Monday 11/14: 

• Injuries: Waited all day for three-phase bone scan that turned out to be inconclusive. Hope to learn more at my ortho surgeon follow-up in Co Springs on the 23rd. 

• Transition Home: Patrick and Calvin packed up the room and we were discharged by 6:30. Drove home with Patrick and had a very successful re-entry to the house with happy dogs and humans.

Tuesday 11/15: 

• Transition Home: Slept a wonderful 12 hours and ate non-pureed food for breakfast/lunch (smoothie and breakfast burrito bowl)! 

• Follow-up Care: Woke up to snow on the ground and very lucky to have a willing Patrick and Calvin who already shoveled and salted before I woke up so we could go on our first outing to see a friend-recommended Dentist. Today was basically gathering information (hearing the story, reading my op surgery notes, and taking pictures). For next steps he’s going to consult with his oral surgeon partner and strategize. This surgeon is MD DMD and they work together on hard cases a lot—in his words, “cases a lot of people don’t want to take.” I may need to see the surgeon first or they may be able to propose a plan - the goal is to have an idea and questions prior to follow-up with my face surgeon on the  23rd. Super happy with this new care team! 

• Highlights: Ate mac and cheese for late lunch/dinner at the dining room table (!) and then relaxed, organized and unpacked--really bossed mom and Calvin around while I sat in bed--all the things I have been gifted, acquired, and/or brought home from the hospital and very slowly put on fake cat nails. We've been enjoying experimenting with non-alcoholic happy hour 🤗.

Wednesday 11/16: 

• Transition Home: Slept very well again and enjoyed a day with no appointments and mostly getting settled in. Took a shower and played with merlot hair dye (imagining I'm a superhero). Enjoying eating non-pureed food - Calvin made yummy pasta for lunch and we ordered Indian food for dinner and had Carolin over to watch the nuggets in bed. My nurses (mom and Calvin -- with Patrick's agreement from afar) cleared me for independent bathroom trips (woo!).

Thursday 11/17: 

• Follow-up Care: I had a great follow-up with my leg ortho surgeon. He is very good at what he does and also honest, trustworthy, and very funny. Overall he said my legs are healing great. I do have Heterotopic Ossification (HO) in my right thigh and there’s really nothing to do about it. Movement helps train and keep the other muscle tissue moving around the bone that's forming where it shouldn't, but won’t stop or reverse progression. There's no way to know how big it’ll get but if needed, he would consider surgical removal after 1 year. My right leg is still good to weight bear for short distances; it was helpful to clarify that the goal is not to build up to long distances yet. I can start working with my boot off in 2 weeks. My left leg cannot start weight bearing until early January (10 weeks post surgery is January 2) 😬. I'm having a hard time getting prescriptions refilled and coordinating with home health. Referrals from and general communication with the rehab center are not ideal. 

• Highlights: I can hot tub! He took my arm splint off and put a ring finger splint on, and gave me exercises to do for finger and wrist range of motion. I follow up with my arm surgeon follow-up next week. At home, we experimented with a new juicer and made some yummy green juice.

Friday 11/18: 

• Follow-up Care: Established with a new primary care doctor who is a pain specialist. He is great and seems to be the perfect addition to the team. We are increasing nerve pain meds to help with uncontrolled nerve pain in my face, which has been an ongoing issue. There's a lot of room to adjust dosage so we are working to find the sweet spot. My face pain is the worst of my pain and changes almost daily, perhaps a good sign nerves are healing but still very uncomfortable. In addition to constant pain from the cheekbones down, I have random shooting pains into my eye sockets, ears, and other new places... its all evolving. My doctor suggested other/better home health organizations to refer us to. A couple of hours after the PCP appointment, I had a recommended massage therapist come over for a consult; she worked on my neck, shoulders, and upper back and I will definitely continue to see her. I sure need it! 

• Highlights: Had a relaxing evening eating pho in bed with mom and Calvin waiting on us - he chopped all the pieces of mine up really small so I could eat it easily. Yay for comfort food and a relaxing family night!

Saturday 11/19: 

• Settling in: Mom and I snuggled in bed and had a lazy morning before getting set up to juice again using a friend's recipe; turned out very yummy and an easy way to get nutrients and can always add protein powder if I need more protein for the day. We've worked out our rhythm where I sit in my wheelchair at the dining room table and get help cutting fruits and vegetables but can manage the juicer myself (except the hard part, cleaning it). Then a friend from Taos arrived for the evening, such a lovely visit and very uplifting. Feels so good to hug on and spend time with people important to me! 

Tracy's Reflection: Chosen family are incredibly important and I have an amazing support system that continues to show up for me and my family in ways I wouldn't have imagined. Immense gratitude.  

Sunday 11/20: 

• Settling in: Nice slow morning at home with family and friend from Taos. Visit from my other mother, who delivered a key lime pie from village inn 🤗  - I'm trying to get some meat back on these bones and have a newly found sweet tooth! I've gained 5 back so far (sitting at 110) so slowly making progress. Eating mac n' cheese several times a week certainly does not hurt the effort. Patrick got into town and tried again to pick up my prescriptions, running into issues again but able to pick up a couple of things we needed (the saga continues). So nice to have him and the pups back! Another visit from chosen family to watch sports, which always fills my cup.

Monday 11/21: 

• Follow-up Care: Established with my new oral surgeon and he did an extensive exam, feeling each tooth and taking new images which he pulled up on the big screen and could show my skull from different angles. Good news: my mouth and bite are fixable. Bad news: he won't do anything for 6 months post-original surgery, which means waiting 5 more months. He will essentially have to re-break some of the healing fracture areas to realign my jaw. The team will include my new dentist and an orthodontist (tbd) to determine which teeth are ok to stay and which need to be removed and replaced. He wasn't too concerned about my loose teeth or the ones that might be dead/dying, he thought the loose ones might solidify or alternatively fall out and that it was ok to wait on the other ones until ortho/dentist get more involved. Keeping up with my oral care is really important to keep things healthy and prevent infection. He prescribed a new muscle relaxant to see if it may also help with my uncontrolled face pain. Still running into issues filling my pain and nerve med prescriptions but hope to get it solved with new PCP early this week - I am running out! 

• Legal: Had a great catch up call with our amazing, thorough, and caring legal team. 

• General home stuff: We were all exhausted and had another early, lazy night.

Tuesday 11/22

• General home stuff: Pat and mom ran errands, Calvin working, I lounged in bed till 12 with a telemedicine appt mid-morning. It was very nice to check in with my behavioral health therapist from Taos for the first time since the accident. Our sessions typically include both talking and movement, including trauma release exercises (TRE), so it will be much better when I can finally see her in Taos; our check in was still very helpful. 

• Follow-up care: I got a call back from my primary care office about prescriptions and my mom spent hours dealing with Walgreens and my prescriptions are finally solved! There are no other home health organizations accepting patients so they sent a new referral to the original company.

• Legal: My legal team stopped by for paperwork and medical records which is another frustrating lesson in this whole process; the visit reinforced my knowing that I have the right legal team on my side.

•  Highlights: While she was gone dealing with that (THANK YOU MOM), Patrick, Calvin, and I figured out how to safely get me in and out of the hot tub (big win!). Getting to be in the hot tub, weightless, and do my PT exercises in that environment is beyond yummy. Ended the day with a nourishing ayurvedic-based, diet supportive, food delivery and visit from more chosen family. 

Wednesday 11/23 - Big day of follow-ups in Co Springs!

• Arm surgeon: She was visibly thrilled and surprised at my progress. I am fully cleared for weight bearing using pain as my guide for how much is ok and to start working with finger mobility. My ring finger had ligament, nerve, and joint damage, so that will be the most difficult to rehab and is strapped to my middle finger for assistance (buddy straps as they call them). Next follow up in 4 weeks.

• Face surgeon: A lot of information to process! He was running behind because he was on an urgent call with a surgery team taking care of victims from the recent tragic shooting in the Springs. I feel increasing gratitude to have him on my team and now theirs, too. He seemed generally happy with how things are progressing and reiterated how rare and severe what happened to me was; the procedure was super complicated and the extent of damage required plates on both sides of my skull. In his decades of trauma work, he’s rarely seen the need for this type of plating. The inner plates are difficult to see from typical scans, so unfortunately when establishing with my new dentist and oral surgeon, they did not know about the inner plates. According to my face surgeon, it may not be a good idea to fix my jaw alignment ("occlusion") after all because the extensive plating, and specifically the plates on the inside, will be very difficult and potentially risky to remove in order to rebreak my jaw to realign it. They can still fix alignment of teeth and the health of my teeth themselves, but without fixing jaw alignment it is hard for me to imagine what the end result looks like. He admitted that it is hard to know and could be an ongoing process for many years. He and my oral surgeon have worked together on cases before and will strategize about what's possible. From his perspective, the biggest risks to my healing right now are maintaining oral health as my upper jaw was broken into three segments, risking damage to teeth roots and insufficient blood supply. So, regular dentist check ins are key. Other next steps include a skin graft to remedy my lower left eyelid and eye droop and to remove some of the exposed wires and plates in my mouth. Some of the facial plates are shifting to be more exposed and are poking my lips; I'm currently using dental wax to help with pain. If the plates continue to shift and begin to cause more pain, I am to reach out. I asked about the possibility of fixing my crooked nose and in his words, "when I saw you, you didn't have a nose anymore and I rebuilt it from your hip bone," which to me means no, it is very fragile and I'm lucky to have a nose at all. He commented on the importance of keeping my nose moist using a humidifier and sinus rinse. I will do a CT scan and follow-up appointment in 4 weeks. Hopefully the surgery will happen then--and hopefully it is all in one procedure--or shortly thereafter. He is also able to attempt to reduce the appearance of scarring down the road.

Thursday 11/24 - Sunday 11/27

• Thanksgiving: To start... I want to humbly acknowledge that I grow, live, work, and play on the unceded ancestral lands of the original peoples of the Apache, Cherokee, Diné, Očhéthi Šakówiŋ, Pueblo, and Ute past, present, and future. With gratitude, I pay respect to the land, the people and the communities that contribute to what today are known as the State of Colorado and State of New Mexico. I have so much to be thankful for - I can't say it enough, I have such amazing support on this journey and am continuously grateful for that as well as this incredible body that wants to heal. I have crossed paths, (re)connected, deepened relationships, and been supported by a multitude of individuals in the 6ish weeks since my accident. I also recognize the immense number of privileges I hold in being able to acquire the things I need to heal, eat healthy food, have high health literacy and coordinate my care in a dysfunctional system, among many other things...

• Frustrations: Getting my referral coordinated with home health is not going well. As of Friday, we hadn't heard from them so tried calling several times and sent an email. I'm eager to get started with therapy at home! Nerve pain in my face is also an ongoing struggle; the nerve meds and muscle relaxant seem to have dulled the pain slightly but I'm still having constant pain from the cheekbones down. My skin is mostly numb but my fascia, connective tissue, and bones hurt a lot. I'm also having random shooting pains in my face that move around (sometimes to my eye sockets, sometimes ears, sometimes around my mouth and nose). I ordered new over ear headphones that are slow to arrive because my earbuds seem to exacerbate the shooting pains in the ears. The increasing and ever changing pain may be a good sign that my nerves are waking up and reconnecting, though it is very uncomfortable and painful to live with daily. My leg and arm pain are pretty well controlled if I keep up with pain meds, though I'm conscious of wanting to get off of them, but when I think bigger picture about the extent of damage and healing taking place I realize I am ok right now.

• Walker use: Started walking around more into other parts of the house Thursday and even sat at the kitchen island, a previous very common meal and hang out area. Friday I transitioned to the walker with no arm rest (photo), which was kind of scary but felt safer and more right than I expected. The rest of my body was sure happy to be more symmetrical when I walk around. Now I'm consistently using the walker with no arm rest and more mobile around the house, even going in/out of the living room, which requires doing a step up or down in the walker--oh, the things we take for granted! This transition has brought on more soreness/pain in the arm but not that feels bad or wrong. Definitely have added icing my arm to the regular routine of icing legs on and off all day.

• Other highlights and progress: All fingers on my left hand are starting to get back involved in typing (I realized this was happening without me consciously asking them to - pretty cool and exciting progress!). This, and using the walker with no arm rest, are things PT/OT would and should already be helping with. Patrick took me on a wheelchair walk up to the neighborhood park and back before he left town. Lots of World Cup watching. Sat outside on the deck with a family friend (really my other mother 🙂 - photo here) which felt very nostalgic and nice. Made more juice and a key lime pie thanks to the help of mom and Calvin!

Monday 11/28

• Therapy: I can't believe I've been home two weeks already and haven't yet had any therapy! Frustrations with home health continue as I spent most of the day trying to get ahold of the intake coordinator. When I finally spoke to them, there was confusion about my referrals which did not make any sense. According to them, I need a new one sent. After discussing with mom, Patrick, and Calvin, we decided to ask my PCP for a referral to outpatient PT instead. I emailed to request this change.

• Highlights: A family friend gifted us in-home massages so Calvin and I got to have massages today (mom tomorrow). Wow did we both need it! 

Tuesday 11/29

• Therapy: Still waiting on approval and referral for outpatient therapy from my PCP.

• Other care: Telemed appointment with one of my most valued practitioners from Taos, who holds a variety of expertise, but today focused on energy work and calming my nervous system. 

Wednesday 11/30

• Exciting news: Hot tub purchase and great deal thanks to a very nice person (shout out to Robbie Gildea at Aqua Spas in Thornton)! Great people in this world. Cheers!

• Therapy: Still waiting on the PT referral; so eager because I have approval to start working with my boot off on my weight bearing leg! I've been doing my PT exercises 3-4 times/day nearly every day since leaving the hospital and they are feeling pretty easy at this point. Ready for more!

Tracy's Reflection: I am doing a lot of my own care coordinating which for me entails making sure my providers are communicating, have the right/full information, and are on the same page/in agreement about next steps;  organizing and trying to make sense of all of the—sometimes conflicting —information from different sources (providers, hospital systems) in addition to still working on getting access to all of my records and images; following up on prescriptions; following up to make sure next steps happen as discussed and continue moving forward; and following up on referrals and making sure insurance is settled, which can be tricky especially for out of state. I’m also healing intense and widespread trauma, doing my PT exercises 4x/day, working with providers from my past and , trying to live in the present and take one step at a time, continuing to sit in joy and laughter, and also thinking bigger picture (and wallowing when I need to). I don’t know that there’s someone who could do this for me better than me (with immense support and brainstorming team efforts), but wow is it an exhausting full-time job. The uncertainty and amount of information to process is also overwhelming at times--as are the bills coming in. To quote someone very close to us,  “Wow that’s a lot of information to process but it is evident he knows his stuff. I also read in hope, in what he had to say that there’s just no knowing what the future will bring, and that to me is hopeful.”  I return to this idea often these days ❤️

Thursday 12/1

• Therapy: Still no PT! (full story--and some venting--below if you want to read)

• Care coordination: Spent the majority of the day on care coordination efforts from my comfortable bed office (bed desk and view)

  • PT:  started with a PT referral from my PCP—very exciting—and a suggestion to check with insurance. First called the PT office, they didn’t yet have the referral (can take up to 48 hours to process and then additional time to check insurance and get me assigned) so I followed up with PCP to acquire a copy via email and noticed it only lists my femur fractures (what!). Called insurance, after being bounced around, finally was told that the PT office is not covered and they would send me a list of those that are. Called PT again, asked them if they take my insurance, they do, asked if I can email the referral, no they don’t have email (WTF). Convinced them to let me send to their individual work email, sent the referral, let them know my injuries are much more extensive, they said I can only get treatment for the injuries listed. BLAH. Decide to move forward thinking I can get my referral updated later. A few minutes later I get a call back that the referral is not signed by an MD so they cannot accept it (my PCP is a PA), and they will call to get it updated. I also emailed the referral person about this and the need to update with all injuries, which she didn't think is necessary.

  • Oral surgeries and next steps: Called both oral surgery and dentist office to follow up on my emails from after my face surgery appointment, left voicemails. Got a call back from the dentist and convinced him of the urgency of a meeting between him, my oral surgeon, and face surgeon to get on the same page for additional surgeries. Scheduled a root canal for one of my front teeth for 11/22 and need to make sure my face surgeon is ok with that happening before he removes wires and plate(s) that are moving and poking my lips in early January.

• Home stuff:

  • I'm getting into a morning routine that's feeling good. Everything I do takes so long! I start with puppy snuggles (like this), then move on to a few PT exercises that I keep my boots on for, then take boots and socks off, put scar gel on ankles and legs, then do my PT exercises that I like to do without boots on. While waiting for my leg scar gel to dry, I wash my face with a wipe, put scar gel on and check for any dissolvable inner sutures poking out (I've been gently removing them when possible - photo). Then put lotion on my dry skin (a lot sloughed off, especially in surgery areas), mom often rubs my feet with super salve 🥰, change clothes, and on to whatever the day brings!

  • We are really enjoying each other's company and figuring out how to do this unexpected thing we've been asked to do. Go team go! Among the many things I am grateful for right now, the World Cup happening when we are moving through this crazy experience, is just so lovely 😊

Friday 12/2

• Care coordination: Emailed my face surgeon about the conversations yesterday and asked about root canal timing. Also emailed my leg surgeon asking for either a referral to the PT office with a full list of injuries or to contact my PCP office to make sure they have all of my records. Heard back a couple of hours later that the referral was sent and got a copy for myself (yay for movement!). Sent the referral to my PCP office to make sure they have it, too. Leg surgeon’s team also advised me on how to get my records from Memorial as I have struggled communicating with—really, hearing back from and getting my several requests processed through—the medical records department.

• Home front: Juiced again and enjoyed hanging out in the kitchen. Did a little bit of work for the Human Services Department (updating a performance scorecard that I manage in time for a legislative hearing mid-December) — it feels good to do some work while I’m waiting on getting into therapy, and also cements that I do not have the capacity for my regular work schedule right now. Nuggets game, dinner, and NA champagne in the living room which is now very cheery with holiday decor 🙂 

Saturday-Sunday 12/3-4

• Home front: Very much enjoying watching World Cup every morning and afternoon. Patrick arrived and is back in town until Wednesday. We made more key lime pie and enjoyed the hot tub!

• Progress: Patrick helped put the regular toilet seat back on; I've been using a booster seat toilet and was ready to advance back to the regular height seat (woo!).

Monday 12/5 

• Follow-ups and Care Coordination: Heard back from face surgeon that it is ok to move forward with root canal AND that I can start to drink out of straws (goodbye smoothie mustaches!). I had a good check in with PCP and right now, we are doing the best we can do for my face nerve pain with the meds I am on. We will continue to check in on pain levels but for now, keep doing what I am doing. FINALLY got PT scheduled to start Thursday! It was a bit of an effort to get them to recognize the number of injuries I have and that they need to be evaluated together to create a game plan; we can't simply look at and treat a femur fracture, for example, on its own. I feel good about the plan we have and moving forward with a full evaluation on Thursday. Decided to also ask my arm surgeon to send a referral for therapy for my arm and hand. 

• Progress: While in the kitchen, I practiced doing things--like filling up a measuring cup from the sink, scooting it across the counter while walkering to the microwave, and putting it in the microwave, taking it out when ready, and pouring water into another container--with supervision in prep for getting cleared to do it on my own.

Tuesday 12/6

• Home front: Officially signed off to go to the kitchen by myself to refill my water bottle and even put electrolytes and/or trace minerals in as well as to refill my coffee. Small things but with the things happening over the last few days including getting PT scheduled, it feels like a lot of progress!  Had a burrito rolling party with ingredients Patrick prepped and saved the insides for my meals throughout the week. Yum!

• Care coordination: Making some progress on the medical records front finally, thanks to help from family.

Wednesday 12/6

• Patrick left early to drive back home to Taos. This living in two different places business is hard!               

• Follow-ups and Care Coordination: Saw a new eye doctor and it was the first appointment out of the house with only two of us going, which I didn't think much about before leaving the house. Mom and I just figured that out while we were doing it... so many little things from where to leave me in the wheelchair while parking, to how to bring both the walker ande wheelchair, etc. etc. This was also the first appointment where I used the walker and moved around to different chairs for various tests. Again, something I didn't think about ahead of time but it just happened. My eye Dr is new in the office and specializes in contacts including for dry eyes, so she knows a lot about eyelid droop and the consequences, as well as my autoimmune disease called sjogrens which causes dry eyes. Overall my eyes are in great health, the prescription for my right eye has changed slightly but not significantly, and she was glad to hear my face surgeon is planning to try to remedy my lower eyelid soon. She gave me some good things to do to keep my eyes moist in the interim -- great to have the support and also adding more items to the daily checklist for care! Then had a behavioral/mental health therapy appointment followed a check in with the legal team regarding our case. Lesson learned that this is too many things for me to do in one day, I was spent and a bit overwhelmed by the end of it all! 

• New Pain: There's a plate and wires on the upper right side of my mouth that seem to be poking out more and my teeth are more sensitive in that area (they were already loose and painful but worse now). I am having trouble getting dental wax to even stay on because it is such a big piece sticking out. Need to follow-up with my face surgeon about this and try to get my CT scan moved sooner so we can see what is going on.

Thursday 12/7

• Care coordination:

  • Spent much of the morning checking in on and organizing my information re: billing and insurance; I'm getting so much mail! I received a shockingly expensive air ambulance bill and other weird notices of things not covered by insurance. For example, I got a note that my walker with arm attachment which was ordered while in Rehab and therefore ordered by the Rehab Medical Director was not covered because I have a broken leg... seriously? Insurance is so frustrating.

  • It is open enrollment for 2023 health insurance, so I enrolled in new insurance for 2023 with efforts to keep continuity of care in tact for this accident; so difficult alone to get my primary providers in Taos covered on the same plan and now the added complication of many out of state providers. I re-enrolled in BCBS to not complicate/mess with my coverage for this accident, knowing I will have to pay out of pocket for certain providers when I go back to Taos.

  • I submitted paperwork to PCP for temporary disability handicap placard.

  • I'm beginning to explore options for getting bodywork and other holistic care covered; in healing from previous accidents and injuries these types of care have been immensely helpful to me and I have already had several of my providers recommend--but not yet explicitly write a referral  for--massage and acupuncture. I asked my PCP for a referral.

• Therapy:

  • Had my first PT eval and will start going twice a week as able. It was overall a very good appointment; we like the place and the PT  I established with. They have the same pilates equipment (a reformer) that I have at home, so that's exciting! I haven't seen that before at a PT office. He was impressed and surprised at how well I am doing and basically said I am doing all the right things. It was both validating and anti-climactic to be told I'm doing it right and not given more to do. I also recognize this was an eval and that perhaps I am a daunting package to open and react to in a first visit (especially considering my referral listed one of my femur fractures and didn't explain the multitude of trauma). He was reluctant to begin working on weight bearing with my right CAM boot off, something I've been eager to start since officially having approval as of 12/1, and pushed the fact that we have to go slow with everything I have going on... I hope the caution is not a sign of what is to come and also appreciate the want for safely moving things forward. It felt a bit overwhelming then to me to recognize how potentially fragile [people think] I am and another reminder of just how much damage has been done.

  • We scheduled an OT eval for my hand and arm next week and PT also wants to help me find a certified hand specialist to work with.

  • The idea of seeing PT 2x/week and OT at least 1x/week for awhile is hard to imagine and a lot to ask of my care team/drivers (and me)!

Monday 12/12

• Therapy: Walked across the room in a regular tennis shoe in PT! Yay for progress. Will start wearing my regular shoe more at home instead of the boot and see how it goes, usimg pain as my guide for when to back off and wear the CAM boot again. My PT could not give me a timeline or any idea of what to hope for with progression; again, getting the feeling that this is a bit unprecedented and hard to know what will happen. This response both makes sense and is frustrating. I'm hoping my surgeon will have more to say in Thursday's follow up and upon reviewing xrays.

• Care coordination and follow-ups: Turns out my PCP is not covered by insurance like we were told, urg.

Tuesday 12/13

• Therapy: OT eval went well, finger/hand strength is close to normal and she gave me new finger range of motion and dexterity exercises to work on every day. The plan is to see her weekly in addition to PT twice weekly at least through January.

Wednesday 12/14-Thursday 12/15:

• New symptoms: This week I started  having a new odd sensation where when I have liquid in my mouth, it feels like there is liquid is on the outside of my left nostril and/or on my upper right cheek. At first it was only the nostril and now the cheek too. New nerve activity, perhaps?

• Ongoing care coordination and insurance frustrations: Spent the rest of the week battling with insurance over referrals and approvals. So frustrating! It started with a call from the UC Memorial system, where I was in the trauma center and have continued follow-up care with my surgeons, asking for me to check on approval for my face CT scan that afternoon. According to the referral/benefits coordinator, I need a referral from my BCBS-assigned NM PCP (who I have never seen) to see my specialists in CO. The specialists they’re referring to are the surgeons that saved my life and who, of course, I need to continue seeing. This should be considered continued care related to an emergency and not a random choice as insurance is considering it. I need the CT scan for my face surgeon to see how well the plates in my face are holding, how my facial fractures are healing, if my nose bone graft is holding, etc. This will inform our next steps, both for an upcoming surgery to remove plates and wires poking me in the mouth as well as the planning my face and oral surgeons are doing with respect to my mouth and getting my teeth to match up. BCBS is treating my follow-ups with and for surgeons as if I am electing to see out-of-state specialists when really I need continued care with these folks until they say I don’t need to see them as regularly or at all (which could be a long time…). To make matters worse, open enrollment just ended for 2023 health insurance and I stayed with BCBS to not add complications. I’m exploring getting a case manager/care coordinator assigned to me from BCBS to help with denied claims, my attorneys are reaching out to make sure all providers know this is an active investigation/lawsuit, and I’m working with family friends/experts to assess if I have other options for insurance that may better meet my needs. I’m scared I’m racking up debt and going to get screwed when this is all over. I am also not going to let this BS impede my progress and will not stop doing what is best for my next steps, even though the costs are adding up without insurance coverage (providers charge less when things are covered because of deals with insurance companies). The insurance system is so messed up!

• Good news: my face and oral surgeons are working together on a plan for my mouth that they both agree on, our new hot tub was delivered and set up at home in Taos!

• Leg surgeon update: he is again very pleasantly surprised at my progress and has said I can start to put weight on my left leg on Christmas (!). I have HO now in both thighs at the femur fracture site, so need to continue working on the soft tissue with massage and movement.

Friday 12/16 - Tuesday 12/20:

• Insurance/Care Coordination Saga Continues: We've been consulting with our network of family and friend experts. I am exploring getting a case manager/care coordinator assigned from BCBS who will hopefully fight all of my denied claims and help with that process. After talking to the robot—and and begrudgingly repeating my BCBS ID number several times because she can’t understand my new lisp—I finally get through to the case management line which goes straight to voicemail with the promise to call back within 24 hours. I have left voicemails on Friday and again today… clearly they stick to the 24 hour commitment. We have very helpful contacts with the New Mexico Medical Insurance Pool (NMMIP); they offer a separate insurance for folks with complex situations that aren't covered by traditional marketplace offerings. My needs for Colorado as well as New Mexico care complicates things and I’m not optimistic there is a way to meet my needs for care in both states, which makes the idea of returning home to Taos only harder as there’s no question I will continue to need to see CO providers (who saved my life!) for some time. The NMMIP folks are checking on coverage of my CO providers through their plans but after consulting with their network, think the best option is likely for me to apply for CO insurance by switching my residency as I am living at my mom’s after all. We are in the middle of exploring this option and the implications. Getting my CO providers covered would be a big win for care needs moving forward but will make going home to Taos difficult. SO SO complicated and frustrating and certainly not helpful for keeping my nervous calm.

• Progress: I am no longer wearing the CAM boot at all on my right foot and am now sleeping with bare feet per my leg surgeon’s suggestions. I am increasingly mobile; I am going in and out of our sunken living room (which requires steps) without assistance, walking out to the car instead of using the wheelchair (see!), and walking out to the hot tub and get in/out myself instead of getting piggybacked by Patrick. PCP sent referral for massage with the hopes of getting insurance coverage and also filled out paperwork for temporary disability handicap placard which we will submit in the coming days.

• Fun Update: I’m still having trouble eating most things, and still eating a lot of mac and cheese. We decided with a group of friends to have a mac and cheese cook off, which was the first social thing any of us have really done since the accident. It was so much fun and the competition was serious! We had 7 different mac varieties, all of which turned out amazing. Thanks to those who came for a really fun time!

Wednesday 12/21 - Monday 12/26:

• Reflection: It is wild reading my last update and thinking about what has happened since then. I’ve made amazing progress and am so proud of myself! I’m feeling immensely grateful for all of the continued support that has helped me to get here and empowers me to continue to focus on healing. THANK YOU to everyone who has been part of this experience, from the very beginning to now. I see you and I appreciate you.

• Surgeon updates:

  • Arm surgeon (12/21) very pleased with progress; my fracture is healing well and the range of motion in my arm and fingers is great. The numbness on my ring finger side of my middle finger may improve over time. I will continue to use pain as my guide as I continue to be more mobile. She has agreed to turn over follow-ups to my leg surgeon to reduce appointments.

  • Face surgeon (12/23) spoke with oral surgeon prior to appointment and they've agreed on a procedure called the LeFort in 6 more months (~June) to essentially re-break my jaw and fix malocclusion. I’m optimistic hearing they are working together, have an agreed upon plan, and that there’s hope for significant improvement with my mouth. I’m so missing the enjoyment of food! In a couple of weeks, he wants to remove the wires in my mouth that are sticking out and poking me, but likely will leave the plates as there is risk of other nearby plates moving when removing one. My right lower eyelid has lots of scar tissue that will soften over time and he’s still pretty certain a skin graft surgery will be needed to improve the eyelid droop but the surgery will leave a new scar so it is ideal to wait longer to see how much the scar tissue improves before doing a skin graft. We will revisit this in a couple of months. We talked about how well my face scarring is improving (I’m spending a lot of time putting on scar gel and massaging!); there’s a small part of the scar that’s black which he referred to as “trauma tattoo” (see here). This is caused by debris getting into the skin and will be permanent unless I do laser removal like one does for a regular tattoo. We also discussed that I’m feeling like my teeth are still loose; he suggested that it might actually be the pieces of my mandible (jaw) that aren’t fully set and that the segments themselves may be what’s moving.

• Care coordination:

  • Root canal (12/22) canceled due to extreme cold in Denver and have rescheduled for 1/10. We will also discuss a plan for general dental care, possible removal, and realignment of teeth now that we have a plan for oral surgery; I’ve got several painful teeth/gum areas that I’d like assessed.

  • FINALLY heard back from BCBS and have a care coordinator/case manager assigned to me. I explained my situation big picture and gave specific examples of denials that have happened; she is speaking with her medical director and supposed to call me back 12/27. If she doesn’t, I have a direct number and will call first thing 12/28. I’m planning to loop in my attorney for the conversation.

  • My current thinking is that I’ll stick with BCBS NM for 2023 coverage for now and see how the conversation goes. Still mulling over a CO insurance switch but it feels like a big challenge with moving back to Taos. We have two other family friends to consult about insurance drama if the call with the BCBS case manager does not feel promising.

  • I’m increasingly thinking about the move back to Taos, especially now that additional procedures and surgeries are more clear. It looks like end of Jan/beginning of Feb may be possible. I am planning to start reaching out to Taos providers to get my network established there, and reorganize some of my follow-ups in Denver/Co Springs to make it easier on us to travel for follow-ups ~1/month. I wonder when I can drive and if it’s time to start looking for a new car?! Perhaps by the time I’m ready to move back I will be able to drive there myself 😏

• Other updates and progress: No longer wearing CAM boots at all! Somehow I’m 1.5 inches taller than I was before… now 5’4.5 instead of my previous 5’3. Officially walking with both legs (video here)! Not full body weight on my left leg yet, but first few days of weight bearing are going really well with minimal new pain, primarily experiencing feelings of aching and weakness. I’ve used both the crutches and the walker, but for now sticking mostly with the walker because it allows me to carry things in my walker bag. I’ve added doing laps around the house to my PT routine. The amount of time spent on my routine of PT/OT, scar care, and meds/supplements management at home is a little overwhelming but so important. Again very grateful for the time away from work to focus on healing. We had a really nice and mellow holiday at home with just the five of us 💜

Tuesday 12/27 - Thursday 1/5:

• Reflection: I sound like a broken record, and yet, again am surprised and happy with how much has happened since last updating this website! My healing is progressing extremely well and no one expected things to happen so quickly. Perhaps I can in some ways thank my previous injuries and long healing journeys for my ability to focus so intently on healing, the integration of holistic and non-Western healing modalities and healers in my care network (including the number of supplements that I have, for so long, consumed daily and continue to refine with my providers), and my mind/body/spirit connection that I’ve worked so hard to hone.

• Visit home: I was able to go home to Taos for a short visit over the transition to the new year; thanks to mom for all the help getting ready to travel, to Calvin and Silv for traveling with me, and to Patrick for all his work to prep the house and make sure things were ready and comfortable. It felt SO good to be home and I can picture myself back there full-time, easily. Yay! Another wonderful gift. One of the days home I stayed by myself while the family went skiing and was able to make myself a smoothie, stoke the fire, and comfortably move around. While I wasn’t able to coordinate with everyone I wanted to see while in town, I was able to get together with several of my close friends and family and it felt very heartwarming; I can’t wait to move and settle back in to life in Taos.

• Insurance Navigation: With no luck getting communication or support from the care coordination/case manager promised to me by BCBS, I checked in with yet another friend of a family friend who has experience with insurance issues. She has worked as a patient advocate for years, has a background in critical care nursing, and is now retired. She's offered her help for free with navigating the situation. Once again reminded of the truly amazing and passionate people out there! She has already been immensely helpful in getting my claims filed properly as accident-related and life-saving and will continue to do this as I need continued care to heal. I feel like a weight has been lifted and am more optimistic about the situation now that she is on our team.

• Progress:

• Driving: My leg surgeon and PCP have both given me approval to start driving short distances. I know it will take time to feel comfortable, I expect some fear and anxiety to come up, and at the same time am eager to gain back more independence and a sense of normalcy.

• Walking: I’ve progressed quickly with my walking abilities and am now mostly using one crutch to get around. I have been able to move forward by listening to my body, watching for increased pain (soreness is different and expected), and slowly moving from walker to two crutches to one crutch. So wild to think I only started putting weight on my left leg a week and a half ago! Soon I will likely make the transition to a cane.

• Meds and Pain Management: I’m starting to wean off of my muscle relaxants and pain meds and that is going pretty well so far. I am conscious of my high pain tolerance and having lived with chronic pain for most of my life, and seek to keep pain under control while at the same time reducing meds.

• New Massage Therapist: I established with a new amazing massage therapist recommended and referred by my PCP. I will see him every other week and will hopefully get insurance coverage. I am excited about this addition and feel this is very important to my healing and continued improvement.

Friday 1/6-Thursday 1/12

• Move home: Patrick was in town 1/7-10 for a final short visit before I move home. Weird to think we might soon be past the time when we’re living apart as I’m working on all the logistics to move home at the end of the month! It’s certainly a bittersweet mosaic of feelings - excited and happy to be at a comfortable point in my recovery to move home, ready to settle in to my old/new life in Taos with my partner and our animal family, missing my CO family and friends ahead, lots of pondering and dreaming about what life could/will be like. I'm working on setting up my network of care for the move home.

• Care Coordination: We’re working on getting insurance approval sorted for a follow-up surgery 1/19 to remove mouth hardware. Insurance still hasn’t approved my initial surgeries (WTF!) so continued care is becoming a challenge. Luckily I have a patient advocate working diligently on my behalf to get things in order; I’m so grateful for her collaboration, time, and expertise on my case and know I couldn’t do it without her. How on earth do people navigate this nonsense! I’ll also see my orthopedic surgeon in Co Springs on 1/26 for a follow-up for both my legs and arm.

• Other progress:

  • Car and Driving: I’ve ordered a gently used 2021 4Runner on CarMax which is set to be delivered in Denver on 1/31, with the possibility of an earlier delivery. Another positive step in getting back to “normal”! I have still only practiced driving on residential roads and not yet out with many other cars or traffic… getting there!

  • Mobility: I’m primarily using a cane for walking these days and enjoying the independence it brings with being mobile AND able to carry a few things. Using one of my dad’s old canes until a fun one I ordered arrives. 

  • Therapy: I continue to see PT 2x/week and OT 1x/week. I finally got new PT exercises from my therapist so am continuing to build strength and range of motion in my legs and ankles. 

  • Pain management: I’m still mostly experiencing aching in  my left arm, legs, and ankles with some additional pain in my knees and ankles with the new exercises. I've been able to significantly reduce my pain meds and am completely off muscle relaxants, continue to reduce opioid intake, and will continue to stay on nerve pain meds for the foreseeable future as my face pain continues to persist.

  • Massage: I saw my new amazing massage therapist again and wow do I feel significant improvement upon walking out from my appointments. He’d ideally see me for 1.5 hours 2x/week… here comes another insurance battle.

  • Teeth: I was scheduled for a root canal on 1/10 and because of the widespread nerve damage in the area, we decided to wait. Per his conversation with my oral surgeon, I will likely lose some teeth in the summer jaw reconstruction surgery, so he did some “viability tests” on the tooth and surrounding teeth to check nerve feeling and thought it wasn’t conclusive enough to do the procedure and wanted to save me the money. He spent almost an hour talking to us, did two X-rays and didn’t charge me!

Friday 1/13-Saturday 1/21

• Move home: Things are looking in order for me to move home on 1/30! Mom and I will drive my new car home together and she’ll stay a few days to help me settle in and hang out, then family from ABQ will come visit, bring her back to ABQ and she will fly home. Of course, any of these plans are subject to change — we continue to stay adaptable these days. I can’t believe I’m at this point where I can safely and comfortably move back home, finally!

• Care Coordination: We are still in ongoing battles with BCBS NM for coverage of my original care from the accident and subsequent, necessary, continued care. I’ve received some staggering bills ($1M in the first 24 hours of my care… and that’s only what I’ve seen so far), and I know it will all work out with my patient navigator, attorneys, and other family/friends offering to help push things through. We are getting close to the point of needing to get the insurance commission involved and will do that when the timing is right. Switching much of my weekly care to Taos will help with 2023 care, though the ongoing care needed in Denver and Co Springs for all of my injuries will continue to be a fight.  I’ve been able to set up my network of care pretty well in Taos, with a chiropractor who specializes in myofascial work and chronic pain as well as nerve trauma, a massage and craniosacral provider, pain injection specialist, naturopathic/Ayurvedic doctor who specializes in movement therapy and energy work/bodywork and nutrition counseling, and a new PT. I’m working on grouping my follow-up appointments in Colorado for the first week in March.

• Other progress:

  • Community: I had a friend visit from out of town last weekend which was so lovely to have the company and just relax and hang out; we had a couple of other close friends over for a ladies night on 1/13. I’m making lots of plans to see people while still in Denver - got together with my sisters and nephew, saw my aunt and uncle, and have other family and friend plans in the works between now and 1/30.

  • Therapy: On 1/13, I graduated from future OT appointments as there’s not much more they can do for my hand/fingers. I have exercises I will continue to do in the hopes that mobility, dexterity, and feeling continue to improve. There is a certified hand specialist at my new PT office in Taos, so perhaps will see them for additional care. On 1/17, I brought a list of all 30ish PT exercises I’ve been doing and he helped me cut them back a bit. I’m increasing my stationary bike time every day and am almost at 15 minutes!

  • Mouth: I had a follow-up surgery with my face surgeon on 1/19 to remove hardware from my mouth. We decided to go forward as planned despite insurance denying the care. My surgeon even had a peer-to-peer with an MD from BCBS in attempt to get my pre-authorization approved, with no luck. BCBS is suggesting that anyone in network could take on my follow-ups, yet the surgeon had to make a game time decision while in surgery about whether to remove an exposed plate in my mouth. He decided to leave it in and only remove one of the screws (see here if you wish) as there are so many plates close by and structural integrity of the plates is a concern as the work done on my face is fragile and still healing. We are hoping to wait until my big jaw surgery in the summer to remove the plate and will continue to keep an eye on it. My surgeon was pretty clear in my appointment that he should continue to be the one to see me and he will help us with BCBS where possible and also try to schedule in ways to reduce costs. He was very frustrated with insurance barriers to my continued care; I, too, am frustrated and shocked insurance would want such a precarious situation to be taken into the hands of someone else, or that another surgeon would even feel comfortable to take on my case. I am 100% sure that I will not be seeing someone else for follow-up care. My surgery recovery has gone surprisingly well, with limited new pain and much more freedom with eating thanks to the wire removal. My teeth still only match up in one place, but with no wires for food to get caught on I can manage more chewing as long as I can cut up the food into small bites.

  • Car and Driving: I drove for the first time on the roads on 1/13 with no problem, and basically driving everywhere since. We picked up my new car on 1/17 and I’m so happy with the choice I made. It feels very safe and comfortable to have a bigger car. I drove on the highway to my Co Springs surgery, with mom driving home of course. It is feeling surprisingly normal!

  • Mobility: I’m continuing to progress with mobility, using a cane at home when needed and walking without one most of the time. See my 3 month progress video here. When I go anywhere out of the house, I use the cane… goodbye to the crutches, walker, and wheelchair! I even went to Costco with my mom on 1/20 and walked all around. It was a bit overwhelming at times, but then I reminded myself that I did not need to apologize for or even feel like I was in anyone’s way… just be.

  • Pain and symptom management: My pain is feeling very under control, though I am feeling more sore and tired the more I start to do. I am really feeling exhausted, and perhaps it is partially the after effects of surgery, trauma that may have been brought up from being back in the hospital, and general expected fatigue from increased mobility and doing more things. 

1/22-1/30 Last Days in CO and Move Home

• 1/24 Last Denver PT appointment: He was very pleased and also sad to see me leaving. He said we have met my goals of improving range of motion, and I should now start focusing on strength and not needing to use the cane (which I am close!).

• 1/26 Orthopedic surgeon appointment: My femurs and ankles are healing very well, he was again quite shocked at my mobility and progress. He doesn't think we need to continue checking in on my ankles or femurs unless I have increased pain or issues with the HO at my femur fracture sites. I can even now sit comfortably, for a short period, cross legged! My left forearm, unfortunately, is not showing more healing (x-ray here), which he said is not uncommon for forearms so we will keep an eye on it. I am having pain in my arm and after talking about it, realize I have been kind of ignoring the pain as insignificant compared to what I have been through and having had pain most of my life. It could be that the bone is dead or does not have sufficient healthy bone tissue to regrow. I asked if we can just leave it be, and he said that the hardware (plate) will eventually fail as it is meant to help the bone heal and not replace it. Therefore, I will likely require another surgery and bone graft. We will check on the arm again in 3 months and sooner if pain increases. There's no change in my weight bearing or activity with this new information, so that is positive.

• Progress: I walked up the stairs for the first time in the last days at mom’s house! It was much easier than expected (video here).

• Insurance Battles and Medical Records: While getting all packed and ready to leave over the last few days, I was also hit with a lot of new medical information and worked with my patient advocate on our first appeal for my January 19th mouth surgery. I received horrific photos of my face upon arrival to the trauma center and pre-surgery (will share upon request only). I also received the airlift minute by minute report of the life saving care provided; it was both helpful and intense to read. I was in my car by myself for some time before they got to me and was freezing upon the touch; they were worried about hypothermia. It is amazing to see all of the intricate and deliberate care that was provided before I even got to the trauma center almost 3 hours post accident... care that has also not yet been approved by insurance. I’m once again beyond grateful to have a patient advocate on my team helping me to process, organize, and fight the insurance battle that simply does not feel fair or just.

• Community: Lots of seeing people before leaving town - had a lovely sushi dinner with mom, Calvin, and Silv; a Vietnamese dinner with my cousin’s; had my mom’s very dear friend and basically my other mother over for dinner; had a going away party/bday for some of my closest friend’s since we were 9 which was a very fun way to see people and have a last hoorah (photos dated 20230129 here). Then my sister came over to see me before we left town in the morning on the 30th. Feels very mixed to be leaving such a yummy community but I know I also have one waiting for me at home.

• Move home: Somehow we were able to fit all of the important things I needed to take home in the new car, thanks to the team jigsawing effort. The pups like the roomy back seat 🙂 I drove all the way fro Denver to Taos and felt comfortable doing so; it felt like another huge milestone and taking back some power over the situation. We also met up with a state trooper in Walsenburg to pick up my license plate. I’m grateful he was willing to do that for us instead of us having to go see my car and deal with the likely additional trauma associated with doing so. His good friend was involved in the accident and in removing me from my smashed car; he was happy to see me doing so well. I was very happily greeted by Patrick - see here.

 1/30-2/6 First week home in Taos

• First few days: Mom stayed at a friend’s place in Taos the first night to give Patrick and I some space. We’re both—well really all 10 of using including the pups, ducks, and chickens—filled with joy to be back home together. Mom stayed in town until Thursday, when my cousins came up from Albuquerque to see us. We had a nice visit over delicious Indian food. It sure felt weird to separate from my mom for the first time since the accident; another big milestone and also hard to be away from each other. My new cane (photo) arrived shortly after family left Taos, so that was a nice little pick me up.

• New providers and home PT:

  • PT: I established with my new PT and am excited to work with her. She is my mom’s neighbor’s daughter in law who I hadn’t yet had the pleasure of meeting. It feels good to be working with someone that we know and who is so passionate about her work. Given the accident affected most of my body, we didn’t complete the eval in the first visit but I feel good about how we started and will continue to see her 2x/week.

  • Home PT: We moved my pilates reformer inside so I’m starting to do more of my PT there 🤗. I also have the stationary bike and am up to 4 miles in 20 minutes.

  • Other Appointments: Monday 2/6 I drove myself to my first appointment and got to see my Ayurvedic + Naturopathic doctor in Taos who does movement therapy, energy and body work, and nutrition and supplement counseling. So lovely to finally be seeing her regularly in person again! I have additional appointments for massage and a chiro/myofascial/nerve exam this week.

• Settling in: Over the week, and with lots of help from Patrick and mom, I slowly unpacked and started to feel more settled. We've been enjoying the hot tub daily - thanks again to the awesome team at Aqua Spa of Denver! Friday 2/3 was the first day home alone with Patrick at work and I spent the day doing my PT routine finishing unpacking. The last items in my big suitcase were my dad’s sweaters that I was wearing in the hospital; finishing unpacking in general, and that specifically, sure made me miss and feel close to him at the same time. Grief truly does come in waves. Patrick and I then had a nice celebratory dinner out in Taos and I walked a little bit in town — another big milestone. Saturday 2/4 evening we had a homecoming/bday combo celebration at a friend’s airbnb - so heart filling to see so many friends I hadn’t seen since the accident! It was a nice reminder of the love and support we have locally and people I can call on to come be home with me if I need help or simply want the company. Sunday 2/5 we went for a short walk in the neighborhood on Sunday and plan to make that a regular thing (photos here and here)! We had a couple friends over for a mellow dinner last night (2/7) which felt like yet another milestone in getting back to some normalcy.

• On the horizon: This next week is really focused on seeing what life is like with Patrick working W-F as normal, me settling in to appointments (energy/body work/movement therapy, 2 PT, massage, mental health, chiropractor/myofascial/nerve pain expert, and pain injection specialist) and home life. Today, 2/8, is another day on my own with Patrick at work and is a big test of seeing if I can tolerate multiple appointments in one day. I have a gut feeling may not be the best thing for me and also know it will all take some time to get the rhythm right.

Tuesday 2/7 - Tuesday 2/21

• Being home: It is sure feeling amazing to be back in my own space, with Patrick, the pups, and the birds (chickens and ducks), the breathtaking views and solace of Taos living. I am not saying it has been easy, there have been a lot of adjustments and certainly am still figuring out the right rhythm here and leaning into what feels good. I’m allowing myself to sleep as much as I can (and still having some trouble with falling asleep, though CALM magnesium sleep gummmies, THC/CBN gummies, GABA, and other tools help). I've switched up my home PT to ~1.5 hours 4x/week instead of 5, and constantly evaluating and adjusting the mix of appointments and input I am getting which I imagine will continue to be in flux for some time. I have 4-6 weekly appointments with excellent providers and also feels like a lot of input - the system is so messy and does not allow for easy coordination between providers of different types at different practices, it is very complicated. I do my best to keep them all informed of what is happening with the others and try to get it all in sync; this, plus constant talking about how and what I am feeling, is exhausting, and also necessary.

• Finding rhythm: There’s still the somewhat known pathway (continued PT and bodywork; regular check ins with surgeons, PCPs, pain specialists; and additional surgeries including right lower eyelid, left arm, and jaw), and the uncertainty of when exactly these additional surgeries will happen and what recovery will be needed makes it hard to plan — and I’m a planner! It is difficult for life in general and for work re-entry specifically. I continue to do a few hours/week for the New Mexico Human Services Department, am planning to being my grant writing contract work again with a flexible arrangement, and have a couple of other work ideas/discussions going. I am also looking into applying for short term disability and other assistance that might be available so that I don't have the stress of trying to work on top of the full time job of healing and dealing with the other accident aftermath (namely, insurance battles and lawsuit). Balancing all of the appointments, home exercises, scar care, supplements/medications, rest, desires to get back into regular home contributions (monetary and otherwise) is a challenge, though we are managing well. I feel a bit drained all the time dealing with all of this and also want to get back to more normalcy, including more regular socializing, and haven’t yet quite figured out how to balance it all. Calvin was just here for a week long visit and it was very uplifting, relaxing, and comforting to have him around.

• Progress: I continue to re-evaluate and progress in my PT exercises, getting into more and more functional movement, and increasingly using my pilates reformer which feels fantastic. I also continue to have many firsts since the accident, including: driving myself to appointments, getting gas by myself, going on walks outside in the neighborhood, walking out to the chicken/duck run to let the ladies out in the yard, starting a fire in the wood burning stove, going outside to retrieve our escape artist of a doc (Mac), and continuing to do more around the house (cooking, doing dishes, folding and putting away laundry, light cleaning) — oh the simple things we take for granted!

• Insurance battles: We are still fighting insurance and again I can not give sufficient praise for the patient advocate working what feels like a full time job to help me navigate this and fight for what is right. It continues to shock me how challenging this is… I know my situation is pretty complicated, and I also know that it should not be this difficult to get coverage for life saving care and continued care needed as a result. I am working with the patient advocate on nearly a daily basis to problem solve, pull information together, and make payments as needed,

• Lawsuit: The lawsuit is also still moving forward and we have an amazing team working with us but the timeline is quite daunting and uncertain when we will have a resolution.

• On the horizon: We have a fun weekend ahead of going to Ojo Caliente, having Patrick’s brother in town, meeting Calvin at Monarch for a ski day (I’ll, of course, hang out in the lodge), and then will be headed to Denver for more follow-ups and will hopefully get eye surgery and jaw surgery scheduled. I’m looking forward to the ability to plan the next several months and to seeing Colorado family and friends. When we get back I'll finally get to start seeing my mental health therapist again, another thing I'm looking forward to. I finally established with a PCP here in town and she will begin scar injection treatments in late March to help loosen the intense scarring on my face and legs. I also have several upcoming appointments with a pain injection specialist here to release muscle tension, re-establiish structural integrity of my joints, and hopefully stimulate bone healing in my broken arm (ulna) and avoid another surgery.

Wednesday 2/22 - Sunday 3/5

• Few days in Taos: We had a nice couple of days home settling back in once Calvin left, though of course I missed him as soon as he left! Friday 2/24 was Patrick’s birthday and we spent the afternoon/evening at Ojo Caliente, Saturday cleaned house (I even vacuumed - it really took it out of me!) and prepared for our trip to Denver, and Sunday drove to Denver. The drive in general is quite an experience of processing and has been unique every time so far. This was the first time Patrick and I drove it together since the accident, and upon leaving home we weren’t sure whether I would return with him or stay for surgery. We ended up both going to CO and returning home together which felt good.

• Accident site: On the way to Denver, we stopped to walk around accident site and found my hairbrush and another random thing from inside my car along with lots of debris from the accident. It was both numbing and emotional and has grown more so over time as I continue to reflect back.

• Time in Denver (2/27-3/3): We enjoyed relaxing at mom’s house and spending time with family between appointments; Calvin was still in town and left Thursday to go home to Colombia. I’m so grateful for all the time I have gotten to spend with him and my mom during this recovery, that they were both able to in many ways prioritize being there with/for me and taking care of me before I was able to return home. We had a nice dinner out with friends on Thursday before driving home Friday.

• Driving home: On the way home, we stopped to look at my car in the state patrol lot and also saw the car that was hit behind me which resulted in fatalities. It was shocking and breathtaking; I became even more aware of the preciousness and delicateness of life and how I so nearly walked the line towards leaving this human suit behind. The difference in damage between our two cars was both distinct and minute and the feelings associated with seeing all of this continue to evolve. Lots of thoughts swirling around in my head and heart!

• Colorado Appointments: Lots of new information, next steps, and additional specialists involved after the week in Denver - yeesh! No procedures scheduled, which makes the timeline feel longer and unknown but that's sort of expected given how complicated my case is.

  • 2/27 Oral surgeon appointment: I got my hopes up that we would schedule my jaw surgery in June (9 months post-accident as he and my face surgeon discussed and agreed upon), and the oral surgeon is asking that I see an orthodontist first to align my upper teeth before we fix occlusion with the segmental lefort. He said he can recommend someone in Co Springs or Denver and we will also look for someone in Albuquerque.

  • 3/1 Face surgeon appointment: He said that my facial fractures seem to be healing well, though there is evidence of some collapse (plates exposed in upper left gums) and possibly fibrous union due to the number of bone grafts and plates required to repair the significant number of fractures in my face. He continued to relay concerns about the jaw surgery and suggested specific questions to ask the oral surgery team to get at how they plan to handle the procedure given the risks. He also gave me his cell phone number and offered to be called into appointments to discuss my case at any time (he’s amazing!). For my eye, he recommended seeing a specialist for surgical correction of my eyelid malposition which will likely include a skin graft and spacer at multiple levels of the tissue (anterior and middle lamella). Given my pre-existing condition of Sjogren's syndrome and the complicated procedure needed, an ophthalmologist and local oculoplastic surgeon should handle this follow-up. He will refer me to someone in Co Springs and we will look for someone in NM, too. I will see him again in a number of months after the plans have been confirmed for my eyelid and oral surgery.

  • Next steps: Thanks to an amazingly helpful friend in NM, I was given recommendations for oral care and oculoplastic surgeon/ophthalmologist in Albuquerque. I’m scheduled to see the orthodontist on Wednesday 3/8. I’m waiting for my face surgeon to confirm he agrees with the eye surgeon in Albuquerque and hopefully will get a referral there soon. I may also try the Co Springs eye surgeon and on one hand really want to see the person my face surgeon that I appreciate and trust immensely recommends, though on the other hand expect to run into insurance battles and may rather avoid the headache if there is someone in NM I can see.

• Settling back in at home feels both good and hard! This occurred last time I came home that everything that has happened sort of hit me again, and the reality again sets in of what my life is like right now. Im exhausted easily and then sad that I’m exhausted, struggling a bit with feeling like I should be doing more but also know I need to rest and that I am actually doing a lot. I know I have amazing community here and at the same time feel far away from those in Colorado (and Calvin in Colombia) that are so important to me. How lucky am I to have so many wonderful people surrounding and supporting me!

• This week I have appointments in Taos throughout the week and the Wednesday appointments in Albuquerque. My PT that I was really enjoying working with is away for 6 weeks, and the person we switched my care to is fully booked for weeks. My first appointment back with PT is not until 4/5 and hopefully something opens up sooner. I have a good PT routine and think I can figure out how to advance my exercises by myself while I wait to get in. I continue to work with my patient advocate on appeals (we’ve submitted 2 so far and many more to come), to update and work with my attorneys, and to continue to consider working more while balancing all of this plus appointments, my home care routine/needs, trying to have a “normal” life, and resting.

Monday 3/6 - Thursday 3/16

• So much has happened in the last week and a half! I am generally very pleased with how things are progressing and also feel quite lost in the lack of control and exhaustion I feel daily. I will continue moving forward with whatever comes. Today is 5 years from the accident and I’m just happy to be here! It is difficult at times to stay grounded and I’m lucky I’ve gained so many tools to help me with this along the way. We’ve planned a trip to my sister’s condo in Puerto Penasco, Mexico for 4/11-18 and are very much looking forward to a get away!

• Therapy: On 3/7, I finally saw my therapist again which was so lovely and supportive to see her and re-establish in person.

• PT: On 3/10, I got in last minute with my new PT and we talked about how to progress my exercises over the next weeks if I’m not able to get in to see her. I’m increasingly working on balance and proprioception exercises, getting close to single leg squats, doing dead lifts, among many other exercises and continuing a ~30 minute pilates reformer routine. Things are feeling good though I am still having more pain in my ankles, femurs, and knees that I’d like and feel that, while I can do exercises and continue to progress, things are happening slower now.

• Shifting oral care trajectory:

  • Abq trip 3/8: We liked both the orthodontist and oral surgeon; I will need braces 12-18 months as well as a root canal by a specialist prior to having my jaw surgery, with braces to continue for another 6 months after that. Unfortunately insurance does not cover orthodontic work so I was quoted ~$8,000 total over the 18-24 months of braces. They agreed that they would like to discuss risks and concerns with my face surgeon as they, too, are worried about the exposed plate and the health of some of my teeth.

  • 3/12-13: Phone calls with both oral surgeon and orthodontist indicated additional concerns and steps needed. They are working with a trauma doctor and after the three of them met Friday to discuss my case, they have several concerns (many in line with my face surgeon, which feels reassuring): bone density as well as healthy bone vs fibrous union (scar tissue instead of bone-to-bone healing), the exposed plate in upper left gums and plate securing lower left jaw, missing tooth and misalignment (”step”) in upper left teeth, gum density, and general health of several teeth. They’ve ordered a CT scan and then will discuss results as a team and with my face surgeon. The likely pathway will be 1) get braces put on, 2) surgery to remove several plates, fix alignment of teeth that can’t be addressed with orthodontics, and assess bone density including the likelihood of doing bone grafts and osteotomy to adjust the bone alignment in my face/mouth, 3) braces 12-18 months and root canal, 4) segmental lefort surgery to fix malocclusion 5) braces for another ~6 months. I will also need to establish with a periodontist and prosthodontist for their involvement along the way.

• Orthopedic general updates: I saw the pain injection specialist on Friday 3/10 and did prolotherapy on R ankle joint and several trigger point injections in the area. My ankle is feeling much more stable afterward; I will see him again in a couple of weeks, likely to work on my R hip area and shoulders. He has thought more about trying injections in my broken arm to stimulate healing and is nervous about possibility of infection due to the plate, so we will not be trying that unfortunately. My patient advocate suggests switching all care (except the face surgeon) to NM, so have asked for a referral to an orthopedic surgeon in Abq to handle my follow-ups and arm surgery coming soon.

• Eye surgery next steps: On 3/13, I finally got a referral finally to the Abq oculoplastic surgeon/opthalmologist at UNM though cannot get in until June. We are working on getting a sooner appointment.

• Insurance: I continue to speak and work with my patient advocate almost daily; she is beyond frustrated with my insurance situation and continues to reiterate that she has never seen anything this bad/messy. On 3/10, I had a denial processed for my first day in the hospital (10/16) for $858,000. I know this will get appealed and I won’t have to pay, though it is still shocking and breathtaking—and somehow numbing all at the same time—to see such a number! We are getting close to the point of being able to involve the insurance commission. So much gratitude for her help!

• Home front: On 3/10, Patrick and I went to an art gallery opening in town and met up with some friends. This was my first “public” outing in Taos that wasn’t a small get together with friends. It felt very weird and also good to go out, see people, and feel involved in the community again. I was definitely exhausted afterwards and had a lovely relaxing weekend, mostly at home. This past week has been slower because many of my providers have children who are on spring break so aren’t seeing patients; with all the phone calls and coordinating care Monday-Tuesday, it feels right to have a more mellow week (that hasn’t felt mellow at all!). We’ve been enjoying lounging and doing paint by numbers on the couch with the pups. We also continue to go on walks and I’m now up to a little over a mile! We’re headed to Salida this weekend with Patrick’s family, have friends in Taos Sunday, then to Albuquerque Tuesday for Patrick’s nieces 1yr birthday celebration and to see my cousins. Whew!

• Next steps: 4/4 CT scan and oral team follow-up; hoping for oculoplastic surgeon/opthalmologist and orthopedic surgeon appointments soon. I’ve added a section on this page called “current state” where you can easily see where things are, I hope it’s helpful! I also continue to update the timeline at the top of this section. Sending love to everyone out there!

Friday 3/17 - Tuesday 3/28

General Happenings:

• Friday we went on a weekend trip to Salida with Patrick’s family. As my first time staying somewhere other than my mom’s house, I was both excited and nervous for the trip. Would I be comfortable in another space I hadn’t yet seen? Would I forget something important that I need? Would I be able to sleep? It was lovely, cozy, and easy - we hung out at the VRBO house the first night, and in the morning everyone except me and the dogs went up to ski mountain. I enjoyed a slow morning reading by the fireplace and then went up to the mountain for lunch. It was quite overwhelming upon arrival as it was spring break and packed full of people, I was nervous about my mobility on snow and ice, and didn’t have phone service to find the family. I found a place to sit outside and within minutes, Patrick was walking over to join me. We ate lunch with the fam and then P and I decided to go soak at the local hot springs while they skied for a few more hours. We had another nice evening at the VRBO, a slow morning, and then drove home. It was quite a nice getaway.

• On the way home, we stopped at the signs for “Colorado Gators” that we have passed many times and wondered about. It was hard to tell exactly what it was upon arriving, as the entrance building was a small gift shop and you couldn’t tell what the “exhibit” was like. After following the reptilian footprints painted on the floor into a back room, we enter a large area with turtles wandering around on the floor, cages filled with all kinds of snakes and crocodiles, and two kitties sitting on top of the cages peacefully watching everything and hoping to get pet. We soon also noticed a large bird in the rafters above, mocking us as we talked about what we were seeing. A woman quickly walked up to me and asked if I wanted to hold the crocodile - and next thing you know we are posing for photos (here and here) with a crocodile in my hands. I felt like a kid again. After this room, we walked into a huge greenhouse with ponds and amazing succulents and moss in the beams supporting the building. What a cool place - I so enjoyed this pit stop on the way home.

• We were then home for a day and a half before traveling to Albuquerque to see my cousins and go to a Zoo party for Patrick’s niece’s 1 yr birthday. I historically haven’t enjoyed going to zoos as the caging of animals in small areas different from their natural habitats has tugged on my heart strings and at times, even made me angry. This time, however, I felt so filled with joy to be with family that I haven’t gotten to spend much time with, to connect with people, and to see the beauty of all of the animals - their aliveness, the majestic cheetahs, kookaburra singing its wild and overwhelming song, hyenas sleeping on their backs like I have seen many dogs do, elephants excited to eat celery sticks, a guerilla mama holding her baby. It was a cold day and my body did not feel comfortable, there was no ease of movement, yet I still enjoyed the experience and think it even somehow made me cherish my own aliveness. After leaving the zoo we ate lunch at a local favorite (Frontier) and ran into a family friend who we hadn’t seen since the accident; in our catching up he relayed that he is in school and recently wrote an essay about me and the power of perseverance. That sure warmed my soul.

• Since Friday, I had been trying to refill for my lyrica (nerve/pain med) and had a feeling it might be difficult given this is the first time getting the prescription from my Taos PCP (previously getting it from Denver PCP). For whatever reason, this has always been a difficult and frustrating prescription to refill, requiring several visits to the Walgreens pharmacy and long waits. I started tapering myself on Tuesday, taking 1/day Tuesday and Wednesday instead of my regular 3-6. When weather is bad, which it was during this time, I take 6/day. Running out wasn’t anyone’s fault, though the system my PCP uses to send controlled substances wasn’t working properly and didn’t send the script through. Despite my regular following up, the MA at the doctor’s office reassured me that it was processing and I should soon get it. Perhaps someone could have checked why it wasn’t going through. On Thursday, I finally texted my PCP and by Friday afternoon was able to get the refill. I was without my proper dosage from Tuesday-Friday and am surprised by how much I was affected though it is good to know that I need the prescription but at the same time don’t like being dependent on something. My energy was sucked out of me and I had a hard time holding my body up, everything hurt, but in a different way than back in the hospital when I started taking it; it was originally prescribed to help with my excruciating and unrelenting facial pain, which thankfully did not come back this time. Instead, I was feeling depressed and anxious and simply in pain all over and with no energy, so it was a miserable week.

• Saturday I finally started feeling like myself again, and two good friends from Denver came to town for a quick getaway. We had brunch at a new favorite spot, Sabor Real, and it sure brightened my mood and filled my cup to see friends. Patrick and I then did house projects and ran errands and had a nice relaxing evening at home, finishing our paint by numbers that we’ve been working on. Sunday I finally felt strong enough to get back into my home PT and did my routine again for the first time since Wednesday.

• Lately I’ve been reading a lot and so enjoying reading for fun again. When you’re in school and also working, there’s little time for pleasure reading. I was looking forward to more time spent in the world of books after finishing my MPH in July. My new routine is reading in bed in the mornings with my coffee and simply relaxing; my nervous system is happy in these moments and I have a deep knowing that this time spent is right. I’ve recently read The Song of Achilles, Roadside Attraction, The Scent of Burning Flowers, and am now on to Turtle Feet and am reading a poem a day from Consolations: The Solace, Nourishment and Underlying Meaning of Everyday Words. While doing PT, I often listen to audible and am currently switching back and forth between Exhalations, Rest is Resistance, and Pleasure Activism. I’ve also been loving poetry and added a section to the website called “inspiration” below where I’ll share what has been guiding and inspiring me.

• I met with two writing coaches last week and know while it is not the right time for me to add more to my plate, that they would both be fabulous resources for me as I think about writing a book about my experience. I was reassured that I’m doing the right thing by focusing on my healing and writing about whatever comes up.

• The feeling of not having control is overwhelming and at times, I feel like I am drowning in it. A dear friend recently said, “That's the other thing with time and control...that feeling when you're ready and anxious for things to happen so you're looking toward the future, but the universe has also been trying to tell you that now is all we have so you have to balance your outlook with relishing in whatever you're blessed with right now.” I am constantly reminding myself of this and trying to enjoy the present, and most importantly the simple fact that I am still here.

• Insurance: we’ve finally made some headway on the insurance battle, thanks to my patient advocate’s tireless efforts and my cousin who was able to connect with leadership at BCBS NM. They were shocked about my situation and immediately saw many faults in the way my case has been handled, promising to fix things and also to do an internal review of my case to improve the many fail points in their system and processes as evidenced by my situation. I have been FINALLY assigned a case manager and spent about an hour and a half yesterday getting them up to speed. According to them, there is absolutely no reason why someone in my situation shouldn’t have already been assigned a case manager to help. I still have many outstanding bills and threats of being sent to collections, but am hopeful that the situation is on its way to being resolved, though I don’t expect it to happen soon or for my work with the patient advocate almost daily to stop. Of course, this also makes me realize how privileged I am to have these connections and support and wonder what this experience would be like for someone without that. I can hold both optimism that the system might change due to an internal review of my case and also frustration knowing this is simply a microcosm of the bigger picture. 

• On the Horizon:

  • 4/4 to ABQ for CT scan and orthodontist appointment, oral care team (orthodontist, oral surgeon, trauma doc) will review my CT scan and discuss with my face surgeon, we should hear from them with a plan the following week for surgery, orthodontic, and other oral care plans.

  • 4/11-18 Mexico trip

  • 4/20 to ABQ for evaluations with my new oculoplastic surgeon/ophthalmologist and root canal specialists

5/1 to ABQ for orthopedic surgeon evaluation for my non-healing ulna fracture (L arm). am very much looking forward to learning more from all of these appointments, am hopeful that the next several weeks will provide more clarity and even a plan for next steps.

Wednesday 3/29 - Thursday 4/13

Fun outings, my birthday, and ABQ appointments:

• On 3/31, we went to an alien/cowboy themed birthday party for our friends where we DANCED (photo here). This was my first time dancing, I was happy to have the cane with me, and wow did it feel good to move! I certainly cannot dance like I used (yet!) to but so enjoyed moving this body to music. Then on my birthday (4/1) we enjoyed going to Ojo Caliente for a soak and nice lunch, followed by another costume dance party at Meow Wolf with several DJs (photos 1, 2, 3). We ran into many people I hadn’t yet seen since the accident which felt very yummy and heartwarming, and dancing twice in a few days was such a milestone. In many ways it felt like my first birthday and what a way to celebrate.

• Then we were home for a day and I had an appointment with my energy work/movement therapist, then went to Albuquerque for back-to-back family get-togethers with both of our families followed by two appointments Tuesday morning (4/4). On the way to Albuquerque, I received a voicemail that my CT scan Tuesday morning was not approved - I spent hours on the phone trying to figure this out, it was scheduled 3/16 so there's no reason we shouldn't have approval. It seemed that because my oral surgeon has both a private practice and works at UNM where my surgery will take place, both offices were arguing with each other about who needed to file the paperwork to get my scan approved. Why am I just finding out less than 24 hours before the scan was to happen? I can’t say. Why didn’t someone simply submit the necessary paperwork in time for me to get approval? It makes no sense. I had to stick with my gut and the motto that I believe, in part, has gotten me where I am today: the insurance and healthcare system failures will not get in the way of my continued care. I spoke to both offices, my insurance, and my patient advocate several times each trying to remedy the situation with no luck. I ended up getting the scan without insurance approval.

• After that appointment, we picked up three 1 yr old hens from my cousin to take home and add to the flock - very exciting (photos here and here). Then we hurried to an appointment with my orthodontist to do more x-rays, photos, and imprints of my teeth so they can create 3d printed models of my jaw to use with the CT scan for planning purposes. She made a joke about how that morning she was listening to an interview with the government official who organized the Osama Bin Laden attack, and that something like 80% of what went into the successful outcome was planning. She felt that this strategy applied to my case. In follow-up, she texted me that they are concerned about my missing tooth on the upper left and need old x-rays to compare with; I’m in the process of hunting them down. They are also concerned that I have a fractured lingual cusp on my mandibular left second premolar (jargon, I know) which will need to be addressed. The orthodontist, oral surgeon, and another trauma/oral surgeon will discuss my case on Friday (4/14) and get back to me soon after with proposed next steps.

• When we got home from Albuquerque, I fell asleep on the couch almost immediately after eating dinner and slept for over 12 hours. I know that my energy is precious and I am conscious of the need to listen to my body, set boundaries, and take care of myself. I think this was a sign that I did too much in a short period of time - one lesson is to not fill up the time in Albuquerque when traveling for appointments, though it is tempting because we have so many people that we love and miss and want to spend time with.

Taos appointments:

• I've had a massage, saw my energy work/movement therapist, had two pain injection treatments (focused on my shoulders, rib cage, and pelvis), as well as chiropractor/myofascial appointments. I am feeling continuously grateful to have this amazing support team working together in Taos.

• I finally saw PT again and we increased my exercises to include lunges, step-up lunges, single-leg deadlifts, and single-leg squats using a chair for minimal support. I did this two days in a row (notably the day of and after getting pain injection treatment) and then woke up in the middle of the night with screaming pain in my pelvis. Luckily, I had an appointment with my chiro the next day. She was surprised at how locked up my pelvis was and suggested that my new exercises are too much until the stabilizing injection treatment I had just a few days ago can set in. So, until my pelvis stabilizes, I needed to back off from the new PT exercises. I took Friday-Monday off of PT completely and started back Tuesday with my previous set of exercises (no lunges, no single-leg deadlifts). 

• Healing is my top priority right now and it can be hard to find fulfillment in doing the same exercises without seeing much progress. I realize I am making amazing strides every day and it is noticeable to other people, but because the daily progress is somewhat unnoticeable to me and combined with having to back off from new exercises, my sense of fulfillment is a bit dulled. I am constantly reminding myself that I am resilient, powerful, and whole in the midst of feeling somehow incomplete. It is a constant battle to wake up with daily reminders as so many parts of this body don’t feel as I’d like or even in some cases, like my mouth, don’t feel like they belong to me. I am, as I have said before, a mosaic of grief and joy. The joy most times overpowers the grief, with overwhelming gratitude in simply being alive and surrounded by life and love, and also often stricken with waves of overwhelming grief that I allow myself to experience and let pass. 

More general happenings:

• I took the dogs to vet by myself which felt like a huge accomplishment. We decided, for many reasons, to cancel our Mexico trip and stay home with the hopes of feeling more grounded, nesting, doing house projects, and hopefully getting to visit my mom. We got a kitty (Umi - photos 1, 2, 3) and are working on getting her and the dogs to feel like family to each other - slow but steady progress! We (mostly Patrick) also extended the chicken/duck run to give them more space (see here and here)- I was able to help some and while doing so, again battled the frustrations of what I still cannot do with the celebrations of what I can. We’ve been blessed with clear, sunshine days, with minimal wind. Getting out in the sunshine is a sure way to brighten my spirits.

• I enjoyed going to an Easter brunch at a friend’s house and we also hosted friends for dinner one night. Getting back to more socializing feels great and I am also constantly trying to pay attention to my energy and get the balance right.

Insurance: 

• The insurance saga continues and thanks to connections to the BCBS NM Chief Medical Officer (CMO), my case was escalated to their attention. Friday I got a call from the CMO, the Director of Medical Services, and looped in my patient advocate. They were very apologetic about my situation and within about 6 hours were able to take care of the pending air ambulance and UC Health hospital bills totaling about 1 million dollars. Finally! It is shocking that they could remedy these pending denials so quickly and frustrates me to think about how broken their system is. They, too, seemed more frustrated by how easy it was to fix. We also discussed sending them documentation of all of the big hurdles and how my patient advocate has experienced other insurance handle them better, so that BCBS NM can learn and improve for other patients. At that time, it felt very promising and a big relief. We did the promised follow up and had to push to get a reply, which is not only disappointing for my case but also makes me cautious about the optimism I was feeling… that my experience may have a positive influence on BCBS NM’s future operations. BCBS NM needs to make serious changes to improve their processes, computer systems, etc. - I feel committed to making my case more publicly known when the time is right in the hopes of pushing for necessary change in the system.

On the Horizon:

• 4/16 Accident 6 month anniversary

• Week of 4/16: expect follow-up from my oral surgery team about next steps

• 4/20 to ABQ for evaluations with my new oculoplastic surgeon/ophthalmologist and root canal specialists

• 4/24 Patrick and I celebrate 7 years together

• 5/1 to ABQ for orthopedic surgeon evaluation for my non-healing ulna fracture (L arm)

I am cautiously optimistic about having a plan for next steps after these next few weeks of appointments and follow-ups. I have had my optimism crushed several times by imagining that I will come out of appointments with a plan, only to find that we need to gather more information or more specialists need to get involved. I am learning to hold optimism, caution, and curiosity simultaneously to help me manage the feelings of uncertainty and lack of control over what happens next.

Thursday 4/14 - Friday 4/28

General happenings: 

• Patrick and I have generally been enjoying nesting, doing house improvement and art projects, and just spending time at home when we he isn’t working and when I’m not bouncing around to my many appointments in Taos and Albuquerque. Umi (our new kitty) is slowly warming up to the dogs and increasingly spending more time out around the house, which is a fun transition. We sure love our animals.

• Over 4/15-17, Patrick’s dad and partner came to visit with their two new puppies; I hadn’t yet seen them since the accident and it felt so good to hug them and spend time together. Patrick and his dad built a new latilla fence around our hot tub, making it a much more private experience. It turned out beautifully!

• 4/16 was my 6 month accident anniversary, and I posted this on Instagram in honor of the day. I went to a clothing swap with some friends and it felt like a lovely way to celebrate life, get new-to-me clothes, and walk away with several fun items that honor my new body and beauty.

• We’re starting to prep our garden beds and are seeing the baby growth of some of our perennials - I’m so looking forward to our vegetable and flower gardens. I find nourishment in working with the earth and feel refreshed and alive with the sunshine on my skin. It is especially fun to garden and do yard work with the chickens and ducks running around. Yay for Spring!

• 4/24 we celebrated our 7 year anniversary with a slow morning, delicious breakfast (biscuits with bacon, cheese, green chili baked inside and an egg baked on top; homemade duck egg hollandaise), relaxing afternoon, nice dinner out at Aceq, and then went to a concert (Vieux Farka Toure).

Medical and recovery updates:

• Eye: 4/20 I saw the new ABQ oculoplastic surgeon/opthalmologist to assess my right lower eyelid healing and surgery next steps. He was happy with how well the scar tissue is healing and wants me to continue working on it daily; he does think I will eventually need a graft and spacer surgery to repair the eyelid tissue. He is going to collaborate with the oral surgery team and try to combine this surgery with one they are planning. It will feel good to have one less procedure if we’re able to combine.

• Oral care / oral surgery prep:

  • I heard on 4/19 from the oral surgery team that they are waiting for 3d prints of my jaw to look at with my recent CT scan for a surgical planning meeting and will follow up after that.

  • 4/20 I saw an ABQ root canal specialist per the oral surgery team’s referral. He is worried about the health and viability of several teeth, mostly on the upper and lower left, but it is hard to know for sure because of the numbness and likelihood of removing/losing teeth in the oral surgery process. My front left tooth which was pushed back due to my facial trauma and became darker in color is likely to stay so we decided to do a root canal and bleaching to bring it back to its original coloring. He will stay in close communication with my oral surgery team about other teeth at risk as we go forward.

  • 4/25 we went back to ABQ to start getting lower braces and to do the root canal and bleaching. It was a big teeth day and also high cost with limited insurance coverage - ~$10,000 total. The orthodontist is estimating a total of 24 months of braces, the reality of which is just starting to set in. Ahead of the appointments, I was feeling excited by having some clear next steps and to be moving forward. The root canal/bleaching was painless and easy, but the braces are quite painful and feel like a constant reminder of the accident. The pain/reminder, plus the realization of having braces for the next 2 years, is shocking to my system. I know this will pass and despite struggling with it all, am still very pleased to be moving forward.

  • My orthodontist talked a little bit about what she thinks are the next steps for my oral surgery and explained that the oral surgeon is bringing in other specialists outside of UNM to consult with him on the surgical plan; I am still awaiting an update. She relayed a bit of the plan from what she understands, which includes increasing the wire strength on my lower braces to set a solid foundation for the upper jaw to fit on, adding brackets to my upper teeth so that after the first surgery we can “wire” my jaw shut for a period of time. I audibly groaned when she said this (they were putting my braces on at the same time so I couldn’t talk), and she quickly specified that it would be with rubber bands and not wire so more gentle than it sounds. I was not expecting this! It sounds like this will happen after my next oral surgery, though no plans have been finalized. She also explained that they are thinking they’ll have to break my upper jaw in 4 pieces in order to fix the alignment; this type of segmental lefort surgery is not something they like to do due to the complexity but they have done it before. It is so hard to navigate getting information piecemeal, be able to both get my hopes up and to quickly let things go and shift to the new plan when more information is available.

• Weekly appts and home PT: I also continue weekly-ish PT, chiropractic, massage, energy work/movement therapy, and pain injection specialist appts in Taos. I’ve started speedwalking (30s on/30s off) and plan to start swimming for PT this weekend. Happy to be adding more variety of activities to my training routine.

• Insurance: While the BCBS NM leadership connection has been extremely helpful (they overturned $1M of my bills very quickly), they have not met our hopes/expectations for all that they would help with. We are now back to submitting the remaining appeals for several key steps in my care (for example, surgeries have been paid for by insurance but the anesthesia has not). It is such a messy situation and I am learning more than I ever imagined possible about how broken the system is from the way providers submit for insurance approval, to the way the insurance system automatically processes such bills, to the difficulty in communicating with someone from billing or insurance about complicated claims, and on and on. It seems common sense that someone with several broken bones would need follow-up x-rays and CT scans, yet getting approval is not straightforward. Then the bills that I receive from a provider do not match what is in my online insurance portal. There is no question in my mind that I would not be able to navigate this without all of the support I am so lucky and grateful to have; I know that so many people do not have such support and it is hard to fathom what they experience when I, with all of the support that I have, am nonetheless having a very difficult time managing all of this.

• Work/Income: I still do not have the capacity to work very much and am spending a very small amount of time each month on a couple of contracts that I had before the accident. I’m thankful to work with such supportive and understanding people who give me the space that I need to heal and the space to do a little work on the days when I feel I have the capacity. The feeling of not being able to show up in my work as I did before is still hard for me at times, but I know I am focusing on what I need to right now. I applied for short-term disability at the beginning of the year and am hopeful it will come through eventually, though it looks like it could take several more months to know.

On the horizon (you can see a full picture timeline at the top of this section):

• 5/1 non-healing ulna fracture assessment at UNM, assess bleaching and get permanent filling in front L tooth

• 5/3 finish lower braces

I’m so looking forward to warmer weather and outdoor activities: gardening, hanging out on the sidelines while friends play volleyball at the park, going to the river, camping, and generally just spending time outside! 

Saturday 4/30 - Tuesday 5/16

Medical updates and constantly shifting plans:

Mouth:

• As of 4/25, I now have lower braces to set the foundation for my upper jaw to fit on. We finished getting them in place on 5/3 and set another appt on 6/14 to increase the wire strength once more. In my appointment on 5/3, the orthodontist told me she knew the oral surgery team had done a surgical planning meeting using software to assess possible outcomes of removing different plates, teeth, etc. She did not know the plan that was made, only that the meeting happened. She said we will need to put top braces or only brackets on before the first surgery and it was likely we could do that on 6/14; she also relayed hopes for surgery #1 to happen this summer but no promises.

• On 5/4 (not even 24 hours after the orthodontist appointment), I got a text message from my orthodontist’s medical assistant letting me know that I need to go back to Albuquerque on 5/24 to add top braces in prep for an appointment with the oral surgeon later that day. The text said that both appointments needed to happen on the same day and to let them know if I have questions. I asked for more information about the plan but was told that they didn’t have that information. I wish I knew more about all of this but right now, that’s all I know! At this time, I was still hoping for surgery 1 (exploratory face/mouth surgery including removal of hardware and possibly also teeth, bone grafts and osteotomy, as well as the eye skin graft and spacer surgery if the two teams can coordinate) to take place this summer.

• On 5/10, I got a call from UNM Ear Nose and Throat/Oral Surgery scheduler. The person I spoke to said that she was calling to let me know they had to change my surgery date. I told her I was unaware I had a surgery appointment at all, we both laughed, and she said that my original surgery was 7/21 but the OR spot is no longer available so I am now scheduled for 8/17. I told her I had an appointment with the surgeon on 5/24 and we agreed that we hope I get more information about the plan at that time.

• On 5/12, I went back to Albuquerque to again assess my tooth bleaching and next steps. The color of the tooth has significantly improved (it was quite purple before and is looking much more normal colored), but he suggested doing one more round of bleach. He replaced the current bleach with new and I will go back on 5/24 to get the permanent filling.

Left arm:

• On 5/1, I saw my new orthopedic surgeon at UNM. As I expected, my left ulna fracture is still not healing well (non-union or slow-union) and I continue to have regular pain and discomfort when using my arm and also when resting. They want me to wear a splint to protect my arm when doing riskier activities (like floating the river) and I have been given a 10 lb weight limit, which will take some time and mindfulness to get used to (SIGH). She was surprised that I am still experiencing numbness in my middle finger but did think it likely that feeling will come back with more time. They've also prescribed me a bone stimulator machine to use at home every day and to find a home health organization to come set it up. I immediately was concerned about this referral as I could not even find a home health organization to provide care for me when I was in Denver, so I expected even more difficulty in Taos. I spent the next week trying to track one down and it felt nearly impossible to find a company that services Taos, is covered by insurance, and has the equipment needed. I reached out to my care coordinator at BCBS, with no luck. Then I reached back out to the UNM orthopedic team and they were able to get me in touch with a company in Albuquerque, and I picked up the machine on 5/12. As explained to me, the machine sends electromagnetic waves into the area of concern to excite osteoblast cells causing them to split and lay down new healthy bone cells. I need to use the machine for 30 min/day at around the same time every day. I told my PT about this next step and she was not optimistic about seeing results with the machine and shared my frustration at the situation. I so wish they would just do the bone graft surgery to get me closer to having my arm back… regardless of my desires, I will use the machine as prescribed, take care with my arm, and see the surgeon again on 8/7.

Insurance:

• This past week I also received several phone calls from the air ambulance company that my helicopter bill has still not been paid and they need information from me to file an appeal with insurance. My patient advocate and I were both very confused and frustrated and reached out to the BCBS NM Chief Medical Officer to see if she could help. She said it had been paid in full and to put her in contact with the helicopter company. I spent several hours this week trying to get a handle on a bill that I was promised had been taken care of.

• We are also working on several other appeals and had another long phone call with UC Health billing to get a handle on the almost 20k showing as past due on my account. We again got my account put on hold while we work with insurance and while UC Health assesses the appropriateness of their billing.

• My patient advocate has relayed hopes of getting me set up with a situation where I can simply go see a doctor when I need to without an insurance hassle nearly every time. I have full confidence and trust in her and again, do not know what I would do without her support.

Other general care:

• My chiropractor thinks I will need to see another chiropractic specialist in Albuquerque for my upper cervical spine misalignment that is causing headaches and nerve inflammation at the back of my skull. I have seen this specialist for previous whiplash injuries and she has helped immensely. I’m working on coordinating an appointment with her sometime when I’m already going to Albuquerque.

• My chiropractor and massage therapist both said beautiful and inspiring things about my body in recent appointments: 1) my body has an inherent knowledge of how to make itself whole again with all the trauma and in many ways, new-ness of my body; they are just tapping into the wisdom it already has. 2) my deep leg scar tissue “could bloom”, that they are now more “together, with”, “part of,” my body, instead of feeling like a separate thing as they have felt in previous sessions.

• My chiropractor shared an article with me about the UC Health Hospital Team coming together to care for many individuals injured in the Colorado Springs Club Q shooting. Wowee is this article moving and many of the people mentioned are names I recognize from my own experience at UC Health. If you feel like an inspiring read and possibly even a cry, I highly recommend reading the article. 

• I have had several very helpful sessions recently with behavioral and naturopathic/holistic health providers - I’m lucky to have such robust support! We’ve focused mostly on my general feelings of overwhelm and difficulty processing everything that is going on (it feels as perhaps everything that has happened to me is finally catching up and starting to set in), feeling at times like it is hard to relate or that I don’t belong (I’m an alien!), and how it will serve me to lean into these feelings, grieve more, and let it out. I am spending most of my days stuck in sympathetic mode (fight or flight) and have many tools to tap in to in support of switching to parasympathetic (rest and digest). I know there is a lot of integrating that I need to do, both alone and with support of providers, to move through all of the trauma and continued stress of my recovery.

• I continue to see my PT every other week and they are very happy with how well I am doing in general. I am a bit frustrated with the slower progression of mobility, but also recognize how much I have and continue to progress. I am eager to be able to run and jump! To get back to playing volleyball! To chase my doggies around! One day at a time…

Medical next steps (in addition to my regular weekly appts in Taos, the following are all ABQ appts):

1. 5/24: add top braces brackets; remove bleach and get permanent filling; oral surgeon follow-up

2. 6/12: periodontist (gum tissue specialist) eval

3. 6/14: increase wire strength in lower braces

4. 7/14: prosthodontist (dental implant specialist) eval

5. 7/20: eye surgeon follow-up

6. 8/7: arm surgeon follow-up

7. 8/17: oral surgery #1 plus eye skin graft surgery (I hope)

Life happenings and reflections:

• I’ve been really enjoying spending time outside now that days are warmer, setting up the gardens and doing gentle yard work. It feels huge that I can even do this, though of course it is much harder than it used to be and I need to rest afterwards. I do yard work on the days when I am not doing PT at home and on PT days, still try to get some outside time for daily vitamin D.

• We went swimming at a local gym and want to make this part of our weekly routine - though routine is hard when you have random appointments all the time! We have goals of regular swimming and going on walks with the dogs and are figuring it out while listening to the need to also rest.

• I have had a realization this last week that life is almost harder now that I can do more regular activities - there’s a strong desire to return to “normalcy” yet, in many ways, I do not feel normal at all or even sometimes like I don’t belong. When I was in the hospital or even at home with more limitations, I knew what I was doing every day, what I could and couldn’t do. Now that I can go to the grocery store, run other errands, etc., it is almost more in my face the many ways I am still so different, both right now and for some time — and in many ways, a whole new person after what happened. Here’s an example to highlight what I’m talking about in action:

• We went to another concert at Meow Wolf with Patrick’s brother and partner and a friend from Taos. Such fun to dance and to spend more time out with family and friends! I had a weird interaction with someone at the show… we were dancing on a platform area off to the side of the dance floor where we could see the stage and not be in a crowd. A woman stepped up in front of me with no notice that I was already standing there. She invaded my space, something that is not at all uncommon at concerts, though I felt immediately triggered. She had her back to me and was dancing wildly with her friends down below. I felt the urge to push her… I put my elbow in her back and gently pushed her off the ledge. She was not happy (of course) and sort of came at me like she wanted to fight. My thoughts were, “You have no idea what I have been through! How hard I have worked just to be here!” I was a bit overcome with both anger and sadness. I didn’t like even having those thoughts, or feeling like I am owed something, and then had another realization of what I might look like to someone else. I feel, at times, like my face is off putting and wonder what she and others thought when they looked at me. Patrick recognized all of this, and held me from behind while we danced… and then I realized we both had silent tears streaming down our cheeks. He held and supported me and then would let go at just the right time, as if empowering me to stand on my own and be strong. Whew. I am thankful for my partnership through this strange existence.

• Despite all of these challenging feelings and the difficulty of re-integrating, I am doing so well! I feel inspired, grateful every day simply that I am here and for much more than that, and mostly move through my days feeling joyful. I continue to work on letting my feelings be what they are and appreciating them, leaning into whatever thoughts and feelings come, and letting myself grieve, while also knowing so deeply that life is good.

Friday June 1st - Wednesday June 7th

• Had a lovely friend get together at the park with some volleyball :) Our volleyball park nights are such a yummy community that fills my cup.

• I enjoyed doing some errands, gardening, and household chores while I still had use of both arms.

• My mom, brother, and brother’s partner arrived Saturday and we all went to Hotel Luna Mystica’s office opening party in support and celebration of Patrick and his business. Sunday we went on a nice flat hike, my longest yet so another milestone in my mobility progress. We made yummy enchiladas for dinner and a long time fried came over to watch the Nuggets. Monday was mom’s birthday and we took her to lunch, shopping for a new hiking backpack, and enjoyed spending time at the house and prepping for my upcoming surgery. We’ve been doing a family meditation challenge/mutual inspiration group and have been taking turns with our morning meditation in our yummy cultivated garden area (see here and here). It is so wonderful to be together again and have them here; I sure feel loved, well cared for, and in great company.

Surgery update:

• Mom, Calvin, and I headed to Abq for surgery and Patrick and Silvana held down the fort at home; I’m lucky to have all of them here to cover all the bases! We weren’t sure if we’d end up needing to stay the night so were prepared for all options. We checked in at 2 with surgery start time of 3:30 but due to delays didn’t start surgery until 5.

• Mouth/face: This surgery was performed by the second oral surgeon working on my case with my primary oral surgeon; I was happy to finally meet her and that she was able to make this surgery happen at the same time as my arm. She removed two plates from upper left maxilla and a few additional screws. Today I’m swollen (see here), in some pain, and back to a soft diet but nothing I haven’t dealt with before.

• Arm: They removed the plate in my left ulna and added a slightly longer one for more compression; they didn’t think a bone graft was necessary and it will heal with assistance of the new plate.

• Surgery finished at 6:15 and I discharged a little after 7. My nurse commented that she’s never seen someone come out of anesthesia so smiley - I do remember being happy to see her. Mom and Calvin were there to pick me up with a fresh juice from home with protein powder and a blended Thai soup. We had comfy blankets and pillows and a silly stuffed animal a dear friend gave me in the hospital; I stayed comfy, cozy in the car despite driving through treacherous storms all the way home. Big thanks to Calvin for calmy and safely powering through to get us home by 10 pm. We were all grateful and happy to be able to get home after surgery. 

• During surgery, I was under general anesthesia and also a nerve block for my arm. The nerve block did not wear off until the middle of the night, so my arm felt like dead weight and not even connected to my body until gradually reminding me of its presence with throbbing, dull pain. I didn’t sleep very much, waking up every hour and a half or so and then increasingly in pain as the morning came. The pain has not let up and the Taos pharmacy doesn't yet have my new prescriptions but luckily I had a stash saved from before. I'm adjusting my meds to get better control of the pain. Regardless, I am happy to have the step past and to be home. Being in pain and being back to a soft food diet are nothing I haven’t already dealt with and know how to manage.

• I enjoyed sitting in the sun this morning and breathing through pain in the garden with our birds (see here). I'm resting up and being a good patient!

Thursday June 8th - Tuesday June 20th

Medical updates:

• Surgery recovery:

  • My arm pain was talking the loudest in the first few days post surgery, and when I finally got it under control, my face pain started talking more but nothing horrible or not manageable; It is fascinating to me how pain shifts and it seems one’s brain can only listen to so many signals at one time. When I was in the hospital, my face was consistently (and constantly) the worst pain I experienced. I am so happy it did not come back like it was and of course, I had no idea what to expect. As of Sunday 6/11, I’m fully off pain meds again and feeling better every day.

  • I thought the arm recovery would be easy, because I’ve had basically the same arm surgery already, but I didn’t take into account the fact that I was bedridden last time. And then, when I was able to begin getting up and moving again, I was still in a cast past my elbow for some time. This time, I am in only a splint and left the hospital with little direction from the surgeon. I have been trying my best not to use my arm and hand, and wearing the sling often so that I don’t use it accidentally. I am still able to do quite a lot, and I’m constantly learning work around to do various tasks, like carrying things in my armpit, or in my sling, and being mindful with my movement.

  • My face has not been bugging me as much as I expected, so that is very positive. I did have a horrible dream one night that part of my jaw broke off; it brought back those strong feelings of, "this mouth does not belong to me" that were so persistent in the beginning and creep back in every now and then. While waiting for the sutures to dissolve, I remained on a soft food diet and used numbing gel to help with pain/discomfort. The sutures fell out Monday 6/19.

• Mouth:

  • 6/14 Orthodontist appt went well. My lower braces are now at the wire strength they need to be for surgery, so now just monitoring them and continuing to progress the top. She thinks only a few more times and the top will be there too, depending on how things move. I asked about the 6-9 month surgery timeline and she made it sound like the August 17 date is still being held as a possibility 🤷🏼‍♀️ I will definitely know more after seeing my primary oral surgeon 6/20. Last I saw him, he told me not to pay attention to that surgery hold, so I’m a bit confused and cautiously hopeful. The orthodontist also said my secondary oral surgeon who did last week’s procedure told her my facial fracture has not healed where they took the plates out, so it is extra good they came out to reduce risk of infection with a non healing fracture, and they are going to re-break there anyway so not a big deal but interesting to know. One of the teeth at the fracture site is more stable than they thought so that’s good news too. Big update and things are always changing!

  • 6/20 Oral surgeon follow-up: he is very happy with how the mucosa is healing and confirmed the information the orthodontist heard from the other oral surgeon; he was reluctant to say anything about the timeline for surgery or post-surgery expectations and thought August 18th was an unlikely date. It was a very quick appointment! He did say recovery is typically about 6 weeks until feeling normal ish - first two weeks bad, second two better, last two getting back to normal.

• Arm: 6/20 Orthopedic surgeon follow-up went fine, everything’s looking good and I will see them again in 4 weeks. I say them because I saw a different person again this time 😅 so far that makes 2 PAs, 1 Resident, and the primary Surgeon (who I have seen for less than 10 minutes total). I can/should have perhaps already started moving my arm around to not lose range of motion. So here we go! I can also start weaning off the splint around the house and whatnot but should continue to use it for protection. I’m a bit frustrated by only hearing this information now, more thoughts in reflections below.

• PT: I took a week long break from home PT to rest post-surgery and am back at it doing a subset of my exercises that don’t use my arm. I’m waiting to see my PT again until 6/22 (after the surgeon follow-ups) so I better know my restrictions. PT with insurance can only work on one referral at a time and our current one is for a femur fracture - just another part of the messed up system that doesn’t recognize a whole body as interconnected and rather as $$. Luckily, I know the arm exercises from before so can do them by myself.

• Insurance: is still quite a shit show, though we have made amazing progress. We thought we were out of the woods and passed my 2022 and early 2023 bills yet for some reason big ticket items keep showing up as having been overturned after they were already paid. This makes absolutely no sense and comes with little documentation from Blue Cross other than the fact that it is no longer paid. My patient advocate is doing all she can to help remedy the situation, including many emails to the Blue Cross leadership who have promised to help with the situation, though often does not get a reply until threats are made of going to the insurance commission. This is completely messed up.

Life happenings and reflections:

• My family was here all week post surgery, and we just enjoyed spending time together inside and outside at our beautiful home.  It was so lovely to be all in the same house again! Patrick and I are increasingly grateful for the peaceful space we continue to cultivate at our home in Taos.

• Friday 6/9 Calvin and Silv left and Patrick also went away for the weekend, so I got some nice alone time with mom over the weekend until Patrick returned Sunday afternoon. We, well mostly she, did a lot of gardening (I did some one handed until I’d need to go lay down), we watched Sleepless in Seattle, and really were just happy to get such quality time together again - we had only seen each other once and for only a few days since I moved home at the end of January. On Monday, my mom decided it was time to go home, so we thought it would be OK if she took my car to Albuquerque and then when Patrick and I went for my orthodontist appointment on Wednesday 6/14 I would drive my own car back given that I’m not on pain meds anymore. I did a “test” driving to a massage appointment on Tuesday and didn’t think about how different driving with one hand is! What an opportunity for a mindfulness exercise as you have to focus only on driving, no looking at your phone so sticking mostly with the music you choose at the beginning, only able to very carefully pick up a water bottle. The drive home from Albuquerque went fine and Patrick followed me to be sure all went ok.

• Watching the Nuggets win the NBA finals was amazing. I cried! They are such a beautiful team of humble and kind individuals that show up and play as a unit. It sure made me think about and miss my dad as he would have LOVED seeing his boys take home the trophy.

• I’ve been reflecting more on my surgery experience now that I am farther out and what a dichotomy it is between my experience with Co Springs and NM surgeons. I developed deep relationships with my surgeons in Colorado Springs, both while in the hospital and in my follow up appointments and I do not feel that at all with my current providers. My arm surgeon, for example, I met in my new patient appointment for about three minutes total and mostly talked to her PA for the remaining 10-ish minutes that I was there. Then pre-surgery saw her for maybe 30 seconds, exchanging only a “you ok?” and hearing the plan from the resident surgeon, with no sighting post-surgery from her or the resident. In my follow-up appointment, I saw yet another new PA. My secondary oral surgeon I had not met prior to surgery day and on the day of, she was running late; similarly, we spoke for about a minute prior to surgery, and I also did not see her afterwards. I got discharge paperwork with somewhat clear instructions from both surgeons - no heavy lifting, pulling, or pushing for my arm (no shit!), no instructions about wearing the sling or not, nothing else; for my mouth, “softer than scrambled egg” diet until the wound heals but unsure if this means until sutures are out or what exactly. I will say that my primary oral surgeon does take his time with me in our appointments and I feel like we are getting to know each other so not to say, it is all going to be this way, or that it already is all this way, but reflecting on my experience specifically with surgery and the orthopedic team in general, it’s quite interesting to see such a stark difference in what I might call “quality of care” or at least “patient experience” from Co Springs to Abq. Or perhaps it is more related to the experience of being admitted to the ICU with this unforgettable story and the chaos of meeting my care needs, and ensuring I survived, for days on end that made me feel close to my surgeons, PAs, nurses from Co Springs and they to me. Regardless of the explanation, not getting to know the folks taking care of me and them not knowing me sure makes the lonely feelings associated with this recovery stronger. It is a bit isolating to go through this, and I find community in many of my providers, but not so much with these new ones. If in every appointment with the orthopedic team, I am meeting a new person who has no history of what happened to me, where am I to find the holistic, person-centered, communal feelings I long for?

• Since surgery I have been feeling a bit overwhelmed by how much space I realize (once again) that I am taking up in other people's lives. Having my family come here to visit and then help post surgery was amazing, I am so lucky to have the support that I do. I know that Patrick envisioned at this time in his life he’d be exploring new jobs, perhaps going to school, growing in different ways and has essentially put all that on hold. I, too, have put my life on hold due to this accident and all that recovery requires of me. I know that this realization and associated feelings are all part of my grief and that it comes in waves. I had a wonderful talk with my massage therapist about this and she brought up the idea of polarity and thinking about, “well, if I were to not take up so much space, what the opposite of that look like?” It might mean to disappear and wow that would not feel good or right either. A helpful exercise. I know that I am not taking up the space by choice and that those supporting me are doing it because they love me and are in this with me, they are happy to do so, and I can still feel sad at times that this is our reality. It continues, in many ways, to get harder the longer this goes on because I so yearn for a “normal life” full of all of the growth and adventure that it is to be a young 30 year old. I can still have growth and adventure, but it does look very different than the life I pictured having right now.

• I am also thinking about this idea of taking up space in terms of how much space this recovery and post-accident hooplah has taken up in my life… and the whole time I know that there is still a me in there somewhere, trying to survive and thrive in the context of the situation and also trying to find enough space to figure out who she is. She is in so many ways, different than who she was before the accident, and in many of those ways, it is a good thing. So many lessons have been learned, a new perspective, an outlook on life, and a general appreciation for the small things. I want there to be enough space for me to explore and learn about this new me—who she wants to be, how she wants to be—while I am still moving through this mess. I think I’ll soon create a vision board, perhaps that speaks to how I want to show up in the situational context that I’m forced to deal with every day and will be dealing with for at least another year, and also speaks to who I am underneath it all and how I want to show up currently and beyond.

• Saturday 6/17 we hosted Patrick’s mom and partner and went to see Robert Plant and Allison Krauss at Kit Carson Park. Going to a big event with hundreds of people felt good and hard all at the same time; when I go out now, I can't help but think about what people think when they see me, do I want them to know my story, is it important to tell new people when I meet them? Sometimes. I feel like I have this huge secret that at times, weighs on me, and at other times doesn't feel all that big or necessary to share. We had a great night. Then on Sunday 6/18 we came to Albuquerque for Father’s Day dinner at Patrick’s dad’s house and spent Sunday and Monday nights with his dad and brothers. All weekend we ate amazing food, spent time in great company, and filled our cups more. It feels like a lot back to back and also like the right thing for us to make happen.

• We keep feeling like we don’t have enough time to be in community like we used to, especially in Taos. When we can make it work to travel and see people important to us, or go on quick trips to visit, or even host, we are bolstering the community that we need to thrive and at the same time, creating less space to hone our Taos community.

• I keep returning to the mosaic metaphor to describe my feelings. I just had my 8-month accident-iversary and feel like it has been too long and too short, like I am filled with immense grief/pain/trauma and also gratitude/joy/pride all wrapped up together. I still have a long way to go.

Wednesday June 21st - Thursday July 6th

Medical/Recovery:

• Arm: 

  • After my 2 week follow up appointment, I started weaning from splint as instructed and was sleeping without it as of Thursday 6/22 (2 weeks and 2 days post op). I have been doing my range of motion (ROM) exercises daily and started using my arm more, washing a few dishes, picked up the yard, etc. I felt a bit uneasy about the instruction I was given and several of my Taos providers were also concerned, so I sent the following message on 6/23 to the orthopedic team: “I’m hoping for some clarity on my post op instructions. In a pre-surgery call, I was told we would need to be extra careful with my arm post-surgery for up to 3 months. In my surgery discharge instructions, I was told to wear my splint at all times except showering and that heavy pushing, pulling was not allowed. In my 2 week post-op appointment, I was asked if I had been doing my ROM exercises, that I can begin weight bearing with a focus on ROM, that I can start weaning off of the splint, and that I essentially cannot hurt my arm at this point. It would be helpful for me to have guidance about how much weight I am able to tolerate or if I can simply increase as I feel able. Reflecting on the information from my pre-surgery call, I am confused about how "careful" I need to be exactly. Please advise. Of note, I am working with PT to recovery from other injuries sustained in my car accident and had previous to surgery been lifting weights.” I heard back on Wednesday 6/28 that I was given the wrong information by the PA that I saw, and I should be erring on the side of immobilization, taking my splint off only to do my ROM exercises and to shower. I can weight bear only minimally, picking up a cup of coffee, but not much more than that. UGH. I asked that I do not see this PA again and come in for appointments when the PA who called to clarify can see me and when the surgeon is also on site. I wonder how many other people were given the wrong information by this same PA and didn’t think to call and clarify… what damage could be done!

  • It is difficult to have been given more freedom with my arm, only to learn that I should not have been weight bearing or weaning off my splint. It is as if I took a step back. I’m getting used to the splint and diligence I need to have with using my arm, and in the grand scheme of things, being extra careful and having a mostly immobilized arm is not a big deal. Pain and discomfort in the arm continues to improve and I am needing ibuprofen and tylenol less regularly now. My scar is intense but healing well.

  • Not being able to use my left arm for weight bearing is presenting some challenges as I continue to work out and be generally more active than last time I had this surgery. Because I am using my right arm more for everything, from lifting myself up to reaching across myself in an odd position to grab something, there's a muscle and myofascial strain pattern developing that is exacerbating my back, ribs, and shoulder pain. My chiropractor, massage therapist, and energy worker/movement therapist are all helping me to unwind this pattern and support my need to use my right side more for now. I will see the pain injection specialist on 7/16 for additional support.

• Mouth:

  • I established with a new Dentist on 6/29. She and the office staff were very welcoming, comfortable, on top of insurance stuff, and made me feel like I was in the right place. I need a gingivectomy to remove gum tissue that has grown over a tooth fracture on the lower left side, and then a partial crown to protect the fracture. I will not need to take my braces off for this appointment after all, so that is a huge relief. I’m scheduled to have this procedure and a dental cleaning on 8/8.

  • 7/6 I discovered a big sore on the inside of my upper lip that must be from my braces, I only notice it now that it is pretty uncomfortable. I am used to having numb lips and then every now and then something like this happens — or I burn the inside of my lip by eating something too hot — and then all of a sudden can feel uncomfortable sensation. It is odd! The outside of my face is completely numb as is the inside of my mouth, but the in between tissue or deep layers are able to feel sometimes.

• PT:

  • I am back to doing my home PT routine and have added new exercises including bike sprints and step ups with a higher step. I have had to adjust many of my exercises as I cannot use weights or really do any exercise involving my arm.

  • In my PT appointment on 7/6, I ran for the first time on the treadmill, jumped for the first time from the ground (I feel heavy!), and added curtsy lunges. Huge progress! Given the inability to lift weights, we are holding off on more PT appointments until I have weight bearing ability. I can progress the exercises that I have as I feel able.

• Insurance: All of my insurance woes from Colorado are handled! My patient advocate is always here to help me, but the bulk of what she was working on for me has been handled. I am still in awe of her and that she was willing to take this on for free; I truly do not know where I would be without her, likely taken to collections and having nearly lost my mind not knowing how to navigate this mess. I also found out on 6/26 that the helicopter payment finally went through! I am excited to have more time to fully focus on healing and getting back to truly living instead of spending so much of my time on insurance drama.

• Work/Income:

  • I have continued to keep my two work contracts going with the understanding that I am not able to work very much, and it has worked fine. I have worked for the NM Human Services Department since August 2020, renewing a new contract every July 1 when the new fiscal year begins. This July, I decided it was best to terminate my contract for now and it is very bittersweet. I know that I need to focus all of my energy on healing and at the same time have so loved the work I’ve been able to do a HSD, leading two large data visualization projects (Scorecard and Data Book), developing and launching a structural determinants of health and wellbeing effort, and various other projects here and there. I may return down the road but for now, my primary focus is on healing and all that entails.

  • I applied for short term disability at the beginning of February and have been able to track my slow moving application online until recently. Now, the SSA site is down so I can’t even see the status of my disability application, which was submitted nearly 6 months ago. I need to call and figure out what’s happening.

  • I am so grateful for the generosity from my community since in the early days of my accident - your support has sustained me financially through this so far. Thank you.

Life happenings and reflections:

• We’ve had several great volleyball park hangs in the past couple of weeks, I really love having that community and even got to see some friends I hadn’t yet seen since the accident.

• Patrick and I went to two shows in the past 2 weeks at the Taos Mesa Brewery (Dumpstaphunk and Tone Ranger), which finally reopened next to Hotel Luna Mystica. It was great to go out in town! We had really fun times in good company, dancing under the stars, and I felt like I could dance more like myself again.

• I stayed in ABQ Wednesday 6/28 to stay with my cousin for an early Thursday appointment with the dentist - when I first moved to ABQ in 2014, I lived with her and her husband, and it was very nostalgic and yummy to stay with them again.

• On 6/27 Patrick and I went to the river and decided to do a short hike to the Black Rock Hot Springs, which was my first non-flat hike and I was even able to climb over rocks and whatnot. It felt great! I was surprised by what I could do. It was about 1.5 miles in total. We also spent the day Monday 7/3 at one of our favorite camping spots, Rio de Costilla, and while we haven’t yet gotten out camping, it felt so good to be there and play in the water with the pups for several hours.

• Now that I am getting out more, I realize the toll it takes on me as my stamina is still so limited. I sleep a lot after going out, even if we aren’t out late or staying up much later than usual. Maybe I am still catching up from being so busy, I am also still very much healing, and it makes me a little bit sad that I am still so often feeling depleted. I am finally having more space and energy to do more things (concerts, go hang with friends, hikes, river, random adventures), which feels great, and there’s a delicate dance in making sure my battery stays charged as I move into this new phase of my recovery.

• I’ve had some heart filling interactions with young children of my friends these past two weeks. I used the advice from my therapist in just talking openly with kids about my scars and apparent owies and in a surprising way, it built connection and helped me feel more confident and comfortable. Children are so caring, curious, and in tune! They can tell you have been hurt and want to understand; it is clear that they feel for you and with you.

• I had a recent realization that I no longer have nose and cheek freckles, and I miss them.

Friday July 7th - Tuesday July 25th

• I’ve been struggling with more pain in a number of ways lately. As I’ve talked about in my last post, there’s been an uptick in shoulder, ribs, and back pain since my 6/6 arm and mouth surgery; it was there before but much more mild and now very present. I’ve also been experiencing more knee and ankle pain since adding jumps, running, and curtsy lunges to my home PT routine.

  • My chiropractor strongly believes that it would help my pain to always wear shoes with good arch supports, which basically means tennis shoes all the time. This is hard for me to swallow with it being summer and in the 90s in Taos lately. I also just love to be barefoot. She also believes that with my new PT exercises and increased pain, I may need to back off the exercises to find the right balance between increasing strength and not overstressing my body. Overstress can cause a constricted fascial pattern so if not careful, yes I will be getting stronger and at the same time, reinforcing and reestablishing a pattern of pain and constriction.

  • My other providers share differing opinions, which is the norm with this many providers, about arch supports, how hard to push in PT, etc. It is difficult to navigate and also empowering to know I can make the decisions.

• 7/10-11 Patrick and I went on our first camping trip in the van and even went on a 2.5 mile hike (see here)! We found a wonderful primitive camping spot in Carson National Forest near Hopewell Lake, with no one around us, tree cover and also very close open space/valleys with wildflowers, and beautiful foliage. The pups were the happiest I’ve seen them in a long time (see here), and I of course was very proud to be able to do my longest hike yet, especially while struggling with increased pain. 

• 7/12 I had an orthodontist appointment: my teeth are progressing well so we increased the top wire strength again. No new information about jaw surgery readiness or anticipated timeline, though she did say she would meet with the oral surgery team on Friday 7/14 and discuss my progress. She thought it possible that they would want her to work on creating space between my front two teeth, where one is currently pushed back behind the other. I imagine I will know more in our next appointment on 8/9.

• We had friends in town over the weekend and did our regular Friday park volleyball get together, then went to the river in Pilar on Saturday. We were planning to float and as it got closer, Patrick and I both became increasingly nervous about me being out on the river with only one good arm, plus the rocky river bottom and somewhat unstable ankles and knees. We decided to just hang out on the side and bring the paddle board to play around but not do an actual float. It was a lovely day!

• 7/16 I saw my pain injection specialist for treatment of neck, upper back, and shoulder trigger point injections and a nerve block for my recurrent headaches stemming from the base of my skull. I was very sore for about 24 hours but see a lot of improvement in my pain. I think we’ll need to do another treatment in this area, and then will move to prolotherapy and trigger point injections to help with ankle and knee stability. I’ll see him again on 7/30.

• 7/16 was my 9 month accidentiversary - I posted this new page on the website, where I plan to continue adding more reflections and learnings as I feel ready. I will also be posting on social media. I appreciate your engagement with my writing as you’re able. It feels good to get positive feedback from people who read my posts, and I daydream often about sharing my story and learnings more broadly at some point.

• I took a break from PT over the weekend and got back to it on Monday 7/17, with less reps of the new exercises, and felt fine doing so. I had a bodywork appointment and got home around 3, relaxed on the couch, and when I got up to make dinner I couldn’t put weight on my right leg due to knee instability and pain. Patrick was out at a work meeting and I was afraid I couldn’t even make it from the couch to the kitchen to make myself dinner, let alone outside to put the birds away before it got dark. I sat back down and did some deep breathing, manipulated my femur a bit to roll outwards as I know it wants to roll in towards my knee scarring, and was able to finally put weight on it and move around, though was still in pain. Not only was I upset at being in pain, but I felt like my body didn’t communicate with me to let me know I shouldn’t push it with PT, that it came out of nowhere, and I want to be independent! This was scary and frustrating.

• I took a very relaxed day on Tuesday and knew I had a chiropractor appointment Wednesday 7/19 and was looking forward to her take on my new pain. In my appointment with her, we realized something different happened that caused my leg pain, so it doesn’t seem related to my PT exercises. My hip had come out of place, causing instability and pain in my knee and ankle. My legs both showed signs of fascial restriction release with the additional rest/reset time, so perhaps I will be able to gradually increase into my new PT exercises without causing problems, just need to take it slow. Phew!

• I also had a lovely massage Wednesday 7/19 and we talked a lot about my upcoming trip, going to Red Rocks, airport navigation, and other excitements and fears; it was really a safe space for me to talk through fears and strategize about things I hadn’t fully thought through. It was hard and helpful. I decided to bring my cane with me to help with airport navigation and also as a back up for Red Rocks and decided to voice my fears—like what if we’re at Red Rocks and I need to go to the bathroom but my legs don’t work!—to my closest people coming with me (my brother and best friend) so that they are there with me through it. It’s a balance in wanting them to know, not wanting to take them out of their present moment or enjoyment due to worry about me, and also being vulnerable and strong which will ultimately bring us closer. I got this! We also discussed that perhaps the gravity of the week ahead (travel alone, going to Red Rocks, anniversary of my dad’s passing) was causing more stress than I realized and could be the reason for my hip coming out of place. A helpful realization for me to be mindful of in the future.

• On 7/20, I had an eye surgeon follow-up that went very well. He’s happy with how my right lower eyelid scar tissue continues to heal and said that my eye is not at immediate risk of damage from dryness, I’m doing a great job with my scar treatments and massage, so we have options for when to do the reconstruction surgery. I decided to go ahead and schedule because I’m eager to keep things moving - we are scheduled for surgery on 10/27, which will include a spacer graft at the middle lamella, about a week of recovery time with limited activity, and then mostly back to normal. If surgery times open sooner, they will call me to move me up.

• Later that same day, I flew from Albuquerque to Denver for a week long solo trip. It was my first airport experience since the accident, I brought my cane, and Abq is a very easy airport so getting through was quick and painless. I ended up with a 3 hour flight delay and didn’t get in until almost 8, but it was pretty easy traveling!

• The Denver trip has been amazing - I got two massages from the massage therapist I found while living here and he is a true healer; we had two wonderful family get togethers with all of my siblings, nieces, nephews, aunt and uncle, and another with my cousin and her new family; spent a day at the lake with my brother and his partner; and spent a lot of time hanging out at my mom’s house. I also went to see STS9, a jam band I’ve been seeing since high school, at Red Rocks with a group of friends who are like family. It was so yummy! What a huge milestone to be able to walk in to Red Rocks, dance the night away, and have no pain or problems. I was so happy and emotional to be there; Red Rocks is a very special place and I’m so grateful I could go. (many photos in the folder here, sort by name/date)

• On my way home tomorrow, I will see my face surgeon in Co Springs and Patrick will meet us to drive me home.

• It is bittersweet to go home to Taos after spending such a wonderful and heart-filling time in Denver; I always want more. I am missing my family and friends ahead even before leaving them and at the same time it will feel good to be back home with Patrick and the animals and get back into my routine.

Wednesday July 26th - Thursday August 10th

Medical Updates

• Face: 7/26 Face surgeon appt in Co Springs: it was so nice to see him! He is super happy with how my face scars are healing and after all skeletal surgeries are complete and healed, we will discuss additional cosmetic surgeries to continue getting my face close to what it looked like before.

• Arm: 

  • 8/4 ABQ arm surgeon follow up was wonderful. The surgery worked and the fracture line is no longer visible. Goodbye grubby and stinky splint! Hello normal activity with a 15lb weight limit for about 6 weeks, increasing as I feel able with pain as my guide. She said I can even try playing volleyball in 6 weeks… let’s goooo!

  • PT: Since getting cleared to use my left arm again, I am back to lifting weights (deadlifts and squats with weights) and doing my full pilates reformer workout with several different arm strengthening exercises. It feels so good to be back at it and have my arm back.

  • Other progress: I’m able to do so many things more easily now that I can use my arm again! Cooking, gardening, cleaning, even picking up dog poo in the yard which is silly to be happy about, but it all feels wonderful.

• Mouth:

  • 8/8 ABQ dentist: this appointment was for a general cleaning and exam, plus a gingivectomy (laser removal of gum tissue) and inlay on a fractured tooth… a 3 hour appointment! It took 4 tries to properly numb the area for the gingivectomy and inlay, due to how my facial fractures occurred at the area of nerve innervation. The numbing part was very uncomfortable and the procedure itself went well. They removed gum tissue to expose the entire fracture, which unfortunately goes down into the root area of the tooth. If exposed at the root level, I would need a full root canal so they only decided to only expose and cover the area above the root. It is likely I will lose this tooth eventually but the inlay will work to cover and protect it while I wait for surgery.

  • 8/9 Orthodontist: 3/4 of my mouth is now at the wire strength we need for my jaw surgery, and the other 1/4 will be there after my next appointment on 9/6. She planned to let the oral surgery team know when they met today (8/10) and she thinks it is likely we will schedule a surgery date in October. This is very exciting news and I'm also not getting my hopes too high as the oral surgery team may have other plans we don't know about. Hoping for more info soon!

• General: I continue my regular appts in Taos: chiropractor, body/energy work, movement therapy, massage, pain injection specialist, behavioral health. These all still feel very necessary and important, and also, take up a lot of time and coordination to make it all happen.

Other updates and happenings:

• My dad’s 85th bday would have been on 7/30. I enjoyed the day home by myself and planted some new flowers for him. He has very been present these past weeks, I posted some thoughts about grief on my learnings page.

• On 7/31, Patrick and I decided to go camping at one of our favorite places (Rio Costilla) and it turned into a surprise engagement! I posted this announcement with photos on social media.

• We’ve had a lot of fun social events since I got home from Denver: volleyball and celebratory night with friends at the local volleyball bar and venue, volleyball at the park, and a friend’s 40th birthday at the river. At the birthday party we even inflated inner tubes and did a short float, my first since the accident which was so enjoyable!

• During our time in Albuquerque for my mouth appointments 8/8-9, we stayed with Patrick’s mom and husband and they took us out for a yummy Indian food dinner. I also was treated to a free facial by a friend who owns a skin care place, this was my first facial and she made me feel so comfortable, sparkly, and nourished! What a lovely experience.

• Work/income: I am still not in a place where I have the capacity to work very much, and haven’t had a paycheck since June. I am still waiting to hear about my short term disability application and need to start bothering them more to get an answer, though I am resistant to spending hours on the phone now that I’m finally not doing this for insurance anymore.

• I've decided to have a big 1 year "surviving and thriving" celebration in Taos on October 14th, the Saturday of my 1 year accident-iversary. More details coming soon but it will be at a local volleyball bar and venue space that our friend recently opened. All who can make it and want to celebrate with us are welcome. So much love!

• As I get ready to post this, I realize that my posts have recently become shorter and less filled with reflection. I have been journaling and writing a lot, and will continue to post more learnings and reflections on my new learnings page as I feel ready to share. Thank you for engaging with me and my thoughts. I often think about how lucky and supported I have been through this recovery, and continue to be filled with immense gratitude for all that have been involved. You all mean so much to me, thank you for being here, with me, through all of this.

Friday August 11th - Thursday August 24th

General updates and happenings:

• Patrick and I had plans to go to Durango for a long weekend with friends and he sadly woke up sick and tested positive for COVID the morning we were supposed to leave. I had no symptoms and decided to go without him, just me and the dogs. This was my first time driving out of state by myself since the accident and all went smoothly! It was a really lovely getaway with close friends and the pups, our airBNB was right by the river and we could easily walk down to spend time riverside. We ate good food, saw a lot of friends, hung out by the river, and enjoyed time away. I was conscious of how hard eating is for me and especially, eating and socializing at the same time. Going out to eat was still very fun but the food part was not very enjoyable for me.

• On the last day of the trip, I woke up feeling sick with a sore throat and cough, and was luckily able to drive home with getting too tired. I pretty much napped the rest of the day after getting home early afternoon. COVID tests are hard to come by in Taos but Patrick was able to find some on Thursday, and as we guessed I would, I tested positive for COVID. I was feeling grateful that, if I had to get sick and quarantine, I got to be with my animals, fiance (still feels fresh and silly to call him that!), and beautiful garden and outdoor space. I also was recently loaned a DJ setup from a good friend, and am enjoying playing around with music and learning how to DJ on and off when not resting.

• 1 Year Celebration: We’re working on more details for our big 1 year "surviving and thriving" celebration in Taos on October 14th, the Saturday of my 1 year accident-iversary. The event will be held at KTAOS, which is a local volleyball bar and venue space that our friend recently re-opened. The event will go from 4-midnight, with sand volleyball, live music (more details coming soon), and food and drinks for purchase. We’re excited to partner with our friend to support their new business and celebrate life with all of our family and friends. All who can make it and want to celebrate with us are welcome!

• Income: I had still not heard from or been able to check the status of my social security disability benefit application online and finally had it in me to call them. Over two different days, I spent about 2 hours on hold and finally spoke to someone. My application is still in process and there is nothing more needed from me. The person I spoke to said that it can take up to 5 months, I told her it had been 6.5, and she said “well, it can take longer, there’s no estimated date of completion, just keep your eye out for mail from us.” So, the waiting game continues. I continue to know it is the right decision for me to continue taking a break from work at this time. I simply do not have the capacity for more than what I'm currently dealing with.

Medical Updates:

• General: With going away for 4 days and then getting COVID and needing to rest, it felt weird (but also right) to not be doing my home PT routine as I typically do. I have done only four PT lite sessions, skipping the cardio, in the past three weeks. COVID sure brought on more muscle tightness and joint aches and pains than I was having before, good thing I have a solid team of providers to help get me back on track. I’m seeing my pain injection specialist tonight and hope to get back in the groove with full home PT tomorrow!

• PT: We took a short break from PT appointments while I wasn't able to lift weights or use my left arm. I had enough exercises to continue building on my own that it didn't feel necessary to keep going in for appointments. Now that I am ready to dive back in, due to how referrals and tracking work, I need to get new referrals. Upon reaching out to my leg surgeon for another referral, I was again reminded of how wacky the system is. A referral can only be written for one body part and a patient can only work on one referral at a time, due to insurance limitations. It can't be uncommon to need to rehab multiple injuries at one time, can it? Also, while tracking what's happening to tell the right story in a lawsuit, how can you do this if you are technically going to PT for only one femur yet need to rehab your entire body...? It is so confusing and yet another example of how the system is not set up in the patient's best interest.

• Arm: It continues to feel amazing to have my arm back and I am having minimal pain with increased activity, so very exciting progress on that front. I am eager to play around with the volleyball and see how it feels to bump and hit 😊

• Mouth:

  • I was pretty sore for the first week or so after getting my braces adjusted and having the gingivectomy/inlay procedure, but that has finally calmed down again. I have on and off pain and most other times, my mouth and lips are very numb.

  • I finally heard from the UNM oral surgery scheduler that my jaw surgery is scheduled for November 13th! This is the big surgery, called a segmental lefort, where the surgeons will remove plates that have been so carefully holding the pieces of my face back together, assess bone density and do bone grafts as needed, rebreak my upper jaw into 4 pieces, and put it back to together in proper alignment. This is the last plan I have heard, so of course, the plan could be slightly different than what I understand now - all part of the dance I am very well used to by now. It is scary and exciting to have a date set for the big surgery. This morning I was wandering around knowing I needed to eat breakfast, but with nothing sounding easy or yummy to me, and then heard about my surgery. Having an end in sight and the hope of eating normal food again is inspiring.

Friday August 25th - Thursday September 21st

General updates and happenings:

• In general, I’m getting out and about a lot more (finally!), traveling to see friends and family, going to concerts and other events. It feels both wonderful and challenging to be out in the world doing “normal” things as it can bring up how not normal I feel. All in all it is good to be back out there doing more and especially as we approach 1 year post-accident. 

• Grief: I’ve been having more strong waves of grief lately, perhaps because I am getting farther away from survival mode and slowly integrating more. The waves typically come on when I’m home or driving, so I can mostly just be with all of the feelings and thoughts and watch/feel them move through me. I’m working through this by myself, with my therapist and other providers, and with those close to me. I’m once again so grateful for all the support I have in this life.

• 8/30 - 9/2 Chicago Trip: I traveled to visit some very close friends and had a wonderful time in the city, spending two nights at one house and two at another. We enjoyed eating out, walking around, light shopping, I was honored to watch one friend in a shuffle dance competition and then to meet the other’s baby (!), we went on Lake Michigan two days in a row, and saw the Magic City Hippies. Getting to spend this time with two of my dearest friends was really heart filling. I came home exhausted and with a very full cup.

• Homefront: Coming home to a beautiful garden that had really exploded while I was away, a happy kitty and puppies, and happy birds, felt great. The day after I got home I picked up 27 eggs from the bird run! I love that they are self sustaining; I sell the excess duck eggs and what we make back pays for the bird food.

• Home PT and Progress: I continue to experience occasional frustration with the plateau or slower progress while doing my same PT exercises I have been doing for some time, and also know that I continue to make amazing progress. What a funny double mind / experience to have.

  • Volleyball: In the last month I’ve played volleyball three times! It feels AMAZING to be back out there and I’ve had minimal pain while playing, with soreness and aching after but all is manageable. I am so happy.

  • Hiking: Patrick and I went on a 2 mile hike with more elevation gain than I have done thus far! Onwards and upwards 😊

• Leadership Retreat: A dear friend who I met through work in 2014 and have done some consulting with held a retreat at Hotel Luna Mystica last week for a group of women leaders working in public health consulting. I was honored, and nervous, to be invited to join. Ultimately, I felt seen, supported, built up, connected, and inspired. It was hard and good for me to push myself in that way. I didn’t feel fully like I belonged or would have anything to contribute because of the way my life has been over the past year, but I did belong and I did contribute and I did grow. Another heart filling experience!

• 9/15-18 Denver trip: Patrick and I traveled to Denver to see my mom and go to a concert with friends at the Mishawaka in Fort Collins. It was so nice to be back at my mom’s house and spent time with her, I miss her! Then having a night with friends who are like family filled my cup as well. This was a lovely way to feel alive and celebrate (without announcement) that it was my 11 month accidentiversay.  I left both wanting more time in Denver and also ready to be home.

Medical updates:

• Mouth:

  • 9/6 Orthodontist appointment: she increased the wire strength on the top one last time and gave the go ahead for surgery in November (from her perspective). We’ll have an appointment on 10/4 to do surgery records including x-rays, imprints, and 3d scans and another on 10/24 to add surgical hooks to my braces wires, pending guidance from the oral surgery team. Post surgery she expects that I’ll be wired shut for a period of time and also have to wear a splint, that we’ll have a 2 week check in to make sure the braces are still in proper position, and then resume appointments every 4 weeks for 6-12 months depending on how the surgery and healing go.

  • Oral surgery team: I still haven’t heard anything from the oral surgery team about what prep is needed for surgery. Based on previous conversations, I assume I’ll need to schedule a CT scan, the team will then review this with other records for a surgical planning meeting, then I will have at least one appointment to go over the plan. My schedule is pretty hectic and on top of that, the last time I had to get a CT scan it was a shit show with insurance, so early planning is important to me. I reached out to my surgeon right after I got the surgery date, didn’t hear anything back, and then my orthodontist reached out after our appointment 9/6. I’m trying to continue holding hope for surgery to happen and am also beginning to wonder if it is realistic given the lack of communication. I also want my oral surgeon and original face surgeon to be in communication about some of the risks associated with removing plates from my original reconstruction, and this hasn’t happened yet. This surgery is on my mind a lot and it would make me feel much more safe and comfortable going into surgery if I knew the new oral surgeon and original facial reconstruction surgeon were on the same page. I plan to continue advocating for myself and what I need and am optimistic that I can get my needs met by this team.

• Regular weekly appointments continue in Taos with an average of 4/week. 

  • I’ve started seeing my massage therapist in her home when my ABQ travel gets in the way of her clinic schedule. I’m glad I can see her this way as she really helps me, but do have to pay more out of pocket for these appointments.

  • I’ve been on a break from PT appointments since my arm surgery and finally got a new referral to start back up again, but my preferred therapist is out and I don’t want to start with someone new. Given my busy schedule and upcoming surgeries, I’m mulling over whether to wait until I’m healed from jaw surgery or try to get in now. I have my routine and am able to modify/advance exercises as I feel able, so it does not feel like top priority, though I know it is helpful and important.

• October-November schedule is going to be very busy! I still don’t have any pre or post op appointments scheduled for my jaw surgery, which will only add to the travel:

  • 9/30-10/3 Denver

  • 10/4 ABQ Orthodontist

  • 10/14 1 Year Celebration in Taos

  • 10/18 ABQ Eye surgery pre-op appointment

  • 10/24 ABQ Orthodontist

  • 10/27 ABQ Eye surgery

  • 11/1 ABQ Eye surgery post-op appointment

  • 11/10 ABQ Arm follow-up

  • 11/13-14 ABQ Jaw surgery and hospital stay

  • 11/29 ABQ post surgery orthodontist appointment

Friday September 22nd - Friday October 6th

General updates and happenings:

• Income: I continue to not have the capacity for work and my savings is starting to get low. I, once again, will just say how grateful I am for all of the support that has helped to carry me this far. I called social security again, this time trying the local office instead of the number online. I was told that my application is in the medical review phase which can take up to 1 year. SIGH. They suggested I call HHS to check about local benefits and general support, though I know I won’t qualify because our household income is higher than what qualifies.I’m not willing to misinform them and it also is quite a privilege check as I know many other people need benefits and services more than I do, though I am very much struggling and could use support.

• Routine: I am really enjoying my slow mornings, waking up whenever my body is ready after typically sleeping at least 8 hours, and sitting in our sunny living room with my heating pad, coffee, and book. I also have my wonderful fur family to keep me company and snuggle - someone is most always sitting on my lap while I read and enjoy my coffee. I then go outside to let the birds out, sit and meditate in the garden, tend to the plants and sometimes simply wander around enjoying being outside. I continue to have at least 3 and up to 6 appointments each week and somehow am able to keep this routine up most days. It is keeping me sane 😊

• Feeling accomplished: I am working on letting go of my need to accomplish 3 PT sessions/week now that I am playing volleyball twice a week, walking and hiking more, gardening and doing other yard work, etc. It’s helpful to remember that any and all movement is positive and I don’t need to quantify/qualify my exercise. I am enough, whatever that looks like each week.

• New exercise: I did my first yoga class since the accident this morning and wow did I surprise myself - I felt strong, present in my body, and free in my movement. Such an amazing feeling!

• 9/30-10/3 Denver Trip: Patrick and I went to Denver again for another Red Rocks show on Oct 1. We saw FKJ, one of our favorites, who was performing there for the first time. He has always put on a stunning show and this one did not disappoint! One of the best shows I have ever been to and with a wonderful group of friends. We also spent time with my mom which is always heart filling.

• On the horizon: I am so excited to have the 1 year celebration in just one week! We have had ~150 RSVPs and cannot wait to celebrate with everyone - and those that aren’t there will be in spirit. As comes with the territory of party planning, I am also nervous and anxious, though I know it will turn out amazing and be wonderful simply to be together. I also have my two upcoming surgeries, the big jaw reconstruction I am still waiting on more information about, which of course adds to the anxiety. This has been affecting my ability to fall sleep some, though I continue to sleep at least 8 hours a night, so all in all I continue to manage well. When I remember, I set the intention to be present with whatever is right now and not keep worrying and thinking about what’s coming next… is it quite a balancing act and all I can say is I’m happy when I remind myself of this.

Medical updates:

• Mouth

  • Oral Surgeon: I have been trying to track down more information about my upcoming surgery, with slow progress. I am trying to balance advocating for myself and what I need while also respecting my surgeon’s boundaries and not pushing to the point of hindering our relationship. I finally received a very minimal email from the oral surgeon outlining the steps he thinks will be needed including surgery records 2-3 weeks prior, pre-op appointment 1 week prior, and surgery on November 15th (I originally had November 13th on my calendar so this was a bit confusing). I responded asking for clarification about the date, relayed some of my questions/concerns and the hope of receiving a surgery plan in writing. I want to get my face surgeon’s input on the plan so he can ask questions if he has any - it would make my nervous system feel much better going into the surgery knowing that he is on the same page. I got a call 10/5 to schedule a pre-surgery appointment and was able to coordinate with my next orthodontist visit on 10/24. Slow but steady progress.

  • 10/4 Orthodontist appointment: She still hadn’t heard from oral surgeon either but the second surgeon was in surgery with him that day and promised to bug him about it. She confirmed November 15th as the date of surgery and thinks I will likely wake up from surgery with a splint (like a hockey mouth guard) in my mouth, and my mouth wired shut, which will last for about 6 weeks. If any teeth need to be removed, they will either take them out during surgery if they are infected and put a placeholder in or leave them in as a placeholder to deal with later. I see her again to add wire hooks in prep for surgery on 10/24.

• Eye surgery: remains scheduled for 10/27.

• PT: I have still not seen my PT again since before my arm and mouth surgery on 6/6. Typically they call when they receive the referral and I haven’t heard from them; I also know my PT was out sick for awhile so she may not be back. Still feeling torn between working myself in before the next two surgeries, knowing I will have to take a break for several weeks/months while recovering, and waiting to go back after I am recovered.

Saturday October 7th - Friday October 20th

General updates and happenings:

1 Year Surviving and Thriving Celebration Weekend (Oct 12-16)

• The week leading up to the big 1 year celebration was full of preparations and excitement combined with nerves. Patrick and I did more cleaning, organizing, and purging in the house and yard than we have done since we moved in; it felt awesome and the house looks great!

• Family started arriving on October 12th, with my mom, brother, and fiance staying at our house, and some of Patrick’s family and close friends at Hotel Luna Mystica.

• Friday, Oct 13th, more friends and family started arriving and we hosted an open house with about 35 people. It was so much fun and wonderful to get some time with a smaller group before the big party. A group of old friends, a mix from middle school-college years, came and stayed next door; another group from Patrick’s neighborhood growing up was here; some of my mom’s good friends from Denver; all this in addition to our families. It was a big mix of our really important people coming together… kind of like practice for a wedding?! How fun that they will already have a connection because of this celebration. The connections among various groups of people only continued to grow over the weekend - so so yummy.

• Saturday morning, October 14th, was the solar eclipse. It felt serendipitous for the eclipse — symbolizing new beginnings, transitions, and growth — to fall on this very special weekend. We went to Hotel Luna Mystica for eclipse viewing and breakfast burritos with most of the group who was at our open house the night before. A close friend made this video of the weekend, showing how beautiful it was to be at the hotel, and a little glimpse into the party that evening.

• Between the eclipse and the evening celebration, Patrick and I snuck away for a little napcito before getting ready for the party. We had more friends arrive shortly before we needed to leave for party set up, it was nice to show them our house for the first time. We had so many guests that hadn’t seen our home before and it was lovely to share our space with people important to us. We even played musical beds a bit so that different guests could experience staying in our house and camper van.

• The party started at 4pm on Saturday, we arrived at 3:30 for set up, and I was able to get in one volleyball game before too many people arrived. How fun for people to walk into the party and get to see me playing volleyball - I was proud and happy to start the evening off that way. Once I stopped playing, the night practically flew by with so many people to greet and chat with as much as I could - I felt pulled in a million different directions and just let myself go with the flow without expectations. The event flowed flawlessly in my opinion, no stress, people enjoyed themselves, the venue was perfect, and the band was just wonderful. What a night! I am still buzzing from all the love and celebration and hope I can hold onto this feeling, and even when I can’t, I know I can come back to it for a pick me up.

  • I have to give a huge thank you to our friend Ricky at Daleee KTAOS (if you came to the celebration, please help support their business and leave a review!) for hosting the event and his generosity to make it all happen. Also to Shane at Taos Canyon Cannabis for sponsoring the event and to Amanda for putting together decorations.

  • I was not expecting gifts during this celebration, and was surprised by the sweet and thoughtful gifts I received from many. I’m so grateful for the support and generosity that came in various ways. So much love.

• Sunday we had a lot of people in and out of our home on their way out of town and a few friends and family still staying with us that day. After all the morning activity, we lounged the rest of the day and caught up on rest.

• Monday, Oct 16th, was the actual 1 year accident-iversary and we woke up to say goodbye to my family, then went to breakfast with a couple of dear friends who were still in town. A lovely way to start the day! Patrick and I were thinking of going to Ojo Caliente and decided to stay home instead and just settle in our space, with all of our feelings from the weekend, and enjoy being home together. I was pleasantly surprised that the day didn’t come with heavy thoughts and feelings, it felt just like another day, perhaps partially due to all the excitement and visitors, and calm after the storm. I’m happy the days leading up were full of joy and celebration; it took the heaviness away.

• I’ll share photos from the weekend when I have gathered them from everyone 😊

Medical updates:

• Tuesday Oct 17th oral surgeon appointment: I got a call that morning that my oral surgeon was sick and needed to cancel the appointment. I was bummed at the same time that it was nice to have a day to just be and continue to settle with all the feelings from the wonderful weekend. I have so wanted to meet with the oral surgeon and understand his plan for my upcoming surgery, ask questions, and get on the same page. The office called back and asked that I come in for imaging with a tech, so we scheduled for Wednesday Oct 18th when I was going to see my eye surgeon.

• Wednesday Oct 18th to ABQ for two appointments.

  • The first was to get imaging done for oral surgery prep. While there, I tried to get my cancelled appointment from the 17th rescheduled, but they need to talk to him in order to schedule so they couldn’t help me with that. I also tried to get my post surgery appointment scheduled and was informed that they typically see you at 7 or more days post surgery… 1 week out is the day before Thanksgiving, so they also need to talk to him about that. The waiting continues!

  • The second was my pre op appointment for eye surgery, scheduled for October 27th. The purpose was to go over the plan again, answer any questions, and sign consent forms for the surgery. The surgical plan is pretty straightforward: he will put a spacer graft in the middle eyelid layer (”lamella”) and a skin graft on the outer layer. To help keep the eyelid pulled up while healing, there will be a stitch in the lower lid that is taped to my forehead. This will need to stay in for 3 days and then I can remove it myself. I can expect to have swelling and bruising and will use ice to help alleviate these symptoms, as well as tylenol/codeine to help with pain. I can also expect for it to feel like there is an eyelash in my eye while the incision heals, and will have an ointment to use to help comfort the eye. I will have 1 week of minimal activity post surgery, I’ll be fine to drive as soon as I feel comfortable, and will follow-up with him on Nov 1. We won’t know the exact time of surgery until a few days before.

• What’s next:

  • TBD Initial jaw surgery pre-op appointment with oral surgeon

  • 10/24 Orthodontist to add braces wire hooks for surgery

  • 10/27 Eyelid surgery

  • 11/1 Eyelid surgery follow-up

  • 11/14 Jaw surgery pre-op appointment with oral surgeon

  • 11/15-16 Jaw reconstruction surgery with 1 night hospital stay

  • TBD Jaw surgery follow-up with oral surgeon

  • 11/29 Jaw surgery follow-up with orthodontist

  • 12/1 Arm surgery follow-up

Saturday October 21st - Saturday October 28th

Medical updates:

• 10/27 Eye Surgery: I’m home, feeling well rested and taken care of, and healing well so far 🙂

  • We had a check in time of 8:30am so decided to get up early and drive down and back in one day. It felt good to sleep in our own bed and was an easy and beautiful morning drive with a full moon. We got to town early enough to take the dogs for a walk at Hyder Park, in our old neighborhood, before checking in at the surgery center.

  • It was smooth going in and out of the general anesthesia, I remember waking up and the nurse saying something like, “woah, were you even out? you are so awake and normal!”

  • The surgeon told us to expect lots of swelling and bruising, discomfort like there is something inside the eye, and to use ice, tylenol/codeine, and an eye ointment to help. We are pleasantly surprised with the amount of swelling and bruising; it is much less than we expected. I am in some discomfort but it is all manageable; I’m even able to read! I’m making sure to keep up with meds every 6 hours and icing every hour or so.

  • Recovery for the next week: I have a stitch holding my lower eyelid up that is taped to my forehead which I can take out on Monday. I’ll continue using tylenol/codeine through Monday as needed. I’m to rest for 1 week with no strenuous activity but can begin driving again as soon as I’m off meds. Pretty easy!

• Mouth/oral surgery prep:

  • 10/24 Orthodontist: oral surgery prep appointment to add surgical hooks to my braces wires for the surgeons to grab during surgery. I no longer have bands around the brackets and a full metal mouth which is pretty irritating! My orthodontist made a joke about me auditioning for the new James Bond Jaws movie hehe

  • 10/24 Oral surgeon: finally got in to see the oral surgeon for our pre-op appointment and were disappointed at the lack of information he had to share. They have my new scans and have requested the 3d planning meeting but it hasn’t happened yet. It was good to see him, make the connection, and ask some questions, though there is still much we don’t know for sure. What we did learn:

    • Surgery is November 13th like we originally thought

    • Pre-surgery appointment November 7th where we will go through the surgical plan

    • Recovery: I’ll wake up with a splint on top and bottom that’s kind of like a hockey mouthguard, the purpose is to stabilize my upper and lower jaws in and of themselves. I’ll have this for ~3 weeks. Then we’ll take the splint off and “wire” my jaw shut with strong rubber bands for a number of weeks.

    • He isn’t sure he can get the plates out that my original reconstructive surgeon was worried about. He will try and if it is too risky, he can work around them and they’ll stay in.

    • I may not have to stay overnight in the hospital as we were originally told, that will be a game time decision depending on how surgery goes. If for some reason we want me to stay, we can make that happen.

Sunday October 29th - Sunday November 5th

Medical updates:

Eye: Generally positive report from eye surgeon. Feeling on the up and up!

• Recovery: Friday-Tuesday were pretty good days, I was exhausted, a bit swollen and bruised, and in need of rest but not in a lot of pain. I continued icing on and off, using the prescription eye gel, and taking medication to help with discomfort. I wore an eye patch on and off to protect my eye, and specifically the stitch holding my lower lid to my forehead. With Halloween approaching, I joked wiht my family that last year I was the bride of Chucky and this year I got to be a pirate, hehe. I removed the stitch on Monday (video available upon request). What a weird feeling! After that, I no longer felt the need to wear the eye patch. Bruising slightly increased into the week after removing the stitch.

• Surgeon follow-up: Wednesday I drove to Albuquerque for my surgeon follow up appointment. He gave a positive report, is happy with how it is healing and that it closes all the way. The continued droop in the inside corner of the eye may be due to swelling or it could already be the scar tissue continuing to heal short and effectively pull the eyelid downward. My homework is to continue the scar massage I’ve been doing daily, essentially pulling the eyelid up and into the center. I’m hopeful it will look less and less droopy over time, and am happy sometimes when I look in the mirror and also continue to be drawn toward the droop and am saddened by it. He cleared me to begin slowly bending and lifting, gradually increasing activity as I feel able to. I’ll see him again in 2 months.

• Continued recovery: Starting Wednesday evening, I had several days where my bones ached on the right side of my face, even into my teeth. Yuck! Staying out of the sun and putting ice on my eyes seemed to be the only thing that helped. Thankfully this ended on Saturday, with less of a headache. I continued to rest, trying not to overdo it the minute I started to feel better. Today, Sunday, I am still feeling better and even got back into a more standard workout.

Mouth

• Surgery rescheduled: Tuesday I got a call from the surgery scheduler that my surgery date was moved again due to a scheduling conflict. My new date is November 27… at least it is still this month! I imagine this happened at least in part because my surgeon only does pediatric oral surgeries and took me as a special case, so he does not have standing operating room time in the adult surgery center. This change also means the appt where we’d find out more about what to expect during and after surgery have to be moved. Blah! So frustrating. I spent a lot of time on the phone moving around appointments, with more still to do. I also went through a whole host of emotions that day, during which I had moments where I was able to find the positives in the situation. It is good to have a longer break between going under general anesthesia, I will be able to eat food on Thanksgiving (even though I don’t enjoy celebrating about the holiday itself), I can ski on opening day. My therapist had a sweet take on it that maybe it is good because I get to take a break from being brave. The idea is nice but my nervous system doesn’t necessarily feel like it is taking a break (yet?).

Arm

• My arm surgery 2nd follow up appointment keeps getting moved. It was originally scheduled for 11/10, then 12/1, and now 12/22. To me this sure highlights the short staffing, over-taxed, nature of UNM!

What’s next:

• 11/21: oral surgery pre-op

• 11/27: oral surgery

• 12/6: oral surgery post-op

• TBD: 2-week post surgery orthodontist appt

General updates and happenings:

• Pre-surgery fun: As I mentioned earlier, I’m working on finding the light in having the next surgery moved. Some of the fun things on the docket in the newly extended pre-surgery phase:

  • cooking yummy things! butter chicken on the menu tonight, shakshuka with fresh duck eggs, baking sweet treats

  • getting ready to ski opening day at Taos on Thanksgiving!

  • playing volleyball indoors in Angel Fire

  • yoga

  • more walks and hikes and yard work while the weather is holding

  • art projects

  • incorporating pre-ski season training into my workouts

  • Ojo Caliente

• Income: I have yet to hear any updates from the state regarding my social security disability benefit application. At this point, I’m not optimistic about hearing this year and hope I will begin getting payments (and backpay!) in the new year… February will be 1 year since my application was submitted.

• Learnings: I continue reflecting and writing about my experience and have posted a new update on the “learnings” page! Expect more in the coming weeks 💜

Monday November 6th - Friday November 24th

Medical updates:

• Mouth:

  •  11/21 pre-surgery appointment: The appointment was good, he seemed very confident and calm about the procedure and their planning meeting, and we have a big packet of info to review and bring any additional questions day of. The surgery will be 4-5 hours total and I will stay overnight.

  • Surgical plan: remove plates in the area of upper jaw, assess bone density and fibrous union (scar tissue instead of bone-bone healing), remove fibrous union, bone grafts, break upper jaw into 3 pieces, realign, insert splint. This is a high level of what is expected but there’s a lot they don’t know until they’re doing it, which also means we can’t fully know what to expect post-surgery until we are there.

  • What we can expect post-surgery: No chewing at all for 6 weeks. I’ll be very swollen and need to ice a lot, with a "jaw bra". No exercise for 2 weeks and then as tolerated. The rest we'll just know when we know!

• Eye:

  • High level update: I’ve been experiencing some concerning vision changes since my eye surgery, with extreme sensitivity to light and reflections. I became especially concerned after driving at night for a pain injection specialist appointment on 11/7; I haven’t driven at night since. My symptoms continue today and I often have to close all the blinds in the house and turn off lights that are affecting my vision. There isn’t anything to do about this right now and hopefully with more healing time things will improve. My eyelid is also healing a bit turned outwards (inner eyelid is very visible), which hopefully will heal with time as well but may need another procedure.

  • Play by play: Read below for a summary of my information gathering.

    • Tuesday 11/7 I had an evening appointment with the pain injection specialist. It was my first time driving at night since the surgery and I noticed a scary and concerning change in my vision. My light sensitivity is extreme, with halos and trails coming off of cars from a far distance, as well as reflections from my own car lights on road signs. It is difficult to focus on the road. I had already noticed some increased light sensitivity inside the house, either with sun coming in from the windows or from indoor lights, and thought it might be part of the healing process. This nighttime experience made me feel differently, but I was still thinking of waiting to see if it would pass because I haven’t had an easy time communicating with my UNM providers.

    • I saw my chiropractor on Wednesday 11/8, and she was concerned and encouraged me to follow up with my surgeon. I felt both reassured and worried at the same time, reassured in being heard and believed by one provider, and worried because of my previous TBI healing experience trying to get answers about vision changes and essentially being gaslit about what I was experiencing. Here we go again, I thought.

    • On 11/8, I both left a message in my UNM portal and called the eye clinic. The person I spoke to took down the information related to my concern and said they would get back to me soon. By Friday 11/10, I hadn’t heard and with the weekend coming, I followed up again by phone. The first person I spoke to said it could simply be related to dry eyes and to continue using eye drops to keep my eyes moist; she wasn’t my surgeon’s tech and said they would be calling me back later with more info. Then I spoke with my surgeon’s tech and she again suggested it was dry eyes. This didn’t make sense to me, so I asked her to elaborate. She relayed my health history, that I have sjogren’s, that the accident caused scarring of my lower eyelid that wouldn’t allow my eye to close all the way until they fixed it in this surgery. I said thank you, I still am confused because 1) I have managed my sjogren’s for over 10 years, 2) before surgery, my surgeon said I wasn’t at risk of damage to my eyes due to excess dryness caused by the eyelid retraction, and 3) if the eyelid issue was just fixed, why would a vision change due to dryness show up now? She didn’t know. She suggested more dry eye care, which I am well aware of and doing already. She also said this sounds a bit like trauma-induced cataracts and had I been told that the accident caused this? I said no. She said I should hear from the surgeon early next week…

    • After still not hearing back from UNM, several of my Taos providers expressed continued concern about how my eyelid is healing and the vision changes. They were able to get me in with a Taos eye doctor on 11/15. She said that my vision is fine, but is concerned about how the eyelid looks (“severe ectropion eyelid”) and with the vision changes. She is sending me to another surgeon for second opinion on 12/12 in Albuquerque. Blah! Glad to have the support and people paying attention but also bummed at the continued saga.

    • As of 11/17, I had no follow up from UNM generally or from my surgeon specifically. It is very possible the surgeon never even got the message. Regardless of the reason, the lack of follow up is not ok and at the same time, I understand it is systemic and not likely due to individual people.

    • From 11/17-11/20, I had a lot more input to process after speaking with a family friend/specialist who works at UNM. They reached out to my eye surgeon and an eye doctor, showed them pictures, and both said it actually looks good from their perspectives. Hopefully it will continue to heal, and if it doesn’t he will do another surgery but it wouldn’t be for awhile anyway. The vision change is likely due to dry eyes so to keep up with eye drops and everything I’m already doing. 

    • The variety of input from trusted sources that conflict with each other is hard to navigate. The whole situation is very frustrating at the same time that I am lucky to have people helping me get in touch and providing more input.

• With the follow up situation post-eyelid surgery and remembering my post-arm surgery challenges, I can’t help but feel frustration with UNM quality of care. I also recognize that NM is a poor state and we don’t have the resources like Colorado in general, and Colorado Springs specifically. It is still quite a painful dichotomy of care that I’ve received and makes me mad, sad, and want to change the world all at the same time.

General updates and happenings:

• Balancing wanting to do more socializing and fun before surgery, and wanting to rest and hermit at home. Feeling pretty good about my life and community as we head into the last few days before surgery.

• I’ve been doing yoga weekly and so enjoying the community movement that gets me out of my head, in a flow, focused on my breath and my movement. Ahhhh.

• No night driving and the time change is hard! I feel like a bit of my independence was taken away again. In a way, with having surgery coming up, its good timing since I won’t be driving anyway!

• With the colder weather and wind, I’ve noticed more nerve pain in my face when my ears get cold. Good thing I like cozy wraps for my head and neck.

• Disability Benefits: I finally got a call from social security, though was in an appointment and unable to answer. I’ve called back every day and despite having a person’s name and extension to call, have been unsuccessful. I’m sure the holiday is playing a role in this and hope to get ahold of them next week!

• Thanksgiving: To start... I want to humbly acknowledge that I grow, live, work, and play on the unceded ancestral lands of the original peoples of the Apache, Cherokee, Diné, Očhéthi Šakówiŋ, Pueblo, and Ute past, present, and future. With gratitude, I pay respect to the land, the people and the communities that contribute to what today are known as the State of Colorado and State of New Mexico. 

  • I have so much to be thankful for - I can't say it enough, I have such amazing support on this journey and am continuously grateful for that as well as this incredible body that wants to heal. I have crossed paths, (re)connected, deepened relationships, and been supported by a multitude of individuals in the 13+ months since my accident. I am also conscious of the immense number of privileges I hold that help me through this recovery. I’m able to acquire the things I need to help me heal – for example, I can access and afford to eat healthy food that accommodates the evolving needs of my body and mouth, I can (thanks you all of your support) continue to purchase the supplements, home PT equipment, never-ending supply of eye drops, etc. – I have high health literacy and am able to effectively coordinate/navigate my care in a dysfunctional system, I have a wonderful support community to bounce ideas off of, I have been given the gift of pro bono patient advocate partnership, I have connections that have enabled me to get in with the best medical care and attorney teams, among many other things. I can’t begin to imagine how someone without similar privileges would navigate this.

  • Patrick and I enjoyed spending Thanksgiving at home, just us with our animals, cooking yummy foods all day (breakfast burritos, croissants, crab legs, korean bbq pork shoulder), and just being together without any obligations. We haven’t had a winter holiday in our house since we closed two and a half years ago. What a whirlwind it has been! We certainly have a lot to be grateful for and feel it every day