5/11/2021

Thetis bathed Achilles as an infant in the waters of the River Styx, thus making him all but immortal: only the heel by which she held him remained vulnerable. (Source:https://www.greekmythology.com/Myths/Heroes/Achilles/achilles.html)

If Achilles’s heel was left out of the river, someone living with Ehlers-Danlos Syndrome might say they weren’t even invited to dip a toe in the River Styx. I can go days, even weeks, without being reminded I have EDS, and then on some arbitrary Thursday walking upstairs, bam, my body reminds me. At first, I thought the dog hit me with her nose on the back of my calf. It’s not unlike her to bop me with that long white snout, but when I turned, she was not there. I felt a pop as I faced forward and fell into the last few steps at the top. My shinbone felt as if it was broken in two. I planted my right foot on the wooden steps as my body assumed the familiar position of falling. Drop whatever is in your hands, arms out, protect your head. Sometimes I can brace myself, and at other times I find myself on my back on the ground with my hands on my ankle, or knee, or whatever body part stopped working that day.

Afraid to look at my leg, I pulled myself up the last few steps onto the landing. Turning myself over, I dragged myself with my arms into my office. I had never broken a bone before. Those seem to be pretty sturdy, so I was not sure what it would feel like, but the pain in my calf was not pleasant. My stomach turned, making my body react in the worst way possible. Nausea. Some people would prefer that feeling over pain, not me. I would rather feel the pain of a torn Achilles than nausea any day. Sweat formed as I tried to slow my breathing down. Nausea, sweating, tears, and fear create a perfect storm of mutability. I have a hard time speaking, and I do not want anyone near me. I looked for pooling blood on the ground, but I did not see any. The shoes I wore were knock-off Uggs, so they came up too high for me to see if my shin bone was jutting out. Pulling myself up to sit, I reached down to feel my leg. With some relief, I felt a smooth shin bone in the exact location it should have been, but I could not get the boot off.

Luckily, I had my cell phone on me. My husband was in the city working, but I knew my father was home. I couldn’t bring myself to ask Siri for help, so I hit favorites and dialed his number. The only words I could get out were:

“Dad, I need you.”

In my mind, I said, ‘I’m not dying,’ but those could not make it to my lips. He said he was coming, and I hung up the phone, laying back down trying to stop the nausea. Suddenly, I heard my husband’s voice. I do not know how I called him. Slip of the finger, maybe? The shock of hearing him pulled me out of my inability to speak as I tried to explain what was going on. He kept talking to me as the nausea subsided. Of course, I didn’t see a need for him to drop everything and come home. I was fine, and even if my leg was half off, he’s not a surgeon; what could he do. It would take him an hour and a half to get here, and by that time, I would either be in bed with my leg up or in the ER. He got on the road anyway.

I find this aspect of my personality very annoying. When I am in pain, my first thoughts go to the other person. I do not want them to worry, I do not want to be a burden on them, I do not want them to feel obligated to help me, and I do not want to disrupt anyone else’s peace. Two years ago, in the emergency room, I asked for a pillow to muffle my blood-curdling screams because I was afraid I was upsetting the rest of the ER. Every few minutes, when the pain would take over, I would scream into the pillow. If I could have kicked my family out of the room, I would have. I laid there in excruciating pain, worrying about how they were feeling because of my behavior. But that story is for another day.

When my father came, he examined my leg, and we concluded it was not broken. There was no bruising or swelling, so I stayed home instead of going to the ER. The pain that pulsed through my leg was bearable compared to other accidents, so I went to lie in bed with my leg up. After consulting Dr. Google, I concluded it was a calf strain, and I would stay in bed for a day and see how I felt the next day. Being someone who frequents the medical bouquets, I had a nice gray boot from an old accident. The boot held the ankle and calf in place, taking the pressure off. By Sunday, the swelling and bruising kicked in. I made an appointment with my local urgent care, and the physician’s assistant on duty said she thought it was my Achilles. Since the pain was in the middle part of my calf, I would have never guessed Achilles. She suggested I see an orthopedic as soon as possible and told me to keep the boot on.

Monday morning came and at 8:30 am on the dot, I called the orthopedics office. The doctor I wanted to see was booked, so they scheduled me with Dr. C. I knew that would happen, but at least someone would see me, and I could get some answers. I had a 10:00 am appointment and drove myself there. Of course, that wasn’t a good idea. Of course, I should have asked for help. But why do that when I could do it on my own? My decision did not thrill my husband, but after 15 years of marriage, he knows which battles to pick. I was not ready to give up this hillside just yet.

As I walked into the large office building, I realized I would have a long, grueling trek ahead of me. Even if I had asked for help, I didn’t have a wheelchair. It was not like Jason Momoa would have swung me over his shoulder and carried me up to the office. So I took my time awkwardly getting to the elevator and then faced walking down the longest corridor in history to the office. When the nurse came out to bring me to the room, I was shocked. He might have been able to swing me over his shoulder. I explained everything to him and repeated twice that I had EDS and what that meant. I was told I needed an X-ray of my leg. There was no wheelchair offered to take me to X-ray and no genuine concern for my well-being. I walked down the longest corridor in history again, trying to keep up with the X-ray tech hobbling along into the elevator and to the X-Ray room. After just one X-Ray of my leg, not my ankle or knee, that confirmed my fears; they wanted me in and out. They did not listen to me when I said I had EDS. They snuck me into the schedule and didn’t have time to deal with me. So this time, I made the longest corridor in history even longer. I took my time. I stopped worrying about keeping up with the tech and went at my pace.

Once back in the room, the doctor came in. I should have looked up his specialty, but I did not think being a spine doctor would eliminate one’s ability to care for someone with a leg injury. I wasn’t expecting him to do surgery, but I thought he would look at my leg. He explained the X-ray was good, and I may have a calf strain. He did not ask me to sit on the table, take my boot off, and he certainly didn’t touch my Achilles or calf. I explained EDS again and received the glassy-eyed look that I get from certain medical professionals. They know everything there is to know about EDS after reading that half a page essay about it in their medical books. So I stopped talking. He said he wanted to get an ultrasound to see if I tore anything. I asked for a temporary handicap placard, and you would have thought I had asked for Fentanyl.

“We’ll see what the ultrasound says,” he said.

I found that statement funny. The Physicians Assistant at the urgent care examined my leg and came up with the conclusion that I had an Achilles tear. She may make a quarter of what this man makes in a year, and she provided more information and help to me than he did. He had my complete medical history in front of him from the last time I tore a tendon two years ago, EDS diagnosis, vitamins I take, and the migraines I get twice a week. I was told at the front desk it could take up to 7 days to get an ultrasound approved, which was not good enough for me. In fact, not only did they make me choose a place to get the ultrasound, they told me I could not shop around for scheduling or price. Whoever I picked right then, I would have to go to.

Now, as a frequent flier in the MRI, X-RAY, Ultrasound field, I knew that none of that was right, but I could not stand around and argue. I was in pain, and I would go over her head if I couldn’t get an appointment with the place I had to choose. I would also call my insurance to straighten things out if it went over a day. Thankfully, when I got to my physical therapist, they called to tell me I didn’t need approval for the ultrasound, and I could get in that afternoon. Mondays and Fridays were PT for migraines, and although it would have been the smart thing to go home, I didn’t. As I hobbled into my PT’s office, he offered to look. With a few quick tests, he examined the leg like the PA and told me it was an Achilles tear. He asked me what the ortho concluded. I explained what happened, that I had a plan, get what I need from him, and find a competent doctor to take me the rest of the way.

That evening I received a call from DR. C. He told me the Achilles was partially torn.

“Keep wearing that boot. Come back in two weeks, and if it isn’t healing, I will send you for an MRI. If it ruptures before, then go to the ER.”

“How will I know if it ruptures?” I asked.

“You will know, you will be in excruciating pain.”

What the actual fuck. Is it me? The boot I was to keep wearing during the healing process for two weeks was not the correct apparatus to have. That was clear by the 900 articles I read online. It in no way pointed my foot down, creating a closer connection for the Achilles to heal. I called the lab and asked to see the ultrasound results but was told that I had to wait 7 days. I scheduled my second opinion with Dr. M., my preferred ortho who fixed my patellar tendon tear, but he was booked out a week. At least I knew I would be in excellent hands once I saw him.

With covid, you’re not allowed to bring people in with you. My husband waited in the car after he assisted me to a chair. Low and behold, my nurse was the same nurse I had a few days prior. He asked how I was, and I explained Dr. C did not do his job, and I was here to see someone who cared. OK, so I was snippy, but that was to be expected. I asked for the ultrasound results, which he gladly gave me.

At least high grade partial tear of Achilles tendon with diffuse tendinitis, thinking and pre Achilles fluid. A more focal area mid Achilles correlating with pain is concerning for more full-thickness tear component. MRI would better define.

Dr. M walked in and smiled. Of course, with masks, you can not see someone’s lips, but you can see it in their eyes. He asked how my knee was holding up from the surgery two years ago, and I said, great. I explained in depth what I did, how it felt, and where I was right now as far as pain and walking ability. As I sat on the table, he examined my leg and told me he wanted to do a test to see if the Achilles had ruptured. I inquired about an MRI, and he explained the needle test was more accurate. Needle test. One more time…. Needle test. Alone in the room, my husband is in his car. My stomach turned, and I warned them I could faint. I fainted once from an eye exam over 10 years ago, that damn green light, and because of that, I have it in my head that I am a fainter. I get all the symptoms of pre-fainting at certain doctor’s offices but never do. Every year when I get blood drawn, I warn the vampire that I could faint and make them set the bed up to lie down. My concern is for them. Do they need to be picking up a person from the floor or thinking I just had a aneurysm?

He asked his nurse for the long needle. He gave an exact measurement that seemed like it was 25 inches, though I know that’s impossible. I laid face down on the table and pulled my mask down a bit to get cool air. He sprayed my calf with a numbing solution as I started my breathing. I had just gone through months of acupuncture for migraines and found my tolerance for needles had much improved. The issue was my brain. I could not explain to my brain that fear was unnecessary in these situations. He inserted the needle. I waited. He pulled it out. It did not move.

“It’s a complete tear.”

I burst into tears. He handed me a tissue.

I didn’t break down at that moment because of the news. I broke down because the first doctor didn’t care enough to help me. Come back in two weeks, is what I heard in my head. Now maybe if I did not have EDS, this might be a more acceptable answer though I think he should have examined me. And once he found out it was an Achilles tear, he should have had me back in for a proper boot fitting instead of the one that was hiding in the back of my closet.

I had two choices. Surgery or let the body try to heal. Given my recent stint down the rabbit hole of Goggle, I found out that surgery’s re-rupture rate was much lower. It would also help strengthen the area as well. I literally was walking up the stairs. If this was going to happen again, I needed to make sure I did everything I could to avoid that scenario, and avoiding stairs for the rest of my life was not an option. Given my slower healing rate and faulty connective tissue, it just made sense to be as conservative as possible. Dr. M laid out my options and did not pressure me either way. I explained my theory, and he agreed.

Outpatient surgery was scheduled, and I felt I had made the best possible decision for my body. I knew this will be an eight to ten-week healing process filled with writing, binge-watching Netflix, and becoming annoyed at my lack of independence. This is a small price to pay for peace of mind that this will give me later on in life.

I was not dipped in the River Styx so my mortality relies on my ability to self-advocate and my medical teams’ ability to guide me to the best possible outcome. I called the practice to explain my disappointment with Dr. C and my confidence in Dr. M. Being your own medical advocate is difficult. It can be intimidating as well as disheartening when you feel like a doctor is not listening to you or does not care about your well-being. I had to get over those feelings to navigate who I wanted on my medical team. A doctor does not need to be compassionate, but they need to be passionate about my care. I do not need them to cry with me or tell me they understand (though that would be a plus- not the crying part); I need them to exhaust the possibilities of their knowledge to make sure I am getting the best medical care possible. Thankfully I have found a handful of medical professionals that I can rely on when I find myself in need.