Let’s ride this wave...
together

Keep living - Keep moving


Let's ride this wave... together

Welcome to my world.  My hope is to provide you with some inspirations, a new fresh perspective and some healthy advice.  I'm a Midwest girl living in the San Francisco bay area.  Happily married with 3 kids and a couple of cats.  Our life was changed drastically after I hit my funny bone.  I knew right away something was wrong. I was diagnosed with CRPS (complex regional pain syndrome) in the spring of 2011.  CRPS is the beast trying to take over my body.  Everyday is a blessing as well as a struggle.  Help me as I ride this wave of life through the good times and the bad, the baby steps and stumbles backwards.

Lets ride this wave... together.



Why a wave?  Good question.  Every time i was in a flare up for any number of reasons, I would lose sight of anything beyond this instant of excrutiatingly bad pain.  I started to find a pattern.  I knew the worst of it woud pass first.  Not always quickly, but it would pass.  I started thinking I needed to ride it out.  What can i do to make me feel better right now?  What did I need to do to ride this wave of pain, this wave of anger or anxiety?  What can i do to think beyond this part?  I realized it was a wave.  I needed to "ride this wave."  I needed to visualize the wave, the surf as it ebbs and flows.  It was the perfect analogy for chronic pain, disabilities and really bad days. Riding the wave is also a positive, fun in the sun, beachy thing to do.



This is me.

This is going to be my stories, my suggestions for how to keep living, keep moving.  All of a sudden, life changes, in a game changing way.  I thought I had just injured my elbow, really bad.  The doctors thought 6 weeks rest and physical therapy all would be back to normal.  I would have my life back.  Didn't happen.  I was finally diagnosed with complex regional pain syndrome.  I was advised to be cautious about searching on line as some of those stories were awful.  I stayed away.  I have always cautioned friends, family and patients against seeking advice on line.  I still caution them.  The internet can be your friend.  It can be a wonderful tool for research, for communicating, for finding crazy videos to make you laugh.  The internet can also make you crazy.  The bad stuff can be really bad.  I have found solace in on line support groups, in  all things pinterest, in shopping.  I still am cautious but I have found some great web sites that are helpful.  Check out my links page.


Seeking pain relief


This afternoon I had an appointment with my pain management doctor.  I have been seeing him since we moved to California in 2014.  I like him.  He understands me.  He understands I am trying everything I can to stop this CRPS from spreading and getting worse.  I am trying to improve my quality of life.  I want to live, I want to move freely with out pain.  He reminds me my crazy symptoms are the CRPS and they are what they are.  He makes me feel better, praising my willingness to try new things and not waiting until my symptoms are no longer manageable.  I am hopeful for a cure but praying to be healed.  Battling CRPS is mostly about managing the symptoms such as the pain, swelling, and burning sensations.  My neurological system is completely out of control and that is not easy to manage. The actual temperature of my skin can rise upwards of 102.  We bought an infrared thermometer that can test the surface temperatures.  It is generally my hands and feet that will register a temperature increase.  I can also get very localized swelling to my hands and feet making them stiff and difficult to use.  I can wake up freezing in the night, then bundle up, then start sweating.  I know many suffer with night time chills and sweats but it had never been a problem for me before CRPS.

 An important point concerning your doctor.  You must have a mutual respect for one another.  My doctor understands I do not want to just treat this with medications.  Nerve pain is not easily controlled, ask anyone who has shingles, or diabetic neuropathies.  My doctor told me today he is no longer prescribing anything stronger then Tramadol/Ultram.  The FDA regulations are getting too hard.  Luckily, I do not take anything stronger at this time.  The problem is sometimes you need something stronger whether it is an acute illness or injury or a chronic illness.  If more and more pain management doctors are refusing to prescribe narcotics, more and more people are going to be living with uncontrolled pain when they don't have to.  There is a serious problem with narcotic abuse in the US.  It is widespread and effects every state.   Addiction does not discriminate against income, housing or location.  The true sufferers are those with chronic pain who get labeled as drug seekers.  Those who get questioned "is your pain really that bad?"  I felt guilty asking my Dr for something extra for pain.  We are taking a family trip this summer and airplanes always make me hurt worse.  I should not feel guilty, but I did because I don't want to be labeled as "drug seeking".  Instead, I should be labeled as "seeking pain relief."  Doesn't that sound better?  It also does not imply medication, as "seeking pain relief" can refer to many methods including a warm bath, ice packs, or a calming cup of tea.  It means you just want to feel better.

I do not see this doctor often, my appointments are now every 6 months.  My condition is fairly stable and meeting to tell him my crazy symptoms just isn't necessary.  When we first moved, I needed my husband to drive me.  I can drive myself now but it wears me out and I get much more anxious.  My husband was able to join me today.  He drove and we had a lunch date prior to the appointment.  Our date was lovely and a nice treat before a medical appointment I wish I did not need.  A closing we use on my support group is gentle hugs and low pain days.  I think it works well for today.  Peace.


Skincare and sunscreen

May 18, 2017

Our skin is the best defense against infections, itches and the sun.  If you are prone to dry skin you may already have a daily routine which includes moisturizing.  Applying lotion can help with any itchy spots you have, maybe broken and cracked skin after winter has taken its toll.  Now that the days are sunny and warmer it is really important to start using a daily sunscreen on your face and hands.  I have used a daily sunscreen on my face, spf 15 for many years now.  My skin is now prone to burning, thanks to my medications and complex regional pain syndrome.  If I am planning to be out in the sun rather then just in and out of the house and car, then I will apply a higher spf, my skin really needs protecting now.  Sunburns hit me in a way where I literally feel my skin burning.  It is awful and something I can prevent with a little extra care.  I try to keep covered in light clothing, hats and shade.  I have noticed my hands are many shades darker then my wrist and arms.  This is from living where we have sunny days year round.  Unfortunately the sun has damaged the skin on my hands.  They are dark and blotchy now.  I have a daily moisturizer to use, but often forget to apply before leaving the house.  I like to use a daily moisturizer, its easier to apply and doesn't leave white skin behind.

My morning routine involves applying sunscreen and makeup/powder to a freshly cleaned face.  I will start including a daily sunscreen to my hands, arms, neck and decolletage.  My evening routine is part of my bedtime relaxation.  On a rough evening, I will wash my face, apply an eye cream and then an evening moisturizer.  It must smell good and feel good.  This is often applied while in my recliner at night so it is not rushed and I can apply easily to my face, neck and decolletage (where there is sun damage).  It makes me feel good.  Last night I did a double moisturizing mini facial massage.  Keep it simple, with pressure you can tolerate, small circles with your finger tips.  Again, it feels good, moisturizes and keeps your blood circulating, a win win.  Enjoy the sunny days but protect your skin, it is your best defense.  Peace.




March 21, 2017

Dear friends and family of facebook.  Many of you know I have been living with a debilitating neurological condition called complex regional pain syndrome, CRPS.  It is rare and not well understood.  There is no cure.  Everyday is a struggle, I have not had a day without pain since January 7, 2011, when I hit my funny bone.  I truly don't remember how to walk without pain or write out a grocery list without cringing, driving a car is a real challenge.
 
Fast forward to now, March 2017.  CRPS is now in all extremities.  When I have a flare up, the pain is now bilateral, with pain and sensations mirrored.  I have learned so much about my self, my body, what I can tolerate and what helps.  This is what I want to share in my blog and website.  My goal is to spread awareness of this beastly disorder.  The earlier you know what you are dealing with the better your chances are to lessen the progression.  As with all painful and chronic conditions the incidence of anxiety and depression are nearly simultaneous.  It helps to know that you are not alone.  We all need to keep living, keep moving and keep riding the wave back to a life in balance.

I will include not only my personal stories of hope and struggles, but how I am raising a family while living with a disability.  I am still a foodie.  Cooking has provided me with not only a continued passion but a type of physical therapy, forcing myself to grasp spoons or measuring cups and chopping of vegetables.  My kids are learning how to cook and sometimes need to help me complete a dish or make a meal for us.  My husband has grown from sous chef to proper chef and I love him so much for embracing the life of a foodie.   All chronic illnesses affect the whole family, there are good days and bad.  Laughter, joy and hugs are all necessary to heal.  Let's ride this wave... through the good and bad, ups and downs, and loving tears of support.
Peace. 

A foodie.

Yes, I am a passionate foodie.  I have always loved food and still do.  I love reading recipes, cookbooks, blogs.  Any magazine, I would quickly turn to the recipes and pictures of food, reading them like a well loved novel.  It took awhile before I could cook again.  I remember making cupcakes for my daughters birthday.  I insisted on trying to frost them myself.  It didn't work.  I didn't have the strength, ability or stamina.  It became such a negative and painful experience.  Thank God, I have come a long way.  Cooking is now therapy for me.  My hands are once again useful.  I have to take things slow and take breaks or my hands will start cramping in pain.  The love of food is saving me, its healing me.  On a really rough day, I have turned to making a soup for dinner or cookies for my children, and me.  The effort pays off and it is wonderful for my mental health.  I can still cook.  I love to cook.  I love to eat.


  This was our Friday Mexican feast for Cinco de Mayo!

It was easy to prepare and didn't use up all my energy as I spread out the prep work.

Flank steak was marinated early in the day, carne asada style.  Garlic, oregano, lime, Modelo, salt and pepper.  Both regular and chipotle chili powder.  Big splash of olive oil.  Smash it all together in a zip lock bag, then add steak.  Marinate as long as you can, even a couple hours works.  

The shrimp was done by my hubby, tossed with white wine, garlic and soy sauce.

There was a large dish of grilled onions, red peppers and zucchini.  I sliced all of them up after marinating the steak.  I left a small amount of garlic and red onion aside for the guacamole.

Guacamole.  Diced red onion, garlic, tomatoes, s & p.  fresh avocado.

The purple cabbage was slaw like, sliced red onions and purple cabbage.  I drizzle it with olive oil, lime juice and a cajun seasoning blend.  It makes its way into many things, tacos, sandwiches and salads.  It adds a great texture and crunch and I always feel a bit healthier eating it.

We serve it all with warmed tortillas, refried beans (canned), salsa and cotillo cheese.

The quasadilla is a kid favorite, tortilla and cheese.

The margarita on the table is a favorite from an old neighbor, a Mexican Martini.  We went for the larger glass as it was Cinco de Mayo!

Layer the tacos as you wish, we like refried beans, strips of steak, large serving of grilled veggies, slaw and hot sauce.  Wrap it all up and enjoy.





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