Written by Sheryl Rehs for the RSDSA blog.
This is a story about adversity and fear. It’s a story about emotional and physical pain, but ultimately, it’s a story about acceptance and hope.
Hi! My name is Sheryl and I’m 56 years old. I’ve lived in Tucson Arizona since 2005. I moved to Tucson leaving my entire family in New York due to medical reasons. I was married for 23 years, have two incredible children, ran my own company, and was truly overwhelmed with stress.
In 2005, I was diagnosed with Multiple Sclerosis (MS). For three years I had horrific brain fog and fatigue. Divorced and remarried, I was a triathlete at that time and was in the best shape of my life! For treatment, I started daily Copaxone injections that started making indentations all over the injection sites. Then I received Tysabri infusions once a month (thank goodness for good insurance). After two years, the brain fog lifted and my MS went into remission. I had MRI brain scans every six months and I always asked the radiologist if I could just see the scans since I knew what the lesions looked like. I clearly remember seeing my scan and looking at the radiologist, asking if lesions could or would go away because I saw they didn’t have the light they usually do. She said “lesions never go away but they do become inactive!” I was flying high! My doctor confirmed the scan’s findings. HOPE!
In 2010, I was diagnosed with Rheumatoid Arthritis (RA). My hands were crippled. My rheumatologist and MS doctor both agreed that I was very “special” having MS and RA. Rare but it does happen. I’m so thankful they were working together to help me. I eventually went on Rituximab (Chemo) infusions every four months! It helped so much with the pain in my hands. The first treatment is 5 1/2 hours and the second, two weeks later, is 3 1/2 hours. I did it every four months. (I’m still doing them every six months). HOPE
I’ve always had a very positive attitude. My parents brought me up believing I can do anything I set my mind to. That applies to overcoming pain. As long as I have HOPE!
In 2014, I was on vacation in Michigan with my partner at the time. I remember we were talking about moving a rock, the next thing I remember was looking up at the sky and saying I can’t feel anything, it’s so beautiful. I flipped over the Rock and broke my neck. My family wanted to transfer me to NY but the surgeon warned if they moved me, I-would become d be a quadriplegic. The surgeon performed a laminectomy. I was in the hospital for three weeks. They sent me home with a feeding tube because they couldn’t do any more or for me.
I ended up with a severed nerve in my Central Nervous System. I came back home to Tucson going to extensive physical therapy (PT). A blessing occurred. They had trouble putting in the feeding tube and used a small camera. A small mass in the lining of my stomach the size of a pea was discovered. When I was home and stable, I went to the Mayo clinic to check it out. They were confident it was nothing but they were wrong, it was a schwannoma in the lining of my stomach. They called it a serendipity! If the feeding tube had not been inserted and the schwannoma not discovered early, they would have had to take out most of my stomach. Feeling blessed and again hopeful
That March, my doctor told me I should start exercising again but slowly. As an extreme athlete, I thought yoga would be the best way to start. Easy? Yeah… No! My body was trembling the first few weeks and eventually, thank goodness for a fantastic yoga teacher Brianna Arndst who helped me regain my strength and develop a true appreciation for meditation. I was on a lot of opioids at that time. I hated taking pills, disliking how opioids made me feel. It reminded me of the brain fog I lived in during my MS days. I came off all opioids and pain medicine cold turkey. I wanted to kill myself! A friend suggested contacting a physician who specializes in pain management. I contacted the NY Pain Institute and spoke with my MS doctor. We were on the same page. My doctor suggested a temporary intrathecal pump temporarily until I could become a candidate for stem cell surgery. I went for several procedures before they implanted an intrathecal pain pump. At first they put morphine in. I itched like crazy, then fentanyl, same thing, then Clonidine! Yes- finally pain reduced from 9-10 to 3-4! Glorious! HOPE! Over the next two years I could never get below a 3-4 pain level even increasing up to a 10 plus during monsoon season or the cold weather. Now I was still waiting for the stem cell surgery…. still lots of HOPE!
In April of 2018, I broke my ankle, tib and fib. My surgeon, Dr Dalal at TMC was concerned. I looked at him and said “It’s only a break, I’ll be fine! If it’s more than that we will have another conversation” HOPE! Well after my cast came off I was diagnosed with CRPS. He jumped on it! He called around and I saw a pain management doctor the next day, Dr. Cornidez at PISA. Dr Cornidez and his team of doctors started lower lumbar sympathetic nerve blocks. I had some relief after my 5th injection. After my 9th block, Dr Cornidez and I conferred He is an amazing, positive physician! I’m so thankful to have wonderful positive doctors helping me. I’ve had 24 injections and my ankle is almost back to normal. After every injection, I went to PT. I also started getting results after seeing my metaphysical therapist once a week. I had my primary care physician fill out paperwork for me to get a handicap sticker for my car. My doctor applied for a temporary sticker, he knew I’d conquer the CRPS and be able to walk again normally. That’s was huge for me! More HOPE from another great doctor.
I truly believe it’s a 360 approach to promote help healing. I exercise six days a week (whether I want to or not, I meet a friend who lost her son and we are committed to meeting five days a week). I meditate every day, eat a 90% plant-based diet, I see my Chinese guru reflexologist for a massage every Sunday and maintain a very positive attitude each and every day! Again, I do lose it every once in a while but for the most part, I choose to smile all the time! I’ve tried everything and anything someone has suggested; my life is all about healing my ankle and getting back to the norm of a severed nerve in my central nervous system. It’s crazy what our new norm becomes after an injury. I’ve also had great success with a sound bath. A sound bath is the sound of crystal bowls which helps reset your CNS. I’ve been to a few group sessions and felt the vibrations in my body. Brianna Arndst offers private sessions. I’ve done 2 private sessions. The first time I felt like the bottom of my stomach was falling out and then this incredible electricity went through all the limbs in my body. It’s was nothing I’ve ever felt before. I loved it. I did another private session last weekend with her and this time, I felt the electrifying feeling from my right hip down to my right foot the entire time (that’s where the CRPS is). When the session was over, my ankle was warm and the blood was flowing, still a little swollen and slightly burning. I had my last lower lumbar sympathetic nerve block on Monday! My doctor was thrilled at the progress. I saw my PT on Tuesday, she too was extremely excited and hopeful at me progress. I know deep down in my heart my doctors jumped on my CRPS and I’m going to be okay. I’d love to help in any way to raise awareness for this horrific disease. If doctors can diagnose it immediately, I truly believe we can conquer this deadly disease. I’m here for anyone who needs HOPE and support. (Editor’s note: Sheryl’s email is firstname.lastname@example.org)
Please please please…. never give up there is always HOPE💞
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