Wednesday Walker Spotlight – Sara by Chris Scott & Sara Sheibley
Hello Walkers!! Week 7 is in the bag and what a week it was! I want to welcome all of the new folks that have climbed on board to push our cause and to help us meet our goal of walking to the Moon…
This weeks Walker Spotlight is going to shine on our very own Sara Sheibley. You all might recognize her from her “Tiara Tuesday Talk” segments on WalkYourASOff.com . She is a wife and mother of 4 and has dealt with chronic illness most of her life. Here is Sara’s story in her own words..
I woke up one morning just feeling sick. Not really sick, no vomiting or any of that stuff, just bone dead tired. For a whole week I got up, I went to work, I came home and slept on the couch then I went to bed. Finally I saw my CPP doctor and he referred me to a Rheumatologist. He knew I had fibromyalgia but was beginning to think there was something else wrong with me. It took 2 months to get an appointment, so in the meantime they had me get MRI’s, x-rays and blood work. I spent 2 hours waiting to see him for 15 minutes. He told me I was HLA-B27 positive and my x-rays show gross amounts of osteoarthritis. My MRI however pointed to the start of Ankylosing Spondylitis.
I had never heard of this before so he gave me some brochures and the names of a couple websites and sent me on my way with a prescription for a strong NSAID, lidoderm patches and Volteren gel. I left in shock. I went home, told my then fiancé what I had (of course I couldn’t pronounce it) and we began to do some research. It was obvious that some of the most grueling and mysterious issues I have had since around the time of puberty were a direct result of this disease. This began my quest to “fix” myself. I went to physical therapy, I took all the medicines, I did all the research but my fatigue and some weird side effects still plagued me. I was having severe swelling that lasix wasn’t fixing.
This is how I found out I was allergic to Salicylates. All of them. No asprin, no ibuprofen, no green vegetables…. The list grew and I had to admit that my first line of offense was gone. We looked to a new treatment, Enbrel. Suddenly after 2 injections, it was like I was the old me. I had very little fatigue, a few aches but I was so much better. Of course with every drug there are issues and over time the enbrel wasn’t working so well and my neuropathy was getting worse. Soon I developed severe weakness in my legs. Off the enbrel and onto a new drug, Humira. It didn’t work. The pain was terrible. I couldn’t get out of bed, it took hours to get up, get ready and go anywhere.
With only a few options for medicines the doctor thought would treat all my symptoms he chose IVIg. I went for 4 days and had the treatments done. Losing time and work and developing some severe headaches were worth it because by day 2 I felt great. Then Friday came and I had a rash. I went in to see the doctor but he dismissed it as a side effect. That night I was in the ER then admitted for Hemolytic Anemia. My kidneys were killing off my red blood cells. The good news is that due to my persistence, there was only minimal kidney damage done. The permanent result is distal tube damage and steroid induced lupus.
The next time I saw my doctor he told me that he was out of options and that I couldn’t have Ankylosing Spondylitis because I was a woman. I was shocked again. Here the person who told me I did have this illness is suddenly telling me I don’t because I’m a FEMALE?!?
I turned to my neurologist who recommended another Rheumatologist and of course there was another wait to see him. In the meantime I decided to do a full medication cleanse. What a mistake! While I was being over medicated, I still needed some of those medicines. I also found out I had a brain tumor during this wait; a benign pineal lipoma was residing in my brain between the cerebellum and my brain stem. Needless to say, by the time I was going to see this new doctor I was ready to get on track. I was back on gabapentin and minocycline for my neuropathy and chronic lyme, trazadone to help with the insomnia and dexilant for my horrid GERD. I was taking allergy meds to combat my problems with angioedema and chronic urticaria and I was on track with seeing my Primary Care to manage my slight diabetes and high cholesterol.
My first visit was a disaster. He was brief, he wanted tests and he dismissed me quickly. When I had all the testing done, he called and said I had nothing but normal wear and tear of age and was referring me to The Spine Center for pain management. I was devastated BUT I promised myself I would follow this through. I actually was able to get in to see the pain management doctor fairly quickly. In 3 short visits he concluded that I have facet joint arthritis, bursitis, scoliosis and spondylosis of the neck. He then said to me, “These are all signs of Ankylosing Spondylitis and with the chronic inflammation of the lower lumbar and those 3 bulging discs, I’m sending you back to Rheumatology.”
These days I’m back on Enbrel, for now. I jump through all the hoops at pain management. Facet joint injections, bursitis injections, pain medications. Ice packs, heating pads, special pillows, physical therapy (when I can afford it), tens units, back brace and keeping all my appointments. Do I feel great? Sometimes I do. Some days I can still barely get out of bed. The weather can change it from a good week to a bad week with a shift in the barometric pressure. Sometimes even sunny days hurt. Some days I sit too much, some days I don’t sit enough and I am known to frequently “over do it”. I decided to step up and help with the walk this year because helping people understand AS means a lot to me. Also, I get to sit down while I write!
I learned a long time ago to stop trying to get cured and keep trying to be “fun”ctional. My positive attitude keeps me going, as well as my spouse who most days doesn’t mind doing both our shares. Then there is this community of rag tag disease riddled people who I love with all my heart. They are there for me and I hope I am always there for them. When life give you lemons, throw it away and eat an apple. (I can have those)
I hope that everyone has a great week!! Keep stepping, we’re going to party on the moon!!
If you would like to be a Wednesday walker Spotlight or have a team member with an interesting story to tell, Contact Chris Scott at facebook.com/WalkYourASOff or facebook.com/MoCoChris
Chris Scott was diagnosed with Psoriatic Spondylitis in 1999 and he’s been waging a war on AS since. When Chris received the diagnosis, he went to work to find out everything he could about this AS & he works along side his Rheumatologist, hounding him about new drugs and therapies. AS finally forced Chris to leave his job as a Firefighter/Paramedic in 2009. Since that time, he’s come across many, many wonderful people and has had the pleasure of meeting several ASer’s at various AS Events around the Mid West and Canada. Chris writes our Wednesday Walker spotlight.
Wednesday Walker Spotlight – Sara by Chris Scott & Sara Sheibley