A.S. Face 2189: Shelley McClanahan
I’m a pretty private person & even the closest of people may not know my daily battles with my own body & health. About 14 years ago, I woke up & had no clue that my life would never be the same & certainly wouldn’t have believed the battle would be a daily matter the rest of my life. In hindsight, it goes back to high school. I had a lot of back pain, shoulder pain, GI problems & oddities like my ankles constantly popping when I walked. Although complaining of this pain or bringing it up, made me feel like others thought I was crazy or at best a hypochondriac, but when I woke up that May morning years later I knew I was terribly sick. I was 30 years old & it took every single ounce of strength in my body to get out of bed & walk a few yards to the bathroom. My toes had been hurting like crazy for months & being a nurse, had discussed with the family medicine doctor I worked for, but if you know medical, there wasn’t much sympathy or compassion. In my mind, my symptoms seemed odd & not very realistic to others including the man that entrusted me to care for his own patients. It felt like someone had beat my toes with a sledge hammer. Little did I know, that was the minimal pain I would have from that point forward. That May morning was a horrifying one as I had systemic fever as well as fever in all of my joints, stiffness & the most nauseating pain I had ever endured. After 3 days in the bed of fever, pain, stiffness & the fear…..oh the fear of what in the world was wrong with me. This intrigued & almost challenged my professional cohort & he decided there may be a lot more to this now. Within a short timeframe, my friend & coworker, had a similar bout of illness which only intrigued my doctor more. This is when Parvo virus was first mentioned. You typically think of Parvo in dogs & not humans right? Well, we had seen numerous cases of 5th’s Disease which is a childhood illness. Adults can often contract these so called “childhood” diseases if they never had it as a child or had a mild case as a child. Symptoms often present different in adults than children. That’s where my journey to diagnosis began. And I didn’t want just any diagnosis, but the correct one. I was referred to a rheumatologist for my mystery illness as was my friend. After a thorough history & physical, the L word was thrown out there. I can’t possibly have Lupus, Lord please please don’t let it be Lupus!!!! I have several friends past & present that fight this disease & I begged for mercy not to join them. After a multitude of lab work it was determined that I didn’t have Lupus. I praised God for that & then quickly realized these people have no idea what’s wrong with me & the fear quickly returned. This specialist was by far brilliant, quoting many journals & the latest studies, but at the end of each visit, her answer was clear. She simply didn’t know my exact diagnosis, but was definitely an autoimmune disease. She would often say “Shelley, rheumatology isn’t black & white. There’s a lot of gray areas & many autoimmune diseases have similar symptoms.” Although she couldn’t give me a precise diagnosis, she was quick to offer risky & potent medications to treat my symptoms…..even an old chemo drug. I was horrified. Medication after medication, one caused diarrhea, the next caused nausea & indigestion, the next one caused fatigue & flu like symptoms & the list goes on. Methotrexate was commonly prescribed to my patients, but me?!? No way, I’m not taking that poison, yet after many visits of refusal, I gave in & agreed to give it a try. My pain had worsened & I just wanted to be “normal” again. Actually, I don’t know what normal is anymore. I was asked “what would you like to do physically that you can’t do now?” The answers came quickly…… 1) I want to be able to get down in the floor & play with my kids 2) I want to be able to open the dryer one handed & better yet 3) pick up the laundry detergent one handed. These are goals people!!!After a couple of months of weekly doses, I was done with the side effects. I had kids & worked full time & the weekends weren’t long enough to take the weekly dose of poison, then recover from those side effects. I tried a multitude of medications over a couple of years, mostly not helpful, until I started Embrel. A controversial biologic that’s an injectable. I’m familiar with this medication as it’s one the patient has to sign their life away before starting due to all the potential side effects & complications including but not limited to different forms of cancer. It treats autoimmune diseases yet it decreases the immunity at the same time. It was my miracle drug…..for just over a year of self injections my pain had decreased significantly & all the potentials of problems were a risk I was willing to take in my book…..until it stopped working. This is common with biologics. They may work beautifully, then one day BAM, not anymore. I went into remission during my pregnancy with my daughter as told I probably would. This is a common occurrence & I was so thankful, BUT not long after she was born, it not only returned, but with a vengeance!!!! I wasn’t happy with my passive yet aggressive approach from my current rheumatologist, so I changed to a different one in Tyler. He came highly recommended & was the “best of the best in Tyler.” Well, there were several red flags right off the bat. He wanted to do specialized, extremely expensive tests sent to Florida to be read, he gave me many medications including 90 Vicodin a month that I regularly declined yet he handed me the script every visit, he gave me a steroid infusion that wasn’t approved by insurance yet his office said was approved causing me thousands of charges, he even went as far as to give me refills on all meds even though I told him I was horrified of the long term effects. I fired him & was scared to death of having no doctor & no access to medications should I truly need them or worse yet, be in enough pain & desperate enough to risk vital organs for some pain relief. I eventually went to another Rheumatologist at UT Southwestern & he was almost certain of my exact diagnosis. After multiple tests & labs, I was finally diagnosed with AS. After 2 more biologics over 2 years with no relief at all, I stopped all meds. I’ve tried everything suggested from herbs, supplements, etc with no improvement. The past several years, I’ve relied on OTC anti-inflammatories, small doses of pain meds prn & heat…..any type of heat is most helpful along with stretching. I have plenty of flares & fatigue along the way. That’s when I resort to Prednisone & most recently Toradol injection, followed by 5 days of oral. I empathize & pray for you all!!!! I pray for pain relief, energy & more good days than bad. I give thanks for the fact that it isn’t any worse, yet pray for a cure. Bless you all & thanks for taking the time to read my story!!!
