Who would have thought at 31, almost 32, I would spend ½ my leisure time out of the house using a wheelchair? Is it half? My journey with AS began in April 2008 during one of Georgia’s colder winter storms when we did not have central heat in our home. See, we are one of those families that still live in the poorer communities in the “darker ages” and we depend on other sources of heat most winters so ice storms are exceptionally hard on us. My first symptom was excruciating pain in my heel with a bright red color. Then my knee and elbow joined in just for fun. I managed for almost a week or two like this and couldn’t deal with the pain anymore so I asked my husband to take me to the doctor.
The doctor examined me and asked many questions. She asked about my family history, my symptom duration and severity and even about my past health issues. I tried to think as hard as I could and filled her in with as many details as I was able. She decided it was some type of “arthralgia” and took some blood work as well. She focused mainly on RA or rheumatoid arthritis and took an RA factor due to my strong family history of RA and referred me out to a rheumatologist while waiting for my lab results to return.
The results came back and I was RF (rheumatoid factor) negative (I think my level was almost negligible at 4 or 5) But my CRP or inflammation levels were very high. I was to continue with my referral.
My first rheumatologist, who sadly I found out later happened to have a malignant brain tumor, ran a very large panel of blood work. He tested everything from vitamin D levels to RF factor of his own, to CRP levels, to blood counts, to I believe an ANA (antinuclear antibodies) and whatever else you could possibly run I imagined- although he never ran his own HLA gene testing- I am guessing it just never crossed his mind. He examined me physically though didn’t seem to want to physically touch my joints much or truly examine them. Just questioned me a lot and spent quite some time on my feet and hands. This frustrated me because I had joint pain in other places, especially my initial places- my heel, ankles, elbows and spine- the spinal pain did nothing but get more and more painful over the next two years I saw him. He hands me two pamphlets, one on RA and one on PsA (psoriatic arthritis) and explains you can have PSA without psoriasis present and leans heavily on this diagnosis until I finally decide to leave his practice believing I honestly do not have PSA. I did tons of research and spent hours online speaking to other patients and researching PSA over and over and it just wasn’t the right fit I felt. I honestly felt he had made a mistake. I felt I had wasted TWO years of my time, my health and my family’s time trying to accept something that wasn’t part of me. Something that never made sense at all in my case. Sure I had x-rays done but once a year and they hadn’t shown anything according to this rheumatologist and they were only ever done on my hands and feet in his office. An MRI was never recommended, no x-rays of my ankles or knees- nothing and nowhere else when I was in agony in other joints and sometimes couldn’t walk. I was beginning to deteriorate. This doctor began to tell me to use a cane and told me how to use one before I left his practice. Gave me a word of advice about using a shopping cart in place of a cane when I was shopping- it was welcomed advice yes, but I was afraid and he was not reassuring me. The only thing I truly liked about this doctor was if I ever wanted to know something, I could ask him and he would spend the extra time with me and educate me but I didn’t feel reassured with my diagnosis. He never explained why to me that he felt I had PSA.
I should note this rheumatologist was also my allergist/immunologist and was the first doctor to ever understand the importance and DRILL it into my own head the importance of avoiding foods and foods in relation to those I had a severe allergy to. He also could not believe I had no EpiPen and quickly prescribed and showed me how to use one. I hope I never have to use it but I can be grateful he did this for me. 90% of this he did and 10% a nurse did in this. He did not make a nurse come in and explain everything and show me everything and I think that’s why I always remember now why it’s so important. I love nurses, don’t get me wrong but for some reason I just needed that particular information to be slapped in the face with and I guess I needed a doctor to do it. He also explained everything about my asthma and always provided wonderful treatment for my asthma. My asthma was never out of control when I saw him. I wonder sometimes if he should have redirected his specialties 🙂
So on to the present….
For the last year and a half, I have been seeing a female rheumatologist. She is wonderful, and has the best beside manner but her office is run, well like s*$&. The ladies who run the front desk and the nurses are some of the nicest people you could ever come in contact with but if you need something done- forget about getting it done in a timely manner. We are talking MONTHS if not longer and then it gets done. But I digress, every three to six months that I see her she runs a full panel of labs and I mean a FULL panel. She checks my kidney and liver functions while on treatment as well as my inflammation levels. Sounds like what they are supposed to do right? Yup. In all my treatments, my old rheumy had me switching DMARDs every so many months but left me on Enbrel for the two full years with no progress. She has left me on Methotrexate because it does help slightly, and changed me from the Enbrel initially to Remicade infusions which were awesome and had me pain free for many months to now Humira which is helping but not near as well. Humira weekly works almost as well as Remicade but I am having issue after issue with my insurance company. We won’t authorize this or that or we won’t pay this until you pay $1500 up front and the companies that assist won’t pay until you order and you can’t order until you pay. It’s all a catch-22. So this doctor changes me to Cimzia, a weekly injection but I have been waiting two months now for the prior authorization from her office to be returned to my insurance company. Lucky me, I had a Humira refill so I am using that bi-weekly to get me through until they do their job. Bitter? Yes, I am.
Off on a tangent again, sorry. So this new rheumy takes x-rays when things get real bad and every year. She herself has noted damage that she has discussed with me in my wrists, esp. the right, and my ankles. We have not discussed my other joint’s x-rays. She has noted osteoarthritis in my knees as well. I have Reynaud’s, debilitating migraines, mental illness, as I mentioned before- asthma, kidney issues, and hypertension and reflux disease with Barrett’s esophagus. I am being evaluated for Narcolepsy in a week as well with catalepsy. All these affect me in its way and affect my AS in its way. I asked the rheumy for an official diagnosis as she knew my old diagnosis. She maintained the last few times that I in fact do NOT have psoriatic arthritis, there was no evidence, and that if anything she would call me an AS patient. She felt I have ankylosing spondylitis however it is HLA negative and yet my ANA has always been positive. She hesitated at first when I asked her this last time. I think she thought I was asking her a trick question lol but I don’t think she understood what I had been through and how important the diagnosis was to me. I HAD to know. You see, I AM a face of ankylosing spondylitis and the more I can admit that, the more I can accept it and move on with my life because I can’t go some places now without my wheelchair or my cane and that’s not always easy.
My condition of my spinal pain has deteriorated that much. I don’t know the actual condition of my joints personally but she wrote the prescription for my wheelchair because she understands I cannot walk long distances anymore. I can’t walk hills or run. I can’t walk more than so many feet. I have pain, fatigue, my asthma puts me out of breath and I am down for half a week after real physical activity. My cane hardly helps anymore. If I drive anywhere alone, I have to lug that wheelchair out of the back of my truck. Do I have the money for a trailer on the back of my SUV? No- because we just don’t have that money and I can live with that for now. For now I have a standard wheelchair because I have no trailer for a power chair. I qualify for a power chair but do not have the money required for the things insurance doesn’t cover to use one. I am just grateful my arms still work well. I never in my life thought I would be where I am at today at such a young age with a teenage daughter, in a fresh marriage but even though some days are hard I can honestly say I love life. I have respect for life. I AM a face of AS just like many of you reading this. You are not alone and I realize now that I am not alone and that makes me feel that much stronger in my fight.
-Written originally for The Faces of Ankylosing Spondylitis.-