📍This story has been changed grammatically as of August 2017. New edition coming soon!📍
Who would have thought at 31, almost 32, I would spend ½ my leisure time out of the house using a wheelchair? Was 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 were 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 ex-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 I felt it just wasn’t the right fit. 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. He 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 of avoiding specific foods and foods related 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 to me. I think that’s why I always remember. 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. I suppose I needed a doctor to do it. He also explained everything about my asthma and always provided wonderful treatment for my asthma. It was never out of control when I saw him. I wonder sometimes if he should have redirected his specialties 🙂
After switching –
For a year and a half, I had been seeing a female rheumatologist. She was wonderful, and had the best bedside manner but her office was run terribly. The ladies who ran the front desk and the nurses were some of the nicest people you could ever come in contact with, however; if you needed something done- forget about getting it done in a timely manner. We are talking MONTHS if not longer and then it would get done. But I digress, every three to six months that I saw her she ran a full panel of labs and I mean a FULL panel. She checked 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 had left me on Methotrexate because it did slightly help and changed me from the Enbrel initially to Remicade infusions which were awesome and had me pain free for many months. Humira was afterwards which was helping but not near as well. Humira weekly worked almost as well as Remicade but I was having issue after issue with my insurance company. They wouldn’t authorize this or that and wouldn’t pay a certain price until I’d pay $1500 up front. The drug companies that assisted wouldn’t pay until I ordered and I couldn’t order until it was paid. A catch-22. So that doctor changed me to Cimzia. It’s a weekly injection but I had been waiting two months for the prior authorization from her office to be returned to my insurance company. Luckily, I had a Humira refill so I was using that bi-weekly to get me through.
So the newer rheumy took x-rays when things got real bad and every year. She herself noted damage that we discussed in my wrists, esp. the right, and my ankles. We hadn’t discussed other x-rays. She noted osteoarthritis in my knees as well.
I have Reynaud’s, debilitating migraines, mental illness, as I mentioned before- asthma, kidney issues, and reflux disease with Barrett’s esophagus. Add fibromyalgia in the mix too. I was evaluated for Narcolepsy as well with catalepsy for sleep issues. All these effect me in individual ways and effect my AS. I asked the rheumy for an official diagnosis as she knew my old diagnosis.
She maintained a few times that I in fact did NOT have psoriatic arthritis, there was no evidence, and that if anything she could call me an AS patient. She felt I have ankylosing spondylitis, however; I’m HLA negative. My ANA has always been positive though. She hesitated at first when I asked her. I think she thought I was asking her a trick question. I don’t think she really knew what I had been going through and how important a true 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. (I can’t go some places now without my wheelchair or my cane and that’s not always easy.)
📌EDITED: I no longer need the wheelchair!! (2017) I have so many changes in my story from the last 6 or 7 years.
My condition of my spinal pain had deteriorated that much. I didn’t know the actual condition of my joints but she wrote a prescription for my wheelchair. She understood I couldn’t walk long distances anymore. I couldn’t walk hills or run. I couldn’t walk more than so many feet.
As of current dating 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 helped back then. If I drove anywhere alone, I had to try to lug that wheelchair out of the back of my SUV. Did I have the money for a trailer on the back? No- because we just didn’t have the money and I had to live with that. I had a standard wheelchair because I had no trailer for a power chair. (I qualified for a power chair but didn’t have the money required and the insurance didn’t cover that.) I’m grateful my arms still work. I never in my life thought I would be where I was. A young age with a teenage daughter, in a fresh marriage, and even though some days were hard I was able to 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’m not alone and that makes me feel that much stronger in my fight.
📍-Written originally for The Faces of Ankylosing Spondylitis.-
⚠️Please look out soon for my update on my life with Ankylosing Spondylitis. It’s been edited above to reflect changes from present to past tense. It’s now August of 2017. I’m remarried, my daughter has grown up, so much has happened and though I have more diagnoses; I’m not using that wheelchair!
I’ve rebuilt my life in multiple ways in an entirely different section of the country and soon I should be leaving the country.
If you have followed the past several years you will already know some things I’m adding. ⚠️
See you back soon! 👀 👋🏻