I walk into the Rheumatologist office to find out my results and hear him say most of your labs were fine that pertain to autoimmune disease but you had one show up positive. The HLA-B27 antigen was positive which is most likely why you have had so much trouble. This antigen is responsible for the condition of spondyloarthritis but most devastating is the Ankylosing Spondylitis. Dr. Bell thought that I was struggling with the condition leading to AS and said no matter what we treat them the same and treat you like you have AS. So, I want to start you immediately on some medications to help control the pain.
I was speechless. Someone took the time to not only believe me but had figured it out. Someone that understood autoimmunity had figured out my almost 2 1/2 year struggle. Thank you Lord for placing this man in my life and for his wisdom to discern the problem. I took things very lightly that day and was actually pleased to finally have some answers to my all over pain and joint problems.
Until…the next day. I went to my son’s lacrosse game. It was chilly out and I bundled up. I wanted to be there after missing so many because it was in our town. My wonderful lacrosse friends, that have become family, asked how I had been doing. My response was nothing but tears. I began to explain the condition and how it can be disabling. I cried for what was. I cried for the fact it isn’t curable only treatable. I cried thinking I may never be able to do things I enjoy as I age with this disease.
They comforted me but understood it was all new and the unknown is scary. As I engaged my thoughts back to the game I began to lose this sadness and realize the more you think and dwell on it the more depressed you will become. I was already medicated for depression and felt so much better mentally. Along with my wonderful counselor who helped me to see me past the pain and changes.
I began my treatment of Celebrex and Rayos. Rayos being an extended release steroid (Prednisone). Rayos would have been $2,200 a month out of pocket but my doctor helped me by referring it to a specialty pharmacy where I get it for $10! Thank goodness. We would have lost it all paying that for one medicine. They seemed to help a lot at first and within a month I was outside doing things I hadn’t in 2 years. I was attending sporting events, grocery shopping, back to church more regularly, and I had some pep in my step.
I still was having flare ups and was not even 75% better though. So, he added in Sulfasalazine. This is a DMARD that they use to treat Rheumatoid Arthritis as well as AS. After 3 months of taking that I found that it didn’t do anything for me. So, we moved on to Methotrexate. For those of you who have heard of this yo u may assoicate this with chemo therapy. It is a chemo therapy drug that they give to cancer patients at much higher doses but for us with autoimmune arthritis it is a low dose, once a week jolt to the immune system to calm it down.
All of the things I take have helped or I wouldn’t stay on them. I have found between the meds and my steroid injections to my head and neck as well as SI joints have kept me moving.
I decided this summer after being denied disability that I was tired of fighting. Fighting pain, fighting doctors, fighting to just get up and move everyday. So, I gave that up and prayed for what was next.
I found a job in healthcare recruiting and was able to start immediately. It was so quick I didn’t even think about what I was doing jumping in from being on a couch just a few months before ALL DAY to a full-time job. I have done well so far with my health but it has its obstacles working. I have days my coworkers see me with an ice pack strapped with a velcro strap around my neck while I work because my neck pain gets out of control. I had to have the laptop boosted up so I could be more ergonomic due to my neck problems. A great friend brought one in that I could use. It is the little things that are hard. For example, if I drop something to bend down and pick it up is very difficult for me. I get migraines often from the flourescent lights and computer screens. But, I press on.
If I don’t push through depression the “I can’t’s” creep up. It is a battle daily to get out of bed, go to work, and continue to be active until my head hits the pillow. But, I know with God ALL things are possible. I had almost given up when I went to Dr. Bell. I was weeping in the initial visit just telling him the journey thus far. It was so hard to just express the pain and the agony of knowing you hurt but not knowing why!
Fast forward to today. I am waiting until December 16th before I can try for approval of Humira. Otherwise it is $1,800 a shot and I need 2 shots a month. No thanks for that! I have to be on Methotrexate for 3 FULL months before adding in Humira. Again, Humira could be a great answer for me (especially with this stiffness from the extreme cold). It however, can cause a decrease in your immune system like Methotrexate and Rayos do. Therefore, I have to be ever so careful so I don’t get sick. I have caught EVERYTHING that has come around me so far. But, I keep picking back up and carrying the torch. The torch of “I can’s”. The torch that carries the light I needed in my life when this all started. This is the torch I want to pass on.
In reading this blog it is my goal to not only open up a private chapter in my life but to allow others suffering the ability to read that they are not alone. You are NOT crazy. Your pain is real. Don’t give up and don’t give in or get in your own way. Trust that there is answer just one office door away. It may take a lot of doors to open to find that right one but you WILL! I will continue to post through my journey with this disease and allow you a very raw perspective. I have felt called to share this and be brave enough to tell ALL! Any questions you have or thoughts as you read this feel free to comment or ask. I want this to be for others to learn and grow as I have.