Finally a name to go with what I have..

My story began almost 42 yrs ago before I even knew I had an autoimmune disorder. When I was a child I had episodes of unexplained fever, joints hurting and stomach problems. These were all wrote off as viruses or growing pains. Fast forward to 1993, I started having these strange symptoms again, fevers that would last a few hours and go away, joint pain, stomach issues and now throw in white blood counts that ran in the 60,000 range (normal is 3,000 to 10,000, different labs vary these parameters slightly). I was sent to a Oncologist, with the thinking that I had Leukemia or Lymphoma. This lasted a couple of months and went away, I felt fine and doctors again wrote it off as some type of virus. At this point I was beginning to think that maybe I was crazy and it was all in my head, but one doctor told me blood test don’t lie, we just don’t know what you have. Fast forward to 2006, here we go again, but symptoms were worsening and nobody knew why. At the time didn’t know what I had and my organs started failing, my stomach and part of my small intestines quit working, so I had to have them removed. I had trouble off and on until 2008 when my unknown illness hit me like a ton of bricks and wasn’t going to stop this time. I had gotten so bad that I had to take a leave of absence from my job as a nursing supervisor. I was in pain, daily high fevers spiking to 103, high white blood cell counts, and now the other new addition of a weird rash every time my fever got above 102. I was getting desperate, I could not function like this and I was referred to a Oncologist again who dug a little deeper than anyone had before. We tried 6 weeks of antibiotics to bring the white counts down, bone marrow aspirations, you name it we did it. All that came from this was that I was severely iron deficient and had no iron stores in my bone marrow. But, this was not the answer. Finally a twist of fate, a primary care doctor that I had worked for went to a conference on Rheumatoid arthritis, JIRA, and Systemic Juvenile Idiopathic Rheumatoid Arthritis. She was taking notes and started thinking of me, she started writing my name down beside every symptom for the disease they were talking about, she was so excited she called me at home and said I know what you have and what to do about it. That phone call changed the rest of my life, I would finally have a name to put with what was going on with me. It had taken 42 yrs for all the symptoms to manifest themselves at the same time. I was sent to a wonderful Rheumatologist who knew what I had and actually had only one other patient she had ever treated with it. I was diagnosed with Adult Onset Still’s Disease, its a form a Systemic Juvenile Idiopathic Rheumatoid Arthritis that only occurs in adults and is very rare. With this type of Rheumatoid arthritis a big part of it is that it also attacks your organs as well as your joints. Unfortunately, Still’s disease is very hard to treat because it does not act like other Rheumatoid arthritis’, but at least I have a name. I had to resign and take disability from my job because my immune system is shot and being a nurse does not go very well with a disease that leaves your immune system vulnerable. I have gone back to college online and in 2011 graduated with a PhD in Criminology, I refuse to give up, just have to change my direction and fight. In 2012 I had to have more surgery for my small bowel being blocked and then after taking a great Biologic that was working, my small bowel ruptured. Waking up two weeks later to find out what actually had happened to me, I was put into an induced coma so my body could try and heal with an abdomen that had been left open to heal from the inside out. I still kept fighting, I had too, I wanted to see my first grandchild. My family had put ultrasound pictures of my now sweet little grandson on the walls of my hospital room. So, now I am on Prednisone and Methotrexate and am not able to take any other Biologics to treat the disease they pretty much have the same side effects. My Rheumatologist said we are to the point of treating symptoms to keep you comfortable. For those who read this, please never ever give up, whether it’s because you can’t take it anymore or you are frustrated that no one knows what you have. It’s not all in your head and eventually someone will figure it out. I am now 49 yrs old and I fight everyday to at least have something good come out of every day. Yes, there are days that put me down and all I want to do is sleep but I have other days that I can manage to do things I use too. I just have to chose what I want to spend my spoons (from the Spoon Theory) on that day. Thanks for letting me share my story.

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Comments

View Comments (3)
  • Abardsley14
    4 years ago

    Thank you for sharing, Jackie. I have AOSD as well. My RA, 10 years after being diagnosed, decided to “act up” and thank goodness that I have an amazing Rheumy here in El Paso, that had seen this before. She did all the tests and ruled everything out, to eventually deliver me my verdict. I am blessed to have her and know what this ugly thing is. I was diagnosed two years ago and I just turned 39 last month. I am currently , and have been for a year and a half now, on Ilaris. It’s been the best so far. However, I have frequent upper respiratory infections and runny nose , runny beyond runny, and I cough a lot. Coughing with mucous. I have days that I just don’t want to get out of bed. Like today. But…104 temp or the alternative?!?!? I’ll take the lesser of the two. Many blessings to you, my fellow dragon slayer!!!!!

  • isuo15
    4 years ago

    Wow.. Of all the stories I have read ( and as I’m sure you know, it’s a lot) I’ve never been so compelled to comment …. GOD BLESS YOU. No one should have to endure a life that you have and you are so positive. God has a special plan for you … I’m happy you at least have a name for everything you have endured. Your story will forever stay with me and help me stay positive. Thank you for sharing. I found this site and stories at a time it is needed most.

  • Jackie Reed author
    4 years ago

    Thank you for your kind words. I indeed have a tremendous amount of faith and have to stay positive. Even if I just help one person who reads my story then that was God’s plan. We all have good and bad days, but I had one of my doctors tell me that if you find just one thing that was good that day, no matter how small it may be, then you are on your way to making the next day even better. We use to laugh about the things I got excited about after my 2 weeks in a coma, one day the doctor came in and said “What was good about today, I replied, I brushed my teeth today.” I can laugh today, but that was important that day, the next day I may have sat up in bed for 5 minutes, but it was something good that happened that day. I encourage you to keep that positive attitude and find something good in everyday no matter how bad you may feel. I also found that keeping a journal that I write in everyday has also helped tremendously, there is something about writing down how you feel and recording events that I now find quite soothing. Thanks again.

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