Saturday, December 19, 2009

The past year...

June 28, 2008 will go down in history as one of the best days of my life. It was the day I married my best friend and the most amazing man in the world. All of the hard planning and details fell into place. For a June wedding, we couldn't of asked for more perfect weather. 80 degrees and sunny. I can honestly say that we had the perfect wedding... On June 30, 2008, Chris and I ventured out for our honeymoon. We drove the 6 hours to WI, where we started a glorious honeymoon in the middle of no where. It was perfect- secluded and romantic. Just what we needed after the hecticness. July 1, 2008, was the day I woke up with my first fever... I had been having a lot of knee and shin pain for the past few weeks, but I chalked it up to shin splints since I had been working out. Needless to say, although our honeymoon was relaxing and enjoyable, I didn't feel well the entire time. I figured... hey it's probably exhaustion from the wedding. Chris and I came home, and after two weeks I was still having fevers and such, I decided to go to a walk-in clinic. They took a chest x-ray due to the coughing I had been having and told me that it looked like I had bronchitis. Gave me a perscription and sent me on my way. I figured, alright, great... I'll get the antibiodic in my system and be on my way to getting better and won't have to deal with doctors for awhile. Needless to say, this is where the journey really started to get interesting. After a week on the antibiodic, I was still having fevers, coughing, and then one Saturday I wake up to my legs swollen. Imagine seeing no definition from your knees down to your feet. Fairly scared, my husband took me back to the same walk-in clinic that we went to before. He pretty much said, well it's definately not bronchitis. Now started the tests... For the next three weeks I was in and out of the primary care doctor's office... I think I was tested for everything you could imagine. I believe that I was tested for lymes disease a total of 6 times... they were certain that was what was going on. Until one day, I came in and told the doctor how my fingers turned blue at work. He looked straight at me and said I'm sending you to a rheumatologist. I looked at him and said a rheuma a who? This is where life changed for me and my husband. At 23 years old, I was very niaeve to think that anything could seriously be wrong. September 1, 2008 reality began to set in. My blood work came back stating that I was anti-jo 1 positive. Dr. Fontana, the rheumatologist, stated that I had an autoimmune disease called antisynthetase syndrome. The disease consisted of five symptoms: interestial lung disease, raynauds phenomenon, arthritis, mechanics hands, and polymyositis/dermatoymyositis. I had all of the symptoms except the mechanics hands. She explained to me that the disease was chronic, but we could control it. The doctor was very straight forward with the realization that I would have to change some things in my life but she gave me optimism that once we controlled my disease I would be able to live a normal life, but I would be on medication for the rest of my life. With that, although in shock, I was then sent to the pharmacy where I started 40 mg. of prednisone and an immunesuppressant called CellCept. This started the year of medication. From CellCept to tacrolimus, up and down on prednisone, my life seemed consumed by visiting the pharmacy and going to the doctor. From Thanksgiving to May I averaged a temperature of 100-101 degrees. Needless to say by February I was no longer able to work. This was one of the hardest decisions I had to make. Although I knew I couldn't physically work, I still felt like I was letting down my work place and my husband. It was a hard decision to come to terms with, but the best one I made. I began to taper prednisone in May. By July I was down to 7.5 mg. of prednisone. But I felt terrible. I could barely walk every morning. My wonderful husband had to practically carry me to the bathroom before he left for work. Many days I woke up feeling like this was never going to end. I pretty much slept the entire day. I am fortunate to have an amazing cat that kept me company during these lonely times of only being able to lay in bed and watch tv. I've definately become an expert in TV shows... who knew there were so many reality shows out there. In August I went to my doctor and she told me that my disease numbers were back up. Pretty much none of the medicine was working. She talked with a doctor from Mayo Clinic who recommended adding the drug Rituxin. I said great, sign me up... well it wasn't that easy. First, I had to get a bronchoscopy, as my pulmonologist was concerned about a lung infection. Although the procedure sounded scary i.e. tube down your throat to flush out your lungs, in the scheme of things it wasn't all too bad. The hospital was great and we were out of there by lunch time, where I went home and slept. It came back that I had a lung infection so I wasn't allowed to start the rituxin for a couple of weeks, in that time I had to get approved by a foundation to pay for the drug. The drug would be administered in two 6 hour IV's and each one cost $20,000... yes I said $20,000. it's hard to believe that a little pouch of liquid could cost that much but it did. In the end we got approved and started the IV treatment at the beginning of October. The process was pretty harmless and I was fortunate that Chris was able to be by my side, as it was quite boring. The first infustion went well, but the after effects were terrible. The lung infection, which we thought had cleared, hadn't so fevers and muscle pain started up again. They prescribed an antibiodic, of which I then had an allergic reaction to. With a 103' fever and in the middle of the H1N1 scare, we didn't know what to think. Luckily, at this point I'm becoming really good at reading my body and eliminating what I think is either my disease or an infection. I got a new drug that by the next day I felt 20 times better. The next week I was not having any fevers and was able to get the second infusion. This one went by with flying colors. It's now December and I just went to my doctor's appointment. I'd been having on and off fevers and my dermatoymyositis was still active- this is noticed by the red rashes that are present on my eyelids. So she continued me on 60 mg. of prednisone and added another immunesuppressant drug. I'm an "intersting" case in the medical field and puzzle her quite a bit. My muscle enzyme is down, but my white blood count is up to 31. Not what you want to hear before the holidays. So now it's off to another specialist, this time a hematologist. With my muscle disease, there is links between that and cancer, so she wants me to see a specialist to see if I need to get my bone marrow tested. Although scary, I've lots of these types of tests and conversations before, so I have the mentality to not be alarmed until necessary. I could probably post a novel regarding the past year, but my thoughts are to keep moving forward. I know God only give you what you can handle and I have been fortunate to have the most amazing husband by my side this entire time. I know someday I will look back on this experience I realize how it has made me a better person and a stronger. I'm anxious for this Christmas season, as last year, Chris and I were not able to celebrate the season to the fullest. At least this year, I am not having constant fevers and due to the high amounts of medication (averaging only 26 pills a day), I am more comfortable. I'm looking forward to relaxing with the ones of love. Which I think I will do right now, as my husband just walked in the door with dinner. Bye for now.

1 comment:

  1. Hi. I also have anti-jo1 antibody syndrome (an earlier name for antisynthetase syndrome). I've had it for 20 years this month. I'm still alive, but it's uncontrolled. I'm so sorry that someone as young as you have such a thing. I hope your husband will continue to be supportive. Mine wasn't. I guess the "in sickness and in health.." just meant "in health" to him. What a looser, huh? I feel very lucky to have my kids with me, but it has been challenging for them as they have had only 1 seriously ill parent to raise them. They have turned out great, however, and I adore them. I wish you all the best. It will be difficult, especially because even your rheumatologist, your main caregiver, will not know much about your illness, as it is not well understood. I'm currently taking Imuran and Tacrolimus to treat the arthritis and the Interstitial lung disease. Many adjustments are necessary when you can't breath very well. Good luck.


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