Finding Faith.....

I am trying to find my faith. I have always felt that I had a strong faith in God but lately it has been shaken to my core. It is only natural when you are facing something monumental that you ask "why me God". I feel ashamed every time that thought comes to mind. I know God did not promise us a life of rainbows and sunshine. I know that he did promise that he would be there for us and that he is only a prayer away. I know this with all my heart but yet I feel my faith wavering just a bit. All I can do is pray and have faith that people are praying for me.

In The Quiet Moments

Lately my world is full of quiet moments. Being home bound will have that affect on you. Most of the time I cherish the quiet but sometimes it is a vicious reminder of what this disease has done to my life. Will I ever get used to the fact that until 3 months ago, I was working, running around with friends and family and living life without any restrictions and now I am forced to be at home? Will I ever get used to the fact that just doing simple tasks like unloading the dishwasher can make me so tired that I need to lay down for an hour? I know that I have so much to be grateful for. I have the most incredible, devoted husband and 3 healthy, happy kids. I have to love and support of my extended family and friends. But in the quiet moments, I shed tears over what has been lost and the unknown road that lies a head. Lord, please give me strength and comfort during the quiet moments.

As I was in the kitchen watching the snow fall today, I can hardly believe that it has been 8 weeks since my initial hospitalization. Eight weeks ago my world as I knew it started to change and I had no control. The one lesson that I am learning through this disease process is that each day is a gift from our heavenly Father and you should make the most of it. I recall laying in the hospital bed,and having all these doctors look at me like I was some type of rare specimen and telling me that I have antisynthetase syndrome. One doctor exclaimed that they had never seen a patient with it and I was their first. It was almost like he was excited about this. They provided me some printed information that they had researched on the Internet. Most of it did not make sense to me, possibly because I was on heavy pain medication but one comment did. My prognosis was not good and I could possibly live 3-5 years the most with this. I layed in the hospital bed sobbing praying that they were wrong. The hardest thing was to call Doug who had to return to work that day. Being so far from him and having to tell him what was told to me was beyond difficult. All we could do was pray for strength and think of the kids.

In the last eight weeks, I think I have felt every emotion under the sun. It does not help that I am on major doses of steroids that cause extreme mood swings. Most of all, I have felt helpless and out of control. I need to continue to fight and try to stay positive. It helps that my family has been showed so much love and generosity from family members, friends and neighbors. The outpouring of love we have received has often left Doug and me speechless and so grateful. From the home delivered meals, food, money, cleaning services and gift cards, everything is so appreciated and helps us so much. I know now that there are angels out there looking out for us. Those angels and the power of prayer will help me in my daily fight with this disease and what will give me strength.

I have been requested to explain what Antisynthetase Syndrome is. I found this explanation on the National Institute of Health - Office of Rare Disease Research website.

Antisynthetase syndrome is a chronic autoimmune disease of unknown cause. It is a subgroup of the idiopathic (unknown cause) inflammatory muscle diseases and is characterized by myositis, interstitial lung disease, arthritis, and Raynaud's phenomenon.

What causes antisynthetase syndrome?
The cause of antisynthetase syndrome is unknown; however, the production of a group of autoantibodies (antibodies that attack normal cells instead of disease-causing agents) that recognize and attack certain enzymes in the body called 'aminoacyl-tRNA synthetases' appears to be linked to the cause of the syndrome. The amicoacyl-tRNA synthetases are a family of enzymes which play a vital role in protein synthesis in the body. The autoantibody more commonly associated with antisynthetase syndrome is anti-Jo-1. Their exact role in causation of antisynthetase syndrome is not yet known, but viruses have been implicated. The fact that the onset of symptoms of antisynthetase syndrome typically occur during winter provides indirect evidence that infectious agents may play a role.

The severity and type of lung involvement typically determines the outcome of the disease. I have been told that my prognosis is not the best as I already have lung involvement. I am choosing not to believe that and that I will get this disease in control.

Hope this definition helps. I will write more later.

So it is time to fill in the blanks. After reading my first two entries, I realized there is 5 months of missing information. In the first entry I talked about my symptoms and how I was getting worse day by day (from November 08 - February 09). At one point I thought I was truly losing my mind from the pain. The specialist kept telling me that I was not giving the medication (methotrexate) enough time to work. He assured me that the medication takes 12 weeks to work. On February 10th, I could not even get out of bed. My muscles were so weak and the pain was unbearable. I had tried to call around to get a 2nd opinion but no one would see me. My wonderful mom took over the phone calls and we were told to call the Nebraska Medical Center in Omaha as they were doing extensive research in the field of rheumatology. They had a cancellation and we could get to see a Dr. Erickson in 2 days! What a miracle!

My parents drove me to Omaha on 2/13/09 and we met with Dr. Erickson. After an extensive physical exam that left me sobbing in tears from the pain and extensive blood work and x-rays, we were sent home to wait for the results. Both my parents and I were impressed with Dr. Erickson's compassion and knowledge. The next day he called stating that the blood work was coming back very abnormal and that he was very concerned. He ordered me to go to my local clinic for more tests and that it could not wait. He also wanted me to come back to Omaha for more tests the following week including an MRI. Too make a long story short, the tests and a muscle biopsy showed that I have polymyositis.

Polymyositis (pol-e-mi-o-SI-tis) is an uncommon connective tissue disease. It's a type of inflammatory myopathy, which is characterized by muscle inflammation and weakness. The most noticeable characteristic of polymyositis is weakness of the skeletal muscles, which control movement. It most commonly affects the muscles in the trunk of the human body.

Dr Erickson started working with my original rheumatologist in the Cities and came up with a course of medication. I so wished that I could keep seeing Dr. Erickson but it was a 6 hour drive from Morgan. Within 2 weeks I started having breathing problems. Some tests were ordered which showed that the disease was attacking my lungs. It came to the point that I need oxygen for 6 weeks. After a rough couple of months, the medication started working By May, things had started to improve.

Hopefully this will connect my first 2 posts. Have a great day!

the latest

Ok...I have become one of those annoying people that starts a blog and that does not update it. It has literally been 5 months since I started this journal and I am now just adding my 2nd entry. I will try to do this blog justice by updating more often.

What a difference five months makes. When I started this blog, I was diagnosed with polymyositis, ra, lupus(not 100% sure) among other things. The medication was controlling my symptoms and I was actually feeling better. The only thing I noticed was that I was having a hard time working 40 hours a week. I would come home so exhausted that I could only retreat to my bed. I could not care for the kids or my house. By the end of June, I had to quit my Girl Scout trainer job and had found employment with an adoption agency. It was a 20 hour job, based out of my home. I would be doing my life-long dream of being an adoption social worker. Life was good.

As far as my health, I was finally off the dreaded drug prednizone by the end of June. I will dedicate a whole entry to the evils of prednizone in the future. Within 10 days of my last prednizone, all my symptoms had returned. I was in touch with the specialists and my blood work indicated that my inflammation rate was increasing. They put me back on prednizone and eventually increased my other meds. From mid July until mid August, I felt my body getting worse and worse. Finally the morning of August 13, 2009 my body gave out. I was running a temp of 103, I could not get out of bed without screaming in pain and when I finally got to the clinic, my blood pressure was 80/40. I was hospitalized for 4 days without being certain why I was so ill.

Once I stabilized, I was released. Two days later, Doug took me to Dr. Erickson in Omaha. He was the one that diagnosed me with polymyositis. I will have to dedicate a blog entry to him in the future as he is one of most compassionate Drs I have ever met. He spent 10 minutes evaluating me and then promptly put me in the hospital in Omaha. For the next week, I was put through a gamete of medical tests and procedures. Within 48 hours they were narrowing in on a diagnosis of antisynthetase syndrome. Within 48 hours I felt my world crashing down around me. More later......