Friends of Althea

This is for Althea and here is her story:

You may never really understand the term “Life comes at you fast” unless you truly experience it. Just a few short months ago I was a perfectly healthy business owner and collegiate basketball referee. I had decided to take the basketball season off due to family reasons and soon after began to experience extreme muscle soreness and joint pain out of nowhere. Blood tests came up negative for autoimmune diseases after a positive ANA test. The muscle soreness and joint pain was so bad I had to sleep sitting up on my recliner. I then started to have issues with swallowing and ended up losing 23 pounds in 3 weeks. I also started experiencing extreme fatigue that made it difficult to walk even short distances and go up and down stairs. I took myself to the Cleveland Clinic emergency and they checked my bloodwork and noted my extremely elevated liver enzymes, but nobody could tell me what was going on. I was sent home with orders to get bloodwork taken every week for the next 4 weeks. The second week of going to get bloodwork I literally laid on my sister’s back to make it down the stairs to get to the appointment. After the bloodwork was taken I told her I would not make it back up the stairs at home and she took me back to the Cleveland Clinic emergency, where I was admitted on October 31st, and I have not been home since then. While I was hospitalized, I lost my ability to walk for awhile , which was terrifying and devastating. The doctors could not tell me what I had and so I was just getting my vitals checked and getting fluids and pain meds pumped into me the first few days as they waited for the results of my muscle biopsy. Once they received the results they still were not conclusive except that they were sure that it was a necrotizing myopathy. This meant that my body was attacking and killing my muscles. Once they figured that out they were able to start treating my condition based upon the standards they use to treat myositis cases. My swallowing issues worsened in the hospital and I had to have a PEG tube installed in my stomach in order to receive nutrition. I was eventually stable enough to be transferred to a rehabilitation facility, but due to the fact that I was still not walking and infusions were part of my treatment, I was not eligible for the acute rehabilitation facility yet. I also received a more conclusive diagnosis of SRP Myositis, which is a rare autoimmune disease that is one of the most disabling and is characterized by poor muscle recovery even with treatment. I spent several weeks at the first rehabilitation facility and was able to build up enough strength to get back on my feet and use a walker to move short distances. You can’t imagine how happy I was! I was then able to move to the acute rehabilitation facility to work on increasing mobility and strength. I am not able to go home because I am unable to make it up

the stairs and completely care for myself without assistance. I still have my PEG tube and have to sleep sitting up in a motorized hospital bed until I can get rid of the tube. I have been told that it is a slow process to build up my strength and have been given no guarantees that I will return back to “normal” by my doctors due to the seriousness of this disease. While I have health insurance, through this experience I have learned that it does not cover everything that I assumed it covered and that there are a lot of additional expenses that come when you least expect it. I am soooooo grateful for for all of the love and support that I have received from my family and friends. It has really kept me positive and motivated through these tough times. I am continuing to work hard and take care of the things that are in my control because if anyone is going to beat this thing, it’s gonna be me! Through all of this I count each day as a blessing because things could have been worse! Thank you for reading my story! Althea