A Blessing in Disguise

I haven’t posted a blog in over a month and decided it was time for an update. It was a very busy and long January. After my visit to Vanderbilt on December 20, the doctor more than doubled my dosage of Cellcept since I wasn’t improving. Initially, I seemed to be handling the drug okay, but that changed. I started having severe GI issues (i.e. severe diarrhea, some nausea, abdominal pain, loss of appetite) that has gone on for nearly three weeks and continued to get worse. (I also have issues with lightheadedness and increased joint/muscle pain.) Dr. Wilfong at Vanderbilt didn’t think it was the meds as she thought I would have started developing symptoms sooner. She recommended that I see my primary care doc, so I did. He ran many stool tests which included checking for various bacterial infections. All tests came back negative. My local rheumatologist suggested we lower the dosage by a small amount to see if that would help. And, low and behold, my symptoms improved a little. It was always my gut feeling (no pun intended) the Cellcept was causing these issues, but I wanted the opinion of my doctors to make sure. I know my own body and have to listen to it and realize the doctors can be wrong at times. I spoke to a pharmacist who stated that this drug can most definitely cause these issues. I also discussed this with members in my online myositis support groups who have had similar issues. You have to constantly do your own research and be your own advocate which can be exhausting, but necessary.

I made a trip back to Vanderbilt on January 26 to have some more testing done. The doctor ordered an MRI of my thighs to look for muscle damage, a CT Scan to look at my chest and lungs, and an echocardiogram to view my heart function. These are all areas which can be affected by dermatomyositis (DM). These were mostly baseline tests and to make sure this disease hasn’t progressed to these areas yet. Thankfully, they have not. I know others who aren’t so lucky. The fact that this disease was diagnosed fairly quickly plays a huge role in this. I have Kim Heathcotte my dermatology NP to thank for this. She is the one who ordered the initial skin biopsies and referred me to a local rheumatologist with this diagnosis last spring.

DM is a disease where you have to be aggressive up front to prevent it from advancing. So, this is why Cellcept is a necessary drug right now. It’s just a matter of finding the right meds and the right dosage to get me in remission and feeling better. This is done through trial and error and much patience. One risk of this disease is cancer so I have to have various cancer screenings yearly for the next three years, then the percentage goes down. I also found out recently that menopause may have played a major role in developing this disease. They are finding a connection with hormones, but more research needs to be done. There is always new information coming out and new treatments, so I am hopeful there may be more answers down the road.

I admit there are days I am ready to throw in the towel as I get so tired of not feeling well. Then, I receive hopeful news like the most recent tests showing no advancement. And, aside from a few numbers being out of whack from the Cellcept, my lab work looks excellent. Knowing we caught things early gives me the hope I need to keep fighting. That, and the fact that I know my healthy lifestyle has benefited me greatly. I believe things happen for a reason. I know I am exactly where I’m meant to be and that good things lie in wait for me. I know the mental and physical health benefits of optimism so I am hanging on to that as much as possible. 🙂

Dermatomyositis is a very up and down disease. In fact, there are more down days than up days right now, so I most definitely cherish the good ones. The weather warmed up over the weekend and the sun came out which did wonders for me. Even though I wasn’t feeling my best, I made it a point to get out and hike with Izzy. Knowing that nature and animals always improve my mental and physical health, I knew I couldn’t pass it up. I bought some new hiking poles to use particularly on rough and hilly terrain. Between that and Izzy at my side, I did fairly well. And, you know what? It felt damn good!

Someone in my online myositis support group described it perfectly, “We are like test subjects because there isn’t enough research on this disease. We must be our own advocate and do our own research to make sure we’re getting the proper treatment. Some days will feel unbearable and we may feel all alone, but we must stay positive and love ourselves anyway.” I have learned that despite all the challenges, the important thing is to remain strong and know things will get better. I have to look at this disease as a curse and a blessing. An Ivy Tech student told me recently I was an inspiration. While I may not feel very inspirational right now, I do see this as a blessing in disguise. I have faith that the true blessing in all of this will appear when I least expect it.