I said the other day that what I wanted for Christmas was hope for treatment and a doctor who knows about this dreadful disease, Well, I was driving along in my car a couple of days ago minding my own business when I received a phone call from a University medical center that told me they had received a referral from my primary care physician for me to be seen by a Multi-system Sarcoidosis specialist. I almost dropped the phone. After all I had just been to my primary care doc a few days prior when we had discussed her possibly researching for a specialist but I honestly didn't expect any results this soon. It will be quite a distance for me to go, in another state, but well worth the drive since this specialist deals with every aspect of Sarcoidosis. I have my appointment so this is a nice pleasant Christmas present for me.... a possible hope for the proper treatment ... or at least a step in the right direction.
Sunday, December 18, 2011
I was doing some thinking this week after someone asked me what it was that I wanted for Christmas. I really don't want anything that money can buy this year. What I want more than anything is for my doctors to find some kind of medical treatments that will actually work on this terrible disease that is rapidly changing my body. I have been sick for a long while however the past year has really taken a toll. The last few months there have been some major changes as well. For one, my hair is beginning to fall out and I am starting to shop for a wig... something I never thought I would need to do. My eyes are now being affected by the Sarcoidosis as well with burning and itching and blurred vision constantly in spite of new glasses. My legs have had a lot more numbness and weakness and it makes me wonder if I will lose the ability to use them at some point. I now have the skin involvement that comes with this disease... not as traumatic as some, but weird purple dots all over are not normal everyday buddies that you welcome. My headaches have become an everyday occurrence and on a day that I do not happen to have a migraine I am indeed a happy camper. The frustrating thing to me is sitting in my doctor's office and hearing that he or she is baffled as to how to treat me. I am not alone. There are many people with this dreadful disease all over the world in the same dilemma. Tons of multi system symptoms and very few Sarcoidosis specialists. Yes, there are Pulmonologists who deal with Sarcoidosis of the lungs.... however, for quite a number of us who are dealing with more than just the lungs, it is complex and we need specialists who know how Sarcoidosis affects each organ. So, this Christmas as I sit here... I wish for treatment... I wish for more research... I wish for the medical profession to train for this specialty. I wish for all of my Sarcoidosis friends to not give up... it is easy to feel like it at times. One day at a time is all we have. Cherish each day and the ones you love, and keep hoping for treatment that works.