Hope For Treatment

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.

It Touches So Many....

This disease touches so many ... and of course for many of us who have Sarcoidosis, we knew we were sick way before our doctors even acknowledged that we had this. It is a very frustrating disease to have since the medical profession at this point is still researching and discovering ways to help us as we convey to them all of our many issues, and there are always new ones! Please watch this video... many of us with this disease participated in The Thanksgiving Project.

That Time Again

Wow.. this month flew by so fast for me. My doctor visits are now one month apart and today I am due for another. I do not look forward to it as I was supposed to call or go to the Emergency Room in the case that my every day chronic pain decided to increase in intensity and it has but I just have had too much to do if you know what I mean. I do not want to spend my time waiting around an emergency department especially one in which the people on staff pretty much have no clue as to what Sarcoidosis is. They seem to think it is only in the lungs when I know from the way my whole entire body is responding that it is a system wide disease! Oh well I won't start my rantings and ravings about the lack of research and the antiquated literature out there floating around. I hope my afternoon is not a total waste of time as I sit once again in a clinic and try to explain my pain and explain that "no" I do not "feel" any better in spite of what their books tell them I should be feeling on the Prednisone.