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.

Is It REALLY That Bad?

I have been quite amused as I have watched people's reactions whenever I have told them I have Sarcoidosis. Most people have never even heard of this dreadful disease and the minority that have are still pretty ignorant concerning the facts. The fact of the matter is.... if you are like me and actually have this, then you know that you feel lousy ninety percent of your time! Yes, I get up get dressed and try to smile and get out of the house and try to function normally but for the most part it is a major struggle! There are more days than not that I would just like to stay in bed but fear if I do I would never get out. Most of us with this autoimmune disease have other health issues as well. For me it isn't simple.... I am struggling with Fibromyalgia, Migraines, Lymph node and Lung Sarcoidosis, Osteoporosis, Degenerative Discs in my neck, and on and on the list is growing! I am now taking seven prescriptions for all of these different problems. The last few weeks my liver and pancreas enzymes have been a bit elevated so probably due to my meds but who really knows? I say all of this to say that yes... Sarcoidosis needs to be added to Social Security's list of disabling diseases! If you could not go to work with the flu every day then don't expect us with this disease to either! Pretty much this disease along with the side effects of all of the meds and the Fibromyalgia thrown in there with it makes you feel that way. Some days are easier to fake than others and people look at us as if we are fine,but overall, Sarcoidosis and Fibromyalgia together are NOT a welcomed combination.