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.

Ongoing Sarc Saga

It's an ongoing Sarc Saga! I apologize for not keeping up on my writing lately, but my meds have really been kicking my rear! My lungs seem to be breathing a bit easier, but of course I feel like garbage in spite of that, due to the other issues I guess with my liver, pancreas, lymph nodes, and not to mention aches and pains of the ongoing day to day problems with the Fibromyalgia. I am struggling this past week with my emotions being all over the place and find it very hard to be around anyone. People don't understand if you are emotional of course. They automatically just think you are depressed or crazy or whatever they want to think, I guess; but the fact of the matter is, that prednisone really does mess with your emotions, and as you taper it down you experience some withdrawal symptoms. It seems to be improving as it gets lower, thankfully, and I will be glad to be down to the lowest possible dosage for maintenance. I really would like to not take any meds at all but at this point that seems a bit impractical. The only down side of tapering off the prednisone is that the joint and muscle pain returns with a vengeance. One more day, one more week, but I am still here and for that I am thankful and I will continue to do what I can, where I can, when I can.

Week SIX...NEED A FIX

Here I am ... week six of the Prednisone and I have had two doc visits this week to evaluate how I am doing on this treatment for the Sarcoidosis in my lung and lymph nodes. As for the rest of my bod... who really knows what is going on? Anyway, I had a pulmonary function test and this actually was the best one I have had so far since April, and believe me... I have had plenty of them which ..I am not fond of. Anyway.. the Prednisone must be doing it's job since my lungs are clear for now and the coughing has pretty much slowed down, but of course I am no longer in the house that was built in 1912! I suppose that in itself has a bit to do with it. Lab work was done and the down side is that now that my lung is doing somewhat better, my liver and pancreas are actually worse than they were. Whether this is due to the meds or just due to my illness is another matter of research for the docs I guess, and as far as they are concerned I am going to be a constant visitor in their offices at least once a month for each specialist, if not more frequent than that. In the meantime, in order for me to start sleeping at night, my dosage has been changed and rearranged so now I need to readjust myself to this new arrangement of drug induced stupor for this week!