I have no desire to be complainer when it comes to my health or any other issue. I’m generally a positive person and I’m thankful for all the blessings I enjoy.
Having said that, I have a relatively rare disease called sarcoidosis. Many people have not heard of it or are vaguely familiar with it from an old episode of House.
Since I have gotten to know a number of people in the sarcoidosis community, who also are surrounded by people unaware of this disease, I feel compelled to share my story.
I was diagnosed with sarcoidosis almost four years ago (actually my biopsy which revealed the sarcoidosis was done four years ago tomorrow). Many people with sarcoidosis go into remission without treatment or after an initial prednisone treatment. Many never experience symptoms and the sarcoidosis is discovered only after a routine x-ray.
None of that is my experience. While my health is good enough to work full-time and I get to do most of what I enjoy doing, I have flareups on a regular basis.
I recently got a new respirologist (although sarcoidosis is not exactly a lung disease, it is often treated by a respirologist) who takes my symptoms seriously.
Since there are some concerns, he increased my prednisone from 7.5 mg per day to 40 mg. Prednisone is not the funnest thing for anyone but I have an added complication. I was borderline diabetic before being on prednisone. The last time I was put on a high dose of prednisone, the diabetes kicked in full-power, putting my blood sugar in the 30s.
At least this time there were no surprises. I knew that my blood sugar, which since being on the low dose of prednisone went down to borderline again, would shoot up again.
That is indeed what has happened, although not up into the 30s again. Thanks to diet and exercise, I keep my blood sugar around 10-15. It is supposed to be less than 6.9, but this is the best I can do.
The bad news is that prednisone increases appetite and food raises blood sugar. The good news is that although prednisone usually is accompanied by weight gain, because of the diabetes, I have dropped six pounds in my first two weeks of being on it.
My hope is to be on this level of prednisone for only a few more weeks and then go on a different medication. I would prefer not go back on pills and insulin for the diabetes.
I share all this to say that all of us, including myself, should be thankful for the health we have. Enjoy each day you have and make the best of the time and energy you have.
I blog on sarcoidosis at The Mighty. You can find my posts here.