...because its usually her telling me about her doctor visits.
For 12 years my father lived with a rare disease called Sarcoidosis (lung disease) which caused, in late 2003, Pulmonary Hypertension...he was taken from me in February of 2004.
Today my mother called to say that she got results from testing that was done on her a month or so ago (biopsy). The doctor feels she may have Intersticial Lung Fibrosis & Sarcoidosis. On top of her lupus she also definately has Fibromyalgia and some other disease that is causing her mouth and eyes to be dry...but she couldn't remember the name for that one. I'm sure once the word 'sarcoidosis' came out of the doctor's mouth she completely shut down...as I did when I heard her say it. I think my heart actually stopped for a moment.
When my father was diagnosed with it the doctor he was working with told him that there were only 5 known cases of Sarcoidosis. For now I'm hanging onto the fact that it is still a rare disease and it is highly unlikely that both of my parents would suffer from the same disease. Frankly I have to hang onto that right now...or I will not get out of the bed for days.
I've decided to devote the next few days, or however long it takes, to tell you more about my parents...and hopefully try to explain exactly how I feel right now.
For those that pray, please pray for my mother. They did more tests yesterday to determine whether or not she has the fibrosis/sarcoidosis...and she is scared, but trying to have faith that it was a fluke and the doctor is wrong.
She will have a physical therapist coming to the house soon to teach her things she can do at home. The result of the biopsy showed that the damaged nerves in her thigh is 'eating' away the muscle...a result of the fibromyalgia. Eventually they will have to put her back on steroids (why this is bad will be in the post tomorrow).
4 years ago