About Me

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I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.

Thursday, March 8, 2012

My colors are blush and bashful...

I was admitted to the hospital in the beginning of February and I was in for about 14 days. I was on IV antibiotic and met with quite a few doctors. I saw a neurologist, a neurogeneticist, 3 rheumatologists, nutritionist, opthamologist, geneticist, physio and occupational therapy (and of course my CF doc). I had a chest X- ray, MRI, swallow study, an ECHO, abdominal ultrasound, EMG/NCV, an eye full exam, and a q sweat. (Not to mention a ton of blood work.) So some of the tests came back 'off'. They are trying to fit me into a study to help with the pain, but I'm trying not to get my hopes up. Having a unique mitochondrial mutation leaves the doctors unsure of how to treat me; which means I'm just stuck in limbo waiting for someone to figure me out. So I suppose we will see what happens. On a positive note I went in with a 67% lung function and came out with 77%...

I woke up Monday with a stuffy nose, sore throat and chest congestion. I was hoping it was allergies, but that was just wishful thinking! I am still sick and I feel worse than I felt on Monday. So I put in a call to my doctor to let her know 17 days out of the hospital...and I'm sick. AGAIN. The last time this happened was in October and it lasted until this hospital visit. I'm frustrated, but not as frustrated as my husband. Sometimes I consider lying and telling him I feel fine...but then I realize that I need his support. I just wish he had more support. Sometimes I'm not sure his family understands his stress level (b/c of me), hell I'm not even sure he tells his friends. But Frank is a worrier, and to quote a line from Steel Magnolia's- "I never worry 'cause I always know you're worried enough for the both of us". That's Frank...worried enough for the both of us.

Anyhow...my family is going through some turmoil right now, nothing that I feel comfortable posting details about online. A few of my friends are sick right now too. I wish I could do something. For my family and friends; but physically...I just can't. At least not right now, hopefully if I get a new diagnosis from NIH that I'll get my energy and muscle control back, not to mention get rid of this constant ache.

We bought a ton of Girl Scout cookies so far, in an effort to show support. I'm sure I will have an extra butt cheek to show support at the end of this cookie sale! As for my daughter? She's made Honor Roll with Distinction; I am so proud of her. She is doing well, still cooking and loving it! If there is one thing in this world that I did right, it was raising Kate. It is the most important job in my life, and the thing I'm most proud of (being a Mom).