Pneumonia and Muscular Dystrophy

I’ve been a pretty-much absentee Doper since I retired back in 2003. You’d think it would be the opposite, but The SDMB got me through a lot of long work days, and when I retired I found other internet interests. I’ve kept in touch with many of you through LiveJournal and FaceBook, though.

The last few years have been very hard. My sister and I inherited facioscapulohumeral muscular dystrophy from our father. I left my job in '03 at age 29 as it was harder for me to breathe and pull my own weight. In July 2008 I aspirated some ice tea and found myself in ICU needing a tracheotomy. My pulmonologist had been pushing me for years to consider it, and then it was do or die time.

Earlier this year, my mom died of kidney failure. Shortly after, I was diagnosed with strep pneumonia. For almost 5 months I’ve fought it, going through three rounds of antibiotics to no avail. It’s colonized. I also have a colonized staph infection in my lungs. Lord knows what else has colonized. Sometimes, there’s so much pain and blood, I don’t know how much longer I can go on.

I think I’m dying. I don’t want to die, but I’m tired of suffering. I don’t know what I’m supposed to do. I just found Shirley Ujest’s thread on the passing of her last brother, and all I see is my future, and it is very bleak and frightening.

My heart is breaking for you; I can’t imagine going through the struggles you’ve endured. I hope someone will be along soon with words of encouragement and wisdom. Until then, know someone read every word of your post and is thinking of you. ((((Gr8Kat)))).

It must be horrible what you’re going through. What are you supposed to do? Take each day as it comes, is the best I can offer you. Talking to your sister might be helpful for you both.

I’m so sorry about your mom. You’ve really had far more than your share of sorrow.

You can post on the Dope some more. Sometimes writing helps a hurting heart.

I hope to see more of your posts soon. ((((Gr8Kat))))