Interstitial Lung Disease Community Group

Interstitial (in-tur-STISH-ul) lung disease actually describes a group of disorders, most of which cause progressive scarring of lung tissue. This eventually affects your ability to breathe and get enough oxygen into your bloodstream. Beyond this, the disorders vary greatly (mayoclinic.com).

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Lungs & Respiration
/ Interstitial Lung Disease Support Group

Helloooo is anyone out there?

Group Founderkelli1b
kelli1b
I haven't posted on here in awhile but have been thinking about you all and wondering how you are doing? Me, I seem to still be stable which is all I can hope for right? I must admit, I got really scared yesterday. During my shower, I lost a lot of hair. By itself not so scary, but on the back of me working and coming home and laying on the couch until bed totally exhausted every day for like, no reason? Pretty scary as both other times I got really really sick thats how it started: exhaustion, hair falling out, big ol rash on my arm, increase in pain and memory issues. Positive thoughts but hate to revisit a flare. Hoping you all are well :)
tinaunger50
tinaunger50
praying for you and really wishing by this time you are doing better!! HUGS
tinaunger50
tinaunger50
Kelli, Im really struggling with this prednisone still. Im down to 20 mgs but It feels just as bad as the 40 !! my summer has been the worst I can ever remember. Im on antidepressents, but it isent helping much with the mood swings and depression. I feel like a blimp and Ive never seen my body look this mis porportioned ever....even when I was pregnant!! the only thing that keeps me going...is my kids and grandkids. did your hair stop falling out? I love your new pic, you look great!! positive thoughts your way!! Tina
Group Founderkelli1b
kelli1b
Aww Im SO sorry! I totally relate (hugs). Are they still tapering you down? Can they change your antidepressant? Maybe a mood stabilizer instead? My daughters counselor recommended this for me when I was on them. I didn't actually take them but SHOULD have. Here is what helped me - I'm not going to lie, it only helped a little:

It was not salt that was the enemy - its carbs! My stupid doc who put me on them told me salt so I cooked low sodium for months and still ballooned, then after the fact my pcp said oh no its carbs you should have avoided.

My pcp said don't even try to lose any weight while on that dose - I know because I went on the cabbage soup diet and it was an epic fail. I had to wait until I was completely OFF.

I also got acne and hair growing on my face LOL!!! When I got OFF completely - I joined Weight Watchers (online only) like $18 a month and dropped like 15 lbs in a couple of months. I did have to exercise but I only did the Wii (Wii fit plus) which is like hula hoop, snowball fights, etc.

My hair - yes it stopped falling out thank god. I really, in my heart totally believe, its when my lungs relapse, thats when my hair falls out. Its happened twice now. First the exhaustion, then the widespread body pain, then the rash on my arm, then memory issues and hair falling out. My lungs are stable which is all I can hope for. Its not easy but it is manageable. If I get sick again I will lose my job, I'm convinced..so I keep on keeping on! Hey message me if you ever want my # k? I'm going camping so If I don't respond right away you know why. Hang in there...this is just a season...keep thinking about your kids and g'kids!