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  • Still sick, so now what?

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    Old 09-02-2014, 08:39 PM   #1
    QueenTitania
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    Still sick, so now what?

    I've struggled with major illnesses most of my life. I was initially diagnosed with fibromyalgia and asthma about 15 years ago. In 2009, I finally had to quit working full time and was diagnosed with polymyalgic rheumatica. I could not manage my symptoms and my job at the same time. I was able to retire from my job with partial benefits due to disability and started the SSD process. I finally had a bronchial biopsy in 2012 and was diagnosed with Sarcoidosis, and SSD declared me disabled.

    I have been on nighttime O2 since 2012 and while I'm able to go without daytime O2 for three or four months at a time, I just started a new flare and they've increased my O2 to 2 liters. I take 10 mgs of prenisone, plaquinel, sulphasalazine, and cymbalta to try to control the illnesses, and percocet, baclofen, and diclofenac for my pain. I also take Klor-Con, Vitamin D, Advair, and a whole slew of other medicine for other symptoms as well. I've tried weaning off the prednisone 4 or 5 times in the past 5 years, but every time I wind up getting sicker. I've been on prednisone continuously for 7 years now and gained 50 pounds. I've lost as much as 40 pounds of it during my tapers, but always immediately gain it back when I have a flare and my prednisone is increased.

    I feel like I have a small life now, whereas it was much larger when I worked. I have three grandkids that I spend time with once or twice a week. I read about 3-5 books a week and write reviews for an online magazine. I spend too much time on the computer and about 2-3 hours a day on television. I can't make it during the day without a nap, but I have trouble sleeping at night even though I feel exhausted all the time.

    When I'm stable, I feel anxious, waiting for the next flare, and when I have a flare, I'm depressed. I've tried to go back to school and work part-time, but I always have a flare and have to quit. At this point in my life, I no longer ask "why me?" - instead I'm asking "is this all there is left?"

    Does anyone have any suggestions for things I could do differently - I'm really struggling as I bounce back and forth between anxiety and depression. I'm sick and tired of being sick and tired. How do I find happiness and fulfillment with this disease?

     
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    Old 10-17-2014, 10:47 AM   #2
    sandler
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    Re: Still sick, so now what?

    Quote:
    Originally Posted by QueenTitania View Post
    I've struggled with major illnesses most of my life. I was initially diagnosed with fibromyalgia and asthma about 15 years ago. In 2009, I finally had to quit working full time and was diagnosed with polymyalgic rheumatica. I could not manage my symptoms and my job at the same time. I was able to retire from my job with partial benefits due to disability and started the SSD process. I finally had a bronchial biopsy in 2012 and was diagnosed with Sarcoidosis, and SSD declared me disabled. How do I find happiness and fulfillment with this disease?
    I am not a doctor but my wife had sarcodosis for a year which now went away and hopefully not coming back. She coughed a lot and green mucus came out. I noticed the more she dis it the worse it got. So I would recommend cough suppressing drops like the ones you can get at Walgreens. I myself have asthma and constant allergy. My doctor recommended replacing mattress every 10 years and using something like "Protect-A-Bed Allerzip Smooth Allergy Bug Mattress Encasement Protector" against dust mites. Taking "magnesium" vitamins helps loosen chest tigtness for me. And using "NeilMed Sinus Rinse" help with mucus. I have a feeling sarcodosis and allergies got a lot in common and similar treatments would help. Good luck.

    Last edited by sandler; 10-17-2014 at 11:03 AM. Reason: Typo

     
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