Willie X Shapiri
Forum Replies Created
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Yes, it’s possible. I take Cell Cept and due to COVID the doctor said my PF was progressing so she upped my meds to three in the morning, same at night. I was getting short of breath and nauseous. My red and white blood count were going down. I was sent to a hematologist who showed me a chart and the blood count had started going down when the doctor had increased the meds. He called her, I went back to the usual 2 in the AM and PM and have been feeling so much better. Don’t be afraid to talk to your doctor. Remember, she’s there to help you.
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My situation is pretty much like yours. I do get fatigued but, like you, I take a short rest and good to go. I sleep on my back with my head elevated a little. I just put the bottom of the pillow under my neck and my head is cradled. I also have a cough like yours. It comes in spurts. I also exercise, very slowly, mainly a slow walk on the treadmill and stretches. We learn what our bodies need as we go along. One thing I have to say about the fatigue, when I have to rest, it’s overwhelming. So I try to rest immediately and I make a point of walking short distances outside in this heat. I hope everything works out for you. I hope for all of us who suffer with this.
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I find using the netti pot is very helpful
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Hi Lori, sorry to hear what you’re going through. I know what you’re feeling. I think all on this website do. My mother died of IPF in 2001. I was told I had nothing to fear, that it wasn’t hereditary. In 2016 I finally got a diagnosis of Sjogren’s. In 2017 they hit me with the bomb that I had IPF. I was devastated and was told that technology evolves and diagnosis come to light that never have come before. It was terrifying. I was paralyzed with fear. I too saw what my Mom went through.
I’m now 74, andI’m involved in my church big time, I take classes, and I go out with family and friends and am in the process of renovating my apt. I know what my limits are and have learned to tweak my activities a bit. I can’t carry parcels so I bought a rolling backpack when I shop, I sit when I need to. I get tired so when I do I rest 10, 20, 30 minutes, whatever I need. I can’t walk long distances so I bus it. I find I need 8 hours sleep minimum. Everyone says the same – you do too much – stop! I can’t exercise hard so I do it gently and I cope with some serious coughing. Just remember people mean well. They really do. I forgot to mention I had COVID to compound everything but I’m still here! It was horrible, but I’m still here!
Changes come no matter what whether we have an illness or not. One day I decided that I could live in fear which means no enjoyment or go with the flow and enjoy every minute. I keep up with my doctors’ appointments which is important. I do hope you do whatever you need to to feel better. When someone says you do too much, smile. I do and reply, “I’ll do till I can’t!” We don’t know what the future holds, none of us do. Keep active, do things that make you happy, don’t surround yourself with negativity. Activity is good for the mind. We don’t have idle time to dwell on what we have. Lori, G-d bless you. -
Hi Bob, I’m Willie. I have Sjogren’s and Pulmonary Fibrosis so I’m battling a crippling fatigue and debilitating cough. I’ve just been told I have nodules on my lungs which weren’t there 6 months ago. God only knows what my future holds but I keep plowing through the days doing my best. Nothing seems to help the cough. I’m going to try the Fisherman’s cough drops which others have mentioned. Good luck to both of us.