Laila
Forum Replies Created
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Hi all
I live in the snowy north and walk outdoors as often as possible. I was diagnosed in Dec 2020 and the following winter while on mega doses prednisone was miserable. I was told to exercise as little as possible. Wrong! My next doctor told me to exercise and I bought an Apple watch and haven’t looked back. The prednisone has played havoc with my osteopenia so I’m super careful about falling – no more skating or cross country skiing. We walk when it’s not icy and bought Kicksleds for the whole family. We go out together and if I need to I can always sit down.
I’m also pretty much hibernating now. My doctor told me that I would have a 50% chance of not leaving the hospital if I catch a cold – let alone Covid. So socializing is all outdoors now!
The one thing I’m not doing is weight training. I hate it! Does anyone have any suggestions to make it more fun and tolerable? My GP says it’s important to maintain my strength should my lungs deteriorate more. I have to work on this …
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What an interesting long conversation! Great to see so many industrious people. Maybe Eric can create a web platform for people to trade and sell our work!
I was diagnosed with IPF in the first year of the pandemic just after putting on the finishing touches for my ceramics studio…. the one that my respirologist forbade me to enter … lol! I’m still trying to figure out how I can go back to ceramics because I love it so much … in the meantime, I am cleaning our house and sorting through decades of photos, letters etc with the hope of creating a sun-filled studio in our living room. I’ve been dabbling with drawing and painting off and on for years. Hoping to renew my focus and enjoy learning from all the inspirational artists on the internet. Anyone else inspired by a particular art teacher? -
Hello Charleen and everyone
Thank you all for this amazing conversation.
When my respirologist mentioned the eventual possibility of a lung transplant I laughed and told her I was too old (at 66). Wrong answer obviously!
So if and when the time comes that you need/want to add your name to a transplant list, are there particular hospitals or health centres with long-term track records and good reputations for success?
Charleen, I’m in Canada too.
Laila -
Thanks for starting this thread @dougpys
Since I was first diagnosed in December 2020 my thoughts have swung from total shock at the possibility that I wouldn’t live to see my youngest graduate from uni, to a detached interest in this “rare disease” to massive denial and back again. I’m doing all I can to be healthy and have pretty much hibernated for the past two years. My GP has told me that “this is not a life” but my respirologist has said that if I have any sort of respiratory infection and am hospitalized I have a 50% chance of not surviving. A bit of a jolt to hear that!
I’ve been lurking on this forum for the past year and have appreciated learning from the conversations between people who are further along with this disease. Thanks to you all.
At this point I feel that I’m doing remarkably well but am haunted by my respirologist’s comments that my condition can deteriorate quickly at any time. This gives me the shivers but I’m just taking everyday as it comes, trying to take good care of myself and enjoying the people in my life.
Big hugs to you all. -
Hi Adelaide and everyone
If you enjoy the yin yoga, you might also like the stretching classes by Mady Morrison on youtube. She’s from Berlin and has yoga and stretching classes – some with just music – no talking. I try to do one of two classes daily. They help me keep calm, relaxed and relieve my chronic back issues. And I love her music!
cheers
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Thank you Debra
I’m not sure about the two meds that you mentioned. When I mentioned antifibrotics to my respirologist she suggested that I wait because the side effects are so severe. I wonder if that is the best advice and would hate to miss living healthier for longer if they do indeed help.
Good for you for travelling. I have stayed home for two years now… no travel, no visitors but lots of online and curbside shopping. Not how I expected to spend my retirement at all! Lol