I have PAH. When, on that rare occasion that I go out to a Doc appointment AND grab lunch out, it will take me a couple days to recover. The 2nd day is the worst. I'm curious to know how long it takes you to recover from an activity?
Deb, you ARE normal. We have a disease and what we go through is normal. I think more like chapters of a novel. My “normals” change with each chapter.
Thanks everyone! There are so many factors that play into this. I guess we must listen to our bodies and do what it is telling us to do. My biggest problem is guilt. So much guilt. I have a long list of activities I want to do but my body is telling me not today. 😕. Have a wonderful Memorial Day. Thank you to all those who have served and gave their lives for the US. 🇺🇸
BlackJen. I am so happy you found a treatment that works for you.❤️🌺. I hope you continue to do well and are looking at many good days ahead . I would like for you to be on my team.❤️🌺. Have a blessed and happy day.🌺❤️
Just curious what type of testament are you on? Maybe a tweak in your prescriptions could add some relief. I am currently on a 24/7 medication pump of Veletri. I can’t tell you how much it has changed my life. Before this treatment I could not walk from the couch to the kitchen with out feeling like I was going to pass out. And I live in an apartment so that’s not a very far walk. I was hospitalize a few times for “passing out”. I suffered for over a year. Because I also have Lupus the doctors just kept blaming that and how it’s such an “unknown” disease and everyone’s bodies are different. The day before my last hospital stay (3 weeks in the ICU) I was at my rheumatologist crying telling her I can’t live like this. I was so sick of being sick. All she could say was “I know, I know it will take some time”. I asked her time for what? It’s not like there is anything getting better that I just need to be patient with and reminded her that I am just getting worse. Needless to say I have switched rheumatologist. But now on this treatment I can even walk upstairs. Prior I could not walk up stairs without “pulling” myself up with the handrail after each step. I know the same treatment isn’t for everyone and it is definitely hard to get use to being on the pump.
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