Backpacking with Lupus????

[Brad Rogers]

I just got out of the hospital after being admitted for severe anemia – after 5 days and nothing definitive on why I’m so anemic, the doctors seem to be leaning toward Lupus.  They claim that after we get everything under control and in remission I should be able to continue activities as normal, but obviously that gives me pause doing a high alpine trip at elevation with few bailout points.

Has anyone had experience backpacking (and doing other activities – I’m an avid cyclist and occasional runner too) post Lupus diagnosis?    I’m really concerned about not being able to do the things that I love at the level that I was previously.

[Terran Terran]

I hope you’re seeing a rheumatologist. If not insist on it. That is the person that I would ask.

[Brad Rogers]

Currently I’m not but that’s because I just got out of the hospital on Thursday.  I have an appointment with one on Wednesday but I get the feeling they’re not going to have a real sense of what I am hoping and wanting to do!

[Jerry Adams]

In oregon it takes months to get an appointment with a rheumatologist.  Two people i know of.

 

[Terran Terran]

Some you’ll have to figure out for yourself, but there’s a lot of good information out there. A lot of snake oil too.  When my ex was diagnosed with rheumatoid arthritis, we were going to a GP. He put a lot of unnecessary restrictions on her diet and did little else. It was only in a book from the arthritis foundation where it said to see a rheumatologist. It made a huge difference in her treatment. We were lucky. There were only 2 rheumatologists in town. One only did research, the other took patients as well as doing research. I was working for Lord Hanson and he had just donated a million dollars to the one we went to. We were treated very well. Still the  treatment was trying one prescription after another until he settled on methotrexate which worked well. At the time it was all experimental. I have a tenant with lupus. I know the cold affects her. I don’t know what else. I won’t expand. There’s too much hearsay already. My point is, I can’t stress enough how important a rheumatologist is in your treatment. I wish I had better advice. Better news. I’ve been very lucky in life, but as I age, I realize there are many things that I can no longer do. Life is a blessing. A miracle from the beginning. Remember that. Enjoy what you can.  It may only be shorter hikes or car camping. It’s still very enjoyable. Treat it and go on. It’s another challenge. Another adventure. Life is good.

[Author]

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