Backpacking with Lupus????

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

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!

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

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.

I realized I never followed up on this…they determined I have both Lupus and Non- Hodgkins Lymphoma and have went through treatment and now am on maintenance medications (for both).  I did the Uinta Highline tail in August and it went exceedingly well.  I had planned on short days and built in a contingency day (for weather, illness, etc) which I wouldn’t normally do, and I exceeded all my expectations doing some “bigger” mileage days – a 17 mile day and multiple 15 mile days finishing the trail faster than I’d planned.  I felt great and my feet ended up being my limiting factor – perhaps more due to the fact that I hadn’t hiked much – more than how I felt otherwise.

My normal training the past five years or so has focused more on (road) cycling more than running, which was my go-to in the past.  It took a while after being off the bike for several months but the past few months I’ve been riding great and back to 2023 form and back riding the “A” -Group weekend rides and doing pulls on the front.  I did gain 15 lbs (up from 165 to 180) when they had me on steroids for a while that I’ve been unable to lose (to be honest I’ve just not been real disciplined) that I notice on the climbs, but to be honest I’m super happy with where I’ve gotten back to.

Glad to hear it, and am encouraged by your update. I have a mid-Jan “date” with a rheumatologist, hoping my blood work was a false positive, but if not glad to have flagged things before any deleterious symptoms.