I’m lucky. My health is good enough that I can travel and my job – writing blogs – allows me to travel and camp out – almost always for free.
Me, River, Skye, the big yellow van and, at times my partner, have been a road trip for several years. We’ve mostly explored the West but this summer we’re heading east in our first East Coast road trip.
Follow along with us, if you feel inclined, as we head from Las Vegas to Miami to participate in a exercise and nutrition study with Dr. Klimas, then up to Wash DC to visit my brother and hopefully speak with Avindra Nath and Vicky Whittemore at the NIH, then down to Nashville for the Dysautonomia conference, and then lastly over to Alabama to see Dr. Pridgen and Jarred Younger at his Pain and Fatigue Lab. After that it’s over to the Rockies!
I hope you will come on board. I promise you will see some beautiful sights. :). Feel free to ask any questions and suggestions for places to visit are welcome.
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Wow! That sounds so fun and exciting and interesting. Not to mention tiring. I’m extremely grateful for all the advocacy & education that you’ll be doing on behalf of all of us on your trip! Thank you Cort and happy travels!
Thanks. So far I’ve discovered that I can either drive or write = not both…
Oh, fun. Traveling is one of the things I miss most, being homebound. I live vicariously through others, and will be looking you up more often, light sensitivity or no. Thanks for doing these personal investigations on our behalf.
Like Denise B. I’m homebound but i’m still capable of bits of joy here and there. A lot of it is from vicarious adventures. I wish you safe journey. Learn a lot for those who can’t pull off traveling anymore. It sounds exhausting but of so fun. As my doc says pace, pace, pace.
Thanks….Pacing is indeed key. I tell you I was sooo nervous starting out. Even though I’ve really done a tremendous amount of camping over time, I was a bundle of nerves starting out. It all worked out, though.
Happy Trails to you all! All it took was a reminder that you have to keep living. I’m the one that had the 4Runner (loved that vehicle) with 400k miles, traveling from Canada to Baja and every dirt road in between…
I guess I was ready for a change, as I was just gifted a ‘new’ Toyota Tacoma with a camper shell. Amazing. I have already ventured out, have plans for a Grand Canyon raft trip, and feel like anything is possible again (with pacing, of course). Thanks for sharing the inspiration, really. Keep rollin’ & researchin’.
I will comment somewhere else about this, but I have an immunoglobulin & NKC function deficiency and will see an immunologist in So. Cal. soon, while I’m waiting to see Dr Peterson in Incline. I want to try IVIG for the residual M.E. symptoms (viral encephalitis, cytokines?). I’d like to report back to share. I did anti-virals for a smoldering shingles-in my face (!) which helped. What an insane condition for so many of us… I guess it’s about what symptoms one can control and what damage gets done.
Whoa! A Tacoma with a camper shell…A nice gift!
(I busted up a Tacoma during the first part of my trip (lol)…wasn’t funny at the time…) 4WD? (I’ll bejealous if it is…)
Rolling and researching…I like it. Looking forward to hearing about the new immune tests and treatments. If you have low IgG hopefully you can get some IVIG. THAT will be interesting.
Yes, it’s 4WD…2011…double cab ; ) So grateful.
I will report back about the IVIG, in the HR blog-treatments. I learned about the NKC function test on HR (thank you!), and realized that I had symptoms of M.E.(HR & Unrest) which put it all together for me. Everyone with CFS/M.E. should have quantitative immunoglobulin and IGG subclass tests.
I have low IGG & IGG subclass 1, as well as very low NKCF, but had a bacterial antibody formation workup 10 years ago-which was “excellent”. It’s a viral thing…and a brain cytokine thing.
My Immunologist just said I probably have MCAS and Ehlers Danlos… Ok, I will report back after a few IVIG treatments.
Again, thank you for this amazing website of research articles & hosting the forums of a courageous community which are literally crowd sourcing health care.
Enjoy the summer with you and your loved ones!
hi Cort….heard you are traveling to Atlanta…we would love to meet you! come see us if possible.
We can work out details later…happy travels
Thank Elizabeth. I’ll let you know 🙂