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mickeyheart2 · 09-24-2012, 06:26 PM

wanted to see if there was in any one else out there that where full time rvers with lupus

Skip426 · 09-28-2012, 06:25 PM

Sister-in-law, not a full timer, has lupus. In the past 8 years as the symtoms worsened, she and her husband have had to sell their home in a semi-arid area and move to the west coast of Canada to get to a climate that she felt comfortable in. Even here she has trouble mid summer 90+ temps. They tried RVing to the south and she had problems in the 70s in Arizona becase of the low humidity. For now because of her husbands health , they are no longer RVing. They plan to try again but say they will limit their travel to the spring and fall hoping for temps in the low70s.
Have you developed the sun sensitivity yet ?
Any of the other arthritis symtoms ?
DW has so far been lucky, although she has health issues, lupus isn't one of them. We'd both go nuts if we couldn't travel.

mickeyheart2 · 09-28-2012, 07:45 PM

yea i have the sun sensitivity i cant go out with out lossing my breath some times the rv doesnt have ac right now but there nothin i can do about that i have the sle lupus with and skin and i have swallow around my heart and lungs they found it late i have alot of damage done to my heart and lungs/ nerves i also have kiney stones i pass once a week i also have raynauds syndrome i have the arthritis sometime mostly when i wake up the bad thing is im only 27 yrs old with all of this i was hoping to find others out there with lupus to help with tips and tricks

Skip426 · 09-28-2012, 08:52 PM

S-i-L wears hats, and light colored, uv protective clothing,short sleeves, shorts only when in full shade. Goes outside to work in the yard only on cloudy days or retreats inside by 10 AM on sunny days. The move to the coast, cooler, humid climate has been the single biggest help. She has been dealing with this for 18 years, currently 55( you didn't hear that from me ) Dr. is after her to quit smoking, that's hard for a 40 year smoker.
She has been lucky , in a way, no internal organ damage, no joint damage with the arthritis. M-i-L had severe joint defomation, but no lupus skin issues.
Before the move S-i-L was trapped inside an A/C house for most of the summer, even outside at night with the dry air could cause pain. Now at least there are very few days when she is housebound all day. Walking 100ft across a mall parking lot , on a sunny day can set her back.
Lupus can force many lifestyle changes,and require dedication to deal with, particularly at you age. I wish you the strength to deal with all that is before you and luck in finding a Dr. with the knowledge to help.

mickeyheart2 · 09-28-2012, 09:32 PM

yea u can only wish to god to find a doctor that know what he is doing yea my rv has all it window covered and i spend all day in side yea if i spend a cpl hr in the sun i get sick and some times if it really bad i get put in the hositpal thank you for responding and talking to me im glad im not the only one out here that is rving with this

Skip426 · 09-28-2012, 10:02 PM

Any chance you could re-locate ? Relatives you could stay with in Vermont, Maine, Washington,Oregon near the coast in cooler temps, for a try. Have you looked around, online for lupus support groups, there has to be good info, out there, on living with lupus, even on Drs who others have had good luck with.