I was wondering if anyone had experience living or traveling to an arid environment with Sjogrens. I would love to visit NV but am scared about the low humidity levels. Thanks so much.
Hello,
The national convention for Sjogren's Foundation was held in Arizona this year, and I also worried about the dry climate. I thought it was actually kind of funny that they would have the conference there! ;D
My eyes and skin were definitely affected. I drank water constantly, sucked on sugar free candies, and slathered on body butter at least three times a day. I used my eye drops as often as I could.
In spite of the increased dryness, I did have a really great time.
I'd say - go for it!
Julia
Hi kcoffiner
I used to live close to Reno, Nv (an hour away), I always had a tough time with the sage brush, instead of it drying me out, my eyes and nose would water! I would actually go through a box of kleenix in a hour but as usual my mouth would be bone dry!
Just be prepared with all the "sjoggie" basic important stuff..... eye drops, water and fluids, carry along a spray bottle to spray on your face, lozenges. I usually have a small bag that fits in my purse filled with all the "goodies" a sjoggie would need!
Take Care and Have fun!
Debora
I live in an arid climate in Northern California and its not really an issue with dryness. It is an issue for me and the heat however as I'm very heat intolerant.
Steve
hey, I'm with you steve. I can't stand the heat, last week was awful!!! how have you been, I am going to call to go to ucsf soon, have to figure out my schedule at work. Our rhuem said it is important that I go. Did you biopsy heal well? April
Hi Aprildawn....Yes, the biopsy was fine and healed well and no residual stuff from it. I only just yesterday got my results after about two months. It came back positive. I go and see our Rhumy next week again...I like her but darn the waiting room wait is a long time. I sat in the waiting room for three hours last time and thats after a three hour drive to get there.
At present I now have Sjogrens, Celiac Disease and also reactive Arthritis which is kind of like Rhumatoid arthritis and causing bone spurs all along my spine. I'm also having to go in for a last minute colonostophy to check for Colitis or Krohns and I'm having problems with the GI system. The gift that keeps on giving I heard someone say. Go ahead and go in for it, the UCSF Sjogrens study pays you 200.00 and they give you lunch and pay for parking. I think its important to have that test as its the gold mark in diagnosis. Dr. Wu there is great. If disability is ever something you want to pursue it might help to have that official diagnosis.
Steve, you really lucked out with your diagnosis etc! I'm glad as many have to go without and struggle to get care. To see my rheumy, it's an hour and half drive one way and I'm usually in her office for 3 hours and this is in hicktown Michigan!
We don't get $200 for any tests here, either, darn. ;D Lucy
Hi Lucy, yes fortunatley there is a on-going Sjogrens study beind done at UCSF in San Francisco. They are trying to standardize the testing for Sjogrens so being part of this study helps their understanding of it. I have to go back in two years so they can measure the development. If you have to spend that much time at the rhumy's you should just plan a vacation to San Francisco and do this and enjoy the city at the same time. At least the 200.00 would pay for part of your ticket. The number to call would be 415-476-0535.
Steve
Thanks for the info. I doubt I'll make it to SF although I do get as far as Las Vegas every couple of years. That's not even sounding good though as stuff (and age) progress. Friends are flying to a small town in NV which might be nicer. I do feel lucky, though, to have the U of Michigan within a couple of hours away. They were the ones who diagnosed me. I found a wonderful rheumy in still a different city. We just have to put up with all the atrocities like wasting time, etc.
Lucy
Hi steve, I can't believe you had to wait that long. I have never waited more than 10 minutes!! That guy behind the desk is so nice and funny too. Last tie I got lost and he mapquested my directions, it was a riot. I am glad it all went good for you. I think I have a definite diagnosis because I have the anibodies. It can be so confusing at times. I have been hurting the last few days more that usual, I wonder if its the weather. Sorry about the GI problems you have been having. I work in a GI lab. Good luck with the prep, its the worst part. The colonoscopy most people don't even remember. If you take alot of pain meds like me it might take more meds for you for your sedation. You may want to mention that. All MD's are different though. Sounds like this may not be your first time though. Good luck. Hope its just IBD ( Irritable Bowel disease). I think I have that but not bad. I am not having a fellow md I work with do that to me, too embarrassing!! Go fiber!!!! that's a joke at work because everyone get the FIBER TALK!
So what are they doing for your reactive arthritis, I haven't heard that term before. Bone spurs....OUCH!
I need to think of a closing for -- have a pain free day......April
Hi Steve,
I don't know if I missed it somewhere or not but wondering if you've started on your gluten free diet for the Sprue? My sister-in-law has it and once she got off the gluten and everything the stomach stuff cleared up for the most part. Hope you get to feeling better soon!
Deb
PS: If you need any food suggestions let me know after 5 years of helping her I've gotten pretty good at it :)
THanks DebbiK, oh yes...been on gluten for awhile now. It got better for awhile but now other things are causing GI problems. I've been around my mother and brother that are celiac for years so it was a very easy transition. They know all the tricks!
The Celiac is the least of my problems these days. With the Sjogrens and Reactive arthritis I have my hands full.
Steve
Arid environments-----
YES! New Mexico has dried me out to the extreme! We run a whole house humidifier keeping it at about 38%. Any higher and my hubby says his nose swells.
We also run a small humidifier in the bedroom at night. In addition, I have a heated humidifier on my CPAP.
I take Mucinex like crazy every day. I use Systane, Zatidor and REstasis. Restasis had helped my discomfort the most. Yay! I'm thrilled not to be so uncomfortable. Right now my allergies are driving my nose crazy. I'm thinking of seeing an allergist for testing again.
(I took allergy injections in Texas, but I think I've become allergic to cedar, pine, sage and other stuff out here.)
I use Nasalcrom for the nose and Ayr ointment at night.
The sad part is : I LOVE New Mexico!!! I wanted to move here. I love the terrain, the weather here in the lower Rio Grande Valley. I want to open the doors and windows in the mornings and evenings to enjoy the nice weather, but I don't dare now with the allergy reactions. Sometimes I wear a mask when I walk outdoors---another delight,under normal circumstances. Birds, cool and clear air, flora and fauna! The chance to see a golden eagle or an oriole is too good to pass up!!
I refuse to give up, but darn I'm dry!!!!
coopwall
Ok I'm a little concerned not that I'm reading this thread. I'm headed to Scottsdale next Thursday for 2 weeks of classes. I haven't been in dry, arid weather for sometime and never with Sjogrens. Any suggestions? I've got my Restasis and gum all packed ;D.
Deb
Welcome Coopwall and Hello everybody,
I'm a long-time New Mexico resident (since '76) and just last year found out I have Sjogren's. My eyes are the most affected, and they've been dry and a problem for about 25 years. I'm used to the dry climate, and now my eyes go completely nuts if I go to a moist climate (like my MIL's place in Florida). My skin appreciates the humidity but my eyes don't like changes AT ALL. I suspect it's the plants and pollens that upset everything, although I've never been tested for allergies.
But May in New Mexico is rough, I'll agree to that! Tree pollen and wind. I've been miserable all month. All the drops I use (like those you listed) usually make things worse, but I end up trying them all out of desperation. I think rinsing with plain saline has helped me the most lately-- 2-3 times a day. This helps by cleaning out some of the irritants.
Don't be afraid of arid climates, but do protect your eyes with foam-line wrap around sunglasses and try to stay indoors during the hot part of the day. The sun is Very Intense here--maybe more so than in Arizona or Nevada.
C
Thanks Coopwall,
LOL I definitely have my sunscreen as I'm fair so bought a SPF 70! Always have lip balm and will definitely buy some otc eye drops to go along with my Restasis. Thanks for the help!
Deb