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View Full Version : Hi all! So happy to find you!



JuliaL
08-04-2011, 12:02 AM
My name is Julia and I live in Texas. I was diagnosed with SLE about 6 years ago and it just doesn't get any easier, does it? This summer has been absolutely brutal in Texas and no one around me gets how difficult it is to have to hide for months from 100+ degree heat!

I am so pleased to find this group of people who likely do understand and I hope I can offer encouragement and support, as well!

lovedbyHim
08-04-2011, 12:06 AM
My name is Julia and I liv

e in Texas. I was diagnosed with SLE about 6 years ago and it just doesn't get any easier, does it? This summer has been absolutely brutal in Texas and no one around me gets how difficult it is to have to hide for months from 100+ degree heat!

I am so pleased to find this group of people who likely do understand and I hope I can offer encouragement and support, as well!


Hi Julia, so glad to have you join us! Yes this summer has been brutal on so many, especially those of us who mind the heat. Hope this family can bring you a place to smile!

JuliaL
08-04-2011, 12:16 AM
Thank you so much, LovedbyHim! You've already made me smile!

I had to run errands today and am now paying the price with rashes, painful joints and that cruddy "flu-like" feeling we know so well. Tramadol isn't cutting it, lol. But at least by searching for new suggestions on dealing with it, I found y'all! Always a silver lining, you just have to look.

steve.b
08-04-2011, 12:19 AM
hi julia,
come over to australia, it is winter at present.
after years of drought, we are using wellington boots to get around.
no 100 degrees...... just mud.

any way welcome.

ps. catch up with tgal, she is from texas.
she is a moderator here.

sharpiessave
08-04-2011, 12:21 AM
Here's a middle of the night Welcome from me too. = ) I'm with you and Tammy on the heat issue. It's killing me. I'm all overly dramatic about it to the point of annoying my family and friends. I can't step outside without uttering "OMG, it's hot!" I gotta cut that out though, because this morning my 4yo goddaughter stepped out with me and said it before I could. Oops.

Everyone's awesome here, and I'm so glad you found us!

Sharpie

JuliaL
08-04-2011, 12:24 AM
Hi Steve!
Too funny because I've been wishing I could just fly away and visit my friends in England to escape the heat, only to find out they're dealing with a heatwave there, too! So I just may have to play the lotto, win, and land in Australia. Wishful thinking! But I should order some Pimms and elderflower cordial. SO refreshing!

I will look for tgal! We can swap "Texas has officially become Hell, USA" heat and drought stories!

Cheers,
Julia

JuliaL
08-04-2011, 12:29 AM
Hi Sharpie!
Glad to meet you! Only my dogs hear me complain on a daily basis and they seem very sympathetic, lol. Haha, around the neighborhood, though, I'm known as the "lady who is allergic to the sun," according to the kids. Might explain why I never get trick-or-treaters!!!

Thank you for the warm welcome!

gkf109
08-04-2011, 05:11 AM
Hello and welcome, I have been here only a couple months, but this is a great site, hope all is well and have a great day- Gary

Elo
08-04-2011, 06:10 AM
Welcome Julia (:
I'm not in texas, but i'm still experiencing a bit of a heat wave, and it's pretty freaking bad isn't it?
Glad you found us, I really hope it helps you feel calmer and more understood with the disease.
Have a good one (:

rob
08-04-2011, 06:59 AM
Hi Steve!
Too funny because I've been wishing I could just fly away and visit my friends in England to escape the heat, only to find out they're dealing with a heatwave there, too! So I just may have to play the lotto, win, and land in Australia. Wishful thinking! But I should order some Pimms and elderflower cordial. SO refreshing!

I will look for tgal! We can swap "Texas has officially become Hell, USA" heat and drought stories!

Cheers,
Julia

Hello Julia,

You could come up to Maine. It's a sweltering 58 degrees at 10:00 AM. Forecast high is 65. I just heard on the news that it's going to be yet another 100 plus day down there.

Yes, our other Moderator Tgal is also from Texas, and she's been telling me all about the hellish summer you've been having. I hope you all get a break sooner than later.

Welcome to WHL!

Rob

tgal
08-04-2011, 09:12 AM
Here's a middle of the night Welcome from me too. = ) I'm with you and Tammy on the heat issue. It's killing me. I'm all overly dramatic about it to the point of annoying my family and friends. I can't step outside without uttering "OMG, it's hot!" I gotta cut that out though, because this morning my 4yo goddaughter stepped out with me and said it before I could. Oops.

Everyone's awesome here, and I'm so glad you found us!


Sharpie


LOL@ goddaughter! That is too funny!

tgal
08-04-2011, 09:34 AM
Yay for Julia! Someone who has been down here in this nightmare! My family calls me the vampire but now I have a hard time going out when the sun goes down as well because it is still 95 degrees at 8PM. It has been crazy! Today I think it is supposed to be 104. I have decided that anything over 100 is simply hell so why worry with an extra degree to 4. LOL

Anyway, welcome to WHL. I am so glad that you found us. There are great people here and I know you will (and have been) made welcome. There are some wonderful threads to read through for information or simply start a thread of your own if there is something you want to talk about. I see that you have have been fighting with this for awhile so feel free to jump in with information or experience that you have.

Anyway, welcome to the WHL family! Make yourself at home and remember that we all understand how you feel

JuliaL
08-04-2011, 01:07 PM
Thanks, Elo! I just can't wait for autumn. Enough is enough!

Rob, whereabouts are you in Maine? I used to live in NH and we vacationed in Maine quite a bit. Ironically, when the autoimmune odyssey started for me 18 years ago, my neurologist there was pretty certain I had MS because it started with a lot of neurological stuff. But they never found MS plaques, said they would probably show up later, and a consulting doctor at Mass. General in Boston highly recommended that I move to a warm climate. He thought that the cold weather was making my blood vessels swell and my migraines worse. So, I found a job in Texas and we moved.

Apparently, MS does better in a warm climate? But that was the puzzle. I had worse and different symptoms on hot days but they never looked outside neurology for an explanation. So, the stuff caused by the cold did improve and I was able to function somewhat better but, later on, more symptoms developed and I got much worse. That's when RA or Lupus was suspected and I went off to rheumatology. LOL, my New England docs didn't know it at the time, of course, but they were sending me to one of the worst possible places to have Lupus!

Still, New England winters are LONG! Our Texas summers are always hot but the rest of the year is really quite good. Everything is a tradeoff. This year is absolutely brutal, though, and I don't think I could handle it if this became the norm.

Glad to meet y'all!

JuliaL
08-04-2011, 01:23 PM
Yay for Julia! Someone who has been down here in this nightmare! My family calls me the vampire but now I have a hard time going out when the sun goes down as well because it is still 95 degrees at 8PM. It has been crazy! Today I think it is supposed to be 104. I have decided that anything over 100 is simply hell so why worry with an extra degree to 4. LOL

Anyway, welcome to WHL. I am so glad that you found us. There are great people here and I know you will (and have been) made welcome. There are some wonderful threads to read through for information or simply start a thread of your own if there is something you want to talk about. I see that you have have been fighting with this for awhile so feel free to jump in with information or experience that you have.

Anyway, welcome to the WHL family! Make yourself at home and remember that we all understand how you feel



Hi Tgal!
Wow, you're in Houston so you have heat AND humidity! I used to live in the RGV and taught English Lit. there. It was pretty much "hot and hotter" almost year-round! After my son graduated from high school and moved to Lubbock to attend Texas Tech, I moved to Abilene where we rarely get a lot of humidity and it's much cheaper to live, besides. That helps.

We hit 106 yesterday and it will probably be about the same today. Haha, one of the TV weather guys described this as walking around in a blow dryer set on hot. That's exactly what it feels like. I absolutely had to do some grocery shopping and took my attendant along to help. Good thing -- I was an exhausted, whimpering mess by the time we finished. My joints are killing me today and I have no energy. It's depressing to know there's no relief in sight. We haven't had a good rain since Easter!

Haha, I don't think folks elsewhere understood how terrible it is here until they saw what happened to Tropical Storm Don! As soon as it hit Texas, it completely disappeared/evaporated! Craziness!

Anyhoo, I'm so glad to be here and to chat with folks who understand!

Cheers,
Julia

rob
08-04-2011, 03:46 PM
Rob, whereabouts are you in Maine? I used to live in NH and we vacationed in Maine quite a bit. Ironically, when the autoimmune odyssey started for me 18 years ago, my neurologist there was pretty certain I had MS because it started with a lot of neurological stuff. But they never found MS plaques, said they would probably show up later, and a consulting doctor at Mass. General in Boston highly recommended that I move to a warm climate. He thought that the cold weather was making my blood vessels swell and my migraines worse. So, I found a job in Texas and we moved.

Apparently, MS does better in a warm climate? But that was the puzzle. I had worse and different symptoms on hot days but they never looked outside neurology for an explanation. So, the stuff caused by the cold did improve and I was able to function somewhat better but, later on, more symptoms developed and I got much worse. That's when RA or Lupus was suspected and I went off to rheumatology. LOL, my New England docs didn't know it at the time, of course, but they were sending me to one of the worst possible places to have Lupus!

Still, New England winters are LONG! Our Texas summers are always hot but the rest of the year is really quite good. Everything is a tradeoff. This year is absolutely brutal, though, and I don't think I could handle it if this became the norm.

Glad to meet y'all!

Hi,

I live on a small peninsula in an unincorporated area, basically in the middle of nowhere. The closest town to me is Searsport. My parents live in Bangor, which isn't too far away. The winter on the coast is quite mild compared to inland and especially up north. We have beautiful weather from April through October. One of the best kepts secrets in northern New England!

In regards to MS, most people's MS symptoms worsen in hot climates. My Lupus symptoms were made worse by the heat as well. When I was diagnosed with SLE, I lived in Arizona. The heat was one of the main reasons for my move back to Maine where I grew up. I used to handle the heat just fine, but about a year before my "official" SLE diagnosis, I suddenly found that my internal temperature was no longer regulating itself like it should, and I would overheat and not cool down for hours, even sitting in front of an A/C unit on full blast. The flip side, is that I handle the cold surprisingly well. I'm always running warm it seems, so I like the cold.

Would probably feel differently if I had Raynauds, but fortunately, that's not part of my autoimmune "soup".

Stay cool!

Rob

mdawncooper
08-04-2011, 03:53 PM
We are so glad to have you. This is wonderful site. I look forward to talking to you often.

Melanie

kim,l
08-04-2011, 04:05 PM
hi julie welcome whl iam from sydney australia and it is cold here at the moment look forward to getting to know you

Melodyroseak
08-04-2011, 06:35 PM
Julie, you are welcome to Alaska too. Last 2 days around 80, but, usually around 70. And in the winter time it is dark allot, so you don't have to worry about the sun.

I am new to the board too. It seems like a great place to be.

JuliaL
08-04-2011, 06:42 PM
Thank you! Wow, so many lovely people from all over the place! Brilliant! Glad to meet everyone! :)

magistramarla
08-04-2011, 10:48 PM
Hi Julia,
I lived in San Antonio for seventeen years, and I used to teach Latin there. I truly hated the heat.
We now live on the coast of California, on the Monterey Bay. It's definitely paradise! The high is usually about 65 year round, and if it goes over 70, people around here complain. The low is rarely below 50. The ocean breeze is wonderful. If we want a bit of heat, all we have to do is drive about 30 miles inland. Also, it isn't far to "visit" snow in the mountains in the winter.
We are supposed to return to Texas in a year, but my hubby is hoping to get hired as a professor out here so that we can stay. I've found that I feel much better in the consistent cooler temps and lower humidity.
Welcome to WHL.
Hugs,
Marla

mdawncooper
08-05-2011, 03:36 PM
I am in Texas too and right on the coast so the heat is really doing me in too. I look forward to chatting with you.

Melanie

debbie-b
08-05-2011, 03:55 PM
Hi Julia,

A warm welcome from me as well.
I also lived in Texas, 10 years in Houston and 10 years in Dallas,but I moved to upstate New York about 6 years ago and I feel so much better. Like Rob, I love the cold weather, even though we have about 86F today, with high humitity, but my AC is running full steam.

Debbie

running girl
08-05-2011, 07:11 PM
Welcome Julia,

I didn't know my heat intolerance was a part of the Lupus. I just thought I was getting old...and grumpy. Sheesh, it's hot here in Southern Ontario too. What a summer!!

tgal
08-05-2011, 07:19 PM
Hi Julia,

A warm welcome from me as well.
I also lived in Texas, 10 years in Houston and 10 years in Dallas,but I moved to upstate New York about 6 years ago and I feel so much better. Like Rob, I love the cold weather, even though we have about 86F today, with high humitity, but my AC is running full steam.

Debbie

Have I mentioned that all the bragging by people who are not living in hell, sometimes referred to as Texas, will not be tolerated on this board. To rub our nose in the fact that there are parts of the world that are not hitting 109 degrees is simply wrong! (I wonder if I could give Rob an infraction LOLOL)

JuliaL
08-05-2011, 08:23 PM
Hahaha, Tgal, I agree! Of course, we could always send out the Texas Rangers (law enforcement, not baseball players, lol) to round them up and make them suffer here with us! That would teach them!

I just got back from Albertson's (supermarket) where I spent a crazy amount of time picking out fruit and veggies because I really didn't want to go back out into the heat. The cashier was a hoot -- of course, everyone's talking about this wretchedness and she said, "Well, if this doesn't break soon we're gonna have to ask Jesus to come and change all of the wine back into water!" LOL. When it's still 96 degrees at 10 p.m., we have a problem.

Thanks to all who introduced themselves and said hello!!!! I appreciate the lovely welcome!

Running girl, yep, the sun and heat sensitivity are a big part of it for many. I'm blond-haired and blue-eyed, so my skin has always been fair but if I'm outside for 10 minutes, even with sun block on, I get bad sunburn and rashes fast. And later my joints start aching and I feel like someone beat me. Really bad news. I've been in a lot of pain this week, simply from going to the grocery store and doing simple errands.

steve.b
08-05-2011, 09:19 PM
Have I mentioned that all the bragging by people who are not living in hell, sometimes referred to as Texas, will not be tolerated on this board. To rub our nose in the fact that there are parts of the world that are not hitting 109 degrees is simply wrong! (I wonder if I could give Rob an infraction LOLOL)

i will not complain that it is a whole 64.4 today in loverly perth - australia.

time for a holiday anyone?

n.mac
08-06-2011, 04:52 AM
nning girl, yep, the sun and heat sensitivity are a big part of it for many. I'm blond-haired and blue-eyed, so my skin has always been fair but if I'm outside for 10 minutes, even with sun block on, I get bad sunburn and rashes fast. And later my joints start aching and I feel like someone beat me. Really bad news. I've been in a lot of pain this week, simply from going to the grocery store and doing simple errands.[/QUOTE]

I have found that even 10 min can be too long in the sun. I never go out without sunblock and long sleeves. I found long sleeved shirts with built in 50 spf protection online from bass pro shops,columbia sports wear and duluth trading. the shirts have built in vent panels so they aren't as hot as regular shirts. a little pricey but worth the trouble.

Here in Chicago we sample everyones weather -We just had 2 or3 weeks of 100 deg weather and before long we will be knee deep in snow with sub zero temps. But spring and fall are great!

Elo
08-06-2011, 12:56 PM
Here in Chicago we sample everyones weather -We just had 2 or3 weeks of 100 deg weather and before long we will be knee deep in snow with sub zero temps. But spring and fall are great!

Hey! I live about 4 hours from you in IN. Think this heat wave will ever end? I want some raiiiiiiiinnnnnnnnnnnnn!!!!!

I'm still trying to think of the best place to live weather wise. Somewhere that doesn't get freezing cold, or so gosh darn hot in the summer. OOOO.. I want someplace that's autumn, all year round. *dreamy sigh*... yeah, right. :P

running girl
08-06-2011, 02:46 PM
I've always burned quickly and now the heat just zaps my energy. Even the slightest bit of exertion and I'm as red as a beat. I'm so thankful that we got ac last year. Lupus sucks.

debbie-b
08-06-2011, 03:05 PM
Have I mentioned that all the bragging by people who are not living in hell, sometimes referred to as Texas, will not be tolerated on this board. To rub our nose in the fact that there are parts of the world that are not hitting 109 degrees is simply wrong! (I wonder if I could give Rob an infraction LOLOL)



Sorry, I will never rub it in again. I will be in Texas in October, four days in Houston and four days in Dallas. We always go in October, hoping it won't be so hot, while we're there.
Hope you guys can get some relief soon.

Debbie

n.mac
08-06-2011, 05:01 PM
Hey! I live about 4 hours from you in IN. Think this heat wave will ever end? I want some raiiiiiiiinnnnnnnnnnnnn!!!!!

I'm still trying to think of the best place to live weather wise. Somewhere that doesn't get freezing cold, or so gosh darn hot in the summer. OOOO.. I want someplace that's autumn, all year round. *dreamy sigh*... yeah, right. :P


The heat wave will end a day or two before it starts snowing...it seems we don't get much spring or fall anymore!
I live 40 miles s-w of chicago (just south of rt 80 ) and it has been raining on and off all day. You must be downstate?
I hear oregon is nice-4 seasons without the extremes. My sister is moving there from duluth mn. so her idea of winter might be skeewed but she researched for about a year and picked oregon for her and her husband to relocate to as the economy has hit duluth hard.

lrs76
08-06-2011, 07:48 PM
Hi, magistramarla

I just joined today and have been reading through everyone's posts. I live in CA too - in Livermore (East Bay) and love visiting the Monterey area. It's a great place to be and the weather is awesome. I hope you are able to stay!

:-) Leila

lrs76
08-06-2011, 08:06 PM
All of you living in hot and humid places are real troopers. I am in CA (East SF Bay Area) and it can get up into the 100's here, but not much humidity - the heat/humidity combo is brutal. Hope you are all able to keep cool somehow and that the heat waves go away soon.