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View Full Version : I hate desert living



lovehubby
02-12-2011, 10:14 AM
Ok I am upset so please bare with me. I took my dog to the dog park. even had the stupid umbrella with me to keep the sun off of my face. 15 min later here comes the headache red face dizzy feeling. On top of that people saying hey whats with the umbrella. I am so tired of trying to explain myself to people. I had a hard time for a long time even saying the word Lupus. Now I say it so much that people look at me like sure if you say so. I am upset because I woke up this sunny morning thinking I don't have lupus they are wrong, I felt to good to have it. Then the bright idea to go out into the sunshine since I do live in Lake Havasu Az.all that good feeling I had when I woke up is gone. Now some of you might say why would I think I didn't have Lupus this morning, because it just works for me to think maybe they are wrong. Every month I think maybe the bloodwork will show a negative ANA and DS-DNA every month to the lab to get poked with that shimmer of hope. As stupid as it souds it works for me.

tgal
02-12-2011, 11:32 AM
Hugggs for you. I am so sorry that you are going through a hard spell. I know this can be such a difficult situation to be in. Those of us
in the hot climatesI (I am in Texas) wait for the cold spells and the cloudy days. Those that live up north dream of clear, warm days. I have about decided that there is no perfect place for those of us with Lupus. Good news is that you can come here to vent.

I do have to comment on the last line about every month you hope the bloodwork will will come back showing negative labs. No matter how many times they come back negative now you diagnosis will not change. Once there is a positive (real) diagnosis of and Auto immune disease it doesn't change just because the blood work comes back better. It changes because the meds are working, the flare isn't at bad, the moon is round *grins* who knows what causes it. Lupus doesn't go away but it can hide for months, years or decades in a kind of state of remission. That is what I will wish for you. Until there is a cure I wish you a pain free day and a disease that is in remission.

I understand that you say believing you don't have it gives you hope, hope is never bad. Just remember that Lupus or any autoimmune thing isn't a death sentence and finding the right doctors and the right meds can make you want to go into a place where you can almost forget that you have it.

lovehubby
02-12-2011, 11:43 AM
I understand what you are saying I guess I am just having a bad day. I just hate to say I have Lupus and it kills me when my doctors saids to me That my levels are not real high so it is not that bad he has no idea what I am feeling. I dont care a positive reading is a positive reading ! And I feel bad but not all the time I which he understood more. I have been off the plaquenil for a month and just cant take this med. so I don't know what he wants to do yet. Sometimes the meds are worse then the Lupus

tgal
02-12-2011, 11:58 AM
Oh Michele I completely understand! Don't you want to shoot them? I often wish that each doctor that dealt with us would have to suffer like us for a week. If that happened I believe we would get better treatment. I am sorry you are having trouble with the plaquenil. It took many months but it did help me. I hope your doctor is willing to do something else for you. If not, fire him and get another! Don't let them tell you that you are not sick... you know your body better than they do(((hugs)))

jmail
02-12-2011, 04:33 PM
There are meds that can induce lupus-like symptoms, and I'm almost of the opinion that any doc wanting to specialize in the rheumy-arts should have to take the meds for a year, so that they can experience first-hand what it's like to not be able to walk when they get out of bed - if they've even slept, or what it's like to try to manipulate a set of keys to lock a house door, or get the car started, etc., etc., etc...

michelefish, think about the *good* things of desert life... no grass to mow... less allergy symptoms (little to no oak pollen, same with mold)... I'm almost certain that you've had less snow than here... lolol - the whole thing of having to explain lupus is universal. You ought to see what *I* get when I tell someone (I'm a guy). If I take a shortcut, so to speak, and just say "arthritis", I'll get the ole "which joint?"... lolol

lovehubby
02-12-2011, 06:08 PM
I agree with you 100% when it comes to doctors and meds. They say take with with food or you just have to deal with it.! But thanks for the thought

rob
02-12-2011, 06:25 PM
Hi Michele,

I used to love living in the desert, until I started having problems due to SLE. I lived for many years in Carefree Arizona, so I know how you feel. Funny that people there would ask about the umbrella. Don't they see that big orange hot thing up in the sky? Next time someone asks, just tell them that the monsoon season is coming, and you like to be prepared!

Rob

BonusMom
02-12-2011, 06:35 PM
It's a double-edged sword, isn't it? Too much sun and you get the rash. Too cold and you seize up like an ice sculpture. With the lung issues, I do better with warmer weather, but if it's too warm, I pass out because the old thermostat's broken and I can't cool myself down. I'm thinking San Diego would be just about perfect (except the high cost of living). Too bad my children, career, hubby, etc. aren't all there.......

lovehubby
02-12-2011, 06:56 PM
Rob you made me laugh thanks I needed that and as for the monsoon season coming what a great answer LOL

jmail
02-13-2011, 09:12 PM
That *is* good, Rob! Don't forget, you can turn that umbrella upside down and catch some of that monsoon rain, and save it for later... I need a come-back Rob for when I wear my "sissy" hat, shades and long sleeves... "You tryin' tah be a cowboy or sumpin?"... I was asked one time "You doin' dope?" and I pulled out my bottles and said "Eee-yup... Want some?"...

BonusMom, if cost-of-living is no object, I vote for Maui... under a shade tree - or in a wetsuit snorkling... I wanna do that again.

magistramarla
02-13-2011, 09:13 PM
Yes, I felt terrible in San Antonio. I think that both the heat and the high humidity got to me.
I'm finding the nice consistent temps and humidity here on the west coast to be just about perfect.
The Monterey Peninsula isn't as warm as San Diego, but it sure is nice!
Hugs,
Marla

BonusMom
02-14-2011, 08:11 AM
When I was 16 Marla, I went to Monterey for the first time to visit a friend from Kindergarten and swore I would live there when I got old (at least 30 ha ha). The area is absolutely enchanting and the weather divine!

Unfortunately, it, too, is too far away from my kids, future grandbabies and workplace, otherwise, I'd be there in a hot minute! Ah, the smell of the ocean......