email my home address if you are interested ty

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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 2/26/2010 8:21 PM (GMT -7)   
I just wanted to get caught up with everyone. What are your biggest complaints right now? What keeps you from feeling like you can join in with the rest of the world? I was thinking about last year when several ladies got together and had a get together for a short time from around the country. Sadly I can't drive and my oxygen is not cheap on a plane.
So I was just wondering if there are any of us that would be interested in getting together this summer. We all know that it's important to have people in our life that really do understand how we feel. Not to mention I imagine we could put together some pretty wild games to play! I just figured that this is the time to start thinking of the possibility if we could make it work or not.
Of course some of us will be tired but if we don't understand that then who in God's green earth would?
So what do you guys think?
hugs
carol


Lupus lung, maybe, scleraderma maybe, another A/I maybe, Hang nail maybe. COPD
meds to many to fit in my 10 lines. but last count was 28.

 Jesus loves you and so do I!
 
 

Post Edited (okie) : 3/1/2010 10:56:10 AM (GMT-7)


Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 2/26/2010 9:17 PM (GMT -7)   
Just thought I'd say, I LOVE the idea! Don't know how feasible it would be for me...I'm in a VERY poor financial state right now and can't afford travelling at all. The question makes me wonder if we're even in the same country though *L* I'm in Canada, are you here, or in the US or even somewhere else?

-Ellie
It is God that gives me the strength to carry on in the valleys of life and the wings to fly to the mountain tops

<FONT color=#008000>Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Imuran, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 2/26/2010 11:11 PM (GMT -7)   
Hi Ellie, no I'm in Oklahoma. But I know there are alot of people round the country that could travel together. I know it's rough with the finances but I think God can find a way. IMHO.
hugs
carol
Lupus lung, maybe, scleraderma maybe, another A/I maybe, Hang nail maybe. COPD
meds to many to fit in my 10 lines. but last count was 28.

 Jesus loves you and so do I!
 
 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 2/26/2010 11:30 PM (GMT -7)   
I would love it but finances suck right now. Plus I am down to 30mg of prednisone and the headaches are back, I am just wondering how long it will be before the other symptoms return. I really hate doing 40mg pred.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 2/27/2010 1:04 AM (GMT -7)   
Redrose, I am sorry you are having a rough time. Hopfully when the weather changes it will get better for ya. Yes 40 mil. is a lot to me too.
However as for getting together I was really thinking about june or something. Which is 4 months away. These things do take a little planing. My friend owned a motel right down the street from here. It's nothing fancy but hey a bed and t.v. and hot and cold running water. Of course that would be if it was around here. Yeah know pancakes bacon and eggs at the kitchen table doesn't have to cost alot. If you hadn't noticed I have never been in for the fancy stuff. I would be thrilled with wheel chair races! Oh well it's just a thought. I know a lot of us just aren't up for the trip.
I hope you feel better soon hun
carol
Lupus lung, maybe, scleraderma maybe, another A/I maybe, Hang nail maybe. COPD
meds to many to fit in my 10 lines. but last count was 28.

 Jesus loves you and so do I!
 
 


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 2/27/2010 1:26 AM (GMT -7)   
Carol, I'd LOVE to have a wheel chair race with you!! What a blast! :)

Oh well....I probably can't afford it either but it sure is fun to think about!

I was born and raised in California (live in Glendora, CA now) but I lived in Oklahoma for about 5 years once a long time ago. Tulsa, Broken Arrow, and Coweta. Three of my four kids were born in OK, which means they're "Okies" too! :) Whereabouts do you live sweetie?

Redrose, you poor thing! Even 30mg of pred sucks, much less 40mg! I feel for you...I'm so sorry you're going through this. I hope things start looking up for you soon!

Wish we could get together somehow....
((((hugs))))
JoAnn
Lyme Disease, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate

autoimmunediseasesgfliving.blogspot.com


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 2/27/2010 6:06 AM (GMT -7)   
Carol, I think its a great idea and count me in!!!

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 2/27/2010 9:54 AM (GMT -7)   
Maybe we can get some racing slicks on them. I noticed the people in the wheel chairs. Now this is not meant to put them down but I would lay on the bed at the nursing home and these little old ladies would barely get their feet to touch their feet to the floor.  You could see them going click click click click click. lol just moving them little tosies like crazy. some would lift their feet way up and push as hard as they could and fling themselves down the hall way. These ladies were could. We actually need to go to the nursing home and take wheel chair racing instructions from them. LOL you shoulds see them when they get them little footsies going so fast you can't hardly see their feet move . titititititititiititiittitiittiititit LOL LOL LOL
love ya
carol
I guess I'll go take a bad exact I'm awful tired.
that's tirrible
Lupus lung, maybe, scleraderma maybe, another A/I maybe, Hang nail maybe. COPD
meds to many to fit in my 10 lines. but last count was 28.

 Jesus loves you and so do I!
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 2/27/2010 11:17 AM (GMT -7)   
Carol,

Let's see....could I make it an hour and a half drive in June? You bet I can. Count me in!

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta,


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 2/27/2010 12:37 PM (GMT -7)   
Yeah Pat bring your scooter! I know with all of us we could come up with some really silly things to do. Heck if we don't need a good laugh who does? You know some of the cheapest goofiest things we could come up with are the best. You know I would rather not go out and spin money on meals and stuff. We got plenty of time to figure out when and where. I was just kind of thinking that middle country would be better because it's less money and driving. I wouled even be willing to toss in a couple of bucks maybe 25.00 dollars or something. if a few of us could do that we could get a few of us out here that may not otherwise be out able to go. I would much rather chip in a few bucks to help get a friend out here then to eat a steak when burgers will do just fine. Anyway I'm just throwing my feelings out there I'd love to here from others. I know we got others from ok. and surrounding areas here. I kind of had a sneaking feeling you cou could maybe make the trip Pat.:).
love ya
Lupus lung, maybe, scleraderma maybe, another A/I maybe, Hang nail maybe. COPD
meds to many to fit in my 10 lines. but last count was 28.

 Jesus loves you and so do I!
 
 


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1548
   Posted 2/27/2010 3:12 PM (GMT -7)   
Hey Carol. I want to see you, but I have an ambition this year that may interfere. I want (no, I will) to get gastric by-pass surgery. Although I'm "morbidly obese" I'm not at the point that the airlines will make me pay for two seats. They'll just make me pay for "extra baggage." I hope to see you Girlfriend. Love ya! Donna
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Lots of meds.  Donna 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 2/28/2010 1:19 PM (GMT -7)   
I would love to have a "get together". Y'all pray I can get my little bug fixed and i'll come!! Judy

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 2/28/2010 4:23 PM (GMT -7)   
That would be great if you could get with us Judy and Donna. Donna didn't you go last year. It seems like Lynnwood, donna, Barb, and I don't know who else. I wasn't there but I saw a picture. How did that go? I didn't mean it had to be here but It would be kind of nice if it was in the middle of the countries. Since it wouldn't be way up/down or left and right of the country. but I'm fleckable. as long as I can get a flight that has a flight with with oxygen. but heck 3 or 4 months gives us time. I know there will be times when I am to tired to go out to dinner or somthing so why bother making some fancy reservation and just try to force ourself through a meal. It's not like we all don't know what it feels like to be dragging our behind. and no need to apologize to anyone. We could play some games or scrabble and spall all over the floor. Yes I'm a cheap date LOL.
hugs
carol
Lupus lung, maybe, scleraderma maybe, another A/I maybe, Hang nail maybe. COPD
meds to many to fit in my 10 lines. but last count was 28.

 Jesus loves you and so do I!
 
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 2/28/2010 5:17 PM (GMT -7)   
The gathering we had in Atlanta, GA, USA was made up of people in Georgia and adjoining states -- ie driving distance. Barb decided she didn't want to miss out and flew in from further away.

It's best to do all the details, etc via email -- otherwise too much personal information gets out on the forum. We just had 2-3 people as planners, and made some general decisions about where and what inexpensive (and safe!) hotels were closest to where people were coming from.

Just choose a coordinator and let anyone who is interested keep in contact with you by email -- then you can blast all the information, votes, whatever to the people who have expressed interest by sending you their email addresses.

Three cheers for the "Oklahoma Roundup",
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 2/28/2010 6:53 PM (GMT -7)   
Thanks Lynnwood. I was hoping someone with experience would jump in here. If anyone wants to get tgether this late spring/early summer please send me an email from my profile/control panel. This is for all of us so the more ideas the better. I know the economy is rough but we have some time to work on it. Well if it works out it works out I guess we will just have to see how it goes. remember togive me a shout.
hugs
carol
Lupus lung, maybe, scleraderma maybe, another A/I maybe, Hang nail maybe. COPD
meds to many to fit in my 10 lines. but last count was 28.

 Jesus loves you and so do I!
 
 

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