Posted 8/10/2008 10:51 AM (GMT -6)
Hippi, my heart goes out to you that such an important day was not only cut short but was so hard on you. I hope that knowing that your daughter had a great day is of some consolation.

And boy can I relate to you. I've been on vacation and have had to ask the waiter to bring me a wet washcloth filled with ice. I get so red and sweat runs off my face and body. Talk about embarassing. I found some $1 fans at a local store and bought several so I can carry one with me. I beg off many outings with my DH and grandkids but you can't do that with your children. I cannot wait for winter to get here. I knit scarves, shawl, and sweaters, but give them all away because even in the dead of winter I can't wear any of them. It's awful, Hippi. Do your legs give out on you too? I've wondered where we can get a cane that turns into a little seat and think I'll search for one on the web. When I shop I lean on the shopping cart, and while I'm not ready for a cane, on long outings, I think carrying a little seat would help. Some others here have had some good ideas. The icepack was a great one.

I hope you send pics of Abby dancing.

Love ya,

Pat
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

Posted 8/10/2008 1:37 PM (GMT -6)
(((((((((HIppi))))))))))))) I know how you feel as far as being extra sensitive this year to the sun and heat. However, I do not have children. I think that must make it so much more of a challenge to deal with Lupus on many levels. You are in my prayers, Judy
Posted 8/10/2008 8:16 PM (GMT -6)
Oh Hippi, I know how much you do for your family. I'm sure they know that you are doing everything you can. Getting out of there was the best thing you could have done. If you had stayed any longer you would have gotten even sicker.
They do make those cool wraps that you can take along and nt activate unless you need them. The troops use them in Iraq. so they help up to 120 degrees. I know the weather has always been an issue for you. Just like it is for me but I'll be the one saying I wish summer would ge here because the cold usually lays me out flat. and hey I'm with Rosie, get a chair. Shoot I would love to have one with a motor on it. Even if I wasn't sick. You know the ones they have at the grocery store? I was riding one of them one day and the rear end slid out from the back of it. (the chairs not mine) WHEWY that was a blast!
I hope your feeling better
love ya
carol
God Bless
Possible sclero.  stage 4 COPD w/CHF,   Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 

Posted 8/10/2008 8:39 PM (GMT -6)
(((( Hippi )))) I am sorry your family time was interrupted by lupus! I am just like you, I have no tolerance to the sun / heat anymore. I get that same nauseated, weak feeling with a headache to boot. You have such a great supportive family!

I understand what you mean about sweating. Here lately I sweat A LOT even around my house..... and that's unusual for me! I am sure it's a lupus thing. I have also had the thought about a wheelchair, I don't like it but I know it may be in my future especially for long outings outside, etc. There are times when I could use it at Wal-Mart.

Take extra good care of yourself! Hugs and love
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Davocet (as needed) and magic mouthwash (for mouth sores)

Posted 8/10/2008 11:28 PM (GMT -6)
Sorry to hear about your fun being cut short. The sun is especially bad this year I think. Maybe the air in Beijing has something to do with it? So we give them our factories so they can pollute shamelessly. Ugh. I'm so disgusted. I'm so sick of free trade being used to skirt environmental standards. I've been doing everything at night. Maybe you can do things at night. The rides are often more fun for the kids when they are lit up. And during the day, you can go for as long as you can stand, and then take off and have hubby or another family member or someone stay with them during the day for those few hours?

I know it's impossible. The sun comes up and we want to do things. But I step outside and I swear smoke comes off my skin and it sizzles. I feel like a vampire. They make a personall cooler thing that is like an ice pack around your neck. Those things help some. I have a little fan too. At the fairs I've been to, there is an inside part with food where you can sit and I hang out there when I get tired and I have a rolling walker now which helps because I can sit on it when my legs get bad. And I can rest my purse on it when I'm walking.

I hope things get better for you, but I think it's the plaquenil mainly for me. It's just made me very sun sensitive.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

Posted 8/11/2008 9:31 AM (GMT -6)
Hippi, I was looking around online and found a great chair that we should all have. It's called a backpack canopy chair. I know we can't advertise items here so I'll email the site to you. It's your basic camping chair with cup holders, and has an added canopy that gives your head and back protection from the sun. It won't protect you from the heat but will keep the sun off you. I'm going to order one. I hate going to events and having to look for little bit of shade under a tree somewhere. Invariably I have to stay away from my family or the rest of the crowd. I refuse to sit in the sun for even 5 minutes. That chair plus a handheld fan might be just the ticket. And if I look like a weirdo, so what. It will be better than sitting at home by myself. It's the kind of thing that I'll leave in my trunk all the time. I just love it. Hint: If you'll google the name, you'll find it.
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

Posted 8/11/2008 10:33 AM (GMT -6)
Actually it's called an Everywherechair. I just ordered one.
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

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