sick from heat - vent

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hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 8/9/2008 5:27 PM (GMT -7)   
I know I've vented about this before, but I really hate when lupus gets in the way of doing fun activities with my kids.  My daughter danced at the Iowa State Fair this morning and then we were going to try to let both kids do some of the fun activities at the fair like rides, games, etc.  It was actually kind of cool this morning but by the time the dancers were all done, the sun was very hot.  Before we even made it to the midway, I was nauseous, exhausted and had an awful headache.  I even covered up and used major sunscreen.  The kids did get to ride a few rides and play a few games, but we had to leave earlier than planned because of how sick I felt.  Luckily my hubby was there too or I wouldn't have managed.  I barely made it back to the car.  My kids were very good about it all, but I could tell my son was a little disappointed.
 
It seems I become more and more sensitive to the sun and heat the longer I've had lupus.  There was also the embarrassment of being drenched in sweat as we were walking around.  I started thinking that if things don't change, I may end up having to be in a wheelchair or scooter for big outings like that.  It just makes me sick to think about doing that.
 
I'm so ready for fall and cooler weather.  I think I'll head up to bed and hopefully with some extra rest tonight I'll feel better tomorrow. Thanks for listening to my vent. 
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Audrey Ann
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Date Joined Jul 2005
Total Posts : 815
   Posted 8/9/2008 6:52 PM (GMT -7)   
How sad, hippi...

I am so sorry to hear your family fun was cut short due to the heat and the sun. I can certainly relate to your situation as the sun and heat wreak havoc with me, too. I hate the nausea and the headachy feeling that comes over me when it is too hot or humid. the sun also gives me rashes - like welts - if I do not have on enough sunscreen (and, even, if I do have enough on sometimes - it is so unpredictable).

Your family sounds wonderful and very loving. Try not to worry too much about this because it is sometimes good for our children to learn that family is important no matter what. Also, your husband is modeling such empathy for your children to see from a father by honoring your illness and taking good care of you.

I am sure you are very tired from this today so I hope you sleep well and can have a better day tomorrow.

My prayers are with you!
Prayers,
Audrey Ann
 
Lupus, RA, and (Maybe) Fibromyalgia and LOTS of Medications!
 


 


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 8/9/2008 8:08 PM (GMT -7)   
Hey Hippi!

Way before we even knew the word "Lupus" . . . we usually brought along my "throne". LOL . . .it was a great lawn chair that rocked or the folding chaise lounge, depending on how I was feeling.

I still bring at lease my own comfy chair and a folding foot stool so I can sit and get my legs up.

If your hubby is with you, you could find a good spot and rest while hubby and the kids go off and do some of their activities. They leave all their junk with me so they don't have to carry the backpacks and all. We do a form of pacing where I'm resting during the hottest and most active part of the adventure.

Example: If we went to the Zoo . . . I would park myself in one of the indoor exhibits for a good while. Its amazing how much longer I last if I take frequent breaks AND stay out of the sun. I also always carry and use a golf umbrella.

I'm SO sorry you are stuck with this blasted situation of making such hard choices with the kids.

We even did our vacationing close to home and usually no more than 2 or 3 days. I just couldn't manage the trip AND the fun. So if we eliminated the long drives, we had more fun.

*sighhhhhhhh* I'm so sorry sis. I know this is hard.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 8/9/2008 8:09 PM (GMT -7)   
Hi Hippi,
 
I suffer the same kind of heat exhaustion that you get too.  It's horrible. I understand how it can wreck a day of fun.  It's not fair.  I also have noticed that I'm not nearly as tolerant to the heat.  Anything over about 72 degrees and I can really feel it.  That's not very hot!  The sweating issues drive me crazy too.
 
It's okay to vent about this Hippi.  I'm sorry you had such a hard time this weekend. We can look forward to the fall and its gorgeous mild temperatures!
 
Love
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Leta
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Date Joined Aug 2005
Total Posts : 590
   Posted 8/9/2008 8:18 PM (GMT -7)   
Hi hippy,

I noticed you have been on prednisone for quite some time. I do know that one prednisone it is known to make you much more sun sensitive and heat sensitive on top of the Lupus. So although it does help the Lupus to some degree, it is a double edge sword. So coming back from your one vacation I think from last summer in Colorado it helped you if I remember correctly (if I did I am in shock yeah ) so it can help with recovery to heat and sunburn) but it can also make you much more sensitive again. It sucks as one way we get better but then we have to avoid the things more that make us sick on top if it.

I am on Plaquenil and it only makes a rare percentage of those sun photosensitive. Well I already am uva/uvb and the house is dark, the Plaquenil actually makes me worst along with my other meds to help me. Wish we could win.

Anyway just a thought, have you purchased some sunscreen clothing? I have found it to really help and it keeps me cooler here in AZ and I thought it would make me hotter.

Leta
sle 01 w/autonomic 11/05, photosensitive 04/04, sjogren's 01, ra 01, fibro 8/05, sinus tachycardia 6/04, asthma 96, multiple allergies 6/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06-gone, TIA 5/06, Porphyria 5/06, Vitamin D def 4/07, Iron def ferritin 8/07, Chronic migraines 01.Meds- baclofen 40 mg, prenatal tabs, potassium, calcitriol 50 mcg, qvar, xopenex, singulair, plaquenil 400 mg, tramadol 400 mg, darvocet 100 mg, percocet 5mg, amitriptyline 10mg, chromagen, topamax 150mg,


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 8/9/2008 8:31 PM (GMT -7)   

Hi Hippie, sorry to hear that your day of fun was interrupted by the dd - I know how disheartening it is to feel "responsible" for affecting the fun and enjoyment of others - such a drain on our souls!  But it sounds like your family supports you and is understanding....that is quite a blessing!  I think it's easier to circumvent the sun issue than it is to deal with the heat.  Maybe a cold compress carried in a thermal (lunchbox style) pouch in a backpack would help.  And I personally think a fan - the old fashioned paper kind, or the battery powered ones - are extremely helpful and easy to carry along.  Hope the weather cools off  and you get some good rest tonight.

Peace,

Lucy


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/10/2008 7:59 AM (GMT -7)   
Thanks so much for the support and the tips for dealing with this in the future. As a family we are still trying to figure all of this out and we talked some yesterday about some different ways to be able to still do these kinds of activities together. I think I felt a little extra guilty because my family has gotten used to me doing a little better and even though I still struggle at times, I haven't asked for much help, so I hated telling them how sick I was yesterday. I am blessd that both my husband and kids are supportive and very caring.

I still feel kind of crummy today with pain and fatigue, but that flu-ish feeling is gone for now.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 8/10/2008 8:51 AM (GMT -7)   
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


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/10/2008 11:37 AM (GMT -7)   
(((((((((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

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/10/2008 6:16 PM (GMT -7)   
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!
 
 
 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 8/10/2008 6:39 PM (GMT -7)   
(((( 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)


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/10/2008 9:28 PM (GMT -7)   
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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/11/2008 7:31 AM (GMT -7)   
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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/11/2008 8:33 AM (GMT -7)   
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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