living in the desert with thal

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Offline desertthal2

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living in the desert with thal
« on: January 31, 2007, 10:49:39 PM »
hi everyone :)  i am a 27 year old mother of 2 girls, ages 4 and almost 2, and all 3 of us have thalassemia.  we live in the hot california desert, but not by choice.  my husband is in the marine corps :)  anyway, we are dealing with an irritating situation dealing with doctors and trying to get them to understand thalassemia.  maybe i just don't know all the facts, but my dr. is refusing to believe that there is any connection between the immense heat out here in the desert and it's affects on people with thalassemia.  we are currently living in base housing that only has a swamp cooler.  anyone who has lived in such a hot climate knows that swamp coolers are not very efficient.  anyway, we have been trying to get on a new list for base housing that have air conditioners.  we are jumping through hoops trying to get paperwork signed and get dr's orders signed to allow us to get on this list sooner before the heat kicks in sometime next month.  i have been searching for proof all over the internet to take to my dr. to avoid arguements over this and to finally put him in his place, so to speak.  unfortunately, i am coming up empty handed.  is there anyone out there who understands what i'm talking about and who could point me in the right direction to help my arguement?  does heat really make a difference for people with thal or is it just me?????    please help me!  thanks a lot :)  take care 

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Offline LWSpevack

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Re: living in the desert with thal
« Reply #1 on: February 01, 2007, 02:04:22 AM »
Well, if the base will accept testimonials ... count me in.  I live in Houston and heat is always a consideration in planning my day.  I have a threshold that if ignored, puts me bedfast and severely nauseated for 24 hours before life slowly returns to normal.

And, like you, the doctors cannot explain it, but refuse to consider Thalassemia as a contributing factor.  Normal people know to bring a sweater to my house as I control the thermostat and anything above 72 degrees is not a topic for discussion.

Good luck in obtaining the base housing and thank you for the sacrifices your family is making to the security of our country!!!

Lloyd
 
If you don't live for something ... you'll die for nothing.

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Offline Andy Battaglia

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Re: living in the desert with thal
« Reply #2 on: February 01, 2007, 03:29:41 AM »
Almost every thal I have known complains about the heat. Lisa was always hot. I was often surprised to see how lightly she dressed even in the dead of winter. I believe it is related to the heat given off by the destruction of blood cells (hemolysis) in thalassemia. Because of the excess number of cells being destroyed there is an abnormal amount of heat produced. This occurs even in minors as the small misshapen blood cells are removed

This topic comes up regularly. I even ran into a post of Danielle's at our old MSN site where she talked about wearing t-shirts even in cold weather.  I do wish doctors would learn to listen to patients. It might make them more aware of what problems patients have in the real world.
Andy

All we are saying is give thals a chance.

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Offline §ãJ¡Ð ساجد

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Re: living in the desert with thal
« Reply #3 on: February 01, 2007, 06:43:53 AM »
Yes, count me in too if you have any petition to sign on this regard.

I am Thal. too and have a hard time in the summer. It causes various troubles to me such as nose bleeds because of the dry heat and a hard time breathing when it gets hot and humid.

Apart from that I guess it is totally insane of them to deny you facilities if they can provide em.

Good luck in convincing your doctor.

Take care, Peace!
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Offline Danielle

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Re: living in the desert with thal
« Reply #4 on: February 02, 2007, 08:41:50 AM »
Hi DesertThal!  Welcome to our group!   ;D

All I can say is we should have all these skeptical doctors come to this board, so they can see with their own darn eyes that these things are actually true.  Most Thals that I have spoken to have this same kind of heat intolerance.  I have it as well, and wear short sleeves when it's snowing out.  I've been feeling more cold lately, though.  I don't know if it's just me getting older or it being colder out.  No idea.  I just think these "know-it-all" doctors should visit this site and see what Thals actually have to say, instead of going by their books and lack of knowledge on the issue.   :rolleyes

Sorry, it just really aggravates me when doctors don't take the patient's word for something.  Are we stupid?  Do we not know what's wrong with our own bodies?  I think not.  :whyme

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Offline desertthal2

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Re: living in the desert with thal
« Reply #5 on: February 02, 2007, 05:36:24 PM »
thanks for all your understanding and support  :)  it's nice to know that this isn't all in my mind.  i have an apt. with my dr. on monday and i think i will give her the link to this website and tell her to read it over......  the dr. that isn't being understanding is my kid's dr.  he's just one of those guys who goes by the book.  i know that he's doing the best he can as a dr., but sometimes there are just people who don't have "textbook" cases and need to be treated accordingly.  like you said, we are the only ones who know our bodies and no one can really understand this desease until they've lived with it.  and i've been living with it for 27 years, my mom has for 55 years, and my grandparents for 80+ years and they think we don't know what we're talking about? 
we have had some good luck though with the base.  they are putting us on a program called the "exceptional family member program" so that once all that paperwork is filled out, we can get on the list to get in the air conditioning houses.  i'll keep you posted on what happens :)  again, thanks for all the support guys, it makes me so happy to know that me and my girls are not alone :)  take care!

Re: living in the desert with thal
« Reply #6 on: June 29, 2007, 07:51:18 PM »
Hi everyone. You can definitely chalk up one more thal minor who ALWAYS feels hot. Gets rather annoying to have to answer the question "aren't you cold?" every day in winter and sweat like a pig when everyone else is enjoying summer! Have to wear short-sleeve dress shirts year-round in my office.

I also asked my oncologist that diagnosed me with thalassemia if always feeling hot was one of the symptoms associated but she would only give me a 'maybe.' I'm surprised so many doctor's either don't know or don't want to tell us that they're related. But I'm certainly glad I found this board so I know I'm not alone!

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Offline §ãJ¡Ð ساجد

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Re: living in the desert with thal
« Reply #7 on: June 30, 2007, 05:08:20 AM »
Hi nemisis,

:welcome to the site.

I hope you will find it very useful. Please feel free to ask any question that you have in mind. I'm sure that you will find all the memebers very friendly and helpful.

Take care.
اَسّلامُ علیکم Peace be Upon you
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Re: living in the desert with thal
« Reply #8 on: June 30, 2007, 10:04:49 PM »
Yikes. I live in Santa Monica and driving downtown to work is a drag on a hot day...Anyone with anemia hates the hot weather. Heat promotes RBC destruction too and it dehydrates us. If you need a consultation, consider calling Children's Hospital in LA (they also see adults for thal) and they are one of four major CDC centers for Thalassemia in the US. You would need to see Dr. Coates or one of his excellent RN's.

Re: living in the desert with thal
« Reply #9 on: July 31, 2007, 07:40:31 PM »
Earlier this year I read an article on the Internet about tennis great Pete Sampras and his coping with Thal Minor. Pete mentioned that he had had problems--it was difficult for him to play in the heat. I don't remember where I read the article. However, another article, Wikipedia's article on Pete, mentions his thalassemia, and his reluctance to let people know about it. He's been open about it since he's retired.

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Offline Andy Battaglia

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Re: living in the desert with thal
« Reply #10 on: July 31, 2007, 08:00:54 PM »
Yes, that's true. Sampras didn't want opponents knowing about him being thal minor as they might use a stalling method of play to tire him out if they knew. His strategy was to dispatch opponents as quickly as possible to conserve his energy. It worked and he was one of the top tennis players of all time. He has been open about thal since retiring. I wish he would choose to be more of a spokesperson for thals. We could really use the help of more celebrities in publicizing thal.
Andy

All we are saying is give thals a chance.

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Offline Moik

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Re: living in the desert with thal
« Reply #11 on: May 16, 2010, 09:10:02 PM »
Tally another one to low heat tolerence..

my anxiety is coming back also due to many many stressful things going on

anxiety can cause hot flashes which ive experienced in full today
« Last Edit: May 20, 2010, 08:14:14 PM by Moik »

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Offline Andy Battaglia

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Re: living in the desert with thal
« Reply #12 on: May 16, 2010, 09:31:10 PM »
Make sure you stay well hydrated and eat something salty if your mind starts to feel cloudy. Anxiety can be a product of physical problems that have nothing to do with your normal stability. Speaking from my own experience with heat.
Andy

All we are saying is give thals a chance.

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Offline Dori

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Re: living in the desert with thal
« Reply #13 on: May 16, 2010, 09:38:24 PM »
This is always a very interesting topic for me and I plan to ask my network about it.
My friends are always dressed like it is summer, but being a pkd'er I just have it always cold. I dunno of it is just my strange body or common under pkd.
Shall I reveal a secret? I will attend a thal camp this summer and after my apply they told me it is gonna be 45C!  :noway I have always said I love the heat, I feel better and need less transfusions (told you I had a weird body), but 45C might be a bit too hot...?  :scratch

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Offline Prets

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Re: living in the desert with thal
« Reply #14 on: May 17, 2010, 04:53:54 PM »
Make sure you stay well hydrated and eat something salty if your mind starts to feel cloudy. Anxiety can be a product of physical problems that have nothing to do with your normal stability. Speaking from my own experience with heat.


I always feel very warm/hot/overheated!  If i've done some work and I'm tired, then I can even rest in the freezing cold AC temperature and feel like I'm inside a furnace!

Summers are unbearable with my dizziness and daily migraines. I take the salt sugar solution before i step out even in the evenings. Or the ready to drink electrolytes solution. Taking several showers helps a lot, even though its temporary. and yes i tend to get anxiety or irritated fast when i'm in a lot of discomfort.

Wish there was an easy solution for this - where we could 'feel' normal!

:-)
Symptomatic Beta Thal Minor.

 

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