a little info about my disability
- Ana
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a little info about my disability
Im suffering of a variant of all the known 4 types of elepahntiatis. (http://en.wikipedia.org/wiki/Elephantiasis). On top of that my corticosteroids (i used google translate for this as i have no idea what binyrebarkhormoner is called in english so i hope the translation is good) produces 9-15 times more than a normal human being which leads to a massive increase in weigth. I weight around 175 kilos now and can only look forward to my brain putting more pounds on as the months and years go by.
I have done EVERYTHING i can to counteract the weight gain.. i even had a gastic bypass without any luck. My back, my legs are what is hurting the most. I can hardly walk or stand. I can walk around 100 meters and stand a maximum of 5 minutes.
On top of that i had a fall injury last year where i torned 2 of my legiments and 1 crosslegiment in my knee. Due to my overwieght i could not succesfully be operated on so my knee is not fixed. It hurts daily and i have to take alot of painkillers. The leg injury further reduced my ability to be mobile. i got hypermobility which means I tend to turn my foot and turn my legs and knees in the wrong direction, so I fall or get injuries
The doctors are sometimes a bit harsh and telling me that i can just loose wieght which is impossible.. belive me i tried. Some doctors are more understanding than others... but most of them are.. ignorant.
I have been a really heavy girl since i was 10 and have been in all kinds of hormone and diet treatment since that. For each generation the disability is worsening. I cant have children so there are no chance of my offspring being worse off than i am.
Despite my illness i managed to mentain a good mental stability... though on dayes with doctores being ignorant that stability gets weakened alittle bit
Im 36 years old now and the doctors dont think im gonna live very long due to my size... but its a hereditary disease and all my ancesters who have suffered from the disease have all come closed to a 100 years so i hope they are wrong.
Im lucky that i found a husband who love me despite all of this and who have stayed with me for over 18 years.
I feel lucky and loved most of the time and usually i got a good mude and a brigth spirit. Bad days can happend but luckily they dont last for long.
I just thought you would like some info on why i often write about hospital and doctors and stuff.
HUGE thanks to Makoes, Syleye, FeralClaw, Pingupuff, Karin,Bowno, Varethyn, Ashaine, Kishay, Aki (Täräin13), my friend Marie and some lovely ppl on Fligth Rising for my lovely sig
- Krysteena
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Re: a little info
(I'm no one for inspirational speeches, but I try )
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- Lupis
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Re: a little info
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- Ana
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Re: a little info
Thanks all. I have first told it now because i dont like when ppl feel pity for me.. but on the other hand it is good for friends like you to know that sometimes i might be away at the hospital because of this disability.
You all warm my heart more than words can say.
HUGE thanks to Makoes, Syleye, FeralClaw, Pingupuff, Karin,Bowno, Varethyn, Ashaine, Kishay, Aki (Täräin13), my friend Marie and some lovely ppl on Fligth Rising for my lovely sig
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Re: a little info
http://flightrising.com/main.php?p=lair ... e&id=21632- Flight Rising
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Re: a little info
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Re: a little info
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Re: a little info
Everyone: I want to give Tarn a present to show how much I care and hopefully cheer her up. It would be even more amazing if we can all pitch in somehow. Please, please send me PMs with your ideas!
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Rest in peace mum. I really did love and miss you, even if I never got to see you.
- Ana
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Re: a little info
grin - just a joke though. I never never never never play on my disability to get stuff
my mude is way better today so i just wanted to thanks you all.
My disability suuuuuuuuuuuuuuuuuxs but im very blessed in RL and on here as well with so many kind ppl.
What hurts me the most is when i go shopping, in the movies with my husband or just go out the door alot of ppl yells profanitys at me because im at the size and shape i am.. so i tend to just stay indoors where im sourrounded by loveing family and online ppl cant see me which helps
My mude is going to be better.. 3 months until i have to face the doctors again... unless i have a seizure.. so i hope i can wait 3 months
HUGE thanks to Makoes, Syleye, FeralClaw, Pingupuff, Karin,Bowno, Varethyn, Ashaine, Kishay, Aki (Täräin13), my friend Marie and some lovely ppl on Fligth Rising for my lovely sig
- cowmuflage
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Re: a little info
Heres my DA page
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Re: a little info
- Niabi
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Re: a little info
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Re: a little info
I know we've never really spoken, but I want to tell you that I admire how strong you are in dealing with such a disability. You're also very lucky to have such a wonderful husband and family, and I'm sure that they will be the main reason for you living a long life. I myself suffer from rheumatoid arthritis, and have since I was twelve, plus, I was raised in a bad environment by an abusive family who treated me as a scapegoat, so my family is pretty much the opposite of yours. I honestly wish I could be as strong and positive as you are. Keep at it, Tarn, never give up! And all those people who say those things to you when you go out in public? Ignorant idiots, the whole lot of them. They don't know who you are, otherwise, they wouldn't say such things to someone as kind as you are.
I'm... sorry if this doesn't really help, I'm not exactly great at giving encouragement, but as a fellow Petopian who's also disabled, I wanted to try.
- Ana
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Re: a little info
You did great sweetieFalconcrest wrote:
I know we've never really spoken, but I want to tell you that I admire how strong you are in dealing with such a disability. You're also very lucky to have such a wonderful husband and family, and I'm sure that they will be the main reason for you living a long life. I myself suffer from rheumatoid arthritis, and have since I was twelve, plus, I was raised in a bad environment by an abusive family who treated me as a scapegoat, so my family is pretty much the opposite of yours. I honestly wish I could be as strong and positive as you are. Keep at it, Tarn, never give up! And all those people who say those things to you when you go out in public? Ignorant idiots, the whole lot of them. They don't know who you are, otherwise, they wouldn't say such things to someone as kind as you are.
I'm... sorry if this doesn't really help, I'm not exactly great at giving encouragement, but as a fellow Petopian who's also disabled, I wanted to try.
My mom and dad are a whooole different sotry but i am lucky that i got my husband who loves me. I can never understand why he does but im very very apprciative that i found someone like him to share my life with
I have arthritis in my knees and joints so i know how painfull it can be. I will pm you and Niabi so we can talk more private .
I hope you can find someone who can support you becauser heumatoid arthritis is painfull. I swim in a hot water bassing once every week and that help on my arthritis but then again its just ordinary arthritis...
HUGE thanks to Makoes, Syleye, FeralClaw, Pingupuff, Karin,Bowno, Varethyn, Ashaine, Kishay, Aki (Täräin13), my friend Marie and some lovely ppl on Fligth Rising for my lovely sig
Re: a little info
I'm sorry to hear that about your parents, and your husband loves you because he's an amazing person who sees you for you and looks passed what's on the outside to the beauty on the inside. (And I'm sorry if that sounds really mushy or weird or both, but I've noticed that people who lead hard lives seem to have beautiful souls compared to those who have it easy, or maybe it's just me.) I just replied to your PM, and again, I'm sorry it took me a while. @_@
I've got my boyfriend and his family, who try to include me in their activities to make up for how my own family treated me growing up. It can get rather overwhelming, though, since I'm not used to it. Unfortunately, I can't take proper baths due to the way our tub is (I tried taking a bath in it once after we moved into our house last summer, and it was so hard getting back out again), so I'm stuck to hot showers.
- Ana
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- Joined: Mon Jan 11, 2010 2:19 am
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- Location: Copenhagen- Denmark
Re: a little info
it can support up to 300 kilos and you can lie down too! Its excellent and helps me alot with taking baths.
I got noo clue about the brand.. we got it from a friend who works with the elderly but i found the picture on google so it must be a known brand.. i dont got a camera so i just goggled it
Before we got that one.. i had to sit on a regular chair next to the bath tub... maybe one like it exsist where you live?
HUGE thanks to Makoes, Syleye, FeralClaw, Pingupuff, Karin,Bowno, Varethyn, Ashaine, Kishay, Aki (Täräin13), my friend Marie and some lovely ppl on Fligth Rising for my lovely sig
Re: a little info
- Ana
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- Posts: 18668
- Joined: Mon Jan 11, 2010 2:19 am
- Realm: Light EU Twintania/ Azol-Nerub EU
- Gender: Female
- Location: Copenhagen- Denmark
Re: a little info about my disability
Long story short.. im doing worse.. my weight is now 418lb 14.1oz (190 kilo). And thats with the medication they are sticking into my bone marrow to make my body loose weight. The injections hurt like hell but luckily ive only got one to go. As they dont seam to work the doctors dont know what to do and they are worried that i might not be around for much longer... but i do plan to prove them wrong.
I still try to look at the positive things in life. I DO feel sorry for myself sometimes but most of the time im happy and at peace. I cant change my condition but i can change the quality of my life I want to be happy and fill my life with joy and the people i love
Just a short update
HUGE thanks to Makoes, Syleye, FeralClaw, Pingupuff, Karin,Bowno, Varethyn, Ashaine, Kishay, Aki (Täräin13), my friend Marie and some lovely ppl on Fligth Rising for my lovely sig