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a little info about my disability
Posted: Mon Aug 18, 2014 3:31 pm
by Ana
Alot of ppl here know that i often writes about hospitals and doctors and such. I thought it was time to let you all know what im dealing with
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.
Re: a little info
Posted: Mon Aug 18, 2014 3:41 pm
by Krysteena
Gosh Tårn! I've heard of elephantiasis and so I've got an idea of what you're going through, but then again I've no idea what you're going through.

I'm sure us petopians have got your back, so keep strong!
(I'm no one for inspirational speeches, but I try

)
Re: a little info
Posted: Mon Aug 18, 2014 3:49 pm
by Syleye
Re: a little info
Posted: Mon Aug 18, 2014 4:12 pm
by Lupis
Oh wow, I had no idea! I knew you were suffering from some sort of really nasty disability, but wow. That's really rough, and I'm so glad that you're toughing it out and embracing life despite this.
Re: a little info
Posted: Mon Aug 18, 2014 5:27 pm
by Ana
Re: a little info
Posted: Mon Aug 18, 2014 6:27 pm
by Dewclaw
Goodness tarn, you're dealing with a lot.

You are such a wonderful, sweet person, so take heart in the knowledge that you are well loved here and we support you insomuch as we can. I've always wanted to put a face to the person. This post helps a bit. best wishes. <3
Re: a little info
Posted: Mon Aug 18, 2014 6:43 pm
by Lisaara
Get well soon, Tarn!
Re: a little info
Posted: Mon Aug 18, 2014 8:35 pm
by Castile
Oh wow Tarn

you're such a wonderful generous person you deserve all the happiness in the world. Remember it's always the most beautiful that suffer the most <3
Re: a little info
Posted: Mon Aug 18, 2014 11:09 pm
by Jurz
Oh man, Tarn, that's some serious stuff. I'm glad you're able to stay optimistic though <3
Re: a little info
Posted: Tue Aug 19, 2014 5:54 am
by Varethyn
Tarn, you're one of the best people I have ever met. You're sweet and kind and funny, and most certainly don't deserve the BS you've been put through

You deserve so much better and I am amazed you've managed to stay so positive despite it all. It's people like you who make the world a much more tolerable place to live in. Everyone here loves and respects you. Just hang in there

♥
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!
Re: a little info
Posted: Tue Aug 19, 2014 6:40 am
by Ana
Well if you insist you can always buy my husband and me our prerelease of draenor
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
Re: a little info
Posted: Tue Aug 19, 2014 7:13 am
by cowmuflage
Well it takes a strong person to have that kind of shit happen to them and be as nice a person as you are :3
Re: a little info
Posted: Tue Aug 19, 2014 7:23 am
by Wain
Oh wow, Tarn, thank you for sharing that. It sounds like you're lucky to be in a supportive environment to help you. I hope one day they can find a treatment that works for you. It's a good sign that your ancestors are long-lived though, that's an important factor and hopefully you're as tough as them!

*hugs*
Re: a little info
Posted: Tue Aug 19, 2014 8:05 am
by Niabi
I'm going through a real hard time myself these days with my health so I feel like I can relate to some of your frustrations in a way. I also know what it is like to have to deal with ignorant medical professionals! I'm right there with you girl! Sometimes I feel so alone with everything going on in my life, I just want to reach out for some support or just have someone to talk to. I know you don't know me that well but if you ever want someone to laugh with, yell at, cry on, whatever ... please feel free to PM me, ok.

Re: a little info
Posted: Tue Aug 19, 2014 9:16 am
by Falcon
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.
Re: a little info
Posted: Tue Aug 19, 2014 10:30 am
by Ana
Falconcrest 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.
You did great sweetie
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...

Re: a little info
Posted: Tue Aug 19, 2014 5:51 pm
by Falcon
Thank you, Tarn.
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.

Re: a little info
Posted: Tue Aug 19, 2014 5:59 pm
by Ana
i got an excellent bath chair which can turn
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?
Re: a little info
Posted: Tue Aug 19, 2014 7:11 pm
by Falcon
I've never heard of a chair like that, but I admit that it kind of looks a little intimidating, what with me being small (I'm 5'4.5" tall). It also looks pretty expensive, so I wouldn't be able to afford one till my boyfriend and I are more financially secure than we are currently. But I appreciate you telling me about this.

Re: a little info about my disability
Posted: Sat Apr 18, 2015 3:44 pm
by Ana
Welp time for a little update..
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
