[manda31]

Hi all,

It's been ages since I visited the forums. I think it must have been just after I had a flare last August and its been quite a journey ever since.

I really need to just vent and get this stuff out. I'm so frightened at the moment!!

After I had my flare last August I ended up getting chest infection after chest infection. I was soooo sick I also ended up getting with Costochondritis in the process. I was put on a round of Prednisone on 2 different occasions because of my chest infection and to top things off I found out just before Christmas I had something called Otosclerosis. Basically I'm going deaf

Just to remind people I've been giving a tentative diagnosis of MCTD.

During all of that illness. . .it was also confirmed that I'm in Premature Ovarian Failure at the age of 31. . .now I'm 32. . .yippee LOL - yeah right.

Plaquenil is still working pretty well for me but it doesn't make life perfect. My joints can only take so much which means I'm still not working a traditional job, and I can only walk so far till the sciatica in my back is killing me. That put such a strain on my families finances that we decided to move back to the USA.

I guess the stress of that sent my entire body into itchy madness LOL which still hasn't calmed down. The flight also seemed to make my feet/ankles and hands balloon with swelling My mother thinks its Edema but I have no health insurance now that I'm back in the USA so its going to be a little while before I find a new doctor.

And if things were already bad enough. . .the skin on my knuckles is hardening - who knows what that is LOL

For the first time since my illness started getting disabling I'm scared. I'm scared that something might happen to me and I have a 9 year old daughter My hormones from PCOS and POF are so out of whack that I'm overweight due to insulin resistance. I literally feel unhealthy, and its as if there's nothing I can do :worried:

I hope everyone will please send me some good vibes or prayers or whatever your thing happens to be!


Manda

 

[Maia]

Welcome back, but sorry to hear of the circumstances that bring you back. You've certainly been through the mill recently, and I think it's a very normal and rational response to be scared by it all. Many things in your post caught my eye - I too had severe chest infections which resulted in a terrible case of costochondritis. I also had bacterial eye infections and ear infections one after the other for a good spell there. It was awful to endure.

For your ear problem, a good friend of mine had that problem back in middle school and had her stapes bones replaced at Mayo with excellent results/improvement in her hearing. Her doctors were absolutely stumped as to why she got that condition so young. They've now lasted her for well over 20 years & she still has normal hearing. I think it took about 5 years since diangosis before they did the surgery b/c they wanted to make sure she was done growing and she still had some hearing left even after 5 years of waiting. Hopefully that will be an option for you too (& I'm thinking of the same condition!).

 

[manda31]

Hi Maia and thanks

When I got diagnosed with the ear condition (which it does sound like the same thing) they told me they wouldn't do surgery until it was very bad off - because of the risks invovled with the surgery. This was in the UK, don't know if it will be different here in the US or not.

That's great that she is doing so well. I was told that a large percentage of the time it just grows right back. Mine is fairly mild at the moment. Though it is annoying when I'm on the phone.

Last night my daughter's bio/father called and I was using my mother's mobile phone. I could hardly hear a thing I asked my mother if there was a way to turn it up the volume, which I did but didn't seem to do much good.

At the moment I'm more worried about all the swelling I'm getting in my ankles especially. It was so bad the night we came home from the airport I was tempted to wake my mother up - it was scary swollen

Seems to have calmed down some as the week's gone on but of course I haven't been doing much. I've got no car or phone at the moment LOL So I've just been stuck at home with my feet put up.

Anyways....I feel like I could go on and on. Guess it just means I really need to talk about all of this stuff.


Thanks for reading on

Manda