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I suppose it's time to tell everyone about me, i waited a bit because i just don't want to sound like I'm whining or complaining. as it normally sounds when i tell people fact about how i feel maybe it has more to do with their perception because they aren't accustomed to what i feel, or think I'm just exaggerating. whatever the case it shouldn't hold me back from gaining some support and I'm taking the leap. =)
First off my name is Tam I'm 27. i live in Canada with my wonderful fiance and in 6 months my first child barring any unforeseen circumstances that is.
I am hyper flexible due to a lack of connective tissue, possibly elhors danlos syndrome wanted to get that checked but the test is expensive and it's not as though they will be able to do anything for it other than the things i'm doing now. like exorcise and eating well. both my mom and brother both have symptoms of this as well. but i have the worst of it. most my joints spontaneously can go out but i have learned to put most of them back myself but the constant movement is starting to cause arthritis.
I broke my jaw when i was two and had surgery when i was 15 to lengthen the bone, it hit a nerve and its mostly numb but in the joints i have arthritis in my jaw. between that and the lack of cartalige in my ears has made me lose some of my hearing. i have a hearing aid for my right ear but it doesnt hold in place well due to the lack of cartalige so i just skip it and lip read alot.
I also have interstitial cytitis it has similar symptoms to overactive bladder but can be quite painful because if i have the wrong ph in my bladder the lining actually sheds.
I also have IBS-C (now that im pregnant it has calmed a lot.)
I have poly-cystic ovarian disease as well. it caused abnormal weight gain and added stress on my already weak joints. as well as insulin resistance due to the weight. I am on metformin to address all of the symptoms from it at once, i lost 50lbs and it normalized my blood sugars and my hormones to where i was able to get pregnant after years of trying. =)
my blood pressure also is slightly elevated but what worries me is without my bp med my heart rate is about 120 resting. (and i cant take it during my pregnancy =/ ) i also retain alot of water.
Also i have been diagnosed as bipolar and i'm coming off those meds as well but the pregnancy has leveled me out a bit anyhow. the problem is those meds also are crossovers for my bladder condition and my ibs as well as any nerve pain from my hyper flexible joints.
as my guy says I'm just broken teehee. but I'm working on fixing that through diet and exorcise mostly. will be swimming alot this summer. if physio wasn't so expensive i would go there once a week to strength train my muscles so they can do the job my joints are supposed to.
anyhow thats what i have to contend with everyday it's not as intense as a lot of your guy's pain though its a lot of different pain. I really commend you all for how well you cope. I envy you all i just about lost my mind going back and forth between the doctors before i was finally diagnosed properly.
Thanks for the ear and the shoulder in advance
Tam
Take care all.
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