Quote from: Alainaluvsu on July 16, 2014, 08:22:57 PM
I really just want somebody to talk to who can understand where I'm coming from. I don't feel like anybody can help me with how to move forward with this in my life and I'm just very scared of facing this. I cannot face this, it's not something I can beat.
I've read some of this, well most all of it and I felt like, I should respond.
I understand the failing health I really do and I understand wanting to give it up I mean the continued fighting just to go another day, the pain, the wondering if it'll get better, will it get worse, the never ending what is, and being told to be optimistic when you rather look at it from the worse case Scenario so your not disappointed if it is the worst outcome.
I feel for the constant stressing, it sucks I'm there right now atm, I go in, in the morning for surgery, the second one in 6 months and one being at work for 3, let me tell a little story, back in 2004 I started having pain, not just any pain pretty serious pain, by the time I was 26 I had became incontinent, the reason at time was I had multiple lying disc's, well I didn't have to money or insurance to fix it, but I trudged on, with help of a few friends and a hobby of fast cars, then my dysphoria kicked into overdrive this was 2012,by this time I had a different job along with insurance and had been seeing Dr's, at this time I made a commitment to get surgery or death, and I decided I'd get srs first, as I was also aware that I needed another surgery(more on that in a sec) I got rid of the toy, I went on a diet as I was about 60lbs to much,
, it seemed my life was on track, well... My Dr's that I had/have (I have 4 at this point, pain, bone, endo, surgeon) started to get into some rather info, or I should say my endo to a interest in multiple red flags that hadn't been see (partially my fault) in December 2012(3 months away from srs) my Dr took bone, blood, and skin samples to send to California to be tested in January 2013 the results came in and have forever changed my life, I have Osteo Genesis Imperfect I congenital and unusable disease, I cried for over an hour in the parking garage, at that moment I felt like the world had ended I didn't know if I could go on, but I picked my self up, and decided to go through with my srs, and yes I got that done, but my troubles weren't over, I was not using arm crutches to move around, I was severely limited in my mobility, I didn't know what was next, I met my bf a few month after srs, he's still with me which as surprised me more than everything, but I was getting worse, now strangely enough my incontinence had gotten better after the surgery but my surgeon did say what he would do might improve that issue, but again I was getting worse I'd fall at home, at work a lot worse, December 2013 I had surgery on my spine, a multi level lamenectomy and discectomy of 4 disc's with no fusion, recovery sucked, it took 3 months, of which 3 weeks in bed, and yes diapers for a short time again
but finally I was able to return to work, however I had permanent nerve damage, so... I had pain,
However as the time moved it seemed I was doing better, but my job was still on the line as I had permanent restrictions because of the surgery and my disease, but it seemed to be getting better, that is until the 24th of last month, I had 2more disc's burst, not just bulge or herniate but actually burst, it happen while I was working however I suppose I had warnings as I had pretty bad pain on Sunday and strong enough pain I went to the effect, but nevertheless I needed my job so I went in on that Tuesday. I guess that was the last straw cause I believe that was when the burst, I collapsed screaming, and crying on the front floor, they had to carry me off the floor my bf had to come get me and, another er trip, this time they wanted to keep me, but I convinced them I'd be better off in my own bed, even though I couldn't even walk at this point. Shortly after the Dr visit, mri I was told what was wrong, and I didn't do anything risky, I followed the rules and to no direct fault of my own, this happened. So here I am awake at 5am and going in for another surgery at 730am, and I wonder to my self whats next, and feel tired of all this, the pain, the pills, the surgeries the pain management, the being so weak and fragile, so I get it, I have thus unusable disease, along with scoliosis now because of it, my spine according to my Dr is a time bomb, in the mri my disc's from shoulders down are all black and many have some bulging, I have asthma, and anemia as well again a gift from this disease I take 13 medications now, including my weekly shot, along with the pain visits every 6 weeks where there give me 16 epidural Injections to numb the nerves. And I wonder if it's worth going on... I feel like all that I'm doing is suffering and being a disappointment, I'm embarrassed as well because I feel like a failure, it hurts so bad, and I'm so scared I don't know what to do...... God Idk what to do, but I'm hanging on, because I think if I gave up I'd hurt my bf, my mom, my brother, and friends as well as the friends on here, I'm holding on because of their love, because at the moment it the only thing I can hold onto and makes me feel worth something
So Alaina, I get, oh girl do I so get it, but please for love hang in there and fight!, and remember you are not alone, and if you want to talk to me pm me and I'll give you my phone number, and if you can't call I'll call you.
So please don't give up, and know I'm here and I understand.
Let's fight this together, Btw I'm 34 years old.............
