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.............

Quote from: Rainbow Brite on July 17, 2014, 10:50:40 PM
I can't take losing yet another friend. First, FA, then Melody.

not to derail the thread, but what happened?

Seriously... what a day.

So I still can't walk. I'm at LSU in a room. Let me tell you how I got to this point.

We started to drive here at 11:30 or so. On our way, the drawbridge was up. So we decided to take a detour (my roommate was driving). We got in an undesignated turn lane to turn right, and BAM! A dump truck turned right into us from the lane next to us and takes my bumper off. He is still going until people at the bus stop yell for him to stop. We are okay, but the truck driver jumps out and starts talking about how he had his blinker on (he didn't).

So here we are, two white transsexuals in the most ghetto part of the lower 9th ward waiting for a cop. While we're waiting, a guy I have been talking to offers to come wait with us (I told him to come on). I'm so freaking out at this point. Like I'm ready to go home and end it. I'm thinking: I have no uninsured motorist, no collision, and that wasn't a designated turn lane that we turned in. I'm like, ->-bleeped-<-ed. I'm ->-bleeped-<-ed until there's a broken tail bone ->-bleeped-<-ed.

Well, the cop promptly shows up 2 hours later (NOPD doesn't have the fastest response times in the best parts of town, let alone in the lower 9th). Luckily, I find out that 50' before an intersection, the margin is a turn lane. Oh but there's more. Not only does the guy get cited for an illegal turn, but his trucks registration is expired, he has no medical insurance, AND his CDL is expired!!! Needless to say I'm calling an ambulance cha... I mean a lawyer that I used to do work for and I'll have my bumper fixed for sure.... The cop gives me my info back (including my registration which is under my old name), and asks for (my old name)'s contact number. (Ha!)

So after a brief meltdown and then some relief (to say the least), I'm on my way to the hospital. We check in around 2:30 (yeah, it seriously took 3 hours to get 10 freaking miles thanks to the wreck). Triage takes me back to get my info (I don't have periods. Why? Because I'm transgender) and I sit. And I wait. And I wait. And I wait.... And I ... give blood around 7:30. Then they take me back to the waiting room and I w.... um go back to my room 10 minutes later (the hell?) I go to my room. And I wait. And I wait.... (LSU blows)... and then I get asked my history around 8:45. Then I get asked again. And I wait. Then a doctor asks me my history and try to get me to walk (fail), and does this follow my finger routine (fail).

They try to take a urine sample around 9:30, and I tell them it's not coming. I ask why they want it, and the nurse said to check for pregnancy (facepalm). So I tell her to come closer, and tell her that I'm transsexual. She goes "So you don't have ovaries?", I tell her nope, and she takes everything away. A resident comes back and wants to stick his finger in my butt (to check for "rectal tone"). So I tell him that I'm transgender, and not to be shocked, he said "Well, thanks for telling me, because I would've been surprised, but that's nothing I couldn't handle".

They're kinda scratching their heads at this point, so they send in a couple more doctors to ask me the same questions and test the same functions they have been testing (pushing on my feet, etc). And I wait... and I wait.... and by 11:00 I'm going to get a CT scan. ..... and I wait.... and I wait.... and I wait.... and finally around 1:00 (am) or so the neurologist comes and talks to me. And asks me the same questions and test th.... (eye roll). He goes away, comes back and asks me why I'm taking Aldactone (ffs, seriously??), and I tell him because I'm transgender and he literally says "Hmm... well you did a good job covering that up, that's the second time this week I didn't know..." THIS IS MY FREAKING NEUROLOGIST!!!!!!!

So I wait.... and I wait.... and around 3:00 (am), they come back to tell me that my CT was negative, they weren't "too impressed" with my MRI findings being a venous malformation, that they're very interested in finding out what's going on. They tell me that they're going to transfer me to a room and question me and test my functions every 4 hours. Then, sometime today I'm going to get an MRI on my spine and a SPINAL TAP. Just so you can get this straight, they're going to interrupt my sleep all night and then have me sit in a loud ass machine for like an hour or two, THEN stick a needle in my SPINE that could PARALYZE me if I move or if they twitch.

The nurse that was helping me in the ER was so cool. She had been trying to bend rules for me the entire time (They all let my guy friend stay as a visitor the ENTIRE time, which they shouldn't have done). The hospitals policy is to stick sexes together in rooms. This means that I would be paired with a guy. I told her I'd rather be paired with a girl, and she goes to see what she could do, but she'd have to tell the nurse that would be looking over me what's going on with my gender. Well, that didn't fly, but it did get me a room of my own (even better!!) So I wait, and around 4:00 (am) they go to move me to a room. The big fat nurse is talking to my ER nurse and I hear "That's her??!" and they go silent, and I see a surprised look on fat nurses face.

So here I am, laying in bed in my room. Hours go by, and my friend decides to leave. So I decide to get some sleep. Yeah, right. First of all, I'm more concerned about this ->-bleeped-<-ing massive needle that's going in my back. But more distracting, is this stupid monitor that tends TO BEEP CONTINUOUSLY if I bend my arm a certain way, and I need to get a nurse to shut this stupid ->-bleeped-<-ing thing up. So every time I go to get comfortable to go to sleep, this stupid ->-bleeped-<-ing thing beeps continuously. And the stupid ->-bleeped-<-ing ghetto nurses don't do a good gosh damn thing about it. It takes them minutes to respond to shut it up (as in like 20 minutes). My quality of life dropped dramatically since ->-bleeped-<-ing ghetto nurses took control.

I guess I should look at the bright side though, I got a room looking RIGHT at the Superdome!!!

Kill me. I'm done with my life. Seriously

Seriously?
If you can't handle this, just wait till you're flat on your back on the second floor of the GRS recovery ward 'cause it took an hour to get the doctor while you were literally bleeding out through your brand new vagina, and then they asked you to stand and walk downstairs to go to the next door hospital, and you fainted five seconds after standing up.

Or till you discover that the pain of walking is just about an eight, and you have to do it (with stairs) three times a day every day for a week and a half just to eat.


Things happen. Keep positive and endure. Things will get better - believe me they will.

Quote from: Alainaluvsu on July 18, 2014, 07:05:47 AM

Kill me. I'm done with my life. Seriously

Stop being selfish.

Nope we will not kill you . We are not done with your life. Seriously 

You have too much to give and to gain. From the posts I have read from you with the advice contained goes to show that you are far more than the stuff posted within this thread. Use your strength and be patient.


I am talking as someone that has been clinically dead, has been paralysed from the neck down due to a spinal cord injury and spent 7 months in a MENS ward on a rehab unit learning how to do stuff again. The stuff you are experiencing now I deal with on a daily basis and have done for the last 7 years, yet after all the crap that surrounds it I still find soo much wonder in this world and I still continue with my journey.

Stay strong.

Nikki

Quote from: Alainaluvsu on July 18, 2014, 07:05:47 AM
Seriously... what a day.

): sounds awful

Quote from: ZoeM on July 18, 2014, 08:02:29 AM
Seriously?
If you can't handle this, just wait till you're flat on your back on the second floor of the GRS recovery ward 'cause it took an hour to get the doctor while you were literally bleeding out through your brand new vagina, and then they asked you to stand and walk downstairs to go to the next door hospital, and you fainted five seconds after standing up.

Well MOST of it is likely because she doesn't know wtf is wrong with her body. And a potentially debilitating disease (MS) is something far more mentally traumatizing than knowing you'll eventually recover from a vaginoplasty.

Quote from: ZoeM on July 18, 2014, 08:02:29 AM
Seriously?
If you can't handle this, just wait till you're flat on your back on the second floor of the GRS recovery ward 'cause it took an hour to get the doctor while you were literally bleeding out through your brand new vagina, and then they asked you to stand and walk downstairs to go to the next door hospital, and you fainted five seconds after standing up.

Or till you discover that the pain of walking is just about an eight, and you have to do it (with stairs) three times a day every day for a week and a half just to eat.


Things happen. Keep positive and endure. Things will get better - believe me they will.

Try going up and down a steep flight of stairs while you literally CANNOT WALK from what doctors believe at this point to be Multiple Sclerosis. Yes, I straight up said "It sounds like y'all are looking for MS", and they said "You'd be wise to think that, it's what I would believe too". At least I'd get something from SRS. What do I get from MS? A permanent disease that costs 70 grand a year to treat, and a disability check that's about $1,000 a month for the rest of my life. BTW, the pain I get from whatever I have going on is INSANE. I will go from fine to screaming in a split second. Or the shocking jolting pain that I get that causes my entire body to twitch. Really safe while driving. Ever pee on yourself? Yeah, I've done that every day this week. Sexy huh? That should go well with my new vagina one day.

You seriously want to compare this to SRS? MS is permanent, the pain from SRS is not.

The good news is my incontinence is going down and my spasms are calming. Still can't walk though, and I still do get the occasional splitting pain that cannot be touched with any medication whatsoever. And no, I'm not exaggerating. No pain killer or CNS suppressant kills the pain. Nerve pain associated with CNS damage is terrible and very difficult to treat.

Quote from: nikkit72 on July 18, 2014, 08:20:27 AM
Stop being selfish.

Nope we will not kill you . We are not done with your life. Seriously 

You have too much to give and to gain. From the posts I have read from you with the advice contained goes to show that you are far more than the stuff posted within this thread. Use your strength and be patient.


I am talking as someone that has been clinically dead, has been paralysed from the neck down due to a spinal cord injury and spent 7 months in a MENS ward on a rehab unit learning how to do stuff again. The stuff you are experiencing now I deal with on a daily basis and have done for the last 7 years, yet after all the crap that surrounds it I still find soo much wonder in this world and I still continue with my journey.

Stay strong.

Nikki

I haven't done this yet (and I'm so sorry I haven't), but I really do appreciate everybody saying that I've inspired them and helped them at some point. That has been overwhelming and it means the world to me. I've gotten it here and in PMs, I may not respond to everything but it means the world to me from EVERY one of you. It gives me a new reason to feel like I'm living a worthwhile life

This is just a phase I'm sure, and when I'm over it I'll probably be the same old person as before. But this is literally the hardest part in my life and it's not even close. I've gone through a lot of stuff (my dad tried to kidnap me to gain custody so he wouldn't have to pay my mom child support when I was 7) but this beats it with a bat until it's unconscious. I'm very scared of the spinal tap. I'm just as scared of an MS diagnosis. How the hell do you start to tackle the reality of that?

Hang in there sweetie, you're tougher than you think! Meanwhile we'll all be praying for you, sending positive vibes and whatever else people do in hopes of a positively bright outcome through the diagnosis and treatment process. Auntie Shan thinks the world of you and I can plainly see many other of our girlfriends do too. 

For what it's worth, Alaina, I very much appreciate you for giving the doctors this opportunity to diagnose and treat what's really going on with your body.  From my end of the interwebs you being at the hospital yesterday and today feels good and right.  You're awesome.

Thank you.

I just wanted to reiterate what Shan and Miharu are saying. I'm glad you made it to the hospital (as unfun as that is) and are getting help. For what it's worth, I think you're awesome too.

I just want to say thank you, Alaina for going to the ER and getting checked out. As I said, I hate hospitals and got enough of them in 91/92 from my accident and then again in 2002/3 with more surgery to correct positioning of mesh they put in during my first surgeries in 91, lol! Believe me I wanted to end my suffering too as all these health problems kept further putting off my transition.

Anyway, I'm so glad your getting help. and as for the fat nurse, your skinny so you have the upper hand -remember that, lol! (it's a girl thing I'm sure your aware of).

Listen, take care girl and get better. I know spinal taps ain't no fun and they hurt like hell but they're necessary in finding a diagnosis. We're all here for you please know that. Also remember you can pm me anytime if you need to talk.

Allie

Thank you all, from the bottom of my heart (yes, that's perfectly healthy!)

I had an EEG done. Goopy hair day now. IDK what they found, but they had to have found something because I only saw the blinking lights on the left side and I was suppose to see them on both sides. The person doing the tests said it could be from blurry vision. I also twitched a lot when the lights went on. We'll see....

2 neurologists came to talk to me as the test was being done, but they left and will come back. I'll keep everybody posted...

Quote from: Alainaluvsu on July 18, 2014, 11:31:14 AM
Thank you all, from the bottom of my heart (yes, that's perfectly healthy!)

I had an EEG done. Goopy hair day now. IDK what they found, but they had to have found something because I only saw the blinking lights on the left side and I was suppose to see them on both sides. The person doing the tests said it could be from blurry vision. I also twitched a lot when the lights went on. We'll see....

2 neurologists came to talk to me as the test was being done, but they left and will come back. I'll keep everybody posted...

I've had an EEG done before. Those things are never fun. But I got lucky with the hair thing since they had some sinks around so you could get that goop washed out of your hair afterwards. I remember when the test was going on, I was feeling the usual weird stuff that was going on at that time. (Weird feelings with my heart, complete numbness in my arms and hands,etc) That whole time was so screwed up.

yes, I totally understand the beeping thing

I know its so easy for us to just say "buck up, put your big girl panties on and get over it" but we understand, really, we do.

You are in our prayers.

Quote from: Paula Christine on July 18, 2014, 12:33:58 PM
I know its so easy for us to just say "buck up, put your big girl panties on and get over it"

It annoys the hell out of me when people tell me that. (Especially if it's some serious health related issue.) I just want to punch them when they do that.

Dear Alaina, hang in there... you're strong; you're improving... 

Hell, you're a woman

Quote from: Julia-Madrid on July 18, 2014, 12:56:58 PM
Dear Alaina, hang in there... you're strong; you're improving... 

Hell, you're a woman

I am a woman hear me roar

Please keep us updated Alaina. We are all worried about you and why it was so important to go the the hospital. As for the embarrasing part though I fully understand To stay an active driver even though I don't drive anymore, others do it for me but if someone gets sick and so on I have to take thier place. I have to do physicals every 2years and they have do the old turn your head and caugh bit. I freaked out for a week 'cause I had bikini tan lines on the bottom. But the doctor didn't even act surprised.

I really hope you get well soon and wish luck for you. And yeah, you are more of an inspiration thatn you think.

BTW Hon, if you have to go on disability you should also be eligiable to get medicaid which should cover the mdeical bill if you have MS.

Medicaid in this state is a complete joke. Louisiana is set up to make people suffer. New Orleans is a bit different because they have their own version of Medicaid, but it still really sucks (a metro areas resources can only go so far).

You are getting updates as soon as I get them. I got a walker. That's about the only update I have at the moment. It's raining here in the Big Easy, I may post a beautiful picture of my view later when the Dome is all lit up