My Story Thus Far

If you don't know me personally then you probably are wondering why I want to get approved for a stem cell transplant. Here's a little bit more about me and what I've been through in the past 3 years.

I lived a pretty ordinary life... actually I take that back I had it all, well I sure thought I did at the time. Looking back I laugh at the fact that I could have been happy but honestly 3 years ago I was on top of the world. Never did I imagine that God would rock the very foundations I had placed everything on.
It was May of 2008 and I was 21. I had just gotten saved a year before. Life it seemed could only move forward at the time. I was living in Waxahachie with my boyfriend at the time and I was driving the car of my dreams a red Nissan 350z. I was working for Cohesive Automation in the accounting department and also training to be a technician under my Father at the same company. This was my dream job... I had the car, the job, and I was making more money than your average 21 year old. It would all change in just a matter of months.
All I wanted to do was sleep. What seemed like a perfect life and I was wondering if I could possibly have missed something. I had the checklist all checked off, so why was I so tired all the time and why did I not want to hang out with friends like before? Things would get better, they had to. Months passed I was still tired and now I couldn't eat. Everything made me nauseous, even the thought of food. Something was wrong that much I knew. I went to the doctor they tested me for mono and did some basic blood test. It all came back normal, so the doctor at a loss sent me for a sleep test. The results were that I was sleeping. It's all in my head then... great I'm sure things will get better eventually.
Things weren't getting better and my boyfriend and I were growing apart. I decided one day I needed a change and I packed my things and came home to my parents house. I had been moved back in with them a couple of weeks when life came to a screeching halt. I complained daily that my hands and arms hurt to touch and my parents thought I was crazy. My mom told me to go to the doctor and ask about Fibromyalgia, really she just wanted me to stop complaining. It was Wednesday, which meant that I was working for my Dad on job sites as a technician, he expected 110% effort when I worked for him. He wasn't getting it that day, all I knew was my neck was killing me and wearing a hard hat and running around a construction site was not on my list of "want to's" that day. I sat like a bump on a log just praying the day would end and I could go back to bed. When we finally got home I took a muscle relaxer because I thought I had pinched a nerve in my neck. Off to bed I went praying that I'd be fine come morning.
Morning came... May 1st, 2008. My whole body hurt to touch and although I had to go I couldn't void my bladder. My mother called a friend of the family who happens to be a nurse... her advice was to take me to the ER if I couldn't void my bladder because that sounded neurological. Off to the ER we went where they tested me for Syphilis and when that came back negative the on call ER doctor fought to get me an MRI. I will never be able to think that doctor enough! The MRI showed lesions up and down my spine and a Syrinx that was growing. For those that don't know a lesion is scar tissue meaning that something was attacking my spine and causing it to scar and a Syrinx is when the spinal cord swells and allows the spinal fluid to leak outside of the core. Needless to say I needed specialized care... so I was sent to Parkland.
Parkland didn't go so well I was in a ton of pain and they refused to give me any pain meds until a neurologist could see me. I guess it was busy cause it was about 6 hours before a team of neurologist could come and check me out. Another 6 hours later and they were shipping me out the door with a prescription for low dose pain meds and telling me to come back in three days for brain surgery. Between poking me and telling me that I needed brain surgery they also forgot to void my bladder.
My dad wanted a second opinion and some rest. So we went home to catch a few hours sleep and then it was off to Baylor for a second opinion. At this point I just wanted someone to stop the pain. I couldn't sit down, I couldn't have anyone touch me, I couldn't even touch myself anywhere. My whole body hurt! Never before had I been in so much pain and to top it all off I still couldn't pee! The ER nurses freaked out when they took my blood pressure and I was rushed to a room where finally I had pain meds and folly. I was admitted and the specialist came out of the wood works. I had neurologists, internal medicine, and infectious disease doctors. I gave out about 40 viles of  blood... I was being tested for anything even though I had never been out of the country. Finally a neurosurgeon was called in. He came to the conclusion that I needed brain surgery. Awesome looks like I'm going under. The day came and he decides he can't cut me open that he's not 100% sure that the Syrinx is the cause of all my problems. Now what? One of the doctors decides to give me three days of IV steroids and that I have Transverse Mylitis. The steroids work and I'm released from the hospital on May 8th, 2008. I leave with a diagnosis of TM and am told that more than likely it will never occur again. I only wish that had been the case.

I take some time off to recover and try to regain the strength in my hands, but then I'm back to work and life is going back to normal. Well normal but I start seeing a neurologist that specializes in Multiple Sclerosis. A couple of months down the road and I start having strange symptoms again... the MS doc thinks I have RRMS but she isn't sure and thinks that I should go to the Mayo Clinic or UTSW. The Mayo Clinic has the first opening so my parents and I fly out to Arizona. Tests are run and we meet with doctors who decide that I have RRMS and I should start the treatment for that. I choose to use Copaxone which means I have to give myself a shot everyday. It's a new normal... but tons of people do it and you never even know somethings wrong so I'll be alright. Copaxone doesn't seem to be working and I develop Optic Neuritis. Steroid treatment after treatment and I'm tired and still have strange symptoms occurring. My neurologist is at a loss she says I should try chemo to stabilize me. I start Cytoxan and I get infused once a month.
It just so happens that I never got around to canceling the appointment I made with UTSW MS Clinic. My mother decides that a second opinion cant hurt so I go to the appointment and tell my story. The doctor listens and then floors me by saying that she doesn't think I have MS that she thinks I have Devic's NMO. WHAT!?!?! I'm giving myself these shots everyday for nothing? A new plan is made... I get diagnosed with Devic's NMO and I stop giving myself the shots. I stay on chemo for 6 months at which point we decide I'm not stable enough.
Next step... Rituxan it's a different chemo and I start getting infused once every 3 months. After a year on Rituxan however we look back and see that I'm better for a month or so and then I start getting sick and run down and it's back and forth. Time for a new plan... CellCept is a pill form of chemo that I take everyday. Finally I'm stable for 6 months but I'm not able to work full time because I'm suffering from major fatigue and things just aren't like they used to be. The life of the average 23 year old is not what I'm living.

In August I fly to LA to attend the 2nd Devic's NMO patient day. I hear about different treatments most of which I've already tried to no avail. However one doctor talks about stem cell research and the few patients that have undergone the transplant. The results... nothing short of amazing, they're cured! No longer do they take any medications or do they even see neurologists. If they didn't walk before they're walking now and they don't suffer from the daily neuropathic pain. Fatigue that's not an issue for them either.
I leave LA knowing that something is on the horizon. I'm hopeful that a cure is around the corner but I can wait till later on down the road cause my case isn't that far advanced. I can still walk and I'm not blind, I might not be able to have the life I want but I'm stable. The earthquake isn't over there is always after shocks.
Its now December of 2010 and my eyes start to hurt constantly... I've been down this road before so it's off to the doctor where they tell me I have Optic Neuritis in both eyes. I do 5 days of IV steroids. Unfortunately that doesn't take care of the inflammation and the pain is still there. Since with Devic's NMO your vision can be there and gone in under 4 hours treatment is needed fast. I'm admitted to the hospital and it's decided that I'll under go plasmaphersis. Awesome they put a line in my jugular vein in order to pull the plasma out of my body and replace it with a substitute. I end up going through 5 treatments to make sure they get all the plasma out of my body and thus all the antibodies that are attacking my optic nerves. Too bad the surgeon nicked my lung while putting my line in and my lung collapses. Chest tube is inserted and when the lung doesn't heal on its own a blood patch is applied. Back home finally and I feel on top of the world.
I'm good for about three days and then I start to go down hill. One of the biggest issues with Devic's NMO is that a simple UTI can cause your body to go into a flare. This happens to me and all the steroids I was taking for the Optic Neuritis causes me to go down hill and I get dehydrated. I spend 4 more days in the hospital trying to get my system back to normal after the steroids.    

So after 3 years, 4 hospitalizations, 3 different types of chemo, 1 round of plasmaphersis, and countless daily meds I've decided that I'm going to try to get approved for the Stem Cell Transplant.
I'll be 24 in 9 days and I just want to be able to work a full time job and do the things in life that other 24 year olds are doing. I want to be able to go out with my friends and not get tired after the first hour. I want to meet people and go out on dates without having to explain my medical condition always fearing that it will scare them off. I just want to live this life to the fullest and take every opportunity I get. Guess that's my story up until now.