I became ill with Guillain-Barre syndrome in December of 1997. I am still recovering, and still not able to walk unassisted. I have come a long way, and continue to work hard at that ultimate goal of being able to walk, and run, and dance. I think my biggest reason for this blog is just to have a place to vent. A place to say things and get them off my chest. A place to share things and maybe help someone else. Just a place for me to come and be me.
I love doing so many things, and most of all I love to create. Whether it's cooking, gardening, painting, crocheting, or baking -- I am addicted to creating. So, I suppose this a great outlet for me to share those things as well.
I don't make any money. I have just recently been forced to re-apply for disability due to a massive tumor that was discovered in my pelvic region that needs to be removed. If it wasn't for that, I would stay off of disability and any kind of assistance. I like to try to make it on my own. For now, however, I will use the resources that are there for me, and still try to contribute to my blog as well. I have a donate button for those of you who may want to contribute. The only reason I have added that is because I've had people ask me if there was a way they could help after I provided them with some kind of help. Something in my blog made their life better, and they wanted to show their appreciation. If the same happens for you, then by all means, contribute away! However, I am not here begging for donations. I also have ads on my blog that bring in a very, very, very minute amount of revenue. ;)
I hope you enjoy your stay and if you wanna email and say hi, or share your own story, feel free to do that too.
Here is the story of when I got sick:
I can still remember when I got sick like it was yesterday. The almost 12 years since are kind of a blur, but those few days leading up to my illness, and the months spent in the hospital after, are as crisp and clear as if it were happening again right now. You never forget something like that, no matter how hard you try to block it out.
I had decided to clean up my act. I had been working as an exotic dancer, but I had a child and a boyfriend and I wanted to be more "normal" and focus on my family. I still had to work, and there remained the fact that I had dropped out of high school, and although I had gotten my G.E.D., I still had no formal education to speak of, so I decided to become a cocktail waitress in the bar I where I was working. The transition was easy, I had waitressed and bartended before, and I was certainly strong enough to do the work. In fact, I was in the best shape of my life. Years of dancing in 6" heels and swinging around poles had sculpted me into exactly what I wanted to be, and then one day it all came to a halt... literally.
I was working one night and suddenly realized I was very weak. This was unlike me. I had been drinking water by the bottle-full and working out and eating right, so there really was no reason for me to feel so tired and weak. There had to be something wrong, but I kept telling myself it was the flu or a fluke and I would be better soon. More and more symptoms kept occurring until finally I had to sit down to rest and when I tried to get back up it was very hard to do. For someone as in shape as I was, this was extremely odd. I went home that night very worried that something was seriously wrong, but since I didn't get home until around 3am, I didn't bother waking anyone to voice my concerns. A few hours later after attempting to sleep with a full bladder, I got up to use the bathroom and could not go. My bladder was full, there was no doubt about that, but nothing was happening and no matter what I did, I couldn't go. Finally, that morning very early, I went to the ER. By the time I got to the ER I was in so much pain I was buckled over and I could hardly walk. This was a busy day for the ER, and I was forced to sit in the waiting room in a plastic chair, which felt to me like it was covered in nails, for hours. Finally there was an open room, but with no bed, so I had to sit in the chair even longer until a bed was brought in and they were finally able to lay me down and empty my bladder for me. The doctor who examined me was very impatient, didn't listen to anything I was saying, and rushed me in and out as quickly as he could. He told me I had Herpes and sent me home with pain meds and meds for the Herpes that I found out the hard way I didn't have.
By the time I got home I was so sick I was vomiting and passing out at regular intervals. This was Christmas Eve. I was supposed to go shopping with my boyfriend, but was too weak and sick so I begged him to let me rest. He dropped me off at our condo and I slept the entire time he was gone. When he came back to pick me up I tried to stand up and collapsed to the floor. My legs had simply given out. I was able to get back up and very painfully walk to the car, stopping along the way to vomit some more. By the time we got to his parents' house I headed straight for bed and didn't come back out until the ambulance came to get me on the morning of the 26th of December. I had refused to let anyone call an ambulance prior to that as I didn't want to ruin anyone's Christmas.
My memories of the first couple of weeks are very sporatic and limited. I remember there was a lot of pain. A lot. The kind of pain not a whole lot of people will feel in their lifetime, and thank God for that. I've never felt so much pain, not before (and I've given birth - naturally and without drugs), or since. I wouldn't wish this kind of pain on my worst enemy, and there are some people in this world I would like to see suffer, but not even like this.
At the time I was completely unaware of what was happening to me, but now I understand that my body was attacking itself. My own immune system was destroying the cells that make up the tissues that protect the peripheral nerves along my spinal chord... and nobody knew, or knows, why. This alien disease was killing me. Destroying my abilities inch by inch, starting from my feet. By the time I had gotten to the hospital I was unable to move my legs, and within a day it had moved to my diaphram and made me unable to breathe on my own. After that it reached my brain and put me in a comatose state. I was in this state for what I've been told was about 3 days until they finally gave me the treatments I needed to bring me back.
Little by little my feeling and movement returned, and as it did I had to learn things all over again. I was doing child puzzle games to try to regain my dexterity, and at one point I tried to open a soda can and was unable. I couldn't lift my thumb. I couldn't brush my own hair or teeth. It was hell.
I was in the hospital for a total of five months. During that time things slowly returned to normal. I was able to use my arms much more normally, although they were still very weak. But, for four months, my legs remained paralyzed. I could not feel them or move them. I was stuck in a nursing home because I still needed 24/7 care. When my legs finally started to move again, it was the happiest day of my life. I literally screamed when I saw my right leg twitch one morning when I tried to move it. The nurses thought something bad had happened and came running, only to find me in my bed crying with a huge smile on my face and yelling "they work, they finally work!" After months of pain and suffering, it all washed away the day my leg simply twitched when I tried to move it.
When I was released from the hospital May 28, 1998, I was determined I was going to get better. Guillain-Barre Syndrome was not going to win. I fought and fought and fought what seemed like a losing battle and over the course of time I slowly started to give up. I stopped trying and started giving in to the fact that this might be my fate. I might spend the rest of my life in a wheelchair. I turned to heavy drinking, and then turned to abusing drugs. I didn't eat right, stopped exercising, and sunk into a pit of hell so deep it was hard to see the light.
Until finally one day that all changed. I woke up and told myself I wasn't going to pity myself any longer. I wasn't going to sit still and take it, I was going to fight. And this is the story of my fight!