(WARNING - This story is rated R due to graphical descriptions. Most people with ITP do not experience symptoms this severe. ed.)
Well my name is Bill and I had a little headache so I decided to go get a few aspirins at clinic. At a military clinic, they look ya over and take a little blood first. I was late for my class and it was taking them a long time to get my pills. Then I heard all these ambulances coming in and people rushing all over the place.
And so my life began knowing that I had ITP and a blood count that was not measurable by machine or hand count. It read flat out zero. I just had a headache and it was getting worse every second. By the end of the week, I was big time Army news and doctors all over the world came to watch me die.
Now I didn't feel a thing, but things started getting messy. They put me on the expectant ward, the place where people are expected to die within a week. Oh man, the horror movies got nothing on the military expectant ward. People are croaking around you every minute. You got to make friends and carry on a quick conversation. Friendships last only an evening or a few hours there. All night and day, they were closing curtains around my buddies, zipping bags, and then the dreaded cleaning crew comes in an sterilizes and wipes down the bay.
I had on the average twenty to thirty doctors, nurses, and so called visitors come in with clipboards. They had a clown that acted like a tour guide. Now over here ladies and gentlemen we have a most unusual case...how do you feel today Bill? They were taking so much blood out of me I felt like the American Red Cross. If I'm bleeding to death, why did they kept taking my blood? The guy came around every hour with a basket full of vials and telling me his brother was from Transylvania.
Things got worse when my count was discovered and found to be below 100. I got an out of body experience and felt my whole body was a slab of wet meat. It was very heavy, cold, and clammy. I could feel blood oozing through my veins. I called it the "melt down". It was pretty cool because that is what my body did. Blood oozed out of me everywhere. Urine was red, eyes, saliva, bowel tarry black and bloody. The coolest thing is when I was brushing my teeth and they came out of my gums. I took out all my top
teeth and placed them on the sink. Somebody came into the restroom and saw this and I nearly scared him to death. He was already on the death ward and I was not helping. I put the teeth back in my mouth. I had long blood purpura sacks hanging out my mouth. The students in my class would come to see me and I would show them the big sacks of blood
hanging out my mouth. They would write their names on my skin and we would play tic tac toe on my stomach. I would show them how I would bleed by just rubbing my skin.
All this time I didn't feel any thing but just a kind of a warm rash feeling when you get the chicken pox. The doctors wanted to take out my spleen but I refused knowing doggone well I would bleed to death on the board and I know all those doctors were ready to slice and dice me since I was in a military hospital.
By accident, I found the ITP web site, and I have gone through most of all the ITP experiences. I kind of like my ITP, It makes me kind of special since it is of unknown origin. We all got to die from something but I am living with my ITP. It is like an internal meter. It tells me when I am boozing to much or not eating properly. If I do not exercise out comes the purpura. It is like, hey buddy, ya better take care of yourself or ITP is waiting to send your butt away. While I am typing this a little purpura bump just jumped into my mouth. The funny thing about this is that I can see it come and go. Now I just had a beer and of course one popped out. Shame on me...I am skirting death!
ITP has really changed my life, but I kind of knew I had something since my parents made a big deal of me bleeding for two weeks in the hospital when I was five from a nose bleed. I always got nose bleeds.
If you think I am crazy, you should have seen me on prednisone. Man that stuff had me leaping out windows. I gained 50 pounds and ripping muscles...I was a bad SOB.
Wow, what passion here!!! I’m still a bad SOB. It has been over a decade or so since I wrote this past story of my ITP episode in the military. I finally retired and got out into the civilian world helped by a lot of support from my family. Unfortunately, during the time I wrote this last story, my mom passed away from ovarian cancer. She died in my arms at our family home which put a lot of stress on me, and the ITP. came back. It seems as though stress causes my symptoms. I also found that bad diet, alcohol, and any contact with poison causes the symptoms to come out too.
From time to time, the purpura would come out in my mouth. Eventually I became a school teacher and found out the water in the drinking fountains had high levels of lead. Man oh man, I started to freak out. For some reason, I started to eat black licorice. Blam, more ITP! I found out, I can't eat licorice. So I got on the internet and found all the things I could not eat or drink or do. This really made my life kind of depressing. So I decided to get healthy and get into a sport that I enjoyed. That was bicycling. Well, it’s a little more than that! I got into speed bicycling and setting world records.
Since the last time I have written my story, I broke both arms and injured my head and posterior region. I have metal pins in both arms, wires, and all that. I also found out that my symptoms will react to any metal in my body. Now I have metal embedded in my forearms and can identify with our Governor, Arnold Schwarzenegger. I feel as though I am the Predator with all this metal in me.
Would I do it again? Heck yes! Over the past decade or so, my ITP comes and goes. It is not as bad as it was when I was laying in the death ward at BAMC, or as they call it, the Expectant Ward. I miss all my buddies that died on that ward while I was melting down each day. I miss the Vampire pulling pints of blood out of me every hour or so.
I have received hundreds of emails from all kinds of ITP members. I have spent many hours typing replies back to some very special people. I did ask for the good stuff, and the almost croak stories. Lord, I sure did get a lot, and they were very touching. I cried a lot too because some of the stories out there are so moving. I have made a few long distant email friends who still keep in contact with me. Everybody knows me as Tic Tac Toe. Every time I get an attack, I play a little Tic Tac Toe game on my belly.
I am the only person in my family that has ITP. It is manageable, and you just have to have a good attitude about yourself and life and just keep on keeping on. With good friends like Joan and all the wonderful things that the PDSA organization does for so many people, I think one day this ITP. thing will get licked. We will win! I am so sure of that. I hope to hear success stories from other ITP people and I wish you all the best of health!
Well if anybody wants to wrap about ITP and I only want the good stuff, like how you almost croaked and bleed to death kind of stuff. Please e-mail me: firstname.lastname@example.org