Being: 1995-1998

Well, yesterday I got onto a fairly good roll about my time as a teenager, so I'm going to try to continue where I left off now.

May 1995
My grandfather, via my step dad, past away. He had been very ill for many years. He was a two time POW in Vietnam (i.e. he'd been starved a few times), he smoked since he was nine, and was married to my grandmother: more then enough to make someone chronically ill. Pancreatic cancer was his final undoing. All of my aunts, uncles and cousins were here from across the country. The day prior to the first of his services, we had everyone over to the farm for a less somber get together. I was the oldest of the kids, I entertained them, we had pony rides, played waffle ball, what ever they wanted, we did.

To understand what follows, you need a little background. If you are put off by medical or "female" issues, its a good time to stop reading.

When your a teenage girl, they tell you your cycles will not likely be regular. Mine had never been. It might last 2 wk, or a month, and then i might go 3 months without it. By the week of this party, my time of the month had been more then a month continuously. The last week of which seemed to be getting worse and worse. I didn't like discussing anything like this with my mom, but I was getting concerned, so I spoke to her. She was not concerned and was sure i just needed to eat some red meat and put my feet up. The day before the party I bled through my clothes twice. And I don't mean a little, my clothes were soaked. She still wasn't concerned, I don't think she was really absorbing what i was telling her, with so much else going on. Some relatives were staying with us, so i was sleeping on a foam mattress in our spare room. The day of the party i woke up with bloody sheets. I was on auto pilot, talking about it didn't help anything, i just needed to keep moving, keep getting things done. I put the sheets in the wash and took a shower. I did my morning work, set up for the party, socialized. All while making trips to the shower to clean up, changing my clothes 7 times, and stuffing as much food as i could get down my throat. Never underestimate the power of baked zit, it was the only tangible thing that kept me standing that day. I honestly donut remember if i made it through the entire party or not. But, at some point I went to bed.

By only what could be described as a miracle, i woke up the next morning. I remember this part vividly. I was laying in a pool of blood. my hands, my clothes, my sheets, the mattress, all bright red. I felt like i couldn't move. I screamed for an undetermined amount of time, I gave out 4 big yells i know that for sure. My dog was there with me, I used him to pull myself onto my knees. He balanced me as i struggled with the doorknob (that doorknob still sticks). Its about 25 ft from the spare room to my parents bedroom door. I crawled on my hands and knees. It was the longest 25 feet I think I'll ever travel. I banged on the door as hard as i could, which was apparently not hard, because i had to do it a second time.
By the time my mom was opening her door, my other grandfather (he was staying with us because he had a broken leg) had been sufficiently disturbed and was out of bed complain about all of the yelling, and demanding to know what my problem was.
I remember telling my mom I thought I needed to go to the hospital. My grandfather and she were arguing about him needing a ride to the doctors in an hour, neither one really getting the magnitude of my problem yet. my mom decided to stop at our doctors office, that maybe they could see me and i wouldn't have to go to the hosp. My grandfather wearing his robe went with us. The bitching back and forth continued amongst them. Mom pulled up in front of the door and came around to help me out, but there was no more moving for me. I was conscience, but i couldn't move, she went in to get a nurse, two came out, one male, with a wheelchair. the picked me up and put me in it, wheeling me directly to a room. The male nurse lifted me onto a table. I think the doctor must have looked at me all of 30 seconds before he said i needed to get to the hospital. the hospital was less then five minutes away, and it was determined I'd get there faster if mom drove me. the put me back into the car and we went to the er.

We pulled up and someone was waiting for me at the curb with a wheel chair. Everything starts to get real fuzzy now, I think i must have passed out. I woke up on a gurney in what seemed like an operating room at the time. A women doctor was there, nurses were shouting at me, are you pregnant? could you be pregnant? I kept telling them I'd never had sex, but they kept asking me over and over. In the midst of this, I had my first "exam". I remember tears going down my face, and feeling very violated. The doctor was very apologetic, but it really didn't matter at this point.
They pumped me full of fluids and Premarin (hormones). the hormones seemed to stop the increase in rate i was bleeding, so they upped it, and upped it again, and it decreased quite a bit but was still out of control it would seem. I remember waking up in the ER to someone filling vials with my blood. It was a truly strange experience, they were trying to stop the bleeding, and were still taking my blood.

I was really scared, As the wheeled me up to the pediatrics ward, i really felt like i was dying.
shortly after i was in my room, 3 men came in. my mom, her good friend who happened to be a nurse, and myself were the only ones in my room at this time.
They wanted to discuss the lab results and options. My initial labs showed my hemoglobin to be
2. 9 was, as i recall, on the low side of normal. They estimated I had lost, over the last week, more then my total blood volume. They told us there were two options: a transfusion or to continue the hormone therapy and hope it worked. They had to inform us of the risks of the transfusion. In 1995, the blood supply, was still very tainted. This is what they told me. 40% chance of contracting HIV, 50% chance of Hepatitis A, B, or C, and 60% chance of contracting various other diseases transmitted via blood. Keeping in mind, how many units i would require initially, and a high potential of me needing repeat transfusions (since no one had a clue why this was happening), There was very little chance of me not getting sicker from the transfusion.
My mom was sobbing. I remember squeezing her hand. I looked up at these doctors who were sure that transfusing me was the best solution and this is what I said. "I'm not afraid to die mom. But I don't want to live the rest of my life with aids, or anything else. It's not worth it to me." And my mom did something I would have never expected, she did what I wanted. The endocrinologist kept filling me with Premarin. By that night my hemoglobin was 4, the next day it was six, the next seven. Every hour someone took my blood pressure, and my vitals, every 4 hours someone came and drew my blood. I also got to experience several bleeding time tests. (they cut your arm with a razor blade and blot it with a sheet of paper, seeing how long it takes you to stop bleeding. )

After 2 weeks in the hospital, The bleeding had stopped. I went home, with my Premarin pills (3X's a day) and 10 standard Birth control pills twice a day. I was in the hospital again in July, but i was there in much better shape then i was in may. The had no idea what had happened. They gave me more Birth control pills. 12 or14 twice a day. Until my legs started to show signs of clots. Then I got to start on the Depo-Provera shot. When September came around, I still felt like the person laying in the hospital bed believing i was going to die. There was nothing to show why this happened, and having had another episode, nothing to suggest it wouldn't continue to happen. I signed myself out of school. I didn't want to spend the little energy i had left, sitting with tutors (i was sure not going back to school now to have this happen there).
9 months later i got a call from the hematologist that saw in me in the hospital. There was a new method of testing for a certain bleeding disorder, they were doing it at Univ. of Penn. He said the test had been run twice at the local hospital, but there was a good deal of evidence that suggested the university new method of testing was far more accurate. So I went and participated in the six our long testing, gladly. A month later, I knew what was wrong with me. It sounds silly, but it was one of the best moments of my life thus far. Von Willebrands Disease: a lack of or dysfunction of factor 8 in the blood, preventing proper clotting function in areas of the body with mucous membranes. There are 3 types, mine type 1, was the least severe. It was genetic.
So i knew what was wrong, and it wasn't my fault!!!! There were even some therapies in practice for my new disorder. In the end, I've had to stay on the Depo shot for the past, nearly, 13 years. But the medications they have can help me with surgeries or dental work, nose bleeds (something I'd had bad my whole life). This doctor gave me back my life, or at least the feeling that a life was possible. Not something most 17 year old think about, but it was my salvation.

I turned 18 in august of 1997, the year i would have graduated HS. In February of 1998, I took my GED and passed. I'm told its easier now, but it was really hard for me then.
March 22ND, 1998, I moved to OK with my Aunt, Uncle and cousins. That's where I got to actually BE a regular teenager for a bit. But Oklahoma is book in and of itself. That will have to wait for another post. Thanks to all who took the time to read about this. It was an experience that has had an enormous impact on who I am today.