When I was 3 I got sick. Now, when it comes to the vast majority of this I don't really remember much. Being really young and all, so I'll just tell what I remember.
I remember needles, uncomfortable clothes, asking the nurses when they slept and them telling me it was during my "coloring time", mostly just little things like that. I really don't know to much about most of that time. I remember hearing alot about how my spleen was enlarged, and stuff about that, but you know, I was young so I didn't really listen.
When I was in high school everything took an extreme fast route to bad. So we started going to a doctor and finally after 15 years of not knowing, they told me I have blood disorders. Good news though, take out the spleen, and its fixed! So that's what we did.
Now, I can tell you that for 7 years I have been healthy. Well, not perfectly, but alot healthier than I've ever been. But all that has recently changed.
About 2 weeks ago I started turning yellow. Just assuming (well maybe hoping) that it was stress related (I had just started a new job, me and Mikey had just moved into a new place in Ogden...) I... Well I basically ignored it until I was neon yellow almost.
That's when I went over to my mom's. Wednesday I got up and felt terrible. I went to my mom's to make dinner for work that day since our stove wasn't working. (By the way, this whole experience really makes me believe that everything happens for a reason) I got thirsty while making my ham fried rice (yum) and got a glass of lemonade. Since my mommy works nights she was pretty much asleep while I was making food.
I had brought my laptop so I could talk with a girl I bought a new doll from, and track her progress in shipping. I picked up my lemonade, went to take a drink and suddenly it was all over my computer. I don't even know how it happened. It was just everywhere. In my head I thought "I have to get this dry, Mikey will be so mad if I ruin this laptop."
Well my brain wasn't processing to fast, so my only idea was to take my laptop, turn it sideways and shake it out. Well that woke up my mom, as I just dumped lemonade all over the two of us. While she was still waking up and trying to figure out what had happened I thought get something to dry it! So I went into the kitchen and stood there for I have no idea, trying to remember what I could use to dry my computer. Eventually, I thought to myself "Napkins. Napkins can dry stuff."
So I grabbed a fist full of napkins and proceeded to "pat" dry my keyboard. That's when my mom says, "Get a wet towel." I stood up not sure what she said. "A wet towel. In the cupboard by the sink." So I guess I got a wet towel, cause the next thing I remember I had a wet towel and was once again "pat" drying my keyboard.
I was finally satisfied, and sat down, my heart was pounding, and my head ached really really bad, so I just sat back trying to breath and not pass out. I remember my mom asking me lots of questions. I really don't remember much. I know I gave her my insurance and she made phone calls. I remember she called my work, and we got in the car and drove to the emergency room.
I remember the strange looks I got, and answering the ladies questions. I remember getting the things on my wrists to identify me, having to put those stupid stupid gowns on, getting a blanket because it was FREEZING in there, and them coming in with needles and and IV. That's when we knew I wasn't going home that night.
They drew blood, and put in my iv. Then my mom went out to call my husband Mikey, and my sister to tell them to come up. In those 2 seconds she was gone the doctor came back in. He told me that my blood count was so low that my heart could've stopped at any second. He said that I was going to have to have a transfusion and that I wasn't going to be going home (which I'd already kinda figured but it still wasn't pleasant to hear)
Now one thing to note is that I am TERRIFIED of needles, and I had already been really upset by the whole getting the iv in in the first place. Now from what I'd understood a transfusion was them putting in new blood while taking out old blood. So I would have to get another iv in. Well if you were ever wondering, it is not like that. They just hook the blood up to the iv and let it drip in just like anything else. Not quite as painful and terrifying as I thought.
So my poor mom comes back in after I had received this news and I am just in tears (at this point still thinking that transfusions where alot scarier than they are) and I could barely get out what was going on. So she went and found a nurse, found out what was going on, and also found out that transfusions aren't that scary.
Well I still don't remember much. I know that Mikey got there at the same time as Karissa and Amanda (adopted sister) and that I had to ride in a wheel chair eventually to get to my room. They hooked me up to stuff. Sherri (aunt) and Neisha (cousin) were there at one point. Shandra (another cousin) and Liz (adopted cousin) where there at one point. I think other people might have come.... But really I don't remember much of that day.
After that I ended up having to get another transfusion and stayed more and more nights while they had to check if my blood count was stabilizing and all that fun stuff.
So you are probably wondering what is wrong with me. Medically speaking. Well the big one is Hereditary Spherocytosis. Now what that means is that I make balloon shaped blood cells. This makes the membrane around them weak and able to break easily. That's not the whole nub and just though.
I also have Cold Anglutinin Auto Immune Hemolytic Anemia. I know what you are thinking. Same thing I was. Huh?
Ok. This is actually easy to explain going backwards. Hemolytic Anemia, lack of blood cells. Auto Immune, my immune system is attacking my blood cells and offing them. Cold Aglutinin, when my body temperature is gets low, it activates.
So the nub and just. When my body temp drops my immune system sees my blood cells as a threat and they attach antibodies to them that make them burst. Add this to the Hereditary Spherocytosis and we have the big problem with the hospital stays.
Well to get rid of this you remove the spleen... which I did 7 years ago.... So now what? Prednisone. That is a steroid that suppresses the immune system. This means that on top of having a weak immune system from a lack of spleen I have to suppress my immune system in order to live. Which means I have to sanitize everything and keep hand sanitizer on me.
So that's the whole thing. So far. I have to get blood drawn pretty much every week until they can tell for sure I'm stable. Also to make sure I stay stable while getting me onto a lower dose of prednisone. I have to get on a lower dose because not only does it suppress your immune system, it takes away from your calcium and does other not nice things to your body.
Yep. So that's the nub and just so far. So toodles.
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