I know from the tittle you would think that this is about my body image and how I don't like the way I look. Well you would be wrong. I love my body image and think I am great they way I am. This is about my inside body and how it sucks having an illness that is only on the inside.
Some people know that I have an illness but most don't. I like people not knowing because then I don't have to see the pity in their eyes or the look people make when they think you are lying. But Lately I have decided that I should just vent about it and let people in a lil of my day to day world. So here I go being open and letting you all know what it is like.
OK, so we will start with the simple stuff like the name of the disease and what it means. It is called Congenital Hepatic Fibrosis. It is a liver disease that makes it turn into scar tissue. This is a rare disease and is mostly found in European countries. How the disease works all depends on the person which makes it hard to predict what will actually happen to a person that has this disease. It is usually found in childhood but in rare cases it can show up in your later teens. Mine was found when I was 19.
As i stated earlier it has no set course so here is how mine showed up. I got a blood clot in the main hepatic vain going to my liver. I had just been put on birth control so they thought that it was what had caused it put me on blood thinners and left it at that. I started to get horrible pain in my stomach and was going to the E.R. once a week or so for it and my doctor did a bunch of tests that showed my liver and spleen were larger then they should be. My doctor sent me to the Mayo clinic in MN to a liver doctor to see if they could figure out what was wrong. My younger brother had the same liver disease so they did a biopsy to check for it . It came back that I was stage 4 of 4 of the disease. For those of you who don't know what that means it meant that my liver was very scared and it wasn't healing it self like livers do.
Even though I was stage 4 the doctors said that my liver was working well enough that they thought that I would never have to have a liver transplant. I was put on meds to help with some of the symptoms and I go for check ups every 6 months because even though they don't think I will ever have to have a transplant my liver could just decide to give out on day and I would . There are no meds to treat the disease only the symptoms that come along with it.
So how has my disease progressed you may wonder. My spleen which helps the liver out and controls your blood counts is now enlarged along with my liver because of the blood clot I had made the flow to my liver harder to go through then the one to my spleen. This makes my my spleen think that there is too much red blood cells and platelets in my blood so it eats them and makes my counts drop low. Which causes me to become anemic and bruise really easily. I have pain because of them being enlarged.( Imagine that you are trying to stick two basketballs where there is supposed to be two softballs ). Another bad thing about my spleen being involved with it is my immune system is crappy and I get sick very fast and it takes a while to get over it.
The thing that I hate the most is that it makes my kink life get very compromised. I know that it is dumb but there are a ton of times that I would love to play but my body says no way. Right now I am I can't even have sex most of the time because of my immune system being crappy my felopin tube is enlarged and filled with fluid which converts to pain with sex.
I kind of wish my liver would get worse so that I could get a liver transplant which in turn would make my spleen not having to work as hard and I would feel better. But that doesn't look like it will be happening any time soon. My doctors say I am kinda in a catch 22. My spleen is worse then my liver and they could take it out but then if I ever needed a liver transplant I couldn't have one without having my spleen. So this is why I hat my body and why some days I can't get out of bed or come to a party or have a scene.
