petek, 06. april 2018

Dying to live, living to die

Stay alive. 
The autoimmune diseases are a varied group of more than 80 chronic disorders. They affect virtually every organ system in the body, but in all of the diseases, the underlying cause is the same: For reasons not yet understood, the body's immune system goes haywire and attacks the body's own tissues. That makes it hard to treat and harder to understand. But we know that something sets off this  reaction to make the system attack itself, but we don't know why or what. About 75 % of these illnesses occur in women. Many of autoimmune diseases are rare, while others, such as Lupus or Rheumatoid Arthritis, are much more common. But combined, these diseases represent the fourth largest cause of disability in women and men.

The total number of deaths from autoimmune diseases placed them within the top 10 leading causes of death for all women under 65. For women ages 15 to 64, they were at least the eight leading cause of death.

I am the ''lucky'' girl with the rare autoimmune disease that nobody understands. My diagnosis is still until this very day not 100 % sure. Doctors can't decide of the certain type, because I show signs of three different types of spondylitis. But if I would describe it to you, it would make you sick; sometimes when I show other people my knuckles they are scared to look at them. Well, it is not good. But the worst part is that it affects my organs.

This second I can be totally okay, the next second I am on my way to hospital and kidneys checks and everything else. My medications are really badass, I can get any pain medication I want and because if I want to stay alive I have to do a lot of different pills. This month I'm starting different type of medication, because nothing worked for me so far and I am getting a little bit desperate. Practically I will do really similar therapies as chemo. It is actually the best news in my opinion.

There is no cure. I will eventually die from this disease if I don't die for being too clumsy. Which wouldn't be a surprising thing, trust me.

The one good thing came out of it - when you get sick you truly get the clear picture of who your real friends are and who are just there to use you and leave you. I am currently probably the happiest I've ever been and all my friends are honest and real and I am 100 % sure that not a single one of them would stab me in the back. My inner friendship circle got smaller for sure, but I love it. At first it was hard and it made me really question everything in my life, but I truly believe that if people can't handle me at my worst, they don't deserve me at my best. And a lot of people from my past came back to like talk it out and it is great. It's not so bad after all.

But don't get me wrong. I am scared, scared as hell. I will have to do IV's all the freaking time, I will probably have the worst side effects and there is only like 66 % chance that it will help me have a better life. But it is worth a try, everything new is worth a try. One day I am sure there will be a cure and no one will die and everyone will lead a long happy life, but until then I guess I have to be one of those people who will be experimented on for the future good. I can't be mad at that.

The one and only human I appreciate the most - my room mate - partner in crimes - is being just the most supportive human ever, like I am not kidding you, we do physiotherapy everyday together, he cuddles me when I am in pain and he always asks how I'm feeling, he makes me laugh about it, picks me up when I'm showering and can't get up, opens jars for me, holds heavy objects for me and still thinks I am the best human on the planet. I don't know how he does it, but I am so glad that he does. Because trust me when I got sick I was legit the worst human to handle, I'd be annoying, depressed, mean and I would need 24/7 attention and after all this I would feel physically and mentally exhausted. I was not able to give him what he gave me and that is why he is the best human I have ever met. I love him a lot. I'd live for him and that's hard to do.


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