četrtek, 23. november 2017

IF BREATHING WAS EASY

Why I didn't post anything for two weeks?

I am sick. 

The first thing you need to know about me is that I am a fighter. Literally I would have to miss a leg to go to the hospital, the world would have to come crushing down on me for me to break. I depend on a few people.






I spent last weekend with the people who have the same or really similar diagnosis as I do. I learned so much about how to make it bearable. We had a seminar about how to deal with it and there was a lot of talking about how other found out they were sick and how they felt and reacted and told the people about it. And they all had it similar - they were scared, angry and then they learned to live with it. But I couldn't relate. But let's talk about this after I tell you my story.


Ever since I was a little kid, I had problems with pain in my legs. My knees and ankles were really hurting me and they would get a little swollen, so my parents took me to the doctor. My doctor briefly looked at me and said that it is because I am growing too fast my bones are slightly in pain, but that I should be fine. He called it 'a growing up disease'. As I was growing up I learned that if I walk too much that my legs will hurt me in the evening and the next day. I remember how me and my grandma used to sit in a sofa, watching telenovelas and she would massage my ankles with 1001 different creams. It would never make me feel better, but it was a thing we did every night, just to let me forget about my pain a little.

Until I was a little lady, I was already used to that kind of lifestyle. The pain never went away even when I stopped growing up. But let me tell you, if you live with pain your whole life, you get so used to it that you can push yourself to do everything normally and you sometimes don't even notice it anymore. You get really immune to other pain. If I got hurt somehow, I would sometimes not even notice it. It is actually like a superpower. If I got really sick with high fever, I would look really okay, because pain can't get to me like it can get to other people.

Then when I was in high school I started getting my ring finger really swollen. It was red and I couldn't even move it anymore. I thought I had some sort of accident that I didn't notice. And I let it go for a few weeks, I didn't think much of it. Then in one year it was really painful, I couldn't even open a jar anymore. My ring finger was the size of two normal fingers, so I went to my doctor again and tell him about what my problem is. I did ultrasound (that didn't show anything, like it was fine) I did bone scans (which also showed nothing bad), so my doctor told me I had tumour. I was freaking out. They obviously tested my blood and everything they could to support that statement. I went to see a plastic surgeon and he told me that he can't do anything for me, that he can't take anything out, because there was nothing there to take out.

You can imagine how confused I was. Then he said that maybe I should go check myself out in this hospital that is in Ljubljana, just to make sure I don't have any autoimmune disease. He wanted me to cross the worst options out, just to be sure. Just to be sure. A single sentence that is, until this day still stuck in my head. So I went. I waited 2 months. People wait 2 years for their turn to be treated there and I waited 2 months. It kinda freaked me out. Why did I only have to wait 2 months?! The first day I was treated there I got two injections of depo medrol in two of my fingers. I am not gonna lie, it hurt like hell. I got them in the exact spot when I hurt the most. The next two days I couldn't even move my hand, and I had a job where I had to move boxes and check a bunch of plastic. I still did it, because as I said, I never admit I am not okay.

Then I had the appointment to come in a month and give blood. I gave so much blood I lost all my energy for that day. I was just done. And then they called me back in a few weeks. The doctor checked me if I had any skin problems, like psoriasis and then she told me that I should take Medrol and Sulfasalazine and a bunch of other stuff. I also got a depo medrol injection and it hurt like hell. I had my whole leg paralysed for 3 days. I got a paper that I didn't even read and I went home. I took my pills and then I got a back pain. A weird back pain, where I couldn't turn my head to the left and honestly if just felt like I slept in a weird position and that was the consequence.

But the pain never stopped. being used to it, I just let it slide, but then I had to take even more pills and I got the worst side effects ever. I stopped eating, which made me super weak. But not that I didn't want to eat, but my body just wasn't hungry. I was never even hungry when I saw like my favourite food and I could not eat a single thing for two days. Then I realised that is not good, so I made myself eat lunch everyday. Then I got sick. I had really bad headaches, because I started having vision problems. I couldn't focus things and I couldn't even read a single sign on the street. I always had that weird feeling like I am lost. Like one moment I would know exactly where I am going and then in the next I forgot where I am or what am I doing there. The fact that I got a rash didn't even bother me, because I was too focused on other things that freaked me out. So, I researched a lot. I joined a support group with people who have the same illness, and now I am officially a disabled person (yeey! haha) and I stopped eating my pills. In like 5 days I lost most of my symptoms, but I will have to go to the hospital in a few days to get new medication. Also I gave a lot of blood to run tests on.

Also, I went to this amazing weekend seminar and I learned so much about it. How to deal with loss, which I have been dealing with for the past half of a year and how to teach my family and friends to deal with it. Also, the medication and therapy and blah blah blah, stuff that you would have no clue but being a pills expert myself, it was the best seminar in my life.

Look, I am not a superwoman, but I fight Spondylitis so close enough. 

I know that reading this doesn't really give you a full picture of what is Spondylitis. But if I had to put it in a short conclusion. It is autoimmune, chronic, non-curable disease that causes your joints to separate from eachother in a way (I heard a good joke about this - ''My joints go out more than I do.''). It causes spine deformation, other joints deformations (for me it is my fingers and ankles and knees and neck) and the really bad one - it attacks your organs, among other totally decent symptoms. It also shortens your life span and it is really hard to have babies. Also, if I have a baby with a totally healthy partner, there is still 50% possibility that our kids will also get the same disease. If I can get kids. It is hard to live in a body that rejects your existence, no doubt. But also know that not everyone have these symptoms, that is just how I have been dealing with it so far. I heard a lot of different stories. Some have it better, some have it worse than me.


Lately there has been a lot of discussion about Selena Gomez and her battle with Lupus. Lupus is basically a disease that goes in the same category of autoimmune diseases, but it is a little bit different, it affects mostly your organs. Just wanted to tell you that as a fun fact.

Categories that go to our group are: Rheumatoid Arthritis, Lupus(es) and Spondylitis(es)










If you can, please spread awareness. Our thing is blue ribbon. But only if you want to, don't say I made you haha.

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