Rare Disease Day 2015


It’s rare disease day. It’s a weird day – it’s not really one I celebrate, but one that needs mention, I think.

I suffer from many rare diseases. Too many to mention. I’m in the process of getting more diagnosed. My body is fighting a war against itself. If you looked at me, if you just glanced at me, you’d have no idea. You’d have no idea that my body is not capable of keeping itself healthy. It’s not capable of protecting itself.

That I suffer from heart problems, lung problems, neurological problems, vision problems… it adds up. It takes a toll. I’ve had doctors literally throw their arms in the air and say they can’t help me. That they don’t know what’s wrong with me, just that I’m sick. Just that I’m broken. Just that all we can do is try and treat the symptoms, and pray that it works.

It becomes medication roulette. Add in that on top of all this, I have mental health issues. It feels like everything is collapsing. That I’m nothing more than a pile of disorders, a pile of symptoms.

I don’t feel it helpful to list out all my disorders. I don’t want to look like someone who is just another disorder. But I do want to bring awareness to the feelings. To the pain. To the emotions.

It’s so hard when I watch people in my life get quick diagnosis. When I watch people find out what all is wrong with them. While I am trapped in limbo. I’d rather know I had a disease with no cure than to be told “we don’t know what’s wrong with you, sorry.” I have many diseases with no cure, but that’s not all. They know there’s more wrong. They just don’t know what.

Being sent from doctor to doctor sucks. I’m on medical leave from college. I am drowning in debt for a degree I’ll never get. I get told I’m lucky to be able to spend my days sleeping, on the internet, playing video games, and watching TV. But I would trade nearly anything not to have this life. There are days when I’m too sick to sleep, too sick to play games, too sick to watch TV. And no one knows why.

I don’t want a cure, per se. I just want to be able to have a fulfilling life. to be able to live my life to the fullest extent possible. But right now, it’s not possible. Right now, my life is a mess of appointments, of tests, of procedures. And it doesn’t show any sign of getting better. It doesn’t show any sign of not being improved.

It’s fucking HARD. And on top of it all, I get well meaning people who tell me that I’m an inspiration. Who tell me they could never do what I do. You know what? I can’t do what I do. But I have to. There is literally no other choice but to carry on in the best way possible.

I get well meaning people who tell me that I’m SUCH an inspiration for doing every day tasks like getting a frock-fracking Dr. Pepper (yes, it actually happened). You wouldn’t say that to someone who is able bodied, so stop.

I get well-meaning people and you can mean well all you want, but it doesn’t make it right. I get told that I’m so lucky to not have to work when I would love to work. I have hopes and dreams and I will never achieve them. I’ve had to rework my whole life at age 27. When I graduated high school nine years ago, by now I expected to have my master’s degree and a job. A husband. A life. And I don’t even have an associate’s degree.

I feel so empty. So hopeless. I feel like there is no answer, there is no cure. I find myself longing for relief from the pain. To not have to take over two dozen medications daily to JUST be able to function. And to have days where I can’t even function because I’m too sick to keep down said medications.

It isn’t a life I would wish on anyone. At first glance, I look normal. When I have my crutches, which is most of the time, you may think that I just have a walking impediment. But it’s so much more. My life is so much more.

I long for answers…knowing is better than not knowing. I’m sick of being referred from specialist to specialist, just to be told that once again, they don’t know.

It’s so tiring. It’s so overwhelming.

But this is my life. This is it.

One thought on “Rare Disease Day 2015

  1. Hi!

    First I would like to tell you that you are very brave to share all this personal stuff. Few people have the courage to be vulnerable like that. But you just want others to understand you, right? To have someone who understand what are you going through. Sharing helps to feel a little bit better.

    I can’t say that I know what is like to be in your position, because we all have unique experiences, but I have also gone through similar problems. When I was 9 years old I had a spinal injury and lost my ability to walk. Before I was one of the fastest runners in my class and I was really proud of my legs so I lost all my confidence after the accident. My legs were completely atrophied after 2 months and I was horrified by all this. And It didn’t stop there, because I spent a lot of time in hospitals with several medical conditions (bedsores etc), I even burned my legs twice and once I had to get a skin transfusion. I have also had phantom pain in my legs ever since (when I have fever or something I can’t sleep at all, because it is greatly amplified)

    I have had 7 operations in total, but the physical problems are not so bad as social problems and depression. Being in school was worst for me. In the beginning my classmates were quite friendly, but later they saw that I was a completely different person. I was very closed and shy, so they started to lose respect for me. After some time had passed I was bullied basically every day in some way. Boys were very mean to me, some even didn’t want to have eye contact with me and shouted that I should look away (like I wasn’t a person worth talking to) I also suffered from some physical abuse and one guy told me that I completely deserved my accident (that was too cruel and I probably never forget it, but I don’t hold any grudge – he didn’t know what he was doing) Girls also avoided me and no one really stood up for me.

    Luckily I had some childhood friends, who didn’t abandon me and they often invited me outside, although I didn’t really say a word for a long time. My social skills were bad and I felt I was too different. I just listened to them. But I often felt that I was invisible and If I had disappeared, they wouldn’t have noticed. So as you can tell It wasn’t very fun with me, but I’m so thankful they still considered my as their friend.

    But the worst thing… was that I didn’t have good relationship with my family as well. I lived mostly with my mother and some years with my brother as well. My brother was 18 years old and he wanted to live his own life and when I needed attention he often got upset and we had fights. And I had so many conflicts with my mother, who had higher expectations of me. She wanted me to train, take care of myself, study a lot etc.. But mostly I just played computer games. Virtual world was the only place I could escape to in the past (I felt normal there), but that caused a lot of problems. She often turned it off by force, shouted at me etc.. I know she just wanted best for me, but she didn’t understand what I was going through.. No one really understood me actually and I didn’t really talk to anyone either, I kept everything inside, all that pain. I only cried privately in my room.

    So It was quite tough.. I didn’t know how to help myself. I just hated my life and wished I was never born or something. I blamed myself for my accident and felt that I only made everyone’s lives worse. Many times I even thought about suicide and I cut myself a couple of times, once tried swallowing some pills etc.. It was crazy.. I was so messed up and I still didn’t talk to anyone about this.

    But then something changed… I found something powerful inside me with the help of great sadness. I felt empathy towards myself. I was so sorry about everything what happened to me. I wished that everything was different. I felt my life couldn’t end like that. That there was still something.. to be discovered. I started to feel hope. I decided I wouldn’t give up. I chose to be strong.

    That was a huge change for me.. I believe I lost my ego at that point. A door was opened. After some time I met with one of my brother’s friends and she gifted me some books to read (like “Messages From Your Angels” by Doreen Virtue) I discovered a totally new world after reading these books. My perspective changed. I started to become more positive about my life. Finally I thought that maybe there was some kind of purpose for everything. I opened up to this possibility. And I stopped being a victim. I chose to create my own life, my own destiny. At one point I also saw many other persons with disabilities, who inspired me a lot. I felt that they were completely normal, but just different. They showed me that life can be lived differently. And for the first time I though that being in a wheelchair can be cool. Challenging, but still cool. And I realized that everything starts with believing in yourself.

    I discovered how our thoughts play such a big role in our lives. And I chose to think mostly positive thoughts. I saw the movie “The Secret”, which inspired me a lot (You should definitely watch it too)
    And well everything changed after that. Just like that. With the decision to be brave.

    I started to notice that my relationships were also changing. Boys in school weren’t so mean to me anymore (although they also got older), everything looked brighter. Good things were starting to happen to me.
    And I got very solid proof that everything starts inside ourselves. We create the world from inside. When you change your attitude and thoughts, your life also changes.

    Oh god this is getting long.. I have so much to share (I should better create a new English blog – I have mostly written in my native language, which is Estonian)

    Anyway… Just believe in yourself! Everything can be changed and healed. It all starts by accepting yourself as you are, feeling gratitude towards your life. As you can clearly see, negative thoughts won’t help you. It’s like an endless cycle if you don’t stop your negative thinking. You create your own reality and like attracts like.

    Some tips.. Check out the movie “Peaceful Warrior”, and I also recommend to read Eckhart Tolle’s books like “Power of Now”. This will really help you with stress and mental issues. Mental suffering is a lot worse than physical diseases/pain. When the spirit is healed, the body can follow.

    About health choices.. start to research about nutrition. Watch movies like Cowspiracy, Forks Over Knives, Fat, Sick & Nearly Dead. Learn about vegan diet (more raw food would really help you) and healthy lifestyle. People have healed all kinds of things with this diet. You may not like this idea at first, but trust me, It would get you in the right direction. Just be open! It’s clear that old things don’t work. Medical science only destroys people unfortunately. Doctors are just taught to give pills and suppress symptoms, they don’t really understand the human body. Everything happens for a reason! When our bodies are “having a war”, they are not wrong! Human body is extremely intelligent and it wouldn’t hurt itself like that. It only does what’s necessary. Change your life style and your problems will start to disappear, although It can take some time. When we stop putting garbage inside ourselves, our bodies will naturally start healing everything. With our help it can have necessary resources to heal. If we just stop filling it with more toxins, chemicals and junk food.
    Alkalize your body and you will see miracles like I have seen 🙂 I still have some issues, but everything is improving. I have a lot of faith in myself. I believe that one day I will start even walking again 🙂 I can walk short distances with crutches already and I keep improving every day. Everything changed once I learned to love myself and create my own reality!

    You can see some videos of mine: https://www.youtube.com/channel/UCgVI7GdLsZo_sy8TOpStnqg/videos – I don’t have anything else right now. But I think I’ll start writing more and maybe even create new videos to inspire people.

    I wish you all the best! You can do it! 😉

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