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Wednesday, July 4, 2018

Invisible not Invincible

If Only You Could See

The world of invisible diseases isn’t  a small world. Many suffer from a multitude of things that nobody can see with their own eyes. As I sit here today writing this blog the tears roll down my face because I suffer from an invisible disease. The world does not see what is happening to me. Do you know what it’s like to feel like not a single person in the world understands what you are going through? It’s not like I can even connect with someone else that has the same diagnosis as me because it presents differently in everyone. I truly feel completely alone in my world. It makes me wish sometimes it was visible so people would really understand.

The Moment You Become Completely Aware

Last night I had a moment when it all just hit me. I became completely aware of how real the possibility of this disease completely disabling me is. I am a hard worker and have worked very hard for 11 years doing jobs that demanded a lot of me and I truly loved. I was a workaholic and pretty much worked over time for the biggest majority of those 11 years. I have recently changed professions needing a less stressful and demanding job. I work less than full time and no longer do overtime. It kills me that I cant work like I used to. I truly don’t have the energy to do it anymore and that is a difficult situation to face. What’s more is I have been advised no hiking by Doctors orders, and hiking was the one thing I had that truly made me feel confident enough and strong enough to fight this.

Depression Sets In

When my moment of realization last night hit me, it was after having the worst day I have had in all my 19 years of pushing past the issues. I have had a lot of new issues arise over the course of the last 2 almost 3 months. I started going numb and swelling in my arms and legs. I have been having extreme dizziness/lightheaded blacking out for a few seconds sometimes. It seems its just getting worse and worse. It was thought to be medication related so they stopped the medicine and it got worse, I am still waiting for my Neuro appointment and all the while having worse and worse days. I do not like that I feel so bad that I don’t even want to get out of bed, or do anything enjoyable. I cant even function like I need to at work. I have to bend over and climb ladders frequently and every single time I get dizzy. I had a bad dizzy spell a week ago and woke up yesterday feeling absolutely horrible. I stayed dizzy all day and barely had any strength to move. I pushed through my day at work but it was unbelievable hard!

Making Difficult Decisions

Last night I Realized that I need to take action and make arrangements for in the event I become unable to care for myself or children. This was a devastating moment for me as my children just lost their father last Summer, If you keep up with my blogs then you read his story as well. I thought about things like, Who will care for the kids Mawmaw, Who will care for my kids, and who will care for me? I already cant hike, Dr. orders so that’s been taken away  and now I am faced with a real possibility that I may actually have to miss work or even eventually apply for disability. With a weak immune system I struggle with the real possibility of something as minor as a UTI potentially making me much sicker than it should. It seems as if all the things I enjoy in this world are slowly fading away from me. So, today I am beyond depressed. Today I am as terrified as I have ever been. Today I thought about how horrible it could be for my kids, my possibility of never having a happy loving future with someone.

Don’t You Dare Say I Am On A Pity Train

I have become increasingly more irritated with others remarks and opinions in regards to my or anyone else’s health. Those remarks of oh I know how you feel, NO YOU DON’T! If you have not been diagnosed with AS then you don’t even remotely have a clue. For the love of God please don’t refer to it as “JUST ARTHRITIS!” Yes it is in the family of arthritic type diseases, but it is MUCH more than just the pain of arthritis. It’s a whole other pain beyond that, its a loss of range of motion, its a damaging auto inflammatory, immune mimicking disease that literally attacks your entire body, its struggling every single day to fight for a life rather than wasting away in bed. I have learned a lot over the course of my year since the diagnosis was given of AS. I am learning that usually people with AS have more than one auto immune disease, I am struggling with additional symptoms constantly adding up. I hate to be medication reliant but in this case I am. There are just certain things I can’t function well without.

It’s An Invisible Disease But I’m Not Invincible


Oh how I am learning the truth of that statement. I previously wrote the blog The Only Thing Strong Enough To Kick My Ass Is Me! Well, that is very true. I felt like I had been through so much in life that nothing could knock me down for good. It sucks to think that something actually could. I am not invincible and something that nobody else can see is defeating me from the inside out. I feel like this makes me look weak, people think I am just complaining for no reason. Doing these blogs and openly talking to complete strangers or who knows how many people in the world is not easy, it’s scary. It takes guts to put out there how I really feel. To be honest about it all. Keeping it all inside isn’t healthy and I need to talk about it not just for my sake but for the sake of others who suffer as well. See some things just don’t get a lot of recognition and they need awareness. People really need to truly understand what this does to people. So I sacrifice my pride on the chance of being viewed as a complaining, attention seeker on a pity train. I don’t care if anyone feels sorry for me, I don’t need anyone to feel sorry for me. What I want to achieve is a fast diagnosis process, more knowledge of these kinds of diseases. Awareness and support for those who do suffer in silence and out load! Believe me my vocal cries of this life altering diagnosis is way more than just a way for me to attempt to heal my soul, it’s genuinely a battle to bring better solutions to all my fellow warriors

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