Flash Flash Revolution - The Strength to Overcome Disease

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The Strength to Overcome Disease

Hello everyone,

Many of you may know me as Javi or Cata and many of you may not even have a clue to who I am. Either way this is a short story of a long battle I've been fighting through for almost a year now!

At the end of last year (2017) as healthy and strong as I was, I almost lost my life to an extremely rare and very aggressive disease called 'Dermatomyositis'. People my age (29) aren't prone to this and statistically women are at a higher risk of contracting it. It's something that just happens and doctors don't even know how we get it. Dermatomyositis is defined as "inflammation of the skin and underlying muscle tissue, involving degeneration of collagen, discoloration, and swelling, typically occurring as an autoimmune condition." So in short my body attacked itself and shut down a year ago! After being hospitalized it took about 2 weeks for dozens of doctors to finally diagnose me and inform me that even with the treatment they give me and even if I am in remission for decades to come, this can flare up in the future and it will continue to always be something I have to look out for.

I almost died a total of 5 times. I remember each and every one of those moments very vividly. At my worst my lungs, being muscles themselves, shut down and I was intubated (for those that don't know it's when they put all those tubes in your mouth to help you breath). You know it's a strength in itself coming to terms with yourself that you won't be able to eat, drink or breath on your own and for 3 entire months at that too! I did have surgery for a Tracheotomy as well as a PEG tube (a tube to put food directly into your stomach) a couple of weeks after to keep me stable while I started therapy, but having something hanging out of my neck and stomach definitely took a while to get used to.

The amount of support from family and friends I had and still continue to have is incredible, but throughout the 1 person that kept me here and still continues to fight for me as much as I'm fighting to get better is my girlfriend. I developed severe separation anxiety in the hospital (I've overcome it now that I'm at home) and I can't even begin to tell you how many panic attacks I had because of that. Some people take medicine for it, but my girlfriend was my dose of anxiety medication. She never left my side and the few times the hospital forced her away, I came extremely close to crashing. It's funny how I had to fight (unable to speak because of the tubes inside of me) for my life and for her to be by my side through the notes app on my phone. If I was in pain, I had to type it out! If I needed something, I had to make noise to get their attention.

I was lucky though, my girlfriend is in school studying Pharmachology. Yes, I had some wonderful nurses, but most of them either didn't know what they were doing or were so distracted by something else they wouldn't do their job correctly. My girlfriend caught on to their mistakes countless of times and the one time she didn't, they pushed the wrong medication in me. It didn't mix well with the 20 other meds I was taking at the time and it showed as that was 1 of the 5 times I almost died. I'm not here to bash nurses, but that was a fight I never expected to encounter. You're in there thinking everything will go smoothly, but we forget they are people just like us at any other job. It took strength to understand that and know that we couldn't rely on nurses to fully take care of me. We had medical professionals come in and train my girlfriend to do the many tasks I couldn't wait for a nurse to handle.

Life or death moments were an everyday struggle at this point and realizing that getting better is more than just treating the disease medically but mentally pushing yourself and staying strong/focused, was the hardest thing to do. I would only do it in front of my girlfriend, but I would break down and almost want to give up so many times. But seeing the support and seeing the love and care that was around me gave me and extra push to keep living. Telling myself I can breath again, telling myself I will be able to eat all my favorite food again, telling myself I'll be able to walk and speak again was all I needed to do to actually do those things! You may not believe me but that moment I told myself that I can swallow, I passed my swallow study the next day. It was incredible and from that moment on I always told myself I could. I mean I still struggle and I am slowly getting better, but without my positive mindset I would still be in the hospital.

I could tell endless stories of moments like blood shooting out of my body across the room or me seeing the light at the end of the tunnel when I was closing in on death, but those moments didn't bring me to where I am today. One day I'll be able to stand on my own again, one day I'll be able to walk more than 50 yards, one day I'll be able to go on all the trips I had to cancel this year, and one day I'll finally be able to just lay on my stomach again! I see it, I want it, and I will attain it!!

I may not be able to play FFR due to how weak I am for a long time or ever if my hands don't fully recover, but I will always love and continue to visit this community as long as it exists!!