Old 09-27-2018, 12:19 AM   #1
DN_Catastrophic
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Default 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!!

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Old 09-27-2018, 01:00 AM   #2
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Default Re: The Strength to Overcome Disease

Sorry for the accidentally posting earlier, I slipped on the post button haha
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Old 09-27-2018, 01:20 AM   #3
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Welcome back ! :)
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Old 09-27-2018, 01:27 AM   #4
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Default Re: The Strength to Overcome Disease

Truly an amazing story, and an insane motivational piece on how to overcome when life deals you a bad hand. You are truly an inspirational person, have an amazing girlfriend, and don't let anyone, anywhere tell you otherwise my dude.
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Old 09-27-2018, 07:32 AM   #5
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Default Re: The Strength to Overcome Disease

Hey man thank you for sharing your story. Any form of disease that attacks muscles is super scary, and in your case fatal. I'm currently waiting on lab results from a muscle biopsy, and don't have something this dangerous, but the muscle weakness I'm experiencing sucks a lot. And it has also gotten gradually worse. I'm glad I've started seeing doctors before it gets ultra bad, I always thought I was just weak because I didn't work out, or didn't eat right, but so far they've confirmed that that's definitely not the case.

I'm glad to hear you've made it through, it's inspiring that you could come back from what seems like pretty much the worst case scenario! Your girlfriend, friends and family all sound like awesome and supportive people. I hope the best for you my friend!

If you have the time maybe we can talk about this I would love to hear more.

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Old 09-27-2018, 08:48 AM   #6
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Originally Posted by icontrolyourworld View Post
Hey man thank you for sharing your story. Any form of disease that attacks muscles is super scary, and in your case fatal. I'm currently waiting on lab results from a muscle biopsy, and don't have something this dangerous, but the muscle weakness I'm experiencing sucks a lot. And it has also gotten gradually worse. I'm glad I've started seeing doctors before it gets ultra bad, I always thought I was just weak because I didn't work out, or didn't eat right, but so far they've confirmed that that's definitely not the case.

I'm glad to hear you've made it through, it's inspiring that you could come back from what seems like pretty much the worst case scenario! Your girlfriend, friends and family all sound like awesome and supportive people. I hope the best for you my friend!

If you have the time maybe we can talk about this I would love to hear more.
I would never wish this upon anyone nor would I say you have what I have, but you are taking the right steps! Before I admitted myself I began to feel a back pain that till this day hasnít gone away and not a single doctor is able to give me a reason why. As it got worse I found myself getting multiple MRIs and X-Rays with numerous spinal doctors. But once I started being able to shower the bottom half of my body or dress myself (thatís when my girlfriend started helping me) my primary doctor told me it was time. Again Iím not saying you have this disease, but you actively staying on top of this is the best thing you can do! Get multiple opinions and donít be afraid to listen to your gut! When they told me it was nothing serious and I just needed a single shot or just needed to go to a few therapy sessions that lit up a huge red flag in my mind !

Ask me anything because if thereís anything I can do to help someone or save someoneís life, that would mean the world to me! Iíve heard so many stories of people with this and other diseases that ignored the symptoms and didnít make it because it was too late!

Also, to anyone that doesnít have medical insurance I really recommend it ! For me only having to pay $1000 of an over a million dollar medical bill is absolutely insane.

Iím grateful I can inspire even if just one person and I can only hope other read this as well! =]
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Old 09-27-2018, 09:15 AM   #7
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Default Re: The Strength to Overcome Disease

Welcome back, and it's really cool you're still around to share this.

Congrats on getting through hopefully the worst of it.
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