Hello once again, Steemit. It’s been 10 months, but I’m back to continue my not-so-interesting tale. I’ve had some ups and downs since then, though mostly ups with some amazing medical developments that I’ll be more than happy to share. So sit tight, ‘cause it will probably be a long one!
(You can read the first part here https://steemit.com/introduceyourself/@iamjmgx/hello-steemit-i-m-a-30-year-old-student-gamer-nerd-with-a-disability-who-wants-to-share-his-story if you haven’t already!)
I guess I’ll probably start with the medical development I previously mentioned. To keep the story short and sweet, there is finally an FDA approved treatment for my condition (spinal muscular atrophy). This is actually huge news because it’s a treatment for a genetic condition that is essentially a cure. Though SMA varies in severity (Types I – IV), with Type I being mortal for infants, and Type III – IV resulting in a typical and normal lifespan, this treatment not only halts the progression of the symptoms, but actually improves the condition of patients! I cannot stress enough how big this actually is.
Of course, in my case, administering and providing the treatment is a different case. Because I had a spinal fusion performed at a young age, which is essentially a whole bunch of metal rods in my back to keep my spine straight, administering the treatment is possibly out of the question. Normally, the medication would be introduced via intrathecal injection (directly to the spine), but this proves to be a challenge in my case. Luckily, my doctors are devising an alternative which seems to work (I might be a guinea pig…), but what choice do I have? A neurosurgeon plans to implant a pump/reservoir in my back, which is directly attached to my spine with a permanent intrathecal injection. This is necessary because the treatment is ongoing, with the medication being administered 3 times per year for the rest of my life.
Fortunately for me, I’ve kept myself relatively good health, and the procedure isn’t all that complicated, so my doctors are very positive about the whole treatment and are doing their best to get me the medication (it is extremely costly, so yeah D:), but everything seems to be going in the right direction. Hopefully, I can write about this in a year from now with super positive results, such as increased mobility/strength, improved lung capacity, etc. These are all very hopeful dreams of mine, and likely very far-fetched, but why not? Babies who are expected to be 100% immobile by the age of 2, and are on respiratory systems are now walking and breathing on their own. In short, I plan on remaining positive! Moving on…
So I finally graduated and received my bachelor’s degree (business administration). I’m obviously very happy, though I’ve been having trouble finding work from home. I’ve been job hunting for a little over 3 months now, with little to no success. Still, I’ve had a few interviews (via Skype) where things go relatively well, but I don’t end up landing the job. I keep telling myself it’s expected, given that we have a massive competitive market and a huge influx of recent graduates. Whatever, the fight goes on! I’ll be enrolling in an MBA program in the fall, and I’m hoping that will help with potential employers. I’ve pretty much given up on low-level management opportunities and I’m aiming for anything in customer service that pays competitively. Regardless, I remain hopeful and I’m sure I’ll find something nice eventually. I’m not being very picky at this point, seeing as I need to start saving up money to put a down payment for a car (my car is out of commission now :/).
Oh! Something pretty cool that I recently picked up is streaming. I’ve always enjoyed watching streamers on Twitch and figured I’d give it a go. You can catch me at www.twitch.tv/jmgx so drop by and give a follow if you don’t mind! We can play some games if you’re up for it (Dota, Rainbow 6, Hearthstone and HotS)! I’ve also grown a fascination for collecting silver coins (thanks /r/Silverbugs/) and tried to pick up Ruby coding, though I’m still a complete amateur and have no idea what I’m really doing (other than following the tutorial videos).
I’ll do my best to do more regular posts, just because I do enjoy writing and interacting with readers as I normally do on Reddit/streams, so feel free to leave a comment, questions, or suggestions for future topics. It is greatly appreciated! Thanks for the read, and expect to hear from me soon…
Good for you for being resilient and positive! I wish you the best of luck with your operation. It sounds like cutting edge stuff for patients with spinal muscular atrophy. I hope to continue reading your posts to follow up on your progress. Good luck on the job hunt! You got this!
Thanks for your kind words. I'll do my best to keep you guys updated, but regardless, I will also be posting more regularly!
Welcome back!
Thanks!
Welcome back to steemit!
Follow me @digitaldollar
It's good to see you back! I hope you will continue to stay with us and share your progress. I went through a pretty rough few months myself and wrote about it here. Steemit is a wonderful place. You might like it a lot more if you stick around and share your thoughts more often.
Greetings! Follow me at https://steemit.com/@bitgeek
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