Comments: 43 • Responses: 16  • Date: 

ayedeeque10 karma

What is it like balancing life as a full time teenager and patient?

Queen-gryla7 karma

Well, a lot of "teenager-y" activities require some extra thought. I can't just go out exploring places without having to consider the accessibility of all of it. The old other thing that really gets in the way is when I have surgery I have a lot of time and physical limitations. Otherwise, I feel pretty normal. Schoolwork and AP classes are my true limitations.

arpsazombie5 karma

I also have pretty severe scoliosis and a few other issues, not as serious as yours though. Do you have much pain, and how are they addressing it?

Queen-gryla5 karma

I sometimes experience some stiffness and discomfort from sitting and such due to my abnormal posture, but most of my pain comes from my screwy nerves. I am currently on muscle relaxers and neuropathy meds, and when it gets really bad after surgeries I am put on opioids and all types of crap (which doesn't really ever put a dent in it). Otherwise, I just take the normal ibuprofen or aspirin. My pain tolerance is really high, so ignoring pain is also really easy for me.

arpsazombie4 karma

Has PT or massage helped you any?

Queen-gryla4 karma

PT has helped recover a lot of core and hip strength (my damage is considered T12 incomplete), and massages have helped with swelling in my legs, along with sensation and neuropathy. I currently attend physical therapy twice a week.

arpsazombie3 karma

I in addition to spine issues I have Multiple Sclerosis, so nerve pain, neuropathy etc are also issues for me. I'm just looking at how other people deal since most everything hasn't really worked for me.

Thank you for responding! Best of luck in everything.

Queen-gryla5 karma

Oh, wow! You can also try stuff like meditation and listen to music or "white sounds." Try to distract yourself as much as possible and focus on everything but the pain. I understand the medicine not really working thing. Baclofen has been doing really nothing for my worsening dystonia, and once the nerve pain and spasms start up they last for days. I hope you find something that works for you to manage pain! Thank you for asking!

Friedso4 karma

Hey there! This may sound dumb, but how did it feel when you found out you had all those disorders?

Queen-gryla6 karma

Hey! I was around three years old, and all I thought about was how scary the MRI looked. I've actually been quite interested in them my entire life, so I think they're pretty fun to learn and talk about.

Lizbot73 karma

I can see from your other responses that being in a wheelchair doesn't really bother you, so what would you say is your biggest challenge day to day?

Queen-gryla1 karma

My biggest challenge would probably just be things in the way, such as the lack of ramps on public, spaces being too narrow to get through, things being out of reach, etc.

bigoted_bill3 karma

With the down time you experience after surgeries, what do you do ? Are you a gamer?

Queen-gryla1 karma

I've only ever played Fallout 3 and New Vegas (still need to play Fallout 4), but I read about science and stuff (currently Michio Kaku's books), I play my clarinets, I work, and I hang out with friends.

Oxyapap3 karma

That's quite the list. Have you been able to walk in the past? Do you plan/hope to walk again? What will you be going to school for after high school?

Queen-gryla14 karma

I ambulated normally up until my surgery in February of 2015. Then, I walked with a cane and later a walker as another tethering caused me to digress again. I don't think I will ever actually walk again, and honestly it doesn't bother me. I've felt way more freedom in my wheelchair because my arms are pretty strong (carrying my around all day) and won't give out on my or tire easily like my legs have in the past. I can walk with a walker using special bracing and using my hips to move, but not very far. As for college, I plan on going to a University if Texas campus and later going to medical school to become a pediatric neurologist :)

Oxyapap3 karma

Cool :) Work hard, stay out of trouble haha

Queen-gryla2 karma

I can't make any guarantees, but I'll try, haha.

Psychwrite2 karma

Hey I don't really have a question, just wanted to point out that you won't get very many responses this time of day. 8 or 9amCST is pretty much prime posting hour. Since top level posts are supposed to have a question though:

How's your night/day going?

Queen-gryla1 karma

I figured, ha ha. I just had the urge to post at that time, so I acted upon it. My night was/is going pretty well :)

severinskulls2 karma

I just want to say that your attitude and outlook that comes through in the way your write is inspiring and incredible. I get the sense that overall you don't have the typical "woe is me" outlook that many people (understandably) do when they find themselves physically disabled. Are there times you ever feel frustrated by your conditions? Are there things you want to do that you can't? And lastly, to what do you think, do you owe your positive outlook? Is it something you were born with, or have you learned it through having to deal with these conditions?

you are very inspiring and I just want to say good luck in life, many people could learn a thing or two from you I think!

Queen-gryla1 karma

In September, when it became apparent that I may never walk again, I was easily frustrated and angry with my problems and having to adapt to my then-new condition. One thing I would like to do more of is run and be more active in exercise, since I (ironically) love physical exertion and being active, but I can easily adapt by being active with my arms and in my wheelchair. I actually did a 5k in February in my wheelchair. For the last question, I'd say both. I've always had to deal with being a bit stunted physically, so I've always had to have patience with my legs and deal with what I have, but I have also had to learn more adaptation and problem solving skills in the past year. Thank you so much! I try, ha ha. Thank you for commenting!

Sneaton132 karma

Thanks for doing this AMA, and i wish you the best of luck with everything!

My question is: What's the best piece of advice you could ever give someone?

Queen-gryla1 karma

My best advice would be to find the positive in every situation. Seeing the benefits of my condition has helped me get through the harder times, and seeing the freedoms I've gained with my wheelchair has made me a much more confident person.

WrexEverything2 karma

I hope this isn't too personal a question, but how do you handle the "looks" you get from strangers (if you do get them)? (ie) that small moment where they realize you're in a wheelchair and have an almost apologetic look on their face?

My neice is paralysed waist down and recently confided in me that she's finding it awkward to see people looking at her like that. Any advice would be welcome. Thanks :)

Queen-gryla1 karma

I've become more tolerant of people looking, but it always annoys me to a degree. I don't stare at people for having braces because my teeth are straight, so why should my case be any different? Usually, I just smile back (or glare, depending on how pissed off I am), and if they want to ask about my condition I am very open and willing to explain everything that happened. I don't like it when they apologise, because I love my life and being in a wheelchair is not a death sentence.

ninetiesplease2 karma

What's your favorite thing to do in your free time?

Ps thanks for doing this AMA you seem really cool! Keep up the good work in school

Queen-gryla1 karma

My favorite thing to do in my free time at the moment is reading both nonfiction science stuff (I've been engrossed in Michio Kaku these past couple days) and reading "scary" stories, such as on r/nosleep (mainly at night—I enjoy that thrill of being scared). Thank you for commenting! And I'll try, ha ha

iamdiddy2 karma

Do you have any aspirations for the future providing you can?

Queen-gryla1 karma

I plan to go to college and medical school and become a pediatric neurologist.

Bingersmack2 karma

So what happened here then?

Queen-gryla1 karma

Could you elaborate a little? I'm having trouble understanding your question.