neuropathies

In Which Healthy People Don't Understand That Management Is Not A Cure
  • Friend: What's up?
  • Me: I just got out of the shower, so, you know... sitting here trying not to pass out or throw up.
  • Friend: I thought you said the shower chair helps?
  • Me: It does.
  • Friend: Then why aren't you better?
I need more people to follow!

i’m a gay intersex trans man. i use a wheelchair and i’m chronically ill (ehlers-danlos, POTS, neuropathy, MCAD) and neuroatypical (OCD, ADHD, autism, sensory processing disorder).

please rb this if
- you’re gay, trans, and/or intersex (especially if you’re transmasc)
or
- you have any of the conditions i have or you’re a wheelchair user

Quick check in

Hi sweetlings! I know i said i’d be gone for a bit, but i needed to say a few things about what’s been going on in my life before i take my hiatus.

I saw my neurologist this morning. To my dismay, i possibly have 1 of 3 things.
Neuropathy, multiple sclerosis, or fibromyalgia. I’m getting tests done this week to rule out the first two (oh please rule out the first two.) But for now I have a few days to worry myself to death! Any advice, good thoughts and prayers are most welcome at this time.

Hopefully this all gets figured out soon so i can begin bettering the physical aspect of my life. Until then, i need some insight and support.

Thank you all for being so wonderful and helpful lately. I love you all!!

I know there has been quite a lot of controversy regarding the latest Marvel blockbuster, Doctor Strange due to the casting choice of the Ancient One being a white woman. But I am offering you to stop thinking about the controversies and just listen to me for a second–this movie hit really close to home. At least, for me.

I have Peripheral Neuropathy. The specific type of peripheral neuropathy is still unknown until I run further tests, but all I know is that this illness has affected my life in many ways that I have never thought possible. I was a skilled guitarist, and a fervent artist who specialized in digital art. I was always in a creative, ongoing flame that never seemed to burn out. That was, until one day, my autoimmune thyroid–I didn’t know I had that at the time– created hyperthyroidism in me. From a struggle with lupus (that I don’t have anymore, thank God) to a struggle with loosing my hair and rapidly loosing weight, my life was turned upside down out of nowhere. After controlling my wacky thyroid, I ended up with sharp, debilitating and excruciating pains all over my hands and feet. I couldn’t move, I couldn’t think straight, and I had to be taken to various doctors to figure out what was wrong with me. Thousands of dollars later in medical analysis, it was found that I had Peripheral Neuropathy. This was about three years ago.

And now, seeing a superhero on the big screen who was skilled in what he did, and be affected by nerve damage to the point of not being able to do what he loved and was pushed to the limit to find a new purpose in life… really, really hit close to home for me. I had never felt so connected, so understood in a movie. I went through what Strange did. I, too, was furious at life for taking away from me what I loved most. I couldn’t play guitar anymore, and I couldn’t draw like I used to. I used to take my skills and talents for granted, even if I worked hard to achieve them; and, when I saw Stephen Strange go through the same process I went through in regard of his development as a character, I was touched. I was angry, I was depressed, I was desperate and I wanted to try and grasp the only thing that made me, well… me. I didn’t want to let go of my talents, just like Stephen didn’t want to let go of his amazing neurosurgeon skills and the level he had worked so hard to get to. 

He was angry at life and even lashed out onto others, isolating himself… until he found the strength to change. A new purpose. He didn’t need his hands to feel fulfilled or successful. He had to let go to be able to have. And, in that sense, the movie really spoke to me. I had to let go, for at least two years, the things I loved and find myself in the midst of this chaos that had dawned upon me. Who was I, outside of music and art? Who was I, outside of the things I had dedicated my life to? And, for a moment, I was lost. Until I learned that life goes on beyond any illness, or beyond any limitation. You are your own limit. I grew in strength and in character, after so much turmoil and despair, thanks to God of course… but I found myself. And it wasn’t easy… but I love how well they represented the turmoils of not being able to do what you love anymore thanks to an illness or a disability that just comes unto you without asking for it. I was so happy to see that, finally, in a movie, someone represented people with nerve damage and that they were able to move on and find a new purpose. Because it is exactly what happened to me, and what happens to thousands of people who deal with this illness daily like I have to. 

Would I change this part of who I am? Like Stephen, he had the option to change who he was and maybe heal his hands… he could just heal himself through his magic. But he decided to stay like that… because it was a reminder for himself. That, to be able to find yourself, you have to let go. He would never forget how much he gained just by losing. And, that, in a sense, spoke to me. I would LOVE to be healed, because this illness is debilitating. It fills me with despair and depression. I am in an almost constant state of pain. But… would I change that? Of course. But… in the end, if I can’t, that’s also okay. Because it has become a part of who I am. I am stronger than Neuropathy, just as Stephen became stronger than his nerve damage.

Just a couple of thoughts out there, from the point of view of someone who has nerve damage, not only in her hands, but on her entire arms and legs, and the pain is spreading across all of my body. Sometimes we focus too much on what the movie didn’t do, that we forget about what the movie did.

Minnesota has been really nice. I haven’t said much about it yet so here goes.

The Mayo Clinic is really impressive. It is so astoundingly beautiful. The architecture is beautiful and there’s art everywhere. There’s a little heritage museum on the lobby floor and I watched a video about it and apparently the original Mayo doctors thought that state of the art buildings and art were important for healing. There are a couple beautiful Chihily pieces and an abstract mixed media and glass thing that were my favorites.

This is also the most effecient medical facility I have ever been in. The blood labs were incredible. Everyone is so nice and sweet. I had one nurse that was trying to draw my blood and nothing was coming out so she had to dig around quite a bit, and I swear it was completely painless. I was so impressed. The doctor who did my electromyograph was so nice, and it was the least painful one I’ve had so far. An electromyograph is where they insert a sonogram needle into your muscle and have you flex and relax while the needle records electric activity in your muscle. I’ve had three now and the first two were INCREDIBLY painful. This one wasn’t by any means painless, but it was the least painful one so far.

I was at the Mayo Clinic all day Wednesday and Thursday for appointments and tests. The neurologist I saw thinks that possibly celiac disease could be causing an inflammatory disease called vasculitis, which can cause nerve death. They already tested me for both celiac and vasculitis at home and I tested negative for both, but the neurologist wanted to test again because I guess they have better tests here. Altogether, I had 11 blood tests, an autonomic test (including a sweat test, two breathing tests, and a tilt table test), a nerve velocity conduction test, and the electromyograph. I go back on Monday to see a gastrointestinal specialist to further explore a celiac disease diagnosis.

Today me and my mom and sister drove to the Mall of America, about an hour away. The best part was the Lego store. I got souvineers for Sophie. I miss her so much and I keep getting reports that she’s having meltdowns at school and at different activities and I know it’s because she’s so stressed.

If I have one regret about my childhood, it is that my mom being sick robbed me of so much normalcy in my life. I never, ever wanted my daughter to have to live like this.

I’m dead tired from walking at the mall today. I was upright for about 4 hours, which is like record for me since July. I’m going to spend all day tomorrow in bed. Then Sunday I am going to meet a tumblr friend, which I am super excited about. Then Monday I go back to Mayo for the GI appointment, and then I guess after that appointment I will find out where we go from there.

Almost feeling like I got a belated birthday present today. I woke up with my legs not actively trying to kill me, for the first time in too long!

They’re still not great, but acting enough less terrible that I’m almost hesitating to get back down for the 2nd sleep shift in a while. It’s always hard to tell now what a sleep reset may do to the neuromuscular shit. But, not stretching the first shift out to much over 4 hours probably helped, and I know I’ll really be feeling it later if I don’t get some more rest.

Trying to enjoy it while it does last, though.

I am all for disabled!bucky

I want Bucky who has debilitating joint pains because of the metal arm.

I want DPD Bucky who can’t grip his identity because he has had it torn away too many times.

I want Brain Fog Bucky who can’t string a sentence together some days.

I want Intermittent Explosive Disorder Bucky who cannot control his temper because he has always be taught to hone it into violence.

I want wheel chair bound Bucky with neuropathy from too many bullet wounds.

I want PTSD Bucky who can’t leave the house some days because the flashbacks are too much.

I want autoimmune disorder Bucky who’s body has not accustomed to being thrown into the new world with new allergens and has responded with histamine overload.

I want brain damaged Bucky who struggles with coordination, memory, facial recognition and speech.

I want my marvel characters to have symptoms that are realistic to their backstory/ traumas.

youtube

my occupational therapist did the coolest thing to me yesterday.

E-stim sends electric signals from electrodes on the skin into the muscles to make them contract. It’s used in people with nerve issues that cause muscle weakness to stimulate the weak muscles to strengthen them.
In this video, the only movements I’m voluntarily controlling are my facial expressions and turning my head. All other movement is the e-stim.
In the video, I have electrodes all over my neck and back on a tone reducing setting, because I have a lot of extra muscle tone in my back that is harmful. This also caused me to pull my shoulders up and back. I had electrodes on my biceps, which pulled my arms up. This was meant to strengthen my biceps, which can help the hands and forearms. The last electrodes were on my forearms, which pulled my hands down and made my hands grip to increase my (currently very poor) grip strength.

anonymous asked:

fuuuck i hate that goddamn gluten free everything trend. like humans have been eating wheat forever. get over it! It's the dumbest fad diet ever. you "went gf"... you "got stupid"

HAHHAA bitch I have Celiac’s disease. You’d know that if you glanced at the tags. That means that if I eat gluten, my body attacks itself causing intense stomach pain and migraines in my case. Celiacs leads to various types of cancer, infertility, anemia, osteoporosis, reduced spleen function, neuropathy and more neurological problems. 

But… yeah I’m “getting stupid.” 

It’s hard not to dignify school-yard taunts with a response. 

🍊✨INSURANCE HACK! 🍊✨

All too often with an invisible illness we are dismissed immediately. “Oh, but you don’t look sick,” they’ll say while judging us, simply a book by its cover, not taking the time to think about the wounds and scars we carry internally or in some cases simply a layer of clothing away. 💉💊

I mean, what does sick even look like? Let me know exactly what you think and I’ll conform next time. You know? Excuse me for attempting to be strong, positive and to reflect that on the outside, man. 😶😬😕

Moral of this story, if you’re ever dismissed by your insurance company for this “but you don’t look sick” reason following a prescribed and necessary test or treatment, simply follow the above protocol! Should they still refuse, take it to the U.S. Office of Civil Rights as a HIPAA violation. Fight for your rights! 💪✨

Hope it helps! Big love, Dan xx

im only coherent and ?happy? when im high and part of me is like thats a problem dude and then another is like how ?

idk im getting w**d tonight, i use it medicinally, it helps me focus and helps my neuropathy but i just ate 4mg of kpin and im on like A Cloud listening to nin feeling uh.. Good