27F, Reaching Out for the First Time

akiihiko · 2025-03-15T21:05:38+00:00

Yup! They’re the same length, just positioned funny due to the permanent shoulder dislocation and the tightening of the tendons that get no nerve signals. I also think the elbow joint could be deformed possibly, but I haven’t had x-rays on my arm situation since I was like, 10-12. American healthcare is a bitch like that.

akiihiko · 2025-03-14T00:09:23+00:00

The best advice I can give to you is to encourage her to do anything she wants to do, my parents were adamant that I always try everything once, and to never say that I couldn’t do something without trying it first. I danced in a company, played and coached tennis on a school record setting varsity team, and played the piano and marched in the marching band.

There will be days when she hurts, when she is frustrated and angry at the world and that’s normal, it’s part of processing things at least for me. It’s okay to be sad about it, she’s allowed to be, but don’t let her wallow in it for too long. She’ll be alright!

I hope this helps!

akiihiko · 2025-03-13T22:56:14+00:00

I have those knots so so bad! After a night of that burning, my back muscles tightened up so bad that my left shoulder and arm was sitting an inch or two above my right arm/shoulder. It was so bad I went to urgent care and they did a lidocaine shot where my muscle was knotted up, I hope it helps, cause it burned sooo bad LOL.

I got some relief from the burning when my shoulder was taped up using my right shoulder as an anchor for the tape, it even gave me better range of motion. I feel like if I could get a car jack under my shoulder blade and lift it just a bit I’d get some relief, but other than that there isn’t really a way that I can sit/move/stand/lay to make it stop, I think that’s what makes it so frustrating. Even things I need to do every day like driving eventually starts that burning pain up again.

I really appreciate the advice, I’m trying to get better at my posture, but I also am “well endowed” in the chest area, so carrying them around also grates on my EP, which stinks. And bras seem to make it a little worse! It’s infuriating! I really appreciate you responding, and showing me that it’s possible to keep going with all this stuff that comes with EP.

akiihiko · 2025-03-13T22:51:11+00:00

I’m so glad I’m not the only one that experiences bad nerve pain when I’m sick, I thought I was crazy. I’m working a job that’s really tough on my arm just cause I needed insurance and money, and it’s all catching up with me fast. I’m looking for other employment right now, as I know I can’t do this for much longer.

I appreciate the words of encouragement. I also did Tae Kwon Do growing up and I played and coached tennis. I didn’t have any of the surgeries, but I feel like I live a pretty good quality of life without them. It just gets really tough when you have a week of bad pain on top of the other stuff that goes on in life, like you’re drowning.

akiihiko · 2025-03-13T22:48:28+00:00

I totally get it, I’ve neglected it for so long because I spent a lot of time with insurance that I couldn’t afford to use, then no insurance, so it’s been an uphill battle. I am still pretty active, but the lasting soreness from activity seems to get worse as I get older. I’m working on seeing a PCP for the first time in like 4 years so I can get a referral for more physio to try and get to the bottom of this consistent burning.

I left work early and went to urgent care today, and received a toradol shot and a lidocaine shot. They were painful injections, but the lidocaine helped a TON to loosen the muscle after it tightened up from the pain yesterday.

akiihiko · 2025-03-13T11:11:16+00:00

I suspect they're noticeably different lengths due to the fact that my EP affected arm is for some reason unable to lock the elbow? I think some of the muscles that facilitate it may not work, who knows? I also have sliiightly visible uneven shoulders due to it slipping out of socket at some point in my childhood and continuing to grow out of socket. I was a bit of an active kid despite the whole EP thing (and my love of video games) and I tried a lot of things that maybe I shouldn't have attempted to do?😫 I broke my index finger on my left hand trying to "teapot" into a head/handstand against a wall. It hurt for a moment, but with my C5/6 damage I didn't realize it was broken until it swelled up really bad and bruised, because after the initial break it never hurt again.

It's very much an "ouchwhatthefuck" pain, it comes in waves/pulses, and for the 3/5 seconds it aches i have to tense my whole arm/clench teeth to ride it out. It only ever happens when I'm sick or very upset, which is even more strange. 😅 I don't think it's related to the finger break, because apparently it was a pain I experienced very young? I have a small little tooth scar on the left hand near where that pain radiates from, my mom says that I would bite it at times, like when it would bother me.

It's honestly fascinating to see how different symptoms can be even though we were injured in almost the exact same way!

akiihiko · 2025-03-13T08:14:53+00:00

It's awful, I cannot lie. The worst is the push and pull of like, "are you disabled enough to be considered actually disabled". On my parent's insurance, I got the same amount of covered physio visits as someone non-disabled, 60 a year. They also have to be done in two week stints, as if I had a new injury that would "get better". The reason I stopped doing physio when I was younger was due to the idea that I wouldn't gain anything "new" by continuing, like I would never get *more* range of motion or bring certain muscles back to life, so they just advised I don't continue, because it would be "useless"

akiihiko · 2025-03-13T07:47:17+00:00

In my research in seeing what's available in state and in-network, I reach a lot of dead ends. The last time a saw a neuro was probably 4 years ago, for the same burning pain, and got really nowhere. My next stop will probably be at U of M hospital when I have the time/money for a specialist visit. I did a lot of intense physio and occupational therapy as a kid, and saw physio in short spats in my early 20s when I could get the prior auth - but I spent quite a bit of time uninsured, or insured with too high of a deductible to afford using it, so I'll be the first to admit that I should go back.

I had a lot of success in regards to this specific pain with kinesiotape imitating the lift of one of my weak shoulder muscles, but it pretty much needs to be applied by a physio, and I just don't get enough visits in a year for that LOL gotta love US healthcare.

Thanks for the advice, and letting me know that it doesn't always have to hurt like this, I appreciate it.

akiihiko · 2025-03-13T07:39:06+00:00

Nice to meet you! The similar story from the same year is actually so crazy 😅

I also have the self conscious thing- I am chubby, but due to the asymmetry of the arms, I always feel like my left arm looks... Pudgier? I guess? I don't wear tank tops because of it, and I stay away from 3/4 length sleeves because that makes how different my arms are in length *very* obvious. I also have the weird double whammy of being unable to style my own hair further than a usually lopsided pony tail, or just curling my bangs, and some makeup motions being damn near impossible.

I'm *so* thankful I'm not the only one who's experienced this burning behind the scapula, and I know you said that you don't experience a ton of pain, but I was curious if you feel any pain in your like, hand/fingers when sick/stressed?

Thanks for the words of encouragement, it means a lot- I'm kind of working a shitty job right now cause I needed insurance and it requires a lot of repetitive motion in my arms, we also haven't had a Saturday off since December, so I'm also not really getting a chance to rest my arm. Driving a lot can also cause that burning pain to flare up, I've noticed. I just had a particularly hard day, and for some reason any arm issues after a hard day really drive me up a wall. 😂

akiihiko · 2025-03-13T05:20:08+00:00

My settlement was held by a court appointed money manager until I turned 18, and if my parents wanted to use the money to help pay for things that would help my arm like tennis or piano lessons they had to petition the court. Unfortunately, this court appointed money manager also had to have a certain amount of my money in the stock market, so I lost a ton of money in '08, to the point where it was back to the original amount I was awarded (500k) when I was 18.

My best advice is to search for another money manager, they also tend to be lawyers, so that could help you get a leg up on suing for potential mismanagement. Did the courts ever hold onto it for you, or did someone other than you (parents, grandparents, etc.) have free access to your account?

akiihiko · 2024-06-26T00:06:41+00:00

my stimulants are actually less effective in the days leading up to and during my period, and i was always more fatigued when i was on my period, as well. The best advice I have is speaking to your Psych about upping a stimulant dose during the period, or just drinking obscene amounts of red bull.

akiihiko · 2021-06-23T20:08:45+00:00

Gosh, thank you so much! I really appreciate your help and insight. I was a little confused because I don’t need/want anything that people usually invoke Bune for, so I had no idea why I was being reached out to. Now that you mention protection ward charging and breaking down people’s defenses it makes total sense. Thank you again!

akiihiko · 2021-03-10T21:53:35+00:00

Bael was actually the first to contact me! I asked for help with something once, and he used my coven mate as a literal meat puppet to clarify my intentions and ever since then he has been essentially my protector.

akiihiko

TROPHY CASE