Whoever said this condition is non-progressive clearly has not been on Tumblr and have read through all of the AMC related post! Seems like most of my fellow AMC tumblr friends seem to be in as much pain as I am. The pain only seems to get worse as I get older. And the worst part is majority of the doctors don’t know what to do with us!
I’m writing this because I had some severe muscle spasms and back pain tonight. Seems like I can’t do something as simple as putting away my clothes or making my bed without ending up in pain afterwards. Since when did day to day activities get so hard?! Why do my muscles hate me so much from just walking from my room to the kitchen?!
Today I cleaned my room. Took me all day and I’m still not done. I’m soooo sore from this. It sucks that I get extremely tired after 5 minutes and need to sit down and take a break. It sucks even more when I can’t tell my family I’m in pain because they think the solution is to move around more. Did you not understand that I was active for a few minutes and I’m in this much pain?! And you want me to move around more?!
Also sucks when pain medication does nothing for you anymore.
Now I get to lay here again not being able to sleep because my body is deciding it wants to throb and burst with pain.
My thighs and hips hurt soooo much tonight :( I need a personal masseust. #inpaineveryday
Just had my sister rub tiger balm all over my lower back. It’s killing me tonight :( the left side has been hurting for days and I’m kind of used to it by now. Then it acted up again really bad two days ago. I think it’s because I pulled a muscle when I was hanging my clothes in my closet. I figured since my doctor said the pain is most likely coming from my weak joints, that reaching up to hang bothered it. Then today as I was walking I started to get really bad pain in the same area but on the ride side of my back. I’ve never had pain there before. I think this one might be due to me trying to reach to turn my fan off. Whatever it is it sucks. I’ve literally had to crawl in bed and put a pillow under my back and not move. It even bothers me to stand straight up. I feel like I’m walking around hunch backed :( I just wish my stupid insurance would hurry up and approve the procedure my doctor wants to do to see if it helps any. Pain sucks.
So I know it’s been a while since I’ve blogged and I apologize. A lot has been going on. But have no fear, I’m here to let the 5 people that actually read this blog (who are all awesome btw!) what’s going on in my life.
- I left my job. It was beginning to be too much for me and with my health kind of being up and down I decided it was for the best to resign. Sucks not getting a monthly paycheck but work was becoming exhausting mentally and physically. I’m still doing freelance though, so if you know anyone looking for an illustrator or graphic designer send them my way pretty please!
- As I mentioned above, my health has kind of been like a roller coaster as of late :( I’m in a lot more pain than usual and most days nothing seems to help. The two biggest problems have been my back and leg. My spine doctor told me my joints are deteriorating which is why I’m so uncomfortable most of the time :( He was going to do a procedure but things got postponed so now I’m just waiting. And as for my leg, well it’s just been all out of whack since I fractured it last summer. I can’t bare weight on it for a long period and I think I stepped on it wrong when I was walking earlier and bam! Instant pain :( Now I’m lying here with my leg elevated, rubbing tiger balm and taking a pain killer.
- Dating. Yeah, it’s confusing. It sucks and it’s fun and exciting, but mostly it’s just confusing. Since my break up I’ve been talking to dudes and everything’s good usually up until the part where I tell them I’m in a wheelchair. Then they fall on the face of the earth. For the few guys that make it past that round, the awkwardness grows on the first date then I usually don’t here from them anymore either. Though most of my luck has been shitty, things started looking up when I met someone I started to really like. We went on a few (I guess they were dates, I looked at them as hanging out) dates and things were really great. I was happy, even if it didn’t last very long. And I was sort of excited and proud that I was able to snag an able bodied guy (not that it really matters, I just don’t like people who think handicapped people should only date other handicapped people). But without going into specifics we didn’t end up working and that sorta bummed me out but hey, it was fun while it lasted! Yeah though, being disabled and dating just confuses me. People are so strange in what they want as an ideal partner and aren’t willing to be open minded. It’s weird.
- I got a new toaster oven! Lol I know it’s lame but I’m actually really excited about this. I’m not able to reach the over in my kitchen and my hands aren’t the sturdiest and it sucks because I love to cook, especially bake. A friend has been telling me for months that I should get one and it will make my life so much easier so I finally caved. I tried it for the first time tonight and it wasn’t too difficult for me, so I’m excited to bake all sorts of things!!!
So yeah, that’s what’s been going on. I’ll probably be drawing a lot more now that I have the time. I know it’s not directly related to disability but if you guys wanna check out my website: www.melissasanchezart.com (which I’m actually updating atm so maybe give me a day lol) or follow my art related blog: www.musicislove.tumblr.com I’d really appreciate it! And ya know if you like anything you see I have a link to my web store! I have super cheap prints for sale!! Plus I take commissions so if you like want a cat driving a car or Dr. Who time traveling to King’s Landing shoot me an email.
Well that’s it for now. Hope everyone has a good weekend :)
Question: would you guys buy/want to read a book written by some with Arthrogryposis/a physical disability of their struggles and adventures in life?
Can’t sleep tonight because of this >:/
Stupid scoliosis and uneven hips, making my lower back hurt!
Someone come massage it for me please.
Note to self: when saying riding a roller coaster is a good idea when your legs don’t bend, it’s not a good idea.
It’s kinda cold here. I climbed in bed and brought an extra blanket. My leg and hip are now aching :( Don’t wanna move.
EDIT: Now my wrist is hurting too :/ Stupid cold.
I don’t think I’m a great artist. I know I’m not. I know there’s people out there who are way better than me.
I may not get the high level jobs. I may only sell a single print every few months. I may never go anywhere with my art. People may not like it.
But I do my art for me. I draw what I…
Coldness has finally hit CA and my leg really hurts. I hate that my bones ache in the cold. Sucks more that as I get older I hurt more. I could barely walk on my left leg tonight and every arm movement I made brought cracks and pops.
Today I went to another Michael’s and like that this one is a little more open then the one I usually go to. The lines to pay were nice and wide for my wheelchair to fit through. Though I spent way too much money there buying paint and stuff. Needed supplies. Lately I’ve been pouring all my energy from the break up into my art which I guess is a good thing.
Sunday I hung out with my friend we went to lunch and shopping. I hate that my muscles are week and because of this I can’t control my urges to use the restroom at times. I absolutely hate it. I almost had an accident while out. I hate that I’m completely fine one minute then out of nowhere I have the sudden urge to use the restroom and I have about 2 minutes to get to one before things take a turn for the worse. We were in the parking structure when it hit me so my friend had to pull in front of the store and unload my chair quick while I wheeled as fast as possible to the restroom. Of course the restrooms at Nordstroms are on the 3 rd floor and of course the elevator was taking forever. I don’t know how I held it but I’m glad I made it in time. Accidents for me are the worst. They’re embarrassing as hell. I know my good friends understand that I can’t control it and its because of my disability, but that still doesn’t mean I’m not embarrassed. I don’t want to have my friends change me. I hate having to ask them to pull over randomly because I have to go to the bathroom and I can’t hold it. Even though my accidents don’t happen a lot I hate that they happen at all!
My leg still is hurting :(
I know I complain a lot but I really do have a good life and am lucky to have such understanding friends and a supportive family.