Gonna start posting more videos on my YouTube channel.
Hey guys, I’m thinking about doing a video blog, is that something you would be interested in? You can ask me questions Arthrogryposis related or not, and you can ask as anon if you want. Just submit a question and make sure you mention it’s for the video. Once I get enough questions I’ll make the vid!
Haven’t checked in a while. Sorry about that. I was sick for two weeks and didn’t do much of anything :/
So I noticed the pain in my lower back/hip area has been acting up a lot lately, especially after I hang my clothes. Makes me think it’s the muscles being irritated when I reach up to hang things in my closet. Probably can’t hang my clothes anymore which I guess is sort of a good thing meaning I don’t have to do as much work lol. I tried again today just hanging one jacket and I gave up. It was too hard and I started to hurt :(
Speaking of pain, my doctor has switched me to a stronger medication. I don’t know if I mentioned that? Sucks the pain is getting worse. So far these pain killers are helping but I’m sure it’s only a matter of time before my body gets used to them and I again will need something stronger.
I’ve been getting tired a lot more now. I went to a show the other night and the next day I was supposed to go over a friend’s house and I just didn’t have it in me. I was too exhausted. Doing things/going out two days in a row seemed like too much on my body. That also sucks. How I managed going to shows every night in college I don’t know!
I got new AFOs/braces a few months ago and they’ve been pretty good. Today though when I was walking around the house my foot started to hurt. I don’t know if it was because I was doing a lot of walking but the side of my foot was rubbing against my brace. The bone on that foot already sticks out pretty far. I had a lot of problems with it years ago but then it went away. The pain today was in the exact same spot :( I really hope it’s not starting to come back. So now I’m just sitting here with a pain patch on it tired, preparing myself mentally for a show on Saturday, listening to Alkaline Trio.
Well that’s what’s been going on in my world. Not that exciting is it?
Having to alternate between pain patches, pills and rubs for pain sucks :/ Spent the last few hours cleaning my room and this is the result. Not pictured: the patch on my back.
Sorry I’ve been MIA. My best friends just got married so I was super busy with wedding stuff.
Here’s some pics. Ignore the fact that I look terrible….
Damn leg is killing me. Feels like it did last summer when I fractured it :/ it’s not letting me sleep and painkillers aren’t working. Gotta get up early and I’ll be gone all day tomorrow. I so hope this goes away by then!
Sorry I haven’t been writing lately. I have a lot to share I’ve just been super busy. Instead of writing it all in one super long post I decided to break it down into individual posts.
I had my annual physical today. Nothing out of the ordinary except they had to take blood. I hate getting blood drawn. They always have a hard time finding veins and it usually averages them 5-6 pokes before they get it, if they do at all. Today the nurse did 4 and gave up. :/ I have to go to the Red Cross this week and have them try there. You’d think after all these years I’d be used of getting blood drawn but I still have to look away and it’s still the one thing I have most. Funny considering I’m fine when I get my tattoos but I just hate getting blood drawn.
I was also kind of excited when I was talking to my doctor earlier because she mentioned she sees another patient with Arthrogryposis. I knew she couldn’t really give me details about the person because of patient-doctor confidentiality but she did tell me this person was older and had more severe pain than I do. I was both intrigued and terrified. My eyes lit up at the thought of someone else living in my vicinity with Arthrogryposis, someone older than me. But at the same time I worried if I too would over time have severe pain like this person because of the Arthrogryposis?
So yeah that was basically the extent of my doctors visit. Not looking forward to having them try to draw more blood this week :/ Bleh.
I hate when I can’t sleep because I’m in pain >:/
The right side of my head, jaw, shoulder and arm hurt.
I have this pain in my chest right now, just under my left breast. I’ve also been getting bad headaches the last couple of days. It’s funny cuz I think it was Katinar who was saying in one of her posts that you just kind of have to ignore the pain because you are in pain every day of your life. But then you have your days where the pain just seems unbearable. I know there’s a lot of people out there like myself who really don’t tell anyone they’re always in pain because either they won’t believe you/think you’re complaining/making it up or you’re just so used to it that you don’t wanna burden anyone else with your complaints. It definitely seems like the older I get the less I can ignore the pain that occurs on a daily basis :/
That’s my life.
I went to get recasted today for my braces and its always kinda fun when the doctor/medical professional has never heard of Arthrogryposis. They kind of have this funny look on their face like “What is it called?” This usually leads to me explaining to them like I would a child and then having to spell it out for them. It’s entertaining, well at least for me it is. Of course I was the first patient with AMC this guy had ever treated. He was nice though.
I love when hotels are helpful and nice. Usually when I call about accessible rooms the person is confused and doesn’t know the difference between an accessible room with a roll in shower and one without one. I called the hotel I booked for Comic Con next week to confirm my reservation and make sure they got my request for an accessible room. The girl said yes but intern asked what sort of accommodations I would need, I told her a room with a roll in shower and she informed me that they currently only had one and it was under construction but that she would let her manager know right away that the room needed to be finished by next week. Fearing it might not be done I was kinda bummed and scared that was the only accessible room they had. She then informed me worst case scenario if I couldn’t get the roll in shower room they would put me in another accessible room and provide me with a bath chair I could transfer to. I was surprised and appreciative of how helpful she was and wish more hotels were like that.
I hate being made a spectacle of. Earlier I went to a cafe with my sister and got in line to see what they had in the pastry section. One of the employees then came and pulled me over and said I didn’t have to wait in life. While that was nice of her since the place was crowded, I explained that I was not yet ready to pay because I wanted to see what they had. She kept trying to get me out of line. Anyways to make a super long story short, her and a few other employees spent 10 mins trying to get me to not wait in line while I was trying to explain to then that I would because I wanted to see what selections of pastries they had in the cases. Because there were a few employees involved it sort of caused a scene and people stared. I don’t like being the center of attention because of my disability. While I know they meant well I don’t like being treated special - like I’m some sort of fragile thing - while I’m out on public. I just wanted to see the desserts lol.
Bleh. Life’s funny. At least Comic Con is next week!
Can’t sleep so I might as well write since I’m up :/
Lately I haven’t been able too sleep comfortably in my bed. My hips have made it difficult to find a comfortable position to sleep.
My leg also hurts at the moment :/
My 4th was nice. Just stayed home with the fam and BBQed. Though I am bummed I wasn’t able to make it to the AMC Conference in Vegas :( I was soooo looking forward to it. I’ve never meant anyone (in real life) over the age of 3 who has Arthrogryposis as well. Anyways, I’m glad my chair is fixed because now I can sit comfortably in the living room and watch TV. Later I went outside to watch the fireworks but after 20 mins I got cold, and since I get sick easily I decided to sit in the car and finish watching.
My niece came over a few days this past week and she exhausted me! I love her so much though and I can’t believe she’s already 10. I’m just waiting for the day when she thinks I’m not cool anymore and doesn’t wanna hang out with me :( We drew, listened to music, watched movies and she pushed me around Target. One of my favorite things about her is even though she’s aware I’m different because of my disability and that I have special needs at times, she never let’s me show it or treats me any differently. She helps me clean my room, comb my hair, push me in my wheelchair, all without asking. Because she wants to. And she’s always trying to make me feel good whenever I complain or think negatively about myself. If I say something like “I’m fat” she’ll be like “You’re not fat! You’re tinier than your sister and you’re pretty.” Even though I don’t entirely believe it I appreciate greatly that she’s trying to cheer me up and her kindness comes from a place of sincerity. So yeah, she’s my favorite.
Starting to finally get tired. Better go.