I cannot stand people who have that argument that technology is bad. That it’s making people dumber or more antisocial. I feel like disability always gets left out of that type of conversation, which isn’t fair.
When I say technology here, I’m talking about social media types. Like cellphones and laptops and even gaming consoles. Communication technology I guess?
Some common complaints I’ve heard are (but not limited to):
- No one calls anymore, all they do is text
- People always got their headphones in and aren’t listening to the world around them
- People who are always on their phone!
- Why do people need to take pictures of everything instead of just enjoying the moment?
I see technology as a means of enhancing disabled people’s lives. We can share support stories with someone half the world away who has the same rare disease we do. Those of us experiencing sensory overload can use our phones to block out harmful stimuli and play calming music. We can take photos and notes during doctors appointments, while walking down the street, or virtually anywhere when our shitty memory won’t let us remember anything later. Our hearing impaired friends can read a text instead of struggling to understand a conversation during a phone call. Those of us with visual impairment can point our phones at an object we can’t see; whether it be too far away, too dark or too bright, and zoom in to see the object! There’s even TONS of apps and programs that exist to help us.
It’s amazing!! It makes our lives so much easier! I know that I couldn’t function the way that I do without my phone. I am that person who takes photos and writes notes and prefers to read messages rather than struggle through the conversation.
So to the next old man to harass me for being on my phone can shove it! Don’t make fun of me for my accommodations. I need my phone to exist in this very ableist world.
I got invisalgn and everything hurts. Which I was expecting because I wore braces and retainers for years.
My Projected After:
It’s not all just cosmetic. I’m hoping a corrected bite will help with my TMJ/jaw pain and some of my neck pain? Who knows. I hope to be happier with straighter teeth! Although it makes me feel a little guilty because I wore braces for many years when I was in middle school.
A friend recently reccomended to me hemp oil for pain. Her suggestion was Charolette’s Web (https://www.cwhemp.com/) which I would LOVE to try. But my bank account disagrees until I know for sure it will work.
So I’m going to try a less expensive one for right now. I’ve decided to go with CBD Genesis (https://cbdvapejuice.net/cbd-drip/cbd-genesis-tincture/) in 550mg strength, although Koi CBD was a close second (https://koicbd.com/product/red-koi-cbd/).
Now I just need to find $60 + shipping somewhere in my budget to purchase it!
Lately I’ve been having that feeling.
The one where you just want to stop taking all your medications and just suffer.
To punish your own body for punishing you for so long.
Lately I’ve been giving that feeling serious thought. Because of side effects.
Side effects that my doctor has “never heard of before” and that “shouldn’t be happening because of this medication”. Nevertheless, I’m experiencing them. And every time I stop the medication, these side effects go away. It’s at the point where I would rather have high blood pressure than suffer through this side effect.
I do want to lessen the amount of medication I take daily. Although taking medication makes me feel like my conditions are more “real” and it’s not just all in my head as I’ve been told for years.
UGH I just have been horrible about updating this blog. I think I have mostly been using tumblr to post little complaining sentences lol.
Recently I have had a pulsed radiofrequency ablation procedure on my occipital nerves. I’m not sure if it has worked yet. It might have sent all my pain to the front of my head now? I know I have been using more Midrin than usual (probably because my sleep and work schedule has been very messed up lately though) which probably isn’t good. I’ve been getting more pain in the front of my head now, as opposed to the back/sides. I do know that I need to start physical therapy very soon because my neck and back are getting worse. I cannot put this off any longer.
It’s so hard for me to sit down and write something, but I am going to try my best to continue to do it. I always was a writer and I sort of miss it.
For the first time since forever, I didn’t make a New Years resolution. The past two years my resolutions have been somewhere along the lines of “be healthier” and “manage my illness more”, but this year I didn’t think it would be fair to hold myself accountable for such an impossible goal.
It is not my fault that I am sick. It is not my fault that it is getting worse. And it is definitely not my fault that no treatments are working.
This year my resolution is:
What does that mean? I’m probably not even 100% sure at this point. I am hoping that this is a resolution I can remember throughout the year and that it is something that’s meaning will change depending on how life goes this year.
Right now, to me it means to keep going; to not get discouraged and not give up in seeking an appropriate treatment for my pain. To keep working even though I may be sacrificing my health for it. Rest, but do not give up.
Here’s to another year of adventures!
I got my results through email today. And all I can say for now is
fuuuuuuuuccckk I really did not want heart problems. I am pissed and disappointed at my body. I don’t need this! ANY of this.
Ok, lets calm down… Look at the facts.
I’m sorry for the shitty quality of this, but JH puts their images in some BS Java application that won’t let me save to PDF. I’m going to try to print a copy at work later.
I was monitored for 21 days which came out to 491.28 hours.
Out of that time, my average heart rate was 98BPM. Tachycardia present for 40% of the time.
Am I dying?! Probably not. But I am WORRIED. What is the treatment for this?? Am I going to have trouble later on in life? Will I eventually die of this even if I am an old lady? I don’t know if I can wait until march for my follow up appointment.
I think I’ve worked myself up into a tachy episode reading these results lmao. Maybe I will try to stretch my back out and calm down.
Reminder to myself: It’s not the end of the world. You will survive this, just like everything else. Just BREATHE.
I have a problem. It’s with all these bullshit blog posts and articles out there offering the “cure” for migraines and other conditions, all you have to do is buy their ebook! For example, this one that was sent to me by a friend:
Why Keytones Kill Migraines
And I sighed, said to myself “not again” and started to read the article. I don’t even know why I wasted my time because I knew how this was going to end. I got into an argument with the friend who sent me this, and now I feel really bad. I feel guilty for expressing exactly how I felt. And maybe I was a little harsh and a bit too sarcastic, but I am tired.
I’m so tired of hearing all about diet & exercise & fucking yoga. I promise you, I’ve heard it all and I’ve tried it all. Tell me what a diet is going to do for my neurological disease? I KNOW there’s some science to it. I get it and I understand. And I get that they were just trying to help, I really do! But WHEN did I ask for help??
Damn near every single person who finds out about my disease tells me about how they think they know the cure. And how I need to try this one thing because their coworker’s brother’s son tried it and it worked for him. I know my body and I know my disease. And I promise you, some dipshit on the internet selling a “cure” for my incurable disease isn’t going to help me.
I am TIRED of being tired.
I feel just absolutely exhausted.
I am too tired to think beyond basic functioning. The other day I even took like a 3 hour nap when I got home from work. I guess it really doesn’t help that I’ve quit caffeine as well.
I am going to sleep. And sleep. And when I wake up I hope to be rested!
This morning I finally set up my heart monitor. I received it Saturday but I put it off until now. I was enjoying my last little bits of freedom I guess.
I’m stuck with this thing for 30 days. I am scared of these little sticky things getting caught on clothes or ruining my skin underneath it.
Related to this, I have a blood pressure medication now. Because I have high blood pressure. And probably have since last year around this time when I saw that really shitty cardiologist. Thanks for nothing, guy! My new one is here at Johns Hopkins this time. And believes me!
Hopefully these 30 days will pass by quickly and I won’t have too much trouble with this thing. And also that there’s nothing wrong with my heart! The other night I’ve decided I want to live long enough to go to space. I want to be a space grandma. So my heart better act right so I can make this dream come true.