autism

I Won My SSDI Case!!!

| marandarussell

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Here is what I wrote on my Facebook page today, I think it pretty much sums it all up:

Six long years, and I finally won my SSDI case! Fully favorable! Feel like crying and screaming. Been sick and in pain so long, sometimes I wanted to give up hope and die, but glad I hung in there.

All those people who doubted me or thought I was just being “lazy” or “dramatic” can kiss my ass. To all those who have showed love, empathy, and encouragement, thank you so much for helping to keep me alive and fighting.

My fellow bloggers here on WordPress definitely fall into the second category of supportive, encouraging people, so thank you all so much!!!

By the way, the decision was just made yesterday and my lawyer was the one who called and told me, so it will still be a little while before I get the back pay or monthly payments started, but I’m on my way!

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At Least I Accomplished Something…

| marandarussell

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Been super unmotivated and blah today. I wanted to write a post but didn’t want anything that would take too much brain power lol, so decided to list the things I DID manage to get done today as a way to give myself a little pat on the back for even trying!

Stuff I Got Done Today:

  • Writing this post (still in process)
  • Put dishes up and cleaned kitchen (it desperately needed it)
  • Got my husband to change the trash
  • Listed several new artworks on my Ebay for sale
  • Called my mom back (had to leave a message, but that is actually preferred in the mood I’m in lol)
  • Had a tuna sandwich and the last Reese’s Pieces cookie for lunch
  • Gave all my kitties some love
  • Read a picture book about Mary Shelley (the creator of Frankenstein)
  • Showered and all that other hygienic stuff
  • Watched some Disney Channel
  • Watered my plants that are still alive after a week! World record for me probably!

I’m Livestreaming on YouTube

| marandarussell

I’ve started livestreaming on my YouTube channel just for something to do and another way to connect with people. I’m doing most of the streams on my personal channel, rather than my toys and books channel. My personal channel has a lot less subs (around 200 compared to over 3,000), so if you are a YouTube watcher, please consider subbing to my channel! Here are a couple recent livestreams if you are interested:

The YouTube playback for the livestreams is a bit blurrier than normal vids, but I’m working on that! You probably want to watch them in the highest quality available to minimize blurriness.

Afraid of Living

| marandarussell

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I am not afraid to die –
but I am not yet
unafraid of living.

I’m not sure I have ever written truer words than the 3-line poem above. This little gem came to me while taking a bath last night, so I repeated it to myself like a mantra until I got out of the tub and could write it down.

It is true that I am not afraid of death. I am a bit afraid of the actual feeling of dying, mostly because of the instinctual anxiety I fear it would bring. However, I am not afraid of being dead. In fact, I rather look forward to it. If there is something after death, it will be awesome to explore and find out what else is out there. If there is nothing after death, it will just be like the times I have passed out or been put out for surgery…simply a loss of consciousness which often sounds like a relief in itself. No more worrying. No more pain. No more anxiety or depression.

However, living is scary. Knowing I may have years and years of dealing with anxiety and depression ahead of me. Knowing that I will likely suffer from chronic pain and chronic illness until I die. Knowing that my degenerative conditions will likely worsen with time. Fearing that my husband may get sick or die and I will be alone. Fearing financial ruin. Fearing homelessness. Fearing potentially abusive situations. Fearing the entire planet going to shit (a justifiable fear from my point of view). Fearing that I may end up committing suicide if life becomes unbearable (not the ending I would desire for my life).

Dental Cleaning from Hell

| marandarussell

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That headline isn’t exaggerating. I had a horrible dental cleaning experience yesterday. Now to be fair, my teeth are extremely sensitive, just like everything else on my body (thanks autism), so cleanings are never fun for me anyhow. There are always at least a few painful nerves hit during the process.

However, yesterday the lady who regularly cleans my teeth was on maternity leave so I had a new lady who was incredibly slow, annoying, and seemed to manage to hit about every nerve on every tooth, at least on the front ones. I can’t recall the number of times I flinched from the pain. At least a couple times I teared up. I was starting to wish I was having a filling instead, because at least then I would be numbed up some.

I feel bad calling the lady annoying, but to be frankly honest, she was. She was one of those people who just talks and talks and talks, which drives me crazy. It was especially hard not to be annoyed when I was already having a bad experience. A few minutes into the cleaning I was tempted to get up and say “I’m sorry, but I just can’t do this today”, and reschedule for when my normal person gets back. I managed to tough it out though. Glad it is over and my regular cleaner should be back before my next cleaning!

Isolation and Loss from Chronic Illness

| marandarussell

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I’ve been feeling rather sad and isolated the last few days. I think a lot of it comes from the stress of dealing with chronic illness and chronic pain. Anyone who has chronic illness is probably familiar with spoon theory, an illustrative way to describe why you have to choose carefully how to use your energy to do things when you have very limited physical ability.

In other words, sometimes you have to choose whether you would like to go out and socialize for a short period of time, spend that energy getting some much-needed housework done, work on a hobby or personal interest, or even simply take a shower…because you just don’t have the energy and the physical ability to do them all within the same day like a healthy person could.

Most of the time I end up choosing to spend my “energy” and limited abilities to either spend time with my husband, work on my art/writing/blogging, or take care of personal hygiene or light housework. Prioritizing these things leaves no extra energy or time to socialize on a wider scale or do much outside of the house, other than maybe occasionally going out for dinner or doing a little necessary shopping. Even the thought of going to a movie is often too exhausting to contemplate.

All of this makes me sad, especially when I remember how I used to enjoy so many other things I can’t do any longer. I used to love hiking, playing tennis, roller skating, bowling, dancing, working, swimming, being a foster parent, and going out to various activities with people I know or share interests with. I’ve pretty much lost all of that for good. And that is depressing.