I Won My SSDI Case!!!

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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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“I Matter” ACEO Artwork

I was feeling really depressed when I made this mixed media ACEO artist trading card. I originally wrote “I don’t matter” because that was how I was feeling, but after finishing the abstract artwork, I decided I didn’t want to leave such a negative message permanently. So, I took out my black pen, marked out the “don’t”, and underlined the words “I matter”. Just doing that small thing made me feel a bit better and like maybe I do matter more than I give myself credit for…

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See my art for sale on my Ebay store!

I’m Livestreaming on YouTube

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.

Bad TV Show Depiction of Ehlers Danlos

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I love the tv show House. This medical drama, based around the character of a doctor with Sherlock Holmes mystery solving abilities is often smart, informational, and amusingly ridiculous. The main character (House) is often a total asshole, but he is so lovably grumpy, enormously flawed, and irresistibly outrageous that I can’t help but like him.

Last night I finally caught their episode that features an Ehlers Danlos patient, an episode I had been looking forward to seeing for a while. Unfortunately, I was really disappointed with the portrayal. First off, very little of the episode actually had anything to do with the woman with Ehlers Danlos. It focused more upon her husband for the first half at least.

When she was finally introduced into the storyline, she was presented as someone with a horrible mental illness (hoarding), which a casual viewer could easily think was due to her forthcoming Ehlers Danlos diagnosis. The last thing those of us with EDS need is to be confused with mental illness conditions even more.

Also, the only symptoms that are even discussed to be related to EDS in the show (and thus lead to the official diagnosis) are the fact that the woman’s heart responded badly to some medication and she had suffered several miscarriages. That was it. Yes, EDS can contribute to miscarriages, but it is far from one of the hallmark symptoms of many EDS sufferers. Nothing was mentioned about hypermobility, chronic pain, dislocations, joint issues, gastrointestinal issues, autoimmune issues, bruising/scarring, loose skin, etc.

Overall, a very disappointing experience as a viewer and EDS patient.

Afraid of Living

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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).