Hey loves,
Life has been kind of been one big mess after another. People who, under the guise of caring too much, putting their noses in things I would give anything for them just leave alone and stop “helping” because they’re just making it worse.
This week, I had a rather big blow to my self esteem when I was informed that my specialist doctor for my illness (I suffer from Ehlers-Danlos Syndrome), described me as being under “palliative care” for how painful and progressive my EDS has become. Hearing those two words as a descriptor for myself took some wind out of my sails, to say the least. I never really saw myself as *that* disabled. Maybe mildly so? I’m so focused on trying to be “normal” and hide my pain from others. It’s not that I’m embarrassed to have EDS, it’s more like if and when I show weakness, people think I’m complaining and overreacting to my pain. Like I *look* normal, so I can’t possibly have something like a bit of (more like a lot of) pain bothering me.
So many people in my past have tried to make it out like I have been lying about being sick, especially with something so serious and unpredictable as Vascular Ehlers-Danlos Syndrome. Trying to make me sound and feel like I was just crazy and question if it was all in my head. Some people insisting, in court, that I was just a drug addict. None of it was true, and it was ruining my life, so I just became background noise in the world. Or tried to. It’s why I slowed down posting here and everywhere else on their internet…
It’s not like it mattered much. I don’t have many friends. A lot of people hate me because if I talk about my illness, I’m apparently “complaining” and “miserable”. After a certain event in my life, I lost contact with a lot of people. People who only heard one side or a watered-down version of what happened to me. It’s not my job to convince people to pick sides, and I’ve since rose above talking about people negatively. I hoped being more positive would bring more peace into my life, but that part hasn’t turned around yet. Plus, I would rather be an advocate for healing than a victim of abuse. Help others stop the cycle. Not get stuck in it.
Anyhow, despite all the batshit crazy things going on in my life, being told that I’m in palliative care, and also now needing home health aides to help me live more normally, and coming to terms with how scary this all is right now, I am San Diego bound in a matter of days.
I’ll be at San Diego Comic Con for all the days and preview night. If anyone wants to say hello, get lunch or dinner (I don’t drink much, but I will join you while you have a beer and I have an iced tea or something), please let me know. I’m not planning on partying much. Just taking advantage of my hotel’s hot tub and pool. Probably the gym too to help my knee not dislocate.
The only party I plan to attend is the Disney (D23)/Marvel X-Men Hellfire Gala in a modded Captain Marvel Hellfire outfit I need to finish creating. I’m excited and honored to be going! Maybe I’ll get recruited to the newest X-Men team?
But really, I’m so excited to go to a red carpet event!
Let me know if you’ll be at the con. I’m going to be working and booth/panel hopping for my work, but I will be there and out and about.
Maybe you can help make me laugh and have a fun con after all the strange things that I’ve been experiencing? I could use a pick-me-up. Also despite the real day being over a month ago, it had been declared (not by me) that Comic Con is the official celebration of my birthday. I may be super old, but it’s been awhile since celebrating my actual birthday has been a thing. I’ve certainly avoided the bad luck day since before I came to SG.
Hope to see some of you all at the con! If not, I will be updating a ton!
x0x0,
☠️-Sid-☠️
