zach:
Haven't talked to y'all in awhile. Still love you. Here it goes
Every day is mental health day, and I struggle with it. Lately it's been hard. More because of pressure than anything.
I've made huge strides this last year. DIL says I'm not allowing myself credit. Bought an RV campsite in a full timers campground, got a pretty new camper moved here and set up. For the first time in years I have decent housing, not someone's couch. First time ever since diagnosed.
The work and struggle of getting this place, building it up from raw land, it's worn me down.
I'm carrying a lot of unresolved emotional trauma about the way I lost my mother. That manifests as anger. It's an impotent rage. The angry me spends a lot of time alone. Built a really nice privacy fence around me to hide inside. My world in here. Fuck everything out there
Medically it's the same old marathon, still running. Joe's ghost calms me down in this area.
Near blind in one eye after cancer treatment last year. What started as (I was told) an aggressive skin cancer turned into 4 surgeries, 2 of them in my eye. 6 weeks of daily radiation, and reconstruction that left me looking like a horror movie for months.
Mylopathy just fucking sucks. Jolts leave me exhausted and short of breath. Spasms and tremors are daily. Most of the cannabis I use is self medicating these symptoms. Tired of that pain.
Hypotensive. Chronically. Low red counts across the board. Fainty and dimmed out most time.
MyChart locked me out in October. Meds weren't refilled in November, clinic didn't respond to messages and emails. I was stubborn and decided not to come down from the mountain. Lapsed for 14 days.
Remained UD. CD4 still low, in 12 years it's never been above 200. I gave up caring about that number. AIDS, advanced HIV, whatever politically correct term comes out next year. Just doesn't matter to me.
Finally got reconnected. HIV clinic patients can't get our meds by mail the way the hospital patients do. Pisses me off and makes me feel othered. Like we're second class patients.
I don't want more out of life. I just want what I have to go smoother. Wish the universe would go easy on me for awhile, let me live
House of cards, sword of Damocles. Doom. I can't shake that feeling. When I do, it simmers deep down, and that pressure builds. Those outbursts are the worst side of me. Spiral into self hatred when I get like that.
I have a support network. Sons are awesome, one of the daughter's in law works for a non profit as a case manager with refugees, she is invaluable to me.
A lady friend that refuses to let me give up. One day someone needs to do a documentary about the lesbians that helped us out since... the fucking dark ages 80s right?! Honestly, what gives there?
As much as I fight all of them for space, they surround me with love and won't leave me alone.
My dogs are great, and the little pleasure I totally enjoy in my life. Bijou is getting to be an old dog. She's with my oldest son and DIL in the city now. Living her best life in a condo sleeping on the couch barking at Jehovah's knock at the door. Waylon, the Belgian shepherd, is a rock I tie myself to some days. He's always by my side. Sleeps on my legs when I fall asleep at weird times and places, nobody bothers me then. We spend a lot of time in the national forest exploring abandoned logging roads.
So yeah, that's my update for y'all
I'm still breathing. Hope you are too.
Jim Allen:
Hi Zach.
Been a while since you last posted and I am sorry to hear things haven't been easy, didn't want your post to go unanswered and when I get a chance to sit down ill have another read it before replying again.
Best, Jim.
Jim Allen:
--- Quote ---MyChart locked me out in October. Meds weren't refilled in November, clinic didn't respond to messages and emails. I was stubborn and decided not to come down from the mountain. Lapsed for 14 days.
Remained UD. CD4 still low, in 12 years it's never been above 200. I gave up caring about that number. AIDS, advanced HIV, whatever politically correct term comes out next year. Just doesn't matter to me.
Finally got reconnected. HIV clinic patients can't get our meds by mail the way the hospital patients do. Pisses me off and makes me feel othered. Like we're second class patients. --- End quote ---
Glad to hear you got back onto treatment.
--- Quote ---AIDS, advanced HIV, whatever politically correct term comes out next year. Just doesn't matter to me. --- End quote ---
I'm normally happy with HIV and a touch of AIDS or a sprinkle of AIDS, then again, if someone is annoying me in public ill cough loudly and say; Don't worry it's just AIDS! Please do stand closer ;D
--- Quote ---I have a support network. Sons are awesome, one of the daughter's in law works for a non profit as a case manager with refugees, she is invaluable to me.
A lady friend that refuses to let me give up. One day someone needs to do a documentary about the lesbians that helped us out since... the fucking dark ages 80s right?! Honestly, what gives there?
As much as I fight all of them for space, they surround me with love and won't leave me alone.
--- End quote ---
Glad to hear you have a support network even if they do get on your nerves at times.
--- Quote ---We spend a lot of time in the national forest exploring abandoned logging roads.
--- End quote ---
Sounds fantastic.
Anyhow, sorry to hear about the struggles and if you ever need to chat let me know.
thunter34:
--- Quote from: zach on December 20, 2022, 03:57:34 pm ---Finally got reconnected. HIV clinic patients can't get our meds by mail the way the hospital patients do. Pisses me off and makes me feel othered. Like we're second class patients.
--- End quote ---
Are you referring to the IDP clinic? If so, you CAN get meds mailed to you. Mine just arrived by UPS today here in the hills. Of course, I told them I'd had a stroke and couldn't drive (true), but I'd improvise even if it wasn't just because fuck 'em.
They were mailing them, then stopped, then started again. The biggest pain in the ass is getting through to a human on the pharmacy line. I've waited for up to a half an hour.