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Main Forums => Pre-HAART Long-Term Survivors => Topic started by: MarkintheDark on October 22, 2018, 04:41:36 pm

Title: October Nightmare
Post by: MarkintheDark on October 22, 2018, 04:41:36 pm
Hi guys...idk if it's reasonable that I can keep this short, but venting helps here as it has with a couple friends.

I'm sole caregiver to an elderly mother who had an MI two months ago.  Help was limited post-discharge, but I managed to take full charge of her medical, including appointments, meds, etc.  However, what I know from my own history is that I can only do that a limited time until I'm affected.  NO ONE FUCKING BELIEVED ME.  After a few weeks I'd successfully delegated stuff to her church ladies, an eldercare agency, etc., while I wrapped up control of her DPOA stuff, concluding, in particular, I would NOT be her nurse, therapist, handyman, maid, etc.  Nevetheless, my proximity to her and her perpetual colds finally exacerbated my COPD 2 weeks ago, putting me in the ER first with Albuterol and 12 hours later I was intubated for 36 hours.

In my 63 years, this is the worst hell I've ever experienced.  If you've been intubated, you know they have to bring you back to remove it.  I could not communicate, could not breath, could not gesture.  Word fail to describe the horror and sheer panic I felt.  And, yeah, I find myself replaying the tube removal over and over.

I felt first hand exactly what I believe so many of my friends experienced 30 years ago.  I also felt the outrage that so many people believe AIDS is no longer a thing.  And that includes people with agencies who have apparently no concept.  I've lost about 20 lbs.  I don't recognize my body.  I'm in nearly constant pain, have trouble being mobile - though that's improving - and tire easily.  My arms are full of needle sticks.

I'm lucky to have a few around me who are willing to believe me that I AM SICK and I NEED HELP.  Many, if not most, others are in denial that there's anything serious going on.  On contacting my case manager, he cried to me about his mother and some dental procedure, even while I literally yelling at him I needed food assistance. The agency felt it was appropriate to send over a couple bags of food...one filled with large legumes - as though I was supposed to make a salad - and another full of donuts and cakes. Another staffer expected me to see their doc the next day...when I couldn't even fucking move.  And an agency pharmacist, while I'm desperately trying to arrange delivery of my meds, wanted to argue with me about what WASN'T available and why. 

Eventually, yes, I got help.  But I have had to scream, yell, and raise hell before anyone would listen.  It's like, to them AIDS does not exist any more.  As though we're all happy, perky seniors on single pill regimens.  As though my generation died thirty years ago.  No one ever goes to hospital.  No one today ever dies.

The hospital docs told me to rest for at least four weeks...and few with the agencies respect that unless I'm a complete asshole about it.  Imagine they'll be shocked that the steroids have tanked my numbers "when I was doing so well."  Whatta load of ignorant goddamned crap.

That's all I got right now.  I came home only seven days ago.  Got my ID doc tomorrow and I think I'm ok to drive a couple minutes.  But that's about it.  Hell, just doing a sitzbath to proactively curb the pain takes an hour.
Title: Re: October Nightmare
Post by: harleymc on October 22, 2018, 08:28:18 pm
Matey I'm sorry to hear you have been doing it rough.

Hope you recover soonish.  Hugs from downunder
Title: Re: October Nightmare
Post by: aztecan on November 13, 2018, 10:59:36 pm
Sorry you have gone through all this.
I agree, nobody wants to say the "A" word any more.
I hope you are on the mend.


Title: Re: October Nightmare
Post by: guitargal on November 19, 2018, 02:04:25 am
I am so sorry. There is such little help , for any elderly or disabled. Forget about AIDS. I feel the same way. I could hardly function. The ASO was of no help. I told the nurse practitioner how I felt that no one wants to say AIDS.  I am not just HIV +. Just because the blood tests look good, I feel really bad, extreme fatigue and pain where I can't eat let alone shop and cook. Wasting. I am not clinically depressed. I am depressed I can't do anything. Cant work. Social security.. A joke. Sold my stuff. Sleeping on my son's couch because I can't afford a place to live.
And their answer is antidepressant and therapy.
At the AHF clinic they have a video that shows happy people all over the world fighting hiv... Yeah, meanwhile us older survivors are isolated, alone , starving,  can't drive or keep a car maintained. and ASO's do nothing with the funding they get. If I get better I will help someone.