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Everything posted by MarkintheDark

  1. I think you just summarized exactly the thoughts so many of us have had here. I wish I had some wisdom to help relieve your pain. Please keep sharing as you're able.
  2. In the past 24, just reading thru everyone's posts has helped me get outta myself a bit. But, heck, even reread this entire thread to give myself some perspective on the past six months. Surprised at what I've accomplished, but particularly overwhelmed by everyone's support. And, y'know, I just decided to let today be meh. Thurs and Fri were bad enough. Nor, unfortunately, is anything apparently happening with the photography this weekend...at least nothing that interests me. I'm not quite sure how to describe it, but I'm consciously trying to let go of a lot of stuff in my mind and stay in the present. Have had a couple interesting dreams, one again involving Dad, his last home and the ocean. That felt calming...when it seems like everything around me should be anything but.
  3. Even an ol' fart like me can remember at various times in his life going thru all the conflicting emotions you're having right now. I know how raw the pain can be. And that's even before the families' involvement. One thing I've noticed you've always done here is to jus' lay it all out. You honor us by trusting us with your guts...as conflicted as the feelings might be. You lay it all out anyway. Though you may not be feeling it right now, that says a lot about how much of a fighter you are. From this side of the screen, I see that as an admirable quality. Please keep posting.
  4. Many of us know EXACTLY what you're feeling, particularly that innate sense of an impending attack. I hope this one isn't a major one for you. Certainly I'd encourage you to jus' let it all out here (or elsewhere) by sharing what you can. Heck, even start your own thread. That kinda thing has helped me a lot...believe me, I've needed a lot of help this year. I have to add that losing four friends since Thanksgiving, particularly one of 50 years, is almost unimaginable. I'm 64 and have been through similar periods, but certainly nothing like the smackdown you've just experienced. If writing about them here or elsewhere is helpful, do it. Sometimes I have had to post here, trying to focus through tears...but at least not all of it was being bottled up. Let us know how we can help you.
  5. I'm like JD. My fallback position is any of the Star Trek series.
  6. After a crappy couple of days, all I needed was for the effin' broadband to take down my Netflix. Apparently haven't lost all my techie chops, even in my 60s. Did the usual backwards trace/resets from the TVs' wireless standalones to their transmitter then to the satellite box and eventually my router (that had knocked out both the ethernet and wifi). Everyone's is talking to each other nicely now.
  7. Bad couple of days. Took a lot for me to summon the strength Thursday to return the contact from the legal aid disability attorney. Though she's about my age and has dealt with those with HIV - initially encouraging signs - all she could offer was more of the same dead-end suggestions, albeit she seemed empathetic. On further reflection, however, it's obvious she doesn't get it. She doesn't understand that waiting "only another ten months" for Medicare to kick in is neither a note of encouragement or validation. Her, dare I say privileged, frame of reference is all but completely removed from my experience. I wonder how well she'd handle things if she were in my shoes. At least I was able to vent/vomit all this with someone privately here, if only to calm me down for the evening. However, today's call was to check on a couple of scripts and was told that the Ryan White program no longer covers one of my inhalers, even though I have a valid script. Well, at least I still have the emergency inhaler. But it's just another piece of support being pulled out from under me. Eventually - as it goes, probably even today - I'll calm down so I can get myself back to being at peace with the end of my journey.
  8. Hi Lundi. I'm an HIV/AIDS survivor of 27 years, so I guess I have a li'l experience with this. Since you're not sexually active, I'll limit the discussion a bit. Mostly importantly, I want to draw a distinction between HIV and AIDS. Simply, HIV is the virus than can lead to AIDS if left untreated. They're not interchangeable terms. To wit, my AIDS diagnosis wasn't until I'd already lived with the virus over eight years and got sick. In simplest terms, for a formal diagnosis, one's t-cells have dropped below a certain level AND there has to be the presence of opportunistic infection(s). Taking a bit of a detour, the way it stands today, if someone becomes infected and gets on treatment in relatively short order - even as simple as a daily pill - the level of virus in their blood will drop to a level, often within months, that they can't pass it on. (In the current vernacular U=U, undetectable=untransmittable.) As to risks for HIV infection, I'd suggest the Avert.org site for informed, reliable, detailed specifics. You mention concerns about saliva and tears. Regrettably, those are myths - along with sweat and urine - left over from the 80s-90s panic. (Even in the mid-90s, I had an angry dentist almost literally throw me out of his office, threatening me with arrest for trespass, prior to a ruling on the Americans With Disabilities Act making that kind of behavior illegal in 1998.) If I shook hands with you and happened to touch one of your sores, no, there's no risk. Period. There's not enough space for me to address every scenario, so I'd simply suggest you get on the site I mentioned. Considering your particular OCD - which I'm not qualified to address - I nevertheless recognize my words may be small comfort. What I would add is that SF, having been so seriously affected by HIV/AIDS in its history, has a plethora of resources, some even going back almost 40 years, if you just want to talk one-on-one with them about this issue or any other STIs.
  9. One of my rougher days on medical symptoms, particularly the hypotension...and the trots again. I suppose it makes no sense under the circumstances, but I often then feel compelled to get a few tasks done - today it was a few groceries - before the symptoms get worse, rather than rest. I have no one on who I can rely to do these things for me. That said, I'm not doing well this afternoon.
  10. Haven't really posted anything of significance since the weekend. Got out briefly on Saturday with a few friends for an extraordinary photo opp with Air Force One. Completely felt like myself. That is, I went off and found MY best location for well-lit shots AWAY from the herd that was trying to shoot into the sun. Continue to message the heavier stuff with a couple folks here on DF, particularly those who are honest enough to admit they don't have answers/solutions. That kind of honesty means more to me than words can express. In short, so far this month I've simply quit fighting and it feels peaceful for the most part. I've quit the fight with clinics and bureaucracies that want to control my life, that in their narrowly-defined terms think they're "helping" by stripping me of my dignity so I can survive. I know a few of us have been that route. As I've said before, their mindset is, "quality of life be damned." And, as I've also said, at 64 - still an almost incomprehensible age to me - I've somehow managed to overcome enough challenges in those years to then let myself succumb to a system that, by definition, isn't capable of giving a damn about personal dignity. Perhaps in fifty or a hundred years or so it will have changed. I'm simply living life a day/moment at a time. If that means no laundry today, fine. If it means catching an unexpected photo opp, fine. Maintaining my basic personal obligations is second nature. Feels nice to be able to do that. I suppose the short version is that I've been mostly ok lately with approaching the end of the journey. From my perspective, that's a significant change from the past few months. For the most part, I've just been able to let go of the battles. I may yet go back and forth a few times this month - no one said this would be a straight-line excursion - but I'm relatively peaceful.
  11. Had a little victory for those of you who recall my story about my airport lead throwing me under the bus in front of our group a couple years ago. I called him out, made a public stink, quit, and we hadn't crossed paths since. (Suppose it helped that a few of my friends in the months following weren't shy about sharing their opinion of him, some to his face, and his presence became scarce.) Our paths did finally cross yesterday at a sunset shoot. A couple other friends were around. We chatted and laughed while the narcissist just kinda stayed off to himself. Normally, he'd have been making himself the center of attention. I think I caught a glare from him, but I wasn't particularly paying attention.
  12. I think it bears mentioning how much I appreciate your absolute candor. For many others, it takes a while. If it means anything, that's a form of courage, as I see it. Maybe I'm being presumptuous, but I understand the kind of pain you must be dealing with. If I only had solutions...well, for that matter, for either of us.
  13. Sounds strange, but I'm thinking that I may have felt slightly, slightly, less tortured today. Landlord gave me until Dec. 31st. In normal thinking, I suppose that would be cause for celebration or whatever. To me it just feels like another delay on the inevitable. Oh, I thanked him, certainly. But, honestly, I'm feeling either numb to it or just dreading, as I have the past couple of months, the countdown to another deadline. Have still been fighting the anxiety symptoms all day. At the moment, I'm feeling as if they might be subsiding slightly. Another thing was that today I did NOT try any of the usual supposed anxiety-busting activities. None. Nada. Zip. Had a bowl of my Progresso instead.
  14. At the very least I can echo the welcome you've been given here. If nothing else - and I speak from experience - this is the place to vent, whatever is going on. tbh, I haven't answered sooner b/c I'm going through some sh*t of my own. I'm an HIV/AIDS survivor of 27 years who, since 2013, has been through several hospitalizations and has been an unwilling witness to the loss of many of my physical abilities in a manner that happen to be much the same as the ones you've described. I particularly related to the cold virus b/c someone's put me in the hospital last year (and under for 36 hours), plus two months' recovery. In particular, yeah, I know all about "invisible" illness and the ability we have to sometimes, how ever briefly, pull it together enough to act "normal." idk that I can put a judgment on it, good or bad, b/c it just seems wired into me...as much of a price as I may pay afterwards. And I sure do sometimes, most times. fwiw, I, too, am usually limited to 5 hours' sleep max. Can't even think in terms of 7-8 hours any more. Guess I'll mention, too, quite often I don't get the answers or help I need from the professionals. Though I'm by no means special, those of us who've survived with this for 25, 35, even 40 years are now older than many of those tasked with treating us. They often won't even acknowledge the PTSD some of us have from losing so many of our generation so young, won't acknowledge the long term damage done to our organs as we became guinea pigs for various treatments and that many of us struggle with treatment-resistant MDD. I can't even begin to comment on family b/c I have no familial support. Honestly, I'm pretty dam isolated. I so wish I had an answer for you that would take away your pain. There are probably folks here whose experiences better qualify them for that job. What I'd encourage you to do, however, is get on here and gripe as much and as often as you like, no matter what it is.
  15. Well, you got me curious, so I did some searches. It appears that in one Norwegian study, among others, low BP is associated with anxiety and depression. Gotta say, yeah, that surprised me.
  16. No two ways about it, the whole day's been torture, starting the moment I woke up with an anxiety attack in progress for which the Xanax only provided a few small moments of temporary relief. The hypotension has been cropping up all day with the eyesight and dizziness. (Nor, for that matter, ANY word from the people who were supposed to be helping me.) Nevertheless, I tried activity as one of my go-to solutions. Heck, emptied the trash, vac'd a little, paid a couple bills, even forced myself to get groceries. None of it worked. Hell, I really, really tried. Don't know what to do. Shut down? Have a cry?
  17. Y'know, I really, really tried to start my day, predawn, right today. Took my meds. Despite the (relative 52F/11C)) Florida cold, got outside for some dawn shots to relax me. Took a little time to process/edit them, too. Even a cup of coffee and ate a little bit. I guess I should take the recovery time from yesterday's injections into account, but idk that even giving myself that much of a break counts for squat. Yet I've still been fighting off anxiety and tears because I realize my situation continues to worsen and will only get worse...and I'm helpless to do a damn thing about it that would make any significant difference. I'm apparently a worthless POS to everyone IRL. No one cares enough to really, really help me. And I don't get it. I've fought to get help and just get beaten down further by people with their own agendas.
  18. Feeling uneasy and uncertain of myself. Have had a particularly bad 24-36 mental health hours, I think the worst I've had since my near-suicide attempt in 2002. Yeah, I've been that much of a mess and paralyzed. Much of it just came crashing in when I went to my NP for my monthly draw/injections this morning and I completely broke down. I'm lucky this NP has cared for me for eight years and knows me well. He made the deer in the headlights comparison. He gave a new med, Trentellix, a month's supply. It's a newer med for major depressive disorder and has no adverse interactions with my other meds. Eventually I crashed for six hours this afternoon. But I'm still exhausted an uneasy...plus, I'm dealing with my usual 24-48 hours of recovery from getting a month's worth of HIV medication in one sitting. I'm trying to take it easy, but it's not easy. But, at least I ate today. As badly as I still feel, I guess maybe it might be a little bit better than 24 hours ago. As I PM'd someone, these are truly baby steps for me right now.
  19. I'm sorry you find yourself in this pull/push situation. Though there are some differences in our experiences, I can understand the conflicting emotions. I think the first item that comes to mind is that your sister is present with the NM. The second is that you're doing what you need to do to take care of yourself, regardless of what family thinks. And, for that matter, it's sounded like their incapable of even being cognizant of what you've experienced. But NM is certainly not being left without any support...frankly, the kind of support YOU'VE needed yourself. You may have seen this coming, but I'll draw a parallel with my birthmother. She gradually laid more and more on me - handyman, therapist, nurse, legal and financial "fixer" - until it put ME in the hospital last year. Even then, neither she nor her "church ladies" could respect that I needed time to medically recover. They continued to press me to take care of things (essentially b/c, many times, they were simply incompetent). My one month recovery turned into two. Even when I was finally able to put her in assisted living, no one even offered to help me close out her apartment. Since then, I've had no contact with her...and that's for MY mental health, or what very little is left of it. I've made certain her basics are automatically set up to be addressed, even if I become incapacitated myself. But I refuse to put myself in a position where she might start to expect something like a weekly visit, cards, etc. I've likely been railed for ignoring her 90th, Thanksgiving, etc. You know from another thread that, hell, right now I can barely manage my own life. She's certainly receiving A LOT more support than I am...and I'll point out that's precisely b/c of MY efforts. Of course, the ever-critical, ignorant, shallow church ladies aren't pleased. But, honestly, I just reached the point where I'd done my "job" and didn't care any more. To be blunt, imo, it's ok just not to give a damn. You've been through enough.
  20. Monthly draw/injections this morning...and I couldn't hold back. Completely broke down in tears with my NP (who's, fortunately, known me for eight years). Even asked him how long he thought it would take me to die if I discontinued my treatments. Laid out to him how completely hopeless, overwhelmed - I've got no one to help me - and trapped I feel...and that I'm too much of an effin' coward to exit b/c there are no good options even for that. Told him I wished I could just simply not wake up, that I wanted to just finally give up on these 27 years and die, in fact that I'd prayed I could die because my life is collapsing around me. Even mentioned that my friend David had an exit kit (before he moved) and I wished that I had one. Hell, I need someone to take care of ME...and there's no one. He's trying to get me some help with housing paperwork, but I don't feel at all hopeful. Also, probably the worst thing I could have done, but emailed my current landlord that a couple units had fallen through and that last week, being Thanksgiving, essentially shut business down. He knows my health situation, but he's also anxious to get his renovations underway. God, why can't I just die have and end to this torture?
  21. Tried as I might, a tough 24. Intermittent naps and some crying jags. Oh, I forced myself outside and even ran into a friend on holiday from his job at Tel Aviv/Ben Gurion who I haven't seen in well over a year. But the roughest was that December 1st is World AIDS Day. That's to say, I've been visiting with the ghosts of the friends I've lost since the 80s. One of 'em I'd known since '86, who I may have mentioned here, passed last year at only 56. He'd been a competitive bodybuilder into the late 90s, but reduced to frailty, living in a wheelchair. There was my ex who passed in '02 at only 39, etc., etc., etc. You get the idea. Cannot understand why/how I've outlived them all. I sure as hell didn't want this job. I suppose it was an act of defiance that I broke FB netiquette and, instead of making the usual superficial nicey-nice on my page, I posted a bit about some of those folks and those who are somehow still living.
  22. If you're struggling and in pain, imo, there's nothing bs about it. I daresay most of us here have experienced exactly that.
  23. @Devlinkyla, thought you might be able to use a mention on how much I admire you for laying out your stuff for all of us with such honesty. I cannot begin to imagine being in your shoes. I know you've been in a lot of pain. About the best I can do is encourage you to continue at least posting what your thoughts are.
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