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Author Topic: Needing some support  (Read 2131 times)

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Offline konkrypton

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Needing some support
« on: September 11, 2012, 02:56:09 AM »
Hi all. My therapist cancelled my appointment for today, and I won't see her for 2 weeks. I'm down in the dumps and need to talk, but my best friend (who got married last year) is having his own issues. So here I am.

I was diagnosed in Oct. of 1987, so I'm coming up on my 25th year. At 51, this means that I've got 2 years to go before I'm officially poz longer than I was negative.

I'm in one of those weird head-spaces where I'm trying to figure out where I go from here. A little background:

My first partner, Bobby, was diagnosed before I was. I got tested soon after. We both had good jobs, he at a bank and me at a printing company. Despite our condition, or maybe because of it, we bought a house in 1989. Neither of us drank much, though we might go out to the bar to dance sometimes. Nor did we do drugs.

Around 1990 he came up with histoplasmosis. That meant infusions of amphotericin B AKA "ampho-terrible" AKA "shake n' bake." I'm sure some of you are familiar with it. It was called those nicknames because it caused the patient to shiver uncontrollably and develop a high fever. Nasty stuff.

I got him through that, and things went along ok for a while, until he got encephalopathy (infection in the brain). It was untreatable, basically, and so I tended him at night and a home health nurse came to take care of him during the day, so I could still work.

I lost him in 1991 after almost 10 years together. Heartbroken at the age of 30, I started going to a support group at the local MCC church. I met someone there (this was 2 yrs later) and began a relationship with him, not knowing that he was a coke addict. Well, coke or speed, either one. When I found out, instead of kicking him out, I dived head-first into a habit of my own.

Cut to: 4 years later. I met my second husband, Pete, at MCC. He was also an addict, and so we began to see each other more and more until we moved in together. I won't bore you with the details, but we got clean and sober for about 2 years, went through travel school, got on Crixivan, got off disability, and got jobs. We moved to Florida and lived happily ever after.

Mostly. Until we fell off the wagon because he worked with someone who was a heroin addict and could get coke. Pete lost his job (because they found out he was gay, but that's another story) and I urged him to go back on disability. Needless to say, we totally screwed up and I decided we needed to move back home (to Kansas City).

I lost Pete in 2008, after 12 years being "partners in crime." He'd had dental work done and finagled the dentist to get Oxycontin 15's. He was already taking 5's for his back, and he figured he needed something stronger. Also he hated dentistry.

Long story short (too late): He OD'd on Oxycontin and Lunesta. Last thing he said before going to bed that night was that he loved me and that I took good care of him. Next day I woke up, he's not breathing and he's not moving. Whole day is a blur.

In Dec. 2007 I fell on some ice and cracked my tailbone, then fell again in Oct. of 2009 and broke my back, requiring a spinal fusion and laminectomy. Also found out in 2007 that I had a stenosis (narrowing of the channel the spinal cord lives in) in my neck causing nerve pain in my left shoulder. My protease inhibitors have caused osteonecrosis (dying bone) in my hips so I had the right one replaced last year and will have the left one done before the end of the year. And to top it off, I've had 2 attacks of pancreatitis (horrible pain), got diagnosed as diabetic, and was told that I had some lesions in my butt (since removed).

I'm on disability. I want to work, I'm bored. But I found out the last time that I got off disability that getting back on when you need it is hard, so I'm scared to try.

I just started Egrifta, thinking if I could get rid of this damned "Crix belly" I might be attractive again, even at 51. I've grieved enough, I'm ready for life again. But what do I do now?

I've been sober since the day Pete died, can't drink because of the pancreatitis, and had to quit smoking before the doctor would do my hip surgery. I've given up all I have to give, I feel.

I saw someone's tag line that said, "Trolls and disability queens need not apply." It hurts that this is the way folks in my position are looked at by their peers.

Any ideas, constructive criticism or other input would help. I can't do this alone.
KK
--
I distrust morning people. I suspect they setup the rules of life while the rest of us slept.

Offline BT65

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Re: Needing some support
« Reply #1 on: September 11, 2012, 05:37:28 AM »
Wow K, what a story.  You've gone through hell, as have the majority of us lts'ers.  Which is why this forum is so important-we can relate to each other, have sincere empathy, and still encourage each other.

So, you're bored and wanting to know what to do?  When I got to that point in my life (after being on disability multiple years), I volunteered.  I mean, I work now, but before I got a job I volunteered for a local nonprofit organization.  I'm not suggesting you work, that was just my decision.  And it took me a while to find a job, since I had not worked since 1993.  It really did help to volunteer.  It got me out of the house, and I was volunteering for an agency that actually assists people in preventing their utilities from getting shut off, and also offers free budget counseling and job searches.  So I felt like I was doing something worthwhile.  And that helped my self esteem.

I'll stop, it looks like I'm writing a book.  That was just an idea, not saying that's what you have to do.  But volunteering worked for me, because not only was I helping people and getting out of the house, but I could set my own hours, since I was not on the payroll. It also helped me get out of my own head, by actually seeing people that have a very hard road in life, financial wise. Good luck with whatever you do, and remember we're here for support.

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Jeff G

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Re: Needing some support
« Reply #2 on: September 11, 2012, 08:24:04 AM »
Hi K . I'm really sorry you are going through this depression again . As a LTS I call what you are dealing with reinvention syndrome . I have had HIV since the 80's and remember thinking about 3 or four times in my life how many damn times do I have to start over again , how many do-overs does one guy get in life , so I named it reinvention syndrome and its not a comfortable condition to deal with .

I think Betty gave you some good advice , try to stay active and connected and it may help you through the rough bits . That tag line you mentioned that read  "Trolls and disability queens need not apply."  isn't meant to be hurtful , I think he put it there as a kind of fist in your face attitude for some folks that really feel that way about some of us that have been through hell and back and then get judged harshly for doing what we need to do to survive , I know he is disabled himself . I'm sending you some positive energy and wishing the best for you .   

Offline Solo_LTSurvivor

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Re: Needing some support
« Reply #3 on: September 11, 2012, 11:23:03 AM »

I saw someone's tag line that said, "Trolls and disability queens need not apply." It hurts that this is the way folks in my position are looked at by their peers.

Any ideas, constructive criticism or other input would help. I can't do this alone.

Wow K, that's quite the story you related in that you've had to endure your fair share.  Regarding that signature line, it wasn't meant to be hurtful at all.

If you read through this thread in its entirety, you'll understand exactly how it came to be used here, as that thread offers a bit of perspective.
don't equate intelligence with lack of masculinity
Jim Phelps, Mission Impossible
____________________________

Seroconverted: Early 80s
Tested & confirmed what I already knew: early 90s

Current regimen: Atripla. 
Last regimen:  Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky ::))
Past regimens
Fun stuff (in the past):  HAV/HBV, crypto, shingles, AIDS, PCP

Jan 2012: 818/21%
Apr 2012: 964/22%
Jul. 2012: 890/21%
Oct. 2012: 920/23%

Still UD after all these years

Offline wolfter

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Re: Needing some support
« Reply #4 on: September 12, 2012, 03:04:06 PM »
As a LTS I call what you are dealing with reinvention syndrome . I have had HIV since the 80's and remember thinking about 3 or four times in my life how many damn times do I have to start over again , how many do-overs does one guy get in life , so I named it reinvention syndrome and its not a comfortable condition to deal with .

 

Excellent!!!!!!   I'm gonna steal this one for my own.  Kinda ties in with waiting for the next crisis. 

And Kon, the worst part of my last recovery was the isolation and boredom which allowed my mind to constantly think.  I've always bordered on being hyperactive so I too have to keep myself busy or my mind becomes my worst enemy.  As others have said, volunteering became my savior when I was finally able to get out and about.  I slowly went back to work part time and am pretty much working full time plus.

Take care and best wishes
Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Theyer

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Re: Needing some support
« Reply #5 on: September 12, 2012, 03:58:08 PM »
Hello K,

Bloody therapists A ? , still there might be a few dependency issues for the next session. Jg has come up  with an excellent formation off a process a lot off us can relate to. Change is differcult, real change that is, not just having or doing something new , for me periods off being depressed seem to be part off the package off change, certainly periods off being unhappy, are . Our 21 century life equates depression and melancholy with failure which confuses things also.

Bt , path has worked for many . I seem to need a project, goal in the future and to be actively working on it for part off the week to keep the black dog from snapping at my heals.

From your potted history my money is on you however, it is not as if you are un aware off what trips you up, so keep on keeping on , all the best
mhtv
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline harleymc

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Re: Needing some support
« Reply #6 on: September 13, 2012, 12:53:27 AM »
Big hugs KK,

Sounds like you're a tough old survivor, you've certainly come through some horrible events.

Don't worry about labels like 'Disability Queen'... I get the impression that is aimed at the folks who milk the system. You are not milking the system, you have real health issues. Just don't let the health issues define you.

If going back to work has you worried, there are options like a spot of volunteering or maybe a bit of study or even just joining a social group.

Anyhow, it's good to have you here with the rest of us LTS... Hope to hear more from you.

HUGS

Offline deibster

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Re: Needing some support
« Reply #7 on: September 13, 2012, 01:36:43 AM »
Hang in there Konk,
I know I'm older than you, but there's another way to look at the situation. Plenty of people teach, or work for the government (bookkeeping or computer work), for 30 years & retire. The normal age to graduate college is 22. So starting about 50, bookkeepers or mechanics don't need a college degree, you can say you are retired, not on disability.

I have a pension & social securitiy disability. I say that I'm retired, and depending on how well I know the person, or want to know the person, I might add "due to health reasons." I know it's hard to walk with your hips, but get outside a little & get some fresh air. Maybe read to some senior citizens or pre-school kids who won't knock you over. Sending prayers your way. hugs, Deiby
Poz since Dec 1992. Meds since 1995. Disability since 2005.

Prezista/Norvir, Epzicom, Cytomel, Prevacid, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, doxazosin, Allegra180, Nasocort, Centrum, Flax Oil, Fish Oil

Offline red_Dragon888

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Re: Needing some support
« Reply #8 on: September 13, 2012, 08:23:15 PM »
I know in New York there is a program that helps people get back on the job market.  Is there anything like that there?  I am also in the same boat but I just came from surgery this week, had both hips replace, and I am recovering and hoping that I will be well enough to work again, otherwise I am in the system.  The fear is understandable and I am also looking to do volunteer work if possible that works with my abilities.  I wish you the best and hope you find the job that is great for you.
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

“Neither look forward where there is doubt nor backward where there is regret. Look inward and ask not if there is anything o

Offline konkrypton

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Re: Needing some support
« Reply #9 on: September 15, 2012, 01:48:57 AM »
Hi K . I'm really sorry you are going through this depression again . As a LTS I call what you are dealing with reinvention syndrome . I have had HIV since the 80's and remember thinking about 3 or four times in my life how many damn times do I have to start over again , how many do-overs does one guy get in life , so I named it reinvention syndrome and its not a comfortable condition to deal with .

I think Betty gave you some good advice , try to stay active and connected and it may help you through the rough bits . That tag line you mentioned that read  "Trolls and disability queens need not apply."  isn't meant to be hurtful , I think he put it there as a kind of fist in your face attitude for some folks that really feel that way about some of us that have been through hell and back and then get judged harshly for doing what we need to do to survive , I know he is disabled himself . I'm sending you some positive energy and wishing the best for you .   

Thanks to everyone for the support! What  jg1962 calls "reinvention syndrome" is what I have compared to the Highlander (TV show or movies). He's an immortal who continually reinvents himself because he can't stay in one place too long for fear that others will notice he doesn't age. Also he loses people that he cares about because they are mortal.

I've outlived both husbands and most of my friends, and because I have also had to reinvent myself, I've said to my therapist it's like being the Highlander. In fact, I kind of have an obsession with immortal characters like him, the vampires Angel and Spike, and there was the vampire in Forever Knight. There was also a short-lived show called "New Amsterdam" about a guy in New York who was immortal.

Anyway, I'm feeling much better today, and I want to express my thanks to the folks that replied, both here and in my PM box. I'm very appreciative, and will look into volunteer opportunities. I did that for a while after I lost my first partner.

KK
KK
--
I distrust morning people. I suspect they setup the rules of life while the rest of us slept.

Online LongTimeSurvivor

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Re: Needing some support
« Reply #10 on: October 06, 2012, 09:50:36 PM »
You might try joining a gym. Doesn't mean you have to heft 200lbs when there. You do what you can...don't judge progress by other guys physique. You'll progress at your own pace and being active has the nice side effect of helping improve your mood.

I go four to five times a week after work and on weekends. I don't have a big social life so to some extent that's my social life. If you go regularly you'll start meeting people. There are guys at my gym I talk with while doing my routines. Over time I've come to find out some have worse problems then I do (not necessarily AIDS/HIV related)...not that I have that many problems...especially compared to most LTSs on here.

Having a place to go regularly helps get you back in to a positive routine. Plus, while working out won't get rid of the "belly", exercising can camouflage it a bit. I have that problem but no one seems to see it but me. Lots of crunches over the years has helped.

Whatever you find that helps let us know. Always helps to have other options in our lives!
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