n00b here but not to frustration

[Guest guest]

*sigh* Yet another night. Ok, intro, ramble, rant, and a clinging to

those who know what I'm going through. Story? Quite a long ugly one.

Lemme just say this before I start...

Anyone who can't figure out how to unsubscribe to a Yahoo group hasn't

the intelligence to work a phone. Good luck contacting a lawyer who

won't giggle helplessly at you.

Ok then! My first brush with SSRI's. In the fall of 2004 I really

started to feel the weakness and fatigue that I'd had hints of that

summer. Bad enough to quit work and start seeking some serious help.

Tests negative. Well doc, still getting weaker here. Tests

negative. Um, still fading here, run everything you can think of!

Tests negative. Diagnosis: All in your head. Here, try these little

pills, they'll make you feel better. No informed consent at all and

well, all I can say is that by that time I was getting a wee bit far

gone. At this time I subscribe it a bit to having low testosterone.

A general malaise had gripped me but also a fair bit of desperation.

Still, nobody asked the big question of why the hell a 37 year old

male who'd never been sick in his life was sliding like this. By

winter I'd noticed a serious lack of libido and almost complete

inability to maintain an erection or reach orgasm. Testosterone

tests... Normal! All normal, sorry, all in your head. Here, have

some more pills. They'll make you feel better.

I actually don't remember too much of the beginning of 2005 which will

tell you my state at that time. Sum up? Well, in April 2005 I

collapsed on the doorway of the local hospital. Collapsed lung from

final stages of pneumonia, result of long term HIV infection (15 years

I figure). I was in a coma for about a month and a half. I figure my

weight was about 75 lbs when I woke up and I looked like I'd been

dragged out of Dachau. Beat 1 in 10 odds though! Send someone bigger

next time. Of course with news like that they figure you're going to

be depressed as hell so, again without any informed consent, I was put

back on those fun little pills. It's also very relevant to note that

the HAART therapy they put me on at this time included a drug cocktail

called " Combivir " , which had the fun side effects of making me

anorexic (at a time when I was desperately trying to rebuild my

tissues) and started destroying the sheathing on my nerves from the

toes up. Again, no informed consent on that, no notes as to possible

side-effects in my files.

I finally, after much prodding, got them to go over my drug schedule

pending my release and found out about what they'd been doing to me.

Refused to take a single pill until they'd reviewed my meds, switched

out the HIV component of it, and stripped things down to a minimum.

At no time do I think I was any less depressed because of the drugs,

they didn't seem to do anything for me (except for the negative

effects of course). It was only after I got out that I found out

about the adverse effects (re: libido) associated with SSRIs. I was

told of course, that this would fade over time as well as the

peripheral neuropathy caused by the HIV meds. The PN faded somewhat

but the other effects didn't. Now, after reading the posts here, I'm

wondering if the numbness and other effects aren't caused by lasting

side-effects of the SSRIs I was put on.

So what to think and what to do? As far as help on the medical front,

I've been treated most callously. So far nobody I've seen has treated

this seriously except for one doctor who I'll now, finally, be

transferring my primary care. In fact, I had one doctor ask if I had

a " partner " and when I said no, replied, " Well, what are you worried

about then? " I felt like castrating him and asking him how he felt

about it.

Oh those doctors! I was told when I got out of hospital that care had

been arranged for me. All under one roof they said. I soon found out

that they were only interested in the HIV infection side of my case,

and not even concerned about the PN that they had given me while under

their care. The message I got was " wait and see " , so I did. Besides

which, I had enough on my plate learning to walk again, and rebuilding

my muscle mass. Also, the PN had started to taper off and at this

time is down to a general burning sensation in my feet and lower

calves. At it's peak it stretched up to mid-thigh and was into both

of my hands and wrists. Naturally I assumed that my lack of ability

was related to this as PN manifests as a general numbness combined

with a heavy burning sensation.

Note: I'm more than wild on the outside but very private and shy in

my core. I found it very hard to mention these things to anyone.

Note: Why didn't I switch doctors? Seek more help? Well, the

fall/winter of 2005 I spent recovering and putting a bit of my life

back together again. I naturally enough felt giddy as hell after

beating such odds and surviving. Now I'm wondering if some of that,

which seemed unnaturally high, was from actually comming OFF the

drugs. Has anyone else felt this? I'd seen the HIV doctor twice in

that time and posted some impressive numbers as far as cell counts

were concerned, and the PN was fading as well. Then came the winter

(of my discontent). Circumstances forced me to move up north around

three hours drive from the nearest city. The local doctor? Well, he

was the one who made the comment about me not having a partner. So,

it's awful hard to doctor-shop when you're that far north (Canadian

prairies), don't have a car, and are trying to get by on disability

level cash. In the spring though my care was transfered at last to

this clinic in the city where I was assured that I would recive " all

under one roof " care.

*sigh* I'll have to break off with this story for now but I will send

this bit off tonight. Tonight? Yet another night of frustration.

Anyways, I'm glad to find a group that knows what I'm going through.

I've had to turn myself cold to deal with this, or is that another

side-effect? I want to feel again. I want to feel warmth, not the

keen edge of a razor as I see a couple embracing. One thing to keep

in mind, and always remember this. Get through it and you'll know how

strong you are. It's more than you think, more than you can imagine.

Meditate on these:

http://www.deviantart.com/deviation/43284819/

http://www.deviantart.com/deviation/43235018/

And one last just because it's damn beautiful.

http://www.deviantart.com/deviation/43500341/

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