Still trying to comply........

[BuggynDill]

New to the site and forum, so please, forgive any rambling for a minute..
I have been poz for 20 plus.  On and off of meds for the same # of years.  Started on AZT like the rest of us LTS.  It made me so so sick I quit taking it.  I lived for about 7 years no prob.  I partied and lived as if I had nothing wrong.  Then in about 97, I got pcp for the first time.........from there I began regular visits to HIV clinic in New Orleans and started a drug regimen.  After side effects and long waits in the clinic, sometimes all day, I stopped again with the meds.  Tired of the hassle.  Sick again, I began again meds and this time with antidepressants.  Long waits, side effects, and the hassle of case workers and disability, etc....got me to quit again.  All the while, mind you, I am an alcoholic and gambler living with an aclcoholic and gambler. Two dependent/enablers doing all the wrong things.  In 2006, I lost my partner in crime to this disease as well  complications of liver disease.  His death was rather swift and was very painful to watch.  I have such guilt over his passing to the point I, once again, have stopped with the meds again, then again and so on. I seem to be responding to the same treatments, but just when the #'s start looking right I go off again.  Seems like every time the pill boxes are empty I am too resistant to refilling them.  Dr.'s are tired of me.  I know they are.  I don't WANT to die but I can't seem to comply.  I live in a small town in SD and do not have access to qualified HIV/AIDS counseling. I wonder if there are any suggestions to help me want to or remember to do better and not smear the memory of those whom I have loved and cared for by not doing what I can for myself when they had no opprtunity or the mental capacity to do the same. For many,  the treatments weren't there in time.
I didn't want to ramble, but I sure hope someone may have a suggestion or two.
 

[Inchlingblue]

Are your difficulties only with adherence or also with access to the medications?

You have to want to "do better," as you put it, for yourself not because you don't want to smear the memory of others.

There are underlying issues of addiction and guilt here which you seem to be aware of. It sounds like you know you could benefit from some counseling but it's not available where you live? There must be a good therapist you can seek out, the person doesn't necessarily have to have lots of HIV experience in order to be able to help you.

Hang in there. Hugs.

[bear60]

Hi
I love your screen name. 
Please know that many of us are in the same boat as you...we have lost loved ones and life partners and have trouble getting thorough the day sometimes.  Feelings of guilt for being here....survivors guilt...plague us all the time.
The support here is wonderful, but its probably necessary to get into a support group.  I think my support group really did save my life.  If you live in an isolated area I know its harder to find services.
It really is important to take care of yourself.  It makes each day go easier.

Best of luck

Joel

[Andy Velez]

Hey Buggy,

It's good that you have spoken up about where you're at. That's a good step towards dealing with problems better.

This may sound harsh and maybe it IS harsh, but no one whom you have lost is going to come back and say, "Yes, I would feel better if you stop taking your meds and make up for my death by neglecting yourself." Quite the contrary. Anyone who cared for you wants to see you well and having your life. That's my guess or my bet.

Now I know you say your doctors are tired of you. But I am wondering if you have spoken with any of them and told them what you are struggling with. I am wondering if somewhere among those whom you go to for your healthcare there just might be someone who can point you towards some help. To a support group or some counseling. Give it some thought. Help can sometimes show up in the most surprising places.

Keep talking to us.

Cheers to you, bud. 

[BT65]

Bug, welcome.  I'm a fellow LTS'er, and also a recovering addict.  I can say honestly, that every time I relapsed, until I got done using, got clean, and started the recovery process again, I didn't deal with the HIV.  I don't know where you're at, because you mentioned being an alcoholic, and maybe you're doing fine with that. 

You've got to want to live; obviously there's some reason it doesn't seem that important to you.  Please try to get into a good therapist, and figure out why that is.

Betty

[BuggynDill]

T's to all who responded.  I appreciate the time you took and the advice.  I am actively searching for a good therapist, and refilled the pill cases again yesterday.  I am a recovering alcoholic so am currently striving to maintain in that area as well.  I guess that at times I just feel overwhelmed.  I try not to bellyache about it cause I know MANY are worse off than I am.  Though only Medicare, I am grateful to at least have some type of insurance. Elsewise, I would have really given up long ago.  Yesterday I spent the day at the doctor and had many tests ran, chest x-ray, ( clear of pcp, tG ! ) and so on........
Today has been a better day ! I look forward to a good day tomorrow as well....

[BT65]

Bug, outside of what federal employees have, Medicare, IMO, is the best kind of insurance to have.  It's accepted everywhere.  Yes, I have Medicare myself.   About the alcoholism, do you go to meetings? Do you have a sponsor, and work the steps?  I'm not trying to get a nagging nelly, but I know myself I do better when I do all the upkeep that comes with recovery, rather than trying to get away with just a little bit. 

You may want to ask your doctor for a referral to a good therapist.  Do you have an ASO close by?  They would be able to help you also.  Just keep going, one foot at a time.  For me at least, life is a bit about what happens to me, and a lot how I react to it. 

[Theyer]

  [For me at least, life is a bit about what happens to me, and a lot how I react to it.] 
[/quote]
Bang on BT
Welcome,Bug.
Glad to hear you are getting back on track, keep on posting.
Theyer

[blackwingbear]

New to the site and forum, so please, forgive any rambling for a minute..

Anytime you need someone to rant at that WILL listen and has been some of those same places... 

[BuggynDill]

Thank's for that.  I so appreciate the responses and the advices. 

[kelly42]

 ::)i can relate! i have been positive since 1991 and i too have been a bad patient you know on and off. that is a serious game you are playing because there is a chance you can become resistant to your meds. what are you going to do when there are no meds not to take?