POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: denb45 on October 03, 2010, 12:11:32 pm
-
1. It makes me vigilant
2. it keeps me aware
3. it makes me not want to give up
4. it makes me want to live
5. it keep me alive
6 it also makes me sad
7. it makes me cry on the days I don't feel so good
8. it makes me realize that I won't ever get better cause there is no cure
9. it makes me think of how I will die of this decease
10. it makes me feel isolated at times
11. it makes me depressed that I have it
12. it makes me understand my own morality
13. it makes me know that someday I'll be free of this awful decease
at the end of my life.........
14. it makes me feel guilty that after 23 yrs I'm still alive and struggling w/ this decease where others before me weren't so lucky
15. it gives me hope
I wish I can put more reasons , but right now I'm so choked up about all of what i just wrote I can no longer put it in to any words, I'm having a VERY BAD moment right now :'(
-
I feel your pain for sure. and I can relate to every point.
Sorry you are having a bad moment. We all have been there and your not alone.
Hang tough man. You are strong, you need to stay that way. (I know you will!)
Wish you all the best.
-
I'm having a hard time right now as well. It was September 1983 when I went to the doctor because of fatigue to be diagnosed with ARC. I've done really well but this latest regimen has fucked with my quality of life. I'm undetectable but my stomach is a mess. My underwear is disgusting and the last thing I feel is sexy. I want to stop taking my meds to see what happens to my blood work and my stomach. I'm thinking I need to go back to my old regimen and have a bit of a viral load and have a better quality of life.
I am grateful to still be kicking so I don't sound like a total bitch. I'm frustrated.
-
i've been feeling #6 - #14 myself this weekend.
hugs to you! :-*
Mikie
-
Just happy to still be alive.
-
Hey buddy,
I too relate to every point. We have been positive about the same amount of time so, I found after the first 20 years, things really started to change in my attitude and my life. The only thing that gets me through is taking each day one day at a time and knowing that there are always peaks and valleys. I too have been in a valley far too long, and am desperately trying to climb out of it.
Hang in there. At least we can all share with one another what we feel knowing the members reading understand and are here for support.
Take care,
JM
-
Thanks everyone, I'm just like everyone else, I have good days and bad ones, Today I was doing some fall shopping, and after about 2 hours on my feet I couldn't feel them anymore, then I got into my Truck to go
home I couldn't feel my hands ??? it's been a few yrs since I've had Peripheral Neuropathy , and THIS was another grim reminder of having AIDS , I keep getting a lot of those grim reminders, and it's quite depressing
-
Sorry Dennis about your bout with Peripheral Neuropathy. Wonder why it showed up now after a few years....hmmmm. As you say, if misery loves company, and to use your words "I keep getting a lot of those grim reminders, and it's quite depressing". Amen to that buddy.
For me I seem to be having more bad days than good the past year. Right now my doctor has me on meds for respiratory and sinus problems which are kicking my butt. Some of them with side effects I just have to tolerate until I'm through the course my doctors say. The benefit outweighs the risk. The rules are so different for us.
Just wanted you to know things have been tough for me to emotionally, physically, and all the rest. I too, I think am 23 years into this. Diagnosed in 1987 same as you I guess. And yes, I suffer terrible survivor's guilt, losing my two best friends within three months of each other in 1987, both in their late 20's, early 30's if that followed by countless others. Still think of them and miss them more and more each day. And I think too of the why am I still here, and then sometimes is it really worth it.
Wish I had more inspiring words for you buddy, but I just get how you are feeling. Sometimes getting validation for that helps.
Best to you and take care,
Jeff
-
Yeah Jim, Agreed, it's like I said before somewhere in these forums ( I forget where) Dying is easy, but living w/ HIV/AIDS is hard, and the older I get the harder it becomes ???
-
Hey Dennis,
I have at least 25 years with the bug, and quite a few things on your list really hit home.
You are sooooo right. The older we get, the harder it becomes.
HUGS,
Mark
-
Hey Dennis,
I have at least 25 years with the bug, and quite a few things on your list really hit home.
You are sooooo right. The older we get, the harder it becomes.
HUGS,
Mark
:-*
-
1. I think because of HIV I've allowed myself to become the man I always wanted to be and fuck whatever anyone thinks about it.
2. I hate it--it has stolen my dreams and my friends
3. It makes me angry and I respond poorly sometimes: my advocacy/activism becomes shrill
4. It has made me pay attention to the existential and learn about living in the moment
5. It is hard to meditate when you have the shits--but you learn to adjust ;-)
6. I've learned to love--and make love better.
7. I've used it as a source of motivation to chase my obsessions.
8. As a straight white male, it has given me just a small taste of what discrimination and prejudice can be like.
9. It has integrated itself into my very dark sense of humor. Who else can tell really BAD AIDS jokes, then a person living with it?
10. Its helped me not really give a fuck about a lot of things others might dwell on.
11. I'm at my best when I remember number 10.
-
Hey Marco Thanks man........
A strong person knows how to keep their life in order. Even
with tears in their eyes, they still manage to say "I'm ok"
with a smile ;)
-
Dennis
The first thing that came to my mind when I read the topic was: Counting the number of friends and aquaintences that have died makes me ill.
Everyone has been brave in the face of HIV.
Everyone deserves a big hug.
Joel
-
I was going to comment yesterday but I got very sad thinking about number 14. I lost so many young friends in the 80's and 90's and haven't really connected with new people because of it. I guess it's a bit of survivor's guilt. But I can look back now and realize how lucky I was to be a teenager in the 80's and have such a wonderful circle of gay friends in school. I have so many pictures of our many adventures that I can finally look at and smile instead of cry.
It also makes me grateful to know that we were all part of the generation that busted those doors down and weren't afraid to announce to the world who we were. We weren't the stereotypical group of sissies that would put up with others' bullshit. We were who we were and have made it so much easier for the next generations.
-
Hey Den ,
Yeah i could count the reasons , there are way too many !
It has taken my strength away !
It has ruined my dreams of a care free retirement .
It has taken my friends .
It has taken my freedom !
I have to worry when ever I travel !
I get tired so easy !
Numbness is just par for the course !
I am sick of people saying " If you can make it this far you got it made " WTF ?
Well this is just dragging me down the hole ..............
You all be well , Carl
P.S. Rather have a BUG than be ...................
-
Wether I like it or not being a LTS means everything to me.
This week I will off had 3 appointments,which means 3 recovery periods, the week defined in a very concrete way by HIV-LTS. And yes I am gratefull that I live in a country with a universal health system (UK)
I do on occasion imagine a life without HIV, its too overwhelming and for ME counter productive.
-
Amazement.
Fate handed me a sour, diseased group of lemons and somehow I have still managed to make sweet lemonade.
-
Amazement.
Fate handed me a sour, diseased group of lemons and somehow I have still managed to make sweet lemonade.
Yeah, Joe, we all have had to do this, at least some of us were able ;)
-
I'm hoping to keep this post alive. Each and every response amuses me.
Everyday it means something different to me.
Today, it mean feeling sassy and wanting to boogie and enjoy the strobes, but realizing I need to me mature and act my age.
Maybe?