Author Topic: 18 1/2 yrs POZ and a Caregiver (rather long post) (Read 7183 times)

RevMC · « **on:** September 11, 2006, 10:38:55 pm »

Hello everyone. A few years ago I was in POZ magazine under the title "A Sale Of A Lifetime". We sold everything so that we can afford meds for my other half.

I've been poz now for 18 1/2 hrs, no need for meds at the moment. Though my counts are not great, they have been stable and around the same for many years. 250 t-cells 19% 3500 virul. Doc agrees since I've had no problems, not even the flu so saving the meds if stability goes crazy.

My lover has also been poz for 18 yrs, we've been together for almost 10 years. He has full blown AIDS and was diagnosed with KS in February this year. He tried chemotherapy, it's on his legs. Treatment was one treatment every 3 weeks for 18 weeks. KS started going away and was looking great, about 1 month after stopping chemo it looked like the KS was coming back. It's been about 3 months and it has spread all over his legs VERY quickly. He just started chemo again, t-cells are 130 virul is undetectable and 28%. He's been very sick and is afraid he won't be around long. The last Chemo did a job on him.

I've learned to keep a positive attitude after all these years, it hasn't been easy to say the least. After 18 1/2 years I've watched a lot of people die in my life. My mom passed away 5 years ago as well. If and when my lover passes away I'll be alone. My brother and father and I are not close at all. My brother is trying but after so many years I'm not sure how close we'll be. My dad disowned me years after he found out I was gay. I know what a dad huh. My mom and dad had been divorced for many years.

I live in Land O Lakes (Pasco County) Florida and there is nothing in the way of a support group anywhere real close to where I live. The closest would be about an hour away. I work part time and am on disability and am now pretty much a full-time caregiver. He can take care of himself when I'm gone for 5 hours 3 days a week for the most part. When I'm home, I do pretty much everything. And for intemacy, it's been 3 1/2 yrs, that's how long he's been sick. I'm afraid to go and cheat on him because I don't want to hurt his feelings and I'm afraid at times that he may get hurt if I'm not around. When I'm at work 3 days a week we have neighbors around he can call on in an emergency.

He has a hard time getting by and getting in and out of the trailer we are now living in. What a major way to cut down on expenses just to live, going from an 1100 sq ft home to an 8 X 27 ft. travel trailer. He has to take it one step at a time to get in and out of the trailer and has fallen a few times.

I'm sorry for venting so much on here but I'm in need to talk to someone who'll listen. Is there an area other than the forums on the site for caregivers who are poz like myself to be able to talk and get some support? Is there a column for some advice and guidance that I can read regularly? Anything would be better what I have for support, information, guidance and a boost of confidence every once in awhile.

TY everyone who has read this. May what ever god you believe in shine his love down on you and help you on this journey.

Michael

AlanBama · « **Reply #1 on:** September 11, 2006, 10:44:27 pm »

Hello Michael.

Glad to welcome another long term survivor to AIDSmeds! We have a great support network here, we are all here for each other. I'm glad to have you join us, just jump in when you feel like it!

I don't have any suggestions for you, as a caregiver, for a place to come for support, but I can say that I think you'll find lots of support right here. Some others may have an idea or two for you....

Hugs,

Alan
Poz since 1987

Teresa · « **Reply #2 on:** September 11, 2006, 10:49:15 pm »

Hi Michael,

Welcome to the forums! Glad you found us.

My name is Teresa and we found out May 5, 2006 that hubby was HIV+ so we are still kinda new to all this.

Feel free to vent anytime you need too. We are all here for you.

Hugs
Teresa

Eldon · « **Reply #3 on:** September 11, 2006, 10:53:39 pm »

Hello Michael, it is Eldon.

First of all I wish to extend to you a warm WELCOME to the forums. Here you will find encouragement, communication, understanding, support, some laughs, some cries, and many of your questions answered relating to HIV/AIDS. I too was in search for a support group. I live in Highlands County and the nearest is in Polk County (about (1) one hour away) to go to a support group. This is a great site with an astounding membership and a lot of information on HIV/AIDS.

I am sorry to hear that your better half is going through what he is going through right now. The BEST thing that you can do is to continue to give him the love and support that you have been giving him for the past (10) ten years or so.

Here you can feel free to come and vent out what is going on inside of you. We are all in this together, individuals will listen and individuals will answer as well. Hang in there and continue to do your BEST that you have been doing thus far. You are not alone.

Again, Welcome! and Have the BEST Day!

Matty the Damned · « **Reply #4 on:** September 11, 2006, 11:09:59 pm »

Welcome Michael! I'm glad you found us.

Fondly,

MtD
(Who worships the Invisible Pink Unicorn - Bless Her Holy Hooves)

J.R.E. · « **Reply #5 on:** September 11, 2006, 11:16:05 pm »

Hello Michael,

My name is Ray. I live over here in Pinellas county,Fl, in the Palm Harbor area. I have been HIV positive since 1985, been with my partner now for 26 years. He is HIV negative. I've been on meds on close to three years.

I am sorry to hear the difficult time your partner is going through right now. The main thing is that you are there for each other.And that is the thing, to be there for each other. And you are right, it is a very tough journey. I have never had KS, so I have never been through chemo therapy, I do understand how physically and emotionally draining this is.Perhaps this next round of chemo, will help in getting rid of your partners KS. I have also lost many friends throughout these past 21 years. I also lost my mother in 2002, and my sister earlier this year.And a very close friend of ours. It has been a difficult, emotional year. I sometines wonder myself, how I keep my strength up at times.

I just want to welcome you here, I think you will find plenty of support from everyone. I am wishing you and your partner the very best. Stay in touch with us !!

(((((HUGS)))))))-------Ray

RevMC · « **Reply #6 on:** September 11, 2006, 11:31:53 pm »

WOW, I'm so glad to have such a warm welcome

I'm on an emotional rollercoaster and reading your replies to my post has brought some tears to my eyes I am so overwhelmed. I'm also able to breath a bit easier knowing that I have a place I can come to and call my home away from home.

TY everyone for some very quick replies to my post. TY POZ for a great service you are doing for all of us

I'm looking forward to chatting with more people on here and helping out when I can in one way or another.

Love and Light to everyone.

Rev. Michael

p.s. I am an ordained non-denominational minister by the way.

IzPoz · « **Reply #7 on:** September 11, 2006, 11:59:18 pm »

Michael,

Welcome to the forums. I am IzPoz, and live in FTL Florida. I was primary caregiver to my husband, especially in his final years. He never had KS, but he did go through kidney failure and the dialisys.

Being primary caregiver for your loved one can be both emotionally and physically draining. You do your best to keep his spirits up and keep him focused on getting better. Though, I know at times, you feel in your heart you don't want him to suffer. What I always did was just be as normal as possible for my husband and did what I could. I tried not to make him feel bad if he didn't do something right, or if he was being too demanding in one day.

It sounds to me like you are on the right track with your loved one. Just encourage him to get his rest, and suggest that he try not to be a super hero and do things that are not in his ball park. Assure him that he still has his pride, just gently remind him his body needs to rest.

If your neighbors are home during the times you are out, ask that they stop in and check on your partner occasionally. You will at least have that comfort of knowing someone is there to check on him.

And I COMPLETELY understand about the intimacy issue... it was a number of years that we even ATTEMPTED anything physical, then he was diagnosed with congestive heart failure, so that threw a wrench into that as well. I loved my husband very much, and was very dedicated to the vows we exchanged back in 93. It wasn't easy getting through all that, and having hormones kick in full force.

If there is anything I can answer for you, or if you just need an ear, feel free to send me a pm. I will do my best

Remember: Life is about change. It's never constant. And you do your best to take things one day at a time. Enjoy today and look forward to tomorrow.

ndrew · « **Reply #8 on:** September 12, 2006, 12:14:29 am »

Greetings Michael,

This is like a busy hive of love and support. You need never be alone. I am happy you are here. Bless you for your goodness to your partner...

Vent! Share! Question! Love! Welcome!

In Kindness,
Andew

LatinAlexander · « **Reply #9 on:** September 12, 2006, 12:15:53 am »

WELCOME HERE MAN!!!

We are not perfect..But guess what? WE ARE IN THIS SHIT TOGETHER!!!!!..And that shit better gets ready for some REALLY TOUGH OPPONENTS!!!!!!!!

God is sooo wonderful. He put this place on my way. I know it. It has been the place where I have cried , just like you. I was diagnosed just 2 months ago, and It has been a rollecoaster for me. I am already on medicines.

YOU FOUND THE PLACE YOU WERE LOOKING FOR!!! WELCOME TO OUR FAMILY!!!!

Alex

Matty the Damned · « **Reply #10 on:** September 12, 2006, 01:44:59 am »

We are not perfect.

Speak for yourself Alex.

MtD
(Who is worshipped in several small developing nations)

bear60 · « **Reply #11 on:** September 12, 2006, 12:40:04 pm »

Hi Welcome....
I am a caregiver and a longtime survivor so I know how important it is to have an outlet just for YOUR needs and emotions.

poobear · « **Reply #12 on:** September 12, 2006, 01:37:38 pm »

Wlcome Michael.
It sounds like your going thru alot along with your partner right now. I am so sorry for that. But I do believe you have come to the right place. Although I have no experience with being a caretaker, I have been HIV+ for 12 years. I wish you and your partner the best. Great Big Hug to you from Rachel.

Lis · « **Reply #13 on:** September 12, 2006, 01:50:38 pm »

Welcome,

Its been a long road for you... you are an inspiration!!! hang in there and vent away!!! Ive been poz since 1986. and am now in the AIDS stage.. i have a couple kids and a husband (all neg) so i totally get the care giver part .. always putting other peoples needs ahead of your own can be hard sometimes... but it is worth every minute!! hang in there and post often!!

lisbeth

kentb · « **Reply #14 on:** September 12, 2006, 03:08:04 pm »

Dear Michael,
what a breath of fresh air! You are to be commended, taking care of your partner is undoubtedly no easy task. I am positive and my partner is negative and I know what it is like to have someone to depend on. I hope there is some hope that your partner will improve. I will keep you in my thoughts and prayers and I hope you stay well!
compassionately,

Kent

frenchpat · « **Reply #15 on:** September 12, 2006, 03:30:39 pm »

Bonjour Michael,

I am in awe for the love and strength you have had all over the years. Your story touches me deeply. I am not far from the begining of this new journey and what you describe I find both scary and inspiring. Very mixed emotions. I don't know how I can help, but want to tell you that you and your loved one are very welcome here.

Pat

RevMC · « **Reply #16 on:** September 12, 2006, 10:03:21 pm »

I'm glad to see a few other people from Florida on here. A few of you are very close as well.

To some of you who are newly diagnosed as HIV+, keep a positive attitude that you will be able to keep going and be around for as long or longer than us long term survivors.

If we can do it, so can you. Just never and I mean never, give up hope.

Again, everyone, thank you for the warm welcome. You'll see quite a bit of me, once I start posting and replying at times, I can and will be quite active on here.

Love and Light,
Rev. Michael

p.s. Louie started his Chemo treatments again yesterday. Even the doctor was surprised how fast the KS has spread on his legs since his last visit about 1 month ago. Doc said it's even worse than before Louie started treatment the last time. I'll keep everyone posted.

Matty the Damned · « **Reply #17 on:** September 12, 2006, 10:33:35 pm »

Send our best wishes to Louie, Rev.

MtD

wellington · « **Reply #18 on:** September 13, 2006, 01:05:23 am »

Sending all my excess good karma your way, guys, hoping that KS will take a hike!

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Author Topic: 18 1/2 yrs POZ and a Caregiver (rather long post) (Read 7183 times)