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Author Topic: Ok - So Now What? Good Greif !  (Read 7945 times)

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Offline Life

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Ok - So Now What? Good Greif !
« on: June 11, 2006, 01:42:38 pm »
Ok, its been ten months.  I have been doing everything I have been told to do.  I have been a good little boy.  I have been 100% ad herant.  My numbers seem to be going the right direction and all that.  Me and William just got back from a blast furnace in Kansas and celebrated my parents 50th which was really nice.  I introduced William to the entire bible belted world.   I have never heard William talk and talk and talk as much as he did with all my relatives.   The day we were to return to Aspen, a dear colleague of mine died while driving Independence Pass when her car went off the road and fell.  I gave a very powerful eulogy that moved many many people about her.  I try and be helpful to others and know that today is all I have.....   But....

I realize, knowledge about my hiv is great to know about and learn about.  To be helpful to others is great.  But I have also found that I would like to now "compartmentalize my HIV so it quits interfering with me and Williams life.  I cant seem to break free.  I have tried to be less on the internet and just let Dr. Ben do his thing with me.   But I always have in the back of my mind...

When will this come to play..

Vireo-logic failure..
Resistance..
PN
you name it..

Why is it, William does not even think about being HIV (not on meds yet).  He is well aware of his status, but it just does not bother him.  The only time he remembers he is HIV is when I bring it up to him (almost every conversation).  We love eachother and will be together till its all said and done.  I just want what he has, but I don't seem to be wired like him.   No electrician is going to help me get over the fact that I need to go about life as normal.  To live in the day.   Yes I have heard all of this for 20 years, but can't seem to get it to stay put.   

I presume, I am on a path that many others have walked before me.  Would you ever so mind in reaching back with your hand and pulling me up to the next ledge?

Love
« Last Edit: June 11, 2006, 02:31:48 pm by Eric »

Offline heartforyou

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  • I must be a survivor in many ways...
Re: Ok - So Now What?!?
« Reply #1 on: June 11, 2006, 02:29:59 pm »
Dearest Eric,

I really liked your open-soul story. A very sad story as you tell of your colleague.
The story I can very well relate to.

I can speak form experience Eric.

My lover, who was neg, died of a heart attack at the sweet age of 32.
It was then that I realised we all have to go.
So, you and I will go with HIV. That is the difference.

The day will come that HIV wil become less important to you.
Yes, you will have moments of despair, but don't we all, HIV pos or neg have them in our lives?
So many people have back-aches, or intestinal problems.
My sister has chronic fatigue syndrome, not a joke I assure you.


But the basic questions of why we are here and were we go remain the same.

Getting older will make you wiser. I know.

If I can reach my hand to guide you a bit on this path, take it. Together it is a bit easier.

With friendship,

Herman
Infected 1983. Diagnosed in 1987 and still kicking
Dovato once daily. Hydrea

Happiness is the freedom of breathing fresh air every day.

Offline sfnoepaul

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Re: Ok - So Now What?!?
« Reply #2 on: June 11, 2006, 02:50:37 pm »
As someone on Meds since 1988 I can try to give you my perspective.

I have an engineering background, so my way of dealing with hiv has been to learn all I can about it, meds, etc. This can become obsessive waiting for the next blood test result, etc.  I know you've heard it before, but the best way to stop obsessing about HIV is to keep busy. Exercise more, get a dog or cat or other pet that will engage or distract you. I find pc games like the Myst series have been helpful when I find myself unable to think about anything but HIV.

I've had to change meds several times, once due to virologic failure, and the other times due to side effects.  My anxiety spikes up during these episodes, but the good news is that there are now so many medication options that if you have to change meds you will be able to switch to another combo that will work.  Each time I need to convince myself again that things will be ok.

I've been living with HIV for 25+ years and my doctor says I'll have a normal lifespan, and you need to believe that you will too.

Love and Peace

Offline Life

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Re: Ok - So Now What? Good Greif !
« Reply #3 on: June 11, 2006, 06:44:49 pm »
Herman & Paul,  Thanks...   

You know, generally I am very optomistic and I get that from my doctor and people I choose to listen to here on the boards.   I wish I could just have "it" (hope) injected into one arm, while they are removing the blood from the other.  I appreciate both of you who have gone ahead a bit and come back to offer and share your experience.   I am fevorishly trying to outclimb this!

Love

Offline Blixer

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Re: Ok - So Now What? Good Greif !
« Reply #4 on: June 11, 2006, 11:33:49 pm »
As someone only 5 months into this and already on meds I can identify with what you are asking Eric.  I look at Jan 9 as the day my life changed, or my perspective on my life changed.  I realize I don't think about it as often as I did. I know that the anxiety isn't as great as it was before.  But it is always there, always in the back of my mind.  And the same things you mentioned.  As you know I"ve had some major issues getting on the meds.  It has really cause me to begin to question my belief in my doctor.  I know that one of my meds is known for the PM and I often wonder if some of what I'm experencing is related to that.  I guess the most frustrating thing for me is that despite all that is known, I haven't been able to get many answers.  I've felt a bit isolated and kind of like I've been on my own.  I've tried to find out all I can about this disease and the meds.  I've leaned on many people here for support. So maybe what you are experiencing and what I"m experiencing is just normal for those of us that are new.  And Will hasn't had to face the meds yet.  His body had taken care of things in a different manner.  And hopefully he won't have to face that for a long time.  But for those of us who are there, swallowing those pills every day, trusting our continued health to them and the doctors, we have a very different set of circumstance.  Maybe it isnt' that we are wired differently, maybe we just have a different set of inputs right now.  Take care my friend.  If you get it figured out, be sure and let me know. 
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline Markmt

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Re: Ok - So Now What? Good Greif !
« Reply #5 on: June 12, 2006, 07:08:08 am »
Hi Eric, sorry to read of the passaway of your ex collauge. On the other front it must have been such a terrific experience having the family reunioun + having William in your midst.

Life is Ups and downs. When I was doing my anxiety therapy our (as a group) key word used to be 'acceptance and calm'. That is accepting the low moments and being assured that they where only a passing phase. Somehow this seemed to help getting rid of the mood faster.(the tought process is a bit complex) When one stresses out over an anxious moment it seems to generate more negative thoughts and makes the downs linger on and on. You have to know that this is a passing phase. If it wasnt HIV there will be something very suitable we can blame on getting us down. You will be out of it ;)

take care,

mark
"Live to love and love to live."

Leo Buscaglia

Offline allopathicholistic

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Re: Ok - So Now What? Good Greif !
« Reply #6 on: June 12, 2006, 08:49:10 am »
Why is it, William does not even think about being HIV (not on meds yet).  He is well aware of his status, but it just does not bother him.  The only time he remembers he is HIV is when I bring it up to him (almost every conversation).  We love eachother and will be together till its all said and done.  I just want what he has, but I don't seem to be wired like him.   No electrician is going to help me get over the fact that I need to go about life as normal.  To live in the day.   

Sounds like a nice balance exists for the two of you! You're already on the next ledge it seems meaning  a caring loving cautious person is showing love and concern for someone's who a bit more happy-go-lucky ... Now IMHO you don't need to bring up HIV every single day although it clearly indicates your love for William. I say cherish the personality balance, grow from it, and know that your relationship dynamics are the way they are by design, not by accident. If I were you I'd ease up on hiv talk but that's just me

Offline Christine

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Re: Ok - So Now What? Good Greif !
« Reply #7 on: June 12, 2006, 12:06:13 pm »
Hi Eric,
My advice is to just take baby steps, one day at a time, and keep walking down the path of life. Remember that every single person on the planet has something that they worry about. We have hiv on our shoulders, others have personal problems, or financial problems.

We can't choose or will away our hiv, but you can choose how you accept it. Acknowledge that some days it will be overwhelming, and other days you won't think about it at all. Choose to live life to the fullest, each day, because no one knows what tomorrow will bring.

We all worry about the hiv, but god forbid, one could walk outside and get hit by a car crossing the street. Ask yourself, if you passed tomorrow, would your life be what you wanted it to be? Or is it a life filled with fret, worry, and fear? If it is the latter, then make a choice to stop worrying about it.

Another thought..(this is a little bit of psycho-babble)...Do you think you keep thinking about it to punish yourself? That because you have hiv you don't deserve to be more care free. I know I have put limits on myself in the past, and sometimes I think it is because I don't feel worthy of happiness or joy because of the hiv.

Ahhh...it can be so complicated...
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline Life

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Re: Ok - So Now What? Good Greif !
« Reply #8 on: June 12, 2006, 05:21:03 pm »
I appreciate everyone's perspectives on this...  The only way I can grow is put things out there and see if I stand on common ground.   Christine,  I will try and stay on the right page.   I think I could be punishing myself for this.  But not so much anymore.  Both me and William have been in the midst of loved ones getting very sick and dying (not of hiv) and we have been there for all of it.  You compound this with HIV, it becomes very "close to home."

Mark - its funny you said Acceptance.   I keep for getting that "acceptance is the key".   I had an early mantra 10 months ago from my sponsor "Patience, Acceptance, leads to - Serenity."  Guess I need to brush that off again.

Allopathicholistic - Thanks, HIV occupies way to much "brain time" - I will work harder and maybe in a few more months of letting things go, it will improve..

Thanks David - You are such a support for me in all the phone calls.   You have helped me out of the pit many many times..

Love
« Last Edit: June 12, 2006, 05:23:11 pm by Eric »

Offline DanielMark

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Re: Ok - So Now What? Good Greif !
« Reply #9 on: June 13, 2006, 02:58:26 am »
It's difficult for me to clearly recall my first year to give you much feedback, since I've been living with this over 18 years now. Reading through this thread Eric, one thing I am thinking is that 10 months isn't a long time to get adjusted to being HIV+ and maybe you are not quite settled with that in your own mind yet.

Do you have a therapist? Maybe you are not done working through grieving the loss of you old life yet. Until that happens, it's hard to reach the point of acceptance.

Just my two cents.

(((hug)))

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline kcmetroman

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Re: Ok - So Now What? Good Greif !
« Reply #10 on: June 13, 2006, 08:24:57 am »
Hi Eric,

As usual, some good advice here.  I think it is important to separate your grieving from your HIV.  Take the time to recover from the loss of your friend, then you can deal with the virus.  It becomes terribly painful when the two are mixed....

Be well my friend

Offline david25luvit

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  • Member since March 2005
Re: Ok - So Now What? Good Greif !
« Reply #11 on: June 13, 2006, 01:47:08 pm »
Eric...Hey buddy.  Dwelling on your hiv status is normal perhaps but not required.  William sounds like he's accepted
his situation...and of course not being on med's makes it easier to "forget" at times.  Find ways to take your mind of
your little bug....Make taking med's a game is one suggestion.  But regardless whether your HIV or not...dwelling on
anything negative brings nothing but negative results.  Remember to be grateful for what
you have and for the time you have with him.  Sometimes you don't realize what you have until you lose it.

Give William a Big Ole Hug :-*
« Last Edit: June 13, 2006, 01:49:03 pm by david25luvit »
In Memory of
Raymond David McRae III
Nov. 25, 1972- Oct. 15, 2004
I miss him terribly..........

Offline Iggy

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Re: Ok - So Now What? Good Greif !
« Reply #12 on: June 13, 2006, 07:47:47 pm »
.
« Last Edit: January 12, 2007, 09:40:41 pm by Iggy »

Offline Life

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Re: Ok - So Now What? Good Greif !
« Reply #13 on: June 13, 2006, 08:50:33 pm »
I just love you guys!  Thank you...   

I print these out for William to read as well and he always reminds me of "Do you remember what so and so said to you on AIDSMEDS"?  Its pretty werid having your words, your ideas, come out of Will's mouth.  I am getting support from every angel...  Oops  "angle"...

I feel Loved.... :)

 


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