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Author Topic: How do I keep hope alive?  (Read 4347 times)

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Offline Rowdy

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How do I keep hope alive?
« on: June 20, 2006, 03:30:08 PM »
Your right Johnathon my struggles predate HIV. I could give you a list of things that I have had to deal with in my life, but it doesn't serve any purpose now. That was the past & it's gone. Nothing I can do about it now  but go on and live for today & hope tomorrow will be better. I have to make myself believe that.

Dan

Hi Folks/ Dan,
I'm new to the POZ Forums, but certainly not new to AIDS or some of the pain Dan and may others are going through.  I've been positive for nearly 15 years.  I'm 50 years old and have lost too many dear friends, a partner and 2 Old English Sheepdogs (Max & Daisy) along the way.  Sometimes life fucking sucks!  But I've had good times too.

I quoted Dan's last sentence because it resonated with me.  Most of my personal demons predate my HIV, but knowing that doesn't make it any easier to manage.  If you're already struggling with life's little speed bumps, how the hell do you handle the huge pothole that is AIDS. (My apologies for that horrible metaphor.)

I've been lucky to have had good medical coverage and good treatment and care, but my problem is with 'wanting' to survive.  What's at the other end of survival?  What does it mean to 'beat this disease?'  I've already lost all those precious members of my immediate and extended family, they won't come back.  What is there for me at the other end of this journey?

To paraphrase... "The past is gone; there is nothing I can do about it but live for today and hope tomorrow will be better..."  Better than what?  Better than when I was happy with my partner and our two puppies in our home in the country with a breathtaking view (cue the clouds breaking and the rainbow shining through.).  Better than that?

I had a pretty tough life as the last of 10 kids... not a lot of attention to go around by that point.  I have tried all my life to have hope, but someone or something always manages to pull that stupid rug right out from under my feet.  Oh, I've gotten right up and dusted myself off so many times I could puke.  I'm tired.  But I'm not totally defeated yet, I just need something or someone to poke me in the butt (Relax, not like that!).  I need some real definitions of what it means when someone says, we're gonna beat this disease.  What exactly does that mean?  If the world has not been able to effectively manage the spread or treat the infected in 25 years, what should make me believe that something 'right around the corner' will.  Twenty-five years, that's have my life.  Hope hurts sometimes.

I truly meant to try and stay optimistic here, but we are a product of our lives...

As I mentioned, I've been very lucky, I have great friends who care deeply about me and a terrific family who (now) loves and truly admires who and what I've become.  Many tell me that when they hear my story, I am an inspiration to them.  Well, that's all wonderful for them, but it makes me feel very lonesome and sad, because once again, I am providing for others and no one is providing for me.  Don't get me wrong, I'm very happy I can help people look inward and help them achieve things they only dreamed of doing, like riding their bicycle from San Francisco to Los Angeles, but where is my muse?  Where is my inspiration? Where is the person or persons who will affect me in a life altering way to make me look inward and want to "beat this disease?"

To quote another great man, how do I "keep hope alive"?

Please don't insult me and tell me to 'just do it' or 'ya gotta try, we love you.' Please, I've been around the block a few times... I've seen the dark side of life as well as the light.  But how, how do you hold on to that feeling of strength and energy to keep going, my grip grows weary.  My family and friends don't know what to say.  They try to look me in the eye and hold me and tell me they are there for me, but they don't know what to say or do... they're as lost or scared as I am.

...Rowdy!
I used to feel it, I don't feel it anymore.

Offline allopathicholistic

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Re: How do I keep hope alive?
« Reply #1 on: June 20, 2006, 03:58:33 PM »
But how, how do you hold on to that feeling of strength and energy to keep going, my grip grows weary. 

I can only speak for myself, so this isn't "groupspeak" but this is how *I* hold on to feelings of strength and energy to keep going. I think about the progress I've made thus far. I view the progress as blessings. I think about how those who suffered and died when AZT was the only ray of hope, or, worse, when science was stumped completely (no AZT).  Those folks have left this world, but their deaths helped pave a way to even stroger hope and possibly cure. As I sit here typing, I know I have life in me. They once had life in them. Now they don't. One day, I won't either. Same for you. Same for the gas station attendant, the Morgans down the block, cousin Jody and her fiancee Howie in Kansas, Elvis, JFK ....

Offline DanielMark

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Re: How do I keep hope alive?
« Reply #2 on: June 20, 2006, 04:32:20 PM »
How do I keep hope alive?

Good question, Rowdy. Wish I had an answer to that.

After 18 years living with HIV in me, I don't live my life in hopes of a cure (tho it would be incredible). Nor do I expect to be around if they ever find one.

I live in the hope that I will continue to grow as a person day by day – not harm anyone too badly before I leave this world – and that I leave something of value behind me when I go. Basically, I hope to love and be loved. I don’t know if I should expect more than that, but I don’t.

I try to keep my life and my expectations as basic and simple as possible. To do otherwise only frustrates disappointment in me.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Rowdy

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Re: How do I keep hope alive?
« Reply #3 on: June 20, 2006, 06:08:02 PM »
Thanks Daniel,
I'm really not all doom and gloom... it's just that I sometimes get very tired of all the HIV techno-crap and stuff to think about.  HAART, Viread, Reyataz, Valtrex, blah, blah, blah... How will that food affect my stomach?  What happens if I get the runs while in a business meeting... etc.

I'm actually quite happy most of the time and I have had some great times, but it get hard to hold on to those feelings.  I nearly died of PCP in 1996, I had 1 t-cell and my VL was over 500,000, I weighed around 114 lbs and looked awful, but then something happened and the right combination worked and I'm now at 165 lbs (okay a bit overweight for my 5' 7", but hey...), t-cell count is over 200; VL around 385 and generally, I feel okay.  I've ridden my bicycle from SF to LA 3 times in the AIDS/LifeCycle... but even so, even though I see the miracle in myself, I sometimes feel like I can't rally yet one more time.

It gets tiring to face this thing each and every day.  I need some propping up.  I need some reassuring that what I've done and what I'm doing is a good thing... that I'm a good guy.  But it needs to be genuine and sincere and from someone central in my life.

I used to feel that sense of "I'm going to overcome this," but have lost it and can't seem to get it back.

Thanks for your thoughts.
...Rowdy!
I used to feel it, I don't feel it anymore.

Offline Andy Velez

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Re: How do I keep hope alive?
« Reply #4 on: June 20, 2006, 06:17:17 PM »
Good to hear from you, Rowdy.

And all I can say at this moment is that even when you feel like crap and you think you can't stand another minute of the deluge, disappointments, dreariness, depression, darkness, dumbness and any other d stuff you can throw in, well just keep going anyway.

Because in spite of all of that an more there's something good about being alive. At least that's how I feel.

In dark moments you might try making up a list of 6 things you're grateful for. It really works, but I won't blame you if you feel like throwing a cyber pot at me over that suggestion.

Cheers?

Yes, cheers,

Andy Velez

Offline Eldon

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Re: How do I keep hope alive?
« Reply #5 on: June 20, 2006, 06:38:59 PM »
The HOPE in our lives depends on ourself and our view/or take on life. HOPE is every breath you take.


Offline jack

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Re: How do I keep hope alive?
« Reply #6 on: June 20, 2006, 06:56:16 PM »
I am 54 and have been on drugs since 89. I have many days like you are having now, and several long dark periods, but they always seem to end, and the sun shines again.
These meds do begin to control your life. I love trying to sneak 12 horse sized pills at a dinner with people who dont know. Business meeting are the worst,especially when trying to hold off a nuclear rancid reyataz fart,that would surely kill everyone in the room, while your stomach is making noises everyone can hear. I used to go to a small chapel to start each day, but had to stop cause of stomach noises and gas attacks.
Your two posts really hit home and to me were beautiful.
Knowing my luck, the day I die, they will find a cure for this shit, so they are gonna have to drag me out or find some new PIs that are worse than liquid norvir combined with sustiva and crixivan.

Offline tuggem

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Re: How do I keep hope alive?
« Reply #7 on: June 20, 2006, 07:06:51 PM »
My best advice to anyone when they find it all too much is to get a good night of sleep.  If you can do that, the next day, you might just wake up feeling better.  If not, get a good night's sleep the next day...

There is an illusion that we cultivate in our society that we are in control.  It is utterly laughable.  The only thing we can be certain of is what we are experiencing at this very moment.  If you feel sad, feel sad.  If you feel like dancing, dance. In the end, you will have lived your life.  It is never the quantity of life, but it is always the quality of life that matters.

In the meantime, be kind to yourself, to your body and to your mind.  Let go of drama and stress...they may be familiar, but they are not allies.  

When we seek the meaning of life, we often only seem to want to hear the type of thing that would be described as epiphany.  Life seems to me to be what you pour into and get out of it, plain and simple.  My therapist says we are often only as sick as our secrets...and I try to live that.  By being open with my HIV status, I let other's have and own their reactions and I don't have to worry about what they are thinking.  If you can live your life genuinely, all that energy spent hiding your issues will drop away and you can put it into more appealing things.  I take my pills at dinners without shame and look people in the eye while doing it.  After all, it is a disease we are dealing with...no shame required.


Ron
Lexiva, Videx EC

About 18 other meds to manage my side-effects/concomitant issues like diabetes, renal insufficiency, hypertension, hyperlipidemia, etc.

Poz since 08/25/1985 or earlier

Safe journeys!

Ce fut une belle aventure...

Offline jkinatl2

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Re: How do I keep hope alive?
« Reply #8 on: June 20, 2006, 07:35:55 PM »
Some times you  just. Go. On.

I can't explain it any better. You do something, sleep, kiss an animal, write a letter, make the hours churn from night until day into night again. You sleep, you bathe. You go on.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline AlanBama

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Re: How do I keep hope alive?
« Reply #9 on: June 20, 2006, 08:05:42 PM »
I take it one day at a time.  When I go to sleep, I know that I tried to do the best I could during that day.

Also, I'm trying to allow myself to 'feel' my emotions, to really experience them.  If I feel like I need to cry, I cry.   Then I usually feel better (not always but usually).

Some days I wonder why I have survived, when so many have not.   Am I stronger? smarter? I don't think so.   Some days, I don't feel like my life has much purpose.   Then something good will happen, or someone will say something really sweet to me, and it makes me appreciate the gift of life. Oh, and I'm still learning things every day.   I've just begun Ballroom II and then there's Ballroom III on the horizon......

Alan (who's finding it difficult to do the rhumba, 'cause he doesn't have a butt to wiggle.....) ;D
« Last Edit: June 20, 2006, 08:35:23 PM by AlanBama »
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Life

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Re: How do I keep hope alive?
« Reply #10 on: June 20, 2006, 08:34:27 PM »
I do it by "Faith."  Without it, life know matter how I look at it, seems shallow.  I shoulda died 4 times over prior to my HIV diagnosis. Every extra day after all that is fine with me...  I don't think I can cheat my way out of this one.  I hope I learn something new from this ride...  Don't know yet...
« Last Edit: June 20, 2006, 08:36:13 PM by Eric »

Offline Joe K

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Re: How do I keep hope alive?
« Reply #11 on: June 20, 2006, 08:48:18 PM »
Hey Rowdy,

Keeping hope alive can sometimes be a full time job, but what option do we really have.  Are you ready to cash in your chips?  Or would you rather try reaching for the brass ring just a few more times?  I can relate to and understand so much of what you say, but you seem to be a man who has stopped feeding his soul.  When I say soul, I mean your inner self, whatever you want to call it and it may or may not include religion, yoga, juggling or anything else that strikes your fancy.

A sad reality of life is that often it becomes exactly what we put into it, nothing more and nothing less.  I don't have any easy answers, I just know what works for me.  I've lived, loved and lost and the few times when it seemed just futile, something spurred me to again put one foot in front of another.  Personally, I think we all have the right to decide when we are done, but you don't seem to a man who is quite done yet.

So the question remains: "What do you want to do with the rest of your life?"  Maybe just try putting one foot in front of the other and see where it leads.

Offline Moffie65

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Re: How do I keep hope alive?
« Reply #12 on: June 21, 2006, 12:09:00 PM »
Hi Rowdy,

Reading this thread, it seems to me that you have left for a nice weekend in Reno, but forgot to fill the gas tank in the car.  Your spirit is the only thing that can give the word "hope" any meaning, outside the coldness of Webster.  Our spirit is what sustains our need to "BE", our drive to move forward, and our connection with all that is etherial.  Without a good feeding of the spirit, there is little reason for continuing the quest for "hope", or in fact, anything else on this road we call life.  I certainly can understand the rat-race you define so very carefully in your post.  Along with the many well meaning commentaries from those that love us and support us on this trip.  However, without YOU placing some energy into feeding the very spirit energy that will turn on that "light of hope", then there is little chance that you will find the answer to your quest. 

I cannot tell you how to do this quest, for each one of us must do it in our own way.   What I can do is tell you that from my experience; one must schedule "private" time, and make a promise to yourself that you are going to do some constructive work on keeping your spirit fed and invigorated.  I saw the special series on the ride from San Francisco to Los Angeles, and I was agog at the sheer strength of those like you, doing the trip.  I can only immagine that you are also immersed in your work, as so many are in San Francisco, and I suppose that you are quite busy in making the quality of life in "The City" one of joy for all.  Well, when was the last time you really "focused" on yourself and feeding your spirit???

I really mean this.  When Doctor Bob Frascino looked into my eyes in the Sunnyvale Clinic in 1983, and told me that I had ARC and that I should expect to live, and not die immediately, there was a certain horror that set in, one that I had to deal with and one that drove me to have a real heart to heart with myself.  Since that time, I have struggled, and I have overcome, but all these steps seem so temporal in nature, and in the end, only a continuation of the feeding of spirit has ever gained me any peace along the way. 

Please take the time to give Rowdy some "real quality" time.  I think it will help.

In Love and Support.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Christine

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Re: How do I keep hope alive?
« Reply #13 on: June 21, 2006, 01:30:58 PM »
Hi Rowdy,
I can tell you how I feel about it, conflicted. Some people may not understand or agree. My intent is not to scare or upset anyone, but this is how I feel. I never thought I would beat this disease. I accepted that at some point I would die of hiv. The dying part doesn't scare me, but the possible suffering until the end comes does. I am very saddened that I will miss, and hurt my family, friends, and experiences. I guess I am a fatelist, I think when your time is up- your time is up. I think our souls have a predetermined amount of time on Earth, and it can't be changed.

What I do think I have control over is how I spend my remaining time. I spend time doing things I love, surround myself with loved ones, play with my dogs, avoid drama, maintain a calm, healthy lifestyle. I think...I hope...that I have become a better person since all of this started. More patient, empathic, appreciate of the small things in the world. I guess my hope is that I live a good life regardless of how the end comes.

I think about other people. How do others live while suffering? Other hiv + people, Holocaust Survivors, POW's. How did they survive each day?

Finally, all that being said, part of me still hopes there will be a cure. I still fight each day to be here, take care of my health, try to help others, and in general hope I am living to the best of my abilities.

As a conflicted, hopeful fatelist, I take life day-to-day, and hope I make it to the next day.
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 water duck

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Re: How do I keep hope alive?
« Reply #14 on: June 21, 2006, 04:49:38 PM »
I kept coming back to this thread , always very lost for words, but in the hope that i will find inspiration to have dignity to hold my head high & shoulders straight.

Hope is like the Belgian Sun; it's always there, but as it's often covered by dark clouds or rain, it's easy to forget it's there. It's can really be a effort to make to remind oneself that it's there !!

Thank you Rowdy for starting this thread.

Siang

Offline jkinatl2

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Re: How do I keep hope alive?
« Reply #15 on: June 21, 2006, 05:37:51 PM »
one thing that keeps my hope alive is passion. Whether it's love, politics, even anger at wrongs visited to the noble, passion keeps my blood going, keeps me interested in the world (and maybe even interesting to it).

Find your passions. Embrace them. Express them. Be yourself without apology or hesitation. Make brilliant mistakes. Fall inappropriately in love. Make cusswords on an internet forum :P.

Thing is, be alive every moment you can muster.

I just had Froot Loops for lunch, with two glasses of Sake.

Now I am gonna take a nap.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Jeffreyj

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Re: How do I keep hope alive?
« Reply #16 on: June 22, 2006, 10:03:53 AM »
Perhaps you have forgotton that life is PRECIOUS. To beat this? Well to me it means waking up in the morning, kissing the ground, and thanking GOD for this wonderful day. I can see, smell, taste, feel, touch. Today is awesome!
Positive since 1985

Offline Rowdy

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Re: How do I keep hope alive?
« Reply #17 on: June 22, 2006, 01:43:15 PM »
You are all amazing creatures.  I just had a moment to read through the wonderful comments and actually felt they were not words but hugs and gentle hands on my heart and I shuddered.  I'm still feeling the energy as I type this... I've got goosebumps!!!   :o

I'm amazingly busy right now, but I promise I will take a "Rowdy-moment" during my lunch break to re-read feel all the love again and truly enjoy it.

I also promise to go to the beach this weekend and lay naked on the sand (I know a place!  :-[) and let the Earth hug me.  I need that.

Thank you all!
...Rowdy!
I used to feel it, I don't feel it anymore.

Offline Trish

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Re: How do I keep hope alive?
« Reply #18 on: June 22, 2006, 01:51:27 PM »
Hi Rowdy,

The only thing I can say that has kept my hope alive is the sheer will to live.  And to live each day as I see fit.  Make the best of each day and hope will shine through.

Hoping you find that hope inside of you...

Trish :)
"People grow through experience if they meet life honestly and courageously. This is how character is buit."  Eleanor Roosevelt

Offline water duck

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Re: How do I keep hope alive?
« Reply #19 on: June 22, 2006, 01:59:28 PM »
Yes Rowdy, very good idea. And if u can dive deep into the sea, let yourself be cleanse !!

Then u can lay in the sun & breath, when u breath, see this white light going in, bringing positive energies & HOPE, and when u breath out, look at all these black things that come out.

Have a wonderful WE  ;) ;)

Siang

Offline Rowdy

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Re: How do I keep hope alive?
« Reply #20 on: June 22, 2006, 04:39:33 PM »
Hi…
As I promised, I’m back.  I just went through the entire thread again and smiled, laughed and felt the love coming through… it’s been a while since I’ve felt that.

I sometimes do forget to think of Rowdy… I get so wrapped up in taking care of everything “out there” that I forget I need a hug too.  :(

Passion is a funny thing.

When I first came back from the brink of death in 1996-97, I made a conscious decision to LIVE!  In 1998 I went skydiving!  In 1999-2000 I took square dancing lessons and danced with some hot cowboys!   :P Yee-haa!  I went to Sydney, Australia for the Summer Olympics in 2000!  The following year (September 2001) I traveled to New York (...and picked up a cute guy on the subway and had wild sex with him!!!!!!!!!!!! :o :o :o)  The next day I flew to London and rode the Chunnel train to Paris (I whistled as I walked along the Seine …and I don’t whistle very well :-[), then flew to Rome and took the train to Florence and Milan!  In December of 2001 I went to the tip of Baja California and from my balcony watched the sun rise out of the fiery Sea of Cortez and set into the cool blue Pacific.  I bought a snazzy little red convertible sports car… 8) that took me to that “nekkid” beach a lot!  ;) I even drove it all the way from SF to LA on Highway 101 once wearing only my tennis shoes and a  ;D  !!!  I took voice acting lessons, which is a lot harder than I thought.

In 2002 over the New Year’s Eve holiday, I went on a retreat with 30 men.  We made life pledges and dressed up in funny costumes and danced around a spirit alter and took off all our clothes and rejoiced in our oneness and nekkidness!!! (Have you noticed there’s a lot of “nekkidness” in my life?!?!?) That New Year’s Eve I pledged to ride my bicycle 585 miles from San Francisco to Los Angeles the following June in the AIDS/LifeCycle and have done so 3 times.

Then somewhere during the third time riding, my energy seemed to be depleting.  Not my physical energy, but my desire to continue with the wonderful things I had been doing all these years.  Here I had turned away from self-fulfillment like trips and clothes and cars to doing something for others like riding my bike for a cause and I seemed to lose my spirit.  This puzzles me.  Shouldn’t I feel even more fulfilled?  I mean, I enjoy riding and being a part of the AIDS/LifeCycle world… it really is a cult… and yet I feel like I’m not getting the positive energy back from anyone.

Okay, here’s the kicker.  I met my boyfriend, funny how grown men at 50 years old talk about having “boyfriends” in August of 2004… he’s funny and smart and clever and I think I love him.  I say “think” because, there are other factors I truly need to take into consideration.  Have I latched onto him (and he onto me) because of fear of loneliness?  He’s great, honestly.  He signed up for the ALC with me the following year and rode with me from SF to LA in 2005.  We rode our bikes around Lake Tahoe last fall and around the Palm Springs dessert this past spring.  He fits right in my circle of friends and I into his… it’s a good match… except… he’s less than expressive with his love.  He doesn’t give me back the energy I so need and desire.  He’s not abusive, just one of those quiet types who often seems above it all.  I don’t understand this.  I’m very expressive and passionate about EVERYTHING!!!!  I’m loud and outspoken.  I’m not rude and tacky, but I laugh out loud and will say what most people are thinking but are too afraid to say.  He says he likes this about me, but sometimes is dismissive with me.

We don’t live together for other reasons… cats, leases, etc… but we spend lots of time together and we do everything together… ride, laundry, shop, movies, etc…

He positive too and now he may read this and know what’s going on in my head.  I’ve tried to tell him how I feel, but I always manage to just get angry or upset us both.  Maybe he gets it… maybe he doesn’t but I’ll never know, because he doesn’t open up to me.  He doesn’t tell me what’s on his mind.   :'(

It just seems like the relationship has changed me in ways that don’t necessarily make me happy and I’m afraid to acknowledge if it really is the relationship or something inside of me.  I used to feel alive… now I just feel like I’m here.  I used to feel it, I don’t feel it anymore.  I’d like to feel it again. :'(

I guess it’s time to go to the beach and get, you guessed it… nekkid! ;)

My apologies for the long post.
...Rowdy!
I used to feel it, I don't feel it anymore.

Offline water duck

  • Member
  • Posts: 397
Re: How do I keep hope alive?
« Reply #21 on: June 22, 2006, 05:43:45 PM »
Some are born listener not talker .

 


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