Getting Through

[Jnm594]

After lurking around for awhile I finally reached the point to put my feelings out there.

I'm just so damn tired and lonely all the time I don't know what else to do. I was diagnosed after getting pneumonia at Christmas and had a cd4 of 15 and a vl in the millions. I was able to get in a study that I am so grateful for because after five months I had 115 cd4 cells and my vl was undetectable. I just had my latest blood work last week and am waiting for the results which my gut tells me will be ok but I think that its starting to hit that my life has changed forever.

I feel so tired and alone. I live in the rural mountains of Colorado and am an hour from just about everything. Don't think Aspen or Vail, Think more Northern Exposure. So I don't have the energy to stay in town late because if I don't get my 8-9 hours of sleep I feel like the walking dead, so my social life is limited. But I think that's what I have consciously/subconsciously chosen. If I'm alone then I don't have to deal with other people. It seems sometimes like all I do is get up and go to work and come home. But I do attend a great church and they have been very supportive and I volunteer at the local ASO every week just to have some contact with other people. But then I shut down. I have always been very gregarious and that's just not me anymore. I have a job and insurance but even with that I'm broke and in debt from hospital bills and make just enough money to not be able to apply for any relief. I take these fucking pills that make me fart gas that peels the paint off the walls and explosive diarrhea that blows the enamel off the toilet and give me a rash from the top of my back to my butt. But hey I'm alive! At least that's what I tell myself.

I guess I expected a different quality of life and that was my own naivete. I just didn't think that my life would turn out this way. But then who of us did? I have prayed to God, asked questions of God , Yelled at him once or twice ;-) ok maybe more than twice....And I finally let the tears come last week. And boy did they come....I'm talking sobbing with snot coming out your nose crying, and I did feel sooooo much better after that. I've always been the "strong" one, Always been there to help someone and offer my shirt off my back if they needed it (get your mind out of the gutter!) but it is so hard for me to ask for or accept help. I just think "Pull yourself up by the bootstraps" but fuck it I'm getting some fabulous glittery slip ons instead.

I just cannot do this alone and I accept that. I'm single, and now I see all my dreams of actually having someone to love me go down the tubes. Last year I was 38 and on top of the world (and a few guys too) and now I'm 39, going to be forty next month, broke, tired, and put up wet as we say on the ranch. I just don't know what to do! I know that those feelings are not reality and I need to move on but it's been safe up til now in my little shell. But now is the time to take those first tentative steps to living not just surviving.

And yes I have to be honest that I have thought about "checking out" of this current life I'm living, but to hell with that. I've never backed down from a fight in my life and I'm not backing down from this one. And deep down I know that it will get better, it has too. Plus who could take care of my animal family like me, I would miss them too much to do anything like that, they are always there loving me even when I don't feel like I deserve it. And when you get right down to it I guess I'm too much in love with myself to do it. My right hand has been too good a friend to me lately to hurt him.

When I finally went to the emergency room in December (My mother had flown out to take care of me and she dragged me, literally, to the hospital) they told me that I probably wouldn't make it through the weekend. Merry Fucking Christmas. But I'm still here just don't have the energy to kick much. My doctor says that my onryness was a big help (for those of you that didn't grow up in the south that is defined as a mean little shit). She has been a godsend to me. All of the people who have helped me in this journey have. But this journey ain't over yet...

My testosterone if good, my blood levels are good, my diet has it's ups and downs but it ten times better than before, I take my meds, get my sleep. yadda, yadda. Just have this black cloud puring down on me and I'm tired of getting wet. I just want to be able to feel the rain instead.

I have been attending a support group in Denver about every month when I can get there and I asked my doctor to recommend a psychologist and I'm seeing him in two weeks and my expectation is that will help. Oohhh these damn expectations. They just keep popping up. If I need to take another pill what the hell, I'm just willing to do whatever I have to do to get through this current black hole.

I finally realized that they probably weren't going to come and get me in the middle of the night and take me to some quarantine zone. This is still the United States of America, at least I think so most of the time.

I guess that it is time to deal with the emotional side of this disease now that the physical is more manageable. But this disease is one mean mother, meaner than even the biggest redneck I've ever tangled with. But even if I didn't win those fights they damn sure knew they were in one. So my attitude is fight, fight, fight til my last breath.

It can be just so hard sometimes, usually in the middle of the  night when I swear I can hear this war going on inside of my body, listening to the latest salvo of death being hurled at my tough little immune system. Sometimes I picture the rockets red glare overshooting these war hardened cells not giving up seeking to vanquish the enemy. Oh shit now I'm starting to sound totally whacked.

And if I have one more person that is not positive tell me that "they know what it feels like" I might have to save some money to bail myself out of jail! Dammitt I am still a living, breathing, human being and will not be pitied or despised. Wait until they are turned away from using a toilet, or the downcast eyes of those you thought were reasonably intelligent, or feel like you got a law degree and can quote HIPPA off the top of your head after battling with your insurance company, or having someone you love tell you that "people like you deserve it" or "It's God's judgement". Well fuck em, I am not going anywhere. Period. And God is probably judging them for their hypocrisy and hatefulness. Everything is going pretty good between he and I and my faith has been the biggest sanity saving asset I've got. 21st century be damned there are still a lot of scared, ignorant people out there and we have got to stick together. Compassion I can handle, Empathy I can accept, Hypocrisy just gets my goat and Pity just makes me see red. Either love me for me as a positive person or don't let the door hit you where the good Lord split you.

But there has to be someone out there that understands knowing that you're no longer on the cliff staring out at the abyss, just taking a break, sitting on a stone that was there before you, worn down from the millions of travelers prior to your precious, unique, insignificant little soul taking a rest from this journey, catching a breath from the good fight, and admiring the stark landscape and finally seeing the flowers that grow out of such bleak surroundings. Getting up to go forward, yet leaving hope for the next person that needs a rest.

Thanks for reading, I needed to get this off my chest and out in the abyss.

God bless you all and keep up the good fight.

[Moffie65]

Whew,

Thanks for the trip, and by the way, some of us have sat on the rock, and we go there sometimes often.

All I can say as a PCP survivor is, take it easy on yourself, and don't be to hard on you, as it takes a good long time for the brain to recoup all the cells that were damaged from the fevers and the high vl.  Many of us here can tell you tales of the trips of the mind, so be sure, you have found an audience that not only does understand; we been there.

I welcome you to our family here and hope that you will find what you need to keep your life a bit more interesting.  If you haven't already met Eric, well you should!  He is one very twisted neighbor of yours, and he and his honey are living somewhere up around your neck of the woods.

Have a wonderful day and thanks so very much for sharing.

In Love and Support.

[LatinAlexander]

JNM594:

You are not alone...I just had a depression episode as well...But we can move on..We have to. We will die for sure...But the question is: Are we gonna make the time happy or shitty?  

Man, we are with you...Yes, with half a world in distance between us, but a smile away from your heart.

ALEX

[Moffie65]

OMG, you just got your icon up, and I gotta ask, is that a standard poodle you are holding?  Way cool!

In Love.

[Teresa]

JNM594,

WELCOME! Im so glad that you found us. Here you will get love, understanding, and support from everyone. You are now part of the family and we will always be here for you.

BIG HUGS
Teresa

[Jnm594]

Nope just two spoiled rotten little cocker spaniels that have been a lifesaver, them and a 16 year old crotchety cat share my cabin along with a huge aquarium with my finned friends, a herd of deer that live outside my house in my meadow, a mean old bull elk that sleeps under my deck and has been waking me up daily becuase they are in rut right now, raccoons that raid my bird feeder and sleep in my hammock, and birds that dive bomb me daily! That's my world. Sometimes I feel like Dr Doolittle. But grateful to see such beauty in nature.

I just made reservations to go see my parents in Florida and I plan to sit on the beach and swim with the dolphins for a week. And though I may have sounded out of it earlier life is getting better day by day.

[AlanBama]

Hi Jnm

A lot of us have been where you are, at one time or another, and maybe more than once or twice......

I've always called my 'ride' with AIDS a "Journey", but lately I've been referring to it more as a "struggle".   I don't know if it helps you or not, but there is a guy in Alabama who is feeling your pain, and sending you love and hugs and lots of positive energy.....

Alan

[Life]

Welcome Jnm...  Glad you have found us...  I live just across the mountain range from you..  Come up and have dinner with me and Will sometime..  We can compair our notes!!  Our doc is also in Denver so we make that trek quite often...   I hope to get to know you...

Love

[Jnm594]

Alan,

Thanks for your good thoughts from Bama! I think that "struggle" is the right word, for me anyway. Thanks again for taking the time to say hi! I grew up in the south and they say foo dis the best way to show how you feel so I'm sending you lots of butter covered biscuits and collard greens from the Rocky Mountains!

Jeffrey

[Jnm594]

Eric,

Sounds like a plan to me! Maybe we can meet up sometime, I would love to. Maybe the next time we both have to be in Denver. Let's keep in touch.

Jeffrey

[Nadine]

Hello Jnm...welcome to our family.

It's great that you found your way here!

Your story has touched me deeply.

((BIG HUGS))

[J.R.E.]

Hello Jnm,

Just want to say HELLO and welcome you. I can remember , very well the struggle that I had back in 2003, when my t-cells were at 16. It was a very difficult period of time.

You are certainly doing much better. The t-cells can take some time to rebuild( I thought it would take forever to break that magic 200 number.)

And, it is very important to get that much needed rest. I always make sure to get at least 8 hours of good sleep a day/ The body heals the best then... And nutrition plays a major role, along with ones stress levels. No one needs stress in their lives.


Once again, welcome, will be looking forward to hearing more from you.



Take care of yourself/ Thanks for sharing-------Ray

[Jnm594]

Nadine and Ray, Thank you both! And Nadine-----HOT outfit!!

[Sky]

Hello Jeffrey!  I'm glad ya found your way here    Lots of great people to talk to and become friends with, plus lots of knowledge.  You're far from alone...like you my dog has been my saving grace.  Having her around during the dark times was definitely something that helped to pull me out of the hole.  Hang in there, it's sure to get better 

{{{{{{HUGS}}}}}}

Charlie

[ndrew]

Dear JNM,

Welcome!  I am so glad you decided to be, as my idol Augusto Boal sez, an "actor in this theater of the oppressed."  I agree, alone on the cliff we are insignificant, but together we have each other to lean on.  The millions of us then can really do something!!  Don't stop doing, acting and improvising in your life.  I would love to curse us all with the charge to act, to take up whatever we have and make what we can of it.  And I would like everyone to challenge me when I roll myself up in the coat of "the victim" for to long. 

I feel lonely and isolated where I am, but often this is a choice I make.  Thank you for walking forward and sharing with us.  Sometimes just a few supportive words shared here can change the course of a day, maybe a life...

Don't be afraid to give, support and love.  Don't be afraid to ask for help when you feel like you have nothing left to give, others will hold you up...

With love and support,
Andrew