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Author Topic: Thought it was time to post been reading for awhile hope this helps someone  (Read 3616 times)

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Offline Nevergivingup

  • Member
  • Posts: 12
  • Loving life and living it positive
Well since its coming up on my bday on 11-08 and it will also be 3 years of me living with and fighting hiv I thought I would share somethings about me in hopes of helpeing someone. I was told I was poz on my bday 3years ago this nov. I was very sick and dieing at the time. In the hospital for a very long time. My cd4 was 55 and my viral load was not good. For the first year I was very sick, had everything one could thing of from siezures to cancer. After about a year and half my cd4 jumped to 600 and I became undectable and thought finally I will make it, has you see I was not ready to go and I thought very hard to make it. So has time went by my cd4 kept going up to max of 800 and undectable. But then I started getting really depress very bad to the point I didnt want to live and that just wasnt me. I love life. My partner who I have been with for 15 years and we own our home together is not poz. (I cant explain that one) He did tell me he played with some guys that were poz and I got angry and went thourgh all of the motions. But I took control and told him  I was not throwing away 15 years of my life because of his behavior. See I am only 43 and he has been in my life along time but I wasnt going to continue has nothing happen. So I told him he was like my brother and he needed to move on and me as well. We could still live together and be nice to each other. So we seperated into separate bedrooms, I kept the master, lol, think I deserve it. But the depression got really bad I got where I would go days on end without sleeping and feeling like I was dirty and no one wanted me. The Doc loaded me up with all kinds of meds which did help but then I started having headaches went to the hospital and was told there was a mass attached to my skull, I thought how is this possible I am healthy high cd4 and undectable. After the MRI then admitted me to the hosptial and the depression hit again, that nite I had brain suregery they took out part of my skulll and the mass had grown into my brain so the suregery was very severe. They repalce part of my skull with wire mesh and sent me to intensive care for a week. After about 3 days I came to and was in bad shape and all I could thing was god I want to die. My Ex partner came and was very faithful in taking care of me and a very close friend of mine was there to. While at the hosptial I got a infection and had to go on a pic line and was on a pic line for 4 months after surgery I came home me and my little machine that was putting meds in me 24/7. Once home i just kept getting sick and getting everything under the sun again. So laying in the bed one day I decided that this was not going to kill me I am taking control and I did. I let my partner go,my friend whom was with me thur the whole ordeal found a bf and moved away so I knew it was up to me to pull it together, so I did. I still take meds for depression, 3 kinds actually and battle it everyday and also I get sick form time to time. My cd4 is 500 and I am still undectable after all of that. I can deal with the times I get sick but I have trouble dealing with the fact I feel alone even though my Ex lives with me he has a bf now, which deosnt like me,lol and there is no love lost on my part. So I go to therapy and take alll my meds and keep going. I have gone out on dates and meet some really nice guys but after seeing they had more problems then I did, no job,no car,no goals,just looking for someone to take care of them I realize I have enough on my plate without taking on all of that. But my desire to live life is solid. I will not give up and for those that feel they cant make it, dig deep inside and depend on yourself and control your own destiny. I still have my days, I feel like I am all alone spinning in a tornado I spend alot of time at home by myself, I go out sometimes just to meet people but being in the city I am its very superfacial the guys are not the sharpest. Well I am in hopes I will find good friends and who knows the love I am in need of and looking for. I want those that are feeling down to read this and know you can make it. Its ok to feel down, its ok not to want to face another day, just realize you are important and even though I my not know you, your important to me. You see when I am down or sick in bed I come on here and read and realize how courages you are, you just need to realized that. I just wanted to share alittle about me since my bday is coming up and its time I give back what so many on here have given to me. And to follow up the mass that they took out of my head wasnt cancer they are still studing it and me. Seems they think that HIV is invading organs,brain,liver,kidneys and there is no way to treat this as of right now. The mass was composed of HIV cells that the meds did not affect. But I am still undectable and high cd4 so has much as they think they know, they dont know as much as they need to, to really help us, so its up to us to get control, take matters in our hands and live life and not give up. I hope this helps someone and know that on those days your down that there is someone in florida who is reading your post and thinking of you and you are helping me with what you go thourgh.

Offline BT65

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  • Member
  • Posts: 9,904
Never, that's quite a story.  You've certainly had more than your share of maladies, and seem to be doing very, very well considering.  I think that's wonderful, and thanks for sharing that.

Just one favor I ask, though-could you please use paragraphs when posting?  Using just one loooong one, makes it hard to follow (hurts the eyes).  Thanks!  And welcome.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Nevergivingup

  • Member
  • Posts: 12
  • Loving life and living it positive
yes no problems didnt think of that

Offline WillyWump

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  • Posts: 7,137
  • your ramblings bore Yamaguchi Kitteh
Never,

Amazing story. You are an inspiration.

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline numbersguy82

  • Member
  • Posts: 292
Wow what a powerful story. I take my hat off to you and all that you have been through. I love how you have such a great outlook eventhough you have been through so much. I'm glad you decided to post here and I hope you continue to do so. I think you will find many people here who have seen the severe effects of this disease and yet they continue fighting just like you.

I don't know how you continue to live with your ex. My ex let me know on my Bday this year that he was leaving me for another guy. We tried to cohabitate for about 6 wks before I lost my sanity. I consider myself reasonable and very sound emotionally, but anyone under those circumstances would probably crack also. I hope you have let him go emotionally. If not all of that stress can't be healthy. Being friendly with an ex is one thing, but living with him and seeing him with someone else is completely different (especially when the new BF dislikes you). Food for thought as you deserve a peaceful home to rest in!

Congrats again and Happy Early Birthday :)

Alan
8/10- 73 cd4, 7%, and 300k VL *First Labs*
9/10- Started Norvir, Prezista, and Truvada
10/10- 511 cd4, 22%, and 886 VL
12/10- 498 cd4, 22%, and 106 VL
3/11- 529 cd4, 29%, and 101 VL
8/11- 620 cd4, 30%, and 74 VL- Switched to Atripla
10/11- 580 ce4, 30%, and 62 VL
12/11- 684 cd4, 31%, and FINALLY *UD*

Offline Jeff G

  • Administrator
  • Member
  • Posts: 11,221
  • How am I doing Beren ?
Wow ... Like the others say , that's quite a story and I thank you for sharing it . 

Offline WillyWump

  • Member
  • Posts: 7,137
  • your ramblings bore Yamaguchi Kitteh
Yes, I agree with Numbers. Maybe cohabitating with your ex is not a great idea. I tried it as well, and it just created alot of stress at home at night, and well it ended with me busting down his bedroom door at 3am and yanking the sheets off him and his trick and drenching them with a pot of cold water. But I digress.

However if it works for you then great, but just be aware of any stress that arises out of the situation as you dont need anymore stress in your life.

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Nevergivingup

  • Member
  • Posts: 12
  • Loving life and living it positive
Actually I let me Ex go when I was on my death bed. I wanted him to be happy and have someone in his life whom he can depend on and enjoy life with. His new bf his a good guy I believe and they seem happy and it doesnt bother me when the bf spends the night or stops by. I think the bf doesnt understand where I am at in my life. You know in the gay world how the gay boys think if you live or talk to someone then your sleeping with them. I have talk to the bf and he is slowly coming around I am just not sure if he is the one for my ex. But my ex is the only one that can determine that.

I love my Ex and sometimes in life you have to let things go that you love. Love means being able to let go but not say goodbye. He would do anything for me and has been there, butknow he is moving on and I am happy for him. I just hope this guy is the one for him.

And I am sure that this is very odd for the bf. Me being the ex and me being poz. I hope to help the bf see what life is like for those of us that have the gift that keeps on giving. I believe once the bf understands this then it will all fall in place better. The bf is very respecful of our home but just rubs me the wrong way sometimes.

You see part of the moving forward process was for me to let the love of my life go on and love someone else. When I see him smile and when he tells me about the dates he has with the bf and how much fun he has it makes my heart happy and to me that is real love. I am not sad at all, I am thinkful that he found someone that he can live life and not have to worry about me all the time.

Offline wolfter

  • Member
  • Posts: 4,460
Welcome to the forums.  Thanks for sharing, sounds like you've been through some difficult situations but are handling them adequately.  Keep it up!

You did actually allievate one fear for me.  I too have a mass that I'm having removed from my brain on Dec 10th.  I love how that's all they can call it until they actually crack me open.  But my ID also thinks mine might be a mass of dead HIV or Cryptococcal cells.  Thanks for sharing that, as I'm nervous about it.

Greg
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Nevergivingup

  • Member
  • Posts: 12
  • Loving life and living it positive
Greg it will be fine just go in with the right frame of mind. It all depends on how big the mass is and if he has gone into the brain. If it has grown into the brain like mine did I will not lie to you. You are going to have to have a good attitude because it will be a tough rode but you can make it.Just ask for good drugs.

Yea its a mass, then its not cancer, its just hiv, lol. When I was told its just hiv cells. I rember telling the doc, isnt that enough. But society associates with cancer they just cant associate with hiv in the brain. Even docs are sorta puzzled. I recall the doc saying I should write a book and I said why do you have hiv and he said no, I said then how can you know what we go thur and he laughed and said I guess your right.


Offline wolfter

  • Member
  • Posts: 4,460
I guess I'm kinda fortunate.  I switched ID doctor almost 3 years ago and he is awesome.  My old, and I mean really old, ID doctor dismissed every concern I had.  After several complains, my current doc sent me to a neurologist and the mass was discovered.  I adore my current ID doctor.  And he's hot too!  lol

From my understanding, if I didn't have HIV or Crypto, they would be more concerned.  In otherwise healthy people, this would be an indication of a tumor, but with my history, they believe it's more likely to be a pocket of dead cells that didn't eradicate from my system.  But I still had to sign consents for additional procedures in the event they discover otherwise.  I was basically OK until the surgeon explained all the possibilities.  The mass has surrounded my optic nerve (which explains my severe vision loss) and that scares the shit out of me.

Thanks again!

Greg
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline HARLEY_B

  • Member
  • Posts: 67
Re: Thought it was time to post been reading for awhile hope this helps someone
« Reply #11 on: November 10, 2010, 07:34:53 PM »
 Nevergivingup,
Thanks for sharing your story and for all the kind words of encouragement. Sincerely hope that you too know that there are others thinking of you and your well-being as well and we'll all be thinking of you wolfter as well. Please keep us posted on how you're doing. Wish I had more good thoughts to send your way but you do have my prayers.

                                                      Tim

Offline OneTampa

  • Member
  • Posts: 2,159
  • "Butterflies are free."
Re: Thought it was time to post been reading for awhile hope this helps someone
« Reply #12 on: November 22, 2010, 10:34:20 PM »
Never,

Thank you so much for sharing your story.  Come this January 2011 will mark my 26th year HIV positive.  I have gone through trials and triumphs and I can honestly say that your post was truly inspirational.

Take care.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline Theyer

  • Member
  • Posts: 2,494
  • Current ambition. Walk the Dog .
Re: Thought it was time to post been reading for awhile hope this helps someone
« Reply #13 on: November 26, 2010, 08:27:25 PM »
Never,
Welcome I am a bit flabbergasted by your story at this precise moment so aint got much to say other thank  you, glad you wrote it and welcome,welcome, welcome.
t
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline skyknife

  • member
  • Posts: 1
Re: Thought it was time to post been reading for awhile hope this helps someone
« Reply #14 on: November 27, 2010, 02:25:03 PM »
Nevergivingup -

I know it can't be easy putting all of that into words.  Thank you for showing us true courage.

SK

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: Thought it was time to post been reading for awhile hope this helps someone
« Reply #15 on: November 27, 2010, 09:24:54 PM »
Welcome Never,
That was a powerful story. I thank you for sharing it. You're courage is going to be very welcome here. Welcome!
Jeff
Positive since 1985

Offline mewithu

  • Member
  • Posts: 160
  • mewithu
Re: Thought it was time to post been reading for awhile hope this helps someone
« Reply #16 on: November 29, 2010, 10:22:12 AM »
I too Have been through a lot and am depressed but hide that. Probably not very well, but i keep on going on even though it is tough what we have to goo through all the time.
1997 is when I found out, being deathly ill. I had to go to the hospital due to extreme headache and fever. I fell coma like,  two months later weighing 95 pounds and in extreme pain and awoke to knowledge of Pancreatis, Cryptococcal Meningitis, Thrush,Severe Diarea,  Wasting, PCP pneumonia. No eating, only through tpn. Very sick, I was lucky I had good insurance with the company I worked for. I was in the hospital for three months that time. 
(2010 Now doing OK cd4=210  VL= < 75)
I have become resistant to many nukes and non nukes, Now on Reyataz, , Combivir. Working well for me not too many side effects.  I have the wasting syndrome, Fatigue  . Hard to deal with but believe it or not I have been through worse. Three Pulmonary Embolism's in my life. 2012 520 t's <20 V load

 


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