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Author Topic: Do you have these days?  (Read 17370 times)

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Offline fabio

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  • Posts: 763
Do you have these days?
« on: November 18, 2018, 07:23:35 pm »
Do you feel like some days ,no matter how much your In control you lose yourself that one day and feel like you're tired of everything for  no reason and reality suddenly reminds you that you have hiv. I think as I'm writing you this I have this one day....
When I see people living their lives with no care and being free to love and show affection,even in movies,i just feel so empty and I instantly get reminded how scared and insecure I am about myself and the fact that I am hiv positive.
I don't usually get to talk to anyone about these things,so it's a bit of a relief that someone will "listen" to what I say all the time.
So... my real question is: How do you deal with these days...

Offline JosephP

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  • Keep looking FORWARD... Dx'd 8/10/2013...
Re: Do you have these days?
« Reply #1 on: November 21, 2018, 10:43:51 pm »
Yes, some days are tough... Like waiting for the other shoe to drop. How do you deal with those days? Plow forward. Don't let hiv dictate your life. I know it is easier said that done, but needs to be done that way. A diagnosis of HIV is not an easy matter and weighs heavily in every one of us. How do we deal with it? Everyone has his/her own methodology and successes. I just make myself busy, even if it is just 'busy' work...
Today January 20, 2020, I have taken 2378 pills of my ARV since first pill. This means 79 bottles of 30 pills of ARVs at an average of $3950 per bottle or $313,103 USD for my treatment. I have a compliance of 99.83% taking my meds and only .17% (or 4 pills) non-compliant. Of these four pills two I forgot completely, One I lost and one I didn't have with me while traveling! I became UD 3 months after treatment start   ***We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds! ***

Offline fabio

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Re: Do you have these days?
« Reply #2 on: November 22, 2018, 02:26:02 am »
Yeah,I guess everyone has one,hiv or not.
I guess I felt kinda down that day haha. But now I'm quite better and optimistic. :)
You are right,we are who we Are, and we can't let hiv define us,we gonna beat this got damn thing hehe.

Offline Mindless

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  • Posts: 363
Re: Do you have these days?
« Reply #3 on: November 30, 2018, 11:38:21 pm »
I got an advice many years ago by an experienced wise friend. It goes more or less like this: when everything around you looks bad and you think there's nothing you can do, just "play dead". Meaning let yourself be drawn by the river current like a tree trunk. If there's nothing in your power to improve your condition let yourself flow, save your energy, accept you condition and just "flow" with the current of life. Wherever you'll end up it can't be worst than where you are now. Indeed, it may possibly be better. Then, with the energy you saved, you can re-evaluate your options.

M
Dx Feb. 2018, CD 320, %14

- Atripla Feb/18 -->
- Complera (generic) 2019 -->
- Dovato (generic) 2021 -->

Offline TabooPrincess

  • Member
  • Posts: 314
Re: Do you have these days?
« Reply #4 on: December 10, 2018, 02:25:07 pm »
My favourite quote when I have these days/weeks is ‘fake it until you make it’. Check the ted talk out. It works!
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline CountryMan256

  • Member
  • Posts: 13
Re: Do you have these days?
« Reply #5 on: December 20, 2018, 06:19:36 am »
I hear you dude....it's raining here today and I'm just not for it.  Meaning, it's soooo hard to remain happy because of our condition.  I'm so scared that I won't be able to live my life to it's fullest capacity given the circumstances.  Just give it time though bro and it'll get better...I have to constantly remind myself that I am still alive and breathing..ya know.  I am able to write you and also function without any help.  If you ever feeling down man just write me or these other outstanding people on here, trust me..you're not the only one feeling that way....we all have our days... Stay Up Bro.
In the end everything will be ok, just give it time...

Offline lightalltheway

  • Member
  • Posts: 159
Re: Do you have these days?
« Reply #6 on: January 11, 2019, 05:46:05 pm »
Fabio, dear,

Life span is made of ups and downs, with HIV and without it, Yes i agree: with HIV those down low moments can be lonely. If i want to reflect it on myself, i immedietly question two things: What do i have at this right moment to make me feel better? i compare my life with many others who are less fortunate and the image become more clear. The second question is what can i do to make myself feel better? it can be as simple as talking to a friend about it, writing those negative thoughts on a piece of paper. So i come, eventually, to a conclusion that life could be way harder and more lonely.

I hope my methodoligical approach will guide you.

Light all the way,
Prince

Offline fabio

  • Member
  • Posts: 763
Re: Do you have these days?
« Reply #7 on: January 11, 2019, 07:50:01 pm »
I'm really thankful that I have you guys,even though I never met you in person.
I think all of these methods have worked. Fake it till you make it sounds like a cheesy 90s movie ;). Playing dead worked even before having hiv. It rains here as well. My personal method would  be listening to cheesy 90s songs and move along,do not question everything. Some things are just so simple and seem very complex. Understanding the simplicity of it all made my life of ruin feel at ease.
So I would like you guys to promise me one thing. Even though we get bad days,let's get through them together here or spiritually.
Thank you all for your replies. I am feeling a lot better and I hope you are too 💚.

Offline Mindless

  • Member
  • Posts: 363
Re: Do you have these days?
« Reply #8 on: January 13, 2019, 12:18:29 am »
So I would like you guys to promise me one thing. Even though we get bad days,let's get through them together here or spiritually.
Thank you all for your replies. I am feeling a lot better and I hope you are too 💚.

Thanks Fabio, appreciate your thought. I woke up this morning with that gloomy mood that accompany many of my awakenings (though it’s  almost 2 years from my dx now) and found encouragement in your words.

M
Dx Feb. 2018, CD 320, %14

- Atripla Feb/18 -->
- Complera (generic) 2019 -->
- Dovato (generic) 2021 -->

Offline fabio

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  • Posts: 763
Re: Do you have these days?
« Reply #9 on: January 13, 2019, 06:21:08 am »
I'm very glad and hope you feel a lot better day in day out. Life is a lot more than this stupid hiv.
On the contrary I woke up this morning craving carbonara..... 😅😅😅

Offline Jim Allen

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Re: Do you have these days?
« Reply #10 on: January 14, 2019, 03:58:08 pm »
Hi

I got an email and someone asked me to add this video to your thread, many people keep living full lives with disabilities.


"Adriana Macías: una mujer sin brazos que inspira a miles de personas"
"Adriana Macías: a woman without arms that inspires thousands of people"


https://youtu.be/4AotHDlfK9I

HIV 101 - Everything you need to know
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Offline fabio

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Re: Do you have these days?
« Reply #11 on: January 15, 2019, 05:33:58 am »
Thank you for posting that video Jim. And also send my thanks to the person who emailed you.
I can see how life won't stop with a tragedy or "misfortune" on the other hand it's gonna keep going nicely. The whole situation actually made my life go on. Before having hiv I was a kid stuck in the past,bullied since I was young,my parents worked 2 jobs and i didn't have friends. Time passed and I was stuck in the past. I guess I'm now living the present and accepting the past and moving on. Hiv is yet another trial,but I'm not gonna waste what precious life  i have worrying like I did back then. I'm gonna make everything count.
The woman in the video,and another girl (a girl with an autoimmune disease that makes her skin harden) give me courage that life isn't limiting. That girl also has the best goth look as well...hehe
Again send my thanks to the person that emailed you.
« Last Edit: January 15, 2019, 05:36:58 am by fabio »

Offline Jim Allen

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Re: Do you have these days?
« Reply #12 on: January 15, 2019, 06:16:34 am »
Will do

Jim
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
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Offline gar878

  • New Member
  • Posts: 2
Re: Do you have these days?
« Reply #13 on: January 21, 2019, 06:36:51 pm »
Que alegría leerte, sabes hay días que me siento mal por padecer algo que ya debería tener cura, que no importara si quieres tener un mejor empleo.
Pero creo que lo mejor esta por venir , ojala y que pronto estemos brindando por nuestra salud y decir lo logramos .
por que los días serán mejores para todos y que esta luche termine.
Un abrazo

Offline ethanmiller

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  • Member
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Re: Do you have these days?
« Reply #14 on: August 20, 2019, 04:03:51 pm »
How would you manage those days? Try not to give hiv a chance to direct your life. I realize it is simpler said that done, yet should be done that way. A determination of HIV isn't a simple issue and weighs intensely in all of us.

Offline Jim Allen

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Re: Do you have these days?
« Reply #15 on: August 20, 2019, 05:53:03 pm »
@ethanmiller

Welcome to the forum, as a new member could you please open an introduction thread and, introduce yourself to the forum members that would be greatly appreciated. Either in the "I Just Tested Positive" section if you are newly diagnosed or "Living with HIV" section if you have been living with HIV longer.

You could perhaps start with as an example; How you are getting on? What treatment are you taking, how is that going? What your labs are like etc etc

Thank you

Jim
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

My Instagram
Threads

Offline Jim Allen

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Re: Do you have these days?
« Reply #16 on: September 04, 2019, 03:12:20 pm »
@ethanmiller

@ethanmiller

Welcome to the forum, as a new member could you please open an introduction thread and, introduce yourself to the forum members that would be greatly appreciated. Either in the "I Just Tested Positive" section if you are newly diagnosed or "Living with HIV" section if you have been living with HIV longer.

You could perhaps start with as an example; How you are getting on? What treatment are you taking, how is that going? What your labs are like etc etc

Thank you

Jim
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

My Instagram
Threads

Offline Wolfie123

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  • Posts: 22
Re: Do you have these days?
« Reply #17 on: October 21, 2019, 08:20:54 am »
When I found out I had HIV.. everything was  trigger word my co worker told me "wrap it up" referring to these stacks of pallets we wrap with plastic. I immediately thought to myself "I should have".. or looking at people shopping and living free of this virus.. thinking the judgement I'd face from all communities  especially the gay community. I couldn't listen to music  because certain words or verses were trigger words(some still are)I still haven't told my mom.. it would be days I go to work crying on and off lost in thought... it's gotten better and it crosses my mind less but man does it hurt sometimes. I live alone so thinking about what to do next comes often. I just take it a few steps at a time and set goals to get to and move on to the next... I hype myself up like "bitch you have a brand to build" in this ordeal I found out I wanted to start my business and I wanted more for myself. I recently  discovered I'm obsessed  with becoming a home owner so i wrote it down  with other goals and i just take steps towards them every day. I i hope days like this lessen for you and best of luck in all you do!

Offline Mindless

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  • Posts: 363
Re: Do you have these days?
« Reply #18 on: October 21, 2019, 01:17:26 pm »
When I found out I had HIV.. everything was  trigger word my co worker told me "wrap it up" referring to these stacks of pallets we wrap with plastic. I immediately thought to myself "I should have".. or looking at people shopping and living free of this virus.. thinking the judgement I'd face from all communities  especially the gay community. I couldn't listen to music  because certain words or verses were trigger words(some still are)I still haven't told my mom.. it would be days I go to work crying on and off lost in thought... it's gotten better and it crosses my mind less but man does it hurt sometimes

Hi Wolfie,

I can totally relate to this (recurring thoughts triggered by words, things etc.). If I can humbly give an advice, I found help in a technique called "defusion": not easy to explain in a few words but easy to practice. If you want to know more check out "defusion" in ACT (acceptance and commitment therapy), you can find free online resources and very good books (ex. Get out of your mind and into your life by Steven c. Hayes). As I said, I suggest you give it a try, better if supervised by a professional but for starters you can do it also by yourself.

Hugs
Dx Feb. 2018, CD 320, %14

- Atripla Feb/18 -->
- Complera (generic) 2019 -->
- Dovato (generic) 2021 -->

 


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