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Author Topic: "HOPE DIES LAST"  (Read 38428 times)

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Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #100 on: January 24, 2022, 10:09:39 am »



           ojo.              Hi crusbarcelona for replying…well, I’m still here after 27 years of living with AIDS (five years, and hiv 22 years. Now, after taking so many medications, I’m having problems with bone density, I had my first broken foot bone, it’s healing now, but, it’s one more pain to deal with Jessie my neuropathy and Bo be eye’s pains, I guess I will reset my brain’s pain control system, hehe, because I don’t take pain’s meds, at least until the pain is unbearable, especially, my eye’s pain, it’s awfull, I’m still debating whether n getting rid of my blind eye. It’s so difficult for me to decide get mutilated, anyway, time will tell…thanks all for reading my story, I hope, it makes some of the newly diagnosed members, realize how lucky they are, after getting the awful dx, that they won’t go through what some of us, LTS, are going through now…just take your “vitamins” everyday, and try, no, TAKE BACK CONTROL OF YOUR LIFE, that your “vitamin me” will take care of the virus and also think that, in some parts of the world, they don’t have the life saving treatments we have…good luck. There is a great life, after and hiv diagnosis, just be positive now that you are positive…hugs

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #101 on: January 24, 2022, 10:22:40 am »




        ojo.      I hope you guys, can understand, my previous post, being legally blind and using dictation on my cellphone, sometimes, my cellphone decides what to type…sorry

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #102 on: April 05, 2022, 08:12:18 am »



             ojo.          Hello again!!…well one more visit with Dracula some more results. VL=490, hopefully a blip. CD4=798, CD4%=38. Liver, kidneys, etc, normal…I never thought I would see these numbers, even my ID doctor is amazed with these numbers too bad they came to my life too late but, I’m still here…well, let’s wait and see my next visit te the vampire (in six months) to check my VL hopefully it will be UD again…let’s keep living a normal life with our buddy hiv…hugs

Offline BubbaPat

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Re: "HOPE DIES LAST"
« Reply #103 on: April 13, 2022, 01:39:16 am »
BUBBA HUGS my sunshine!!!
I am glad you are still here.  You don't realize that you make me smile and have hope!

Big HUGE Bubba Hugs from Texas!
Thank you of being you and your fantastic self!

Patrick
Bubba hugs!

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #104 on: April 13, 2022, 09:54:34 pm »





          ojo.         Aww!!, my dear friend bubba, you made my day when I read your reply in the morning, thanks for being such a great friend. I really appreciate your kind words and you can count on me if you need someone to talk to, my can even give you my cell phone number so, whenever you feel down we could talk on the phone. That’s what friends are for… I am sending you my I don’t know appreciation and positive vibes. Sunshine


Offline juliofromid

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Re: "HOPE DIES LAST"
« Reply #105 on: April 19, 2022, 04:41:11 pm »
Reading this thread made me smile and it gives me so much hope. Thank you so much for making my day! Hope we all can go through this just like you!
Julio

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #106 on: April 19, 2022, 11:46:34 pm »




          ojo.          Hi Julio, thanks for reading my thread and I appreciate your reply…I’m glad that my story gives you hope and makes you smile, reading your reply also made my day. Since I found these forums, I knew I needed to share my story because I was suppose to die two more years after my AIDS dx and, even though I lived with aids for five more years after my dx, I can’t, still, believe I’m here, that’s why I chose the name of the thread, if there was hope for me, there is hope for all of us, especially nowadys, miracle drugs, it takes just one pill a day, discipline in taking your med and a good attitude, you are back in control of your life…I will read your story and, if you need a shoulder to lean on once in a while, I have two, shoulders. Comprende?…good luck and, remember that, la esperanza muere al último…hugs

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #107 on: July 13, 2022, 08:58:31 am »



          ojo.           Hello everyone…well, if you have been reading my thread, las VL came back as 490 copies, I thought it was a blip my ID doc said, lab error, so he told me to repite the test in two to sec weeks, which a did it after two weeks. The results came back UD again, happy to see that because I have a history of resistance and I thought that, after 15 years on the same treatment, it might have gotten resistance too, but it’s still kicking hiv butt.

Well, I also commented that I have another fight to face during these 28 years of fighting hiv/aids. This new battle is due to low bone density, brittle  bones, being at risk of getting a broken bone  easily. Next month I will see a bone specialist, I will let you guys and gals know what treatment I will have to start, more meds for my poor liver and body, but we have to do what we have to do, remember, if you have read my story, as long as my mom doesn’t quit, she just turned 88 years old and was accompanying me yesterday, to see my cornea’s specialist, another battle I’m facing for the last 12 years, I’m not quitting, I’m tho, sometimes it’s so difficult, I live with pain 24/7 due to neuropathy’s pain, blindness nd eye pain, I haven’t gotten rid of it, plus everyday problems, but, it is what it is…hope dies last and who said that life was easy…I just met a 61 y/o man, hiv negative, whom takes 35 pills a day (heat transplant, diabitis, etc), I just take 11 pills a day, eight for hiv and three for my little heart. I share this because I read some new members who say, “I have to take a pill for the rest of my life”, not just us, hiv positive people take meds for life. Just think that you are taking a vitamin a day that will make you feel well and more importantly, it will keep you alive, if you are one of the lucky ones taking one pill a day, and maybe, gaining time for a cure, although, I think that taking a pill a day, it’s a “cure”, you can even have babies while on treatment, without worrying of passing the virus on to your aexual partner…sorry for the long post. Could you imagine how much longer my posts were if I could see and speak English 100%…hugs

Online SFlSurvive

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Re: "HOPE DIES LAST"
« Reply #108 on: July 13, 2022, 03:44:41 pm »
I am glad the treatment is still working for you Tonny! You have helped me so much along the way and I really appreciate it!  :)
God got me through!

Offline leatherman

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Re: "HOPE DIES LAST"
« Reply #109 on: July 13, 2022, 07:40:48 pm »
The results came back UD again, happy to see that because I have a history of resistance and I thought that, after 15 years on the same treatment, it might have gotten resistance too, but it’s still kicking hiv butt.
Great on the numbers!
Sometimes, less now than 5 yrs ago or so, I worry about "the other shoe dropping". But then it doesn't, and that's kinda freaky. But, YEA!, I'm been UD for a long time so I'll just keep thinking about that silver lining

I just met a 61 y/o man, hiv negative, whom takes 35 pills a day (heat transplant, diabitis, etc), I just take 11 pills a day, eight for hiv and three for my little heart. I share this because I read some new members who say, “I have to take a pill for the rest of my life”, not just us, hiv positive people take meds for life.
all these peeps worrying about pills. LOL I was 29 yrs old taking 28+ pills and 4 tablespoons of liquid meds a day. And thank goodness! Those meds kept me from dying. Now I'm 60 and take 2 hiv meds and 2 other pills.

Could you imagine how much longer my posts were if I could see and speak English 100%…hugs
ROFL
then your posts would look like mine! But who cares? LOL We have a lot to say and are more fun to read than those people with one line posts! screw that TL;DR nonsense and type away. LOL
leatherman (aka mIkIE)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #110 on: July 13, 2022, 08:45:19 pm »



          ojo.         @SFIsurvive, thanks for replying and I’m glad to read that I’ve been helping you reading my story…when I lost my first friend to aids, a fellow member of the Spanish forum, before his passing, when he told me he had non Hodgkin lymphoma, I told him that I was going to quit these forums because, I thought it wasn’t fair that he (TONNY), had that cancer after just one year after his AIDS dx while I had so many years since my AIDS dx and I wasn’t suffering something as lethal as his cancer, I still remember him telling me to don’t do it, he said, “you have not idea how much you have helped me and others by sharping your experiences”, so, since then, after his passing, I changed my profil name to “TONNY”, to honor him. I never asked him why TONNY with two “Ns”…now, reading your reply, I guess TONNY was right and it makes me happy knowing that by sharing my story I’m helping others. Thanks for your kind words, you made my day…hugs


@leatherman, I have told you before that your story is almost like mine, I even will turn 60 years old next month, tho, I was 32 y/o when I got my AIDS dx.

Thanks for replying to my post and you are right, I also used to take 20 pills a day in the 90s, and that nasty liquid norvir, it was so bad that I got empty capsules (from Mexico) and I filled them with that “poison” norvir…right now I’m still taking a lot of pills, eight a day plus theee more for my heart, due to etraverine.

But it’s he way, weren’t you having issues with resistance too?, and now you take just two pills?, I will talk to you my doc about the chance to switch meds, although, I know, if it isn’t broken why fixing it, or something like that, hehehe…again, thx for replying…hugs

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #111 on: August 13, 2022, 01:15:37 am »





          ojo.           Hi all!!…today I found out I have osteoporosis, one more battle that fight the n these 28 years of war against hiv/aids, and my I’m going to fight it…treatment, one injection under the skin every night for 24 months, yes!, two years, and I will take calcium citrate and vitamin D, hopefully I will reverse this condition before I break a hip or some other bone…it’s a pain in the butt living with hiv/aids, isn’t it?, but, it is what it is and I will continue to fight whatever comes my way…when there’s life, there’s hope!!…hugs and be strong

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #112 on: August 23, 2022, 11:31:32 am »





             ojo.            Hi all!!


LIVING WITH HIV has been a life changing event, it has made me more appreciative of what I have, family, friends, also, it has made me more sensible to other people’s pain.


I just just celebrated my 60th birthday, omg, I’m and old fart!!, I never thought I would live this long after everything I’ve gone through…yes!!, there is hope, there’s life after an hiv/aids diagnosis, we just need to choose to be fighters and not victims…I’ll be “seeing” you in maybe, ten more years…hugs

Offline leatherman

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Re: "HOPE DIES LAST"
« Reply #113 on: August 23, 2022, 03:01:19 pm »
Happy Birthday!!!

Congratulations on all the good times and the bad times that you got through to get to here!

leatherman (aka mIkIE)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #114 on: August 25, 2022, 11:32:32 am »



          ojo.           Hi leatherman, thx for replying, at least I didn’t spend my birthday in the hospital, tho, I was in the ER a week before my bd, I went in thinking with abdominal pain, sane kind of pain when I got pancreatitis, thankfully it was just indigestion and I was sent to see an specialist because there is something wrong with my digestive system…I’m old hehehe…thanks again mikie

Offline leatherman

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Re: "HOPE DIES LAST"
« Reply #115 on: August 25, 2022, 03:52:54 pm »
at least I didn’t spend my birthday in the hospital
birthdays NOT in the hospital are the BEST birthdays!!! :D :D

I was in the ER a week before my bd, I went in thinking with abdominal pain, sane kind of pain when I got pancreatitis, thankfully it was just indigestion
ugh. sorry to hear that.

getting old definitely has it's advantages (you're not dead is the best thing!) even if it's got some disadvantages. (like my creaky neck and my aching knee. thankfully though these days it's mostly getting-old issues and not HIV issues ;) )
leatherman (aka mIkIE)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Jim Allen

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Re: "HOPE DIES LAST"
« Reply #116 on: August 25, 2022, 10:04:19 pm »
Belated Happy birthday

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

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #117 on: August 25, 2022, 10:35:21 pm »





             ojo.           @leatherman, in 2010 I celebrated my birthday in the ICU, hemolytic anemia) I was admired 08/15 and discharged 08/23. Definitely it’s not fun being in the hospital today is your birthday, not knowing if you’re going to make it out alive, fortunately I’m still here.


I was wondering if it is true that people like me who is has been living with HIV/AIDS for so long, that we aged faster than people who are HIV negative, cording to any study that i read in the research forum. Now, I am lactose intolerant , osteoporosis, ED, hehehe, that one is a joke, “Pancho” still works…anyway, it is what it is, we have to do what we have to do to be around a few years more, by the way, I will start my osteoporosis treatment next week, one injection every night for two years. A 3900 dollars a month treatment, wow!!!. Sometimes I feel bad spending so much money when we can use that money to feed the poor, anyway…thx mikie



@jim Dublin, thank you for your reply.I like my 95 y/o uncle, I just turned 39 y/o…thx again.



Offline leatherman

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Re: "HOPE DIES LAST"
« Reply #118 on: August 27, 2022, 12:22:42 pm »
in 2010 I celebrated my birthday in the ICU, hemolytic anemia) I was admired 08/15 and discharged 08/23. Definitely it’s not fun being in the hospital today is your birthday, not knowing if you’re going to make it out alive, fortunately I’m still here.
wow. i didn't realize we had a birthday in the hospital in common too.  :o

For years I've been telling people that any day you're not in the hospital, no matter how bad the day is or how sick you are, is still a great day! ;D ;D ;D

Sometimes I feel bad spending so much money when we can use that money to feed the poor
Even though it frustrates me every time I attend some Ryan White meeting with lunch and a small pharma presentation., I understand that state funds are always tight so that offering lunch for all the attendees (usually directors or Ryan White managers who had to travel in from all over the state) and getting the food cost subsidized by a pharma rep is just good state business; but that money could have lowered drug costs or provided free meds to who knows how many (or for that matter it could have paid for my gas/travels cost to attend as an unpaid consumer. The principle of "Meaningful Involvement of People with HIV/AIDS" (MIPA) needs a lot of work in my opinion. sigh) And don't get me started on all those med adverts on American TV. Your doctor should be talking to you about what prescriptions you might need, and all these ads are a gross indulgence by fat-cat pharmaceuticals. ugh!**

But even with that rant, the real problem is that America actually has enough $$$ to feed the poor and cover the costs of our medications. Never feel bad-guilty :-[ about the situation; feel bad-mad >:( about the screwed up health care system we have that doesn't care for people.  ;)



**(sorry about that rant, POZ. ;) :D I've been around here so long you know that I understand it's a double-edged sword. I rather have your magazine available in so many clinic and doctor offices helping out PLWH even with those glossy glossy ads than not having that information available to those who need to get that information. At least those Norvir ads of cute people outdoors mountain climbing are gone - because that was just damn false advertising. >:( >:( Even though it wouldn't have helped sales, emaciated people looking for the nearest bathroom would have been a more realistic ad) and now those happy active people dancing away in those Devato ads are actually the results of taking meds these days.)
leatherman (aka mIkIE)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #119 on: September 06, 2022, 06:16:38 pm »





                 ojo.               Hi leatherman, thanks for your reply. Yes, our stories have some similarities, both being LTS, almost dying of PCP, etc, etc, even complaining about the tastefull flavor of luquid norvir, you remember it? Hehehe.


Don’t worry about the rant. I remember when I had three diferent infusions, I can’t remember the name of the med, antway, the bill came home, $164 000 omg!!, I was surprise how expensive it was. I called my insurance to find out if they would take care of the bill and, the representative is spoke to that day told me NO, I almost passed out, I couldn’t sleep that night. Next day I called back the insurance and the person I talked ti that time told me, of course we pay for it, what medicare doesn’t pay, we do, I was relieved of the stress that big bill gave me. I remember telling my ID doctor about how many poor people we could have fed and he told me, tnny2, you are worrthy, so sweet the man, wasn’t he?. Anyway, again, thanks fir your reply…hugs

Offline beauraingdance

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Re: "HOPE DIES LAST"
« Reply #120 on: September 08, 2022, 04:30:52 pm »
Thank you this is very encouraging , I was in the same situation it was a hopeless, I just kept going on ,at the same time very aware of my situation .my CD count now is in the 300 up from 15. Life for me is a complete change but not a bad life just very different. I am so happy and thank full to wake up everyday do  the same job I have passionately done  since  I was 8 years old. you seem to have a zest for life , The late stages of Aids is  something very different from having HIV ( I think). Yes! I understand what your going through, it takes a special person. Zoltan

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #121 on: September 11, 2022, 03:25:50 pm »
Thank you this is very encouraging , I was in the same situation it was a hopeless, I just kept going on ,at the same time very aware of my situation .my CD count now is in the 300 up from 15. Life for me is a complete change but not a bad life just very different. I am so happy and thank full to wake up everyday do  the same job I have passionately done  since  I was 8 years old. you seem to have a zest for life , The late stages of Aids is  something very different from having HIV ( I think). Yes! I understand what your going through, it takes a special person. Zoltan



                ojo.         Hello there!!… thanks for your reply. I am glad that your soldiers are going up, mine went from zero to 360 and they stayed like that for some many years, read mr thread, now my soldiers are 828 and my cd4%=36, UD for 15 with same treatment, no, I didn’t take one pill a day, I take 4x2 but i’m still alive…keep take ng your med/s as prescribed, aand a good attitude helps….good luck

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #122 on: September 11, 2022, 03:31:35 pm »




         ojo.           Hi everyone!!!

Well, already one week with my osteoporosis treatment. So far so good, although, I must admit, is taking me a little bit of time to adjust the this bew ritual. I feel like in the beginning half my HIV/aids treatment, almost 29 years ago. But I guess, I have to give it time to get used to it if I want to keep being around without a broken bone. I would keep you posted…hugs

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #123 on: September 29, 2022, 10:35:05 pm »




           ojo.            Hi everyone!


Well, I finished my first box of
FORTEO, treatment for osteoporosis, 28 days of injecting myself every night, ough!! what a pain in the ass, when I’m ready to go to bed, after taking my 12 pills a day and applying my mud mask for my wrinkles, I remember rhat I haven’t poked myself so, here i go, downstairs to the fridge to get my “pencil” get the needdle on and clean the tummy, where I’m supposed to go n inject myself, then, put everything back in the fridge, well, it is what it is, hopefully my neighbor hasn’t seen me in the middle of the night, through the window, with my mud mask…I’m having some myscle and bones pain due to the side effects of the med but, I’ve been living with pain for so many years that, sime mire pain doesn’t bitter me…anyone know n here with same osteoporosis?… I will keep you posted hugs

Offline leatherman

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Re: "HOPE DIES LAST"
« Reply #124 on: September 30, 2022, 08:36:40 am »
hopefully my neighbor hasn’t seen me in the middle of the night, through the window, with my mud mask
ROFLMAO
beauty always come at a cost  ;D

Hopefully that treatment will help you out although side effects always suck.
leatherman (aka mIkIE)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #125 on: November 29, 2022, 05:45:54 pm »






            ojo.              Hi everyone!



November 29 (Tuesday) 1994 I got my AIDS dx, today, Tuesday, November 29, 2022 I’m celebrating my  28th hiversary and my latest lab results, cd4 680, cd4% 34 and UD. 15 years UD same treatment “salvage “ after being sent home to wait for an OI to hill me due to resistance. No bad at all, although, it hasn’t been easy, the virus has made some damages
At, I’m still alive…HOPE DIES LAST (la esperanza muere al último)…hugs

Offline leatherman

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Re: "HOPE DIES LAST"
« Reply #126 on: November 29, 2022, 08:48:32 pm »
Congratulations!

Last weekend (11/20) I celebrated my 39th year since infection and in just a couple of weeks (12/26) I'll hit the anniversary of 30 yrs since diagnosis.

And we're both still kicking!  ;D Cheers to Us!
leatherman (aka mIkIE)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #127 on: November 30, 2022, 10:02:18 pm »






           ojo.               Thx for replying Mikie



Your story is almost like mine, I got my Full blown AIDS (do you remember the term?), dx in 1994 and my infection was eight years earlier. On Sep/Oct 1986 I got a blood transfusion in a hospital after a bad traffic accident in a freeway in Mexico, after leaving the hospital, around one or two weeks, watching rhe news on TV, the newa anchor was advising  people who has gotten a blood transfusion in the same hospital I was treated to be checked for hiv because the hospital found out that there was some blood infected with hiv. When I heard that I got scared but, I didn’t wasn’t feeling sick plus ignorance, I said to myself I didn’t get that much nfected blood, time went by and I forgot about it. Firtunally I always practice safer sex and always in long time relationships that neither if my four exes is hiv positive. After my aids dx I explained the doctor my accudent experience and asked him how I could have firgotten about the hispital advice to be checked fir hiv, he told me that it might have been related to the contusion I had in that accident, as a matter of fact, around 15 years after my accident, while taking a shower, alk if the sudden, I remembered things about the accudent that I didn’t remember, like the bus company I took to travel and the way the driver was lying on the floor out of the bus not knowing if he was dead or just unconscious, weird. Anyway, that’s part of my story. Hiv is hiv, it doesn’t matter how we acquired…what I’m not sure if you got a history of resistance to meds as I had, that’s why I almost died twice of PCP and one more time almost die of hemolytic anemia. Also got all kinds if OIs because after my aids dx I continue to live with aids for five more years. Kaletra, Agenerase and efavirenz, on the year 2000 saved me for losing completly my eyesight and of course, that treatment saved my life. I’m not sure why I’m still alive, I want to think that working ling hours while luving with aids could have helped me being here sharing my story and, working fir the federal goverment, that couldn’t fire me fir calling iff sick so many times…sorry for the long reply, not always celebrate so many years of kicking hiv’s ass, Am I right my friend?…hugs

 


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