Welcome, Guest. Please login or register.
July 21, 2024, 12:18:07 pm

Login with username, password and session length


Members
Stats
  • Total Posts: 774139
  • Total Topics: 66457
  • Online Today: 573
  • Online Ever: 5484
  • (June 18, 2021, 11:15:29 pm)
Users Online
Users: 0
Guests: 210
Total: 210

Welcome


Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Do I Have HIV?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: "HOPE DIES LAST"  (Read 93660 times)

0 Members and 1 Guest are viewing this topic.

Offline leatherman

  • Global Moderator
  • Member
  • Posts: 8,699
  • Google and HIV meds are Your Friends
Re: "HOPE DIES LAST"
« Reply #200 on: April 12, 2024, 12:36:45 pm »
So while we're waiting to board our first plane today heading home, I'm checking up on the forums and was wondering how your recovery is going. I hope you're doing well!
leatherman (aka Michael)

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

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #201 on: April 13, 2024, 01:33:05 am »



                 ojo.             @ Leatherman, hello my friend, I am doing better, although my eye is still swollen no more pain tho. The inside of my eye still looks red, it  suppose to be white after everything heals inside. I will see the surgeon until May 28, then he will send me to the clinic where my prosthesis will be made…I will keep you posted and thanks for asking… Hugs

Offline leatherman

  • Global Moderator
  • Member
  • Posts: 8,699
  • Google and HIV meds are Your Friends
Re: "HOPE DIES LAST"
« Reply #202 on: April 13, 2024, 07:55:49 am »
I am doing better, although my eye is still swollen no more pain tho.
I know this isn't how you would have really wanted things to go; but I am glad for you to hear that you're not in pain. Healing is always a slow process, and you're getting there little by little!  ;)
leatherman (aka Michael)

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

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #203 on: April 14, 2024, 12:56:14 pm »



                Ojo.         @ Leatherman, yes my friend but, it is what it is, since I got diagnosis of AIDS, I’m still fighting. For some reason, I had treatment failure since the beginning of treatment. That’s why I am in the situation that I am in, in addition to some medical errors but I’m still fighting and trying to not be bitter  about it. If I knew then what I kniw now, I wouldn’t allowed the retinal specialist
Some treatments that I didn’t need back then, but like I said, it is what it is and all of us we were learning how to treat CMB retinitis. But I can’t complain, I have had a good life, sometimes a little difficult but still life itself. Because even though what I’m going through, living with HIV, legally blind, osteoporosis, injecting myself every night, neuropathy pain 7/24 Life is still good. Well now I have to wait for my eye to heal completely and get my bionic. Hi, I would be the $6 million man. I will get you posted, so far so good, and then they prosthesis… Thanks for keeping an eye on me I really appreciate it and I will keep you posted… Hugs

Offline leatherman

  • Global Moderator
  • Member
  • Posts: 8,699
  • Google and HIV meds are Your Friends
Re: "HOPE DIES LAST"
« Reply #204 on: April 14, 2024, 08:39:01 pm »
But I can’t complain, I have had a good life, sometimes a little difficult but still life itself
life itself! amen to that.

if anything good comes from long term survivor guilt, it's that I appreciate, even through the tough times, that just being alive is the absolute best fking thing and if I waste it or don't appreciate it, it's my own damn stupid fault. RIP Randy and Jim for showing me that life at it's hardest is still better than being dead.

Bionics? Oh hell yeah! For as good as I'm feeling at 62, I'm still 62 after a lot of AIDS, with a screwed up shoulder that really is going to be a terrible problem some day. I could use some bionics to spruce up a few joints, also some extra memory (since that's always been a problem) would be nice.  ;D
leatherman (aka Michael)

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

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #205 on: April 15, 2024, 12:18:29 pm »



             ojo.        @ Leatherman, Yes, my friend, is better being a life than dead. I would be 62 in August, like I said your story is more or less like mine. I also going to need surgery for my shoulders because I have a vascular necrosis and I will need both shoulders replacement but so far not that much pain. This problem with their avascular necrosis is 22 they use of prednisolone so watch out whenever some doctor prescribe prednisone and ask if it is necessary because there are some doctors that even for an infection they keep prednisone in addition with the antibiotic, that happens to me once and obviously I didn’t take The prednisolone.


I don’t know if you guys remember that I mentioned that my cousin had colon cancer and it metastasize to her liver and pancreas, today early morning, she died,R.I.P. she was as strong lady , fought cancer for five years, thankfully, we just got a virus that it is manageable as long as we take our medication as prescribed… my sisters cancer so far so good. She is done with her treatment and now just waiting for her reconstruction of her breast..… Hugs


Offline Jim Allen

  • Administrator
  • Member
  • Posts: 22,704
  • Threads: @jim16309
    • Social Media: Threads
Re: "HOPE DIES LAST"
« Reply #206 on: April 15, 2024, 01:15:07 pm »
I am doing better, although my eye is still swollen no more pain tho.

Sorry that you had to go through this but glad to hear that the pain is gone and you are doing better.

Hugs and keep us posted.
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 Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #207 on: April 15, 2024, 08:59:15 pm »



             ojo.           @JimAllen, thank you, my friend for Reading sometimes even long timers need to hear from others because sometimes I feel like throwing the towel. But it is what it is we had to do what we had to do if we want to keep having a good quality of life. I really appreciate you lines, and of course I will keep you guys posted… Ha

Offline Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #208 on: May 02, 2024, 03:08:58 pm »



           ojo.            Hello everyone!… In 1998 while I was  living with aids, 0 cd4, I was still working since my diagnosis in 1994, I thought to myself that I was going to beat aids and decided to get a mortgage to buy a house, in the back of my head, I thought that if I work today, the bank would take the house back. Anyway, I remember back in the day that lots of people who were diagnosed during the 80s and early 90s when getting a Diagnosis of HIV was a debt sentence, they would go and maxed up their credit cards to get their last vacations, etc., etc., I decided to keep working and I think that working my life, anyway, when I going is to let you guys know that today I paid off my mortgage, even though I became legally blind in 2000 fortunately, I still could make my mortgage payment with my pension and Social Security… Never lose. Hope, there is always slight at the end of the tunnel, sometimes it seems very difficult to keep going, but you had to hold onto something to go on with your life because there is life after HIV diagnosis… This is part of living with HIV…hugs



Ps. I’m sorry for the typos

Offline leatherman

  • Global Moderator
  • Member
  • Posts: 8,699
  • Google and HIV meds are Your Friends
Re: "HOPE DIES LAST"
« Reply #209 on: May 02, 2024, 07:10:40 pm »
today I paid off my mortgage
OMG!! :) :)
Congratulations!!!!!
That's a great accomplishment.
leatherman (aka Michael)

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

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #210 on: May 02, 2024, 07:56:03 pm »



                    ojo.            Thanks leatherman, noe I can start making plans tomorrow move down south to Texas (border line) to be closer to family. Thanks for replying… Hugs.

Offline Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #211 on: May 02, 2024, 09:09:38 pm »



            ojo.            Hello again!… I was thinking that back in the day before I started having problems with CMV retinitis, I would tell my doctor, they should specialist, that I wanted to buy me a new car and I remember he telling me, no if I were you, I would wait, I think he knew that I was going to go blind I was going to die, then I go and get a mortgage for 30 years. Like I said, I told to myself if I die, the bank would take the house back problem solved, but I never thought the same about buying me a new car. I guess I was too happy  with my Mercury cooler otherwise I wouldn’t have listened to the doctor… Those years were really bad and we had to take difficult decisions like Leatherman stopping Sustiva come. I remember the awful taste of Ritonavir, and we, still took it, The tablet Videx, The T20, Fuzeon, an injection every night, leaving me, some bumps on my tummy, the huge capsules, I can’t remember the name of the medication, but I remember that I had to take six in the morning and six at night because of the interaction with Ritonavir, well now to survive this chronic condition all it takes is one pill day, how lucky you guys are!… Sorry for the rant

Offline leatherman

  • Global Moderator
  • Member
  • Posts: 8,699
  • Google and HIV meds are Your Friends
Re: "HOPE DIES LAST"
« Reply #212 on: May 06, 2024, 10:12:02 am »
I was going to die, then I go and get a mortgage for 30 years
My first partner and I signed a 15-yr land contract. By that point, I knew Randy wasn't going to making it very long and figured I wouldn't either. It seemed like a fine deal to us as dying 30yr olds. At least we'd have a home while we got sick and died; but we've never have to worry about paying off the land contract.

However, even though Randy passed away a year later, I survived and lived there for another 14 years through a few roommates to help pay the bills. The home we were supposed to die in become the home I was going to pay for and own. Unfortunately, and the bad part of a land contract, my landlord took a two week late payment (I had just been in the hospital dying, and then not dying of pneumonia) to end the contract, screwing me out of the house - but leaving me able to move in with my second partner, which did turn out to be a good thing out of a bad situation.

Larry and I has some conversations about that old situation of mine when we were coming up on signing the mortgage for the house we live in now. At the end of this mortgage I'm going to be 87. Even though I joke and hope about living until 104 like my grandmother, there is the possibility that I won't make it that long. So twice now I've signed papers for a home and mortgage that I might not live to fulfill. At least this time I'm expecting old age not AIDS to be the reason.
leatherman (aka Michael)

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

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #213 on: May 06, 2024, 02:46:10 pm »




              Ojo.             @leatherman, nowadays, everybody with an HIV  diagnosis  can keep making plans for the future because of better treatment and we know more about the virus.… There is life after an HIV diagnosis we just have to have the courage to keep moving on… Hugs

Offline Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #214 on: May 15, 2024, 05:12:13 pm »



                  ojo.              Hello everyone!… Well, I saw the ID doctor last week and as usual, tells me that if not were for my neuropathy pain and my vision problems, I would be healthier. He also said that there is nothing else in his toolbox to use to help, but my treatment is still kicking because,, since January 2007, I’ve been taking the same treatment and is still working. Soldiers between 700–800, I forgot my percentage and as I said, still undetectable. I can’t complain because even though my pain and blindness, I’m still alive and on here sharing with all of you my story of Survival… After all, there is life after an HIV diagnosis specially nowadays…


I also, yesterday, saw the Corne specialist and My Kia is stable, also we can’t do anything else for it but at least it’s stable, here replace a special contact lens that I’ve been wearing since November 2010 after my stem cell surgery. Also, he check my blind eye. and he says that everything looks fine. The 28th of this month I will see the surgeon and he would be the one who will decide when I will become. They won million men, when to get my bionic eye. Seriously, it is just a contact lens, plastic one, with the iris and pupil painted to make it look like a real eye. It would be nice that there was such a thing as a bionic eye… I will keep you guys posted… Hugs.



Ps. sorry for the typos

Offline Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #215 on: May 18, 2024, 06:39:42 am »



        ojo.              Hello everybody!… Hoping teverybody is doing OK. I’ve been taking the same treatment, Prezista (Sarunavir), Intelence (Etraverine), Norvir (Rite navir and Isentress (Raltegravir) since January  2007 and I just going to start taking the
Genetic form of Norvir and Etraverine, I started Darunavir four months ago, I think,
The only one that is still brand medication is
 Isentress, I think he will be available in genetic form in 2026. Before the assistance truck programs I was Spain out-of-pocket $75 for three months for each of my brand medication now I only will pay $10 for three months supply although Michael payment is paid by my copayment assistant program. Let’s see how safe this genetic medication’s are, I read, darunavir comes from INDIA. I will let you know what happens. I know that they are supposed to be the same that the brand medication… Hugs

Offline Jim Allen

  • Administrator
  • Member
  • Posts: 22,704
  • Threads: @jim16309
    • Social Media: Threads
Re: "HOPE DIES LAST"
« Reply #216 on: May 18, 2024, 12:42:15 pm »
Hiya.

It will be fine, true generic drugs have the exact same active ingredients, no difference whatever, so the same drug but cheaper.

Hope you spend the savings on something nice for yourself. Hugs.
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 Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #217 on: May 18, 2024, 07:34:43 pm »



            ojo.         @JimAllen, thanks for replying…I will save some money to visit  Ireland…hugs

Offline Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #218 on: May 20, 2024, 05:18:12 pm »



              ojo.           Hello everyone!… It has been almost 2 months after my surgery and it seems that it wasn’t worth it to get this surgery because I’ve been having the same pain that I had before my surgery for the last week. Next Tuesday 28 I will see the surgeon and I hope he has a good answer. It is so frustrating when you are hoping to solve a problem and he doesn’t get solved as a matter of fact, I have to have this surgery because of the result of bad previous surgery. Well, it is what it is, life goes on… I will keep you posted. I’m sorry for the rent… hugs

Offline leatherman

  • Global Moderator
  • Member
  • Posts: 8,699
  • Google and HIV meds are Your Friends
Re: "HOPE DIES LAST"
« Reply #219 on: May 20, 2024, 06:34:59 pm »
it seems that it wasn’t worth it to get this surgery because I’ve been having the same pain that I had before my surgery for the last week.
Oh no!! Sorry to hear that. Hopefully with some more time, this pain will still go away.
keep hanging in there!
leatherman (aka Michael)

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

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #220 on: May 20, 2024, 08:22:26 pm »



            Ojo.             @leatherman thanks for replying. I really hope so that the pain we go away because it gets really bad sometimes. Let’s see what the doctor has to say about it. I would keep you posted… Thanks again for being there for me… Hugs.

Offline BubbaPat

  • Member
  • Posts: 163
  • Bubba hugs!
Re: "HOPE DIES LAST"
« Reply #221 on: May 21, 2024, 03:10:58 am »
Howdy sunshine!!
Sorry you are going through this.  Wish I was there to give you a big Bubba hug!  Let you know you are loved and folks are thinking of you.
Hope your are better soon!!

Patrick
Bubba hugs!

Offline Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #222 on: May 21, 2024, 10:17:55 am »



                Ojo.            Thank you very much, my friend, Patrick, I really appreciate your hugs, I am going to be OK, sometimes I feel frustrated. Like I said it is what it is, I have been through a lot that this situation is not going to defeat me… You are such a sweet guy, I like you a lot, you made me smile every time I read you, well, as should say, when my cell phone read your messages to me… Abos

Offline Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #223 on: May 28, 2024, 09:28:08 pm »



               ojo.        Hello everyone!… well, I saw the surgeon today. He says that everything is healing perfectly and now I can go and get my biotic eye. he says that the pain he thinks it will go away with time, I hope so. I will  be seeing him in three months or before, if my pain is giving me problems. As usual, every time that I have surgery, something goes wrong, I hope, this is not the case and with time my eye pain will disappear… But anyway, with pain or without life goes on … I will keep you posted… Hugs

Offline Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #224 on: June 05, 2024, 05:00:46 pm »



               ojo.          Hello everyone!… Today I had my second bone density test, first one was two years ago, apparently poking myself every day been worth it because my numbers are better, although I still have osteoporosis. This is due to, according to the doctor, because of my chronic Condition. I will keep poking myself until October and then I will start taking a pill day for three years. It is what it is we had to keep fighting until I stop breathing because life is worth it even leaving with pain 7/24, being legally blind,  And even injected myself every day. I know people who are diabetics and some of them had to inject themselves four times a day so I shouldn’t be complaining… There is  life after an HIV diagnosis even after living almost 30 years with this condition since my diagnosis of aids… I will keep you posted… Hugs

Offline Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #225 on: June 15, 2024, 05:38:37 pm »



            ojo.            Hello everyone!… Well, so far so good with the pain in my eye after the surgery, it looks like it’s gone. I’m happy for that because if I got rid of my blind eye, it was because of the pain and after the surgery,  two months after, I was getting pain so I was feeling frustrated but lately I haven’t felt pain so I guess I’m ready to go and get my bionic eye. I have one but it bothers me I guess the curvature is different so I had to go and make an appointment so they can take measurements to make a new one. Even though it’s just like a big contact lens, it is a bit expensive, I think that my insurance paid around $2500 I wonder how much it’s gonna cost now. We’ll see. I have to get that bionic eye done before
August because I have a wedding in Cancun Mexico. Poor of me, how much I’m going to suffer in the Riviera Maya lol. I think that I deserve a nice vacation, don’t you think so?… Hugs

Offline leatherman

  • Global Moderator
  • Member
  • Posts: 8,699
  • Google and HIV meds are Your Friends
Re: "HOPE DIES LAST"
« Reply #226 on: June 16, 2024, 06:55:09 am »
I know you've been hurting for quite a long time so I'm very glad for you to hear that the pain is gone.  :-* :D

Enjoy the wedding and vacation!
leatherman (aka Michael)

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

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #227 on: June 16, 2024, 10:05:27 pm »
M





                       ojo.                   @leayherman, thanks for replying. Yes, it has been quite A long time suffering with headaches due to the blind eye. I think that with my neuropathy pain is enough to handle, right now I having problems with bunions in both of my feet because of the toes. Some more pain to deal with and definitely, I don’t want more surgeries. I wonder if you being a LTS too are having these kind of problems with neuropathy., what say you?… Again, thanks for replying and thanks for the good wishes but still a couple of months away my vacation… Hugs


Ps i’m sorry for the typos.

Offline leatherman

  • Global Moderator
  • Member
  • Posts: 8,699
  • Google and HIV meds are Your Friends
Re: "HOPE DIES LAST"
« Reply #228 on: June 17, 2024, 10:42:38 am »
are having these kind of problems with neuropathy
since 1990-something and Zerit, most days my feet feel like I'm walking on hot sand. Not quite like burning hot sand that you have to run across saying "oh, aw, ouch", but warm enough you want flip-flops. About four days a month it really feels like burning sand that I can get off of fast enough.  :o

I tried a couple meds, but I'm kinda sensitive to meds (half doses of pain meds or antihistamines are almost too much), so the neuropathy meds kind of dope me up so I don't do them. A weed high is better and more effective....I just imagine I'm at the beach when they really hurt and I'm ok. LOL
leatherman (aka Michael)

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

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #229 on: June 17, 2024, 01:12:03 pm »



                ojo.             Hello there!… I took  Zerit, Videx and Hivid, I think that’s the reason, besides HIV, of my neuropathy. I know the feeling, Burning sensation sometimes the opposite, very cold feet. but you don’t have problems with drop foot or drop toe?. I remember our friend Miss Phelicia (I think that was his username) he was dealing with the same issues that I have.… I didn’t take any medication for my neuropathy because none helps… well, I guess it is what it is, we had to keep living with pain… Thanks again for replying… hugs

Offline leatherman

  • Global Moderator
  • Member
  • Posts: 8,699
  • Google and HIV meds are Your Friends
Re: "HOPE DIES LAST"
« Reply #230 on: June 17, 2024, 07:01:59 pm »
Zerit, Videx
drop foot or drop toe
oooh. i forgot about Videx. mmmm that chalky goodness.  :o

It's funny (well, not funny funny, as much as an interesting observation) that these forums aren't filled with talks about side effects anymore. Heck. I bet half the traffic in these forums has declined just by no one discussing med side effects any more. Yea! Thanks to medical advancements the meds are sooooooo much better these days. :D

Well, I've always been kinda klutzy. One weak ankle that can sprain by just walking down a flat hallway, and being in my early 60s now seem to be the main reasons for any mobility issues I have. :D
leatherman (aka Michael)

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

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #231 on: June 18, 2024, 09:01:59 am »



           ojo.             Well, I’m glad you don’t have to deal with drop foot and toe because it is a pain in the butt, Literally, especially when you try to sleep you do not know in what position to sleep on your mattress.


And yes, you’re right, nobody else talks about the toxicity of the medication, are we lucky?. Definitely, as you said, the advancement in technology it’s making this condition livable with less side effects.… Thanks again for replying and hugs.

Offline Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #232 on: June 20, 2024, 10:45:58 am »



              ojo       Hello everyone!… I guess that the good thing about having HIV is that you are checked for everything while people who are negative down to often. Saturday we have a colonoscopy. I have to have it done every five years because of history of colon cancer in my family. My brother, the oldest one, died of colon cancer eleven years ago and my first cousin just lost her battle to cancer last month 😔… So Stomorrow liquid. diet all day long and Saturday at 11 AM my procedure. In the preview colonoscopy, they found a polyp, but it wasn’t anything to worry about.


Last June  nine my must loyal supporter, my mother, just turned 90 years old, she has been fighting with me HIV/AIDS For the last 30 years. And she still goes with me to my doctors appointment.… OK I will keep you posted about the results of my colonoscopy.… Hugs

Offline Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #233 on: June 23, 2024, 12:32:00 pm »



                ojo.              Hello everyone!… I had my colonoscopy done yesterday, the doctor found five large polyps, there were sent to the lab. I asked him why they were so large. He said that maybe genetics he doesn’t think that I had to worry about anything, but we had to wait for the lab results. So I told him, OK. I see you in five years and he said nope we have to do it again in one year. We’ll see what happens.


I wonder if taking medication for 30 could have something to do with polyps or some kind of cancer, maybe our nice moderator could chine in and help me understand this.… Like I said before, living with a Chevy has its advantages because we see our doctors every six months and if there is something wrong, we can cash whatever might be on time. In my case, I had to have colonoscopies every five years, because my older brother and my cousin die of column besides that I guess because I’m over 50 recommended to have it done anyways.… I will keep you posted …hugs



Ps. sorry for the typos

Offline leatherman

  • Global Moderator
  • Member
  • Posts: 8,699
  • Google and HIV meds are Your Friends
Re: "HOPE DIES LAST"
« Reply #234 on: June 26, 2024, 07:36:13 am »
He said that maybe genetics he doesn’t think that I had to worry about anything, but we had to wait for the lab results. he doesn’t think that I had to worry about anything, but we had to wait for the lab results.
 ...
I had to have colonoscopies every five years, because my older brother and my cousin die of column besides that I guess because I’m over 50 recommended to have it done anyways
sorry to hear about the polyps and hopefully they are nothing.

sounds like it could be hereditary.

for my husband, colonoscopies are a touchy issue because of how ours went. :D

I had spent so long thinking I was going to die of aids. 15 yrs of being just a step away from death will give you some serious ptsd....especially if you end up recovering and getting better again. So I put off the colonoscopy that you're supposed to get at 50 until I was 56. Oddly enough not dying and getting healthy again, even as I was getting physically older for a decade, will give you a a different kind of ptsd. LOL So now I had to be responsible for my long term health.

Grudgingly still, I did the prep (when I learned jello is NOT food) and took the stupid test and got told no polyps and a very clean colon. I don't have to test again for a decade! Woot! Larry, who is 5 years younger than me, had his colonoscopy at 50 like you're supposed to and had one polyp removed, with his next test in 5 yrs. I keep telling him because my late testing was so good that I'm not going to do it again...but I'll be there to help get him through his next one. ;) :) LOL
leatherman (aka Michael)

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

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #235 on: June 26, 2024, 02:51:09 pm »




           ojo.            @leaherman, thanks for your reply. Let’s see what the lab’s Results and I would keep you posted. Am glad that you don’t have any colon issues and happy to know that you are there for Larry… Hugs for both of you.

Offline Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #236 on: July 03, 2024, 08:22:03 pm »



                 
    Ojo.           Hello everyone!…well, finally, I got the results of the polyps that were sent to the lab after my colonoscopy, everything came back benign although my next colonoscopy will be in one year, that concerns me a little bit because it’s supposed to be every five years, I wonder why the doctor wants to do it sooner. It is what it is, Alice I agoing to be checked, better safe than sorry… Hugs

Offline Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #237 on: July 09, 2024, 04:49:07 pm »



                  ojo.                Hello there!… Yesterday While reading a post about being concerned, find the cure for HIV which I replied twice. It made me go back to those difficult days after my diagnosis when we didn’t have to even think about that, the queue, we would think about finding another medication to treat the virus. I even remember that some people who knew that MX sex partner had die of aids, they didn’t even get tested for it because they knew that they were going to be next. In my case, as I said it on my thread, after my diagnosis, I dedicate myself to work and I think that working saved my life, even though I will go to work with an IV on my arm having to hide it wearing long sleeves shirts, even during the hottest days of summer, I remember one of my coworkers asked me why the long sleeves… when the IV has to come out because of the medication I was using was to hard for my veins. I had to use a peeck line, not sure if that’s the correct spelling, but I had to cover the end of the line on my wrist. I Felt like Spider-Man. that post brought me I left or painful memories, to tell you the truth I don’t know how is it that I’m still alive. I think that I was lucky to work for the government or otherwise I guess because I missed too much work sometimes even for a whole month, I couldn’t work because of so many opportunistic infections. I got an multiple surgeries, that I didn’t get fired from work.



Sometimes when I read people complaining or saying “I had to take a pill for the rest of my Life “it makes me feel sad because I guess nearly diagnosed people having had a chance to read at least once of our longtime story, survivors, how was for a lot of us to deal with this virus that back then was a killer virus. Even when some newly diagnosed people, that they say “can I keep taking my cocaine with my medication? “, ABC just said to read that knowing that doing drugs, it might be the reason why these people getting infected, but, anyway, it is what it is… I’m sorry for the rant, but I think nearly diagnosed people to read how people back in the day dealt with this pandemic… Hugs.


PS. Sorry for the typos and punctuation. I am dictating to my cell phone and it types whatever it wants

Offline Brian1966

  • Member
  • Posts: 10
Re: "HOPE DIES LAST"
« Reply #238 on: July 10, 2024, 08:56:15 am »
I'm amazed when I read stories like yours and about the things endured to stay alive in the early days of this disease.  I can't help but respect the inner strength and determination that getting through those darkest, early days must have taken.

Thank you for sharing your story.

Offline Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #239 on: July 17, 2024, 10:00:27 pm »




               ojo.             @Brian1966, thanks for reply. Yes, those early years of the pandemic were bad let alone bad n the 80’s. I was diagnosed in 1994 by then we had three or four medications, toxic medication. I know that my friend Lederman doesn’t like determ toxic, but there were toxic so sick, that you with get body changes specially they’re so called “AIDS FACE”, or the hump on your back or some people would get it around their neck. Another toxicity, neuropathy, pain, anemia, etc., etc. Indeed I felt bad for all of us, people, thankfully the only problems I got with those to toxic medication’s (side effects)  are neuropathy, some Lipo atrophy, and I got several episodes of anemia with AZT to the point that I had to get  several blood transitions. Although I should say that everybody reacted different to thoae meds, but guess what?, some of us made it alive, I’m one of the lucky ones, I should confess that I lost some battles to HIV/AIDS but I haven’t lost the war that it…I’m glad that the newly diagnosted people don’t have to go through what we all timers went through,  you should consider yourself lucky of acquiring The virus after HAART, we all know how the virus is acquired even after 40 years of pandemic we are still getting   “lucky” new members, but it is what it is, now we know we have the virus. Now we treat it with one vitamin at day… hi done try to offend anybody I’m just trying to be realistic. I’m sorry for the rent and I have to stop typing because my poor eye is tearing… thanks again for replying… Hugs


Ps. sorry for the typos and I hope you understand my post. English is my second language and I’m legally blind.

Offline leatherman

  • Global Moderator
  • Member
  • Posts: 8,699
  • Google and HIV meds are Your Friends
Re: "HOPE DIES LAST"
« Reply #240 on: July 18, 2024, 06:20:55 am »
I know that my friend Lederman doesn’t like determ toxic, but there were toxic
No, I got you Tonny. ;) :)

AZT, Videx, Norvir, Kaletra et al. were sort of toxic. For us, those dosages were too high and those meds weren't effective enough against HIV. Anyone who wants to call 1990 meds "toxic", well that's good by me. :D

Just don't be saying that nonsense about the meds in the 2020s. ;) That kind of statement will get me riled up.  >:( And not in the good way. LOL  ;D



Hey Tonny, it's kind of timely that you mentioned me. I was just thinking about you yesterday when I took my mom to the eye doc. (she's got age-related macular degeneration and goes every 9-12 weeks for a shot in her eye.) I keep meaning to ask you how you're feeling these days after that eye surgery. Are you still having pain where your blind eye was or has that cleared up for you?
leatherman (aka Michael)

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

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #241 on: July 18, 2024, 01:48:02 pm »



                ojo.         @leatherman, thanks for replaying, now that you mention kaletra, it was one if the three combo that saved my life and what it’s left of my vision, the ither two meds were efavirenz that I know you don’t like it and I can’t remember the name of the other med, there were big gel capsules that I have to take six if them in the morning and six at night due to the intersection with kaletra, then  the doctor switched me to lexiva because the gel capsule had too much vitamin E which it is bad for the heart. I took kaletra for five years, I had to stop it because I had three different epusodes of pancreatitis sending me to the hospital three times where I spent 15 days with no food or luquids just IV hydration. But at least it save my life, then my doctor switch me to a different combo and it felt again going back to live with aids. This was in the summer 2006 when my ID DOCTOR told me that there was nothing else he could do for me, and send me home to wait for an OI to kill me…


I’m sorry about your mom’s macular degeneration. My mother sister she had to deal with that and when she couldn’t drive or read anymore because of the loss off the central vision guess so depress and then she didn’t want to keep living, she got pneumonia and diaphragm it although she was 94 years old.… I remember that I was getting injections in my eye to prevent CMV retinitis, it was scary to see that big needle going into your eye but it didn’t hurt and I think that all those injections plus other surgeries in my eye contributed to the destruction of my cornea. But as I always said, it is what it is, I’m still alive.


The pain in my blind eye I get it once in a while, but at least it is not constant as before. I was supposed to get my bionic eye yesterday, but I didn’t have anyone to take me to Cleveland to get it done now. I had to wait until August 6. Hopefully I will have someone to take me to Cleveland to get it done. You know that Cleveland is one hour away from where I live… Thanks for asking, but I am hanging in there. I have gone through a lot that the Eye pain is not going to stop me for having a good time in Cancun next month… Hugs and good luck to your mama.



Ps. Sorry for the typos

Offline leatherman

  • Global Moderator
  • Member
  • Posts: 8,699
  • Google and HIV meds are Your Friends
Re: "HOPE DIES LAST"
« Reply #242 on: July 18, 2024, 03:23:47 pm »
I watched the needle-in-the-eye thing a couple of times and no thank you.....well, unless I really needed it. I've had a lot worse things poked into me to keep me alive and healthier.  ;D

I glad to hear that the pain is better. Hopefully with a little more time it'll be gone...hopefully in time for Cancun! ;D ;D

Big gel caps? 12 a day? I remember that. I can't remember if that was kaletra or maybe norvir. ??? I started both of those when they were in liquid form. Tablespoons and tablespoons every day. One could be mixed with juice to cover the taste. ha! sometimes I think they suggest these things without anyone trying it. Liquid norvir was ethanol based (ugh. gasoline!) and would turn apple juice all cloudy, milky. it was terrible. That's why I was so pleased when norvir became a tablet. An easy-to-swallow tablet, not one of those huge ones that was hard to gulp down.

Ah! Good Times! Lots of crappy medications at all sorts of times. And all sorts of side effects....all bad. well, except for the most important side effect - staying alive! ;D
leatherman (aka Michael)

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 Brian1966

  • Member
  • Posts: 10
Re: "HOPE DIES LAST"
« Reply #243 on: July 19, 2024, 12:41:38 pm »
@ Tonny 2

Your English is fine for me.  I've been around a lot of people who English isn't their native tongue and I'm pretty used to it.  I had my first colonoscopy in 2022, a few months prior to my hospitalization & diagnosis that November.  My doctor had me come in for a second follow up colonoscopy the following year even though there were no polyps because I have a family history of colon cancer and they didn't have a baseline on me.  In 2023 I went in for my 1-year follow up and is was again no polyps so it went back to 5-years.  I think it's just out of an abundance of caution since colon cancer can be so aggressive in some people.  I look at it as just a necessary pain in the butt.

The doctor was also able to see where the 3 inches of intestine had been removed and my intestine sewed back together when I had a pinched off hernia.  He said it looked like it healed well.

The good news is that it sounds as if your doctor cares about your well being so that's something to be thankful for.

Just got my routine labs pulled yesterday and had a followup echo-cardiogram this morning, will get my labs results on August 6 and the cardiologist will call me with the results after he evaluates it.  I hate the waiting.  My brain is my worst enemy whenever I wait for any test results.

Take care everyone. 

Offline Brian1966

  • Member
  • Posts: 10
Re: "HOPE DIES LAST"
« Reply #244 on: July 19, 2024, 12:43:11 pm »
@ Tonny2  What does "ojo" mean?
Thanks

Offline Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #245 on: July 19, 2024, 01:09:53 pm »



             ojo.                Hi Michael, I think it was called amprenavir, the dose was two capsule twice a day but I was taking Kaletra which contains  ritonavir and  intereacted with amprenavir that’s why instead of two caps I will take six twice a day…norvir luquid form , awful taste, I remember…And you are right, we still have just two choices in treading hiv , taking meds and live or worrying about what’s going to be the ling time effects of taking the meds and dying for not taking them.… I guess we, long time survivors, have been taking meds for a long time and we are still here. We will be warring when we have something to worry about. so far so good… Hugs


Ps. again, excuse my typos, trust me I’m trying my best to avoid them

Offline Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #246 on: July 19, 2024, 01:43:51 pm »



                ojo.             @Brian1966, I’m glad that everything is okay after your crazy lonoscopy and yes, you are right, my doctor wants the be proactive and that’s good…about your blood wirk results and ekg, you are going to be fine.


ojo means like “take a look” then my post but in spanish means eye…i use it as my own emoji the two circles represent my eye balls and the j my nose…hugs

Offline Brian1966

  • Member
  • Posts: 10
Re: "HOPE DIES LAST"
« Reply #247 on: Yesterday at 05:16:52 pm »
@Tonny

Thanks.  I forgot that ojos are eyes in Spanish.

The cardiologist called back yesterday afternoon and said there’s no change to my heart since the last one so I’m up to 1-year follow ups with the cardiologist and the pulmonologist.

I’m expecting the labs to be okay.

Hugs

Offline Tonny2

  • Member
  • Posts: 3,077
Re: "HOPE DIES LAST"
« Reply #248 on: Today at 11:11:27 am »



                 ojo.                 @Brian1966, I’m glad everything is ok with your ❤️ I also see a cardiologist every year, in 2010 got a stem put in my vein. And I will have another  colonoscopy next year… please keep us posted with your bloodwork results… Hugs

 


Terms of Membership for these forums
 

© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.