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Author Topic: "HOPE DIES LAST"  (Read 65401 times)

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Offline Kirat

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Re: "HOPE DIES LAST"
« Reply #150 on: September 03, 2023, 12:39:30 am »






             ojo.              Hello, everyone!!



Yesterday, while eating my salad, I realized how blind I am, because I couldn’t see what I was eating, to tell you the truth, I felt scared. Well, I’m not sure if that was the right sensation bath, I felt concerned and worried about what am I going to do with my vision gets worse.


If you had read my thread, you know that when I got my cat, my DX, I wasn’t that worried, when I asked the doctor how much longer I would live, and he told me around two years, it was Dan went I felt like yesterday. I was in bed for four or five days until I realized that I was already. wasting some days off those two years that I was supposed to live so I got out of bed, took a shower and called the office to let them know that I was going to be in the office the next day to go back to work. Now it’s different , I think, I guess I will have to start looking for some help and how to live with my blindness. I know that I’m going to be OK but still, a hug will be appreciated…

 Your story is inspiring and you are a true warrior. Omg, what you've been through! You are admirable, my friend!
I'm sorry about your vision and I hope you can manage it the best way as possible. Thank you for sharing your story and give us hope!
Switched meds again on 21/21/2023 because I had no changes with the new meds. Now, taking Dolutegravir + Lamivudine only, the dual therapy.
11/01/2023 VL : U                       CD4 452 - 21.52%
Switched meds on 10/26/2023: Darunavir + RTV + TDF/3TC ( 3 pills).
08/10/2023 VL : U                      CD4: 397 - 23.22%
06/20/2023 VL : U                      CD4: 422 - 20.73%
01/17/2023 VL : 1430/mL           CD4: 300 - 10.45%
Started Dolutegravir + Tenofovir/Lamivudine

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #151 on: September 03, 2023, 02:03:13 pm »






            ojo.            Thanks for reading and replying and yes, I’ve had the “fortune” to deal with so much that it has made me stronge, back then, either you wanted to live or die, I chose the latter and, I’m still fighting, fighting all my vision.

Last week I saw the cornea specialist and scraped some calcification on my cornea, very painful, now I am still having problems to see, that we are doing what we had to do. Next visit with a specialist will be next Wednesday, hopefully there’s not an abrasion therefore, an infection after the procedure he did last week… I will keep you posted… life goes on with vision or not vision I just had to adjust to whatever day comes…hugs

Ps. Forgive my typos.

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #152 on: September 07, 2023, 04:04:29 pm »





            ojo.        Hello there!… well, I saw the cornea specialist yesterday, and there is no god news, we have tried everything and it hasn’t worked. I’m still having problems, I see everything foggy. We do no one to go to an aggressive treatment of a cornea transplation cause that would mean taking antirejection medication which neither the cornea specialist, nor my infectious disease doctor recommend. So I guess, after 29 years. A fighting dish condition and 13 years trying not to go blind I guess there’nothing else to do. wwell, it is what it is. I will continue here using my cell phone to communicate with you…hugs
..

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #153 on: September 08, 2023, 09:37:49 pm »





           ojo.             Well, it was a long day. My best ggest supporter during these last 29 years fighting this condition had a surgical procedure, my mother, and everything went well. Plus, it was my sister last chemo therapy treatment. it is time to relax for three weeks before her radiation treatment. So far so good. I guess it is part of living with HIV, we are not just the protagonist of our family stories, we also have to deal with our families and friends health issues…hugs

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #154 on: October 29, 2023, 05:58:13 pm »






             ojo              Hello everyone!!….well, I’m having a dilema and it makes me think about Miss Philicia, R.I.P., I remember he did not want the be a burden for his family and I think that i’ve gotten to that point of
No, wanting to be a burden, but anyone so I have to start looking for solutions. Any suggestions?. Being legal lying makes my living conditions a bit difficult, are you ready? Had someone from the BLIND community to teach me how to be more independent but still, I do not feel safe cooking for myself. Well, I will appreciate any feedback if you know of somebody with the same condition…hugs

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #155 on: November 02, 2023, 08:25:36 am »



          ojo.          Hello everyone!… just ranting. How difficult is to know that a relative is suffering and waiting for the end. My cousin has terminal cancer and she started hospice care. I remember that my ex when we found out that I was living with AIDS

And, according to my doctor, then, I was supposed to leave for two more years after my diagnosis, my ex told me that I will outlived everybody. I guess he was right because I’m still here and so many loved ones have passed away before me… I feel weird, I still think why I’m still here while my cussing is waiting
to died…
Have anyone felt this way?…hugs

Offline leatherman

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Re: "HOPE DIES LAST"
« Reply #156 on: November 02, 2023, 11:49:15 am »
Survivor's guilt can be a hard thing to deal with sometimes. It can strike at any time, sometimes over little things and sometimes bigger things; but that's not surprising as it's all about death - the death of others and not ourselves.

Every once in a while I think about my classmates from my old baptist high school. Out of a graduating class of a paltry 43 people, 5 have already passed away. For a while in the late 90s, I was sure I was going to be the first of my classmates to die - but I didn't. Now I sit here, and except for the one who was killed by her ex, I wonder how those other 4 could be gone when I've been the one living with a deadly disease.

How to cope with this odd feeling of not being dead while others are?
...Allow yourself to feel your feelings. Try to work through them and process them. Others being gone while we're still here is not something we control. People dying is just how life is.
...Exercise mindfulness. Focus on positive truths about yourself and the life you lead.
...Don’t isolate from others. Staying connected with people can be the support to help you through your struggle. Sharing grief can be cathartic.
...Do something good. Putting good out into the world can help. Give your time to a local organization that helps people in your community, and you will feel better about yourself while making a difference in the lives of others.
...Seek professional help. A therapist can help when mental health challenges are too much to deal with on your own.

Of course, you and I (and several others we know) as long term survivors have to deal with this kind of issue a lot. Too, too many of our peer group (gay men of the 80s and 90s) are gone leaving us here to wonder how we are the ones surviving. For me, I think I survived by luck, timing (by not being infected 6 months earlier), and determination to see the next morning.

hugs!!
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

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Re: "HOPE DIES LAST"
« Reply #157 on: November 02, 2023, 02:50:40 pm »




         ojo.            Hi Leatherman, thanks for reading me. it doesn’t get to that point of needing professional help. It’s just that I grew up with my cousin and I feel so bad for her although she has been pretty strong and has a good attitude even though she knows that her days are counted. also, my sister is fighting her bottle too with cancer, so far so good, she tolerated the Kimia treatment and now she sang her second week of radiation treatment. Aside up all these problems, my brother just found out that he has prostate cancer, he seems that we are, as family, having to deal with so much. Thankfully, we are a strong, family and very supportive of each other … again, thanks for reading, and the good tips…hugs

Offline leatherman

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Re: "HOPE DIES LAST"
« Reply #158 on: November 02, 2023, 06:53:29 pm »
So sorry to hear how many people in your family are having to deal with cancer. Hopefully, even with so many people dealing with their own illnesses, your family can give each other the support you all need to get through these tough times.  :-*

hugs to you and your family!!
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

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Re: "HOPE DIES LAST"
« Reply #159 on: November 04, 2023, 12:49:47 pm »



          ojo.            @ Leatherman. Thanks again for replying, and we had to do what we had to do, fortunately, we have each other. My oldest brother died of colon cancer 10 years ago since then, we had to be checked, and now, with my brothers prostate
 Cancer diagnosis, we have to be careful and check periodically. So far the rest of us are doing good. Thanks again for the hugs sometimes, even virtually, shows the kind of person you are, and I appreciate it. Gracias.

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #160 on: November 09, 2023, 02:14:41 pm »



          ojo.           
Hello everyone!!… he was time to visit Dracula and my ID, DOCTOR, vital load, still undetectable, after 16 years of taking same treatment (eight pills a day), CD4, 758 and  cd4% 34. I also, so my cornea specialist just to replace my contact lens because I sit before, there is nothing else we can do about my cornea. Fortunately, there is no infection or inflammation, so far so good.
Thanks for reading…hugs

Offline BubbaPat

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Re: "HOPE DIES LAST"
« Reply #161 on: November 14, 2023, 03:23:30 pm »
Hugs Tonny!!

You're in my thoughts, prayers, good energies and well wishes every day.

I believe I can actually hear and see your smile when you write.  I know you get down sometimes but you find a way to be hopeful and give good energy to the universe.

I send you the biggest bubba hugs i can.

Stay healthy and with us kiddo.  You brighten a person's day no matter where you are.

Bubba hugs! Patrick
Bubba hugs!

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #162 on: November 29, 2023, 07:27:50 am »



         ojo.             @bubbapat, my favorite guy, you always made me smile. thanks for reading me and for your kind words, but I am OK specially, reading messages like years… hugs Francis sunshine tonny2.


Hello everybody!!…. happy 29th HIVersary to me. Yes, one more year since my diagnosis aids. Even tho I am almost blind, life is still good…hugs

Offline leatherman

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Re: "HOPE DIES LAST"
« Reply #163 on: November 29, 2023, 03:43:19 pm »
happy 29th HIVersary to me
Congratulations!
Heaven know you've lived through enough to deserve the congratulations for surviving and still being here....even though age, time, health, genetics and HIV have tried to stop you. :D Congratulations on your bravery and stamina!
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

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Re: "HOPE DIES LAST"
« Reply #164 on: December 02, 2023, 03:56:12 pm »



        ojo.             @ Leatherman., thanks for replying and yes, you are right, he’s been difficult to deal with so many illnesses and conditions related to HIV/aids. I remember that I started with PCP, Mac, retinal detachments due to CMV, crypto, PCP again, neuropathy, vasculitis,DILS, hemolytic, anemia, awful reaction to abacavir, CMV retinitis which left me legally blind but, we are still here after 29 years fighting every day. It is what it is come, life goes on, there are people in worse conditions than me, and they are still fighting to survive… thanks again for reading me, and taking the time to reply…hugs

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #165 on: December 14, 2023, 11:44:01 am »



           ojo.        Hello all!!…I was wondering if someone one on here, specially LTS, although I just necessary Mente them, has problems like me, low vision, drop foot due to neuropathy. I would like to know how you deal with this problems… feedback would be appreciate it…thanks.

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #166 on: December 15, 2023, 02:15:44 pm »



         pjo.              Hello everyone.!… I forgot to mention that another condition that I have due to the use of prednisone is a vascular necrosis. There are some doctors, well, in my case, a doctor gave me an antibiotic for pneumonia, but also gave me prednisone. I asked my infectious disease doctor about the prednisone and he told me why, I was prescribed it, he told me to not take it. I used prednisolone when I got hemolitic anemia. So I guess there are times that you have to use it… watch out!

         https://www.mayoclinic.org/diseases-conditions/avascular-necrosis/symptoms-causes/syc-20369859

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #167 on: December 23, 2023, 06:04:26 pm »



           ojo.         Hello everyone!… just to wish you a merry Christmas for those who celebrate it and happy holidays… remember that now HIV is considered a chronic condition and as long as you take your medication as prescribed, we will be celebrating with our loved ones many holidays…hugs


Ps. remember, if you go partying, don’t forget the balloon, because even though we know that and detectable equals transmissible, the anti retrovirus protwon’t protect you from other STIs.

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #168 on: December 31, 2023, 08:44:21 am »



           ojo.            Hi all!…. we started the year 2023 with bad news, the breast cancer, diagnosis of my sister, so far so good, Dan, another cancer, diagnosis in the family, my brothers prostate cancer, so far, DOCTOR says no need to do anything for now, he says that everything is gonna be fine and that he’s going to live and normal life, but they are going to be checking him periodically. In my case, no more treatment for my cornea so my vision will get worse with time. But we are still here and hopefully next year finally, I will get my blind eye removed because it has gotten so painful to live with it.

I wish everybody a happy and healthy new year. Life goes on, there’s life after an HIV diagnosis…. Hugs

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #169 on: January 15, 2024, 01:06:40 pm »



         ojo.         Happy new year to all of you!!

I don’t know about you but, leaving with HIV/AIDS, gives us the benefit to be checked for  other illnesses and health conditions, I guess that’s a good thing. I’m telling you this because my best friend from college died yesterday. He didn’t know that he had cirrhosis and was too late and he lost the bottle can stay this. May he rest in peace… again, I don’t understand why I’m still here even though hi lived with zero cd4 for so long and he made me sad seeing my loved ones dying before me. Sorry for the rant…
hugs


Ps he was my platonic love for four years. We were in love, but we never decided to confessed to each other for being afraid to the stigma

Offline leatherman

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Re: "HOPE DIES LAST"
« Reply #170 on: January 15, 2024, 08:09:04 pm »
again, I don’t understand why I’m still here even though hi lived with zero cd4 for so long and he made me sad seeing my loved ones dying before me. Sorry for the rant…
That's not a rant. :) That's just your truth....and the truth of a lot of long term survivors.

You know I can understand my two partners and numerous friends who had HIV in the old days dying before me. Having AIDS sucked and a lot of us didn't make it. What gets me is the "other people" who have died. Old classmates from the 70s, friends without HIV, friends much younger than I. What the hell is up with that?!? Then there are the people who haven't lived as long as me with HIV who have died. I mean, I didn't do anything special to stay alive, why aren't they? It just makes me feel extra or doubly sad losing these people who really should have "outlived" me.
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 Jim Allen

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Re: "HOPE DIES LAST"
« Reply #171 on: January 16, 2024, 02:55:43 am »
@Tonny2 Sorry to hear that your friend passed away. Hugs.
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Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #172 on: January 16, 2024, 01:32:03 pm »



          ojo.          @ Leatherman and Jim Allan.. thank you for reading me and understanding how I feel. Here is when you notice that when you need peer support, he reflected, and you replies… as you set the Leatherman, it is difficult to understand why we are the lucky ones in still be here. When back in the days we used to make plans for our funeral, and I even remember that the insurance company would buy back your life insurance if you were to leave us a more months,, are there people will max up their credit cards for the last vacations. It was sad. In my case, when my doctor told me that I would leave two more years, I just decided to keep working, and I think that working hard kept me alive . .. again, thanks for reading me guys you two are the best people on this forum because you had always concerned about the members of these sites (Jim on the spanish forum)…hugs

Offline leatherman

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Re: "HOPE DIES LAST"
« Reply #173 on: January 17, 2024, 03:11:16 pm »
I think that working hard kept me alive
for me, it was my dogs. :-* All seven of them!  ;D
Now it's for my 2 doggos and hubby.  :-* :-* :-*
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

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Re: "HOPE DIES LAST"
« Reply #174 on: January 17, 2024, 04:54:36 pm »
for me, it was my dogs. :-* All seven of them!  ;D
Now it's for my 2 doggos and hubby.  :-* :-* :-*


                ojo.            It is ytue, when I was in the hospital. Well, all the times that I was in the hospital, there were so many that I can even remember, I always missed my dog. And every time when I came back from the hospital, he would be so excited to see me, as a matter of fact, last time that I went to the hospital because of the Himalia anemia, my dog was telling me that there was something wrong with me. I would be watching TV and he would be, jumping on my lap, something that he would never do, how we put him down and then he would jump again on my lap. Two days later I was in the hospital where I got a heart attack for the lack of blood in my body due to death  anemia. Now I had to dogs and thankfully, none has let me know that something is wrong…hugs

Hemolitic anemia*

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #175 on: January 25, 2024, 09:51:50 pm »



          Ojo.             Hi everyone!!… I just read my first post on this thread, and I realized that it has more than 60,000 views maybe because it’s front 2017. I hope that reading my thread I have given some hope to those who have visited my thread. Even though, I said on my first post that I have a 🦊🐾SAUL treatment in 2007 my sturdy didn’t start then, even though in 1996 we started it to get HAART, life-saving treatments, all the medication’s didn’t work for me until 2000 when I started taking Kaletra, sustiva and one more that i dont recall its name (maybe an oldtimer can help remember the name, big gel capsules that i had to take six in the morning and six at night because intereacted con kaletra), this treatment saved my life and vision, I was dealing with an infection of CMV retinitis that stole must on my vision. I had zero CD4 when I started this treatment and my CD4 level went up to 360. Thankfully I didn’t get Iris. This treatment worked for me for five years, I had to stop it because I got three different episodes of pancreatitis and treatment dating help to suppress the virus. The rest my story is at the beginning of this thread… I was infected around October 1986 after I got a blood transition in the hospital where I was treated after a bad traffic accident. obviously nobody knew that I was getting blood infected with HIV. Two or three weeks after my accident while watching TV in my house, I her on the news that the hospital where I was treated after my accident they were asking people who got the transmission in there to get check for HIV. When I heard that I felt sick to my stomach but I was feeling well and healthy so I put that in the back of my brain and never thought about it until November 1994 when I was diagnosed with aids with only  2p cd4… one thing. Interesting that happened to me that after 20 years, by then, I was sleeping here in the USA, all of a sudden I started to remember lots of things that happened during my accident. It is incredible how your mind protects you from trauma, or was the contusion I got…. anyway, it is sweat. It is, HIV is HIV doesn’t matter how you acquired, we had to keep looking forward, because there is life after an HIV diagnosis, there are a lot of people here who are proof for that…. sorry for the long post…hugs


Ps. i’m sorry for the typos and I hope you guys can understand my post.

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #176 on: February 01, 2024, 08:38:01 pm »



            ojo.            Hello everyone!!… the last couple of days I’ve had awful headache pain due to my blind eye. I know that I’ve been talking about removing my blind eye for a while, but I’m really afraid of surgery because I have had problems with bad surgeries before, as matter fact, my blind eye is result of a bad surgery. My left eye, I have cornea problems because of another bad surgery. The first surgery for a piece of mine. I want to consider it a surgery risk but, the second one the surgeon, a crooked DOCTOR Tried to cover his mistakes by lying to me. So now I just wonder what can happen next even though I go to a very repeatable clinic. Obviously, I will look for a different surgeon but the clinic is an educational institution sometimes the surgeon let the residence to the surgery for them, even though I have asked the last surgeon to do the surgery with himself, but he didn’t listen to me… but definitely I had to get this eyes removed because is the reason on my headaches… anybody with same experience, bad experience with surgeries?… sorry for venting.


Ps. please forgive my typos.

Offline BubbaPat

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Re: "HOPE DIES LAST"
« Reply #177 on: February 05, 2024, 04:51:09 pm »
Sweet man... NEVER apologize for venting. Never.  Most everyone who has chatted with you has benefitted from your experience and your ability to find the sunshine on a cloudy day.
If it's a new doctor, tell them your concerns and why.  You don't have to throw anyone under the bus, just tell them you don't want to feel swindled again.
If that doesn't work.. let them know you are friends with a Texan.  While that alone should be enough to scare any sane person in the world, simply because we have bad reps as being nut jobs with guns, also.. it's mostly true.  Most of us don't have a sensible brain and if we don't own guns, we have access to guns.
Tell them your friend Bubba Patrick wants you taken care of.

And at my age, I have acquired who friends who owe me favors with no questions asked.  Plus they all know I don't ask favors for others unless they are truly worth it and Sunshine... you are worth it.

Talk to them and get better.  Lot's of us still need you around and the new folks on here need you to, they just may not know it yet.

Bubba hugs kiddo!!!
Bubba hugs!

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #178 on: February 05, 2024, 08:22:29 pm »



          ojo.         @bubbaPat, you are my favorite member of these forums and you are the sweetest guy even though you have your own problems, you always put a smile on my face and come night now even made me cry… thanks for replying, and you’re good vibes. No being able to drive. It makes my life more difficult specially, when I had to go and see the specialist which he is an hour away from where I live. And I had to depend on my cousin to take me there. I think that I had decided to have a surgery here in town where I live, so I don’t have to go to Cleveland to the preoperative then to the surgery, then, the next day to the postoperative, then, one week later, for check up, it is just too much traveling , any cost me a lot of money, because gas and I treat my cousin to dinner, etc., etc…. besides side of the surgery here, the doctor, we do the surgery and no a resident like in the Cleveland Clinic, which is an educational clinic. Anyway, my friend really appreciate your reply. You are so funny, I am Mexican and he seems like my doctors don’t care about the Mexican mafia. Maybe I will follow your advice, and I will tell them about my Texan friend. Do not mess with my  bubbaPat  buddy… thanks for being there when I need a hug….tonny2 hugs to you


Ps. sorry for the typos.

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #179 on: February 15, 2024, 05:38:50 pm »



          ojo.          Hello everyone!!


I was sent yesterday to see the vampire, Dracula, to check my vitamin D levels, and the doctor said to check everything as well even though my last visit  to Dracula was in the first week of November. Usually I get to see Dracula every six months but, anyway Very results are back :UD, soldiers 785,% 39… vitamin D is low even though I am taking a supplement, so I have to wait for the doctor to tell me what to do about it… impressive numbers for someone who has been living with HIV/AIDS for 29 years and a lucky one to be alive after have been sent home to die in the middle of 2006… life is even with an HIV diagnosis, legally blind, and with pain, 24/7… keep strong, keep living…hugs

Offline Tonny2

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Re: "HOPE DIES LAST"
« Reply #180 on: February 21, 2024, 02:28:31 pm »



           ojo.         Hello everyone!… well, finally I’ve decided to have my surgery. Maybe it will be scheduled for next month because I would be leaving for Texas next week and coming back March 13 so after my trip I’m going to schedule the surgery because my pain has become unbearable. Here is a video, up to surgery that I will go through.… hugs


https://youtu.be/zreZaJyne7c?si=XH_Wg61gumpkzWEx

 


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