Author Topic: CONFUSED AND FEELIN FRUSTRATED (Read 25144 times)

Wade · « **Reply #50 on:** September 09, 2015, 10:44:12 pm »

TONY MY FRIEND ,
YOU DESERVE A RANT , YOU ARE ALWAYS THE FIRST TO OFFER SUPPORT
TO OTHERS.
I WISH THERE WAS SOMETHING I COULD DO TO HELP AND EASE YOUR
WORRY.
GIVE ME A CALL ITS EASIER THAN TYPING .....LOL

A BIG HUG , WADE

Tonny2 · « **Reply #51 on:** September 10, 2015, 08:10:29 am »

ojo Thanks my friend, you are already doing something to make me feel better, showing me your support, it is very important to me, I think, I already am starting to see better with your message, ...thanks for asking me to call you, but if I do it, you will ask me to go back and keep typing, you wouldn't be able to undestand my heavy mexican accent, hahahah...thanks again, I really appreciate it, again, congratulations and thanks for offering to help other, that shows you are a great guy...hugs ojo

Tonny2 · « **Reply #52 on:** October 27, 2015, 09:06:46 pm »

ojo Hello poz family

An update on my last blood work results...cd4 went from 578 to 414, cd4% from 26 to 24, still UD, recent blood work October 20...still, no approval for eye surgery, have to wait until,new stem cell transplantation reserdh are avialable, I need to use my own stem cells...hugs ojo

samm2015 · « **Reply #53 on:** October 27, 2015, 11:29:19 pm »

Tonny,

You have been a great support after my Dx, you are always there to offer your advice and love. I am really really sorry to hear about the hardship you have to go through. But like a fighter that you have been you will definitely definitely come out of this. We all are wishing for your quick recovery. Love.

Tonny2 · « **Reply #54 on:** October 28, 2015, 05:45:44 pm »

Quote from: samm2015 on October 27, 2015, 11:29:19 pm

Tonny,

You have been a great support after my Dx, you are always there to offer your advice and love. I am really really sorry to hear about the hardship you have to go through. But like a fighter that you have been you will definitely definitely come out of this. We all are wishing for your quick recovery. Love.

ojo Thanks for your kind words samm2015, I'm just sharing my experineces with everyone who wants to read me, and yes, it's been a long struggle living with hiv/aids, because of treatment failure since I started treatments in 95, I lived with aids for almost six years, getting lots of OIs, the worst, for me, was CMV retinitis who have left me legally blind, and some bad surgeries (eye surgery), but I will be find, I'm learning Braille, got my white cane, tho, I haven't use it yet, a friend of mine had offered me to get a companion dog for me, tho, there is a waiting list, I told her, that there are other people whom might need the dog more than me, so I told her no need it, but, again, I will be ok...keep up with the good attitude, it helps to live better with hiv, trust me...hugs ojo

PittGurl · « **Reply #55 on:** October 28, 2015, 10:19:17 pm »

Tonny2 - you've been there for me so much....please know my friend that I am praying for you and i hope you NEVER have that scare again in your life!!! Im glad the drs saw you and everything looked the same.

sphinxcat · « **Reply #56 on:** October 29, 2015, 02:59:02 pm »

Best luck Tony2! Wish you feel better!

Tonny2 · « **Reply #57 on:** March 17, 2016, 09:52:18 pm »

ojo Hello friends and members

Well,, yesterday I had two doctors appoinments, my ID plus Dracula, and a cornea specialist, yes, one more different cornea specialist, and yes, still confused and frusrated...now, the reason of my vision loss has nothing to do with my cornea, it has to do with GLAUCOMA, I've using TIMOLOL (eye drops for eye pressure) for more than four years, and still I'm having problems, so, the doctor added more eye drops (one more medication), he said to me that even if I were to have the stem cells transplantation, I still wouldn't be able to see well (although there is not a chance to have that surgery done)...so, I guess pretty soon, you guys won't see me around, unless I train my dog how to type and read to me your post, lol...it is what it is, as long as I can be on here, I will do it...I have to wait a week to know the results from Dracula, I will keep you guys and ladies posted...hugs -jo

JosephP · « **Reply #58 on:** March 17, 2016, 10:09:05 pm »

Tony... Wish you the best, mon ami!

JonJon · « **Reply #59 on:** March 17, 2016, 10:23:14 pm »

Praying for the best possible outcome for you tonny2. I always appreciate your uplifting comments and optimism and would feel lonely without you here on this board. Keep us posted.

John

Tonny2 · « **Reply #60 on:** March 18, 2016, 02:02:50 pm »

ojo Hello....thanks Joseph and Jon Jon, I will be ok and I will keep you posted ...hugs ojo

CaveyUK · « **Reply #61 on:** March 20, 2016, 09:04:06 am »

HEY TONNY - THOUGHTS ARE WITH YOU. SINCE ARRIVING AT THIS FORUM YOU HAVE BEEN ONE OF THE MOST SUPPORTIVE POSTERS ON HERE, ESPECIALLY FOR PEOPLE NEWLY DIAGNOSED, AND YOUR EXPERIENCE AND HISTORY ARE AN INSPIRATION. STILL HOPING THE RESEARCHERS FIGURE OUT SOME WAY TO MAINTAIN A DEGREE OF SIGHT - THE FORUM WOULDN'T BE THE SAME WITHOUT YOUR WISDOM

Jim Allen · « **Reply #62 on:** March 20, 2016, 09:12:19 am »

REALLY SORRY TO HEAR THAT. I AGREE WITH caveyuk, IT WOULD NOT BE THE SAME WITHOUT YOU. HOPING FOR GOOD NEWS AND TAKE IT EASY. JIM.

Tonny2 · « **Reply #63 on:** March 20, 2016, 02:52:20 pm »

ojo Hello caveyuk, thanks for your kind words, I really appreciate it
@Jim Dublin, thanks to you too, I willl be around as long as I can, thanks for the huge font size, I don't need the magnefie glass with this size of font, I appreciate your kindness and helping me keep reading...I have an ilumined and big keys, keyboard, that's why I'm still here, hoopefully, with this extra eye drops, my eye sight will stay where its now, tho, my cornea is also getting worse...anyway, it is what it is...hugs to everyone ;p ojo

leatherman · « **Reply #64 on:** March 20, 2016, 07:15:54 pm »

Sorry about the hard time you're having. Are you using any sort of software for people with reading disabilities or blindness?

http://usabilitygeek.com/10-free-screen-reader-blind-visually-impaired-users/

Tonny2 · « **Reply #65 on:** March 20, 2016, 07:32:51 pm »

Quote from: leatherman on March 20, 2016, 07:15:54 pm

Sorry about the hard time you're having. Are you using any sort of software for people with reading disabilities or blindness?

http://usabilitygeek.com/10-free-screen-reader-blind-visually-impaired-users/

ojo Hi leatherman, thanks for replying...no, the only thing I'm using is what I got here on accesibility, I checked out your linjj, and there is too much to reas, I can't, hahahhany suggestions?...I appreciate your help...hugs ojo

Tonny2 · « **Reply #66 on:** March 23, 2016, 08:03:40 pm »

ojo Hello everyone

Well, today I got my blood work results from last week visit to Dracula...after nine years of taking the same combo, my numbers are still pretty good for a LTS like me, after living with AIDS for almost six years, then, five years with numbers (cd4) around 360, then, going back down to 36 for a year, yes, I was in the AIDS level again, then, I started the so called "salvage treatment", which it's the one I'm still taking, my numbers are unbelievable...cd4=619, cd4%=29 and still UD, so guys, hang in there, good thing are coming your way, just be patient...hugs ojo

JonJon · « **Reply #67 on:** March 23, 2016, 08:36:35 pm »

TONNY
THIS IS GREAT NEWS!!! IT IS INSPIRING FOR US IN THE AIDS CATEGORY WITH LOW CD4 COUNTS LIKE MYSELF THAT THERE IS HOPE! AS I MENTIONED BEFORE, YOUR OPTIMISM IS ENCOURAGING FOR US ALL.

JOHN

Wade · « **Reply #68 on:** March 23, 2016, 08:50:42 pm »

Hey Tony ,
That's great news my friend!
We will talk that is easier than typing....lol

Hugs , Wade

aki-pk · « **Reply #69 on:** April 18, 2016, 06:24:50 am »

I am hiv +ve from Pakistan where discussion on this topic is almost nil. I am very much depressed and there is no forum to discuss issues facing due to my treatment except my doctor. I am on treatment (Efavirenz,Lamivudine &Tenofovir disoproxil fumarate 600+600+300mg) one pill per day since 30th March 2016 i.e.19days have been passed and I remained under great depression,weakness and tired all the time. I start weeping loudly and sometimes just want death instead of life. So I requested my doctor to reconsider my medicine. Now he is changing medicine from tonight. I do not know what will be the effect of new regimen. Is there anyone from pakistan to share his views. My CD4 on 17th March 2016 was 359,viral load not tested.
My brain seems foggy and I feel dizziness.Said medicine seems bad effect on brain. Can someone comment on the medicine being given to me?

Tonny2 · « **Reply #70 on:** April 18, 2016, 02:31:03 pm »

Quote from: aki-pk on April 18, 2016, 06:24:50 am

I am hiv +ve from Pakistan where discussion on this topic is almost nil. I am very much depressed and there is no forum to discuss issues facing due to my treatment except my doctor. I am on treatment (Efavirenz,Lamivudine &Tenofovir disoproxil fumarate 600+600+300mg) one pill per day since 30th March 2016 i.e.19days have been passed and I remained under great depression,weakness and tired all the time. I start weeping loudly and sometimes just want death instead of life. So I requested my doctor to reconsider my medicine. Now he is changing medicine from tonight. I do not know what will be the effect of new regimen. Is there anyone from pakistan to share his views. My CD4 on 17th March 2016 was 359,viral load not tested.
My brain seems foggy and I feel dizziness.Said medicine seems bad effect on brain. Can someone comment on the medicine being given to me?

ojo hello there....I'm sorry you are dealing with this issues...lots of people complain about thhis side effects caused by the efavirenz you are taking, I'm glad your doctor will change your combo, you will feel better....Efavirenz might not be for some people, but I think it's a good med for others who never experienced side effects as bad as yours, I took it for five years, first three or four night had vivid dreams, after that, I didn't feel anything...like I said, I'm glad your docctor will switch your combo, please let us know what he gives you...treatment can not be worse than the ellness, so, do not think in dying, there are other options...your cd4 is good...best of luck and keep us posted...hugs all the way to Pakistan ojo

PS do you want to share how you get your meds and health services in your country?

aki-pk · « **Reply #71 on:** April 22, 2016, 02:17:34 am »

Thanks tonny2 for your reply. My doctor has switched my regimen. Now I am taking (Lopinavir200mg+Ritonavir50mg) 2pills two times a day,(Avolam150mg) 2pills at night,(Tenofovir disproxil fumarate300mg) 1pill at night. Although this regimen has not so much bad effect as compared with the previous one with Efavirenz but still I am in crises. It seems as living with treatment is bad than without treatment. I am very much confused whether I should leave all such treatments and let me on the fate.What should I do?
More worst for me is that we both (wife & me) are suffering with this shit. My wife condition is very bad as compared with me.Her CD4 is less than 35. She is on Tripla (same medicine as of my previous one).Although our family is very supportive but we are creating burden on them and making their lives tough as they are trying to take care of us along with their daily routine works.My younger son is studying in school and his exams are very near.Moreover to manage daily house works are also coming tough.We have to call my sister to come to us.She is helping us but she is also old and not so healthy to manage home for a long time. What will happen? Daily I make courage and daily it breaks. It seems neither we (wife & me) living life nor die. Its not the life.Its curse. Neither I am comfortable at home nor on job. If I remained at home I face depression issues.If I come on job I feel to much tired and try to find some place to lay down on some bench or on floor.But I am trying to stick with my job to earn livings as of no other source of income.Its very terrible condition.May God bless your kindness on us!

Tonny2 · « **Reply #72 on:** April 22, 2016, 09:23:11 am »

Quote from: aki-pk on April 22, 2016, 02:17:34 am

Thanks tonny2 for your reply. My doctor has switched my regimen. Now I am taking (Lopinavir200mg+Ritonavir50mg) 2pills two times a day,(Avolam150mg) 2pills at night,(Tenofovir disproxil fumarate300mg) 1pill at night. Although this regimen has not so much bad effect as compared with the previous one with Efavirenz but still I am in crises. It seems as living with treatment is bad than without treatment. I am very much confused whether I should leave all such treatments and let me on the fate.What should I do?
More worst for me is that we both (wife & me) are suffering with this shit. My wife condition is very bad as compared with me.Her CD4 is less than 35. She is on Tripla (same medicine as of my previous one).Although our family is very supportive but we are creating burden on them and making their lives tough as they are trying to take care of us along with their daily routine works.My younger son is studying in school and his exams are very near.Moreover to manage daily house works are also coming tough.We have to call my sister to come to us.She is helping us but she is also old and not so healthy to manage home for a long time. What will happen? Daily I make courage and daily it breaks. It seems neither we (wife & me) living life nor die. Its not the life.Its curse. Neither I am comfortable at home nor on job. If I remained at home I face depression issues.If I come on job I feel to much tired and try to find some place to lay down on some bench or on floor.But I am trying to stick with my job to earn livings as of no other source of income.Its very terrible condition.May God bless your kindness on us!

ojo hello aky...I'm sorry you are feeling this way, but trust me, you do not want to stop treatment and I think you have to keep fighting, life is good even while living with hiv...your treatment is good, I took it, just give it a little time...your numbers are good, now that you are off the efavirenz, you will feel better, I'm not a doctor, but it seems to me that you are having trouble dealing with your dx, have you told your doctor about this depression?, maybe he can give you some medication to take while you get used to your new life....if you are feeling tired, try to work half day, but you need to try harder, for your wife and children, you have to be the stronger one, to pass that strengh to your wife, as you have said, she is in worse shape than you, so, please, be stronger, it will get eaiser with time, by the way, I took the treatment you are on (no tenofovir tho, I'm allergic to it), it's a good treatment, take it with food...about your family, I'm sure they don't mind helping you guy out, concentrate in getting better so you can go back to try to live a normal life, trust me, it gets better but we have to put some effort for our sake...look for psycological helpif you can't habdle your dx.

Tell me more about your wife, you said she is on ATRIPLA, how is she dealing with it, I imagine she is handling it better than you, women are stronger than men on this matters...is she taking any antibiotics to prevent OIS?, I hope she is.

Nobody said that living with hiv was going to be easy, especially right after a dx, but, with time and lots of good energy, positive energy, it will get better, and we, making some adjustment in our lives, will get used to our new life...you two are going to be able to see your children (I'm not sure if there are kids), finishing school, get married, having kids, I think that just for this reason, it is worthy it to keep fighting, I have done it, all this past 21 years, because I have a mother who is counting on me and I can't not fail her, nor to my family, who have been there for me, if I did it, you two can do it, so, be stronger for your wife, she need you now, more then ever, and your family, it is worthy...wishing you the best to both of you, forget about the rest of the people, we do have stigma in the USA too, but what it matters is us, our lives...hugs ojo

Tonny2 · « **Reply #73 on:** September 15, 2016, 08:44:29 pm »

OJO HELLO EVERYONE

WELL, STILL CONFUSED AND MORE FRUSTRATED...UPDATE

I WENT TO SEE MY CORNEA SPECIALIST TWO MONTHS AGO, HE TOLD ME THAT MY LOSS OF VISION IT MIGHT BE BECAUSE OF GLAUCOMA, I ALREADY USE TWO DIFFERENT EYE DROPS TO TREAT GLAUCOMA, MY EYE PRESURE IS GOOD, LAST READING 17...HE REFERRED ME TO A GLAUCOMA SPECIALIST, THIS SPECIALIST TOLD ME THAT HE DOESN'T KNOW IF IT IS GLAUCOMA OR SO MANY SURGERIES I'VE HAD IN THE PAST, BUT GAVE ONE MORE EYE DROP TO REDUCE STILL MORE MY EYE PRESSURE, GRR!!!...SO, I'M STILL CONFUSED, AM I GOING TO NEED A STEM CELL TRANSPLANTATION FOR MY CORNEA, OR I'M DOOM TO BECOME COMPLETLY BLIND DUE TO GLAUCOMA (GLAUCOMA KILLS YOUR OPTIC NERVE, MAKING YOU COMPLETLY BLIND, IF IT IS MY CORNEA, I WILL STILL SEE LIGHTS, WHICH I PREFERE...ANYWAY, WILL SEE, I FRIEND OF MINE WANTS TO GET ME A GUIDE DOG, STILL I KEEP TELLING HER THAT THERE ARE MORE PEOPLE NEEDING A DOG WHO MIGHT GET MORE USE OF IT THAN ME (THERE IS A WAIT LIST TO GET A DOG)...OK, THAT'S THE NEWS, I'LL WAIT TO "SEE" WHAT HAPPENS...HUGS TO ALL OF YOU...TAKE CARE OF YOUR EYES ...ALTHOUGH, LIFE IS STILL GOOD, EVEN WITH MY HEADLIGHTS (EYES) BURNED OUT ;P OJO

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Author Topic: CONFUSED AND FEELIN FRUSTRATED (Read 25144 times)