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Author Topic: CONFUSED AND FEELIN FRUSTRATED  (Read 1791 times)

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Offline Tonny2

  • Member
  • Posts: 698
CONFUSED AND FEELIN FRUSTRATED
« on: December 15, 2014, 08:37:33 PM »


     OJO    hI FAMILY POZ

 I just saw a cornea specialist here in my hometown (for a third opinion), he said that even if I were to have a cornea transplantation, I won't be able to see well anyway, I'm trying to talk to someone in the Eye institue in Baltimoe and Miami, but they want me to go and seem them, without even telling me if they do the procedure I need, I can not afford just going there for them to tell me, "I'm sorry, we do't  do that procedure here", grrrrr...we'll see what happens...well, tomorrow, I will see my ID doctor and the vampire, wish me luck family, I really need to get good news, because the situation with my eyes is getting into me...ah, no more antidepressant for me...hugs           ojo

Offline initforlife

  • Member
  • Posts: 624
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #1 on: December 15, 2014, 08:57:35 PM »
Hugs Tonny2  I hope all goes well tomorrow and that you find out some good news on your eyes!
sometimes it is best to say nothing at all. then to offend

Offline Tonny2

  • Member
  • Posts: 698
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #2 on: December 15, 2014, 10:51:51 PM »
Hugs Tonny2  I hope all goes well tomorrow and that you find out some good news on your eyes!
[/q
uote]

            ojo       Hola initforlife...thanks for reading and replying...I hope and my numbers stay at least the same...I will keep you posted, tho, I will know the results in one weel, by then I will be in Mexico, poor me, lol on vacations...thanks again...hugs     ojo

Offline stuka

  • Member
  • Posts: 60
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #3 on: December 16, 2014, 12:00:27 AM »
tonny, this sounds unusual ... why can't they schedule a call before you go down there? I hope your numbers are good ... man, I know your eye has been causing you a lot of grief lately, i just wish they can fix it so we don't have to see our buddy so depressed.

Offline Tonny2

  • Member
  • Posts: 698
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #4 on: December 16, 2014, 07:35:11 AM »
tonny, this sounds unusual ... why can't they schedule a call before you go down there? I hope your numbers are good ... man, I know your eye has been causing you a lot of grief lately, i just wish they can fix it so we don't have to see our buddy so depressed.
[/quot   

         ojo       Hi stuka,...I don't understan why this people (Baltimor, Miami) don't let me talk to the specialist staff, so they can let me know all I need to know, before setting the appoinment...I supposed they just don't want to deal with other stuff....anyway, I will keep giving them them hard time, lol...thanks buddy, I hope to get good numbers too and hope my meds are still kicking HIV's butt, it's been seven years already, with same combo and UD.....hugs, lot of them...did you read?, I followed your advicen no more anti-depressant for me, I'm doing fine          ojo 

Offline 2tcells

  • Member
  • Posts: 154
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #5 on: December 16, 2014, 03:58:38 PM »
a friend of mine got this done to his eye 2 times because the first cornea his body rejected. he still cant see good from that eye. before getting it done he could just see light and dark, now he can see blurry colors and has to wear dark glasses in the sun. he is not poz. it didn't fix the pain in his eye either so I don't know how much better that is than before
7-4-13 diagnosed   cd4- 2      vl-220,600
8-3-13                     cd4- 4      vl- 448
9-3-13                     cd4- 40    vl- ud
11-3-13                   cd4- 54    vl-ud
1-9-14                     cd4- 62    vl- 43
4-3-14                     cd4- 110  vl-ud yay!
8-5-14                     cd4- 95    vl-ud boo
9-23-14                   cd4- 97    vl-ud
1-22-15                   cd4- 156  vl-ud
4-14-15                   cd4- 122  vl-ud

Offline Jeff G

  • Member
  • Posts: 14,625
  • How am I doing Beren ?
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #6 on: December 16, 2014, 04:39:06 PM »
Hi Tonny … once again I have little to offer you except to let you know I am thinking about you and wish along with you that you may regain your sight one day .

Offline lifejourney

  • Member
  • Posts: 46
  • Well travelled Australian 43yo
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #7 on: December 16, 2014, 07:07:25 PM »
Hi there Tonny2,

I'm giving you a big virtual bear hug.  I wish you all the luck in the world getting your eye sorted out quickly and effectively.

I want you to know how much I appreciate you being one the first to reach out to me on my "Just Diagnosed" post.  You read my pages of self absorbed ramblings despite the difficulty with your eye.  You're my hero!

xoxo

LJ
10.14   Infected
11.14   VL 3.6M
12.14   VL 1.6M  CD4 948 26%  Started: Truvada 200, Norvir 100, Prezista 500
12.14   VL 5.8K  CD4 922  44%  Switched to: Stibild
01.15   VL 146  CD4 1026  42%
01.15   VL 38
02.15   VL 144
02.15   VL <20   Phew!!!!

Offline Tonny2

  • Member
  • Posts: 698
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #8 on: December 16, 2014, 08:05:49 PM »


      ojo     @2tcells...thanks buddy for the info, but it's so confusing when a doctor tells you something and others tell a different story, that's why I get frustrated...but I will keep fightting, let's "see" who gets tired first, I'm almost blind, but I can still talk....hey buddy, I saw my doc today, I will let you know my bloodwork result in one weel, tho, I will be suffering with the nice weather of Mexico, laying by the beach and having a beer, I don't want to know anything else about doctors until I come back from my vacations...thanks for replying and you know that you are always on my mind....hugs                    ojo

    ojo    @Jeff, thanks Jeff, you are my favorite guy in here, always supportive and helpful...I really apprecite you always replying, it means a lot to me...hugs

     ojo   lifejourney...oh mzn, you mzde me cry, thanks for your kind words, just trying to share my experineces and try to support you all...I wish English were my first language to espress better my feelings, but I guess, even with my poor skills (English) you get what I'm trying to say....thanks again, and you can consider me your friend and I'll be here if you need a cyber hug.......ojo

Offline bubba53

  • Member
  • Posts: 489
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #9 on: December 28, 2014, 01:58:29 PM »
Hi Tony,
I just saw this, sorry your eye issue is no closer to getting resolved.
I have very poor vision out of my transplanted cornea, but no pain or
sensitivity to light anymore. Corrective lens are strong and hard to get used to
but they do help.

I don't understand why they are telling you this. Took me about three years
to finally get mine. keep on pushing for treatment and answers ! PM me again if you like. Good luck with the vampire !

Be Well My Friend, Wade
"Who put the pepper in the....Vaseline  ? " Coffee Butler

Offline Tonny2

  • Member
  • Posts: 698
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #10 on: December 28, 2014, 03:32:49 PM »
Hi Tony,
I just saw this, sorry your eye issue is no closer to getting resolved.
I have very poor vision out of my transplanted cornea, but no pain or
sensitivity to light anymore. Corrective lens are strong and hard to get used to
but they do help.

I don't understand why they are telling you this. Took me about three years
to finally get mine. keep on pushing for treatment and answers ! PM me again if you like. Good luck with the vampire !

Be Well My Friend, Wade

        ojo      Hi buddy, thanks a lot for reading me and advicing me....like I said, it is frustrating, every doctor confuses me, have different opinions...my cornea specialist retired, so now I have to see a new one which I don't like the guy, too many patients poor quality of service...but I promise you, I will keep fightting and looking for help...I really appreciate tour concerns and help....hugs   ojo

René

Offline Tonny2

  • Member
  • Posts: 698
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #11 on: January 10, 2015, 02:13:50 PM »


     ojo    Hi everyone, Happy new year to all!!!...after suffering for 21 days in Mexico, finally came back home (Ohio), and I got my blood work results from my visit to Dracula the 16 of December...my soldiers are still kicking ass 498 down from 538, and my VL still undetectable..next January 15, will be exactly eight years, since I started this treatment, which saved my life because my doctor told me there was nothing else I could take then (2006), so, I'm still here thanks to PREZISTA/NORVIR, INTELENCE AND ISENTRESS, isn't it great?...about my cornea problems, still in limbo, I will keep looking for help, thankfully, my vision hasn't changed...about my pains, ouch!!!, I don't know what to do anymore, maybe I will try the procedure, OMG!!, I keep forgetting the name of it, Miss Phil help!!!....hugs     ojo

Offline Fisher

  • Member
  • Posts: 290
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #12 on: January 11, 2015, 04:20:56 PM »
Big bear hug for you...
- fisher
01/15 CD 468 %24 VL<20
09/14 CD 385 %22 VL<20
07/14 CD 391 %20 VLUD
04/14 CD 486 %23 VL<20
11/13 CD 351 %21  VL<20
10/13 CD 390 %16  VL<20
06/13 CD 315 %19  VL 22
02/13 CD 396 %14  VL<20
12/12 CD 392 %13  VL320
11/12 CD 428 %13  VL1200
*Started Meds: Atripla
10/12 CD 427 %11  VL 139000 -- 09/12 CD 408 %13 VL 92928
09/11 CD 745 %27 VL CLOT -- 10/10 CD 863 %29 VL 2782
10/09 CD 597 %30 VL 2537 -- 05/08 CD 809 %28 VL 1504
04/07 CD 797 %25 VL 3558 -- 11/06 CD 720 %28 VL 1214
06/05 CD 731 %25 VL 1575 -- 12/04 CD 1176 %30 VL 1329
01/04 CD 959 %26 VL 1011 -- 11/03 CD 1000 %28 VL 1581
12/02 CD 748 %28 -- 10/01 CD 860 %25
08/00 CD 1022 %28 -- 04/99 CD 854 %27
11/98 CD 899 %28 -- 02/97 CD 1400 %37
11/96 CD 1325  VL <500 -- 09/96 – Western Blot
05/83 – 04/98 - Mon - Part ARS - LA '8

Offline Tonny2

  • Member
  • Posts: 698
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #13 on: January 11, 2015, 08:10:30 PM »


      ojo    thanks Fisher...a big hug on your way too      ojo

Offline DANIELtakashi

  • Member
  • Posts: 351
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #14 on: January 21, 2015, 05:41:40 AM »
I am taking this opportunity to thank you for your constant help.
Arigato .
Japanese National.
Language:  Japanese and English
Reside in TOKYO
Have visited 45 US states, DC, and Guam and Saipan.

Offline Tonny2

  • Member
  • Posts: 698
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #15 on: Yesterday at 10:41:03 AM »


      ojo      Hello everyone....uptade about my eye problems...I went to see a specialist (retina) for a third opinion, about the reasons of my awful eye pain (right eye, blind)...he told me:
1.- It might be imflamation, increase eye drops from twice a day, to four times a day.
2.- if the eye drops don't work, he can try killing the nerve with alcohol injections (alcohol block), never heard about, have to reaserch it
3.- I will have to remove my blind eye
I think, eventually, I will have to get rid of my blind eye, because it is already getting smaller, the doctor said, that it will shrink until it will be completly shut, I just hope the pain stops, it's driving me crazy (fortunally, the pain it is not that often).
My cornea of my left eye, it is getting worse, my ID doctor still does not want me to have the stem cell transplantation surgery, the immuno-suppressant treatment, to harsh for the rest of my body (organs), grrrr
The good news, my recent number have not changed, cd4=578, cd4%=26, VL=UD after eight years taking the same treatment, these are great news, because I'm resistance to every med on the market.
Hoping you all are doing great.....hugs             ojo

PS, my parrot is getting old!!!....bear with me, English is my second language

Offline DANIELtakashi

  • Member
  • Posts: 351
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #16 on: Yesterday at 10:58:32 AM »
Hi,
Thank you for your message.
Sorry l did not leave my message in my PCP thread-l was in a hurry trying to reach Andy  and Joe.
I hope you are ok.
Japanese National.
Language:  Japanese and English
Reside in TOKYO
Have visited 45 US states, DC, and Guam and Saipan.

Online Joe K

  • Global Moderator
  • Member
  • Posts: 4,827
  • 31 Years Poz
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #17 on: Yesterday at 02:30:00 PM »
HEY TONNY,

I HOPE YOU FIND SOME RELIEF FOR YOUR EYESIGHT ISSUES, AS CONSTANT PAIN CAN EAT AT YOUR VERY BEING.  THAT BEING SAID, I HAVE THE GREATEST RESPECT FOR YOUR ATTITUDE AND DETERMINATION IN RESOLVING YOUR ISSUES, WHILE REMAINING AN INCREDIBLE PERSON.  I HAVE EXPERIENCED PERIODS OF INTENSE PAIN AND I KNOW HOW THAT CAN WEAR YOU DOWN.  SOMEHOW, YOU NOT ONLY LIVE WITH YOUR STRUGGLES, BUT YOU RADIATE A REAL SENSE OF SELF CONTROL AND EMPATHY FOR OTHERS.

IT IS A TRAIT THAT WILL SERVE YOU WELL IN LIFE AND ONE WHICH I ADMIRE YOU FOR MAINTAINING, GIVEN YOUR CHALLENGES.

JOE

MODIFIED SO TONNY CAN ACTUALLY READ WHAT I WROTE.


« Last Edit: Yesterday at 06:32:17 PM by Joe K »

Offline Tonny2

  • Member
  • Posts: 698
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #18 on: Yesterday at 05:18:15 PM »
Hey Tonny,

I hope you find some relief for your eyesight issues, as constant pain can eat at your very being.  That being said, I have the greatest respect for your attitude and determination in resolving your issues, while remaining an incredible person.  I have experienced periods of intense pain and I know how that can wear you down.  Somehow, you not only live with your struggles, but you radiate a real sense of self control and empathy for others.

That is a trait that will serve you well in life and one which I admire you for maintaining, given your challenges.

Joe

      ojo      Thanks Joe, you are so kind...you are right about what pain can do to you, but, after living with pain for so long, you get used to deal with it, tho, sometimes I wish I could shoot myself, but I can't, because the only pistol I have, its my hair dryer (in Spanish its called pistol, gun of air), lol...I take norco when my pain is too bad, it helps a little, but I try to keep my mind busy in here, sharing experiences, it works for me,...again, thanks for your kind words, life goes on with or without pain...hugs             ojo

Offline Jeff G

  • Member
  • Posts: 14,625
  • How am I doing Beren ?
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #19 on: Yesterday at 05:47:17 PM »
TONNY IS ALWAYS THANKFUL WHEN WE PM THAT I USE ALL CAPS AND BOLD DUE TO HIS SUBSTANTIAL VISION PROBLEMS . HE HAS SHARED THAT HE DOES NOT PARTICIPATE AS MUCH AS HE USED TO BECUSE HE HAS TROUBLE READING WHAT WE POST SO IF YOU GUYS CAN REMEMBER THAT IT WILL MAKE IT A GREAT DEAL EASER FOR HIM TO REMAIN AN ACTIVE MEMBER .TONNY IS ONE OF THE FIRST TO OFFER UNCONDITIONAL SUPPORT FOR ANYONE IN NEED AND I ADMIRE THAT GREATLY IN HIM .

WRITING IN CAPS IS DISCOURAGED ON THE FORUM BUT IN THE THREADS TONNY STARTS I THINK ITS THE LEAST WE CAN DO FOR HIM . I HOPE THE MODS AGREE ITS THE RIGHT THING TO DO .

YOU ARE IN MY THOUGHTS TONNY AND I THINK YOU ADD SO MUCH TO THIS FORUM AND I AM SO HAPPY YOU ARE HERE .

Online Joe K

  • Global Moderator
  • Member
  • Posts: 4,827
  • 31 Years Poz
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #20 on: Yesterday at 06:35:22 PM »
THANKS JEFF, FOR LETTING US KNOW HOW WE CAN MAKE IT EASIER FOR TONNY TO READ WHAT WE WRITE.

IT'S NOT SHOUTING WHEN IT'S DONE SO A MEMBER CAN SHARE OUR FORUM.

JOE

Offline Tonny2

  • Member
  • Posts: 698
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #21 on: Yesterday at 08:30:14 PM »


     ojo         Aw Jeff, you are the greatest, thank you, I really appreciate it, this way, I do not have to use my magnified lense...my keyboard is a special keyboard for people with eyesight problems (big keys), that's why I can still post, but with this font size, it makes it easier for me to read you guys...thanks again Jeff and Joe...hugs        ojo

Offline Jeff G

  • Member
  • Posts: 14,625
  • How am I doing Beren ?
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #22 on: Yesterday at 08:39:18 PM »
YOU ARE A GREAT GUY AND ITS THE LEAST WE CAN DO

Offline DANIELtakashi

  • Member
  • Posts: 351
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #23 on: Today at 06:58:58 AM »
HI TONNY

GREETINGS TO YOU .

DANIEL
Japanese National.
Language:  Japanese and English
Reside in TOKYO
Have visited 45 US states, DC, and Guam and Saipan.

Offline DANIELtakashi

  • Member
  • Posts: 351
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #24 on: Today at 07:34:07 AM »
YOU ARE KIND AT HEART.
Japanese National.
Language:  Japanese and English
Reside in TOKYO
Have visited 45 US states, DC, and Guam and Saipan.

Offline bubba53

  • Member
  • Posts: 489
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #25 on: Today at 10:07:29 AM »
Hi Tony,
Sorry your eye is giving you such problems still.
I hope the treatment works and your pain is relieved .
Sounds like this doc at least has a plan ,which is good.
Took 3 long years to get mine .
Pm me when you get chance and catch up.
your a very special person and have lots here who adore you.
Be well my friend , Wade
"Who put the pepper in the....Vaseline  ? " Coffee Butler

Offline bubba53

  • Member
  • Posts: 489
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #26 on: Today at 10:24:01 AM »
SORRY TONY,
 TRIED TO USE BOLD PRINT , MY COMPUTER HAS A MIND OF IT'S OWN.
"Who put the pepper in the....Vaseline  ? " Coffee Butler

Offline Tonny2

  • Member
  • Posts: 698
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #27 on: Today at 02:09:00 PM »
SORRY TONY,
 TRIED TO USE BOLD PRINT , MY COMPUTER HAS A MIND OF IT'S OWN.

         ojo       Thanks Daniel and Wade...I will be fine, even looking like a pirate, lol...hugs   ojo

Offline bubba53

  • Member
  • Posts: 489
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #28 on: Today at 03:35:45 PM »
Hey Tony ,
Eye patches can be sexy !
"Who put the pepper in the....Vaseline  ? " Coffee Butler

Offline Tonny2

  • Member
  • Posts: 698
Re: CONFUSED AND FEELIN FRUSTRATED
« Reply #29 on: Today at 06:14:34 PM »
Hey Tony ,
Eye patches can be sexy !


     ojo     Hey my friend Wade, evrything thst covers my face, makes me look cuter, even a mask, would be better, lol...thanks my friend...hugs          ojo

 


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