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Author Topic: Losing It  (Read 6029 times)

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Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Losing It
« on: May 08, 2007, 02:04:45 PM »
Ya know, I really need to start using some KY Jelly so that I'm prepared when life decides to fuck me over. The funny thing is that I am not really angry about it but has that one burning question, WHY?

For those of you who didn't know, besides being poz and diabetic, I am also hearing impaired. I wear hearing aids in both ears and lost my hearing last July. The explanation I got from the ear doctor was, they don't know what causes it, it happens from time to time. I shed my tears and then tried to move on. I guess I must be taking baby steps or something. This past Wednesday, I had to get to get a hearing test after having major drainage in my right ear. I guess you know, I have lost 20 decibals of hearing in both ears or together I don't know, he just said 20 decibals. They thought they could give me some type of steroid but found out they couldn't since I am diabetic. I had to get blood drawn today, not sure what they are looking for but was told there are things that can cause hearing loss. Mind you this is not the same doc I saw a year ago but am now wondering why the first doctor didn't order this bloodwork? Am I just a number? Where is the love?

The doctor told me if they find anything that they will call. I guess you know, I am waiting for the bad news. Let's be real here, your hearing gets worse, it can never get better. But lately I have been actually wondering how long will it be before I am completely deaf. I have even made light of it and said that I will have to write people notes to cuss them out..But it also means I won't be able to drive anymore and that doesn't sit well with me. I hate having to depend on others to take me where I need to go.

I guess that's it, thanks for listening......
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Dachshund

  • Member
  • Posts: 5,943
Re: Losing It
« Reply #1 on: May 08, 2007, 02:24:31 PM »
Queen if it ain't one thing it's another...as my granny use to say, "some people were just born with the miseries." Thank God you don't need your hearing around here, at least you can still see us squawking. I'm showing you the love baby.

Aunty D

« Last Edit: May 09, 2007, 07:34:23 AM by Dachshund »

Offline Alain

  • Member
  • Posts: 680
  • I am.
Re: Losing It
« Reply #2 on: May 08, 2007, 02:48:10 PM »
Queen,

I saw your post, started reading it but had to go. The truth is I couldn't deal with it. Your struggle is no stranger to me and I know first hand how you feel right now.

I want to say something nice and comforting, simple words that would lift your spirits up and give you hope. But the only one that comes to mind is that you are not alone.

Life isn't fair and it is not like you do not have enough on your plate already.

Wishing you strength and most importantly; Love and a big hug.

Alain :-*

PS Deaf, deafened and/or hard of hearing people, can still drive btw.

Offline thunter34

  • Member
  • Posts: 7,305
  • His name is Carl.
Re: Losing It
« Reply #3 on: May 08, 2007, 02:51:36 PM »
That's what I was thinking!  I believe you should still be able to drive. 

Sorry to learn of your hearing loss problems, hon.

AIDS isn't for sissies.

Offline JohnOso

  • Member
  • Posts: 816
Re: Losing It
« Reply #4 on: May 08, 2007, 02:54:48 PM »
Queen,

I hate that you are having to go thru everything else on top of this damned disease also, love.  I'm not sure what else I can do except to tell you that I care about what is happening to you.  I'm with Doxie....sending you all the positive healing energy that I can muster up right now.

Much Love,
John


Offline Miss Philicia

  • Member
  • Posts: 23,904
  • celebrity poster, faker & poser
Re: Losing It
« Reply #5 on: May 08, 2007, 02:54:49 PM »
I'm so sorry QA!  You seem to have The Trifecta there.  Here's hoping it is not bad news.
"Iíve slept with enough men to know that Iím not gay"

Offline Dragonette

  • Member
  • Posts: 1,190
  • Spring symptoms
    • NotPerfectAtAll
Re: Losing It
« Reply #6 on: May 08, 2007, 03:23:54 PM »
I am really sorry to hear this. It's really inspiring how you keep a sense of humour about you.

Thinking of you.
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline anniebc

  • Member
  • Posts: 5,939
  • AM member since 2003
Re: Losing It
« Reply #7 on: May 08, 2007, 05:20:40 PM »
Hi Queen

I'm sorry to hear that you are struggling with yet another problem, but I've read your posts and I think the strength and humour you show here will get you through this.

My father was deaf and was still driving right up until he passed away, and my grandson is deaf also, but he works, drives everyday, he and his partner are expecting their first baby in August, being hearing impaired doesn't have to stop you from doing what you want to do.

I know it must be stressful dealing with this on top of everything else..but I have a strong feeling you will deal with this just like you have dealt with everything else in your life.

Thinking of you

Hugs
Jan :-*

-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline PeteNYNJ

  • Member
  • Posts: 979
  • When life gives you AIDS...make LemonAIDS!
    • Dance for Me, Puppets
Re: Losing It
« Reply #8 on: May 08, 2007, 05:40:21 PM »
Sorry to hear about your troubles.  Sending you some good vibes.

Question - do they think your hearing loss is due to HIV or Diabetes?

Offline Christine

  • Member
  • Posts: 1,069
Re: Losing It
« Reply #9 on: May 08, 2007, 06:17:44 PM »
Hi Queen,
I am sorry about all of this stuff. Sometimes it seems like it is just one thing after another. Sending you big hugs and good wishes your way.

Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline heartforyou

  • Member
  • Posts: 1,103
  • I must be a survivor in many ways...
Re: Losing It
« Reply #10 on: May 08, 2007, 07:47:49 PM »
Queen,

It always sucks when life presents another unwanted burden to us.
I know  : you will get used to it, so sad, too bad for you etc. etc.
In the end we are the ones that have to do the suffering and the adjustment.
However, knowing that many others on here have been robbed of different parts of their health can be of real help.

We know what it means to loose your face ( literary), or have to be confined to a wheelchair due to neuropathy, or loose your sight, as so many of us LTS have witnessed..

But yes honey, it just plainly sucks. You don't need more s**t on your plate.

You have helped me in the past,  by showing you care.
This is what I do know, even if it does not take away the pain.

Know that I am here, thinking of you and sending you a big KISS.

Truth is , internet and the Forum will be there, even if your hearing gets worse.

Love

Hermie :-*
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline cjc

  • Member
  • Posts: 1,011
  • Sweet Girl
Re: Losing It
« Reply #11 on: May 08, 2007, 08:18:39 PM »
Queen, I am so sorry to learn about this. I have to agree with what Ann Said. Your Strenght and humor in the face of your adversity will carry you through.You seem to be a strong woman and I admire you for that. Wishing the best for you.  Cristy

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,868
  • Vegas baby!
Re: Losing It
« Reply #12 on: May 08, 2007, 08:23:59 PM »
Hey Queen:  I remember when I first started posting on here, you were one of the first ones to reply to my thread and you made me feel very welcome.  For that I'm ever grateful....  I'm wishing you nothing but peace and hope I can return the love! :-* :-*
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Nico

  • Member
  • Posts: 262
Re: Losing It
« Reply #13 on: May 08, 2007, 08:50:38 PM »
Queen,
You have been through a pile of shit the past months.  I can relate a little since I have lost some of my hearing in my left ear.  Nothing to your extent, but the little I have lost allows me to relate somewhat to what you are going through. 

Your story grounds me and allows me to realize what I have today is precious.

Thank you.
Rog

Poz since 1990.

Offline StrongGuy

  • Member
  • Posts: 492
Re: Losing It
« Reply #14 on: May 08, 2007, 10:04:42 PM »
Queen sorry to hear about this latest bout of bad news. You're in my thoughts sweetie...

Mikey :)
"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Offline Teresa

  • Member
  • Posts: 1,753
Re: Losing It
« Reply #15 on: May 08, 2007, 10:30:33 PM »
Queen,

Sorry you are going through this. Know that you are in my thoughts and prayers. You hang in there hon.

Hugs
Teresa
Hubby HIV+ 5/5/06
CD4:320
  %: 26.7
 VL: <20
Atripla (started it 8/24/06)
 

Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: Losing It
« Reply #16 on: May 08, 2007, 10:36:19 PM »
Thank you all for the kind replies, I really appreciate it....Yes, things does seem to happen in pairs, Aunty but I keep telling myself what doesn't kill me makes me stronger. I didn't know that you could still drive and be deaf, well that is definitely a relief...Woo Hoo, still independant....Honestly folks, if I didn't keep a sense of humor about it all I would crack. Believe me, I have had a few days of pure frustration..But it is good to know that I have the support of friends.
 
Hermie, Thanks for keeping it real with me. I kinda feel bad now considering as I always say that there is someone doing worse than me. And you seconded it. Like all the other shit that is going on, I try to adapt and make the most of it.

Confusednewbie~~

They don't know what is causing it, that's why I had to get blood drawn. If it is something serious, I will get a call, if not see him in 2 months. I really hope they can find out what is causing this..I will keep ya posted but in 2 months time this thread will prolly be buried.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline ndrew

  • Member
  • Posts: 695
  • ....-.-.-.-.-.....
Re: Losing It
« Reply #17 on: May 09, 2007, 02:03:25 AM »
Hi Queen,

I am sorry to hear about your hearing problems.  I can only imagine how isolating it can be.  You may be able to get around, but it's harder to communicate with people.  Perhaps it makes you to independent, eh?  My meds are making it hard for me to articulate right now, but I am thinking of you.  Your words and wit have brought joy into my life on a number of occasions and for that I am greatful.

Luv,
Drew

Offline Nadine

  • Member
  • Posts: 1,253
  • Member since: August 2005
Re: Losing It
« Reply #18 on: May 09, 2007, 06:06:20 AM »
Quenn,

I am so sorry to hear of of your continued struggle...you are in my thoughts always.

(((HUGS)))

Offline bear60

  • Member
  • Posts: 4,104
Re: Losing It
« Reply #19 on: May 09, 2007, 10:03:03 AM »
HI Queen....I just read your post and wanted to let you know that I am thinking of you. Hope the doctors have good news for you.
Poz Bear Type in Philadelphia

Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: Losing It
« Reply #20 on: May 09, 2007, 10:08:03 AM »
Hi Queen,

I am sorry to hear about your hearing problems.  I can only imagine how isolating it can be.  You may be able to get around, but it's harder to communicate with people.  Perhaps it makes you to independent, eh?  My meds are making it hard for me to articulate right now, but I am thinking of you.  Your words and wit have brought joy into my life on a number of occasions and for that I am greatful.

Luv,
Drew

You are so right about communicating. It has already begun. Since having my hearing aids, it's hard to talk on the phone because of the feedback I get. Both cell phone and landline phones have speaker phones on them because I can hear better that way. Music in the car has gotten a little louder. For those scratching heads, I still have my car from the accident even though it is still damaged but will be driving another car in June or July. Small blessing amongst the storm of shit I have been going through.

It's good to know that my words reach people. It actually helps me to know that someone out there is listening to what I am saying. Like I said to someone in another thread, humor helps me to keep my sanity.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: Losing It
« Reply #21 on: May 09, 2007, 10:09:31 AM »
HI Queen....I just read your post and wanted to let you know that I am thinking of you. Hope the doctors have good news for you.

Let's keep our fingers crossed on that one....
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline AlanBama

  • Member
  • Posts: 3,604
  • Alabama: the 'other' 3rd World Country!
Re: Losing It
« Reply #22 on: May 09, 2007, 11:29:56 AM »
Michelle, you know I love you honey, and am keeping you in my prayers.

Love,

Alan   :-*
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Robert

  • Member
  • Posts: 2,643
Re: Losing It
« Reply #23 on: May 09, 2007, 11:43:52 AM »
Hi Queen.

I lost the hearing in my right ear because of this virus.  I was complaining about it to my Dr and she sent me to a ENT (Ear, Nose and Throat) dr.  He took one look inside and told me my inner ear was completely gone.  He couldn't quite believe it.  Something had eaten it completely away.  Sounds disgusting, doesn't it?  it will never come back. 

It's frustrating.  When I watch the TV I have the volume tuned up all the way but even that doesn't help much.  We use the 'closed captioning' function.  If it wasn't for that, we would never watch TV.  Fortunately for me, my partner is deaf.  He was born completely deaf and has never heard the sound of anything in his life.  That didn't stop him from driving though. 

I don't know what kind of tests the Dr took.  I can't imagine it would help though.  I know it's not too comforting, but at least I know a little of what you're going through.  Like I said, my right ear is gone and it's never coming back

good luck.
robert
..........

Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: Losing It
« Reply #24 on: May 09, 2007, 01:39:15 PM »
Robert~~

I never knew that hiv could affect your hearing. No one has told me this, ear doctor or my ID doc. I'm not even sure what they are looking for, only told that if they found something they would call. I guess that is suppose to keep me from worrying.

Funny thing is before I lost my hearing I had used the captioning when I would play my ps 2, now I really need it. So that wasn't much of an adjustment. In the beginning I had to turn the tv up full blast. I just found out that they could adjust the volume on my hearing aids. Now I don't have to have the tv up as much. I think I should look into learning how to sign.

Alan~~

Thanks for the love, I really appreciate it.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Dan J.

  • Guest
Re: Losing It
« Reply #25 on: May 09, 2007, 01:47:41 PM »
Queen,

All I can say is that I am thinking of you &  that I am so very sorry to hear of this latest struggle for you.

Love,

Dan

 :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-*

Offline Longislander

  • Member
  • Posts: 2,486
Re: Losing It
« Reply #26 on: May 09, 2007, 11:52:34 PM »
Hi Sweetie, I'm really sorry to hear your getting more crap thrown at you. I'm glad to hear your car is driveable at the moment, and that you'll be getting some new wheels soon! ;D

FYI, after reading Roberts post, I want to say this. I've had hearing problems since I was a kid. At 24 I had surgery in my left ear ( the bad one) . What caused the problem was Cholesteotoma(sp?). Infected tissue that grows around the hammer, anvil, and stirrup (bones), and basically eats them. Surgey did little for the hearing, just took out the infected tissue. At 37, I had to have the right ear done. Both prior to having HIV. I'm not up to hearing aids (yet)  But you should see me at work! I need to hear most of what goes on, and my friends tease me ( lovingly) because I cup my hands around my ears to catch more sound-lol Perhaps this is what Robert had. MY sister ended up with it in one of her ears around the same time I developed the right ear problem a few years back. She doesn't have HIV. I guess it's hereditary??

Michelle, just know I'm thinking about you and hoping things settle down for awhile~

Paul
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline northernguy

  • Member
  • Posts: 1,347
Re: Losing It
« Reply #27 on: May 10, 2007, 11:15:35 AM »
Sorry to hear about the problems, sometimes it feels like one thing after another doesn't it.  Hope the doc is able to shed some light on the matter.
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: Losing It
« Reply #28 on: May 10, 2007, 05:49:24 PM »
Hey Paul~~

Good to see you back posting. Yeah, a gf of mine who is a mechanic tried to bang out some of the damage to the back of the car and actually had to put some blocks around my coil spring which got messed up. Another gf has a car that she is giving to my godson when he graduates in 09 but I have to make it legal. Not a bad exchange since during this time I can save towards another car. There is this all white Cadillac right by my house but I can't afford it right now. Best believe my next car will be metal too.

Whatever that thing is called that ate your ear, I don't think I have that, they would've seen that when he looked in my ear, right? I haven't received a call back and I know they prolly have the results from the bloodwork right now. I am trying to take that as a good thing but am tempted to call my primary doctor to get the results. The first doctor who looked at my ears a year ago said it might be hereditary but said he wasn't sure. After getting with my brother in Georgia, as far as he knew, no one in the family has ever lost their hearing so......I wish things would settle down too for once.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: Losing It....The Update
« Reply #29 on: May 17, 2007, 07:45:22 PM »
For those interested, I thought I would update you on what's going on. For one, I had to call my primary doctor's office to get the results which I thought was rude to say the least. I found out that I have cmv retinitus. I remember someone talking about it here in the past. You would've thought that the Ear, Nose, and Throat office would've called me for something like that. Just the name of it sounds frightening. If I understood correctly, I think this what they think is causing me to lose my hearing so rapidly.

If anyone knows how to track down the previous thread about cmv, please post it. Anyone that has had this that cares to share their experiences, I would appreciate it..... :-\
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

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Offline Matty the Damned

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Re: Losing It
« Reply #30 on: May 17, 2007, 07:50:59 PM »
I found out that I have cmv retinitus.

Queenie,

Do you mean CMV retinitis? If it is retinitis then that affects the retina, the light sensitive area at the back of the eye which enables us to see. As I understand it CMV retinitis doesn't affect your hearing.

I'm so sorry that these things are happening to you babe. I feel for you. If there's anything I can do you just get in contact.

MtD
(Who has deafness in his family)

Offline pozattitude

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Re: Losing It
« Reply #31 on: May 17, 2007, 07:54:47 PM »
Queen,

I feel your pain.  I am so sorry that you have to go through this.  I wish there was something I could say that would make things better, but the best I can offer is to say I will think of you and send some positive energy your way.
POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

Offline aztecan

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Re: Losing It
« Reply #32 on: May 18, 2007, 10:57:25 AM »
Hey Michelle,

Damn girl, when it rains . . .

I wish there were more I could offer than my thoughts and hopes. I will send positive energy your way too.

Just remember I'm here for you.

HUGS,

Mark

(Whose brain is a bit sustiva-addled this morning and isn't being very articulate.)
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Queen Tokelove

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Re: Losing It
« Reply #33 on: May 23, 2007, 02:16:10 AM »
Matty~~~

I guess I assumed that is what caused my hearing loss because the Ear, Nose, and Throat doctor is the one who pushed for the blood test and the results was CMV. I did a bit of research and was not too happy with what I found out. From what I saw it said this happens when the cd4 drops below 50...I am hoping that is not the case but was concerned that they were willing to make me wait 2 months to get the results. I'm glad I asked my primary doctor for the results before then. I haven't had any problems with my eyesight. No dots or blurriness or anything like that.

With all the stuff that has been happening to me lately, I am wondering what did I do to deserve it. Hmm, maybe it was because I was a bitch in my past life, oh wait, that was this life... :D...I don't know, all I can do is think good thoughts and try to shrug it off.

Thanks Mark and Poz for the good vibes, I can use all I can get about now. I have an appointment with the opthamologist on June 12th. I'm hoping they won't have to go in with a laser or some stuff and if they do, I hope they can put me to sleep cause I don't think I could sit there with a laser coming towards my eye..
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Miss Philicia

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Re: Losing It
« Reply #34 on: May 23, 2007, 09:19:40 AM »
Do you HAVE an actual CMV infection or did you just test positive for the presence of antibodies?   If it's the latter than most of us here have that whether we know it or not.
"Iíve slept with enough men to know that Iím not gay"

Offline Queen Tokelove

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Re: Losing It
« Reply #35 on: May 23, 2007, 12:53:34 PM »
Do you HAVE an actual CMV infection or did you just test positive for the presence of antibodies?   If it's the latter than most of us here have that whether we know it or not.

Well Philly, that is a good question. I guess because it was a blood test, I have the antibodies but was told I have cmv. I know I had tested for this a couple of years ago and everything was ok. Like I said this all new to me. Anything else you care to share? I'm trying to piece this all together and make sense of it all. No doctors have explained anything to me as of yet. They were willing to make me wait 2 months to find out if I had not called my primary doc and asked him to get the results. Should I not be concerned?
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

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Offline Carolann

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Re: Losing It
« Reply #36 on: May 23, 2007, 01:35:30 PM »
Queen,

I am so sorry that you are experiencing such a difficult time. 

Offline Miss Philicia

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Re: Losing It
« Reply #37 on: May 23, 2007, 04:03:57 PM »
Well Philly, that is a good question. I guess because it was a blood test, I have the antibodies but was told I have cmv. I know I had tested for this a couple of years ago and everything was ok. Like I said this all new to me. Anything else you care to share? I'm trying to piece this all together and make sense of it all. No doctors have explained anything to me as of yet. They were willing to make me wait 2 months to find out if I had not called my primary doc and asked him to get the results. Should I not be concerned?

If it's just the antibodies like I said most HIV+ people have them, in fact FORTY % of even NON HIV infected people have them.  CMV is one of those things that effected HIV folks way back in the epidemic's beginnings but fortunately due to better treatment and HAART no longer does very much.

source
also
source 2 HIV specific

If you read that link though you'll see that immune compromised individuals that test positive for CMV antibodies should be aware of the fact and then get their eyes checked regularly.  As I stated, I tested positive for these antibodies eons ago, probably because my cd4's were quite low initially with my diagnosis.  However, I'm embarrassed to say that I have not had my eyes checked for about 5 years but (knock on wood) my vision is still the 20/20 vision I've always had.

So basically yes, I think you are over-worrying about this unless you have low cd4's (sorry, I can't recall what your stats are dear).  I'd say just relax for now until your next doctor's visit.  If it will make you feel better you can always say you want to go for an eye check up anyway, just to be safe.
« Last Edit: May 23, 2007, 04:06:34 PM by philly267 »
"Iíve slept with enough men to know that Iím not gay"

Offline Queen Tokelove

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Re: Losing It
« Reply #38 on: May 23, 2007, 09:32:47 PM »
Philly~~~

Thanks for the info dear, I appreciate it. The one link is the one I first found. The other was helpful as well. But after reading about the meds, I guess your choices are blindness or renal failure. What a choice! ;D But you are right, I will chill out with the worrying. Back in March my cd4 was 261 and my viral load was 13000 and some change. I'm going to get bloodwork done tomorrow for my visit in June. But honestly, with this going on, I'm expecting bad news. Bad things seem to be happening with me lately. My motto now is 2 tears in bucket, motherfuck it!
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline BT65

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Re: Losing It
« Reply #39 on: May 25, 2007, 12:46:16 AM »
Philly~~~

My motto now is 2 tears in bucket, motherfuck it!

 :D :D  It's good to see that you're keeping your sense of humor!  I really hope and pray all goes well for you and your upcoming tests! :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Queen Tokelove

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Re: Losing It
« Reply #40 on: May 25, 2007, 01:12:18 PM »
Betty~~~

I have to keep a sense of humor or I would lose it, seriously. I still stay on top of things,it just seems like every time I go to a doctor, I get bad news. I know it could be worse like being laid up in a hospital, so I count my blessings. Just call me Little Miss Sunshine. I am trying to teach myself not to get upset about things that are out of my control.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Atripla_User

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Re: Losing It
« Reply #41 on: August 07, 2007, 09:45:55 AM »
I want to add to this, I had loss of hearing in both ears, (couple years ago) they were filled with mucus, which had to be drained and vaccummed  out buy an ent, I had tubes put in. The ent told me that it is common for hiv patients to have problems like this, my estachian tubes were swollen and could not drain or regulate air pressure properly. since I have been on harrt, the ears have been working fine, and so far I haven't had to go in for more tubes or ear vaccumming.

Akasha, how is it going for you right now?

Offline RapidRod

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Re: Losing It
« Reply #42 on: August 07, 2007, 12:19:36 PM »
Queen, be glad you couldn't get the steriod shots in your ear. I had two rounds, four shots and it hurt like a mother and still didn't help. I've only had the loss in my left ear and they say it was because of the histo. It's kind of weird the way it happened to me. I had hearing one day and the next day it was gone. Just with the blink of an eye and I was in the hospital when it happened. So I can't say they didn't try quick to try to fix it.

Offline Queen Tokelove

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Re: Losing It
« Reply #43 on: August 07, 2007, 12:35:24 PM »
I guess you can say things is fine with my hearing. But not so good with the hearing aids. About a week ago, these people come to our building to give hearing tests and clean hearing aids, so I went to see. Come to find out that the woman works for Sharkey, the people who makes my hearing aids. I explained to her that I don't seem to get as much clarity from my hearing aids and how I am always getting feedback. She told me that I shouldn't be having these problems, did I talk to the ENT. I told her what they told me and that the only thing they did was adjust the volume. She told me that they were wrong and that she could reprogram them for me. She tried to remain professional and defend the ENT saying that they are good at what they do...I wonder. Anyhoo, she told me to give her a call and she would re program them for me. I lost her card.....

That's strange, Rod, the ENT said that it didn't involve a needle for the steroids because I guess I had a look of horror on my face when he mentioned it. All they seem to do is clean my ears out and give me hearing tests. I still would like to know what caused this instead of trying to diagnose myself...*sighs*
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline RapidRod

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Re: Losing It
« Reply #44 on: August 07, 2007, 01:28:45 PM »
Oh they lied to you, it's deep inside the middle ear.  After the second set of shots I said I wouldn't  be back. They talked about putting in a BAHA implant and I said I would talk to them when and if I started loosing hearing in my right ear. So far my right ear is still good.

Offline zachysmom

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Re: Losing It
« Reply #45 on: August 07, 2007, 10:13:09 PM »
Q,
First I'm really sorry about all that has happened to you.
I don't know anything about ear problems or hearing loss with HIV, but I did see a doc 2 years ago for a routine eye exam, who informed me that the virus can show up in the eyes, and cause white spots in your vision.
I did not know this at the time, so to read about your hearing is very concerning...'
Please keep us posted...

Best wishes, much love,
nicole
From Russia with love,
Nicole

Offline Queen Tokelove

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Re: Losing It
« Reply #46 on: August 08, 2007, 02:11:09 AM »
Now see Rod, that's messed up. I guess you can say that my diabetes helped me get out of that. There would've been no way I could let him come towards my ear with no damn needle. I don't see that one happening....ever.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

 


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