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Author Topic: One year today  (Read 1929 times)

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Offline debsd222

  • Member
  • Posts: 69
One year today
« on: December 18, 2009, 12:00:06 PM »
Well its been one year today since my diagnosis....what an eventful year. Respiratory infections, thrush, shingles, pneumonia, a couple hospitalizations....but overall my outlook and attitude is good, no depression. Im remembering that day a year ago when I was screaming in my car on the drive home, completely lost and terrified. Ive been on the meds for about 9 months and am seeing great improvement in my numbers. My question for you all is this - I still feel sick about 50% of the time -fatigue, diarrhea, just overall not feeling well. Is this just ongoing, due to the meds or should I be feeling better by now? I feel like I just can't get my strength back. Im extremely compliant with the meds, also taking meds for post-shingles nerve pain, taking vitamins, eating well, resting alot, no drinking or drugs....I feel like Im doing everything right but still feel crappy. Do any of you experience this?
April 08 3 month bout w/ shingles, ongoing nerve pain
Dec 08 pos  cd4 200 %8  VL 18,000
Feb 09 started sustiva, truvada -allergic to sustiva, hospital 4 days.
March 09 started truvada, reyataz and norvir
March 09  cd4 279  % 12 VL 10,000
April 09 cd4 327  %12  VL 300
Aug 09 cd4 392  %16  Vl undetectable
Dec 09 hospital pneumonia 6 days
Dec 09 cd4 462  %20  VL undetectable
Mar 10 cd4 629 27% VL undetectable
July 9, 2010 cd4 505  21% VL undetectable
Oct 2010 cd4 689  22%  VL 64
Nov 2010  cd4689  22%  VL  UD
May 2013 cd4 759. 29%. VL. UD

Offline tommy246

  • member
  • Member
  • Posts: 435
Re: One year today
« Reply #1 on: December 18, 2009, 04:26:14 PM »
I am 1 year and two weeks i dont know what your numbers are or were but i also had pnuemonia in august shingles a year before  diarriah all the time and generally felt old and exhausted my whole body ached but now on meds  after 4 weeks i feel 110 % better and revitalised are your numbers improving and what meds are you on. Just keep doing things right it takes some people longer than others what does your doc say.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline weasel

  • Member
  • Posts: 1,629
Re: One year today
« Reply #2 on: December 18, 2009, 05:17:24 PM »
@ debsd222  :)

                              Hi there !

               It  WILL  get better  ,  I have had HIV for almost  30  years !!!!!!!!!!!!

    I have been on MEDS   for 5 years now !

   The first couple of years on MEDS  I thought I was going to die !

    I now feel NORMAL   .........................   most of the time !

   Belly  issues    plague me  :-[

   But  life is good !  I feel  well ,  I think I look good for a 55 years of age man .


   Watch  what vitamins you take , Some cause diarrhea !!

    Try to focus  on other things . No mater how small they seem   try to think of good things

 and what you CAN  do and   NOT what you can't !

   It gets better !!!!!!!!!!


                                  Happy Holidays ,
                                                            Carl
" Live and let Live "

Offline debsd222

  • Member
  • Posts: 69
Re: One year today
« Reply #3 on: December 19, 2009, 12:02:40 PM »
I know I just have to be patient. Im taking Truvada, Norvir and Reyataz.  Tried sustiva but ended up in the hospital covered in hives from head to toe. My numbers are improving - CD4 from 200 to 475, VL undetectable, % from 8 to 12.  Doc says Im doing great but she also questions the level of my fatigue at this point. I sometimes have to rest in the middle of folding a load of laundry, and Ive been short of breath since I had the shingles. I just did a right heart cath - no blockages so its back to the pulmonologist next week to see what he can figure out.    Can someone tell me how to post my stats at the bottom of the email? thanks.
April 08 3 month bout w/ shingles, ongoing nerve pain
Dec 08 pos  cd4 200 %8  VL 18,000
Feb 09 started sustiva, truvada -allergic to sustiva, hospital 4 days.
March 09 started truvada, reyataz and norvir
March 09  cd4 279  % 12 VL 10,000
April 09 cd4 327  %12  VL 300
Aug 09 cd4 392  %16  Vl undetectable
Dec 09 hospital pneumonia 6 days
Dec 09 cd4 462  %20  VL undetectable
Mar 10 cd4 629 27% VL undetectable
July 9, 2010 cd4 505  21% VL undetectable
Oct 2010 cd4 689  22%  VL 64
Nov 2010  cd4689  22%  VL  UD
May 2013 cd4 759. 29%. VL. UD

Offline leatherman

  • Member
  • Posts: 6,051
  • Google and HIV meds are Your Friends
Re: One year today
« Reply #4 on: December 19, 2009, 12:26:22 PM »
Can someone tell me how to post my stats at the bottom of the email?
over on the left above your avatar, click USER
in the second column under Modify Profile click Forum Profile Information
got down to the signature section, and enter whatever you would like to show up at the end of each post

 ;) mikie aka leatherman aka the ComputerTutor
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline leatherman

  • Member
  • Posts: 6,051
  • Google and HIV meds are Your Friends
Re: One year today
« Reply #5 on: December 19, 2009, 12:47:17 PM »
Doc says Im doing great but she also questions the level of my fatigue at this point. I sometimes have to rest in the middle of folding a load of laundry, and Ive been short of breath since I had the shingles.
I was hospitalized for 5 days with PCP on my 34th bday. Two years later on my 36th bday, I was hospitalized for 4 days with pneumonia. I never recovered well during that two year period between bouts. I was always sick, tired and fatigued. After the second bout, I had the same issues. It took me 30 days before I had the strength to climb the stairs to get to my own bedroom. Months later, chores that used to take hours took days to complete. Not trying to sound too "down" here but to be honest it was several years before I would have said that I actually felt "recovered".

Even today, though various tests show that everything is back to normal, I find I feel tired or out-of-breath quickly sometimes; but I continue to exercise, do chores, ride my bike, swim, etc. and just keep 'pushing through" those tough times with short breaks to catch my breath.

Not that I'm criticising your doctor; but you may have to do like I and others have done (with hiv and without) and that's to keep making your issues known regardless of what the doctor "thinks" you should feel like. My doctor tells me my lungs are fine; but I know when I 'm out of breath and I don't think I should be. My doctor says I can't know when the norvir gelcap bursts in my stomach; but I sure can tell on those days when it makes me throw up. I started keeping a journal of when, where, and the duration of various issues like that and when my doctor says it just can't be, I have the facts of my life to prove that it can be. I think a journal can either help a doctor pinpoint an issue or at least get them to agree that you're having an issue.

Don't be too down-hearted. You may just be a person that takes longer to "recover" regardless of what you or your doctor may hope or think. But as long as you are having these kinds of issues keep bringing them up to your doctor, so that appropriate tests are done in case there is more to your situation that just a long recovery time.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline debsd222

  • Member
  • Posts: 69
Re: One year today
« Reply #6 on: December 20, 2009, 01:18:47 PM »
Thanks for your responses. I think Leatherman's idea about keeping a better journal would help.  I also think sometimes Im just tired of being sick, and long to have things "back to normal". Nice to have some perspective from you all. Thanks!
April 08 3 month bout w/ shingles, ongoing nerve pain
Dec 08 pos  cd4 200 %8  VL 18,000
Feb 09 started sustiva, truvada -allergic to sustiva, hospital 4 days.
March 09 started truvada, reyataz and norvir
March 09  cd4 279  % 12 VL 10,000
April 09 cd4 327  %12  VL 300
Aug 09 cd4 392  %16  Vl undetectable
Dec 09 hospital pneumonia 6 days
Dec 09 cd4 462  %20  VL undetectable
Mar 10 cd4 629 27% VL undetectable
July 9, 2010 cd4 505  21% VL undetectable
Oct 2010 cd4 689  22%  VL 64
Nov 2010  cd4689  22%  VL  UD
May 2013 cd4 759. 29%. VL. UD

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: One year today
« Reply #7 on: December 21, 2009, 07:26:17 PM »
Hi debsd ==

You don't say if you are also seeing a therapist so I'd also offer that option up.  You'd be surprised how depression and effect you physically as well as mentally.  I'm not saying that it is depression but it's certainly a possibility.

Also I agree 100% with Mikie ... you have to be proactive with your health.  Never tell the doctor you are feeling "ok" if you aren't.  Let them know about every little ache and pain.  Keep that journal and bring it along so you can ask your doctor all the questions that have come since your last visit.

Here's to feeling better in 2010!!!

Hugs,
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline debsd222

  • Member
  • Posts: 69
Re: One year today
« Reply #8 on: December 22, 2009, 11:28:01 AM »
I saw a social worker at Kaiser a few times, and go to the psychiatrist to try to get me sleeping better. Maybe I need to open up with the shrink more about how Im feeling...I feel like Ive accomplished so much in this year, but sometimes I just feel sorry for myself, and alone, and tired of the continual complications .My kids are informed but neither one really wants to talk about it so I try nor to burden them with the details. Ive been bouncing back and forth between cardiology and pulmonary trying to discover the source of my shortness of breath and fatigue.  ???   Guess I need to just hang in there and keep taking the next referral til we get it figured out. Im learning alot from what you folks are saying, so Ill stay plugged in. Thanks!
April 08 3 month bout w/ shingles, ongoing nerve pain
Dec 08 pos  cd4 200 %8  VL 18,000
Feb 09 started sustiva, truvada -allergic to sustiva, hospital 4 days.
March 09 started truvada, reyataz and norvir
March 09  cd4 279  % 12 VL 10,000
April 09 cd4 327  %12  VL 300
Aug 09 cd4 392  %16  Vl undetectable
Dec 09 hospital pneumonia 6 days
Dec 09 cd4 462  %20  VL undetectable
Mar 10 cd4 629 27% VL undetectable
July 9, 2010 cd4 505  21% VL undetectable
Oct 2010 cd4 689  22%  VL 64
Nov 2010  cd4689  22%  VL  UD
May 2013 cd4 759. 29%. VL. UD

Offline leatherman

  • Member
  • Posts: 6,051
  • Google and HIV meds are Your Friends
Re: One year today
« Reply #9 on: December 22, 2009, 12:15:07 PM »
I see you got your numbers going in your sig line now. WooHoo! (I take reyataz and norvir too; but with viread and videx ec) But am I reading that right? were you JUST in the hospital with pneumonia?!?! It says "Dec 09 hospital pneumonia 6 days". If that's right it's no wonder you're still feeling crappy. LOL

Quote
I feel like Ive accomplished so much in this year, but sometimes I just feel sorry for myself, and alone, and tired of the continual complications. My kids are informed but neither one really wants to talk about it so I try nor to burden them with the details.
Don't feel bad about feeling "bad", as in emotionally. It's tough enough to handle wrapping your brain around just being infected, much less when you're having health issues too. You really have come a long way in just a year; but even that kind of good news takes a bit to sink in - especially when you are still having issues that put you in the hospital twice in one year!! Don't beat yourself up for not being perky. LOL But don't wallow in pity either. Look at how well your numbers are going. You just got to take into consideration that your visible health always follows a little behind the blood work results. You can feel good while your numbers are going down; just as you can still feel icky while your numbers are improving.

Though I'm not therapist, I have lived with this disease for a long time now and can tell you that the feeling tired, alone and fed up with the "continual complications" is par for the course. Thinking back after my two bouts of pneumonias, I had about 5 yrs that I refer to as the "sick years". God, I was so tired of being "half sick" all the damn time. But I still hadn't been able to reach undetectable, so it's no wonder I felt crappy. However, now that I've been at undetectable around 2 yrs, I really am feeling much better. Hopefully in a few more months, after the meds have really kicked the virus' butt, when your body has had some time to recover from the HIV damage, when your body has had some time to recover from shingles, atripla rash, and pneumonia, you'll really start to feel better most of the time. You know, untreated HIV is still a killer, so this is one tough bug your body has been dealing with, and you're still just feeling the effects of the damage it caused.

Hang in there and keep thinking happy thoughts about how your health is improving (I know that's hard to do some days; but it's proven to be beneficial to recovery) One thought that should help you feel "perkier" is to remember that spending Christmas at home with your kids is a heckuva lot better that spending the holiday IN the hospital! ;D

Best wishes to you and yours!  :-*
mikie
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline debsd222

  • Member
  • Posts: 69
Re: One year today
« Reply #10 on: December 22, 2009, 06:15:43 PM »
Thanks, Mikie, for the advice and support. It helps to hear from you long term survivors that everything thats happening is pretty typical. And you're right, Ive come a long way in a year....lots to feel good about. Hope you have a great holiday!   Deborah
April 08 3 month bout w/ shingles, ongoing nerve pain
Dec 08 pos  cd4 200 %8  VL 18,000
Feb 09 started sustiva, truvada -allergic to sustiva, hospital 4 days.
March 09 started truvada, reyataz and norvir
March 09  cd4 279  % 12 VL 10,000
April 09 cd4 327  %12  VL 300
Aug 09 cd4 392  %16  Vl undetectable
Dec 09 hospital pneumonia 6 days
Dec 09 cd4 462  %20  VL undetectable
Mar 10 cd4 629 27% VL undetectable
July 9, 2010 cd4 505  21% VL undetectable
Oct 2010 cd4 689  22%  VL 64
Nov 2010  cd4689  22%  VL  UD
May 2013 cd4 759. 29%. VL. UD

 


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