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Author Topic: Is it just me?  (Read 7285 times)

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Offline trinipoz

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Is it just me?
« on: June 27, 2010, 06:46:47 pm »
I have been HIV positive for almost 4 years now and I still get the same fear and anxiety when I visit the clinic like when I was first diagnosed. The nurse who was taking my blood pressure got concerned when she realized my BP was abnormally high and had to do it 3 times (along with me breathing and telling myself to calm down) until it got to a acceptable level.

It is also the only time where I feel like I am sick and forced to deal with the reality of my situation.

I am just curious if anyone goes through this or is it just me?
O. Kayo
Surviving the medication, stress and stigma of HIV since 6th December 2006

Offline hotpuppy

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Re: Is it just me?
« Reply #1 on: June 27, 2010, 11:47:28 pm »
I sometimes am nervous ... but overall, no most of the time I'm fine and relaxed.  It's when I don't feel like I have control that I get nervous or freaked out.
Don't obsess over the wrong things.  Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion.  It's about getting out there and enjoying it.   I am a person with HIV - not the other way around.

Offline Hellraiser

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Re: Is it just me?
« Reply #2 on: June 27, 2010, 11:52:21 pm »
I'm anxious and upset about my appointment tomorrow.  They've asked me to bring proof of income and my prescriptions, they've never asked me to do that before so I'm kinda curious as to why the sudden change.

Offline tednlou2

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Re: Is it just me?
« Reply #3 on: June 28, 2010, 12:00:55 am »
Well, I have anxiety issues all the time, but they have gotten much better.  I do notice that from the time I do my bloodwork to my appt, I have much more anxiety.  The night before the appt I usually feel very uneasy and can't sleep very well.  It is kinda like the feeling of getting tested for HIV and going for the results when you think it has a good chance of being poz.  Of course, that was way back when I didn't have the virus.  

If I don't feel well (like now), I get anxious.  My brother and his partner were just here for a visit.  I was telling them how I've had a sore throat since Wednesday and now losing my voice.  My brother made the comment that is what happened to his partner's uncle who died of AIDS.  I asked why he would even say that to someone he knows has anxiety issues.  His uncle was around 50 years old and I think poz for 20 years and didn't take his meds.  Our situations are totally different, so why make some comparison.

Sorry for going off on a tangent, but this just happened like an hour ago and I'm still upset about it.  Back to your question, I do feel very anxious seeing the doc.  I always think he is going to tell me some awful news.  Except for this last appt, I always left feeling pretty good.

Offline skeebo1969

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Re: Is it just me?
« Reply #4 on: June 28, 2010, 12:12:08 am »
I have been HIV positive for almost 4 years now and I still get the same fear and anxiety when I visit the clinic like when I was first diagnosed. The nurse who was taking my blood pressure got concerned when she realized my BP was abnormally high and had to do it 3 times (along with me breathing and telling myself to calm down) until it got to a acceptable level.

It is also the only time where I feel like I am sick and forced to deal with the reality of my situation.

I am just curious if anyone goes through this or is it just me?

  Trini,

     I think it's different for everyone, just like how some people can seem to handle their diagnosis well and others fall apart.  In your case anxiety could be caused just because you have to see the doctor.  Judging from your age I would guess doctor visits may have not been the norm for you until after your diagnosis.  I guess in the beginning I was stressed out seeing the doctor, but not really anymore; he frustrates me to no end sometimes.  

I'm anxious and upset about my appointment tomorrow.  They've asked me to bring proof of income and my prescriptions, they've never asked me to do that before so I'm kinda curious as to why the sudden change.

  I remember having to do this once, but for the life of me I can't remember why.  Don't you have to be re-certified every 6 months or something like that?  In any event I hope it goes well, good luck.

    
I despise the song Love is in the Air, you should too.

Offline mecch

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Re: Is it just me?
« Reply #5 on: June 28, 2010, 12:39:10 am »
When i see the ID, I sometimes fret about how to deal with a side effect I might be having. Its the same little anxiety I might have going to generalist for some small complaint.  I don't fret about numbers and my future and having HIV.  That was mostly the first year.
Though I didn't enjoy the small blip I had around Xmas 2009, it's true.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tommy246

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Re: Is it just me?
« Reply #6 on: June 28, 2010, 08:20:49 am »
Trini im the same i go day after day never thinking about hiv untill its bedtime and i pop my pill . Yet i get a bit worried everytime its my three or four monthly visit to the hospital just worry about the what if scenario in case something goes wrong with my results etc, then im fine within minutes of leaving the hospital and wonder what all the fuss was over. Im 18 months pos and 7 months on meds and feel i have come to terms quite quickly and successfully with my diagnosis. My first few days i thought i had days to live , next stage was three months of not being able to get hiv out of my thoughts then thanks to this forum i got educated about hiv and had lots of questions answered by many helpful regular posters on here.
You often read on here things get better in time but you think its impossible initially but it does get better .
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 phildinftlaudy

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  • sweet Ann what you think babe...
Re: Is it just me?
« Reply #7 on: June 28, 2010, 08:33:50 am »
Usually, I get kind of excited to go to the ID doc --- in the sense that I get my lab results when I go  (and because I know I'm being adherent I usuallyl expect that they will be improved) -- On the other side of the coin, I also know that if they go down or there is some other "weirdness" about them, that I am at least aware of it and can address it appropriately.  I am one of those type of people who would rather know then not know --- good or bad.

Trey - I remember when I was under one of the programs (prior to my insurance kicking in) I had to recert every year (take in income info and provide info regarding scripts) - so this is probably the case.

September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline leatherman

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Re: Is it just me?
« Reply #8 on: June 28, 2010, 10:04:44 am »
They've asked me to bring proof of income and my prescriptions, they've never asked me to do that before so I'm kinda curious as to why the sudden change.
I would guess recertification purposes. Although depending on the doctor (ie many clinics) will often randomly ask for this information or ask a patient to identify their medications. It's kinda a test. If you've been properly adherent to your meds, you should know the answers, or have the bottles handy ;)


after 18 yrs, this last appt to see the doc was the first time I wasn't sweating like a pig by the time I got into the exam room. For years, as I sit in the waiting room, my pits and the palms of my hands will end up drenched. But then again for years and years, I was pretty sick and had really low tcells. ;)

I think after the 4 or 5 years that I've been doing well enough now, that I finally just gave up caring about which way my tcell number went (up or down) as long as the VL stayed UD. Amazingly, while staying UD once again, I hit the highest tcell count in 20 years. Maybe now I can quit worrying (and sweating!) so much  :D ;D
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 WillyWump

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Re: Is it just me?
« Reply #9 on: June 28, 2010, 11:48:43 am »
No anxiety here, I just load up on Narcotics and Benedryl prior to my appt...just kidding, (or am I?).

No I've gotten much better and the anxiety only arises as Doc goes down the list of numbers from my labs...It's a long list and the CD4 and Vl are always the last so as she nears the end of the list my heart starts pumping and I get sweaty. I'm always afraid I'm going to have a sudden treatment failure, I doubt the fear will ever subside. I think it's it's natural to fear bad news in the face of such a vile condition such as HIV.

-Will
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Sweet_C

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Re: Is it just me?
« Reply #10 on: June 28, 2010, 07:57:12 pm »
I actually like going to the ID doc.  I like knowing that everything's under control and also feeling like I can talk about my disease freely without the pain of stigma.  Everyone in the office is nice and friendly and the experience is as pleasant as can be.

However, I always feel anxiety when I get a call from my OBGYN.  He was the one who called me with my diagnosis, and it was totally unexpected.  Every time I go back to his office, it brings back memories of the day I found out I was poz.  Sometimes I feel so bad for him because it seems like I always have some sort of problem to deal with.  He usually calls all his patients with positive as well as negative news, which is a really nice thing to do, but when his name pops up on my caller ID I'm always filled with dread.  I'm always afraid that he will call and tell me I have cancer or yet another deadly STD.
Tested positive on September 11, 2008

Offline hotpuppy

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Re: Is it just me?
« Reply #11 on: June 28, 2010, 08:02:05 pm »
I'm anxious and upset about my appointment tomorrow.  They've asked me to bring proof of income and my prescriptions, they've never asked me to do that before so I'm kinda curious as to why the sudden change.
I'd conveniently forget my prescriptions and have a handy "emergency" list on a scrap of paper in my wallet. 
Don't obsess over the wrong things.  Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion.  It's about getting out there and enjoying it.   I am a person with HIV - not the other way around.

Offline Miss Philicia

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Re: Is it just me?
« Reply #12 on: June 28, 2010, 08:15:02 pm »
I don't ever get nervous and actually look forward to a visit with my swarthy Lebanese physician.
"I’ve slept with enough men to know that I’m not gay"

Offline trinipoz

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  • Just being me
Re: Is it just me?
« Reply #13 on: June 28, 2010, 10:38:40 pm »
Yeah you are right Skeebo. I never had much need to visit the doctor before my diagnosis. In addition I am all business when I go to the clinic while doctors, nurses and patients like to chit chat with you and I am not the type :-X
O. Kayo
Surviving the medication, stress and stigma of HIV since 6th December 2006

Offline justaguy

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Re: Is it just me?
« Reply #14 on: June 29, 2010, 12:24:46 am »
I'm anxious and upset about my appointment tomorrow.  They've asked me to bring proof of income and my prescriptions, they've never asked me to do that before so I'm kinda curious as to why the sudden change.

Mine just sent me a letter requesting proof of income.  Even though I have private insurance that pays for everything, our state requires them to have proof of income on file.  It's a Ryan White Clinic associated with a state hospital, so I assume it has something to do with needing to know what percentage of patients qualify for aid, etc?  Maybe that's the situation with yours? 
Estimated infection: 3/2008
Tested HIV positive: 3/31/2009
CD4 136/unknown %/VL 150,000: 4/6/2009
Started Atripla 4/17/2009
CD4 255/19%/VL 409 5/27/2009
CD4 247/??/VL 161 6/27/2009
CD4 257/21%/VL 60 7/22/2009
CD4 352/22%/VL Undetectable 10/21/2009
CD4 490/27%/VL Undetectable 2/15/2010
CD4 397/?/VL Undetectable 7/2/2010

Offline Hellraiser

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Re: Is it just me?
« Reply #15 on: June 29, 2010, 10:16:28 am »
Mine just sent me a letter requesting proof of income.  Even though I have private insurance that pays for everything, our state requires them to have proof of income on file.  It's a Ryan White Clinic associated with a state hospital, so I assume it has something to do with needing to know what percentage of patients qualify for aid, etc?  Maybe that's the situation with yours? 

They wanted to know if I qualified for their sliding scale and of course I do.  It was just weird and I was irrationally anxious about the whole thing.

Offline hope_for_a_cure

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Re: Is it just me?
« Reply #16 on: June 29, 2010, 06:00:09 pm »
White Coat Syndrome... my bp is usually higher when I am at the doctor's office.  When I check it at home it is actually pretty good. 

Since I am such a newbie with this entire experience (e.g., blood tests, taking pills every day, etc), I get very nervous about the appointment.  I have one on this coming Friday and expect the numbers to come back showing improvement but still nervous none the less.  The one thing that I like is the way my ID shows compassion and encouragement.  He knows his stuff but does not treat me like I am just 'a number'.  He takes time to make sure all of my questions have been answered fully and presents information in a clear and easy to understand language (not that I am a dummy).  He is so much better at that than the doctors that saw me in the hospital back in March.  I was lucky to get 2 minutes of their time before they ran out of the room to see the next patient. 

Being HIV Poz is nothing to take lightly but it is also nothing (these days) that should cause severe anxiety.  Its true that when appointment time draws near, I get a little nervous.  I guess its natural.

Offline leatherman

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Re: Is it just me?
« Reply #17 on: June 29, 2010, 07:18:05 pm »
He takes time to make sure all of my questions have been answered fully and presents information in a clear and easy to understand language
one way to help "force" a good or bad doctor to answer your questions, is to write them all down and go into the appt with the paper out and pen at hand to jot down the answers. ;) ;) I also list the results from my last tests, so i have that information handy. When the doc tells me my new lab results, I can knowledgeably discuss the exact change amount. I find most docs even try to read (upsidedown) my list, so that they can see what I've got ready in my lists of questions. :D

I'm the health-care customer so the doctors are there to answers my questions, not to just tell me what they want to say.
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 phildinftlaudy

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  • sweet Ann what you think babe...
Re: Is it just me?
« Reply #18 on: June 29, 2010, 07:43:52 pm »
I do almost the same thing Mike --- I ask for copies of my labs at evey ID doc visit.  I also discuss my meds (Atripla), my levels (previous and current) and any other issues (HIV related or sometimes not) with my doc

The weird thing is in an earlier post on this thread I said I don't get anxiety about going to the doc -- but a few minutes ago the courier came with my refill of meds (90 day supply) and as I looked at the giant bottle the reality and some of the associated anxiety and other emotions that come about at times with having HIV came upon me.... funny how that can happen...... :-\
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline leatherman

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Re: Is it just me?
« Reply #19 on: June 29, 2010, 08:11:16 pm »
I do almost the same thing Mike --- I ask for copies of my labs at evey ID doc visit.
I've always been pretty lucky. My only "bad" side effect from meds has been barfing. :P my BP, cholesterol, liver, lipids, etc all those numbers are (and have been) excellent.

Often my doctors will comment they wish they had numbers as good, and I tell them I'd be happy to trade the AIDS and hospitalization from PCP with them.  :D But it does put my illness into some perceptive when doctors would want to trade positions because of my good cholesterol or BP numbers.

Anywho, because of that, the good numbers, I don't track any of the other lab work. Which is also why I'm so fond of the aidsmeds graph program ;), because I really only need to track my VL and cd4 counts. Why, I've never even known or asked about that percentage number thingie in these 18 years. :D
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 HARLEY_B

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Re: Is it just me?
« Reply #20 on: July 02, 2010, 07:32:18 pm »
It's only natural to be apprehensive about the dr's appt. It's like our report card on our health and like most I do get nervous waiting for the results to be layed out for me. Last time I went they had this little stick with fine brushes on one end. Guess what that was for. Imagine my reluctance to turn my back on her then.

Offline mecch

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Re: Is it just me?
« Reply #21 on: July 03, 2010, 08:37:01 am »
I'm the health-care customer so the doctors are there to answers my questions, not to just tell me what they want to say.

We get amazingly detailed and fractured bills for a doctor's visit in Switzerland. Every little thing about a visit has a price.  I find the specialists in private practice really try to stick to the 15 minute rule.  Generalists and doctors in hospitals seem to have more time.  Really old fashioned ones see you in the examining room and then you go back to the doctors office to talk. This is so elegant, really puts the exchange on the right path, but alas seems to be disappearing.   However, if that is the price of universal care, and doctors still getting a good living, I gotta be for it.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline hjeffs

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Re: Is it just me?
« Reply #22 on: July 03, 2010, 03:34:37 pm »
So fortunate to have the same doctor for the 5 years positive. I trust her and know her quality. Yes a doctors visit is always a reminder of many things that placed me in her office but need to embrace this and move on with more care for myself itoday and in my future. Worried, I'm good at it but still need to keep things into perspective. So very grateful for all the support I have in my life including science, doctors and medicine! Be well.

 


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