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Author Topic: Disappointed/scared  (Read 2723 times)

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Offline Dragonette

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« on: April 25, 2007, 08:17:48 AM »
Today, I was supposed to see the doctor and the gynocologist at the hospital. I have been very anxious about my health, my last count 2 months or so ago was 180 cd4. I "feel" neuropathy. It's also been well over a year since my lasy gynecological examination. More importantly, my BF would have come with me, for the first time, to hear about the realities of my disease (I refrain from talking about my fears with him because I don't want to overdo it). The appointment for the doctors was made in Feburary or so, and yesterday a letter arrived giving me a new appointment. Of course the new one was on a day that I am absolutely busy with a workshop and can't attend. I had a meeting with my social worker so I went there and she called the nurse who makes the appointment, and he complained that the last time I had an appointment and never showed up. That is SO not true. I did have to miss just one appointment out of the numerous ones I had this year, and I called a week in advance to cancel (and he was very pissed). What can I do? My schedule and work is the most flexible possible for an employed person and I don't have a family so I am almost always available, but even I sometimes have things I can't postpone. I tried to convey that to the social worker, that both me and my BF have a life and that I have a lot of worries about HIV and the meds and to postpone my appointment for 3 weeks without even consulting me on the new date (in which I am unavailable) is tough on me, and we ended in an argument, after which I burst out crying, and only THEN they sorted the thing out and she took my side. She said it is a big problem in the hospital, they just don't see that side of the patient, or in her words, "they care mostly about the numbers".
I need to talk to someone about the strange feelings I have in my feet and my fear of lipo, I need to know my results. I know that the doctor would have probabaly referred me to a neaurologist and that itself would entail 2 months or more waiting, but at least I managed to suffocate my worries (who am I kidding, I slept on the floor in the last 2 nights because I was so restless in the bed) until the appointment, which was cancelled. And tomorrow I have to open a conference and talk in front of people, I feel so useless, so unready to do that, all I want to do is get into bed and cry and cry, and all they can tell me is, "you WILL pay a price for taking those meds, we just don't know what exactly and when".
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline Andy Velez

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Re: Disappointed/scared
« Reply #1 on: April 25, 2007, 08:35:42 AM »
A lot to be handling, Dragonette....

So how did the issue of an appointment get handled? Are you seeing your doctor today?

I understand that you don't want to overburden your bf with your concerns, but I'm wondering how much conversation do you have at all about HIV-related issues. I mean, after all it is an important part of your life together.

Fortunately feelings aren't facts and you will in all likelihood do well in opening the conference tomorrow which you mentioned. Just keep things as simple as possible.

Say more if you will when you have the time...

Andy Velez

Offline Dragonette

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Re: Disappointed/scared
« Reply #2 on: April 25, 2007, 09:06:56 AM »
My appointment was postpone to 9/5 so not that far, it's just the neuropathy thing that worries me.

About my BF, we do talk about HIV, the social aspects, insurance, stigmatization. But I try not to burden him with my fears, because I feel that I don't know enough (although the more I read the forum the more I know) and that I don't have a clear view of all the implications and the future, so i want him to hear it from someone objective.

My psychologist said something very true: "people here (in Europe) are mostly willing to accept people with HIV, as part of diversity, as long as you are not ill, or look ill"

I feel sometimes that I talk about HIV a good part of the day (with myself mostly). I mention it to my BF so often. He has the alarm for my drugs on his mobile too, but I don't want to overwhelm him.

Thanks Andy....  :-*  :'(
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline xyahka

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Re: Disappointed/scared
« Reply #3 on: April 25, 2007, 09:29:26 AM »
Hi... well...  i would say many things... but i will start by saying a single one... "I all will turn out just fine, you will see!"

I know how it is to be waiting, and to be misstreated by hospital people and to have other problems to solve while you have to still deal with "this".

If it is about troubles, we all have our share of it, i for exemple will just get to know my FIRST cd4 count two months after i was diagnosed first, i will not have viral load count, cause here in latin america is too expensive. I am without meds so far but with a long persistent diarrhoea (over a month). My first appointment with Dr she told me due to my symptoms she though my CD4 to be below 200 and that i was already into aids phase of the illness and that i was already risking my life..... The result, i almost die same moment. It is actually silly since she does not have any numbers...she just spoke out of nothing. Then i understood something you have to be aware of my friend... None can put themselves in our feet. The best you can do is look after yourself and also be patient... this too shall pass like every night that has come before it

Don't expect much from them. and that means don't take their attitudes in a personal way, they just don't know what you are dealing with. My approach now when they behave like that is... "ok, lets negotiate..." and it is sometimes good that they behave that way, because they are treating you like a normal person usually they are assholes with everybody ;) so in one hand that makes you stronger. In other hand i am always ready to stop them and tell them "are you discriminating me? you better check out your words!" because some times the way they treat us is a way to discriminate us, we are ill but we are humans and humans have the RIGHT of being respected and i will make sure my rights will be respected too. I would suggest you balance both things if possible, people in the world need to know we are tolerant and are able to deal with them, but that does not mean we have to suffer by their attitudes, their words, until make us cry.... No, we have the RIGHT of being respected. It is not a gift, it is a RIGHT.

Regarding your bf, i know you worry about this and about telling him... but i would suggest you are very sincere with him, it is important he understand what is happening to you, that will strenght in most of the cases your relationship and he will understand why sometimes you react in different ways than before. If you both need help to deal with this (counsellor or something like that) it is a good idea to find some help. In my case i am seeing a psychologist once per week or so, and i advised my mother to do so... because for both of us this is yet a big weight after my recent diagnosis.

Hope i somehow could give you a bit of energy for going throught this, Medicine people are not always caring or careful... perhaps they have already seeing so much that their feelings are cold now.
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline Dragonette

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Re: Disappointed/scared
« Reply #4 on: April 25, 2007, 09:43:03 AM »
Actually, that was a very dramatic rant, and after I posted I kind of cleared the poison.

There was a different way to feel:
I could have written how responsive the social worker was to my crying, and that she made many notes to discuss with the staff about these kind of behavior.

Also I am not worried about my counts because unknown to them I tested at home (was forced to for the insurance) and I am back at 224, which for me is 30% so not that bad.

I somehow forgot that in my preoccupation with the unfairness of it all, cos I have been building up the anxiety about the neuropathy and the performance tomorrow (hate standing up in front of a crowd talking about things I am not fully knowledgable of), and I wanted the doctor to calm me down, but he was not there for that, today.

"You can't always get what you want but if you try sometime you may just get what you need".

That WAS a rant. I have the "red flag" up as well, so please excuse the dramatization.
I do feel better now though........

Hey, try this meditation, I think you will like it.


And thank you for your help!
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline Dragonette

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Re: Disappointed/scared
« Reply #5 on: April 25, 2007, 09:52:16 AM »
One more thing:

Some doctors say the wierdest stuff. How can she know your Cd4, on the basis of diaearrah? How insensitive!

I guess it's our job to remind us that we - and they - are still human. The uncertainy is the worst of all. Let them try to live with it. And it doesn't matter if the uncertainty is HIV-related or not. Every person will have to face that sooner or later.

I also still feel that some medical staff in the field judge, "how could you get HIV in this day and age".

We have to appeal to their humanity I guess.
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline milker

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Re: Disappointed/scared
« Reply #6 on: April 25, 2007, 09:54:44 AM »
{{{{{ Dragonette }}}}}

The good thing in this story is that they're not rushing to get you to see the doctor, so the results shouldn't be too bad :)

mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline Dragonette

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Re: Disappointed/scared
« Reply #7 on: April 25, 2007, 01:37:11 PM »
you're right I hadn't throught of that  :)

I am more phobic re neuropathy and side effects at the mo. But having had my rant, i do acknowledge that while i am nervous about a stupid presentation, and ticked off that i missed an appointment, millions are dying plain and simple. i am very priviliged to be treated here (still scared s***less of lipo & neuro but feeling lucky nonetheless).
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline Basquo

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Re: Disappointed/scared
« Reply #8 on: April 25, 2007, 09:10:07 PM »
I was in a large meeting today where people were being called on randomly to speak about different topics, and I was almost falling asleep while grumbling about how folks were droning on and on, and then I was called on to speak!  Funny how when it's all of the sudden my turn, I can go on and on and on...

...and my point is that I'm sending good-speaking vibes your way. Can you feel them, all the way across the ocean? You'll do fine!

 8) ;D :-*

Offline aztecan

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Re: Disappointed/scared
« Reply #9 on: April 25, 2007, 11:15:17 PM »
Hey Dragonette,

I'm glad you clarified you live in Europe. When I was reading and saw they moved your appointment to 9/5, at first I thought you meant Sept. 5.

Whew! :o

Doctors are a pain in the tuckus sometimes.

Regarding your fears of lipo and PN, how long have you been taking these meds? Just wondering.


"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline ndrew

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Re: Disappointed/scared
« Reply #10 on: April 26, 2007, 12:38:53 AM »
Hi there,

Gosh, you would forget that these medical folk are there to provide a service for humanity.  Causing stress seems like fly in the face of the Hippocratic oath.  Anyway, I don't think you should worry about lipo, I don't.  Take every day gently and with care (for the self)!

Luv and support,

Offline Dragonette

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Re: Disappointed/scared
« Reply #11 on: April 27, 2007, 03:43:54 PM »
I can't tell you how nice it is to come back from 2 days off the computer and see such heatwarming responses. Really really awsome.

My presentation went well........... I kept the words "keep it simple" as a mantra.

About living in Europe. My situation is a bit more complex than that. I do live there and get treated there, but I am actually employed without any social benefits (social security, unemployment, maternity leave, pension etc - i am not elligible for any of them), and am insured through an agreement of my work in a private company. I am an EU citizen but not a resident (wierd thing I know) which has implications insofar as the ability to stay here is concerned (can stay legally, can work; cannot get any aid from the country if I am too sick to work or can't find another job after this one). At the same time my residency in my native country is about to be revoked (I applied for an extension but I don't know if it will be granted) due to prolonged absence. What this means is that I will be "kicked off" the National Health scheme there and also not be elligible for any wellfare. Right now I am doing very well treatment wise, as long as I am employed and insured in both countries, but looking ahead there are some concerns. Moreover, my BF is not Dutch and we don't know if he can stay here (legally he can, technically and personally we don't know). I might have to relocate to another EU country. It's all very uncertain, and basically i can foresee the future until september but not much further than that. In september, my BF's contract is done, AND (unless extension is accepted) I lose my home country residency status. But like I said, I AM very priviliged at the moment. The instability of it all though is sometimes hard to take in. I will probably post more about this as it continues to unravel.

In the meantime  :-*..................

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

Offline BT65

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Re: Disappointed/scared
« Reply #12 on: April 27, 2007, 10:33:52 PM »
Just take things a day, an hour, a minute at a time and keep it simple.  If you just do your best at each step, things will work out o.k.  Keep us posted! :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline heartforyou

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Re: Disappointed/scared
« Reply #13 on: April 28, 2007, 12:50:10 PM »

Now it is my turn to send you healing.
I know some issues seem impossible to face.


Big hugs


Diagnosed in 1987 and still kicking
Kivexa (Epzicom),Tivicay once daily.

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Happiness is the freedom of breathing fresh air every day.

Offline RobT

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Re: Disappointed/scared
« Reply #14 on: April 28, 2007, 12:52:35 PM »
Take things one at a time. They will get batter.


Current meds: Atripla
VL: undetectable
CD4: 630


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