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Author Topic: the down side of pretending all's well  (Read 5264 times)

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Offline Lis

  • Member
  • Posts: 595
the down side of pretending all's well
« on: October 28, 2007, 11:37:28 PM »
I have been running a fever for 2 months.. with nausea ,and vomiting and bad muscle cramps.. I have been tested for everything .. My histoplasmosis test came back equivocal.. so I retested this week..

the point of this is that I have been so strong for all around me for so long, that they think this is easy..They get mad if I cant be who I was yesterday, they call me lazy, crazy, and words that I wont post.. I manage to pay the bills, cook and buy the food, do the laundry, and clean the house, soooo why am I here .. I feel like no one loves me, of cares a thing about how I feel..

BLAH BLAH BLAH

ME
poz 1986....

Dan J.

  • Guest
Re: the down side of pretending all's well
« Reply #1 on: October 28, 2007, 11:50:13 PM »
Oh Lis,

Honey, of course they love you & you know deep inside they really do. & So do we. I know what you mean will you say they get mad at you because you can't be who you were in the past. I get the same thing. They just don't fully understand what it is like for us to LIVE with this bug. Paying the bills, cooking the food, doing the laundry and cleaning the house is a full time job in itself.

I hope you feel better REAL SOON. Hope the histo test comes back negative.

 :-*{{{{{{{{{{{{{{{{{{{LIS}}}}}}}}}}}}}} :-*

Dan

Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: the down side of pretending all's well
« Reply #2 on: October 29, 2007, 12:08:50 AM »
Sorry that you are feeling this way. I am assuming you are speaking about family. It's hard for anyone to know what we are going through unless they are going through it too. With all the tests and things, they see you going to, they should be more understanding. Hang in there.....
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 next2u

  • Member
  • Posts: 1,762
Re: the down side of pretending all's well
« Reply #3 on: October 29, 2007, 03:00:02 AM »
let us know your test results. hang in there, doing all the activities you describe takes a hell of a lot. hope your situation improves soon, ill be thinking of you.

midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline LACboi

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  • Posts: 72
  • AM member since June 2005
    • FaceBook
Re: the down side of pretending all's well
« Reply #4 on: October 29, 2007, 04:03:08 AM »
Sorry you are going through this Lis, I understand what its like.  My friends think that its just laziness or just in my head, and at times I start to believe them. I just want my friends to just understand what its like to have this so called manageable disease.  Well Lis I hope you the best with dealing with the people around you.

Take care

jeremy...

Offline heartforyou

  • Member
  • Posts: 1,105
  • I must be a survivor in many ways...
Re: the down side of pretending all's well
« Reply #5 on: October 29, 2007, 05:50:35 AM »
Oh Honey Lis,

I am so sorry you have to go through this.
It sounds so familiar...I keep on going, working, smiling, goggling down my meds every single day, wake up with PN, feel spaced, depressed etc.
And then "SOME" say : oh that's right, I forgot, you have HIV.
I know they don't mean evil, but in the end it looks like we are all "doing so fine".

Only we know that "the picture" is very different. But we are strong Li's, and that is why we learned to go on and pretend to the outsider world there is nothing wrong with us.

Thank you for writing this.
Some days I sit here and cry on my own.
I had another picture in mind when i was 31 years old.

Just try to tell someone you feel miserable form HIV after coping with it for over 20 years...o"ne should have leaned to be very good at it " and "if you lived with it for so long, it can't be that bad".

I know honey, I know.... We love you and think you are doing a great job. No doubt about it.

Be strong baby.


Love u

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

Happiness is the freedom of breathing fresh air every day.

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,975
Re: the down side of pretending all's well
« Reply #6 on: October 29, 2007, 06:19:11 AM »
Lis, I am so sorry you're going through this.  Know that we are all thinking about you.  Don't you just want to smack some people sometimes?  Anyway, I'm sending you all the good energy I can muster.  {{{{{{{{HUGS}}}}}}}}}}
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline allopathicholistic

  • Member
  • Posts: 3,258
Re: the down side of pretending all's well
« Reply #7 on: October 29, 2007, 12:16:02 PM »
My histoplasmosis test came back equivocal.. 

Hi Lis. I don't know what that means, but I send my thoughts to you over state lines ... [Hug]

Offline Hard Times

  • Member
  • Posts: 113
Re: the down side of pretending all's well
« Reply #8 on: October 29, 2007, 12:42:46 PM »
i've been there .   wait a minute , i'm still there !
i have 3 dogs to compensate for the lack of love & understanding .
& i also have the forums.  THIS IS WHAT KEEPS ME GOING.
Your Body Is What You Are.
Your Soul Is Who You Are.

Offline bear60

  • Member
  • Posts: 4,104
Re: the down side of pretending all's well
« Reply #9 on: October 29, 2007, 12:43:52 PM »
Bear hugs....(((((((Lis))))))))
Poz Bear Type in Philadelphia

Offline Jerry71

  • Member
  • Posts: 955
  • {Lexiva, Norvir, Complera} Still Breathing!!!
Re: the down side of pretending all's well
« Reply #10 on: October 29, 2007, 12:59:11 PM »
Thinking of you Lis.  :-*

Offline Buckmark

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  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
Re: the down side of pretending all's well
« Reply #11 on: October 29, 2007, 01:23:23 PM »
I have been running a fever for 2 months.. with nausea ,and vomiting and bad muscle cramps.. I have been tested for everything .. My histoplasmosis test came back equivocal.. so I retested this week..


Lis,

Not only am I terribly sorry for all this crap you are going through, but I'm concerned about the toll it may be taking on your health.

Quote
the point of this is that I have been so strong for all around me for so long, that they think this is easy..They get mad if I cant be who I was yesterday, they call me lazy, crazy, and words that I wont post.. I manage to pay the bills, cook and buy the food, do the laundry, and clean the house, soooo why am I here ...

This certainly sounds like everyone around you is not only taking you for granted, but also being downright mean (abusive?) to you.  Funny how family and friends sometimes do that.  They should be helping *you*.  The trick is, finding some way to to make them realize this, and get them up off their asses.

Quote
I feel like no one loves me, of cares a thing about how I feel..

We do!  :-*

Hugs,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Iggy

  • Member
  • Posts: 2,435
Re: the down side of pretending all's well
« Reply #12 on: October 29, 2007, 03:09:40 PM »
Lis,

I get you.  Sorry you are going through shit, but glad that you can vent it off here and know that not all of us expect you to look for the silver lining.

You are in my thoughts.

Offline MOONLIGHT1114

  • Member
  • Posts: 1,918
  • Cheech 2.2.94 - 4.23.10 We miss you so much!
Re: the down side of pretending all's well
« Reply #13 on: October 29, 2007, 03:15:34 PM »
Hi Lis~

I'm so sorry that you've been uncomfortable for so long with this fever.  I know it must be very draining.  I go through my days with a sunny disposition when sometimes I am just dying on the inside, sick and tired of being the strong one.  I wish that someone else could be strong for me and give me a day off already, lol!

Hang in there, I'm hoping for good test results for you!

~ Cindy
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline Suntropic98

  • Member
  • Posts: 146
Re: the down side of pretending all's well
« Reply #14 on: October 29, 2007, 04:06:59 PM »
I'm pissed off myself. Ever since I met this russian chick I have yet to shake this fever. I have not been able to go to the gym in a couple of weeks, I've lost 11 lbs in 14 1/2 days despite my doc saying I've gained 4 lbs since I last saw him. I missed one of the best halloween parties this past weekend. I still have the runs every other day, though it may be a SE of the anti-biotics I'm on. I am still eating mainly soups and drinking fluids with some solid food here and there. Something nasty is going around. The weekly sickness and disease report says there are a tons of things going around in my neighborhood. Hopefully I will be better soon and back at 100%. Good luck!

Offline Tim Horn

  • Member
  • Posts: 799
Re: the down side of pretending all's well
« Reply #15 on: October 29, 2007, 04:23:45 PM »
Sun:

This thread has absolutely nothing to do with you. Lis has returned to the Forums to talk about being chronically ill, and you're going on about missing one of the best Halloween parties?

Unless you have something less self-centered and more supportive to add, please stay out of this thread.

Tim Horn 

Offline Suntropic98

  • Member
  • Posts: 146
Re: the down side of pretending all's well
« Reply #16 on: October 29, 2007, 04:26:15 PM »
Sun:

This thread has absolutely nothing to do with you. Lis has returned to the Forums to talk about being chronically ill, and you're going on about missing one of the best Halloween parties?

Unless you have something less self-centered and more supportive to add, please stay out of this thread.

Tim Horn 

I told her good luck. What more do I have to do, Tim?

Offline Lis

  • Member
  • Posts: 595
Re: the down side of pretending all's well
« Reply #17 on: October 29, 2007, 05:34:42 PM »
Thank you all for your kind words... This life is what it is, and none of us get to choose where it ends...

This is yet another step in evolvement!
poz 1986....

Offline newt

  • Member
  • Posts: 3,885
  • the one and original newt
Re: the down side of pretending all's well
« Reply #18 on: October 29, 2007, 05:52:21 PM »
bugger

when do people in your house get to do chores? However, it ain't that simple, I know. I sincerely hope in one way it is histo cos then at least it can be treated. But sincerely also don't cos it's a nasty, and the side effects of the main med used to treat it are the same as well, now..

bet that's cheered you up no end.

Histo got a namecheck from Johnny Cash in the song "Beans for Breakfast" and Bob Dylan was hospitalized by it in 1997, and cancelled his concerts in the United Kingdom and Switzerland. So at least you are in famous company perhaps.

strap on the bass, I wish I could, I wish you could, I wish you could play bass, smile and vacuum at the same time, can't play bass for toffee, me

I thought about some humorous phrase or saying but decided against, just gonna move the GET ANGRY meter up a notch.

>big hug< get well soon

- matt

Now playing: Ramones, All's Quiet On The Eastern Front
"The object is to be a well patient, not a good patient"

Offline Lis

  • Member
  • Posts: 595
Re: the down side of pretending all's well
« Reply #19 on: October 29, 2007, 05:57:02 PM »
newt..

LOL at "beans for breakfast"

it is what it is.. we dint get to pick what we get..

love you dear man.. and where the hell is the poetry you promised?
poz 1986....

Offline newt

  • Member
  • Posts: 3,885
  • the one and original newt
Re: the down side of pretending all's well
« Reply #20 on: October 29, 2007, 06:07:21 PM »
bugger no 2...

www.poetropical.co.uk

the next poem I write, or if I finish 'Sabonaan' bantabami' (nearly is, this epic), I reckon owe you a dedication

There, outed as a poet.

- matt


Edited: poet can't spell...
« Last Edit: October 29, 2007, 06:12:59 PM by newt »
"The object is to be a well patient, not a good patient"

Offline Lis

  • Member
  • Posts: 595
Re: the down side of pretending all's well
« Reply #21 on: October 29, 2007, 06:09:13 PM »
PLEASE.. you 're writing is a beautiful thing!!!


thanks.....
poz 1986....

Offline pozguy75

  • Member
  • Posts: 1,239
    • POZitively Speaking
Re: the down side of pretending all's well
« Reply #22 on: October 29, 2007, 06:32:42 PM »
Hey Lis...wish you were closer or I was...I would make you a really good HOT vat of chicken soup...cause not only will my soup cure what ails you, but it's also good for the soul!!

I love you Lis, though I probably don't say it often enough, but I do...and I think of you quite a bit!

Love ya babe!
Jeromy
Dx 2005
ATRIPLA

Offline AlanBama

  • Member
  • Posts: 3,641
  • Alabama: the 'other' 3rd World Country!
Re: the down side of pretending all's well
« Reply #23 on: October 29, 2007, 06:42:11 PM »
Oh honey, I'm sorry you are having such a hard time.....

I love you.

(((((HUGS)))))

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 RapidRod

  • Member
  • Posts: 15,288
Re: the down side of pretending all's well
« Reply #24 on: October 29, 2007, 08:32:28 PM »
Lis, let me know how your histo test comes out. I can tell you all about that damn fungal disease.

Offline Jody

  • Member
  • Posts: 1,829
Re: the down side of pretending all's well
« Reply #25 on: October 29, 2007, 08:53:13 PM »
Dear Lis...If you take time off for YOU then the chores will get done by someone else or hey- they won't get done!!!  So be it.

Take care of you, have that chicken soup, keep as much food in you as possible, get some REST and take care of you.  You're worth it!!!  And gently but firmly remind family members of that Grateful Dead song if heaven forbid anything serious should happen..." You're gonna miss me when I'm gone, gone, gone!!!"

Jody  :)

 
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline BirdBear718

  • Member
  • Posts: 105
Re: the down side of pretending all's well
« Reply #26 on: October 29, 2007, 09:39:50 PM »
Know that you don't have to be "strong" for your friends and family.
Let them help you.  Let them see the real you -- the real pain you are experiencing, the real exhaustion you are going through.
Let them see.
Let them see your tear, and hear your cries.
It doesn't make you weak for letting others in.  You do not have to be strong for anyone but yourself -- and even you need a day off.

The worse that could happen is that they don't get it and continue on as normal. 
The best that could happen is that they help you and maybe begin to see what you need and what you are going through.

Offline Nancy

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    • The Human Solution International
Re: the down side of pretending all's well
« Reply #27 on: October 30, 2007, 11:57:04 PM »
Lis,

Never stop believing that we all love you!!!  Your a very special person.  Go on strike!!! 

Love you,

Nancy
Deborah Cadigan-Little
Diagnosed Oct 1993
Member since Sept 2002
Meds Dec 2003

Offline CowboyPOZ

  • Member
  • Posts: 61
Re: the down side of pretending all's well
« Reply #28 on: October 31, 2007, 12:57:17 PM »
Here is a hug to try and help Liz. Chin up girl and know you have a lot of good people saying an extra prayer for you toay.
Okie Cowboy

Offline Terry

  • Member
  • Posts: 339
  • 7/13/82 Infected
Re: the down side of pretending all's well
« Reply #29 on: October 31, 2007, 09:18:30 PM »
Lis Honey,

Hurry and get well so you can get back to work taking care of everyone else.
He. He, He. I know that Iím evil...

So sorry that you have been feeling so ill for so very long a time. But hang in there sweet thing. Sooner or later itís got to get better. Hopefully sooner!



Offline Life

  • Member
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  • Member 2005
Re: the down side of pretending all's well
« Reply #30 on: October 31, 2007, 09:35:20 PM »
Lis, 

Find that power again...  Its ok to take a break from making every one elses world beautiful...  Always leave them wanting more...  ;)

Eric

Offline Terry

  • Member
  • Posts: 339
  • 7/13/82 Infected
Re: the down side of pretending all's well
« Reply #31 on: November 04, 2007, 08:57:45 PM »


Lis, I know my bumping this thread will piss you off. (GFYourself) But after speaking with you the other night I feel that those that know and love you, need to know that youíre really not doing that well right now.

Please let me/and/others know what the diagnosis is to your problem after you get to the hospital. Youíre such an asshole! ;)



Offline Lis

  • Member
  • Posts: 595
Re: the down side of pretending all's well
« Reply #32 on: November 04, 2007, 10:03:28 PM »
takes an asshole to know an asshole!!!!


It will be what it is I know I cryed on the phone but your still a bastard  (LOL)
poz 1986....

Offline david25luvit

  • Member
  • Posts: 1,409
  • Member since March 2005
Re: the down side of pretending all's well
« Reply #33 on: November 05, 2007, 09:19:21 AM »
Amen Sister..........
Hope you feel better soon.... :-*
In Memory of
Raymond David McRae III
Nov. 25, 1972- Oct. 15, 2004
I miss him terribly..........

Offline aztecan

  • Member
  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: the down side of pretending all's well
« Reply #34 on: November 05, 2007, 09:55:26 AM »
Hey Lis,

Damn, histo? I hope not. Well, like Newt said, at least then you would know how to treat it.

Let the dishes sit and laundry wait. Take some time, rest, recoup and let the family fend for themselves.

Hope you feel better.

HUGS,

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

 


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