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Author Topic: You know you have a serious disease when.......  (Read 3638 times)

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Offline Delby

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  • Posts: 112
You know you have a serious disease when.......
« on: February 08, 2009, 06:05:14 AM »
1. You hear people telling you 'just be/think positive' over a million times!

2. You hear people telling you 'you could step out of your house tomorrow and get hit by a bus' - has anyone ever known anyone thats been hit by a bus? I certainly haven't

3. You know more names of drugs, blood tests and results than one should ever know in a lifetime or a 1000 lifetime's.

4. People tell you over and over again 'none of us know when our time is up'

5. Your heart races and you become angry and agitated when someone cough's or sneezes near you in a confined area such as a Cinema.

6. You carry around a hand sanitizer spray in your car, at work, going out, when you go to sleep (ok maybe thats a little excessive)

7. Your friends after a while dont know what to say to you anymore. How many pep talks and support can they give before they run out of words and energy.

8. When you feel so alone, isolated and frightened beyond words.

9. Where you can sit in a room with everyone laughing, smiling, joking with what seems like not a care in the world, and feel completely different, alone and envious of having a 'carefree' existence.

10. When your farts smell so putrid from all the medication.

11. When people tell you 'they are developing new treatments all the time, everyday'. Completely oblivous to how long it takes for one drug to be approved and licensed.

12. When you know more about your illness than your doctor.

13. When you correct your doctor about the correct pronunciation of a drug.

Please feel free to add.........(PS this is meant to a post with a bit of humour)

« Last Edit: February 08, 2009, 06:07:59 AM by Delby »

Offline Ann

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Re: You know you have a serious disease when.......
« Reply #1 on: February 08, 2009, 06:39:04 AM »

2. You hear people telling you 'you could step out of your house tomorrow and get hit by a bus' - has anyone ever known anyone thats been hit by a bus? I certainly haven't


I have. OK, so maybe I didn't know the guy personally, but...

It was sometime last year, on a day when I was in Liverpool for clinic. That morning a labourer accidentally dropped a bag of cement from the top of some scaffolding he was working on. He shouted the alarm down to street level where some of his workmates were standing. One of the lads stepped backward to avoid having the bag of cement land on him.... and right into the path of a bus. Yes, he was killed.

So while people are usually referring to a "proverbial" bus, it does actually happen now and then.

And yes, I did think about how people say that about getting hit by a bus when I heard the news later in the day, especially since I'd been fretting about my numbers that day.

Oh, and I've got one to add...

14. When people, instead of greeting you with a smile and "how's it going?", they lower their voice, put their best concerned/compassionate face on and say in grave, reverential tones... "how ARE you?" like you're about to keel over at any second.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline hikeandbikedude

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  • June 2009
Re: You know you have a serious disease when.......
« Reply #2 on: February 08, 2009, 07:16:27 AM »
Re: #5 - people who come to work sick really piss me off these days. I just got a cold with a nasty cough a couple of weeks ago ... and I found myself resenting the co-worker who faithfully came to work even though she was sick - and even though we have a flexible workplace that makes it easy to work from home if that's what you need to do.

I have no clue whether she gave me the crud - but it still ticks me off that people insist on coming to work when they obviously should be at home.

Signed,

Bitter, Party of One
"In the long run, we shape our lives, and we shape ourselves. The process never ends until we die. And the choices we make are ultimately our responsibility." - Eleanor Roosevelt

Offline camille07

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Re: You know you have a serious disease when.......
« Reply #3 on: February 08, 2009, 07:27:29 AM »
15.  People look at you, as if you're crazy, if you say you are going back to school or if you have anything else that invests in your future.

Great list.

Camms

Offline lonewolf

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Re: You know you have a serious disease when.......
« Reply #4 on: February 08, 2009, 11:21:40 AM »
Right now, I have 4 different types of skin rash going on.  Heals,  then comes back,  typical dry skin, complicated by HIV.   Anyway,   got this comment the other day.

16.   Gee, you look like you have AIDS or something.

Small town paranoia, but, gee.  

Bruce

PS.  BTW,  Ann,  """ ...how ARE you?"""   (lol)
« Last Edit: February 08, 2009, 11:23:11 AM by lonewolf »
"To all within the sound of my voice, I appeal: Learn with me the lessons of history and of grace, so my children will not be afraid to say the word “AIDS” when I am gone. Then, their children and yours may not need to whisper it at all."  Mary Fisher

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: You know you have a serious disease when.......
« Reply #5 on: February 08, 2009, 01:11:52 PM »
OK, here's one:

17. When someone comes up to you in the shower at the gym, pokes your buffalo hump and says something like, "What's up with that. You really should do something about that. "

HUGS,

Mark

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

Offline Lis

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Re: You know you have a serious disease when.......
« Reply #6 on: February 08, 2009, 02:14:09 PM »
3, 9, 10, 12

I thought it was just me...... HEHEHE ;D
poz 1986....

Offline BT65

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Re: You know you have a serious disease when.......
« Reply #7 on: February 08, 2009, 05:01:02 PM »
18.  You have to go on disability because of it.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: You know you have a serious disease when.......
« Reply #8 on: February 08, 2009, 07:04:48 PM »

PS.  BTW,  Ann,  """ ...how ARE you?"""   (lol)


About to keel over, thank you very much! ;D
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline positively_me

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Re: You know you have a serious disease when.......
« Reply #9 on: February 08, 2009, 10:21:01 PM »
19. You see a non-ID doctor at urgent care for something non-hiv related and their parting advice to you is, "People with hiv are living normal lives now thanks to the medicines out there."

Define "normal" in the first place!!!
Great minds discuss ideas; Average minds discuss events; Small minds discuss people.  - Eleanor Roosevelt

Offline LTSurviver

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  • LTS since 1987. LTNP until 2008.
Re: You know you have a serious disease when.......
« Reply #10 on: February 08, 2009, 10:25:57 PM »
Many things in this list are another reason why I tell no one but my family and SOs.  Thankfully none of them have ever looked at me or treated me differently. :)

But I did get all of this and a lot more way back in my first year (1987-88).  I was open about this to everyone then.  BIG mistake.  Learned my lesson, moved and never was open about it again.

Offline next2u

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Re: You know you have a serious disease when.......
« Reply #11 on: February 08, 2009, 10:31:04 PM »
20. when an asshole who passes for a dr says "i can't imagine how hard it is being hiv positive." esp when you are only there for a pill and want to get back to your sunday movie. thanks for reminding me again dr asswipe.
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 PeteNYNJ

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    • Dance for Me, Puppets
Re: You know you have a serious disease when.......
« Reply #12 on: February 08, 2009, 10:47:15 PM »
21. a 33 year old "healthy" male is so worried about not having healthcare coverage due to being out of work.

Edited because my spelling is gross lately
« Last Edit: February 09, 2009, 01:20:00 AM by PeteNYNJ »

Offline Mouse

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Re: You know you have a serious disease when.......
« Reply #13 on: February 09, 2009, 12:43:17 AM »
Quote
14. When people, instead of greeting you with a smile and "how's it going?", they lower their voice, put their best concerned/compassionate face on and say in grave, reverential tones... "how ARE you?" like you're about to keel over at any second.


HAHAHA. YES. The second I read that I was able to picture in my mind the billions of people that have done that to me.



I hate being told that people are "sorry". That's such a stupid thing to say to someone after they tell you they are HIV+ or, really, have any sort of life threatening ailment. I really hate that.

I also hate being told how brave I am for ~staying strong~ or whatever they feel sounds the most sincere to say at the moment to me. I don't mean to sound so cynical, but whenever people say something like that to me all I can think about is how contrived and patronizing it is.

Offline woodshere

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  • ain't no shame in my game
Re: You know you have a serious disease when.......
« Reply #14 on: February 09, 2009, 08:57:27 AM »
2. You hear people telling you 'you could step out of your house tomorrow and get hit by a bus' - has anyone ever known anyone thats been hit by a bus? I certainly haven't

I was.  While on vacation in Denver I was reading a map on a brick sidewalk that led to a brick street, not paying any attention to my surroundings and boom a moving bus whizzed by.  Fortunately for me the sideview mirror clipped my Ray Ban Aviator Sunglasses.  Of course I wasn't concerned about how I was or the panic around me only my glasses which were some 20 ft away, still in perfect condition. I have been a fan of Ray Ban ever since!

#22:  You have a note on a bright orange card posted on your bathroom mirror that says, "TAKE YOUR MEDS", even though you have been doing it for almost 3 years and still forget.
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline David_CA

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Re: You know you have a serious disease when.......
« Reply #15 on: February 09, 2009, 10:02:51 AM »
#23 ( I think)  You have more Dr. appointments, take more prescription meds, and have more in medical expenses than your 64 year old mother or father.  Your retirement age parents have fewer health issues than you do. 

As for what others say when they find out that we're HIV+... I'm not sure what we want them to say.  I think that they often say the things they do not to be insulting, but because if they didn't, there'd just be silence.  "Oh, I'm sorry", "How are you doing?", etc are pretty much the best they can say.  If somebody told me that they just had a death in the family, I'd also say "I'm sorry". 
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline jennynyc7

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  • Posts: 146
Re: You know you have a serious disease when.......
« Reply #16 on: February 09, 2009, 10:15:33 AM »
Great post.

I particularly relate to #9. While I am generally optimistic I still get very jealous of people who are illness free. Not just HIV. For instance, my mom has heart problems and knows she could have a heart attack at any time. I am sure she feels the same as I (we) do. Just uncertainty. I remember when I was first diagnosed almost a year ago I thought I would never think the same. I thought I would wake up every morning the way you do after having your heart broken....you know how when you open your eyes for the first time in the morning and for a split second everything is seemingly alright but then you realize you don't have much to look forward to. It has gotten 90% better over the past year and I can now wake up in the morning with a bright outlook on life. Now instead of a brick on my shoulders, it is more like a pebble.
12/24/07-infected
1/3/08-ARS began
2/12/08-diagnosed
Initial Vl=99000
CD4=585
2/14/08-began Truvada/Reyataz/Norvir
3/01/08=Swapped Reyataz for Viramune
5/1/08:     vl= undetectable
                cd4=1250
10/24/08:  vl=undetectable
                cd4=1172 (55%)

12/4/08:    vl=254 (hopefully just a small blip)
                cd4=1234

Offline newt

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Re: You know you have a serious disease when.......
« Reply #17 on: February 09, 2009, 05:16:35 PM »
Quote
"how ARE you?"

I am so getting a t-shirt with that on

worse is "Is it just pneumonia or, y'know, PNEUMONIA?" << this from a doctor friend....
"The object is to be a well patient, not a good patient"

Offline red_Dragon888

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Re: You know you have a serious disease when.......
« Reply #18 on: February 09, 2009, 06:44:41 PM »
 :D 

10. When your farts smell so putrid from all the medication.

You may have a parasite and need to take antibiotics. 

24.  When some ass-wipe at work says to you in your face, "I probably get Aids just standing near a person who has it," and all you're thinking of is punching his lights out.


25.  When you need to take medication for the side effects of your medication.

26.  When every new bumb, spot or dark blemish anywhere on you skin makes you think that you have KS.
« Last Edit: February 09, 2009, 07:04:33 PM by red_Dragon888 »
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

“Neither look forward where there is doubt nor backward where there is regret. Look inward and ask not if there is anything o

Offline red_Dragon888

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Re: You know you have a serious disease when.......
« Reply #19 on: February 09, 2009, 06:49:23 PM »
27.  Sex becomes a thinking man's or woman's game. 

28.  When you shoot sperm and your negative partner jumps out of bed as if you lite it on fire.
« Last Edit: February 09, 2009, 07:04:46 PM by red_Dragon888 »
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

“Neither look forward where there is doubt nor backward where there is regret. Look inward and ask not if there is anything o

Offline megasept

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  • Steven here...
Re: You know you have a serious disease when.......
« Reply #20 on: February 09, 2009, 07:03:14 PM »
How about when your calendar shows a medical appointment notation but you can't remember for the life of you what this new specialist might be seeing you for?

 8) -megasept




Offline red_Dragon888

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Re: You know you have a serious disease when.......
« Reply #21 on: February 09, 2009, 07:06:25 PM »
How about when your calendar shows a medical appointment notation but you can't remember for the life of you what this new specialist might be seeing you for?

 8) -megasept




30.  or you just don't care cause it seems like every week you are seeing someboby for something.
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

“Neither look forward where there is doubt nor backward where there is regret. Look inward and ask not if there is anything o

Offline planonstaying

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Re: You know you have a serious disease when.......
« Reply #22 on: February 09, 2009, 08:23:06 PM »
28. When everyone ignores the 4 hepatomas on your arms and hands  the size of half dollars because  they couldn't get a hit for those 6 vials of blood  last week
29 You call out from work because   your neuropathy is so bad  5 minutes after you put on shoes it feels like someone pored lighter fluid and acid on the soles of your feet then torched it up and started slapping them with a 2 by 4 so, you sit at home with your feet hanging off the couch  because  anything touching them  sets them off. Conversely when they dont hurt  you are grateful you can  put your shoes on that day.

30.  You are grateful to be alive because you know how what an ephemeral thing life  and how random death is.
If someone tells you  potential consequences of a behavior  it  doesn't  mean they jude you or mit    they may just give a shit about you

Offline denb45

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Re: You know you have a serious disease when.......
« Reply #23 on: February 09, 2009, 08:42:32 PM »


16.   Gee, you look like you have AIDS or something.



When a complete and total stranger, sits by you in a HIV clinic and SAYS THIS TO YOU:
"Do you know you can get a FREE facial filler, if you cannot afford to pay for it on your own"
then, you run for the restroom mirror, just to see how bad your facial lipo really looks  ???
« Last Edit: February 09, 2009, 08:45:10 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline red_Dragon888

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Re: You know you have a serious disease when.......
« Reply #24 on: February 09, 2009, 09:56:57 PM »
34.  When you think that dating other poz men is a good just to find that some are just idiots like the negative dicks you'd dated.
« Last Edit: February 11, 2009, 07:29:34 AM by red_Dragon888 »
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

“Neither look forward where there is doubt nor backward where there is regret. Look inward and ask not if there is anything o

Offline red_Dragon888

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Re: You know you have a serious disease when.......
« Reply #25 on: February 09, 2009, 10:00:25 PM »
35.  When the word "positive" just isn't positive anymore.
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

“Neither look forward where there is doubt nor backward where there is regret. Look inward and ask not if there is anything o

 


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