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Author Topic: so much for family support...  (Read 7176 times)

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Offline tryingforhope

  • Member
  • Posts: 64
so much for family support...
« on: November 10, 2006, 09:20:53 pm »
so here I am visiting with my parents until Thanksgiving. I am in HELL. First I get the stomach virus and end up in the ER dehydrated and pregnant. Then today as my sister is leaving I get to hear all about how she is in the grieving stage for me since I am dying. HUH????????? Then my mother chimes in as I am trying to defend myself that a chest congestion will kill me before I see my two year old graduate high school.
SIGH
I am having a hard enough time coming to terms with this disease and my own fear of dying. It seems just when I talk myself into the fact that I will live to sit on the porch and watch sunsets at 70, I get knocked back down to I better make my funeral arrangements.

Offline RapidRod

  • Member
  • Posts: 15,288
Re: so much for family support...
« Reply #1 on: November 10, 2006, 09:45:58 pm »
tryingforhope, oh do you have some informing to do. I've outlived a lot of the guys and gals that I graduated with. I can't picture myself going as of yet, unless a plane lands on my house or I have an auto accident. They'll see as the years go by. Just hang in there. You could make them feel real bad. Go to the nearest funeral home and get some brochures and leave them on the kitchen table.  ;)

Offline Queen Tokelove

  • Member
  • Posts: 6,031
  • Smokey the Smurf
Re: so much for family support...
« Reply #2 on: November 10, 2006, 09:50:10 pm »
Trying,

I definitely feel where you are coming from. Even though I no longer speak with my family, I know because of all the hell some members put me through that they are just sitting back waiting for me to kick the bucket....Not!...I'm too much of a bitch to die....Don't stress it, you will be here for a long time....Don't give in to the naysayers...
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

Offline skeebo1969

  • Member
  • Posts: 5,931
Re: so much for family support...
« Reply #3 on: November 10, 2006, 09:56:20 pm »



     Just prove them wrong!  I hope you get to feeling better.
I despise the song Love is in the Air, you should too.

Offline wellington

  • Member
  • Posts: 511
  • Don't sweat the little things.
Re: so much for family support...
« Reply #4 on: November 10, 2006, 10:03:54 pm »
Of course, you know better how you feel and cope than does your family. It's unfortunate that they cannot see clearly enough to offer you the support that you deserve, but that should not drag you down. If they were my family, I'd enjoy playing 'em like a harp. As mean as that might be, it seems to be what they're asking of you.

Offline DanielMark

  • Member
  • Posts: 1,475
Re: so much for family support...
« Reply #5 on: November 11, 2006, 06:33:38 am »
Hi Trying,

I read your post with interest because like you, my relatives (I don't consider them family anymore) are unable to see past their own thoughts and ideas about me, HIV, me being Gay or anything else. Basically, they don't know me at all.

The only remedy I've been able to come up with is to keep away from them, and them away from me. I have  close friends who I consider my family and that suits me just fine. Rather than walk back into that nest of dysfunction, I call my mother once a week just to keep in touch. Thing is, she usually has some story about the latest bad news which tells me in my heart of hearts distancing myself from them was the best move I ever made.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Oh501sguy

  • Member
  • Posts: 113
Re: so much for family support...
« Reply #6 on: November 11, 2006, 07:37:31 am »
Family support?  It never existed in my world.  I have be "casted out" by all of them.  It seemed like I committed
a crime because I was gay.  I never even got a chance to tell them I was HIV poz because by that time they had already made their choices I was not part of the family.  Both of my parents are now deceased as well as all of my aunt and uncles.  I have many cousins who I do not know anymore.  I have one brother and we don't speak.  My mother passed away on Thanksgiving of last year and I did not get one sympathy card or phone call.  Yes, it hurts, but I get over it.  I also fear ending up old and alone.  But I am trying to expand my social network.  Thats part of why I am on this board. My family was never there for me.  I don't need them now.  I'm doing better without them.  I'm finding my friends are much more important than family.

Offline IzPoz

  • Member
  • Posts: 332
  • God, grant me the serenity...
Re: so much for family support...
« Reply #7 on: November 11, 2006, 10:19:59 am »
Trying,

It's difficult to be in your shoes, and I can certainly relate.  My family pretty much did the same thing when my husband was diagnosed with AIDS.  The first year, his OWN family were talking to me about making funeral arrangements for him.  Although I was diagnosed with HIV a couple weeks after him, they were concerned about making arrangements for him since he was more advanced.

After a while, he would be more healthy than they were, so they eventually stopped talking about stuff like that.  I never got mad at them, never held it against them, because, honestly, they can't help but be ignorant in the unknown.  So, you have to educate them, and show them that HIV is NOT a death certificate.  Assure them that you will be here for many years to come, and hell, probably outlive everyone of them.

Don't let them get you down, and more imporantly, don't let it affect your already delicate feelings (pregnancy hormones... )... let it go, and continue to hug them, love them, and forgive them of their ignorance of HIV.

You can show them stories, bring them to this site, and show them how many people have survived well over 20 years after diagnosis, and continue to live strongly.

Myself, I was diagnosed for my first Mother's Day in 94.  I continue to be asymptomatic, CD4 count over 420, and undetectable Viral Load.  My daughter is now 13 (negative), and I will be here to see her graduate college and making me a grandmother.
« Last Edit: November 11, 2006, 10:21:38 am by IzPoz »
The reason angels can fly is that they take themselves so lightly. ~ Chesterton G. K.

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: so much for family support...
« Reply #8 on: November 11, 2006, 10:48:43 am »
HOLD THE PHONE GIRLFRIEND!!!!

We have some issues to talk about here and none of them have to do with your family!  Yes, I do know what I am talking about as my "Reverend Father" was not some stranger at church, he was my biological father.

First off, please do me a favor and ask Ann, or Andy if you can change your nick-name, as yours is so very negative in it's meaning.  If you are always "trying for hope", that means you will never gain hope.  I know they will allow you to re-register with a more "hope friendly" nick-name, and after all, you deserve it.

Next, please be aware that the truth of the matter is that HIV loves a body in deep stress.  You happen to be a woman in the most crucial time of her life, as you are creating a new life, and you desperately need to keep your stress levels under control, not only for you and your HIV, but for your new life you are creating.

Please remember; you are a woman, and you have so very much more natural power than any man does, and you just need to reach down and grab ahold of some of that, and make every attempt to get your current situation under control. 

If you need to leave your family for Thanksgiving, then do it.  They certainly are not "helping" your situation right now.  If you decide to stick it out, you need very much to create your "Bubble" of energy around you.  When some of that "Family Noise" starts coming at you at balistic speed; simply re-enforce your bubble and let the energy bounce back to the originator.  Remember, you are woman, you are power, and to combat the negative energy that is coming to you from the other women in the family; you need to exercise that power with control and an assurance that you are OK!

One way to deal with funeral talk is to lighten the conversation, and maybe suggest that the funeral be like a "Halloween Costume" party.  Or maybe have some good rock band come in to play and then have a nice drunken reception afterwards.  Anything to crack the serious nature of such negative conversation. 

I cannot say it emphatically enough, you really must stand up to this situation, as it is being presented to you for a reason, so that you can learn to deal with this disease and all the crap that it may bring into your life.  You are going to have to be strong, not only for yourself, but for your dear baby that is coming soon enough. 

Be strong, and be smart; your life depends on it.

In Love and Support,
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Longislander

  • Member
  • Posts: 2,489
Re: so much for family support...
« Reply #9 on: November 11, 2006, 10:51:28 am »
well said Tim. Amen
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline Iggy

  • Member
  • Posts: 2,434
Re: so much for family support...
« Reply #10 on: November 11, 2006, 11:06:39 am »
.
« Last Edit: January 12, 2007, 07:57:50 pm by Iggy »

Offline tryingforhope

  • Member
  • Posts: 64
Re: so much for family support...
« Reply #11 on: November 11, 2006, 11:55:55 am »
Thanks for your replies. Unfortunately even if I wanted to leave I am stuck here in the boondocks of South Dakota with my fiance in Washington with the car. I mean they do not even have a taxi here.
I will stick it out here for my father, brother and son. That is what I am telling myself. I really am trying to destress as much as possble.
Moffie-my name on here means that I am trying to live my life for Hope who was my best friend that died three years ago in a car accident with me. I was the one that lived out of three of us in the car. The miracle was that I was six months pregnant and sitting in the front seat. You have all given me hope on here that I will be able to overcome this virus.
I would also like to add that I am sorry to all of you that also had family that was too close minded to see that you living your lifestyle whether with another man or not is YOU.

Offline DanielMark

  • Member
  • Posts: 1,475
Re: so much for family support...
« Reply #12 on: November 11, 2006, 02:33:49 pm »
Tryingforhope,

What a beautiful tribute your friend's memory.

Don't be too sorry for me about the family thing tho. My chosen family of friends brings me more joy and support than my relatives ever could or will. It's all good. ;)

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Coffeechick88

  • Member
  • Posts: 431
Re: so much for family support...
« Reply #13 on: November 11, 2006, 05:00:34 pm »
so here I am visiting with my parents until Thanksgiving. I am in HELL. First I get the stomach virus and end up in the ER dehydrated and pregnant. Then today as my sister is leaving I get to hear all about how she is in the grieving stage for me since I am dying. HUH????????? Then my mother chimes in as I am trying to defend myself that a chest congestion will kill me before I see my two year old graduate high school.
SIGH
I am having a hard enough time coming to terms with this disease and my own fear of dying. It seems just when I talk myself into the fact that I will live to sit on the porch and watch sunsets at 70, I get knocked back down to I better make my funeral arrangements.
My family had various reactions when I first became positive.  Some stemmed from just not knowing any better to others just being horrible people.  Some have been willing to read up and get educated on HIV but others I no longer speak to because I don't need the negative energy.  I still remember certain family members not letting me eat with their silverware--I got all throwaway things.  I had to wash my clothes separately from everyone else.  I wasn't allowed to make cookies with anyone--because like most people I liked to get some of the dough.  They were afraid if I did that I'd infect them all.  Others got their jollies out of saying "I told you so" because the guy who did was African and the fact that he attacked me and forced me on a date and infected me with HIV and it just gave them glee that this African was much worse than they tried to say all Africans were.  I now am at a stage where those certain people I do not speak to and I really pity them for their hatred.  My parents went into planning stages for my "imminent death"--they were able to upgrade a life insurance policy, because I have a crap load of student loans from my stint at a private college.  The HIV specialist was able to explain to them that I had a good chance living to be an old lady--drawing social security and getting to take advantage of the senior discount and make the payments on the student loans, lol.   So maybe your family would be willing to learn more.  I go to a bigger practise and my doctor was able to point me to more resources for my family and me to utilize.  I took a few to my appointments and they fired their questions at the doctor. I did go through a lot of hurt when I was first diagnosed and I just now realize it that a lot of it wasn't against me (with the exception of those certain family members mentioned above) but it stemmed from their own ignorance and not knowing better.  I am glad I was able to educate them.   Maybe your mom and sister would be willing to do that--go to appointments, read up on it, etc?  After they see you are not dying and could very well outlive them, they can start shopping for you and the baby. ;D
Lucas James is here
Born 6-14-08 at 1233 am
8 lbs 14 oz, 22 in long

Offline Eldon

  • Member
  • Posts: 2,664
Re: so much for family support...
« Reply #14 on: November 11, 2006, 06:51:30 pm »
Hello Tryingforhope,

Indeed you are caught in the middle of a lot of misunderstandings and uncertainties within your family. Each and every one of them are going through a phase where their hidden fears and their internal anxieties are running the show. It is all about understanding. There are some things that they do not understand and since they do not understand them, you are witnessing a combination of negative thoughts which lead to bad thinking.

In the root of all things they do care in their own way and they are just not showing this through their current actions of behavior. There will be some who will "accept" the situation, "understand" the situation and when they do that is when you will see the "communication" of their understanding.

Then there are some cases where they will just not want to deal with it at all. When they do this, there is nothing that you can do about these behaviors because it was their "choice" to handle it in a manner in which they "think" is appropriate. We feel what we think. Do your BEST to try and understand them and go with the flow until you can change your circumstances.

Spend time alone with yourself and take a look inside of you. There are some realizations and some answers there that you seek.

Make the BEST of each Day!

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: so much for family support...
« Reply #15 on: November 11, 2006, 07:51:18 pm »
Please forgive my assumptions.  I honor you and your friend Hope, and now see that your nick-name is well thought out and a true honor for you to show to all.  You are obviously a very wonderful and loving friend, and that is all the more reason for your family to just leave you alone and at the very least, show some support.

Well, I see you have your work cut out for you, so please stick close by here and we will try to make the month one of a little lightness and joy.

Once again, I do appologise for assumming that your name was referenced to HIV, as so many here are.

In Love,
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline skeebo1969

  • Member
  • Posts: 5,931
Re: so much for family support...
« Reply #16 on: November 11, 2006, 07:56:50 pm »

  Damn that's deep....
I despise the song Love is in the Air, you should too.

Offline aztecan

  • Member
  • Posts: 5,530
  • 36 years positive, 64 years a pain in the butt
Re: so much for family support...
« Reply #17 on: November 12, 2006, 10:38:06 am »
Hey Trying for Hope,

I would like to reinforce Moffie's suggestion of the protective bubble. Visualize it protecting you from the negativity emanating from others, a buffer that repels that negative energy.

It has worked for me in the past and, I hope, would do so in the future.

I'm sending some positive energy your way. Remember, you're family here now.

HUGS,

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

Offline david25luvit

  • Member
  • Posts: 1,409
  • Member since March 2005
Re: so much for family support...
« Reply #18 on: November 12, 2006, 03:01:44 pm »
Family Support..Hmm its sometimes like a kick in the teeth...or so it has been for me.
Hope you feel better sweetie....

((((( Good Vibes ))))) coming your way............... :-*
In Memory of
Raymond David McRae III
Nov. 25, 1972- Oct. 15, 2004
I miss him terribly..........

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: so much for family support...
« Reply #19 on: November 14, 2006, 03:02:00 am »
Hi again,
Oh my god! You have survivrd cancer too? I had cancer. I Cannot believe the absolute horror you have been though! I admire you even more since my lasy email. I mean really. You are an amazing amazing person! I have so much respect for your strenght WOW! I think I have met my match AND THEN SOME> I can't tell you how "in AWE" I am of you. As they say "You go girl!".
Again, I would consider it an honor to get to know you better! How in God's mane do you find the strength. I acn't tall you how  how awesome of a person I think you are!
I have been a proud member in here since June of this year. I have never seen a person over come so much ...I hope you are proud of yourself.
Your story brings to mind a quote my shrink told me back in the 1984. I was having family issues, and she looked at me and said: "Jeff ole buddy. You can't pick your family. But you sure as hell can pick the time you spend with them!" I thought that may apply to you. I hope you can find some meaning in those words.
Thanks for being you. You are fucking amazing. Pardon my french LoL.
I'd love nothing more then to get to know of you better. It would be my pleasure, my pleausure indeed.
I wish you nothing but the best!
With the utmost respect,
Jeff
Positive since 1985

Offline tryingforhope

  • Member
  • Posts: 64
Re: so much for family support...
« Reply #20 on: November 14, 2006, 10:30:27 am »
Jeff I think I will post that family quote on the guest room door!
I am popping in to give you all an update-
My two year old and I both have caught a cold from my little nephew I think. Of course my mother thinks I have the Aids cough. I told her it was nothing that a little Dayquil could not fix.
I have been trying to put that bubble of positive energy around me. My dad has helped some. He arranged for me to speak at our local hospital here about the HIV virus and ways you can support your patient. Here in hickville SD they still have a hard time understanding that the virus is not a death sentence.
I went to church on Sunday which was rough. I felt like everyone was staring at me with a big HIV on my forehead but no one said anything to me so that was a relief.
My sisters are still being nasty so I am avoiding them like the plague. If I hear one more time that if I stayed married I would not be positive I may just kill on of them. What do they know anyway.
Here is the good news. I am TOUGH. I have always been the opinonated one so I guess I will keep being myself. It is kind of like being Sen. Obama at the Republican Convention. He seems to say what he thinks no matter what the oposition feels. I think I will keep doing that too.
Another good item-my mother is the central store manager for our Walmart so she practically lives there! Thank you Walmart.....

Offline ACinKC

  • Member
  • Posts: 2,994
  • Bring it VIRUS! #2 Ranked In-crowd Member!
Re: so much for family support...
« Reply #21 on: November 14, 2006, 12:26:45 pm »
Just watch out for THIS bus... it is apparently the one every doctor in America tells us will kill us before HIV...


LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

Offline CaptCarl

  • Member
  • Posts: 1,114
  • Located in the Palinsville subdivision, JesusLand
Re: so much for family support...
« Reply #22 on: November 14, 2006, 06:56:15 pm »
Dear Hope,
   I see that you have gotten some great advice, from some of the best in the business. For what it's worth, I'll add my own paltry two cents here. It sounds like your family is really freaked. Coming from a small town doesn't help either. My partner is from Wall, SD, And I have lived in a small place a time or two in my life as well. It sounds like they are babbling away about their own fears, rather than allowing you to talk about yours. I would hope that they eventually understand that this is not all about them, it's all about you at this poiint. Having been stuck in a similar situation, I'd refuse to be caught in it again. Next time, make sure you have an out, whether it's making sure to drive yourself, or having a back-up plan if it gets ugly. Do you have any friends in the area that you could call to come and get you? If so, next time you come out there, let that person know, and be ready to call if you need it. I have vivid memories of a 650 mile hitchhiking excursion on Christmas Eve, because I couldnot tolerate the "Dysfunctional Family Feud" that raged around me. I have made myself the promise that I will always have an out should the situation arise. My family is aware of this as well. Living 2,000 miles away helps too. I love my family, well my parents anyway, but for the most part the rest of them drive me insane. Good luck to you, and STAND YOUR GROUND!!! The more you let them walk all over you, the more they will. Put it to them in polite, but very firm and direct terms. The first time they push it, remind them about your feelings, if they still keep up, just make that call or get in the car and go. "I love you, but right now, I'm really pissed and need to go before I say someting that we will both regret" This phrase has worked for me on more than one occasion. Good Luck, Mi Amiga.
  Capt. Carl.
The only thing I can do straight is shoot..

Offline tryingforhope

  • Member
  • Posts: 64
Re: so much for family support...
« Reply #23 on: November 15, 2006, 11:34:14 pm »
Thanks for all the advice. Trust me I am regretting no out at this point. I will have to say though that I did consider my fiance come get me today on his day off. However I have decided that they will have to put up with me for another week.
The funny thing is I have been in a much better mood since reading about the gene therapy!

 


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