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Author Topic: Need some help  (Read 3999 times)

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Offline Stone

  • Member
  • Posts: 55
Need some help
« on: August 31, 2008, 03:51:02 PM »
My brother lost his partner to complications from HIV related cancer 3 years ago.  His partner found out his HIV status after the cancer was diagnosed and my brother found out about his HIV status a year later when we finally got him to go in and get tested.  They both did really well for five years but then the treatment that saved his partner killed his partner.  Now my brother is facing life alone, with HIV, and lipodystrophy.  He doesn't think that anyone will possibly want him, in his words "Who wants to be with an old, sickly, balding man".  Now make no mistake, despite the lipo that has affected his legs, butt, and arms he is still very good looking.  Also, despite his claims of being "sickly" he is still very active and works 50 - 60 hours a week.  I am a nurse so I have done some research on lipo and realize that the only treatment right now is plastic surgery and the possibility of using different meds.  I did get him to speak with his ID doc and switch from Combivir and Sustiva to Atripla but that was 6 months ago and it seems as if the lipo is getting worse instead of stabilizing as I had hoped.  In addition, I have taken him shopping and got different clothes that make his legs and butt look bigger (smoke and mirrors baby) as well as padded underware.  Hasn't helped.  It seems like he has just given up and sentenced himself to a life alone.  I have tried pleading, guilting (you have to live for both of you now, John fought so hard to live and you are just pissing your life away), and yelling.  Hasn't helped.  I don't know what else to do and as a self proclaimed "fixer" am getting desparate.  In my career I have seen more than one person will themself to die and am scared that is what is happening here.  He is totally computer illiterate so getting him online is not an option.  I have also suggested antidepressants / anxiolytics but he doesn't want to try them.  I am at my wits end and any suggestions would be greatly appreciated.

Also I need some help for myself.  I know what I am about to say is totally irrational and probably the "terrible person of the year statement" but sometimes I get so damn mad at him for contracting HIV in the first place.  Most days I can reason myself out of it, I wasn't always safe and know I just got lucky.  I also know he didn't do it on purpose.  On bad days I fall into the "Why the hell wasn't he more carefull" mode and I hate myself for it.  Regardless of how I am feeling I try to support / help him and always love him but I want the bad days to go away.  Anyone else feel this way and if so how did you make yourself stop?

Thanks for listening, sorry this post is so long but I guess I had more to say than I thought.

Offline allopathicholistic

  • Member
  • Posts: 3,258
Re: Need some help
« Reply #1 on: August 31, 2008, 04:09:07 PM »
Hey at least you're honest. In my life, I wouldn't be surprised if sometimes people ocasionaly think those thoughts about my acquisition of hiv but they just keep silent ...  It's a challenging reality and tests everone involved but the secret is to always remember to take the high road and it seems like you're doing that. It's unfortunate that computers aren't his thing because he could get a lot of inspiration and ideas from it (for lipo or otherwise)

For example:
Quote
CONCLUSION: PMMA facial implants showed to be safe, lasting, cost effective, very well tolerated and with no side effects when compared with temporary implants. The implants had a positive influence on patients psychological status, recovering their self esteem and improving quality of life.

Source:
National Institutes of Health
http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102251747.html

Regarding the romance thing, you can create a personal ad for him and summarize the men who respond to the ad. The site is http://personals.poz.com It might be fun!

Offline MOONLIGHT1114

  • Member
  • Posts: 1,918
  • Cheech 2.2.94 - 4.23.10 We miss you so much!
Re: Need some help
« Reply #2 on: August 31, 2008, 07:13:51 PM »
Hi Stormy~

I was diagnosed in 1993.  I suffered lipo from being on Sustiva/Zerit/Videx EC.  I am now on Sustiva/Truvada.  I've got the chicken arms and legs and no butt, my face has changed, but hey, I'm alive. 

I can understand your brother being depressed and feeling that no one will ever want him again -- I went through the same thing.  My husband had the virus, knew it and passed it to me.  He died on 8/21/96.  I am in my fourth relationship since his death, and have kissed a lot of toads along the way.  I always felt I wouldn't be worthy, then once I gained some confidence back, I then felt that no one would ever understand me, even if they thought I was worthy.  I am in a relationship with a caring, HIV- man.

I'm no doctor, but perhaps it would benefit your brother to speak with a therapist or to join a support group?  I did the therapy route early on, started in 1997 through 2004, because I liked the privacy aspect of it.  However, even though my therapist was a compassionate man, I still felt that on some level he couldn't totally relate to life with HIV.

I joined a local support group a year ago and attend 2-3x a month now.  It really helps me to feel like I'm not the only one.

Your brother may have to take slow steps to help himself through this, but be patient and understand that there IS hope.

Please show him our posts.  He isn't alone, he doesn't have to be alone.

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

Offline Stone

  • Member
  • Posts: 55
Re: Need some help
« Reply #3 on: August 31, 2008, 11:38:34 PM »
Thanks for responding!  It is just so hard to see his self esteem and self concept be so low as prior to this he was very confident and self assured.  I try to be patient and pass along as much information as I can but nothing seems to be helping.  I know everyone grieves in their own way and heals in their own time but it is getting almost dysfunctional here.  He still has his partners clothes hanging in the closet and his partners dirty clothes in the clothes basket.  I also question how much of the weight loss is lipo and how much is stress induced.  It just seems odd that he was on the same meds for four years and had no problems with lipo until after John died.  At any rate, it is really hard to see his self esteem and self concept be so low as up to this point he has been very confident and self assured.

I have been telling him that HIV seems to be less of a handicap in the gay community when it comes to dating than it is in the hetero.  I don't know if I am right for sure but it seems that way from what I see and read.  Any thoughts?


Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 24,689
Re: Need some help
« Reply #4 on: September 01, 2008, 12:02:27 PM »
Hi Stormy,

You're doing an amazing supportive and loving job with your brother. He's lucky and I daresay you are also to have each other.

The best thing you can do for him is for starters to make sure you are taking good care of yourself and getting the support you need. Checking in here is a good idea and I can see you have begun to get responses. Come here as often as you like to talk about whatever is going on.

Have you checked out ASOs in your area to see if there are support groups -- something for your brother and perhaps for yourself as well. And counseling.

Secondly, keep your brother talking. Putting all of his thoughts and feelings into words is a good way of getting stuff out that otherwise can cause depression as well as have somatic side effects. Talking will mean that he isn't always by any means going to have things to say that you'll be glad to hear, but his ability to express and tolerate all kinds of feelings is going to be helpful to him.

You can also try asking him questions like "is there something I should be doing that I am not?" or "any thoughts about what might be helpful to you?? Use your instinct and your long knowledge of him about this. Also, let him know how you're feeling -- whether frustrated, sad, concerned, whatever. Not in a dumping way, but just to keep it real between you. That also may help him to become more expressive verbally.

These are just suggestions and come under the heading of do only what feels right to you and is useful.

You're welcome to pop in here as often as you want to. As is your brother...

Cheers,
Andy Velez

Offline Stone

  • Member
  • Posts: 55
Re: Need some help
« Reply #5 on: September 01, 2008, 07:06:49 PM »
Thanks for the advice Andy, asking if there is something I should be doing that I am not is something I haven't thought of.  Do you have any experience with confidentiality in the ASO?  My brother will lose his job if his status gets out and out here in Podunk ND it is a huge concern.  He even has to drive 150 miles for medical care due to this issue.  Thanks for your help.   

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 24,689
Re: Need some help
« Reply #6 on: September 01, 2008, 07:27:54 PM »
Any conversation with a professional at an ASO is considered privileged information. If you make the contact there you can without giving your brother's name make clear your concern about protecting his privacy -- and ask them directly about it.

See how that goes and let us know.

Cheers,
Andy Velez

Offline megasept

  • Member
  • Posts: 478
  • Steven here...
Re: Need some help
« Reply #7 on: September 02, 2008, 07:03:12 PM »
...I know everyone grieves in their own way and heals in their own time but it is getting almost dysfunctional here.  He still has his partners clothes hanging in the closet and his partners dirty clothes in the clothes basket.  I also question how much of the weight loss is lipo and how much is stress induced.  It just seems odd that he was on the same meds for four years and had no problems with lipo until after John died.

Stormy:

OK, we both know he's got to "save himself" but nudging and helping is just fine. You love him and he's got to know that.

I had my last partner's clothes in our closet for 3 years! It is about grieving. I am generally strong and confident, but you know sometimes I just don't feel that way anymore. All the phrases I never took seriously like "damaged goods" bounce around in my head. It is better being gay for dating while POZ; it is not fun! It's just better than being straight and POZ and trying to date. Dating itself can be quite a drag (unless you like trading horror stories). "Unclean" and "disease-free" are phrases that bite even if a couple centuries apart. Everyone (poz) here, probably feels some aspect of the sting of rejection (sex is the least of it). The therapy or drop-in group suggestion both sound good.

Weight (fat) loss and Lipo do not look the same. If you lose fat in your face and ass cheeks while simultaneously gaining it well above the waist, that's not "weight loss" and it's not "aging". You're analytical in your profession, so you can see what's going on physically, head-to-toe. Lipo isn't stress-induced. It took 2.5 years for my Lipo to (suddenly) arrive one August, while on 3TC + D4T. It is entirely possible a similar occurrence could take place 3 or 4 years into therapy for someone else. Feel free to PM me about "surgery" or Lipo in general (and read the Lipo threads since lots are knowledgeable on this subject). Most people here say Lipo arrives gradually. Maybe it does, usually Just not in my case.   Lipo gives me a lot less grief ten years later, so that's cause for celebration. It does affect self-esteem and it's a bitch trying to sit on a bony ass after you lose half your cushioning.

Good Luck with everything, and don't give up!

 8)  -megasept  PS Balding is caused by Testosterone, so it's the Badge of Virility! Anyway, he can wear a hat outdoors.

« Last Edit: September 02, 2008, 07:10:51 PM by megasept »

Offline theAdviserMe

  • Member
  • Posts: 3
Re: Need some help
« Reply #8 on: September 04, 2008, 10:00:14 AM »
It is never easy to find people you love get infected by HIV. One of the greatest pressures is the pressure coming from the society itself. I understand your predicament and I fully sympathize with you.

Offline riverlassie

  • Member
  • Posts: 31
  • Beauty is in the Eye of the Beholder
Re: Need some help
« Reply #9 on: September 06, 2008, 04:31:26 PM »
at those moments all you can really do is remind yourself that He didn't do it purposely, and I'm sure he wishes he could turn the clock back . But in the end it is what is it  is now...........
Worrying is like a rocking chair. It gives you something to do but doesn't get you anywhere.

Offline xyahka

  • Member
  • Posts: 778
  • Dance together!! aha!! aha!! I like it!!
Re: Need some help
« Reply #10 on: September 07, 2008, 04:17:14 PM »
We all blame ourselves all the time for getting infected... and even my sister does not tell me what she thinks all the time, my mother is expressive enough to tell me i am guilty for what happened and it was my fault not to listen her. This usually happen when she is angry.

First, it hurt... now i just undertand... Hiv brings pain and frustration to everybody around me, not just me.

Forgive and forget... is what i try to do, it is like routine of exercise that i keep on doing every single day i feel guilty or others blame me for my actions... hurt and pains won't change my hiv status, but forgiveness and forgetness (hope it is well written) will heal my soul. I have committed myself to forgive me for what i did to myself for the rest of my and to forget about my guilty feelings and move on every single day too.

Juan Carlos
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...

 


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