Just venting...

[GNYC09]

I've noticed that sometimes people come to these Boards to vent and I am hoping I can have a turn    I am so upset over something minor that just happened and hope to get it off my chest by writing here.  It's only on these boards that I interact with people that have experienced similar situations + feelings.

Here's my story...I was crossing the street an hour ago and saw an old friend on the other side.  I waved and smiled at him.  He stared at me and clearly didn't recognize me so I waved and smiled again.  I saw a  confused look on his face.  When I finally got to him, his eyes popped open and he said, "Hey!  I didn't even recognize you!  Baby, you've lost so much weight.  You can't lose any more!"  I smiled and agreed that I'd lost some weight (I've lost almost 20 lbs from when I was 145lbs).  I told him I was working to gain it back.  He asked me if I was ok and I told him I'd been in the hospital to which he responded, "Baby, take care of yourself. You are so skinny."  It didn't bother me at the time but when I got home, I went to my bed to cry.  This is literally the third time in two weeks that somebody has commented on how skinny I've gotten.

I know my complaints are so minor - so many others on this Board have gone through much larger issues.  I just am so tired of still looking and feeling sick.  I'm tired of avoiding family and friends so that they don't see me looking emaciated.  I am tired of scheduling my meals, my pills, my injections, my multiple medical visits, my sleep.  I'm actually on the mend and have gained four pounds since four weeks ago.  I should be happy about that but, damn, sometimes I just feel like throwing in the towel.  It is so much work.  As I mentioned before,  it's only on these boards that I feel like people really "get it".  I'm part of a "Newly Diagnosed" group therapy and everyone there has been blessed enough to have caught their HIV early and to not have many symptoms or issues.  I hate sounding like a Debbie Downer.  
I guess I should just be glad to be alive.

[Joe K]

Hey GNY,

I'm sorry to hear that you are having weight issues and there is no need to be down on yourself, because a dramatic weight change can be very challenging.  This is not a case about who suffered more, rather it is an issue that is real for you and in being so, is one you must face and decide on how you wish to react.  I've been poz for 25 years, so I understand the shock that people can display, when you have a major change in weight, but I hope you realize that none of this should diminish who and what you are, as a person.

HIV is a bitch of a mistress, but at some point you must decide on just how much you will bend to her will.  There is only so much you can do, to effect immediate weight gain, but you can decide to accept these changes, because they are somewhat out of your control and why worry about that which we cannot control?  My point is that if you can't change what is happening, you need to adjust how you see that change.  That is a key to living with HIV.  Flexibility and acceptance.

I can empathize with what you are feeling, but you have more control here than you realize.  You do not need to disclose why your weight has changed and I suggest, that if you don't wish to explain, you simply refer to the change as due to something... whatever you want.  Unless this is health threatening, this is really about two distinct things occurring together, your weight change and how you perceive that change will be viewed by others.  This is a quality of life issue and it deserves to be treated as such, but in the end, only you can change how you react.

[mjmel]

I had a great big supportive reply that was close to being typed out and I hit the wrong key. Bam! lost it all.  So damn frustrating cuz I do it frequently.

Short version: Venting is healthy. It has a place in this forum and is of great theraputic value and a part of making friends here.
Frustration is second nature in our stuggles with thiis virus. If you need to hear it then I'll tell you all of us feel the tears. All get frustrated at one point or another. That why it's a struggle. You keep working to put some weight back on. That's living with HIV for you at this point. Another HIVer hugs the toilet and wishes it could be different. There's crying, yes. But it's not all struggles. There are rewards too. Little breakthroughs and victories.
We have HIV. We lose friends but we aren't losers. We fight against inner and outer critical dialogues, we struggle to move forward and we do, we cry much like you did, we want to give up but don't, we encourage others haviing like experiences and later we may laugh at our clumsy performance and fears in those first years of our HIV positive life adustment.
I have to stop now. My fingers will f**k this up again. 

Mike

 

[mecch]

I know my complaints are so minor - so many others on this Board have gone through much larger issues.  I just am so tired of still looking and feeling sick.  I'm tired of avoiding family and friends so that they don't see me looking emaciated.  I am tired of scheduling my meals, my pills, my injections, my multiple medical visits, my sleep.  I'm actually on the mend and have gained four pounds since four weeks ago.  I should be happy about that but, damn, sometimes I just feel like throwing in the towel.  It is so much work.  

Just curious, what are the "injections" for? 
Are you working?  Is dealing with HIV/AIDS a big part of your day? This could be quite heavy. I don't think your complaints are "minor" by any means.

You had a pretty nasty diagnosis experience. But hey, you are strong and you're numbers look very encouraging. So I think if you hang in there you'll get your weight back up.

Also, when you are ready, you might consider laying it on the line with comments and friends like the one you just experienced.  I mean, if you feel like he/she is worth the investment of a fuller explanation of where your health is.  Then maybe you'll get a better support and empathy than a quick brush off "take car of yourself" on the street.  That's pretty brutal, but some people are brutallly ignorant.

I was HIV- for 25 years and had quite a few HIV+ bfs.  I was invited on holiday two weeks after I seroconverted last summer. My doc said to go. One of my friends, who new my history, introduced me to several strangers as an "grand escapant de HIV" someone who has "escaped" getting HIV.  Littel did she now I was in total shock, and now positive. 

A few months later, at a party, I had lost 20 kilos and was really skinny, like when I was young pretty boy. It was so ridiculous, everyone saying how great I looked.  When actually I was sick as a dog and needed to start HAART..

WHen I realized the miracle of HAART and my rebound, I just explained to everyone of these friends the real situation. Its much easier and everyone can get what they need, or avoid what they dont want.

[GSOgymrat]

I empathize. Several years ago I lost 30 lbs due to HIV-related GI issues and combined with my lipoatrophy I looked bad. When you have HIV, a disease with a social stigma, and people keep reminding you that you don't look okay it can be very depressing. Innocent comments just become reminders that you have an incurable disease. I try to remind myself that most people make the comments because they care. I also try to do the best with what I have: eat healthy, get sleep, exercise, take my meds, talk to my doctor, dress in clothes that I feel good in. Working on things that I have control over makes me feel better about things I have no control over.

[Texan38]

I "get it" and completely understand.    Vent anytime.     

Hope you feel better. <<Texas size hug>>

[GNYC09]

Thanks everyone for your feedback (and the Texas hug).  You're right that dealing with HIV is as much a mental challenge as a physical one.  And innocent comments become reminders that one has HIV and that sometimes it shows.

Mech, to answer your question, I inject myself with Serostim because of my rapid muscle/weight loss. Needles used to freak me out and the injections sting sometimes but it's got to be done.  And, yes, I'm working full-time after being on short-term disability for a few months.  Luckily, I have a boss that is really understanding. Dealing with HIV/AIDS is a huge part of my day but, hell, I want to live.

Maybe I should revert to a coping mechanism I used during my first few weeks when I'd just learned I was HIV+ and sent to the hospital emergency room: black humor.  Maybe I should've turned to my friend earlier today and replied, "You can't be too rich or too thin." (Sorry, that was terrible.  I may have to edit this out later.)

[positivmat]

Yea I get it too. I lost 15-20 lbs since my seroconversion flu and the following month before diagnosis. I still get comments because I did not return to weightlifting and just play tennis now which further stripped some bulk off of me. I used to get a little self-conscious when people comment.

If you want to try to gain it back, you may want to tinker with your diet and exercise. I have just accepted it and all the free time that it gave me back from the gym. But I totally understand how that can make you feel down.
Take care.
Matt

[antibody]

I too live with and go through the same sort of stuff everyday. I know it hurts when you know you are doing everything you can to be healthy and not being able to put the weight back on gets depressing. Dont let it get you down. We all know what you are going through.

[hotpuppy]

Thanks everyone for your feedback (and the Texas hug).  You're right that dealing with HIV is as much a mental challenge as a physical one.  And innocent comments become reminders that one has HIV and that sometimes it shows.

Mech, to answer your question, I inject myself with Serostim because of my rapid muscle/weight loss. Needles used to freak me out and the injections sting sometimes but it's got to be done.  And, yes, I'm working full-time after being on short-term disability for a few months.  Luckily, I have a boss that is really understanding. Dealing with HIV/AIDS is a huge part of my day but, hell, I want to live.

Maybe I should revert to a coping mechanism I used during my first few weeks when I'd just learned I was HIV+ and sent to the hospital emergency room: black humor.  Maybe I should've turned to my friend earlier today and replied, "You can't be too rich or too thin." (Sorry, that was terrible.  I may have to edit this out later.)

I'm sorry to hear that you are having a rough time.  By the way, you look like a hot guy in the picture on your profile.   

It's good to cry in private if you must cry.  There is no shame in crying and it's better to let the pain out then to keep it in.  It shows humanity and that is normal.  If we could go through life without pain and without joy then what would be the point?  The lows give us a perspective from which we can appreciate the normal and the high and it's up to us to do the appreciating.

I'd like to point out that you are lucky to have friends who care enough to say something.  It must be hard for your friends and this is their way of letting you know they care.  One thing you might consider doing is thanking them for their concern and letting them know you are doing your best to get back on top of your game.  If they persist in going on about it let them know it's a sore subject and then change the subject.  Something like, "I really appreciate your concern and caring, it means alot to me to have friends that care.  However, it's a bit like a wet rug and the issue has been beat thoroughly, everyone wants to talk about it.  Let's talk about something more exciting, I need to get my mind off of it and [insert subject here]." 

I doubt any of your friends realize the pain it causes you when they say something.  You are truly lucky to have people who care about you.   Just gently readjust their concern to topics that aren't so painful to you and realize that they aren't trying to be mean. 

In the meanwhile, it sounds like a perfect excuse to have a slice of cake, a pastry, and treat yourself to something nice from time to time like a good meal.  I probably could lose a few pounds myself, but I'm happy with who I am and I'd rather be a little overweight and enjoy that piece of cake, cookie, or Creme Brulee.  Life is full of little moments and the sooner you start to enjoy each one the better. 

Hugs,
Brian

[skeebo1969]

  I feel you on the weight issues.  I get comments all the time about how skinny I am, mainly from friends and associates.  There was this one person at work who kept commenting on how skinny I was so I told her I have AIDS, now she just says I am an easy going, laid back type of guy.  Of course her comments never once made me want to comment on all those damn pimples all over her face, especially when I catch her ass busting them while sitting at her desk.....

  Some people who usually like to take liberties of pointing out others flaws and/or short comings are usually just miserable anyways.  I mean it's got to be something right?  Why else would someone want to comment about another person's acne prob.......  I mean weight issues anyways?   

  CAN YOU TELL IT DOESN'T BOTHER ME?

[GSOgymrat]

  Why else would someone want to comment about another person's acne prob....... 

Some people have no social skills whatsoever. A 20-something female secretary with acne came into our department one day and one of my coworkers, a 40 year old man with a degree in pastoral counseling, was staring at her and said "what's wrong with your face?" The woman, obviously embarrassed but trying to be nonchalant said it was acne to which he replied "THAT's acne?! That looks terrible!" Everyone was mortified.

He wasn't trying to be mean but was just one of those people who has no filter between their brain and their mouth. One of my coworkers went to talk to the secretary and I got to explain to him in detail why he is a complete dumbass.

[Miss Philicia]

Emaciated and thin is always "in"!  Somedays I wish my wasting bouts had lasted longer, because I could totally work a 30" pair of pants, and I'm 6 ft tall.  I can still squeeze into a 32" now, but 33" is more comfy. 

I'm pondering going for broke and really shedding 10 lbs.  That shouldn't be too difficult if I really apply myself, though I will admit I had a #13 large combo MickyDee's breakfast at 7 am this morning, after a night of insomnia.