Living by the numbers...???

[Brian360]

So I've been on meds for about a year now.  When I started I was playing with 1 tcell and a viral load so high they stopped measuring.

So after living, I guess, a little too "hedonisticly" I slowed way down to help my health.  So I've been pretty good with taking my HIV meds.  I was also diagnosed with that MAC OI and on my second regimen with that now and besides from the very occasional kindney stone I'm handling the meds pretty well.

In late March my tcell went from 48 to 109 and that got me really excited as it was the second time I've been over 100 since starting, but today that number fell back to 58.

So I guess my question is...do your numbers effect the way you run your life??  I thought by being "kind" to my body that it would help the healing process but obviously it's not doing too much.  And in the meantime, I've become sedintary and definitely not the vivacious person I used to be. 

For those that have lived with this for while...do you just make the best of every day, kinda "no-holds-barred", only going down when you absolutely don't have the strength to get up and kinda only being reminded that you have this when you take your meds.

I guess, I'm starting to answer my own question in thinking "yeah, don't let this crap control you while you're still up".  I guess I'd like to hear the attitudes of people that have been dealing with this for a while and how they cope with it mentally.

Thanks,
Brian

[Queen Tokelove]

I have been dealing with this going on 10 yrs and no meds. I consider myself to be blessed and believe me, I count that blessing everyday when reading some of the posts here from people having major problems. I deal with this virus on a day to day basis and I take care of myself the best I can. I go to all my doc appointments etc. I have heard people say here when your cd4 is really low and on meds that it takes your body awhile to build them back up..Maybe it will just take time. But I'm sure there will be someone who can be more helpful than myself....Wishing you the best....

[RapidRod]

Numbers are numbers, how I feel is all that matters. I can't count past a hundred anyways, so it don't matter.

[Jerry71]

Hey Brian just noticed this after I posted my thread today. Yeah I know where you coming from with when it comes to living by the numbers. Seems like the more you try to stop this and start that eat this and don't eat that. That is usually when the numbers do a flip and drop or rise. It would be nice if everyone had the same body functions and were not allergic to certain types of drugs. Then the companies making the meds would go out of business and we could just be HIV+. Instead we have to take a handfull of these pills everyday and have the joy of being in the Under 200 Club. Hang in the Brian hopefully there will be better days soon too come.

[Dragonette]

yes i am affected, i wasn't initially, i had no idea what the numbers meant, and even arranged to travel in asia with a CD of 130 (up from initial 77) but now it does certainly affect me, the more you know and all that.... I am not exactly part of the 200 club but I flactuate all the time just above and below it, like 200-300-230-270-180-240-210, and so i think that in between tests i must go under it, and yeah it makes me think that i am fragile.

funny thing, for years i was notorious for nodding off everywhere, i mean in lectures, cinemas, friend's, office, busy shoping malls, noisy boats... i was so fatigued all the time, but b/c i had no idea it was the hiv i just lived with it. now though when i get this fatigued i becoes irritated, it makes me want to cry with impatience and exparation, like today when i had to leave work. i also lived with a number of other side effects of adavanced hiv infection (though luckily no life threatening OIs), and just thought they were "a part of me".

i guess acceptance is partially the key, on the days that i more or less accept my limitations, i find myself, ironically, enjoying a fuller life than when i struggle with them. but damn this spiritual growing stuff is hard.

[Dachshund]

Sometimes we focus way too much on the numbers causing undo stress and anxiety. You didn't mention your viral load...are you undetectable or heading that way? I think we sometimes let the numbers become self-fullfilling prophecy...gee my tcells are a little low so I should act and feel low. Right now you want to shoot for an undetectable viral load and I bet your cd4 improves.

Rod is right listen to your body and not your numbers.

[J.R.E.]

Hey Brian,

I try not to live by the numbers, but it is pretty hard to do at times. About two days or so prior to getting my blood tests, and until I receive them in the mail, a week and a half later, I can't help but  think what the numbers will do this "time around", and what that next possible course of action will be, if things do take a non favorable turn. I've also been living with HIV since 1985.

But, I also know, that I am doing everything that I believe I  possibly can, to try to keep healthy, and to hopefully keep those numbers going in the right direction, Which means, eating right, getting that 8 hours of good sleep a day. Making sure I take my doses on time, and not miss them ( which can be a little trying at times) . I keep myself busy, so I really don't have the time to think about the numbers that often. I try to keep myself as mentally and physically active as I possibly can, through hobbies, my  job, and different projects around the house. And, just try to generally avoid stress as much as I can. I also make sure to get a good laugh in each day. Laughter can help !! Try renting some good comedy's. Music also plays a big part in my life. It helps to soothe, and to take your mind off things. I have also learned not to bottle things up inside. You have to release..., you have to be able to speak, what's on your mind, so I am fortunate for my friends, and my partner Ed.

You can not allow HIV to build a wall around you, if that starts to happen , you better start tearing that wall down. ( I fell into that mindframe several times throughout these past 22 years) It's a dangerous place to be in.


I also believe that I was more focused on the numbers, then I am now, especially that first year on meds. I will be on meds 4 years, this coming October. As Dragonette stated "acceptance is partially the key". I take each day as it comes.

Take care-----Ray

[aztecan]

Hey Brian,

During the years, I have dealt with the Crix kidney sludge, a a few other problems, but, gratefully, no OIs

That said, there are days when I feel like warmed over cow manure. Like Dragonette said, just tired and I can fall asleep anywhere, any time, except when I want to.

Other times I am on top of the world and can go all day and night.

I still pay attention to the numbers, but I don't let them dictate how I feel. Sometimes I fret over them too much. But, as Ray said, don't let HIV build a wall around you.

Live every day to the greatest extent you are able. Be the vivacious person you once were.

That doesn't necessarily mean drink or drug yourself into oblivion on a daily basis, but you said you have taken pretty good care of yourself, so I think you have a handle on that.

I am always reminded of a line from "Auntie Mame," delivered by the inimitable Rosalind Russell.

"Life is a banquet and most poor suckers are starving to death."

HUGS,

Mark

[DanielMark]

For those that have lived with this for while...do you just make the best of every day, kinda "no-holds-barred", only going down when you absolutely don't have the strength to get up and kinda only being reminded that you have this when you take your meds.

Hi Brian,

After living nearly 19 years with HIV, I mostly just treat it like an unwanted house guest who won't leave. I was never a candidate for Boys Gone Wild to begin with, but I did learn to adapt to the new situation without much mourning of any losses. Coincidentally, I was in a Rehab place when it was discovered I might be positive, so I had already made the decision to stop abusing myself with alcohol and other drugs – so no great loss there.

After diagnosis I was advised to give up my high stress job, so I did. Again, no struggle there.

I would say that over time and with age my values and life priorities have changed, and to me that’s as it should be anyhow, HIV positive or not. Gratitude and appreciation have become my friends. Anything that interferes with my well being is not. That would include mourning over things lost that weren’t the best for me to begin with.

Everyone handles life and life changes in their own way.

Daniel

[Brian360]

I just want to thank all that wrote in response.  You know dealing with HIV/AIDS is as different as life for everyone that has it.  It's not like having a cold where you can expect the same problems no matter who you bump into.

Its great reading about the different tidbits of information from peoples' experiences, and with your contributions I can throw that into my "bag of tricks" and use the ideas to help me get through this.

For those of you that have been in the fight for over 15 years, I applaud you.  Sometimes I don't know whether to accept this as a new lease on life or a slower more knowing death.  But to read about people like you that have gotten through it, it is very much inspirational.

Thank you.

[Brian360]

 To Queen Akasha

Yes you are very blessed!! To have been diagnosed for so long and not to have gone on meds.  I wonder how many other people can say that?  I guess I am too blessed as that my only real problem is the interruption of life to take the meds I need to and maybe a minor pain here and there.  The more research I do and the problems I have come across, makes me thankful to not be in the position I have read others to be in.