I HAVE AIDS DIAGNOSIS FOR FIRST TIME IN 13 YEARS AND I FEEL SCARED

[stevie]

I have recently found out that my t cells have dropped below 200 and do not like the way i feel.

I went on Bactrim, was allergic, now I am on Dapsone.

I have been on a drug holiday since last year due to liver problems.  I will start anti virals again by the end of the month.

My viral load is 99000, my T-cells are 145.

I feel tired and a bit depressed.  I worry about my mortality. I worry that perhaps I am on the second half of this journey, could I actually be getting sick in the near future?

I am scared to let friends know what is going on with me, because I don't want people talking about me behind my back.

What do I do to become more accepting of my disease and less afraid of what people think.

I want to come out of my AIDS closet in a way that I can get support, not uncomfortable reactions from others.

Any suggestions?

Thanks,
Stevie

[DanielMark]

Hi Stevie,

Your fears are natural, only don’t let them be set in stone. Things can still improve.

In 2002 with a VL more than 500,000 and very few CD4 cells, I was also classified as having AIDS. It took a couple of years of adherence to meds and surgery for an OI but my numbers vastly improved and although I am still on file as having AIDS I consider myself to have rebounded from that diagnosis.

Never give in and never give up!

Daniel

PS: your true friends will give you the best support. The rest aren't worth bothering about..

[ubotts]

HI There,

This is a great place to be and to find answers and comfort.

I myself have been diagnosed with full blown aids because my numbers
went below 200...but i looked the same..Maybe felt a bit tired, but
that's normal..

Eventually your numbers will go back up and back down..

Don't get caught up in numbers, because they will fluctuate constantly..
I was on Bactrim as well, and I got sick as a dog.

Now on my folder it says...IN BIG Letters..Allergic to Bactrim..

About coming out to others was hard for me as well..All of my family knows
and only a few of my good friends know..

Maybe ill never be 100% out of the closet with hiv...But at least some know..

You have to use you senses and feel around of who you can tell and who you
cant..
At least that's what i did..
Just finding out is scary enough...

Work at one thing at a time.....try not to let it overwhelm you..
I hope this helps.......

[J.R.E.]

Hello Stevie,

I looked back at your other post. You apparently were on Viramune and combivir. Has there been any suggestion to you as to your new regimen? Did the doctor suggests any resistance tests prior to starting on the new regimen ?
I had my Aids diagnosis in 2003, with 16 t-cells and a 500,000 viral load. I am sure things will work out for you.


Hang in there----------Ray

[chefrusty904]

I have recently found out that my t cells have dropped below 200 and do not like the way i feel.

I went on Bactrim, was allergic, now I am on Dapsone.

I have been on a drug holiday since last year due to liver problems.  I will start anti virals again by the end of the month.

My viral load is 99000, my T-cells are 145.

I feel tired and a bit depressed.  I worry about my mortality. I worry that perhaps I am on the second half of this journey, could I actually be getting sick in the near future?

I am scared to let friends know what is going on with me, because I don't want people talking about me behind my back.

What do I do to become more accepting of my disease and less afraid of what people think.

I want to come out of my AIDS closet in a way that I can get support, not uncomfortable reactions from others.

Any suggestions?

Thanks,
Stevie

I have recently found out that my t cells have dropped below 200 and do not like the way i feel.

I went on Bactrim, was allergic, now I am on Dapsone.

I have been on a drug holiday since last year due to liver problems.  I will start anti virals again by the end of the month.

My viral load is 99000, my T-cells are 145.

I feel tired and a bit depressed.  I worry about my mortality. I worry that perhaps I am on the second half of this journey, could I actually be getting sick in the near future?

I am scared to let friends know what is going on with me, because I don't want people talking about me behind my back.

What do I do to become more accepting of my disease and less afraid of what people think.

I want to come out of my AIDS closet in a way that I can get support, not uncomfortable reactions from others.

Any suggestions?

Thanks,
Stevie

Stevie, I have just made a tremendous increase in my cd-4 count. 150 to 480 and a decrease in vl to 1500 copies I am not taking any meds right now but am keepinr the option open.
my overall health has increased dramatically
I am a recovering addict and something as simple as not injesting any harmful chemicals has given me almost immediate health benifits

[aztecan]

Hey Stevie,

I don't know where you live, but is there an ASO (AIDS Service Organization) near you? That would be a good place to start to "come out" of the AIDS closet.

The people there may be able to steer you toward a support group, which can be a good way to meet others in the same boat and to find people who will understand what it is you are going through.

We have people from all over here. If you would like to let us know where you live (just a city, state or country) maybe someone here could give some suggestions.

Coming here is also a great help. Believe it or not, just communicating with others, even if it is through cyberspace, can be very beneficial.

Let us know how you are feeling. I am glad you are here.

HUGS,

Mark

[newbernswiss]

Hey Steve,
Don't put your life on the value of a number. It's natural to be scared and afraid.
First off what's the difference between 145 (Aids) and (201) HIV. HMMM, first off we all vary at times with our CD4 count. First off talk to your doctor about your med treatment, then look at stress in your life, maybe a vaca is in order for a little R&R. Stop looking at the number and looking at how to improve your overall health and state of mind. When my CD4 was 30, I was sure death was following me around. I think I made myself more sick thinking about the NUMBERS, than the actual HIV. I took a break, changed my meds and now I'm back on track. I also stopped smoking, drinking, and drugging. A clean body requires a clean mind. (thoughts not included)

[Moffie65]

I am scared to let friends know what is going on with me, because I don't want people talking about me behind my back.

[/color]

You state you are depressed.....  What the hell man, don't you think they are talking about you already, so what difference does it make if you make sure the conversation is something you can control?  Especially if your friends are so ignorant they would talk and not know anything about HIV/AIDS.  You could be their messenger, and end up with more support than you ever dreampt of. 

Come out of that damn HIV closet and get on with your life!  Nothing anyone can say will do more damage to you personally than the worry you harbor in your own mind and heart. 

I was where you are in numbers in 1993, (vl 1.5 million, CD4 20) and am now celebrating my 24th year with this disease, so you have a long way to go yet before you are near checking out.  Damn, take control of this illness and don't let it control you anymore.  What other people say or think is of no consequence to you in your overall lifespan so why place any credence in that stuff?

Take your power my friend, nobody else deserves what was given to you and you alone!  (Power over your own life!)

Peace.

[OneTampa]

Hello Stevie,

I understand your concern.  But believe me, you will improve.  Twenty years ago my CD4 was 74 (they did not have the viral load test in the early days) when I first tested positive and I was told that I had about six months to a year. Somehow I didn't believe it.  I too took bactrim and the allergic reaction was horrible. I felt like scratching my skin clear off. Over the years my labs steadily improved.  My CD4 climbed to over 300 ten years ago and has been over 550 for the last five years.  I have been non-detectable for about ten years.  Throughout the years I've been fortunate and never hospitalized or gotten sick. I have the same doctor now that I had twenty years ago. We have a very good relationship and he smiles broadly whenever I see him. Over the years we have become "seasoned"  together.  Bless him.  Stevie, keep your head up and seek out an agency or support group in your area to help boost your spirits.  Hang in there! 

[mjmel]

Welcome to the forum, Stevie.
The majority of people in this forum have had same considerations regarding coming to terms with their own mortality. YOU are not alone in this aspect. We all worry to some extent if we are going to get ill.......or when it will happen........or if it will happen soon. I could go on and on because such is the nature of worry. As you know, one doesn't have to be HIV+ to comtemplate ones own mortality, though.
I am sorry you feel so troubled by what others think.........or what they might be saying or thinking of you. It is tough to overcome this tendency as we all want to be liked and loved and reap the rewards of friendship. Each of us who is HIV+ has had to consider being honest and forthright with friends and acquaintances and weigh in the risk of disclosure(s). Some will understand and be empathic........others will flee. It's just the nature of human beings. In my perception, if they don't stand with you steadfast then they were not friends (at least, in my definition of a friend.) So you may just have to develop a thicker skin and accept that you can't applease everyone all the time. (It'll drive you plum crazy trying to do so.)
It is a sad fact the being HIV+ isolates us to varying degrees from those who are not HIV+ and we must seek anew to 'keep the fire going' and this sometimes is a bit alienating. Don't be disheartened. Events and people come into your life. It's not like you have to tell everyone you are HIV+ but just one good friend is worth his/her weight in gold, buddy. By taking control of your life in the manner Moffie (a 24 year survivor) suggested in his post, you may find yourself making new friends/acquaintances and taking on a new attitude which doesn't tolerate people who treat you as though you are the disease instead of you having a disease.
I understand your fears. I understand the depression. Truly. I have survived 17 years with this unwelcome shadow. Your worries can be surmounted........that is, to prevail over and overcome your current obstacles of the fear of isolation. It's been done before and you can do this too. I hope this post and the others, as well, have been some encouragement.
Take care and again, welcome.
Mike

[atxpozguy]

This makes the 3rd time I have written something only to see if disappear when I hit the POST button.

Stevie,

You will outlive most people who tell you negative things about AIDS..Trust me and everyone on these forums, life with AIDS is another chapter in life that many don't have the courage or ability to fight with the resources available.