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Reged: 04/12/06
Posts: 62
Loc: California
2 steps back (emotionally)
      #188343 - 04/28/06 01:37 AM

Hi all. Just want to warn you that if you're feeling kind of down, you might not want to read on. I have to release some of my frustration and fear, don't really have anywhere else I feel comfortable doing it.

Today one of my nurses called and said that my CD4 count is 153, so I've got to get on meds ASAP. My doctor is on vacation, so I'm scheduled to see one of her colleagues on Wednesday. In the meantime, I have to take meds to fend off that krypto-whatever bacteria that can wreak havoc on a person who's CD4 is so low. And I'm seeing a clinical trial nurse tomorrow regarding a trial for people just going on meds.

I felt like I had just gotten a handle on being HIV positive and also assumed that I would follow the norm of not having to go on meds for a while after exposure. I tried to prepare myself mentally for the idea that I might have to go on meds sooner than later, but one can never fully prepare oneself for that kind of thing, right?

Anyways, after the nurse called, I started to think, "Oh my God. I actually have AIDS. Not HIV." That thought is so incredibly scary. I've never felt anything quite like this before.

For those of you who have been here before (AIDS), is it still OK for me to go to work? I don't want to endanger my co-workers. Am I more dangerous now to the people I come into contact with? Do I need to change my behavior? I know I should be looking at info about that, but I'm just so emotionally exhausted right now that I don't have the will to do it...

The all-consuming regret and fear have surfaced again.


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Reged: 10/31/05
Posts: 3256
Loc: Get off the fence and live again!
Re: 2 steps back (emotionally) new
      #188347 - 04/28/06 02:21 AM

Just dont bleed all over people with open wounds! I am just be sarcastic. Yes if your truly at cd4 153 (be nice to know your cd4cd8 percentage) Don't let an HIV/AIDS level trouble you to much. Once you get on meds, your vl will be driven to undetectable in weeks. Your cd4 will begin to rebound as well and you will be out of that dreaded AIDS catagory. I imagine they want to protect you as much as possible right now so Bactrim and such might be one of those things being px'd you. Dont worry, worry is the worst thing you can do for you cd4 counts.

If you feel up to working, GREAT! Keep working, but be sure you are getting plenty of sleep, eating right etc. I know the next step sounds and seems daunting and everyone reacts differently. But your doctors will get you on the right study and you will get better. Say some prayers and be calm!! BE CALM! Keep posting, this is a great outlet for you and we are here for you.. There are many many many here on this board who have had far worse numbers than you who are KICKING ASS AND ENJOYING LIFE!

Keep a chipper attitude and get moving on meds... Its just time, that all, its just time..


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Re: 2 steps back (emotionally) new
      #188359 - 04/28/06 04:53 AM

Hi there, sugar. Sounds like you are basically simply over-reacting to a word and a count. AIDS and cd 4 count. What it basically amounts to is big deal. It is just your first reaction---fear. This to shall pass. Its really not that dangerous as your mind and emotions are telling relax, go to work, swim, ski, enjoy flowers and birds and people---within a month, two, three you will be back over 200, your viral load will be undetectable, and with in some months your cd count will be soaring back up in 400, 500's
and life will go on for years and years to come, so just relax let go of this first reaction of fear, which is normal, and remember, aids/hiv is a chronic, manageable condition, much as is diabeties, blood pressure, no big deal. I have a friend who is at a 4 right now and is healthy as you please, yes, cd count is 4, another who is at 3, and is strong and healthy, another who, 12 years ago was diagnosed with a count of 1, and he was on a tractor today on his farm, plowing away with a cd of 586 and undetectable. So I am so glad they caught yours at a little under 200, it is so much better that way. How long ago did you get your test back pos? Sounds like pretty recently, is this your first lab? with your counts I mean? Write back, let us know, it is going to be ok. You are not putting anyone at danger by going to work, continue to live your life to the fullest, this is your life, you are alive, healthy it sounds, and planning on staying that way, your just having a bit of a fright, rest your mind, honey, and sleep easy. Nurture yourself, talk about whatever you need to say on board, that is what we're here for. hugs, kisses and love sent your way.

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Reged: 12/21/05
Posts: 1390
Re: 2 steps back (emotionally) new
      #188394 - 04/28/06 12:42 PM

I just wanted to add my voice for support. Eric is right: CALM DOWN. You are still getting dressed in the morning like you always have, right? Well, keep on doing that. Take care of YOURSELF and things go better.

6 ft tall poz bear in Philadelphia

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Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: 2 steps back (emotionally) new
      #188401 - 04/28/06 01:55 PM

You are no more at danger at work than you ever were and besides work is probably the best thing for you now as it gives you a chance to forget about AIDS for a while.

Yes the progression to AIDS is scary. I have posted before some steps to take to come to grips with it and I here post that again. You should see the progression to AIDS as a loss of your previous HIV+ status and the entry into a new phase. You are grieving for the life you had before. With the meds you should see a marked improvement in your numbers. If you can afford it, you may qualify for Federal Disability, check out the Social Security website for details on how to make an application but be warned the process can take months and years, and nearly all applications are denied on the first go. You may need the help of an advocate who may take a significant percentage of you initial reward as payment. Some Aids Service Centers have disability counselors who can help you with the application. The benefit will likely be around a $1,000, more or less, a month.

Read HIV as AIDS. These steps have helped me through a number of crises in my life. Most people progress through the steps in the order given, but you may find yourself in several steps at once and you may revert to an earlier step as you work through the process. Adapt the steps to your personal situation. A good book to help you with these steps is Love is Letting Go of Fear by Jampolsky. Amazon always has a stock of used copies for as little as 50 cents. Those of us who have been helped by Dr. Jampolsky have an obligation to assure that the book is readily available to everyone who needs it. I was counseled by Jampolsky years ago, and I am one who has the obligation.

Love, peace, and luck, friend.

The Five Stages of Grieving

1. Denial, shock and Isolation:

The first reaction to an HIV diagnosis is to deny the reality of the situation. It is a normal reaction to rationalize overwhelming emotions. It is a defense mechanism that buffers the immediate shock. We block out the words and hide from the facts. This is a temporary response that carries us through the first wave of pain. The reality of the diagnosis has not yet been accepted. We feel stunned and bewildered as if everything is "unreal."

2. Anger:

As the masking effects of denial and isolation begin to wear, reality and its pain re-emerge. We are not ready. The intense emotion is deflected from our vulnerable core, redirected and expressed instead as anger. The anger may be aimed at inanimate objects, complete strangers, friends or family. Anger may be directed at our sexuality, god, or HIV. Rationally, we know that our sexuality or the virus or God is not to be blamed. Emotionally, however, we may resent them for causing us pain or for abandoning us. We feel guilty for being angry, and this makes us angrier. We often lash out at family, friends, ourselves, God, the Doctor or the world in general. Many people will also experience feelings of guilt or fear during this stage.
If you have great difficulty accepting your illness and cannot resolve feelings of grief and sorrow, you may want to discuss those feelings with a person who is trained to understand the grieving process. Talking about the condition or illness will often help.

3. Bargaining:

The normal reaction to feelings of helplessness and vulnerability is often a need to regain control. If only we had not been sexually active, if we got a second opinion from another doctor. If we changed our diet, maybe we won’t have HIV/AIDS. In this stage, we often ask for a deal or reward from God, the Doctor or the Clergy. Comments like "I'll go to Church every day, if only I can become HIV negative again. This is a weaker line of defense to protect us from the painful reality.

4. Depression:

Depression occurs as a reaction to the changed way of life created by an HIV diagnosis. The newly diagnosed person feels intensely sad, hopeless, drained and helpless. There are two types of depression associated with an HIV diagnosis. The first one is a reaction to practical implications relating to the diagnosis. Sadness and regret predominate. We worry about the cost of treatment. We worry that, in our grief, we have spent less time with others that depend on us. This phase may be eased by simple clarification and reassurance. We may need a bit of helpful cooperation and a few kind words.
The second type of depression is more subtle and, in a sense, perhaps more private. It is our quiet preparation to separate from the way our life was before the diagnosis and to begin to bid farewell to that life. It is best to remember that a simple hug is a powerful thing and sometimes that is all that is needed to ease the moment.

5. Acceptance:

Reaching this stage of mourning is a gift not afforded to everyone. Acceptance comes when the changes brought upon the person by the HIV diagnosis are stabilized into a new lifestyle. It is not necessarily a mark of bravery to resist the implications of an HIV diagnosis and to deny ourselves the opportunity to make our peace. This phase is marked by withdrawal and calm. This is not a period of happiness and must be distinguished from depression.

Life is a river.
Carpe diem.

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Reged: 04/12/06
Posts: 62
Loc: California
Re: 2 steps back (emotionally) new
      #188406 - 04/28/06 03:10 PM

Good morning - so, I'm feeling better today. I'm still a bit down, but reading your posts has been an incredible help. I am so very grateful for you all. I really needed to hear that I was overreacting, and my goal for today is to be calm and focus on the hope instead of the fear.

Even though I thought I had done a lot of reading about the subject, I had no idea that people could still be healthy with really low CD4 counts like the friends anon mentioned. That's amazing! That's a mind-boggling and extremely encouraging thing to know. And I'm deflinitely going to read the book Scot Charles recommended. I also didn't know about the stages of grieving. I'm going to keep that list for future reference.

Anon, here are the answers to your background questions:
- I was tested mid Feb, informed of my positive result mid March. Looking back on events, I had ARS at the end of December 2005, but it was incorrectly diagnosed.

- After my positive test result, I had one previous lab taken, at CD4= 264 (11%). VL was 98,800. They've never done a CD8, and I don't know what this new percentage is what my VL is now. But I'm going back today to meet the clinical trial lady, so I'll ask...

Once again, thank you everyone for your support. I'll keep you posted and have a great day -


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