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Author Topic: Newly diagnosed, numb and bewildered...  (Read 4703 times)

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Offline JPinLA

  • Member
  • Posts: 148
  • Cheers!
Newly diagnosed, numb and bewildered...
« on: December 15, 2006, 11:54:26 PM »
Hi all...I was recently diagnosed as HIV+ (Nov 28 2006).  I have to say that I am a completely numb these days.  I do not want to talk about it, I don't want to think about it, I don't want to have it.  I have distracted myself with the mundane daily tasks of life (commuting to work, working, coming home, walking the dog, cooking dinner..).  Frankly the rote has been so much more satisfying for the pastfew weeks than it has ever been.  The first few days I cried with my partner, talked to my closest sisters and two friends.  Then I just shutdown.  After my diagnosis by my primary care physician (just for Abs) I made an appt. at what I have heard is one of the best HIV primary care medical practices in Los Angeles (that was on Monday, Dec. 11).  My viral load is 5,784 (they drew more blood for the T-cell count since my former physician ordered the viral load test without the T-cell test) and thus far no medications. 
I have a partner of 9 years who is for now negative (he was tested Oct 28) and who hopefully remain that way (he will be tested next month again).  He has been my rock.  He has only love, support and unconditional understanding.  My greatest fear is that he will be positive too.  I am not certain what to expect.  I have not been sick for at least 2 years.  I haven't even had a cold.  My diagnosis was caught as part of a yearly physical.  I feel so oddly detached from my status and at the same time I feel like it has consumed me. I mostly feel like I let myself ans so many people down.  I feel hypocritical for volunteering for so many years for HIV/AIDS educational programs and outreaches.

It must seem like I'm rambling, but it's comforting to get it off my chest. I have a therapist that is helping me on my way, but this venue is so much more therapeutic to me knowing that you all have a similar perspective.  I am looking forward to using this site and to getting to know you all.

Happy holidays.. 
11/06 - Diagnosed - VL/5784 & CD4 326
2/07 - VL/6000 & CD4 290 2/07
3//07 -Began Truvada/Viramune 
4/07 VL/undetectable and CD4 320 22%
7/07 VL/undetectable and CD4 286 22%
11/07 VL/undetectable and CD4 302 26%

Offline Queen Tokelove

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  • Posts: 6,033
  • Smokey the Smurf
Re: Newly diagnosed, numb and bewildered...
« Reply #1 on: December 16, 2006, 03:20:45 AM »
JP,

I'm sorry you tested poz. Welcome to the forums, this is a great place to learn things and to vent when things seem a bit overwhelming. What you are feeling is normal but it's great that you have a good support system set up with your family, partner, and therapist.

I know you are worried about your partner's health but just take it one day at a time. If he should become poz which I hope he doesn't, I'm sure you will be there for him like he is for you. There are couples here that are -/+ and will probably be able to give you more insight.

Don't feel like a hypocrite because you worked for HIV/AIDS programs, you were there to help and I hope you continue to do so. YOU did not let anyone down. It will take some time to getting use to things but it will be ok. I hope to hear more from you in the future...Again welcome..
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Eldon

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  • Posts: 2,664
Re: Newly diagnosed, numb and bewildered...
« Reply #2 on: December 16, 2006, 04:29:47 AM »
Hello JPinLA...

It is unfortunate that you have tested positive for HIV. Due to the shock and other concerns that are evident, you will have a mixture of different emotions running through you. When you shut down, that is the time where your mind is processing and digesting all that has occurred at this point in your life. Spending time with yourself helps you to sort things out and to address the areas that are most concern to you.

You have your BF which is your rock. It is GOOD that you have him for unconditional love, support, understanding, and communication. It takes time for this to be absorbed. I only want to encourage you that it will. Acceptance is a major factor in all of this. When you reach this point you will know. In the mean time, try to stay as calm as possible, keep your stress levels down and monitor your current health. Anxiety causes physical and mental symptoms just as well. May I reassure you that you are still in control of your life.

In my own way, I wish to extend to you a WARM WELCOME here at the AM forums. Here you will find the encouragement, communication, understanding, support, some cries, some laughter, and many of your questions relating to HIV/AIDS answered.

The Handshake Of Reassurance


We have a great group of Real People who will listen as well as answer you. We are here to Encourage, Learn, and Help one another as we all walk on our journey in this life.

With the consideration of implementing a Positive Mental Attitude, it will also assist you on your journey in this life as well as having a Positive Impact on your immune system and your overall health.

In fact, through your Positive Mental Attitude, it will help you push forward through ALL of the obstacles on your path that you are now walking on.

Talking and sharing our experiences with other people helps us see that we are not the only ones with problems. Feel free to come and vent with whatever is on your mind from time-to-time.

Often the act of writing and the ability to “SEE” your feelings leads to therapeutic insights and solutions..

In the interim, you may want to start taking a multi-vitamin, and some Omega 3, because it is all up to YOU where YOU want to be.

Exercise at least three times per week for a minimum of 30 minutes per day, as this will do you good to help keep that unnecessary stress away.

"Don't Give Up, Don't Give In... Cause it is ALL within you to WIN!"
« Last Edit: December 16, 2006, 04:31:35 AM by Eldon »

Offline suzieque

  • Member
  • Posts: 61
Re: Newly diagnosed, numb and bewildered...
« Reply #3 on: December 16, 2006, 04:42:49 AM »

     Hello,
         Love and hugs to you!! This is a great place to share and not feel alone. I am in a pos/neg relationship and would be happy to talk to you about this, or anything else. You WILL come through this time! Life can still be wonderful!! Be kind to yourself. Lovely that you have a loving a supportive partner.
                    Best, best wishes :)
                              Suzie

Offline jordan

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  • Posts: 239
  • What I want is a celebration
Re: Newly diagnosed, numb and bewildered...
« Reply #4 on: December 16, 2006, 05:10:25 AM »
JP:

Sorry to hear about your diagnosis and what occurred on my birthday (Nov 28).  Having been diagnosed myself in February of this year, I can only assure you that things do get better with time, love, and tenderness.

Like you, I was not sick (not even a cold) for two years before I noticed a swollen lymph node on my neck - the last thing I thought it would be is that I was HIV positive.  Especially, since I had stopped drinking two years prior and rarely dated.  However, I was in for the shock of my life - that which I feared the most had indeed come true.

Looking back now, I can honestly say that I have awakened from my fog and truly I am showing up more fully for life - in that aspect it's a blessing.  Remember, every cloud has a silver lining and even though you can't change the past you choose to not let it prevent you from living in the present!

Having been where you are at, I can speak from experience.  The important thing I would let you know is to have faith and maintain the best attitude you can - when your mind starts to think negative thoughts swtich gears and affirm something good.

I think back now and the first week I found out I literally thought I was going to die the next day.  I was filled with horrible thoughts and the worst fears. It is not the end of the world, it's only a new chapter in your life.

The dazed and confused feeling will eventually subside.  Just believe that with faith and a great attitude you will still be able to do everything you are doing.

Peace,

Jordan
If you think your lonely now, wait until tonight.

Offline Ann

  • Administrator
  • Member
  • Posts: 28,134
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Newly diagnosed, numb and bewildered...
« Reply #5 on: December 16, 2006, 08:44:40 AM »
Hi JP, and welcome to the forum.

I can't help but wonder if your initial positive diagnosis was confirmed with further antibody and Western Blot testing. The reason I'm wondering is because it would seem that you have tested through your primary care doc, and they aren't always up on hiv issues. If yours was, he would have also ordered a CD4 count, which makes me wonder if he ever ordered confirmation testing.

Your very low viral load also makes me wonder. Sometimes a low count like that is indicative of a "false positive", something that is fairly common and the reason why PCR (viral load) testing is not used for diagnostic purposes.

Make sure your initial positive antibody test was confirmed. If it wasn't, make sure they do confirm it. OK? Hang in there, either way, you can get through this.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline mrtallguy

  • Member
  • Posts: 199
Re: Newly diagnosed, numb and bewildered...
« Reply #6 on: December 17, 2006, 09:37:14 AM »
HEY JP,
SORRY TO HEAR OF YOUR DIAGNOSIS.....I WAS SHOCKED TO FIND OUT ABOUT MY STATUS AS WELL.  A FRIEND OF MINE FOUND OUT THAT HE WAS WITH A GUY WHO TESTED POZ AND SO MY FRIEND WENT TO GET TESTED.   I WENT WITH HIM TO BE SUPPORTIVE AND ALSO BECAUSE I HAD NOT BEEN TESTED IN A WHILE.   HIS TEST CAME BACK NEG AND MINE CAME BACK POZ....A TOTAL SHOCK TO ME!  SO I UNDERSTAND YOUR NUMB FEELING.  I DID NOT REALLY DEAL WITH IT FOR ABOUT 6 MONTHS.  WHEN I DID START DEALING WITH IT I RELIED ON A POSITIVE ATTITUDE, FAITH IN THE POWER OF GOOD, AND A REGIMEN OF VITAMINS AND SUPPLEMENTS,WHICH KEPT ME OFF MEDS FOR 3 YEARS.   I STARTED MEDS 6 MONTHS AGO AND I AM STILL ADJUSTING TO THE PROCESS AND EFFECTS.   THE GOOD NEWS IS THAT: 1)  YOU HAVE FOUND OUT EARLY 2) THERE ARE ALOT OF TREATMENT OPTIONS AVAILABLE 3) YOU HAVE A GREAT PARTNER 4) YOU HAVE SUPPORTIVE FAMILY AND FRIENDS 5) YOU HAVE THIS WEBSITE WHICH IS FULL OF GREAT INFO! 6) NEW DOORS WILL OPEN AND NEW OPPORTUNITIES WILL PRESENT THEMSELVES THAT YOU NEVER THOUGHT WERE POSSIBLE IN YOUR LIFE!

KEEP YOUR CHIN UP!

BE WELL  :)

CRAIG
I AM DETERMINED TO SEE THINGS DIFFERENTLY!
--ACIM

Offline JPinLA

  • Member
  • Posts: 148
  • Cheers!
Re: Newly diagnosed, numb and bewildered...
« Reply #7 on: December 17, 2006, 10:23:06 AM »
Thanks to you all for your support and suggestions!  I feel like I am not alone even more now than before.  I am taking everything one minute at a time.  The most difficult part will be accepting and dealing with being positive but not letting it define or consume me.  I am also very nervous about my sexual relationship with my partner. I know this will take time but it's mistly due to my fear of infecting him somehow (although we weill be safe(r) than we ever have been).  Thanks again and I know I will enjoy this site!!

11/06 - Diagnosed - VL/5784 & CD4 326
2/07 - VL/6000 & CD4 290 2/07
3//07 -Began Truvada/Viramune 
4/07 VL/undetectable and CD4 320 22%
7/07 VL/undetectable and CD4 286 22%
11/07 VL/undetectable and CD4 302 26%

Offline cologuy

  • Member
  • Posts: 6
Re: Newly diagnosed, numb and bewildered...
« Reply #8 on: December 18, 2006, 09:05:18 AM »
Hi.  I was diagnosed on 11/27, so that makes me a day older and wiser than you.  ;D  I want to give you advise but everyone's been doing that I'm sure.  I'm glad you have a partner to help you through this.  It sounds like you know a lot about the disease already.  Your viral load is low, so that's great.  Hang in there.  I'm trying to and I really don't have anyone but a best friend to tell.  I have told some friends in Florida, but that's about it. 


Offline marco23

  • Member
  • Posts: 392
Re: Newly diagnosed, numb and bewildered...
« Reply #9 on: December 18, 2006, 03:54:05 PM »
Continue practicing safe sex...to me, that's what love and respect is all about - safe sex. That's true love. As long as you practice safe sex, you'll be fine.  Whenever you want to unload, we're here...........unloading always helps.
Don't hide your hurt, pain and feelings inside..for they will harden your heart.

Offline koi1

  • Member
  • Posts: 713
Re: Newly diagnosed, numb and bewildered...
« Reply #10 on: December 23, 2006, 03:54:59 PM »
Hey JP in LA,

I am in the same boat as you are, but my boat is closer to the iceberg. I tested positive on the 20th of November. My story is on this board labeled " tested positive 11/20." You are in a good place as far as your numbers. I am 97 Tcells and 23,000 viral load. I think that I may have had this disease for 6-10. I suspected something was wrong because of mysterious digestive problems, and wasting. I guess I was in denial. Nobody is ready for this kind of news. I tested at out of the closet and the Gay and Lesbian Center.

It seems that you have a great support system and that will help a lot. Your partner seems to want to get you through this, and that is great. Remember that you will probably be healthy for long time. I have no choice but to start meds next week. I have a lot of hope and with your numbers you should too. Remember that attitude is very important.

I am lucky I have a great team at Kaiser. I also scour the internet for info, but remember to filter it. Anyway, don't feel guilty or ashamed because you think you should know better. I realize that I fucked up and was stupid, but now is the time to be smart and take care of myself, for me and those around me who love me. I am in Los Angeles too. It would be nice to talk to someone newly dealing with this.

Take Care.

rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline rick21007

  • Member
  • Posts: 286
Re: Newly diagnosed, numb and bewildered...
« Reply #11 on: December 23, 2006, 09:57:09 PM »
I just joined AIDSmed forums today.  I might be the newest kid on the block in terms of being diagnosed: a week ago Monday.   I was at work when the doctor's office called.  It took everything I had to get through the rest of the day.  I came home, called my brother who was a wonderful support and called my boyfriend.  Telling him was the most difficult part for me.    He was out of the country but I promised to tell him as soon as I found out.  The one right thing I did, for which I will always be grateful is that I was tested before we started a physical relationship because I did not want to put him at risk.  Still I knew the news would hit him like it hit me earlier that day.  I knew that he would stick beside me.  In fact it brought us closer together than ever before.  He had just arrived at his hotel  when I called and the next day he told me he did not sleep that night but walked the streets worrying about losing me and wishing he could be with me.  That was the hardest part of the first few days for me worrying about him worrying about me.  I  believe the trauma of finding we have hiv may not be as great in some instances as for those who love us and are faced with the fear of losing us.

I am fortunate to have access to good medical care--to a great primary care physician who gave me the exam of my life.  ( I had been running high fevers--not due to hiv but to a urinary tract infection it was determined) and to a very good specialist to manage my hiv. I am fortunate to have a brother who has been a wonderful support---he lost a partner to AIDS several years ago.  Yesterday I received flowers from him.  I say my gratefuls every day. And I am grateful to find this forum.  It is kind of strange but it feels like I have been initiated into a fraternity of people I do not know but with whom I feel a heart connection.  With all who are struggling, I feel connected to you, and with all who are living full,productive and meaningful lives, you are an inspiration and an encouragement, and especially to all of you who have overcome so much, thankyou.

I have a question and I can't find this topic listed:  Is there a definitive narrative on having safe sex?  I have had 3 courses in the past on bloodborn pathogens and have read the standard drill but I am not finding information that I believe is adequate. "Use a condom" hardly covers it!  For those of us with neg. partners this is really critical information, as well as anyone who plans on living a full and meaningful life to include an intimate relationship with another human being.

Anyway, hugs to all of you.   Rick in Oregon

Offline JPinLA

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  • Posts: 148
  • Cheers!
Re: Newly diagnosed, numb and bewildered...
« Reply #12 on: February 03, 2007, 07:48:59 PM »
Howdy folks!

It's been sometime since I last posted.  Since I intially posted I have changed Dr's. to a wonderful guy specializing in HIV/AIDS.  I have had a second round of tests with my CD4 count at 328 (about 25%).  I am currently waiting for a second test to confirm this low (my Dr considered this low enough that if it was this low the second time we would consider starting treatment) count.  I hate waiting.

OK, so that's the lab test info. but here's where I am at mentally.  I waiver between numb, denial, completely freaked out, eerie calm and acceptance on probably a daily basis.  It's a little Sybil, but it passes the time.  I realize acceptance will come with time so I am dealing with my feelings pretty well with the help of some friends, counseling, family and a wonderful partner.

One of my favorites of coming to terms with having HIV is, ever since my diagnosis, if I have a sniffle, cough, hot flash, cut or even if I floss to hard I FREAK OUT and have a mild-to-major panic attack and am poised to go the emergency room or call my Dr.  Although my Dr. said that as long as my CD4% is in the normal range that I should treat these symptoms as someone without HIV or a compromised immune system.  Easier said than done.  I currently have a rash on my right hand and a couple of raised splotches that I think are warts.  So, naturally, I'm flipping out, but am waiting to see if it clears in 48 hours (it just started this morning).

The Sybil mood today is doom and gloom folks.  I am feeling ruined today.  I feel like I ruined myself, my chance at a normal life and my partner's life (he's negative so far, we've been together 9 years).  Does this feeling ever end?

I was writing to vent a little but also to hear the stories of others and to feel a little less alone than I am feeling right now.

So, I'm off to hang out with some of my moods, have some dinner and, hopefully, relax my mind for at least 10 minutes.

JP
11/06 - Diagnosed - VL/5784 & CD4 326
2/07 - VL/6000 & CD4 290 2/07
3//07 -Began Truvada/Viramune 
4/07 VL/undetectable and CD4 320 22%
7/07 VL/undetectable and CD4 286 22%
11/07 VL/undetectable and CD4 302 26%

Offline rick21007

  • Member
  • Posts: 286
Re: Newly diagnosed, numb and bewildered...
« Reply #13 on: February 03, 2007, 10:45:31 PM »
hey JP----sorry to read that you are having a rough time of it, but glad you decided to write and update us.  I was just looking at my post of December 23rd on this thread and thinking how much I have learned, and largely on these forums since then.  (I was diagnosed two weeks after you were.)

It seems like the emotional roller coaster pretty much was over for me after the first week, but I am not sure why that was.  I had a nasty OI I was fighting and even when I wrote that post I was feeling crappy--as I remember Christmas day I started feeling semi-normal.

I know that I decided that if this virus was going to survive in my body I was going to give it the fight of it's life---kinda turned the tables.  I didn't feel so helpless then. It also really gave me perspective to read what other people have to deal with.  I decided I didn't know what misery was, at least yet.  So I stopped sweating the small stuff--like the night sweats.  I also have to give credit to a great support system-most of all to my husband and my brother.  They have been there for me.

Also really helps to have a good hiv doctor which I do.  I feel like the management of my general health is in competent and caring hands.

Anyway.  I hope you get out of this funk and that things will seem brighter for you real soon.

Best, Rick

 


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