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Author Topic: It hurts so much.............. Week 2  (Read 5766 times)

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Offline Ihavehope

  • Member
  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
It hurts so much.............. Week 2
« on: December 14, 2006, 02:32:01 PM »
I feel sooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooo bad.

Unfortunately or Fortunately I live very close to my parents and sisters. I was diagnosed on December 6 with HIV. At first I was numb then fear and now hopelessness. What hurts the most is to look at my parents eyes and sisters eyes and pretend like nothing is wrong. I have bags under my eyes for not being able to sleep for more than a week. They have noticed and I haven;t been able to eat. I read so many articles that say that better treatment is avaiable and being studied but I am afraid of BOTH starting meds and not starting meds.

I am so confused. I am so down that numb that I dont know if emotionally I will feel any better. I am so afraid to tell anyone but I feel like people will start to notice the decline of weight and the way I act that it will be inevitable.

Why can't these Pharma co.s hurry up and get us better treatment.

   
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline woodshere

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  • ain't no shame in my game
Re: It hurts so much.............. Week 2
« Reply #1 on: December 14, 2006, 03:27:43 PM »
Ihavehope,

What a great name.  It reflects us all.  You have received some life changing news.  However it is definately not the end.  Take a deep breath, in all likelyhood you are going to be around these forums a long time!!!

If you just tested HIV+, your probably don't know what your CD4 count & percentage is as well as what your viral load is.  It might be your numbers are great and indicate starting meds will be no time soon. Or you might be where I was this part March and had no choice but to start immediately.  Regardless of when you start the great thing is that they do help.  Sure there are side effects for some and for others like myself there have been none. 

If anything testing positive has changed my outlook on life.  I feel better than I have in a long time both mentally and physically.

I wish I could tell you what to say to your family, but I can't.  That is something you must feel your way through.  I would definitely not tell them anything until you have a clearer picture of your health and can better understand where your life is now and where it is going. 

One final thought, check out these forums they are great.  You can learn so much.
The Best to You,
Woods
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline Longislander

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  • Posts: 2,486
Re: It hurts so much.............. Week 2
« Reply #2 on: December 14, 2006, 07:11:03 PM »
Hey, good thing you found aidsmeds. This place will be a sanity saver for you, look around and read. Post what you're thinking and feeling and get comfortable.

Take your time in deciding who to disclose to, if anyone at all yet.
Get an appt, and get lab results first!
I was infected just over a year ago, and tested positive 12/10/06. My lab results are below my signature. I'm not on meds yet. I thought EXACTLY the way you did. The only reason people suspected anything was amiss was in the way I acted. If I didn't at least change that  when in front of people, the jig would have been up!Get ahold of your sanity and your emotions first, then deal with the rest of it.

I wish you the best. Let us help you.

Paul
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline PositivelyYours

  • Member
  • Posts: 133
Re: It hurts so much.............. Week 2
« Reply #3 on: December 14, 2006, 07:13:03 PM »
Hello Ihavehope,

It is unfortunate that you have tested positive.  It wasn't too long ago that I experienced the same feelings.   I tested positive on August 10, 2006.  I received my bad news over the telephone while at work. It was the worst day of my 35 years on this earth.  Just as my friend Woodshere said, It is not the end of the world. Sure you are HIV positive but you aren't the only one - All of us are positive.  We are all in this until the bitter end!  When I found out about my results, I called a friend and told him first.  He has been positive since 1995.  I also called and told another friend who has been positive since 1988.  All I am saying is take some time for yourself and get adjusted to this new chapter in your life.  What helped me is I took three days and mourned about my status.  After those three days I started thinking this thing through, reading as much information as possible and talking to my friends who have been positive for many years.  You will with God's help find the strength to overcome your fears, thoughts and any other emotions you are experiencing.  As for the medication, I am currently not on medication. My first set of labs my cd4 was: 240/VL 39,000, Second lab results: cd4: 359/VL 50,000 and my Third set of labs: cd4 509/VL 76,000.  I know the time will come when I will have to have medication to fight this virus for me.  My doctor and I have discussed Atripla and I think that is the med that I will start.  My advice to you is to take a deep breath and take one day at a time.  When the time is right - You will share this new chapter in your life with friends and family.  Disclosure should be an afterthought until you have had time to accept your illness.   Please feel free to send me a private message or hit me up anytime.  We are all praying and wishing you well.

PositivelyYours
PositivelyYours

Diagnosed: 08/10/2006
08/31/06 CD4:240/VL:39,000
09/12/06 CD4:359/VL:50,000
11/16/06 CD4:509/VL:76,000 (Flu Shot)
02/13/07 CD4:270/VL:69,000
02/17/07 Developed the Shingles
02/20/07 CD4:326/VL (Not Tested)
03/20/07 CD4:484/VL:54,000
06/19/07 CD4:488/VL:51,000
09/18/07 CD4:372/VL:27,000
10/09/07 Took Flu Shot
12/18/07 CD4:408/VL:85,000
03/18/08 CD4:394/VL:116,000 (Still No Meds)
05/22/08 CD4:412/VL:63,000
08/13/08 CD4:362/VL:67,000
09/23/08 Took Flu Shot
10/15/08 CD4:340/VL:54,000
11/14/08 Started Atripla @ 9:45 p.m.
1/30/09 CD4:641/VL:<48 Copies
5/07/09 CD4:667/VL: Undetectable
12/02/09 CD4:759/VL: Undetectable
03/05/10 CD4:537/VL: Undetectable
03/16/10 Rec'd TB Skin Test, Pneumonia & Hep B Vac
04/15/10 Hep B & Tetanus Vac
6/10 CD4: 748 VL: Undet.

Offline Eldon

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  • Posts: 2,664
Re: It hurts so much.............. Week 2
« Reply #4 on: December 14, 2006, 11:27:08 PM »
Hello Ihavehope...

Your screen name says it all. Truly, this is a shock to you as to find out your status of being positive. In fact, it is an uncomfortable feeling. It does get better as you work through this newly added portion to your life.

BREATHE!!!

Now, take it one day at a time. Right now, you are in the middle of acceptance and readjusting to this impact on your life. There are a number of different emotions that you are experiencing and it takes time to sort through them all.

Here, you have the OUTLET that is needed in order to talk about your feelings that you have inside of you. We all can relate to what you are experiencing as we have all gone through that initial stage of shock. You are not alone. Remember that.

ANYTHING you need to talk about, feel comfortable to come here and do so.

"Don't Give Up, Don't Give In... Cause it is ALL within you to WIN!"

Offline Lakis

  • Member
  • Posts: 83
Re: It hurts so much.............. Week 2
« Reply #5 on: December 15, 2006, 04:23:49 PM »
U have to believe in yourself, in power of positive thinking....make plans for ur future.And believe in them. U GONNA MAKE IT!!!
After 16 years with HIV I know what I'm talking about....just be strong :-)
Lakis

Offline koi1

  • Member
  • Posts: 713
Re: It hurts so much.............. Week 2
« Reply #6 on: January 01, 2007, 05:44:23 AM »
Your reaction is natural.

And, It is not the end of the story, just the start of a new chapter. Remember that though it is different for everyone, as some of us adjust quicker and better than others, the road up ahead is not an easy one. But, the meds are on our side, being infected at a time when this condition is managable.

As far as disclosure, wait until you have calmed down a bit. You will be able to explain things better when your head is clear (should you choose to disclose).

Being newly diagnosed, there are a lot of what ifs in our heads now. But people here have promised me that if I follow my future treatment plan, things will get better. I believe them, their stories, their hopes and dreams...for they have walked in these shoes. Know that you still have a lot of good things to experience and you will put the pieces together.

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 jordan

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  • Posts: 239
  • What I want is a celebration
Re: It hurts so much.............. Week 2
« Reply #7 on: January 01, 2007, 07:34:58 AM »


Sorry to hear about your recent diagnosis.  As mention in the previous posts....it's good that you found this forum which will provide great support and answer a plethora of questions.

There is hope and living with HIV is totally manageable. 

You are still the same person you were before the diagnosis.  The best advice I can give is to not live in fear. 

Stand up and make the decision to be happy and take charge of your life.  Negative emotions such as fear (false emotions appearing real), hate, and anxiety will only exacerbate the situation and block your healing.

Surrender to your Spirit.  I've said in previous posts....what worked for me is to operate under the philsophy as "business as usual."  Unless the person truly understands HIV, it's probably best that you don't disclose your status until you have equipped yourself to understand and explain your situation.

Until you reach that point in time you need to fake it until you make it. 

Peace,

Jordan

« Last Edit: January 01, 2007, 11:47:29 AM by jordan »
If you think your lonely now, wait until tonight.

Offline rick21007

  • Member
  • Posts: 286
Re: It hurts so much.............. Week 2
« Reply #8 on: January 01, 2007, 11:43:04 AM »
I was daignosed recently myself---3 weeks ago today as a matter of fact.  What has gotten me through these first weeks has been the things I a have learned being a person in recovery.  And most important of all that I can't make it by myself.  This forum has been a huge blessing in a lot of ways---feeling the support and encouragement of others who deal with hiv, feeling the comeraderie with others who are going through the same things, and just learning.

In real life I say my gratefuls every day for the supportive people in my life---some really skillful, compassionate doctors, my brother who lost his first lover to AIDS, and most of all to the man in my life who told me his love for me was stronger than the virus.

I said this elsewhere in a post, but I will say it again but this thought has really changed how I feel about having hiv.   I believe having hiv can bring out the best in each of us.  And I believe it can bring out the best in those we love.

There is an ancient Chinese story, the details I have forgotten, which illustrates the Taoist principle that what comes into our lives as a tragedy may be a blessing in disguise.

Un abrazzo grande!     Rick in Central Oregon

Offline jordan

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  • Posts: 239
  • What I want is a celebration
Re: It hurts so much.............. Week 2
« Reply #9 on: January 01, 2007, 11:52:55 AM »
There is an ancient Chinese story, the details I have forgotten, which illustrates the Taoist principle that what comes into our lives as a tragedy may be a blessing in disguise.



Rick:

Also sorry to hear about your recent diagnosis....it's sounds like you have a good attitude thanks to the work you've done in recovery.  :)


In Eastern philosophy (the princple you refer to in the quote) there must be an equally positive opportunity inherent in the challenge.  Here in the West, we say, "Every cloud has a silver lining."

If you think your lonely now, wait until tonight.

Offline rick21007

  • Member
  • Posts: 286
Re: It hurts so much.............. Week 2
« Reply #10 on: January 01, 2007, 12:03:09 PM »
Thanks Jordan!!  In Recovery we learn that the best way to stay positive is to encourage others.  Pretty obvious you figured this out yourself.

Rick

Offline Life

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  • Member 2005
Re: It hurts so much.............. Week 2
« Reply #11 on: January 01, 2007, 02:29:57 PM »
IhaveHope....

You know, we have all been exactly right where you are standing.   You know, we have all felt exactly the way you do.  You know, others helped us through that time and we have walked right on out of it.....   Allow the friends you meet here help you walk through this.   Never think you are alone in what you are feeling and yes, we know what its like having this secret unshared with loved ones....   Its going to change, its going to get better and you will get your life back that you never lost.....

Love

Offline Adonis

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  • Posts: 25
Re: It hurts so much.............. Week 2
« Reply #12 on: January 03, 2007, 03:59:05 AM »
IHaveHope:

I love your username and I hope that your parents and sister come through for you once you make the decision to disclose to them.

Offline rick21007

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  • Posts: 286
Re: It hurts so much.............. Week 2
« Reply #13 on: January 03, 2007, 09:17:11 AM »
IHAVEHOPE----what Adonis said about your username reminds me that en Espanol my favorite word, for which there is no exact English translation is Esperar.  It means to hope/trust/believe/wait.   It refers to an attitude and posture of the heart. There are days I hold on to that word with my life and breathe it in like a mantra.  Yesterday I was having one of those days.

Offline Adonis

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  • Posts: 25
Re: It hurts so much.............. Week 2
« Reply #14 on: January 03, 2007, 08:09:45 PM »
Hey Rick:

You sound like a very spiritual person....do you believe in spirituality? I believe that we are here to learn lessons and experiencing adversity is all a part of our plan to evolve.

Offline rick21007

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Re: It hurts so much.............. Week 2
« Reply #15 on: January 03, 2007, 11:25:55 PM »
Hey Adonis.  I am not sure how far I have evolved and I have had a fair share of adversity.  I find there are times that I still could  use close supervision by a responsible adult.  Had I had that a few months ago I would not be a poz today you know.

Seems to me that this forum is as spiritual a place as I have come across.  Awesome folks here! 


Offline rick21007

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Re: It hurts so much.............. Week 2
« Reply #16 on: January 03, 2007, 11:35:40 PM »
I was scrolling down through the messages on this thread.  Seems to me the folks here are all pretty spiritual.   IHAVEHOPE, what do you think is the thing about you that has drawn all these awesome folks to you??????  Interesting thought, isn't it!

Rick

Offline dtwpuck

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  • дано мне тело, что мне делать с ним?
Re: It hurts so much.............. Week 2
« Reply #17 on: January 14, 2007, 02:08:41 PM »
We all like to say that since we've been poz a long time and know everything that it's not the end of the world, that the sadness will abate and that you can deal with this.  We all have been there.  We all survived. 

I don't think that makes it any easier.   When you look at yourself in the mirror, look deep.  Look at your eyes, dried and red from tears.  How do you feel?  Deep inside there is a person trying to come to terms with the handful of lousy cards he has just been dealt.  There is so much advice floating around that what you are feeling is normal and OK.  What does that mean?  How does it make it easier?  You are a human being.. you are dealing with pain, loss, the intimate realization that you are suddenly mortal. 

But, my friend, you ARE alive...   keep looking.  The pain is great, but it makes you human.  When you learn that you are strong enough to deal with this lousy hand .... you will find, I hope, that you are blessed with a family who undoubtedly loves you and friends and family you love as well. 

There is no right answer.  No reassurances can make you feel that this will all be OK.  But if you look and don't turn away... you can face yourself and your fears and give an honest answer to the question "there is a way to deal with this without losing my humanity.  Do I have it inside of me to find it?"
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline Catman

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    • Who is the Catman?
Re: It hurts so much.............. Week 2
« Reply #18 on: February 03, 2007, 09:42:07 AM »
Well after sharing a PM with you I find this post. Now I can get a clearer picture of you. First of all, that hurt that you feel at the beginning should go away with time. I got over it quickly because I kept moving forward and giving hiv very little thought. I was too busy for that crap. I have lived normally for 21 years being positive and I do have my appointments and labs and I do take my meds just like I take my vitamins each day. You just make it a habit to take better care of your health and continue through life as a negative person does. Don't hold back because you are positive. The hell with worries about what's going to happen next. Don't even clouden your mind in thinking about your appearance changes in the next coming years. You are beautiful no matter what, and that image should be in your mind always. You ARE NOT the hiv. It is only a part of you like having a Siamese brother or sister attached to you. You are the boss and not the hiv. Keeping healthy is your best weapon. And when you do get sick, just take your meds and get over it. You must be strong and that will keep you going like it has me and many others on this thread. We are fighters and no enemy like hiv is knocking us down, yet.
Disclose only if you think your relatives are not going to overreact. If you don't think it will be accepted without a fuss, keep it to yourself until the moment is right. I personally have kept the secret for 21 years to myself and have reached a point where it is no longer necessary to mention. I look and feel great so why should I spoil other peoples tranquility who then are going to be more worried that I am. I even forget for days that I'm positive and even get confused of my medications thinking they are all vitamins that get me going. Really, it's very hard at the beginning and it might make you mature quickly because we start seeing life from a different perspective than non positive people. We do LIVE each minute conscious of everything we make out of each second. Don't waste your time feeling miserable because life is too precious to waste. My way of thinking did not come in an instant, it came after my times of deep thought and I too have had my share of "suffering" being positive. It might have been different if I had found someone or someplace like this forum to get my fears and questions out. This is the best place to hide and talk about your hiv status. I don't mean hide as in embarrassed or something like that. I mean by "hide" in meeting in "private" and feeling free to talk without being judged. Take advantage of this web page and it will be easier for you to get through the initial phase. And feel free to email me if you feel a bit down. Step #1 Make your "health" your priority in life and when the time comes to begin your meds, just take them and make the routine as many of us here. It's not easy, but it's necessary. Keep in touch on this web page... ;) I'm sending you my "Happy Cat" to keep you company! ;D


[attachment deleted by admin]
« Last Edit: February 03, 2007, 09:47:26 AM by Catman »
Catman

Meow to the birds
Meow to the tree's
Meow to the end
of this dreadful disease...

 


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