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Author Topic: I just tested pos last thursday need support and advice  (Read 3922 times)

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Offline Pammypoo

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I just tested pos last thursday need support and advice
« on: July 06, 2009, 09:50:34 PM »
So I have had multiple lumps in my lymph nodes for a while they did a ct scan and scheduled a biopsy. Before they did the biopsy the results came back positive for HIV. I am lost I don't know what to do. I still can't believe it. I had blood work done and they said it will take some time to get the results of my levels and whatever. I am having anxiety attacks and just tired and week. I am afraid to go back go work. What do I do now? I have told only one person. And he isn't very helpful. Any advice would be very appreciated. Thank you!

Offline positivmat

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Re: I just tested pos last thursday need support and advice
« Reply #1 on: July 06, 2009, 11:28:38 PM »
Sorry to hear about your diagnosis.  Believe me when I say that it gets less and less traumatic. This is a terrible time in the days immediately after the diagnosis. I have been diagnosed for 5 months now and my panic attacks have gone away and I smile and laugh every day now. You will be able to get through this. You need to develop a strong support network. If you don't want to tell more friends, then go to a support group, a therapist, and use these forums. You will find that hiv+ people can be happy and healthy. But now it will be very difficult and you will have a lot of questions and anxiety and maybe strong depression. This is the time to reach out as you have done here. See your dr about your upcoming blood work and make sure he has confirmed your diagnosis with a western blot test. Get plenty of rest and stay calm.

If you can ask this one person that you have told to give you more support right now, that would be helpful. Your emotions are running high and a friend to stay with you would be wise now. You are a valuable person and these strong emotions will pass and you will adjust. Reading the previous postings in this "just diagnosed" forum will answer a lot of questions.
Take care

Offline Pammypoo

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Re: I just tested pos last thursday need support and advice
« Reply #2 on: July 06, 2009, 11:47:38 PM »
Thank you for the response. My doctor said they did 2 tests and they were both pos would that include the test you mentioned? I think one of my biggest concerns is that I had gastric bypass surgery almost 2 years ago and I have lost over 200lbs. Which means my body dosent absorb meds I guess like normal. I have been enemic for a while now my body isn't absorbing the iron that I need. Also I am a single straight female, I went thru the weight loss to try and finally be happy with myself and enough self respect to find a decent man. I feel like now I will never find someone. Omg I am sorry I am rambling, my mind is moving in a million directions so many ?s. I am usually the one to listen to everyone elses problems and being there for everyone else. Here I sit alone and scared and I don't know how to ask for help or what I even need.   

Offline positivmat

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Re: I just tested pos last thursday need support and advice
« Reply #3 on: July 07, 2009, 06:31:57 AM »
Where I am, they do the 2 tests first before they do the western blot. So specifically ask your dr if they did western blot test or look at your receipt.

Wow that is quite an accomplishment. You should be proud of yourself for losing so much weight. You will need to have the same sort of determined attitude here about this virus to keep a good frame of mind. You can do it. it is common to think that you will not find anyone now. there is a ladies only forum here. You should post there as well to introduce yourself. There are a lot of people who can help you on these forums.

Your dr will test your blood to make sure meds are working when and if you have to go on them. Some people don't go on meds for years. Just learn as much as you can now and keep your spirits up.

Offline Ann

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Re: I just tested pos last thursday need support and advice
« Reply #4 on: July 07, 2009, 10:22:44 AM »
Hi Pam, sorry to hear about your diagnosis, but welcome to the forums.

I agree with Matt that you should clarify with your doctor whether or not your diagnosis was confirmed with a Western Blot. It does sound like it was ("My doctor said they did 2 tests and they were both pos") but it wouldn't hurt to find out for sure.

A friend of mine had a gastric bypass and he doesn't have any problems absorbing meds. The fact that you don't absorb iron well might not have anything to do with the bypass - it probably doesn't.

You should read through the Lessons found on this website - they're written in easy-to-understand plain English and will give you a good base to go from. Feel free to come into the forums to ask any questions you may have after reading. Also, if you read the Welcome Thread (found in the Living forum), you'll find out what else this website has to offer.

You say you are afraid to return to work - why? You're not going to pass your virus on to anyone else through casual contact in the workplace, if that's what you're worried about. You're still the same person you were before diagnosis and although it might feel like it now, you don't have hiv tattooed on your forehead. Going back to work and getting back into your regular routine may actually help you start feeling yourself again.

And as Matt pointed out, we have a women's only forum where you can "talk" to other women who know what you're going through. If you read through some of the "Lady's threads", you'll get to know people and you'll also read stories of how other women have found love and happiness, despite being hiv positive.

Hang in there, you're going to be ok.

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

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Offline Pammypoo

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Re: I just tested pos last thursday need support and advice
« Reply #5 on: July 07, 2009, 10:51:05 AM »
Thank you both for your time to respond to me. I have been trying to find a support group in my area but not having much luck. I have called a couple places in my area that are supposed to provide services and I don't know whatever they do, but no one answered, I left a message and have not yet got a call back. I have an appt. to see the Dr. on July 21st, I think once I see her and find out my levels and see what kind of a plan we will have then maybe I will be a little more at ease. It's just the not knowing I guess that is so scary.
The thing that scares me most about going back to work is that they know I have been sick and I had told them that were going to do a biospy, and then they cancelled the biospy, I just know there are going to be soooo many questions when I go back. And I just don't know what to tell them. It would be so much easier to be able to say Oh I have cancer...you know then everyone would be supportive. I have an anxiety attack everytime I think about going back to work. I know I don't have to tell anyone, but I have to tell them something.
Thanks again for your time and the advice!

Offline positivmat

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Re: I just tested pos last thursday need support and advice
« Reply #6 on: July 07, 2009, 11:30:32 AM »
I remember when I was first diagnosed, I wanted to tell everyone. So it is natural that you might feel like you have to explain yourself to all your co-workers. I was looking for support and consolation. I blamed it on pneumonia. I still refer to my "pneumonia" when I am at my fairly widely seen job. I held back from telling everyone and tried to determine who would be supportive and useful and left it at that. You might want to do the same while it is all new. But by all means, keep looking for people you can tell. Long term survivors have been very important for me to put this into perspective. Meditation has been good for me. I also really threw myself into some non-HIV activities to let off steam. Maybe for you exercise would help since you have accomplished such a great loss of weight. Hold on to this past accomplishment and take pride in it. HIV won't take that away from you.

Offline Assurbanipal

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Re: I just tested pos last thursday need support and advice
« Reply #7 on: July 07, 2009, 12:58:53 PM »

I'd encourage you to go back to work if you can.  It helps take your mind off a new diagnosis, preserves your income and benefits ...

As far as what to tell people, well, like Matt  I had pneumonia and when I found out that it was due to AIDS continued to refer to it as pneumonia.  And it was pretty well known at work as well what with the disability leave, oxygen tank etc.  A few may have figured it out it was AIDS, but those likely to figure it out are also those likely to let you decide if and when you want to disclose more.  For the rest, it is usually just a way to express concern and solidarity -- if you don't go into details that is your choice.

But no need to adopt our illness (pneumonia).  In your case you have had lymphadenitis (see explanation here http://www.mayoclinic.com/health/swollen-lymph-nodes/DS00880).  Just say that you have seen your doctor and (s)he thinks that you will be able to treat it successfully

It's tough to get through the first few months, but a lot of the difficulties are just in thinking about what you will say -- in practice it is easy to say "lymphadenitis -- oh, and how was your vacation / how are we doing on project X / ..."

Good luck
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%
2014 VL UD - 48
2015 VL 130 Moved to Triumeq


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