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Newly Diagnosed

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On Friday, November 9, I got back the POZ results of my last test. In the week since, I got VL and CD4 numbers of 171,000 and 549 respectively. It is likely my doctor will want me to go on treatment ASAP.

It's been like walking around in a dream for the last week. As if I can't believe it's happened to me. I haven't gotten plugged into any local support groups or such, and I've had virtually no one to talk about it with.

One issue I will likely face is, I have a high ($2000) deductible, after which my insurance pays 100%. Problem is I don't have the $2000 at the moment. I've talked briefly with a local ASO and was told that because of my income I probably wouldn't qualify for deductible/copayment assistance. :( I still have to get with them in person and get that verified. The idea that I might have to delay treatment until I can gather the deductible has me not mildly stressed and worried.

Besides all of that, I'm all kinds of curious about what to expect from this disease. I've known many POZ people over the years, so I'm not totally unfamiliar. But having to go through it myself raises all kinds of questions.

Also I have little family, and virtually no friends, to whom I can turn for support and assistance of any kind. Part of that is simply a reluctance or fear of "coming out" about being POZ. My very conservative family were hard-pressed to accept my coming out as gay. All of the websites and literature I have read tell me that I am not alone. So far, I feel very alone. LOL Hopefully, in the next week or so, I will find some local support groups to join.

At this time, mine is very much a "One Day at a Time" existence. I cannot yet see how the challenges will resolve themselves, nor can I see a long term future. I hope it gets better soon.

Hello and Welcome Palliate,

Walking around in a dream-like state is perfectly normal after a diagnosis. I think it's the brain's way of putting a splint on your mind. It's a good thing.

You've come to a good place in terms of finding information, similar stories, wildly different stories and plain old understanding.

This site is my resource for all of that, but perhaps more important, it's the one place that reminds me I still have a sense of humor, there are still ridiculously funny things in the world and there are still those moments when offering help works out and it's not always a matter of no good deed goes unpunished.

I wish I had some advice regarding a clever way to satisfy your deduction -- but if there's a way -- I assure you someone will come along and tell you what they did. It sounds as if there might, (emphasis on might) be a shot that a family member could help you out. I know that can be like walking through a minefield, but if you could figure how to do it without disclosure (which reads as likely difficult given their views) then $2000 is less than $10/day to pay back.

Do you have a chance to work part-time? Babysitters make scary big money these days -- I've even considered doing some just to add to the kitty. Maybe there's something else you could do such as house sitting or pet sitting.

Okay, so enough of that. The money thing will work itself out -- regarding looking for support locally - shop as carefully as you would for a car and try to determine which one (start with one) would be best for you.

Again, welcome.

Hi there, I'm fairly new here too. Diagnosed 18th September. With regard to walking round in a daze, it took a few weeks to get through it and get my mind back on task and not every waking moment being HIV HIV HIV!

I'm sure when you get a support network in place things will seem a little more rosey, it's going to be all right - even if it looks terrifying at the moment.

I wish I could offer some advice about the cash, I just thank god I like in the UK, the NHS is awesome.

I am sorry you have to deal with so much at one time.

Here's some input on the med cost issue.

Even if your doc wants you on HAART right away, doesn't mean its a disaster if you don't start until you get the cash.  So if you start now or Jan isn't a life changing issue.

I assume that 2000 is the deductible on yearly drug/medicine expenses?  Or is it all medical expenses.  If its all medical expenses, then your tests and doctor bills are going to quickly use of that deductible right now. 

If its 2000 deductible on drugs, and you start now, November, then you will have the entire issue again in two months, in January. Correct?  Not good.

I would say you need to brainstorm how to get the cash for January. And going forward from then on. 

Also, the drug makers offer copay assistance in the USA. So you will want to figure out how those programs might fit in. 

Also make sure you tell your doctor that you can probably figure out the costs for January, but not for next week...  Not that its his responsibility, but sometimes doctors do have ideas about the cost side of things.

An HIV or social service org should be a good resource.

Some input on the loneliness.
Well, if you really really can't disclose to anyone in your real life, please do make sure you check in here rather frequently. 

But try to think of someone who you could add to your support network.  And if there is no one personally connected to you, then try to get a social worker or support group.  Its really important, in my opinion, to have both - the virtual support here, and the flesh and blood support.  Please try...  And what happened to the many HIV+ people you have known over the years.  Isn't it possible to give one of them a call, at least for a chat, coffee and some feeling that you are not alone?


Thanks to all who have replied.

The $2000 is the deductible for all med expenses. An additional factor is that I have a Health Savingas Account that allows me to save money tax-free for medical expenses. Unfortunately, until this month's open enrollment for next year, I was only saving half of what was allowed. My expenses this year have not reached $2000 and have basically depleted the savings account. And there are the visits and blood work involved in diagnosis, that still have to be paid as 2012 expenses. I upped the amount to save in the coming year, but it won't reach $2000 for a few mo'nths. One ASO suggested that I *might* not qualify for their assistance. But that has not been confirmed, and I haven't gotten to check into the other programs yet.

I am a depression/anxiety patient. I am doing relatively well at handling the news. It has, however, raised my anxiety just slightly, but I'm hanging on and not freaking out -- yet.  LOL


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