just passed 1yr poz...

[ruralguy]

I've just passed the 1 year mark of being poz so I thought I'd post something reflecting my journey here for newbies to read.  The short story is that the crisis passed and life is pretty normal again.

The first 2 months were truly the worst of my life.  I learned what an anxiety attack was!  I was hugely upset with myself for all the typical reasons.  And since I live in a small rural town, there was no friendly ASO with a support group so I was very lost until I found these boards and was able to exchange my thoughs while going through all this with other people in similar positions. 

In mid-September I started on Atripla and had some startup side effects but nothing serious and within a month went undetectable and saw a nice bounce in my CD4 count.  And I felt better, much more my normal self.  Then after about 6 weeks I switched to taking my dose in the morning which resolved lingering issues i was having sleeping.  It took my many many months to sort out my insurance to pay for the meds....wow are they expensive.

At this point I can take atripla at any time with or wothout food and have no issues with it.  I remain UD. Most days I don't think about HIV....but then my date for a checkup and blood tests arrives and I get somewhat freaked out again.  It has changed my sexual activity in some dimensions but not all .... I have a great partner and a 3rd we play with who helped me greatly in this regard. 

So the net of it is that after about 12 months life has pretty much returned to normal.  It isn't completely the same as 'before' but life changes all the time anyway and it is not clear what changes are due to being poz and what are just the normal forward march of living.  I pay alot more attention no to listening to other people's health issues but I don't share that I'm pos....I can't see any reason to do so.  What would I expect from someone I shared this with? But life goes on happily and the horrible crises of the first months faded.

[skeebo1969]

  Hey ruralguy I am glad you have adjusted to life with HIV and thanks for sharing your experience for the newly diagnosed to see.

[ElZorro]

Then after about 6 weeks I switched to taking my dose in the morning which resolved lingering issues i was having sleeping.

I'm debating trying to take my Atripla in the morning as well. I'm curious as to how you did it? Do you just skip one night time dose and then take it when you wake up? Or, do you take one before bed and another when you wake up?

[ruralguy]

I adjusted it ahead, 26hrs, for a couple of days until I was taking it around 6:30 or so. 

I like it better.  It fits my routine easily and my morning routine is way more regular than my evening routine. It take it first thing when I wake up.  I use a 7day pill case to get it right.

The major benefit is I sleep fine now.

[Inchlingblue]

  It took my many many months to sort out my insurance to pay for the meds....wow are they expensive.
 

Thanks for the update, it's great to hear you're doing well

I was wondering if you could give a little more detail about the insurance. Are they paying for the meds?

[max123]

hi rural,

you did a great job sorting through all and staying on track...that's something to be proud of.

max

[Andy Velez]

Rural, it's good hearing about your year and how you have made it through. I am sure there will be others who will be helped and reassured by what you have had to say.

Keep going and doing well.

Cheers.

[ruralguy]

Thanks guys   And thanks Andy.  You and Ann do an incrediable job here and I deeply appreciate it.

To the question about my insurance.....here is what happened.  Much to my surprise it turned out my insurance had a $5000 annual limit on meds.  Well, atripla cost a minimum of $1700 a month so that didn't last very long and I was caught completely by surprise.  Also, I was leaving the states for 4 months and, well having no alternative, I had to buy it.  The Costco online pharmacy turns out to be the cheapest.  I live near the canadian border but didn't get as far as checking to buying it in Canada.

So, while I was away, health care passed and I spent time looking into New York State insurance law.  The health bill didn't change anything short term for me.  But NY State law requires that, if I had some kind of insurance, then a new company has to accept me regardless of existing conditions.  So I am in the midst of that transition.  So far so good.  I'm about to get my first 90 perscription filled later this week.  So, the lesson is if you are in NY State, and you have the most minimal coverage, you can buy better coverage.  Surprisingly, no one in the ASO or HIV community here ever menitioned this part of NY law to me.  I just stumbled on to it by myself.

[Inchlingblue]

Wow, that's good to know.

Is your insurance through your job? The new policy is probably more expensive, isn't it? One thing is to guarantee that you can buy insurance which is great but if it's very expensive there are many people who wouldn't be able to afford it anyway.

I have insurance but I try to keep myself informed about my options in case I were to lose it. That's one big drawback to livin' in the USA.

[ruralguy]

Inchlingblue-  I'm in a situation where I have to buy my own insurance.  "Direct Pay" is what it is called.

You are right that the old insurance with the $5k meds limit was cheap - only $530 a month.  The new insurance is $930 a month so, yes it is $4800 a year more expensive but without it I'd be paying around $15000 a year out of my own pocket for meds.

Most people have no idea what health insurance actually costs.....

[Hellraiser]

Inchlingblue-  I'm in a situation where I have to buy my own insurance.  "Direct Pay" is what it is called.

You are right that the old insurance with the $5k meds limit was cheap - only $530 a month.  The new insurance is $930 a month so, yes it is $4800 a year more expensive but without it I'd be paying around $15000 a year out of my own pocket for meds.

Most people have no idea what health insurance actually costs.....

Jesus Christ, 12,000 a year for medical insurance.

[ruralguy]

yes, well it beats $20,000 a year just for the meds....

And yes, about $1000 a month (plus or minus $200) is what insurance costs everyone.  You may not pay it...if you are lucky your employer pays it.  But that's what it costs.

[phildinftlaudy]

I am so grateful that since being diagnosed I was first at a low enough income that I qualified for Ryan White and the local public hospital's charity program.  Then when I became employed at a higher wage position and had to go on meds - my insurance kicked in at the same time.  I pay no insurance premiums out of pocket; only $30 copay to see my ID doc; and $40 for a 90-day supply of Atripla.  I also have no prescription drug limits.  Very grateful.

I have a friend 20+ years positive who is self-employed and paying almost $1,200 a month for his insurance.

[ruralguy]

Yes, $1200 a month isn't unusual.....you are lucky.  As I mention, around $1000/month per person and up is the norm for everyone.  It's just that most people have no idea since they don't pay it directly.  Health benefits from employers are a big deal, but then there's the rest of us who can't get insured that way....

[Miss Philicia]

For context, I used to manage a non-profit 20 years ago and recall our policy only being something like $230 per employee per month (and we only had four people on the policy so it wasn't some gargantuan group thing).  And this was your old fashion indemnity policy (i.e. not an HMO, no referrals for anything required... just go to see whomever you want) and maybe just a $3/5 co-pay on prescriptions.

[phildinftlaudy]

Wow Ms. P --- Those were great benefits...
Why is it the insurance companies give such a big break to businesses - even small ones
Then when you have insurance, the insurance company only has to pay $900 for an ER bill of $12,000, but if you don't have insurance the hospital expects that you will pay the whole amount??

[Miss Philicia]

Wow Ms. P --- Those were great benefits...

My point mostly was that was what was standard back then.  This is the policy I had when I first went on HIV meds.  After the Clinton healthcare failure insurance companies quickly forced everyone into HMO's saying it would keep costs and premiums down while maintaining benefit levels.  Instead they raised premiums yearly and decreased benefits.  I saw all of this on a yearly basis as it was my responsibility to negotiate the group policy with our broker annually. 

[Hellraiser]

Not sure where I read it but I've heard that most US citizens spend 18% of their income on healthcare and in less than 10 years it will rise to 33% of your income.  This was of course before the healthcare reform went into effect.  I really wonder what the hell our country's healthcare will be like in 30-40 years

[dtwpuck]

Hey ... congratulations on coming out of the darkest part of this journey.  As time goes on, you will find that it does, in fact, get better.  You might even start to have days where you don't think about it.

Hope life continues to improve for you.

Scott

[ruralguy]

Thanks Scott.  Your characterization of it as the darkest part of the journey is important...it is...but I posted my 1yr note here so people know that even a year later, it's ok.  People just starting need to know that.  i sure did!