Newbie

[Rem]

Hi all,

I am a 34-year-old teacher in Ohio.  I was just diagnosed on 04/28/14.

I have been browsing the forums for about a month, soaking in as much knowledge as I possibly can.  I am incredibly grateful to find this site as it has been a wealth of information and comfort. 

I am not sure why it has taken this long to post, but I guess I am looking to just write out some of my thoughts. 

Testing positive was not a traumatic experience for me.  It was more of a, Great, one more thing I have to take care of, moment.  And then I compartmentalized the diagnosis and thought, What do I need to do now to move on with my life?  I tend to be a very analytical person.  I handle problems by making a plan, following through, and moving past it.  Not very emotional.

I called my local university's infectious disease center, made an appointment, had what looked like about 625 viles of blood drawn, waited for my results (CD4 268, 19.4%, VL 89,672), and am heading back to my doctor on the 28th to talk about beginning treatment.  Meanwhile, nothing has changed.  I wake up, go to work, and socialize just as I did before.

I am a bit worried that I should be having a different reaction of sorts.  Like I should be sad or worried, but I am not.  Initially I obsessed about how I would pay for everything, but after going through my insurance plan with a fine-tooth comb, my insurance will cover most of everything outside of a $600 deductible and co-pays, which can be covered by assistance cards from the drug companies.  So, that seems to be under control. 

At this point, I feel like once I start on medication everything will be fine.  Aside from taking an extra pill or two a day, can I expect to continue to go about my life as normal?  Can I continue to teach for the next 25 years, retire, and not worry?  I feel like nothing has changed. 

Or, am I being somewhat delusional? 

[mecch]

At this point, I feel like once I start on medication everything will be fine.  Aside from taking an extra pill or two a day, can I expect to continue to go about my life as normal?  Can I continue to teach for the next 25 years, retire, and not worry?  I feel like nothing has changed. 

Or, am I being somewhat delusional?

Well, on the one hand, your cool and analytical response to life's tribulations is yours, and authentic.

On the other hand, something HAS changed...  I think its fine for you to go about your "life as normal" and you'll just discover what the differences are. 

When I got diagnosed 5+ years ago my ID doc told me "job and plans as normal". That's been true. 

I wouldn't say that love and sex life continued in the same way, so that changed. 

You are young so will be HIV+ for a long time into the future, who knows what continued improvements medical science will deliver, for keeping HIV+ people "healthy".  On the other hand, who knows what 2 or 3 or 4 or 5 decades of HIV infection and antiretrovirals will do.  If, that is, we end up being on them for so long... The treatments will change. Will there be a cure? Who knows.

I suggest there is a sort of "new normal" that you'll discover - it will be your own, so its hard to predict if it will be a lot of changes, or just a few.

Another thing:  Remember, people will deal with you differently now, too. Its not just you deciding on your identity.  Of course, up to you how important other people's perceptions are...

While I am not telling you to worry, you should at least take note that your CD4s are not great.  You are going to want to see them come up to the safe range after you start treatment.  Though again, people who do not get a great CD4 rebound, can still do ok.   So, time will tell.

[xinyuan]

I agree with mecch.

Every person will be different in how they absorb the news.

Also, what may make it "real" to you will be different. For some, the confirmatory lab work may be enough (it certainly shook my world). For others, disclosing to another person may do it. For others still, seeing and taking the pills are it.

If and when you choose to disclose, expect a variety of reactions. You may have taken the diagnosis well. Those who find out about you may or may not. It would make sense to decide on a case by case basis regarding disclosure. And remember. You can't unring the bell.

Overall, things definitely won't be the same. Your doctor should at least monitor for serious side effects from meds early on. But eventually, the lab testing and doctor visits will become a new "normal."

It'll be a long relationship with your doctors, and I recommend being completely open with them. Depending on your lifestyle, they may need to screen for other health conditions.

As far as longer term, ideally we can expect normal life spans on antiretroviral therapies (ART's). Assuming other habits such as smoking, drug addiction, and other bad lifestyle choices aren't thrown into the mix.

[Rem]

Thanks for the responses, Mecch and Xinyuan. 

I know my life will have a new type of normal, but for some reason it doesn't feel earth-shattering.  I'm wondering if others have felt the same way.  This may sound incredibly odd, but it was almost a relief to get the diagnosis.  Like it was only a matter of time before it was going to happen.  I had mentally prepared myself for the day - and not in a morbid way.  More so in the sense of the statistical chances.   

I'm not saying I'm perfectly cool with this change.  I do have thoughts of how difficult dating will be and how people will treat me if/when they find out, but I figure I can get through it and chalk it up to, as you both said, my new normal.  Maybe right now my mind is so preoccupied with the intake of information and new learning that I've not yet had time to process the entirety of the situation. 

I also haven't told anyone, so reaching out here has been a good step in the right direction.  I'm hoping to begin treatment and see how that goes before I let the cat out of the bag. 

In regards to my CD4 count, when I saw the results, I was definitely unsettled at first.  I guess I'm optimistic with how well treatments work these days.  I'm a very healthy person - never smoked, never tried drugs, rarely drink, exercise regularly, no other health concerns.  I'm hoping my count will eventually rise to normal levels. 

[pittman]

My initial numbers were about what yours are now. I have had no complications, and after I got past the first two weeks or so on meds, no decernable side effects. (I am on Atrpla.)

At this point my numbers are back up. (It's been about five years now, but to be honest I would have to actually go look up the exact time since diagnoses, I have forgotten.)

I will be the first to simply point out the irony of worrying/stressing about not worrying/stressing.     Unless your reaction is leading to ignore treatment or other outcomes that are bad for you, just be yourself.

[mecch]

  This may sound incredibly odd, but it was almost a relief to get the diagnosis.  Like it was only a matter of time before it was going to happen.  I had mentally prepared myself for the day - and not in a morbid way.  More so in the sense of the statistical chances.   

You had a better chance to stay negative than to become positive. Unless you were having risky sex all your sexual life.  I don't understand what you are inferring.  Why was it only a matter of time? 

How long since your last HIV - result?

I dunno, I never thought it was a matter of time for me. I came through the 80s and 90s without HIV. I thought I would never get HIV.  I had tests every year. 

But to each his own.  Maybe eventually you will talk about that here - why you felt fatalistic about getting HIV.

[vertigo]

Hello Rem and welcome.

We all have to chart our own, individual path forward with this disease.  Some people really freak out, and some are fairly dispassionate.  Your response is whatever it is.

I'm also somewhat controlled and analytical, but I've found that it HAS been a big deal emotionally, sometimes more than I might have let on.  Not that the sky fell in or anything.  But I feel like it's taken two years to process everything and go back to feeling like myself again.  You're only a month post-dx, so what you're feeling today may change.  It's OK if it does.

It also winds up being a hassle from time to time when disclosure issues come up, whether for work or family or sex or whatever.

As far as assurances for the future, the latest science says to expect normal or near-normal life expectancies.  In other words, the belief is that HIV can be suppressed sufficiently so that something else kills us first.  This is based on studies and modeling and whatnot, as those of us diagnosed since the "good" drugs came out (since 2006 roughly) haven't actually been living with these meds for that long.

Again, welcome.  Thanks for sharing a bit about yourself.  Make sure you start meds ASAP to get your CD4's back up and preserve your immune function.

[Rem]

How long since your last HIV - result?

My last HIV test was one year prior.  I believe I serconverted in January. 

You had a better chance to stay negative than to become positive. Unless you were having risky sex all your sexual life.  I don't understand what you are inferring.  Why was it only a matter of time?

Even before I could explain that I was gay, I knew there was AIDS.  My mother's best friend battled with AIDS in the '80s and eventually passed in the early '90s.  The topic was dinner table conversation.  As a child, it seemed "normal" to me - even though I knew it wasn't.  I am a rational adult with no psychological issues, but I think over time I came to peace with the possibility of one day becoming infected.  Statistically, I had a higher chance of contracting HIV than everyone else I knew because I was gay and had engaged in some unprotected sex over the years.  Which I think all led to the softening of the blow last month. 

I really suspected the possibility in January when I got the flu and couldn't kick it for a few weeks.  I had had unprotected sex a few months earlier.  I don't ever get the flu.  But, I just hoped it was seasonal sickness.  Then I suspected it again when my general practitioner called to make a follow-up appointment after my bloodwork.  But, I just hoped my family's high cholesterol had finally caught up with me.  Despite my hopes, deep down inside I was mentally prepared to hear the words, "You're HIV positive."

This may all sound crazy to some people, but even before I heard those words, I had rationalized a positive diagnosis.   

My initial numbers were about what yours are now. I have had no complications, and after I got past the first two weeks or so on meds, no decernable side effects. (I am on Atrpla.)

At this point my numbers are back up. (It's been about five years now, but to be honest I would have to actually go look up the exact time since diagnoses, I have forgotten.)

This is very comforting to hear, Pittman.  Out of all the news, my CD4 count is what has worried me the most.  As an elementary teacher, I am confronted with germs all day long, everyday.  Knock on wood, no health issues so far.   

Again, welcome.  Thanks for sharing a bit about yourself.  Make sure you start meds ASAP to get your CD4's back up and preserve your immune function.

Thanks, Vertigo.  I wondered how much waiting a month from my previous appointment would affect my already low CD4 count.  I know that when I go to my appointment on the 28th, I will immediately start medication. 

My latest fixation has been researching what medication to take.  The clinical nurse specialist (an amazingly knowledgeable woman) I met with at my initial appointment went over the most common possible combinations, rated them against each other, explained the scenarios in which one combination may be better than another, and mentioned what most people typically take.  After some research of my own, I am thinking about Tivicay and Epzicom/Truvada.  But, I'll have to see what the doctor suggests. 

As I've not discussed my diagnosis with anyone in real life yet, I'd like to thank you all for being my cathartic outlet.  It feels good to talk about everything. 

[bostonprofessor]

Hi Rem

Just a few comments.  I was diagnosed on March 10, numbers were very good (and with other doctors and/or in another time wouldn't even have started meds yet), CD4 576/42%, viral load 111.  Started meds on April 16, and am already undetectable.  Am on Complera.

Like you, I haven't freaked out.  For me it's primarily a health issue, like diabetes or hypertension.  Can't be "cured" but can be managed.  Yes, I could say it's due to lack of good decisions or due to taking too many risks, but so is adult diabetes.  I'm dealing with this as I deal with other medical numbers and conditions.

At the same time, I haven't told anyone.  I am planning to tell my best friend (who happens to be an Episcopal priest) this next week, but am not sure about telling family and other friends.

Like you also, I am a school teacher.  I don't anticipate any changes there--I'm older than you (59) but still have teaching ahead of me.

Anyway, I can't comment on length of time etc., but want to say that others of us who are newly diagnosed share your basic outlook.  Don't feel weird or unusual!  I got the news at a rapid test on March 10, was confirmed at a health center on March 20, saw the primary care doctor on April 1, had blood tests done and saw her again on April 14, and started meds on April 15.  So it was just more than a month for me, too, between the diagnosis and starting meds.

Welcome to the group, and don't hesitate to let me know if I can help you at all.

[Rem]

Thank you, Bostonprofessor. 

Like you, I haven't freaked out.  For me it's primarily a health issue, like diabetes or hypertension.  Can't be "cured" but can be managed.  Yes, I could say it's due to lack of good decisions or due to taking too many risks, but so is adult diabetes.  I'm dealing with this as I deal with other medical numbers and conditions.

This is exactly how I am viewing the diagnosis.  I know it comes with other baggage, but so do many other things in life.  Who knows how I'll feel in six months, a year, or five years.  But, for now, I'm continuing to move along with my life as I was before April 28th. 

I like to have control over what happens in my life, and I think the idea of HIV taking control away from me is what may bother me the most - not the fact that I actually have HIV.  I'm looking forward to starting meds on Wednesday in order to regain that sense of control. 

[Irish Eyes]

Well, I recon you are in the same place I was last December.

Though I had an extremely low risk lifestyle, my doc may as well have been confirming that, yes I do have a scratch on my back, or something else of absolutely no consequence.

I accepted diagnosis immediately, perhaps as I was totally ignorant of the condition and its possible affects on my daily life, no freaking out, no tears, no worry.

Granted there are a lot of doctors visits and blood draws the first few months which disrupt daily schedule but after a few months the number of visits decline.
My meds (stribild) I treat it as a vitamin that I happen to take at midnight with some food.

As for relationships.
As mentioned towards the end of my initial post, I wrote I was certain, the person who I contracted from, he and I would become good friends.
Well, as its taken exactly 5 months and a lot of phone calls and texting and perhaps convincing. As of yesterday it's official. We're dating.

[absopozilutely]

Irish, maybe you're preggo.... Lol!

[Irish Eyes]

not to hijack OP but actually Abso I just maybe. twice!! lol

[Theyer]

I want to comment on this thread but for once I am scared to. I have been thinking about it a lot , I think i just have to say that I think you are lucky to be able to get meds , medical care, able to negotiate all that that entails.

Your clearly not bothered by the newness off the drugs you will be taking , the fact that data is still to be collected on how a life time off taking the drugs affects people.

On a larger Political level theres the cost off the drugs. The recalculating off insurance premiums also.

I am afraid I find all of this alien , though i hope very much your confidence is justified and my disquite is because off the group off people I belong to .

[Rem]

I met with my doctor for the first time yesterday and was prescribed Tivicay and Epzicom.  I plan on taking my first dose tonight at 8:30.  I'm a bit nervous (mostly about possible side effects), but I'm excited that I'm on the right path and taking control of the situation.

I want to comment on this thread but for once I am scared to. I have been thinking about it a lot , I think i just have to say that I think you are lucky to be able to get meds , medical care, able to negotiate all that that entails.

On a larger Political level theres the cost off the drugs. The recalculating off insurance premiums also.

I am very lucky that my insurance covers my medications sans a $60 (Tivicay) and $40 (Epzicom) co-pay.  However, with the ViiV co-pay assistance card, I pay $0 for my medications.  Each January I will have to cough up a $600 deductible, but my school district currently supplies $400 to my Flex Card in September.  So, I only have to pay $200.   I plan on contributing an additional $600 (tax free) to my Flex Card and then have that $600 deducted from my 24 paychecks over the course of the year.  All in all, I am incredibly grateful that I can currently afford this commitment (as long as I have this insurance). 

Your clearly not bothered by the newness off the drugs you will be taking , the fact that data is still to be collected on how a life time off taking the drugs affects people.

It's not that I'm not bothered.  I'm just choosing to not focus on that, as it's an uncontrollable variable.  I have no other options than to take the medication and hope that in 20 years it doesn't cause some other detrimental effect.  I choose to remain blissfully happy that the medication is working and I have the chance to live a relatively normal life.