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Author Topic: Newly diagnosed, need to try and get the feelings out  (Read 2659 times)

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Offline JMMich

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  • Posts: 18
Newly diagnosed, need to try and get the feelings out
« on: June 15, 2013, 10:17:17 PM »
Hello everyone,

I've been browsing the forums for the last couple of weeks, ever since I first got "the news." I finally decided to make an account and post. The main "read me" thread said I can just vent, so for now I think that's really what I need to do if that's okay.

A bit about me. I'm a 30 year old guy, live in the metro Detroit area, decent job, single, and live on my own with a recently adopted and mischievous cat.

The last couple of weeks since I got the preliminary test results (which were confirmed a few days ago) have been a roller coaster. I think the few friends of mine who know are more worried about me because I've (publicly) been taking it in stride. They keep asking me how I feel. Honestly, I don't know how I feel. Is there really an "appropriate" way to feel when you learn you have HIV? Maybe I'm still in shock? On the inside, I just go from one emotion to the next. I think in the last two days I've had that pit-in-your-stomach feeling like a half a dozen times, only to do a 180 in less than an hour and think, "No, I won't let it beat me."

Reading the forums, and talking to a friend of a friend who is positive, has given me a lot of hope that things are going to be just fine. It will just take time to deal with emotionally and physically. And there will just be pills and routine blood draws in my future. (I guess I'm going to have learn to deal with that fear of needles soon-ish...)

I have my first doctor's appointment on Tuesday. I am kind of worried that that will be when it really sets in. There will be more tests, etc., and I'll finally have "the numbers." I honestly don't know what to expect. I haven't even been to a doctor in years; it does seem kind of ironic that now, when I've been diagnosed, I've otherwise been the healthiest I've been probably since I was a little kid. Bah...

So...yeah. I just kind of wanted to introduce myself and get my thoughts out there. I'm sure as we go I'll be back with questions. In the mean time, any general advice would also be greatly appreciated; this has been a pretty damned steep learning curve. Thanks!

-JM

Offline Jeff G

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Re: Newly diagnosed, need to try and get the feelings out
« Reply #1 on: June 15, 2013, 10:34:06 PM »
Welcome to forums JM . Its a cliché but its a true one , it gets better with time .

We have a great group of people here that are very friendly and sometimes confrontational / tough love when we need a kick in the pants , and we all need one now and then . I'm looking forward to hearing more from you so stick around .

Offline SweetSassafras

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  • Posts: 15
  • Tangerine! Don't touch that!
Re: Newly diagnosed, need to try and get the feelings out
« Reply #2 on: June 16, 2013, 09:06:28 AM »
Welcome JMMich.  Sorry you're here but glad you came. You'll find it very helpful, I think. I know I have and I've only been here a week or so. It's nice to have someone who knows this road hold your hand as you go down it.


Offline JMMich

  • Member
  • Posts: 18
Re: Newly diagnosed, need to try and get the feelings out
« Reply #3 on: June 16, 2013, 10:49:28 AM »
Thanks Jeff. And you as well, SweetSassafras (all hail the Hypno-toad!). I've already learned quite a bit just from reading the posts and responses from others, and I'm sure there will be a lot more from me as time goes by. I definitely plan on sticking around. I'm just glad to have found these forums so quickly. Thank you again for the welcome.

Offline oksikoko

  • Member
  • Posts: 680
  • Writing the congressman again
Re: Newly diagnosed, need to try and get the feelings out
« Reply #4 on: June 16, 2013, 11:42:01 AM »
Is there really an "appropriate" way to feel when you learn you have HIV? Maybe I'm still in shock? On the inside, I just go from one emotion to the next. I think in the last two days I've had that pit-in-your-stomach feeling like a half a dozen times, only to do a 180 in less than an hour and think, "No, I won't let it beat me."

Reading the forums, and talking to a friend of a friend who is positive, has given me a lot of hope that things are going to be just fine. It will just take time to deal with emotionally and physically. And there will just be pills and routine blood draws in my future. (I guess I'm going to have learn to deal with that fear of needles soon-ish...)

I have my first doctor's appointment on Tuesday. I am kind of worried that that will be when it really sets in. There will be more tests, etc., and I'll finally have "the numbers." I honestly don't know what to expect. I haven't even been to a doctor in years; it does seem kind of ironic that now, when I've been diagnosed, I've otherwise been the healthiest I've been probably since I was a little kid. Bah...

Howdy. Sorry for the chop job, but I cut up your post in the quote to respond to those particular questions. I'm not sure if it's helpful, but there are some things I might have liked to have known or been reminded of at the beginning:

There's definitely no 'appropriate' way to feel, but sometimes you might feel like you're not giving the reaction somebody else expects — at least I do. Just ignore it and feel what you feel. I'm in month 7, and I've gone from "this was perversely the best thing that ever happened to me" to "well, life was fun — too bad it's over" and back 5 or 9 times.

If your life was on track before, then, yeah, things will probably be just fine. If it wasn't, it still won't be unless you let this be a catalyst to turn things around. Basically, when all is said and done, it doesn't affect the course of your life as much as you might expect it will unless you let it. That's not always a bad thing, since some changes are for the better. Unless you have some particularly unusual health situation, there's a kind of banality that sets in once you get medicated and get your numbers in a decent place. It just becomes a thing, like any other thing.

Spending so much time with a doctor is definitely weird at first, but you get used to it pretty quickly. I'm not seeing mine until September, and now that seems like a looooong time away. Before this, I had gone about a decade without seeing a doctor at all, so that's definitely a change in attitude. I don't mind the needles (ha), but the sheer volume of blood they take was a little intimidating at first. Now I just look away as they drain my vital essence. I find getting the numbers to be a positive thing, since I feel more in control when I know where they are. Some people don't like to get numbers and ask the doctor to only tell them if something "bad" happens. Have whatever relationship you want to have with all the digits as long as the doctor or someone is keeping an eye on them for you.

My health has improved across several metrics since diagnosis, so I wouldn't be surprised if you experience something similar. Since you'll likely be paying more attention to your health than you used to, you might end up making certain changes that you may not have made otherwise.

If they put you on antiretrovirals right away (which seems more and more like a good idea as soon as possible after diagnosis, [though your doctor knows best]), don't necessarily expect to have crazy side effects just because of what you read or hear. Remember that only people with problems report or ask on forums (usually). For every person who has, for example, digestive troubles, there are several who don't.

Be aware of a syndrome called "AIDS Goggles" and take any new symptoms with a grain of salt. Some of us have a tendency to think every health problem we have is because of HIV, but sometimes (usually) a headache is just a headache.

With that said, since you seem like you (like me) were not a doctor-goer before this, don't be afraid to let your doctor know if you think you're having adverse side effects or if you notice something weird with your health. If they dismiss it, don't be afraid to ask someone else. It's important that you feel comfortable with your doctor, that you feel like it's a team effort.

As with outing in the 90s, your sero-status is nobody's business but yours and your doctor's (and I would argue it's the business of anyone you're sleeping with, though some disagree). You might feel pressure to "come out" but really you have to do what's comfortable. I'm obnoxiously open about it, but that's because I have the freedom to be. I'd recommend thinking about this beforehand so that it's never a surprise, so that you know whether you want someone to know long before it becomes an issue. I find that being open about it is just easier, the same way that being out of the closet is just easier (and less stressful), but your mileage may vary.

That's all I can think of at the moment. Good luck!
« Last Edit: June 16, 2013, 11:44:35 AM by oksikoko »
Code: [Select]
2013-10-03:                ☣ VL (?) off treatment ☣ CD4 (?) off treatment
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

If no one complains, nothing will ever change.

Offline Jmarksto

  • Member
  • Posts: 512
Re: Newly diagnosed, need to try and get the feelings out
« Reply #5 on: June 16, 2013, 03:14:38 PM »
Hey JMMich;

Welcome to the forums, it sounds like you are getting good support and you have a good handle on this.  I am one year in this month, and I went through a big roller coaster of emotions - and am still adjusting to my new normal - but things really have gotten much, much, better with time.

This is a great place for information, support, and ...well, even if you need advice on your newly adopted mischievous cat.  See the pet threads in the Off Topic forum if you haven't already.

Again, welcome.
Best,
JM



03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD

Offline JMMich

  • Member
  • Posts: 18
Re: Newly diagnosed, need to try and get the feelings out
« Reply #6 on: June 21, 2013, 06:43:42 PM »
Thanks oksikoko and Jmarksto, for the kind words and advice. Much appreciated!

Doctor called today with my first numbers. CD4 is 800, VL is 16,000. Doc said that these are good numbers and it gives us time to talk about treatment options. A friend of mine who is poz (and who has been a great support source) said the same. Just knowing something a bit more definite is something of a weight off my shoulders. I go back in just under 2 weeks once the doc gets the complete lab set back (he said the one that takes the longest is the geno-typing), so we'll see how that goes. In the mean time, I'm sure I've got a lot more research to do!

Offline Jmarksto

  • Member
  • Posts: 512
Re: Newly diagnosed, need to try and get the feelings out
« Reply #7 on: June 22, 2013, 01:16:02 AM »
You do have some good numbers, you have good medical advice and you have someone "that has walked in these shoes" to talk to -- those are three very good things.  I hope that all helps give you some piece of mind.

Take care,

JM
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD

Offline ohwell

  • Member
  • Posts: 42
Re: Newly diagnosed, need to try and get the feelings out
« Reply #8 on: June 25, 2013, 01:22:39 AM »
i got to know i was poz on march 7th,  the movies from the movies had created certain preconcieved scene in my mind a clinic, a nurse and a psychologist giving you the news. Not my case, i was alone in my room checking my results online. Anyway you go by the motion and keep moving those first days kind numb, you'll get a rainbow of felling in the next weeks but it gets better. i think, i hope.
they made me do it

Offline Pontus

  • Member
  • Posts: 32
Re: Newly diagnosed, need to try and get the feelings out
« Reply #9 on: June 29, 2013, 09:43:43 PM »
Sorry to hear of the diagnosis.. but happy you made it here.  I am fairly new to all of this too.  I was diagnosed mid-may, got my numbers a week later with a VL of 500k+ and CD4 of 384.  I started Stribild right away (one month now). 

I wanted to let you know that like you I was somewhat numb for the first couple of weeks.  However, the more i talked to my doctor the more my questions were answered and slowly my fears started fading as I continued on with my life.  Now I can think about being HIV+, but it does not emotionally hurt as it did in the beginning.

Although I am fairly new to the forums and being HIV+, I have to say that your initial numbers are impressive.  I have confidence with the right medication (which the gnome test will help determine) and stubborn persistence of staying on your meds will have you undetectable soon.

You know, my last visit to the doc he said something to me that really put it in perspective for me in terms of my concerns of expected life span...  He said "you should go out and buy yourself a new house or buy you a sports car, cause you are going to be here for a long time to see them paid off."  In other words, having a long and productive life is more than possible.. in fact it is highly probable (unless you have an unfortunate encounter with a Mack truck).

Finally, be positive,, be well.. eat right, exercise, take your meds and plan into the future!  We live in a wonder age of highly sophisticated medicine and treatment..
05-17-13 - Diagnosed/ Westerblot
06-03-13 - VL=500,193 / CD4 384
06-03-13 - Gnome - no resistance
06-05-13 - Start Stribild
07-23-13 - VL = 100 / CD4 664
10-14-13 - VL = 40 / CD4 592
01-03-14 - VL = UD /CD4 784

 


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