Scared

[chemistry001]

Hi there

After reading several posts it seems that writing things down seems to be away of dealing with things in this now crazy world to which i have entered. I found out 2 weeks ago that I am positive and with a CD4 count of 9 and a viral load of over 5 million it is no wonder i ended up in hospital with PCP for the last 3 weeks.
Things are just racing past me and I'm finding it hard to keep up, I'm only just getting my head around everything and my feeling are starting to return as Ive felt numb for the last few weeks. Emotions are high and my b'f (who has not been tested yet, but will next week) is finding it harder to deal with than me right now. I'm scared for him and more worried about what the results will be as I know that he is not as emotionally strong as i am, but i hope that together we can and will see this through.

On the 29th August i start on Sustiva/Kivexa, then on the 4th September i start a new job as a teacher in a Secondary school and i don't want to tell the school about my status. It's not that I'm embarrassed or ashamed, i just need to get my head around it first. I've heard the horror stories about side effects but i know that everyone is different so i may be lucky.
I'm worried about taking the meds for the first time and will it cause problems at work, then there is taking time off and how to explain this, if i need to for heath reasons. So many questions and so many worries right now.

At the back of my mind is the issue of friends and family, i feel like every time i speak to them im being untrue, they are asking how I'm doing (still recovering from PCP) and right now i cant tell them the truth. I have a family that love me, i know they would be so supportive so i feel very privileged to have that but how do you tell the people you love that you have HIV? This one is going to take some working out.
I've booked in to see the councillor so hopefully they will help with how I'm feeling and the worries i have.

Until my b'f has been tested I'm in limbo, cant make a decision like talking to people as questions will be asked about him and i cant put him under that stress right now, all i seem to do is try to put it out of my mind, but this is something that is never going to go away.

I do feel better after being able to write something down, think I'll go get a book and start a diary

Paul

[Life]

Paul,

Welcome to the forums...  I know many of us felt the same way as you do right now..  Know this,  you can disclose when your ready..  When things stop reeling about you..  There is no reason to disclose to work at this time..  That will only compound your already high anxiety about being diagnosed...  In time, of which you have alot of...  If you have some KEY close friends, by all means talk to them.  In the meantime, talk to us here.    I know what your feeling about your boyfriend as well.  I was the first to be diagnosed, followed by my husband 1 month later.  It is William who is mentally stronger than me and deals very well with his pos diagnosis.  So, this can work for you as it has me.  Let your boyfriend get the support he needs from you.  No matter what the outcome,  your lives together do not have to change.  I have experienced THAT this past year.  In fact, I would say that HIV has brought us even closer together (if thats fucking possible!!) and we look at every moment we have together as quality loving time together.   I work just as much as I ever did and I do the things I love...  Dont let HIV scare the pants off of you.  Turn around and fight this FUCK and love your boyfriend.   Having him in your life is very important, and communications about hiv/aids is critical.  Keep talking to him and keep writing here and bounce questions off of us... We all have gone through this little bump in the road...  Trick is to stear around the other ones as they come across your path..

Love

Eric

[Alain]

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[Matty the Damned]

Paul,

Welcome to the Forums!

MtD

[jordan]

Bon jour Paul

Sorry to hear about your diagnosis.  I found out in February of this year and immediately started Sustiva and Truvada and did not miss a day of work . 

If your CD4 is only 5 how come the doctor doesn't have you starting immediately?  Mine was 297 and the doctor said I needed to start now.

The best thing you can do is educate yourself, and give it time.  I've said it before, but just remember this is a new chapter in your life and can be fulfilling.

Peace,
Jordan

[Eldon]

Hello Paul, this is Eldon. First, I wanted to welcome you to the forums where you will find a lot of love, encouragement, support, understanding, fun, and answers to many of your questions relating to HIV/AIDS.

I am sorry to hear about your diagnosis with PCP. It is a good thing that you are recovering from it. The BEST thing that you and your BF can do right now is to support each other through this hurdle that has come into your lives. The last thing you need in your life right now is any additional stress.

With your numbers being so low, why is it that the Doctor is waiting to start you on meds at the end of the month? I wanted to congratulate you on starting your new job in the middle of everything that is going on in your life right now. My hat is off to you for staying strong and encouraged to continue to strive for the better.

There are a number of questions that will surface now and feel free to voice them on the forum. This is the time where you need to focus on your health and building a strong support system. Your friends and family are a part of that support system. I understand that you are not ready to tell them the news just yet. Let your conscious be your guide on that one. When you are ready you will tell the ones who are most important to you in your life.

Your family will love you "in spite of" the circumstances. You are their son and they do love you very much. It is also good that you have booked an appointment to see your counselor because the need exists for you to be able to talk things out with him/her. As for your BF, he is in the need of your love and your support right now. Comfort him as much as you can and reassure your partner that things will work itself out for the both of you.

You have come to the right place here to add to your current support system. Your BF and yourself will be in my thoughts and prayers that all will work itself out well for you. Please do stay in touch and keep us posted on your progress.

[Teresa]

Paul,

welcome to the forums. I'm so glad that you found us.
Just remember that we are all here for you.

Take alot of deep breaths...its going to be OK.

Hugs
Teresa

[chemistry001]

Thank you everyone for your words of advise and encouragement, this is the 1st place Ive been able to talk about this and to have you all there is going to keep me sane through the next phase of my life.

Eric- Your right about telling people work, I'm researching out about the legal aspects, in case i do need time off. Knowledge is power or so the say
Alain- Teaching is my passion so i will try and focus all my energy on getting well for the start of the new year in Sept
MtD- I intend to be a regular visitor here on the site, thanks for the welcome
Jordan- The doc said i need to finish the course of antibiotics I'm on for the PCP before starting Sustiva/Kivexa
Eldon- Your words are wise and i thank you for that
Teresa- Ive sat for many an hour and taken in deep breaths, I'm feeling this morning that things are going to be OK, a hug is very much needed so thanks

[randym431]

Welcome aboard!
I usually don’t respond too much cause so many others here are so better at it for advice and guidance, but I hope it all goes well. I just wanted to say sustiva can have some weird side effects, and mostly for only a few weeks. But taking it at night, you should be fine when the morning rolls around, and be fine for the day. Thats how it goes for most with sustiva, which is a very good powerful drug that should get your VL undetectable within just weeks. And your counts will start to get better too pretty fast once the virus is stopped via the meds. Just never never miss taking them daily!!!
I hope you're on some preventive antibiotics till your cd4 gets to or above 200. As a teacher, you'll be around a lot of germs no doubt.

When I told my relatives I was hiv, I was pretty simple about it. I just said,  "I tested that I had that hiv thing, but now a days you can get and take a couple pills that keep it in check, unlike the old days with hiv".

I just made it sound like there it was, I had it and I am going to take the meds that treat it.  I also added that doctors claim one can lead a normal life span, once on the meds. I know that was putting it simply for them and I didn’t get into details about side effects or possible drug resistance. No need to worry them for things that hasn’t happened, and may-probably will not happen.

I'd just keep it simple and let them ask the questions instead of adding lots of unknowns and details. At least that will (should) get you over the hump of telling those you feel need to know or that ask about you.

In the mean time, get on the meds asap and some antibiotics too. My friend is a teacher for little Kids and his best friend for germs is his can of Lysol he sprays things down with in the morning at school. He doesn’t like germs.
Take care...

[chemistry001]

Hi Randy
Your post is very gratefully received, I've heard things about Sustiva, I've got a couple of days to work through the side effects before starting work, bit nervous about it but the kind words people have said make me feel confident.

Your experience about telling family is good to hear, this is going to be the hardest thing for me. My mother lives in NZ and I'm thinking that i should save for a trip out there to explain things to her face to face rather than on the phone.

I'm taking clindamycin at the minute but in a week I'm going back on a low dose of Septrin for 3 weeks, i say low dose as it caused me to kidney failure when i was on a higher dose (12x960g per day), i think I'm on these because of the PCP i had, should the Septrin help keep the nasty kids bugs away or should i ask the doc about something else?

Paul

[wellington]

First and foremost *BIG HUG*. You're among people who really care here.

PCP is not fun. I found myself in ICU a few months after receiving my hiv diagnosis earlier this year and while I lost almost 20% of my body weight, I now weigh more now than ever before in my life and I feel really healthy. Drugs are truly amazing when you use your brain to supplement them

I began Sustiva earlier this year too and the first week was the most interesting. If you take it late in the evening, a few hours after eating, with a glass or two of water - if that won't prompt you to get up in the middle of the night - you will likely be good to go in the morning. I've never been a "morning person" so I naturally feel a bit groggy in the morning and Sustiva, for me, tends from time to time to exacerbate that feeling. It's never been to a point where I couldn't function including drive or be more physically active.

When I lost so much weight so suddenly, I didn't have to disclose my status to my family - they asked me. I was a bit floored, but I was brought up in an environment that dictated when people ask, they want to know. It's been an educative process for all involved, but a productive one. I echo what Eric has already shared that this bug does bring people together - just look at us here and we're almost all strangers - discounting the Montreal gathering that is likely partying their collective butts off.

As a teacher you likely know the power of information. You can never have too much, but the rate at which you accumulate sometimes needs to be moderated. After all, there's alot to know on the path to managing your health and relations. Take comfort in the news that it is entirely possible!

I'm also in a sero-discordant relationship - he's negative. The first couple of weeks after my diagnosis things were ok, then it started to settle in for us both. Some things changed and we needed to talk about those things, as openly as we always discuss everything. We've been together for almost 17 years. Things are starting to get back to a more normal routine and we both love each other which has been a cornerstone in this whole ordeal.

I'll leave the drug questions to those more informed than am I.

Take each day, one at a time, and if you're anything like me, things should improve with each step you take. Be strong and don't be a stranger here!

[since94]

I can't believe I am reading this. I was just released from the hospital
with PCP and 20 t-cells. Same story! I have been wondering whether to try to breathe deep (ouch) or take it easy. Feels like I have one lung.

I am on about 20 pills/day and that is why I don't think my doctor
insisted on my re-starting anti-viral drugs for at least a week. Already what I have
to take, round the clock, tears my tummy to shreads.

But this is what happened differently to me: I started in January on Reyataz, a
horrible drug which caused me to stop eating and pooping. Everything just froze up. I like food, but 20 minutes after eating anything I would be curled up
for 4 hours in cramps. I dropped the meds by the end of the month. I stayed home. I spent days in bed (I was a carpenter before)
I lost 20 pounds and trained myself to hardly eat. (I don't like pain).

My "county" clinic PA (never a doctor of course) did various tests but nothing came of it. Ulcer? Stool sample? Blockage? Kept saying that I really should eat.
Ya think???
He scheduled a colonoscopy for a couple months down the road (thanks!!)
That's when one night I couldn't breathe much and had a fever. Went in the next day and he
listened to my lungs and said it was probably the (los angeles) smog.
Two nights later w/103 fever I went to a hospital. It was PCP, they practically said from across the room,  and I was admitted to a room for 12 days on an iv drip with maybe four antibiotics and a bunch of steroid drugs.

My clinic had missed this. I was so mad. They could have taken a chest x ray
that day (they DO have a machine). Isn't PCP like AIDS 101???

Also, at the end of my hospital stay, I was informed that all these months I had
a case of Giardia (parasite) which you get from rimming (which I don't do) or from unwashed  salads. Or from rimming unwashed salads. Can't remember that part.

 I had asked months ago at my clinic if I had a parasite and they said no, since I didn't have the runs or diarrrea (however the hell you spell it), just solid blockage. We all know there's lots of srtange parasites out there. 

So now I have 20 pounds to gain back, PCP to recover from, a freaked-out
lover who basically shut down over all this, a house to clean, and the search for a new clinic/doctor who I can actually trust. Oh, plus I get to start on Sustiva
soon and I really appreciate the positive comments about it, since I have only heard awful things about it. I have taken every other drug on the charts over the years.

So:
1. Trust your doctor and give him crap if he doesn't listen to you.
2. report your side effects and don't let them tell you that you are being a big baby
3. I would avoid salads for awhile and stick with cooked food if your t-cells are that low. Really-- be careful what you eat for now. Drive-thru MacDonalds salads are great but they are packed by kids making $2 an hour. And the people in the fields have no place to wash their hands when they poop
(and don't think they don't poop). Stay away from tap water if at all possible.
4. Good luck with the germ-carrying school kids (that's what worries me the most about what your situation). Make sure ALL of them in your class have had
TB vaccinations. Tons of kids in L.A. haven't and they'll cough all over you.

I lost 6 months of work, income, everything. All for a parasite which wasn't
detected and I blamed the Reyataz. (it still sucks, but friends swear by it).
Now I blame the county-run HIV clinic.

Good luck! Maybe this means I can go back to work, too.


sincerely,
 steve
since94

[bobik]

Dear Paul,

What a moment to start a new job! I hope everything goes well and my heart goes out to you and your partner. Posting here helps, it helps you to put crazy thoughts into words and understand yourself better, ald also the support here is very warm and genuine and there are some real experts here! Welcome to the forum.

Big hug

Coen (from Holland)