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Main Forums => I Just Tested Poz => Topic started by: HippieLady on May 23, 2010, 10:27:40 am

Title: Introducing myself...
Post by: HippieLady on May 23, 2010, 10:27:40 am
Hello everyone!

I found this forum yesterday and let me tell you....I cried when I did.  I was so happy that I cried!

I found out I was HIV+ on April 30th of this year.  My husband and I had been trying to conceive our 3rd child and were successful after only a month of trying.  I was thrilled!  Routine bloodwork reveals that I was positive.  My new OB told me the news in a tiny room with my two other children (ages 4 and 7) sitting with me.  I was floored by the news, I had so many questions.  The main question of course was how this would affect the baby.  In the end though, the stress of finding out my new status was just too much for the growing embryo and we lost the pregnancy.  Losing the pregnancy was actually a relief as then I felt I only had to worry about my own body and not the tiny lifeforce I was growing.

I had to tell my husband of 11 years that I was HIV+.  I had to have my two beautiful daughters testing...just in case.  Thankfully they all came back negative.  My husband will have to be tested regularly I suppose.  So I'm sure those of you reading might wonder how I contracted HIV.  A little over two years ago, after moving across country to a new city, my husband and I hit a rough patch.  He was drinking a lot and I was trying my hardest to keep it together.  I meet a neighbor friend, she and I started going out regularly.  At the bar one night I met a man who was kind and paid me attention I wasn't getting from my husband.  On one occasion I went to his home...I had every intention of stepping outside my marriage.  Once there I had a change of heart.  I realised that this was not the fulfillment that I was seeking.  Unfortunately for me, the man I was with did not feel the same way and I was brutally raped.  I bled from my rear for a few days and had bruises on my body.  My husband, being the drinker that he was, barely noticed anything was wrong with me.  I didn't tell him at the time what had happened as he was very irrational. 

Thankfully he has quit drinking and extremely supportive.  I have only told a few other people, my dad and stepmom and a close friend.  I have no desire to tell anyone else at this moment.

So far I guess I am handling it well.  I have seen a doctor that I feel very comfortable with and we are going to start meds soon.  I had to have some more blood work to check if my strain is resistant to any of the meds.  My doctor gave me a few choices of meds to look over so she can answer my question and we can decide on which course to take. My T-cell count is 122 and my viral load is 4,520 copies.  I also wanted to say that after the rape, about 3 weeks after, I got very ill with fevers, swollen lymph nodes all over my neck and head and a sore throat.  That started a months long ordeal with different antibiotics, a huge rash all over my body for which I was prescribed steroids.  Then my hair started falling out and all this time not one person suspected HIV.

I never intended to spill this much out on all of you...I guess there was a lot to say.  I look forward to getting you know all of you and learning from your experiences.  I'm sure I left out stuff so if there are any questions about my story or myself in general, please feel free to ask.
Title: Re: Introducing myself...
Post by: Boze on May 23, 2010, 10:59:57 am
Dear katwater,

my heart goes out to you, what a terrible story.

But I also want to welcome you to this community (which I joined recently myself). This here is a very supportive bunch of people and a valuable resource for someone who is newly positive. Without it my own experience of finding out, learning about and accepting the disease would have been much more difficult.
Title: Re: Introducing myself...
Post by: next2u on May 23, 2010, 11:19:00 am
hello there,

wow, that is one hell of a story. sorry you had to go through all of that but i am happy you found us here. i'm sure there will be questions for you later but for now please feel free to ask any questions you have. also, you're off to as good of a start as possible with hiv considering all you have gone through. take care and continue to post.

best,
d
Title: Re: Introducing myself...
Post by: mecch on May 23, 2010, 01:21:52 pm
Glad you found this forum.  And so happy to hear that your family remains HIV- and that you have some support close to you.

"My new OB told me the news in a tiny room with my two other children (ages 4 and 7) sitting with me."  

My mind boggles at such poor bed-side manner and breach of confidentiality!  Absolutely rotten.  Hopefully at some point you can discuss this with this doctor, or never see him/her again.  

"So I'm sure those of you reading might wonder how I contracted HIV."

Its a little point, but eventually you will see on this forum that most of us don't really care how anyone got HIV. We're all in the same boat.
That said, of course the point of the forum is discuss whats on your mind so certainly you'll get a sympatheic ear for whatever topic is weighing on you.

The story of your infection that follows is gruesome. I'm terribly sorry to hear you suffered such violence!

Were you in a situation in which you could have prosecuted the rape?  

It sounds to me like a triple sad story, finally:  1) rape, then 2) not being able to seek justice, and then 3) HIV infection.  Have you seen a therapist to work that out?  If possible, it might be a good idea.  I am so terribly sorry to hear that you had to put up with such unbearable events.  You MUST be strong to have survived and now seeking ways to affirm a good future for yourself.

After your rape, you had a significant seroconversion ilness, when you were ill for a few weeks.  And you say: "all this time not one person suspected HIV."  

Just wondering, was this including yourself - you yourself did not wonder about the possible consequences of the rape?  

Doctors are supposed to respect confidentiality and privacy!  (Unlike your OB!)  If you had told one doctor that you had been raped, there would have been testing for STDs in all likelihood.  Its all water on the bridge, but I also hope that you see that you must start taking care of yourself and your health as much as your children and husband.  Only by being strong (you seem to be) and vocal about your needs, can you be a good mother and wife and live well with the HIV.  You suffered a rape and illness in silence.  Just my humble suggestion that as you continue in your path, you speak up more for yourself and your rights and personal integrity.  
Title: Re: Introducing myself...
Post by: HippieLady on May 23, 2010, 02:19:56 pm
Thanks for the warm welcome.  It truly is a difficult time indeed.

After I got the news, there wasn't time to really feel sorry for myself and it's not really my nature to do so.  I've always told my husband that the kind of people who survive hardships are the ones who can adapt easily to change.  So that's what I did.  The very next day I immersed myself in anything and everything HIV.  The more I learned, the less afraid I was and had an easier time accepting it.  I'm sure at times my husband felt overwhelmed with all the info I was spouting off but he understands that I rationalize outloud and that it was therapeutic for me to talk and talk about it.  We have cried and laughed a lot in the past few weeks and I feel it's brought us closer together.

To answer some your questions mecch....

I did tell my primary care doc about the rape and I had an exam and was tested for STD's.  I was not tested for HIV at that time and honestly I didn't think about it.  My head was reeling from what had happened and I really had no one to turn to.  At the time, as I said, my husband was a drunk.  I did go the therapy for a few sessions but I didn't care for the woman sitting across from me.  I felt judged by her and our sessions only lowered my almost nonexistent self esteem.  I also did not report the rape.  It's funny how our minds can turn something around.  I felt ashamed and I also felt like I should have been smarter to keep myself out of a harmful situation.  I no longer feel that way and wish I would have been stronger at the time. 

I can't have regret and I can't wallow in self pity.  I homeschool my kids and they look to me for everything.  I must be strong and healthy for them.  It takes some time getting used to though.  I had nightmares for the first few weeks, almost every night.  I dreamt I was in a car accident and I was trapped in my car, bleeding from somewhere.  Innocent passersby stopped to help remove me from the car but I wouldn't let them.  I screamed for them to not touch me, to just stay away.  I have intense fear of infecting some innocent person.  I know in time it will get easier and I won't think of myself as defective or rotten (the apple in Snow White comes to mind).

I am eager to start therapy and get this show on the road.  Being proactive about this soothes me and waiting around is hard.  I have done my research on the meds and am mostly comfortable in my Docs 1st choice for therapy.  Of course some of the side effects are scary.

Right now I'm struggling with quitting smoking and trying to get my energy levels up.  I'm so drained these days and it's just not working for me. I hope once I start the meds that my energy will improve.

Title: Re: Introducing myself...
Post by: WillyWump on May 23, 2010, 02:21:41 pm
Welcome KAt!

You have many friends here!

-Will
Title: Re: Introducing myself...
Post by: HippieLady on May 23, 2010, 02:24:34 pm
Thanks Willy! I really means a lot to have found this wonderful group! :)
Title: Re: Introducing myself...
Post by: skeebo1969 on May 23, 2010, 02:28:18 pm
   Thanks for sharing Kat.  I am truly sorry for what has happened to you and the subsequent diagnosis.

   Welcome to the forums.  As Willy said, you have many friends here.
Title: Re: Introducing myself...
Post by: Ann on May 23, 2010, 03:41:52 pm
Hi Kat, welcome to the forums.

Unless you went to your doctor and tested for STIs six weeks or more after your rape, your test result for hiv wouldn't have been very informative anyway. If negative, it only would have told you you were hiv negative before the rape.  However, you should have been told to test at least at six weeks, and then again at three months for a conclusive result.

Many of us who identify as heterosexual (and/or bi, in the case of women) don't think of hiv. It's been drummed into our heads for years now that being straight somehow confers some sort of immunity against hiv. Sad truth is, nothing could be further from the truth. World-wide, the straight community is the one with the most infections. And it's going to keep on growing until the medical professionals get it into their thick skulls that hiv can be and is transmitted when heterosexuals have sex.

It's particularly traumatic for you in that you were anally raped. Unless anal sex is something you're used to, it can be damaging both physically and mentally, as I'm sure you're aware. I've been there, done that, many years ago. I've found in more recent years that it's an acquired taste, but anything, even if it's your favourite chocolate cake or an acquired taste like caviare, can be traumatic if it's forced on you. My heart goes out to you and yes, I have felt your pain.

But on the upside - you seem to be dealing with this in a very positive (no pun....) way. I'm glad to hear that your husband is now seeing the world through his eyes instead of the bottom of a bottle and is being supportive. Long may that continue.

In time you will come to understand that this virus is relatively difficult to transmit and your car accident dream scenario will cease to bother you. Even if you do find yourself in such a situation in real life, unless your rescuer has deep cuts where your blood gets into, you don't have any worries. Hiv simply is NOT that easy to transmit.

In fact, the only thing you need to concern yourself about regarding transmission is to make sure any sexual partner wears condoms for anal or vaginal intercourse. And  that's it. Really, it is. Don't worry about passing it on to your girls during normal, every day contact. It's just not going to happen.

Don't worry so much about quitting smoking right now. You've got plenty of time for that and you don't need any additional stress on your plate. One thing at a time, eh?

Bottom line - you're going to be ok. Bar accidentally stepping in front of a bus, you'll be here to watch your daughters graduate and start their adult lives. You'll be there when they choose a partner and you'll be there to bounce any grandchildren on your knee. The road may be bumpy, but you'll get there.

Ann
Title: Re: Introducing myself...
Post by: mecch on May 23, 2010, 04:58:06 pm
Ok thanks for sharing more.  Im glad to hear that thinks are on the right track now.  In addition to talking here, I hope you find a better therapist - keep shopping til you get the right vibe!  Wishing you all the best!
Title: Re: Introducing myself...
Post by: sam66 on May 24, 2010, 05:13:10 am
Hi Kat
        So sad to read your story, seems like you are staying strong.

        All the best to you and your family.

      sam
Title: Re: Introducing myself...
Post by: HippieLady on May 24, 2010, 12:27:31 pm
I need to make a correction that my CD4 counts was 222 not 122.  I have no idea what my percentage is for that.  My next appointment is mid June to find the results of all the blood they took from me and start medicine.

Truvada/Reyataz/Norvir is my docs first choice with Combivir/Kaletra being the second choice.  I have done my research and I am ok with the first choice but I would like any feedback.
Title: Re: Introducing myself...
Post by: Miss Philicia on May 24, 2010, 12:40:08 pm

Truvada/Reyataz/Norvir is my docs first choice with Combivir/Kaletra being the second choice.  I have done my research and I am ok with the first choice but I would like any feedback.

Yeah, that's a fine starter combo.  The second one I'd probably shy away from slightly but I'd cross that bridge when I came to it.
Title: Re: Introducing myself...
Post by: HippieLady on May 24, 2010, 12:46:44 pm
I think she is leaning towards these because she is worried I'll get pregnant since I'm not on hormone birth control nor do I have my tubes tied.  I tried to assure her that if my husband and I knew of my status prior to getting pregnant we would not have tried at all and now that we do know it's not in the cards at all.  I am already blessed with three wonderful children...no need to rock that boat.

I do know the second choice of meds is more geared towards pregnant women or women trying to get pregnant.  So in my mind it seems less aggressive than the first to make it safer for pregnancy.  Please correct me if I am assuming incorrectly. :)
Title: Re: Introducing myself...
Post by: Inchlingblue on May 24, 2010, 05:17:46 pm

Truvada/Reyataz/Norvir is my docs first choice with Combivir/Kaletra being the second choice.  I have done my research and I am ok with the first choice but I would like any feedback.

The first choice makes sense, it's one of the preferred options for starting (see below). I guess the second choice makes sense if you were to possibly get pregnant but Combivir/Kaletra shouldn't be a preferred choice unless you were actually pregnant, there are all sorts of side effects with this combo and it just seems unnecessary unless, as mentioned, you were pregnant.

Does your doctor have lots of experience treating HIV? Did they run tests to see if you have any resistance issues that would impact your choice of meds?

Dr. Gallant gives his opinion on the pros and cons of each of the preferred combos for starting therapy, LINK:

http://www.hopkins-aids.edu/q_a/patient/recent_questions/lost_on_choosing_medication.html?contentInstanceId=513447&siteId=7151
Title: Re: Introducing myself...
Post by: HippieLady on May 24, 2010, 08:33:24 pm
Inchingblue, I do trust my doctor and she is an HIV specialist.  They did draw a ton more blood at my last appointment, she said they were going to test for resistance and also stuff like my liver function and I'm not sure what else.
Title: Re: Introducing myself...
Post by: john33 on May 24, 2010, 08:41:53 pm
Hi Kat,
I'm sorry to hear about your diagnosis, but welcome to the forums.

You seem to have a good attitude and this will help.

to quote another member, all the best to you and your family

John
Title: Re: Introducing myself...
Post by: HippieLady on May 24, 2010, 09:03:00 pm
Everyone has been so kind... I honestly would be worse off had I not found this forum.  I normally have a fairly positive outlook on life but I don't think there's any amount of positivity to prepare anyone for this.  Ya just gotta roll with the punches  ;)

I told my mom today.  I think that was the hardest part, telling her.  I have no doubts that my family will always be there for me...I've been blessed with an awesome family.  But I was afraid of hurting her and the fact that we live far from each other, I knew that would make it harder.  I feel better knowing that she knows and now we can just move forward.

I look forward to getting to know ya'll better and sharing my journey through this with ya'll.   ;D
Title: Re: Introducing myself...
Post by: mecch on May 25, 2010, 09:03:28 am
Hey new pseudo. Groovy
Title: Re: Introducing myself...
Post by: Billy B on May 25, 2010, 11:06:05 am
Hello Kat,  Welcome to the forum although I hate that anyone has to be here.
I am envious of the fact that you have two children and a supportive loving family.
I am new to meds but have been positive for many years. My numbers remained stable and I was just waiting until something better and less toxic come along before I started treatment. Many of my older friends were on the first treatments and they weren't too kind to the body. The newer ones are fairly well tolerated and as you see there are several different combo in case one of them doesn't agree with you. Mt ID specialist's first choice did not agree with me but the next one was perfect and I am still working 40 hours a week and doing anything I want. I know that working full time in no way compairs to raising children, but be strong and don't be afraid to question your doctor.
Peace and Love,
Billy
Title: Re: Introducing myself...
Post by: Matty the Damned on May 25, 2010, 06:05:53 pm
Welcome Hippie!

MtD
Title: Re: Introducing myself...
Post by: HippieLady on May 26, 2010, 10:16:28 am
For lack of a better place to post my grievances...I'll keep adding them here, at least until I feel that I outposted my "newbie" status.  I don't know what I'm talking about...it's early here and my coffee is not working for me.

Yesterday was rough!  I was so damn tired, which is everyday but it seemed worse yesterday.  When I'm tired I tend to read into things way too much.  So I had a random pain in my chest, most likely muscular and caused by stress.  But I was slightly freaking out about it, wondering if it was something more serious caused by my new viral friend.  I have to remind myself that I went undiagnosed for 2 years...two winters, two flu seasons and one Hiney-flu season and I made it through those unscathed.  There is something to be said about blissful ignorance.  Don't think for a second that I wish I never found out.  That is far from the truth.  But I'm a worrier by nature....an optimistic worrier, is there such a creature?  So anyway, now that I know about the war being raged in my body I have been more focused on random pains.  And this fatigue crap is for the birds!  Someone please tell me that will get better.

It hasn't been a month yet since I found out about my hivies.  Some of the changes I noticed even before I found out....like I lost weight over the past two years.  I've always been a thinner type of build, thanks heredity, but I noticed my face losing weight and my skin is horrible.  I used to have such lovely skin until my seroconversion and now it's just crap.  No matter what I do I can't seem to clear it up. 

My mom started going grey around my current age, maybe a bit younger than myself.  I was starting to think I was lucky as I had only seen one or two and promptly yanked them out.  However in the past week or two I have noticed more greys...actually they are silver.  Am I upset?  No, but I was hoping that I had more years before I started looking older.  Until recently I still got carded for ciggys and I am 34 years old.  I guess I'm not ready to look like a grownup even though I've been playing the part for years.

Alrighty...I'm sorry for writing a book.  I need to work on wrapping it up better.  ;D

-Hippie
Title: Re: Introducing myself...
Post by: Ann on May 26, 2010, 11:21:35 am
Hi Kat,

Were you experiencing fatigue before diagnosis? If not, it's likely down to the stress you're experiencing. Stress can really do a number on the body. Fatigue can also be caused by depression - situational depression included. It's not uncommon to experience situational depression in the early days of diagnosis. I know I did.

Exercise can often help fatigue, especially when it's caused by stress and/or depression. Sometimes just getting out for a walk on a nice day can lift your mood and boost your energy.

You say you homeschool your girls, how about having daily "field trips" out to your local woods or other beauty spot and have wildflower walks, or tree walks, or wildlife walks, where you look for and identify what species you have in your area. When you have kids, you can make your exercise fun.

And the good news is yes, it does get better.

Hang in there!

Ann
Title: Re: Introducing myself...
Post by: Inchlingblue on May 26, 2010, 01:04:10 pm
I completely understand where Ann is coming from when she says that quitting smoking now might be too stressful given the recent diagnosis.

On the other hand, sometimes it takes a big event such as an HIV diagnosis to act as a catalyst for achieving something as challenging as quitting smoking.

Whether you quit now or soon, please don't ignore it. If you check out the link below you'll see the many added dangers when having HIV is combined with smoking.

LINK:

http://www.thebodypro.com/index/treat/smoking.html
Title: Re: Introducing myself...
Post by: HippieLady on May 30, 2010, 09:58:40 am
I replied to a thread in the LTS section wishing someone well on an illness, only to get a little handslap for doing so.  I re-read the forum guidelines and I must be missing something.  Not knowing the proper place to ask this question, I figured my own thread would be the safest place.

Where am I not allowed to post in the forums?  I don't relish the thought of a TO, so I would like to keep my nose clean.

Title: Re: Introducing myself...
Post by: HippieLady on May 30, 2010, 10:14:11 am
Ok nevermind.....I got it now.

Thanks for the heads-up Ann  :)
Title: Re: Introducing myself...
Post by: Ann on May 30, 2010, 10:19:51 am
You're welcome, Kat. Don't worry, I'm sure we all understand that people new to the forums might not know their way around all that well at first.

No harm done. :)
Title: Re: Introducing myself...
Post by: HippieLady on June 03, 2010, 04:02:38 pm
Hi everyone!

I just got home from my doctors appt and I have all my prescriptions....4 of them.  Bactrim, reyataz, truvida and norvair....my cd counts drops a bit below 200 which is why the bactrim.  Now I just need to get them and start taking them.  The nurse is gonna call me in 2 weeks and ask me about side effects.

My labs did show resistance to drugs in the NNRTI category.  But they weren't something my doc was considering anyway.  A little disappointing but doable.  So that's what new here...I'm a little nervous about the meds but I had pill phobias before all this.
Title: Re: Introducing myself...
Post by: Matty the Damned on June 03, 2010, 04:34:17 pm
Hi everyone!

I just got home from my doctors appt and I have all my prescriptions....4 of them.  Bactrim, reyataz, truvida and norvair....my cd counts drops a bit below 200 which is why the bactrim.  Now I just need to get them and start taking them.  The nurse is gonna call me in 2 weeks and ask me about side effects.

My labs did show resistance to drugs in the NNRTI category.  But they weren't something my doc was considering anyway.  A little disappointing but doable.  So that's what new here...I'm a little nervous about the meds but I had pill phobias before all this.

By and large it's a nice gentle combo, I don't imagine you'll experience any major problems with it. The Reyetaz might make your eyes and skin go a bit yellow for the first couple of weeks but that will pass and isn't dangerous.

Be careful about sun exposure when you're taking Bactrim. It increases your sensitivity to sunlight and you can easily end up with a terrible burn.

MtD
Title: Re: Introducing myself...
Post by: Hellraiser on June 03, 2010, 05:26:00 pm
Hmm, if you are under a cd4 of 200 then I was under the impression you should also have been given a prescription for azithromycin as prophylaxis in addition to the bactrim.
Title: Re: Introducing myself...
Post by: anniebc on June 03, 2010, 05:33:49 pm
Hey Kat
First of all a winter welcome to the forums from NZ, I'm a bit late but I've been a little busy lately.

I'm resistant to the Non nukes also but I've had no trouble with that at all, so I hope you are not worried about it.

As Matty said the the Reyataz will cause a little yellowing of the eye and skin,I turned a lovely shade of mustard when I first started but it only lasted a couple of weeks.

I'm on the same combo as you, I've had a few side effects in the past, and nothing that I couldn't handle but certainly nothing to worry about of late, I'm sure you will be fine.

I'm sure you know this already but just to remind you that once you start taking the meds you have to adhere to them 100%,...just saying.. :)

Take care
Hugs
Jan
Title: Re: Introducing myself...
Post by: edfu on June 04, 2010, 05:13:45 am
Hmm, if you are under a cd4 of 200 then I was under the impression you should also have been given a prescription for azithromycin as prophylaxis in addition to the bactrim.

For what?  The only time I'm aware of in which azithromycin would be used as an OI prophylaxis is when the CD4 is consistently below 50, and then it's used to prevent MAC. 
Title: Re: Introducing myself...
Post by: Hellraiser on June 04, 2010, 10:56:33 am
For what?  The only time I'm aware of in which azithromycin would be used as an OI prophylaxis is when the CD4 is consistently below 50, and then it's used to prevent MAC. 

Ok...maybe my doctor didn't bother to tell me to stop taking it then.

PS: it may have been given to me to combat Staph A?  I'm really unsure why it was originally prescribed anymore.
Title: Re: Introducing myself...
Post by: HippieLady on June 04, 2010, 11:30:44 am
I started the Bactrim last night.  One of the three hiv meds was not available when I got my meds last night...it should be ready today before noon.  I'll take my first dose of the hiv meds tonight with my dinner.  I'm going to try taking them in the evening at first, since we usually eat at the same time every day.

I have been very calm, cool and collected about this whole business so far.  It's the meds that are giving me the most anxiety.  I know the benefits outweigh the risks...I am logical.  But my mind doesn't want to follow the rational train of though, instead it jumps track and goes willy-nilly into the land of what-ifs and fear.  For example...I talked to my bactrim pill last night before I took it.  It sounds crazy, I know...but it helped for me to reduce the anxiety.  And I'll probably give my other meds a pep talk before they go down the hatch too.  I wish I wasn't such a puss when it came to taking pills, but I don't trust them.  That's what it all comes down too....I don't trust most medications to do more good than harm. 

I'm getting over it though...slowly facing my fears.  Needles and pills.  Two things I will have to face for the rest of my life.  Believe it or not, those two scare me more than having hiv.   :-\

I also wanted to thank everyone that responded to my mom's thread in the "someone I care about has hiv" section.  She is an amazingly wonderful person, who is full of love an support.  I know this is all hard for her to swallow.  She lives on the east coast and I live in the desert SW, I know the distance is hard for her.  She lost a grandson a little over a year ago to leukemia, he was only 4 years old when he lost his battle.  I know that was very hard for her and I'm sure many fear resurfaced when I gave her my news.  We are learning about this together, as a family.  I comforts me to know that we can share this place and receive the same awesome support.  :)
Title: Re: Introducing myself...
Post by: ballerina on June 05, 2010, 12:31:57 pm
I find it awesome that you talk to your pills, and I totally get how it can make things easier. Never underestimate the power of interacting with 'inanimate' objects!