Quantcast

Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
December 21, 2014, 07:32:52 AM

Login with username, password and session length


Members
Stats
  • Total Posts: 650048
  • Total Topics: 49619
  • Online Today: 177
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 2
Guests: 117
Total: 119

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: brand new - just joined today  (Read 4363 times)

0 Members and 1 Guest are viewing this topic.

Offline minismom

  • Member
  • Posts: 2,608
  • Quocumque jeceris stabit
brand new - just joined today
« on: November 10, 2007, 02:48:21 PM »
Not sure exactly where I should be posting, so kind of testing the waters.  If you read my post in another forum, you can skip this one. It'll say pretty much the same stuff.  I'm the mom of a 7yr old dd (guess she qualifies as a "woman"...lol) who was born HIV+.  She had a really rough time for the first 21 months of her life.  Her VL was so high that the test would just show the max number it could count followed by a +.  In Jan. 2002, she had a genotyping done and has been undetectable since June 2002.  She's now dealing w/ secondary effects of HIV on her developing brain and the neurotoxic meds she's been on since birth.  She's been dx w/ CP, diabetes, her liver is wacky, her triclycerides are through the roof (284 as of last Tuesday), she's also dyslexic, apraxic, and has multiple learning disabilities.  She was just tested for sickle cell, rheumatoid arthritis, and has a MRI Jan 2nd, 2008, to check for inflammatory demylenization neuropathy.


She knows she is HIV+, but finds it hard to understand why she can't just tell it to everyone she meets.  She's a real sweetheart.  We're worried about her future, though.  I'd like her to be married if she wants, and have kids if she wants.  I'm just scarred that no one will be able to get past her virus.  I'm also scarred that as she gets older that she'll go down some self-destructive path because she loses hope.  Any suggestions?  Has anyone else been in this predicament?  Honestly, right now her disabilities associated w/ her HIV are harder to deal with than the fact she's HIV+.  Am I overthinking things, or just plain crazy? ???

I"m glad I"ve found this site.  Looking forward to getting to know positive women who can help me stay positive about my positive little woman.

mini's mom
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Dragonette

  • Member
  • Posts: 1,190
  • Spring symptoms
    • NotPerfectAtAll
Re: brand new - just joined today
« Reply #1 on: November 10, 2007, 05:04:20 PM »
Hi Mini's Mom

I didn't see that you posted here too so I welcomed you on the Living with. I do have some idea which drugs cause the troubles (some of) but there are more informed members than me and you have already gotten some good answers. Anyway about what you wrote here, no one can obviously say... but there are kids born with HIV who are having normal lives, dating, finding partners... I want to attach a link to part of a documentary from the BBC in which there were also included interviews with 2 young women born poz.

http://www.youtube.com/watch?v=GwIj65hBoRw  - the interview with the girl start at 01:45 minutes if you want to scroll to it or just watch the first 2 minutes till it starts.

This 2nd interview starts afte 01:08 minutes or again just watch from the start - the link: http://www.youtube.com/watch?v=VGmAfoUbFKU

There are more example of kids born with HIV or getting it at a young age who are in relationships, for example Shaun whos write a blog on the Poz website which is linked to from the forums' homepage. i don't think he writes much about it there but he has a book about it, which I haven't read. Anyway he seems to be leading a fulfilling life with his wife.

I know that it is impossible to generalize from others to ourselves but I thought it would be nice for you to see how these 2 young women are doing from the "feminine" aspect.

I don't think you're crazy at all, I think you are a wonderful mom.

All the best to both of you,

"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,093
Re: brand new - just joined today
« Reply #2 on: November 11, 2007, 08:54:48 AM »
Hi MM:

Welcome to the forums.  I haven't read your thread in the "Living With" section.  This is the first place I check in when I come on the forums. 

I don't know what apraxia means, if you could please explain a little.  Wow!  What a challenge for both you and your daughter.  I would suggest counseling.  There's nothing quite like a good therapist.  You might have her in it already.  I realize sometimes it's hard for a little one to go to therapy, but I think it would be a good start.

One thing I always try not to do is project about the future.  I know it's easy to do, especially where kids are concerned.  I have a daughter, but she's 23 and HIV-.  Maybe you could benefit from some therapy yourself.  I'm not saying that to down you, by any means.  I've been in regular therapy since 1991 with the same therapist.  So he knows me pretty well.  But, as far as the "what if..." thing goes, please try not to do that.  She could well grow up to lead a normal life and do normal things.  And know that anything that comes up, you'll be able to handle at that moment.  When I just take a day at a time, or a couple days at a time, I can handle it.  It's when I start worrying about the future, that life becomes unmanageable.  It seems like you have a good head on your shoulders, and that you're doing all you can for your daughter.  I can't imagine what it's like.  One of my sister takes care of special needs children in her home and has a son who has CP, is blind and severely retarded (well, a stepson).  I know it takes a lot of patience and courage (and love). 

Know that we are all here for you, whatever your situation is or whatever comes up.  There are a good bunch of people here on these forums.  Very supportive and loving.  And some are quite knowledgeable.  So please continue to check in here. 

That being said, welcome!  I look forward to hearing more from you.
Peace-
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline minismom

  • Member
  • Posts: 2,608
  • Quocumque jeceris stabit
Re: brand new - just joined today
« Reply #3 on: November 11, 2007, 02:12:01 PM »
Thank you for your encouragement, Betty.  Apraxia is a close cousin of dyslexia.  It has to do with the way the brain does, or doesn't, interpret information.  A neurologist said it's like hearing people speak french.  You know they are speaking French, but have no idea what they are saying.  So the brain knows that it's supposed to be doing something - just not always what it's supposed to be doing.  It effects motor planning, memory, and every other cognitive function.  Hope that helps.  I'm sure I've made it clear as mud :-\

Mini is actually doing well.  She just says the doctors are whacked.  Her biggest issue is having to be on a diabetic diet.  It didn't bother her when she was dx w/ diabetes (age 4), but now at 7 it's starting to get to her.  We just talk to her about it and give her one of her alternatives.  Most of the time she tends to to better than mommy (and daddy).

Mini's mom
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,093
Re: brand new - just joined today
« Reply #4 on: November 11, 2007, 04:25:16 PM »
Well, I can sympathize with her having to eat a diabetic diet-I'm diabetic myself.  I was dianosed with it like seven or eight years ago.  What happened was, I was in a coma and the feeding that they were giving me had a high sugar content in it and it caused my pancreas to shut down.  So, I've been diabetic ever since.  But only recently have I been starting to take care of it.  So I've got a ways to go.

I meant what I said, we're here for you.  I hope our support helps.  It sure helps me.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline seekay70

  • Member
  • Posts: 40
Re: brand new - just joined today
« Reply #5 on: November 12, 2007, 10:09:43 PM »
Mimismom

I have to give you kudos, I know you are going through your own personal hell dealing with what your daughter has to go through and as a mom you just want to make it all better.  I am a mom myself, and as far as I know All of mine are negative,I was diagnosed when my 4 year old was 2, so I still worry every day.  You mentioned that you are concerned that your daughter will chose a self destructive path later in life, well as a child I grew up in foster care...(long story) I got HIV from my second husband and am currently going through a divorce from him due to abuse and his drug use.  (to the point Sherry .....sheesh) anyway I guess want I am trying to say, I have always lived my life...ups and downs remembering this one thing.......If it were not for everything that I have been through I would not be the person that I am today.  I think I am a pretty strong person, and I attribute it to everything I have been through.  Just always tell your daughter that no matter what she is a special person, and she is strong.  She became strong by jumping all of these hurdles she has jumped so far in her young life, and as long s she keeps jumping she will grow up t be one of the strongest women you know!...Well  i didnt mean it quite like that but you get the jest of it.



Sherry

Offline minismom

  • Member
  • Posts: 2,608
  • Quocumque jeceris stabit
Re: brand new - just joined today
« Reply #6 on: November 13, 2007, 09:30:23 PM »
Thank you for your very kind words.  She's a strong little girl.  7 is an awkward age, though.  Meds, drs, therapists, blood work, they've been a reality in her life since she was born.  She's starting to notice that not EVERY 7yr old has meds, drs, therapists, and blood work.  She's starting to complain some about her meds - kaletra and Zerit are liquid and burn like hell going down.  Susteva are pills (100 & 200 mg).  She asks why her sibs get to do things she can't, why she hs to take meds, and why her legs don't work so well.  Most days I'm at a loss for words.

mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Winiroo

  • Member
  • Posts: 2,082
  • Positive since 1991
Re: brand new - just joined today
« Reply #7 on: November 13, 2007, 10:51:34 PM »
Yep! sounds like a 7 year old.
Welcome to the forum Minismom

Wendy

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.