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.
November 28, 2014, 05:18:31 AM

Login with username, password and session length


Members
  • Total Members: 24072
  • Latest: Esfesf
Stats
  • Total Posts: 647681
  • Total Topics: 49359
  • Online Today: 157
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 3
Guests: 109
Total: 112

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: Positive since 2005  (Read 1005 times)

0 Members and 1 Guest are viewing this topic.

Offline martind-28

  • Member
  • Posts: 3
Positive since 2005
« on: May 14, 2012, 05:27:19 PM »
Hi, new to forum.  Glad I'm here.  I was found to be positive in 2005 and started taking meds then.

I can relate.  It seems every week is Drs., test, or some new ache or pain.  I don't know if it is the meds, the virus, or both.  Havoc has been wreaked on my body.
Some docs say it is the virus, some say the meds, and some say both.

I have neuropathy in my feet and hands, I have balance issues because the neuropathy has interrupted the flow of data in my leg nerves from my feet to my brain.  Sometimes the pain is unbearable. Like you, I have to be aware of where my feet are or I fall down.

I have stage 3 kidney disease, which my kidney dr. suspects was brought on by taking Truvada.

I have Gastroparethes  (spelling), or part of my stomach is paralyzed, neuropathy related.

I have lung problems, some of my bronchi have become deformed and hold plegm making me suseptable to lung infections.

I have rashes I get.
 
I puke every day.

I have lost 60 lbs. since November, but holding steady now.  Loss of appetite.

I spend all morning just getting so I can enjoy the afternoon.

My energy is just zapped.

I was on Lexiva and Truvada, am now on atripla .

I had to retire.  I now use a cane.  Some days I just say forget it.

Now to what I have done.  Believe it or not I bought a puppy and he makes me feel better.  I force myself to get out and walk him, usually 3 miles a day.  Some days, I know, I don't know how I will make it home, but I do.  I changed HIV Drs. and she changed my Medicine which helped, but the damage is done.

I am seeing a therapist who specializes in Cancer patients and HIV patients, and the associated pain.  He gets it.

I also found a good legit pain management dr. for help when I just can't help my self.

Yes, if I over do it on THOSE days, I end up down for 3 days.

Find a good up to date dr. that will be honest with you, and maybe consider changing some things, like meds.  Find a good therapist that gets it.  They are hard to find, but don't  stop till you find one.

Get a good compassionate pain dr. to give you something to help you get through THOSE days.

Find a hobby that you can sit and do.  For me it was rediscovering my love of the guitar.

And last, demand that all of your drs. work together or get new ones.

When I go to a dr. I am as much interviewing them as them trying to treat me.  They must be familiar with HIV, the meds, and the problems, or I fire them and try others.

This is my routine and what helps me.  I hope I have been some help.  This is my first post on any forum.


Offline bear60

  • Member
  • Posts: 4,104
Re: Positive since 2005
« Reply #1 on: May 15, 2012, 12:43:17 PM »
Hi
Welcome to the Forums.
You have a lot to say.
I can relate to most of what you say about HIV.
The only thing I have take exception to is what you say about Doctors.  I know there are good ones and bad ones......but they cannot learn about you without listening to you. If you feel as though you are interviewing them maybe it says more about you than about them.  I would never fire a doctor unless there was real cause and I dont think that you have shown good reason to fire a doctor.
Just mu opinion.


Joel
Poz Bear Type in Philadelphia

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: Positive since 2005
« Reply #2 on: May 15, 2012, 05:06:22 PM »
Hi
Welcome to the Forums.
You have a lot to say.
I can relate to most of what you say about HIV.
The only thing I have take exception to is what you say about Doctors.  I know there are good ones and bad ones......but they cannot learn about you without listening to you. If you feel as though you are interviewing them maybe it says more about you than about them.  I would never fire a doctor unless there was real cause and I dont think that you have shown good reason to fire a doctor.
Just mu opinion.


Joel

I interview all my doctors. They have to be a good fit or else I die. That says, I think, a lot about me. A lot of good and smart things.

Also, welcome to the forums, Martind-28!

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline tednlou2

  • Member
  • Posts: 5,054
Re: Positive since 2005
« Reply #3 on: May 16, 2012, 12:27:43 AM »
Welcome to the forums.  I'm sorry to hear all the problems you're having.  You've given some good advice about docs and therapy. 

Offline martind-28

  • Member
  • Posts: 3
Re: Positive since 2005
« Reply #4 on: May 16, 2012, 03:42:54 PM »
I have to interview Drs.  Some just do not get it.  Others get it completely and want to work with my other Drs.  I had one gastro Dr. and I had to tell him 7 times I was HIV positive.  He wanted to treat me for another underlying problem.  He didn't get it.  Another kindly Dr. I went to see and after examining me he said "I don't think it is the AIDS".  I don't have aids I informed him, I had HIV.  I don't think he knew the difference.  So I go to another, and with one move with medication, he fixed the problem, because he worked with HIV patients, he got it.

The other poster was right on target.  I have to make sure they get it, or I die.

I hope it says that I am taking responsibility for my health and not just blindly handing it to a person just because they have DR. in front of their name.  They call that being proactive in my care and well being I believe.

 


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.