POZ Community Forums
Main Forums => Living With HIV => Topic started by: martind-28 on May 14, 2012, 05:27:19 pm
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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.
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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
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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!
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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.
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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.