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Nursing students
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??'s about your personal experience
      #2861 - 04/05/00 03:04 PM

Hi,
We are Simmons College Nursing students with a project at hand. We are looking for one adult and one child(<18) or parent of a child living with HIV/AIDS to answer a few simple questions about what it is like to live with this disease. No strings attached, one simple interview is all we ask. Questions include: How has this diagnosis affected your daily routine? What lifestyle changes have you made or have you incorporated since your diagnosis? How long have you been living with HIV? What, if any, complications have you experienced since your diagnosis? What support systems or services have you utilized or are aware of? What is a routine trip to the physician's office like for you? Does it include any diagnostic tests? What medications do you take daily? Have you experienced any side effects from medications or treatment?
Thank you for taking the time to inform us of your experiences. We greatly appreciate your generosity of time in answering these personal questions.



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Anonymous
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Re: ??'s about your personal experience new
      #2862 - 04/05/00 03:05 PM

>>>Hi,
>>>We are Simmons College Nursing students with a project at hand. We are looking for one adult and one child(>>Thank you for taking the time to inform us of your experiences. We greatly appreciate your generosity of time in answering these personal questions.

what's it like, its mostly just like always except the constant reminder when its pill time, or some new strange side effect occurs, or i can feel the fever though small on my skin like never before. for one nano second it brings you back to reality and i think oh, this is the hiv, you should be scared now, but the funny thing is i'm not.

found out by applying for life insurance for that long awaited house (i just turned 50!) - scary letter saying there is something they cant tell me, a doctor has to. those 24 hours waiting to find out were the worst ever. when she told me, i immediately asked how long do i have to live and how will i die. she laughed and said its not like that and i hope she was right. from the time i knew i asked god to give me the strength to take whatever this was going to be and he has.

started on cocktail of crixivan, 3tc and azt and that put me in the hospital for 2 weeks, off work for 5. so sick. but off the azt, on to zerit and now ok except for stupid little things. my hair seems to be going, that is a major bug to me (female!), my skin is shiny, i have small scab things inside my nose and sometimes at the corner of my mouth that are a bitch to heal. not all the time but sometimes. my energy level is better (cocktail for 4 months now) but not what it was. apparently i have had this for 5 years. before life insurance thing, i was experiencing bad bouts of flu, longer than normal, and lots of bladder and yeast infections. they are gone now, flus still take a bit longer to go but i havent gotten one as bad as co workers.

my mate of 4 years is fine. how i dont know. not only is he ok he is suportive as hell. we have a 5 year old (not my natural child) and i realize every time he hugs me or makes me laugh at his bizarre way of looking at the world that i have to and i will live for him. he needs a mommy and i need this child.

i have a 27 year old daughter also, she has taken it well. my having insurance to pay for the $3000 medicine per month has helped everyone take it well, but without it, where would i be? i dont know.

i dont know how how all this will go. i am smart, love the interet and try to keep totally on top of all new things. but i believe what will be, will be. it will just be how i live with what the 'will be' is.

boss knows, people at work, most know. regret that now but too late. basically i just try to live the best i can, and try not to dwell on it too much. my motto is look at magic johnson, he's still kicking so why cant i.

sex is not really on the menu now, although boyfriend loves me we have had sex probably 3 times since, all condomed up, not too thrilling. i feel so poisonous that its hard to feel romantic.

diagnostic? levels were pretty bad at first test, but validity of test is a bit shaky - one week after blood taken. going for new tests any day now.

hope i helped. hope this helps us.




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Anonymous
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Re: ??'s about your personal experience new
      #2863 - 04/05/00 03:06 PM

>>>Were you having any health problems before you got the test results and went on the medications?

see one of my many rambling paragraphs, yes, longer flu periods, feeling of either high sugar or low sugar as i was constantly outrageiously hungry and ate like a beast but never gained weight, in fact for the first time in my life i could eat like that, lost 15 pounds or so and really thought it was a sugar problem! also had many bladder infections, really bad painful ones, then when taking antibiotic vaginal yeast infections too. looking back i had the crusty things in my nose and on the side of my mouth before too,

but now that i am on medication, the weight has come back! i have to be careful just like before. i wonder if that means i am getting better. my theory is that when my viral load was higher and CD4 lower before pills, my metabolism was running higher cause of fevers, etc. ??? now maybe i am a bit better and metabolism running back to normal? also after diagnosis, before meds, had a bad bad bout of fever chills things before my eyes, so sick. no one has ever been able to explain what that was. had the tests for all the big guys (toxoplasmosis, had a brain scan, chest x ray, etc.) turned out i had salmonella too but didnt have diarreah. i dont know. are you guys the nurses?




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Anonymous
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Re: ??'s about your personal experience new
      #2864 - 04/05/00 03:07 PM

I was diagnosed in June 1991 with HIV at a county health clinic. As soon as I was diagnosed, they wanted to put me on AZT. I walked out of there so fast and never went back. In February of 1998, after 3 months of being very sick, my parents forced me to go to a hospital, where I was diagnosed with PCP. I really think at that time I just wanted it to end, and be dead. My parents wouldn't hear of it. I went back to that same clinic from 1991 and got in touch with a representative who got me into the Ryan White Program. He got me a very good doctor, and my first visit was March 30, 1998. Immediately, I was put on a 4 drug cocktail consisting of Epivir, Zerit, Norvir, and Fortovase. My first blood test showed a CD4 count of 5 and a viral load of 500,000. Yes that number is correct. The following month that doctor told me after looking at my test results, that I should not have been able to walk into his office. After a year of taking them drugs, my viral load is undetectable and my CD4 count is steadily increasing 235 as of April 21. My life really hasn't changed much, except now I want to live. I believe that my parents are the main reason for this turn around and of course my doctor. He keeps me very up to date on different medications and the like. He doesn't want to change anything though because I have done so well with the treatment I'm on. I hope this has helped you and I'm sorry it's so long.






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