The Bad
I don’t think anything can ever top my experience with having Shingles. As I said, some days are good, some days are bad.
Over the years I have had upper respiratory infections, pneumonia, sinus infections, thrown my back out, ear infections, viral infections, I probably could go on with this for ten minuets. This past winter was especially bad for me. I don’t do well with cold weather to begin with, but it seems like for whatever reason anything that came along I got. Now, I have to explain, yes, I am in Alabama, but it does tend to get a bit chilly and I’m one of the abnormal types that when it gets much below 70ish I am freezing to death. I have always been this way, lol, maybe it’s genetic because my mom seems to be the same way.
I would have to say that the bad (there is a good?) part of being HIV+ is the constant battle of fighting off infections and trying to stay healthy. My last doctor’s appointment didn’t go as well as I had hoped. My tcell counts didn’t change much, and my viral load went down, but not enough to even talk about. Considering I started a ‘new’ round of medications 4 months ago, I had hoped for better. There is concern because over the last year and a half I have lost 73 pounds, of witch I am not complaining about because I have been overweight the better part of my life, however the doctor thinks it’s a problem because I haven’t been “trying” to loose weight. My cholesterol is too high, witch I am told is probably caused by the medications. I’m being put on a low cholesterol diet…how is that going to help if the medications are causing it??? Might I just add a low cholesterol diet SUCKS!!!! I don’t have labs done for another 3 months (unless the doctor decides differently) so I have to at least stick with it until my next fasting lab, and I can tell you I’m counting the days. Don’t get me wrong, I love Turkey and Chicken but both are a bit expensive even if you are only buying for one especially for someone living off a part time income. I generally only spend about $50 a month on groceries so that means I have to get what is going to last i.e. pastas, casseroles and the like.
(Side note: I get side tracked easily if you hadn’t noticed.)
I have been considering asking the doctor for a break on the medicines for six months to try the silver that I mentioned in one of my prior posts, although I’m pretty certain as ‘hip’ as he is (when I first met him his hair was longer than mine, mine goes down to my rear!) he’ll suggest I at least stay on the meds I’m taking for a little while longer.
The bad part is the not knowing what is next. I can’t even count anymore how many medications I have tried over the past 11 years and how many haven’t really done much for me. Yeah, I’m still here, and I don’t plan on going anywhere anytime soon, but as far as lab results go things haven’t changed much and it doesn’t matter weather I religiously take my medication or not. (Some of the medications made me rather sick and I tended not to take them because of it.)
I don’t generally dwell on my condition because I really don’t think that it’s very productive to do so. There are times, however, especially when I’m sick, when I wonder how much longer I’m going to live to tell about this fight. My boss once said to me that he couldn’t live like I do being sick all the time. I really didn’t know what to say to him, except, yeah, you are lucky. Bad. Very bad.
Anyone out there who isn’t familiar with HIV probably doesn’t know that often times you just have a day where you feel so lousy you don’t even want to get out of bed. It doesn’t happen a lot, but when it does it’s hard to explain to anyone why you feel lousy, because quite frankly you don’t even know for sure yourself. It’s been referred to as having an “aids day”. My sister absolutely hates that reference and is quick to tell me not to say that. I have had a few in my time. Bad.
Really, the worst is the not knowing. I’m always at odds with myself about weather or not I should have kids. What if something were to happen to me, I would leave my children with no mom. What if for some reason the therapy didn’t work and the baby ended up with HIV also. What if for some reason one of my children were to get sick and needed blood, they couldn’t have mine. What if they never let the cure be known and I am never cured. What if…what if….what if.
Please always feel free to post any questions or comments you may have.
Over the years I have had upper respiratory infections, pneumonia, sinus infections, thrown my back out, ear infections, viral infections, I probably could go on with this for ten minuets. This past winter was especially bad for me. I don’t do well with cold weather to begin with, but it seems like for whatever reason anything that came along I got. Now, I have to explain, yes, I am in Alabama, but it does tend to get a bit chilly and I’m one of the abnormal types that when it gets much below 70ish I am freezing to death. I have always been this way, lol, maybe it’s genetic because my mom seems to be the same way.
I would have to say that the bad (there is a good?) part of being HIV+ is the constant battle of fighting off infections and trying to stay healthy. My last doctor’s appointment didn’t go as well as I had hoped. My tcell counts didn’t change much, and my viral load went down, but not enough to even talk about. Considering I started a ‘new’ round of medications 4 months ago, I had hoped for better. There is concern because over the last year and a half I have lost 73 pounds, of witch I am not complaining about because I have been overweight the better part of my life, however the doctor thinks it’s a problem because I haven’t been “trying” to loose weight. My cholesterol is too high, witch I am told is probably caused by the medications. I’m being put on a low cholesterol diet…how is that going to help if the medications are causing it??? Might I just add a low cholesterol diet SUCKS!!!! I don’t have labs done for another 3 months (unless the doctor decides differently) so I have to at least stick with it until my next fasting lab, and I can tell you I’m counting the days. Don’t get me wrong, I love Turkey and Chicken but both are a bit expensive even if you are only buying for one especially for someone living off a part time income. I generally only spend about $50 a month on groceries so that means I have to get what is going to last i.e. pastas, casseroles and the like.
(Side note: I get side tracked easily if you hadn’t noticed.)
I have been considering asking the doctor for a break on the medicines for six months to try the silver that I mentioned in one of my prior posts, although I’m pretty certain as ‘hip’ as he is (when I first met him his hair was longer than mine, mine goes down to my rear!) he’ll suggest I at least stay on the meds I’m taking for a little while longer.
The bad part is the not knowing what is next. I can’t even count anymore how many medications I have tried over the past 11 years and how many haven’t really done much for me. Yeah, I’m still here, and I don’t plan on going anywhere anytime soon, but as far as lab results go things haven’t changed much and it doesn’t matter weather I religiously take my medication or not. (Some of the medications made me rather sick and I tended not to take them because of it.)
I don’t generally dwell on my condition because I really don’t think that it’s very productive to do so. There are times, however, especially when I’m sick, when I wonder how much longer I’m going to live to tell about this fight. My boss once said to me that he couldn’t live like I do being sick all the time. I really didn’t know what to say to him, except, yeah, you are lucky. Bad. Very bad.
Anyone out there who isn’t familiar with HIV probably doesn’t know that often times you just have a day where you feel so lousy you don’t even want to get out of bed. It doesn’t happen a lot, but when it does it’s hard to explain to anyone why you feel lousy, because quite frankly you don’t even know for sure yourself. It’s been referred to as having an “aids day”. My sister absolutely hates that reference and is quick to tell me not to say that. I have had a few in my time. Bad.
Really, the worst is the not knowing. I’m always at odds with myself about weather or not I should have kids. What if something were to happen to me, I would leave my children with no mom. What if for some reason the therapy didn’t work and the baby ended up with HIV also. What if for some reason one of my children were to get sick and needed blood, they couldn’t have mine. What if they never let the cure be known and I am never cured. What if…what if….what if.
Please always feel free to post any questions or comments you may have.
posted by Mrs. T at 5:06 PM
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