As usual I have neglected this blog so much that even I thought it was no longer functioning. Then I realised it was I that was no longer functioning or for that matter writing. Anyway, here I am and I'm coming back with a not so happy post. I'm not even sure why I'm sharing this but non-the-less I am, so read on if you care to but remember it's not a very happy post.
As many of you know or maybe you don't either way I'll remind you that I have been and still am HIV positive and have been since 1986. Now the fact that I have lived with this dread disease for 25 years and am still around to be writing about it is wonderful. Well, wonderful that I'm alive not wonderful that I've had to live with this disease for so long and will continue to do so for the rest of my life. I am one of those unlucky ones that watched one to many of my friends loose their lives to this disease including two of my own partners. It will actually be exactly 25 years to the date on the 16 of this month that I found out I was positive. It's funny how you remember certain life changing things. Well maybe not so much funny as just plain odd/interesting/strange, you get my point.
I am lucky in that I was able to survive long enough to have access to the antiviral medications that became available in 1994. Those drugs and have extended and saved many peoples lives since then. I'll be honest it's not been nor is it for anyone a joy ride taking these medications with all of their various side effects like constant diarrhoea, nausea etc. Regardless, I persevered and finally found a combination that provided me with the protection I needed and had the least amount of side effects. Now, I have taken this combination of medications for over 9 years and through all of that time they have kept my little friend (aka the virus) at bay, tucked away in it's own little corner not bothering anyone.
The drugs, if you don't already know, are supposed to keep the virus at such a low level that it has a hard time replicate and as such has a hard time destroying your immune system. At the same time by holding the virus at bay and with your immune system not under constant attack the system itself is better able at repairing itself and bringing your defences up to normal or higher levels of protection. My counts as far as the virus is concerned are always in the undetectable range which is where we want it to be and my immune system albeit on the low end of normal nevertheless is in the normal range. That is until 4 weeks ago...
It seems that after all of these years of gliding along rather smoothly. My little friend has decided that it is not content with playing all by itself in that dark little corner. No, it wants to come back out and play in the sunshine with all the other immune cells, blood cells and all the other parts of my body. It just wants to have fun again. Problem is, when it has fun I don't. So, what am I saying? Well, what I'm saying is I now have a detectable viral load and my immune system is headed to the no go zone. Now, we don't need to panic because there are lots of new medications to choose from so there should be some combination I can take that will send my little friend back into his little hole where he will hopefully stay for a very long time. We have done some blood work to see what medications I have apparently be come resistant to and can no longer use and then allow us to to decide what other new medications I can try and we will go on from there.
I know I shouldn't worry but I'm not very happy at the moment. It's not that I was fooled to believe that the virus had left the building. I've not only lived with it for to long but I've also worked in the field of HIV education so I know the in and outs of this terrible disease. It's just a kick to the head and it makes you suddenly feel so damn vulnerable. All from something we can't see with the naked eye but that we got from being naked. Hmmm, I digress Anyhoo, no time to wallow in self pity, nor would I as I did enough of that a long time ago. Lets figure out what we're going to do and just do it. I've got nothing to loose and so much to gain.
7 comments:
Sorry to hear your little evil friend has shown it's ugly self...
I am glad you let us know and have posted. I, for one, was getting worried about you...
Keep up the positive thoughts and your new meds will have positive results...
My thoughts are with you!
Tom
man, you shouldn't shy away from sharing with us. i care!! every time you go silent, i always wonder...
i may be sero neg, but i did go for a month on those pills, a bi-therapy only, after sticking myself with a junkie's needle at the E.R. ... not the best moment of my life. everything turned out fine, but the side effects lasted me for months. so, i frankly CANNOT imagine someone on the tri-therapy on a constant basis.
i am not saying your life should end now, but you've had quite the ride for the last 25 years where others didn't even last 25 months. i've seen so many go, back in the '80s as i already worked at the hospital when this thing came out...
you have options nowadays, embrace them!! just hoping you have proper medical attention that will react in a timely fashion to whatever adjustments you require to insure you get through this.
that's why i like blogging. it's real, if you let it, and you shouldn't feel embarrassed expressing yourself here. this is your home, and you're inviting us here. we are quite willing to hear from you.
BIG FUZZY HUGZ HERE!!
That sucks soo much! I hope it doesn't take too much experimenting with new combos to find one to send the troll back under the bridge. And horribly the stress of it must be making you feel even more down and run down.
Here's a hug from a random Hobartian. ((HUG))
I can relate to your post as we have similar histories. I’ve been positive for most of my adult life and I’m now 54. Thankfully, my viral load is undetectable but my t-cells hover around 300. I’ve been on the same drug cocktail for five years and I know that some day it will become less effective. I’m sure you will find a better drug combination. It seems like there’s always a new drug on the horizon. Stay strong and stay healthy.
I have been away for a week from blogging. I was immediately pleased to see you posting; then I read your post and became sorrowful.
I hope this surge of virus is merely a burp, as they sometimes are. I hope there are Rx alternatives if needs be. I can't bear the thought of you feeling scared.
I'm sorry to hear it's progressed. But I'm glad you're optimistic and that some new meds can potentially kick its butt back into the shadows again!
not sure how to private message you.. (it's shy gran here who lurved your flowers! and your beautiful heart). Not sure if this may or may not speak to you, or if you already are aware of etc but wanted to share the work of brandon bays www.thejourney.com as it has helped me thru survival from csa (childhood sex abuse). Healing the heart no matter where we are in this world/life is important methinks. Bliss bombs are a birthright, just as clean water, fresh air and Love. Thank you for making me happy today.
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