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My decision, right?

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This is my first time posting anything since I was diagnosed over twelve years ago.  I guess the prompt is that I'm confronted with taking meds for my health rather than for a pregnancy.  Since my induction into the club by the first husband, I've pretty much lived in a pseudo-denial state and have struggled with the decision to take meds even though my doc says it is unavoidable.  I've taken them while pregnant for obvious reasons, but even then it was a constant battle to be consistent.  I stopped immediately after each pregnancy and simply monitored the slow yet steady rise in my VL.  My CD4 has always been below 400 since I was diagnosed and my doc says the call should be when it hits below 250.  I've come close now yet my VL is 19k. 
I was prescribed Complera over 2 years ago but I'm only one week into treatment (I stopped going to the doc because I got tired of him asking when was I going to take them).  This has been one HARD week, diarrhea, abdomen pain and cramping, nausea, vomiting, headaches, etc.  I feel like I'm dying and can only imagine how much worse the end will feel like.  I'm considering stopping and just allowing my condition to its course.  I have so many feelings about this decision, like is that suicide? is this fair to my kids? but is it worth living a long life in pain and misery or short one doing the things I enjoy doing without restrictions.
I guess I should talk to my doc but I'm not sure what good that would do.  I can't help but to feel like I'm not ready for this phase.  Will this pass or is this even normal???  Then again, what is normal???

Hi Mary,

First, no, it is not fair to your kids.  You knew your condition when you got pregnant, yet went ahead and had the children.  You need to do right by them.  Trust me, I made so many mistakes as a parent, and wish I could go back in time.  Sometimes the guilt is extremely heavy, please avoid that.

Second, life is not going to be miserable if you take the meds.  I understand you're ill now, and you should probably be seen by a doctor, but this may not be HIV related.  I've been through near-death experiences due to AIDS, and they are not fun.  This was before the advent of meds that people diagnosed today have the benefit of taking.  I know you've heard it said, but you can still live a long life, and enjoy it, if you take the meds. 

I was infected by my first husband, he died when I was in my first treatment (for drugs/booze) in 1989.  I was diagnosed with AIDS shortly thereafter and had the wasting syndrome, went down to 80 lbs (I was 5'10"), and had Hospice care.  Not fun, not at all.  Not fun having to wear adult size diapers and having even kids clothes be too big.  Survived that.  Was in a coma due to a bladder infection where the poison got into the bloodstream.  After coming out of that I couldn't talk for a couple weeks.  And I lost a large chunk of time.  Not fun.  And the meds back then were shit, lots of horrible side effects. 

Now I'm almost done with a graduate degree and work part-time for an ASO (Aids service organization).  It's like miraculous.  I also have 3 grandchildren now, and I can tell you, that is worth being here.  And you will have this someday also, just please take the meds.  If you want to talk, after posting 3 times, you can send and receive personal messages.  I'll message with you and give you any support I can via this forum.  We're here to support you, please continue to reach out. 


Hello Jane. Welcome to the forums. I think Betty has said it all...please take the treatment.

Yes please stick with the treatment.  There are so many more options out there than when you were diagnosed twelve years ago.  Maybe you could discuss your symptoms with your doc if they don't go away and get on something else?

Ain't Betty the Bomb?  You need inspiration? Then mine Betty's posts. She hasn't even touched on the incredible physical torment she's navigated to get to classes, to work, to life. I agree 100 percent with her. Remember the words to the tune.. The best is yet to come...? It is true.  If your regimen doesn't even out see if you can try another one. Near-term, talk to your doc. Ask for some anti-nausea meds. You are so lucky to have kids. Surely you wanna see their adventures unfold.  Yes?


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