POZ Community Forums
Main Forums => Positive Women => Topic started by: Mary_Jane01 on September 29, 2013, 12:18:22 pm
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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???
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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.
Betty
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Hello Jane. Welcome to the forums. I think Betty has said it all...please take the treatment.
Karry
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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?
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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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Hi Mary Jane
Welcome to the forums, I have nothing to add except please, PLEASE listen to Betty and emeraldize they know exactly what they are talking about, let them be your guide to a better and brighter future, for you and definitely for your kids.
Aroha
Jan
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Thank you everyone who chose to respond. It has been a few weeks and although I still struggle with the decision to continue, I've decided to at least keep going until my doc. appt which I couldn't get in until the end of the month. I looked up the meds and found that I needed to eat at least 400 calories when taking it so that helped some. Now, I'm only experiencing symptoms similar to morning sickness that lasts for the majority of the day and yet I don't want to eat but have to when I take the meds. So in short, I'm sick for 8 hrs, sleep for 8 hrs and if I'm busy enough to not think about it, okay for 8 hrs which I pray happens at work...then I'm a mess at home with my family.
It took me a minute to respond because I wanted to really think about Betty's response, "not fair to my kids". I am appreciative of how open she was in sharing her story and I can understand the point of view even if I don't agree 100%. Am I being selfish to say I don't want to take meds right now, perhaps. Simply put because I didn't 'feel' sick prior to taking them. I was active, rarely caught a cold, not moody, and loved participating in everything they participated in. But now, I'm sick most of the day, in the bathroom more, and perhaps psychologically manifesting sickness simply because I face it daily now with a little pink pill.
Are women who have conditions that put them at risk of death during childbirth being selfish when they choose to still have a baby? Did I take my meds when I was pregnant...YES. Did I fight off the overwhelming desire and constant ridicule for not breastfeeding my child because I didn't want to harm them...YES. I've sacrificed a lot for my kids and I have no regrets for that decision. I thought my life was over when I was diagnosed and that I would never have a daughter, and now I have two. I thank God for the opportunity to have been their mother during the time we've had. But am I prepared to 'be sick' when I haven't fully accepted that I am sick??? Not sure. This is hard.
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Again, thank you Betty...I keep reading your post over and over hoping it will sink in. I too was infected by my first husband who turns out knew he was positive but anyway...
I've been blessed with more than many and am married to a negative man who accepts me and my shortcomings. (big shortcomings) So, I'll be okay. I have no choice, right?
One day at a time...maybe it will get easier. From what I gather from you wonderful ladies is that it will.
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Hey MJ
Have you called your nurse or doc to let them know what you're experiencing?
You might find they'll prescribe compazine for you. It is fast-acting. For sure they'll want know how you're faring.
If you're concerned this will escalate into a visit, just lay it out and tell them you want to make it through the adjustment phase, if possible, without coming in. If a visit is no big deal for you schedule-wise, then if they ask go in and chat.
By the way when I read your recent post I realized something you and I have in common. You felt fine before you went on meds. So, that's the good news--you were not on death's doorstep before starting. You had a 12-year run of no meds. Mine was 7 years before the CD4 showdown began.
You got this. And as you noted, you've got so much to look forward to!!
Em
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Mary Jane,
I'm glad you checked back in with us. What I said about it not being fair to your kids was in no way judgmental. Lord knows I've acted selfishly while parenting. Like I said, I have a lot of guilt from the raising of my daughter that went wrong, so if you can avoid that, it's worth it.
I agree with Em, you need to let your doctor know about feeling so nauseous. There are a couple meds that can help with that. I've never taken Complera so unfortunately I can't comment on that particular med. I take Stribild, even though I'm treatment experienced. I've been on meds almost since being diagnosed, and I can tell you the meds today are much better than they used to be, if you can imagine that since you are getting ill. The AZT actually used to cause anemia, so many of us had to get transfusions. Besides constantly puking. I also have a long term effect that was started by the early meds-neuropathy. The nerves in my feet have been permanently damaged. I had to give up a 5-speed sports car because I could not feel the clutch to shift it properly. I also cannot cross my left leg over my right because my right foot is so bad that it feels like it's on a hot plate, with sharp pains going from my toes up to my knee. So, I can relate to having side effects. But, I try to look at the positives in life-my daughter, grandkids, job etc. And being a grandparent is awesome. You'll be there someday.
I understand it's difficult to keep going when you're experiencing some difficulties. That's why I believe you need to talk to your doctor. You shouldn't have to deal with constant nausea. But, hang in there. It will get easier. Have you ever considered counseling? Just a suggestion.
Please continue to check in here. We care, and we're here to help you through!
Betty
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Hello ladies,
Just checking in...It has been over a year (I'm not even sure if this topic is even active anymore) but I wanted to say I'm still here. NO pun intended. My doc did switch my meds to Stribild (sp?) but I have yet to take it. That was over a year ago. I have not been back to access my numbers.
Typing this makes me feel guilty because I don't want to come off like a pity case and it is hard to describe. I just have not gotten to the point of believing it.
I started a new job so I got swept up with that and the volunteer work I do. Denial is a real thing...don't ever believe anyone who tells you otherwise.
MJ
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Hi Mary Jane,
I hope you will check in sometimes soon to read this.
Yes, denial is real....and I know this first hand, because I lost a loved one to denial in February. My family is still struggling to come to terms with it. The pain is too much..and the questions are too many.
She started treatment and stopped. Five years after she stopped treatment she became very ill. She suffered a lot in hospital before she died. Toxoplasmosis affected her brain. She could barely understand us when we tried to tell her we loved her despite her diagnosis. Doctors tried to put her back on treatment, but she died 2 days after starting treatment.
In a way, I blamed her. I will be honest with you, I did. It was her decision, that I agree, but she had no right to subject my family to the pain we had to go through seeing her die.
She could have taken her treatment, and she will be with us today, living, and doing the things she loved. But she decided otherwise.
She is gone...and we live with the pain and the questions.
I must apologise ahead of time if I come off as harsh or judgemental to you, but its because I have seen and felt first hand what denial can do.
I do hope you make a decision taking into consideration your loved ones, because they will be the ones to live with the pain and the questions.
Karry