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My Truth: My Issues With Adherence

July 30, 2013

Lynda Arnold

Lynda Arnold

While I'm anxiously awaiting being able to write the next chapter in my blog about the battle to get my license back and discuss the various testing I've had, I thought maybe I should talk about my issues with medication and adherence. I know I am not alone out there in this situation. My husband and I were just sparring over the issue again last night.

Don't get me wrong -- please. I am really really grateful to be living in an age of such pharmaceutical advances for people with HIV/AIDS. However, I have been on almost all of the treatments out there. I was medicated early and aggressively. My last treatment was the quad pill. So I would say that I have been involved in the latest treatments as well. Through the years I have had many self imposed treatment interruptions, some with my doctor's approval, many without. While some of my adherence issues have been directly related to cognitive issues such as memory, scheduling, etc., most of them have simply been because I hate taking these drugs so damn much that I simply shut down and cannot find it within myself to swallow that one pill no matter how hard I try or how hard my husband or a nurse or a caregiver or my children beg me. The process is so debasing and humiliating that it alone causes me to be severely depressed. For this reason alone it is normally something we just don't talk about anymore. I just handle it with my doctors.

When making my decisions to comply or take a break, I tend to listen to my body and not panic over the numbers. And to be very clear, I am no dissident when it comes to HIV therapy. I know that being on ART is the better way to go. I believe in the power and success of undetectable viral loads. I just cannot seem to manage that landscape within my own bloodstream. The drugs to treat HIV make me sick, physically sick and morbidly depressed. Even with the use of antidepressants, adjunct counseling, family support, great case management, etc., I am a treatment failure time and time again.

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So with the support this time of my HIV specialist, I am yet again in a treatment interruption. No, I don't know how long I can hold out. The truth is that I promised my doctor that I would work closely with her to monitor myself for symptoms and that we together would get a game plan to treat those symptoms. I agreed to take Bactrim prophylactically. I agreed to faithfully ingest my anti-anxiety and antidepressant medications (I take Topomax, Abilify and Elavil). I agreed to stay in counseling, both individual and couples counseling. In other words I agreed to stay on top of it. So far, I've held up my part of the bargain.

Symptom wise, I'm doing OK. I'm not even going to consider my brain issues today because I don't see my neurologist for another month and in my mind I am demented yet stable. It's too painful to think otherwise for me at this point in my life! It's all the little physical things, however, that add up.

My dentist yelled at me because I need to tell my HIV doctor of all the sores in my mouth and my gum infection -- I promised I would; my appointment is on Aug. 1. My gynecologist wants me to tell her about my yeast infection that keeps recurring; I promised I would. My podiatrist wants me to discuss with her possible surgery to remove this giant wart on my foot that won't seem to clear up no matter what other treatment he tries in addition to a nasty fungal infection on both my feet. My hairdresser is very concerned about all my loss of hair and thinning hair that keeps getting worse and worse in addition to what appears to be some fungal infection in my scalp. My husband wants me to tell her about my extreme fatigue requiring naps during the day, the increase in peripheral neuropathy in my feet that I am complaining about and the increase in night sweats that are soaking my pillow and sheets a few times a week.

I just really want to tell her: Thank you. Thank you for letting me feel autonomous. Thank you for treating me like a real person. Thank you for listening to me. Thank you for letting me feel some sense of control in my own care. I believe that all of the above symptoms are manageable in one way or another and for me they do not justify in my mind taking the HIV drugs that cause me such horrendous side effects and deep depression. I know that one day I may not feel the same way and I know that when that day comes you as my physician will be there to offer me the drugs and that time I may say "Yes, I am ready to take them." That will be a day of tremendous reckoning for me; that day has just not come yet.

Until Next Time.

Lynda

Read Lynda's Blog, Get Outta My Head, You Crazy Virus!

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Reader Comments:

Comment by: Mike (Baltimore ) Fri., Aug. 9, 2013 at 2:16 pm EDT
This sounds hard. Gosh, I wish you well. Please keep writing.
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Comment by: scott miller (miami ) Sat., Aug. 3, 2013 at 10:58 pm EDT
Use a post it note for memory problems. You don't have to LOVE them to know they're keeping you alive. If you "HATE" taking them,don't. I do suggest however that you pull up pictures of our brothers and sisters in the late stages of AIDS (mid to late 80's and the 90's). Take a long hard look. It usually changes changes an attitude (perception) really fast!
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