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New Year, New Meds

| 17 Comments

First, I want to wish everyone a happy, healthy new year, and thank everyone at POZ for embracing me, albeit anonymously, into the POZ-blog-family, and allowing me to share my story as it evolves.

 

This holiday season was unlike any other for me. On December 23rd, I went to my infectious disease doctor, to discuss the trend that was revealed by my most recent blood work; my CD4 count was steadily decreasing while my viral load had nearly doubled. With my doctor and both of my parents by my side, we all agreed it was time to start my HIV treatment.

 

My doctor wrote the prescription for Atripla, the once-a-day, three-in-one pill, and instructed me to come back in 1 month for a blood test to see how the virus was reacting to the medication. My doctor reminded me of the importance of maintaining a strict medication schedule. He told me that I must take the pill every day, religiously, and as close to the same time each day as possible to maintain its effectiveness. He warned of the most common side effects; drowsiness, dizziness, and vivid, "techni-color" dreams, of which he estimated about 20-30% of patients experience. He assured me that the majority of patients that experienced these side effects felt that they vastly decreased or completely disappeared after 3-4 weeks of use.

 

The timing was perfect. I had just finished taking my last final exam and I was at the start of a three-and-a-half week break. For just under four weeks I am now free from classes, reading, exams, and can fully focus on my adjustment to the new meds.

 

My parents and I left the doctor's office, thanked him for his good advice, picked up my first-ever bottle of Atripla from my pharmacy, and headed to my home in New Jersey where I would spend my first week on medication. Normally, my holiday is spent with just my immediate family, but this year one of my sisters had a guest with her, who I have not yet disclosed my status to. Because I didn't want to disclose my status to our guest, we didn't openly discuss my diagnosis or my new treatment. My parents and sisters discretely checked in with me throughout the day, everyday, to make sure I was doing ok. When the time was right, I told them that for the first 5 or 6 hours after swallowing the pill I felt dizzy, fuzzy (for lack of a better way to describe the light-headed, 'out-of-it' feeling), and had numbness in my face in the mornings and headaches in the evening. Based on my outward behavior, my family was surprised to learn that I was so affected by the meds. "But you're acting so normal," they said. And they were right. Even on those first few days, I was still able to take part in most of our holiday traditions; I played family games, cooked a family meal, watched movies, and even played in the snow for 'old-times' sake.

 

My first few days on meds served as the perfect metaphor for my HIV journey thus far. Inside, I felt dizzy, fuzzy, and frustrated, while, just by looking, no one could see what I was really experiencing. I am now no stranger to hiding how I truly feel without others being able to visibly detect the reality of my inner experience. The more I reflected on this, the more I saw that the physical and emotional aspects of my HIV experience were parallel in various ways.

 

First, just as the overwhelming emotions that followed diagnosis eventually faded as I coped with my status, the dizziness and fuzziness from my new meds fortunately faded as well. I felt more and more like myself with each passing day. Second, just as my friends' and family's support got me through the emotional experience that followed my diagnosis, I also felt comforted when I talked about what I was experiencing physically with trusted friends and family. Verbalizing the worst of the side effects helped me realize that they were actually quite manageable, and I was in fact able to act quite 'normal' despite them.

 

Perhaps it was for the best that I could not freely complain about the side effects as I experienced them this past week. If I was with only my family, I may have been more likely to groan about how unfair this whole situation is, or even yell out in anger, letting tears form as my frustration with the side effects grew. Because I had a house guest, however, I simply had to suck-it-up, sit on my couch when I felt too dizzy, and blame my few hours of extra couch-time on fatigue from a stressful semester at school. In turn, I pushed myself a little more than I otherwise may have to go about my day as if I was not taking my HIV meds for the first time.

 

I don't mean to understate the emotional or physical experience of beginning treatment. I think allowing some time to grieve for your old, medication-free self, and even allowing yourself to feel some self-pity and giving in to some self-indulgence is hugely important for the healing process. (My therapist recommends a full body massage, for example.) But it was important for me not to get wrapped up in those bad feelings of self-pity, or allow them to obscure the reality of the not-so-severe side effects of modern HIV treatment.

 

My reality (which of course will be different for everyone because every body reacts differently to medication), is that as I sit here, writing this blog entry, just a few hours after taking my ninth-ever Atripla pill, I feel about 90% side-effect free. I remember reading first-hand accounts of HIV positive people beginning medication even just 10 or 15 years ago, who had drastically more difficult experiences than mine. The older pills sounded awful. They were described as chalky, difficult to swallow, and created much more significant side effects for more patients.

 

So, as I swallow the smooth, one-a-day pill I am blessed to have for only $10 a month on my health insurance plan, I try to remember all of my 'brothers' and 'sisters' who came before me and had to struggle with three-a-day regimens of pills they could barely swallow, and then fought to keep down. Or worse, the millions of people around the world who today, still do not have access to these life-saving pills that I can pick up at any drug store in Manhattan for less money then I spent last night celebrating New Years Eve.

 

So moving into the New Year, I hope that when I swallow my Atripla every morning, rather than allowing my anger and sadness about my diagnosis to consume me, I will instead try to remember how truly blessed I am to have my medication at all.

 

2010 was the most difficult year of my 24-year old life, and one that I'm happy to leave behind. Despite all of the ups and the big downs of 2010, I still feel extremely lucky to be entering 2011 with access to HIV meds and access to multiple HIV support groups and networks. I'm lucky to have the support of my amazing friends and family and lucky to have the chance to anonymously share my experience with such a strong, extensive community of peers.


I hope everyone can look into 2011 and see some of the hope that I do for this year. Despite our common diagnosis, we truly are blessed to have the resources we have available at our fingertips, at our drug stores, and at our community centers.

 

Because 2011 marks the beginning of my physical "fight" against the virus in my body, I feel it appropriate to also start more aggressively addressing the emotional side of my diagnosis, by taking advantage of the resources I have in my community. So, in the first week of 2011, I plan to attend my first HIV support group. I'll be back to blog all about it.

 

Happy New Year!

17 Comments

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Comments on Anonymous's blog entry "New Year, New Meds"

It isn't unusual to react to HIV meds for a while, dizzy, fuzzy, sleepy, etc. They aren't vitamins, remember, they are very powerful anti-retrovirals. Just keep up the regimen properly, and on time, and your body will adjust after a few weeks.

When we are week, we are strong in the humbleness to see how special life is day by day.
I am sad you have to face these bumps in your life. However I am very proud of your courage and strength of love from your parents, most impressive in this love. Day by Day is my life, while making long term goals to have a wonderful life. I did not start pills for 10 years, and then Combivir, Epivir. Now on Atripla, 5 days on 2 days off (some times different), because ever ones body is different and it works for me. I take the Atripla now at night before I sleep, no problem with bad dreams. I pray at times when I take these pills. If I do take this pill during the day, I try not to drink coffee for it makes the Atripla speed up to race my brain a bit, again just for a few minutes. The fuzzy feeling I have all the time with Altripa, but only last about 10 to 30 minutes. At night time I sleep well and no fuzzy feeling. The reason I titrate my pills or take the dosed the way I do because of a little theory I have, I need to adjust my pills. I rarely have diarrhea or constipation and try to have a good diet. For all the human immune system I believe is based on my diet, both physically and spiritually. I always supported going out of the box to alternative treatments too. I started Dr Hydla Clarks treatment opinion every 5 years or so since the 80's. for it is based on a parasite attack theory that zaps out important nutrients needed for the immune system. Just a little information that I use and please take it in a spirit of sharing for things are not always as they seem, even in the most tiring times. Keep you spirit high and filled each day sister and walk holding your head high, for you are the Apple of God's eyes and this too will past and I pray for it to be sowed.

Go ahead girl! it was too hard the beginning for me a year ago but still i'm here, alive and fighting for a better future. I'm taking same medicine and i must tell you works pretty good.CD4 720 VL Undetectable. Look for help,thanks God you have your family around you, giving you support, Group support and counseling is also a great option, still i'm having both and i'm feeling much better now. Don't forget God is besides you, pray every day and give thanks for your life and your beautiful family!

I am 22 and was very worried about being effected by side effects of HIV treatment. I started my meds the week before Thanksgiving this past year. Atripla as well, once a day at bedtime on an empty stomach. Two months has almost past now and I am completely side effect free! Thank you for sharing your experience I really hadn't thought about how blessed I actually am.

The side effects are different in everybody , is been a year since I know I have HIV , I'm pretty good , taking medication , my VL is undetectable but still low cd4 ( I think is for the missing days to take the pills ) that's why u have to take u pills everyday .is hard to me ....but i'm still fighting ..

Hey Anon,

I can empathsize with your situation for sure as I have been HIV+ since 1989 ...

Just to share common health issues and to let you know I believe you'll live a full life if you stay on your meds, I have had to change my cocktail of meds at least 5-6 times in 21 years due to resistence ..

Let me tell you, I used to have to take up to 24 pills per day until HIV medicine finally started to "catch up" and make taking medicine less burdensome ..... I also used to inject myself (Fuzeon) twice daily and that lasted for about seven pain-staking years ... and certainly left marks all over my body because I had to shoot myself in different (fatty) areas ...

That became really painful when I was running out of fatty area due to the lipodystropy ....

Anyway, I am ranting .... Due to modern medicine I am only have to take seven pills once daily and one pill (Isentress) twice daily... So, from 24 pills and injections down to eight pills per day, we've come a long way baby ...

My HIV doctor is totally amazed by my numbers .... CD4 near 900 ... yes, 900 .... and VL is basically nondectable .... :o)

This is first time I have been on this site, so I hope you get this .... Hope you and all the others on this site are doing well and are healthy ....

I started taking Atripla in September 2006 shortly after it received FDA Approval and when my T-cells were hovering between 350 and 400. My VL at the time was not particularly high, e.g. 9,000 to 15,000 but I was aware of the infection and had read extensively on the advisability of starting meds earlier than later. Happily, I had no noticible side-effects to the medication...a necessity due to my work, and within one month my VL was undetectable and my T-cells began a slow climb which I believe was the result of not only the Atripla but also a regimen of vitamins and supplements I take daily. I can say that I have never missed a dose of Atripla since starting. But, when it's only one pill a day to keep track of that's not too difficult. Yesterday I received my latest three-month lab results and my VL remains undetectable at <20, and my T-cells are at 645. I feel blessed that this is the case and hope that at least a few more years with this one pill a day "wonder-drug" before I find myself faced with having to switch to something else.

Since the late 80's when I was 1st diagnosed w/HIV I have taken alomost everyone of the pills offered as they arrived on the market. I remember when 7 pills 3 times a day was the "best " thing for me. Maybe it was I am still here and now enjoy Atripla once a day. It has kept my viral load undetectable for more than 4 yrs. now. My CD4 however has not gotten as high as we would like but now they say there is some measurment of % of virus in my system and even with my 200 count they say I am doing well. I have some side affects of having taken all those drugs but they are manageable for the most part. I just wish I could comfortably afford to pay my 15% co-pay to get the Atripla, it;s about 25% of my income in Jan. & Mar. then when I reach the "donut hole" the drug company starts picking up the tab. Screwy system, hope the heathcare plan gets this fixed I know they are working to eliminate the coverage gap but it may not be soon enough for some of us. Happy New Year, made it to another.

Your blog moved me deeply. I, too, started by HIV meds over my 3-week holiday, having just been diagnosed this past November. I thought I would have years to contemplate treatment, but my CD4 count was under 350 and it was time to start. The end of 2010 was like a lifetime compressed into six weeks. I was diagnosed on November 9, disclosed to my partner and immediate family over the next month, filled my prescription on December 19, and began treatment on December 20. Like you, I spent the holiday in the company of my family monitoring my side effects and adjusting to my new life.

The most moving image in your blog for me was that of picking up your bottle of Atripla at the pharmacy with both of your parents by your side. I am a little older than you - thirty-five - but young enough to feel like my mother's baby and like her approval and support mean everything to me. My father died when I was eighteen, and since then I have always felt like I had to be the ultimate source of comfort and joy for my mother. Coming out as gay was hard enough, and disclosing that I am HIV-positive is something I never imagined I'd be able to do. She surprised me by staying totally poised and telling me, "This is a time for your family to rally around you."

My biggest blessing is my partner, who has been with me every step of the way and truly sees HIV as our challenge, not mine (he is negative). Like you, we are among the lucky few to have health insurance, in addition to a home of our own, stable jobs, and a network of progressive friends. I have been working in the global AIDS movement for about a decade, so the resources at my disposal are more than anyone could ask for. About two months into my diagnosis, I can even begin to imagine a day when I will enjoy telling everyone I am HIV-positive and using my status and my expertise to help others.

I read your previous post about your challenges with disclosure and wonder how you are doing with that now, especially now that you are on meds. I thought about you a lot after reading that. It occurred to me that you are at a stage of life when the boundary between public and private is very blurry, because you are forming the friendships and bonds that will last the rest of your life. You presumably have not found your life partner and formed your own "family" around which you can draw a zone of privacy. My only advice for you, if you want it, is that I think this will change for the better. As you get older, you will feel more entitled to your privacy, and while I don't think that means you should keep your status a secret, you will find disclosure easier to negotiate. Your post reminded me that the needs of younger people (and I hope you don't think I am infantilizing you, because you are obviously a mature adult) are so often ignored in this epidemic, and that the advice not to disclose often comes from an older generation and is easier said than done.

I wish you only the best for your life on treatment, for your health, your happiness, and your success in graduate school and beyond. Thank you for your eloquent and dignified words, and thank you POZ for providing this amazing forum.

I'm glad Anon had it so physically easy the first few weeks. I started Atripla the week before this past Thanksgiving like Raleighwood but my first 15 days were total hell. I ran a fever the first two days and I constantly vomited through day 15. I wasn't even able to hold down water for the first 3 days. I lost some weight and looked like death. However, and I kid you not, on day 16 I woke up and it had all stopped. It was if my body flipped a switch. The funny thing is that my doc, too, told me the biggest side effect would be the dreams. He emphasized that because several of his patients report having violent nightmares. At the time I was all set to have some crazy dreams. Do you think that has happened one time? Haha, nope.

Thanks for the article! I wish everyone a great new year.

I read your article-and had a flashback to ten years ago-when I started losing weight and didn't know why. I was in denial- I let myself lose a lot of weight and finally my Mom said I had to go see a doctor. I , of course , was
positive- my T cells were surprisingly still good- but my viral load was thru the roof. I remember first getting the news from a grief consultant at the clinic- she had tears in her eyes and I thought I was doomed. We tried 2 medications, until I was able to stomach Sustiva and I stayed on that until Atripla became available. I always take it before I go to sleep-and the first couple of weeks-I had vivid dreams-not scary-just bold and detailed. I can
tell you that I am now and have been for years-at my prior weight-and
undetectable. I go in for routine visits and its the same consistently-I just
take the pill before I go to bed and fortunately, I live a very normal life.
Dating is not a piece of cake- but I'm healthy and optimistic about the future.
I wish you all the best in 2011. Thanks for sharing-it helps everyone who's been there.

not every one has such positive reactions to meds some people i know have quite severe reactions including myself, where the majority of meds out there react more badly the longer there taken.
but when the alternative is dead supposw we all just to suck it up.

You brought tears to my eyes reading your blog. I am too hiv positive. I'm 26 yrs old and diagnosed back in 2007. How do I join this blog? It would be great to talk about it to someone. I am always keeping everything inside.

its funny you did this blog on meds i need to go get tested ive been preparing myself for the results i guess you can say to soften the blow my last partner was a definite candidate smh @ myself for being so careless but anyway i done got past the dumb feelings the hardest part about having the virus besides the stigma and discrimination well the death part isnt that bad for me i love my lord and i know i will be called home one day anyway but the medication that really bothers me its a reminder and besides that i have adult add and doing something routinely everyday isnt easy for me at all especially pills the side effects frighten me and i dont even take meds when im sick i let my body fight it and my body has done a great job thus far but to have it have to depend on a pill to do its job good is hurtful it takes away my independence smh i dont what to do but i do know the first step is getting tested i just read one of your comments and the blogger was diagnosed the day after my birthday that couldve been me already knowing and getting proper treatment is there anything anyone can tell me about not prolonging the inevitable im just really scared and i think about the baby im carrying why isnt that enough for me to just say excuse me but to hell with it smh the baby is kicking strong and i feel so ashamed everytime i feel it please pray for the baby to not suffer due to my neglegence i dont know what to do anymore this is not me im normally more responsible the fear is eating at me inside and out just need advice and thanks for these sites because the more i read the blogs th more i can cope once i stop being stupid and get tested good thing im not the type to switch partners until im sure the other didnt leave anything behind but yeah anyway i ranted just now im scared to take meds i never really had to i just hope i learn to live woth it and not against it you all are very strong and empowring in more ways than you know thanks you for helping me im just going to do it like nike lo

God bless you baby girl

Hi,

I read your blog. I am feeling as if you are just writing the things which we experiance in our daily lives. we all want to be with someone special and caring. but the way you have expressed your feelings is really great.

somehow I feel that even though i had many bad experiences in dating after being diagnosed, i still prefer to be with someone of same HIV status. actually i dont want to exploit someone's love for me to my pleasure. and believe that you feel the same thats why most of us would rather be true and avoid harming someone.

Thanks for posting such a beautiful blogs, keep posting.

Soulmate

Hi you can do it and you will make it . I just wish that out there should sot of support and groups that will help people after they found out their status. I'm an HIV positive for 8 years I been married for 27 years I have 3 kids and a husband and the only one that knows is him. We have not have any sex for 9 years because he is not HIV positive I would not like it to give it to him. I think we still together because of the kids but they are getting old . I just want to know if there is any groups that deals with this type of situation ? I have not told my mother because she is 76 years old and I would not like to stress her out. And my husband and I don't talk about it . I'm proudly to say my viral loud is un detectable . How can I talk to my husband that this is for better or worse I need to talk to some one that is in my same situation .

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This page contains a single entry by Anonymous published on January 1, 2011 6:38 PM.

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