Sick

katie06's picture

Lately I've not been blogging simply because I've been sick.  For the first time since my diagnosis 4 years ago, I'm actually experiencing signs and symptoms of HIV.  This has been very difficult for me to grasp.  I've denied it and blamed on other factors.  But I know the truth, my body is beginning to lose the battle.  I need to get on medication. 

I've fought getting on medication.  I'm not sure why exactly...  A sense of pride maybe.  For some reason when I tell people that I'm HIV positive, but I'm not on medication yet, they have a sense of relief on their face.  This is true especially in the medical field.  I've noticed several times when I've stated this to doctors or nurses who were treating me for something else entirely, they would seem relieved that I was not yet on medication and somehow happy for me. 

The truth is, I can no longer wait.  If  I continue to wait, I am only hurting myself and my family.  I've not felt well for a several months now.  I'm tired.  I have an upset stomach, a headache, a stiff neck.  I seem to  get every flu-like symptom known and I've even had shingles.  I've missed so much work lately, which is very unlike me.

It's time for me to stop fighting the stigma of medication and take control of my health.  My next follow-up appointment with my HIV doctor is in another month.  I plan to come fully prepared to take home a new prescription.

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Sallymore's picture

I am also not on medication,but I have made up my mind on whatever the Lord said concerning me.Miracles still happens,I am holding unto faith on God's promises but if your faith cannot carry you through be on medication.Good luck

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bee2art's picture

Hi Katie06, I felt the same way as you. Seeing the relief on people's faces knowing my body was "fighting the good fight" was great. But alas after six years my body began to lose the fight and I had to take meds. The good thing is, we have better options nowadays with less side effects. My Doctor wanted me to start meds earlier (CD4 over 500) but I was hesitant. So I went to a naturalpathic Doc and took a million supplements for three more months in hopes of improving my labs. Unfortunately my CD4 and CD8 counts dropped further and I resigned myself to the drugs. Almost two years later I feel great! I'm running again (I was so tired, had no energy) and have had no side effects so far. The choice to start meds is up to you and your Doctor but for me the decision has been a good one. Good Luck!

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Mouse25's picture

I know starting meds is such a big step - Its part of the journey that makes it so final -that this is going to be you for the rest of your life. I started taking Atripla 10 months ago. Its one tablet once a day. I take it before I go to bed at night. I also take Tamoxifen (a tablet for breast cancer) I had breast cancer 3 years ago. These 2 tablets allow me the priviledge to be here - for my son, my sister,family and friends. I see medication as my second chance to a healthy "normal life". I have no side effects, run marathons, work full -time, play football and enjoy life the best that I can. I feel so lucky that I have the opportunity to be still HERE. My late hubby never got that chance - and I feel I owe it to him and all those other millions of people who never had a fighting chance; to embrace my medication.
Deal with your fears, anxieties of starting meds. If you need to cry about it - go ahead and cry it out. Its ok to be scared - coz its the fear of the unknown. Know that you did all you could to keep your CD4 up but now its time to have a bit of help.

Good luck- and I promise you will be OK!!!! Let us know how you got on xxxx

Hugsxxxx

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Slieh's picture

I say continue with the treatment I also discovered when I was pregnant with my last son 3 years ago unfortunately he left me and I got myself on treatment but the nerve wrecking thing about that is having to take all the kids for tests to see if they were clear of HIV and when I got the results the doctors rooms walls almost collapsed because I just shouted Glory be to God for saving and not allowing my kids to suffer for my poor judgement in character ( in my ex husband )

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Lynn2011's picture

Thanks for sharing this, and good luck. I was diagnosed when I was pregnant, so I was put on medication immediately. My Dr. then recommended I stay on medication which I have done, although switched to one that was a little easier to take than the meds recommended for pregnant woman. I have had minor side effects of digestiev troubles and intense dreams, but I have also been very healthy overall. I know we are all different and our bodies are all different. Do what is right for YOU! Good luck and keep us updated.

Peace-
Lynn

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Teresa's picture

My dearest sister in the struggle we all have to face stigma in the face of HIV/AIDS. It how we deal with it that truly counts and build support as we move forward in our lives. I remember when I had to start taking meds 16 years ago and I thought that I would not be able to do it but I did it, so that I could stay health and alive for myself and my only son and grandchildren. Back when I started my HIV medication it was so many pills three times a day but today because activism and other FIGHTING for new meds and new research today I am only taking one pill a day.

Hang in there my sister in the struggle and build support as you move forward. get involved with a network of HIV positive women like a girl like me or Positive Women Network here is the link http://www.pwn-usa.org

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Dona's picture

I too struggled with getting on the medication. Like you, I felt a sense of pride that I did not need to take the meds...and then I started getting tired. So tired. I don't get tired.
The first time I took Atripla, I felt immediate relief. My body sighed and I definatly felt the fatigue lift...Now, I am undetectable and being undetectable has it's own sense of pride and gratification!
;)
Cheers to you!

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Pearl's picture

My dear i am 1 month on treatment it was difficult it took me a whole year to accept that i needed them and am glad i did and am feeling great and cant wait to for my review in May to see what happens. i therefore encourage you to take the step once you have decided and commited. im with u my dear ive cried and all alone and not even one member of my family knows but i and only i decided that i will do it to live longer and see my children grow. fortunately i havent been sick and never had a side effects when i started treatment and guess what am FAT!!!!!!!!!!!!! So go for it you wont regret it. It only being a month but taking my pill a day has been come routine

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acw's picture

Even though my VL was very low, I had to start taking medication a month after I was diagnosed because my CD-4 count was also very low--My partner died shortly thereafter...I remember that my PCP told me, before we knew how low my CD-4 count was, was that the initial goal of treatment was to keep me off medication for as long as possible--and I had then a sense that illness equals medication. But the truth is, I am healthier now than I was for the 3 or 4 years that I was infected but didn't know it, my energy level is hugely increased, and I am SO thankful that I have access to medication that can keep me alive and healthy. The thing about taking pills is that it makes you feel more like you are sick...before that, you may be infected, but you don't feel as vulnerable. But it passes. It took a more than a year for my numbers to significantly improve, but now I laugh because I realize that for the first time in almost 5 years I am healthy enough to have trouble sleeping again!! The pills are a gift, but I am sorry you couldn't be healthy forever without them, there is a loss of the illusion that one is healthy and just like everybody else...

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DARAMOLA TOSIN's picture

hun.... what a hell.
i,m not yet on medication too, so does it mean i'm going to go on medication some day??????????????????????????????????????????????????????????????????

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Dona's picture

Daramola...that will be something to discuss with your Dr.... Everyone's body is different...make sure you are having your labs done...that is the best way to be confident in whether you take meds, or choose not to!!!
Be safe! ;)

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Pearl's picture

am almost two months on med and feeling great however i have genital warts and they dont seem to go away, my gyno told that with time they will go away when my cd4 count goes up and viral goes down is that possible or will i have to have them for life and face the embarrasement of of opening my cc each time i visit the gyno? Gosh Hiv burden is just enough on its own and dont need anything else sooooooooo embarrasing!!!!!!!

I have seen one benefit of being on med......... i used to feel tired everyday even in the mornings but now its in the past and i wonder if these warts will be in the past as well.......... stressed...... and know its not gud for my health.........ENCOURAGEMENT PLEASEEEEEEEE!!!!!

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