Patient perspective: Living with HIV

On World AIDS Day, we relate the personal diary experience of an American woman with HIV about what it is like living day-to-day with this diagnosis.

What HIV looks like …

I am a survivor! I have been living with HIV for 18 years, which I contracted from my soon-to-be ex-husband. I am also a seven-year survivor of cervical cancer twice. I am the proud mother of four grown, wonderful children and I also have 15 awesome grandbabies – they are the loves of my life.

Before I was a survivor…

This week I was released from the hospital after being in there for over four weeks; it turns out – after seven months – that I was resistant to two of the medicines in HIV treatment Atripla. I was told I wasn’t going to make it. Spinal meningitis, infection in the blood. Lungs and Herpes complex 1 throughout my abdomen, which led to internal bleeding, five transfusions.

It’s been 15 days since my hospitalisation. Although I want so much to begin doing what I was before, I realise this is going to take time. I’m blessed to be home in my own bed. My doctors were quite taken aback with amazement when I went to visit last Tuesday. They saw how far I had come, and were happy with the decisions they made. The doctors at the university are caring and personal (I like that). So far, so good – just adjusting to all my meds, and the side effects.

My hope for today…

Well today is my first doctor’s appointment in my new town. I am kinda nervous but hoping for the best. The doctor that I had back in New York was so awesome and caring. She spoke to me like a person, not just another patient. I am hoping that this guy is on a human level as well. I just don’t like being treated different because I have HIV. I am still a human being with feelings and I deserve to be treated with respect and dignity…

… I definitely like this doctor – he is so much more caring and he spent time with me talking about all of the issues that are going on with me right now, so that made me feel good.

My new normal…

Today was a great day. I started out somewhat dragging from lack of sleep. I kept tossing and turning with the anxiety of going to the doctor’s today. It went very well, with good news (which I always like!). I lost 4 pounds… Some would say ‘big deal’. Well, to me it IS a big deal, it is a start! My BP [blood pressure] was very good and my HIV numbers are very good, so no need to change my meds (THANK YOU GOD!!). He set me up with an orthopaedic doctor for my shoulder (separated rotor cuff). This has been going on for over a year now. I felt soooo much better after I left his office, like someone took the weight of the world off my shoulders. I am so grateful for the kindness of my new doctor and his staff. They are all awesome people.

My private thoughts…

My life has been nothing but changes since I was last here. I moved back up north. Will be back living on the horse farm in December. My old apartment is rented until then so I am staying with friends until then. I have been having problems with my kidneys not doing their job properly so I have started dialysis. It seems the meds that have been keeping me alive for the past 18 years have taken their toll on my kidneys. On a better note I am able to enjoy all of the beautiful mountains and the horses again.

Life is a funny thing; just when you think you have a grab on things, something comes flying at you out from left field somewhere! Winter is one thing I am NOT looking forward to…winters can be brutal up here…I will just have to hibernate like the bears do!

Like many others…

Wow, it seems like forever since I have scribbled! I have been on a rollercoaster for the past year but life has finally settled down and I am in a good place mentally. So many changes have gone on this past year… a lot of awesome experiences and people. I have no regrets about all of the changes as medically they all have worked out in my favour. I spent all of the holidays with family and friends… some of whom I have not seen in 16 years! We went snowmobiling, sledding, and there were so many catching-up stories. And good food. Now back to reality and trying to get some of that ‘good’ food off!

The reality on World AIDS Day

An HIV or AIDS diagnosis is more than a day. Individuals live with their diagnosis every minute of every day. Finding a way to share something private about your health so you can leverage being social as a way to be healthier, is a daily occurrence on the internet. This story, shared on www.TreatmentDiaries.com, is one example of how privacy breeds transparency. This individual’s story is now a living inspiration for those newly diagnosed or living with HIV and a reminder that they are not alone in their experience.

Related article:

Examining the WHO guidelines on HIV testing services

Read another patient experience diary:

Patient perspective: living with diabetes