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A Girl Like Me is moving!

June 29, 2014

Dear friends,

new AGLM_blog_logo_small

It has always been a long-term goal of The Well Project to have all of our online resources in one place, so as to be able to combine information with real world experiences and connections. The technology of our new website has finally allowed us to reach that milestone. Therefore, we have recently migrated the entire A Girl Like Me blog onto The Well Project website and will soon be closing down this blog site and redirecting the www.girllikeme.org URL to the A Girl Like Me section on our website. We have already closed down comments on this blog, but comments can be made on the blogs posted to the website.

Q:        What does this mean for the A Girl Like Me blog?

A:        Ultimately, everything will remain intact. All of the blogs and comments have been transferred to The Well Project’s site, except for a few comments that were posted immediately after the transition. To ensure that we don’t lose any more of your valuable comments, we have closed down comments on this website and ask you to make any comments to blogs on the new website.

Q:        Will I continue to receive email notifications of new blogs?

A:        If you are currently subscribed to this blog and receiving email notifications, this will stop when we close down this blog. In order to receive notifications, please sign up to become a member of The Well Project website if you are not already (a simple process). Then, you can either “follow” individual bloggers (by going to their profile and clicking the “follow” button on their page) to receive email notifications when they have posted a new blog or “follow” the A Girl Like Me group, which will provide you with email notifications for all new blogs posted.

Q:        Why was it important to move the blog?

A:        Having all of our resources in one place will allow our users to have access to both information about HIV (including treatment, side effects, and related issues) and  a community of support through the blogs and other community features, such as groups and forums. For example, if you do a search on “stigma” on our new website, you will find both fact sheets and blogs that relate to HIV stigma. The website also reaches a larger audience (over one million visitors annually), so it will increase the reach of the blogs as well!

We hope that you will find this integration of The Well Project’s comprehensive information on women and HIV (over 120 up-to-date fact sheets!) and the online community support resources as exciting as we do! We believe it will not only strengthen and grow our community, but it will also further fulfill our mission of changing the course of the HIV/AIDS pandemic through a unique and comprehensive focus on women and girls.

Together, we can change the course of the HIV epidemic…one woman at a time.  

—-

Please note, we are disabling comments at this time, as we are moving these blogs over to The Well Project website. You can leave comments for this blog at its new home here.

Domestic Violence/Abuse

July 25, 2014

Jo3“What kind of a mother are you,” screamed a lady, “who can’t even take care of a baby…sleeping all the time…kaamchor (lazy asshole)…keeping a babysitter, cook and maid…you can’t even handle household chores or a husband, not to even speak of mothering a baby.”

“Look, I will pay for your medication as and when I can, or else find a job to help support yourself”, said a man. “I have to spend money on bills, my parents’ treatments, as well as my personal expenses.”

“You need to adhere strictly to your medication, Jyoti”, warned a family doctor. “The way you are taking it, neither on time, nor everyday, can put you at risk. Please give your health the top priority – or else you will succumb to the virus and go into a second line which will then be more expensive than the present one you are taking now.”

All these voices rang in my ears…screaming mother-in-law, irresponsible husband and concerned doctor. I was putting my life at risk. If there was something I had to do, then it was only I who could get things done – instead of depending on others, irrespective of the consequences or the result.

My Viral Load count was not so good with detectable levels and my CD4 count lingered between 300-400. I needed to fight back. I love life, and even if that meant I might lose some part of me, which I might or might not get back, what mattered now was to live. And LIVE I did – though I LOST something in return.

Looking back, I have NO REGRETS. I signed the divorce papers after I found that he was in love with someone else, planning and preparing to get me out of the way so as to marry the girl. Moreover I divorced him because I felt that he found spending money on my medication was of “no value” – I say this because despite the doctor’s repeated advice, he failed to provide me with what I needed the most. And my life was at stake!! I went out in search of a job, that too outstation, leaving my child behind under the care of a babysitter, which resulted in my mother-in-law hating and verbally abusing me and my husband finding this an excuse to call off the marriage completely. No matter how hard I tried to save it, it was beyond repair. Therefore to “gain” my life, I “lost” a home, family and my child.

6 years later:

  • Undetectable Viral Load
  • CD4 count between 600-700
  • Happily re-married to HIV-negative partner who provided a loving home and great in-laws

One thing void in my heart is my child – who is now all grown up – an 8-year-old intelligent boy. I doubt if he even remembers his “real” mother – but when the time comes, I will see him too.

Please note, we are disabling comments at this time, as we are moving these blogs over to The Well Project website. You can leave comments for this blog at its new home here.

It’s All Good In the Hood!

July 22, 2014

MelPaintercroppedIt’s been a while. Lots has happened! And I’m just about to embark on a 3 week working holiday road trip and then a stay at KPS Trebullom so thought it’s time to catch up and share. It’s all good in the hood! In May I got great blood results – CD4 726 VL 457 – and completed another 21 day HIV meditation project with new friends made and great feedback received. I also started dating…yeah that’s kinda why I haven’t written for a while, that and my two daughters’ exams, prom, performances, birthday and boyfriend/girlfriend celebrations and commiserations!

So this is where the unique problems of living with HIV really hit home. With the chance of romance comes the fear around disclosure. I did write a whole blog discussing the pros and cons, when, where, and how, and I asked on the forums. I basically stopped seeing him because I couldn’t face it! That seems a lifetime ago and I can’t find the word document where I originally vented and ranted, which is probably good as it does all seem irrelevant now, but those fears of rejection and being judged were so strong. I haven’t shared my status to many and it hasn’t always been well received. Sometimes initially it seems ok and then cracks reveal themselves. Like a ‘good’ friend who is supportive, but actually I’m not welcome to play with her child; a lover who is ok until a condom breaks and the reality of PrEP proves too difficult; or another response: “Wow, I appreciate you sharing that. I feel closer to you now,” and then they never stay to eat or drink tea in your house again.

Recently though I had a wonderful experience of sharing my status and I took a lot of courage from that. At Bruce Lipton’s talk with ‘alternatives’, a fellow healer was surprised to see me there in the big city. He knew I ran a local meditation group as he gave me advise when I first started, and he began talking about all the wonderful work he was now doing in London and how he used to work nearby with PLWHIV. I said, “Oh, did you know I’m HIV+?” so matter of fact it was brilliant! He physically stepped back, but more out of shock than of fear, and I could see him reevaluating me. The table turned. Now he wanted to know more about what I did and was fascinated! I explained some of how the ‘Biology of Belief’ had helped me, then the lecture continued, and I sat back in my seat with a wonderful feeling of satisfaction for being brave and receiving more than just compassion – it was more like awe!  My disclosure meant that in his eyes I was more than just a woman dabbling in healing techniques. I was living proof that these ‘alternatives’ work!

Anyway, to my now ‘official’ boyfriend BRM, he’s a Bicycle Repair Man, and we met over a puncture! He asked me out for a drink, which after became a date, and then we got kissing. Then it became more dates and more kissing, and then I started to fall for him so I needed to tell him. It’s all about how you frame it, just mention it in casual conversation, find out what he knows first. All wonderful advice, but in the end I went for dropping the bomb. “I have something I need to tell you…”

I couldn’t do it lighthearted because my heart was heavy. No matter how much I told myself, “If he rejects me it’s his loss,” I really wanted him to respond well. I really liked him and although my gut was saying it’s going to be ok, just do it, my mind was on overdrive.  His initial response was, “Are you ill?” and his eyes showed concern not fear. “No, I’m healthy, I’m fine,” I replied, and then started my spiel about slow progressor, natural suppressor and all the science, and then he kissed me! “I don’t need to know all that,” he said. “You’re well and we’re ok. That’s enough. I trust you.”

Wow! So since then when I’ve got some spare time I’ve been sending texts and meeting up. I’ve being proudly shown off, taken out for dinner, and generally been having a great time! I think finally there might be a fairytale ending. Time will tell if he is a true prince, but at the moment he ain’t no frog in my eyes!

Please note, we are disabling comments at this time, as we are moving these blogs over to The Well Project website. You can leave comments for this blog at its new home here.

 

Facing Facebook

July 21, 2014

Kate image Hope TatooAs I was sitting by the pool watching my son and nephew splash and play I saw my phone light up, alerting me to a notice on Facebook.  I opened the notice and read a message that had been posted on my wall.  A Facebook friend whom I had recently friended had posted on my wall that she would be attending an HIV conference near me.

A very benign message in and of itself…but for someone who is not very public about HIV status…I had a moment of panic.  I felt myself blushing and I felt my breathing change.  I went to delete the comment as quickly as possible.  Maybe no one would notice?

But then I stopped.  I thought for a moment…why am I so ashamed?  Why am I so embarrassed?  I’m simply giving in to the stigma.  So I texted my sister for support (she’s my best friend and source of reason).  Luckily my sister was supportive and encouraged me to leave the comment posted on my Facebook wall.

Nothing about the comment said “Hey…you have HIV.”  Yet, I had been terrified of being ‘outed’ to all of my Facebook friends and family.  But stigma did not win this time.  The fear of rejection did not win.   I won…and HIV won.

Simply mentioning HIV brings awareness.  Hopefully, as I become more comfortable in my role as an HIV activist, I will bring more awareness and acceptance to a disease which carries such stigma.

Please note, we are disabling comments at this time, as we are moving these blogs over to The Well Project website. You can leave comments for this blog at its new home here.

Surviving into an unknown age

July 14, 2014

square sologirlWho will teach the nursing home staff that HIV infected elders are not terrible dirty people? Who will teach them, educate them and instill some compassion and kindness into them? How will we be treated as elders in our twilight years? It’s coming, for so many of us who were told we had 6 months to live. Now it’s 25 years later and I am left to wonder, ponder and worry about the people who will tend to our needs as we start losing the ability to tend to them ourselves.

I already lost the opportunity to attend college and get a degree because my college fund was squandered away by its financial guardian when I was declared terminally ill at 18. Now the aging is my top concern. I didn’t think I was going to make it this far.

Will we be put in a separate community? The non positive elders won’t want to share their space with us I am sure, and their family and friends won’t like it either. Why would it be any different when we are old and defenseless? Helplessly dependent on someone else, likely a stranger with minimal training, no different than it is now when we are in the medical community and the doctors and nurses are not properly trained.

Honestly, I have this idea in my head but I have no idea how to make it happen. To save us from dying in shame and discrimination as most of us have lived our lives so far. I would really like to age and die in peace amongst like people and properly trained caretakers. So somehow if we could purchase estates around the country and get to training people now and setting up maintenance trust funds for the facilities then we may have a chance at a peaceful ending to this journey.

The bottom line is: what will happen to me and my HIV sisters that are surviving to our soon to be “Golden” years…when our voices aren’t as loud and strong as they are now, who will speak up on our behalf?

Please note, we are disabling comments at this time, as we are moving these blogs over to The Well Project website. You can leave comments for this blog at its new home here.

Running the Marathon: Adherence

June 29, 2014

Martha Picture StandardIn my next several blogs I would like to explore with you some of the strategies that have worked for me and others in running the HIV marathon.

To do a marathon is not simply a matter of getting up off of the couch, throwing on some shoes and running 26.2 miles. In reality, the actual running of a marathon is the result of months and years of sticking to a physical training regimen of jogging, running, strengthening, stretching and resting. When we consider the daily discipline needed to build up one’s body to be ready to run 26 odd miles, we begin to realize that the event of running of the marathon is just a part of a much larger project of adherence.

Similarly, we would not expect a person to survive HIV/AIDS through sheer will. Of course, before we had effective drug treatments, people tried to do just that, and rarely succeeded. While some managed to improve their health with adherence to specific diets, taking supplements and regular exercise, it was not until the advent of combination Antiretroviral Therapy (cART) in the late 1990s that we had any assurance of an effective outcome. We learned that if we took our medication exactly as prescribed and achieved near perfect adherence, our viral load would become undetectable and our CD4 count would rise. However, if we missed or skipped doses, we ran the risk of our HIV developing resistance to our medications, potentially leaving us worse off than we were before! While cART is the most powerful tool we have to maintain our health it also requires of us greater adherence than is expected of a marathoner-in-training. After all, they can occasionally skip training or a protein shake and still meet their end goal of running a marathon but those of us on cART must learn to adhere to taking our medication exactly as prescribed at the right time, every time, every day, every month, every year until there is a cure. When we think about adherence in this way, we can become completely overwhelmed!

I find it simpler then to think of adherence as a part of an overall training regimen for good health that must be done every day. When I just concentrate on taking my meds on time each day as a goal, I find it easier to remain adherent to my cART. Anyone who is starting cART needs to identify their own barriers to adherence, as well as strategies for overcoming them. It is also important to identify personal strengths, experience or skills that can assist us in remaining adherent.

For example, prior to my diagnosis I was already in the habit of taking daily medication for a thyroid condition, so adding cART to that regimen was a relatively simple adjustment. In addition, when I was a child, my mother regularly gave me vitamin and mineral supplement pills, so I was already an accomplished pill swallower! I also followed daily disciplines of prayer and meditation, so I learned to think of taking cART each day as one more discipline of self-care. Finally, because I had studied HIV/AIDS as a researcher, I understood exactly how cART worked and how easily HIV could mutate and become resistant to it if I missed doses. This knowledge was perhaps my greatest motivator for remaining adherent and for addressing my biggest barrier to taking cART correctly: my absent-mindedness.

Yes, I fit every stereotype of the absent-minded professor, focusing so intently on the thing in front of me that time, deadlines, and all other matters fall out of my head. While this is great for doing mental work, it threatens routine yet important matters, like ingesting life-saving pills. Therefore, I use a weekly pill box which I set out next to my desk at home so that I will have a visual reminder to take my pills.

I also depend on my wife, Lisa, to remind me. When I go to work I carry an extra dose of pills with me in my briefcase so that I always have one with me. When I travel I am careful to use travel pillboxes, depend on Lisa’s loving and more persistent reminders, and occasionally use an alarm on my cellphone.

Despite my best efforts, I occasionally take a dose several hours late. Once or twice a year, I even miss a dose. However, I have never developed resistance to my medications and am committed to cART adherence as a part of my self-care training regimen every day, every month, and every year until there is a cure.

I would love to hear from all of you in the comments section below on how you remain adherent to cART. What personal strengths and experiences assist you in taking your medications? What barriers have you encountered and how have you overcome them? What are the current challenges you face? What keeps you committed to staying on your meds, in the race, and ready to cross the finish line?

Please note, we are disabling comments at this time, as we are moving these blogs over to The Well Project website. You can leave comments for this blog at its new home here.

Celebrating a Loss of 100 Pounds

June 23, 2014

Kate image Hope Tatoo appFor those of you that follow my blog, you know I had weight loss surgery in November 2013. Since that time, I’ve lost 102 pounds! My initial goal was to lose 100 pounds. Since reaching that, I’ve made a new goal of losing 120 pounds.

To give you an idea of my weight loss, I’m going to share some personal information…my weight and sizes…but I think it helps you understand. I was a size 24 and/or a 3X. I am now a size 10 and/or a Large. I went from 246 pounds down to 144 pounds. Now keep in mind, I’m only 5 feet tall, so I’m still carrying some extra weight (which is I why I revised my goal weight).

It’s strange though that my body image has not caught up with my body. I still ‘see’ myself as ‘fat’ and critique my body just as much as I did 100 pounds ago. I simply don’t ‘see’ the image in the mirror…my body image seems distorted. I even still gravitate toward baggy clothes. So much so, that my husband suggested I take someone shopping with me to help!

The one difference I notice is how I different feel. I haven’t felt this way in years…I wake up feeling refreshed. I come home after working a full day and I still have energy. Honestly…it’s a wonderful feeling! I can assure you the way I feel makes everything I’ve gone through worth it!

To congratulate myself on losing 100 pounds, I ordered several new pieces of jewelry and a fitbit (yep – the device that tracks calories burned and steps taken, etc…remember I have another 18 pounds I want to lose…plus I realize this is a lifelong change. I will always need to watch what I eat and include activity in my lifestyle.

Please note, we are disabling comments at this time, as we are moving these blogs over to The Well Project website. You can leave comments for this blog at its new home here.