Tag: HIV medication

Me and my meds

Me and my meds

hivstigmafighter

Travelling is always exciting until you remember what has to be done before leaving your home!

My lovely people, in your life there are always moments you need to travel from your home, whether this is for family visits, holidays or work related. We are all travellers.

We do not leave our medical conditions at home, we are traveling together, and so is our medication. So, when you know your travel dates, what is the first thing that comes to your mind? Is it the excitement of packing your bag, check your outfits, mesmerising over the things to do when you arrive?

My first thing is to check if I have all my medication, and here comes the hardship. When you take only 1 pill a day it is easy to count what you need. But imagine when you live with co-mobidities and you have 4, 5 or more medications to prepare? And if you will be gone for a month or longer?

This is not easy, but it is my reality. I do this many times a year, so I developed a certain routine, especially when I go for a longer period. First of all, I always make sure to memorise the looks, shapes and colours of my meds, I even know the size and colors of the packages. That way I know what I take and what I need for my travel. And I am blessed for not taking so many pills anymore since my Healthy new Me lifestyle. Then, once I know that I will be traveling, I will call my pharmacy well in advance and ask them to provide me with a stock of at least 3 months of meds.

Here in the Netherlands, a few days later I will get an email that my meds are ready for pick-up. Then I will go as soon possible to pick them up and do a very careful check at home. Because, although they said everything is ready, my experience has taught me that they sometimes substitute med for another med with maybe the same function but from another brand and composition.

Unfortunately, many times I need to go back to the pharmacy to sort out what happened. And often I get the same response, that a certain type of pill is not available and that it will take a very long time to deliver and that they decided for me to take an alternative.

To be honest with the pharmacy, I cannot even blame them too much because they are actually instructed by insurance companies to prescribe alternatives because the insurers refuse to pay for certain brands as they are more expensive. But the thing is the pharmacy doesn’t inform me about this change beforehand. And I tell you, this changing of meds without informing me has already gotten me in trouble a couple of times as some of the alternative meds gave me all sorts of allergic reactions!

So today I am preparing my journey, and again I realize that meds are missing. I finished to check in with them just now, only to hear that it is not available and it will take many weeks to be delivered. As usual they proposed an altenative, but luckily I already know I am allergic to these meds and was pretty sick for a few weeks when I took it the first time a few years ago. So I totally panicked because I must take this medication to regulate my blood pressure. The pharmacy now did their search and came up with an alternative. As it literally takes weeks I now must take this new meds and I can only hope there will not be any serious reactions while I am travelling!

It does worry me sometimes how often I need to stand between the pharmacy, health insurers and my healthcare providers, to make sure they make the right decisions around my medication. Memorising names and apperance of medication and counting doses can be a pain in ass when you are doing it a lot, and there might come a day that I can’t do it anymore. What will happen then? I am sure I will find a solution. Time alone will tell and with my positive spirit nothing is impossible!

Being an avid traveller, I do have extra exercice and motivation to stay adherent and loyal to my medication. Otherwise, how can I enjoy holidays or work abroad when I am not healthy?

My dear person dealing with double trouble (or even more) morbidities, don’t think of winding down or discoving new places before dealing with the pharmacy and insurers for your med. Prepare them well in advance, don’t forget to take your medical passport and make sure to check the time zone of the country you are visiting to adjust your medication schedule.

Those are things I always checks before I start my travel.

Me and and my meds are inseparable!

Peace,

Eliane

FIVE ways to THRIVE

FIVE ways to THRIVE

hivstigmafighter

This month I had the opportunity to participate in the ‘Stories from HIV Long-Term Thrivers’ forum where I gave a spoken word performance alongside an amazing and inspiring panel. The forum was organized by ViiV healthcare.

How did I give this spoken word performance? I decided to share my 5 ways to thrive! Even today, to many people HIV is still seen as a disease to be ashamed of, they consider it as a big challenge while actually you can live a perfectly happy and healthy life. Here are my 5 ways to thrive for those who missed my performance:

Trust (again)

In 2003, when a doctor told me to buy my coffin when I was diagnosed with HIV and sent me away desperate, without a prescription, I spent  a few hours thinking only about my death. I lost all confidence to live. Instead of looking for help, I started preparing my funeral. Hope started glowing when my husband brought me to another hospital for sound advice and to get my HIV treatment started. When I held my first pills in my hand, I rejoiced in taking them because I firmly believed they were going to save my life. Only after regaining trust in myself, I was able to work on my next step…

Move (my body)

My new reality made me even more aware of the importance to keep myself in shape and healthy. But what what get me going? In 2003, I wore a beautiful sky blue wedding dress and I set myself as a goal to wear it again at my 20th wedding anniversary next year. So, I decided to walk at least 10 km every day to keep me in shape and make sure for me wedding dress to fit me again. Another really important driver was for me to reduce the number of pills I am taking as I also need to take care of my diabetes. So as a huge added benefit of my daily walks I was also able to reduce 4 pills. And my weight? Well, I lost 8 kg so far, just a tiny bit to go. I like my healthy new me!

Share (my emotions)

You all know by now that I came out of the closet with a big bang! As a campaign poster girl, with my message posted all over Amsterdam. After staying with my secret for more than 10 years, sharing my story with the world was a huge relief for me and made me even stronger and more courageous. It was also a great motivator to help more people in the HIV community, for example by peer counselling and support people living with HIV on emotional well being. It also motivated me to learn ever more about HIV, related stigma and existing inequalities in the world. Last but not least, I also launched an initiative called Stories of Hope to show the diversity and talents of the HIV community worldwide.

Perform (my arts)

My greatest passion has always been to be on the stage. Since very early on in my life, I liked entertaining people. And I do so in many different ways, as a poet, through traditional Burundian dance or playing my indonongo… While I am lucky to consider my passion as my job, my key message to all of you is to work out routines, find hobbies or simply try to enjoy your job and all other great things in life. Creating and maintaining a diverse lifestyle is probably really my biggest secret to staying healthy. So, despite having gone through so much in my life, I am confidently looking forward to growing old.

Dream (my desires)

Unfortunately, in Africa people living with HIV/ AIDS are still dying. My nephew Kevin lost both his parents because of AIDS within 8 days in the year 2015. During the forum I shared my wish for a world where children like Kevin will not lose their parents anymore, where they can access health services so they can get tested and treated, and where they can grow old in good health. And right now, for Kevin I wish he can be supported to grow up in a community where he will not be stigmatised.

Yes it is possible to thrive whilst living with HIV. I, and many others in the HIV community, am an example of that. I am always proud to share my little secrets to growing old while enjoying my life with HIV! 

Inyambo STARS on WAD2021

Inyambo STARS on WAD2021

hivstigmafighter

On Saturday 4 December 2021, I helped Inyambo STARS to organise a local event to celebrate World AIDS Day. This was a day to show their community why they are true talents, showing their fashion skills AND committed to helping their community, especially supporting vulnerable people living with HIV in Gihanga, Burundi.

Inyambo STARS, RBP+ ( Reseau Burundais des Personnes vivant avec le VIH) with indonongo.org support, organised a total of three activities. And as large gatherings were not allowed due to the COVID-19 pandemic, they really had to show their improvisation skills this time around!

The day started with a great Burundian tradition called Ibikorwa Rusangi, community work. All over the country, every Saturday morning from 8h00 the people of Burundi contribute collectively to keeping our community healthy and promoting good cross-cultural relations. They were joined by their parents, local representatives, shopkeepers and other community members.

Really, there is no way Inyambo STARS can perform their arts without maintaining good relations and giving back to their community. I know this gave them a lot of inspiration to stay connected and work together as one. What a great opportunity to connect the community of Gihanga to fighting HIV stigma in our country.

After Ibikorwa Rusangi, Inyambo STARS, a selection of people living with HIV and partners, marched together through Gihanga in solidarity with people living with HIV and to raise awareness on this year’s World AIDS Day theme: “End AIDS, end inequalities , end pandemics”. Did you know that in Gihanga there are 246 people living with HIV, 84 men and 162 women? Of them 29 are younger than 29 years, of which 8 boys and 21 girls.

Yes, normally Inyambo STARS would now have done a fashion show or catwalk, but I do believe this March together with people living with HIV did really help them to unify with the HIV community.

They closed the day by expressing solidarity and support to vulnerable people living with HIV. The cordinator of RBP+ reinforced the message to the community of the importance of staying on medication and going to the health centre for regular check-ups. She also called upon pregnant women to do a HIV test so they can detect any new HIV cases to prevent neonatal HIV.

Helping Inyanmbo STARS and their partners to support people living with HIV in Gihanga during World AIDS Day, inspires me a lot and gives me so much positive energy to continue making impact in my community of Gihanga and possibly in the whole of Burundi.

Peace, Eliane

A big applause to the real STARS of the day!

18 years in 18 moments

hivstigmafighter

This week I ‘hacked’ the #hiv2020online instagram account for 24 hours. I decided to share my 18 years journey of living with HIV in 18 posts on their storyline. Here you see 2 of them and soon you will see more.

Using the power of Instagram, I shared 18 pictures of moments that meant a lot to me. Pictures are very powerful: They keep our memories intact, they are reminders of what happened, and they can trigger emotions. But most importantly they tell me why I must keep fighting HIV stigma.

So telling my 18 years HIV journey via Instagram storyline was a challenge as I relived sadness, but also joy and empowerment in my fight against HIV Stigma.

Now that I have 18 defining pictures of my life with HIV so far, I see more clearly that my efforts have not been in vain! I rediscovered my Joy and my Talents in life, and my dream for my next 18 years with HIV is to realise a World free from HIV stigma and AIDS deaths -related. It is possible!

Let’s fight together with Love and compassion!

Peace,

Eliane

HIV medication exchange

hivstigmafighter

I would like to share an article (in Dutch) published on 9 Jaunary in the magazine Hello Gorgeous. It is about a topic that I am really passionate about: Ensuring that unused HIV medication, still in its original packaging and meant to be destroyed here in the Netherlands, reaches people with HIV in places where there is still no access to life-saving medication. In the text below you will find the translated text in English:

Ready to be sent to people without HIV medication in Romania

Hello Gorgeous: “How did you get this idea to collect HIV medication for Romania?” Eliane: “Last year I met a Romanian woman during a meeting of the European AIDS Treatment Group in Brussels. She was looking for people who wanted to donate their HIV medication to pregnant women with HIV. We became friends on Facebook and kept in touch. When she told me that these women are regularly without HIV medication, I was heart-broken. Without HIV medication they risk their children being born with HIV. I don’t understand this is still possible in Europe. “

Hello Gorgeous: “What are you doing to tackle this?” Eliane: “I am continuously asking people in my network, via messages and emails, if they have any medication left. Often, this happens when people switch medication, then they are left with unused medication. I collect this, compare it with a list I get from my contact in Romania, and then I send the required medication to Romania. It hurts me, to see we are so committed to climate action, for example by recycling, but that we are still throwing away perfect medication which can save lives elsewhere. This only happens because our rules are such that medication prescribed for one person cannot be transferred to someone else.”

Hello Gorgeous: “Have you also approached pharmacies to help you?”. Eliane: “Certainly, I talked to a number of pharmacists here in Amersfoort. They told me that they used to collect medication in the past but that this ended when health authorities required them to stop this. I always tell them to give it to me secretly. It is so difficult to accept that unused medication is destroyed while we can find a purpose for it. Meanwhile, we still worry about someone dying every 40 seconds of the effects of AIDS due to a lack of access to medication.”

Hello Gorgeous: “What can people do if they want to send you their unused HIV medication?” Eliane: “If people switch their HIV medication and still have unused supplies at home, they can contact me. Send me a message via hivstigmafighter@gmail.com and you will hear from me.”

This message gives me courage to continue HIV medication exchange

Hello Gorgeous, thank you so much for publishing this article. Already I have been approached by people, asking me how to send their left-over medication to me. Many people living with HIV in Romania will forever be grateful to you.

I really hope to expand this project in 2020, so more people with HIV in Romania or elsewhere in this world can continue using life-saving HIV medication even.

Peace, Eliane

Be my messenger

hivstigmafighter

Dear Santa,

I wanted to ask you a favour for this Christmas season. As a woman living with HIV for 17 years I am grateful to live. I look at the future positively. Only sometimes I fall back when I experience stigma with health care providers or when I hear that in some places pregnant women have no access to HIV medication for themselves and their yet to be born children.

It hurts to hear that in so many places there are still pregnant women who do not have access to life saving medication. We should no longer have children born with HIV. So last week when I organized a Meet & Greet at the pink statue of the Crying Woman here in Amersfoort, my purpose was to get an impression how people were touched by the message behind the statue and to hear their thoughts on issues such as access to medication for all, especially pregnant women.

The understanding of the people I met and their support for the issues I raised, especially fighting for universal HIV medication access for pregnant women, was overwhelming. So I asked people to help spread my messages. Some even wrote and shared their own messages:

I am very grateful for the support I received that day. It shows that people finally understand how hard it is to live without having access to medication and fear that your baby risks to be born with a preventable condition.

The Meet & Greet gave me a lot of courage to keep fighting in 2020. Dear Santa, when you give presents tonight, I want to ask you to include these messages to everyone .I know you can reach so many people in one night, including the decision-makers. Let’s see the positive change in 2020.

I wish everyone a merry Christmas and am positively looking forward to 2020.

Peace,

Eliane.