An important day..

[Wallysma]

This might be strange but it is important I think. Here's why I wanted to share this with my PMRTribe:Back in the mid to late 80's I got pretty sick with extreme fatigue, headaches, night sweats, brain fog, light sensitivity, insomnia, gastrointestinal problems. I was diagnosed with 3 different viruses, given all sorts of meds and had to figure out how to work in my very busy all consuming job at a non-profit. As time went by and AIDS came to the forefront I realized symptom-wise these young gay men were left to live with a similar set of symptoms. I am talking about the day-to-day. Some friends were diagnosed. They were stuck trying to figure out how to live. How to keep working. How to get to doc appointments. How to deal with families. How to deal with being fired. How to deal with ignorant people who didn't understand AIDS. When they were home sick with zero energy how would they eat? But the one thing that happened that changed my life was....how would they be buried. Yes...you read that right. There was a real problem in the DC area in trying to find funeral homes who would handle the rains. All refused. Finally one funeral home in local Maryland stepped up. I was astonished. Everywhere they turned was a lack of help because they were young and working....not set up for something like HIV. And a lot of their friends were in the same boat. I could relate to a lot of their daily experiences. I didn't have the same level of illness...I had.chronic fatigue syndrome. But I empathize with what they faced each day.

Because of these experiences I got involved in a local gay men's health clinic that worked with volunteers and other organizations to create a continuum of care to help people living with HIV/AIDS. So someone could go to the clinic for meds and also talk to a social worker and get help with housing, transportation, legal help, groceries, and an assigned buddy. I was a buddy and then a buddy team leader. Buddies provided emotional support, help around the house, outings, trips to doctors, anything the individual needed and the buddy could.and wanted to do. After a few years other organizations and clinic programs grew out from the need. Food & Friends prepared and delivered 3 dietitian supervised meals per day to clients in their home. An HIV testing program was created where people in the community could come in for blood tests and return a week later for the test results. Testing was done through a number identification system at no charge. Negative and positive results were only provided by a trained counselor. I was a certified counselor...it was a great system that easily allowed people to come in for testing without involving their insurance and if positive get on the AIDS drugs as soon as possible. Eventually I became the development director for Food & Friends the best way I could serve my community and earn a living. It was more than a job for all of us.psid staff and volunteers alike.

The other side of this experience was the great loss of so many wonderful people. I lost friends, fellow volunteers, clients. I planned and attended 20 plus funerals. Everytime I would go to one I felt like there was a group of people behind me. It was hard especially being so young, and amazing at the same time. Each life was celebrated by a group of people pulling together and holding each other up. Many of those people are still friends today.

The reason I wanted to raise this today was obviously to honor those who have died of AIDS and to honor those living with.HIV/AIDS. But I wanted to honor that community of care that was created by people seeing their friends struggling with basic daily activities on top of pain, fatigue and eventually difficult diagnoses . I feel that is what we have here. I don't come here for groceries of course but I come to this place for information, treatment advice and experience, and lots of love and care. Support as I try to figure this bleedin' disease out, best practices, fist bumps when things go well and big hugs when they don't. Explanations of the unexplainable. Fact when I'm spouting fiction. Love...just because. This is our continuum of care. This is one disease that requires it. I am so glad that I found this place and all of you. I have lived with autoimmune diseases for 35 plus years but this is my first base of support and information. And when I came I was desperate. Lost. Scared. Confused. Worried. Exhausted and in severe pain. You all made this much easier.

So in honor of World AIDS Day thank you for the care you have given to me. We are here to support each other regardless of where we are in the continuum of PMR or GCA. Everyone regardless of knowledge can participate and get and receive help.

Please take care of yourselves. Thank you for reading this. Please take a minute to think of those you know who.have died from or are living with the challenges of HIV/AIDS.

❤️

[Highlandtiger]

A very thoughtful post thank you.

There has been quite a lot of publicity for World AIDS day here in the UK and a lot of our politicians (with some prominent exceptions) have been wearing the red ribbon.

I heard someone on Radio Scotland today talking about being diagnosed with HIV and being told the bad news was he had HIV but the good news was with the newly available medication he was likely to exceed the normal life expectancy in Glasgow. He had appreciated the dark humour and said it kept him going.

I remember the horror of the 1980s and how HIV/AIDS sufferers were treated then (remember the tombstone TV adverts anyone?). Well done for providing support then and I’m glad that in turn you’re now benefiting from the support from this wonderful forum.

[Wallysma in reply to Highlandtiger]

Thank you for your reply. It is an important time. I am so glad it's being focused on over there. It's a day for red ribbon and red lights but not enough.focus here....my personal opinion. It's funny you just reminded me of a friend of mine who was an AIDS doc. He was living a lot of weight and decided to move to Florida to live out his days.....he's still here!! This was tears and years ago. He came back to DC and opened a new practice and started lifting weights etc. He was beautiful...all muscles. His practice was really successful. I actually.went to him after seeing 5 different docs trying to find out what was going on....I walked into his office and within minutes he explained I had fibromyalgia. He was my doctor for years. I heard he retired during covid and might be headed to Florida again. What a trip. He took care of so many of our friends. I think he was a gift from God to so many which is why.he survived when he shouldn't have. I am so.glad I.found this place and these.people....it is wonderful to benefit from people coming together to learn and help and support and care for each other. To get us through this.sometimes horrible and lonely experience. I try to check the site every morning with my coffee....a great way to start the day.

Take good care.

[SheffieldJane]

A very moving post Wallysma. ♥️

[Wallysma in reply to SheffieldJane]

Thank you. It's so hard to believe it's been so long.....and now people live with HIV as a chronic disease. But too many people live in poor countries without access. But really my focus was how lucky I am that this forum was created to.help so many and that as we struggle we can still give. But I feel very cared for here....it's very emotional for me sometimes. I have gratitude.

[123-go]

Thank goodness there are people like you in the world, Wallysma. ❤️

[Wallysma in reply to 123-go]

No it's less about that and more about people like you.....thank you for your help these past months. I get scared when I think about if I had not found this place. Be well.

[Sukydee]

Thank you for your thought provoking and moving post. Unlike you, I am a newbie when it comes to autoimmune conditions and have so many questions and things to learn. I am so glad that I found this site and grateful to all those who contribute to the knowledge bank and patiently answer our questions. Without you I would still be stumbling around in the fog with no idea where I was headed. Your post is a testimony to the power of community and the fact that we really do need someone to lean on - we can’t do this on our own. Thank you one and all. God bless you in your journeys.

[Wallysma in reply to Sukydee]

EXACTLY!!! Be well. And here I have found newbie or not you have things to offer. PMRpro taught me that.

[Judyliz]

Thank you, you have written and shared a post that is about so much more than AIDS.I shall hold on to your sentiments throughout my day.

[Wallysma in reply to Judyliz]

Thanks. Be well.

[DakotaMae]

What a wonderful post that also sums up my feelings for this forum. Thank you for sharing your thoughts. My husband and I worked at Nyumbani in Africa once, a home for HIV+ orphans. We became so close to those children. The graveyard in the back of the complex had continually become more vacant as the medicines improved. It was very emotional. Your post has given me a new perspective of adults living with HIV/AIDS. Thanks again for such a beautiful message.

[Wallysma in reply to DakotaMae]

Thank you. I just am grateful to be a part of this forum. It shows how we all can help one another...and should where we can. I feel like the PWAs I was a buddy to....living in chaos and a group of people came along and did simple things that made such a difference. This group of people gave me information to take care of myself. It scares me to think of not learning about the pred and dosing where I would be. It's wonderful that you and your husband worked in Africa. I can imagine the heartache but also the joy. Being a part of the epidemic changed my life. I am grateful to those living with.HIV/AIDS for sharing so much of themselves. And boy, I miss so many. A great loss for the rest of us.

Thanks for sharing your experience.

Be well.

[whitefishbay]

Oh you made me get all choked up. You reminded me of my favourite cousin William (died 4 years ago) who lived his best life with HIV/AIDS. Thanks for this and thanks to everyone on HU for PMR. Always start the day reading HU. x

[Wallysma in reply to whitefishbay]

Oh I am sorry about William losing his battle with HIV. It is heartening to hear he lived his best life. I think when I think back, the thing I wish I could have done for my friends was to wave a wand to rid them of their experience of stupidity and prejudice. HIV/AIDS is enough without the insanity those early years brought. So much has changed. Thank you for sharing about William. I am so glad we.have this forum and each other.

Take care and be well.