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.
❤️
Not really PMR - although it hasn't done my PMR a lot of good!
An Update
Well that was an interesting day!
Tips for application for PIP and Attendance Allowance
