|Thank you to all the advocates for ME/CFS
I play this song a lot. Over and over often while at the doctor getting a treatment especially if it isn't going well. My UV Blood Treatment infused with oxygen is quite simple. Blood is taken out goes into a glass container as if you were giving blood then after it's collected the clamp is released and it goes through a micro filter, then UV light all while being infused with oxygen or ozone. It's simple but tricky because those of us with this illness have low blood volume, blood with infection is often think or you are dehydrated, heparin is added to prevent clotting. On good days it can be think about 20 plus minutes. On bad days almost an hour…with often the vein deciding it doesn't want to take this blood in, so then there is a rush to find a new vein that will take it and if not then this was all for not. I use to get really scared when this happened. Not so much anymore, I know to close my eyes move my arm often in uncomfortable positions and my doctor is quite cool under pressure.
So Streets of Philadelphia. I play it because one it's oddly soothing. It reminds me of the people that have suffered much worse before me. Having an illness that they had to fight for funding, fight for treatment, and fight for dignity. Top that off people were scared of them. And the end result in the beginning was certain death. We lost a friend to AIDS. He had worked for my dad throughout the years. He was a talented decorator, and my parents took him under their wing when all was collapsing in his late teens early twenties; pre AIDS. Just that early pre mid life what am I going to do with my life 20 year angst. The saddest part was that years later he was so happy, in a committed relationship with a kind, caring doctor. They had a beautiful home and garden close to where I live now. I drive or ride past that house most days I leave my own. In the weeks before he passed his partner had a group of close friends over, I think I was in my early 20's. Todd was up in the bedroom too weak to come down so people went up for a few minutes to say their hellos which we all knew were goodbyes.
I was really healthy at the time. Never did it cross my mind I would fall into an unknown illness, that has stigma, a different one but stigma none the less. I've decided to try the main drug that is part of the Stanford protocol Valcyte. Of course this princess can't seem to find a drug or treatment that isn't insanely expensive, fancy even in my illness (sarcasm). What is interesting about Valcyte is that it was first used for AIDS patients to combat CMV (cytomegalovirus). To be honest I was very surprised my Naturopathic Doctor is so on board. I'm a bit concerned about side effects, the unknown, but as we discussed if looking at course of this illness after I got sick with recurrent EBV a few years ago I had an acute bout of CMV. I didn't have any signs because I was already ill but when doing a EBV panel we added CMV just to rule out thinking I would have had antibodies, not expecting an acute onset.
I have a bizarre full circle calming feeling about the connection this drug has to AIDS patients. And our community has really looked and studied their community and amazed at what they did to demand an illness not be demonized. So perhaps my connection to Bruce's haunting words I can only hope is a foreshadowing of hope I hadn't seen coming.
I don't often share photos of what my week looks like but decided this post seemed fitting. The following were taking over the course of 10 days and I am very grateful for my friend giving me home IV's when my veins cooperate and help the Blood treatments go better. I am grateful for my doctor constantly being open minded and a rock of support.
This post is dedicated to Todd. You were a joy and are missed but never forgotten. And all those that every day fight for funding and knowledge to help solve this disease. #CanaryinaCoalMine #ForgottenPlague #MEAction….
I was bruised and battered, I couldn't tell what I felt.
I was unrecognizable to myself.
Saw my reflection in a window and didn't know my own face.
Oh brother are you gonna leave me wastin' away
On the streets of Philadelphia.
Ain't no angel gonna greet me.
It's just you and I my friend.
And my clothes don't fit me no more,
A thousand miles
Just to slip this skin.