I Joined A Blood Sorority

I've been wanting to write this and also not. With all the events in the world, in my family, it feels superfluous and needy. And yet, blah blah blah here it goes. 

I was diagnosed with Thalassemia pretty much from the moment I was born. They showed me to my Mom, put me in an ambulance, drove me to another hospital, gave me a bunch of blood transfusions, and kept me in an isolette for a week. Having Thalassemia means you are generally low in hemoglobin and constantly anemic. It's a microcytic anemia which differs from iron deficient anemia. My hemoglobin is small and malformed, it breaks down early and can't carry the iron, which can lead to iron overload. Hence a spleen that works overtime to filter out all that extra stuff the hemoglobin doesn't carry. 

I can remember the first time my hemoglobin reached 10. I had been wearing a heart monitor for a month and we were waiting for test results. The doctor called us at home (this was the 80s) and my hemoglobin was 10! Exciting! The big celebration was going out to see "Brigadoon" at our local community theatre. I can remember sitting in my seat and thinking about finally being at that elusive 10. 

For pretty much my whole life doctors would say I had Beta Thalassemia, but there were always caveats. I had Alpha traits but not enough for transfusions, Minor traits but too many symptoms to keep me in that category. One doctor decided it was Thalassemia Intermedia and that seemed to answer most of the questions. 

Then came the issue of my spleen. I've always had an enlarged spleen. Which many people have with Alpha, but not as many have it with Beta. As I got older and more diagnoses added to the pile, the spleen pain and size increased and I had a hematologist that was very intent on removing it. Which, I do not want. Which my Immunologist does not want either. 

Then came the second opinion, with a new hematologist, and a slew of genetic tests. That's when I got the MyChart message of "You have the very rare form of Thalassemia called Epsilon Gamma Delta Beta Thalassemia." Basically all the Beta-Globin genes are deleted on my 11th chromosome. It causes severe neonatal anemia and most babies born with it didn't and don't survive. By taking me to another hospital and giving me those transfusions, those doctors saved my life. 

There are maybe forty documented cases of Epsilon Gamma Delta Beta Thalassemia on the planet. 

Adding this adjusted diagnosis to my already impressive heap of malarkey, there's hEDS, Hypogamoglobulinemia, CRPS, MCAS, Dysphagia, and POTS, I am literally and figuratively unquantifiable. One in a trillion. When I gave the news to my Primary Practitioner he said "You are even more special than we thought." 

My Mom always said I was special. 

Just Too Good To Be True

Here are some fun things that happened during our Costco shop today - 

A Mom walking by the fresh flowers asked her son if they needed some fresh flowers, he hesitated like *why would you even ask me that?* I pitch in "You always need fresh flowers!" She turns around, raises both arms in the air and hollers "RIGHT?!" 

They've moved the chips, the beer, and a bunch of snacks. I had to ask a nice workerman where the beer was and he gave me the deets. I told my Mom "see, you're not crazy." The workerman said "Oh no, you're not crazy. We're crazy." 

Going up to the check-out my Mom zoomed the driving cart around the corner and the checker yelled with high fun drama "AGGH! Don't scare me like that!" I assured her that Mom didn't even hit me once. It was twice. There was a pause. Then BAHAHA. 

Mom loves to get a Costco hotdog on our way out of the store. So there I was, filling our lemonades at the drink stations, and next to me was a younger man filling up his own drink. He was shaking his hips and singing the "bada bada, bada dadada, bada bada, bada dadada" section of Can't Take My Eyes Off of You. Literally, the best thing I've had happen in my presence in months.

Then, when we get up to leave our table, a young man asks if our table is free. I tell him it sure is! Then, I offer him a wipe if he'd like, to use on the table. He was excited, grateful, and accepted. While wiping the table he said "you must have children or grandchildren to have those." Nope, I said. Just me. OCD me. 

Or grandchildren. 🤦🏼‍♀️

Are We Training AI

 Very not hot take: I can't be the only one not excited about posting anymore because it only feels like we're training AI. 

How to be funny? How to empathize? How to have a normal number of fingers? 

Besides my regular daily dose of self sabotage telling me that it's all been said, it's been done, blah blah blah, there's battling the daily upheavals of my body, and then the question of your socials aiding and abetting in the training of AI FemBots to trick incels in their "He-Man Woman Haters" basements sending Bitcoin to GiveSendGo. 

I ain't got time for that. Nor the energy. 

Are we past time for caring? Has every post and every blog I ever wrote just a cog in the big AI machine now? Do we all unplug our social faces and only communicate through texts and messages? Snail mail. The answer is snail mail and books. Probably.

Guess this not very hot take was longer than I anticipated. 

An additional not so mini take, I'd like to think I'm capable of calling out AI videos or writing every time, but no doubt it gets past me. Oh, and yes, I have used the AI search option on Google and Bing while looking up a recent health diagnosis. I've probably shared AI. Hit the love and like buttons. I can't be some innocent AI purist. I think being online at all prevents that. 

The fact is an AI data center that will produce the energy equivalent of 23 atomic bombs every, single, day, is going to be built in my backyard. It is horrifying. 

There's also the incels.

Chronic Newsness

I purposefully avoided the news and all the socials for many days. I'd go in bouts. Sign on for a minute, then runaway. Everything was too much. Too costly. Trying to exist inside this body daily is exhausting enough, adding the apocalypse on top of it is crushing. 

I miss being silly. Ridiculous even. 

I want to scream and cry in rage. I also want to hug everyone and cry from joy that I'm so loved and that I get the privilege to love. 

I might go on another news fast in a day or two. I might inundate your feed with scorn and bitterness.

I also might try to find my glimmers and share them.

Stephie 20

Today marks 20 years since my Stephie left. Twenty years. It's forever ago and just yesterday. I can still hear her last breaths. Feel her tiny hand in mine.

The 20th Anniversary for Hurricane Katrina is at the end of this month. It happened a few days after her funeral. She was buried in a lovely purple casket, because, of course. 💜

After the funeral and during the days of Katrina coverage where I was numb and dumbfounded that the Earth was still spinning, the same thought kept running through my head - "We got the privilege to bury her, a gift so many in Louisiana will never receive."

Twenty years later. Countless personal and worldwide catastrophies piled up and piling. I still think how grateful I am that we got to say our goodbyes in such a loving way.

I'm also thinking a lot about the gift of my continued life. That I survived Cancer, when she didn't. I'm surviving every day with my other disorders. I truly enjoy being alive. Even when it hurts.

I enjoy remembering Stephie. Even though it hurts.

Golden Memories

 When I was between the ages of 8-10 (possibly younger) I would make little books for my dolls. I'd illustrate and color the inside. Before I had my big fancy dollhouse that my Mom commissioned specially for me, I would build dollhouses out of Golden Books. Rooms with doors and second floors. The Golden Book Dollhouse would take up the entire floor of my bedroom. I would leave it up for days since it took so long to build. Then, when it was time, I would meticulously dismantle it. With care. 

I miss that quiet play. The focus of doing nothing else but creating something that was mine only. Even if it was only for a short while.

I still have the books that I made for my dolls.

I still have the memories.