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. 

Sun in My Ears

Little girl outside riding her scooter on the sidewalk is going back and forth in front of my window. 

She's singing "E.I.E.I.O" over and over in a loop. 

I can hear her at the end of the sidewalk quietly, all lowercase. Then the closer she gets to my window it's all "e.i.e.IIIIIIII.OOOOOoooo." 

The clacking of the scooter wheels punctuating each letter. 

Glimmers. Always glimmers.

Fo Sho

 Okay, story time: 

The waiter at our go to Shanghai Cafe is a ridiculous flirt and funny.

Last time I was there he caught me doing a check in on my credit card and my big huge balance was on my phone. He asked if I was investing and I just laughed it off and said a hearty NO!

Today, he asked what we were doing for the afternoon after my doctor visit and then lunch. We told him Trader Joe's because they refuse to go North despite all my wonderful advice. Mister Waiterman suggested I just invest in them and then take over the whole company so they do my bidding. 

Then me, being me said "With my name being Heidi, I'd change it to 'Trader Ho's.'"

He thought it was hilarious. 

My Mom, not so much.

Patched

The prospect of doing these Immunoglobulin Infusions for the rest of my life has been, well, a little more than daunting. Having all the STUFF invade my home was the final big push of the reality of it: the pole, the sharps container, a special dresser (albeit cute because, of course) to hold all the syringes, gauze, chucks, tubes, alcohol wipes, and needles and on and on.

I'm still not completely sure of myself when I administer it, on myself. Definitely not proficient yet. I'm lucky to have the best support in my Mom and Jen. My goal is to be the best Self Infuser EVER! I know I'll get there. Even when I fail terribly and the tube gets blocked and I have to replace the needle and poke myself three more times. Frustrating doesn't cover it.

Then there's today. For the first time, in I don't even know how long, I felt, good. 

I did grocery pick up instead of delivery. 

I drove with the windows down and sang. 

The last few days I've had enough energy to cook "REAL" meals. 

What if this actually works?

I've called the meds that I get Liquid Gold, not only because of the price. 

I'm being repaired, Kintsugi style. 

Inside out.

Ask

 My Mom's back is more than pretty awful at the moment. Just getting up to go to the bathroom is a colossal effort. So today, we spent the day in her bed watching HGTV, then writing in a book I bought for her a while ago called "Questions You'll Wish You Asked: A Time Capsule Journal for Mothers and Daughters." We talked, reminisced, and laughed. I cried. 

I clipped her toenails. We all played with Sami. Todd had Sushi delivered for a fun dinner treat. 

I missed her the moment I drove away. 

There are still many more pages to fill out in the book and I'm very much looking forward to them. 

I'm also looking forward to her feeling better.

The One With The Friend In It

The person I thought was my best friend since I was five years old dumped me through a FB message. Cut me out of her's, the husband's, and her five kid's lives that I nannied since they were born.  I had finally stood up to her when I refused to take her warped "The Secret" brained bullshit and believe her new insanity about people in a local shooting that "drew the bullets and the shooter" to them with their negativity.

Negativity was to blame for everything: your poverty, your job or lack of, your relationship or lack of, and then the biggie - your health. 

Sadly, I allowed her to shame me for years. Decades even. For not being thin enough, outgoing enough, healthy enough, just not enough. I was always loyal. That's how I'm made. I NEVER competed with her because there was no point. Her own sister-in-law once told me that was the only way we had ever remained friends, because I never tried to compete. 

She even changed her major to mine mid way through Sophomore year and started working at the English department. All the while, I struggled with my health, always wanting and waiting for her to understand. Basically all I wanted was for her to give me absolution for not being up to her standards. 

It never came and only AFTER she removed me from her life did I accept the responsibility of allowing her to treat me that way for so long. I had so much more say than I realized. Also, I was relieved. I am still relieved. Her decision ended up being the biggest gift. For both of us.

Not having her in my life is such a release. Doesn't mean I never miss the extended family that I loved. Doesn't mean I don't still have a hollow where I held space for her most of my life. And yet, I'm so grateful. Not too long after getting dumped, I realized that the loss of the kids was the worst part. I fill each hollow with all the jokes, songs, smiles, and the best of the memories, knowing that I will never allow any treatment like this to happen again.  

Now, I do my best to be the bestest best friend to myself first. Doesn't always stick. But, I'm learning. Every day. That way, when I'm that level of friends with myself first, it's soooooo much easier, and a hell of a lot more fun to be any level of friend with me.

Swiftly

I watched The Eras Tour on Disney+. I went into it knowing only a few songs from Red and 1989 (the year I graduated High School ugh) and then a couple of melody through lines from Midnights. But that didn't stop me from smiling, singing, and even crying during "All Too Well."

Here's how far Taylor reaches: I called my mid 70's parents' at home and when my Mom answers there's all this noise in the background:

Me - What's all that noise?

Mom - Oh! (Excited) We're watching The Concert on Disney+. Dad even turned on the surround sound.

Me - Really? How is it?

Mom - It's great. I really like her. I don't know any of the songs but I'm having fun. Where else could I see this concert? I could never see her in person. (Pause to listen to the song) I even think your Dad is enjoying it.

Since then she's watched another documentary about her and is deciding which albums to buy first.

How cute is that? My Mom is a brand new Swiftie.

Okay, I might be one too.

Piece of Peace

During my sophomore year of college in my first class of the day, I would always sit down and get organized, then take my yummy lemon scented cuticle cream out of my bag and center myself, while moisturizing my cuticles. It was my little Moment of Zen before the day would begin. 

Half way through the semester (yes, this was back when there were semesters) the girl that generally sat behind me, finally got up the nerve to ask what I was doing every day. She found it soooooo curious and mysterious. She admitted how she waited for that moment every day, to just watch my little ritual. It calmed her. Made her day better.

My peace gave her peace. 

You never know the impact you can have. Just with a little bit of cuticle cream.

Don't Hand It To Me

Recently what I've discovered is that like Tony Stark, I too, do not enjoy having things just suddenly handed to me.

As the kids say, gives me the ick. 

I get in your car and then BAM you hand me something? Nah. I need time. You walk in my home and instantly hand me something? Nope. I'm not looking at it. It's going on the floor or the counter. 

I need time to understand WHY I'm being handed the thing I'm being handed.

I'm not expecting this to make sense. I don't even understand it. 

Did you ask for this information? No. 

I just handed it to you.

On Being a Shithead

Talking to my Mom, of course. Talking about life, expectations, how I mostly have only had my brain my whole life. She mentions that I'm clever and I say that I know how much more clever I could be. Her response had us laugh crying for fifteen minutes.

Mom - Well, you're not MENSA Shart.

Me - Wait, did you just say shart?

Mom - I don't know. Did I?

Me - You said shart. That could not have been more perfect.

We're both crying. 

Me - I need this on a shirt.

She's still crying.

Me - We could start our own club: The Sharts. (I start singing the melody to the Jet Song from West Side Story)

This is peak Mom conversation. 

First Fiction

My very first date with Preston was at the theatre to see "Pulp Fiction." He had been lobbying for this date in major ways. He made a sign that read "Will Work for Heidi" and stood on my road waiting for me to pass him on my way to work. 

I stayed home sick and never saw him.

Then he called and we arranged the date. I picked the movie. Because, of course.

Then, we're there. And THAT scene starts. He leans over and quietly asks "do you want to leave?" He's soooooo uncomfortable. Because, of course. I tell him "Oh no. I want to see this."

It's still going. He asks again. I pat his arm. "I'm fine." He's not fine.

The movie ends. I loved it. He's a wreck. Thinks he broke any chance with me.

He never had a chance. I was still in love with someone else. Because, of course.

https://letterboxd.com/journal/crushed-worst-movie-dates-valentines-day/

Wishing Star

 My New Year Wish is for everyone to get their wishes for the New Year. 

No matter how improbable, huge, selfish, tiny, redundant, crazy, lazy, or silly. I want everyone to find their bliss. 

Now, if your bliss is to be a whacko hurting humans and animals, I have nothing to do with that, and we're most likely not friends. So, no. No wishes for you. **not so fine print**

Somehow in this life, I have always maintained hope. Even when pain seems unending and it's just one more thing after one more thing, I never lose hope.

I have hope for us. Yes, all of us.

Driving Rain

 I was watching Hurricane coverage on The Weather Channel and while the broadcaster was outside on a street in Georgia slicked with rain, commenting how most of the town was shut down, a UPS truck passed behind her. 

I laughed at first, imagining frivolous Amazon purchases or other online orders hurriedly being delivered inside a hurricane. Then I smartened up and remembered that people get their meds delivered and other healthcare devices. These are important and possibly life saving, specially for elderly people and the disabled that will be affected with major power outages and road closures. 

These drivers deserve every bit of the raise they negotiated. Plus hazard pay.

Get the Lead Out

 Most mornings I've been writing in my dream journal about all the dreams I had during the night and morning. I use my favorite mechanical pencil. I've had that thing for decades.  Well, I started to run out of lead. I searched and searched my apartment for the replacement lead (which I was positive was here somewhere) and could never find it. So, I ordered more. 

Today I'm putting the new lead into my most favorite mechanical pencil and decide to put the new lead somewhere that makes sense, where I won't forget it: at the bottom of the ceramic jug holding all my pens. 

When I dump out all the pens what do I find? All the replacement lead.

I have enough lead to last until the apocalypse.

Tongue Tied

 Dream if you will, a picture - of my Mom and I at a stoplight. Suddenly she notices a man to the left of us in the back seat of an old model Four Runner having a VERY animated conversation with the driver. With every word he is waving his bright Orange Polka Dot tie and using it as either emphasis or as the reason for each syllable.

Naturally we're intrigued, and a little bewildered. 

Then I start the voiceover for Tie Guy -

TG - Do you see this? This stain? This happened because you stopped so short. F$&K you Geoff! 

Mom laughs.

TG- I inherited this from my Great Grandfather and now it has frappuccino all over it because you can't drive for shit Geoffrey.

More Mom laughter.

TG- IT'S SILK!! CAN'T YOU SEE THAT IT'S SILK!! 

You owe me a tie you idiot.

The vehicle turns with Tie Guy still waving his tie and berating the driver.

Mom and I are both cackling.