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. 

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.

Blaze On

So, last night after leaving my "Living With Chronic Pain" workshop and all the healthy healing talk about fruits and vegetables, I decided to stop at Maverik for a bag of chips. On my way out of the store, I walked past a twenty-something adorable young lady wearing a bright lime green corduroy half-blazer. Being me, I didn't hesitate to tell her about it.

Me - (being unpolite and pointing right at her) That is the cutest blazer!
Young Lady - OMG! I KNOW RIGHT! It's my Mom's from the '80s.
Young Lady - face

Me - face

Me - That is so cool that you can wear your Mom's old clothes. How fun is that?
YL - It is really fun. I mean, I can't wear her jeans (she snickers) I have no idea where she got this, probably somewhere in SLC, but ISN"T THIS FUN?

YL - face

Me - face

Young Lady then said the best thing. "You probably don't even remember the 80's though."

Me - Haha, um I'm 48.

YL - face

Me - face

Swiper, No Swiping

I have put off this blog for months. Here I've been, ruminating about it, talking about it in therapy, even suggesting it as part of "homework" to boost the urgency, so maybe the expectation/curiosity of someone else would light the fire I can't seem to light on my own. What is so difficult to admit/express/share on here when I have talked about having my legs in stirrups and speculums and so much more? The answer is dating; why it terrifies me, why I shield myself from the pain of it and why I don't feel worthy of romantic love.

Most everyone has their own grab bag of insecurities to use as talismans from pain. We hold these up (not attractive enough, finances, age, too fat, too thin, imposter syndrome, job security, status) as proof to either not try for a desired goal or as the long long division data that justifies why it will just never happen for you. For myself, I tack on my health to this pile of human mental detritus. My health has turned into not only a bludgeon with which to beat myself but a dome of twisted security. I need to find a way to crack the dome.

I hear it more often than I advertise, "Why are you single?" or "Why don't you date?" The hefty nitty-gritty answer to that would take up many and sundry blog posts, but to attempt a summation; dating is selling yourself and I feel I have a product that comes with too much damage. I can hear the objections already from the people that love me. "You have so much to offer" and "Do you know what a catch you are?" This is about honesty so I will admit this is where the bludgeon comes out and I start the internal tallying of my "Why Would Anyone Volunteer For This Job" list. It is a thing. I do it well. It has served to protect me for nearly twenty years. I don't anticipate it ever going away, fully. What I am trying to see in my future is my striving to lessen its power. That cracking the dome notion I mentioned earlier? I was thinking maybe starting with a dating app.

Now, this is where I get completely frozen with fear. I know nothing about them (the last time I attempted an online date was when I had AOL and it was a disaster) and when I mentioned dating apps to some neighbor friends I got "Don't do it, all they wanna do is f@#k" which wasn't reassuring, in the least. This is the interactive portion of this blog. I await your stories; horror, love, comedy, drama. I want to know if you love or hate dating apps or if indifference rules the day (as it has for me.)

The only promise I am making to myself as of now is that once I collect all the goods from your recommendations/warnings I will at the very least install an app. That is a big-time step for me. This blog is a step for me. I am also thinking of this as possible material for future blogs and other content because my mind goes directly to the learning experience of it all, of course. Then, after I have an actual app installed, there's the next step. Who knows, by this time next year I might know what all this swipe right, swipe left business is.

Bottom Of My Heart

Update on The Unidentified Valvular Object: there is none. I had a TEE yesterday ( transesophageal echocardiography) and there was no sign of what my former Cardiologist claimed to have seen on my other echo. I started crying right there on the table, mostly out of frustration that this whole thing had to happen in the first place. 

My nurse Miriel was most likely the sweetest nurse ever. She hugged me and kissed me on the cheek after she walked my Mom and I out of the hospital.

I have a new team behind me. People I trust. What a great feeling.

After, my Mom and I went to Red Robin for a celebratory lunch where bottomless fries are much easier to swallow than a gastroscope.