AUTOIMMUNE

a familiar Tune

(part two)

the NITTY:

It feels a little silly to be typing the equivalent of a Christmas Newsletter in early September, but these updates are long overdue. I usually try to post fun pictures and proud mommy moments on facebook or text people when we reach some fun goals, but I’ve given nothing but radio silence recently. The Poss family is comprised of dog-lovers, to be sure. We’ve been so inspired by our little Luna that we’ve unknowingly acclimated to her life cycle, fitting 7 years worth of experiences into one. I do plan to document everything ex post facto, but here is the quick rundown of what’s been happening the last several months (the GRITTY)…

• Kane turned 9 and finished 3rd grade. 
• Natalie turned 13 and finished 7th grade.
• Gwen finished her sophomore year at Horizon High School. 
• We put our house on the market in May with the intention of moving a bit further north toward downtown Winter Garden,  hoping that the kids could attend less crowded schools and our daily commute for activities would be cut down.
• Gwen got her braces off and performed in a few shows. (Grease, Les Miserables, Mama Mia, Into the Woods, Matilda) as well as continuing piano and vocal lessons and singing in various showcases. 
• Natalie played softball and took pop-up dance classes and also got into theatre and tech. She did tech for High School Musical, performed in Grease, and finished her last year of Girl Scouts.
• Kane played baseball, did a mini-olympic tournament for gymnastics, and became very excited about musical theatre. He performed in 101 Dalmations, a Hamilton Camp, Lion King, and Matilda. His current obsession is a video game on the Oculus called Gorilla Tag.
• I started teaching dance classes and workshops in Winter Garden. I even got to have my three favorite kiddos in some of them!
• Gwen and I traveled to NYC for a Broadway Convention. Natalie and I traveled to Georgia to visit her friend who moved away. Our family went to Illinois for Spring Break to visit family and, to Kane’s delight, it snowed!
• Bill and I chaperoned the Thespian State Festival with Gwen’s theatre troupe in Tampa. It. was. an. experience. NFT.
• Bill traveled all over the country for work. Busy at all hours of the day, it has been a stressful phase of time and he has not been properly supported in his current company.
• We enjoyed a couple staycations to relax on the beach and hang at resorts. 
• I wiggled my way into a new job, helping a friend develop curriculum for HiLite academy. It’s a brand new enrichment school in downtown Winter Garden. I’ve had a blast collaborating on ideas and schedules for the school. It has been rewarding and fun to use my brain again.
• We all attended the Friends For Life conference at Coronado Springs. We met with fellow T1D families from across the country and world!
• In July I was driving the kids down the highway when a tire blew in our “VANdalorian.” It damaged some paneling and wiring and the insurance company deemed it was totaled. We were down to one car for 3 drivers for a few weeks. We just bought a used Rogue, so now we have 2 vehicles in operation!
• Natalie went to a week-long diabetes camp. It was her first time being away from us and our first time not having information on her health. She did great, made new friends, and got a much-needed confidence boost.
• Gwen auditioned and made it into a prestigious Broadway intensive. She spent 8 days working with Broadway stars and performed a solo on stage in NYC for the first time. She also performed at Disney Springs and participated in a Disney Broadway Workshop.
• Our house is still on the market, as are many others, so we had to make some tough choices about school in order to make sure our kids’ academic, social and emotional needs are met. Gwen transferred to West Orange High School. It has been great so far, but is quite a drive from our house. Natalie and Kane are both doing school at home through a Virtual Academy. They have been doing well with their learning and enjoying other activities during the day as well. 

These past several months have been action-packed in our household. Big decisions, lots of traveling, changes made, moments together, and days apart. I’m tired just reading this list, which brings me to the crux of this diatribe…

Why is much of this surprising or new information to most people who know us? Why haven’t I posted these big moments on social media and shared smiley pictures with the world?

1. I couldn’t. (shrug) My social media accounts (plural) were hacked and deleted. In June I got an email from the Meta gods indicating I was not following community standards and my facebook and instagram accounts were suspended. I appealed right away. Later that night I was told that after review (by a panel of non-humans) it was deemed that I broke the community standard rules and my accounts were permanently deleted. Later I will write about the surprising impacts of this loss, but just know it sucked. My personal FB, personal IG, dance FB, dance IG, author FB, author IG, political satire FB and IG…gone. No way to contact half my acquaintances to invite them to a social media funeral. No closure. Bill contacted his old coworker at Meta and they escalated my case to the top dogs, people with real heartbeats. It took months, but I finally just got an “oopsie daisy” apology and everything has been restored.
2. I couldn’t. (shrug) On top of jetting from place to place for the kids and keeping the household running, I reluctantly added a bunch of medical appointments, tests, and medication/lifestyle adjustments for me. The weeks have been physically exhausting. I’m used to that (momming usually is), but it has been emotionally draining as well. I have not had an ounce of extra energy to pretend life is normal. So I didn’t. 
3. I couldn’t. (shrug) Answers are now trickling in. I am learning that the reason I have felt broken for so long, is because I am.

more NITTY: I am officially being diagnosed with at least one systemic autoimmune disease in addition to Type 1 Diabetes. Doctors are still trying to narrow it down, but I most likely have at least one, but likely a combination of the following… Lupus, Rheumatoid Arthritis, Mixed Connective Tissue Disease, and Sjogren’s Disease, oh my.

more GRITTY: Once the results of the OGTT test came in (early August), the doctors at UF explained the different stages of Type 1 Diabetes to me. In Stage 1, the beta cells in the pancreas begin dying but there is enough insulin being produced to regulate your glucose levels. In Stage 2, the pancreas cannot efficiently keep up with insulin production, but the variability in glucose levels, while abnormal, do not require external insulin injections. In Stage 3, the cells are dead and the pancreas cannot make insulin on its own to keep up with the body’s needs. This is when you become best friends with needles because without insulin, the body deteriorates. This is the stage that almost every T1D patient is diagnosed in because their symptoms are a reaction to “no insulin” and that is what brings them to the hospital. 

I am in Stage 2 and still producing some insulin which is a relief! Except it means that the symptoms I have been experiencing cannot be due to T1D. Something else is going on. My new endocrine specialist, Dr. Haller, has become my savior and new favorite person. Kidding. Kind of.

As soon as dysglycemia was detected, Dr. Haller set up an after-hours call with Bill and me (in two different states at the time) to discuss the Tzield (Teplizumab) infusion process. He took me on as a patient that same night, created a medical profile through the University of Florida, and started processing everything through insurance the next morning. Dr. Haller was one of the researchers who originally helped get the Tzield therapy approved by the FDA. He knows that if I were to wait to find an endocrinologist closer to Orlando who can get me on their schedule and then do the necessary testing, it would be too late to receive the infusion therapy.

My symptoms were alarming him of other autoimmune diseases, so he ordered over 30 tests to be done right away. Now, as each result comes in, we are ruling out some diseases and leaning toward others. It has been amazing to get some answers, and all from a doctor I have never even met in person yet!

Now what?:

This girl, who plans things years in advance, obsesses over filling out calendars and schedules, and has extreme anxiety when things are out of my control…is getting a wake up call. I thought I was already woke!

• – Symptoms change from day to day and minute to minute. I’m trying to journal things as they come so I can do my part to solve this ugly math problem.
• – My blood sugar has been increasingly erratic and I’ve experienced more lows than I should be in Stage 2 T1D. I’m waiting impatiently for Dr. Haller to tell me the Tzield is approved. As soon as he gets the approval, he will schedule me for infusions. Fingers crossed it is ASAP. Fingers and toes crossed it isn’t too late and can make a difference.
• – I’m on the waiting list for a few different rheumatologists near me. When someone gets a cancellation and I receive a call, I’ll pack my suitcase full of notes, test results, and enthusiasm and start the journey of kicking these diseases to the curb. 
• – Okay, so even though my legs are strong, even I can’t just kick autoimmune diseases to the curb. But I CAN learn to live with them. This is one of those big moments in life where I have no choice but to pivot. Priorities have shifted and my perspective has changed. 
• Because I’m making a change of habits, I might as well make a habit of changing! Here are my first changes…
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• Open Book: No, I’m not opening a book. That would absolutely not be a change of habit. I’m becoming an open book. I will try to stop avoiding my friends, pushing family away, and hiding when I can’t be at my best. I’ll be starting a blog to catalog all these changes and sharing the happy and the vulnerable moments. Let me know if you want to follow! 

Anti-woke: No, I will not stop being woke (empathetic & thoughtful). I literally mean that I’m going to stop being awake, or at least stop feeling guilty when I have no energy. I wasn’t kind to myself in the past (ever) when I needed to lay down or crashed halfway through the day or had to cancel plans. My body has been so busy attacking itself on the inside, there has been no fight left for the outside battles of my day-to-day life too. 

And on that note, to follow through with those plans to be gentle with myself and to and practice what I preach, I’m going to end this here. I’m definitely tired of typing and you’re probably tired of reading. Air hugs and winks and hats off to you, family and friends, for thinking of the Poss Fam bam.