Oh I'm definitely letting it go to my head. Goodnight, Firecracker
I warned you not to get cocky with me. WTH, Firecracker? Really? Goodnight, Taran
Chapter 7
Lyra
Taran did end up delivering some work yesterday, the day after we texted. We got to say a quick hello while he spoiled Brody with pets and treats.
I had to rush back inside for a meeting, but just briefly seeing him was enough to make my heart hum. It was truly ridiculous. I hate someone having this much of an effect on me. It makes me feel powerless and I've had enough of that for two lifetimes. I'm mature enough to not lie to myself, I'm well aware that I'm very attracted to him. It's the fact that I'm so attracted to him without really knowing him that scares me. Is it a rebound? For now, I need to push it all aside. Taran and I have plenty of getting to know each other to do, and nothing is going further until at least the divorce is finalized.
I've had to cut my workday short today to finally put aside my fear, and see my doctor to assess what's going on with my jaw. To say I’ve been dreading this appointment is a huge understatement. My jaw is starting to become too uncomfortable to be ignored anymore though, I can feel the bones creaking and scraping. My house is about an houroutside of Philly, and that's where my endocrinologist is located. Dr. Yamada has been seeing me for the past ten years, ever since my original endocrinologist Dr. Baldani retired. Dr. Baldani was the one who saw me from the very beginning at the Children's Hospital of Philadelphia. For 28 years I've been coming into the city for treatment and check ups, ever since I was diagnosed with the genetic disorder Turner Syndrome at age 8. I'll never forget that day. When I was born, the doctors discovered a whole host of issues. I was cross-eyed, almost entirely deaf because my ears were not able to drain fluid, and had a cleft palate.
After several rounds of surgeries by the time I was 2, most everything was looking normal. My hearing was pretty well restored, my eyes still get slightly lazy when I'm super tired but they're not crossed anymore, and all growing up I had palate expansions and braces for my mouth to correct the cleft palate. When I was 8 though, my parents started to get worried. I wasn't growing much, and my little brother was starting to tower over me. We went to all kinds of doctors and specialists.
Finally, we ended up at CHOP, where Dr. Baldani took one look at my left hand and diagnosed me. The fourth finger on my left hand is nearly as short as my pinky, and there is no knuckle. It's not something that ever registered before, probably because it became more pronounced as I grew, but he saw it right away. It's a telltale sign of Turner Syndrome. Every issue I had been born with was connected to this genetic disorder. Only women are affected, and it happens when something goes wrong with one of the two X chromosomes we have.
I manage to find parking fairly close to Dr. Yamada's practice, though driving in Philly still scares me after all these years of coming here. It's not for the faint of heart.Sometimes I take the train if I can. I walk the short distance to his office building and head up to the 5thfloor to check in with the receptionist.
“How are you, Denise?”
“Lyra! I'm well, thanks. How are you? It's good to see you,” she says warmly.
I've had my marriage crumble around me since I was last here, thanks so much for asking. No need to be a downer, though. “I’ve been good!” I say with as much genuine enthusiasm as I can.
“Glad to hear it. Dr. Yamada will be right with you, I'll let him know you're here.”
“Thanks.”
I get lost in thoughts of the many trips here to Philly for my treatments while I wait. Every three months for over a decade my parents took me to CHOP. At first they both came. Then after their divorce, it became a day with my dad. I had to get measured, all sorts of blood tests and ultrasounds, bone scans, EKGs, you name it. I had a favorite phlebotomist who I will remember forever named Lakisha. She never missed a vein, smelled wonderfully like peppermint instead of hospital, and always made me laugh. I was put into an innovative study where I received growth hormone treatment for my height in daily injections. My parents, my big sister, and I all learned how to give the injections properly at home. Reviewing the growth chart was always the highlight of the trip. The growth hormone worked. Instead of topping out at 4'6" like it was projected, I ended up reaching a very respectable 5'. By the end of the day though, especially in the beginning, I was ready to cry from all of the poking and prodding. Only the promise of a milkshake and BLT at the Medport Diner on the way home kept me fromlosing it. I'm still a very food motivated little gremlin to this day.
I'm about to pull out my e-reader, which I obviously take everywhere, when Dr. Yamada comes out and asks me to head on back with him. We head to his office, and I plop down in one of the seats in front of his desk while he goes to sit behind it. He has floor to ceiling windows behind him, and I can see CHOP in the distance.
“How have you been, Lyra? Any changes since I saw you last?”
“Nope! Everything is status quo. No new complaints aside from my jaw. My numbers at my last physical were all good as well, thankfully.”
“Yes, I saw when your PCP sent your latest labs over. That's wonderful. No new reactions to the birth control pills or changes to your cycle?”
It's a good thing I've grown comfortable with him over the past few years, even though it should not be an uncomfortable conversation. He and my gyno have had to work hand in hand to make sure my hormone levels are good and are generating a cycle for me.
“No changes there, either. Not going to lie though, I can't wait for the day I can stop all of it.”
He chuckles because he's used to my nonsense by now.
“You've been through a lot, Lyra, but you're at the maintenance stage now of your hormone therapy. The worst of it is long behind you, it's just the pills at this point to give you a cycle. Now we need to talk about your jaw, though. You were one of the first girls in the study using growth hormone, so we didn't know what the effects would be. When you were young, all of the charts show you grew like a puppy. Your hands and feet grew more quickly than the rest of you until you grew into them. Just like your handsand feet grew faster, one side of your jaw grew more quickly than the other. We told you it was a possibility, and it looks like it happened. Why didn't you address this when we first became aware of it over a decade ago, once you stopped growing? Now you're in pain because the joints are reacting to the uneven bone structure.”
I feel my hackles rise, but I force them down. He's being kind about it, even though his reprimand has me wanting to get defensive.
“It just wasn't a good time back then, and then I forgot about it until it started to become really uncomfortable. Plus I was in between coming off of my dad's insurance and onto my own, worse policy back then. It's a poor excuse, but there you go.”
He sighs. “I get it. You may still have trouble getting it covered, but we will work that out with the specialist in New York state. I'm giving you that referral for Dr. Oren that I mentioned before, who is one of the best jaw specialists on the East Coast. He's going to take measurements, x-rays, the works and then send them to me so I can add them to your study file. Now let's take a quick look at your jaw. Follow me down the hall please.”
He leads me to an exam room where he first scrubs his hands, before putting on his gloves. The exam goes on like usual as he listens to my lungs, looks inside my mouth, checks for any swollen glands in my neck, and all of the other lovely basics. He measures my jaw so that he can compare notes with Dr. Oren when I see him. Once I was too old to go to CHOP, endocrinology still remained the point specialty of my care when it came to anything related to my genetic disorder. That was the department that put me in the study and ran it at the hospital, and it carried over. I see my primary care physician and other doctors likenormal, but I still check everything in with Dr. Yamada if it has anything to do with the study treatments. Since the current situation with my jaw is because of the growth hormone, he needs to see me first before Dr. Oren decides next steps. He warns me that surgery is likely with screws put in place to correct the imbalance. I ask jokingly if my jaw will be bionic, since the news makes me too jittery to do anything but make light of it. When everything is done, he walks me out to the reception area and shakes my hand.
“I know it's a lot to have to deal with this right now, Lyra, but you'll get through it like everything else. It's a wonder that you were born with Turner Syndrome and survived, let alone thrived the way you have. This is why you women in the study were called the Miracle Women, and you have always been one of the biggest successes beyond even the wildest expectations when it began. Whatever needs to be done to your jaw will be something you can handle.”
My throat tightens, because while his words are meant to reassure, they feel like a weight. I've been told this nearly my whole life, the stats have been drilled into my head. 1 in about 200 fetuses have it, which is already not that many. Only 1-3% of those fetuses with Turner Syndrome are even born alive, let alone able to become a fully functioning, relatively healthy adult. I really am incredibly grateful that I'm alive and ok. I've never felt like much of a miracle, though. I've always felt different, and other. Not only that, but it put my family through a lot. They never were anything but supportive about it, but it took so much time, money, and effort to get me the treatment I needed. I couldn't help but feel like a burden. I've never even met another girl that has Turner Syndrome except one, when we both had to go in front of a board for insurance coverage.Her case was much worse than mine. It all depends on how the chromosomes fall. Sometimes one X chromosome is missing entirely, sometimes it's malformed in some way, and sometimes it ends up on the wrong side with the other X chromosome.