Ingram Ink

The primary writing portfolio of Kelseigh A. Ingram.

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Conference Recap

This past weekend was the 30th annual Turner Syndrome Society of the United States’ National Conference. I’ve been attending these since I was 10 years old, starting with the Atlanta conference in 2005. This year we went to Denver, Colorado and had an “I love the 80′s” theme.

As my mom is the right-hand woman to the conference coordinator, we left on Tuesday the 18th and drove down to Nashville for our flight. Once we got to the massive hotel, I had a bit of a headache due to the altitude change which went away after I took some pain meds.

I got to catch up with Thea, who was one of the first friends I made in Atlanta. The next day, my friend Taylor made it to Denver and the three of us had a blast. On Thursday, my friend Holly, her sister Ekhi, and her parents arrived! It was great to have most of our gang reunited (my friend Jenna missed this year, and my friend Emory hasn’t been since 2008 so it’s always been odd not seeing her).

Friday was kicked off with a speech from Amy Cimorelli, of the band of the same name. She has Turner Syndrome as well so a lot of people were excited to have her there. I’ll admit, I was concerned that she was only there for PR reasons (we had an incident with a non-TS singer performing at the conference one year just for PR and we’re still angry about that). She also performed with her sister Katherine, who seemed very open and sweet when I spoke to them. Amy seemed standoffish, though that could have been nerves. Frankly, I’m still not sure.

I also did the Healthy Heart Project again, and I’m pleased to report that the echo looked fine!

The talent show was a blast as always, though it was weird having the Cimorellis taking on Emily Havrilak’s role as the MC. We also had an 80′s karaoke night where I sang “Walking On Sunshine” by Katrina and the Waves. My friend Holly brought down the house with a lovely soprano rendition of Stevie Nicks’ “Landslide”.

Saturday brought breakout sessions with Dr. Jessica Lord-Bean, one of my dear friends and mentors on both self esteem and the adoption process. My favorite part of the latter was her discussing her experience with transracial adoption, as it’s something I’m considering. It made me feel more at ease. We also had a dance party with non-stop 80′s music and we danced the night away.

Another Saturday highlight was the fathers/spouses/partners/sons/brothers/etc. singing “My Girl” by the Temptations - my father included! It was such a great surprise.

I missed the closing ceremonies on Sunday due to sleeping in, but I spent time with my friends before they left that day.

My parents and I got home yesterday after flying from Denver to Nashville, then driving back to Boonville (note: never fly Frontier).

For me and my friends, these conferences are our safe place. While there, we’re free from people without TS telling us we talk too much or that our table manners are wrong (even though they’re fine) or that we’re just weird. We can finally be around people who get it. I can’t wait for number 14.

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Diagnosis and Finding Out

I was diagnosed with Turner Syndrome in utero (meaning my mom was still pregnant with me when she found out). A process known as amniocentesis was used, which means a sample of amniotic fluid containing fetal cells is taken from the sac surrounding the fetus and is then tested for genetic “abnormalities” (actually just variations). Turner Syndrome is one of the variations most commonly found via amniocentesis.

After the diagnosis, Mom found out as much as she could about TS with what information was available in 1994. That way, she knew what was coming when I arrived and could make sure she was mentally prepared to raise a kid who would need extra medical care.

She also made sure I knew fairly early on (at least, I don’t remember a point where I didn’t know about my diagnosis). I’m grateful for that; I doubt I’d be able to trust her at all if she had waited to tell me.

Having known from an early age also helped me be okay with it; I’ve never really had a period where I’ve grieved the fact that I can’t get pregnant (though that’s not to say it won’t happen; I imagine if I were to end up meeting someone I could see myself building a family with, I’d probably go through some tough emotions regarding that, even if I hate the notion of pregnancy).

It’s important to find out if your kid has Turner Syndrome as early as possible (though if you’re concerned about the 0.5% potential for miscarriage, at birth is a good point). And I can’t stress enough how vital at is that your child knows what’s going on from the beginning.

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Conference Time

It’s July, which means it’s almost time for the annual Turner Syndrome Society National Conference. This year, we’re heading to Denver, Colorado, and I couldn’t be more thrilled.

Conference is when I get to see some of my closest friends in person. We all live in various places throughout the country, so these few days together each year are precious to us.

I also get to see what advances are being made in the world of growth hormone therapy. I hated going through it when I was a kid, and I’m always thrilled to see when improvements have been made so that it’s less scary for kids now.

The greatest part of the conference is the Saturday night dance party. We get dressed to the nines, put on gobs of makeup, and dance like a bunch of fools. That party is when I’m most comfortable dancing.

The breakout sessions can be cool as well. One last year covered anxiety and depression which I really appreciated.

Every other year a study called the Healthy Heart Project is there. The Healthy Heart Project is a study that conducts heart echoes to gather information on heart issues in people with TS. I’ve been involved with the study for years and it’s always interesting.

Mainly, for me, conference is about relaxing and hanging out with people who actually get me.

I can’t wait to get there.

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One Less Method

A while back, I went to my pediatric cardiologist with my mom to see if it would be safe enough for me to undergo in-vitro fertilization (IVF), given my history of congenital heart issues. My mom was there for moral support, which helped.

I wasn’t necessarily hoping that I’d be able to carry a baby; I just wanted to see if I had more than one option for becoming a parent.

When we asked my doctor if it would be safe, his answer was no. It would be highly likely that both myself and the baby would not survive due to the stress that labor would put on my heart. All three of us started tearing up.

Frustrated would honestly be an understatement when trying to describe how I felt then. It was as though I’d been robbed. I just wanted one more path to parenthood available to me, and I couldn’t even get that.

Even then, I still don’t like the idea of pregnancy. Morning sickness, contractions, and everything else pregnancy entails aren’t appealing to me at all.

Still, that doesn’t change the hurt that such a lack of control over my reproductive future causes. Regardless of my feelings on pregnancy, I still want as many options available to me as possible, if that makes any sense.

I’ve known that I can’t get pregnant for my whole life, so I haven’t really had a proper “grieving period” over it. But I’ve no doubt that it will at some point happen. And when it does, I think I’ll manage to get through it thanks to a pretty solid support system of doctors, friends and mentors within the TS community and outside it, and more.

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Going Under

If you’re weirded out by blunt medical talk of any kind, I suggest skipping this.

Last month, I went to my primary care doctor because I had some concerns about how my hormone replacement therapy was functioning. Because I have Turner Syndrome, my body doesn’t produce estrogen or progesterone on its own (and in some cases, it does only in very low amounts), so I have to take replacements so that my body can function as it’s “supposed” to do (meaning, have a period every month).

For some context: I take Premarin (an estrogen replacement) three weeks a month, then Provera (a progesterone replacement) for a week. The first week back on Premarin, I have my period.

I went to my family doctor and explained my concern. She recommended me to Dr. Juran, a wonderful gynecologist, as she’s focused on reproductive care.

When I went to Dr. Juran’s office, she explained that the way my body was operating is normal; my cervix are just more likely to bleed than others. She even gave me options for how to lessen or even completely stop the bleeding. Then she had me do an ultrasound, and that’s when things got scary.

It turned out that the ultrasound showed walls in the uterine lining, so she decided to have me undergo a hysteroscopy (where they put a camera in the uterus) and a D&C (usually done for miscarriages, but in my case to get a sample of the lining to be sure everything was fine).

The day of the procedure came, and I was an anxious mess. Because of my heart condition, I had to be put under anesthesia, which meant an IV. I’ve never been good with IVs, so I wasn’t looking forward to it being inserted.

Surprisingly, I managed to stay calm when it was put in (and even went to get it inserted by myself instead of hanging on to my mom’s hand like I usually do). The procedure itself didn’t take very long, and I woke up saying that I wanted McDonald’s (as always). After an hour, I went home and slept until dinner (but not after vomiting due to anesthesia).

Fortunately, it all turned out fine; the walls in the lining were caused by cycling the medication, and there had been some scar tissue that is no longer there.

The whole experience was terrifying, to say the least. I honestly thought it was going to be a worst-case scenario, even though they’d said before the procedure they most likely wouldn’t find anything worrying. But Dr. Juran really helped allay those concerns. However, it was a reminder of how often I feel much older than I actually am because of my health, even if it’s in good shape by Kelseigh standards.

Here’s hoping there’s no more scares like that.

A quick selfie from pre-op, because of course I’d take one before any medical procedure:

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(Re)Introducing Me

It’s been a long time since I touched this blog. I looked through my old posts and, while I’m proud of the things I’ve written, I feel like a change is needed. And for me, that change starts with a post reintroducing myself (though I never really did in the first place).

I’m Kelseigh. I’m 22 years old and recently graduated from Indiana University with a Bachelor of Arts in Journalism degree.

I’m introverted, at times misanthropic, and something of a pessimist (which means I end up being either right or pleasantly surprised). Okay, maybe I’m not that pessimistic. 

I also think people are capable of some really incredible things. Movements like Black Lives Matter and events like the Women’s March give me hope that maybe humans can get over themselves enough to care about others and create a world where justice for all actually exists.

I talk a lot about Turner Syndrome, which is a chromosomal condition I was diagnosed with before I was even born (you can find more information about it on the bio page). More specifically, I talk about how those of us with TS are portrayed in media, the health issues that can go along with it, and attempt to broaden our understanding of what someone with Turner Syndrome looks like, because there’s no singular experience of having it or being someone with it. There’s always room for more nuance.

Asking me about musicals is a bad idea, because I WILL NOT SHUT UP ABOUT THEM. It’s a problem. Don’t even get me started on my love of Stephen Schwartz’s Pippin.

I acted with my local high school from 3rd to 12th grade, and even took some theatre classes in college, but now my focus is on writing. I studied journalism, but my last semester at IU I learned I really like writing plays. Right now, my plan is to go to grad school for it. We’ll see how it goes.

If I’m not having an existential crisis, you can find me dreaming of the next time I get to have some Gatti’s pizza.

Mainly, this is gonna be a blog for me to post some writing, mainly personal essay-type things.

Feel free to tag along.

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How My Infertility Made Me Pro-Choice

Note: this is a repost of an article I wrote for the Huffington Post.

Ever since finding out that I couldn’t conceive when I was very young, I’ve never really had a moment where the fact that I would never give birth bothered me.

If anything, the only upsetting part of this revelation was that I had the choice of whether or not I would have a biological child stolen from me.

The lack of options I have in how I become a parent gets my blood boiling to this very day.

So imagine my anger when I see lawmakers and politicians try to take away reproductive options from those who can conceive.

I knew then and there that I was irrevocably, unapologetically, 100% pro-choice.

A question I often see asked by those opposed to the notion of reproductive freedom is “If you don’t want the baby, why not put it up for adoption? There are lots of people who can’t have kids but want them!”

My answer to this is: people who can get pregnant do not owe us children, and it is unfair to push hurtful legislation on them in order to fulfill our wants.

Yes, children are wonderful, and I would love a great deal to be a mother someday. But I also know that it is not another person’s responsibility to provide me with a child to bring up.

It is not fair for me to make someone go through a pregnancy against their will. And if I do become a mother, I will make sure my child holds this same deep respect for other people’s bodily autonomy.

Yes, learning that you will not be able to have a child that looks like you can be incredibly painful. It is a wound that can take a very long time to heal, and for some it never does.

But why should we take our pain out on those who can have children and deny them the freedom to use their own bodies as they see fit? They are not the cause of our pain, so why treat them as if they have wronged us?

While it is important to express the pain that can come along with infertility, it should never be directed towards taking away another person’s freedoms.

I knew that the best way to deal with my frustration over the limiting of reproductive options that come with infertility would be to make sure that other people who can conceive didn’t have to face the same frustrations that I have, sometimes to a much greater detriment.

Nobody should be denied access to birth control because of my circumstances.

Nobody should be forced to go through a mentally and physically exhausting pregnancy because of my circumstances.

Nobody should have to die from a back-alley abortion due to lack of access to safe and legal clinics because of my circumstances.

My pain should not dictate what another person is or is not free to do with their body.

And that is why as someone with infertility, I am completely, unquestionably, 100% pro-choice.

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Disclosure

Anna sat quietly on the edge of the bed as she waited for her partner Dana to join her. They’d been together for a few months now and had learned quite a bit about each other. However, Anna had opted to keep a few details of her personal history to herself until she felt comfortable enough to share them. She explained that this would be the case and Dana was very understanding about it.

Dana entered the room, her hair in a silk cap and wearing a t-shirt representing her favorite hockey team.

“Dana?” the petite woman asked.

“What’s up?” Dana replied.

“I...I need to tell you something.”

“You don’t have to if you’re not ready to.”

“I know, but I am.”

“Alright. What is it you want to tell me?” Dana asked.

Anna took a deep breath, steeling herself for what she was about to say.

“I have Turner Syndrome. It’s a chromosomal disorder that doesn’t occur in a lot of live babies. It also messes with your endocrine and reproductive systems. It’s why I’m so short and why I take those estrogen and progesterone pills.”

Dana sat down and wrapped her arms around her girlfriend, holding her tightly.

“Thank you for trusting me enough to tell me that. I can’t imagine how difficult that must have been. You are an amazing woman and I’m very lucky to have you in my life.”

Anna gave the woman she was certain was the love of her life an affectionate peck on the lips, thankful to have someone who understood.

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TS and Medication

As someone with Turner Syndrome, I take a lot of different medications for a lot of different things.

For starters, I take Synthroid to help with my hypothyroidism (meaning it operates less actively than it should). I also take allergy pills (because the genetic lottery decided I didn’t get enough great luck) and Celexa for my anxiety. I even take Cozaar, a blood pressure medicine, for my kidney disease.

Now on to the more interesting stuff, also known as Hormone Replacement Therapy (HRT). Because of having Turner Syndrome, my reproductive system doesn’t work like it should (hello nonexistent ovaries and underdeveloped uterus), so I have to take medicines that help me produce estrogen and progesterone, namely Premarin and Provera. These allow me to get the hormones I need and help me actually have a menstrual cycle. Without this, I could end up with endometriosis or other, more serious health issues.

I also take Keppra and have done for the past few years. I had an absence seizure around Christmastime when I was 20, and they decided to put me on it to be safe. I haven’t had one since then, but I think I’m on this medicine for good.

I also take Melatonin to help me stay asleep. It tends to work well.

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Cardiac Update 2:

So I had my heart echo at another branch of the cardiology clinic here in town today. It went pretty well and took about 40 minutes. The technician had a little trouble getting good images from a particular angle, so another one was brought in to help out and they ended up getting the pictures they needed.

It’s always interesting to watch the monitor when getting an echo. Seeing the mitral valve flap up and down tends to mesmerize me, as does watching the ventricles at work. The only part I hate is the goop.

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Dear TS Conference Friends:

First of all, I love you. More than words could ever properly express. My life has been made infinitely better by your presence in it.

Thank you for letting me rant and rave and vent and not feel like garbage after doing so. It’s not easy spending most of your time around people who will never get it, so I value every minute I get with you. There will never be enough of them.

You are wonderful, smart, kind, funny, phenomenal people. Why you’re hanging around a dork like me is beyond understanding, but I’m grateful for it all the same.

I cannot wait to see you again.

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Parenthood

I think about parenthood a lot these days, especially with the recent celebrity pregnancy announcements. I see their stomachs expanding as time goes on and they wait to deliver what will eventually become human beings once outside of the womb.

I think about what it would be like if I were able to experience that.

I imagine I’d at first be shocked, because never in a million years would I imagine I’d be able to get pregnant (or find someone to have children with for that matter; I’m not really the type of woman men want). Then I imagine I’d be thrilled because I end up having that option after all.

However, that’s not my reality, and that’s okay. There are multiple ways to parenthood and they are all valid.

My way is via adoption. Domestic or international, I don’t yet know. But I plan on being honest with any children I have about how we came to become a family.

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Last Night

Ethan sat at the kitchen table, looking at the Genotropin pen he’d been using for as long as he could remember. It had been a faithful companion as he attempted to reach his goal height.

It was hard to believe this would be the last time he used it.

At about 16 years old, his growth plates were pretty much closed and that meant he had gotten as tall as he possibly could. His endocrinologist had been a great source of information for him whenever he had a question. He was glad that he had good doctors to help him navigating having Turner Syndrome.

Taking a deep breath, Ethan turned the dial so that the pen had the correct dosage. He then used an alcohol swab on a section of his stomach that he then squeezed between two fingers.

Picking up the pen, he was thankful for the needle guard. He could never stand the sight of the needle so it helped make taking the shots easier.

Ethan placed the guarded needle against his stomach and then began pushing it into his skin. He felt the telltale prick of the needle followed by the click of the button signifying that it was ready to be pushed and administer the medicine. He pressed the button, and that was it. The last time he ever had to take growth hormone.

He was looking forward to seeing what would come next.

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Cardiac Update:

So I had a new patient appointment at the cardiology clinic in my college town today. I met with a nurse practitioner who was really nice and wouldn’t mind following up with.

Things sounded fine and my blood pressure was normal, though a bit low (which is interesting since I was on blood pressure meds for my kidney). I got scheduled for an echo next week and it should last from 45 minutes to an hour.

I appreciate that it’ll take that long and that they want to be thorough and not miss anything. I also really appreciated that the nurse practitioner was honest and said that the cardiologists at the clinic didn’t feel comfortable taking on clients with congenital heart defects (like me and many other people with Turner Syndrome) because they don’t feel knowledgable enough on the subject, especially since mine is structured differently than most people’s hearts and they would help me find a cardiologist who is.

The last time I had major heart issues was when I was 3 years old. I hope I don’t have any more for a very long time, and I’m sure my new cardiologist will help with that.

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Growth Hormone Therapy

I took growth hormone therapy from the ages of 4 to 16 (with a break from the ages of 6 to 10 due to how anxious it made me), and I honestly hated it. I’ve always despised needles and, when I was small, wanted them imprisoned for ruining my evenings (why young me thought inanimate objects could commit crimes is beyond understanding). 

However, I don’t regret going through it. It allowed me to get incredibly close to my goal hight of 5 feet (I’m 4′11″). 

I went through various methods of growth hormone delivery, once of which was the Saizen cool.click®. It is a needle free system that seemed like a Godsend to my family and me. However, the few years I was on it proved to be ineffective for me. I jumped when the button to deliver the medicine into my bloodstream via skin absorption was pushed, meaning I didn’t get as much medicine as I should have. However, it’s worked for other patients so I encourage testing it out to see if it’s right for your child.

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What Having Turner Syndrome Means to Me

For me, having Turner Syndrome is most heavily associated with community. By being a part of the Turner Syndrome Society of the United States and attending annual conferences since I was 10 years old, I’ve been able to connect with some of the most amazing people I’ve ever met.

Being part of this group means finally being around people that actually get you. Because try as they might, those in our lives who don’t have TS never truly will.

Most importantly, having Turner Syndrome means family. A family that is infinitely stronger than the one you’re born into simply by virtue of being formed by choice.

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Representing Turner Syndrome in Media

I can only think of two examples of Turner Syndrome being represented in pop culture; one of such being the 2006 Law and Order: SVU episode “Clock” (in which the character with TS wasn’t even played by a someone with it). So I thought I’d put together some tips on how to accurately represent us in media:

Acknowledge not all people with TS are women. In order for Turner Syndrome advocacy to be truly effective, we need to be supportive of people of all genders who have it, including trans men, intersex, and non-binary people. While quite a lot of us (including myself) are women, not all of us are.

Have characters with Turner Syndrome be played by people with Turner Syndrome. There’s plenty of us out there. You just have to be willing to find us.

For the love of all that is good, do not infantilize us. We may look young, but we are capable of having healthy, mature relationships with other adults.

Realize that our reactions to infertility are varied and not all of us grieve over it. All of these reactions deserve to be seen.

We’re capable of being pretty conventionally smart, but for some of us it shows up in other ways.

How much Turner Syndrome is a part of our identity varies as well. For instance, I consider it to be a key part, if not the most important, of who I am. But that’s not the case for everyone.