Author: Brianna

In case you live under a rock the Supreme court (SCOTUS) overturned Roe v Wade this morning. Roe granted abortion rights to women and people who can become pregnant. You might ask your self what this has to do with diabetes, turner syndrome, and me. Well I am here to explain that to you dear reader (I just caught up on Bridgerton). Just to be clear on where I’m coming from, I think whether or not someone gets an abortion should be a choice between a person’s health care provider and themselves, like any healthcare decision. Abortions are too complex an issue to make blanket legislation around them. It’s not black and white like people want it to be. So now that we have that out of the way. Let’s go…

First of all pregnancy for me would be extremely high risk. Having turner syndrome means I am at higher risk for coarctation of my aorta. I have to get an echo and a MRI/MRA every 5-10 years or so to make sure my aorta isn’t going to explode. Pregnancy exacerbates this risk. When you add in type 1 diabetes and hypothyroidism my pregnancy would be considered very high risk and there is real risk of life threatening (or ending) complications. Right now I’m not sure I even want to take on that risk. No matter how much I have always wanted to carry a child. I’d rather adopt and be alive to raise my child than risk dying trying to carry one. Whatever I decide, because of the risks I would like that decision to be up to me, my future husband, and my healthcare team. Choosing to start a family is a big, life changing decision. Whether it’s good or bad. It’s life changing. Luckily while turner syndrome brings high risk pregnancy, it also means the chances of a spontaneous pregnancy are slim to none. We are talking Jesus working miracles level chances. So hopefully there will be nothing that isn’t planned. Which brings me to my second point…

I was told at 15 years old I could not have children. The story of how insensitive the doctor was in telling me this is a story for another day. Should I choose to take on the risks of carrying a pregnancy my only option is IVF with an egg donor. While it is too early to tell what effects overturning Roe will have on fertility treatments there is a good chance it is going to change things and not for the better. At least according to those who work in the field.

My last thought is how overturning Roe is opening a door to overturning other supreme court decisions that have to do women’s health issues (and people with uteruses). Justice Thomas wrote in a concurring opinion today the Supreme court should reconsider Griswold (as well as Obergefell which deals with gay marriage)which dealt with contraception. While I used to be the person who thought others were overreacting when they shouted about Roe being at risk I was proved wrong. Everything is on the table with this court. I have been taking birth control as hormone replacement therapy (HRT) since I was 12. It’s how women with turner syndrome go through puberty. You might roll your eyes and think why is it so important you go through puberty? Periods suck anyway. It’s the mental impact. Being the friend who hasn’t gotten their period yet is uncomfortable. More importantly replacing the estrogen I am lacking protects and prevents osteoporosis. IDK about other people but I would like not to become immobile due to hip fractures at a young age. I want to do everything I can to protect my bones so I can live a long, active, independent life.

My healthcare choices are already dictated by what my insurance covers so I would like to keep whatever choices I have left when it come to MY healthcare. I want every person to be able to make a choice this is right for them. That’s the simplest way I can sum up this issue. Healthcare is a deeply personal decision and abortions are healthcare. So kindly, get out of my uterus.

Well, blog friends,I did a thing. I got a tattoo! I am a few months late, but I wanted to do something to commemorate 10 years with diabetes. If you had told younger me I would end up getting a tattoo in my twenties she would have thought you were crazy. Even as a teenager I absolutely hated needles and would freak out if I had to get a shot. Life happens, things change (you get diabetes), and here I am. Almost 29 years old with a fresh tattoo.

I’ve had this idea in my head pretty much since I was diagnosed with diabetes. I just never had the courage to go through with it, but one of my closest friends said she wanted to get a new tattoo for birthday so I took the opportunity. Plus having friends go with makes it was better.

I always felt any tattoo I got should be meaningful. This one definitely is. I have always felt that music has given me the words for what I’m feeling when I can’t find them on my own. Defying Gravity is probably my favorite song. I first saw Wicked while on my middle school’s east coast trip. When we got to the NYC part of the trip we went to a Broadway show. The show they picked was Wicked. I fell in love with this song the minute I heard it and during intermission sprinted to buy my own copy of the soundtrack. If you haven’t figured it out, I’m a little bit of a theater nerd. At least I really love watching live theater. If I had any kind of singing talent I’d participate. If you do not know this song you’re missing out on a great song and the magic that is Idina Menzel and Kristin Chenoweth harmonizing together. Your ears will thank you.

This song is the first one I play when I need a confidence boost. I especially love the verse

“So if you care to find me
Look to the western sky!
As someone told me lately
“Everyone deserves the chance to fly!”
And if I’m flying solo
At least I’m flying free
To those who ground me
Take a message back from me

Tell them how I am defying gravity!
I’m flying high, defying gravity!”

Getting Defy Gravity tattooed on my arm is a reminder to trust myself and my abilities. I’ve been “defying gravity” since before I was born. 99% of babies with Turner Syndrome result in miscarriage. I beat the odds just by being born. If I can overcome those odds I can do and get through anything life throws at me. Including diabetes.

For those who are not in the diabetes world, a blue circle is the international symbol for diabetes. The date is the day I was diagnosed with diabetes. Even though diabetes was not the first chronic illness in my life, it is the one that takes most of my time and energy. It has also played a big part in my choices as a young adult. Even if there is a cure I want to have a reminder of the impact diabetes has had in my life. Perhaps I can add to my tattoo when there is a cure?

Whatever happens in life I will continue to defy gravity. That doesn’t mean it will be easy, just that I will keep trying.

Since I moved to Kansas City 5 years ago I have seen 3 different endocrinologists. Tomorrow I will see my 4th. None of this has been of my own doing.

I started out rotating between Dr. R and a nurse practitioner T. Names changed because I don’t call people out on the internet. I would go every three months and see one of them. Ultimately seeing each of them once every 6 months. I liked them both especially T. After every visit and portal message she would say something positive and encouraging and thank ME for allowing her to participate in my care. She once called me after 6PM on on a Friday to make sure I treated a low before I drove home after seeing my BG was low on lab work I’d had done after my appointment. Needless to say, I am a T fan.

Dr. R is older and has been doing this for years. He always called me a boring patient. Which I took as complement. I adored his RN who checked me in. I still miss her to this day. She was the absolute BEST! Dr. R always reminded me of a disheveled professor with his crazy hair and funny socks. I loved the rotation of seeing both of them. Unfortunately T left in 2019.

I continued seeing Dr. R until I could set up with another NP/PA. Dr. R still found me boring and didn’t think I needed to be seen every three months. Also he doesn’t have clinic on my day off. Enter M who is a PA and was my 3rd endocrinologist.

At first I was nervous to see her because after some snooping I realized we are the same age. Yes. I have reached the age where providers are the same age as me. That’s a whole other dilemma. M ended up being super sweet and I liked her. She also was the first endocrinologist to look at my entire endocrine history. Once I was diagnosed with diabetes none of my endocrinologists payed attention to my tuner syndrome. If hadn’t brought it up M would have missed it in my medical history. After getting her up to speed she made sure I had all the monitoring I needed for Turners and took care of my diabetes. She recommended I be seen in the multidisciplinary Turner Syndrome Clinic and be seen by yet another endocrinologist, Dr. E, who did the endocrine part of the clinic. I am so thankful for her attention to detail and getting me to all the right providers. I will miss seeing her.

I was hoping to see Dr. E in July during Turner Syndrome clinic, but I wasn’t able to. I had an appointment scheduled with her for November, but had to reschedule it to February. Doctor’s are busy. Don’t put off scheduling to see them. My appointment with her is tomorrow. I have heard to great things about her, but I am still nervous. Seeing a new provider is always a little nerve wracking. I have retell my story and worry about what kind of comments they will make about my weight. I’m well aware of my potato shape and I am trying to work on it. Also that is not why I’m usually seeing a provider. I’m hoping this appointment goes well and Dr. E will be the final piece of my provider puzzle. Trying to get a care team together who is willing to work WITH you is so important when chronically ill. We are the ones who live with the disease so we deserve to actively make decisions about our care not just be talked at about what we should be doing.

Side note… If you are happy with the care your provider gives you please fill out those surveys you get about your visit. It’s usually only done when there is something negative to say. Those little comments go a long way.

Hello again internet world!

I know I promised more regular blog posts, but life has been busy.

I am taking patho this semester. I have always enjoyed patho because I love learning about how different diseases work. I am also always curious what the textbooks say about my chronic illnesses and how it reflects my lived experience.

Spoiler…it almost always is very inaccurate and generalizes

This week is our genetics module. As I learned in my high school biology class you can not talk genetics with out talking genetic disorders. Of course Turner Syndrome gets brought up. If you’re new here Turner Syndrome is a genetic disorder that only affects females. Instead of having 2 X chromosomes we have 1 The primary symptoms are short stature and premature ovarian failure (I can’t have kids on my own). The description in the textbook is usually accompanied by an unflattering picture similar to the one below

I hate the textbook picture because it is not a reflection of what I look like as someone living with Turner Syndrome. A quick google or instagram search will confirm that most of us with it do not look like this. It annoys me because whenever Down Syndrome is talked about they always pictures of happy, smiling people who have Down Syndrome. For some reason they can’t do that with any other genetic diseases??? Come on!

I hate reading the description because it usually mentions somewhere that about 99% of cases of Turner Syndrome end in spontaneous miscarriage. It makes me feel lucky to be here and also like I shouldn’t here. This has created this weird complex where I feel like I am supposed to be doing something super amazing with my life since I beat the odds. Like I need to prove I am worthy of existing.

I wish medical textbooks and curriculum would focus more on really showing the patient experience. It makes for a more empathetic healthcare provider which I believe gives better patient care and better patient outcomes. This part of why I chose nursing over being a doctor. Also I hate math.

Thanks for sticking with me though all my ramblings. One last thought, February also happens to be Turner Syndrome awareness month, so who that’s cool I guess

Today marks 10 years since I was diagnosed with diabetes. I’ve been trying to find the words to explain the emotions I’m feeling. The things is, there isn’t just one.

There’s frustration. Today is a reminder that there really is no end to this disease. I was told when I was diagnosed there would be a cure within 5 years. Here we are. No cure. Not even a promising breakthrough. What is the point in counting. It’s not like there is an end date on my diabetes.

There’s sadness. This day always brings me back to that early morning laying in the hospital bed. The resident doing his pre-rounds and telling me “It looks like you’re going to need insulin.” It wasn’t even 7AM and I was alone. Barely awake.

There’s fear. I remember being in the hospital for the first time and saying goodbye to my mom and sister when they went home for the night. I was left with the not so friendly night-shift nurse. I remember my first night home and the pricker I was supposed to poke my finger with wasn’t working. I got frustrated and threw it as I started crying. My sister grabbed me tightly in a hug and calmed me down. I don’t know if she remembers that, but I always will. Hopefully you’re reading this now, E. It was the one time during those 3 days I let myself feel anything.

Pride. Looking back at 18 year old me I’m amazed at how far I’ve come. I used to hide my diabetes. Now I’m here writing about it on the internet. I’ve done so many things and never let diabetes stope me.

There is happiness. I am still here. Living. My limbs work. My mind works. I get to do something I love everyday. I have amazing friends. My family is supportive.

Then there is the gratitude. Which is the hardest to reckon with. If I could get rid of my diabetes I would. In a heartbeat. But, I know that without it I would not be who I am today. It gave me a passion and pushed me towards the career I was supposed to have. As stressful and scary as going back to school has been I know it’s what I’m supposed to do. I cannot wait for the day I can look into a teenager’s eyes, pull out my pump and say I get it. Or look at another young girl and say I have turner’s syndrome too. I get it.

Diabetes has made me a more empathetic and caring person. Especially at work. When parents call on the phone worried and scared their teenager isn’t taking their meds I hear my mom talking to my doctors about teenage me. When parents are crying because insurance won’t let them fill their child’s medication I want to cry with them. I know exactly what the teenager means when they say taking 5 pills is just too much and they can’t do it. I know what they mean when they say they want to be normal. Nothing fulfills me more than the relief in a parent’s voice when I have reassured them that everything is going to be ok and we will take care of their child and whatever they need.

How can something that I hate so much have given me so much at the same? It is such a strange thing to hold. I don’t know what the next 10 years will bring, but I am excited to find out. I really like music and feel like songs do a better job expressing my feelings than I could on my own. Tonight we are ending with a quote from one of my favorite songs.

“Through the joy and pain that our lives bring, we can do hard things” – Tish Melton, We Can Do Hard Things

Hello internet universe!

Sorry for the short hiatus. Life has been a bit busy lately. I have a lot of thoughts so this is me trying to make them coherent. With gifs!!!

School started back at the end of August. It has been kicking my butt and that’s why I haven’t written in awhile. I feel like I’m running on a treadmill that doesn’t stop. Balancing school with a full time job, plus my side gig of stand in pancreas is exhausting. I truly do enjoy and love my job. Even on the hard days when I want to GTFO as soon as 5 o’clock hits. Being in healthcare is exhausting in a way that only other healthcare workers know. Dealing with other peoples needs all day is another level. Especially when you’re an introvert, like me. I usually need significant downtime to recover, but now that time is filled with school work. With all of that I simply didn’t have the mental energy to write.

I had an appointment with my PCP a few weeks ago. We were discussing the added stress and anxiety. She said “Unfortunately working in healthcare is stressful, and it isn’t getting any easier”. Then we gave each other the look of silent commiseration and understanding that healthcare workers know all too well. It makes me sad that that is the feedback people who are wanting to become doctors/NPs/PAs/RNs get from those in the profession. It’s not uncommon though. The thing is, I could not imagine doing anything else. Most people in healthcare feel the same way. We are just so tired.

I got to spend my lunch break making calls to my own mail order pharmacy and trying to explain to them why my glucagon wasn’t written for a 90 day supply. Also trying to find out what the deal is with Humalog needing a PA. They kindly suggested I switch to Novolog because it is preferred and less expensive. The first person I talked to was incredibly unhelpful. The second person I talked to was helpful, but did not have a good answer. Also I just looked it up and Novolog IS NOT ON THE FORMULARY! So it would not be cheaper. Now I’m even more upset. I hate it when insurance and PBMs dictate care. Hopefully my endo (really her nurses) can work some magic and get a PA approved.

To add to that I went to get my COVID booster after work and ended up being there for almost an hour waiting. I thought the pharmacist was going to have a mental breakdown in front of all of us. TBH I wouldn’t have blamed her. The drive though was constant. The line inside was 5 people deep. She was having to go between giving COVID boosters and people picking up their meds. Between the people all quietly annoyed at the wait and the stress of the workers it was not a fun time to be an empath. I felt bad for being there and adding to the stress. Then the pharmacist had the audacity to tell me diabetes doesn’t make me immunocompromised and only being a nurse made me eligible. Ma’am it’s listed right there on the paperwork, YOU had me fill out, under chronic medical conditions. I wasn’t in the mood to argue. Then she did the thing people do when they find out I work in peds. She said “I could never work with sick kids. I don’t know how you do it.” I never know what to say that. It’s like like when people say “I could never poke myself or give myself shots”. I booked it out of there and didn’t wait the 15min.

That my dear readers is just an average Thursday as a nurse with diabetes and anxiety aka my life. I am incredibly thankful for friends you can text when you’re freaking out at Walgreens. Then laugh about cracker barrel in the same conversation. Or friends who make jokes with you about having a disability. Living this life wouldn’t be doable with out them. Even if I don’t mention it’s been a rough day just talking to them makes everything better.

Thanks for reading my inner ramblings. I’m hoping to get on a semi regular schedule of posting so be on the look out.

I was watching Modern Love on Amazon Prime this weekend. For those who don’t know it is a tv show based off of a weekly column in the New York Times. People write in telling their love stories. Each episode is a 30min vignette adaption of someone’s story. Highly recommend checking it out.

I was on the second episode of the new season when the diabetes feels smacked me in the face. Let’s set the scene…

This episode was about a young couple where the girl has a condition that causes her circadian rhythm to be flipped. She stays up all night and sleeps all day. When she tries maintaining a regular sleep schedule she “feels like she is constantly jet lagged. Having worked nights for 3 years I totally relate. It’s awful. Things go well for the couple until she misses brunch with her boyfriend’s mom because she didn’t set an alarm and overslept. They get into an argument and the guy complains about how they never get to do normal things and he has always had to adjust to her. The girl defends herself saying she has a medical condition. It’s not a lifestyle choice and it’s good to know how he’d act if she got sick someday. He doesn’t miss a beat and then says “If you were actually sick I’d take care of you”. That sentence stung so much I audibly gasped and clutched my pillow tighter. The look on the girl’s face is one I recognize from my own face.

No one has ever told me my chronic illnesses aren’t real, but for the most part they are invisible unless I choose to show them. People forget that I am doing all the same things they do, but with diabetes in tow. I show up to work after a night of being woken up after multiple lows. I show up when I feel like absolute crap because my blood sugar was 400+ most of the night because I went to bed without putting my pump back on after my shower (I’m human. it happens). Even on a normal day I am constantly making decisions about my blood sugar.

People also don’t realize how serious diabetes is. You don’t just take insulin and everything is fine. Everything seems fine because if the constant effort I put in. I see it in little comments here and there. Hearing the boyfriend say if you were actually sick felt like not being seen or heard. It’s like someone telling you you aren’t worth it. Or that your lived experience isn’t true. It hurts. Even more when it’s someone you love and trust.

The fact that a 45 second scene could stir up all this emotion also shows just how insidious this disease is. The fact you never know when those feelings will come sucks. For me, once they come it is hard to get rid of them. It puts me in a funk for a few days. Today all I wanted to do was lay in bed and listen to sad songs with deep lyrics (Bon Iver or City and Colour). Instead I showed up for work and gave 100% of the 5% I had to give. This is why they say they say the mental burden of diabetes (or any chronic illness) is the hardest.

I have been wanting to start a blog for a long time and have made several attempts before. This time I want to take it seriously. Living with chronic illness and being a nurse has given me a unique perspective on healthcare. I have a lot of thoughts and feelings on the subject and find that writing is the easiest way for me to share them.

I hope that sharing my stories as a young adult living with chronic illness will show people who don’t know what it is like just a little bit of what people like me go through on a daily basis. I also hope that others who live with chronic illness find a sense of solidarity in my stories.

A few quick tid bits about me…

I am 28 and live in Kansas City. I work as a nurse and am currently enrolled in a pediatric nurse practitioner program (Dec 2023 here I come!). I have a cat named Minerva (Minnie) who is my little sour patch fur baby.

As for my chronic illnesses I am basically a walking endocrinology textbook and have been seeing an endocrinologist since before I was born (not literally, but close enough). I guess we can start from the beginning…

I was born with Turner’s Syndrome. Long story short my last pair of chromosomes (the ones that determine sex) are XO instead of XX. It is what caused my short stature. It also means I can’t have have kids on my own. I took growth hormone injections until I was 15 or 16 to help me grow.

After 2ish glorious years of not being a pin cushion and getting to live a relatively “normal” life I was diagnosed with type one diabetes when I was 18. It will be 10 years in December. I use an insulin pump and continuous glucose monitor. Diabetes requires more attention than my other illnesses.

When my body was done attacking my pancreas it decided to go after my thyroid and gave me hypothyroidism. Me and your grandma can pop our Synthroid together at 6Am

Anyway, thats me in a nutshell. Gotta save some stuff for blog content. I don’t know where this blog will lead what will come of it, but I hope you take this journey with me