11/18/14

In Which We Marvel

I spend so much time in bed, examining my brokenness. I slide my tongue over my teeth, counting the cracked ones. The craggy half teeth. The chips, the holes.

They will soon be all gone. It seems I have convinced myself this is the worst thing that could happen to me.

--
I was in Mexico two weeks ago when a tiny part of my lip went numb. My right arm tingled and my legs were hot with sun. The numbness spread. My entire chin lost feeling. Part of my right cheek, too.

I went to the doctor and he shrugged and said to get a brain MRI. He said he did not think anything was wrong. 

I went to the dentist and she was more concerned so she sent me to the oral surgeon who stuck his fingers in my mouth and pulled until a bad tooth was excavated. It hurt like hell, and I don't admit that easily. My pain tolerance is high and it is a point of pride for me, the way I beat my chest. Toughness.

The oral surgeon and I discussed when he would remove all my top teeth and replace them with a denture. I was bleeding and drooling and still half-crying as I tried to negotiate down the price of the seizure of my teeth. $2700 + $1800 for the denture. He said he would work with me. I said, I'm on disability, I only get a thousand a month. The receptionist said she would mail me a quote.

My chin is still numb. I have my MRI this afternoon. I am sure it is fine. 
--

I wake up most mornings with a terrible headache. It gets better once I take my prescription migraine medicine but those few minutes of consciousness are truly terrible. It is like this almost every day.

I can't look at screens when my head and mouth hurt and this is when I marvel at the brokenness of my body. I scan it. The head hurts, the nose clogs, the mouth is a minefield. The throat hurts, the thyroid was cancerous, the lymph nodes perpetually swollen and sore. The chest aches, the stomach paralyzed (but temporarily fixed with Botox injected during a sedated endoscopy weeks ago). The pancreas: useless now that I am a full blown type one diabetic. The hips, the knees, the feet, these things ache in the everyday.
--

I can’t get over the teeth. I don’t want to have a gummy smile. Being toothless is cute for five minutes in the first grade.
I have to time it right. So that I’m toothless for a week in early December. They will take seven teeth out and then there will be open sockets that will need to heal. I’ll need pain meds, and salt water, and ice and heat. I need to get it done asap, but I want to eat Thanksgiving dinner, and I don’t want to miss gymnastics with Sadie. I have to plan it just right. I have to download movies I want to see. I have to refill my Dialudid. I have to do this just right.


It’s the little things, the everyday things, the stuff we take for granted that when we lose them, we are shocked. We marvel. We let them pull the teeth. We move on.

11/14/14

It's Not What You Think: Type One Diabetes



Over the course of my 28 years on this planet, I've received some crappy news. Like being told I had lupus. Or finding out I've been wearing the wrong bra size for all these years. Hearing that I had cancer. Finding out that Brad PItt and Jennifer Aniston were splitting up. And one day, in the hospital, learning that I was now an insulin-dependent diabetic and oh, Amy Poehler and Will Arnett are dunzo.

Yes. I have heard all that in these crazy years of mine.

But the most jarring diagnosis of mine, the one that has truly changed my life, has been the diagnosis of type one diabetes.

Becoming a type one or type 1.5 diabetic has, for me, completely changed my life. It has taken control of my day to day activities and it has affected and worsened my lupus. Everything that was wrong with me before has only worsened with this diagnosis, and it scares the crap out of me.

A day with diabetes begins with a morning finger poke to see what my blood sugar was overnight. I then take my medicines for my Other Multiple Diseases (trademark coming) and fall back asleep. If my number is below 100, I will have a small snack, like a spoonful of almond butter or half of a banana.

I go on to test my blood at least 6 more times during the day, depending on my activities and how I feel. I test before each meal, and I must count the carbs in the meal or snack and figure out how much insulin I must inject into myself before eating. I inject myself with a needle that makes most people very squeamish. (I have a certain lovable male friend who needs warning before I go ahead and do so. Which makes me laugh because he isn't even afrad of bears and bears are WAY EFFING SCARIER.)

I check my sugar before I drive, before I babysit, before and during exercise. I keep emergency snacks on my person. My purse is littered with used test strips.

My ideal range is between 100-160. But the number on the meter is not just affected by what I put in my mouth. It varies wildly depending on stress and other illnesses. And because I suffer from frequent lupus flares, my diabetes is incredibly hard to control. 

My hands, feet and my head shake when the number is low. My vision blurs. I sometimes lose 50% of my cognitive function. I seem drunk and can't communicate what I need. Being low is incredibly dangerous for a brittle diabetic. Falls are common, and I monitor myself very carefully to make sure I do not slip. When I am babysitting, I take extra precautions. I let myself run a little bit higher as a safety net, because it is safer in the short term to be a little be higher.

When the number is high, I get headaches, sweats, and mood swings. Extreme highs can lead to a condition called DKA, which can lead to coma and death.

Like lupus, type 1 is autoimmune. It is NOT CAUSED by bad eating habits or lack ofexercise. It also CANNOT BE CURED. Insulin is a tool to save our lives, but it is not a cure. 

My body is on a suicide mission, an internal war fought by unwilling cells. And it affects my livelihood every day. 

--

When I wrote about this last year, I noted my sugars were often in the 400s. This is VERY VERY bad. It has already caused side effects that may not be reversible; I get neuropathy in my feet, and tingling in my legs. Last week my chin went numb and my doctor said "it may be from the diabetes." My poor chin! It had done nothing wrong.

Thanks to my doctors and friends like type 1 mom Sara Jensen, my numbers are better. But type 1 diabetes will never be completely controllable without a cure.

It is as big of a challenge as it was a year ago and I'm realizing it will never get easier.

And so my goal for living well with diabetes is to eliminate my terrible cravings for chocolate and donuts, and to embrace better food choices.  I am better than I was but really, I have miles to go.

I am 28. And this is my life with diabetes.

Donations for the fight against diabetes can be found HERE: donations.diabetes.org.

10/30/14

The One Where I Say Giant Nipple




I spent the weekend in the city with my friends, wishing Meghan and Declan a proper goodbye to London. On Sunday, Genevieve, Rachel and I spent the day ambling around Central Park and having cocktails and Important Life Talks.

At brunch we were talking about almost being 29 and having to think about babies and I said, extremely confidently, that I did not want to have children anymore. That I have such a close bond with Sadie that I don't feel the need to have my own child. I said that I am so easily sick and exhausted, I feel it would be unfair to be only sort of present for my kid. I can't imagine having more than one and I do not want to have an only child.

And everyone kind of looked at me, shocked. Because I am the Baby Whisperer and children adore me. They are drawn to me. At story time, the babies crawl toward me like I'm a giant nipple or something. I have never really understood it but I have always loved it. 

I am pretty great with them and oddly enough, it makes me feel like I have enough babies surrounding me that I don't need to have my own. Is that weird?

I feel pretty strongly about this but today I was putting Sadie down for a nap. And we fell asleep together and she rubbed my back and laughed and sang me songs and I sort of wished she were mine, or that I could have one that is ALL mine, one who I wouldn't have to drive home at 5:00. 

But then she left and I was too exhausted to read or function. And I wondered if I am protecting myself from wanting children because I'm too afraid of what would happen if I let myself want them. Maybe I am too cowardly and selfish to picture my life with them, because of all the things I would have to do and give up.

I meant everything I said at brunch and I love children, especially those related to me, so much. It feels like enough. Maybe it is for now.

But maybe. Maybe I'm too afraid I won't get better to become a mom, and if I can't get better enough to be a mom,  I never will.

Maybe I never will.

10/14/14

KPB Photography

I've dabbled in photography for years, and as a result, Sade is likely the most well-documented child in the world, but recently I've begun to take it more seriously. So I setup a Facebook page for inquiries and to show off all the pretty babies in my family. You can check it out at the link below.

Thank you!

9/16/14

Happy Birthday, Sadie.

Dear Sadie,

Today, you are two. You've known you were about to turn two for awhile; every time I asked how old you were, you'd say one. Then I asked how you were going to be, and you said two! And you tried to hold up two fingers, but really, you just made the gun sign with your fingers. Sometimes the Star Trek sign. 

I'll make sure you get it right before your party, although I know if anyone asks, you're not going to do it. You'll get really shy and overwhelmed by all the kids, and you'll clam up. You take a few minutes to warm up. Even when you're at library class, you sit in your little chair between Kerry and Molly and search for me, right behind you, for the first couple minutes. You never get restless anymore while the teacher reads. At the end of the class, I prod you to say "thank you" but you're so shy! You usually wave, though.

Two. You are a big girl now. in many ways, you are the same Sadie you were at one. Goofy and happy and an avid fan of books and my iPad, which you only get once you've completely exhausted me for the day. Right now you're obsessed with the videos on my phone. "Vid-yo. Vid-yo." God, kid, you must say it twenty times a day. You love watching yourself laugh and run and your favorite one is you on the swings. "Wings!" you say.

You've always found me very funny. But now you laugh at me ALL THE TIME. If I run into something, you laugh! You laugh at me now, and it kills me. "Sadie!" i exclaim, as if I'm really hurt. And you only laugh harder. You are much nicer to Pop-Pop.

A couple weeks ago, we took you to Chuck E. Cheese. Mama went out to the car for something, and I let you run wild. I'm a little more free-range this way. For a terrifying second, I couldn't see you. And then I looked down and you were trying to figure out how the video games were plugged in. You are a lot like your dad. You're always trying to figure out how everything works, how everything fits. You are a lot like your mom. You love to mother your babies. You love books. You are so sweet, when you aren't trying to make me laugh with your sneaky, witty ways. You love big and you spread your affection wide, just like my sister does.

You love cars and trucks and trains and Minnie Mouse. You love your babies and the teepee I bought you at Target. You love to go in there with your books and baby dolls. 

I still take naps with you, even though it's probably a bad idea. Lately you have gotten very clingy. Last week, I turned to sleep on my side and you scooted over until you were the big spoon to my little. I love watching you wake up. It's the only 30 seconds of the day when you're not at 200%.

You love the beach. You love the ocean. You got over your fear of pools. You are an outdoorsy kid. You love "outduuuur." Your favorite thing to do is take "outduuur" showers. You could stay in there all day, filling up buckets, washing the sides of the shower, hiding from me behind the curtain. It's getting cold now, and I'm preparing for the fits you're going to throw when we can't go outside every second.

You are only two, and so you are easier to understand than grown-ups. I know you better than I know anyone else. I know exactly what you want when you want it. And God, you are such a good kid. My love for your eclipses all the frustration of toddlerhood. 


You are sticky, sweet joy. I hope I never forget your first two years. (That's sort of the point of documenting you.) You are so goddamn lucky. You're a star, and I think you need a sibling soon or else your ego may become Auntie Kelly sized.

Sadie, I love you more than anything else on this planet. Thanks for being my reason to keep going. Thanks for being born. And thank your parents for letting me be such a huge part of your life. I take this role very seriously. 

I always will. No matter how much you laugh when I stub my toe. Stinker.

Love, 

Auntie Kelly



9/9/14

How to Beat the Flu and Help Diabetics!


Hey, check this out! This is a great way to support the JDRF. Just print this flyer and bring it to a Walgreens or Duane Reade to get your flu shot and a portion of the proceeds goes to the JDRF, which goes toward research and care for type one diabetics.

(A quick serious note: right now my body is immunocompromised. I have to wear masks on airplanes, that's how susceptible I am to infection. So if we hang out, PLEASE get a flu shot. There's different strands of the flu and even a seemingly minor infection will land me right back in the hospital, even though I'm already vaccinated against flu and pneumonia.)

This is a perfect way to support kids & grown-ups with Type 1 while protecting yourself against the long winter ahead! Thanks for all the continued love and support! ��

8/28/14

A Light-Hearted Dispatch from Hoppy, My Newly Named Hospital Bed


I've officially spent 8 days here: Wednesday. Thursday, Friday, Saturday, Sunday, Monday, Tuesday, Wednesday. Today is Thursday and I'm for another night.

If you remind me of how beautiful those days are, I will cut you, and you'll be reluctant to free me from anyplace, anytime.

This morning was interesting! I was going to get to go home, despite the nonstop PukeFest2014, but then my blood sugar tested at 545.

In layman's turns, my pancreas is Jack at the end of Titanic. Occasionally spurting out some signs of life, but mostly just frozen, half-dead and weighing me (here, I am Kate Winslet. Duh.) down. 

I've got no love for my pancreas. Float away, already!

So I'm here another night, having been tested, scanned, radiated and stuck more times than I can count. Oh wait yes I can it's SEVENTEEN. These baby hands may charm and freak you out, but they are shit when it comes to pushing IV drugs. DUMB BABY HANDS Y U SO SMALL?

My parents have been here regularly, cleaning me up when I puke, changing my lines and helping with everything because, you know..."I've been a nurse for 35 years!"

And she does help. And I'm grateful for her and Dad, who's constantly dropping in even though I am a cranky, drugged, sick, stinky millennial, tweeting my miseries into the great big Cloud of Embarassment. He's here, and so are Kristie and Greg, and many more friends and family have called, and wrote me and made me feel so much less alone. Sorry I won't let you visit, but I look rabid.

My team of specialists (basically a full football team) has figured out what's going on and though I don't care to specify at this time, I will admit to saying this. IT SUCKS. My body is an automated Berg-killing machine! Luckily, everything looks benign, but we must kick some gastric, pancreatic, neurological, psychological, rheumatologica ass before I attempt to strike out on my own again.

California will be there, unless it falls into the sea (sooorrrryyy) and I will be there soon. I am aiming for November. 

But more than that, I hope to be managed and healed and alive to see Sadie turn 2 in two weeks and 21 nineteen years from now. Baby's first lemon drop shots! Her realization that Auntie Kels is a cougar and she should run to another bar! I can't wait!

Kids, I don't live a day without pain. But that's not gonna stop me living. It's a big world. I've only just begun.

Thank you for the support and gifts and love. I am humbled and emboldened by each of you.

Love and drugs,
Your Kelly

PS: Many of you have asked how to help: fundraising for First Descents would be the ultimate gift. They are my cancer family and the best thing I have ever been a part of: Dotcom Fundraises for Important Cause

Thank you. I love you all madly.