12/18/14


All I Want For Christmas Is My Two Front Teeth (plus a bedside performance by Alvin, Simon & Theodore!)

)

I wake up coughing, choking on the something that is scratching the back of my throat. I throw the covers off and the light on and in my hand is blood and a piece of a tooth.
I think of the dreams, the countless nightmares I have had about losing my teeth, and how they are all coming true. And how somewhere in the midst of that unconscious knowledge–I knew I was losing teeth before I woke up–I bled before I woke, I choked before I could see.

It is almost Thanksgiving, and then almost Christmas. But I cannot think of turkey without thinking of the pain that would accompany each bite.

-
The next day, I see my dentist. A buzz fills the room and then a pause in the action. She is thinking. The dentist tells me to open my mouth wider and I am trying as hard as I can. I feel my lips stretch and break and I wish for Vaseline. She says I can close my mouth and the dental hygienist wipes my spit and blood.

The dentist draws all the air in the room as she looks at me and says that they need to go.

All the teeth need to go.

One, two...8 teeth, all on the top. She gives me the name of an oral surgeon. Eight teeth will be removed on December 19, the surgeon says, and the denture will come in on Wednesday, and we'll try it on to make sure it fits. Your Christmas food will need to be puréed, he jokes.

-

We are living older now, I think. We outlive our teeth. At some point, many of us will face the possibility of dentures. It will strike in the oddest of ways, sting you in a way you did not predict. Your health will fail and your teeth will rot.

I don't have a wrinkle yet, or a 401k. I have no plans to age.

I leave the office, my head pounding, my left eye threatening to jump ship. The pain in my left temple is as sharp as the craggy teeth still left in my mouth. What will it be like when they are all gone?

Dentures at 28. I don't wonder how this can be; I know. Twenty eight years of medicine and chemotherapies and radiation and steroids. Osteoporosis, and gum disease, type one diabetes, chronic candidiasis, lupus, scleroderma, thyroid cancer. Each disease a sandpaper rub to my system, each disease burning me off, a little at a time. I look at the elders in my family and I covet their health.

I don't fight anymore. I don't scream. I take medicine to suppress the darkness of physical decay.

I get home and I lie in bed, in the apartment above my parents' garage.

When I thought of all the ways my body could destroy me, I did not think of my teeth. I relied on my teeth. They are bone. They are there, and they should stay there.

I did not expect this.

There is no Tooth Fairy visit for the 28 year old spitting pieces of molar into a sink. A gummy, toothless smile is not so cute when you're dressing up for Tinder dates, pulling down your lips when you smile. My body has learned to hide its flaws. My smile has changed.

I am giving up my teeth. I'm no organ donor; I'm just contributing to medical waste. There is no glory in this. There is no guts to admire in me anymore.

I ache thinking of the pull. I have lived this before. He'll take his eight teeth, and they won't grow back. I'll get my denture. I'll hope my bottom teeth don't spoil too.

I want to fight for these teeth. But it is no use. There is no way to salvage these bones.

I am so angry. The feeling surprises me, and it breaks me open, and I am flooded with the emotion I usually stow away.

I cannot fight for these teeth now, and I know now I never really did. The advice given to me ten years ago went unnoticed, and I carried on, knowing I was high risk and forgetting to floss most nights anyway. I was 18 and in college and passed out smelling like beer and cigarettes most nights.

These teeth never had a fighting chance in a mouth like mine.

I am giving these teeth up so that I can go on. Maybe these sharp pieces of bone, soon to be removed, will remind me of what is left of me: what is left to fight for, what remains at stake. They are a small part of a body that needs serious maintenance.

We are not invincible. Our strongest bones will one day break.

I didn't expect this fight so soon, and I am tired and weary. It wasn't my fault and it wasn't not my fault. Death comes for all of us, one tooth at a time.

The teeth are going, but I am not toothless, not yet.

12/12/14

A Terrifying New Neurological Diagnosis


I swear to God, I must have been Hitler in my past life.

I actually hate this line of thought; that we are reincarnated and paying, karmically, for the sins caused by our former selves.

I'm also not quite convinced of karma. I have been an asshole many times in my life, many many times in my life, but I know even bigger assholes who walk around scot-free, without any karmic retribution.

Yeah. I don't believe any of that crap.

-- 

For the past few weeks, I've been experienced pain in my lower left jaw. My right jaw had gone completely numb when I was in Mexico. I had also been experiencing MS-like symptoms. Falling often, dizzines, blurred vision.I believed this to be from the bad teeth that would soon be extracted. 

Until Tuesday, when the pain in my gums, cheek and jaw was so bad, I was admitted to the hospital.

I needed IV pain medication to sedate me, to soften my pain. I cried hysterically for days, because a pain like this was even too big for me to handle.

I had no idea something could hurt so badly, I'd truly wish to be dead so that I would be free physical pain. 

I was released Thursday morning after they seemed to come to a conclusion. and had me scheduled to meet a neurosurgeon and pain management doctor tomorrow.

They hesitated to give me the diagnosis, because as my doctor friend responded to the news :"Fuuuuck. Noooo.."

The diagnosis is more common over 50 but it is still very rare.

I am tweny eight and I have trigenminal neuralgia:a disorder of
 the fifth cranial nerve that causes episodes of intense, stabbing, electric shock-like pain in the areas of the face where the branches of the nerve are distributed - lips, eyes, nose, scalp, forehead, upper jaw, and lower jaw.


 

Trigeminal neuralgiaa (TN) is not fatal, but it is universally considered to be the most painful affliction known to medical practice. 

By many, it's called the "suicide disease." 




I am one in 15-20,000 people who get this disease.

I am suffering and awake at 4, as I usually have, but the suffering is much worse this time around.

My life is about to change. It already has.

I have a neurology appointment and then pain management after that.


I am terrified. I feel alone. I am so scared.

I'm glad it's not fatal, but my entire life is now spent trying to control the suffering brought by one of the many disease.

I have to find a way to keep living despite this absolutely horrific pain.I don't want to live anymore but I will because my life is beautiful and happy when I am not pinned under the weight of lupus, diabetes, cancer and it's after effects...and now this.

The most painful affliction known to mankind. 

The suicide disease.


11/27/14

thankful.


Is it okay for me to admit that sometimes, it's really hard to see anything to be grateful for, because I'm in so much pain it's hard to see straight, sleep or eat... 

I will be honest here because there is no point in lying about the brutal truth of chronic disease: it hurts it hurts it hurts. It fucking hurts, and it hurts every day, although some are worse than others. (see: the last 24 months.) My mouth is a graveyard, craggy, broken teeth and wide open sores. Ulcers that make me punch stuff and swear and cuss till I fall the fuck down. I'm in the thick of it.

It is hard to see what is good underneath the deep layer of pain and painkillers. It can be so hard to remember the point of this fight. But this week, I looked around and saw everyone suffering, too. I saw them living through it. I saw their grace, and I prayed for mine to come.

I am blessed with so much. Everything except good health and dental insurance, really. I am thankful for the enduring love that sailed me through the sick this year. I am incredibly thankful for my family, who take care of me in every way, and for my friends who stick it out, who empathize and try to understand. Thank you.

I am so frustrated and sick and feverish, but I am thankful to be alive, to see and smell all of this. For the fact that I get to live, and experience it all, and make new memories. I get to be here now. 

What a gift that is.

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!