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.

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.

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.