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.