Invisibility Cloak

Last week someone declared it to be National Invisible Chronic Illness Week. (I wonder if there will be Hallmark cards?)

Unless you see me testing my blood sugar, fiddling with the buttons on my insulin pump, or if we are good friends, changing my infusion set, you probably wouldn't know I have a chronic disease. You would be more likely to mistake me for being really drunk than realize I was having a low blood sugar. You would probably assume my insulin pump was some weird lame-looking mp3 player. You would think I had a bit of gas and was chasing it with Tums rather than know that I was gobbling up glucose tablets to treat a low blood sugar.

"But you don't look diabetic!"

So, I'm a bit late, but here's my 30 Things About My Invisible Illness You May Not Know:

1. The illness I live with is: Type 1 Diabetes

2. I was diagnosed with it in the year: 2007

3. But I had symptoms since: five or six months prior

4. The biggest adjustment I’ve had to make is: um, all of it

5. Most people assume: That I'm so in control that my disease isn't really a problem.

6. The hardest part about mornings are: Leaving bed.

7. My favorite medical TV show is: Does this count?

8. A gadget I couldn’t live without is: My insulin pump.

9. The hardest part about nights are: Eating a brownie too late at night which forces me to wake up at 3am to check my blood sugar.

10. Each day I take __ pills & vitamins: I take a multivitamin, that's it.

11. Regarding alternative treatments I: Wish I could fix this with herbs.

12. If I had to choose between an invisible illness or visible I would choose: Can't I just pick "no illness?"

13. Regarding working and career: I work a lot, and sometimes wish I had more of a career.

14. People would be surprised to know: I consider myself extremely lucky, health-wise.

15. The hardest thing to accept about my new reality has been: Being judged.

16. Something I never thought I could do with my illness that I did was: Shove 2 inch long needles into the softest part of my stomach!

17. The commercials about my illness: Annoy the crap out of me since 99% of them have to do with Type 2 diabetes, which is only ever referred to as "diabetes" leaving some people to worry when they see me eating cake. Brimley is awesome, though.

18. Something I really miss doing since I was diagnosed is: Wearing bikinis without any tubing coming out of me.

19. It was really hard to have to give up: Eating without thinking.

20. A new hobby I have taken up since my diagnosis is: Counting carbs! I'm better than a teenage anorexic at estimating carb and calorie counts.

21. If I could have one day of feeling normal again I would: Walk, no, skip, no, DANCE around naked eating cake.

22. My illness has taught me: I'm much stronger than I thought.

23. Want to know a secret? One thing people say that gets under my skin is: Can you eat that?

24. But I love it when people: Understand.

25. My favorite motto, scripture, quote that gets me through tough times is: Keep on keepin' on

26. When someone is diagnosed I’d like to tell them: Don't worry, you're in control.

27. Something that has surprised me about living with an illness is: How normal being "abnormal" can feel.

28. The nicest thing someone did for me when I wasn’t feeling well was: Visit.

29. I’m involved with Invisible Illness Week because: I've got one.

30. The fact that you read this list makes me feel: Grateful you care.

Perhaps a Revision Is In Order

I wanted to share this story on NPR on my way to work this morning.

I have decent insurance at the moment, but it costs me $400/month in premiums just for the privilege of paying close to another $250/month just in copays for all of the fabulous accessories I need to stay alive. I tried last year to change my plan to something more suited to my needs, but was denied for every other plan I applied for because of my (gasp!) pre-existing condition.

Please contact your local congresspeople and tell them you support healthcare reform.

We can do better than this.

Happy Anniversary

Two years ago today I walked shakily into my doctor's office. My heart was racing. My family and friends had been telling me for weeks not to worry, that it was probably nothing, but my gut (who, incidentally, has never yet been wrong) told me otherwise.

The muscles in my legs felt like they were ripping away from my bones as I sat down in the waiting area while Greg checked me in. I fumbled in my bag for my water bottle. It was empty. My tongue felt like a raisin embedded in a wad of cotton.

The nurse took me back to check my vital signs. While the automatic blood pressure cuff was inflating, she asked me to extend a finger. "Why?" I asked, even though I knew the answer.

"There's a note on your chart for us to check your blood sugar."

"Oh, that's strange, I wonder why..." I trailed off.

Cha-chunk. The nurse squeezes a drop of blood from the tip of my index finger. It comes reluctantly. It still wants to hold on to these last few moments of "before" as much as I do.

The nurse sucks up this tiny drop with a test strip, and the machine counts down

10
9
8
7
6
5
4
3
2
1

"Um, wow, I've never seen that before-" the nurse disappeared and I heard her ask another nurse "What the heck this means."

I exchange helpless glances with Greg. He knows now, too.

She comes back looking white and rushes me into an exam room, telling me hurriedly that the doctor would be in right away.

Greg and I say nothing. I feel my eyes well up with tears.

The doctor comes in, slides her stool very close to me, and looks at me squarely in the eyes.

"Well, the good news is that we've figured out what's going on with you. The bad news is that you have diabetes."

My memory gets foggy here. I remember her pulling out a note pad and drawing a cell, a sugar molecule and a key that she labels "insulin." She tells me that my pancreas has stopped producing insulin, so no sugar can penetrate my cells to give them any fuel. She makes quick downward spiking arrows coming from the sugar molecule, explaining that I have been "just peeing everything out for months."

That explains those twenty pounds I lost. That also explains all of the peeing (more on that later).

A nurse comes in and starts feeling my arm out to place an IV. My doctor explains that they need to take me to the hospital immediately. My blood sugar levels are so high their meter cannot even detect an actual reading. It just says "HIGH." No one understands how or why I am still walking around. I am, apparently, on the verge of slipping into a coma.

I'm just thirsty. Oh and I can't walk up or down stairs any more- it's too painful. And I can't sleep because of the leg cramps. And I have to pee every 7 minutes or risk wetting myself.

My mind is elsewhere.

What happens next?

The doctor keeps talking but I just hear pieces.

Insulin management.

Injections.

Testing.

Ketones.

Carbs.

Diligence.

Control.

I am lifted onto a gurney, strapped down, wheeled out.

A biker in an EMT outfit throws a mustached smile in my face.

"Hiya honey! What the hell is going on with YOU?"

We make small talk in the ambulance. The biker EMT tells me I'll be fine, I'm so young.

I look at Greg. He is white. Staring at me. Mouth agape.

Speechless.



I have been living with Type 1 Diabetes for exactly two years now. I can't decide if that feels like the correct amount of time. It's difficult for me to remember a time when I could just pick up a piece of food and eat it without thinking. Without math. Without needles or buttons or blood.

Most of the time, I don't think about it. I just do it. Test. Count. Inject/Program. Eat. Wait. Test. Repeat. Live.

But it never goes away. And it never will. And that's okay.