You’re Just Not My Type.

Dead Ole' Pancreas

There is an inspirational meme that goes around Facebook every so often that says, “Live every day like it’s your last.” It’s usually sparkly or has rainbows or a black and white beach scene or some equally pukey thing. That’s so adorable. In theory. In practice? It’s a damn depressing way to live.

A year ago I wrote about being diagnosed with type-2 diabetes and what a downer it was. (Lousy Anniversary, June 2012)

Oh, what a naïve little kitten I was!

Believe it or not, I found something worse! Being MIS-diagnosed with type-2 diabetes. I’m actually a type-1 diabetic. [insert my favorite curse words and some insulin here.] You know when it’s awesome to discover said misdiagnosis? When you’re on a long distance bike ride/camping trip! You know what else is awesome? Not being able to breathe because your body is in diabetic ketoacidosis! And best, most brilliant of all? I thought it was because of seasonal allergies. Uhh, can you say *headdesk* ?


The thing is, I knew something was wrong. I felt terrible all the time. I was so tired and thirsty and hungry and I was losing weight way too fast. I was taking medicine and exercising and doing all the stuff doctors told me to do. And there is only so much salad one person can eat. So I gave up.

Not my most magnificent idea.

In retrospect, I should have listened to my instincts and advocated for my own good health. Alas, you can’t unscramble eggs. Here are some useful books I’m reading. Now I’m going to live forever. You’re welcome.

HospitalStayHospital Stay Handbook, Jari Holland Buckland

Being in the hospital is the worst. You get no sleep, terrible food,  and in my case, I had to cry so that someone would let me take a shower. This book actually would be more useful for my husband (or any caretaker), as it’s focused on providing information for patient advocates. It’s scary hearing that your wife could have died and even though I have a living will, it’s a whole new ball of wax when you need it.

TakeChargeThe Take-Charge Patient: How YOU Can Get the Best Medical Care, Martine Ehrenclou

This is an excellent resource for finding a good doctor and dealing with your doctor, insurance companies and all of the other people involved in your healthcare. There are sections on how to be your own advocate and how to prevent (ahem) misdiagnosis, as well as interviews with actual health professionals.

EmpoweredPatientThe Empowered Patient, Dr. Julia A Hallisy

I’m that sick person that wants to crawl in a corner like an animal and be left alone to lick my wounds. However, all that results in is poor care. If you don’t care about your health and well-being, why should a doctor? The chapter on second opinions was illuminating. I could have been properly diagnosed with a simple blood test, but I never thought to ask. There is an anecdote about a young man diagnosed with incurable stomach cancer only to find out (via second opinion) that he had an ulcer! The moral of the story is: Before you let someone remove an important organ (or put you on a boatload of medication) get a second opinion!

LifeYouSaveThe Life You Save: Nine Steps to Finding the Best Medical Care- and Avoiding the Worst, Patrick Malone

Here are a few of the awful, yet preventable complications of diabetes: blindness (that’s the biggie), heart disease, loss of kidney function and feet. Swell! This book explains how to audit the health care you receive, particularly if you have a chronic disease. Written by a medical malpractice attorney, Nine Steps discusses not only the physical aspects of your health care, but the mental, emotional and financial sides as well. The chapters on the drug industry are informative and really, really depressing.

getting stabbed eight times a day, hating the smell of insulin and looking for a pancreas,

My next tattoo?

My next tattoo?


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7 responses to “You’re Just Not My Type.

  1. I am sorry to hear or rather to reading about your health but physically and mentally? May I ask a direct question? Now that you know all these things and you cannot unscramble eggs what do you do now?

  2. Diana

    F*cking doctors !

    • Elliot

      How dare you say such a thing? This is a extremely late reply but your comment just makes me so mad. Doctors saves thousands of people every fucking day. The difference between some normal jobs and being a doctor is huge. Not everyone can be a doctor. If a plumber makes a mistake he can fix it later, but if a Doctor makes a mistake he might ever be able to fix it. Doctors devotes their life to helping others. So use your brain before posting a comment like that ever again.

  3. Steph

    Wow, you had to CRY? I formerly worked as an aide, and I quit because of horrible people (co-workers). But this just made me realize that if I’m ever really sick, I would have to deal with them again! There is no escape!

  4. Matt

    Boooo. I have type 1 (diagnosed as an adult), so I’m familiar with the experience. Here are some books that I’ve read in the last couple of years that have been helpful (and all available from the Carnegie Library, I’m certain, since that’s where I got them!):

    Dan Hurley’s Diabetes Rising is an interesting overview of the recent rise is diabetes; type 2 obviously, but an odd and not really understood increase in type 1 as well. The author is type 1 and so pays special attention to various theories (vitamin D deficiency, hygiene hypothesis, etc.).

    Gary Scheiner’s Think Like a Pancreas, which has some great practical advice on insulin management.

    Thea Cooper and Arthur Ainsberg: Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle. Amazing story of the discovery of insulin, really gripping.

    Finally, maybe think about looking into an insulin pump. I love to ride bikes, and a pump can make that kind of exercise easier to manage, I’ve found. Good luck!

  5. Jeremy

    I too am Type 1. Trust me, once you get your numbers figured out and the insulin dosages correct you will feel SO MUCH BETTER!

    And as Matt said too, look into getting a pump once you have your number correct. It will give you back some of the freedom you lost.

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