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.
Hospital 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.
The 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.
The 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!
The 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,