Sunday, September 23, 2007

sent our "D" story to Oprah

Clarifying here: I'm NOT a fan, I think I may have watched Oprah about 3 times in my adult life, but I heard about this on the CWD site boards, and I figured if going on national television could help clear up some misconceptions about the type of Diabetes Grace and I deal with, I'd be willing. Here's my submission:

My story begins before I was ever born. My father's father was diagnosed with Type 1 diabetes (also called juvenile diabetes) when he was 16 years old and newly married. He did not live long; in that time home testing supplies were simply not available. He died at 36 after going blind and being confined to a wheelchair, while my father was a senior in high school. I never met him. My father's mother and sister were both diagnosed with type 2 diabetes in following years.
In June of 1991, I was diagnosed with Type 1 diabetes. I went through many years of ups and downs, thousands of finger-pokes for blood sugar checks and thousands more injections of insulin. I credit my mother with handing all the responsibility of the day-to-day management of this disease to me. It grounded me in a way nothing else could have. I remember her telling me that what happened when I was diagnosed reminded her of the Willie Nelson song "Angel Flying Too Close to the Ground."
After marrying in 1999, I knew that if I wanted children I would have to get better control. I got tired of hearing the myths that people still held onto that diabetic women should not have children. My doctor had talked to me about using an insulin pump, which would give me much better control. I started on it and found out we were expecting our first child a month later. Since then I've had several miscarriages and another healthy birth, so we now have two beautiful daughters, Grace and Mercy.
When Grace was 5, she was also diagnosed with the same disease. I think that was the first time I ever realized how my father must have felt when I was diagnosed-- it was scary, but perhaps not as much for me as it had been for him. Treatments have greatly improved, and quality of life for those with this chronic illness has been increased. Grace accepted it very easily because she has seen all her life how I learned to handle it.
We still have many things to do every day-- we still check our blood, we use our insulin pumps to regulate our blood sugars and to coincide with what we eat. We have constant reminders of the disease being a part of us. Many parents of children with diabetes I have come to know use the phrase, "We don't live with diabetes, diabetes lives with us." I find this to be true-- it's an unwelcome guest at every meal, whenever my daughter wants a snack.
I also struggle with not having medical insurance, and finding difficulty in budgeting to pay for my own with our finances. I have been able to continue using my pump through donations I have received from generous people who have upgraded their pumps to newer versions, so they have old supplies they can no longer use. My greatest struggle however comes through not being able to test my blood as often as I should. I've recieved testing strips donated as well, but these get used up much faster, and as a result of not testing frequently enough, I still suffer from some of the typical symptoms of the disease, and am starting to notice more complications arising. I pray all the time for a cure, but I also know that having diabetes has caused me to be a different person I would have been without it, and my daughter and I share a bond through the difficulties we have to endure.

Thursday, September 20, 2007

An actual blog (or: How My Day Was Smashed to Smithereens)

Ahh the joys of days like this... Let me begin for you (actually, before I do, let me warn you that this is LOOOOOOOOOOOOOOOOOOOOONG!).

Awaken at about 7:30 by dh calling me. He told me several things I'll never remember, as I was still asleep. It was nice, however, to have slept in. Grace is sick, though she isn't acting it. She is going to Dr. at 11:15. After chatting with dh a bit and then getting him to bed, I end up dozing for a few minutes next to him. Got up, showered, walked dog. It's now approaching 10, and I decide that since I haven't eaten breakfast, I should go ahead and try to get my elusive blood draw done. I've already been fasting 11 hours by that point, and so I call my Dr office to make sure they have sent the lab order to the lab, located at the hospital. This order would include all kinds of stuff for my diabetes and general health: HbA1C, cholesterol, triglycerides, Thyroid, etc, etc.

Gal on phone says, I will fax it right now! So I immediately pack up girls and go, hoping to get draw done before Grace's apppointment. Get to hospital and man are there LOTS of people there. Right away I start thinking I'm gonna have to ditch this till after Grace's appointment. I decide to wait and see just how long it'll be, so I check in and sit down. I have a pleasant conversation with a teacher from my old high school. He's a teacher I never had, so I have a good excuse to not be sure of his name! But he was kind in reminding me. He turns out to be Type 2 Diabetic, so I go into all the Diabetes stuff with me and Grace. He and his wife seem amazed that neither Grace nor I are angry about her having "D" (as we abbreviate it on any D board you read). Well, you know, I think for her it was just life as she knew it. I truly think Mercy feels left out sometimes, she often tells me that her pink pump is beeping. *smile* I keep trying to tell her she's going to have to pick a different color, so far no one makes a pink one.

Get called to register and realize it's now 11:05, tell the gal I'll be back. Go to G's appt, they get us right through. Strep test, but Dr doesn't even wait for test to finish before saying that's what she thinks she has. She sends us out with the Rx and instructions to just call back if any of the rest of the fam comes down with it (I thank God for Dr's like this!-- none of the rest of us are even her patients!). Back to the lab. Check in again. Go to register and the gal tells me that the order can't be found. She tries calling the office from where it should have been faxed. It's 12:05 and no one is in the office, they're ALL on lunch. I'm starting to steam a bit. At least I know my sugar's ok, I've been checking and honestly I think the stress is making it stay at a good level. By now I've been fasting for over 13 hours.

SO, I can either wait there till 1:00 when the registration gal can talk to someone there, or go there myself to see if I can get it any quicker. By now I can tell that I am starting to function poorly, even if my sugar is ok. It honestly starts to scare me. Not to mention the crushing headache I have since I didn't have my morning coffee (normally only one cup, honestly!). I think I must look slightly drugged; I feel like my eyes are swollen and half-shut. So I made the decision to go to the office.

Got to the office (it's within the Health Department/ WIC office). Never realized that entire office closed for lunch. So we sit and wait. One nice gal who walked by tried helping us. She eventually found the person who would have talked to me that morning on the phone, says she'll be a little late back from lunch. Office opens at 1:00, I go straight to the desk of the gal who said she'd be a bit late. She comes and checks out my stuff on the computer. She sees that the order was first sent in July, I agree, and explain that it has taken me this long to get the 12-hour fast in, as it is nearly impossible for a T1 Diabetic. She notes that they were all canceled about 2 weeks later, which I had expected and I tell her that was why I called and made sure they were faxed this morning. Then she says she can't send the order, only a Dr or nurse can, and there are none in today. I am really restraining myself, because I know it is so completely NOT her fault. Tell her thank you, and get up to leave. Total time fasting 14+ hours. And still no bloodwork. ARGH!

We went straight to McDonald's. I thoroughly enjoyed my double cheeseburger and 1/2 the fries, along with a chipotle bbq chicken snackwrap, and iced tea (that I didn't put enough ice in-- it must have been JUST made and still warm in the brewer!).

Next we drove to Secretary of State-- both licenses needed renewing, and I wanted to make sure to do it before tomorrow just in case the state decides to shut down government offices due to nothing resolving the ginormous state deficit. I remember it happening in another state last year, and I knew that if they at all suspect that they won't meet the Oct. 1 deadline, they won't wait till Sept 30 to shut down government offices! Thankfully, that was quick and quite painless, not counting the $145 it cost for 2 plate renewals. Very thankful dh has the job to pay for these necessaries.

Next we go back to hometown, stop at local store for eggs. Go home, drop off eggs. To pharmacy to fill G's Rx. To 2nd-hand store to kill time before Farmer's Market opens. Go to Farmer's Market, buy some sweet peppers. Got to talk briefly to my Grandma C-- she's getting around nicely with a walker and my Uncle.

Go home, wake up dh, he's going to work early. The rest of the night went pretty smoothly, except that I didn't get to make my planned dinner. Oh well, flexibility is a must as a parent, isn't it? I have leftover potato/corn chowder; girls have sandwiches and bananas, dh has turkey plate from last night's dinner.

I had planned to do the dishes today (really, Mom, I DID!!!). They're still stacked up. *sigh* Ok, so maybe the WHOLE day wasn't a total loss, but man, long about 4:00, it really felt like it!

Thanks for reading my rant, it's now over. :o)

Thursday, September 06, 2007

I'm here, really!

It has been pointed out to me that I have not blogged in a long time.

Here you go Angela.