A Guinea Pig Sound, If I Could Make One, Would Go Here

Joining a study that's taking place in Ogden. Getting screened on Monday, and if my labs fit the criterion, then I go back later for 2 weeks to get infused. Should be interesting.

If nothing else, I get to go up to Utah over conference weekend sans kids and hang with my fam. It will be totally fun, but totally cold. I hate cold. I thought April was too late for the cold?

I'm sure I have long sleeves around here somewhere....

You'll Live a Long Life With Some Good Days

People didn't used to tell me I would live a long life. It was just kind of assumed. People didn't used to tell me to make sure and "enjoy my good days." It was just a given that most days were good, or supposed to be, anyway.

It disturbs me that this has changed. It disturbs me a lot.

"Enjoy your good days!" translates to "Because you'll have a lot of crappy ones."

"You'll probably live a long life" translates to "Hopefully you won't die at 60."

It's like an old episode of The Cosby Show where Claire has a birthday, and everyone is telling her "What are you complaining about? You still look good." She hated that word STILL. They used to just say "You look good." Why was the still in there now? Because she was older, and the expectation has changed.

That's me. The expectation has changed. "You'll STILL live long." If my lifespan was discussed at all, it was expected that I would live long, given that all my grandparents lived well into their nineties. Oddly enough, though, it didn't come up in normal conversation. Now it's all the time. "How are things going? Well, I'm sure you'll still live a long life."

I guess it's better than people telling me I'll probably drop dead at any second, like so-and-so with diabetes. ("Boom. Just dead in his dorm.") Oooohh, thanks for that lovely, uplifting story.

I had another education class, and asked about the fact that twice this month, I've woken up with high sugars. She told me it was probably the Somogyi effect, and that my liver was doing everything it could so I wouldn't die. To which I say: Thank you liver. Pancreas? Screw you.

Seriously, last thing as class ended - "Remember to enjoy your good days! "

For the diabeticially aware: My sugars before I went to bed was 78, so I ate a Starburst before going to sleep so I wouldn't go too low. And I did test last night at 2 a.m. 63. Crappity crap crap. Ate a starburst and fell back asleep with sugars at 95. Fasting sugar this morning was 76. I'm thinking my Lantus dosage might be a little high? Although usually I am in the 100s when I go to bed, and only twice this month to be high in the a.m. doesn't seem like a lot, but maybe it is. Just when I think I have a handle on this thing....

Anyway, I'm sure I'll still live a long life and I'll have to remember to enjoy those good days.

It's Allergy Season

Hey can allergies mess with your sugars?

He Loves Me!

Saw the endo today. He said he wishes all his patients were like me. Hee Hee. Say it again, doc! I will say, though, that my sugars have been really good lately. Can you say "honeymoon?" Let's not say it out loud, though, might jinx it.

He's going to try to get me into a study, if one can be found nearby. His brother apparently is a bigwig in the JDRF,so he's going to talk to him about me. He left his brother a voicemail while I was there about getting me into one of the studies that do islet cell regeneration, or one that suppresses the immuno response somehow. Anyway, I'm doing well. So whew.

In number news, he didn't run an a1c, but I'm eagerly awaiting that in 6 weeks time. He did tell me that my GAD antibodies were at 199. Normal is 1.4. Um, hello. So there's really no question about it being my immune system - this ain't no Type 2, baby. But we knew that.

Also, some random lady at Curves starting telling me all about her brother who died of a diabetic heart attack at 54, and how if I don't take care of myself, all my organs will fail. Gee, thanks. I'm realizing that random stories about strangers I will never meet are all a part of my "new normal". I guess that's OK, I mean, hey, whatever, but if I'm a bad mood, all bets are off. Then ramblings about your uncle's sugars will tick me off, and I will eat you alive.

I think people with infertility issues deal with this, too, and I'm guilty on the other end of that one, so I try not to let the stories bother me. (Hey, sorry, fertility issues people, if I've bothered you with my ramblings about people I know.) I think really, people with ANY health issue have to deal with random anecdotes, so I just listen and nod, take any new info (if offered) and then blog about it. So there. Anything you say can and will be used as blogging material.

Especially you, doc.

Edumacation

Went to a diabetes education class today - I know you're all feeling the excitement. Woo!

Anyway, I should have been going the last 2 Saturdays too, but I haven't been, the 1st one because the referral wasn't there yet, (and why should I pay for it when my insurance will?) and the second because, um, well, no good reason really. I can make them up the 1st 2 Saturdays in April, though. I probably will. Most likely. Maybe.

THIS one went over all the lovely complications of diabetes. It was so heartwarming, I could barely control the tears of joy that wanted to flow. I mean, really, is there ANYTHING diabetes doesn't screw up? Your spleen, maybe? Gall bladder? Your eyelashes? Do your eyelashes stay the same?

The gal encouraged us to get a blood pressure cuff, and she might as well have put neon lights flashing everywhere stating: CONTROL YOUR SUGARS. Not new information, really, I know I have to control my sugars, but all the icky pictures of icky things happening would have motivated Gandhi to quit fasting and eat some protein. (Although strangely enough, there were a lot of cartoon organs shown during the presentation, I guess they help tone down the DOOM that can become your diabetes diagnosis.)

Most of the education is geared for Type 2, seeing as how most diabetics are Type 2, but you know what? The treatment may be different, the cause may be different, but the complications are the same. So it was good.

Moral of the story: High Blood Sugar = BAD. Just remember that.

Just a Spoonful of Splenda

I remember one of my first "diabetic" meals in the hospital. It consisted of french toast with sugar free syrup, unsweetened iced tea, and cream of wheat. Since I can't stand french toast or syrup of any kind, (oh, the gagginess) and I don't drink iced tea, (I sent it back and asked for a Diet Coke) I attacked that cream of wheat with a vengeance. I took a huge bite, and then gagged as I tasted the unsweetened nasty goo. But I was SO HUNGRY, (they hadn't been feeding me, telling me the IV would take care of the hunger - yeah, whatever) and the smell of that horrible french toast was just making me gag worse, and so I hopefully picked up the artificial sweetener that had so generously been provided, poured it on the cream of wheat, and tried again. Now it tasted like nasty goo with chemicals added. Mmmmmmmmm.....SO much better. Diet Coke. The breakfast of hospitalized, diabetic champions.

So I've learned a few things.

First of all, sugar free Jello is a NON-FOOD and it is disgusting. I still eat it every once in a while, though.

Second of all, I found an artificial sweetener called "truvia" that I think tastes better than Splenda, but Costco sells Splenda with coupons.

It's a good thing I already liked diet sodas and Crystal Light.

"Free food" has a completely different definition for me now.

Eating protein with every meal helps a TON. Covering the carbs for oatmeal eaten without an egg and oatmeal eaten with an egg yield two very different results. I'm still not sure what to do if I don't have protein available, though. More insulin? More activity? Anyone have advice on this?

Also, pizza is the devil. Too bad, too. I like pizza.

Fruit seems to send my sugars flying, too, even when I think I've covered it accurately. Advice on this would be helpful, too.

So, I still have a few more (million) things to learn.

My kids have learned I have Starbursts on me at all times. They think this makes me a much, MUCH better mother.

My $100 Mistake

One of the things that really concerns me is how dependent I am on two tiny little bottles. Bottles that I can only get one at a time. Bottles made of glass. Bottles labeled "Novolog" and "Lantus."

I refilled my insulin prescriptions on 2/27 (Friday). The next Wednesday, I took my Novolog out of the fridge for my lunch dosage, dropped it on my kitchen floor, and swore when it smashed. What was I supposed to do NOW?

Called the pharmacy. They said they would fill a new prescription if my doc called it in, but getting it paid for by insurance was another matter. Called my endocrinologist. Closed for lunch. Called my PCP. Closed for the afternoon. Oh lovely. They always take Wednesday afternoons off, for reasons I don't even want to explore. Why Wednesday? Why the afternoon? Why do I keep thinking about it when I know it's making me crazy?

So -- ate some no-carb snacks (more cheese, anyone?) and waited patiently for the endo's office to reopen. In the meantime, called my insurance company and asked if they had a policy for lost, broken, or stolen prescriptions. Based on the title of this post, I'm guessing you know the answer. Yeah ---nope.

Got ahold of the endo around 2:30, got to the pharmacy by 4:00. They didn't have the scrip. I was like "THEY DIDN'T CALL IT IN???" "Oh, they did, but your insurance..." "Look, I know the insurance won't pay for it. It has to be out of pocket." "Well, that's going to be kind of expensive.." I wanted to reach across the counter, take him by his little white jacket, and start shaking him whilst shouting "DO YOU KNOW ANYTHING ABOUT TYPE 1 DIABETES?" I mean, hello - insulin. Not optional. My mood was probably not helped by the fact that I hadn't had a real lunch, and we were fast approaching dinner (although amazingly enough, by the time I got around to eating "lunch" at 4:30, the sugars were still in the normal range. Let's hear it for almonds, baby!). I was very proud of myself in that I did not shake him, I just said "Yeah, I know it's expensive. Still need it, though." He said to give him a couple of minutes, and bing-bang-boom, I'm $114.00 poorer but in possession of my life saving medication.

So now I'm totally freaked out. What if I'm mugged and somebody steals my purse containing my insulin, and it happens to be after pharmacy hours? What if it breaks again? What if I'm traveling and it gets lost or something? I mean, everything I've read about diabetes and travel says to take extra medicine with you in the event of the unknown. I can't seem to GET any extra medication, so how do people do it?

Why won't my insurance fill it early? (Liability. Cost. Stupid reasons.) They wouldn't even fill my test strips 2 days early. Yeah, like people are abusing blood glucose testing supplies. What a market those suckers have on the street.

I keep thinking about the people in Hurricane Katrina that had to live without power for weeks or were forced into the superdome for days at a time. I mean, there had to be diabetics among them, right? What did they do? In the event of an emergency.......what? I want insulin in my 72-hour emergency kit, please! How do I get it?

But You're Not Fat!!

When I started telling people I was diabetic, I began to notice a theme in people's response. It usually ran along the lines of "you are the last person I thought would get that!" "But you're not heavy." "If you had eaten better, maybe...." "But...really? Are they sure? You don't look like you would be diabetic."

People. Type I. Type II. MAJOR difference. Type 1 cannot be prevented. It can't be cured. The cause is unknown (although there are theories). Your immune system just goes wacky. Stupid immune system. Type 2? COMPLETELY DIFFERENT. Whew. Glad I got that off my chest.

I don't blame people for not knowing, I mean, hey, why would they? I didn't know until I got diagnosed, because looking up differences in random diseases was not really one of my favorite pasttimes. (It is now, though.) Approximately 90% of diabetics are Type 2, and most of the stuff out there is for them, so assuming my diabetes can be managed with diet and/or pills is not an unfair assumption.

So, I'll just tell you -it is not managed with diet or pills. It is managed with shots, 4 times a day, and carb counting at meals. Maybe one day I'll get a pump, or pens, but the shots are working just fine for now. It is managed, though, and I'm grateful beyond words that it can be. I have no desire to go blind or to lose random limbs. I do look forward to the day when it is just a pill, or when a cure is found, and diabetes is a distant memory. Can you imagine? One day I'll just be sitting around, eating whatever I want, saying "Remember when I had diabetes? That sucked."

My Diagnosis

OK, then, what better way to start off a new diabetic blog than with the story (however simplistic it may be) of my diagnosis? Yes? Good? Who cares what you think, I'm doing it anyway.

My story IS very simplistic. I had all the classic symptoms. I was dying of thirst, could NOT keep liquid in me, and started getting blurred vision and losing a little weight. People started wondering if I had an eating disorder (they told me this after the fact). The vision was the most annoying, the thirst was the scariest.

Unfortunately, the last doctor I had gone to was a complete MORON, so I didn't really have a PCP that I liked. So what do I do, but pull up my insurance plan, pick a name, and call. Because, really, have you ever Googled "frequent thirst" and come up with anything that does NOT include diabetes? There's just nothing there. It's pretty basic.

I go in, pee in a cup, and the doc walks in with, and I quote "You're diabetic, by the way. Type I. No question." (Apparently they checked my ketones, and they weren't good.) Oooh, way to put it gently, doc. He then starts listing "leading cause of blindness...blah blah blah" while I'm just staring at him. He stops mid-rant -- "Are you OK? I just kind of threw that at you." Um, yeah. You did. And am I OK? I have no idea. The world just tilted a little. I'm not surprised, per se, I was pretty sure I did have it, after all, but thinking you have a non-curable, life-threatening illness and being told you have one are two completely different things.

Then he tells me I have to get into an endocrinologist that day or else he will check me into the hospital. Ohh, boy. The hospital. His nurse starts calling around to various endocrinologists asking if they can take "a new Type I diabetic." Oh, sure - in a few months. I stopped her. "Listen, I don't mean to be rude, but the way you're phrasing it sounds like you have a Type I patient who's been managing this for months or years and just moved here or something. You need to tell them - 'You need to see her or she goes into the hospital. Use that term - hospitalized.'"

So she did, and calls back the one who my PCP originally wanted, and they said OK - two weeks, but wants to see lab work, stat. So the next day, I get a bunch of blood work done in the morning, and by that afternoon, I am checked into the hospital, there to be tortured by a roommate who loved her TV and a student nurse who couldn't put an IV in to save my life. But that's another post.

Blood sugar on admittance: 355 - A1C-12.2