Two Journeys

My life has been revolving around celiac lately. The only way I can explain it is that I am doing my best to learn as much as possible about celiac and the gluten-free diet as I can before I meet with the GI doctor and start the gluten-free diet.

That being said, diabetes hasn't gone away. It's still here. All the time. Being a total pain in the rear. BUT, I feel like I'm starting a new journey. For many years now, I've been blogging (although inconsistently) about all the things that I deal with in regards to diabetes. All the things that concern me about diabetes.

Now my journey involves living with and coping with TWO chronic illnesses. Both of them invisible, yet such a big part of my life.

Tomorrow is my first appointment with my new gastroenterologist and dietitian. I start a journey of a confirmed diagnosis, learning to live without gluten, and learning to pay even more attention to every morsel of food that enters my mouth.

I have had my pity parties. At least the "pre-gluten-free" pity parties. For now, I'm done. Now, I start the new journey. The new part of my life. It doesn't mean I'll never be sad again. It doesn't mean I won't have pity parties again (can anyone say "diabetes burnout?"). But it does mean that I am going to tackle this, like I have diabetes.

I'll do the best I can. I'll hate it. I'll love the things it brings into my life. I'll hate the things that are no longer a part of my life. I'll have good days and bad days. I'll sometimes be sick because of celiac. Just like I'm sometimes sick because of diabetes.

But just like diabetes had never stopped me, I don't intend on letting celiac stop me either. I'm already out there, online. I'm searching and making contact with others. Perhaps I'll find an online community like the D-OC. A community that will help me get through on the bad days, and will make me laugh and smile on the every day. I'll learn tips and tricks. I'll learn new ways to cook, and to bake (my secret passion) and maybe I'll share those so someone else out there, who has been newly diagnosed with celiac disease, will see that their life isn't over.

This blog has been diabetes for so long. It will still be diabetes, it just might be a bit more celiac for a while. And then one day I'll find the happy medium, and I'll share both sides of my story in equal parts, so others can share with me.

D-Sick Day

I’ve written about the fine line between making people understand how complex and difficult living with diabetes is, while not letting them pity me or feel sorry for me. It is a never ending tightrope. I want to believe that I can do anything, in spite of diabetes. I DO believe that 99.999% of the time. Sure, there are pesky little things like being a pilot or being in the military, but I’ve done so many things in my life when diabetes wasn’t a huge in the “can I or can’t I,” just in the planning of the “I can.”

I’ve had diabetes for 28 years. Many years of living with a disease that factors into every part of my life. But I rarely let it get me down. In fact, I HATE when diabetes slows me down. And it does sometimes. As much as I don’t want to admit it. I will work through d relate sickness, and headaches, and low blood sugars and high blood sugars. I never bat an eye. Or if I do, the normal observer would never notice it as such.

The last time I had a time when I had to stop doing something (form more than a slight pause) or call in sick to work was almost ten years ago…until last week. In the past 5 months, my life has been turned on end. Instead of downloading blood sugars and adjusting basal rates for all the MAJOR changes in my life, I’ve been chasing problems. Fixing lows and highs as they come. Not the smartest thing to do, but for a while it was…. Working? Okay, not really working, but I was going okay.

Last week I was fighting yet ANOTHER low blood sugar. I had a friend over for dinner. I ate, and went low AGAIN. So, instead of testing and treating and testing again, I just ate. And drank. And ate some more. Needless to say, by the time bedtime rolled around, I was in the high 200s. I bloused, plus a little to treat said high. Less than two hours later, I was up again and I was in the high 300s. I bloused again. By 1:00 in the morning, I was nearly 500. I pulled by infusion site and started over. I tested for ketones (there were none, thank GOODNESS!). I was up again at 3:30 and had a “rant” on face book as I was still in the high 400s. I bloused again and went BACK to sleep.

I woke up the next morning sick. I still had no ketones. But my blood sugar was in the mid-200s. I had the pounding headache and I felt like someone had taken sandpaper to the back of my throat. And then I did something I haven’t done in nearly a decade. I called in sick to work. I was already scheduled to take half a day off as I had an early afternoon appointment with my endo (ironic, huh??), but the fact that I had to call in sick to work for something related to diabetes made me angry.

By that afternoon, I was nearly totally recovered. I was blessed to have an appointment that afternoon. After months of craziness, I talked with my nurse practitioner (who I see when I don’t see my endo) about all the changes in my life and about my blood sugars and about the adjustments that I needed to make to (hopefully) get me back on the right road. We talked about my lower a1C and about how I hated how I got there (roller-coaster blood sugars).

I walked out of the office feeling better physically and mentally. But I was still so angry. And hurt. And upset. And disappointed. Because I felt (feel?) that calling in sick because of diabetes meant (means?) that diabetes won. Somewhere in my conscious mind, I know better. But I can’t help the way I feel. I feel like I let diabetes won. Maybe just for that morning. But it won. And I hate that more than I hate anything. I hate it more than the shots, and infusion sites, and finger pricks, and the lows and the highs. I hate it more than I hate feeling bad because of diabetes. I hate that diabetes stopped me, even for a little while.

(Totally related note: Anyone who says diabetes affects only your blood sugar, hasn’t dealt with the mental effects of living with a chronic illness.) 

The World’s Worst Sick-O (Sick-y?)

I’m sick. Real people sick. Not super sick, but I’m feeling icky, coughing, hacking, can’t breath, sore throat, swollen eyes, etc. I felt bad enough (coupled with the fact that several members of my family that I spent time with over Thanksgiving have an upper respiratory infection) that I went to the doctor this afternoon. I didn’t want to risk getting any sicker right now because I’m seriously swamped at work, running up on end of the month deadlines, and I have to sing on Sunday in my Community Choir’s Christmas concert.

I hate being a sick-o (sick-y?). It’s not fun. I whine. I want my mommy and I want to sleep. Basically, I’m a big, fat baby when it comes to being “real people” sick. I find it ironic that I will power through just about anything diabetes related. Even when I feel like crap, but I’m such a baby when it comes to other types of sickness.

I’ve powered through failed pump sites, horrid rebound highs, and most recently DKA, in order to continue doing what I was doing, or what I had planned. I refuse to let diabetes keep me down. I just won’t. I’m sure that I technically feel a LOT worse with some of these things (especially the DKA), but I just keep going.

But when it comes to “real-people” sick, I just want to cry and stay at home. Why is it that “real-people” sick is so easy for me to whine about? Perhaps because I feel like it’s the one thing that I can whine about. I don’t want to show weakness when it comes to diabetes, but “real-people” sick is a whole different story.


And is it just me, or do they go out of their way at the doctor’s office to poke a HUGE hole in your finger when they are taking blood? I swear the whole tip of my finger is sore. In fact, it’s slightly bruised, even though you can’t see it in the picture. Okay, I’m through whining now. I think. Anyone else power through diabetes related stuff & become a total softy when it comes to anything else?

No Fun, No Fair

As most of you probably know, I'm a huge fan of live theatre. It's so wonderful to get to see a show, especially if it's one you've been wanting to see for a while. Today I went with a couple of friends of mine to see a show in Nashville. Nashville is about 2 1/2 hours from me, so it was basically an all day trip.

This morning I got up and it was full diabetes change time. Basically, new pump site and new CGMS sensor at the same time. This happens occasionally, and MOST of the time, nothing bad happens. I changed my site, changed my sensor, grabbed a granola bar and headed out. My blood sugar was around 126, so I wasn't worried about driving or about anything else d related.

I noticed about 2 hours into my trip that I wasn't feeling that great. I suspected my blood sugar was high. When I stopped to test, it was. Over 350. I kind of flipped out at this. I bolused a LOT. It gave the insulin and I continued the rest of my drive into Nashville, as we were supposed to be meeting another friend for lunch before our show.

When I got to the restaurant, I tested again and was over 400. At this point, I feel like crap AND I'm sure that it's my pump site. But HOW??? If I have a kink, I get a "no delivery" alarm. I hadn't gotten one!

I grabbed my spare infusion site and headed to the restroom to change it. When I pulled it out, it was MAJORLY bent. Like, almost all the way over. This SHOULD have given me a "no delivery" alarm. But it didn't. At this point, other than being sick, and annoyed, there isn't a whole lot I can do. I wasn't going to miss my show. I gave an injection, put in the new site and went out to wait on my friends.

My stomach was bothering me and I knew I wasn't going to be eating anything at all for lunch, but I was drinking a ton of water and one of my friends got the bread, while we waited on the other friend. It was a garlic cheese bread, which I normally love, but my stomach was such a mess it made me feel even sicker. My other friend showed up right about the time I realized I needed to RUN (read: sprint like a crazy person) to the bathroom when I proceeded to throw up. And up. And up.

It kind of freaked me out. I haven't EVER thrown up from a high blood sugar that I can remember. My mom says I got sick once as a kid, but I don't remember it (thankfully). I had a couple of choices. I could go home (which meant I was not only wasting a ticket to a show, but ruining it for my friend who road down with me). I could go to the hospital (but what are they going to do, really??). Or I could tough it out. Take some more insulin. Drink some more (a LOT more) water. And go see my show.

I will admit, I felt better after my trip to the bathroom. I drank water the entire time we were at the restaurant. I had a head ache, but it wasn't anything I couldn't deal with.

I am glad I chose to tough it out. I wasn't at 100% at all today, but I managed to do okay.

After my long drive home, I'm sitting here being thankful that it wasn't worse. Wondering why my "no delivery" alarm didn't go off. And wondering what to do about the ketones still floating around in my body (I checked them when I got home. They were between small & moderate) when my blood sugar is basically back in range.

I still have a headache. My throat hurts from throwing up. And I think diabetes is a pain in the rear. I HATE that diabetes almost ruined my day. I hate that I had to feel like crap all day. I hope a good night's sleep will solve all my problems. 

Also, I hope I NEVER have to throw up from a high blood sugar again. It is NOT fun. Throwing up in general isn't fun, but knowing it was the cause of diabetes made it that much worse.

Complicated Diabetes

When you have diabetes, there are times that everything feels more complicated. It's something that I, myself, try to hide from most people. Those living with or caring for people with diabetes know better. They know the truth.

A trip out of town requires more packing.

A job requires more questions (do I get paid time off, or sick days? What's the insurance coverage like? How much does it cost?).

Grocery shopping requires more items (juice boxes when there are no kids in my house? Yup. That'd be me.).

What's for dinner? (That could require a quick change in menu, depending on current blood sugars.)

A budget requires more planning (I have a whole section dedicated to medications and doctor's co-pays).

Going back to school full time? Probably never going to happen, unless I marry someone with fantastic health insurance (any takers??).

Sickness comes knocking? There's more than just waiting for it to be over. There's ketones and doctors and dehydration and things that a "normal" person would never think about.

And though I've not gotten there yet, even having a child requires more planning than a "normal" person would have to deal with.

In a lot of ways I feel like diabetes made me grow up much faster than I might have if I'd never been diagnosed with diabetes. I've always been seen as fairly responsible and in control of things. At times even been considered the "good kid" in my group of friends or my family. In fact, when I ran into my former pre-school teacher a few years ago, she told me that shortly after I was diagnosed (while I was in her class), I was already telling her what I could and couldn't eat. She said I knew, even then, what to do.

There have been many times I've wondered what I would have been like if I'd never been diagnosed with diabetes. It's a foreign concept to me. Would I have been irresponsible? Would I be a totally different person than I am now? Would I have joined the military? Would I have gone back to school already? Would I have picked a profession based on what I liked, and not on it's ability to provide me a stable income and health insurance? Would I already have children?

There are so many unanswered questions. None of which I'll probably ever know the answer, because for whatever reason, I WAS diagnosed with diabetes 26 years ago and I haven't really known life without diabetes.

I can appreciate the things that diabetes has brought into my life. I've met some of my best friends because of diabetes. None of them I would have met if we didn't share a busted pancreas. I've taken trips that I never would have taken, if it weren't for diabetes. I am unsure I would have entered the world of blogging if it weren't for diabetes. And twitter...that's laughable. I'd probably be one of those anti-twitter people, instead of having TWO accounts.

So, diabetes has made my life more complicated. That's a fact. But it's also taught me a lot of lessons about health, life, and friendship, and blessed me in more ways than I can count. Complications (not the health kind!), I can handle. Diabetes, I can deal with.

Happy/Sad

Lately my life has been in upheaval. I've been traveling a LOT since January and I was actually gone as much as I was home in July. It's not work related, and I've enjoyed myself greatly....but sometimes, no matter how hard we try, life and circumstance conspire against us.

Depression and anxiety are things that I've never been formally diagnosed with, but I know I've dealt with at many times in my life. Prayer, good friends and family, and counting my blessings most often help me out and the time passes, usually fairly quickly. In fact, I hadn't had an issue in a couple of years until a little over a month ago.

I recognized the signs of depression in myself after a couple of weeks. I've waited for it to pass and kept myself busy, but it's lingering a little longer than normal this time. It's not to say I don't have good days, or good times. I do. Many of them.

In fact, just this week I went to my endo appointment and found out that despite all my travel and instability, my A1c is back below 7 AND I've lost some weight (not much, but still). But on the flip side, I'm being put on cholesterol medicine again, after being off it for a couple of years.

I thoroughly enjoyed Roche Summit and had such a fabulous time while I was there. Just last weekend, I took a VERY quick day trip to New York that also filled me with happiness and joy.

But, I notice things. I'm more tired than normal. In the quite moments at home the helplessness and hopelessness sneaks in. I want to cry, but I can't find the energy or the time. There are times when I just want to crawl right out of my skin.

I know how blessed I am. I know how much I have to be thankful for. I'm blessed beyond measure. But sometimes it's more than a state of mind. My mind tells me one thing, and my emotions tell me something else.

My first plan to tackle this is to keep on praying. God has gotten me through so many things in my life and I know He won't let me down. Next up, I'm not going to isolate myself. By keeping in touch with my friends (both online and off), I am keeping myself both busy and happier. After that, I don't know. I'm hoping this, like my other experiences, passes quickly. But I do want to thank the D-OC for making me less afraid to seek professional help if I need it. Knowing that others have done it gives me the courage to know I can too, if I need it.

Mostly, I'd like to ask you to keep me in your prayers and to keep me accountable. Tweet me. Facebook me. Don't let me wallow, when I have so much else to be doing.

Being Sick Sucks

Being sick sucks. Bottom line. If you get sick as a “normal” person it sucks, I’m sure. If you get sick with diabetes, it really sucks. I’m typically a fairly healthy person (diabetes aside). I usually don’t get more than a cold a few times per year. In fact, until this winter, I hadn’t been to the doctor for actual sickness since 2007. Yup. You read that year correctly.

But this winter has destroyed that lovely record. Since December, I’ve missed a total of 6 days of work for sickness. I’ve been to the doctor twice. Including this past weekend. Thursday morning I was feeling a little crudy. I thought it was allergies, so I started with the over the counter allergy meds. Friday morning I couldn’t talk. I had coughed so much (and gotten so little sleep) that I already knew that I wasn’t going to be able to work.

I went in for long enough to let my boss know that I couldn’t talk and to be sure to get all my appointments rescheduled, but I left there after half and hour and took off for the doctor’s office. They didn’t do a strep test, but I got antibiotics and cough syrup and headed home to rest.

By Saturday morning, I was pretty darn sure (strep test, or no strep test) that I had strep throat for the first time since I was in high school. Probably about 15 years ago, to be honest. My throat was killing me. I couldn’t talk above a whisper (actually, its Monday afternoon as I’m writing this, and I still can’t talk).

And then the blood sugars. Oh the blood sugars. Saturday about noon I pulled up my pump graph for the past 24 hrs. There wasn’t a single reading below my high marker on my cgms (my high marker is set at 170). Not a single one. I was even running on a temp basal. And it still wasn’t doing any good.

My mom was a saint. I asked her to pick up a couple of things for me at the store and she went above and beyond. I have enough sugar free jello & popsicles to last me for a while. She also kept checking up on me. I know she was worried since I’m living alone again.

Sunday night I thought I might be able to go to work. I couldn’t talk, but I thought I could work on paperwork. But Sunday night was a cough fest again and I got almost no sleep. So Monday was another sick day again. I’ve basically not been out of pajama’s for four days. I’m praying and hoping that Tuesday (the day I have this post planned to go up) is a better day. I really, really, REALLY need to get back to work. It’s hard for me to get caught back up when I miss so much time at work.

It’s times like now that I truly hate having diabetes. I fully believe that if I had a functioning pancreas that I would already be on the mend. But I can’t. Being sick means taking longer to get better. And it sucks. Perhaps I’m having a little pity party for myself because I’m never sick.

Perhaps I just feel crappy and I want to complain a little. But right now, diabetes sucks. And as we like to say on Twitter #duckfiabetes