Sunday, 11 September, 2011
I still wince.
Every single time.
Not for fingersticks, but for the infusion sets and CGM sensors. It’s like a reflex. I can’t help it. It’s like a preemptive wince. Like if I just go ahead and wince, then it won’t hurt.
Sometimes it hurts. Especially that big effing harpoon of a CGM needle. And sometimes, it doesn’t hurt.
But the potential for it to hurt is there every time. Last night, I stood there. Quick-set in the Quick-Serter, locked and loaded, pressed against my side. I put my finger on the grey buttons that will send that needle into my skin. My stomach tightens. I take a deep breath.
I tell myself, “It’s ok, this is not going to hurt.”
My fingers sit on the buttons, hesitant, not wanting to push them. One more deep breath, and I force my fingers to squeeze. The needle shoots in.
And this time, it doesn’t hurt. My breath releases, and I pull the needle out, prime that cannula, and go back to my life.
I have had Type 1 Diabetes for 18 years. I have been using an insulin pump for 14 years, and my CGM for almost a year.
“Aren’t you used to this?” you may be thinking.
Yes, yes I am. Set and CGM changes are part of my routine. As routine as these needles are, that doesn’t mean it’s easy to stab myself every few days. The potential for pain is always there. Sometimes, when you hit just the right spot, it hurts so much the tears and stream of profanity start immediately. The needle is ripped out and thrown on the ground, and I cry and put pressure on the insertion site, because there’s a good chance it’s a gusher.
Thankfully, this doesn’t happen very often, but it’s hell when it does.
And so I still wince, every single time.
Friday, 12 August, 2011
So I have been bugging my mom for a while to write a guest post for my blog. And she emailed me this last night! Yay! As you would expect, my mom remembers my diagnosis differently than I do. Here’s what she remembers:
Precious Jessica’s diaversary. WOW – eighteen years – really? My memories of her D diagnosis are somewhat different, yet the same. I have a lot of trouble looking at those pictures of her 10th birthday. WHY didn’t I know? But can’t really go there – need to spread the guilt around some – not use it all up at one time…
It was Friday, August 13th, and we had gone to her well check up. We were told that Jessica’s bgs were elevated (via dipstick) so we went for a blood draw. The call came at dinner, from the doc himself. “Jessica’s bgs is 597. Which hospital do you want to take her to tomorrow?” WHAT? We had no health insurance and my husband was unemployed. I spent a sleepless night on my face before God, pleading for His help. Just how was this going to work? GOD – that’s how.
At the beginning of that summer, I’d gotten a part-time job at a home infusion company. After Jessica’s diagnosis, that same company GAVE us all her insulin, syringes, alcohol wipes. ketone strips, glucagon – everything we needed except the test strips. And that continued until we got health insurance. God.
For the next 8-9 years, the local children’s hospital worked with me to let me pay for her quarterly endo visits, meters, test strips, etc. at a pace I could manage. And if you could have seen my checkbook – you’d know Who it was. God.
My husband – who is deathly afraid of needles – cooperated when I told him that Jessica would be ‘shooting’ us as often as she wanted to. God.
Staying in Jessica’s hospital room, while she flitted around, making friends, learning about how to take care of her D, playing games. I wasn’t allowed to leave – but she was hardly ever in the room – my social butterfly. God.
Jessica’s room and floor mates: her roommate who had been in the hospital for more than a year after a serious car accident left her w/spinal cord injuries; the little girl next door who screamed all night long; the CF kids who had to be cupped and whose prognosis wasn’t good; the kids with cancer. Perspective. God.
Two seizures in the middle of the night. Jess’ room downstairs, ours upstairs. How did I know to get up and run downstairs? God.
Jess has only been hospitalized twice. Her initial diagnosis and when she got her pump. God.
After dinner Thursday night, Jess sat down next to me and said “Saturday is the 13th.” August 13th. Eighteen years. Amazing. God.
Thanks for the beautiful post, Mom. And thank you for taking care of me for so long. I love you!
Sunday, 12 June, 2011
So things in my life have been kinda crazy lately. Not crazy in a bad way, just insanely BUSY! But there are a few things I wanted to share.
First of all, last weekend was Cheriseapalooza! Yes, Cherise, creator of DSMA, came to town and we had an epic meetup! Bob was there, and Scott, also Barb and Jon. And even Kim came down for the weekend! And yes, somehow I forgot my camera…
We ate BBQ and cupcakes (which I made, thank you very much). There was serious talk, but also a lot of laughter. My stomach hurt when I left from laughing so hard! It was amazing to hang out with all these wonderful people! To see in real life these online friends who feel like family.
Also, Kim came down a little early so we could hang out. We got some yummy iced coffee and talked about all kinds of things, both D and non-D related. And it was wonderful.
One of the things we talked about was Kim’s project that launched yesterday, the You Can Do This Project! I watched the video and turned into a blubbering mess…
Go to Kim’s site to see the original post, as well as links for videos others have already made!
I needed to hear this so badly. Hence the blubbering. This week has been exhausting. And I really just want my sugars to behave because I’m too tired to deal with all of it. Can I have a day off? Please?
And then I see this video, full of familiar faces, and I know they understand. I know that if you or a loved one has diabetes, then you understand. And I’m getting all teary-eyed typing this.
I can do this. You can do this. We can do this.
In our lives with D, we all carry around A LOT of stuff. I’m not going to list everything out for you right now (that’s coming in a later post). But there is an atypical item always rolling around in the bottom of my purse.
3M Transpore tape.
Allow me to explain. Since I started wearing CGM back in December, I have tried it in various locations on my stomach, back, and butt. No, I haven’t worked up the nerve to try it on my arm.
The spot that seems to work the best is my butt. Especially the side butt (stop and read Jacquie’s post please–hilarious!). The problem is, my jeans really rub this area a lot. I always use IV3000 tape to hold down the sensor and transmitter initially. But after a day or so, the tape starts to come loose thanks to my jeans.
Hence the Transpore tape. It holds that sucker down. And not even my jeans can pry it loose.
It was a happy accident that I discovered this. Not long after I started the CGM, I was in my mom’s office, my tape had come almost all the way off, and I didn’t have any more. Luckily, my mom had some Transpore tape in her desk. It worked beautifully.
So it’s always rolling around at the bottom of my purse. Thank you, Transpore tape
*3M did not ask me to blog about their product. They have no idea I’m writing this. I just wanted to share something that works well for me with all of you.*
Saturday, 11 June, 2011
So yes, I am still alive, in case anyone was wondering! My summer schedule has been CRAZY! Fun, but crazy and exhausting.
And I’m finally writing some thoughts down here that I’ve been processing for a while. I had kind of a moment of enlightenment, per se, last week.
I was talking with Elisa on Twitter. We both recently came out of periods where we didn’t really take care of our D. And I asked her how it’s been for her to transition from not really taking care of herself to trying to get a handle on D. And it was a great discussion.
And I’ve been thinking about that conversation all week. And I realized that I am transitioning too. And that I need to be more patient with myself. As Scott said in his You Can Do This video, it’s ok not to be perfect. I’m trying to remember that.
I’ve posted about some of this before. I spent years eating whatever I wanted, with my blood sugar running mostly in the 200s and 300s. I now realize that I was depressed.
My epiphany was that I am still living in transition. After I found the DOC back in November, I counted everything I put in my mouth, I exercised religiously, I was excited about taking care of myself.
This only lasted a few months. Then reality set back in. It was overwhelming. Going from not caring at all what the number on the meter said to caring too much. It was a shock to my system.
I have food issues. I struggle with emotional eating. I am doing better, but it’s hard! I wish it was something I could just turn off. But my food issues aren’t going to disappear overnight. Although I REALLY WISH they would. I really have trouble when my bg high. My brain says, “I’m high already, what the hell? Might as well pig out.”
I am working on my food issues. It is getting better, slowly but surely.
I’m still trying to figure all of this out. I can do this. I am starting to believe that. But progress, not perfection, needs to be the goal. I am not perfect. I am never going to be perfect. And that’s ok.
I can do this.
Thursday, 12 May, 2011
Today’s Prompt: Having a positive attitude is important . . . but let’s face it, diabetes isn’t all sunshine and roses (or glitter and unicorns, for that matter). So today let’s vent by listing ten things about diabetes that we hate. Make them funny, make them sarcastic, make them serious, make them anything you want them to be!!
There are a lot of things I hate about diabetes. A LOT. Right now, I’m coming of off a wicked low of 55. For me, anything below 60 is not pretty.
I’m so mad right now. I should be in bed, but diabetes had other plans. Rather than sleeping, I’m up late writing this post.
Instead of a list of the ten things I hate most about diabetes in general, this is a list of the ten things I hate the most about diabetes right at this very moment.
Ten things I hate about diabetes (as of 11pm on Wednesday, May 11th):
1. I hate that I had to put off writing this post because of the low.
2. Diabetes, I hate the way you make me feel when I’m low. How you stop me in my tracks. My brain turns to mush and I can’t function. I hate that.
3. I hate how I feel like I must eat the entire kitchen after a low like this. Why can’t a juice box and a small snack be enough? Why do I go crazy and drastically overtreat? I hate that I just ate three muffins, Reese’s Pieces, dried fruit, and two vanilla sandwich cookies.
4. I hate that I am now sitting here feeling tremendously guilty. Why did I just eat all that crap? Why? This was stupid, Jess, stupid! I want to cry. Why on earth do I do this to myself? Guilt, guilt, and more guilt. Ugh!
5. I hate that I am now doing some intense D math, trying to figure out how the hell to bolus for all the food I just ate. Should I round it up to an even 100 carbs? Was it more? Less? Dual wave or straight bolus with an increased temp basal to handle the fat?
6. Diabetes, I hate how you make me afraid. Because I am afraid. I’ve mentioned before how nighttime lows scare me more than anything else in the world. I hate that I will likely underbolus for my overtreating because I am so scared of going low at night. Yes, I have the CGM. But I am still terrified.
7. I hate how I am now officially on the glucoaster. I am. Thanks to the low and subsequent overtreatment. And thanks to my fear of going low again, I will wake up high. I am willing to bet you all my earthly possessions that this is going to happen.
8. Speaking of high, I hate how you make me feel, diabetes, when I’m high. If my beeping CGM doesn’t wake me up later, my high bgs will. I hate waking up drenched in sweat. I will know instantly that I am high. The headaches, the extreme thirst, the extreme grumpiness. I don’t relish starting the day in that fashion.
9. I hate how you will be the last thing I think about before I go to sleep tonight. And you will be the first thing I think about when I wake up tomorrow morning. It’s the same, every day. Just once, I would like to think about something else in those moments.
10. I hate the worry that you, diabetes, cause the people who love me. It wears on them. My husband sees me sitting there, low, unable to do anything about it. He watches me struggle with the straw for the juice box before he takes it and opens it for me. He listens to my blubbering attempts to talk to him with low brain. I hate how it will make him feel when I tell him about my overtreatment tonight. He needs to know in case I start making funny noises in the middle of the night. He will be as scared about my blood sugars tonight as I am. He will watch me deal with the rebound high in the morning. He will put up with my grumpiness. Because he loves me. And I love him. And I HATE diabetes for doing this to him too. Diabetes, do whatever the hell you want with me. But leave my husband, as well as my parents, out of it. Please.
Today’s Prompt: Pick a type of blogger who is different from you and tell us why they inspire you – why you admire them – why it’s great that we are all the same but different!!
I LOVE reading other Dblogs. It’s kind of a problem. Any break in my day will find me sitting in some corner, phone in hand, Google Reader open. I find it hard to keep up some days, which is a great problem to have!
I have learned a lot from my fellow D-bloggers. But I feel like I have learned the most from the parents of children with diabetes out there. Especially the D-mama bloggers.
My mom did most of my D care when I was a kid. I’ve already written about my amazing mother here and here. I know that my diabetes was emotionally and physically taxing for her. It had to have been. But she never let me see any of that.
Only now am I beginning to appreciate all the sacrifices she made for me over the years. Through reading blogs by some of the awesome D-mamas (and a few D-poppas) out there, I am starting to see things she hid so well. The fear. The exhaustion. The physical and emotional tolls of caring for a diabetic child.
But these blogs also tells stories of triumph. Of joy. Of hope. I treasure all these stories from the D-mamas. Because of these stories, I’ve started talking more with my mom about what it was like for her.
So to all the D-mamas and poppas out there: YOU. ARE. AMAZING. You CWD is so blessed to have you. Someday, they will be able to look back and say thank you. I am thanking you now, for sharing your stories, the good, the bad, and the ugly. You make me laugh and cry, sometimes in the same post.
Sunday, 10 April, 2011
Ok, we are on to day two of the Health Activist Writer’s Month Challenge. So far, so good. I think I can do this.
Btw, it’s GORGEOUS outside, which is why I’m just now getting this written. I love spring!
Ok, Jess, focus! Today’s prompt involved expanding my vocabulary: “Go to Dictionary.com and check out their their extensive archive and pick any 1-3 WOTD (one from your birthday, perhaps?) that you didn’t know beforehand and write inspired by the new word(s)” (WEGO Health Blog).
It also gave the option to go old school, and open a dictionary to a random page and pick a word. I do have a real live dictionary around the house…somewhere…hmm…where is that thing…
Oh well, I’ll just use dictionary.com.
Today’s word is unctuous (no, I’m not going to tell you what it means, that’s what the link’s for).
While I could have made that word work, I decided to do some more exploring. I went to the archives and looks at some words from previous birthdays, and none really struck my fancy.
Then I thought, why not look at my diaversary (my D diagnosis date)? Now dictionary.com did not exist back then, so I went back to the first year they were around and clicked on the word of the day for Friday, August 13th, 1999.
Triskaidekaphobia. Huh? This would be a word I didn’t know before. And what does it mean?
“Fear or a phobia concerning the number 13” (dictionary.com).
And now I am on the floor laughing so hard my stomach hurts! Why, you ask? Because this is PERFECT! It completely relates to my health condition.
I was diagnosed with Type 1 Diabetes on Friday, August 13th, 1993. So, while I do not suffer from triskaidekaphobia, I have mixed feelings whenever a Friday the 13th rolls around, in any month. I am not superstitious or anything, but that date did turn my world upside down. It changed the course of my life. For good and bad.
Triskaidekaphobia was the word of the day on dictionary.com on Friday, August 13th, 1999. This was my sixth diaversary. In 2010, my 17th diaversary was Friday, August 13th. This year, it’ll be on a Saturday.
I’ve never really celebrated my diaversary before. Since becoming part of the Diabetes Online Community, my perspective has changed some. Yes, the day is tinged with sadness. But there are also reasons to celebrate. I am still here, and am taking better care of myself now than I have in a long time.
For my 18th diaversary, I plan on celebrating in style, with cupcakes. And maybe even some unicorns and glitter…
Today’s Prompt: Your doctor wrote you a wacky prescription. What is it?
So I have mixed feelings leaving the endo’s office today. I look again at the piece of paper in my hand. It’s a prescription, written in my endo’s chicken scratch.
Evidently, there’s some new medication that is supposed to work wonders. It’s some kind of newfangled toothpaste.
Toothpaste doesn’t sound very exciting. And while it won’t eliminate the daily trips on the glucoaster, it claims to get rid of those pesky tooth sweaters! 😉
*ok, peeps, this is completely fictitious and entire made up by my exhausted brain. Just so we’re clear.
Today’s Prompt: Spirit Animal Day. A spirit animal (or power animal) is a figure used to represent one’s inner qualities embodied by an animal. Give your health or condition a spirit animal.
Ok, so I was having a lot of trouble getting inspired for this prompt. The obvious animal is a unicorn, but Ashley already took that one!
So I tweeted. Asked for help from my twitter friends. And my friend Briley said, “turtle. it lives forever.”
And I LOVE this.
The spirit animal for my diabetes is a turtle. It is rather innocuous looking at first glance. Moves very slowly. And as Briley said, it lives, maybe not forever, but for a really long time. And my D is with me for the long haul.
Though turtles may seem harmless, some are not. Remember snapping turtles, anyone? They can lash out and strike when you least expect it.
But turtles are slow. And no turtle’s gonna stop me! 🙂