So I know the holidays are all over and done, but there’s something I need to get off my chest. And yes, I realize I sound like the Grinch, so bear with me.
As a person with diabetes and emotional eating issues, part of me absolutely HATES the holidays!
Whew! I feel better now.
Don’t get me wrong. As I warned you before, I LOVE Christmas! I really, really do! It’s the food that comes with it that I don’t.
The holidays and their food come around, and I feel like acting like a two year old. Laying on the ground and having a full-blown kicking, screaming “IT’S NOT FAIR!!!!!!!” fit. Diabetes is extra hard around the holidays.
Yes, I know I can eat that. And I do. Along with doing my effing best to bolus for it. But no where is safe. Cookies, cake, pie, candy, cupcakes–everywhere you go has something. And if you have the willpower to say no to all of it, I applaud you. I wish I did. But I don’t.
Even when I don’t overdo it and just have one piece or one cookie, that doesn’t mean my bgs won’t shoot the moon. It’s frustrating.
As much as I wanted to have that meltdown, I refuse to give diabetes that victory. Overall, I’m please with how I handled the holidays. Yes, the emotional eating reared its ugly head. But not as bad as it could have been. As much as I wanted to rip my CGM out for all the beeping, it helped me keep tabs on things, and do a better job of handling the consequences of said emotional eating. And the lovely weather helped too. My therapist suggested going for a walk when I get stressed and/or emotional. It really did help.
I also got to see so many friends and loved ones this holiday season. This I treasure and am so thankful for. Especially my 90 year old grandma and 93 year old grandpa, whom we honestly didn’t think would make it to another Christmas. They are still here. And I wouldn’t trade my time with them for anything.
But I’m also a firm believer in acknowledging the difficult things. Acknowledge them, face them, and move on from there. And when I tweeted something Christmas Eve stating my feelings about the holidays at that moment, I got a lot of love and support. The #DOC never fails. And those responses, reminding me that I wasn’t the only one, helped me face the rest of that weekend and focus on the joy and the things to be thankful for.
So thanks for putting up with my Grinchiness, even if it is a little late.
Thank you all for sharing in my joy earlier this week. I am still so thrilled!
But this post from Kerri yesterday stopped me in my tracks. If you haven’t read it yet, please stop and do so. The rest of my post will make a lot more sense if you do.
Here I sit, having just gotten my lowest A1c in years. And reading Kerri’s powerful post brought tears to my eyes. It’s not effing fair. The same blood test. While I am celebrating, my friend is crying. Not fair. Makes me want to punch something.
Because I’ve been there too. We all have. Those A1c results that leave us in tears, stomp all over our self-esteem, and make us question everything we’ve been doing. They leave us feeling defeated, wondering, “Why the hell do I even bother?”
And the guilt. Oh the guilt. Hello there, old friend who I wish would leave me the eff alone. What is wrong with me? Why can’t I get my act together. Other PWDs have amazing A1cs. If they can do it, why can’t I?
How can a number make me feel this way?
I have felt that way. And if you are a person with diabetes, or the parent of a child with diabetes, you have too. I’m happy with my A1c right now, but I know that at some point in the future, it will rise again, and those feelings will be back.
But can I tell you something? Something that some fantastic friends have told me?
IT’S JUST A NUMBER.
The head knows it, but the heart is harder to convince.
My A1c is just a number. Yes, it is an important number. Important because it relates to my health. I need to take care of myself. And I want all my friends in the DOC to take care of themselves. But we ALL go through patches where we don’t. Living with diabetes is hard. Like Cherise was talking about on DSMA Live last night, diabetes can’t have all your attention all the time.
But those feelings? The shame, the guilt–THEY ARE LIES. Can we do better? Yes. But beating ourselves up about the number is not going to aid that endeavor. An A1c is a number. It is data to be used to say, “What now?” Big thanks to Bennet for reminding me about that.
Also, my better is not the same as your better. I’m thrilled for Brian and his A1c, but I don’t think I’ll ever see mine there. I don’t want it there. My diabetes is different than Brian’s. Our A1c goals are not going to be the same. Your diabetes may vary.
Celebrate if your A1c is where you want it to be. If it isn’t, call out guilt and shame for the liars that they are. And read this post from Melissa.
You can do this. One day at a time.
Every few days. Like clockwork. I go through the motions, but don’t really think about what I’m doing.
I don’t think of myself as a sick person. As a person with a disease. But as I stood there, drawing the insulin from the glass bottle down into my pump reservior, I was reminded that I am.
As much as I don’t like to think about it, Type 1 Diabetes is a disease. And prior to 1922, it was a death sentence. The work of Banting, Best, and the other men involved have saved so many lives. They saved my life. The lives of so many of my friends.
A bottle of insulin is such a tiny little thing. Not much fanfare, not much glory. But when you think about it, it’s kind of miraculous to stand there and hold a bottle of the substance that keeps you alive in your hands. And to think about all the people who died before insulin was discovered. And the people still dying today for lack of access.
Without this tiny bottle of insulin, I would have died at age 10. The last 20 years of my life–poof!–gone. I am so thankful and grateful for everyone involved in the discovery of insulin. I quite like being alive.
If you’ve not read the book Breakthrough, I highly recommend it. It changed the way I look at insulin. It’s a lengthy and emotionally intense read, but completely worth it. Dr. Banting and Elizabeth Hughes are forever etched in my memory.
So Happy (Belated) Birthday, Dr. Banting. Thank you for being so doggedly determined, and refusing to give up despite the odds. What you discovered keeps me alive each and every day.
I still can’t believe it.
Yesterday, I had my quarterly endo appointment. For the first time in a long, long time, I was actually looking forward to my appointment.
Yes, you read that correctly. I was excited to go see my endo. Crazy, right?
The last month has been going so well. Not that all my bgs have been amazing. Far from it (i.e. the week before my period. Holy high blood sugars, batman!).
But it’s been about a month since I started seeing my therapist. It’s quite freeing to talk about my life and the things I’ve been through to a mental health professional. More than I thought it would be. I didn’t expect to see results in regards to my eating immediately. But I have!
Not that my emotional eating is gone. It isn’t. It’s still there, lurking, every time I get upset or stressed out. And I have slipped multiple times. I’m far from perfect. I know I have a long way to go, but I feel like I’ve made progress. I still have high bgs, but when I’m not binge eating, I’m not running high ALL THE TIME. It feels nice.
So I went into the appointment feeling hopeful. Hopeful that my A1c would reflect how much better I was doing and feeling. But I tried not to get too excited. To remind myself that the A1c is just a number, and may not reflect my progress in such a short amount of time.
Walk in, sit down, nurse pricks finger, checks bg and gets sample for A1c. The endo comes in and we chat as he looks at my CGM reports. He seems pleased by the average line on the graphs.
The suspense is KILLING me! At this office, they slide a card with the A1c under the door when the results come in. As I talk to the endo, I keep looking at the door. Come on, already!
My endo says, “So I hear you’re seeing Dr. X. How is that going?” And I’m in the middle of telling him when the card slides under the door.
Say WHAT? My A1c was 7.5 last time. It’s down to 7.1! SEVEN POINT ONE, PEOPLE! I can’t even tell you the last time it was that low. Seriously, I can’t. Again, I know that an A1c is only a number. It does not reflect my worth. It does not define me. But to have tangible evidence of progress is incredible.
My endo was, of course, thrilled. At the end of my appointment, I snuck down the hall to my CDE’s office and peek in. She’s there. I tell her my A1c. And give her that hug. And she is almost as excited as I am. I feel so blessed to have such a supportive team in my endo, CDE, and therapist. I wouldn’t have reached this point without them.
Upon leaving, walking teary-eyed back to my car, I text my mom and call my husband, who share in my joy. They have supported me always, through thick and thin. I owe them so much.
I sat there in the car all teary-eyed because I could hardly believe it. One year ago, I saw my endo in November, and my A1c was 8.0. For me, that was the highest I’d been in a long time. For me, that was rock bottom. And then I found the DOC. You all have inspired me to take care of myself. You have taught me that I can do this. Without you, I wouldn’t have had the courage to ask for help. And I wouldn’t be sitting here with quite possibly the best A1c of my adult life. Thank you.
So there was too much going on in my brain to write another post about Simonpalooza, so I decided to vlog it. And I talk a lot. I’m sorry.
I quoted this song in the vlog. It’s one of my favorites. Every time I hear it, I cry and think of the DOC. I love you all! We are ALL with the band!
There’s one more video you HAVE to watch. But go get some tissue first.
I’m serious. I’ll wait.
Don’t say I didn’t warn you. You WILL cry!
If you’re short on time, skip my vlog and watch this video that Sara put together. Simon took some time to thank Cherise for all she’s done. What he had to say had us all crying. A lot. Watching the video had me balling again!
So get your tissues, and go watch the video! Thank you Simon, for having the courage to share so openly and honestly with everyone. I really admire you for that. Thank you.
So, I’ve been blogging since January. And I love it.
I do realize that people read my blog, mostly from the Diabetes Online Community. Some of you, I have never met. Some of you I have.
But sometimes I forget that people I know in my everyday life read my blog. My mom. People at my church. My college friends. Until they say something, and then I’m all like, “Oh yeah…”
Sometimes I don’t know what to say when someone outside the diabetes bubble says something about my blog. “Um, thanks,” is about all I can usually muster.
But sometimes it means a lot. Especially when it comes from people I really care about. Like my college roommates. Those three girls are some of my closest friends. They knew about my diabetes, but I didn’t like to talk about it, so we didn’t. I was more into the “pretend it doesn’t exist” crap back then.
Now, I’m more open about it. And those three girls read my blog. They listen to me talk about the DOC. They can tell how much you all have helped me, and that makes them happy.
I am so blessed to have such wonderful friends! One of them did a guest post for me. Another one was present for this incident. And another encouraged me to tell her more about the DOC when I was still wary of talking about it. (Oh, come on, you know how some people think you’re crazy when you try to explain the DOC). We sat on her couch, and she and her husband listened to me try to explain it. And they all have been so totally and completely supportive.
I’ve talked to two of them on the phone this week. And they asked all about Simonpalooza. And listened to me go on and on about it. Because they are happy for me and they really do care!
We have been friends for nearly ten years. Which is crazy, and makes me feel old, but that’s another story for another time. We have been through a lot together, good and bad. It makes me so very happy that they have embraced this new direction my life has taken.
The DOC has changed my life. No doubt about it. But so have these girls. And I need to remember that, to not get so wrapped up with my DOC friends that I ignore my other friends.
If any of you three girls feel ignored, I am so sorry. And I am so, so excited that I get to see ALL THREE OF YOU very soon.
And to all my “real life” friends. Those who have been there for the long haul. You have made a difference in my life. I am so blessed.
So thank you, my friends. You know who you are. I love you.
I dedicate this post to my friend George.
Last week, George tweeted this.
I LOVED this! And so I responded.
And some other Twitter friends had great ideas too!
And this one had me rolling on the floor!
And this one had me rolling on the floor!
I love this hashtag. A lot. Diabetes is hard work. A little personalization goes a long way, as does a sense of humor.
The #5words game inspired me.
I decided I was done looking at my boring meter. So I decorated it. With Duct Tape.
Purple tape to match my purple pump!
The light’s kinda funny, so in case you can’t read it, on the top it says, “It’s just a number!” And on the bottom, “Does not reflect my worth.”
So now, I see both of those lines every time I check my blood sugar. And you know what? I think it’s helping a little.
What are your five words?
*Ok kids, when I covered the meter, I made sure to work around the opening where the strip goes in and the battery case. If you choose to cover your meter in Duct Tape, or anything else, please use common sense.*
So I’m kinda of a messy person.
Ok, so I’m actually quite a messy person, as anyone who has lived with me can attest to. I mean, I clean the bathroom and dust, not that kind of messy. I just tend to pile up things and kind of…just…leave them.
I’m working on it, ok?
In my great attempt to get more organized, yesterday I decided to do something about the state of my diabetes supplies. Shockingly enough, they were mostly in the sameish place.
|yeah, yeah, I know…|
|at least I brought them inside…?|
Suffice it to say that my supplies are a little disorganized. So yesterday, I went to Target, and after going low (of course), bought this:
And I attacked that hot mess of a shelf!
And now my diabetes supplies are all neatly put away in the corner of my bedroom.
Or so I thought. And then I saw it. ANOTHER Medtronic box on top of the hot mess shelf! NOOOOO! My pretty new white drawers are full! Oh well…
It’ll have to do. And today, I’m calling Medtronic and taking myself off of automatic shipment. This is ridiculous people. I think I could outlast another ice age with this stuff.
Not really. And I’m grateful to have the supplies, and insurance to help pay for it. I am extremely blessed.
And that shelf is no longer a hot mess. Woot! Even if it still does have a couple D related items on it…
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.
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!