Did you just laugh? Because God did. Or I like to think He did.
I know God is there. I know people from the diabetic online community are there, partly because I tweeted that it was 3:00 am and I was awake and frustrated with diabetes and I knew that people from the #doc were up, too, and it got a few favorites rather quickly. It’s funny how those simple gestures can make one feel less alone. Excuse my rapid-fire Twitter vent session following that tweet, but I’m tired and I’m aggravated and maybe this blog post should be called “My Stream of Consciousness Regarding Diabetes at 3:48 am is actually ‘Very Dark, Corny Humor'”?
Well, this is real. This is what those #FreeDiabetics pictures portray without sugarcoating it. We all want to be free and we deserve to be free. This is the side of diabetes that society doesn’t often see; this is the suffering that I wish none of us ever had to endure.
I’ve been on the phone with diabetes companies all week trying to sort out insulin pump problems that I am having. I owe ya’ll a blog post about that, I know. Consider this the precursor post. We are troubleshooting every element to see where the problem arises. Is it the infusion sets? Is there a product defect? Is the pump functioning properly? Is the reservoir releasing insulin correctly? Am I inserting into scar tissue? Muscle? Am I sick? Am I stressed? These are the constant questions when something goes awry with diabetes; rarely is the culprit caught red-handed.
Ketones are my nemesis. They make me buckle at the knees and revert to being a whiny, miserable child. Even small amounts of ketones send me straight to bed. Unfortunately, with all of these issues going on in the background, ketones rear their ugly, ketonic heads quite often nowadays. It is a testament to how great my nurse is that she is one of the only people who I can definitively tolerate in these moments of weakness. Well-intentioned friends and family members are unjustly used as scapegoats for my anger when ketones appear. It is easier to allow a nurse or a doctor to tend to the invisible wounds. Alas, they are in Boston and I am in the Providence area, so it’s Ally versus the Ketone Crusader at what is now 4:00 am.
I struggle with taking in a lot of carbohydrates during the day. Years and years of traumatic experiences- from inadvertently taking too much insulin to having a bent pump cannula while eating pizza which led to a blood sugar above 500 on my birthday, etc.- have led to a “fear of extremes,” as my doctor put it. We’ve all been there to some degree. But I am being honest with you all in that I am somewhat stuck there right now. I go to the doctor all the time to work on this. Part of the process comes with trusting my insulin delivery mechanism. Let’s narrow down the potential problems list until we find something that works in terms of insulin pumping, and then we have to work on ingesting more carbs and properly dosing insulin once we can be confident that insulin is delivered. Back to the basics.
I do not want to go to bed with my stomach growling anymore because I am afraid of eating a big dinner on top of a potentially-faulty pump site. I promised my doctor last week that I was going to try, that I wanted to do this. “I do not want to go to bed hungry at twenty-six years old, and that’s one thing I can commit to changing,” I said as she smiled and nodded, proud of our progress. But tonight I did go to bed hungry. I had eaten a larger than usual dinner (but still not large enough) and changed my pump site afterwards, while then babysitting my blood sugar as it slowly but surely went up and up. My stomach churned as ketones formed, but I convinced myself that they were not there and went to bed, ignoring the persistent emptiness in my gut by sleeping it off. Later I woke up with a ketones level of 1.2, probably a combination of my body burning fat for fuel in its hungry state as well as a bad pump site… again. This happens on a weekly basis, hence the ever-growing bags under my eyes.
Back to the drawing board. My goal tomorrow (well, later today at a normal hour) is to eat more carbs and take a “perceived risk” by dosing more insulin with my spiffy new pump site once I wake up in a good range and know that the site is doing its job well (fingers crossed). I would greatly appreciate it if anyone who has gone through similar trials with insulin pumping and low carb intake would offer advice, whether in comments here or in private messages. (See Contact page on the blog). I know that I’m not crazy, that there truly is a problem going on even though I feel like a broken record talking about pump site issues, that someone out there has to relate to this somehow. Please, help a diabetic Sista out. If I can pay it forward in any way at a later time, or even if this post resonates with you in some manner, my work here is done for 4:30 am.
Time to go count diabetic sheep. Goodnight, #doc. And thank you for listening.
5 thoughts on “Are you there, God? It’s me, Very Light, No Sugar.”
After wearing a pump for 16 years I gave it up and went back to injections. Why? Read this blog! With only short or rapid insulin in a pump, problems with tech or sites can quickly lead to ketones. For 15 years I had few problems. Then I started getting inflammation at the infusion site within hours of insertion no matter where I put it. It was not the insulin, so figured the plastic cannula was causing this. Never did try the metal needle, might have worked. At the time (2007) my pump was old (Medtronic 507C) and due for replacement. Medicare would only pay for a refurbished older version of the Paradigm, so I went back to MDI. This way I have long insulin in my body at all times, which provides that basal dose to keep me covered and out of ketone hell. I really like that. For the last 9 months I’ve been eating low carb, which is working out great. The less insulin I take the better I feel. I’m off the carb roller coaster! Only need two shots a day, both at breakfast, one Levemir and one Novolog. That’s it! BGs are more stable, good A1C (6.1), and feel better, too. Plus I don’t need to check my sugars that often! 🙂
I know we spoke on Twitter earlier, but thanks again for your input. It is truly helpful in these moments to hear from other diabetics who have experienced these frustrations firsthand. Congrats to you on a wonderful A1C and for figuring out the complicated pump/injection struggles to best suit your needs. Here’s to continued success! Thanks again!
Hi sweetie, I just wanted to say that i’ve struggled with the carb fears to quite an extreme (currently in recovery from anorexia, which was largely catalysed by my diabetes). So if you ever want to talk, please do message me!
I’m working hard to try and reevaluate my relationship with foods/carbs completely, but recognise that the control will inevitably always be there. You can find a balance 🙂 Just don’t let carbs become the enemy – they are needed for fuel! xx
Thanks so much, Sophie. I just discovered your blog via Twitter. I can definitely relate to so much of what you are saying, especially the pump site issues. I have made the same desperate phone calls to my parents and flung the same diabetes technological devices across the room in recent years! 🙂 I am slowly but surely working with a good doctor in Boston to get back on the carb wagon and to make sure we find an insulin delivery method that actually works so that carbs don’t have to be the bad guys anymore. I appreciate your advice and understanding so much and will definitely be in touch! Thanks for reaching out!
Also, Sophie, good luck to you as you work towards your own diabetes/health goals. You seem to have a very good head on your shoulders, and your openness and honesty about your situations will take you far in terms of getting the right treatment, as well as in connecting with others who can relate along the way.