I have lots to write about today. I can start with my dexcom change that created a pretty awkward protrusion on my thigh after being in the same location for 20 days. Or maybe speak about my afternoon nap, amid which I woke up to my dexcom beeping. 44. With some insulin still on board. I ate a massive chocolate bar, and called my dorm counselor to bring me some ices. Or juice. Or anything…FAST. I was literally soaked through my shirt, and dreaming about eating candy in my sleep. After 2 ices, that chocolate bar, and a full cup of juice, I was at 80 with a slight up arrow, and went back to sleep. (Obviously that was followed by a wake up of 198 and an up arrow.) I can speak about some other things, such as the fact that I’ve spent the past while (maybe 2 weeks?) looking at a screen of red hills and blue valleys and not that much green in between. However, I’ll leave that for another time. Right now I’m just thankful that this is my lot. Thank Gd my parents, siblings, and friends are healthy. No one is going through chemo or counting their days. No one is complaining of starvation or crying of poverty. Each day is made up if millions of moments that we didn’t plan. Yes, endless highs can be frustrating, but it’s manageable. Thank Gd I live with people who appreciate me and care about me. Thank Gd school is not a struggle for me as it is for some others. Gd gives each person what they can handle. On the days diabetes is difficult, thank You for teaching me patience and appreciation for the days that are better. Thank You for the good times and the better times. I could not ask for a different life.
There are plenty of bottles and cartons and vials of medication on the shelves and in the fridge of my local Rite Aid pharmacy. All I need (at least at the moment) is one little vial of insulin. A vial that’s smaller than my pinky and looks like it’s full of clear, clean water.
A vial that needs replacement each month.
A vial filled with the substance that keeps me alive.
A vial so simple, yet so full of angst.
I’m blessed to be able to have health insurance.
I’m blessed to have a pharmacy nearby.
I’m blessed to have ample technology to set my blood sugar straight.
I’m blessed to live in a country where medicine is available.
And yet despite, or maybe because of, all these blessings, today this little vial caused my grief.
I’m low on insulin. (No, not like hypo low, low as in I have about 80 units left and I’m about to go on a trip for two days.) I refilled my prescription over the phone, and went in today to pick it up. When the cashier rang up the print out, the total stared at me in shock. Or actually, I stared at the total in shock. Or in total shock. Anyway, not the point.
$448. Should I repeat that? $448. I called up my insurance and they said the problem should be fixed within 24-48 hours. However, as I said before, I’m leaving at 6:00am and won’t be back till Friday, at which point I doubt I’ll have much insulin left. The nice woman on the phone told me to pay out of pocket, and I could be reimbursed within 7 days by just giving the cashier my paperwork. Thank Gd was able to put those funds on to my card, and pick up my Novolog. On one hand, there’s nothing note valuable than life itself, so I guess I shouldn’t get so upset, but on the other hand, those dollars can be stretched very, very far.
It’s always exciting to start a new, clean, fresh, vial; I just wish it didn’t come along with such baggage.
This is part of Diabetes Blog Week, where blog prompts help generate a series of posts by folks in the Diabetes Online Community. Here’s today’s prompt: “In the UK, there was a diabetes blog theme of “I can…” that participants found wonderfully empowering. So lets kick things off this year by looking at the positive side of our lives with diabetes. What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could? Or what have you done that you’ve been particularly proud of? Or what good thing has diabetes brought into your life? (Thank you to the anonymous person who submitted this topic suggestion.)”
(I will preface by saying that it’s been a while. Although there have been many thoughts that were post-worthy, or days that I just felt like venting, I never got around to it. A little while back I actually did write up a whole post, but it got deleted. It was that time of night that I just had no more energy to rewrite. And it’s taken this long to get back to it. So thanks for creating dblog week :))
I can. I can do a lot of things, almost anything. But obviously, there are those things that are blockages, obstacles, discouragements, and setbacks. I can have a CGM graph that looks like this:
And that can be discouraging. That looks like a day spent with zero self control. As a diabetic, self control is really important. When you’re playing with something that thrives off surprises, you want to have as much power as possible. So yeh, that chart had me feeling upset for a little. Until I realized I can.
I can take a trip to Trader Joes and buy healthy replacements. I can keep a strict watch on my insulin dosage. I can decide what I ingest, and I can decide to tweak my basal to avoid lows that lead to highs. I can create another competition to keep things in check.
I can have a graph of this type of day:
It’s important to encourage yourself and realize that inspiration can come from within. The satisfaction that this picture brought was incredible. And with only 3.05 units of novolog to make it happens, it urges me on to have another day like this tomorrow. I know it’s only numbers, but when you live with this disease every day, you realize that a day full of numbers adds up. And you realize how important it is to get back on track.
And you know what? I can.
Its been a busy week. I wish I can say a perfect week, but there are rarely perfect weeks. Actually, I’d say almost never perfect weeks. There are just better days and worse days. My week has been speckled with just a few lows, and has been pounded with highs. I think my bg average the past few days has been higher than any other time in the past year. Yom Kippur went pretty well, and all I ingested was one little candy. However, as can be expected after a 25 hour fast, the glucose and insulin in my body sort of forgot how to get along. I think I’ve gotten over the eating on yom Kippur/using my pump on shabbos/doing things that don’t fit what is seemingly the right thing to do. So that part of yom Kippur wasn’t too emotional. But what has been playing with my mind a lot since then is the fact that my cousin is staying over. He is on a mission while at my house: to be as diabetic as possible. To wear his pump out AT ALL TIMES, to test in public, to speak about diabetes, and to show me that its natural. That I should copy his way of doing things.
So I did. For the first time ever, I wore my pump out for an entire day. In and out of the house, around family and total strangers. It felt cool. I was walking down the street hoping someone would see me and say “Hey look! She’s diabetic too!”
I’ve been openly using my pump around my family, which is something I’ve never done before. They’re asking questions and I’m answering, because I’m tired of pretending to everyone around me that this doesn’t exist. I still dont know what will happen when I get back to New York, but at home, I’m going to be comfortable and happy. I think his little game is reaping success, and I’m thankful.
It’s freeing and entertaining, and while my actual numbers have been high and making me super frustrated, my family is able to be more supportive. Because they’re starting to know.
And you know what, pumps make you look cool 😉
I hold my diabetes in my hands like a secret. Only a select few can open my closed palm and see what’s inside. Only those who I trust to be gentle and caring. I’ve carefully wrapped up my secret with ribbons and bows, put it into a parcel and into my pocket. It’s a privilege to be privy to such information; to such a personal part of my life. I expect all who see it to leave it alone, yet I would love if they inquired; would love if they wondered how well my secret was doing.
I feel that just as I wouldn’t own a a rare object and walk around with it easily accessible, to be treated harshly and freely, I dont walk around with my diabetes open to the public.
I know that its different. Logically I shouldn’t be hiding my diabetes. It doesn’t define me, and by knowing that I’m diabetic doesn’t make someone know the whole me. I know.
But what I know and what I feel don’t always match up. I recently read a quote that now goes through my mind pretty often, “In a year from now you’ll have wish you started today.” I look back at a year ago, two years ago, and wish I had started then. But I didn’t. Why look back in a year from now and say the same thing? It’s a new year and a new chance. I will take steps to make the disconnect click. What I say and what I think will slowly become more in sync. If I act less and less like I’m holding something precious, and act more and more like I’m stating a fact that many Americans share, then it won’t be a rare object. It’ll be a part of me that those who want to care about will, and those who don’t, won’t.
Let’s see how it goes…:)
(Dont get too excited…he came back. )
Life was going at its usual quickened pace when all of a sudden my Diabetes disappeared. I had no idea where he went. I checked highs and lows, but there was not a trace of him anywhere. I ate at 100 and was 103 an hour later. I was popping pomegranate candies like nobody’s business, and then ultimately covering for fear of a major hypo. My numbers were spanking perfect. When Diabetes is around, things usually get pretty twisted and shaken and broken, but with Diabetes away this past Tuesday, life was a breeze. I was eating cheesecake and chocolate and staying around 105. I was bolusing a bit, but even after 20 minutes, BG reading was incredible.
I took off the pump that is a constant reminder of his presence in my life, and sat down at the dinner table to enjoy the holiday. I started to reminisce about the days before Diabetes had charged uninvited through the front door of my house and moved right in. I was enjoying the reprieve, but I knew it was only temporary. Diabetes was out of the picture, but I was waiting cautiously for his return. I know his personality by now-always hitting you when you least expect it. I was eating my salads and proteins and constantly checking for signs of my missing tenant. However, I wasn’t going to lose sleep over him. I went to bed at a comfortable 150 and waited to see what would happen.
In the morning I was 160- not too bad for being detached. Although I wasn’t mad, I knew that Diabetes had returned. Like an old friend, I welcomed him back with a worn but knowing face. As far as I know, he’s back to stay.
* I had a hypo (70) Monday night before bed, then corrected it (113.) I had detached my pump and fell asleep before reattaching. I woke up at 120 (and that’s after eating more than I should have to correct). I reattached my pump and lowered my basal, but was eating and correcting and correcting all day. By Wednesday things were pretty much back to normal..
Today I decided to pick a wildcard topic for #DBlogWeek. The topic is: Tell a story of a diabetic equipment or accessory, from it’s point of view. (Yeh, that wasn’t worded so well. But its late and my phone can’t copy the prompt from the source…)
I’ve never met so many people in one day. I usually stay hidden and quiet, tucked away in a pocket or band or dress. It’s not that I’m shy; I just don’t really know how to interact with people. Will they accept me? Question me? Play with me? Intead of wondering, I usually just pretend to be invisable. Its much easier that way.
But today was different. Today I met 2 medtronics. They have their own dialect and were beeping nonstop, but we chatted. We spoke about meters and hypos and cheesecake. We spoke for about an hour, and then I had to leave and carry on with my day. Not that I have much of a day anyway… I stay inside for the most part, and get pressed through layers of clothing. My buttons have indentations from finger nails being forced too strongly into the rubber.
I’m not sure why my Person doesn’t do it the easy way; it would make much more sense to just use me in public. But I sort of just let her do her thing. She has these theories in her head that I don’t agree with. I think that she’s worried about her friends seeing me; she thinks that they will see her differently. I’ve heard her say otherwise, but I don’t fully believe her. After all, we’ve been together for about a year and a half now. Her friends can all see that she’s the same girl as before we met. She thinks they might look differently; she doesn’t realize they don’t become as emotional and disturbed as she thinks they do. They’ll most likely not ever bring me up in converstaion. I think she sometimes over analyzes things too much…
I also think she doesn’t want the empathetic faces People put on when they see me. She feels that they will never understand, and by looking at me all they can do is feel bad. She never liked people feeling bad for her, after all, she never likes when people do anything for her. She likes being independant. But in my opinion, she’s totally missing the point.
Her friends and family love her, and want to care.
I hear them talking sometimes, long after my Person is asleep. They discuss how closed and mysterious she is, and they wish they knew her better. She doesn’t realize that they want to know. They want to hear about they hypos and the stress and the difficulties, just as she wants to hear about theirs.
But I guess that’s her weakness. It takes courage to ask for help. It takes courage to admit that sometimes the world doesn’t fit on your shoulders alone and that there are times when it’s ok to share the burden.
The other night she was filling my cartridge. My Person is very emotional by nature, yet she doesn’t cry about diabetes. She accepts this as some blessing from Gd, and doesn’t imagine a different life. But as the drops of insulin sprayed across my screen, I felt a deep, heavy breath fall onto my battery cap. She was overwhelmed. She had just finished a conversation with her cousin that left her thinking. It was time to reach out to others. Time to make that group that they’ve been talking about, and time to inform a wider circle of friends and family about the situation, because holding it all in isn’t strength.
Me and my Person are very close. I hear her every conversation, (although sometimes they are muffled by the thick cotton sweater pockets,) feel her every pulse, and experience her every move. She’s much older than I am, but I wish I could tell her a thing or two. I wish I could tell her how good it felt today to speak to a peer. To be spoken about in public. And when she introduced me to her friend yesterday, I wanted to sing. Her friend was just as excited to see me as I was to see her. Her friend doesn’t look at her any differently; her friend just realizes that there’s an added dimension to my Person’s life, called diabetes. And even though her friend doesn’t understand a single D-term, she’ll try, because diabetes isn’t her fault. Its not a choice she made or an object she bought. Its a blessing that was given to her as a birthday present from Heaven.
I work every day to keep my Person healthy. She works every day together with me. But I think its time to recruit some coworkers, because sometimes the world doesn’t fit on your shoulders alone.
And that’s completely fine.