This post is only slightly about diabetes and a lot about mental health and struggle. I will probably take this down later because this is so incredibly personal and I’m probably doing everything wrong posting it at all, but I just need to put it out there in the universe, even if for just a day or two. If you’re reading this (I did not share on any social media to promote this) please, please… just hug your kids a little extra today. I’m so grateful for so many things in my life as despite all of the struggle we’re going through we’re still incredibly fortunate in so many other ways. Continue reading
This morning I spent an hour and a half talking to Scott for the Juicebox Podcast which is featured on his blog, Arden’s Day. Scott and I talked about issues with diabetes accommodations at school, and how to negotiate for some of the things that may seem like common sense to D-parents, but that schools aren’t always so quick to embrace. I had specific questions about how he managed to convince his daughter’s school to allow him to manage her diabetes from afar via text while she is at school. Many schools have strict “no cell phone” policies, and our school in particular has been prickly about allowing cell phone use, even for medical care, unless Angelina is in the office being directly supervised by the nurse or health tech. Of course, my feelings (and I’m sure the feelings of many others) is that this requirement seems to defeat the potential benefit of texting. My desire to be able to communicate with Angelina through text is to help avoid some of the extremes that would require an adult’s help, such as very high or low blood sugar, and also allow her to remain in the classroom so she is not missing important instruction or classwork because of her diabetes care. From my perspective, she and I being able to text during the day about her diabetes care is a win-win situation. She gets more butt-in-seat time in class AND I am able to help her address issues with blood sugar levels as they happen, instead of waiting until the next office check-in time – at which point it could be anywhere from 1 to 3 hours that a rogue blood sugar goes unchecked.
The podcast will be shared in the next couple of weeks on Arden’s Day and I will be sharing a link to it if any of my readers are interested in hearing it at that time. I also will likely be writing a bit more about school preparations and 504 Plans in the next few weeks as we inch closer to back to school time. Be sure to check out the “504 Plan” and “Education” tags in the upper left sidebar to see my previous posts on these subjects and the evolution of our relationship with Angelina’s school regarding her diabetes.
I’m going to rant for a moment because what the ever loving heck is going on here?!?!? I went to bed at 11pm and gave correction for a 170bg. I got woken up at 3:30am by this lovely new share contraption to a 254 bg. Corrected, started a 150% temp basal (that’s +50% for you non-medtronic people) and figured she’d be good by morning.
Apparently during this middle of the night shuffle I managed to flip the switch in my phone to vibrate. Share does NOT give audible alerts when the phone is on vibrate, just FYI. So imagine my surprise when my alarm went off at 7:15am and Dexcom says she’s 297. Fingerstick says she’s actually 321. Correct. Extra correct. Check ketones- negative. 200% temp basal for the morning. Go back to bed.
Wake up at 10:30am bg is 135. Hooray!
Did I mention we did something not dissimilar the night/day before? I want to blame the time change, but I’m pretty sure time change doesn’t make a person’s body totally laugh at two different correction doses, double their basal insulin dose and keep on rising. Oh yeah, and it’s a sure-t set that was new on Sunday afternoon so not a cannula issue.
This post is courtesy of #dblogcheck. If you’re not sure what that is then click the hashtag!
Ugh. It’s me again. Venting. Again. I’m so tired (literally and figuratively) of crazy blood sugars! Last week Angelina started experiencing incredibly stubborn blood sugars between 11p-3a ish. I thought I knew the culprit so I just treated the lows and tried reduced temp basal rates. Then Monday she got sick and was running higher levels all day long. The outside culprit that I had blamed for the nighttime lows was no longer present so I was confused after a day spent battling numbers in the 300’s, that at night she was still dipping down drastically between 11p-3a and needing low treatment and reduced temp basals. But, come 3a the illness/stress hormones seemed to kick back in and if I didn’t start her back on increased temp basal for that she would wake up very high in the morning. So, needless to say I haven’t been sleeping very well lately. We did have 1 night where I didn’t have to reduce her basal and she ended up perfectly in range and I thought “Yay! The lows are over!” Then last night it happened again and BAD. Reduced basal drastically, especially considering how much extra basal she’s still getting during the day, plus gave multiple low treatments which seemed to move her barely at all.
So, tonight when she was low at bedtime (earlier than usual) I went ahead and reduced her basal rates for a few hours hoping that it would prevent those lows we’ve been seeing a little later on. She also had a single juice box at 10pm for a 63 bg. The juice only brought her up about 25 pts after 30 minutes, which is not as much as I’d like, but I figured I would wait and see what reduced basal would do. Well… here I am, 1:40am and her BG is 218!!! I stopped reduced temp basal around midnight when she hit 165 thinking that the “normal” downward spiral we see about that time would level her off or possible drop her slightly. Nope. Still going up. I have no idea what is happening. I am tired of this. I HATE DIABETES RIGHT NOW!
And saying that, if it’s not clear, you can envision the scene in the Jim Carrey version of The Grinch where he is going through the phone book saying “Hate, hate, hate, LOATHEEE ENTIRELY…” that is me right now, and diabetes is every entry in the phone book! I am normally a pretty positive person when it comes to diabetes care and a wise D-Mom told me early on “Correct and move on” and I try to live by that as much as I can. Because if you don’t just correct what’s happening right then, and move on, diabetes will take over your life in a bad way. But maybe it’s because it’s late and I’m tired, but know that I still have work to do before I can rest, and even then I will still probably be up in 2 hours doing more diabetes work. Maybe I am just feeling sorry for myself right now. Whatever the reason, I know these feelings will pass. I know that soon, maybe not tomorrow, or the next day, but soon, things will go back to “normal” and diabetes will return to being the passenger in the back seat, rather than the driver of our lives, but tonight is not that night. And tonight I am angry and sad and feeling burnt out. For myself and for Angelina. I’m angry for the times like this past week, where diabetes has seemingly taken over everything. I’m beyond tired. I’m exhausted, mentally and physically. I didn’t really realize it until just now.
I just wish, more than anything, that this monster would leave my child’s body and we could be free of it, even for a day. Even an hour. Because even on her best days, it’s still there, lurking in the shadows, waiting for one small misstep. An incorrectly counted meal or snack. An incorrectly calculated dose of insulin. A spontaneous stop at the park for half an hour. All of it, any of it, can cause our carefully balanced house of cards to come tumbling down. We must always plan for the unplanned. Expect the unexpected. Constantly be on our toes and monitoring blood sugar levels. Making sure that I’m never without a quick source of glucose at any given time, for any given activity, even a quick trip to the grocery store. Especially for a quick trip to the grocery store.
Constantly trying to remember what day it is today and what day it was when we last changed her infusion set or her sensor. Or at least trying to remember to set the reminder that will remind me when it’s time to change these things. This afternoon she asked for a glass of milk. As she was bolusing she said “Oh, I have a low reservoir”. There were 0.75 units of insulin left in her pump. And I sat there thinking hard, trying to remember what day it was and when we last changed her site. Fortunately it was Monday, she just went through her insulin faster than usual because of being sick and needing extra insulin all around.
Two hours now since I increased her basal insulin. Blood sugar has not gone down, but continues to steadily climb upward. 235 currently. I guess that means that the lows aren’t coming tonight. Time to correct and move on. To sleep.
We were recently fortunate to get a replacement transmitter for Angelina’s Dexcom system. The warranty period on the transmitters is six months and we had her first once for just over 8 months (since January) when we decided to swap it out for the new, slimmer version. The old transmitter had been acting a little weird, but was generally still okay, but since the clock was ticking on the new warranty we decided it was time to swap them out anyway. That left us with an operable transmitter that’s clock was winding down in the diabetes supply cabinet. We also recently had a small part of plastic break off of her receiver and lost the usb port cover, which is something that is covered under warranty and scored us a nice new receiver yesterday. I sent her off to school with the new receiver today and an idea came to me… I’m going to wear her spare devices for the next few days.
So, this morning after she left for school I shot myself with a Dexcom sensor. I’ve worn a sensor before, shortly after we first got her Dexcom, but it was only for about 36 hours and then she decided that she wanted it back. Since we temporarily have a full extra system I will be able to wear the Dexcom for at least a full week (I could likely wear it longer, but I do have to send the receiver back to Dexcom since it was a warranty swap to avoid being charged $199). Since I was hooking up the Dexcom anyway, I decided to also put in a pump site – skin tac, tegaderm and all. And since we don’t have a spare pump lying around I just taped the tubing to the Dexcom receiver since I have to carry it anyway. This may seem like still not comparable to what Angelina has to carry with her, but when we are together I generally carry her Dexcom receiver anyway so now I will carry two receivers part of the time, while she carries 1 receiver and a pump part time, and then just the pump while I carry 2 receivers.
It’s not really the same as having Type 1. Because, yes, I’m attached to bionic parts with tubes and tape, but I don’t have to deal with the ups and downs of blood sugar. I will still be carb counting, because I do that already for Angelina, but I won’t have to actually bolus myself with insulin since my pancreas still kicks it out pretty well on it’s own. I will, however, be checking my blood sugar a few times a day since the Dexcom requires at least 1 calibration every 12 hours, but I won’t have to check before every meal or if I wake up in the middle of the night.
Wearing these devices will hopefully give ME a sense of awareness though. That sense of having things attached to me 24/7 like Angelina does and having to be mindful of that when I change clothes, take a shower, or walk past door knobs to make sure tubing doesn’t get caught and sites yanked out. I’ve placed both sites on my abdomen because I’m home alone and those were the only places I could reach easily on my own. I considered wearing the Dexcom on my arm like Angelina does, because it makes it visible. It makes diabetes visible and it causes her to get a lot of stares and people asking questions – sometimes it’s annoying, but it also starts a conversation about diabetes and every conversation about diabetes raises awareness. But, alas, I cannot reach the back of my arm on my own to place a sensor. So, my awareness will have to be here. In pictures
If you’ve read my previous posts, you know that Angelina started middle school this year. Middle school has brought with it changes in how her diabetes is treated at school, and how much she is able to do independently. We struggled last year to fight for her right for independence and honestly, we failed. As we moved into this school year I resolved to be a better advocate for her at school and to insist on more independence, regardless of what happened last year or what the school nurse’s opinion was. I also brought David along with me on the first meeting this year, as support, but also to show that we are united in this and even though he was the only man in the room, there’s something about a dad attending this type of meeting that seems to communicate “We mean business”. (More on the injustices of a patriarchal society later.)
I went into today’s meeting prepared to battle and was pleasantly surprised to find that it wasn’t totally necessary. Last year we had problems, not so much with the school administrators, but with the district nursing staff who seemed to think they understood our daughter’s needs better than we or her physician do. Who seemed to think that their interpretation of the doctor’s orders were the only correct ones, despite the fact that the doctor and I discussed the orders and *I* pretty much wrote them (read: told her what I would like them to say) and she added her signature for weight and authenticity. Yet, I was told that I did not know what the doctor meant, only the nurses did, since they are nurses. You can understand why I would be apprehensive going into this year’s meeting.
However, the district nurse supervisor has changed. And not only that, but the district nurse supervisor is also the overseeing nurse for Angelina’s school, which means we have only one district nurse who we have to deal with, instead of two. And she was AWESOME. I was nervous, certainly, going into the meeting. The nurse out both David and I right at ease and shared how she has twin 10 year old sons at home and she understands, from a parental perspective, how difficult kids this age can be. And then the meeting started.
First off, the assistant principal had another meeting to attend one hour after our meeting began so she was very concerned about time. Of course, she then proceeded to read last year’s 504 plan line by line rather than just diving into the changes that I had made to this year’s 504 plan and go over the things that were remaining the same. I will never understand when people say they are short on time and then choose the option of doing things in a way that takes the longest amount of time. We finally got around to the revised plan and discussed changes.
Something that became immediately apparent is that the current district nurse supervisor was not consulted before the AP made changes. Instead, she had consulted the nurse we had last year. And the changes they made were terrible. The first section essentially said Angelina couldn’t do anything on her own, which is not at all what the doctor’s orders said. The look on the AP’s face when I said “No. She will test her blood sugar independently. She doesn’t need to go to the nurse or to have the nurse come to her for that.” was priceless. She sputtered and then went to get Angelina’s diabetes care book from the school nurse (who was not in the meeting) that contained her doctor’s orders. Clear as day the doctor’s orders say “She is able to be independent with blood glucose testing, CGM trends and alarms.” Verbatim from the doctor’s orders. How anyone can get “needs to be supervised” out of that statement, especially after having this argument ad nauseam last year, is beyond me. And if there was a question, this line from the doctor’s orders should serve as further proof “Check blood glucose with meter brought from home or additional meter left at school. this meter should be allowed to be carried by Angelina.” It was even more humorous when the AP turned to the DNS and asked her to which the nurse replied “She shouldn’t need supervision for that. It clearly states in the orders that she may be independent. I have elementary kids who do this independently, it’s not hard.” Oh my goodness… where was this nurse last year? I sorely needed her. And that was that.
The rest of the meeting went rather smoothly. There were a few tweaks that the AP had made on top of changes that I had made. Some of them were changed back to my original revisions, others additions were kept. All in all, the meeting only ran twenty minutes late. We didn’t sign anything today because of the changes that need to be typed in, and then we will reconvene to sign everything. I just have to make sure to go over it all with a fine tooth comb because I noticed that some of the sections looked mostly the same but a few words were changed that totally changed the meaning.
If you read my blog because we belong to some of the same T1 groups then you have probably seen me posting about flying for the first time since Ang’s T1 diagnosis last year. Or, my paranoia about being strip searched by the TSA for putting juice boxes in our carry on bags. I am here to tell you that it was all for naught!
I have been so stressed out about what to pack for our trip as far as diabetes supplies and worried about “Is this going to get us in trouble?” “Is this going to have to be thrown away at the security checkpoint?” I now have the answers to those questions! NO! Just no!
We left Los Angeles Monday evening after a quick curbside good-bye as my husband dropped Angelina and I off at the airport. I was a little disappointed because apparently the terminal we were dropped at didn’t have a skycap so I had to attempt to maneuver our giant suitcase (which I miraculously managed to get to weigh just under the 50 lb limit. It weighed in at 48.6) while also carrying a giant purse, a giant backpack full of electronics, a carry on suitcase full of medical supplies, and corral Angelina! We waited in line at the airline desk for what seemed like forever, but finally we were on our way to security.
I made a point to tell every TSA worker that we came in contact with that my daughter had T1D and that I was carrying medical supplies. Of course, I didn’t need to and I kept being told “Tell them at the front”. We finally made it through the (very narrow and anxiety inducing) line up to the conveyor belt. Fortunately we got cleared into the TSA pre-check line which means I didn’t need to take anything out of any of our bags and we both got to keep our shoes on! I told the gentleman that my daughter was T1 and that this suitcase was filled with medical supplies, including liquids. He talked to the person running the scanner and let him know then directed us to the line for the metal detector. I will stop here for a minute.
This was a big source of my anxiety. We fly out of LAX and I sort of figured that if any airport had the AIT (imaging) machines, that it would be there. TSA rules say that if you refuse the AIT you have to get a patdown. You can’t choose the metal detector if you are supposed to go through the AIT unless you are physically incapable of standing with your arms above your head for the 7 seconds it takes them to scan you. So, I had given Angelina an early heads up that she might have to get a pat down. LAX does have the AIT machines, but apparently they only do them for some people and most people still just go through the metal detectors. Woo! Was I happy to see that we didn’t have to go through the AIT. However, when we got up to the metal detector Angelina was in front of me and the guy stops her and says “What’s that under your shirt?” So she lifts up her shirt and starts explaining about how she has diabetes and it’s a machine for her insulin, yada yada yada. Angelina tends to be long-winded (wonder where she gets it from? *wink*) so I was just like, it’s an insulin pump and braced myself. The guy says, okay, go on through and then stand right here and points to a spot to the side after the metal detector.
She walks through, no beeps. I walk through, no beeps. We stand to the side for a minute and a lady comes with a little piece of padded cloth, swipes it over Ang’s hand and sticks it in the machine then says we can go. We walk over to the conveyor belt, grab our stuff and we are on our way. No questions, no bag inspection, nothing. All of my worrying was for nothing. The whole experience was actually LESS stressful and intrusive than the last 3 or 4 times that we have flown since I didn’t have to separate out my bag of liquids and take off my shoes, etc.
The hardest part of the whole experience for me was waiting in the chute. I am a big girl, and I am also prone to claustrophobia, so to be stuck in a partitioned line that is just wide enough to accommodate our rolling carryon suitcase, while wearing a big backpack, a big purse and said suitcase and trying to keep Angelina from knocking into things/people with her backpack was very uncomfortable. But, we made it!
The flight is a different story. Overnight flight with a very excited 10 y/o makes for a very exhausted mom who got zero sleep in over 24 hours. Add in a 3 hour time loss and I am just very glad that I know what to expect for our return flight. It should be easier. David will be with us to help and it’s a daytime flight where we gain time instead of lose it.