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 don’t even know what to say here. I just know that I haven’t posted anything in three weeks and I feel like I need to write something here, even if I can’t write about the real reason I haven’t posted anything in 3 weeks.
I’m going to say that the sh*t hit the fan recently and we are all still trying to recover and mop up the insane mess that our life has become. Diabetes isn’t the biggest monster under the bed. And that’s all that I can really say.
I hope everyone is well and enjoying summer break (if it’s started yet).
In case you haven’t heard, Dexcom recently came out with the Dexcom Share System. The Dexcom Share system essentially allows a person using a Dexcom CGM to connect their receiver to their iPhone via bluetooth and a special Share app and send their Dexcom readings into the cloud, where they can be accessed by up to five “followers” the Dexcom user has invited to view their data, also via a special Follow app. It’s a pretty basic system compared to Nightscout, but it is also very easy and simple to set up and go. The downsides for many people at this point is that it requires at least 2 idevices – 1 for the sharer, and 1 for each follower (each follower would need their own idevice). There is not currently a supported watch that can display the numbers although it is rumored that the apple watch will have an app available when it is released in April. Assuming you want to or can afford to purchase an apple watch. At $350+ price tag this mom will not be getting an apple watch, and neither will her 11 yr old. The apps also are not currently Android compatible, and many people with Android phones are stuck waiting for this compatibility or trying to find other options (Some have started nightscout, while others decided to purchase idevices to use, others still have chosen to just wait for Dexcom to come out with android apps).
So, once again, the nightscout team has come to the rescue. Within a few hours of receiving their Dexcom with Share receiver fellow Nightscouters Scott Hanselman and Ben West were able to cobble together a system that allows current idevice users with Dexcom Share to upload their Share receiver data into their nightscout database and websites, which allows for continued use of the existing pebble smartwatches that many nightscouters have been using since early on in this project. This system is independent of the nightscout “rig” and for many people who simply want an inexpensive system (assuming they were already idevice users) with watch compatibility NOW, this is an awesome solution. It does have some quirks, but for what it is, it’s pretty amazing. I set our “bridge” up today and when Angelina goes back to school she will have to carry half the stuff that she’s been carrying since we started Nightscout last July. We have been an iphone family since 2010 so upgrade to the Dexcom Share was a no-brainer (especially considering we just got a ne receiver in February so we qualified for the upgrade free of charge) and added no additional cost to our management options. By using the new Share2nightscout bridge Angelina no longer has to carry around the nightscout rig. She can go back to snapping her Dexcom receiver onto her pump belt and having her iphone in her bag like she did before we started remote monitoring. This also means no more carrying the diabetes bag during PE, unless she chooses to, while still utilizing the Dexcom during that time, as well as the remote monitoring.
I posted on Instagram a few weeks ago a picture that told a pretty powerful story: the best system is all of the systems. They each have their benefits, but also their weaknesses. I have NEVER, not once, received any kind of audible alarm from Nightscout on my iphone. I’ve tried using several different browsers and I have even opened the most reliable browser, hit the alert sound test button to make sure it works then sat and watched the red box show up on the NIghtscout screen showing an alert state, but still NO audible alerts, even after 10-15 mins of the phone clearly showing an alert state. This has definitely been one of the downsides to Nightscout for me. Since getting my Pebble watch at Christmas I get vibration alerts on my wrist, which are VERY reliable. But, they are almost TOO reliable. Any time you switch to any of the other apps or watchfaces on the Pebble it resets the “snooze” feature, this seems to include clearing notifications, etc. so that means that my watch vibrates a LOT. Anyone who’s ever used a Dexcom and set their alert settings very tightly probably knows about alarm fatigue. Essentially, you become desensitized to the alarms because it seems like they are always alarming. So, you’re more likely to ignore them assuming that it’s the same thing it was 10 minutes ago. The bright side of this is it’s a watch, so it takes little to no effort to glance at it to see if it really is something I need to pay attention to, or if it’s simply vibrating because I just cleared the notification that someone liked my facebook status.
Dexcom Follow app clearly has the advantage here, at least in my experience and opinion. The alarms have fully customizable settings. You can choose settings like “Alert me to readings over 180 mg/dL after 60 minutes and snooze for 120 minutes” So, I’m not getting a high notification every time Angelina eats something, but I will get one if she went above her target range and stayed there more than an hour, meaning that it might be time to send a gentle reminder to check and do correction. Or at least a prompt for me to take a look at the graph (from home, or the grocery store- all while she’s at school) and see if I can figure out why things aren’t where they should be. The delayed alarms are pretty awesome in my eyes, especially since I am dealing with a tween who is slowly learning to take on more responsibility for her care. It allows me to still know when things are going on, but without the temptation to text or call as soon as something happens – often even before she gets a chance to think about doing something about it. It’s a safety net that allows her to take care of herself, but I’m there to catch her if she doesn’t. I’m not rushing to give instructions right away, but also not sitting back and letting things go totally off the rails, or at least not for very long.
With that said, down side to share2nightscout bridge is you lose some of the advanced features of nightscout. Raw data is a big thing that was recently added that I find incredibly helpful. Raw data is basically the data sent from the transmitter before the algorithm is applied in the receiver. The benefit of this is that when the receiver shows ???, hourglass, or is in the warm up period and not showing numbers you can still see the raw data and have a ballpark of idea of what glucose levels are. Rather than give this up completely, I opted to set up a separate azure site and Mongo database for the bridge data. This way other times I can still hook up the full nightscout system to still get readings, without ending up with duplicate data on our nightscout site, etc.
I also installed a new pebble watchface today that shows two receiver’s data on the same watchface. The watchface was created for those who are monitoring more than one person with diabetes, but I set it up to show me data from both the nightscout rig (when we use it) and the Share receiver through the bridge.
On to the Chicken Soup portion of my post. As I posted over the weekend, Angelina and I attended JDRF Type One Nation Summit event on Saturday. There were several hundred people at the event so it was inevitable that one of us would pick up some kind of bug and bring it home. Of course it had to be Angelina who got sick. She started complaining of a sore throat yesterday afternoon and by bedtime had a low grade fever. Overnight her blood sugar levels shot up pretty drastically and she got correction around 3am and again at 6am, along with an increased temp basal rate. She also stayed home from school today, which kind of stinks because she will also be missing tomorrow and tomorrow was supposed to be field trip day (and I was going as a chaperon as well). I emailed her teacher this morning to let her know we most likely would not make it tomorrow just in case she needed to make other arrangements for chaperons.
It was a pretty low key day. Angelina ended up sleeping in until almost noon and when she did get up she moved from the bed to the sofa and has sort of just moped on the sofa all day. She definitely has some kind of upper respiratory thing going on and was complaining of her ears feeling clogged and her hearing being impaired like her ears need to pop. She still had a little bit of a fever and just generally was feeling tired and weak. So I decided to make some homemade chicken noodle soup.
I don’t normally post recipes on my blog, but it’s my blog and I do what I want, so I’m going to tell you how to make some chicken noodle soup.
Ingredients: 3 ribs of celery, cut into 1/8 inch slices
About 12 baby carrots, cut into slices or quarters
3 packets Knorr Chicken Stock
10 1/2 cups water
3 boneless, skinless chicken breasts, cubed (About 1 to 1 1/2 lbs)
2 tsp Italian seasoning
1 tsp black pepper
1/2 tsp onion powder
1/4 tsp celery salt
12 oz package extra wide egg noodles
In a stock pot or dutch oven combine veggies, chicken, stock and water. Bring to a boil for about 10 minutes, or until chicken is cooked through and veggies are softened. Add Italian seasoning, black pepper, onion powder and celery salt – listed amounts are estimates, adjust to taste. Reduce heat to low and allow to simmer until vegetables are tender, about 20 minutes. Meanwhile, in a separate pot bring water for noodles to a boil and cook egg noodles according to package directions. When noodles have finished cooking rinse in hot water and add to soup. Allow to simmer for a few additional minutes for noodles to soak up broth. Serve! My pot of soup contained about 8 large-ish servings that were approximately 35-40g carbs per serving. If you eat soup in more normal sized bowls or portions this would easily make 12-16 servings which would be between 20-25g carbs per serving. You can further reduce the carbs per serving by using less than the entire 12 oz package of noodles. As you can see it was quite a lot of noodles, but that is how everyone in our house likes it.
Sometimes there’s a silver lining. Okay, enough cliches.
I posted a few weeks ago about Angelina’s depression. We’ll just say that things are status quo, but that’s to be expected. Anti-depressants (SSRIs) take about 4-6 weeks to become full effective so I am not expecting much at this point (2 1/2 weeks in). She has still been withdrawn and moody, still doesn’t want to talk about much of anything and especially not diabetes. We changed the schedule with her therapist from once a week, to every other week because it seemed for the past couple of months that every other week they would spend the entire session with Angelina curled up in a chair not speaking a word, and mostly not even acknowledging that her therapist was in the room, let alone trying to speak with her. There was speculation on my part that the timing of this may be hormonal, so we agreed to space out sessions a bit.
This week was her first session in two weeks and she seemed fine on the way to the office, but 10 minutes into the session her therapist came out to the waiting room looking for me because Angelina was not speaking to her. After a bit of probing on my part Angelina started engaging more and we discussed why she wasn’t participating. Her feelings were that therapy wasn’t helping her, so she chose not to participate. By the end of the session she had decided that she no longer wants to see her current therapist and would like to see someone else who might understand her interests better, so sometime in the next month (pending scheduling availability) we will be transitioning her to someone new. She expressed that she liked her current therapist, but there has been this underlying current in her statements about therapy that she feels like her therapist doesn’t understand her and she isn’t inclined to explain herself. Which I totally understand, as frustrating as it may be for all of us who aren’t mind readers. I think that rather than risk hurting the feelings of her therapist (which, awww) by telling her as much, she chose instead to just stop talking in therapy.
I am okay with this choice. First, because it’s Angelina’s choice. It’s her counseling, her mind, her emotions and feelings and I know it’s not going to be beneficial if she’s not willing to be counseled. Second, because I myself have struggled through the years truly opening up and being honest with therapists who I didn’t feel really understood me or my motivations, or who I just didn’t connect with. I also am a firm believer that some therapists are excellent at helping with certain aspects of a person’s journey, but just don’t connect with other issues. I recently just stopped seeing the therapist I had been with for the past three years (through mutual agreement) because while I am not completely “healed”, we both felt that she had helped me with all that she could help me with, or at least all that I would allow her to help me with. I learned a great many things from her and about myself in those three years and have walked away with an arsenal of coping skills and the most steady mental health of my adult life so far. But, it was time to move on. My biggest issues lately has been stress management and anxiety. My therapist’s approach to stress management involved a lot of new-agey methods that I do not enjoy and seemed to cause me more stress and anxiety, rather than less. What works for some does not work for all.
With all of that said, back to the point!
Diabetes has been absolutely crazy the past two weeks. We went from a week of stubborn highs, perforated with drastic lows that would shoot back up with a small amount of carbs. Then this past week she was experiencing stubborn nightly lows. On Tuesday her blood sugar did not go over 80 for nearly 6 hours. During that time she was sleeping and I carbed her up with over 100g of juice and honey. Fortunately the lows were not drastically low, but even a level of 60 for several hours can have a great impact on brain function and increase risk of seizures. She ping-ponged between 60-80 between 9p-3am and then finally, finally hit 120 and steadied there for the remainder of the night. The only night this entire week that she wasn’t low was because we went to an all-you-can-eat Mongolian BBQ restaurant and I purposely under-bolused her for noodles because I had a 504 meeting Friday morning and I needed to sleep. She woke up at 197 on Friday, which is not great, but not so terrible either and I just keep telling myself that both of us getting a solid 8 hours of uninterrupted sleep that night was an equal trade off, health-wise.
Friday night, however, we also needed to sleep because we were going to JDRF Type One Nation Summit Event an hour(ish) from home and were supposed to be up at 6am. We all went to bed around 10:30 pm on Friday and her levels were around 130. I crossed my fingers that she would hold steady there and things would be great. However, just before midnight I was awakened to the Dexcom alarming that she was 61 with a straight down arrow. Disoriented, I thought for a minute that maybe she was just laying on the sensor and it was a false low. But, knowing how every other night this week had gone, I dragged myself out of bed to go check on her anyway. (Please note the heavy martyr tone here.) Her blood sugar was actually 71, so… accurate for the Dexcom. Of course, the trend arrow was of greater importance because 72 alone isn’t that alarming, but a fast drop along with a 71 means “Get some sugar in this kid STAT!” So out came the Elmo juice, which is the only juice that she will drink. And is also the only juice that I have never had spit on me while she is sleeping. I also punched in a 50% reduced basal for two hours as that seemed to be what worked earlier in the week to keep her from going too low, but also not going super high during the rest of the night.
She dropped down a little further before the Dexcom showed her coming back up so I thought maybe I could get back to sleep in a record 30 minutes. But diabetes had other ideas. She hit 81. And then 76. 73. 70. Dammit! It was now 1am. I’d gotten about 45 minutes of sleep so far that night because even though I went to bed at 10:30 I have trouble falling asleep and that was the earliest I had been to bed all week. And it wasn’t looking like I was getting back to sleep anytime soon. 1:30am. 2:00am. Tick tock. Tick tock. I posted some incredibly rambling, slightly incoherent status updates and comments on Facebook. I put it out into the universe that being a d-parent up at all hours of the night waiting for lows to come up or highs to come down and posting on facebook in the meantime was a bit like drunk texting.
Finally around 2:30am she finally hit 100 and steadied out. I headed back to bed with the thought that we were not making it to the JDRF event because there was no way I was driving anywhere on roughly 3 hours of sleep. And then I forgot to turn off the 6am alarm I had set. So I got woken up at 6am anyway and couldn’t fall back asleep. This was in part due to the fact that my husband was also getting up at 6am to go to work and had also set an alarm. Except he doesn’t politely turn the alarm off when he decides he’s not getting up for another hour, he just hits the snooze every 9 minutes like a jerk. Even when his bedmate (that would be me) not so politely says “If you’re not going to get up now, please shut off the F#$%ing alarm instead of just snoozing it” He finally got up around 6:45 and got ready and left for work. At 7am I gave up and decided I was not going back to sleep and made the decision to get Angelina up and head to our event.
You can imagine that neither Angelina or I were particularly cheerful or bright-eyed and bushy tailed on the way there, but I managed to get us there in one piece- and in record time, no less. And to top it off we actually got there before the first keynote speaker took the stage. We attended last year’s Hope & Health Symposium (as it was called in previous years) and the event went about as I expected. The big difference this year was Angelina.
Last year she went into the kid’s room and did crafts and played with some of the other kids, even though she was one of the oldest kids in there. She checked out all the vendor exhibits and regalled everyone with her knowledge and was just generally engaged in everything and not afraid to speak up and speak out and share her limited experience and stories. To the point that one of the speakers, Joe Solowiejczyk, sought me out in the ballroom and said something to the effect of “I just had a great talk with Angelina. I was very impressed with her.” and had me going “Who the heck is this guy and why was he talking to my 10 yr old?” LOL. Of course, I found out quickly who he was and left the event that day a huge fan of him and his work with teens/youth/families with teens with diabetes.
This year, however, beyond just the expected sleepiness was a total lack of interest. She had recently expressed to me that she did not want to go and if she had to go that her plan was to find a quiet corner and play on her phone the whole time because she wanted nothing to do with diabetes, or other kids with diabetes. (This lack of willingness to engage or co-mingle simply because it has to do with diabetes has also been her biggest reason that she had refused to go to diabetes camp this summer, much to my disappointment. She’s still taking care of diabetes tasks, but she doesn’t want diabetes to ever be the focus of conversations with others.) This year’s event added in a Tween/Teen room in addition to the kid’s room, but she said she would not go in there. Until she wasn’t given a choice because they wouldn’t allow her into the kid’s room. So instead she found a corner in the tween room. I checked on her a few times during the day in between what I was doing and she held true to her word to not engage.
Until her phone died. Constant use of an iPhone for a few hours, listening to streaming music and interacting on an internet forum will kill the battery in roughly 4 hours, just in case you were wondering. When I got her for lunch she said to me “I’ve only got 19% battery left. Can we go soon?” To which I responded, “The event is over at 3. I told you to conserve your battery or this would happen.” I know, I’m a mean mom, right?
We recently started using the Dexcom share, so when I got a “no data” notification on my phone from the Follow app I knew the inevitable had happened – her phone died. And with 2 hours to go until the end of the conference. I expected her to come find me and beg to leave. So I was pleasantly surprised when that didn’t happen. Around 1:45pm I decided to go peek my head into the tween room to see what was going on. All the kids were gathered in a circle and sharing stories and experiences. I didn’t want to interrupt so I politely went back out even though I didn’t see Angelina anywhere. I was a little concerned, but figured she was fine. About 15 minutes later though I needed to use the restroom during the session I was in so sneaked out and decided to poke my head into the tween room just to check again. I still couldn’t see her anywhere but I heard her speaking, and even better she sounded happy and engaged to I left as quickly as I could so hopefully she wouldn’t see me and think I was spying.
After my session was over I decided that we would leave a bit early because I wanted to beat the traffic and the last presentation was not something I was interested in. But, the tweens/teens were still having their discussion and one of the group facilitators was standing outside guarding the door. We talked for quite a few minutes and she told me that Angelina was very actively participating in their sharing session and had given some really insightful and meaningful responses and seemed to finally find her spot in the group. Of course, story of her life that she finally finds her place just as things are breaking down and everyone’s going home. But she walked out of that room with a smile on her face and happy and one of the first things she said was “I think I do want to go to diabetes camp this summer after all.” Oh, happy day!
Moments like that are so precious to me these days because they seem to happen less and less often. I know some of that is just this age and stage of development, but it’s other things too with her. And I cling to these conversations like rays of sunshine on cloudy days. And then I cry while I blog about them because I realize that I miss my daughter. I miss the bright, happy, enthusiastic little girl that she used to be. And I know things have not been good for her for a while, but when I see these bright spots it makes me realize how very dark the clouds have gotten over her life (and by extension, our life). And I know that I can try to help her, but until she makes up her mind to help herself that things will not get better. I hope that she learns this lesson sooner in life than I did.
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!
Back in December one of my favorite D-moms posted an article about diabetes and depression in children. It is an anonymous D-mom’s story about her 11-year-old son suffering from depression and ultimately ending up in a psychiatric hospital for stabilization. The story touched me in many ways, at first because I have a child who is 11. Second, because I’ve personally had the experience of spending some time in a psychiatric hospital for severe depression. The story made me feel very deeply for this family because it was hard to imagine watching my own child go through this same sort of downward spiral and not fully realizing exactly how deep that spiral had gone. And then having the added fear of not only hearing your child say they want to end their own life, but then also trying to make arrangements for them to be safe, when everyone you talk to at the facility they are going to doesn’t understand or know how to manage their diabetes. And because your child is depressed and suicidal they can’t manage their own care because, in case you didn’t realize it, too much insulin can be a deadly. Lack of insulin can be deadly. Having suicidal thoughts and not getting proper treatment can be deadly. I don’t want to even think about how helpless that mom must have felt having to make those arrangements.
A few weeks before this article I had been growing increasingly concerned about Angelina’s mental health. Her therapist had also expressed some concern about her moods and was concerned about depression. She had become more withdrawn in her therapy sessions and about every third session she wouldn’t speak at all, but sit and sulk. At the beginning of January we met with her psychiatrist (who prescribed medications for her ADHD) and I had briefly mentioned we were concerned about depression and requested that she reach out to the therapist. I signed a release form and hoped that the therapist would be able to explain better than I was what was going on. The psychiatrist seemed unaffected and said that mood swings were common at this stage. We discussed how her current ADHD medication didn’t seem to be working well for her anymore and she prescribed a new one to try. She suggested that we keep an eye on things and follow-up next month.
Things continued this way at therapy for the month of January. The first week of February we met with the psychiatrist again and again I expressed concern about depression, as well as the therapist’s concern about depression. She seemed to take things a little more seriously this time, but we still mainly focused on how things were going with the new ADHD medication and general talking points “How’s school?” Fine. “How are your grades?” I don’t know. “Are you hanging out with any friends?” No, I don’t really have any friends. Those were about the only words muttered by Angelina in our 25 minute visit before she sort of curled up on the end of the sofa and started at the floor. Any further attempts to engage her were met with stony silence. At 20 minutes into the appointment, after nearly 3 minutes of no one saying anything the therapist says “We’ll follow-up in a month. If she’s having more bad days than good we can possibly discuss medication.” and we scheduled our next appointment and left.
That brings us to the past month. There are still more good days than bad, but there are more of those days where one minute things are fine and the next minute her entire attitude, mood and disposition change and she is sullen and completely withdrawn and refuses to speak or interact. About 3 weeks ago Angelina’s therapist asked me back to talk alone for a few minutes, and I ended up talking to her the entire session time while Angelina sat in the waiting room. We discussed the possibility of antidepressants and her response was “I’m a therapist. I don’t automatically jump to medication to try to help people. But I’ve been seeing Angelina for a year and a half and in the past few months she talks to me less and less and I’m at the point that I don’t know what to do or how to reach her. I can’t help her if she doesn’t talk to me. It’s obviously your decision, but at this point I think medication might be a good idea.” About a week after our last visit with the psychiatrist I mentioned to my husband that we had discussed medication for depression. I was a bit surprised when his response was “No. She’s already on enough medications. I don’t think that’s necessary. A lot of kids this age deal with depression. She doesn’t need to be medicated.” And for the past few weeks we’ve dug up this discussion a few times, always meeting at a stalemate. We were finally able to reach an agreement yesterday.
Today Angelina saw her psychiatrist and tomorrow she sees her therapist and will start taking an antidepressant.