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).
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.
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.
Today was Angelina’s quarterly endo appointment. I don’t know why but I always feel over-prepared for her visits. It’s almost as if I’m expecting her endo to suddenly tell us we’re doing everything wrong and change everything. However, every visit I am reminded why we love her. Because she doesn’t.
We were at the office for about an hour. In that time the nurse checked Ang’s blood sugar (238 -high from waffles), her a1c (6.7!!!) and took her pump and meter to download. We did wait a little while for the endo to come in, but she always gives us her full attention and never makes us feel rushed. She always has complimentary things to say and this is the second visit in a row where she pretty much said that we’re doing great and things look great and she doesn’t change a thing. We discussed morning breakfast spike and how I feel that is probably why Angelina’s a1c went up slightly from her last visit in August when it was a 6.5 (lowest ever!).
Because now that she’s back in school and morning’s can be hectic we don’t always get the chance to pre-bolus. And breakfast is pretty much convenience foods that are quick and she can eat on her walk to school, which coincidentally are some of the foods that seem to cause the biggest spikes. Her endo asked if I thought we should look at her breakfast ratio and I said that I had played with it a bit, but then we dealt with lows instead and that it was usually high on mornings when I know we didn’t do all we could to prevent that spike. She turned to me and said “You’re the expert.”
Maybe I’m being narcissistic, but I always love it when the endo tells me I’m the expert. Because, well, I am. I’m not a diabetes expert. I don’t have a medical degree and I probably can’t do or know even half of the endocrinology related things that her endo does, but I am an expert in MY kid and MY kid’s diabetes. The fact that her endo not only recognizes, but also verbalizes that, makes me feel awesome. And because she trusts my judgment, it makes me trust my judgment, and that means that I am more proactive in caring for Angelina’s diabetes and making changes when needed, instead of sitting around wringing my hands wondering what I should do. Or worse- waiting by the phone for the doctor to call to tell me what to do. Don’t get me wrong – there’s nothing wrong with either of those options and if your dr hasn’t given you the instruction or guidance needed to make those types of decisions on your own or you don’t feel comfortable making them, then it’s better and safer not to. There is no right or wrong way. But I have never been one to sit around and wait for someone else to tell me how to handle things that I am capable and willing to handle on my own with occasional guidance.
These appointments provide me with that guidance. They provide me with that feedback that it’s okay to do things my way, and the way I am doing things is having a positive outcome. And knowing that if I don’t know or I’m not comfortable that the endo is there to help, but ultimately this is Angelina’s disease (and mine since I’m handling daily management) and not the doctor’s.
Afterwards Angelina wanted Taco Bell and consumed 146 carbs at 3:45 in the afternoon for a “snack”.
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