Boogey Man

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

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School Issues and 504 Plans

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 Can’t Even…

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).

Take A Deep Breath and Count to 10

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.

Endo Day

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”.

Type 1 Diabetes (faux) for a day(s)

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

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