CGM in the cloud is up and running.
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.
As you can see from this (rather large) photo… blood sugar levels were floating along nicely at a pretty steady 115ish for a few hours after her very low carb dinner because she decided she only wanted chicken and sauce and not the side of rice. Okay, fine, whatever, no big deal. Dinner was a little later than usual this evening because I didn’t got the slow cooker started until later than I should have and so what, it happens.
We were watching the 3rd episode of Sherlock season 3 on Netflix and OMG it’s 8:45pm and you didn’t do your homework yet and you still need to take a shower before bed. Of course, like every time I tell her she needs to do homework or shower (or both) there’s lots of whining and complaining and “I’ll do it super quick 5 minutes before I’m supposed to be asleep. Please let me play on the computer for the next 40 minutes until then.” To which the answer was a very firm “Not on your life. If you can really do all that in 5 minutes then do it now and then you can have until bedtime to play.” Makes sense, right?
Well, she did do her homework and it really did take her about 5 minutes. But then it was time for the shower and instead she’s picking at scabs on the back of her heels. I may not have mentioned this before but she has pretty bad eczema and one of her “quirks” is that she scratches herself bloody on a fairly regular basis despite our best efforts to keep things under wraps. Well, she had some scratches already and she apparently decided that picking at scabs and scratching was a better use of her time than, oh, getting in the shower so she could actually do what she really wanted to do (computer time) before bed. Around 9:10 I finally coerced her to stop picking and get in the bathroom for her shower. Five minutes pass, no sound of the shower. Ten minutes pass, still no sound of the shower. At this point I announce that it’s 9:20 and she better be getting in the shower because it’s 10 minutes until bedtime. At which point she promptly starts crying and sniffling in the bathroom. She doesn’t want to get in of course, because all that freshly raw skin is going to burn under the water stream.
We’ve recently started recording her various “meltdowns” at the direction of her behavioral therapist so when the crying hadn’t subsided in 10 minutes I decided to start recording and go in to see what could possibly be the matter. Of course she won’t talk to me, won’t get in the shower, won’t look at me, etc. Just crocodile tears and lots of sniffles. Any suggestion on my part that she now, finally, get in the shower is met with a sound that is similar to a cat that’s been backed into a corner and isn’t quite hissing, but has that deep rumbling sound they make that says “I WILL scratch you!”
After about 10 minutes I manage to get her into the shower and get her hair washed, her crying and being generally uncooperative the whole time. I finally leave the bathroom with 21 minutes of this weird crying, sniffling, growling audio recording. At this point her pump has also been off for almost an hour. I think maybe her blood sugar is going to be heading upwards since no basal insulin and am shocked to see that instead she is 72 with a sideways down arrow. I manage to check her with the meter (she, at this point, is laying in the bathtub with the water off but not getting out) and it also says 72.
And then I realize… She started dropping at 9:15. The same time that she finally headed into the bathroom to start this entire process.
So… which came first? The chicken or the egg? Was this drawn out emotional meltdown the result of a blood sugar drop? Or was she really that distraught over the prospect of showering that her blood sugar ended up dropping low?
Just one of those stupid, stupid things that we deal with living with a child with Type 1 and other emotional/behavioral issues. It’s often hard to tell what caused what…
Click for the What Brings Me Down – Wednesday 5/14 Link List.
May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)
from bittersweet diabetes
Well, I just have to say that May being mental health month was something I was aware of long before diabetes entered our lives. I try to stay away from talking about my bipolar on this blog, because, well, this blog is supposed to be about diabetes. And plus, I have a whole other blog dedicated to my journey with bipolar (Which has been sadly neglected the last year or so).
But, I feel like today would be an okay day to blog about my bipolar and our family’s overall mental status in regards to T1D. It’s been over a year now since Angelina’s diagnosis and I feel like we are in a good place. I’ve made being a diabetes expert my life’s goal (joking, sort of.) and even being relatively newly diagnosed, I am quickly reaching expert status. Angelina’s endo actually called me an expert at her check up two weeks ago, that was weird, but made me feel all warm and fuzzy inside. Part of my mental issues are that my version of reality is something grossly WRONG compared to other people’s. I tend to question and second guess myself often because of this and then swing wildly the other way and believe that I know better than almost anyone else. It just reminds me of the totally cheesy 90’s commercial for Sure Deodorant. Anyone remember those? That is me on a daily basis, except I’m not worried about damp armpits.
So, I come off being either totally arrogant, or neurotic and wishy-washy.
On another note, bipolar and diabetes have a lot in common. When you’re out of your “normal range” you may act oddly and have little control over it, you may be cranky and irritable, you may want to just lie down and sleep all day, you may want to eat everything in sight, or maybe not ever eat anything ever again. You may realize that you are high or low and try to do something about it, only to find yourself plummeting dangerously in the opposite direction, seemingly spinning out of control. Or, you may not recognize when you are high or low until someone else points out that you are acting strangely. Sometimes highs or lows (blood sugar or moods) happen for no apparent reason and may stick around stubbornly despite your best efforts to try to control them. Sometimes you get stuck in a rut and just give up on trying to control it, despite the consequences. Sometimes you put in no extra effort and things are wonderful.
Moods and blood sugars can both be affected by: food, hormones, stress, exercise/activity, weather, medications, illness, other medical conditions, changes in routine or sleep, your support system (or lack of), proper professional support (dr, therapist, etc) and education.
Both conditions are subject to being misunderstood and stigmatized by the general population. Both conditions are often the brunt of jokes or flippant statements that are only loosely based in fact, if at all. Neither condition has a cure. Both conditions are very serious and require intensive management and treatment to avoid immediate and future complications. Both conditions are prone to not be taken seriously unless you have them or are very close to or a caregiver for someone who has either of them.
On the other side of that coin, they are different. T1 has a very medically measurable physical cause, bipolar doesn’t usually. T1 is more physically painful with all the pricks and pokes and is often more publicly visible. Bipolar is more mentally and emotionally painful and often is “invisible”. While T1 is a physical disorder and bipolar a mental disorder, they both effect the mental and physical side of a person. Neither are easy.
I was thinking of writing my poem in iambic pentameter a la “10 Things I Hate About You” but I haven’t written in iambic pentameter since high school and we’ll just say it’s been more than a decade, so bear with me.
I hate the way you make her high,
and the way you make her low.
I hate the way you take our sleep,
I hate it when she knows.
I hate your stupid needle pricks
and the way you make her bleed.
I hate that sugar is n0t a want,
but since you, it’s a need.
I hate the way you’re always here,
I hate that you won’t leave.
I hate it when you make her cry,
even more when you make me grieve.
I hate that we may never know,
how to get you out of our life.
But mostly I hate
the way you have changed us,
for the better,
despite all of the bad times,
and the sleepless nights.
Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.) From: http://www.bittersweetdiabetes.com/p/2014-diabetes-blog-week-topics-posts.html
While I’m not out to change the entire world, I do try to change at least our small part of it. So, what am I passionate about when it comes to diabetes? Can you guess? I can’t pick just one topic. Support. Education. School issues. Those are probably the ones that I participate or talk about the most. The ones I am most passionate about.
I don’t see “support” and automatically think about it being advocacy though. I think of it as a lifeline for anyone who is dealing with diabetes in any way – whether it is a person with diabetes, parent of someone with diabetes, friends, family, co-workers. There is no limit to who can benefit from support when it comes to having diabetes touch your life. I honestly wouldn’t be where I am right now in Angelina’s journey if it weren’t for the DOC and the 24/7 support and connection with so many other people who are walking a parallel road. Which brings me to the next cause:
EDUCATION. Diabetes education is probably the thing I am most vocal about, simply because I feel like there’s not enough awareness out there about Type 1. And it seems that even the people who try to raise awareness for Type 1 do it at the expense of Type 2. By saying “well, that statement that you made about food doesn’t apply to T1. My T1 child didn’t do this to themselves.” While the statement is true, it implies that people with T2 “did it to themselves”, which is not always the case. I don’t agree with raising awareness and education for one condition while making ignorant statements or putting down people with another, similar condition. Yes, Type 1 and Type 2 are different. Yes, Type 2 does have risk factors that include lifestyle choices… but, it also has a strongly genetic component. And regardless of any of that, diabetes, in any form, SUCKS! No one asks to have diabetes. So placing blame doesn’t benefit either cause. If I am going to teach someone about something and part of that education is differentiation from a misconception they have based on something else then I am also going to educate myself on the other topic (in this case, Type 2) so that I don’t come up looking like the ignorant and mistaken one.
Lastly, school issues. This is a tough one for me. I have a loud mouth, and a blog that I can share a lot of information on. Feelings, frustrations, triumphs, thoughts, information… But when it comes down to it, advocating for your child at their school is HARD. Because it’s not about just shooting your mouth off. If you want things done your way at your child’s school then you have to find a balance between being pushy, and being a push-over. If you go in guns blazing, chances are the school personnel are going to push back against everything you demand. But sometimes, if you go in nice and easy they just steam roll right over you and you leave feeling like you weren’t heard and didn’t get the things that you want and need for your child’s safety and well-being at school. Finding the balance is difficult. Forget difficult, it’s damn near impossible. Sometimes you can’t do it on your own. Both the American Diabetes Association and JDRF will provide information for working with the school on your own to come to an agreement about how your child’s diabetes will be managed at school. Sometimes, doing it alone isn’t enough. Both the ADA and JDRF have legal advocates that can help guide you and will also attend meetings with you to make sure that the laws and regulations regarding students with diabetes are being followed. And sometimes, the school seems to go along with all your requests during 504 meetings and then doesn’t follow the accommodations that were agreed to. Taking the steps to make sure that not only are the accommodations being agreed to, but also followed, can be a tenuous process. But, in the end, our children are the priority and as a parent we must do whatever it takes to ensure that they are having their needs met.
This post has very little to do with blood sugar readings or diabetes. If you’ve read the two posts prior to this then you know the past few days have been fraught with issues with blood sugar. If you haven’t, read here and here. I also have been stressed communicating with Angelina’s teacher, school nurse, and administrators. I’ve spent a good couple of hours in the past two days reading and writing and exchanging emails to make sure that her diabetes 504 plan is being followed for state testing.
Well, Angelina leaves for the bus around 8am every morning. As she was walking out the door to go to school I get a text from my husband, “They are laying off about 1/3 of the employees today.” Now, everyone is afraid of being laid off or losing their job. For us, this would be absolutely catastrophic. I am on social security disability and not able to hold a job. I have not had a job for over 5 years. On top of that David JUST bought a new car three weeks ago after driving the same car for 9 years. So, for the first time in about 5 years we just took on a monster of a car payment. He needed a new car and March marked a record end-of-quarter for his employer. There were talks of raises this year and congratulations all around. And, of course, aside from my disability we have a child with a chronic medical condition that even the most basic treatment for is very expensive.
Our health insurance is through my husband’s job. If he lost his job we would not only lose about 80% of our household income, we would also lose our health insurance, which means we would actually lose about 160% of our “income”. (You can do the math there) I posted about how much diabetes has cost (before insurance) in the past year since Angelina’s diagnosis (you can find that here). Simply put, we wouldn’t be able to afford her diabetes without insurance. Or we would have to default on the auto loan we just took out, which would be the more likely scenario. Even then, I’m not sure how we would do it. Fortunately, like many people with D that are fortunate to have good insurance, we have a stockpile of diabetes supplies. But even that would probably only last us a month to 6 weeks past the expected refill time. And that’s only because I just picked up her insulin from the pharmacy yesterday (All $880 of it, before insurance).
Four of my husband’s friends from work were let go. A lot more people than that were let go, but these 4 are people that we associate with socially and who have been to our home and/or we have been to theirs. It wasn’t until 9:30am that I finally got the text that said his job was safe. I am incredibly relieved for us, because job loss means so much more than just a loss of income. In very real terms, job loss for him could very quickly mean having to choose between need diabetes supplies and insulin for my daughter to stay alive or food and housing. Without our insurance, even if my husband got another job right away, there is a very real possibility of still being forced to make that choice. I can’t wait until the United States finally stops treating health coverage as a luxury item and starts providing it for everyone, regardless of income, and certainly not tied to a person’s employer.