Correct and Move On. (or what happens when it feels like you can’t)

Ugh. It’s me again. Venting. Again. I’m so tired (literally and figuratively) of crazy blood sugars! Last week Angelina started experiencing incredibly stubborn blood sugars between 11p-3a ish. I thought I knew the culprit so I just treated the lows and tried reduced temp basal rates. Then Monday she got sick and was running higher levels all day long. The outside culprit that I had blamed for the nighttime lows was no longer present so I was confused after a day spent battling numbers in the 300’s, that at night she was still dipping down drastically between 11p-3a and needing low treatment and reduced temp basals. But, come 3a the illness/stress hormones seemed to kick back in and if I didn’t start her back on increased temp basal for that she would wake up very high in the morning. So, needless to say I haven’t been sleeping very well lately. We did have 1 night where I didn’t have to reduce her basal and she ended up perfectly in range and I thought “Yay! The lows are over!” Then last night it happened again and BAD. Reduced basal drastically, especially considering how much extra basal she’s still getting during the day, plus gave multiple low treatments which seemed to move her barely at all.

So, tonight when she was low at bedtime (earlier than usual) I went ahead and reduced her basal rates for a few hours hoping that it would prevent those lows we’ve been seeing a little later on. She also had a single juice box at 10pm for a 63 bg. The juice only brought her up about 25 pts after 30 minutes, which is not as much as I’d like, but I figured I would wait and see what reduced basal would do. Well… here I am, 1:40am and her BG is 218!!! I stopped reduced temp basal around midnight when she hit 165 thinking that the “normal” downward spiral we see about that time would level her off or possible drop her slightly. Nope. Still going up. I have no idea what is happening. I am tired of this. I HATE DIABETES RIGHT NOW!

And saying that, if it’s not clear, you can envision the scene in the Jim Carrey version of The Grinch where he is going through the phone book saying “Hate, hate, hate, LOATHEEE ENTIRELY…” that is me right now, and diabetes is every entry in the phone book! I am normally a pretty positive person when it comes to diabetes care and a wise D-Mom told me early on “Correct and move on” and I try to live by that as much as I can. Because if you don’t just correct what’s happening right then, and move on, diabetes will take over your life in a bad way. But maybe it’s because it’s late and I’m tired, but know that I still have work to do before I can rest, and even then I will still probably be up in 2 hours doing more diabetes work. Maybe I am just feeling sorry for myself right now. Whatever the reason, I know these feelings will pass. I know that soon, maybe not tomorrow, or the next day, but soon, things will go back to “normal” and diabetes will return to being the passenger in the back seat, rather than the driver of our lives, but tonight is not that night. And tonight I am angry and sad and feeling burnt out. For myself and for Angelina.  I’m angry for the times like this past week, where diabetes has seemingly taken over everything.  I’m beyond tired. I’m exhausted, mentally and physically.  I didn’t really realize it until just now.

I just wish, more than anything, that this monster would leave my child’s body and we could be free of it, even for a day.  Even an hour.  Because even on her best days, it’s still there, lurking in the shadows, waiting for one small misstep.  An incorrectly counted meal or snack.  An incorrectly calculated dose of insulin.  A spontaneous stop at the park for half an hour.  All of it, any of it, can cause our carefully balanced house of cards to come tumbling down.  We must always plan for the unplanned.  Expect the unexpected.  Constantly be on our toes and monitoring blood sugar levels.  Making sure that I’m never without a quick source of glucose at any given time, for any given activity, even a quick trip to the grocery store.  Especially for a quick trip to the grocery store.

Constantly trying to remember what day it is today and what day it was when we last changed her infusion set or her sensor.  Or at least trying to remember to set the reminder that will remind me when it’s time to change these things.  This afternoon she asked for a glass of milk.  As she was bolusing she said “Oh, I have a low reservoir”.  There were 0.75 units of insulin left in her pump. And I sat there thinking hard, trying to remember what day it was and when we last changed her site.  Fortunately it was Monday, she just went through her insulin faster than usual because of being sick and needing extra insulin all around.

Two hours now since I increased her basal insulin.  Blood sugar has not gone down, but continues to steadily climb upward.   235 currently.  I guess that means that the lows aren’t coming tonight.  Time to correct and move on. To sleep.

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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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Blue November: Diabetes Awareness Month Start Tomorrow

November is upon us.  I am going to be participating in the Project Blue November Instagram Challenge.  See below for the prompts and a URL for the PBN instagram challenge page.

If you’re feeling particularly like following my progress check out Chasing Lows Instagram profile at: http://instagram.com/chasinglows  or see my Instagram widget on the left sidebar further down the Chasing Lows homepage.bluevember

I also still have the “Ask A D-Mom” giveaway up on my page until November 30, please submit your questions or share on Twitter, Facebook, etc. to enter to win!

Mama Said There’ll Be Days Like This

Okay, now that the day is almost over, here is what my day looked like:

Around 5:30am Angelina’s Dexcom alarmed high (over 250mg/dL) after being a steady line at around 130mg/dL since the night before. I hit the snooze in a semi-concious state and fell back asleep. I woke up about an hour later in a panic as I realized that I had snoozed a high bg and didn’t get up to investigate. So, at 6:45am I got up and at that point Dexcom was saying 366 mg/dL. I went to check on Angelina and she was not in her bed. She was awake on the sofa and acting like she was hiding something under her blanket. I pulled the blanket back to find her lying on my ipad, which had had a full battery when I went to bed adn now was at 6%. She apparently had gotten out of bed shortly after David and I went to bed around 11pm and had stayed up the entire night playing on my ipad. Around 5am she decided to eat muffins and not give herself any insulin for it. By 6:45am when I checked on her her meter blood sugar was 416 and she was insistent that she did not eat or drink anything, but was surrounded by muffin crumbs and an empty juice glass and a carton of juice that was half full the night before was sitting empty on the kitchen table. (Fortunately it was low carb juice, but half the carton was still probably about 20-30 carbs, certainly an amount that was worthy of needing insulin.

I yelled at her for lying to me about food and also about getting crumbs ground into our brand new sofa. This woke David up and he came out to speak with Angelina while I cooled down. He and Angelina talked until it was time for her to get ready for school and she left around 8am. Blood sugar at that point was down to 350 and falling quickly.

After she left David and I got ready for her 504 meeting at school and I had a sort of breakdown because I was going into that meeting to convince them that she is responsible with her diabetes, despite other areas where she does not always show responsibility and that she is perfectly capable of being mostly independent in her diabetes self-care during the day as far as checking her blood sugar when necessary and taking steps to correct lows or seek nurse supervision for giving insulin doses for high blood sugars or when she eats or drinks things with carbs in them. Clearly, last night/this morning she was not showing that responsible side that I was advocating for.

However, it became mostly a non-issue and aside from one fundamental disagreement, which was quickly corrected and remedied, the meeting went relatively smoothly and came out mostly in favor of the accommodations that we felt necessary for Angelina to get the best public education she can, while still not being so different as to be alienated from her peers. We are working very hard to balance diabetes care with “life” and maintain a semblance of normalcy without letting diabetes rule every aspect. The school of course mostly considers their liability if something were to happen to her and doesn’t factor in how their “standard protocols” effect her emotionally, and thus behaviorally and socially, which are all very important parts that also need to be managed along side the physical aspects of living with diabetes and being a student.

After the meeting I had some quiet time and had a little cry. I then headed to my therapist’s appointment, which couldn’t have been timed better. By the time I got to my appointment I was in a much better place, emotionally speaking, and I had a great conversation with my therapist about the happenings of the day.

I went home to relax and rest, stopping on the way to pick up some froyo.  Around 2:30 David called me to tell me that a warehouse down the street from his work was selling a bunch of patio furniture at 90%ish off and did I want some chaise lounges for the patio?  I had until 3pm to come with cash and the truck and his work is a minimum 20 minutes drive away from home.  I miraculously made it there before 3 and we loaded the truck up with 4 new chaise lounges and a new patio coffee table.  All for the bargain price of $80.  This is all stuff that was stored to be sold at Home Depot from previous years and has since been discontinued and was never sold, thus the warehouse sale at deeply discounted prices.

After we got home we decided to go to Home Depot and check for cushions/covers for 2 of the chairs since they are metal slatted ones (the other two are the mesh style).  No luck finding anything since it is now October and the seasonal section of every store is now filled with fireplaces and space heaters, not patio furniture and accessories.

We came home, ate dinner, and had an uncomfortable conversation with Angelina about being up all night playing on my ipad and not sleeping and what the consequences of her actions were.  She had a bit of a “shut down” during the conversation and seemed to have fallen asleep.  David and I took that time to put the furniture together outside and sat out in the patio for a bit.  Angelina joined us until we all got chilly from the fog that had rolled in after the sun had set.

And here I sit, typing about my day.  I feel… peaceful. Despite the turmoil, ups and downs of the day, I feel at peace with how everything turned out.  I feel like diabetes was only a part of our day, and not the center even though the day started out in a way that could have been all about it.  The high blood sugar was a nuisance, only because there was no reason for it and it interrupted my sleep.  But, it was a “correct and move on” moment.  The 504 meeting made me feel anxious, but in the end I was able to calmly and firmly assert myself on Angelina’s behalf and I left feeling like I won an Olympic gold medal.  I didn’t leave flustered, frustrated or angry.  I felt empowered and proud of myself for being articulate and keeping things together and speaking in a way that said I wasn’t taking no for an answer, without coming off as a crazy, overzealous and overprotective parent.

Good Things

If you’ve read my previous posts, you know that Angelina started middle school this year.  Middle school has brought with it changes in how her diabetes is treated at school, and how much she is able to do independently.  We struggled last year to fight for her right for independence and honestly, we failed.  As we moved into this school year I resolved to be a better advocate for her at school and to insist on more independence, regardless of what happened last year or what the school nurse’s opinion was.  I also brought David along with me on the first meeting this year, as support, but also to show that we are united in this and even though he was the only man in the room, there’s something about a dad attending this type of meeting that seems to communicate “We mean business”.  (More on the injustices of a patriarchal society later.)

I went into today’s meeting prepared to battle and was pleasantly surprised to find that it wasn’t totally necessary.  Last year we had problems, not so much with the school administrators, but with the district nursing staff who seemed to think they understood our daughter’s needs better than we or her physician do.  Who seemed to think that their interpretation of the doctor’s orders were the only correct ones, despite the fact that the doctor and I discussed the orders and *I* pretty much wrote them (read: told her what I would like them to say) and she added her signature for weight and authenticity.  Yet, I was told that I did not know what the doctor meant, only the nurses did, since they are nurses.  You can understand why I would be apprehensive going into this year’s meeting.

However, the district nurse supervisor has changed.  And not only that, but the district nurse supervisor is also the overseeing nurse for Angelina’s school, which means we have only one district nurse who we have to deal with, instead of two.  And she was AWESOME.  I was nervous, certainly, going into the meeting.  The nurse out both David and I right at ease and shared how she has twin 10 year old sons at home and she understands, from a parental perspective, how difficult kids this age can be.  And then the meeting started.

First off, the assistant principal had another meeting to attend one hour after our meeting began so she was very concerned about time.  Of course, she then proceeded to read last year’s 504 plan line by line rather than just diving into the changes that I had made to this year’s 504 plan and go over the things that were remaining the same.  I will never understand when people say they are short on time and then choose the option of doing things in a way that takes the longest amount of time.  We finally got around to the revised plan and discussed changes.

Something that became immediately apparent is that the current district nurse supervisor was not consulted before the AP made changes.  Instead, she had consulted the nurse we had last year.  And the changes they made were terrible.  The first section essentially said Angelina couldn’t do anything on her own, which is not at all what the doctor’s orders said.  The look on the AP’s face when I said “No. She will test her blood sugar independently. She doesn’t need to go to the nurse or to have the nurse come to her for that.” was priceless.  She sputtered and then went to get Angelina’s diabetes care book from the school nurse (who was not in the meeting) that contained her doctor’s orders.  Clear as day the doctor’s orders say “She is able to be independent with blood glucose testing, CGM trends and alarms.”  Verbatim from the doctor’s orders.  How anyone can get “needs to be supervised” out of that statement, especially after having this argument ad nauseam last year, is beyond me.  And if there was a question, this line from the doctor’s orders should serve as further proof “Check blood glucose with meter brought from home or additional meter left at school. this meter should be allowed to be carried by Angelina.”  It was even more humorous when the AP turned to the DNS and asked her to which the nurse replied “She shouldn’t need supervision for that.  It clearly states in the orders that she may be independent.  I have elementary kids who do this independently, it’s not hard.”  Oh my goodness… where was this nurse last year? I sorely needed her.  And that was that.

The rest of the meeting went rather smoothly.  There were a few tweaks that the AP had made on top of changes that I had made.  Some of them were changed back to my original revisions, others additions were kept.  All in all, the meeting only ran twenty minutes late.  We didn’t sign anything today because of the changes that need to be typed in, and then we will reconvene to sign everything.  I just have to make sure to go over it all with a fine tooth comb because I noticed that some of the sections looked mostly the same but a few words were changed that totally changed the meaning.

Q&A: Ask a D-Mama

We are just over one month away from National Diabetes Awareness Month in November.  As someone who has made being educated about all things diabetes a priority, I’d like to start a Q&A series about diabetes on my blog.  No question is off limits if it is related to diabetes.  The point of this will be to educate and to hopefully dispel some common myths about Type 1 Diabetes.  I don’t care how much or how little you know about Type 1, please feel free to ask questions.  If I don’t know a definitive answer off-hand I will research it and answer to the best of my ability.  My hope is to encourage people to ask questions, and to avoid making assumptions if they do not deal with diabetes first-hand.  In addition to answering questions I will be giving away a mystery prize pack to one lucky winner (Est. value $20).  Entries will be tracked using Rafflecopter and will run through Nov 30, 2014.  Click on the link below to make sure your entries count!  Options for entering include: Commenting on this blog post, emailing your questions to chasinglows@gmail.com, tweeting about this blog post and giveaway along with your question, liking “Chasing Lows” on Facebook.  If you would like your question to remain anonymous please use the email option and state in the email that you would like to remain anonymous.  All questions and answers will be posted over the next two months in separate blog posts.  Please share this post with friends and family members. All are welcome to enter the giveaway by asking their own Type 1 Diabetes related question!