Sunday, January 29, 2012

One Week to A1C Day

I know it isn't a true indication of diabetes "Control" - scratch that - Management. What the heck is control anyway? A very cool, very smart, very funny man known as Diabetes Dad posted a funny on FB last week. I will copy it below but know I don't claim any credit for it and further I can't find where I copied it from other than it was a link on the FB page of  Tom Karlya .

If I can find said link I will share it because aside from the above picture there were others. See I am a huge LOTR fan (not to mention the small fact that Viggo Mortensen who played Aragorn is not the least bit hard on the eyes). Anyway for those that have not memorized the LOTR movies, there is a scene in which it is told that to destroy the ring it must be thrown into the fires of Mordor. "One does not simply walk into Mordor. Its black gates are guarded by more than just orcs. There is evil there that does not sleep, and the Great Eye is ever watchful. It is a barren wasteland, riddled with fire and ash and dust, the very air you breathe is a poisonous fume. Not with ten thousand men could you do this. It is folly." The most difficult thing imaginable right? Thus one does not simply "Control Diabetes". Not that managing diabetes without letting IT manage your life is the most difficult thing imaginable. I have met and know many whom manage IT very well but "control" -  I don't know that word will ever fit. Here is where I admit that I have not merely digressed but have actually jumped trains from the point of my original post and will return you now to the regularly scheduled programming.

Both of my kids have their quarterly Endo appointments a week from tomorrow. (Albeit not with their regular Doctor - I was notified that she is leaving the practice and this saddens me deeply and I dearly hope she will stay local with a new practice so we can follow her - (insert sigh affirming hope and recognition that I have strayed from topic). This last week has been a diabetes roller coaster riddled with failed sites and forgotten boluses. Multiple huge highs for both kiddos and a number of over corrections resulting in some ugly lows thus causing rebound highs. I'd like to get off this ride please.

I know I am not alone when I feel as though all things go kablooey (medical term) the week or two prior to an endo visit. Knowing (or rather having been told by various diabetes educators and doctors) that just 2 missed boluses a week can result in an increased A1C by as much as .5%. We don't usually miss 2 boluses a week - normally - but the week or two before the endo visits we sure seem to. Again - the A1C (Glycated Hemoglobin average over a 2-3 month period) - is not a perfect report card regarding diabetes management - however it always feels like one. The A1C is considered a fair indicator of future complications though from my understanding. Ideally I should try to keep my kids A1Cs in the low 7 range (normal non-diabetic range is 4-6). I've never been pushed to try to get them to the normal range because it is believed that having a "normal" number would likely mean a great deal of low blood sugars or higher risk of low blood sugars since the A1C is an average of blood sugars over the 3 month period.

I know that most that would care to read this know all this and likely know a great deal more than me. This post serves two purposes - well turns out three but the last was by accident. First - I get to vent and talk through things in my head. Second - it opens the door to those who are smarter than me or have valuable information or thoughts to share to leave comments that I (and others) can learn from. The third and accidental purpose was to allow me to share a picture of Viggo.

Still learning this blog thing - thanks for checking in.

Friday, January 27, 2012

WTH - my most frequently asked question.

I'm still new at this blog thing - wish I could say I will be as diligent as my favorite bloggers and blog everyday but alas I am a mom of 3, wife, substitute teacher and not very organized regarding any of the above mentioned roles. I started this post yesterday morning and saved it when duty (also called laundry called) - the evening discussed was not last night but the night prior.

At 8pm (bedtime for my two elementary aged kiddos) we checked my dear son's BG. He was 242 - huh? When attempting to correct his BG with insulin it was discovered that he had not reattached his pump after his shower an hour prior. My dear husband asks him to retrieve his pump from the bathroom upstairs prior to having a cup of milk before bed and all of a sudden everything hurts. His hair huts, his head hurts, his legs hurt, etc. No mention of these alignments while watching TV before bedtime was announced but now it seems his entire little body is on strike. He (ds) decides to skip the milk and requests to be carried up stairs. I holler up a reminder to my husband to attach pump and provide a correction (insulin dose). I go up a few minutes later to check that they brushed teeth (my question - "did you brush your teeth?" Nearly always is an answer in the negative at which time I make my boys get out of their beds and brush their teeth - at least those that they want to keep.) and tuck them in for the second time really since I nearly always give hugs and kisses prior to asking the teeth question. Thus a second round of hugs and kisses is needed - likely their plan.

My ds with D talked his way into my bed because his legs and head hurt. My husband and I were not going to bed but we let him lay down in our bed. At 10pm I came up to go to bed. Checked my dear daughters BG and she was right as rain (YES!), then on to my dear son. When I came into the room I could hear him grinding his teeth. That isn't a good sign - he always grinds when he is high at night. He was 432. Thus the WTH?? He should have been in the 100s. Check the history on his pump - no correction - oops daddy forgot. But why 452? Why not just still be in the 200s? I will likely never fully understand where some numbers come from. I get the sky high numbers that come from a missed bolus - yes we have missed doses of insulin, I get the high numbers that come with sick days - dang illnesses. I get the high numbers that come from infusion sites gone bad - lack of organization leads to sites left on for more than the recommended 3 days. I get high numbers due to the beginning stages of puberty in my dd - Lord help me when we are in the thick of puberty. I get the high numbers caused by eating high fat/high carb meals like pizza - although we are getting better at combo bolusing. What I don't get are the numbers that seem to have no rhyme or reason.

Thus, alarm was set for midnight. Midnight check resulted in in 231 so my ds was going down but n additional correction was needed. Alarm set for 2am. 2am check came up with 107. Checked dd at the same time and she was within range so I canceled the regularly scheduled 3am check and took pleasure in the following 4 hours of uninterrupted sleep.

I know not all parents of cwd get up every night, and not all diabetics themselves get up to check every night. I know many parents and and patients use CGMs (continuous glucose monitors) that alert them to rogue blood sugars. I pass no judgement on any of the decisions regarding night checking. I don't always check at night. Although the nights that I don't have at least one if not multiple alarms set are few and far between. Sometimes the moon and stars are aligned so perfectly that I allow myself longer uninterrupted sleep. On those nights I don't go to bed till midnight, both kids must have numbers within range, no IOB (insulin on board) and it must have been a fairly average day with no super long periods or sitting or overly strenuous activity. You can imagine how often all the stars and the moon align in this fashion for not just one Type1 but two. Why do I set alarms and get up so often - because I feel better about them and their diabetes knowing they are safe. Knowing that if a blood sugar is high 200+ I can correct it and help keep their A1Cs (yes I know not a perfect indication of diabetes care - but a good indication of future possible complications if regularly too high) more in check. I recently spoke with a parent whose son is nearly an adult. He was diagnosed as an early teen. Her doctor told her that night time checks were only necessary the first couple weeks post diagnosis. Her son's A1C varies between upper 7's and low 10s. What a wild roller coaster. Yes puberty is playing a large role in the crazy numbers but still - I hope my kids will not be so wacky.

One day I hope to get a CGM on both of my kiddos. Right now the fight is ugly. Neither of them want to wear or carry an additional device. They already wear their pumps and take their diabetes packs (meter, poker, strips, juice, extra batteries, extra lancets, and fruit roll ups) every where they go. My dd who is now 12 frequently complains about the profile of her pump (although I believe Animas has the lowest profile). She wants her skinny t's and her skinny jeans to be seamless - not possible with a pump attached thus wearing the Dexcom (which we purchased and has collected dust for 2 years) is not a happy thought for her.

Well this has been a babbling mess. Thanks for baring with me as I learn how to blog effectively.

Tuesday, January 24, 2012

So much for not knowing what to write

So this is my third attempt at a blog. I started one years ago called Crazy is as crazy does but forgot my login and password after not having posted in over a year - so much for that - blogger couldn't help me because I didn't even remember what email I opened it with. Then about a year ago I started one called Several Shades of Crazy but again didn't post and forgot login and password, forgetting this one makes me a little sad since I loved the name of it. So here we are again - third time’s a charm. I'm fairly pleased with the title of this blog Momof2T1s - I use the same name for Twitter - not that I have logged on to twitter in the last 2 years. No I am not normally so disorganized and non-committal - wait yes I am. Anyway - this is my newest and hopefully successful attempt at blogging.

I opened the account yesterday using an email that I use frequently so that shouldn't be a problem to remember. I haven’t set up much as you can see - no gadgets or whatever - I don't even know what a gadget is, something like a widget possibly that I learned about in my undergrad years but never have been able to purchase - or maybe I learned about widgets while in technical training for the Air Force while learning how to be a contracting agent. Either way I’ve never actually seen a widget. I digress. So I opened the blog but then sat wondering what I would have to write about. I read a few other blogs and the bloggers I read seem to have all there ducks in a row so I was feeling like maybe I would be in over my head. Then today happened - almost seemed orchestrated so that I would have something to blog about. (disclaimer - I see that there is a spell check available but wanted to warn readers ahead of time that I really am not a fantastic speller. Please forgive me if I miss a misspelled word.)

So back to today. If you haven't read my ultra short bio let me give you an abbreviated portion of my already abbreviated bio. I am a happily married (98 percent of the time) 30 something year old mother of three. I have two dogs (one small and fluffy the other fat and furry) and two cats (one old and grouchy the other young and insane). Two of my children have Type 1 Diabetes - thus Momof2T1s. My youngest child (son now 7) was diagnosed at age 2, my oldest child (daughter now 12) was diagnosed at age 9 - two years after my youngest was diagnosed. That fact always surprises people, they (the people I referred to) always assume my oldest was diagnosed first. Lesson one in Diabetes - there is no rhyme or reason for 90 percent of the crud that goes along with it. My middle kiddo (son now 9) is just that, a middle child - stuck between an older and younger sibling that both have Type 1 diabetes and both are in advanced classes in school. My middle child really could use a blog all about him - It would not be difficult to find topics to write on.

Again back to today...

Today started at 1am when my alarm went off to wake me so I could check blood sugars (for those that are not a parent of a child with diabetes 'CWD' or a diabetic yourself - middle of the night blood sugar checks are common place. So at 1:00 in the morning my alarm sounded, it didn't sound with a fun song from the radio like normally because one of my lovely children likely played with it so instead of one of todays pop hits I woke to static. So I stumbled into the master bathroom to turn off the alarm - yes I keep my alarm in the bathroom thus assuring I will get out of my bed to turn it off and take care of business. If my alarm is next to my bed I will be able to hit the snooze and/or off button in less than a half second while still asleep. After turning off said alarm I started to undress rather than exiting the bathroom to check blood sugars. I turned on the shower and grabbed a towel. I fully intended to get ready for the day. In no way will I ever suggest that being the parent of a CWD is more difficult or even close to as difficult as being said child, however I do sometimes suffer from diabetic brain (possibly like how some men suffer from sympathy pregnancy when their wife is with child - is that a real thing?) I realized my folly just prior to getting in the shower. Thus I turned off the shower, redressed and instead of checking blood sugars I feel back into bed. (The guilt of this and other times like it plagues me frequently). When my next alarm sounded at 6:00 in the morning I shot out of bed realizing my 1st mommy fail of the day and rushed to check sugars. Youngest at 67, oldest at 234. Thank goodness for guardian angels.

On to breakfast, since the youngest was at 67 I didn't dose him insulin prior to his breakfast. I also allowed him waffles with syrup and made him smoothie. This breakfast contains about 75 grams of carbohydrates. Normally with a blood sugar below 70 we would give 15 grams of carbohydrates, wait 15 min and recheck the blood sugar. Since it was breakfast time and 67 isn't terribly awful we moved forward with breakfast breaking protocol. Remember how I said I didn't pre-dose since he was a little low - well that is also outside the normal routine. Thus at 8:30 - two hours past when he ate breakfast and an hour after he began school it dawned on me that I didn't dose him for his breakfast. Queue call to school nurse to inform her of my second mommy fail and ask her to check my sons blood sugar at that time rather than waiting for schedule test time. I estimated that he would be in the 500's (very very bad number - normal is 70-120), I asked her to please get him a water bottle and give him a no-carb snack for snack time. When I checked back with her 30 minutes later I learned his number was indeed over 500 - 518 to be exact. Second dose of guilt for mommy today.

Guilt sucks. I can see how guilt has value – a person commits a crime, feels guilty and confesses – thus justice will be served. However as parents we often feel guilt not because of an intentional wrong doing but as a result of a perceived failure. A child is behind in reading thus the parent may feel guilty for not reading often enough to the child when he or she was younger (yes this is me too and I will likely not address these specific feelings of guilt in this blog). Seeing a picture of the food pyramid may spark feelings of guilt by the parent for not providing the recommended servings of fruits and vegetables everyday (also me although since this deals with nutrition there is a good chance we will revisit this). A parent works long hours either outside the home or possibly in the home as a domestic engineer and when asked by his or her children to play a game the parent tells the child he or she is too tired or has work to do (also me on more occasions than I care to admit). My point – even as parents of typically developing children that do not have special needs (cognitive or medical) we are surrounded by opportunities to feel guilty; add in the responsibilities of a parent of a CWD or special needs child and we have guilt overload. I tend to forgive myself fairly easily noting that I am only human but I don’t bury the entire hatchet – I leave the handle sticking out so when days like today come along with two large FAILS all the past guilty feelings involving diabetes, fluency, playtime, nutrition, etc. come slamming into me and knock me flat on my bum.

Normally on days like today after putting the kids in bed I would retreat to my shower. It isn’t a super fancy shower but it does have a bench built in. I would normally sit on said bench while the hot (nearly scolding) water pours down on me. Sometimes I would cry, sometimes I would just sit trying to clear my head by focusing on how badly I need a pedicure (I’ve only had two pedicures in my life – I’m very ticklish). While those 45 min do help calm me and do provide some therapy I felt like I needed another outlet. Maybe other parents of CWD fight similar battles. Actually I know they do, I’ve been to the forums, I’ve read the blogs – I am not alone. Maybe those parents that post and comment find a level of peace from sharing. Insert Momof2T1s blog here. I am hoping I will provide something for others. It may not be helpful information. It may not be knowledgeable information. You may not even find it funny even when some of it is meant to be funny. But maybe someone will find peace in knowing there is someone out there more screwed up than them (see profile pic – when I get one).

Post Scriptum – (Only Latin I know)

Today happened to be a day that I was volunteering with my local JDRF chapter presenting a Kids Walk to Cure Diabetes at an elementary school. The students and teachers at the school were great and I was on fire with my presenting (some days are better with presenting than others based on level of exhaustion, student behavior, migraine level and amount of coffee consumed prior to presenting - that seems normal right?) My nurse at my son's school kept me updated regarding his blood sugars. His sugars responded well to his insulin correction and he did not develop a headache (common side effect of high blood sugar for both my son and daughter). So near the end of the day when I had just finished presenting to the 4th grade a student approached me while his class was lining up. He told me that his dad told him that Type 2 diabetes was worse than Type 1. I responded by saying they are equally bad. Regardless of which type of diabetes a person may have they have equal chances of developing complications such as vision loss, kidney and liver failure, heart problems and nerve damage. I assured the student that with proper care and the good choices regarding medical care, nutrition and fitness a person with diabetes will likely not experience complications due to diabetes. The student thanked me and left with his class. On the way home I spent time contemplating if one type of diabetes is worse than the other. As a mom of two kids with Type 1 I feel somewhat biased and believe Type 1 is worse because people have it for a longer period of time (diagnosed earlier in life normally). However, people with Type 2 often have Type 2 for much longer periods of time prior to diagnosis (some may have it for a decade and not know) thus leaving them a higher risk of complications. Do you have a thought regarding which is worse - is one worse?