Chatty Cathy All about Diabetes Posters And Feet

600

Sometimes good conversations come from chattiness – just saying.

My youngest has been complaining recently of intermittent pain in his feet. Both feet. Having two older kids I know about growing pains – also remember vividly the middle of the night howls of pain and calf massages. I can’t recall twin pain though – pain in both legs simultaneously. Also the pains for my two older kiddos nearly always came at night. Thus when Sugarboy began sharing his concerns about pain in his feet I became suspicious. My first suspicions were that he was trying to get out of chores or homework. But then he began complaining when he was doing something he wanted to be doing. Shortly after that he began complaining of the pain at night, in the morning, all day long.

Something is amiss. I put in calls to both his PHCP (primary health care provider) and his endocrinologist. BTW – for those not in the know – a possible (but more increasingly rare) complication of having diabetes for many many years is neuropathy, specifically and most often in the feet and lower legs. Thus, when a person with diabetes is feeling pain in feet or lower legs it isn’t something to be dismissed. Sugarboy is young, has had fairly decent ‘control’ over his diabetes and has ‘only’ had diabetes for just over 7 years – it would be extremely unlikely he would be developing any neuropathy. Still to be safe I did call the endo.

A nurse on his endo’s team called me back today. Of course the pain is gone today. While I’m not a fan of Murphy I do appreciate Sugarboy’s pain being gone (at least for now). Still the nurse and I chatted about the pain: when, where, for how long, type, etc. Also what activities he has been participating in, what types of floors we have in our home, how his sugars were at the time of the pain, etc. She didn’t feel it warranted a visit to the endo office but suggested I do take him to his PHCP to determine if he is experiencing any foot specific issues due to walking barefoot on hard floors or various activities he participates in.

Since that was sorted out I had asked if she could schedule appointments for all three kids in July. I had explained I was on hold for more than 35 min late last week trying to set up appointments and finally gave up. She apologized for the long delay then said how busy the clinics have been due to a much higher number of new patients over the last few months. Really? According to her, the number of new patients each month has been steadily rising for sometime and often the new patients are coming from ERs and even ICUs due to misdiagnosis or just missed symptoms.

So this is where I pipe up and get on my soap box about how if only all general health care providers had a poster to display in every exam room. I’ve said it before how valuable this simple tool would be. How many minutes do patients sit unattended in exam rooms – whether being seen for the sniffles, a hurt back, a well child visit, head pain or injury. Hours and hours are spent by patients in exam rooms. Most visits have absolutely nothing to do with diabetes. Still – while waiting don’t we all take a break from our phones to read various posters on the walls. One poster I have seen in nearly every pediatric exam room I’ve been in is the one with the child in a car seat that talks about current child safety seat requirements. In my general health care providers exam room there has always been a poster of how to do a breast exam and the signs and symptoms of breast cancer.

My point – put a poster in every exam room that identifies the symptoms of early onset diabetes.

  • Excessive thirst
  • Excessive urination
  • Frequent headaches
  • Blurred vision
  • Excessive hunger
  • Fatigue
  • Irritability
  • Pain in legs
  • Rapid heart rate
  • Nausea

The poster should also share that Type 1 Diabetes can be developed at ANY age by any person and is not specific to any body type. Type 2 diabetes is generally developed in later years but both types share the same symptoms of early onset.

For the majority of folks who visit the exam room the information on the poster will be just words on a poster. BUT for some those words read out of boredom could save a life – maybe their own, maybe a child’s. Some little voice in the back of a parents head while they watch their toddler down his 4th glass of water in 5 minutes will say “remember that poster?”

OR

The mom sitting with her pre-teen talking to the doctor about her daughters fatigue, irritability, nausea, and headaches will look past the doctor rambling on about a virus going around to read the words ‘excessive thirst’ and ‘excessive urination’ and will remember how thirsty her daughter was each day after school and how she has heard the toilet flush in the middle of the night more frequently – that mom she will say to the doctor “it couldn’t be something like diabetes, could it?” The doctor will initially begin to shrug it off but then something will click and he will offer the child a cup to fill. Moments later he will see the colors change on a chemical stick that indicate sugar in the urine or worse, ketones in the urine. Instead of being wrongly diagnosed with some obscure virus that pre-teen will be diagnosed early with Type 1 and misdiagnosis will be avoided.

Yes I chatted away with this nurse from my sons endo team and she listened and agreed and then said – you totally need to do this. Me? Do what? I can’t draw. I don’t have the resources.

So here is  my request – if you are blogger – share a blog post about posters in exam rooms. If you are an influential blogger with connections to large groups like JDRF and ADA ask them to take action. For those that don’t blog – send a tweet, share a Facebook status, talk to your local JDRF office or ADA office – do something. If anyone has a witty twitter tag we could attach to this please suggest one. Id love to see this trending so some group that could put their stamp on the poster will pick it the cause. It wouldn’t be a costly project just some ink, paper and distribution however the lives it could save are priceless.

Sorry for the long intro regarding feet – it was just how the conversation started.

I am grateful to the nurse that stayed on the phone during all my soap boxing. Incidentally we also discussed various pumps, CGMs, lack of CGMs for those on medicare and how it came to be that I have 3 kids with diabetes.

Sometimes I am a bit chatty.

That’s Not The Point

I try really hard to give my kids ample independence.

We compromise frequently on when I think they should be checking blood sugars and when they think they should be checking blood sugars. I try very hard not to be too needy of a Dmom – in other words I resist the urge to constantly ask “whats your blood sugar” “did you check” “did you dose” “be sure to dose” “please check your blood sugar”. Of course I still ‘ask & tell’ but I assure you not nearly as often as I feel the urge. Sometimes the kids are happy with their freedom, other times they want help, and then there are the times that despite my best attempts at a hands off approach I’m still not hands off enough for my teen.

So here’s a story I want to share.

My daughter would prefer not talk about diabetes to any of the kids at her middle school. She is still trying to figure out who best to be friends with at a new school, tossing in diabetes is both stressful and embarrassing. Thus she went through a few weeks where she simply wasn’t checking her blood sugars unless she felt funky. That wasn’t the original agreement – the deal was 3 blood sugars a day, mid morning, before lunch and before getting on bus to come home. She agreed to that. She didn’t follow through. When I discovered the discrepancies there was an argument. After voices were lowered we worked out a new compromise. By this time my daughter had started on the Dexcom G4 CGM (continuous glucose monitor). The new deal agreed on by both of us was if Dex was within 20 points at breakfast she could avoid the mid-morning check, still check a blood sugar before lunch and if that was within 20 points she could skip the pre-bus check (BTW – her bus ride home is nearly 25 minutes).

She agreed to the new compromise, all was well for another week. Then her sensor came off – that sucked because numbers were spot on but the tape failed. We have not put on a new sensor. Thus she was asked to check BS 3 times a day until we put on a new sensor. For 5 days I have suggested we put on a new sensor. She loves her Dex and misses it but she has been very busy – homework, outings, TV whatever – always I would hear “not this minute, later, I promise”.

So here we are at yesterday. I had packed her a chicken caesar wrap (corn tortilla, caesar dressing, romaine lettuce, roasted chicken). She loved the wrap I sent for lunch and asked for one when she got home. I happily obliged and at the same time showed her how I made it. Before she sat down with her wrap I reminded her to check BS. Ten minutes later I found her making a second wrap, I giggled and simply said well don’t forget to dose for the second one too, glad you enjoy them.

Fast forward a couple of hours – my middle son wanted a haircut. My daughter wanted to ride along so she could get some school supplies from target. My youngest asked if we could get some Five Guys and Fries. All loaded into the van we were off. I had put each of the boys Dbags in my purse. I didn’t ask daughter if she had hers because every time I did ask she replied with “I never leave without it, relax”.

Haircut – check, Five Guys – check for me and boys, daughter wasn’t hungry (she did already eat two wraps) so she just munched on fries. I reminded all kids to dose and headed to Target.

We wandered Target for a bit picking up more than school supplies. Daughter found me to get money for a Starbucks cookie crumble thing. Fine. “be sure to dose”

Lazy evening at home finishing up homework, watching TV and daughter face-timing with friends. Around 9:30 she came down to say goodnight, “goodnight baby – hey check your BS and correct if you need to please”.

Midnight – (well after midnight) after chatting with a new Dmom on FB for sometime I  was finally headed off to bed. Checked Sugarboy – sailing smoothly in the upper 80s, checked Middles also smooth sailing in the low 100s. Went to check daughter – searched high and low (not a pun) for her Dbag while her cat mewed at me. It was no where. Damn. Back downstairs to check counters and couches. Nothing. Out to van to see if it was forgot there. Nope. Back upstairs to check her bathroom and bedroom again – NOTHING. WTH? Back downstairs to look again. Surely it wouldn’t be in her backpack – she has consumed food multiple times since returning home. Still I checked. nope – but wait – she didn’t empty her lunch box, darn it I have to do it because I also realized I hadn’t started the dishwasher and her containers will need washing. Low and Behold – her Dbag. Thus – no blood sugar checks had been done since noon when she ate lunch. No pre-bus check, no pre-wrap check, no pre-fry check, no pre-cookie crumble check, no bedtime check and still not wearing Dexcom.

Back upstairs expecting to find some awful number.

123photo

Nope – 123. Well crap. I mean great, but crap. The 123 means she managed to dose correctly for all her food but without any blood sugars or a CGM.

The ‘123’ is not the point though.

Things could have gone badly.

While never actually lying to me she left me to believe she was doing what needed to be done – did what I asked and reminded her to do.

Dumb luck doesn’t win prizes. 

This morning I mentioned to her how long it took me to find her Dbag at night. She shrugged it off. I didn’t try to make her lie by asking “hey what was your BS last night before bed?” because I don’t have time for those shenanigans. I asked her to please be more diligent and told her there would be no hanging with friends on Friday if she doesn’t do the bare minimum we had agreed to. Luckily she never asked me what her midnight number was even though that’s not the point.

I started this post – crap I don’t know when – sometime last week. It was mostly done just needed to upload a picture and think of some witty ending.

Skip forward (well backward now) to later that day, after school, after homework, after dinner. Her meter was on the counter along with used test strips. I wasn’t being nosey. I just felt like I should check her meter. Her last check was 5:49pm just before dinner – cool. Her check before that – 5:45am – crap. 12 hours AGAIN. No mid morning check, no pre-lunch check, no pre-bus check, no pre-afterschool snack check and no Dexcom. All the rules dismissed despite the soft reminders that very morning.

My quiet questions to her regarding the missing BS checks were not met with humility. Instead I was accused of being too protective, too nosey, too everything.

So how can this turn around?  Do I just wait it out for the next 3 years hoping that my very smart, very kind, very responsible daughter will emerge from the chrysalis of teenage years unscathed and ready to fly?

God I hope so.

In the meantime – Dex is back in business.

The Remembering

13848270005_2f28c2982f_o

Diabetes Blog Week – Day 3

From Karen’s blog (creator of diabetes blog week) Bitter Sweet > Our topic for today is What Brings Me Down. 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.)

Diabetes and Depression – the double D’s and not in a voluptuous way.

It’s trying. Caring for 3 kids with diabetes. My head is always filled with numbers. Blood sugars, carb counts, dates and times, A1Cs. So many damn numbers. The worst is when I ask the same kid for his/her blood sugar 3 times because I can’t recall from 2 minutes earlier which kid was what number. I’m sure you can imagine the annoyance experienced by one or more of my children at having to repeat the number multiple times. All my kids have perfected eye rolling. I don’t blame them.

There is the first line of sadness at the time of diagnosis. The WHAT? HOW? WHY? One would think the first diagnosis was the worst. It was bad – very bad. I cried to hard so often that most of Feb of 2007 is a blur. I was so angry and scared – oh my God was I scared. On Feb 10th I begged with hospital staff – Please don’t make us leave – let us stay one more night here in the hospital – here where my son is in a bubble of protection. What if I screw up? What if I kill him? I’m not ready to leave. Thankfully they got us approved for one more night. It’s been over 7 years and my son is thriving. I’m surviving.

The second diagnosis – caught much earlier because I saw between the lines. I wasn’t scared anymore but I was beyond angry. I cursed God. I flipped him off. WTH? The sadness was different. She is my only daughter. She is my first-born. It wasn’t as though I loved her more than my youngest son. It was just I was really pissed off. After Sugarboy’s diagnosis I grew in my faith. I devoted more time to church and felt like I was growing spiritually. Then the second diagnosis. Screw Him. I’m not so angry anymore – well not at Him at least. I know it isn’t fair or right to think it, but I worry more for my daughter than my sons. She has always been a perfectionist. Didn’t walk till she could run. Didn’t talk until she could carry a conversation. Honestly I worry she makes diabetes harder for herself than it has to be – or I did. Now I worry that as a teen she is ignoring it too much. Back to why I sometimes think diabetes is harder for girls – well there is the obvious – they are the ones that carry another life inside them if they choose to have children. Unlike what Steal Magnolias would have audiences believe – women with diabetes can and do have very safe and successful pregnancies. Still its harder. Diabetes management is harder in general for girls IMHO – monthly hormone changes, body image challenges, and being perceived as broken by some. Men with diabetes have huge challenges too but sometimes a man who is perceived as broken can be more attractive to women. (please don’t bash me for this – it’s an opinion based on life experience) Thus I was and still am more angry and sad and worried for my daughter. It isn’t right and isn’t fair but its true. Even with all of my worry and anger and sadness I see my daughter grow – she is strong, she is brave and she is my everything.

Third diagnosis. I didn’t have a huge WTH moment with Middles. I watched it coming. For over a year I watched. I prayed (just because I was ticked at the big guy doesn’t mean I stopped believing). I felt powerless. It came. Without all the pomp and circumstance of the 1st and 2nd diagnoses (not that the first two were in any way celebrated) – it came none the less. Regardless of the nonchalant way my middle son was diagnosed I was no less angry and no less sad. Just not surprised. It didn’t hit me like a Mack truck on a random Wednesday or lazy weekend – instead it was more of a steam roller flattening me.

I think I’ve digressed a bit. I think Karen’s intention for this prompt was more about what gets me down currently, rather than the past. The thing is – I still feel it all. Maybe not every time but often when I tiptoe into my kids rooms to poke fingers, when they wince at a new infusion set, when they are ‘Hi’ and when they are dangerously low. I feel the anger, the frustration, the sadness – it never really goes away. Knowing that I can’t make it go away anymore than I can make diabetes go away – I can’t forget. I don’t forget falling asleep in my youngest sons bed the first night he stayed in the hospital (his dad was with him – I was home with my older two) smelling the dried sweet smell of his urine that had soaked thru his pull-up the night before (hadn’t had time to wash sheets before heading out to the doctor then heading to the hospital that morning) holding his magic blanket wondering if he missed it and considering driving it up to the hospital. I don’t forget the three hours between 4am and 7am on April 19th that I knew my daughter had diabetes but refused to leave her side – to get out of bed – to get a spare meter – choosing instead to only have 1 child with diabetes for those 3 hours knowing that when she woke she would be high and we would be going to the hospital (she had not been sick. I knew I was catching it early – I knew she wasn’t in immediate danger but I still knew). I don’t forget the call I received while at Diabetes camp in Tx from the folks at TrialNet telling me my middle son failed his last OGTT – that his blood sugars were indicative of early onset diabetes or the spiral of depression that engulfed me that week or the three weeks after we returned home before it was confirmed or the three weeks that followed his official diagnosis as I felt my marriage and life falling apart due to stress and anger and sadness. I weathered the storms each time. I likely grew stronger from each but the memories they don’t fade. So while ugly blood sugars, ignorant people, sleepless nights, and pure exhaustion get me down on any given day or hour it is the memories that trigger the real pain.

Thankfully I am writing this post a day late and I know that the next post I write is about what gives me strength so I won’t dwell in this ugly world any longer than it takes me to hit ‘publish’ because in the following moment I get to write how none of this ^^^^ keeps me down despite the pain or the remembering.

Conversations With Strangers

13848270005_2f28c2982f_o

Diabetes Blog Week – Day Two – A Poem.

Conversations With Strangers

Can they eat that?

Yes they can.

Is that some sort of Mp3 player?

No, its his pancreas. 

Doesn’t that hurt them?

Sometimes. 

I bet they get used to it.

Sometimes.

Will they grow out of it?

No.

But they’re not fat.

It’s not a ‘fat’ thing.

I heard cinnamon will cure them.

No it won’t.

Maybe they should try a carb free diet.

Won’t cure diabetes.

So your daughter shouldn’t have kids?

She can have children.

Didn’t you breast feed?

I nursed them all for 18 months.

Shouldn’t they do that in the bathroom?

No. they’re good here, thanks.

My grandpa had diabetes, lost his leg before he died.

Sorry for your loss. 

You know diet soda is poison. 

Thanks for your thoughts. 

At least it’s not cancer.

Yes, at least it’s not that.