I happened to stop by my forums on T1D that I go to here and there..they are awesome for issues...turns out that the pump issue I wrote about before? It was never the pdm device that failed but the actual strips are giving a false low. So if you have an insulin pump that uses these strips or this meter please go to their site for more information!
https://www.abbottdiabetescare.com/press-room/2013/2013-g.html
Fee
11.21.2013
We will, we will ROCK you
We had our 5 month checkup at Dr. Kassar's office. Dr. K is Katie's rockstar endocrinologist. We were so lucky to get him. He's the best there is and he's booked solid. But our family doctor got us in to see him and we are so happy we did. He's very pro pump and pro cgm. Very. Says it's the key to a successful journey with this disease.
We had an a1c done when we were first diagnosed. It was 12.1%. A normal test level is 4.5-6%. That is our target. Her blood sugars on average for those months then was 298. Which matches her fasting blood sugar test. But keep in mind that was fasting. The doctor thinks her blood sugars were really in the 400s for a long time before we realized how sick our daughter was!
From the Mayo Clinic website:
Fast forward to today- they pricked her finger. Katie and I and AnnaGrace waited and worried a bit I think. Katie finally said..I will be happy if it's down 1% to 12. I reply: Hon that's .1% not 1%. We laugh to break the tension. She says ok then if it's 11% I mean. I'm like...I'll be happy if it's down .1%. Everything I read said it takes awhile. The nurse comes in and won't say anything about results. We ask and she says- I'm sorry Dr. Kassar will discuss it with you. I think- oh boy.
Dr. Kassar comes in all smiles...dancing a bit. Says she's a rockstar and the best patient he ever had. He cuts himself off and says..that the change was maybe not the biggest he's seen, maybe there is one other. We have no idea what he is talking about at first. Then he says if her a1c is 10 or 11% they are happy..very very happy. And he says guess what yours was. I'm like 8. He says no I'm sorry you are wrong. I'm like..that's ok..is it 9? he says no- 7.5%.
7.5%!!!!!!!! This is astounding. He's not sure other than one other patient one he has seen that has done as well getting their blood sugars under control so quick. I start tearing up and say it's obvious she has an awesome team who has been instrumental as well as the Dexcom and the pump. But that the true warrior is Katie because she did this. She took it seriously and took her shots and cried through a lot but came out stronger and HEALTHIER. It's obvious. She is tired and exhausted as she finished a straight A semester of HONORS college and working full time but she's not wiped out from the diabetes!
I was telling Kev later and he said...honey she only got the pump in October it obviously was the dexcom. And he's right. That continuous glucose monitor. As bad as the customer service/billing can be and as clunky as it is to insert (not automatic and people hate it because it's painful) it works. It's working and is why she has such tight control now. Does she have highs and lows? yes here and there but overall on average her blood glucose levels are so much better!!!!
Best news ever and reason why we are giving thanks!
We had an a1c done when we were first diagnosed. It was 12.1%. A normal test level is 4.5-6%. That is our target. Her blood sugars on average for those months then was 298. Which matches her fasting blood sugar test. But keep in mind that was fasting. The doctor thinks her blood sugars were really in the 400s for a long time before we realized how sick our daughter was!
From the Mayo Clinic website:
The A1C test is a common blood test used to diagnose type 1 and type 2 diabetes and then to gauge how well you're managing your diabetes. The A1C test goes by many other names, including glycated hemoglobin, glycosylated hemoglobin, hemoglobin A1C and HbA1c.
The A1C test result reflects your average blood sugar level for the past two to three months. Specifically, the A1C test measures what percentage of your hemoglobin — a protein in red blood cells that carries oxygen — is coated with sugar (glycated). The higher your A1C level, the poorer your blood sugar control and the higher your risk of diabetes complications.
We had an a1c done when we were first diagnosed. So why do this test? Because it looks at your blood sugars for the past few months rather than just at a series of daily blood sugar levels. It's a great test to see how well your diabetes plan is working or not working. For type 1 diabetics - she will be tested about 4x a year. Type 2 diabetics should be tested about 1-2 times a year. I remember posting the image of the thermometer of the % of a1c level and Katie's was off the top of the thermometer at 12.1%. It was scary and a good picture that she was seriously ill.....Fast forward to today- they pricked her finger. Katie and I and AnnaGrace waited and worried a bit I think. Katie finally said..I will be happy if it's down 1% to 12. I reply: Hon that's .1% not 1%. We laugh to break the tension. She says ok then if it's 11% I mean. I'm like...I'll be happy if it's down .1%. Everything I read said it takes awhile. The nurse comes in and won't say anything about results. We ask and she says- I'm sorry Dr. Kassar will discuss it with you. I think- oh boy.
Dr. Kassar comes in all smiles...dancing a bit. Says she's a rockstar and the best patient he ever had. He cuts himself off and says..that the change was maybe not the biggest he's seen, maybe there is one other. We have no idea what he is talking about at first. Then he says if her a1c is 10 or 11% they are happy..very very happy. And he says guess what yours was. I'm like 8. He says no I'm sorry you are wrong. I'm like..that's ok..is it 9? he says no- 7.5%.
7.5%!!!!!!!! This is astounding. He's not sure other than one other patient one he has seen that has done as well getting their blood sugars under control so quick. I start tearing up and say it's obvious she has an awesome team who has been instrumental as well as the Dexcom and the pump. But that the true warrior is Katie because she did this. She took it seriously and took her shots and cried through a lot but came out stronger and HEALTHIER. It's obvious. She is tired and exhausted as she finished a straight A semester of HONORS college and working full time but she's not wiped out from the diabetes!
I was telling Kev later and he said...honey she only got the pump in October it obviously was the dexcom. And he's right. That continuous glucose monitor. As bad as the customer service/billing can be and as clunky as it is to insert (not automatic and people hate it because it's painful) it works. It's working and is why she has such tight control now. Does she have highs and lows? yes here and there but overall on average her blood glucose levels are so much better!!!!
Best news ever and reason why we are giving thanks!
Device malfunction
Why do all things like malfunctions on durable medical equipment (CGM and pump) seem to happen when you are far from home..on a weekend morning when maybe their is no support staff to help? Katie realized when we were visiting our friends in Elkhorn that her dexcom and pump were not in sync blood sugar-wise. Her dexcom was saying high but her pump was saying low...everytime Katie tested her blood it was coming up LOW so she was eating and eating in the morning. It was weird because she was getting loopier and loopier too.
Understand- the Omnipod pump has it's own built in blood glucose monitor. So she's able to put a test strip into the pdm and then test her blood and bolus (give instant insulin via a pump pod she wears) or adjust her basal (continuous stream of insulin through the same pod) as needed. So her pdm was telling us low. I asked her where the control fluid was. Omnipod also provides a separate blood glucose monitor because let's face it..if what happened -happens to Katie's monitor you need to have backup. Not to mention that just because she has this pump means nothing less for carrying items. She still carries needles now in addition to her humalog so she can instantly inject insulin if needed.
So she couldn't find her control fluid..didn't know if she had it. Didn't have her spare glucose monitor (Really?! I asked only 20 times if she had everything she needed..I think I'll give her a note with everything listed next time!) And we are in the country on a farm. I could have driven into town and BOUGHT a new monitor but that was annoying me. So even though she was annoyed (high blood sugar which we didn't know at this point) at having to dump her purse..I made her do it and lo and behold there is a control bottle.
The control fluid is red and is dropped onto a strip and then you can make sure your meter is reading correctly. Based on my limited research the meters are allowed by the FDA? to have a certain % of error..not really cool and the range is wide. So it's imperative to test to the control about 1x a month on all devices. The Dexcom (continuous glucose monitor) that Katie wears like an insulin pod (a 2nd pod) tests her blood every 5 min but she can calibrate it whenever needed and it MUST be calibrated every 12 hours. It beeps and is annoying until she does.
Anyway the pdm was tested and it was reading LOW this whole time and when the pump reads low -you guessed it- it stops pumping insulin into her system. But she was really high and getting dangerously so! There was NO way to reset the pump to read properly and so we knew we'd have to swap it out. Stupidly the OmniPod does not allow you to adjust your Blood glucose levels..but that would be a great option to have..even if it's something built in but locked and only can be done when you call in or something. I get why it's a safeguard but she basically had to go back to injections and they replaced the OmniPod..they overnighted it to her no problem.
The Dexcom people were more obnoxious. Right after we got home from Elkhorn her Dexcom was reading way off (usually happens towards the tail end of a week- I don't understand how people get up to 12 days off one sensor..it's so far off the actual numbers it's useless usually by day 6). And then just refused to boot up. She called them and they wanted her to reset it (which she had already tried) while she was at work. She was crabby so I called the guy back after she waited over an hour for a reboot that never happened. And the guy starts telling me if there is water damage they won't cover the replacement and will charge me. I told him he could try but that I would just return the device then. First- it doesn't have water damage. 2nd...it should be sturdy and be waterproof...3rd he was trying to tell me that the port door breaking off damaged the inside and caused it to not work. HA. and so on. But we finally got it replaced too and so far- no bill......
Understand- the Omnipod pump has it's own built in blood glucose monitor. So she's able to put a test strip into the pdm and then test her blood and bolus (give instant insulin via a pump pod she wears) or adjust her basal (continuous stream of insulin through the same pod) as needed. So her pdm was telling us low. I asked her where the control fluid was. Omnipod also provides a separate blood glucose monitor because let's face it..if what happened -happens to Katie's monitor you need to have backup. Not to mention that just because she has this pump means nothing less for carrying items. She still carries needles now in addition to her humalog so she can instantly inject insulin if needed.
So she couldn't find her control fluid..didn't know if she had it. Didn't have her spare glucose monitor (Really?! I asked only 20 times if she had everything she needed..I think I'll give her a note with everything listed next time!) And we are in the country on a farm. I could have driven into town and BOUGHT a new monitor but that was annoying me. So even though she was annoyed (high blood sugar which we didn't know at this point) at having to dump her purse..I made her do it and lo and behold there is a control bottle.
The control fluid is red and is dropped onto a strip and then you can make sure your meter is reading correctly. Based on my limited research the meters are allowed by the FDA? to have a certain % of error..not really cool and the range is wide. So it's imperative to test to the control about 1x a month on all devices. The Dexcom (continuous glucose monitor) that Katie wears like an insulin pod (a 2nd pod) tests her blood every 5 min but she can calibrate it whenever needed and it MUST be calibrated every 12 hours. It beeps and is annoying until she does.
Anyway the pdm was tested and it was reading LOW this whole time and when the pump reads low -you guessed it- it stops pumping insulin into her system. But she was really high and getting dangerously so! There was NO way to reset the pump to read properly and so we knew we'd have to swap it out. Stupidly the OmniPod does not allow you to adjust your Blood glucose levels..but that would be a great option to have..even if it's something built in but locked and only can be done when you call in or something. I get why it's a safeguard but she basically had to go back to injections and they replaced the OmniPod..they overnighted it to her no problem.
The Dexcom people were more obnoxious. Right after we got home from Elkhorn her Dexcom was reading way off (usually happens towards the tail end of a week- I don't understand how people get up to 12 days off one sensor..it's so far off the actual numbers it's useless usually by day 6). And then just refused to boot up. She called them and they wanted her to reset it (which she had already tried) while she was at work. She was crabby so I called the guy back after she waited over an hour for a reboot that never happened. And the guy starts telling me if there is water damage they won't cover the replacement and will charge me. I told him he could try but that I would just return the device then. First- it doesn't have water damage. 2nd...it should be sturdy and be waterproof...3rd he was trying to tell me that the port door breaking off damaged the inside and caused it to not work. HA. and so on. But we finally got it replaced too and so far- no bill......
Xmas Photo Shoot 2013
Mike is always so serious. Sigh. I just take what I can and hope we get a good image of him. I think he is so like his dad..get this over with...he tolerates the picture and would wear whatever was on his body. Such a boy! He's a sophomore this year and 15 now. Amazing to think he has his permit and can get his license in June next year!
Kev is always lurking around trying to get the kids to laugh. I think he succeeded a bit too much :)
She was not feeling 100% here but she tried for me. This disease causes her weight to go from extreme to gaining some (still thin as hell though ya know?) but she thought she lost all that weight before from dieting and exercise. Poor kid....I'm like..nah this is healthier and she's glad to have her curves back but this day was an outfit she wasn't wanting to wear and all her other clothes were either falling off her or too small (we went shopping to get some things that did fit and a new photo shoot has to happen soon!)
10.16.2013
Best Device -hands down!
I cannot say enough about the VTech Baby monitor. While we are not using it for its intended purpose it has saved Katie's butt and mine quite a few times.
This is the same thing that Zurg (Lynda) suggested to me months ago. With the flood in the basement and the fact that Katie lived up on the top floor of our house...we hadn't needed to buy this for a long time. But we *finally* finished her bedroom about 2-3 weeks ago...and I finally got around to buying a monitor. Katie was going to just get one at the store on her way home one day and for some reason I was like..nah let me look into it. This monitor ROCKS. It has levels of volume and I can even adjust the sensitivity but it honest does NOT pick up anything other than her calling out to me. I don't hear snoring (the dog's) or much else. I do hear her tv if it's up loud but that isn't on all night. What this monitor has done has allowed her to be in the basement and away from us and enables us to hear her if she needs help. There is no way she could ever yell loud enough for me to hear her two floors away. Just not gonna happen. She got very ill one night vomiting and couldn't get up to get her Dexcom to check her numbers and I could hear her faintly calling to me. I was able to press a button to talk back to her and get up to check on her. INVALUABLE. Also..for some reason (because she's a teenager? ) she does NOT hear her Dexcom when the alarm is going off. I mean not at all. So she puts the receiver by the monitor and I hear it no problem. I don't have to get up and check it (when she was up near us in the room next door I never heard the damn thing but I can with the monitor). And I can just press that talk button to talk to her. Brilliant idea and I so appreciate this device! And there is no static..it is so not your baby monitor from when our kids were babies!!!!
Finally I'll try and leave you with a photo of Katie's room all done. The black paint is actually chalkboard paint and she chose all the colors and bedding herself. So much fun to put together for her!
10.14.2013
The JDRF Walk in photos
Thank goodness for my brother Tom...he was able to take a bunch of pics while we were being herded like cattle through the path on the walk and snap some cute ones. Enjoy all!
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| Katie and her best friend Mel and sister Brianna |
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| Katie with friends and sister AnnaGrace |
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| Uncle David, Mike and friends |
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| Me and my girl! |
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| Cousin Sue |
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| Cousins Sue and Art |
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| Uncles Tom and Dave |
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| Uncle Jim, Aunt Ruth and the Uncles |
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| Toni and Haze!!! |
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| Pat and Nana- important volunteers and team mates! |
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| During the walk- the gang |
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| Katie with her Uncle Tommy- TommyTuesday |
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| Herding cattle I tell ya! |
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| JDRF Walk to Cure Diabetes |
We are alive..I swear
I guess my family does follow me here! I'm so sorry. My 8 week masters course is winding down and while I still have fieldwork/processing next week and another masters course- I can finally *almost* breathe!!!
We did the walk on a stunning day two weeks ago now. It was just a bit cool out and so lovely. We enjoyed the walk a lot..but we mainly enjoyed our family and friends and coming together to show Katie we support her in this struggle and love her. Next year we might just move our group to a fall bbq at our house and do a Katie day. Our goal was $5,000 but since I thought $1,000 would be major- raising almost $1800 was great! I think they might not have added in any of our on-site donations yet but do not quote me on that.
To anyone who donated or walked- we would like to sincerely thank you. It's a big deal to the JDRF for their research and to us.
So an update- Katie is doing pretty good. She got approved after that lovely appeal for a pump..just in time for her to be eligible for her insurance from Starbucks. :) Figures right? She's got a great insurance and can work as little as 20 hours per week or 240 a quarter in order to keep it. It's going to pay a lot more than our Humana and we might eventually drop it when we switch over to the marketplace/Obamacare stuff. We are truly grateful for Obamacare....when we had to pick up private insurance (because Kev is a contractor) we were denied coverage for me from a "prior" condition (aka...I was using advair after swine flue and they decided I had asthma). So I got ICHIP which is essentially a discount plan when *I* personally hit $5,000 deductible. Hahahaha. Now on the marketplace I'm being offered something like 40 choices for healthcare..astounding.
Back to Katie- she's got the pump...she is having more lows than highs...but she's doing ok. The dexcom hurts a ton..she's not a fan of it..but I like not having to nag her about numbers all day and it helps us to know how she is doing so I am not standing over her at night seeing if she is breathing. She goes in for wisdom teeth removal this week- not looking forward to it. She's in a lot of pain and because she's not "controlled" they will not put her under. So we will see how she tolerates it. Hoping it stops the last of her pain and she can work on feeling 100% again.
Her next appt we get the A1c test done again. I can only assume it has got to be better than 12.1%. I mean really..since they want you at was it 5-6%? I'll have to update here when we get it.
The fridge broke a few weeks ago...got a scratch and dent one for almost 30% of the price maybe a bit more? It works nice..but what a sticker shock. I should not have stressed so much about it because then a week later the car needed brakes on all wheels and also bearings replaced. Sometimes the amount of money flying out for issues makes me lose my breath.
I think we *finally* maxed out the deductible for Kev and the kids. Please I hope so. Wish it could be applied to previous bills we owe on...but honestly we go through everyday so happy that we are alive and together....I'm just so dang grateful that Kev is ok and we are so close and in love and that Katie only has Type 1 diabetes. Things could always be worse.
Ok that's enough for now.....I'll keep you updated as we move along here in this new world....I'll post more pics from the walk soon!
Fee
We did the walk on a stunning day two weeks ago now. It was just a bit cool out and so lovely. We enjoyed the walk a lot..but we mainly enjoyed our family and friends and coming together to show Katie we support her in this struggle and love her. Next year we might just move our group to a fall bbq at our house and do a Katie day. Our goal was $5,000 but since I thought $1,000 would be major- raising almost $1800 was great! I think they might not have added in any of our on-site donations yet but do not quote me on that.
To anyone who donated or walked- we would like to sincerely thank you. It's a big deal to the JDRF for their research and to us.
So an update- Katie is doing pretty good. She got approved after that lovely appeal for a pump..just in time for her to be eligible for her insurance from Starbucks. :) Figures right? She's got a great insurance and can work as little as 20 hours per week or 240 a quarter in order to keep it. It's going to pay a lot more than our Humana and we might eventually drop it when we switch over to the marketplace/Obamacare stuff. We are truly grateful for Obamacare....when we had to pick up private insurance (because Kev is a contractor) we were denied coverage for me from a "prior" condition (aka...I was using advair after swine flue and they decided I had asthma). So I got ICHIP which is essentially a discount plan when *I* personally hit $5,000 deductible. Hahahaha. Now on the marketplace I'm being offered something like 40 choices for healthcare..astounding.
Back to Katie- she's got the pump...she is having more lows than highs...but she's doing ok. The dexcom hurts a ton..she's not a fan of it..but I like not having to nag her about numbers all day and it helps us to know how she is doing so I am not standing over her at night seeing if she is breathing. She goes in for wisdom teeth removal this week- not looking forward to it. She's in a lot of pain and because she's not "controlled" they will not put her under. So we will see how she tolerates it. Hoping it stops the last of her pain and she can work on feeling 100% again.
Her next appt we get the A1c test done again. I can only assume it has got to be better than 12.1%. I mean really..since they want you at was it 5-6%? I'll have to update here when we get it.
The fridge broke a few weeks ago...got a scratch and dent one for almost 30% of the price maybe a bit more? It works nice..but what a sticker shock. I should not have stressed so much about it because then a week later the car needed brakes on all wheels and also bearings replaced. Sometimes the amount of money flying out for issues makes me lose my breath.
I think we *finally* maxed out the deductible for Kev and the kids. Please I hope so. Wish it could be applied to previous bills we owe on...but honestly we go through everyday so happy that we are alive and together....I'm just so dang grateful that Kev is ok and we are so close and in love and that Katie only has Type 1 diabetes. Things could always be worse.
Ok that's enough for now.....I'll keep you updated as we move along here in this new world....I'll post more pics from the walk soon!
Fee
10.13.2013
Mike's Homecoming
I may redo our group photo shoot for the xmas cards this year..haven't really decided yet. The girls love to dress up and take pics..but Mike is a man of let's get this over with (like his dad!) (I'll post the group pics separately!)
Anyway enjoy!
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| Mike and his "date" This photo cracks me up because his flower didn't have a pin so he was trying to hold it up with his arm. LOL |
I believe after this photo he asked if I was done yet!
10.11.2013
504 and school- secondary education
Forgot I had started this post. Just a quick update to Katie and her college. We had the HARDEST time with getting her an appointment to get accommodations in place!!! They literally acted like she was trying to get out of a test or work. I had to go to every appointment and the gatekeeper/secretary who was the worst HAD type 1 diabetes. Sigh. I love having to go in with documentation from the nurse and printouts from the American Diabetes Association to explain myself.
But we did and she now has some things in place to help her. Heaven have mercy when she gets to her next college. I suspect this will be a lifelong battle...
Things we asked for:
Ability to get a snack if her numbers drop low or to get water if they go high (and there are professors who will not want you to leave class!)
Ability to get a snack if her numbers drop low or to get water if they go high (and there are professors who will not want you to leave class!)
Ability to have her dexcom and pump on her (again some ppl would assume she's trying to cheat on a test, etc)
Breaks on a test if needed to adjust insulin, etc.
Not asking for the moon here people!!
9.15.2013
My poor neglected blog!
I know it's been neglected because my family tells me. Katie is still waiting on a ruling from Humana on her pump. We are not thinking that they will approve her but we aren't sure. No more news other than Kev's scans came back clear. So at least one thing is good.
JDRF walk is happening soon (October 6th) so please consider joining us and once my one class ends I will have more time to update. Plus we see the endo in a week to see how she is doing.
JDRF walk is happening soon (October 6th) so please consider joining us and once my one class ends I will have more time to update. Plus we see the endo in a week to see how she is doing.
8.16.2013
Appeal
Well we are being forced to appeal. Our insurance declined Katie for the pump. Which was fine....but she's been on the insulin injections now for almost two months and in that time she has not stabilized even a little. Granted I don't mean stabilize like how most people think. I expect there to be some highs and lows...but what I don't expect with her blood sugar is for Katie to go from the 200s and rising fast to then falling fast to the 100s and lower. It's wreaking havoc on her system and making her too sick to want to do anything. This is an active woman. She's always on the go. It makes me so sad to see her SO sick and not wanting to dress up, wear makeup, go out with friends or do anything. And it's not depression- it's simply the damn numbers. She's sick of the first thing her family asks - "What does the dexcom say" or "what are your numbers?" And I don't blame her at all!
Needless to say- after seeing the endo in the last few weeks....they've changed her insulin again. The lantus was doing the job but it was causing her bleeding and burns and they switched her to Levemir. Some idea but not as flat or long lasting as Lantus. Which works better (aka no burning or bleeding) BUT doesn't control the blood sugars as well. In addition to this- her Humalog was changed from the kwik pen to cartridges. This was to help her do smaller increments of insulin. They adjusted her insulin to carb ratio too. (More on calculating that in another post!). All of this wordiness to say that I basically wrote with Tenney's help (Thanks Tenney! You are a DOLL!). I used a few sample letters I found online but entered in a bunch of information on my own. Referenced the American Endocrinologist's Association and their recommendations. Then if that wasn't enough I decided to look up some journals and directed them to actual tables and data that I read. I am hoping all this plus the Dexcom data is enough to convince them that Multiple Daily Injections (MDI) therapy is not the answer for Katie and insulin therapy is.
I want a world where an artificial pancreas is available and there is a cure for Type 1 Diabetes. An artificial pancreas is the insulin pump and CGM all rolled into one and it talks to your phone on an app. In addition to this..it is able to calculate how much insulin automatically that your body needs based on the concentration of sugar in your blood. That's a pretty awesome device. It's in trials now and I hope it gets through quickly. I really do!
Keep us in your thoughts. I'll update here when I can. I'm about to be in the field next week so won't be posting as much and classes start again for me in two weeks on Monday.
I'll post our appeal letter here after all is said and done for those that might want a template to use. Right now I don't want to do anything to hurt her process. In six months we can get it and for free but to see your child so sick from highs and lows- you are willing to do anything for her. Fingers crossed! (Toes too!)
Needless to say- after seeing the endo in the last few weeks....they've changed her insulin again. The lantus was doing the job but it was causing her bleeding and burns and they switched her to Levemir. Some idea but not as flat or long lasting as Lantus. Which works better (aka no burning or bleeding) BUT doesn't control the blood sugars as well. In addition to this- her Humalog was changed from the kwik pen to cartridges. This was to help her do smaller increments of insulin. They adjusted her insulin to carb ratio too. (More on calculating that in another post!). All of this wordiness to say that I basically wrote with Tenney's help (Thanks Tenney! You are a DOLL!). I used a few sample letters I found online but entered in a bunch of information on my own. Referenced the American Endocrinologist's Association and their recommendations. Then if that wasn't enough I decided to look up some journals and directed them to actual tables and data that I read. I am hoping all this plus the Dexcom data is enough to convince them that Multiple Daily Injections (MDI) therapy is not the answer for Katie and insulin therapy is.
I want a world where an artificial pancreas is available and there is a cure for Type 1 Diabetes. An artificial pancreas is the insulin pump and CGM all rolled into one and it talks to your phone on an app. In addition to this..it is able to calculate how much insulin automatically that your body needs based on the concentration of sugar in your blood. That's a pretty awesome device. It's in trials now and I hope it gets through quickly. I really do!
Keep us in your thoughts. I'll update here when I can. I'm about to be in the field next week so won't be posting as much and classes start again for me in two weeks on Monday.
I'll post our appeal letter here after all is said and done for those that might want a template to use. Right now I don't want to do anything to hurt her process. In six months we can get it and for free but to see your child so sick from highs and lows- you are willing to do anything for her. Fingers crossed! (Toes too!)
8.10.2013
Travel and Diabetes
We discovered that while Katie *can* take part in all the eating out - going out of town entails...she probably shouldn't. She's been running high ALL weekend. We had gone up to MI to see Kev and spend some quality time together as a family. She wasn't working so was less active but the meals we did eat out- Quaker Steak and Lube (burgers and fries and pretzels) and El Barrio (awesome, awesome mexican food in Grand Rapids!) and then Pizza at Pepperino's in downtown Grand Rapids, caused her blood sugars to raise up to over 300.
She was SO high she had trace amounts of ketones in her urine. Yes I had to test...glad I knew how after animal phys class (We did this in lab one time). I had her drink lots of water as when we first started- the color was a dark yellow. By about two hours later it was more clear and the ketones were almost gone. But she was almost as fuzzy as she is when she's low. Thank goodness for my friend Mary. Her son has diabetes and she has been such a huge help. I can't even explain y'all how much it means to know that I have someone I can text to get answers. We ended up giving her 1 extra unit of insulin after her blood sugar kept rising at 370. We gave it with protein and that finally got her to start coming down. So scary when it was happening. She couldn't even think clearly at all. We were told that diabetics are frequently arrested for appearing drunk or high. I believe it. Her lows and highs are like this. It's probably why her so-called friends in HS believed the worst about her rather than tell us she was sleeping through classes, weaving and looking crazy. She might have been diagnosed sooner if people had.
Our endo uses mychart which is AWESOME- because we can email them anytime and they will get back to us. Plus we can page the doctor. I just hate doing it when it seems so easy to figure things out. But we always tell them what we tried.
When you travel- take triple the amount of everything. It's worse than a baby traveling. My one suitcase travel packing was tossed out the window. We had to bring:
-extra dexcom insertion needle (in case we needed to do a site change)
-waterproof tape
-extra needles, test strips, lancets, insulin- cooler and ice for the unopened insulin
-extra snacks. Glucose tablets for low blood sugar, hard candies, icing (great for lows), ketone strips, sharps container, carb guide, instructions for ketone strips, doctor numbers glucagon.
-food for the room for snacks including protein, fruit and veggies
and so on. It was like bringing an extra suitcase...traveling light is a thing of the past.
I sure hope she starts to level off soon. Keep her in your thoughts and prayers.
She was SO high she had trace amounts of ketones in her urine. Yes I had to test...glad I knew how after animal phys class (We did this in lab one time). I had her drink lots of water as when we first started- the color was a dark yellow. By about two hours later it was more clear and the ketones were almost gone. But she was almost as fuzzy as she is when she's low. Thank goodness for my friend Mary. Her son has diabetes and she has been such a huge help. I can't even explain y'all how much it means to know that I have someone I can text to get answers. We ended up giving her 1 extra unit of insulin after her blood sugar kept rising at 370. We gave it with protein and that finally got her to start coming down. So scary when it was happening. She couldn't even think clearly at all. We were told that diabetics are frequently arrested for appearing drunk or high. I believe it. Her lows and highs are like this. It's probably why her so-called friends in HS believed the worst about her rather than tell us she was sleeping through classes, weaving and looking crazy. She might have been diagnosed sooner if people had.
Our endo uses mychart which is AWESOME- because we can email them anytime and they will get back to us. Plus we can page the doctor. I just hate doing it when it seems so easy to figure things out. But we always tell them what we tried.
When you travel- take triple the amount of everything. It's worse than a baby traveling. My one suitcase travel packing was tossed out the window. We had to bring:
-extra dexcom insertion needle (in case we needed to do a site change)
-waterproof tape
-extra needles, test strips, lancets, insulin- cooler and ice for the unopened insulin
-extra snacks. Glucose tablets for low blood sugar, hard candies, icing (great for lows), ketone strips, sharps container, carb guide, instructions for ketone strips, doctor numbers glucagon.
-food for the room for snacks including protein, fruit and veggies
and so on. It was like bringing an extra suitcase...traveling light is a thing of the past.
I sure hope she starts to level off soon. Keep her in your thoughts and prayers.
8.08.2013
We are almost at $600!!!!
It's hard to believe but we are almost at $600 in our efforts to raise money for the JDRF. We can't wait for the walk and are so excited that people are wanting to donate to our cause! It's not too late to join in- either to walk and raise your own money or to donate to our walk!!!!! Katie and I get to go to a captain's lunch in a week and I know she is excited to learn all she can. We also get to hear about the latest research on Type 1 Diabetes. Katie still has a goal of raising $5000 so please- if you haven't donated- every little bit helps. We are going to be designing tee shirts for our team to wear...we have some more work to do on that. And we can't wait for the walk. It's going to be October 6th on the Lakefront here. Should be beautiful out. There are other ways to donate also. You can host a party- we just did one for South Hill Designs and Thirty-One and my friend Sandy donated her commission and our rewards and we raised $210 from one little party. If you would want to host any type of party (Pampered Chef, Tupperware, etc and so on) we can raise even more. Thanks!!!
8.06.2013
Insulin Change
Katie has been having super bad swings. This is *very* hard on her body...I would assume it would be hard on anyone....but I can only attest to what I've seen with Kate. She's been working about 30-32 hours a week and I think she's been a bit annoyed that the numbers haven't leveled off.
I suspect that it will always be a bit like this....especially with any physiological changes (illness, monthly stuff, etc and so on). Any little change can wreak swings in her blood sugars. What's the hardest isn't being at 70 or 200 or even 300. It's the swinging within an hour from one to the other. Her cells aren't ever working at 100% and she's getting exhausted.
Luckily we have a great endo and office- we had an appointment to see Dr. Kassar anyway- and so we talked it over with him. We made the switch from Humalog 75/25 to Humalog and Lantus. More on them below:
Humalog 75/25 is a great starting point. Humalog 75/25 is a man-made insulin that combines both intermediate acting insulin with fast-acting insulin. It's great for a few reasons- because it only requires you to stick yourself with a needle two times a day. And because it could be good if your body responds well to it.
For my bio/geek friends:
(From RxList:)
Humalog: This insulin is similar to the 75/25 but it's only a rapid-acting human insulin analog. (Insulin Analog is simply an altered form of insulin that is different from what happens in nature but works like human insulin. The amino acid sequence is genetically modified (engineered) to change its adsorption, distribution, metabolism and excretion characteristics. This alone would not help Katie. Which is why she now also takes Lantus.
Lantus: It's a long-acting basal insulin analogue. The insulin is inside microcrystals so the insulin is slow acting. Katie takes this at night so she can have it work over a long period of time(18+ hours). Unlike Humalog- this insulin does not peak. It's the best long acting insulin on the market according to our doctor. It's not cheap..but then none of the insulin out there is.
Dangers of High Blood Sugar: Blindness, loss of limbs, kidney failure and nerve problems to name a few- these appear OVER time. And might not appear until much later in life.
Dangers of Low Blood Sugar (under 70 mg/dl): Seizures, unconsciousness, accidents (while driving, walking or falling) The danger of something happening to you because of the low blood sugars is low..but things that CAN happen while you are confused and lethargic and have low blood sugar are scary. Repeated seizures can cause brain damage, you can get in a car accident while you have a low (we've already had a major accident that we suspect was a result of the undiagnosed diabetes - and it WAS scary- they could have been killed!)
It's important to control Katie's blood sugar and work on the lows first since these cause danger to her body now. But that doesn't mean you ignore the highs. You can't because eventually if you ignore your diabetes it will come back to bite you when you are much older. So right now Katie is taking Humalog before every meal. She has to calculate a correction factor and other data in order to get the right amount of insulin. Then at night she injects the Lantus. She has gone from two sticks a day to four. And I suspect more will occur before we get this figured out. We really, really hope that six months passes quickly so we can get that OmniPod insulin pump and that Humana doesn't give us anymore issues about it. We are still researching fighting and having an external review of the pump for Katie. But right now all of our time and energy is going into making sure her numbers get to be in a tighter range. Especially before school starts!
I suspect that it will always be a bit like this....especially with any physiological changes (illness, monthly stuff, etc and so on). Any little change can wreak swings in her blood sugars. What's the hardest isn't being at 70 or 200 or even 300. It's the swinging within an hour from one to the other. Her cells aren't ever working at 100% and she's getting exhausted.
Luckily we have a great endo and office- we had an appointment to see Dr. Kassar anyway- and so we talked it over with him. We made the switch from Humalog 75/25 to Humalog and Lantus. More on them below:
Humalog 75/25 is a great starting point. Humalog 75/25 is a man-made insulin that combines both intermediate acting insulin with fast-acting insulin. It's great for a few reasons- because it only requires you to stick yourself with a needle two times a day. And because it could be good if your body responds well to it.
For my bio/geek friends:
(From RxList:)
Chemically, insulin lispro is Lys(B28), Pro(B29) human insulin analog, created when the amino acids at positions 28 and 29 on the insulin B-chain are reversed. Insulin lispro is synthesized in a special non-pathogenic laboratory strain of Escherichia coli bacteria that has been genetically altered to produce insulin lispro. Insulin lispro protamine suspension (NPL component) is a suspension of crystals produced from combining insulin lispro and protamine sulfate under appropriate conditions for crystal formation.
Insulin lispro has the following primary structure: Insulin lispro has the empirical formula C257H383N65O77S6 and a molecular weight of 5808, both identical to that of human insulin.
![Humalog® Mix75/25™ [insulin lispro protamine] Structural Formula Illustration](https://lh3.googleusercontent.com/blogger_img_proxy/AEn0k_v5xd2E787pVvk5lO2k-H82RRg9UJkdIeE6fzfwKNhYq6go6xmqHsI3WlENxA8Qs1pWxbBsJ9JD19lGTXPkYOJptKH5eexsQN2PBE4ZQvIJoxRoFsI_DbQ3qg=s0-d) |
Humalog: This insulin is similar to the 75/25 but it's only a rapid-acting human insulin analog. (Insulin Analog is simply an altered form of insulin that is different from what happens in nature but works like human insulin. The amino acid sequence is genetically modified (engineered) to change its adsorption, distribution, metabolism and excretion characteristics. This alone would not help Katie. Which is why she now also takes Lantus.
Lantus: It's a long-acting basal insulin analogue. The insulin is inside microcrystals so the insulin is slow acting. Katie takes this at night so she can have it work over a long period of time(18+ hours). Unlike Humalog- this insulin does not peak. It's the best long acting insulin on the market according to our doctor. It's not cheap..but then none of the insulin out there is.
Dangers of High Blood Sugar: Blindness, loss of limbs, kidney failure and nerve problems to name a few- these appear OVER time. And might not appear until much later in life.
Dangers of Low Blood Sugar (under 70 mg/dl): Seizures, unconsciousness, accidents (while driving, walking or falling) The danger of something happening to you because of the low blood sugars is low..but things that CAN happen while you are confused and lethargic and have low blood sugar are scary. Repeated seizures can cause brain damage, you can get in a car accident while you have a low (we've already had a major accident that we suspect was a result of the undiagnosed diabetes - and it WAS scary- they could have been killed!)
It's important to control Katie's blood sugar and work on the lows first since these cause danger to her body now. But that doesn't mean you ignore the highs. You can't because eventually if you ignore your diabetes it will come back to bite you when you are much older. So right now Katie is taking Humalog before every meal. She has to calculate a correction factor and other data in order to get the right amount of insulin. Then at night she injects the Lantus. She has gone from two sticks a day to four. And I suspect more will occur before we get this figured out. We really, really hope that six months passes quickly so we can get that OmniPod insulin pump and that Humana doesn't give us anymore issues about it. We are still researching fighting and having an external review of the pump for Katie. But right now all of our time and energy is going into making sure her numbers get to be in a tighter range. Especially before school starts!
7.27.2013
Dietician
We are doing our last meeting with the dietician today. It's been *very* helpful for us to learn all the ins and outs of this disease. We've learned about counting carbs and good meal choices but most importantly as a parent- it's enabled me to not have to be the HEAVY on everything.
Katie still eats sugar. Please don't think she doesn't. She gets cravings like any other kid out there. We just ask her to limit that sugar and to make choices about carbs by choosing good carbs. She knows how she feels when she eats candy or has ice cream. But I don't see her giving it up forever. So now when she has a Blizzard from DQ it's a small one and only when her numbers are running lower. She has to drink water to bring her sugars down. Exercise also is excellent for it.
Which is excellent because I need to exercise anyway. Fruits and veggies are better choices. Fruits are a better choice for carbs than ice cream or sugar. But she also needs to avoid the sugar-free options that are great for type 2 diabetics if that is their choice. Katie has a mom and dad who are educated in science. I have a BS in Biology and a minor in Chemistry. I'm getting my masters in Environmental Biology. Needless to say I have opinions on aspartame and other poisons out there. But this is our personal choice. Plus sugar-free foods we found out have a lot of fat and other additives in them added in to make them more palatable.
We try and live more on fresh foods and eat that way. We aren't perfect- no one is. But these classes have given us a way to learn about what we need to do to keep Katie's organs as healthy as possible. And she's handling it like a pro.
She wants to be a doctor or a personal trainer and she's all about health. I see her easily getting her degrees and then going on to help find a cure for Type 1 diabetes. She's going to be passionate about it because she's living it. Go get 'em honey- we are behind you 100% all the way! So, so proud of our girl!
Katie still eats sugar. Please don't think she doesn't. She gets cravings like any other kid out there. We just ask her to limit that sugar and to make choices about carbs by choosing good carbs. She knows how she feels when she eats candy or has ice cream. But I don't see her giving it up forever. So now when she has a Blizzard from DQ it's a small one and only when her numbers are running lower. She has to drink water to bring her sugars down. Exercise also is excellent for it.
Which is excellent because I need to exercise anyway. Fruits and veggies are better choices. Fruits are a better choice for carbs than ice cream or sugar. But she also needs to avoid the sugar-free options that are great for type 2 diabetics if that is their choice. Katie has a mom and dad who are educated in science. I have a BS in Biology and a minor in Chemistry. I'm getting my masters in Environmental Biology. Needless to say I have opinions on aspartame and other poisons out there. But this is our personal choice. Plus sugar-free foods we found out have a lot of fat and other additives in them added in to make them more palatable.
We try and live more on fresh foods and eat that way. We aren't perfect- no one is. But these classes have given us a way to learn about what we need to do to keep Katie's organs as healthy as possible. And she's handling it like a pro.
She wants to be a doctor or a personal trainer and she's all about health. I see her easily getting her degrees and then going on to help find a cure for Type 1 diabetes. She's going to be passionate about it because she's living it. Go get 'em honey- we are behind you 100% all the way! So, so proud of our girl!
7.26.2013
How low can you go?
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| Katie's Accu-Chek Nano Glucometer |
I had let her sit in the front of the jetta. Kev was driving. She was saying we should get her lunch on the way home..although now that I think back, I think *I* had said that. So she was testing her blood in anticipation for eating. We were looking for fast food that wasn't surrounded by construction because she was already a little late for work at Starbucks.
I *should* have known she was low when she growled at me about calling SB to let them know she'd be late. When she tested her blood..she gasped and I said..what were the numbers? She couldn't even TALK guys. She was literally shaking by this point and showed me the meter and then it fell out of her fingers. I saw 55 in a blur and started yelling to Kev to pull over ANYwhere that had food.
He is a man. My love, my soulmate but he cannot change directions on a dime. He just can't. Some of it could be the hydrocephalus too...so he's in a fog trying to figure out WHERE and I'm like..there is a Dunkin' Donuts up ahead- pull in there...he's saying where...I'm getting annoyed...katie has dropped her whole bag now...there went the damn glucagon (I can assure you there is NO training on what to do when the glucagon is under your semi-conscious kid's seat in a moving vehicle).
I tell him to turn and it was the WRONG turn..I almost jumped out of the car to run to the DD which was right next door but not accessible but didn't. I get him to get in the right spot as Katie starts moaning..and we park and I jump out. I look back and he's joining me trying to lock the car and is like..Katie get out of the car. I run back and I don't think I was very polite as I suggest he stay with her and find the damn stuff she dropped.
I can tell you two things...a) he stayed and gathered it all and b) that lady at the DD thinks I have QUITE the addiction to caffeine. I got her an iced mocha something....a muffin, some munchkins and I don't know what all else. I think I spent $20 trying to get enough carbs in my hands. Who has time to read the nutrition when their kid is so low she could slip into that coma? It was almost comical when I returned and Kev got the puppy dog eyes and looked at me and asked what I got HIM.
There are days I am not sure I am going to survive Katie's Type 1 Diabetes and Kev's hydrocephalus and that G-d must have *quite* the sense of humor over this. Her blood sugar literally did not raise enough for her to work or drive herself. So I dropped Kev off..got her fast food (horrid but fast). And had to drive her to work. I stayed for her to calibrate the Dexcom (once you do an insertion- it takes I think 12 hours for it to start working so it wouldn't have beeped if she was 55- thank GOODNESS we were testing before her noon meal and it was low then!) My whole day was devoted to her diabetes again. I'm not getting much accomplished at home other than clean up, make her meals and then go to appointments. I'm so glad we are getting her stabilized (as much as we can) now because fall will be brutal- I'm in classes three days a week and she's in school 3-4 days.
I know I have a ton of gray hair from that experience. We had glucose tablets, icing, snacks, etc. But when it's dropped under a seat you are in a super scary predicament. Usually (the lowest she's ever been is 59) you have time to get her carbs into her (15 g) and get her blood sugars up. When it's at 55...not so much. At any point she can go into a seizure and not be able to swallow..if she can't swallow it's glucagon time.
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| Glucagon injection kit- with us always! |
I want a Diabetes boot camp for parents. They can put me through scenarios so I can be prepared. Ha.
7.25.2013
Dexcom G4 Platinum has landed at our house!
Katie has a new tool which is going to be super helpful in managing her diabetes! These little devices are NOT cheap. Our insurance discounted it down to $1600 roughly and $300 a month for supplies. After we meet our deductible it will be covered 100% though (that is what we are waiting for!)
A continuous glucose monitor (Or CGM) is what Katie is now wearing. It inserts via a catheter-type needle and stays on her body for 7 days. Before we got this CGM we were testing her blood via a traditional glucose monitor about 12 times a day or more. I don't think people realize- but diabetics must test their blood before every meal and bedtime. In addition to this, because Katie drives she has to test it before she gets in the car also. Then she needs to test when her numbers seem low or high. We go through strips (at a $1 a strip) like they are water. A CGM will enable us to only have to calibrate it every 12 hours and then test the normal 4 times a day. It's important to note that this will show us trends...but that the device is giving us blood sugar levels from her interstitial tissue- NOT her actual blood. So it has about a 15-20 min delay. But it can tell us when she's rapidly increasing, decreasing or hitting lows. She can then test with a traditional meter and compare levels.
The important thing for Katie is that this device will beep at her incessantly when she's sleeping until she wakes up when she's low or high and deals with it. This is key for someone who does not recognize her low blood sugar. She's had a few episodes at work before this CGM where she didn't recognize she was getting low and thank goodness her fellow employees did and got her to sit down and get some carbs into her system.
This device allows her to live more normally. It checks her blood levels for her every five minutes.
I will say that the set up is clunky. I can only imagine it will be smaller and easier to insert with every new release. She has to put this sensor on and it has a sticky pad that sticks to her stomach and then at first it's got this plastic tube on it. That tube houses the needle. She needs to push it into her stomach and the needle then stays in place. The sensor is waterproof and she wears it for 7 days before she makes a change. The receiver itself is good for about a year before you have to replace it and is NOT waterproof but she can keep that nearby. She currently wears it like a pager almost. I hope future versions will eventually link it to a cell phone so you don't have to have that big pager thing with you.
When she gets a pump she will have two devices she will need to carry. I'm so grateful that Humana approved this CGM. I finally got a good night's sleep knowing that it would beep at us if she had a severe low. We will post more information as we learn more. Right now we are working on getting the software on my laptop and then the receiver will download data for us that we can see trends on. She can enter carbs and insulin units also and the device will calculate what is going on and when. So priceless..
This is a way for her to check her blood sugar and make corrections while on the go. She can check when we exercise, she's out running errands, at work, etc. Priceless!!!
7.24.2013
Fundraising for Katie's Warriors!
My good friend Sandy sells South Hill Designs and Thirty-One bags. We were so honored that she offered to do a party for us for Katie's Warriors and donated her commission to our JDRF (Juvenile Diabetes Research Foundation) Walk to Cure Diabetes (this coming October!) Please click on the link to find our page- we are Katie's Warriors and we are walking at the Chicago Lakefront on 10/6/13.
Anyway there is still time to order these awesome necklaces and tote bags. I'll include the links here. 100% of the commission from this party will be donated.
Shop South Hill Designs at www.southhilldesigns.com/
Shop Thirty-One Gifts at http://
Anyway there is still time to order these awesome necklaces and tote bags. I'll include the links here. 100% of the commission from this party will be donated.
Shop South Hill Designs at www.southhilldesigns.com/
Shop Thirty-One Gifts at http://
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| AnnaGrace's Locket |
These lockets are so cute and I love that we can personalize them for what we love. Mine has a blessed coin and then birthstones for my gang plus a camera (for my love of photography) and an owl (for my biology interests). I am waiting on my blue ribbon (for diabetes awareness) and my rainbow (private joke between my husband and myself :) AnnaGrace chose a horse, paint palette and guitar with Dream. Katie chose a starbucks coffee cup (Barista - holla!) and a blue diabetes awareness ribbon with another charm.
The mini locket holds only 1-2 charms..the one I posted here is the medium one. The locket includes a chain.
The other product- Thirty One- are so nice. The website and catalog does not do the products justice. I love the lunch bag because it's thermal and keeps my foods cold for long days at class. And the patterns are just too cute. My other favorite bag is their every-wear wallet..it's big and has a strap you can pull out when you want to just take your cards and go and not have your whole purse!
We are closing out the party in a few days (by Saturday) so please order soon if you are planning on it. We've already raised $191 for Katie's Warriors doing this party and we thank our family and friends for supporting us in this journey! Thanks!
7.19.2013
The Mom Card
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| On her way to the new job! |
To say she was annoyed with me for showing up and standing outside her work was an understatement. But she then thanked me because I said her sugar was way too low and she looked horrible. We got her a burger and salad and went home. She's spiking high and swinging low all week. Then on Wednesday she texted me from the 2nd job- GameStop to say she *really* didn't feel well. Her coworker convinced her to sit down and drink some soda..but she said she was really tired and just didn't feel good. I didn't even hesitate. Enough was enough. It's stressful enough to be on the receiving end of these texts -can you imagine being her body going through it? So I called the store and told them that she could NOT work her shift and this would be her last day. I said I was sorry but she's endangering her health out of some misguided sense of obligation.
I was lucky in that my uncle (in from out of town) and my mom had decided to follow me back to my house. (In another story- my 98 year old grandmother is staying here right now while her house is getting new windows and doors!) Thank goodness they were in the area and could help me with the logistics. By the time I got to the store she was weaving and looking super pale. And was out of it. In the 15 min it takes to get home, she actually started feeling a bit better. My uncle took her, my mom took her car and I went to get her food and meds.
I'm telling you as a parent- sometimes you have to play this card. Even with the older adults. She does NOT recognize she's low at all. Ever it seems. Sometimes she will catch it but usually she has no idea. She did this at Starbucks...who adore her and the staff recognized it before she did because she was holding her head. They forced her to take a break and test her blood and lo and behold- low low low. They told me that they would all carry my phone number and be trained on the glucagon so she's safe and she can take whatever breaks she needs. They've been so supportive. She literally was diagnosed on the day they hired her.
And that bike she learned to ride? Didn't happen without training wheels until she was in middle school. We tried to get her to ride without them. Sometimes it just takes what it takes.
7.14.2013
Doctor, Lawyer, Indian Chief
Do you remember this childhood rhyme?
Rich Man, Poor Man,
Beggar Man, Thief, Doctor, Lawyer, Indian Chief. For some reason it came to mind when I was trying to think of a subject for this post. :) This is what I feel like now...lawyer- or at least crafty when dealing with the insurance. Doctor, nurse and everything else. I've been reading other blogs and I realize this is NORMAL. But it's tiring. I feel like I'm on a tightrope because Katie is 18 and an adult and she's obviously wanting to be treated like an adult. But is it wrong of me to want to make sure she has everything she needs? She was going to a friend's house tonight and I tried about 20x to get her to agree to have the friend here. She KNEW why I was doing it and pushed back equally as hard. I had to literally bite my tongue when I asked her final plans and she said that he was picking her up here and bringing here to hang out at his place. Now I'm sitting here trying NOT to obsessively text her over and over. I'm trying guys. I'm human though.
Case in point. Yesterday she was getting ready for work and I let her figure out what she needed. I believe I even asked as she was flying out the door if she had everything she needed. Then she texted me she had NO snack with her. You have to understand - she and I live by her meals. She has to - literally. Especially when working and doing physical activity - her numbers drop too low. But I just told her to go to Target next door and get a snack. And honestly- she figured it out. Her best friend Mel was heading up there and was able to get her a snack. I wasn't trying to be unfeeling but she has to learn. I won't always be there for her and that kills me. It's why I wish unrealistically that she had gotten diagnosed when she was little. I feel like it's SO much harder to have a new adult be diagnosed. As if she doesn't have enough to be responsible for???
So..I let her go today...I have texted her a few times and she is understanding more that I need to hear from her. Need a text with her bs numbers. And once in awhile..her lows are low and she gets freaked and asks to sleep with me and I gladly make room in the bed for her.....gladly....
This disease scares the heck out of me. I think because I want to be in control all the time and it feels like we are falling down the rabbit hole.
I know more about carb counting and insulin amounts and things I never signed up for. For those who know me- I was a creative person. Trained originally years ago to be an elementary school teacher. Went on to own a scrapbook store but when that store failed in the economy I did something so drastic my close friends and family (but not Kevin..he always knew or believed in me) thought I had lost it. I went back to get a degree in Science. I don't know if Kevin was rubbing off on me or what, but when he asked me what I wanted to do - that is what I said- BIOLOGY. I believe we are on this path due to fate or whatever and this obviously was something I started studying for a reason a few years ago. Little did I know it would be to help my daughter stay healthy and live a long life!
I'm so glad I paid so close attention in all my courses..I know more about our cells and how they work from even before this disease....time to close down for the night...think it's about time to text my oldest. I'm sure she will forgive me. I always was a mama bear when someone was poking my kids..it's amazing to me how much like the mom in Steel Magnolias I can be when pushed....I'll do anything to make sure my daughter is ok. Even if it means incurring her wrath for texting her numerous times in a night. One day when she has a child she will get it!
Rich Man, Poor Man,
7.13.2013
Carbs, carbs and more carbs
We have more numbers running through our head each day. I don't know how Katie keeps it all straight. I just don't. But she has to count every single carb. Every. Single. Carb. She started with the Diabetes App ($7)
But then decided to change over to the MyFitnessPal because it tracks her exercise, water and everything and provides a more clear picture to what is going on with her body. MyFitnessPal was free I want to say and it tracks all your food..plus you can scan the barcode to find out the exact carbs. Still everyday is a process....you have to know how to estimate them..and when she is on a pump she will need to be able to do this correctly.
Why? Well as far as I understand to date- the pump and even insulin shots- give a specific amount of insulin anticipating that you will be eating x amount of carbs at a meal. This is difficult to estimate. What happens if you inject a set amount (more difficult when you have an insulin pump) and then a) the food isn't delivered to your table quick enough or b) you've eaten only 1/2 the meal and calculated for more carbs?
I know a lot of people do the low carb diet, etc. But your body truly needs 45g (55g if you are a male) at each meal. Then another 15 g for snacks. There are simple carbs and complex carbs. She can eat sugar..but her body can't process it without the insulin.
Diet or diabetic foods she needs to avoid since they put in more fat to make them palatable. So she has to just eat less of the stuff she normally eats. Save fast food and sweets for the once-in-awhile. And as she does it- so do we. The good part of keeping count and exercising is that I've lost 3 lbs! LOL
She has to be as precise as possible. Things we put in our mouths and don't think about will not work for her without counting carbs. She can eat proteins and stuff without counting it but her numbers are not staying "stable". I put that in quotes because stability as we know it is gone. Illness, activity and a host of other things (sunburn, etc) can affect her blood sugars. Chinese food sends her numbers through the roof (and not even fried food) and so did Pizza Hut pizza....My homemade pizza was fine. So it will be a learning curve!
But then decided to change over to the MyFitnessPal because it tracks her exercise, water and everything and provides a more clear picture to what is going on with her body. MyFitnessPal was free I want to say and it tracks all your food..plus you can scan the barcode to find out the exact carbs. Still everyday is a process....you have to know how to estimate them..and when she is on a pump she will need to be able to do this correctly.
Why? Well as far as I understand to date- the pump and even insulin shots- give a specific amount of insulin anticipating that you will be eating x amount of carbs at a meal. This is difficult to estimate. What happens if you inject a set amount (more difficult when you have an insulin pump) and then a) the food isn't delivered to your table quick enough or b) you've eaten only 1/2 the meal and calculated for more carbs?
I know a lot of people do the low carb diet, etc. But your body truly needs 45g (55g if you are a male) at each meal. Then another 15 g for snacks. There are simple carbs and complex carbs. She can eat sugar..but her body can't process it without the insulin.
Diet or diabetic foods she needs to avoid since they put in more fat to make them palatable. So she has to just eat less of the stuff she normally eats. Save fast food and sweets for the once-in-awhile. And as she does it- so do we. The good part of keeping count and exercising is that I've lost 3 lbs! LOL
She has to be as precise as possible. Things we put in our mouths and don't think about will not work for her without counting carbs. She can eat proteins and stuff without counting it but her numbers are not staying "stable". I put that in quotes because stability as we know it is gone. Illness, activity and a host of other things (sunburn, etc) can affect her blood sugars. Chinese food sends her numbers through the roof (and not even fried food) and so did Pizza Hut pizza....My homemade pizza was fine. So it will be a learning curve!
When it rains, It Pours....
So we get Kev's scan results back on Thurs..or maybe it was Wed...hard to remember now. Just to update those not in the know- Kev is my husband of almost 19 years (together almost 20 years now). He had a horrible accident in early May and the car hydroplaned and rolled off the highway in Michigan. He had a horrible concussion and somehow managed to convince the paramedics to release him- or they just didn't offer to bring him to the ER. When he came to in the car- they were there standing over him..strangely they didn't stabilize his neck or anything. SO weird. Anyway we picked him up at a Big Boy restaurant where the state trooper dropped him off (INJURED) and the poor waitress was beside herself keeping an eye on him and getting reamed out by her bosses for letting him stay.
Anyway- his CT scan was not clear....it took me arguing to convince him to see our doc and even more to get him to get a CT. We were surprised when it came back that he had hydrocephalus - moderate to severe. We were told we should see a neurosurgeon ASAP but we waited another month to re-do the CT scan. After that scan it appears there has been no change so we go to see the neurosurgeon on the 29th of July.
Another binder will most likely be started to keep track of his bills, etc :)
And we will keep you all posted. Please keep us in your thoughts and prayers!
Anyway- his CT scan was not clear....it took me arguing to convince him to see our doc and even more to get him to get a CT. We were surprised when it came back that he had hydrocephalus - moderate to severe. We were told we should see a neurosurgeon ASAP but we waited another month to re-do the CT scan. After that scan it appears there has been no change so we go to see the neurosurgeon on the 29th of July.
Another binder will most likely be started to keep track of his bills, etc :)
And we will keep you all posted. Please keep us in your thoughts and prayers!
7.11.2013
Everything and the kitchen sink
Katie is carrying SO many items with her these days. The education we went to was awesome..they gave her a customized (glorified I guess) lunchbox. So at least her needles are not visible, etc She carries in this little lunchbox:
-glucose monitor
-strips
-lancets
-lancing device
-carb counting book
-sharps container
-insulin pen
-needles for that pen
-glucose tablets
-snack
-logbook
-glucagon (sort of big container with her shot and glucagon for if she goes hypoglycemic)
and probably some other stuff I am forgetting. She carries this everywhere with her. To bed, to the store, to the car. She can't leave it in the car because the insulin can denature in extreme heat or cold (it's a protein folks...and yes she knows the word denature..from me and her AP Bio class).
The goal is to do away with some of this stuff...the strips will still be there..the glucose monitor I believe becomes integrated with her pump but that means all new test strips..at all new $$$ and arguing with the insurance company.
Actually reading over her list I'm laughing b/c really the ONLY item she won't be carrying will be the insulin - I think..but then again- when she needs to bolus- then what?
This is a lot of stuff to figure out!
-glucose monitor
-strips
-lancets
-lancing device
-carb counting book
-sharps container
-insulin pen
-needles for that pen
-glucose tablets
-snack
-logbook
-glucagon (sort of big container with her shot and glucagon for if she goes hypoglycemic)
and probably some other stuff I am forgetting. She carries this everywhere with her. To bed, to the store, to the car. She can't leave it in the car because the insulin can denature in extreme heat or cold (it's a protein folks...and yes she knows the word denature..from me and her AP Bio class).
The goal is to do away with some of this stuff...the strips will still be there..the glucose monitor I believe becomes integrated with her pump but that means all new test strips..at all new $$$ and arguing with the insurance company.
Actually reading over her list I'm laughing b/c really the ONLY item she won't be carrying will be the insulin - I think..but then again- when she needs to bolus- then what?
This is a lot of stuff to figure out!
7.10.2013
Hitting that wall
For my friends and family- seriously? Did I not predict locusts soon? So Katie had a car accident in October- with Mike in the car after the homecoming game. Her fault but the car was totaled and they were lucky to get out alive. Then after that in the spring our house flooded with the bad storms that flooded the Chicago area. We pulled up all the carpet in the basement (after sucking up 2 inches of water), replaced the sump pump and carried on. Then in May- Kev was driving back from MI and got in a major accident- car rolled, he's lucky to be alive. Dishwasher dies next...and now the fridge is starting to go. Plus we get word that Kev's CT scan was NOT clear like we had hoped.....so we have to go a neurologist now to see what is going on with his brain (I'm glad that the ct scan caught *it* - whatever it may be). Katie got diabetes and I just keep saying- ok this is it right? I mean how much more can we all deal with?
I'm calling 2012-2013- the year I'd like to forget. Please. :) Every single event has corresponded to me being in the field doing my research for my thesis...can I just say that I am nervously looking at August field day? I mean really. I just don't want to hear the next worst thing.
Now we have it easy compared to others..I know this....and I am so grateful. So for each of those things:
October- car totaled- but my kids survived...amazing!!!!! Plus we got a replacement used car that was not that much money out of pocket. (Ok 4 grand is a lot but it could have been worse right?)
Spring- it flooded but lots of people lost their whole homes. I lost carpet and padding. Yes the basement has some issues (We are pulling off baseboards this weekend to see if there is hidden mold- I'm deathly allergic) but otherwise we got off rather easy with it. And a desktop computer might have bitten the dust since the tower sat on the carpet. But overall- we have a house- it wasn't leveled with the tornado, etc and so on.
May- Kev is alive....and in an odd twist when I called the guy I got my red Jetta TDI from- he had just gotten one at auction that very day and it was the first Jetta he got his hands on since the last one- he sold us. :) So that's a good twist. The insurance company covered all but a few hundred to replace that car (unlike the van that had collision only) and Kev is alive. Major fluid on brain- but he is functional.
Oh and Kev's car? Imagine the van times 20. The whole top of the car was mangled as it rolled a few times...the car un-useable totally.
Dishwasher? The new one is so quiet..we could have just done dishes by hand and I would have gladly- but am so grateful I don't have to! I love, love, love the new dishwasher :)
So maybe we are having a run of good luck to go along with our bad luck? I have to keep on looking at the silver lining because if I don't I might not make it. It's funny- a professor at my school suggested back when Katie got in the accident that I drop out of the program and yet I am still plugging away. To heck with that. We can make it through this. I firmly believe G-d doesn't give us more than we can handle...and hoping that he opens that window soon if the door is closed..because beating my head against it seems counterproductive!
I'm calling 2012-2013- the year I'd like to forget. Please. :) Every single event has corresponded to me being in the field doing my research for my thesis...can I just say that I am nervously looking at August field day? I mean really. I just don't want to hear the next worst thing.
 |
| October Crash- bye bye van! |
Now we have it easy compared to others..I know this....and I am so grateful. So for each of those things:
October- car totaled- but my kids survived...amazing!!!!! Plus we got a replacement used car that was not that much money out of pocket. (Ok 4 grand is a lot but it could have been worse right?)
Spring- it flooded but lots of people lost their whole homes. I lost carpet and padding. Yes the basement has some issues (We are pulling off baseboards this weekend to see if there is hidden mold- I'm deathly allergic) but otherwise we got off rather easy with it. And a desktop computer might have bitten the dust since the tower sat on the carpet. But overall- we have a house- it wasn't leveled with the tornado, etc and so on.
 |
| Flood of 2013 |
May- Kev is alive....and in an odd twist when I called the guy I got my red Jetta TDI from- he had just gotten one at auction that very day and it was the first Jetta he got his hands on since the last one- he sold us. :) So that's a good twist. The insurance company covered all but a few hundred to replace that car (unlike the van that had collision only) and Kev is alive. Major fluid on brain- but he is functional.
Oh and Kev's car? Imagine the van times 20. The whole top of the car was mangled as it rolled a few times...the car un-useable totally.
Dishwasher? The new one is so quiet..we could have just done dishes by hand and I would have gladly- but am so grateful I don't have to! I love, love, love the new dishwasher :)
So maybe we are having a run of good luck to go along with our bad luck? I have to keep on looking at the silver lining because if I don't I might not make it. It's funny- a professor at my school suggested back when Katie got in the accident that I drop out of the program and yet I am still plugging away. To heck with that. We can make it through this. I firmly believe G-d doesn't give us more than we can handle...and hoping that he opens that window soon if the door is closed..because beating my head against it seems counterproductive!
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