One of the interesting things about being a D parent is that your brain doesn't function the way that other people's brains do. For example, when the nuclear disaster hit Japan two years ago, my first thought was "How will the diabetics in the area get treatment?"
When the miners were trapped in Chile, I was primarily concerned about the diabetic miner and how he would survive. I guess each tale provided me with both unanswered questions and hope: unanswered because I would never know what it was like to be a miner or a Japanese person in a nuclear disaster, and hope because if people, and especially diabetics, could survive such adversities then M might have a fighting chance as well.
But then I started watching The Walking Dead, a particularly addictive series that my high school students recommended. They had been talking about it for quite a while now. I put it off up until this winter. I had finished watching all of the available episodes of Breaking Bad on Netflix and since the first three seasons of The Walking Dead are on there, I thought I'd give it a shot.
It started off as an interesting intellectual exercise: 'what would I do in this situation?', etc. And although I am about two-thirds of the way through season two (a good stopping point, I thought, considering the upsetting information that our protagonists have just discovered), it wasn't until I took one of Zimbio's famous quizzes that I started thinking about diabetes. The quiz? "Which Walking Dead Character are you?" Spoiler alert: there is only one difference between getting Hershel or Rick. It was the first question on the quiz: What would you look for first?
I took this quiz twice to see what would happen if I gave a different answer to the first question. Why do I care? Because the first answer I gave was "medical supplies." Result: I was Hershel.
But the answer is flawed. And not just because Zimbio's quizzes are full of questions like "pick a color."
I fully acknowledge that if my daughter did not have diabetes, medical supplies would be pretty low down on my list after shelter, food and water. But I do have a daughter with diabetes, and even if it meant that I could only keep her comfortable until the insulin expired and I could find some way to raise pigs and smoosh their pancreases into some sort of inject-able goo while not drawing the attention of zombies, I knew that I would do whatever I could to get to every pharmacy in the area.
So I took the quiz again, and wrote "shelter" for the first answer this time. It was a more honest answer, if I did not have to take diabetes into consideration.
Boom. Now I was Rick.
I decided to take a break from watching The Walking Dead for a few weeks. And not just because I am having zombie-fueled dreams virtually every night.
I have to take a break because I know that there is little I can do to prepare for any kind of colossal disaster that would save my daughter. That depresses me. Oh sure, I have the emergency kit with several infusion sets, batteries, test strips, glucagon, etc. But really, that is designed to serve for a week or two until things go back to normal.
I don't normally sit around worrying about the end of the world as we know it, but watching two or three episodes about surviving a zombie attack each week keeps it at the forefront of my mind. And I would not want to be Hershel or Rick, or even Daryl, even though he has a cool crossbow and amazing shoulders.
Part of being a D parent is letting your child know that if she works at it, everything will be "normal" for her in this life. A lie, for sure, but I know that M is enjoying her life like most teens. I know that we depend on each other as a family. And I know that as she grows more independent, I may not be around to loot the pharmacies for insulin when the zombie or robot apocolypse arrives.
So I have to sit on it, pray the world stays normal, and provide the love and support that she needs. Until then, I'm going to watch the anti-Walking Dead. Maybe some That 70's Show.
Tuesday, March 4, 2014
Monday, July 22, 2013
On her own
M attended the local public school for her freshman year, and it seemed to go well. The nurse was very thorough, sometimes to the point of being invasive. M enjoyed the nurse and her assistant, however, and the relationship was fine, even if the nurse would seem to want to give a little too much input about M's care.
Because the nurse was at a public school, she needed to be sure that all of the "t"s were crossed and the "i"s were dotted, which often left me looking like an incompetent parent.
You see, since my kids spent most of their lives in private schools, the mountain of paperwork I was required to fill each year for the public school seemed ridiculous.
I think I had a little subconscious rebellion against it too, because I would unwittingly submit incomplete paperwork. There would be a signature missing on one form, the double sided form had only one side filled out...you get the idea.
Anyhow, halfway through her sophomore year, M decided that she might meet with better success at the same private school attended by her brother.
The nurse at the public school diligently forwarded her forms to the private school, only to be met with indifference.
There is no nurse a M's new school.
There is a designated adult to deal with the storage and administration of medicines for those students who have chronic health problems, or perhaps those on medication for their ADHD (Is that considered a chronic health problem? I wonder.)
So my attitude had to shift again, toward taking on more responsibility as a family.
Honestly, it was kind of a relief.
I wrote my standard "Greetings! This is what diabetes is, and how it will likely affect you and your classroom" letter. Shortly afterwards, I received a letter from the dean of students, letting me know that all of M's teachers had met to go over my letter, and had been instructed to contact me with any questions.
I was never contacted.
Weirdly enough, when M's parent/teacher conferences came up, no one even mentioned her diabetes, because she was doing fine. Her blood sugar had been pretty even, and her grades were pretty steady. He behavior was good ( you know, for a teenaged girl), and she was making friends.
But I guess it didn't surprise me that much.
What I have learned about my daughter is that she will rise and sink to suit the occasion. In this case, she was treated like a responsible young adult, who is able to monitor and control her disease independently.
And guess what?
She is.
Because the nurse was at a public school, she needed to be sure that all of the "t"s were crossed and the "i"s were dotted, which often left me looking like an incompetent parent.
You see, since my kids spent most of their lives in private schools, the mountain of paperwork I was required to fill each year for the public school seemed ridiculous.
I think I had a little subconscious rebellion against it too, because I would unwittingly submit incomplete paperwork. There would be a signature missing on one form, the double sided form had only one side filled out...you get the idea.
Anyhow, halfway through her sophomore year, M decided that she might meet with better success at the same private school attended by her brother.
The nurse at the public school diligently forwarded her forms to the private school, only to be met with indifference.
There is no nurse a M's new school.
There is a designated adult to deal with the storage and administration of medicines for those students who have chronic health problems, or perhaps those on medication for their ADHD (Is that considered a chronic health problem? I wonder.)
So my attitude had to shift again, toward taking on more responsibility as a family.
Honestly, it was kind of a relief.
I wrote my standard "Greetings! This is what diabetes is, and how it will likely affect you and your classroom" letter. Shortly afterwards, I received a letter from the dean of students, letting me know that all of M's teachers had met to go over my letter, and had been instructed to contact me with any questions.
I was never contacted.
Weirdly enough, when M's parent/teacher conferences came up, no one even mentioned her diabetes, because she was doing fine. Her blood sugar had been pretty even, and her grades were pretty steady. He behavior was good ( you know, for a teenaged girl), and she was making friends.
But I guess it didn't surprise me that much.
What I have learned about my daughter is that she will rise and sink to suit the occasion. In this case, she was treated like a responsible young adult, who is able to monitor and control her disease independently.
And guess what?
She is.
Tuesday, July 16, 2013
Broke (or How to Replace Your Pump)
So a few months ago we had a little problem.
M's pump broke.
That's right, it broke. It started scrolling numbers independently and did not deliver insulin or anything else.
Now, I have to say that Medtronic makes a pretty tough insulin pump. M drops it on the floor from the chair in which she watches television on a fairly regular basis. It is often unprotected at the bottom of field hockey and lacrosse equipment bags, and she shoves it in the map pocket of my car when she goes for a swim on hot days.
So I can't complain. And neither can she.
We made this terminal discovery on the way home from a lacrosse game.
Typically I attend M's games so as to relieve pressure on the coaches as far as looking out for M's diabetic needs. She has not had a problem during a game since high school, but I think the girls on the team also kind of like the idea of that crazy mom coming to every game, even if it's two hours away. Bonus: I get to see her play every time. On a few occasions I have been the only "away" parent in attendance. Unfortunately for the team, I am not a yeller. I am an urgent whisperer, which means they don't really hear my cheers of support. But I digress.
Although I encourage M to take the bus back from the game as part of the team bonding experience, she has thus far declined my offer and rides with me in the car, usually chowing down on a sandwich and a bag of chips, while beating herself up over the goals that the opposing team scored.
This is how it went down:
M: (fiddling with the device) "What the....?"
Me: "What's the matter?"
M: "This stupid pump! It did this this morning, but I got it to work. Now it just won't stop scrolling numbers!"
Me: (slowing down and taking my eyes off the road), "What? It was doing it this morning?"
M: (Smacking the device with the palm of her hand) "Yeah, I thought it was the battery. But I changed the battery at school, so that's not it."
Me: "Did you try....?"
Needless to say, voices continued to rise in tension and anxiety. I had M check her bg levels.
Fortunately they were pretty even, buying us some time until we could give her an injection at home. But we soon realized that we would have to do something to solve this problem more long-term.
Since we were in the car and the pharmacy was closed, we decided to use modern technology to help solve our problem. M looked on the back of the pump and found a toll free number to call. After a brief argument in which she tried to convince ME to call, I, as the driver of the car, convinced her to dial the number.
She did. And she did an amazing job.
She talked to the representative from the company, explained who she was and what was happening. After about 10 minutes, the rep determined that M's pump was beyond repair and needed to be replaced immediately. M gave the rep all of the necessary information, and then did something very smart: she asked if it was under warranty.
Now I can truly say that my baby was growing up!
It was, indeed, under warranty, which meant that a "free" purple replacement was on its way.
M concluded the phone call with her pump company, who recommended that she contact her DNE.
With a heavy sigh, M dialed her new DNE at Dartmouth Hitchcock, knowing that it was after hours and that she would need to talk to the answering service and wait for a call back.
The DNE returned her call right away, told her to take an injection of Levemir; the long-lasting insulin that typically goes wasted in our fridge, and asked when the pump was due to arrive.
It was due to arrive in two days, which I found incredible, but the DNE found disappointing. She told M that they are typically shipped to arrive within 24 hours. Then she and M had to figure out her carb ratios and correction factors for the next couple of days of injections. The phone call concluded mere minutes before we landed in our driveway.
M moaned that she had forgotten how much more work it was to calculate, draw up insulin and inject oneself several times each day. But she also felt really proud about handling her own care, and was pleased to have a plan, even if it was less than ideal.
I was also proud. And relieved. She moved one step closer toward independence by handling an equipment malfunction without any interference from me. And I was around to witness it and see that she did it well.
When we arrived home after lacrosse practice the next day, there was a sticky note from UPS on our door. We had missed them, and our package needed a signature. The pump had arrived within 24 hours after all!
I called the number on the note, and learned that we could pick up our package in person between 8:00 pm and 9:00 pm that night. Even though the center was a 45 minute drive from our house, M and I eagerly jumped in the car to do just that.
We tore open the box in the car. Pump in hand, M gleefully looked forward to getting away from her injections yet again.
We carefully read everything in the package, and learned that we had two weeks to return the broken pump via a pre-paid envelope. Failure to do so would cause us to be billed for the entire cost of a new pump (about $6500!). Needless to say, that sucker was in the mail before I went to bed that night!
Medtronic made it pretty easy. It was brilliant that their customer service number is right next to the serial number on the pump itself. Their service was excellent, and saved M a lot of inconvenience. And M, up for the challenge, enjoyed the sweet relief of knowing that she could handle it.
M's pump broke.
That's right, it broke. It started scrolling numbers independently and did not deliver insulin or anything else.
Now, I have to say that Medtronic makes a pretty tough insulin pump. M drops it on the floor from the chair in which she watches television on a fairly regular basis. It is often unprotected at the bottom of field hockey and lacrosse equipment bags, and she shoves it in the map pocket of my car when she goes for a swim on hot days.
So I can't complain. And neither can she.
We made this terminal discovery on the way home from a lacrosse game.
Typically I attend M's games so as to relieve pressure on the coaches as far as looking out for M's diabetic needs. She has not had a problem during a game since high school, but I think the girls on the team also kind of like the idea of that crazy mom coming to every game, even if it's two hours away. Bonus: I get to see her play every time. On a few occasions I have been the only "away" parent in attendance. Unfortunately for the team, I am not a yeller. I am an urgent whisperer, which means they don't really hear my cheers of support. But I digress.
Although I encourage M to take the bus back from the game as part of the team bonding experience, she has thus far declined my offer and rides with me in the car, usually chowing down on a sandwich and a bag of chips, while beating herself up over the goals that the opposing team scored.
This is how it went down:
M: (fiddling with the device) "What the....?"
Me: "What's the matter?"
M: "This stupid pump! It did this this morning, but I got it to work. Now it just won't stop scrolling numbers!"
Me: (slowing down and taking my eyes off the road), "What? It was doing it this morning?"
M: (Smacking the device with the palm of her hand) "Yeah, I thought it was the battery. But I changed the battery at school, so that's not it."
Me: "Did you try....?"
Needless to say, voices continued to rise in tension and anxiety. I had M check her bg levels.
Fortunately they were pretty even, buying us some time until we could give her an injection at home. But we soon realized that we would have to do something to solve this problem more long-term.
Since we were in the car and the pharmacy was closed, we decided to use modern technology to help solve our problem. M looked on the back of the pump and found a toll free number to call. After a brief argument in which she tried to convince ME to call, I, as the driver of the car, convinced her to dial the number.
She did. And she did an amazing job.
She talked to the representative from the company, explained who she was and what was happening. After about 10 minutes, the rep determined that M's pump was beyond repair and needed to be replaced immediately. M gave the rep all of the necessary information, and then did something very smart: she asked if it was under warranty.
Now I can truly say that my baby was growing up!
It was, indeed, under warranty, which meant that a "free" purple replacement was on its way.
M concluded the phone call with her pump company, who recommended that she contact her DNE.
With a heavy sigh, M dialed her new DNE at Dartmouth Hitchcock, knowing that it was after hours and that she would need to talk to the answering service and wait for a call back.
The DNE returned her call right away, told her to take an injection of Levemir; the long-lasting insulin that typically goes wasted in our fridge, and asked when the pump was due to arrive.
It was due to arrive in two days, which I found incredible, but the DNE found disappointing. She told M that they are typically shipped to arrive within 24 hours. Then she and M had to figure out her carb ratios and correction factors for the next couple of days of injections. The phone call concluded mere minutes before we landed in our driveway.
M moaned that she had forgotten how much more work it was to calculate, draw up insulin and inject oneself several times each day. But she also felt really proud about handling her own care, and was pleased to have a plan, even if it was less than ideal.
I was also proud. And relieved. She moved one step closer toward independence by handling an equipment malfunction without any interference from me. And I was around to witness it and see that she did it well.
When we arrived home after lacrosse practice the next day, there was a sticky note from UPS on our door. We had missed them, and our package needed a signature. The pump had arrived within 24 hours after all!
I called the number on the note, and learned that we could pick up our package in person between 8:00 pm and 9:00 pm that night. Even though the center was a 45 minute drive from our house, M and I eagerly jumped in the car to do just that.
We tore open the box in the car. Pump in hand, M gleefully looked forward to getting away from her injections yet again.
We carefully read everything in the package, and learned that we had two weeks to return the broken pump via a pre-paid envelope. Failure to do so would cause us to be billed for the entire cost of a new pump (about $6500!). Needless to say, that sucker was in the mail before I went to bed that night!
Medtronic made it pretty easy. It was brilliant that their customer service number is right next to the serial number on the pump itself. Their service was excellent, and saved M a lot of inconvenience. And M, up for the challenge, enjoyed the sweet relief of knowing that she could handle it.
Saturday, February 2, 2013
Meter
When M first acquired her Medtronic minimed insulin pump, it came with the niftiest little thing: a meter that communicated M's bg levels to her pump after she tested her blood.
After testing her blood, her pump would vibrate in recognition of the information, and then would propose a course of action, as in :"Hey, your blood sugar is 239 mg/dl, I think you should take a dose of 4 units of insulin to bring it back to range. Shall I go ahead and do that for you?" M would press various buttons to confirm the action, or type in how many carbs she was planning to eat at that time so that the pump could recalculate her dose for her. Either way, it saved her some steps in calculating.
About a year ago, M's bg levels were high (250-300) for a few weeks, despite our best efforts to keep firm control on her levels, frequent checks, etc.
When we visited the endocrinologist, we learned that M's A1c was 6.3, which we found odd, as that is very close to the normal non-diabetic range.
We explained our confusion about the numbers that were being shared with us, and the endocrinologist, without even glancing at any of our devices said, "Oh, her meter is broken. Here's another one."
The one she gave us was a free sample left behind by a representative. It did not communicate with M's pump directly, but she could plug into the pump the numbers that her meter gave her, and the pump would still perform the calculations as before.
I think both M and I agreed that the best part of this meter was that it used nice ultra-thin lancets in the lancing device, One Touch Delica. The thinner lancets would help her to avoid callouses on her fingers, and didn't hurt nearly as much to use. So all was fine.
When M recently visited her new DNE, she asked about M's meter, and whether she typed in the low bg levels that she received on her meter into her pump. M said no, she normally just ate or drank something to bring her bg back up. Short answer, not all of her bg levels were stored in the tiny computer in her pump. The DNE had the meter 's information downloaded separately so that she could get a more accurate picture of M's profile.
She advised us to call the pump company and ask for a new meter, which she implied would likely be sent to us at no charge. But after a moment's thought, she searched in her storage room and found a meter that could communicate with M's pump, and gave it to us.
I had forgotten how convenient having such a meter was. This one is called the Contour Next Link.
One of the things I like about this meter is that the numbers are very bright and large for the first few seconds after you take a reading. This means that we do not have to turn on the light for middle of the night checks, and I can see M's results without peering over her shoulder.
I also like the test strips that go with it. They require a lot less blood than the last ones we used. Furthermore, the strips are packed in cylinders of 50 strips instead of 25 strips, which means there is less waste (As a tree-hugging dirt worshiper, I feel that anything we can do to cut down on the landfill that each diabetic is responsible for creating, the better.)
I am glad that we are hitting the point in our relationship with this disease that we can start to identify personal preferences in products. Anything we can do to make M more comfortable and that makes managing this disease easier is a gift.
A few days after gushing to one of diabetic students about this new meter, I received a flyer about it. Apparently, Bayer 9the new meter's creator) is providing every owner of the Medtronic pump a free replacement meter.
Back up meter, here we come! I guess that whole piece about spending a wad of cash to keep your diabetic child alive pays off when someone is willing to throw you a freebie now and then.
In the meantime, M and I are loving the new gizmos.
After testing her blood, her pump would vibrate in recognition of the information, and then would propose a course of action, as in :"Hey, your blood sugar is 239 mg/dl, I think you should take a dose of 4 units of insulin to bring it back to range. Shall I go ahead and do that for you?" M would press various buttons to confirm the action, or type in how many carbs she was planning to eat at that time so that the pump could recalculate her dose for her. Either way, it saved her some steps in calculating.
About a year ago, M's bg levels were high (250-300) for a few weeks, despite our best efforts to keep firm control on her levels, frequent checks, etc.
When we visited the endocrinologist, we learned that M's A1c was 6.3, which we found odd, as that is very close to the normal non-diabetic range.
We explained our confusion about the numbers that were being shared with us, and the endocrinologist, without even glancing at any of our devices said, "Oh, her meter is broken. Here's another one."
The one she gave us was a free sample left behind by a representative. It did not communicate with M's pump directly, but she could plug into the pump the numbers that her meter gave her, and the pump would still perform the calculations as before.
I think both M and I agreed that the best part of this meter was that it used nice ultra-thin lancets in the lancing device, One Touch Delica. The thinner lancets would help her to avoid callouses on her fingers, and didn't hurt nearly as much to use. So all was fine.
When M recently visited her new DNE, she asked about M's meter, and whether she typed in the low bg levels that she received on her meter into her pump. M said no, she normally just ate or drank something to bring her bg back up. Short answer, not all of her bg levels were stored in the tiny computer in her pump. The DNE had the meter 's information downloaded separately so that she could get a more accurate picture of M's profile.
She advised us to call the pump company and ask for a new meter, which she implied would likely be sent to us at no charge. But after a moment's thought, she searched in her storage room and found a meter that could communicate with M's pump, and gave it to us.
I had forgotten how convenient having such a meter was. This one is called the Contour Next Link.
One of the things I like about this meter is that the numbers are very bright and large for the first few seconds after you take a reading. This means that we do not have to turn on the light for middle of the night checks, and I can see M's results without peering over her shoulder.
I also like the test strips that go with it. They require a lot less blood than the last ones we used. Furthermore, the strips are packed in cylinders of 50 strips instead of 25 strips, which means there is less waste (As a tree-hugging dirt worshiper, I feel that anything we can do to cut down on the landfill that each diabetic is responsible for creating, the better.)
I am glad that we are hitting the point in our relationship with this disease that we can start to identify personal preferences in products. Anything we can do to make M more comfortable and that makes managing this disease easier is a gift.
A few days after gushing to one of diabetic students about this new meter, I received a flyer about it. Apparently, Bayer 9the new meter's creator) is providing every owner of the Medtronic pump a free replacement meter.
Back up meter, here we come! I guess that whole piece about spending a wad of cash to keep your diabetic child alive pays off when someone is willing to throw you a freebie now and then.
In the meantime, M and I are loving the new gizmos.
Monday, January 21, 2013
Change
Change can be hard.
It can also be also be a chance to reflect on what is important.
This sweeping statement sounds somewhat romantic until you learn that I am talking about health insurance.
Up until recently, M was covered on her father's PPO coverage at his place of employment. This worked out pretty well on the day she was diagnosed. We paid about $38 each time we visited a specialist, and about $84 per month on insulin, and $87 per month on test strips. Also, we paid about $50 every six months for lancers, since M only changes them about once per day. Infusion sets cost us about $240 every quarter, so about $800-$1,000 per year.
All of this totals roughly $3100 per year in maintenance.
All very interesting, I'm sure.
But then Daddy got a new job. And insurance doesn't kick in for 90 days.
Okay then, let's get on Mommy's insurance plan: an HMO.
The insurance itself costs less, for sure. And prescriptions are a lot cheaper: $15 for test strips and insulin. Doctor's visits are $10. But M's current endocrinologist is not on the plan. In HMO speak, this means that the insurance will not pay anything toward M's care if we see her current doctor. At least on the PPO, if M's specialist was not on the plan, we would still get some coverage, but not as much as those "participating" in the plan.
So now what?
We have to change doctors.
We have been thinking about this for a while, anyhow.
After all, M's diabetes nurse educator would frequently give us conflicting advice, and although we asked repeatedly to be part of trials, we were never even told if any were going on. I assume that we were put toward the bottom of the list due to the fact that we live over one and a half hours from the hospital.
Fortunately, we have heard many great things about the hospital just 40 minutes away.
Searching the web, I learn which doctors are on our plan, which is somewhat helpful, but I can't find any information about the doctors themselves. So I turn to my new resource: the STAR parents.
I send an e-mail to the group explaining our situation, and within two days I have the names of the two favorite pediatric endocrinologists in the Dartmouth area, as well as the name of a favorite Diabetes Nurse Educator.
I contact our PCP (Primary Care Physician) and request that we be referred to the new doctor. (For all of you Russians out there who are mysteriously reading my blog, we in the States cannot refer ourselves to our own specialists: another doctor must "officially" make the request in order for our insurance to approve and pay for the visits.)
Service was excellent, and within a week I received a phone call from the new hospital confirming an appointment with our new DNE. The copay for the visit was $10.
So an HMO doesn't sound too bad, does it? Lower prescription prices (even if they do give us 100 fewer test strips per month), lower copay prices, a specialist nearby....
Except that if the diabetic stuff hits the fan, and we need to see someone "outside of the plan", the expenses may very well not be covered.
Which is why, after 90 days, we will be switching back to a PPO through Bill's new job. I will continue to remind myself: change can be good. But hopefully after the 90 days, we won't have to make another one for a while.
It can also be also be a chance to reflect on what is important.
This sweeping statement sounds somewhat romantic until you learn that I am talking about health insurance.
Up until recently, M was covered on her father's PPO coverage at his place of employment. This worked out pretty well on the day she was diagnosed. We paid about $38 each time we visited a specialist, and about $84 per month on insulin, and $87 per month on test strips. Also, we paid about $50 every six months for lancers, since M only changes them about once per day. Infusion sets cost us about $240 every quarter, so about $800-$1,000 per year.
All of this totals roughly $3100 per year in maintenance.
All very interesting, I'm sure.
But then Daddy got a new job. And insurance doesn't kick in for 90 days.
Okay then, let's get on Mommy's insurance plan: an HMO.
The insurance itself costs less, for sure. And prescriptions are a lot cheaper: $15 for test strips and insulin. Doctor's visits are $10. But M's current endocrinologist is not on the plan. In HMO speak, this means that the insurance will not pay anything toward M's care if we see her current doctor. At least on the PPO, if M's specialist was not on the plan, we would still get some coverage, but not as much as those "participating" in the plan.
So now what?
We have to change doctors.
We have been thinking about this for a while, anyhow.
After all, M's diabetes nurse educator would frequently give us conflicting advice, and although we asked repeatedly to be part of trials, we were never even told if any were going on. I assume that we were put toward the bottom of the list due to the fact that we live over one and a half hours from the hospital.
Fortunately, we have heard many great things about the hospital just 40 minutes away.
Searching the web, I learn which doctors are on our plan, which is somewhat helpful, but I can't find any information about the doctors themselves. So I turn to my new resource: the STAR parents.
I send an e-mail to the group explaining our situation, and within two days I have the names of the two favorite pediatric endocrinologists in the Dartmouth area, as well as the name of a favorite Diabetes Nurse Educator.
I contact our PCP (Primary Care Physician) and request that we be referred to the new doctor. (For all of you Russians out there who are mysteriously reading my blog, we in the States cannot refer ourselves to our own specialists: another doctor must "officially" make the request in order for our insurance to approve and pay for the visits.)
Service was excellent, and within a week I received a phone call from the new hospital confirming an appointment with our new DNE. The copay for the visit was $10.
So an HMO doesn't sound too bad, does it? Lower prescription prices (even if they do give us 100 fewer test strips per month), lower copay prices, a specialist nearby....
Except that if the diabetic stuff hits the fan, and we need to see someone "outside of the plan", the expenses may very well not be covered.
Which is why, after 90 days, we will be switching back to a PPO through Bill's new job. I will continue to remind myself: change can be good. But hopefully after the 90 days, we won't have to make another one for a while.
Saturday, January 12, 2013
Unpopular
In the STAR program, we had a parent meeting about 504 plans. Everyone
in the room talked about how hard it was for them to get teachers and
administrators to follow the 504 plans for their child.
When it was my turn to speak, I admitted that I didn't use a 504 plan.
The group leader was evidently distraught at the prospect of a diabetic child running around without some sort of paperwork marking her as "special".
I explained that each year I write a letter to every teacher and coach that comes into contact with M, and cc the school nurse, who is obviously aware of her condition. I believe that for M, this is special paperwork enough: especially since (so far) I have a system of open communication with the school she attends.
A parent in the group asked me if teachers allow her the special accommodations needed to manage her type 1 at school. I responded that yes, they do, although M sometimes needs to remind them that she has diabetes.
For example, M's math teacher, whom she adores, was giving a test when M realized that the tubing on her pump was leaking. Panicked, she raised her hand and asked to go to the nurse.
"Can it wait?" the teacher asked.
M shook her head, "no" and was sent on her way.
When I spoke to the same teacher at a regularly scheduled parent conference, she admitted that she had forgotten that M had diabetes. "I assumed it was a female issue", she told me.
We took that opportunity to explain what diabetes is, and the multiple ways it can present itself in class.
She was sincerely fascinated, and we nearly ran over the allotted time.
A parent in the group said that rather than having to give "mini lessons" like this to M's teachers, a 504 would educate them. and save me time. Then she told me about her yearly ritual: she holds a meeting with all of her child's teachers at the beginning of the year to explain what diabetes is, and how to care for her child. Then each teacher is handed the 504 and the care plan, and asked if they have any questions.
I listened to her, and what she said made sense. But arguing that the 504 would somehow save me time was not true. I could hold such a meeting with M's teachers and never hand them a sheet of paper.
I was smart enough not to say this, however.
But the group leader leaped on the parent's comments and took the opportunity to press the issue with me. As the entire group looked on, she explained that since the 504 is a legal document that it would protect our family. "From what?" I wondered. If something serious happens to M in school, all a 504 does is give me the right to sue the school, which, considering that I had already laid it all out in a letter, is probably true anyway. Suing a school wouldn't help me, and a 504 is no guarantee that she would get the care that she needed. I mean, I know it couldn't hurt, but with only two and a half years left of public high school, was it really worth the effort? After all, when she was in a teeny-tiny Montessori school, M didn't even have a school nurse and managed quite well.
The group leader told me that she would be happy to help me with the legalities and formation of the document, to which I shrugged and replied, "You know, it's a lot of work, and I just don't want to do it."
After that little tidbit popped out of my mouth, a nano-second of doubt occurred: a tiny moment where I felt sure that I had said the wrong thing and would be upbraided in front of my peers.
But nobody said anything, and we just moved on to another topic.
Yea me!
Now we'll see if anyone talks to me at the next meeting.
When it was my turn to speak, I admitted that I didn't use a 504 plan.
The group leader was evidently distraught at the prospect of a diabetic child running around without some sort of paperwork marking her as "special".
I explained that each year I write a letter to every teacher and coach that comes into contact with M, and cc the school nurse, who is obviously aware of her condition. I believe that for M, this is special paperwork enough: especially since (so far) I have a system of open communication with the school she attends.
A parent in the group asked me if teachers allow her the special accommodations needed to manage her type 1 at school. I responded that yes, they do, although M sometimes needs to remind them that she has diabetes.
For example, M's math teacher, whom she adores, was giving a test when M realized that the tubing on her pump was leaking. Panicked, she raised her hand and asked to go to the nurse.
"Can it wait?" the teacher asked.
M shook her head, "no" and was sent on her way.
When I spoke to the same teacher at a regularly scheduled parent conference, she admitted that she had forgotten that M had diabetes. "I assumed it was a female issue", she told me.
We took that opportunity to explain what diabetes is, and the multiple ways it can present itself in class.
She was sincerely fascinated, and we nearly ran over the allotted time.
A parent in the group said that rather than having to give "mini lessons" like this to M's teachers, a 504 would educate them. and save me time. Then she told me about her yearly ritual: she holds a meeting with all of her child's teachers at the beginning of the year to explain what diabetes is, and how to care for her child. Then each teacher is handed the 504 and the care plan, and asked if they have any questions.
I listened to her, and what she said made sense. But arguing that the 504 would somehow save me time was not true. I could hold such a meeting with M's teachers and never hand them a sheet of paper.
I was smart enough not to say this, however.
But the group leader leaped on the parent's comments and took the opportunity to press the issue with me. As the entire group looked on, she explained that since the 504 is a legal document that it would protect our family. "From what?" I wondered. If something serious happens to M in school, all a 504 does is give me the right to sue the school, which, considering that I had already laid it all out in a letter, is probably true anyway. Suing a school wouldn't help me, and a 504 is no guarantee that she would get the care that she needed. I mean, I know it couldn't hurt, but with only two and a half years left of public high school, was it really worth the effort? After all, when she was in a teeny-tiny Montessori school, M didn't even have a school nurse and managed quite well.
The group leader told me that she would be happy to help me with the legalities and formation of the document, to which I shrugged and replied, "You know, it's a lot of work, and I just don't want to do it."
After that little tidbit popped out of my mouth, a nano-second of doubt occurred: a tiny moment where I felt sure that I had said the wrong thing and would be upbraided in front of my peers.
But nobody said anything, and we just moved on to another topic.
Yea me!
Now we'll see if anyone talks to me at the next meeting.
Thursday, December 27, 2012
504, IEP, and other educational jargon
Having taught for most of my adult life, and working with high-schoolers for the last 5 years, I am quite familiar with 504s and IEPs.
An IEP is an Individual Education Plan or Program which, as a Montessori teacher, I feel every child inherently possesses. But the term IEP refers to a legal document, which outlines accommodations and special services that will be offered to students with learning disabilities while they are enrolled at their school (usually public, but not always).
A 504 plan, on the other hand, generally refers to kids with physical disabilities or special needs. This is a less involved, but still legal, document which outlines the specific needs of the student, and lets teachers and staff members at the school know how to accommodate them so that they are not academically punished for things that are beyond their control.
As a teacher in a high school, I usually receive scads of these documents at the beginning of the year. I look them over before the student joins my classroom. Then, after a few weeks of getting to know the students, I pull them out again to see if I am seeing the same person that the document outlines. I also take a moment to reflect on how to best meet his or her needs.
Some of the documents at this age act as more of an FYI: the student has a condition which may never manifest itself in the classroom, but might cause absences due to specialty visits or surgeries. Some of them are even outdated.
I was very concerned when I had a student who had, according to the document, a tremendous fear of dogs. I was instructed to give the child the option of leaving the room if a dog was ever spotted near my classroom. I thought, "When will there ever be a dog in or near my classroom?"
Well, as it happened that year, I was a "traveling" teacher (one who did not have a classroom to call her own, but borrowed other teacher's rooms for teaching). And guess what? I ended up on the ground floor of the building with a large window facing over the neighbor's yard: a neighbor who happened to be outside with her large dog throughout the entire period in which I taught this student.
Every day.
While I sweated out how to accommodate my student's needs, I discovered that the 504 was written when he was six years old. After some discussion with the student, I learned that the concerns outlined in the document no longer applied, and I needn't draw the shades during class.
Obviously with diabetes, it's different. It will always apply, because one does not outgrow it, as one might outgrow a fear of dogs.
I am not sure how much a 504 helps students with diabetes.
There are parents that swear by them (laminate that 504 and nail it to the teacher's door). I just don't happen to be one of them.
So, yeah. Sometimes M's teachers forget that she has diabetes.
But I also know diabetic students at my own school, who have very clear 504 plans, and very vocal parents, who are still given grief when they need to go to the nurse's office, or are accused of texting in class when they are actually giving themselves a bolus while using their pump. Parents can yell and point at the 504 plan. They can hold annual meetings. They can even call in a lawyer. But it really doesn't save them a lot of work. It is still up to the student to remind the adults in the room that they need accommodations.
Which I guess is the real lesson, here. While younger children might not be able to, diabetic teens need to advocate for themselves, even if it is before, during, or after class. Even if it doesn't seem fair. Even if people "should" know. Even if they don't want to talk about it in front of their peers.
The squeaky wheel gets the grease.
A good health advocate is learning skills for life.
Educating others helps us all.
Insert platitude here.
But, it's true. And M is learning that it is so. Even if she doesn't like it.
An IEP is an Individual Education Plan or Program which, as a Montessori teacher, I feel every child inherently possesses. But the term IEP refers to a legal document, which outlines accommodations and special services that will be offered to students with learning disabilities while they are enrolled at their school (usually public, but not always).
A 504 plan, on the other hand, generally refers to kids with physical disabilities or special needs. This is a less involved, but still legal, document which outlines the specific needs of the student, and lets teachers and staff members at the school know how to accommodate them so that they are not academically punished for things that are beyond their control.
As a teacher in a high school, I usually receive scads of these documents at the beginning of the year. I look them over before the student joins my classroom. Then, after a few weeks of getting to know the students, I pull them out again to see if I am seeing the same person that the document outlines. I also take a moment to reflect on how to best meet his or her needs.
Some of the documents at this age act as more of an FYI: the student has a condition which may never manifest itself in the classroom, but might cause absences due to specialty visits or surgeries. Some of them are even outdated.
I was very concerned when I had a student who had, according to the document, a tremendous fear of dogs. I was instructed to give the child the option of leaving the room if a dog was ever spotted near my classroom. I thought, "When will there ever be a dog in or near my classroom?"
Well, as it happened that year, I was a "traveling" teacher (one who did not have a classroom to call her own, but borrowed other teacher's rooms for teaching). And guess what? I ended up on the ground floor of the building with a large window facing over the neighbor's yard: a neighbor who happened to be outside with her large dog throughout the entire period in which I taught this student.
Every day.
While I sweated out how to accommodate my student's needs, I discovered that the 504 was written when he was six years old. After some discussion with the student, I learned that the concerns outlined in the document no longer applied, and I needn't draw the shades during class.
Obviously with diabetes, it's different. It will always apply, because one does not outgrow it, as one might outgrow a fear of dogs.
I am not sure how much a 504 helps students with diabetes.
There are parents that swear by them (laminate that 504 and nail it to the teacher's door). I just don't happen to be one of them.
So, yeah. Sometimes M's teachers forget that she has diabetes.
But I also know diabetic students at my own school, who have very clear 504 plans, and very vocal parents, who are still given grief when they need to go to the nurse's office, or are accused of texting in class when they are actually giving themselves a bolus while using their pump. Parents can yell and point at the 504 plan. They can hold annual meetings. They can even call in a lawyer. But it really doesn't save them a lot of work. It is still up to the student to remind the adults in the room that they need accommodations.
Which I guess is the real lesson, here. While younger children might not be able to, diabetic teens need to advocate for themselves, even if it is before, during, or after class. Even if it doesn't seem fair. Even if people "should" know. Even if they don't want to talk about it in front of their peers.
The squeaky wheel gets the grease.
A good health advocate is learning skills for life.
Educating others helps us all.
Insert platitude here.
But, it's true. And M is learning that it is so. Even if she doesn't like it.
STAR- FYI
STAR is the name of a program that M has joined this fall.
STAR: Steps Toward Adult Responsibility.
The program is sponsored by Dartmouth Hitchcock Medical Center in Lebanon, NH. The two meetings that we have attended have been on the Dartmouth College campus.
The group is for teens who have chronic conditions. Right now, the majority of them seem to have type one diabetes, but there have been students with a variety of illnesses including crohn's disease, epilepsy, and cerebral palsy.
The group is also designed for the adults who parent these young people.
It is a mentoring program. The teens get to spend time with college students who are dealing with a chronic illness, and the adults meet in a separate room with various experts and each other, to discuss the pitfalls that their children are facing, and how best to prepare them for future independence.
The kids definitely have a better time than the adults. While we are discussing care plans, we hear the kids roaring with laughter in the other room.
I first heard of the program when M attended the Winter Weekend last February. The Weekend was a program aimed at teens with type one. About 35-40 kids attended, and M enjoyed herself immensely. I had basically coerced her into going, but after attending and hearing about the STAR program, she decided that having regular meetings with others who face similar challenges might help to keep her on track, both emotionally and practically.
Now I don't know if I can draw a direct correlation between her participation in STAR and her improved attitude and A1c numbers. After all, she is maturing as well. But I do know that she is enjoying the meetings, even if they are 40 minutes away.
I enjoy them less than she. I, like most of my fellow type 1 parents, am very opinionated about what should and should not happen in the life of my child.
And we don't all agree.
But now I have a group of parents with whom I can discuss any concerns I might have.
Like how to change my doctor.
But that's another post.
STAR: Steps Toward Adult Responsibility.
The program is sponsored by Dartmouth Hitchcock Medical Center in Lebanon, NH. The two meetings that we have attended have been on the Dartmouth College campus.
The group is for teens who have chronic conditions. Right now, the majority of them seem to have type one diabetes, but there have been students with a variety of illnesses including crohn's disease, epilepsy, and cerebral palsy.
The group is also designed for the adults who parent these young people.
It is a mentoring program. The teens get to spend time with college students who are dealing with a chronic illness, and the adults meet in a separate room with various experts and each other, to discuss the pitfalls that their children are facing, and how best to prepare them for future independence.
The kids definitely have a better time than the adults. While we are discussing care plans, we hear the kids roaring with laughter in the other room.
I first heard of the program when M attended the Winter Weekend last February. The Weekend was a program aimed at teens with type one. About 35-40 kids attended, and M enjoyed herself immensely. I had basically coerced her into going, but after attending and hearing about the STAR program, she decided that having regular meetings with others who face similar challenges might help to keep her on track, both emotionally and practically.
Now I don't know if I can draw a direct correlation between her participation in STAR and her improved attitude and A1c numbers. After all, she is maturing as well. But I do know that she is enjoying the meetings, even if they are 40 minutes away.
I enjoy them less than she. I, like most of my fellow type 1 parents, am very opinionated about what should and should not happen in the life of my child.
And we don't all agree.
But now I have a group of parents with whom I can discuss any concerns I might have.
Like how to change my doctor.
But that's another post.
Saturday, December 22, 2012
Dominoes
Last week, M woke up with a pretty nice bg level: 125 mg/dl.
Then she ate a low carb breakfast of bacon, eggs, and half of a hamburger roll (Don't ask me about the hamburger roll. I was not part of that discussion, if there was one).
We arrived at church about an hour later. We were early. M reached toward the glove compartment, saying, "I feel low". She retrieved a handful of Smartees.
"Please check your blood sugar," I said.
It's 35.
We popped our seatbelts back on and cruised to the pharmacy, where I hurriedly plucked some glucose tabs off of the shelf in the back where there are about 58,000 bg meters on display. Then, knowing that M is often thirsty when her bg is especially high or low, I grabbed a water bottle.
I gratefully approached the customer-free counter, payed for the items, and jogged out to the car, where M started chomping down tabs.
I pulled out the calculator app on my phone and estimated that she should eat 3 glucose tabs (15 carbs) in addition to the two packs of Smartees (13 carbs total) that she has already eaten. Any more would start her on an upward spiral. At roughly 5 mg/dl increase per carb that M eats, she should have a nice bg level of 140, which would give us a little wiggle room.
We returned to the church, attended mass, and met M's boyfriend du jour and his mother in the parking lot afterwards. M had plans to spend time at their house that day. Since they live near the church, and not near our home, we decided to meet them there. I, at this point, am having my doubts about the wisdom of sending M to someone else's house, but I assume that her bg will be in a more comfortable range at this hour. We did the typical pre-departure bg check: 37mg/dl.
Panic ensues. I mean, she just ate a pile of pure sugar an hour ago. If anything, she should have a higher-than-ideal bg level. How could this have happened?
I had a quick conference with M. "How much did you bolus for this morning?"
Answer: "42 carbs"
I would like to pause here for a moment to point out that M handles these fact-finding inquiries much better now. A year and a half ago if I had asked any questions pertaining to figuring out "how this had happened" she would become angry, defensive, and startlingly teen-like.
But back to our story.
Let's revisit the aforementioned breakfast: bacon, eggs, half of a hamburger roll. Bacon: zero carbs. Eggs: zero carbs. A whole hamburger roll: 30 carbs so HALF should be 15 carbs. 15 carbs total for the meal. Not 42 carbs.
Insulin for 42 carbs is way more insulin than M needed this morning. We are lucky that she hasn't passed out yet. I ran into the church hall and grabbed her a coke. I ordered her to drink the whole thing: 39 carbs of fast-acting sugar. Times five is nearly 200. In theory, her bg should be 242 in a matter of minutes.
At this point I would like to point out that Boyfriend's mother is a nurse. As such, she insisted on having M over for the day despite the scary numbers we were reading in the parking lot. After all, she can handle it (which I know she can). I worriedly agreed, and asked that M promise to call me in one hour.
After two hours and no phone call, I called her. Boyfriend's mom tells me that M's bg is still low. It's about 48 - 50 mg/dl. She's having her hang around on the couch instead of helping paint the house as planned. She is forcing orange juice in 4 oz portions. She is making her check her bg every half hour.
Two more hours went by, and I called again. This time I spoke with M. She told me that her bg was now 325. After multiple attempts to bring up her bg, we have now overcompensated. She just bolused, sending insulin through her body to bring her bg back to normal. Boyfriend's mom tells M that she expected this. That we all expected this. Now we need to be careful and not overdo it again.
But no luck. When I picked up M two hours later, her bg was 53.
AAAAAUGH!
After 24 hours, we were back on course. But there is a valuable lesson to be learned here: really think about the number of carbs for which you are bolusing. Over-correction can be frustrating, time-consuming, exhausting, and dangerous.
And it can set off a chain-reaction for which we are unprepared.
It's amazing how life stops when these incidents happen. Our only focus is to get back to normal.
Well, diabetic normal.
Let's just say that rather than cleaning up after ourselves, it's easier not to start tipping that row of dominoes to begin with.
And let's thank God that that these incidents don't happen very often.
Then she ate a low carb breakfast of bacon, eggs, and half of a hamburger roll (Don't ask me about the hamburger roll. I was not part of that discussion, if there was one).
We arrived at church about an hour later. We were early. M reached toward the glove compartment, saying, "I feel low". She retrieved a handful of Smartees.
"Please check your blood sugar," I said.
It's 35.
We popped our seatbelts back on and cruised to the pharmacy, where I hurriedly plucked some glucose tabs off of the shelf in the back where there are about 58,000 bg meters on display. Then, knowing that M is often thirsty when her bg is especially high or low, I grabbed a water bottle.
I gratefully approached the customer-free counter, payed for the items, and jogged out to the car, where M started chomping down tabs.
I pulled out the calculator app on my phone and estimated that she should eat 3 glucose tabs (15 carbs) in addition to the two packs of Smartees (13 carbs total) that she has already eaten. Any more would start her on an upward spiral. At roughly 5 mg/dl increase per carb that M eats, she should have a nice bg level of 140, which would give us a little wiggle room.
We returned to the church, attended mass, and met M's boyfriend du jour and his mother in the parking lot afterwards. M had plans to spend time at their house that day. Since they live near the church, and not near our home, we decided to meet them there. I, at this point, am having my doubts about the wisdom of sending M to someone else's house, but I assume that her bg will be in a more comfortable range at this hour. We did the typical pre-departure bg check: 37mg/dl.
Panic ensues. I mean, she just ate a pile of pure sugar an hour ago. If anything, she should have a higher-than-ideal bg level. How could this have happened?
I had a quick conference with M. "How much did you bolus for this morning?"
Answer: "42 carbs"
I would like to pause here for a moment to point out that M handles these fact-finding inquiries much better now. A year and a half ago if I had asked any questions pertaining to figuring out "how this had happened" she would become angry, defensive, and startlingly teen-like.
But back to our story.
Let's revisit the aforementioned breakfast: bacon, eggs, half of a hamburger roll. Bacon: zero carbs. Eggs: zero carbs. A whole hamburger roll: 30 carbs so HALF should be 15 carbs. 15 carbs total for the meal. Not 42 carbs.
Insulin for 42 carbs is way more insulin than M needed this morning. We are lucky that she hasn't passed out yet. I ran into the church hall and grabbed her a coke. I ordered her to drink the whole thing: 39 carbs of fast-acting sugar. Times five is nearly 200. In theory, her bg should be 242 in a matter of minutes.
At this point I would like to point out that Boyfriend's mother is a nurse. As such, she insisted on having M over for the day despite the scary numbers we were reading in the parking lot. After all, she can handle it (which I know she can). I worriedly agreed, and asked that M promise to call me in one hour.
After two hours and no phone call, I called her. Boyfriend's mom tells me that M's bg is still low. It's about 48 - 50 mg/dl. She's having her hang around on the couch instead of helping paint the house as planned. She is forcing orange juice in 4 oz portions. She is making her check her bg every half hour.
Two more hours went by, and I called again. This time I spoke with M. She told me that her bg was now 325. After multiple attempts to bring up her bg, we have now overcompensated. She just bolused, sending insulin through her body to bring her bg back to normal. Boyfriend's mom tells M that she expected this. That we all expected this. Now we need to be careful and not overdo it again.
But no luck. When I picked up M two hours later, her bg was 53.
AAAAAUGH!
After 24 hours, we were back on course. But there is a valuable lesson to be learned here: really think about the number of carbs for which you are bolusing. Over-correction can be frustrating, time-consuming, exhausting, and dangerous.
And it can set off a chain-reaction for which we are unprepared.
It's amazing how life stops when these incidents happen. Our only focus is to get back to normal.
Well, diabetic normal.
Let's just say that rather than cleaning up after ourselves, it's easier not to start tipping that row of dominoes to begin with.
And let's thank God that that these incidents don't happen very often.
Sunday, December 16, 2012
New Traditions
It's weird how having a child with a chronic illness can creep not just into your lives and habits, but also into the lives and habits of those around you.
Case in point: birthdays.
I have blogged in the past about cake. I hate it. It seems to be cake, above all, that M's body and insulin together cannot handle.
And yet it is everywhere.
But not in our family.
In our family, we have a new tradition: ice cream cake.
This tradition began with M's birthday.
Since she cannot eat cake without having uncontrollable bg numbers for 24 hours, we began looking for other fun options. We tried ice cream cake. While it still has huge numbers of calories and carbs, the carbs seem to seep into M's system at a more steady rate than regular cake, and are therefore easier to manage over the 24 hour span that follows.
When we first figured out M's cake issues, she simply ate the ice cream at birthday parties, with no complaint from her, nor from me or Bill.
It wasn't until my father's birthday that I realized that ice cream cake was the new family tradition. Grandparents, aunts, uncles, nieces and nephews all shared ice cream cake at Papa's birthday without even a question. No reference to regular cake was made. It was as if we had eaten ice cream cake at birthday parties all along.
Which leaves me with a few thoughts. A) I have a very cool, thoughtful, and supportive family, B) Everything changes when you have a kid with diabetes, C) Diabetes can't stop you from having fun unless you let it. and D) Change, while sometimes annoying and unwelcome, can be good.
Case in point: birthdays.
I have blogged in the past about cake. I hate it. It seems to be cake, above all, that M's body and insulin together cannot handle.
And yet it is everywhere.
But not in our family.
In our family, we have a new tradition: ice cream cake.
This tradition began with M's birthday.
Since she cannot eat cake without having uncontrollable bg numbers for 24 hours, we began looking for other fun options. We tried ice cream cake. While it still has huge numbers of calories and carbs, the carbs seem to seep into M's system at a more steady rate than regular cake, and are therefore easier to manage over the 24 hour span that follows.
When we first figured out M's cake issues, she simply ate the ice cream at birthday parties, with no complaint from her, nor from me or Bill.
It wasn't until my father's birthday that I realized that ice cream cake was the new family tradition. Grandparents, aunts, uncles, nieces and nephews all shared ice cream cake at Papa's birthday without even a question. No reference to regular cake was made. It was as if we had eaten ice cream cake at birthday parties all along.
Which leaves me with a few thoughts. A) I have a very cool, thoughtful, and supportive family, B) Everything changes when you have a kid with diabetes, C) Diabetes can't stop you from having fun unless you let it. and D) Change, while sometimes annoying and unwelcome, can be good.
Thursday, December 13, 2012
Sick kittens and other things that piss me off
Not long ago, I saw this article in my local newspaper (yeah, I read the paper, and not on line either).
Campaign for a kitten
The article is about a woman who adopted a 9 week old kitten, only to learn that it has a birth defect. Its ribs are growing the wrong way so that they will not protect his heart. In fact they will eventually pierce his heart an kill him.
The woman is heartbroken and decides to raise money for the surgery, which will need to be performed twice, because he will grow and change, and they will need a special casts that will need to accommodate his growing body, etc. (For Seinfeld fans, I am reminded of this quote from George Costanza: "So they're flying in special tiny instruments from El Paso") The estimated cost for all of the kitten's needs is about $1500. Donations could be made to the "Misty the Kitten" fund.
So how did that work out, you might wonder? After all, that is a ridiculous amount of money to raise in a short period of time.
But when Misty reached 11 weeks, the campaign had raised $2046 with 12 days left in the campaign.
WHAT!??!
Not to sound bitter, but I can't even get my coworkers to give me $5 for diabetes research. Diabetes, which kills thousands upon thousands of people every year.
But wait, there's more. This happens: Misty the Kitten Dies Post-Surgery.
Super.
Stupid kitten.
Now the woman who created the fund has a bunch of money left over and she wants to use it to support other hopeless sick kitten cases.
So once in a while I read another article about some other hopeless case of a cat that would probably prefer sweet death to another pointless and painful surgery using the LEFTOVER FUNDS from the "Misty the Kitten" fund.
Fine world, have it your way.
Campaign for a kitten
The article is about a woman who adopted a 9 week old kitten, only to learn that it has a birth defect. Its ribs are growing the wrong way so that they will not protect his heart. In fact they will eventually pierce his heart an kill him.
The woman is heartbroken and decides to raise money for the surgery, which will need to be performed twice, because he will grow and change, and they will need a special casts that will need to accommodate his growing body, etc. (For Seinfeld fans, I am reminded of this quote from George Costanza: "So they're flying in special tiny instruments from El Paso") The estimated cost for all of the kitten's needs is about $1500. Donations could be made to the "Misty the Kitten" fund.
So how did that work out, you might wonder? After all, that is a ridiculous amount of money to raise in a short period of time.
But when Misty reached 11 weeks, the campaign had raised $2046 with 12 days left in the campaign.
WHAT!??!
Not to sound bitter, but I can't even get my coworkers to give me $5 for diabetes research. Diabetes, which kills thousands upon thousands of people every year.
But wait, there's more. This happens: Misty the Kitten Dies Post-Surgery.
Super.
Stupid kitten.
Now the woman who created the fund has a bunch of money left over and she wants to use it to support other hopeless sick kitten cases.
So once in a while I read another article about some other hopeless case of a cat that would probably prefer sweet death to another pointless and painful surgery using the LEFTOVER FUNDS from the "Misty the Kitten" fund.
Fine world, have it your way.
Friday, December 7, 2012
Empty
I have noticed that M is balancing her diabetes care pretty well over the last few months.
Don't get me wrong. She still has plenty of bad habits.
She leaves bloody test strips in her meter case. Sharps from her infusion set are frequently left in the open, or on the floor, even.
But there is one thing that she seems to be doing more and more frequently these days, and it concerns me. She is waiting until the last minute to change her infusion set. And by "last minute", I mean that she waits until there is no insulin left in the cartridge.
You see, the insulin pump looks like a pager. In the "pager" part, is a little reservoir cartridge which holds insulin; usually enough for a few days. There is tubing that leads from the pump to the cannula, which is the little straw thing that is inserted under M's skin and distributes the insulin that the pump sends from the reservoir.
"Are you sure that she knows that she is low on insulin?" you might ask.
Oh my, yes!
Pump manufacturers are geniuses, you know. They have all kinds of user error prevention going on in that little device. There is a "low reservoir" alarm which lets M know, through a noisy and rigorous vibrating, that she has a couple of hours of insulin left, and that she had better get all of her medical stuff together so that she won't run out.
Up until recently, when the alarm sounded M would go immediately to the medicine cabinet to get a new infusion set, and go the fridge to get another bottle of insulin.
But friends happen.
The first time I remember M waiting until she had run out of insulin, we ended up staying very late into the night until her blood glucose reading returned to under 200. That night, she knew that she would run out of insulin during a play at her high school, but she didn't want to keep her friends waiting while she changed her infusion set.
Then she ate a Reese's Peanut Butter Cup.
Then chaos ensued.
It was an unplanned, exhausting, and clear lesson in "doing what you have to do when you have to do it."
But only part of the lesson was learned, it seems. After all, she will still choose not to respond to her alarm in a timely fashion.
Now when she does it though, it seems to be more calculated. She figures out how much insulin she will need to get her through the night, and if she thinks it's going to be close, she'll simply go to bed, ignore the infernal buzzing of the pump's alarm system, wake up the next morning with a somewhat high bg reading, and then change her infusion set.
Not recommended, by the way. Those alarms are there for a reason, missy!
Maybe she is trying to save herself time and effort. Maybe she is trying to save our family from higher-than-necessary medical bills. I am not sure what motivates her to wait, but it makes me nervous.
As M is often the child that needs to learn things through experience, we may just have to hope that her calculations and time estimates are always correct.
In the meantime, I will apply the usual dose of nagging.
Don't get me wrong. She still has plenty of bad habits.
She leaves bloody test strips in her meter case. Sharps from her infusion set are frequently left in the open, or on the floor, even.
But there is one thing that she seems to be doing more and more frequently these days, and it concerns me. She is waiting until the last minute to change her infusion set. And by "last minute", I mean that she waits until there is no insulin left in the cartridge.
You see, the insulin pump looks like a pager. In the "pager" part, is a little reservoir cartridge which holds insulin; usually enough for a few days. There is tubing that leads from the pump to the cannula, which is the little straw thing that is inserted under M's skin and distributes the insulin that the pump sends from the reservoir.
"Are you sure that she knows that she is low on insulin?" you might ask.
Oh my, yes!
Pump manufacturers are geniuses, you know. They have all kinds of user error prevention going on in that little device. There is a "low reservoir" alarm which lets M know, through a noisy and rigorous vibrating, that she has a couple of hours of insulin left, and that she had better get all of her medical stuff together so that she won't run out.
Up until recently, when the alarm sounded M would go immediately to the medicine cabinet to get a new infusion set, and go the fridge to get another bottle of insulin.
But friends happen.
The first time I remember M waiting until she had run out of insulin, we ended up staying very late into the night until her blood glucose reading returned to under 200. That night, she knew that she would run out of insulin during a play at her high school, but she didn't want to keep her friends waiting while she changed her infusion set.
Then she ate a Reese's Peanut Butter Cup.
Then chaos ensued.
It was an unplanned, exhausting, and clear lesson in "doing what you have to do when you have to do it."
But only part of the lesson was learned, it seems. After all, she will still choose not to respond to her alarm in a timely fashion.
Now when she does it though, it seems to be more calculated. She figures out how much insulin she will need to get her through the night, and if she thinks it's going to be close, she'll simply go to bed, ignore the infernal buzzing of the pump's alarm system, wake up the next morning with a somewhat high bg reading, and then change her infusion set.
Not recommended, by the way. Those alarms are there for a reason, missy!
Maybe she is trying to save herself time and effort. Maybe she is trying to save our family from higher-than-necessary medical bills. I am not sure what motivates her to wait, but it makes me nervous.
As M is often the child that needs to learn things through experience, we may just have to hope that her calculations and time estimates are always correct.
In the meantime, I will apply the usual dose of nagging.
Thursday, August 23, 2012
The specter
Sometimes I think that, as a D-parent, I face the specter of my child's death every day.
While that's not entirely true, sometimes I am scared. When she has a crazy low blood sugar reading or a blood sugar high that just won't come down, I feel the cold grip of fear grab at my chest, my stomach, and my knees.
In the meantime, I have to act calm, as if I am merely a little tense, and not thinking that I might have to rush my daughter to the hospital to be revived. Or worse.
These moments are usually fleeting, but I hate them. And the expectation that I might have one of these moments is a daily occurrence.
But I still have my daughter. She is alive, and healthy, for the most part. She makes me laugh, and frustrates me nearly every day, just like an ordinary (or extraordinary) teenager. She makes bad choices. She makes good choices. She deals with her diabetes, sometimes with aplomb, sometimes not. But she is here, and I get the chance to see her grow, as long as we are fortunate enough to keep this disease in check.
I am fortunate that I have had three years already that I wouldn't have had with her if she had been born 100 years ago.
But I have seen enough of those God-awful youtube videos about diabetics to know that she could die young. Very young. Especially if we are not careful. Especially if she is not careful.
And I love her.
And it breaks my heart that early death is always an unspoken part of our conversations about diabetes. And sports. And travel. And overnight stays at her friends' houses.
And sometimes it doesn't seem fair.
But then again, neither does this: The other day, my cousin, whom I love very much, suffered the terrible and unthinkable loss.
She lost her son.
Her healthy, young son of whom she was very proud.
At 19 years old, he was killed in a car accident.
The funeral is this weekend.
This is a death that one cannot anticipate. A loss that cannot be predicted. He was not sick. He was not at war. He was driving a car.
And I am at a loss.
How do I comfort someone who is dealing with the very thing that is lingering in my heart every day? My grief for her and her family is overwhelming.
It seems so unfair that a young man with so much potential could simply be plucked from this world.
My cousin is coping with what I truly believe to be every parent's greatest fear. My greatest fear.
And I wish that I could do more for her than pray.
While that's not entirely true, sometimes I am scared. When she has a crazy low blood sugar reading or a blood sugar high that just won't come down, I feel the cold grip of fear grab at my chest, my stomach, and my knees.
In the meantime, I have to act calm, as if I am merely a little tense, and not thinking that I might have to rush my daughter to the hospital to be revived. Or worse.
These moments are usually fleeting, but I hate them. And the expectation that I might have one of these moments is a daily occurrence.
But I still have my daughter. She is alive, and healthy, for the most part. She makes me laugh, and frustrates me nearly every day, just like an ordinary (or extraordinary) teenager. She makes bad choices. She makes good choices. She deals with her diabetes, sometimes with aplomb, sometimes not. But she is here, and I get the chance to see her grow, as long as we are fortunate enough to keep this disease in check.
I am fortunate that I have had three years already that I wouldn't have had with her if she had been born 100 years ago.
But I have seen enough of those God-awful youtube videos about diabetics to know that she could die young. Very young. Especially if we are not careful. Especially if she is not careful.
And I love her.
And it breaks my heart that early death is always an unspoken part of our conversations about diabetes. And sports. And travel. And overnight stays at her friends' houses.
And sometimes it doesn't seem fair.
But then again, neither does this: The other day, my cousin, whom I love very much, suffered the terrible and unthinkable loss.
She lost her son.
Her healthy, young son of whom she was very proud.
At 19 years old, he was killed in a car accident.
The funeral is this weekend.
This is a death that one cannot anticipate. A loss that cannot be predicted. He was not sick. He was not at war. He was driving a car.
And I am at a loss.
How do I comfort someone who is dealing with the very thing that is lingering in my heart every day? My grief for her and her family is overwhelming.
It seems so unfair that a young man with so much potential could simply be plucked from this world.
My cousin is coping with what I truly believe to be every parent's greatest fear. My greatest fear.
And I wish that I could do more for her than pray.
Tuesday, July 24, 2012
Good friends, Bad friends
Along the journey through teenhood, every child likely has to face some decision making regarding her friends. Do I still hang around with that guy who smokes? That girl who is so boy crazy that she'll probably end up pregnant before she's 16?
My reply has always been: If you find them to be valuable, and you are bringing them up, rather letting them bring you down, I will not interfere. After all, we have all made mistakes, and sometimes a good friend helps us to see the better path. Who am I to judge?
Well, now. Let's throw diabetes into the mix, and what constitutes a "good" friend and a "bad" friend changes. A good friend never makes his friend feel like diabetes is a burden to him when hanging out with him. He is curious about the disease and what to do if there is an emergency.
But as I peruse the assortment of friends that M and some of my students have asmassed, I realize that friends can have a strong influence on a teen's desire and ability to manage the disease.
M has a friend who is a lovely young lady. But every time M returns from an overnight excursion at this friend's house, her bg levels are out of whack: usually very high. M says that when she and this friend are together, they are "too busy" for her to check her bg levels or measure her food intake. So she routinely comes home with a bg of 330 or higher.
How does a parent handle a stituation like this? The friend is not encourging M to do anything illegal, immoral, or outwardly dangerous, like hitchhiking. But she is, consciously or not, discouraging her from doing something healthy. After all, not treating yourself for diabetes can be just as dangerous as using ilicit drugs, couldn't it?
So why would a friend of a diabetic NOT encourage her friend to take care of herself? There are, of course myriad reasons: 1) the friend forgets that her companion has diabetes 2) the friend does not know how dangerous diabetes is 3) the friend thinks that squeezing blood out of your finger at the dinner table is "icky" 4) the friend can't deal with the seriousness of the disease 5) the friend is always in a hurry to do the next thing, and the diabetic child does not want to "be a pain".
The fifth answer is a big one. M doesn't want to make a big deal about her diabetes. I believe that she thinks that a night of high bgs is worth a visit to her friend's house. Not good, but understandable.
But then she has other friends, just a few, who stay on top of it, and ask questions about the disease. These friends demystify the disease and are not afraid of it. When M is with these friends, her bg is much closer to her target level when she returns from a visit.
I can't blame the friends themselves. M, after all, is the one who needs to make sure that she is in control of her diabetes. I cannot put that kind of burden on other 15-year-old girls, who are mostly dreaming about the clueless boys in their biology class.
I can't help but wish for a special kind of friend for M: the kind of friend I like to call the diabetes hero friend. It seems to me, however, that it is mostly boys who have this type of friend.
The diabetes hero friend knows what a high blood sugar is, what a low blood sugar is, and frequently has exciting stories that go with that knowledge. I hear stories from these boys about climbing trees to get their delusional-super-high-blood-sugared companions down to the ground and to safety. They have injected their friends with both insulin and glucagon (at different times, obviously) They laugh about their diabetic friends going into diabetic rages while driving the car with a high blood sugar. And they tell the tale of how they took the wheel from their friend and got them to the side of the road without injury.
I once had a diabetes hero friend tell me that if our country ever really wants to win a war, it should put diabetics with high blood glucose levels on the front lines, because they are "crazy angry", and "don't feel pain."
When I tell someone that I have a child with type 1 diabetes, I have real respect for people who say, "I know what you mean, my best friend growing up had diabetes", because that usually means that they have a pretty intimate knowledge of the disease and its consequences. And some wild stories to go with it.
Of course, to have a diabetes hero friend with stories, one must have reasons to be rescued.
Fortunately for M, that has not yet happened.
So, I suppose I will settle for a few friends that ask M if she should eat that, or if she needs to check her bg. Even if she gets tired of hearing it, at least she'll know that they care.
And that they are trying to be good friends.
My reply has always been: If you find them to be valuable, and you are bringing them up, rather letting them bring you down, I will not interfere. After all, we have all made mistakes, and sometimes a good friend helps us to see the better path. Who am I to judge?
Well, now. Let's throw diabetes into the mix, and what constitutes a "good" friend and a "bad" friend changes. A good friend never makes his friend feel like diabetes is a burden to him when hanging out with him. He is curious about the disease and what to do if there is an emergency.
But as I peruse the assortment of friends that M and some of my students have asmassed, I realize that friends can have a strong influence on a teen's desire and ability to manage the disease.
M has a friend who is a lovely young lady. But every time M returns from an overnight excursion at this friend's house, her bg levels are out of whack: usually very high. M says that when she and this friend are together, they are "too busy" for her to check her bg levels or measure her food intake. So she routinely comes home with a bg of 330 or higher.
How does a parent handle a stituation like this? The friend is not encourging M to do anything illegal, immoral, or outwardly dangerous, like hitchhiking. But she is, consciously or not, discouraging her from doing something healthy. After all, not treating yourself for diabetes can be just as dangerous as using ilicit drugs, couldn't it?
So why would a friend of a diabetic NOT encourage her friend to take care of herself? There are, of course myriad reasons: 1) the friend forgets that her companion has diabetes 2) the friend does not know how dangerous diabetes is 3) the friend thinks that squeezing blood out of your finger at the dinner table is "icky" 4) the friend can't deal with the seriousness of the disease 5) the friend is always in a hurry to do the next thing, and the diabetic child does not want to "be a pain".
The fifth answer is a big one. M doesn't want to make a big deal about her diabetes. I believe that she thinks that a night of high bgs is worth a visit to her friend's house. Not good, but understandable.
But then she has other friends, just a few, who stay on top of it, and ask questions about the disease. These friends demystify the disease and are not afraid of it. When M is with these friends, her bg is much closer to her target level when she returns from a visit.
I can't blame the friends themselves. M, after all, is the one who needs to make sure that she is in control of her diabetes. I cannot put that kind of burden on other 15-year-old girls, who are mostly dreaming about the clueless boys in their biology class.
I can't help but wish for a special kind of friend for M: the kind of friend I like to call the diabetes hero friend. It seems to me, however, that it is mostly boys who have this type of friend.
The diabetes hero friend knows what a high blood sugar is, what a low blood sugar is, and frequently has exciting stories that go with that knowledge. I hear stories from these boys about climbing trees to get their delusional-super-high-blood-sugared companions down to the ground and to safety. They have injected their friends with both insulin and glucagon (at different times, obviously) They laugh about their diabetic friends going into diabetic rages while driving the car with a high blood sugar. And they tell the tale of how they took the wheel from their friend and got them to the side of the road without injury.
 |
| Diabetes hero friends know what to do in an emergency! |
I once had a diabetes hero friend tell me that if our country ever really wants to win a war, it should put diabetics with high blood glucose levels on the front lines, because they are "crazy angry", and "don't feel pain."
When I tell someone that I have a child with type 1 diabetes, I have real respect for people who say, "I know what you mean, my best friend growing up had diabetes", because that usually means that they have a pretty intimate knowledge of the disease and its consequences. And some wild stories to go with it.
Of course, to have a diabetes hero friend with stories, one must have reasons to be rescued.
Fortunately for M, that has not yet happened.
So, I suppose I will settle for a few friends that ask M if she should eat that, or if she needs to check her bg. Even if she gets tired of hearing it, at least she'll know that they care.
And that they are trying to be good friends.
 |
| Good friends are worth their weight in insulin. |
Friday, July 13, 2012
Instant gratification, the diabetic version
Still reading Think Like a Pancreas by Gary Scheiner and finding some useful tidbits. The author's style is much more friendly than I am accustomed to reading in the tomes through which I have usually slogged.
One chapter especially caught my eye, as I know that it can be hard for M to understand what the big freaking deal is about maintaining a consistent blood glucose level.
People often recommend that I introduce M to people who have lost feet or vision or kidney function due to diabetes.
The thing is, I know that M already knows the consequences. She knows that this disease, unmanaged, can kill her. But as a teen, it is just one of those other annoying things that can kill you, like walking across the street without looking both ways, or snorting bath salts, or swimming without a lifeguard present.
So how about another approach?
Think Like a Pancreas recommends pointing out what controlled blood sugars can do for you, instead of pointing out that poorly controlled bg can hurt you.
For my lovely M, this "instant gratification" alert might just work, especially because she is an athlete. Below is a list of short term benefits to controlling one's bg levels:
So can M.
Her bg-induced mood swings are notorious, and her ability to focus also varies with her bg levels. I also remember noticing that M's skin looked better immediately after her jaunt to the hospital, where we learned that dry skin is one of the many, many symptoms of diabetes.
I photocopied the page and stuck it to her mirror so she could see it in the mornings. She asked me about it, nodded, and put it in her room.
I can't say that she's been reading it, but her bg levels have been steadier than they had been in a while.
So here's to the power of positive thinking.
One chapter especially caught my eye, as I know that it can be hard for M to understand what the big freaking deal is about maintaining a consistent blood glucose level.
People often recommend that I introduce M to people who have lost feet or vision or kidney function due to diabetes.
The thing is, I know that M already knows the consequences. She knows that this disease, unmanaged, can kill her. But as a teen, it is just one of those other annoying things that can kill you, like walking across the street without looking both ways, or snorting bath salts, or swimming without a lifeguard present.
So how about another approach?
Think Like a Pancreas recommends pointing out what controlled blood sugars can do for you, instead of pointing out that poorly controlled bg can hurt you.
For my lovely M, this "instant gratification" alert might just work, especially because she is an athlete. Below is a list of short term benefits to controlling one's bg levels:
- Enhanced physical performance (better hand-eye coordination for stopping lacrosse balls)
- Enhanced intellectual performance (keep mom off your back about your grades!)
- Enhanced social/coping skills (deal with problems without embarrassing yourself in front of your classmates or the public in general)
- Better sleep (feel rested in the morning)
- Fewer infections (and colds!)
- Healthier skin (No acne or dry, flaky skin: includes dry scalp issues)
So can M.
Her bg-induced mood swings are notorious, and her ability to focus also varies with her bg levels. I also remember noticing that M's skin looked better immediately after her jaunt to the hospital, where we learned that dry skin is one of the many, many symptoms of diabetes.
I photocopied the page and stuck it to her mirror so she could see it in the mornings. She asked me about it, nodded, and put it in her room.
I can't say that she's been reading it, but her bg levels have been steadier than they had been in a while.
So here's to the power of positive thinking.
Tuesday, May 15, 2012
Diabetes Blog Week
As I continue this journey with my unwelcome guest, diabetes, I learn new stuff all the time.
November is diabetes awareness month.
The American Diabetes Association and the Juvenile Diabetes Research Foundation are both good organizations with differing philosophies.
Some DNEs don't like it when you read or ask questions.
And this week is Diabetes Blog Week. This is the time of year when we are supposed to look around, find blogs that we like and share them.
So here we go.
My favorite diabetes blog is the first one I found. I was desperately looking for coping strategies, when I found Six Until Me by Kerri Sparling. At the time she was pregnant and discussing the trials and tribulations of her diabetic pregnancy, which at times made me weep. She has a nice, light style, and she evidently blogs for a living.
The next blog that I bookmarked was Typical Type 1 by Jacquie Paul Wojcik. She reminds me of what a grown-up M might be like. She drinks beer. She leaves her nasty test strips lying around. She is witty and insightful about the reactions of others to Type 1.
The only other diabetes blog I have on my bookmark sheet is Death of a Pancreas by Joanne, a Canadian immigrant who now lives in Texas. Her daughter is much younger than M, and even though we have never had a direct conversation, she and I do check out each other's blogs. She to look a little into the future, and I to remember that I am not the only insane diabetes momma out there. I discovered Joanne's blog when Kerri posted the video "What NOT to say to the parent of a Type 1 diabetic", which is hilarious if you run in diabetic circles.
I tried to get M to blog about her experiences. I thought other kids might benefit from her discoveries as a diabetic. She gave it a shot. I think she posted about 6 or seven one paragraph posts. But I realized that I wanted her to do it more than she wanted to do it.
Then I realized that I wanted to do it.
So here we are, nearly two years and 98 posts later, still babbling about the diabetic experience from a parental point of view.
I am always giddily pleased when I run into someone and they say that they have read my blog. So to those of you who have been reading it: Thanks! Even if one reader out there has learned more about diabetes, then we are one person closer to dispelling the myths and making life easier for other diabetics. And I appreciate that.
November is diabetes awareness month.
The American Diabetes Association and the Juvenile Diabetes Research Foundation are both good organizations with differing philosophies.
Some DNEs don't like it when you read or ask questions.
And this week is Diabetes Blog Week. This is the time of year when we are supposed to look around, find blogs that we like and share them.
So here we go.
My favorite diabetes blog is the first one I found. I was desperately looking for coping strategies, when I found Six Until Me by Kerri Sparling. At the time she was pregnant and discussing the trials and tribulations of her diabetic pregnancy, which at times made me weep. She has a nice, light style, and she evidently blogs for a living.
The next blog that I bookmarked was Typical Type 1 by Jacquie Paul Wojcik. She reminds me of what a grown-up M might be like. She drinks beer. She leaves her nasty test strips lying around. She is witty and insightful about the reactions of others to Type 1.
The only other diabetes blog I have on my bookmark sheet is Death of a Pancreas by Joanne, a Canadian immigrant who now lives in Texas. Her daughter is much younger than M, and even though we have never had a direct conversation, she and I do check out each other's blogs. She to look a little into the future, and I to remember that I am not the only insane diabetes momma out there. I discovered Joanne's blog when Kerri posted the video "What NOT to say to the parent of a Type 1 diabetic", which is hilarious if you run in diabetic circles.
I tried to get M to blog about her experiences. I thought other kids might benefit from her discoveries as a diabetic. She gave it a shot. I think she posted about 6 or seven one paragraph posts. But I realized that I wanted her to do it more than she wanted to do it.
Then I realized that I wanted to do it.
So here we are, nearly two years and 98 posts later, still babbling about the diabetic experience from a parental point of view.
I am always giddily pleased when I run into someone and they say that they have read my blog. So to those of you who have been reading it: Thanks! Even if one reader out there has learned more about diabetes, then we are one person closer to dispelling the myths and making life easier for other diabetics. And I appreciate that.
 | |
| Keep reading, my friends! |
Tuesday, May 8, 2012
Ups, Downs, and Opinions
Shortly after M switched to Novolog, she also began lacrosse season, which usually requires a couple of weeks of adjustment.
I am pretty sure that the timing could not have been worse.
Having two major changes in lifestyle make the diabetic body, let's just say, unpredictable.
Her blood sugar was a mess. 32! 595! 31! 536! AHHHHHH!
This change and unpredictability sparked a lot of debate and discussion among those of us who were responsible for M's care.
First it was the DNE, who told me that "insulin is insulin", and that any change that was occurring must have to do with her renewed exercise levels. I disagreed, knowing that we have made this change before, and it was never quite this erratic. I did wonder if maybe M was eating food that I didn't know about, but she assured me that she was not.
Then the school nurse decided to chime in. "You need to get that insulin changed back! Ask the insurance company to change it! They will make an exception if there is a reaction that is detrimental to her health!"
The athletic trainer agreed. "It was not this bad before! It must be the insulin!"
I found these forceful declarations unfair.
I was exhausted. I was checking M's bg levels every two hours around the clock. I was stressed. I was tired. I actually became weepy a work. My coworker suggested that I take a mental health day after she asked me how M was doing, and I welled up at the thought of my daughter and her unpredictable results. I wondered daily which child I would be coming home to: the pasty gray-faced child, or the insane cranky child who felt defensive about her test results.
My diabetic students told me to hang in there; that I was doing the right thing. Monitoring bg levels regularly would give me the information that I needed.
M and I decided to give it a month. After two weeks of bi-hourly monitoring, we adjusted her basal rate rather aggressively, up in some places, down in others.
Happily, after about 4 weeks, we are back within our "normal" range.
But let me tell you, having everyone give me, a strung out parent, different advice just about sent me over the edge. I understood each point of view, and they all reflected my own guesses as to what was going on. I felt defensive any time someone felt that they could give me an absolute answer.
There are no absolute answers, no matter who thinks that just one thing will make a person's body go from insane to normal.
I knew in my gut that it had to be a combination of factors.
And while that reasoning and very careful monitoring paid off, I still feel that it would be inappropriate to tell people that they were only partially right.
Saying, "I am smarter than you are," just seems a little rude.
I am pretty sure that the timing could not have been worse.
Having two major changes in lifestyle make the diabetic body, let's just say, unpredictable.
Her blood sugar was a mess. 32! 595! 31! 536! AHHHHHH!
This change and unpredictability sparked a lot of debate and discussion among those of us who were responsible for M's care.
First it was the DNE, who told me that "insulin is insulin", and that any change that was occurring must have to do with her renewed exercise levels. I disagreed, knowing that we have made this change before, and it was never quite this erratic. I did wonder if maybe M was eating food that I didn't know about, but she assured me that she was not.
Then the school nurse decided to chime in. "You need to get that insulin changed back! Ask the insurance company to change it! They will make an exception if there is a reaction that is detrimental to her health!"
The athletic trainer agreed. "It was not this bad before! It must be the insulin!"
I found these forceful declarations unfair.
I was exhausted. I was checking M's bg levels every two hours around the clock. I was stressed. I was tired. I actually became weepy a work. My coworker suggested that I take a mental health day after she asked me how M was doing, and I welled up at the thought of my daughter and her unpredictable results. I wondered daily which child I would be coming home to: the pasty gray-faced child, or the insane cranky child who felt defensive about her test results.
My diabetic students told me to hang in there; that I was doing the right thing. Monitoring bg levels regularly would give me the information that I needed.
M and I decided to give it a month. After two weeks of bi-hourly monitoring, we adjusted her basal rate rather aggressively, up in some places, down in others.
Happily, after about 4 weeks, we are back within our "normal" range.
But let me tell you, having everyone give me, a strung out parent, different advice just about sent me over the edge. I understood each point of view, and they all reflected my own guesses as to what was going on. I felt defensive any time someone felt that they could give me an absolute answer.
There are no absolute answers, no matter who thinks that just one thing will make a person's body go from insane to normal.
I knew in my gut that it had to be a combination of factors.
And while that reasoning and very careful monitoring paid off, I still feel that it would be inappropriate to tell people that they were only partially right.
Saying, "I am smarter than you are," just seems a little rude.
 |
| I may even be smarter than this car! |
Monday, April 30, 2012
Left out
It happens.
I try to understand that it happens.
I tell myself that I would rather have a person tell me that they are not ready for the responsibility of watching my daughter during a sleepover party, or on a trip to the beach. I tell myself that if they are not able to deal with my daughter having Type 1 diabetes, then I do not want them to be in charge of her care in a situation when I might be out of contact for even a few minutes.
But it hurts.
It hurts me to even ask them.
And even though I understand it, it upsets me that some people are unwilling to take the risk.
She has not been hospitalized, lost consciousness, or flipped out since she was diagnosed. She knows to call me when her bg hits certain levels, just so that I can be part of her action plan for the day. And realistically, she can handle it all herself for a few hours. Odds are, nothing will go wrong.
But you never know.
If she loses consciousness, if she grows unreasonably angry, and the person in charge doesn't know what to do, it's a problem.
M's bg levels had been crazy. All over the place crazy. 595! 33! 578! 41! It didn't stop for days!
And when we finally had two days of it more or less under control, M was to go to a friend's house overnight and then join the family at Anime Boston to honor her friend's birthday.
The plans had been in place for weeks.
M was the only person that her friend invited.
Everyone wanted M to be able to go: M, her friend, me, the friend's mother.
This friend's mother is fantastic. She has traditionally been unafraid to take M for days at a time. But this was unusual. M's bg has only been back under control for a day or two.
I knew I had to make the call, and I hated it.
I explained the situation to the mom. She listened carefully, and asked several good questions.
I told her how much I hated asking her to take M under these circumstances, but I thought it was only fair that she fully understand what she was getting into.
After a few more questions, the mom stated that she would take M. She asked for contact numbers for the entire time she had M, as well as permission to treat letter in case of an emergency. Then she told me that the girls would refrain from the birthday cupcakes that she had planned to share.
I started to protest that M shouldn't be any more of a burden to her than necessary. She said, "No. It is not all right for my daughters to pig out in front of M when she can't enjoy it. We will save the cupcakes for later."
I have a friend who once told me that I can juggle a million things, and I am always in control: until my kids are sick. It unnerves me.
So, at this point I snapped: not in a bad way, but I could feel tears of relief stinging my eyes. My voice was trembling as I thanked her for her kindness, and told her how much I appreciated that she was willing to accommodate my daughter.
And I really did.
I try to understand that it happens.
I tell myself that I would rather have a person tell me that they are not ready for the responsibility of watching my daughter during a sleepover party, or on a trip to the beach. I tell myself that if they are not able to deal with my daughter having Type 1 diabetes, then I do not want them to be in charge of her care in a situation when I might be out of contact for even a few minutes.
But it hurts.
It hurts me to even ask them.
And even though I understand it, it upsets me that some people are unwilling to take the risk.
She has not been hospitalized, lost consciousness, or flipped out since she was diagnosed. She knows to call me when her bg hits certain levels, just so that I can be part of her action plan for the day. And realistically, she can handle it all herself for a few hours. Odds are, nothing will go wrong.
But you never know.
If she loses consciousness, if she grows unreasonably angry, and the person in charge doesn't know what to do, it's a problem.
M's bg levels had been crazy. All over the place crazy. 595! 33! 578! 41! It didn't stop for days!
And when we finally had two days of it more or less under control, M was to go to a friend's house overnight and then join the family at Anime Boston to honor her friend's birthday.
The plans had been in place for weeks.
M was the only person that her friend invited.
Everyone wanted M to be able to go: M, her friend, me, the friend's mother.
This friend's mother is fantastic. She has traditionally been unafraid to take M for days at a time. But this was unusual. M's bg has only been back under control for a day or two.
I knew I had to make the call, and I hated it.
I explained the situation to the mom. She listened carefully, and asked several good questions.
I told her how much I hated asking her to take M under these circumstances, but I thought it was only fair that she fully understand what she was getting into.
After a few more questions, the mom stated that she would take M. She asked for contact numbers for the entire time she had M, as well as permission to treat letter in case of an emergency. Then she told me that the girls would refrain from the birthday cupcakes that she had planned to share.
I started to protest that M shouldn't be any more of a burden to her than necessary. She said, "No. It is not all right for my daughters to pig out in front of M when she can't enjoy it. We will save the cupcakes for later."
I have a friend who once told me that I can juggle a million things, and I am always in control: until my kids are sick. It unnerves me.
So, at this point I snapped: not in a bad way, but I could feel tears of relief stinging my eyes. My voice was trembling as I thanked her for her kindness, and told her how much I appreciated that she was willing to accommodate my daughter.
And I really did.
 |
| Anime peeps. Long story short, a good time was had by all. |
Thursday, April 26, 2012
No choice
So a few weeks ago I receive a letter from our insurance company.
It states that my daughter is on a medication that is "no longer a preferred medication". And I think to myself, "Really. The only medication that she uses is insulin. Did you have an alternative for insulin you HMO bastard pieces of shit?" (We actually have a PPO, but I just love that quote.)
Upon further investigation, it seems that Caremark has decided that it no longer wants to work with Humalog (from the Eli Lily company in Indiana), and prefers to work with Novolog (from Novo Nordisk, a company in Denmark). They stated in their letter that failure to switch to the preferred medication may result in loss of coverage for the current medication.
This makes me nervous.
Why? Because the one student I know for sure uses this stuff has very wild swings in blood sugar during the day. His mother and I spoke about different kinds of insulins at a school event. She was touting Novolog as better because it works faster, more like natural insulin.
I thought that maybe we would try it, eventually. Maybe it would work more effectively with M's lifestyle, but we would wait to do it over the summer, if we did try it, so that we could monitor the effects of the change on her system without too much life getting in the way.
But the insurance company threw off my time line.
I asked another diabetic student about which insulin she used. She said that she uses Humalog, and that she had tried Novolog, but after trying it, her doctor wrote her a letter stating that she needed to switch back for medical reasons.
What were the medical reasons?
She wears her pump very discreetly, snaking the tubing from a pocket in her jeans to the infusion set on her thigh. While using Novolog, she said that she was developing divots on her thighs at the infusion site. Her doctor noticed that her muscles were withering where the Novolog entered her system, and successfully appealed the insurance company mandate.
I was a little alarmed.
I brought my concerns to our DNE, who immediately poo-pooed the idea. She had never heard of any of the problems to which I was referring. She told us that "There is no difference between the insulins, and anyone who tells you otherwise is blowing smoke."
After careful consideration, we chose to give Novolog a try without appealing the decisions of the insurance company. We hope that all will go well, and that we won't have to fight for an appeal in the future.
With lacrosse season starting up, I am hopeful that this new medication will interact with M and her lifestyle smoothly.
But I know better.
No adjustment is simple in D-world.
I will be sharpening my swords for battle, just in case.
It states that my daughter is on a medication that is "no longer a preferred medication". And I think to myself, "Really. The only medication that she uses is insulin. Did you have an alternative for insulin you HMO bastard pieces of shit?" (We actually have a PPO, but I just love that quote.)
Upon further investigation, it seems that Caremark has decided that it no longer wants to work with Humalog (from the Eli Lily company in Indiana), and prefers to work with Novolog (from Novo Nordisk, a company in Denmark). They stated in their letter that failure to switch to the preferred medication may result in loss of coverage for the current medication.
This makes me nervous.
Why? Because the one student I know for sure uses this stuff has very wild swings in blood sugar during the day. His mother and I spoke about different kinds of insulins at a school event. She was touting Novolog as better because it works faster, more like natural insulin.
I thought that maybe we would try it, eventually. Maybe it would work more effectively with M's lifestyle, but we would wait to do it over the summer, if we did try it, so that we could monitor the effects of the change on her system without too much life getting in the way.
But the insurance company threw off my time line.
I asked another diabetic student about which insulin she used. She said that she uses Humalog, and that she had tried Novolog, but after trying it, her doctor wrote her a letter stating that she needed to switch back for medical reasons.
What were the medical reasons?
She wears her pump very discreetly, snaking the tubing from a pocket in her jeans to the infusion set on her thigh. While using Novolog, she said that she was developing divots on her thighs at the infusion site. Her doctor noticed that her muscles were withering where the Novolog entered her system, and successfully appealed the insurance company mandate.
I was a little alarmed.
I brought my concerns to our DNE, who immediately poo-pooed the idea. She had never heard of any of the problems to which I was referring. She told us that "There is no difference between the insulins, and anyone who tells you otherwise is blowing smoke."
After careful consideration, we chose to give Novolog a try without appealing the decisions of the insurance company. We hope that all will go well, and that we won't have to fight for an appeal in the future.
With lacrosse season starting up, I am hopeful that this new medication will interact with M and her lifestyle smoothly.
But I know better.
No adjustment is simple in D-world.
I will be sharpening my swords for battle, just in case.
 |
| Please don't make me use this. |
Thursday, March 29, 2012
Story Time Success
I may have mentioned once or twice that I teach high school.
I love this job.
Kids keep you on your toes, and normal adults are so boringly well-behaved.
I have a Spanish 1 class late in the day. This week we were learning "la mochila" (the backpack). In preparation for the lesson, I had packed one of M's backpacks with some typical and not so typical items that one might find in a high-schooler's backpack: el lápiz, el bolígrafo, el cuaderno, la carpeta, etc. The kids would guess what was in the backpack in English, and I would look inside to see if the item was in there. If it was, I would remove it, set it on the marker tray (what used to be a chalk tray), and label it.
Included in my backpack was ¨el libro¨ . When a student guessed that there might be a book in my backpack, I reached in and pulled out the book I am currently carrying around: Think like a Pancreas.
One of my students could probably have moved on to Spanish 2, but was a little shaky and ended up taking Spanish 1. He does a lot of doodling in his notebook as a result. At the end of class, he handed me a story that he wrote when he should have been copying the vocabulary into his notebook.
I love this job.
Kids keep you on your toes, and normal adults are so boringly well-behaved.
I have a Spanish 1 class late in the day. This week we were learning "la mochila" (the backpack). In preparation for the lesson, I had packed one of M's backpacks with some typical and not so typical items that one might find in a high-schooler's backpack: el lápiz, el bolígrafo, el cuaderno, la carpeta, etc. The kids would guess what was in the backpack in English, and I would look inside to see if the item was in there. If it was, I would remove it, set it on the marker tray (what used to be a chalk tray), and label it.
Included in my backpack was ¨el libro¨ . When a student guessed that there might be a book in my backpack, I reached in and pulled out the book I am currently carrying around: Think like a Pancreas.
One of my students could probably have moved on to Spanish 2, but was a little shaky and ended up taking Spanish 1. He does a lot of doodling in his notebook as a result. At the end of class, he handed me a story that he wrote when he should have been copying the vocabulary into his notebook.
The Pancreas That Wanted To
Once upon a time there was a little girl. Her name was Victoriabby-Devon-Charlie-the great. But they called her Devon for short. She had diabetes. She was very sick from it, and all of a sudden the pancreas didn't work. So she has to take insulin, because her pancreas couldn't. Devon went to the doctors and the doctor said "your pancreas is being silly" to her. All of a sudden her pancreas woke up, like sleeping beauty. It didn't like being called silly, so it wanted to produce insulin but couldn't. When Devon went to the drs. to get more insulin, but her pancreas only wanted its own type of insulin, so it tried and tried, and some just came out! The insulin from the doctors mixed with the real insulin from the pancreas, and the mixture caused a reaction, and the reaction got rid of diabetes forever. Then, Victoriabby-Devon-Charly-the-great lived happily ever after.
THE END
I promise you that this is exactly what he wrote. I had to work very hard not to edit it.
All of my students know that M has diabetes. I try to give the kids a rudimentary understanding of what it means to have diabetes. When I read this unassigned piece of written literature, I thought that it showed some tiny level of success.
Not because this fourteen-year-old could construct flawless sentences, and not because he got all of his facts straight.
I felt success because he knew what a pancreas was. He knew what insulin was. And he understands the dream of a diabetic is for a quick cure.
Now if only M's pancreas would grow tired of being called silly. THEN we might see some results!
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