How to put the brakes on for someone else on the same road?

[jbeany]

One of my good friends came to visit this weekend. I live over 4 hours away from my friend.  She and her 16 year old daughter and her daughter's best friend, Bee came down to school shop, since there are few malls or shopping centers in the rural area they live in.  I'm minutes away from 3 different major shopping areas, so a visit always means a trip to at least one mega mall. 

Bee is a juvenile diabetic and has been since age 7.  I was diagnosed at 13. 

My own mother couldn't cope, so I was left to deal with it pretty much by myself - with the result that I did the bare minimum for my health until I got old enough to realize it was serious.  In my case, that was about 20.  7 years of damage was too much, and my kidneys were already past help, and down to 25% function by the time I was 27.

I don't know how Bee's parent's are with her, but if they are figuring she's got it covered, they are very, very wrong.  She's on the same combo of drugs I was put on when I finally woke up and started working on getting better treatment.  It's called "the poor man's pump."  It involves taking one long-acting insulin at night, to cover the natural morning blood sugar high, and regular boluses all day long of a short acting insulin.  The short acting insulin dose is calculated by an individualized formula that figures out how much insulin you need to account for every carb you plan to eat.  You estimate the carbs in your meal, take the right amount of insulin, and you have the freedom to eat what you want, instead of being on a restrictive diet.  When you go out to eat, of course, it's always a guess on carbs.  What you are supposed to do is check your sugar regularly - every morning, before every meal, and before bed.  If you didn't estimate the carbs right on your last meal, you just calculate how much extra insulin you need to bring back down.  Done right, you can get near-perfect control.

Done the way Bee is doing it - it's a disaster.  They arrived last night at almost 9 pm, having left after everyone was done with work and doctor's appointments - my friend's daughter has a summer job, Bee had an appointment that ran late.  To shorten the travel time, Bee's little sister packed her bags for her, and my friend picked it up and got her directly from a doctor's appointment.  They stopped for dinner about an hour into the drive.  When they got here, the girls immediately raided my fridge and dove into the goodies I'd prepared.

At 11 pm, Bee decided she should take her fast-acting insulin.  Oh, yeah, that stuff you are supposed to take BEFORE you eat anything?  Like dinner on the road?  She didn't have any packed.  Her sister had taken it out of the fridge, went and packed the syringes, and left it on the counter instead of putting it in the bag.  Because Bee didn't bother to take any before dinner at 6 or before the snack attack at 9, she never realized it wasn't in her bag.  Of course, if she's been following her treatment, they would have known it wasn't packed when they were only an hour from home.....or at least while we could still reach her parents easily.

Good grief.  Okay, first thing I asked was "What's your sugar now?"  She didn't have a tester either.  She hadn't asked her sister to pack one, and she didn't have one in her purse.  Apparently, she had some insulin in the car when her mom took her to the doctor, but she left it in the car when she was picked up.  She never bothers to carry a tester.   

Well, I still check mine, pancreas transplant or not.  Her sugar was so high, that's all my meter registered.  "HI" means it's over 600.  It's supposed to be about 100.  By the time you hit 800, you might be comatose.  Oh, good.  And we're not her parents, and her parents are unreachable - on an all-night motorcycle road trip to heaven knows where up north.

Okay, panic helps no one, although she's NOW doing plenty of it.  Who is your doctor?  It's Friday night, but there might be a 24 hour emergency line.  There are 24 hour pharmacies close to me.
She's 16 - and doesn't know the name of her doctors or which hospitals or offices they are in!  I finally manage to figure out the location where she goes to see her pediatrician up north, pull up the list of docs at the office, and she recognizes a name.  We find the 24 hour number online, call, and eventually get a callback from a nurse, who tells us that she can't do a thing except tell us to take her to the ER.  Peachy.  We're still on the phone with the nurse when her parents finally got the frantic messages.  They know the name of the docs who actually treat her diabetes - and it's at a major medical center less than 2 miles from my place.  What!?  She's 16, and she doesn't even know that she's in the same city as her doctors?  Oh for pete's sake.  The pediatrician's nurse has managed to confirm that the family uses Walgreen's, and I've looked up the closest 24 hour Walgreen's pharmacy - which is happily less than 2 miles from my house.  This is good, because the only copies of her insurance cards we have are pictures on an iphone, sent from her dad.  Her dad gets the 24 line to the local docs, they call in a scrip, and we had it shortly after that. Walgreen's accepted the phone pics as proof of insurance - sooooo helpful!

The rest of the weekend went a bit smoother.  Her sugar bottomed out about 6 am, but that's to be expected after the mess.  She still had to be reminded to take her long acting insulin that night, and she got it really late.  Well, no surprise her sugar was still screwy the next day.  She came scurrying up to us while we were at one of the strip malls - her sugar was bottoming out again.  Well, guess what - she doesn't ever carry any candy or glucose tablets with her either.    

I know she's 16, and I know it's hard to realize that this is serious at that age - I certainly didn't do well at it.  I was frustrated all weekend though, because I see her sliding down the same crappy path to dialysis I took, and I want to put on the brakes for her.  I did talk about dialysis and my transplant and all the miserable complications I had, but I can see that it made little impression.  I had to try though.  I remember lots of lectures from my docs about my lack of effort to control my own sugar at that age - but no one EVER explained the real consequences.  Oh, sure, they always said "You could die!"  Well, yeah, but as a teen, that doesn't really register.  We all think we're immortal at that age, don't we?  And being told "You could die before you're 50," as someone told me at 13, seemed like a joke.  At 13, 50 is really, really, really old!  Who cares if you die by then?  No one ever said, "Here's what kidney failure looks like.   Here's what a fistula scar looks like.  Here's the dialysis diet.  Here's how you're going to feel, and it could last for years and years and years."

Well, I tried.  All I can do now is hope some of it sinks in.

[Rerun]

Bless your heart JB.  Your friend heard all this too and may try and help the girl at home.  You may have saved this girl from dialysis you never know. 

         

[jeannea]

You have an apportunity to help. Is there a way to develop a relationship with her so she trusts you? Take her shopping or for a movie or whatever. Then maybe she'll start to listen. Good for you for trying. It must be hard to watch someone else go through it.

[willowtreewren]

Geeze! I can tell how frustrating this was for you! (And scary!!!)

I wish there were some way to REALLY get through to teenagers about how important their health care it. Sigh....

Aleta

[Lillupie]

Wow I really hope she wakes up soon. People like that make me want to go back to writing my book.

I know a girl on dialysis (not diabetic) who quit coming to clinic, and who never took her binders. She started dialysis at 8 and was stll on at age 22. She just didnt care.

Lisa

[jbeany]

You have an apportunity to help. Is there a way to develop a relationship with her so she trusts you? Take her shopping or for a movie or whatever. Then maybe she'll start to listen. Good for you for trying. It must be hard to watch someone else go through it.

My only real opportunity was this weekend - I don't know her or her parents at all, and they live too far away for it to be practical to start some kind of Big Sister relationship.  I think if I made any impression, it was on my friend's daughter, not Bee.  Although, that may be enough to make a difference.  Peer pressure can be stronger than anything you hear from an adult at that age.

I do know that my friend is now better prepared for when Bee is with her, though.  I've explained what the blood testing results are supposed to be like - and she at least now knows to make sure Bee is checking her sugar and taking insulin before eating anything.

[gothiclovemonkey]

i know how frustrating this is! I seem to be constantly telling people, hey, thats not good, dont let this or that slide because it could wind u up where i am. and it falls on deaf ears.

[shutterbug05]

Unfortunately most people have to experience it to understand, and of course by then it is usually too late.  I hope the friend really took this to heart and can get through to her, even if it takes peer pressure to do it.  I don't usually like peer pressure, but in this case I can look the other way.  I would not wish this lifestyle on my worst enemy.   I don't think that there is anyone I dislike/hate that much.

[fearless]

I've been thinking about this sort of thing a lot lately.  I really wish there were more public education services about kidney failure, because so much pain could be prevented.  Whne I was a kid i remember being shown pictures of lungs that had been removed from people who died of cancer from smoking cigarettes.  It made quite an impression on me.  i still tried cigarettes a few times when i was a little older, but i never started smoking for real.  I just couldn't get the idea of rotting lungs out of my mind.  If young people could be shown people who've lost limbs due to diabetes, and spend even a few minutes in an ugly dialysis clinic like the one I visit, and see the big needles in people's disfigured arms and legs, and the blood pumping through the machines, maybe they would wake up to the consequences of what they're doing,.  i have a sister with high blood pressure.  She actually gets angry at me when i try to talk to her about it!  It's like she really doesn't think that my experiences on dialysis are such a big deal.  It's insulting.  I tell her: if you don't do something about your blood pressure you'll end up on dialysis.  She just says "I'm not going to need dialysis"  What do I do?  It makes me sick at heart to think she may end up on dialysis.  I don't know what to do to get her to pay attention and take care of herself.

[Chris]

OIY!
 
Her parent's need to wise up also. See,s like they do not know this goes on, haven't been to any diabetes classes, ect. They need to take an active roll. I would have hoped things would have changed by now since I was 7 33 years ago, but apparently not. She is going to be in the same boat we are in jbeany or even worse. I don't think a pump would be in her best interest if she doesn't take better control of herself. We have the technology to take better control of diabetes these days except lessons learned from the past has not helped better educate newer diabetics.
 
In the old days we just had urine test to judge our sugars by color, no sliding scale, faster acting insulin, better needles and later lancets and lancet devices.
 
Sorry to say, but the road to complications started awhile back and will surface. Which one is anyones guess.

[Rain]

I know how frustrated you must be.  My mother hast type 1 diabetes since she was7.  She never took care of herself, eat what she wanted etc.  Now in her 50's is blind in 1 eye, double leg amputee on dialysis for the last 11 years.  and now because she doesn't follow the renal diet, she always has to go for extra treatment due to high potassium and fluid overload. She also is now on oxygen for lung damage due to fluid overload. 

My cousin whio is now 30 is following the same path.  He doesn't always check is sugars or take his insulin right.  He also go outs partying all the time and drinks like fish.  My mom tried talking to him but he didn't listen. 

My mom has given up now, and there is nothing I can do about it.  If only she spent as much time taking care of herself has she did to me when I had to follow the low potassium diet since I was 7 years old.   It's not like she doesn't know how to follow a renal diet since they did when I was a kid, but she chooses not too. 

[okarol]

They say some people learn the hard. But in this case the cost is huge. 

[AnnieB]

I agree that it's difficult to impress upon teenagers how serious this sort of thing is. I wonder if there's another element here - teens really hate being different from their peers. She may be in denial about being diabetic because she wants to fit in. Do you think that might be the case?
 

Anne

[jbeany]

Having been a diabetic teen - yes, of course!

[Chris]

For me it first was not being taught except how to do the urine sugar test, then there was not knowing another diabetic when I was growing up. Maybe if I knew another diabetics who were going thru similar problems may have benefitted.

[Whamo]

Most people don't listen.  I have a lot of friends that are obese and diabetic.  Warnings just go in one ear and out the other. 

[AnnieB]

It can be very difficult to change your lifestyle & habits, even when you realize they're unhealthy. I must have lost and gained the same 40 pounds a dozen times....

Anne