Once upon a time(at the beginning of fall semester '09), I informed the instructor of my insulin pump.I did this,so there would never be the slightest hint that I might be cheating(looking at it,during exams) . He took it in stride,saying that was ok.
Now,many moons later,we're nearing the end of the 2nd semester and the long-awaited endocrine system.(well,long awaited by me) I've wondered all semester if he'll get it right.And I've just ached for the moment where the roles are reversed and I'm not the dumbest student in the class.That moment is still weeks away...but today,I was asked if I'd like to do a short presentation on the pump & I said yes.PWD comes out of the closet(both scary & exilerating,I mean,I do not broadcast diabetes at all) It's a chance to educate my classmates about it.Diabetes hasn't come up in casual conversations with my classmates,ever, and no one notices that little green elecronic device clipped on my waistband,so I'm sure the shock factor will be a 10.0 on the Ricktor Scale. I wasn't really expecting he'd ask me to do this(I'm not exactly the A type student),but I sure am looking forward to doing it. It's a good feeling,when you can educate impressionable young minds prior to their getting bad info from somewhere else.
This week and next,it's off to California for Easter...and a mini-vac.The books come with me too,I have yet another exam 4 days after getting back,fortuantly it's on the digestive system & I know alot about that.Skipping 2 classes won't be the end of the world.I really hope to meet some more D-bloggers when I'm out there,but again,they may not want to meet me so I guess we'll just see. We plan to do some sightseeing while we're out there,its not just a quick visit family deal. Hopefully,it'll be warm enough to hit up the beach too.
- Posted using BlogPress from my iPhone
Wednesday, March 31, 2010
Tuesday, March 30, 2010
The Audacity of Hope
(This is not a plug for our 44th President's book.)
Several nights ago,(on Twitter) I and several other D-friends were engaging a (parent of a newly dx'd child) in conversation.
I know what it is to be in honeymoon and hope your diabetes will just go away. And as a parent, I'm sure those feelings must be multiplied by 1000. You want only the best for your child,you don't want diabetes to be a permanant thing in your child's life. You want the doctors to be wrong, you want to be the one in a million, it was all just a fluke and it will go away soon. For most people, the reality slowly sets in...the honeymoon ends,you realize that diabetes is here to stay. But for some people,they cannot accept it...and there must be a way to make them better. God would not allow such a travesty in their lives. These are the red flag individuals that often end up in the newspaper on manslaughter related charges,after attempting to wean their child off insulin. So, yes, when someone starts making statements that their child will be cured...and quoting a inaccurate cure-all testimonial..its a tad concerning. You can only hope they won't. This person seemed to be responsible...and in communication with their child's healthcare team,and adamant that they wouldn't stop insulin without the dr's permission.(but who knows..if they believe something strongly enough, of course they're going to act on it)
I'm not sure I (or anyone else) got through to them..when someone is very convinced of something,(make that religiously convinced) it may feel like everyone else is the enemy,and out to ruin their faith. Add to that, that they are convinced they see miracles happening every night(physical ones) and one starts to wonder if they have the ability to distinguish between reality/snake oil medicine at all. At one point(in my singlehood), I went out with one of them.(thankfully it never got to the point of his trying to cure my diabetes)
Hope is a powerful drug,and we all wish for a cure, but the reality is, there has never been anyone supermiracuously cured.(of either type 1, or type 2) And unfortunately, when one charges out ahead, intent on curing the diabetes,the person with diabetes soon ends up quite ill,or dead. I think hope, diabetes,and God can peacefully coexist,I believe God gave us the tools to take care of ourselves(and have a life expectancy far beyond what it was in 1921.) One can pick any verse out of the Bible,& quote it till they're blue in the face...and beyond making themselves appear seriously ignorant of how God actually interacts with the real world,its just like talking to a brick wall. They don't consider any other alternatives,having a debate isn't really possible from either perspective.(medical facts, or theology)So they go back to their favorite verse and cling to that. I am not bashing Christians,(I am one)but its like an EMT walking into an operating room and doing quadruple bypass surgery.(they have no clue what they're really saying,just like an EMT would not do surgery correctly)Their doctor needs to stay involved(very heavily involved),and have CPS out there the moment something seems remotely fishy. Denial is one thing, but a child's life is quite another. You never really know what someone will do.
Several nights ago,(on Twitter) I and several other D-friends were engaging a (parent of a newly dx'd child) in conversation.
I know what it is to be in honeymoon and hope your diabetes will just go away. And as a parent, I'm sure those feelings must be multiplied by 1000. You want only the best for your child,you don't want diabetes to be a permanant thing in your child's life. You want the doctors to be wrong, you want to be the one in a million, it was all just a fluke and it will go away soon. For most people, the reality slowly sets in...the honeymoon ends,you realize that diabetes is here to stay. But for some people,they cannot accept it...and there must be a way to make them better. God would not allow such a travesty in their lives. These are the red flag individuals that often end up in the newspaper on manslaughter related charges,after attempting to wean their child off insulin. So, yes, when someone starts making statements that their child will be cured...and quoting a inaccurate cure-all testimonial..its a tad concerning. You can only hope they won't. This person seemed to be responsible...and in communication with their child's healthcare team,and adamant that they wouldn't stop insulin without the dr's permission.(but who knows..if they believe something strongly enough, of course they're going to act on it)
I'm not sure I (or anyone else) got through to them..when someone is very convinced of something,(make that religiously convinced) it may feel like everyone else is the enemy,and out to ruin their faith. Add to that, that they are convinced they see miracles happening every night(physical ones) and one starts to wonder if they have the ability to distinguish between reality/snake oil medicine at all. At one point(in my singlehood), I went out with one of them.(thankfully it never got to the point of his trying to cure my diabetes)
Hope is a powerful drug,and we all wish for a cure, but the reality is, there has never been anyone supermiracuously cured.(of either type 1, or type 2) And unfortunately, when one charges out ahead, intent on curing the diabetes,the person with diabetes soon ends up quite ill,or dead. I think hope, diabetes,and God can peacefully coexist,I believe God gave us the tools to take care of ourselves(and have a life expectancy far beyond what it was in 1921.) One can pick any verse out of the Bible,& quote it till they're blue in the face...and beyond making themselves appear seriously ignorant of how God actually interacts with the real world,its just like talking to a brick wall. They don't consider any other alternatives,having a debate isn't really possible from either perspective.(medical facts, or theology)So they go back to their favorite verse and cling to that. I am not bashing Christians,(I am one)but its like an EMT walking into an operating room and doing quadruple bypass surgery.(they have no clue what they're really saying,just like an EMT would not do surgery correctly)Their doctor needs to stay involved(very heavily involved),and have CPS out there the moment something seems remotely fishy. Denial is one thing, but a child's life is quite another. You never really know what someone will do.
Thursday, March 25, 2010
No Strings Attached
All my 'betic life I've been waiting.Waiting on an illusive number that hasn't once presented itself.
I was close once...at 7.3 Enough to trigger a hasty "Good Job! Now do better" from the endocrinologist.
Instead,I did worse.(the power of reverse psychology on the tender D psyche)
11.5 years,thousands of set changes & pricks & highs and lows later,diabetes is just as hard as it was,starting out.Jump on band wagon,fall off.Repeat process.We do the best we can with what we have,and some people out there who shudder in horror at the thought of anything 8.0 and beyond really won't get the point of this post.Even some type 1's.Most appts,they'll hear "Excellent Job!" and can bask in the glory of that.They don't really understand the others..it's much harder,and when the topic comes up,we clam up.(for obvious reasons) There is still so much judgement out there,even in the D community.Just once,though,I would like to hear a heartfelt
"Well done,Heidi."
(without the addendum)That'd be awesome.I need to get there,for me.(D's can do anything except get a decent a1c?) I want that 6.9.
And I hope this will get me there.
- Posted using BlogPress from my iPhone
I was close once...at 7.3 Enough to trigger a hasty "Good Job! Now do better" from the endocrinologist.
Instead,I did worse.(the power of reverse psychology on the tender D psyche)
11.5 years,thousands of set changes & pricks & highs and lows later,diabetes is just as hard as it was,starting out.Jump on band wagon,fall off.Repeat process.We do the best we can with what we have,and some people out there who shudder in horror at the thought of anything 8.0 and beyond really won't get the point of this post.Even some type 1's.Most appts,they'll hear "Excellent Job!" and can bask in the glory of that.They don't really understand the others..it's much harder,and when the topic comes up,we clam up.(for obvious reasons) There is still so much judgement out there,even in the D community.Just once,though,I would like to hear a heartfelt
"Well done,Heidi."
(without the addendum)That'd be awesome.I need to get there,for me.(D's can do anything except get a decent a1c?) I want that 6.9.
And I hope this will get me there.
- Posted using BlogPress from my iPhone
Tuesday, March 23, 2010
Reform or Deform?
One hundred and forty-nine years ago, on the brick of a Civil War,Lincoln put his thoughts into immortal words:
...I believe, this nation cannot permanently endure half slave and half free.
He was right of course,and four years of bloody war soon followed. America was defined in that war,and a new America arose,one that would eventually pull itself out of the mud and unite, with freedom for all. More then that was decided though,and the power of the people switched from the state governments to the Federal Government.
Ah, the federal government. Born from the Founding Fathers quaint wishes to be a medium of the people, serving the people,and not leeching the people. That was so long ago that the vast majority of people in the country(maybe even Congress) don't even know who the Founding Fathers were.(Or care,which is why Congress can get away with so much)
I say, a nation cannot endure half socialist and half not. Can we now expect the federal gov't to fork out for our houses, our education,our car insurance,and everything else? I am sad for America,sad that we're giving over yet another piece of ourselves to our gov't. In Denmark,the gov't pays for your education,your healthcare,and probably quite a bit else.(they also pay out the wazoo in taxes) In America,this will probably be either a great help, or a grand disaster(premiums won't go down, people would rather pay the $700 fine & get insurance again when they do get sick)and all the sick people will be bleeding the insurance dry,premiums/etc. will go through the roof. And I hope I'm wrong...that it works out.(people should have their pre-existing conditions covered) But America needs to start taking responsibility and working to BE healthier,cutting out cigarettes,drugs,alcohol,massive BMI...there needs to be some clause in the Medicaid/Medicare policies that says if you abuse such substances,you are not eligible for benefits. We also need to stop paying for illegal aliens, we spend billions of dollars a year on them. We're killing ourselves, and the gov't is paying for it.(in Denmark,there is practically no morbid obesity so at least they've got that going for them.Their hospitals don't have to shell out for that) In my opinion, we're focused on all the WRONG things,and there is more to this then meets the eye.People need health insurance,but for the few that use it properly,there are a thousand more who abuse it.(carte blanche, play 911 tag on a Friday night just because you're bored/or in need of a bath/company. Which I witnessed, when I was on the rescue squad.)And the hospital passes on costs to everyone else to cover the bills, so they can stay in business. There needs to be some responsibility with this. Yes, I know there are many good,hardworking people out there who just can't swing it,chronic disease/everything else can be really expensive but I don't see this as helping the 2 million other Americans who have no desire to spend thousands on health insurance they don't want. It's so mixed up,and no one knows what will happen.
...I believe, this nation cannot permanently endure half slave and half free.
He was right of course,and four years of bloody war soon followed. America was defined in that war,and a new America arose,one that would eventually pull itself out of the mud and unite, with freedom for all. More then that was decided though,and the power of the people switched from the state governments to the Federal Government.
Ah, the federal government. Born from the Founding Fathers quaint wishes to be a medium of the people, serving the people,and not leeching the people. That was so long ago that the vast majority of people in the country(maybe even Congress) don't even know who the Founding Fathers were.(Or care,which is why Congress can get away with so much)
I say, a nation cannot endure half socialist and half not. Can we now expect the federal gov't to fork out for our houses, our education,our car insurance,and everything else? I am sad for America,sad that we're giving over yet another piece of ourselves to our gov't. In Denmark,the gov't pays for your education,your healthcare,and probably quite a bit else.(they also pay out the wazoo in taxes) In America,this will probably be either a great help, or a grand disaster(premiums won't go down, people would rather pay the $700 fine & get insurance again when they do get sick)and all the sick people will be bleeding the insurance dry,premiums/etc. will go through the roof. And I hope I'm wrong...that it works out.(people should have their pre-existing conditions covered) But America needs to start taking responsibility and working to BE healthier,cutting out cigarettes,drugs,alcohol,massive BMI...there needs to be some clause in the Medicaid/Medicare policies that says if you abuse such substances,you are not eligible for benefits. We also need to stop paying for illegal aliens, we spend billions of dollars a year on them. We're killing ourselves, and the gov't is paying for it.(in Denmark,there is practically no morbid obesity so at least they've got that going for them.Their hospitals don't have to shell out for that) In my opinion, we're focused on all the WRONG things,and there is more to this then meets the eye.People need health insurance,but for the few that use it properly,there are a thousand more who abuse it.(carte blanche, play 911 tag on a Friday night just because you're bored/or in need of a bath/company. Which I witnessed, when I was on the rescue squad.)And the hospital passes on costs to everyone else to cover the bills, so they can stay in business. There needs to be some responsibility with this. Yes, I know there are many good,hardworking people out there who just can't swing it,chronic disease/everything else can be really expensive but I don't see this as helping the 2 million other Americans who have no desire to spend thousands on health insurance they don't want. It's so mixed up,and no one knows what will happen.
Friday, March 19, 2010
Spring Training
As the final hour before Spring Break would begin,slowly played itself out,the class could be observed in various positions of un-rapt attention,namely:
-biting fingernails
-scrolling on mobile phones
-contorting arm into trianges,from body
-taking notes(1 person)
-staring at their Dexcom and willing it to start going down after two consecutive boluses
-faceplant,into desk
-drinking Starbucks & faking interest
-twisting hair
At long last,we were free to go,after reviewing lung/slide anatomy & making sure we were clear on every T-Cell,B-Cell,and ph formula known to man.As deeply fascinating as it is,knowing all the screwups of the immune system(and how dka kills),there is a point where your brain just shuts down.Especially if it's 65 degrees & sunny outside.
Since it's Spring Break,I hope to get alot done.
1.Review and prepare for the test on the first Monday after spring break.(yeah,welcome back)
2.Step up my gym routine to every other day.(snazzy new pair of running shoes should help with that)
3.Clean.Organize.Cook influx of various freezer-friendly foods.
4. Basal test.Yes,it's been forever since I did one.Actually communicate with my DE,& TRY to get this a1c down.Testing doesn't do any good if you do the exact same thing the next day.
5.Clean up this blog a bit.Do a V-Log.
6.Family stuff,go down to visit my parents and brother.
That should keep me more then busy!(for the next 10 days)Hopefully,I'll stay motivated.The last few weeks,it's just seemed like every possible body system has fell apart on me.(I'm sure you know the feeling,steamroller blahs)
- Posted using BlogPress from my iPhone
Monday, March 08, 2010
Secrets of the Genome, Part III
I did things their way. I trekked down the City of Un-Brotherly love,just for the sole purpose of getting lab work.(footing the gas, parking garage fees...plus an entire morning of dealing with a registrar who had seemingly no inclination to find the orders, or call the nephrology office for MORE orders. I guess that's my job, along with drawing my own blood, running the lab tests, and hand-delivering it to the doctor)
And then, I waited. Wednesday.Thursday.Friday.(Saturday, Sunday) This morning, I called back and plugged the voicemails of every existing phone in the nephrology department.
Miracuously, the doctor called me back, and said the lab had neglected to get an actual magnesium level(along with 3 other actual tests)and she was sorry, and frustrated right along with me. Any chance that my primary care provider could get them?(no, my pcp doctor won't touch the issue with a ten foot pole) Frustration number one.(I just spent how much money on a totally useless mission) As it's been two months..the followup is just around the corner, in April. When you go to the lab, you actually now have to assume that they aren't running the right tests & personally question them on what they should be running.(which they won't believe and will have to verify, taking several MORE hours)
Without those "key" tests,it's impossible to really know for sure.And the lab in Virginia sent notes..not actual values, so from reading those notes they just get the general idea that it's solely a magnesium-wasting problem. Inconvenient, but hardly a shoe-in for Bartter's Syndrome. But it's not just a magnesium problem,although I waste alot of calcium as well,my levels of that are normal.(it just doesn't reabsorb into my kidney tubules)Leading my current nephrologist to proclaim I have Bartter's, the other syndromes don't involve leaking calcium.
All I really wanted is genetic testing,not to waste half my life confusing them and frustrating me.
Although they now actually believe that yes, I do have an actual genetic defect involving the magnesium channels,and suggested various non-productive ways to deal with it. Oral magnesium.(been there, done that,every brand/dose/way. Induces horrid, persistent dierrea and even increases magnesium loss) Amiloride, a K-sparing diuretic.(yes, I do that too) I hadn't told them that I pump magnesium,it didn't really seem like they'd A)have any idea what I was talking about or B)approve.
"Or, we could lower your kidney function, since lower kidney function slows electrolyte loss. We can do this via (large)doses of NSAIDS."
EXCUSE ME? Did a physician (at a world renown medical institution, grant you) actually just suggest/offer to help put me in renal failure,as a treatment for this thing? (At the initial appointment, she spent five minutes telling me to never,ever,take an NSAID because it was bad for my (otherwise fine) diabetic kidneys. To say that it was shocking was an understatement. Yes,this condition is bothersome,inconvenient, and frustrating, but it's treatable. Unlike kidney failure, which is infantly more serious and 100% more fatal. If you just treat the body with the appropriate electrolytes,it's like diabetes,you stay happy and healthy. I will take my imperfect kidneys over kidney failure any day. I did not say this to her,but that's what I thought.
Then we discussed genetic testing. It's about $4,000, which would not be covered by insurance..and would likely(99.9%) just show .00000001 chance of passing it on.(not worth it, in her opinion) I could go to the NIH or somewhere, and try to get in on one of their studies to have it done.(but at the end of the day-what's it really show that medical testing has not already confirmed?) All of these syndromes are so rare,that no one really knows much about the genetics of them. And I think I will do that(go the NIH route), because I want to know.
So, by the end of the conversation,I'd lost complete faith in JH to acquire/diagnose anything..it wasn't why I'd gone there in the first place,
but if they don't really believe in the necessity of something,and lose every
core piece of info while trying to diagnose something,it's not really worth it. No, it's not imperative that I know for sure that I have Bartter's Syndrome, but it seems to me to be the difference between a random genetic defect and a disease that has statistical evidence,with the later having a higher chance of happening in offspring. That's really what I wanted the information for. Perhaps I just have to accept that medicine is an imperfect science..ask 5 nephrologists something, and you get 10 different opinions. One can't predict the future..or the chances that one's offspring won't be born with some sort of defect. Fortuantly, the chances of this one defect seem to be extremely,extremely low.(more chance that a child would acquire diabetes)
And then, I waited. Wednesday.Thursday.Friday.(Saturday, Sunday) This morning, I called back and plugged the voicemails of every existing phone in the nephrology department.
Miracuously, the doctor called me back, and said the lab had neglected to get an actual magnesium level(along with 3 other actual tests)and she was sorry, and frustrated right along with me. Any chance that my primary care provider could get them?(no, my pcp doctor won't touch the issue with a ten foot pole) Frustration number one.(I just spent how much money on a totally useless mission) As it's been two months..the followup is just around the corner, in April. When you go to the lab, you actually now have to assume that they aren't running the right tests & personally question them on what they should be running.(which they won't believe and will have to verify, taking several MORE hours)
Without those "key" tests,it's impossible to really know for sure.And the lab in Virginia sent notes..not actual values, so from reading those notes they just get the general idea that it's solely a magnesium-wasting problem. Inconvenient, but hardly a shoe-in for Bartter's Syndrome. But it's not just a magnesium problem,although I waste alot of calcium as well,my levels of that are normal.(it just doesn't reabsorb into my kidney tubules)Leading my current nephrologist to proclaim I have Bartter's, the other syndromes don't involve leaking calcium.
All I really wanted is genetic testing,not to waste half my life confusing them and frustrating me.
Although they now actually believe that yes, I do have an actual genetic defect involving the magnesium channels,and suggested various non-productive ways to deal with it. Oral magnesium.(been there, done that,every brand/dose/way. Induces horrid, persistent dierrea and even increases magnesium loss) Amiloride, a K-sparing diuretic.(yes, I do that too) I hadn't told them that I pump magnesium,it didn't really seem like they'd A)have any idea what I was talking about or B)approve.
"Or, we could lower your kidney function, since lower kidney function slows electrolyte loss. We can do this via (large)doses of NSAIDS."
EXCUSE ME? Did a physician (at a world renown medical institution, grant you) actually just suggest/offer to help put me in renal failure,as a treatment for this thing? (At the initial appointment, she spent five minutes telling me to never,ever,take an NSAID because it was bad for my (otherwise fine) diabetic kidneys. To say that it was shocking was an understatement. Yes,this condition is bothersome,inconvenient, and frustrating, but it's treatable. Unlike kidney failure, which is infantly more serious and 100% more fatal. If you just treat the body with the appropriate electrolytes,it's like diabetes,you stay happy and healthy. I will take my imperfect kidneys over kidney failure any day. I did not say this to her,but that's what I thought.
Then we discussed genetic testing. It's about $4,000, which would not be covered by insurance..and would likely(99.9%) just show .00000001 chance of passing it on.(not worth it, in her opinion) I could go to the NIH or somewhere, and try to get in on one of their studies to have it done.(but at the end of the day-what's it really show that medical testing has not already confirmed?) All of these syndromes are so rare,that no one really knows much about the genetics of them. And I think I will do that(go the NIH route), because I want to know.
So, by the end of the conversation,I'd lost complete faith in JH to acquire/diagnose anything..it wasn't why I'd gone there in the first place,
but if they don't really believe in the necessity of something,and lose every
core piece of info while trying to diagnose something,it's not really worth it. No, it's not imperative that I know for sure that I have Bartter's Syndrome, but it seems to me to be the difference between a random genetic defect and a disease that has statistical evidence,with the later having a higher chance of happening in offspring. That's really what I wanted the information for. Perhaps I just have to accept that medicine is an imperfect science..ask 5 nephrologists something, and you get 10 different opinions. One can't predict the future..or the chances that one's offspring won't be born with some sort of defect. Fortuantly, the chances of this one defect seem to be extremely,extremely low.(more chance that a child would acquire diabetes)
Saturday, March 06, 2010
Post-Endo
(dedicated to everyone out there who has ever dealt with a failed infusion set/monsterously high bg in the middle of the night.)
By the light of a Ping's eery green glow
Pops a 380 plus(oh,so NOT-low)
Soooooooo....
Where do you go?
When your brain turns to mush
As your kidneys re-flush
No fluids enough
To feel rid of this stuff.
Tired and cranky,sad,mad,& forlorn
A number in flight..ah yes,it is soarin'
Last night's 96 is so quickly forgot
An infusion set dead,means it's time for a shot.
Somewhere over the rainbow...
Or down the Valley of the Shadow.
Fighting for life,trying to show
That tonight's DKA-vitation will end in NO.
Where do you go?
when diabetes,your foe
Springs a high,then a low
For a chunk (of) cookie dough.
These weapons,so crude
For a foe,oh so shrewd
New tools are real great
But will they come way too late?
Where do you go
To not wallow in woe
pick it back up,& show
d that you are the pro
and that one thing you know
that you'll get up...you'll grow.
- Posted using BlogPress from my iPhone
By the light of a Ping's eery green glow
Pops a 380 plus(oh,so NOT-low)
Soooooooo....
Where do you go?
When your brain turns to mush
As your kidneys re-flush
No fluids enough
To feel rid of this stuff.
Tired and cranky,sad,mad,& forlorn
A number in flight..ah yes,it is soarin'
Last night's 96 is so quickly forgot
An infusion set dead,means it's time for a shot.
Somewhere over the rainbow...
Or down the Valley of the Shadow.
Fighting for life,trying to show
That tonight's DKA-vitation will end in NO.
Where do you go?
when diabetes,your foe
Springs a high,then a low
For a chunk (of) cookie dough.
These weapons,so crude
For a foe,oh so shrewd
New tools are real great
But will they come way too late?
Where do you go
To not wallow in woe
pick it back up,& show
d that you are the pro
and that one thing you know
that you'll get up...you'll grow.
- Posted using BlogPress from my iPhone
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