Tapped

We have a diagnosis.

I have experienced gastro symptoms, dizzyness, at various points since last year.
The gastro symptoms reached their zenith earlier this year + haven't really bothered me on a consistent basis.(not like they were) So I assumed whatever was causing that, was gradually getting better.

On a wild shot,my doctor ordered a spinal tap.

And it came up positive for various markers of inflammation. So he ordered a head MRI(completely normal)

And ordered another spinal tap, to see if anything had changed.Today, I called them back to find out the results
and the results are unchanged, so its his professional opinion that I have Mollaret's Meningitis,a sort of chronic inflammation that doesn't show up on MRI and can occur without fever. Meningitis can also explain the puking. Mollaret's is really rare so he is running several other tests to make sure its not caused by a viral agent. I don't know that there is any treatment other then supportive, have an appointment this Friday to discuss it all.
This is beyond weird,mind blowingly weird, weird, weird.

Notes from a Spinning Planet: FFL Recap

It wasn't just for the kids. (though it was mainly for them)

Nor the celebs with type 1.

Nor the parents + siblings.

Nor the doctors/researchers/medical professionals.

Nor the renegades who didn't quite fit into any of the groups. This wasn't middle school(although some of the renegades did eventually meet/hang out, just like middle school)

It was bigger then that, we were there for what we had in common, not what we didn't.(how else could I think of topics of conversation (other then the weather) (cold turkey) if it weren't? I'm not much of a talker.

No, I happen to think it was for all of us...how you could go to a conference with over 3000 informed,passionate (for a cure) people and not be inspired would be beyond me. It's not just what you learn, it is the total experience. For me, just being there was motivation to keep going.

(and that's all for today,first day back home and I'm catching up on everything(including sleep)

The Forgotten Patient

On a non-D message board that I frequent, an individual posted about the problems he was having with his diabetes..this being your regular run of the mill website, there were the usual admonitions to suck it up and take care of it, along with the tales of aunts/uncles/cousins/dogs dying gruesome deaths from it + how it would be him, if he didn't start trying harder.

That made me see red..here's this guy, he has type 2 diabetes and little D education..he gets sick,ends up in the ER with a blood sugar of over 500-the ER doesn't refer him to anyone, they treat his bg w/insulin and fluids and kick him right back out. Continues to take his Metformin, and his blood sugars continue to hang out in the 300-400's. Doc tells him to increase his Metformin(apparently no ketones)but he's still high.. this guy needs to be on insulin. He's going to switch doctors, but right now he's floundering around with no support whatsoever.

Nope, this guy isn't the forgotten patient.(as sad as it is) The forgotten patients are the sons, daughters, sisters, brothers, children, wives, husbands, friends, grandparents, grandchildren, etc.. their loved ones die from diabetes, and they don't get the real scoop- they are left to make their own theories about how rotten a person they were, not to take care of themselves. And the doctor's quick "they died from diabetes" does nothing to alleviate the automatic blame placement.Mentally, these people need more then the bare-bones facts..they need to know what a complex mess it is.

This is diabetes. Even people who try, may eventually get complications, and pass away from them. There is nothing moral about it- yet "you're killing yourself" is the phrase on millions of lips, millions of tombstones, millions of doctors' conversations. Yet, someone who is driving too fast, gets into an accident, and gets killed is never accused of killing them self.

We need education, THEY need education, that diabetes is not some simple x-y-z equation and you live happily ever after. Doctors need to tell the families that their loved ones weren't horrible people intent on killing themselves as quickly as possible. Honestly, the many impediments to good control...(financial-if I had no health insurance, I'd be in significantly worse control then I am now, skimping on test strips,cheaper insulins, etc.) emotional...other illnesses...lack of a good, basic diabetes education..

the list never ends. Shouldn't we be trying to help people, giving them what they need, and not making them feel even worse about the situation then they already do? Who DOESN'T know that this isn't the right path, even if they're merely ignoring/engaging in deep denial about the diabetes? They know, they just don't want to face it. There are steps to accepting a chronic disease, and it can take a pretty hefty combo of things to get a person to start caring.

I guess the only real solution is to come up with a cure, then we can all forget about the archaic disease called diabetes + start blaming people for other diseases.(although I can't think of any that incur so much blame as diabetes)

Basic Instructions Before Leaving Earth

Next week.

Next week, I throw my junk into the biggest suitcase I can find, and take to the skies.

Final Destination: The CWD Friends For Life Convention, which might as well be another planet, it is so different from normal life.

I'll roam with ax chopping murderers(oh, wait,that's ME-not her!) j/k Wendy, meet (and re-meet) other D-Bloggers(Tudiabetes in there as well), see my ex Endo that I haven't seen since the funeral, drink alot of alcohol while working on my tan(great thing is, everyone will have glucagon kits! if I need bailing out), laugh, (probably) bawl, and have another amazing time of my life. It won't be absolutely perfect, because my husband can't come, but hopefully next year.

I cannot WAIT...
(I'm mostly packed already..and even have a letter from my endo for the unintellegent TSA agents)

Pies in the Sky

Got an "A" in my psych class, I really wasn't expecting that at all.(since I went into the final with a B average)


This was kind of a bummer morning..got a glossy flier in the mail, advertising some research study(which I'd hoped would be an investigational cure type), excitingly called about it,but it was just an inhaled insulin study.(two groups, inhaled "Generex" insulin and the nph/regular group) People STILL use NPH?? that was the most shocking thing about it. I mean, the control group should at least get to use humalog/lantus. No way I would e.v.e.r. use NPH/regular again, and it's doubtful that I'd even EVER use inhaled insulin.
Darn.Missed the cure boat..I had my hopes sky high that there was some kind of therapy out there that was not toxic to the rats...and had been approved for trials in humans.Kind of like INGAP.

Wednesday Morning Comin' Down

1.Well I woke Wednesday morning, with no way to hold my head that didn't hurt

And the Diet Coke I'd had for breakfast, wasn't bad, so I had two more for dessert

Then I stumbled to the nightstand, grabbed my meter and blew off all the dirt

Checked right in at 303..and knew I was was more then ready to greet the day!


2.I'd blown my luck the night before, with Chinese food-complete with all the fixin's

As I changed my set, the needle bled and so I screamed like the dickens

Then I drove by a DQ, and caught a glance of someone eating ice cream

And well, it took me back to something

That I knew I'd lost somewhere, somehow, along the way.




On a DQ restaurant sidestreet

I'm wishin' so, that I was cured

Cuz' there's something in a Sundae

That makes the body, know you'll pay

And there's nothing short of DKA

That's half as effective, as the threat

Of a dripping, gooey Sundae

Putting you in loads of debt.




2.Though I know a pump won't ever stop the swinging

And sometimes, its too hard to sort the choices life keeps flinging

As I headed home, and somewhere very close a fire truck was shrieking

It echoed through my memories, reminding me of all those yesterdays.



On a DQ restaurant sidestreet

I'm wishin' so, that I was cured

Cuz' there's something in a Sundae

That makes the body, know you'll pay

And there's nothing short of DKA

That's half as effective, as the threat

Of a dripping, gooey Sundae

Putting you in loads of debt.


P.S. I know D's can have their cake/ice cream + eat it too..+ I'm not bashing that, but bgs are still going to spike+ crash + eating carb rich foods are a tremendous struggle for me to get right)

Cartoon of the Week (#2)

(totally unrelated, but very funny!)

Flying Solo

"Is there a doctor or paramedic on board?" the flight attendants, moving around the mostly sleeping cabin, inquire.

My husband gives me a poke. "Ask if you can help."

"I'm NOT a paramedic."

But there are no doctors on board.

No nurses.

No paramedics. I believe that anyone with money would not be flying packed-rat class on the world's worst airline, red-eye to LAX on a Saturday night. Three hours delayed, to boot.

In the news, when people have an onboard emergency, a host of medical personal(physicians, surgeons, flight nurses, etc.) pop up from out of the woodwork and work feverishly to save that person's life while the pilot makes an emergency landing. Trained people, knowledgable people, people you WANT to be working on you. Not some petrified young EMT who has never done CPR solo( the codes I've been involved in, the paramedics were all over it and the best thing I could do was not get in their way and hand them the appropriate tools at the appropriate times). Except on Manniken Annie, and that hardly counts.

But I appear to be the only one. How can one just sit there and do nothing, and be able to live with yourself later on? Despite the incredibly poor timing (I wouldn't want anyone like me to be working on me) you can't just do nothing. I pledge not to lose them, or my own cool. (until later) I briefly consider the legal ramifications if this individual dies while under my offered services, no good Samaritan Laws protect you if you're a medical professional. Guess I'll be spending the next X years in jail.

Thunk, thunk, thunk. That's the sound of my own heart,racing fit to beat the top qualifier in the Indy 500. Dexcom blood sugars immeadietly begin to go up.

They aren't having chest pain, difficulty breathing, or a heart attack. Just an apparent run-of-the-mill stomach bug.

Thank you, God. Although I could do CPR, I would prefer the first time not be at 32,000+ feet, solo responsible for someone else's life.(aren't flight attendants supposed to be trained in CPR/AED? What do they think the doc/paramedic has, an advanced cardiac drug box with them?)

Finally my bg levels off at 250 mg/dl. I'm really not ready to fly solo on this one, the next person to have a heart attack would be me.

Another Piece of History

Diabetes Gettysburg Address..(thought about it when I read this.)

Four score and four years ago, our Canadian brethren brought forth, on this continent, a new medication, conceived in ingenuity, and dedicated to the novel idea that billions should not die.

Now, we are engaged in a great global war of chronic disease- testing whether, a group of diabetics, we can long endure. (With toes and teeth intact) We are met on a battlefield of that war- the field of research. We have come to dedicate a portion of ourselves, to eradication of that dread disease, that sucked the last breath from their dying lips. It is altogether proper that we should do this.

But, in a larger sense, we cannot dedicate-we cannot consecrate- we cannot ever do enough. The brave individuals, living and dead, who have struggled (and continue to struggle) consecrate it far beyond our poor power to add or detract. Rather, it is for us, the living, to be dedicated to this last remaining task- that from these pitied dead we take increased devotion toward ending diabetes- that we here resolve that these dead shall not have died in vain, that this planet shall have a new birth of freedom, and that this disease, of, for, and by the people- shall rapidly perish from this earth.

Have a great 4th, everyone. We enjoy so many freedoms, and the "life" (in the life,liberty, and the pursuit of happiness) part is a biggie(one that PWD's, prior to insulin, did not have).

Dreaming with the Dexcom

I've had plenty of diabetes dreams, and I've had lucid dreams (something I never knew other people experienced too, until I took psych). Never had a diabetic lucid dream although this one kind of came close. I always thought my dreams lasted for about a millisecond and the seemingly endless high or low were just exaggerations. But my textbook, informed me that dreams unfold in real-time. I didn't think it was possible to have a low lasting over 30 minutes without A. waking up or B. going into seizure. Dexcom has proved me wrong.(apparently, I do have a glucose producing liver at moments when it actually counts)

I think it would be kind of neat to be dreaming about a low or high(which translate into feeling hungry and thirsty, in the dream) and see how low or high I actually am, and for how long. (corresponding time chunk) Not that difficult, because if I wake up suddenly, most of the time I remember my dreams. Lucid dreaming is pretty hard/rare though, you can't just decide to do it. (dumb luck)I may know that I have diabetes in my dream, but not that eating or drinking will not cure my symptoms.So I'm merrily eating mountains of pancakes or drinking gallons of water and it isn't doing any good at all.(till I wake up) I don't know if wild bg variations make for more nightmares, probably not, I've always dreamed alot. The problem with using the Dexcom to track this is the Dex has a tendency to shriek/vibrate its head off anytime you're outside of the range so you really don't get a chance to wake up naturally from the dream. And there are certain safety features(under 55, over 400?) that even if you have the alarms off those safety alarms will still boot in.

Sometimes I turn the fan on high and put the dexcom under the bed so it won't wake me up but it will still read. For the most part, I have good internal cues to wake up when low but its not always right away. The dexcom will wake anyone up,(usually I put it under my pillow) but deciding whether to treat that (usually) high is another story altogether. It's best to be very, very conservative at an hour where you're so exhausted that a low is the last thing you need. Bottom line, I'm grateful for the chance to correct the situation before it gets out of hand..even if it does wake me up all night long some nights.