Promise to Remember Us

Yo,it's me. I'm not a small,cute child with diabetes...or that awkward,shy teenager. But it's still type 1 diabetes...and I'm here for the same reason as everyone else,to raise funds & to show support for a cure.

So when you loudly announced, "Welcome,parents of children with diabetes!" I was not amused,what is everyone else,chopped liver? There are hundreds of grandparents,family,friends,and adult PWD here as well.They deserve mention.(perhaps it is par for the course,it's my first JDRF walk & I dunno what is standard) They are a vital part of the support team & the push for a cure too.

Despite that,it was a gorgeous April day,& we completed the walk (and I bolused perfectly for the food,awesome bgs).Then a member of the team tried to sell me on the idea of "going natural to get off insulin." Politely told him it wasn't possible & why. He didn't get it,though,(people walk for many reasons,& some people have litterally no clue what type 1 is)













Promise to remember all of us..from the cutest little kiddo shirt (with a "I'm going to eat you,Diabetes!" ) to the grandparent with their grandchild's handprints emblazoned on their walk tshirts.Because type 1 diabetes affects all of our lives,it's not just the 0-18 group.

- Posted using BlogPress from my iPhone

April 23, 2001

Nine years ago today, my life changed. (for the better)

I don't have my Minimed 508 anymore,lent it to a friend & presumably, they'll probably use it until it dies. I didn't even know they made supplies for it anymore, but I guess they must.(the person does not want to switch,& it's their choice,I'm glad they're getting some usage out of it.)

I had received my 508 in January 2001, but I couldn't open the box until my insurance company actually approved it. And that took another month. Scheduling a start date was another 2 months, the d-clinic was extremely backed up. Insurance finally approved on Feb.26,2001; but (later) Minimed denied my eligibility for an upgrade to the 511(?) , apparently two days too early to get in on that deal. If I wanted the upgrade, I'd have to pay for the new pump.I was so upset at this that I vowed it would be my last MM pump,it was a great pump but the customer service was non-existent at that company. Like I can control when my insurance company approves something. I never won that battle,& its all water under the bridge now,but they lost me as a customer when they did that.

On the morning of April 23,2001, my dad drove me to the diabetes clinic for pump training.(a parent had to be there,though I was an adult,it was a pediatric clinic)I got set up on the pump, received the new Ultra (which I drooled over..making the quantum leap from 45 sec Accuchek to 5 second Ultra was amazing) while the other trainee(a young teen) screamed bloody murder as the Silhouette was inserted.(yes,sils can hurt,but I think it was just nerves,she stopped screaming when it finally got in) I then gathered up all my supplies,etc.and followed the CDE over to the cafeteria where a younger dietician met me & we did practice bolusing for lunch. That finished, I followed her up to the pediatric ward where I spent the next 24 hours on observation status. My blood sugars stayed like a literal rock the entire night,varying by about 6 points,but when morning came they skyrocketed up to the 300's. That was the day of a class final exam,and I had a presentation to give that evening(an hour away). They finally let me out late afternoon and I barely got to my class in time,but proudly sporting my 508 (in public) for the first time. The one thing I never liked about the 508 was its propensity for the cartridge door to pop open and the cartridge to come flying out(it once gave me an accidental bolus). But otherwise,it was a great pump,& it definatly improved my control. It got me off the Lente rollarcoaster..and not having to stuff down carbs every couple hours helped me lose excess weight.

Dr. Google is Not Your Friend

When you google "low T4" and "normal TSH" and "excessive urination" you get a whole slew of stuff that you did not want to know. Seriously, pituitary, do NOT go the way of your sister organ(la pancreas) and whack out on me. Because you happen to control 4-5 other important organ functions, not just one.Will recheck in a month..it could just be a lab error,and I know widescale immune dysfunction is very common in type 1 diabetes(thyroid,adrenal,celiac). Actually,I could handle it if it was just hypothyroid,that's easily manageable. I'm trying not to think about the alternatives.

A Mile in My Flip-Flops

(it needs editing, and music, but I hope to put this on YouTube)

Weekend Adventures

I had a pretty nice weekend,(all things considered)on Thursday I went to a ADA/Animas event featuring America's favorite diabetes shrink, Richard Rubin. I have heard him before,he's always a speaker at Children With Diabetes FFL conferences. Animas provides the awesomest snack/meal refreshments...so it had that going for it.(food in abundance) It was held at a private company, after hours,so I had to show ID to get in.(the first time I've ever had to show ID to attend a diabetes event)I met up with someone who occasionally attends the pump meetings,and is sort of around my age(well, more so then 60)& it was cool talking to her again. Also found out that the area has a young adult diabetes group,& they have monthly meetings(bowling, etc.) so I may check that out, at some point.

Friday, my mom came up, and we got stuff ready for the next day's fleamarket.(that's all I did that day)

And from 1 am to 1 pm Saturday, I...

-went from 313 to 171 to 365 to 63 to 157 to 124 to 312(yes, no Dexcom that day)

-was grateful I had a quick acting glucose drink on me when I hit 63, there's nothing like having that quick boost of sugar when there are 12 people simultaneously clamoring for attention and the fact that you're really not totally with it doesn't matter,15 carbs lasts till you have time to devour half the bag of chips and be 157 two hours later.

-figured that I should just go into the battery selling business,everyone buys them. I could pay for an Orlando vacation if I'd simply seriously stock up in the December deals season. Sold out, very quickly.

-raised $12 for the JDRF Walk to Cure diabetes, woot! (sadly,people don't just throw money at me, had to see something else) This is the first walk we've ever done,and have little clue about sponsership and all that jazz. One nice guy even bought extra when he heard what it was for.

-got a sunburn(windy,60 degree weather)

-dumped diet coke all over the comptroller form and have a heck of a time trying to write on it. Maryland is a very taxing state, and limits you to 3 flea markets/yard sales per 365 day period. (without lisence) Other states, they don't give a rap. But for the entrance fee, you get access to a very adequate selling space, and thousands of people flow through every weekend.(free to attend)

-bought more junk

-swapped remaining junk with my mom

-rescued bins/boxes from a slightly confused individual who had decided we were throwing them away. Didn't ask, just took.(there were no signs declaring them free, either)

-got rid of a car full of stuff, but still took a car full home.

Despite that, had a good time...most of the people were polite,and not crazy.

Next morning, I was so sore I could barely move, but according to the Diabetic Athlete's Handbook, delayed muscle soreness is a good thing, because your pooped out muscles will not reach the same level of soreness in the next 6-8 weeks, no matter what you do.You're also not able to convert glycogen as effectively, and may see higher bgs.(true to form,I did see higher bgs) I used it as an excuse NOT to go to the gym that day.

There are several more D-events on the schedule this week,but there's also alot of school stuff to get done, so I'll probably only make it to 1.

Tim Burton's Secret Formula

A Day at the Diego Dzoo

(forgive the incorrect date stamps)



















































































(and yes, we did spend a disproportionate amount of time looking at reptiles)

Earthquake!

As an East Coaster,you learn to prepare for various nateral diasters.Floods.Hurricanes.Tornados.Earthquakes really aren't in our repetioire of things to lie awake at night worrying about.

It was right in the middle of the post-Easter Dinner lemon merangue pie when Baja Mexico let loose with a 7.2 after-dinner mint,thereby waking us all up.(in case we were sleeping) It felt initially like a storm shaking the house,only it was a balmy 66 degrees outside & everything was rattling.I stood up,as everyone collectively held their breath,waiting for it to stop.When it didn't,people started climbing under tables,etc.& I headed for the doors,if it was the big one they'd not be pulling my body from the rubble.(give me a natural burial any day)The house continued to shake & then stopped.

"6.9 on the tracker!" one of the other party goers announced.

"That wasn't a bad one,just a tremble," said someone else.

Yeah,it was.This East Coasters face was whiter then the Easter lilys adorning the church that morning.

"Need a drink?you look shaken up!"

"Coffee,please."(which really made no sense but that is what I needed right then)


It was a big deal...& for two people south of the border,it was a lethal day.Give me the predictable blizzard/hurricane any day.


- Posted using BlogPress from my iPhone

iPump: 101

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

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.

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

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.

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

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)

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

The App Spot

(your bi-monthly FREE app report)

1. NBCOlympics. Your up-to-date blow-by-blow of the 2010 Winter Games.(thankfully,they're almost over)
2.FSS Hockey.A way to be painfully reminded,yet again,that Canada kicks our rears in that sport & we just aren't that terrific in it.(it's actually air hockey,but reminds one of hockey in general)
3. Sunday Lawn. This is a really fun little game where you have to mow lawns while avoiding dogs,dog poop,and hamsters.(that break your mower blade and send you back to the beginning)
4. iSurgeon.You,a scalpel,and a virtual lawsuit waiting to happen!
5. Meebo. You can IM with over 100 platforms using this app..aim,yahoo,fb,windows live,gmail,etc.Ultimate geek must-have.
6.iVideoCamera. (.99) Not free...but well worth it,if you are stuck with a 3G and want the video camera option.Exports to Twitter,YouTube,Facebook,Flickr,etc. An awesome app.
7.Hawaii. Get away for a minute with the sights and sounds of gentle ocean sands/beaches.
8.Cool Curlings,Lite.(learn how it's really played...become a virtual whiz!)
9. MyCoke.(a code counter for your coke caps) There's no charge,(it's not texting) and it's faster then entering them all on your computer.
10. 5-0 Radio. Taps into the largest EMS-Fire-Police-other network,live stream.Keep informed,of what's going on in your area and around the world!
(the Aussie accents are absolutely adorable)

- Posted using BlogPress from my iPhone

Inside the JDRF Think Tank

Last night,local pump group had the JDRF VP for Government Relations,Larry Solaris,to come & speak about the work JDRF is doing.And the place was packed,despite the frigid,driving rain that clogged up traffic in every road around there.

I had out my iPhone,furiously Tweeting away with mad abandon so I wouldn't forget anything.I was off in my own little world,not really knowing anyone there anyway,when the speaker came up,introduced himself,and asked what I was doing.I responded,& he said the only day he'd ever Tweeted was when JDRF went to the White House.(Obama Admininistration) I guess that was right before the Secret Service confiscated his phone.(still,pretty cool...Tweeting from the White House!) (I cannot believe I actually told him what I was doing,because for the rest of the night he referred to me BY NAME with various Twitter-related stuff.(in the presentation)To say that he has an amazing memory would be an understatement.)Anyway,the VP had brought along his JDRF entourage-staff to help with the presentation.Animas had furnished the requitory diet coke and carrot sticks,& we all settled in to be duly educated.The VP is a type 1 himself...and that added a touch of realness to the JDRF message.So, he touched briefly on the operating budget of JDRF,amount allocated for research(1.5 billlion,funding through 2011),the artificial pancreas project(goal is,to submit to the FDA for approval within 4 years),Smart Insulin-which is being funded partly by JDRF , microneedles(which are so tiny it's like they don't exist...and JDRF is working with BD on them,potentially to be put into pumps..have potential for much quicker insulin absorbtion), advocacy(Promise to Remember Me,Childrens Congress),walks(and we'll be doing our FIRST walk in April,squee!) ,cgm/pump coverage(they met with top ten insurance company ceo's to see what it would take for sensor coverage)and stem cell research.This is where the mood turned from that of excitement to an emotion of an entirely different sort. I happen to think there are other options to the path to a cure,then that of stem cell research.People say..well,if your son/brother/mom were dying & that were the only chance they had you'd feel differently.It doesn't work that way,you can't approve of something you feel to be morally wrong.Even if it means you have to live the rest of your life with this disease.

Anyway,beyond that,it was a very good presentation,& I'm now all fired up to go harass our Congressmen about more funding!




- Posted using BlogPress from my iPhone

Secrets of the Genome(part 2)

(this is a 3 part series, the first will go up when I find the notebook I recorded it in..and the 3rd will probably go up sometime next decade,if/when it ever gets resolved)

Conflicting things have happened since I went in for genetics testing(at Johns Hopkins, in the later part of January)...most notably, blizzards. Never actually got around to the testing because Hopkins,wants initial dx'ng records before they do any tests. Hopkins, was closed the Friday the snow began,and for the next 9 days. (we were all long shoveled out by then, I tend to think they were shoveled out before we were..and they didn't get as much snow) Monday this week, I called them back-NADA, no records.Tues, the doctor called me-still no records,and they weren't in the office today, but oh yes tomorrow I'll call you back.(as I didn't expect that to happen, I wasn't dissapointed.) Thursday, I called them-still NADA so they suggested I call the old place and see if they'd even sent it. I called, they said they'd sent it back on the 29th and it wasn't there fault that JH was so sloppy. I asked, politely, if they could re-fax it because it appears that it never got through. They said no. (yes, it was shocking, no one has ever refused to re-send something.) You could hear it in their voice that they were 100% sick of the entire situation & 100% sick of me, wishing I could just dissapeir from the planet, I guess. They said they'd maxed out their "fax request" for the month.(1 a month?gee, great policy). I then asked if I could purchase a copy, and they could mail it,(that way I'd be sure to get it) and they said no to that too. Great. I thanked them and hung up, really teed off that it seems to be impossible to get answers from anyone and besides, legally, hello, can you deny someone their own medical records? Faxes do get lost sometimes.(perhaps they're so far beyond mistakes like that that they can't understand that fact) Called JH back, and of course they were off on a two hour lunch so I left a message, and called back later, because I knew they wouldn't call me back. Meanwhile, blood sugar had skyrocketed to 420 and I had had it with trying to be nice to anyone. Guess what-they'd found the (non-existent) fax! I then decided JH shouldered the primary blame, not the other drs office.(yep, JH had gotten it on the 29th) What a bunch of irresponsible dolts. I really thought I'd have to get a lawyer just to get a copy of my medical records. They also said they needed current treatment/lab values, so they were going to call the hospital where I get infusions.(and then call me back) They never "lose" anything.

Of course, they never called me back.(I think they just tack it on the end of things to sound good) 5 times I've called(over 3 weeks) and five times they promise to "call me back". The only way this process is going to keep moving forward is through my own blood, sweat, and tears. Called again today, and yep, they haven't had a chance to call for the records and I am pissed. PISSED.(and I apologize for the language but there is no other word in the English language that describes how I feel) I understand being too busy and all that but its been 3.5 weeks people, 3.5 WEEKS. You don't care two beans about patients.(If you at least called me back it'd be slightly better) And you don't seem to care if the process drags on for months. (At every step of this process, I'm the one to fax, call, and cajole this process along) The doctors are stellar..but the system is horrendous.

Upside Down

You've probably seen this Youtube video, that describes, to a T, what an impact diabetes can have on one's life.



18 months(and 4 days)ago tonight...the world watched the spectacular opening ceremonies of the Summer Olympic Games in Beijing. Most of the world, that is. 08/07/08 was the day my intestines decided to have an intussesseption, and in the wee hours of 08/08/08 I was admitted to the hospital.

Fortuantly, after some more tests(and the drinking of industrial-strength-blockage-remover), it loosened things up..and surgery wasn't necessary. However, I was in alot of pain, I was a diabetic,my labs were whacky, and they weren't going to just discharge me. Morphine dreams was the only thing I watched that day.

The next day,they set about trying to correct the electrolyte situation.3 days later, it was doing better, so they discharged me. And though I have fears sometimes that it would happen again...it seemed to be an isolated,random event.Bowel went back to normal.

Ever since then, the need for magnesium has remained high. 14 months of IV therapy. It's doing better..I can do 2 weeks now w/need of 4grams.(vs even 1 a week, several months ago)And I still hold out hopes, that I can get this pumping thing worked out.(right now, insurance has gotta approve it)

But it's there. Permanently. And my life, will never be the same. Like diabetes...it's here to stay.

Snow Daze

Over the weekend,parts of the North-central-east got hit with El Massivo Snow Storm.Dubbed the "Snowcopalyse" on Twitter,it most definatly left an impact.No where was it greater,then in certain parts of Maryland.Yes,DC,I realize that 25 inches of snow tends to cramp your spending style but there are places that are even worse off so could you do us all a big favor & acknowledge that fact?(DC acts like they're the center of the universe sometimes)Some places got three feet.We were semi-lucky,middle-of-the-packers.(at 30 inches)And we kept our power...which I'm very grateful for.

It's now Tuesday.Roads are still largely undrivable,gov't offices (including the post office) remain closed,and so is school.It's kind of nice,but I worry about the obscene amount of work I'll have to make up..pre-test.I'm back with last semester's prof,& he loves to spring frequent tests.(finish one,turn around & do another) It's not even 4 weeks into the semester & soon we'll be on test #2.

Unfortuently,yet another snowstorm is on it's way.Projected 12-20 inches,which is a crazy amount of snow to be dealing with.(on top of the last round)Digging out our cars was like making a snow fort,natural isolation from the neighbors and the world.With this one...we'll have our own snow castle! At 5'1, said snow totals will just about bury me(not including the drifts)It's definatly a winter for the record books.Got my Diet Coke stash though...so bring on Round #2!!

(Keeping the pump warm...)


Snow drift:


Monstercycles:


Shoveling out..


Deck:












Posted using BlogPress from my iPhone