Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.


Friday, June 29, 2007

Running On Empty

I took a dive yesterday. Serious Dive.

I would imagine that most pre-menopausal (and some post) type 1 ladies out there can relate to this dive. A fairly common occurrence happens to me around the time of my menses. First there is the pre-mense spike followed at some point by the post-mense dive.

I took that dive. Downhill. Slippery slope. Off I go. Never-ever-again-land dive.

I spent all morning yesterday with an unresponsive high. 321. 322. 347. It is doubtful that the donuts helped with all that, but gimme a break will ya? That ten additional units of correction bolus really should have done the trick.

Then I went home to run. 147 pre-run. 20 minutes and a little over 2 miles later, 60. I inhale like 3 thousand glucose tabs (okay only 4) and keep a-rocking (running, but to the White Stripes). 6 minutes later? 38…..If I ate 3 thousand glucose tabs before, I had 8 thousand now (nah just 12). 4 minutes later? 27………..

I decided at this point (with whatever functioning brain cells I had left) that it was prudent to get off the treadmill. I don’t feel all that terrible at 27 (I’m not referring to my age here). I’m a little numb in my lips, in my hands, perhaps a little numb everywhere. But overall I’m doing alright. So I decide to wait it out. Plausible right? I just ate 12 glucose tabs four minutes earlier. I’m good.

I topped out at 139. Not bad for 16 glucose tabs within 10 minutes. I started my menses more than likely moments before I started my run, so my low-normalcy is here to stay for at least the next two days. And did I mention that I somehow gained NINE pounds OVERNIGHT? My body is so backwards.

Speaking of lows….currently 48

Before I reinvent the wheel here, I believe I may just excuse myself for that ill-regarded diabetic delicacy….

Glucose tabs.

Thursday, June 28, 2007

Lost My Cool

This morning I lost my cool. A little more than lost my cool. More like completely freaked out turned into evil death mom lost my cool.

I’m tired. My sinuses are icky. I have a burn on my arm that morphed over the past few days from just a burn to a case of cellulitis. I’m wiped out.

And Gracie, oh Gracie, my peanut little Gracie would not get dressed this morning. And it seemed the more I yelled, the louder I yelled, the nastier I became….the less inclined she was to do what I wanted.

Frustration mounted, mind spinning, head screaming (me screaming), I completely lost it. Scared the death out of my precious peanut I’m sure. I’m sure a ranting/screaming/raving 28 year old at 5 something in the morning is scary in and of itself. Add to that fact that the ranter/screamer is your mum, well, the scary factor just mounted 3 thousand times.

It turns out, the one thing she responds to, after I screaming/ranting/raving get her dressed myself, is a hug. A long drawn out, teary, I’m so sorry I’m so sorry hug.

And I feel like such a lug now. Such.A.Lug.

I lost my cool this morning, and now I’m trying to find the fortitude within myself to forgive myself for being an idiot.

Wednesday, June 27, 2007

A Lyrical Excursion

I’m in love with the White Stripes. Totally.

Thing is, though, I’m not so in love with their new album Icky Thump. I like the song, not so much the album. It is like they managed to fit all of their worst songs, ever, into one LP.

Amazing in that respect, I suppose.

One song I have been listening to quite a bit lately is Same Boy You’ve Always Known on the White Blood Cells LP. I always liked the sound of this song, but only recently (yesterday), while running, I actually listened to the words and I found even more to like about the song. It has a few great lines that had me thinking in that introspective running style that occurs every time I run.

“Pretty tough to think about
The beginning of December”

Initially this line really made no sense, until yesterday it clicked, DUH! God’s alive! It means the beginning of the end. I am always approaching the end of something, as static happenings imply nothing really happening at all… I am a beacon of change, whether I am desirous of the change or not is besides the point. When you think about it, it is pretty hard to think about change on the horizon that will come to pass regardless of any preventative measure you take.

“Same boy you’ve always known
Well I guess I haven’t grown”

This speaks to me more of perception than anything else. External perception of ourselves rather than our own perception and natural truth. Have you ever felt that way? You work so hard, change so much, and the only recognition or acknowledgement you receive is from yourself? After all this time, and too many impertinent and wholly pertinent struggles, I still haven’t mastered the ability to control other people’s perceptions and truth. I’ll let you know the trick…When I do….If I do……

As a side note, thanks for joining me on this entirely off-topic lyrical excursion….

The video starts off with a different song but shortly reverts to the song in question.

Tuesday, June 26, 2007

Duplicate Key

I know. I know. My drama surrounding the duplicate key has reached ridiculous levels. But….On the bright side. I am expecting receipt of said duplicate key sometime this week.

Several hours of headache and industrious “pissed off” letter writing later, that is.

And wonders that be, I of course received no apology, but I should assume that receipt of key is apology in and of itself? Or should I assume that receipt of duplicate key is more likely the Housing Coalition making sure that they “wipe” after they use the pot?

I’m thinking more along the lines of the latter.

Regardless, I’ll be doing some sort of inward (and outward) hootin and hollerin celebration once I have this hot little key in my hand. And then? I’m gonna hand it over to our PCA and move on with life.

Until next time. (God forbid).

Thursday, June 21, 2007



I was doing something nonchalantly in a way that was completely respectful of my spinal limits. And yet, my spine reacted in a way that could never be expected. It revolted in a manner that I find more than unsettling.

Bending Slightly. Pulling Lightly on the wheelbarrow of my sacral destruction.

So I went to bed, one shot of jagermeister and a few chapters of Gunslinger VII later, and woke up miserable at 3:30am. My back is not happy with me. Not in any sense of any word.

So at 3:30 am I propped myself up gingerly on pillows and read, until that time that I needed to be awake, up, and running for school and work.

It is 1pm now, and I am less than refreshed. 1pm and 1 lumbar strain later.

The doctor said that it is a lumbar strain, and I very possibly have disc involvement, but that my back is too swollen at this point to evaluate that accurately. My reflexes in my right knee are delayed (imagine reflex knock on my knee, and said knee stays limp) so he suspects something is going on there. So I am sent on my way, prescriptions in hand, to reconvene with said doctor in a week.

My delayed thinking as of right now is chanting: Vicodin is NOT a good alternative to back health. Not one bit.

Monday, June 18, 2007

Grieving a Dying Pancreas

So we have prior warning. Most families don’t get that. We sure have been lucky. And I have a whole heck of a lot to do.

Gracie’s post-prandials have been higher, so it is time to start thinking about:
1. The ins and outs of carb-counting (for a four year old)
2. Obtaining an additional glucagon pen, or three(one for my purse, one for daycare, one for home)
3. Stocking up on little juice boxes to help treat lows
4. Upping her prescription for test strips (currently at 7 per day, she’ll need up to at least 12 per day)
5. More ketone strips (Insulin with meals means her body is doing less of the work herself, putting her at higher risk for ketones and fast highs)
6. Training Day Care

Ick. Training Day Care. I barely feel comfortable managing her blood sugars, much less teaching someone else how to managethem. This is a whole new spiel, and although it hasn’t begun, it is closer than it has ever been before. For the first time, the hard truth of my daughter’s diabetes seems real. Lantus only, six blood sugar tests per day, and eating whatever without care may be something that is a part of the past one day soon. The real push and shove and “reality” of type 1 diabetes in my peanut is so close I can taste it. Ick.

Gracie’s endo outlined a plan to help prepare Gracie’s daycare for the rigors of mealtime insulin. The first is limiting her carbs to no more than 45 grams per snack or meal. The next is rigidly checking sugars before and after each meal. The carb limit should help prolong the amount of time that she has before she needs to begin mealtime insulin. That means before she starts insulin they will need to learn to:
1. Carb count
2. Carb count what the panut has actually eaten
3. Only offer up to 45 grams of carbohydrate per meal/snack
4. Have “alternative” no carb/low carb snackies to fill her up if she reaches that carb limit and is still hungry.
5. Have a “sugar free” juice alternative, or this little girl will have only juice for lunch and snack fairly easily.

I’ve scheduled in a training session for next Monday at 6:30am with her daycare, assuming that her blood sugars cooperate until that time. Gracie’s diabetes progression has been pretty slow (diagnosed in November 2006, so 8 months of basal insulin therapy only thus far) so I’m hoping that she doesn’t start running crazy high in the next week so I can get together everything I need by next Monday.

I’m not looking forward to this. And I can say, I’m most certainly NOT wearing my brave-heart today (wipes away tears). But we can do this.

I can feel a little crushed inside. And I can feel like my daughter is being diagnosed with diabetes all over again. My heart and thoughts can sink a little lower in this pressing grief. And that is okay. Because even though it seems weird to say that I am grieving the slow death of a pancreas, that pancreas is rooted pretty deeply in an incredibly beautiful and important peanut. And she is only four. I can feel struck down, and I can feel betrayed, and I can feel sad, so very sad.

And in the end, I’ll get up and do what we need to do. Because really, what other options do I have?

Sunday, June 17, 2007

It's Happening....

And I'm pretty bummed.

I know I said I felt more comfortable with Gracie beginning short-acting insulin and starting up all that 4-year old carb counting madness.

But that was my brave-heart speaking, and now I'm indulging my weak-heart. (It is impossible for brave-heart to be in residence 24/7.)

Gracie has had high post prandial sugars for the past two days. 201, 184, 168......

Her post-prandials have never been this high. She is waking up in the 80's and 90's, so adjusting her lantus won't fix these sugars. I'm waiting until they are consistently in the 200's. And then I will call her endo.

I'm pretty bummed about the whole stinkin thing.

To sum it all up: I'm not ready for this. She is four and she shouldn't be sick like this. I'm not ready for this. I'm not ready for this. I'm not ready for this. She's only four. This isn't fair.

This isn't fair.

Wednesday, June 13, 2007

Limitless Potential

I had the opportunity to be with a mom of a newly diagnosed child on the autism spectrum this evening. She was sad. There were tears. I distinctly remember my own confusion, fear, overwhelmedness, and pain at Sandis's diagnosis. I remember my own tears, and I felt this mother's tears as though I cried them myself. But I also had something to offer this mom. I have a different perspective having travelled this road post-diagnosis for approximately 8 months (I know, I'm no veteran but bear with me here).

Perspective is such a tricky thing. One moment in mournful desperation I have begged for something different and in the next I praise the Lord for the opportunities to learn and love that have been granted me. And in my perspective I had something to offer this mother. I had hope. I wish I could have i.v. infused this hope, but I could only show her what I have and what my family has gained post-daignosis.

Today I mourn for another mother's lost dreams. And I in turn celebrate that same mother regaining her dreams, albeit slightly different. Lastly I celebrate another child's capabilities being realized. Because that is what Sandis's diagnosis gave us. It gave us a key to Sandis; with all his joys and all his difficulties and all his potential.

Potential. All of my boy's limitless potential.

It is scary to think of potential when everywhere you turn post-diagnosis is a litany pertaining to assistance that will be needed for life.

But you know what? I need the assistance of insulin for all of my life to live my life, well, at all. My daughter needs the assistance of her braces to help her walk in a way that is fluid, safe, and effective. And who would say to either of us, despite our indefinite need for services, that our potential is limited in any way?

I hope that I gave this mother a way to find her own key to her daughter, with all of her beautiful joys, all of her frustrating difficulties, and most of all.....Her limitless potential.

Thursday, June 07, 2007

Everything, All The Time, All At Once

Oh man I don’t even know where to begin concerning the acceleration of certain events in my life!

Sandis, my awesome little six year old, lost his very first tooth yesterday. It caused a mini meltdown before said loss, but once the fear of losing something that has been very near and dear to his lip for many years eased, he was on the road to ripping that string that held said tooth to gum. He is now well on the way to losing tooth #2, and me? I’m broke because of it. I had Sandis put his tooth under his pillow last night, and me, being wiped out and tired last night forgot to put any money under his pillow. So this morning I spent convincing him to run to the loo so I could slip some cash in place of the tooth under his pillow before he caught on that I hadn’t done so yet. And the bugger of it all is this. The smallest bill I had was a TEN. I got QUARTERS. My son gets forty times the rate when I was a child. Lucky bugger. I’m just hoping now that I can re-establish the tooth fairy currency to something more like a FIVE……if only to save my wallet.

Gracie, on the other hand had her diabetes and neurology appointment yesterday. Things went really well, although I was blasted tired the entire trip. The neurologist informed me that although she is weaker on the right than the left overall, the degree of difference is not enough to be indicative of a neurological disorder. He recommended that we pursue care under a physiatrist to help coordinate her physical medicine needs and ensure that the course we are taking currently (thera-togs and SMOs) is the most beneficial for her needs. So next specialist we enlist the aid of, I guess, is the local pediatric physiatrist. He also recommended that we pursue neuropsychological evaluations. Seeing as how he is now the second doctor to recommend that, we will more than likely have that done. We have already planned on it though by applying for Mayo’s DANA program. Her diabetes is doing fabulous, with an a1c of 5.3 (luckyducky). I recently increased Gracie’s insulin and it was cool to see on a graph how big of a change it made. Also, the doctor wants us to think about restricting her carbs at daycare to 45 carbs or under, if only to reduce some of her post meal spikes (no meal insulin yet) and to help season the day care staff on the ins and outs of carb counting. I will beginning that at day care in the next few weeks, as soon as I round up the carb counting manuals and examine my schedule to see when would be most convenient to do some day care training.

Now on to HUD and lawyer stuff. I have an appointment with my lawyer this afternoon, and I had a conversation with an intern at HUD this morning. I’m feeling positive about the whole exchange and I hope that things start moving a wee bit faster than snail pace now that I have some representation and HUD is on the case. The intern I spoke to was so positive in his dealings with me. He will be calling The Housing Coalition today, beginning with a certain Kris Lieser. All I can say in that respect is I hope she eats her words in 10,000 different ways. And then…….I hope she carries some forethought with her in regards to future dealings with tenants.

Now I’m off to go be obnoxious. Apparently my forte is being just that…..

Tuesday, June 05, 2007

Found My Calling?

A coworker today gave me a flyer from Partners in Policymaking which had information on a "Class 25" which is a 9 month course that meets one weekend a month and teaches leadership skills in the developmental disability arena.

My coworker's comment to me?

"I thought you would be awesome at this."

And I would.

Forty people per year are accepted into this program. They commit to one weekend per month for 9 months and in return their meals are paid, their mileage is reimbursed, their lodging is paid for, and they are filled with legislative, legal, and political advocacy information that will allow them to return to their communities to be a leader in their local disability arena.

I feel as though the hand of God has nudged me and pointed me in this direction. I have been SEARCHING and I have been SEEKING an opportunity such as this.

If I am not accepted this year, I will be accepted next year, or the next. This is what I am here to do...To help people help themselves....And to help people help their children...

Just like I try to do everyday....

Friday, June 01, 2007

Okay....With A Higher Average

Gracie’s been high more often than not lately. Not ridiculously high, but her meter average has gone from around 125 to 144. And for the first time since her diagnosis, the average on my meter (141) is lower than hers.

I remember that first high. It wasn’t that high. It was only 177. But it felt like a slap. It felt as though the ground was jerked from beneath my feet. I never thought that feeling would go away. I never thought I could test, see her close to 200, and not feel like I was dying inside.

But I’m not dying. And she isn’t either. Her insulin needs are going up, but she still doesn’t need short acting insulin. I’m getting more used to seeing numbers that aren’t where they are supposed to be. I’m not as scared of starting short acting as I was when this all started.

I know that diabetes doesn’t detract from her. I know that diabetes doesn’t define her. I know that diabetes is just that daily thing we do.

And that’s okay.

Just okay with a higher average.