This Week So Far

I didn't weigh myself this week. Not because I don't want to, but my brain has been busy. You see, I got a new Continuous Glugose Montior last week, and got my training & "installation" last Friday.

Its going well. Aside from the fun of announcing "BEHOLD MY CYBORGIAN GREATNESS" to people in stentorian tones before showing it to them (and it IS Tons of fun), I'm having myself being kept busy by keeping an eye on it. I have to calibrate it every 12 hours, and I find myself constantly curious as to how its measuring up (literally) compared to my blood sugar meter.

My control has ALREADY tightened. Accountability - WHO KNEW?!? Seriously, its making me think about EVERYTHING I put in my mouth - And if I don't on the front end, I sure as HELL do on the back end! I'm seeing the results of what my actions are, and sometimes what they aren't. Its endlessly fascinating . . .for now.

Also, this week the bathroom with my scale has a visitor sleeping outside it.

I'm still doing good. I've done Yoga 4 mornings out of 5 so far. Took Wednesday mornings off for the past 2 weeks, and this past weekend was my monthly cycle, on which one isn't supposed to do yoga - a point which I actually agree with, having tried it one month to my detriment! Nearly passed out from blood pressure fluctuations. Bad idea. Yogis know their stuff, and aren't as anti-women on that one as I'd originally thought. Walking has been going good, but I found quickly that I really - NO REALLY - need my sneakers to do it without the pain. Docs aren't walking shoes. THE END.

So, so far so good. Haven't been food nazi-ing - yet. Planning that joy-filled step for after the holidays.

Sudden Changes

It never ceases to amaze me just how quickly my body responds to my making good choices and doing what's healthy.

Its only been 2 days of exercising, and I"m already seeing a shift in my blood sugar and my blood sugar patterns. For those of you who aren't familiar with Diabetes, what I'm referring to is first the actual number on the screen of my glucose monitor, and the second is the wave that would make if I were to graph an entire day of readings.

My blood sugar has already dropped. The pattern has changed to require a small snack in the morning.

That's after only 2 days.

My body wants to be healthy, if only the rest of me would come along for the ride.

I think I'm finally on board with myself. Quite possibly for the first time in my life.

Moving

Moving is scary. I'm not talking about packing up your stuff into little boxes and changing house. I'm talking about getting up off your butt, and well. . .moving.

I'm not 100% sure why exactly. It just is to me. I can control EVERYTHING from sitting on my butt. I've made a life long study of it. The problem is that it will be an all too brief lifelong study if I don't stopy this study and get off my butt and MOVE.

I like yoga, but its scary too. Its moving in one place. I have to balance, which is tricky. and I have to stretch which is tricky and ouchy. I still like it when I find myself in the pose, and it feels like I'm doing it right and I just breathe. For that moment, I like yoga.

All other types of exercise are CRAP. I hate them. They scare me, to the point where I found myself dissociating during my walk today. That's a new one, incidentally. Never used to do that - that I remember anyway.

I didn't used to be like this. Once upon a time, I was an active and energetic kid. Then I was diagnosed with diabetes, and my mother panicked. She instilled in me a fear that if I was active, my sugar would drop and I would die. Life being the utterly ironic scenario that it is, I'm having the opposite problem. If I don't get off my butt and move more, I will die WAY too young.

So, I'm moving more. I'm getting up and walking around the building on my breaks. Not outside. Its December and I'm in DC - too f-ing cold! But inside, in the nice wide, flat hallways, I'm walking more.

Its terrifying. Its tiring. And I can't even do what other do and reward myself with something tasty. . .

::SIGH:: This is going to be okay. I know it will. I've just got to get over a few mental hiccups, and everything will be fine.

::Grabs big shovel, places it in wheel barrow:: Time to shovel some MORE emotional shit! Oh joy, oh rapture, oh BARF!

AND SHE'S OFF

So, I've made an executive decision!
Well, its a decision anyway. I'm bringing everyone who keeps reading this along for the ride on my weight-loss journey! Aren't you THRILLED?!?!?!

You are the lucky ones who get to hear my griping & bitching about how much I hate exercise! You are the ones who get to hear what my weight is on any given week! You get to come with me on the joy-filled ride of doom!

Seriously, I'm probably going to post once a week,and report how the week went for weight-loss. Just to keep myself honest on the weekend, I've designated Monday as my weigh in day.

Today I weight 235.5 lbs according to my bathroom scale, which is pretty accurate (or so I'm surmising as it matches my doctor's scales).

My plan for this week:

AM Yoga for Weight Loss (light 27 minute stretch)
Lunch time walk - NO EXCUSES UNLESS DEAD
Afternoon break walk - optional depending on energy level & blood sugar.
PM Yoga for Weight Loss ( another light 27 minute stretch)
Plenty of sleep.
at least 3 liters of water a day
No more than 1 serving of any given meal (this is MUCH harder at dinner time, which is my low point of the day).


So, that's the plan for this week. We'll see how it goes.

I'm not doing much more than portion control for diet at this time, as a dietitian has said that I'm doing okay with choices, given the restrictions in place (i.e. low potassium, low protein, low carb, low fat). I need to get active & control my portions.

So, here we go. . .

That went well. . .

I'm a bit tired, and might be a bit rambly, but here goes . . .

Yesterday I woke at 5:30AM and woke my partner to drive me up to the Transplant Center for my intake appointment. We ate breakfast and consumed large amounts of hot coffee while I packed enough stuff for me to do while waiting for various doctors for 4 hours.

He fought with the cars while I stood in the cold. One car is old, and we weren't going to take it, but the newer car was out of gas. So, we hopped in "Sweetness" (his name for his little blue Saturn), and off we went in rush hour traffic to Baltimore.

We did okay traffic-wise. We made it with only one hitch. For those of you who might read this who are actually going through this process in the John's Hopkins Transplant Center, the city of Baltimore in its infinite and ineffable wisdom has for some reason removed the street sign marking North Caroline street. That, of course, would be the street that the TC is located on. So, we went past it, turned aroound and finally found it. We parked and went in.

This is a BIG place. There are lots of people in it, and from my slightly panicked haze of perception, everyone of them knew exactly where they were going - and we didn't! We managed to find our way, and I got registered, and checked in. Some very nice woman took my vitals and led me to room D-1, and we sat.

First, the nurse came in, and she was nice. Her name was Beth, and she was very comforting and very encouraging. Then we met with the dietitian, who wasn't a total jackass (That's 2 now that I've met who weren't. Usually they tell me to lay off of the chips & dip - that I don't eat). After that the social worker came in and helped us figure out how much some of this post-op meds might cost. That was a very VERY sobering moment. We can do this, but its not going to be cheap.

And then we waited. . .

And waited. . .

And waited some more. . .

Then I saw the 2 doctors in rapid succession. They were both very nice, and explained the process to me in as great detail as they could.

The long & short of yesterday:

I'm not sick enough at this time for a kidney.
I AM an ideal candidate for a new pancreas, once I lose some weight.

They want me to lose weight & call them if I've done so in 6 months or so.

So, I'm going to start exercising again. I'd stopped b/c of being depressed about not being able to get below 215 no matter what I did. They can work with me at that weight.

I went to bed at 7:30pm last night. I slept for 12 hours and woke exhausted. Right now, I feel crammed full of information, and just plain emotionally drained from this.

But this was a good thing. There is hope. Its no longer just a hang-in-there-until-your-body-gives-out-and-you-die game. I might be able to get past this.

That's more frightening than I'd thought it be. Its also quite thrilling.

My mind is still reeling a bit.

Doctor's or Extortionists?!?!?

So, I got my letter. Naturally, there is a laundry list of things that they want me to send ahead of the appointment.

Which means I have to get off my butt and get a primary care doctor. I haven't had one in a couple of years, since a) I'm on a PPO and don't NEED one to coordinate my care (I do that myself, thank you), and b) I don't get that sick (knocking on wood like CRAZY) except for my diabetes & kidney problems - for which I already have doctors. So, long story short - I didn't have a PCP for a while.

I just called one doctor's office. His practice is to first have a "get to know you visit". Then a "blood work" visit. Then and only then will he perform a physical.

That - to me - is bullshit. I simply don't have time for this crap. I have an appointment on 12/9, and I have work. Oh, and I have NO leave left. Also, I have to pay for these visits, grant you a copay, but money is money, and I don't particularly like it leaving my pocket!

When did doctor's become hobby extortionists?

Why?

Most people upon finding out that I'm beginning this process seem to see only the positives.

Then there are others who look confused and say "But your so STABLE! Why would you do this?"

Well, here's why.

Today after a couple of really steady good blood sugar weeks, my blood sugar began to inexplicably climb this afternoon. Last check was 452. I think it might have been a kink that I found in the tubing that leads from my pump to the site at which it enters my body, but until I check again I simply don't know for sure. What was a pretty good day has now become an exhausting grind - because of mechanical failure.

Yes, I'm currently VERY stable. However I've never lost sight of the fact that my stability is an illusion built on a piece of machinery. A piece of machinery that can and does malfunction, and that takes a minimum of overnight to replace (or longer, as was the case when I had a malfunction during a series of severe snow storms).

I'm risking what stability I've got for a chance at living a life that doesn't contain kinks in the tubing, mechanical malfunctions, or such suches.

We'll see how it goes. . .

When "Yes" is hard to take.

Last Saturday, I had a message on my home phone answering machine.

I have an intake appointment at the transplant center for December 9. Letter with details to follow.

I took this news in stride - at first. Then stood in the middle of Michaels' Craft Store and shook, having my own personal version of a panic attack. Shaking, babbling about how illogical this reaction is to my partner.

The wise being that he is, he agreed with me and held me.

I'm doing okay now. It just seemed soon. I know this is a good process. I know that this will lead to good things. I think that part of this reaction is that I was expecting to be told "No", and instead was told "Show up here, at this time".

Sometimes "Yes" is much much scarier than "No". "No" is an end. At that point, you have your answer. In this process, "Yes" continues the process. Its not really an answer, so much as a completion of a single step.

Guess I'd better get used to waiting.

Waiting

I'm waiting to hear from the Transplant Center.

I hate waiting.

What if my insurance says no, and they just don't tell me? What if they just don't ever call? What if they look at my paperwork, and just decide not to bother?

Waiting sucks.

Sent

So, today after much hemming and hawing, I decided to read the packet sent to me by the Transplant Center.

And promptly panicked when I read that I had to have it there within 14 days of receipt. Of course, I went through the "WAAAAAAAAAAAAAAAAAA" stage. Then the "WHAT IF I'M NOT READY FOR THIS" stage.

Then I pulled up my big girl panties and finished reading the d'md thing.

Its still scary. I shook as I filled out the forms. I shook as I dialed the fax number, and I shook for a good half hour after I'd hit the sent button. (the fax went through, I checked).

Today, I officially took the first real step on this path. Its terrifying and wonderful all at the same time. I have equal measures of fear & hope. Fear that I won't be accepted for this. Fear that I will be, and that everything in my life will change because of it. Fear that I'll do this and it won't help or matter.

Hope that I'll be accepted and everything will go well, and that my whole life wil change because of this.

No matter what, the next step is out of my hands now. Its up to the nice people at the Transplant Center & my Insurance Company.

We'll see. . .

Scary

Yesterday afternoon, my packet arrived from the Johns Hopkins Transplant Center.

Its scary.

Its not scary because of what's written on any of the information. Its scary because if this happens, and is successful, a core part of my being will go away. I've tried explaining this to others - without much success. Most people only see the bright side, and that's a wonderful thing don't get me wrong.

Its just . . . So much of my life has revolved around the fact that I'm a diabetic. Some of my choices regarding life have been shaped by this fact. Big choices. Choices that I would not have made otherwise. Suddenly, to have all those years of life, all those choices made irrelevant by a surgery - that's staggering to me. I'll admit, I'm a bit angry on one level that this couldn't be contemplated earlier in my life. Who knows what could have been? I don't, and I don't plan to dwell in this place, or let this anger take root - but its there, and to deny that would be just plain foolish.

So, I'm a little angry. And I'm a little scared. I'm afraid of what might be. If I'm not a diabetic, what will I be? Who will I be?

I don't know. That's what's scary.

So why ORANGES?

So, I admit it. "Lusting After Oranges" is a strange name for a blog about renal failure.

Or is it?

If you have ever lived with, know, or are even remotely acquainted with renal failure, you may already know that potassium is one of the things that has to be limited drastically in the diet of a renal patient. Food contains potassium. Its just a part of life. Admittedly, some foods are higher in potassium than others. Leafy greens, fruit, nuts, legumes are all high potassium foods.

Oranges are one of my favorite foods. I LOVE oranges. I haven't really been able to enjoy them for a while now, because they contain more potassium than I'm really able to have in the course of a day's eating. Or at least they contain more than I can justify spending on one food.

For me, oranges have come to symbolize something that I lost. When I was little, my mother would put a huge naval orange in our stockings at Christmas time, and tell us stories of how when she was little, that was the only orange she'd have all year. She'd always be so happy remembering her own childhood oranges.

When I was 10, after I'd been diagnosed with diabetes, that was the first time I noticed that my life had truly changed. There was no orange that Christmas. My mom told me that the nutritionist told her it wasn't a good idea for me to have that much natural sugar (this was back int he dark days of diabetic nutrition when all sugar was kept away).

Then time passed, and research came out showing that it was okay for diabetics to eat oranges. I was the happiest camper on the block!!

I can't eat oranges any more, and sometimes, I look at them in the grocery store the way a starving animal looks at prey. I want a freaking orange.

If all goes well, maybe someday I'll be able to eat one every day.

In The Begining

There was BLOG!

Seriously, this is starting at the middle of a story, so let me back up and fill you in.

26 years ago, the week before Halloween, and only a few days after my 10th birthday, I was diagnosed with Type 1 diabetes.

From that time until this, I've been told many things. I've been told that I'd never have a child. I've been told that I'd be blind by 30. I've been told that I'd die young under horrible wasting circumstances.

Well, my only child - a girl - just turned 17 not so long ago, and is as healthy as a horse. I've just turned from my book I was reading - with my remaining eye. So, I guess I'm not willing to believe that last one so much either.

Two years ago, I was diagnosed with Diabetic Renal Failure. My kidneys at that time were operating at 50%. The doctor said scary things like "Dialysis" and "Transplant". Very scary things indeed.

Last Friday, I went to see my new nephrologist (kidney doctor). My old one had moved to San Antonio to be near his grandchildren. Now, please understand that I'm not fond of doctors, despite my long acquaintance with that particular sub-species of human. They make me nervous. They sit there and say "Hmm" way too much and then tell me something horrible, send me for more tests, and then tell me not to worry, that it'll all be okay in the end. Sure, on a cosmic level, I'm positive that it will all be okay in the end. However, I'm never quite as trusting of doctors as I maybe should be. Maybe its because I realized way too early just how human they are.

This doctor was . . .different. She treated me like I had a functioning brain for one. That's a good way to start. She listened to my questions and concerns, and actually addressed them. Good good, this was a good way to continue. Then she said something that was wonderful and scary at the same time.

She told me that I'd had no further loss of function in 2 years. This is a wonderful thing, because most renal failure patients at best lose 3% per year. So, I should have been down to 44% and I was still sitting pretty on 50%. This is a very good thing. Then she mentioned the idea of getting a pancreas transplant. She broke down the progression of diabetes and the way it affects the kidneys in a way that I was able to finally grasp.

In sum: My stability was miraculous, and it was all but guaranteed not to last.

So, at her recommendation, and after talking to my Beloved this weekend, I called the Johns Hopkins Kidney-Pancreas transplant center. I spoke with a nurse. After listening to what my doctor had told me, she recommended that I start the application process. She gave my number to an intake coordinator, and they are sending me a packet of information that I'll have to complete and return to them. At that point, they'll check with my insurance company, and see if I stand a hope in hell of having them pay for it.

And that brings me back to . .. THERE WAS BLOG!

I've decided to blog about this. The process, the emotions, all of it. Partly to give myself a place to vent.