Resolutions

Well, I recently had my endo appt.

DRAMATIC MOVIE MUSIC: DUN. DUN. DUNNNNNNNNNN.

Surprisingly, I wasn't as nervous as I usually am, though the nurse said my blood pressure was a little elevated. I am quite a confident patient most of the time (I'm one of the young, healthy ones---so I have some good things on my side). But sometimes the fear of my diabetes and the judgement gets the best of me, and I begin to break down inside. This disease is overwhelming!

Anyway, the visit usually comes down to my a1c, because my other labs (liver, kidneys, cholesterol, etc.) come back normal.

Get this: my a1c has barely changed. I went from 7.5 to 7.6.

My doc was happy, on one hand, because my number hadn't progressed to something scary and ugly. However, he wants to see improvement, as do I.

As my first CDNE stated to a crowd earlier this week, people with type I diabetes tend to have more erratic blood sugars than people with type 2. We have NO insulin of our own to help us out when we eat that extra cookie or don't bolus correctly for that slice of pizza. We are the controller of our blood sugars, the warrior who fights for only himself/herself. And it's very difficult---every day! Every hour! Every minute. Diabetes is always with me, and when I want to forget about it, it rears its ugly head. Good times...

I know I need to make several improvements in my diabetes self-management. In fact, I made a list for myself the day before my appointment. (See doc, I'm so good. I have a plan to action!) I want to share that list with you all, as I feel that one, posting it will empower me to do better, and two, I want to be honest with my readers, showing you that diabetes is raw, real, and tough. But, I believe in the power of being positive, so that's what I'm doing. I'm doing something. Because if I let the fears of complications, the realities of the massive role I have in my own care, and the worries of what could/might/will happen get to me---I will not be productive. And that's not helpful or healthy.

Here's my list:

• Get better control of my diet, exercise, and thus, my blood sugars before the holidays start at Thanksgiving (which is, gulp, just a few weeks away). (You see, in November there's Thanksgiving, in December there's Christmas, and in January and February are several family birthday events, including mine). There is no time like the present to do the right thing, to make good choices. Here's what I plan to do:
• Drink more water. I'm thirsty all the time. Feeling dehydrated is making me sluggish and irritated, and it's not healthy for my bladder (which aches when it's deprived!). Yesterday I had some hot, herbal tea (with no sweeteners added)--and it was good!
• Eat more veggies. I prefer fruits---probably b/c they are sweet---haha! But I know that veggies are easy to prepare, have low carb counts (if they even count), and offer fiber without lots of calories. Last night I made an egg bake with a potato crust, and I threw in an entire onion, green pepper, and half a bagged of chopped, steamed cauliflower. Go me!
• Vary my workouts. It's easy to get in exercise ruts. I'm going to try once a week to do something different---even if it's just a small difference. Yesterday I walked a different route than I usually do. I figured it was good for my baby to see new things, and it forced me to concentrate more on my exercise and the different terrain I was walking.
• Stop the sugar addiction. I'm a girl who loves dessert. Unfortunately, I have found myself eating dessert three times a day! I made these (semi-healthy) chocolate chip and walnut cookies from whole wheat pastry flour (new recipe). I was eating half or a whole cookie after lunch, in the afternoon, and after dinner. What the heck? I will eat dessert once a day---but three times a day is NOT healthy! Two days ago I made an apple crisp (organic apples, lots of whole grains like oats and Kashi cereal, and little added sugar) for dessert. I pair it with natural vanilla ice cream. The dessert is filling due to all the fiber, and I am sneaking in a serving of healthy whole grains and fruit. Then I put all the extra in the freezer so the crisp isn't looking at me and tempting me throughout my day.
• Get back on my CGM. I dread the BEEP BEEP BEEP VIBRATE BEEP BEEP that occurs at night. Yes, the CGM is doing it's job. Good for it. However, it drives me nuts, and my poor husband's sleep is disturbed. However, I am much more aware of my diabetes (which is good and bad) when I'm wearing the CGM. Plus, I should be honored that my insurance covers the CGM supplies and take full advantage of it. (I'm trying to convince myself---can't you tell?)
• Take a refresher class. My insurance won't pay for a diabetes education class (though they pay the $700 for sensors....go figure that one out...) or for me to see my dietitian. However, I heard that Medtronic, maker of my pump, is offering free classes. I should go. The more I learn about diabetes, the more I discover how much I don't know.

These changes seem dramatic, but really, some of them are so easy! Walking a different route doesn't take any extra time. Eating more veggies is inexpensive (just buy frozen) and quick. I have the CGM supplies---I just need to take two minutes and hook it up. I can do this!

I think the speaking engagements have me more vulnerable to my own poor choices---which is a good thing! I need renewal and refreshment when it comes to diabetes. I know I will never conquer diabetes---because it will always be there to throw me a curve ball---but I can learn to take on a healthier attitude so that when a surprise comes, I can more quickly and effectively deal.

I challenge you to make a list of the changes you need to make, why you want to make them, and then just DO. All the planning in the world won't change your life. Make like Nike and "just do it."

Funny Moment

Last night I went to my first speaking engagement---a diabetes conference held at my local hospital. Before my 5:30 slot, I walked around the room and spoke with vendors. I spent some time at the Medtronic (maker of my insulin pump) table. The representative said to me, "Just to let you know, there is an art contest to see who can make the best pump skin." She showed me an example of a pump skin---one featuring a photo of her two children.

I was a bit puzzled because in no way did I indicate I was an artist.

The woman then continued, "It's for people up to age eighteen."

She thought I was eighteen or younger!

Woo hoo!

I used to DREAD being seen as a child. When I was twelve, I was still offered crayons at restaurants! Each time I was humiliated! Then when I started teaching college English courses, my students couldn't figure out how someone who looked like a teenager could possibly be their teacher. But now that I'm twenty-seven, being told I look eighteen, well, hey, I have a disease that often ages people dramatically, so I'll take the compliment.

(In case you are wondering, my speaking engagement went fairly well. My topic was "Powerfully Positive" where I outlined my diabetes diagnosis story and then tips on how I stay positive. I stuck around for Q and A after which was interesting. My audience consisted of about thirty people, none of whom had type I diabetes that I know of. It was a cool experience, and I'll be speaking again to a much bigger crowd---gulp---in two weeks).

Step Out!

We recently had the opportunity to participate in a Step Out and Fight Diabetes Walk at my place of employment. We signed up on Monday (uh, yeah, a little last minute) and walked on Saturday. Not much time! But thankfully our friends and family helped us raise $250 to support the cause.

It was very exciting to see the fifty or so participants gathered to raise money to fight my disease. (Yes, it's personal!) The day was chilly and very windy---but we pressed on, walking the course twice, laughing, and pushing our baby in her stroller. She was quite content, and the last few feet of the race consisted of her "walking" by holding on to our fingers. How exciting! Her first diabetes walk! :)

I've said before that I am not living for a cure. I'm living for today---and that means living with my disease. However, I am hopeful that someday there will be a cure for people like me. Until then, I'll just keep doing what I do: living in this moment.

I'm furious and doing something about it!

See my letter below. I'm ticked! I'm disgusted! And I'm not going to take this nonsense from anyone.


October 28, 2009


Dear Dr. K______ and Staff:

I visited your office for the first time on August 12th, 2009. The office was clean, the staff was pleasant, and I was seen in a timely manner. However, that is where the positive points end for me.

At the end of my exam, Dr. K prescribed a drug called Metanx for me. I took the prescription to my local pharmacy immediately following my visit. I learned that my insurance company would not cover the medication, which is considered by some to be a supplement, but I could have my doctor write a letter of appeal in an attempt to have the medication covered. So I called your office and requested that the doctor take a few minutes to write a letter for me. Without insurance coverage, the medication cost $1 a day. Add that to the costs of my insulin pump supplies, my insulin, my Symlin, my pen needles, syringes, test strips, batteries, and other supplies, and the Metanx cost just isn’t in our budget. I was told over the phone that a letter of appeal would be no problem at all and that the doctor would send it in.

I waited four weeks from the time of my appointment and called my insurance company to see if the drug was going to be covered. They stated that they didn’t have a letter of appeal on file. I figured the insurance company had lost it because all of my diabetes medical team responds quickly to patients’ needs, so I called your office and asked for the letter to be re-sent. The woman on the phone told me that my file was still sitting on the doctor’s desk, in a large stack, and that he was very busy, only working two days a week. She assured me she would bring my file to the doctor’s attention that week and would call me when the letter was completed.

I called back two weeks later, and the file was still on the doctor’s desk. I was told again that Dr. K was very busy and that he had a large stack of files on his desk to respond to. I was also told to expect a phone call that same day letting me know the status of my letter. I was not called.

I called back this week, and I was told the same thing----that the doctor was too busy and that I should expect a phone call soon. Tired of the empty promises and procrastination, I requested a copy of my visit with the doctor so that I could have my GP write the appeal letter. I was then told that my original appointment had still not been transcribed (from two and half months ago!) and probably wouldn’t be for some time. So now not only can I not get a letter from the doctor, but I cannot get a letter from my GP due to lack of proper paperwork.

I’m disappointed in the facility's lack of timeliness and respect regarding patient care. My foot health and my diabetes cannot afford to wait for the doctor to take five minutes to write a letter for me. Furthermore, it’s very disrespectful of the staff to make empty promises to patients. I do not appreciate being lied to. A simple phone call and appropriate, responsible patient care should be standard in your office.

So now I have a few choices that will cost me even more money: visit another doctor to obtain a prescription and letter of appeal or pay the $1 a day cost of the medication. Of course, I could do nothing at all, but I’m sure as a diabetes professionals you realize that option is foolish and dangerous to my health.

I have been patient and vigilant regarding this situation; however, I will not be returning to your facility again. I value my time, money, energy, and health too much to accept disrespect, procrastination, and empty promises.

I expect that my co-pay of $25 will be refunded to me within fourteen business days from the date your receive this letter (which will be October 29th). I will be using my money to see another doctor. Should the money not be returned to me within fourteen business days, I will address the staff in person.



Rachel
(address)

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EDITED TO ADD:

So I put this letter in my mailbox today. Around 2:50 my phone rings, and it's the doc office. I don't pick up because I'm just too angry. An employee leaves a message saying the doctor sent the letter in to the insurance company today!

I dash out to my mailbox to retrieve my letter and the mail carrier is at the foot of my driveway and has just put the letter in his truck. He nicely gives it back to me (whew!) along with my mail.

So I spent that time and energy writing that letter for nothing....well, except for some mental relief.

Letter writing can be very powerful and if done well, can produce desired results.

But this time, I guess it wasn't necessary.

it's that time again....

Tomorrow I have my labs done. Then next week I go see my endo.

It's far enough away right now that I'm ok. But when that date rolls around, and when I stroll into that doc office, I know I will face dread, fear, and annoyance. Not a good attitude is it?

I've been off my CGM for over a month. It feels good being free of the extra equipment taped to my body AND the DO DO DO (beeping) from my insulin pump if my sugar is too high or too low.

I just want to be normal.

I want to be free.

Mexican Pilaf

I LOVE Mexican food; however, it's all too often full of fat, calories, and sodium. I walk out of Mexican restaurants bloated, thirsty, and nauseated. So why do I keep returning? Um, why do any of us eat the things that we know are harmful and unhealthy? Because it's good in the moment.

When I get the craving for Mexican and know it's best to avoid blood sugar spikes and drops as a result of traditional Mexican food, I make this recipe.

Rachel's Mexican Pilaf

Ingredients:

• 1 pouch of Kashi's Pilaf, prepared as directed



• organic salsa



• 1 can of black beans, drained and rinsed



• 1 can of organic corn (drained and rinsed) or half a bag of organic frozen corn, defrosted



• low-fat cheese



• low-fat sour cream



• tortillas or taco shells (if desired)

Directions:

1. Mix pilaf with desired amount of salsa, beans, and corn.



2. Serve on top of lettuce or in tortillas or taco shells.



3. Top with cheese and sour cream.

Not only is this recipe easy, it can be made in less than a half-hour, requires almost no preparation, is inexpensive, is vegetarian, and my eleven month old baby loves it!

Enjoy!

Teaching Myself

I'm driving home from the library the other day (ha! returning my Gorgeously Green book which was overdue) when I see a man slowly making his way down the sidewalk. This man seemed ageless to me, nothing indicating to a passerby if he was young or old. I'm not sure if he was struggling or if his walk, which was awkward and seemingly labored, was something natural to him. Maybe he has lived with some sort of condition his entire life? Maybe he was recently injured? What was this ailment that was clearly evident in this man's unsteady stride?

Interestingly enough, just the day before I had seen a different man slowly making his way up the side of a very busy street. I ran my errands and about an hour later headed home, taking the same street. The same man was now traveling, slowly and unsteadily, in the opposite direction, this time a grocery bag in his arms. I admired his dedication and persistence.

Today I had an interesting conversation with a friend of mine who has had lupus for four years. She explained her disease to me and said that some mornings it takes her an hour to work out her stiffness; sometimes she feels like she's an old woman. I listened. I am also thinking about another friend, one who has MS. We once had a conversation about the fear of living life in a wheelchair---the loss of ability to do the things that come naturally right now, and we asked one another, "What kind of life is that?" With my own disease, I recognize that there is a risk of amputation or of severe nerve damage to my body, including in my feet and legs.

Nothing is certain with these diseases. They are tricky. They are predatory. They are scary.

And the fear of losing the ability to walk or to walk well is a reality for my two friends and me. Maybe not next year or even within this decade, but we could be like the man I saw, hobbling along, each step a battle.

I wonder if some day I will be forced to slow down. To stop multi-tasking. To cease constantly thinking about "what's next?" Will my disease teach me new lessons, as it always does, about what is really the essence of life?

One day I may not have the option to text while pushing a stroller, to vacuum while holding a twenty-something pound baby, to dart across my university's parking lot in record speed through pouring rain.

Today I have tried to make myself slow down and do one thing at a time. I have shut off the television, avoided the Internet for mindless entertainment, and set my cell phone aside so that I wouldn't be tempted to text. Technology is my best friend and my greatest distraction.

I want to, one day, look back at my life and say that I lived it well. I lived with purpose yet also with spontaneity. I don't want my daughter to remember me as the mom who was always carrying her cell phone, always plugging away at the keyboard, always looking over her head at the television. These things do not bring true fulfillment, joy, or satisfaction.

I hope that I can teach myself to live carpe diem style before my disease decides to teach me. I might someday be that person struggling down the sidewalk, but I hope that perhaps I'm doing so with joy and peace, not with desperation, despair, and disappointment.