Friday, November 13, 2009

WDD Eve

World Diabetes Day. My first thought, as through most of my post-diagnosis days, is “this isn’t fair”. Why is diabetes affecting the lives of so many across the globe that we have to have a day for it? No fair whatsoever.

I am no longer in denial of my diabetes. And blogging has helped to nurture a positive attitude, but it also brings me close and up-front to the struggles that a lot of fine people go through. As I come to know more people and consider them my friends, I get mad as a hornet knowing what db does to us, on all levels of our existence. The want to strangle the monster until it disappears in a mist of vapor.

I have many days when I’m filled with optimism - and rightly so. Research and technology are advancing exponentially and I expect many more improvements yet to come in my lifetime. But I don’t expect a cure. And so here I am, stuck in the foreverland of being a person with diabetes.

I don’t know if it’s the stage of life that I’m in, or the fact that my mother is on the home stretch, or my job insecurity, but lately I’ve been feeling very nostalgic and thinking about growing up and times gone by. Some surprisingly poignant and lovely memories have crept out of the shadows, like berry picking on my g’ma’s farm, and ice fishing with my dad, and sneaking away to go shopping in a “big town” with my high school girlfriends.

Tonight on the eve of WDD, I remember my relatives who have died from TiDM.

The first person (that we know of) was diagnosed in 1945. Age 9. She died 7 years later. And several more died after that.

These people who shared my bloodline

- had to boil their glass syringes (as one of my TD friends put it, “the needles always develoved barbs on them so they hurt coming out as well as going in”
- had to put urine and a fizzy tablet in a test tube
- had to adhere to a ridgid exchange system, where there was no room for a pancake or brownie
- did not have ACE inhibitors to protect their kidneys
- did not have statins to control blood lipids
- faced across the board job descrimination
- had no publications, support groups and Online Communities to help with the difficult emotions.

There should probably be a whole other day of remembrance for those who died before the discovery of insulin.

But tomorrow, please don’t forget the people who bravely faced life in the early days of insulin. Let the strength of their collective spirit carry you forward when you face challenging times.

All of us, old/young; type 1/type 2; pumpers/pokers; newly diagnosed/veterans are in this together. The ocean refuses no river. Do something nice for somebody tomorrow. Trust life. Press on to a better future, for all of us.


Click here for lyrics to the song below. You won't be disappointed.



Thursday, August 13, 2009

Stranger to My Kin

Last weekend I went with my sister F and niece E to a family reunion in my home town. I agreed to go because F is close to a couple of second cousins who were visiting from out of state and I agreed to stick pretty close to my mom, in case she became disoriented.

TIDM is prevalent in my extended family. My g’ma had 11 siblings and my dad had 78 cousins. It was the generation of the children of the 78 cousins that developed db - no cases outside of that (yes, I still get anxious if my nephews ask for a refill on their pop).

So, there have been 34 of us diagnosed - the first in 1949 and the last in 1995. 19 are dead, with the rest of us in various states of health. Many of them live on the west coast so only myself and another man represented the db contingent of the family at the gathering. I have never spoken with any of these people about living with db. I don’t care to.

We were also celebrating my M’s 82nd birthday and had brought a big cake to share. F was cutting it and E and I passing out pieces.

My great-aunt L was there with her identical twin sister, B. B is obnoxious and outspoken and rude. She has never been a favorite of mine.

L has a grandson with T1, now 35 years old, in a nursing home. He had some major strokes a few years. ago and is essentially unresponsive.

So, I line the little paper plates up my forearm and head over to where L and B are sitting. The conversation went like this:

L: Now, who are you?
K: I’m H’s daughter, Kathy.
L whispers to B: She takes those shots too.
B: How awful. I can’t think of anything worse to have.
L: Neither can I. Terrible. Just terrible.
B: Why are you carrying that cake? You can’t have cake.
K: It’s my mom’s birthday cake.
B: But you can’t have any.
K: (smiles and contemplates smashing the cake in B’s face)
L: No, she can’t have any.
L: Did you know that they had to cut off part of G’s foot before he died? It was from the sugar.
B: Why, most people who have it are just skin and bones. You don’t look like you’ve missed many meals.
K: Yes, I am thankful that I have enough to eat when so many are starving across the globe.
B: Do you get those terrible pains in your legs like W’s kid?
K: No, I don’t.
B: It’s horrible. Just horrible. And to think you can’t have your mother’s b’day cake. Why are they making you serve cake you can’t have?

By then the conversation was starting to pierce my armor, like a knife twisting its way around my heart. I was feeling vulnerable.I I was close to tears and wanted to yell, “yes, I have diabetes but I’m not a freak”. Then it seemed to me that everyone in the room was staring at me, commenting to themselves that over there is one of “the diabetics in the family.”

No, I did not feel like sitting down and calmly talking about my treatment routine. B just wouldn’t get it. It would have been wasted effort. And I also didn’t want L to start talking about her grandson - do you think I need to be reminded about what db can do to a person?

But I wasn’t seeing the entire picture. B is a bitter lady, being very envious that her twin had a relatively comfortable life and B hadn’t enough to make ends meet. That sort of history can make your attitude spiteful and distorted. Maybe it validates one’s misery to focus on all the hardship in the world.

B: (pointing to my niece) Who is that girl? How did she get invited when she’s not one of the relatives?
K: That’s F’s daughter, E. She became a member of our family 5 years ago when F brought her home from China.
B: Well, I’ve heard those Korean orphans are all the daughters of prostitutes.
K. Maybe so, but she is very precious to us and we love her a lot.
B: Did they check her for worms when she got here?
K: (you’ve got to be kidding).

Well, by that time I sure didn’t want any cake, nor the variety of casseroles (made with condensed soup and attractively garnished with pimento) that were served later.

I said to F, “I need to get out of here”. and she agreed. So we took M back to the residence and I got in the backseat with E to work on old Beatle songs, which we practice in the car. She has tired of “Good Day Sunshine” and moved on to “Yellow Submarine”. Then she reminded me how much she dislikes the White Album.

F suggested we stop at Red Lobster, since we both were famished. We split a big platter of shrimp and crab, and the events of the day were blamed on small town living, old age, and the cake that “I couldn’t have”.

Saturday, July 25, 2009

Phantom Carbs?

I was in Target today, without a shopping list, and magically my cart became full. Who would have guessed that I needed that much stuff?

Right by the checkout stand was a big display of this:



SoBe Lifewater - "vitamin enhanced water beverage". See that big "0 Calories" at the top of the label? Cool. Sounds yummy. And on sale for $1. I took a bottle of the mango melon flavor.

I got home and was unpacking my stuff, and started to read the back label to see what vitamins it was enhanced with. Yes, I frequently make unwise choices with regard to self-care, but I always read labels. Maybe I'm just curious.



2.5 servings per bottle. 6 gm carbohydrate per serving. SAY WHAT? How can something have carbs but no calories. Carbs and proteins have 4.5 calories per gram; and fats have 9 calories per gram. If I drank the entire bottle, that would be 15 carbs - enough to certifiably treat a hypo.

What is it that I'm not getting here? Someone please explain, or else I'm going to have to call the 800# on Monday morning.

Saturday, June 20, 2009

CVS To The Rescue

I got to work on Friday morning and was going to have some shredded wheat for breakfast. I opened my purse, and, no insulin. Rarely does this happen.

We have no pharmacies within walking distance of my office. It's an hour bus ride to get back home. I needed all the time possible to prepare for a lunch meeting with some people from our corporate headquarters so could not afford to leave the office even for a few minutes.

I get good coverage from my basal insulin, and could easily do without breakfast. And probably lunch, also, for that matter. But, I did not want to draw attention to the db and sit there not eating anything and having to explain that not only do I have a medical condition, but I forgot my insulin.

Called a Walgreens a couple of miles away. No they do not deliver. No, they knew of no pharmacies that did.

Called a couple of independent pharmacies. Same story.

Called CVS and was immediately talking to the pharmacist. "Are you okay at the moment?" I told her I was fine and needed the insulin in about 3 hours for prandial coverage. "Well, normally, if an order is called in prior to 11 a.m., we'll guarantee delivery by 5 that afternoon. But this is a special case and I'll see what I can do and call you back."

Bless her heart. This dear woman phoned back in about 10 minutes and said she had contacted a private courier service that would get the insulin to me. I explaned that I knew Humalog was a prescription item but I was willing to go with Humalin, which is not. I gave her my credit card number and 30 minutes later the courier delivered the little paper sack. Our receptionist called me and said "Kathy, some man brought you something from the drugstore and he said to be sure you knew it had to be refrigerated right away".

So, the day was happily saved by the professional kindness of a stranger. And, there was no additional charge for the courier. On Monday I am going to call the CVS corporate headquarters and see just who should get the letter commending the people for good work.

I guess an obvious question would be why didn't I have the Humalog script transferred to the CVS pharmacy? Well, I had left a message at my pcp's office first thing. They returned it at 2 that afternoon, after the meeting was over. I know them well enough not to expect a time-sensitive response. Aaarrrrgggghhhh!

We work with the facts of the situation. And sometimes are pleasantly surprised.

Sunday, May 24, 2009

Time Thief

Last Monday, I had the pleasure of celebrating my oldest nephew's graduation from the University of Minnesota.



(Isn't he just impossibly cute?) Yes, his mother cried. Yes, I cried. I had such a big jumble of emotions inside me, I had to sit down on a bench for a couple of minutes.

Never, ever, did I expect to still be living on this day. And yet here I am, with 35 years of db under my belt. I work and support myself. I am a valued friend and family member, and contribute to my community. At present I have nothing to be p-ssed off about. Except the years that db stole from me. Or, were they the years I willingly gave away?

I remember the day that L was born. My sister called me at work, and after I hung up the phone I went into the supply room and cried among the sticky notes and rubber bands. Not tears of joy, but tears of rage because I mostly likely wouldn't be around to see this little boy enter first grade.

Their family lived about 4 hours north of here, so I saw L maybe 3 times a year. Sure, I sent birthday cards and Xmas gifts, but, I kept my distance because I didn't want him to know and love an auntie who dropped dead in her 30's. (Yeah, I know. Makes no sense to me now).

It wasn't until he came to Minneapolis to start college that I let down my defenses. I invited him to lunch. He had initially intended on becoming a pharmacist so it was no problem for me to test my blood in front of him. Each time we got together, our visits became more intimate and all the years of distance dropped away. I know that he and I talked about things that he was not willing to discuss with his parents. And I'm thankful he felt confident to share these issues with me.

So, off he is going to his first job as an actuary at the State Farm Insurance headuarters in Bloomington Illinois. And, I'm full expecting to be around to dance at his wedding. Yes, it's a strange feeling. But I'm okay with that.

Heck, why not really tempt fate and fully expect to be around to dance at this little gal's wedding?



No her mother did not forget to wash her face. E had been to a birthday party with a lady bug theme. Hence and red and black dots.



John Lennon said that "life is what happens when you're making other plans". Well, I guess I was planning to die. And now I'm planning to live. Don't know for how long. Let's just leave that open.

Friday, April 24, 2009

Ipod Shuffle

My favorite fun thing, the Ipod Shuffle, is once again circulating on the OC. I consider music to be a primary healing force in my life. So, then, why couldn't I find my Ipod? I have no idea where it is, but I did find what I think is the charger.........I took these 20 off my ITunes shuffle (and now that i've gotten going, will be playing tunes for the rest of the evening).

1) Purple Rain - Prince
2) Farther On - Jackson Browne
3) Midnight Rider - Willie Nelson
4) The Very Thought of You- Natalie Cole
5) Amelia - Joni Mitchell
6) Life in the Fast Lane - The Eagles
7) Tenderness - Stppenwolf
8) Fortune Teller - Robert Plant and Allison Krauss
9) How Can One Woman Be So Mean - Buddy Guy and Junior Wells
10) Smile - Tony Bennett
11) Carnival Town - Norah Jones
12) Travelin' Band - Creedence Clearwater Revival
13) I Want to Satisfy You - Leon Russell
14) Harvest - Neil Young
15) Brownsville Girl - Bob Dylan
16) Crazy Love - Cassandra Wilson
17) Sweet Baby James - James Taylor
18) Raining in My Soul - Guy Davis
19) A Case of You - Diane Krall
20) Somewhere Down the Crazy River - Robbie Robertson

Ok, so I'm old.

As far as rock videos go, I always watch this when I'm feeling low on energy - watch these guys rock the blazes out of an old hit

Sunday, April 05, 2009

Sprouting in the Dark

Last Christmas I received a flower bulb kit from one of my nephews.



I forgot about it until a couple of weeks ago when I was thinking about spring clothes and discovered it in the corner of my closet. I thought that the bulb was perhaps dead from not being tended to. I had to look twice when I opened the box, for there it was, sprouting and with green shoots coming out the top - in the dark! Mercy.



I put it into soil and the perfect spot on my windowsill. And here is what we have today.





Gosh, neglected, discarded and still the potential to bloom. I know, of course, that bulbs represent the dormant/resting stage of a plant. But still, this seemed like a miracle.

In March I passed over the 35 year mark of having diabetes. It still floors me. I took it for granted that I wouldn't make it much past 20 and was absolutely certain that I'd be dead before I reached the 25 year anniversary. ..........sigh.........and here I remain today. Since I started blogging, I wonder if things would have been different in the early years had I had an online community to talk with. After all, the only examples of pwd's were my relatives, most of them suffering from debilitating complications. I didn't know anybody who was living well with db. I only knew that at family gatherings the conversation would stop when one "of us" walked into the room. And then there'd be the hushed commentat that she "takes those shots too". My small town family practitioner knew nothing, and that was not his fault. When I was in the hospital he just kept increasing my single dose of NPH until the fasting glucose the next morning was within range. Sheesh - how did any of us survive?

I believe it is because life, all living things, have within them the greatest of potential for survival, just like the bulb in my closet. I believe that it's never too late for good control, and I believe that the possibility for renewal and healing are always close at hand. Sure, I gave up on myself many many times. But by grace or fate or fortune, was always able to rise back to the surface.

Spring has arrived here in Minnesota. The snow is gone, the sidewalks are dry and the trees will soon be showing new growth. Tomorrow I will wake up to a handful of oral meds, needles, lancets and the certain assurance that I'm still happy to be here.

Wednesday, February 18, 2009

Test Strips MIA

I sure hope I don't have to write too many more posts about the mail order pharmacy. This is getting irksome.....

In mid-January I had my primary fax them a prescription for test strips - 8 per day. I checked my account online that evening and it said "processing order". A week later it was still processing, and a week later as well. I called and the woman said she'd have to do some research. 3 days later I found out that under my new plan, the max that are covered are 6 per day, and since mine was for 8, they had "put it aside". Put it aside? Give me a break.

I squawked a bit and a supervisor said that since it was their error, they would overnight me the supply. I explained that there would be no one home to sign for it, but standard mail would be just fine. No problem.

Two weeks later, still no strips. I had a great day off for President's Day, and upon coming home in the afternoon noticed a cardboard box laying on the sidewalk near the door to my building. I picked it up to take to the trash, and, guess who it was addressed to? Why me!

Yes indeed, inside were 6 boxes of One Touch Strips, along with a large bottle of what turned out to be anti-seizure medication (which I've never taken).

Fortunately it was a warm day - about 30 degrees. I made a quick call to One Touch and they said it was okay if the strips had sat outside for a couple hours. Just don't use them until they've warmed up.

I was telling my neighbor about this and he said "great - you can say you never got the order and then have a bunch extra for free"

Why not? I sort of liked the idea and scrambled to come up with moral and rational reasons to do this:

1) I have had db for 35 years and deserve a break
2) Express Scripts is a huge profitable company and can esaily absorb the loss
3) I didn't ask for this to happen. It's UPS' fault
4) Had the timing been different, somebody else would have come along, opened the box and then tossed it
5) It would be really nice to have an extra suppply as a cushion - for sick days and such
6) Because I had not signed for the pacakage, it would be impossible to prove that I'd received it

I was still pondering the swhen a couple of distractions put it aside. The next day at work, ES called to see if I'd gotten the package. I reluctantly said yes, and added, for drama, that it was laying in the street. The woman said "well, once it's been turned over to UPS, it's out of our hands". Gee, lady. Thanks a lot.

I am not a model citizen. I smuggle pop into the movies. I have gone fishing without a license and exceeded the speed limit. I have stolen driftwood from a state park.

If the same think happens again, there is every chance that I'd respond differently. But sometimes it's just easier to tell the truth.

Monday, January 26, 2009

The Mail Order Pharmacy

In 2009 my wonderful HMO was dropped by my employer. We switched to Empire Blue Cross and a mailorder pharmacy which shall remain nameless. Last year my insulin co-payment was $15/vial and I could pick it up at a neighborhood drugstore 2 blocks away. This year it is $25/vial and has to come in the mail.

I began researching this back in November, when we were first notified. The conversations went something like this:

K: Hi, I'm going to be on your plan in '09 and have type 1 diabetes. How is the insuln shipped?

ES: How do you spell that?

K: Spell what?

ES: Whatever it is you wanted shipped.
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Well, I knew this was going to be a long process. I found out that insulin is shipped overnight in cold packs.

2nd call.

K: Hi. I,m trying to get something figured out here - I take insulin and know that you ship it overnight. I work during the day and I cannot receive personal mail at work. Whar are my options?

ES: We can leave it with a neighbor.

K: All my neighbors work too.

ES: We can leave it by the door.

K: It was below zero here today.

ES: Then you might want to be careful it doesn't freeze.

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

The next day I speak with my boss, who says that due to security regulations, I cannot receive personal mail at work. Maybe I should rent a mailbox.
Closest PO Boxes are 22 blocks away. Hmmmmmmm. don'tcrydon'tcrydon'tcry

A few days later I enlist the help of our company's Health Care Advocate. She says don't call ES at night as they are losers. We'll call during the day and ask to speak with a supervisor. I secretively dash into a private office at lunch and the advocate and I call, get put on hold, and soom I must return to my desk.

The next day I'm walking home from the bus and have a revelation as I go past the Fed Ex/Kinkos store in my neighborhood - maybe it could be sent there and they could hold it for me? Go in and ask the manager, who looks like he's about 12. "oh, I've never heard of that - I don't know if we can or not".

3 days later, stop in when there is a more "official" looking person behind the counter. "Sure, we do it all the time. Just have it set to youself, care of us - you can track it onlne and the day it's delivered stop by and pick it up." Whew. Problem Solved.

Call ES.
K:I would like to have my insulin shipped and held for pick up at a Fed Ex location - is that okay
ES: Well, we can't guarantee that.
E: Why not?
ES: Sometimes that doesn't work. I think you'll have to speak with the pharmacist, but they're not here at this time of night. We let them be home with their families.
K; What is a pharmacist going to be able to tell me about shipping?
ES: Just call tomorrow during regular hours.
===================================================================================
Me and the advocate call ES during the day and ask for a supervisor.

"Sure, we've done that before - just look your account up online, get the tracking number, and watch to see when it's been delivered to the store. Should work just fine?.

Well. I feel about 60% confident that this will work. One of my co-workers just told me today that they got 24 month's worth of her husband's migraine meds, when they were supposed to get 3. Luckly they were only charged for 3.

DB sure teaches us various aspects of problem solving. I feel sort of smug that I figured this out, and majorily pissed off hat I had to do it myself.

Sunday, January 18, 2009

Practice Vlog

I have been very curious about putting up a video here. (Up until last week I didn't even know how to take videos with my camera.) Becoming a blogger has taught me a lot of things, aside from those related to db. Cool.
This was taken last weekend, when we went to visit my mom in a smalltown west of Minneapolis.
video

Saturday, January 03, 2009

The Winter of my Frozen Face

I have enjoyed reading everybody's recaps of the closing year and hopes for '09.

My holidays were reasonably nice - quiet, simple and stressfree - just the way I like it. I thought that I was cruisin' along quite balanced, until a clerk said a bright "happy new year" to me on Friday and I burst into tears. Yes, it startled me too.

Annual holidays always bring many thoughts of fear into my mindset. A lot can happen in a year. A lot can go wrong with diabetes in a year. Fear shouts to me, "where will you be a year from now, Kathy? - Think of all those decades that you did't take care of yourself. They're bound to catch up with you, sooner or later."

For whatever reason, my image of fear is a Humphrey Bogart man, dressed in a shabby trenchcoat, fedora hat, smoking a cig and standing at the end of my sidewalk, sneering. In the recent years, I have developed some pretty good skills to ignore him. So he comes - let him stand there as long as he wants. Just don't invite him in for tea and cookies. He will soon get tired and go pester someone else.

This winter we've so far had 13 days where the temperature has dipped below zero. Last winter, our total was 3. A co-worker and I were talking about this and she remarked that it's harder to deal with knowing that we've got at least 2 months remaining. It would be a lot easier to tolerate if the end was in sight.

Well, the end is never in sight with db, and that's what's been difficult these last days.

So, in the meantime, we all do what we can. I put on my fancy high-tech face mask (designed so that your glasses don't fog up).



And, if necessary, my Mary Poppins hat.



No, there isn't much of a smile under there, but a certain satisfaction in the fact that I know I'll be comfortable at the bus stop.

And, there is also a satisfaction in knowing that if I do all that I can to take care of the db, then I will probably be here a year from now. Maybe with some amazing adventures to look back on.

Happy New Year to all my friends. May you be served with peace, joy, and fulfillment in 2009!