Wednesday, September 16, 2015

Where are you, Abi?

His eyes were hazed and unfocused.  Clearly, mental illness, drug addiction, or alcoholism had him in its grips. My "job" at the soup kitchen that day was to go around with pitchers and refill drinks. Each time I passed him, he waved me over.  "Come here," he said in a thick African accent, smiling broadly. Each time, he quietly said something. He wanted more spaghetti. I have pretty eyes, a nice smile. He wanted a hug. I hesitated briefly. He was none too clean. I asked his name.  Abi (aa-BEE).

Later, he got up to leave and came back to our drink station. He put his arm around me and said to someone, I don't remember who, that I was now his sister. He walked out into the world where he lived, on the streets. I think of him often: how he came here, why he was on the streets, did he have family? Of all the people I encountered that day, his openness, his insistence on interacting with me burned him in my memory.

One other client struck me hard. A young girl sat quietly eating her lunch.  At her side, was a stroller holding, I'm guessing, her three month old brother. Her five year old sister sat across from her, her backpack still strapped on. Where were their parents? Who leave a three month old with a girl looking to be no more than eleven years old? Who sends children to eat a soup kitchen filled with (mostly) homeless men? I wanted to take them home. What happens to that baby when the two older ones started school this fall?

As I poured, I made sure to look directly at the lunch goers and smile. All were polite, thankful, grateful for a smile and direct look.

"Where'd you get that swab?" I was asked.  What? What is a swab? Familiar with swag but not swab. He touched his head, "Swab. Cap." I was wearing a white ball cap that was a Junior PGA Golf hat, taken from William. I'd have given it to him but I had to keep my hair covered.

One man went around asking all the workers for a rag. He wanted only some clean, dry cloth to clean himself. Imagine: no wash cloth to wipe your face. Something so very basic we take for granted. Just those couple of hours really have dug at me. At night, I look up at the stars and the night sky. Winter is coming. Where will they all go? How will they stay warm? Yes, I know the woman with the scarred face doesn't really have allergies (as she told the kids) but is a meth user. Yes, I know a good number made bad choices and that some, like in the general public, aren't good people. Nowhere have I read that we are called to serve the "worthy" only. Mostly, I saw people that wanted someone to really see them and smile.

My "brother" is out there somewhere. He needs a blanket for the winter. William and I are going to try to collect enough blankets to give each person served there, up to 500 people, a blanket for Christmas. It should be a good Christmas!

Thursday, September 10, 2015

Up Close and Personal

Did you ever wonder why people get crankier (okay, why I am getting crankier) as we age?  Why is there a perpetual frown on our faces and downward draw one the mouth?  Why do we have two creases  right at the top of our noses? It's because we CAN'T SEE! We're all squinting at every label to make sure we read the right dose on all the medications and vitamins we need to keep the engine running.

What possible evolutionary reason would God have to make us lose our up-close eyesight as we age? It seems only to disadvantage.  Then it came to I can't see the wrinkles in the mirror!   Yes, that's it!  Without my glasses, I look just as good as I did decades ago.  Stray hair on the chin?  Isn't there.  Wrinkled eyes? Smooth up close! From a distance, I do okay but up close....

There is nothing more aggravating than not being able to read without finding where I put my glasses. If I don't put in contacts for myopia, I can read without them but then I'm touchy because I can't see facial expressions and far away. If I put in contacts, I can't read up close. My eyes are messed up enough I can't use the new bifocal ones. I guess "it could be worse".

Wednesday, September 09, 2015

It Could Be Worse

In online forums, parents of children diagnosed with Type 1 Diabetes sometimes bristle at comments they've received to the effect of "It could be worse.  He/she could have (fill in the blank - usually with the word cancer)".  Most parents of children with diabetes intellectually agree with that statement.  In fact, if you read more in those online forums, you will come across posts from parents that write about encountering someone with a difficult diagnosis and that it gave them pause. But with raw emotions and grief at diagnosis, many rant at being told, "It could be worse".

Why that reaction?  It's the truth.  It could always be worse.  There are children with multiple diseases.  My sister, for example, is a specialist pediatric nurse for children with cystic fibrosis. Some of those children have multiple diseases, including Type 1 Diabetes. Additionally, their life expectancy is much shortened.  But, and here's the crux of it:  Just because another person has greater pain or a worse condition does not make the pain in front of you mean less or that you can't give support.

But, we, as a culture, don't practice enough learning the right things to say or how to listen. Most people faced with a chronic disease just wants someone to acknowledge the pain and difficulty. That's all. They don't want to hear about your great aunt that lost both her legs (to Type 2 which is a different disease altogether), about your cousin's friend's boyfriend that died from Type 1, about your pet that has it. They want you to hear them, see them. Understand. 

A common thread is, "You won't understand life with T1D is until you live it". I recently spent a week with that sister and she said she didn't know what I have to do, how hard it is until she saw it. She lived with it. And do you know? That made me feel so validated that she gets it. Nothing cheers a person up more than, "it could be worse!" Gee, thanks, what's next as if this isn't enough? I so appreciate your reminder because I couldn't have thought of that myself. 

If I could take away T1D from our lives, I would. I would, in fact, accept it as my own disease and spare my son. Since that isn't possible, I do have to look for any silver linings. It is making us better people. I probably have been guilty of saying the wrong things at times and not listening enough. If you experienced this, I apologize - and am doing better at that, I think. 

Who the bleep decided we would no longer double space after a period when typing? Do you know how difficult it is to break that habit? Two spaces messes up the formatting on Blogger.

Sunday, July 12, 2015


Maybe we've got the wrong word. Those of us in the DOC (Diabetic Online Community) often discuss the promise of a "cure". A supporter of JDRF, our family walks for a "cure". Don't get me wrong, my beautiful young man needs that cure, and in its absence for now, better and better technology to manage a life threatening disease.  You don't know how desperately I want that cure for him. But I also desperately want that no one else joins our "club".

As in a lot of medicine, treating the symptoms and the disease after the fact is standard. Our walks, our drives, our focus needs to be on prevention and causation. Though getting the word out about the symptoms and recognizing Type 1 Diabetes is critical, preventing it from happening in the first place is paramount.

Yesterday, a beautiful family lost their only daughter. Diagnosis of T1D came only after her brain had begun to swell causing irreparable damage. The doctor thought she had had a virus. Though she and her parents fought hard and well, supported and followed by thousands, she lost that fight, a fight she should never have had to fight if we knew what caused T1D. We need a cure, but we also need eradication.

Think that the medical community will know if someone presents with T1D?  Think again.  Many older patients will be thought to have Type 2 Diabetes by doctors and sent home with T2D medications, not life saving insulin.  Just this week, I read on Facebook about a mom whose 23 year old presenting with excessive thirst, frequent urination, and blood glucose that read "HIGH", was sent home with a T2D diagnosis and she wrote about it on a T1D Facebook page.  T1D moms urged her to fight back - T1D presents with sudden symptoms, T2D more slowly.  Surely, her son was T1D (though we were sad to say).  She pushed, and got T1D diagnosis, though the doctors did not at first agree.  T1D is an urgent situation.

Younger children will be thought to have a virus or flu.  Two other posts today, one of a four year old in a similar situation to poor Kycie, brain swelling, unresponsive. One of another small child who lost the battle.

Until the day that they can find that cause, it is critical that parents and pediatricians are on the alert for T1D.  Though still considered rare, it takes less than 50 cents to test at each sick visit.  Fifty cents that could save someone's life. Tell those you know with young children to either buy their own meter or demand a quick blood draw at sick visits. It is that important.

Update:  Today, a 4 year old boy died of undiagnosed T1D.  He was sent home because they thought he had a virus.  By Friday, he was in critical condition.  He died today.  It didn't have to happen.  A fifty cent blood test and these two beautiful children would still be here.

Thursday, July 09, 2015

Gluten Free Bread

One of the first questions asked at the hospital during William's diagnosis for Type 1 Diabetes was if there was a history of celiac disease in our family.  While there is not, there is a history of autoimmune diseases including IBS, skin, and thyroid disorders. (T1D diagnosis was, however, out of the blue.) The doctor indicated that some studies show a link between autoimmune diseases, inflammation in the gut, perhaps the microbe population there, and some environmental trigger.

We pursued genetic, vitamin level, and food allergen testing for several family members. One of the outcomes was the recommendation to go gluten-free. (Because dealing with Type 1 Diabetes isn't challenging enough.) Yes, I know many consider it a fad diet.  We have empirical data, however, in our family that the diet does help with headaches and other symptoms.  With markers for thyroid disease but not yet having it, my goal for William is also to prevent more autoimmune diseases from developing. It is not unheard of for those with T1D to develop additional autoimmune diseases.

But What About Bread?

My son loves bread, and was not happy about giving it up.  I went in search of a recipe that would appease him during the six month gluten-free, and to up the ante, casein (dairy)-free, trial.  My first few attempts were miserable.  The results were spongy, tacky, fell while cooling, and dense.  After a while, I came up with a recipe based on the Namaste recipe, but a bit changed in technique and a few ingredients.  Below is the recipe, which while it is a little different from wheat bread, is soft and delicious. It contains no milk products. The best price I have found for the flour mix is at Costco, where a five pound bag is about $9 and will make about 4-5 loaves. Compare this with off the shelf, prepared loaves at the grocery that taste dry and powdery for as much as $7 a loaf.

Cathy's Gluten Free Bread

Yeast mixture:
1 tablespoon yeast
1/4 cup warm water

Wet Ingredients:
3 eggs, room temperature
1.5 cups water, warm 
1 tablespoon vinegar
2 tablespoons olive oil
2 tablespoons honey

Dry Ingredients:
3.5 cups Namaste Gluten-Free Flour Blend
1/2 cup cornstarch
1 teaspoon salt
1 tablespoon chia seeds
2 tablespoons ground flax seed

  1. Mix yeast in 1/4 cup of warm water for 5-10 minutes.  It should be bubbling after that time.
  2. Mix remaining wet ingredients in a stand (like KitchenAid) mixer with the egg beater attachment.  I mix well until very foamy.  
  3. While your wet ingredients mix, stir together your dry ingredients in a separate bowl.
  4. Add the yeast mixture to your wet mix.  
  5. Add about half of the dry flour ingredients to the wet mix.  Allow to thoroughly combine.
  6. Change the attachment to the bread hook if you have one. Add remaining dry mix.  Mix on medium-high speed for eight minutes.  (This is a change from the original recipe.  I found another recipe that said thorough mixing is very important.)
  7. Prepare your pan: You need a bread pan with fairly high sides.  Coat the inside with olive oil. It is even okay to have a little extra oil in there.  
  8. Pour in the batter.  It will be the consistency of mashed potatoes and will be sticky.  
  9. Wet your fingers and gently guide the dough to the corners of the pan and even out.  Wet fingers as needed to not stick, but don't want to add too much water.  Do not push down or compress.  When it is somewhat where you want it, add a bit of olive oil to the top and continue to smooth the dough.  
  10. Let sit 30 minutes uncovered.  It will start to rise above the pan, and if you start seeing a little crack here and there, it is ready to bake in a pre-heated 350 degree oven.
  11. Bake for 30 minutes uncovered.  After 30 minutes, cover loosely with aluminum foil and bake an additional 30 minutes.  Although difficult to wait, let it cool in the pan a bit before removing (it needs the support of the pan or may fall) and before cutting.  It still may sink a little, but by waiting, it will reduce the amount.  
  12. I recommend mixing one loaf at a time, though of course you can measure out the ingredients for two loaves at the same time.  
That's it! If you see any errors or have questions, shoot them my way.  I want to continue to improve this online version of my recipe.

Wednesday, June 17, 2015

Making the Grade

At the end of the semester, I received my report card and was incensed.  My high school math teacher had given me a 99% in Geometry.  I had not missed one question on any homework or any test all year.  I had the papers to prove that I had 100% and offered to show them to her.  Her response?  She had to give me a 99% because I could not possibly know everything there was to know about Geometry.  My response was that I knew 100% of everything she had taught.  Being a powerless student, I had to accept defeat, but she knew I knew.  I still know, and if I could only remember her name....

Funny, here I am in my 50s and I still remember that and feel slighted. But my grades, that was a way to prove that I knew the material, and a comparison to others of how I was doing.  Silly really, because I loved Geometry and knew that I had learned the material.  I didn't need a teacher to tell me.  Intrinsic learning or learning for the joy of it was there, but I was raised in a graded culture and I wanted that proof that I knew my stuff.  

But what if students didn't get grades but learned as part of life?  What if knowing you were growing and learning was enough?  Would you be willing to send your child to a school that didn't grade? It is possible to be schooled through high school without grading in comparison to other students and to go on to and graduate from college.  My two daughters did it.

The A1C test, the average blood glucose over the past three months, is a number held as a type of grade of BG control by doctors, parents, and patients alike.  Every three months we present our devices, the office downloads the data, and looks at the A1C, our report card.  But, it tells such a limited story and is held up for admiration or hidden from others in fear of judgement,   It is shown as a badge by some - "Look, I've reduced my (child's) A1C. Look how low it is.  Look at the good job I'm doing".  Why do we feel the need to compare ourselves to others?  We are all doing the best we can day by day.   We know how we are doing.  I am shooting for near normal BG for my son, and some days, I don't get close.  I try again tomorrow.  

In the book, Sugar Surfing, Dr. Ponder talks about his early management of T1D and that instead of a number, there was a color chart, each color signifying a range of A1C.  I wonder if that wasn't a healthier way to communicate control.  Obsessing over 0.2 or 0.4% change when there is a range of error permitted of 0.5%? Reigning in the competitiveness by saying you're somewhere in the blue might be more supportive.

I'll admit that ditching a grading system would be hard for me.  I know that the standard deviation, the range of numbers, is as important if not more so than the A1C. Yet, I know that when I go to the doctor, I'll wait nervously for that number, unable to shake that feeling that it will define our dedication.  I'm still waiting for that 100%.  

Notes:  I will never adjust to the need for one space after the period.  I learned on a typewriter from a book in the dark ages.  (Monks sat next to me hand lettering.)  Now, I must go back to adjust spacing each time publish a blog because I put in two spaces where there should be one. It is automatic.

A fluffy, mangy, red cat is hanging out in our barn.  Anna says he looks too thin.  I can't catch him. Don't want another cat, don't want him to starve.  

Sugar Surfing

It's a bit like flying to me, or maybe riding a roller coaster. The difference is that every once in awhile, someone switches the track without telling you.  Your body is leaning the left but you go right.  Sometimes, the roller coaster stalls at the top of the hill, doesn't move and you just sit there, a little nervous for hours, wondering how the employees are going to get you down.  Sometimes, if you are paying close attention, maybe sitting near the front, you see it coming and can adjust.  On good days, you go up and down, moving with the train. Gliding.

A Continuous Glucose Monitor (CGM) helps us see those track changes coming.  We still have a few highs and lows, but less, and with more control.  Over the past few weeks, his BG averages a normal, non-T1D blood sugar.  We were already employing some of the methods described in Dr. Stephen Ponder's new book, "Sugar Surfing", describing using a CGM to attain better BG control but this book answered many of the questions I had and gave me more confidence to add insulin in to ward off a track change or worse, jumping off the track altogether.

Throwing away the fear is the most difficult part of parenting and treating a child with T1D. There is the certain knowledge that you are giving a drug that can seriously harm if not kill them.  I have been hearing people in the DOC (Diabetic Online Community), reading blogs like Arden's Day and SixUntilMe, and hearing the message, "Be Not Afraid". You hear many scary stories, many and it does happen.  More frequently, many T1D live long and productive lives and focusing there seems more psychologically healthy.

This book, while we wait for the ride to end with a cure, shows how to move from a static management of T1D to a more dynamic management.  I've heard of medical professionals say that such focus isn't healthy, that one has to "live one's life".  I don't think we look at our CGM any more than people today check their cell phones, probably less.  And, William is paying more attention, making more decisions, and becoming more confident in those decisions.  "I'm just surfing, Mom," he'll say.  The only caution I have is that at his adolescent age, his mind often loses focus and he forgets to check or correct.  That's where I come in.


Yesterday, I wrote that this book not only made me think differently about diabetes management, but also about how we grade and categorize starting early in childhood.  Because this post is getting long, and William is at BG 81 and great time for breakfast, I'm putting that thought off until tomorrow.

Note:  I know some insurance and Medicaid doesn't cover CGMs.  This needs to change.  They'll pay for those little blue pills but a device that keeps your child safe at night, reduces long term complications, no way.  Not medically necessary.  Makes me want to become a CGM lobby!

Monday, June 15, 2015

Making the Grade

"The measure of intelligence is the ability to change." - Albert Einstein

School taught me early on that grades were the pinnacle, the utmost important goal in that phase of my life.  Somewhere along my education, my self-esteem was woven tightly with my grade point average.  My intellect was judged with a letter.  Education was not just learning, it was a competition, it was proof that I had worked hard, and it was status.  In college, bell curves determined not what I learned or needed to, but how I compared to the others in my class.

It was a paradigm shift then for me when I began homeschooling the girls and was confronted with the requirement (in Kentucky) to keep grades:

The private and parochial schools shall record and maintain scholarship reports of each student's progress at the same interval as in the local public school, grading all subjects taught. (KRS 159.040)

A grade, by definition, is a ranking or sorting of the intensity, quality, etc. of the work - compared to others in the same study at the same time.  It quantifies how one is doing in relation to one's peers and serves as a way to communicate to parents and others involved in the child's welfare the progress of that child in relation to potential.  In a school, it serves a purpose.  When you are both teacher and parent, however, you know exactly the progress or lack thereof.  A grade begins to lose meaning when your goal is to instill instead a lifetime curiosity and love of learning and when it isn't needed to sort a group of students.

My new "grade" or report card is my son's A1C result.  I fight with myself to not see it this way, but I have read enough to know that many if not most parents of children with Type 1 Diabetes, and some doctors,  use that single number to judge how they are doing in the management of blood glucose. The A1C gives an approximation of the average blood glucose of the patient over the past three months.  If you don't have diabetes, it is likely your A1C is between 4 and 5.6%.  At 5.7%, you are considered at risk for diabetes.  The goal for someone my son's age is purported to be under 7%, and in adolescence, that can be a lofty goal.

As with homeschooling, time is shifting my perspective.  Each day, I know how my son is doing, as does he.  We have great days, we have shitty days.  We have pump failures, we have sensors that last two weeks instead of one.  We have nights of highs, lows, and perfect BG 85 all night.  We know how we are doing. Each mistake is an opportunity to learn.  Like algebra, our skill set increases which makes us faster and better problem solvers.  And, I don't care what our A1C is.

I know, overall, it has dropped.  How much?  Who cares?  What am I going to do with that single number?  Tell you that I've helped William manage better than that or this child? Tell you we've improved our management?  Interweave that number with our self-esteem?  Let you use it to judge us?  This is dangerous, I contend, because in life, there are ups and downs (literally, in our case) and circumstances within and out of our control will blow that A1C around like a toy boat on a lake.

Like homeschooling, diabetes management is really about lifestyle choices which take faith that long term, the results will be positive. So, why all this long winded dialogue comparing A1C with being graded?  I'm reading Dr. Stephen Ponder's book Sugar Surfing which I highly recommend and listening to some of his interviews.  He has made me think about this A1C business.  Tomorrow, I'm going to write about how I think a change should be made in supporting patients and caregivers of those with Type 1 Diabetes and a healthier way to communicate.

While you're waiting, go buy his book for your favorite person with T1D.  You (and they) won't be sorry.


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