Friday, May 20, 2016

Blood Draws: Unbruised, Unbullied

Blood Draws: Unbruised, Unbullied

Of all the pokes and bloody awfulness of diabetes, having blood drawn every few months is the worst.  I don't mind pricking my fingers several times a day or injecting insulin or even inserting the sensor. However, horrible experiences getting my blood drawn for labwork left me traumatized. I'd read all the tips (drink lots of water), but none of them really prevented the bruising.

Then I discovered my secret.

Just Say No.

I look them in the eye and tell them:  You get one chance.  If you can't get blood, I will leave and return another day.
No digging.  
No trying the other arm.
If you don't think you can do it, is there anyone here who can?

I've heard "Your doctor will be angry if she doesn't get the labs."  I reply, "Then you can explain why you were unable to do it."

I have a friend who teaches phlebotomy at the local college.  She told me that if the blood doesn't immediately go into the vial, the phlebotomist should ask a more experienced person to do the procedure.  They are not to dig or keep poking.  The sample can get contaminated by the debris, requiring another blood draw.

A good phlebotomist can get the blood on the first poke and minutes later, the only evidence on the inside of my arm is a tiny, faint dot where the needle entered.  Phlebotomists who hurt people and leave bruises on both arms  are bad phlebotomists who should find another line of work.  They should not bully people into letting them hurt them.

Since I started this, I've had good experiences and unbruised arms. Poke and I'm done.  Going to the lab the week before ensures that if I need to return another day, my doctor will still get the labs before the appointment.  

Thursday, May 19, 2016

Healthcare Wishes

Healthcare Wishes
  1.  I wish I were the priority of my healthcare team during the time I'm being billed.  I wish my needs came before theirs.  I shouldn't have to wait for my doctor to have pneumonia before she will allow me to have the vaccine.  I shouldn't be bullied into pills and screenings so the clinic gets better ratings or reviews.  The only ass I am interested in covering is mine, not theirs.
  2. I wish I felt they cared whether I lived or died, beyond whether they might be blamed.
  3. I wish they would say something besides "Eat less.  Exercise more."  I wish they wouldn't assume I must be lying about how much I eat and how I exercise.
  4. I wish they would see me.  All of me.  Not just parcel me out to various specialists.  I wish someone would notice if maybe some of this stuff is related.
  5. I wish they would care that the notes in my file are accurate.  I have never had a 14-year-old son.  I wish they would actually read my file and look at the data.  I wish they would look at my logbook.  I wish they wouldn't lie to me and then insinuate that I lie.
  6. I wish they would care more about what is actually wrong, rather than pretend none of it exists, focusing on looking for stuff I don't have so they can feel they "prevented it."
  7. I wish they wouldn't prescribe pills or exercises that they later admit they knew weren't going to solve the problem, but will supposedly keep things from getting worse.
  8. I wish they would stop threatening me that things will get worse.  I've reached a place where an increase in terror and despair is impossible.  On a scale of 1-10, I've spent most of my life around 11.  Raising it to a 12 won't make me more compliant.
  9. I wish that if they can't make things better, they at least don't make things more difficult. I wish they would admit they don't have the answers and that they are confused as well.  I would respect them more.
  10. I wish they would look at my feet, rather than leaving that job for someone less exalted.
  11. I wish they wouldn't arbitrarily cancel or cut back prescriptions or that I wouldn't have to fight to get authorization for my CGM renewed.  I wish they wouldn't arbitrarily assign me to yet another CDE, because the previous one got a better offer at another office.
  12. I wish they could be happy for me when things go even slightly well.
  13. I wish when I say that things are getting harder, they wouldn't insinuate that I'm just not trying.

Wednesday, May 18, 2016

Words Kill

Words Kill

"Sticks and stones may break my bones, but words will never hurt me."  Except they do.   How those word choices result in governmental policies; medical protocol; access to, not only insulin and CGMs, but food and clean water: these determine who lives and who dies.

Words divide Us from Them:  Those Who Deserve What They Get versus Those Who Deserve to Live Well.  Call it what you will: Type 1.  Type 2.  Juvenile diabetes.  Diabetic.  Person with Diabetes.  Maybe Pancreatically Challenged, because some are born with better pancreases than others, however that manifests.  Some people could be tossed into a giant vat of sugar and have to eat their way out and they would be perfectly fine. Sticky but fine. I like the acronym LADA.  A Lada is a Soviet car that is rumored to have less than optimal reliability and performance, just like my pancreas.  But whatever they call us, the result is that some are somehow not as blessed as others. For whatever reason, some can no longer effortlessly maintain a steady blood sugar.

Unfortunately, anyone can join at any time. Wearing a CGM, I can see at any moment whether my blood sugar is within bounds.  For most, ignorance is bliss.  What they don't see doesn't exist. As far as they know, their blood sugar is a perfectly straight line at the perfect number.  Gooba, gahba. They may already be one of us.

If it were just verbal abuse from select idiots, I could shrug it off.  But lives are being put in jeopardy and people are profiting from those decisions.

Diabetes is being marketed as a Lifestyle disease.  "If  people would make only good choices, diabetes would go away." The notion is attractive.  Think of the money saved.

In detective stories the rule is Follow the $$$.  Who profits?

The Weight Loss Industry had revenues of $64 Billion in 2014. Magazines like Fortune and Forbes report that those in the industry are worried about losing market share.  The wine industry didn't do as well as they did  ($37B). Others have already ranted about the huge profits made by insurance and pharmaceuticals.

The IDF has shifted its campaign goal to increasing access to healthy food as a means of lowering the incidence of diabetes.  Most think of this in terms of Preventing Diabetes by Eliminating Junk Food. McDonalds.  Coca-cola.  Government leaders and wealthy individuals can feel righteous and holy. The shift came, however, after the IDF published that they had finally gotten around to looking at a study they commissioned, "A Sub-Saharan African perspective on Diabetes" published October 2009 in Diabetologia (52:8-16), explaining MMDM (malnutrition-modulated diabetes mellitus).  Last year, a study was published in Science Daily about women who were pregnant during the Nazi Occupation.  Metabolic changes were passed down to the second generation. [Columbia University's Mailman School of Public Health. "Increased odds for type 2 diabetes after prenatal exposure to Ukraine famine of 1932-33."]  Thus far, no studies have been done on the results of generations of starvation policies on certain populations in the US.

Ensuring that people have access to sufficient nutrition may eliminate one cause of diabetes.  I fear, however, that instead the programs and rhetoric will be twisted into rationale for denying people food.  "See, rates were lower when Those People were starving."  Why spend money on food programs when you can starve people for their own good?  And why spend money on insulin and all the other paraphernalia, foot exams, education, etc. that the pancreatically challenged need to survive?  Of course, wealthy and powerful potentates won't be asked to skimp on food or do without insulin.

This is the big, ugly picture behind the words.  This is how semantics becomes genocide.  Not just in third world countries, but here at home.  I see it in posts on the DOC.  In horror stories of poor people of any color, white or brown, being denied access to health care, told they don't need test strips and insulin, just less food. In my own misdiagnosis of Type 2.  In the constant admonishments to eat less and join a health club/weight loss program (rather than swim and dance) matched by cut-backs or cancellations of my prescriptions.  If, as I've been told for 12 years, I am doing better than most of your other patients, why can't I keep getting the stuff that enables me to do so well?  By saving the insurance company a few bucks, will I be any healthier?  Or will I be an even bigger cost-savings if I'm dead and you can blame me for my death?  Maybe I have outlived my usefulness. Maybe if my life were as valued as theirs, they wouldn't mind the expense.

Tuesday, May 17, 2016

Madness, Madness, Madness

Madness, Madness, Madness

You probably don't want to read this.  

Today's prompt: The Other Half of Diabetes - "We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?

How has it affected me mentally/emotionally?  I'm going crazy and I'm driving the people around me crazy.  How have I learned to deal with it? I haven't.  I suck it up.  I try to keep the mask firmly in place so no one notices.  

Over the past decade, I have been assigned two shrinks and been sent to numerous help sessions. What I got out of it was that I should shut up and suck it up.  We're not supposed to talk about the ugly side, feelings of anger, despair and betrayal.  No yelling.  No tears.  No accusations.

Instead we are supposed to chant that "Diabetes doesn't have me.  There is nothing I can't do."  Except drive home after grocery shopping.

Depression screening consists of asking "How often do you feel like a failure?" followed by "You're fat. You're old.  You don't need to control your blood sugar as tightly anymore with the years you have left.  You're exercising all wrong."  I am probably the only person who is bothered by the metaphorical significance of a treadmill.

My shrink told the group she understood what it's like to have diabetes.  She hates driving behind people who drive the speed limit and waiting in line at the grocery store.  Yeah, that's exactly what it's like.  

She advised me to get a better job.  I worry about getting fired.  I've always worried I'll be fired.

"You should go out with your girlfriends."  I don't have friends.    Acquaintances I ask say no.  Saying no is empowering and I am a person to whom it is easy to say no. Besides, they're too busy doing things with their friends.

At the meeting, on one of those giant pads of paper, she had two columns: What we should do to alleviate stress and what we shouldn't do.  I looked at the left side and all of the things listed tend to twist me into knots, increasing my anxiety: transcendental meditation, breathing (I tend to stop breathing, unsure where I am in the pattern of inhale/exhale), yoga (literally tying my already crooked spine into knots), etc.  I looked at the right side: drinking, mindless tv, chocolate.  Those work, especially if combined in sufficient amounts. 

The black dog is getting larger and more frightening.

I've lived with him a long time, longer than I've had diabetes.  A mother who viewed being nurturing and nice as something stupid people do.  Family members with bipolar disorder or dementia. My scoliosis and the years in a Milwaukee Brace. Two breast biopsies where the anesthetic kicked in long after the procedure was over.  Screaming bosses.  Bullies.

People who don't get bullied don't get it.  "It didn't really happen.  They didn't say those things, do those things and if they did they didn't mean them and if they did I shouldn't mind. I shouldn't let it bother me.  Why am I making this such a problem?" Nothing appears to be wrong.  I function.  I take care of everyone else's needs, meet my responsibilities.  I can be counted on to show up and get the job done right.

I can't breathe.  The twisted spine everyone insists is straight (despite what the xrays show) may be the cause of the mildly restricted capacity.  

I can't dance.

The panic attacks and the days when I can't stop crying and I think about dying as a relief are more frequent. I thought, once my mother died, it would be like taking off a winter coat and boots in Spring.  After more than half a century, maybe it's too late.  I can't find the zipper.

You probably don't believe me.



Therapy is successful.  I've learned my lesson well.

Monday, May 16, 2016

Why Am I Here?

Why Am I Here?

I'm beginning to wonder.  Haven't I learned my lesson yet?  How thick is my skull? By the end of The Sweet Lowdown, I was ready to crawl under my bed and never come out again.  Message bedamned.  No one wants the message, I learned.

After one performance, an audience member told me: I learned a lot I didn't want to know.

What I learned was to what lengths people will go not to know it.  At first, they looked at me as if I were mental, slow.  "Everybody knows...," they assured me. Each time I tried to haul out the scientific research to the contrary, they would start sharpening their weapons.  I delete posts I've made on the DOC until I've finally removed myself from the group altogether.

Terrorize someone else and for that brief time one's own terror fades.  But only briefly.  Then the terror returns. Augusto Boal

The Sweet Lowdown was born of a desire to free people from that terror.  I naively believed that they would prefer to know the complex interplay of physiologic factors.  The Truth would set us all free from the shame and blame.

People prefer simplicity.  Black and white, no grey.  The old ways.  Others can dodge, deflect.  It's ancient, pagan.  Live a righteous life and no evil will befall.  Appease the angry gods by pointing them toward someone else less worthy.  Flagellate oneself for one's sins, lest the gods do worse.  Gluttony.  Sloth.  Licentiousness.  Pleasure.  Everything has a price. Except for those who are beloved.

Some days I don't leave the house.
Some days I don't leave my couch.
The underside of the bed is looking better and better.
I can't fight any longer.
I'm old and fragile and some days it takes all my strength to get from morning to evening and through the night.  If the rest of the world wants to believe this is a Lifestyle disease, prevented, reversed, controlled, whatever, sobeit.  I'll be with the dust bunnies, reading the latest research.

Saturday, May 9, 2015

Furry Fluffy

I am having difficulty typing this as I have a cat on my lap. 

As I approach my two class finals, I realize no project looms on the horizon.

What to do?  What to do?

Furry creatures smile.  Why not tell our story?

What story?

It will come to you, they promise. 

Introductions are necessary.
This little elf has been with me for over half a century. She is magical, whimsical, nurturing. 
A very old dog.  Growly, gruff,  stuck in his ways.
At Woodmans, he convinced me that if I took him home, stories would abound. 

She also convinced me that day that bringing her home would be in my best, creative interests.
A week later, I met this pup at Woodman's.  She reminded me of my sister's dogs, and at first, I thought that's where she belonged.  However, she convinced me that I needed her to stay or the stories would either be too stodgy or too out-of-control.
"We need a rabbit," they said.  "No story without a rabbit."  We found each other today and home she came.  Not sure why we need a rabbit.  She's worried about why exactly an owl, a fox, and a pup would want a rabbit and hopes they aren't inviting her to be dinner.  "You do know," she whispered in the car on the ride home, "that owls and foxes and dogs eat rabbits."  "Just little tiny rabbits..." "I'm a little tiny rabbit and I don't want to be dinner." 
Already this story is getting out of control.  No one has a name yet, and I'm not altogether certain of gender.  But here they are: our cast of characters so far, ready for adventures. "Life is better without adventures," mutters rabbit and I assure her we will have no tragedies.  "Maybe what we need are more rabbits."
All during Sweet Lowdown, I mumbled that writing and producing a show would be sooooo much easier if instead of needing to be Absolutely Scientifically Accurate, World Changing, Saving Lives by Telling the Truth, Dispelling Myths and Stereotypes, I would be much less stressed, less would ride on the outcome and I wouldn't mind how those who were supposed to be helping were twisting the show to say the antithesis of its purpose....  In short, life would be more pleasant and relaxing if it were a show about fuzzy bunnies frolicking with their friends. 
They promised me.  Would these faces lie? 

Wednesday, February 4, 2015

What We Must Not Say

Today I read about Sanofi's Diabetes Advocacy Summit.  The blogger I read was frustrated at the lack of progress.  The commenters voiced their frustrations, as well.  Yet, between the lines are the reasons for the lack of progress.  Sniff, and you can smell the bullshit we all accept.

Maybe it's like the smell of the manure wafting from the farms north of me.  Living amidst it, the farmer doesn't notice the smell.

There are things we don't question.  Things it is heresy to question.

The blogger is tired of hearing that we need to be more unified.  Yet the unification I too often see is an Us vs Them mentality, Type 1 vs Type 2.  An educated white woman worries about limited resources without questioning the idea behind it: that some are more deserving than others.  That if one group gets what they need, another group must do without.  Yet, I wonder how often she has been denied access to insulin.  Despite whatever connection she may have to a prestigious university, she seems ignorant that many with Type 2 also make no insulin while requiring even larger amounts to keep their blood sugar in range.  Shouldn't we be working toward enough insulin for all those who no longer make enough?

If we want the public to be better educated about diabetes, those who speak out need to be more knowledgeable.  Too many assume that diabetes, especially Type 2, is a lifestyle disease, easily preventable.  It's not.  Diabetes is an endocrine disorder, the result of a malfunctioning pancreas, that results in high blood sugar. 

I am tired of the stylish spokeswomen for the ADA knowing nothing about diabetes beyond what they heard on Dr. Oz.  Interim CEO Suzanne Berry may have a "strong background in disease-related non-profits" but for her salary she needs to know something beyond how to raise money.  She needs to know how diabetes works.  If she were working for General Motors, wouldn't she need to know something about cars beyond where to insert the key?

The national diabetes data registry sounds promising, especially as it will supposedly include LADA, MODY and GDM as well as Types 1 and 2.  I wonder if they will include the number of patients misdiagnosed each year.  And for those initially misdiagnosed, will the correct diagnosis be entered and counted?  Will fewer doctors assume that the patient must be another non-compliant Type 2 and will more doctors be encouraged to look beyond a patient's age and weight?

Will having more data lead to a shift in how we view diabetes?  Or will those in a position to change things pick and choose what they see?  Will they be able to change or will they keep doing what they do?