The Diabetes Detour... Where am I, again?

One of life's many reminders that
 I am not alone, with diabetes.

"Who are you?," I asked, as strange and odd faces peered over me, picked me up and placed me on a stretcher. "What am I doing here?"

No one answered.

The world felt really odd, and weird. My head, compressed and pained, while my vision was at odds with my mind... as if I had put on a pair of someone's prescription glasses many times more powerful than my own vision, and making everything in sight oddly concave.

"She keeps saying that!" said the voice of a red headed woman with too much eye make up, in an exasperated tone, and incredulous that I could not remember who any of them were. Funny, I thought I'd only asked once. The attention was unnerving, and frightening... and their annoyance was oddly embarrassing. I really wanted to get out of there, and go home... If only I could of remembered where home was.

On October 26th, 2007, I had a massive seizure at my desk, at work... Or so they tell me. I can't remember when it started, or what provoked it... I can't remember much of anything about it, or that day, for that matter.

All I can remember is laying in a hospital bed, in a medical gown and no underwear, under the gaze of my former Human Resource Manager, and trying hard not to look like a woman who's not wearing a bra. He was a brutish man, with a hot temper, and little human resource education. It's the way of the world in some of these up and coming companies. You get to be buddy-buddy with the head honchos, join the good ol' boys club, and then it doesn't matter if you have any qualifications for a job. His way of qualifications was a 6 month stint as temporary HR manager back in 1984. (Yes, you can laugh out loud.)

... And so it was that a company who sold out to a much bigger company, coincided with a production foreman (wise in the ways of verbally intimidating employees) being made into an HR Manager (a position which requires extreme diplomacy), and me... developing extremely debilitating, and uncontrolled type 2 diabetes, with no one knowing what it was, at the time.

It was a perfect storm, really.

They needed to cut down on employees... and I got sick. I was a good target. We all knew they were going to cut SOMEONE. They kept having all those 'behind closed doors' meetings. And no one knew what I had at the time, so I got to be made to look like a mediocre employee who just wanted to play hooky and not show up to work. A great way to cut staff (and I made quite a bit of money, in my position, so it was quite the savings for them, I am sure). They had already tried to intimidate me... by demoting me, claiming I was unorganized, and had made many mistakes. (It didn't matter that, when I asked, they had absolutely no examples to provide to back up their assertions, other than my illness related absences, which had been closely monitored by my doctor... nor that a few months earlier, they had given me perfect praise... nor that my previous review had been above excellent.) They wanted to break ME as a person, and get me to quit. They wanted to treat ME as worthlessly as another unskilled production employee.

So, I had a seizure. It was on a Friday, and I spent a really ill weekend at the hospital. Went home on a Sunday, with a very chewed up tongue, migraines and dizziness issues... And when the HR Manager demanded I be at work on Monday -- but couldn't do so, for obvious reasons -- he fired me. The company NEVER contested my claims for unemployment insurance; they never even showed up for the hearing.

I can't tell you... HOW MUCH I have blamed myself over the years. How much I have felt like a worthless person who just couldn't keep running as hard as she could, who couldn't just grin, and bear it. Still, to this day, I sometimes have many nightmares... sometimes reoccurring dreams where someone calls me, 'forgives me,' and just gives me back my job. I loved my job. I loved making a difference. I loved making people smile with my organizational skills, and my programming skills, and my language interpreting skills. I loved interviewing new hires, and giving new employee orientations, and speaking to big audiences... I loved educating, and writing, and speaking, and everything I did. I had been promoted to a better position within 4 months of hire, and given hefty salary raises for my skills. I had dreams of further certifications, promotions, and continuous education degrees. I LOVED MY JOB. I loved my life. 

For many years I felt like I lost my soul on that day. I lost my soul, and I let myself go. I let myself go, and felt like I died. Long, lost, and forgotten... someone who forever had ruined her life. I felt great shame, and hurt. Great anger.

Diabetes came into my life with a BIG bang, and like a tsunami... washed up many parts of my life with it. Great post traumatic stress took over, and made me shy away from new jobs, job situations, and new friendships. Finding a job, a permanent one, and keeping it... for the last 5 years has been HARD. I wanted to cry and wallow in self pity.

Diabetes is HARD. And it's often embarrassing. And people JUDGE you. They do. People DON'T understand. People think their lives are textbook examples for how other people's lives need to be. They judge you, and they often try to bring you down.

But you get up. You get up, and pick up the pieces of you... as many times as you need to... and you keep going.

I now work minimum wage. I don't do anything near as glamorous as I once did. I have two jobs. I work unloading trucks, and at a fast food place. I don't even have a car. I walk long and far... just to make minimum wage. But I am... OKAY. I'm OKAY, and I am even happy, sometimes. Heck, I'd say most of the time.

My bosses don't really get diabetes... but they LISTEN,  and they try to understand, and try to help me be safe at work, and make concessions. My coworkers LISTEN, and they care... My bosses let me be ME, with diabetes. They let me be ME, in spite of diabetes. Sharing with coworkers the other day, and even opening up about my traumatic past, really made realize... that it's OKAY. That I can move on. THAT I AM SAFE.

Sometimes, some of those people I used to work with at the Human Resource job, show up for lunch at the fast food place. They seem to look down upon me with a certain pity in their eyes, or with embarrassment that I am doing a fast food job, and I just smile kindly back to them. I smile because I'm happy, and they don't understand my journey... and I hope they NEVER have to.

I smile... because though I loved, and miss my job... happiness and freedom are not found in jobs, nor what people think of us. They are found in those 5 year detours in the desert... when all you have is YOURSELF.

(... And, ironically, the original founder and owner of the company passed away, not long ago, of type 2 diabetes complications. I may have lost my job, money, insurance, etc... but I guess at least I still have my life... and boy am I LIVING it.) 

UK Food labelling consultation - have your say

Thanks to Dave (The Tangerine Diabetic) for his excellent writeup of Diabetes UK's Big Event (and also on Shoot Up or Put Up. Following his 'call to arms' I urge you to get involved with the public consultation on food labelling. The consultation ends on 6th August 2012. Have your say here right NOW!


Dear Sir or Madam

I have only today been made aware of the public consultation on the front of pack labelling as detailed here: www.dh.gov.uk/health/2012/05/food-labelling-consultation-launched/

Along with approximately 2.5 million other people in the UK I live with diabetes. I am one of the 250,000 or so people with 'type 1', the autoimmune version of the condition. As you may know food plays a pivotal role in the control of both type one and type 2 diabetes and in some senses knowledge about food eaten is as important as any medication taken - even injected insulin. I can't live without insulin, but I can't live without food either! Injected insulin needs to be balanced against the carbohydrate in food (that's all carbohydrate, not just sugar). Getting the 'sums' wrong in either direction can lead to unconsciousness/coma/death on one hand or blindness/kidney failure/amputation etc on the other. Food and diabetes represents a balancing act with both short term and long term perils waiting in the wings.

You have to to a LOT of back-of-pack squinting as a person with diabetes. I've been living with Type 1 diabetes for over 20 years and in all that time I can truthfully say that not a morsel of food has passed my lips without first being considered and evaluated in terms of its likely effect on my blood glucose level.

I would urge the committee to add more meaningful information to the front or packs by including CARBOHYDRATE rather than just 'sugar'. Even better would be a Glycaemic Index/Glycaemic Load indication (an average figure relating to how fast a food converts to glucose in the bloodstream). Both for people with diabetes and for those without *all* carbohydrate converts to glucose in the blood. What is not well known is that sugar, though it is energy dense, does not convert particularly quickly. Many foodstuffs sold as being 'healthy' and 'slow release energy' are in fact substantially faster to convert to glucose in the blood than sucrose (table sugar). Most 'healthy' breakfast cereals, for example are particularly poor in this regard. While this is of acute interest to those of us who are 'playing at being our own pancreas' it is also very important to everyone. Foods which convert rapidly to glucose cause a burst of insulin release and contribute to weight gain and cholesterol imbalance whether or not one has diabetes.

Adding 'Carbohydrate' to pack fronts, and indicating how disruptive a food is in blood glucose terms could be crucial in slowing and/or preventing many hundreds of thousands of people's slide into Type 2 diabetes, and would enormously help the blood glucose control of people already diagnosed.

80% of the NHS budget for diabetes is spent on treating preventable complications - helping people with diabetes make better food choices, and helping others avoid developing diabetes in the first place offers a significant opportunity to save millions and millions of pounds for the NHS at almost no cost.

Kind regards...

Raising Hell... One Ice Cream Scoop at a Time

Last year, a certain man writing for his local newspaper, took advantage of the health struggles faced by people with type 2 diabetes to push his OWN agenda: Food Alarmism. In it, he claimed folks with type 2 diabetes were like alcoholics, who needed to be kept away from all sugar, and be on a fruits, vegetables, and grains only diet. 

It was a very hurtful column, not just for type 2 diabetics -- who get BULLIED constantly because of the massive amount of assumptions and misinformation in the news and media, but it also hurt type 1 diabetics as well. In his post, the man became indignant because the local type 1 diabetes organization in his community was having an ice cream social to generate funds so they could send some children to diabetes camp, and he confused them for type 2s. Not only did he wrongly confuse type 1 children for type 2 patients, but he also tried to be our food police! These kinds of strict views on food are the views that often lead to many eating disorders, and poor self images. Diabetics world wide were enraged, and responded swiftly against this level of ignorance. Soon thereafter, the newspaper took his columns down.

It was no surprise to me to find out he was a "Chef, Motivational Presenter, CBS Host, and Syndicated Author." It's always this type of 'persona' that want to stir the pot. He needed READERSHIP, and MONEY! And what a way to do it, than with food alarmism. 

Food Alarmism is becoming more the rage these days, what with the credible threats of pollution, pesticides, GMOs, cattle hormones, etc. There is no doubt that we, as consumers, need to become a little more discerning with what we put in our bodies, and be more mindful of moderation.  

The problem is that food alarmists feed on our constant food insecurities. They are like any intolerant religious zealots or fundamentalists: they leave NO room for anyone else to live life, or their diets, differently... PLUS they want to make money off of you. They feed on YOUR 'concern' and 'fear' and your desire to be 'healthy.' Then you go around recruiting OTHER people with your genuineness, and bring them over to their side. They can be just as bad for you, health-wise, as the fast food industry we so want to attack. They also love to claim they have the all the aswers, and the science to prove anything... taking advantage of those who aren't savvy enough to recognize junk science when they see it. Small studies with minimal results, studies with inconclusive results, studies done by organizations with biased interests, studies where little is known about the population groups used, or research promoted by people trying to sell you something, etc, etc. People regularly flock to 'The Doctors,' 'Dr. Oz,' 'Dr. Hyman,' and 'Dr. Mercola,' for their daily dose of alarmism. They DON'T care about how you felt better thanks to the placebo effect, when you took their supplements; they care about the $60 you spent on their supplements, or their books.

So, last year... intent on proving that we, diabetics, can control our own diets -- in MODERATION -- and that we do NOT need to be policed, or be on diets of just fruit, veggies, and grains only... I set out to create the first online, and worldwide, Diabetic Ice Cream Social.

I just got tired of people telling me what I can, and cannot have. Writing articles giving license to others to police, or bully me, or using their OWN fears of food to control my life... or assuming I'm a lazy slacker, or a person with a bad diet, if I choose to have a treat, once in a while. Over 2,400 people responded in support... and yes, I'm going to do it again. We need freedom to mind our own lives, and our own illnesses... without busybodies out there pushing us around as to what we can/can't/should/shouldn't eat. 

I've been criticized left and right this week, by a few who are against my social: 

• I'm irresponsible, and promoting gluttony (a moderated portion of ice cream hardly classifies as gluttony);
• I'm irresponsible and not promoting good eating habits (excuse me, moderation is a GOOD eating habit);
• I should instead write letters to editors, and just attack the problem directly (we can all raise awareness in different ways... but perhaps YOU should write the letters, instead);'
• I should be holding a 'marathon' or a 'walk-a-thon' instead (why? so that a lot of people aren't able to participate, because they have mobility issues, or neuropathy?) 
• That I am increasing the type 2 diabetes epidemic (surprisingly, this one came from a type 1 diabetic who should know eating a scoop of ice cream is not going to give ANYONE diabetes.) 
• That I am wasting my time, and instead I should go around collecting insulin to give to needy diabetics (ummm... how about YOU get off your behind, and collect insulin? If it needs to get done, DO IT... don't accuse me of not doing it! Do what YOU have a conviction that needs to happen.)

So... controversial as it might be, because of these reactions and more, I am convinced -- more than ever before -- that we NEED this type of awareness. Going around lecturing people on how sugar doesn't cause diabetes is not the most effective way to do it... Teaching people that moderation is what makes LONG LASTING healthy habits, and not just crazy, restrictive, fad diets -- IS. 

YES WE CAN. 

My numbers after last year's ice cream social.

(See also: The 'Betes Preachers)

How's it hanging?

A few weeks back I had my first ever 'Pump Clinic'. I've been in for a few individual appointments, but this was the first (presumably annual) review of how things were going. I had a 'spare' HbA1c that I'd been given at my last 'Annual Review' and decided that this was a pretty good time to play my A1c joker.

I was fairly pleased to get a result of 49 (6.6%), though my meter averages suggested it might have been a little lower than that. I am beginning to think that the Contour Link's habit of reading slightly lower than my old Expert means that the conversion I used to use to estimate an HbA1c from meter averages is now a little off.

I also had a full lipid panel done (my GP review in March had mistakenly only ordered a total chol figure which is not much use in my book). I was happy to see that my total figure had fallen slightly to 4.7 and the splits remain reassuringly promising (for cholesterol nerds: Total chol 4.7, 1.9HDL/2.5LDL, Trigs 0.6). Fingers crossed my old ticker has a few more years in it yet.

I'm not sure if the folks at the pump clinic had just had a particularly challenging morning, but it was lovely to have my Pump DSN and the Consultant who heads the clinic saying such nice things. It may have helped that the basal tests I'd been asked to do in the weeks running up to the appointment (and had been in the process of doing anyway) had fairly spectacularly improved my levels. Artoo and I have been plodding along for 8 or 9 months now, and we seem to have hit a bit of a purple patch. The weeks running up to my appointment were pretty good, and while I've needed to do a little more tweaking since (darned basal goalpoasts on the move again) I've had another few weeks of really good results.

I think I'm beginning to see what all the pump fuss is about.

During the appointment there were slightly raised eyebrows when my sites were being checked, because of the way I was wearing Artoo. In the first few weeks of having a pump I got increasingly annoyed that the clip on the back only allows the pump to hang vertically on a belt. This meant that Artoo was sitting really high and frequently made his presence felt by digging me in the ribs. He went so far as to draw blood on one occasion when I was getting in and out of a car.

Almost all of the 'how do you wear your pump' comments I see on blogs and forums seem to be from women who smugly say how marvellous it is to be able to hang it from their bra. All very well for you lot with your copious cleavages and fancy undergarments, but not much use for me. For blokes it seems to be belts or pockets only. Like some sort of inviolable test of pumping man-dom. Since I have no room for anything else in my pockets I looked around for alternative clips. Medtronic do one described as a 'holster' (which appealed to my 8-year-old-Magnificent-Seven-loving self). I duly filled the irritating VAT/account creation paperwork, paid the exorbitant price and waited. Within an hour of eagerly sliding Artoo into it for the first time I knew that it was going to be hopeless. While yes, strictly speaking it does allow the pump to hang horizontally, it only does so with a sort of plastic 'back board' with the clip on which hangs vertically and is exactly the same size as the pump. Not only that, but the twisty mechanism is fairly loose so it's very easy to knock your pump into a wonky angle. Short period of tutting and grumbling. Original clip back on.

My solution (and the reason for the raised eyebrow) is pictured on the right of the lamentable 'holster'. It was a £1 scrunchie from Asda (other reasonably priced hair accessory retailers are available). Essentially a long loop of elastic with a cotton cover. Looped three or four times around my belt I can get Artoo to hang perfectly level by passing the clip through the loops. Because it's elasticated I can easily slide him left or right between belt loops, either more on the hip or more toward the front, to suit a seatbelt or whatever. Additionally the little bit of 'give' in the elastic means that I can tilt the screen toward me and read the display right-way-up without any 'having to get out of bag' complexities. Result!

I don't know if it is only me who had this struggle finding a the perfect method of positioning their robot counterpart, but if you are still struggling (and getting bruises around the waistline) I'd recommend a £1 scrunchie every time.

Where do you put yours?

The Stepford Diabetic: The Most Frustrating Type of Diabetic

September 29th, 1985.

I remember I was with my dad, out in the country. My dad was a real estate appraiser, and often would go appraise homes or farms 2-3 hours away, deep in the Puerto Rican country side. I loved it. I put on my 'Tinkerbell' brand make up, and dressed up... and dad would let me take pictures of the properties. You got to see a different way life; farm animals up close, and the people were always so kind. Sometimes they'd pay you in fruit, giant bunches of plantains or bananas, or even legumes. Sometimes in animals, like rabbits.  (I came by a pet rabbit that I adored, this way.)

I don't remember the town we had gone to (it might have been Mayagüez), but I remember it was raining soooo much, and we had to cross the Añasco river bridge. You could see the river was really right up to the edge, and it was quite scary. Dad took a risk that day, and crossed anyway. We made it home, but many other people did not... Just a few moments after we crossed that bridge, the river took the bridge, cars and all. 

To say we had a tropical wave is to put it mildly. We always have tropical waves. No one bats an eye. Some rain, no big deal. Except... I have never seen another tropical wave like this, that wasn't - well -- a hurricane. No one was prepared. The wave didn't have a defined center, so it was never classified as anything stronger, and no one issued any warnings, or was seriously worried.

But on September 29th, the rain began... and it didn't let up. We had about 32 inches of rain in ONE day. By comparison, Oregon gets 37 inches of rain in a year, and Hawaii about 23.

The night was even more horrific. We had no power for a long time, and would listen to reports from a battery operated radio.

There were many awful stories, but (in my mind) the most traumatic story came from a man who was travelling late at night, when suddenly and by grace, he noticed the bridge was out. (Many bridges fell that night, and I can't remember which one this was, but I do remember it was a very tall bridge with a river raging below. The river had taken the bridge.) He stopped his truck by the side of the road, and tried... as much as he could, to flag and stop other drivers and keep them from plunging into the cold, raging waters. But he failed. People thought he was a lunatic, a mugger... a crazy person. One by one, he saw many cars plunging into the depths... No one cared to listen. They were sure of themselves, and their judgments of the man.

The scene... played out in my mind over and over. It gave me many nightmares. (I was only 8...) The chance were I, too, could have died... also played in my mind. It was an unnecessary risk. A foolish risk.

This is how I sometimes feel, when I work with people with diabetes who are not exactly knowledgeable, or in control of their care. I feel like a desperate person, trying to flag down helpless people... unaware they're an inch from losing their lives, because of their own pride. 

• People with constant out of control numbers, thinking it's 'no big deal,' because they aren't 'as bad' as their previous numbers... or because they don't feel bad.
• People not getting on much needed insulin, afraid of myths, and stereotypes, or for crying out loud, of a needle, and poking themselves. (I'd much rather be afraid of the horrible consequences of uncontrolled diabetes than some needle.) 
• People who want to obey everything said to them by medical professionals, hook, line, and sinker... without much thought, or research; who stay on dangerous regimens, out of control numbers, and ineffective medications, or diets, because they're too afraid to say something, or seek a second opinion. 
• People being lead away by 'miracle cure' nut jobs, or crazy fad diets, and supplements. 
• People who won't check their blood glucose numbers, because their doctors said they didn't need to! 
• People who just don't wake up... no matter how much you share with them, or try to guide them. 
• People lacking in courage... to truly admit to themselves the seriousness of this condition. (Out of sight, is out of mind, I guess...)  

I know I can't police people, or change their minds... or tell them how to manage their diabetes, or how to tell when a medical professional is less than professional, or bad... or that they ought to seek more in-depth information about their condition. I know. But often, in groups, and forums... it sometimes feels like someone wants to start a conversation by asking you your opinion, and then not letting you have an opinion; telling you you're wrong... or just brushing you off. Or by bragging of their careless life. (Yes, there are occasional folks who brag about their out of control lifestyles... and not just occasional escapades, mind you, and bring down the whole mood of everyone around them.) 

As someone who has seen what it's like to die from ALL the most horrific complications of diabetes, I can't help but feel like that man, on the side of the road. I just do. Denial is a powerful thing... and I wish I could slap people right out of it. Uncontrolled diabetes (especially type 2 diabetes) is like a thief in the night; you don't hear it or see it coming... and one day, you've just been robbed blind. It makes some folks overconfident in themselves, and their lack of care. 

And these people... who want help, but don't want help. That is the MOST frustrating type of diabetic. And none of us can help them, medical degree or not, until they want to be the pilot in their care, and not the silent co-pilot. A Stepford Diabetic.