Intensive Management vs. Emotional Burnout

This post was prompted by a fellow Diabetes Warrior Parent, who wrote about "When is Too Much, Too Much?" Thanks for the inspiration Reyna from Beta Buddies

That phrase echoes my experience three fold.  I have gone OCD on diabetes in the past. Testing too much, analysing like a crazy mad scientist, CGM, Pumping, weighing, measuring, counting the carbs right down to a half gram. 

Was my Control improved?  Absolutely. Was I happy? Absolutely Not! 

Diabetes was dominating my every waking moment more then it should.  Which brings me to the conclusion that sometimes simple is nice. Now I should add that I definitely advocate for intensive diabetes management, but not at the expense of emotional burnout. And, It really is a fine line.

Now my one Type 1 daughter Rowan, went from MDI, to Pump, now back to MDI.  Why? Primarily for physical reasons, as her pump sites were looking a little on the lumpy side (Hyperlipodystrophy) Also, It too was necessary for mental sanity. We were micro-managing her diabetes and pump.  I was getting texts 3-4 times a week from her school informing me her readings were wonky. Now I am lucky to get one once a  month. We've simplified things dramatically, and as a result, we are feeling some emotional reprieve and her control has improved.

As a parent of 2 children with Type 1 it is very easy to chase numbers, over react, change things, basals, boluses, testings a gazillion times a day, worry or cheer. All this at the will of the results on the CGM or in our case the Meter.

I do know how exhausting this is, and how every reading isn't just a reading, it represents sooo much more then that. It is a Mark, or measure as to how well we(as parents) are managing our innocent vulnerable child's Diabetes. And some of those reading can emotionally crush us.

This insurmountable task of managing as an external pancreas takes a huge toll on us emotionally. So can we simplify things, or at least mentally simplify things? Good Question. And something I encourage all of us Parents and PWD(People with Diabetes) to reflect on. I know my awareness about Quantity vs Quality is evident often. I think it is a Nursing thing, when a person who is told they can live 3 extra months but need to spend half that time sick with no quality of life. What is the point of living if the disease or illness dominiates our life to the point that our quality of life is severely hampered. Not this guy, no freakin way.  I want to prevent longterm complications for all of us but I also want to live Life!

I love the saying KISS, or Keep it simple stupid.  Now before you all swear at me, I am not calling anyone stupid other then myself, cause somehow I make things more complicated then they need to be. My regime for example, always improves when I stick to a simple plan. Eat sensibly,  measurable carbs, test 4-5 times a day, look at the trends weekly and tweak.  It works and no I don't do this all the time, and Yes I often drive myself to the brink of insanity. But lately it is about finding the balance between quantity and quality. Life should be all about diabetes but about Life and Diabetes on the side.

I do know this though, Simple works. I don't mean simpler technology, my pump works better with 4 basal rates as opposed to 8. It is a fabulous device. But I know that I can over complicate things by analyzing things to frequently, over thinking decisions, second guessing my self.

The complexity in diabetes management is taxing on the brain and the trick is to ask - How can I balance all this physical stuff(testing, injecting, pumping) with the Life, so that it doesn't out balance quality of life and lead to burn out?

That's the balancing act for us folks living with diabetes daily.

Trev

Time to Recruit My Team

"There's No I in Team"

My Life is a Whole Lot of Diabetes.  Almost Too Much. 

As my regular readers are aware, I Treat Myself, 2 Children, and Also assist hundreds of patients with their diabetes.

I try my best to assist everyone in the above scenario, but I waver to admit, I am doing a piss poor job with my own diabetes.  I do okay, but I'm frankly in desperate need for an objective opinion on my diabetes. 

As luck would have it, I work with a Nurse, who is also a CDE(certified diabetes educator) who works part-time with my old Endo and her under grad degree prior to nursing was nutrition. Cool, eh?!  So I was complaining about diabetes, and the type one support deficiencies in the system(my opinion of course) and after some discussion she offered to take a look at my trends.

I thought for a brief second, and said "that would be great".  Not only would this take the pressure off me a little, but I would be accountable to give my numbers to a respected colleague weekly to review.

I then thought, I need to take advantage of what I tell others to take advantage of.  Like pump courses, even though I do know a lot, but I have never formally taken the pump training, I just read and digest, and do, so to speak. 

I am also going to ask my family doctor for a re-referral to my Endo.

The neat thing is, my new team will allow me to be helped as a patient, which is a little weird for me, but is likely what I need to feel better, supported, and in better control of my diabetes.

How important is your Diabetes Team or Endo to you or your loved one with diabetes?

Trev

Shocking News - Embarrassed Teen



"Note Pink Shirt Standing to the Left,
She is Not impressed"

 I knew it would happen, but nothing ever really prepares you for what I am about to share.

Last night my oldest daughter Dareian had a Soccer game. During the game she started out with a bang, scored a goal, ran like a cheetah, and totally kicked ass. But I noticed her slowing down closer to half time.

As any concerned Improvising Pancreatic Substitute would do, I ran up to their huddle, and said to the coach, "Can I borrow her?"

She was immediately unimpressed.  She slid away from the group and completely shunned me, her dad, I was hurt, then I whispered to the coach, and awkwardly added, "She has Type 1 Diabetes (like he didn't already know) and we need to test her sugar"  He nodded in agreement.

I then jogged back to my area of refuge, wanting to crawl under a rock. Feeling completely rejected, and confused, to unintentionally embarrass her was different then my purposeful attempts of past.

On reflection, I new the time had come, where she was now transitioning into a self conscious, or overly conscious teen, who unfortunately tend to be hyper aware of their social surroundings. A VERY SAD DAY

10 minutes later, once all attention was back on the game, she jogs over and allows me to test her. She was high, which happens with these adrenaline pumping games.  I gave her some water, and told her she was doing really great out on the field!  She patted me on the shoulder, and ran back to finish the game.

My baby is getting all growed up.

Trev

Dear Diabetic Life

Tomorrow is my 39th  Birthday. Yes, 39 years I have existed on this earth. I have had diabetes now for 30 years, wow, hard to believe.  On my drive to work today, and after dropping my children off, I watched them stroll up to their school. I had a flash of my childhood, or more precisely my childhood prior to being "Diabetic"

I was in my back yard. Kingston Ontario, basking in the warm May sun on my birthday 33 years ago. I was 6 yrs old. I think of this memory often. Not sure why, I think because it was a fond memory. Things were simple, play, gymnastics, swimming, and nothing else.

I remember eagerly awaiting my friends to arrive for my 6th birthday party. I remember hot dogs, cake, treats, laughter, and all that good stuff. I remember biking, and feeling free. I am grateful for my childhood. I am grateful to have been loved and now to be able to love.

I am glad to be healthy still despite my life challenged with diabetes. I am grateful to be still fighting, and meeting the challenge.

I don't feel happy or sad about my birthday tomorrow, just grateful. Funny how that is, as my life progresses, and mortality presents itself, things of importance fall into place.

Family, good health, and enjoying life.


Trev

Diabetic Muffin Man VLOG

Well as Promised, here is my first Baking VLOG and my second installment of the Diabetic Muffin Man.

And the finished Product!

Cheers!

Trev

Electrified Legs or Restless Leg Syndrome

Lately my legs are feeling electrified.  And as a result, I am not able to fall asleep.

Terrible, I know, but it's really starting to drive me crazy!

I go to bed, and literally my legs feel ENERGIZED like I need to get up and run around, even though I am mentally wiped.  Serious conundrum I have. And Apparently so do many others. Like 7 % of the general population.

I of course, self diagnosed my electric leg problem as Restless Leg Syndrome, or perhaps some mild Peripheral Neuropathy, and shared this brilliant epiphany with my Family Doc. He gave me some samples of Caltrate, a Calcium Vit D multivit supplement and told me to trial it.. I now take it daily, and thought it may be assisting, until the last few week.

As a result of my issue I needed more info and did a brief literature review:

Merlino and company define Restless Leg Syndrome as below:

 Restless legs syndrome (RLS) is a sensorimotor disorder characterised by a complaint of an almost irresistible urge to move the legs.

Yup!  That's me, that's me.  Like even sitting in my office today my legs are vibrating. But is it RLS or some other Neuropathy related to my 29 year history of Type 1 DM.

Well the above article adds;

Furthermore, recent studies show that RLS may be associated also to type 2 diabetes mellitus and to multiple sclerosis.

May be linked?  So I continue my search.

Garcia-Borreguero from the Institution Sleep Research Institute, Madrid, Spain adds:

Recent data from the REST (RLS Epidemiology, Symptoms, and Treatment) general population study show that symptoms of RLS are present in approximately 7% of the general population, and that 2-3% experience moderate or severe symptoms at least twice a week.

and;

RLS is associated with a significant impairment of quality of life, comparable with that seen in chronic medical conditions such as diabetes or depression.

Man, this better not be another diabetes "Problem" to deal with.

One more study done by Gemignani, Franco and colleagues concluded:

Our data show that RLS is a relevant feature of diabetic neuropathy, as a frequent and potentially treatable manifestation of small fiber involvement in the course of DM and IGT/IFG.

Once again supporting a linking of RLS and DM, Wonderful!!!  Now what can I do about it?

Schapira from the UK links not only Diabetes, but also a genetic component to RLS.  Funny my Dad who doesn't have Diabetes, goes to bed at night and vibrates so much Mom frequently kicks him out of bed.  To quote the study directly:

Four essential diagnostic criteria for restless legs syndrome (RLS) have been identified. Patients experience an urge to move the legs, which typically begins or worsens during periods of rest. The symptoms are at least partially relieved by movement, and are typically worse in the evening and night than in the day. All four criteria are necessary to confirm the diagnosis of RLS. In addition, a family history of RLS, the presence of periodic leg movements in sleep, and a positive response to dopaminergic therapy are useful supportive clinical features to confirm the diagnosis. Whilst many cases of RLS are idiopathic, secondary RLS is often observed in pregnant women, patients who have severe renal dysfunction, or in those with iron deficiency.

I then looked into what can be done about my vibrating legs.  Satija add this about treatment and prognosis.

Treatment of RLS is usually rewarding. Most patients respond robustly to dopamine receptor agonists. Over time, response may lessen, or the patients may develop 'augmentation', whereby they have a worsening of symptoms, usually in the form of an earlier onset. Other treatment options include gabapentin, or similar antiepileptic drugs, and opioids.

So my drug options are laid out above. Not to fussy about the options. Basically Parkinson's, Narcotics, and Anti seizure meds.  I'll pass, for now anyway. Not to mention my Doctor is pretty stingy when it comes to handing out pills.


I did find a web site soley devoted to us people with Electrified Legs, AKA RLS. Check it out at http://www.rls.org/

After reading the site suggestions I have a plan to:

Reduce Caffeine, toughie for me, but okay, the website actually recommends eliminating it, Not!!!
Exercise - already in the plan, just need to do it daily
Hot Bath - Try to fit that one in, I have a hard time just using the bathroom in my house
Practice good sleep hygiene - Bed at the same time, Up at the same time
Limit Alcohol - Not hard for this guy
Review Meds that worsen - Apparently Antihistamines worsen it, Benadryll, Gravol, Anti Allergy meds
Diet - Needs to be balanced, hmmm, define balanced, that is a whole topic to itself
Lab Work - Apparently Iron Deficiency Anemia, and RLS are linked.


Trev

Sources:

Merlino, G. ; Valente, M. ; Serafini, A.; Gigli, G. L. Title Restless legs syndrome: diagnosis, epidemiology, classification and consequences.Neurological Sciences. 28(1) (Suppl 1):S37-S46, January 2007.

Garcia-Borreguero, Diego Institution Sleep Research Institute, Madrid, Spain.Tine to REST: epidemiology and burden. Source European Journal of Neurology. 13 (Supplement 3):15-20, October 2006.Gemignani, Franco; Brindani, Francesca; Vitetta, Francesca; Marbini, Adriana; Calzetti, Stefano Institution Department of Neurosciences, University of Parma, Parma, Italy. Restless legs syndrome in diabetic neuropathy: a frequent manifestation of small fiber neuropathy. Journal of the Peripheral Nervous System. 12(1):50-53, March 2007. 

 Schapira, A. H. V. Institution University Department of Clinical Neurosciences, Royal Free & University College Medical School and Institute of Neurology, UCL, London, UK  RLS patients: who are they?. European Journal of Neurology. 13 (Supplement 2):2-7, October 2006.

Satija, Pankaj; Ondo, William G. Institution Department of Neurology, Baylor College of Medicine, Houston, Texas, USA. Restless Legs Syndrome: Pathophysiology, Diagnosis and Treatment.[Review]
Source CNS Drugs. 22(6):497-518, June 01, 2008.

The Lifespan of a Fly - Seriously!

So as many of you know I "Flip Flop" back and forth between Pump and MDI. 

This past week I have been Pumping.  With nice even sugars to boot.

Until last evening.

Pump infusion sets are like flies they have a very short lifespan.

I head to work yesterday knowing the life expectancy is quickly diminishing as I was supposed to change prior to leaving for work.  I glanced at the site, and made the executive decision to wait until after work or lunch hour.  You'd think I'd learn already.  As I mumble to myself, I'm such a dumb ass.

The site did look OK honest, it did. But looks can be deceiving. My glucose that morning was in range, lunch high normal range, no biggy though, then pre supper was 14 mmol(multiply by 18 = 252) You'd think I'd act at this point, but noooo not I.  I bolus for the high, and head out for some groceries.

Spend the evening watching a contestant on American Idol being evicted off the stage. While I enjoy my snacks etc. 

I go to bed.  I know your thinking, this guys an idiot, he should know better. But sometimes, life just carries on and diabetes is left in the background. In any event.

I wake up with heart burn at 5 AM. I know immediately I'm high. I test and I have now entered the 25 mmol (450) range. I now come to my senses, kinda hard not to now, and yank the site. Take 10 units of rapid, and 13 Levemir, down 2 large glasses of water, let the puppy out to take a leak, and hopefully a poop, and go back to bed.

I woke up feeling like I'd been run over by a truck.  I ask myself WHY do you not do what you tell others to do. 

I equate the day after feeling as a kinda diabetic hang-over, tired, upset tummy, headachey, dehydrated.

AND like any hangover, I say I won't do that again.  Until next time that is. 

I have to remember that Pump Infusion Sets have the Life Expectancy of a Tiny Fly.

Cheers!

Trev