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Not Once, Not Twice
Could today bring with it 12 times normal human strength? Perhaps the number varies from day to day & year to year. How about 12 times the acceptance? Good question. Today is my 12 year diaversary. Of course I am never celebrating type 1 diabetes ever however I do choose to be indescribably grateful for getting to be here to see the number 12. It has been a hell of a scary 8-12 months as I have shared. After 12 years I have not found the magic formula to getting diabetes to frigging cooperate. That is the only scientific fact I will share today because well, hey, I am no science guru & that is a huge understatement. (yes, another run on sentence ha! Ha!) This was the year thankfully that last February I gave myself permission to swear as much as I wanted during those brutal dealings with type 1 that go sideways. Swearing has helped. There has been a ton of swearing from this tea drinking character since last February. For sure the cursing has ramped up greater than 12 times!
This morning I shared during a coffee outing with my coffee buddies that today marks 12 years since I received that dreaded diagnosis of type 1. The response was, “wow, it doesn’t seem like 12 years.” Being a self-professed rascal meant that I immediately naturally responded, “it feels like 40 years to me!” Then I received a well-meaning, “at least type 1 has never stopped you from doing anything.” I admitted that in fact it has temporarily.
Let’s face it, there are occasions that are do-overs thanks no thanks to type 1. There are those times when shit absolutely happens like a recent complete technology meltdown of my cell phone, sensor and smartwatch thus leaving me with no ongoing blood sugar information for 3 hours. (other than the fingerstick tests that I did every hour). It meant that I had to abandon my plans for the rest of the day when I was out last week and instead go home to spend a couple of hours fixing my tech so that I could safely go to bed. Then there are those days from hell when blood sugars go up up and away & the water level of Lake Ontario goes down as I try to keep ketones away. And the brute of brutes as far as I am concerned are the lows from nowhere thus stopping me from keeping time commitments. I detest those suckers. You know exactly what I mean. The blood sugar lows while in public are humiliating to me even 12 years later. As I shared in my last posting, I will tell people from now on if they are staring that I am on my way to rehab. That is what rascals do to cope sometimes…humor on purpose. Having plans derailed happens often enough honestly. Over the years my blood sugars have become more erratic even with my unwavering efforts & problem solving. The bottom falls out of my blood sugars by some of the weirdest things including sometimes when I am sick which makes no sense. The other thing that drives my blood sugar down down down is stress or a sudden noise & stuff like that. Good luck getting the world to cooperate with that. Okay okay, this is no woe is me. Thank goodness big time for sensors. Every type 1 person should have access to sensors period. The choice of course is each persons to make as to whether they wish to wear sensors or not. The thing that I am passionate about however is that type 1’s should never need to worry about getting proper access to: insulin, test strips, sensors! Although it is no love match with me & the sensors that I have been wearing for 2 years, I know there have been countless times that I literally owe my life to them. I am excited about trying out the Dexcom G6 very soon. My order has been placed so it will be an early Christmas gift!
Over the past several years, many fellow type 1’s have shared their stories of alarm burn out. I get it man. Some nights my sensor alarms will go off 10-24 times= nominal sleep. The great news is that basal IQ is slated to be available after training in February in Canada. I cannot wait to see if that feature helps with sleep. I remain hopeful.
Today, as I briefly reflected on these past 12 years thankfully the moments that stand out with a neon sign are some of most treasured times. I have gotten to see 2 sons graduate from elementary school. One of these sons has also graduated from high school & is currently attending the same university as I attended. I have gotten to hear lots of laughter from our 3 sons. And, I will share with a smile that our home has oodles of young son art work. It has been a joy getting to watch our youngest son play baseball year after year & getting to cheer at just the right decibel. Our sons were 10 months, 3 years old, and 7 years old when I was diagnosed. A lot has happened in their lives and I got to be here thanks to Dr. Frederick Banting. Our sons have heard me say many times that life is not perfect for anyone. Expect struggles. That is the full spectrum of life. Expect joy too. Expect it all. Prepare to meet up with struggle. And struggle can make you stronger I have shared with them countless times. Every time, I tell them that is good news that we each get to be stronger. The storms will come. Dozens of times I have run into people who cannot believe that a struggle has come into their lives. They often say things like, “I just want it to go away & why is this happening.” I would not invite struggle obviously into anyone’s life. The struggle will find each one of us though no matter how cautiously we live & how prepared we are. My experience is to look it right in the eye & deal with it are key for me. Everyone is a beautiful original & we each find our way. I know for certain that I am exponentially stronger since November 29,2007. And my heart’s hope is that you know that you are way stronger too.
The acceptance of life with type 1 has changed over the years I have found. It was not a case of going through the stages of grief at least for me. I skipped over a couple of stages however I stayed stuck in anger for a long time. Maybe it was “franger.” (anger mixed with frustration..maybe exasperation). This is one complicated disease to manage & that is an understatement. I thought for a long time that if I was a “studious” type 1 diabetic that I would be rewarded with corresponding blood sugar results. My results for a very long time were beyond disappointing to me. I got punishing results even though I had worked my guts out on micromanaging the hell out of diabetes. The game changer for me was getting to wear a sensor…even a sucky sensor. It was no longer a mystery to me what was happening hour to hour with my blood sugars. If I had to give up on any components of my technology & had to choose just one it would be to keep the sensors.
In just over 2 weeks I have my lab and endo appointment. My diabetes team are amazing. I am always grateful for this. My nurse & endo are outstanding. My A1C is not going to be as good as my last 2 previous ones however it is still in my goal range & my time in range is thanks to sensors within the guidelines. Would I like my A1C to be totally non diabetic? Hell yeah! Is it going to be this time? Hell no! My coming to terms with number goals has evolved. I choose to realize that as long as I have managed with all my abilities that I will accept that I am not competing against my best numbers as far as A1C’s go. My blood sugars have become way more erratic over the years so it would be difficult to compete with past me when I was still in the honeymoon period of type one when my pancreas was working at least a little. That was many moons ago & my lazy ass pancreas does exactly no “heavy lifting”…what a slacker!
Recently I re-watched “Planes, Trains & Automobiles.” That is a movie that has provided many years of entertainment. Definitely, it has been a movie that never gets old. Partway into the movie, John Candy (Canadian actor) says to Steve Martin, “Have you ever ridden the bus?” Steve Martin replies, “no.” John Candy responds with, “your mood is not going to improve!” Some days with diabetes can be like that, right? There are too many days to count where I have done everything right diabetes wise & my blood sugars go to shit. Swearing has helped. Swearing has actually improved my mood because somehow without realizing it I find myself laughing at myself. There are no promises that on any given day blood sugars will cooperate. Swearing has helped this past year. I “prescribed” this to myself. I am not going to give you some sort of cumbia horse shit…just, swearing has helped & it has helped a lot! Honesty about type 1 is also helpful. It was a work in progress to stop hiding that I was having some pretty punishing days. It was simply a balance of how to share this without being a downer, complainer. Again, swearing has helped. It is a dynamic duo of finding humor on purpose & swearing that has gotten me through 2019 aka year 12 of type 1. Hey, the other big factor has been gratitude. My guardian angel has listened to some choice language & still helped keep me alive so that I can keep swearing, drinking strong coffee and oceans of tea & finding things to laugh about on purpose. Maybe it is the strong coffee that is making me stronger ha ha! It can be cool to look back & realize that we are perhaps against the odds incredibly strong…way stronger than we give ourselves credit for. Now that is something to celebrate.
How cool that this year just before World Diabetes Day, Max Domi, who I believe is also on year 12 of living with type 1, released his book, “No Days Off.” I had pre-ordered that book. That will not come as any surprise as I am one huge fan of Max Domi fondly referred to in our home as “the little scrapper.” Our youngest son, Alex & I are huge fans of the Montreal Canadians. Max Domi has been playing for the Habs for almost a year and a half. Some proceeds of Max’s book are going to JDRF. He is one outstanding young man. His book is one of those gems that you cannot put down. I will happily say that I gave up sleep not to diabetes but instead to reading this book for 4 evenings. It was all I could do not to ball my eyes out truthfully. If you have read it you will know exactly what I mean. It is beyond impactful for a person of influence like Max Domi to share in educating others and giving others a snapshot (not slapshot ha ha) into life with type 1 diabetes. It is a very misunderstood disease. I feel very grateful that he wrote this book. It is sure to help so many people including families of people living with diabetes, children with type 1 and others. I love that he did not sugar coat his experiences yet he remains an inspiring young man. Thank-you , “little scrapper.” Shine on Max Domi. We make no bones about it in our home, the loudest cheers are for Max when he scores or assists or makes a great play or really every time he has a shift on the ice.
If 12 years feels like 40 years then I choose to accept the strength of fighting “40 years” worth of the type 1 fight. Day in day out, some days are punishing & other days are a hit out of the park. Struggle & strength…12 years that feels like 40. The strength is a gift. Diabetes is not something I celebrate today or any day. Strength however I get to celebrate bigger today & then every day…some days while swearing.
It has not been once or twice. It has been 12 years of life with type 1. Stronger, more tired, more caffeinated, laughing more, swearing more, fighting. Fighting fiercely the beast of 12 years of type 1…losing some battles knowing they are not the war…never raising the white flag. Swearing yes. Giving up, no. Stronger. Eff you 12 years of type 1. Stronger.
My heart’s hope for you is that you find what works for you on the good days & the bad days leading you to the strength that you have & are continuing to build. The strongest people I know have been through a lot of shit. Some of the very strongest people I am fortunate enough to know have type 1 diabetes. And I include our families. They are living a huge part along side us. Thank-you to my family for accepting this extra swearing this past year. As a funny aside, last month I said to my husband that I had given myself permission to swear more on punishing type 1 days. He smiled & simply said, “I noticed.” Thanks for accepting the rascal that is me. 12 years. Still here. Sometimes swearing. More often laughing. Thanks fellow Canadian Dr. Banting!
Merry Christmas, happy holidays & blessings this month. Thanks for noticing the swearing but enduring it anyhow. I know you get it. Me too ;)
The next sharing will be at the end of January.