My next story post will be delayed due to a new health issue. The nerves in my neck are compressed (ouch!) & my left arm/digits are numb so typing is challenging. Next story will be delayed until at least May.
Be gentle with yourself.
My next story post will be delayed due to a new health issue. The nerves in my neck are compressed (ouch!) & my left arm/digits are numb so typing is challenging. Next story will be delayed until at least May.
Be gentle with yourself.
Does the word “middle” bring any instant thoughts to mind or stir up any feelings? Perhaps the feeling that comes up is one of calling out to friends or family to say that you are right in the middle of a task, treating a low blood sugar, a cry, a laugh, a great movie, the middle of your sentence, making dinner and the list goes on. Is the word middle creating positive feelings & thoughts within you or negative ones? Sometimes the middle is of something great & other times it is a mini or major crisis. Do we like it when we get interrupted in the middle of something? That may depend upon our personality style & a myriad of factors that are going on at that moment in time. What if your middle candle light goes out? What then?
2018 has come into our home like a grizzly bear. Like so many other people in this little corner of the world (and far beyond our corner) the flu appeared on steroids. New Year’s day was rung in immediately with the flu in our household. This year’s flu is one that appears to last considerably longer than ones that I remember from previous years. My husband came down with the flu on Jan. 1st & then 10 days later our youngest son, Alex got it. For Alex the flu lasted over 2 weeks. Our home seemed more like a mini hospital during the entire month of January. Mercifully (touch wood) the rest of the family in our home did not get it yet we all certainly felt badly for my husband & for Alex. The flu is always miserable & this year’s strain is misery on steroids.
Hindsight is 20-20 as they say so silently developing behind the scenes was the reemergence of that newest chronic"365" illness that I had developed last Spring. It had nicely gone into remission last summer thanks to an amazing rehab. Specialist that my doctor sent me to. You will likely relate to those situations in life that you just have to do what you need to do for however long that takes. For me that is coping or hanging in there when it is necessary even when it takes it toll on my body as well as my well being in every part of my life. The perfect storm of a particularly stressful month of December followed by nursing my Dear Hearts with the flu during the whole month of January lead to a reappearance of the room spinning, nausea, almost no range of movement in my neck and down my spine, headaches off the Richter scale & a plunge to my usual enthusiastic attitude. Add on type 1 & I am confident that during December & January, I would have been lucky to see February without my sensor. My blood sugars went beserk going low out of nowhere & high, high, high & never knowing which way things would go from one hour to the next. My sensor literally has saved my life over the past 2 months. That does not mean that I did not have to chase the highs & lows & continue to be the brains behind the diabetes management.(work my guts out day & night) And my guardian angel as always thankfully works nights because my sensor does not alarm with lows in the night which can be deadly. I had more lows some weeks than I have ever had. It rightfully scared me big time. Sometimes we can be supported through times like these and other times not. From day 1 of diagnosis with type 1, I have been fiercely independent about my diabetes management & uber responsible. Sometimes this makes it look to other people that I have it all handled. Being a whole person & not merely my body means though that sometimes an encouraging word, humour at times, a hug or being handed a nice cup of tea with a wink would fill me to the top. We are each human & are surrounded by humans . Sometimes it means that others misunderstand our “365” to the point that they either say something abrasive or worse at times we are completely left out in no man’s land to deal with our struggles. There are times like that in my experience yet thankfully & mercifully the majority of the days someone is sent in one form or another to assure that I am not carrying the boulder of type 1 & the 3 other chronic illnesses alone. On the days when I feel totally alone in the struggle I realize that I am never alone. It may be silent yet love has a silent language that is beyond the support of our human family. (human family meaning all humans of the world)
There have been countless times when a Dear Heart who is struggling with either an illness or another challenge has asked me how I deal with the days when there is that overwhelming feeling of being alone which can lead to discouragement. I always respond with the simple truth. The truth is that I always hang on to hope. I hang on when I have to ask for help to hang on through my faith. And I hold on to my faith & hope as though my” life “depends upon it because it does.
This morning I sat down to write. Each time before my fingers hit the keyboard, I put on a wee bit of gentle music in the background & light some beeswax tealight candles. Last Christmas our youngest son shopped for each of his family members at the Christmas shop that his school had set up. He was so excited to choose something special for each person all by himself. He was bursting once he purchased the gifts & insisted that everyone needed to open up the gifts from him immediately. It was 2 weeks before Christmas. Of course we opened them because it mattered to him. What matters to our loved ones matters. My gift is spectacular & precious to me because he chose it with such love. I opened it & it is a candle holder that holds 3 tealights and on the outside of the holder are the words, “peace be with you.” Yes please. Peace is a gift that we can give to one another if we allow ourselves to be a vessel of peace I passionately believe. The 3 candles are meant to represent “faith, hope and love.” When I lit those 3 candles this morning I walked away & when I returned I noticed that the hope candle had gone out. Immediately I relit it. And I thought to myself, “we always need to keep our hope lights lit.” Do we get help with keeping the hope light lit? Sometimes we do get help from our human family (human family meaning humans of the entire world). Sometimes unfortunately it does not happen. Do we ever have to keep it lit by ourselves? We each will answer that question for ourselves. I am a child of God. When I pray and ask God to light my hope light for me through his mercy & love He always does. He lights my hope light so that I know that yes many days are difficult but I am not alone. And He gives me His mother each day to carry the burdens and love me too. So yes, the light in the middle is the hope light & yes on the good days it burns brightly & on the bad days it somehow no thanks to me burns even more brilliantly.
My heart’s hope for you is that you know that you are loved every moment of every day. Keep your hope light burning always.
Peace be with you.
Always be gentle with yourself. On a bright note, my rehab. Treatments have begun again so hopefully the world will stop spinning at such a velocity. Also, on a positive note because I have had to slow down during February I have read more enriching books this month than I read all of last year. Don’t ever let yourself lose hope. Never doubt that you deserve love & are loved. The next story sharing will be on April 23rd. Keep your hope.
Happy New Year!
Hopefully you are able to avoid this awful flu going around. Two of my family members have had the flu since Jan.1st & continuing. My story post is therefore delayed until next month.
Have a gentle week.
Life can be one eclectic adventure. My home & life are like that. How about you? My spice cookie aroma-filled home was owned by 7 other families before we found our family home. We celebrated our 11 years of living here last September. We love our home madly. It is far from perfect to the discerning eye of the critic as it has a real need for some fresh paint inside & attention to our less than perfect gardens outside however what the heck is perfect anyhow? Being a sworn off perfectionist after attempting to live that way for years before I knew better, I just plain relish in the beautiful mess within our home & our lives. Of course I would never welcome type 1 diabetes but it too is part of the mess which teaches me to keep my feet planted firmly on the ground & reminds me to laugh at the mess & even embrace it daily. Type 1 has taught me that life is precious & to live a genuine life complete with the messes. Type 1 has resulted in me swearing more & laughing more & caring not one iota about the critics that surround many of us throughout our lives. Sometimes we have the critic living within our own minds. If you have a critic living in your head, I too had that experience magnified for decades until I gave it the big heave ho. That lightened the burden because we really need to be surrounded by sincere encouragers including finding it within ourselves to lift ourselves up. Diabetes can be brutal so let’s be gentle with ourselves as much & as often as we can.
Who amongst us is going to admit that if it weren’t already a pipe dream to achieve that Norman Rockwell Christmas that mixing type 1 into it puts an exclamation mark at the end of that thought big time! Type 1 during the Christmas season can be hell in my experience. First of all, the excruciating high & low blood sugars roller coastering for generally 2-4 weeks during the “jolly” season is trial worthy & swear worthy. I would love to love the Christmas season more yet for a decade now Christmas is an especially tough time maneuvering with. There is the Christmas shopping lows where I never seem to realize how much walking I have done & then feel the shakes, sweats & resemble a junkie coming off something..all in public. I detest type 1 in public & the responses that people give you. Forgive them I tell myself after the low blood sugar has been treated. They think they are seeing someone who is drunk or impaired & why would it occur to them that what they are actually seeing is a person with type 1 diabetes whose brain is starving for glucose & is fighting an unforgiving disease. The thing is that thankfully I have learned to not give a rat’s ass what others are thinking when I go into low blood sugar. I am aware & intuitive of people’s reaction however that is not my responsibility to make others understand. My job is to keep myself alive 24-7 with a ton of help from my guardian angel, technology, my circle of Battle Buddies and more. The Christmas tree is up & decorated & every few days another pan of gluten free, dairy free spice cookies bakes in our wee oven. They are truly delicious & they are my guilty pleasure with lemon tea each day during the season. I have not perfected the carb/insulin ratio as each cookie is also eclectic, a different size & shape so I have had to correct for cookies. Cookies are correction worthy to me so I will keep enjoying the cookies throughout the season. In the little bit of shopping for the season, I have gone into low blood sugars 80% of the time making my basal reduction a work in progress. An especially irritating experience while Christmas shopping was during a check out & the check out lady giving me the marketing spiel that I know they have to give everyone about taking out their store credit card. The part that was annoying was trying to keep upright while I felt the shakes of a low come on & her looking at me like I was a lunatic. Just say “no thanks” my inner voice conflicted with another inner voice that was swearing like a sailor on the inside. Sugar, sugar, sugar…needed sugar. Had sugar, but then was slowed down by the fact that by law you cannot drive for 45 minutes after a low is resolved. My family is used to getting a call to say that I am running an hour late due to low blood sugars. Germs abound this time of year & my immune system sucks so usually the Christmas season equals sick day (s) management which is a moving target. Those are the sucky realities however rather than let that part of things get the best of me I concentrate on the best parts of Christmas like having our sons home for 2 weeks & their faces & joy, the beauty of the decorations, time shared with loved ones, favourite traditions, humour, spice cookies & other holiday yummies & most importantly the exact reason that our family celebrates Christmas. I like getting out the pictures of our sons over the years & displaying them. It is hard to believe they were that small especially our oldest son who is quite tall at 6 foot 5 inches…over a full foot taller than his mom. These are our final months where all our sons live with us around the calendar year for the foreseeable future since our oldest son is preparing to go a considerable distance away to university next Fall. For sure he will be home next Christmas & I am sure I will savor it more. I am profoundly proud of the fine young men our sons are. Our lives are far from perfect yet the things that matter are so magnified that I feel gratitude that cannot be captured in words. If this sounds syrupy I find it easy to understand that emotions can be magnified as you realize as a parent that holidays and even each month is going to change over time as children grow, move out & create their own traditions. It is the most natural thing in the world & countless parents have gone through this similar feeling.
As an aside, recently a lovely & enthusiastic Italian lady came out to our home to help me choose some fabric for 2 chairs & a stool that had belonged to my Grandma that my Mom & Dad generously gave to me this Fall. The furniture restoration lady , Maria, told me that she felt a welcoming & cozy feeling in our home. She agreed that our home is eclectic yet she said it is a family home with a feeling of love with a traditional, old fashioned style. She gave me some wonderful advice & as we discussed the wood work that needed significant restoration she said to me that these pieces that had been my Grandma’s are going to be gorgeous when the work is completed. I am terrible at matching things up I confessed. I had some ideas that she gently explained would not flow together & she showed me exactly what would work. I am very excited about these sentimental chairs & stool & I can already picture them & I love that TLC is really the only element separating us from taking something that needs work & a thing of beauty.
By now, you will see that this story sharing is best described as well as eclectic. Something kind of like an a ha feeling hit me this morning. The alarm clock went off the same as any other morning. I detested that sound the same as the rest of the mornings. I reached for my blood tester the same as every morning for the past 10 years. “ Crapatate “ I thought to myself while I said a different word out loud (ha ha). It twas to be the breakfast of champions. My blood sugar was low & I reached for a portioned snack bag of bunny gummies & ate them at the speed of light. Meanwhile, it was time to wake everyone else up in the house. I am a morning person so I kind of fell into the role of the Turkish person who wakes everyone each morning. “Think brain” I felt like demanding as I felt that sense of slow motion that the low blood sugars bring making every thought & step a herculean task. Don’t fall down the staircase, don’t slur words & other prompts were spoken silently to myself. Our oldest son had slept through his alarm so I learned a long time ago to call a spade a spade especially when it comes to safety & diabetes. I told our oldest son that he would have to rush to make it to his bus since I could not drive due to the low. Questions drive me crazy big time if I am in a low blood sugar because my brain is in slow mo. I have learned to tell my family to stop asking me any questions while I am in a low or recovering from one. It is what it is. After about 15 minutes I felt like myself again which is always a relief. Our older sons are pretty great about giving & receiving hugs & I count myself fortunate about this as well. A hug in the morning is a lovely way to start the day. Our youngest son is an especially snuggly person. I love the kind of hugs when the other person does not let go for a long time. Those kind are rare don’t you find? This morning our youngest son gave me one of those kind of hugs & just naturally I said to him, “Freeze time.” I said to him that just like freeze tag is something that he loves to play that I now love a new game called “freeze time.” It can be something as simple as a hug, smile, sip of tea/coffee, smell of fresh baked cookies or anything that makes you feel joy. Freezing time is just stopping for an extra minute or two to take a snap shot for your memory bank…no technology required. This is my new favourite thing…freezing time. I want to collect as many “freezing time” moments over my lifetime. If you are not a sentimental person you can definitely roll your eyes about this yet I make no apologies for wearing my feelings on my sleeve. We each get to reveal as much of our true selves as we choose to.
The comfort with ones feelings is the next eclectic jump I was about to make. Last summer our family made a decision to discontinue cable as mostly we all grumbled that there was almost nothing on that appealed to us. We upgraded our internet & began a subscription to Netflix. I know, I know, we are late to the banquet since people have been doing this for years. My dear heart husband in particular is allergic to change. I will say that I am thrilled with Netflix. There is a plethora of BBC historical dramas & stuff like that that I think is the bee’s knees. One of the shows that I watched recently made me laugh my ass off. I was much more amused than my husband was with the show when he watched it alone. Then we watched the next episode together & he said that my laughter was contagious & he said that there was something about watching me watch the show while he watched it too that made the show funny to him too. The show is called, “Very British Problems.” The episode that I got the biggest laugh from is the one focused on “feelings.” The show described how the British don’t show their feelings & the discomfort to say the least of all things relating to feelings. It may be the sociologist in me that found this fascinating. Although there was a lot of mention of a kind of passive aggressiveness according to the show about the Brits, I can assure you that my British born Gran was the opposite of that. She would tell anyone in no uncertain terms if something was bullshit using that exact word. She was not sentimental like I am yet she was a caring person & a person of natural leadership. I admired her tenacity & the way she told it like it was. She was a hoot. Getting back to the show on feelings, I got a charge out of one part of the program in particular. It was the part about the one & only time that it was/is appropriate to show your emotions as a Brit. You can show your feelings at football games. (football is soccer to us in Canada). At those games, the Brits hug one another & shout & at times cry & let all those feelings out. I kind of thought to myself, it is time to call life one great big “football”(soccer) game then. I cannot personally imagine keeping my feelings suppressed until soccer games. For sure I am allergic to passive aggression. That is like grade 7 girl behaviour on steroids no offense. While I get that I lean more towards the get your feelings out side, I just don’t get the advantage of playing a game of make believe that everything is perfect & great. Please don’t get me wrong, I am not the girl either that people want to run away screaming from because when asked how you are doing you give the whole pathetic woe is me speech. I hope I land somewhere in a reasonable range of being a genuine person & not being a downer. The repressed feelings thing though I really don’t get. It reminds me on a humourous note of a scene from a Monty Python sketch where John Cleese is playing a knight & gets his leg lopped off & he says, “I’m fine; it’s just a flesh wound.” Humour is mandatory for a well balanced me. I don’t want to become too intense so I find humour anywhere that I possibly can. There are many shows on Netflix that I am enjoying in the comedy category. The Dana Carvey stand up for instance I found hilarious mostly because our sons are Millennials & laughter helps as we all get through those teenage years not just loving one another but also liking one another. We are a family thankfully that gets feelings out, resolves things & moves on. Don’t get me wrong, we are far from the Waltons or the Leave it to Beaver type family. Sometimes I use every ounce of my conflict/crisis intervention skills on all of us including myself when we are in the thick of resolving heated topics. And sometimes I completely seem to forget all my skills & end up needing to apologize for being less than tactful. No one has to guess how the other family members are feeling though & we all like it that way. We don’t live in a house of cards that will crumble down if we have a heated debate or many heated debates. Our home is a perpetual soccer game I guess you could say that way.
Fun fact: there is a real “cat hotel” a few kilometers from where we live that I drive by & laugh about every time. That is oddly specific I think to myself that there is a business set up only for cats on a spa vacation. The thing that makes me laugh the most though is that the home of the people that own the business is in front of the building that is the hotel for cats & the “hotel for cats” is at least 3 sizes larger than the people’s home. Okay, I apologize in advance as I am a big time dog person so maybe I should not laugh at this at all. Find something to laugh about though.
What is on your wish list this Christmas? Are any of these things priceless? I don’t want to seem jaded but I don’t put the ornament on my Christmas tree that says, “All I wish for is a cure to type 1 diabetes.” I use to really like to put that one up but now truthfully that ornament kind of serves to piss me off so I just leave it tucked away. I may not always feel that way but this year I do as in 2 days I will have lived with type 1 for exactly 10 years. I have friends that have lived with this beast for decades so 10 years does not necessarily sound that long. The time flew by & yet some days felt like very long days. One of my friends recently said to me that they heard that there is going to be a cure for type 1 on the news. It was not my most grace filled moment as I replied, “Yes, sure, our diabetes community has been promised a cure in 5 years for decades now.” The grace decreases as I added, “diabetes is a billion dollar industry & so where would the motivation come from to end that on the part of pharm. Companies?” My friend meant well & I did add that I thank them for having their heart in the right place. Our youngest son asked me what I want most this Christmas. I answered easily that I just want to see my sons have a joy filled holiday. He smiled from ear to ear & said, “Thanks mom; I love that.” The 2 gifts that I gave myself early in an effort to better manage my health are: a better diet on purpose & a Libre. I have gotten my A1c down .3% in the last month & I have .5% to go to get to my target & I get it that I need help because I have been struggling for well over a year or more now with my A1C. I hope the Libre will help me reach my goal. It is too soon to tell if it will be the game changer for me. I feel a bit like an experiment since in Canada we just got access to this device. It would appear to fall short of the Dex in that it is not blue toothed to send alerts for example to a person’s smart phone when low blood sugar hits or high blood sugar warnings could be of huge benefit in my opinion. Overall though, there are many aspects of the Libre that I already love including: being able to get glucose readings every 15 minutes on demand, the use of the scanner vs the finger pricks allowing the calluses upon calluses to maybe heal after 10 years, neat graphs that give a simple to understand overview of how my blood sugars are behaving, I get to check blood sugars as many times as I want vs being limited by my allowance of test strips, the not leaving a trail of used test strips everywhere I go since I don’t use them often at all when the Libre is attached to me, the not having to change the sensors for 2 weeks, the reasonable cost of the sensors for the benefits to my management, the easy to use menus & the device ease itself, the experience of the sensor not hurting when it was inserted which was an unexpected happy surprise, and more. The jury is in quickly with an enthusiastic 2 thumbs up on this new addition in my experience. I remain a realistic optimist in this life with type 1. The healthier diet is nutrition based & without boring you to tears, it is mostly a case of getting as much nutrition per calorie as possible by adding in green smoothies (but still eating the spice cookies because hey I am human & it is the Christmas season & these cookies are out of this world delicious in my opinion.) I still eat solid food of course but my snacks are really counting when I get so many greens & more as well that otherwise it would be difficult for me to make room for in a day. As you know, I am not a doctor or person with any medical background at all so what works for me will not be the answer for you. Dietary choices are not a one size fits all, neither is my management of type 1 or anyone else’s. We are people not machines after all so we need to customize what works best for us along with our medical teams. My experience is that I feel more energy with these tweaks I have made with the added greens in a day. For sure it was an acquired taste but I have come to a point where I honestly enjoy the taste now & my taste buds are enjoying the taste of my meals in general. The jury is still out on how I can sustain the Cat in the Hat like new additions to my health. Being a human can mean 1 step forward at times & 11 steps back, fall down, get back up, swear & keep going.
May your Christmas or holiday season be filled with hope, swearing where needed & lots of “soccer.” Most of all, my heart’s hope for you is that you “freeze time” every chance you get. Hug a lot longer…sure others may start patting you on the back when you do but you are a “soccer” player, right?
Have a gentle Christmas/Holiday season. May type 1 behave more for all of us. May we be surrounded by encouragers who are compassionate & kind. Let it be us that are the biggest encouragers. Let it be safe to be yourself even at times to swear at type 1 when needed. It is a marathon of a disease in a hectic, expectant time of year. Blood sugars don't care it is Christmas. Give yourself some extra time. Sometimes we are going to be late due to low blood sugars. Don't beat yourself up about that. Be present & be that person who lets go during a hug last. Be a "soccer" player in the best sense of it all. That means saying the things that can be uncomfortable to say like, "I love you." God Bless you & your family all year long. The next story sharing will be in the New Year On January 22, 2018.
Mercy matters. I promise you that mercy matters.
Most of us can relate to times in our lives when we have received or provided an act of mercy. I believe mercy is part of being a more beautiful human being. Some of us endure what can feel like a brutally unmerciful treatment from type 1 or another “365” 24-7 disease. Still other people in our human family are challenged by other struggles of an emotional or spiritual crisis. At any given time we never know who it is out there that is hanging on by their fingertips so for crying out loud we need to recycle mercy every single day I believe with all my might. It does not have to be in the form of the grand gesture. Little acts of compassion and mercy make the difference between stomping on the hands that are hanging on by a fingernail or grabbing those hands & lifting others up.
One of my favourite writers is Maya Angelou. She had one of those rare, beautiful voices that reached others at the centre of their hearts whether you read her words or heard them. The quote that has been a guidepost for over half of my life by Maya Angelou is “When we cast our bread upon the waters, we can presume that someone downstream whose face we will never know will benefit from our action, as we who are downstream from another will profit from that grantor’s gift.” I have come to more fully appreciate & notice the downstream mercy received as the profoundly precious gift that it is.
While my experience is that type 1 is at times monumentally unmerciful I have found that some things in life are like that for reasons I will never understand. Next month I will have been living with type 1 for 10 years & parts of this disease remain a mystery to me. A lot of us can relate to cycles in type 1 that appear & disappear even though we have not changed anything in our day to day lives. At times our blood sugars are going along pretty well and then bam out of what seems like nowhere the diabetes train derails & blood sugars go berserk in either a high or low direction. When I am under extreme stress I never know if it will cause my blood sugars to spike to the clouds or dive underground. Case in point is that last week I was on my way to the lab for a blood test for the not so beloved A1C in preparation for this week’s follow up appointment with my endo and nurse. Bam, at the traffic lights 3 cars ahead of me 2 cars had a small collision yet the sound was really loud. After making sure both drivers were ok & the police on the way we continued to the lab. Once I arrived at the lab I checked my blood sugar to see if I had gone low or high from the adrenaline rush that the crash had surged. This time around my blood sugar plunged 3 full points in 20 minutes taking me very close to going into a low at any moment. The problem was that my lab was not going to be done for another 15 minutes and I was told to continue fasting. Usually I try to not inconvenience anyone ever so it took all my might to make my way up to the receptionist to ask if I could eat a sugar as my blood sugar was going to go low soon. She said, “No, surely your blood sugar won’t drop low in a few minutes.” My advocate voice spoke up & said, “Well you see I dropped 3 full points in 20 minutes so it is very possible that I will go low.” Mercy set in as the lab technologist overhead this & told me to come in right away. I made sure I thanked her for her kindness, had the lab & then gobbled down a portion size of bunny gummies & this low was headed off at the pass.
The jury is still out in my case as to whether it is good or unfortunate that the lab results can be accessed within 24 hours. My lab appointment was last Thursday so Friday morning I rolled out of bed & made a bee line for my tablet to check my lab results online. My follow up appointment was the following Tuesday so that left a weekend as well as Friday & Monday in this case to agonize over the results which were not at all good. I made choices during the summer and early Fall months between being a super mom or a super diabetic. The mom part of me won out. In looking back on my labs from this time last year the labs were similar other than this lab was worse. I know I can get my A1C back down into better range again but I will have to basically fixate on it & put my health in top spot to do it. It pisses me off that this disease gets so much time & effort & anguish but this disease is not one of mercy in my opinion. The thing is that I can be pissed off about that all I want but it does not change the fact that I have to once again pull up my big girl panties & get my numbers back into range. It is what it is. That does not mean that I feel resolve constantly to inspirationally fight the good fight. Sometimes I close a door and cry my eyes out. I feel the frustration, the sadness and exhaustion of this marathon disease & then when I have those feelings out I find ways to get back up & take the reins again. Some days I have to let my emotions out to rise back above the circumstances. None of this is in a pity party kind of way. I just plain know that for a sensitive soul like mine that if I squash my feelings & don’t let them out that I will be miserable. And miserable is miserable so that is not a choice. I am a dust myself off kind of gal after I feel my feelings & acknowledge the truth head on. Frankly I don’t have much respect for faking behaviours or cowardly not facing feelings that come into my life so I take the hard road to avoid the harder road. The part about receiving lab results within 24 hours that is great is that if the numbers are good there is extra time to celebrate a win. On the flip side of that is that if the results are less than stellar it provides extra time to either mentally beat myself up or be bummed out about it. That is life.
Many fellow friends of mine who live with type 1 diabetes describe their visits to their endocrinologists as that of going to the principal’s office. There is likely a kid inside most of us that can relate to that feeling. As a humorous aside, over the years being a mom to 3 sons has meant trips to the principal’s office for me as a parent too & that sinking feeling like that of a kid being called into that office. Let’s just say that it is rare to get called into the principal’s office for accolades. As another aside, the principal at our 2 younger sons’ school is awesome & I take my hat off to him in respect. When I arrived for my follow up appointment yesterday with the nurse & endo. I was greeted with a smile from my nurse. She is a gem & thankfully also has a sense of humour & I feel so at ease with her. She asked me how I was doing & my reply was “ I feel like I am going into the dentist’s office knowing ahead of time that I have a cavity.” She laughed because she had already looked at my lab results. I pinch myself because I have an amazing nurse & endo. that treat me with respect every time I have a follow up. I feel like I am still the manager of type 1 & with my stubborn personality the last thing that I would enjoy is feeling like someone was making choices for me or taking decisions out of my hands. My endo. & I just call a spade a spade & I come in with a plan as to how to improve my numbers. As another aside, I was disappointed to learn yesterday that yet another pump company has folded leaving our community with fewer choices on pumps. A year ago, Roche exited the pump market (that is the pump I have) and then yesterday my medical team shared with me that Animas is going out of the pump business too. In Canada that leaves us with merely 2 choices which is a bummer. I have just over 2 years life on my current pump & then it looks like I will have a pretty simple choice to make: either Medtronic if I want to continue with traditional tubing or the Omnipod. I am going to wait to worry about that for now since I have a lot of living to do before then. One new thingamajig that Canada has received approval on as of last month is the Freestyle Libre which could save my callused fingertips in a major way. I am going to apply for potential approval for that…callused fingers crossed. It will help give me a snapshot ( if I am approved) of blood sugar trends without analyzing the hell out of it via the software in my current pump program. Simpler is better & a snapshot helps me to make decisions without the complexity of my current software. Still I remain the brains behind decisions of increasing or decreasing bolus & basal which is a task many days of herculean brain strength. My math skills have advanced exponentially over the past 10 years. That is a hilarious surprise to me since I had been so weak in math in my youth. The thread of mercy during my follow up appointment yesterday is that when I go to the Diabetes Centre at our local hospital I am treated with dignity, a smile & a touch of humor built in. I joked as well with my nurse when she asked me to step on the scale. I don’t know too many gals who are eager to get weighed & I am no exception. The token good news for this visit is that I managed to lose 2 lbs. Although that is not much, at least it is directionally positive. There were several negatives on my lab results aside from the rotten A1C. I have a plan to try though & I came up with it so I continue to love just plain having choices.
The greatest mercy of all came from someone that I dearly love at an unexpected moment last weekend. Before I share that with you, I will add that our family received mercy from strangers last weekend as well & that too was unexpected. Our oldest son is currently researching universities to potentially attend next year. The fun part of that process is being able to go on tours of the universities. This past Saturday was a favourite tour (big time biased). This tour was one that was rare in that all 5 of us in our family went together. It was of my husband’s & my university, UW. We wanted to make sure that our oldest son got a tour from a current student versus his biased mom & dad. We booked 2 tours. The first one was a general tour of campus hitting most of the highlights. We added onto the tour afterwards by pointing out all the best coffee shops on campus as well since our son Matt is a coffee hound like his Mom. When we arrived for the second tour there was some initial confusion about where the tour guide was. Our family stood outside looking around & there were countless students that stopped & asked if they could help us out. The original tour guide could not be located so 2 students who were planning on doing a mock orientation tour did the real tour instead. The second tour that was lead by a current student was of a wonderful residence on campus. That student’s name was also Matt & the 2 Matt’s hit it off right away & the residence would be a wonderful place to live that’s for sure. Getting into university these days is a challenge since the top schools require 85% or more just to get in. Fortunately, so far our son Matt is maintaining an average exceeding this standard. It must be stressful to compete all the same. The other university tours continue over the next month and a half & it is an exciting time for our oldest son. Wherever he ends up I know he will have an incredible experience. By Saturday night while I was at home getting ready for an earlier sleep time I was hit with an overwhelming wave of sadness. It did not have anything to do with the day we had had which was lovely as a family. It was rather the looming bad news that I had received the morning before when I saw my lab results. Sometimes frustration, exhaustion and sadness intersect into what I described Saturday night as over sadness. (not to be confused with depression). My feelings were very intense & I had a big cry in my room with the door closed. Our middle son has a tendency to treat closed doors at times as open ones & burst in at any given time usually because he is bursting to tell me something. In this case he had just come in to say goodnight but he noticed that I was having a cry. Sometimes I shake my head while kids go through the teenage years. Our middle son can be a master debater at times & say some things in haste that are not the nicest but at the core of his heart he has a rare & pure kind heart. He asked me what was wrong & I just said that diabetes had made me over sad at that moment. He gave me a hug & said, “that happens sometimes Mom so you can hold my hand if you want to & squeeze it.” Yes that is exactly mercy & love perfectly given. Isn’t that what so many of us yearn for…a kind, caring hand to hold on to & to squeeze.”
Mercy matters & my heart’s hope for you is that you have or find that hand to hold on to & give it a squeeze. Just like putting on the kettle does not solve everything, the hand to hold on to and in my opinion a cuppa does make it all at least bearable. And then we dust ourselves off & get back in the marathon a little beaten up & a little stronger somehow.
Be gentle with yourself. Remember to show yourself mercy too. The next story sharing will be on Monday November 27th. Thank a veteran on November 11th . I feel grateful to live in a country filled with the profound freedoms in my wee corner of the world thanks to each of our grandfathers, great grandfathers, brothers, uncles, and friends who gave the ultimate mercy to our generation.
Today I am building a sandwich of sorts. It has been a while since I shared some thoughts on “paper.” Being an optimist (in a realist non faker kind of fashion), the sandwich is going to look like this: good stuff, real frustrating recent experiences & observations & a happy present in progress. As a sidebar, I never could stand the tired looking sandwich of 2 slices of bread & a few different things in between in a predictable & boring kind of way. Since it is lunch packing season again (for the next 10 months) I found the most creative lunch recipe book recently & I have bookmarked at least 30 pages of that. Not one of the recipes included is one of a black & white kind of routine sandwich. These are fun ideas for adults & kids but in our case I am creating these new lunches for our 3 sons. The recipe book is entitled, “Beating the Lunchbox Blues” & the photos are jazzy & encourage a smile when the bento box or other container you prepare gets opened up. Even if our sons are having a bummer of a day my hope is that they can see that their Mom has tried to stir in some love with pizzazz.
My heart’s hope is that you had a hit it out of the park summer. Our summer here in my wee corner of the world was different. That does not mean good or bad, just different. The parts that I loved big time all have the same thing in common…seeing the smiles during the little moment moments. Our youngest son, Alex, 10 now is addicted to baseball. He practices every single day. We found a couple of local batting cages & he practiced some more. His baseball team won the championship this year & the picture in my memory of that final win is etched in my heart along with the tired yet exuberant smiles of those 10 year olds holding their trophies. It was pretty cool that Alex’s team was The Blue Jays & as I have shared lots of times, that is our favourite team in the MLB. Alex & I got to go to 3 Toronto Blue Jays games at Rogers Centre this past summer & we had an absolute blast. Alex “aka” the Alligator got to have swirl ice cream all 3 times served in the little replica Blue Jays batting helmets because hey you are only 10 once. Alex was able to “score” practice MLB baseballs 2 out of the 3 games mostly because he dressed up in his Blue Jays baseball uniform head to toe, pants tucked into socks and all Kevin Pillar style minus the beard. He was and is seriously cute. All electronics were tucked away & replaced with a good old fashioned game of catch in our neighborhood. I even got my own glove this summer which delighted our resident 10 year old. Health-wise, I finally got into the treatment program for the dizziness, nausea & weird illness that had plagued me previously for many months. There are some days that are still not driving days let’s say but those are only a few per month so that is great news after living and frankly feeling like many aspects of life were involuntarily on hold) with all those yucky symptoms for months & months.
It was a different kind of summer from previous ones for us. Our second born son, Brian officially became a teenager this summer. We celebrated his birthday for a week. He loved that. Now there are 2 teenaged sons living here yikes. Seriously, we are fortunate because our oldest son, Matt is a studious, kind –hearted, young gentleman with an eccentric sense of humor with a flair for engaging conversation about interesting topics & is always up to date on what is going on politically in the world. He loves coffee & we love going to coffee shops every once in a while & just chatting & laughing. I am going to miss him fiercely next year at this time when he is off at university. Yes I will be the Mom dropping him off & then sobbing up in the car afterwards. His room looks like a cyclone went off in it but thankfully there is something called a door that I can simply close & try not to sweat the small stuff like messy boys’ rooms. Brian, our newest teenager is all about not getting a haircut, playing the drums & guitar & listening to music & talking about music & started going to concerts over the summer. He is a cool young man with a natural talent for listening to music & then being able to play it right back. He is a hoot to watch on his drum kit because he reminds me of “Animal” from the Muppets. He bangs those “skins” in a way that looks like a huge amount of fun. He has a natural flair for other languages too & has chatted with friends who speak French & Spanish seamlessly. And yes I will be that Mom next year who drops him off for his first day of high school & then goes back to the car & has the alligator tears. Happily, all 3 boys humored me big time on the last summer vacation day by going out with me for glow in the dark mini golf. Since they were such good sports about it, I surprised them afterwards by taking them for dinner at Montanna’s. That is a rare treat because our sons eat like horses but they love that restaurant because of the mud pie dessert. It was kid fun that day. It was more challenging finding activities that would appeal to all 3 boys this summer. They are not little kids anymore.
Okay, so that is the bottom layer of the sandwich. The middle part is the type 1 diabetes (insert any swear word of your choosing) stuff. So, there is still no cure yet although it was supposed to be cured 5 years ago for every single person since 1920 something (tongue in cheek remark). If you live with diabetes you will have been hearing that a cure is 5 years away for as long as insulin has been around likely. That really (insert swear word) ticks me off. A new gadget will be available every 5 years or less for sure. Gadgets are gadgets & cures are cures & they are not the same (insert swear word)! Even after having type 1 for 10 years now, it can still serve me up a curve ball. This past summer I learned something new about the type 1 beast. I learned the hard way that when I am in a low blood sugar doing what is smarter for me to do is counterintuitive. Specifically, you know if you live with type 1 that when there is a low blood sugar happening thinking straight is beyond belief difficult. The thing that I experienced over the summer is that when I was in low blood sugar & in the process of either getting ready to treat it or was in the middle of treating it that if the phone rang or the door bell rang I answered them immediately & did not or could not express to the person I was communicating with that I was in a low. My new homework in progress is to find a way to either ignore ringing of every variety while I am in a low or communicate the low & treat it immediately somehow. (I feel like Homer Simpson stupid sometimes when I am in a low). Then there is the trouble with not wanting to offend anyone. I have never told someone when I am in the middle of anything(aka have previous plans, am busy, etc) but instead I always drop everything & focus on the other person. Also, I am never the one to say, “I have to go now.” What is that all about??!! I guess it is some leftover doormat behaviour that I still need to work on. One thing at a time though. Priority one will need to be the counterintuitive action of treating a low & ignoring the rest because also passing out is not polite (I am joking because humor is a great thing). Just this morning the doorbell rang & I answered it although I could feel the unmistakable signs of a low blood sugar. On the other side of the door a cheerful fellow in a business suit was holding an iPad & said that he just needed 45 seconds of my time. Had I been thinking straight I would have known that there is no way it would be a 45 second interchange. Sure enough, it was a fellow with the Jehovah’s Witnesses & he got polite me not wanting to be rude yet trying to bring the interchange to a conclusion 10 minutes into what he decided could be a debate. Finally, I said to him that I was sorry but had to go to treat a low blood sugar. I am sure he has heard everything yet finally that counterintuitive “save yourself” in a more physical kind of urgent way came into focus & I went & treated that damned low blood sugar & did not give a rat’s ass whether he thought I was blowing him off with a story. Seriously, I have to make treating lows number 1 though I have learned.
Most of us have heard the phrase, “no man is an island.” If we live with a “365” like type 1 or another chronic illness there may be times that we feel like an island. I know I felt like an island big time for the first 2 years of being diagnosed with type 1. Finding another adult with type 1 was like finding Waldo. There were days that I felt like a complete freak because I would either be having an extreme high or low blood sugar & felt like complete shit & people around me did not get it or really want to try to understand what that was like. I had not found my circle of support & that felt like isolation in a crowd. Part of it I realize as well was my attitude. I could not understand why people responded or reacted the way they did sometimes with such detachment or coldness. Here’s the thing though & that is that I expected people to get it on their own while I soldered on saying things like “I am fine” while crying behind closed doors. I was the poster child those first 2 years for over the top positive statements & yet hiding the despair & going underground on the super shitty days. But still I thought on some illogical level that people would see through that & offer up encouragement & connection. It did & does not work that way in my experience. I get how it feels to experience the sting of feeling alone & I decided after those 2 first years living with type 1 that I would never experience that again because I actively found ways to build a strong circle of support from a myriad of sources. Along with that decision I also promised myself that I would actively find ways to reach out to others who felt alone within the diabetes community & outside as well. This past summer I had many heart connection conversations with a dear friend of mine who has many health challenges (not diabetes). She asked me in our most recent chats if I ever felt like I was alone in some health challenges. I told her that she was preaching to the choir. We were able to connect on a real human & heart level of “I get it” & man does that feel freaking amazing! My experience is that the “wrong” crowd around me can still cause me to feel like an island so I make sure that I find ways to get around influences that remind me that I am the furthest thing from an island. That is where the circle of encouragement comes in. Part of that circle is people & part of it is tools that I have found that strengthen my hope & knowledge that I am not alone & most certainly not a freak. And yes part of that circle is an arsenal of humorous content…mostly dvds of stuff like Monty Python, stand up comics ranging from several Canadians to U.S, Scottish, British & Irish comedy routines. The best kind of exercise for me is laughing my ass off. (My swear jar continues to grow).
The whip cream (in my case coconut based whip cream due to dairy allergies) on the top of the sandwich is my non plan for this Fall & Winter. This is the year that I have decided that I am not going to micro plan ahead for Fall & Winter. These next 2 seasons are going to be seat of the pants seasons for once. (With some logical parameters of scheduling family stuff aka taxing kids & stuff like after school on days that this requires). Maybe in the Spring I will get back on track for planning a special trip to Quebec City to celebrate a milestone wedding anniversary (my husband’s & my anniversary celebration that due to my illness last Spring & most of the summer had to be delayed likely until next year sometime) for next summer. Although I cannot speak much French I just loved going to old Quebec a few years ago. There are parts of the trip that I wish to do again & other parts that we did not get to do last time because our sons said “that’s boring.” Yes, I would like to experience those “boring” things & also drink oceans of espresso & super strong coffee that melts your spoon. Whether I get to go next summer is up in the air but in the meantime my only plan is to be more present in every moment of every day including the moments when I should eat a fast acting sugar at the speed of light to bring up a low. Some things are easier by nature to be present with & for me at least, diabetes is still a work in progress. Thankfully I do 10-12 blood tests a day so even though my blood sugars are a dog’s breakfast, I have a pretty good idea what is going on (even at night when my beeping alarm goes off for a blood check at 2:30am). Yes I hate that ringing the most but what I hate worse is knowing that waking up each morning is not guaranteed so I am just giving my guardian angel an assist by doing the middle of the night check in. There is no guarantee in this life & it is bloody scary when you have type 1 diabetes in my experience just plain going to sleep at night for obvious reasons. I don’t obsess about this but I don’t pretend that I don’t live with a life threatening disease either. I have lost many friends that are still so young to type 1 in the past few years. It is challenging to decide for 2 seasons to “take it as it comes” as the Brits say but it is time I feel to be in the present completely. That is difficult at least for me to do I have found but profoundly worthwhile.
My heart’s hope for you is that together we all make sure that we take action immediately to treat all low blood sugars like the number 1 priority that it is. And I hope that you have a circle of encouragement that keeps you & your hope strong. You are not an island. I am not an island. We are in this together. I get it. You get it. Thank God.
Have a gentle start to your Fall season. The next story sharing will be October 30th.
Do you like having smoke from any source landing squarely in your face? Most of us will reply with an emphatic “of course not!” The aspect about blowing smoke that I personally detest the greatest is that experience of someone blowing smoke in another sense. It is the activity of either being around people who simply cannot handle the non Suzie sunshine days in one regard or another. As I have shared countless times, I am naturally an enthusiastic person. There is a difference between being genuine & blowing smoke though big time. Every morning that I get to wake up is a gift. I get it in an acute way that there is no time for nonsense. You may share this view as well if you live with type 1 or another life threatening disease & the erratic blood sugar difficulties & most especially the scary as hell ones that happen in the middle of the night. Waking up is not guaranteed. Type 1 has changed my life in ways that are often difficult to fully put into words. There are parts of this disease that have placed me light years ahead in terms of priorities, what I know is important, the feistiness to refuse to partake in “reindeer games” or hang on to petty grudges or grade 7 girl type drama. None of us know how much time we have period. Please do not get me wrong, I am not intending to be dark about this however being all Suzie sunshine & denying the truth is a waste of my time I feel. Some days are a battle just to keep the process engineering of our blood sugars in some sort of check. If I don’t get my feelings out in some sort of healthy way then I often feel like I could not function in any meaningful way. And as you know only too well, pretty much everything affects blood sugar levels & stress is a biggie.
Each one of us is a beautiful original. We learn life lessons in a fashion that is all our own. Along the way my experience is that life goes smoother when I remember to keep my trust circle small yet mighty. That really boils down to the fact that I get to choose who is an encourager (or a balcony person) to share the full deal with & who has historically been a basement person who thrives on nonsense, pointless drama & appears at the core to give the metaphorical kick when a person is at a low point. I thrive on knowing that I get to choose for the vast majority of the time which type of person is in my circle. There are times when most of us however must experience time spent with negative influences. When we are not feeling tip top that is a herculean task. Thankfully the everyday heroes in our lives are there to more than balance things out. I take no one and nothing for granted & daily I am grateful for Dear Hearts & little yet meaningful moments. My sons most especially are indescribably everyday heroes. I do not see them through rose coloured glasses & they know their Mom is no fading flower that they can get one over on. When the chips are down or it is really important they amaze me. I love them with all my soul. Our lives are far from perfect pretty much like most people.
I will not blow smoke at you by giving a big fake, Pollyanna story about why I have been off the radar for months now. It has been a struggle & that is the unadulterated truth. There are a tiny number of people that I share full details of the depth of what is going on yet at the same time I refuse to paint on a fake smile & pretend that things are perfect. Plan c really is largely for me going under the radar to all but a tiny circle of trusted ones when things get really brutally challenging. For months now I have had some sort of health issue that initially presented like the stomach flu but then lasted & lasted. Thankfully I have not been one historically to get much of a headache but over the last few months the headaches I have experienced are off the Richler scale. Then the lack of balance & the room spins added in meant constant nausea. It is not so much that people are insensitive to our health challenges at times as maybe being naïve or that age old fact that a lot of people don’t get it until it happens to them. Socially, I did what I had to do. The stomach like flu symptoms of course as you know already are on top of type 1 & any other autoimmune 365’s that we already juggle day in day out 24-7. Naturally like a toddler with a tantrum my blood sugars went zany & the psoriasis was worse than ever as well on top of feeling like my head was going to explode & I was going to throw up for months. Should we feel the need to apologize for being unavailable due to health realities? That is a frigging work in progress for me. I am a Canadian for starters ha ha & a born people pleaser…proud to be Canadian yet working on leveling out the need to pointlessly people please.
You know I refuse to throw in the towel on any given day & that even when I get knocked on my ass I will get up & continue whatever feisty fight I need to engage in to have the most meaningful life whatever the circumstances. No smoke though. It ticks me off to no end that my health sometimes is so sucky. My health is not the tip of the iceberg though. Some days I feel stuck with these sucky diseases that make it difficult to at times plan in advance certain outings & stuff. I am learning along the way to add the proviso of I will do my best. That means I have liberated myself from the nonsensical game of comparison. Specifically, I do not expect my best to be the same as someone not experiencing the hurdles that I have encountered many times when it comes to my blood sugars not cooperating. To continue to keep the atmosphere smoke free, I will add with exasperation that I am at a phase in my life that simply seems to be that of the hormones from hell & that means that my blood sugar graph each day looks like a dog’s breakfast. And those are the days when I am trying to learn to be more patient with myself & that too is a work in progress. The light at the end of the tunnel is that I have finally made it to the top of the list for a medical program for the weird stomach flu like stuff & I am cautiously optimistic that things will improve with hard work & time on that front. The blood sugar dog breakfast stuff I am stuck with I have been advised for at least 5 more years. When have we all heard the reference to 5 more years in reference to type 1 diabetes? I have yet to encounter a person diagnosed with type 1 who was not told that a cure was expected in 5 years. There are more gadgets than ever yet where is the bloody cure? No smoke, just the honest feelings of exasperation of yet another person living with type 1. If I had to imagine who would most likely find the cure (not another gadget) but the real no smoke up the butt cure, it would be either someone who has type one or has a child diagnosed with type 1. Love would then be the ultimate motivator in curing type 1. Love can be replenished & does not run out. It is self funded & is stirred in to infinity.
The summer is coming & my everyday heroes are going to be home. I agree with all the people out there who proclaim that our kids grow up in the blink of an eye. Whatever health crap comes my way this summer we are going to have the best little important moments that matter. That is the one scientific fact that I buy into big time. Being loved for exactly being the beautiful, original, genuine self on the challenging days as well as the better days is the ultimate priceless gift that I am thankful to my wee family for. That is the law of love as far as this mom feels.
My heart’s hope for you is that you build a strong circle of balcony people in your life so that no matter what life throws at you they are on your side. Part of love is genuine, unfleeting encouragement. Stay hopeful & know that true strength just like love is replenishable. (and yes, I know I just made up variations on a couple of words & that too is okay) Strength is kind of like when we welcome our children in its infinite replenishment. When our first son was born I loved him at 100%. When our second & third sons arrived into the world (and the 9 months beforehand) my love did not go to 33.3% for each one of them. I loved & love each son at 100%. The same can be said about our reserves of strength. I don’t feel weaker with each health struggle but counter intuitively I feel stronger at my very core. And I maintain a reserve of hope. Do not lose your hope ever. Some days are indescribably difficult yet I have found a place beyond that that brings me to my hope. It is not magic. It is love. It is the love of the encouragers in my tiny circle that help replenish my bucket in a loving often small but meaningful way. That is what I want for you always too.
May your summer be full of hope no matter what hand you are dealt. And may you surround yourself with the balcony people who accept you on your good days and also on the days that suck as well. And may you be unapologetically yourself. Happy 150 birthday Canada this July 1st!! The next story sharing will be the last week of September.
There will be a delay in the next story sharing as last week I became ill with something causing extreme dizziness, lack of balance, brutal migranes & nausea. The next story will be in June. Blurry smiles, Saundie
Have you ever driven a standard shift vehicle? How did that go for you? In life, as in the learning of driving a standard shift car, it can be a work in progress for many of us. As a humourous aside, I will share with you that I tried to learn how to drive a standard shift car when I was preparing/practicing to try to get my driver’s license. That feels like exactly a hundred years ago. My then boyfriend, now husband told me that driving a standard was no big deal. If you can specialize in stalling a car, that is what I would receive an award in. The driving experience with me at that time can be likened to the experience of volunteering to get whiplash. And I practiced & practiced some more & frankly made no literal forward success. Bless my Dad’s heart because he was amazing about my practice parking foul up when I tried to park in between apple boxes & his car was the casualty of that bright idea. He did not get upset with me & now that I am a mom to a teenager I hope that I can have that kind of grace too. Over time I threw in the towel with the learning to drive a standard because I am not made for that model & hey thank goodness for the automatic drive cars that are a breeze to maneuver. Sometimes you need your gears shifted for you. That is what is happening in a parallel world in my life right now…my gears are being shifted for me thank goodness.
How comfortable is your comfie zone? It may depend on where you are in your life or your personality style perhaps. There are some people who gravitate towards embracing change & running towards it & then there are other folks who run from it like they are being chased by a bear. I am somewhere in between those 2 domains…but truthfully closer to being chased by a bear than running towards change. Sometimes I do not want to shift my own gears even when “the devil I know” is sucking me into a vortex of negative. Generally I get stuck in one form or another of “the blues” in the winter months. Maybe it is the Canadian climate. (Or maybe it is that my sucky immune system allows me to catch every single bug all winter long.) Maybe it would be nice to hibernate for the winter. I enjoy about 2 weeks of winter & then I am done with it. As diligent & positive a person as I am, the winter months almost always get the better of my attitude & I get that blue feeling. Then I have to find a way to snap out of it. That is big time difficult. First of all there has to be an awareness of what is happening & then you have to figure out a way to throw yourself a life preserver to get out of that funk. The great news is that I have both self awareness, no level of self delusion, no patience for self denial, am gentle yet bold with myself & thankfully figured out ions ago that the best time to prepare an emergency plan for the blues is way before the blues come to town. For me that means getting that list of pick me ups on paper in the spring, summer & fall months. To simplify that list though I have learned that it all really boils down to this: when I have the blues the antidote is finding a way to bring some comfort to someone else. The thing is that I also realize that being the willful rascal that I am, I tend to do that very much within my comfort zone. It is almost like I bring others into my comfort bubble versus going out of my comfort zone to their bubble of comfort. As a very important caution, remember, the blues are not the same as depression. If you or someone you know has depression make an immediate appointment with your doctor as you can save a life. Save a life always.
In the last couple of months I have found myself sinking into the usual feeling of the blahs, blues & even to the land of the saying that we often hear "the death by a thousand cuts" metaphor…you know when day after day continuously external frustrations are thrust upon us. Sometimes they are mega frustrations or they can be as small as things that just don’t go smoothly for us. An example of a tiny poke would be you need to print something off & it should take a minute & you end up almost having to re-figure your computer. I have had several months of frustrations thrust my way…that poked at with a short stick almost constantly. And I realize that I have a very long way to go in the advancement of the virtue of patience or bearing wrongs patiently for that matter. I have taken a ton of deep breaths & told myself to settle down. It can get to you though. Every single person struggles though & if we get this, we really can simplify what can be done to make our challenges have meaning. For me it is as simple as this…I have to give of my time & heart to others who are struggling & take my eyes off of myself so that I never cave in on myself & become a victim of the struggle. It is okay to feel those feelings of the blues but I refuse to live in that world. (Caution, remember blues are different from depression. If you or someone you know has depression get professional help starting with your family doctor).
There is a saying that you will be familiar with of “be careful what you wish for.” That is melodramatic in my mind. I am a person of profound faith so I look at many things through my faith eyes. Over the past couple of months I have been failing at shifting my gears largely. It has been one step forward & 10 back. Then I realized I needed newer outside my comfort bubble ideas. Yikes I have thought over & over again. Behind the scenes, my gears are getting shifted for me like an automatic vehicle & I know exactly who & what is going on & why. I am one grateful rascal. This past week I found myself way outside my comfort bubble & my heart was so filled up to the top at the same time. If we believe that good things come in threes (which I do on so many levels) then I have received recently 3 “assignments” that are uber outside my comfort bubble. The first one is to co facilitate something wonderful for 4 weeks that is brand new to me. I love talking to others one on one yet I get the sweaty palms every time when I speak in front of a group so more deep breaths & an abundance of tea will be helpful. The second (part a) new experience is a conference next month that I will be the newbie at. Normally if I am going to any kind of conference I have the security blanket of going with at least one friend or even a group in a carry a comfort blankie kind of way. Not this time. I am just going on my own & taking a complete chance that I could have to sit alone for the day (but hopefully not). The second part (B) gear shift is that for the first time I am helping out with a program that lasts until the spring with teenagers. I have always felt that I am one of those moms who relates best to little kids versus teenagers. It turns out that we each evolve or continue to grow up if we choose & want to. It turns out that there is more relatability then I imagined with teens as well. As a neat aside, I have celebrated that we are the first generation of parents that have our teens asking to borrow our music. Our second born son who will become a teen this summer has a huge selection of music & at least 80% of the bands are ones that I love too. It is not that I am close minded or open minded about new experiences but more a case of not having gears changed enough sometimes. The third outside the comfort zone unexpected shifting of gears happened this week when I joined the hospital visiting volunteer program. After the first visit I felt the circle of indescribable comfort. On my worst day I am still so fortunate because I can choose to go out or not but I am not isolated. And I don’t want anyone to feel isolated especially those dear hearts that are in the hospital yearning for someone to come visit. Those I think are the longest days…the ones where people are in the hospital. If you asked me whether I would be a hospital visitor last year or even 6 months ago I would have said without hesitation that there was no way. My gears got shifted though & I am better for it…a better work in progress.
Throughout life & going forward to my very last day on earth I will always have a mentor or really several for different aspects of life. I need wise counsel because I don’t know what I don’t know. In chatting with one mentor recently, she strongly suggested that I take a break from social media & shift gears towards taking on new challenges. I had shared with her that I was tired of saying what seems like the same thing over & over again. This pertains to type 1 diabetes. I feel like I am speaking a foreign language so many times when I try to make a human connection with so many other people when I tell the truth about what is going on with my health. So many people do not want to hear about it. So often people do not want to know that you came close for at least the 6th time this year in not waking up that morning due to a dangerous low blood sugar. It can feel pretty devastating to reach out for support & fall flat on your face because the other person does not want to connect with any struggle. I keep my trust circle small so I don't openly share my struggles but the circle is getting even tinier I have experienced. I need to get stronger I admitted to my mentor. I also paradoxically admitted to my mentor that I was in no state or mood to shift gears & look for new challenges outside my comfort zone. I thought to myself that I would look for opportunities to shift gears this Spring or Summer instead & just hang in there in the meantime. God has a sense of humour & the absolute power to bestow the grace of profound humility. Willful me did not shift my own gears…the gears got shifted effortlessly, mysteriously & quietly behind the scenes. I am one grateful rascal. For sure my diabetes management is still sucking up enormous amounts of my brain power, time & 2 mornings ago I woke up with a banger of a headache & a frighteningly low blood sugar that I was lucky to have woken up at all . It scares the hell out of you when you are faced with life & death every single time you go to sleep at night. I am not alone in that. There are so many battle buddies that are faced with this fact too & we have lost many friends to death over night from an unaware low. That is reality & it is sobering so I know every day I had best make the day count & mean something. And the frustrations are still coming my way in waves yet somehow my brain is shifting quickly to a focus of how the shifts have impacted me as a whole person. I am just plain thankful even within the vast challenges that each day brings. It is not something that I say lightly. Diabetes still sucks in every possible way. My graphs are ugly but my A1C is a challenge that I will never throw the towel in on. And I am thankful to my guardian angel who never sleeps so that I can & can wake up to see each new morning. I take nothing for granted. We each have to shift so many gears when it comes to diabetes management since what works in our management one day or one week can change out completely & we have to figure out new strategies over & over again. We do the heavy lifting for our retired pancreas. Still though beyond that, I feel mysteriously comforted & that gives me strength for every journey. I am getting stronger somehow yet I am not doing it alone.
My heart hopes that you have comfort always for your journey too. Diabetes is tough yet you & I are stronger than words can convey. As always, I am cheering for you.
Be especially gentle with yourself. Challenges are marathons so pace yourself & know that you are a rock star for all you have to do day in & day out. It is a scientific fact that you are an everyday superhero!
In cooperating with the wise counsel of one of my dear heart mentors, I am taking a wee break from social media so my next story will be in the Spring on Monday May 1st. In the meantime I will be cheering for you every single day…on the tough days & the awesome days with diabetes & challenges & celebrations. Here’s a “you’ve got this” for every day until May as well as a hug & “I get it; me too.” And I will say a “cheers” each day with my tea cup to you too you rockstar!
It’s time to reveal some of my more dinosaur kind of sayings. Here comes the first one. Have you ever had “the biscuit?” That saying may just be a bit dated. The more up to date statement may be, “today I feel like a broken biscuit.” Either way, they mean the same thing.
If your list of hobbies includes that feeling of pushing a thousand pound boulder up a hill then you likely live with the beast of type 1 diabetes. For sure I am an optimist & left to my natural state I tend towards being pretty enthusiastic & a promoter of life lived this way. The proviso & constant however is that I have exactly zero patience for faker behaviours. That means that I detest this within myself as well as others. Faking behaviours are really a lie all dressed up so no thanks big time! That means that some days, weeks, months, periods of time in general can just plain suck whether you live with type 1 or any chronic beast. I am not about to tell anyone that my life is any better or worse than it actually is. Some people can handle the truth & some are like the characters that Jack Nicholson directs his line, “you can’t handle the truth” kind of individuals. The truth takes a strong sense of self or confidence, boldness, courage & self awareness in my experience. Additionally, in my case it takes feistiness & being real with me & others. Don’t you find that it is easy to find the people on your team cheering you on when things are going well in your life? A celebration or a party is fun yet how about those times when you need encouragement, a lift, and someone to take the other end of the boulder when you feel like a broken biscuit? How big is that crowd of people? How does it compare in size to that of the cheering, celebrating squad? My experience that the battle buddies willing to sit while I am in the broken biscuit periods of my life is tiny yet mighty. I don’t know of anyone who is built to conquer the big gut wrenching challenges of life alone. I know without a doubt that I for one was not built that way. How about you? So as always we are continuing to get real & keep that way in a determined non victim way.
Life is full of metaphors. If you live with a science or math person or are one yourself then you may be the subject of daily metaphors. That is the land I live in. I live with that type of person & it is a great balance in our home. It balances out the emotional me. Sometimes I need someone close to me that I trust 100% to help me to take an emotional breath at times. The trouble with type 1 diabetes that bugs me the greatest is the way that it plays havoc on my emotions if my blood sugars are crazy low or outrageously high. My personality swing was the biggest clue to me in the first place that something was wrong with my health that led me to go to the doctors to find out that I had type 1 in the first place. I will never forget those weeks leading up to the initial diagnoses of type 1 diabetes. My thoughts & emotions & personality in general were the polar opposite. The physical symptoms were there yet troubled me less than my (thankfully temporary) personality shift. At that point in time I loathed everyone & everything & just found everything to be pointless & pretty black & white versus the creative colour world I had always experienced. It was a miserable feeling & more than this I wondered what in the world had happened to me. I learned long ago through my counseling studies background that when the brain is supplied with a small amount of information the natural tendency is for the mind to fill in the missing information usually with incorrect data. That meant at that time my brain went to the worst possible conclusions all those years ago before I found out my true diagnoses. My mind concluded that I must have a brain tumor or be bi polar or something like that. For sure I was so exhausted from fighting continuous high blood sugars unknowingly. I was one of the lucky ones though who did not end up in the hospital in an emergency situation & find out that I had type 1. When my personality flipped I made an appointment with my doctor & she pretty much thought that I had type 2 diabetes. My first endocrinologist treated my situation like I had type 2 & I just kept getting sicker & sicker until finally it was discovered that I had type 1 all along. I will never forget the first month of knowing I officially had type 1. It was hell. If you have type 1 you will be able to relate to this. As I have shared with you previously, I was diagnosed as an adult when our youngest son was 10 months old, November 29,2007. In going through health struggles this past Christmas I reminded myself countless times that it was way better this year than Christmas 2007. Thankfully in 2007 our sons were quite young & blissfully unaware that their mommy was spending a major chunk of time “talking to Hughie on the big white phone.” My blood sugars were constantly high making for an exhausting existence together with frequent nausea leading to vomiting. I could not stay away from the big white phone long enough that year to even get the Christmas dinner in the oven so we ended up ordering greasy Chinese food. Incidentally, our sons thought this was terrific & I am forever grateful that they remember that Christmas with blissful delight. The show must go on for our kids & I did not fake my way through that Christmas but I did manage to rise above the hell of life before insulin well enough to leave our sons with great memories of each & every one of their Christmas celebrations including Christmas 2007.
How were your holidays this past December? Are you allowed to be exactly yourself whether you are well or feeling like one broken biscuit? We each answer that question for ourselves. As I have shared with you in my last couple of stories, I received bad news the last time I went to the Endo’s office. The result of that news was that I needed to come up with new & better strategies to take care of the brat of type 1. That meant that type 1 had to be in the front of my mind during December which was a major pain in the ass. It is brutal as you know keeping up with diabetes management at times when things are going smoothly. Life throws everyone curve balls. I feel the pressure of knowing that every single day for 6 months or maybe even longer my blood sugars are being evaluated by my diabetes team. (Again, please don’t get me wrong, they are a terrific team). I am fiercely independent & I really hate having to be answerable every stinking day for my blood sugar numbers. I know my team is monitoring my situation closely for my own good because of course I don’t want any more complications. And I know that now that my kidneys are flagged so to speak that I have to try to take even better care of my health management. It is tough though because it means no breaks any day from agonizing over the blood sugar numbers & what they mean. Every week I look at the data to see where it looks like my A1c is landing. It does not stay constant. I try not to beat myself up emotionally when the numbers suck. Some of my new strategies are not working. That is life with type 1. What works for a little while will not necessarily work at all later. To top it all off, our oldest son got really sick about 10 days before Christmas & as I looked after him I felt so badly for him & at the same time hoped that somehow against the odds I would not catch it from him. For people without compromised health a bad cold or flu is not a delight yet few people with otherwise good health can relate to a cold or flu turning into an emergency situation as in the case at times with type 1 diabetes. Seven days after our oldest son got sick & was on the road to recovery I got hit like a freight train with the same bug. The timing was sucky & placed a frustrating amount of pressure on my mind about how this was going to interfere with my efforts towards improving my A1C & take care of the sucky kidney situation. My blood sugars did plenty of freaking out & I tried my best to not judge my graphs during my sick days which lasted from December 22nd all the way through to December 31st. It was disappointing to not be able to do all the activities that I had planned to do with our sons over their holiday break because even afer Dec 31st I was in slow motion battling high,high blood sugars doing 15 blood tests day & night. I have over the past almost decade with life with type 1 tried to keep most of my plans for activities with our sons under wraps for as long as possible because my word is my bond so if I promise to do something with them I do it whether my blood sugars are okay or off the charts high. What I don’t do though is fake my way through. It is possible to have a great attitude yet also tell the truth about it being a brutal day with diabetes. That is what I do with our sons. They have learned compassion towards others that I see all the time & I credit that to them not being shielded from the bad diabetes days. Early on in the diabetes diagnoses I did not let on to anyone when I was having sky high blood sugars or how low can you go blood sugars. Here is the thing though…being a family means that you are a family when there are things to celebrate in life as well as the times when a family member is going through hell. It is as simple as that. I detest smoke & mirrors behaviours & dishonesty & flakiness so I am not playing that reindeer game. It is hard enough managing the beast of type 1. My sons have learned that some days can really suck however no one in our family gets to give up & they know that we each have one another’s’ backs Jack. I would hope that they would have learned that even if type 1 were not in the picture. When you live with type 1 & face the reality that insulin can sustain life or end it (so many close calls in my sleep & battle buddies who have never woken up from low blood sugars) means that there is not enough time for reindeer games, smoke & mirrors & things that simply do not matter. Broken biscuits after all are still every bit as delicious as the other ones. As a humorous aside, our sons get excited when I am making more complicated baking recipes for the first time because they know the baking that falls apart is merely a sampler. There have been times when I have purposefully broken a baked good to supply samplers for the “coyotes” awaiting one of these. There’s a great metaphor. You see, you & I may at times see ourselves as “broken biscuits” or having a broken biscuit day & yet others around us think that we are still pretty damned terrific. Our pancreas may have retired but maybe just maybe we are the ones that “get it” out there…you know what matters & what is nonsense because we have to fight for our lives literally every effing day. That is hard work. We rock if I don’t say so myself.
Blood sugars can play havoc big time on emotions. That can feel pretty messed up. High blood sugars for me fill me with thoughts like, “I am so furious about…” or “Eff off.” Since I am an adult & of course recognize that every thought that pops into my mind needs a governor I do not say those things. Instead I tell my husband & sons when I have high blood sugar that I need a self imposed time out so that I don’t say anything that would be hurtful. Then I work my butt off to bring my blood sugars back into range. That often takes hours & hours & what seems also like oceans of water to flush out any potential ketones. Equally importantly for me, I also have trained myself to stay off all forms of social media when I feel emotional due to high blood sugars. That takes discipline I have learned. You know that age old adage of trying not to make decisions when you are feeling especially euphoric or super bummed out. That is great advice. It is my hope that I learn to be neither an over promise (leading to being burned out) or an under promise (meaning not fully & passionately in love with life).
Here’s a mind bender that occurred to me this past week. Where I have been broken I have found ways to rebuild myself to be stronger than I ever was before. Prior to having type 1 it was my belief that I was built with a servant’s heart. Type 1 added to this in indescribable ways. There is a tendency for individuals to be able to talk to me heart to heart with no worry that I won’t get it. There are no barred subjects. When people around me are struggling they know that they will receive compassion & a heart to heart connection from me even on my broken biscuit days. They get to be themselves in a world that serves up the adage that we should each put on an Oscar award winning performance that everything is perfect in our lives. Now that is pressure that we can each do without. My aha moment of realizing that I am stronger even on my broken biscuit days came to me in a literally shattering moment a few days ago. Our youngest son & I had been out choosing his latest Lego Star Wars creation & 10 minutes after we arrived home we heard a mammoth crashing noise coming from our dining room. We have a built in cabinet in our dining room that had been built by one of the 7 previous owners of our home. One of the shelf brackets gave way out of the blue & half a shelf of stuff in the cabinet broke into what seemed like a zillion pieces. I realized at the moment that given my sentimental heart that some things can be broken & as strong as ever at the same time. It took several moments to come to this conclusion though. It was a huge mess & the only items that I realized that I cared about were the treasures that had a sentimental memory connection behind them. I looked at the broken floral demitasse cup and saucer that had been my Grandma’s. It was beyond repair but not gone. How could that be? The memories of having tea parties & drinking from that cup as a little girl with my cousin who is my heart’s sister along with my Grandma are always safely in my heart. My heart is strong. Things are things & that is all. Love lasts absolutely forever. My memories are the true treasure. The love is the treasure. It is strong & can never break. What a beautiful mess I cleaned up in the dining room that day. And I am one strong beautiful mess of a person too. And I am okay with this. My heart is strong & the love that I have is unbreakable.
My heart’s hope for you is that you too realize that you are strong too “broken” pancreas & all!
Shine on strong battle warriors & be gentle with yourselves as always!
The next story sharing will be Monday February 20th
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