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It was 9 when the Shit Hit the Fan!
November is officially worldwide diabetes awareness month each year. Man, those of us living with diabetes though are aware of this disease every minute of every day whether we are awake or sleeping. Diabetes takes no prisoners so to speak. That is what I already knew intellectually & now I get that in every sense of the word given that it is 9 for me & the shit has officially hit the fan.
My swear jar will continue to fill. Unapologetically I am just plain, raw me especially this month & even more so this week by choice. Do I want diabetes to break me or have a break through (you know it can either break you or you can bend with it & have a strengthening break through). What I am choosing to never do is give up hope in any area of life.
On November 29, 2016 I will be very aware that it will be exactly 9 years ago that I got the shock of hearing those words from the doctor, “you have type 1 diabetes…” As I have shared with you on several occasions, I researched every reputable resource right away to find out what this meant & how I could fight the invisible monster known as type 1 diabetes. I read the stuff that scares you shitless like the complications & the willful, feisty, determined me vowed to do everything, everything, everything within my rascally power to reduce the chances of having to face diabetes complications. My diabetes management is as imperfect as I am however I can say with 100% truth that I have tried with all my might to be responsible in daily management. Some months I have lived like a robot. Those were times before I went onto my insulin pump. One A1C was a gorgeous 6.1%, my all time A plus score. I lived like a total robot with very little fun (& lots of sacrifice of things I loved) to get that 6.1%. For me that was not sustainable because well, I am not a robot in fact. I don’t want to miss out on the best parts of life so that I can impress myself with an A1C that cost me being fully me frankly. Each one of us are beautiful originals so our A1C’s will be different. The other thing is that in order to get that 6.1% I gave up a lot. I gave up invitations to events & tried to control my world by putting a bubble of protection around it. Every bite I ate was towards that nearing a non diabetic score on paper during that time frame. I did not feel fully alive. I remember not laughing much. I decided to be fully alive emotionally, spiritually, physically & stop living like a robot & my A1C went up yet usually it landed under 7% so that was great with me. Again, your A1C is your own. There are different factors that each one of us live with so my goal is going to be different from yours & vice versa.
When I have gone for my 6 month labs & endo & nurse appointments I have been fortunate. I have received those comforting words, “you have no complications & your lab work looks fine.” I have had a few A1C’s come back around 7-7.2% & my endo & I know I have worked my guts out & I share what has been going on in my life & then I just renew my efforts to work towards getting myself below 7% & that usually is where I land A1C wise, say around 6.7-6.9% with responsible management yet lots of fun stirred in as well. Diabetes management has for the most part has been within the top 3 priorities in my life & it needs to be at least for me because complications scare the hell out of me. Why wouldn’t they. That is why hearing the words; “your labs look good” each visit has been priceless & comforting beyond words. I have said it before yet I feel compelled to add in again that I am fortunate to have an extremely outstanding endocrinologist. We go over results from the lab as a team as well as the colourful charts that my husband does up for me that are generated by 360 software for my soon to be obsolete insulin pump (Roche is out of the market for insulin pumps). Since I am an artsy fartsy I usually don’t get most of what the graphs are saying but math is the language my engineer husband speaks . I usually would pause to say, “byoe!” (bring your own engineer!) My husband is a process engineer so he really gets the job my pump & I try to do towards blood glucose control. I am fiercely independent & most of the time I take charge of 95% of my diabetes management pretty much by myself. That means that the vast amount of the time I don’t ask for help from anyone. I do graciously & without hesitation however accept help in generating the 6 month report in preparation for my endo. visits from my husband. I used to ask him as well to do the math to see what my A1c number was going to look like. He has been pretty beautifully accurate. I don’t ask him to do that anymore though because the blood lab that I go to now lets the patients see their own blood lab results within 24-48 hours. I like seeing that report. It takes the guess work out of what the numbers will look like & I get to see if there are any flags & when I see none (other than the absurd sentence in it that I may have diabetes) I feel comforted. I can breathe deeply again.
For nearly 9 years I saw pretty similar lab results. On October 28th I went to the lab & expected to see similar results again. Sure, I was expecting to see something like a 7.2% this time because during October two of our sons had the flu & then I got it so you can imagine that my diabetes management was not near the top of my priorities unfortunately. I saw the escalated numbers sticking their tongues out at me from my glucose meter accordingly during October. I did my corrections & tried to settle the brat of diabetes down with poor success. To my credit I kept ketones away & did not end up in the hospital which is always my goal. I am a proactive person by nature & I hate the hospital, the smell, the look of it, everything. Anyhow, who likes the hospital anyway so I score points for managing flu well enough for it not to turn into an emergency. How about the months of September & October this year. Was diabetes in the top 3 priorities? Not for me I sadly admit. Those months were hell with stresses at one of our son’s schools with as I mentioned face offs galore as well as girl related hormones. Adrenaline shot through my veins Monday through Friday & that created high blood sugars galore & I saw those on my glucose meters. Realistically, I knew that I was not going to see an A1C this time under 7% but I thought I would be close. I was after all still doing 10 blood tests a day & making insulin corrections day & night. Diabetes does not care though. Diabetes does not afford itself to be put near the bottom of the list of priorities while other areas of life are placed at the top of the list. I learned that I cannot afford to let the bullshit of life get in the way of my diabetes management. The price is too high. My lab results were available for me to look at on line on October 30th so I had a look. As the results sunk in, I literally felt like I was going to throw up. My A1C was the second highest only second to the day I was first diagnosed…within .2% of my initial diagnoses. My eyes made their way down beyond the A1C which was still a shock to me. I actually wondered if my labs had been switched…classic denial. Next, the flags appeared. This time it was not the ridiculous one saying that I might have diabetes solely. Of course that was still there but more revealed themselves…complications or what I call at nine the shit hitting the fan for me. Nine years into this sucky disease, I got a kidney flag. More medication, more labs, more intensive diabetes management, more endo visits, more nurse visits, but you can bet your ass that I will on purpose also find a way to get more fun & laughter into my life. More feeling of big brother watching…which as a fiercely independent person I hate big time. For me the flags not only mean all the above but they mean that my 6 month visits to the lab & my health care team now are going to be every 3 months. Every single day of diabetes data is going into my A1C to be seen because A1c’s as you know cover off a 3 month period of time. That means for me that every stinking day I feel obsessed with the numbers going into my A1C because I am going to be seen every 3 months. Okay, to be an adult about it, I get it that this plan is for my own good. I am more than my logical self though. I am an emotional being with feelings as well. Yesterday afternoon after I had my endo. follow up I broke apart as in I got raw with feelings & cried it out with a safe person that gets me & gets what diabetes does to a person holistically. I let myself be vulnerable & real & yes I sure did swear about diabetes. Then I got to my fears & I cried my heart out. For sure I am strong but I am also human. For me I have to break apart at times like this & fully feel it all & then break through to the other side ready to fight with all my might & manage the hell out of diabetes again as a stronger warrior than ever before. I don’t bury my feelings & slowly implode in on myself. That is bullshit. Everyone has struggles, everyone. Some people choose to sweep it all under the carpet because it is a hell of a lot easier than facing our deepest fears. Will the fears go away just because they are denied? You bet they won’t. My heart’s hope for you is that you have at least one person in your life that you can open up to with full realness & raw pure truth & receive support.
The story continues. All of our stories continue. I got the wind knocked out of me. I swore, cried & gave voice to my feelings & today I woke up warrior girl again but possibly a gentler version of myself. I don’t have to fight this bloody disease alone. Okay, so I relinquished about 5% before, and now I am going to get more help so I will submit to sharing at least an additional 5% of the burden. In determination I will sift through the areas of my life that there are hills that I am dying on that I am banging my head against that I will simply need to let go. And I will also sift out the bs external behaviours of a handful of people & do more walking away from that with a simple, “that is not okay.” I have to fight diabetes & have to have enough energy for that day & night. That is the reality. The nonsense stuff is not going to take care of me if my health continues to deteriorate & I refuse to give power to bullshit. I choose instead better health & I plan on slowing down the progression of the flags on my labs. (slowing down the now decline of my kidneys) I have the best reason to do that in the world. On a more positive note, the one super unexpected bonus on my lab report is that my cholesterol numbers are perfect for the first time ever so my nutrition & exercise program are receiving an A plus from me. Life is precious. I plan to be the rascal heckling each of our sons after their post secondary graduations, dance with each of our sons at their weddings and in the meantime be the healthiest version of myself within any diagnosis every freaking day of my life. And I plan to laugh more…at myself at favourite comedic shows and more. I will be fully present for the stuff that matters. That is the story. My heart’s hope is that you write yourself a happy middle & end too.
In the spirit of releasing another 5% of the diabetes burden, I did something during my last endo visit that I have never done before. I asked my husband to take a half day vacation day from work & go with me to the endo visit. I could see that I was about to get some pretty bad news. Thankfully I knew I did not need to choose to face that alone. I decided to let someone who totally gets me & what life with diabetes is like carry part of the burden. It was difficult to do because I am stubborn & fiercely independent. I thank God for those rare people who get us, get that the struggle is heavy & they show their love in action. The thing that I have come to learn is that those that love us can sometimes feel quite helpless as they see us struggle so giving up some of the load to carry together is actually strengthening to relationships in that way. We are meant to help one another. As always be gentle with yourself. The next story sharing will be on Monday November 21st :)