Bring on 2018: A New Year Brings More Miles Ahead!

 

 

Looking back to a year ago, my mind begins to spin like the spokes of my bike! So many changes, with so many hills and valleys (pun intended here). When I look back at my goals set for 2017, I would say that I have… for the most part, accomplished what I set out to do this year, despite a few bumps in the road. There is still so much more to work toward. One day at a time.

We have mastered so much as a FAMILY. Both Lilly and Grayson are growing leaps and bounds.

Lilly has always astonished me with her inquisitiveness, sense of humor and sometimes overly sensitive qualities. I realize that for her, these are important survival skills. While I can be quietly struggling to maintain blood glucose equilibrium, I understand that she too can and will feel the repercussions as my mood, my brain and my body become so disconnected. And I will do whatever it is to keep her and her brother safe and somewhat sheltered from it. I know when she is older she will understand more clearly, but for now, she knows as much as she needs to know.  Her growing curiosity about how our bodies work and her love of anything and everything science related lets me know that she has a great wonder and appreciation for the world around her.  I am so proud of the little person she is becoming.

Grayson, what can I say…this year has been nothing but growth. He has recently started a new preschool 5 days per week and I’m already beginning to see a difference in his language and ability to express himself more clearly, having actual back and forth conversations with Lilly.  I’ve noticed an improvement in recognizing others emotions and an ability to express his own in more effective ways (you know other than throwing tantrums).  It has taken a year but on his own terms (which is key) he has mastered the potty, telling me when he needs to go. We will continue to work on morning and bedtime routines, reading and working on getting himself dressed, but WOW, I think now perhaps I’m feeling a bit, well “unneeded”, but believe me…thats OK! I’m always of course needed, just perhaps not as much in the physical sense.

I am so very blessed.

Blessed to be surrounded by friends, family and an amazing husband who have supported me this year through some difficult times including two (small and non-invasive but none-the-less), surgeries, a face plant that led me to seek surgery (as I have written extensively about in a previous post) and day to day life with T1D.

I am also most thankful to have made some amazing friends from all over the country having participated in my very first (and not last) JDRF Ride.  I never thought that 62 miles (100km) would have been possible, until I had the privilege of meeting some amazing people and Coaches, there for all the same reasons and touched in one way or another by Type One.

Not only was the experience one I will never forget, but fundraising was such a feeling of accomplishment. I felt like I was actually doing something to work towards a much needed cure. This year I will make a commitment to do more. I know it’s possible with the support of my family there by my side and a very special new ride partner to train with! It will be AMAZING! I thank all my family, friends, businesses, restaurants and individuals for their generous donations and for all of their support.

Here is to another year of health, happiness, personal growth and achievements!  May we learn from the past, to grow and ensure a better future for our children! I know my children will continue to keep me on task! They always do!

 

 

 

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A Secondary DX: Because Diabetes isn’t challenging enough!

This year has been especially trying. Not only on a physical level but emotionally. I haven’t really talked about a secondary dx I was given about 8 months ago.  I’ve buried myself in the day to day work of a stay at home mother and been have been keeping myself continuously active and busy with well LIFE with two children.

About 1 year ago I suffered from a fall. I had gotten up in the night to use the bathroom and had severe right sided pain. It was most likely due to an ovarian cyst that burst. Instead of staying seated until the dizziness subsided I proceeded to wash my hands and rush back to bed…however I never made it back to bed and collided with my bed post as I blacked out. The next thing I could remember was Justin hovering over me, smacking my face and appearing in horror at the 4 inch gash on my head that was bleeding profusely. He ran to get a compress and called 911. Of course he decided to look at my Dexcom, sitting next to my bedside. My glucose level was 60 and dropping steadily.  He fetched me a juice box and quickly I was off in a stretcher to Saint Mary’s where the ER surgeon did a pretty amazing  job stitching my head back together.

Even before the fall I knew something wasn’t right with my body. I had been chronically anemic, suffering heavy bleeding during menses. I was referred immediately following this incident to a reproductive endocrinologist where a 2.5 cm cyst on my ovary was discovered as well as uterine polyps which needed removal. Upon laparoscopic surgery it was discovered that I indeed had endometriosis. April my right ovary was removed as well as the ovarian cyst.

Endometriosis? At my age and after having 2 children? Isn’t that a disease that only effects women struggling with infertility? As I was educated further…not at all. Many women can have the disease and never be diagnosed, and currently the only way to diagnose is by laparoscopy, a $5,000 procedure that isn’t always covered by insurance.  So another 6 months have gone by and I’ve wanted to believe that things were improving.

I had yet another follow-up with the reproductive endocrinologist about 2 weeks ago, indeed uterine polyps still continue to form. In the back of  my head  there is that thought “could this be cancer?”  I was relieved to find out that uterine polyps rarely develop into cancer, especially at my age,  however it was again recommended to undergo another surgical procedure and D and C to have them removed and biopsied “just in case”. So my mind is still not yet at ease…but I think positively.

So again I ask the question. Why? How is this still happening and what do I do to stop them? I must confess that these issues do not at all help diabetes management. Already as a woman with diabetes I have pretty extreme fluctuations in glucose levels with  my menstrual cycle and my sensitivity to insulin varies throughout. Currently the most common treatment for endometriosis is with hormones. I have tried birth control pills continuously to stop my periods to no avail. Not only did I suffer more frequent migraine headache attacks but bleeding never ceased.

My last procedure included endometrial ablation to destroy the endometrium and keep it from coming back as well as an IUD placement in order to thin the uterine lining.  If this doesn’t appear to work, or if the biopsy were to come back with pre-cancerous cells, I see a possible hysterectomy in my future. My fingers are crossed!

Through all of this I am very confident in the hands of my surgeon and hope no matter what, this will all be behind me soon.  If not with the Mirena IUD, well then menopause…which is still a ways off.  Yikes!

And I keep smiling…exhaustion and all. I’m so thankful. My uterus most definitely did it’s job!

Dear Diabetes

You have been part of my life since that fateful day 5 years ago, and possibly for months before I accepted you were there in the early stages of my journey into motherhood.

You have caused a lot of highs, and many lows, some which I wondered if I would come back from.

You are extremely high maintenance and cost a significant amount of money to acquire the medicine and tools necessary to properly dose insulin in a manner that, well still doesn’t even come close to what a functional pancreas does.

You mess with my mind…probably because of the highs and lows… but maybe also because you are a never ending nagging piece of my life I wish I could just ignore.

But I have to live with you.

I have to ACCEPT that without frequent finger sticks, insulin dose calculations and daily mindfulness of my mental/physical state, well I wouldn’t walk this earth or be able to enjoy the things I OH SO LOVE.

My kids.  My family and friends.  Those that are always there for me when I need them most.

I most dislike you diabetes when you take me away from them.

When you worry them.  Because thats what hurts the most. The psycho-social impact of you.

Not the the constant needles.

Not the finger pricks.

Not inserting a sensor into my body every 7 days and placing an insulin pump every 3.

No that part doesn’t hurt at all.

I’m very hopeful to be rid of you one day.  When that day comes I will fall to my knees, cry, and hug my children close. Because right now I know they are not safe from all of this. Type One Diabetes has no prevention or cure.

But you have given me a fighting attitude for survival.

On World Diabetes Day tomorrow,  I’ll show my gratitude. I am extremely lucky to have access to insulin, an insulin pump and a CGM. I am extremely grateful for all the medical researchers out there working on better treatments, therapies and ultimately one day a cure.

So Diabetes. You remain. But I am hopeful that life with you will be much different in the not so distant future.  Or maybe I should re-state that….life without you.

Sincerely,

The body you inhabited 5 years ago.

 

 

Ready to Ride Out a New School Year!

There is a first time for everything, right?

First day of second grade came quickly and summer vacation was over just like that!  Lilly was more than ready to go back to school and make new friends and greet her new teacher.  Her birthday came and went and we celebrated 7 years old on roller-skates, figuratively and literally! Wow! 7 years ago I celebrated having my first baby! Seems surreal!

Today was Grayson’s first day of Pre-school and while he doesn’t quite yet grasp the idea of Mommy leaving him for 5 1/2  hours every week, I know it is a necessary experience for him to continue to grow socially and emotionally.  Plus mommy would really like to enjoy a few hours a week solo to you know…go to the grocery store ALONE.

It is just about the 4 anniversary of this blog page, and while I’m not fantastic at updating it these days, I now recognize the ways in which writing helped me to overcome my fears and feelings of loneliness while managing Type One diabetes in pregnancy.  I’ve been able to connect with so many other T1D mothers to no longer feel alone in my day to day struggles.  I was in my early weeks of pregnancy with Grayson, Lilly was just starting Pre-school at St James where Grayson is now attending.  Isn’t it funny how life comes full circle?

And the journey continues. Each day brings about new challenges. New obstacles to overcome.  To think how far I’ve come since dx will bring me to tears…

And the fight continues…5 years and 5 months in.

I am feeling prepared for my first Ride to Cure next Saturday in Saratoga Springs. I set out to ride 32 miles, a distance I know will be challenging and yet done in a reasonable amount of time, well because I’m SLOW.  But this ride has never been about speed or how fast I’ll get there or the miles I will track. I’m showing up and I’ve raised so far $2600 with the support of my amazing community of friends, neighbors and family! Thank you all so much!!!!

I am excited to be meeting others impacted by Type One, those living and thriving with Type One and their families and also to honor those sadly that have been lost to this disease.  I am grateful to live in a day where pumps, CGM technology and newer insulin treatments exists.

It exists because of research dollars and that’s why we need more help and funding! If you would still like to make a donation but haven’t yet to my JDRF ride you still can do so!!!!! Just ask me how 🙂

Here’s to another great year of new experiences, the ups and downs, the highs and lows that will come and go.  I pray for strength and courage, one day at a time.

 

 

 

I’m Never Alone

One of the scariest things I realized shortly after being sent home from the hospital after my dx with T1D… I was responsible for a then 19 month old (Lilly), 10 hours per day, ALONE. At that point in time I was extremely sensitive to the effects of insulin weighing a whopping 90 lbs.  I certainly could feel the symptoms of my glucose levels plummeting….the clammy skin, cold sweat, racing heart, shaking hands and white knuckles. Yes…I was terrified to take the very medicine I knew was keeping me alive.  I felt alone, and other than my health care provider and hunting for the right endocrinologist to share hand written blood glucose logs with, I didn’t know who to talk to. I had heard about and was intrigued by the Dexcom CGM (continuous glucose monitor), but the thought of this on my body 24/hours a day seemed intrusive and a bit overwhelming.

Still, by the time Lilly reached 3 1/2,  she would know what to do in case mommy was unresponsive and we did teach her how to dial 911.  This was heartbreaking for me but I knew that it had to be done both for my safety and hers.

With the encouragement and support from my husband to plan a pregnancy (yes Grayson was then in the (very) back of my mind) and the desire for extremely tight control of my blood glucose, I decided to get the CGM (Dexcom)….and I will never look back as it has saved my life on numerous occasions, and along with my pump, made pregnancy with T1D a whole lot more manageable.

My current A1C : 5.7.  While I now realize perfection with diabetes does not exist, this number along with data collected from my Dexcom represents the fact that I am within the normal range (70-180) 70% of the time.  Do highs occur? Of course! Lows? Sure do! But the difference today is that I am no longer afraid…afraid to take my life support, insulin. I’m stronger on so many levels and have been blessed to have found my soul mate, friend and partner who has lifted me up when I was in the lowest of lows and given me the encouragement and support to stand up again (that’s you Justin). I know it’s a role you never realized you were signing on for, but in sickness and in health right? No one gets to see the real impact of diabetes…the mood swings, changes in personality, fists being thrown while nearly unconscious, the middle of night alarms beeping and early am squealing pump wake-up calls) quite like you do. I love you.

I’m never alone in this fight. All of the friends, family and individuals out there who have contributed so far to my JDRF ride thank you from the bottom of my heart!  I know a cure is possible and the future is bright.

 

 

 

 

 

 

To be a Mother (with Type One Diabetes)

 

August 27th 2010.  The day I became a mother and the happiest of moments in my life. Lillian Marie arrived and it was love at first sight.

No one can ever prepare you for motherhood and the responsibilities of keeping a newborn alive.  To me probably my most instinctual and natural way to bond with her…breastfeeding.  I mean I was at the time a CLC and read every book, taken classes, attended workshops on it so… of course it just came “naturally” right???

Well not exactly.  Just like every new mother I had my own fears and doubts in the beginning.  “does this latch look right?” “is she getting enough”, “why is she eating again, she must be getting too much fore milk”.

And so began the journey of unconditional love and setting aside your own needs for someone else.  Breastfeeding became survival…an instant primal connection with her because it was what I could give her that no one else could.  She was fussy…breastfeeding would calm her immediately.  In so many ways,  hormonally it did much more for me than just provide the best nutrition. Oxytocin, a powerful “love” hormone is released when nursing, and I truly believe it’s what kept me sane during that first year,  when your world turns upside down and you are filled with every emotion imaginable. It was a labor of love…

Nursing her is what made me forget about the days leading up to delivery…  I had been diagnosed a gestational diabetic with pretty erratic blood glucose levels leading up to the delivery and post-partum.  While looking back now I can see the signs of diabetes looming around the corner… I could not admit that something didn’t quite feel right during those days. The fatigue…exhaustion…thirst, I mean aren’t you thirsty when you are nursing a baby?

I’ll never forget the thoughts that went through my head after diagnosis with Type One… I repeatedly in tears just kept saying to the physician treating me after my hospitalization with DKA,  “I thought it would go away…I wanted it to GO AWAY”.  The doctor looked into my eyes and hit the nail on the head,  “You just wanted to enjoy your little girl”.

and yes…that was it. I wanted to enjoy my baby without fear of an incurable disease weighing constantly on my mind.  I wanted a life free of injections, finger sticks, measuring my food, and wearing devices that keep me alive.  I faced a harsh reality, and came to the realization that without the inventions of modern medicine, I would not have become a mother in the first place.

For me…motherhood and diabetes are intertwined.  I must always keep my health at the forefront of my life. While at the time of diagnosis I was devasted, I have learned how to cope in healthy manners and move forward with gratitude.  Diabetes has made me a much stronger mother and person. My children are my reason to keep fighting this unforgiving, relentless disease.  Every poke, every insulin pump site change, every number on the glucose meter and Dexcom graph… I’m thinking of them.  Because they deserve a healthy mother who is around a long time.  So to all the strong mothers out there fighting, whatever your struggles may be…

Happy Mother’s Day!

 

 

 

 

 

Reflecting on 5 years of Diabetes

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That’s half a decade ago since my diagnosis. Time flies. How could it be that I’ve endured nearly 8,000 finger pricks, an estimated 1,000 insulin injections and countless pump and CGM site changes. I most likely no longer even have finger prints on my left hand as my fingers have become so bruised and callused from poking a minimum of 6x a day.

I didn’t cope with my diagnosis very well, and I’ll admit that even today I get tired of it’s nagging when everything else in life becomes all consuming. I’m tired of fighting an illness that doesn’t take a day off. Diabetes doesn’t sleep. Diabetes doesn’t take a vacation. Diabetes doesn’t care if you do everything you are supposed to do…count carbs, measure and weigh food, inject or bolus accordingly, prick finger, take correction bolus, retest in 2 hours, exercise daily, meditate, breathe…

Because everything you do impacts it and it impacts everything you do.  Every single drop of blood I test, I have a decision to make…give insulin, decrease insulin, eat some carbs, drink more water… but am I hungry? am I going to exercise? Is my sugar high enough to make it through the night or make it through this workout without dropping dangerously low?

I have come a long way in 5 years.  From nearly passing out at the sight of a drop of blood, to vigilantly managing my diabetes during pregnancy and going on to deliver 2 healthy, beautiful children that God has blessed me with. They are my reason to keep fighting. They give me the strength to push forward, even on the hardest of days.

As healthy as I seem on the outside and as well managed as I have been, there is always the fear of life threatening hypoglycemia or  hyperglycemia than can arise at any given moment and lead to long and short term complications.  It takes vigilance and it takes the support system of my amazing husband and loving family. I can’t thank them enough for all their support. Even when I know they too have a despise for this disease…and probably they despise diabetes much more so than I do…

The future of diabetes management and a cure holds so much promise and hope. Not just for me but for my children and the millions of other diabetics like me waiting…

#weneedacure.

…and while I’m waiting for a cure, I’ll keep reminding myself of all the positive things diabetes has given me…friendships that I would never have made if I had never been diagnosed, the lesson that life is fragile and to never take one day, or one moment for granted.  Never give up hope. So I’ll celebrate the day my life was saved 5 years ago on April 20, 2012!