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!

 

Change is inevitable and the Future is Bright!

How is it that G is approaching 3 years old and Lilly will be turning 7? It feels like yesterday I carried them in my belly. It’s hard to imagine this Fall G will be off to Pre-school two days per week. What will I be doing with all of my free time?

I have been so incredibly blessed to have the family I’ve always wanted.  I have learned acceptance, gratitude and ones perseverance will take you far.  If you can dream it and believe it and continue to smile even when you have had the worst of days, positive things will come your way.

I haven’t blogged recently re: non diabetes related health issues, but a little background. December I suffered a fall and laceration to my head. It happened in the middle of the night, a severe stabbing pain on my right side which caused dizziness. Instead of sitting down as I should have done I wanted so desperately to go back to bed. I blacked out on the way hitting my head straight into the bed post. Justin found me lying face down, unconscious. We luckily were able to call an ambulance without disturbing the children peacefully asleep and I was taken to the ER where I received 10 stitches.

The pain on the right side dissipated quickly, and since I have had these episodes periodically in the past, the MD said this kind of pelvic pain is most likely attributed to ovulation. I saw my OB next day and no abnormal cyst was found as it had most likely burst when I felt the stabbing pain. The solution for the immediate time being: birth control pill in order to cease ovulation.

Long story short…I have also been suffering from anemia. Again, not diabetes related but the OB found a uterine polyp which has led to heavy menstrual bleeding. Is it normal for a woman to bleed 3 out of 4 weeks a cycle even after initiating birth control?????

So April 11th I am more than relieved to be taking care of these two things and having a tubal. My right ovary which is suspected to have scar tissue on it causing pain, my right fallopian tube and also the uterine polyp will be removed by laparoscopy.  I will also be more than relieved to discontinue the birth control as in my case: synthetic estrogen and insulin treatment is not ideal.

So all of these things going on, while managing a chronic illness and staying ever present to my family has been a struggle, however I am very relieved that my answers to all of these non-D issues can be solved.

I am looking forward to the next chapter in my life. Raising two beautiful happy, healthy children (and yes, just 2!), raising D-awareness by doing my ride to cure and continuing to stay positive. My family is complete. I knew the day I found out I was pregnant with G,  that it would be both my first and last pregnancy with diabetes.  I climbed that mountain. I did it. What’s next? I don’t know, but the future is full of bright days.

Why I will Ride.

So for those of you that don’t already know…

I signed up for my very first JDRF ride to cure in Saratoga Springs this fall. I’m pretty excited about it…for a person that hasn’t gotten on a bike since the age of 12! Saratoga Springs is 20 minutes away from my home town and college alma mater! This will not only feel like a homecoming for me but an experience of a lifetime and opportunity to meet and rally with others that have been impacted by this cumbersome and ever so challenging disease.

My fundraising goal: $3,500 and soon I will train to bike 32 miles.  I feel very capable and confident about the challenge on a physical level. The experience of learning how to fundraise in creative ways will prove to be probably the most intense part! I know that I will not be able to do this ride without the support of my family and my community of neighbors, friends, the DOC as well as fellow bloggers!

So my Why.  Research dollars = healthier and safer lives for those of us living with Type 1.  Management has already come a long ways…but insulin is not a cure.

I am faced with my own mortality in ways most never experience. My life depends on insulin, a drug that if not taken appropriately could potentially take my life.

I will never forget the humbling experience, sitting in a hospital bed with a team of MDs surrounding me, discussing my blood gasses and chemistry results. My body was in DKA, a dangerous life threatening complication of Type 1, when blood becomes acidic due to the break down of fats and proteins for energy needs as glucose is unavailable with lack of insulin.  I was at risk of a coma and needed medical supervision for the next 2 days while I tried understanding how my body would respond to insulin.

During these 2 days, the only thing on my mind was my daughter, Lillian just 19 months old and this was the longest separation I had ever had with her. I couldn’t wait to get home to her, but from that point on, realized life as I had known it had completely changed. All I could think of was how this would impact her. Would I be able to safely care for her? What if I went low? What if I was high and went back into DKA and needed another visit to the ED? What if I suffered complications down the road?  And the worst question…the only thing I could think about for a little over a year…if this is genetic…what if she developed Type 1 diabetes? What if I also became responsible for a toddler that needed constant care and injections and fingersticks, pump changes and making decisions about insulin doses that could potentially be life threatening. The thought was too much for me…I was living in terror…a constant fear of the unknown.

That fear even though today still exists has no longer paralyzed me or kept me awake at night. Nearly five years of diabetes has made me in many ways a fighter.  I will ride because I have HOPE that things will improve and every research dollar I can help raise makes me feel like I’m doing something to ensure my children a better future where Type One will no longer exist.

To making TypeNone happen and raising awareness and research dollars to find a cure.

This is the reason I will ride!

Below find a link to my fundraising page and please consider making a donation to a cause near and dear to my heart.

And for those of you that already have, so many thanks!

http://www2.jdrf.org/site/TR?fr_id=6889&pg=personal&px=11303849

 

 

 

 

 

Silver Linings

I’ve been a mother now oh, over 7 years if one counts the nine months carrying Lilly in my womb! I still feel like a new mom on most days because well I have no idea what I’m doing! I can, with confidence say that my children are extremely persistent and independent little people with a growing curiosity about the world around them. The questions of a 6 year old make me both laugh and cry (from laughing so hard that is) like, “Can boys have earrings too mom?” or “Mom when are you having another baby?  I want a sister.” And my personal favorite, “How do babies get in a Mommy’s belly?”  Yeah.. we have successfully avoided that conversation for now.

I have two amazing little teachers really! There is nothing like experience to teach you new tricks! In many ways I have related this to my life with diabetes. I don’t have the answers all the time. I mean, sometimes I just know why my sugar is high or low…perhaps too much bolus, not enough food, too much exercise, not enough sleep, miscounted carbohydrate intake, stress, hormonal fluctuations…the list goes on of all the possibilities. You roll with it…make a best guess while attempting to carefully attempt a correction using a some math….Example: Fasting BG 170… 1 unit brings me down 50 points, coffee with cream will raise me 50 points…so take 2 units with coffee and hope that it works like it did yesterday…

Only if  you’re diabetic can you understand the insanity of some days! You see I can do the same thing day in and day out with wildly different results! When I was first diagnosed I found  myself constantly blaming myself for every value out of range. I doubted my own ability to carry another child safely, even though I had done it once before taking insulin as a gestational diabetic.

And then I saw a CDE who not only had been living with diabetes over 40 years, but she had 2 healthy children while living with diabetes during the 1980s (her daughters were my age!) She gave me the best advice as she combed through my blood glucose values prior to trying to conceive with Grayson, “Diabetes is an art, not a science.”

And even though I was scared as hell to jump into a diabetic pregnancy, even with my A1C and blood sugar goals where they needed to be…I took a leap of faith.

I had to believe in myself. And that my friends is the silver lining.

You are stronger than you think you are.

Your obstacles will give you strength and courage to keep moving forward.

And this is what I will continue to teach my children. Not from a book.

From experiencing this beautiful thing called life.

 

 

 

Hello 2017!

I’ve had every intention to write a post saying good-bye 2016, reflect on the good, bad and ugly…

But I’ll simply stick to the present and future while thanking my lucky stars for the blessings I’ve been given in this life…

What a wonderful holiday it was spending quality time with family.  We rang in the New Year with the most lovely group of neighbors anyone could ask for! I went home before midnight with Grayson and fell asleep of course before the ball dropped and was perfectly content with doing so! There is no greater gift than a good nights sleep!

So what’s in store for 2017?  There is so much to look forward to!  Each new day, watching and experiencing my children grow and learn is a true gift. They keep me on my toes,  and while at times I feel the exhaustion of motherhood taking it’s toll on my mind and body, I realize I must take the very best care of myself to give them everything they need…

So this year I’ll make a few resolutions, both mind, body and environmentally focused:

  1. Meditate or write (blogging) 15-20 min/daily.
  2. Keep up with all MD appointments and continue to keep A1C < 6.5.
  3. Continue to attend Zumba/HIIT classes and lifting weights 3-4x/weekly.
  4. Begin a spinning class 2-3x week in order to prepare for JDRF ride to cure/Saratoga Springs for Fall 2017! Oh and of course get my bike as well as the kids bicycles ready for outdoor biking family fun this spring!
  5. Spend more family time with focus on community service and giving to charitable organizations i.e. fundraising activities, and appreciation for the environment (This will also involve planning an Earth Day centered event, celebrating 5 years of life with Diabetes)

I will of course not be able to achieve these goals without the continued support of my loving family, wonderful husband, and community of supportive neighbors and friends! Thank you everyone for your love and generosity. It means the world to me! May 2017 be a great one!

 

Before and After Diabetes

I’ve been thinking a lot about this lately. Myself before…

Before blindsided by chronic illness.

No insulin injections

Freedom to eat how I pleased (I made an effort to eat a balanced diet, but was not as carbohydrate restrictive as I am now)

Freedom to exercise when I’d like to and however I’d like to

No finger sticks

No life threatening hypoglycemic episodes

No wearing monitors

No insulin pump and tubing infusion set hooked on my body

In many ways it’s almost impossible to envision “BEFORE” as diabetes came into my life during  a significant life change: Becoming a new mother.  I try not to look back…there is no turning back time. There was nothing I could have done to prevent it.

But sometimes I wonder how my life would be different without diabetes. I wonder what it would feel like to wake up without testing my blood. Without CGM alarms going off in the middle of the night.  Without the need to calculate an insulin dose for every bite of food I eat.  Without having to adjust basal rates and planning every move of my day to account for exercise, illness, stress and so on…

No more constant worry that one day I may end up with “complications” because try as hard as I may, highs and lows still happen.  No more frustrations with a failing insulin pump or ER visits for emergency IV hydration. No worry when my daughter wakes lethargic and asks for her third glass of water…

My AFTER perhaps will look like this?! I can hold onto HOPE.

BUT MY PRESENT = ONE STRONG MOTHER

Yes. Maybe I don’t give myself the credit I deserve always for managing the present.  Because that’s all there is my friends. PRESENT. No looking back.  And HOPE for a better future for my children.  Diabetes Awareness Month is around the corner and advocacy is our friend.

Because I still get “you look so healthy” So why would I need a cure so badly?

Because my future health depends on it…no matter how hard I work to manage, I still need insulin to survive and it’s not a cure, but life support.

I’m grateful for my LIFE today…I won’t look back…only forward to better things.

To strength, endurance, and HOPE.

 

 

 

 

 

 

An Exercise in Endurance

It’s only been 4 1/2 years.  Within 4 1/2 years I have been through countless injections and fingersticks, blood draws, infusion and CGM site changes. I have been on 2 different types of insulin pumps and 4 different insulins.  Each change in therapy method came with the hopes of ultimately achieving tighter blood glucose control.  And over the past four years, I have slowly come to accept that no matter what method or tools I choose to use, all of these efforts would never measure up to that of a functional pancreas. This was an extremely difficult thought at the time because at first my hopes of having another child felt shattered.  I felt defeated and betrayed by my own body.

I mean why did my body turn on itself? Was it my fault, my diet? Was I toxic from exposure to environmental contaminants ?  Was I not eating enough Kale? And yes, for some time I had turned to a Vegan, GF, Dairy free “cleanse” so to speak.  I wanted answers and I wanted to know why this happened. I would do and try just about anything to live a life free from the constant threat of complications.

After some scary low blood sugar episodes…I didn’t want to take the very medicine I knew I needed to stay alive out of fear. At one point in my darkest of days I recall being in my Doctors office scared, sweaty and nauseous from a rebound high blood sugar…I was demanding beta cells.

And that’s when I realized I had a choice. I could either loathe diabetes and resent my own body and live in fear or choose to go about my life the way I had always intended to, take the proper precautions, correct a high blood sugar… treat a low and move on. Endure it and do the very best job I could with the tools I’d been given.

Pregnancy with diabetes was a test of this endurance. I turned to exercise in my arsenal of diabetes management “tools”. I preferred aerobic, so the treadmill and I became very good friends throughout. Strength and weightlifting exercises wasn’t my strong suit (in the back of my mind I knew this would be something I needed to work on, however at the time I was scared to try anything “new”) I stuck to the cardio, at  first jogging 3-4 miles, 4-5 days weekly and as the pregnancy progressed I walked hills.

While exercise is good for lowering blood glucose levels in general…I found as the pregnancy progressed my mornings became less stable with post breakfast spikes. My insulin needs were increasing, and so was my need for adequate rest. I learned to listen to my body during this time and this was probably most important of all.

The release in endorphins that exercise brings about for me is quite powerful.  You see, it helped me to realize my bodies full potential, despite my obstacles with diabetes. If I could make it through a work out without collapsing…well I could do pretty much anything if I put my mind to it.

But I’d be lying if I didn’t mention the tough days. The days where I just don’t think I can stomach another blood test or injection.  The days that despite working really hard I still see a reading of 300.  The exhaustion that comes from a low blood sugar. Sometimes there  are visible bruises and bleeding or infections at injection or pump sites. There is always a fear that diabetes could complicate my future, and the possibility that my children could also have the disease one day.  It can be quite paralyzing at times.

While on vacation recently I got a chance to sit and do quiet reading. Quiet time? Imagine that! Of course I chose to read the inspirational non-fiction book “Not Dead Yet.”  It is about the life of the youngest diagnosed case of Type 1 diabetes, Phil Sutherland. At just 7 months his parents were told that blindness, kidney failure and death was predicted by age 25.  At age 29 he was the founder of Team Type 1, a champion bike racer, winning the Race Across America (a 3,000 mile endurance competition twice).

In an open letter to his parents he writes 28 years later… “Diabetes is something I now consider to be a gift, and it is perhaps the greatest one you ever gave me (aside from my first bike). We don’t choose diabetes, rather diabetes chooses those who can handle it. ”

While I don’t consider diabetes  a “gift” it has certainly made me realize the value of my health, to never take it for granted and to work hard for it and endure. It has connected me to others that have inspired me to help raise money for a cure and participate in walks and research studies. And I really do believe that the day will come, when my daughter asks me “Will I have diabetes one day, Mommy?”  I will be able to say, without swallowing a massive lump in my throat, “NO. You won’t.”