Tuesday, November 17, 2015

Where are we now

Four and a half years ago, the Hell we call Diabetes entered our life.  Every day of the last 1667 days of my daughters life, we have pricked her finger, inserted needles into her body.  I hate it.  I hate that on days when normal kids have the stomach flu and get to sit home and lay down and sip on ginger ale.   That's not an option for Sarah...  She has to keep her blood sugar above 80.  When you're diabetic, you do not just get to lay there, I have to force juice, soda, anything into my daughter to bring her blood sugar up into a safe range.  If that doesn't work, or she develops large ketones, it's a trip to the Emergency room.  Not just any emergency room,  it's a trip all the way across the city..almost 60 miles one way, to the local children's hospital.

The biggest change in our life was when we got the pump 1 year after diagnosis.  Sarah no longer had to have 8-10 shots a day.  This made our life easier and we were able to change her basal rates (amount of insulin for the different times of day instead of having the long lasting insulin which we could not adjust by the hour.

At year 2 1/2 we purchased a Diabetic Alert Dog.  This dog is our lifesaver each day she alerts to Sarahs' high and low blood sugars.  More than once Candy (Hey, Sarah was 4 when we got her, and She is a Chocolate Lab..So it was only expected that Candy would be a great name) has saved Sarah's life.  Candy doesn't yet go to school with Sarah as she is only 6 and the other kids in the class would be greatly distracted by Candy.  We are hoping by 3rd grade, Candy will be able to go and help Sarah's school nurse and teacher to take care of her. Candy came from Tattle Tail Alert dog's in Salt Lake City Utah.  Candy's Breeder is a Type 1 Diabetic herself and has been one of the most awesome people I have met when it comes to dealing with Type 1 Diabetes.  The "Family" we have gained from online groups has seriously helped in dealing with this disease that is invisible to most of those around us. 

Just months ago, we finally were able to afford the Continuous Glucose Monitor aka Dexcom.  This is a beautiful, awesome tool,  however is very expensive.  and I hate it and love it.  It shows when Sarah's blood sugars are going up by a system of arrows... They either point up at an angle, two up mean she's climbing, two down mean she's going down fast.  one down is going down slowly.  It connects to an iPhone and then transmit to my phone, the school nurses phone, Sarah's fathers phone and a few others, in case of an emergency.  Sarah's school nurse unfortunately, has been awakened at 4 AM more than once for Low's.  However has always been awesome about it.  I love that her nurse is so involved with her care.

The stress of diabetes is very frustrating, unfortunately there are many side effects of Diabetes, that are not medical.  I personally gained 40lb's in the first 2 years after diabetes.  My own health suffered (High Blood Pressure, Anxiety and Stress Migraines)  as I have had to continue working full time and waking up 2-3 times per night to check Sarah's blood sugars.  The CGM has helped to cut down the amount of times I get up at night but it still is not 100% accurate.  My marriage has suffered, unfortunately at the time of this writing I am going through a divorce.  When you feel as though you are doing 99% of the work for a diabetic, hard feelings arise..
Diabetes changes the dynamics of all relationships.  There is no just up and leaving for a fun filled weekend.  Every trip outside of the house is full of anxiety for me because of the need for supplies, insulin, test strips etc.  Money...Oh boy.  Recently I added up everything for 1 year of Diabetes Supplies.  Without including the price I pay for Insurance,  our yearly out of pocket in Co-pays, Deductibles, Blood work, prescriptions, Diabetic Alert Dog insurance, Diabetic Alert dog food/treats etc literally are around $8000 a year.  That's the purchase of a small car each year almost!

Alas,  Sarah is now 6, attending the first grade at an awesome school that has a full time nurse on staff (I cannot imagine Sarah going to a public school locally that does not have a nurse but one day every other week, Leaving her without a nurse is dangerous!) She is happy, healthy, funny, gregarious and so very smart.  Unfortunately, we recently had a bad test result and regarding her kidneys and we are awaiting further testing to know if the high blood sugars are affecting her Kidneys at such a young age.  She knows when things are rough and we just cannot afford to buy new toys, clothes or other things.  Her big brother and sister sadly are jaded by this disease, they feel anger towards us as the parents that cannot afford what they used to get before this disease entered our lives 4 1/2 years ago)  They are almost adults, They have had to give up some of their free time so I could pick up more hours at work, or to do more chores as their Dad and I were just too worn out from having only 24 hours in a day to get all the things done that are needed to be done. 

On every shooting star,  Every Dandelion that is blown on, Every lost eyelash, Every birthday candle that is blown out... I wish for a cure.  Every day of my daughters short life since diagnosis I have prayed for God to help those scientists and researchers to find a cure.

Sunday, October 11, 2015


As I sit here on a Sunday morning I think about the last 20 years of my life.  Two marriages, Two Divorces (one not quite done)  One beautiful little girl who I love more than the world itself.  Two step kids that I adopted and love just as much as my princess, however don't share the same amount of love.

I'm living with my twin sister and her husband and family right now. I'm a foster parent to a 7 year old boy who needs love, time, and taught how a family really works.

I went to college and graduated, yes I was on the 6 year plan. However working full time and being a wife was hard work, so I am still proud of what I accomplished. (Although 40k in student loans, 12 years later still sucks.)

I have a career I love.  I get to help people, I get to be out in nature, I get to be autonomous and make my own schedule.

I cannot however express the amount of stress and pain I've been in over the last year.

I am currently going through a divorce and as everyone knows...it's not any fun, it's stressful and seriously makes me wish life would just chill it's shit for a bit because I cannot handle this anymore.

Sarah spends 50% of her time at her fathers house and 50% of her time with me. I miss her every single second that she is gone. I hate being away from her as I am very over protective of her blood sugar.

We recently found out that one of Sarah's blood tests/urine tests at her annual lab's shows that she's spilling protein into her urine.  Unfortunately, that's bad...really bad.  However except for making sure her blood sugar is in range (and I try to do this as much as possible) and watching her animal protein intake, right now there's not much we can do. It scares the hell out of me.
My daughter was 2 when she was diagnosed, She's 6 now. She's dealt with this disease for 4 1/2 years.  I am frustrated, because this disease can literally kill her fast (with a low blood sugar) or very slowly and painfully by shutting down organs, making her lose her site etc. It makes me want to cry. I don't like it I hate it.  and frankly this disease freaking sucks.

And on that note... We went to the Womens Expo today...
They had a belt type thing that fit's Sarahs' CGM, Insulin Pump, Continous Glucose monitor. All in one!!  It was $20, and a little bit big for her. But she likes it. it's comfy, it can go under or over her clothing.  :) Supposedly they also do a pump belt specifically for JDRF.  !!!  <3 it="" p="">

Wednesday, February 11, 2015

Time Keeps moving on

Over the last few weeks and months have changed....a lot of things have changed.

Back in October I lost my grandfather.  He was 90 years old...  I missed seeing him and saying goodbye by hours.  I miss him so much and my heart still hurts for missing him.  He was my rock.  The entire family's rock and now that he is gone.  I am struggling to continue on.

My sister and I are no longer speaking and I miss her so much. But at the same time. I am just done being the one to keep trying.  My life has been much quieter lately...and that's ok.  But I miss my niece and nephew.  I miss sitting and chatting and cudding with them.  I hate it.
But at the same time I have my life to myself.  My husband and I are trying out marriage counseling.  I want to succeed in life. I do not want to fight anymore.  I pray and hope and one day hopefully we will be able to get a long.
Sarah asked me today..Mommy who do I have to live with if you and daddy do not stay together.   I didn't realize she was that scared of us splitting up. I did let her know that no matter what...She would be with Daddy and Mommy.  And as of right now we will be together.  We will keep evaluating what we want and what is best for Sarah.

Since Ashley is 17 and will likely be moving out after she graduates next year.  Jeffery is 18 and already moved out...  I am not really worried about them right now.  Dennis and I splitting up is going to affect Sarah most of all.  And it scares me.  Her health is the most important thing in the world.

We are just trying to continue life...