Wednesday, November 30, 2011

Day 30 - Life Without Diabetes


Day 30 - Life Without Diabetes

I am having a low blood sugar as I write this.  About 15 minutes ago I was 46.  Please forgive me if it is jumbled, but this is how it goes.

I was diagnosed in college.  I had quite a bit of life without type 1 diabetes.  The thing is though, the memory of the day to day, of carefree, careless actions is fuzzy to me.  I never had to go to a birthday party and skip the cake because my blood sugar was too high.  I never had to skip sleepovers, or dance recitals or anything.  Being an adult with type 1 diabetes is a completely different dynamic than being a child with type 1 diabetes.  I had a perfect childhood.  Now, let me tell you about my adulthood.

In college, I told every professor I had diabetes.  I was terrified of going low in class and not knowing where I was.  I told my employer, my friends, my dance teacher.  Diabetes did inhibit me, but it didn't control me.

Fast forward to post graduation - I found a job in the diabetes field.  It became all consuming.  My whole work day revolves around it.  Before it was just my personal life.  Now it is my career.  Sometimes it is a little much.  Sometimes I am grateful to have my niche.  Other times, I am just so damn sick of it.

Now that I am getting older and planning a family, I will say I am now consumed 24/7 by diabetes.  It is hard for me to even remember the days of college when it was just something I had.  Now, I almost feel like it is what I am...

My Dr.'s offices define me as a T1D.  My patient records categorize me as high risk.  To them it is what I am.  Today I make the distinction.  It may be what I am, but not who I am.  I am much more than that.

Life without diabetes would be just that.  I am Nikki, I am not a person with diabetes, or a diabetic.  Or the one that works at JDRF who has T1D.  Or the facebooker who can talk of nothing else.

I am just me.  A reader, writer, dancer, sarcastic, loving, know-it-all person.  Someone who one day had a disease that made them stronger.

Me.  

Tuesday, November 29, 2011

Day 29 - What does a cure look like?

Day 29 - What does a cure look like?

This is hard for me to write because it looks like so much to me.  I have tried to stay positive over the years and continue to believe that some day there will be a cure.  When there is, this is what it looks like to me...

A long life with my spouse.

Seeing my family age.

No complications.

A baby.

Grandchildren.

A new job.

No finger sticks.

Life.

Monday, November 28, 2011

Day 28 - Financial Burden of Diabetes

Day 28 - Financial Burdens of Diabetes.  Do you have a story you would like to share about insurance coverage and the financial burden of diabetes?

Having type 1 diabetes is expensive.  It is a constant.  Fortunately, I have great insurance.  Now.  This was not always the case.

While in college, I was covered by my parent's health insurance.  When I was diagnosed I was so fortunate to have insurance.  I now had a pre-existing condition, I couldn't even imagine what it would have been like to have a pre-existing condition and not have medical insurance.  It would have been chaotic.

I am not always sure people understand the ramifications of having a pre-existing condition and quality insurance.  A college acquaintance once said, "You wouldn't insure your house after it already burned down."

So, what...I am a burned down house?  I am worthless and not deserving of insurance.  If I lose my job I am not guaranteed insurance from my next one.  If there is a gap...an accident.  Who knows what will happen to me?

I am glad you can sit in your little healthy box and judge others.  I hope it is comfy in there.  I hope your child never has my disease.

Day 27 - Newly Diagnosed

Day 27 - What is the first piece of information or advice that you would give to a child or an adult newly diagnosed with type 1 diabetes?  

I do this often.  Working for a diabetes organization, I get a lot of calls from distraught families who are going through a new diagnosis.  I say the same thing every time.

It gets better.

Why?  Because it does.

Does it get easier?

No.

But, it gets better.  You get used to it.  This life becomes routine to you and it gets better.

That is all the advice I have to give.  This is the hand we were dealt.

Saturday, November 26, 2011

Day 26 - Juvenation

Day 26 - What does Juvenation mean to me?

Juvenation means...

Standing up as a community of T1D's.

Being confident and educated in my care of my disease.

Educating the general public on the different types of diabetes, warning signs, and scientific research.

Being a part of something special.  Kind of like a club.

Helping newly diagnosed families get through the tough part.

Working everyday towards a cure.

Bacon :)

Unicorns.

Life.

Day 25 - Annoying

Day 25 - What's the most annoying misconception about type 1 diabetes that you've come across and how do you try combat it?

I think this is a daily struggle that people with T1D have to deal with...the confusion between the different types of diabetes.  Most days I educate.  That's what I do.  Other days I get incredibly frustrated with the misunderstanding of the disease.  They may share a name, but in my opinion, they are hardly similar.  How do I combat this?  I can't.  I try, but I cannot convince the general public.

Someday maybe it won't be so difficult.  I know that I work everyday towards it.

Day 24 - Thanksgiving


Day 24 - Thanksgiving - Juvenation Blog Carnival

I am thankful for my family.  My mom, dad, sisters, and husband specifically.  They make my life complete.  I am also thankful for my extended family.  My grandparents, my aunt Sonya, and my cousins.  Thank you for being such a special part of my life.

I love you all.

Happy Thanksgiving!!

Day 23 - What Gives Me Hope

Day 23 - What gives me hope - Juvenation Blog Carnival

I am actually rebounding from a low.  Not too bad, just a 57.  However, as I write this blog it seems incredibly appropriate.

I hope that someday I never have to pause my life for diabetes again.

I hope that I do not pass this disease on to my child.

I hope that there is a cure before the complications take me too soon.

A cure gives me hope.

Tuesday, November 22, 2011

Day 22 - Technology



Day 22 - What is a diabetes technology you wish you had or wish would be developed?


I cannot even explain to you how ready I am for the Artificial Pancreas.  I have had the opportunity to learn so much about this product from JDRF leadership and I am beyond excited.  The algorithms alone fascinate me.

December 1st is when the FDA will decide if we are ready for it.

We need your help.  The more people who sign this petition, the more likely this will happen for it.


We are depending on it.

Monday, November 21, 2011

Day 21 - Today I learned...

Today I learned that when you get ridiculously behind on something, it doesn't get your best work.

I learned that although I did everything I normally do, my blood sugar still can go haywire.

I learned not to look at food websites...they only make you hungry.

I learned I really enjoy my staff.  They are each unique in their own way.

I learned it is okay to be behind on something and that doesn't mean you have to quit.

I learned the more I let go of responsibilities the better I feel.

I learned that next year, I am going to do some pre-planning on any 30 day blog posts.  Maybe I will try another.

Happy Thanksgiving Week!


Day 16 - 20 Juvenation Blog Carnival

Day 16 - Quote of the Day


Obstacles are great incentives - Jules Michelet


For this post, I chose the quote from my blog page.  I selected it today for the same reason I did the day I placed it.  Obstacles in life make you stronger.  My disease has made me stronger.

I am sure many of you can relate.  You can take a time in your life that was difficult and use it to learn.

Hemingway said, "The world breaks everyone and afterward many are strong in the broken places."  I believe this.  Everyone has something.  It is how we choose to live our lives that matters.

When I was diagnosed, it was hard to see what this disease would bring me someday.  The relationships I have built through the years that have been directed related to diabetes are some of my strongest.  It has made my marriage stronger.  My career stemmed from it.  Everyday it teaches me to empathize with people, no matter their situation.  It gave me a new appreciation for science.  For policy.  for national health care.  It made me stronger.

I hope it always will.  

Day 17 - Something I need to change is...


Most of us have something in our lives that is due an overhaul.  Mine happens to be exercise.

I exercise.  I exercise often.  I just don't do it often enough.

I need to change my work lifestyle so that exercise fits seamlessly into the process.  It needs to be just as important as a deadline.

Advice?

Day 18 - What I didn't expect...


I didn't expect that diabetes would make it so hard to do certain normal things.  Like pregnancy.  Once on Facebook (of course), I mentioned that I had to plan a pregnancy out roughly a year in advance.  This is a foreign concept to most people as they don't usually plan to get pregnant, it just happens.  Until I became ready for this, I didn't know the work it entailed either.

It is really hard.

Day 19 - Things you are frustrated most about diabetes?


The misconceptions!!  The myths!!  The confusion between type 1 and type 2 diabetes.  I could go on and on and on.  But, I won't.

Day 20 - Write about a blog or a diabetes website you really like and why?


I love ALL of them.  Yes, I could post the ones I read on a daily basis, but you read those as well.  I will read anything diabetes related, I just wish I had more time.  All of you, keep on blogging!

Day 12 - 15 Juvenation Blog Carnival

I am ridiculously behind on Juvenation's Blog Carnival.  So behind, I almost said "to hell with it" and completely gave up.  BUT, I won't.  I will just post two incredibly long posts and catch myself up.


I am sorry and happy reading!


Day 12 - Worst Diabetes Day


I try not to let diabetes get the best of me.  There are a lot of off days.  There are days like today, where I have yo-yo'd around 60 - 285 mg/dl.  Nothing has changed about my daily regimen  I don't know why this is happening, but it is!  


This post, in particular, may be one of my worst diabetes days.  I still cannot get it out of my head.  I am still thinking about this man.  Almost every day.


Day 13 - Motivation


What inspires you to take care of yourself when you are feeling down with health condition like diabetes?


Well, living in the diabetes advocacy bubble, it is often the kids that I see on a daily basis that inspire me to be a role model.


Recently, it has been this. I really have been focusing on that aspect of my life.


However, it is mostly my family and my spouse.  They are the ones that would be impacted the most if I didn't wake up tomorrow.  They are my biggest advocates and they inspire me to try harder.  


Day 14 - World Diabetes Day



Day 15 - Inspiration

Someone I really admire is...

I admire every person with type 1 diabetes who wakes up every day and battles this disease.  It takes perseverance and determination to make your numbers work for you.  You have to give a shit and you have to do it daily.  You inspire me Diabetes OC!  You inspire us all.

Friday, November 11, 2011

Day 11 - Best Diabetes Day

Day - 11

What is your best diabetes day?

I have written about this before.  Pregnancy.  A scary term for me, for anyone I am sure.  It is a new word for me.  It feels funny and jumbled in my mouth when I say it.  It is so insane to me to admit it. So weird.  I was always that person who really wasn't sure if I even wanted to have kids.

No, I am not pregnant.  Not even close.  But, the best diabetes day for me happens to be the day I got the green light.

I have been working with my endocrinologist for over a year on the idea of this future possibility.  A year of incessant bg checks, not a day without a CGM, crazy concentration on bolus and basal rates.  It is consuming.

It isn't easy to plan a pregnancy when you have type 1 diabetes.  You have to be very hands on.  Very.  Accidental pregnancy is detrimental to both the PWD and the future child.  It is unfair, but it is what it is.  I have had a lot of pain and disappointment in the last year, but I know that when we are finally there, we will be so ready.  I will have made an effort to do everything I could possibly do to make a nice environment for my future baby.  I know that I will give them the best body possible.

So back in May, when I got the approval, I sat on the examination table and felt the tears of joy in my eyes.  This was something I didn't realize I would suddenly want so badly.  I was suddenly overwhelmed with the love that I could share.  I still am.

Someday.  Now, it is just someday soon.

Day 10 - About You - Juvenation Blog Carnival


 

Day 10 - About You - Juvenation Blog Carnival

About you.  We want to know a little more about you.  What are your interests, hobbies, when were you diagnosed? 

Hello, I am Nikki.  I am 28 years old and I have type 1 diabetes for nine years.  It doesn't seem like nine, however.

Some things I love:

Reading
Writing
Music
Sarcasm
Traveling
Puppies
Non-Profits
Politics
Ballet

I grew up in a very small town in Southern Oklahoma.  I was a dancer, gymnast, cheerleader, etc. I love ballet, but am so much better at tap.


Cheer Competition

I could read a book a day if I had time.  I love music.  Radiohead, Jack White, Weezer.  I love it all.

I enjoy writing and traveling.  I would go anywhere.  I will.  Ireland was absolutely beautiful.


Park in Dublin.  This was on the movie, Leap Year.

Someday, I want to have a baby to complete my family.  I love my husband and my family so much.


Leaving our wedding as Mr. and Mrs.

2011 JDRF Promise Ball - My family is so supportive of me.

I hope this is a window into my life.  There is so much more to tell and so much more to live.  I hope you follow me on my new journey.

Wednesday, November 09, 2011

Day 9 - Diabetes Blog Day!

Day 9 - Dblog Day - Juvenation Blog Carnival


This is my second year to participate in D-blog day.  Last year, I wrote about things I want you to know about type 1 diabetes.  This year, thanks to your diabetes BFF, Gina Capone, who is also facilitating the Juvenation Blog Carnival.  I get to do it all!

The project is, create a scrapbook page with details from your diabetes life.  I am terribly uncreative, so I used a lot of computer sources.   I wish I could have included even more from my life with T1D. 

Nonetheless, here it is...



I apologize for my terrible picture quality.  Needed my digital camera and not my phone!



Tuesday, November 08, 2011

Day 8 - Deserted Island - Juvenation Blog Carnival

Day 8 - Deserted Island. You are on a deserted island, what would you take with you?


I have actually thought about this topic many times. If you are looking for a positive read today, you may want to move on. This isn't positive.

Throughout my life with diabetes this question has popped up a lot. I am not sure what people's fascination is...maybe Blue Lagoon? I digress.

The actual point is...this isn't an option.

I think about Haiti, or Katrina, or any other natural disaster. The people with type 1 diabetes may not make it out. To be stranded for days without insulin, food, water, etc...

It is clear what happens to us.

It isn't Blue Lagoon. We don't hang out and eat coconuts until we accidentally eat the sleeping berries and fake-die.

We don't make it that far.

There becomes no hope for us.

Without insulin...we die.

With the incorporation of insulin pumps, fast acting insulin, and not much insulin on board, life without insulin is short.

When I was diagnosed, I was in DKA. I spent the week in ICU barely hanging on. I don't want to go out like that. Death from DKA would be painful. It is full of suffering. No one wants to go like that.

Yes, this is cynical and morose and any other adjective that adequately explains the horrifying nature of this disease. But, hey, you asked.

Back to my bubble.


Monday, November 07, 2011

Day 7 - Exercise - Juvenation Blog Carnival

Day 7 - Exercise. Do you enjoy exercising? Why or why not?

NO! I do not enjoy exercising.

Unfortunately, I have a real issue with impatience. I cannot do just one thing at a time.

Ever.

This applies to almost everything.

Exercising has become a pain to me. While on an elliptical, I need to be reading emails, listening to music, and going over proposals in my head. This does not make a great workout.

A big issue for me is also maintaining a routine. With my work lifestyle, it is so easy to break my routine. Once that happens, it takes a while to get back on track. Just today I was talking about how I really need to go to the gym, but I just don't want to. I know once I get there I will be glad that I went, but while I am sitting at my desk in my late afternoon slump, I am also thinking about how I would just like to go home and do nothing! (except for read emails, books, proposals, and watch tv...all at the same time).

I know that exercise is important. In fact, my blood sugars absolutely ROCK when I have consistent exercise. It is just so hard to break the cycle.

Anyone else feel my pain?


Day 6 - Monitoring - Juvenation Blog Carnival

Day 6 - Monitoring.  How often do you test?  Do you skip a lot?  Which meter do you have?  Do you use monitoring software?  Which finger do you use the most?  Take a photo of your fingers and let's see if we can connect the dots.

How often do you test?
I wrote about testing a couple of days ago.  I am testing a lot right now.  You know, future baby mode and all.  This means, 10+ times a day. 

Do you skip a lot?
I don't skip very often.  If I do, it isn't on purpose, I just get too damn busy. 

What meter do you have?
I use the One Touch Ultra Link that came with my MM pump.  I don't really like it.  Big, bulky, etc.  I use it because it is convenient.  It sends the meter reading right to my pump.

Do you use monitoring software?
I download my Dex readings, but not my meter readings.  I plug a lot of my meter readings into my Dex, so it is a little bit of overkill to do both!

Which finger do you use the most?
My middle finger on my left hand.  Sometimes my ring finger. :)

Saturday, November 05, 2011

Day 5 - Test - Juvenation Blog Carnival

Day 5 of the Juvenation Blog Carnival.

Test.  What is your blood sugar?

151.

I test a lot.  I have mentioned before, I want to offer my future children the best environment to grow.  This includes testing often.  I currently test more than 10 times a day and wear a Dexcom Continuous Glucose Monitor. 

Some days, I have awesome results.

Heck yes, almost normal.

Others, not so much.

Halloween candy is my nemesis.



All you can do is try.  I hope you appreciate it, future baby!

Friday, November 04, 2011

Day 4 - Refrigerator


Refrigerator.  If you open your fridge, what is the first thing you would eat? And why would you pick that meal?  How many carbs does it have?

I eat on the go a lot.  My work schedule is sometimes a little hectic.  When I do get to eat at home, my fridge contains fruit, yogurt, diet coke, beer, and condiments.

When I started to write this post, I asked J what do I eat that is in the fridge? 

He said, "Like when you have to eat?"

That topic threw me off guard a little.  So many times we snack because we are low.  Very low.  For emergencies, my fridge contains several types of juices.  This is my first go-to low snack.  In the middle of the night the bad lows make it hard to swallow glucose tabs.  Juice is ALWAYS in my fridge.

I also think it is funny that my fridge is also full of so many other diabetes supplies...




I have novolog vials, at least four.
Symlin, from the days I gave that a try.
Back-up novolog pen.
Back-up lantus pen.
Boxes of medtronic sensors left over from before I had the dexcom.

Day 3 - Day in the life - Juvenation Blog Carnival

Day in the life of a T1D.  What is a normal day for you like?


7:00 am - alarm goes off, grab my dexcom.  Either curse or celebrate the results (that is, if the damn thing hasn't buzzed at me all night)

7:10 - after checking email on my smartphone, I go straight to the kitchen.  Load my meter, wait 5,4,3,2,1 - again, curse or celebrate.  Correct if necessary.  Start coffee.  VERY important step.

After shower, etc, I bolus for my preferred breakfast.  I try to bolus before breakfast that way I don't catapult myself to a high.

8:45 - working.  By now, I am normally at the office.  Drinking coffee.  Checking emails. 

10:00 - yogurt, or other snack.  Check dex.  Either have an upwards arrow because of caffeine, or going down because I overbolused breakfast.  Correct, etc.

11:30 - check bg. Usually going low from rage bolus from caffeine high.  Eat lunch without tasting :)

2:00 pm - test again.  Being crazy obsessive about my bg right now.

4:00 - snack, preparing for gym later.

5:30 - on a good day, leave work, check bg.  Get ready for gym.

5:45 - gym, watch trends on my dex the entire time. Have been caught in multiple situations at the gym where I have gone super low.

7:00 - Check bg again, verify with dex.  Start bolus for meal. Dinner.

7:30 - catch up on work related things.  Relax!  Read, etc.

Before bed - I am usually a night owl, so whenever this may be.  Check bg.  Correct.  Compare to dex.  Bed.

(usually throughout the night, dex buzzes.)

This day is typical, but others I may have super lows, forget my lean cuisine is in the microwave, reheat it 17 times, leave my snack at home, drink too much starbucks, or never make it to the gym and watch multiple episodes of the daily show on my dvr.


Day 2 - The DOC - Juvenation Blog Carnival

For the past three days, I have been in Chicago at JDRF's Fall Leadership Conference AND I have been horribly sick.  Therefore, I am two days behind on Juvenation's Blog Carnival.  Soooooo...catch up time!

Day 2 - How has the Diabetes Online Community helped you?

I am not sure I can even put this into words that do this justice.

In 2005, I had just moved away from my college town.  I was in a new city, new job, new life.  I was an adult with type 1 diabetes who was now living in the real world.  An adult!  Scary.

I felt so alone with my disease.  I hardly knew anyone with type 1 diabetes.  I really had no one to relate to about the disease, i.e., growing stages, what to do in an adult job, or town where people didn't know you.  So, I searched diabetes.  I found it.  The Diabetes Online Community.  I clicked on the first blog I saw.

Six Until Me.

Kerri's blog sucked me in.  She got it.  She really got it.  I could relate in so many ways.  It was like she was telling my story.  Hell, she was even sarcastic like me. 

So, I continued to read.  I found A Shot in the Dark.  I found Artificially Sweetened.  Diabetes Mine.  Scott's Diabetes Blog.

It was like my world opened up.

I am not alone.

I am not.

The community has grown so much since then.  So much.  Now, we have an incredibly strong presence on facebook and twitter.  DSMA has revitalized the community.  We are only growing stronger by the day.

Thank you, DOC.  You saved me when I didn't realize I needed it.

Tuesday, November 01, 2011

T1Din3 - Juvenation Blog Carnival

This year, the social networking site for people with type 1 diabetes - JDRF's Juvenation is urging diabetes bloggers to participate in their blog carnival.  So here I am!

Today's post asks PWD's to describe their T1Din3.  Three words?  This is going to be hard.  JDRF's is Cure.Treat.Prevent.  Easy enough.

Here is a glimpse of my T1Din3...

Cure. (who doesn't put that first, we dream about it)

Unfair. (can't make it go away, it is unpredictable, it is unfair)

Life. (goes on)

Monday, October 24, 2011

Guilt

Sometimes I feel like having diabetes leaves me with a bad taste in my mouth.

You know the one.

Guilt.

There are several things that make me feel sub par.

Sibling guilt.  Once my sister said, "you get all of the fun diseases."

What?

Then I realized, I get the attention.  Albeit, the unwanted attention, but nonetheless it occupies people's time.  They fund raise for my walk.  Attend my functions.  Etc.  I would do anything in the world to trade it, but sometimes it is what it is.

Food guilt.

When I test and get a 343 mg/dl, but still eat anyway.  I have the guilt of doing something I am not supposed to.  You. Are. Harming. Your. Body. 

But, I am hungry.

Burden.

I have blogged about it before.  I don't want to leave my family or friends with my mistakes.  I don't want them to hurt.

a1c

How many people with diabetes feel the instant disappointment when your a1c comes back and is higher than before and you know you worked so hard this last round?  You feel so guilty and confused and hurt.  It isn't fair.

Children.

It is a fairly small percentage, but I don't want to pass it down.  It terrifies me.

Life is too short to be concerned with it all.  Tomorrow is another day.

Thursday, October 13, 2011

Why? It is Important.


Unlike when I first started this blog, I try not to make it too much about JDRF and more about my life with diabetes. That being said, sometimes it is interchangeable and needs to be partisan (to throw in a little politics for you).

Right now, JDRF is petitioning the FDA for what I call a "right now cure," the artificial pancreas. The Artificial Pancreas Project has been one of the most exciting things on the research radar in the past three years. I have had the pleasure to hear from JDRF researcher, Dr. Aaron Kowalski, who has been in the lead on this project since the beginning.  "An artificial pancreas would measure blood sugar through a continuous glucose monitor (CGM), which continuously reads the glucose levels through a hair-thin tube inserted just below the skin, typically on the stomach. The CGM would beam those readings to an insulin pump. In an advanced system, the pump would house a sophisticated computer program that would automatically calculate the necessary amount of insulin, based on the CGM's glucose readings, and deliver the right amount of insulin."  (JDRF)

This is exciting. This is close. This is now.

All we need is for the FDA to approve it. You can do your part by visiting the link below and signing the petition. Currently, it is 25,000 strong, but there are many more of us. It should be stronger.

Please help if you can.

CLICK HERE!

In JDRF's words... "An artificial pancreas represents the most revolutionary advance in treating type 1 diabetes since the discovery of insulin. This device, now under development, will dramatically change the lives of people with type 1, allowing them to maintain tight control of blood glucose levels, thereby significantly reducing the risk of life-threatening fluctuations and freeing them of much of the daily burden of managing their disease. The speed with which an artificial pancreas reaches patients in the United States will be determined by crucial guidance to be issued by December 1st by the U.S. Food and Drug Administration. The FDA needs to hear from you that type 1 diabetes families are watching, we are waiting, and we are urging that the agency seize this moment to lead, and not stand in the way of bringing this innovative and life saving device to market. Raising your voice now is critically important because recent FDA actions create a real risk that the agency may throw obstacles in the path of researchers, scientists, and manufacturers who are poised to launch the outpatient clinical trials required to demonstrate the safety and effectiveness of an artificial pancreas. You need to tell the FDA that delays are not acceptable. You need to tell the FDA to keep their promise to the children and families affected by type 1 diabetes. You need to tell them that the health and even the lives of your loved ones are at stake. Sign the petition and check the box to receive emails from JDRF so you can stay up to date on our next steps for the AP.

More information about the JDRF Artificial Pancreas Project can be found online at www.jdrf.org/artificialpancreasproject. The site includes information for people with type 1 diabetes about research leading to the development of an artificial pancreas, as well as interactive tools, project timelines, chats with researchers and access to information about clinical trials." (JDRF)

Wednesday, October 05, 2011

Hi, My name is Nikki...


I have a problem.

Some people have serious addictions...I am not mocking that. My addiction to halloween candy is bordering serious.

I need an intervention.

This is my 24 hr Dex reading.


That is scary. It doesn't even need a costume.

I better hit the gym if I am going to maintain the next three months.

Monday, September 19, 2011

What you may not know...

I narrowly missed Invisible Illness Week, but I still wanted to share as it is important.  Here are 30 things I want you to know about my invisible illness.

1. The illness I live with is: type 1 diabetes.

2. I was diagnosed with it in the year: 2003.

3. But I had symptoms since: About two months before diagnosis.

4. The biggest adjustment I’ve had to make is: Wow, is there one big adjustment with diabetes? It changes your whole life.

5. Most people assume: That there is only one type of diabetes, type 2, and that we are all the same. Type 1 diabetes is an autoimmune disease…it has nothing to do with eating habits or exercise.

6. The hardest part about mornings are: Setting my day up to have good blood sugars. If I don’t eat breakfast, correct, or fly through the morning pretending diabetes doesn’t exist, I usually have a crappy day of meter readings.

7. My favorite medical TV show is: House, or Scrubs.

8. A gadget I couldn’t live without is: Meter. But, I am also pretty attached to my pump and my dexcom. I also don’t want to live without a smart phone ;) Just kiddinggggggggg.

9. The hardest part about nights are: Anxiety. Blood sugars can be a little unpredictable.

10. Each day I take 1 pill & 1 vitamin: On top of type 1, I also have horrific allergies. I also cannot live without insulin, so I take that alllllll dayyyyyy.

11. Regarding alternative treatments I: I have type 1 diabetes, there are no other alternative treatments. No insulin, I die. DIE! So, keep your ridiculous bullshit treatment to yourself. Don’t you think if I could exercise this away I would!! DIE without INSULIN, get it?

12. If I had to choose between an invisible illness or visible I would choose: Invisible.

13. Regarding working and career: Diabetes is my career. Some days I wish that weren’t the case, but it has molded me into the person I am. I would have washed the windows at JDRF to work here. Now, I am happy to say, I would still do that.

14. People would be surprised to know: I am actually a really good diabetes role model for teens. I get it. I take really good care of myself.

15. The hardest thing to accept about my new reality has been: About to hit the ten year, not new anymore.

16. Something I never thought I could do with my illness that I did was: This has yet to be determined.

17. The commercials about my illness: Are usually dead wrong. Or, aimed at type 2 diabetes.

18. Something I really miss doing since I was diagnosed is: Not carrying anything with me when I leave the house.

19. It was really hard to have to give up: I wanted to be an astronaut, but now, no such luck. Just kidding! Your life is what you make it!

20. A new hobby I have taken up since my diagnosis is: Don’t have one!  Carb counting?  :)

21. If I could have one day of feeling normal again I would: I would not know what that means at first.

22. My illness has taught me: Sometimes life deals you a different hand. It is what it is. Also, science is super important. I wish you could understand that America!

23. Want to know a secret? One thing people say that gets under my skin is: “My grandmother had diabetes…and she died.” No. 1, how is that appropriate? No. 2, probably not the same type, and No.3, does that help you relate to me? No!

24. But I love it when people: Ask questions and become educated.

25. My favorite motto, scripture, quote that gets me through tough times is: I am not sure I have one. My family, friends, and myself get me through the tough times.

26. When someone is diagnosed I’d like to tell them: It gets better. It may not get easier, but it gets better.

27. Something that has surprised me about living with an illness is: I am still the same person.

28. The nicest thing someone did for me when I wasn’t feeling well was: Encourage me.

29. I’m involved with Invisible Illness Week because: I have an invisible illness. One that people don’t always understand. I feel I need to…I have to.

30. The fact that you read this list makes me feel: Like we are changing the view!

Thursday, August 18, 2011

Melancholy


My posts have been melancholy lately. I apologize for that.

The great thing about blogging about life with diabetes is that you can express your feelings and emotions about this disease as you are feeling them. You can update the world with a real-time response of your life. This can be good, or bad. Most of the time it is cathartic to release – other times I look back and think, wow, I am incredibly cynical or, I don't even feel the same now.

A couple of days ago, I had a conversation with my best friend in the entire world, Eric. I told him I was sad and that I couldn't snap out of it. His first reaction was, is it your health? Is something going on with your diabetes?

In all actuality, it had nothing to do with diabetes. At all.

And then he said it...

I am always worried you are going to die before me and I don't like that.

I think my heart stopped beating when he said that.

I hope that didn't offend you, he said.

No...actually, it didn't, I choked out.

You know, it didn't offend me. It was touching in a way. However, I started to worry. Am I a burden like that to everyone? Do my close friends and family worry about losing me before them?

Yes. They do.

I have a great A1c right now, I wear a Dexcom, I check so many times every day. I exercise, I eat right, I am careful.

Does that matter?

The recent deaths that have been consuming the diabetes community show that it doesn't.

Diabetes isn't selective.

We all go to sleep at night with the unknown.

My heart breaks for my husband, my parents, my siblings, and my friends. If I could wish it away, it would be gone. Forever.

Tuesday, August 16, 2011

Broken

I need an overhaul of my blog. While reviewing formats of other blogs, shamelessly begging for my domain name, and researching new ideas, I stumbled across Kerri's Post Secret Post. I forgot how much that particular post affected me. Scrolling through the many comments, I went to a dark place.

Truth be told, there are things going on in my life right now that have left me drowning in the negative.

It is consuming me.

In many ways, I am so responsible. Always. I forget to put me first. I follow the path, I do what is right. I take all of the steps in the right order. But, where does that leave me?

Broken.

I just can't put on the smile anymore.

How do you do it?

(I realize this went from a blog editing post, to something else, but I am going to leave it)

Friday, August 12, 2011

Exercise and Apple Juice



I need to get serious about exercise. I go through stages where I am so motivated and then drop off. This does not result in better blood sugars long-term or weight loss. The truth is I used to be athletic. "Used" to be athletic. Now, I am a far cry from "in shape" unless the shape we are referring to is...round.

Last night, armed with motivation and a blood sugar of 154 mg/dl, I went to the gym. Not only did I go to the gym, I went to spin. Many of you know spin is an awesome workout; it can be very intense and is a SUPER calorie burn. I felt good, I felt strong, and I felt like I could do this more often.

After class, I got home. 81 mg/dl. Awesome. (Yes, I am a self-talker) Still feeling great, I made veggie soup and continued to reel in a positive self-image of eating right and exercising.

Fast-forward six hours later. I am in a deep sleep, the kind where you don't even move. I wake up clumsily, something doesn't feel right.

I look at my clock, 1:41 am glowing in bright blue.

Close my eyes again.

2:04 am.

More self-talk. Nikki, move. Go check.

2:21 am.

Drenched in sweat, lips are tingly.

I finally realize. I am low. Really low.

So, I say it out loud to no one.

I am low.

Stumble to the kitchen.

38 mg/dl.

Shit.

Panic sets in. 38! What?

I am alone, I am low. Alone and low – great combination.

Two juice boxes and a granola bar later, I get back into bed. I don't even think about how this blood sugar has racked my body.

This morning, I wake up feeling awful and full.

111 mg/dl.

And so goes my day...such is life.

Monday, June 20, 2011

In Sickness and in Health


My anniversary is in two weeks. I will be married for six years.

Six.

Count them.

I have never been married to someone with a chronic illness. I am the person with the autoimmune disease. I am the one I like to feel sorry for on depressing diabetes days.

Today is not that day.

Spouses/significant-others play a role in chronic illness that cannot be defined. They are the caretaker, encourager, sympathizer, activist, and much more. I cannot even put it out there in a way to do it justice. What he means to me is so much more than your traditional relationship.

We were married right out of college. Not ideal in the 21st century, however, medical insurance warranted it. When I stood on the altar that summer day and held the hand of the person who agreed to love and cherish me, in sickness and in health, until death do us part, I did not quite put the ramifications into perspective.

In sickness and in health.

I don’t think of myself as “sick” most of the time. I appear healthy. I look normal (despite the infusion set and the tubing sticking out of my shirt or my pocket).

Normal? What is that?

Since my diagnosis, living with diabetes has changed in many ways. What has not changed is the support J offers me.

He is in it.

To end it.

He introduced me to JDRF. Came to my pump training. Researched insurance. Formed a Walk Team. Rode in Death Valley. Wrote to congress. It goes on and on. He is my biggest advocate.

He gets my meter in the middle of the night when my Dexcom is alerting and I am too low to move. I lift my hand and hand him my finger. He never says a word. Just is there. He makes sure every morning that I am alive as he leaves for work. Even when he is out of town, I get a call. Never misses a day.

Even when my blood sugar was so low that I said things I didn't mean. He was there. When I threw a bowl of crackers at him at 1:00 am because I was desperately trying to gain control. He was there. When he is begged me to drink juice in the middle of the grocery store so I can slip back into coherency. He was there. When I cry because I am so afraid that my children will one day have this disease, he holds me and makes my thoughts disappear.

Having diabetes can be a solo journey, but having someone to lighten the load makes a world of difference. Thank you for everything, especially re-filling my pump cartridge.

Until death do us part.

Thursday, May 26, 2011

Why?

Working at JDRF it is really easy for me to become overwhelmed with the sadness that can be type 1 diabetes. Now that there is a vast online community of people with diabetes we more often than not hear the horror stories. The elusive “it can happen” is no longer elusive. It happens…and it sucks. It isn’t fair. Kids die, teens die, adults who have been living for more than forty years with the disease, just don’t wake up. I am selfish. I want to believe that it is fixable. That if you do everything right, it won’t happen. But, it does. IT DOES. Yes, this is a pity party. Yes, this is me saying, I DON’T WANT TO DO IT ANYMORE. I don’t. I don’t. I don’t.

I shouldn't have to talk to a man who kissed his wife goodbye every morning before he left to make sure she was fine and two days ago, she was not fine. She didn’t wake up. He will remember that forever. I will remember that forever. I cannot stop thinking about what he said. She didn’t wake up. My husband should not have to say that one day. NO ONE SHOULD. No one.

I am upset. I am upset about diabetes myths, I am upset with the unfairness and randomness of it all. I am upset that my job brings me joy and makes me miserable at the same time. I am just upset.

It isn’t elusive. We can’t exercise and not have to take the drug that kills us…don’t you think we would if we could? Stop judging. Stop saying that if we are high we don’t take care of ourselves. Stop saying that if we were to eat healthier we wouldn’t have to take insulin. Stop judging. We are doing the best we can…

Pity party over. It could always be worse. Except if I don’t wake up tomorrow.

Tuesday, March 22, 2011

On the Horizon


Having type 1 diabetes takes a lot of planning. As a fairly organized person, I take pride in keeping it together. One thing that must be planned is type 1 and pregnancy. After countless hours of thought, I am ready to take the plunge. There is something about motivation when it doesn't just affect you. Here's hoping.

In order to be proactive about pregnancy and an autoimmune disease is to prepare dilligently. Your HbA1c must be in a normal range of under 6.5%, which means your bloodsugars are kept in steady control. Pre-pregnancy appointments with your OB, Endo, and other related doctors are a must. There is a lot to worry about, high blood sugar levels can lead to birth defects.

If you peruse the web about diabetes and pregnancy you will find a million horror stories. But, the stories that really matter to me are the success stories of the DOC, here, here, and here. Needless to say, I am inspired. I just hope I do it as well.

Glad I was finally able to write this. Cross your fingers for J and me, we need it.