NHBPM: Let It Be

Today's Prompt: Let It Be. What’s something that bothers you or weighs on you? Let it go. Talk out the letting go process and how you’re going to be better to yourself for it.

If you've been around my blog much at all, you already know one of my biggest challenges... the school clinic lady.  Her lack of interest, lack of accountability, and flat-out rude comments really, really, get to me.  We can be having a pretty good d-week here at home, and one negative comment from her to my daughter, or one phone call from her will really set me off.


Most of the time, I bounce back from these "incidents" with the clinic lady pretty quickly.  I take it as an opportunity to attempt to educate her further, or, when needed, a reason to meet (yet again) with school officials to work out a problem.  I try to turn it around in my head to be an opportunity rather than a problem.

But sometimes.... sometimes I can't get her/it out of my head.  I can't wrap my mind around the notion that she is the person I am forced to rely on when my daughter is at school.

So, I try.  I make myself look at the very bottom line: Was Rosie hurt?  Was there serious potential for harm?  If not, I try really hard to make myself take care of whatever needs done and then stop dwelling on it.  I mentally move on.... at least until the next incident, which tends to set me off again.  Ugh. 

This post was written as part of NHBPM – 30 health posts in 30 days.

NHBMP: Elevator Blog

Today's Prompt: Elevator blog. If you were in an elevator with someone and they asked about your blog. What would you tell them?

 I'd tell them to stop by to read about our experience with Type I Diabetes. 

I'd tell them that it's my place to rant, rave, or share links from the online diabetes world. 

If they are a PWD or a parent, I'd tell them to check out my sidebar, because I have a lot of great d-blogs linked up there.

I'd tell them that I'm not going for any writing awards or book deals here, I'm just sharing, because sharing with the DOC (reading others' blogs, writing this one, tweeting, etc.) is what keeps me sane in this crazy d-world!

This post was written as part of NHBPM – 30 health posts in 30 days.

Diabetes Around the World

I kind of fell off the wagon with the NHBMP "30 Posts in 30 Days' thing... life happened, and I didn't have time to blog several days this past week.  That's OK.  I'll still hit some of the prompted posts and some other things during Diabetes Awareness Month!

I found this while working on a presentation for World Diabetes Day and thought it was very interesting: 


++ Click to Enlarge Image ++

NHBMP: What gets you down?

Today's Prompt: Case of the Mondays. Write about something that gets you down, burns you out, or makes you sad. Purge it in a blog post.
Turn it around at the end. Tell Tuesday why you’re ready for it.

The thing that gets me down about Rosie's diabetes is that it's always there.  When she's at a birthday party, I am hovering in the background with carb counts at the ready.  When she's running around the park, I'm there with a meter and juice box, making her take a break while her friends keep playing.  When she's peacefully sleeping, her Dex is buzzing to alert us that she's going low.   It's always there, lurking in the background.


But, you know what?  That's also the thing that keeps us going.  Because she doesn't let diabetes stop her.  It's there, sure, but it's just a minor speed bump in her daily life.  She DOES go to birthday parties and to the park.  She does sleep peacefully, knowing that her technology (and her parents!) are keeping an eye on those pesky blood sugars. 


Diabetes is always there, but it doesn't stop her from enjoying all the things any other 8 year-old enjoys!


This post was written as part of NHBPM – 30 health posts in 30 days.

NHBMP: If I could do anything...

Today's Prompt: If I could do anything as a Health Activist… Get aspirational. Money is no longer an option. What is your biggest goal that is now possible? How could you get there?
Now bring it back down to size. How much of this can you accomplish now, in a year, in five years?

Anything?  Well, of course, I'd find a cure for Diabetes.  Specifically, I'd like a cure that would kickstart the dead pancreases that Type I Diabetics have, and would also restart the pancreases of Type IIs. Since I am not of a scientific mind, my best bet would be to be a millionaire who could fund the best researchers out there. I'd advocate for that until my dying breath!

More realistic?  I'd like for the world at large to learn about the types of Diabetes and STOP the rude, insensitive comments that abound.  Asking a Type I if they ate too much sugar... telling a Type II that they just need to exercise more.... telling any type that there's a miracle cure in the form of algae, cinnamon, tea, you name it.... these comments and more would be eliminated from every diabetic's life! 

Hopefully, I AM doing something to help educate those I come in contact with- I speak up, offer to speak to groups, make posts in social networking sites, educate school friends and staff, and do anything else I can to get the word out.


This post was written as part of NHBPM – 30 health posts in 30 days.

Today's Prompt: 5 things that changed my life. For better? For worse? List 5 things that changed your life as a patient, caregiver, or Health Activist and how.

This is a great prompt, and one that really made me think in terms of relating it to Diabetes.  Most of these things aren't really things, but events or people.


1.) Straight out of college I started working in a nursing home as the Activity Coordinator.   My BS is in Art Therapy, so the world of medical diagnoses and working in a health care system was fairly new to me.   You can't spend years eating lunch with nurses who speak "medical" (not to mention discuss any type of bodily function while eating- gag) without picking up medical knowledge, terminology, and, an idea of how the health care system in general functions.   I learned that doctors can be questioned, and sometimes, even the medical people don't know what to do for someone. 

2.) I married my husband.  Duh-- of course that was life-changing, right?  But related to my life as a health care advocate, he is my support, and he pushes me to not back down.  He's a  Police Sgt. and he doesn't take any nonsense from anyone, and I've definitely picked up some of his ways of dealing with people over the years.  He encourages me to speak up and backs me up when I'm doing "battles" with the school or with a doctor.  Knowing that he always has my back is huge for me.

3.) Both of our kids were born prematurely, after numerous hospital stays for me (preterm labor throughout both pregnancies). and many scary events when we thought we'd lose them.  This was when I found my voice in the health care system as a patient.  I'd worked in health care for years, but learning to stand up for myself and my kids as patients in a NICU was a whole new experience.  I learned to ask the questions, do my research, and not accept anything less than a full explanation when I needed one. My inner Mama Bear was awakened!


4.) As a baby, our son had developmental issues and at one point was testing borderline for Autism.  He wasn't developing in terms of gross motor skills, and he wouldn't eat- he had lots of issues with feeding.  Mama Bear was fully awake by now, and I pushed for therapy when the doctor would have waited a while longer. We got into a wonderful therapy program (physical, occupational, and speech) that made a HUGE difference in my son's life.  By preschool, he was at the head of his class, with a teacher who was shocked to hear that he'd ever had any kind of issues.  That gave me complete confidence that I need to always, always trust my gut feeling.  (I'm positive that my kids have very vocal guardian angels who help me out!)

5.) And finally... obviously, my daughter's diagnosis with Type I Diabetes changed all of our lives.  I think that one is pretty self-explanatory.




This post was written as part of NHBPM – 30 health posts in 30 days.   
(This post is actually going to show up on 11/5 because I saved it as a draft rather than hitting the "publish" button.  Oops!)

NHBPM: My Post-Post Blogging Process

November is also Diabetes Awareness Month!

Today's Prompt: What happens after you press “publish.” Write about your post-blog-writing process. Do you immediately tweet a link? Email it to everyone? Re-read it for spelling errors?

The first thing I do is view the post on the blog itself, to make sure the formatting is OK.  Nothing drives me more crazy on my blogs than text that's misaligned or weird spaces in my posts.  If needed, I correct those.

Usually after writing on my own blog I go out and comment on other's blogs for a few minutes.  I know I enjoy getting comments, so I try to leave a few for others. 

Sometimes I'll tweet about the post if it's something I want some feedback on, but I don't do that with every post.  (Maybe I should?)

That's about it for my post-post process.  :)  

This post was written as part of NHBPM – 30 health posts in 30 days.

NHBPM: My 18 year-old self

November is also Diabetes Awareness Month!

Today's NHBPM prompt: Dear 18 year old me. Write a letter to yourself when you were 18. Be sure to tell yourself what to do more of, what to do less of, and what you have to look forward to in the next few (or several) years.

Wow, 18 year-old self... you have no idea what's ahead for you.  Not only will you marry that guy you're so fond of having political arguments with in college, but the two of you will eventually be blessed with two beautiful, though premature, children.  Just when you've finished getting your son through his physical, occupational, and speech therapy and you think life is finally going to be "normal", your daughter will be diagnosed with Type I Diabetes. You'll come to learn that she has been blessed with a strong spirit and a personality that allows her to take anything in stride.  Your world will never be the same, but you'll all be fine, I promise!


This post was written as part of NHBPM – 30 health posts in 30 days.

NHBPM: Our Lives Would Make Boring TV

 Today's Prompt: My TV Show. Your blog is being turned into a TV show! Congrats – you’ve earned it. In fact, you get to co-write it. Write about the TV show based on your life or blog.


Hmmmm.... if this blog was turned into a tv show, I'm not sure it would last very long.  Who wants to watch a sporadic show ranting about the good, the bad, the normal day-to-day life we live with Rosie's Type I Diabetes?  

A show based on our life would show me as harried mom who lives on coffee and is addicted to her phone.  The daughter character, Rosie, would be an adorable eight year-old who is very outgoing and has never met a stranger.  Rosie's brother would have to be played by a quiet five year-old who likes to know how things work.  And Rosie's dad would be a very hard-working family man.   Throw in some extra medical gear and some crazy extended family members, and you have the makings of our show. 

This post was written as part of NHBPM – 30 health posts in 30 days.

NHBMP: the books I could write...

This post was written as part of NHBPM – 30 health posts in 30 days.  Today's prompt: Titles of my future book. Say you’re writing a book about your life, community, condition, or Health Activism. Come up with 5 working titles and a quick book jacket synopsis.

A book?  LOL!  It would really depend on the day that diabetes has thrown us as to what "mood" my title might be.   I might write:

• Diabetes: There Isn't a "Good" Kind
• Taming the D-Monster
• My Life as a Substitute Pancreas
• Diabetes Didn't Stop Her
• The Sweet Life   (Get it? Parody of one of my kids' favorite shows, The Suite Life?)  

No matter the title, the jacket cover would have to describe our story of triumph over the monster that is diabetes.  I'd share stories about how we did our best to make life normal for Rosie from the day she was diagnosed, and how she's come along so far in life.

Think you're up for blogging every day in November about health?  Check out WEGO's challenge here.

Wear Blue on Fridays!

Are YOU wearing blue every Friday in November for Diabetes Awareness?

.

Which comes first...

... high blood sugars or not feeling well?    In our house, it's always a guessing game.  Sometimes, high blood sugars for a couple of days seem to come just before Rosie starts showing symptoms of the flu or a bad cold. 

Other times, like today, she just doesn't feel good... achy, tired, headache... but I blame that on being mostly in the 300s all night long last night.  I would imagine I wouldn't feel very good after staying that high for 8-10 hours, either.    I'm going to change her site and crank up another temp basal after she finishes breakfast. 

At any rate, we're home today to monitor for ketones and get some rest. 

 

"Magic Cure" Comments

Today I received a new comment on an old post over at my other blog with someone claiming that the Lord led them to a healing center where they were cured of diabetes, and all I need to do is have faith and get to that place. 

Now, don't get me wrong, I am a firm believer in the power of God... but comments like that, especially anonymous comments, really bother me.    I'm offended both as a d-caregiver and as a Christian, because I don't think things like this do much for promoting faith to those who are not believers.   In fact, if I wasn't a Christian, I'd probably chalk this up to just another one of those crazy "church people".  

I'd be willing to bet that the person was "cured" of Type II Diabetes, not Type I, which either means that they didn't read enough on my blog to notice what kind we're dealing with, or, they  have no idea what the differences in the two types are.

If I, or a family member, had truly been miraculously cured of something, you can bet my name would be on any comments or references I made to such healing.  My name and comments of praise would be all over the DOC and anywhere else I thought I could reach people.  The fact that this comment is anonymous seems fishy to me... even more so since it's on an old, old post that has nothing to do with diabetes. 

Grrrr.  Anyone else tired of these kinds of comments?   Or am I just especially tired/grumpy/cynical?  ;)

It's not you, it's me.

Sometimes, I make myself scarce around the DOC.   I click the "mark all as read" button in my blog reader instead of reading my favorite d-blogs.  I stay away from Twitter.  I don't visit the forums of CWD. I delete d-related emails from various companies, unread.  

It's not that I don't want to connect, or learn about the latest study, or pray for the latest family in need.... it's  just, well, sometimes, it's just all too much.   Sometimes, just taking care of Rosie's d-stuff is all I can handle.

So, I pull back.  I take care of Rosie and my family, I do what I need to do, and I go about our normal life.   And then, a few days or even a few weeks go by, and I find myself missing it.  Missing the connections, the support, the knowledge that there are a lot of others out there fighting this same battle.  It's a strange thing, this DOC of ours... but I'm so thankful to be a part of it.  

15 carb Juicy Juice Deal

EDITED 11/18/12: This is one of my most visited posts, but sadly, Amazon no longer offers this "subscribe and save" deal on Juicy Juice.    I'll update again if I find a similar deal.  

 Juicy Juice 4oz boxes are one of those things that it seems nearly every diabetic child I know always has on hand.   (If you're not familiar with these, they are the toddler-sized juice boxes... perfect for a diabetic who is low and needs about 15 grams of carbohydrates to bring their blood sugar back up.)  Unfortunately, they are not the cheapest thing to have on hand, and we go through a lot of them.

Locally, I can buy an 8-pack of the 15 carb Juicy Juice boxes for around $3.99.  I generally wait until they are on sale if I can, but if we're out of juice boxes for school, I wind up paying that $3.99.  Ouch. 

Amazon sells the Juicy Juice Apple, 8-Count (Pack of 5) for $11.12, which breaks down to $2.22 per 9-pack.  Other flavors are the same price, but Rosie is partial to the apple. Five packages of the 8-packs at my local store would be $19.95.... so we're already saving money, right?  

It gets better.   Sign up for the "Subscribe and Save Program" to save 15%, and your total price drops to $9.45.  You can set it to automatically ship another box to you once a month, every other month, every six months... whatever you choose.  Or, you can simply cancel after the first shipment.. you're not obligated to continue.

AND... you don't need to pay shipping!   The juice boxes are eligible for Super Saver Shipping, so if you spend $25 in that transaction, they ship for free.  Or, you can join the free Amazon Mom program (you don't need to be a mom) and get free shipping any time with no minimum purchase.

I am a member of the Amazon Mom program, so we're paying $1.89 per 8-pack  and we receive free 2-day shipping... or $9.45 in total for 40 juice boxes.   I've been doing this deal for a couple of months now, and it works out great for us!     Check out more Works for Me Wednesday tips HERE!

Disclaimer: Obviously I have included some Amazon affiliate links here.  Nobody asked me to link up or post about this deal.  I would make a few pennies if you choose to purchase something through my links, but that's not why I've linked up... I truly feel that this is a great deal on a necessary d-supply, and I wanted to share!

Meltdown Week

Long story short: my patience was all used up with the school Clinic Lady (not a nurse) by about Tuesday of this week.  I have had numerous problems with this woman and her attitude in the past, but up until now, I have tried to remain fairly polite and respectful.  However, I pretty much lost it on Thursday.

Clinic Lady called me at work on Thursday to tell me again that Rosie wanted Motrin  (she gets bad headaches when her blood sugar comes down quickly) but she doesn't have a doctor's order for it.  I say again, because this was at least the fourth time this year that we have discussed this issue... twice I had other witnesses present.  The doctor's order was faxed to the school along with all her other orders on August 11th.   I was very short with her on the phone, trying to maintain my cool, and reminded her that indeed she DOES have an order there.   Clinic Lady proceeds to dig through Rosie's chart  while I remain on the phone and finally, guess what... found the order.   Argh.  She also repeatedly tells me that she doesn't remember ever talking about this before, she doesn't understand why she doesn't have the order, blah, blah, blah.   I remain very short with her and get off the phone to return to my work day, but I was mad.

The repeated conversations about the Motrin order was just the latest in a long string of "forgotten" things, misunderstandings, and blatent disregarding of my directions regarding Rosie's care at school.  Earlier this week Clinic Lady treated a low blood sugar of 40 with only TWO glucose tablets.  Another day she messed up Rosie's carb counts and blood sugar, reversing the numbers.   I understand that we all make mistakes, but this stuff has become a serious pattern, and the attitude that accompanies all of it is completely unacceptable.  I've had enough at this point and I decide to call Clinic Lady's supervisor, a nurse in the school system.  

As I am on the phone setting up a meeting with the nurse, Clinic Lady calls me back at work, so I get off the phone with the nurse.  Clinic Lady then proceeds to tell me that I WAS RUDE TO HER and she feels the need to "clear the air".   Yep, that's when I totally lost it.   Rude??  Really?  I have never said most of the things that go through my mind when I deal with her.  Being rude would be the least of her problems if I did! 

We proceeded to "clear the air" in a conversation that lasted about half an hour.... I covered the many reasons I no longer feel that Rosie is safe in her care.  She came back with plenty of excuses and plenty of comments about not knowing what I wanted her to do.  (Reading the one-page very simple school plan I wrote and actually following it would be a good start!)  She ended the call with telling me that she thinks we both need to "learn not to over-react".   I was furious, but I could see that the phone call wasn't getting us anywhere.  

On Friday I met with two nurses from the school district and we covered all the things that medically need to happen to keep Rosie safe.  They weren't especially interested in my concerns over Clinic Lady's attitude, but I understand that they probably had already been told by Clinic Lady that I was a psycho mom or something along those lines.   The nurses will be stopping in at school twice a week for a while, and I'm to call them if things aren't improving.   We'll see....

Amy's 30 {Invisible Illness Week as a D-Mom}

This week is National Chronic Invisible Illness week and I've enjoyed reading this meme around the DOC.  I love how everyone's answers are a little different, and a little bit the same. 

1. The illness we live with is: My daughter's Type 1 Diabetes.   And she's being closely monitored for another auto-immune condition that has to do with hormones and growing too fast... we don't even know the name of it yet. 

2. My daughter was diagnosed with it in the year: 2008

3. But they had symptoms since: about two months before diagnoses... of course we only realized that in hindsight

4. The biggest adjustment I’ve had to make is: Living without sleep. 

5. Most people assume: that Type I is just like Type II and I am simply an overly protective mom.

6. The hardest part about mornings are: Well, first of all, just because they are mornings... and I am not a morning person by any stretch of the imagination.   But seriously, I wake up and immediately pray before my feet hit the floor that Rosie has been OK since whatever time I last checked her... that could be anywhere from an hour to four hours previously.  Mornings scare me because that's when she has had both of her seizures... both times I discovered her having one when I went to wake her for the day.  ::shudder::
 
7. My favorite medical TV show is: House.  LOVE him.  He says the things the rest of us wish we could!

8. A gadget I couldn’t live without is: Rosie's meter and insulin pump.  (OK, I cheated, those are two seperate things but they work SO well together... they're her d-management combo!)  Although these days her Dexcom is certainly ranking right up there.   

9. The hardest part about nights are:  Sleep, or lack thereof.  I wake up three to six times a night to check on Rosie.  Some nights, like last night, I'm also awakened by numerous alarms on her Dexcom.  It's hard to get back to sleep, and then when I do, it seems like just moments before the next alarm. 

10. Each day I take pills &  vitamins: I don't take any daily, neither does Rosie.   I have vitamins and supplements that I probably should be taking daily, but nothing prescribed.
 
11. Regarding alternative treatments I: am interested, but only in legitimate science.  Please keep stories of how my child can be cured by algae or tea to yourself    I do use some herbal medicines for myself, though.

12. If I had to choose between an invisible illness or visible I would choose:  I guess invisible.  Since I work in a nursing home and take residents out regularly, I know all too well the stares that some of them receive in public because of a disablity or illness.  My daughter has the option to hide her diabetes most of the time if she prefers to do so.

13. Regarding working and career: I work part-time, and I have ever since my {preemie} children were born.  I am blessed with an understanding boss who doesn't get upset when I call off on a bad d-day, and she allows me to keep my cell phone on me so the school can reach me during the day.

14. People would be surprised to know: that I wasn't always this outspoken, mama-bear kind of person.  I used to be very shy.  Dealing with doctors and nurses in the NICU with both of my preemie babies helped me break out of that, and by the time D came along, I had no qualms at all about really speaking up and obtaining the care/ help/ information we need.

15. The hardest thing to accept about my new reality has been: That I can't fix it.  I think I've accepted that most of the time, but periodically I find myself emotional when something comes up again.

16. Something I never thought I could do with this illness that I did was:  allow my daughter to attend slumber parties.  I'm not saying it's been easy, but we've done it three times now, and each time has been a little easier than the first one.   

17. The commercials about their illness: I'm stealing Meri's answer here: "Are usually geared towards 70 year old type 2 diabetics."

18. Something I really miss doing since they were diagnosed is: carefree, unplanned stops to grab a milkshake or another treat without having to stop and calculate if she can have it right now, how long since the last meal, how much insulin on board, how many carbs, etc.

19. It was really hard to have to give up:  Not to sound like a broken record, but SLEEP.   (I feel selfish just typing that.... of course I'll give up my sleep every day for the rest of my life to keep my child safe.) That's about the only thing I have truly given up... everything else was just modified a bit, and life moved on.

20. A new hobby I have taken up since their diagnosis is:  The DOC!  I blogged before diabetes,  but since diagnosis I've turned to the DOC on Twitter, in forums, and most recently, by starting this blog. 
 
21. If I could have one day of feeling normal again I would: Drop my daughter off at a slumber party and not even ask what she ate the next morning.... let alone come back three times during the night, train the adults in charge, and sit by the phone a nervous wreck.  

22. My daughter's illness has taught me:  That she is amazing, resilient, and strong.  She handles the challenges that D throws her without skipping a beat.   I think she was blessed with a personality that makes her able to do this.

23. Want to know a secret? One thing people say that gets under my skin is:  Ohhhh.... the too-common statements that people make about how they don't their kid have candy so they won't get diabetes, or even worse, jokes/comments about how my kid must have eaten too much sugar and that's how she got diabetes.  That grates on my very last nerve and I REALLY have to bite my tongue, because most of the time people truly are ignorant of the facts.

24. But I love it when people: Ask questions and really want to know the answers.  It touches me when someone takes the time to learn about what we're dealing with.

25. My favorite motto, scripture, quote that gets me through tough times is:  I have two:

• Plato's quote that you shouldn't judge people because everyone is fighting a {hidden} battle.  I LOVE this quote, and I need reminded of it myself some days.  I have no idea what makes the clerk at the gas station grumpy, but she just might be fighting an invisible illness, caring for a dying relative, struggling to pay bills, or a myriad of other invisible battles.  I try to keep this in mind when I deal with difficult people.
•  I firmly believe that everything in life happens for a reason and as it's meant to be (Ecclesiastes 3:1)... although I often find that God alone knows that reason. This belief grounds me in much of my life, including diabetes, though I won't claim to know or understand what the purpose could be.   I do find the little things to be proof that there must be some sort of ultimate plan, though.  For example: what are the chances that we would build a house directly across the street from a family whose child was diagnosed two years after Rosie?  I believe that happened for a good reason, so that we can support each other. 

26. When someone is diagnosed I’d like to tell them:  You will never, ever control this beast 100%, so don't beat yourself up trying.

27. Something that has surprised me about living with an illness is:  The insensitive things people say... whether intentional or not. I've worked in health care for 16+ years, so I don't know why it still suprises me, but it does. I think I have a thinner skin with diabetes because it involves my child. 

28. The nicest thing someone did for me when I wasn’t feeling well was:  Take over d-care so I could sleep for hours on end. 

29. I’m involved with Invisible Illness Week because: A bunch of my favorite d-bloggers did this meme: Meri did it,, Reyna did it , Kerri did it, , and now I am doing it.

30. The fact that you read this list makes me feel:  Understood.  There's nothing better than feeling like you are not alone in fighting your particular battles in life!