Here Come the Ketones

Right now, as I type, Maddie, the cat is gathering more and more candy from our Fall Festival.  She and her 2 brothers, Batman and Superman will bring home their 12 pound stashes, and momentarily, we will forget that we have diabetes.

There will be candy and empty wrappers all over the living room floor soon, and I will not be stealth enough to know or see who eats what.

Soooooo, this is going to be a long night of checking, rechecking, and checking blood sugar again, and maybe we'll even get a little ketone action in there.  That's always fun for me.  Maddie usually gets more urine on my hands than on the stick.  Good times, good times.... 

*Sigh* Halloween.......Can't live with it, CAN live without it......

I'm Starving!!

If you have read my post about homeschooling Maddie, you'll know that I do enjoy eating my words.  Today I was starving!

This time instead of being about homeschooling, it is about insurance, since ironically that was the frustrating topic of my last post.

My husband came home from work a month or two ago and announced that they were getting new insurance at his job.  That always makes me cringe because I'm always fearful that someone somewhere is going to deny Maddie coverage, even though I know that they can't do that on a group plan.  I also cringe because the amount we pay per month for our family to have insurance, (even though Shawn is free) is almost like another house payment.

Today was the first time I went to get Maddie's testing strips since our new insurance went into effect.  They used to cost us $70, just for that one prescription, just for that one month.  Today, I found out that our prescription co-pay is not $70 anymore, it's $10!!  This is where I started eating my words, once again.

This was the conversation in the pharmacy drive-thru between myself and the pharmacist.

"That will be $10."

"WHAAAAAAT?"  This is the part where I had to physically pick up my lower jaw and put it back into place.
 
"I said, that will be $10 for your daughter's testing strips."  She was not nearly as excited as I was at that point. 

"Nuh-uh!"

"Uh-huh."

"No way!"

"Um, yes way, ma'am."

"You're kidding me, right?"

"No, ma'am, I'm not kidding."

"OH.......MY.........GOODNESS......she just said it would be $10," I sometimes yell at my steering wheel.

The poor pharmacist had been hunched over at the microphone for several minutes waiting for me to get my act together, and my kids were scared, silent and wide-eyed in the back of the van watching my entire "freak-out" episode.

"Ma'am, I have customers waiting inside the store.  Are you going to pay for this today?"

See, for this pharmacist, it was just an everyday, run of the mill, prescription refill.  But for me, it was an answer to prayer in a desperate time of need.

.....The prayer of a righteous man is powerful and effective.  James 5:16 

Insurance?

I don't really understand all that is going on with this universal healthcare stuff.  I just want to vent my frustrations  for a minute or two.

Insurance is not for the sick.  It is only for the well.  When you're well, you don't shell out much money for doctor's visits and prescriptions.  You may pay an arm and a leg for your monthly premium, but that's about it.

Then there are those of us that are "sick".  We are the punishable ones.  We pay the arm, the leg, and part of the other arm for coverage for our family.  Then we have to see a specialist every other month.  That's another sky-high fee.  Then we have tons of prescriptions.  We do have co-pays for prescriptions, but it seems that each year, that fee doubles.  Multiply that co-pay by 4, and that is only part of our monthly prescription cost--it's the part that comes from the drug store pharmacy.  Then there's the crazy co-pay amounts that go to the pump company for pump supplies.  And oh yeah, they only covered 1/8 of the cost of the pump.  

That's not to mentions the Continuous Glucose Monitor that Maddie desperately needs, but guess what?  Yep, that's right.  It's not covered.  Oh well....too bad....

Ahhh....I feel much better now.  I just needed to vent a little.

Bottom line:  Some people have fancy cars, or beautiful houses, or brand new trendy clothes.  Some people go on trips to exotic places, or go to the beach every weekend.

BUT, we have an income (it's very small, but it's there--I promise) and we have insurance coverage, and a healthy child with an insulin pump.  I'll take that over shopping sprees any day!

Reply

I just wanted to write a quick post to reply to a comment that someone made on one of my older posts.  I don't know the commentor, but I am very glad that she found my blog and read it.  That really means a lot to me.  The more we know about the stuggles people have with diabetes, the closer we'll be to finding a cure.

I think she misunderstood the title of my blog, which is "A Beautiful Diabetic".  She wrote:   

"It is sad that you identify your daughter as diabetic.
It should be....My Beautiful daughter is Maddie. She is 9 and she's smart, talented, full of life, and hilarious, all rolled up into one precious little body. o yeah she is diabetic.
Diabetic is not who she is."

You're right--a diabetic is not who she is.  And just so you know, I don't really 'identify' her as diabetic.  The reason I called my blog "A Beautiful Diabetic" is because I want people to know about this disease, and how it affects children and families on a realistic daily basis.

I could have called it ":My Beautiful Maddie" and that would have been a wonderful title, but for me, I want to reach out to that one mother, who sits in despair at her computer, googling diabetes because her child was just diagnosed.  I want her to know that my diabetic child lives a normal, fun-filled, yet sometimes treacherous life.  This disease is a fight that we are going to win, and that is the point of my blog.

Another reason for writing my blog, mostly about diabetes, is because there is a huge community out there of families with children who have the disease.  Personally, I value those other moms who have that in common with me, and who also have blogs about their diabetic kids.  I look to them for support, and questions when necessary.

But, thank you, friend, for caring enough to leave a comment on my blog.  I sincerely appreciate your input.  But don't be sad~  I don't identify Maddie as a diabetic.  It's just a creative title that is intended to catch the eye of someone who is struggling with the same thing. 

Lisa's Images -- Lisa Prevatte

I have a sweet girlfriend that is an awesome photographer.  Her name is Lisa Prevatte of Lisa's Images.  If you'd like her number, just let me know--she's in the High Point area.  She does great wedding pictures, too.  I asked her to get some good pictures of Maddie since she won't be getting school pictures this year.  I am SO glad I did!!  They turned out great, and we're going to do more!!  I can't wait~

 

 

 

October 2009 ~ 9 Years Old

Oprah

I am not an Oprah fan, I don't agree with most of her points of view concerning faith and God, nor do I make it a point to watch her show.  I do, however, think that sometimes she has some really good topics on her show that are very informative to us as women and mothers, but also some good health information.

A couple of weeks ago, I saw a preview for a show about a family with a schizophrenic child.  I was going to be sure to watch this one!!  I think a lot of times we think, "Oh, whoa is me...." and we think we have big problems.  This particular show really put it in perspective for me.

Janny is a pretty little girl, with beautiful curly blond hair, around 8 or 9 years old, (Maddie's age).  She  started showing signs of hallucinations at around 6 months of age.  As she got older, she got worse, and her condition progressed into schizophrenia, which is very rare in children.  Now she has what seems like imaginary friends, but is really other personalities that talk to her and tell her to do bad things, and she stays angry most of the time, if not constantly violent.  At the age of 5, Janny was asking her parents things like how to break your neck, or what it the easiest way to die.    

But here is where I realized that maybe having a diabetic child isn't as bad as having a child with another disability, like say, a mental disability such as this one: 

Janny's mom is a stay at home mom, and her dad is an English professor at a local college.  They also have a son that is under 2 years old.  The family lives in an apartment complex.  Janny has one apartment, and the baby brother has another apartment.  They can't live in the same house, or even be around each other, for fear that Janny will kill her brother.  Janny can't have sharp objects or any cleaning solutions in her apartment, for fear of hurting herself.  One parent sleeps with the baby brother in his apartment one night, while the other monitors Janny as she sleeps, then they take turns the next night.  All day long, Janny is monitored, while someone else stays with the brother.  The only friend she has is a little girl she met in the mental hospital who suffers from paranoid schizophrenia.  The two girls seem to understand each other, and that is what they have in common. 

This story just made me sad, and although I loath it, and diabetes does affect Maddie emotionally and sometimes behaviorally, I sometimes don't realize how lucky I am to have a child with diabetes.

H1N1 Drama

Here is our Swine Flu time line.  Fortunately, Maddie has not caught it, but hopefully she will not catch it in the future.  I know there is so much drama about any kind of flu shot, or the lack thereof, but this time, I'm a little nervous about it.

August:  Maddie's endocrinologist informs me that she MUST have the H1N1 flu shot.  He also says that it is a "good idea" for the rest of us to get it, since we live in the same home and are her caretakers.

September:  Drama about the H1N1 virus in the media, cases all around NC, and some cases in our school and church, and amongst our friends.  Scientists are furiously working on the vaccine.

October 1:  Vaccine is complete. Ready to be shipped to all health care providers.  The media announces that they are taking all precautions to NOT have a shortage, and are making sure all who need it will get it.

October 5:  In for my 5 year old son's check up, I inquired about the H1N1 vaccine for my "chronically ill child" at the front desk.  I was told that they would receive it at the END of October or BEGINNING of November, and to call around that time and they would put her on a waiting list, but that she would indeed receive it because of her illness.  I also asked the doctor, and was told the same thing--she would definitely get the shot.

October 21, 2:00 p.m.:  Upon entering the office for Maddie's 9 year old check up, I noticed a sign that said "Sorry, we are out of the H1N1 vaccines.  All County Health Departments are out, also."  Surely they don't mean they are completely out because we weren't notified, or put on a list, and Maddie HAS to get one, as do all children with chronic illnesses.

October 21, 2:30 p.m.:  I asked the nurse about Maddie's need for, and her endochrinologist's demand for, her to get the vaccine.  In the same breath, I told her what I had been told at the beginning of the month, and since it wasn't the END of October, I hadn't called.  The nurse's response was, "Sorry~we only got 100 vaccines yesterday and we ran out this morning at 10:00 a.m.  I don't know why you weren't called or notified."  When I asked the doctor the same question, and added, "Why weren't we notified?"  I didn't really get a clear answer.  She just told me to see if the endochrinologist could give Maddie the shot.

Wouldn't he have told me he could give her the vaccine when he first suggested that she get it?

Something doesn't add up......

My New Title

Today I got a new title.  I am now the WORST MOM EVER.

I've never claimed to be "Mother of the Year".  Yes, sometimes my kids go outside without jackets when it's cool.  And yes, I've unexpectedly noticed Maddie wearing flip-flops in the winter.  And, yes, there have been mornings when the kids go out the door without brushing their teeth.  And yes, I've been known to pick up 3 happy meals so as to not have to get out all the stuff for PB&J's.  I have arrived at church only to realize that someone wasn't wearing pants.  I do rush out the door some mornings forgetting to feed breakfast to at least one person.  Yeah, so?  Don't we all have those moments that are monumental at the time, but 15 years from now, we'll laugh about?

I don't claim to be one of those super moms who has it all together, with everyone looking immaculately clean, with brand new expensive clothes on, and every hair in place.  In fact I'm quite the opposite.  I don't know how many times I've gotten to wherever it was that I was going only to realize that no one (including myself) had brushed their hair.  I have taken my kids into Wal-Mart and thrown them in the buggy because I couldn't find one of their shoes as I was walking out the door.  "Too bad--you can ride in the buggy with the toilet paper and diapers.  Next time, don't lose your shoes!"   

But one thing that I am absolutely not, is a BAD mom.  I am also not an IRRESPONSIBLE mom.  I also think that I know quite a bit on how to take care of my chronically ill child.  Not today, though.  Today, I'm the worst mom ever..... 

It was Maddie's 9-year old check up, and I expected it to be a normal, non-eventful visit.  When they called her name, the nurse checked her height, weight, vision, and hearing, then sat her down to prick her finger.  After all of that, we presented the nurse with a fresh cup of warm morning urine, that had been sloshing around in my purse all day (of course, the cap was screwed on tight, and it was in a ziplock baggie).

Now, I am very aware of Maddie's A1C, aware of her ketones, and aware that they would find sugar in her urine, typical of a diabetic.  My first mistake was watching the nurse check her ketones.

"She doesn't have ketones, does she?"  On the ketone scale, "Trace" and "Small" are just signs that Maddie needed to drink water this morning, and that her blood sugar may have been a little high when she woke up.      
"She's right between "Trace" and "Small", but that's no big deal."  Actually, for anyone else, it is a big deal, but for Maddie, I know what it means, because I've been there and done that, and I can tell you what it means in my sleep. 

From across the crowded hallway, I hear a low and stern voice bellow out, "Trace to small? Is there sugar in her urine?"  This was one of the doctors that I was NOT seeing that day.  It's also a doctor that doesn't know me and doesn't know Maddie.

Stunned, the nurse looked up and hesitated to tell him that there was sugar in her urine.  I'm not sure what the number means exactly, but by the look on her face, I knew I was going to get flack about it.  I just didn't realize I was going to get flack about it from a man I had never met, nor had ever looked at my daughter's chart.

He walked over to Maddie and put his hand on her shoulder and told her that she needed to drink more water, and try to keep her blood sugar down.  **SARCASM ALERT**  Oh, really?  Is that what she's supposed to do??  Good, because no one had ever mentioned that to us before!!

He then started questioning ME in the hallway outside of HIS patient's room and in front of a whole bunch of nurses and patients.  "What's her A1C?  What have her blood sugars been like? How much insulin is she getting per day?" and on, and on, and on, and on......

**SORRY--ANOTHER SARCASM ALERT**

Oh, how did I get from the pediatrician's office for a regular annual check up, to the endochrinologist's office for a lab visit?  And how did our usual sweet, quiet and FEMALE doctor turn into a humiliating MALE pediatrician/endocrinologist before my very eyes??

His last statement to me was with his finger pointed at my face.  "You need to get that blood sugar under control, and fast!"  Then as quickly as he stepped into my conversation with the nurse, he stepped into his next patient's examination room.  And he was gone.

After the nurse rolled her eyes and told me that she didn't know what his problem was, she took me and Maddie into our examination room.  What she apparently didn't realize from that confrontational conversation is that with that little finger point, he was giving me my new title. "WORST MOM EVER"

My Special Birthday Girl

It was 9 years ago today that I had my sweet Maddie Belle.  I love her more than I could ever imagine.  No one can ever explain the love a mother has for her child.  Maddie, you are more beautiful, more sweet, more creative, funnier, and smarter than I could ever imagine.  Your Mama loves you, pretty girl.  You ARE my heart.

Germs, Stools, and Flu Shots

Today was Reilly's 5 year-old check up.  No biggie, right?  Oh, it was a biggie.  Having Maddie around all the time means she gets the privilege of accompanying me everywhere I go.  Being that Brendan is 2, he also gets to enjoy that privilege.  My mom has the privelege of being able to help me out when I need it, and today, I needed it.

It was a perfect plan in my head.  Pick up Reilly at 12, get the kids lunch, eat in the car, meet my mom at the doctor's office, Mom, Maddie and Brendan watch a movie in the car with the windows down (it was a beautiful day) while Reilly and I run in and see the doctor.

At about 11:55, as I was on my way to the school, my phone rings.  It was Shawn telling me to see if I could get Maddie and Brendan in to get flu shots while I was at the doctor's office, so we wouldn't have to make 2 trips.  Yeah, easy for him to say--he was sitting in a quiet room with a bunch of well behaved teenagers who were not angst ridden about getting shots in their arms.  So, I agreed, called the doctor's office to see if I was able to do it, and hence began the whining and complaining.  The nurse said that they didn't get the nasal mist this year.  Just the shots.  That's just great. 

I have to admit, I'm a worrier.  I also have severe anxiety when it comes to knowing I'm going to endure something painful or uncomfortable.  For instance, I find it almost impossible to get a glaucoma test.  I can't stick my head in a contraption knowing good and well that this contraption is going to blow air on my eye balls.  I just can't do it.  If I keep my head in it, then I inevitably close my eyes at the exact moment the air puff blows.  It's the suspence of knowing that it's going to happen.  I also can't stand the eye ball numbing drops.  Because I know that I can't feel my eye balls, and that bothers me.  But, alas, I can endure a flu shot.  So, Maddie has this worry/anxiety thing that she picked up from her mother.  I just choose to worry about more important things, like puffs of air....

Anyhoo, for the next hour and a half, I had to listen to things like, "Do they have to give the shot to me?" and "You're going to have to pay money for me to get the shot, and I don't want you spending your money on me." and "I just really feel like I'm not going to get the flu, so can I just skip the shot?"  All of this coming from the person who has taken thousands of shots, thousands of finger pricks, and hundreds of needles and tiny tubes in her back side. 

Normally I'm not a germ-o-phobe, but the swine flu scare has sent me into sort of a panic because it could be much more dangerous for a child with a chronic illness, than an otherwise healthy child.  I spent the 15 minutes in the waiting room with Reilly applying the provided hand sanitizer and kindly reminding him not to touch anything or put his hands near his face.

Everything was going smoothly until they called Reilly's name to "come on back" and told me that the other 2 kids should come back, too.  It wasn't going to take long for his check up, then they would all get the shots.  The nurse took Reilly to weigh him, and I ran out to the car to get Mom, Maddie and Brendan.  I could tell it wasn't going to be pretty when Maddie walked down the hall with tears in her eyes.

All 5 of us get escorted into a tiny and very warm examination room.  As usual, immediately 3 things start to happen simultaneously.  Reilly, who is sitting on the table in his Spiderman boxer briefs, starts talking about something, in which to demonstrate meant he had to put his entire hands in his mouth, and when asked not to do that, immediately rubs his eyes with the previous saliva/germ covered hands.  Maddie is quietly crying in anticipation on the floor, with her blood sugar soaring by this point.  Brendan is running full speed back and forth in this 5x8 square foot room, in which there are 2 chairs, a stool, a desk, the paper covered examination table, and five people.

So being the worn out and frazzled mother that I am, I first asked him to stop (knowing full and well that he wouldn't have any part of that) then I put him in "time out" which consisted of the high stool that I knew he couldn't get down from.  Now at this point I am sweating, both from the heat of the room, and from the disposition of all 3 of my kids.  The sweet nurse sticks her head into our room and says, "I'm just putting the SIX  NEEDLES for the kids' SHOTS in the bin on the door.  I didn't want you to think someone was knocking on the door."  Yeah, thanks.  Way to bring it up.  Now everyone has a precise mental picture. 

You can always tell when the doctor is about to come into your room because you can hear the papers being shifted around as they look through your chart really quickly to know what's going on with you.  As I heard Reilly's papers being shifted, the door knob was turning, and I look over at Brendan and he is in mid air.  He lands on his head with the loudest "bonk" sound that you can imagine.  He didn't land on the side of his head, or his shoulder and head.  He landed flat on the back of his head.  And right as the doctor was opening the door.

So now I have 2 crying kids, and 1 in his underwear, and we haven't even started the check up yet.  A few minutes later, Brendan stops crying only to have a noticable goose egg on his head, but Maddie was still in a fetal position crying, this time on my Mom's lap.  I'm never in the right state of mind to ask questions of the doctor at my kids' check ups.  I'm always trying to keep people from crying, and I'm always sweating from the stress of having a doctor talk to me about my child, but not really listening because someone is inevitably acting up.

When it was shot time, Maddie went first, and started hyperventalating.  When the doctor got her calmed down, she gave her the shot.  It was somewhat remeniscent of the first time I gave Maddie a shot of insulin, but not quite as ear-piercing.  Of course, she looked right at the needle and started screaming, not to cease for probably a minute or two.  Fortunately, my mom had a good grip on her.  I had visions of the letters "HI" on her meter.  Stress and anxiety causes her blood sugar to go sky high, and this was definitely stress and anxiety for her, and for me. 

Unfortunately, Reilly received his kindergarten shots, so he got 4 shots instead of 1.  I heard him say things that I hadn't ever heard him say before.  "Get me away from her!" and "This has got to stop now!" and "I can't believe you're letting her do this to me!"  It was quite unsettling for me.  The worst part is having to hold them down so they can't move, except for turning their heads to see the 4 inch long needles.

Then it was Brendan's turn.  He was sleepy, and sweaty, and had a huge bump on his head.  I set him up on the table and she gave him his flu shot.  He didn't wince, he didn't cry, and he didn't even change his sweet expression from a blank look.  He just sat there and got his shot, and watched the whole time.  I think God gave me him to help my calm my anxious nerves and give me a periodic breath of fresh air in my stress filled life.

When we got out to the car, Maddie checked her blood and she was in the 500's.  That figures.....but at least she won't get the flu!