Text to Movie - Type 1 Diabetes Edition

hospitals

Lack of blogging = Allie in hospital with severe DKA and other issues since Saturday. More later. I hope you are all well and happy. Smooch!

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4 Years Since D-Day { Allie, I Love You }

It's been four years since Allie was diagnosed with the auto-immune disease called type 1 diabetes.  This has been a rough year, with several trips to the hospital for DKA. 

I was just looking back through old posts about D and the one below brought back so many chilling memories; i can't belive we've made it this far.  It hasn't gotten any easier; i've only gotten a bit more numb.

http://crapstain.blogspot.com/2008/08/we-may-love-glucagon-but-we-love-emts.html

I still have days that make me hide in my closet and cry for Allie and all she goes through with this disease.  She didn't choose it.  She didn't cause it.  There's still no cure.  All we can do is move forward the best we can.  It's hard. 

I'm still in pieces...shattered and untied:

How to Age 7 Years Overnight

Have a teen daughter with type 1 diabetes who thinks she's invincible and lies directly at you when you ask, "Did you shoot for that {meal}?"  Have her continue for months and months, only giving a bit of insulin here and there...just enough to keep her alive and functioning, seemingly okay on the outside, all the while inside her body there is a battle raging, acid vs. base.  Have her body leach calcium from her bones to neutralize the acid in her blood caused by lack of insuilin, until finally the body says I GIVE!  And it can give no more.  Take her to the ER and then watch as she's hooked to IV's and later admitted to the hospital for 2 days.  Then find out that her bicarb was at 2 {should be over 20} and realize just how close a call this was. 

Then go home to get her some clean clothes and find things in her room you wish you hadn't.  Spend the day with social workers and counselors, then talk to residential treatment facilities.

Have your daughter hate you.  Yes, the one you've taken care of her whole life, the one you still take care of, the one you take shopping, the one you try to have a relationship with no matter how hard she tries to push you away.

Realize just how bad things are.

Then, after finding those 40 new wrinkles around your worried, tired eyes, stop.  Sit.  Be grateful for the small things, and that you're no longer surrounded by the judging, controlling eye and that you're free to FEEL and relate and EXPRESS and bitch and gripe if you want.

And count on things getting better.  They always do.

D-day Flashback

I don't know why, but i'm being haunted today by the memory of October 18, 2006.  It's pushing down on me, paining me, breaking my heart all over again.  I still remember the phone call from the doctor telling me the test results were positive (which was really, really negative, and not positive at all) and that i had to get Allie to the E.R. at Phoenix Children's Hospital.  I remember Allie, shorter than i then, standing across the kitchen bar from me, reading the expression on my face.  I remember when my eyes met hers and all i saw there was wonder.  I know in mine she saw fear.  I remember hanging up the phone and telling her she would have to pack a bag for a 3-day stay at the hospital.  I didn't know anything then.  Nothing.  My world still had color.  It drained quickly.

I remember calling Todd, my hand shaking as I dialed his number.  I remember telling him to come now RIGHT NOW because i couldn't drive.  I remember the drive to the hospital; my emotions circulating between fear and a blank void of non-feeling.  I couldn't process.

I remember being led directly to what would be our home--a shared room at PCH--for the next three days.  I remember Allie's blood sugar being tested--it was 399 (not bad for a new diagnosis and she owes that to her very high activity level). 

I remember her first shot of insulin--the mysterious substance that keeps her alive.

I remember bringing her home from the hospital, far more scared than i was the day i brought her home when she was born.

I remember the first time i tried to explain the difference between type 1 and type 2 diabetes to someone who refused to accept that type 1 is an auto-immune disease and can't be prevented or cured (yet).  These people still piss me off.

I don't know why i had a bad D-day today.  It's been a while.  That's progress, i suppose.

Fooling the Money Gods and More Adventures in Type 1 !#$%* Diabetes

Don't you hate it when you need a specific amount of money (let's say, to pay someone back) and you want it quickly (so it's not hanging over you) and you (and your hub) work your hoinkus off to get the money, but then along comes an unexpected bill (or several!) to take all the extra money right back outta your hands?  Or does that just happen to me?  Maybe the money gods like to see me frustrated.  Maybe this amuses them.  Maybe they are fat, hairy monkeys sitting in a palm tree dropping coconuts on my head and doing that weird monkey-scream laugh.  Damn monkey-assed money gods.

So, yes, one of those bills is my daughter's hospital bill.  I never did blog about that, huh?  Okay, so here's how it went down:

Thursday Chee (this is what I call her.  Well, it's one of the many names I call her) came home from school looking pale and pasty and just nasty.  I thought she was coming down with something.  I asked her how her sugar was.  "Fine" as always, she told me.  Next morning she says, "I think I need to go to the hospital."  I look at her...still pale, still pasty, lethargic. 

I ask her if she's been giving herself enough insulin.  Yes, she says.  She goes back to bed.  I trust her that her numbers are okay (why do I do that?). 

Later, a customer comes over for a photography consultation.   Toward the end of it, Allie comes out and sticks a ketostick in my face.  That's a urine stick that tells if and how much ketone she's spilling.  She was throwing large ketones.  NOT GOOD.  Emergency situation.  I tell her to go shoot some insulin and I finish up with my client. 

I go to Chee's room and ask what her sugar is.  She tells me 567 (or somewhere around there).  Large ketones plus huge number while taking insulin probably means insulin has gone bad AND IT'S OUR LAST VIAL.  I want to panic and throw up, but that's just not an option when your child is about to drop dead at your feet, so I call my bff, Amy, and ask if I can grab a vial of insulin from her (her son has type 1 diabetes, too).  She gives me her garage code and I grab insulin and race back home.  Allie injects and I call our endo.  Endo says to get to the E.R. 

With fresh insulin, I knew I could drive her.  An ambulance would've been faster, but I felt sure the insulin was good and she'd perk up in 15 minutes or so.

About half-way to the hospital, Chee started looking better.  Color came back to her face; life was returning.

Long story short:  she was admitted on Friday and released on Sunday.  She was hovering at the beginning stage of DKA (diabetic ketoacidosis, a life-threatening state for type 1's), meaning she had no insulin in her body.  Her insulin had indeed gone bad.   The endocrinology team met with her and adjusted her numbers and she talked her endo into ordering a new pump for her.  She will have an Omnipod in a couple weeks.  I hope and pray this will help her keep her numbers good.  I have my doubts, unfortunately. 

Type 1 diabetes, I continue to despise you.

Sincerely,

me.

Hospital Stay

Allie's been in the hospital since Friday.  She was going into DKA (no insulin in the body).  I had to sneak home tonight to try to sleep in my own bed, since the pull-out chair was killing me.  And now that I'm home, i can't sleep.  Al will be discharged tomorrow or Monday.  I'll write more then.

3 Years

Three years ago today I took my daughter for a three-day stay at Phoenix Children's Hospital where we learned to test her blood sugar, count carbs in meals, calculate insulin ratios, and draw up and inject my daughter with insulin every time she ate.

Three years ago today I learned what fear really is.

Three years ago today I fell apart and still don't have all the pieces.

Three years ago today I learned my kid is one of the most positive people I know.

Three years.

Type 1 diabetes: all we can do is continue to fight you. Someday we will win.

Dr. Faustman, I Love You! I Fall at Your Feet!

Forget my birthday! I declare today

Worship Dr. Faustman Day!


Phase 1 of her trial is underway to determine if the t.b. vaccine BCG can cure type 1 diabetes in humans and tests conducted so far has been successful!

Findings show that the human body can regenerate beta cells (the ones that produce insulin!) and that the T-lymphocyte cells which kill the beta cells can be safely destroyed!

A cure is on the way!

Allie will, within the next couple of years, be able to throw out all those needles and lancets and vials of insulin! I am confident in that!

http://www.massgeneral.org/diabetes/%5Claboratory_type1.htm

Dr. Faustman, you ROCK!

This is the best birthday present ever!

GelaSkins Inc.

Another Line of Hope?

Researches have found that 2 common Leukemia drugs can cure type 1 diabetes in mice. Todd called a few minutes ago to tell me he had just heard that on NPR.

I fell over myself trying to get to the computer to look it up. I found this article:

http://www.reuters.com/article/healthNews/idUSTRE4AG78H20081117

I read it, then cried. This is the third line of hope in the cure for type 1 diabetes that I am clinging to.

Given how bad Allie's A1c's have been in the past year, how sick she's been lately and how bad her vision has been, these little strings of hope are all I have to cling to. They force me to stay on my feet, to keep pushing forward, to keep climbing back up from the depression that hovers at my shoulder every time I see Allie drawing up a syringe of insulin to keep herself alive.

Thank you to all the researchers who continue to search for a cure. I love you all.


~~~~~~~~~~
GelaSkins Inc.

2 Years Ago Today

Two years ago today, Allie's pediatrician called with her lab results.

Two years ago today, Allie was admitted into Phoenix Children's Hospital where, for three days, we learned to keep her alive with insulin injections and glucose.

Two years ago today, our lives changed forever.

Two years ago today, I fell into a mild depression that still follows me around like a shadow.

Two years ago today, Allie had already accepted and come to terms with her condition.

She was only 12.

At 14, she still takes this disease in stride. She doesn't complain. She deals with it and goes on wtih her amazing life.

She is my hero.

I love you, Allie. Thank you for being strong when I couldn't. Thank you for continuing to do so.



~~
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A Friend Like That

A true-to-the-heart friend who GETS you and loves and accepts you despite all your various flaws and shortcomings is a treasure on Earth. You know, the one you can say ANYTHING to and she will understand it from your perspective. You will not have to spend hours trying to explain yourself. She already knows. And if she doesn't, she will fry her brain trying. And you know her the same way. It's a magic and precious bond.

I am a lucky girl, because I have a few of those. Let me tell you about one in particular, since Allie's 2-year anniversary of having type 1 diabetes is this Saturday and diabetes plays into this story.

(Insert waves or "diddly doo's" here)

It was an early Saturday morning in June 2007 as Todd and I headed out the door to walk to the park across the street from our house to take part in the Primary activity (our church's program for kids). Reaching the corner, we merged with more foot traffic: Amy, another Primary teacher and neighbor 2 blocks away who I recognized but didn't know well, and her kids.

As we stood watching the kids laughing and playing water games, a deep feeling came to me: I knew somehow in that moment that Amy was going to be a huge, monumental part of my life. It was almost like a revelation, it was so strong. I looked at her and pondered who this chick was and how she would come to be so integral to my life. I also thought my plan of not getting attached to anyone in this ward just might be foiled.

Let me note here that when I meet someone, or am getting to know someone, I have to reeeeally tone down my personality. I'm a total and complete nutball and am wide-open. To say that I can be misunderstood is a vast understatement. I know that I overwhelm some people. Some people can't handle me, and I'm totally okay with that. Not everyone has to like me or want to go along with my wild schemes. (Betsy, sorry I got us pulled over by the cops...twice. What? We were on rollerblades! That's all I'll say).

So when I got this knowledge that Amy and I were going to bond in some way, I thought, "Fantastic! I can skip the whole toned down, polite and respectful Sandi and get straight to the sarcasm and farting."

It was so freeing and refreshing! Amy, however, didn't seem to know quite how to take it. hehehe. Okay, so I still had to tone it down a bit.

Amy and I slowly got to know each other. I told her about Allie having type 1 diabetes and the stress and heartbreak that goes along with it. I told her about Todd and me, about this and that, and our friendship started to grow.

Then one day I got a phone call. It was Amy calling from the hospital. Her 10-year-old son, Caden, had developed type 1 diabetes. I cried, I cussed, I told her it would be okay, that I would help her get through this. I felt so blessed to be able to be there for her through this life-changing event.

Who would've known I would be the one to receive the bigger blessing?

Soon after their stay in the hospital, Amy and Caden returned home to a much altered life full of lancets, test strips, glucose meters, syringes, insulin, calculations and carb counting. To say the least, it is extremely overwhelming.

One night as I lay on the couch talking to Todd, there was a knock on the door. Todd got up to answer it and in whooshed a tearful and snotty Amy. She was in quite the state. I grabbed and hugged her, apologizing for my stinky pits. She snotted on my shoulder and apologized for that. That we could worry about manners in an apparent emergency makes me giggle now.

I asked what was wrong. I thought something terrible had happened to Caden.

Amy told me that a visiting family member had put butter and milk in the mashed potatoes and now Caden couldn't eat them because she couldn't count the carbs and she was upset because Caden loves mashed potatoes and she just wanted him to be able to eat some mashed potatoes!

People, let me tell you, I cried into a pot of beef stew someone had brought us when Allie got out of the hospital after her diagnosis. I couldn't count those carbs to save my life. The kind sister had put noodles AND potatoes and carrots in them and it fried my brain. Of course, both Amy and I can the carbs in anything you put in front of us now, but in the first days, it sucked butt.

So anyway, I smiled at Amy and told her it was okay. I wanted to giggle, and I might have (did I, Aimes?) and I reminded her of my beef stew story. My heart broke for her. Todd spoke up and assured Amy that I was a complete and utter mess for the first month after Allie's dx, and that Amy was doing was much better than I had (and that's the truth!). I had to cry along with Amy, because I could feel what she was feeling. There's a bond between type 1 moms, I tell you.

We looked up the carbs in the Calorie King book, Amy felt stupid (which she shouldn't have) and apologized for snotting on me (which also didn't warrant an apology). She went home and counted carbs, got right back up on the saddle and went on. She's a much stronger person than I am.

What was the bigger blessing I received? It is through our love and service to others that our own hearts are healed and our lives change for the better. We find our strength. Having someone to share not only the "normal, everyday" ups and downs of life, but someone who also understands the very complex emotional pain of having a child with type 1 diabetes, is a blessing beyond words. I believe Amy and I were drawn to this neighborhood for this reason: to lift one another up. She has held me up on many occasions. To the rest of the world, we're just two girlfriends out shopping and being silly. And we are. But, with a knowing smile, Amy and I understand that we go much deeper than that.

Amy, thanks for putting up with me; I know I can be a pain in the hoinkus. And Aimes, you can snot on me any time, day or night. That's what true-to-the-heart friends do for each other. They take the good with the bad, the difficult with the easy, the snot with the tears. It's all good.

I love you, Amy!


~~
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My First Russian Lesson (in years)!

Yesterday I went to my first Russian lesson since 1990 (wow, that's 18 years...longer than I thought!). My lesson was with a wonderful lady from Moscow named Emilia. She's funny and smart and very nice. I liked her so much!

Most of the lesson, Emilia spoke in Russian. I'm sure I had an intense look of concentration on my face. It was challenging to understand everything, but I got most of it. She told me funny stories and scary stories (like having contractions at the top of the Eiffel Tower!) and things about her life. She's very interesting and has been many places.

I came home with a test to take (I took it last night...it started easy, then got hard, then harder!), all in Russian, of course, and another worksheet to do.

I was actually physically exhausted after having my brain work so hard yesterday!

Russian is a difficult language, but very beautiful and mysterious. I'm so excited to be relearning it!

Allie's Halloween Habit

Allie has but one goal every year for Trick or Treating: to get more pieces of candy than the year prior. As you can imagine, it gets tougher every year.

Allie LOVES Halloween. She loves scary movies and stories, she loves costumes, parties, getting candy, decorating. You name it, if it's Halloweenish, Allie loves it!

Todd and I told her, when she was 11, that that would be her last year of trick or treating, since she'd really be too old to T-or-T after that. She cried. She's 14 and still Trick or Treats every year.

She even asked me if she could borrow Bryce and take HIM with HER when she really is too old to go on the candy expedition. Teehehe.

Here she is counting and categorizing her loot, circa 2006 (this was only about a week and a half after she was diagnosed with Type 1 Diabetes [which is an auto-immune disease and NOT caused by eating sugar!])

In the background is the pogo stick that I think saved her from DKA (Diabetic Keto Acidosis).

We May Love Glucagon But We Love EMTs More!

Is it really morning and did we really make it through the night? Was it all just a nightmare? Nope, I have the pictures to prove it. (And just so you know, I took the pix to lighten the mood. Allie was in the very capable hands of the emergency workers and she joked that at least she'd have something to blog about, so of course, I grabbed the camera).

Allie comes out from her room about 10 o'clock last night and is totally freaked out. She tells me she thinks she just accidentally took 30 units of Novolog instead of 30 units of Lantus (Lantus is a slow-acting insulin that lasts for 24 hours and Novolog is a fast-acting insulin taken with meals). My mind froze in time when she said that, just for a second or two. Then it quickly contemplated the enormity of that statement. 30 units of fast-acting insulin. Oops. Major oops. This was bound to be a repeat of L's extreme low I had just been part of Saturday morning. Or worse. Much worse.

In order for Allie to pretty much not die from this, we would have to feed her...are you ready for this? 420 carbs. How does a normal person eat 420 carbs in a meal, especially when they've had 3 meals today already? (Just as a comparison, Allie normally take 4-6 units of insulin per meal, on average). Well, Allie realized immediately that there was no way that was going to happen. She was shaking and crying and saying she didn't want to die. She told me to call 911. I obeyed immediately. In the meantime, she sucked down 4 Capri Suns while I called the doc. Doc said just keep feeding her and wait for the ambulance. I didn't think her stomach could hold enough; I kept the Glucagon kit in sight. I was so scared, but kept telling Allie everything would be totally okay.

The EMT's/paramedics arrived so quickly. I love and adore them (thank you, Rural Metro, Southwest Ambulance, and the Sheriff's Office! We love you!). They calmed us down by telling us that if necessary, they would put sugar directly into Allie's bloodstream. That relaxed me incredibly, but my brain could still not think properly. I'm usually good with this sort of thing, but 30 units of Novolog pushed me over the top. I knew we were in for a very long night. (Al finally went to sleep around 1, and I stayed up 'til 2 to continue checking her sugar, which dropped another 100 points by then, but then slowed way down. I got up at 6 to check again and of course, can't go back to sleep...another zombie day...fun.)

I really need to take a more careful stock of what's in our pantry at all times. The EMT's wanted me to get some protein in with her carbs and told me to put some peanut butter on the bagel I had given her. I rummaged in the pantry and the fridge, but no peanut butter, just almond butter which had been sitting for forever and needed stirring. As I struggled to get the almond butter to an edible consistency, I muttered, "Am I the only mom in America without peanut butter? Almond butter? What am I, a hippie?" The EMT's laughed. Laughing is good. If they could laugh, then everything was going to be okay.

Once we felt (and the EMT's felt) that we were out of danger, all the emergency workers left and Allie continued to eat. I lay on the couch and tried to wake myself up from this nightmare. I really thought I could for a minute or two. Then I realized this nightmare is our reality; it's our day-to-day life. It's Allie's reality for the rest of her life unless someone finds that cure.

Happy A1C Day!

Allie LOVES having her picture taken; can't you tell?

Today Al had her quarterly endo appointment. If you remember from her last one (in May) I was completely distraught because her A1C was dangerously high (it was 9.7--ouch!--and should be in the 7's or even better, the 6's, in order to avoid damage to her kidneys, eyes and heart. A little education: the A1C test measures the "average" blood glucose level over a 3-month period. It does that by measuring the amount of sugar stuck to a dead blood cell--they live about 3 months). Her A1C as of today is down to 8.2--a good drop from 9.7! We were happy, but will feel better when she gets it back down to the happy 7's.

Bad "D" Day

I am having a bad D day. I think it was sparked by Allie's dad telling me yesterday that she needed her insulin adjusted because she had been having some crazy lows. He asked me who I take her to to have the insulin adjusted. Answer: me. I adjust her insulin. But Allie seems to have taken care of it herself. She thinks her pancreas might be producing a little insulin because she'll be around 300 after a meal and not bolus much and be around 70 within a hour. She thinks it's because of the homeopathic remedy Dr. Gelburd gave her. Or maybe it's me who thought that. Which of course, sparked this painful little iota of hope in my heart that maybe that remedy is the cure. Maybe it's balancing her system out and those rogue beta-cell-killing white blood cells are going remiss and will rest and allow her beta cells to regenerate, to start producing insulin again.

I imagine--for just a hair's width of a second--life without needles, lancets, test strips, glucose meters, insulin bottles, cool packs, keytone strips, fear, worry, panic, dread....

Ah, to dream of having freedom and peace back. It's too painful to hope for; the let down too unbearable to deal with.

I

hate

diabetes.

It comes like a spy, like a sneak in the night and steals your good dreams.

It goes out in rippling waves of unbalanced chaos and wreaks havoc on the inside: the kidneys, the heart, the eyes, the tiny blood vessels. "You look so healthy, it can't be that serious." Ha! That's how the trickster gets you in the end. With a subtlety so practiced and perfect it's not recognizable to the untrained eye.

It follows you around all day, all night, every day. It doesn't give you a break. If you turn your head for a minute, it's there waiting to cheat you in yet another way or steal one more piece of your sanity.

I

hate

diabetes.

And now my rant is over. I am going to go eat something and feel guilty becuase I don't have to first: test my blood sugar, count the carbs, draw up the insulin, inject it, hope it turns out to be the right amount, suffer a blood sugar high or low if it wasn't.

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if i say it enough, it has to come true, right?

Yaay, Me!

Yes, I'm tooting my own horn. I was accepted a few days ago as a member of JDRF's ODST (Juvenile Diabetes Research Foundation's Online Diabetes Support Team)!!!! WHOO HOO! I'm so excited and nervous. The application process was a little nervous-making. I had to fill out an app, write a bio of why I think I know enough about type 1 diabetes to help the newly diagnosed, then answer sample questions. The questions were trickier than I thought they'd be and I literally bawled the entire time I spent answering them (about an hour and a half total). I wanted it to be JUST RIGHT, because I remember how it felt when Allie was first diagnosed. There is no way to describe it when your child's life (and your own) has been permanently and dangerously turned up-side-down. If I can help people through the extremely difficult and stressful time post-diagnosis, then my life means so much more.

Speaking of JDRF, we're approaching the annual Walk for a Cure! I will put Allie's team link up here soon so anyone who wants to donate can do so. Or you can join our team and help raise money. And you can walk with us on walk day out at Tempe Town Lake!

Please Pray for this Lady

You probably don't recognize her face and will probably never meet her, but please pray for her. Her name is Dr. Faustman and she is researching a cure for type 1 diabetes. Her work sounds really promising and couldn't come at better time. Please pray that her research and treatment will prove successful and be a safe and lasting cure for this horrible disease. I so long for the day when I can look back and say, "Wow, remember when Allie had diabetes and we had to worry about her all the time and she couldn't just eat without the whole rigmarole of glucose monitors, needles, insulin, pain, frustration...."

Allie got bad news at the endocrinologist's yesterday. I won't go into specifics, because I'm trying (oh so very hard) to keep a more positive alignment on this blog, but if you want to read more about Allie's struggles with type 1 diabetes, you can read my type 1 blog here: http://type1life.blogspot.com.

To read more about Dr. Faustman's research, go here:
http://www.massgeneral.org/diabetes/laboratory_type1.htm

...and please remember to pray!

Borscht recipe

This is an Americanized version, and oooooh so yummy! Don't be alarmed if things come out red the next day! ;o-)

Borscht!

1 lg. onion, chopped
2-3 stalks celery, chopped
1 T. olive oil
3-4 potatoes, cubed
3-4 carrots, sliced
4-6 c. chicken stock (or veggie stock, or even beef stock for a more trad. version)
3-4 lg. beets, shredded (food processor makes it much easier)
2 T. apple cider vinegar
1/2 t. salt, plus an extra pinch
dash of pepper
sour cream

Saute onion and celery in oil in 5-qt. saucepan until soft. Add potatoes, carrots and stock to cover. Bring to boil; reduce heat. Simmer for 15 minutes or 'til veggies are tender. Add beets. Cook for 15 minutes longer. Add vinegar and seasonings. Cook for 1 minute longer. Garnish with sour cream.

Carb count is 31 g. minus 5 g. fiber for all the peeps with diabetes, type 1 or 2 or beyond. Enjoy!