Monday, June 29, 2009
Friday, June 26, 2009
Wednesday, June 24, 2009
Although class is only 1 1/2 hours maximum, many times there will be a snack given, a special treat. Well, since this was promotion Sunday, of course there was cake to celebrate! Why wouldn't there be? Anyway, I hadn't remembered that the kids would be switching classrooms and so there was no plan in place.
When I went to gather the kids after service time, I walked up to C's new room, kind of gasped inside my head when I realized we hadn't even mentioned anything about diabetes to the new teacher. I could see C inside the window putting her meter in her bag. She smiled at me and came to the door. I could also see a few pieces of sheet cake sitting on a table as she exited the door. I pulled her aside and asked if she had had some cake. One of her little friends popped her head out the door. With a smile she said "Oh, yes, C checked herself and I helped her and we had cake!"
I guess the look in my eyes signaled trouble to C and her eyes filled with tears. "Honey, I'm not mad at you," I said. "I just need to know how much you ate and what you put in the pump." After she calmed down, I took a look at the pump history and saw her BG number and the carbs she had estimated for the piece of cake. She actually put in 25 grams...exactly what I would have guessed! I suppose it just shocked me that she had done all of it on her own...well, with her friend's help :o). I hugged C and told her how proud I was of her.
I said "Mommy just needs to know about these things. I love you soooo much and I want to make sure everything is entered right so you stay feeling great. Okay, sweetheart?"
We'll have a better plan in place next Sunday. I'll begin by meeting the teacher!
Monday, June 22, 2009
- packed way-lots of diabetes stuff...in two bags...carried on (you never know when a slippery insulin bottle will fall onto a hard tile floor!)
- asked for a sharps container from our hotel's front desk
- ordered groceries delivered to our room from local market (case of water...saved us lots $)
- ate most breakfasts in room (cereal & fruit = easy carb-counting for at least one meal per day)
- carried water, snacks and Crystal Light into parks
- tested blood sugar often
- did lots of homework to plan must-sees in each park
- had a ton of fun!!
...positive stress, perhaps?
...so little time!
Animal Kingdom - unexpectedly my favorite park.
The Magic Kingdom
Hollywood Studios...fun, even in the rain!
Wednesday, June 17, 2009
For some unknown reason, I have been thinking a lot about my childhood. What it was like. The feelings and emotions about certain situations I experienced. Maybe it's because summer is upon us...and my kids are driving me mad with expectations (swimming, beach, Raging Waters, sleep-overs, camping trips, movies, you name it).
Here are some things I wish I knew when I was a kid. I hope my kids will learn them.
- It's okay to have "nothing" to do. Soon, you will have too much to do. So enjoy it.
- Sometimes friendship is found in the least expected places.
- Mom says "no" to some things for your own good.
- In swimming, when your head is in the water, that's the best time to exhale.
- Sleep really is healthy for you.
- Sometimes, speaking up for yourself produces great results.
- Forgiveness releases you from misery's clutch.
- You should always hold the door for the person behind you.
- Sunscreen is a habit worth forming.
- Money has no expiration date. It's okay to save it.
Friday, June 12, 2009
I had such a terrible time with our "mail-order" pharmacy, that for the past year and half, I've gone back to picking up prescriptions at CVS on a monthly basis. I really need to figure the "mail order" thing out again because it could save us tons of dough. But whatever...for now.
When the most recent shipment arrived, I decided to have a still-life photo shoot. In the hustle and bustle of life, I usually throw open the cupboard and stack it all up. But, I wanted to set out a 1 month supply of everything, just to take a look...and to ponder a bit.
This is what I included:
- insulin, 2 bottles of Novolog
- insulin, 1 bottle of Lantus for times of pump failure
- alcohol wipes
- IV prep wipes
- a box of AAA batteries
- 300 lancets
- 300 test strips
- 10 infusion sets
- 10 reservoirs
- 2 glucagon kits
Items I did not include, but should have:
- glucose tablets
- "quick-sert" device
- syringes for times of pump failure
I could have gotten really crazy here and set out juice boxes, frosting tubes, countless snacks, but I didn't. However, there are so many times in a month that C will need to take and eat either fast-acting sugar...reason for frosting tubes :)...or take extra carbs to keep her number up, that normally a little 7 year old girl would not. I could have included her meter kit and the actual pump (my pump gear, included!), although I stuck with just consumable items.
As I look at the above image, there are lots of things that run through my mind. I remember a time when all of this would have looked foreign to me. It seems a lifetime ago...my daughter's lifetime. I remember becoming a raging, sleepless mother in our neighborhood CVS (Sav-On back then) at the time of C's diagnosis. I could not get our insurance company to accept the fact that we really did need 300 test strips per month and the CVS pharmacy receptionists got the brunt of my "mama bear-ness." I remember coming extremely close to having no usable reservoirs because several were defective. I remember driving out to Minimed's home in Chatsworth, California, because C was using the very last infusion set we had. I remember when the insurance company decided that each supply would go up $50 each, without notice (but that's for another post!)
Wow. It's a lot of extra stuff. Stuff that a kid shouldn't have to know about. And I guess that's part of the reason for this post. It's summertime. And I want my kids to have fun. When C looks back on her childhood, I really don't want it to include all this stuff. But, honestly, I know that it will. I am hopeful, though, that her memories of summer days will outweigh the memories of all our diabetes menagerie.
Hospital. Education. Prayer. Sleepless nights. I remember being discharged from the hospital on a Friday. We had to be on our own until Monday morning when we were set to be at CHLA (Childrens Hospital Los Angeles), where the doctor assured us that we’d be taken care of. But we had to get to Monday. I was so scared. Injections? All on our own? I had dropped out of the nursing program in college because of this. The perfect irony.
I used the doctor’s cell phone number several times that weekend. But we did get to Monday. There we were at CHLA, learning soooo much. My head ached. We were given a gigantic notebook full of diabetes stuff – carbohydrate counting, scheduling, the different insulins, injection sites, etc.. And, that’s when we first met those wonderful people at CHLA…Dr. K and the dear, sweet nurses. How we clutched to them for our daughter's very life.
So, now, it was us, close family and friends, the CHLA nurses and Dr. K...our diabetes community. It was scary. It was lonely. Because, really, when we came home, and we weren't on the phone with the nurses, and Dan went back to work, and the boys were in school...it was just us...C & me.
Family and friends surrounded our little family with meals and help with the boys. But when it came to the diabetes stuff…I was it. I remember thinking “I did not sign up for this.” But as you all know, the job was mine, applied for or not.
On the phone with nurses constantly...I can still hear their calming voices, helping me to gather my senses enough at 3 in the morning to measure and give an injection of 1/8 of a unit of insulin to my baby.
During one of those first weeks after diagnosis, I had to get my wits about me in order to pick up my oldest (then, in 1st grade). As I wheeled C’s stroller past the classrooms, someone came walking right up to me...gave me the biggest hug with tears in her eyes. “My name is K, and I know exactly what you're going through.” She handed me a bag, over-flowing with goodies for C...cute band-aids, Crystal Light mix, small bags of snacks (clearly marked with carb counts), stickers, small toys, a wonderful purple teddy bear...and her phone number. She said “diabetes is so difficult. Call me whenever you want.” Come to find out, her daughter was a second grader that year and had been diagnosed when she was just 3 years old.
So...now it was us, friends & family, CHLA staff, and now...K & her family. I can't tell you what a comforting thing it was to hear her say that diabetes is terrible...it's so difficult. In a strange way, that eased the burden slightly. Because, finally, someone else felt it too. I wasn't alone. To this day, when someone tells me something like "Oh diabetes?...Well, at least it's manageable." Oooooh...I just want to scream! It’s hard, people! And, no, sometimes it’s not manageable at all.
Well, time has passed. It’s been over five years of learning, failing, trying… In those five years, we have met 3 other families in our immediate city with type 1. I have passed on the goodie bag to another family I heard about through a friend. We’ve met a newly diagnosed toddler and family at a neighborhood park to talk to and encourage in all this crazy stuff. We’ve been welcomed with open arms to a JDRF walk team and have joined them for the last 3 years. We’ve spent time at Family Camps through CHLA talking with dozens of other families with stories so similar to ours.
So…now it was us, friends & family, CHLA staff, K & her family, 3 other families, our walk team and…
Enter the DOC.
Like the #1 post stated, I’ve been a lurker for years now. It started with searches about diabetes, the pump, a 504 plan, etc. And then, I came across a blog about real life with type 1 diabetes. This was a young woman’s life, out there, nearly every day for me to peer into, and learn, and laugh. Her writing encouraged me so much. Here was this lady, living a full and eventful life…with diabetes. Her writing was so rich, so vibrant, so full of humor! What hope I found at her site, sixuntilme.
Kerri’s blog pointed me to others. I couldn’t believe the wealth of diabetes knowledge I found…not from medical people, per se, but patients themselves. These were real people living wonderful lives, despite diabetes.
So…now it was us, friends & family, CHLA staff, K & her family, 3 other families, our walk team and “just the tip” of the DOC.
And, then there's Twitter! Another extension of the DOC...supportive, inviting and encouraging. And I haven’t yet mentioned sites like tudiabetes and type1parents. There are some great things growing out there. I have been truly touched by this community. Support is just one mouse click away.
Thank you DOC! Keep doing what you’re doing! And, thank you, Gina, for the privelege of posting here!
You can find us on Twitter (@mypumpgear); on Facebook ; on our blog; or on our site mypumpgear.com
Wednesday, June 10, 2009
I was asked just recently about the early days of C's diagnosis. No warm, fuzzy memories. Fear, consumption, the unknown...that's what comes to mind. But, here's a memory that I can look back on, and if not laugh at, at least rustle up a little chuckle.
It was in the very first days at home after the hospital stay and after we got "all educated" on this crazy new way of life. It has to do with the counting of carbohydrates. Now, this is, for me, one of the great annoyances of this disease. No longer can we just put a bowl of chips out for all to munch from, but we need to count each one and know exactly what our little 2 year old (at the time) would be eating. Talk about irritating. But all you parents out there who go through this, day in and day out, can certainly relate. Well...I wonder if you can relate to my inner monster that slipped right out of me as I wrestled with this new routine. (If you can relate, I'd love to know...so I won't feel so alone in this area!)
Anyway...we were having Frito Corn Chips...nothing abnormal about that. But I was still learning about carb-counting and nutrition guides and grams and so on. I turned the bag over, and for the life of me, could not figure out what the guide was telling me. Half of this confusion was due to the new-ness of diabetes. But the other half stemmed from the tremedous lack of sleep I was experiencing.
“Yes. Hello. I have some questions regarding the nutrition guide on a bag of Fritos.”
“Yes ma’am. What seems to be the problem?” (Grrrr at the word “ma’am”)
“Well, I’m confused about the grams. At the top of the guide, it says a serving size is one ounce at 28 grams for 32 chips.”
“Yes, ma’am, that’s correct.”
“But then down at the Total Carbohydrates it says 15 grams.”
“Yyyyes, that’s correct.” His tone was beginning to sound patronizing.
“Okay. But I don’t understand. 28 or 15…which is it?” My voice began to quiver.
“Ma’am, I can see that this issue is very important to you, but I can assure you that the information on the nutrition guide is correct.”
I began to sweat. In the background, C was beginning to fuss.
“Okay…You don’t understand!” My voice started rising and my eyes were filling with tears. Then, I let it all go.
“I don’t know what to do! My baby! She wants fritos and I don’t know what to do! Is it 15 grams or 28?! I need to give her a shot! I don’t understand this! She’s diabetic and I don’t know what to do!” By this time, I'm sobbing.
“Okay, ma’am? Calm down, please calm down?”
Sniff, sniff, “yes,” I squeeked.
“Okay, ma’am, you hold on and I’ll go ask someone about all this. Now, hold on, okay?”
I sat there, head down over the high chair tray, holding the fritos bag. C was content playing with my hair. As I grabbed a tissue and blew, a voice came back on the phone.
“I’m now understanding a bit more clearly about what you’re asking. You need to focus on the 15 grams of carbohydrates. The serving size of one ounce is about 32 chips and it should weigh 28 grams…that’s the weight. One of my co-workers, here, knows a little bit about diabetes and explained it to me. I hope this helps.” There was no patronizing tone now.
Big breath…”Yes…yes. Thank you.”
“Well, thank you for calling Frito-Lay. And if there’s anything else we can help you with, please call again.” Click.
I’m a grown woman. College-educated. Masters degree even. Obviously, I wasn’t thinking clearly. There I sat. I slowly counted out 32 chips for my daughter. As she happily munched away on them, I prepared her injection.
(Sorry Mr. Frito-Lay. I didn’t mean to get all freaky on you.)
Monday, June 8, 2009
How best to introduce myself? My name is Nan. I am 44 and not ashamed of that. I have earned every single wrinkle that I have. But gray hair? I have an appointment to see my hair lady next week.
In short I am a: Christian, wife, mom, sister, daughter, daughter-in-law, sister-in-law, aunt, friend, teacher, business owner, chef, chauffeur, medical insurance investigator, nurse, diabetes advocate & educator, cheerleader, short-order cook, personal shopper, tutor, editor, housekeeper, activities director, breast cancer advocate, tired, and...a cancer survivor!
I am thrilled to be the featured blogger this week on the DOC. Although, I don't feel worthy to be here. And I don't expect I can live up to the wonderful posts I've read on here recently. We are super new to blogging (and by "we," I mean "I"). Admittedly, I have been a lurker for years now. After my 22 month old was diagnosed in 2003, I began searching the internet for answers, support...anything to help me grapple with this new life that was thrown at us. A couple months ago, I decided to de-lurk myself. And I have found a real sense of calm & purpose after writing. Our blog is pretty much dedicated to diabetes-related issues. It continues to amaze me that I really never run out of ideas for posts about this disease. It will be wonderful if, one day, we could all truly say "hey, that's it...nothing else to say on the subject!"
I feel the best thing to do is to re-post about my daughter's diagnosis. If not to anyone else, it at least proves to me that it's okay to be here. So, here goes...
“So, how did you know she had diabetes?”
Inevitably, if enough information about my family is exchanged in an introduction, a new friend will come up with that question. I don’t ever want to give a pat answer. I judge the amount of time left for my response and decide which road I’ll take…
#1 answer…(not much time)…She was very, very ill with flu symptoms and ended up in the hospital. We are fortunate that it was diagnosed. Or...
#2 answer…(longer version)…
It was December 2003—all the usual hustle and bustle for the holidays. We would be hosting Dan's side of the family. I convinced him that we would need to paint nearly the entire interior of our home, add a patio cover and heat outside. So, the race was on! We would be using every waking moment (+ a few moments when we should have been asleep!) Juggling 3 young kids in and around all the commotion was a difficult task. Although, we were exhausted by the time our family Christmas gathering date arrived, it was a great time.
However, I remember the morning of the party…Claire seemed out of sorts…you know…kind of cranky, small appetite. I thought…maybe she’s coming down with a bug…but…the show must go on! She was asking for a drink of milk quite often, lifting her sipper cup up to the fridge with a “mmmm." I thought not much about it at the time. At least she’s getting some calories in her, I thought.
After our festive evening, things wound down. As we tucked the kids in for the night, we noticed Claire’s face flushed with fever and sure enough it registered on the thermometer as low-grade. She was asking for more to drink. So, a cup of juice, then off to bed. It would make sense to keep liquids in her…she had a fever.
The fever went on for a couple days, so off to the doctor we went. After a short exam--flu. You know the routine...rest and lots of fluids. Several more days went by...still feverish, drinking furiously, and now there were middle-of-the-night diaper changes. There was noticeable weight loss. That was probably one of the first nerve pings I got. This is more than a flu bug, I thought. Off to the doctor, again. Quick check...ears, nose, throat. I got a "look" from the doc--"Lady, the flu is going around." I shrank, scooped up my baby and went back home. A couple more days of the same. But now, there was vomitting (one of the great tests of motherhood, in my book). But this was not your normal "vomit several times and then get better." She would vomit and then not for a whole day, but then do it again. It just didn't make sense. Another call to the doctor. "Rest and plenty of fluids." Somewhere between doctor visits, Christmas day came and went. Dan and Claire stayed home. I took the boys out to my sister's house to celebrate with the rest of the family. And I remember calling home to see how she was doing. Dan said she had seemed really hungry and ate a bunch of scrambled eggs and seemed better and happy! (In hind sight, we know why...)
Four days after Christmas found me visiting at my sister's house. I got a call from home. Claire had woken up from her nap, vomitted, looked glassy-eyed and Dan was concerned. Some kind of nerve sensation hit me like lightning and I raced home. It was the weekend, so I grabbed the diaper bag and Claire and headed off to Urgent Care. When the "on-call" doc saw us, she checked her out and mentioned something about not having the right equipment in the office to check for this or that or "diabetes"...Our instructions were to take her to the Emergency Room across the street if she seemed any worse later that night. Around 11 pm, I peeked in to check on the kids. Both boys were sound asleep. When I entered Claire's room, her eyes were open, but glazed over. Her breathing was so shallow and rapid, almost as a panting dog. It was as if God simply took over my actions and made me pick her up, get the diaper bag and head to the E.R..
With juice in sipper, we arrived about 11:30 pm. It was packed! They checked her vitals and then, we waited. She had her blankey. We waited. She drank more juice. We waited. I changed her diaper several times. We waited. Out of drink...nearly out of diapers, I wanted so badly to go home. We almost did. I sincerely believe God took over and made me stay. Thank you! By 4:30 am, we were finally called back. I explained things as best as I could to each nurse and attendant that came by our little curtained off spot. I mentioned to the main nurse that the urgent care doctor had mentioned something about "diabetes" in a list of other issues. It was not even 5 minutes later when he came back, opened her diaper (which was on the verge of rupture!), held some kind of strip down into the moisture and said some number under his breath, something in the 500's. From that moment on...it seemed as if I was physically moved - shoved out of the way while 8-10 people converged onto Claire's bed...doing what?...I did not even know. I just knew this was serious stuff and I lost it!
I called Dan. "We're being admitted. I think she may have diabetes," I said. I cried it. I didn't even know why I was crying. I knew nothing about this disease...except maybe the sensationalism of it in the movies...losing limbs...going blind...my baby!
Suffice it to say, we were admitted to the hospital and up in a room on the Intensive Care Pediactric floor by 6:00 am. My little girl and me. I.V. hook-up. Finger pokes. Toe pokes. Blood drawn. Crying. Screaming.
Doctor entered our room. He was a kind, older man. He explained to me that Claire seems to have type 1 diabetes and that she will need to begin with insulin in her I.V. as soon as possible.
Insulin? All I ever had heard about insulin was that once a person starts on it, that's it...a lifetime. No, I didn't want that. I needed to talk with someone...someone who knows about this but who loves us too. But, there wasn't time.
The doctor was kind, but very stearn. He took me by the shoulders. "If we do not start her on insulin, she...will...die." I nearly collapsed. I sank down into the chair next to the cold, metal hospital crib. I stared at Claire's innocent little face. She was finally sleeping now. I nodded my head slowly and signed all the papers the nurse was holding.
She scurried out of the room and was back in seconds. She fiddled with the I.V., and said "there, she'll start feeling a lot better now." She turned to face me and gave me a long hug. "I'm so glad you brought her into the E.R.. You did good, mom."
So...how did we know she had diabetes? We didn't. God did.
Wednesday, June 3, 2009
Monday, June 1, 2009
Our JDRF fundraiser was actually a success in spite of the cool weather. The sun has been hiding from SoCal for the past several days. We set up our booth at the Little League Carnival early Saturday morning. We decorated the booth and set up the sno machine. The snack bar graciously allowed us to borrow it for the day. So instead of buying sno cones from them, people were directed over to our booth, where they found regular and sugarfree flavors, of course! The carnival is actually an annual fundraiser for the league, so we weren't sure about doing one for our cause. But the board was great about it and said of course we can do it. We just thought, hey, look at all the years of support C has given at this field, let's set it up here and it was great!
We had our booth right between the 2 fields where the big brothers would both be playing later in the day. It was perfect. We had a bit of a slow start with the sweatshirt weather and all...but by noon, customers came in a steady stream. We so appreciate all the donations beyond the sno cones. It was also a great opportunity to educate those who asked about our involvement in the JDRF. We may have even found a corporate sponsor for our walk team in October! You never know what can happen when you put yourself out there!
There was, however, something that took me by surprise. Maybe we've done too good of a job in not bringing attention to our diabetes situation. A family from one of our teams came to the booth and asked how we're connected to diabetes! I mean, this is a family we've gotten to know throughout the season, sat with, game after game. She looked shocked when I told her, C is type 1. Later, I thought, wow, that's so strange that it wasn't apparent to her. (She's actually in the medical field.) When it comes to diabetes, I feel like we wear it out on our shirtsleeves. But maybe we're getting too good at finger checks and solving lows!
We thanked the snack bar lady for the use of the machine and donated all the gooey, sticky, leftover syrup to the league. We had planned on giving some of the proceeds back to the league as a thank you but were told to just donate all to the JDRF! So we will be sending our profits in to go toward our team's efforts for the walk this fall. It felt good to do something for the greater good. It was so wonderful to watch the kids pitch in and help too! We thanked the other 2 "D" families who came out to help too!! Hey, we're all in this together!