Have you heard the latest song from Peter Furler? He used to be with the group News Boys (one of my all time favorite groups) I love, love his voice. The style of this song reminds me of the 80's band Erasure (I was a big fan back in the day). Watch the lyrics they really speak to my heart. (you might have to watch it on youtube to get all of the lyrics, they keep getting cut off by my template.)
Tuesday, May 31, 2011
Monday, May 30, 2011
Rain and 50s
You would think by the title of this blog post that it was going to be about the weather. It is a little. With the exception of just a day or two break here and there it has been raining nonstop for moths now. Can we get a break so the kids can at least get out and play? (enter here one of Reyna's eloquent FFS)
We are gearing up for our first official fundraiser to get Bekah's diabetes alert dog. The organization that we chose to go through actually breeds via invitro fertilization for scent recognition. When the pups are nine days of age they go through scent testing and only the ones that pass this rigorous test are sent on to be diabetes alert dogs the rest are used as family companions, hunting dogs etc. Canines of this capacity are not cheap. We are on the waiting list now and in about 8 or 9 months should have our puppy. In a couple of weeks we will be having a garage/bake sale to begin our fund raising endeavor. Our garage is filling up with donations made by friends and family to help with our sale. We brought the exercise trampoline in the house to keep it out of the way of the garage sale stuff.
It has been raining over this lovely three day weekend we are having so I didn't stop and think that a lower temp basal might be in order. Bekah is not super active especially when confined indoors. She must have been jumping on the exercise trampoline a lot more than I noticed becuase she had two BGs in the 50s through out the day. Lows are rare for her especially lows under 60. Bekah is very aware of her body and usually catches a dropping BG before it hits 70.
Last night the family was gearing up for a late night game of Catan. (we love strategy games) David was beginning to melt down and unlike my other kids needs to stick to the same schedule every night or he is a wreck for a few days. I decided that I would run up and get him down to sleep and then join in the game. I was exhausted and as I was lying with him, I fell asleep. The game commenced with out me. Our family tends to drift toward a swing shift schedule when there is no school for more than a day because my hubby is a night owl. They played until 2AM when Jason had Bekah check her BG 104 he thought that was a tad low for sleeping so he had her eat a Starburst and sent her to bed. He had some work to finish up and at 4 AM as he was walking up the stairs, he wasn't going to check Bekah's BG before retiring himself. (Night time lows are very, very rare for Bekah due to my fear of being aggressive with insulin at night, she actually tends to run a bit on the high side at night and she had just checked 2 hrs prior) Something just felt like he should. Her BG was 54. It took two juice boxes to bring her BG back up above 80. Thank-you Lord that Daddy's have good instincts too.
I have to say that my husband is pretty awesome as he has taken the night shift for me. At first he would just do the 3 AM check and has gained confidence in how to handle each number especially with the pump since he is a techy sort of guy. A few weeks ago when depression took over and I needed a reprieve, he took the midnight checks as well. With Bekah insulin seems to have a 3 hour staying power so I check to see when her last bolus was and set the kitchen timer for him for 3 hours later. It has been working well. I am getting more sleep and feeling better. He is up working anyway so it's not a big deal to take a quick break to check on Bekah. This wouldn't work for everyone but for us it does. Jason has always done his best work at night (swing shift would be ideal for him). He works mostly from home as a web developer (teaching a couple classes in between at the community college to help make ends meet).
We are gearing up for our first official fundraiser to get Bekah's diabetes alert dog. The organization that we chose to go through actually breeds via invitro fertilization for scent recognition. When the pups are nine days of age they go through scent testing and only the ones that pass this rigorous test are sent on to be diabetes alert dogs the rest are used as family companions, hunting dogs etc. Canines of this capacity are not cheap. We are on the waiting list now and in about 8 or 9 months should have our puppy. In a couple of weeks we will be having a garage/bake sale to begin our fund raising endeavor. Our garage is filling up with donations made by friends and family to help with our sale. We brought the exercise trampoline in the house to keep it out of the way of the garage sale stuff.
It has been raining over this lovely three day weekend we are having so I didn't stop and think that a lower temp basal might be in order. Bekah is not super active especially when confined indoors. She must have been jumping on the exercise trampoline a lot more than I noticed becuase she had two BGs in the 50s through out the day. Lows are rare for her especially lows under 60. Bekah is very aware of her body and usually catches a dropping BG before it hits 70.
Last night the family was gearing up for a late night game of Catan. (we love strategy games) David was beginning to melt down and unlike my other kids needs to stick to the same schedule every night or he is a wreck for a few days. I decided that I would run up and get him down to sleep and then join in the game. I was exhausted and as I was lying with him, I fell asleep. The game commenced with out me. Our family tends to drift toward a swing shift schedule when there is no school for more than a day because my hubby is a night owl. They played until 2AM when Jason had Bekah check her BG 104 he thought that was a tad low for sleeping so he had her eat a Starburst and sent her to bed. He had some work to finish up and at 4 AM as he was walking up the stairs, he wasn't going to check Bekah's BG before retiring himself. (Night time lows are very, very rare for Bekah due to my fear of being aggressive with insulin at night, she actually tends to run a bit on the high side at night and she had just checked 2 hrs prior) Something just felt like he should. Her BG was 54. It took two juice boxes to bring her BG back up above 80. Thank-you Lord that Daddy's have good instincts too.
I have to say that my husband is pretty awesome as he has taken the night shift for me. At first he would just do the 3 AM check and has gained confidence in how to handle each number especially with the pump since he is a techy sort of guy. A few weeks ago when depression took over and I needed a reprieve, he took the midnight checks as well. With Bekah insulin seems to have a 3 hour staying power so I check to see when her last bolus was and set the kitchen timer for him for 3 hours later. It has been working well. I am getting more sleep and feeling better. He is up working anyway so it's not a big deal to take a quick break to check on Bekah. This wouldn't work for everyone but for us it does. Jason has always done his best work at night (swing shift would be ideal for him). He works mostly from home as a web developer (teaching a couple classes in between at the community college to help make ends meet).
Saturday, May 28, 2011
A kerfuffle
Yesterday I had a bit of a kerfuffle (isn't that a great word) in regards to Bekah's care at school. It was mostly due to a misunderstanding and my girl wanting to be more independent than she is emotionally ready for.
In my previous post I was sharing my mama pride about how nonchalantly Bekah had become independent and was rockin' a temp basal all on her own accord. She goes through phases where she wants to take on a lot of her D care and then others where she wants me to do everything including going to get her meter for her. There is such a balance between feeling empowered and overwhelmed especially with the intensity of the tasks that it takes to manage diabetes.
The following morning as we were driving to school I remembered that I had forgotten to adjust her I:C ratio for lunch. She piped up that she could do it. I knew she didn't know how to do that but I walked her through the screens to get to the place where she could make the adjustment. I was having to grit my teeth through it becuase the lack of control was really getting to me. I know where it is and I have it neatly arranged in her pump and I was afraid she would mess it up. She did it perfect!
Just before we reached the school, my phone chimed in with a text message alert. As I pulled into the parking lot amongst the line up of cars, I glanced to see who it was from. It was Bekah's teacher letting me know that she would be out for the day. "do you want me to come to do your lunch bolus?" I asked. Bekah hates being put on the spot. "I don't know" was followed by a "no, I'll do it myself" in kind of a huffy tone. I reminded her that an adult needed to observe her do the bolus as she was bounding out of the car toward the playground.
As I drove home I felt conflicted. I didn't want her to feel smothered or like I didn't trust her by showing up nor did I want her to feel abandoned and overwhelmed if I didn't show. Something inside of me felt like I needed to be there. I made a plan to drop off some juice boxes at lunch time so I'd have an excuse to be there just in case my presence was seen as hovering.
At lunch time, I walked in the door of the school and signed in at the office. Just as I turned the corner I see wandering ALONE with her meter in hand, a very tearful Bekah. I scooped her up in my arms and gave quite an earful to the innocent teacher who happened to walk by. My thoughts went immediately to a couple that I had met just a few days before at an ADA symposium. Their daughter had been diagnosed in September just a few weeks after school started. They happen to be in the same school district as we are and share a nurse (with 3 other schools as well). This couple was in the throes of grief, stress etc and the school situation was about to drive them over the edge. I remembered full well why I was on the verge of having a nervous break down before this school year began. This couple relayed to me that one day just a few weeks prior (a good six months after dx) their daughter had been found lying down on the playground at school and was taken to the office, to the health room to lay down. Her blood sugar was not checked! The school staff thought she was probably tired becuase she had missed her snack. Hello!! There are some places our kids are not safe becuase of the ignorance out there! (yes they have a 504 in place but it doesn't get followed)
I took a deep breath through my tears and began to sort out with Bekah what had happened after first making sure her BGL was not low. About that time the substitute came walking up almost in a panic letting me know that she had been looking all over the lunch room for Bekah and she was no where to be found. This lady was so sweet! I couldn't stay angry with her. I quickly gave Bekah her bolus for lunch and sent her on her way. I then explained to the sub that there was just a misunderstanding. Apparently, Bekah thought I said, as she was getting out of the car, that I was coming to the school for lunch. She was wandering the hall looking for me. I am so glad I listened to my instinct!
The substitute told me that she volunteers at the local hospital and she was going to take the next class offered about diabetes. She seemed determined to make sure and learn what she knew she didn't know. I just wanted to hug her. She was not ignorant but knew that she didn't know much and knew that she needed to rely on others to help her to learn. She was concerned for Bekah's safety and wanted to make sure she had my number in case any thing else might come up.
On another note, changing the I:C for lunch was exactly what Bekah needed. Post lunch BG= 130...booya!
In my previous post I was sharing my mama pride about how nonchalantly Bekah had become independent and was rockin' a temp basal all on her own accord. She goes through phases where she wants to take on a lot of her D care and then others where she wants me to do everything including going to get her meter for her. There is such a balance between feeling empowered and overwhelmed especially with the intensity of the tasks that it takes to manage diabetes.
The following morning as we were driving to school I remembered that I had forgotten to adjust her I:C ratio for lunch. She piped up that she could do it. I knew she didn't know how to do that but I walked her through the screens to get to the place where she could make the adjustment. I was having to grit my teeth through it becuase the lack of control was really getting to me. I know where it is and I have it neatly arranged in her pump and I was afraid she would mess it up. She did it perfect!
Just before we reached the school, my phone chimed in with a text message alert. As I pulled into the parking lot amongst the line up of cars, I glanced to see who it was from. It was Bekah's teacher letting me know that she would be out for the day. "do you want me to come to do your lunch bolus?" I asked. Bekah hates being put on the spot. "I don't know" was followed by a "no, I'll do it myself" in kind of a huffy tone. I reminded her that an adult needed to observe her do the bolus as she was bounding out of the car toward the playground.
As I drove home I felt conflicted. I didn't want her to feel smothered or like I didn't trust her by showing up nor did I want her to feel abandoned and overwhelmed if I didn't show. Something inside of me felt like I needed to be there. I made a plan to drop off some juice boxes at lunch time so I'd have an excuse to be there just in case my presence was seen as hovering.
At lunch time, I walked in the door of the school and signed in at the office. Just as I turned the corner I see wandering ALONE with her meter in hand, a very tearful Bekah. I scooped her up in my arms and gave quite an earful to the innocent teacher who happened to walk by. My thoughts went immediately to a couple that I had met just a few days before at an ADA symposium. Their daughter had been diagnosed in September just a few weeks after school started. They happen to be in the same school district as we are and share a nurse (with 3 other schools as well). This couple was in the throes of grief, stress etc and the school situation was about to drive them over the edge. I remembered full well why I was on the verge of having a nervous break down before this school year began. This couple relayed to me that one day just a few weeks prior (a good six months after dx) their daughter had been found lying down on the playground at school and was taken to the office, to the health room to lay down. Her blood sugar was not checked! The school staff thought she was probably tired becuase she had missed her snack. Hello!! There are some places our kids are not safe becuase of the ignorance out there! (yes they have a 504 in place but it doesn't get followed)
I took a deep breath through my tears and began to sort out with Bekah what had happened after first making sure her BGL was not low. About that time the substitute came walking up almost in a panic letting me know that she had been looking all over the lunch room for Bekah and she was no where to be found. This lady was so sweet! I couldn't stay angry with her. I quickly gave Bekah her bolus for lunch and sent her on her way. I then explained to the sub that there was just a misunderstanding. Apparently, Bekah thought I said, as she was getting out of the car, that I was coming to the school for lunch. She was wandering the hall looking for me. I am so glad I listened to my instinct!
The substitute told me that she volunteers at the local hospital and she was going to take the next class offered about diabetes. She seemed determined to make sure and learn what she knew she didn't know. I just wanted to hug her. She was not ignorant but knew that she didn't know much and knew that she needed to rely on others to help her to learn. She was concerned for Bekah's safety and wanted to make sure she had my number in case any thing else might come up.
On another note, changing the I:C for lunch was exactly what Bekah needed. Post lunch BG= 130...booya!
Thursday, May 26, 2011
ode to a test strip
I find you around my house like scattered confetti
Even though your are not perfect it's the numbers you produce that allow me to bolus spaghetti
One day I do hope for better technology
as you display my child's blood with no appology
(That is a far as I got, feel free to add lines in a comment and I will compile it all to make an Ode #2)
Wednesday, May 25, 2011
Woah Nelly!
My girl is maturing before my eyes. Taking all of this d-stuff in stride (sometimes). Today her teacher text me "424, lots of tears she is drinking water and PE teacher will have her walk and not run". I was half way out the door already as I text back "on my way to check for ketones" (they have urine strips at the school but Bekah hates them.) We always use a toilet hat at home when we check ketones via urine but honestly since we have had our blood ketone meter, we have just done it with a finger prick.
I lug a sleeping David into the school to sign in and make a bee line for the gym. BG check shows 415 and ketones= 0.0 By the time I had gotten there the tears had subsided. No matter how I try to tell her that it's just a number, Bekah takes them all so personally and kind of feels like she has done something wrong when her number is high. (hmm I wonder if I am setting a bad example with those darn A1Cs, I tried not to let her see me cry on the way home from the Endo last time but she is an observer and I am sure she didn't miss it)
I already had a sneaking suspicion that her I:C ratio for lunch needed to be changed (she had been running HBG after lunch all week)and when I did the math: (pizza+fruit cup+chocolate milk = 83 g carb 1:18 ratio bolus was 4.6 HBG correction 2 hr later was .9 a 1:15 ratio would have given her .9 more) Once home her BG had gone down a bit but still needed a .55 correction as was above 300.
We did a site change and then on her own an hour later she checked her BG and told me, "mom my blood sugar is still over 300 so I set a temp basal of +60% for four hours, does that sound about right to you?"
Whoa Nelly!! When did she learn that? Is she 7? or 37??
Proud of my girl as I cry tears of sadness becuase she shouldn't have to know that!
I lug a sleeping David into the school to sign in and make a bee line for the gym. BG check shows 415 and ketones= 0.0 By the time I had gotten there the tears had subsided. No matter how I try to tell her that it's just a number, Bekah takes them all so personally and kind of feels like she has done something wrong when her number is high. (hmm I wonder if I am setting a bad example with those darn A1Cs, I tried not to let her see me cry on the way home from the Endo last time but she is an observer and I am sure she didn't miss it)
I already had a sneaking suspicion that her I:C ratio for lunch needed to be changed (she had been running HBG after lunch all week)and when I did the math: (pizza+fruit cup+chocolate milk = 83 g carb 1:18 ratio bolus was 4.6 HBG correction 2 hr later was .9 a 1:15 ratio would have given her .9 more) Once home her BG had gone down a bit but still needed a .55 correction as was above 300.
We did a site change and then on her own an hour later she checked her BG and told me, "mom my blood sugar is still over 300 so I set a temp basal of +60% for four hours, does that sound about right to you?"
Whoa Nelly!! When did she learn that? Is she 7? or 37??
Proud of my girl as I cry tears of sadness becuase she shouldn't have to know that!
The garden
The pungent smell of lilacs fills my nostrils as beads of sweat form on my brow. Overhead a melody can be heard as a song bird serenades me. I feel the warmth of the sun on my back and a peace washes over me as I toil in the dirt. I feel closer to my maker working amongst His creation. I experience that He made this earth for us to enjoy not only by basking in it's beauty but by working the land as well. I treasure the magic of the moments spent in the garden.
Thursday, May 19, 2011
Good Therapy
As Bekah and I sat and looked over the May lunch menu, there was one whole week where she pleaded with me to be able to eat hot lunch every day. I let her indulge and it just happened to be the week after my dad ended up having surgery on his neck. I decided since I was going to be out and about doing Bekah's lunch blousing (I only go to the school when she eats hot lunch) that I would check on him each day. My mom was grateful as she had to work.
My dad's yard is a paradise of sorts in the summer. He keeps 90+ geraniums in pots in a green house all winter and brings them out in the spring (or almost summer which is the case this year), he has 250+ rose bushes (we lost count along time ago and he keeps adding more) a very large lot of grass along with some trees, lilacs and various other plants. My dad's yard has won awards and could easily be pictured in Better Homes and Gardens (I think his is better looking than most I have seen in that mag). I love to sit on the porch swing and just take it all in.
I knew with his surgery that my dad would be anxious to want to "get the yard done" but wouldn't be able to. I get my stubborn streak from him so I knew that he would either re-injure his neck or be depressed as he recovered which would make the recovery process arduous for both him and my mom. So I put on my work gloves each day and did some yard work.
Growing up my dad just did all of the yard work (to be honest I didn't have much interest in it) and since I have been married, we have lived mostly in places that came with yard maintenance. I got to do things this week I have never done before. I power washed (I love this! Everything gets so clean and shiny and it is just satisfying to look back and admire your handy work), I weeded with various tools (I had mostly done this by hand before), I used the weed wacker to edge the lawn (I almost killed myself as I got the chord wrapped in it and my edge looked a bit more like a serrated knife than a straight edge), I pruned and replanted and hung geraniums (pulling the 30+ baskets out of the green house gave me a great upper arm work out). Today I put in over 7 hours. I got burned by the glorious sun that finally decided to show it's face in the PNW and I am sore but it felt so good to give back to someone who has done so much for me.
This was just what I needed to pull me out of the funk I was in! I didn't even think about diabetes or numbers (except when I took a break to run to the school for a bolus). It was amazing therapy! I get to go back for more tomorrow (I think I'll wear some sun screen).
Here is a picture I found of David sitting in one small corner of my parents' yard and another of he and Bekah in another spot. (you only get a glimpse of the mini roses here, he has amazing climbers and various other varieties) I'll be sure to post some current pics when the yard is all in bloom (too bad I can add the smell).
My dad's yard is a paradise of sorts in the summer. He keeps 90+ geraniums in pots in a green house all winter and brings them out in the spring (or almost summer which is the case this year), he has 250+ rose bushes (we lost count along time ago and he keeps adding more) a very large lot of grass along with some trees, lilacs and various other plants. My dad's yard has won awards and could easily be pictured in Better Homes and Gardens (I think his is better looking than most I have seen in that mag). I love to sit on the porch swing and just take it all in.
I knew with his surgery that my dad would be anxious to want to "get the yard done" but wouldn't be able to. I get my stubborn streak from him so I knew that he would either re-injure his neck or be depressed as he recovered which would make the recovery process arduous for both him and my mom. So I put on my work gloves each day and did some yard work.
Growing up my dad just did all of the yard work (to be honest I didn't have much interest in it) and since I have been married, we have lived mostly in places that came with yard maintenance. I got to do things this week I have never done before. I power washed (I love this! Everything gets so clean and shiny and it is just satisfying to look back and admire your handy work), I weeded with various tools (I had mostly done this by hand before), I used the weed wacker to edge the lawn (I almost killed myself as I got the chord wrapped in it and my edge looked a bit more like a serrated knife than a straight edge), I pruned and replanted and hung geraniums (pulling the 30+ baskets out of the green house gave me a great upper arm work out). Today I put in over 7 hours. I got burned by the glorious sun that finally decided to show it's face in the PNW and I am sore but it felt so good to give back to someone who has done so much for me.
This was just what I needed to pull me out of the funk I was in! I didn't even think about diabetes or numbers (except when I took a break to run to the school for a bolus). It was amazing therapy! I get to go back for more tomorrow (I think I'll wear some sun screen).
Here is a picture I found of David sitting in one small corner of my parents' yard and another of he and Bekah in another spot. (you only get a glimpse of the mini roses here, he has amazing climbers and various other varieties) I'll be sure to post some current pics when the yard is all in bloom (too bad I can add the smell).
Driving Miss Crazy
When I was learning to drive, I HATED driving with my mom. She would have one hand clutching the e-brake and the other holding on to the dash for dear life. Her shrill screams as I approached stop signs and lights could be heard for miles. I swore I was going to get I an accident not becuase I wasn't being careful but becuase she scared the crap out of me when I didn't brake quick enough for her liking. I was NEVER going to be like that.
My oldest child now has his driving permit and I do have to say it is a little unnerving seeing my baby behind the wheel. I have a rule that he can't drive with the little ones in the car. This gets me out of most of the driving duties =). Honestly dealing with the antics of diabetes as well as a strong willed toddler are about as much stress as I can take so I am happy to let Jason take the reigns on this one. It's a sneaky way to get them to do some grocery shopping too =).
A few weeks ago, Josh and I were headed to his GI appointment and it was just him and I. With a twinkle in his eye, he said "can I drive?" I had no excuse to say no so I let him drive. I could feel my blood pressure rise as I sat down in the passengers seat. I took a deep breath and reminded myself I was NOT going to be like my mom. There were a couple of times that I closed my eyes and took a calming breath but no screams were heard from me. Then we crossed the bridge over to Portland. I dislike Portland traffic! The freeway narrows as a truck passes us. (Let's just say Josh has some lane centering issues. He is becoming a really good driver though) It happens "#$%@! $%#* @#$!% !!" is heard from my mouth, mind you I didn't scream them but I did see my life flash before my eyes for a brief moment. Josh chuckles a bit and says "Mom, I didn't know you knew those words". I think I might have a few more gray hairs but we survived the drive both to and from P-town that day.
I don't have any photos of Josh behind the wheel so I will leave you with one of Kihembah at puppy kindergarten. (our baby is growing up) She moves too much to get a good still shot.
My oldest child now has his driving permit and I do have to say it is a little unnerving seeing my baby behind the wheel. I have a rule that he can't drive with the little ones in the car. This gets me out of most of the driving duties =). Honestly dealing with the antics of diabetes as well as a strong willed toddler are about as much stress as I can take so I am happy to let Jason take the reigns on this one. It's a sneaky way to get them to do some grocery shopping too =).
A few weeks ago, Josh and I were headed to his GI appointment and it was just him and I. With a twinkle in his eye, he said "can I drive?" I had no excuse to say no so I let him drive. I could feel my blood pressure rise as I sat down in the passengers seat. I took a deep breath and reminded myself I was NOT going to be like my mom. There were a couple of times that I closed my eyes and took a calming breath but no screams were heard from me. Then we crossed the bridge over to Portland. I dislike Portland traffic! The freeway narrows as a truck passes us. (Let's just say Josh has some lane centering issues. He is becoming a really good driver though) It happens "#$%@! $%#* @#$!% !!" is heard from my mouth, mind you I didn't scream them but I did see my life flash before my eyes for a brief moment. Josh chuckles a bit and says "Mom, I didn't know you knew those words". I think I might have a few more gray hairs but we survived the drive both to and from P-town that day.
I don't have any photos of Josh behind the wheel so I will leave you with one of Kihembah at puppy kindergarten. (our baby is growing up) She moves too much to get a good still shot.
Tuesday, May 17, 2011
Feeling the burn
Yes I am feeling the burn (burn out that is). It happens to the best of us and while I try to be positive and take D in stride, there are just days when it bites you in the arse. So this is one of those posts that may be a little of a Debbie Downer. (that is your warning read on if you dare)
Today has been one of those days where every turn I am either reliving Bekah's dx day. Maybe it's the weather or the smells in the air but my head keeps going back to that looong drive home from the hospital when I left her in the PICU with Jason. Or those first few nights home from the hospital where I just laid in bed and watched her sleep. When my head is not there, I am rehashing conversations that I had with Jason's best friend David. I was so ignorant. I was one of those people that I get so frustrated with today. I didn't get why it was so hard to manage his blood sugar. A+B=C right?? If only I had seen this (Written by Shawn Reynolds) maybe I would have gotten it.
Diabetes is a day in and day out struggle, everyday is like an algebra final where not all exponents are definable A=age B=bloodsugar C=carbs D=dietary fibers E=exercise F=food (though a friend tonight thinks the "F" is for something else LOL) G=growth H= HELP? (support unit) or sometimes HIGH I=insulin K=ketones L=low O=oh shit S=sugar U=up all night X= whatever in the hell it wants to be.At this B how much I for this much F with this many C minus the D if there has been no E and if there is a miscalculation of the undefined X will you get an L or an H with H being the second participle which may result in a U when the G may or may not become a factor and will K come into the equation if I is +/ - the F.If there are any problems please feel free to narrow the equation to O H F U C K if it still doesn't make sense you are not one of my friends that have been affected by diabetes, but I LOVE YOU ALL REGARDLESS. There will be a new equation EVERYDAY FOR THE REST OF YOUR LIFE, diabetes always pulls an X out of it's hat.
Today is just one of those days where the reality of diabetes is sobering to me and the weight of it feels heavy. Numbers get better then we fight lows, just as I am thinking about changing some basals, numbers go back up again. *sigh*
David woke up at 4AM sopping wet (in a diaper) and crabby as all get out. I'd be lying if I told you that I didn't once stop and think that I needed to check his BG. I didn't check though, I just concentrated on getting him back to sleep.
I believe that we as mom's set the tone of our home and it's my job to try to stay positive so this is where I come to dump the junk that gets in the way. Right now it feels like there is a mountain in my way and I don't know how to move it. While I am choosing joy, pressing in to joy and my kids would tell you that mom is still the same embarrassing, dancing in the kitchen or trying to sing (I can barely carry a tune but it makes them smile), I know the difference and today I feel the heavy weight of diabetes bringing me down.
Today has been one of those days where every turn I am either reliving Bekah's dx day. Maybe it's the weather or the smells in the air but my head keeps going back to that looong drive home from the hospital when I left her in the PICU with Jason. Or those first few nights home from the hospital where I just laid in bed and watched her sleep. When my head is not there, I am rehashing conversations that I had with Jason's best friend David. I was so ignorant. I was one of those people that I get so frustrated with today. I didn't get why it was so hard to manage his blood sugar. A+B=C right?? If only I had seen this (Written by Shawn Reynolds) maybe I would have gotten it.
Diabetes is a day in and day out struggle, everyday is like an algebra final where not all exponents are definable A=age B=bloodsugar C=carbs D=dietary fibers E=exercise F=food (though a friend tonight thinks the "F" is for something else LOL) G=growth H= HELP? (support unit) or sometimes HIGH I=insulin K=ketones L=low O=oh shit S=sugar U=up all night X= whatever in the hell it wants to be.At this B how much I for this much F with this many C minus the D if there has been no E and if there is a miscalculation of the undefined X will you get an L or an H with H being the second participle which may result in a U when the G may or may not become a factor and will K come into the equation if I is +/ - the F.If there are any problems please feel free to narrow the equation to O H F U C K if it still doesn't make sense you are not one of my friends that have been affected by diabetes, but I LOVE YOU ALL REGARDLESS. There will be a new equation EVERYDAY FOR THE REST OF YOUR LIFE, diabetes always pulls an X out of it's hat.
Today is just one of those days where the reality of diabetes is sobering to me and the weight of it feels heavy. Numbers get better then we fight lows, just as I am thinking about changing some basals, numbers go back up again. *sigh*
David woke up at 4AM sopping wet (in a diaper) and crabby as all get out. I'd be lying if I told you that I didn't once stop and think that I needed to check his BG. I didn't check though, I just concentrated on getting him back to sleep.
I believe that we as mom's set the tone of our home and it's my job to try to stay positive so this is where I come to dump the junk that gets in the way. Right now it feels like there is a mountain in my way and I don't know how to move it. While I am choosing joy, pressing in to joy and my kids would tell you that mom is still the same embarrassing, dancing in the kitchen or trying to sing (I can barely carry a tune but it makes them smile), I know the difference and today I feel the heavy weight of diabetes bringing me down.
Sunday, May 15, 2011
Diabetes blog week (last day)
Today is the last day of Dibetes blog week. Here is today's prompt:
"Last year, Wendy of Candy Hearts made a suggestion for this year. She commented “I think Day 7 should be a post about stuff we've learned from other blogs or the experience of coming together online...” Today, let’s do just that!! What have you learned from other blogs - either this week or since finding the D-OC? What has your experience of blogging the DBlog Week topics with other participants been like? What has finding the D-OC done for you? If you'd like, you can even look ahead and tell us what you think the future holds!"
I have to apologize. Diabetes blog week went by the way side for me. I had a bunch of post scheduled for each day this week. I knew that Thursday on, I would not be able to get blogs done so I wrote them up ahead of time and had scheduled them to post on each day. Well Blogger had a snafu as we all know and my posts were lost, gone, never to be seen again.
I had done a beautiful one on the good stuff that has come out of diabetes that will take me a while to re write. I will try to post it this week sometime. Maybe I'll do it different this time, we'll just have to see what comes out of my brain when I take the time to sit and rewrite it.
It's fun to get comments and I must apologize for not commenting more. I have been reading your blogs when I can and trying to get through as many posts as possible. I have decided that I will try after this week to leave well thought, encouraging comments more often.
In the last year since I found many of you, I have learned so much. I have learned that there are people who "get" my world. I have learned that 300s (and higher) happen and it's not something to get too worked up about. I have also learned that although still much scarier than my other children getting sick, I don't have to be deathly afraid of Rebekah getting sick. You have shown me tricks (not medical advice of course) that have gotten your children through tough spots and you came out of said situations with your sanity still intact. While I have learned lots of geeky stuff to fill my brain with (words like euglycemic and post prandial) and how to eloquently use swear words (hello Reyna <3). The thing I have gleaned the most from all of you is love and support. When things go well you are there cheering me on. When thing don't go so well, you are there to give me cyber hugs and encouragement. Thank-you for being my friends!
To get two post in one (yesterday was supposed to be photos) I will leave you with this photo that still stirs in me a ton of emotion
"Last year, Wendy of Candy Hearts made a suggestion for this year. She commented “I think Day 7 should be a post about stuff we've learned from other blogs or the experience of coming together online...” Today, let’s do just that!! What have you learned from other blogs - either this week or since finding the D-OC? What has your experience of blogging the DBlog Week topics with other participants been like? What has finding the D-OC done for you? If you'd like, you can even look ahead and tell us what you think the future holds!"
I have to apologize. Diabetes blog week went by the way side for me. I had a bunch of post scheduled for each day this week. I knew that Thursday on, I would not be able to get blogs done so I wrote them up ahead of time and had scheduled them to post on each day. Well Blogger had a snafu as we all know and my posts were lost, gone, never to be seen again.
I had done a beautiful one on the good stuff that has come out of diabetes that will take me a while to re write. I will try to post it this week sometime. Maybe I'll do it different this time, we'll just have to see what comes out of my brain when I take the time to sit and rewrite it.
It's fun to get comments and I must apologize for not commenting more. I have been reading your blogs when I can and trying to get through as many posts as possible. I have decided that I will try after this week to leave well thought, encouraging comments more often.
In the last year since I found many of you, I have learned so much. I have learned that there are people who "get" my world. I have learned that 300s (and higher) happen and it's not something to get too worked up about. I have also learned that although still much scarier than my other children getting sick, I don't have to be deathly afraid of Rebekah getting sick. You have shown me tricks (not medical advice of course) that have gotten your children through tough spots and you came out of said situations with your sanity still intact. While I have learned lots of geeky stuff to fill my brain with (words like euglycemic and post prandial) and how to eloquently use swear words (hello Reyna <3). The thing I have gleaned the most from all of you is love and support. When things go well you are there cheering me on. When thing don't go so well, you are there to give me cyber hugs and encouragement. Thank-you for being my friends!
To get two post in one (yesterday was supposed to be photos) I will leave you with this photo that still stirs in me a ton of emotion
Diabetes Blog Week Day 4
10 things I hate about you diabetes
1 I hate that you threaten my child's life on a daily basis
2 I hate that her life expectancy is shorter because of you
3 I hate that you make her feel so lousy
4 I hate that you don't let her "just be a kid"
5 I hate that you steal time away from her school day
6 I hate that some days our life revolves around you
7 I hate that she has to get "stuck" and see her blood multiple times a day
8 I hate that I will never again know what a full night of worry free sleep feels like
9 I hate that you never give us a break, ever
10 I hate that every single meal has to be a production of weighing, measuring and bolusing before any food can be consumed (I really hate measuring jelly for toast or PB sandwiches)
1 I hate that you threaten my child's life on a daily basis
2 I hate that her life expectancy is shorter because of you
3 I hate that you make her feel so lousy
4 I hate that you don't let her "just be a kid"
5 I hate that you steal time away from her school day
6 I hate that some days our life revolves around you
7 I hate that she has to get "stuck" and see her blood multiple times a day
8 I hate that I will never again know what a full night of worry free sleep feels like
9 I hate that you never give us a break, ever
10 I hate that every single meal has to be a production of weighing, measuring and bolusing before any food can be consumed (I really hate measuring jelly for toast or PB sandwiches)
Wednesday, May 11, 2011
Diabetes Blog Week Day 3
Today's topic is to write about bloopers. I think the nipple event in the previous post takes the cake but here is a little funny that happened to us the other day:
A few nights ago, I stumbled in to Bekah's room to check her BG. My husband usually does these late night/early morning checks but I have had a difficult time sleeping. Word of two more deaths of CWD and Hallie's story about Sweetpea in addition to our less than perfect A1C this time around has caused some very restless nights. As I went to poke Bekah's finger with "hokey pokey" she tried to roll back over on her hand. She was still very much asleep just in an active state of sleep. I got the poke done and squoze (Reyna's word) a bit obtaining the perfect size blood drop. I brought the meter with the strip towards her finger and as I approached, she reached over and wiped the blood on my shirt. Nice! Another poke and squeeze was had and again as I came in for the approach at just the correct angle to get a good BG reading (instead of an error 5) Bekah reached over and wiped the blood drop on my shirt. I began to think I was being punked. It took two more tries to get the BG reading I was trying for. I told Bekah the next morning about what happened and she didn't remember wiping blood on me but thought it was hilarious!
A few nights ago, I stumbled in to Bekah's room to check her BG. My husband usually does these late night/early morning checks but I have had a difficult time sleeping. Word of two more deaths of CWD and Hallie's story about Sweetpea in addition to our less than perfect A1C this time around has caused some very restless nights. As I went to poke Bekah's finger with "hokey pokey" she tried to roll back over on her hand. She was still very much asleep just in an active state of sleep. I got the poke done and squoze (Reyna's word) a bit obtaining the perfect size blood drop. I brought the meter with the strip towards her finger and as I approached, she reached over and wiped the blood on my shirt. Nice! Another poke and squeeze was had and again as I came in for the approach at just the correct angle to get a good BG reading (instead of an error 5) Bekah reached over and wiped the blood drop on my shirt. I began to think I was being punked. It took two more tries to get the BG reading I was trying for. I told Bekah the next morning about what happened and she didn't remember wiping blood on me but thought it was hilarious!
Tuesday, May 10, 2011
Diabetes Blog Week Day 2
Day 2's topic is to write a letter and the criteria is "You can write a letter to diabetes if you’d like, but we can also take it one step further. How about writing a letter to a fictional (or not so fictional) endocrinologist telling the doctor what you love (or not) about them. How about a letter to a pretend (or again, not so pretend) meter or pump company telling them of the device of your dreams? Maybe you’d like to write a letter to your child with diabetes. Or a letter from your adult self to the d-child you were. Whomever you choose as a recipient, today is the day to tell them what you are feeling." Here is mine:
Dear (favorite CDE),
You have been there supporting us from the beginning. You were there with me the day my world was falling apart, not only was my daughter lying in the hospital bed next to me, emaciated from a disease that tried to take her life, but my husband was not able to help me physically or emotionally as he was so very sick. My other kids weren't fairing well and I distinctly remember as I was nursing David while trying to listen to the information you were giving me, he bit down hard and I thought I was going to loose both my mind and my nipple in one fell swoop. That is now a moment we can laugh about.
You, yourself have T1D and know first hand how difficult managing blood sugars can be. You have always been like a cheerleader for us. Every time I leave your office, I feel good about myself and my daughter. I know that Bekah can still live life to the fullest when I see you. You have a contagious joy about you and don't ever let diabetes get you down or so it seems from the out side. (I'm sure like all of us you have tough days too) You always share information with me in such a down to earth fashion and are confident in my ability to implement whatever it is you are teaching us at the time.
I also think you look like a grown up version of Bekah and the moment that you were leaving our hospital room will forever be etched in my memory. There you were standing at the bottom of Bekah's bed you looking at her and she looking back at you and this surreal feeling came over me as if my daughter was looking at her future self trying to sort this new life out.
I'm glad that we have you along our journey to stand beside us and give guidance. I am so glad that Bekah has you as an example to look to, and as those teen and adult years approach you will be the one influencing her and teaching her how to best take care of her body.
You are a ROCKSTAR! Keep being awesome!
Much love,
Dear (favorite CDE),
You have been there supporting us from the beginning. You were there with me the day my world was falling apart, not only was my daughter lying in the hospital bed next to me, emaciated from a disease that tried to take her life, but my husband was not able to help me physically or emotionally as he was so very sick. My other kids weren't fairing well and I distinctly remember as I was nursing David while trying to listen to the information you were giving me, he bit down hard and I thought I was going to loose both my mind and my nipple in one fell swoop. That is now a moment we can laugh about.
You, yourself have T1D and know first hand how difficult managing blood sugars can be. You have always been like a cheerleader for us. Every time I leave your office, I feel good about myself and my daughter. I know that Bekah can still live life to the fullest when I see you. You have a contagious joy about you and don't ever let diabetes get you down or so it seems from the out side. (I'm sure like all of us you have tough days too) You always share information with me in such a down to earth fashion and are confident in my ability to implement whatever it is you are teaching us at the time.
I also think you look like a grown up version of Bekah and the moment that you were leaving our hospital room will forever be etched in my memory. There you were standing at the bottom of Bekah's bed you looking at her and she looking back at you and this surreal feeling came over me as if my daughter was looking at her future self trying to sort this new life out.
I'm glad that we have you along our journey to stand beside us and give guidance. I am so glad that Bekah has you as an example to look to, and as those teen and adult years approach you will be the one influencing her and teaching her how to best take care of her body.
You are a ROCKSTAR! Keep being awesome!
Much love,
Sunday, May 8, 2011
Diabetes Blog Week Day 1
I started my blog just a few weeks before the Diabetes Blog week last year. That is when I found many of you and you found me too. <3
Today's post is on admiring the difference. I don't have a lot of words but I just want to say that it's those of you who are playing pancreas for babies that inspire me most. Whether it be 7, 12, 18 months even 2 years old. I play pancreas to a 7 year old who can both feel and articulate her lows. She is able to tell me (mostly) what and how much she will eat. My job is a challenge but, for those of you who can't second guess how much will be eaten and have to work around the grazing that toddlers do and having no clue where that blood sugar is with out checking constantly, I can't imagine. (And for those breast feeding, how do you swag a feeding??) Babies and toddlers are so unpredictable and can't be reasoned with. I am amazed by each of you! I know the fear is the same and counting and measuring carbohydrates is not easier for me but just the nature of a baby or toddler and what brain power and lack of sleep must go in to trying to second guess what is going to work to keep their blood sugar from crashing or skyrocketing is nothing short of amazing in my book. To those of you with babies who are fighting this awful disease, my hat is off to you!
Saturday, May 7, 2011
Happy Mother's Day
Happy Mother's Day to some of the most amazing women and moms I have ever "met". I love you all! I hope your family spoils you and D behaves.
Now go check out Reyna's post becuase she says it way more eloquently than I ever could.
Now go check out Reyna's post becuase she says it way more eloquently than I ever could.
Wednesday, May 4, 2011
Good Wednesday
Roselady from Diapeepees has a good Friday post each week. I am not promising a weekly post just yet but I do think I am going to join in her efforts some time soon. Today I just needed to think about something other than D.
Here is the quote from her Good Friday post "I know diabetes can get us down. So can lots of other stuff. And, it's soooo easy to blog about the bad times. But, you know what -- I love to read the good stuff so much more! So, I'm challenging myself every Friday to come up with three things that have made the week good. And, there's a double challenge -- to make those three things have nothing to do with diabetes -- because we can't let the diabetes get so big that we forget about life's other pleasures. Interested in joining me? If so, check out my post every Friday."
Here are my three all wrapped up in this photo
First of all, is there anything cuter than a toddler bottom in underwear?? (yes at home I let him run around in unders and a t-shirt- it saves on the laundry and time to get things out of the way for business to be done on the toilet) Because we get so much rain, the play structure is in the garage.
Secondly, he is doing great with potty training! I am keeping my fingers crossed that it keeps going this great! Bonus, I have a cheerleader every time I go now. The girls just said "good job Mommy" or something of the sorts but my little scientist has to investigate the evidence (he only looks don't worry). He has to see the "snakes I made" every time I go . He is sorely disappointed when it was just #1. Yes maybe this is TMI but you know you are going to think of my little guy next time you make "snakes". I think he has a future as a Gastroenterologist or a lab tech that takes care of stool samples (someone's gotta do it).
Third, he has an obsession with putting on socks, shoes too (mostly other people's ) in the photo he is wearing Daddy's socks. He'll put on multiple pair if I let him. Yesterday I was folding and putting away his laundry and he had 3 pair of his socks on before I noticed. Cracks me up!
Fourth, (because I felt like adding a 4th) now that he is well over two years old, I am working on weaning him. It is a bitter sweet thing. Instead of always nursing him to sleep, we dance now, to Perry Como's "Catch a Falling Star". I love to just sit and contemplate him after he has gone to sleep. I will hold him in my arms and just stare at his features knowing they are changing before my eyes.
Oh no here it comes, I am getting sentimental...
Here is the quote from her Good Friday post "I know diabetes can get us down. So can lots of other stuff. And, it's soooo easy to blog about the bad times. But, you know what -- I love to read the good stuff so much more! So, I'm challenging myself every Friday to come up with three things that have made the week good. And, there's a double challenge -- to make those three things have nothing to do with diabetes -- because we can't let the diabetes get so big that we forget about life's other pleasures. Interested in joining me? If so, check out my post every Friday."
Here are my three all wrapped up in this photo
Secondly, he is doing great with potty training! I am keeping my fingers crossed that it keeps going this great! Bonus, I have a cheerleader every time I go now. The girls just said "good job Mommy" or something of the sorts but my little scientist has to investigate the evidence (he only looks don't worry). He has to see the "snakes I made" every time I go . He is sorely disappointed when it was just #1. Yes maybe this is TMI but you know you are going to think of my little guy next time you make "snakes". I think he has a future as a Gastroenterologist or a lab tech that takes care of stool samples (someone's gotta do it).
Third, he has an obsession with putting on socks, shoes too (mostly other people's ) in the photo he is wearing Daddy's socks. He'll put on multiple pair if I let him. Yesterday I was folding and putting away his laundry and he had 3 pair of his socks on before I noticed. Cracks me up!
Fourth, (because I felt like adding a 4th) now that he is well over two years old, I am working on weaning him. It is a bitter sweet thing. Instead of always nursing him to sleep, we dance now, to Perry Como's "Catch a Falling Star". I love to just sit and contemplate him after he has gone to sleep. I will hold him in my arms and just stare at his features knowing they are changing before my eyes.
Oh no here it comes, I am getting sentimental...
Tuesday, May 3, 2011
Not every A1C can be perfect...
I went in to today's endo appointment knowing that it was not going to be pretty. I still cried on the way home. I cried becuase I feel like my daughter deserves better. I have read the studies and know what a higher A1C could mean for her future.
The most challenging job I have had is being a mom. (It's incredibly rewarding but challenging non the less) That was until I became a mama pancreas. Being a mama pancreas is tedious, meticulous and draining. Unlike being a mom, the rewards are few. It takes a completely selfless attitude as your life is poured out into calculations, ratios, factors and boluses 24 hours a day, 7 days a week, with out a break, ever. I do all of this to my best ability for my daughter so that she doesn't have to do this stuff and so that she can live a long, full life ( I pray).
These last three months as a mama pancreas have been particularly challenging as Bekah came out of the honeymoon phase (where her pancreas was secreting some insulin). Her insulin needs increased. Each of her basal rates went up at least one notch and her I:C for dinner changed. On top of that she had a couple of colds, a raging ear infection, strep throat and some growth going on.
I had checked her 90 day average and got a 218 which would translate to an A1C of 9.2. I was pretty sure that it wasn't going to be that high but close. I went with the expectation of seeing an 8.6. Even her 7 day average was at a 207 so I knew the 7.2 we had seen last time was a thing of the past.
I left the endocrinologist office last time with an A1C of 7.2% hoping for a lower number at our next appointment. Unfortunately that was not the case today. 8.2% was what we left with. I know I did my best but I feel like my best was not good enough...
The most challenging job I have had is being a mom. (It's incredibly rewarding but challenging non the less) That was until I became a mama pancreas. Being a mama pancreas is tedious, meticulous and draining. Unlike being a mom, the rewards are few. It takes a completely selfless attitude as your life is poured out into calculations, ratios, factors and boluses 24 hours a day, 7 days a week, with out a break, ever. I do all of this to my best ability for my daughter so that she doesn't have to do this stuff and so that she can live a long, full life ( I pray).
These last three months as a mama pancreas have been particularly challenging as Bekah came out of the honeymoon phase (where her pancreas was secreting some insulin). Her insulin needs increased. Each of her basal rates went up at least one notch and her I:C for dinner changed. On top of that she had a couple of colds, a raging ear infection, strep throat and some growth going on.
I had checked her 90 day average and got a 218 which would translate to an A1C of 9.2. I was pretty sure that it wasn't going to be that high but close. I went with the expectation of seeing an 8.6. Even her 7 day average was at a 207 so I knew the 7.2 we had seen last time was a thing of the past.
I left the endocrinologist office last time with an A1C of 7.2% hoping for a lower number at our next appointment. Unfortunately that was not the case today. 8.2% was what we left with. I know I did my best but I feel like my best was not good enough...
Sunday, May 1, 2011
The long awaited letter
I went to get the mail yesterday with a skip in my step as the sun was shining and it was a beautiful day! I grabbed the mail that was wrapped in an coupon clipper of sorts then closed and locked the mail door. As I was walking back to the house, I casually thumbed through the envelopes that were there. Suddenly my footing came to a halt. There it was addressed to the Parent or Guardian of David xxxx. The return address showed it was indeed from the trial-net study. I could feel my body all but split in to two people. One who wanted to tear that letter open and the other that was hesitant.
As my brain wondered what would be inside I could feel the tears well up. My thoughts quickly went to a family recently adding a second T1 daughter to their world. I took a deep breath and prayed, "Ok Lord, I know You and that You are good all of the time, even if this letter does not say what I want it to, what I hope it does, Lord I know you are still good and will see me, us, through whatever we must face. Right now Lord I need your grace."
My hands now trembling I decided to open the letter before I got to our driveway so if it was bad news I could just keep walking and my family would not have to see my first reaction to whatever was inside. I slowly ran my finger through the flap. "I really don't want to open this now," I thought. I devised a plan to hide it in the mail and pretend like it never came.
Yeah right, I wouldn't be able to walk past the stack of mail with out a knot in my stomach. I slowly opened the flap and took out the letter. By this time I felt like I wanted to just go puke somewhere. I could tell it was a form letter as I opened it. I read it once and then a second and third time to make sure it said what I thought it said. Basically it read that David has no detected antibodies at this time that show him to be at risk for T1D and they recommend that he be retested in a year. A smile came across my face and I breathed a sigh of relief. For now at least, we only have one diabetes diagnosis to deal with.
As my brain wondered what would be inside I could feel the tears well up. My thoughts quickly went to a family recently adding a second T1 daughter to their world. I took a deep breath and prayed, "Ok Lord, I know You and that You are good all of the time, even if this letter does not say what I want it to, what I hope it does, Lord I know you are still good and will see me, us, through whatever we must face. Right now Lord I need your grace."
My hands now trembling I decided to open the letter before I got to our driveway so if it was bad news I could just keep walking and my family would not have to see my first reaction to whatever was inside. I slowly ran my finger through the flap. "I really don't want to open this now," I thought. I devised a plan to hide it in the mail and pretend like it never came.
Yeah right, I wouldn't be able to walk past the stack of mail with out a knot in my stomach. I slowly opened the flap and took out the letter. By this time I felt like I wanted to just go puke somewhere. I could tell it was a form letter as I opened it. I read it once and then a second and third time to make sure it said what I thought it said. Basically it read that David has no detected antibodies at this time that show him to be at risk for T1D and they recommend that he be retested in a year. A smile came across my face and I breathed a sigh of relief. For now at least, we only have one diabetes diagnosis to deal with.
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