This week I had the "opportunity" to be a single parent. The husband was in Ohio for a work training. Unfortunately, this was what I term- OPENING WEEK- of our busiest time of the year. So, beginning Sunday I managed a total of 6 hockey practices, 3 figure skating practices, 2 parent meetings, and a figure skating test session. This is on top of my paying job- which for some reason was even more high need than usual- and the basic requirement of providing food, clothing, shelter and in our case Diabetes care to the offspring! Thanks to help from all the kids, grandpa, and some friends for providing some rides, we survived!
I knew that I was feeling stressed out but it wasn't until Saturday morning as we were racing around getting ready for Tessa's volleyball game that I exploded. I had asked for a few things to be done around the house before visitors came that afternoon. When Tessa and I got home from the game, it wasn't done. Of course, when I asked about it, there was a million excuses. One was too busy, one forgot, and the other couldn't even hear me talking because she was so focused on Facebook. Let's just say what followed was not 10 minutes of my best parenting! In the end, they did what I asked, however it was one of those parenting moments I would have liked to take back. At the same time, I wonder why I can manage a room full of kids with emotional disorders all day long and rarely lose my temper (at least outwardly) but my own kids can turn me from Super Mom to Banshee from Hell in a matter of minutes! Is it that I expect more from them or that ultimately I am annoyed at myself for not being able to "do it all?" I know that they need to be responsible for helping out at home, that is what will make them responsible adults. But, wouldn't it be nice if they didn't have to anything they didn't want to do? Wouldn't it be nice if I didn't have to do anything I didn't want to, for that matter! (I am speaking strictly HOUSEWORK here!)
So, as I leave to take TJ to a birthday party, I am still feeling pretty high strung. I am mumbling to myself about all the things I need to do and not enough time and wishing we would strike it rich so Alice from the Brady Bunch could move in and clean my house, do our laundry, and cook our supper! I would even take an Avocado colored kitchen if she came with it! I am taking a few cleansing breaths as we drive and I notice a lady walking down the street with a shopping cart. She is dressed in many layers of clothes. Granted, it is 14 degrees outside so this is necessary but in her case, the layers didn't work together in a fashionable way. It was more functional and her shopping cart seemed to contain an equally random mix of things. TJ said, "She sure had to walk a long way from the grocery store to get home." I had to explain to him that she wasn't coming from the grocery store and that everything she had with her probably was her "home." Talk about perspective slapping you in the face! And for whatever reason, on that freezing cold day, it seemed like there was someone on every corner. This is North Dakota- there should not be people on street corners at all, much less in the winter! When we got to our destination, I sent an apology text to the girls for losing my temper. I realized I wasn't so mad at them for not doing what I asked, just feeling the stress from the week coupled with that parental feeling that comes with teenagers that they take everything for granted!
On my way home, I tried to remind myself to live in the moment and not get so caught up in the big picture all the time. Worrying is my specialty. I have gotten better about not letting it consume my life, but there are still times that it takes up more energy than it should. I am still a work in progress in this area. For this weekend, we were lucky enough to have some family in town visiting. This gave me a chance to refocus.
The husband was safely home, Tessa passed her first ever figure skating test, TJ had a birthday party,
we watched some hockey, we watched the kids swim, we watched them fight and we watched them become friends again. As a bonus, my new breakfast in a crockpot recipe was awesome! As I type this, Tylie is folding a basket of laundry that I didn't even ask her to fold. Who needs Alice? OK, I won't lie, she would be a nice addition to our family, but the bottom line is- we are blessed.
Sunday, November 20, 2011
Monday, November 14, 2011
All in This Together
We have had two diabetes related appointments in the last 5 days. Tylie went last week and met with the Diabetes Educator. It wasn't a good meeting and it wasn't a bad meeting. Her A1c was exactly the same. Now, I would love for that number to go down a little bit, but it isn't horrible. Taya had an appointment today with the Nurse Practitioner that manages their pumps. Again, it wasn't a good meeting or a bad meeting. Her A1c went down .3, which isn't much as it still has a way to go. However, going into each appointment, both girls already had a pretty good idea what the professionals were going to tell them. They need to be more diligent. This is the part that kills me. I know that being a teenager is hard just by itself. The teenage brain is forgetful, this is what science tells us anyway. This same 'forgetful' tendency that drives me crazy when the forget to sweep or dust or take out the garbage or do their homework- breaks my heart when they forget to test their blood sugar or bolus for food. I understand the science behind it, I just hate it. Overall, the girls are very responsible. They have decent grades, they work hard in their chosen activities, they help with their younger siblings. They don't make bad choices as a rule. Just this weekend Tylie went to go pick up a friend that found herself in an uncomfortable position after she herself had chosen not to stay because she "had a feeling" it wasn't going to go well. I am very proud of them because I have seen other children with chronic illnesses make some really bad choices- some would call it rebelling- as teenagers. I know there are many (most) days they are angry and dislike being attached to a machine. But, they persevere.
We have reached a stage in diabetes management where I have to let them find their own way. They have to live with this for the rest of their lives for all we know today so they need to find a way to manage it that works for them. Sometimes they get into a routine that works and we have some A+ days. Other times, they get sucked into 'life' and diabetes management suffers. As the parent, I still ask if they checked each day, upload their pumps on occasion to keep them honest, but I too get sucked into life. They have become so responsible, that there are days that I take it for granted they are taking care of themselves. After TJ's last appointment when he had the perfect A1c, he showed it to the girls and their response was, "Mom does it for you, of course it's good." That was a reminder to me that I need to stay more involved. They might be as tall as me and drive their own cars, but they are still kids. Even when they look at me with the rolled eyes, or talk to me in that bored, annoyed voice- it's my job to check on them. Which, kinda stinks actually because if you have ever parented a teenager you know that they think you are an annoying idiot most of the time! Chasing after them asking if they checked their blood sugar or if they have emergency supplies with them does not win me any brownie points, let me tell you! But, they can spend hours doing their hair or deciding what to wear. It seems it should be easy to find 30 seconds to check blood sugar and bolus as needed. We are working toward a balance. I will watch them do finger pokes in the morning and at bedtime. If we are together at supper, I will police that, too. The rest of the time, I have to trust (and maybe send a friendly text reminder or two) that they are making good decisions and following through. TJ has agreed to assist me with the morning reminders and if I am on the road with one kid or another then it's dad's job! We truly are all in this together. This is not going to be easy as we start our busiest time of year but the next A1c is 3 months away and my goal is a 1 point drop for each of them! I think it's an appropriate goal for World Diabetes Day.
These are the insulin angels that Tylie and TJ made at our last support group get together. I thought it would be appropriate to post the picture today in honor of all the Dkids that are alive today because of the discovery of insulin (Thanks, Dr. Banting!) and all the angels in their lives that help us fight the battle every day!
We have reached a stage in diabetes management where I have to let them find their own way. They have to live with this for the rest of their lives for all we know today so they need to find a way to manage it that works for them. Sometimes they get into a routine that works and we have some A+ days. Other times, they get sucked into 'life' and diabetes management suffers. As the parent, I still ask if they checked each day, upload their pumps on occasion to keep them honest, but I too get sucked into life. They have become so responsible, that there are days that I take it for granted they are taking care of themselves. After TJ's last appointment when he had the perfect A1c, he showed it to the girls and their response was, "Mom does it for you, of course it's good." That was a reminder to me that I need to stay more involved. They might be as tall as me and drive their own cars, but they are still kids. Even when they look at me with the rolled eyes, or talk to me in that bored, annoyed voice- it's my job to check on them. Which, kinda stinks actually because if you have ever parented a teenager you know that they think you are an annoying idiot most of the time! Chasing after them asking if they checked their blood sugar or if they have emergency supplies with them does not win me any brownie points, let me tell you! But, they can spend hours doing their hair or deciding what to wear. It seems it should be easy to find 30 seconds to check blood sugar and bolus as needed. We are working toward a balance. I will watch them do finger pokes in the morning and at bedtime. If we are together at supper, I will police that, too. The rest of the time, I have to trust (and maybe send a friendly text reminder or two) that they are making good decisions and following through. TJ has agreed to assist me with the morning reminders and if I am on the road with one kid or another then it's dad's job! We truly are all in this together. This is not going to be easy as we start our busiest time of year but the next A1c is 3 months away and my goal is a 1 point drop for each of them! I think it's an appropriate goal for World Diabetes Day.
Tuesday, November 1, 2011
Why TI Diabetes Day?
This past weekend TJ, Tylie and I had the opportunity to attend a workshop for families and children with diabetes. Taya and Troy were unable to attend due to a volleyball tournament. Tylie had been asked to paint faces of the littler children there and to help with the children's part of the workshop. At the end, she and I were part of a panel of families talking about about the insulin pump.
Prior to this portion of the program, a local doctor presented on the current research in diabetes with the emphasis on T1. Before I share what I learned, I need to journey back to when Tylie was diagnosed so you can get the full significance of how far research has come and how important these projects continue to get funding. It will be 12 years in January that we first heard the words "Your daughter's pancreas no longer produces insulin. She has Juvenile Diabetes." We are thinking with a key word like "juvenile" she will outgrow this ridiculous condition. And, naive as we were, we asked when this would happen. We were told this condition was also called "Type 1 Diabetes" which means that her pancreas will never again produce insulin. Something- probably a virus- mistakenly attacked the cells in her pancreas where insulin is produced and destroyed them. This is different than "Type 2 Diabetes" which means your body doesn't produce enough insulin. This type of diabetes does not always require insulin and is largely treatable and preventable with diet and exercise. In order for her to get the energy she needed from the food she ate, we would need to give her insulin injections- everyday, more than once. We would have to check her blood sugar, everyday sometimes more than 8 times. That's a lot of poking! And, that doesn't even include the blood draws needed every 2-3 months.
Now, 12 years later, I can clearly remember sitting in her hospital room learning about the peaks and valleys of the two types of insulin she would need. In the morning, we would need to make a "cocktail" (not the happy kind) of NPH (cloudy) and Humolog (clear). She started out on the tinest dosage- under 2 units total. I kept thinking this microscopic dot of stuff sure caused a lot of trouble! She would take a shot in the morning and a shot of Humolog at supper and NPH at bedtime to carry her through the night. Then, we had to feed her based on those peeks and valleys- "feeding the insulin" we often referred to it. While giving us our lesson, our doctor told us- "There is so much research going on that in ten years you will be shocked by how far you have come." Holding my baby girl that day and a year and a half later her little sister, I desperately hoped this was true!
We continued with mixing shots for a couple of years and then a "miracle" insulin became available to us called Lantus. Lantus lasted 24 hours without peaks and could serve as a "background" insulin. The goal was to get rid of the dramatic highs and lows and then be able to give faster acting insulin at meal time to cover the food. We no longer had to be quite so tied to the clock and when these insulins became available in pen format our lives became that much easier. However, shots were still required and in Taya's case, sometimes up to 8 times a day. And, they were not fun. We kept hearing about this thing called the insulin pump. This miraculous machine that could hold insulin, calculate your dosage, and only need to be changed every three days. (Okay, I am simplifying here, but you get the picture.) However, there was also this thing called insurance that liked to put up road blocks. But, many letters and pages of documentation later- the girls got their own insulin pumps! They were started on Taya's 10th birthday- 8 years after Tylie was first diagnosed. What a blessing these little contraptions are for these kids! Our Diabetes Educator still remembers how excited Taya was when we came back for our first set change. She told her, "That was 17 shots I didn't have to take!" However, it was not a cure and 10 years later we heard the dreaded diagnosis a third time. He is now also on an insulin pump.
So- yes, things have definitely changed! And for the better- but it isn't perfect. It isn't a cure and it isn't a pancreas and it didn't stop it from happening to our baby boy. There are lots of bumps along the way and lots of room for human error. The pump is a great tool for the potential to successfully control diabetes but it isn't the answer. My kids are still responsible for counting every carbohydrate they eat, checking their blood sugar and putting all those numbers into this little machine that does the math for them and so that it can secrete the right amount of the magic insulin. But it doesn't account for extra activity, crazy teenage hormones, a set that doesn't work correctly or falls out at an inopportune time, or a sick day. All things that the body of a person without T1 does without an ounce of thought.
And, now, back to where I began. Research! Europe is so far ahead of the US in this area. The first closed looped artificial pancreas was started just this last week. Two places making great strides on this continent are Sanford Health and the University of Minnesota. (Those that know me may be shocked I would promote U of M, but remember it's only their hockey team I have a problem with!) Many studies have been successfully able to produce the cells necessary in animals but they can't get them to stop producing. (They become cancerous.) The one I found most interesting was the use of endometrial cells to create islet cells. This would eliminate the need for anti-rejection medication because a woman could use her own tissue. They have found that BCG- a tuberculosis vaccine- can be an effective vaccine if you are found to have the antibodies that predispose you to developing T1. The list is endless. JDRF- the Juvenile Diabetes Research Foundation- funds nearly 60% of the current studies going on in the US. 86% of all funds donated to JDRF go directly to research for Type 1 Diabetes. This is only possible due to the tremendous amount of volunteers and ongoing fundraising efforts. These studies also pave the way for insight into other autoimmune disorders. Links below are provided for some more reading on these studies and JDRF in general. These studies currently provide hope and I pray for the day the provide a cure!
http://www.mmf.umn.edu/diabetes/stories/index.cfm
http://www.jdf.org/
http://www.jdrf.org/index.cfm?page_id=116413
http://www.sanfordresearch.org/ResearchCenters/SanfordProject/
http://www.sanfordproject.com/Newsroom/JDRFPartnership/
Prior to this portion of the program, a local doctor presented on the current research in diabetes with the emphasis on T1. Before I share what I learned, I need to journey back to when Tylie was diagnosed so you can get the full significance of how far research has come and how important these projects continue to get funding. It will be 12 years in January that we first heard the words "Your daughter's pancreas no longer produces insulin. She has Juvenile Diabetes." We are thinking with a key word like "juvenile" she will outgrow this ridiculous condition. And, naive as we were, we asked when this would happen. We were told this condition was also called "Type 1 Diabetes" which means that her pancreas will never again produce insulin. Something- probably a virus- mistakenly attacked the cells in her pancreas where insulin is produced and destroyed them. This is different than "Type 2 Diabetes" which means your body doesn't produce enough insulin. This type of diabetes does not always require insulin and is largely treatable and preventable with diet and exercise. In order for her to get the energy she needed from the food she ate, we would need to give her insulin injections- everyday, more than once. We would have to check her blood sugar, everyday sometimes more than 8 times. That's a lot of poking! And, that doesn't even include the blood draws needed every 2-3 months.
Now, 12 years later, I can clearly remember sitting in her hospital room learning about the peaks and valleys of the two types of insulin she would need. In the morning, we would need to make a "cocktail" (not the happy kind) of NPH (cloudy) and Humolog (clear). She started out on the tinest dosage- under 2 units total. I kept thinking this microscopic dot of stuff sure caused a lot of trouble! She would take a shot in the morning and a shot of Humolog at supper and NPH at bedtime to carry her through the night. Then, we had to feed her based on those peeks and valleys- "feeding the insulin" we often referred to it. While giving us our lesson, our doctor told us- "There is so much research going on that in ten years you will be shocked by how far you have come." Holding my baby girl that day and a year and a half later her little sister, I desperately hoped this was true!
We continued with mixing shots for a couple of years and then a "miracle" insulin became available to us called Lantus. Lantus lasted 24 hours without peaks and could serve as a "background" insulin. The goal was to get rid of the dramatic highs and lows and then be able to give faster acting insulin at meal time to cover the food. We no longer had to be quite so tied to the clock and when these insulins became available in pen format our lives became that much easier. However, shots were still required and in Taya's case, sometimes up to 8 times a day. And, they were not fun. We kept hearing about this thing called the insulin pump. This miraculous machine that could hold insulin, calculate your dosage, and only need to be changed every three days. (Okay, I am simplifying here, but you get the picture.) However, there was also this thing called insurance that liked to put up road blocks. But, many letters and pages of documentation later- the girls got their own insulin pumps! They were started on Taya's 10th birthday- 8 years after Tylie was first diagnosed. What a blessing these little contraptions are for these kids! Our Diabetes Educator still remembers how excited Taya was when we came back for our first set change. She told her, "That was 17 shots I didn't have to take!" However, it was not a cure and 10 years later we heard the dreaded diagnosis a third time. He is now also on an insulin pump.
So- yes, things have definitely changed! And for the better- but it isn't perfect. It isn't a cure and it isn't a pancreas and it didn't stop it from happening to our baby boy. There are lots of bumps along the way and lots of room for human error. The pump is a great tool for the potential to successfully control diabetes but it isn't the answer. My kids are still responsible for counting every carbohydrate they eat, checking their blood sugar and putting all those numbers into this little machine that does the math for them and so that it can secrete the right amount of the magic insulin. But it doesn't account for extra activity, crazy teenage hormones, a set that doesn't work correctly or falls out at an inopportune time, or a sick day. All things that the body of a person without T1 does without an ounce of thought.
And, now, back to where I began. Research! Europe is so far ahead of the US in this area. The first closed looped artificial pancreas was started just this last week. Two places making great strides on this continent are Sanford Health and the University of Minnesota. (Those that know me may be shocked I would promote U of M, but remember it's only their hockey team I have a problem with!) Many studies have been successfully able to produce the cells necessary in animals but they can't get them to stop producing. (They become cancerous.) The one I found most interesting was the use of endometrial cells to create islet cells. This would eliminate the need for anti-rejection medication because a woman could use her own tissue. They have found that BCG- a tuberculosis vaccine- can be an effective vaccine if you are found to have the antibodies that predispose you to developing T1. The list is endless. JDRF- the Juvenile Diabetes Research Foundation- funds nearly 60% of the current studies going on in the US. 86% of all funds donated to JDRF go directly to research for Type 1 Diabetes. This is only possible due to the tremendous amount of volunteers and ongoing fundraising efforts. These studies also pave the way for insight into other autoimmune disorders. Links below are provided for some more reading on these studies and JDRF in general. These studies currently provide hope and I pray for the day the provide a cure!
http://www.mmf.umn.edu/diabetes/stories/index.cfm
http://www.jdf.org/
http://www.jdrf.org/index.cfm?page_id=116413
http://www.sanfordresearch.org/ResearchCenters/SanfordProject/
http://www.sanfordproject.com/Newsroom/JDRFPartnership/
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