Obviously it has been a lengthy break...Seth has been sick in some way or another since November. His D numbers are whacked and I am so overwhelmed that I can only PRAY we survive until Spring Break next week. He is finally getting healthy, but now. Ugh, NOW. I wish I could post that we are rocking right along, but somewhere along the way this year, Seth's hormones have kicked in and so has anger, defiance, disprespect, yelling... and overnight my sweet boy has disappeared. I mourne the loss of him, it physically hurts the direction our relationship is going. This is a post I made today in one of my online forums, it's just mentally easier to cut and paste the basics and add to that than it is to relive.
I am honestly at my wit’s end with my son. I have become the enemy in his eyes and he does not want me involved on any level in his D care. I have been backing off, per his request, and not taking as much of an active role in his care and it is totally biting me (and him) in the butt.
The school nurse called last week and said that she doesn’t feel like Seth is being honest when he is telling her his numbers. I downloaded his pump that evening. When he asked to take a CGMS break, it was agreed that he should be testing 10-12 times a day because he is wrestling and swimming for P.E. It had been two weeks since I had downloaded his pump and during the two week period, he had tested 45 times, by my calculations he should have tested a minimum of 140 times. Many times he ate without testing or even bolusing. Seth was straight up lying about testing, he was making up these glorious numbers, when he was flying high.
He had a wrestling tournament this past weekend and it involved him being gone extended hours, 3-8 Thursday, 9-9 Friday and 6am-10pm Saturday. He and I had a chat about personal responsibility, calling me with his numbers, what a good range is for him to be when he hits the mat, etc. And he was so sincere, I was relieved…lesson learned. He called periodically on Thursday and less on Friday. He was done for the day by the time I got off work on Friday. When his dad and I got to the tournament on Saturday at noon, he had already been self-managing for 6 hours. We talked for a bit, found out when his next match was and then I carefully asked what his number was. His completely over the top response was that he was 175 and he is sick and tired of being just a number to me, this is his D and none of this is any.of.my.business. His attack was very rude and vile and ANGRY, people stopped cheering for the wrestlers and stared at us. I was speechless…and then p.o’d. and I still didn’t get it, until his dad said, show us your meter son. We want to see that 175. His only test for that whole day since I had dropped him off was taken about 10 minutes before he came to see us (which was about the time we got there and were walking around looking for him) and he was 400. I let his dad deal with him since he doesn’t try the attitude with him as much as he does with me. We let him wrestle his match, which he lost and which eliminated him from the tournament and then I went and told his coach that Seth was experiencing some integrity issues, was not being at all honest about his D numbers and as such we couldn’t trust him to self-manage at the tournament, so rather than let him stay the rest of the day, he would be leaving with us. Coach was not happy with Seth, because he trusts Seth to manage himself honestly, so he agreed that Seth needed to leave. Oh Seth hit the roof when he heard I told the coach, said it was a family matter that should have stayed within the family. I told him I disagreed, that it was very much a matter that coach needed to know about.
When I called the nurse today to let her know what had happened this weekend and that he needs to show her his meter every time he tests until he earns trust back, she said he had just lied to her, told her his number was 62 when it was actually 82…so it’s not just me that he is being dishonest with.
I am in the process of looking for a counselor. Due to his crummy grades, he has not had any electronics for 6 weeks, so I have no idea what to do punishment wise. I am just so afraid that if we don’t figure out a way to address these D issues and the behavioral issues with Seth, we are going to lose him and look back years from now as this being the pivotal moment.
I want my boy back in the worst way and I don't know how much of his attitude is D or hormones. UGH, UGH, UGH!
Showing posts with label Fallout. Show all posts
Showing posts with label Fallout. Show all posts
Monday, March 4, 2013
Wednesday, October 31, 2012
Honeymoon's Over
We had Seth's quarterly appointment on Monday. It was good and bad. The doctor was all over Seth for his risky behavior. It was nice to have back up with that. We even said that if he continues to bolus without testing, we will discuss going back to shots and taking a pump break...he was not happy about that.
The big news is...the Honeymoon is over.
Seth's pancreas is no longer producing any insulin.at.all. His insulin needs in the last 4-6 weeks have doubled and I didn't catch what was happening because I have been so tied up emotionally with my mom that it has just exhausted me..I need to let some of that go, because my children need to be my first priority. Where he was using around 20 units a day, we are now using 40-50. That explains why I have not been able to get him in range very easily despite making some adjustments to his pump. We have adjusted it some more and are starting to see better numbers.
The bad news...we got his A1C result.
9.9
Oh.my.gosh...that means his blood glucose has averaged 237.4 for the last three months. Hanging head in shame. I was prepared for a bad number...but this shocked me and woke me up that I cannot be on autopilot. I feel awful.
I guess the good news is we will definately see an improved A1C in January. :)
Seth wants to join the wrestling squad...we are coming up with a plan for that. Does anyone have experience keeping the pump site in during wrestling practice/meets that would like to impart some wisdom?
~B
The big news is...the Honeymoon is over.
Seth's pancreas is no longer producing any insulin.at.all. His insulin needs in the last 4-6 weeks have doubled and I didn't catch what was happening because I have been so tied up emotionally with my mom that it has just exhausted me..I need to let some of that go, because my children need to be my first priority. Where he was using around 20 units a day, we are now using 40-50. That explains why I have not been able to get him in range very easily despite making some adjustments to his pump. We have adjusted it some more and are starting to see better numbers.
The bad news...we got his A1C result.
9.9
Oh.my.gosh...that means his blood glucose has averaged 237.4 for the last three months. Hanging head in shame. I was prepared for a bad number...but this shocked me and woke me up that I cannot be on autopilot. I feel awful.
I guess the good news is we will definately see an improved A1C in January. :)
Seth wants to join the wrestling squad...we are coming up with a plan for that. Does anyone have experience keeping the pump site in during wrestling practice/meets that would like to impart some wisdom?
~B
Thursday, October 25, 2012
Kicking it!
If you have stuck with me through all my whines...thank you. I have put on my big girl panties and we are kicking 2012 back!
Now that we have had more time and a consultation with the doctor, we have discovered that Thyroid Cancer is pretty easy to treat. Who knew? And it would have been nice if the doctor would have shared that when he called and dropped the C bomb at 4:45 on a Friday evening and said "lets talk next week about treatment options". But what do I know? Maybe he had somewhere to be that was more important than setting our minds at ease.
Turns out they give you a mega dose of thyroid to stop your pituitary gland from producing the hormone that your thyroid normally produces and that the cancer feeds off of. So...my mom takes a pill and it keeps the cancer in check.
She is still in stage 3 (of 5) Kidney Failure. It is my understanding that:
Stage 4 = Dialysis
Stage 5 = Transplant list
She meets with the doctor next week to see what Stage 3 means and if it is reversible, etc...this scares me more as it is a huge fear of mine for Seth later in his life.
Seth and his diabetes is really what this blog was designed to be about, it evolved a bit, but it always comes back to that. Because diabetes is not as easy to treat as thyroid cancer. :)
Seth is in full diabetes rebellion/burn out. And.it.super.sucks.
Arguing about testing....check!
Not testing when he's not with me...check!
Lying about his numbers if I don't make him show me the BG screen...check!
Bolusing (giving himself insulin) without testing...check!
Eating without bolusing...check!
Dropping his BG tester that wirelessly transmitted to his pump into the slough...booyah!
BLERGH!!! The good news is that our insurance has finally seen the light and started covering the strips for my previously purchased Telcare meter...and now that Mr. Smartie has ruined his aforementioned tester that wirelessly transmitted to his pump with slough water, we are again using my beloved Telcare. I call that a happy natural consequence. :)
So now there is no lying about numbers or getting away with no testing, because if I don't receive the text with his BG number...he is busted. I am in LOVE with this meter, it has solved a few of these issues and I am working with Seth on the others while trying my hardest to be empathetic as to what it is like to be in his shoes.
We go in Monday for his quarterly A1C...I fully expect a crummy number. Does anyone have any suggestions as to what I can do to get through to him how serious this is? I lay awake at night worrying about what this is doing to his body. I know I am here to be his parent and not his friend, but this is driving a serious wedge between he and I. D Moms...I could use some advice. :) I have my big girl panties on and I am ready to deal.
Now that we have had more time and a consultation with the doctor, we have discovered that Thyroid Cancer is pretty easy to treat. Who knew? And it would have been nice if the doctor would have shared that when he called and dropped the C bomb at 4:45 on a Friday evening and said "lets talk next week about treatment options". But what do I know? Maybe he had somewhere to be that was more important than setting our minds at ease.
Turns out they give you a mega dose of thyroid to stop your pituitary gland from producing the hormone that your thyroid normally produces and that the cancer feeds off of. So...my mom takes a pill and it keeps the cancer in check.
She is still in stage 3 (of 5) Kidney Failure. It is my understanding that:
Stage 4 = Dialysis
Stage 5 = Transplant list
She meets with the doctor next week to see what Stage 3 means and if it is reversible, etc...this scares me more as it is a huge fear of mine for Seth later in his life.
Seth and his diabetes is really what this blog was designed to be about, it evolved a bit, but it always comes back to that. Because diabetes is not as easy to treat as thyroid cancer. :)
Seth is in full diabetes rebellion/burn out. And.it.super.sucks.
Arguing about testing....check!
Not testing when he's not with me...check!
Lying about his numbers if I don't make him show me the BG screen...check!
Bolusing (giving himself insulin) without testing...check!
Eating without bolusing...check!
Dropping his BG tester that wirelessly transmitted to his pump into the slough...booyah!
BLERGH!!! The good news is that our insurance has finally seen the light and started covering the strips for my previously purchased Telcare meter...and now that Mr. Smartie has ruined his aforementioned tester that wirelessly transmitted to his pump with slough water, we are again using my beloved Telcare. I call that a happy natural consequence. :)
So now there is no lying about numbers or getting away with no testing, because if I don't receive the text with his BG number...he is busted. I am in LOVE with this meter, it has solved a few of these issues and I am working with Seth on the others while trying my hardest to be empathetic as to what it is like to be in his shoes.
We go in Monday for his quarterly A1C...I fully expect a crummy number. Does anyone have any suggestions as to what I can do to get through to him how serious this is? I lay awake at night worrying about what this is doing to his body. I know I am here to be his parent and not his friend, but this is driving a serious wedge between he and I. D Moms...I could use some advice. :) I have my big girl panties on and I am ready to deal.
Friday, January 20, 2012
Our Terms
I came across a diagnosis story today on a blog and this mom shared something that her daughters wise and kind nurse said to them their first evening in the hospital...after my pity post earlier, this quote really jumped out and empowered me:
"He told us that we were beginning a life long journey with diabetes and the sooner we made friends with it, the easier it would be because it is much easier to carry a friend than an enemy."
These words spoke to my heart. I can't fight this, it's not going to change anything. There is no cure. There is only acceptance, after all, what is the alternative?
So diabetes: We didn't invite you into our family, but since you are here...we fully accept you in our lives so that we may live with you on OUR TERMS. You will not hold us back or define us, you will just be another part of our story as we continue to live our extraordinary life.
The Dustins
Living with T1D
Wednesday, January 18, 2012
How we roll
I don't think I've mentioned that up until today, I have not cried. I'm not sure why. Too busy coping, learning and assuring everyone that we are okay. And we are. Okay. It will be. Okay. But I am human and I am a mom.
I got up at 3:15 am to do Seth's middle of the night check. I stumbled into his room, hissed at the dog to be quiet and reached for his warm hand. He slept through, blissfully unaware. I blinked through my sleep heavy eyes at the screen and saw he was starting to go low, 90. Crap. So I woke him enough to drink a juice box from the stash in my closet, and he drifted back to sleep. Thus began the checks every 20 minutes until his number climbed back to a normal range and I could fall back into bed sometime close to 5:00. I knew I should have just stayed up at that point, but I was so tired, an hour of sleep sounded like bliss. I instantly fell asleep and must have turned my alarm off when it went off at 6:00, because the next thing I know my eyes fly open and it is 7:10. UH OH! We haven't figured out how to hurry with our new morning routine yet. I send an email to my boss go wake Seth up.
Seth's body is exhausted from being out of whack for so long. He begs and cries for me to let him stay home from school so he can sleep. I wish I could let him, but I can't let him stay home alone right now until we have better control and he is better able to manage on his own. So, I have to be tough and make him get up. It was not pretty and he is super cranky when he comes downstairs. I make the kids whole wheat pancakes with sugar free syrup and sausage for breakfast, with a small glass of milk, because the quick days of cereal are behind us. We figured out that Seth's breakfast carbs were 45. He tested and was at 115 so he only needed 3 units of insulin to cover for the meal. I oversaw the injection, and ran out to the garage to load the wood boiler and then upstairs to get ready while the kids ate their breakfast.
8:00 found us in the car heading towards the middle school. I called the school nurse to adjust Seth's testing schedule (thank heavens for blue tooth in my car), called the front desk to excuse Seth's tardiness and dropped him off.
As I was heading into town I called my husband to vent about my morning and tell him I needed a little bit more support from him with Seth's bedtime only to get tied up in a huge traffic clog caused by a poor baby moose that had been hit by a car and stopped traffic on the highway.
As I drove past the poor bloodied carcass on the road, I thought of it's poor mother and how panicked she must be feeling. That is when the enormity of this finally hit me and I couldn't hold it back any longer. This is a life threatening illness. We live with the threat of that every day and if we don't manage it correctly the consequences are staggering.
I cried for the huge weight of responsibility I carry from that and for the impact that will have everyday for Seth.
I cried for how unfair this feels.
I cried for not being able to protect my child from this.
I cried for being so grateful that it wasn't cancer.
I cried for all kinds of reasons I can't even put into words.
I was still crying 30 minutes later when I pulled into work and I was so fragile that I was on the verge of tears all day at work. I excused myself often to pull myself together.
And when the nurse called me at 2:00 to tell me that Seth was low AGAIN (70), I wanted to cry, but Seth was so nervous at that point that it was time for me to be strong and help him. Thank you Heavenly Father for giving me strength when I was so depleted. Juice was dispensed and by 2:15 when he needed to get on the bus his number was 111. I called the house at 3:00 to make sure he had gotten home okay and when he answered the phone his voice sounded a little...distant. So I asked him to check his BG while he was on the phone with me...in a panicked voice Seth told me it was 60, I asked him how he felt and he said that his hands were shaking and his legs felt funny. I closed my eyes and tried to remember what the pictograph we have posted on the fridge for this and then decided...he needed to go wake his dad up.
He handed the phone to his dad and I explained what was going on. Peanut Butter crackers were given and Seth's numbers responded well. I called our NP (she has given me her home number, how freaking awesome is that?) and we have a plan in place for adjusting his insulin the next time he goes swimming for an extended time like this, so I am feeling better...but mostly what I am feeling is ready for my husband to wake up so I can go to bed and get some sleep...because today? Today diabetes controlled us and that's just not how we are gonna roll around here.
I got up at 3:15 am to do Seth's middle of the night check. I stumbled into his room, hissed at the dog to be quiet and reached for his warm hand. He slept through, blissfully unaware. I blinked through my sleep heavy eyes at the screen and saw he was starting to go low, 90. Crap. So I woke him enough to drink a juice box from the stash in my closet, and he drifted back to sleep. Thus began the checks every 20 minutes until his number climbed back to a normal range and I could fall back into bed sometime close to 5:00. I knew I should have just stayed up at that point, but I was so tired, an hour of sleep sounded like bliss. I instantly fell asleep and must have turned my alarm off when it went off at 6:00, because the next thing I know my eyes fly open and it is 7:10. UH OH! We haven't figured out how to hurry with our new morning routine yet. I send an email to my boss go wake Seth up.
Seth's body is exhausted from being out of whack for so long. He begs and cries for me to let him stay home from school so he can sleep. I wish I could let him, but I can't let him stay home alone right now until we have better control and he is better able to manage on his own. So, I have to be tough and make him get up. It was not pretty and he is super cranky when he comes downstairs. I make the kids whole wheat pancakes with sugar free syrup and sausage for breakfast, with a small glass of milk, because the quick days of cereal are behind us. We figured out that Seth's breakfast carbs were 45. He tested and was at 115 so he only needed 3 units of insulin to cover for the meal. I oversaw the injection, and ran out to the garage to load the wood boiler and then upstairs to get ready while the kids ate their breakfast.
8:00 found us in the car heading towards the middle school. I called the school nurse to adjust Seth's testing schedule (thank heavens for blue tooth in my car), called the front desk to excuse Seth's tardiness and dropped him off.
As I was heading into town I called my husband to vent about my morning and tell him I needed a little bit more support from him with Seth's bedtime only to get tied up in a huge traffic clog caused by a poor baby moose that had been hit by a car and stopped traffic on the highway.
As I drove past the poor bloodied carcass on the road, I thought of it's poor mother and how panicked she must be feeling. That is when the enormity of this finally hit me and I couldn't hold it back any longer. This is a life threatening illness. We live with the threat of that every day and if we don't manage it correctly the consequences are staggering.
I cried for the huge weight of responsibility I carry from that and for the impact that will have everyday for Seth.
I cried for how unfair this feels.
I cried for not being able to protect my child from this.
I cried for being so grateful that it wasn't cancer.
I cried for all kinds of reasons I can't even put into words.
I was still crying 30 minutes later when I pulled into work and I was so fragile that I was on the verge of tears all day at work. I excused myself often to pull myself together.
And when the nurse called me at 2:00 to tell me that Seth was low AGAIN (70), I wanted to cry, but Seth was so nervous at that point that it was time for me to be strong and help him. Thank you Heavenly Father for giving me strength when I was so depleted. Juice was dispensed and by 2:15 when he needed to get on the bus his number was 111. I called the house at 3:00 to make sure he had gotten home okay and when he answered the phone his voice sounded a little...distant. So I asked him to check his BG while he was on the phone with me...in a panicked voice Seth told me it was 60, I asked him how he felt and he said that his hands were shaking and his legs felt funny. I closed my eyes and tried to remember what the pictograph we have posted on the fridge for this and then decided...he needed to go wake his dad up.
He handed the phone to his dad and I explained what was going on. Peanut Butter crackers were given and Seth's numbers responded well. I called our NP (she has given me her home number, how freaking awesome is that?) and we have a plan in place for adjusting his insulin the next time he goes swimming for an extended time like this, so I am feeling better...but mostly what I am feeling is ready for my husband to wake up so I can go to bed and get some sleep...because today? Today diabetes controlled us and that's just not how we are gonna roll around here.
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