High Urine...A D-Momma Rant

"Your A1c is good.  Your thyroid is fine. Your urine is high. Are you supposed to have a 24 hour urine collection done?" Our nurse asked us and both of us were unsure. 


I was still trying to process.  Did she say "your urine is high"?  High in what? That isn't good. Nothing is supposed to be high. Why was she asking about the 24 hour test? She did say high urine didn't she? 


My mind was reeling but I tried not to overly concern my son. He was less than worried. I was sure that there was not a problem but why did she say high? 


What was high? Isn't that protein levels? Isn't that bad.  Doesn't that indicate kidney issues? 


We have been dealing with diabetes for over 12 years but my son is only 14.  There could not be a problem. I had to be over-reacting.


His A1c's have always been great. There is no problem. It was just a fluke. 


My son said "Didn't Grandma die of kidney failure?" 


Yes, but I explained that his previous doctor did not feel it was something for us to be concerned about. 


Crap! I have tweeted. I have gone to my trusty CWD parents list and I have chatted with my peeps on Facebook. I am doing my best to go, "yep, it showed up but that doesn't mean anything." (and people are telling me that it does not mean a lot. Even the worse case it is still very treatable with modern medication).


But...Crap I hate this disease! I hate the stress. I hate the fact that I even have to consider that this could be a problem. My son is not yet 15 years old. His kidneys should be lovely, not constantly warding off potential danger because of Type 1 diabetes. 


Okay, that is vented. I will get it out of my head and pray that they don't call back looking for more urine either way. No matter what, at least we live in a time when doctors are able to be proactive about these things. 

June DSMA Blog Carnival

Today I decided it would be a great time to answer the DSMA Blog Carnival post before I start re-posting old blogs during my vacation.  I had long since forgotten what June's topic was so imagine my surprise when I read "Do you get nervous or stressed when you have to go to your endo/doc appointment? Why or why not? Be honest."

Today is our clinic appointment! Am I nervous? No.  Am I stressed? A little. I hate the waiting at the clinic. We had a great appointment last time we were there. We chatted with the doctor.  A nurse took my son's blood for his A1c and we were out of there. We were two happy people! 

The other problem with this appointment is of course my son is having a high at night that I just can't quite tweak. They may, or may not tell me to do the things that I am considering--adjust a carb to insulin ratio to cover the food he is eating. Look at upping a basal rate before he wakes to cut down on what looks like some growth hormones kicking his butt.  That is all well and fine but remember I said that I am going on vacation and so is he? 

My son's activity level could go up as he rides his quad daily and catches up with old friends.  This will mean that the change is basal rates is unnecessary.  Add to that the fact that he isn't "that" high, he has only woken up to two lows--in his life!, and he has had a few nights when the readings were okay.  I am thinking about adjusting the carb to insulin ratio, leaving the rest and texting from Ireland to see what's what.  

Why don't I get nervous? I don't get nervous because I don't look at them as the judge and jury.  I am.  I am my worst critic. I am much tougher on us than they are.  I know what I have to do. I know the A1c that I want to see. I have said time and time again, I was trained by the best.  Between an amazing doctor for the first 10 years of diabetes and the CWD Parents list, I have learned a lot and kept myself on top of the latest information. I am not intimidated because I often know as much as the staff. We are all the experts and when there is mutual respect there can be no need to be nervous. 

So what can they do for us? I am hoping that they will begin to work a lot more with my son.  We have had the alcohol discussion. I know that they have spoken about it at FFL teen sessions.  He needs to establish a relationship with his d-team and understand why its important for him to continue to be diligent with his care after he leaves their office. Our old doctor spoke directly to him, making him take charge. I am trying to step aside more often so that they can do this in our new setting as well. My son is quiet and private but this is not the place for that privacy.  

So are clinic appointments a source of stress for us? No.  They are a necessary evil but to date we are blessed by teams that respect us and work with us not against us. 

“This post is my June entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/june-dsma-blog-carnival-2/“

Twice in one year!

Last night I pulled out the log book we are keeping for our next d-clinic appointment (and I will probably try keeping it up for a while after).  I grabbed my son's meter and began to write down the results.  

After our chat the day before about missed tests, everything was in a row.  Tests were done. Life was looking good. Readings were everywhere of course. There were highs that I thought I had taken care of and there was a low...where in the world did that come from!!! There was a low at 1am. I never dealt with that low. My son and I had watched a movie together that night and gone to bed at the same time! The lights were out in his room at midnight but there is a 2.6(47) at one in the morning!!!

I yelled out to my son. "Get out here!!!" I was trying to breathe and focus.  He was low at one in the morning.  He didn't retest but he was okay. He was alive when I checked him at 3am.  He had woken up to a low??? He has only once in over twelve years of diabetes ever woke to a low. He woke to a low? 

My son came out of his room wondering what he had done wrong.  "I tested Mom.  You can see. I did all of my tests."

"Yes and you did one at 1am and you were low."

"I know and I was scared I would fall asleep before I could retest so I made sure that I had a really big glass of juice and followed it up with bread and jam.  I figured that that should keep me safe either way."

I wanted to cry.  I was so very happy that he had woken up on his own. How did I miss this? I never even woke to hear him get up! He had done it all on his own.  He was okay! 

"You did perfectly.  I am so impressed that you woke up!"

"Me too." he said in a sheepish voice. 

"Next time, wake me up.  I would have covered you in case you fell asleep. Don't ever deal with a low by yourself if it can be helped.  Its better to have someone watch your back just in case you do fall asleep. Lows can make you tired at the best of times. Just come in and get me.  I will gladly give you a hand but you did a great job.  I am really impressed and so glad that you woke up!" 

I could see the relief in his face and again it made me want to cry.  He was growing. He was learning.  He had a few more years to get this on his own but he was working towards it and its is such a heavy burden.  I cannot begin to imagine what it is like to know, to grow up and know that if you don't wake up at night when your body is low and if you don't treat it properly...well you might not wake up.  No child, no adult for that matter should have to live with that knowledge in the back of their head. 

I am so glad he woke but boy do I hate diabetes!  

But its a LOT of work!

I know that I have said that I am not worried or fussing about my son's upcoming A1c...and I'm not.  Its past. There is nothing that can be done.  The next A1c will only have my control for 2 out of 3 months. He will be on his own for one month while he visits with family and friends. This is traditionally his worst A1c of the year. I can provide hands on help for two of those three months though.


I have been logging daily for our clinic appointment next week. Perhaps, my plan to stop logging for the past few months was a bit premature.  As I log, I find mistakes, errors, and missed tests.  There is a lot of information to learn from.  It is also a lot of work. 


I can understand why adults with diabetes get burnt out.  There is so much there. There is guilt. There is frustration.  I think that its time that I really do continue with this however but I also know that I will get bored; I will get busy; I will get frustrated.  How do I expect my son to do this later on in his life? 


I expect it because I have worked so hard for so long to teach him. I expect it because its what keeps him alive. All of my work has to make some difference. It has to sink in...but its a lot of work! The benefit is a healthy child. 


I guess that last line says it all. Its all about keeping him healthy.  I will try to keep the logging up after his appointment. I will attempt to micro manage, to teach, to breath and not freak out. The last part will be my biggest challenge. 


Its so easy to get frustrated at the same mistakes. On the upside, during this week, every day has brought a new and unique mistake! I will have to focus on that. Learning,not harping. Working together, not creating a widening gap.  Doing this for all of the right reasons and keeping communication lines open. Breathing and perhaps more wine...yeah I can do this!    

The team!

New Mantra

Its that time of the year again...the time when I begin to stress because my son will be gone for two weeks and I will not be monitoring his care.  I thought this year would be better. He had been great about testing and bolusing. He still was terrible at changing sites but there was hope! Or so I thought...


I went through his meter the other day.  All of those times that I had asked him to test? He didn't.  I didn't scream. I didn't explode. I did remind him that he was coming exceptionally close to losing privileged...like his beloved XBox but I was pretty calm on the outside. 


Inside I was a raving lunatic! Was he going to test at all while he was away? Would he care for himself at all when he had to? Will he ever get it? When will he understand that this is not about Mom harping on once again, its about his health and his LIFE!  


Not only are we days away from when my son will head off to spend time with his dad and family, but I am going away on vacation at the same time...to another continent! 


I have been given a once in a lifetime, all expense trip to Ireland for a week. Diabetes, worries, and children are not about to hold me back but...well I will still worry (in between stops at pubs, castles and walks through the countryside!) 

I have contacted my cell phone carrier and set up my phone for use while I am away.  I have some texting abilities and a few minutes of calling in case some one has died and they want to call me but have extended use of my Blackberry Messenger.  This will allow me to keep in touch with both children but trouble shoot more when it comes to my youngest son.  


I told my boys this news and my youngest son said that I really didn't have to worry. When he goes away he tends to forget his phone more than he remembers it.  He heads out for the day and leave it behind in his shed. I really shouldn't be concerned because he probably will not be around to get my messages.  That did not go over well! 


I suggested that he remember his phone. He answer my messages and most importantly...take care of himself while I am away! 


I will not worry.  I will relax and enjoy a new country.


I will not worry. I will relax and enjoy a new country.


I will not worry.  I will relax and enjoy a new country.


Yes this is my new mantra!  I know I will be fine. I know I will do my very best when my son comes home to focus on the fact that he enjoyed his time away.  I will bite my tongue when I look at his meter. I will smile and praise the things he did right. I will breath and look for a glass of the imported liquor for the times that he failed. Ideally, I will not be an alcoholic. I will be a proud momma who also had a great vacation! 

Blood Evidence

It had to happen.  Its my fear every time we travel. I don't worry about it when we are at my mom's or in a hotel (actually I do worry about it in a hotel too. I worry that they think that a murder took place in our room and that they will send the police after us later.) I worry everywhere else. 


This past weekend just shows why.  We were at Larry's brother's house and I got a text on the back deck from my youngest son. They have a beautiful home but really there was no need to text me from one room to another. I knew by the ring tone exactly who it was and I said "he had better be dying."


The text read "I am wounded". I headed to see how wounded he really was.


When I got to my son's room, he showed me the site in his arm. It was soaked in blood. He was wounded. I took him in the bathroom where we changed the site and tried to stop the gusher from doing any damage to his clothes.  Eventually it stopped and all was fine. We were both glad he had seen it before it made a mess in the bed clothes! 

As I returned to the deck, I explained what had happened and how he was worried that he would spill blood all over their bedding. Larry's sister in law was not the least bit concerned but I knew that I would still have been mortified if we had left blood stains on her stuff. 

We continued to have a great weekend. The weather was wonderful and we spent most of our time on quads enjoying the scenery.  Monday arrived quickly and it was time to return home.  There was work to be and play time was over. 


I helped my son to tidy up his bed and get his stuff together. That's when we saw it...the blood stain on the sheet. We were not as lucky as we had thought. His site had bled before he noticed and had soaked through its bandaging.  

Blood and test strips! No doubt diabetes was here!

I took the sheet off and made sure that she was aware that there was a spot that needed to be treated. 


On the upside, she knew I didn't murder anyone in the room but still....I hate leaving blood evidence of our visits behind in people's homes. 

Kids First Diabetes Second...The Full Story

I have said before and I will say it again, I was pleasantly surprised by Leighann Calentine's new book Kids First Diabetes Second.  I had seriously wondered how someone relatively new to diabetes would handle an entire book...okay Leighann is not a newbie but sadly we have been on this block a few more years and as I have said, I have become crass over the years. As I said previously, she handled it fabulously! Again, I think this should definitely be given to all newly diagnosed, anyone struggling or just wanting to read a good "diabetes" book. 

The book begins with Leighann stating that after diagnosis, she went into "mommy mode" and took it "one meal at a time".  At that point she had me hooked. I felt a kinship.  I always tell the newly diagnosed that I live life four hours at at time...basically one meal at a time when we were on MDI. She also quotes a nurse who told her that she needed to give her daughter choices but taking care of diabetes was never a choice. I also live this one. My son could choose where his site went, which finger to lance or which color pump he wanted but he could not choose not to test, inject or ultimately to pump. The Calentine's may not have had as many years of the dia-beast as we had but they had learned well and were sharing great insights with Kids First Diabetes Second!

It was great to read about the support that "Rufus the Bear with Diabetes" still gives children. I remember when I first found Rufus. I remember sharing emails with his creator and finding a wonderful new friend in Carol Cramer. Her kindness still shines through in her bears. My son still has his Rufus that we bought about 10 years ago. I made him outfits.  We received pumps for him.  I had the pleasure of giving away a large number of Rufus and Ruby bears before they were given away here in Canada.  The letters of appreciation and the sense of community that the bears brought still brings a smile to my heart. 

The advice that Leighann has given to parents of children with diabetes in the chapter titled "Your Support System" are definitely words to live by and advice that all of us that live there would also give. 

I did have to laugh however when I read about the importance of changing a lancet.  This did show the gap in our diabetes "ages".  My son changes his lancet with the changing of clocks or when no matter how hard he squeezes his finger he can't get blood. Yes, lancets are cheap but we are lazy. We use the thinnest lancets but in over 12 years we have probably not bought a dozen boxes of lancets.  We used the multi-clicks for a bit (elevating our lancet purchases) but still, he rarely changed the drum.  Most of our diabetes pals are the same way. They too would laugh at the idea of actually changing a lancet after every use. 

I also found a difference in our children.  Quinn loves to share and is open about her diabetes. My son is reserved and would rather die than have to talk to someone about it. It has been a part of his life for longer than he can remember but he remains very private about diabetes.  He hates having to be involved in anything diabetes related. That is "mom's thing". Its his disease but he will keep it to himself thank you very much. I applaud those who are able to "wear it proudly" and I was able to gain some hope in reading about Naomi, a young adult who sounds like she was a lot like my son--diagnosed at two and very private until she was in college.

I loved reading about Linda Werts who planned to move away to school with her son when he graduated high school.  How many times did my d-parent friends and I joke that we would be the mother in the Robert Munch book "I'll Love You Forever"?  When my sons were younger, they were never leaving home. They would forever live in my house and my refrigerator. Now that they are older, they both have plans of their own that sadly do not include living with Mom or Mom being allowed to move away with them. When that time comes for my son with diabetes, I will rely on those who have gone before me to guide me and I will try not to be the Munch Mother...really...I'll try...I promise...

The use throughout Kids First Diabetes Second of short essays from many diabetes "experts"...those who have "been there, done that" was wonderful.  It gave a perspective from parents who have journeyed where you have yet to tread, adults who have lived the lives of our children, and more.  These snippets truly rounded out a very good diabetes resource.  

We use different technologies.  Our children are different ages. I wondered how she avoided that slap in the face that many of us feel when we see our child "attached" to something that keeps them alive (aka an insulin pump).  For many of us, that is the one downside we faced as we journeyed down the pumping road--seeing "diabetes" by seeing our children hooked to a device,  attached to something that will keep them alive.  Despite those few differences, we are both mothers of children with diabetes. We are advocates for our children. We share our lives with others in hopes of helping them get through.  We are part of a club that no one wants to belong to but are constantly amazed by the strength of those who are invited to join.  

Leighann Calentine and her family have shown a lot of strength in their sharing and their activities. It shows throughout this book. Great job Leighann...and as for the rest of you? Go order the book for Pete's sake! Its even available for your eReader!