Its that time of the year again. Its a time that my boys hate–Mothers Day followed too quickly by my birthday. They stretch their brains trying to figure out what the heck to get me for both occasions and I kindly tell them to use their imaginations. Some of my favorite gifts from them have been the ones that have taken child hours rather than Mommy dollars to come up with.
Again, this does not help my youngest son to prepare for shopping. He is not a shopper. In previous years I would drop him and his older brother off at a few stores and they would hunt. I would get candles and earrings. There would be an occasional top or other item of interest. I have to admit that they have purchased some great things for me over the years. This year he is on his own and in charge of “the shopping trip”.
This morning, as I crawled back into bed, I began to think that for my birthday or Mothers Day I would love to just be able to truly sleep without worry. I thought about this a bit more throughout the day. To go to sleep and know that everyone will be safe and all will be okay when you wake? To wake and be truly refreshed? Nah, can’t happen!
I have said it before–I am a worrier. I worry about my oldest son. I worry about my youngest son. I worry about the people I love in my life. I worry about their health. I worry about their happiness. I worry about being able to do enough. I worry about living up to my own potential.
I don’t worry about world peace. I don’t worry about global warming. I don’t worry about our latest election results. I do have limits but I worry way too much.
I then moved my thoughts to what if there was a cure? Maybe I should be one of those people asking for a cure for the Mothers Day/birthday combo attack? Nope, again its not me. Its not like I don’t want a cure. I would love to only worry about my sons dealing with regular teen stuff, university, driving, girlfriends, and growing up without the added pressure of diabetes looming in the background. I just don’t see it happening any time soon.
For some reason I paid a little closer attention the other day to closed loop research. Let’s simply say that I was unimpressed. I haven’t paid attention to other research projects. I have not looked into xenotransplants in years. I have no idea what the DRI is doing. Has I have said many times, my son does believe that he will see a cure in his lifetime. I am not sure that I will be on the right side of the sod at the time to celebrate with him. I can hope and support him but that’s as far as it goes.
So what will I take for Mothers Day? How about simply a day of not having to nag to test or bolus or even log? A day of good blood glucose levels followed by a night of Diabetes continuing to behave. And then a few days later for my birthday? Well of course a second day of the same would be pure heaven so let’s have that one with a double shot of white rum as a celebratory chaser? No this does not mean that my son is off the hook regarding shopping later this week but if he can get Diabetes to agree, that would certainly be a nice topper on two days that could potentially be about me!
Today I have been doing my very best at doing nothing. I am easily distracted and have spent more time searching for ellusive quarters to finish my latest Packrat collection than getting any meaningful work done. Its a lovely sunny day with a storm forecast for tomorrow and my get up and go seems to be flaked out in the sun.
In an effort to see some productivity today I began going through my twitter peeps to see what was new in research, blogs and of course cures for diabetes (there is no end to the number of “cure your diabetes” tweets to be seen). As I went through some great information and read some blog posts that made me sad, I read one that really made me pause. It was a “diabetic parents” blog called “Left Field“. The author’s husband, who must have diabetes, was pondering what he would do if he won a lottery. He stated that he would go to Brazil to have a stem cell transplant that would allow him to live diabetes free for 12-18 months.
My first thought was how devistating to go back to life with diabetes when your magical time was up. She went on to state that he thought being able to experience life diabetes free for the first time in his lifetime would be worth it. This made me think of my own son. Would he think the same way? He has never known life without diabetes. He can barely remember last week so there is no way he remembers life 11 years ago when he would eat without testing and bolusing.
I can’t answer for him so I wondered what it would mean for me…12 months without night testing would mean that I just might start to make up for 17 years of sleepless nights only to be thrown back into full tilt when the “cure” wore off–but I could handle that. It would mean a year without a log book. No writing down everything he ate and every reading. It would mean no readings! No nagging to test, no asking “did you bolus?”. No site changes, no insulin cartridges to fill. No trips to the pharmacy for more test strips. No more test strips in the washer. No more test strips in the dryer. No more test strips in my car, in the driveway, under the couch or in the plants!
This is getting exciting but wait…it only lasts until midnight, I mean 12-18 months. After that we are plunged back into the life of counting every carb, bolusing every morsel, testing day and night, worrying about A1c results, logging, fighting lows, injecting highs, advocating, educating, and paying the wages of more than one pharmacy employee.
Its a wonderful dream and for those who feel a cure is nearby, maybe its a fantasy they will bask in on a semi-regular basis. That was long enough in fantasy land for me. It was rather intoxicating but back to reality and getting that test strip out of my African violet so I can water it (I know it needs more help than that but its a start!).
November is Diabetes Awareness month. Since November of 2000, I have been doing all I could to raise awareness during this time frame. I would send out letters. I would forward emails. I would post statistics and explain how diabetes almost killed my son.
Yesterday marked the 90 year anniversary since Sir Frederick Banting had that “Eureka!” moment that led him to discover insulin. For those of us who have seen what life can look like without insulin, we are forever indebted to this man who died before many of us were born. The path he forged in finding an external source of insulin has allowed my son to thrive today.
Insulin is not a cure. The challenges my son faces each day amaze and frustrate me. In an attempt to watch my waistline shrink instead of grow, I decided to log all of my meals on my Blackberry. Every morsel of food would be noted and the calories would be recorded. I lasted for a day but I make my son do this regularly. I help. I calculate. I support where I can but its not an easy task. No wonder he falls sometimes but sadly for him its not a matter of vanity, its a matter of life and death. Too much or too little insulin is hazardous to his health.
Since that fateful day in March of 2000, my son has been stabbed by a needle to receive life sustaining insulin over 7200 times. The number is actually smaller than it might be thanks to the insulin pump he has been using since he was five. The “pump” has a small catheter (infusion set) that stays in his skin and is only changed every 3 days (or when it falls out while having fun).
While insulin keeps my son alive, balancing the intake of food, insulin, activity and health requires the constant lancing of his fingers to test his blood. Not including routine blood work or testing his blood for ketones, he has tested his blood with his glucometer close to 40,000 times.
I see his hands each day (which are a mess because he only uses one spot to test no matter what) and I look at the small red marks on his body that show where the last infusion set was placed for his insulin pump. I can see the evidence of all of this jabbing. As I wrote out the numbers above showing how often his body has been stabbed, my mind immediately thought of a water balloon with multiple holes and water pouring out in small streams everywhere. Thankfully he is not squirting blood on a steady basis (although he has been able to get blood for testing on occasion just by pressing on a point) but I would love to see a cure for this disease before he starts!
Yesterday I heard of another child who died because of Type 1 diabetes. She was thirteen years old–the age of my own son. She had Type 1 diabetes–like my son. She had parents who loved her and who were diligent in her diabetes care but she died anyway. That is every parent’s greatest fear. She had hopes and dreams. She wanted to die an old woman with a book on her chest…sadly she died before she became old or had any experience as a woman. It is truly heartbreaking.
This is not the first death from diabetes that we have heard of in just this past year. This is not the first time that I have heard of someone so young being taken by this disease. This death led me down a path of contemplation. Why were so many people dying? Was this something new? Did we lose children to this disease before? Had we traded rapid insulin and better technology for a higher chance of death?
Those of us who live with the unwanted houseguest called “Diabetes”, know that with tight control which promises prolonged health is the risk of severe hypoglycemia and death. Its a risk most of us take with some caution. We try to keep the A1c down. We work to maintain “normal” blood glucose readings at the risk of becoming hypoglycemic unaware. Its a scary balance. Night is our enemy as we fear, as these parents did, of waking up to our children “Dead in Bed”.
I put the question out to many parents yesterday–was diabetes more deadly now because of the advances we have or do we hear about death more because of social networking and our reliance on the internet?
The answers were mixed. Many had a new fear of this age of puberty (the last number of deaths were young teens). Were teens more suseptible because of insulin needs that changed on a daily basis with incredible swings? Did adolescence and its rebellion breed a greater risk of deadly behaviors in children with diabetes?
Others felt that technology was a good thing. We were not seeing as many complications as we once did but they noted that try as we might, we are just not pancreases. We could not do enough to mimick Mother Nature. We were not God and could not anticipate all of the body’s needs. Despite our best efforts, some form of complications or worse were likely to happen at one point. That was terrifying.
We have children and we realize a need to protect them. Many are devistated by the diabetes diagnosis because they feel that they have failed to protect their child/children. After diagnosis, the need to protect becomes even stronger because we failed the first time around. Now it becomes our job to keep their bodies healthy and strong. We fight to make sure that they have a normal life–as normal as it is to live with syringes, pumps, glucometers, and glucose tablets with you 24/7. To read of a death just shows us that our best just may not be enough.
Yes, I realize that my choice of pronouns has changed from someone else to me. I have always felt it was my job to protect my children and yet my son almost died because of diabetes and misdiagnosis. It is now my job to turn him over a healthy body when he leaves my care. Its a difficult job especially since he is at an age when he is looking for his own independence. I, like many before me, face the challenge of trying to teach him to care for himself and to be there to pick him up and dust him off when he makes mistakes. Death however makes us want to hold them close forever and never sleep again. We want to be in their lives 24/7 and keep them safe.
So to get back to my original question–has diabetes become more deadly? Probably not but it is still no less scary and no less deadly. Diabetes DOES kill despite those who think otherwise. The fear is real and, while possibly magnified by the internet, the danger is still present. The answer? We need a cure. Its sadly that simple. Until there is a cure, we will continue to hover and pray. We will lean on each other in a way not available to generations before. We will learn from each other and move forward but we will never forget those that we have lost….
I am tired. I am done. I would like Diabetes to kindly pack its bags and take the first space shuttle to Pluto. It can start walking now and meet it when the shuttle is leaving. I had suggested it could go to Mars, but my friend Pam suggested that a non-planet such as Pluto would be much more fitting. Who was I to argue?
I am just a tired Mom of a joyous teen with diabetes. Don’t get me wrong, my kid could be way worse. He has an attitude twenty times his size when he is high but we will keep him for most of the rest of the time.
Yesterday was day one of the new regime…Mom texting and son texting readings back. It was a partial success. First reading came in without prompting. I was shocked, amazed and impressed. Lunch time arrived and no word. I texted, and I texted, and I texted. Finally after school I got a reply! I was not happy. On the upside, he had remembered to do all of his tests. I said I was happy with that. I had data to work with.
He came home high but after some activity and insulin, he was back to his human self. We were looking forward to a positive day two. I told him that if he sent me the readings, which I would still verify when he got home, then I would not text him. He thought that was great and a new deal with struck.
It was soon time for me to head to bed so I checked on my child–readings were good and he was soon to fall asleep himself. I had been reading and was about to take my book to bed with me when I changed my mind and put it on the kitchen table. The sane part of me said that I would probably read a bit with my tea in the morning. The skeptical part of me said “Well, if he is low during the night I won’t have to hunt around for my book while I am waiting for him to come up!” I quickly brushed away the skeptic’s comments and crawled into my cozy bed.
I had just fallen asleep it seemed when Mother Nature called. How could I need to use the washroom already? It was only 1am. Should I do a test? I would probably wake at around 3 or 4 anyway. I was up though so perhaps it was best to go ahead and test while I was at it. Extra data is always a good thing and with that I headed in to do my Mom job.
I looked at the meter after the reading registered and shook my head. What the heck? I know that everything happens for a reason but…what the heck? He was low. How did that happen? Did I really know it was going to happen and that’s why my book was ready for me? How does my body always seem to know when to wake up? When will my son’s body do this for us?
So many questions….and so much time to ponder and come up with more. It took me over an hour to get him in a range that allowed me to sleep. On the upside, I got a lot of my book read. On the downside, I tossed and turned for another hour or two before I could fall asleep. I was exhausted when I got up to get my son off to school. I wanted nothing more than sleep. Real, honest to goodness sleep. Was that too much to ask for? Diabetes hadn’t gone to Pluto but it had gone to school with my child so maybe it was possible? Nope. After less than an hour, despite my fiance telling me I really should just stay in bed and sleep, I was up with a great desire to sleep but no ability.
Imagine how patient that made me for day 2 of the new regime? The first reading arrived. He was high again. Crap! I waited for the next reading, and I waited. I texted him to remind him. Nothing. I texted him and told him to test period. Nothing. Finally I got a reply. “I forgot to test. I will test before and after gym though.” He is supposed to test before and after gym! Ugh! When he got home there was no yelling. I was frustrated and tired. What the heck were we going to do? He swore he would do better and hey, he did remember to test before gym. Okay, I gave him that.
It will soon be bedtime for me again. I am truly hoping I can get some sleep. Basal rates are changed. Carb to insulin ratios have been altered. I need sleep. There is only so much foundation that one can put under their eyes without looking like they are practicing putting on their Halloween make up! It would really be so much easier if Diabetes would kindly move to Pluto.
October is Breast Cancer Awareness month. Everyone knows about breast cancer. If you are a woman like me, you fear it. Everyone knows pink. Everyone knows about losing a breast, chemotherapy and all of the other nasty things that come along with that horrible word–cancer.
November is Diabetes Awareness month. Very few know about diabetes. Most people think it happens to someone else. They don’t think its serious. They are not sure if the awareness color is blue or grey…and aren’t really that concerned. They know about blindness and amputation but that is not a given so its really not that big of a deal.
Its the ignorance of the disease that is frustrating. The “its no big deal.” and “You worry too much.” comments that kill you. I recently had a teacher ask me if we could arrange my child’s highs and lows around an exam schedule. She was well meaning and very sincere. She thought that perhaps with warning of when a test was coming, that we could make sure that my son did not go high or low during that time. She was told by myself and one of her colleagues that it didn’t work that way.
It is hard to make people “see” what those of us who live with diabetes in our lives 24/7 “see” each day. They don’t understand why we test during the night and deprive ourselves of much needed rest. They haven’t had a friend not wake up from diabetes. They don’t understand how quickly a low comes on even after you have recently tested. They haven’t seen a child pass out in the middle of a playground because they went low and didn’t know how to tell you. They don’t understand why we are so fearful of ketones. They haven’t seen the how quickly they attack our loved ones leaving them weak, frail, and clinging to life and how long it takes to get rid of them.
To most people, diabetes is that disease where you can’t have sugar (I mean its called “the sugar” isn’t it?). Its that disease that Grandma had but she liked to sneak cookies so its no wonder she went blind. Its not like cancer or a serious disease. No one dies from diabetes. Parents who test, hover, and want you learn about that thing called Glucagon are just those overprotective people who need to learn how to let their kids just be kids.
I don’t know how to get the majority to understand. As someone recently said, diabetes is not sexy. It is not a disease about pretty pink ribbons and cleavage. Its a disease that is grey and about blood. There is nothing attractive about diabetes. You can’t see a pancreas. Don’t get me wrong. I am very attached to my breasts and would love a day when we don’t have to worry about breast cancer but after years of being my son’s pancreas? Well, it may not be a sexy organ and it may not have any appeal to the general public but I guarantee it has my utmost respect and I would not want to lose it either.
So what is the answer? How do get more people to understand? We keep going as we are and then some. We advocate. We educate. We communicate. We teach those who want to learn. We tolerate some ignorance and try to help them to understand what this disease is really about. Its a long road. Its frustrating at times but with each person who learns the reality? Well its another person who wants a cure almost as much as those of us who live with it.
Today’s article did more than just make me wonder, it made my heart stop. I remember way back when my son was first diagnosed. I read everything that the hospital gave me and then read it again. In the literature there was a brief pamphlet on Dead in Bed. They suggested that a person with diabetes could go low in their sleep and never wake up. My first thought was…I will never, ever sleep through the night again and I have lived by that for over ten years.
When I read the article this morning I realized that people who think I am crazy for getting up so often have no idea and that I am right. Many who question my actions do so out of concern. The physical toll it has taken on my body is evident by the medications that greet me at breakfast each day. Its because of this and the fact that my chid is not with me 24/7 anymore that I have really worked this summer to get him to wake up to an alarm and test himself. I still wake up and check his meter or test him again but he is managing to wake up at least 50% of the time and test. This is huge for a child who can sleep through a fire alarm!
Recently JDRF announced that it was giving money for a Johnson and Johnson artificial pancreas research project. The other day I also noticed that they were involved in another research project with BD. I will readily admit that I have had very little to do with the JDRF since my son’s diagnosis. They are virtually non-existent in my area. I subscribe to some of their initiatives and occasionally follow some of what is being done but I am not involved with them regarding any fundraising or support.
The people that I have seen supporting them however have been very diligent. Families who create walk teams seem to go to great lengths to fundraise and let everyone know that they are “Walking for a Cure”. I therefore began to wonder how these same people felt about their “cure” money going towards diabetes tools research. Don’t get me wrong, tools are what keep my son alive. The great advances in tools are vital to me until that day comes when he or others living with type 1 diabetes can be cured. I spend a lot of time advocating to get these tools in the hands of all people living with diabetes so I am definitely in support of this sort of research. My question however, was for those who had “walked for a cure” and now saw their dollars going towards treatment.
Organizations like the Diabetes Associations openly state that money raised for them goes into a variety of pots including research and development. The JDRF website states that its “mission is to find a cure for diabetes and its complications through the support of research. ” For many that sort of a statement would suggest that a cure is its only focus. People that I have spoken with have been rather taken aback by these announcements. Some feel very betrayed while others are shocked but accepting. Many living with diabetes feel that they can still support this and feel that it is okay for them to spread their focus to living with diabetes and well as working towards a cure. Still others are sitting back scratching their heads. These people are not so sure that this is where they want their money and efforts to go any longer. Sadly there are many other organizations that would gladly accept their support.
I have no idea if this public support for techonologically based research will cost the JDRF any support or not. I am happy to see any advances that will keep my child alive, healthy and happy until that day when someone does finally discover that cure.