Monthly Archives: April 2014

The diabetic blues…

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Over the last 7 months, I have lived through more than I ever thought I could. I gave birth to a child. I was immediately separated from that child who was shipped off to the nearest NICU. We almost lost that child, which prompted a move to a larger, farther NICU. No one could figure out what was wrong, so we waited. We found out he wouldn’t get better. We tried to squeeze a lifetime into 25 days. We lost that child. We went home without him. We planned a funeral for that child. We buried that child. We are grieving that child.

In the midst of all of this, I went through what every woman who has a child goes through. I had to figure out breast milk and pumping. I had to deal with surgical recovery from a c-section. I had to make a whole lot of decisions I didn’t know how to make because I was a first time mom. I felt overwhelmed and out of my element. I felt exhausted, mentally and physically. I seem to have forgotten how to do laundry or housework in a consistent way because I am too distracted. This is the world that all post-pregnancy folks have to navigate.

Now, as an extra super bonus, I have Type 1 diabetes. I have an awesome insulin pump that is a lovely cobalt blue color that helps an awful lot. I also have a sensor that is a CGM (continuous glucose monitor) that has made it much easier to control my highs and lows. I have a lovely doctor and a dietitian who I don’t want to stab (I know this sounds dramatic, but I have had some pretty seriously bad ones over the last 25 1/2 years), so that’s good. In theory, I know what to do, when to do it, how to adjust, etc. I upload my pump like clockwork, I get the feedback, I change my settings, I test my blood sugar, I try my best to not eat too much junk…all the things I am supposed to do. When I was pregnant with Bennie, I was diligent about my diabetes care. I upped my test to 10+ per day. I religiously changed my infusion set and made sure my sensor was charged. I went to the doctor every month, sometimes twice. I ate 6 times a day, carbs at 30-30-60-30-60-30 grams per time. I had an A1C (the measure of your average control over time) of 5.4, which I have NEVER had…EVER…in 25 years. I was ON it. And, through all of it, I had a great husband who cooked and made healthy things for me, who encouraged me when I was having a bad day or I couldn’t feel the tips of my fingers from testing…it was perfect. The numbers, that they tell you are so important, were as close to perfect as they would ever be. The check ups were great. For the first time since I was 9, I didn’t dread going to the doctor because I wasn’t going to hear that I had to do better…I was going to hear that I was doing GREAT! I loved that. A whole lot.

Then, as things happen, it seems that this perfection did absolutely nothing to help. No, I know that is not actually true. I know that it made Bennie’s life, in utero, the very best it could be. It made his weight and his general health good. But, it did not (well, nothing could) stop the birth defect. It did not mean he would live. It DID give those who did the autopsy something to talk about…this “diabetic mother” whose child “may have been more susceptible” to this or that. Of course, immediately AFTER that comment, it said it was just as likely that it had absolutely nothing to do with it. But you know what? That made me SO angry. Probably the angriest I have been since the day I had to hand Bennie to a nurse and walk away. You know why? Because so much of my life has been FULL of the “complications” that “could, might, may, are likely” to occur because I am diabetic. I am at greater risk for everything from the flu to cancer to whooping cough to probably the black plague. I am at greater risk for infertility, so the assumption is made that that MUST be the reason it took a little longer than “normal” to get pregnant. It must me that somehow I am to blame, that this disease that I did not choose, that shapes my life every single day, must be the cause. Sometimes, the fact that medical professionals use this disease as what feels like an excuse just makes me angry. Now, I will never say that it doesn’t play in…because, the reality is that of COURSE I am at a greater risk than someone who has a functioning pancreas is for problems. Because theirs works and mine doesn’t. No kidding. Boy, I never would have figured. (insert sarcasm here) But uf, there are days it just ticks me off.

Now, the follow up to all this complaining is that hormones are a big factor in blood glucose control. This means that post-pregnancy hormones, which make even the most stable person a little crazy, have wrecked havoc on my readings. Additionally, after all those months of diabetic “perfection” I was exhausted…full of grief…angry…unrepentant in my need to eat “comfort food” because somehow, SOMETHING had to make me feel better. I am a stress eater, for certain. It is how I learned to cope…nothing a good hotdish and some fresh rolls can’t fix, right? And honestly, I couldn’t raise the energy to care. Like every person who has a chronic condition, there are moments in time that you just want a break…from thinking about it…from dealing with it…all of it. Now, of course, the trick to this is that if you take too much of a “break”, you’ll die. Yeah. Not good. But, for those who deal with chronic anything, we all know what I’m talking about. That, “I really don’t care and I really just want to be “normal” for a few hours/days/weeks/months”…yeah. I am there. My doctor tells me to do better. To meet with the dietitian more…no just because I don’t want to stab her, doesn’t mean I want to become her close friend. To get it together. To get back on track. To understand that all that vigilant care I have been giving myself for the last year MEANS something. Longevity. A better life. A healthier future. Yep. OK. I get all of that in my head. Just like many things I have been dealing with since Bennie. It’s amazing how logically I can grasp it, but physically, mentally, emotionally…that is out the window like they are speaking a foreign language. Mostly it sounds like the teacher on Charlie Brown…”wah, wah, wah”. Don’t get me wrong. I am making efforts. I am trying. I am not “uncontrolled” or in danger of coma. I am just really pretty tired. And also, selfishly, I would like something GOOD to come out of all that hard work…which, of course it did…but then, it was gone so quickly that my heart (and apparently my pancreas) haven’t quite caught up. Tricky. All of it.

When I first got my insulin pump, I made a 3 ring binder to track all my test and levels and carbs and such. I decorated it with cloud paper and gerbera daisy stickers (I was 20 at the time) and wrote in large cursive letters, “Love your pancreas, even if it’s blue”. I thought it was whitty and clever and my own joke. I think, in hindsight, it was my way of coping with another life change. I suppose this blog is similar…figuring out how to find the good, even in a hard or overwhelming circumstance. So, maybe I need to recreate it, that binder of magical information. Maybe that would help to fall in love with this magical piece of technology that has made my life so much easier. In 2001, it was just that. Magic, of the highest order. I think, like any relationship, I maybe got a little too comfortable. A little too presumptuous. Because, the magic doesn’t happen without my help. I have to work at it. Someday, maybe, they’ll have an artificial pancreas (well, they do have one in trials, I guess) that will just do the work for me. I will sing and dance and shout if and when that happens. But for now, I guess I have to fall back in love somehow, with my blue companion that has seen me through the worst and is still hanging around, even if I’ve been a bit neglectful. I thought many times when pregnant with Bennie about how much I wished that he would NOT have to deal with diabetes. At least himself directly. I hoped and prayed that it would miss him. Not because it is not survivable, but just because it takes a front seat in life forever and I would rather he fill his time and energy and heart and mind with other things. It never occurred to me that that would have been the good option. I have thought a lot about the many mornings and nights I sat with my dad on the kitchen floor, eating peanut butter sandwiches before bed, taking shots, checking sugars, trying to figure out that damn exchange system (whoever thought THAT was a good plan should try it!), moving from pig insulin to manmade, trying different kinds, getting the new “cool” blood sugar meter that was small enough to fit in a purse or a pocket…lots of hours, lots of years…and really, this non-working part of our bodies made us closer. It was nice to have someone around who got it, who you didn’t have to explain it to. It was a gift, really. I try to remember that, when I am having a hard day (or week, or month). Just like grief, chronic illness doesn’t go away. It changes with you over time. You wish it would leave sometimes and other times you cling to it. It is strange to realize that perhaps all those hours, those nights walking the driveway because my bloodsugar was too high or sitting on dads arms while mom fed him because his was too low or throwing a bowl of fruity pebbles at my then boyfriend and now husband’s head because I didn’t want to eat them…that maybe all of those things have actually HELPED me to make it through this cycle of grief. A solid set of long range coping skills, I guess, comes in handy. So, just like Bennie, I need to take a step back and find the good. The magic. So that my blues can become joyful…or at least hopeful and full of long life and good health. I think it might take a while. But, I suppose if I can survive diabetic camp and 24 doctors visits in 8 1/2 months and the loss of carefree innocence at age 9 due to that pesky little gland….I suppose if I can do all that AND survive what I have the last 7 months, I can probably make my way back on the A1C below 7.0 train. I think I can, I think I can, I think I can…

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Stuff and things…

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Working at a museum, I spend much of my day thinking about physical things…should we take them into the collection? If we already have them, do we need to keep them? How should we organize and arrange them? When should we move them and where? One of my co-workers said the other day, “I wonder how many times we will move the same things?”…which seems to be the trend of this job! Moving and sorting and sorting and moving and deciding which things are “artifacts” and which things are just “stuff” that could go away. This same thought process will need to happen at my house, eventually. With the expectation of life, we gather things…clothing and furniture and toys and bottles and quilts and decorations and changing pads and diapers and strollers and carseats and on and on and on. After a while, it seems it is all “stuff”…just more stuff that has come through the door and is taking up lots of room for someone who will take up hardly any room at all! It is sort of a crazy, materialistic, very American thing I think. The process of it is fun and happy and good. I liked it. All of it. The anticipation. The joy. The idea that YOUR little person was going to wear THIS very tiny, sweet, adorable shirt or pants or socks. The glee of that is an awesome thing.

When your child dies, you get MORE things. Cards and books and jewelry and plants and garden stones and candles and such. Now, you have a room (or a house) full of things for LIFE and a room (or a house) full of things for DEATH. How much STUFF can one person handle? It is a little overwhelming, the volume. It is beautiful in so many ways because each of those things has come in the door with meaning. From baby showers or in the mail from friends far away or from those dropping by to hug you in comfort. This makes it hard to decide, which of these things are “artifacts” that mean something to you and which are just more “stuff” that has no intrinsic value? I don’t know. I think about it. And my opinion of the things in my house has changed as time has gone by. Much of the perishable (baby wipes, bath products, etc) that had a time limit were given away right away. I am still finding things in my freezer that we haven’t eaten yet that were brought in that first month. The other day, I came across a innocuous plastic bag that had my water bottle and wrist band from the hospital. How had I missed that, after all these months? Probably because the piles have grown and I cannot decide. So I ignore. It’s been relatively effective so far. But perhaps not helpful! I did manage to buy some bins and pack up a lot of the death stuff…the funeral folders and cards and autopsy report and such…the things I don’t know if I’ll want but maybe…they can live in that bin for a while…or forever, really. One more bin won’t make that much different in a basement, right? Now, we are getting to the life stuff. What to do, what to do? Save it, because I could use it someday? Sort through and save some? Even if Bennie was living, his room would be much to full and would need sorting…because, like most first time moms, I overdid it a bit. So, maybe that’s the compromise? Get rid of some and keep some, until next year when I can do it again. Or, maybe get a matching blue bin and fill it and put it on the shelf next to the one full of death. Life and death in Rubbermaid totes on a basement shelf. Kind of poetic, right? I think so. I think as time goes by, it will be much like the “stuff” that we deem important as we grow…a box of letter and cards and knick knacks that sit in our parents closet or garage or attic or basement that starts as many and ends as one…one cardboard box or plastic bin that encapsulates our childhood. I guess really, this is not so very much different than that. The perspective helps, I think. The room, full of so much hope and happiness, then later so much despair, and now somewhere in between. Lots like turning a childhood room into a home office or a “spare” bedroom…just condensed to a shorter time. I am in no rush for it. But sometimes, when I walk by and the morning sun is flooding the windows and the blue walls sparkle, it gets me thinking about time and memory and the enormous value of place; stuff and things are just that…but space, space holds love and joy and LIFE. That, thankful, does not go away. Thank God for those blessings. They hold me up.
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