Head case

As I mentioned here, I have tried to blog before.  It didn’t work.  In my head it seems like such an easy thing to do.  Type out some thoughts, press publish.  I have lots and lots of things going on in my head at any given time, so it shouldn’t be hard to get some of them onto virtual paper.  But it is hard.  It is just one. more. thing.

In fact, everything is hard anymore.   There are days when I don’t understand this.  Why is it so hard for me?  What is wrong with me? Why does it seem that everyone else has it all together, and I just can’t pull it off?

Then there are days when I have clarity about the answers to those questions.  As for the last one, I know that everyone else doesn’t actually have it all together.  I suppose some people do, but I suspect most don’t.  I remind myself that from the outside, to those who don’t know me well, it actually looks like I have it all together.  Ha!

So on to the real questions.  Why is it so hard for me?  What is wrong with me?

I am in chronic pain.

I have pain in my head nearly every freaking day.  Seriously.  80 days out of the past 85.  Intensity varies, yes, but just about half the time (based on my daily headache journal) the headache is what I consider to be severe or very severe.  And the other half of the time varies between moderate and mild.  So to give a generous estimate right now, I have a “mild” headache approximately 25% of the time.  The other 75% of the time it is bad enough to interfere with my daily functioning, and sometimes it is bad enough to be downright debilitating.  And that’s with medicine.  So, yeah, things are hard for me.  Normal, everyday tasks can be difficult.  Sometimes insurmountable.

I am in pain while I get ready to go to work in the morning.  When I am working.  Smiling at everyone the best I can, pretending that nothing is wrong.  Seriously doing my best, but knowing some days that my best isn’t fast enough.  Isn’t efficient enough.  Knowing that I wasn’t able to concentrate as much as I should have, and that I would have been more productive if not in pain.  Knowing that although some people know that I am struggling, and that they care, when it comes right down to it I have a job to do whether I have a migraine or not.  Then there’s a fear of mine: that others might have the perception that I can’t handle it, that I can’t keep up, that I’m not doing a good enough job, because of the headaches.  I tend to view it as a weakness that needs to be concealed.

I am in pain when I rush home from work, hurrying so that Jerry can leave to get to work on time.  When he leaves and I have two littles who are depending on me to be what a mother should be.  To do what parents do.  I try hard to do it with joy, despite the pain.  To be in the moment, so that this time, their childhood, doesn’t pass me by before I know its gone.  I truly wish that Jerry did not work at night.  That we could split the tasks.  It sounds silly, but life is so much easier, so much more enjoyable on the nights when he is home.  Then I feel like I get to enjoy the things that we do, rather than just worry about checking them off my list.  Working during the day is not an option right now because of our childcare situation, but I look forward to someday.

Add food allergies into the mix.  If I don’t feel like cooking one night, don’t feel well enough to cook, I can’t just gather them up and take them out.  Or order in.  It’s not that easy when food allergies are involved, and dairy is particularly difficult to avoid in a restaurant.  And I don’t even have any family who can help take care of us.  Someone who can invite us over for dinner sometimes when things get especially overwhelming.  Somewhere to drop off the kids for an hour so that I can take medicine and lie down.  Or so that I can run an errand or get something done around the house.

Now let’s add diabetes…huge sigh.  What can I even say?  Highs, lows, sets, sensors, basals, boluses, blood sugar checks, carb counting, symptoms.  Constant decision making that has to happen no matter how badly my head hurts.  Things are never the same from one day to the next.  It can be exhausting.  When things aren’t going well, even despite all the hard work, it can be very defeating.  Even more defeating than the unrelenting pain in my head, because it is about Chase.  I can deal with my pain.  He shouldn’t have to deal with his.  The unfairness of it all hits hard sometimes.

Then I am in pain when the kids are in bed and I finally get to sit down for a second.  14 hours after my day started.  I am in pain on the weekends when we go out together as a family, whether to run errands or to do something fun.  I admit that I am not always pleasant, but I really do try, honestly I do.  I am in pain on the nights when Jerry is off and we try to enjoy our time together.  I am in pain on my wedding anniversary.  On vacations.  On birthdays and holidays.

My last appointment was July 21.  I started a new medication after that appointment, and it is obviously safe to say that it isn’t working.  I go again in three weeks.  Another new med will follow, I’m sure.  We’ll see what happens.  I suppose there’s nowhere to go but up.

 

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Chase’s fundraising page

We will be participating in the JDRF Walk to Cure Diabetes for the second year.  It is being held on September 28 at Hershey Park.  The boys are really looking forward to it!  We are not as organized this year as we were last year, and have not even begun fundraising. 😦  I did finally manage to get our pages personalized on the Walk website.  The following is the letter that we posted on Chase’s fundraising page:

Chase with tee ball trophy

Hi!  I’m Chase.  Thank you for visiting my personal Walk to Cure Diabetes fundraising page!   I was diagnosed with T1D more than three years ago, and I’m four years old.

I like superheros, monster trucks, swimming, tee ball, playgrounds, play dates, the beach, and amusement parks.  I like to run and jump, and can climb over anything in my way.  My favorite color is blue.  My favorite food is steak.  My brother is my best friend.  I think collecting things is fun, especially rocks, shells, and acorns.

I don’t like changing my set or my CGM.  I don’t like taking a break from playing (or sleeping) to treat a low blood sugar.  I don’t like feeling yucky when my blood sugar is out of range.

We check my blood sugar an average of 10 times a day.  My fingers are so tough that it rarely hurts, but sometimes I wish I didn’t have to do it.  We have to remember to take my pump off before I get in the pool, have a water balloon fight, or go to the waterpark.  We can’t go anywhere without my diabetes bag, which has my glucometer and other supplies I might need.  I can’t eat grapes out of the bowl or pretzels out of the bag, because all of my food must be weighed.  From the weight we figure out the carbohydrate count, and from the carb count we calculate the proper dosage of insulin for me.  I’m going to be good at math when I get to school!

I can eat anything anyone else can eat, I just need to calculate the carbs.  When you eat something, whether an apple or a candy bar, sugar enters your bloodstream and your body produces insulin to move that sugar into cells so that it can be converted  into energy. When I eat that same food, I need to give my body the insulin from an outside source (a syringe or my insulin pump).

There is nothing that can be done to prevent the development of Type 1 Diabetes.  It is an auto-immune disease in which the pancreas stops producing insulin, and there is no cure. I will not survive without regular infusions of insulin.

My family and I will be taking part in this year’s Walk to raise funds for the millions of people living with and affected by type 1 diabetes. The money we raise will help JDRF fund critical research to progressively remove the impact of T1D from people’s lives until no one has to fear developing the disease.

Please support me and donate to my Walk fundraising campaign. Your gift will make a difference for millions of people affected by this devastating, life-threatening disease. Won’t you please give to JDRF as generously as possible today?

Thank you for your support!

 

Eat and run

We try to visit a number of different places in the summer, which is one of the reasons I love summer.  Amusement parks, the zoo, baseball games, museums, the beach, etc.  Some of these places are within an hour from home, but others require a longer drive.  We love to combine the trips and stay overnight in a hotel.  For instance, last year we went to the Philadelphia Zoo one day, stayed at a hotel, and then went to the Please Touch Museum the next day.  The kids think that staying in a hotel is really pretty cool, especially if there is an indoor pool.

This year I am finding it more of a strain than usual.  This is due mainly to the food allergies.  We have to pack so much food just to go somewhere for one day, so two or three is feeling overwhelming to me at the moment. There is also a lot of research that goes into planning the trip, looking for vegan restaurants in the area, trying to determine if there are safe options at our destination, etc.  We try to pack something for every meal and every snack (and they seem to snack endlessly).  Sometimes we get lucky and find food that we can eat, but we can’t completely count on it, so we have to be prepared.

Unfamiliar restaurants are pretty much off-limits; we have had too many bad, scary experiences.  There have been times that we have called ahead or Jerry has gone earlier in the day, talked to the owner and chef, been assured of items/food prep that are safe, and then things don’t turn out as we’ve been told they would.

Once, after all of that preparation, including an in-person visit by Jerry to the owner and chef, our server (thankfully) recognized that what we were told to order actually contained dairy in the breading.  After she confirmed that with the chef (yes, the same one who told Jerry that it was safe to order in the first place), we thought that the crisis  had been averted.  We ordered something else (a plain chicken breast cooked in olive oil in a separate, freshly cleaned pan, with plain, steamed broccoli) only to have the broccoli be served with butter on it.  Thank God I had licked my finger after cutting the piece of chicken for him, before Brady even had a chance to touch his food.  I have never trusted an unfamiliar restaurant or chef again, unless it is a completely vegan restaurant.  Eating out is seriously stressful, and is rare for us now.

Diabetes is no picnic either, but it is not nearly as difficult to travel with as food allergies.  We just have to make sure we always have our “diabetes bag” with us.  It contains carbs for lows (juice boxes, fruit twists, fruit snacks, glucose tablets, smarties, etc.); glucagon; an extra infusion set and reservoir for the insulin pump, in case the one he’s wearing gets pulled out or malfunctions; syringes, again, in case the pump malfunctions, or in case he develops ketones; ketostix, to check for ketones; and first aid type items, including alcohol swabs, adhesive remover, tissues, neosporin, band-aids, and extra epi-pens.  And, of course, his glucometer.  If we are traveling anywhere further than an hour or two, we take insulin too.  If we will be gone overnight, we also add even more infusion sets and reservoirs.  There’s also some extras like a spare pair of undies (better safe than sorry), a tide-to-go pen for stains (have used it several times, and not just for the littles), and some other random tidbits.

As far as carb counts of foods in a restaurant, we can estimate serving size pretty well, and sometimes we even bring our food scale along in the bag.  We can look up carbs with great resources like CalorieKing and MyFitnessPal, or sometimes even the restaurant website.

So I’m trying to work up the enthusiasm to pack food for our next short trip. We’ve been doing it for six years now and I think I’ve established a pretty good system, but I’m always looking for ways to make it different or easier.  Anybody have any good tips?

 

Calgon take me away

I need a vacation.  A month-long stay on a remote Caribbean island would be right up my alley, but I’d be perfectly happy with a weekend at the Jersey shore.  Actually, we just returned from a few days at the beach.  While it was fun, it just wasn’t enough this year.  I want more.  I want grown-up time.  I want to do something for me.  For my marriage.

I sometimes feel trapped.  I feel so guilty even putting that in writing.  I have happy, healthy children who are a blessing.  It is so much fun to take them places.  There is nothing like seeing the magic and wonder of an experience through your children.  Truly.  It is such a joy to see their joy.

But I would like to be able to go somewhere without them once in a while.  Without them and with my husband.  Just the two of us.  I know people do this.  I’ve heard about it.  I’ve read about it.  I believe it’s true, not just an urban legend.

This seemingly simple and reasonable request is out of reach for us.  We just don’t have child care.  We don’t have much opportunity to go out without them anyway, due to our work schedules.  Finding a sitter (I’ve looked on care.com) would not be an easy task.  Going out so infrequently does not allow us to get to know a stranger enough to trust them with our kids’ lives.  And what caregiver is going to want to work for us anyway when we can give them only a handful of gigs a year?  Finances are an issue too, so we can’t just decide to solve that problem by going out more frequently, even if we could find the time.

We’ve left our kids a handful of times, for up to two hours, usually less, and we have almost always been in the same town.  More than half the time we have waited until they went to bed (then came home in time for an 11 p.m. or midnight check).  The furthest away we’ve been is 15 minutes, but 5 is more common.  The rare time that we’ve asked for help during the day we have always been taking care of something that needs taking care of (e.g., 504 meetings at school, parent-teacher conferences, a funeral, a medical appointment we both needed to attend, etc.), rather than having a romantic rendezvous.

We do our best to carve out time for the two of us when we can.

We put the kids to bed early sometimes, get take-out and wine, and rent a movie or watch our favorite tv shows. Every so often we go to Wegmans and eat a quick lunch in the cafe while the kids are at W-kids. We don’t live near an Ikea, but we’ve been to the nearest one twice in the past year and were able to put the kids in Smalland while we shopped for an hour. But we worry about blood sugar while we are gone (and with good reason, since we’ve come back to find him low a couple of times.  Thankfully, neither W-kids nor Smalland allow food or drinks, so we don’t have to worry about food allergies too).

But frankly, these things just aren’t cutting it anymore.  Let me dream, shall we?

Yes, I would love, love, love a beach getaway, but I’m talking even simpler than that.  I’m just talking about a movie, a play, or a wine trip.  A dinner that can take place at a restaurant in a different town, that starts before 9 p.m. and from which we don’t have to return until we feel like it.  I would LOVE to go to a local outdoor adventure park that has suspended bridges, zip lines, swinging logs, etc. (to which, btw, we have free tickets, because they come included as a perk for purchasing water park season passes…for the fourth year in a row they will go unused).

Still dreaming, I would love to have a date night (or day) scheduled to occur regularly.  Once a month would be amazing, but even once every other month.

And while I’m on a roll, I want to go somewhere without taking food with us.  Without having to plan ahead for every single thing that will go into our mouths.  Once in a while I want to feel like we have options, or like we can be somewhat spontaneous.

It has been six years since we spent a night away from the kids (and there was just one kid then).  I can count on one hand the number of real date nights that we’ve have had in the past four years.  Seriously.  One hand…four years.

We love our children.  But we love each other too, and we just want a chance to go out together.  To celebrate our relationship, to nurture it.  How will it survive if we can’t take care of it?

 

 

Mirror, mirror on the wall

One day, a couple of years ago now, I looked in the mirror and was genuinely surprised to see the reflection peering back at me.  Sure, I look in the mirror at some point every day, but that day I really looked.  I paid attention to what I saw.

I was not the person I remember.  I was not even the person I was expecting.  The simple aging of my face and body was quite a surprise in and of itself.  Of course I realize that I’m aging.  I knew that at 37 (at the time) I would not look the same as I did when I was 30; however, aging seems to have sped up in the years since diabetes joined our family.

But it goes beyond the simple physical changes.  When I looked into my eyes I did not recognize myself.  I am not who I used to be.

I don’t really know how to explain the effect of years of chronic pain.  Years of managing food allergies.  Years of watching my toddler/preschooler live with diabetes, doing my absolute best to take care of him, to manage his blood sugar, only to know that my best may not be good enough for this vicious disease.

Sometimes I feel grateful, hopeful, excited.  But for years I have been tired, sometimes bone-crushingly exhausted.  I am often discouraged, angry, sad, jealous of others, resentful, etc.  The mirror showed me how I’ve changed because of that.

All parents are tasked with providing the best possible care to their children.  I believe the vast majority take that responsibility, that gift, very seriously.  We all want our kids to be safe, healthy, and happy.  We want them to grow into responsible, trustworthy, independent, contributing members of society, while still being safe, healthy, and happy adults.  I’m no different than all of those other parents out there.  I am trying to reach the same destination as everyone else, but the roads that we have to travel are fraught with more twists and turns, more rough terrain, and more dead ends.

Today I am feeling sad.  I just recently returned to work after a six month sabbatical.  Is that why I am feeling more beaten-down than usual, reminded of how surprised I was by the defeated reflection in the mirror that day?

Or is it because diabetes has been particularly hard on us for the past week or so?  Or because we have concerns about preschool next year for Chase, who doesn’t currently have a nurse to accompany him (his nurse from this year left the agency.  It wasn’t an easy position for them to fill in the first place, because he only goes to school 9 hours a week).

Or is it because we have multiple concerns regarding next school year for Brady, in terms of the school’s management of food allergies?  We didn’t reach an agreement with the school about the content of his 504 at our end of the year meeting, so things are still in limbo.

So much to work out for both of them to be safe and included, and the summer passes by quickly.

I’m sad.  I’m stressed.  I’m arguing with Jerry, and I’m impatient with the boys.  I need to snap out of it.  First I need to figure out how.

 

 

Three and counting.

Three years ago today Chase was diagnosed.  While we celebrate our country’s independence, the day also marks our son’s dependence on insulin.

A lot happens in three years:

Chase has had approximately 9000-10,000 BG checks, 2700-3000 injections (the vast majority within the first 14 months), 226 set changes, 5 sensor insertions, and 12 trips for blood work.  That’s a whole lot of needles!  More than I even realized.

I couldn’t even begin to guess how many middle-of-the-night juice boxes he has sleepily consumed to treat a low.

His A1C went from 12.5 to 8.1.  We were pretty pleased with the 8.1, because it was at the lower end of the goal set by his endocrinologist.  However, new ADA guidelines show that we still have more work to do.

He loves to see someone with a pump, and was excited about the American Ninja Warrior athlete, Kyle Cochran, who has Type 1.

He looks forward to the next JDRF Walk to Cure Diabetes. He loves when one of our team members wears their CHASEing a Cure shirt.  He loves to wear his.

He fluently speaks diabetes: bolus, high, low, carbs, glucagon, ketones, set change, pump, active insulin, predicted low, etc.

He calls himself a “careful diabetes kid.”  I don’t know where it came from, because we’ve never called him a diabetes kid. Not ever.  I very, very rarely even say that he is a diabetic, just that he has diabetes.  But in any case, that’s what he says, and it seems to make him proud. 🙂

He is also proud that his fingers are strong.  Brady was marveling at how it does not hurt Chase to have his finger poked for a BG check.  We were discussing that it would hurt us, but it doesn’t hurt Chase because his fingers are stronger than ours.  He likes that idea.

He has grown 10 inches, and gained 13 pounds.

He has gone from dangerously ill to wonderfully healthy.  He is well and he is happy.

Three years ago our lives changed.  Quickly, completely, and irreparably.  I must admit that I underestimated the change that was to come.  I knew it was going to be drastic and pervasive, but I suppose I thought that it would settle down.  I guess I thought that a new normal would be carved out.  Did I think that I would eventually be well rested again?  I’m too tired to remember.

I suppose I thought that once we figured out the correct dosage for his long-acting insulin and the correct ratios of carbs to fast-acting insulin that everything would be pretty easy to manage.

I didn’t realize that the “right” ratios are not only elusive, but simply nonexistent.  That as soon as things were tweaked to juuussst the right settings, something changes.

I didn’t know that we could eat the exact same food, engage in the exact same amount of physical activity, and get drastically different results from one day to the next.

I didn’t know that we would see highs in the 500s and lows in the 20s.

I didn’t know that diabetes is often inconsistent, and downright crazy at times.

I didn’t know that my relationships with others would change, and that I would learn so much about other people through Chase’s diabetes.

I didn’t know that even three years later I would still think about diabetes several times a day an hour.

Yes, diabetes changed our lives.  It has daily impact on his brother’s life, his father’s life, and my life.  It has obviously changed Chase’s life, and this is not the life we wanted him to have.

But he HAS a life.  A good life. A happy life.  Three years ago diabetes almost took that away from him.  Today, and every July 4th, we will celebrate his life.  We will celebrate how far we have come and how far we will continue to go.

Happy Diaversary Chase!