Tag Archives: auto-immune diseases

Seasons

Three months; twelve weeks; eighty-four days; two-thousand sixteen hours; one hundred twenty thousand nine hundred sixty minutes; seven million two hundred fifty-seven thousand six hundred seconds–how do you measure a quarter of a year? Even though I loved it, this post has nothing to do with the Broadway musical “Rent” (it was the first show I ever saw on Broadway, and these words resemble, albeit badly, words from one of my favorite songs from the musical, “Seasons of Love”). But diabetes has nothing to do with “Rent”. “Rent” is the story of a group of young people trying to survive under the shadow of a horrible, incurable disease…….hmmmm.

Medium was diagnosed with type I diabetes three months ago, in the winter. Now it is spring. A season seems an appropriate amount of time time. Appropriate amount of time for what? I feel like people think I should be “over it” already. That enough time has passed that things should just be back to normal now. That a season should be enough time to figure out how to live our new lives and just accept that “life goes on”. And it does. Life does go on. The cool, rainy afternoons of spring will, no doubt, make room for the hot, lazy days of summer. And certain things have gotten easier. I know how to count carbs, I know how to handle lows, and I can change out the reservoir set on Medium’s pump in less than 5 minutes. Diabetes doesn’t consume my every waking moment (and most of the sleeping ones too) anymore.

But you know what? No matter how many winters melt into spring or summers fade into fall, Medium doesn’t get better. If anything, he gets worse. Elevated blood sugars over time will wreak havoc on his body in the years to come. No matter how much time passes, we will still have to check his blood sugar 10 or more times a day, we will still have to count carbs and deliver insulin with every meal, we will still have to check his blood sugar overnight (or worry about him), we will still have to see the endocrinologist every 3 months, we will still have to bring snacks and rescue supplies with us wherever we go, we will still have to teach every caregiver, teacher, friend, school nurse, or coach he ever comes in contact with about his disease and what to do in case of an emergency. It never ends. The worry, the fear for his long-term health, it takes it’s toll on us.  All of us. We are exhausted; mentally, emotionally; physically. The stress it has put on this family is immeasurable, yet palpable.

But most people think that we are “fine”. We are still going to work every day, the kids go to school and keep up with their activities. We are going through the motions. Everything seems “fine”. We don’t really have a choice.

But we are not “fine”.

We will never be “fine” when the health and well-being of one of our kids is threatened. So until there is a cure, we are not “fine”.

So feel free to keep asking us how we are doing, or if there is anything you can help us with. Feel free to continue to pray for us and for a cure. Remember that as the seasons change, our efforts to keep our son healthy don’t. Feel free to let your heart ache for Medium and what he has to go through.  Because no kid should ever have his life threatened and his innocence ripped from him. And no family should have to helplessly stand by and watch it happen.

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Am I Weird?

I was talking with a coworker of mine today who is a nurse. She mentioned that when she was 18 her 9 year-old sister was diagnosed with T1D and she talked about helping take care of her. Another coworker asked if that is what made her want to be a nurse. She said that it was part of the reason, the other reason was that her own daughter was diagnosed with Leukemia when she was 7 and that taking care of both her sister and her daughter made her realize that nursing was her calling. And then she said something that struck me as odd. She said that taking care of a chronically ill child changes you, it makes you weird.

Now, I agree with the first part of that statement. It has not even been three full months since Medium was diagnosed, but I am definitely a different person. Most notably, I am exhausted. Actually, I am beyond exhausted. I am exhausted on steroids. I am almost non-functioning exhausted. I keep dragging my butt in to work every morning and saying, out loud, as if anyone really cares, “I don’t know how much longer I can keep up this pace”. I sit at my desk and think about whether I think I can make it through the whole day without going to the parking lot on my lunch break and taking a nap in my car. I pump myself full of caffeine and I trudge through the day. It feels like I am walking through quick-sand, like I am in slow motion. Somehow I am making it work, keeping up with my responsibilities at work and, for the most part, I feel I am pulling my weight. I know that I am capable of doing more, being sharper, going above and beyond. But I don’t even feel bad that I’m not because I am giving all I can right now. I am all tapped out. That which doesn’t kill us makes us stronger–if that is true, I am IRON WOMAN. But I still don’t get what she means by the “it makes you weird” part.

I don’t say these things so I can get sympathy. I am not the only tired woman in the world, not by a long shot. And I am keenly aware of how, even though things are pretty rough right now, they could be so much worse. On my daily prayer list are so many other families that are going through far worse. But the fact remains, that right now, life is hard. And I am trying my best to get through with my sanity and dignity in tact (incidentally,bursting into your bosses office and announcing that you have to leave because you forgot to pick up one of your children does not help this plight).

Besides being beyond exhausted, I have changed in other ways, too. I carry needles and glucose tabs everywhere I go, I can divide by 30 in the blink of an eye, I know the carb count of a plethora of foods, I stab my child with needles frequently, I no longer make jokes about being in a diabetic coma, I buy home hemoglobin A1C tests, I have insulin pens in my butter dish in the fridge, I know what basal and bolus mean, I regularly inspect my son’s feet, I stab my non-diabetic children with needles on occasion, I have Skittles and Kool-Aid in my underwear drawer, there are smears of blood all over my son’s sheets and some other random places around my house……

Huh, I think I know what my coworker meant now.

At least I don’t have a zipper on my tongue.

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Reason # 1,723 Why I Hate Diabetes

It is robbing me of my brain.

Our diabetes educator keeps talking about not letting diabetes run our life, but rather work our life around diabetes. Well, that is really hard to do…..especially for a control freak like me.  Caring for a child with a chronic illness is, in short, exhausting. Round the clock blood sugar checks, carb counting at every meal or snack, lots of math….I hate math.  Having to always be two steps ahead of diabetes is draining. Boy scouts would make good diabetics, you always have to be prepared.  Prepared for highs, prepared for lows, prepared for pump malfunctions, etc. And then there’s the constant worry. They have a continuous glucose monitor for diabetics, they should have a continuous worry monitor for us moms of diabetics that automatically dispenses Xanax, caffeine, wine….whatever your drug of choice is based on your reading.  Yeah, I’m going to invent that….in my spare time.

But that invention will have to wait.  I can barely remember to put shoes on before I leave the house these days. I forgot to account for Small after school one day and had to leave work abruptly and race home to meet the bus (overlooked the fact that no one was going to be home to get him off the bus). I have mailed bills and forgot to put stamps on them. I forgot about a meeting at work. Small has not had his library book on library day, ever this year. (Okay that one I can’t blame on diabetes, it’s been happening since the beginning of school.)

But today was the mother of all blunders. Today I did something that twelve years ago when I was a naive new mother, I would have been downright appalled at witnessing. (Although it should be noted that as a naive new mother, lots of things I witnessed of other parents appalled me. Like picking up a pacifier that had fallen on the ground and putting it back in the baby’s mouth without boiling it first, or letting a 2 and 4 year-old have soda, or leaving a restaurant table looking like nuclear war had descended upon it during your dinner with your children–all things that I eventually did, when I wasn’t so naive anymore!)

Today I forgot to be the Easter bunny. (Enter horrified gasps here.)

Yep, not my proudest moment as a mother hearing my 5 year-old say, upon realizing the Easter bunny stiffed him, “I hate the Easter Bunny!”

How the hell could I forget to be the Easter bunny?  And I didn’t just forget to put the stuff out, I didn’t even buy anything.  Nothing. Nada. Zip, zero, zilch.

Now, you should know, Large performed as Edmund in Narnia the Musical at the beautiful, brand-new Kauffman Center for the Perfoming Arts this weekend, (which, coincidentally, is one of my proudest moments as a mother) so I have been a little pre-occupied with that, but still. How the hell do you forget to be the Easter bunny?

I’ll tell you how.

Diabetes.

There is only so much room in this noggin of mine to worry and remember things and now that diabetes has moved it’s big butt in, there ain’t much room for anything else.

But in true Warrior Mom fashion, I (and CVS) saved Easter.  The Easter bunny was running late this year and came by while we were at church. And I will say, the Easter bunny did a good job of putting together diabetic friendly Easter baskets for the whole family. Sure there was some chocolate and some Peeps (I’m sure I will regret that one), but there was also sugar free gum, lots of nuts, beef jerky and cheese and cool bottled water and Crystal light.

So you can suck it, diabetes. I win this one!

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No, This Is Not A Nike Commercial

I want you help the Schuhmacher’s.  I know, pretty bold, right?  You are thinking to yourself, “I don’t even know the Schuhmacher’s, why would I want to help them?”

I don’t know them either.

Meri, the matriarch of the family, writes a blog that I read.

She has 4 boys.

Three of them have type 1 diabetes.

She has one husband.

He has cancer.

Enough said.

Follow this family’s journey at www.ourdiabeticlife.com, or through this link:

You don’t have to help them financially.  Say a prayer, send positive thoughts and energy, meditate, light a candle for them.  Do it in honor of someone you know that has been affected by cancer.  Do it in honor of your healthy kids.  Do it because a little more love headed their way, cannot hurt.  Just do it.

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This Is Not A Joke

I’ve learned a couple of things about blogging in the last month.

#1  It’s kind of a lot of pressure once you know people may (or may not) be reading what you are writing.

#2  I cannot write when I am exhausted and stressed (which coincidentally is all the time now).  This past week has been especially bad as I have been working crazy hours all over the city supporting a go-live for work and I was on-call this week.  So I could barely form spoken sentences, let alone string together a series of meaningful, coherent words for a post.  Even as I write this my eyes are feeling heavy.  Small has been trying to come down with something for a few days and last night he succeeded.  He came into our room at 3 am barking like a seal and on fire.  This is exactly the same thing he had 2 months ago when Medium was diagnosed with T1D.  In fact, the only reason I took Medium to the doctor the day he was diagnosed was because I was already going with Small so I thought I would have this little “peeing” problem looked at.

Now Small is sick again.  And illness in this household is a whole new animal.  For starters, when Medium gets sick now we have to refer to a new chapter in our diabetes book called “Sick Day Management”.  I won’t go into details, because frankly, it confuses and scares me and I am floating down the river of denial thinking he will just never get sick and we won’t have to deal with it.  Think about it, if Medium gets insulin to cover food but then vomits the food, now he has too much insulin.  But if you stop giving him insulin altogether he will go into DKA (which if you remember is B.A.D. bad).  So what do you do?  Other illnesses jack with BG’s too, usually make you run high so you have to make adjustments in your insulin doses and constantly check ketones to make sure you are not going into the dreaded DKA.  It’s just a mess I don’t want to deal with. So, if I pretend it won’t happen then it won’t, right?

And as scary as it is for Medium to get sick, I think what scares me more right now is when either Large or Small gets sick.  It is believed that a person is genetically predisposed to developing T1D and that it happens as a result of the body’s immune system being called upon to fight an illness in the body and then it also decides that the islet cells (the cells that produce insulin) are intruders too so it attacks them.  When enough of those islet cells are killed, very little insulin is being produced and the next thing you know, you are very sick and someone in a white coat gives you the life-changing diagnosis of type 1 diabetes.  But when the body decides to do this, no one knows.  So now when Large or Small gets sick, I am freaking out wondering if this is the illness that is going to send their immune systems to battle with the wrong enemy.

Large and Small are more likely to develop T1D now that their brother has been diagnosed.  There is no way to know for sure if they will ever develop it.  I mentioned in an earlier post that they can test them for the auto-antibodies.  If they test positive for them, then it is likely they will develop T1D at some point in their lives.  If they test negative for them, it means that, for right now, they are not likely to develop T1D.  But they could develop the auto-antibodies at any time so a”no” isn’t really a “no”, it’s more of a “not right now”.  So I still have not decided if I am going to have them tested.  I know I could not handle finding out one of them tested positive right now, so for now, we are not testing.  Maybe someday, when Medium’s diabetes is like second nature to us, I will feel strong enough to hear the news, whichever way it goes.  But now is not that day.

So in a way, I worry less about Medium.  His cards are on the table.  We know what he has and we are dealing with it.  With the other two it is like a riddle that I have to solve.  Will they get it?  If so, when?  Can we prevent it?  Will we be ready for it?  Will we catch it early or will they get really sick?  How will they handle it? Are they worried that they might get it?  How could I possibly handle another child with this horrible disease?  This is not a joke, this is my life. Someone solve the riddle for me.

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