Tag Archives: immune system

Jun 25 2012
9 Comments
It Ain't Always Pretty...But It's My Life

WARNING! Rated R Due To Explicit Language!

It is widely accepted that people who use foul language are uneducated and just can’t come up with other words.

That’s just not fucking true.

I am an intelligent, college-educated person who knows a plethora words. And I never used to use curse words very much. First of all, my parents didn’t use them, and since children learn from those around them, I just didn’t use them. (So sorry mom, but I suggest you stop reading this right now. If you choose to read on, please don’t be offended or think less of me :))  But the older I get, I find myself using them more and more.

Well, that’s what I thought.

Turns out it is the angrier I get, the more I use them.

And let me tell you people, I am one angry son-of-a-bitch these days. Turns out that I have made it to a new level of anger and emotion and the only way I know how to express that is through profanity. So I apologize, but I’ve just got to get this shit out!

And who do I have to thank for that?

Fucking diabetes.

Fucking diabetes moved it’s fat ass into my life and has a choke-hold on my sanity. I am trying my best to not let it get the best of me, but I feel like I am drowning. I am effing loosing it!

My marriage is suffering, my relationship with my kids is suffering, my finances are suffering, my work is suffering….my sanity is suffering. I just cannot be every fucking thing to every fucking person in my life right now, and I FUCKING HATE IT! I am trying to do everything I did before fucking diabetes took over my life, and on top of it keep my son’s blood sugars low enough that he won’t get sick and die but high enough that he won’t get sick and die. I have a small window between death and death that I have to keep my son, at all times, whilst still being a good wife, mother, sister, aunt, cousin,  friend and employee.

And the thing is, no one else really gets it. My husband doesn’t get it, my kids don’t get it, my friends don’t get it, my coworkers don’t get it, my boss doesn’t get it. I’m not saying that some of them don’t try, but they just can’t know how I feel and what I am going through and that is so lonely and scary. Even other D-parents don’t know exactly what I am going through because, as similar as our journey’s are, they are each individual. People can empathize, but it is a journey that, ultimately, I have to walk alone. And what is really so heart-breaking about that is the reality that it is the same thing for Medium. I cannot know what he is going through or will go through as a person with diabetes. I can empathize, but he has to walk that journey alone, and that scares the shit out of me. I just want so fucking badly to take it from him.

I will be right beside him every step of the way, but it is his journey.

The control freak mother in me just cannot accept that.

The mother in me cannot accept that he has to count every carbohydrate that he eats, that he has to stab himself 10 times a day, that he cannot have a Gatorade after soccer with all of his friends, that as he gets older his insulin needs are going to change and undoubtedly he is going to have severe highs and lows because of it and he will feel like shit, that he will have to be very careful about drinking alcohol when he is in college, that he will have to find someone willing to take all of this on when falling in love and finding a spouse and that he will have to worry that he will pass this dreaded disease on to his own children one day. AND THERE IS NOT A FUCKING THING THAT I CAN DO ABOUT IT!!!

I just cannot accept that.

But life goes on. And don’t worry, no one has to put me on suicide watch. I just needed to get that out. I know it wasn’t very couth, or professional or lady-like or mature, but it was real.

And at the end of the day, that is all I have.

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May 30 2012
3 Comments
It Ain't Always Pretty...But It's My Life

The Honeymoon Is Over

“The Honeymoon Period.”

Sounds like a good thing, right? Who doesn’t love a honeymoon? Me, that ‘s who. I assure you this is not the “take romantic walks on the beach” kind of honeymoon.

Let me give you a little background. (Remember, I am not a doctor, even though my initials are DR).

So, your body has decided that it is going to now attack the islet cells on your pancreas that produce insulin, thus rendering you diabetic. But your body doesn’t go out in one day and kill all of the cells. It starts attacking them and they systematically die off. When enough of them have been destroyed, the glucose is no longer being carried out of the bloodstream and into the cells to be used for energy, so you gradually start showing symptoms. Everyday, more islet cells are destroyed. Eventually, the insulin that is still working is over-worked and decides to go on strike. It can’t keep up, so it stops working. So one day your islet cells are producing insulin, and seemingly the next day (it doesn’t really happen that quickly), many of the cells are killed and the ones that aren’t killed, are refusing to work.  So boom! Virtually no insulin working in your body and you get really sick, really fast (DKA).

Not every person who is diagnosed with type 1 diabetes goes into DKA. In fact, Medium was one of those who didn’t. I like to think it was because of my keen awareness and attention to detail that I was able to identify his symptoms fairly early on, but who really knows. Nonetheless, the staff in the ER kept commenting on how kids usually are so much sicker than Medium when they come in. It was almost as if it wasn’t really happening because there didn’t really seem to be a real emergency, even though his blood glucose level was 565 mg/dL. (A healthy blood sugar level is between 70 mg/dL and 140 mg/dL). Everyone was very chill, everyone except Medium’s pediatrician whom I am sure was still sitting back at his office with his mouth agape. (He too didn’t think Medium looked sick and was quite shocked at the results in the office). As a former ER worker, I almost felt like I needed to apologize for disappointing them with our drama-free presentation!

But I digress.

Back to the honeymoon.

So, you’ve now been diagnosed with type 1 diabetes. (We aren’t even going to go into how sucky that is in and of itself, you’ve heard enough of those rants from me). And the treatment (not cure) for this diagnosis is insulin. So you start giving yourself synthetic insulin via injections into the subcutaneous tissue of your arm, thigh, belly or buttock and now your body has what it needs to carry the glucose, that comes from the foods you eat, out of your bloodstream and into your cells to be used for energy. Yay. (Please notice the purposeful exclusion of an exclamation point here. While all diabetics and their caregivers are ever-so-grateful for the invention of synthetic insulin, it is not a cure. So, until there is a cure, you get no exclamation point. Sorry.)

But guess what? Remember that insulin that your own body was still producing but had gone on strike? Well, it has accepted the terms of the negotiated settlement and has now agreed to start working again, now that it has the help of the synthetic insulin. So, you have synthetic insulin and your own insulin, and guess what? Now you have too much insulin. And guess what? Too much insulin will kill you. Yeah, this would explain my love-hate relationship with insulin. The very thing that my son needs to stay alive, can also kill him. Super.

This period of time right after diagnosis when your body’s own insulin starts working again, is called the Honeymoon Period.  (Hmmm, seems I could have gotten to this point faster, oh well.) The problem with the honeymoon period is that you don’t know when your body is going to kick out some insulin and how much it is going to kick out, so you are on the blood sugar roller coaster. Never really knowing how much synthetic insulin to give yourself. You do your best to come up with an insulin to carbohydrate ratio, but the hard truth is that, sometimes, you get it wrong.

While there is currently research being done on preserving those islet cells in those newly diagnosed with T1D, the outcome remains the same. Eventually all of those cells are going to be destroyed. So I have been saying all along, “just die already islet cells!” That way we don’t have to guess anymore how much insulin Medium really has working for him.

Well friends, I think the honeymoon is over. His blood sugars have gone up across the board. And I thought I would be relieved when this finally happened, but I am surprisingly saddened by it. I guess it just puts the proverbial nail in the proverbial coffin. The death of his pancreas.

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May 20 2012
3 Comments
It Ain't Always Pretty...But It's My Life

Did I Ever Tell You You’re My Hero?

Today’s theme: Diabetes Hero

“Let’s end our week on a high note and blog about our “Diabetes Hero”. It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3. It might be a fabulous endo or CDE. It could be a d-celebrity or role-model. It could be another DOC member. It’s up to you – who is your Diabetes Hero??”

All of the above.

Really.

I am almost 4 months into my journey as a mother of a child with diabetes, and I can ‘t believe how many amazing new people I now know because of it. (And some people for whom I have known a long time but now have a new-found respect).

We have an AMAZING diabetes educator. I wish I could just keep him in my pocket and reference his brain whenever I need to. Medium’s pediatrician and endo are awesome too. All of the staff at Children’s Mercy Hospital are at the top of their game.

Medium’s school nurse has gone above and beyond in making me feel at ease while he is at school all day long.  His teacher, the principal, all the school staff have rocked.

A woman, whom I had not met in person until today actually, hooked us up with a scholarship for Medium to go to diabetes camp this summer. How awesome is that?

The women of the DOC that I have met this week alone through Diabetes Blog Week have been nothing short of inspirational. And not just the one’s who have multiple children with T1D and husbands with cancer and other children with horrible diseases besides T1D, all of the women who are brave enough to put their inner-most thoughts and feelings; the good, the bad and the ugly, out there for the whole world to see and learn from.

My sister-in-law who, although she has lived with this disease for close to 40 years, doesn’t let diabetes define her. I have known her for twenty years and only in the last 4 months have I realized what all she has had to endure. And things are so much easier now! Even though my own sister-in-law has T1D, I never knew how serious or complicated it was because she made it look easy. It is a part of who she is, it is not her identity. She is a very creative, artistic person and is a great writer. She has always worked in publishing, and now she works for the ADA. She is a huge advocate for diabetes and is an amazing role model to Medium of what it looks like to live with type 1 diabetes. (Plus she doesn’t make me feel bad that I don’t change the lancet on the poker as often as I should!)

My mother-in-law, who went through everything that I am going through, 40 years ago when they used pig insulin and didn’t have glucometers, and didn’t even know what a healthy blood sugar was. I know that if she was able to raise my sister-in-law to be the smart, creative, kind, successful person that she is with virtually no tools to help her, then I can certainly do the same now with all of the advanced technology out there.

Everyone who gets up every morning and goes to work or school, who cleans their house and does laundry, takes care of their kids, runs corporations, plays professional sports, contributes to society and doesn’t let this disease tell them they can’t.

But most of all, my Medium. He does not complain. He does not ask why. He counts his carbs. He gave himself shots. He sticks a needle in his finger 10 times a day without so much as a whimper. He knows how to navigate his insulin pump. He gets A’s in school. He plays soccer. He plays basketball. He plays football. He loves his dog. He tolerates his brothers. He hates taking showers. He loves peanut butter crackers. He gives the best hugs. He is 10 years-old and is scared about what diabetes is going to do to his life.

But you wouldn’t know it.

He is my true hero.

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May 16 2012
2 Comments
It Ain't Always Pretty...But It's My Life

I Am Kicking Ass Over Here!

Today’s theme: One Thing To Improve

“Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at. Today let’s look at the flip-side. We probably all have one thing we could try to do better. Why not make today the day we start working on it. No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!”

This week has been so busy with school year-end activities: field trips, awards ceremonies, concerts and the ever-so-prestigious-and-totally-necessary (enter eye-roll) Pre-School graduation (hey, I am all for celebrating my kids and their accomplishments, this is just one that I think is a little silly and self-indulging, but what the hell….) that I have not been able to get my posts for D-Blog Week up until almost 11 p.m. We were done with all activities by 7:00 tonight so I thought I would be able to post sooner but alas, here I am, the late night poster again. But the reason for my tardy post is a good one. I have been overwhelmed with the amazing and totally supportive comments from all of my new friends! Just think, on Monday, no D-friends. Two days later, so many I have lost count! What an amazing community that is the DOC! Someone said it is the greatest club you never wanted to be a part of! Ain’t that the truth! I have never been so easily accepted into a group before. If you have or care for someone who has diabetes, then you are in, and in with love! Simply amazing!

Well, after all that sticky-sweet (pun intended) talk, it’s time to trash myself. I told you yesterday that I am much more comfortable at finding my faults. Actually I don’t have to find them at all, rather I try to hide them. Sigh.

So grab yourself a cup of coffee, (or vodka, I don’t judge) and pull up a comfy chair because here goes….

I need to be a better, wife, mom, sister and daughter. My family bears the brunt of most of my flaws.

I need to eat better, exercise and loose weight.

I need to stop buying bags and purses.

I am addicted to McDonald’s fountain diet Coke.

Oh wait, this is supposed to be something I could improve on related to my son’s diabetes…..sorry, I am so well aware of my flaws that they just roll off the tongue!

Hmmmm…….let’s see….something to improve on….um….well, there is….no. Well, what about….huh, no. Okay, okay how about…. hmmm……well this is awkward. I can’t really think of anything. It’s ironic. I am keenly aware of all of my personal faults, but when it comes to Medium’s diabetes, I AM ALL OVER THIS SHIT!!! Don’t get me wrong, I make mistakes, there are too many moving parts of diabetes care for even the long-time veterans to not make a mistake now again, but for a rookie such as myself, I pretty much ROCK! (Anyone else find it interesting that in the post where I was supposed to praise myself, I could barely do it, but here where I am supposed to call myself out on something I am calling myself a ROCK STAR?) But seriously, a carbohydrate doesn’t enter Medium’s body without me knowing about it, we have test strips, glucose tabs and snacks with us at all times, we have glucometers and cake gel in every level of our house and in both cars, I download Medium’s pump and pour over his numbers every 3-4 days, I buy home A1c kits so I won’t have to wait 3 months to know how he is really doing, I talk to the school nurse daily. Actually at Medium’s three month check up the other day the diabetes educator was almost irritated that I already knew everything he was going to tell us after downloading the pump; when Medium tended to be high, how close his CGM was to his meter BG’s, what his A1c was.  I am telling you, I AM KICKING ASS over here!

But it is exhausting, draining, paralyzing and all-consuming and my personal health and relationships are suffering because of it. I need to learn how to let up a little bit. I need to understand that I can’t be in control of this horrid disease at all times. I need to remember that I have two other kids who need me, too. I need to praise Medium more often for being such an easy diabetic kid to take care of. I need to remember to breathe.

Huh, look at that, I do have some things I could work on!

(You didn’t really think I was that conceited, did you?)

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May 15 2012
11 Comments
It Ain't Always Pretty...But It's My Life

A Shout Out To Myself

Today’s theme: One Great Thing

“Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”. But today it’s time to give ourselves some much deserved credit. Tell us about just one diabetes thing you (or your loved one) does spectacularly! Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes. Nothing is too big or too small to celebrate doing well!”

So you can see from the description that I am supposed to sing my own praises. I like to sing other people’s praises. I find self-deprecating behavior so much easier. I am my own worst critic. So I will start this post by singing others’ praises and we’ll see if I get around to the “tooting my own horn” part.

I was so excited to be a part of Diabetes Blog Week. I have only found a few other D-blogs even though I knew there were others out there. I just haven’t had time to find them. Being a D-mom can be lonely. You feel isolated. You feel like no one really knows what you go through on a daily, no make that hourly, basis. And if you do it well, make it look too easy, others really don’t know what you go through. So I couldn’t wait to find other D-moms to commiserate, and at times, celebrate with.

WOW.

I was overwhelmed today.

Around mid-morning at work I decided to check my personal email. Sometimes Medium’s school nurse emails me with questions or just FYI’s so I like to check it every so often. I couldn’t believe my eyes….several comments from other D-bloggers! I have had more hits today than ever before, I even had someone from Pakistan visit my blog! I’m international! And even though I started this blog for myself and to vent my feelings for myself, I have to admit, it is exciting and rewarding to know that others are reading and may be inspired, entertained, (or infuriated, as the case may be) by my words. And I have over a hundred new blogs to work my way through now! I can’t wait!

And here is the mouth-gaping-open thing I have learned about the DOC (diabetes online community). Even though yesterday none of these people knew me or knew of me or knew anything about me, today we are connected in a way that I can only share with them. It’s like when your child (or yourself) is first diagnosed with type 1 diabetes. One day you know nothing about the disease and, quite literally, the next day you could teach a class on the relationship between blood sugar, carbohydrates and insulin. Diabetes puts you on the fast track, both in education about the disease and anatomy and physiology of the human body. But it turns out it puts you on the fast track to immediate, deep friendships, too. And that part is amazing. Those blogs that I mentioned yesterday that I was in awe of, somehow each one of them found out that I mentioned them and each one of them messaged me with the most sincere words of praise, understanding and encouragement. I so wasn’t expecting it, and I actually started crying, right there at work in my chair with my coworkers looking at me like I was nuts (they do that a lot though 🙂 )

Imagine that feeling when you’ve been stranded, alone, on a desolate island and you realize that you are being rescued. That is how I felt. Those comments from those D-Moms (and others too!) were my life raft. I know it’s just a dinghy in the vast ocean that is diabetes, but I know now that I am drifting back towards civilization and these other moms are going to be my survival fuel. So a huge THANK YOU to them!  (And a special shout out to Laura of Houston We Have A Problem, for telling me how to add the banner!) I know I am going to learn so much from these women (and some men, too!) about things diabetic and not, and I am so re-energized by this. (The first piece of advice from someone will probably be to shorten my posts. I am well aware that they tend to be a little long in the tooth, but if you knew me, you would know that this is who I am. I am cognizant of it and will try my best to have relevant, educational, entertaining, passionate, SHORT posts whenever possible–but don’t hold your breath, I got shit to say! 🙂 )

So I promised to try and pimp myself out a bit, so here goes.

I am a great FAKE nurse.

I have a Bachelor’s degree (not in nursing) and worked a fancy corporate job back in the day, but quickly ditched the pantyhose (yes, we still wore pantyhose in those days) for poopy diapers when Large was born. By the time Medium came around 2 years later, I was desperate to use my brain for something other than nap time nursery rhymes and stimulating toddler talk. So I got a job as a Unit Secretary in an Emergency Room. I. LOVED. IT. I got to be near the action, but no one was going to die if I didn’t fax the correct piece of paper. I worked there for 9 years until a year ago when I went to work in the IT department for the same health system (it was time to start making a little more money for my time). I sat next to the ER doctors and nurses for 12 hours at a time learning from them. That has proven to be great training for being a D-mom.

So I do a pretty good job at all the nursey stuff that comes with having a D-kid (and there is a lot of it!) And while my time in the ER has given me more medical knowledge and experience than the average bear, I, in no way, compare to the true greatness that is a REAL nurse!

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May 13 2012
1 Comment
It Ain't Always Pretty...But It's My Life

Happy Mother’s Day

Medium had his 3 month endocrine appointment the other day.  We got an A+ from our diabetes educator.  He liked our numbers  and what we were doing with adjustments and such. His A1C was 6.5–at diagnosis it was 11.4–a “normal” A1c is between 4-6, they don’t actually want it much lower than 6.5 because that probably means that we are having too many lows. So we are doing great! I say we as if I am the one with diabetes, but diabetes is a team sport. And I am the captain. Both the diabetes educator and the endocrinologist asked Medium if he had any questions or concerns.  They asked how he was doing with diabetes and if having diabetes was miserable or if it was ok.  He looked at them like they were speaking Japanese. He has taken all of this very well and is relatively unbothered by it…..for the most part.  There are times when he is frustrated, like yesterday when all the siblings of Small’s baseball team got to have the extra juice boxes and he couldn’t have one. Or when everybody wants to go to Sonic after a game and he can’t have a slushie. But he gets over it almost immediately. One of the best things about Medium actually is that he has virtually no short-term memory, he gets mad about something (REALLY mad sometimes) and then poof, he’s moved on.

I’d like to think that part of why Medium seems unaffected by diabetes is because I am doing such a good job of keeping his sugars in tight control and making sure he is leading as close to the same life as he was pre-diagnosis, as possible. But it probably is really because he just goes with the flow. That part of him has me in awe. I wish I could be more like that.

In any event, he is doing well.  We are kicking some diabetic ass over here! It’s hard work, but so worth it. I would move heaven and earth if it meant my kids would be healthy. There is no greater Mother’s Day gift than three thriving kids!

So a happy Mother’s Day out there to all the great mom’s I know.  Especially the ones who sacrifice everyday, go above and beyond, never have time for themselves, endlessly worry about their kids’ futures and then get up the next day and do it all over again.  In short, happy Mother’s Day to every mom!

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May 02 2012
7 Comments
It Ain't Always Pretty...But It's My Life

It’s My Blog And I’ll Cry If I Want To

I have been writing a lot about myself lately. This life-changing curve ball that has been thrown at me has really knocked me off my center and I am struggling to find my way back to equilibrium. And, this is my blog so I’ll cry if I want to. But I do want to make a few things clear.

#1-No matter how bad things seem on some days, I am well aware that they could be much worse. I know there are people out there who might look at my situation and think it was a walk in the park compared to what they are going through. And I know, and am related to, some people who would probably give their right arm to have our issues instead of their own. I never want my writing to sound whiny. I know that despite the hand we have been dealt, we are still abundantly blessed and I try hard to remember to find those blessings each day.

#2-I am not exhausted because my kids are over-involved in after school activities. I am exhausted from 3 continuous months of fragmented sleep. Period. Each kid only has one activity right now, and to be totally honest, thinking about going to watch one of them play or perform on the weekend is the only thing that gets me through the work week. So yanking them out of their activities will not solve my exhaustion problem.

#3-My husband is not nearly as affected by all of this as I am. I guess you could chalk it up to men just being a more simple creature than us complicated women folk. My husband pointed out to me after reading some of my posts that we have very different feelings about the way things are going. While I am exhausted, stressed, overwhelmed, worried, anxious and sad, he is just, well, fine. I mean, he doesn’t over analyze anything. It just is what it is for him. How I wish it could be that simple for me. I guess in a way it is good that it is so cut and dry for him, because I don’t know what we would do if we were both wound as tight as I am, but conversely, he knows that I am worried enough for the both of us, so managing Medium’s diabetes has fallen 100% on me. A friend commented the other day at how well Medium seemed to be doing and my comment was, “yes, he is doing great, because he isn’t the one managing his diabetes, I am.” I am the one running around with a net making sure that if, despite my best efforts, he falls, I will be there to catch him and he won’t get hurt.

#4-Having just said that Medium isn’t managing his diabetes, is kind of not true. I mean, he doesn’t make his own endo appointments, and he doesn’t make sure he has enough supplies and then call in his refills to the pharmacy or pour over doctor/hospital bills, but for what he can do, what a 10 year-old is capable of, he is a ROCK STAR! He makes me so proud. Other than a not-so-minor problem of him sneaking food (the chocolate chips and who knows what else he got into last night had him in the 300’s all night) he is all over the details of his disease. He accurately counts carbs, has mastered giving himself a bolus and all of the settings of his pump, and is very in-tune to how his body feels. He also understands the somewhat complex (at least for a 10 year-old) relationship between specific foods, insulin, his blood sugar, and his continuous glucose monitor. He told me that today his pump kept beeping at him to alert him of a low while he was at school. I asked him what he did. He said that he didn’t do anything because he knows that there is usually a lag between his CGM reading and what he really is, and he had just eaten a snack without dosing so he knew he would be fine. I seriously had to fight back tears. Tears of sadness that he has to mess with all of this when he should just get to be a 4th grader at school, but tears because I am so proud of how he learned all of this and how he just accepts that it is what it is.

#5-If I could learn to just accept that things are what they are sometimes, I would probably be a lot less stressed. My husband and Medium are the two least stressed people I know. When I am done crying, I will work on that!

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Apr 30 2012
1 Comment
It Ain't Always Pretty...But It's My Life

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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Apr 16 2012
3 Comments
It Ain't Always Pretty...But It's My Life

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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Apr 08 2012
2 Comments
It Ain't Always Pretty...But It's My Life

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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