auto-immune diseases | WifeMomPancreas

May 18 2013

It Ain't Always Pretty...But It's My Life

The Mind is a Terrible Thing to Waste

“This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play”.

I used to be a really creative person. But then I had 3 children, a full-time job and a child diagnosed with type I diabetes.

Now my brain looks like this:

Or, maybe more like this:

The old me would have been doing stuff like this:

Or this:

But I just don’t have it in me anymore.

Creativity…

Just another thing stupid diabetes has taken from me.

Tagged auto-immune diseases, Diabetes Blog Week, diabetic jewelery, insulin pumps, kids with diabetes, type 1 diabetes

May 17 2013

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It Ain't Always Pretty...But It's My Life

I’m Married to David Beckham

Today’s topic: Freaky Friday

“Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?”

So here’s the deal y’all. This topic is not my favorite. It’s not one that I was just itching to write. But here’s how I look at it. I had to dig deeper to find an answer. I had to be more creative. The topics that aren’t my favorites sometimes end up eliciting some of my favorite responses. So I am up for the challenge.

After much thought, the answer actually seemed pretty simple to me.

The answer simply is…..none.

There are no other chronic disease that I would choose to deal with instead of diabetes. And there are two reasons for that.

Number one, I am a realist. I don’t tend to expend a whole lot of energy wishing, hoping and day dreaming in fantasy land. I’ve never been any good at it. I don’t play the lottery, I don’t pretend to be married to David Beckham and I don’t dream about having a second home on my own private island where the floor of the house is see-through to the ocean below and my bedroom doesn’t have walls and is open to the gentle trade winds (ok, maybe I have thought about that one…). To me, that is a waste of time. It’s not fun to wish for something that will most likely never happen. It’s disappointing and then I just get pissed off. This doesn’t mean that I am hopeless and have no dreams. I just keep my hopes and dreams realistic. And since there is no way that we can actually switch diseases, I don’t even bother thinking about it.

And the other reason is this: like it or not, THIS is our journey. THIS is the hand we were dealt. Period. I believe that everything happens for a reason. I am not a religious fanatic, but I believe in God and I believe that He chose this path for us. I can wonder and question why, but it is futile. It’s kind of like the fantasizing. It’s a waste of time. Who am I to question Him? This is the definition of faith. And frankly, I don’t have the time or energy for anything else, so I’m going with faith.

So instead of wishing we could ‘Freaky Friday’ with another disease, I am just focusing on doing the best I can with the one we’ve already got.

As for the second part of today’s prompt, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?

Absofreakinglutely!

I have known my husband and his tId sister for over 20 years now, and until Medium was diagnosed, I didn’t have a CLUE what she had been dealing with since she was 4 years old. She made it look easy and like it was not that big of a deal. That is because she is AWESOME and diabetes is just a part of her life and not her identity. Although it’s a pretty big part of her life, she is the editor of the ADA’s publication Diabetes Forecast Magazine. Go check out her work here! I feel like I owe her an apology for not realizing how different her life was from everybody else’s and for not understanding how serious this disease really is.

And since I have been so public with my journey, I have had friends come out of the woodwork and share their own stories of struggles with other diseases or health issues that I didn’t even know they were facing. It has been a great lesson in not judging a person until you walk a mile in their shoes.

Or better yet, not judging a person at all!

Tagged auto-immune diseases, Diabetes Blog Week, family, health, kids with diabetes, type 1 diabetes

May 14 2013

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It Ain't Always Pretty...But It's My Life

Diabetes Is Not Diabetes Is Not Diabetes

Today’s topic: We, The Undersigned

“Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change??

We, the undersigned People with Diabetes (PWDs) and caregivers and loved ones of PWDs (Type 3s) do herby petition, anyone who will freaking listen, for:

Separate names for separate diseases….diabetes is not diabetes is not diabetes. Type I and Type II are similar, they are in the same family if you will. But just like two siblings in the same family can have very different personalities, so too can the different types of diabetes. And what about LADA (also called type 1.5)? Ha, you probably didn’t even know that there was a type 1.5! There is, but you’ll have to read about it here because I’m too tired to explain it right now.

Speaking of tired. I’m so tired of explaining to people the differences between Medium’s type of diabetes and other types of diabetes. The conversation usually goes something like this:

Me: Do you have the box that those cookies came in?

Uneducated idiot: Huh? Why?

Me: Oh, I just need to check the carbs for Medium.

Uneducated idiot: Why, is he on a diet or something?

Me: No, he has type I diabetes and he needs to dose insulin to cover any carbs he eats.

Uneducated idiot: Oh! Is that the bad kind?

Me: They are all bad.

Uneducated idiot: My step-mom’s uncle’s cousin had that, she died.

Me: Oh, I’m sorry to hear that (and gee thanks for sharing that bit of uplifting news with me! That is oh so comforting, dumbass!)

Uneducated idiot: Yeah, she couldn’t eat sugar or anything and she went blind!

Me: Yes, there are a lot of serious complications with diabetes.

Uneducated idiot: Does Medium eat a lot of sugar? Well, I guess not now, cuz he can’t have it anymore.

Me: Actually, yes he can have sugar, he just has to dose for it. And type I diabetes has nothing to do with eating sugar. It is an autoimmune disease where his body attacked his pancreas and……you know what. I’ll just SWAG (scientific wild-ass guess) the carbs in the cookie.

Uneducated idiot: SWAG???

Please, for the sanity of D-moms and D-dads everywhere, PLEASE give these separate diseases, separate names…..and since I’m asking for things, I’d like a public service announcement with a simple explanation of the different types as well.

Signed,

Tired, frustrated and misunderstood PWDs and Type 3s

Tagged auto-immune diseases, carbohydrate counting, Diabetes Blog Week, different types of diabetes, kids with diabetes, type 1 diabetes

May 13 2013

1 Comment

It Ain't Always Pretty...But It's My Life

The Longest Sentence In The History Of The World (or at least the D-world)

So there is this awesome thing out in the universe called Diabetes Blog Week. I was waywardly meandering around the internet last year about this time, usually a very dangerous thing, but this time it was pure goodness. I happened upon a diabetes blog that mentioned the upcoming event where D-bloggers from around the world all write about the same topic each day of the week and then they are all posted in one place for everyone to share their thoughts and feelings. If you are a type 3 (often times those who do not have diabetes themselves, but care for someone who does, call themselves type 3’s), you know how lonely this disease can be. The diabetes online community, lovingly referred to as the DOC, is an absolute LIFEBLOOD to many type 3’s. When no one, not your mom, your sister or your best friend, can relate to how worried you are about the correction bolus you just gave your child at bedtime because he was 285, but then you remembered that he played in 2 baseball games, a soccer game and a football game that day, and now you are wishing you could suck some of that insulin back out of him like you can suck venom from a snake bite because he’s now fast asleep and rightfully exhausted from his day so you don’t want to wake him, so instead you set your alarm to check him in 3 hours, and then wonder why you even set your alarm because you have just laid there and worried for the whole 3 hours, and then you check him and he is a perfect 123 with no IOB (insulin on board) so you get back in bed hoping to catch a few winks before you have to get up, but then you can’t fall asleep because you are praying to God and thanking Him that he was alright and then you start thinking about the other possible outcomes that could have been which leads you to think about how much you hate diabetes which makes you wonder for the bazillionth time why no one has found a cure for this dreaded disease yet which makes you so sad and angry that you can’t sleep, and then, hey, guess what, it’s time to get up, yeah, when no one can relate to THAT, you get on your iPad and seek out your friends in the DOC who are also awake, fighting the same battles and you commiserate. (I am also submitting this blog post to the Guinness Book of World’s Records for longest sentence EVER!) And even though they aren’t there to do the work for you, or directly help you, just knowing that others KNOW, I mean REALLY know, what you are going through makes you feel less sorry for yourself and less lonely.

At this point I have already written 474 words and I haven’t even gotten to today’s topic! Oh how I love my First Amendment right!

Anywhoooo…..

Today’s topic: Share and Don’t Share

“Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?”

Medium was only diagnosed 15 months ago so we have only seen his endocrinology team about 5 times. And I have to say, they pretty much rock. But I wish they could really see how tough Medium is and how he is not letting this disease slow him down for even a second. I wish they could really know how great his attitude is about his diabetes and I wish they would make a big, no, a HUGE deal about it! I wish they would know this and then invite him to stand up and speak to an auditorium full of people who have lost hope. He would NEVER in a million years do this, but it would be nice to be asked! I wish they would make it a point to really recognized him for how well he handles things. Because as much as I can tell him, I’m still just his mom and kids always think their mom’s are blowing smoke and just say nice things that they don’t really mean. It would go a long way to boost his confidence if someone else recognized his struggles and acknowledged his hard work. (I also wish they could magically get him to eat vegetables, but that’s another thing all together!)

And I hope they DON’T see that we change his set out every 3-4 days instead of every 2-3 and that I can’t remember the last time we changed the lancet in his poker! I also hope they don’t see that he eats pizza 3-5 times a week, but they see his A1C and that is telling enough!

Tagged A1C, auto-immune diseases, diabetes, Diabetes Blog Week, kids with diabetes, type 1 diabetes

Jan 17 2013

Hell Hath No Fury

I’ve had a house guest for almost a year now. He was not invited, and he won’t leave. I’ve been really busy for the last few months so we’ve been able to stay out of each other’s way, for the most part.

But Medium’s numbers have been totally whack lately and it’s all his fault. The uninvited guest, that is.

The other night when we checked at bedtime he was 467……WTH? 467??? Just two hours earlier he was in the 100’s. So of course I rage bolused on him and then checked him 2 hours later and he was 187. Then I decided to check him again at 3:00 a.m. because I got up to pee.

My bleary eyes watched the countdown on the meter 5, 4, 3, 2, 1…..54.

Blink. Blink.

54.

Get the hell out of my house. I’m so over you, you don’t even know it.

It’s easy to push him to the back of my mind when I am extremely busy. It is easy for me to not get down about him when I don’t have time to think about him.

But things have finally slowed down a little bit in my life and now he is all up in my grill again.

And as much as I want to stick my head in the sand and ignore him, I can’t.

Because my son’s life depends on me paying attention to the rude, ugly, smelly, obtrusive and down-right abusive guest.

So here I sit. Vigilantly watching the stupid SOB.

He’d better sleep with one eye open.

Hell hath no fury like a woman whose child’s life has been threatened.

Tagged auto-immune diseases, diabetes, family, fierce mama's, health, hyperglycemia, hypoglycemia, kids with diabetes, type 1 diabetes, women

Oct 12 2012

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It Ain't Always Pretty...But It's My Life

It’s All Meri’s Fault (ok….not really)

I must stop reading Meri Schuhmacher’s blog, Our Diabetic Life.

Every time I read it, it takes me further away from my own computer.

I read her posts and she is able to nail down my thoughts with her words so well, I think, why do I need to write? She has already written it. And she has written it better than I could. I suppose 14 years of experience as a D-mom has given her ample opportunities to parlay her thoughts into eloquent words, but damn, she is good.

So why bother?

Here’s why.

Because we each have our own story. And as much as it may seem similar to someone else’s, it is uniquely our own.

We just might have an idea or a perspective on something that is just different enough to make a difference to someone.

And I really can’t blame this all on Meri. Part of why I am not writing, it that I am stressed. Way, way stressed.

We have been trying to sell our house for 2 months now. I have watched houses all around mine sell. We have put lots of time and money into updates based on Realtor feedback. We have dropped the price, twice. I have to have the house in pristine condition every morning when I leave for work in case we get a request for a showing during the day. And keeping a house in immaculate condition with 3 busy boys and 2 full-time working parents is about to kill me. And to top it off, we are about to loose the lot we hand-picked to build on. So we REALLY need to sell our house.

And then there is work. Ah work. I will be traveling to Wisconsin for the better part of the last 2 weeks of October to learn how to build, implement and support an entirely new electronic medical record for the very large health system that I work for. I will go back again in November as well. Then I will spend the next 18 months or so working on that. I am not complaining. I am thrilled to have a stable job, and am actually really excited to learn all of this from the ground up. But being away from home and my kids so much is going to be very hard for me and a logistical nightmare. Please pray for my husband.

And then there’s my health. I found out this week that food sits in my stomach for 8 hours before moving on, which is the cause of my feeling like crap all the time. I don’t really know what it all means, I go back to the doctor next week to discuss next steps. And while I am thrilled to have some answers, this on-going pain and nausea really gets in the way of me being happy and productive.

And then there is Medium’s behavior and my inability to manage it. Can I make a confession? Of course I can, this is my blog. I’m ready to give up on him. I’m ready to just wash my hands of him and be done. I love him. I love him more than I can express, which is why I want so badly to “fix” him. But I can’t. I am out of ideas. There are no more tricks up my sleeve. I am waving the white flag. My love for him isn’t enough.

And let’s not forget about diabetes and all it’s baggage. Medium’s been doing great–diabetes wise–, but it takes a lot to manage it and keep him doing great. And diabetes can’t be put on the back burner just because we have a lot of other things going on.

So it’s not really Meri’s fault that I’m not writing. I just don’t have time. With all of this other crap going on, something’s gotta give, and right now it is my writing.

Next is my sanity.

Tagged auto-immune diseases, delayed gastric emptying, diabetes, family, health, kids with diabetes, stress, type 1 diabetes, women

Aug 18 2012

Status Quo

Six months. It has been six months since Medium was diagnosed with type I diabetes. (Well actually, it’s been almost 7 months now).

But six months is apparently the magic number for me. I am finally at the point where I don’t think about Medium’s diabetes minute to minute or hour to hour. After six months I guess I realize that we do know what we’re doing and, to some degree anyway, we can predict what his body is going to do. I haven’t been blogging much lately. Mostly because I’m busy, but it turns out I just don’t have very much to say lately, at least as far as diabetes goes.

Things here at home have been pretty status quo.

Medium’s numbers have been okay, more on the high side, but we have things under control. We had his three-month endocrine appointment the other day and they agreed that he is coming out of his honeymoon phase. We made some adjustments and I think things are going to be fine.

He started school this week too. His teacher seems nice, although she seems a little nervous about the diabetes. But I think she’s going to be great and I think she will pay really close attention and make sure that Medium is okay while he’s in class.

And of course our school nurse is there and she is awesome and everything is running smoothly.

My brother and his family just moved here from Ohio and they have three boys around the same ages as my boys, so Medium is loving getting to spend so much time with his cousins.

My husband and I have even stopped getting up at 3 AM to check his blood sugar. We do a midnight check and if one of us wakes up in the middle of the night to go to the bathroom or something we will check him but we are no longer setting our alarm for 3 AM.

Right now things are just… Normal.

It’s weird.

We have our house on the market right now so it’s clean, it’s picked up, its immaculate and that has relieved so much stress for me.

So right now, at this very moment in time, my emotions are in check. I’m not feeling overwhelmed with thoughts that I need to get out in blog posts.

The house is clean, the kids are back in school, and diabetes, for right now anyway, is behaving itself.

I don’t know how long this will last, but I’ll take it!

I’m sure there is some kind of drama lurking around the corner, and I will be able to fill pages and pages of blog posts. But for now I am signing off.

Until the next catastrophe…

Tagged auto-immune diseases, diabetes, family, health, honeymoon phase, kids with diabetes, school nurse, type 1 diabetes

Aug 04 2012

4 Comments

It Ain't Always Pretty...But It's My Life

I Have No Idea What I Am Doing

Wow, it has been so long since I blogged that I had to go back and read some of my own posts to reacquaint myself with my blog!

And boy was I angry a month ago. Wow. I promise to not do THAT again! Well, I guess I can’t promise that, but I will try. 🙂

So, so much has happened in the last 6 weeks. I have just been super busy. My oldest and my youngest and I were all in a production of The Wizard of Oz last weekend. It was so much fun, but man was that exhausting! For three weeks straight I went straight from work to rehearsal. Fourteen hour days for three weeks almost killed me! Thank God Medium went to diabetes camp during that time and I actually got five nights of uninterrupted sleep! I was so worried about him and what his numbers were and how he was doing and if he was having any fun at all or was he just terribly homesick, that I had to take an Ambien every night to ensure that I actually slept. But then my days were filled with work and Oz rehearsal so the week really flew by! And he had a great time! He did not brush his teeth even once while he was gone, but he had fun! He had fun and we got a MUCH NEEDED break! So I’d say it was a success!

I really struggled when he first got back from camp. His emotions were all over the place and I think he was exhausted. And then there were his blood sugars. They were SUPER high when he got back from camp. I was really feeling guilty about how I was feeling; that it was so nice while he was gone. We could eat food without thinking about what it was, how many ounces it was and how many carbohydrates were in it. The house stayed picked up, there was no arguing between the other boys, there was so much less stress in the house with him gone. Because besides having T1D, Medium also has ADHD and that, sometimes, is harder to deal with than the diabetes. At least with diabetes you know what you are trying to accomplish. It might be extremely difficult sometimes to hit that moving target, but at least I know that I am trying to hit the target. I know that I need to keep his blood glucose between 70 mg/dL and 140 mg/dL at all times. That is my goal. And to accomplish that goal, I check his blood sugar often and then I either feed him or give him insulin. I am over-simplifying this to make my point, which I will get to, someday.

With ADHD, I HAVE NO IDEA WHAT I AM DOING! (hey, look at that, I got right to the point! Not usually my style!)

There is no rule book. When he lies to me, I don’t know if that is him being a pain in the butt 10 year-old or if that is his ADHD. When he sneaks food, I don’t know if that is him just taking what he wants because he is a kid, or if it is the uncontrolled impulses of his ADHD. When we ask him to take a shower and he yells at us and tells us that he’s not going to do that and that we are stupid, is that just him being defiant, or is that his ADHD? And then when we finally drag his sorry butt up the stairs and walk him into the shower and then he comes out of the shower with dry hair and puts on dirty clothing, is that just him being lazy, or is that his inability to focus and complete tasks with multiple steps that is a hallmark sign of ADHD?

The answer is, I just don’t know. And I don’t know what to do about it. We have tried everything. We have punished, we have yelled, we have taken away privileges, we have spanked, we have tried natural consequences, we have done it all. NONE OF IT MAKES A SHIT BIT OF DIFFERENCE! Which is what makes me think, it is more his ADHD than anything. So then what do we do? Just let him get away with this behavior? ADHD or not, this kind of behavior is not acceptable and should have consequences. So he is either ALWAYS in trouble, or just walks scott-free. I feel bad when he is always in trouble, especially if he really can’t control it, but I can’t stand the behavior!

We have been dealing with these issues all of his life (and for the record, he does take medication for his ADHD). Then he was diagnosed with diabetes and things have gotten worse. Now there are far graver consequences to him sneaking food (one of his favorite pastimes). And for the first six weeks after diagnosis we were waking him up in the middle of the night to feed him because he was low, so we knew he wasn’t sleeping well, so we chalked up his bad behavior to being tired and not feeling well from blood sugar swings of highs and lows. And then, of course, there is the simple fact that the kid was diagnosed with a life-threatening, chronic disease with no cure. So of course we wanted to cut him some slack.

But it has been six months since diagnosis and we have got to get a handle on this situation. We got the name of a counselor from a friend and I think we need to take him. Not just for us, but for him. Honestly, he doesn’t seem to be bothered too much by his diagnosis, but I know that he might be keeping it all in, or not know how to talk about it.

So we will try this.

Because if we don’t….

Tagged ADHD, auto-immune diseases, blood sugars, diabetes, diabetes camp, family, health, kids with diabetes, moving target, type 1 diabetes

Jul 14 2012

1 Comment

It Ain't Always Pretty...But It's My Life

I Got Nothin’

It seems like it has been forever since I blogged!

And to be honest, I don’t really have anything new and earth shattering to say.

There is a lot going on in my life, that is sucking my energy.

I’m not ready to share it all yet, but it is good stuff.

Medium is still coming out of his honeymoon and that is not good stuff.

It makes managing diabetes more difficult, and I don’t like difficult.

Medium leaves for diabetes camp tomorrow.

That will give me LOTS to write about, I’m sure!

So, I’m sorry that I have been silent.

I promise to be moved to write soon.

Tagged auto-immune diseases, diabetes, diabetes camp, kids with diabetes, type 1 diabetes

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.