Tuesday, September 20, 2011

The facade...

There has been a lot of talk of rainbows, unicorns, and glitter in the DOC lately (Diabetes Online Community).

It has also been brought up that people who blog are too negative and are perceived that their lives suck. I haven't said much about this until now. It got to me last night when I read another comment about it on Facebook.

Here is what I would like to say to those people.

I, like I know many of other bloggers are as well, am a very positive person. We live life just like you and see positive things going on in our lives. We really do. These typically are not the things that make it onto the blog to be shared with our readers.

And I think I know why.

Each and every day in our "normal" lives we are forced to put on a facade of sorts. The people we see and the interactions we have are not typically related to the disease our kids fight day in and day out.

We know our struggles.
We know we have long nights of checking blood sugar.
We know we have long nights of fighting highs and lows.
We have days where we fight them too.
We have battles where our kids sneak food.
And battles where we can't get them to eat at all.

This is truly what our lives consist of. Sure we have other things going on too. You know cooking meals, cleaning floors, doing laundry, etc. But it is these "extra" and highly necessary tasks that tend to bring us down.

We cannot share these things with our day to day interactions. They don't get it.

So, we put on our facade for them. They often see diabetes as "easy". Why? Because they don't see all the struggles. They might see a finger poke. They might see snacks being given. But to them that is it. Diabetes is no big deal.

But we know different. We know all the work that goes into every decision we make. We have to think and make decisions on why this low needs 5 skittles and that one needs 1/2 pack of fruit snacks.

We tend to hide what is really going on from the people who don't get it and don't have diabetes to deal with daily.

Hence the facade.

Instead, we bring that here.

To the DOC.

We use blogging and Facebook as a safe place to share what is going on. To share our frustrations. To share the "negative" stuff. This is where we get it off our chest so we can move forward. Once the emotions and feelings are OUT, we can move forward. Just because we may seem negative in our posts, that does not necessarily mean we are sitting around moping all the time.

And sure, there are times when we get into a little bit of a diabetes rut and we might be a little more down that normal. And you know what, that is ok! We all have our good days, weeks, and months managing a crappy disease. And we have our share of bad days, weeks, and months too.

Because no matter how you look at it, Diabetes sucks.

The only saving grace for me is that I have all of you for support and this blog to get out the negative crap so I can move on.

There are no rainbows, unicorns, and glitter on a daily basis with this disease.

And if you want to put on a facade of your own and make it appear that is what your life is all about, go for it. That is your choice. But please don't put those of us down that don't see life that way.

In my world, in the life I live, it is ok to have emotions other than rainbows, unicorns, and glitter.

*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

Wednesday, September 14, 2011

"You don't know what it's like."

This is what I heard yesterday. Let me start at the beginning...

I took The Princess for blood work on Monday after discussing her upcoming bronchoscopy with the hematology nurse. We decided we needed to know where her platelets were before the procedure. I got the call the next morning that she had dropped from 137,000 the week prior to 68,000 this week. 50% drop in less than a week was not good. We made the decision to go ahead with IVIG now so we could guarantee her platelets would be up enough for the procedure on Thursday. We rushed down to the children's hospital, got her IV in on the first try, and got her all hooked up.

While we were sitting in our. Infusion spot for the day, I heard a heart wrenching conversation that seriously broke my heart and made me think. This conversation was between a mother and her son. I don't know their story. I just know we were in the oncology/hematology clinic infusion area. I know the boy had a IV and was getting some sort of infusion. They discussed with what seemed like his doctor about leaving his IV in and starting IV fluids at home because he was not drinking enough. When the doctor left, this poor child had a melt down. One that brouht me to tears.

He was crying saying things like...

"I don't want an IV! Take it out!"

"You don't know what it is like to have surgeries and IV's and stuff!"

And his mom's response, made me a little mad.

She said "Well, you don't know what it is like to watch someone go through all of that either!"


And quite sad.

Why did she react that way? Why couldn't she just let him have his pain for whatever ails him? She could have just said, I know. I don't know what it is like. I am sorry you have to go through so much. It isn't fair and it is ok to be upset about it all.

Or something like that. Because the truth is as a parent I have no idea what it actually feels like to be the one going through the medical challenges myself. And I would never want to discount what the person themselves is feeling. Medical stuff sucks and it is not fair.

And I don't think it is fair to compare the pain and challenges of the parent managing the medical challenges to the kids living with them.

This mother and son taught me to let my kids feel what they feel about their diseases and to not let my feelings overpower theirs. Because what I deal with is nothing in comparison to what they live with every day.

*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

Monday, September 12, 2011

A glimpse into the week ahead...

It seems we never have a dull moment around here. And we rarely have a week without someone having a doctor appointment these days.

Last week we received some decent news. We went in on Wednesday for The Princess' platelet check to find out that the steroids she was on for her asthma the week prior helped her platelet count A LOT. She was back up to 137,000! Amazing. We avoided an IVIG treatment for now. We scheduled her next appointment for 3 weeks from then, on September 28th.

Today we are going to the dermatologist for a follow up for The Princess. She has had this rash (perioral dermatitis) on her face since May. The dermatologist had us using a protopic cream 2x per day for 6 weeks. I wish I could say she was "clear", but she is not. I forgot to use the cream for 1 1/2 days last week and the rash came back worse than before. The rash is not contagious, it just looks yucky and bothers The Princess a lot when it is bad.

Tomorrow I take The Superhero for his quarterly endo appointment. My dad asked me why I even take him for these appointments. We do all the adjusting on our own. The only reasons we go I guess are to get his A1C and to hear how great she thinks we are doing. Somehow that helps me keep plugging along with Diabetes. I am not nervous at all this time around. Diabetes (knocking on wood) has been ok lately.
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