Lens

I had a revelation recently. Shocking, I know. Sometimes we get so wrapped up in our own stuff that we forget all the things going on around us. We see everything through the smudged lens of our personal experience.

For me, it came with a hospitalization a few weeks ago. I returned to work and when asked how I spent the holiday weekend, I replied “in the hospital.” Responses varied from “oh my gosh!” to “what are you doing at work?” The whole time I was thinking “so what?”

You need to understand that I spend a lot of time both at doctor’s appointments and in the hospital. This week, I had 5 appointments. I average 2-3 every week. It’s my life now. I don’t even give it a second thought. When I was asked what I was doing on my day off, I replied “going to 4 doctor’s appointments.” The conversation stopped.

I now realize that my normal is not even close to “normal.” For most people, my life sounds like a major health crisis. It is. However, I don’t live like it is any different from “normal” because this is my normal. My lens doesn’t magnify my health because I choose to focus on other aspects of my life. Does this mean I’m not ill? Nope. Just that I’ve accepted where I’m at and kept moving forward.

Your challenge: Think about how you look at things. Is that drama really as dramatic to everyone else? I’m reminded of people in my past who reacted to events like the apocalypse had happened. I think about people in my life now who are wringing their hands over flat tires while I’m learning that I may have a ninth “rare disorder” that may very well change my entire life from the ground up. Keep things in perspective. Keep your lens aperture open wide.

Snark

Here it is. Yes, this is snarky, so stop reading right now if you are feeling offended.

I communicate with many people each day via this little blog, social media, the workplace, texts and phone calls. I follow a number of social media pages and Twitter accounts. The beauty of the Internet is the equality it offers. Anyone can open an account and post away.

Yeah. Anyone. About anything. It’s no secret that I’m involved in Autism Awareness. This area is probably the one that gets me riled up the most. People come onto pages and ask questions like “my 11 yo son won’t get up and go to school. Is this Autism?” Or, “I think my 8 month old baby has high functioning Autism because she doesn’t sleep through the night.” How about “do Autistics prefer to wear blue clothes?” A personal favorite…”how do I get my 20 yo son to stop playing video games?”

Seriously…learn about the disorder before you post. Many 11 yo boys don’t want to go to school. Babies have unusual sleep patterns. Autistics are like everyone else when it comes to preferences. And, may I suggest parenting the 20 yo son?  That is frequently seen as being cold, just so you know. If you’re supporting the kid, you do still have a say in what their life looks like. Want to check out that theory? Tell the kid they have two weeks to get it together or they will be supporting themselves. Miraculous things happen when boundaries are set.

Yes, yes. These are my opinions. I am past the point of being amused by people who think social media is a triage room. One person came on a diabetes support page and asked if insulin was really necessary to stay alive. In case you didn’t know, the answer is yes. Bodies make insulin as part of keeping things balanced. You need it to survive.

How about this gem…”I think I have gastroparesis because my stomach rumbles a lot.” Ok, well, gastroparesis is a condition many know nothing about. However, if your stomach is rumbling, it’s moving. Gastroparesis literally means paralyzed stomach. You take it from there.

I could go on rambling, but I’m hoping you get the idea.

So, the challenge. I grew up with the saying “open mouth, insert foot.” Given our unprecedented access to information, there is no reason to ask the types of questions listed above. If it’s medical, ask your care team, Social media is not the place to get medical information. If it’s an Autism question, there are many, many resources available that can provide better answers than a social media page. Oh, and before you post that question? Ask yourself why. What is it that leads you to believe that x is related to y? You might just discover that your perceptions need adjusting.

 

 

Imposter

I went and saw “The Imitation Game” today. Watching the portrayal of Alan Turing trying to fit in was both awkward and painful. Awkward because I could see several of the portrayals in my own behavior. Painful because it was obvious that the man was tormented by his differences. I watched an awkward school boy grow into a man with incredible talent. A talent that others denied and finally disowned. The man suffered and eventually committed suicide because of this denial.

There’s actually a name for this denial called “imposter syndrome.”  Alan Turing was not able to see past the condemnation of others.  While Wikipedia can justify almost anything, I’d bet most of us can identify with at least some part of this article.  http://en.wikipedia.org/wiki/Impostor_syndrome

No matter how hard we want to believe that the world will accept everyone’s quirks and life will be wonderful, it’s not going to happen tomorrow. We’ve made what most would consider to be large strides in these areas. Yes, there is still much that is unequal and unjust in society. Much of this change has happened in the last 50 years.

Your challenge: Accept diversity. Broaden your understanding of things that are unfamiliar to you. Consider that your perspective is most likely different, not wrong. Ditto for your neighbor/coworker/fellow members of society. It is possible to coexist. And that, begins with you.

 

 

Disneyland

The happiest place on Earth. Yeah, really. Because we all want to pay $200 per person to stand in line all day, eat lousy food and listen to children cry. In the happiest place on Earth.

Now you too can become part of the great social experiment being foisted upon the rest of us by people who think vaccinations are evil. You see, there’s a measles outbreak that is spreading throughout the globe. So far, about 2 dozen cases have been traced back to Disneyland directly. Of those, half were unvaccinated people.

http://www.bartbarrett.com/home/one-dead-child-two-foolish-parents#.VL2RvMbn8dV 

In my city, 300 people were put at risk when a child with measles was brought into an ER. The child was unvaccinated and had been to Disneyland. That doesn’t count the number of other people this family exposed as they dragged their sick child through cities and towns.

Seriously, vaccines do not cause Autism (an easy reading version http://www2.aap.org/immunization/families/mmr.html) and while it’s possible for someone to have a reaction to a vaccine, it’s very rare.

The diseases are more common than vaccine reactions. From January 1-August 16, 2014, 17,325 cases of pertussis have been reported to CDC by 50 states and Washington, D.C.; this represents a 30% increase compared with the same time period in 2013. (http://www.cdc.gov/pertussis/outbreaks/trends.html).

If you’re a conspiracy theorist, too bad. There is way more evidence out there that vaccines do more good than harm. Nothing is perfect. When it comes down to it, I’d rather run the risk of a slight fever and some grumpiness over the death of my child.

As for me, I can no longer receive vaccines because of my illnesses. If I could, I would. So I rely on YOU to do your part. The more people who are vaccinated, the smaller the outbreaks. Selfish, I know. But there are literally hundreds of thousands of people who have cancer and autoimmune disorders who would also appreciate your cooperation. In reality, I think everyone would appreciate your cooperation, even the idiot anti-vaxxers.

So, if you are an anti-vaxxer think about the deaths of your loved ones because that’s what you are inviting. Measles was well on its way to being eradicated in the 1970’s due to vaccinations. Now we have outbreaks all over. Including the happiest place on Earth.

It’s a choice. I get that. But perhaps you should choose life in this case.

3am

It’s not quite 3 am. And I’m here, awake again. Pondering life. And, well, why my body hates me. Chronic illness is just plain miserable. It seems that just as I get in a groove, something flares up. Being Autistic, I like my world to be at least somewhat predictable.  I can just go with whatever is happening. I’ve become quite capable at shifting gears and rolling with the punches. There are some people who would tell me that being flexible negates my Autism diagnosis. Nope. It just means I’ve spent a long time figuring out how to let go of plans and such.

The medical issues are so unpredictable. I literally can go from fully functional to incapacitated within an hour. I am most fortunate that my support system understand this. I don’t know what I would do if they suddenly stopped doing what they do. I have an idea, based on people airing things on social media.  It’s not a pretty picture.

At least the hospital’s bed is sort of comfy. And the staff are competent. And pleasant. Good things when you don’t feel well.

Your challenge: Think about the challenges in your life. Try to understand that everyone has things in their lives that weigh them down. Now, think about how you could help ease that weight. And act on those thoughts. Because we can all use a little help from our friends.

Say what!

There are just some things that rub me the wrong way. I know I’m not the only one or else there wouldn’t already be a name for this phenomenon…pet peeves. Today’s discussion is happening because, well, common sense is a flower that doesn’t grow in every garden.

I’m a diabetic. No secret there. I use insulin to control my blood sugar. Again, no surprise there. I was informed, via social media with links to news articles, that insulin is a poison and all diabetics are killing themselves by using it. News flash! If I don’t take insulin, I’m guaranteed to die a really unpleasant death. While it is possible to have an insulin reaction (various forms, including allergic), it is very rare. So uncommon that it is barely mentioned in any journal articles. Yet, that one snippet of information is what people latch onto.

Another myth buster for you…diabetes is not caused by the foods you eat. It is a genetic predisposition. In Type 1, it’s autoimmune. In Type 2, you have the gene and something triggers it. While life style changes are an important part of managing diabetes, they’re not everything. If I had a penny for every time someone told me how “bad” something was for me to eat or how I “brought this on myself” through diet, I’d be a billionaire by now.

So, the common sense. An acorn falls from a tree and the sky is falling. Sure, you can look at things that way. Or, you can look around, observe a few things and maybe ask some questions before you determine the apocalypse is here.

Oh, and don’t smack my cupcake out of my hand. I’m allowed to have treats, just like everyone else. Everything in moderation!

Youngest

Dream on
Dream about the world were gonna live in one fine day.
Dream on
Spend the night in heaven, I’ll be here to light your way.
Someday tomorrow will smile
But little girl in the meanwhile
Dream on~ The Righteous Brothers

 

Youngest turns 18 today. We just spent the last week checking out college and interviewing for jobs. It’s bittersweet to see my baby spread her wings.

boodress

You did what you wanted from the start. Your quirks delighted (and still do) everyone. You attended all kinds of activities, content just to be included. I’m sure you really didn’t enjoy all the sports and activities we signed you up for because your siblings were participants. You also learned a lot along the way, just by being part of things. You were the only girl to earn all the Girl Scout Brownie Try-its in your Troop. Probably because you had three times as many opportunities to learn things although your determination to finish what you started played a huge part.

IMG_0460007

And off to high school you went, ready to take it all on. Your first time driving with a license…your new best friend…sisterly love. And Minions. You didn’t let people tell you what to do. While you stayed near the beaten path, you certainly carved your own way. You found yourself.

2013-01-17_18-33-36_114IMG_20131215_160935_621ducttape1bridgetminion

So now, here we are. The big step into adulthood. Adult, yet not. I’m so very proud of the person you are and look forward to seeing you take flight. Dream on, baby, dream on.

boosweatshirt