Again

Yes, again. I spent 5 long years being told I’m a drug seeker. My illnesses are psychosomatic. I am making myself sick. Munchausen’s Syndrome. Finally, I received several diagnoses that explained everything. Five very long years.

Last week I fell ill from a common virus. In less than 15 minutes, a doctor completely wiped out everything I went though. Invalidated said diagnosis. Put it in my medical record that I’m only after drugs. That the only illness I have is psychiatric.

Unless you’ve lived it, I doubt you can understand how crushing this is. People with chronic illness not only have to fight their illnesses, they have to fight for their medical care. Every doctor thinks they know the answers. They invalidate each other, confusing patients and creating chaos in their wake of emergency room diagnoses.

One of the doctors this past week told me a diagnosis from one doctor was not sufficient. Seriously. The diagnosis came after 6 months of testing at the Mayo clinic. And somehow this doctor practicing in a town of 400,000 (whose resume is limited to a single city) knows more than 14 docs who have access to thousands of patients with rare disorders.

I doubt that the doctors have any idea how much damage they have wrought upon me. I doubt they even gave it a second thought when they wrote those notes. Just another piece of meat passing through. Another set of notes. No matter that I have more volumes of medical records than my friends combined. Just ignore everything that has already been diagnosed because YOU know better.

Now I begin the process anew. I don’t really have the emotional energy to do this, but if I don’t, when I need emergency care again I can guarantee I won’t be treated appropriately.

Remember, words matter. Once you’ve said it, you can’t take it back. Think about the implications of your words. Consider how much damage you can cause with your words. Choose wisely.

Respect

It’s really not hard people. Just keep in mind that every single person has opinions. Those opinions may not be the same as yours. That doesn’t make those opinions any less valid than your own.

What spurred this? On social media today there has been a flurry of things that bring out opinions. Vaccinations. ISIS. Religion. I have opinions too, but apparently some of the people who read my comments feel I’m way off base.

Seriously. Just try respect. You may learn something along the way.

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

Simultaneous

I have many facets to the way I live my life. Not everyone is privy to all the pieces. Honestly, I think most people would freak out if they saw the whole picture. So I reveal bits at a time, see how the person handles that and then decide how much more to reveal. It’s actually a pretty common way to develop relationships.

It feels like I’m living in parallel universes sometimes. Not like deceptive, More like having flimsy curtains that divide different parts of me. I haven’t told my employer I am Autistic. I have told my children about my misspent youth. I have not explained my medical conditions to all of my friends. I do answer questions when asked. See, not so different from you.

I have learned how to manage in my world. That doesn’t mean I’m “cured” of anything, I’ve just figured out how to filter information. How to blend in with everyone else knowing that I’m different. Simultaneous living.

And it’s all good.

 

Back to school

Don’t blink
Just like that you’re six years old and you take a nap and you
Wake up and you’re twenty-five and your high school sweetheart becomes your wife
Don’t blink
You just might miss your babies growing like mine did~ Kenny Chesney “Don’t Blink”

 

For many parts of the United States, tomorrow is the first day of the Spring semester. I’m seeing posts on social media about cleaning out backpacks and trying to get the kids to bed. I’m also seeing posts of parents commenting how happy they are the vacation is over.

I guess I don’t understand that. I treasure the time I spend with my kids. It seems like their childhoods have flown past. One day I’m chasing naked toddlers around the house. The next I have three graduations to attend. In between were the sleepless nights, the illnesses, the whining and complaining. The days that seemed to last forever. The calls from schools. Medical panics. And now, my house is quiet.

I’m excited to see them take off on their own. Watching them stretch their wings and seeing the early flights. There will undoubtably be some touch and gos in this process.

Parents, I urge you to see the uniqueness that is your child. Capture that in your heart so you can pull it out later when the house gets quiet. Don’t get so lost in the minute that you miss the moment.

But

You can be amazing
You can turn a phrase into a weapon or a drug~ Sara Bareilles “Brave”

 

I really dislike this word. It’s not the letter’s fault that they fit together so nicely. It’s the way people have come to use this word as a qualifier, and not always in a nice way.

You look lovely, but losing a few pounds would help.

You’re so smart, but you really don’t have a clue about people.

You’re so lucky, but I wish you would stop talking about things.

But, you don’t look sick.

But, you don’t look disabled.

But, you don’t look Autistic.

Get the idea? It sounds so negative to me. Like I’m “less than” because I don’t meet whatever expectation you have. Or that I should improve myself in order to be considered “good enough.” I’m not against improvement. I would just like to know why it is so important to people that they feel the need to comment on my shortcomings….constantly.

Your challenge: Eliminate “but” from your vocabulary or at least reserve it for a time when you won’t be perceived as judging someone. Think about your words and the power you hold.