Category Archives: Uncategorized

Peanuts, pickles and pig trotters

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I feel like when people judge me they’re not judging me, because they don’t know who I am.~ Gisele Bundchen

I know this post is going to upset some people and that’s okay. You can’t stir a pot without expecting some spill over. I hope if you respond viscerally, that you can stop and breathe before you judge.

I have a chronic illness that impacts all areas of my life. The formal diagnosis is segmental digestive tract paralysis complicated by gastroparesis and hereditary angioedema, In layman’s terms, that means that my gut no longer works. Peristalsis is almost non-existent and I rely on gravity to keep things moving through. I live with chronic pain that would put many of you in the hospital. I am also insulin-dependent diabetic, hypothyroid and have had a TBI that affects my speech, memory and balance.

Just for the record, there is no cure for diabetes. Changing lifestyle and diet can help, but it won’t cure the disease. There is no cure for thyroid masses that cause you to have your thyroid removed. There is no cure for physical trauma to the vagas nerve that controls everything that happens in the abdomen. There is no cure for the effects of traumatic brain injury. There is no cure for autoimmune disorders. There are no cures for the genetic defects that cause random things to happen in my body.These are facts that you can google-doc all you want.They aren’t changing.

Recently, a number of non-medical people have been offering advice on how to cure my various illnesses. Apparently, my consumption of Diet Coke will kill me (okay, but I suspect something else will beat it to that point). If I only ate a vegan diet, I would be fine ( except for the surgery that would be required to remove the food from my stomach). Paleo would be perfect (except that much protein would kill off my kidneys). If I drank Shakeology (yes, I’m picking on it by name) all my symptoms would disappear (um yeah, after another surgery to fix the damage caused by the ingredients) . The only thing that would disappear is money from my wallet.

Eat more kale, mix honey and cinnamon, soak my feet in Listerine, drink aloe juice, drink vinegar, detox from copper, try acupuncture and chiropractic. Meditate, pray, turn my life over to a higher power. Whatever you do, make sure that Western medicine isn’t part of it!

Seriously. I have multiple diagnoses. If you believe I haven’t at least looked into other treatments, you don’t know me very well. Just because you know someone who has a similar set of diagnoses does not mean you know much about me. I acknowledge your need to “fix”  me. But, sometimes there is no fix.

So, please, just stop. I have enough to deal with in my life that I don’t need to know your great, great-aunt on your mother’s father’s side of the family was cured by eating pig trotters. Your advice may be offered out of thoughtfulness, but it comes across as judgment.

Live and let live people. You can’t fix everything. You are not being “negligent” by keeping your “cures” to yourself. I’m glad pig trotters worked for you. Now let me be as I keep trying to stay alive with the best quality of life I can have.

Top 8 Diagnostic myths for Adult Females with Asperger Syndrome: A Brief Look

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A very perceptive article on Aspergers and females:

Tania A. Marshall, M.Sc., Clinical Psychotherapist and Trainer/Presenter's avatarWelcome to Aspiengirl

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Over the years, I have listened to the stories and narratives females across the lifespan. In working with and supporting females on the Autism Spectrum, I have personally learned alot. With their permission, I am and will be sharing their stories, thoughts and quotes, at times in blogs and mostly in my book series. Amongst the stories and narratives of adult women, research and personal clinical anecdotal experience, I have come across some common diagnostic myths. What follows is a brief summary of my Top 8 Diagnostic myths I have most commonly heard.

MYTH:  You can’t have Asperger Syndrome because you are female.                                                                                                                                  FACT:  Females of all ages can and do have Asperger Syndrome (AS). Females with AS are in every country and they usually have a distinctive profile. The gender statistics are approximately 2:1 for male:female, and well may be 1:1 in the future, as we find out more…

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My Lifeline

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I’m going to keep this one short. I know many other people who have spoken quite eloquently on this subject. But, after three incidents in the last week, I feel I need to say something.

Service dogs are not pets. They are not trained to provide amusement. These dogs provide essential service to people with disabilities. Don’t ask me what tricks my dog knows. The answer is none. It’s not polite to stare. It’s not polite to pry into the person’s background. It’s not appropriate to interrupt the team.

Please don’t tell your child to pet the “nice doggy.” Don’t feed my dog, even dog treats, without asking me first. Don’t whistle as we pass. Don’t tell the people you’re walking with that the handler is “special.”

Understand that while there are many, many studies showing the positive impact that pets have on humans, it is not appropriate to call your pet a service dog just so you can take s/he with you everywhere. Taking advantage of a law that protects disability rights just makes people like that schmucks.

I listened to a small dog bark on an airplane for almost two hours. I saw a dog poo in an airport and the owner walked away. Blizzard was almost bitten yesterday by a “service dog.”

So, please. Just once respect the law. I know you love your dog. I have two pets that I love too. But, your decision to take your pets into public is wrong. You are breaking the law.

I was once asked the difference between a pet and a service dog. The answer is clearly defined by federal law. The service dog performs tasks to mitigate a disability. Stupidity and ignorance are not disabilities.

For more information, please read:  http://www.ada.gov/service_animals_2010.htm

Also feel free to read more about the impact of pets in public:

http://www.anythingpawsable.com/10-things-service-dog-handlers-want-know/

http://www.anythingpawsable.com/fake-service-dog-complications/

http://spooniemindfulnessmatters.wordpress.com/2014/04/08/service-dogs-vs-pets-written-by-my-friend-tina/

 

Domestic terrorism?

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Yesterday, I was discriminated against because of one of my disabilities. The acts of one individual and by extension, one agency, caused me to seriously think about the state of our rights here in America. What happened yesterday amounted to a unautorized search under Constitutional law. But, because it was conducted under the auspices of “security,” it was perfectly legal.

I watched literally hundreds of people shuffle through the TSA checkpoint yesterday. No questions asked, they just shuffled along dropping their clothes and shoes into bins to be x-rayed. They consented to pat downs and partial strip searches because TSA asked them to comply. Americans are so accustomed to the invasive practices of TSA that they don’t even question the legality of what’s happening in the name of security.

I for one am outraged. There was no justification for what happened to me yesterday. I requested that a vial of insulin not be x-rayed as that process ionizes the medication and renders it useless. The TSA agent told me I was the first person to request this. The TSA then proceeds to rifle through my belongings. I was threatened with security and being removed from the airport at least six times.

In an attempt to figure out what had triggered this event, I asked the agent in charge why she insisted on a full search procedure. I was told it was because their policy dictated it. I also learned she felt that working for TSA for 8 years and having a degree in Criminal Justice made her somehow better than me. Her chiding tone confirmed that she no longer saw me as an American citizen just trying to get home. No, I was an inconvenience to be handled.

The agent insisted she was just keeping everyone safe. I, for one, did not feel safe. Honestly, I don’t feel any safer under TSA than I did 13 years ago. This agent threatened to force me out of the airport with no recourse. It was truly comply or else. I asked how she was making things safe and was told she didn’t need to explain herself. TSA has become an agency that answers to no one. They hide behind policy and procedure. There is no accountability. There is almost no respect for the people they are supposedly helping to feel safe.

Since the TSA has failed to do anything in the way of preventing terrorism, what is their true mission? They came claim that by their existence, they are a deterrent. Yet, aside from confiscating millions of gallons of wine, water and baby formula there is nothing to show for their efforts. Tons of metal products including scissors, knitting needles and pocket knives have been seized under the guise of protecting the public. Millions of people have been harassed, assaulted, ejected and threatened under the guise of keeping the traveling public safe. Enough is enough.

Looking in from my place, the agency is nothing but a group of domestic terrorists. They have implemented policy that discriminates and degrades to the point of instilling fear. That is terrorism.

It’s time to realize that bit by bit we have lost our Constitutionally guaranteed rights. I’m not talking the big, controversial rights. It’s the little drops of water that have worn away the touchstone of democracy. It’s the quiet stealth of the government peering into the windows of our lives. If you’re okay with peeping toms, than you should be comfortable with the way our government has snuck into every corner. I’m not okay with peeping toms. I’m standing at this point and loudly declaring that enough is enough.

#TSA  #standupnow

Wings

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And when you finally fly away
I’ll be hoping that I served you well
For all the wisdom of a lifetime
No one can ever tell

But whatever road you choose
I’m right behind you, win or lose
Forever Young, Forever Young~ Rod Stweart

 

Tomorrow, my oldest daughter turns 21. A magical, mystical age where although she will be an adult for all intents and purposes, she’s still my little girl. This is the baby that turned my world upside down. I was a young mother, 24 years old. I was also recently married (less than three years), recently relocated from West Coast to East Coast, hundreds of miles from family and in a culture I was still trying to understand (military).

I was warned that I would be overprotective and quite possibly overbearing with my firstborn. And I was. She would tell you I still am.

 

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Fortunately for her, I outgrew much of that as she gained siblings. My daughter blazed trails every place she went. She was reading to her siblings and then watching over them at school. Her sense of justice developed early and she stood up at every chance. Watching her grow up was fun and truly joyful.

Tomorrow, she will become a legal adult. She will travel the world. Her thirst for knowledge will lead her to successes we can only imagine. Her determination to do the right thing may rock a few boats, but I know she sleeps well at night knowing she has done the best she could to be true to herself.

Here’s to you Beanie Baby…happy birthday and may all your dreams come true.

 

 

 

 

Dear “Autism Parents,” We Don’t Want To Be Cured

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tp25593's avatartomplastow

There’s a worrying trend among parents and carers of autistic children: trying to cure autism. Be it through training autistic children like dogs, sending them to special schools to be “controlled,” by donating money to organisations like Autism Speaks (widely held to be a hate group by autistic adults) in the hopes that their research can find a “cure” for autism, or even through drinking bleach (seriously)- a large number of “autism parents” want to see the end of autism. If you’re unfamiliar with the autistic community then you may ask why this is a problem: what’s wrong with wanting to cure autism?

Everything. Everything is wrong with wanting to cure autism.

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Autism is not a disease, it’s not a sickness, and the vast majority of autistic people do not want to be “cured.” Autism is a huge part of us, and removing it would radically change…

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Advocate

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Earlier this week, I was asked why I advocate. The discussion was both about my own advocacy in pursuit of healthcare and the advocacy I do for people affected by disabilities. As I tried to explain that being a “sheeple” was not in my nature, the following two pieces came to mind.

“Once, on ancient Earth, there was a human boy walking along a beach. There had just been a storm, and starfish had been scattered along the sands. The boy knew the fish would die, so he began to fling the fish to the sea. But every time he threw a starfish, another would wash ashore. “An old Earth man happened along and saw what the child was doing. He called out, ‘Boy, what are you doing?’ ” ‘Saving the starfish!’ replied the boy. ” ‘But your attempts are useless, child! Every time you save one, another one returns, often the same one! You can’t save them all, so why bother trying? Why does it matter, anyway?’ called the old man. “The boy thought about this for a while, a starfish in his hand; he answered, “Well, it matters to this one.” And then he flung the starfish into the welcoming sea.”
― Loren Eiseley, The Star Thrower

This reflects my own struggle to get doctors and healthcare professionals to understand that I am deserving of their time. I have recently been feeling that my health is only a priority to me. My last set of physicians dismissed me while I was medically unstable because I “used too many resources.” Fortunately, I believe I am now with a group that is interested in my care. The last two weeks, I been able to establish care with providers who have taken the time to hear my story. They have not dismissed my illnesses as psychosomatic. I am now receiving the care that should have been happening for the last two years.

“First they came for the communists, and I did not speak out—
because I was not a communist;
Then they came for the socialists, and I did not speak out—
because I was not a socialist;
Then they came for the trade unionists, and I did not speak out—
because I was not a trade unionist;
Then they came for the Jews, and I did not speak out—
because I was not a Jew;
Then they came for me—
and there was no one left to speak out for me.”

― Martin Niemöller

I have considered this piece as one of the most important lessons that came out of World War II and the Holocaust. It projects the effects of apathy on the human race. For me, it gives the impetus to advocate for those whose voices may not be strong.

Both pieces highlight the importance of doing something…whether for yourself or someone else. When you turn away from others, you are denying yourself the opportunity to lift someone else up. And there is really nothing quite like the feeling of making a difference.

Brewing Storms

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Disciplining yourself to do what you know is right and important, although difficult, is the highroad to pride, self-esteem, and personal satisfaction.~ Margaret Thatcher

This past week has been mixed emotionally. I’m finding more people who are struggling with the healthcare facility I am no longer allowed to use. These people were treated badly…in some cases to the point where they left the facility in worse condition than when they started. What’s going on is at a minimum morally wrong. It could even be perceived as malpractice in some cases. And now I know that this facility is planning to abandon even more patients under the guise of providing those patients “better” care by “allowing” them to choose private providers. Those quotes are because the added expense of the co-pays will bankrupt many families.

So, what is right and important? As I explained to someone last week, raising awareness is the key. Bringing attention to the situation is not easy. I know that eventually someone will come across these writings or read my story elsewhere and it will make my life difficult because doctors can be a pretentious lot. I was told last week that my self-awareness about my disease processes actually works against me because doctors don’t like patients who have more knowledge than they do. I find it truly sad that there has been so much emphasis put on “partnering” with patients and now I know that it was never an even partnership. It was always going to be a very lopsided relationship with my opinion having very little value.

Pride is what inhibits growth. It is almost impossible to grow when you think you’ve already reached your peak. Telling people that their knowledge is invalid because they lack a medical degree is asinine. With all the information available at our fingertips, people are able to research their diagnosis and bring that knowledge to their doctors. I’m not advocating trading “Dr. Google” for professional training and knowledge. But, I have more time to focus on my conditions than my doctors do. Why shouldn’t I ask questions?

I’m not being prideful in my quest for raising awareness. I will admit that I am hoping for some personal satisfaction when I’m done. No one should be allowed to degrade people in the name of “helping” them. As this country moves toward universal healthcare, we need to watch out for each other. We need to call out the practitioners who choose quantity over quality. There is no shame in sharing knowledge and asking questions.