I’ve been sitting on this one for a while, but I think it’s still important to share how teaching self-advocacy skills to our autistic children is one of the most important things we can ever do. Our children need to learn to feel empowered at an early age so that they never, or rarely, have to worry about being taken advantage of due to their disabilities. Teaching them that their voices matter and how to frame their needs to the people who need to hear them begins at school age, and not just when they arbitrarily reach the magic legal age of 18 years old or 21 years old.

We need to presume competence, that they are capable and recognize self-advocacy skills as a need.

At the end of the year PPT last year (school year 2013-2014) I managed to get “the small bus” (as she calls it) because Sweet Girl asked for a ride other than the Big Bus that the other kids ride.  At first she was upset because the small bus isn’t the van, but it’s also not what the other kids use.  Clash.  A main problem with the bigger buses is that they’re not sensory friendly. There’s also no shortage of bullies on these buses, especially for middle school, and the drivers don’t do anything about it.   Additionally, neither of her sisters would be riding with her to help her tolerate the regular bus.

It didn’t take her long to appreciate it the small bus. She hears stories about the regular bus.  She would have rathered I drove her in, but that wasn’t an option.  The real push came with the after-school programs where she got the Golden Chariot… otherwise known as the Carrying School Children White Van.

“It feels great!”

She started campaigning for it for pick-up in the mornings and for everyday drop off.  She simply said that it’s better.  I had thought she was ok on the small bus but that presented sensory problems too.

And then  I told her that her PPT was coming up.  She insisted that she doesn’t need one, they’re horrible, they’re for babies, and she doesn’t want to attend.  Ok, fine, you don’t have to attend, but you still have to contribute.  And I told her that I was overriding her on the not-having-a-PPT thing.  That prompted her to ask with all seriousness,

“What is a PPT?”

She asked it with the sincerity of really wanting to know for the very first time.  I decided right then and there to explain exactly and bluntly what the PPT and IEP is for, and why she has it but other children don’t.

Presume competence.

“You have a PPT to figure out an IEP.  PPT stands for Planning and Placement Team.  So when I say I’m going to your PPT, that means I’m going to your Planning and Placement Team meeting.  We meet at the school in a special room to make plans for the school year so that we can work together as a team to make sure that you get the best education in the way you learn the best. OK?”

“Yes.  PPT is a funny.  What is IEP?”

“It sure is.  IEP is what the PPT tries to make.  IEP stands for Individual Education Plan.  That means that your whole team including your mom, your teachers, your vice principal, and all of the people you see every day that help you learn things… we all put the PPT together so that we can figure out the best way to teach you the things you need to know to help you learn skills to be independent.”

“I am already independent! I am not a baby! I am at a high level!”

“Ok, yes. You are very independent and you are a great self-advocate.  You are learning to read higher level books all the time.  You do a great job.  Do you want to know why?”

“I do not know.” ::grumpy::

“Because at every PPT meeting when we talk about the IEP, we talk about the ways that you learn best.  We want to help you use your talents and your superpowers so that you can learn to overcome your challenges.  Like, you know how math is hard sometimes?”

“I do not like math.”

“I don’t either.  Join the party.  But having an IEP means that your teachers will give you some extra help.  Some of the other kids might find math really easy.  Some of the other kids might find it really hard like you do, but they won’t get the extra help the same way you do.  They’ll get help, but you get to learn at your own pace and in the way you learn math the best. ”

“Hmmm.”

“In other subjects, you might not need any extra help at all because even if you have extra challenges in math, you might have extra talents in art.  Did you know that not everyone can make wonderful art? I hear that you’re really amazing in woodworking class and a lot of the other kids are having trouble.”

“Yes, I like it.”

“During the PPT meeting, I also get to ask for things that will help make your learning easier for you.  That’s why it’s important that you come to the meetings when you think you can do it or you talk about it with me and write something down for me to tell the rest of the team.  Do you want to know why that’s so very important? YOU are part of your team too, especially because YOU have been such a great self-advocate and are becoming so independent. “

Suddenly her eyes lit up.  I could see that she heard every single word I said and she was taking this very seriously.  For the first time ever, we were having this conversation where she wasn’t making angry assumptions about the PPT.

“Do you want to know what else? I know how important it is to you that you get to make decisions for yourself.  I know you don’t want me to make all of your decisions for you because you’re so independent.  I don’t want you to think that I’m making bad decisions and choices for you, and that’s why I want you at the meetings or to talk to me about what will make going to school easier and better for you.  I want you to be able to tell me how you think you can learn more easily.  How you feel and think is important to me and to the team.”

She got excited.  She had an idea.

“I need the van. My IEP needs the van every morning and every day. It is because of sensory. I need it for sensory. It feels better.”

She explained the why, and that gave me an edge in the PPT.

So at that PPT in October, because she asked me to request it (she now understands what PPTs are for :D) I advocated hard for it. I was told how difficult it is to get the van or any of the special service transport. They’ve always told me that. Luckily I have a good relationship with the DOT around here and they even called me to talk to me to see if the request was about my Sweet Girl. They made sure it was approved for the IEP.

And so within two days she had her first pick-up by the Golden Chariot.


There are tricks you learn when you go shopping if you have Fibromyalgia because if you don’t learn them there are physical and mental consequences.

  • Ask your primary care doctor to help you obtain a handicapped parking placard for those times when you really need it (print it off from the DMV web site)
  • Once you have it, USE IT even if when you first walk into a store you “feel fine” because when you walk out, you very well may not be fine at all
  • Don’t be embarrassed or afraid to use your cane; it can be your best friend and it can give people something visible to recognize about this invisible disease but if mornings are best then go in the morning
  • Create a routine that will help you feel your best before you leave; if you’re on a pain management routine then try to time it when your meds will be working at their peak best and you’ve just had a nice hot shower and relaxed with yoga, meditation, or prayer
  • Try to plan it during the time of day when you’ll be at your best functioning level; if you function best in the afternoon then go in the afternoon (ditto if you function best in the morning)
  • Try to shop when the temperatures and weather are most agreeable for you; winter temperatures and weather are difficult for me to navigate as my balance is terrible sometimes and I have Cold Intolerance meaning anything in the 60’s + are preferable
  • When you have no choice to but to run your errands in the weather that there is, really do make sure to dress yourself for the season in the way that you’ll feel best
  • Wear comfortable clothes and shoes, and keep a spare set in the car
  • Keep spare underwear in your go-bag
  • If you have to go shopping alone, you can still use your cane and a cart if you pull the cart with one hand and use the cane with the other
  • By the same token, if you need to use electric carts that you can ride, provided by the store then use them
  • Use a shopping list no matter it is you’re shopping for, and stick to the list
  • Check your gas gauge BEFORE you leave the house
  • Keep a GPS in the car or use the one in your phone; this is just in case an area you live in suddenly seems unfamiliar
  • When shopping for food, go with a time limit so that you “buy what you buy and that’s what you buy”
  • By that token, recognize that when you shop alone you have to be the one to load and unload the car (unless the store has someone able to help you load the groceries)
  • If you can, shop with someone but try to make sure they respect your time limit
  • When you need something on a low shelf (or high shelf) it’s 100% acceptable to ask someone for help with reaching; most people are willing to help
  • When shopping for clothes or shoes or {{{gasp}}} stuff at the mall , look at different stores online first to get an idea of what you want
  • Use the little carts or bags they provide
  • Don’t overload while looking if you have to try things on in the changing rooms; it hurts to carry too much or change in and out of too many things at once
  • Bring a bottle of water and a snack because you’ll be
  • Bringing spare prescription bottles with your medications so that you don’t miss your doses
  • Keep emergency contact numbers in your cell phone or written down in your purse or wallet, and if you have a medical ID bracelet then wear it (honestly, I need to get one soon)
  • Try not to take rude comments personally; the way people judge has nothing to do with you and everything to do with themselves
  • Expect comments regarding diet, medication, exercise, attitude, and assistive device assumptions and opinions based solely on a first glance; smile and nod and say, “Thanks for your concern. Have a great day.”
  • If you see someone you know and get to chatting, try to gracefully get out of the conversation so that it doesn’t take away from your functioning time (because it will) but be sure to swap phone numbers and set a time to call
  • Don’t add another stop to your trip no matter how good you may feel when you’re done with the planned trip because you’re going to need that energy and functionality to get your items into the house and put away
  • Take time to recover and rest before you perform any other tasks including chores; keep in mind what over-doing it does to you and that chores will always be there
  • All will be done in time

 

I do NOT guarantee these tips. Most of them work for me much of the time in helping manage the severity of my pain and chronic fatigue. Sometimes my body simply betrays me in spite of doing everything right before and during the trips, as well as in between trips.  My goal is to minimize the consequences of having to do errands.

When unexpected errand trips happen I try to keep them as short as possible.  I know that the more tired I already am and the more pain I’m start with, the longer that errand will feel and turn out. I end up with more pain and fatigue in the end, and of course that means more recovery time.

You know what’s best for you, and you need to listen to your body. Please listen to your body. Feed it well, rest it well, treat it well.


First… no shit.

With that in mind:

I’m just going to leave these here.

 

Study Finds No Link Between Induced or Augmented Labor and Autism. (Business 2 Community)

No Link Between Pitocin To Help Labor And Later ADHD, Study Says. (Huffington Post)

No Link Found Between Autism and Oxytocin-Induced Labor | Psych Central News.

No Connection Between Induced Labor, Autism: Obgyns – WebMD. <— This was published last year a year or so after the faulty “study” with the weakest of weak links was shared publiclly

Induced or augmented labor does not increase risk of autism spectrum disorder. (News Medical)

Augmented Or Induced Labor Does Not Increase Odds Of Autism. (Science 2.0)

Labor Augmentation Doesn’t Raise Risk of Autism, ADHD. (Neurology Advisor)

Augmented labor during childbirth is not associated with increased odds of autism — ScienceDaily

 

 

 

Since this same study tried to link Pitocin to ADHD:

Study Finds No Link Between Oxytocin and ADHD | Parenting Patch.


I’ve been sitting on this one for a while because it’s been too upsetting.  I had to adjust my language quite a bit and eliminate a lot (I mean a lot) of cussing and non-christian attitudes.  Still, my language in this entry will be strong, and yes, I will be stating my opinions as facts and probably not very gently because I think that this is a clear-cut case of showing what’s right and what’s wrong.  I think that there are instances where it’s necessary to be bold in our opinions, even judgmental.

I have never and will never speak in favor of electric shock therapy (ECT).  I don’t believe it has ever been useful.  I do believe that it’s one of the most harmful things we could do to someone. Until a few years ago when an online friend had it done to try to help with Bi-Polar symptoms, I honestly thought that it was non-existent.  It turns out that people do use it for Bi-Polar Disorder, Schizophrenia, Schizoaffective Disorder, and more.  And unfortunately people use it for Autistic patients as well.

I’m frankly astounded that it still happens today… yes, in America. Yes, right under our noses. And yes, it’s violent and abusive and horrific.  All you need to do is see video proof and read about the experiences of the individuals and their families about what happens, how it feels during and after, and how the “medical professionals” that perpetuate it often don’t allow the parents or caregivers of the abused individuals know exactly what happens.

It needs to come out that it happens, but more importantly the places where it occurs need to be called out, prosecuted, and shut down for the torture. It is torture.  The disabled individuals that report it and their families that report it need to be heard and believed.  Again… an inability to be verbal with voice, with sound, does NOT mean “unable to communicate.”  It means “communicates differently.”  And it doesn’t mean someone is Intellectually Disabled.  Speech, or rather lack of speech is not a signifier of intelligence.  This does not deserve electric shock therapy.

I’ll spell it out further.

An individual that’s disabled might not communicate with sounds that you understand or with sounds at all.  They may communicate using body language, with making pictures, with writing or typing, or find other ways to communicate.  Learn how to communicate their way rather than force them to learn “the normal way.”  YOU have to make as much of an effort to learn about your loved one’s Autism as your autistic loved one has to figure out how to cope with an unforgiving world that hates disabled people.

This does not deserve electric shock therapy.

An individual that’s disabled might not take their coat off when YOU think it’s appropriate but for them, they should be able to take off their coat whenever they damn well please.  The coat may provide sensory input that’s necessary, and a feeling of safety and protection.  Learn about the reasons why your autistic loved one is keeping on that jacket longer than is typically socially acceptable.  There are valid reasons.  They don’t have to be YOUR reasons.

This does not deserve electric shock therapy.

An individual that has a limited, restricted diet who may eat only a certain color of food; a certain texture of food; only three specific food items; does so for specific reasons.  We need to learn why and help them without force, using gentle methods and cooperate.  Yes, but nutrition.  Believe me, I know.

But this does not deserve electric shock therapy.

An individual that’s disabled might not immediately say hello and offer a kiss and hug to the person they’re visiting, but they have the right to Personal Autonomy.  They get to choose HOW to say hello, and may need time to warm up to the changes and transitions that are occurring before being capable of following through with social expectations.  And honestly? Sometimes it just might not happen.  The greeting may not happen but the rest of the visit might be jumped into with both feet.  Hugs and kisses ought NOT be expected with any person, honestly, but a simple hand wave hello or a gentle “hi” should be acceptable.   No means no.

And this does not deserve electric shock therapy.

You might be annoyed or even embarrassed by a stim (rocking, hand flapping, humming) but unless it’s actually putting the disabled individual and/or others in harms way or it’s truly excessively disruptive then you need to allow Personal Autonomy and let them stim.  When I say “excessively disruptive” or at inappropriate times, I mean during a public symphony or during a class test while running up and down isles and spinning in circles repeating (echolalia) phrases the teacher is saying; or there’s danger such as running and running and running and that running might end up in the middle of a busy street.  Stims have a very valid purpose, even several purposes.  Spinning, hopping, repetitive sounds and phrases, repetitive movements all have a purpose.  Making them stop, forcing them to stop, is not that’s helping them cope but it’s agitating unless you can help replace the disruptive stim with an equally soothing and less disruptive stim.  Or you know, find out why they’re stimming and see if there’s a solution.  There is no shame in stimming (perseverating) and while you have a right to be annoyed, you can tolerate it for a while.

Stims most certainly don’t deserve electric shock therapy.

Just because someone may have one or more disabilities does not mean anyone has the right to torture them.  They feel it all.  They know it’s happening.  They can’t always say no but all you need is to have some empathy.

Being disabled doesn’t deserve electric shock therapy.  Even if your disability is sociopathy.

Sensory processing problems that might be only the slightest issues to you and me could and often do seem like the most enormously terrible sensory experiences to autistic individuals.  Their responses are appropriate to unwanted sounds and touch that are actually painful to them, pain they can feel in their entire body and being even if it’s something we may not notice… a feathery touch may feel like a punch in the head… and yet what do these clinics do? The slightest, most quiet sound of a fridge humming might seem like a snow plow thundering down the street shaking the whole house.  A shady spot in the yard might seem like the brightest sun to you or me.  Forget ABA (which I’m mainly against)… imagine what electric shock therapy does to try to “stop” behaviors that result from sensory processing issues.  Just imagine.  Imagine yourself in that position.  You can’t force an individual to stop having sensory processing disorder or their responses to stimuli that is debilitating for them; you can only help them learn to cope and ideally, learn what the problems are and minimize exposure when possible.

Sensory Processing Disorder doesn’t deserve electric shock therapy.  It’s the worst assault on their senses possible.

Cognitive disabilities that contribute to learning delays and other issues in children and adults don’t deserve electric shock therapy.  You can’t ECT someone out of Cognitive disabilities or learning delays.

Just because someone may have one or more disabilities does not mean that they aren’t sentient beings that are able to think for themselves and make their own decisions whether they communicate the same way you do or not.  Imagine what the electric shock therapy does to their brains and thought processes… the REAL damage that’s occurring.  If you believe your loved one’s intelligence is “at stake” regarding diet, pollution in the air and water, vaccines, educational input, religion, what they watch on television, what video games they play… then what do you think electric shock therapy does?

Being disabled doesn’t deserve electric shock therapy.  Being intellectually disabled doesn’t deserve electric shock therapy.

BEING AUTISTIC doesn’t deserve electric shock therapy.

No one deserves electric shock therapy and it’s a major disservice in even thinking about electric shock therapy or endorsing it.  It’s essentially a punishment for being different and not being capable of passing as non-autistic, non-disabled, and having the utter audacity to behave as if they’re disabled rather than overcome the disability and pretend they don’t have one.

When parents and caregivers allow electric shock therapy, they are allowing torture and punishment.

It’s destroying faith and trust that their loved one had in them.  They don’t understand the purpose, and believe they’re being punished.  They believe they’re dying.  It teaches nothing except fear, and damages the brain that wasn’t damaged to begin with.

Something needs to be done.  It needs to be banned.  This is not a slippery slope thing.

I’m going to ask you to click this link below to the blog “diary of a mom.”  Read that entry and then watch the video.  It’s going to be torture to watch it but you must.  You must for the sake of the individuals who endure the REAL torture every single day.  You need to watch it so that the image is burned into your brain and even during the worst of the meltdowns that your child ever experiences and that you have to help him or her through, that you experience with them, when you feel that you might hate Autism itself and wish it didn’t exist, you remember that video and think about how lucky and precious your child really is.

judge rotenberg center | a diary of a mom.


Back in 2013, I posted this entry: Court Rulings DO NOT “Quietly Confirm” Autism-Vaccine Link | Ever So Gently.

The article referred to in it has been making the rounds yet again, so that particular entry deserves a comeback too.  I’m not going to devote a whole new pages-long entry about it, though.  I just hope that people realize that the supposed “court rulings” about the autism-vaccine link are complete rubbish and also have been debunked and didn’t come from a reputable source nor was the court reputable or even able to rule on it to begin with.

I just wish people who are so fearful of Autism would speak with or read blogs written by autistic self-advocates.  I’m not talking about non-autistic mommy bloggers of autistic children, youngsters or adults, but actual autistic individuals who are self-advocates.  Many communicate online with great effort or little effort even if in the physical world their social skills and verbal skills are challenged and perhaps have Non-verbal Learning Disorder or are non-verbal.

Non-verbal doesn’t mean unable to communicate effectively.  It means “communicates differently” than most people.  And what that means is that WE have to adjust our thinking.  Listen to the people who know even if the listening isn’t with your ears.  Don’t listen to the fraudulent rantings of people who have fear-based ideologies.

 


image

As a non-autistic mom to an autistic daughter, addressing the whole MMR Debate is probably the right thing to do right around now.  This is not a scientific, going to provide documentation and other specific proof sort of post because I’m not in the mood.  I’ve done it before and if you’re interested, there’s a link at the bottom to some of the things I’ll be referencing.  Plus I have a search tool on my blog.  And it’s my blog so I can include and exclude what I want.  I don’t get paid for this blog.  Ha.

The reason I’m addressing this now is because, of course, Measles is in the news nearly every day lately due to what started out as an outbreak that began in Disneyland.  To keep it simple: unvaccinated individuals that actively had or were incubating Measles went to the amusement park and passed it along to other individuals, some of whom were vaccinated with MMR and the majority who weren’t.  Of course the whole thing branches out from there and it’s getting bigger by the week.

Before I offer any opinion on this, which you can probably guess if you’re a regular reader, I need to get this out there:

Autism is not damage.  

It’s not damage caused by vaccines nor birth accidents nor “bad genetics.”  

It’s a difference in biology that creates a difference in neurology due to genetics.  

As a child grows, the autistic traits become more noticeable.  As a child grows, there may be things in the environment that trigger the traits that non-autistic people consider to be negative to occur more prominently and that’s why they’re called Environmental Factors.  

Most people don’t seem to know what that means.  They think Environmental Factors means “pollution, water quality, and food quality.” That’s only a partial truth.

From the WHO (World Health Organization):

Environmental health comprises those aspects of human health, including quality of life, that are determined by physical, chemical, biological, social and psychosocial factors in the environment.

I was going to say something really insulting and cutting about being anti-vax when someone is perfectly healthy but doesn’t care or understand a wit about social responsibility, but I’ll refrain.  

I was going to say something that had the word “rage” in it but I realized I don’t feel rage.  I feel pity.  

Ok, maybe a little rage.  I feel rage because people who don’t have the intelligence to at least state that they’re anti-vax because they “researched ingredients” even if they don’t know what that really means, don’t really know how to interpret what they find nor know which resources are reliable.

I feel rage because there are still people whose default position is “BUT AUTISM!” because THOSE individuals didn’t bother to find out the facts.  

Or maybe these groups? they chose to ignore the facts.  They choose the paranoid path that “they” give us limited information that’s not true. They think pro-vaccination standpoint is uneducated and misled.

There are some from both groups, of course, who willfully ignore actual science that’s been peer reviewed and completed by independent scientists who have no stake in the matter except finding the truth… who lose money for their efforts and aren’t affiliated with pharmaceutical enterprises.

There are those who can’t tell the difference between science and pseudoscience … and those who can but prefer the fringe and discredited pseudoscience.

There are those with “my opinion and my psychic say so” when faced with irrefutable facts and who will twist anything around to mean the opposite of what they actually mean to the point of accusing chemical biologists of making things up and being part of some “team” trying to control the masses by feeding misinformation intentionally.

Yeah.  That happened just today.

OF NOTE: Never, ever read the comments underneath articles.  No matter your viewpoint or opinion, just don’t read the comments.

I wrote this other post 4 1/2 years ago: 

Win For Autism Community: Andrew Wakefield Lost License | Ever So Gently.

It’s even more important now because this individual, this purveyor of deceit (Wakefield) is being held up as a misunderstood man whose honest research is being twisted and lied about. It’s not.

I was so full of hope in the ability of our society to bounce back from something that was damaging to the Autism Community worldwide and now it’s even more evident that it’s damaging to ALL individuals in the world who may ever become ill from vaccine-preventable communicable diseases… that are healthy and able to be vaccinated.

My faith in people in general and yes, particular individuals, isn’t nearly so high any longer.

I think it’s important that people keep the details fresh regarding what Andrew Wakefield did: he knowingly, intentionally, and willingly perpetuated a hoax regarding the MMR vaccine by falsifying a study and a paper that would earn him fame and legitimacy in the scientific community.

Let me phrase that another way.

The MMR-Autism paper written by Wakefield was without question proven dozens of times over to be fraudulent.  He committed a worldwide FRAUD and hoax by intention.  On purpose.  For fame and notoriety.  For the money that some people think doctors and pharmaceutical companies and scientists are “in it all” for. The people who use words like Big Pharma and think eating and living without doctors or medicine or “chemicals” will prevent any illness and block all communicable diseases.

Know this: Wakefield is reviled in the scientific community because he tried to pass himself off as a legitimate scientist.  This wasn’t some misunderstood poor doctor trying to help the world see that the MMR is harmful to neurology or gastroenterology for the majority of the population or even a significant segment.  

He wasn’t viewed as legitimate prior to the Lancet posting that harmful, damaging, ridiculous paper and wasn’t … ISN’T viewed as legitimate by the science community afterward.  The editor at the Lancet at that time didn’t catch that they had previously refused his other paper/s on other subjects that were ALSO FALSIFIED because they were in dire financial straits and needed to publish something.  It was simply bad timing that Wakefield (I can still barely type his name without wanting to disinfect my fingers and keyboard) submitted that horrifyingly damaging paper. Within the past 2 years the Lancet retracted that paper and apologized.

All that said:

There needs to be a dialogue about Vaccine Safety.  If there’s anything this entire debacle has shown the United States this is true.  

I’ve always been of the state of mind that we need to know what medicines we’re giving our children, why we’re giving them, how they’ll affect our children, how necessary they are, and the efficacy.  

I’ve always believed that even if parents make ridiculous choices we ARE entitled to choose how we parent.  

We need to get more people to figure out that short term side effects are not vaccine injuries.  

We need to get people to figure out that correlation of timeframe and other events is not causation.  

That opinion is not fact.

In regards to vaccines, I would not liken them to pulling a trigger on a gun if we do inject our children or if we don’t by risking them to highly communicable diseases unnecessarily.  I detest that comparison when either the pro or anti sides use it. The fact is that vaccine injury and allergies exist but in a miniscule segment of the population. The personal stories people tell make it appear like a lot but personal interpretation leaves a lot of room for misinterpretation and exaggerations in retelling.

However: When we demand that The Government steps in to legislate and compel people to have medical procedures done, to take medicines we would otherwise refuse, we are going down a slippery slope.  We are giving away freedoms that once we give them away will be nearly impossible to get back.  It becomes easier and easier to give more and more freedoms away.

And when we legislate medical procedures and medicine, we’re infringing very closely on causing harm to individuals who literally medically would die if they were forced to undergo what the majority of the population would be safe with.  We would be forcing a need for them to waste precious time and money litigating their way out of medical procedures.  We have enough of that occurring already with disabled individuals that we presume are incompetent because “we know better.”

I think it’s one of the most important conversations that we can have with each other.  

I’ll be honest, though… the instant someone says “Big Pharma” they’ve lost all credibility and all I hear after that is “blah blah blah invalid paranoia blah.”  

As soon as someone automatically and broadly tells me that science, scientists and doctors are all in on some enormous worldwide conspiracy with The Government/s to make us all sick and give us cancer in order to make money and control us, they’ve lost all credibility.  

As soon as someone tells me that I simply haven’t done the “right” research, and that their propaganda with pseudoscience and their wacky holistic family practitioner who thinks catching moonlight in a GMO-free poison ivy leaf bowl is good medicine is a great scientific resource and their web site should be “looked into” they’re no longer credible.

When I’m told that their opinions are more educated and valuable than peer reviewed scientific research that has been supported repeatedly… well you get the idea.

I think that dialogue mainly needs to occur with our doctors regularly. I think our nation needs to stop being afraid of education and science.  

Living a paranoid life sucks. The MMR Debate and Vaccine Versus Autism Debate are NOT the ways to go about discussing Vaccine Safety.  If you want to debate MMR and its veracity, don’t ever attach Autism to it.  

First and foremost this is because while Autism might be a difficult neurological difference for individuals to live with (not the parents, the individuals themselves) causing them various disabilities of varying degrees at various times, Autism is not a tragedy.  Ever.  It is not a vaccine injury.  It is not damage.

I’m really tired at the moment, so I’m sure I’ve missed a lot that I wanted to address and probably didn’t say all of what I wanted to very eloquently or with as few words as I should have.  Or, you know, succinctly.  :-)

Edited for grammar. ♡


I had a 6-month check up with my PCP on Wednesday.  Since my Fibromyalgia diagnosis, this has been something she insists on in order to see the progression of my pain and how I’m handling it.  She does what amounts to a physical except I get to keep my clothes on at these check ups.  

7 Kinds of Fibromyalgia Pain

7 Kinds of Fibromyalgia Pain

We talk about exercise (yoga and some walking) and my diet (vegetarian with little sugar, plus no HFCS or food dyes; reduced dairy and reduced animal byproducts).  She checks my weight (hey, I lost ten pounds since my last appointment!).  She checks how I move; motions I can and can’t make; triggers for pain and other issues; posture; word recall; language usage; asthma and lungs; ears; spine; skin issues; eyes; mouth; reflexes; asks questions about the pain itself regarding location and the nature and quality of the pain.  Um, I forget the term for that.  The… the… diffuse pain and describing what it feels like.  It has to do with the seven types of pain that Fibro-sufferers feel.  There’s an info-graphic I’ll have to try to dig up.

My PCP wasn’t happy with the progression of my pain because A.) the flare ups have increased in frequency and I rarely have occasions of tolerable or “feeling really good.” I have a majority of time where I feel sick from the pain it’s so high, and it affects my sleep, moods, and anxiety levels.  B.) Even when I’m feeling “good” the pain is high, which means my baseline pain, the pain I feel at the lowest possible pain level all over my body, can be distracting.  C.) I have a lot of breakthrough pain where I have to take something in addition to my daily med.  And yet, when I’ve accidentally missed a dose of the Gabapentin/Neurontin (only 200 mg, taken 3X a day = 600 per day), the pain is quadrupled.  I don’t feel side effects, I just feel pain so excruciating I feel like throwing up and wish for nothing but being unconscious.  I didn’t explain things quite like that to my doctor, but gave her an abbreviated explanation.  I tried to hold it in for the appointment.  

She was able to see through my bravado (I had one of my daughters with me) that I was in severe pain in spite of taking my meds exactly as prescribed, and with my insistence that they’re working and minimizing the pain. I insisted I was tired, it had been a long day, and the weather being so cold wasn’t helping matters.  She said,

“Mmm hmmm.  The weather.  Yes that has a grande effect but it can’t always be the answer.  You are doing everything right to minimize your disease and it’s not your fault.  But you know Fibromyalgia is progressive.  You are in a lot of pain.  I see it and you need something more than what I can prescribe.  Your current dose of Gabapentin is as high as I can go.  You take the Tramadol for breakthrough pain, but you don’t want to take it often and usage is increasing, so the answer is the pain management doctor.  I know you don’t want to do that, but my dear, you are at the point that you need it.  Please trust me.”

Sigh.

I had refused a referral to a pain management doctor a year ago and again six months ago.  I think this time, I need to trust her as she asked.  Luckily it’s one in my own doctor’s group, who has a great reputation, and my PCP knows her as a coworker in the same building.

Then she asked me about my current Rheumatologist.  

“So, my dear, I have your list of medications: one for allergy, migraine, one for depression, sleep, and one for pain plus the occasional Tramadol.  But I have nothing listed from your Rheumatologist.  What is she treating you with? How is she treating your Fibromyalgia?”

I told her the simple answer: She’s not.  You don’t see any medications or treatment plan from Dr. Rheumatologist because although she considers herself a diagnostician for Fibromyalgia, she doesn’t feel comfortable prescribing medications for it and believes it’s a sleep disorder.  She refuses to accept that an inability to sleep well is a result of being in too much pain to sleep.  She also believes it’s related to anxiety, caused by anxiety and depression refusing to see those things as being mainly/partially caused by Fibro.  She doesn’t even believe it’s a neurological disorder yet feels a Neurologist is better suited to prescribing Fibro meds or barring that it’s the job of the PCP.

I think my doctor’s jaw dropped. Her lips pursed and she huffed through her nose.

And then:

“Hmm.  I know a Rheumatologist who will accept this referral I’m sending, and since you have the diagnosis and this doctor is my colleague, he should accept you into the practice.  Fibromyalgia is one of the specialties.”

 

Guess what? I  had a message on my home voicemail when I got home from work today.  It was from the new Rheumatologist inviting me to call as soon as possible, and if I couldn’t get to them before noon today to call them on Monday to set up an appointment.  

Suddenly I’m remembering my prayer… and The White Rabbit.

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