I stumbled across this article on a new-to-me blog that I’m now following. It has some great tips that I never considered when thinking about going to the emergency room as someone who has chronic pain and related issues. This blog entry is talking about CRPS, which is Complex Regional Pain Syndrome. It’s a chronic pain disorder that is separate from Fibromyalgia but can be a co-diagnosis with Fibromyalgia. Each disorder can also be misdiagnosed for the other. She goes into more detail with each bullet point, and you should click the link to see the reasoning why. I’ve begun using these suggestions at work and although it’s been a couple of years since I’ve broken down and gone to the ER, I’m going to be taking this advice.
Considering the Emergency Room? Here Are Some Pointers to Keep in Mind if You Have Chronic Pain. |.
- Make sure that you have a regular physician who treats your chronic pain.
- Show that you have tried to contact your regular doctor before you go to the ER … only using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication.
- Bring a letter from your doctor.
- Bring a list of medications.
- Work cooperatively with emergency room staff. It might not be fair, but if a patient comes in screaming and shouting that they need pain medication right away, the staff isn’t going to like it.
- If you have a CRPS card, hand it to them and ask for it to be put in your file.
- Ask for a nurse advocate or make sure someone is with you.
- If at all possible, use the same Emergency Department as the last one you went to, your pain will be that much more believable if you always use the same place.
- …keep a folder handy with all those details written down, as well as a copy of most everything I need to bring with me
Posted in advocate, Chronic Fatigue, Chronic Pain, Chronic Pain Disorder, diverticulitis, family, Fibro Fog, fibromyalgia, Fibromyalgia Men, Immune Compromised, Immunosuppressed, life, migraines, Muskuloskeletal Disorders, Pain, parenting, Sensory Processing Disorder, Vegetarian, women, Working Mom | 1 Comment »
Mini vent: There’s a support group I belong to, and the vent I need to make isn’t very supportive. :p Frequently people in this forum complain about the lack of government funding towards Fibromyalgia research. There are frequently petitions that are essentially and literally only “Fibromyalgia Awareness should be important! Get the word out!” and then 8,264 people sign that one while 2,937 more sign one that says, “Make the Government Aware of Fibromyalgia! Make the Government Support Fibromyalgia!” and every single one of them are angry.
The most recent post that tipped my kitten was:
“THE GOVT CUT THE FUNDING FOR YOUR DISEASE TO $0. GET MAD.”
Well… what I WANT to say is:
Don’t rely on the government. If you want funding to go to the right places, to the independent scientists that are invested in the research for Fibromyalgia or Autism or Crohn’s Disease or Alzheimer’s Disease or anything at all that you have an interest in then you do the research to find out who can be trusted, who is legitimate and taken seriously in the scientific community among their peers, and you donate to them yourself. Don’t invite the government into your home unless you have no other choice.
Fibromyalgia awareness and acceptance isn’t something you petition for. It’s something that you talk about. You educate people about. You create noise about it. You advocate regarding Fibromyalgia, and you self-advocate. You share information and research from peer-reviewed scientists and get your doctors involved in the discussion.
The government IS AWARE of Fibromyalgia. They’re not ignoring it. In fact, there was this huge announcement back in 2012 about Fibromyalgia being added to the list of recognized disabilities eligible for Social Security Supplemental Income (SSI) and Social Security Disability Income (SSDI). That’s a big fat statement right there that the government recognizes and accepts Fibromyalgia as legitimate.
Finally, if the government cut funding to NASA, who is responsible for things like better mattresses, coats, boots, and many other social advances that make us happy, the government sure as hell isn’t going to fund Fibromyalgia research.
I’m not going to get mad. It’s not that I don’t want the funding. I think it would be fabulous. We need it. We just need more discussion and education and advocacy out there and we need to do more than create silly petitions that only rile people up and don’t accomplish anything real.
Posted in advocate, family, Fibro Fog, fibromyalgia, Fibromyalgia Men, life, motherhood | Tagged Fibro, fibro research, Fibromyalgia, funding, silly petitions | 1 Comment »
I think it’s important to share the opinions of Actually Autistic people. I’m non-autistic, so even though I’m a parent of an autistic daughter, my opinion doesn’t mean quite as much as that of Actually Autistic people. Before I share my thoughts, this is a great blog entry, shared with permission, from Thoughts from an Autistic Vegan: What’s wrong with Autism Speaks from an Autistic point of view. I’d like to thank Autistic Vegan again for letting me share this.
What’s wrong with Autism Speaks from an Autistic point of view
It seems everyone is aware of autism these days. I can’t think of anyone I have met, who has never heard of autism. Autism Speaks has made sure that we are all aware. Their latest awareness piece came in the form of an article in People magazine, proclaiming Bob and Suzanne Wright to be heroes, battling the autism epidemic. Battling. Epidemic. The hate speech never ends with Autism Speaks. It is as if they are unaware that Autistic people don’t want you to go to war with our brains. My family became aware of our own autism, right at the same time that Autism Speaks was getting off the ground, and becoming a widely known entity. So they made sure that we knew that autism was something to be afraid of. My Autistic son was 5 years old in 2009, when Autism Speaks stated, “I am autism…. I work faster than pediatric aids, cancer, and diabetes combined. And if you’re happily married, I will make sure that your marriage fails.” http://autisticadvocacy.org/2009/09/horrific-autism-speaks-i-am-autism-ad-transcript/
Where are the help and the resources? OT services could be provided for families to get help with understanding their children’s sensory needs. Communication devices to help people communicate more effectively with their families would certainly help many of us. No, fear is all Autism Speaks has to offer. Autism Speaks raises millions of dollars with their pity campaigns, and yet, only gives 4% back to families in the communities. http://loveexplosions.net/2014/10/31/oops-they-did-it-again-autism-speaks-2013-financials-just-released/
My son was only 2 years old when Autism Speaks made a documentary called Autism Every Day. This movie is a pity party for parents of Autistic children, the worst part being when a mom talks about wanting to drive her Autistic child off a bridge, while her Autistic daughter is in the room, and says she only did not do that because of her other, non-Autistic child. http://tinyurl.com/nnhveky These are the things that do the most damage. Autistic children are murdered by their parents at an alarming rate. Yet, in the media, which Autism Speaks is always at the center of, this is excused. People lament the lack of services, think of the martyr parents, and shake their heads at the unfortunate lot in life to have an Autistic child. http://www.autistichoya.com/2013/03/honoring-dead.html In their most recent documentary, Sounding the Alarm, there is more of the same. Over and over again, the message from Autism Speaks is that autism is an epidemic to be battled. They don’t take the time to talk to Autistic people of any age to get their opinions on what services are needed, or what message should be sent to the world at large. Instead, they speak to weeping parents, and call for more services as they exploit Autistic people’s darkest moments for profit. They show a complete and utter disrespect for Autistic people in every action that they take. Because of this, it is very difficult for me to tell people that I am Autistic. I know it changes their opinion of me, because of the lies that Autism Speaks told them about people like me. No organization has done more harm to the community they claim to help. It makes me sad that they are the leading resource doctors, therapists, businesses, and everyone else, looks to when seeking information about autism. How can they be the leading resource when they do not even consult with Autistic people in any meaningful roles? https://www.autismspeaks.org/about-us/board-directors It’s time for people to stop listening to Autism Speaks, and start listening to Autistic people.
This blog entry has several things going through my mind. First, I think I’ll let this marinate a little while for you guys to read. Then I’ll post my own thoughts. But first, please let me emphasize this for other non-autistic parents of autistic children: our children’s opinions on autistic matters including themselves are more important than our own. Who knows what’s better for someone than the people that are having policies and decisions and social discussions about them? I think this reblogged entry I just shared is one that we need to pay attention to, because it’s a common theme among adult autistic self-advocates.
Posted in advocate, ASD, autism, family, life, motherhood, parenting, Sensory Integration Disorder, Sensory Processing Disorder | Tagged autism, Autism Speaks, boycott autism speaks, how to love parenting an autistic child, parenting, reblogged What's wrong with Autism Speaks from an Autistic point of view, Thoughts from an Autistic Vegan, why autism speaks is bad | 1 Comment »
Psychology Today shared an article called Why French Kids Don’t Have ADHD. I keep revising this post because I really don’t want to come off sounding preachy or as if I’m offended when what I really am is exhausted and frustrated with the attitude that the article perpetuates. There is a very permeating attitude in the U.S. as well as France that ADHD and ADD not only are overdiagnosed, but don’t exist. I’d like to suggest that instead most people aren’t aware of what having ADHD/ADD actually entails.
There’s a very stereotypical view of ADHD of hyperactive boys running around screaming, throwing things and wrestling with classmates, or exhausting poor mom to the point of mom having to simply shove her child out the door to burn off energy “somehow.” And the comments that follow are usually along the lines of the child simply being a child that needs fresh air and any behavior problems can be solved with More Strict Discipline a.k.a. Spanking or A Good Whipping or better yet…. Just One Day At MY House.
Yes, these types of comments are common.
- Don’t you know that ADHD is another way to say, “My disciplinary skills as a parent are a failure and now I want to medicate my child?” You need a second opinion. Oh wait… did you doctor shop? Discipline is a small part of ADHD. You can be the most strict, loving, firm parent there is and your child can still present disciplinary challenges like none you’ve ever seen or expected. ADHD is not a reflection of a parent’s failure to discipline. It does take time to figure out what type of discipline works best in certain situations, but as with Autism, what may work one day may not work another day.
- ADHD is a junk diagnosis and doesn’t exist; it’s a lazy label; why are you labeling your child with a diagnosis that isn’t even real? Parents who have one or more children ADHD/ADD will tell you it’s not a junk diagnosis. It’s an answer for what’s happening in the child’s life that will hopefully help them be able to address what’s happening in a different way. It’s an ability to identify a group of behaviors and patterns of thought in order to help the child learn coping skills, and the parents learn different parenting skills for that child.
- Ah, ADHD, a diagnosis for, “Normal childhood behaviors that we don’t want to deal with and would rather medicate” ADHD is not automatically something that is medicated. Medicating a child is serious business, and the only one that should be prescribing a child medications like that is a Developmental Behavioral Pediatriatrian, a Pediatric Neurologist, or a Child Psychiatrist with the agreement of both parents. And for the record, teachers and principals have nothing to do with the decision making process and can’t make ultimatums regarding medicating a child whether the child is pre- or post- ADHD diagnosis.
- When I was a child those doctors put me on Ritalin and it turned me into a zombie… meds are terrible and doctors just want to get your money because they’re all controlled by BigPharma! First, who actually says Big Pharma? ;-) Conspiracy theorists who need an evaluation themselves, ha ha. I keed, I keed, but seriously. Second, if a medication makes someone feel “like a zombie” that’s an indication that a medication is either an incorrect dosage or it’s the incorrect medication. Period, full stop.Additionally, pharmacies and pharmaceutical companies are in the business because guess what? They’re businesses. In order to stay in business they’re allowed to try to make money. It’s not unethical for them as businesses to expect payment for their product a.k.a. medication of any kind. They need to be paid for their services just like anyone else, even if some of the meds cost less than a penny per unit to produce. They’re marked up due to not only the ingredients used, the development for new medications, use of the equipment, paying for transportation of medications and paying their employees. People who work in pharmaceuticals deserve to be paid fairly, just like anyone else. Medicine is a business. Doctoring is a business. Services rendered deserve payment.
- Really? You think it’s ADHD? Don’t you think a more natural approach would be best? People who jump to medication just don’t think things through! There’s an automatic assumption by many that the purpose of an ADHD diagnosis is to get the child medicated. There’s also an automatic assumption by people that Medications Are Bad. Again, medicating a child is serious business, not to be taken lightly. Most parents don’t enter that decision lightly one way or the other.Additionally, most parents I know that parent children who cope with ADHD do indeed use every natural method possible first… and even once medication is started, we/they continue using those natural methods in order to minimize the dosage.
- I’ll bet you’re one of those parents who’s completely opposed to medication? God, those people are so judgmental and don’t think things through! Again, assumptions. There’s nothing wrong with being opposed to medications for ADD or ADHD. Parents are allowed to make that choice for themselves and their children. My only hope when it comes to medications is that whichever decision is made… to medicate or not AND whichever homeopathic or naturopathic or dietary methods… or even a combination of all of these methods is used is that they are ALL well researched. There isn’t one single perfect formula. Every child is different.
- Oh, you need to get the school off your back. You can’t allow teachers to do that to you. They pressure parents constantly to get the diagnosis because they just don’t want to deal with children, they can’t control classrooms anymore. You know they just want you to medicate her so they don’t have to control her natural exuberance! This is my favorite. Teachers can offer their opinions, but no one at the school, not even the school psychologist EVEN IF a neuro-psych evaluation is performed by the school (and only with your permission, by the way, by way of a PPT) can diagnose ANYTHING including ADHD. A neuro-psych from the school can back up a private evaluation; it can stand alone as a way to help target your child’s strengths and challenges in order to figure out how best to teach your child and individualize their education plan (IEP). But they can’t diagnose. This is why if you ever suspect ANYTHING of your child medically or neurologically you MUST get an independent evaluation because your IE will trump the school’s IE if your child needs services and the school’s IE is a bit, mmm, lackluster.
- Why are you so eager to label your child? Everyone has a label these days! There’s a diagnosis for everything! What makes you think ADHD is such a good label? It’s not! It’s going to follow him/her for life! This one is worst when it’s the Autism diagnosis… it’s hurtful. I’m not a “label happy” parent. Unfortunately, I’ve seen so many parents who suspect their child is on the Autism Spectrum but refuse to get their child evaluated for services due to a fear of a “label.” What some individuals don’t realize is that the “label” is a medical diagnosis which is intended to help the child who will grow into an adult. The diagnosis is intended to help target services in order to best teach that child; in order to best adapt the environment; and in order to ensure that the child has a level playing field to his/her peers. So yeah… “labels” are kind of a good thing if your child needs services and you need to identify the type of services. If it means your child will get the best education possible, get over your dislike of labels. Fast.
- ADHD is such an over-diagnosed bunch of crap! This is another way of saying that ADHD (and Autism) is diagnosed far more often than it was back in the 60’s, 70’s, 80’s or whichever romanticized decade or century they’re thinking of when no one was ever sick, no one needed medications or doctors or hospitals. There’s a reason for that. Better diagnostic tools. Parents being more educated when they suspect something is going on with their children. The internet. And with the internet there are even teenagers and tween that are looking up their own symptoms when they realize they’re not quite like their peers in how their brains work, and they approach their parents with the request for an evaluation.
- Back in my day as a child, no one was ever diagnosed with anything! It’s all the crap in our food and environment! It’s vaccines! The government is poisoning us! So very much conspiracy theory to address. There’s a reason people weren’t diagnosed back in the day. This one is often paired up with the previous comment, and the reasons why people weren’t diagnosed back in the day are the same. The children who had ADHD and ADD were the “space cadet” kids and the class clowns. They were the eccentric kids who couldn’t get their shit together no matter how hard they tried. If they were Autistic AND had ADHD, they were institutionalized. Kids with severe ADHD were threatened with military school. They were often high school drop outs. They had a lot of run ins with law enforcement.
And if you want to know my stance on vaccines, go to my search bar and type it in. Go ahead.
- But forcing children to sit all day in school is unnatural! They’re supposed to be in fresh air playing ALL DAY LONG EVERY DAY! Really? Stop romanticizing the past. And also, office jobs. Any jobs indoors. Most jobs require people to sit, stand, or otherwise stay still for moderately long periods in order to be able to focus on job functions. Not to mention movies in a theater. Meetings. Appointments. Many different types of social interactions. This is a skill that not everyone is naturally capable of. Children need to be taught this skill to begin with, and for some, their neurological differences make learning this much-needed skill a challenge.
- ADHD huh? You know what I did when the teachers and doctors told me my child has ADHD? I took my kid out of school to homeschool and you should too. I like to ask how things are working out in situations like that, but I’m evil that way. Most often the “school day at home” lasts all of two hours with the two hours scattered all throughout the day because Junior can’t sit still or focus or isn’t interested. And the child isn’t learning a damn thing. PLEASE NOTE: I’m not slamming homeschooling. I think when it’s done right, it’s a great tool. If you’re doing it right, I’m not talking about you and I’m not talking about homeschooling in general. I think homeschooling can be fantastic. I even think it can be fantastic for some Autistic kids and some kids that have ADHD. The point I’m trying to make here is that when there’s been a diagnosis by doctors regarding ADHD/ADD; when a school has performed an evaluation that indicates ADHD/ADD backing up a doctor’s diagnosis; and the school and doctor are trying to help with an education plan or 504… accept the help that’s offered. ADHD isn’t a life sentence. It’s an answer. Autism isn’t a life sentence either. It’s an answer to a collection of challenges and differences to help understand what an individual needs to cope in a world that’s not made for neurodiversity.
- Let that kid spend a couple HOURS in MY house; they won’t have “ADHD” or any other “disorder” when they leave! Yeah… um… none of my children will be spending ANY time alone in your house without me present. And we just might not be spending much time with you at all. This judgmental statement says everything in those few words with the added tone that violence would come into play.
- Spare the rod and spoil the child, I always say. The Bible says so. If you don’t use REAL discipline then they won’t mind you. The insinuation here, of course, is that children with ADHD and/or Autism aren’t disciplined, and being disciplined isn’t an expectation from the parents. The judgment is that discipline isn’t Discipline unless physical corporal punishment is involved. Except that corporal punishment is, in my experience, physical abuse. It instills fear, not respect. And ADHD and Autism aren’t about obedience, blind or otherwise. They’re about Neuro-diversity.
Additionally, I love it when people misunderstand this phrase. The phrase is actually saying to use spanking/hitting with a rod/switch sparingly because if you use it too often, the method of intended discipline will be spoiled ie. it won’t work. The Bible never once endorses abusing children. It’s amazing to me how some parents build an entire discipline of spanking philosophy around this single phrase without ever understanding what it really means.The fact is that you don’t need to physically harm a child or induce fear in a child to have them respect you. Loving them and respecting them and treating them well, treating them like people instead of miniature selves that simply need to obey instructions raises up respectful, kind, loving children. Discipline in it’s actual definition means “to teach.” Use discipline the way it’s intended… teaching. Trust your children to be able to learn without threats and physical harm no matter what the parental intent is behind it.
- That kid just needs a good beating! No one needs a beating. Trust me. The way many adults “discipline” children would land them in jail if they treated other adults the same way because when you do it to adults it’s called assault and battery. Plus, see above response to above common comment.
- That kid just doesn’t have enough responsibilities; they’re allowed to get away with too much and has too much time on their hands. Again, assumptions. In the majority of parents I know who have children with ADHD and/or Autism, responsibilities and independence and learning these skills are very important. We are, after all, raising adults.
- Where are the parents? Doing what they can to help their child learn coping skills, independent living skills, how to be responsible, and how to become a productive member of society just like every other parent is doing with their non-ADHD and non-Autistic children… while also recognizing that not every single moment of life has to be a teaching moment or disciplinary moment. Parents don’t cause ADHD. A child doesn’t cause their own ADHD. It’s neurological, and most often it’s genetically inherited. Oh boy, is it.
So. There are a lot of things wrong in each of those statements, paraphrased in all different ways all over the internet and in real life. I’ve heard nearly all of it. I can’t understand a lot of these comments because until I had a children that are neuro-diverse (one who is Autistic and one with ADHD and ODD) I was exactly the same way.
I was a perfect parent until I had children.
Parenting in general changed me. Parenting children that provide certain parenting challenges that aren’t exactly typical… that changed my entire way of thinking. It humbled me. It educated me. I thought that half the battle was discipline and parenting, and the other half was part diet and part biology. I thought that some parents just might not know how to handle energetic children.
I was only half right.
Discipline, parenting, diet, all play a very big part. That’s the nurture part. But biology… neurology… the nature part is huge. When something is part of someone’s neurology and how their brain actually works then it’s time to sit up and pay attention. The fact is that the majority of people don’t have ADHD, just as the great majority of people don’t have Autism. ALL people who have ADHD and/or Autism have different neurologies than individuals who aren’t neuro-diverse. The fact is that even though diagnoses seemed to have increased, the amount of children who are Autistic and have ADHD has not increased. It’s just that Autistic individuals used to be institutionalized. If someone had ADHD they were a problem child. And very, very often individuals with ADHD have additional neurological differences like learning differences that need to be addressed and they weren’t. Those children weren’t identified the way they are now. That’s big. That’s GOOD.
So, when I read comments like that whenever the topic of ADHD (and even Autism) comes up, I see how they rile up other similar-thinking individuals who make the sort of comments I shared above. The common thread is that children and teens with ADHD are simply high energy that need to have that energy burned off and the parents are just burned out or lazy; that the kids are viewed as hard to handle, misbehaving monsters; have parents that can’t control them and have given up; that these kids have parents who only want to put them in their place or don’t try hard enough to put them in their place. And there are always people who have opinions on whether to medicate or not; when it’s appropriate and when it’s not.
The ones that bother me the most are the ones who insist ADHD is really a label for lazy parenting and that ADHD is a junk diagnosis that parents want to medicate their out of control children over. If you fall on the side of the fence where this is what what you believe, I think that it’s misguided and misinformed and you need some more education on what Attention Deficit Hyperactivity Disorder and Attention Deficit Disorder actually is. It would be very beneficial to you and possibly to your friends who may have been hurt by your judgmental comments; and it could be beneficial to your own family members.
Yes, I realize that this particular entry hasn’t addressed in depth what ADHD entails. I’m saving that for another post, and I hope to address it from the point of view of girls having ADHD.
Posted in parenting | Tagged ADHD misconceptions, attitudes about ADHD, myths about ADHD, silly things people say about ADHD, stupid things people say, what people say about ADHD | 1 Comment »
I ended up wearing rainbow colors that day that I wrote about doing anything, even wearing blue. I just… I realized that supporting her meant more than wearing the blue because it’s her favorite and she asked me and she thought I’d be celebrating her. It meant so, so much more and I tried to explain why I wore a rainbow-flower skirt with a purple shirt (my own favorite color) in a way she could understand. But how do you explain that wearing blue, lighting it up blue, is a trigger event and silences Autistic Voices? That anything explaining away why it’s okay is really not okay?
And that’s what I think I did in that entry, and I wholeheartedly apologize, no qualifications.
So how did I explain to my daughter why I broke the blue promise…
Rainbows and flowers are love, and everyone loves flowers. Autism is full of wonderful colors, not just blue, and even if the flowers in my skirt were fuzzy at the edges they were far prettier than puzzle pieces all over the school walls. She nodded in agreement.
I told her that I wanted her to be able to choose from all of the colors in the rainbow when she’s making friends, when she’s thinking, when she’s getting dressed, when she’s looking outside, all just like when she’s painting or making crafts. She nodded more with each example.
I told her that an agency named Autism $peaks created the Light It Up Blue idea, and that we don’t like all of their ideas because some of their ideas include wanting to cure Autism. I asked her if she remembered hearing about that several days before, and she nodded with a Very Serious Expression on her face.
Then I explained that there are other supportive agencies that want to help her and others like her grow and be happy, and learn to be a self-advocate as she grows up and becomes a teenager and an adult.
I explained that sometimes we were going to have to have different kinds of conversations now about how some people think Autism is not a good thing and how we can change those ideas by showing them the good things and teaching them about the ideas that they don’t quite have right. That sometimes people believe things about Autism that aren’t true, but that we can help educate them. She nodded. She seemed to like the idea of being an educator instead of the student.
I explained that there would be times we would be talking about the better ideas that Mommy has read about from the good agencies so that Mommy can better understand who is a helper and who is not… and that I think she’s getting old enough to learn those things too.
She nodded her head, with a furrowed brow, and said, “Mm hmm.”
“Do you have any questions?”
“Can I still wear my blue skirt?”
“Yes. Always. You can even keep blue as your own favorite color.”
“Mm hmm. Yes.”
“Do you want to ask me more?”
“I don’t know.”
She walked away. So that was that.
Posted in advocate, ASD, Autism Ally, daughters, disability, family, life, marriage, ODD, parenting, PDD, school, Sensory Processing Disorder, sisters, women, Working Mom | Tagged ASD, Autism spectrum, Autism Spectrum Disorder, Family, Middle school, Mother, parenting, Sensory Integration Disorder, Sensory processing disorder | Leave a Comment »
Great way of showing what I’ve been trying to say, but more succinctly. Check out this post below from Jess at Diary of a Mom.
communication | a diary of a mom.
Posted in advocate, ASD, autism, daughters, disability, family, life, motherhood, neighbors, parenting, Sensory Processing Disorder, women, Working Mom | Tagged ASD, autism, Autism spectrum, Family, Mother, parenting, PDD, Sensory processing disorder | Leave a Comment »