Fibromyalgia and Me: What I Wish You Understood

To understand how Fibromyalgia effects me and what I deal with, you first need to know what Fibromyalgia IS and what it is NOT.

First, let's get the technical stuff out of the way.

There are a few different schools of thought among doctors and scientists, but the common thread to explain what causes Fibromyalgia is a hyperactivity of the central nervous system.  It's as if the "volume control" is set too high on pain processing.  [Arthritis Foundation: Fibromyalgia Causes]  It overlaps and is associated with a variety of other issues, including chronic fatigue syndrome, irritable bowel syndrome, post-traumatic stress disorder, and more. [Arthritis Research and Therapy]

Now, in simpler terms:

Fibromyalgia is pain.  Lots of pain.  All over the body.  And tenderness to touch.  Every person with Fibromyalgia experiences pain and tenderness.  Multiple other symptoms are associated with Fibromyalgia as well, but not every person with Fibro experiences all those other symptoms.  For example, many, but not all people with Fibro also have irritable bowel symptoms (gas, bloating, etc.)  Many, but not all people also have restless leg syndrome.  And the list goes on.

The pain experienced by people with Fibro is best explained by comparing it with the symptoms of the Flu.  Remember the last time you had the Flu.  Remember the achiness you felt in your muscles, the headache, the nausea, the pure exhaustion you felt.  Now, imagine that feeling never going away.  Imagine living with that feeling every day.  All day.

That is what Fibromyalgia IS.  Let me explain what Fibromyalgia is NOT.

Fibromyalgia is not fake.  It's not made up.  It's not something doctors use to label a bunch of symptoms that they can't figure out.  Fibromyalgia is not something people use to get attention or sympathy or a handicap parking tag.  It's not something we use as an excuse to not work and to lay around the house doing nothing all day.  Fibromyalgia is very real.  That it is not well understood doesn't make it any less real.

Perhaps this will help:

Brain scans of a healthy patient and of one with Fibromyalgia.

The blue coloration on the healthy brain demonstrates normal electrical activity. The additional red and white coloration on the brain scan of a fibromyalgia patient represents over-electrified brain regions. The brain is actually the “volt meter” that tells us how much pain we are experiencing, an over electrified brain will amplify incoming electrical pain signals from every nerve in the body. For this reason, fibromyalgia patients are much more sensitive to pain.  [Sponaugle Wellness Institute]

There it is, in red, white, and blue.  The brain of a person with Fibromyalgia responds differently to pain stimuli than the brain of a healthy person.  So, you can tell us that it's all in our heads, and we'll show you this brain scan and say, "Yes.  Yes, it is."

Fibromyalgia is not only pain and tenderness.  Those symptoms are experienced by everyone who has Fibro, but each of those people also experiences a broad range of other symptoms, and each person's symptoms are different.  Some people have Irritable Bowel Syndrome, and some don't.  Some people notice blurred vision, and some don't.  Some people suffer depression, and some don't.  This is what makes Fibromyalgia so difficult to diagnose and treat, because the symptoms people present with often mimic other conditions, so a diagnosis of Fibromyalgia is only reached through extensive testing and review of the patient's history and symptoms, in order to be 100% sure they're not suffering from something else, such as Lupus or Lime disease or Rheumatoid Arthritis, for example.

Fibromyalgia is not curable.  At least, not at the present time.  It can be treated by many different methods with varying degrees of impact on a person's symptoms.  It can be masked or even minimized to the point where the symptoms are barely noticeable.  But it cannot be cured.  I've read and heard many people say they know someone who took this drug, or did this exercise, or used this essential oil, or followed this certain diet plan, and their Fibromyalgia was cured.  Listen, apart from the miraculous intervention of God, Fibro cannot be cured.  If anyone tells you they've been cured by some other method, they are either lying, or they never had Fibromyalgia in the first place.  For this reason, please don't suggest a diet you've heard of or an exercise your friend tried or an essential oil you know worked for your aunt's arthritic knee.  Most of us will stick with our physician's treatment plan.  If we want to try something alternative, we'll come to you, or we'll just try it on our own.

Fibromyalgia is not like the headache you've had all day.  It's not like the sleepless night you had last night.  It's not like the leg cramp you had after you played softball on Saturday.  We know you mean well, but if you ask us how we're doing/feeling, and we tell you the symptoms we're dealing with at that time, please don't follow that up with, "I know how you feel.  This headache just won't go away today.  I've tried everything!"  We know you're trying to relate and to sympathize, but it comes off as dismissive, and it leaves us feeling like you weren't really interested in how we're doing/feeling.  If your headache never goes away, and you suffer with it every day for the rest of your life, well, THEN you can tell us you know how we feel, and we can commiserate together.  That is not to say we don't care about the fact you're in pain at that moment, because we do.  In fact, we may even ask YOU how you are doing/feeling after you've asked us, then you are welcome to share your pain, because we definitely know how you feel.

Fibromyalgia cannot be "fixed" by getting more or less sleep, or losing weight, or exercising more, or meditating, or being more positive, or getting out of the house.  People who suggest these types of "fixes" usually are those who don't think Fibro is a real thing.  They tend to think it's in our heads, and if we'd just do something about it we'd be fine.  Laziness is a vice they often attribute to us, though they usually wouldn't say that aloud.  They'll hint at it, though.  I've been told that if I would just lose weight and be more active, then I would feel better, and that I sleep way too much, which can't possibly help.  Losing weight and being more active probably would help some, but it's not a cure, and there is even a good chance it wouldn't change anything.

Fun fact:  you  may not believe Fibromyalgia is a real condition, but I feel real pain, I deal with real memory lapses, I fight real fatigue, and I suffer real stomach cramps.  It's real to me, and if you care about me, you will be supportive and caring and helpful rather than dismissive and suggesting I'm lazy by responding to my complaints with "If you'd get some more exercise, you'd be fine."

On that note, what is Fibromyalgia for me?

The short version is that in addition to the widespread pain and tenderness, I struggle with at least 20 other symptoms.  Some go hand-in-hand.  I don't experience all the symptoms every day, nor do I experience all the symptoms altogether at the same time.  But I do experience symptoms every day to varying degrees.

Below is my personal Fibromyalgia map, showing all the locations on my body that I experience pain, as well as listing the symptoms associated with specific areas.  I'll explain each symptom in greater detail following the map, and I hope that if you are someone who cares for me you will take the time to gain an understanding of what I deal with.  I'm not looking for pity.  Just to have my family and friends understand me, because I often feel as though most don't really understand, and maybe even get tired of hearing me complain.  I also know there are at least a few who don't give much credence to the Fibromyalgia diagnosis, and that's fine, but I'd like them to at least understand my very real struggle, whether they accept my symptoms under that diagnosis or not.  Further, I hope that this will also serve to help anyone else who may have a friend or loved one dealing with this, too. be better able to sympathize and understand them, too.

Without further ado, here is my Fibromyalgia map:

My Fibro Map: click to enlarge

Homeschooling in New York State: Q & A session #1*

Questions about homeschooling in NY?
Here are some answers!

"We decided homeschooling is the best option for our family, but we don't know where to begin.  How do we know what's required to teach?  What do we need to send to the school district?  Is Kindergarten mandatory?  What about testing?  Do I need to be a certified teacher?  Help!"

Over the life of this blog, I've encountered all these questions, and more, so I thought it was time to address all the questions I've come up against in one post.  Hopefully, you'll learn everything you need to begin your homeschooling journey or to streamline the journey you're already on.  In either case, good luck!  And always feel free to ask any questions I may have missed by commenting down below.

My child will be 6 on December 21st.  Should I send my Letter of Intent (LOI) now?  (A.K.A., what is the compulsory age of attendance in New York State?)

The compulsory age of attendance in NY is 6, however, the cutoff is December 1st, so if your child turns six after December 1st, then you do not need to send in an LOI or do anything else to alert the school of your choice to homeschool until the following school year.  For example, if your child turns 6 on December 21st of 2016, then you would not need to send in your LOI until the 2017-18 school year.  If, however, your child turns 6 on or before December 1st, then, yes, you will need to send your LOI to the district for the current or upcoming school year as per the state's regulations, which I'll discuss a little later on.

Is Kindergarten mandatory?

Technically, there is no "grade" that is mandatory.  All NY requires is that children be in attendance beginning at the age of 6 until the age of 16.  As far as homeschooling is concerned, you are free to decide at what "grade" level your child should work.  If you feel your child is too advanced for Kindergarten when you begin schooling, then you are free to begin them at 1st grade or any other grade level you feel is appropriate.

Do I need to de-register my child from their school?  The school told me I need to come in to sign some forms before I can take my child out of school, is that true?

Simply put, no.  If your child's school insists that there is something you must do - some paperwork to fill out or forms to sign or procedure to follow - before they'll "let" you withdraw your child from school, then be prepared to confront them with the state regulations. If your child is of compulsory attendance age, there is nothing you  need to do other than to turn in your Letter of Intent as outlined in the regulations.  If you feel your child's school is going to give you a hard time in this area, you may want to have a copy of the state regulations on hand with which to make your point and to make it known that you are familiar with what's required and don't intend to let the school give you the run-around.

We just decided to homeschool our kids, but it's now January, and the school year started in September.  Can we still pull our kids out?  Or do we need to wait until the end of the school year?  I read somewhere that the Letter of Intent is due by July 1st.  Is it too late now?

Normally, the Letter of Intent is due by July 1st before the upcoming school year.  However, the state regulations make provisions for those who decide to homeschool after the school year has already begun.  In that case, your LOI is due within 14 days of when you begin homeschooling in your district.  So, you can pull your child from school at any time during the year, and within 14 days from the day you pull them, your LOI is due.

We just moved to the area, and the school year has already begun.  Can we still homeschool?  Or do we need to enroll our kids in the public school until the next school year?

Just as the state regulations make provisions for those who decide to begin homeschooling after the start of the school year, so it is with those who move to a new school district after the start of the school year.  Your LOI will be due within 14 days of when you begin homeschooling in your new district.

Do I need to be a certified teacher in order to homeschool my child?  What qualifications do I need?

The only provision NY makes for a person to homeschool is that the person doing the teaching needs to be "qualified".  As the parent, there is nobody more qualified to teach your children than you are.  You know your child's educational needs better than anyone.  And if ever you found yourself thinking you are unable to teach your child something, then you know how to find a way to teach that thing to them, whether it be a tutor, or a video tutorial, or homeschool co-op class.  You have what it takes.  You know your child's needs.  Therefore, you are qualified.  Thankfully, the state of NY doesn't require anything more than that in order to teach your child at home.

*Nothing written in this blog post is intended to be construed as legal advice.  This is simply the author's understanding of the New York State home education regulations through 6 years of homeschooling her own children in the state.

I'm Disgusted by Those Who Support Trump, but I'm Still Voting for Him.

Oh, really?

At what point did degradation, sexual assault, and rape become better than indirectly causing someone’s death?  That’s the argument – that Donald Trump has said some horrible things, and is accused of doing some horrible things, but at least he didn’t indirectly cause the death of anyone, like Hillary did (i.e., Bengazi).  At least he didn’t delete his emails to cover up the fact that he may have divulged national secrets to the wrong people. 

Imagine someone saying, I robbed a bank, but at least….I abused my children, but at least….I cheated an elderly couple out of their life savings, but at least….I raped a woman, but at least….

 NO!  There is no “but at least” in any of these situations.

 Trump says, “It’s locker room banter.”

 Scott Baio, actor and Trump toady, said “And ladies out there, this is what guys talk about when you’re not around,” he added. “So if you are offended by it, grow up. And by the way this is what you guys talk about over white wine when you have your brunches. This is the way the world works, take it easy. ”

 Folks all over the internet are posting memes that read, “I’m more concerned about what Hillary has done than I am about what Trump has said.” 

[Listen, ladies.  If your men are talking like this, then you need to find yourselves new men, because I promise you, not all men talk like this, and the ones who do are disgusting pigs.  Chances are very good that your men do not treat you the way they should.  Chances are very good that your men will one day act upon the words they have spoken.  It’s not normal.  It’s not “the way the world works”.]

 So, what is it that Trump said?

 “I tried to fuck her.”

“I moved on her like a bitch, and she was married.”

“When you’re a star, they let you do it.  You can do anything you want.  Grab them by the pussy.”

 Now, replace the words ‘her’, ‘she’, and ‘them’ with the names of your mother/wife/sister/granddaughter/daughter/friend/self and say those statements again.  Better yet, have your husband/father/brother/son/grandson/friend read them back to you with those names in there.

 Still just “locker room banter”?  Still willing to say, “but at least…”?

 Yes?

 Okay, then how about this:

In a 1989 deposition, Trump’s then-wife Ivana, under oath, accused Donald of raping her.  She said he was angry at her, threw her onto the bed, pinned her arms back, tore her hair out of her scalp, and then forced sexual intercourse on her.

 In 1997, a woman named Jill Harth filed a suit against Trump claiming that Trump made unwanted sexual advances, groped her without her consent, and even attempted to rape her at a time when she and her romantic partner George Houraney were working out a deal to throw an event at one of Trump’s Atlantic City casinos.  Harth said he forced her into a bedroom belonging to his daughter, Ivanka, forcibly kissed, fondled, and restrained her from leaving, against her will and despite her protests. 

 In another incident, Harth stated, “He pushed me up against the wall, and had his hands all over me and tried to get up my dress again.”

 In April of 2016, a woman known only as Jane Joe filed a lawsuit against Trump in which she alleges that when she was 13 years old, Trump raped her. 

 Jane Doe says that as a thirteen year old, she was enticed to attend parties at the home of Jeffrey Epstein with the promise of money modeling jobs. Mr. Epstein is a notorious  “billionaire pedophile” who is now a Level 3 registered sex offender - the most dangerous kind, “a threat to public safety” — after being convicted of misconduct with another underage girl.

 Jane Doe says that Mr. Trump “initiated sexual contact” with her on four occasions in 1994. Since she was thirteen at the time, consent is not an issue. If Mr. Trump had any type sexual contact with her in 1994, it was a crime.

 On the fourth incident, she says Mr. Trump tied her to a bed and forcibly raped her, in a “savage sexual attack,” while she pleaded with him to stop. She says Mr. Trump violently struck her in the face. She says that afterward, if she ever revealed what he had done, Mr. Trump threatened that she and her family would be “physically harmed if not killed.”

 This case has a witness, referred to as “Tiffany Doe”, Trump’s party planner at the time, whose job it was to get attractive adolescent women to attend these parties.

But, it’s just locker room banter.  Right?

 At least he didn’t neglect his duties, leading to the deaths of innocent people.

 We should be more worried about what Hillary has done than by what Trump has said.  Right?

 Oh.  Wait….

 Do you honestly believe that violent rape of women is somehow better than indirectly causing the deaths of people?  Somehow, rape is better than death.  Somehow.

 Every 2 minutes in America, a woman is raped.  Tell HER that rape is better than death.  Tell HER, “But at least you didn’t die.”  I doubt she’ll share your sentiment.  I’m fairly certain that, to her, what she endured was equivalent to death.  Her life is changed forever.  For all intents and purposes, her former self IS dead.

 You people who proudly display your Trump signs in your front yards.  You people who slap a Trump bumper sticker on your car.  You people who post memes on social media several times a day, touting your support for Trump.  You people who can be heard in conversation saying, “I used to despise Trump, but the more I hear him speak, the more I think he’s a good guy.”

 Wake up!

 How can you openly and brazenly support this man who not only degrades women every time he opens his mouth, but speaks explicitly about sexually assaulting women and refers to it as “locker room banter”, and who is also accused of, and most likely guilty of, raping women and underage girls?

 How can you be proud to support this man?

 How can you want other people to know that you support this man?

 Because, at least he didn’t……

  Here’s the long and the short of it:  Clinton and Trump are equally horrible.  Neither of them is better than the other.  There is not one of them about whom it can be said, “But at least they didn’t….”  Clinton is responsible for many, many senseless deaths.  Trump is responsible for raping women and abusing young girls.  Neither of those things is better than the other.  Anyone who openly supports either of these candidates should be ashamed.

 You will find in my yard no signs.  You will find on my car no bumper stickers.  You will find on my social media no supportive memes.  And you will never, ever hear me say that either of them is a good person.

 But, I will be voting for Trump come November. 

[Please note that voting for a person and openly supporting that person are two entirely different things.]

 My reason is simple: Aside from Cabinet secretaries and Supreme Court justices, whose nominations require the approval of the Senate, the President of the United States currently has the authority to unilaterally appoint over 300 people to high-level positions within the federal government.  With the introduction of a Republican president, we can be assured that these positions would be filled by Republicans, and, for me, that is important.  Also, the protection of the right to life and the 2^nd amendment, which Trump supports, and which will be affected greatly by either a right- or left-leaning government.

 I won’t be voting for Trump because he’s a good person.  He’s not.I won’t be voting for Trump because he’s better than Hillary.  He’s not.

 I will be voting for Trump, but you won’t see me supporting him, and, if you openly support him, you should seriously reconsider.  It’s not something to be proud of.  It’s not something to seek “likes” for on social media.  And it surely isn’t going to convince anyone who wasn’t already convinced to vote for Trump.

 Trump is exactly what Hillary called his supporters – deplorable.  

Individualized Home Instruction Plan Revisited: simplifying the process

A little over 3 years ago I posted my original explanation of the Individualized Home Instruction Plan (IHIP) for New York State.  It details what is required by the state and also provides an example of my own IHIP form, which I used for about 4 years.

Over time, though, as I became more comfortable with the process and more familiar with the requirements, I trimmed the fat, so to speak, on my IHIP form.  Rather than writing a detailed description of what we planned to cover in every single subject, I deep-sixed the descriptions and simply listed the name of each subject, followed by the primary resource we planned to use to teach each of them.

This simplification saves a lot of time and makes it easy to use the same form year after year by just deleted the previous year's primary resources and replacing them with the new resources.

You can choose to do your IHIP either way, long or short, whichever suits your style best.  Really all you need to include is your child's name, age, grade level, a list of the main resources you plan to use in each subject (a list of required subjects can also be found in the regulations), the dates you'll be submitting your quarterly reports, and the names of who will be teaching your child (i.e., you).  

My school district sends us a form to fill out for the dates on which we'll submit our quarterly reports.  I just use their form, because it's straightforward, and doesn't infringe on any of our home schooling rights (something that is important to me).  You can choose any 4 dates you desire, but I find it simpler to use the dates suggested by the State (November 15th, January 30th, April 15th, and June 30th).

They also send a form for the entire contents of the IHIP, but, if your school does the same, you are NOT obligated to use it.

Here is what my IHIP looks like now:

INTRODUCTION:

We are creating an integrated, interest-based curriculum using a hands-on approach to learning. As such, materials and activities listed in one subject area may also apply to other subject areas. In addition, we believe that one of the great strengths of homeschooling is the flexibility to individualize the child’s learning experience so that skills and knowledge are learned at the time the child is most ready and motivated. In keeping with that belief, the materials we will use may include, but not be limited to, the following list as well as the resources listed under each subject heading below: reference materials (including atlases, dictionaries, maps, encyclopedias, non-fiction books, videos, DVDs, CDs, magazines, newspapers, and internet resources), classic and contemporary literature, workbooks, worksheets, journal/narrative/poetry writing, creative thinking, fact gathering, music, hands-on activities, experiments, projects, field trips, group activities, art supplies, free play, conversations, Christian Service Brigade (similar to Boy Scouts), and real life. We provide a rich and varied educational environment at home for Joe and also take advantage of the many library, community, and internet resources available.

ARITHMETIC: Primary Resources: Pre-Algebra by BJU Press.

ENGLISH (including Library Skills): Primary Resources: Wordly Wise 3000 by Kenneth Hodkinson and Sandra Adams; Research in Increments by Susan Kemmerer; Editor in Chief by The Critical Thinking Co.; The Great Library Scavenger Hunt.

HISTORY AND GEOGRAPHY: Primary Resources: From Adam to Us by Notgrass.

SCIENCE: Primary Resources: Exploring Creation with Physical Science by Apologia.

HEALTH EDUCATION: Primary Resources: Health in Christian Perspective by Abeka.

MUSIC: Primary Resource: Piano lessons, including lessons in music history and theory.

ART: Primary Resources: Artistic Pursuits for Junior High by Brenda Ellis.

PHYSICAL EDUCATION: Primary Resource: Daily outdoor play, seasonal activities (swimming, biking, hiking, snow sports), fitness education.

PRACTICAL ARTS: Typing, Life Skills. Primary Resource: Typing.com online typing tutor, DIY.org, as well as real life.

Primary instruction to Joe will be provided by his parents. Supplemental instruction will be provided by others, as necessary.

And that's it!  Short, to the point, and meets all New York State's requirements.

If you have any questions, please feel free to leave them in the comments.


 

Homeschool Curriculum Sale!

What better way to kick off the summer of 2016 than with a huge homeschool curriculum sale?  

No way.  No better way whatsoever.  Okay, maybe a chicken BBQ and some watermelon and some Popsicles followed by a swim in the pool would be a better way, but those things won't help you prepare for the coming school year.

This is the time of year I typically begin planning for our next school year.  The sooner the better, I think, for finding great deals and steals on curriculum, and I want to keep my costs down as much as possible.  Can you relate?

Knowing I'm not alone, last year I started what I hope to be an annual tradition of compiling all my unneeded or unwanted curricula into one place and offering it at hugely reduced prices for others who may be looking to spend very little but still want quality items.  As a result of the success of that sale, I decided to continue it again this year.

So, without further ado, I give you the second annual.....

ONLINE HOME SCHOOL CURRICULUM SALE!

Clicking the link above will take you to the event on my blog's Facebook page (p.s., feel free to 'like' my page while you're there).  All instructions for purchasing curricula are written on that page.  If you have any questions, please feel free to message me on Facebook or comment here, and I'll gladly help you out.  I'm pricing all items well below retail, so you're getting an awesome deal!  And you don't even need to leave the comfort of your living room.

If you prefer, you can also visit my eBay store and shop there.  All the items that are available on my Facebook page are also available in my eBay store, but my store has a few other items exclusive to eBay.

Before you leave (I know you're aching to get to the sale!), if you're in need of a planner for your new school year after you decide on your curricula, I have one of those for you , too!  Printable, customizable, and affordable.  Only $5 for unlimited access to the files on Google Drive.  Visit my AFFORDABLE HOME SCHOOL PLANNER blog post for more information.