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It’s no secret that this is not a household that supports or will support Autism Speaks, monetarily nor in action.  I won’t get into why here but will save that for another post.  One of the “things” that belongs to Autism Speaks is Lighting It Up Blue.  Before I knew or checked out that it originated with Autism Speaks, we happily did it and encouraged it.  I even turned my Facebook images blue for not just a day but all of April.

I was bound and determined that I wouldn’t wear blue in order to Light It Up Blue today, which is of course World Autism Awareness and Acceptance Day.  Swore up and down it wasn’t going to happen.  I’ve been discussing it and explaining why on my Facebook.

Then last night happened.  My youngest daughter said,

“MOM! MOM! I heard you say tomorrow is World Autism Day! The school is doing this thing!”

Then my middle daughter, my sweet autist, immediately followed up by gushing with,

“Mommy you have to wear blue tomorrow! Everyone is wearing blue for ME!”

“Yes they are, honey.  Yes, they are.”

The two of them together were quite a pair, talking about how the school made announcements and the teachers were talking to their classrooms about Autism Spectrum Disorders and what a special day April 2nd is, and how special all of April is for people touched by Autism Disorders and autistic individuals.  As a WHOLE! SCHOOL! they were going to SHOW! SUPPORT! with the WHOLE! REST! OF! THE! WORLD! and it’s just really the biggest spirit day ever for my daughters.  After all, my daughter believes that this whole worldwide day and month is set aside just for her… and the school dressed all in blue today just for her.

When she asked me to wear blue to show my support for her special autism, how could I say no? How could I bum them out with the rhetoric of “why we don’t support Autism Speaks and their stuff?”  How could I say no when my girl thinks that blue was chosen specially because it’s her favorite color?

It’s simple.  I didn’t.  I wore blue after all.


Source: https://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&docid=NuIqSZjxBauA8M&tbnid=S6HgtM3YkTX2-M:&ved=0CAQQjhw&url=http%3A%2F%2Fhittingthewall.paulglover.net%2F20130509-fibromyalgia-awarness-day-2013-show-someone-in-pain-you-love-them%2F&ei=QSgwU-n5OcK0yAGF8oGwCA&bvm=bv.62922401,d.b2I&psig=AFQjCNEOFLYng877JZKQ1bt8jREYuBaWug&ust=1395751334502767

Fibromyalgia Awareness: Pain Flare Up

I’ve been working my way through what feels like an endless flare and as each day goes by, it seems harder and harder to get through.  Of course I still get up each day and as each individual day goes by, the day is harder to get through.  It’s par for the course, really, but this has been a really long flare that’s been going on for well over a month.  I’ve had mini-flares within the flare.  Weekends let me know just how badly I’m really taking care of myself during the week by slamming me with the CFS.  I wish I could give in to it, but 3/4 of the time I really can’t.  When I do, it’s sweet heaven and drifting into sleep, pained as it is, gives me the only relief I can get sometimes.  I’m still on a half dose of my Fibro med and have about seven days left on it before I can titrate up.

But now? During this past week specifically? The CFS is starting to kick in during the week.  I’m having worse trouble in the mornings not just getting up out of bed (that’s always a given) but waking and shaking off the grogginess.  I’m afraid it won’t be long before I can’t hear the blaring alarm that’s next to my head nor feel the vibrating phone alarm under my pillow.  I’m feeling the CFS at work now.  I’ve been successful in shaking it off at work, but I’m worrying about reaching a point where I can’t shake it off so that I might not be able to drive home. I already keep my cane close by and use it frequently.  During my flares I use it nearly constantly.  My balance is much worse; I can fall over out of nowhere for no reason; my sciatica gives me bursts of searing pain and completely goes out on me; I get other back pain and myofascial pain and other random pain that requires the support of the cane so that it helps ease things.

I was out at the store a week or so ago to run an errand and a lady came up to me to tell me that she used to use the same cane.  It’s purple with colorful flowers all over it.  I thought she was coming over to be nice.  Then she said,

“I was at a therapy session one day and my physical therapist saw my cane and asked me why I used it.  I told him why and his response to me was to throw it away and just stop using it.  And do you know he was right? It was the best thing I ever did.  You should do the same thing! It will be the best thing you ever do! You’re too young to use a cane!”

The smile that I’d had on my face must have faded instantly and I must have had daggers suddenly shooting out of my eyes, because the smile she had been showering me with faltered.

“That’s so nice for you.  I don’t suppose you have Fibromyalgia like I do.  I wish I could just throw away my cane.  I’ve done physical therapy but it not only didn’t work, it made my chronic pain disorder worse.  The cane helps me relieve some of the pain, but without the cane I wouldn’t be able to rely on my balance and I would fall more often.” 

Then I saw a light bulb.  I had been afraid I would see a slack jaw.

“Ah, I have a friend that has Fibromyalgia.  My mom, God bless her, had it too.  I understand.  Bless you.”

Then her smile returned and I felt at ease again enough to return her smile.  As I continued shopping I started to feel a different kind of unease and my frustration returned because I kept turning that incident over and over in my mind.  As I’ve gone over the past week (or more) I’ve continued to think about it.  I’ve been trying to figure out why it continues to nag at me.  It’s more than the immediately apparent unsolicited advice.  It’s more than the rampant incorrect assumptions being dumped all over me in that exchange that lasted all of 3-5 minutes.  It’s more than how quickly a seemingly positive random interaction soured.

Then throughout the past week or so, I found that I was paying more attention to how people respond when they realize I’m using a cane or I’m in visible pain.  When they can “see” my invisible disability by proof of the cane they’re very polite and smile and will give way.  People sometimes will offer to give me their place in line if they see I have fewer items in my cart/basket.  People are even more compassionate if I have my girls with me and they’re on their best behavior with me.  If I’m feeling tired and I’m sure it’s on my face, again, people are even more compassionate.  If I’m moving slowly, carefully, and purposefully, people are kinder and gentle.

But only if I’m smiling.  Only if I don’t let the pain visibly show too much in my face and posture.  Only if I can manage to control vocalizing unexpected bursts of severe pain that take my breath away.  Because if I’m not smiling… if I look like I’m ready to cry… if people can see just how much pain I’m in and maybe even hear it then the discomfort is palpable.

As it turns out, my pain and discomfort and feelings of sickness due to the pain aren’t really about me.  Of course not, why would my disability be about me? The things I go through are about everyone else.  I’ve always known this on some level, but I didn’t realize until recently just how much.

I can’t just deal with my pain and try to get through it.  I have to help others through my pain as I’m trying to cope with it myself.  I have to reassure them and explain it to them.  Until I thought about it, and thought about specific recent incidents in a new way, I didn’t realize just how much effort it takes to put up the appearance that my pain isn’t nearly as bad as it is even when it’s so bad that I can’t hide it and it breaks through and takes my breath away and I shriek.   I realized that I could not only see the discomfort others feel over my pain but that I was actively pushing against it trying to care-take others’ feelings and worries about my obvious pain… even strangers.

I reassure people that I am, in fact, all right (fine, even) and “this is normal for me.”  Because somehow, if “it’s normal for me” then I must be used to it and I must have a high pain tolerance.  I do have a high pain tolerance, but come on.  Pain is pain.  Severe pain is severe pain.

People will ask with fear, “Are you all right?” and I can tell that they’re hoping I’m going to minimize the situation, brush it off for them.  It’s rare that I tell the truth about how bad it is.  It’s par for the course.  It’s my normal, yes, and I have to get used it.  I have to endure it. Even when my baseline pain increases, I just have to get used to it.

I have to say I’m fine because it’s expected.  No one wants to hear the details of pain or what Fibromyalgia is like or what it means for my life and my family.  No one wants to know what struggle it is for you to even be standing up right in that moment.  You suddenly feel like you’re that elderly relative that’s asked how they’re doing and they give you the laundry list of every single ache, pain, illness, bowel movement, skin tag removal, kidney stone, colonoscopy, and family gossip because you see That Look come over the other person that lets you know they just don’t want to hear it.

Except I’m not really all right. I just can’t let anyone know how “not all right” I am because pain like this? Nonstop, constant, chronic pain that has severe flare ups? It’s taboo.  I’m not really supposed to say, “No, I’m not all right.”  If I say that then that implies, apparently, that I have expectations of other people to actually physically or verbally or emotionally help me and I shouldn’t impose that on people when it’s not their business and they don’t know what to do.

Maybe that’s what’s most uncomfortable for other people.  It’s uncomfortable because they don’t know how to make it better (they don’t have to make it better), they don’t know what to say or do, they don’t know what’s appropriate because there’s no rule book.  If someone else’s pain can’t be easily soothed because it’s more than surface pain (or what I call Less-Than-Labor-Pain Pain or for men to relate, Less-Than-Kidney-Stones-Stuck-In-Your-Urethra-Pain Pain that never, ever stops) this “look” comes over someone’s face.  This look that says my pain is not only uncomfortable emotionally for them but it’s an inconvenience.  I’ve put them into a position where they have no choice but to think about and deal with something that they haven’t ever had to think about before.  I’ve put them into a position where they can’t actually help.  I’ve put them into a position where they have to witness someone else’s pain and discomfort and yes, agony, and they don’t know the right thing to do.

 

What’s right is:

  • Please, try not to make someone else’s disability be about you
  • Please remember that those of us who have chronic pain are not lazy or making it up
  • Please don’t judge us as drug seekers… we are trying to relieve pain that causes many people to commit suicide; and if we are on pain relieving medications, don’t assume that we’re addicts.  If the medications work in some manner then they’re doing their job
  • Please remember that we are not intentionally inconveniencing you no matter how frustrated and annoyed you may feel over our pain
  • Please understand that we are not choosing this and if we had the choice we would make it stop forever and ever, Amen
  • Please know that without a doubt, we have tried every natural non-narcotic remedy that we can think of because we are desperately afraid of the mere whiff of appearing to be a drug seeking narcotics addict even if the pain relief medication/s we take are not narcotics nor addictive
  • Please remember that as uncomfortable as you are about someone else’s chronic severe pain, that other person is far more uncomfortable than you are 24/7
  • Please treat people with respect… not just people that have disabilities, but all people and that way when you see someone that has a disability you don’t have to wonder how you’re supposed to treat them
  • Please don’t apologize
  • Please don’t assume that you’re required to help unless we ask you, but we always appreciate heartfelt offers of help
  • Please be compassionate

 

Do I sound bitter? My apologies.  This flare up over the past nearly-two full months is having an effect on me that’s not pretty.  I’ve had ever-increasingly worse CFS due to the pain.  I think I said that already.  Fibro Fog is sort of chucking me on the chin here.  It’s easy to tire because the pain comes on so badly that all my body wants to do is attempt to sleep in order to escape.  Soon I’ll be allowed to titrate up from the lowest dose of the medication I’m on, which should help, so I pray that my insurance won’t take the stance that I’m a drug-seeking addict even though my prescription isn’t for a narcotic.  You know, because they’re idiots.

After all, I have laundry to do.


Photo from GabeZimmer.com

Tongue Tied

My eldest is watching some show about a boy band, and there was a song with a catchy tune.  Gracie was half-listening while watching her little sister play a video game.  All of a sudden she comes into the living room paying more attention to the song with a horrified look on her face.

“It would not be good to be tongue tied!”

“What are you talking about, honey?”

“Having your tongue tied would hurt! It would be BAD!”

I realized that she had a mental image of someone’s tongue being tied in knots or something similar.  Maybe it was tied like a bow on a shoe.  Still, I had trouble hiding the slight smile on my face because she had misinterpreted the phrase but mainly because I was imagining what I knew she was imagining.  Then suddenly we were both giggling.  After a few minutes she was puttering in the kitchen making a snack and I could hear her giggling.

When she came back into the living room I explained what being tongue tied meant according to the song.

“So honey, when someone says they’re ‘tongue tied’ it’s a saying.”

“Oh no.”

“Yes.  It means that they’re having trouble saying what they really want to say.  Like in the song the boy wanted to tell the girl that he really likes her a lot and maybe loves her but she makes him nervous so when the words come out of this mouth they come out jumbled and garbled.  Tongue tied.”

::eye roll::

When I showed her the photo I’m using for this entry she smirked.


Originally blogged on the blog:

love explosions

when the love for your child overwhelms you

Tone it down. Please click those words, the ones that say Tone it down.  I really can’t add anything useful to that blog post because it was stated all so perfectly.  Read about why a person’s tone of voice doesn’t make their side of the argument invalid.


Image From Rainy Day Gal

Girl Scout Samoas Cookies

We got back from Gracie’s Girl Scout meeting a little while ago. We have the meetings in one of the historical houses in the historical district, and the girls have their meetings in one room while waiting moms like me usually wait in the kitchen and listen at the doors or play on our cell phones or help with the meeting when asked (well actually, I’m there on hand in case The Girl needs me for some reason although she’s at a point recently where she would probably do better if I weren’t there).

It was a difficult meeting for her today because her SPD was in high gear. At first she came to me begging to leave, telling me,

“It is Too Loud. I need to leave now.”

I was proud of her for the fact that she self-advocated and told me very clearly what she wanted and why.  That said, I asked her to try to find a way to make it through the meeting in case Miss Girl Scout Leader had something fun planned.

She took some “emergency gum” from my purse and chose to sit at the kitchen table, listening to the meeting that took place in the next room.  When it came time to participate she would go in briefly but she still couldn’t handle the noise for long.  At times it got so loud that she would close the kitchen door leading to the meeting room to almost-shut.  When that happened,

“They are too loud.  I need to close the door so that I do not hear them.”

Again, she self-advocated for herself in action and explained her actions.  She was polite about it, but firm.  She didn’t announce it to anyone except to me.

She got to do her crafts at the kitchen table and was so happy about that.  Thank you, Miss Troop Leader, that made her day.  The girls made little cookie trays with tiny felt cookies that were turned into a pin.  The felt cookies were supposed to be chocolate chip, but since Gracie’s favorite cookie is the Samoa she turned hers into a tiny batch of Samoas.  She’s the only that did.  There was another cookie pin that was supposed to be a cute Thin Mint with a bite out of it and a phrase on it that said, “Hey who took a bite out of my Thin Mint cookie?!?” She was appalled at the thought of anyone taking a bite out of her Thin Mint and then pinning it to herself or her vest, so we didn’t cut out a bite of cookie.  Instead we pinned the little tag with a Samoa sticker on one side and her cookie sale goal on the other (100 minimum).

She kept pretending during all of this that the tiny cookie tray she made was burning hot just-from-the-oven, giggling as she did so.  On the way home, Gracie couldn’t speak but she processed the meeting.  Every now and then she giggled while holding the “hot hot hot tray.”

By the time we got home the slight rainy drizzle had turned to pellets of … frozen something … but she liked the sound so we sat in the parked car for a few minutes to listen to the quiet sound of the almost-snow pelting the car.  She sighed, gathered herself, and when I asked her if she was happy that I had “made” her stay at the meeting instead of leaving when she asked, she didn’t respond …

… but she didn’t say “no.”


 

Gracie had a great night last night.  She was really internally motivated to do not only her reading homework, but the follow up writing.  Then she did some math on the Kindle Fire HD apps for an HOUR and mixed it up with the levels of difficulty and then she did the response.  She went between two different grade level apps (I’ll have to dig up the names of the apps to share them later).  Of course she started with the hard levels, then moved down and asked permission for each lower level but seriously? They’re all hard.  She was able to do many of the problems on each level.  She did a lot of the reading apps too and spent a lot of time putting words in alphabetical order and laughed at a lot of the words.  We talked about the words in the lists and she would tell me what they meant, and asked what the others meant.

 

 

 

She wanted to do it on the Kindle rather than try what was sent home to me first, and since she was so willing to do it for so long I was just so happy she was doing MATH! that I didn’t argue with her.  I want her to see math as fun and if this is how it progresses, then I want her to choose what works.  I’m just so happy right now that I’m tearing up.  I mean… Gracie willingly did math for an hour and ASKED TO DO IT and I had to stop her because she went past her bedtime.

 

 

 

If I ever questioned going back to work, just being able to afford buying that tablet made it completely worth it so that my girl could play with math and have fun.  With math.  MATH.  This is really huge for us.   This girl does everything possible to avoid math unless she’s counting out money at the store for a My Annoying Little Pony.  Or she’s counting her cookie.

 

 

 

Of course now she’s asking for an iPad of her very own.

 

 

 


English: The location of the nine paired tende...

English: The location of the nine paired tender points that comprise the 1990 American College of Rheumatology criteria for fibromyalgia. (Photo credit: Wikipedia)

I had my first rheumatology appointment.  It was the intake, so it lasted about two hours.  I went in prepared with a printout of every symptom that I have frequently and my history over the years that may have contributed or could have been early signs of Fibromyalgia (or something else).  I went in with an open mind that I was wrong about the Fibromyalgia thing.  Even so, I started to feel panicky when she started to make comments that she didn’t seem to think that’s what I have because it took me so damned long to even get into a rheumatologist and if it’s not what I think it is then who’s going to treat me?

Then she tested the trigger points.  With everything I know about Fibromyalgia (including the damn trigger points) I didn’t even realize that’s what she was about to test.  I thought she was going to test my spine for MS first since we had just finished talking about.  Suddenly I felt like I was exploding from the inside, and everything was about to fall off of me.  I nearly jumped out of my skin and wished I could leave my body.  I admit it… I cried.  I couldn’t catch my breath from the pain.  I’m in tears right now recounting this to you.  It’s a little more than 12 hours later and the trigger points still hurt.  The doctor seemed surprised that when she just (apparently) gently pressed my trigger points I had such a strong reaction.  It was a similar automatic reaction as when you have your reflexes tested with that little rubber hammer when they hit your reflex point at your knee.  Except for the fact that it’s a combination of pain, intense shakiness from within and without, breathtaking, shocking to the entire system with each trigger point, a bruised feeling in a center point that radiates outward to everywhere, the most intense centralized nerve-like pain… I could go on but I honestly am not sure I can adequately describe what it’s like to someone who wouldn’t feel anything at all when their trigger points are pressed.  The intensity is just… there’s an emotional response to go with the physical.  It’s incredibly scary even once you realize what’s going on.  I’ve had it done once before to diagnose the Fibromyalgia and I knew nothing at all about the disease back then, knew nothing about trigger points or what the doctor was doing or why.  I only knew it left me limp and crying.

I was still limp and crying yesterday but at least this time I knew why.  I pray to God and all the Saints that my daughters never, ever have to go through this if only so that they never, ever have to have their trigger points tested even once.  Sorry, I got a little off track.  So the doctor was a little surprised because I think she had decided that I had something else.  She said,

“Oh! It appears you have ‘some Fibromyalgia!’ Do you know what that is? What that entails? You said there are family members with it but are you educated at all about it?”

LOL LOL LOL again.

She asked me this while I was still crying, and in the physical and emotional mess I was already in I just cried harder.  I couldn’t even nod my head.  She put her arm around me and had me lay back on the exam recliner (not a table because let’s face it, people with connective tissue disorders have a hard time laying down all the way on exam tables).  She gave me some time to catch my breath and calm down.

And then she proceeds to tell me what she thinks she knows about Fibromyalgia and how we’ll go about treatment.  Which is that she can diagnose it, but she doesn’t prescribe medications for it.  She can prescribe therapies and she did… hydro-therapy, so yay for that… and she can recommend to either my neurologist or psychiatrist medications that she thinks would help because,

“It’s a neurological disorder brought on by lack of sleep.”

O’rly? is what I think my exact response was.  Of course it must have been paired with an incredulous facial expression because she repeated what she said with a little bit of defensiveness in her voice and expanded a little bit like she was talking to a child.  Given all I know about Fibromyalgia, that was NOT what I was expecting to hear from a top-rated Rheumatologist.  It felt like the appointment came to a screeching halt.  I was so shocked that I had trouble forming a sentence to tell her what I knew.  I see in a month or so, which means I’ll be printing out a metric shit-ton of articles that I’ve shared here proving it’s not just neurological and not “brought on by lack of sleep” but that there’s actually an issue with the nerves.  That it’s biologically based.  That it can’t be remedied with sleep.  I’ve tried.  Chronic Fatigue Syndrome is part of the disorder.  It doesn’t mean I’m not getting enough sleep.  It means that no matter how much sleep I get my body doesn’t recognize it as “enough.”  There will never be enough recuperative sleep or rather… I will always go through phases where my body doesn’t recognize that I’m actually getting enough sleep.

But then this is part of why I’ve blogged about the fact that I don’t think a Rheumatologist is THE Doctor to treat Fibromyalgia.  We need a Fibromyalgist.  Not treatment between several different doctors… a doctor who specializes mainly/only in Fibromyalgia and related/similar disorders.  It’s my own fault for going into this with really high expectations and hopes.  Fibromyalgia may be one of the disorders that this office can diagnose and treat, and call it one of their specialties, but it just means that they’re qualified to diagnose it.  Anyway, there’s more.

She said that we do still need to figure out if there are any additional diagnoses on top of the Fibromyalgia, and she strongly suspects that there may be.  I have to get an X-Ray for something I forgot why because I haven’t had enough coffee this morning.  I have to get some comprehensive blood tests for vitamin levels and various diseases and disorders.  She’s very bothered by the fact that with all of the easily-broken bones and sprains I’ve had since childhood, not one single person or doctor thought to run tests or figure out WHY these things were happening.  She’s very bothered by the fact that no one ever picked up on all of the various infections and illnesses I’ve had being abnormal and WHY didn’t they encourage me to figure out why they were happening and insist on running tests.  I told her that I’ve actually asked the same questions, I’ve asked my doctors and even begged to the point of ordering my doctors to run certain tests that I hoped would give answers.  She’s bothered that not one single doctor except my now defunct gastroenterologist took some initiative in helping me figure things out and pointing me in the right direction.

This doctor is going to help figure out what diagnoses I may have in addition to Fibromyalgia and/or rule out everything else.  And she said that that’s basically all she can do.  She’s a diagnostician.

So I’m really left with a neurologist who doesn’t feel comfortable prescribing Fibro-related meds because it’s “not her specialty” and a reticent-to-believe-in-Fibro-as-biologically-based psychiatrist to take her recommendations and/or be willing to try various Fibro meds until we hit one that works.

Mixed bag right there.  I’m still a bit of a wreck physically and emotionally, so I’m not really sure how I’m going to feel about the appointment itself for a while.  I do know I was excited as soon as she prescribed the hydro-therapy with a real, um, what’s the word? Not just therapist… damn.  Word recall.  Help.  Eep, it’s past time to get ready for work, but I’ll be thinking on this and probably add a new post for anything I haven’t thought of right now.  Coffee may help with that process.  :-)

But blessed Baby Jesus… I pray that no one ever, ever, ever tests my trigger points ever, ever, ever again.  That sucked donkey balls more than I can ever express.

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