I may have fibro, but fibro doesn’t have me

It’s been a rough pain day.

Well, last couple of days, really. I generally live around a level of 3-4, but every once in a while something hurts that doesn’t normally bother me. For a couple weeks now, my lateral deltoid muscles (i.e. top middle small muscle of the outer shoulder/top of the arm… the green one in the pictures here), particularly the right side, have been giving me grief. But, it’s not intolerable, so, besides mentioning it to the chiropractor (who listed which of the exercises on the LOOOOONG list he gave me that *should* help), I haven’t worried about it.

But then I fell. Twice.

Friday night, I tripped over Miss Lily (our Valley Bulldog). If you’ve never met my furry children, let me just say that they think they are people. Lily was adopted as a puppy, and Max (the Pug) was a rescue from the Kentuckiana Pug Rescue (sort of… he was surrendered to a local foster home, which happens to be my sister, and he just never left). We believe Max had been abused; Lily was an only dog for 3 years. So they are both attention hounds (pun not intended, but amusingly apropos); Lily because she is jealous, and Max because even 3 years later, he still acts like he’s starved for affection. They are the sweetest, goofiest “therapy dogs” – they are an essential part of our little family, and I can’t imagine life without them.

Even still, sometimes they drive me nuts. Mostly when they get underfoot, which is of greater concern when the Munchkin isn’t home.

Back to Friday night… when I was reaching to turn off a floor lamp in the living room before bed, Lily got right behind me. Except I didn’t know that until I tried to step backward. Of course, I didn’t want to fall on her, so I kept contorting in a weird way both trying to catch myself and fall away from the dog. I landed in an ungraceful heap in the middle of the filing I currently have spread out in the living room to be sorted. Papers everywhere, dogs freaking out, and all my weight on my right shoulder and my right hip.

I’ve recently also been having trouble with piriformis pain. This is karmic retribution, I am absolutely certain, for all the times my sister and I teased our poor mother about her years-long struggle with piriformis syndrome (i.e. “Haha, so funny, Mom has a pain in the @rse!”…. suddenly so very UN-funny). Again, this is particularly right-sided.

Today, as we were taking the dogs to the dog park, I fell again. I’m not entirely sure what happened there… the bulldog was in front of me, there was another dog down the sidewalk, the pug went nuts (he’s  only aggressive when he’s on a leash… let him off, and he’s the biggest chicken in the park), there was a step… regardless, I went down again. On the right side, again. This time I did manage to cut up my palm, in addition to missing the dog and saving my glasses. Just a little scrape, but this time there were witnesses. Blegh.

I feel the need to state that I didn’t use to be this clumsy. I’ve never really been the one who ended up with the scraped knees. I danced for 12 years as a child, I did theater and musicals in junior high, high school, and community theater, I was in marching band in high school, I practice yoga and pilates on an intermittent basis, and (as a curvy girl) have always been pretty conscious of the way I carry myself. I am flexible, graceful, have an excellent sense of balance, and can turn cooking and cleaning into a sort-of dance. I do NOT fall.

So the fact that I’m suddenly FALLING [what feels like] all the time – which, in reality, is a handful of times over the last 4-6 months – is frankly pissing me off. And it scares me, because I don’t know if this is just something I have to live with, or if it will get better as I work to regain strength.

When we got home, I was feeling pretty bummed. The scale hadn’t been kind this morning, and now I’m becoming clumsy. I can see all my dreams for learning to ballroom dance and climbing Machu Picchu and seeing Angkor Wat and ice skating in Rockefeller Center and wandering around Mont St. Michel and Santorini and Giant’s Causeway and Cinque Terre and le Pont Neuf… well, you get the idea.

Anyway, my stream of consciousness went from falling to climbing to vacation, and I remembered I needed to look for hiking clothes online for our upcoming trip to Colorado, which brought out the tape measure, which reminded me I hadn’t recorded any measurements for a while. I started recording them a while ago, first because I was in a diet/exercise accountability group, and then because I started on a new supplement for inflammation/swelling, and I wanted to track if it was working.

Which leads me (finally, I know) to my pleasant discovery: since December of 2013, I have lost a total of 25 inches overall.

What the WHA…?!?

Shocked me. I recently gained back a few of the 40 lbs I’d lost, and when you’re hurting and sore, everything feels BIGGER. I have been having wardrobe frustration lately, and also somehow have started getting hungry around 11pm (after being completely NOT hungry most of the day), so I really had no idea that I had come so far.

That inspiration fueled me for the afternoon. I cleared out another bag full of clothes from the closet. I ordered a new pair of hiking pants (on sale… hooray!) for the San Luis Valley next month (this is a big deal for me… because I’ve always struggled with active wear as a plus-size bottom, so I usually just wear jeans for everything besides work, regardless of the season). And then… hold on to your seats, ladies and gents… I texted my sister and asked her to come over and spend some time in my closet helping me put together some outfits (also an enormously big deal… my sister and I have completely opposite tastes, but she is skilled at layering and accessorizing, whereas I’ve spent the last few years acquiring a wardrobe full of mix-and-match simple basics that are thoughtless to wear, simply because it was easier and faster). A conversation with one of my coworkers the other day (who is always impeccably dressed with all the adorable layers and accessories, looking bold, classy, AND trendy), combined with warmer weather, the revelation of my actual progress, and the journey I am on right now of rediscovering myself and creating a new normal… all of these things coalesced into a desire to start putting effort into looking “put together” more often. And I should care. I may be a big girl, but I still have a good figure, I’m a professional, and dang it, I just like being girly.

I say all of that to say this: I have been feeling, intermittently, like the fibromyalgia was winning. I’ve been exhausted, and hurting more than usual. I’ve got some projects in the pipeline that I need help with that I previously would have been perfectly capable of doing alone, and that frustrates me. I’ve developed a sudden and unbecoming sensitivity to gravity. And just to add insult to injury, I finally broke down and applied for services through Student Disability Services. As much as I tried to avoid it, to get by on my own, something had to give… it was either going to be my grades or my stubborn, prideful independence.

But today, I was reminded: 30 lbs and 25 inches is nothing to sneeze at. I’m still up and moving. Some days I get tired, yes. Some days I’m sore and stiff. Some days need more stretching and sitting on a tennis ball. Some days require intervention from a licensed professional (i.e. the chiropractor and/or a massage therapist). But I CAN do most of the things I want, with a little modification. Yeah, I have to climb on the counter to open the kitchen window now. Yes, I had to request help from Student Services to allow for additional absences and adjusted homework deadlines. But I need to bear in mind that those are just tools. I’m using the tools available to me to keep going. I haven’t given up. Lord knows it would have been easier to give in. It would be easier to quit school than keep chugging along at a snail’s pace while working full-time and trying to raise a spectrum kiddo. It would be easier to take a brainless job and not aim for more. It would be easier to put the Munchkin on stronger medications or to decide that intense therapeutic intervention was “too much of a hassle” or too expensive. It would be easier to stay in an apartment and not be responsible for maintenance and repairs on this big house. It would be easier to give in to the pain and let my muscles go to waste, using it as an excuse to let the pounds creep back on.

But I refuse. I am still going to live my life. I deserve to look nice and feel good about what I’m wearing, rather than trying to dress down to minimize my obvious curves. I deserve the right to fight for my education, and to use whatever tools are available to me to get there, no matter how long it takes me. My son deserves someone to fight for what’s best for him, and not just settle for the easy way out. It would be a lot more fun to take all the money I spend on medication and doctor visits and supplements and therapy, and put it toward a nice vacation. I worked hard for years to get out of debt and be able to provide a home for my son: a sanctuary with a backyard and his own room and a swingset and room to run, just like we had as kids… a tangible source of stability and love that I can give him unlike anyone else. He deserves to be given the tools and resources now so that he can be successful and independent later. And me? I am only 33 – I am just getting started. I will not give in to the pain on the bad days. I will stretch when it hurts. I’ll pick myself up when I fall (literally). I’ll fight through the short nights and the paperwork and the student loans to finish the education that I so desperately WANT. And I will still go and see and do the things I want to. I will not let FMS/CFS win.

So yes… maybe I’m a bit slower than I used to be. Maybe I will still give in time to time to easy, mindless comfort of my jeans/t-shirt/cardigan uniform. And maybe y’all will have to push me up Machu Picchu on an alpaca. But I will NOT give in. I have fibromyalgia, but fibromyalgia does not have me.

Celebrating Different… World Autism Awareness Day 2015

I have a confession:

There was a time when I felt ashamed of the Munchkin’s ASD.

Now, before you call out the lynch mob, let me give you a little background…

The Munchkin wasn’t properly diagnosed until he was 7. Looking back, he had traits I should have recognized, but he didn’t have some of those more “classic” signs that might have set off a bell for me. He was social. He was cuddly. He didn’t have OCD tendencies like stacking things in patterns and lines. Even though I recognized the pigeon-toeing and the lack of eye contact and the verbal delay, it didn’t add up. His dad and I split up when he was 3, and then his dad was deployed to Iraq for a year. (If you know anything about military deployments, then you have some idea of how difficult a deployment is… not just the absence, but the reintegration upon return.) While we were still in the reintegration process, I survived a date rape and sexual assault; of course, I didn’t share this with my then-five-year-old… but I could sometimes swear that he’s empathic. I know he knew somehow that something was wrong. He may not be able to put a name to an emotion, but he certainly picks up on the subtle energies of the people around him.

So, how exactly does a 3- to 5-year-old child cope with stress? It was these very big things, coupled with Munchkin also having “hidden asthma” that took some creative investigative work to diagnose, that delayed us figuring out exactly what was going on in that little brain.

I remember the day Dr. K. told me for certain. It was surreal. I didn’t really absorb it right away. And even then I knew the Munchkin’s father wouldn’t accept it. How was I going to handle this? What would his peers think? Was he going to be labeled? *gasp!* Your child being “labeled” is supposed to be the worst thing that can ever happen, right?

So for the first couple years, I was discreet. I shared with his teachers, of course, and the principal. I’ve been lucky enough to be able to keep Munchkin at a small private school; this has allowed him much more personalized attention in these early years. It wasn’t until two years ago that I realized perhaps, in this case, discretion was NOT the better part of valor. Two things happened that began to change my mind.

The first was seeing a now-famous TED Talk by Dr. Temple Grandin. Though it was recorded in 2010, I was just getting into TED around a year after the Munchkin was diagnosed in 2012. I listened to this brilliant scientist say:

“We’ve got to think about all these different kinds of minds, and we’ve got to absolutely work with these kind of minds, because we absolutely are going to need these kind of people in the future.”

FUTURE.

This well-educated, well-spoken, highly regarded, brilliant, AUTISTIC scientist who had already left an indelible mark on the world was telling me my son had a future.

Of course, I knew that. But when we first heard “autism”, the future I had envisioned changed. I didn’t know what it would… COULD… look like. I was lost. But then, Temple Grandin reminded me that not only did my son have a future, but that his mind is NEEDED in this world.

That started turning the tide for me. I began to read, and research, and start re-framing the way I thought and spoke about our new narrative. But I was still being pretty discreet about it.

Until the day the Munchkin came home from school in tears.

Unlike a regular “rough day”, this time he said, “Mommy, [Little Girl in my Class] told me today that I wasn’t going to my school anymore.”

“Well, why did she say that?”

“Because her mommy told her that. Her mommy said that I get special treatment, and that nobody wants me there, and I don’t get to go back.”

…*cue awkward pause whilst I scooped my jaw off the floor*…

This is one of those moments that every parent dreads. You know, deep down inside, that one day you’re going to have to deal with one of those climactic “school situation” moments just like on tv, and you imagine yourself handling it like June Cleaver instead of Roseanne Barr, but something goes wrong and you all end up on Oprah.

Fortunately, I managed to be calm and non-confrontational. I spoke with the teacher (who was equally shocked). But it was then that I realized that, by not disclosing my son’s truth, by downplaying our situation, I had created another problem. And worse, I was sending the message that my child wasn’t good enough.

And there it was. The light-bulb.

Ever since the Munchkin was little, he’s been trying to please his daddy, and nothing is ever good enough. That’s a novella for another day… but suffice it to say, I suddenly realized I was failing at being his advocate. And it was time to step up.

My first step was a letter to all the other parents in our class. Then social media and my official “coming out” as a spectrum mom. And people were shocked.

What? How long? You can’t be serious…. But he talks. He goes to a “regular” school. Are you sure? Maybe you should get a second opinion…

Fast forward three years… and let me answer some questions from our journey thus far:

  • Yes, we’re sure. The Munchkin has high-functioning autism spectrum disorder (formerly known as PDD-NOS, or even mild Asperger’s). He’s not mean, aggressive, stupid, or being shown preferential treatment.
  • No, I’m not the one who diagnosed him, and No, I don’t need another opinion. I am very comfortable with the opinions of his team of 3 MDs, PsyD, 3 BCBAs, ST, OT, LCSW, and 6 (count ’em, SIX) ABA therapists who all have come to the same conclusion: Munchkin is on the spectrum. He also has asthma, ADHD, and generalized anxiety disorder.
  • NO, I do not for one fraction of a second believe that his autism was caused by vaccines. That theory has been debunked, and the quack who wrote it disbarred. Further, even if vaccines DID cause autism (which they DON’T), I would much rather my child be autistic and alive, than die from some common preventable disease. Autism is not a death sentence. Communicable diseases can be. (And don’t even get me stated on herd immunity.)
  • Yes, the Munchkin is on several medications. No, not a single one of them is “for” autism. He is treated for asthma, allergies, and ADHD, and we manage everything else with behavioral intervention (plus coffee, patience, and lots of trial-and-error).
  • No, I am not “loud and proud” about my son’s ASD because I’m showboating, fishing for sympathy, grasping for the spotlight, or suffering from Munchausen’s by-proxy (and yes, I have been accused of ALL of those things). I am outspoken because I am not ashamed of my child. He is beautiful, smart, funny, curious, and has a heart the size of the Yukon, and I love everything about him. I do not want him to ever – even for a moment – believe that I don’t love and accept him for who he is.
    Do we work on social skills and behaviors? 
    Yes.
    Do I encourage him to try new things, try to manage his sensory responses, and hold him accountable for his actions?
    Damn right, I do.
    But I also forgive. I listen. I try to put myself in his shoes. I learn. What works for other kids doesn’t work for THIS kid, because he is different. NOT LESS. Just different.

A funny thing happens when you start being vocal about something that is stigmatized. Eventually, someone is going to slowly, maybe even in a whisper, raise their hand and say, “Me too.” This is the kind of discourse that my rhetoric professor would tell you has the power to change the world, because lack of discourse is what creates that stigma in the first place. Two of the most humbling experiences of my parenting ‘career’ have been the moments when two other moms of small children told me that our story – that me speaking out and standing up for my child – helped THEIR children get properly evaluated and begin to seek early intervention.

Which brings us to World Autism Awareness Day. This year, for the first time, the Munchkin is at a place where he’s starting to grasp the concept of autism. To understand that his brain works a little differently than others. Unfortunately, he also gets a lot of mixed messages. I know that sometimes, he doesn’t feel safe to be himself.

So it was time. It was time for me, and our family, and our “village” to stand up and be proud. To show the Munchkin how much he is loved just as he is. That he makes people happy, that he IS enough. Over a couple of weeks, via blog and social media, I asked folks to Light It Up Blue with us on April 2nd, and to send us their photos so that I could show the Munchkin how many people believed in him.

And I was not disappointed:

Just a few of our wacky "tribe" who wore blue to support the Munchkin on World Autism Awareness Day 2015.

Just a few of our wacky “tribe” who wore blue to support the Munchkin on World Autism Awareness Day 2015.

 

The Munchkin loved every single picture. He kept coming back to the computer saying “Mom, show me that one again!” This community, our little “village”, didn’t just “light it up blue”… you lit up my kid. To say I’m grateful for the spark you gifted my child with that day would be akin to calling Mozart “just a songwriter”.

So it’s official. We’re going to do this every year. We are going to CELEBRATE different. World Autism Awareness Day, though an important and serious occasion, is also a cause to celebrate. Because even in cases of severe, life-altering ASD, we are celebrating that WE ARE. That ASD families share a bond of hope and joy and pain and struggle and different-ness. As Temple Grandin says, my son is “Different… not less.”

I am going to celebrate that difference. I’m going to keep speaking out. I will continue to advocate. I will continue to try to empower my child, to teach him to love himself, to teach him that he IS enough, even while I work to help him succeed, in whatever form success will look like for his life. I am proud of him, and it is my distinct honor to be his mother, and his advocate. As long as I draw breath, I will rave about this boy who has so changed not just my life, but now the lives of others, just by being his own, amazing, different, autistic, authentic self.

And THAT is something to celebrate.