Thoughts from the wee hours…

Living with a dog with a small bladder is like having a newborn again. You sleep in short chunks with multiple mid-night wakings. After having just climbed back in bed after yet another late night trip downstairs with Molly, I have so many random thoughts floating around…

• Note to self: I sleep better if I claim my half of the bed from an Equatorial perspective (top half) rather than a meridian (right half) perspective. At least with the dogs… not sure about the pilot. 😆 These days when the Munchkin is gone to his dad’s, I end up with the Pug and the Bulldog in bed with me, while the lab is in the dog bed in the floor next to me. Did I mention they snore? They all snore…

• I am so behind on writing and homework right now it’s not funny… and I’m having so much trouble forcing myself to actually work. But the end of semester looms… and panic is starting to become a daily feeling.

• I miss my pilot. The worst part of this time in our airline life is not knowing when I’ll see him again. He’s working so hard to get through this challenging point in his career… and I’m so proud of him. But it’s hard. For both of us.

• My mother is so freaking amazing… she cleaned and reorganized my office this weekend and I can actually work at my desk now.

• There’s something really special, after having been blessed with a best friend for 22 years, to having a relationship with her daughter.

• The money for the semester never seems to last through the whole semester. I think one thing I miss about working, besides having a social life, is just knowing there’s a paycheck coming.

• It’s only 38 days until Rocky Mountain Christmas vacation! Hooray! I’m so looking forward to Christmas with both parents and my sister. It will be good to be away from Indiana over the holiday, so close on the heels of losing my grandpa.

• I don’t like having a friend living with chronic pain… but I do appreciate having someone who understands where I live who I can text at any hour to commiserate. My sweet friend in Georgia is dealing with a mess of back issues. I hate hearing how she hurts, how the pain is getting to her emotionally. But it is so comforting to be able to turn to someone who gets what it’s like to live this illness life, who knows how it feels to feel like a burden to others, who really gets how frustrating this can be and how much you just want to go back to “normal.”

• I had grand intentions on doing the “30 days of Thanks” thing this year… but lately I’m struggling to find the good. Not that I’m not very blessed and incredibly “wealthy” by so many standards. I have a home, a family, a beautiful child, an education, food to eat… but as I fight my own body every day, sometimes just to get out of bed, you get trapped in this internal place where it’s very hard to get outside oneself and recognize all that is there.

• Hypocortisolism is no joke. At a time when my pain is relatively well-managed, nothing is more infuriating than having to rest (or nap) after just a few hours… and on the days I force myself to get up and go all day, to then have to spend the entire next day (or more) recovering. I feel like I’m sleeping my life away these days, and I hate it. Thank God for my momma, who is helping me keep it together for my Munchkin. I’ll be glad when my new treatment starts working, in the hope that I can stay awake for more than a few hours at a time and maybe start to feel human again.

With that, I think I’ll try to catch a couple more hours sleep before class… hopefully…

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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.