Category Archives: chronic illness

The Meditation Path

365 days ago I started meditating. Truthfully, 365 days ago my therapist made me start meditating. She challenged me to do it twice a week. And I did it because I couldn’t NOT do a challenge. But it wasn’t pretty. I would put it off until the two days before I saw her. I begrudgingly took my meditative position on the floor with much sighing and fidgeting. But only after vacuuming, rearranging the pillows on the couch, doing dishes, brushing the cat and doing every other conceivable thing to procrastinate. Then I would meditate. For ten whole, excruciatingly long minutes. I would cross it off my to-do list with borderline violence, the pen pushing so hard on the paper it left a hole. I practically saluted my therapist when I reported I had indeed meditated two whole times in a single week — Mission complete, ma’am!

Basically I look like this. Except in my living room. In a bathrobe. And sometimes lying down.

Basically I look like this. Except in my living room. In a bathrobe. And sometimes lying down.

Then my therapist told me to meditate three times a week. I sighed. I rolled my eyes. I slumped down on my therapist’s couch. But then something happened. Somehow I began meditating more than three times a week. It’s possible that it had something to do with discovering Insight Timer, an meditation app. Not only does Insight Timer offer lots of guided meditations ranging in time from two minutes to one hour, it also keeps track of your stats.  It tells me how many days in a row I have meditated, my cumulative total session time, and (wait for it …) it has bar graphs! EEEEE!!! (And no, I’m not getting paid tow rite this post.)

Oooh! A Bar Graph!!! Ahhhh!

Oooh! A Bar Graph!!! Ahhhh!

I KNOW – IT’S AWESOME. Especially for a slightly competitive person  who might possibly thrive on PR’s and milestones. I know some of you are probably thinking, “But meditation shouldn’t be a competitive sport. The Buddha wouldn’t approve!” Fair point. But here’s the thing, I’m no longer doing it to beat last week’s minutes or to get to the next milestone of consecutive days. At least not primarily. I do it because it’s a daily habit. If a little competition with myself helps me cultivate a healthy habit, well . . . bring it on!

You’re probably wondering how meditation transformed my life. Have I miraculously  stopped yelling at my kid? Am I soaking up every moment of every day in a state of perpetual bliss? Am I more patient and loving with my spouse? The answers are no, no, and no.

I still yell, although I am slower to anger and much more aware of when I am about to lose it.  I have a deeper understanding that not every moment is meant to be soaked up and loved. Some of our life involves waiting patiently for change, seeking solace in the impermanence of every moment — good or bad. AND THIS IS OKAY. I asked Demetri if he thought I was more patient since I began meditating and he looked at me blankly, paused for about 20 seconds and said, “You started meditating?” He then became very busy with his glass of wine. I took that as a ‘no’. But I am on the path of being more patient and loving with myself. And that, my friends, is no small task. A year ago I couldn’t even find the path, but now I’m on it. I AM ON THE PATH. Or at least I’m on a path. Semantics.


Don’t Kill Your Television (At Least Until After the 3rd Blizzard)

Here in Boston we’re staring down snow day number five out of the last 10 days of school. It hasn’t been called yet, but as we’re expecting another foot of snow I’d say things are looking good/bad (depending on if you’re a six year old or the parent of a six year old.) Not that we haven’t had our glorious snow day moments of sledding, snowperson building, hot chocolate sipping, couch cuddling, crafting, and cooking. We have. But we’ve also had tantrums, crying, whining, door slamming, and, once, a chair throwing. Oh, and shoveling, snow blowing, de-icing, roof leaking, and pre-storm grocery shopping. We all feel a little cooped up. A smidgen of cabin fever. The teeniest bit of, you know, INSANITY.

Thankfully, I have a plan.

Last week, between snow storms, I had coffee with a friend. When I asked how she and her family had managed during the two feet of snow and two days of no school, she said, “Yeah, Jillian watched five hours of TV straight.” I waited for the hurried apology that usually follows such a confession. The and-oh-my-god-I-feel-so-bad-about-it or the and-I’m-such-a-terrible-parent-and-person. But instead, my friend just said,  “I got my work done and no one yelled.” And she didn’t even whisper the part about five hours of TV. SHE IS THE MOST BRILLIANT AND AWESOMEST FRIEND EVER.

I have felt bad about TV for years. YEARS. I worry that I let Zoey watch too much. That her brain is rotting out of her head and it’s all my fault. That all this excessive TV watching proves I’m not a good enough parent.  And so I make her turn off the TV even when I’m fatigued, in pain, and frankly, have no business interacting with another living thing. Then I yell. Sometime she cries. And things are worse. And I curse myself for not doing what I know I need to do, which is use the TV to my advantage.

Lately, I’m getting better at reasoning with myself. It’s only PBS Kids. It’s not like it’s FOX news. Or porn. I try and remember that sometimes TV can keep the peace in the house. It can give us all the extra down time we need to get through the day successfully.

So that’s my big snow day plan: TV.  We will play in the snow (meaning I will watch Zoey from the living room window as she frolics about). Zoey will drink hot chocolate with fresh and buoyant  little marshmallows (Points for me! I remembered to buy marshmallows so now we can throw out the stale ones left over from 4th of July!). We will yet again make some kind of craft involving pipe cleaners, ribbon, glue, glitter, and the last remaining shreds of my patience. We will watch TV. For as long as necessary. And instead of feeling guilt ridden and ashamed, I will feel smug and joyful. Because that’s what snow days are all about. Bring it on, third blizzard of 2015! Bring. It. On.


11 Things to Know About Starting the Paleo Diet

At the beginning of January, I went to a pain clinic hoping to regain some measure of control over my back and foot pain. Fibromyalgia, I blame YOU. The first thing the doctor said to me was, “Have you ever heard of leaky gut syndrome?” And I said, “Ew. No.” He launched into a brief explanation which kind of sounded like stuff that should exit one’s body via, you know, poop, is instead absorbed by the body. He then said that not every doctor “believes” that leaky gut is a real diagnosis. AWESOME! So I may have two diagnoses that some people mistake for “crazy”. But, on the plus side, leaky gut sounds super sexy, don’t you think?

But I digress. The doctor immediately recommended that I eat a Paleo diet. I quickly agreed. I would much rather heal my body through food than through medication. Plus, I was already not eating gluten so how hard could it be? The doctor said, “So you can’t eat grains, dairy, sugar, or alcohol. And be strict for the first 30 days.” Then he scribbled down the name of a website and sent me on my merry way. I’ve totally got this, I thought. I’m great at specialized diets. And I don’t even drink alcohol. Bring. It. On.

But then I started reading. I was almost instantly overwhelmed. Not only is Paleo a new way of eating, it’s a whole new way of cooking and even thinking about food. At least for me. And it doesn’t include chocolate. I read and read and read. Also, I cried a little. It’s hard to undertake something of this magnitude when you already feel fatigued and in pain. But I am not one to be beaten by a diet. I mean, come on.  Finally, I felt I could possibly maybe probably give it a try. So I did. I just finished my second week. Which, by the way, is the longest I have ever gone without chocolate. I’m sure my trophy will be arriving in the mail any day now.

Many of the blogs and message boards I encountered are written by people who have been eating Paleo for years. They have their rhythm down. They have great recipes and a lot of great information to share. But some of these people have forgotten what it’s like to start Paleo. Clearly, I am not a Paleo expert, but I wanted to share a few tips about getting started.

1. You need at least three days to read, plan, shop, and cook before you officially start.
This is not an easy diet to just jump into. It takes a lot of research and recipe finding to get started. You will need to shop for unfamiliar ingredients (like coconut aminos and grass fed beef gelatin). And it helps a TON if you do a little bit of cooking before hand. I made this chili and these muffins and then froze most of it.

2. You must do a meal plan.
I hate to break it to you, but you will not be making well balanced and tasty Paleo food on the fly. Especially not during your first week. Plan ahead at least three days and put grocery shopping on your schedule. Save your meal plans so you can loop back to them in a few weeks. If you do not do this, you will find yourself curled up in a ball on the couch with tears leaking down your face because you have no idea how to feed yourself with the food that’s in the house. True story.

3. You may feel like total crap for the first . . . little while.
My second day on the diet I was convinced I was getting the stomach flu. I felt horrible. But, after consulting google and many message boards, I found out this is normal. Wouldn’t it have been lovely if my doctor had mentioned it? Apparently, adjusting to the Paleo way of eating can take 3 days to 3 weeks. During this time our bodies may show signs of detoxing, such as: flu-like symptoms, nausea, dizziness, fatigue, frequent urination, irritability, etc. You can read more about it here.

4. Paelo makes you dumb.
Well, okay, not technically. But it often causes preeeety thick brain fog. I can fully attest to this. I was co-leading a meeting the other night and someone asked us to give a brief history of our group. I looked around, smiling, thinking, Hey! It’ll be super interesting to hear about this! Then I realized that *I* was expected to give the history as I, in fact, am the founder of the group. So, don’t schedule any big job interviews or presentations the first week on Paleo. It’s kind of like, Um, excuse me? Can anyone give me directions out of this paper bag?

5. Gimme an ‘F’!
Sadly, the ‘F’ is not for fantastic. It’s for fatigue. The first week may be filled with it. Not tiredness. Fatigue. I spent large parts of the first few days in bed, only coming out to cook and eat.

6. You might not be getting enough calories  . . . especially when you first start.
Maybe it’s because you’re not feeling well or maybe it’s because you’re too tired to cook, but you may not be getting enough calories. My third day on Paleo I was feeling extra fatigued. Per the advice from a Paleo site, I went to FitDay to total my calories. Even though I ate breakfast, lunch, and dinner, and felt totally full, I had eaten less than 900 calories. Not enough. I immediately ate half a sweet potato and half an avocado and felt better. (That’s right! Avocado’s on the menu, baby! Gimme a ‘G’ for guacamole!)

7. Join an online support group or message board.
I am not a fan of online support groups. But, in this case, the information from these groups has been super helpful. In fact, it was one of these groups, not my doctor (Yup. Third time I’ve mentioned this. Nope, not bitter), that explained about the ‘low-carb flu’ and why I was feeling so horrible. People doing Paleo have the best info on how to do it, how to feel good while doing it, and how you can tweak your plan to make it right for you.

8. Freeze stuff.
If you know you like a recipe, make double and freeze it in individual batches. Paleo involves a lot of cooking and it is totally awesome when you can pull a good meal out of the freezer.

9. The grass fed beef gelatin everyone talks about is actually good . . .
Because it’s flavorless and you can dump it in smoothies. The idea of eating beef gelatin – a substance derived from collagen found in animal bones – totally freaked me out. But it really does have some health benefits. Not to brag or anything, but I think my skin is already looking better! Plus, Zoey is totally fascinated by it and will eat anything that has gelatin in it. Of course, she shrieks, “I’m eating cow bones!!!” the whole time. But still.

10. Save your bacon grease!
Pre-Paleo I didn’t eat much bacon. And If I did, I would always stare at the grease with open hostility wondering how to best dispose of it. Now I save it. ‘Hoard’ might even be a better word choice. I’ve been known to snap at anyone who goes too near the pan, “Don’t touch my bacon grease!” The reason is this: vegetables (or anything, really) taste awesome when sautéed in bacon grease. So when you’re making your sweet potato or zucchini pasta (as you most assuredly will be) the bacon grease comes in handy.

Ooops! Wrong kind of bacon! BTW, I still want a separate movie for Willard and Rusty . . . THEY HAVE A SPECIAL STORY THAT MUST BE TOLD!

Ooops! Wrong kind of bacon! BTW, I still want a separate movie for Willard and Rusty . . . THEY HAVE A SPECIAL STORY THAT MUST BE TOLD!

11. It will get easier-ish. 
I’m through the second week and my body is starting to adjust, my mind is clearing, and I have at least an inkling of what I’m doing. My freezer stockpile is growing and I have cooked some really delicious meals. So, yeah, easier-ish. I bet in another few weeks it may even be full on ‘kind-of-easy’.

I’m going to wait the full 30 days before I evaluate Paleo’s effect on my fibromyalgia pain and fatigue. I’ll keep you posted!

What are your Paleo tips?

And Then My Hope Was Restored!

I’ve had eight doctor’s appointments in the past two weeks. While I could tell you about the pain clinic (insighful!), or the new diet they put me on (Paleo!), or even the new hippie body and energy work I’m doing (craniosacral and moxibustion!), I’m not going to. Instead, I am going to use this sacred blogging space to tell you something else.


Screen Shot 2015-01-21 at 11.25.48 AMThey’re practically lightsabers.

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Maybe you knew this. Maybe you, unlike me, are brave during your exam. But I, probably unlike you, throw my arms over my face and pretend that no one can see me until it’s over. But the lightsaber/speculum made me crack up. To the point that my doctor was all, “Um, you really have to stop shaking and laughing now.”

"I am your doctor!"

“I am your doctor!”

Then she added, “You know, This is harder with a moving target.” For some reason that was sobering. So I attempted to control my laughter. I attempted to study the poster on the ceiling of a roly-poly puppy trying to climb over a low stone wall. The phrase, “You can do it!” was in bold at the bottom. And I thought about how the last few months had really kind of sucked health wise. Lots of pain, trouble walking, no energy. The same stuff that always comes and goes. I looked at that poster and thought, I can do it! I can be that dog and get over the wall!

No, not really. What I actually thought was how I hate inspirational posters. But that thought was closely followed by, Huh. A light-up speculum. Who knows what they’ll think up next!? And that, my friends, is the medical community providing hope (and light!) in the darkness that is chronic illness. Sort of.

Clearly, I’ll take my hope wherever I can get it.

A New Set of Wheels

Over the weekend I was pushed around in a wheelchair. In a very busy store full of not-so-jolly holiday shoppers. By Zoey. That’s right, my six year-old pushed me around in a wheelchair. The kid can corner like nobody’s business. Yes, we might have taken out an entire rack of bras, a cardboard cutout of Princess Elsa, and a bin of fleece blankets that were, frankly, piled way too high. But no one was hurt, not even Elsa. It’s possible we also dented the back of a metal shelf, but it’s the back, who cares. Zoey abandoned me only once, thoughtfully parking me in front of a Ghirardelli chocolate display and saying, “Here, you look at your dreams — I have to go look at those princess watches.”

(pause for wheelchair selfie!)

The reason I was in a wheelchair is this: 15 months ago I got plantar fasciitis in both feet after I spent a weekend walking around in flip flops. Except, of course, it wasn’t normal plantar fasciitis. “Normal” being the kind that responds to physical therapy and/or cortisone shots. In fact, those things made it worse. Way worse. Like I-had-to-crawl-around-the-house-on-my-hands-and-knees worse. So then doctors started saying maybe it wasn’t really plantar fasciitis. It was more plantar fasciitis-y and maybe it was fibromyalgia presenting in a new way. (This is what doctors generally say to me when they don’t know what’s going on or how to help. Sometimes it is fibro and sometimes it’s something else — like strep or a torn lateral meniscus.) They doctors started saying things like I would “just have to live with it” — live with this foot pain that prevented me from walking more than a short block.

This pissed me off. Fortunately this anger propelled me head first into finding a cure. “I’ll show those know-it-all doctors,” I thought. “I will find a way to get better and then I WILL RUB IT IN THEIR SMUG DOCTOR FACES!!” So I made my way to an acupuncturist who did make me better. For a while. For a blissful 4 weeks. Now my left foot is worse than before. It’s a throbbing painful mess. And I’m worried that maybe I will just have to live with it because acupuncture isn’t working this time. I’m scared I will have to live with a limited ability to walk.

Clearly people have figured out to live with way worse situations. I get that. But I have always loved my feet. Not the way they look (although if I’m being honest, my feet have been described as “long and beautiful”), but I love my feet for what they do. I love walking. Walking in my neighborhood. Walking along the Charles river. Walking to get tea with a friend. I am over the moon about running. I L-O-V-E to run. I have always loved to run. I remember sprinting across the bright green of a soccer field in third grade and thinking about what a joy it was — the sun on my face, my lungs bursting, my feet pushing off the grass and then flying through the air. I felt the same in high school and college. And even a few years ago when I very slowly ran a half marathon, I ran with the deep thrill of loving each step. Through some miracle, I never took running for granted. I still dream about running, my feet moving slowing up and down while I sleep.

Now I can’t run. Or even walk very far. It’s painful just to walk the short distances through my house. It hurts to stand. But, wow, do I have a new appreciation for standing. We stand when we cook, when we shower, when we wait to pick up our kids from school. We stand when we talk to other people, when we put away groceries, when we move the laundry from the washer to the dryer. We stand all the freaking time. I am able to stand, but only for a short time, and always with pain.

Hence the wheelchair. I can stand. I can walk. And I’m sure I could run if it meant saving Zoey from an oncoming semi-truck. But I’m not like I was. I’m world has become even smaller because of this new physical limitation and I’m a smidgen angry about it. Once in a while, late at night, my heart feels broken open and raw because of the things I can’t do. Not to be overly dramatic or anything.

But here’s what I can do that I couldn’t do before: I can race around the gleaming floors of a store, my daughter pushing me too fast and taking the corners too hard. She is giggling, high and sweet, her head at the same level as my ear. I can hear her breathing fast and deep. I can imagine the feel of her fluttering heartbeat in in the palm of my hand. This is a new adventure. For both of us. And there’s nothing to do but laugh when an entire rack of triple-D bras come cascading down on our heads. There’s nothing to do but laugh, take the next corner even faster, and aim to take down the entire display of Disney princesses.

“Onward ho!”


The Hamster Wheel

Having chronic illness is a lot like being on a hamster wheel. We’re going-going-going! We’re keeping up! Woo-hoo! Check us out! And then . . . WHOOPS! We get thrown off the wheel. We have to lay in those damn wood shavings for a bit and then, eventually, we have to get back up. Getting back up is harder than it looks. Because it actually doesn’t look like much of anything. It looks like laying low. It looks like starting from the very beginning . . . again. And most of all it looks like teeny tiny hamster-sized steps.

I fell off the wheel about a week ago. I’m fatigued beyond reason. The pain is ramped up. But those two things I can deal with. It’s this last thing that’s keeping me down. My feet hurt. Like really hurt. Just walking through Whole Foods to get five items is too much. Walking the dog to the end of the block is beyond my ability. Standing and talking to another parent at school pick-up is torture.

And do you know what caused this mess? Going to a craft store and standing for too long. A CRAFT STORE. This is not a cool story. It’s not a hey-I-apprehended-a-purse-snatcher-over-the-weekend story. It’s not even an I-ran-a-10k-this-weekend story. It’s a lame story. I mean, if I had been horribly burned by a glue gun or if a shelf of early Christmas decorations had fallen on me, that would be something. But no. My story is that I was at a craft store, you know, standing still.

All of last school year and through the summer I dealt with worse foot pain that this. But then I started acupuncture and it got almost completely better. And for some reason, this getting better and then getting worse has thrown me off the wheel. It’s thrown me off hard. Getting better-ish and then getting worse-ish over and over and over again is what chronic illness is all about. And I thought I’d made my peace with it. But apparently my feet haven’t.

I’m trying to remember all the things that help me get back on the wheel of relative health. Or at least of relative peace in my mind and heart. So here is what I know about surviving the worse-ish part of chronic illness:

1. Keep any health related appointments.
It’s tempting to hole up and stay buried under a blanket with a bag of chocolate chips. But if there’s any possible way to keep my appointments I do it. I may show up in sweat pants with unwashed hair, but I show up. Yesterday I went to acupuncture and today I am going to therapy. HA! I am SO winning this one!

2. Meditate.
Check! Today I’ve already meditated once. Lately though I’ve been meditating twice a day. I always use guided meditations because my mind is too jumpy to be left on it’s own. Meditating is soothing and lets me have a moment of peace in my body. And, frankly, in times like this, it is something to do. I can only read or watch tv or do anything that involves standing (i.e.- cooking) for so long before my body’s had enough.

3. Do something nice for someone else.
It’s good for me to get outside my own head and think about someone else. And actually doing something for someone else is not only a distraction, but it makes me feel useful. I made chocolate covered strawberries for the neighbor . . . and yes, I totally licked the bowl. Gold star for me!

4. Remember that I am like the weather.
This means remembering that my pain, my fatigue, my anger are like the weather — if I wait just a minute it will change. The shift may be subtle. But what I’m feeling now is only that – now. Knowing that this isn’t forever is a huge relief. That’s right, baby! I’m like a hurricane and a spring day all in one!

5. Look at my thoughts, not from them. 
I’m trying really hard to observe my thoughts from the shore instead of putting myself right in the middle of the class five thought rapids. This looks like me going, “Hey, look! Here comes a thought! I’m feeling anger at being physically limited and in pain. What an interesting thought. Let me watch it float on down the river” vs. “OHMYGOD I AM TOTALLY DROWNING IN PAIN AND ANGER AND I CAN’T A BREATHE AND I AM GOING TO DIE HERE IN THIS SUPER PAINFUL AND SCARY MOMENT!” I get an A for effort on this one. So that translates to  . . . a half a point?

6. Write.
Writing every day makes me feel useful. Working on projects makes me feel connected to a larger timeline. It lets me leave my body and go to a place other than pain. And hey, look! I’m writing now! Another point for me!

7. Have something good to read.
Please. I always have something good to read. It’s an escape hatch.

8. Have something good to watch.
Okay, so I’m struggling with this one. I need a new show. I tried to watch the free episode of Homeland last night but then I realized that I’m behind by at least one season. *sigh*

9. Eat healthily.
I’m all over this one! Stuffed zucchini and peppers has already been made and it’s in the fridge waiting to be heated up for tonight! I. Am. Awesome.

10. Connect.
I feel better when I reach out to friends and family. A phone call, an email, whatever. Anything to keep my world from getting too small. So if I call you today, please pick up!

So, basically, I’m winning. Do you hear that, chronic illness??? I. Am. Winning. I’m doing what I know I need to do. And I guarantee it’s WAY harder than it looks. But this how I’m fighting. This is how I am strong. See you back on the wheel, baby!

What do you do when you’re feeling worse-ish?

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A Happy Life (warning: sentimental)

Last night I put Zoey to bed. We read some Harry Potter and then we sat in the dark listening to “The Rainbow Connection” by Sarah McLachlan. I sat in rocking chair while Zoey was curled like a comma under her fleece blanket on the bottom bunk. Her blue nightlight glowed softly in the corner and her dolls were perfectly arranged on the floor next to her bed. Zoey gripped two lovies in the crook of her arm – a pink owl and a slouchy panda bear. I looked around Zoey’s room. On the top bunk sat a large purple and pink unicorn, a witch’s hat, and Zoey’s soccer uniform (which she lays out every Monday for the following Saturday). From the walls hung one of her finger paintings,  a picture of Mickey Mouse, and over the windows, two yellow and pink curtains I sewed for her. A mobile of our solar system spun lazily over our heads, all the planets in shadow. On the floor were various books, an old magazine with a picture of an arctic fox on the cover, and a pair of crumpled footie pajamas that hadn’t yet made it to the hamper. I rocked softly and wished with all my might for Zoey to have a happy life. A life in which she finds her place. A life in which she loves and is loved by others. A life that feels cozy and safe and wholly her own.

I sat there rocking and wondered what it is that my precious daughter will remember. Will she remember how we sat side by side for three hours, each making a holiday wreath? How our shoulders bumped as I reached to glue down a piece of yarn for her? Will she remember dancing in the kitchen to “Proud Mary”? And how we sat on the living room floor together – me combing out the short fluffy fur on her stuffed animals and her affixing brightly colored and fiercely knotted ribbons? Will she remember my apple pie and how I always make a little crust heart with her initials to put on top?

Or will she remember how often before dinner all the little frustrations get to me – everything magnified by fibromyalgia pain? Will she remember how I was snappish and couldn’t be pleased? Will she remember Demetri and I exchanging words in the too bright light of the hallway – the exact tone in which we hurled feeling at each other about something so small that it shouldn’t have been given voice in the first place?

Or maybe she’ll remember it all. Maybe she’ll remember the shadows and the light. Maybe growing up here will leave a few tender places, small little bruises on her heart. Maybe growing up here will help her blossom like the first thick, strong flower of spring.

When I get right down to it, I don’t wish for my daughter to go to Harvard or for her to be famous or rich. I wish for her to have inquisitiveness and strength. I wish for her to have enough. To laugh easily. To love and be loved. And I wish for her to always want to come home.

apple picking