Saturday, August 31, 2013

The Girl Who Loves Worms

 Once upon a time there was a girl who loved worms. She would ride her bike or walk up and down the street saving worms from certain "dehydrification" on the hot pavement. This worm loving girl once crawled under a very large van to rescue a worm from certain death by flattening. She gathers her worm friends together and talks to them every day and tries to train them to come when she calls. Worms are her playmates, her friends. 

Then one day things changed. I'm not sure why they changed or how they changed, but changed they did. Her love of worms took a disturbing turn. 

I suggest you brace yourselves for what you are about to see. These aren't stunt worms, fake worms, or gummy worms. They are very real, very alive worms. And a girl. A strange, scary girl. Who loves worms. 

Ok, so she didn't really eat the worm. And she still takes very, very good care of worms. Apparently this is what happens when my kids are allowed to take the camera outside to take pictures of a frog. Let's just say I wasn't prepared for these photos when they popped up among very nice photos of a frog. Children need to prepare their mother for such things, especially when she's suffering from severe nausea. 

Thursday, August 29, 2013

So Much for Sleeping In

This was the first morning in a long time that I had the chance to sleep in. I was so looking forward to an extra hour or two of sleep.

Enter two children, up much too early, excited about a visit from the Tooth Fairy during the night. Our Tooth Fairy is a sneaky one. S/he takes the child's tooth and then hides their prize. The Loser of the Tooth wanted to start looking, while Younger Sister knew that Mama and Daddy's alarm hadn't yet gone off, and tried to convince him to wait. The cranky arguing that ensued woke Mama, even earlier than she usually wakes. 

Banishing children to their room until the alarm sounded, I was able to at least have twenty more minutes of relative peace. My loving husband brought me a hot rice sock for my back soon after the alarm. Heaven. I nearly drifted back to sleep.

There's nothing like the words "bear across the street" to propel someone from almost asleep to mostly awake . My first reaction was to tell my husband to take a picture. When fully awake, I called animal control to alert them, and then gathered the kids so they could see the antics of the black bear tearing through garbage cans. The bear settled in on the concrete block in front of our house with his scavenged breakfast. We kept someone at the window to alert us in case a car arrived at the end of the street or our neighbors emerged from their houses so we could warn them. 

So much for sleeping in. 

The bear eventually made its way back into the woods behind our house. Since I was up, I opted for breakfast, meds, and curling up with a good book. 

Apparently I didn't make it too far into my book - I ended up having a nice morning nap instead. Perhaps all was not lost. 

Wednesday, August 28, 2013

The Sanctuary of a Moment

Gazing out over a watery field of lilypads, I realize even the darting dragonflies take a moment to find a perch and rest. I could sit here for hours, taking in this beautiful view, letting my mind empty, freeing it to wander amongst the floating green leaves and beautiful blooms. Each moment in this place is a sanctuary. 

Too soon, we need to hike on. Overcome by Great Peace, I leave my fears in the sanctuary of the pond. God will take care of  them while my heart rejoices with renewed confidence in my body. We're two miles in, only a mile left to go. I tell myself I can do this. It won't be like the last time. My legs won't fail me. They are stronger. I am stronger. I believe this, but after a few steps I'm unsure whether my body got the message.

The last time we took this hike, three years ago, about a mile from the end of the trail my body started to fail. Leaving my husband and children behind, I plodded along as fast as my weakening legs would carry me, knowing full well that if I stopped, my only out would be on a stretcher. Making it to our van, I collapsed into my seat, totally spent. It was difficult not to pass out in sheer exhaustion, but the pain in my back and my legs helped keep me awake. My husband had to lift my legs into the van when he at last arrived, as I could no longer move them.  It was then I knew for certain something was very, very wrong.

Some time after that came a cascade of diagnoses. Psoriatic arthritis, Ankylosing Spondylitis, Celiac, Autoimmune Hepatitis. With those names, came new fears: prognoses, treatments with drugs with warnings pages long, lifestyle changes, limitations.

And then something changed. Overcome with worry, with fear, with sadness that threatened to swallow me whole, I hobbled outside for a moment of quiet. I took deep breaths. I noticed the way the sun danced off of the leaves of the trees. In the sanctuary of that moment, I knew I had only one option if I was going to not only survive life, but live it.

Removing the cloak of fear that weighed me down and shrouded me from life, I placed it at the feet of a Friend, knowing He would take care of things - take care of me. 

Laying down my fears allowed me to move forward, to get to know myself as someone living in a complicated relationship with my body, and to know that my life was going to be whatever I made of it.   

I reach the end of the bridge, the trail stretching before me. Taking a deep breath, I feel the strength of my body, the sureness of my spirit, the sanctuary in every second. I am free. 

Monday, August 26, 2013

The Inevitability of Poop

Everything was going smoothly. Block were creations built. Books read. Children were fed. Diapers changed. Naps taken. Post-nap diapers checked and were dry. Drawing and crafting and trains and reading were happening all over the place. 

Then suddenly, an unmistakable odor permeated the air. Signalling to two older kids, we each grabbed a diaper-clad child. Poop. Poop. More poop. Three stinky diapers. At the same time. Along with several loud, rowdy kids singing a chorus of the Dinosaur ABC song at full blast. And craft mess all over the dining room, dirty dishes piled on the counter, and a pile of yet-to-be-dealt-with clean laundry on a living room chair. 

Enter Dad to one of the poopers, as if on cue. The odds of him entering at a more chaotic moment incredibly slim. 

What must my friends think of me, tv blaring, noisy kids, house a mess, and poopy kids getting diaper changes in three different rooms of the house? Five minutes earlier and he would have entered to children sitting relatively quietly at the table chatting and doing crafts, others building trains and airplanes out of Duplos in the living room, another playing physics games on the computer. Five minutes later and he would have witnessed fort-building and cleaning up craftiness and hysterical laughter at a video of a squirrel playing in a sprinkler. 

It used to be that I found myself mortified when friends walked in on such scenes. The realization that my friends would probably laugh (or cry!) right along with me through it all, and that many of them have probably had less than stellar moments in their households as well, has helped me see the humor in and fleetingness of such moments. With the number of children in diapers in my house on any given day, the trifecta of poop was inevitable, right?

I personally think it was a poop conspiracy. The poopers were, after all, just moments before huddled together "reading" to each other in toddler-babble. Perhaps the books were a cover for more covert functions. 

Now that everyone is again clean and happy, we go back to our games of Catch the Escaping Baby, In This House We Share, Distract-the-Mama, Flush or Fail?, and I'm Not Tired. 

Speaking of I'm Not Tired - I won that one! One point to Mama. Several thousand to the children. But then, that's the point, really. It's on the inevitably crazy days that we make the best memories. 

Thursday, August 22, 2013

In Search Of

In Search Of: prospective significant other with debilitating illness, who will most probably need increasing amounts of care throughout the years. Must frequently go to doctor appointments, take various medications and supplements that are difficult to keep track of, and require some sort of mobility device.

Yeah, that never happens. But it is one of the fears that weigh down people with chronic illness. Those that are single tend to fear never being wanted by someone else, and those that are married often fear that they are or will become an unwanted burden on the ones they love.

I feel blessed to be married to a man who loves me no matter what my physical condition and who puts up with my ever-changing health status, ability to do things, and patience levels. He even sticks around when I'm on prednisone and unleash on him all the anger and frustration I've refrained from expressing to my children throughout the day. He wrangles children through my  myriad doctor appointments and when I have my post-Remicade crash. He laughs with me, and perhaps at me, when my brain is malfunctioning and is learning to understand my sense of humor about my body, which tends to have its own opinions about how it's going to function and changes its mind on a regular basis.

What to tell people who have yet to find a life partner who loves and accepts them, uncooperative bodies and all?

I'm not sure.

I do know that what makes people most attractive is having a positive outlook on life, a sense of humor in difficult situations, and being comfortable in your own skin. Living with chronic illness gives us ample opportunity to practice all of these things.

Soon after my diagnosis I realized that I'd found a new Life Partner. In recognizing this, I came to the conclusion that I needed not only to get to know my new life partner, but to get to know myself with this life partner. Whether this life partner is a debilitating illness or chronic pain or both, feeling comfortable in your new role is essential to kindling the spark within yourself that will attract others to you.

Before you go in search of love, love yourself. Then everything else will fall into place. 

Wednesday, August 21, 2013

What School Looks Like

School has begun! It seems like just yesterday that school ended. Our kids are really enjoying themselves, and I am too. 

I missed out on taking photos of Home Ec, which included cooking, laundry, and various cleaning activities, as well as the sewing project going on in the basement. I also missed much of Science and Nature, Geography, and History. You see, we have grades preschool through high school here, and I can't seem to be everywhere at once. Thank God we have many awesome teachers on staff. Haley is the Queen of Home Ec; Zachary, the Master of Math; Coren, the Professor of Natural History; Alex, the Game Guru; and Alia, the Philosophizing Physiologist. 

First thing this morning, we learned about frogs and toads, with a little nature photography mixed in upon the discovery of this gem. Can you find it?

We moved on to Math for preschoolers through middle schoolers, including measuring, counting, translating block units of measure into inches, and so on. We used addition, multiplication, and division, as well as basic math and algebra concepts depending on the age of the scholar. We learned colors and patterns and how to build a tall tower with structural integrity - the base was redesigned twice by one of the five-year-old builders.

The Arts took part in our day as children created mixed media masterpieces of paper, stickers, glue, straws, popsicle sticks and other materials and played such instruments as recorders, harmonicas, drums, and sang a bunch, too. And then there was the magical performance of "The Princess and the Bee," an original play by Fiora and Alia. 

Math skills were also put into practice in the land of teens and tweens, along with strategy and other skills necessary in a Magic the Gathering battle. 

English was a lot of fun - we learned letters (and numbers!) from license plates and bumper stickers and parts of speech via Mad Libs. 

Then there were the endless books read (the count as of 4pm is 28, and that's just the books read to the littles).

Let's not forget phys. ed. Our walk today included biking, scooter riding, walking, "Follow the Leader," running through a sprinkler, running, and a few races.

All in all a day full of learning that looked a lot like life, and fun, and Mama's favorite part - cleaning the house. Just kidding ... but that part was helpful. I feel fortunate to be witness to much of my kids' learning, as well as learning much more from them than I can ever hope to teach them. 

School has begun! It seems like just yesterday that school ended, because it was - life is school, and learning never ends. I look forward to finding out where our adventures in learning take us tomorrow. 


Monday, August 19, 2013


My mind is blank.

I have lost the ability to think. My mind has scattered in so many directions that it can't form one cohesive thought. I have no idea what I'm supposed to be doing with my day. What household tasks need to be done. What errands need to be run. How to form a proper sentence.

All I know is the physical - that I'm tired; I'm hungry; I feel weighed down and hollow.

I haven't eaten in eighteen hours, which could have a lot to do with it. I haven't eaten much in a week, which could have more to do with it. The nausea has to go away soon, doesn't it? I find myself not caring about food, forgetting that feeding myself is important. Incredibly dangerous, that. How easy it would be to slip back into old, old ways of ignoring the need to nourish my body.

So I eat. And feel worse. 

So I rest. And feel worse.

Last week was spent with on-and-off sick kids, and any arrangement of other people's kids in my care. I think I was sick on Thursday, but it was difficult to tell considering the nausea and headache that are now my norm. I did nothing last week. Nothing beyond what needed to be done. We didn't go for walks. I spent too much time laying in bed reading to children, and to myself. When I don't move, my body becomes unhappy. This week, I pay for it with no energy, a painful, painful back, and an inability to think.

All the kids are tired and cranky today, which is not helpful to my own tired and cranky situation. I want to go OUT. Walk. Enjoy the day. They want to read, read, read. Sew things and create things and build things. Inside. It's too small inside. I need to move, to walk, to not be tempted by comfy resting places of doom. 

In an hour, out we'll go, despite any protestations. I'll lure them there with popsicles if necessary. We'll have a scavenger hunt of sorts as we walk, looking for nests and animal-shaped clouds and crocodiles and all the colors of the rainbow. Perhaps I'll find the antidote to blanknicity along the way, too. And we'll all feel better.

Thursday, August 15, 2013

Runneth Over

I have a hangover. My mouth is dry, my head is pounding, my body is screaming at me to just stay in bed. But it's not because I had an exciting night on the town or even because I shared a bottle of wine with my husband. In fact, due to my autoimmune hepatitis, I can't even have one drink. It's all due to Remicade, the medication that allows my psoriatic arthritic body to function.  And lucky me - the hangover doesn't last just hours or the better part of a day - it can last three or four days. These days, the nausea sticks around and the headache comes and goes for weeks.  It's just not fair! If I'm going to suffer like this, I'd prefer it be after too many margaritas.

Some days I feel completely overwhelmed by the complexities of living with multiple illnesses and with spending so much time feeling physically bad in one way or another. I can never seem to keep straight when I have to get bloodwork done for which doctor, as I see a rheumatologist, a gastroenterologist, a hepatologist, and an endocrinologist. I'm never sure if what I'm experiencing is a side effect of medication, a symptom of one of my illnesses, or another ailment altogether. It's frustrating that the common symptom of all my medical issues is fatigue. I live in an almost perpetual state of exhaustion. It's hard. It's more than hard. It's impossible. At times I just want to stomp my feet and rail at the heavens ... please take all this away and let me be!

Some days I just can't help but feel overwhelmed by it all. I just want a day off from sick. A day off from tired. A day off from the 24/7 job of managing my illnesses. And that's an ok thing to want, a perfectly acceptable way to feel. 

But I can't let that feeling take over my life, be the norm. What kind of life would that be? So when tears stream down my cheeks for no apparent reason, I take it as a sign that my cup o' can't cope runneth over and relief is needed. Now. I write through it, pray through it, rest through it, play through it, and invite things into my life that relieve instead of overwhelm. 
Inspiring books, walks with my kids, rant sessions with a friend who understands, and writing, praying, writing, and praying some more are some of my most effective relief valves. They allow me to remember that God's got this.  That each day is a gift, and only I can decide what to do with and how to feel about what's inside. That in each moment lives a sanctuary of God's peace, should I open myself to feel it. That I can lay down my worries and my anger and all that stuff that rages through my brain and rest in thankfulness for the multitude of blessings in my life. And then my cup runneth over with gratitude and peace.

Monday, August 12, 2013

Love-Hate Relationship

AC and I have a love-hate relationship.

When I feel like I can barely breathe because everything including the air around me seems too heavy, AC is there to make it all better. When I'm having trouble sleeping, and the uncomfortable tossing and turning is driving me crazy, AC cools my temper and soothes me to sleep. AC also keeps me sane while running errands or on long car trips in van full of kids. 


AC is also rough on me. AC makes me feel worn out, lethargic, and is frankly a pain. AC's constant droning drives me crazy. AC cuts me off from the outside world, and sometimes makes me feel more stifled than a heat wave soaring over 100. We fight often. In fact, AC sometimes even drives a wedge between my husband and I. 

Things have got to change.

Summer needs to wind down and give way to Autumn, allowing cool air to waft through the windows, so we can banish AC to the basement for another eight or nine months. Then all will be well. 

That is, until Winter comes and along with it my constant issues with EH. But that's a love-hate relationship for another season. 

Wednesday, August 7, 2013

If Only

If only people could see what it's like and sample the pain, maybe they'd understand.

I wake up every twenty minutes or so throughout the night, pain shooting through my hip, daggers of pain between  my shoulder blades, hands turning into claws. Painfully adjusting my position, I try not to cry out, as the rest of the household sleeps peacefully. I pry my hands open and lay them flat, in hopes that in the morning they won't be useless fists.

Morning mercifully arrives, the night's torture over, a new day dawning. Hot pads applied to various parts of my body, I start working on stretching my legs, my arms, my frozen hands. It's all I can do not to scream some mornings. My body resists, trying to curl in on itself and seeking the sleep that didn't come the night before. I dare not take pain medicine if my husband is going to work because once the pain is dulled, my body will seek sleep whether I can afford a nap or not.

It's a struggle to get out of bed. Oh,so painful. But I need to get moving to feel better. If I don't stretch, move, my body will freeze, the pain will increase, and I'll be useless. If not vastly improved after an hour or so, it's sure to be a rough day.

If only people could feel what it's like to be suddenly free from a disabled body, maybe they'd understand. 

That I can one day barely be able to function and the next hike up a New Hampshire mountain is unfathomable to most. But it's my reality. It's the difference between just-after-Remicade-infusion and week-before-Remicade. I could have a good week or three, or flare again just days after infusion. Thankfully it's usually the former. 

Even on my good days there's plenty of pain from damage already done, but it pales in comparison to full-blown PsA pain. Even on my good days, the exhaustion is there, as I'm now trying to figure out what treatment is going to work for autoimmune hepatitis, which saps what little energy I regain with each infusion. 

It's a balancing act, my life. A balance of doing and being; of movement and rest; of treatments for multiple autoimmune conditions; of pain meds and anti-inflammatories. It's not knowing from one hour to the next how I'm going to feel. It's knowing I'll be in pain, but not being sure if it will be manageable pain or that of the excruciating variety. It's difficult and depressing and frustrating. It's my life.

But it's also a blessing. I have learned Slowing Down. I've learned Patience (well, kinda). I've learned Perspective and Being Gentle With Myself and How to Spend the Day in Bed and Still Accomplish Great Things (hey, that sounds like a blog post...hmmm....). I've learned the preciousness of every step, every movement, every breath of fresh air I get to take a mile or more from civilization. I've learned to get along with Uncertainty, to live with Pain, and to find Good Things on Bad Days. I've learned that Blessings are everywhere and everyone -  you just have to reach out in gratitude and embrace them. 

If only others could know those things, too. But without the pain. 

Tuesday, August 6, 2013

The Best Kind of Crazy

They remind me that simple is best. That entertainment doesn't need to be flashy, requiring endless energy - that it can be quiet and still and relaxing.

They pile on to my bed a mountain of books to go with the mountain of kids. We get lost in endless adventures, celebrate victories, travel to far-off lands, make new friends, and see life through others' eyes.

Naptime begins with a whirl of activity. The big bed is prepared to welcome four napping children while six older children decide how to quietly entertain themselves. Bike riding and other outdoor activities win on this gorgeous day. Mama settles the littles into bed, then curls herself up with a cup of coffee and a good book.

Little ones and Mama recharged, giant floor puzzles grace all large, flat surfaces. Hearing that yet more friends are due to arrive, they are cleaned up in a jiffy. 

Children spill out of the house, ready for new adventures. There are pirates on the upper deck, chalk artists down below. "A walk!" one of the youngest exclaims shortly after the arrival of two more friends. Baby tied to Mama's back, ten children venture forth to see what gifts our walk has for us today. We leave two teenagers at home, where they relish the sudden peace and quiet.

Ready to greet us is a dog and her owner. The grown-ups aren't sure who is more exited to see whom, as the dog can barely control her excitement, nor choose which of the horde of children to lick next. On we go, down the street, all of us on foot. The littles run ahead and are reminded of the rules: we don't run toward the busy street, but on the way back, may run home toward the dead end. We say hi to neighbors, several confused as to how there seem to be more and more children each day. We admire flowers of every color and the bees and butterflies visiting them. One of the littles discovers a tick-tock-croc in a garden. Most of the children jump and turn when Mama exclaims, "SKUNK!" only to discover a painted wooden skunk in a neighbor's yard. 

A Peter Pan-esque refrain of "We're Following the Leader" starts and the kids take turns being the Leader. Nine kids marching, singing, leaping, twirling, all in line, no arguing, no me-nexts. Quite miraculous, that. 

"Halt!" exclaims Mama. All stop in their tracks. "Now run home!"

All but the hand-holders gleefully run for the quiet end of the street. 

A game involving a ball and teams is going by the time Mama with baby on her back and the hand-holders arrive a minute later. When the first of the parents' cars pulls up, there is great disappointment in the ranks, as this signals the end of this Very Fun Day. 

Sitting down to dinner with only her five children, Mama sighs. "Today was the best kind of crazy." All agree. "And the quietest crazy we've had in a while." 

"That won't ever happen again, you know." says a Very Wise Child. 

"It might," replies a happy yet exhausted Mama, "although I'm not planning on attempting it again any time soon."

Thursday, August 1, 2013

We Walk

We walk. Or skate, bike, or scoot. 

Every day - ok, almost every day - even if I'm feeling horrible, we go. It's the time of day the kids enjoy most. Some days there are only three or four of us, others there are nine or ten or anywhere in between. We don't go far - just to the end of the street and back, sometimes it takes ten minutes. Sometimes two hours. It depends on what we find along the way. Storm drains are a huge attraction for the little ones, as are sprinklers. The kids are always thankful when the neighbors are watering their lawns when we walk, if the sprinklers are close enough to the road or sidewalk. 

On our walk, we check up on a robin's nest. We visit one neighbor's turtles, ducks, frogs, and other creatures or the statue variety. We walk, we run, we race, we see how fast we can go, then how slowly. We celebrate the rain. We let our imaginations soar in the clouds. We hope for rainbows. 

We come upon wildlife - a Cooper's Hawk soaring overhead to perch in the trees behind our house, a baby bird that had fallen out of its nest and didn't survive, worms, salamanders, chipmunks, squirrels, ants carrying impossibly big things, a huge beetle that's just a bit too scary to cause anyone to want to try to bring it back home to identify. Then there are mushrooms, flowers, sticks,worms, butterflies, and leaves that require copious attention. 

Stories are found in every crack and crevice of our journey. Stories about where the white splatters going down the center of the road might have come from; about the neighborhood cats who may be long-lost relatives to our cats; about the mourning doves who call to us from invisibility; and the dogs that bark at us from various houses and yards. 

We all return home refreshed, energized, grateful for each other, for the world around us. That our walk is so wonder-filled is not because our street is different than any other street, it's because we open our eyes, hearts, and imaginations to the magic around us.