Tuesday, December 27, 2011

Looking forward...

2011 has been a difficult year for me. My energy levels were low and pain levels high when the year started. My left ankle froze in February, which started what I would learn was a huge psoriatic arthritis flare. Through the process of getting diagnosed with PsA, I learned I also have celiac disease and other health issues. Then came the canes, then the wheelchair, as my health plummeted. I learned a lot about myself and those around me in the process - some good, some sad. I lost much, but gained even more. 


As I look forward to 2012, I find myself actually looking forward to 2012. Enbrel and being gluten-free will hopefully help me to feel more human. My new sense of self, perception of what's really important, regained spiritual center, and determination to maintain balance in my life will hopefully serve me well. 


Not one for making resolutions, instead, I make affirmations for the new year...



I will continue to simplify my house and my life, concentrating on what's really important and getting rid of the rest.


I will nurture the relationships in my life, as over the past year my increasing illness seems to have robbed me of the emotional energy necessary to maintain close relationships with those I care dearly about. 


I will nurture myself and work toward health. I will take Enbrel weekly. I will balance activity and stillness. I will revise my diet yet again and move towards a diet free from anything that may harm my body. 


I will work with the caretakers of Mindful Village to help it grow to meet the needs of more people and families and to become a 501c3 organization at last.


I will find a daily rhythm that works well for my family and help to maintain it...including homeschooling, housework, free/nap time, outside activities, family time ... 


I will find time daily to center myself through meditation and prayer and will grow spiritually trough attending weekly worship, Tuesday Night Sunday School, and Coffee and Conversation at OSLC


I will say yes much more than I say no. I will give much more than I will take. I will live in the present moment.  I will accept others for who they are. I will love openly, laugh heartily, and live fully. 


I wish you all a blessed 2012!



Monday, December 26, 2011

Dearest Body,

I would be eternally grateful if you would cooperate a bit with me. It really burns me up that I'm having injection site reactions two weeks after the fact. The foot pain is really getting on my nerves. And please kindly remove the knife from between my shoulder blades at your earliest convenience, as the stabbing pain is impeding my movement. 

This has become especially important not because I'm very much far behind on housework, but because the eldest of my children have just purchased a Wii, and Wii bowling is right up my alley.

Warmest regards,
Nym
(who apologizes for this painfully punny post)

Tuesday, December 20, 2011

Invisibility Cloak



Psoriatic arthritis, hypothyroidism, anklylosing spondylitis, celiac disease, depression … none of these have physical manifestations readily recognizable to most passersby. I walk -- or wheel - hand in hand with them every day.

"But you seem happy enough…"

"But you don’t look sick…"

"But you don’t act like you’re in pain…"

Yes, I seem/look/act happy/healthy/fine, but looks can be deceiving. For example – can you tell me how many tattoos I have just by looking at me on any given day? (Some people would be shocked to know I have any!) Just because you can’t see them, it doesn’t mean that they’re not there.

I’m not a person who moans and complains about my ailments. I may make a general announcement to those in my household that I’m feeling ill, having a crappy day, or just can’t deal with ANYTHING today, but I’m not going to mope about all day or wince every time my foot hits the floor. That would just be too depressing to me and those around me.

A complete stranger yelled at me today for parking in a handicapped parking space, even though my placard was in my window and I emerged from the van using two canes. Apparently I was “taking up a space that could be used by someone who really needs it” and was one of “those people who abuse the system” because I don’t look sick. Apparently people with chronic pain should never act cheerful and people with chronic illness should be disfigured in such a way that our disability is readily seen.

What’s a person to do in this situation?

I could have gotten angry back. But I didn’t.

I could have ignored the person and pressed on. But I didn’t.

I could have made a snarky comment…

But what I did do was smile. I genuinely thanked the person for their concern for people such as myself who have a real need to park in a handicapped space. I explained that I did have a need to park there, as even though I may appear healthy enough, the amount of pain I’m in due to severe arthritis necessitates walking as little as possible today.

And then I asked the person when his baby was due and watched his jaw hit the pavement as I pointed to the sign in at the head of the parking space his pick up truck was in and walked away. He had parked in an “Expectant Mother's Parking” space, and was alone. He sure didn’t LOOK pregnant … but I suppose I could be wrong… I wouldn't want to judge by appearances after all.



So much for avoiding the snark.

Wednesday, December 14, 2011

Prepare Ye

Advent is a time of waiting. For most of my adult life, it meant waiting in the checkout line of store after store as I gathered treasures of all shapes and sizes for my loved ones, maxing out my credit cards in the process. Waiting for the timer to beep indicating it was time to remove yet another batch of cookies from the oven topped my list as well. Mostly I waited for the "Christmas Spirit" to fill me like it did when I was a child.


Nowadays Advent is much more simple. Gone are the credit cards. Gone are the expectations of an array of cookies whose leftovers would last through Valentine's Day. Gone is the feeling of need to give lots of stuff to lots of people, whether they want it or not. 


Each morning we move Mary and Joseph closer to Bethlehem on our Advent Calendar. We listen to Christmas hymns with some holiday tunes mixed in as we move about our day. We do kind deeds for others and plunk those blessings in the form of coins into our Angel Jar in preparation for Christmas Day. 


We act as "Christmas Angles"  for the member of our family whose name we pulled from the hat on Thanksgiving night. We prepare a surprise. We plot, plan and shop (only $5!). We tinker, create and wrap. We are reminded how good it feels to prepare a gift from the heart. 


On Christmas Eve we gather with family and friends for good food and wonderful conversation. We go to worship to praise God for his Gift to us and to share the joy of the Birth with others. After dinner, we gather together to exchange our Christmas Angel gifts and share in the joy of gifts that feed our souls.
Alia's Christmas Angel last year was Alexander, who made her a cloak. 


On Christmas Day we get to count the money in our Angel Jar and pay our good deeds  forward through a donation to a charitable organization or two. After all, it's Jesus' birthday, and everything we have, we have by the grace of God, who gave us the greatest Gift - the Gift of a father's love for all his children. The Gift we should pass on to the rest of God's children, especially those most in need.


That Christmas Spirit I mentioned before?  It wasn't at the mall or on the radio.  I never found it amongst the boxes and bows. It wasn't in the colored sugars or even in the giving of things to family and friends. It turns out it was in my heart the entire time - not in the giving to others, but the loving of others and doing for others, as God loves and does for us.  'Truly, I say to you, as you did it to one of the least of these my brothers and sisters,  you did it to me.' Matthew 25:40


This Christmas, I encourage you to give a gift of Love. Do something nice for someone. In the mood to shop? Support a local craftsperson or artist ... or buy and donate food to a food pantry ... or browse these catalogs for some wonderful ways to improve people's lives: Lutheran World Relief , Mennonite Central CommitteeSamaritan's Purse , Camp Calumet, or Harvest of Hope. And if you want to get me something for Christmas, world peace would be a good start...

Monday, December 12, 2011

Spoons...I Needs Them

It seems that my supply of spoons is dwindling. At this time last year, I had a good number of spoons when I started each day. When my flare started in February, half my spoons went down the drain. As the months have progressed, the number of spoons within my grasp on any given day has dramatically decreased. The cold weather has swallowed up yet more spoons, as my joints fight to stay warm enough to function. My recent celiac disease diagnosis and the changes going gluten-free in a gluten-lovers' household has brought on, not to mention Christmas preparations and Advent activities, has left me befuddled as to how I make it through some days without landing myself spoons debtor's prison.

But this is the month of hope. Hope that going gluten-free will improve my health. Hope that starting Enbrel (December 9) will slow the damage to my joints and free me of some PsA-related pain. Hope that the New Year will bring with it more spoons and a better quality of life. 

In the meantime, I will continue to ration my spoons as best as I can and enjoy my life to its fullest, including naps! 

(What are these spoons of which I speak? All hail Christine Miserandino of ButYouDon'tLookSick.com  http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ )

Thursday, December 1, 2011

Comfort and Joy

'Tis the season when my mind wanders to things I might purchase with any money I might receive as a Christmas gift. When I get past thoughts of paying bills and medical expenses, I let myself dream of lovely things. Things that will lift my spirit and feed my soul. Things that will bring me Comfort and Joy. The top things on my list?




- A nice, thick memory foam mattress topper 
- And THIS set of canes

Oh, and let's not forget the purple hair to go with the canes.

Along with completely unreasonable things like a hot tub, weekly massage and chiropractic adjustment, my very own bathroom with a huge handicapped accessible tub...and someone to deliver yummy gluten-free meals to me weekly. 

After mulling all this over, I realize that exactly what I want for Christmas is COMFORT and JOY. The Comfort of a good night's sleep... the comfort of relief from pain. And the Joy of wicked cool canes that don't kill my hands and totally rad hair to go with them. Who could ask for more?

Wednesday, November 23, 2011

Thanks Giving

This Thanksgiving Eve, I sit, surrounded by sleeping children - most of whom are mine - anticipating the huge surprise that is just hours away. I'm stressed. I'm in pain. I did waaaay too much today. But I'm thankful. Thankful my body held up today. Thankful that children went to bed so nicely tonight. Thankful that, once Miss M is picked up, I'm tired enough that I should hopefully fall to sleep quickly after a relaxing shower to calm my muscles and joints. I'm thankful that our van is in working order, everything that needs to be packed has been packed (I hope!), and that we have loving family awaiting our arrival in PA for Thanksgiving ... a trip our kids will find out about (SURPRISE!) at around 1AM when we force them out of their nice warm beds into the cold, cold night to hopefully sleep peacefully most of the 8-10 hour drive. 


Mostly, I'm thankful for friends who helped me through the day, encouraging me to keep my flagging spirits up as my gratitude for the many blessings of my day got buried under an avalanche of unexpected problems and emotions. Having such supportive, understanding people in my life is one of life's greatest blessings.


I wish everyone at blessed Thanksgiving weekend!

Friday, November 18, 2011

Flare for the Dramatic

For me, there are two different types of PsA flares. There’s the big huge one I’ve been in for nearly a year now, and there are the intense flares within the big flare, like the one I’m experiencing now, that make life just that much more fric … errr….unbea…ummm… interesting.

As I type, I’m sitting here under my big huge heavy blanket trying to keep my joints warm, entertain small children and not give in to cranky demands of a certain nap-resistant child. Thank goodness my computer, as well as my latte, are nice and warm. Not to be overdramatic, but it’s flippin’ cold in here! According to the weather channel, it’s 42 degrees outside, which means it’s roughly 43 degrees in here. Why, you ask, do I choose to sit in the cold when I’m in the middle of a flare? Because here in the non-heated part of the warehouse that houses our homeschool co-op is where the toys and books and fun stuff are. And there, on the other side of the door, in the heated theater, is where two of my children are rehearsing. And besides, the cozy warm cafĂ© is too small for general running around and too close to the play rehearsal that’s underway – and I am not, I repeat NOT, allowed to know anything that’s going on in the play until the actual performance tomorrow night on threat of beheading. There are knights with real swords in this play, so I’m not going to mess with them.  Besides, the kids are having a blast, these Hoteeze pads are working wonderfully, and I get to rest for a few hours, which never happens. Well, rest my body, anyway. Apparently this is the day of 1,000 questions and we’re only up to number 327, so I must go now and explain the difference between Marmite and marmosets and other important things.

Saturday, November 12, 2011

Dear Self,

Please slow down.
Please stop doing so much.
Please be gentle with yourself.
Have fun with the kids.
Help the kids have fun with the housework.
Delegate.

Take time out every day for YOU.
Treat yourself with kindness.
Lower your expectations.
Accept that messy is the new clean.
Enjoy life, don't struggle through it.


Thank you.
Me

Thursday, November 3, 2011

Rannygahoots Guide to SPORKS

After four days of strenuous research, Rannygahoots Laboratories has put together the following guide on Surviving Power Outages Relatively Kinda Sanely:

Step 1: LIGHT
In case of emergency, you should always have flashlights with batteries, candles, and hundreds of glow sticks on hand. Most important are the glow sticks, preferably the kind you can bend into bracelets, as these provide not only an amazing amount of light, but entertainment value as well. See before and after photos below...


Step B: WARMTH
Body heat is a ready source of warmth. Gather vast quantities of blankets, put some mattresses together on the floor, and share your body heat. Refrain from saying whiny things like, "He's touching me!" or "She's too close to me!" because closeness is essential to the conduction of body heat and besides, it drives your mother up the wall and it isn't very warm up the wall. 

Step 3: SAFETY
Your house is usually a safe haven, but should branches and trees decide to fall on it, you might need to evacuate. Then safety takes on a whole new meaning. Have food, water, and blankets in the vehicle with you. Drive slowly, but not so slowly you lose traction on hills. Dodge things like power lines and fallen trees whilst trying not to slide around on the road and/or into another vehicle. Try not to say words you don't want the kids in your vehicle to repeat. If your trip to the local shelter fails, find somewhere with electricity and a bathroom, preferably a 24 hour restaurant with sympathetic waitstaff. If you have children with you, plan on 172 trips to the bathroom in a 2 hour period. When you find permanent shelter, realize that being safe is more important than having power or being warm and be thankful for the darkness and the cold, as it comes with a roof over your head and a lack of large falling objects. 

Step d: FOOD
Don't forget to eat, even at inappropriate hours if it gets you a warm place to be for a couple hours. Hot food is better than cold food, but any food will do. Especially chocolate. 

Step 5: FUN
What's a power outage without a little fun. Remember the glow sticks? Try making animal shapes. 

Play games - you know, like board games or card games. If you're not familiar with such things, they are types of games that don't require batteries or electricity, but can be incredibly amusing. 


Make shadow puppets. Slide down stairs in your footie pajamas (which are wonderful to wear when it's cold in the house). 

Read books. Write out your holiday wish list. Lock your parent out of the house.

Or give your camera to a 3-6 year old and see if you can identify what they took pictures of ... any guesses on these...?





Step *: PRAY
Pray ceaselessly and humbly. Don't pray for your own power to come on, as that would be selfish. Instead pray for your neighbors' power to return. 

Step Zzz: SLEEP
After all, when you're asleep, you don't notice the cold!  Just be wary of the aforementioned camera-toting 3-year-old when deciding on your napping spot.




WHEN ALL ELSE FAILS: Great amounts of heat are created by freaking out, so go ahead and get it over with. You may not feel better afterwards, but you'll be a little warmer.


Wednesday, November 2, 2011

Alive! and, well....

It's been a harrowing four days. Four days? It's only been FOUR DAYS???
*takes deep breath and starts again*
It's been a harrowing four days. It started with snow in October. A LOT of snow. Over a FOOT of snow. In OCTOBER. Really. See? (before)


Do you know what happens when you get over a foot of snow on trees that still have leaves? They break. Breaking trees are Loud. Trees and branches crashing to the ground are loud. Trees and branches falling on your house are LOUD and cause you to evacuate. At midnight. In the snow. Here's how events unrolled from there...
(photo: during)
12:46AM: decide we cannot make it up the hill to the nearest shelter after dodging trees and downed power lines (the shelter is 4 minutes from our house on a good day) and go back down the hill
1:13AM: arrive at gas station that has power, fill tank, buy water, call every hotel and motel in 40 mile radius to find that there is not a single room to be had
1:33AM: decide to see if truck stop a few exits down the highway is open, dodge more downed trees (on the highway!!!), power lines, stuck vehicles, etc.
1:52AM: arrive at truck stop. Thank God that it's open. Use bathroom. Order food. Take various combinations of kids to the bathroom 172 times over the next 2 hours and refuse to buy them any of the requested items from the store that's in between the restaurant and the bathroom

4:00AM: decide everyone's too tired and needs to sleep and go back to van, warm up van, and everyone sleeps except Mama, who keeps the van warm and listens to the news on the radio
6:00AM: Mama hears announcement that highways have mostly been cleared. Wake Daddy and decide to try to make it to Gramma and Papa's house.
6:38AM: Arrive in Naugatuck, drive through downtown to see if Dunkin Donuts is open, rejoice in the fact that it is, buy a "box 'o' joe" and brave the hill to Gramma and Papa's house
6: 52AM: Arrive at Gramma and Papa's house.

I then put myself to bed and didn't wake up until 1PM. We were very blessed to stay with my parents until this morning, when we decided it was time to return home - and when, seemingly miraculously, our house regained POWER! Homeowner's insurance will cover the damage to our house and the removal of the tree leaning on our house and the pile of large branches leaning on our house...if we can find a contractor available to do such things.
Above: All that was ON our house during the storm
Below: The view out our back door - the tree in the middle of the photo 
is split at the base and is leaning on our house


This adventure has brought many blessings and a great sense of gratitude. Gratitude that we made it safely through the scariest night of my adult life; that our house wasn't damaged too badly; that my parents welcomed a horde of rannygahoots into their house and took wonderful care of us all even though they didn't have power; gratitude for gas-powered hot water heaters and stove-tops; for flashlights, candles and the hundreds of glowsticks in my possession at the time of the storm; and for the warmth that comes from knowing you have a safe, warm(ish) place to rest your head and your heart.

Tuesday, October 25, 2011

The Answer to the Ultimate Question of Life, the Universe, and Homeschooling...

At the grocery store, my three-year-old struck up a conversation with a gentleman who was looking at mangoes. He seemed to be evaluating the mangoes for quite some time, so she asked him if he needed help picking out a good mango. They proceeded to have a conversation about mangoes: how to test for ripeness; that you can eat the mango skin and how good it is for you; that organic mangoes are better than "ones with poison on them"  - the three-year-old teaching the 40-something-year-old. Alia then made recipe suggestions, "Auntie Jen makes black bean and mango and avocado all together and it tastes really good! Or you can just slice them with the mango slicer and eat them, but don't put too many in a bowl because you can't stop eating mango 'cause I ate a whole mango without sharing."

The gentleman then asked me how she got so smart. Before I could answer, Alia interjected, "Excuse me. It's because I eat lots of foods that are good for my body and my brain and I'm homeschooled and I like skellas and skeletons."  As usually happens, he then asked me the standard homeschooling questions: "Do you really homeschool? People still do that? Is it legal? They have to take the standardized tests, right? How to you evaluate their progress? What about college?" And then there it was - THE question: "But what about socialization?" 

My response? "Well, she's only three, so she has a lot of work to do on her social skills, but I don't think she's doing too bad of a job, is she?" 

Before he could get the pensive look off his face and respond, Alia asked if we could go see the lobsters. I said yes and turned to say goodbye to the gentleman and Alia said, "It was nice talking with you! I'm Alia ... I'm sorry, I didn't get your name...?" 

Fumbling for words, John managed to introduce himself before saying goodbye and getting back to his shopping. Alia had an equally nice chat with the lobsters, and the lady with the naturally flavored seltzer water samples, and the elderly woman in the motorized scooter whose day was apparently made by Alia's comment, "Your wheels are even cooler than my Mama's!" 

Socialization? I don't think that's a problem... Alia drinking half of my pumpkin latte while we were shopping - now there's a problem!

Wednesday, October 19, 2011

Arthritis Awareness

How aware are you of the second toe on your left foot? Today, I’m incredibly aware of mine. What about the exact location of your sacroiliac joint also on the left side, the place your Achilles tendon meets your heel on your right foot or the fingertips on just 3 fingers on your right hand and one on your left? Sporadic Artie won’t let me forget about mine today. I’ve heard of Arthritis Awareness, but this arthritic awareness I can do without. 

Monday, October 10, 2011

Dear Ziggy,

Thank you for all the help you've been over the past week, it's been wonderful. You've allowed me to enjoy time with my family and kept me moving when I was feeling fatigued. Thanks also for giving the kids rides to and from the store. They think you’re really cool. It was also interesting to see things from a new perspective - at 5’3” I thought I was fairly short, but from your point of view, 5’3” is rather tall!

I don’t mean to be critical, but at times you drove me a bit crazy, randomly pulling me to the left as I was trying to shop. That must be how you got your nickname – Ziggy.  And if you could keep still while I’m driving, I’d appreciate it. I feel like I may have to tie you down the next time you’re in the car with me because your constant movement is too distracting.

But all in all, Ziggy, you were a godsend this week. It is very comforting knowing you will be there for me whenever I need you.

    O
 ~]---
  (_)  \_ 

Sunday, October 9, 2011

Alexanderzacharyhaleycorenalia

Artistic Loving Energetic XII-year-old Adolescent Needing Downtime for Endless Reading


Zany Artistic Caring Honest Astute Responsible Youth


Hippophile Affectionate Loving Enthusiastic Youngster


Curious Observer Radiantly Excavating Neoliths


Agile Loquacious Intelligent Artist

Saturday, October 1, 2011

Most precious...

There is perhaps nothing more precious than the looks of pure joy on my kids' and my husband's face when holding baby R this evening. Except maybe being blissed out myself by the smiles and snuggles R gave me this evening during the wonderful birth stories circle with a couple of amazing mamas. An evening doesn't get any better than that!








And no, I'm not having any more babies. 

Thursday, September 29, 2011

Mouth for Brains

My body is telling me that it isn’t capable of sleeping in this chair, so I talked to my body and told it that I AM going to sleep in this chair because bodies need to learn how to cooperate with their owners even though your body doesn’t cooperate with you no matter how much you talk to it. Is Daddy on his way home from work now? Isn’t it about time he gets himself home from work? Do you think Lizzie is holding Rowen and Rowen is nursing? Or is he fussing or sleeping or is Baba holding him? Do we have oranges?  Was that a hole puncher you were using this morning? What were you using it for? Why am I not sleeping? Am I too busy talking? Does my mouth have a mind of its own? If it did would its brain be in my tongue or my teeth? Or maybe a tendril came down from my brain and grew a second brain and it implanted in my cheek and is freaking my mouth out that’s why I can’t stop talking. Remember my penny from the other day? It was a nice penny, a forever penny, a lovely penny that doesn't wake up little girls like the fan. Can you turn off the fan? It keeps talking to me and waking me up. Like buses. Talking to me. Not waking me up. Buses don't wake me up. They do tell funny stories. Like my Moonbear. I wonder if Moonbear will visit me tonight. I'll have to be sleeping for that to happen. Maybe if I close my eyes my mouth will get the right idea. Goodnight, Mama."

"Goodnight, Alia."

Saturday, September 24, 2011

But Wait ... There's More!

Get Psoriatic Arthritis now and we'll send you Ankylosing Spondylitis ABSOLUTELY FREE! Act now and you'll receive our free introductory offer! We'll send you a starter kit complete with spiral bound, tabbed booklet and totally redundant informational dvd. But that's not all! We'll throw in a dry erase calendar magnet and marker at no additional charge! But wait - there's more! If you call now, we'll send you a travel cooler, freezer pack and travel sharps container to try risk free! If you call within the next five minutes, we'll include an additional FULL SIZE sharps container absolutely free. That's Psoriatic Arthritis, Ankylosing Spondylitis, a starter kit, calendar magnet, marker, travel cooler, freezer pack and BOTH SIZES of sharps container for one low, low price. Don't wait! This is a limited time offer. Call now and make just 900 easy payments of $19.99. Sorry, no COD's. 

Tuesday, September 20, 2011

Moondragon

(posting this a few days late - we were overrun by pirates on his actual birthday)

To my Moondragon on his sixth birthday,

There is no possible way you can be six years old. It couldn't have been that long ago that your older siblings were talking to the Moonbaby in my belly. Wasn’t it just last year you were my baby-just-born, all 10lbs 14oz slipping peacefully into the world surrounded by your family? It must have been just last month that you were my cuddly 3-year-old, never far from my side, always snuggled against me wherever I sat, no? You couldn’t possibly now be reading and writing and having long conversations with people about paleontology and space exploration and how you’re going to combine the two one day to explore ancient creatures on distant planets. Nor could you be sought after by 2 three-year-old girls for your wisdom and knowledge and wonderful storytelling abilities. Looking into your still-round face, I can see that infant, that 3-year-old , but there is a maturity there that wasn’t there before. Your smile warms my heart in just the same way it did when you smiled for the first time, and the peace that radiates from your eyes will forever ground and comfort me.

You have taught me much, my Moondragon. You are the fourth child, the third boy, but in so many ways the first. The first baby whose sex we did not find out until birth; the first to be born at home; the first peaceful, painless, relaxing labor and birth. The first to have a totally laid-back personality and not care much about doing what anyone else was doing - including not speaking much until age 3 (but boy have you made up for it since!).  Through these firsts, you taught m the absolute beauty of labor and birth. You taught me to relax, and breathe, and let things happen in their own time. You helped me to let go of (at least some of) that sense of urgency that seems to be ever-present in my thoughts. You taught me the joy in a word, in a touch, in a breath, in a color. You taught me to embrace the moments between thinking and acting, to slow down and listen –really listen- to a person or the wind or the crickets or the silence.

You have stepped into Six with confidence, ready for the challenges and opportunities you’re sure Six will present to you. I wish you well on your journey, and am overjoyed that I get to go along with you! 

Sunday, September 11, 2011

The Next Step

I’ve decided that we can be friends, perhaps even more. At first, I was wary of any close relationship – and certainly of a long-term relationship, but I think it’s time to make the commitment. As with any relationship, I don’t know if it will last, but I think the time is right to jump in with both feet. Well, not jump, exactly.  Jumping is too painful, leaves me too open to hurt and misery. Maybe “ease in” would be a better thing to do. We’ve already been around town together. You’ve gotten me through some rough patches in my life and are always there for me when I need you. I helped you when you were run-down and bought you things to help you be a better you. Our date the other night went well, even though it got off to a rocky start. It’s still early in our relationship and things are a bit awkward at the moment, but I’m sure they’ll improve with time. This really could work out and I’m starting to get a bit excited about it. I think I’m ready for the next step in our relationship. It’s time to give you a name – even if people think it’s silly for me to name my wheelchair.

Wednesday, September 7, 2011

A Walk with Grampy

Plink … plunk…clink…
Coins fall from the sky as we walk.
Running to pick them up, 
I glance over my shoulder at Grampy - 
Hands in pockets
Taking in the displays in the store windows.
Why doesn’t he notice the coins raining on us?
Dink … tink … Plink…
Picking up a dime and a nickel,
I quickly count the change in my hand
Hoping the “rain” will continue.
Hoping to have enough
For a small something
By the time we reach the toy store.
Whistle … Plink … tink…
Grampy’s grin wide
As we show him our bounty
His look confused when we ask
“where is it falling from?”
“The sky,
I would think!”
Clink … clink … plunk…
My sister runs ahead,
A quarter speeding toward the parking lot.
We’re almost there -
It’s just ahead!
Toys peer out the windows,
Inviting us in
To spend our newfound fortune.

Friday, September 2, 2011

Life Partner


I never would have guessed all those years ago that he would have such a huge impact on my life. In my wildest dreams, I in no way imagined that he’d still be with me now, and without a doubt will be with me until I die. There were long periods of time when he was very distant and I thought he might leave for good, but he stuck with me through it all. It seems no matter how hard I try, I can’t get rid of him.

And boy do I wish he’d just leave! What a pain he’s been all these years! Just imagine how I feel, living with someone so inconsiderate of my needs and my wants. He keeps me up at night – and I’m so sleepy during the day! He limits my movements – there are days when he doesn’t even let me leave the house.  The pain he inflicts on me has put me in a wheelchair several times.

The agony of knowing my life with him will never end and things could just get worse is overwhelming at times.  I fight not only with him, but with the depression and anxiety he causes.

Why do I let him do these things to me, you ask? Don’t you see I have no choice.  I’ve looked everywhere for a way out. I’ve even considered taking drugs to escape from him in a way, but those would be more harmful than the good they could do. I could move away from here to a better climate, but then I’d be away from my family and support system. My only hope is that he’ll leave of his own accord, which isn’t very likely.

I am doing things to help my situation, though. I’m getting myself as healthy as possible so I can fight back. I’m trying my best to think positively about my life every day and to find joy in what could be a life of misery and pain. I’m changing my perception of our relationship to one of respect and opportunity. I’m making positive choices in my life that will hopefully have an effect on his treatment of me.

I’m changing my perspective. Instead of pushing him away, I’m getting to know him better. I’m learning to enjoy the slower pace of life and the bliss that comes with taking the time to appreciate moments of beauty and wonder throughout my days as opposed to struggling against the limitations he has put upon me. I am finding balance rather than battling pain. I’m seeking peace with the uncertainty our relationship brings to my life.

I didn’t enter into my relationship with Psoriatic Arthritis (or Sporadic Artie, as my 3-year-old referred to “him” the other day) knowingly, but since he is in my life for good, I’m going to learn to live as well as I can with this unexpected life partner.

Tuesday, August 30, 2011

Goodnight Irene

Irene came for a visit, dumping 9.5 inches in a matter of hours here in Bristol and causing major flooding. My family spent our day without power playing games and eating foods like potato chips and store-bought cookies that we normally wouldn’t have in the house. I even snuck in a nap. We listened to programs on NPR, danced to music on my iPod, piled together to read books, and watched the trees dancing in the wind. Keeping in touch with friends and family via cell phone, we heard news of the “outside world” from those who still had internet access.

When the rain stopped, the sun came out, and all that was left to worry about was the wind, the kids dashed out of the house to play while Jim and I surveyed the yard and got out the grill to make dinner. The river of water coming down the hill to the front of our house made for fun splashing and dam-building. Grilled hamburgers, hot dogs and corn-on-the-cob were enjoyed by all. When the power came on just before bedtime, shouts of joy wafted through the window from houses on our street. 



We’re still without internet (I’m posting this courtesy of Panera wi-fi), but other than that, all is well. Except that the kids are asking when the next hurricane will be, as Irene was just so much fun! 

Thursday, August 25, 2011

How To...


I gave my kids an “info scavenger hunt” to do as part of their homeschooling. I was expecting it to take ½ hour at most. Perhaps I was a bit off … by an entire afternoon. But we did learn something - How To Make a Simple Assignment Take All Day:

-          Argue over who gets to use the computer first.
-          Argue that you can’t write because you don’t have a surface on which to write.
-          Claim that the stool suggested as a writing surface won’t work because it “has lines.”
-          Sigh when it’s suggested you place a book on the stool.
-          Argue with your sibling over using one type of paper instead of another.
-          Get side-tracked when one person needs to go to the bathroom and all end up in a different room watching a movie that you’re not supposed to be watching.
-          Claim to not know what to write after it’s been explained several times that you need to write five facts for each topic: Who, What, Where, When, and Why might it be important.
-          Fail to realize that half the info you need is already written down for you on the cards provided.
-          Get side-tracked when someone needs a drink of water and end up playing playdough with your little sister.
-          Start a long monologue about how your pen is out of ink, whose fault it is that you have a defective pen, etc. only to be reminded that there’s a container brimming with pens right in front of you.
-          Volunteer to get the mail, as a magazine that’s due to arrive any day may contain info pertinent to the project. Return 40 minutes later without the mail. Head back out the door to get the mail, only to be stopped by your mother who sends a different child out to get the mail with strict orders that said child returns within 90 seconds or risks the “Wrath of Mom.”
-          Spend 10 straight minutes at the computer gathering info only to find out that you just did your brother’s assignment.
-          Fall out of the computer chair and injure your eye. Writhe on the floor in overdramatic agony while your sibling gets you a cold pack for your eye. Apply cold pack for 3 seconds. Yell at the sibling who is now in the computer chair that it’s your turn.
-          Claim to not be able to find information on your subject, and then when asked what might have happened in that year at that location, proceed to spend 3 minutes telling your mother more info than was necessary to find. Look aghast when your mother tells you that if you know the answer, you don’t have to find the answer, you just have to write it down.
-          Remind your mother that it’s dinner time and volunteer to help with dinner, only to find out that your mother refuses to feed you until you’ve completed the 30 minute/all day project.
-          Spend the next 6 minutes completing the project and then comment about how easy it was.
-          Dodge the things your mother is now throwing in your general direction.

There you have it. And since the kids lost the papers on which they wrote the info sometime during dinner, they may just have to do it all over again tomorrow.

Sunday, August 21, 2011

Welcoming Silence

In a house with five children, it’s not often that I can find a moment or two of silence.

Or privacy, apparently, as the child reading over my shoulder just pointed out that we more often than not have anywhere from 6-10 kids in our house.

But this morning I found silence! Who knew that it could exist in such quantity here? I sat and sat and not one child asked me for something, whined about something a sibling did to them or knocked someone or something over. I even dared to go to the bathroom, sure that within seconds a child would open the door and peer in to make sure I continued my record-setting run of not being able to pee without an audience. And guess what? No interruptions!

I can sense your astonishment and perhaps a hint of disbelief. And to answer the question on the tip of your tongue – yes, all of my children were home at the time.

How did I accomplish such a feat? Did the stars and planets align in such a way that complete peace and harmony was brought upon my household? Was duct tape involved? Alas, it was only because I was up before the sun and therefore before my children, who usually get up with the sun. For the longest time I just sat, soaking in the silence, afraid to move and shatter the beauty that is being able to hear your own thoughts. I meditated a while, sending good energy to a friend who was probably at the same time enjoying the peace and quiet in her house, but in a different way.

And then it happened. Music blared from my cell phone – the greatest interruption ever. The voice on the other end asked if I could come now, and off I went, waking up the big kids to let them know I was leaving and greeting the littles as they excitedly asked if they could come along for the ride. Big Sister Day had arrived. It was time to pick up Sonic (or so she insists on being called today) so her Mommy could labor on in peace and welcome Baby Brother into the world.

The ride to pick up Big Sister was filled with excited chatter. The ride home was strangely silent. As we approached home I finally broke the silence, asking why everyone was so quiet (two three-year-olds and a five-year-old usually don’t last 20 minutes without talking). Big Sister answered, “I’m too excited to talk. I think I’m growing bigger into a Big Sister!” 

Our stop at the grocery store was anything but silent as the kids tore down the aisles in search of cupcake supplies and had a raucous conversation about the merits of each balloon and whom should get which floating orb. The Big Sister Breakfast Feast back home proved quite boisterous as well.

We are now post silly-song-sing-a-long dance party and silence has once again overtaken the house as the children have built and nestled themselves into a fort with copious books, pads and pencils. I shall cherish this moment of stillness and use it to pray for my laboring friend, that she may find that silent place in her soul where confidence in herself and trust in her body live – and that she may draw from that place the power to birth her baby as she has envisioned for so long.

Little girl giggles are tickling my eardrums, signaling that it’s time to move on to cupcake baking and crockpot dinner making. Farewell, silence. May we meet again. Soon.


Postscript: Baby Brother was born at home at 10:18AM. Warrior Princess Mama and baby are doing well. 

Monday, August 15, 2011

What a Pain!


You know you live with chronic pain when …
  • Your child asks you why your foot is bleeding and you discover you’ve stepped on a piece of glass – and you’d assumed it was just your PsA acting up.
  • You view “tramadol” as both a swear word and a blessing.
  • You get excited to test out your new wheels – which come in the form of a wheelchair.
  •  You find yourself lusting after items in the Fashionable Canes catalog.
  • The doctor asks you how much pain you’re in and you reply, “relative to what?”
  •  You see shaving your legs as a major accomplishment.
  •  Your 92 year old grandmother moves faster than you – and uses one cane to your two.
  • Getting out of bed counts as your exercise for the day.
  •  You have no idea how to answer when someone asks, "How are you?"
  •  You buy shoes based not only on comfort and support, but on the height of your wooden canes.
  •  You check the weather forecast to see how you might be feeling the next day.