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Showing posts from 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 im…

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)

Invisibility Cloak

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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 s…

Prepare Ye

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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 …

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, …

Comfort and Joy

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'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?

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 …

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 r…

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

Rannygahoots Guide to SPORKS

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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 deci…

Alive! and, well....

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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 areloud. 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 e…

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 an…

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.

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 ~]---   (_)  \_

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

Most precious...

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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.

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&…

But Wait ... There's More!

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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 matu…

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.…

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.

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 t…

Goodnight Irene

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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 wa…

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 …

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…

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.