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!

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

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.

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 Committee, Samaritan'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...

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/ )

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?