The Art of Living Well with a Chronic Condition

This is the first post of a new blog series. The posts in this series will include my thoughts on a variety of subjects, all beginning with "The Art of."

Today I want to talk about the Art of Living Well with a Chronic Condition.

To begin, a little disclaimer. I was diagnosed with Ankylosing Spondylitis 3 years ago this month, but have been living with chronic pain since 2005, when I lost a baby and went through a chain of operations. I also spent about half of high school in chronic pain. So while I am a bit of an AS "newbie", I am not new to chronic pain, and have the scars to prove it.

I was very fortunate in that I discovered two bloggers in the years leading up to my AS diagnosis. Two female bloggers living with chronic pain. One was Sara Frankl, who lived an incredibly inspiring life and taught countless people (including me) to Choose Joy. Sara died in 2011 of complications to AS.

The other was NieNie. Stephanie Nielson was severely burned in a private plane crash. She nearly died. She has endured countless operations, skin grafts and more in the years since.

Both showed me that it was possible to Choose Joy no matter your circumstances, and that you could inspire people while doing it.

I determined in the summer of 2010, during a journaling session in a coffee shop, that if Sara and Stephanie could do it, so could I. Regardless of what came my way, I decided I would make as many commitments and recommitments as needed to adopt and maintain an attitude of joy and gratitude.

I encourage you to visit the above mentioned blogs and read some of their stories.

Here are some of my personal tips on living well with a chronic condition:

1.) Decide that no matter what your condition takes from you, you will fight to retain your identity. Do everything you can to ensure that your physical health does not rob you of what makes you unique. Adapt, modify, replace a hobby with a new hobby, but do not let go of your essential self.

2.) Do not give in to bitterness. Yes, you have a chronic condition, and no, it's not fun. Many others do too. Some conditions are more difficult than yours, others less difficult. This is yours. Grieve it, accept it, and then get on with the business of living your best life despite it.

3.) Differentiate your physical self from your mental/emotional self. I think of my body as a house. I live inside that house. AS likes to wreak havoc on my house. Inside the house though, I am unshakeable. I am stable. I am joyful. I am just fine. As Sara Frankl said, "My body is brutal, but I am good."

4.) There will be times when you simply can't be happy. Get angry, but deal with your anger in a healthy way. Don't take it out on those around you. Cry it out, then start again. You will have moments, hours, days and weeks when this 'chronic' reality is not ok. It's okay to acknowledge that.

5.) In order to live with a chronic condition, you will do well to simplify your life. This is a great opportunity to use your boundaries, know your limits, and say "no." Your pain and illness will take time. Scale back in other areas and you will find that you are less stressed. Stress can lead to pain, so don't underestimate the value of limiting the things which will cause you stress.

6.) Make time for the things that feed you. Just as stress will negatively impact you, nurturing yourself will benefit your health. So take a walk, paint, sit at the beach, journal, play music, watch a funny TV show, have dinner with friends. Do what feeds you. If you don't know what those things are, try making a list of your activities and then make a note of how you feel during and after those activities. Writing energizes me. Painting soothes me. The ocean inspires me. Being around people too often or for too long drains me. When you have a better idea of what drains and energizes you, take care with your calendar and schedule things appropriately.

7.) To the best of your ability, take good care of yourself. Stay hydrated, get as much quality sleep as you can, rest when you need to, eat nutritiously, and keep your body moving as you are able. Don't assume that your condition is responsible for every symptom you have. Your choices and lifestyle may be playing a part as well. Do not ignore new or worsening symptoms.

8.) Your abilities may ebb and flow. Learn to go with the flow. When I can walk without aggravating my joints, I gratefully do so. When I can't, I don't. It will be worth your while to see the professionals best suited for your condition and work with them to gain the best understanding you can of both how your disease or illness typically present themselves, and what's currently happening with your particular case. My months in physical therapy were very helpful in learning about my particular mobility, what parts of my body were referring pain where, and what would be helpful and harmful for me, in dealing with mobility and AS. Working with a good rheumatologist, and having appropriate tests done has been incredibly helpful too. I find it's far less stressful and fearful to know what's going on with my body than to worry about it and not know.

9.) Create or maintain a support system. When you are able, be there for others. When you need help, learn to ask for it, and accept it. Severe levels of chronic pain quickly cause a sense of isolation. That sense of being alone can be detrimental to your well-being. Reach out!

10.) Cultivate an attitude of gratitude. No matter how bad things are, there is always good if you look hard enough. Keep a little notebook and try to jot down a few things every day that you are thankful for. Jot down beauty around you, compliments you receive, and inspiring quotes. List things that you have -- shelter, food, clothes. Start broad and basic and you may find your attitude changes quickly. In my experience, gratitude, especially when I name it out loud or write it down, creates joy.

I hope something here helps you when you are struggling with your reality. Life still has a great deal to offer, and you are not alone!

Between Hope and Joy

{Original Art Journaling by Jennifer LeBlanc 2012}

I've been in really rough shape. You know that if you read this blog much. 

A month ago, after a full spine MRI done to evaluate my Ankylosing Spondylitis, I was told that my MRI had shown something concerning. They recommended I have another MRI. If they saw what they thought they saw, they said it was potentially serious and unrelated to AS.

It was sixteen days of waiting and anxiety before the 2nd MRI. It took 90 minutes, and it was difficult. The pain had been at an all time high, and lying on a flat, hard table and holding extremely still for that long was really hard with AS.

I tried to breathe evenly and I prayed. I thought about my girls and my life. I thought about what life might be like with the serious disorder they were trying to rule out or confirm. I thought about how much worse my life could get, and how hard it already is. The pain was bad but I didn't want to blur my images or make another MRI necessary, so I held completely still and bore it.

It was dark outside when my husband and I drove out of the parking garage at the building where I had the test. I knew news would be coming in the next 24 hours -- news that might make me feel extreme gratitude that "all" I have is AS, or news that my life was going to change yet again, and not in a good way.

Throughout the 16 days I told very few people. I didn't want to worry anyone. But it made it difficult to journal or blog or even update my Facebook status. I was holding my breath. My last post was during that time. The fear was so strong.

The day after the MRI, I received two sets of news. One, the serious disorder they thought they saw I do not have. They ruled it out. Just to give you an idea of the fear I was dealing with, one of the potential results of that disorder is paralysis.

Relief.

I also found out I have more issues with my spine than I previously knew. That news was hard for me to process, but two+ weeks later, I'm at peace with it.

A lot has been changing in my life, and I'll post again soon. But for now, I've come out of the dark, and I wanted you to know.

I'm somewhere between hope and joy, and it feels tremendous.

The Gift That Keeps On Giving

I've hit a really bad patch with my chronic illness.

The fatigue is drowning me. The pain is pushing me to my limits. And don't ask me about my ability to think, concentrate or spell. What once was easy is now a marathon of limitation and difficulty.

I limp to bed discouraged. I'm crying. Again. A rotating calendar on my nightstand catches my eye. It's the God in the Moment Inspirational DayBrightener by DaySpring. Its daily quotes are taken from one of my favorite books, One Thousand Gifts by Ann Voskamp.

The quote says:

YES! Not "I'm worried." Not "I'm stressed out."
Not "I'm anxious." Not "I'm too afraid." Hear me say thank you.
Hear me say YES! Watch me live a life of yes. 

A few days later it says this: "God created the world out of nothing, and as long as we are nothing, He can make something out of us." Martin Luther's words hit me right where I am, feeling emptied of all strength and ability. I am weak and He says that in my weakness, His strength is made perfect. How does that work?

I've been wanting to reread Ann's book, but I can't concentrate long enough. DaySpring sends me two things to review and the other, the little gift book of Ann's words and photography, is just right. Beautiful pictures that remind me to breathe. Beautiful words in bite-sized chunks I can handle.

In this very hard time, in a time of waiting and hanging on to hope, Ann's reminders buoy me. Oh yes, I think, this does help. I'll say thank you for what is good. I'll say thank you for what I can still do. I'll be grateful for the supportive people in my life. I'll try focusing on the good because it will be amplified.

Chronic illness presses hard, crushing the breath out of me. My chest hurts, my hips hurt, my ribs feel broken.

Chronic gratitude infuses life, a whiff of grace. It's the gift that keeps on giving.

So tonight, after a particularly hard pain day, I type this post not just to review these beautiful products, but to say Thank you to God, Thank you to Ann, and Thank you to DaySpring, for reminding me of what and Whose I am, all I have to be grateful for, and how to make thanksgiving a lifestyle.

*DaySpring sent these products at no expense to me, in exchange for my honest review.*God in the Moment DayBrightener can be ordered here; One Thousand Gifts Photo Gift Book can be found here. 

Fighting to Thrive

Have you ever felt yourself drowning in the chronic pain & illness sea?

That's where I've been the last few months. The fatigue that accompanies my disease had passed the point of ridiculous. I was so exhausted that I could barely function.

Honestly, the whole summer has been quite difficult in many ways.

But there is light now...

I finally kicked my way to the surface enough to call my primary doctor.

I treaded the proverbial water while I had blood drawn for labs and waited for the results that offered hope... my thyroid, which hasn't been behaving itself for at least two years now, had acted up in a new way.

Hope came in the form of a new thyroid supplement. So now every morning I swallow two tiny pills to help my thyroid know to do its job.

Hope came in the form of a call that said, "The doctor is happy to see you. He can see you in September."

So there's treatment now, and there's new options and expertise on the horizon.

I don't feel quite so much like I'm drowning now.

This is for you: the one who feels she's drowning. This is to say, "Please keep fighting."

You have a beautiful life to live. You are a unique gift to the world. So please keep fighting to live your best possible life.

That's what I'm going to do. And we'll do it together.

The "Chronic" I Want to Be

We had a big weekend, and Sunday afternoon I collapsed into rest mode. I thought I'd be okay if I got off my joints for several hours, but Monday I was even worse. My knees were on fire, my hip was in such pain I was nauseated, and I had no energy. Some with lupus and other autoimmune diseases call themselves "spoonies," in reference to the Spoon Theory written by lupus sufferer Christine Miserandino. In the theory, she attempts to explain to a friend how energy works when you have chronic fatigue caused by the battle of chronic inflammation and pain in a body like ours. She explains that at the beginning of every day you are given a handful of spoons and each task takes one or more spoons. Some days, she elaborates, you wake with only one or two spoons. It's those days that are killers, because you have to make deliberate choices about what's most important. Do you want to exchange your one "spoon" of energy for a shower? Or would you rather use it for running a load of laundry so your family has clean clothes to wear? 

Let's just say that Monday and Tuesday I was running on zero spoons. I rested as much as I could, around taking care of my daughters, and tried to fight the mama-guilt and the worry that comes with flares. I coached myself that a flare does not necessarily mean "new normal." Last winter, for example, I was in a long flare. I began having new symptoms like nerve pain down my leg. I got a cane and used it off and on. I spent a lot of time in my bed. I developed a new level of appreciation for things like electric blankets, wedge pillows to prop myself up, pajamas and pretty-smelling lotion. I worried a lot that my disease, Ankylosing Spondylitis, was progressing and that this would be my "new normal."

But finally, eventually, the flare eased, and I was back to my "old normal" -- battling pain, stiffness, low-grade fevers, and fatigue regularly, never feeling "good," but walking without the cane, rarely having the nerve pain, and not in bed nearly as much.

This week I worried. I worried that I, in this condition, am not Good Enough. I worried that my fatigue might overpower my will power, and wondered what life would be like with never ending Zero Spoon days. I worried that I would not be a good enough mama, a good enough (homeschool) teacher, a good enough anything.

Wednesday I was still exhausted and hurting and limping on that hip and those knees, but I had more spoons in my bouquet and I was able to run a bit of laundry and vacuum and tidy up the house. We had dinner with friends, although I didn't have spoons left to apply makeup or do anything with my hair or change out of comfy lounge clothes.

Today I made it out of the house for almost three hours. I took my girls to the park to enjoy the warm sunny day.

We did a couple of errands including picking up food for our kitten Mitzy, and checking out armloads of books and DVDs from the children's section of the library.

We came home and I finally made good on something I've been wanting to do with my girls for a couple of weeks: bake cookies.

Natalie helped me unwrap sticks of butter. Both girls helped me roll dough in sugar. We baked till barely golden brown and enjoyed a couple with squaty glasses of milk.

We waited till they all cooled and filled up our new-to-us adorable Goodwill cookie jar adorned with a kitty, bunny, bear and mouse.

By the time the oven was turned off, my spine was screaming in pain. I was almost cross-eyed from fatigue, but so happy to have mastered a day the Old Me did regularly. So happy to make memories of park fun and cookie baking with my girls.

I don't know what tomorrow holds. I don't know if at some point, the New Normal I fear will catch up with me. But I know that today we lived and loved and did what we could. I also know that without resting for a few days this week, I wouldn't have been able to do today. So this isn't a post to say, "Go ahead and use the energy you don't have because the memories will make up for it." No. We must become wise. We must know our bodies, know our diseases, know our triggers, and know when the pay off is worth it and when it's not.

Today I'm thankful for the energy to bake cookies with two little girls who call me Mama. And if I don't have any energy tomorrow, I will try to remember not to worry. I will do what I must and rest when I can and be thankful for two little girls who cuddle with me when I'm "down" for the day.

I will keep working on releasing expectations, and separating my sense of worth from what I am able to accomplish. Spoons or no spoons, I will be aware of what I am grateful for. Because I fully believe that what we are grateful for becomes enough, and gratitude creates the joy and peace we crave.

When all is said and done, I want people who knew me to say that more than chronically ill, more than chronically in pain, I was chronically grateful.

That's the kind of "chronic" I want to be.

Journey to Brave: The Realities of Daily Pain

{Art journaling by Jennifer LeBlanc 2012. All Rights Reserved.}

Pain is an opportunity to practice courage.

People have told me how amazed they are that I continue smiling through the pain. That's not always the case, and this picture was taken to prove that. I post it with trepidation. It's not pretty. Neither is severe pain or living with it.

The picture on the left was taken on my way to church with my family. This is what people often see. I'm done up and out. I look 'normal.' I am likely in significant pain even when I look like the left picture. What people don't see is the effort it takes to get the pain under control and get myself looking like this and get out the door. The picture on the right is what people rarely see. This was taken the other night while I was in a severe episode of Costochondritis, a frequent symptom I have, when the inflammation flares in my sternum, rib cage and chest. This particular attack was my spine, ribs, chest, sternum, all the way around, front, back and sides. I literally felt "IN pain." I was inside of it and it held me in its clutches as if I were a bird in a cage. Costochondritis is commonly described as feeling like you are having a heart attack or an elephant is sitting on your chest. It's incredibly painful and makes every breath painful as well.

If it helps you to understand better, check out this image.

The chest is made up of many, many bones and joints. I could feel every single one.

I do not write this for your sympathy or pity. I do not write this to complain. My reason for posting this is to help raise awareness. Because I am just one of the mass of people out there living with daily pain. 

If you are one of those with chronic pain, I write this for you. I write this to say, "You are not alone!" 

{My daughter drew this picture to illustrate an elephant on Mommy's chest}

Pain takes its toll, especially severe pain. It is difficult, and sometimes not possible, to live a normal life of responsibilities and activities when pain is part of your daily reality. 

Please understand that we are not lazy if we sleep more than you do. We are not "lucky" to have frequent rest times. I cannot tell you how frustrating it is for me, as a person who thrives on being productive, to have to rest while life all around me doesn't stop.

And because life doesn't stop for chronic pain and illness, as it might temporarily pause for those who take a sick day from work, I have to learn what I can and cannot manage. I have pain every day, 24/7. I honestly can no longer remember what pain-free feels like. So please understand if I cannot watch your kids, lead out in activities or events, or if I have to cancel our afternoon get-together or play date.

I cannot express what a gift it is when people don't judge. When you say, "I'd love to get together but please feel free to cancel if you're having a bad day." When you're at the store and you text me to see if I need something picked up. These are real life examples of things my friends have done for me in the last week. You are a gift to me. Your understanding, or willingness to try to understand, is not something I take for granted. Thank you!

I firmly believe that if you just look for them, there will always be more blessings than struggles.

Many Blessings: Looking Back and Looking Forward

I remember shopping for rubber stamps in the months before my diagnosis with Ankylosing Spondylitis in 2010. I wandered the aisles of Craft Warehouse and selected a package that inspired me. The stamps were of cherry blossoms and soaring birds, with words like {Many Blessings} and Bloom and I decided right then and there in that aisle that I would do just that.

I decided that no matter what came with my health and my joints and ability to walk, I would keep growing and live joyfully and I would try to live my life in such a way that people watching could be inspired.

Because we all have battles, don't we?

Today I was doing some journaling. I got out some stamps and ink pads, and stamped the words from that package of stamps on heavy ivory pages and I remembered that time so clearly. I remembered the fear and the worry, the new symptoms that popped up frequently (autoimmunity is like a circus, you just never know what new and colorful thing will surprise you next), the months between when my primary care doctor said she was certain I had AS and 3-4 months later when my rheumatologist confirmed the diagnosis.

I remembered reading posts by Sara Frankl, and being strengthened by her attitude of daily joy regardless of the circumstances. I filled myself that summer, reading inspiring things, feasting on outdoor beauty, and journaling my own feelings and declarations that no matter what came, I would grow and I would fight and I would live my best life.

For me, it's important to look back and remember the milestones. It's important to regularly think about the choice and commitment I've made to find a way to weave beauty, inspiration, courage and my dreams into my reality.

I'm thankful for books and blog posts that have kept me inspired. I'm thankful for the example of how others fight their battles.

I feel buoyed by the realization that I have done the best I could so far, and that I have kept a joyful, thankful outlook. I'm thankful for everything and everyone and the One who have helped me do that. I'm also thankful for grace when I can't fight for a day or two and need some time to just grieve what the reality is.

I choose again today to continue to live with as much courage and strength as I can muster, to offer grace to those around me and to myself when needed, to use my words to heal and uplift, not to harm.

I choose again to keep fighting to make my dreams reality, even when my reality is heavy and hard.

Hitting the Pavement {& Choosing Joy Anyway}

Last post, I wrote about chasing the pavement. How it felt to fly (walk halfway normally after limping, hip pain and occasional cane use). I was as "unflared" as I get these days, and living life to the fullest.

But by that night, I was no longer flying, but instead falling from the sky, and hitting the ground (aka my bed) hard.

THUD.


How that hurts, the hitting of the pavement when you've just been chasing it.

I wasn't sure if I was flaring or had just overdone it. My hands, feet and hips were wrecked. So I rested, again, tears trying to sneak out.

I forced myself to apply pen to journal page:

Deflated today. Have overdone it and thrown myself back into a flare, it seems. I'm sad to feel like this again so soon. I get relatively used to it when I'm in it, but slammed back to the ground after flying is brutal. The sudden shift in ability, energy, fatigue and pain levels is just plain rough.


Have to allow myself a bit of grief, some hours to process and adjust back to what is, unfortunately, pretty much my normal now.


Giving myself some grace today. I know I'll adjust soon, but for today I'm just really sad to be chronically ill.


It took some days but it seems I haven't completely re-flared myself, just overdid it. I'm thankful for that. I'm thankful for the memories of getting up early, walking quickly, watching the sunrise, taking pictures and listening to music in my neighborhood.

Maybe the memories are worth the pay off. That's something I'm still trying to decide.

--------------------------------------

Today? Looking forward to (in)RL!, (in)courage's first virtual conference event. I've written about Sara Frankl here before. Sara, our gitzengirl, was homebound due to Ankylosing Spondylitis and severe complications, including to her lungs. She died in September of last year, just one year and 2 days after I was diagnosed with the same disease.

I will always be grateful for her example to Choose Joy despite circumstances, and I look forward with great anticipation to meeting her one day. Today the (in)RL conference agenda includes a portion dedicated to the memory of our community's sweet Sara. There will be tears. And we will then remember what we are here to do: live fully, live well and with intention, and choose joy despite our abilities and our circumstances.

I can do that. By the grace of God, one day at a time, I can do that.

Have a great weekend, my friends!

Surviving a Flare: 10 Things That Make a Flare More Bearable

If you have a chronic illness or chronic pain, tell me what makes your flares more bearable. If you love someone with chronic illness/pain, these things might be good ideas for gifts or ways you can reach out to someone around you.

1. Fresh Flowers -- It's harder for me to get out when I'm flared. Fresh flowers remind me of life, bring some of nature's beauty inside, and brighten my spirits. 

2. Juice, Bottled Water, Gatorade -- Pain and fever can make me nauseated and effect my appetite. When I'm in a flare, it's great to have a variety of cold drinks.

3. Clean Sheets -- I spend more time in bed than usual, and fresh clean sheets just make everything better.

4. Plenty of PJs -- Once in a while a new pair is a treat.

5. Heating Pads & Pillows -- If I could choose only one thing to get me through my flares, it would be this heating pad, which is electric, and has a timer and temperature controller.

6. Slippers -- I can't walk around without slippers or special shoes without my feet really hurting.

7. Entertainment -- Books from the library, music, magazines, DVDs or Netflix, blogs. Something to help pass the time and distract me from the pain is fantastic. I gravitate toward serious things usually, but am learning the value of a good laugh. As they say, laughter is the best medicine.

8. Lotion, Epsom Salts, Bubble Bath, Lip Gloss -- I've never appreciated pampering things more.

9. Snail Mail -- A card in my mailbox makes me happy. A care package would make me turn cartwheels, if I could do things like that. :-)

10. Easy, Nutritious Food -- Soup, salads, sandwiches, yogurt. Easy to prepare or already prepared, light, and not spicy.

Do you have pain or chronic illness? Tell me what makes your flares more bearable.

Christmas Moments

It seems Christmas season rushes past faster and faster every year. I tried to stay awake to the moments this year (not easy with chronic pain and fatigue) to take a snapshot (literal or mental), to jot down something the girls said, to remember how that mug of peppermint hot chocolate tasted and how the sound of the music and the glow of the lights came together to make the magic I look forward to every year.

Now that it is over, the lights and ornaments packed away in their Rubbermaid bins, the naked tree discarded behind the house, the cupboard absent of the mugs sporting snowmen, doves, holly berries.... Now that it is over, I want to look back and remember some of our Christmas moments.

There was the annual Sunday morning that begins with pumpkin pancakes and coffee and the buzz of beginning-of-the-season excitement. We went to the tree farm and made small talk with the owners and chased little girls through tree acreage and snapped pictures. I kept reminding us all to "think small" because we have a little house, practically a cottage, and every year we end up with a tree that is far too big and Jonathan has to trim it significantly to get it to fit. The Think Small mantra worked and when we got our tree home it was the perfect size for our cottage... not too big, not too small, but just right.

There was the shopping trip where we found the perfect matching Christmas jammies for 5 and 7 year old sisters. There was that moment in the girls' clothing section of Target when I closed my eyes and breathed gratitude for my family and for Christmas and the meaning behind it, and felt the anticipation of the coming weeks and all the precious moments we would share and the memories those moments would make.

There was the afternoon that my older daughter and I went to see a local production of The Nutcracker and I sat in a flip-down red auditorium seat and ignored the pain as best I could and observed the art of ballet and the wonder in my daughter's eyes.

There was the moment, later that night, that we created a new tradition -- the First Annual Sisters' Christmas Tree Slumber Party, where we set up sleeping bags on couch cushions as near to the glowing Christmas Tree as possible, and we put on our pajamas and got cozy and watched Christmas movies and drank peppermint hot cocoa and giggled until hours past bedtime, and then I tucked them in and stayed quiet at the other end of our little cottage while they fell asleep to Josh Groban's singing and the smell of noble fir.

There was the moment before Christmas Vespers, where I curled ringlets into blonde hair and the moments later that night where Hannah and five other little girls represented angels in a live nativity.

There was the moment when we left Christmas vespers and I said, "I have a fever," and I got home and I did, and I could barely limp down the little hall to my bed that night. But those aren't the moments I want to remember, they are just the moments I want to rise above. However, if someone with a chronic condition has any tips for how to make a magical, memorable Christmas for kids without going into a flare, I'm all ears.

There was Christmas church wearing red and black all together and standing in the front of the church with my parents and my daughter and singing "Go Tell it on the Mountain" with a big smile on my face.

There was time with my parents and my sister and good food and moments all hovered around the island laden with Mom's traditional goodies like fudge and English toffee, while we snacked like happy vultures and joked. 

There were many Christmas movies and many Christmas CDs and the Gingerbread house and the cookie baking.

There were many resting moments where we pair a heating pad and recliner with snuggling time.

There was the moment we captured when Natalie helped Daddy prepare Christmas dinner yams.

There was Christmas day when the four of us gathered around a candle lit dinner, and I snuck a bite of yams off Natalie's plate (because they were yummy and I wanted to see if she'd notice), and she non-nonchalantly leaned over and very quietly and sweetly whispered, "Can't you use your manners?" and twelve days later, randomly on a Friday afternoon, she again asked, "Mom, next year when we are eating Christmas dinner, do you think you could remember your table manners and not snitch food off my plate?" 

There was the ear-piercing scream when Hannah unwrapped the Veggie Tales DVD she wanted, and the smile that could split a face when Natalie pulled a bunny Pillow Pet from a package.

Presents are fun, but for me this year, the best gifts were the moments that became memories.

There may always be pain, but that's no reason to let the joy go. On the contrary, it's a great reason to fight all the harder to find the joy, create special moments, and capture them into memories.

Not Good Enough vs Just Right

As hard as I try to convince myself otherwise, there are going to be some days in which I can't succeed like I want to; success won't look like I envision. I won't be able to make my life look like what I think it should. It will be exhaustion and low-grade fever and pain that's hard to bear.

It will be a cottage full of Mama Bear and Baby Bears in pajamas at nearly 3 p.m.

That's chronic pain for you. That's chronic illness.

It will also be a chance to slow down that we wouldn't otherwise take; a chance to wear fuzzy pink slippers and bathrobes and pile into a big bed that's just the right size and read a big pile of storybooks.

It will be time to learn some Spanish. Time to discuss manners, sibling relationships, trying new foods, the science in the natural world.

It will be time for cuddling close -- for a 4 year-old head on my shoulder, and a 7 year-old hand, tanned brown from summer sun, resting on me.

It will be time slowed down.

And this evening when Papa Bear comes home from work, the house may not be clean, the table may have gone unused for schooling, but we will be calm and loving, and we will have learned and grown today, and we will be a little bit closer for this time we told to slow down and the hours we cuddled close and knit our hearts together.

Isn't that the success I envision?

Thoughts on Healing

Healing is a touchy topic. Especially when you are the one deemed needful of healing.

There are all kinds of healing -- physical, emotional, spiritual, mental, social, marital.

Throughout my three plus decades I've experienced a few of those. Not necessarily instant or dramatic. Not easy.

I have felt conflicted when people suggest I pray for healing, get anointed, etc....

I wasn't sure why that was. It's not that I want to be sick and in pain.

During this past weekend, while attending a Women of Faith conference, some of my thoughts and feelings on the subject became more clear. I haven't written about it for a few days, trying to allow time to process it more fully.

I hesitate to put it here because of reactions and comments. I hesitate because I'm not sure I can express it clearly enough.

But here it is anyway:

I believe healing comes in different forms.
I believe healing looks and feels different to different people.
I believe my healing might come in the form of physical pain & disease.




i'll give us all a minute to think about that.




I want what God wants for me.

I desire to be the woman He created me to be. I trust His plan for my life.

If that includes this, so be it.

Please understand, I don't make that statement lightly. It doesn't mean that I won't fight and keep searching for effective treatments. It doesn't mean I'm giving up. It doesn't mean I'm succumbing.

It means that as I go to physical therapy, do my exercises, endure times of severe physical pain, limp, swallow vitamins, swallow medications, drink lots of water, take my heating pad to bed every night..... as I do those things, as I fight the best I can, I trust.

I trust He knows what's best for me.

And while all of this doesn't appear to be the best, if it draws me to His heart, if it forms me into who I am created to be, if it helps shape His plan for me, I trust.



*all images in this post taken by our friend Terence McLeod.

When You're Walking in Shadow

As a person of faith I know, cognitively, that I am not alone. That my God walks with me, never leaving me.

But sometimes the shadows come and I walk in darkness. And that walk becomes a limp.

I wait for the moments I step into sunlight again; I wait for the warmth that takes the pain away, the light that soaks through my heart.

It's one thing to know that I am not alone.

But sometimes I need to feel it, to see it, to touch that knowledge.

Today I am thankful for the visible and touchable reminders God sends into my life that tangibly reinforce the reality of His presence and grace.

A Night in the Life of Chronic Pain and Gratitude

 

I go to bed with a heating pad and a special pillow and I close my tired eyes and try to quiet my mind which is running in a way I no longer can.

The pain in my chest keeps me awake and my cheeks are damp from knowing she is nearing the end of her time with us.

I toss and turn but even that is altered now -- it's a process to turn over and there's pain if I lay on my back and pain if I lay on my hips, and if I lay on my side my ribs ache.

I give up for now, and push aside the covers, reaching for my glasses on my bedside table, and quietly get into a sitting position and then stand and grab a sweatshirt and slip out of the bedroom as silently as I can, trying not to wake my husband.

I put on the tea kettle and flip the knob to high and watch as the burner glows red in the dark kitchen. In the dark night.

Opening the microwave, I ball up a second heating pad and place it on the rotating glass plate and press "3." The appliance hums to life loudly in our silent home and I hope, like so many previous nights, that I am not disturbing the rest of the three gifts God has given me -- my husband Jonathan, and our daughters who sleep with well-loved bunnies and dollies in a shared bedroom lit by soft nightlight.

I pad over to my recliner and sit with my now-hot heating pad placed against my chest, where it feels like a heart attack is brewing right along with my tea. Costochondritis, inflammation of the chest wall, is just one of my symptoms with Ankylosing Spondylitis.

I rock and sip and wait for medication to kick in, and remember when my oldest was only 4 and she would find me balled up on the floor and tell me, "Medicine takes a long time to kick in, Sweetheart, but it will kick in." She would squat down and stroke my hair and sing me a little song.

My family has lived with chronic pain for several years now. It has come in different forms -- first, after a miscarriage, as pelvic pain, and then as spine and joint pain.

It wasn't invited, but it's here nonetheless, and although we didn't ask it to come, we have learned our way around it. We have learned, every single one of us, how to take better care of each other. We have learned, from 6'2" Jonathan to 44" Natalie Kate, how to be more compassionate.

We have learned how to love better and how to be more patient and we have absolutely learned to be flexible with plans, as I don't know from one day to the next how I will be feeling. Because of that unpredictability we've also learned how to seize the day. Mama isn't limping today? Let's take a family walk!

I sit and rock and sip and wait for the heat and the medicine to soak in and through me and I wipe away a tear that represents the grief I feel over Sara's life ending soon. More tears swell up and pool in my eyes that represent this profound love I have for my family and friends and life itself, and my gratitude that I am here to experience all of this, the good and the bad.

Eventually I head back for a second try at sleep. I slip back under the covers, fold my glasses back onto my bedside table, adjust myself with two heating pads and a special pillow, and finally drift off to sleep with my chest hurting and my heart aching.

I don't enjoy the pain, and I resent how it effects our family (especially when I see the hurt and worry in my daughters' eyes), but I relish these sweet gifts it has taught me:

Live this life you've been given. It's precious!

Guilt and the Chronically Ill Parent

From the age of three I longed to be a mother, and it never occurred to me that for reasons beyond my control that might prove difficult.

I have lived with chronic pain since before my oldest daughter was two years old. By the time she blew out five candles, I'd been to the Operating Room five times.

Throughout my life, despite a loving, stable family and good upbringing, I have encountered health challenge after health challenge. Just as I had prior to motherhood, I fought to rise above and not let my health overcome the person I wanted to be and the life I dreamed possible.

I searched for treatments that would fix the problems and continued to fight to overcome, or at least diminish, the pain so I could be the best mother I could be, not offer my daughters only a portion of my attention, love and energy.

Sometimes it feels that as soon as I rise above one problem, another surfaces. When my oldest was six and my youngest three, I was diagnosed with a disease that had also attacked my father when I was a child, Ankylosing Spondylitis.

As difficult as it is to be elderly and stiff, in pain, and have trouble getting around, imagine those problems when you are 30, with a job, a household, and small children. Arthritis, unfortunately, does not only effect the old. Diseases like Ankylosing Spondylitis and Rheumatoid Arthritis typically strike between the ages of 15 and 50.

And so it is that I am raising my young daughters in constant pain with a body that operates like it's 80.

Determined not to feel guilt over the worry and strain my disease places on our young marriage and family, I become very clear on exactly what I want my daughters to remember, on the childhood memories I want them to have, and most of all, the mother I want to be, and then I work twice as hard and resolutely to be that mother, to create those memories, and to make the love I give so strong and the legacy I leave so rich that it overshadows the pain and the slower pace with which we must live life.

Guilt is easy to feel when you are a parent and even more so when you are a parent with chronic pain, but I will continue to do what I do best: love my girls. True love defeats fear, defeats guilt, and will defeat chronic illness. I will be a good mother because I will make it my biggest priority to love well.

At the Feet of the King

Arthritis creeps into my feet and for a long week and counting they hurt incessantly. Trying to keep up with active little girls and domestic chores requires a lot of time on one's feet, and my feet aren't up to the challenge.

I try anyway -- to walk the good walk, fight the good fight, smile through the pain, and remember every moment how very blessed I am.

Because, you see, I have feet. Some people don't. I have medicine. Some people don't. I have a wonderful husband, and some mothers with chronic conditions do not.

At the end of a long week, after a grocery shopping excursion that leaves my feet feeling like they're on fire, I sit in a chair and put them up, because I just can't walk anymore.

My husband makes dinner, bathes our 4 year-old, and because he's not already busy enough, serves me strawberry lemonade.

After I hug them goodnight from my chair, our little girls in footed pajamas are tucked into their beds, kissed, and prayed over.

Jonathan returns and says, "Hey, don't you have a little inflatable foot soaking tub?"

Ten minutes later, he has arranged my chair, crafted a platform out of a Rubbermaid storage bin, draped a towel across the platform, and filled my (now inflated) foot tub with warm water and lavender scented Epsom salts.

My feet slip into warm water and when they emerge, the pain is all but gone.

---

Jesus once did something similar. He filled bins and knelt to wash His followers feet, and I bet that when their  feet emerged from the water; when their eyes met His eyes of love and grace, their pain (both of the flesh and the heart) was gone.

In this life, I may not win the chronic pain battle. People we love will die. But I think often of the day when I will look up and meet His eyes, and my pain (physical and emotional) will be gone. In that Holy presence, all peace, all hope, all love, all grace, all things good will soak through to the heart of His children and I can't even imagine what that will feel like.

I will sit at the feet of the King, and I can't wait for that day!

"And God will wipe away every tear from their eyes; their shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things are passed away."
{Revelation 21:4}

On Listening and Learning

"God has not only read your story, He wrote it."

Max Lucado

Over a year ago, God planted the seed of an idea in my heart. The idea to homeschool my daughters. While I've always known that I desired to be a mother, and that motherhood was, in fact, my greatest dream in life, I never thought I would homeschool.

When the idea began to take root and grow, I searched and searched for the origin. Where did it come from? I spoke with trusted people in my life, journaled and journaled and journaled about it, made lists of pros and cons, researched alternatives, researched curricula, and read books on homeschooling. I couldn't shake the idea that this was what I should do. 

After months of grappling, I finally made the decision to homeschool. This decision brought indescribable peace.

Shortly afterward, I was hit with my first major, unrelenting flare. I have not felt well for over a year now. Last summer was spent at multiple doctors' offices, having lab work done, waiting for results, waiting for consults. And shortly after we began our homeschool year, I was diagnosed with Ankylosing Spondylitis, a chronic inflammatory disease that attacks the spine and joints, often causing pain, fatigue, difficulty with mobility, and worse.

Homeschool has been different than I envisioned. It's difficult to be chronically ill with children, let alone be responsible for their education and attend to all of my other responsibilities. But the things I wanted -- reading together, encouraging a love of reading and creativity, prolonging childhood, having more quality time together -- are happening.

I believe God nudged me into homeschooling; that it was His will for our family. He knows the end from the beginning, so of course He knew when He began to nudge that I would get sick and that chronic illness would be a factor in this plan.

So I conclude that if He nudged and it was His plan and He knew I would develop Ankylosing Spondylitis, He also planned to provide what it required.

I don't write this to compare homeschooling with traditional schooling. The point is the reminder I've experienced: learn to listen. Looking back, I see that the best aspects of my life began with just a nudge.

Thoughts on Chronic Illness

"Is your back hurting you, Mama?" a cool little hand slides up my shirt and rubs my back.

Most mornings, my room is her first stop after waking. She slips in quietly, reheats my heating pad, and returns to tuck it over a nagging shoulder, a back that feels broken, or a throbbing hip.

Heat quiets the pain and promises soothe my fear.

His promise to love in sickness or in health.
His promise never to leave or forsake me.

Chronic illness crept in and changed our lives. It doesn't affect just me. It changes our marriage, our family; the rhythms of everyday life.

Today I sit in pain, as if a cloak of discomfort has been settled over my shoulders and wraps around my entire body. I feel like a turtle that just can't get up to speed. But I sit assured by the love my family has for me, something chronic illness hasn't changed. I'm still his wife, still that girl he fell in love with over a decade ago. I'm still their mama, and despite the limping and fatigue and feeling decades older than I am, I'm still the one who bakes cookies, reads stories, and braids wet hair.

I'm still me, and I'm still loved. Chronic illness doesn't change that.