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.

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.

Traversing the {Chronic} Trail

“The marvelous richness of human experience would lose something of rewarding joy if there were no limitations to overcome. The hilltop hour would not be half so wonderful if there were no dark valleys to traverse.” {Helen Keller}

I read other blogs that chronicle personal lives of chronic illness, and they are soothing. I am not alone. I find myself inspired by reading how others manage their conditions, especially when they do so with great intention, deep thought, and positivity. 

So why am I afraid to write too much about my own condition? As human beings, aren't we longing for connection, for stories and accounts of what it's like for someone else?

I am afraid because I do not want to come across as dramatic or negative. I want to write the truth of what is, and quilt it together with inspiration and insights into hardship and suffering, comfort and prevailing joy. I want to show you my reality just as fact, not for attention or as an outlet for whining.

I have been struggling lately with this desire to express my experience. How do I do it in a way that is real and true and still inspirational?

How can I show you my world, through my eyes, so that you see (as I so often do) that hardships serve a tremendous purpose of bringing into focus what is important, and of amplifying the simple into a peace and joy that is enough?

I want to write to show those just becoming ill, just going through the diagnosis process, that there is beauty in a "chronic" life. I want to leave a map. And not just a map, but a sturdy pair of hiking boots that don't blister, and a bottle of cold water, and some hearty trail mix. I want to cheer you on up those hills so that you can see the beautiful view just over the top.

I'd love your input into how best to accomplish those goals.

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.

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.

The A-Zs of My Life with Ankylosing Spondylitis

{Trees and their beautiful strength inspire me to Stand Tall}

A is for Autoimmune. My body is attacking itself. A is also for Arthritis. There are multiple forms of arthritis. Ankylosing Spondylitis is an autoimmune form of arthritis, which primarily attacks the spine and large joints. It can also attack organs such as eyes, lungs and heart. This is not your grandmother's wear-and-tear, growing-older osteoarthritis.

B is for Bone Scan, the type of test which showed damage to my spine.

C is for Community. I don't know what I would do without the support of my family, friends, and local and online communities. C is also for Compassion, something I hope my daughters both have in spades. Growing up with a chronically ill mama is helping them learn to look out for others. C is for Cane, a mobility aid I may use in the future. C is for Costochondritis, inflammation of the chest wall, one of the pains I have regularly.

D is for Vitamin D, a supplement I take for bone strength.

E is for Exercise. Movement is a good thing for AS, but it has to be a form of exercise that is helpful, not harmful. I used to enjoy walking outdoors for exercise, but I currently can no longer walk much without damaging my body even more, so walking for exercise is a fond memory now. E is for Elephants, not something that has much to do with AS, but my favorite animal since age 7 and they still make me smile. E is also for Encourage, something I love to do. I can't do the splits or high kicks anymore, but I hope those around me see me as one of their personal cheerleaders.

F is for Fatigue. Some days it's hard to say what is more difficult, the pain or the fatigue. Not your normal tired. F is also for Flare-ups. When my symptoms are worse than normal, I say I am in a flare. F is for Fusion, the proverbial end-goal of Ankylosing Spondylitis. The spine tries to heal itself from the damage of constant inflammation in the joints by growing new bone which fills in between the joints and fuses (hardens) all the joints into one solid length of bone. Depending on where it occurs, fusion can make it difficult or impossible to bend, turn, walk, or even take a full breath. F is for Faith, not only in myself and my family, but also in God who says He has plans for a great future for me.

G is for Genetic. My family has forms of autoimmune arthritis, including Ankylosing Spondylitis and Rheumatoid Arthritis, on both sides. A few months before I was diagnosed, I tested positive for the gene associated with AS. G is also for Gratitude, an attitude I have adopted for life. No matter how bad my pain or my day is, there is always so much for which to be thankful. This isn't something I say flippantly, it is a deep part of how I view my life.

H is for Heat. Heat helps reduce my pain and helps prevent my body from clenching up, which causes further pain. I have multiple heating pads, an electric throw, and even a car blanket that plugs in.

I is for Inflammation, the inherent problem in my chronic inflammatory disease.

J is for Joints. I have pain in nearly every joint, jaw to toes, although not in every joint every day. J is also for Jonathan, my husband of almost 10 years who takes great care of me and thinks I'm cute even in pajamas.

K is for Kids. I always knew I wanted to be a mother, first and foremost. I am so grateful to have two sweet daughters who keep me laughing, moving, and thinking about other things besides myself and my problems. My girls are my buddies, they keep me company every day, whether good day or bad day. I enjoy encouraging their interests and artistic abilities, as well as being their teacher.

L is for Limp. I limp fairly frequently due to pain and problems in my hips, knees, SI joints, and feet. L is also for Lab Tests, which monitor my thyroid, iron and inflammation levels, keep an eye on how well my organs are functioning, as well as watch for development of other conditions.

M is for Memory Foam. I use memory foam pillows in bed and in my recliner.

N is for NSAIDS,  one class of medications commonly used to treat inflammatory diseases like AS. NSAIDS include medications such as Ibuprofen and Naproxen (Aleve).

O is for Omega 3, another supplement I take which is good for joints, among other things. O is also for Overdo, something I try not to do, while still making the most of every day and this life.

P is for Pain. I live with pain every day. It never goes away. P is also for Physical Therapy. I recently finished 3.5 months of PT.

Q is for Quick, something I am not anymore. I have adopted a slower pace for life, out of necessity and also to help prevent stress, which can contribute to flare-ups.

R is for Rheumatologist, the doctors who specialize in treating arthritis and autoimmune diseases. R is for Rest, something I have to do fairly often, which isn't always easy. R is for Recliner, a big gift I received for my last birthday/Mother's Day. We also jokingly called it the "Congrats-You-have-AS! gift."

S is for Spine, the #1 place AS attacks. S is also for Stiffness, the symptom that finally caused me to think maybe I had arthritis. S is for Stand Tall, the motto for AS. Better posture means, hopefully if I fuse, I will fuse straighter. My husband wears a LiveStrong style wristband, in support of my fight, which says Stand Tall.

T is for TENS Unit. While I don't often turn to this form of pain relief, when I am to the point where nothing else is helping, the TENS unit can sometimes give me a break from the pain. T is also for Thyroid, another thing I am being treated for and which is commonly a problem with autoimmune disorders. A few months ago I had an ultrasound of my thyroid.

U is for Unconditional, the way my husband loves me. It means the world.

V is for Victory. I believe my mental ability is more important than my physical ability. I believe that no matter what AS does to my body, it cannot damage my spirit unless I allow it to. I choose to maintain a positive attitude as much as I can, so that I win, not chronic disease.

W is for Water. High impact sports and forms of exercise are not advised for those with AS. I am advised to stick to low to zero impact exercise, like a gentle water exercise class. W is also for Writing, one of the things I enjoy doing to feed my soul and distract me from the pain.

X is for X-Rays, one of the imaging tests used to check for disease progression and damage. Others are CT scans, MRIs and bone scans. I have been diagnosed for 16 months and have so far had two of these tests.

Y is for saying YES to life! Because having a disease like this just makes me more aware of how precious life is.

Z is for Zipper, an amusement park ride my 8 year-old decided she would never ride again last summer. While she was experiencing those rides, I kept busy waving and taking pictures, as amusement park rides are something I can no longer do. Z is also for Zest, something I try to maintain for life, no matter what challenges I face.

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!

Ankylosing Spondylitis & the Authentic Truth: What's Happening in my Home, My Heart & My Body

It's funny how for weeks I can't think of a thing to blog about, and then all at once, I am inspired to saturation-point.

Maybe it's a new blog or two in my reader, a clean room in my house, new pages lengthening my manuscript, sunshine and how we soaked it in this week. Maybe it's fresh lemonade with strawberries made by my handsome husband, or maybe it's recognizing how tall and gangly my daughters are growing. Maybe it's knowing more summer fun & memories are just around the corner, or knowing a new year of learning at home with my girls begins soon. {I find inspiration in the school supply aisle... always have.}

Whatever it is, I want to write about it but there's so much to say, I don't know where to begin.

Balanced with all the goodness I just wrote about is the underbelly of the coin -- not so good, refreshing or inspiring. Things like doctor's appointments, frustration & confusion, more tests looming, more vials of blood drawn, a house that I can't seem to keep up with and how I have allowed that to stop me from inviting friends over for a playdate or tea party or dinner. There are stressors -- we all have them -- and so many things to try to stay current with, and that has become very difficult.

I could tell you about several weeks ago when my feverish four year-old needed to be carried from one room to the next, and how due to a back flare-up, I had to ask her to walk while holding my hand. I could tell you how bad the pain in my spine was, and how I couldn't bend to lift her, but it doesn't compare to how sad my heart was when I couldn't just scoop up my hot, miserable little girl and carry her.

I could tell you how my ribs and chest hurt so much that it's painful for my children to cuddle too close to me. I could tell you, again, that I worry about my future with Ankylosing Spondylitis and especially about my mobility.

I could explain how exhausted I am and how difficult it is to get out of bed on a daily basis. How much I yearn to be present in my little girls' lives and hearts and the guilt and sadness that can come when I can't be the mommy I once was.

No, I can't take you to the library today. 
I'm sorry, it hurts too much to have you on my lap right now.
I wish I could bake cookies with you, sweet girl, but Mama can't stand for that long right now.

My eyes are welling with tears, and this is how I know that this is the authentic truth.

The pain can be severe, but what is unbearable is what it does to our family sometimes.

I know I could tell you what chronic illness and pain give me. And I will tell you about the gifts found in all of this in a future post.

But for now, it's okay to take a moment and just admit how much I hurt sometimes when my body can't match my heart.

Bad day or good day, I thank you for coming along on my journey. I hope you find a kinship and truth here. I hope you leave inspired or hopeful. I count many of you among my dearest friends & family, my support system, cheerleaders, fellow AS journeyers, sisters of body and heart.

Thank you.

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.

Finding the Balance with Chronic Disease

It can get discouraging -- the spectrum of pain and ability (or dis-ability) my health can span in a single day. Yesterday, despite raging back pain, I was able to dress nicely and go to church, chat with friends and draw encouragement from church members who took the time to thank me for my writing and even a family friend / deacon who always notices when I make it to church, and as he is aware of the challenges of my disease, will say to me affirmingly, "Nice to see you vertical!"

It is truly amazing sometimes, the amount of pain I can be in and still appear "normal." Ankylosing Spondylitis, especially if the patient does not use a walker, cane, or wheelchair to get around, and is not yet fused into a curved, stooped position, is truly an invisible illness. I look normal, but inside inflammation rages through my spine and joints and I experience the pain others can't see.

One normal day for others is like a marathon for me. I am so tired and being out and about tires me with systematic efficiency -- draining me of energy and pumping up my pain levels. Something as routine and simple for most people as grocery shopping, can leave me too exhausted to speak, feverish, and in severe pain.

It's really frustrating that people can't understand. It's awful to think that people around me may think I am making this up, faking it, or that my pain is really just some mild aching.

Pre-diagnosis, I enjoyed an outdoor walking routine. Never one to enjoy exercise or athletics, I discovered walking offered many positive benefits: increased energy, decreased stress and anxiety, improved posture. I loved my "artful walks" -- enjoying the skyline, backdrop of pastel sunsets to black tree silhouettes, music in my ears thanks to my MP3 player, fresh air, and the scent of laundry detergent from neighbors doing their laundry. Sometimes I paused to capture one of these images with a camera, or to jot down a snippet of a sentence in a notebook. Inspiration was all around.

I became unable to continue my walks about a year ago -- three months before I was diagnosed. The walks caused a spike in the pain and limping, and elevated my low-grade fevers.

This week I determined to try again. According to Arthritis Today magazine, walking is an excellent form of exercise for arthritis. Walking lubricates the joints, releases pain-fighting chemicals... It sounded great to me.

The first day I walked 1.5 miles, divided into two walks.

It was wonderful! I was back to my old routine. The beautiful afternoon or pre-sunset skies, the fresh air, the drifting laundry scent hovering in my neighborhood right along with a very real sense of hope. I was strong, I would prevail, and I would show Ankylosing Spondylitis who was in control!

The next day I went out again for another 0.75 miles. Not that far. The walk increased my spinal pain, and by the end I had knee and hip soreness. Oh well, I mused, I was strong and I would walk through it and soon I would be better.

By the end of the next day I could barely gimp through my tiny house, my hip on fire with inflammation, the ligaments and muscles that support the joint feeling pulled and bruised.

My spirits and hope sank.

What if I wouldn't be able to reclaim my walks? What if walking for exercise aggravated my hip joints to the point that it claimed the ability to walk even the small bits I need to maintain my life? I just don't know what the future holds for me with this disease. I don't know if I may be one who needs to have hip replacement surgery, or ends up in a wheelchair.

I'm 32 years old. I'm not prepared to choose a cane or use a wheelchair for trips to the zoo or the mall.

It's a very isolating sense of worry; a very isolating pain. I thank everyone in my life who takes me at my word when I say I am exhausted or in severe pain, even when I "look normal" and am smiling.

So while I take a day or two off from my walking and turn to research to try to find the answers to my questions, I cast out the proverbial net and pull in my thrashing, fighting hope, and know that tomorrow may be better than today.

I will keep fighting to find the balance.