Thoughts over Coffee by the Sea

My husband says, when his black Americano turns out to be really bad; burnt, "Cream and sugar are the great equalizers."

And so it is with attitude and perspective -- they are great equalizers in a disease that is really bad and burning my joints through with fiery inflammation. Leave it alone and it's really bad, add the great equalizers of a good attitude and positivity and the cup of disease is drinkable.

If this disease is going to make things worse for me physically, I need it to make me better some other way, so I choose, everyday, to stay as positive as I can. To focus on the beauty of the present, wherever I can find it.

I may not be able to find any beauty in the fact that my mobility is adversely effected, so instead I focus on the sound of sea gulls calling, foghorns bellowing, the feel of hot sun on my aching back, that my hands work to use this pen, the cool breeze on my bare feet, the smell of salt in the sea air; that my view from this cafe's sidewalk is brilliant blue dynamic ocean, rippling and ever-changing with the blue sky reflecting off it, making shimmery silver areas of surface and tide. Puffy white clouds punctuate the sky like polka dots on indigo fabric. A planter box of blooming flowers grow in the midst of contrasting concrete.

I have a fever today and I'm tired and I had the option of staying home and taking a nap, but I chose to go out and sip a latte and see the ocean. When put like that, of course it sounds like an easy choice, but it's not always. Everyday there's at least once when I think, "I'm not sure I can do that." But everyday I say, "I'll try."


Reflections on An Evening in the Mist

It's sunset on a Wednesday evening in August, and I step out of a bookstore to wet mist and the aroma of sickeningly sweet salt water taffy. Inside the candy store, wood flooring greets my Mary Jane flats and I stick a quarter in an electric player piano and the whole store turns to look at me as jazzy bar tunes explode from the piano that is playing itself.

All of my senses are completely delighted.

It's like a welcome vacation from real life. Real life with disease and a painful joint condition. Real life with work and stress. Real life with laundry and dishes and dirty floors. Real life with insomnia and rough mornings.

This, right here and right now, can stay.

New books and comfy leggings and knit dresses and little girls holding hands with their daddy and player piano music in a candy store at sunset in a little coastal town one summer evening in the mist.


The Prophet and Pain

{Enjoying milk and stories yesterday on our little coastal excursion}
While I'm thankful for less pain today, I ache and can't get comfortable. The fatigue threatens to crush me. I was able to get a nap in {huge thanks to my husband of almost 8 years for taking the girls bike-riding so I could rest.}

Yesterday I read The Prophet for the first time. I found this section on Pain worth a second and third read, and I'm still pondering it:
Your pain is the breaking of the shell that encloses your understanding. Even as the stone of the fruit must break, that its heart may stand in the sun, so must you know pain. And could you keep your heart in wonder at the daily miracles of your life, your pain would not seem less wonderous than your joy; And you would accept the seasons of your heart, even as you have always accepted the seasons that pass over your fields. And that you would watch with serenity through the winters of your grief. Much of your pain is self-chosen. It is the bitter potion by which the physician within you heals your sick self. Therefore trust the physician, and drink his remedy in silence and tranquility: For his hand, though heavy and hard, is guided by the tender hand of the Unseen, And the cup he brings, though it burn your lips, has been fashioned of the clay which the Potter has moistened with His own Sacred tears."
Your comments and support, both here and on the FB page, are so appreciated. I sometimes find illness and pain isolating, and today I'm feeling that sense of disconnect. Thanks for being here.

Life These Days

I don't even know where to start with this post. I've been meaning to write an update. For those of you who follow this blog for journaling tips and inspiration, I hope you aren't too disappointed by the detour of late.

For those who have been wanting to know more about what's happening with my health, stick around.

I am feeling the same -- swollen, ill, flushed, my joints are stiff and cranky, my back hurts, my hips don't always work when I stand up and try to walk. I'm very, very tired.

I saw the doctor again this week, and she started me on thyroid medication and prescription vitamins with iron. I am hoping that treating my thyroid problem and anemia will perk me up some. But that's not looking like all of the problem.

The doctor thinks I have something called Ankylosing Spondylitis. You might not know how to even pronounce that, let alone know what it is. I have been saying those words since I was a little girl, and that's because my dad has it. Ankylosing Spondylitis (AS) is a chronic inflammatory disease that effects the joints, normally large ones such as spine, neck, shoulders, hips, and knees, and can effect many other parts of the body. It is an autoimmune condition, which basically means that the body thinks there's a foreign invader of some kind, and has sounded the alarm and sent out troops to attack and conquer the threat. The problem is, my body is attacking itself.

AS can be hereditary. I had some hip trouble in my teenage years, and throughout the years have had back pain here and there. During my younger daughter's pregnancy I had severe joint pain and had a lot of difficulty walking, dressing, climbing stairs, etc... In the last year or so, I began to have stiffness in my low back some mornings. I remember saying on my Facebook status one day that I needed WD-40 for my joints. A couple of people laughed, and a couple of {older than me} ladies said that I was too young for that. Ankylosing Spondylitis often begins in a person's early twenties, sometimes even in the teen years, but is almost always diagnosed before age 35. My dad was diagnosed just about the same age I am now.

I really began to be concerned last fall when I experienced my first "flare" of autoimmune symptoms. I had low grade fever, my low back was quite stiff and sore, I had pain in other joints, and weird puffiness that I had never experienced. I was, like now, very very tired.

Skip to now. This flare began in May and has not ended. I finally went and saw a doctor, had a physical exam, went over my history and my family history, and had labwork. There is a specific gene that is strongly associated with AS (90% of people with AS test positive for it). My test came back positive.

Given my symptoms, family history, and positive test result, it is quite likely that I have Ankylosing Spondylitis.

The rheumatologist I was scheduled to see could not get me in until late September. That felt so long from now. When I saw the doctor this week, she suggested she see if she could get me in to another rheumatologist sooner. She was able to do that, and now I will be seeing my new doctor late THIS month. I am relieved I don't have to wait so long now.

I asked the doctor this week if she thought I had Ankylosing Spondylitis, after she came into the exam room and spoke of little else. She looked at me and said, "I'd say it's pretty certain, dear."

So while I have not been diagnosed yet, I am prepared that that's what my diagnosis will be.

I am trying to learn how to adjust my life to include this condition. I have had to start resting in the late afternoons as much as I can, otherwise my back begins to throw a fit. The girls and I have started a new little ritual of climbing into the comfort of the couch together, with a heating pad behind my back, for at least an hour. Sometimes I read them stories, sometimes we watch a movie, sometimes I have to close my eyes for a while.

Mostly, I'm ok. But life is different already. I don't have any days that I feel "fine." I never know when I wake up what combination of symptoms will greet me. Today my mid-back was stiff for about an hour, and later my neck was stiff. I had a temp of 99.1 and felt flushed. As the day progressed so did my low back pain, and after a 20 minute drive down the coast, when I tried to get out of the car, I discovered that one of my hips had stiffened and didn't want to bend properly or support me. That's just today. Tomorrow it will likely look a little different.

I want to have a positive attitude that inspires people and doesn't weigh them down. I don't want the girls to only remember me ill and in pain. I don't want to have to slow my pace so that I can accomodate this foreign invader into my life.

Every day I try to be thankful that I can do everything I can do. I try to look for the hidden gifts. Things like cuddling little girls whose hair smells like coconut. Things like being given 20 kisses in rapid succession by my 3 year-old because she wants me to feel better.

And that's where I'm at right now... slowing down, being reintroduced to daily pain after thinking that chapter of my life was over, reframing my reality.
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