5 Years Ago

5 years ago this month, i was pregnant with you

5 years ago this month, i craved mexican food

5 years ago this month, we were about to move from the home where you began

5 years ago this month, i was still nauseated

5 years ago this month, everything was going perfectly

5 years ago this month, we'd already chosen names for you

5 years ago this month, we'd already purchased your crib bedding

5 years ago this month, i knew nearly nothing about the many terms for losing a child

5 years ago this month, we didn't know yet that we'd never get to hold you

5 years ago next month, a lot of things changed forever

p.s. {if there was any doubt, i still miss you}

Sanctuary

Sometimes after my family is asleep, I sit on the floor in my kitchen with only a small light above the oven to write by. I brew a cup of tea and set it beside me and uncap my pen and write. I think in ink, it's the best way for me to get at my truest thoughts and that's where the insights hide.

Sometimes the rain pours down outside the back door and I can hear the music that falls in sheets.

When I really have things to say, or I know I need to process or heal or grieve or be completely without distraction, this is my little ritual. Without distractions, I can write 3-5 pages before I get so uncomfortable I can't take it anymore. There's just enough light that I'm not tempted to do something else; the range light over my stove is like a spotlight reminding me of where I am to be and what I am to be doing.

It's in these late-night, dimly-lit moments that the answers come. Sometimes no answers, just peace. Sometimes no peace, but relief.

Downshifting

I was thinking the other day of a perfect way to explain my current experience of illness and subsequent choice to simplify my life:

You know when you're driving along and you get to a hill, and if you stay in the gear you were in on flat ground, you won't be able to make it up the hill? So what do you do {those with a stick shift, like me}? You down shift. Flat ground and a higher gear worked fine, but trying to climb a hill? Forget it, you need to shift down.

So that's what I'm doing. Shifting down. Shifting down so I can make it up the hill.

I'm starting to have some better days. Less pain, or less stiffness in my joints. Not as exhausted. We should know soon how much my medication will help.

And bad day or good, I am loving this life of simplicity.

Baking, nesting, organizing, tea time, homeschool, laundry, journaling & creativity, oh how you feed me!

What's feeding you these days?

Simplify

I've been working on simplifying my life over the course of the last several months. I was diagnosed with a chronic health condition last week, and I simply can't keep up my usual life pace. The frustration is that I can't. The fun part is figuring out what's worth my time & energy. I'll tell you what's on the list so far:

YES

cuddling with my kids

journaling & creativity

homeschooling

baking

feathering the nest {although more feathers may be left out of place than before}

family time

NO

going out every day

attempting significant car trips alone

letting external stressors in the front door

guilt that i can't measure up to others' or my own previous standards

extras & unnecessaries

My energy is severely compromised. I can't be on my feet very long. I limp sometimes. I run fevers, which is the only type of running I do.

My life is going to look different now than it used to. So that's what I'm in the process of accepting. I'm also in the process of accepting that I'll possibly be in pain the majority of my life {for now, that's every day, but hopefully my new treatment plan will help}.

I'm going to have to make decisions about what I can manage, and what's not feasible.

I'll tell you what I will not cut: my daughters. They will know and feel that I love and adore them, and that I have what it takes to take good care of them. Even if that's all I can manage some days.

Diagnosis: Confirmed

I've been waiting for months to see the Rheumatologist, and finally, yesterday was the day. I was incredibly nervous and anxious. I just wanted a diagnosis, some answers as to why I've been so tired, feverish, stiff and in pain.

I was suspecting Ankylosing Spondylitis, which is a chronic inflammatory condition which attacks the joints, but can also effect many other parts of the body. It is an autoimmune disorder. In the United States it effects only about 0.5-1% of the population. It is similar in a lot of ways to Rheumatoid Arthritis, but RA generally effects the small joints of the hands and feet, and Ankylosing Spondylitis, AS, generally effects the large joints, such as spine, hips, neck & shoulders.

So 2:30 p.m. finally arrived on 9/22/10. Finally. I limped into the exam room.

My appointment was 2+ hours long. And at the end of it, the doctor confirmed the diagnosis I was expecting: Ankylosing Spondylitis.

I feel relieved and validated to finally know what's going on. I feel hopeful that we will find a treatment or combination of treatments that will improve my current quality of life. I feel concerned about the possibilities for the future. Possibilities like not being able to walk, needing a wheelchair or cane, having my joints fuse and losing range of motion.

But overall I feel relieved, because now we know for sure, and we can start trying treatments.

My wish is that by Christmas I'll feel much better.

...a little rain must fall

Be still sad heart and cease repining;

Behind the clouds the sun is shining,

Thy fate is the common fate of all,

Into each life a little rain must fall,

Some days must be dark and dreary.

Henry Wadsworth Longfellow

It's raining outside my open window. My back rests against a heating pad and cool air drifts in. I am still sick. It has been over four months now. Soon I'll be going to the specialist, and all I want is answers. Some people think a diagnosis is just a label, but that's never how I've felt; I think a diagnosis is a tool to help you find options.

I am homeschooling my 6 year-old this year, and we are having a great time learning and bonding. Little sister (3) is keeping busy with preschool skills such as coloring, painting, cutting, learning to write her name, her ABCs and 123s. My heart is very content with this decision. 

My health is challenging right now and there's a lot of uncertainty there. What is wrong, what are my options for treatment, will I get better or will I get worse, what will my future look like? With all of that, it is so wonderful to have made a decision we feel at peace with regarding our daughters' education this year. We're having such a good time baking, making art, learning about the solar system, writing, and doing all sorts of math. 

I'm simplifying my life as much as I can, and trying to learn what I can do without overdoing, what will help, and what I will have to pay for tomorrow. Not only do I have to walk slower, I have to live slower.

Journaling is helping me process my questions and fears, as well as keep track of my symptoms. I am thankful to have friends on this journey, so thank you for being here.

A Year Later...

It's been a year since I began this blog. I want to thank you for coming along for the ride, those of you who follow, and those of you who click over from the Facebook page.

Thanks to your support, hopefully a bit more positive thinking and inspiration is in the world. This blog has readers in the United States, Canada, Australia, Netherlands, India, Indonesia, and more.... The thought that my vision is traveling the planet in this small way thrills me.

So thank you again!