Monday, August 29, 2016

You Must Be Excited

For the past two weeks, wherever I've gone with children, people have commented to me, "You must be so excited for back to school!"

Yes. Yes I am.

When I mention we homeschool, I often get a look of pity. I think this look especially comes from people whose point is that I'll get to get rid of  a break from my children for a good portion of the day once school begins. I usually comment that I love spending time with my children. One man just could not believe that I was sincere...or that I could possibly enjoy spending all day with my children. A woman's response was, "really...even the teenagers?" Yes. Really. My teenagers rock.

Am I excited for back to school?

But perhaps not why you'd think.

As a homeschooling family, back to school means something a bit different. Back to school means kicking off the school year with a Beach Party! Why not? There are considerably less people at the beach at 10AM on a Friday while school's in session. We also look forward to less crowded museums, science centers, libraries, aquariums, movie theaters, and other places that we love to frequent during school hours. Homeschool co-op will soon be back in full swing, which is fun for our entire family. This session is looking amazing, with class offerings such as Painless Algebra, Robotics, Introduction to Improv, Project Management,  Knowing Your World, and Music & Mayhem.

The school year also brings opportunities to participate in lots of things that happen during the school year such as Tuesday Night Sunday School, Epoch Arts Haunted House, Epoch Arts Mini-Production, homeschool days at museums and science centers, St. Paul Puppet Academy, and so much more.

And it means my children will be missing their friends who attend school because they often don't get home until late afternoon or early evening...and then have homework.This is sometimes difficult for my always-homeschooled children to grasp, as they eagerly await their friends' arrivals home each day to either play with them in our neighborhood, or online for those who live to far away for after school get-togethers. 

Homeschooling has opened the world up to me and my children. I have learned more as a homeschool mom than I retained from all my years in school. I love learning along with my children, and nurturing their love of exploring the world around them, following their passions, and discovering things about themselves.

Tuesday, August 16, 2016

Not That Kind of Date

All I wanted was to surprise my husband with a quick movie date on a Sunday evening. 

What I wasn't expecting was to feel like I'd been run over by a house, and therefore find myself calling him to come home from work early as I figured out whether or not I needed to go to the Emergency Department.

Now, one would think that feeling like you've been run over by a house would automatically and immediately qualify you for a trip to the ER, but apparently my brain doesn't work that way. My brain decided that if I just laid down and rested for a while things would improve. Then laying down became excruciating. Sitting was worse. Standing was near impossible, and by the time my amazing husband was whisking me away to the hospital, I could barely walk.

Nurses and doctors ask a lot of questions. After going through my thought process ... most likely a UTI, but may also be kidney stones, and please check my liver as well, and a psoriatic arthritis flare to top it all off and make the pain a 5,436,723,027 on a scale of 1-10...they did a ton of bloodwork and other tests (no, I'm not pregnant) and hooked me up to IV fluids. Then they asked me if I'd ever had morphine. After the morphine and anti nausea drugs (did I mention I hadn't kept anything down all day?) were on board, I was still not feeling better. Morphine barely took the razor sharp edge off of the pain. They diagnosed me with a complex UTI, gave me three prescriptions, and sent me on my way.

I learned soon after arriving home that I don't get along well with oxycodone. It makes me super paranoid about ridiculous things and keeps me up most of the night obsessing and having near panic attacks over said things. Making things worse, not even the morphine oxycodone combo made the pain bearable enough to sleep. Finally exhaustion took over and I slept a bit.

The next day, I learned the the anti-nausea drug had the exact opposite effect than it was supposed to.

A little over a week later, the UTI is under control, my psoriatic arthritis is most definitely not. But that will come in time.

I've realized that this sort of thing happens around once a year. Somehow, some way, my pain gets out of control and I land in the ER. I'm thankful it's not more often than that. The thing is, with autoimmune liver disease, taking pain meds can be dangerous. My doctors cannot prescribe enough pain meds to adequately treat my pain, because if they did, it would put my liver at risk. Finding a balance is difficult, but essential. 

So, after a week spent mostly in bed, I'm getting back on my feet again, slowly, but surely. 

Eventually I may even get to go on that movie date with my husband...

Wednesday, August 3, 2016

True Life

Pain threatens to swallow me whole.

I'm so excited - so many things to look forward to!

It's a struggle to open my eyes each morning, sleep pulling me back into it's pain-dulling clutches. Gone are mornings of waking refreshed for the day ahead. Instead torturous sleep gives way to a fuzzy eyed shroud of pain that clings to me throughout the day.

Upon waking each morning, my mind is filled with the exciting things we have coming up! Epoch Arts Homeschool Co-op class proposals are pouring in for Autumn Semester. In a little over a month, I'll be heading to Camp Calumet for my first School of Lay Ministry retreat and after that, a homeschooler's beach day. I'm looking forward to Finn's baptism, a day at Old Sturbridge Village, and a quietish month before homeschool and other activities are back in full swing.

There is so much I want and need to do, but my energy is lacking and my pain levels are almost unbearable. Some days I can barely leave the relative comfort of my bed. I can see how people quickly become addicted to narcotics, as the one pill I'm able to take just takes the edge off, and it's so tempting to take two or three to get some real relief. I base what I do each day by the amount of pain I think I can cope with each night and still get some sort of sleep.

Our Autumn is looking amazing. Three children will be participating in Epoch Arts Haunted House "Creatures of the Night" and two in their Mini Production "Collide." I look forward to seeing what Beth has in store for the teens - and for me! - this time. Tuesday Night Sunday School and St. Paul Puppet Academy are both looking like they're going to provide wonderful faith-filled fun. And all activities that feed my soul and don't require vast amounts of energy on my part. 

Living with chronic illnesses and chronic pain consumes every moment of every day.

Thriving with chronic illness and chronic pain consumes every moment of my day.

Truly living life while coping with chronic pain and illness has more to do with perspective and balance than it has to do with how well I feel at any particular moment. I'm in pain every moment of every day, but, for the most part, it's my choice what impact that has on my life. For me, I'd rather be in pain and doing something I love than be in pain and wallowing in self pity. I do have my moments, and an occasional day spent in my pjs in bed, but that's not my life. 

My life is looking forward to doing amazing things,no matter how small. It is taking on things that feed my spirit and energize me. It is praying that this treatment, or the next, will rid me of some of this pain and exhaustion so that I can have a reprieve from the intense work of living in this body. It is living in hope, in service to others, and in gratitude for the wonderful things life has to offer.