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Consumption

I’m not sure if it’s dealing with a cold/flu on top of all of my other symptoms or if it’s just having been sick for so long, but I’m so tired of feeling terrible. I’m tired of everything in my life revolving around how I feel. I’m tired of having to weigh how I feel against what activity I want to do or what chore I need to get done.  I’m tired of watching my life go by and not getting to be a part of it.  I want to wake up before my kids in the morning.  I want to have the energy to take a shower and make dinner in the same day.  I want the constant headache, nausea, dizziness, and pain to go away.  I want my circadian rythym to be back to normal so it’s not excruciating to get up in the morning and I’m not wide awake when everyone else is sleeping.  I don’t want to be disabled by fatigue.  I don’t want the first thing I think of to post as a status update on facebook to be related to how crummy I feel.  I want to be a partner to my husband instead of feeling like a burden.  I want to play and ride bikes with my kids.  I want to feel normal, not portion out every step of my day so that I don’t run out of energy before I run out of daylight. 

I’m scared that it will just keep getting harder and harder to get by every day.  I’m scared that I’ll lose all my friends because I can’t connect with them the way I want when I spend so much time in bed.  I’m scared I’ll forget something really important.  I’m scared that I’m going to use up the little bit of fight I have left to go to ANOTHER doctor and still not have a treatable diagnosis or any real answers.  I’m scared that the only memories my kids will have of me will be of me sick.  I’m scared that my marriage will suffer. 

I’m scared that this new doctor will find that I have a tumor on my pituitary in my brain…and I’m scared that he won’t.  I’m scared that I’ll have to have brain surgery and I’m scared that my body will react poorly the way it did the last time I had surgery.

I’ve been battling this dis-ease for over 4 years now.  I struggle EVERY day with how I feel.  Lately I feel like I can’t cope and “get by” like I used to.  Now I’m being referred to the 8th doctor I’ve seen for these same symptoms for even more tests, appointments, pills, and with diagnosis comes surgery.  Dr. L is a neuroendocrinologist at Swedish and the new diagnosis that is being considered is Cushing’s.  The good news is that he seems to be the expert on this condition.  People fly out here from all over the country to see him and he has determined the best testing route to get solid answers on an illness that is very rare and hard to diagnose. 

Quick Synopsis:  In Cushing’s, basically, there is an overproduction of cortisol in the body.  When the amount of cortisol in the blood is adequate, the hypothalamus and pituitary release less CRH and ACTH. This ensures that the amount of cortisol released by the adrenal glands is precisely balanced to meet the body’s daily needs. However, if something goes wrong with the adrenals or their regulating switches in the pituitary gland or the hypothalamus, cortisol production can go awry.

To everyone I love…I’m still here.  I still love you.  I wish I felt better so that I could be more involved in your lives.  I’m working as hard as I can to figure this out and I hope you’ll all still be around once I do.  Until then, please bear with me.  I will tell you if I don’t feel up to something and I will tell you when I need to rest.  Just know that if you come by unannounced, I might be in bed.  And I might be in my jammies.  Unless it’s after midnight.  😉

I’m A Spoonie

spoon_NorproWhat do you think of when I say SPOON?

An 80’s Valley Girl… “Gag me with a spoon!”
Mary Poppins… “A spoonful of sugar!”
A truck stop diner… “The Greasy Spoon.”
Soundgarden’s classic song… “Spoonman.”
Snuggling with your honey… “Baby, let’s spoon!” A friend of mine shared an article that she found which sums up how I’ve been feeling lately.  You can read the full article here:  But You Don’t Look Sick  Basically, it describes the life of someone with a chronic illness.  It lays out an analogy using spoons to measure how much energy you have each day and how easily you can use up that energy.  It describes how little things that you never used to think about (like taking a shower AND doing your hair, making dinner, etc.) can become huge obstacles. 

This week, I ripped through all of my spoons on Tuesday and Wednesday trying to juggle 5 kids and all the rescheduling from the previous week’s snow days.  It took more energy than what I had reserved so I borrowed spoons from Thursday and Friday to get it all done.  This means that on Thursday I snuggled in bed next to Corbin and slept while he watched movies beside me.  I had to sleep sitting upright because lying supine put too much pressure on my hips.  I felt drugged-I was so tired.  And today every joint in my body aches.  I feel like the Tin Man’s little sister.  Not because I’m missing my heart, but because I’ve rusted solid.  I feel like I’m dragging anvils lashed to my arms, legs, fingers, and shoulders. 

My heart breaks for the time this takes away from my family.  My kids don’t understand why mommy can play, and move, and cook, and organize, and have energy on one day, but not the next.  It’s hard for my hubby to understand that by the time he gets home, I’ve already been forced to use up all my spoons just taking care of the kids.  And, I’m sure, it’s even harder to have worked all day long and have to pick up so much slack because I’m feeling so crummy.  So I shared the Spoon article with him today and I think it helped to paint a better picture of my current physical condition.  I think he realized that I’m not picking and choosing when I feel good, that I don’t have control of when or how hard the fatigue bashes me over the head like a giant sledge hammer.  And that I wish I had more to give…especially to him. 

When I was talking about taking Tatyana to wrestling in the morning, he asked me how I would have enough spoons to get up at 6am and drive her to the high school.  I know it sounds weird, but that quick question was so good for my heart.  To hear that he understands better than anyone can from the sidelines and that he wants me to have as many spoons as I can each day really affirmed his love for me.  When we spoke our vows, promising to love each other “in sickness and in health”, I honestly expected that we’d spend most of our marriage in the latter half of that commitment.  And while it means the world to me that he will stand by me, even when I’m utterly spoonless, my hope is to find answers, regain my previous vigor, and to heal so that my life is, once again, overflowing with spoons…so many that I forget to even count them anymore.

Memory Monday

Better late than never thanks to the power outage.

Lately I’ve been feeling like I’m on some kind of punk show called Brains Behaving Badly.  It’s worse than pregnancy brain…at least I think so, I can’t really remember.  😉  I’m used to being sharp and on point, not having to write everything down and describe the meaning of a word I’m trying to recall while telling a story.  I jumble my words up, put things away in wrong places, forget names of people I’ve known for years, forget where I left things, forget words I’m sure are on the tip of my brain. 

Mostly I’m just forgetting things…mostly insignificant things. Don’t get me wrong, I haven’t lost a kid or anything, but it’s still pretty frustrating trying to navigate this brain-fog.  So I’ve decided that since I’ve started this blog, I’ll spend Mondays delving into my childhood as well as the not so distant past; a calisthenics regimen of sorts for my brain.  Hmmm, maybe I’ll start a new craze and make a million bucks…Mental Zumba! 😉  Anyway, I hope you enjoy my “workout” down memory lane…

Favorite Clay Family Vacations
I’ll admit that I looked through our shot glass collection to “jog” (get it?) my memory of some of these.

10. Great Wolf Lodge with Ike and 5 Kids
This was a fun trip, but I’m glad we had a discount through Ike’s work.  We only stayed one night, but that allowed us to play in the waterpark for 2 days and that seemed like plenty of splashy-goodness.  Corbin did NOT like the giant bucket of water that dumped out every 5 minutes and the waves in the wave pool scared him.  He did try the kiddie slides in the Tadpole Pond once, but decided he didn’t like that either because they were too close to the bucket.  The big kids and I had fun on the scarier slides, but I would suggest that you ask to be facing forward on your first time down the Howlin’ Tornado…especially if you’re the heaviest on the raft, lol!  🙂

9. Portland with Ike
Ike and I took a romantic, and kidless, trip together for the mash-up that is my birthday/Valentine’s Day.  We scored a great room at the Hilton through Hotwire…you know the site that only tells you the number of stars the hotel has until you book the deal you choose.  Our romantic candlelit dinner for 2 included raw oysters and after much hemming and hawing, I agreed to gag one down.  I spent most of the next day alternating hanging my head over the hotel toilet and sleeping while Ike (who ate them too, but was gratefully unaffected) played Gamecube and watched movies.  But once I felt better, we walked around downtown Portland and then took a drive down to Cannon Beach where Isaac captured one of my favorite pictures of myself.  While this may not seem like it should make the list, it was one of our first trips on our own after we had Emmi and with 3 kids, 4 and under, we needed some time away to remember that we weren’t just diaper-changing zombies.

8. Camping at Kopachuck with Ike & 5 Kids
I LOVE to camp.  There is something about sleeping in a tent, watching the campfire flicker, and spending time in the woods that is so relaxing to me.  We spent this last-weekend-before-school trip hiking trails that we hadn’t ever explored on our numerous day trips.  We also paddled around in the bay on our blow-up raft.  We all were hoping we could go explore Deadman’s Island, but there were just too many big boats and too much wind to make it there without an engine.  The kids beat us at Apples to Apples and we giggled through another round of Telestrations.  I also realized I’m getting better and better at judging how much food to pack.  We came home with an almost-empty cooler and just a few non-perishables in a bag.  Plus, Giant Baby learned how to upload pictures to Facebook from my phone.  🙂

7. Astoria with Ike & 3 Kids
When I was about 6mos pregnant with Corbin, we took the kids to Astoria.  We visited all the famous landmarks from Kindergarten Cop and the Goonies movies. We rode the trolley through town, visiting many kid-friendly museums, shops, and nearly sinking docks full of sea lions.  The kids and Ike tromped up 164 stairs of the Astoria Column while I happily stayed below to catch their balsa wood gliders.  Despite my presence, a teenage girl snatched Emmi’s wooden plane and ran off with it (insert angry pregnant mom eyeballs here).  We took them to Cannon Beach to play in the sand and get their first glimpse of Haystack Rock…one of my favorite places in the world.  We played at all the amusement stops on the Promenade at Seaside. And we ended with another side trip to Long Beach where the kids drove go karts (Emmi with her Daddy).  We all laughed as Braedan waved and promptly passed the flagger telling him his turn was done.

6. Chelan/Orondo with Ike & 5 Kids
This was our first trip as a family after we added Tatyana to our brood.  We won the trip at the Palate of the Plateau auction for Young Life.  We lodged for a week in a beautiful house and made good use of the included access to the country club pool.  We took Corbin on his first waterslide (and he LOVED it) and the big kids were blissfully tired after a full day of aquatic fun.  My parents joined us midweek for the Grand Coulee Dam tour.  And, yes, I think we all giggled once or twice about taking the dam tour.  😉  We rented a boat and took the kids tubing on Banks Lake and then stayed for the laser light show on the dam.  On our way back to Chelan, we witnessed the most amazing lightning storm and actually pulled over for a bit to watch the beauty on display.  Ethan told us that God put on a better light show than the we ever could have seen at the dam.  🙂

5. Long Beach, WA with Ike
“Baby moons” — one last trip as a couple before the baby arrives — are being enjoyed by more and more expectant couples. But what about a “fertile moon?”  After Eden was stillborn, it took some time before we knew that we wanted another baby.  And with 3 kids in the house at the time, we wanted some private time alone.  Ike surprised me with a guided history tour in an antique carriage through town and we spent hours sitting on the beach listening to the waves crash wildly on the shore.  The beautiful ocean – view hotel room featured a large jetted tub with shuttered windows that allowed you to see the ocean through the sliding door on the balcony.  It was very romantic, but apparently we weren’t the only ones with that idea.  Let’s just say that the floors were hardwood and not very thick and the couple in the room above us had a very enjoyable weekend too.  😉  We found out just a couple of weeks later that we were expecting Corbin!!!

4. Florence & Newport Oregon with Ike & 4 Kids
 When we arrived for check-in at our budget hotel, the last thing I could imagine was actually staying there.  It was a filthy yuck-fest of a room, circa 1974.  Corbin was just a month out from kidney surgery and newly crawling.  I just wasn’t willing to take the risk of him getting sick.  I was able to get our deposit refunded and we drove around looking for another place to stay.  We found a casino near by and booked a beautiful and hygienic room for less than the budget motel’s price!!!!  That certainly made the 6+ hour drive worth it.  Our many adventures included a speedy race across the sand dunes, exploring the Sea Lion caves, braving the Passage of the Deep shark tunnels, scaring our kids at the Wax Museum and Ripley’s 😉 , and of course, playing on the beach.   Plus, I got to tell my kids about how I had gone there with my family as a kid and we had tried to sled down the dunes on cardboard and nearly peed our pants when my Dad tried to show us how. 🙂

3. Victoria Canada with Ike
I went to Victoria with my 8th grade class…that trip doesn’t even compare.  Ike and I took the Clipper Ship and enjoyed a long weekend alone.  We toured the Craigdarroch Castle, walked the jetty to the mini lighthouse, spent time on the beach listening to the lapping waves, visited the Royal BC Museum, sipped tea in the Gold Level Lounge and relaxed in the Willow Stream Spa at the Fairmont Empress Hotel, explored the shops in downtown Victoria, walked through the Butterfly Gardens, and spent 5 hours strolling through the gorgeous floral masterpieces of Butchart Gardens where I took a gazillion pictures.  It was luxurious and relaxing and we both loved spending such special time together. 

 2. Disneyland Christmas Present with Ike & 5 Kids
I cried tears of happiness when my kids opened the giant box filled with balloons and tickets to Disneyland.  It was so cool to watch their confused expressions build into excitement.  Having been to Disneyland when I was 13, I thought I knew what to expect when we planned our surprise Disney trip (thanks to the generosity of some wonderful people).  But as we arrived at the happiest place on earth, my heart felt like it was bursting with sunbeams.  It was an entirely different place seen through my children’s eyes.  I loved knowing that their first time seeing Mickey was with me.  The trip culminated with the amazing fireworks display watched through the tears in my eyes and a lump of joy in my throat.

(On this trip we also enjoyed the Winchester Mansion, Queen Mary, Golden Gate Bridge, Longbeach Aquarium, Legoland, and the Hollywood Wax Museum/Ripley’s Museum.  In that order, lol!) 
 
1. Ocean Shores with Ike
It was one of our first vacations on our own as a couple, BC (before children).  We had so much fun riding horses in the sand, putting around town on mopeds, playing miniature golf, racing go-karts, and relaxing on the beach.  I took tons of pictures during each of our adventures with my handy-dandy 35mm camera on a brand new roll of 24 exposure film.  Or so I thought.  When the counter hit 28 I paused and thought that maybe I had actually bought a 36 exposure roll.  But when it hit 37 I knew something was wrong.  CRAP!  I hadn’t actually loaded the film into the camera!  All those photo-ops of the two of us smitten with each other; all the documentation of our amazing time together dissolved into the sea mist.  Instead of sulking about my blunder, we spent the last day racing to revisit every location where we had previously taken pictures.  We’d hop out of the car, snap cheesy photos of each other in front of the seaside establishments or their billboards, then hastily hop back in the car and zoom off toward the next stop.  We wondered what people preparing to ride off on the mopeds or gallop away on the horses thought of us, frantically snapping shots like paparazzi.  I still giggle when I think about this trip.
 
I wonder if this counts towards my weekly workout goal?  🙂

Reflection

I have been feeling drowned with fatigue and struggling to cope with the tasks of my daily life because of it for quite some time. Granted I have 5 kids in 3 schools with busy schedules and that can be a lot to manage when I’m at the top of my game. Some days are better than others and I feel like myself again, easily multi-tasking motherhood and enjoying life.  Other days I feel lucky if I’ve had a shower, done a chore, and no one’s been lost in the shuffle.  😉   In retrospect, I’ve been water-boarded by this feeling in varying degrees since Eden was born. 

A month ago, after another severe flare and feeling like I had the flu, I went again in search of answers.  I visited the general practitioner just to quickly rule out something contagious.  After getting the usual assumptions of thyroid, blood pressure, diabetes, etc. and passing each test with flying colors, the doctor was sure it was a virus similar to Mono because of my elevated liver enzymes.  

Two weeks, my usual doctor, and 3 vials of blood later, my naturopath called to say that she had run a Sed Rate Test and the result was high pointing to inflammation.  My Elevated Liver Enzyme results had doubled since my last test.  She also told me that my ANA Test results were positive and that based on the fatigue and my many other symptoms, she was pretty sure my diagnosis would be Lupus, a chronic Autoimmune Disease

Dr. Karen wants me to see a specialist to get a definite diagnosis.  So I’m in waiting mode until just before Christmas when I have my initial consultation with the Rheumatologist.  I’m proudly not scaring myself by scouring the internet for horror-stories, which can be easy to do in this age of technology.  I am gathering information so that I can make informed choices.  I’m preparing questions for the doctor and familiarizing myself with terminology and jargon so that I don’t need an interpreter to explain the conversation with Dr. J in December.

I was sitting in the Safeway parking lot when I took the call about my results, fat rain drops trickling on the windshield.  I had scrambled to gather up groceries and buckle Giant Baby into his carseat and I remember thinking the raindrops were symbolically welcoming tears.  But I wasn’t sad.  I felt vindicated.  I felt like all the symptoms I’ve had were finally being justified.  Finally, proof that I wasn’t going crazy.  That I wasn’t overly sensitive, make-believing sensations, or being a hypochondriac.  I’m not crazy!!! 

At least not about how my body feels and is behaving.   😉

Conception

CONCEPTION:

Something conceived in the mind. 
•a result of thought, e.g. an idea, invention, or plan 

Each moment of our lives is etched in the sand.  Beautiful for a time, but in this world, fleeting if not captured in some medium.

The truth is that most of us, within just a few generations, will merely be another branch on the family tree. We won’t be remembered by society because of an invention or discovery. We will not have a star on the walk-of-fame or be immortalized on the silver screen. We will not hit the winning home run of the World Series. And, hopefully, we won’t be infamous either. 😉 But each of us can leave the legacy of a lifetime of memories for our children. We can share reflections of adventures, lessons we’ve learned along the way, and the recollections of our journey.

I don’t have delusions of grandeur, hoping to create a huge following with a Lifetime movie of the week or daytime talk show in syndication.  I will consider it a success if I can reach 10 posts and I’m the sole reader.  🙂  My primary purpose here is to construct a written collection of memories, musings, ambitions, feelings, hopes, aspirations, and dreams.   Someday I hope that my children will enjoy sampling these tasty acorn-morsels adorning my ancestral bough.

And so this blog was born…

…with 9 more posts to follow 😉