Monday, May 11, 2015

The In's and Out's: May 7, 2015

Greetings from the big girl bed!  It's been heaven to curl up there to nap with the girls, or to extend bedtime songs curled up at their feet instead of on the floor.  It's what we've been doing lately.  Resting, staying quiet, soaking up each others' company.

Yeah, the pictures don't lie.  I've had a bad month of health symptoms, so if you're thinking my puffy October face is back, you're right.  So are the red, sleepy eyes, the bad skin, and lots of other things that were gradually going away.  Sigh....

 I've often said that the past year has been like living one of those diagnostic medical dramas.  This would be the part when everyone's high-fiving and the patient is being wheeled out in perfect health but you know it can't be over because you're only twenty minutes in to the episode.  Then all the old things go wrong again and maybe some new things and everyone scrambles to see what they might have missed...

I've got another round of specialist visits coming up in the next few weeks.  I'm on emergency standby lists. In the meantime, there is nothing I can do but rest and take impeccable care of myself.
It's been frustrating and discouraging to have a relapse.  I'm still apparently very susceptible to cortisol level fluctuation caused by pain or illness.  It started last month with a bout of stomach flu.  For three days I ate practically nothing and my meds and vitamins weren't absorbing correctly.  That brought my levels out of range.  Cue sleep symptoms and a sudden five pound weight gain.  Yeah, an illness that should have put me back in even more of my clothes put me back in my fat jeans.  That put more stress on my body and brought on my second bout of shingles in six months.

Shingles is NOT what you want to get when you are getting over Cushing's.  It's very painful, and pain increases cortisol.  Cortisol increases mean a return of all my symptoms: bad skin, upper body puffiness/weight gain, hypoglycemia, high resting heart rate, and high blood pressure.  Thankfully, I caught it super early because I've had it before, and was on antivirals mere hours later.  I didn't really even break out this time.  The nerve pain has been pretty significant, though, and being in pain makes my heart race, my hands and feet tremble, my blood sugar dip low, and my body scream for the sugar binge I refuse to give it because it would just bring on another crash.

The last few weeks have been pretty surreal.  I've been strongly cautioned to control my pain and not tough it out like I did last time.  My life is a schedule: the hours when I can take my pain meds, the hours I can't to make sure I'm safe to drive, the timer ringing telling me it's time to eat to keep my blood sugar stable.  I finish my lunch of raw vegetables, lean meat, and fat free dressing and my eye catches my reflection on a shiny kitchen surface.  I grimace in frustration and feel like throwing my fork at the wall. 
Two years in to this mysterious illness, I still expect to see this person, the one I remember from an era I am coming to refer to in my mind as "when I was still pretty."
 I'd like to look that way again, or at least closer to it than I do now with my puffy face and neck.  I'm thankful that this time I've at least been spared another round of dramatic hair loss and my regrowth is holding steady. I'd just like to look as happy as I feel.  I'm hopeful because I've been in a good place recently and therefore I should be able to get there again.  But the last month has not been fun.

So, I make myself a cup of coffee (half milk, small creamer) and do my Rhoda Janzen.

Today I am happy and grateful that I know why these upsetting things are happening to me.  It's not fun to be sick, but in the fall I was even worse and didn't even know it.  When low blood sugar drove me starving out of my bed to eat breakfast at 5 am I'd look at my rounding face in the mirror and call myself a pig.  When an early afternoon bout of fatigue made my body crave a nap I'd call myself lazy.  When my pain level would rise in the late afternoon and make me wince every time my children's joyful exuberance made them crash into my body that was already hurting I'd pray for more patience and call myself a bad mom.  It's so comforting to know that these are all lies I was believing and I don't have to waste my time on them any more.  I don't look in the mirror anymore and see tired and sad.  I see strong and brave and trying harder than I have ever tried at anything in my life.  Or even better, I don't look in the mirror at all.
Today I am happy and grateful for a support network here that knows what's going on with me and ready to help more if I get worse.  So far, my meals are prepped, my house is clean, my kids are coping well with Mommy's drug-induced naptimes thanks to the warm spring weather and the company of friends on playdates, and the lovely Miss Maddie and Miss Morgan step in and provide a welcome outlet for energy and games. My illness is proving to be a rather minor disruption in our lives.
Today I am happy and grateful for health.  Mommy isn't the only one who's in and out of the doctor recently.  The girls met with their new pediatrician, Dr. Sanchez, this week.  I've never had so much fun at the doctor.  The girls wanted their ears tickled, their bellies tickled, their tongues tickled.  They wanted to hold the lights, the stethoscope, the roll of exam paper.  Whew!
They're in perfect health, so strong and beautiful that it takes my breath away.  I'm so, so lucky.
Devon followed up a week later, and the visit was just as positive.  For him, the doctor was a very serious business.   Perfect health as well. 
 The after-party was when he could lighten up a little.
Today I am happy and grateful for friends.  What helps me most right now is to never feel like I have to do life alone.  And guess what? I don't!  It was much harder for me last year to reach out and try to make friends even though I was really struggling and felt like I didn't have much to offer anyone.  Thankfully, wonderful people have found me and are willing to tolerate the Cushings personality quirks because they know I am sick.  I have someone to talk to during the post-preschool pickup energy explosion. Friends come over for dinner and don't remark on my brain fog and late afternoon jitters.
I have a kind, thoughtful husband who steps in and fields the post-bedtime pleas for water, potty, fresh band-aids, and other necessaries that would bring me out of my chair about a hundred more times each night.  I even have another adult along on shopping day, just because it's more fun to go with someone.
Today I am happy and grateful that Devon and I can manage my illness together.  Devon is so, so sensitive to changes in my health.  When he can tell that Mommy is having a flare, he copes by giving me what helps him when he feels bad.  He spends every waking moment attached to my side, checking in with me constantly, asking for constant interaction, and giving me lots of rough touch and tickling.  Problem is, this can be overwhelming for someone moving slowly and struggling with chronic pain. 
This time we've been able to manage better, though there have been some bumps in the road.  My early morning waking habits have even given us time to work alone on our kindergarten prep skills.  Four a.m. last week saw Devon rising from the bed he was sent early to the previous evening.  This would be a problem, except that I was already up to eat and take a pain pill.  Grateful for the company, we sit companionably at the table and Devon traces letters for a Mother's Day card to send to Grammy.  He then signs his name. 

Devon: Huh-huh-H.  Eh-eh-E.  Ull-ull-L.  Hello!

Devon sounds out his first word in my presence.  We celebrate and wish Grammy a very fond hello. 
Today I am happy and grateful for life.  It really is sweet, despite the difficulties.  My pain is just pain.  I'm managing it.  I'm praying for others whose pain is real, a beautiful little boy that just had open heart surgery and a strong, sweet girl that just had back surgery.  My pain reminds me of them, especially because it's mainly in those two places: my rib cage and lower back.  It also meant that I was awake in their most critical hours during and after their surgeries.  I'd like to think I was taking some of their pain myself, and giving them some of my strength.  Not because I have it, but because they need it, too. 

No comments:

Post a Comment