Broken in Aspen. Again



One hundred thirty-nine days since my last surgery.

Seventy-two days since my last plasmapheresis treatment.

Just like that. It happens. I fall in love with life again. I make plans. I start to reclaim lost pieces of being the wife and mother I want to be. I slowly fill my calendar with seeing friends and family. I make appointments for normal things I’ve neglected like taking Twix to the vet and getting the girls and I to the dentist. I reschedule overdue things I’ve cancelled again and again like my bone scan and mammogram. I push off appointments that might throw gasoline on even an ember of the need for more medical intervention. I move my Dr. Henderson appointment to check fusion to the end of April. I call Danica’s orthopedic surgeon and get permission to move her big scan and evaluation from this month until October which will be her five year mark. I book a beach house for the last week of May, because we haven’t been since 2009, and it matters more than just about anything to our family. I buy summer concert tickets on the lawn at Blossom for Dan and I. I book a hotel and make plans with my girlfriends to go to The Country Living Fair in September.

Two years ago I made a list of 40 things I wanted to do before I turn 40 in November.

This is the year. I’m sure of it.

I’ve been waiting for today. The temperatures are rising. The snow is melting enough I can see patches of earth. The sun is shining. I made it through a brutal winter without a shunt revision. I’ve had the most days out of bed and without a headache. I’ve allowed myself to dream. I have fourteen chapters of the book written. I’ve let little inklings of what God might have me do after “Gauntlet” sneak out to people I trust with my hopes. I’ve let my girls and my husband hear me talking about possibilities again.

This is definitely the year.

Without warning something snaps.

I should be used to it by now. The surgery or treatment that eases some kind of pain or symptoms lulls me into thinking maybe this will be the one that changes my body for good. Everything I know about Ehlers-Danlos and all the other conditions it drags along with it flies in the face of this ludicrous optimism. Still, without it I would have given up long ago.

When the popping and neck pain began in Tucson I explained it away as plane rides, hotel pillows and the strain of showering, shaving my legs and styling my hair every day. I returned to insanely cold weather and pressure systems. It was crushing me, but some kind of high from our vacation kept nudging me out of bed and moving forward. My inner voice told me to lay off the treadmill, let someone else clean my house and have Dan carry the groceries. I naively thought if I didn’t do anything stupid I would get through this.

It’s not just my spine slipping. It’s everything all at once. My mast cell reactions are getting closer together and more severe. I went to a friend’s birthday party Friday night and the candles made me so ill I spent all Saturday in the bathroom like I had the stomach flu. My cardiac symptoms and POTS, so controlled in Arizona I actually had days I did not take my medications, are flared again. When I stand up I get dizzy and feel my blood pressure drop and my feet turn dark purple. My heart literally hurts. My joints are screaming and the pulling between my shoulder blades is like the craziest tug of war burn. My headaches are from all over. The ones from my neck and base of my skull buzz all the way to the top of my head. The pressure is like someone is blowing into a balloon that will explode with one more puff. My hearing goes out if I move my head to the right or left or bend over. I am twitching again. It’s like little electrical impulses randomly shocking me. It is all a vicious cycle.

I’ve been faking it some. I’ve been hinting to those closest to me something is definitely wrong, but the tan is a little deceiving, and I love people who have invested so much in my fight to be more well actually thinking I really am more well. I have been driving even though it hurts me more than almost anything else. I also spent almost twenty-four hours this past weekend on my laptop working on the book. I was sick, and I could not sleep so I kept working. The emotions I uncovered during the chapters I wrote were overwhelming. When I returned home Monday I broke down. I told Dan the truth. I cried. I raged. When it was all said and done Dan rolled over into the fetal position, and I tried to pray.

Last night Dan came home, and I was already in bed. By eight o’clock he was beside me. I pitched another fit. I cried. I raged. Dan reached out his hand to hold my snotty one. We prayed. “God, please, just make it stop. We know You could make this stop.”

Today I cancelled my counseling appointment so I wouldn’t have to drive. I stayed off the computer except to go back and read the chapters I wrote over the weekend. I took Valium for my spasms. (I refuse to take a pain pill, because that is one step down a road I can’t admit we are on yet.) I prayed in fits and starts. How could I have so much faith and so much hope through so many years of suffering and then dig my heels in at this new development?

I’m not speaking much truth tonight.
I’m in stage one.
I’m sad.
I’m mad.
I’m desperate.

I put on my Aspen collar this morning to try and stabilize my neck.
I passed myself in the mirror, and it took my breath away.
I am broken.

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3 Comments on Broken in Aspen. Again

  1. Melissa Hall
    March 12, 2015 at 2:46 am (9 years ago)

    Monica I am so sorry. My prayers and tears are with you.

    You wrote “How could I have so much faith and so much hope through so many years of suffering and then dig my heels in at this new development?” It was a much bigger drop this time, I assume. It is OK to grieve what we have lost (again) and fear what may come (again) but you will get back up (again).

    Enjoy your tan. Hoard your spoons. Keep that smile. I’m so sorry you feel broken. I think you are amazing. No. I know you are. <3

  2. Gina W.
    March 13, 2015 at 2:29 am (9 years ago)

    Holding you close in my prayers. May God bring you His Perfect Peace through it all.


    Gina <3


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