Cushing’s at 5 weeks post op

(Disclaimer: Hi! Just a reminder, this is essential a diary/journal-type entry in my Cushing’s Disease recovery. It contains thoughts, complaints, pictures, etc. Cushing’s is rare and affects so few. For this reason, I wanted to put my journey out in hopes of helping others who might be going through this as well. I also do very little revision/editing to keep it authentic.)

The last two weeks have been about perspective and patience and strengthening my spirit in 2 Corinthians 4:13-18. It’s about the gratitude, the witness of a strong spirit despite physical suffering, and faith.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day… as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

2 Corinthians 4:16-18

Perspective practice #1: We are five and a half weeks into the remission/recovery phase of the surgery. Weight loss is still avoiding me, but I haven’t gained. (by this time, it could have been possible for me to gain another 30, 50, or 70 pounds). I think I see a difference in my face. I can see a more defined jawline coming out. What do you think? (I HATE smartphone cameras and selfies. I do much better at photos with a SLR.)

Here’s my face, but also some skin on my stomach where I had what I thought were stretchmarks, but it’s purple lines that show up as a result of the tumor.

These are my pre surgery/in hospital post surgery photos of my face and my skin on my stomach.


face six weeks2

skin pre surgery

skin at 6 weeks

Perspective practice #2: We saw the ENT on Wednesday. The sinus cavity and nasal passages look good. She says it’s healing nicely. She cleaned out more packing, estimating there’s only about 5% left up there. I am breathing better than prior to surgery and the sinus-type headaches have stopped.

Perspective #3: I’m getting to try out what it’s like to need and use the emergency dosing of hydrocortisone while still restricted on my activity level/work. This whole remission/recovery/regulation stuff seems like it could be more exact and efficient. So I had some stressors (Sick dog, news that Chris will need another stent in his pancreas, ENT follow up, sinus infection, tornado warning/bad weather) this week.

Perspective #4: While the fatigue has continued, its affects are wearing me out more. So, I make lists. Lists make me feel like my good ideas and intentions are active members of my family. Here are two from the last two weeks:

Things I still haven’t had enough energy to do: church, grocery shop, go for a walk around the block, work, any sort of project that requires sustained energy/focus, pull out the summer clothes and sort through them, and do any sort of spring cleaning (this may be the biggest disappointment out of them all).

Things I was able to do this week: eat out at Panera with my family, go for a ride with my parents around Lake Jacomo and Blue Springs Lake to enjoy the red bud trees and sunny warm weather, complete reading two manuscripts I am editing, finish reading two books, water my houseplants, sit outside on our patio and read, make meatballs for dinner one night, and make it to and from a doctor’s appointment.

This week marked that six-week post op when supposedly things flip. My physician’s assistant from the neuro office says she has had many patients say that at week six, it was like a switch was turned on and they felt much better. I would say I had moments where I felt somewhat normal (if I even know what that is), but I still have days where I cannot get out of bed and sleep most of the morning.

The Dressing Room

You’re going to try on clothes. You usually reserve that for home, preferring to use your mirror and your lighting to decide if something fits or looks good.

The dressing room has mirrors everywhere. You walk in greeted by a half octagon entry aligned with mirrors. In the stall, there are mirrors on every side. Even when the dressing room is adorned with a charming chandelier, the hippest paint colors and trendy wall décor, the lighting is harsh and the mirrors show the reflection of every nook and cranny. They highlight the parts of you that you are disgruntled with.

Failure. A broken pelvis isn’t a failure as we typically think of it, but can seem like it when you’ve fought hard to beat endometriosis and take care of yourself. Getting the x-ray and MRI results confirming two breaks in my pelvis, elicited more testing that told the story of severe osteoporosis. It was as if I was looking in the mirrors in the dressing room and seeing the dimples of fat and a pair of jeans that didn’t quite fit right.

Since then, many have asked how it happened. I thought up this great story about trying to perfect the longest ollie while taking up skate boarding over the summer to explain the break. It’s much more exciting than the truth: My bones gave up while I was waiting at the copier.

It has taken a long time to be even remotely independent in my daily life. No work for more than two months has been both a blessing and a hardship.

The time off and the fractures caused me to reflect and plan. What will life look like now? Things I had hoped to do one day, uncertain or outlawed. What does this mean for a future? Limits are put on activities. Surfing? Horseback riding?

Compression fractures.

Broken wrists

Broken femurs

A re-break in the pelvis.

These were like accessories to the wardrobe I’d been wearing. It’s been like trying on outfits you know you should wear, but don’t want to buy and walk out of the store with because they don’t fit your personality and dreams.

These forced choices to be made in changing my exercise routine, changing my diet/supplementation, and adding prescription medication, as I waited through the healing process. The continuation of this process is taking leaps of faith to pursue my dreams now and not wait for when the children are grown up or more independent, to wait for the financial security the world says I need for it to be a level-headed, responsible choice.

Ecclesiastes 3:11-12 “He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end. I know that there is nothing better for people than to be happy and to do good while they live.”

I’m beginning with putting my heart’s desires in the forefront again and creating a time and place to pursue them. Welcome to the journey with me. I would love to build a community of others who are choosing to carve out time for a dream, maybe one that our culture says is crazy and not worth pursuing.

My pursuits:

Writing every day on a project

Continuing my exercise/physical therapy changes

Blogging consistently

Completing the Iowa Writer’s Workshop online course

Tragedy, disappointment, strife, and pain allow us to know how to celebrate life nor live it fully. When was the last time you celebrated your life? When was the last time you gave yourself permission to live happily in the moment? What can you do to be true to your heart to allow life to come?