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.

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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.

Blue Bully Breaker: Autism Awareness and Compassion

Our daughters (and many of my students) inspire my husband and I every day.  As we’ve survived to adulthood, you realize growing up is a challenge for everyone. It’s hard when you fall in that average range of kiddo and even more difficult if you are an outlier. Add in a culture dominated by instant gratification, instant notification, and a lack of face to face connection, growing up can downright suck, because “normal” seems to change more frequently. When you had the swirling cultural changes and having a diagnosis of something (like Autism, ADHD, or a medical condition), growing up almost seems deadly. April is Autism Awareness Month which touches our family through our beautiful daughters, but also through my work as a special education teacher.

What does it mean to figure out the world when you’ve also got some diagnosis of being different hanging over you like a bloated cloud?

This is how it feels to be our 11-year-old daughter many days. 20180326_185258_HDRShe holds it all together to fit her puzzle piece into the public-school institution puzzle, then the community puzzle, the friendship puzzle, the family puzzle, etc. The list goes on. But these are the ones she has to consciously flip rotate and push her puzzle piece into daily.

But you know what’s cool? She’s broken down some of these institutions into manageable pieces that work with her personality and gifts. She’s created a community for herself at her elementary school. She’s got a BFF.

Zoey before Court WarmingWhat inspires me about our other daughter, Zoey, is her ability to stand up for her convictions and stay true to herself. She fights for her friends, she’s loyal, and fun. Because of her beautiful personality, inner convictions and faith, she exudes a classic beauty. Check her out before homecoming this year.

Now it’s your turn to be inspired by the many with ASD (Autism Spectrum Disorder) in our communities who carve out a life in this cult-of-personality ridden culture. Check out how my local middle school is spreading compassion:

This month our school community has embraced not only educating our immediate school community about autism, but also how being a culture of compassion, kindness and courtesy is a game changer for the success of anyone (students and staff and parents) in middle school. Knowledge can lead to power to break the cycle of bullying.

During spring break a small group of students and staff placed kindness inspired post-it notes on lockers, bathroom mirrors and walls in the halls of MRMS. Check it out on the MRMSHuskies twitter feed.

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And as a staff, we support and remind with solidarity in #LightItUpBlue. It opens the lines of communication for real sharing and listening with a result of understanding and accepting each other.

Staff Light It up Blue

Here’s the wonderful staff I get to call my work family supporting #AutismAwareness at #MRMSHuskies #WeAreBSSD

Yesterday, Monday, April 2, 2018, started off Autism Awareness month with World Autism Awareness Day. These examples are the ways the #LightItUpBlue campaign can break the cycle of bullying. Let your Blue Light shine and overcome the social narrative of isolation, bullying and hatred that dominates opinions of tweens, teens and their use of social media. #UseItForGood

I want to challenge you to really follow through celebrating compassion through the month of April. Don’t let your enthusiasm dwindle by the middle of the month and sizzle out by April 30th. By focusing on compassion, you make it about Autism Awareness and more. Learn about autism. Share about autism. Open up the conversation. Make the connections.

Just remember Autism is not who that person is. It’s a way to describe some of the attributes of a person. Just like I have Cushing’s Disease. My characteristics of having a round face, brittle bones, among others do not make me Crystal. They are just characteristics that can accompany this diagnosis. They add color to my life’s story I’m writing. My daughters are not autism. They are human beings with keen senses. Visual gifts to be artists. Allyson has above average reflexes and vision that allow her to catch the tiniest of frogs out of the miry mud surrounding my parents’ pond. Zoey has a love for and deep understanding of pets.

What are you doing to further compassion and awareness? How have you been touched by autism? Leave comments below. Let’s start a conversation and connection. Let’s spread compassion.

Thanks for reading and replying! Happy Spring

-Crystal

P.S. If you want to do some reading, these are some works of fiction I recommend (These are some books I’ve highlighted before. I feel it doesn’t hurt to remind and reread them.)

Books to read (all of these are fairly family-friendly, if read together.)

For the younger crowd:

A Friend Like Simon by Kate Gaynot

Al Capone Does My Shirts by Gennifer Choldenko

Counting by 7s (Kindle Version) by Holly Goldberg Sloan

My Friend with Autism: A Coloring Book for Peers and SiblingsMy Friend with Autism by Beverly Bishop

Rules Rules by Cynthia Lord

For the older crowd:

House Rules: A Novel House Rules by Jodi Picoult

The Curious Incident of the Dog in the Night-Time The Curious Incident of the Dog in the Night-Time by Mark Haddon

 

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?