Project 365: Week 33

My week in pictures.

When I wasn't in the hospital, lying on the couch, or just too out of it, this is what happened...

I should have taken some food photos- many nice family members and co-workers brought us delicious meals during my first week of sick time at home. It was very helpful and appreciated. As it was, I captured...

First day of school

Trip to downtown Cincinnati to see our attorney

Dinner and visiting at my Dad's

 

Taking Time

It's been a week and a half since my doctor said, "no driving, no work". At that time he optimistically guessed at August 22nd (this coming Monday) as my return-to-work date. Just guessing. I knew in my heart that I wouldn't be ready. Really! I don't even start my new immuno-suppressive therapy until Tuesday! How was I supposed to recover in that amount of time?

So yesterday I calculated how much paid time off I have left, and called my boss. I told her, "Let's try for September 26th". I sighed; she sighed. I love my job and hate feeling like I'm leaving people high and dry, or like I'm abandoning the families I work with. I know it's not life or death, but I'm good at what I do and I provide a valuable service. (I work with kids with disabilities). After we hung up, I felt defeated and guilty.

But today I am feeling relief. I know I am not capable or working right now. I am dizzy, often nauseous, shaky, in pain, weak, and sometimes brain-fogged to the point of not being able to follow a conversation. With this longer time frame, my employer can make plans to change services for my kiddos. With this longer time frame, my meds will (hopefully) have time to start working and I can make the trip to Cleveland Clinic.

Taking time was the right decision. Even so, there is still ambiguity. There is a chance this new medicine won't work. We've already tried three different drugs in as many months. The chances are equally good that I could snap out of this flare within two weeks, or my condition will worsen and I may never work again. That's a big question mark, I know. But the question marks are part and parcel of having a rare, complicated, fluctuating disease.

For now, I need to use my time to relax, heal my body, and calm my mind. Taking time is good.

The Face of Prednisone- It Ain't Pretty
My Spoonie Mantra

Book Review: The Swan Thieves

The Swan Thieves by Elizabeth Kostova

My rating: 5 of 5 stars


A beautiful contrast between two painters: the madness of one in the modern day and the mystery surrounding one in the 1800's.

Kostova blends art, history, psychology and love story seamlessly in this tender and gripping novel. Robert, the disturbed painter, is seen through the eyes of two women who had tried to love him. The life of Beatrice, the 19th century artist, is discovered through private correspondence between her and her forbidden lover. Their stories are tied together by Andrew, the psychologist who finds himself wrapped up in Beatrice's mystery in order to help his patient, Robert.

Past and present, first-person narrative and antique letters: woven together, the characters are real and sympathetic, their stories ring true, and the reader finds herself frightened, angered, thrilled, hopeless, and uplifted, all at the right moments.



View all my reviews

Related articles

• Review: The Historian by Elizabeth Kostova (theeclecticreader.wordpress.com)

Book Review: The Curious Incident of the Dog in the Night-time

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

My rating: 4 of 5 stars


The title makes it sound like a mystery novel, and it kind of begins like one. What you really get instead is a sweet, honest story told from the point of view of a boy with high-functioning autism. The reader gets a peek inside his orderly mind, and learns how and why things stress him out. He conquers the sadness of a murdered dog, a lie about his mother, and a terrifying solo trip to London. His obviously messy home life is NOT so obvious to him- I think a companion novel told from the parents' point of view would be an incredible addition to this boy's story.



View all my reviews

The Face of Prednisone- It Ain't Pretty

When you have a chronic illness, sometimes the treatments are as bad as the disease itself. Take, for instance, my love/hate relationship with Prednisone, a steroid. When my autoimmune disease, Relapsing Polychondritis, flares up, one of the main drugs to treat the inflammation is Prednisone. In high doses. Side effects include hunger, night sweats, irritability (think roid rage), facial hair, weight gain, bloated abdomen and upper back/neck, elevated glucose levels, and moon face.

Ahh, moon face. People see your face first. And when it is puffed up on steroids, the change can be shocking.


This is what I looked like two months ago:

And now, after weeks of 60mg a day oral steroids and 3 1200mg IV infusions:

Like I said, shocking. People who haven't seen me in awhile stare. Sometimes they ask if I am pregnant. I had a verbal 2 1/2 year old client tell me I was getting fat. Sigh.

I know this will pass, but it's still a bitter pill to swallow. Be kind to moon faces!

Related articles

• Relief for Prednisone-Related Face Swelling (everydayhealth.com)
• Prednisone, A Blessing and A Curse (jenlynn401.wordpress.com)
• Mood Swings From Prednisone (everydayhealth.com)
• My Spoonie Mantra (reflectionsbyrebekah.blogspot.com)

Project 365: Week 31

Pretty boring week around here. Way too much time driving around for work and at the doctor's office/pharmacy.

The Bay- A Layout

Our local amusement park has a fun water area that is a favorite summer hangout.

 Supplies:
Paper: My Mind's Eye, Chatterbox, Bella Blvd.
Brads- My Mind's Eye
Fiskar's scissors
Alpha- Chatterbox
black Sharpie

Most supplies can be found at Scrap-tastic.

Sketch: Sketchy Thursdays (Feb 24)