Saturday, May 17, 2014

When Life Throws You an Unwelcome Detour

Words to Live By
Dawn is coming and I'm feeling reflective about the past several months. We got hit sideways again, doesn't that just happen to us all?

We learned a lot about things we didn't even want to know.

My beautiful daughter Jessica
In the summer of last year, my beautiful daughter Jess started to get sick with an illness that it took 8 months to get a diagnosis on. Gillain Barre (Miller Fisher syndrome). It took eight doctors and a million appointments to figure out what had brought her from a healthy, strong 26-year old woman to a 108 lb woman who couldn't see properly, couldn't eat, couldn't sleep, couldn't walk, couldn't take a shower by herself, couldn't drive, couldn't work, and was consumed with excruciating pain 24/7.

She dealt with an awesome number of medical appointments and tests for several months at her home in Portland as the sickness progressed, slowly stealing her independence and mobility. MRIs, ultrasounds, nerve conductivity tests ("Like being tazered, Mom," she said), blood tests, panels sent to the Mayo Clinic, 3 Lyme tests, two neurologists, two gastroenterologists, an OBGYN, two primary practitioners and a nutritionist working to rule out the "biggies" while they tried to pinpoint the cause.

Family!
We texted late into the nights when she couldn't sleep, and finally around November I started asking when I should come. Should I come and stay there with her or should I bring her here to State College where we could have her see our doctors and be able to take care of her? She was stubborn as an ox and downplayed the extent of her illness when we talked on the phone. But there were a few calls where I felt such urgency to go get her whether she liked it or not that I could hardly sleep. She would always say, "Just let me get through this next appointment, then you can come." Or "just let me get through this stuff at work, then you can come." Until one night (not the first time) she cried. And I put my foot down and said "We're coming." I'm so glad I did.

My Princess last summer
When we arrived my Jess was sitting outside on her porch waiting for us. We had the best hug in the world. We stayed just a little while because it was late, and arranged to come the next day to pack and take care of any details she needed to wind up. We didn't know how long she'd be away from her home. She took a medical leave from work.

Family!
While we were in Portland winding up details, my family was rallying to prepare for her arrival. My brother put a special hose thing in the shower and a special stool in the tub so she could take a sit-down shower. My mother bought gallons of Ensure - a protein drink since my daughter wasn't eating. My sister went shopping with me before we left to buy some soft clothing for her since all of her own clothes were too big and falling off.

I don't have photos of the airports - we had to arrange for a wheelchair for her at each one, and what we learned about the other travelers was both good and bad. Some elbowed us out of the way, while others gave us sunshine smiles that let us know they were familiar with the challenges of special needs. We stayed in hotels with handicap bathrooms and used the handicap stalls in restaurants. We learned about access and non-access. My heart was in my throat when she had to go through security, stand up and step into the x-ray booth - tears choked me up and I had to turn so she wouldn't see. She wore flip flops on her feet in below freezing weather because the pain was so bad she couldn't put on socks and shoes.

Love sent from her brother Torey
Once we got her home with us we started the long climb back to health and strength. Her brother sent lots of encouragement - a package from his home in South America - customized M&Ms which said "healing energy," "get well," "love," and other wonderful encouragements along with coffee/tea/hot chocolate mugs to cheer her.

Bill Paying
My wonderful husband helped her pay all her bills online and declared he'd never seen anyone so organized. Yay Jess for your great bookkeeping skills!

Sleeping and sleeping
Her biological Dad brought her a huge Snoopy which served as a soft pillow as she slept and slept and slept some more.

Creativity supports healing!
I bought her some mandala coloring books and colorful markers to help pass the time once she started feeling a bit better.

Getting ready to fix that owl
She never lost her sense of humor and grace. One night at dinner she got the plate with the owl design on it and declared the owl looked angry with his eyebrows painted the way they were, so she was going to fix them. We happened to be eating some gorgeous juicy pineapple slices, and she arranged them just so, over his eyebrows, which made him a very fuzzy looking sort of Hawaiian unangry owl.

Unangry owl
Happy Birthday my darling, and many more!
A few weeks after her arrival we celebrated her 26th birthday, and she made a heartfelt wish. May all her wishes come true xo.

Shake it off!
We're still working on shaking this thing off. It can take from 3 months to a year. She has to avoid vaccinations and eat as much organic food as possible. Exercise to build back the muscle that the sickness ravaged. Thank goodness for Penn State Sports Medicine's physical therapy. This week they had her on the treadmill, backwards and inclined uphill (slowly). They are miracle workers there, especially Jennifer Frasier. The BEST. Thank you Penn State and Rob for our insurance!! We've paid and paid the premiums for years, never knowing how important it would be. 

The treatment for Jessie's illness was an IGIV session that can cost from $8 - 15,000 dollars. Each IGIV treatment is made up of over a thousand blood donors, each one screened and tested for purity. It chases the bad antibodies out of the system, giving it time to recover. I am so very grateful to each and every one of those donors. I sent prayers to all of them to say thank you. You never know when you're on the table giving your blood who it might help - but know that there are many people out there who are ever so grateful.

How life should be
We never thought much, as we all went about our daily lives, about those who are facing huge challenges. We do now! We appreciate so very much about the little things, the big things, all the hours the specialist docs put into their educations, all the hours the handicap bathroom engineers put into their educations, all the hours the engineers put into accessibility through airports, hotels, restaurants, restrooms.... We appreciate the sunshine smiles from those who know and the conversations that we experienced with complete strangers who treated Jess with complete respect.

We forgave those who elbowed and shuffled to the front ahead of us. I wanted to smack them, really hard.

Ice pack footie shoes from Martin!
I have a freezer stocked with about six different kinds of ice packs cause for the first several weeks Jess kept them on her feet pretty much 24/7. Gillain Barre attacks the nerves, making them exposed so that the pain is such that you can't even put bedsheets over your skin. Especially in the feet. My sister's sweet husband Martin found some lovely soft sock type things that hold small ice packs over the top of the foot as well as underneath. Jess was loving the freedom of movement - you can't walk in them but you aren't trapped under one that has to lay just so over or under your feet. Thank you Martin!

The Princess becomes empowered again - yay!!
So now, after grappling with this illness for about 10 months, Jess is well on her way to a full recovery. She's got about six more weeks of physical therapy, a couple of doc appointments to check progress, and we're starting to talk about taking her back home to Portland. It will be hard in some ways to have her that far away from me, and she'll continue the attention to her body and diet to make sure she stays strong, but my heart will be with her, and we can TEXT. All. the. time.

There's a very long list of what we've learned as a result of this challenge. We've learned what's important. We've learned compassion, patience, faith, quality, generosity, companionship, creativity, strength, and so many other things it would take another post.

Happy Mommy
Thank you angels for all our blessings. Please stay with us as we continue to recover. Life is full of mystery and magic, which a girl should have a chance to discover for herself.

Namaste and special blessings to all facing challenges of any kind.

Jen


2 comments:

  1. I'm so glad I read this post filled with so many pictures of your wonderful daughter. I came away thinking how wonderful you and all your family are for the loving care and support you gave. How horrible it is that treatment such as Jess had would cost so much and how many need it and can't get it. Also I am astounded that it would take so many visits and tests to determine a diagnoses.

    I'm so glad your daughter has almost reached a healthy plateau. Please share another step in her journey in the future.

    Best wishes to you and your family.
    Carol

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  2. Aw, thank you Carol. We are so very grateful for so many things and people along the way. I will post about the "interludes," which were very special moments of beauty through this experience. I will post about the time a doctor left us crying in his examination room after blowing a bunch of hot air when he breezed in to see us asking "so what can I do for you today" because he hadn't bothered to look through her medical records and tests. I'll post about the world-renowned hospital that couldn't fit her in for an appointment until 6 months after her arrival at our home (we went to other doctors). I'll post about the very special cancer survivor who visited us in our home - she's a Life Coach who helps people explore and heal through spiritual understandings, and a host of other very deep experiences. My heart goes out to all who face challenges - and I think we all do. I love that Internet post that makes the rounds encouraging people to be kind to others because we never know what they're going through - I hold that very dear. More to come, mostly good!

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