Rain & Pain: an opportunity to relax and reflect

Today, we are having a hard spring rain.  The air is thick with the scent of spring.. earth, moisture, flowers.. a beautiful smell!  The atmosphere is also thick, with a pressure system that is absolute torture for those of us with chronic pain, fibromyalgia and autoimmune disease.

I describe the feeling this way: It is like having little bits of dark matter, covered with needles, weighing down on every joint in my body.  The feeling of being weighed down is constant, but I can live with it. Moving is the real problem.  I can't move my fingers, wrists, feet, hips, knees, neck... (ect.) without feeling sharp pain and stiffness.  So, that sure makes things "difficult."  This morning, I couldn't even squeeze my toothpaste tube; I had to smash it with my palm on the counter.   Luckilly, I have an electric toothbrush (GET ONE! It saves a surprising amount of energy).

Beautiful and Strong little Birdie! 
Thank you HD Wallpaper Mania

Things in my life have been nothing short of madness- March Madness perhaps? sorry, couldn't help myself!  I'm publishing the childrens books "Why Does Mommy Hurt?," which is the single most difficult and challenging thing that I have EVER done, in my entire life.  I believe the extreme challenge exists because in addition to the book, I have (obviously) chronic pain, a 3.5 year old, and a real job!  Anyway, my first thought this morning was along the lines of "NOOOO! Not Rain! I can't handle this!"  Then, I realized that I had an amazing opportunity.

I decided to spend the whole day on the couch relaxing, no housework allowed! I was going to play the adult version of "hot lava" - can't touch the floor!  It has been a much needed respite from my achieving, perfectionistic brain- a brain which tells me that nothing is ever good enough.   That I CAN do one more load of laundry.  That I CAN take on one more project.  That I CAN walk a mile to the playground; all while my body is screaming "please, please, let me rest!"  So, today, I am!  My son and I are listening to mozart and building puzzles, its a good day :)

I have accepted that I will be in pain when it rains; when it snows, when its cloudy, and even when its GOING to be cloudy.  Now I see clearly that I have been seeing these days as inconvenient and depressing, when they really are an opportunity to relax, reflect, and let go! (Well, at least on the days I don't have to go to work!)

I don't remember the last time that I've let myself lay on the couch for hours, surrounded my my messy home, and my messy life, without trying to "fix" something.  It's absolutely wonderful.

My rain ninja!

My son and I gave up and went outside around 8pm.  We put our boots and raincoats on (left the umbrellas inside, however kiddo insisted on bringing his pretend ninja sword).  We stomped in the puddles, ran around, and had a blast! Jimmy fought the rain, he fought the trees, he fought all of the pretend enemies he could! We walked around for a 1/2 hour, getting soaked, but loving every minute!

Here is kiddo, fighting the rain! I like to think he's fighting for mommy :)


**Check out my new blog especially for parents with chronic illness: Parentswithpain.com, and my childrens book on chronic pain, Fibromyalgia and Autoimmune Disease: "Why Does Mommy Hurt?" 

Support "Why Does Mommy Hurt?"

Great News today!  The Kickstarter campaign for my childrens book:

"Why Does Mommy Hurt? Helping kids cope with having a parent with chronic illness, Fibromyalgia, and Autoimmune Disease"

... was 15% funded, the first day!  [Update: we reached out $1,000 goal in just 6 days!] I am overwhelmed with the amount of support and positive encouragement that I get every single day, from friends and family, but also from complete strangers.  To all of you who have supported me, whether through your words, or otherwise, THANK YOU! 

Read the full story of "Why Does Mommy Hurt?"

Please support me!

Kickstarter rules stilpulate that the project must be 100% funded in order for me to receive funding, So, every single dollar helps.  If you can spare a dollar, please support this book today!  If not, no worries! Please share the link below with your friends, family, and social networks.  

A portion of the proceeds from "Why Does Mommy Hurt?" will go to the National Fibromyalgia & Chronic Pain Association, whose president, Jan Chambers, has supported me every step of the way. 

My little guy and I - Surviving Together!

This is the most challenging thing I've ever done.  I used to wonder why I was writing the FIRST childrens book on Chronic Pain and Illness, but now I know why... It's exhausting! Raising a child while dealing with severe chronic pain (I have MCTD/lupus and fibro) is hard enough, so I really must be nuts... but I'm not going to give up! I refuse to give up.  I'm doing this for all of the parents out there who can't, and the kids out there who have to live with this, along with their parents, every. single. day. 

Please support and share my project today! 

Kickstarter Campaign Site:

https://www.kickstarter.com/projects/111512999/why-does-mommy-hurt

Thank you, 

Elizabeth Christy

Have a Nature Scavenger Hunt with your Kiddos to Welcome Spring!

One Wonderful Saturday...

My 3.5 year old son turned to me and said "Mommy? I want to learn about Science."  The words I have been dreaming to hear since I learned I was pregnant! I'm a Science-a-holic myself, and my first career was in Cognitive Neuroscience at the Georgetown University Medical Center, I LOVE BRAINS. *Not Zombie*

When I was a kid, my dad had "Science Sundays" for my identical twin sister and I.  We dug up fossilized leaves. We made volcanoes. We searched for bugs in the backyard. We made wonderful MEMORIES! and most importantly, we both developed a life-long love of Science. My twin sister has gone on to become an extremely successful Physicians Assistant, and specializes in the background science of disease. 

Kiddo showing off a seed he found

2.7 milliseconds after uttering those words, I grabbed my son, a backpack full of gear, and some fruitsnacks/water, and headed to our local park, Claude Moore, in Sterling VA.  Miles of beautiful trails, lakes, streams, and even an historical area, this is our favorite place to spend a sunny day; and a perfect location for a Nature Scavenger Hunt!

I made a simple 10 item list: 7 "easy" items and 3 "maybes":

1. Something red
2. A bug with 6 legs
3. An oak tree
4. A fish
5. A red bird
6. A feather
7. A seed
8. A pinecone
9. A squirrel
10. An earthworm

Kiddo spots a Cardinal - Check!

We started down a trail, he was thrilled, all decked out with books, binoculars, a net, and a magnifying glass (all found at the local toy store when he was barely 6 months old- mommies can dream!)

He loved using the binoculars-- after he finally looked through them the right way of course ; )

Off to look for some fish

As a boy, his favorite activity was getting muddy and wet in the stream, looking for fish, tadpoles, and other interesting things.  I literally had to drag him away from the water to go on to the next item on our list.  But we ended up back in the water anyway! (BRING BOOTS!)



We collected some of the items (pinecone, seed, feather), but left most things there. Like the red bird and squirrel of course!)

Kiddo running to the water, holding his bag of goodies.

The hunt took about an hour, he had a BLAST! We talked about the science behind each item... how seeds grow.  How to distinguish an oak tree from other trees, what pinecones are, and what types of birds and animals eat them (there are seeds inside!).  We talked about what types of animals live on land, water, or both.  We discussed why birds have feathers while squirrels have fur.  He was loving it, and learning, all at the same time!

Yum!

After we found everything on our list, we found a lovely spot with a bench near the water, and celebrated with fruit snacks, while looking over our collection.  (**After liberally applying hand sanitizer of course! A must if you're going to be playing in a stream or lake!)


It was a wonderful day, and one I will never forget; and hopefully one he will remember as well.

What did we do next?

We went to the library of course!  We checked out books on animals, trees, and DINOSAURS!

Check back next week for our "Make your own fossil adventure!"

Want more now? Check out this great list of kiddo-friendly science experiements


Thanks for reading! I blog on educational childrens activities, as well as living and parenting with chronic pain and disease.  Follow me by entering your email in the upper left hand corner where it says "Follow by Email", you will receive a notification from "feedburner," so click the link in the email to confirm your subscription. Or, follow me on Twitter!

tags: science, kids, experiments, children, activities, education, toddlers, nature, sterling, claude moore park, parenting, parenting tips

Turning Suffering and Pain into Joy and Hope; for Children.

The children of people with invisible illness suffer quietly.  As soon as my son, now 4, began to communicate, I tried to explain, in words that he could understand, why mommy was unable to play as much as he wanted me to, why I couldn’t stay awake longer than a few hours, and why I grimaced from pain so frequently.  How can one explain to a young child, when this is his “normal," that I wish things could be different for him? That he has done nothing wrong when I am crying. That sometimes, I desperately want to get down on the floor and play blocks, but I literally CAN’T.

The guilt of raising a child under these circumstances is overwhelming.  I often force myself to smile, play, and be strong for him.  To walk him a mile and a half to the playground and back, only to lock myself in my room in tears of exhaustion upon arriving back home.  To play catch, legos, playdoh, color… all of the joys of childhood, joys that take so so many “spoons”.  After putting him to bed, I once left his room and immediately laid down in the hallway and cried; exhausted and overwrought with guilt. “I'm not doing enough. I can't do enough. I will never be good enough for him."

In order to help my son cope and understand my illness,  I searched the far reaches of the internet for a childrens book on Fibromyalgia, chronic pain, or even just having a sick parent in general. I found absolutely nothing.  Shocked and appalled at the void,  I chose the obvious solution; I wrote my own!  At first, the plan was just to write this new book solely for my son.  However, I could not stop thinking of the millions of other children in the same situation, and the other parents, as desperate as I was.  I knew something had to be done to help those families. Thus began the saga of “Why Does Mommy Hurt?”

The Final Cover!

The words came easily to me; I finished the text in a few days, but the illustrations… they haunted me.  I. Cannot. Draw.  I came up with a few pathetic sketches of stick figures, then moved on to the animal kingdom; bunnies, bears, and even turtles.  In a last ditch attempt, I even tried to illustrate the book with “cute” monsters. They were not cute.  They would've haunted any reasonable childs dreams.  My illustrations were left crumpled in a pile on my desk, under a damp layer of “FAIL” tears.  Then I remembered my father.  I had seen his sketch book as a child and marveled at the detail of his work, and his obvious natural ability to draw.  I was overcome with love and joy when he literally jumped at the chance to help me.  He began working on the book immediately, and created beautiful digital illustrations for my book; inspired by the actual features of my son and I.  The book was coming to life! 

At that point, I decided that I WAS going to do this.  One thing I’ve learned in my years with invisible illness is this:  goals are my life-energy.  They feed my hunger to stay alive; a hunger that often fades when faced with a never-ending stream of suffering.  I have also learned that I can achieve anything I want to, as long as I don’t give up.  My invisible illness has done something I would've never anticipated; it has made me stronger than I ever thought possible.  I can now tolerate extraordinary levels of stress, pain, and suffering, suffering that would have left me in the fetal position as a “healthy” person.  

A potion of the proceeds will benefit NFMCPA

Last year, I managed to arrange a lunch meeting with Jan Chambers, President of the National Fibromyalgia and Chronic Pain Association, showed her the book, and pledged to donate a portion of the proceeds to the organization.  Jan is an amazing woman; who also happens to suffer from FM.  She loved the book, and has supported me ever since.  “Your book will help millions!” she said.  Emboldened by her words, I began a networking and promotion plan which continues to this day.  Just last month, we learned the wonderful news, PUBLICATION! “Why Does Mommy Hurt?” will be available on Amazon and Barnes and Noble as early as Summer, 2014.  Dreams do come true; especially the dreams of those who truly know their value; those of us with invisible illness. 

WhyDoesMommyHurt.com

The PFM is a blogger living in Potomac Falls, VA, and is devoted to creating a world-wide community of parents living with chronic pain, fibromyalgia, lupus, and other autoimmune disorders. Follow her by entering your email in the "follow by email box" on the top left, on Facebook, or Twitter.

*I am also pleased to report that there will soon be another childrens book available on chronic pain; "Foggy Frog and the Pain Gang", written by my friend in Australia, Megan S! Here is a link to her blog and Kickstarter campaign.  

If we have to suffer; lets not bring our children with us! 

Want to tweet this? Just copy and paste!
New childrens book on #chronicpain and #chronicillness! "Why Does Mommy Hurt?" http://goo.gl/0iFGvr @parentswithpain

Why Does Mommy Hurt? Coming Late May 2014!

Why Does Mommy Hurt?  

Helping kids cope with having a parent or caregiver with chronic pain, Fibromyalgia, or autoimmune disease

all rights reserved, copyright 2014

copyright 2014, Elizabeth M. Christy 

By: Elizabeth M. Christy

Illustrated by: James G. Miller

"This is a beautifully illustrated book which helps children understand the experience of their parents' chronic illness or pain.  This book helps open up communication about some of the most common problems for those with a chronically ill parent-child relationship, including fatigue, forgetfulness and frustration.  I advise it for all of you parents of small children out there with Fibromyalgia or chronic pain!"
 -Dr.Kent Smalley, Mychronicpain.com


"This book will help millions!"
- Jan Chambers, President of  The National Fibromyalgia and Chronic Pain Association (NFMCPA)  *A portion of the books proceeds will benefit the NFMCPA!

WhyDoesMommyHurt.com

Living with chronic pain or illness is hard enough, but how do you explain it to children? This beautifully illustrated book is a joyful, yet honest, portrayal of family life burdened with the problem of chronic illness.  This is a delightful story told from the point of view of a young boy learning to understand and cope with his mother’s Fibromyalgia and chronic pain. The story is told in a way that creates natural opportunities for the family to talk about both the symptoms of chronic illness (such as pain, frustration, fatigue, and memory problems) and how they affect family life. Even more importantly, this story puts power into the hands of the children in these families by validating and giving a voice to their feelings, explaining chronic pain in a way they can understand, providing a model for thinking and acting positively, and showing them how they could help a loved one afflicted by chronic pain.  This book is appropriate for the families of young children who have a parent or caregiver experiencing any of a wide-variety of illnesses associated with chronic pain, such as: Lupus, Lyme Disease, ME, CFS, Fibromyalgia, Arthritis, Autoimmune Disease, Multiple Sclerosis and many others. It also includes a helpful "tips & resources" section for parents, which provides information and urls to support parents, like inspire.com and myinvisiblelife.net.

My son talking about his mommies new book!

The paperback is $9.95 on Amazon.com, and the eBook is $3.95. Both also available on parentswithpain.com/shop

Want to Tweet this? Just copy and paste!: 

New childrens book on chronic illness "Why Does Mommy Hurt? whydoesmommyhurt.com #fibromyalgia #chronicpain @parentswithpain

Thanks for reading! Follow me by entering your email in the 'follow by email' box in the upper left hand corner, or on Facebook! 

**Check out my new blog especially for parents with chronic illness: Parentswithpain.com,


Tags: fibromyalgia, chronic pain, invisible illness, childrens book, self-publishing, kickstarter, meCFS, lyme disease, autoimmune disease, MCTD, UCTD, spoonie, FM, parenting

Spoonie Mom (and Dad!) Survival Guide: Toddler Edition

Raising a toddler is a full time job.  For those of us with a chronic illness, it can be exhausting.  If you're also balancing a full or part time job on top of your parenting duties, it can become overwhelming!  Here are some tips and resources to help you cope.

Make a “Painy (or Rainy) Day” list of fun, relaxing activities you can do at home with your child:

Free back massage!

• Read or color together 
• Play “Simon Says”, “I Spy”, or board games
• Party! “movie and popcorn”, pajama, tea, ect.!
• Get a free massage! Give your kids some toy cars, and tell them your back is a race track! works every time ; )
• "Zoodles Kid Mode" for iPhone, Droid, Mac or PC is a great all-in-one tablet/phone environment for children. They can play educational games, draw, listen to story books, and more; all without being able to access your phone, make purchases, or otherwise "mess up" your phone/tablet.



photo credit: babycenter.com

• More ideas: 40 Ways to Entertain Your Kids While Lying Down!

Make your child feel important and special by letting them help you with age-appropriate work. If they can walk, they can help:

Kids Love to Help! 
mychorechart.com

• Picking up/organizing toys, books and clothes
• Using baby wipes or spray bottles filled with water to clean surfaces
• They can help hand you clean dishes: fill a sink with soapy water and give them a sponge and some plastic dishes. Have them hand you dishes from the dish washer; no more bending over!
• Laundry: Have them get a step stool and stand in front of the washer. As you sort, hand them what you want to wash, and they can throw it in; my son LOVES this. Less moving for me! Later, have them stand in front of the dryer; hand them the wet clothes and have them "throw" it into the dryer". They can even fold. My 3 year old can fold towels, and even match socks!
• As your child grows, they will be able to help more. 
• Be sure to reward them well, with hugs, kisses, thank yous, and special treats!

Explain your condition to your child using simple language

• Discuss how some things are “invisible”, like pain. Even though you can’t see it, you can feel it. (Other examples: wind, cold, heat) 
• If you are unable to fulfill a promise due to your condition; apologize, and explain that your condition makes it hard for you to be active.  Make sure they understand that its not their fault.

Safety Tips

Use Mr. Yuck Stickers!

• Always keep all medications out of reach from your children. My 3 year old son managed to open a "child proof" bottle of Vitamin D "gummi bears". These things are dangerous! They look and taste like candy. Keep them out of sight and reach!
• Be sure to discuss WHY medication is dangerous, and tell your child to tell you immediately if they see any medication lying around.  

Join a play group

Playgroups! 
examiner.com

You will not be able to make all of the events and play dates, but you WILL make wonderful friends, gain support and resources.  Joining a group helps stress, and may motivate you to get out of the house.  In addition to having fun, moms groups will give you the opportunity to connect with other adults going through the same things you are.  I have made several wonderful friends on "Meetup.com" and Facebook groups.  You will have resources and help when you need it, from other moms you trust!

Let Go.  <Best funny let it go parody ever.

Meditate!
credit: wildmind.org

This tip was in my original "newborn" survival guide, but its true at every age.  Toddlers are messy, disorganized, tornado-like beings.  Your house will be a mess.  You will forget to pay bills, you will run out of milk.  Breathe. Put it in perspective, and Let Go of control! 

A wise woman once told me "I only really gained control when I realized I had none in the first place."

• Learn diaphramatic breathing
• Practice mindfulness meditation
• When you feel overwhelmed, sit down, close your eyes, and breathe.  Chances are, things won't feel so urgent when you get up.

Got kids?? Check out my new childrens book on Chronic Pain and Fibromyalgia!

Want to Tweet this? Just copy and paste!: 

Spoonie Parenting Survival Guide: Toddlers! goo.gl/ezbnJk #spoonie #mecfs #chronicpain #fibromyalgia  @parentswithpain

Thanks for reading! 

Follow me by email by entering your email in the 'follow by email' box on the left of the blog, or on Facebook. 

Joyful and pain-free days to all! ~PFM





Tags: Fibromyalgia, Spoonie, Lupus, MCTD, UCTD, mother, mom, baby, infant, newborn, survival, anti-inflammatory, flare, PPD, postpartum depression.