May
18, 2012
Once Upon A Time There Was An Artist & A Nerd
And we lived happily ever after…
… for the most part anyway :)
It hasn’t always been easy, I’m not sure what relationship is all bliss and flowers. But we began with a few really big pluses from the start.
Mutual respect.
Friendship.
Love.
Laughter.
Sometimes those things are enough. Sometimes they aren’t. There is no “secret” only hard work.
Unfortunately there will simply be some relationships that will not last no matter how much you put into trying to making them succeed. So much comes down to sheer luck. When your relationship is in a rough patch, the effort you make to keep it working are very worth it. The rewards to a happy & long partnership are worth taking some big steps to make it work.
Everyone can start with a commitment to weather the storms and work at fulfilling the needs of their partners. We can have the resolve to truly give to one another and work past moments of unbalance. We can listen to people (like me & Doug for instance) tell us how they make it work and those suggestions may help a lot or at a point in time you may have given it every effort and the decision needs to be made to end a bad relationship. Somehow Doug & I have muddled through and have found some things that really work for us. Have we simply been lucky? Perhaps. But we also worked hard at being kind and supportive and thoughtful and we do employ some techniques that work really well to keep any resentment from gaining a foothold. We are simply a couple with some observations to share. I hope you’ll join us – we promise it will be fun!
The webinar tomorrow is for World Autoimmune Arthritis Day and it is on relationships & intimacy. We hope that by sharing some of our lives with others we can help other relationships where one partner has a chronic illness. Our expectations for our lives and relationships have to make a drastic change when a chronic illness enters the picture.
I hope you’ll join us tomorrow at 2pm PST or 5pm EST you may also forward this link on to anyone you think might be interested.
You need to sign in to attend and the audience is limited so please get today! https://www4.gotomeeting.com/register/541028183
Hope to see you tomorrow!
The image above was created to help me brainstorm our webinar session. Some of the photos are used in the presentation!
May
14, 2012
Our Part of World Autoimmune Arthritis Day
Over the past year and a half of advocating for the spondylitis community I’ve been very fortunate to lend my words, voice, and creativity to some great projects. I feel that part of being a health activist and someone who works to raise awareness of a chronic illness should take as many opportunities as possible to raise our voices and share our message.
A few months ago I was asked by Tiffany Westrich the CEO and founder of the International Autoimmune Arthritis Movement (IAAM pronounced “I Am”) to participate in the first ever worldwide coming together of advocates, organizations, and non-profits under one ‘virtual roof’ to share, learn, and speak about the very big difference between degenerative arthritis and autoimmune arthritis.
When we discussed the event, the idea was just coming together and taking form and initially Tiffany asked me to share about advocating but had also mentioned that she was still looking for someone to speak about relationships. And, that got me thinking that my husband Doug and I could share a lot on the topic so I asked him if he would be willing to do the presentation. To my delight – he was! I’ve watched as the event has come together and I’m so impressed with the work of IAAM and their volunteers and sponsors. We are honored to be a part of it!
I hope you can join us at 2pm PT or 5pm ET on Saturday May 19th for our part of this groundbreaking event. Here are just a few of the things we’ll be discussing:
- Does your partner “get it” and if not how can you help them understand.
- Take the emotion out of asking for help. State clearly, calmly and in a matter of fact way what you need. Our spouses cannot read our minds and it isn’t fair to expect them to.
- The two simple words that go a very long way.
And well we’ll try to mention a little bit about sex and intimacy in a relationship where one partner is dealing with chronic pain but we won’t go to the TMI zone – promise!
Register HERE
May
9, 2012
You won’t know unless you…. LEAP!
What have you always wanted to do? What have you been afraid to try but life has been too busy or the timing never seemed “right?”
What is it? Do you know?
For me I really didn’t know what I wanted to do. Nothing called my soul to action – that is, until it did. If you were like me you’d hear people say, “do what makes you happy,” or “live the life you were meant to live,” or here’s a good one… “follow your bliss!” Sounds good in theory but in practice sometimes you want to scream at the top of your lungs, “I’M DOING THE BEST I CAN AND I HAVE NO IDEA WHAT MY BLISS EVEN “IS” AND EVEN IF I DID GOING AFTER IT IS HIGHLY IMPRACTICAL!!!!”
Ah, the practical necessity huh! I really hate to break it to you but saying something is highly impractical is a great way to come to the end of your life and have to live with the regrets of what could have been. I’ll have some don’t get me wrong but I want more things I thankfully did than things I sadly didn’t. I hate “what if’s” – they keep me up at night.
So here’s the trick to not having a pile of regrets or what-ifs… don’t think you have to quit your job (like I did) and make an epic shift. Epic shifts can happen in a split moment. Decide. And please don’t think that you are too old or in too much pain or disability to do something that will make your spirit sing. Stop listening to those voices. Decide.
And take a giant leap. A giant leap in shifting how you think your life has to unfold. And as my friend Teresa (how I love to quote Teresa) says, “baby steps count.”
They do.
And lots of baby steps add up to things like circling the globe! wink wink nudge nudge
Then once you’ve taken that leap of faith, don’t stop. Simple formula for getting to where you want to go. Don’t stop, keep going!
Take a chance, do something you’ve always wanted to do. Don’t be afraid… Believe! We’ll be here to catch you if need be – place your fear in our net. Have faith in yourself. I’m betting once you fling yourself into the air – you’ll take flight and we won’t have to catch you at all. You won’t know unless you…. LEAP!
All my love and big hugs!
In The Studio Today I’m sharing the apple image from Day 319. It seemed appropriate today :)
May
8, 2012
We Did It – We Circled The Globe!
“Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.” – Margaret Mead.
There has been some discussion in the AS community as of late as to what “awareness” means.
If you pull out the dictionary, or google the word – you get a simple definition that falls far short in my opinion on the full scope the word has come to encompass. Being aware is not only something to strive for as we navigate our world but something that many are now arguing is a concept that has become trite, over used, and over ribboned.
Perhaps it has.
My feeling and answer to that is, “so what?”
Do we not work towards sharing knowledge just because some are already educated? That sure isn’t my approach to life and I hope, my fellow friends who have Ankylosing Spondylitis, that we don’t give up our quest to have people know about this disease just because some don’t want to see one more ribbon or be asked to participate in one more walk or fundraiser.
That will always be the case. We must simply find new and creative ways to talk about what is important to us. It is important to me so I will continue advocating for raising awareness and speaking about a need for a cure. It isn’t an easy road or frankly a popular one in many circles but again… so what? I don’t care if you judge me – I care to be a voice for speaking up about a disease that isn’t included in discussions about arthritis. It is a part of who I am and what I want to do in this life and people who choose to tune out will have first heard me roar!
Many of you know one of my mottos in life is “KEEP GOING!” Don’t complain about the situation of awareness if you aren’t going to look to help find ways to contribute to things getting better. Don’t criticize others efforts if you haven’t done something yourself to change the status quo. And please don’t sit by and simply watch when you can help. I don’t care how you go about helping raise awareness but please find a way that works for you personally, and contribute.
I congratulate everyone who stepped and was a part of Walk Your A.S. Off. You did something to make a change both for our community and for yourself. Bravo – I salute you all! And you have my deepest and most heartfelt thanks.
We did it and proved the naysayers wrong. We proved that we can actively work to move our bodies despite our pain. We proved what a small group of thoughtful, committed people can do!
Just shy of sixty four million steps taken and recorded! Imagine what we can do if we pull together and do more!
May
4, 2012
How Many Steps Did We Take? Enter To Win!
Enter to win an Art Apple A Day Awareness Poster. Simply guess how many steps you think we’ve taken in the name of Ankylosing Spondylitis during Walk Your A.S. Off. First you need to “like” us then simply put your number on our Facebook Wall.http://facebook.com/WalkYourASoff and you are entered. The number will be announced tomorrow night as well as the five closest guesses who will win two posters each. One for you and one for your Rheumatologist or doctor of your choice! Likes & Guesses have to be made by 8pm ET May 5th to be entered.
The Poster the winners will receive is Here.
It’s a big day tomorrow!
Remember to tune in on our Facebook page at 9pm Pacific to hear the number of steps we took.
May
3, 2012
I Owe The Flower
I perhaps owe having become a painter to flowers. ~Claude Monet
Until tomorrow.
In The Studio today May 3rd I dug out a design I did almost 10 years ago that I thought I’d share and add a quote to.
May
2, 2012
A Secret Message…
“Hope” is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops – at all
And sweetest – in the Gale – is heard
And sore must be the storm
That could abash the little BirdThat kept so many warm
I’ve heard it in the chillest land
And on the strangest Sea
Yet – never – in Extremity,
It asked a crumb – of me.
- Emily Dickinson
One of my all time favorite poets and poems.
In The Studio today May 2, 2012 I drew this bird, scanned and digitally altered it. I was craving turquoise and red! My friend Teresa of Right Brain Planner tweets in #secretmessage hashtags. I love the idea because sometimes we want to express something to someone in this digital world without saying who precisely we are sharing it with. So – today I do my first of many secret messages.
Apr
30, 2012
World Ankylosing Spondylitis Day – May 5, 2012
It’s not to late to be a part of our Walk. Simply go for a walk this week. For every mile we track 2000 steps. No pedometer needed!
And for all the participants… The Finish Line is in sight! We will be announcing the total steps contributed and walked in the name of Ankylosing Spondylitis on Saturday night May 5th at 10pm MT. Please join the event at http://www.facebook.com/events/384136258295744/ to hear the total LIVE!
Until tomorrow!
Apr
27, 2012
Team Spondylitis – All Steps Help!
All steps count – be a part of circling the globe in steps made for Spondylitis!
For the final week we encourage everyone to participate. Please walk 5 steps or 50,000 during our last week and if you haven’t been contributing – it is not too late.
By World AS Day just let us know your steps helped us circle the globe. Post them by May 5th on our Facebook Page – http://facebook.com/WalkYourASoff
Simple, no pressure, and most of all fun!
Here’s to you Team Spondylitis – and to worldwide awareness!
Until next week,
Apr
25, 2012
Happy Birthday Betsy!
“Your birthday is a special time to celebrate the gift of ‘you’ to the world.” – Anonymous
Love you Betsy – Hope you had a wonderful day and thank you for being a gift to so many. Stand tall & stay strong!
Until tomorrow,
In The Studio today, April 25, 2012 I’ve been playing with how to digitally alter my drawings. FUN! A new creation out of an old drawing. You can see I’m still learning how to adapt the designs but it’s still pretty I think.
Jennifer Dye Visscher created the Art Apple A Day Project and started her daily apples on October 1, 2010 as a way to help bring awareness to a disease called Ankylosing Spondylitis. The 365 apples and posts remain here on The Feeding Edge but have been archived for easier viewing at 
