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Day 123 – Three Fortunes

I’ve become a member of a community of health advocate bloggers at WEGO Health.

WEGO is a site for people like me, who are working to get information about living with health challenges and issues regarding access to care in our communities and to the general public. It also serves as a way to use social media to connect our message to health professionals. Part of WEGO’s mission is to help me become better at what I do so that I can reach more people. A recent topic of discussion was, “What three fortunes would you give to your community about their future?”  Ankylosing Spondylitis takes twists and turns in our lives, so I can’t say what specifically may be in store for you, but I can share with you a few insights into how the “three fortunes” I’ve choosen may make the journey with AS seem less frightening.

Fortune one: Is broken open while you are going through test after test looking for answers and it says, “The human spirit is stronger than anything that can happen to it.” This seems very difficult for you to believe right now, but I want to assure you that it is true. You will get past the worst of where you are right now. And the fortitude that you will possess in the future will astound you and make you a better and more empathetic person.      “True contentment comes with empathy.” – Tim Finn

Fortune two: Is ready for you when you receive your diagnosis. It says, “Your pain is the breaking of the shell that encloses your understanding.”  No, you weren’t crazy and the pain is physically real, but so much of what you are experiencing is the pain of loss. Loss of “the you” who didn’t have AS. With this new understanding you begin to see that there is no easy fix; there is no cure.  Your new understanding grows and will crack through you with anger and denial. Eventually there will be some acceptance. That is the important thing to remember about this fortune. Your spirit will overtake the despair and you will learn to live with who you are now. This one isn’t easy – I still have times of anger and denial, but mostly I’ve learned how to make peace with my disease. Now I truly believe that I am who I am because of where I’ve been and I wouldn’t trade my life or experiences – it just is.

Fortune three: Probably the most important of the three fortunes says, “Be assertive when decisive action is needed.” This is something that a spouse or family member can help with in the beginning because you are just barely managing – which makes it difficult to self-advocate. Until you find the medications and methods to feel better, become as educated as possible about your disease so you can make the best possible decisions about your care. Your choices are what will be best for you when you find the right health care team. If one doctor doesn’t seem right for you then move on. Doctors don’t necessarily have all the answers. You need to have the information at hand. There are so many ways to have an arsenal of information (yes, it is ammunition) because you are fighting for your well-being. Get online, check out spondylitis.org and join – it is worth the membership fee and the money helps them help you. Go to the forums and to Facebook and venture into the world of Twitter. Don’t be afraid – there are people out there ready and eager to help you. We’re all in this together. Stand Tall – your future is bright!

Until tomorrow.

Jenna

Day 123 was created with india ink, watercolor, and a few fortunes! I made the fortunes out of strips of paper that I just attached by the edge of the cookie so the original has the fortunes in 3D – wish you could see it better 🙂

***I can’t help but include these links – just for fun!***

1. Get your own custom colorful Fortunes.

2. Make a cute fabric fortune cookie with these instructions!

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Day 122 – Patch Work

I was on a Fentynol pain patch for three years.

Pain patches are used for people in severe chronic pain. They were a blessing for me but they were also a constant reminder of the beast called pain that lives in my joints, tendons, and muscles due to Ankylosing Spondylitis. I had to switch them every other day and from location to location because of a site reaction that happens in most everyone. I was a patchwork of red welts high on my buttocks just below my waist line – the only place I could hide them from everyone but my husband. My heating pads (plural) were my constant companion which after time caused a very strange skin mottling – really lovely. These are some of the hidden affects of chronic illness – the things that slowly chip away at your self worth and spirit. Things that I don’t want to talk about or admit. But when my AS was finally controlled to a fair extent by Remicade I was able to ease my body off the pain killers and eventually off the patch.

February 14th will be 3 years since I’ve taken anything stronger than an advil. The story of how I was able to get off them is one for another day but it was a very difficult experience and only possible because of the Remicade infusion I receive. Without controlling the disease many people need the pain killers to live. When I eventually didn’t need them my body still did. This effect is what people who haven’t been through this don’t understand and just think everyone who’s ever taken a pain killer is addicted – and that is ignorance. If you know someone who is in pain and needs meds – please be kind. Become informed before you judge. There are so many people who don’t have access to the medications that could help them – and this is a collective ignorance. But please know, if you are on a pain patch and want to get off them – it is work to accomplish, but it can be done. If I could do it you can too – don’t let your fear or your Doctor stop you if it is what you want to do. If it isn’t – then I know that you know best what you need for you. No one else knows this but you. Trust in that.

Until tomorrow.

Jenna

Day 122 was painted in acrylic.

***Update*** I’m getting very close to having some great changes to my site. Hopefully you’ll be able to see the images better and more easily find things.  Stay tuned and remember you can get your daily apple every morning in your email – just sign up at the top right hand corner of this page 🙂

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Day 121 – Vera Apple

Artistic inspiration is a funny thing.

You never know where you’ll find it – I most certainly don’t, so I gorge myself on images. I subscribe to a number of shelter and a couple of fashion magazines and I look at a lot of art, design, and craft blogs. I find that even an interesting combination of colors can strike something in me. Tonight’s image is a nod to a textile designer who was apparently very big in the 1970’s. Vera Neumann created a similar apple for plates for Mikasa. I adore her gestural simplicity and had fun creating todays apple right down to the signature (lucky me that ‘Jenna’ looks like ‘Vera’ in cursive)!

Inspiration is less elusive when it comes to the blogging world of health activism. I’m amazed at the courage and strength people are finding to open themselves up and tell their story. Thank you fellow bloggers for showing the world that good things come from sharing your story no matter how painful.

Until tomorrow.

Jenna

Day 121 was created with a Brush tip Faber-Castell PITT artist pen and watercolor. It took a couple of attempts to get the quick spontaneous lines to come out in a way I liked but I did labor over it too much as much as I tried not to – paper and supplies still seems precious to me. I did do an apple on Day Eight that was 30 seconds and BAM!  But it was a crisis situation to say the least!

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Day 120 – Stand Tall

Stand Tall.

These two simple words have great meaning for me. They’ve become a bit of a personal mantra as well as the slogan for the Spondylitis Association of America. They remind me to keep the notion close at hand that I need to stand up straighter and taller. This is important not just because my default position is, well – not great (I’m being kind to myself here) but also because if I continue to slouch it will become the place my body is the most comfortable, less painful, and due to having AS, could possibly be the posture I’m in if or when the joints in my spine fuse.  There are fewer people with AS who will see this happen to them thanks to more education and research. The majority of which is done through the help and efforts of the SAA.

The other important aspect of this phrase is that it serves as a reminder to me to be strong and proud – to stand tall – and not hide my disease from the world like I really have wanted to do. It was my default emotional position about my AS until only a few months ago. Life as yourself is a much easier place to exist so I urge everyone – whether you have AS or not – to Stand Tall!

Until tomorrow.

Jenna

Day 120 was created in pen & watercolor.

Happy Open House to the SAA for their new office space celebration on Saturday. I’m thrilled to have 4 of my apples on their walls. If you are interested in which days they choose they are giclees of Day 2, Day 41, Day 75, and Day 93.

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Day 119 – A Tweet Tart

Twitter.

I was terrified of Twitter – seriously frozen with terror. I also thought why the heck would anyone use that? Why would I care about the exact location of my friends unless there is some real need to know. The idea of getting a play by play of a yummy meal is a more appealing concept but I have yet to see a tweet mentioning a tantalizing taste only tantalizing tidbits! Like: “I fell in love, in love with you so suddenly.” (which google tells me are lyrics from the band Hellogoodbye and not something I would ever choose to listen to) or a link to a 60 second stress solution and this evening there was a debate over how long you should keep your “fat” pants. I’d like to know how long to hold on to the skinny pants myself but that’s beside the point.

I got over it and ventured in…  and now I don’t see myself getting tired of it, in fact I really love it. I love the pieces of information, connecting to people who have similar interests and issues, and some of the sheer silliness too! But what I have come to love most is becoming friends with a stranger in 140 characters or less. Who knows what I might tweet next – a tart tweet by a twitter tart 🙂 (really I can’t help myself.)

Until tomorrow.

Jenna

Day 119 was created in graphite and watercolor – and a new shade of leaf green!

***New Guest Artist Apple – provocative “How Do You Like Them Apples” by Miriam Cassell***

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Day 118 – Full Spectrum

Here I go again about color…

Random Thought One:  Before I had any idea that I would study art at UMass, my parents bought a signed print of the full color spectrum of hearts by Jim Dine. I guess I was as intrigued by it as they were because I couldn’t stop looking at it. I can see it in my mind’s eye to this day and although I don’t consider the piece pop art apparently Wikipedia believes much of his work was. Here is a link to the piece, I may need to get one!

Random Thought Two:  One of my favorite web posts of 2010 was about the full color logos of the web from ColourLovers.com. It seems the most popular colors are blue (facebook, twitter) and red (YouTube, Adobe) but the top two ranked for branding are full spectrum color logos (google, windows/msn). We are all drawn to images that contain all the colors in their pure light form.

Random Thought Three:  My Dad picked me up from college one spring. On the drive back to Maine a rainbow appeared. It was like we were magically in the perfect center of the arch and we could see an entire half circle all the way across the sky and then… the rainbow came across the trees and over the road and INTO the car – on both sides.  I kid you not!  Now, you have to understand my Dad – a more enthusiastic lover of life and people could not be found. So it was only natural for us to start hooting and hollering and rolling down the windows to marvel at the revelation that there is treasure at the end of the rainbow. You just have to accept that you won’t find gold but something much, much more valuable.

Until tomorrow.

Jenna

Day 118 was created in watercolor and a touch of pearl metallic.

***Update*** My Dad added this in the comments but I’d like to add it here too:

Bill Dye’s comments “You have brought back such a wonderful memory; the two of us experiencing the startling revelation that the prize at the end of the rainbow was the joy of self and the thrill that we could see and feel it together. It came through the windows and right into our laps. As in the description of the family’s experience in San Francisco as told at the bottom of this link: http://quezi.com/985 it might not be as easy to explain scientifically as your older brother, Michael, told us later that day with his dispersing prisms, optics and refraction, we lived a moment in time that we’ll never forget that spot on I-495 just north of the Merrimack River in Lawrence, MA right across from the Lawrence airport. Your lucky Mom gets reminded of the event every time we pass that spot. As we lived that incredible experience, I feel that you’ve been touched by a rare sense of color and it’s powerful potential; thanks for sharing it with us daily. I really dread day 366; hope it won’t end. Couldn’t love you more.”

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Day 116 – Tin Heart

Oh how I can relate to the tin man!

One of my new Twitter buds has a slogan he uses and attributes to his Rheumatologist – “Motion is Lotion!” Keep active and those joints will stay happy. The tin man was stuck in one spot for years but let’s get moving, ‘Stand Tall’, and Move those joints as much as we can.

If  people with AS could carry around a magic oil can for when those creaky joints act up – wouldn’t that be amazing?  Unfortunately, for many the cure seems just out of reach.  I speak with people everyday who can’t access the medications that would provide them with relief. We need to find the “heart” in our country and figure out how to make some changes – people shouldn’t have to live in pain when there are medications that can help.

Until tomorrow.

Jenna

Day 116 was made with fluid acrylics and tin.

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Day 115 – Paint Escape

I was inspired today by a painting by Patti Agapi called Divinity.

Her paintings are abstract, color saturated, and glorious.  I was so captivated by it that I bought it!  I love to support fellow artists but I haven’t bought much art so I’m trying to change that. I’m going to start collecting where I can buy what I love and can afford. She is also participating in a 365 day creative challenge so click on her link above to check her work out. Patti included this quote on her Etsy page with the piece I purchased:

“Nature is full of genius, full of the divinity; so that not a snowflake escapes its fashioning hand.” – Henry David Thoreau

Love it.  So I thought I’d try my hand at letting the paint escape!

Until tomorrow.

Jenna

Day 115 was created with gouache, metallics, watercolor, graphite, and a touch of Mocha Parker writing ink. Apparently my Mocha ink was discontinued years ago and people are paying big bucks for unopened bottles. Humph – mine is open 🙂

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Day 114 – Baby, It’s Cold Outside

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What’s with the snow?

We’ve been pretty lucky where I live to the southeast of Denver although the ski areas are having a record season.  I know that my friends from the east     are    so    over     it!   Every state has snow on the ground this year except Florida! Even Hawaii saw snow on the tops of their volcanos!

Spring is so glorious after a long, cold, and snowy winter so hang in there everyone!

Until tomorrow.

Jenna

Day 114 was created with acrylics, tissue paper and graphite.  Igloo idea courtesy of my friend Christine in Massachusetts!