“Pour yourself a drink, put on some lipstick, and pull yourself together.” – Elizabeth Taylor
Good plan. Will do!
I’m headed to the mall to shop at Nordstrom’s Rack in the hopes of finding just the right outfit for my t.v. appearance.
Oops – did I let that slip out?
Yes indeedy folks – I will be interviewed on a morning show in NYC the day before the Apple Paint-A-Thon and I need to make Liz and all of you proud. I will pull myself together!
One of my dear and best friends, Stacey is meeting me there tonight to help me come up with something that looks a bit more cosmopolitan and a bit less Colorado dusty back roads. I may even put on a bra! Special times call for special circumstances.
Love to you all for your continued and much needed cheering on. My thoughts with Betsy and her family tonight.
I faded a bit today. My body called for an unexpected time out.
I could have pushed through but right now I’m on an endurance marathon and sprint to the last apple so – although my list is long and the details need to come together right now – I did what I usually don’t – and listened to my body and stopped.
I will get done what I can get done. Tomorrow is another day and today’s break was a huge help in rejuvenating me.
Day 354 was created in watercolor that I cut into a shape of an apple. I then placed a piece of tracing paper on top of the vivid image and sewed around three edges and dropped it in along with a bunch of seed beads.
Oh my goodness – I was thinking today that it’s a good thing I didn’t try to do as I wanted on Day 335 and break my apple rules – what was I possibly thinking?
My mom has been with me everyday and at every step through each apple. She has cheered each high and she’s felt my lows probably more than I have. When she told me she was writing about her impressions of the last 10 years I felt a huge sense of relief. I cried when I read her account. The memories are very difficult to relive but I am so glad she found the strength to remember and share.
Jenna’s AS Journey – Her Mom’s Perspective
“Jenna hasn’t talked much about her AS story. I’d like to share my version. I know all of you recognize the common, hurtful threads.
In 2000 the calls from Jen in California were becoming more desperate. Something was very wrong.
Doctors were being of no help and Jen was becoming less and less able to function. In early June Doug was scheduled to be away for a week and when Jenna and I spoke there was terror in her voice at the prospect of being alone for that time. The behavior was such a radical change from Jen’s norm that I flew to California to be with her. During this year she had already experienced two violent viral attacks of the flu and a horrible reaction to nose surgery to correct a deviated septum. Were these triggers?
Now the fatigue had set in.
Then the pain came.
She was working part time and while I was there she had me drive her all over the Bay area to her work locations – since she was sixteen she always drove. This omen loomed large.
Every moment Jen wasn’t working, she was resting in bed, resting while beading jewelry on the couch to divert herself from the pain and fatigue, or sleeping. Oh, and she was eating. Her body craved more and more nourishment. I had a period when I suffered with Pallindromic Rheumatism during which I thought that if I could just eat enough, energy would return and I’d be stronger. The very difficult pain I experienced during that time also allowed me to better understand what Jenna would go through in the coming years.
Since my visit to California
I’ve seen her lie on a chaise lounge in the kitchen with me, because she didn’t have the strength to sit up and we needed each other’s company. We were scared.
I’ve heard a doctor ask about her relationship with her husband.
I’ve seen her taped up by the physical therapist.
I’ve seen her attach electrodes to her muscles.
I’ve seen her get shots to deaden the nerves in her hips.
I heard in disbelief that she drove three hours to pick up a rescue dog – Ella became her all day companion and comfort – a reason to get out of bed.
I’ve seen her get ultrasounds.
I’ve taken her to acupuncture.
I’ve listened to her tranquil music and smelled the aroma therapy.
I’ve watched her buy vitamins in bulk and herbs.
I’ve watched her inject herself in the stomach.
I’ve seen her cringe when one of her brothers hugged her too hard.
I’ve seen her in agony unable to speak and barely able to move.
I’ve seen her wear running suits for two years because anything else hurt too much on her body.
I’ve seen her be humiliated by pharmacists when purchasing prescription pain medication.
I’ve seen her get test after test and search longer and harder for an explanation than anyone I’ve known.
I’ve heard her sobbing in pain.
I’ve seen her back and loins covered in angry, red rashes as we tried to find a new place for the pain patch.
I’ve watched her gain weight.
I’ve watched her lose too much weight.
I’ve seen the pouch under her chin which I know means bad times are coming.
I’ve seen her struggle to remain visiting with the family to watch her young nephews play when the pain is breaking through – now she can paint with Parker and carry Beckett (that was crazy, Jen, but you did it).
I’ve watched her struggle to take care of Doug, her husband.
I watched Doug care give and support and support and support. It’s a tough, tough job. Thank you so much, Doug. XOXO
I’ve watched their distress at not being able to have a child together.
I’ve watched her be “up” for her Dad so he wouldn’t hurt so much at her pain.
I’ve seen her go to primary care physicians, ER rooms, the Medical Center at Stanford, physical therapists, pain management physicians, nerve specialists, rheumatologists (she has a wonderful one now).
I’ve watched when the family pushed her in a wheelchair around an amusement park because walking wasn’t an option – nor was going on rides. She was there to participate with us.
I’ve heard her suffering on the phone in the midst of a bad reaction to a new drug.
I’ve heard her describe having her coccyx adjusted.
I’ve watched the hurt when friends who couldn’t or wouldn’t understand or cope faded away.
I’ve seen her wear her neck brace at her brother’s wedding – thin as a rail – and then watched her lose another fifteen pounds from a negative response to Arava.
I’ve seen her flinch when we went over a bump in the car – she sits in the back so she won’t have to turn her head to talk to us – still.
I heard her desperation when she didn’t test positive for the HLA-B27 gene. She called from the parking lot outside the rheumatologist’s.
I’ve seen her eyes when they were red and inflamed angry and dry from uveitis.
I’ve seen the depression when hope seemed far away.
I’ve seen the skin peeling away from her fingers from psoriatic arthritis (the last link that confirmed her diagnosis).
I know she’s tried NSAID’s, Muscle Relaxants, DMARDs, TNF’s self-injectables, Opiates and other pain killers (pill & patches) , Steroids, Ant-depressants, Anti- convulsants, and the list goes on.
I watched her put on a red hat Doug gave her one time for Christmas and smile courageously at him although hurting all over.
I’ve seen her disappear behind her eyes.
I’ve seen her disappear behind her eyes.
I heard her joy when Remicade was approved for use for patients with AS and start the therapy. I watched her slowly return from the pain and drug fog and laugh more again and start to paint again.
I heard her long struggle to free herself from the narcotics which allowed her to live at all, the drugs which dulled some of the pain; it took her six months and she did it alone, but together with Doug, and the advice of a pain management physician, who didn’t believe she did it outside a hospital.
I watched her struggle to find a job (she eventually got three) after years of not working, when financial times were very tough and holding on to health insurance was a necessity of continued hope.
I watched when holding the job was all she could do. Other parts of life had to wait.
I boggled in amazement when I received the first email saying she was going to paint an original apple every day for a YEAR to raise awareness of AS! What???
I’ve seen her paint an apple a day and write a blog to go with them.
I saw the overwhelming fatigue and, yes, the telltale pouch under her chin after AS Awareness month. In March she was working on three projects for AS awareness – usually fourteen hours a day.
I’ve read so many stories just like Jen’s. Each has their own difficult version of effort, pain, depression, survival, hope and awareness. I’ve shared their emotional distress from my computer.
I’ve read and appreciated many inspirational blogs from AS’ers and people with other chronic diseases, also dedicated to raising awareness and helping others.
I know the financial strain it has been.
I know where the disappointments are.
I’ve seen her keep her goal in front of her to try to reach out to those in the community and beyond, to talk about the positive, to dream her dreams and share them, and to send a helping, encouraging hand. All of which effort is magnified by chronic illness. I know she will go ahead forward after this year.
I’ve seen her grow in understanding, knowledge of the AS community and its struggles, empathy and friendship. She has made wonderful on line friends whom I, too, treasure and who give her courage every day by their responses to her efforts.
I know how overjoyed she was when her brothers said nothing would keep them from NYC to help celebrate her year long journey and asked her to stay strong through to the end.
I look forward to meeting some of you and your families in NYC and to all her supporters whom I won’t be able to meet, her father and I would like to say, “Thank you from the bottom of our hearts for your gracious and moving support.”
I wish Jenna, AS sufferers, everyone who will participate, and the SAA the best finishing/fundraising event ever. Send an apple, paint an apple, bring an apple. We’ll take pictures and post them of the wonderful time we will have.
To all of you who are care givers or supporters of people with chronic illness, I know you understand this story and I wish you courage and patience and I send you a light to shine through your darkness, for the difficult days can indeed be dark for everyone (thank you, Melissa, for that lovely image).”
Susan & Jenna
Day 348 was created with one of my favorite photos of my mom and me. It sits on the counter in my bathroom – a place I can look at it all the time. I tried to paint this apple with every vibrant color of the rainbow. I think the photo captures our relationship. I love you Mom.
Great question! I hope the answers I have will lead to things just as great. Here are a few areas I have outlined. I hope you all continue to follow me as my journey switches focus a bit this fall and in the years ahead.
Here are my plans – we shall see.
1. I’m not going anywhere! I will continue to blog here at The Feeding Edge and work for AS awareness and other health and social issues. My scope will just widen a bit. I’d love to also continue to create occasional “Apples For AS” and support the SAA in any way I can. I believe in what they do and I don’t think anyone does it better!
2. For the last year I have been an artist, blogger, and health activist. I did not focus on making a living. That was not where I wanted to put my energies. I decided to spend the year raising AS Awareness and that took all of my energy – well, along with making apples! Moving forward, The Feeding Edge will become a Social Enterprise. What’s that you ask? From Wikipedia (I know) “A social enterprise is an organization that applies capitalistic strategies to achieving philanthropic goals. Social enterprises can be structured as a for-profit or non-profit.” Additionally the primary purpose of the company is a social aim.
3. So what is my social aim? I will work to assist and learn from other artists who suffer from chronic disease and who wish to establish an entrepreneurial social enterprise for their emotional and financial well being.
4. To the moon and beyond… my loftiest goal is to strive to develop a non-profit organization – The Art For Good Foundation – with artists and social activists everywhere to support issues for the common good. I reserved the domain name months ago – we’ll see where this goes. The Art For Good Foundation will be a vehicle to find ways to do good things for the world through art. It broadens the scope – includes any and all social programs and artists.
Big dreams? You bet!
Day 345 was created with watercolor, ink, black thread, and pastels.
***A big thank you to my Mom, Susan Dye, who is helping me organize my thoughts and reining me in when necessary. She will be joining me as my path switches to the above endeavors and helping me administer and manage while attempting to stay retired at the same time! You’ll meet her on Monday – she’s written a post that we will share with you all. When Doug read it a few minutes ago his comment was, “Your Mom is wonderful!” He’s very right on this one – she absolutely is!
I want people to understand how challenging these chronic illnesses can make life. I want this so very much because I know personally what it is to live through pain and fatigue as well as the confusion of looking for years for answers to the pain that was robbing huge chunks of my life away. I know how difficult it is to continue on day after day and put on a happy face because you are afraid people will judge you if they know what you are dealing with. I want understanding and empathy for my AS family. I wanted it when I didn’t know them, just what they went through. But I want it even more now (I didn’t think it was possible) because I’ve traveled this last year with them. I’ve heard and understood what they are going through. All of you who’ve been with me, or just joined me, or I’ve yet to meet. I’ve been making apples in the hopes they will help spread understanding and awareness.
I have been making apples.
I paint them, I draw them and I use string and glue, pastels and acrylics. I use apple images to create and build day after day so that one day I’ve got something big. Something that cannot be ignored or turned aside, something that hopefully will gain the attention of people who have no understanding of what we endure. At least that has been my hope. I felt that if I could build something big enough, I’d have a way to get people to slow down and take a look. Even if that look was for a few minutes, those few minutes are all we need to say, “please hear us, share our stories and help us find a cure…”
I’m not good at asking for help. I never want to impose on anyone or burden others but I’m going to ask you all to share this story with me. With your help it becomes about all of us and it becomes bigger and continues to grow and with your participation more and more people may take those few minutes to slow down and learn about this disease.
I simply ask for 5 minutes of your time, maybe your child’s time, and maybe even their entire class or church group or neighborhood can take the time to create an apple. A piece of art that stands for something so much bigger. I then ask you to photograph or scan them, post them all over with the simple phrase “Please hear us and help us turn the blue apple green for a cure for Spondylitis” or use your words and share whatever is in your heart. I will be painting apples in NYC – The Big Apple – for 24hrs straight because I need people to hear us. It is my personal way to try to make that happen – I’d love and so appreciate it if you join me.
If you can come to the event please bring your family and share our coming together as a community and help us support the organization that gives us so much – we’ll be raising funds for the Spondylitis Association of America. For any apples received via mail or email – I will take them to NYC as part of the fundraiser. Your apples will be raising money too! I think I can paint 200 apples in 24hrs – my challenge to you is for all of us to match the last year of apples I created each day. Can we gather 175 more apples? I know we can! Paint one, paint two, paint as many as you can! And, here’s the really super news… the SAA has been awarded a challenge grant this month from the Jean & E. Floyd Kvamme Foundation that will match donations dollar for dollar up to $50,000! Can you imagine if we could match those funds! The amount of good the SAA can do with $100,000 is staggering!
For those who can’t be at the event. From wherever you are from all over the world, please be with us in spirit and post those apples on Facebook pages and on twitter and wherever else you can. Email them to the President, to Oprah, to your local governments or Spondylitis Group. Our apples can make a difference!
Please email your apples as a .jpg or .gif to email@example.com Your apple via email will be printed out once and be sold in conjunction with the fundraising efforts for this event. You retain all artist copyrights beyond this one fundraising use. You will be contacted if there are any other ways we’d like to show or use your art to ask your permission. If you are sending a digital image we ask you keep the original in a safe place – future goals are for exhibits of all our apples!
I will include the guest apples I’ve received at The Feeding Edge over the last year. For apples to be included in the Apple-A-Thon fundraiser event, your apples need to be emailed directly to me at the address above or sent to my P.O. Box (address on Contact Me page) Due to the amount of time it is taking to plan and prepare for this event, the apples may not be posted on the Guest Apples Page of The Feeding Edge until after the event. All apples will be posted on The Feeding Edge FB page – please make sure you’ve *liked* the page to see and share your apples! Apples, photos and video of the Apple-A-Thon will be posted there as well as close to live as possible! Please join me … “Be part of the story, be part of the cure!”
Day 344 was created in grease pencil, watercolor, and pastels.
This apple that seems to never sleep is so gosh darned excited to get to the city that never sleeps!
I know I’ve been telling you all that information about the Apple-A-Thon is coming – and it is – but I’ve had a few details that have been harder to pull together than my insanely optimistic self thought they’d be. Doh! But what I’d love to tell you all is that I’ve designed an Apple A Day Art poster that I’m really excited about and will be a big part of the fundraising efforts for the event and through the month of October. Make sure to add your name to the “Contact Us” form here and pledge to get your art poster or one of the originals I paint during the 24 hour event.
I’ve promised my husband and my mother that I will try to unwind and get some sleep tonight. I am getting so excited that it’s been difficult lately. So good night good friends – please let me know via email or the contact me form if you think you might be joining us in The Big Apple for the event!
Listen to the Mustn’ts, child, Listen to the Don’ts Listen to the Shouldn’ts The Impossibles, the Won’ts Listen to the Never Haves, Then listen close to me — Anything can happen, child, Anything can be. – Shel Silverstein
I’m being drawn to the words and images of the great children’s writers. I wish we could keep being told the lessons we teach our children; the lessons of love and persistence and of starry eyed dreams of childhood.
As an adult it is so difficult to keep going after your dreams and to continue to believe that anything can happen, anything can be.
Do not listen to naysayers. We sure as heck wouldn’t let our children listen to them. Hold on to your dreams and don’t listen to anyone who insists on telling you what you can’t do.
Dig up those stories and listen to their messages…
And sprinkle in some pixie dust for good measure!
Day 342 was created in pen & ink in the style of Shel Silverstein with a twist – a little girl instead of a boy and a blue apple for spondylitis instead of a yellow star.
There is more treasure in books than in all the pirate’s loot on Treasure Island. – Walt Disney
Today’s apple, post, and quote are for my friend Holly. First and foremost because she is a treasure. She is a sparkly, shiny box of valuable goodies. She is passionate, creative, and funny and she has AS. I’ve been awed by her positive and happy nature despite some very difficult times she’s going through right now. I created this apple with her in mind, you see she creates beautiful treasures out of trash!
She makes amazing vases that she covers in chewing gum wrappers and other objects. They are beautiful and interesting and creative.
The quote – was just a lovely coincidence. I searched for quotes on treasure and found a quote that talks about one of Holly’s biggest treasures – books!
So today, I was thinking about Holly and all that she is going through. I was thinking of her creations, and her art she makes out of recycled objects and I wanted to create one for her today so that she knows we are all with her. Big love to you – hang in there my friend!
Day 339 was created in a piece of plastic shopping bag from my hair salon yesterday that I painted on top of, a collaged apple made from a yellow Southwest Airlines Ad & a used Safeway tissue box. The leaf came from a milk ad that featured The Green Hornet (because Holly is on MY superhero list), and the stem and beads are made of chewing gum wrappers. The “beads” are attached to the piece with a pretty strand of yarn.
In order to attempt to have a life that went beyond apple making, I instituted the “Saturday Apple.” These apples have often times been simpler images with almost no post. The decision to reel in my apple life on Saturdays may have saved not only my husband’s sanity but mine as well and I have come to look forward to them as much as I’m sure Doug has.
But today, after completing my apple I saw a post on Facebook about the risks of taking biologic medications. These are fairly frequent conversations – as they should be. Taking biologic medications are a serious decision to make and everyone has to decide for themselves what choice is best for them. I have people ask me about how I decided to start on them quite often since I speak on this blog about how effective they have been in my case. For me, it was a choice to do anything to stop the suffering I was in regardless of consequences. Luckily and fortunately – it has worked for me and I feel blessed everyday I’m better. If tomorrow it isn’t or I become ill – I will never regret that I have been given these last 5 years back.
What struck me about the question tonight that was so different than usual discussions was that a physician told this person that they would absolutely not prescribe them unless the patient insisted because of increased risk of getting cancer. Here is a report about this exact topic that came out a few months ago at the yearly EULAR conference. EULAR is the European League Against Rheumatism. The report shows no increased risk.
Yes, I was a bit stunned by this too.
I’ve decided to not pass judgement or write a commentary on this. I’ll just report what I heard. But what I would like to say is that there are risks to everything in life and most certainly in this crazy world bad things unfortunately happen all of the time. I choose to live for today and not worry for tomorrow – it is my personal decision – I’m not advocating my choices for anyone else. People unfortunately get cancer, we get AS, we have heart attacks and life is difficult – I’m stunned everyday by the tragedy and difficulties that people have to endure. I just don’t want people to suffer needlessly – for any reason. Naive and idealistic, I know but that is what I wish for as a person working to raise awareness of a painful and often times debilitating disease.
Day 338 was created in watercolor, pastel, mesh origami “paper”, polka-dot paper, thread, ribbon, and a stick pin.
*** I encourage and appreciate debate – please feel free to comment and disagree. Our shared views only help one another and increase understanding of how difficult it is to live with a chronic illness.