Day 364 – One More Apple

One day to go.

I can’t believe it. Only one apple left after tonight. It’s been a crazy few days and to be honest – I’m feeling exhausted. Between the event preparations of this last month, the travel and jet lag, and the early morning today to get ready for being at KPIX at 7:00 am has been a bit much. When you have AS, you prepare and plan. How long can I do something, how long can I stand, sit, or walk. We think of contingencies and then prepare for the worst and hope for the best. But what happens is that sometimes we go to New York city and spend the day in the hotel room.

I expected this would be the schedule but I hoped for boundless and endless energy! Oh well – I know I’ll make it through the Apple-A-Thon. Resting today was just a little bit of added insurance. My family and friends will be with me – holding me up and cheering me on. I love you all so much for doing this with me, for taking your time and your energies and sharing them with me, for my dreams. I love you all so very much.

Until tomorrow.

Jenna

Day 364 was created in acrylics and graphite.

***For any of you who haven’t seen the interview yet – here’s the link! Make sure to take a look at the great article the station did for us below the video!

***When we got to the station – two things happened that I thought I’d share. First, the producer said “wow, we wish you could paint an apple while you talk” – can you imagine! I’d love to paint an apple on t.v. but no one would have heard a word I said about AS. Maybe if I’ve got 10 minutes on a show and not 2! How bout next time??? Second thing was that they said all of my apples were too small (I thought we’d gone over that!) and did I have something bigger? Quick call to my Dad back at the hotel and he jumped in a cab and brought over the Apple-A-Thon Poster which ended up being perfect – and Dad got to see the inner workings of the t.v. station too! All in all, it all worked out and it was a great experience. Hopefully a little bit of knowledge and awareness about AS was spread today!

***Here’s a photo of me resting with my niece Parker and nephew Beckett. Parker picked out this beautiful magnet for me today – it’s an apple and I adore it!

***My thoughts today with my friend Amanda and her daughter Alexandra.

Day 363 – A Yankee Apple

New York here I come!

A New York Yankees apple was in order – a big thank you to all New Yorkers for embracing the Apple-A-Thon.

Since I was born in Princeton, NJ and my Dad grew up in Upper Montclair, NJ – listening to the Yanks with my grandfather, Willard who was a huge fan – I will root for the Yankees happily this year. My brothers, Red Sox fans and my husband a Colorado Rockies fan will have to – have to – approve this year.

Until tomorrow.

Jenna

Day 363 was created in pen & ink and watercolor.

Day 361 – Happy Apple Day!

Today is Johnny Appleseed Day!

I for one will celebrating and thinking about the glorious apple.

They have come to mean so much to me and hopefully to you all as well. Maybe I had apples on the brain all those months ago because it is simply the time of the year for the apple harvests. Perhaps it was that the adage “an apple a day keeps the doctor away” was so meaningful at the time but for sure the idea sparked in me for a reason.

What do you think Johnny Appleseed would think of blue spondylitis apples? I have a feeling he’d approve!

Until tomorrow.

Jenna

Day 361 was created with a few separate images of an old Johnny Appleseed $.05 postage stamp pieced together to make into a square instead of a rectangle as the original stamp was created. Ink and watercolors to give it a bit of paint and color!

*** My Mom asked me to add a note to today’s post that she plans on responding to every comment that you all made on her guest blog post from Day 350 – My Mom’s Perspective. She was so touched by your comments that she wanted to have the time to respond thoughtfully to each of you. I will post here once she’s done in the next week or so. In the mean time she’s says she’s looking forward to the Apple-A-Thon!

Day 359 – Our Skeleton Key

A skeleton key has come to symbolize something that can unlock a mystery.

Sometimes I think that Ankylosing Spondylitis will always remain somewhat of an enigma to me.

I wish I could unlock each door I have to pass through on this journey with my health and know what was on the other side. I wish we all had a magic key – an AS key to be a symbol or talisman to help us get through times of change with courage and strength. It might look something like this!

Until tomorrow.

Jenna

Day 359 was created in gold ink and watercolor.

*** I’m stunned and awed by the support that is coming in. A big thank you to everyone who has donated to the Apple-A-Thon fundraiser.

*** We received our first corporate donation today in the amount of $500 from BJC Health in Australia! who will be putting their commissioned apple in the lobby of their Spondyloarthritis Clinic – too cool.

*** Thank you Tom Contrino for your $150 donation!

In The Studio

Thank you Doug for working tirelessly today.

Thank you to my parents for working tirelessly today!

Thank you to Bill Beckwith of School House Farms for donating a bushel of apples for the event!

Day 358 – Don’t Be Fooled By The Calendar

Don’t be fooled by the calendar.  There are only as many days in the year as you make use of.  ~Charles Richards

Oy!

Every day is made use of even the ones where we rest, reflect, and chill! I remember the days on end when all I wanted was some relief of my symptoms. I know many of you are still in that place and I so wish it weren’t so. I still have those days although they are fewer between. I am feeling a huge responsibility to make sure that I express correctly how difficult most of the days with Spondylitis can be.

Please know I will do my best in my upcoming interviews. If you can express for me how you would say it – it would help me.

Until tomorrow.

Jenna

Day 358 was created in watercolor.

*** Thankfully computer issues resolved!

*** Thank you to the Spondylitis Association of America for this wonderful page sharing the Apple-A-Thon

*** Have you seen the donations page? Holly set up a great page – please take a look!

*** Guest Apples are flooding in – please send in yours too. Here all the news that’s fit to print.

Day 355 – Pulling Myself Together

“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.

Until tomorrow.

Jenna

Day 355 was created in – lipstick!

Day 350 – My Mom’s Perspective

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.

Then

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).”

Until tomorrow.

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.

Day 345 – Life After Apples

A lot of you have asked me, “What comes next?”

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!

Until tomorrow.

Jenna

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!

Day 344 – Let’s Do This!

I want people to know what Autoimmune Arthritis is and specifically about Spondyloarthritis – a group of diseases that cause pain and suffering in millions of people. They are Ankylosing Spondylitis, Undifferentiated Spondyloarthropathy, Juvenile Spondyloarthopathy, Psoriatic Arthritis, Reactive Arthritis, and Enteropathic Arthritis.

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 jenna@artappleaday.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!”

Until tomorrow.

Jenna

Day 344 was created in grease pencil, watercolor, and pastels.

Day 343 – The Apple That Never Sleeps

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!

Until tomorrow.

Jenna

Day 343 was created in oil penicl and watercolor.