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.
His article explains in clear terms what happens in the body when Autoimmune Disease is triggered. I was stunned by the comments – I had to weigh in myself because people turned his article into a three ring circus of ways to “cure” us and all of the things we’ve done to bring these diseases on ourselves. These comments we feel deeply. Very deeply. Like arrows in our hearts.
It’s time for us to fight back – shoot those arrows back at them. One comment here and there won’t have an effect but if we bundle our shots together, we can change this perception.
The comments could wound me if I let them. I choose to not let them anymore.
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.
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.
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!
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!
LOVE that!
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!
Until tomorrow.
Jenna
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.
If you obey all the rules you miss all the fun. Katharine Hepburn
I set some rules upon myself on Day One of Art Apple A Day. They were:
A 5” x 5” image – no other restrictions except that it could not be photographs or digital art. It had to be done by hand. My marks and hands interacting with the page.
There were two thoughts in my mind in regards to the above. One, I needed a small manageable size (anything much bigger would have become too much to continue to produce everyday) in hindsight I think 6″x6″ might have given me just a bit more freedom in the creative process but I was also thinking that you can buy a pre-made frame and mat with a 5″x5″ opening. The second thing I had in mind with this was that I had a vision of all 365 pieces lined up like calendar groupings in an eventual exhibit. Calendar days are square and with the art being square all of the apples could be framed and hung like the months they are a part of. I can see it – hopefully it will happen one day.
This “rule” has given the apples a certain continuity and added purpose but many days or nights when I went to create, I would feel an urge to do something far beyond the limits of these constraints. Sometimes creativity gets very overwhelming and the feeling to let that energy get out can take up a lot of energy in just the thinking about it. This is a feeling that I missed about myself for many years when I was so sick. I would try to force myself to create but it didn’t lead to art that felt good or I liked. It was interesting to observe this and extremely frustrating to experience it. Another aspect to my lack of creativity in those years was that I did not get excited by the colors. The use of vibrant color is what jazzes me when I create. For me to make art with a lack of color is a practice and exploration. Using bold beautiful color combinations is what naturally comes out of me. I was very sick for a number of years and the changes to me were huge. My vibrancy and joie de vivre were gone and along with that I could not see the colors. They were dull and muted and sparkle-less. Finally I found a doctor who believed me and worked with me until we found a diagnosis and a course of treatment that finally started to give me my life and self back. And one day thankfully I really believed that the colors returned in their full splendor – and with them so did I!
Tomorrow marks my last month of Apples. I’m feeling excitement and melancholy in extremes and with these emotions and reflections has come a decision about what I’d like to do for these last 30 days.
When I announced to my friends and family that I would be endeavoring on this project, many thought “she’s doing what?” And proceeded to place bets on my failure. I don’t blame anyone for that feeling. I doubted myself too but there was something in me that knew so deeply that I would accomplish what I set out to do. There have been two days in this process that I thought I might not make my daily apple. Day Eight – right at the beginning when it would have been so easy to walk away, thankfully Doug & Elizabeth encouraged me that night and I created “Spiraling Out of Control” – not very good but it honored where I was in my head that day and I got it done. And much more recently, Day 324. The emotions and exhaustion of the day seemed too much to create anything – I eeked one out and wrote about the feeling of that night a few days later on Day 326 – Brain Freeze. Those are the only two days I felt at a real risk of failing although Doug might have a different observation. I’m hoping that my last month is smooth sailing but to be honest, I know that it will be just as challenging so I’ve decided to break my self imposed rules and let my creativity take me anywhere it wants to go!
So tonight I post a 5″x5″ piece. I have no idea what tomorrow will bring when I can do whatever my heart desires! When I told Doug of my plan he said “noooooo!” Not quite the reaction I expected and then I explained why I want to do this and he understood a bit more. But because oh his strong reaction, I’ve decided to ask all of you.
What do you think? Should I do this or finish out the year as I laid out originally? You guys vote and I’ll do whatever you want because these apples are for you! Let me know what you think – and be honest!
Until tomorrow.
Jenna
Day 335 was created in watercolor drips, collage apple made from a page out of my old dictionary, a piece of origami mesh, my little stamp letters. All stitched together on my $100 sewing machine!
About a month ago I posed a question on my Facebook page asking people what their favorite fairy tale was because I was looking for ideas for The Daily Apple and I received some amazing suggestions. Initially I was thinking of doing a week of Fairy Tale Apples but I decided that I would go insane and good ideas might start to get blurred together so…
I will be doing a Friday Fairy Tale apple each Friday from now to the end of my year and I have been really wanting to do Cinderella’s Carriage as an apple instead of a pumpkin.
Doug says I should have made the carriage red or green or yellow even – I can’t win! But to me it was always going to be a golden apple carriage.
A few updates:
1. The Daily Apple will be coming in your emails again soon – I’m working on changing the service so I can get you better information.
2. The Apple-A-Thon plans are coming along. Please make sure to mark your calendars for September 29th & 30th and sign up under separately with the “Contact” tab to receive information specific to the event.
3. Send me your apple ideas! I’ve got another 50 days to go and ideas are greatly appreciated at this point. Feel free to be as creative as possible and don’t worry if you think I have already done your idea – I got an idea from someone the other day and it was awesome and I hadn’t done it yet!
4. If you haven’t joined my Facebook page – I post The Daily Apple there too as well as things about art and health. I’d love to have you *like* me.
5. You guys are all so fantastic – thank you for supporting me through this year.
Until tomorrow.
Jenna
Day 316 was created in inks and watercolor – and gold metallic!
If you like this apple – you might also like these days too! Day 29, Day45, and Day 127
He is someone who I can laugh with, share my day, my successes and failures, and someone to lean on in the difficult times. Don’t get me wrong – we’ve had our times and our disagreements as all marriages do.
Doug has dealt with the ups and downs of this last year right by my side. He has been my biggest support in this; he lives this daily with me and he has on a few occasions been very concerned and upset that perhaps I’ve put too much of myself into this journey. You see, he was there when I couldn’t move, when I didn’t want to get into the car to go anywhere because every little bump caused me horrible pain, and he was there when I was humiliated by neurologist from Stanford who laughed at me when I was desperate for an answer.
So… he watches over me and is a voice of reason for my passions and drive. He does not want to see me go back to those days if there is any way he can prevent it – he will – even if that means tough love on occasion. But I want to tell you all that Doug Visscher is my hero. He is a man who has stood by me and loved me in my worst of times and I adore him. I couldn’t have asked for a man to love me more. We have weathered some big storms and we are stronger because of them.
Today was difficult day and he brought me flowers. I love getting flowers, what woman doesn’t but I loved the ones today the most of any he’s ever given me because these flowers said “you are going to be ok & I love you.” And I know that as long as I have my good man next to me – that those flowers are right.
Until tomorrow.
Jenna
Day 314 was created in Letraset Pantone Tria Markers and a touch of watercolor.
I grew up learning to gut through difficult situations. No Kvetching allowed. But my friend Michael of Spondyville started a topic today on one of the support groups for AS. He posed the following:
In accepting having AS, and learning to cope, have you gone too far? By that, I mean, are you TOO good at coping? Do you tend to put up with some symptoms because you figure it just comes with having AS? Have you ever waited too long to see a doctor in the hope or on the assumption that your symptoms were just part of an AS flare-up and would go away? How do we continue to find a balance between not jumping into a panic at every new physical change that comes along and knowing when to go see a doctor about a possible new problem? I know I’ve been guilty of waiting a bit too long in the past. Just curious about all of your thoughts, since this is something, that, it seems to me, is rarely discussed.
The discussion was really very interesting and made me think of how people are so different and handle pain and health in so many different personal ways. Nina mentioned that she felt her desire to not complain was more cultural and that she didn’t want to be the kind of person who complains but we all decided that there are times when we need to kvetch!
