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 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.

Day 227 – Simple Sunday

Art Apple - Day Two Hundred Twenty SevenIt was a simple Sunday.

Doug, Ella, and I drove downtown for the Arthritis Walk – photos will be on my Facebook wall tomorrow. Ella was treated like a queen with a pretty blue bandanna to show that dogs get arthritis too as well as treats and love. We managed to do the two mile walk around Washington Park but I have to admit that my joints were not too happy towards the end and I did decide not to go for the extra lap to make it the three miles. Oh well – there is always next year.

Until tomorrow.

Jenna

Day 227 was created in watercolor.

Day 225 – Follow The Dots

Art Apple - Day Two Hundred Twenty FiveOne, two, three… everything in order. Right?

Most days I think I’m going along with my life just as I had laid it out in my mind as a young woman.

I was brought up believing that if I followed the rules, colored in the lines, and took the steps in order that life would reward me. Mostly it has but some times following the dots and doing the right things makes you just feel plain old foolish.

I’m thinking life might be so much more interesting if I can figure out how to create the picture without a plan; without following someone else’s rules.

Until tomorrow.

Jenna

Day 225 was created in pen & ink.

Day 220 – A Flood of Emotion

Art Apple - Day Two Hundred TwentyToday has been emotionally difficult.

I’ve run myself down a bit physically and pushed more than I probably should have for the last month. I wouldn’t change a thing and really, I’m fine, just very tired.

So, I decided to sit down in my studio this afternoon and whip up an apple, get it posted, take a nice long nap and have a relaxing evening with Doug who’s spent many evenings in the last month alone bless his heart.

I turned on the computer and there in the Hope & Apples inbox was a new story. A Mother’s Day story that opened the flood gates of the emotions I’ve been holding onto. It really could have been my story – they are all extremely powerful and so meaningful – these stories are my story. They may be a little bit different here and there but spondylitis hits lives hard no matter how it hits.

I wish I could take the pain away. I wish I could take it all on myself. I wish for a cure so that mothers and fathers don’t have to worry that their children may one day suffer like they have. I let the emotions flood in, I had a good cleansing cry, and now I’m going to figure out how next I might continue the fight for awareness and –  of course –  a cure.

Until tomorrow.

Jenna

Day 220 was created in mixed media.

A story I wrote for the Fight Like A Girl Club weighed heavily on my mind too today.

Day 126 – What Might Have Been

Art Apple - Day One Hundred Twenty Six
Art Apple - Day One Hundred Twenty Six

What might have been.

I guess we all ask ourselves that question at different points in our lives. I have some regrets; don’t we all? I want you all to know that the last 4 months have made me extremely happy. Thank you for the support, encouragement and love. I just can’t wait for whatever the future holds. Here’s something new to tell you:

I was asked to write about ankylosing spondylitis for the website Fight Like A Girl Club. I had a dream recently that I recount in my first post there. I’d love it if you went and took a peek!

Until tomorrow.

Jenna

Day 126 was created with acrylic and watercolor. I’ve been experimenting with using acrylic on watercolor paper as a resist and then layering watercoloring on top. You can really see the “effect” of this technique in the image of my dream that is posted at The Fight Like A Girl Club – oh and guys are allowed 🙂

Day 123 – Three Fortunes

Art Apple - Day One Hundred Twenty Three
Art Apple - Day One Hundred Twenty Three

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!

Day Seventy six – Bee Hive Apple

Art Apple - Day Seventy six
Art Apple - Day Seventy six

I am so excited to tell you about Henri & the Bee!

A story by a 5th grader by the name of Katherine and her dad Jeff, about a a dog named Henri who dreams of travels across the country and through the seasons in search of a sweet treat. Helped by a friendly bee, Henri savors life’s moments.  This charming story is illustrated with lovely, vivid designs and is available as a book or calendar and the proceeds will be donated to various non-profit organizations.  One of the featured charities is the Spondylitis Association of America!  Please take a look – it’s a great way to support the SAA.  I’m thrilled to have been able to introduce Jeff Lea, the CEO of Rev Pay Solutions, to the folks at the SAA and he was kind enough to include The Feeding Edge.com on their blogroll as well!

Until tomorrow.

Jenna

Day 76 was created with pen & ink and watercolor.