Looking Back – Day 5

Today is Day 5 of the Art Apple A Day Retrospective – for information on the project click here.

Day Five – October 5, 2010

Looking back 10 years ago today…

I woke up so relieved I had survived Day 4! But here I was again and I realized I had better come up with some plan to spark inspiration or I’d be burning the midnight oil far too often and I’m a bed by nine kind of gal!

Thankfully I had received my first request two days earlier. My friend Sandy was in the midst of Breast Cancer treatment and wondered if I could create a pink apple for her. My first thought was, “wait, aren’t these apples for AS awareness? is it ok that I create one for Breast cancer?” And just as quickly as the thought entered my mind it was replaced with, “I’m creating an apple for Sandy” because of course I would!!! (Her request is on Day One in the comments)

If you click to see my original post for Day 5 you will see that the October 5th apple did not end up being Sandy’s apple however… I did create one you will see later this month!

Shifting to today in 2020 I’d like to share some thoughts on resting. I rest my body most afternoons from around 4pm until the time I feed my dog Lucy and cat Bittie, typically around 5:30pm. Obviously there are days I can’t do this but if I’m home and finished with my work I do. It’s a habit that helps me manage the resources of my body and disease. In my 30’s and 40’s I didn’t want to share with people the amount of time I needed to rest because during the crisis years it was a LOT. Now, it is about maintenance and balance and really, it’s habit too – now I’m writing my daily post while I’m laying down which makes me VERY happy.

Taking the weight off my spinal column for a bit before making dinner or doing evening activities really helps me enjoy my time at night with my husband and if I go too many days without this schedule I can feel the difference so this is part of my approach to maintain as healthy a life as possible. I’m active and move in the morning, I am productive for the day, I rest for a bit late day, I enjoy my evening, and I get to bed early. The list of things I do to be as healthy as possible is long and it has been developed over the last 15 plus years. Getting a diagnosis and being put on medication isn’t a magic pathway to remission – it takes work and exploration and then it takes more of the same and an openness to adding new items to the list as new approaches are tested. In fact, I’ve had more success in reducing pain and fatigue just in the past two years than any year prior and that’s because I continue to explore new things.

If you hear someone say that something helps them, consider trying it out. I add something new one at a time as much as possible so that I can evaluate its effectiveness. This isn’t a one and done type of disease – it takes a multi-pronged approach and it takes a lifeboat (more on the lifeboat at a later date) and it takes flexibility of thought and attitude. Beware of people who say something doesn’t work because that is ONLY their experience. I’ll share all of my long list as the days go on but today’s tip is rest mid day (preferable lay down to take the weight off your spine) because your back will thank you and if you flare – shut it all down full stop. Flares mean something is really not going right and rest is the first prong of flare fighting.

And the story will continue tomorrow…

Side note: My friend Sandy is cancer free and doing great!

Apples For A.S. ~ 10 Years Later

On October 1st it will be 10 years since I took a giant leap into a year long project to raise awareness of a disease I have called Ankylosing Spondylitis or Axial/Undifferentiated Spondyloarthritis ~ A.S. for short because those full names are ridiculous!

My story is like so many who have A.S. It’s about the challenges we face when our health becomes compromised and severe pain & fatigue invades our bodies. I’m not over stating this – it is extremely scary to see your young body shut down. A. S. strikes people in the prime of their lives so a huge part of the issue is we are not believed. In fact, we’re told many demoralizing things like,

“Yeah, my back hurts too.” or “Try Turmeric, it will stop your joint pain!” 


I even had a Doctor from Stanford ask me how my marriage was. Seriously.


Many of the suggestions for overall immune and joint health are well meaning and valid – I now incorporate many into my health regiment. 

BUT… during what I call the crisis years… when your body is in such revolt and you have no answers – these suggestions are actually very hurtful. What we need is educated doctors and empathetic family and friends. We need to be heard so that we can get back to our lives.

For many with AS it takes almost 10 years to receive a diagnosis. Our search for answers is exhausting, frustrating, and long but I was finally referred to a Rheumatologist who kept working on sorting out the symptoms and believed me and didn’t give up. After finally receiving a diagnosis the long road to being “better” ~ but unfortunately not cured ~ can finally begin. 

With a treatment plan I started to feel improvement ~ the worst of the crisis was past ~ I could move again and think again.

But I was angry!

I wanted to scream at the unfairness that most of my 30’s were basically a bust. At this point I was trying to figure out how to move past the hurt and do something constructive with the new understanding of what I had just endured. 

I wondered how I could share my story to help others. Ten years is too long to be in such pain and basically disabled – I was almost bed ridden for the couple of years before finding help. (Those who knew me before AS and those who know me now find this very difficult to imagine and it is a difficult truth to share). If you are struggling with any health crisis I hope my story gives you strength and hope. A.S. treatments aren’t magic, the disease is difficult; it fluctuates from day to day and year to year and for many the treatments aren’t effective or accessible but there is hope to find your way to a better place.

I wanted to share hope most of all so I came up with the idea to use art as a way to focus myself and gain interest in learning about A.S. 

“Art Apple A Day”  was created! I chose apples because they are a symbol of health. 

Each day for a full year, via my blog and social media, I shared a piece of apple art along with stories of challenges, thoughts, and successes and sometimes all I could manage was creating the artwork. My apples became a vehicle to discuss difficult topics in a mostly positive manner and to my surprise I also found friendships online with so many amazing people who understood what I had gone through because they too had A.S. Over the course of the year and since that first apple, the community of strong, courageous, and loving people have become like family.  

{{{ I LOVE you guys!!! }}}

The year was a huge challenge in so many ways but I wouldn’t change it for anything and I am stronger for it! Now after all this time, I will share the journey once again, along with new insights, stories about what happened in the background, and 12 new apples – one for each month this time! I hope you’ll say hello and join me once again or for the first time because An Art Apple A Day might not keep the doctor away but I promise you it will be something interesting and positive in your timeline!

You can find me here as I take a retrospective look back each day or on Facebook and Instagram. Please don’t be a stranger – stop by and say hello!

See you October 1st!

Day 365 – Not The End… Just The Beginning!

The Big Apple has been wonderful.

After two days of muggy overcast skies we woke to a beautiful sunny morning. The perfect day for the last apple.

I have so many things I want to say and my list of thank yous is very, very long so I want to make sure to take the time to do it well. I’ve painted 50 apples today so far – we’ll see how far and how many I can paint. The number of apples from all of you have yet to be counted but I’m so touched by every single glorious one!

Until Sunday.

Jenna

Day 365 was created in liquid acrylic paints – a golden apple!

*** So sorry for such a late post – can you believe that on Day 365 – I almost FORGOT to post!

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 362 – It’s About The Cows

Here we’ve been all these days and I’ve been saying it’s about the apples.

Let me see if I can explain.

About a year after I finished college I ended up following a boy to Colorado. I had fallen big time – nothing else would have made me pick up my few belongings get into my grandmother’s Oldsmobile Calais and drive 2000 miles away from my family.

The boy was handsome and rugged and very involved in the mountaineering community of Boulder, CO. I was so completely intrigued by this set of people and of course by him that I threw myself into a life that was foreign and challenging. I had just graduated from art school and here I was trying to keep up with extreme athletes, skiers, and yes, even people who’d climbed Mr. Everest. I kid you not! What was I thinking? Well, as many of you have seen – I become focused on something and I don’t turn off to it easily. So, I started running the trails around Boulder, learned to rock climb, and back country ski. Each endeavor was enormous to me and it came so easily to them. I was proving something to myself – or trying to – I wasn’t succeeding. I lagged behind in every task. I could never find my wind (the reason I quit track in High School) I injured myself non-stop etc. etc. You are all shaking your heads – you know the drill because my body, my genes knew I had AS, it would just be years until I found out why I couldn’t do these things. It was frustrating to say the least and it eventually ended the relationship because really – I wasn’t worthy of the “group” or this silly boy.

One day near the end of my stint in Boulder, a large group of us went to hear Reinhold Messner speak on the CU Campus. I had to be explained who he was with many eye rolls. Reinhold Messner is thought to be the greatest mountaineer in history. He is renowned for making the first solo ascent of Mount Everest without supplemental oxygen. Yes – amazing person to hear speak.

Although Mr. Messner has a long list of ascents his talk was mostly about one fateful day in 1970 when he and his brother attempted the first climb of Rupal face of Nanga Parbat – tragically his brother Günther Messner died on the decent. It was obvious to everyone in the captivated auditorium that although he would continue to climb, the tragedy was always there haunting him and in his mind on every trek. With his heavily accented English he spoke of how you can do everything in life to be prepared for contingencies but that life simply comes down to the “cows.” To a stunned and confused audience of Messner worshipers – they all nodded and agreed. I sat silently with a smile on my face. So strong was the misunderstanding that it became the biggest topic of discussion after the talk was over. You could hear people saying “what was he talking about cows for?” I couldn’t believe it actually. People wanted to believe and hang on each and every word of this amazing man that they ended up missing the context of the powerful message. Life doesn’t come down to cows; it comes down to CHAOS! That element of science, of life that cannot be predicted. Once we can accept this – we can handle anything that comes our way.

Guess who was in that auditorium that night – guess who I may have walked right past. The chaos would show up in it’s glory for us and we’d be married just a few short years later.

So, when you’re feeling like you just wish you could wrangle life and make her go your way. Remember that there is no controlling chaos – not so sure about cows!

Until tomorrow.

Jenna

Day 362 was created in acrylic. A cow with an Apple Bell.

***I wonder if Reinhold Messner ever thought he’s make such an impact in the life of an artist who crossed his path by sheer – chaos!

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 357 – A New View

Take in a new view – you never know the wonders you might see.

Until tomorrow.

Jenna

Day 357 was created in watercolor.

***Update on my computer issues – they are official. I’m posting tonight from Doug’s computer. So frustrating.

Day 356 – Learn To Dance In The Rain

“Life isn’t about waiting for the storm to pass, it’s about learning how to dance in the rain.” – unknown

Dance in that storm! Even if it takes using a bright big red umbrella to give you a feeling that you can make it through. My great big red umbrella has been my friends and family, my sweet furry companions, and hope for a bright sun shiny day.

I see it clearly.

Until tomorrow.

Jenna

Day 356 was created in pen & Letraset Tria Pantone Markers

Bright Sun Shiny Day

*** I apologize for the quality of this image – something is not working with my wordpress blog. I was in a panic but…. weathered the storm and decided to see if I could post the image from my PHONE! Crazy but it worked and then I was able to add the words. Where there is a will – there is a way 🙂