Day 356 – Learn To Dance In The Rain

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“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 🙂

 

Day 355 – Pulling Myself Together

Art Apple - Day Three Hundred Fifty Five“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 354 – Fading

Art Apple - Day Three Hundred Fifty FourI 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.

Until tomorrow.

Jenna

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?

Day 353 – Kindness & Joy

Art Apple - Day Three Hundred Fifty Three

Please choose kindness. Choose Joy.

Until tomorrow.

Jenna

Day 353 was created in pastels.

Day 352 – Apple Brown Betty

Art Apple - Day Three Hundred Fifty TwoIngredients

1 1/2 teaspoons freshly grated nutmeg
1/2 cup sugar
3 cups 1/4-inch bread cubes
2 tablespoons melted butter
Grated rind of 1 lemon
2 pounds large apples
2 to 4 tablespoons cold water (optional)

Preheat the oven to 375°F.
Combine the nutmeg and the sugar and set aside 2 tablespoons. Put the bread cubes in a bowl and toss with the rest of the sugar mixture, the melted butter, and the lemon rind.
Peel, core, and slice the apples into fairly thick wedges. Line the bottom of a heavy 1 1/2-quart casserole with 1 cup of the bread cubes. Layer half of the apples over the bread and top with 1/2 cup of the bread cubes. Layer the rest of the apples in the casserole and sprinkle with water. Cover with the rest of the bread cubes and evenly sprinkle the reserved 2 tablespoons of sugar over the top. Put the lid on the casserole or cover tightly with foil. Bake in the center of the preheated oven for 40 minutes. Take the lid off the betty, and bake for 10 to 15 minutes longer, or until apples are tender and the topping is brown.

From Epicurious http://www.epicurious.com/recipes/food/views/Apple-Brown-Betty-106204#ixzz1YG3uBcE3

Until tomorrow.

Jenna

Day 352 was created in brown ink.

Day 351 – Don’t Let Yesterday Use Up Too Much Of Today

Art Apple - Day Three Hundred Fifty OneDon’t let yesterday use up too much of today. – Cherokee Proverb

Oh, how difficult this is. I find it amazing what my mind goes back to. I love the idea of living in the moment and not dwelling on the past but what an incredibly difficult practice this is. I think this proverb is a realistic approach don’t you? As long as we don’t spent too much of today in yesterday then it’s been a good day!

Until tomorrow.

Jenna

Day 351 was created in acrylic, watercolor, white gel pen, red spray paint.

***Thank you Rita for gathering Apples For AS at your art class on Sept 24th. The Apples In The Orchard class will be taught in oil pastels – Rita will have a table set up in the middle of an orchard in Beemerville, NJ! For more information on Rita’s classes and Art Camps please visit her website! Thank you so much Rita – we can’t wait to see the beautiful apple creations that are inspired by such a great setting!

 

Day 350 – My Mom’s Perspective

Art Apple - Day Three Hundred FiftyMy 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 349 – Take Out

Art Apple - Day Three Hundred Forty NineMy mom always said, “Don’t go to the supermarket on an empty stomach.” Maybe not her most thought provoking piece of advice but words to live by for sure.

I think tonight I could have listened to that advice when making my apple. All I’ve been able to think about for the last hour and a half is Bangkok Tokyo. Crazy name but that’s what you get in Aurora, Colorado. The glorious thing about it is that it is AWESOME and has Thai food and sushi and I adore their Basil Eggplant and Tofu Green Curry. I don’t eat meat much anymore and definitely don’t eat gluten so Thai is my go to favorite food.

But there are a few problems with getting Bangkok Tokyo. The first is that Doug isn’t a fan, it’s not that he doesn’t like it but he doesn’t love it the way I do either. The second is that we live 20 miles from much of anything so delivery is out of the question (probably a good thing for my waist line) and running up the street takes a concerted effort and about $7 round trip in gas. When Doug said he was making a run into town, I could think of nothing but the pages of items on their menu – but got my standard fare.

Gotta run – food’s calling!

Until tomorrow.

Jenna

Day 349 was created with a Bangkok Toyko take out menu, and a splash of paint.

*** Apple-A-Thon Update – we have a wonderful location near Times Square – For a printable schedule check in tomorrow here or on The Facebook Page

Day 348 – Sending Love & Light

Art Apple - Day Three Hundred Forty EightSending love and light to so many people tonight. I’m thinking of you and grateful for each and every one of you.

Until tomorrow.

Jenna

Day 348 was created in acrylic and watercolor.

*** I do have a post that my mother Susan has written. I will post it – I’m just not sure when.

A blog post and person who gave me so much today – Teresa, thank you sweet friend!

Day 347 – Surviving The Difficult Days

Art Apple - Day Three Hundred Forty SevenToday was a difficult day.

We all have them. We all get through them. I’ve discovered the great outlet of writing this past year. So – I wrote it all out and I feel so much better. I haven’t posted on The Fight Like A Girl Club website in a couple of months so my feelings and emotions of today came pouring out. If you get a chance – please check it out.

Until tomorrow.

Jenna

Day 347 was created in watercolor with a technique I love – create an object with water only and then lay in the color. The area that you place the water contains the color and keeps the line.