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.
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.
To live is so startling it leaves little time for anything else. ~Emily Dickinson
Life just moved along today.
Nothing startling but good news, bad news. Laughter and tears. Thank you to my friends and family (both my family family, and my AS family) for sharing this ride with me.
I could not ask for more – you are all very important to me.
I keep having these moments of reflection about this past year. The days are going by so quickly right now and I have so much to process and figure out and wonder about what comes next!
There was quite a symphony going on this morning while Doug and I were lazily waking up.
The Russian Olive Trees are starting to ripen; the birds are in celebration mode and woke happily to feast but that was a mere background beat. The dog was stirring, shaking her body awake and Bitty Kitty was chasing after the reflection that scooted across the floor as the sun came in through the window and hit the fan oscillating back and forth. Tagger was persistently voicing his disapproval of our sleeping in by meowing away that it was in fact time for breakfast. And, the crescendo (I can’t help it) was the alpacas next door mating.
Those were the sounds of our lazy Saturday morning – gotta love the country!
Until tomorrow.
Jenna
Day 331 was created in fabric, mesh screen, gesso, graphite, thread, and acrylic paints.
“Really love your… apples, want to shake your tree” – Steve Miller Band, with a slight improvisation.
This song takes me back and makes me sing it in the goofiest of ways, swaying my hips and hearing the tune in my head. If fact, since I decided to post this apple and topic today, I can’t stop singing “waaaaan wooooow” and “oooee Baby.” I can’t carry a tune so… I sing anyway!
This is the exact thing I love repeating over and over to bug the beegezus out of my sweet husband Doug until I get him to laugh or scream (yeah, I perform until I get a reaction – childish but oh so fun.)
Today I’m actually feeling sorry for the poor guy. I’m a bit giddy silly for some reason this afternoon and since he has a home office he is lucky that he has zero commute but unfortunate in that he has to put up with my antics all day long. “Lovey, dovey… lovey dovey…. lovey, dovey – all the time”
Honey – “You’re the cutest thing that I ever did see!” LOL! Even when you don’t put the Salt & Pepper away – humph.
Until tomorrow.
Jenna
Day 321 was created in mixed media collage and acrylic paints.
4. Check out the new and improved emails from – The Daily Apple! If you haven’t already done so, please sign up to receive apples in your inbox. The New Daily Apple will include information that I don’t post on my blog including art, health, and of course… apples and whatever strikes my fancy 🙂 Take a look at a sample and sign up!
I first saw this quote a few years ago on my step-daughter Amanda’s facebook page and I was thrilled. Thrilled because I loved the quote but thrilled mostly because I felt so proud of the woman she had become. Leaping isn’t an easy concept, in fact it is darned hard every single time we do it. But, believing in leaping did allow for Amanda to move across the country in hopes of a job and something a bit different, it did allow her to persist in her pursuit of her MBA despite the challenges with financing an advanced degree, and it did allow her to make it the 9 miles she hiked this past weekend in preparation for a trip out to Colorado to climb her first 14’er.
Fourteeners, or 14,000 foot peaks as they are most affectionately known and of which Colorado has 53 or 55 depending on who you ask. Reaching the top of one allows for boasting and bragging rights when “bagged” and adoration if all of them are successfully summited. Thankfully am allowed to continue living in the state of Colorado because I did in fact “bag” one. Amanda and her boyfriend Tony have been training for their visit over Labor Day weekend to hike with Doug up either Evans(14,265) or Grays(14,278). Hopefully they will have better weather than she and Tony had this last weekend because they were miles from their car and it started to downpour and then hail! And, the last few miles back were uphill to the trail head. All in all, it sounded miserable but Amanda spoke like a true Visscher and emailed that “at least our new hiking boots are broken in” and “I felt like this hike was a little out of my skill level, but I made it, (of course, at some point you don’t really have a choice, you have to finish if you want to get out) it was a good challenge, though.”
And isn’t that it with most difficult situations in life. We can leap, face adversity and unknowing head on, and finish because that is what we have to do.
My step-momish reply… “You did it! I love these kinds of stories – you will tell it over and over… and it show that we can do whatever we set our minds to. And this way… we know when we do have to surrender – then our minds and bodies truly mean it.”
I loved to push myself before being diagnosed with AS. I did some crazy things to prove to myself that I could do physical things. I think I knew quite young and many years before I got very sick that things with my body weren’t quite right so I pushed and climbed, and skied, and jumped. And I’m grateful for every insane thing I did because now I know that my mind and my body really mean it that I can only do so much. I will still push myself only it will be in a different way.
5. Check out the new and improved emails from – The Daily Apple! If you haven’t already done so, please sign up to receive apples in your inbox. The New Daily Apple will include information that I don’t post on my blog including art, health, and of course… apples and whatever strikes my fancy 🙂 Take a look at a sample and sign up!
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.
A lovely woman – a new good friend – asked the question today about how to help with the pain when the meds have run out. That is something I would love to have the answer to because the pain of autoimmune arthritis can be excruciating and when you don’t have the means to get it to break it wears you down body and spirit very, very quickly.
But, I do have a few tips up my sleeve from the years where I promised myself to do anything and everything that might make it a tiny bit better in the hopes that those tiny bits add up to a big enough bit to give even a little relief. I have a “life boat” full of items that help me survive when the pain cannot be handled by simply having the right attitude. My life boat is kept stocked and checked. It consists of emergency pain meds but in this case I’m talking about 11 things you can try when there are no pain meds available. For my readers who do not live with chronic pain – unfortunately with our system of care and the stigma surrounding pain medication many of us have experienced times when we have run out of our prescriptions and there are no refills on the meds we need to take the pain away effectively so we are stuck in a horrible situation. We have to a) somehow get through or b) head to the emergency room. I’ve been there, it isn’t pretty because being in pain apparently doesn’t rank very high on a triage list. So – here are a few coping strategies I learned over the years.
1. A very hot bath preferably with a few cups of Epson Salt.
2. An insense burner. I have the kind made of soapstone where you use a tea light candle under a “well” that holds water that you can place drops of the scent that will help. I use lavender, bergamot, and lemongrass. I know, some of this stuff is going to sound all new-agey but trust me it helps. The brain has to pay attention to the scent – and if part of the brain is thinking/processing that scent then it has less to process pain.
3. A Neck brace. Yup – like the ones you see people wear after they are in a car accident and get whiplash. When my neck feels especially horrible and fragile the brace gives it some wonderful support. I’ve had to wear it at some pretty embarrassing times, like the morning after my brothers wedding. I had just started on Remicade and I was a mess but I got through the night. I’m still very glad that I’ve never seen the video footage of being on the dance floor because I’m quite sure I was doing a cross between the white man overbite and the penguin waddle. But I was there.
4. SI Belt – Ask your PT or Physio about one of these. I love mine and I use it to garden and do anything physical. It is an adjustable belt that you wear low on the hips (about the height of your SI joint) and it goes under your clothes so no one needs to know but it is again something that helps me get some extra support.
5. On the lines of items that you can own but I’ve gotten from my PT/Physio – I have tape that is similar to the stuff you see some athletes wear on areas that are weak – remember Kerri Walsh, the Olympic volleyball Gold Medalist wore that strange piece of tape on her shoulder – same idea. Usually my PT/Physio will tape up my back but if I need to – my husband can do it in a pinch. I love having my back taped although I don’t do it too often, when I do it helps my back so much!
6. Music! I find that the spa type music is perfect for me but it is the same concept of occupying you mind. Whatever works for you.
7. A Supply of various heat producing patches that you can pick up at the drugstore. These do help – remember, we’re looking for tiny bits that help make a bigger impact.
8. Eye Mask – Many of us with AS have eye issues that create severe sensitivity to light. Even when I’m not flaring I find that sleeping with an eye mask helps give my eyes a break and helps prevent the pain of a headache behind the eyes. I love the Tempur-pedic mask but they are $29. I bought my first mask in Las Vegas. I was there for a trade show back before my diagnosis and I was so sick. I could barely open my eyes. I would later find out I was experiencing the first in a series of undiagnosed iritis flares. If you’ve had one – you know how horrible and dangerous they can be. When I wore that mask out probably 5 years later – Doug found a perfectly decent one at Wal-Mart for about $5! My only issue with this is that I can now no longer sleep without it. Look for the big pillow type of mask or treat yourself to the Tempur-Pedic one!
9. Touch. Not Sex – that is the last thing I want when I’m in pain but I love having my hair brushed. It is another sensory distraction that works. Maybe for you its a back scratch or simply having someone hold your hand.
10. Understanding of friends and family. A little empathy goes a long way.
11. Laughter – put on a funny movie or your favorite sitcom. A list of some great ones is below.
What are some of the little things that help you? Please add a comment with your suggestions.
4. AS Blogger Spotlight – Jennifer from Live Art.fully writes a beautiful blog. She talks about art, her family, and living with chronic illness. I love Jennifer’s writing and I love hearing her anecdotes about her two sweet and bright little girls.
I guess this sums up where I’m at with my Art Apples. Drew this in my sketch book and tore it out to scan. I’m so happy to be home for a visit and I love being in Maine! Tomorrow we head to Vinalhaven for the weekend for family, wine, and lobster!
Wow – I was delusional as to how long this would take. Four hundred pieces of quarter inch cut outs from magazines – what was I thinking? Doug got home around 10pm and sweet wonderful man that he is started searching for colors for me. The edges were the most difficult. But, I love the results. Hope you all like it too!
***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!
