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 338 – An un-Saturday, Saturday Apple

I was all ready to post a Saturday Apple.

In order to attempt to have a life that went beyond apple making, I instituted the “Saturday Apple.” These apples have often times been simpler images with almost no post. The decision to reel in my apple life on Saturdays may have saved not only my husband’s sanity but mine as well and I have come to look forward to them as much as I’m sure Doug has.

But today, after completing my apple I saw a post on Facebook about the risks of taking biologic medications. These are fairly frequent conversations – as they should be. Taking biologic medications are a serious decision to make and everyone has to decide for themselves what choice is best for them. I have people ask me about how I decided to start on them quite often since I speak on this blog about how effective they have been in my case. For me, it was a choice to do anything to stop the suffering I was in regardless of consequences. Luckily and fortunately – it has worked for me and I feel blessed everyday I’m better. If tomorrow it isn’t or I become ill – I will never regret that I have been given these last 5 years back.

What struck me about the question tonight that was so different than usual discussions was that a physician told this person that they would absolutely not prescribe them unless the patient insisted because of increased risk of getting cancer. Here is a report about this exact topic that came out a few months ago at the yearly EULAR conference. EULAR is the European League Against Rheumatism. The report shows no increased risk.

…..

…….

Yes, I was a bit stunned by this too.

I’ve decided to not pass judgement or write a commentary on this. I’ll just report what I heard. But what I would like to say is that there are risks to everything in life and most certainly in this crazy world bad things unfortunately happen all of the time. I choose to live for today and not worry for tomorrow – it is my personal decision – I’m not advocating my choices for anyone else. People unfortunately get cancer, we get AS, we have heart attacks and life is difficult – I’m stunned everyday by the tragedy and difficulties that people have to endure. I just don’t want people to suffer needlessly – for any reason. Naive and idealistic, I know but that is what I wish for as a person working to raise awareness of a painful and often times debilitating disease.

Until tomorrow.

Jenna

Day 338 was created in watercolor, pastel, mesh origami “paper”, polka-dot paper, thread, ribbon, and a stick pin.

*** I encourage and appreciate debate – please feel free to comment and disagree. Our shared views only help one another and increase understanding of how difficult it is to live with a chronic illness.

Day 329 – Pin Cushion

Art Apple - Day Three Hundred Twenty NineInfusion day always feels a little like human pin cushion day!

My infusion nurses are awesome and my nurse today knows and empathizes like few could – you see, she too has AS.

I’ll be feeling great in no time – love my Remicade but it does knock me flat for a day or two so I’m going to cut my post a bit short tonight…

Until tomorrow.

Jenna

Day 329 was created with a piece of 140lb water color paper (nice thick strong paper) a bit of beige metallic embroidery thread and lots of pin pricks!

***Added 8/26/2011 – I was so tired last night so I didn’t let you all know where the inspiration cam from for this apple but I want to make sure to link now. Here is the amazing work that inspired this apple. Her pieces are much more involved and intricate and I’d love to experiment with this technique more and learn how she does what she does!

Day 299 – I’m Alright

Art Apple - Day Two Hundred Ninety NineI am so much better today.

Thank you to everyone for letting me have a moment. Sometimes in life I think we just need to let it all out – oy – I guess I did! I had my infusion today so the pain has already subsided some.

Remicade can really wipe me out for a few days while the magic TNF blockers grab hold of the inflammatory cytokines and render them ineffective. It’s like my body just wants to put energy to making sure the protein gets spread around and finds all the places it can go to work.

Exhausting work 🙂

I’m Alright makes me think of the Kenny Logins song – so here you go – take a moment to go back a few years, think for a moment about Bill Murray and Caddyshack and remind yourself, like I have needed to do today. We are all – alright!

Until tomorrow.

Jenna

Day 299 was created in pastels.

In The Studio

1. Countdown – 66 days to Apple-A-Thon!

2. In The Studio Today

3. Apple Recipe of the Day – From a new AS friend Kate – Wonderful Recipe, Gorgeous Photos, and a wonderful person too!

4. Interesting Article Of The Day – If I had just done marshmallows!

 

 

 

Day 270 – The First Wealth is Health

Art Apple - Day Two Hundred SeventyThe first wealth is health. – Ralph Waldo Emerson

Doug and I are headed to Maine for the Fourth of July holiday. I’ve been furiously working to make sure I have everything in order…

Shorts, flip-flops, and fleece (it is summer in Maine)

Art supplies – check.

Someone to house sit and take care of the beasties – check.

Infusion? Humm, yes tomorrow – check!

A life with auto-immune arthritis is planned around infusion dates to ensure they line up with events in life that will take a bit extra uumph to get through. I’m thrilled that tomorrow I get hooked up to my i.v. of Remicade so that our week with my family will be a bit easier and my energy levels will survive the cookouts, fireworks, and water-balloon fights! I will happily plan my life around the medicine that allows me to enjoy these events with a bit more gusto.

Until tomorrow.

Jenna

Day 270 was created in currency and paint.

In The Studio

1. Countdown – 96 days to Apple-A-Thon!

2. My process photo from today.

3. Apple Recipe of the Day – Red White & Blue Candy Apples!

4. Interesting Article of the Day – Your Paintings – this is so cool! (thank you to my friend and fellow autoimmune arthritis (RA) warrior Naomi Creek for the link)

 

 

Day 221 – Beautiful Friend

Art Apple - Day Two Hundred Twenty OneI have a beautiful friend named Stacey.

I met her a couple of years ago when I ventured slowly back into the work force after years of being so very sick with AS. After my eventual diagnosis I thought I was ready to dip my toe back in and see if I could handle the many pressures that come with a job. That sounds odd to most – of course I should be able to handle a job right. Hummm… here were my worries:

1. Would I be able to sit on a chair that would most likely be extremely questionable and super inexpensive.  Wal-mart “task chairs”  have their place in this world but they tend to become the ones pushed in front of most desks these days and especially in front of the part-time job desks. A chair seems like a very silly worry for people looking for work but for people with AS, a chair can make or break your ability to do your job. And once being hired and realizing that the chair is less than adequate for an AS body you ask yourself if you can gut it out because the last thing you want to do at a new job is alert HR to a possible disability or OSHA violation. So the chair prospects were enough of a worry to keep me rooted to home.

2. My brain had been so under flexed for so many years and highly medicated. I was worried that I might not be able to mentally do the job. I just didn’t know. Many medications for pain, muscle spasm, sleep issues, and nerve trouble can really sap the regular thinking process let alone the new information I was looking to acquire working part-time for a bankruptcy attorney. Could I think quickly enough? Could I learn the new material? And, could I cover the times I couldn’t recall fast enough or find the proper word for the discussion? I had no idea.

3. Infusion times and dates – how was I going to explain the need for a day long absence to get the exact biologic medications that gave me my life back and had me thinking of working again? What would I do and was it “fair” to not disclose this information to my prospective employer?

4. What if I couldn’t do it? Who was I kidding – I had AS – I should just be looking for a disability attorney and filing the necessary paperwork.

These were some of the thoughts that went through my head. The self talk of should I attempt to go back into the work-force were intense at times but I had another big motivating factor. My husband had been laid off in the 2009 bust and our COBRA was going to eventually run out. My biggest motivation became my health care and my medications.  I was not going back to the days before my medications – to the days prior to a diagnosis. No way. No how. So I picked myself up and put my resume together with a few missing years that I hoped could be explained away. And, yes… I explained them away with a story that was plasuible but didn’t paint the entire story. I was trying to start a family – and it didn’t happen. Who would have hired me if I had shared the whole picture and I knew that legally I didn’t need to tell. So I didn’t.

What does this have to do with Stacey?

It’s Stacey’s Birthday today and I met her thankfully because I was able to go back to work. I was in fact so able to go back to work that after 7 months working for the attorney I got a job with amazing benefits working full time. Of all of the wonderful things that have happened to me in the past few years I rank meeting my dear, lovely, and amazingly beautiful friend at the top.

Happy Birthday sweet lovely friend. I love and adore you!

Until tomorrow.

Jenna

Day 212 was created in mixed media for Stacey Ballow’s Birthday – she just turned 29 – again!

Day 137 – Topiary

Art Apple - Day One Hundred Thirty Seven
Art Apple - Day One Hundred Thirty Seven

I love to garden.

It amazes me to see something come to life from a seed or a dormant bunch of twigs. For me it’s a way to paint with living things and I’ve always been very interested in trying my hand at topiary. Country Living had an article last year or maybe two years ago that showed how to create a simple rooster. So, I bought a couple boxwoods thinking I’d just follow the directions and viola! Yeah, right – they looked horrible and I found out that boxwoods don’t like my super dry climate or the 6200 ft. elevation. Some day I need to live where things actually want to grow!  And my next attempt will be an apple 🙂

I had my Remicade infusion today so my thoughts aren’t forming well. I think I just need to call it a night for today since the medication packs a big punch and makes me so tired for a day or two.

Until tomorrow.

Jenna

*** Welcome to all the new folks and keep posted for tomorrow – I’ve got three new guest apples to post!!!! ***

Day Ninety five – Appily Infused.

Art Apple - Day Ninety five
Art Apple - Day Ninety five

Aaaaaahhhhhhh!  I received my Remicade infusion this afternoon.

The vitality this amazing drug gives me is slowly working its way into and around my cells, blocking all those crummy little immune attackers that are friends to most people’s bodies.  In mine, they go haywire and have a big party.  Without the big pac-man, TNF blockers, I have an immune response that is slowly trying to fuse my spine together (among many other lovely things.)  Before I started taking the Remicade – over 4 years ago now – I couldn’t function from the pain.  I was on high doses of anti-inflammatories, nerve/seizure meds, and heavy duty pain killers including the Fentanyl patch, and a chemotherapy drug called methotrexate.  In February I will celebrate a three year anniversary of going cold turkey off all pain killers (well – I don’t count Advil) and I now only need my infusions, but…

Want to know what keeps me up at night? – – – thoughts of the Remicade stopping to work or losing the ability to be able to get it for insurance or financial reasons.  I put six little vials on todays image – they are $700 each and that doesn’t include administering the drug or various other costs associated with this medication.  It’s terrifying to even talk about it – but I will because people need to know what this thing called AS does to not only our bodies but our lives.  And, I’ll keep talking about it because such an amazing medication needs to be available to more people who are suffering and have no access to a medication that will give them their lives back.  I’m fighting for them – in perhaps an unconventional way – but they – YOU – are what keeps me going even when it’s easier to just stop.

Until tomorrow.

Jenna

Day 95 was created with pen & a blush of color.

Day Ninety four – a web of shards

Art Apple - Day Ninety four
Art Apple - Day Ninety four

A web of shards – well, I got your attention!

I had no idea what to call this apple so… what do you think?  LoL!

Remicade infusion tomorrow!  I’ve managed to make it to seven weeks!  I really wasn’t sure I could do it but it will definitely help the savings account :0  I’m so looking forward to getting my “rat juice” – that’s what I call it because it’s made with some type of mouse protein and it makes my infusion nurses scream and my fellow Remicade pals laugh.  My Dad has a pig valve and I get rat juice; we are quite the pair!  Better living through chemistry – well, and science and a great heart surgeon for Dad!

Until tomorrow.

Jenna

Day 94 was made with ….. elmer’s glue (the web) and a mixture of watercolor and liquid acrylics.