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.
