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.


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.

26 Replies to “Day 350 – My Mom’s Perspective”

  1. I am sobbing. Jenna your mother is amazing. As she described SO MANY of the exact same things I went through or am going through now, I truly felt her love and pain just pouring off the screen. I’d give anything to meet your mother. Hug her. Maybe see if she would adopt me.

    For some of us the hardest part of AS is feeling so alone. We don’t have a support system. We lose friends. Family members zone out when you talk about your fears…

    Jenna, your mom sounds like the best person to have by your side… Wow. What an understatement

    Jenna’s mom, thank you. You said so many things I long to hear from my loved ones. My Dad in particular. I take great comfort that my friend Jenna has you. I wish we all did.

    1. We received your huge box of apples today. They are wonderful and so are you for organizing and putting this together. I hope we can get them all up in the room to make a huge showing for everyone who comes tomorrow and Saturday. I’m quite anxious about it.
      I don’t know how long you’ve been diagnosed, but some of the things you mention in your comment are things that happened to Jen. You are helping yourself heal by reaching out to others and bringing more awareness. I’m proud of you and you are not alone with so many caring AS people around you. Take great care of yourself.
      I hope we meet someday.

  2. Although it is absolutely painful to read a mother’s perspective of seeing her daughter painful, sick, depressed, confused, overwhelmed, frightened…yet is inspiring to see such love and dedication. It is not the case with everyone who is ill. As many with A.S. will never have the ability to do certain activities due to the fragility of our composition. There are others who are not capable of giving any level of support; emotional, spiritual, financial, mental, physical.

    For me…I have suffered greatly with this disease but perhaps worse than A.S. the pain of apathy from those who should naturally support perhaps has been a worse fate of suffering than even the disease and its associative conditions/diseases.

    Jenna, you are blessed beyond comprehension to have such an amazing family. The care that they have for you is a great, great gift. To have someone present in suffering is as difficult for those who love you as the perils of fighting this challenging disease.

    For those of us who have been tormented, we understand what we need in order to cope with a present that is terrible and a future that is frightening. We must remember that others have similar struggles. It may not be called Ankylosing Spondylitis but suffering knows suffering. We must allow our condition to make us more sensitive people to others who are in pain. We have the “gift” so to speak of personal experience that can enable us to be a blessing to others.

    Every single Apple is an inspiration and encouragement to all who admire the creativity and beauty of Jenna’s work. She has inspired us with her words of encouragment. She has used the disease in such a way to bring hope for A.S. sufferers and visibility and advocacy for a disease that seems still so unknown.

    Both of you ladies can be very proud of the personal accomplishments you have had. Miss Susan you and your husband have raised an amazing daughter. Although I realize that your individuality and gifts are probably many…if raising and caring for your precious one was all that you did, you have given this world a great gift.

    Love to You,

    1. Your words are so very kind. I assure you that I am just a regular person trying to cope with Jen’s illness and journey to bring awareness in this world to AS. I’ve learned a lot along the way; too many AS sufferers are alone in the battle; too many have not found the right treatment; too many are brittle to the point of breaking and not just from the illness. I hope Jen’s efforts will continue to help bring those who suffer from AS more understanding from those arround them. I always pray for more understanding in the world. Thank you for supporting us and for your fight.

  3. Thank you Jenna for sharing this story. I’m sure my Mom could write a similar story as to what I went through for 3 months in 2000 when she had to rush me to the hospital four times with severe back spasms and pain. What made it even rougher was the fact that I am an only child.

  4. Thank You Susan for putting everything into words of a journey with a child with AS. I too have followed on this long path with my daughter and it has not been easy, but LOVE for a child makes it bearable.

    1. No, Judy, the journey is hardscrabble. There are so many abrupt turns, and potholes for the unwary. I know what you mean when you say that love makes it bearable, but it also makes it unbearable and sometimes you want to run away, but you can’t and we won’t. Hugs to you and your daughter.

  5. Susan & Jenna,
    Thank you for your support. Each time we spend with Jenna & have seen her in pain she still manages to smile & is without a doubt one of the most gracious people I know. You are definitely the type of mom we would all have loved having growing up & I am so grateful Jenna has such a supportive family with such loving parents. When Doug & Jenna found each other I felt a true happiness in both & was so happy when Jenna became part of our family. Reading your story has shown why Jenna says her Mom is her best friend. Big sis xoxo

    1. Thank you Diane for posting here and your kind words to me and to Jenna. Families are dear and to be held close. And yes, I know you have seen her pain. Each time you posted means to much to her. Hope to see you in Colorado this year. Congratulations to Cristin for her upcoming wedding. Enjoy that beautiful time with your daughter.

  6. Such an emotional story .and another great apple.

    I cannot express in words what I felt as I read this story. Instead I’m going to say thank you to both Jenna and Susan for sharing. You can feel the positive energy that flows from this site, this project, and the people behind it.

    I take great pride in the feeling of inspiration I take away from visiting this site everyday.

    1. Vic, I don’t have enough words to thank you for your support. All your comments have meant so much to Jen and me and were inspiration when the going was tough. Your comments are always unusual and insigthful, too, and enjoyed for their content as well as their encouragement. This sounds a bit stiff and I don’t mean it too. I just want to thank you.

    1. Kelby,
      Thank you fro the bottom of my heart for your friendship with Jenna and your support. This is such a tough journey for AS sufferers. Jen tells me your journey is particularily difficult right now. I send you all the light I can to light your way. Take very good care.

  7. It was touching to read your mom’s POV. As you know, I was lucky to be able to share my parents’ POV as well. I plan on sending my parents this post to read as I’m sure they’ll enjoy the connection.

  8. Thank you, Susan. I am just beginning this journey with my daughter – she is 16. It is so hard to watch the pain from the disease (also Psoriatic Arhtritis), not to mention the pain from the injections. She is so brave, and I try, but I’m not as brave as she is. Jenna, thank you for all the apples – you have been an inspiration and a hope. It’s not always easy to read your posts, but I’m always glad I did. I wish you all the very best.

  9. I think us doctors, while we “understand”, don’t really understand. Thanks for sharing your experience and thoughts. It will help me be a better rheumatologist & patient advocate.

  10. Susan,

    I was just about to go to bed when I saw this post. I’ve read it – twice, and the tears are still rolling down my face.

    Thank you for this amazing account of an amazing woman! I felt Jenna’s pain, struggle and frustration as well as your sense of helplessness watching your daughter fight for her life.

    I can see how the apple didn’t fall far from the tree (pun intended). I sense your strength, resilience, unconditional love and determination to live – just as I sensed that in Jenna the first day I “met” her.

    Thank you again for sharing your heart with us. I am sure you are overflowing with pride this week as she culminates this amazing project. Bravo!

    Much Love,

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