Fluctuations

As I drive to dialysis, I greet the dawn of the New Year. It’s been a year and a half since my kidneys stopped working, and my journey to kidney recovery began. Stronger, healthier, and happier, I’ve grown in my depths and abilities as a human being beyond what I thought possible. As a perpetual giver, I’ve had to learn to receive. I’ve learned to stop sacrificing myself and my health. If I’m not healthy, then I can’t possibly offer help to others. Raised to be fiercely independent, and taught to rely only on myself (and the Divine) by an endless stream of takers, I didn’t know how to open up to the people offering hands and hearts of support. Now I am willing to ask for help, a hug, or a place at someone’s holiday table.

The holidays were a mix of emotion, as I continued to face the difficulties of my family and various past friends refusing to take my situation seriously. Perceptions are unique, and everyone has struggles in life. Just as I recognize that the nurse in Trinidad, who immigrated there after surviving horrific atrocities in Rwanda, has been through tragedies that make my kidney failure look like a walk in the park; so should people see that a minor cold, sinus infection, or battling a few pounds doesn’t compare with the immediate and ongoing life-threatening reality of losing an essential organ’s function. The tragedy of kidney failure has certainly clarified the relationships in my life.

I’ve been reluctant to confess my disappointment in my family’s support, and how the lack of compassion from previously close friends has hurt me. I’m not generally one to complain in life, but any major health crisis often means a loss of more than just one’s bodily well-being. The impacts are also felt emotionally, and psychologically. In mentioning this, perhaps more people will reach out to others, as even the strong and capable need assistance when they are hit hard in life. Thank you to those, who have reached out to me, checked up on me, and made sure I could pay my bills.

The prospect of sitting home, alone, on Thanksgiving drove me to post on my private Facebook page: I offered homemade pie in exchange for a seat at a table. Old friends, and new ones, opened their homes and hearts to me over Thanksgiving and Christmas. Memories of easier holiday times surfaced, and I ached for the days when I used to gather with my family. Now each of my family members is caught up in his or her own life, and spending time with their friends and in-laws, or playing video games is more important. I yearned for my grandmother, Patricia, the matriarch of the family, the glue that held the family together. She led by example and word. Her grace, hospitality, and generosity still shape me today. And her pie-making lessons allow me to make flaky piecrust.

At the same time I was grateful to be alive during another holiday season. I relished being able to travel north a few hours, and skip dialysis on Christmas Day. Riding in the car’s passenger seat, while watching the change in scenery, brought me happiness. Seeing my name on a stocking, and the lovely little gifts in it on Christmas morning went a long way in making me feel welcome. The previous year I spent Christmas alone.

Vinyasa yoga in a new place was as life affirming as always, and I marveled at the ability of my body to move into the asanas. Ice skating encouraged me to stretch my body in new ways, as I savored the cold and pushed myself around the rink. The blinking lights in the darkness of the laser tag room enticed me to let go and play. I’d found another thing to enjoy, and a way to release the energy and emotions within. Conversations, delicious cookies, bouncing black squirrels, and winter rainfall closed out two thousand and twelve.

Over the last few months, the stem cell treatment has been working its magic. The day the length of my dialysis treatment was reduced to two and half hours per treatment was an exciting day. I regained three hours of freedom per month! My blood pressure has dropped down to normal with lower and lower levels of medication. Many of my blood tests are now within normal range, and my weight has stabilized. There have been fluctuations in test results, ups and downs in my creatinine and BUN levels. The biggest change is how amazing I feel, and I am brimming with energy. My immune system has become resilient, and I can feel the difference in my body.

Now it is a waiting game. I believe that the worst of it is over. Undetected infections have been found and treated, so that I no longer have ongoing inflammation in my kidneys. I’ve gone nine months without any visits to the hospital. Each day I wonder how much longer I must tolerate the temporary residence of the catheter in my chest. I no longer feel sick. I no longer feel like a dialysis patient.

Time passes by, and each second draws me closer to the end of this particular part of my life’s journey. I’m excited to see what lies ahead, as I carry the Light along a path that reveals itself with each passing breath. It may be a path that only I see, and I hope sharing it with you brings some Light into your life.

A lifetime is an opportunity to experience God in a different way. Every moment propels you closer to recognizing this essence, your Spirit, within yourself and everything around you.

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17 Comments (+add yours?)

  1. Al Mitrani
    Jan 08, 2013 @ 13:33:14

    Happy New Year and keep on progressing!!!!

    Reply

  2. Lauren Pressman
    Jan 08, 2013 @ 13:43:34

    Thank you, Jennifer, for your update. I’ve been thinking of you alot, wondering how you are. I’m so happy for you and your journey towards recovery. Lauren

    Reply

  3. Gary Leonard
    Jan 08, 2013 @ 14:40:17

    I’ve been wondering how you have been doing for the last couple of months..
    I really appreciate the update.
    Lets all pray for the road to good health..
    Gary

    Reply

  4. Kim Phebus
    Jan 08, 2013 @ 15:10:36

    Jennifer, you are such an inspiration to others. God bless you Jennifer and know that you have many people who care about you and love you and I am one of them.

    Reply

  5. lisa
    Jan 08, 2013 @ 17:48:06

    Beautifully written Jennifer! Blessings on you! I too, am one of the blessed ones to have had stem cell therapy and have seen my hips regenerate… another chance at life and so much to be thankful for! May blessings continue to flow in your life. Lisa

    Reply

  6. Stacey
    Jan 08, 2013 @ 18:21:44

    I am so glad you posted this update finally! Continue to stay positive towards life and take care of yourself. God bless!

    Reply

  7. Donna
    Jan 08, 2013 @ 19:51:04

    Jennifer, you express yourself so well. When I read your words, I know I get a glimpse into what my dad is feeling but cannot express. He has been on dialysis for almost two years and has many times felt like giving up. The last time was just before Christmas. His doctor was able to encourage him and give him a renewed hope that he will get a transplant. I have been following you in hopes that the stem cell treatment works and we can pursue that for my dad. Keep the updates coming and hang in there. We are all praying for your complete recovery. May God bless you – as I know that you will in turn bless others.

    Reply

  8. Peggy Carlaw
    Jan 18, 2013 @ 19:39:44

    You look just beautiful in the video. So glad your health is returning. And what an inspiration you’re providing for others on a similar journey.

    Reply

  9. Cate Benish
    Jan 19, 2013 @ 10:55:03

    Expect Miracles!

    Reply

  10. Jonathan
    Jan 19, 2013 @ 11:46:24

    In Australia, read your story about you and Ty online.
    It was good again to see that human spirit can be so giving, so cool.
    BTW I am a Cancer survivor too. (I’ve never said that out loud or in print)
    I will follow your blog, I hope you find peace during your dialysis treatment.
    Yes yearning for more is good .. but see the more you have already received.
    Imagine now the scenery you have painted for others who have now read your story and Ty’s gift and realize that good things do happen, and can see it.
    Keep strong, but moreso, keep good.

    Reply

  11. Dan Marchiando
    Jan 24, 2013 @ 12:54:53

    Hi Jennifer,
    I was thinking of you in the New Year and wondering how you were doing, and remembered you had this blog. I was happy to read that you are improving and feeling better in spite of all the challenges. Take care, and hope to see you out and about Santa Barbara.
    Dan

    Reply

  12. Dawn Dover
    Jan 27, 2013 @ 13:15:42

    The pain of not having family see your plight is unbearable The damage is so rough on our entire beings. I know this well. The decision to break away and
    to experience life is one of the most difficult things one can face, but the immediate relief is clear, making it known to ourselves to be the right choice. Never does it go away completely, because you love them, but to treat yourself with the love and kindness you actually DO deserve, becomes the clear choice and path to wellness.
    God bless, and may you have continued growth in your human experience!!

    Reply

  13. Joyce
    Jan 29, 2013 @ 07:47:35

    Jennifer, I have only read your post today so I am late in wishing you continued success on your journey. As someone that has leukemia, albeit the “best” kind, I don’t know how I would feel if my family refused to support me or understand the struggles that disease can bring. My heart ached that your family would not feel supportive for you. But, you have found the strength to move forward and find new “families” and friends. Sometimes people refuse to understand until they “walk” the walk themselves. One would never wish that on someone but it is true that experience is a marvelous teacher.

    You keep up the work and stay positive for that is the way God helps us help our bodies. I wish for you the MOST WONDERFUL 2013 and God’s greatest gift of Health!

    Reply

  14. mumofthree
    Feb 13, 2013 @ 13:46:07

    I am a mother of a beautiful brave 7 year old little girl who has FSGS. I can only hope that one day stem cell treatment will be her saviour. You offer hope and admiration to us, we wish you well and look forward to your reading your blog.

    Reply

  15. Abhishek
    Mar 31, 2013 @ 00:26:42

    Really inspiring approach to life, treatment and positive thinking. I am some one who shares a similar fate and know your plight.
    Keep living, keep inspiring, stay in touch

    Reply

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