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One Lucky Autoimmune Mom: Strength, Courage & Laughter

one lucky autoimmune mom“Sometimes I worry that my disease will taint their childhoods. Then I think of what my scleroderma can teach them.”

Playing games on the floor, bicycle riding, swimming, boating, hiking, running, rock climbing, surfing, skiing, scuba diving, and horseback riding; all activities my kids have asked me to do with them. Oh, how I wish that I could do all these things with my son and daughter. The reality is my autoimmune disease prevents me from enjoying these forms of recreation.

When I was ten years old, I was diagnosed with scleroderma; a disease that causes hardening of the skin. The symptoms of scleroderma vary greatly for each person, and the effects can range from mild to life threatening. The seriousness depends on the parts of the body affected and the extent to which they are impacted. I have lived with scleroderma for 30 years and am supremely grateful that for many of those years, I’ve enjoyed a relatively stable health status. Of course, I endure chronic pain, disfigurement, Raynaud’s Phenomenon, excruciating calcification deposits, blah blah blah…. Nevertheless, until 2006, I counted myself lucky to be living well and not in imminent danger of scleroderma influencing my life expectancy.

All that changed in 2006, 12 hours after I gave birth to my second child. I had a high-risk pregnancy and was dutifully visiting my obstetrician weekly. Despite this close monitoring, my scleroderma masked some symptoms of preeclampsia. Unfortunately, my preeclampsia went undetected until after I had given birth. What began as a postpartum ileus spiraled out of control and led to 218 consecutive days in the hospital. During the seven months following my daughter’s birth, I underwent eight major surgeries, lost my colon and spleen, had two tracheotomies, and experienced I.C.U. psychosis, neuropathy, cardiac arrest, and temporary total paralysis. For many months, I could not eat, breathe, speak, or move. My husband cared for our newborn and 3-year-old while I teetered between life and death.

I believe that my son and daughter saved my life. During this difficult period of my life, all I wanted to do was go home and be a mother to my children. Knowing how much they needed me, strengthened my resolve to claw my way back to them. When I finally returned home in a wheelchair, I faced 6 more months of intensive physical, occupational, speech, and respiratory therapy to regain my ability to walk, eat, and breathe independently. There were plenty of times I wanted to succumb to my illness, but somewhere deep in the crevices of my heart and mind, I knew I could not leave my kids. I was fortunate to be surrounded by a tremendous medical team, a family that held my hand and refused to let go, and the most incredible circle of friends. This exquisite tapestry of support carried me through my darkest days and I made a remarkable recovery. I am thrilled to be back to just having plain old scleroderma.

Please don’t think that because I survived a near-death experience at the age of 31 I now eat rainbows for breakfast and live every moment drinking in life’s sweet nectar. Animated leprechauns do not follow me everywhere I go singing a happy tune. I have gone through periods of depression, self-pity, and low levels of self-esteem to name a few. I struggle to balance motherhood, marriage, and my career like most women in America. Some days I do it well and other days I fail miserably. The important thing is that I get to wake up each morning and try again.

There are a lot of things my autoimmune disease keeps me from doing, but living a fulfilling life isn’t one of them. Like all of us autoimmune moms, I fight through intense pain to be the best mom I can be to my son and daughter. Sometimes I worry that my disease will taint their childhoods. Then I think of what my scleroderma can teach them. I hope they’re learning that we can derive strength from suffering and courage from beating tough odds. I hope my husband and I are modeling the importance of resilience and maintaining perspective. Life isn’t fair, but it is wondrous. When they reflect on their early years, I know they’ll remember the things I wasn’t able to do for them because of my disease. But I hope those thoughts do not take center stage and they instead carry with them the values we’ve instilled and joyous memories we created as a family. I hope the soundtrack of their childhood is laughter.

Snuggling in bed reading a book together, art projects, science experiments, helping with homework, driving carpools, packing lunches, planning birthday parties, coordinating playdates, attending ballet recitals, basketball games, and chess tournaments, taking nature walks, vacationing, baking, volunteering, debating politics, and laughing; these are just a few things I get to do with and for my kids. I am one lucky autoimmune mom.

 

About The Author
Lisa Goodman-Helfand is a married mother of two living near Chicago. In addition to her career as a reading specialist, she recently launched her blog: Comfortable in My Thick Skin (comfortableinmythickskin.com). Lisa is passionate about patient advocacy and raising awareness for autoimmune diseases.

This post contains opinions of the author.  AutoimmuneMom.com is not a medical practice and does not provide medical advice, diagnosis, or treatment.  It is your responsibility to seek diagnosis, treatment, and advice from qualified providers based on your condition and particular circumstances.  Camino Real Ventures, Inc., the company that makes AutoimmuneMom.com available to you, does not endorse nor recommend any products, practices, treatment methods, tests, physicians, service providers, procedures, clinical trials, opinions or information available on this website.  Your use of the website is subject to our Terms of Use and Privacy Policy

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Comments

  1. Kim Hofman says:

    So beautifully written!

  2. Your story brought tears to my eyes. Thank you for posting this.

  3. “Life isn’t fair, but it is wondrous.” Good words to remember. Also to add some laughter to the soundtrack of our lives…at every age.
    Thanks, Lisa.

  4. This is amazing

  5. Eileen Richter says:

    This was just what i needed. I found your post from an “invisible diseases” Lyme Facebook group post shared. I am 14 years sick, my youngest was just 18 months when I crashed. My son was 4 and then the older 3 were able to do their own daily care. I crawled at first and have months at a time that take me back to this. Feeling so inadequate and loosening mySELF from life has been harder still than the actual medical malady that has stolen the me I used to be. (a collection of Lyme, Thyroid Hashimotos, Chronic Fatigue Syndrome and Fibromyalgia, etc, etc, diagnosis) A menagerie of medical mayhem, it doesn’t matter what it is that tries to take us, it matters what we DO to fight and allow ourselves to live still, and without that nasty guilt slicing through you every day. Thank you for reminding me that although I have missed much with my kids, the youngest now 15 and 17…I hope they remember I was still there FOR them and here WITH them. And that is all that is necessary most days.
    Girl hit your hallelujah! This was a great post!

    • Thanks Eileen for taking the time to read and write such a beautiful comment. I completely agree with you. You inspired me to put on Uptown Funk by Bruno Mars and dance with my daughter this morning. We had a crazy good time and truly danced like no one was watching because no one was:) Wishing you good health and happiness.

  6. I have had scleroderma since I was 5. I suffered preeclampsia also, and was in the hospital 52 days on all kinds of drugs to try and stay pregnant. I’m always scared I will be taken from my daughter to early, or that I can’t do all the things with her that I want to. She’s 3 and already tells me to go lay in bed and rest. It’s heart breaking that we spend so many days in bed reading or watching Netflix. Silver lining is that she enjoys old musicals, and black and white movies.

    • Hi Shannon-
      I am shocked to hear you’ve had scleroderma since you were 5. Wow, I was told being diagnosed at 10 was extraordinarily rare, so I can’t imagine how rare it was at 5. Wishing you nothing but good health and happiness. Also, as a reading specialist, I can tell you that reading with your daughter in bed is a wonderful thing 🙂

  7. As a fellow mom of three living with scleroderma, this made me cry. I try everyday to focus on the I cans but some days the I can’t s get in the way. Please keep up the inspiring writing, I love it.

  8. Katie Cleary says:

    I was so honored to have Lisa’s post added to the collection of wonderful autoimmune mom stories. As I told her after I first read it, I laughed and cried. There is so much beautiful truth here. It’s one to read again and again.

    Thanks to all who shared their poignant thoughts and memories here. You are all amazing moms!! xo

    Katie
    founder, AutoimmuneMom.com

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    REGARDS

  10. R.J. Marvin says:

    Hi Lisa, my name is RJ Marvin and I live in Ocala, Fl. with my wife and 5 kids. I just read your article on Yahoo and was very touched by it. My schooling in the medical field helps me to understand your condition and how painful and hard it must be to get around especially in the “windy city”. I used to live in McHenry and my wife grew up in Schaumburg so we both know how brutal the winters can be and to add your condition only escalates it. It is encouraging to hear how you can be strong but at the same time be human and feel vulnerable to the point you tear-up. There have been many times that I have seen people park in handicap or fire lanes and wished that I had been born police officer dedicated to enforce the laws that govern those two specific situations. Many people do not understand what it is like to be in pain and don’t care which is a sad statement to make but true one. My hat goes off to you and I hope that you get better and that anybody who reads your article will pass on the importance of being considerate of those who are truly handicapped and not park in designated spots. blessings to you and your family and keep your head and good work up. R.J. Marvin

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