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Allison’s Story (CRPS, POTS, Gastroparesis)

Allison's Story RSD etcUnbroken Spirit in a Broken Body

Barely conscious, lying motionless, sounds of hurried conversation and hospital machines loudly blare as my heart rate skyrockets beyond 160, my blood pressure falls past 70/30, and my fever spikes to 105. In the ICU, fluids are vigorously pumped into my thin veins as my eyes begin to swell shut, and a blood transfusion begins. Once again, doctors surround my painfully frail and ailing body as I try to comprehend yet another harrowing situation, in which I pray to God that I will evade death once more, for I am only 24. Writhing in agony, I mentally recall moments from the past 9 years in which I’ve endured the treacherous daily battles from severe cases of full body RSD/CRPS, POTS/Dysautonomia and Gastroparesis/DTP, among other illnesses, all of which cause countless unmanageable symptoms and relentless excruciating pain every moment of my life.

Sweet 16 was a dream that never was, for the raging fire, RSD, set me ablaze, maliciously burning from the inside out, continuing to scorch my disease-ravaged body until this day. After waking up from a necessary surgery that was supposed to eradicate my pain, 9 years ago, the RSD immediately inhabited my body like a parasite with I as its host. It only took 3 months to get diagnosed, but it was already too late. Pandora’s box was opened. Normalcy never returned, but brought forth a desire to fight and overcome all adversity. The fire will never consume me, but it consumed the life I once had.

Light stings my eyes. The slightest sounds are deafening. Water feels like acid on my peeling skin. The tenderest embrace causes shock waves of radiating pain. Collapsing to the floor, clutching my heart as I gasp for air, and seeing my world turn to black are not unheard of situations. Limbs spasm, change color and lock, in addition to jaw dislocations. Migraines never end, dizziness remains and everyday stimuli assault my senses. Already unwillingly confined to a wheelchair, now bed.

Tortured by incessant nausea and vomiting, my body becomes unrecognizable. Cracking nails and fistfuls of hair fill my bony hands as my languid body withers away, taking on the appearance of a young school girl. Numerous GJ feeding tubes are placed due to dislodging and infections. Rushed to the hospital, on the brink of death, a painstaking fight ensues yet by the Grace of God, pure love from family and friends, and the nourishment of TPN, my life is saved. Though life is fragile, it is still beautiful.

An abundance of medical packages arrive each week, lining shelves, spilling out of drawers, and filling both fridges. Months of trying hospitals stays occur due to complications and a ghastly amount of serious sepsis infections. Wires, lines and tubes, tangled like a spiderweb with me in the center, trapped with no way out. PICCs and ports are ripped out and replaced nearly every month.

I’ve seen approximately 100 medical professionals, withstood numerous painful treatments, procedures and therapies, and tried nearly 50 medications. Perplexed are the prominent doctors who genuinely care and strive to ease my suffering. Despite my indefatigable efforts, all treatments have failed to bring pain relief or stop the progression of my debilitating illnesses.

When illness infiltrates, no aspect of life is left untouched. Days as a dancer, runner and musician faded, though the passion did not. Forever a runner at heart, I now race for my life in this interminable marathon. Bullies fiercely attacked me verbally and physically throughout high school and college, but I persevered by earning a 4.0, volunteering, and serving on education boards. Stranded on the cold ground, my rigid body motionless, needing to be carried across campus, and sleeping 10 hours a week became routine. Regrettably, several medical leaves ended my pursuit of majors in Special Education and Spanish, but my dreams live on.

Amidst these death-defying perils, God’s blessings illuminate my life. Family and friends who have listened intently with understanding, sincerely attempted to soothe, approached with patience, and enveloped me with compassion, bring me strength. Those who have embraced me and all aspects of my life remained steadfast as we have sat in saddening silence, and given the gift of laughter, leaving me happily breathless, light up my life. Those who remember my past and envision my future, continuously encouraging the pursuit of my wildest hopes and dreams, erase the darkness. Though my body is weak, my mind is strong and my spirit unbroken. I remain forever grateful. Multitudinous battles are ahead, but I will remain fortuitous in my fight, persisting onward with unyielding determination. I may stumble, and I may fall, but it is with grit and vigor that I’ll rise again, for I fight like a girl. I am a survivor.

Allison
Wisconsin
Submitted 02/24/2015

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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37 comments

  1. This girl is a true badass.

  2. You are amazing, Allison! Thank you for taking the time to share your story. It is beautifully written and captures how much you have fought over the past 9 years. You have had to suffer more in this past year than most people do in a lifetime, and you have handled it with grace and a positive attitude. You are truly an inspiration.

  3. Allison, You tell your story beautifully and graphically. You are a remarkable, talented person. Your spirit and perseverance are inspiring. Maintain your positive attitude. I will pray that things turn around for you, knowing that you will continue to achieve all that you can.

  4. Allison

    You, truly, are an inspiration to all as you face this disease. The strength, determination, and “true grit” are a tribute to you and you family. I am sure there are many praying for you . May God continue Bless You and give you strength to beat this.

  5. Dear Allison – you are an amazing young woman. Your strength of spirit and sheer determination to win this battle are incredible. Your story is one I will share with everyone I know – I so admire your courage and commitment to remain positive despite your constant struggle. Keep fighting with all that you have, knowing that your story, your strength and your fight are an inspiration to us all. Please know that you have supporters everywhere – we are praying and cheering for you to stay strong and fight hard…we are in your corner~

  6. The pressures that you have faced over these years have turned your soul into a brilliant diamond. Your soul has become unbreakable and your heart is undamaged

  7. Chuck Karpfinger

    Dear Allison, You are the most amazing person I know and certainly the toughest. You have found beauty, love and joy in your life despite everything you go through. You are a shining example of a life well lived. Keep fighting and loving, Alli! My heart is with you and your family.

  8. Ben Guido "Ali Ben"

    “Though life is fragile, it is still beautiful”
    What startling words from so young a person that has endured so much already in life.
    I received this link from my fellow college wrestling brethren; little did I know how much your story was going to touch my heart and open up this threshold of countless stories that need to be read and shared.
    My prayer for you Allison is one of continued powerful spirit and that God’s strength be at your side with every battle and foe that attacks your body and your passion for life.
    Thank you for sharing your life.

  9. Allison, I can not in any way, shape or form fathom what you are going through. People talk about courage all the time, but rarely is it truly exhibited. You are truly courageous in your very being. You are an inspiration to all of us who at one time may have thought we did something courageous, but truly never have compared to you. God bless you. You are in my thoughts and prayers.

  10. Allison
    I read your story with tears in my eyes and aching in my heart to hear of your constant pain. I found that story to be a true inspiration – a message to all of us that life is precious, regardless of the obstacles we face. While your health issues would seem insurmountable to most you have a phenomenal spirit that speaks to the great gift that is life and love. You’ve certainly made me consider myself fortunate for the health that my family has and also made me feel that I hope that our challenges are met with the grace and fighting spirit that you show daily. Thank you for sharing your remarkable story of courage. God bless you!

  11. Allison,

    You are an excellent writer and incredibly brave human. Every time I started to feel sympathy for you in your story I would read a line such as, “though life is fragile it is still beautiful,” and, “I’ll fight again.” I felt as if you were telling me to save my sympathy for another day and instead to gain some knowledge and insight from your story. To witness your experience from your point of view is something that I will remember and take with me in my life and in my career as a nurse. As I read the lyrics of a song I used to sing with one of my patients kept coming to my head: https://m.youtube.com/watch?v=qQYpF2pCkLI (Young the Giant, My Body). You embody those lyrics Allison. You truly do fight like a girl. Thank you for sharing!

  12. Your voice continues to find new ways of describing an unthinkable life with grace and self respect. Hang on.

  13. Incredible, courageous, inspirational and poignant describe your difficult beautifully written, but true story. More importantly Allison, you, as an amazing young woman, continue to embrace us with your smile, laugh, love and show maturity well beyond your years. I truly believe your strength will encourage many others as they have the privilege to share in your story. God bless you Allison – you fight like a girl! Our thoughts and prayers are with you.

  14. Stephanie Turner

    Allison my name is Stephanie and I would really love to talk to you.. I have CRPS also throughout my entire body witch is very rare because it usually stays in your ligaments which mine started in my feet until I got hit by a tow truck at a red light and it ended up spreading through my entire body and I’ve never met anybody heard of anybody having the same disease I had through the entire body and I was inspired by your story and you’re a great writer and I would just love to speak with you and ask you some more questions so if you could contact me I would love to give you my number so we could talk or if you prefer just Facebook texting that’s fine also just please try to get ahold of me to leave a comment I had to give my email address so I’m sure you have it so please write me!
    Thanks ♡ Stephanie

  15. You and YOUR SMILE are contagious in a very good way. Thank you for YOU!!! You give us all HOPE and lift our spirits. You SERVE all who hear your story, your life, Your Love of Living. Many could learn from you. Thank you again and again. I always pray for you.
    Obviously you are the best with an A+++ . What we in my family call the beast…. A fighter with passion and love and a beastly serving attitude to life directly acquired from those around you, especially your parents!!!

    God bless you and those near and dear to you in all ways for all days.
    Allison you are love.

  16. Mary & Dan Jones

    Hi Allison,
    We have witnessed your courageous in high school and after. Each time we get a chance to see you at a get together – you always have a big smile for all around you. Despite so many challenges and obstacles, your strength and “don’t give in attitude” are examples for many of us. Thanks for sharing your story – we are praying for you – keep on staying strong! Love. Mary & Dan Jones

  17. Mary & Dan Jones

    Hi Allison,
    We have witnessed your courageous ways in high school and after. Each time we get a chance to see you at a get together – you always have a big smile for all around you. Despite so many challenges and obstacles, your strength and “don’t give in attitude” are examples for many of us. Thanks for sharing your story – we are praying for you – keep on staying strong! Love. Mary & Dan Jones

  18. Rick and Carol Fronberry

    Dearest Allison,
    You are an inspiration to all of us. Your courage, strength and faith are amazing and your story so beautifully written and told. Thank you for sharing your daily struggles with the people who love you and your family the most. You remind us how precious and fragile our lives are, and that each day here on earth is truly a gift. You are in our prayers always. Keep up your fighting spirit. You are truly a warrior!

  19. Mike & Mary Baxa

    God bless you Allison. You are truly an inspiration. My heart goes out to you and your family. I lift you up in prayer.

  20. Allison,
    You are truly an inspiration to all of us. You exemplify what toughness and perseverance are all about.
    God Bless You and I will keep you in my prayers.

  21. Miss Healy,
    Your “story” sounds so realistic and true to life. It is almost like you were really there!
    Since I always try and imagine some plausible, positive justification for the crazyness and pain in life, maybe we can see a glimps of some of the few people here who “you have touched” and made an impact in their own lives. ( I am blessed to be able and stare at you for a couple of seconds, every time I open up our refrigerator. ) Unfortunately, you have been an example to many of us silly people who often complain about how bad life has been for THEM. Continue to keep up your Faith, (our Soul is for eternity, and we all need to work on that – life changer).
    Please say a prayer for all the people that care about you, we may need it more.
    Trusting in HIM. your friend, Rick
    ( PS, for your next story, I’ve always like one’s about puppies? )

  22. Bill and Joyce Bezdichek

    Allison, Thank you for sharing your story. No one can imagine what you have had to suffer and endure in your life so far. You are a true “HEALEY” and an inspiration for us all. We all too often take life for granted, yet you fight every single day for your life. I remember when your family came to Ft. Myers for vacation to take in the warm sun and our beautiful beaches. Your Dad told me that when you became tired or that they could not push your chair along the sand, that is when he carried you on his back. Yet YOUR STORY carries us all to appreciate our lives, our families and our friends. You are a courageous and tough and our bodies on earth will at some point be discarded, but our soul and your SOUL will live on forever when we will all meet again where there is no pain or suffering. Will pray for you always, Bill and Joyce Bezdichek

  23. You have found your purpose, to be an inspiration to others. “From caring comes courage.” – Lao Tzu. You have both in abundance. You have and will continue to change people’s live for the better. Thank you for your story of a spirit unbroken.

  24. Ben Guido "Ali Ben"

    Hi Allie, I hope you don’t mind me calling you Allie; your dad used the nickname in an email and I couldn’t resist. My full name is a mouthful, Benedetto, and that is why I go by Ben (the “Ali Ben” comes from a Wrestling story). Just thought I would wish you a beautiful Monday as the sunny is shining and close enough for us to actually feel some warmth from its rays. Praying that you are having a strong day and that a smile comes your way. Ali Ben.

  25. Paul "Munchkin" Clementi

    Allison,

    My name is Paul Clementi and I used to wrestle with your dad at Marquette. He was always one of the toughest if not thee toughest wrestler on the team whether at practice or at a match, and more than anything else he hated to lose. I don’t know you but after reading your remarkable story I know you get a lot of your fierce determination from him and that doesn’t surprise me. I can not say I know how you feel I can only imagine and I don’t know if I would have the courage you display every day. Continue to dream, never stop, continue to be strong, and continue to love all the little things that make your life wonderful especially the people who love you dearly. You are more than a survivor you are a fighter and like your dad and the rest of us used to do you will prepare for the next fight and I know one thing I wouldn’t want to go against you. Be strong and continue to “fight like a girl”. With much love and peace.

  26. Mike & Deb Beining

    Dear Allison,
    Your beautifully written story has touched us both so deeply and it really shows what an extremely strong and positive person you are. Nobody should have to go through so many years of struggles, as you have. And we are so sorry that you have had to deal with such agony. When reading your story Allison, it really made us see the strength and determination that you have in your heart and soul. You are such an amazing and beautiful young woman and you need to keep fighting – for your family and friends – but mainly for yourself. As you can see from all of these wonderful messages that you’ve received – A LOT of people love you and are pulling for you!!!!! We will continue to keep you in our prayers Allison and know you are a strong fighter!! You are truly an inspiration to everyone who knows you – and to those who read your heartfelt message. God’s love to you and your family!

    Love, Mike and Deb Beining

  27. Allison-

    i read your story and, as a parent, I wanted to say give me the pain and spare this person. The truth is, I can’t imagine what you are going through. When daily pain becomes the norm, most would give up.

    Here is my pledge to you. Each day when I get up and feel that life has dealt me a bad hand, I will think of you and your will to push forward. When I see my healthy children and grandchild, I will thank god for the life he has given them. While their mother/grandmother passed away 16 years ago, we are all truly blessed. I am also blessed having learned about you and your plight. My prayers are with you and remember- you don’t have to pin your opponent to win. All you need to do is win by 1 point. You are winning!

  28. Alison: People think wrestlers are strong! You have been living such a challenging life and you have handled each moment of it. You have such strength and determination. You are just amazing!
    Please keep writing. You have a real gift for it and your words will inspire others. They so inspired me.
    I will keep you in my prayers and hope to meet you sometime, so I can tell you these things in person. Feel the hug!

  29. This is in no way an “apples to apples” comparison to the challenges you have faced – but there are parallels – your story and responses made me think of this. I used to play rugby in a younger day, and usually there were numerous times during a match when all the running would get the better of you – you would find yourself “sucking for air” and felt like you needed to just stop & take a break. It always amazed me, at these times – when a teammate would come along & give a little tug on your jersey & remind you that you could still get into the play – saying a little “WITH YOU” to encourage you. By looking a little deeper inside, there was always something more that you had to get going again – more than even you thought you had – to push yourself once more and have an effect on the next play. Anyway, like I said – not an “apples to apples” comparison, but judging from responses to your story, and also from other people that I know are “WITH YOU”, we hope you keep finding that little more – deeper inside – again and again. Keep on being strong! As always you are in our prayers.

  30. Allison,you are such an inspiration to so many people, many you don’t even know. I knew your grandfather well, back in the 1960s, and he was an inspiration to me in my life at that time. The Karpfinger Family is truly a blessed and giving one. I have passed your amazing story on to my seven children and 29 grandchildren. Be assured, you are in our daily prayers. Keep up the wonderful fight!, knowing that God will reward you for your many difficult trials. The Philip Buerk Family

  31. Hi Allison. Was Just thinking about you, as I am sure many of the people who commented on your story do from time to time. Even though the comments may seem like they are not as frequent – still know that you are in our hearts and our minds – and your words about “keeping a strong mind, and an unbroken spirit, and finding God’s blessings in your life” still inspire us! Thank you again!

  32. Congratulations on being named “All-American” by the National Collegiate Wrestling Association – a testament to your courage and your toughness, your attitude and tenacity! More prayers coming your way!!!

  33. Ben Guido "Ali Ben"

    Hi Allison, your “All-American” award and celebration was a wonderful event. It sure was nice connecting with all my MU Warrior Wrestling family and friends. Thank you for opening your home and your life to us. You are a true Warrior….keep fighting girl!

  34. I was Allie’s orchestra director in high school and now am honored to be counted among her friends as she is a young adult. She was a strong member of our violin section, went on all our tours and helped us win top honors in the State Solo-Ensemble Festival. Now she continues to help and to give, via this site and in her very being every day. Allie ROCKS=))))

  35. You are absolutely amazing and beautiful! I’ve never met or seen anyone with MD as tiny as me until I saw this.

  36. Allie-son…you are an amazing woman! I only met you once when your dad brought you into our Assistive Technology Resource Center on Capitol Drive a few years back. I think of you often and send good thoughts and prayers your way! Stay strong…fight on!

  37. Brigitte Estelle Gaudreault

    Bravo Allison !
    Comme tu es formidable !
    Avec amour ,
    Brigitte Estelle xxx
    Canada, Québec

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