Client Profile of the Month: Meet Kristi

“Permanence, perseverance and persistence in spite of all obstacles, discouragements, and impossibilities: It is this, that in all things distinguishes the strong soul from the weak.” Thomas Carlyle

I met Kristi in October of 2014. She had been working with my mentee, Shannon Khoury, at the MAC, a big box gym up the street from my place for about two months before coming to me. Shannon was making some big changes in her life and had decided to leave the MAC. She referred Kristi to Fivex3 because she knew that the work we did here would go hand in hand with the strength foundation Kristi had developed during her time with her. When Shannon told me about Kristi and her EDS, I did not even bat an eye. Why would I? I know the kind of work we do here. I know the kind of trainer Shannon was. I knew that Kristi would be in good hands at Fivex3. Why? Because we help people learn how to move better. We help people get stronger.  Most importantly, we help give people confidence to understand their bodies better and help them use the bodies they have to their fullest potential. Kristi has learned more about her body in the past year than she has in her whole life. Here is her story.

For the first 36 years of my life, I was discouraged by my doctors from undertaking exercise of any kind due to a rare tissue disorder. That changed after a visit to Mayo Clinic and exercise (well supervised) has made a profound difference in how I live and how I think about myself. Today, I have Emily and Fivex3 Training to thank for more optimism and physical well-being than I’ve every enjoyed before.

Let me back up a bit. My relationship with my body is truly complex. When I was very young, my father suddenly passed away at age 31. His autopsy revealed a rare connective tissue disorder called Ehlers Danlos Syndrome (EDS), the Vascular Type. I’ve included a definition of EDS below. At age 5, I was diagnosed with the same disorder. Because it was rarely diagnosed (especially back then), there was very little information available. The doctors, however, were adamant that I could not play sports, take gym class, ride a bike, roller skate, or do anything most kids do. I was told to never lift more than 5 pounds (a gallon of milk). I NEVER took a gym class.

Bad idea! I never learned much about my body and how it works. It weakened me physically, limited my coordination, and left me anything BUT safe. My list of injuries is long and severe. Stitches and staples for dozens of gaping wounds throughout childhood and adulthood. I fractured my nose three times. My joints often dislocate, especially my shoulders, and I have chronic neck and back pain. As a child, my fingers would dislocate on a regular basis leaving them dangling. I was able to teach a girlfriend how to pop them back in so we could keep playing. A tendon in my ankle regularly flips over a bone, and I have to pull it back in place. A toddler once gave me a head butt and now my jaw now clicks every time I chew.

Those were the simple challenges.  As I aged things got progressively worse.  At 19 deep varicosities started in my legs.  At 20, my quad spontaneously ruptured while I was sitting on a couch (that kind of thing happens with VEDS) resulting in severe loss of leg mobility. A cat bit me, and the scar tissue (resulting from 5 surgeries) caused the functional loss of my dominant hand for several years. I have had several deep blood clots (DVTs) and a pulmonary embolism (PE). In my early 30s I was diagnosed with Adenomyosis, which causes extreme monthly pelvic pain (equivalent to labor pains in child birth).

With this history, it’s no wonder why doctors, as well as physical trainers, often run the other way when they see me coming!

One set of doctors, though, took on the challenge. I visited the Mayo Clinic in 2010, and the doctors started addressing some of my chronic issues. They performed surgery on my leg and recaptured some of its mobility. Another surgery helped create more mobility in my hand. AND THEY TOLD ME TO START EXERCISING. They suggested water aerobics.

Living in Chicago, I joined a great health club with a pool and happily jumped into the pool and took excellent classes (populated mostly by people suffering from arthritis). I worked out for a year and gained a little bit of muscle. I also gained some insight into my body and realized that I could build muscle and that new muscle actually holds me together a bit more.

Then I hit another roadblock. At 39, my colon perforated, which is what took my father’s life. My surgery was successful, as was the ostomy reversal eight weeks later. In the midst of all this, I moved to Baltimore. As I recovered, new doctors at Johns Hopkins re-confirmed that I needed to begin exercising again as soon as I could. In fact, they told me it was imperative. Instead of just water aerobics, they said I should also do “conservative strength training.”

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Medicine ball throws at Fivex3 Training.

It’s not easy to find trainers that will take on a subject like me. After signing up at the MAC in Harbor East, I received three complimentary sessions with a personal trainer. I had no clue how to approach “conservative strength training” so I scheduled my first free session in hope of just figuring out where the 3 lb weights were kept. I met Shannon Khoury, and we discussed my condition, concerns and goals (which were not lofty). She was so enthusiastic about working with me. We started with the very basic movement skills. We worked together for several weeks and Shannon gave me the skills to begin to create a foundation in strength. I did not get a chance to work with Shannon very long, but prior to Shannon’s departure from the MAC, she referred me to her friend and mentor, Emily Socolinsky at Fivex3 Training. I started with Emily’s personal group strength/movement class, Basic Training. The first few were tough. I lacked confidence and became easily frustrated, even teary eyed. Part of it was sheer contempt of my fragile body. The other was a lack of understanding that my body is so different than individuals without a connective tissue disorder. Emily would adapt every exercise to my ability and soon, I was challenging myself. Even lifting 15 lb weights and trying a kettlebell swing. She worked on my form continuously to make sure I wouldn’t injure myself, and when my mind wanted to keep trying, she recognized my body was tired and would encourage me to rest. Little things started changing right away. For the very first time in my life, I was able to open a bottle of water on my own, something I have never been able to do. I started helping my husband carry in the groceries from the car. I even carried a bag of kitty litter. No problem. Each achievement inspired me to try harder and try something new at the gym. My confidence boost was energizing. Even my fatigue was easing.

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Rows.

 

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Sled drags.

I briefly left the gym this past December to undergo another surgery to address my Adenomyosis (a partial hysterectomy). Now that I don’t experience a false child birth every month, after two months of recovery, I am back to the gym. (My childhood friends would be amazed to find out I’m now a “gym rat!.”)

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Pushing the 175lb yoke.

Finding Emily and Fivex3 Training has impacted my life in a way I did not know was possible. After a year and half of working out under my belt, I am finally headed down the right path and getting fit in the process. But there is much more to it than that. There is a whole part of my identity that has been neglected and misunderstood. Body image. I have a love hate relationship with my physical self that I swept under the rug for years. Decades. My entire life. I was blissfully ignorant of the impact my body image has on my self-esteem and happiness, but my awareness is sharpening and my quality of life increasing.

Life with VEDs is painful, frustrating and even depressing. But I would not be me without it. It has made me strong. And I mean, STRONG. I have a wonderful sense of humor and empathy for the human condition that drives me to fight everyday. It also creates this love/hate dynamic with my body. I love my body because it’s the only one I have, even if it often lets me down. And after finding that exercise is the right thing for me to do, I’m doing everything I can to treat my body right. I’m determined to help it mend and get stronger every day. With that, I’m very thankful for people like the doctors at Mayo Clinic and Johns Hopkins who pointed me in the right direction, and compassionate, knowledgeable people like CK Perez in Chicago and Shannon Khoury and Emily Socolinsky of Fivex3 Training in Baltimore, who have guided me and encouraged me at every step.

Emily, get those kettlebells ready. I’m back!

 

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Kettlebell swings!

 

Individuals with Ehlers-Danlos syndromes (EDS) have a genetic defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in patients with EDS are the result of faulty or reduced amounts of collagen. Collagen is a protein, which acts as a “glue” in the body, adding strength and elasticity to connective tissue. The Vascular Type of EDS is characterized by possible arterial or organ rupture as a result of spontaneous rupture of vessels or organs due to the result of even minor trauma.  The Vascular Type of EDS is the most serious form of Ehlers-Danlos Syndrome.

People with the disorder have thin, fragile skin that bruises easily. Veins are visible beneath the skin, particularly on the chest and abdomen, and hands and feet may have an aged appearance. Unlike people with other forms of Ehlers-Danlos Syndrome, people with the Vascular Type have skin that is soft but not overly stretchy. Facial features are often distinctive, including protruding eyes, a thin nose and lips, sunken cheeks, and a small chin.

Other signs of the disorder include an unusually large range of movement (hyper mobility) of hand and foot joints, tearing of tendons and muscles, painfully swollen veins in the legs, lung collapse, and slow wound healing following injury or surgery. Infants with the condition may be born with hip dislocations and a foot disorder called clubfoot, which causes the foot to turn inward and downward.

Unpredictable ruptures of arteries and organs are the most serious complications of the Vascular Type of Ehlers-Danlos Syndrome. A torn artery can cause internal bleeding, stroke, or shock, and is the most common cause of death in patients with this disorder. Rupture of the intestine is seen in 25 to 30 percent of affected individuals and tearing of the uterus (womb) during pregnancy affects 2 to 3 percent of women. Although serious problems are rare in childhood, more than 80 percent of patients experience severe complications by the age of 40. There is no cure and no treatment at this time.

For more information about EDS, please visit http://www.ednf.org/what-eds

Kristi is also a very accomplished painter. Below is just one of her pieces. To learn more about her work, please visit her website: http://www.kristiposival.com/Kristi_Posival/home.html

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7 thoughts on “Client Profile of the Month: Meet Kristi”

  1. (the link to Kristi’s web site is quirky.)
    This is an amazing story! It is surprising how often the directive to “stop exercising” is given by the medical profession. This story is reassuring. Exercise actually cures more than the physical. It emboldens our lives and assists people in truly engaging the world without fear. Small steps lead to bigger. And bigger lead to a new kind of sanity. Working with a skilled teacher, really is a game changer.

  2. Kristi, you are a rockstar! What an amazing and inspirational story. We miss you in Chicago, but continue to wish you well.

  3. Kristi,
    What an amazing story. Thanks for sharing it. You are an inspiration to all. Be well.

    Love to you from,
    Sandy Hope

  4. Kristi is a badass! Those pictures make me so happy. I have benign joint hypermobility syndrome, so I have a much more comparably milder issue with joint instability, but I still feel connected to this story a lot. It took a year of physical therapy in order to get back in the gym and another year to start really pushing and pulling. My personal trainer is a hero. I am studying to be a health coach and will definitely use this story for inspiration in my life as well as others. Thanks so much for sharing!

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