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How I Turned My Life Around by Not Letting Scleroderma Define Me

JPP (22 of 61).jpgKelly Kohls has battled scleroderma for the past 13 years and is dedicated to learning how to more effectively deal with the hardships and struggles that accompany the disease. Over the past few years, Kelly has become a mother, a runner, and a fitness coach- constantly pushing herself and achieving new milestones she never thought possible. As a patient who felt she was defined by her disease, learn how her change in mindset and lifestyle has impacted her self confidence, health, and relationships.


Scleroderma, oh scleroderma (GRRR), let’s just say we have an interesting relationship. I can finally say  now, that it is what I WAS. I mean, don’t get me wrong, I still carry this disease with me every day but let’s just say I’ve come a LONG way from where I began 13 years ago.

FACING CHALLENGES EARLY ON

When I was diagnosed, I had just married my high school sweetheart and was looking forward to our new life together. All of a sudden our world completely changed; it was seriously like someone had swung up a stop sign and smacked me right in the face with it. For the next SEVEN years of my life I was miserable. I was ill and I lost who I was.

Like any autoimmune disease I was exhausted. Not only was the scleroderma kicking my butt, the medication had me completely turned upside down. By the time I was 25 I’d lost most of my independence. My hands significantly crippled. My entire body was so tight it was hard to just move around doing daily tasks. I remember one Saturday specifically my husband, Mike, left for the races. I was heading out later in the day and it didn’t dawn on me that he had never helped me put my socks and shoes on before he left. So I tried putting my socks on. I sat on the edge of the bed and struggled for what felt like hours, my whole body hurt trying to reach my feet. I cried and sat, then tried again and struggled and sat, then I just sat and sobbed. I couldn’t take care of myself. It was heartbreaking, almost like a part of who I was died. I had to accept this new sick person; I had to accept being dependent on others and to accept the changes it was making to my body; internally & externally.

Every three weeks for several years I spent many long days getting IV infusions and blood transfusions because my body couldn’t keep healthy counts that are vital to live. Now, when I think back it just seems so crazy to me how we take our bodies for granted. We just expect them to do ALL the things they are supposed to do at all the right times. Crazy, isn’t it?

THIRTY rolled around…wow, were did that come from? It was the point in my life that I was told I couldn’t have children because I was too ill. This was TOTAL heartbreak on an entire new level! It completely devastated me. Mike was so supportive through everything – my rock and my one true love. Not only did he take care of me but let’s face it, his future was forever changed too. Although he assured me many times that it was okay, a big part of me always felt guilty for taking that away from him.

Little did I know that 30 was going to be a BIG year for me! It was the year I asked myself just WHAT in the heck is going on here? In the last seven years I had battled this horrible disease, my mom suddenly passed away and I was told my future dreams are no longer possible. To say my life was a hot mess was a total understatement.

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TURNING THE CORNER

You guys, I just wasn’t having it. I HAD to turn my life around. I HAD to live it. I’m ONLY 30!! I want to enjoy life and have all the things I ever wanted.

So, I set some pretty huge goals for myself. I realized that I could never cure myself from scleroderma but I knew deep down that there were things I could do to get as healthy as I could control. So, okay guys, are you ready for it? I bought a treadmill! Yes, me! The one who couldn’t even put her own socks on. My goal was to be a runner someday, so every night I walked on this treadmill. Before I knew it I was jogging-3 miles! By the time I was 32 I was a runner- tada! I was running 4+ miles at a 9-10 minute mile…say what?? I was eating healthy & cut out processed foods. Don’t ask me how or why but I went into a “sort of remission.”

Guess what? You’ll never guess! Shortly after I turned 35 I had a precious baby girl. Gahhh!! I’m tearing up right now! Emily is the name of my little miracle. My pregnancy was closely watched but was healthy, normal and very exciting! She was born healthy and continues to be a healthy sweet little two year old. Although I still have scleroderma and deal with struggles each day, I am counting my blessings by continuing to be healthy. Pushing myself each day to be in a POSITIVE state of mind has allowed me to make amazing strides.

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MY LIFE TODAY

Last year I became a fitness coach and I’m in the best health I’ve EVER been! I continue to eat clean and workout every day; I’d also totally be lying if I didn’t say, heck yes I struggle to workout some days. Heck yes I have to modify moves and take it slower – but becoming active and overall healthy about the things I can control has literally changed my ENTIRE life! Now I’m very passionate about coaching and helping other people change their lives to get healthy too – how amazing is that?! If you want it bad enough, you CAN do it! You really can!

I have everything I ever wanted. Well… I do carry scleroderma with me and I could definitely do without that. The one difference about it now though is I don’t let it define me. Yes, it’s what I have but it’s not WHO I am anymore.

It may sound cliché but life is truly amazing; it really is. Sometimes it’s sucky but it has made me a fighter, a strong person, a better person, an amazing mama and wife and I’ve learned to appreciate every moment.  We are all blessed in our own way; you need to fight to find yourself. Only then will you always see the beauty in everything – good and bad.

-Kelly Kohls

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Knock Out Scleroderma!

Many brave souls made their way to UFC Gym on May 21, 2016 for an action-packed morning of boxing at the 2nd annual Knock Out Scleroderma! The McCaffrey family started this fitness event last year in honor of loving mother and wife, Jan, who battled scleroderma for many years.

UFC Gym hosted an hour boxing lesson for participants before they made their way to The Scout Waterhouse + Kitchen for appetizers, beer, and prizes. This fundraiser was tons of fun and raised approximately $3,000 for the Scleroderma Foundation! Way to go!

We are always impressed with the ideas that our supporters come up with for fundraising and the determination they have to make a difference. A huge thank you to the McCaffrey family for their ongoing support. These types of community fundraisers truly are the lifeblood of our organization and provide hope to scleroderma patients everywhere.

If you’d like to start your own fundraising event, you can use the “Hoperaiser” fundraising tools on our website, or reach out to us at 312-660-1131 for more information.

 

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Great job everyone! See you again next year!

How Exercise Can Change Your Life: One Patient’s Inspiring Journey and Practical Tips for Everyone

Christina Montalvo is a Corrective Exercise Specialist and Nutrition Coach. She met Marie, a scleroderma patient, almost four years ago at a local gym and started focusing on improving Marie’s strength, mobility, and ability to perform daily activities. Using different exercises, common equipment and modifications, they have been able to reach these goals. Christina noted that even 10 minutes a day focusing on intentional movements can help anyone gain strength and confidence. She is a firm believer that exercise is for everyone and the benefits are limitless.

Christina and Marie will share their experience and exercise tips during a presentation at the Scleroderma Patient Education Conference on April 16, 2016, presented by the Scleroderma Foundation, Greater Chicago Chapter. Christina and Marie will be discussing the proper mindset of exercise, sample different exercises and modifications, and show some common exercise equipment that anyone can buy.

Christina expands on this by saying, “There are not any specific or unique exercises that I do with Marie because of her scleroderma, but rather, I use a variety of techniques to provide her with a safe environment and proper modifications that she needs due to her limited range of motion. By strategically implementing these modifications (example below), she is able to strengthen muscle groups that otherwise could not have been properly strengthened. Overtime, as strength is gained, the modifications change as her body allows. However, some modifications will always be necessary, and that is perfectly okay!”

QUICK TIP:

Christina explained that Marie has limited range of motion in her hands, so when they need to do something that would normally require her hands to be flat on a surface, like one would do in a push-up, for example, using handles allow her to assume a similar position without her hands being a limiting factor. This is not a strength issue, but rather a mobility issue. Here is one of the tools they use to overcome this. By using these handles whenever one would need a flat hand, Marie is able to do things in her workouts she once thought she could not.

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Christina goes on to say, “Marie and her body will tell me what she can and cannot do, and the goal is never to push her farther than she is physically able. With some innovation and imagination, we are able to incorporate things she once thought she could not do by finding viable solutions instead of focusing on the problem. There are things Marie is able to do physically now that she never thought could be possible- with enough time, patience, proper modifications, a safe workout environment,and the right attitude, the possibilities are endless.”

You can see Christina and Marie’s full presentation on April 16, 2016 at the Scleroderma Patient Education Conference in Oakbrook, IL. For more information and to register go to http://www.brownpapertickets.com/event/2495947. The event is free to attend.

 

Every person is unique. Always remember to consult your physician before beginning any exercise program.

Spotlight: Britney Helm, Support Group Leader, Milwaukee

Recently we interviewed Britney Helm, one of our new support group leaders! She’s excited to be starting a group in Milwaukee, Wisconsin and invites you to get involved. If you are interested in joining this support group or learning more, contact Britney at brit12@gmail.com.

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SF: Why did you decide to start a support group?

BH: When I was diagnosed with Scleroderma, I researched online and found a lot of information. I had no one to help me deal with the emotional and physical part of the disease.  After being a member of another Scleroderma group, I realized that there is a need in the local area to help one another.

SF: When and where will your group meet?

BH: We meet every 3rd Saturday of the Month from 10am-12pm.
Location:  Froedert Hospital – 8700 W Watertown Plank Rd, Wauwatosa, WI 53226

–Community Conference Room 2 located in the Wisconsin Athletic Club building.  Enter building on the 87th Street side look for Community Conference Room entrance.

SF: What are you looking forward to the most in being involved with this group?

BH: The most important part of this group to me is to help others.  This disease is scary and is unknown throughout the community. Nothing is better than to have your fellow Scleroderma members coming together supporting each other.

SF: How do you intend to help or inspire others?

BH: I hope to encourage others that this disease can define a part of who you are, but it can’t take your joy.

SF: Can you tell us a few interesting facts about yourself?

BH:
I love to laugh.

I have hunted alligators in the Panamanian jungle

I love snow, but hate being cold.  I have a lot of gadgets, and a kit that helps keep me warm.

I drive a motorcycle as much as I can, like cars, and getting dirty with tools.

I love to travel.

SF: Do you have any words of advice for other patients and caregivers?

BH:

For patients: Be your own advocate.  Never just take a doctor’s word.  Do your own research and journal your symptoms.

For caregivers: This is tricky because I have seen very supportive people run for the hills.  Caregivers, you will never understand what is going on with Scleroderma patients because the Scleroderma patient doesn’t even know half of the time.  Be patient and understanding.  We are always cold; we are tired but we still want to have fun.  To have fun we have to charge our battery to have a little bit of excitement.  Be patient with us, we are delicate.

 

Britney Helm Group

Britney Helm with her 2015 Germantown, WI  Walk Team

 

Thriving with Scleroderma

Lisa Helfand shared her personal journey at the Spring 2015 Scleroderma Patient Education Conference, with a presentation titled “Thriving with Scleroderma.” In case you missed it, the inspirational video is posted below.

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Highlights include:

  • Her long process of a diagnosis. Lisa’s been a scleroderma patient for 30 years. Initially, her scleroderma went untreated for two years and was characterized as warts.
  • Instead of living her life she was told she needed to devote her life to the disease.
  • Dealing with daily pain and the active decision to not dwell on it.
  • You don’t need to be positive all the time. Allow yourself a day to be sad, but take the next day head on.
  • Compassion and advice for anyone living with a chronic illness, particularly scleroderma.

Lisa is not only thriving with scleroderma herself, but wants to inspire others to do the same. In addition to public speaking, she writes a blog, wrote a book and started a campaign called “Face Off for Scleroderma” after she posted a photo to Facebook and it was denied. She encourages others to participate by posting photos sans makeup.

To connect with Lisa and read more of her inspirational posts visit her blog.

Additional tips on thriving with scleroderma:

  • Meditation: Allow yourself to develop a routine to organize your thoughts. Whether it’s yoga, writing a story, or doing breathing exercises, it’s important to do something for yourself.
  • Highs and lows (roses and thorns): This is always a fun interactive game to play around the dinner table or whenever you’re together. Even if you aren’t having the best day, this activity allows you to focus on the great things that happen every day. Believe me, you can always find at least one.
  • Don’t accept depression: There is a strong correlation between attitude and quality of living. If you’re struggling with depression please talk to your doctor, a psychiatrist, or another trusted individual. It’s important to keep your routine as normal as possible after a diagnosis because you and your family feed off each other and need to reciprocate support.
  • Be patient: Find the right doctor for you. It’s important to find a team of doctors that communicate and make you feel comfortable. A diagnosis like scleroderma will not be an easy road and so it’s valuable to have a team that understands not only your disease, but you as well. The Scleroderma Foundation can help provide physician referrals.
  • Support System: Recognize the people in your life that mean the most to you. Everyone has moments of weakness and it’s important to have a strong support system behind you to lift you up when needed.

As Lisa says, “You have three options: give up, give in, or give it all you’ve got!”

 

Source: http://www.niams.nih.gov/Health_Info/Scleroderma/scleroderma_ff.asp

Spotlight: Franny Kaplan, Support Group Leader, Highland Park

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Recently we interviewed Franny Kaplan, our newest support group leader! She’s excited to be starting a group on the North Shore of Chicago, in Highland Park, IL and invites you to get involved. If you are interested in joining this support group or learning more, contact Franny at NSscleroderma@gmail.com. The first meeting will be held Saturday, May 2, 2015.

SF: Why did you decide to start a support group?

FK: There are no support groups serving Northern Cook or Lake County at this time. I know several people who suffer with this disease who have no one to discuss issues with or have the resources to learn about coping alternatives.

SF: When and where will your group meet?

FK: The support group will meet the 1st Saturday of every other month beginning May 2, 2015 at the Chase Bank (lower level) in Highland Park on the corner of Central Avenue and Saint John’s Avenue. Meetings will be from 10am to 12pm.

SF: What are you looking forward to the most in being involved with this group?

FK: I’m looking forward to sharing my experiences by fostering a group who feels comfortable with sharing their fears, feelings and accomplishments in dealing with their illness. Learning from these same individuals to help me deal with my feelings and fears…to help me accomplish more.

SF: How do you intend to help or inspire others?

FK: One day at a time, don’t procrastinate in taking care of yourself, seek solutions, take charge, ask for help and be your own advocate.

SF: Can you tell us a few interesting facts about yourself?

FK: My husband and I love to travel and spend time with our children and grandchildren. I enjoy being with friends, reading, yoga, working out, playing canasta and mahjong. I love to cook and entertain and enjoy giving back to my community. I retired about a year and a half ago working for 30 years in the medical field. Although not clinically trained I have worked in many areas of internal medicine. Prior to that I taught elementary school.

SF: Do you have any words of advice for other patients and caregivers?

FK: I hope the group will help members by being open minded, non-judgmental and positive while listening to them during their difficult times. I hope we can become a community of common interests, not only of a common disease.

VIDEO: A Look Back at 2014

Thanks to YOU, 2014 was a great year and we are excited to enter 2015 with even more commitment and determination than ever! During this season of giving and reflection, it only makes sense that we give thanks to our supporters for everything you’ve done this year. You are the lifeblood of our organization and the source of hope for so many scleroderma patients. Check out this short video for just a few of the highlights. I hope you will continue the fight with us in 2015, as we work to put an end to scleroderma.

Best wishes,
Stephanie Somers
Executive Director
Scleroderma Foundation, Greater Chicago Chapter

VIDEO: Thanks to YOU! A Look Back at 2014

Lisa’s Inspirational Journey

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Stubborn, strong, resilient, annoyingly positive and ridiculously outspoken; all adjectives people have used to describe me. Are these compliments? It depends who you ask. I do know these characteristics have helped me through my darkest and brightest days living with scleroderma.

In 1985, after two years of misdiagnosing my symptoms, I was diagnosed with scleroderma at the ripe old age of ten. This was long before you could Google anything you wanted to learn about on the Internet. Growing up, all I knew about scleroderma was what my mom had told me, which was that my skin was tighter than most people’s. She did not tell me that I would develop telangiectasias all over my body, that my limbs would become mangled and deformed, or that my fingers and elbows would leak calcium. I discovered these cool party tricks for myself.

In 1993, while home on spring vacation my freshman year of college, I had the same battery of tests run that had always been done every six months since my scleroderma diagnosis. It was determined that my lung capacity had been significantly reduced and there was some sclerosis found on my lungs. The doctor suggested that I drop out of college immediately so that I could undergo intensive treatment to try to stop further progression of the disease.

Had I just been steamrolled by a truck? What was this doctor talking about? I wasn’t sick! I just had tighter skin than everybody else, right? Within the hour, I was sitting alone in my internist’s office as she explained, “There is a possibility that your scleroderma is getting worse and beginning to affect your internal organs. This could lead to sclerosis of the esophagus, lungs, heart and liver. Lisa, this would significantly impact your ability to eat and breathe, and could also affect your kidney function.”

“Well, what does that really mean? Could I die from scleroderma? People don’t die from scleroderma….do they?”

“While new medications are being explored all the time, most people with systemic scleroderma do not survive more than seven years due to the toll the disease takes on all of their major organs.”

Tears trickled down my face. Through the shock, I managed to stand up and get back to my car, where I sat and processed this confusing news. I collected myself and headed straight to the public library. Trembling, I entered the word “scleroderma” into the computer and waited for the results. I found a whopping seven articles on the subject and quickly retrieved each one from the microfiche archives.

Every article depicted scleroderma as a horrifying disease where people looked completely mangled, lost their hair, needed oxygen tanks to breathe, experienced total kidney failure, and couldn’t fit a toothbrush in their mouths. Of course, some of the articles did mention that there were varying degrees of scleroderma and some experimental treatments, but this did not apply to me. I was going to get progressively worse, look like a walking skeleton, and ultimately die. I would never get married, have children, be a teacher, travel, or enjoy life in a normal capacity. I thought I might hyperventilate. The train to doomsville was departing and I was ready to hop aboard.

The next day, we went to see another doctor who calmly told my mother and me that, although my test results did show that the disease had affected me internally, he did not think I needed to drop out of school and head for the nearest hospital. Rather, he would put me on a new medication, Penicillamine, to see if that would prevent progression of my disease. We would run all the tests again in six months and see if my organs had continued to sclerose or if they remained stable.

After six months, my tests revealed that my condition had not improved, but it had not worsened either. This was an excellent sign. I would continue to be tested semi-annually and as long as I remained stable, there was no reason to be alarmed.

Six more months passed, I was still stable. A year, two years, three years… thirteen years, and I remained stable. I married my incredible husband and became a teacher. My condition went unchanged through my first pregnancy, the birth of my son, and my second pregnancy.

In 2006, I suffered catastrophic complications after the healthy birth of my daughter and remained in the hospital for 218 days after her birth. We will never know how large a role my scleroderma played in what happened. I lost my colon and spleen, underwent seven major surgeries, had two tracheotomies, experienced severe ICU psychosis, and was temporarily paralyzed due to extreme deconditioning. More than once during my hospital stay, my family was told my chances of survival were slim.

I spent more than nine months in physical, occupational, respiratory, and speech therapy. With the support of hundreds of friends, family and medical professionals, I learned to walk, talk, eat, and independently breathe again. My children are now eleven and eight. They are the sun, moon, and stars in my sky. I am thankful to report that my scleroderma is once again stable.

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Stepping Out to Cure Scleroderma – Highland Park, IL – June 2014

My journey as a scleroderma patient has spanned three decades. I am grateful to spend every day living and working as a mother, wife, sister, daughter, friend, and elementary school teacher. When I was nineteen, I grasped the gravity of this disease. It took me a while to realize that living as if you are dying is not really living, it’s just not dying.

I have been asked by many how I always keep a positive outlook in the face of this illness. It’s simple: I don’t. I’ve taken a swim in the pity pool and have played the “why me” game more times than I can count. There have been times in my life when scleroderma has brought me to my knees. Times when the pain was so unbearable, I thought I could not persevere. Here’s the thing though, we are only given one life, one body, and a finite amount of time to live on this beautiful planet. How we choose to spend our time is up to us. We are the authors of our own life story.

We can view life as a series of disconnected events strung together by time and space. We can dwell on our misfortunes and keep a running tally of all the injustices we have endured—that’s a great recipe for a life of boredom, depression, and loneliness. We all need and deserve to take a dip in the pity pool once in a while, but let’s not spend our lives in the pool training for a misery marathon. I believe there is a better option.

As scleroderma patients, can we fight for awareness, research, and a cure? Can we come together and pledge to rage against this disease and not back down until a cure is found? I know we can! We are a resilient group of thick-skinned individuals (pun intended) who will not relent. Scleroderma sucks, but living with scleroderma should not. Let’s all commit to being stubborn, strong, resilient, annoyingly positive, and ridiculously outspoken! It is up to us to determine our future and ensure it is bright.

– Written by Lisa Helfand