Tag Archives: hope

Spotlight: Valarie Hutchison, Support Group Leader, Green Bay/NE Wisconsin

Recently we interviewed Valarie Hutchison, one of our support group leaders! She talks about the benefits of joining a group, advice for patients and finding inspiration. She invites you to get involved if you are in the Green Bay/NE Wisconsin area. If you are interested in joining this support group or learning more, contact Valarie at hutchresource@gmail.com.

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

VH: The former leader, who was terrific, had some big changes in her life which included a move so it looked like the group would disband.  Even though I had only been diagnosed with scleroderma for about a year, I couldn’t let that happen.  When this disease was first mentioned to me as a possibility, I began to do my own research and I was terrified.  Like a lot of people, I didn’t find knowledgeable doctors locally. I did find this local support group and reluctantly went to my first meeting. I walked in to find two women who educated me, guided me and gave me their opinion that I had scleroderma (which was later confirmed at the Mayo Clinic).  At last, the chaos in my mind was quieted, and I could move forward to get a diagnosis and start treatment.

SF: When and where does your group meet?

VH: Our group meets in a lovely room with a beautiful view at the Bellin Family Health and Wellness Center at 3263 Eaton Rd. in Bellevue WI, 54311.  We meet the second Wednesday of every month from 1:00PM to 3:00PM.

SF: What do you look forward to the most in being involved with this group?

VH: The most gratifying thing for me is the newcomer to the group who is looking for the understanding that only someone who has scleroderma can give. The emphasis of our group is supporting each other and giving each other what we need. It is very free form.

SF: Aside from the support group, what resources would you recommend for patients and caregivers in your area?

VH: I always recommend the Scleroderma Foundation and Inspire.com for the discussion boards.  Both are good resources. If you don’t have your own computer, you can use one at the library, and they have people who can help you navigate the internet if you’re not a tech geek.

SF: How do you find inspiration?

VH: There are days that the fatigue and pain get the best of me.  I have Common Variable Immune Deficiency (CVID), a primary immune deficiency and, for the last two years, Scleroderma. Brought with the scleroderma was the standard Raynaud’s with the deluxe package: autoimmune thyroiditis, Sjogren’s, and, just recently, Addison’s disease.  I’m fortunate because I live alone (with my dog, Stewie) so there is grass to cut and snow to blow and everything that taking care of a home entails.  If I had someone else to do those things for me, I would not be as well as I am. I would certainly not be as mobile because I have tendon friction rubs in most of my joints.  I can be a whiner at times, but since there’s no one here to listen I have to pull up my socks and do what needs to be done.

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

VH: I’m a mother. I have two sons that are the reason I’m in Green Bay, WI.  They’re great people- the kind of people I’d want to know even if we weren’t related- and then two grandsons.  I never feel so un-selfconscious as when I’m with those kids.  They cheer me up, make me feel better no matter what.

I worked in the mortgage industry for 20 years before it became so greedy.  I felt good about helping people by putting them in the loan product back then it was quite gratifying and I miss that.

I learned to surf when I was 55 and sailed the Atlantic as first mate on a 43 ft. catamaran when I was 57.

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

VH: Educate yourself first and foremost.  Understand your disease and your test results.  Always, always get copies of test results, radiologist reports and discs of any MRIs or scans and keep them together for the continuation of your care.  Make sure that you understand them. Go to websites like John Hopkins or the Scleroderma Foundation to learn more.  Seek out a support group in your area so that you can talk to people who really understand.  If your doctor isn’t supportive and knowledgeable go to another.

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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.

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

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