Tag Archives: support group

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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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.