Information and inspiration for scleroderma patients and caregivers. Serving people in Illinois, Wisconsin and Indiana.
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 email@example.com.
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.