Canton woman is a pain warrior

Joanne Maliszewski, 5:31 p.m. EDT September 9, 2016

Suzanne Stewart of Canton lives in pain – all of the time. And she knows plenty of others who share a similar lifestyle.

“It’s up there with cancer, childbirth and amputation of a finger without anesthesia,” said Stewart who suffers from a nerve or Neuro-autoimmune disease (RSD/CRPS). She also lives with: Chiari, R.A., O.A., Degenerative Disc Disease, Dysautonomia/POTS, Polyneuropathy in Collagen a Vascular Disease (= to EDS type 4,Vascular) and other issues.

As an ambassador for the U.S. Pain Foundation, Stewart – who attended an educational retreat in August – has a host of events and displays this month in Canton to spread awareness of living in chronic pain. The U.S. Pain Foundation serves as advocates for pain management through a variety of methods, including medicines.

Stewart’s life of pain began following an auto accident in 2002, which led to eight surgeries. She has since had a pacemaker installed, has had a stroke and heart attack all by her current 54 years of age. “One in three Americans lives in chronic pain,” Stewart said.

Suzanne Stewart and her husband, Craig, showing the
Suzanne Stewart and her husband, Craig, showing the display for awareness of chronic pain. (Photo: Submitted)
As a result of the auto accident, Stewart suffered nerve damage – a cause of much of her continuing pain. At times she is in a wheelchair, other times she uses a walker or a cane. She suffers continual swelling on her left side and has lesions from one of the autoimmune diseases.

As society fights against some types of prescriptions, Stewart wants the public to know that those medicines are necessary for her and others with chronic pain, to live their lives. She also wants the public to know that while no one can see her chronic pain, it’s there and it is very real. Offering an example, Stewart said she has a handicapped permit for her car. But she has had people gawk at her and question her because she does not look ill or handicapped.

“They don’t see it, but I can feel it,” Stewart said.

That has led to her making fliers and signs that say, “People with pain matter,” because she urges others to avoid judging those who live as she has to. “Don’t judge what you cannot see,” she added.

As part of increasing awareness and understanding, the U.S. Pain Foundation has kicked off a project asking those with chronic pain to send in their stories. “It’s really more of creating an understanding,” Stewart said.

Locally and for starters, Stewart has a display in the Canton Public Library through Sept. 16. It’s a display of facts and information about chronic pain and awareness, as well as information about he U.S. Pain Foundation and additional data about RSD/CRPS, the autoimmune diseases from which she suffers.

On Tuesday, Sept. 13, she will attend the Canton Township Board of Trustees’ meeting to accept a proclamation designating September as “Pain Awareness Month.”

Other activities will include:

Wal-Mart in Canton, store No. 3476 on Ford Road: 1-3 p.m., spreading awareness of chronic pain with items from the U.S. Pain Foundation.
Monday, Sept. 12 from 10 a.m.-noon, Stewart will have a booth for “Senior Day” at the Canton Summit ..She will hand out items to increase awareness, as well as offering 400 bags of information and items for Seniors.
Stewart also plans to fundraise for the pain foundation and plans Someday, to head to Washington D.C. to meet with officials of individual states to raise awareness and to make changes for people living in pain, she said.




original article is here:



Helping University Students Be Aware While Being a Health Advocate for RSD/CRPS

I was seen in a restaurant wearing my RSD/CRPS hoodie sweatshirt and the t-shirt that I bought from RSDHOPE.ORG with the cool Orange, yellow, red flame Awareness ribbon on it for our disease.  The girl, who’s name is Jennifer and who is a student at Eastern MI University, said that she was in a group. She told me they needed to do a project on something that was relatively unknown. So she chose RSD/CRPS when I started telling her about my illness. I told her about the burning fire pain and the allodynia or being too sensitive to touch on my skin. I explained about my “full body /systemic RSD/CRPS” and how I have it inside of my body and that I have lesions and purple, mottled skin and my worse RSD/CRPS left side is bigger than my other side extremities. She was very interested and called her group. They wanted to get involved and now we had a session of questions and answers and info that I did with them last week. Soon we will be having a booth set up for non profit in November at the University. This booth will be for spreading awareness about this awful disease. The more people that learn about it, the better it is for us when we visit Dr’s and E.R.’s and such. Here are a couple of video’s that I made from the meeting last weekend. I have to thank Keith Orsini from for all of the flyers, decals and brochures that he sent for their group and the meeting, with more on the way for the booth in Nov. I also want to say “thanks” to Jim Broatch from for giving me a video to show the group that explained the Dr’s and patients side of view and actually “Keith” was in the video! So here are my couple of video’s to share with you now and one video is the original Question/Answer and information meeting October 2015:

Photo Oct 11, 10 59 22 AM (1) Photo Oct 11, 10 59 31 AM Photo Oct 11, 10 59 44 AM Photo Oct 11, 11 00 35 AM Photo Oct 15, 6 18 41 PM Photo Oct 15, 6 19 00 PM Photo Oct 11, 11 59 59 AM