“I can’t imagine finding proper support anywhere else than here.”
“…since that first day, the community has been open, friendly, supportive, informative, cajoling, and has empowered me to understand my disease…”
These are just some of the heartwarming reviews from our members about Ben’s Friends communities.
Aside from the very important information it provides, members always talk about how supportive their community is.
How can an online group composed of thousands of people who do not know each other actually make the members feel safe and cared for?
One of the main reasons for this is our volunteer moderators.
They are the ones who monitor the posts and ensure that everyone adheres to the community guidelines. They usually lead the conversation to a better direction such as by tagging members who might be able to provide useful information.
Most of the time, our moderators also share their own ideas related to a members’ post.
For sure this takes a lot of dedication.
In case you’re wondering how come we have amazing moderators, the answer is quite simple: They are members themselves.
Our moderators know exactly how rare and chronic illnesses affect people’s lives because they are dealing with them too.
And like other members, they too have felt the much needed support from their Ben’s Friends community.
In this blog, we’re sharing with you the story of Norm, who has been a member of the Living with PsA Community for a while and is now part of the moderators team.
I was born in 1960, raised in Manitoba, Canada. I do love to hunt, ice fish and live on the land. Our 100 acre farm affords us many walks and projects including much time gathering firewood for our cold winters.
I have been self employed for about 40 years as a sole proprietor of an in home appliance and air conditioning business. PsA forced me into a very limited role as a technician.
For the last 20 years I have been bi-vocational sharing my time as a minister of a rural church.
My wife and I married young and immediately started a family…we love children.
Our 4 children are married and have blessed us with 13 grandchildren all of which live a half hour drive away. Sunday dinner is quite the time together!
My Psoriatic Arthritis journey
As with many others, I started having aches and pains probably 10 years before a diagnosis. Very little strenuous exercise would leave me with what felt like tendinitis.
I have been very healthy and without any prior skin issues, suddenly developed inverse psoriasis.
It started with my eyelids and ear canals then went to my scalp, back of knees and any other ”warm” areas.
I was miserable. A dermatologist prescribed something called Protopic…it worked great getting rid of most of the psoriasis.
Twelve years later, I quickly went into horrible joint and muscle pain along with Plantar fasciitis. My doctor prescribed high dose prednisone to treat what she thought was PMR. It made me feel fantastic until I went off and then back into debilitating pain.
My feet were the worst, always feeling like they were being squeezed in a vice. My knees rapidly followed.
The first rheumatologist that I saw said I don’t have Plantar fasciitis, take some Tylenol and it will go away.
The second Rheumatologist diagnosed “likely” PsA and conservatively prescribed Methotrexate. After 6 months of getting worse and little help from her, I got in with a mature (70 year old) rheumy who had me on Humira immediately with sulfasalazine.
After a roller coaster of ups and downs and the PsA slowly progressing, I have been prescribed Rinvoq. It is helping me stay mostly functional but never pain free. Flares are easily triggered by physical stress but I have a poor memory and keep doing things that I shouldn’t do.
It has taken me a long time to accept the reality that I have a progressive, incurable disease that will always need some sort of management.
For me, my PsA is not very visible except when I limp from pain. I don’t have any visible external inflammation, but the high level of enthesitis is very real.
But others can’t see enthesitis, and I (we) have to live with a perception that our “issue” is in our head.
I’ve always felt that this disease is mis-named, it doesn’t really describe the disease with any accuracy. The internal, unseen pain can be quite awful, but there is hope that new medical discoveries are on the horizon. The journey continues…
My Ben’s Friends story
I was desperately drinking in every Google article I could find about PsA and was really put off by the very poor description of it.
For example, though some struggle with “sausage toes” as a symptom, many or even most don’t, yet that is the first image to come up on the internet. RA really steals the show.
While searching, I stumbled across the Living with Psoriatic Arthritis community of Ben’s Friends and the rest is history.
There is a security that I have in being considered significant to other members and having a real sense of family.
Hey, it’s true, “Misery loves company”….it sure beats being miserable alone! I find it very comforting that others truly understand me.
And my being at rest mentally because of this connection likely does affect the whole family.
What could life have been like without this community?
I am so thankful to have this life line connected with people who get “it” and share their wealth of experience and knowledge. I really don’t have to go anywhere else looking for support, wisdom or information concerning all things PsA.
Being a church pastor gives me a spiritual family while this fills a hole that only those with PsA can understand.
Living with Psoriatic Arthritis is another type of rock, a secure place for me to grab on to. I would probably be dealing with a sense of loneliness in this journey without the community.
What I want to highlight in my experience as a member
I don’t spend a lot of time noodling around the internet and have never joined a forum before.
I signed up with little expectation of anything, was really down about my body turning on me, confused about meds and terrified of the potential side effects of biologics.
It was a game changer for me as I was immediately accepted and valued. The respondents to my many questions and PsA ignorance were always kind, insightful and encouraging.
As trust grew, I began to take their advice.
So my message for other members is “Don’t run away or leave the caring community that this is even if you are down in the dumps or found remission. Your shared struggles and victories are what make things work!”
Being a moderator
The fact that I was asked to be a moderator was an indication of those making decisions having some sort of thinking that I might have something to offer. I’m still figuring that out.
I have been raised with ethics that encourage giving back in some way to those from whom you have gleaned much. I only had selfish reasons to say, “no” to the invite so I have embraced it, uncertain of my role.
I try to be encouraging and a good listener. Sometimes I accidentally make someone smile or dump their coffee by being a bit goofy…so far the others put up with me.
I think that none of the moderators have it all together and all of them contribute strengths to “fill in” each other’s deficiencies, hopefully making a good team. The sense of care and humility drew me in.
Love you all, thanks for your input, friendship and patience. Please pick somewhere warm for “Camp PsA” in 2023. And Hey, when do I get my “PsA NOT psa” tee shirt?