Hello, and welcome. I’m Karen, and I would like to invite you to walk with me along my journey. It isn’t always the easiest hiking trail, but it is rarely boring.
When I was in school, Rick Hansen was doing his around the world journey in his wheelchair, to raise awareness for spinal cord research. When he came by, the whole school went to Lakeshore Road to see him. There were a number of others wheeling and running with him, several stopped their intended run right in front of us, which confused me a bit. When I asked Mom about it, she said that it was always easier to do difficult things if others join you. She explained that those people stopped at the top of a big steep hill. They couldn’t join him for his whole journey, but even being there for a bit of it helped him along. He was doing it for himself and them, they were letting him know that they appreciated it. Mom used the event as a metaphor for life’s journeys that has always stuck with me.
I have several interconnected medical problems, when added together, they make my life distinctly different than most. The ones that affect me most are the ‘triad’ of MCAS, EDS and AD. (Mast Cell Activation Syndrome, Ehlers-Danlos Syndrome, and Autonomic Dysfunction).
While the ‘name’ MCAS is new, the underlying condition certainly is NOT. Inappropriate mast cell activation is proving to be an important factor in many, many disorders, from arthritis and multiple sclerosis to chronic fatigue syndrome and autism. It may help explain the dramatic increases in inflammatory, immune and allergic illnesses. The increased understanding of the role of mast cells is leading to treatments that are much more effective at reducing symptoms and increasing function.
What I learned from other patients in 30 days is more useful than the last 30 years of visits to the allergist. I am surprised at how much I enjoy chatting with other people who “get” it. The intense relief to hear someone say “I have that too!”; putting all of my years of minor ailments into a single, unifying whole has made a huge difference!!! I’ve had years of being told that what I My body was doing was impossible. There is a lot of validation in learning that there are others whose bodies do the exact same ‘impossible’ things.
There are a number of personal blogs outlining the incredible lives that people with these illnesses lead. There are a few excellent sites that chronicle all the new research; which is so fast and furious right now, I cannot possibly keep up with it! There are also advocacy groups such as The Canadian Mastocytosis association, www.mastocytosis.ca and TMS (The Mastocytosis Society) in the states; www.tmsforacure.org. I have no intention of replacing any of these wonderful resources. One of my pet peeves is opening five different websites only to discover that they have clearly all borrowed their information from the same source. I’m not going to repeat a ton of stuff, it’s way more efficient to put a link to a good source. All medical conditions on the big medical web sites say “Ask your doctor”. That isn’t terrifically useful if you know more about it than your physician.
I will even go far enough to say that most doctors would probably actively not recommend a lot of what I am talking about (especially in writing). Some of what I talk about hasn’t been studied or validated. So it isn’t considered ‘evidence based’ by some. (Of course, anecdotal evidence is still evidence, but that is a topic for a philosophy blog…). My view is that what you call it is much, much less important than what you do about it.
MCAS isn’t something that goes into remission, or that is ‘cured’. There is no ‘destination’. Rather, It is managed. It is a constant cycle of trial and error, where stability is delicately balanced.
I hope that this site will be a positive place. A chance to grow, to learn from and support each other. It may seem fragmented at first, but I hope to build the site, and develop it over time. I have more ideas than time and energy; I am looking forward to seeing where we end up!
The burdens of others are lighter than our own, that’s why it’s so much easier to travel life’s journeys with a friend.
Thanks for joining me!