Sunday, October 6, 2013

What it's like to have a systemic mast cell disorder

This paper, right here:

"...Typically, mastocytosis patients [and related mast cell disorders] experience increasing limitations and greater suffering over their lifetime. If they push against their symptoms, believing that "trying harder" or pushing to complete tasks (laundry, grocery shopping, visiting a friend, cleaning), the symptoms become more severe and prolonged and continue to ricochet setting off other symptoms for days, weeks or months on end. There is no predictability to mastocytosis symptoms. There is no way to make the symptoms behave consistently or to be able to garner better control over them. The medical research community has not yet fully figured out mastocytosis. In the meantime, patients are driving the medical research via their physicians reporting the escalating symptoms and secondary and tertiary complications suffered by their patients. Everyone wants to have the answers, patients most of all.

"Mastocytosis patients often look normal or healthy to others, especially when they are enjoying one of their better days/moments when their symptoms are subdued or well controlled, as during these times they may be able to be more active. However, these stable periods do not endure and it is the fluctuating nature of the illness that causes much difficulty for the person with mastocytosis. Many mastocytosis patients are not seen regularly by people outside their immediate family or caregiver except for those rare occasions when they are feeling well. As a result, people fail to understand what mastocytosis is and the extent to which it prevents individuals from living a normal and active life..." 

I just found a link to this on facebook and I'm reading it and kind of crying, because this is it EXACTLY.  Just...I've got a long way to go learning about this, but I'm learning. It's just nice to not be alone.

And I'm trying to look on the bright side. I can LITERALLY be allergic to mornings now, or at least have an allergic reaction to them. I'm getting that t-shirt as soon as I can, LOL.

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