"...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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