Mastocytosis

Mastocytosis... I could write a book about this illness and how it affects one's life. I should write a book about this illness. Unfortunately, I really don't have the energy to write a book. It is time to expend what little energy I have left on me and for me (yes, it is my time to be a bit selfish)... for my immediate family... for those closest to me.

The purpose of this page is to provide some information about this illness in all of its forms. Right now, I am in the process of putting together a cohesive page to insert here. I'd like to also add helpful links and resources explaining this illness but cohesive information on this illness is hard to come by even in today's universal virtual world.

There really isn't a whole lot of info out there about this rare illness especially the systemic version of this debilitating illness. To make matters worse, as this illness gains more public awareness as well as more awareness in the medical community, this illness and its classifications have gotten much more complicated over the years since I was originally diagnosed. In my opinion, the classifications have become far too complicated which I suspect would cause many doctors to just shake their heads in frustration. It certainly makes it far too trying and complicated for newly diagnosed patients as well as their families.

I should try to help explain these classifications but I don't think I have the energy to decipher this mess. To be honest, in my opinion, these new classifications would mean absolutely nothing to me anyway. Either you have the illness or you don't. The only other thing I would need to know is whether I am considered a "terminal" patient just yet.

A medical classification is irrelevant to the patient, to the families, to me. I fear that these new, complicated classifications have made things much more complicated for the insurance companies too! It has probably created a bigger nightmare for patients trying to get ahold of their disability insurance in order to survive. Of course, the one taking the brunt of this exceptional frustration and complication is the patient. So, don't expect to find any information about the classifications of this illness in my blog. I really have no desire to venture down that road nor do I feel it matters. Either you have Mastocytosis... an incurable and very debilitating illness... or you don't... period.

I've compiled a list of links, below, to try to keep this as simple as possible for now. Finding appropriate links can be difficult, however, because this rare, developing illness can be a varied and complicated affecting different patients differently while also being hindered by all sorts of secondary illnesses and problems. As a result, I've included many links from my own blog which explain the illness, the struggles, the symptoms, and even some of the good times in between the struggles.

Clearly, this info could benefit patients but I also feel very strongly that it could benefit caregivers, family and friends of those struggling with this debilitating illness. One thing I have always said is "when one person in the house is chronically ill, everyone in the house is chronically ill." Everyone in the house... everyone in the family circle... is affected by the chronic illness of one patient in one way or another so understanding is very important. Because of this, I hope healthy people will also read these pages to try to better understand the life of a chronically ill patient in their life. With true and deep understanding comes a bit a dignity and "normalization".

Putting together cohesive information like this takes time and energy... I do have the time but energy is quite limited so bear with me while I compile information for this page.

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Scattered Thoughts . . .

Mastocytosis

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