After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

New Patient Forms — Save ME!

I have to say, I am one of those people, that when tasked with doing something dreaded, I tend to try it and get it over with as soon as possible. (I think this simply because I know that hellish moments do come to an end, eventually, even if it is not in the expected way, but that's another blog post altogether.) There is an exception: new patient forms. I dread them like getting a new wheelchair cushion - for as long as humanly possible.

Why, you may ask? I will happily tell you, rather than actually complete the form on the other side of my screen. Well, it is because they are: A) endless B) trick questions C) a waste of time that doctors either barely look at or look at too closely D) completely uninformative of relevant information. Those are just the reasons off the top of my head.

You see, when you have a very complicated illness(es), and you don't know what symptoms / physical quirks are relevant or what they are caused by, it is, shall we say, a juggernaut. And on top of it all, I have also been told contradictory information by too many physicians, so it makes me feel as confident in clicking my checkboxes as I do in Camelot guarding my lunch (for me to eat later…. As in, I know all I will find is very a shiny plate). I mean, what is the difference between a chill and a tremor? From my thinking, it is shaking - but chills are from a burst of cold. Yet, what if you feel cold during the tremor, and you don't remember how they started? Do you just check both? Is it appropriate to check both if your chill can be linked to a fever, even if you don't know why you had the fever?

And don't get me started on the hearing section, vision section or respiratory section; I endlessly argue both sides of the definition of what I am supposed to be selecting. It is, primarily, because I see no point in marking symptoms that are caused by an unknown reason. None. I feel like they should be left off the table. Except that, on occasion, I come across a doctor who is truly curious about it all and would rather know everything than just a few things. So, on the off chance that this new doctor is one of ‘those’, you have to put an approximation, at least, of what you “think” you are experiencing.

Now, the irony is that I used to not include a written bullet-point, most-abbreviated version of my medical history in with the documents. So, a new doctor would come in and say, "This seriously can't be all that's troubling you. What is really your problem?" (If I knew that, I wouldn't need them, now would I?) Yet, the bullet-point summation has to be customized to each specialty, so, shortly I will end this tedious procrastination and begin to rewrite my summary based on the symptoms relevant for an umpteenth doctor to read. I wonder if I answer the forms in white ink if that would help my cause? ;)

Remembrance  - Accepting the Unacceptable

Remembrance - Accepting the Unacceptable

Music—My Life Force

Music—My Life Force