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.

Professional Egos...

Professional Egos...

I have been told I can have quite the ego when I feel pushed into just the right corner. The truth is, I rarely have that type of ego personally. But over my body? In a New York second. It’s not an ego born out of pride, but rather out of a wary, war beaten, hardened respect that only two adversaries can achieve. This ego evolved both out of respect and fear—as I have been unintentionally physically harmed numerous times, to the brink of death and back, as well as relatively innocuous incidents—all by egotistical, self assured doctors and/or other medical professionals, who think my master riddle of a body, is no challenge. Therefore, in these cases, the ego vocalizes my wariness.

These, overly confident, staring down their noses at you like you don’t have a clue, are the ones who raise the hair on the back of my neck to cactus level. These professionals, who dismiss your cautionary, and straight up comments as to where they need to take precautions, because after all, things will never go wrong with them, are my nemesis. If you’re thinking confidence is always necessary when dealing with a challenging case, I agree. However, confidence also means you have a respect for your opponent; egos have no room for it. In their minds, my body has simply been mishandled by lesser, ignorant plebeians.

Bite me.

Not that I say or in any way demonstrate that. There are rules when dealing with such persons, and the number one is to smile like an idiot and say I hope you’re right, while watching them like a hawk before they can actually harm you in their ignorance and fool hardiness.

This happened to me just recently as I begin a a new battery of repeat testing. The simple, least “painful” was the kilo of blood the latest consulting specialist wanted. No problem. With, a new medical term most doctors agree with, my “SFV” – that’s “Shit For Veins”—blood work needed in large volumes is only drawn through my handy-dandy, below the skin meta-port. (If you know someone that has had to have a lot of continuous IVs or several chemo sessions—they probably have or had one.) The port is inserted for however many months or years necessary, and is connected to your central vein. Bingo, no problem.

The other day, however, two of the labs by their nature required being drawn through a regular vein. Fine. My mom, wanting to make sure there would be no incident, went to the hospital lab, explained my needs in a wheelchair, fragile veins, how it would be a while in looking, that they can collapse too easily, etc, to make sure they could handle it. No problem. Told us to call before coming in to make sure it wasn’t crazy and they had extra people. Easy Peasy.

Ha! In all fairness, my mother thought the Chief of the Lab was my best shot for it going smoothly. I, however, met her ego, as she calmly explained to me that my seventeen years of being told I had SFV was simply lack of working with good people. (The only thing I can’t stand more than egos is someone insulting the myriad of professionals over my history who have fought hard to do the required tasks so we can keep my body alive, and in the best condition possible.) Like, who the hell do you think you are?

But again, the rules of the game. Smile, politely say, I have had excellent technicians and physicians, but hopefully your go today will be simple and easy. Swallow your entire face to keep from saying your thoughts. And when she’s feeling out and examining how tiny and scar tissued your veins are (crepe paper thin), I, in spirit of cooperation, tell her which veins have had my many blood clots (which was a secondary reaction).

This Lady didn’t need to know that, she assured me. She could feel them. So when she tried to draw blood from below the blood clotted scarred vein, and it gave her no blood, she was shocked. Then she eventually found another one and confidently declared she could get all the blood work right there and then. I resoundingly said no, and feeling nauseous, got out of there.

Nothing unusual. Except, ten minutes later in the car, I noticed my arm was oddly itching/burning, under the skin. Not like a hematoma, which forms a bump of blood underneath (had those too), but not exactly like a blood clot. It turns out, my doctor would confirm a few hours later I had a temporary condition with a name that, judging by the pronunciation, was sure to be a killer word in Scrabble; in practice I had inflammation of a vein complicated with a blood clot. If the technician had headed my warning that my veins were very fragile and left a severely scar tissued one alone, this would have been avoided. However, that would never happen under her watch…. As a result, for the last several days I have had a useless, throbbing, discolored, swollen, left arm, thanks to this willing yet egotistical medical professional.

She had very kindly given my mom her card, since clearly she was the only person in all the years to easily get a blood draw out of me… (Yes, sarcasm is pouring through my fingers.) Let’s just say, my mom threw it out.

Consequences

Consequences

Heart Health Awareness Month

Heart Health Awareness Month