Tuesday, December 27, 2011

Having a POTSY Time of It All

I don’t really give my POTS diagnosis all that much attention.

It really made me think about HOW chronic illness in children sucks so much more than it does for adults. I mean don’t get me wrong, it sucks royally for adults, but before I got sick, I went to school, traveled, had lovers, published poetry, had art on display, learned foreign languages, studied an instrument, learned about the 5 elements, I loved, I lost, I learned, I lied, I lusted, I rode horses, swam in the sea, rivers and lakes, had flown in a plane, taken a train, a bus, learned to drive, been a Fire Fighter and First Responder, moved out on my own, found Art, got married and had babies. So…I had done a few things by the time I was imprisoned by illness. But children…they are having trouble getting out the learning gate and can’t even complete High School because illness ravishes their ability to learn; to concentrate and retain information. Let alone feeling well enough to exercise their young bodies and to enjoy being young. You can't join a team, go on a date, go to a dance, drive your first car, make out, go to the bar, sleepover at a friends house, go to camp, go to college or university, finish High School or go to Prom if you're too sick to get out of bed or stand up for very long.

I didn’t realize that POTS makes you so sleepy, lethargic, hurt and nauseas too.  I thought it was just a blood pressure thing that made you sort of fall down after dinner or if you got up too quickly.  I’ve had the pleasure of meeting some other folks online with POTS and I just assumed that their experience with POTS was way more severe than mine, and attributed my possible POTS symptoms to Masto. and/or Addsions symptoms.  Trouble is, there is a lot of overlap.  So what symptoms belong to what…and what treatment, if any, is best suited to it? Do you use an epi pen for syncoping/fainting/black outs? You do if it’s Masto. and is a drop in Blood Pressure due to anaphylaxis. But do you if it’s POTS related drop in BP and increase in heart rate? Or is it Addisons and do you just need extra steroids?

After I got the diagnosis from my Internist of this condition, I remember coming home to the computer and searching Google frantically for signs of good articles on the subject and only sort of ascertaining what fragmented piece of truth I’ve been carrying around the past while.  My Internist, when telling me this is what I had going on, in conjunction with Addison’s Disease and Mastocytosis, that I needed to be careful getting up from the dinner table after eating and to add more salt to my diet. But that was about all she said about how to manage it. She said I had so much going on, I might not even notice the POTS being POTS but it was present. I left there feeling like it was no big deal. She had sort of implied POTS would take a back seat to Masto. and Addisons.

Perhaps she was right.

The not so subtle observation - that is not lost on me, of course is that…POTS, like Addisons and Mastocytosis is incurable. HOW exactly is it I have ended up with THREE incurable conditions/illnesses/diseases at the same time??? How does this kind of chaos happen to a person? More questions than answers, right? Which always brings me back to the children. Thank God I’ve got these conditions instead of some kid having them. If someone had to have them, better me than a child, yes? (What kind of bargaining tool is that, huh?) Or thank the heavens that I got to experience a bit of life before I got saddled with these illnesses that have changed the course of my life; changed my body, changed my soul and changed my very Being?

I do know I’ll be paying a bit more attention to this POTS thing instead of blaming Masto. and Addisons, especially Masto.,  for just about everything. Time to get a bit more discerning and hypervigilant in my self-observations.

1 comment:

Anaphylaxing said...

I LoOOOooove your blog! Keep blogging!