fix you

just because i don’t post about my health every blessed day doesn’t mean it doesn’t loom in my little bear brain every blessed day. everyone needs a hobby in life; and it has become abundantly clear that mine is a career as a professional patient.

thanks to my CVID, i get to do the following at a minimum:

  • hook up to an IV for a few hours every four weeks for my yummy IVIG treatments;
  • visit the hematologist/oncologist every two months and have a look at my platelets – and only if i am well. we get to see each other more frequently if my platelets tank;
  • visit the infectious diseases doctor every six months and find out how i am progressing (and now that mine has changed practices, i get to meet a new infectious diseases doctor — hooray!);
  • get a lung and sinus scan annually, which means i will glow in the dark forever;
  • experience an endoscopy and colonoscopy on a fairly early and often basis; and
  • occasionally visit a pulmonary doctor to ask whether my lungs are getting bad.

(did i mention i pay a zillion copays and thank my lucky stars that i have health insurance?)

lest i forget, there’s my beloved regular plain old doctor, who sees me every time i end up with an infection i can’t lick on my own. that poor guy. i walk in with the weirdest illnesses. i can’t believe he doesn’t run away when he hears i’m on the schedule.

all this gives me little time to think about other health issues that a woman of my age needs. like high cholesterol. heart disease. weight. my vision. that sort of thing. i suppose i could make it my full-time job to obsess, but i prefer to place my obsession with my children. their health concerns are so much more interesting to me than are my own.

but, as being in the hospital so powerfully reminded me, if i don’t take care of me, then i’m not there to take care of them.

so i do.

monday, i went to the hematologist/oncologist office, where i had blood drawn for a platelet check and visited the very wonderful nurse practitioner, who has seen me through negligible platelets, a major steroid hump, and all the joy that comes with it. she is so upbeat, so cheery, and yet so genuine. and she leaves no stone unturned.

however, on monday, one stone was slightly off the beaten path. normal platelet counts start at 150k and work up to 450k. (memorize that in case you end up on medical jeopardy.) depending on which part of my IVIG cycle i’m on, my platelets usually are anywhere between 175 and 200. but too bad for me: i got my little yellow paper from the lab, and it said i was at 155. yes, still above normal, but not by much.

in short, i freaked.

when you have some sort of weird illness or condition, you try so hard to reach for a sense of normalcy in your life. it’s something that having a life-threatening condition strips from you, along with complete peace of mind, as you know what it’s like to have a body that is completely in revolt. mental tranquility is simply not there anymore, although when you’re a parent, you fight hard to fake it, especially in front of your children. they deserve peace all the time. but yet you have these periods of time when denial is as close as you will come to that peace. you embrace it because you want life to always be like this.

but on this monday, denial was peeled away like onion skin, leaving my fear completely exposed. what the hell is happening to me? i thought i had things under control. i thought they had fixed me as much as they could. am i broken again?

i shivered when the nurse practitioner came in the room to see me. how are you doin? she asked, ever perky.

well, i replied, i thought i was ok. but then i saw this paper, and now, i’m not so sure.

she took a look at it. oh, i see. her eyes looked at me apologetically. the platelet number isn’t what you want, huh.

it’s a little lower than my usual, i replied.

you know, she said, our machine is on the fritz and keeps spitting out the wrong numbers. doctor has been on the phone with the hospital and the company – he is furious that no one has given us a new machine yet, what with all the blood we draw. in the meantime, we let the blood sit for 15 minutes and read it again. we’ve been getting better results this way. let’s do that and see, okay?

was this going to be my hematological deus ex machina? i sure hoped so.

the lab rechecked my blood while i went through my personal checkup with the nurse practitioner. and lo and behold, my numbers were delivered: 176. much, much better.

i don’t know how reliable those numbers are versus the first ones. but as far as i’m concerned, i am fixed again for another day.


6 Responses to “fix you”

  1. It is the little things that bring us way up or waaaay down. I’m glad that the machine was off and you’re doing better than initially thought.

    She ought to have warned you about the malfunction!! I’m pissed off on your behalf that you went through that freakout.

  2. Oh honey. That totally sucks. I know what it’s like when you’re trying so hard to hold your shit together and it starts wearing you down. Let’s plan a night out or dinner or a trip to the zoo or a picnic with the puppies. Maybe I could watch the kids for you one evening so you and your husband can get out? Anything. You need a break.

  3. I, for one, am continually amazed about how little you kvetch about the CVID here, every now and then casually dropping in mentions of IV hook-ups and what not. Come on wreke — complain some more please — you are certainly earning the air time!

    Glad the machine was wrong the 1st time too.

  4. me four, glad the machine was wrong. what a rollercoaster for you. would love to hop over the river to see you live one day soon.

  5. Whoa! hang in there! I love your attitude. You come across REALLY strong. smart and sassy, too. All good attitude traits I look up to. Eek, we so rely on technology, don’t we?

  6. thank you all. it was not my finest day. actually, this entire week is turning into a major downer for several reasons. but, happily, there’s always next week 🙂

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