a sort of continuation of yesterday’s post. because you know you want to hear me whine that. much. more. but fear not. i promise; today is a happy post. a shiny, happy post. a post with a happy buzz.

a post with no rain.

somedays, i feel like a professional patient. i have been to a pulmonologist; a gastroenterologist; a cardiologist; a dermatologist; a hematologist/oncologist; an infectious diseases doctor; a gynecologist (well, once a year, whether i like it or not); an orthopedist; and my regular, run-of-the-mill primary care dude… and my dentist twice a year, of course. and that’s just in the past year. and that’s just for me. not to mention the doc-in-the-box i hit up a few weeks ago when my lymph nodes went kerflooey (and my brother-the-doctor, alias BTD, told me to stop taking antibiotics and suck it up… which of course was the correct thing to do once i found i didn’t have strep. lord, i hate when he’s right.)

i spend a fair amount of time with doctors, and not just because i’m related to one, either. most treat me well. some treat me with complete disrespect. i have learned to appreciate many of them and the help they give me. and i have learned, over time, that very few of them really know much about CVID. they know pieces of the elephant, but they’ve never actually seen the elephant. (l’elephant, c’est moi?) (BTD tells me that in his years of practice, it would have never occurred to him to learn much about CVID until he actually had to.) i spend time educating them in a way that is hopefully not pedantic. (my brother larry says i am often pedantic. i try to use the word pedantic in a sentence as much as possible, just to show him i am not pedantic. phooey on you-ey, big brother 😉

seriously, as much as i like sharing what i know with doctors (such as explaining what my IgG, IgA, and IgM numbers mean), it does get exhausting, especially since i would appreciate more guidance than what i can get from the internet. i often marvel at the fact that if BTD wasn’t: a) a doctor, and b) a person who understands what CVID is, i would be fumbling in the dark, looking for that damn pachyderm myself.

so it was with intense pleasure that i met with the immunologist today. i hadn’t seen him since november 2006, when i decided to plunge into a semi-denial state and get a second opinion, an opinion which, of course, corresponded perfectly with his own. sure, i hate his parking lot in bethesda. but he is the best. la creme de la creme. he knows his stuff. he’s up on current research. he listens. (he even let me give him exercise pointers since he, too, just had arthroscopic knee surgery.)

and he can advise.

no, i still have CVID, and i’ll probably have CVID for the remainder of my hopefully plentiful days. i only have to have chest and sinus scans if i appear to be having trouble in those areas (and not mandatorily every year like other people have guessed. it is like he channeled my brother.) yes, he agrees with BTD that getting breakdowns of my IgG groups is not necessary (damn, i hate when my brother is right.) and yes, he will help me steer the train. come back in six months unless i have a problem or concern.

and keep those IVs of gammaglobulin flowin’.

finally. it’s like i found someone besides my brother who is familiar with my tribe of bees.

hello, and welcome to another edition of things that scare me.

what terrifies you? (i mean, besides john mccain as president.) while i don’t have any diagnosed phobias at this time, there are a lot of things that scare the bejeezus out of me. not the usual suspects, i suppose. f’rinstance, spiders don’t bother me. going outside without makeup is a daily experience, so that doesn’t cut it. and i like rollercoasters as long as my feet are not hanging free.

so, things that scare me, in no apparent order:

1) having veins that don’t cooperate with people who are trying to put in IVs. like yesterday, when i ended up having seven or eight holes put in my arms and hands. (two in my right hand, one in my left hand, three in my right arm, one or two — not entirely sure — in my left arm. you should see the lovely purpley-bluey green bruise on my arm.) apparently, between scarring and collapsing veins (as well as 3 sets of IV tubing that weren’t cutting it), my arms didn’t want to cooperate with yesterday’s treatment, a treatment which ultimately took over 7.5 hours to complete. my hand was so swollen that i couldn’t get my college ring off.

i absolutely adore the nurses who take good care of me. i cannot say enough good things about them. i was so upset at one point, i burst into tears, not because being poked hurt (and it did, especially in the hands), but because i felt like i was making their lives difficult. bless them both; they were upset because they didn’t want to make me the human pincushion.

i live in fear that one day, my veins won’t permit an IV thanks to scarring. it’s so unfair; i’ve never, ever been an IV drug user, and yet i apparently have the veins of one. (note to self: i wonder how keith richard’s veins are doing these days?) the day that happens, i will end up with a PIC line, an idea that frightens me not only because of how it is put in but also because those thingies are prone to providing me with a whopper of an infection. which brings me to…

2) infections. normal people don’t worry too much about them. after all, they’ll take an antibiotic for 7-10 days, and off they’ll go. unfortunately, i am allergic to two different families of antibiotics. i have to use antibiotics that are safe for me sparingly, as i will definitely need them when/if i experience The Infection To End All Infections. which could be a simple infection for a regular person, but not for me. which leads me to…

3) not being around for my kids. well, duh. this is every parent’s fear, isn’t it? when you’ve been in a situation where, out of the blue, you lose things you need to live, then you are never the same again. one day, i was walking down the street, having lunch with old friends, doing my job. the next day, i was in the hospital with almost no platelets. if i had done something to precipitate this change, it would make more sense to me.

but i didn’t. just because i possess some wonderful genes, i magically developed ITP, then CVID. boom! everything changed.

in some ways, it has been a blessing. my entire life perspective has changed to the point where i think i’m living most of my values for once instead of glancing at them, like a passenger on the subway watching the blur of movement out the train window. and every day, i attempt to be healthy, though i’m far from perfect on that front.

i’m in remission from ITP. i’m in treatment for CVID. and i’m still shakin’.

and i’m trying to push back the thoughts over when the other shoe will drop.