many people are pissed that i haven’t actually written about my trip to philly to seek a second opinion. i’ll start to remedy that here.

i met with my brother’s immunologist in philly early in feb, and i’ll see her again in early apr. i really, really like her. she, of course, is also a researcher as well as an MD, so she has a very curious interest in the freakshow that is my brother and i. and she already is very familiar with his case since she’s his doctor, so i finally don’t have to explain everything 🙂 i get the feeling that there are two schools of thought vis a vis my treatment. the dr. in bethesda is from the cautious school — he wants me to go on IVIG already because while i am currently not in much danger, he’s afraid that down the road, i will get an infection and it will throw me for a huge loop (especially since i am allergic to several antibiotics). so he’s in the preventive camp. dr. philly, i am sensing, is not as impressed with my numbers (my IGA is in the toilet, but my IGG is merely low) and may just have my immunoglobulins monitored every 3 months or so to see whether i am going south, so to speak. of course, she had me take another HibB immunization so that we could see whether my antibodies rally; i have to go take the post-test on wednesday and we’ll see how i did. i am probably the best immunized grownup in the DC metro area. she’s checking my t-cells, my immunoglobulins, and all sorts of stuff. on the bright side, my platelets seem to still rock 😉
the thing that bothers me more than it bothers my brother is that if this freakshow is genetic (and it appears to be so), then i wonder what this means for my kids and his. i am interested in looking at our genes; my brother feels that if it would impact my treatment, he would go down that path. but if it won’t make a difference, he just doesn’t want to go there. i figure i am fucked as far as health insurance goes, anyway, should i ever switch policies, since i already have a diagnosis of common variable immunodeficiency, so why not check it out. we’ll see what hilarity ensues.

in the meantime, dr. philly told my brother that if i can drag my ass up from DC to see her in PA, the least he can do is drag his ass to PA to take me to lunch after my appts 😉 gotta love this chick. her office staff is screwy, though. they literally moved offices last week, so my reports all went to some place in the sky. i’ve been having stuff re-sent like there’s no tomorrow. i have to prove to the blood folks (quest) that i really am me and really want this stuff to go to my doc’s. sheesh.

so cheer on my antibodies, y’all; last time, they did a little something, though not what a normal (ha!) person’s antibodies would do. i imagine that if we really looked at them, we’d see that they’re probably napping or eating chocolate.

i saw a powerful frontline the other day on the war against methamphetamines. it isn’t every day i am riveted to a show about drugs, but this was amazing… and meth is no ordinary drug. according to researchers, using meth actually changes the structure of the brain, rendering users unable to feel pleasure anymore without the drug. this sort of thing makes it incredibly difficult to rehab abusers.

also according to the show, the drug czar guy who managed to shut down quaaludes (people from the ’70s will remember that disco gem) by going after the factories that produced the necessary chemical was thwarted from doing the same thing for years. thus, the nine factories that produce ephedrine or pseudoephedrine (the ingredients necessary to make meth) had free reign to sell to all sorts of cartels and bad guys, thanks to our friends in the pharmaceutical industry. (you should have heard the lame-ass legislative guy from pfizer talking about that one.) to think that the pharmaceutical companies were more concerned about their bottom line over public health — for shame. though, of course, i am not surprised at all.

so sudafeds and the like must be gotten from behind the drugstore counter in most places, something i support. otherwise, you get these people who buy zillions of packages and then use them to make meth. it probably didn’t bother the folks at the pharmaceutical companies, of course — hell, they probably sold more product that way. but now, people have to sign in with their pharmacist, a move that certainly can’t be harmful to anyone.

i’m ranting all about this because i have been suffering from an upper respiratory snot-fest that has lasted for over two weeks now. today, i went to purchase some robitussin CF, to find that pseudephrine has been replaced with a new decongestant. i am hoping this decongestant doesn’t make my heart race the way pseudephrine does. (some of us don’t go for that sort of thing, you know.) cross your fingers.

since the list of antibiotics i can use without having an allergic reaction is getting smaller and smaller, i am learning to cope without antibiotics (unless, of course, i am deathly. and one day, some stupid little minor bug might kill me. but let’s not dwell on that unpleasantness right now and instead place our faith in the gods at Merck and other pharmaceutically-inclined places.)

i’ve got a nasty sinus infection. the nurse practitioner at my hematologist’s gave me a sample of neilmed’s sinus rinse. not to be confused with cream rinse. basically, it’s a saline solution you mix at home and then squirt through a nostril until it runs right out the other and/or your throat! see what kind of fun you can have when you try homeopathy, boys and girls? so i gave it a whirl. or a squirt, to be more exact. i wasn’t sure it could penetrate my nose, which is in awful shape at the moment. but magically, salty water came out the other nostril (note: stand OVER the sink when you try this at home, friends.)

i don’t know if it will work, but i learned a little bit about anatomy today. how things are connected. that sort of thing 😉

so i thought i was a happy little clam these past few days. i was spared blogging since NaBloPoMo was over (and i didn’t win any random prizes — sob!). i had great platelets yesterday. i was feeling pretty well.

then today, the immunologist called. the long story short: in his opinion, i am in the early stages of developing common variable immunodeficiency syndrome. i’m not in screaming need at the moment, but considering my allergies to a zillion antibiotics, coupled with my history and my antibody levels (i did produce some after those lovely immunizations (yay me!), but not what a healthy person would have done), it is probably in my near-future. i can think about this and decide whether i want to hop right into treatment (for basically the rest of my life) or whether i want to just be monitored for awhile and see how i do on my own (or until the next big health issue comes forward).

i just have to think.

for the past five years, a random weirdness happens to me. i eat something, and the gland on the side of my face blows up, from my ear all the way down my throat, making me look like i am growing a second neck or something. and it happened this morning. the first time it happened, i was in a bar at a party with people from my office. i ate some crabmeat appetizer, and my face started to blow up. strange, too, because i had eaten crab successfully before; but crab being crab, i simply assumed that it was a shellfish thing. my boss at the time, in one of the few acts of kindness she ever showed me throughout our short but harrowing relationship, pulled out an antihistimine and gave it to me. in time, the swelling abated.

but unfortunately, this has happened to me every few months or so — maybe once or twice a year. and i haven’t had crab or even shellfish. i mean, this morning, i only had my usual breakfast of oatmeal and peanut butter and wham! it started. by lunchtime, it had swollen so much, it made me cry to eat. (and i was hungry, too. very little keeps people with my genes from eating. at 20, i had all four wisdom teeth pulled and immediately went to mcdonalds afterwards for lunch. my brother had the same experience, only he went out for a steak. i’m simple not terribly classy. but you knew that already.)

i have tried over time to trace what i’ve done to earn this lovely experience, but there is simply no rhyme or reason to it. if anyone out there knows anything, i am all ears.

and all neck at the moment, too.

long story short: i went for my repeat mammogram today. it was an ultrasound, requested by the original technician after i indicated i noticed some minor changes in my breast. (the changes were so minor that i didn’t even remember much about the conversation.) they didn’t see anything; all is well.

i did, however, give the doctor an earful about letting people know why they are called back and not leaving them in a swirl of suspense. if someone would have only told me why i was coming back, i would not have lost years of my life in worry. he was extremely apologetic and will talk to folks about this.

one less thing to worry about, in any case.