Episode 19: Wonderful (Not) Wegener's Granulomatosis

My health journey continues to lead me to places I've never dreamed or heard of.  I mentioned earlier that my ENT thought I might have Wegener's or a similar condition.  I saw a rheumatologist at Johns Hopkins on July 18, and she has initially diagnosed me with this oh-so-wonderful disease.  She then sent me for a CT scan of my chest--lots of pulmonary and airway issues, which are common with Wegener's--and a slew of blood tests.

Now, we may yet find out it's not Wegener's; perhaps it's cryoglobulinemia, which has many of the same effects.  Since I also have hepatitis C, the cryo is a good possibility--it is common with folks who've had hep C for many years, as have I. Wegs and cryo both affect the blood vessels, which then affect vital organs, such as the lungs and kidneys. When I say "affect," I mean more or less destroy.  It's true--my nose has necrosis (dead tissue) in it from the inflammatory damage. So far I have not tested positive for ANCA antibodies, which would have just about confirmed the Wegener's.  But that doesn't mean I don't have it, as a small percentage of "Weggies" tests negative and/or may develop the antibodies later.

From MoonDragon's Health & Wellness
http://www.moondragon.org/health/disorders/wegenersgranulomatosis.html

             

Episode 18: Wegener's Granulomatosis?

Could a diagnosis for all my weird symptoms be in the offing?

Last week I met with an Ear, Nose, and Throat doctor.  He looked over my file without much concern, and then he put a lighted scope of some kind into my nose.  He very quickly took it out, put it down, put his hands on his lap, and said, "Not good, Mary.  Not good, Mary."

I didn't panic.  I've been concerned for some time that something is going on in my lungs.  As for my nose--well, I've always had trouble with it.  Recent problems have been a bit more dramatic, but I've probably had sinus problems for years without even knowing that's what they were.  Before I went to the ENT, I'd told my primary care doc how my cough, difficulty breathing, and sinus problems just don't seem to go away.  I've had three courses of heavy-duty antibiotics this winter--two Z-paks and one other pack of some kind, and yet I still have a sore throat, sinus crusting, and some difficulty breathing.

Episode 17: Albania!

“Or, should I say, ‘Al – Ba – Ni – A?!’”

Say this word to a good percentage of persons of a certain age (and younger ones, thanks to re-runs), and you may hear these syllables repeated in rising crescendo, roughly to the tune of “The Saints Come Marching In”:

“Al – Ba – Ni –A!”  followed by the line, “You border on the A – Dri – A –

tic!”

The clip from an early season of Cheers can be found on YouTube.  Coach is helping Sam study.  With his characteristic seriousness-cum-goofiness, Coach employs a well-known mnemonic device, creating a song to help Sam remember the facts for his test.  The song, however, employs none of the musical techniques that help us retain facts, such as rhythm or rhyme.  Which, in addition to some fine acting, is why this bit is so darned funny.  See it here: http://www.youtube.com/watch?v=hxMF9SsaZns.

Episode 16: FAIL!!! Part Deux

See Part One for the prequel.

The first time I noticed something wrong, I was working part-time at a community college and commuted over an hour to the closest university with graduate programs in English.  There, I took two courses and taught two sections of Freshman English.  Of course, I was also a single mom with two boys, the older one just entering his teens.  My schedule was tough.  I described it in a Christmas letter, to which one person responded, "It sounded like a cry for help."

But I was thrilled.  I was doing what I was meant to do.  Yes, teaching caused me extreme anxiety, but over time I got more comfortable in the classroom and even had some amazing classes.  But I was feeling awfully tired.  "My stamina is so bad," I thought, but I had no idea why.  I was only thirty-seven.  I wasn't overweight and, as far as I knew, I was perfectly healthy.  Why did I feel as if I were walking under water most of the time?

Episode 15: On Being an Underling

I spent a lot of years in college to get away from being the “underling” in an organization.  I’d experienced that subtle apartheid as a secretary in a corporate DC law firm, and I did not like it.  Here I am experiencing it again, some twenty-five years later after two master’s degrees, and I still do not like it.  But the question is:  How important is my ego?  Not nearly as important as it was when I was twenty-eight, naïve, and idealistic—important enough then for me to enroll as a freshman at a state university when I was thirty.  Now, I have to be practical.  I can’t tell them to kiss my rosy red ass and quit.  Obviously, the “Little Me” inside me is annoyed and somewhat aghast.  The “Big Me” sees it as an interesting point in my career—and my life--and a time to reflect on my own reactions to this ego hit.

Episode 14: FAIL!!!

A better ending for the previous year could not have been had.  In my mailbox today lay the last sentence of a bitter chapter (Chapter 7) in my life: a court order granting my bankruptcy.  Oh, the consequences of the triggering event are not over with and never will be, but now at least I can look toward a brighter day with a hope that has been difficult to conjure since September 2008.  I’m starting over financially—not completely with a clean state, as I’ll still be paying student loans—but I’m okay with that, other than the interest gauging me every minute.  Somehow it seems apt that higher education and I remain tied together, despite our bitter divorce.  I owe so much to ol' H.E., personally and intellectually. Yet higher education is why I’m bankrupt in the first place ... one of those dichotomies in life than can never fully be reconciled, so to speak.