Monday, June 11, 2001

Sometimes the gods smile

Woo hoo!  Dr. C is indeed a member of my provider network once again, so I’ll be making an appointment with him ASAP after I get back from Connecticut.

Sunday, June 10, 2001

Don’t read this if you’re easily grossed out!

For anyone with an IBD or similar medical condition, such plain talk is generally the norm… but “polite society” deems speaking of such things to be inappropriate in public.  Which is why so many sufferers go undiagnosed for years, generally until their symptoms become life-threatening.  Fuck polite society anyway.  Everywhere we turn, there’s pressure to be on guard and carefully craft anything we say so that no one feels harassed, or libeled or (oh! the horror!) shocked and offended by our words.  Little by little we’re losing our right to speak freely.  The government faces some (but not enough) opposition to legislate away our 1st Amendment rights, and since it’s a tough road, apparently it’s become necessary to put the burden on our culture to shame one another into never speaking of life’s ugliness.  But I digress.

On March 20, I had surgery to remove the many huge and painful hemorrhoids I got as a bonus for having Crohn’s Disease.  Normally I’d have been back to work in 2 weeks’ time, but because the surgery was extensive and complicated I wasn’t released until after 4 weeks of recovery.  Naturally, before I could be released I had to be examined by the surgeon, Dr.Q.  Since as a Crohn’s patient my risk of developing an abscess or perianal fistula was quite high, during that visit I expressed my concern about a small area that was painfully inflamed and seemed to be draining.  I’ve lived in this body for 39 years, and I know when something isn’t right!  Dr. Q blew me off with, “I did extensive surgery, it’ll be at least 2 months from the operation before everything will be healed.” Whatever, dude… it’s not YOUR ass that’s leaking something that’s not supposed to be there, and making you miserable with the pain.

So I made an appointment with my gastroenterologist, Dr. A, because I knew something wasn’t right, and all the research I did leads me to believe I have developed a perianal fistula.  I see Dr. A and tell him I think Dr. Q’s full of shit, ask him to please take a look.  He does, and tells me he agrees with Dr. Q; things should be normal (for me, anyway) soon, and advises me to continue with sitz baths and keep the thing draining.  Ok, so what you’re really saying is I’m just a Nervous Nelly wasting the time of valuable professionals with my paranoia over something that, while painful and EXTREMELY difficult to live with on a daily basis, is apparently nothing to worry about.  Uh-huh.

Just this past week I went back to Dr. Q for a check-up.  I tell him, “Gee doc, I still have this lump near my butt crack that’s leaking pus out of my anus when I push on it to drain it.” He takes a look and says, “You’ve got an abscess, a perianal fistula.  That’s Crohn’s.  I’ll give you some Cipro, but if it doesn’t go away in 3 weeks, I’ll have to do surgery to correct it.” That was the last straw.  I reminded him (quite bitchily) that I’d brought it to his attention 6 weeks ago, and he blew me off for “worrying over nothing,” when MY diagnosis was correct all along.  I know my body goddammit!  I also insisted that before I’d let him perform another surgery on me, I’d be asking Dr. A to try Remicade infusions.  Dr. Q can go fuck himself if he thinks he’s cutting me again.  After this last fiasco, I’ll be asking Dr. A to refer me to a different surgeon. 

Dr. A just recently started taking care of me when my favorite doctor, Dr. C, left the medical group to work at UCLA Medical Center.  Dr. C was fabulous!  I’d have stayed with him, even driving all the way to Santa Monica for visits, if only my insurance would allow it.  He thought I should put off a hemorrhoidectomy as long as I possibly could, which I did (far longer than I’d have liked, too!).  Shortly before he left, I asked again about surgery.  He told me he’d give me the name of a good colorectal surgeon (who unfortunately wasn’t covered by my insurance either), and that he’d prefer Dr. Q not operate on me, but he had to refer me to him for any surgical procedures because of the medical group agreements.  So I held out as long as I could but by March things had progressed to where the constant pain was seriously affecting my ability to lead a normal life.  Not only do I have to take a dump at least once every day (or 15 times on some days), but I’m a web geek and sit on my ass for a living—just two daily activities that had become nothing less than excruciating.  All I wanted was to have my asshole back!  I should have heeded Dr. C’s advice and seen if there was any way I could have Dr. A find a different surgeon to refer me to. 

Too late now, though.  The best I can hope for is that Dr. A will prescribe the Remicade infusions, and that they’ll work.  If I have to have surgery again, I don’t care WHAT I have to do, I’ll be getting someone other than Dr. Q.  As an intelligent person who has to deal with doctors on a frequent basis, I am absolutely furious over those bad apples who fail to give any credence to what their patients tell them.  I realize they’ve attended umpteen years of school to learn their craft, but that doesn’t give the sanctimonious pricks the right to discount what’s being said and felt by the person who’s been living in their own body their entire life. Because of Dr. Q’s ignoring my concerns almost 2 months ago, I may end up needing yet another surgery that will take me off my feet and out of work again… and I’ve got this painful pus-filled pocket on my ass that requires frequent care at home, where I have everything I need, meaning on work days it doesn’t get tended to and becomes almost unbearable.  Thanks, Doc.

Speaking of work and a painful pus-filled pocket… I hate AOL!  We’re forced to use it for our corporate mail now, and it is absolutely unmanageable.  I spend so much time trying to figure out where mail is in my “handy Filing Cabinet,” that I’d like to request a separate category in our time-tracking program just for dealing with the unwieldy piece of shit every day.  To add insult to injury, my new corporate screen name has already been harvested somehow by spammers, despite the protection we supposedly have when there is no profile associated with the screen name.  I sent a nasty email to the TOS team, not that they’ll give two shits.  The largest internet and media company in the world, and no one can come up with a better corporate mail system than a consumer app written for the braindead?  That’s just priceless.

Monday, June 04, 2001

Things that make ya feel old

I had my 39th birthday and my nephew, Steve, got married on Saturday.  It’s hard to believe that so much time’s gone by since Steve & his brother Mark were in need of babysitting by the wicked Auntie Rox.  I’m one of those people that cries at weddings anyway (even the ones on TV!) but I bawled my head off on Saturday, overcome with emotion.  Steve & Mark were my first real experience with the world according to little boys.  Mark was always high-spirited and friendly, a born salesman (at which he still excels today), while Steve was the quiet little introvert preferring to watch cartoons over interacting with people.  Both boys had their wild times and gave their parents (and the rest of us) quite a few gray hairs, but they turned out to be incredible young men that everyone in the family is proud of.

It was also nice to see so many people from my extended family that I haven’t seen in many years.  I’ve now got nieces and nephews who are old enough to drink, that I haven’t laid eyes on since they were on formula!  Where the hell does the time go?  Could my stepbrother look any MORE like my late stepfather?  That was a bit of a surprise, although it’s not like it wasn’t evident 20 years ago… but still!  Really trippy…