Monday, October 26, 2009

Medical Mayhem Week

No, this isn't an actual or blogger-invented holiday. It's just what happens when you schedule three doctors appointments in a row, and the first goes terribly wrong.

Doctor # 1:

Last Wednesday, I was scheduled to see an Infectious Disease specialist in MD. He was supposed to be able to tell whether my Eppstein Barr levels point to chronic mono, and whether that means he could diagnose me with chronic fatigue syndrome/ME. I had typed out four pages of medical information on me-- what drugs I take and in what doses, my health history, and my symptoms in order of severity, among other stuff. I had even printed out a copy of the Canadian handbook for diagnosing ME/CFS, since it's just way better than the CDC's. I was ready man. Next stop: diagnosis!

Only, my mom and I didn't quite realize how much time it would take to get to the next stop when driving through Washington, DC AND Baltimore rush-hour traffic. Ugh. Ugh, ugh, ugh, ugh. It was not pretty.

Then there was the fun phone mix-up. When I realized we were going to be late, I called to tell the doctor's office, in case they told me to turn around, that they couldn't see us today. Some apathetic lady said she'd pass on the message. An hour later, as we were literally exiting onto the road that the clinic was on, another lady called me and said, "Excuse me, miss? This is Doctor Hudgen's office. We've never heard of you, but we got a message that you're going to be late for an appointment?..."


So I made a few more calls, managed to get in touch with the RIGHT office this time, and told a snarky lady we'll call Dede what happened and how we were pulling in right now. She says ok, hangs up, then immediately calls me back (?) to tell me that the doctor can't see me anymore.

I'm going to back up here. I get it. I know we're late. I know it's not totally our fault we're late, and it's definitely not our fault that we didn't contact the office in time (that would be the building director's mea culpa). But, I also realize that schedules are schedules, and I understand that the doctor has other commitments. So, I get both sides of the story, but that doesn't make it any less frustrating. We drove TWO and a HALF HOURS to get there. I want a diagnosis!

We ended up getting the name for an infectious disease specialist in our area (Annandale! Woop woop!), but then found out that I need to see not just any old infectious disease specialist (as if that isn't specialized enough), but a specific kind that actually believes there's a link between the Eppstein Barr virus and ME/CFS. In other words, after swearing never to drive back to MD again... I have to call and make another appointment with MD. And it took me two months to get the one I just barely missed!

*shakes it off*

Doctor #2:

Much less traumatic and much more mundane, my second appointment was with my orthopedic, Dr. Robert Redford.

(No, that's not his real name, but that's who he looks like, so that's now his fun code name. Really, I'm not into older guys, like not AT ALL, but my orthopedic is a very handsome older man. It's impossible to deny).

Basically, things looked good. I could see my bone regrowth and I'm allowed to wear shoes, plural, again, but only if they're sneakers or very stiff-soled. He made it very clear that I was not to wear "little slippers" (a.k.a. ballet flats, which basically make up my whole shoe wardrobe) until my foot was completely healed. Although he probably doesn't really support that footwear choice even then, but at that point it becomes my problem again. Besides, we're entering boot season, so that should allow ample time for my toesy to heal.

Doctor #3:

I loved this doctor, although I'm still a bit undecided on whether this is the best place for me to be. I went to her as an endocronologist/thyroid specialist, but she's an internist as well, so who knows? Maybe she could be my full-time doc? Too soon to tell. But she checks email, is easy to get in touch with, and she actually listens and spends time with me. She looked at all my charts and gave me some things to try while we wait for other tests to come back. I'm now taking a probiotic with lunch or dinner every day, and though I've only done it twice, it seems to help with my GI issues. I'm also on some anti-thyroid drugs... I'm taking half a pill at night until about Wednesday, when I can start taking a full pill every night. It'll be a couple of weeks until we know if that actually helps. We're trying that because the beginning of my ME/CFS problems began with a bad bout of acute thyroiditis. I think I had mild issues before, but that thyroiditis really took things up a notch. So, Dr. Goodbar (again, made up) and I hypothesized that the disease could have knocked things out of whack hormonally, and so it couldn't hurt to just test and see if adjusting the thyroid hormones made a difference in my symptoms. So, I'm a bit of a guinea pig right now.

I haven't quite recovered from this week's ridiculousness, but I'm getting there. By Friday, I was sick again; and by Saturday, I was both sick and experiencing a lot of dizziness, which I suspect might be from the new anti-thyroid drugs. I don't mind waiting out the new symptoms, but I do wish I had planned it a little better. I had to miss my 5-year high school reunion and, psuedo-masochistic reasonings unknown, I was really looking forward to going to that. I've lost touch with so many people from my lack of energy for keeping in touch, and it's recently become really important to me to undo some of the damage I've done. Some friends just won't understand why my life is how it is right now, and I'm coming to terms with that, but I've discovered that most people, if given a chance, will pleasantly surprise me. I am lucky to have been blessed with good friends... I just wish more of them lived nearer to me!

Well, this post has become rather long. Thanks for reading, and I hope that life brings you joy in all its many forms. Ciao~


  1. Sorry to hear about your crazy appointment schedule--especially with the missed one. I had to cancel an appointment recently due to a lack of available parking nearby, and it was incredibly frustrating. I think it's still quite difficult to get a CFS diagnosis. My first doctor (years ago now) did not want to diagnose as she felt she would be able to find an underlying cause eventually. I was misdiagnosed with a thyroid issue due to a single test that was never replicated, but I never went through treatment bc my hormone levels were fine. I hope for your sake the thyroid meds help, because any help is fabulous with CFS symptoms. I finally got a diagnosis when I was referred to a knowledgeable rheumatologist who sent me for a tilt-table test and determined I met criteria (both CDC and Canadian). Not much has changed treatment wise though. Good luck in your medical journey--appointment after appointment without answers is never fun!

  2. Whoa, that sounds like some kind situation. You poor thing. Isn't it nice working with a doctor you feel actually cares about your situation? Our first doctor was like that - amazing. It made all the difference in the world.
    Take care,

  3. Oof, I hate it when stuff like that happens...sorry! Good luck getting back in.

  4. Hi. I had Glandular Fever (also known as Mono) in Nov 2007 and never got over it. I was diagnosed by an Infectious Diseases specialist in March 2009 with CFS. He just checked me over, read all my notes from my GP and asled me questions and told me I had CFS. I'm from the UK though, so perhaps it's different.

    I do understand the struggle to get a diagnosis; I was going crazy wondering what was wrong with me until March last year!



Related Posts with Thumbnails