Day 290. A Taste of the Last Ten Years

So for the last fifteen years at least, my body has mystified me…and the doctors.  It’s been a time of frustration, worry, tears, and as a result I have become a de facto junior medical researcher, by way of the many sleepless nights in pain spent in front of Google, searching for a reasonable solution to the puzzle of what ever could be wrong with me.

That’s easy to write, even easier to read and dismiss. But in the middle of that great desert of agony were deep mines misery of that looked like this:

A terrible, frightening symptom appears, and it persists.  Let us say it is headaches, and I don’t mean tension headaches we all get (I get those too).  These are headaches that feel as though my head will explode (remember this detail:  it will be important much later).   Screaming, crying, crawling on the floor, vomiting, vision blurring, halo-seeing, temporarily blind, memory stealing, cognitive function stealing, fucking horrible headaches.  Forgive my profanity please, but one bit of advice (my conservative mom!) gave me to help get rid of pain was to swear about it.  

So a general practitioner doesn’t know what to do with this kind of pain.  I probably saw ten or twenty of these doctors.  What bothered me is that as soon as they heard the word “headache,” it was like their ears turned off. Right away, they gazed at me in that sort of suspicious way from under the eyebrows:  they didn’t see a pain sufferer, but rather a drug seeker.  Who could blame them when their professional journals (you know, like the Journal of the American Medical Association) seem to focus so closely on the overuse of opiates (drugs like Vicodin and Percoset)?  No question that people like to pop the Percoset. Furthermore, the average person can easily feel slightly superior to the an opiate addict, who after all is just a stone’s throw from a heroin addict, and may shake hands with one who can’t get some heroin.  

All this judgment is easy…until we need those very drugs ourselves.  I learned that quickly. However, I hadn’t reached that point early on with the headaches. I just wanted help, as in, “Tell me, doctor, what you know that I do not, so that I can get rid of these *(&^%$ headaches!”  Finally, I reached the point where I would start a doctor appointment this way:  “Doctor, I am not seeking opiates from you.  I am here to ask you to help me solve my problem.”…Too bad none of them ever did.  

So, since none of them suggested it–remember, I was a woman in my mid-thirties, a ripe age for “complaining.”  Studies show that younger women and men with the same complaint get completely different responses from many doctors.  Remarkable, isn’t it? None of this is anyone’s fault, though, I’m convinced.  I’m just saying. Since none of them suggested it, I referred myself to a specialist.  

 I had nothing but time, mind you.  I anticipated living to a ripe, old age back in the early 1990s.  There were days when I might have paid to shorten my life, but it never occurred to me that I might have more wisely rushed things along…that I might be writing to you today, with fewer than 290 days left to live.

To get an appointment with a specialist, in this case a neurologist, takes three months.  Frankly, they are the absolute worst of all the specialists: hardest to see, least adept at problem-solving.  Indeed, if the topic here were neurologists, I could tell you the most horrific bedside-manner stories about them. I know better, though, because there must be some great neurologists out there that I just didn’t meet.  I am sure of it.  The system is flawed, though. My point is that it took nine months to see a neurologist enough times to have tests and do a realistic medication trial of a single drug.  Besides, what if I had an after hours emergency, like a drug reaction (that happened several times)?  Forget calling a neurologist. The one time I was fortunate enough to see one through a university hospital, a resident doctor on call answered after hours and tried to help, which was a good thing.  However, a private practice neurologist disturbed on a weekend did answer, but she was extremely unkind about it.  Now, as a result of her unkindness, if I decided not to work with her, then another year of testing and trials with the new neurologist would (and did, several times) pass.  This was my life, through all the specialists, good and bad.  (By the way, I have really great health insurance, through a PPO, meaning I get to choose my doctors, so I was able to do a TON of research before I choose a doctor.  I know of what I speak because I had an HMO long ago, and that was true quicksand.  In that case, I didn’t have the opportunity to do that kind of lengthy research to find the right doctor; I just got whatever doctor was chosen for me: typically that would be “unluck” of the draw.  

The neurology carousel, that troubled system, meant that if I had an unusual symptom, I would likely never find a doctor or a nurse who could help or explain it to me.  If I had an exacerbation of severe days-long headaches, or allergic reactions to medicines at inconvenient times, too bad, particularly if they were outside of the three-month cycle of trying to get an appointment.  Furthermore, the specialists offered few possible diagnoses; if I didn’t have a symptom set that fit into those possibilities, then the doctors were not interested in working further with me to determine the diagnosis.  I never found a doctor that was interested in doing serious differential diagnosis. After all, headache patients are known to neurologists (and other doctors) to be a hassle.  Ironic, huh?

I tell all this because I had so many symptoms that encompassed so many specialties for so long that it baffled everyone I knew–to the point that it truly seemed I had made it all up to be appalling.  

However, this Wednesday, after being sick for all these years, and having had a ruptured aneurysm three years ago, and finally the informal, de facto diagnosis of Vascular Ehlers Danlos Syndrome, I got to see an amazing geneticist, Dr. Clair Francomano, in Baltimore Medical Center (at the Greater Baltimore Medical Center, which appropos of nothing is very chichi).  Dr. Francomano (I can’t believe I’m saying this) was every bit worth the wait. For the first time in my life, someone understood every single one of my symptoms and was able to make diagnoses and solve problems in sensible ways I never thought would be possible.  We met one time.  ONE TIME.  It was long.  Four hours.  That’s long for anyone, but for me, it was an endurance (pain) test.  I didn’t mind a bit.  The whole time, it felt like my body was electric.  It was.  It was plugged into a grid of unbelievable brain power, caring, and intention to help.

Tune in next time for what it was like to meet the geneticist….

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17 thoughts on “Day 290. A Taste of the Last Ten Years

  1. If someone gave me a medical school to run, your blog would be required reading. Neurologists would have to memorize it.

    And I love the name “Clair Francomano.” If I were writing a novel about a smart, intuitive, pragmatic doctor, I might give her this name.

  2. Ouch. In my limited experience with doctors, I find them – on average – worse than English professors. What they don’t know is a lot, but since, as a patient, you tend to know less, they place the onus of ignorance all on you. I actually like my current physician, Dr. Nino. She is clear, didactic without being patronizing and willing to explain things to you. Having to deal with a twisted health care system as the one we have in the States does not help, either.

    Important question about your doctor: is she cute? That is always good. And if you translate her last name (sort of) into English, you get Dr. Honesthand. Not too shabby.

    • Oh, that is very interesting. Honest hand–or Frank-hand, and indeed she is very frank, as in no BS. She looks more like a very sweet, motherly type, exactly the sort of person you want to deliver the kind of news she is delivering: one who can hug you afterwards.

  3. Dear Heidi, Barbara Marx and I have thought about you off and on, wondering how you are. I am at school today and read your blog with fascinated horror, but am glad you finally found someone who listened to you with understanding. I am eagerly waiting to hear more from you. Margaret

    • Margaret and Barbara–I am thrilled to hear from you! How wonderful that you are reading my blog. I am really flattered. This genetecist I just recently saw is really remarkable; she has identified several issues I have that may be causing much of my pain. Treating them will be challenging, but at least I have an answer. I’d love to see you two….maybe we can figure out a way to pick you up and have lunch with Dianne one day? xxo Heidi

  4. Sweet Heidi; You inspire me to no end, and I so admire your courage and your gift with words to communicate with us your inner world. I feel priviledged to have a glimpse into it. I cannot think of you without smiling or seeing your radiant and beautiful smile! I love you, Kaya

  5. Hey Ms. Heidi,

    Carlos shared your blog with me and I couldn’t help but pass it forward.

    Damn, girl, you are TOUGH! I love seeing you so much in your entries. It’s like having you back in the office. Keep at it, Heidi. You’re storytelling has always been amazing. Your blog doesn’t disappoint!

    Maybe we need to get you a box set of House?

    Great big giant hugs!
    S

    • Hey, girl!! I’m not so tough. It’s all smoke and mirrors. I just leave out the days where I am in the fetal position. (Joke, mostly!). So nice to hear from you, love! Miss your smile! xxoxo

  6. Pingback: Day 286. You Can’t Study For a Genetic Test | heidiwriting

  7. The standard joke about neurologists (I learned after I saw one myself) is “diagnosis and adios.” No treatment plan. No follow up. Just the exam, a few tests and then the Learned Pronouncement, which boils down to either “I’ve seen this before, yes, thank you for coming in” or “There is nothing wrong with you.”

    Thanks for sharing this saga.

    • MORE: I mean, really thanks. You go, girl! I had no idea what you’ve been going through lo these many years. “Can we please get an image of my head? Please? No?” Jeez. Loved it that you started saying, up front, “I’m not seeking opiates from you.” C’mon, doctors of the world. Shape up.

    • Eric–that is hilarious! SO True!! I have a whole story in my book about returning to the neurologist who saw me on the day that my aneurysm ruptured….and missed it. I raged at him in my head for a year while I recovered. So I go back to him just to tell him how pissed off I was and ask him how he could have missed something so obvious. I’ll never forget his face (and I liked the guy!), “Uh, yeah, that wasn’t what I was really looking for…” He skipped straight ahead to the adios!

  8. Pingback: What Happened When My Life Was Turned Upside Down After a Traumatic Brain Injury? | braininjuryselfrehabilitation

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