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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Day 300. Goodreads

Sharan called me tonight to tell a happy library story about the children’s librarian at her public library.  Librarians are all goddesses and gods (this means you Katherine Nuss and Carol Sinwell).

Sharan is in the throes of writing a children’s book, so she’s researching other children’s books, and on this trip, I gathered, looking at some old favorites.  She mentioned Charlotte’s Web, which took me on a (another) brief mental holiday.  I traveled clear back to 1970, to a winter Sunday when I was in first grade.  That day, I checked myself into the pink sheets of my bed for the whole day and read Charlotte’s Web cover to cover.  I picked it up after breakfast for what I thought would be a chapter or two, and for the very first time, for a long book like that at least, I couldn’t put it down.  I had a vice grip on it that would not release until I was utterly devastated the end when [GREAT BIG SPOILER ALERT] Charlotte dies at the fair.  And even then, I still loved the book and would have begun reading all over again at the first page, had it not been time for dinner.  We all know I have never been one to miss a meal.  Besides, my next book, The Trumpet of the Swan, awaited me, so I knew it was time to move on.

Since I was four I have been a good, fast reader.  Books, as they say, are my friends.  Or they have been, until I got sick.  As those aneurysms started growing—long before I knew they were there—it seems like someone poured rubber cement in my brain.  So the thoughts are a bit sticky.  The reading device has become slow, glue-y.  My memory?  Oh just forget it.  I don’t mean to be funny.  When the aneurysm ruptured and I had all the anesthesia—twice—well, the rubber cement turned into, I don’t know what, tar, maybe.  Thought processes drag along like mud.

However, because they are plodingly slow, I still have something called metacognition.  I can still think about what I am thinking about and learning. In other words, I still have my smarts about me. Metacognition might be compared to a ladder that I can use to climb my way out of the goop, even if it is slowly.  That’s the plan, anyway.

That means I can think about how little I can read—but, I have found, I am starting to be able to think more about what I have read.  Metacognition is helping me build ladders up and around my thinking and memory problems.  Slowly.  Frustratingly.  But it is working.

So many times I drew a picture for a student with learning disabilities and said, “This is your brain, and this is another learner’s brain.  In his brain, learning makes a straight line from point A here to point B here. In your brain, if we start at point A, there may be too many mountains for the information to get to point B via a straight line, so your brain has to find different pathways.  It will take longer for you to make the trip, maybe for a few months, maybe forever.  But you CAN do it.

Hmmm….it never occurred to me that I might offer this pep talk to myself.  In fact, let me register that I hate giving this pep talk to myself…except that it works.

Thus, I just signed up on Goodreads.com to read 20 books in 2012.  That is laughable.  Hah!  Scott, in particular, will cackle at that number, and if it were only a lifetime ago, Carlos and I would have cackled evilly at the puny number that poor Heidi was reading, particularly since I have nothing but free time!  But there it is…and I feel terribly stressed at the commitment:  Holy shit.  That’s almost two books a month.  And I’ve also committed myself to three journal entries a week, two blog entries, and one art project, as well as one finished writing project a month.  This is a LOT, people.  Well, I guess you never know what you can do until you try, and even if you fail miserably, do it with style (I don’t mean this.  I hate failure.  I will die trying).

Today I did read probably around twenty pages of prose from the book Liz gave me for Christmas, The Cookbook Collector, (only one of about ten fantastic gifts, including, incidentally, a Cary Grant film box set, which I have yet to watch…any takers for a film fest?). But twenty pages is the far reaches of my ability to read at one sitting.

There are not words to describe the loss I feel about my ability to jam through a novel in two days, or even read a magazine in a single sitting–kind of like a death in the family.  At the same time, how great is this?  I’m on a reading marathon.

How much are you reading?  What are you reading?

Day 306. Looking Back, Looking Ahead

This is an idea I’ve blatantly plagiarized from the Crazy Sexy Life Blog (where you can read about Green Smoothies and all kinds of good, healthy living options and vegan food).  Kris Karr’s ideas are pretty compelling when you read her story:  Karr (who is gorgeous) had stage 4 breast cancer, which is very serious, and decided to treat herself with food, supplements, and healthy living.  Seems like she’s doing pretty dandy.

So, I liked her exercise.  Here’s my version:

2011 in Review (with gratitude)

  1. Started a Blog
  2. Said “no” more.
  3. Got to see Casey and Johnny.
  4. Wrote a lot, sometimes more than two pages at a time–a record for me in my present shape.
  5. Hung out more with friends
  6. Great CT scans! The aneurysms did not grow, and if they don’t grow again this time, I can graduate to one annually.
  7. Started literary Salon.
  8. Took a writing class with SARK (Susan Ariel Rainbow Kennedy) and met tons of friends who are writing books, too, who turned out to be better writing teachers than SARK.
  9. Spent a lot of good, happy times with my family.
  10. Kept up with my watercolors, making a couple of fairly good paintings.
  11. Met up with my oldest, dearest friend Scott, who I now hang out with regularly.
  12. Took several tele-seminars in great topics like World-Changing Writing.  They were fantastic and turned me into a full-time writer again.
  13. Got a PEMF machine; use it around 45 minutes every day.  Lowered pain meds dosage on most days.
  14. Tried to be kinder to myself.  Easier said than done.

2012 (What is to come)

  1. Join PeTA (check! done!….I know many of you will be haters because of their very public stunts:  those are the very reason I am joining.  I believe
    that PeTA’s popular culture status does more to promote veganism than any group like the Humane Society [with its obnoxious commercials].)

    Released into the public domain by PETA.

    Image via Wikipedia

  2. See Art.
  3. Visit museums of every kind once every month or two.  And just deal with the mobility issue.
  4. Finish my book enough to start sending it around to publishers.
  5. Get to see more Goddard friends like Lana, Gerard, Mary, and Christian.
  6. Go to the theater.
  7. Take an art class.
  8. Go to the movies more often.
  9. Be organized and present for my writing group, so that we can get our new ideal group off the ground.
  10. Hang out with Scott.
  11. Make art:  watercolors, tissue collage, lunch boxes.  Many media.  Make something once a week.
  12. Try not to think I’m dying right away when it’s just another health thing.
  13. Spend lots of time with the boyz (Harrison, Aiden, Greg, Jacob).
  14. Spend time with the parents.

Day 313. Time Machine: New Year, The Meaning of Life, and Lunching for Professionals

My goal is to keep these entries shorter—for your sanity mainly, but also so that I truly will sit down and write them.  I was unsuccessful at the shortness today. Trouble is, I have so much to say.  It’s hard to limit myself.

I have been lost in my Time Machine, Apple’s external drive that acts my wireless network as well as my backup drive.  I’m trying to put my iTunes music on it so that I can listen to my music on Sonos without waking up my laptop computer.  Easier said than done.  Never mind if this is all meaningless to you. I just am searching for spots on my backup disc for my music to live, but there’s no room at the inn, so to speak.

So I have to travel back in time on the Time Machine (I visit a backup from 11:03 p.m. December 3, 2009 to delete, for example, music files, which are very large, thinking I’ll make lots of room; then I travel to February 16, 2010 8:57 a.m. to delete all the photos and movies, also space grabbers).  The process travels at the speed of a snail. I do, truly feel as though I am sucked backward into a time machine.

There’s even a timeline running up the right margin of the screen, a visual representation of time going backward, to remind me of just how far back in time I can go.  I am lost in this timeline.  It goes all the way to December 2009, January 2010, February 2010, months I just zapped completely from memory. These are months when I had so many more days left to live.

I did it without thinking at all.

That’s the tricky thing about this countdown.  The clock keeps ticking and you forget all about it.  Of course, the relative silence is a good thing.  If I heard the ticking all the time, I would go crazy. Crazier, I mean.  But sometimes, I want to remember the ticking, so that I remember my life.

Harrison, Greg, and Aiden

There are moments I want engraved on the Time Machine, like New Year’s Eve 2011 (or is it 2012?  I never know how that works).  Greg and the boys, my nephews, were here, and we had a party.  Aiden (7) had asked me on Christmas, “What is this New Year’s thing?  I mean, how does it work?”  So, we showed him, with a whole spread of treats (we bought the grocery store out of all the junky treats they chose) and watched movies, and played a fun game.  They told about what they wanted to add to their personalities in 2012 and leave behind in 2011–so thoughtfully.  And Harrison (14) was so cool, even to his brother, and Aiden got to stay up past midnight (more like 1:30!).  So I want that day written in Sharpie on my Time Machine.

I want to remember my brother Jacob coming over in the middle of the afternoon one day this

Jacob–This is how he always looks. Just kidding!

week, out of the blue, to watch his favorite movie, and mine, Monty Python’s The Meaning of Life, both of us cackling like little girls (sorry JJ, but it was true!) and saying all the lines, singing all the songs.  Like:

So remember, when you’re feeling very small and insecure,
How amazingly unlikely is your birth,
And pray that there’s intelligent life somewhere up in space,
‘Cause there’s bugger all down here on Earth.

Then he told me all about what he wants to do with his life, like getting a PhD in biology and teaching at a Community College or University because he loves research.  How amazingly flattering, for one, to think that I might have influenced him a tiny atom of a bit, but so cool for him, most importantly.  That’s worth engraving on the Time Machine.

Finally, Melanie came over the other day for lunch, and we ate some lousy soup I made (I will surely erase the soup), but then we sat on the couches for the whole afternoon just talking about life and everything.  She is so smart.  I feel like a combination gal pal and her co-parent with Carlos (gee whiz, Carlos, but our little Mel is growing up!!).  She also gave me some compelling advice on my book; now, if only I would take it and start writing again (she was the one who pointed out this great connection between my angst over my Time Machine and my book).  That day with Miss Sassy McSasserson (you know her as Melanie) is one I want etched in memory as well.

Melanie McSasserson

These are days I don’t want to fade away, you see.  It sometimes feels like the good days will fade away just as easily as the bad.

Do you have days you want to engrave in your Time Machine/Capsule? What do you do to keep them in memory?