Category Archives: Personal stories

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With my medical diagnoses, as in life, the third time really is a charm

Magnetic Resonance Imaging / Résonance magnétique

Magnetic Resonance Imaging / Résonance magnétique (Photo credit: www.cihr-irsc.gc.ca)

When Goldilocks tried that first porridge it was too hot, the second was too cold and the first was just right.  The same can almost be said about my experience talking to neurologists over the course of the last few weeks.

When this all started about a month ago I went to my primary care doctor who sent me to neuro doc number 1.  There are two schools of thought in medicine; paternal where the physician dictates a course of action to a patient who dutifully follows it and fraternal where the physician and patient work together.  Given my huge problem with authority figures (wonder where I got that?) the former just pisses me off.  Neuro doc number 1, was absolutely firmly in the paternal camp.  She told me, “You have had two seizures therefore you have epilepsy.  You will get bracelet, you will wear it.  You will fill this prescription and take it.  You will refrain from driving, biking, swimming, taking baths, climbing trees (seriously, what am I? 10?) or ladders.  Avoid stairs and escalators if you can.  Sleep with a mat next to the bed.  Go directly to epilepsy jail.  Do not pass Go!  Do not collect $200.”  Ok, she didn’t say the last part but you get the gist.  Not only did she talk to me like an errant child but she scared the crap out of me.  I am already scared, I don’t need more fear from my health care provider.

Neuro doc #2 didn’t really see me officially but is someone I know.  He didn’t mean to scare me as much as he did, he just wanted to make sure I went ahead with certain tests that I had been blowing off (but the MRI and MRA are scheduled for next week and I have a host of other tests over the next few weeks.  Yes, I am moonlighting as a guinea pig).  He told me that I had to get the MRI & MRA to rule out certain things one of which scared me so much I am not even going to tell you what it was but I am pretty sure I don’t have it.

Meanwhile, I have been reflecting on my symptoms. Communicating is very important to me and it has been a challenge a lot this year.  Sometimes, I cannot find the right word, a problem I never have, other times I can’t speak at all.  I had thought this was laryngitis — and some was — but when I have that I can whisper, when I have this I cannot.  (Good news on that front, can’t talk for whatever reason?  There’s an app for that!  I have Speak it!  on my iPad now.)  Then I stared having seizures and then headaches and now some strange visual thing that only impacts my left eye.  None of this is good or normal.  Time for another doctor.

Enter Dr. Rhanni Herzfeld.  I told her my history and what’s going on now.  I explained, as best I could, my long health history and told her about all the concussions.  She said there just isn’t enough information to properly diagnose me with epilepsy or anything else.  She said she wants to run the battery of tests that are now all scheduled before doing that.  She is really kind and took all sorts of time to talk with me.  She didn’t lecture me on all the things I shouldn’t do or make me feel like a freak of nature.

I may be back at square one but compared to where I was earlier in the week, square one is not a bad place to be.  I have found porridge that is just right.

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Health update; the good, the bad and the ugly

How to Be a Serial Killer

How to Be a Serial Killer (Photo credit: Wikipedia)

I promised to post updates on my health situation so here is the next one.Before I get to that, a note to my friends and family:  Some of what you read here may seem scary and it is but there is no reason to worry because I am really fine.

The good:  I haven’t had any more grand mal seizures since the last one I wrote about here.  The bad:  I have had a number of much smaller seizures — they are super short and I remain conscious.  The ugly:  why does the media insist on continuing to give Donald Trump a platform?  No, he has nothing to do with my medical issues but he really annoys me.

My real problem, however, is from the time the seizures hit until later in the day it becomes really hard for me to speak.  Now, I can still understand everything and know what I want to say, I just can’t say it.  It wears off eventually but if you see me and I am super quiet, you know why.

The universe really wants me to be quiet.    Since last year, I have lost my voice to laryngitis more times than I can count.  And mean lost it completely.  When that gets bad, I sound like a sick dolphin.  I have even written comedy about it — one night when this was happening, my mother called and said, “I just hope you don’t have to call 911.”  Oh, thanks, she knows one of my biggest fears in the world is being killed (and probably tortured) by a serial killer.  That night I had friends text me every few hours to make sure I was still alive. (Side note: I knew someone in high school who was killed by a serial killer.  I hate to admit this but when her brother told me my second thought after I am so sorry for your loss, can I do anything, call me anytime was if I know someone killed by a serial killer, the odds are greatly reduced that I will be.)

For some reason these posts about what I am dealing with now are much harder to write than when they are about past events.  That brings me to why I do it; the support I have received here has been really helpful.  It also means I don’t have to explain everything to everyone who asks.  I am truly ok but my reality is a little different and it is taking some getting used to.

And now I have a favor to ask of you.  As much as I appreciate the support everyone has given, the concern I hear in people’s voices when they call is a little overwhelming.  I have great doctors and everything is being done to get the situation under control. This may seem odd as I have told you all everything here but I cannot talk about my health all the time.

Thanks for reading, being there and helping me deal with this.  Once again, I promise, I am really, really, really ok.

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Can someone explain this to me?

English: In January 2009, President of the Uni...

English: In January 2009, President of the United States of America, George W. Bush invited then President-Elect Barack Obama and former Presidents George H.W. Bush, Bill Clinton, and Jimmy Carter for a Meeting and Lunch at The White House. Photo taken in the Oval Office at The White House. (Photo credit: Wikipedia)

Color me super confused.  President Obama won reelection this week (yay!) and the GOP is running around claiming things like voter suppression, trickery and basic malfeasance.  This after he won most swing states.  This is coming from the party of George W. Bush.

Let me see if I get this right.  Republicans win and it is democracy while if Democrats win, it’s blasphemy.  They didn’t “win an election” they ushered in the “end of days” from the bible. (Can I point out the wins for same sex marriage? Kind of proves the point that the electorate wants Barack Obama to be in the White House.)

Good lord this is tiring.  And I am not kidding about that bible stuff.  I know people who think that.  And none of them are Donald “I cannot let the birth certificate thing go” Trump.  Nor are they Ben “JFK stole the 1960 election” Stein.  And no, they aren’t even Karl “Megyn Kelly has to school me on my crappy math and remind me that the president won because I just hate that maybe I suck” Rove.  Yeah, Karl, you do kind of suck.  Good luck with the super pac, how’d that work for you this year?

In 2000, I worked on the Gore campaign.  By the time election day rolled around, I had been on it for nearly two years.  In my life I have called my mother crying once.  It was when the initial reports were that Gore had conceded and I called sobbing, How did people vote for him?  

I was, in a word, devastated.  DEVASTATED.  Yet, irony alert her — Karl Rove talked about Teddy Roosevelt‘s comments about getting into the arena.  The thing about getting in to that arena is sometimes you lose.  It sucks.  It sucks a lot.  My one consolation was that this is what happened.  I worked for Gore but the country wanted W.  It was years before I would even entertain the idea that the election was stolen and I am not convinced either way.  I never, not for a moment, questioned George W. Bush’s legitimacy as president.  Even if Al Gore should have fought harder with the recount, at the end of the day, he didn’t.  Oh, while I am at it, I didn’t protest the beginning of the Iraq war, which I think was a terrible thing for our country to do (fight the war, I mean). But I didn’t because I don’t believe a, a decision like that should be dependent on current public opinion (Twilight remains popular, do we want that mentality deciding our military decisions?), b, the president has access to more info than me so if he thinks we need to go to war, we do (think FDR in WWII, that wasn’t popular either) and c, I support the president of the United States.  (No, I am not a DINO.)

Note to GOP:  It’s just an election.  There will be another one in four years — though I wish we could wait until after the holidays to talk about it.  You need to focus on better candidate recruitment, get that we are no longer a “Mad Men” country (we are so much more “Modern Family”), and deal with the fact that pissing off big parts of the electorate (women, Latinos, gays) is bad for winning elections.  You lost because you didn’t think that, not because of random conspiracies or anything else.

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You are beautiful, Susie Salmon

Cover of "The Lovely Bones"

Cover of The Lovely Bones

Yeah, I still have insomnia and sometimes when I can’t sleep I watch the movie ‘The Lovely Bones.”  I am watching it right now.

It’s funny.  I loved the movie but hated the book and the reason for both feelings are almost identical.  I will explain.

I hated Alice Sebold‘s book because I related so much to the father.  I know, I know, my father is a dick who beat me mercilessly but I still loved him desperately.  The father in the book works tirelessly to get the murderer of his child.  He never succeeds but he never stops trying.  That upset me terribly.

I loved Peter Jackson’s movie for similar reasons. Take a look at Saoirse Una Ronan in this film.  Take a look at photos of me when I was that age.  We could be the same person.  And I find I relate to her (the character, not the person) in ways that make my heart hurt.

I dunno, maybe it’s a combination of an actress looking like me, some residual love I have for my abusive father and my intense fear of serial killers but this movie has it all.

So, you are still beautiful, Susie Salmon.