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.

Health status update

Deutsch: MRT einer Hirnmetatase eines Bronchia...

Deutsch: MRT einer Hirnmetatase eines Bronchialkarzinoms (T1 nach Kontrastmittelgabe) (Photo credit: Wikipedia)

First of all, thank you to everyone who has been so supportive and nice throughout my most recent health crisis.  It means the world to me and inspires me to be really careful about this.

This has been a very strange few weeks.  In case you don’t know what happened, about a week ago, I had a grand mal seizure while walking down Wisconsin Avenue.  What I remember is thinking about what I wanted for lunch (Thai or Italian?) and the next second, a paramedic was trying to convince me to get in his ambulance.  As it turned out I had just had a grand mal seizure and my head was bleeding, my knee was the size of a football and I had bitten nearly all the way through my lip.  When I saw all the blood on my bag, I let them immobilize my head/neck and bring me to the George Washington University Hospital.  If you are wondering why I keep repeating what happened, it is because I am still trying to wrap my head around it.

If this was the first time this happened, it would not be as big of a deal but it isn’t.  In 2008, this happened when I was at work and it scared the crap out of my coworkers.  Ever since that, I have described that experience as the scariest of my life.  Then I remember being really sick and then waking up on a stretcher.  The paramedics then asked if I knew my name and I replied something like, “F*&% you!  Of course I know my name!”  Then I realized that I didn’t, which is what makes that so scary.   In February, I had another experience like that.

So last week is a lot like 2008 in that I had been pretty sick before the seizure.  For about a week I was not able to eat or sleep, creating conditions that were a lot like 2008 when I was working all the time and had also come down with a stomach virus.  My hunch is this seizure was caused by low blood sugar.  No, I don’t have diabetes but I have a terrible habit of not eating every day and low blood sugar has been linked to seizures.  For the record, I am making a point to eat every day and I start with breakfast.  I promise to do whatever I can to make sure I don’t have any more seizures.  I do not want to put anyone I care about through the experience of seeing that.

What has happened since the seizure?  I have spent a lot of time in doctors’ offices.  The neurologist I saw diagnosed me with epilepsy, due solely to the fact that I have had three seizures (according to her, two or more qualifies me for this diagnosis).  I still have to get an MRI and MRA on my head but the EEG was completely normal.  She had to alert the DMV so I am not supposed to drive for the moment.  If I go six months without another seizure, I can get my license restored (fingers crossed on that).  Because I believe in doing my due diligence, I am getting a second opinion but in the meantime I am being super careful.

My other main health problem has been anemia and my hemoglobin has been down.  My new primary care doctor prescribed iron and I am taking it.  Even my insomnia has been better.  Since the seizure, I have been sleeping without any medication.  At least twice this week I slept more than eight hours.  Seriously, I don’t know how this has happened but it has been wonderful.

Long story short, I am really fine.  I know how worried people were when they heard I had a seizure and I would be lying if I said it did anything but scare the shit out of me, too.  I have a favor to ask, I am not going to text people health updates and I really need to have some conversations where this is not mentioned at all.  I hope you understand and know how strange that might seem — I am the one who told everyone I have ever met.  My normal reaction to things is to freak out and that’s why I told everyone, also talking about it made it easier for me to accept.  After the initial freak out I usually want to forget the whole thing happened.  That’s where your support has made a difference that might not be totally clear for some time.  By asking me about how I am, you have prevented me from ignoring my problems.  Instead of doing the whole ostrich thing, I am doing the right thing and taking better care of myself than I have in years.

Next steps?  I have an appointment to get an MRI/MRA (with and without contrast) on Tuesday morning.  I am seeing a second neurologist on November 1.  For the record, I am not disputing the first person’s diagnosis, I just don’t like her plan to deal with it or her propensity to talk to me like I am an idiot.  I am also going back to see my primary care doctor and an orthopaedist (follow up for the knee issue).  Both doctors are wonderful.  On a related note, the tachycardia I developed from the seizure has gone away (explanation: the pain from the seizure caused it).  Some of you might know that I was advised to have the back surgery I had done a few years ago redone but that can wait a bit.  So it’s good news all over the place.

The next time I will have news will be either Tuesday (though that’s not likely unless my tests are really strange, which they won’t be) or in early November.  If anything happens before then, I promise to post it here. A la prochaine!