What Happened Before and a Little After (Part III)

by irms

Update 2
Writing these emails is starting to feel more like writing a blog than it should, but how else would you expect me to keep you up to date?  If you’re getting this email, then you must know me well enough to know I won’t be making phone calls 😉  A text message, maybe, but that’s a lot of messages flying back and forth.

Anyway,  here’s whats new (again, with short and long versions for the time-conscious reader):


For The Guy/Gal On-the-Go
Nothing.  Nothing is new.  I haven’t seen or heard from a doctor yet despite my best efforts.  Two more appointments have been scheduled for early and mid-June.

For Those Reading Email At Work
The neurology appointment we were all holding our breath over was canceled due to a family emergency on the doctors’ part.  As I wrote before, this was both disappointing and frustrating.  Since then I have learned that this was not just a family emergency (as if there were worse things), the doctor herself is in the hospital and will not be seeing any patients for 4-6 weeks.  When I came upon this information I asked her office if it would be a good idea to find another neurologist and they said it probably would since the doctor said she wanted to ‘treat this aggressively’.  During the same phone call, I mentioned that we were told that my records had been sent out to various places and that my appointment with the doctor was meant to review responses and determine the next steps.  I was told that the only person with access to whom they were sent and any responses received would be, naturally, the doctor herself.

At this point, I felt it best to wait until my second appointment with a ‘regular’ doctor before finding a new nuerologist.  Apparently, when one is discharged from a hospital, it is a matter of course to make a follow-up appointment, which I did, and which I tried to make good on yesterday.  (Not having a primary care physician [what healthy, 27 year-old has one of those? ] the appointment was made at the Adult Health clinic in association with the hospital.)   Instead, though, after more than an hour in the waiting room, I was told that there was some kind of scheduling error, the book had me down for Monday at 1:40p not Wednesday at 1:40p and could I please reschedule for the middle of June?  What other choice was there?  I did.

This time, justifiably annoyed, I decided to take matters into my own hands and go get one of those primary care guys.  In a nutshell, many doctors won’t take you on as a new patient unless you’re a card-carrying member of some insurance plan.  Oh, didn’t I mention?  I don’t have insurance anymore.  That’s a debacle you want no part of, but I’m going to give you the quick skinny because I like you:  because of all the evil deeds I perpetrated in my younger days, the startup company I work(ed) for has a gap in funding which leaves the employees (myself included) with out many things…one of those things being a paycheck, and another one of those things being insurance.  Go figure.

Incidentally, I just became aware that the instructions to have our insurance put to sleep were sent out the day before I landed myself in the hospital.  Now, this is no one’s fault of course, and there’s no cause to be mad about the situation, but don’t you just have to shake your head at it?  Doesn’t it make you wonder what I’m being punished for?

Again, those of you who know me realize this wouldn’t normally be an issue.  “Ah Irm,” you’d say, “you’ll just go back to your carefree-freelancing days and wait out the dry period with this startup, or move to a new city and start fresh.  Ya big lug.  Ya buddy ol’ pal.  You’re so crazy with your mobile lifestyle.”  And I’d say, “Of course that’s what I’ll do, now let’s go to Starbucks and stare at each other until we make other people uncomfortable.”  But this time, that plan may not be in my best interest.

Many of you have made suggestions and some of them are not bad ideas…some of them have questionable legal ramifications, but thanks for thinking of me anyway.  Among these ideas (in no particular order):

  • Get a lawyer
  • File for welfare/unemployment/disability
  • Have my car torched in a desert and use the insurance money to pay my medical bills
  • Go see Dr. Qwerty over on Blackstone, he removed a growth for an uncle that everyone said was a fixture for life
  • Get a job with a school district again and abuse the insurance plan
  • Keep calling everyone, nurses, doctors, and staffers until someone agrees to see you

Like I said, all worthy suggestions.  And you should know that I’ll be kicking this find-yourself-a-doctor-any-doctor notion into high gear once I can get this insurance fiasco under control.  In the mean time, there doesn’t seem to be much else to do but wait and see (not a skill I would put on my resume).

How I’m Feeling
The truth is, and this is the scary part, I thought I would be feeling a lot better by now than I do.  I thought by now I would be operating at capacity once more and be my normal self (as normal as one can be with the memory of falling to the ground for no reason resurfacing every hour or so).  The reality is that I can’t really seem to pull it together enough to work or be active for a full day.  I feel exhausted when I stand up for too long and I want to eat all the time when I’m not hungry.  (The hunger may be my body’s way of asking for something else [which is what I think], but I don’t know what that is, so I just do as I’m asked and eat to avoid feeling weak.)

Part of this may have something to do with the meds I’m taking, but that’s just a guess.  I now know that there are windows of time when I feel rather normal and those are my opportunities to get a few things done here and there, but the windows have closed on me everyday without proper advance notice.

Because of the way my energy leaves me with such a sudden rush to get out, my family and I have discussed the possibility of my wearing a medic bracelet.  In the event that something should happen while I’m out and about or by myself, it may be wise to have something on my person that says ‘this girl has issues, call her mom’.  I’m reluctant to order such a thing because of the what if’s.  Namely: What if we’re just turning molehills into mountains?

Emotionally I feel a little…lonely…if that’s possible with people around you all the time making sure you have everything you need.  But I think the loneliness is due in large part to my utter immobility each and every day.  Sitting still is not something I do very well.

Psychologically I still feel optimistic.  Don’t ask me why, I don’t really have a good reason to think it’ll all ‘be alright’ with the way things are happening these last couple of weeks, but I do anyway, and you should too.  Together we’ll create a constant loop of positive outlooks growing ever stronger.  Every day I remember that for that moment, everything is still ok.

Finally,  I’ve been getting a lot of questions and emails from some who have shared, or would like to share the news/email with someone you know.  I say go for it.  Why not?  Especially if you’re family, please do me the favor of making sure all the tias y tios have the information they would want to have.  If you’re not family, share it anyway, I don’t mind.

That’s it for the moment.  I’ll write again when there’s something to report.

Unending thanks for everything,

irms