How hard can it be to get well?

So let’s begin with the two words that have come to define me of late.  IDIOPATHIC.  HYPERSOMNIA.

Easy huh?  No?  Okay, here’s what Mr. Webster has to say about first idiopathic, then hypersomnia.

Idiopathic:  arising spontaneously or from an obscure or unknown cause

Hypersomnia  : sleep of excessive depth or duration

Now put the two together and two things will become obvious.   One, I have a sleeping disorder.  Two, the doctors have NO clue what it is or why I have it.  Yes my friends, idiopathic is the medical profession’s catch all for  “Ummm, well Ms. Riley, honestly?  We have no idea.”

Now, let’s take this a bit further.  Treatment for this mysterious sleeping disorder began oh five years ago?  Ritalin and Adderall.  I was INSANELY happy with this treatment for hmmm, about seven days when my entire house was spotless, dinner was on the table when the husband and child were hungry and I could have easily been attired in a lovely summer frock complete with heels and pearls and an immaculately coiffed updo. 

Unfortunately, I didn’t sleep at all that week, but hey, tit for tat, I was happy.  The initial bliss, despite it’s short lifespan was followed by what I would call acceptable results.  I could take my medication and actually imitate consciousness for extended periods of daylight.  If I happed to have the misfortune to wake in the middle of the night, well sleep was a thing of the past, but then most of  the time I’m more dead than alive when sleeping so even that wasn’t a real bother. 

Fast forward five years.   First in a series of seriously sucks to be me events was losing my job.  A job that I devoted 24 hours a day, 7 days a week, 365 days a year to for three years and suddenly it’s gone.  Part two of that particular episode was the refiancing of our home including a cash out to add an approximate 2,000 sq. foot renovation of a garage with an upstairs apartment and replace kitchen appliances and windows.   The appliances and windows were completed and the remaining funds went into paying our bills when it became obvious that a job was not going to be immediately forthcoming.

NOW…..I’m mid 40’s, was making a decent salary, and was depending on receiving the backpay that I was owed from this employer.  Backpay that I was ignorant enough to forego to help a business that experiences seasonal fluctuations in income, totalling $16,600 give or take a quarter.  I won’t go into the ugliness that ensued, but I was able to draw a fraction of the unemployment I was owed, and I say fraction SINCE, having foregone pay for as long as I did, it also affected my unemployement benefits.

Finally I began a new job at a restaurant waiting tables.  I enjoy the job, it’s fun and I’ve made a lot of new friends, but I can tell you it’s not as easy as most people think.  No, not intellectually, but physically, it’s demanding.  For months after I started work there, I would limp home to sleep the time away until I had to go back for my next shift.  I’m getting ahead of myself though. 

After the refinance cash out money was exhausted, Countrywide I’m determined tried it’s best to reclaim our home.  Yes, I said it.  The mortgage industry isn’t interested in helping us poor folks keep our homes, they’re worried about getting them back so they can make their money back on them.  Yes, so we happened to get three house payments behind.  Workable right?  Not.  To make a long story short, after much confusion and many lies on the part of our mortgage company, we were forced to march down to their lawyer’s office with a big fat check in hand on the day our house was to be put on the auction block. 

Where am I going with this?  I’ll tell you now, since you’ve been patient with me so far.  DEPRESSION.  Yep, I assure you it’s not a happy happy joy joy kind of experience.  Depression my lovies is a dastardly and way too often overused diagnosis, but it’s effects are real.  Fatigue, loss of interest, pain, etc., etc., etc.  Soooo, what’s the answer to depression?  Meds.  In this case Cymbalta.  Okay, so it wasn’t just for depression, it was also touted as a wonder drug for people with fibromyalgia and chronic pains which yes, unfortunately I’m feeling all too well.  The little issue that keeps making me go “Hmmm?”  is that although it has worked beautifully for the depression and pain, it’s also a sedative.   Do you see the irony there?  Let’s do a little math shall we?

Sleeping Disorder + Sedative = Zombie.

This too was just another brick in my odd little wall until the doc I’m seeing for the sleeping snafu decided that the medications I’ve been on for five years are obviously not really working anymore, so the only thing to do it go off them and wait a while to see if my body will like them again in a week or a month or what have you.  OH and in case I forgot to mention?  Don’t drive, work, operate heavy machinery or try to feed yourself while you’re off the meds.

So now we’re up to the present and the actual topic of my rant.  I might have also forgotten to mention that Ritalin is a HUGE bonus that helps with focus and clarity lol.

Soooo, last Wednesday it was.  Scheduled to work 5-11.  Started feeling REALLY nasty around the time to pick my daughter Kitty up from school.  Serious back pain, legs feeling oddly like vice grips were squeezing my thigh bones hoping to get some kind of voodoo bone dust, and yes, chest pains.  Now, I’m NOT an alarmist.  I went on to work like a good little girl, and within two hours was in tears curled up in a little ball.  Several visits to the ER later, I had the requisite IV’s, antibiotics and fluids, along with a few pain killers thrown in for good measure.

Now it’s Tuesday, nearly a week later.  Still no work, still in pain.  The ER doc says to follow up with my GP right?  Okay, so I made the appointment with the PA since my GP is booked up.  I go in and of course the nurse asks why I’m there.  “To follow up about an ER visit.”  Hey that’s what they told me to say.  Then the PA comes in and asks the same question and gets the same reply. 

Despite feeling like a particular nasty pile of poop, I’m actually being pleasant and easy to get along with.  Yay for me.  UNTIL.  She’s going on and on and telling me about needing to see a Urologist which btw I’ve been down that path and got as far as the doc could take me.  My bladder is being a bad little bladder.  It doesn’t seem to like to get rid of all that extra liquid to the tune of a Coke bottle left over when I don’t FEEL like I have to pee anymore.  ANYWAY, so I ask her about the leg issues and the chest pain.

Wait for it now…..

She gets PISSY with ME!  Says I didn’t SAY anything about the chest pain and leg pain.  Which umm, I distinctly remember mentioning when I made the appointment and again during the course of our conversation which obviously she wasn’t listening to since she was furiously writing notes about seeing a Urologist.  So now Ms. Pissy as I shall call her runs off to get her nurse to administer an EKG with that look that says “OMG I cannot believe YOU, you KNOW this is a waste of my time.”  Enter said nurse with machine and little paper shirt, which I might add, I loathe. 

So yes, I laid there half naked since a paper shirt does NOT constitute clothing in ANY universe and subjected myself to said EKG.  Ms. Pissy makes her entrance upon completion of this procedure and in what I have to give her credit for pulling off well, a very alarmed reaction that the EKG was “abnormal and troubling.”  It’s NOW of course that she decides to pull out her trusty stethoscope and actually take a little listen to what might be going on in there.  Things are starting to get convoluted now, even for me which is saying something. 

Turns out, “it’s not supposed to sound like that.”  DUR.  Mhm, just DUR.  So now, urologist forgotten for the moment it’s the Cardiologists turn to take the spotlight.  I’m given a little piece of paper that says to go to the imaging center for a chest x-ray immediately.  Forgive me for being confused, but as I’m ushered out of the little room thankfully minus the paper shirt and back in my husbands hi-jacked tee-shirt, I’m really not sure what’s going on or what to do next.  I stop and ask someone who seems to be just as confused as I am and she says to go to the imaging center for x-rays.  Again.  DUR.  I ask of course, being a concerned patient, what to do after that since there has been some rather intense discussion about urologists and cardiologists including the words “alarming” and “not supposed to sound like that.”  What then?  She says?  We’ll call you.  Ooooookay then.

This is where the cell phone rant to my husband actually took place.  Yes, he’s a good man.  He “Mhmmmm’ed” and “I agree’d” for about 29 of the 30 minutes I ranted until I pulled into the parking lot of the imaging center and released him from rant recipient to stalk across the parking lot probably muttering things I don’t remember under my breath.  Yes, it’s pissy, but it didn’t help that Ms. X-Ray technician asked me when my “beerrsday” was.  My what?  OH you mean the date I was given life on this now utterly confusing and frustrating planet?  Yes, that would be the day.  -headdesk-

At least the shirt this time was actually something you could at a stretch call fabric.  Pretty blue too.  The whole thing was completely painless and I when I asked what I was supposed to do now, hoping that some miraculously aware person had just fallen from the sky who could make all this make sense in a magical way.  Ms. “Beerrsday” looked bumfuzzled but a disembodied voice from beyond says the results will be given to Ms. Pissy aka the PA today.  Finally! 

So, somewhat mollified now, I take to my favorite pasttime.  Hope to nap away the time until they call, phone on the pillow beside me.  I wake hours later wondering if perhaps I’ve missed the call, slept through it perhaps.  No.  No missed calls.  Okay, it’s only 3:00 pm so there is time.  I decide to call at 4:00 if I haven’t heard anything by then.  4:11 I dial the number and the receptionist, equally clueless quickly forwards me to the nurses voicemail. 

God…if you’re listening, forgive me.  I didn’t intend to lose my patience and get pissy with the voice mail machine, I swear it!

It’s now 5:43.  You know what that means.  My message lies in the dark bowels of physician office forgetfulness of anything that transpires AFTER the magical 4:00 hour.  In the meanwhile, I’m hurting, feeling a lot like a convoy of trucks that might well have been led by Smoky of  “Smoky and the Bandit” fame behind the wheel.  I’m tired, miss my Ritalin and Adderal, HATE taking sulfa drugs btw, and just KNOW they’re going to take me OFF the Cymbalta since apparently the ER tests showed elevated liver enzymes indicative of liver disease which is a common side effect of this miracle drug that allows me to go hours at a time without blubbering uncontrollably.

If I was Secretariat, they’d have shot me by now.

I just want to FEEL good is that too much to ask???????