Life in my head...

ER visit

After missing several days of work, and after a fruitless visit to Urgent Care, I gave in and went to the ED (the name the hospital I work at gives the ER).  I was treated like a princess by the doctor, but I was very, very frustrated with my nurse.  I'm a nurse, so I'm fairly lenient about most things.  If you leave the cap to the IV tubing in my bed, feh, I don't care.  I probably do the same thing at least once a week.  Medical equipment produces an amazing amount of rubbish, and sometimes it doesn't always make it to the garbage.  I was getting Magnesium Sulfate IV, and it was being infused via an IV pump.  It's the same pump we have in our unit, so I know how to use it.  If you have a bag with 100cc in it, you set the pump to infuse 99cc so that air doesn't get in the tube.  Well, Nurse Cheerleader neglected to do this.  I noticed the air, but only after the point where air was air, and the amount didn't matter, so I let it go until the pump alarmed.  And it alarmed, and alarmed, and alarmed, for several minutes.  Normally not a big deal.  If I'm busy in another room with another patient, the same thing might happen to me.  But the big deal with this was that I was in the room closest to the nurses desk, and I could hear her out there talking (she had a very distinctive laugh),  Finally she came in, and was flummoxed by all that air in the tube.  She fiddled around for a bit and then said, "Oh, I'm just awful at getting air out of lines.  Maybe it will work anyway!"  And then she tried to get the pump to infuse.  To infuse a butt load of air into my vein.  Granted, I know how much air it takes to actually kill someone, and we were no where close to that, but my body is flaky without adding tiny emboli to my blood.  So I had to instruct her step by step on how to get the air out, and then I ended up doing it myself.  Tim said afterwards, "I'm proud of you baby, you were so patient with her!"  Well, occasionally I can do something angelic every now and then.  That was my one angelic moment for the year.  I guess I was so patient because they'd pumped me full of Stadol before all this happened.  Heavy-duty narcotics can tame the fiercest of bitches, and they usually tame me (me a bitch?  surely you jest!).  I was content to lay on the table and blather to Tim while he tried to read a book.  Demerol makes me happy just to exist like a lump of fungus, quiet and unoffensive.  Stadol, however, makes me chatty and cheerful.  Tim was also on his best behavior.  He didn't mutter curses at anyone in the waiting room for a nice change.

I'm listening to Iris Dement, from the Songcatcher album (If you love historic ballads, this is a must-hear)
I'm reading Gerald's Game by Stephen King

Today

I hurt today, and that makes me sad.

The look that screams "Migraine Fabulous!"

I woke up at 4:00am this morning, I've been yawning all day, and I've got the look.  The look that says, "Don your fave nighty, grab an ice pack and an emesis basin!  It's that time again!"  The apples of my cheeks have taken on a feverishly rosy hue, that indicates either a chronic Absolut habit or impending migraine.  Since I'm barely even a social drinker, it must be the latter.  I'm dying of anticipation here.  As I believe Tom Petty so aptly put it, the waiting is the hardest part.  I feel so-so now, but I know that at some point in the very near future, I'll be frigging miserable.  At least I have a clean house in which to spend my misery, the maid came today.

What I'm reading right now:  The Running Man, Stephen King

I'm listening to Shooter Jennings

Clomid and migraines...

DO NOT MIX.  Not that I really figured they would, but I was amazed at how bad it was.  I haven't had a migraine like that in a long, long time.  Luckily, migraines are passing (sometimes they just pass closely together!), and a child is forever, so I can take it.  I'm really hoping I have a brief, sweet, very successful relationship with Dr. H and her crew.  They are great, but I won't be sad when I--with baby in arms--bid goodbye to them.

Plenty of migraine content

Well, less than 24 hours after I rhapsodized about my wonderful new life, I was hit with a horrible migraine.  I sat straight up on the couch, because moving hurt entirely too much.  When the sun started going down and the light was too bright in the living room, I finally crept to the bedroom and crawled into bed.  The pain was absolutely horrible.  If Tim hadn't been so busy at work, I would have asked him to take me to urgent care.  Normally, I wait at least 3 days before I finally give in and go to urgent care or ER.  Well, it's now day 3, and I still hurt.  Not as bad, thank God, but I still hurt.  I have had some breaks, but it won't go completely away.  I managed to work last night, and I'll probably work tonight, too, but crap I hurt.

A thought

I was asked to start this blog by a dear friend.  Teri is an author, patient advocate, and fellow migraneur.  So, I did.  I thought I would have witty insights on life as a sufferer, pitiful complaints about my daily struggles, and the moans about the frustrations of ineffective medical care.  A year ago, that's exactly what this blog would have been.  As I was trying to erode the mountain of laundry in the house today, I realized that my blog contains very little migraine content.  I guess because my migraines take up less of my life now.  It's amazing that I have a multi-faceted life now.  Not that I don't have daily reminders of my chronic life.  There are the handfuls of pills I swallow every day, the trips to Dallas to see Dr. Krusz, and constant avoidance of triggers (although I do walk on the wild side every now and then and eat Chinese or some other MSG-laden treat).  I have to watch weather reports to track barometric pressure, so I can take Diamox.  And, of course, there are the migraines that still land on me every week or so.  But other than that, I'm almost living a normal life.  I worked off this morning after 6 nights on, and I'm still up.  A year ago, it would have taken me two days in bed to recover from my work week.  I still get tired easily, and there's the ever-present migraine phantom pain.  Even when I don't hurt, I always feel where the pain will be.  And there are my work days.  Although I'm working 8 hour shifts, I still have to spend about 11 hours in bed when I get home.  I can't carry a cute little clutch purse, because how would I fit the pill bottles in it?  My fashion-forward leanings have taught me the Murphy's Law of purses:  If you sacrifice functionality for style and carry the cute bag, you will inevitably need the Reglan, Relpax, and Diamox you left on the kitchen table.  A nurse at work remarked, "I know who this bag belongs to, it's full of pill bottles!"  Yeah, you got me there. 

On the whole, I'm very lucky.  I'd like to think that this is the rest of my life.  Might be, might not.  But I'm lucky, and blessed to be where I am right now.  I know people in the migraine community read my blog and probably think, "This has nothing to do with my life."  I felt the same way when I came to the migraine community and listened with amazement to people who complained about having "a migraine every two months!"  That would have been, and still would be, a miracle for me.  I understand that there may be people out there thinking, "She doesn't have it so bad."  And I don't right now.  But I did.  I once went 6 months with only 4 pain-free days.  I hope I'm blessed the rest of my life.  If not, it won't be an untraveled road.  So, I apologize for the lack of migraine content.  Maybe I'll go to Shanghai Buffet soon, and then I'll have lots to talk about.

What happens to me

Tim and I were having a fight the other day (no surprise there, sometimes that's all we do), and he suggested that sometimes my migraines happened at "convenient" times for me.  He meant that I use them to get out of going to the ILs.  It really bothered me.  Every time I think he gets it, and truly understands and empathizes, he makes some stupid comment like this, and I know that he really doesn't understand.  And while I can understand ignorance in the masses, he lives with me.  But, I guess you can't understand, truly, until you've gone through it.

Migraine is truly a bizarre illness.  Not only do I get pain, but I get prodromal symptoms, a wide range of auras, and prodromal symptoms, too.  I guess when I do something, I do it right!  Before a migraine, when I'm in prodrome, I'll often yawn, get incredibly happy, or get incredibly touchy and easily angered.  Or I may cry for no reason.  I'll often flush blood red.  A lot of times, I'll do all of the above, or a combination.  And that's just to let me know that the light at the end of the tunnel is, in fact, a train.  Then comes the pain and the aura.  For most people, the idea of aura is seeing lights.  Yep, I do that.  I also have blurred vision.  And to just expand into all the senses, I'll have tinnitus, or I'll just flat-out hear things (books falling to the floor, doors slamming, or, the worst, radios playing in a distant room).  You have no idea how annoying it is to hear something but not be able to distinguish the details.  This can go on for hours.  And then, there's the smells.  I have olfactory aura, too.  I smell burning wood, or clean Pampers (better than dirty pampers, I suppose).  I have learned to live with most of it, but the indistinct radio is the worst!  And there's the pain.  Ah, yes, that.  Sometimes it's dull, sometimes it's agony I can't get away from, no matter what I do.  The pain too can go on for hours.  Or days.

But I've left out my "favorite" parts.  I have confusion and difficulty speaking.  I have difficulty walking.  That's part of the reason I don't practice law.  I cannot imagine being in front of a judge or jury and saying something that makes absolutely no sense.  Oh, I forgot to mention that sometimes I substitute words that don't make sense in the sentence.  I manage as a nurse pretty well, but sometimes the Dr. Seuss words pop out, and I apologize and explain that my migraines make me do it.

There is never a convenient time to experience these things.  It's not the old, "I have a headache" cliche.  Sometimes it's the worst thing I've ever lived through.  And even though I'm doing much better now, even if I'm pain-free I can still feel the headache there.  For non-migraineurs this may sound like absolute nonsense, but fellow sufferers know what I'm talking about.  It's strange, but it's like feeling a hole where a tooth once was.  The pain is gone, but there's a hole left.  I have an ever-present reminder of what my life is.

I want to hide

Tim accused me, jokingly, of wanting to sleep my life away.  (If he weren't home today, I'd have been in bed long ago, doing my best impression of the dead)>  And he's right.  I've had a migraine most of the weekend, and now I'm in postdrome.  And I'm having "brain events" as the incomparable Dr. K calls them.  "I'm afraid when the next one comes it might be a grande mal" is what I call them.  Tim wants to go out today.  Fair wish for a healthy man on a gorgeous spring day.  But I don't feel like it, and more than that, I'm afraid.  What if I go out to a nice restaurant, and the brain events finally morph into a full-blown seizure, and I'm humiliated in public.  Not that there's anything inherently embarrassing about a seizure, but the thought mortifies me.  Never mind that I've never had a full-blown seizure.  Never mind that I take enough Keppra to keep things under control (and today I had some extra just to make sure).  I am so much like my grandmother.  She has "fainting spells" as they used to be called.  Just quietly slumps to the floor with her seizures.  This brings her endless humiliation, even though it's not something she can help.  I never understood her fears of public seizures until I had an abnormal EEG.  Now I thoroughly understand.  It's a lovely day, and I'm stuck inside because I fear what might happen.  What if a seizure is on the way, and what if I don't have the nice quiet slump-to-the-floor quietly type?  What if I flop on the floor, urinate on myself, and chew my tongue?  Life would go on, but I don't think I could endure it. 

I hate that I have migraines.  I hate that my life is dominated by pain.  I hate that I never feel like going anywhere or doing anything.  I hate that my "normal" husband is bound by my limitations.  I wished out loud today that I was Buddhist, then I wouldn't have a God to be mad at.  He quipped, "So you'd want to do this life over again?"  Okay, he's got a point.  This life mostly sucks, and I surely don't want to do it again. 

I must get out of this line of thinking.  I do have things for which to be thankful.  I have a husband who tries to be as kind as possible about my quirks and pains and needs.  I have a cat who adores me, and loves to snuggle with me when I hurt.  I have a lovely job.  I have good friends; granted, most of them live in my computer, but I consider them friends nonetheless.  I find things to laugh about as often as I can (for instance, the patient in labor who practically refuses to remove her panties when she gets to the hospital.  I said, "You didn't get pregnant with them on, you're not going to get un-pregnant with them on, either."  Ahh, nursing, provider of laughs and sociological interests every day.

Another letdown migraine

I'm off today, and I hurt.  How does one deal with this?  If the one in question is me, the one chooses to pout and remain in a nightgown all day.  I will have to do laundry so I will have clean scrubs to wear when I go back to work tomorrow night.  It's not fair!  I want a fun day off.  Yesterday I had to sleep when I came in from work because I was just exhausted.  Sunday night 11-7 shift came in like a lamb and went out like a lion.  I so wish I could get on 3-11.  If I'd stayed in NICU I'd be on 3-11 right now, but I'd also be miserable as all heck, so I guess it's a fair trade.  It might be a better day if I'd had any sleep, but last night I was up and down several times.  The cat didn't help the situation.  I'm used to her licking my face while I'm asleep, but last night she bit my nose!  Not hard, but it definitely got my attention.  But I can't stay mad at her, she's my sweetie.  So, I'm a card-carrying member of the migraine society today, and I'm pouting.  But I believe, in true Southern Belle fashion, that tomorrow is another day. 

Strobe lights

Who ever invented these gems deserves to be staked to an anthill nude, smeared in honey, with a can of bug spray just out of reach. Many fire alarms in hospitals are equipped with strobe lights. For some reason, there is one in our breakroom (not in the hallway, mind you, where the likelihood of a deaf person seeing it is higher). Last night, it pulsed for an hour, without benefit of an actual fire alarm. I finally got on a chair and taped paper over it. I was already having my brain twitches before I got to work. After about five minutes of strobe hell--it was visible at the desk--I felt as though any minute I would fall on the floor and flop like a fish. And I have a damn migraine now.