Newly ReElectrified

My Butt Battery Is Operational

Got my new stimulator controller yesterday.  Yeah!!!  The rep tried to get my old one to work.  He punched a button there then another button two times and then an arrow key and a couple of more times.  Didn't work.  So he punched a button here two times and then annother button there once and then an arrow key once and a plus key a couple of times.  Ad infinitum.  Made me fidgety - I just wanted to grab the thing out of his hands and say "Stop it!!!  I already tried all this with the tech dude.  It's BROKEN!" but I didn't.  I let him go through every possible permutation three times.  He then told me "It's broken."  Yep. It was official. He had thoroughly examined it and now it was not only merely dead, it was really most sincerely dead - just like the Wicked Witch in the Wizard of Oz.

Apparently the only program they could salvage was the one that was active when the durn thing broke (or as I think of it  - the only program that was stored in my BUTT BATTERY).  Fortunately that was my favorite program (#2) which is now my favorite program (#1).  He added another five programs so I have six, two that are pulsating like I had them add last summer in Cleveland. I hope to have gained a couple more usable programs because there were a couple I barely ever used.  You know, you would think they could have a SIM card or a flash drive or something on the thing so you could transfer your programs, or even some type of graph where they could pencil in your programs but apparently that is a little bit too much fore thought.

Winny (I tell myself) quit getting snarky.  You basically got the thing for free.  Yes (I reply to myself because I'm kinda wacky this week) it was free and it works and count your blessings.  However (and I know now I'm really tired because generally I am not quite this bad) you would think that something that can cost $90,000 would have a backup of some sort rather than the last program you had stored in your BUTT BATTERY.  Go figure.   I'm sure whoever designed it said we need a backup and the stimulator people said pshaw - these NEVER break down, we get quality parts from overseas (there I go again - forgive me the mind is in backtalk mode; maybe I need to change the program in my BUTT BATTERY).

The Headache is still acting up.  I am thinking it will take a few days of the stimulator running constantly for The Headache to calm down.  Trying very hard not to medicate as I need to spend time this week at work - have too much to do and not enough brain power to accomplish it. Maybe I can get a brain power boost from my BUTT BATTERY or was that lost with my old controller??  Sigh....

Puppy Dogs and Flowers Thoughts

Trying to Be Positive In A Negative Day

Didn't get my controller today, the representative from St. Jude's received it today, but already had a full day of surgeries scheduled.  Will get it tomorrow at 1:00 at the A-Team's clinic.  Can't happen quick enough.

When you have a stimulator permanently "installed" or are just getting the temporary test implant for trial purposes, the medical device company generally has a representative (who may also be a doctor or nurse) that attends the operation.  They help with any technical issues during the operation, and also help test the device during surgery to make sure it is optimally placed.  They also help in recovery, going over how to use the controller device and what to expect, and do some intial programming of the device.  I understand why the rep couldn't work me in today, but it didn't stop me from being disappointed. 

Ai yi yi yi - the brain is very touchy tonight! I am trying very hard to stay positive and to stay out of an emergency room.  Today is a "bad" day per my headache cycle.  Hoping tomorrow will be better. I am going to drive myself to get my stimulator controller so I will not be able to medicate at all.  I  keep telling myself to calmly wait, it will be better tomorrow.  Stop the woebegone attitude brain, and settle your britches as my Grandma would say!

Thinking of flowers and puppy dogs and cute kittens with rainbow skies.  Wondering if I skip around the living room three times widdershins  I can wish The Headache away.  I think I am suffering from goofy brainitis tonight.  Maybe my mind will return when I get my electrical fix tomorrow!

The Head Doth Hurt

Me Without My Stimulator

A total unretouched unedited picture of me today.  The Headache rules. No electricity now for 24 hours.  My bosses, as always, were so nice when I called in sick today.  One even volunteered to drive me where ever I needed to go to pickup the new stimulator controller. 

Almost made me cry - well actually it did - but I'm very low at the moment.  I know its only temporary, but somehow it is like a flashback to a nightmare which was my two years prior to getting the stimulator installed.  It doesn't take much right now to tip me over the edge of tolerance.

Tonight I look like Hell.  In addition to the swelling of my left eye due to The Headache, the dilaudid I took is making The Hives more active and my entire face is swelling.  The indent around my right eye is where my face is swollen and touching my glasses.  Sorta like Mr. Peanut and his monicle!  And he carries a cane too - so maybe I'm am slowly metamorphosising [is that even a real word??] into Ms. Peanut!  Ewww - now I'm thinking Kafka and the book Metmorphosis!  Head - stop it!

The A-Team had no suggestions for pain, other than just keep medicating with dilaudid.  I'm leery to take more than one pill a day because I rebound so bad from it, but they said to take it every so many hours.  I'm thinking maybe tomorrow I will try and get an IV of solumedrol at the emergency room.  Depends on how bad it gets, but I don't think the dilaudid is going to cut it.  It reduces the pain a little bit and keeps it from going past my tolerance levels but with the puffiness going on even with antihistimines I am afraid to take a lot of it. 

My stimulator controller should be in by Fed Ex Monday, and the A-Team had no problem with me going there to get adjusted.   Yeah A-Team!  Dr. Hannibal Smith had actually done some research for St. Jude, so it was a happy coincidence for me. 

Monday can't come quick enough!  It's going to be a bad night tonight, and a very bad weekend too.  I'm definitely in Woe is Me land.  Note to self:  Suck it up, you can handle it!  Tomorrow is another day, and there is always Tara.

System Down

Missing my Electricity Fix

My stimulator controller is officially broken.  I can have the stimulator set at HIGH, which after a while causes pain from "over stimulation",or I can turn it off.  It is now off.  The Headache pain has returned in all its glory without the stimulator to fool my brain.  I'm trying to go without any medication tonight so I can go into work tomorrow.  Not sure if this will work as I'm not certain I can bear with the pain very well.

I missed work today.  I have been up and then back to drugged slumber most of the day.  I didn't even catch on to the time until a friend called and I happened to hear the phone ring.  It was almost five o'clock - where did the time go?  Strong medication is not always my friend.

My new stimulator controller won't be in Springfield until MONDAY.  That means it will be 4 days until I can get my headache back in submission.  Luckily the A-Team and Dr. Hannibal Smith are on the short list of people that St. Jude works with so the controller is going to be Fed-ex'd to them. 

I may call Dr. Smith and see if anyone there has a suggested strategy to get me through the next few days without a stimulator.  I hate to be just zonked out of my mind for four days - but if the alternative is unbearable pain, I'm going to zonk out!  I'm using antihistimines tonight to see if the pain can be controlled with out the heavy hitters, but it's like trying to put out a forest fire with a water pistol - not too effective.

Hoping everyone else has a pain free Friday and a good weekend!

Bad Headache No. 5 2010

Equipment Malfunction

Today has not been a very good day.  It is just a little over a month since my last Bad Headache Day, and I'm in the midst of another one.  The Headache has been rebellious and I am still not over it.  What is really bad is that I have had an equipment malfunction with my headache controlling occipital stimulator.  I tried most of the morning to get The Headache under control, finally resorting to very strong pain medication, and had to call in sick today.  I'm not very happy at all about that.

I don't change the settings on the stimulator unless my pain changes.  As pain increases I start changing up the programs.  I had not messed with it since coming back from Arizona.  When I tried to turn it on today, the LCD display that shows me which program I am using did not light up.  I could hear it beeping, and THEN it turned itself OFF, as in no occipital stimulator working at all.  Panic!!!  Disaster!!! Woe!!!  I messed with it, replacing batteries, shaking it a little, poking the buttons and finally my head buzzer started up again.  Whew!  The display never did light up.

I called St. Jude/ANS but by then The Headache was going into the horrific stage in spite of strong medication.  I couldn't find my rep's name so I just called their general customer service line, and they got me to research department.  Yeah!  My name and address were in their database!  I think they are going to ship me a new controller since the tech dude couldn't get it to work either.  I wonder if somehow being scanned at the airport has ruined it.  I worry that my current settings will be lost, and they work so well most of the time.

Later this evening (or technically yesterday evening)  I tried to turn down the stimulator, and it started beeping randomly and then turned itself off again.  Panic!!! Disaster!!! Woe!!!  It took almost an hour of poking buttons but I got it started again.  I guess I'm going to have to be "over" stimulated until I get a new controller, because by the time I got the occipital stimulator restarted I was in a world of hurt and I don't want to repeat that.  Even the right side of my head is ouchy now, wishing I was through with this episode already.

The Legs and The Belly are also being non-cooperative today.  Maybe its the fall equinox that is setting everything off.  The hives are worse even with the increased thyroid medication.  I was so hoping that the change in dosage would do the trick.  Sigh.  The problems all seem to feed off each other.  Have debated going to the ER, but just don't want to face the wait once I get there.  It's going to be a long week.  Patience, patience, patience.

On an unrelated subject - just so I'm not the totally self absorbed whiney person I want to be tonight - my sister brought over some homemade pickled okra.  I'm not an okra fan - it's just too slimey for me  - but her pickled okra was crisp and crunchy. She threw some jalepeno's in with the okra so it had a little kick to it.  Hoping there are some left by the time I can really eat something of substance.  My sister also makes some delicious home made ketchup and she does it all without a recipe.  I shall never be that type of cook - I'm so envious of her cooking skills!  I can only follow in her footsteps if she writes it down!