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!

Facial Pain And The Headache

Working on A Pain Action Plan

I was told when the occipital stimulator was installed that there could be some "crosstalk" between the occipital nerve and the trigeminal nerve, the supraorbital nerve and my facial nerves.  These nerves do not touch the occipital nerve network, they sorta interweave their nerve networks with the ends of the occipital nerve network.  The idea was that as the occipital nerve received stimulation it could somehow influence (chemically?, electrically?) the other nerves and problems I have with facial pain could be improved.

Now that I have not had my electricity fix for a couple of days I realize that the facial pain had been reduced.  The pain on the left side of my face at present is at the "let me rip the nerves out with a pair of pliers - it couldn't hurt worse" stage.  I'm also noticing my left eye is turning in at times - I'm sure this is a side effect from the burning nerve pain that bisects my entire face beginning at midline and extending back to my left ear and ending under my chin.  I think of those cliche German officers in the old WWII movies who have saber cut diagonally over their eyes and down their cheeks: I feel like there is a big saber cut running down my face too.   I guess it will go well with my Ms. Peanut monicle.

I am not feeling very with it today, but yesterday wasn't too bad - so one good day out of four! Yeah!!!  Trying to figure out pain management vs. driving tomorrow because I will need to go get the controller and reprogram my new one.  To medicate or not medicate - that is the question.  To drive or not to drive is the next decision.  Big Sigh.

I was looking up allodynia (which is an exaggerated pain response to normal stimulus) and stumbled upon a link from the National Institute of Health (NIH) to a site called PainAction.  I have signed up, and I'm going to see if I can formulate a pain control plan utilizing their tools.  There are four main sections:  Back Pain, Migraine Pain, Cancer Pain, and Neuropathic Pain.  I definitely have Neuropathic Pain, and I think some of the information under Migraine Pain will be of assistance with The Headache.  Too bad they don't have a section called Belly Pain!  Then it would be like the trifecta of pain websites! 

There is a pain tracking tool, and a section on self-help, and information on alternative therapies.  I have downloaded their pain management booklet, and am going to read up on chronic pain and how to manage it.  Hoping to get a few new tips that I can use in addition to my daily stretches and biofeedback.  I know I need to get back in physical therapy - it did help my endurance this summer as I was able to be on my feet longer without pain intervening.  Also the myofacial release decreased some of the sensitivity (allodynia) I have in the radiation fields where I received treatment, so physical therapy definitely is a winner in my world!!

The hives are dancing across my skin tonight, here, there, and everywhere.  They are bigger than they have been, and I fear I may be allergic to dilaudid, which I have been taking for The Headache when it is at its worst the last few days.  I will be extremely sorry if that is the case, as I will be almost completely out of pain medication options.   Plus I will be back to having the Big Lips.  My ears feel like they are swelling and are extremely itchy.  My digestion quit working earlier today, so The Belly is having its turn while all systems are out of operation.

I am having trouble sleeping between The Headache, The Belly, and The Hives.  The Legs are behaving which is a plus.  The weather has cooled to a nice fall temperature, and I have started the furnace because my mother (who will be 80 in another month or so) has a hard time staying warm.  I personally keep my bedroom at about 68 in the winter because since The Headache came along I can't sleep in a hot bedroom. 

Hoping this next week will be better than last.  I have things I need to get done at work, and did not plan to have a health crisis.  No repeats this next week.  Am predicting smoooooth sailing and a productive work week!  I want to be able to pull some long days, as I know exactly what I need to do - just getting it done is another matter.

Rasberry Ridge Bed And Breakfast

A Mind Vacation!

While trying to divert myself from The Headache and the lack of electricity in my occipital stimulator, I started thinking about a friend of mine from "back home" and her hard work towards fulfulling a dream.  I saw pictures of the mountain cabin Heather at War On Headaches stayed at and thought of my friend's log house!

Angie and her husband started building a log cabin/bed and breakfast a few years ago on a beautiful lot in Beaver Bay, Minnesota, but like all of us in our middle years bad health intervened.   This year they have picked up where they were forced to leave off, and are on road to finishing the Rasberry Ridge Bed and Breakfast with a target date of 2012.

The Silberbergers are going to great lengths to make sure their business is "green": using downed trees from a storm for building materials, using only earth friendly treatments for the wood, and starting their own organic garden so it will be well established before they start receiving visitors.  Not only is their desire to have minimal impact on their surroundings admirable, but for those of us who have chemical sensitivies it is great to find someone that is thinking of this BEFORE a structure is built and guests arrive.

I have been watching their progress all summer long on Facebook. They have the cutest grandkids who "helped" grandma and grandpa with the garden - and now they are far enough along to start a blog about the adventure of starting a B&B.  I know Angie from way way back (how far back I'm not saying!) and she always was a woman of determination and purpose, and watching her work towards her dream of an Inn in the wilderness has been inspiring...and a welcome diversion from The Headache!

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.