I Think I Still Have My Marbles

But They've Shifted Lately

Bad day yesterday, bad day today.  The Legs are not happy, and today The Headache was making itself know as I tried to work.  Sometimes I can tell when The Headache is not happy because I don't make sense.  I call people named Annie Angie, I can't remember words or just stop in the middle of a sentence, and I have to recheck work three or four times.  My typing and spelling goes downhill.  Hoping it's better the rest of the week.  I have recalibrated my head buzzer so should be good to go!

One of the guys at work thought I was better today because I wasn't using my cane to walk everywhere.  I just let him think that, but it actually was more weight I had to pick up to walk and it wasn't worth the effort.  I don't use the thing so I won't fall down, I use it so I can lean on it to stand or walk and have less pain in my nerves in my legs  - when the pain is maxing out I really don't see the purpose. 

I'll use my cane to walk with as I travel this week. I have some new muscle relaxers from Dr. SassyPants called Skelaxin which I am afraid to try until this weekend, so I guess I'll just have to tough it out this week because I have to drive.  I don't take anything that messes with judgement when I drive - The Headache is bad enough!

The epidural was a bust.  Not working for me.  Pretty sure that there will be no more in my future.  The benefit lasted for less than two days, and I think that was the anesthetic they use with the steroid.  Plexopathy must be a tough thing to treat. The physical therapists gave me more exercises to do since I won't be having anymore therapy for a few weeks, maybe more than a month since apparently summertime is their vacation time too.

Wishing I had some time for a real vacation where I could escape everything INCLUDING The Headache, The Belly, and The Legs.  They just seem to follow me around everywhere, the skunks. I guess my luxurious economy flight from Kansas City to Cleveland will be my only escape this summer.  I'm gonna try to skin out of doing the last trip to Cleveland in July, because I think I am going to have to be in Arizona at that time.

Interesting Theory About Migraine

Is Migraine a Disease or a Syndrome?

In the May 2010 issue of Neurological Sciences there is an interesting article entitled "Is Migraine A Disease?" by Cortelli, Pierangeli, and Montagna.  This article theorizes that migraines themselves are normal functions of the body to what the primitive brains of our ancestors saw as threats.  When these threats (or triggers) are experienced a cascade of chemical and neurological changes occur as the body attempts to negate the effects of the threat. 

One area directly stimulated by these responses is the hypothalamic region of the brain, which is closely related to the "Fight or flight" response.  In sensitive individuals if the threats/triggers are detected too frequently, the body starts to anticipate the threat, increasing the reaction and shortening the response time.  After many repetitions the condition becomes chronic, resulting in migraine as a malfunction, rather than migraine as a defense mechanism.

Cortelli, et.al., make the point that many of the common triggers for migraine (hunger, lack of sleep or too much sleep, alcohol consumption, light, noise, smell, and stress p. s30) could be seen as threats to brain function.  The brain desires to mitigate these threats, and when overwhelmed creates what Cortelli, et. al., describe as excessive allostatic load.  Allostasis is the body's active response to restore and maintain homeostasis (normal levels of stress hormones and energy), and allostatic overload results in continued heightened response to stimulus, often in excess to the threat offered.

"Four types of allostatic states leading to allostatic load have been identified
(1) repeated challenges,
(2) failure to habituate with repeated challenges,
(3) failure to shut off the response after the challenge is past, and
(4) failure to mount an adequate response." (p. s30)

The theory put forth is that migraine pain, nausea, photophobia, phonophobia, and sensitivity to odors is a normal defense mechanism of the brain.  The abnormal behavior in the migraineur's brain happens when allostatic load is increased frequently and the brain becomes habituated to it and starts to "short circuit".  Perhaps that is why many migraineurs find solace in a dark quiet room, lying very still - all threats are minimized and the overactive circuits are able to stop firing.

The authors speculate that "Migraine attack may not be considered a disease itself but in presence of a failure of the mechanisms controlling an excessive allostatic load, the repeating of migraine attacks may lead to a morbid state (chronic migraine)." Cortellis, et. al state that the migraine spectrum is a syndrome not a disease or dysfunction, and that more research needs to be done to find the exact mechanism that turns the primitive midbrain response into a chronic pain condition. (p. s30- s31).

In a post I did entitled "Does Anyone Really Know What Causes Migraines?"  I wrote "I wonder if what we call "migraine" is actually a catch all for several disparate diseases which all cause similar symptoms by different mechanisms. Perhaps that is why it is so difficult to manage, because there is no real "it"...rather migraine is a loose definition of a entire spectrum of disorders."  I guess I could modify this thought with this caveat "or a syndrome with varying causes masquerading as a disease".

My headache disorder, hemicrania continua, is mediated by the hypothalamus.  Perhaps my primitive midbrain/hindbrain is in constant alarm state, not able to turn itself off - that could explain the bone weary fatigue that goes with it.  I think I must have hit myself in the head too many times in past lives with a rock and am paying the penalty now.  Guess my primitive bonehead needs more space for the brain!  After all this scientific hoohah babble I have been writing, I think perhaps what brain I have is shriveled up like a raisin.

Road Warrior Mode

My Apologies to Mad Max

Getting into road warrior mode  - this is when you have everything arranged, ready to go, with a minimum of preparation, able to travel at the drop of a hat.  You know true road warriors when you travel - they are the folks who always have their coats and shoes off already at the TSA checkpoints at the airport.  They always know what time zone they are in, what the local weather is like, and where you can get the best barbque.  They speed through rental car kiosks, and navigate strange roads with impunity. My bosses are the true road warriors, I am still just a road warrior in training!

A looooong week last week, going to work today to print out materials for next week.  The new trainer is MARVELOUS!!!  I think I am going to be able to hand over duties to her without a worry, she just needs to learn some of the jargon that goes with hospital business offices and she's ready to roll on her own, at least for the modules she has seen trained!  I don't want her to get burned out traveling, because she has two school aged children and that is a worry when you are on the road - not the kids themselves but all the appointments they need to keep, and practices they need to go to, and activities they are in.  Modern moms tho, seem to have the organization thing down pat with cell phones, internet calendars, and texting.  Guess I'm just too old for that.

The Headache was bad a couple of days last week, but I managed to ice down the head at night to keep it in control with help from the stimulator.  Last year this couldn't have happened - The Headache would have been very bad just from walking to the training site from the car!  The Belly has been behaving admirably, maybe because I'm not feeding it too much.  The Legs are another thing entirely.  If it wasn't for The Cane, The Legs would not be making it.  Some sleepless nights, but I just can't do the amount of medication it takes to fix The Legs without messing with The Headache and The Brain, so I've just been toughing it mostly.  I think I can make it through this install which is a couple of more weeks.  I pray I can make it.

My co-workers have been giving me fits because I have a plain black cane.  They think I need a cane with bling.  I'm not too sure about that - I mostly wear dark colors when in road warrior mode, because they mix and match better and don't show dirt, and feel the black cane blends (as much as a cane can!).  I did find myself looking at some blingy canes including one with kitties all over it, but not sure if I could walk leaning on a cane full of kitty cat pictures.  I would be thinking "meow, meow, meow" everytime I leaned on it!

I did make sure I reserved a bottom floor room at the hotel.  I got stuck once on an install in a top story room when The Legs gave out on me a few years ago.  I couldn't get out of bed, let alone down the stairs.  Spent a day flat on my back and was able to walk (barely) the next day.  Not doing that again at a hotel without an elevator if I can help it! 

The backup hotel we were going to use is in a town that got hit by a tornado not long after we drove through it on our way home Friday, and their sewage treatment center is not working having been hit by the tornado also, so not sure if we are going to be able to use it.  Sigh.  Tornado season in the midwest, it certainly can be an adventure!

The clients are wonderful, easy to train, with lots of good questions.  I am hoping that this will be a great install, easy on them and easy on us.  Looking forward to go-live day in a week!  Now if I can just get The Legs to do what they are supposed to - driving myself next week and the week after because I have different hours than the rest of the team, so not sure how The Legs, The Headache, and The Belly are going to behave.  They don't like me to drive very much any more, and I actually used to love to drive long distances.  Sigh again.

Unless I take my work laptop with me, I won't be posting on the road, but I hope to be home Tuesday evening this week, and probably not home at all the following week.  Take care my blogging friends! Hoping for no pain and no fuss for all of us!

Pain is Knocking on My Noggin

Ice Pack Heaven

Did too much this week/weekend. Things had to be done, so I did them. I knew what could happen but sometimes you just do what is necessary then deal with the consequences if and when they come. Thank heavens for my handy dandy old fashioned ice pack! I am setting here typing with one balanced on my painful brain.

Tonight the ice is keeping pace with the pain. The stimulator is buzzing away but the pain has increased to the point it is not able to contain it. Tomorrow I pray that The Headache will calm down. The present exacerbation started on Thursday, and hopefully should be winding down tonight, still staying in that old three to four day cycle.

I have tons of work to do tomorrow, plus a GI doctor appointment, and then I have to leave at 5:30 a.m. Tuesday to travel to a client. I have no time for The Headache. It's a jealous thing, so I am sure as soon as it realizes I absolutely have no time for it, it will make itself known. I think I will be packing ice packs for next week's travel. Hotels always have an ice machine somewhere!

I haven't had time to go see my PCP to get some kind of rescue medication so I am hoping I am not due for another Bad Headache Day for a few weeks. Time is such a precious thing, and productive time is even more precious. Time keeps on slippin' into the future!!!

Tomorrow Was a Better Day

Crunching the Numbers

Today has been a better day.  The Headache is behaving itself, trying to spark back up with series of icepick headaches, but slowly dissipating as the day grows into night.  Was able to do my grocery shopping and even cook some low fat lasagna.  Woo Hoo!!!

I decided today to crunch some numbers, comparing where I am this year with the occipital stimulator to where I was last year at this time without the stimulator.  I get so discouraged when I have another "Bad Headache" day, I forget what it was like pre-stimulator.

When I use the term "Bad Headache" I mean that the constant headache I have reaches upwards to the stratosphere of pain, up to the point where I absolutely am unable to tolerate it without major intervention, either a doctor visit, rescue medication, or an ER or Urgent care visit.  The "Bad Headache" days are days when I cannot function at all.

I compared the period from January 1 to April 16th, last year (2009) to this year (2010).  There is a great deal of improvement, which makes me feel much better after my really sucky weekend.  I had 25 "Bad Headaches" in that period in 2009 and only 3 so far in 2010.  That is a huge decrease, with me going from having a completely disabling headache every four days to having one every 35 days.  My average pain levels are down considerably too!  Thank heavens for electricity. 

My Head Hurrts

But I'm going to Work Anyway

Bad night last night, bad day today. I have already worked over 40 hours this week, and I have eight hours left. Every time I try to increase my hours, increase my work load The Headache pays me back. But I'm determined to keep trying. I want my life back, unreasonable and as unlikely as it is to happen.

I have a CT of my pelvis, lower spine and abdomen scheduled for Monday morning. My PCP is sure that I have some kind of bone problem with my nerves, and since this has been going on for some time insists that I do this. He also wants to make sure I don't have metastasis in the bones. One more co-pay, one more exposure to radiation, one more time to see that I don't have cancer anymore. I'm just tired, too tired to worry any more.

Going to work in a few minutes, very bad headache today not responding to the stimulator, but am going to try to work through it. Using my benedryl phenergan mixture, but so far no help. Doesn't bode well for the weekend. Sigh.  Or probably this evening. Sigh.  Or this afternoon. Sigh.....

My left eye is piercing pain, and my thinker is not thunking correctly.  Bear trap in my brain has been tripped and has clamped on my synapses and won't let go!!  Good side effect from having The Belly pain and The Leg pain, I have lost six pounds in the last two weeks.  I am going to Woo Hoo for that!

Duty calls!  Heading down the highway!

Nagging Neuralgia

No Sleep For Me

Drove two hours to a client Tuesday evening, walked and walked and walked and stood and stood and stood for the next two days, and drove two hours back Thursday evening.  The new cane did help some with being able to continue walking and to help with the standing.  The pain is about the same standing or sitting so I guess the only difference is that my legs feel really weak so standing requires more effort.  Had a pretty good day at work today, although in quite a bit of pain I was productive.  This evening is another thing entirely.

The sciatic nerve, which was put to rest for a few days by the solumedrol shot I got on Monday, is awake.  It is REALLY really awake, burning down my right leg and curling around the bottom of my foot.  I can't sleep for the durn thing.  Regretting my decision to not get more narcotics at the moment.  Soma alone is not cutting the mustard with this level of pain.  Too much walking, too much driving, too much standing and now I'm paying the price.  The pudendal nerve is acting up too...at least The Headache and The Belly are behaving this evening/morning.

No travel scheduled for next week, thank heavens!  I have travel scheduled the week after that though, and travel scheduled at the end of May.  Will continue to try to tough it out, but I don't think I'm quite tough enough.

Once More Into The Fray

Valkyrie Resolve

Heading back to one of our clients tomorrow.  Determined to get this visit done even though I am having difficulty right now driving 30 miles to work and just walking and getting up from a chair.  Heard Wagner's Ride of the Valkyries on the radio on the ride home, so blasted it while I drove as it matched my mood.  Very good driving music, but I found I passed a lot of people on the interstate while playing it.  Gets me in true kick ass mode, although my "kick ass" is not as powerful as it once was - the ravages of age and illness.

Can't take medication for the leg pain and be professional, so just going to breathe deeply and get through it.  Biofeedback helps with this, at least for a short while. I have accepted the fact that I can't drive the two hours up and the two hours back, so a co-worker kindly is going to drive me up and back.  I just need to drive the 30 miles into town and back.  Hoping I can make it down the corridors OK, since the legs aren't working quite right.  Hoping I don't whimper like I'm doing tonight, very unprofessional and whiney, but sometimes whiney wimpy whimpering is what I need. 

Wondering if I got a cane if it would help, but I don't think it really would.  Both legs now are bad, which is what happens when I don't just lay around and rest like I've been told to.  Other nerve issues are getting worse with the pudendal nerve, which is nauseatingly painful.  AND The Belly decided to act up today.  Need to apply that Valkyrie mojo to my whole body - hiya ah ho!!!.

Mom is still feeling very ill;  I told her if she is still running a fever tomorrow evening (which would be the fourth day since she got sick) we are going to the ER, no argument.  Hoping I don't need to face the ultimatum, hoping she is better tomorrow.  She felt better today, actually sat and did her crossword puzzle for a while, but the fever is still there which concerns me.

Work is getting quotes from other health insurers to see if they can get a more competitive rate.  The health insurers needed a health history for the last 10 years to help rate the group.  It was awful; I had to make a spreadsheet to hold all the explanations/doctors/dates they needed.  Depression was one I didn't have to check, but I am going to have to start calling myself mentally impaired because I'm NOT depressed.  After looking at that spreadsheet I thought - what am I doing still working??  Stubborn stupid valkyrie mojo! With me in the group I can't see them getting a good rate - makes me feel so responsible in a bad way. 

This is at least the fourth year in a row with double digit percentage increases from Anthem Blue Cross Blue Shield - probably over a 100% total increase in cost if you take what they paid eight years ago when I started there to what they will pay if they renew, plus the benefits are so much worse.  Anthem is definitely a for-profit insurance company, not friendly at all for small businesses like I work for.

The Color of Pain

It has a "flavor" too

Pain has become a too familiar part of my life the last few years. For me pain has aspects that hard hard to define, but distinct. I feel almost like an officiando of pain, just like some people know all about wine and all the subtle nuances and sub-notes of the taste and appearance.

Sometimes pain is warm fuzzy and familiar with a hint of vanilla. Sometimes it is jagged sharp bitter as alum and just plain scary. It's like a stinky old stiff sock that needs to be washed, or the all encompasing embrass of an itchy robe. The red wash of pain turns white hot when it goes into the stratosphere of pain, and the cold blue that my fingers get as the pain heads to the worst.

Today has been an red rimmed orange day, merging into pink, with purple overtones. It's sandpaper on toothpicks with a soldering iron searing into my legs. Hot cinnamon vinagrette flavors it all, making my skin hurt. Ready to rest and get to tomorrow already.

Have a bone density scan tomorrow, first since radiation therapy six years ago. Not sure what will show up, I'm guessing its a DEXA scan - its supposed to be of the spine and hips. I've shrunk in the last few years at least an inch; I'm afraid if I shrink too much I won't be able to sit in the big person chairs at work!!

Wylie Coyote Kind of Day

I Keep Trying

One of those days, one of those weeks.  Head hammering like an Acme Anvil dropped on it, nerves on fire but pain medication makes the head worse, so will try not to take any for awhile. I'm getting used to hurting so I just need to toughen up some.  Accomplished a lot today, but am paying for it this evening.   Not sure somedays why I even make the effort to do anything, because someway somehow it backfires, just like when Wylie Coyote tries a new surefire way to catch the Roadrunner. 

I worked late today getting my new office space somewhat in order.  They just moved my stuff in to the former occupant's desk(s) and only removed the former occupant's stuff that was ON the desk(s) or on the walls.  My stuff, a lot from the recent implementation was sorta strewn all over the place.  I cleaned out drawers nicely and neatly and put the stuff in my former office holder's new office.  I even assembled one of those wire Pendaflex file hangers for her drawers (she is out of office this week) which for me is going above and beyond the call of duty - I hate those things with a passion.  I just didn't want her to have to come back to the office and then do all that too in addition to putting things away.  She's been really good natured about the move since she works from home mostly, but she got put back in a way worse space, although it is much quieter and out of the way.  I have partially rearranged my new space so it is more conducive to how I work, and may stay late tomorrow (I guess today) to hang pictures and arrange the heaviest thing there - a big wooden desk.

I now have a good sized pile of shredding to put in the shred box, I keep everything from an implementation until about a month afterwards to double check that I have covered everything that needed done, so this can be a pretty good sized pile of paper at the end.  We start the next implementation training schedule towards the end of April.  Hoping my wacky leg nerves will be better by then.  At least there is a clear spot or two on that big desk.  I need more cabling to safely connect my PC to the LAN, right now there is cable accross the floor.  I did find enough telephone extension wiring to put the phone safely where I wanted it.

Trying to eat small meals more often at work, but keeping anything down is a struggle.  Wasn't successful yesterday, but today was a little better. Will keep working on it to see if it makes a difference.

Not much going on in my world, just trying to work.  My nephew-in-law got back from China, and promptly had to go to the hospital as he brought back some kind of Chinese bronchitis.  He thought he caught it on the 13 hour plane trip home.  No matter how completely the air is cleansed in an airplane, it is impossible to avoid exposure when people are hacking, sneezing, coughing, or vomiting in your general vicinity.   Probably next fall's flu virus just being premiered before the prevaling winds bring it over from Asia to America.  He found the people very kind and gracious, just wished he hadn't caught whatever bug it is he has.

PS - The Headache is not good this evening, so just ignore the misspellings and typos. The hands and the brain are not coordinating..

One Day's Difference

Snow Now Gone!

Really lovely weather today, can't hardly believe that the snowstorm of last weekend happened.  Left for work with snow still on the ground, covering the yard, ice still showering down from the trees.  Came back from work this evening, and only a few little bits of snow were left.  The robins are happy, and we had two meadowlarks that were very bedraggled and sad about the snow so I'm hoping they are back to nesting now.  Looks like all the leaves in the yard tried to wash up on my back porch/patio though.

At work, got a different room and desk this week since apparently last week while I worked from home it was "Moving week" at the office!  I laugh everytime it happens - we play musical desks about every six to eight months where I work.  I really don't care where I sit (except next to the lunch room when I am nauseous is not so great) but I got moved out of the office of many lights to a nice warm room (actually hot in the summer) with fewer flourescents and some soft nice natural light.  My only request this time was that I NOT be moved to the super cold conference room area.  You can practically see your breath in there, and I think I would have to wear a winter coat all year long.  I think this one will be nice and toasty.  Yeah!  At least until next moving week, eh??

The new employee the trainer trainee is EXCELLENT!  I am holding my breath that she continues to like the company and the work.  She is bright, a quick learner, good sense of humor, and a great communicator.  Woo Hoo!  She has two school age boys, so I am hoping that the travel part of the job won't be too much for her.  I have such a great crew to work with: the programmers are fantastic, and the clients are great [even when I get client fatigue from being there too long], and now finally someone trainable with the ability to do the job!  Life is good at work, if I can just get the body to cooperate with the brain!

Not a great day for me pain wise, but am just sucking it up and moving forward.  Resting last weekend helped, but still very painful for me - especially driving. Can't take the meds and drive to work, so nothing until I get ready to go to bed. The Soma takes away a lot of the nerve pain, but I am left with pretty weak legs, so not too functional lately. Ah well, maybe tomorrow all will be normal!  After all, look what happened to the snow in one day!

Fire Tender

Furnace Woes

Today (really early early this AM) my furnace died.  It is only 10 years old, and the "cool air intake blower motor" decided to quit.  I will call the heating and cooling dudes tomorrow morning and get them to come out, order parts, and fix it.  If it had only waited a few more weeks, I might not have needed the repair until next fall.  Big Sigh.

Tonight I am tending a fire in my fireplace insert (a wood stove inserted into the fireplace space) and now have the house temperature almost up to eighty degrees.  My mother, being elderly, gets cold very easily and with The Headache I also cannot tolerate cool temperatures, so we generally keep the house at a tropical 82 degrees all year long.  In the summertime with high humidity I drop the temperature lower with air conditioning because my mother has difficulty breathing, but otherwise I live in a pretty warm house.  I am glad so far we have been able to afford the luxury of warmth.  The people who owned this house before me heated only with wood using the fireplace insert (it has temperature contolled blowers which helped keep the temp even throughout the house) but my mom has allergy issues with wood smoke, so I only use it on the coldest nights or in case of emergencies like now.

The Headache and The Belly are not happy with me lifting good sized logs to put them on the fire.  Neither problem likes the movement or the exercise I guess.  My nerve pain in the pelvic region is on overdrive and the nerve pain in my feet is excruciating.  Not sure if this is aggravated by the heavy lifting or if it just the result of being poked and prodded last week during my cancer checkup, but my legs are very weak too which happens when the nerve pain gets bad.

I'm sorta excited about work next week because my sweet boss hired another trainer to replace the one who only lasted a couple of weeks! The Big Guy hit one out of the ballpark this time I hope! I shouldn't have to travel right away, and maybe can get her oriented to the job better than the last gal who only lasted a couple of weeks.  I think I work for the best company in the universe!  This new lady has tons of experience in programming and software support, just no medical business experience, which is fine.  I can train her in medical office terminology and business practices, there just is no way (like with the last gal) to train someone in the mindset of thinking like a computer works!!  I'm so glad she is on board, praying that she likes the job and likes to travel.  Woo Hoo!!!

Bad Headache No. 2 2010

Storms Bring Pain

Not sure if I have been doing too much, or if it is just the enormous thunderstorms that have been moving in all day, but I have been down for the count since about 3 AM this morning.

I'm too sick to drive, but not in enough pain to call an ambulance. The pain has migrated from my left side and has now included the right side of my head. This is first time its done that this year.

I have the stimulator on high, and have taken all the phenergan and benedryl I think is wise. I have percocet I can take, but it doesn't do a thing for the head pain so there really isn't any reason to take it unless I get truly desparate. Foolishly I flushed away my rescue Dilaudid last fall thinking I would never need it again.

My blood pressure is very very high, and getting higher. Doesn't bode well for me - a sign The Headache is gaining the upper hand. I'm tired, even though the benedryl/phenergan has had me napping throughout the day. Typical of The Headache, it can't be slept off like I used to be able to do with migraines.

Hoping if the storm system passes over me without a tornado snatching me up The Headache will pass too. Tornados were spotted about thirty miles northeast of here so I think they will miss us this time.  Ready for The Headache roller coaster ride to be over tonight.

Thinking of tornados, my brother and his (then) five year old son are tornado survivors. They were residents of the "Lucky Lady" trailer park  several years ago when it got hit directly by a tornado. It picked my brother's 80 foot trailer home up, turned it upside down, shoved a tree through the bedroom and down the hallway and desposited it on top of another trailer. I told him that was the new extreme sport, tornado surfing in a house trailer. You know God has plans for you when He picks you up in a tornado, says "Uh uh, its not your time" and puts you back down in an area of total devastation and you and your child only have a few scratches. Needless to say, they both get nervous when the weather turns bad.

Family and Illness

My Mom

I have a circumstance in dealing with family and illness that, while not unique, is not one that is discussed very often.  I am the primary care giver for my eighty year old mother.  When I am not well, this causes an extra layer of concern for me.

When you help care for an older adult, there are things you need to be aware of.  Unlike children, they will not become more independent with time - instead they will become more dependent.  Unlike children, they are aware of the consequences of their caregiver becoming ill, and part of the consequences may be loss of what independence they have, and possible institutionalization.  Unlike children, their comprehension may be clouded due to age and illness, which increases anxiety and possible inability to cope with rapidly changing events.

My mother has had a series of small strokes, and has had cancer in the last five years.  She does not have a sense of hunger, and has to be reminded to eat.  She has cataracts and diminished vision.  She has advanced COPD and limited ability to do physical effort.  Mom can still cook, clean a little bit, maintain her own personal hygiene, manage her medication, and do her laundry.  My father died in 1989, so she does not have the support of a husband.  She enjoys doing crossword puzzles each day, and we have been working on a 3000 piece jigsaw puzzle for quite a while.  She worries about things I don't worry about, or even guess she worries about, and has some trouble with short term memory.  She needs help to dial a phone, even to call 911.  But she has many more years of living in her home/our home ahead of her, and enjoying the companionship we have, and with our dog Augie (well, really her dog Augie!).

I have brothers and a sister that help care for Mom when I am on the road or in the hospital, and that is a great blessing for me and my mother. She gets scared when I am ill, and I try to keep that kind of stress from her when at all possible.  Sometimes, as when I called the ambulance a couple of weekends ago, it is not possible but I try to keep it in the background as much as I can.  Thus the blog - she doesn't read a lot of internet articles, and she doesn't use a computer, so this is a way to vent without worrying her.  Sometimes my own stress spills over and that upsets her so I try to keep things as calm as possible in my home environment.

I don't have children or a husband to help me when I am ill.  My siblings try to help, but all of them have their own problems in their own lives, so I try not to bother them if I can avoid it.  I try to be independent, but I am sure if you ask other family members they might not see it that way.  If things don't get done at home, there is only me to do them.  I wish I had more energy, and I wish I was more able to keep up the house in the manner I was raised to do it.  There is a blessing that Mom has cataracts so she can't see the cobwebs in the corners of the closets or the dust bunnies under the couch!  I concentrate on keeping the floors and counters clean and the bathrooms decent.

Because Mom feels anxious when I am sick, she wants me to stay at home with her all the time and not be sick.  When I gently remind her we couldn't afford her medication or food if I didn't work, she seems to understand but we have this conversation over and over again.  I love my Mom, and I hate that me being ill makes her upset, and makes her anxious.  Its enough that it makes me sick, without harming her.

I have friends that say they would send their parents off to a nursing home.  As someone who has spent time around elderly relatives in nursing homes, these institutions have their place, but they are not a warehouse for elderly persons who have the ability to care for themselves with some assistance. The institutionalization of the individual that is inevitable in that environment is harmful to someone that has good cognition. I feel strongly that family should be the first resource for elder care, just as it was near the turn of the last century.  I just wish I was better able to care for my mother.

Brain Fog

The Headache Doth Persist

Last weekend I woke The Headache from its slumber.  I have not been able to put it back to sleep yet.  The occipital stimulator helps, but nothing really works completely when The Headache starts to escalate.  I'm trying a little stimulator vacation this evening as my head was getting over stimulated (you feel "sore" in the stimulation area especially after hours of running it at high levels; the only way I know to make it better is to turn the stimulator down where you barely feel it running).

I hope The Headache stays at its present level while I keep the stimulator turned down.  I'm at about an eight out of ten on my pain scale; I can handle it up to a nine.  My brain is fuzzy and foggy right now, not thinking right so I hope I spell everything correctly and include all the words I intend to write!

I'm not taking any pain medication at all this evening, even though The Belly is protesting.  I have taken anti-nausea medication and antihistamines today, trying to manage the feelings of sea sickness, vertigo, and pain with non-narcotic solutions.  I don't know how people who take narcotics daily for severe headaches do it.  The headache gets really bad really quick and the narcotics don't really touch it and for me they seem to make it worse.  Maybe its just the hemicrania continua, it's a bit of a strange duck in the chronic headache world...or maybe I'm just excessively sensitive to strong pain killers...

A recent article in About.com on hemicrania continua by Betsy Lee-Frye stated that

Hemicrania continua can be one of the most debilitating headache types experienced by migraine sufferers. The cause is unknown...

I believe the writer misspoke about it being experienced by migraine sufferers, but maybe she meant that migraine sufferers can get HC.  Hemicrania continua used to classified as a TAC (Trigimenal Autonomic Cephalgias) along with cluster headaches, not as a migraine disorder, and now is considered a primary headache disorder just like migraine and cluster headaches are.  When I am in an emergency room and I describe HC for the nurses and doctors I describe it as a cross between a migraine and a cluster headache.  The pain is more towards the cluster spectrum of pain (you can't sit still, you writhe in pain) and the swelling of the eye and runny nose are similar to cluster headaches, but the photophobia, and nausea, and unilateral presentation are more like migraines.  For me, the cyclic nature of The Headache also makes one think of cluster headaches rather than migraines.

The article also states that exercise and alcohol consumption can make hemicrania worse, which has also been my experience.  I have had one drank, a white wine spritzer, since The Headache began and I have not repeated any exposure to alcohol since.  That night was not a pleasant experience and I ended up in an ER two days later - a very expensive glass of wine.

Ms. Lee-Frye also states there has been some evidence of a link between HC and brain stem lesions from a stroke.  Nothing has shown up in any of the CT's or MRI's I have had, but I can't do the contrast so I suppose something could have been missed.  I do think I would have known if I had had a stroke when this all started, and I am not sure what difference it would make if I did find some evidence of a lesion - there would be nothing they could do for it anyway.

The old "bad pain" at 2 AM business is starting up again, making it difficult to rest.  I'm just being a whiney butt tonight.  The stimulator has gotten me used to a relatively painfree life, at least compared to the last two years.  I am just going to have to take some bad with the good, and know that life is better than it was, even if The Headache is not behaving itself.

Going to pack my head in ice, and put heating pads on my neck and shoulders and see if I can get my pain and blood pressure back under control.  I'll be so elegant, with my blue ice pack on my head and two heating pads draped on my back. 

The Headache Persists

Pain Racked Head

Since receiving the injection of decadron last weekend The Headache had faded into the background at its normal levels of pain until today.  I only worked a few hours Wednesday and Thursday but needed to be at a meeting this AM at work, so came in early and stayed for the entire day.  This evening The Headache is trying to escape again.  I have been taking percocet for The Belly pain, and perhaps that is aggravating The Headache, hard to tell at this point, or maybe the steroid is starting to wear off.

I have at least another two weeks of travel to the client, will try and rest to see if I can get it done.  So far I have accumulated over $500 in ER co-pays just trying to be well enough to keep working in the last two months.  Doesn't seem practical or logical to keep doing this - but if I don't I can't keep working.  Big Sigh..

I have a claw of pain ripping at my head - trying hard to keep the stimulator programs varied to stop the progression.  It's helping, but it's not keeping me ahead of the pain with the increased working hours and activity.

One of the symptoms of hemicrania continua is that for a lot of us the pain gets worse with exercise.  For me that can be just simply driving my car, buying groceries, sweeping the floor, or walking up and down the hallways at a client's hospital.  The longer hours I've been working coupled with more physical activity has The Headache stirred up.  I have read with envy accounts of  people who are able to increase their natural endorphins by exercise.  I hoped that the stimulator would control the pain enough that I could get back to a more active lifestyle, but it ain't happenin'. 

Tired but not able to sleep tonight.  Ready for a lovely day tomorrow and a smooth pain free brain.  I am going to go to bed with positive thoughts to populate my dreams.  I'm breaking out with small hives all over, probably from the percocet .  I guess I will have to discontinue percocet and rechallenge to make sure that is why I am hiving.  Sigh again.

Bad Headache No. 1 2010

Ambulance Ride to The ER

Haven't been blogging much the last few weeks as I have been traveling for work and have been very tired.  It's going to be a year for travel if I manage to stay employed.  After last weekend, I'm not sure what I should be doing.

I had a very tiring and stressful week - not bad stress, just stress of trying to accomplish my mission for work in an environment where the client's decisions impact my ability to succeed.  I am very goal oriented, and last week fell back to my old habit of doing "what it takes" to get the job done, regardless of the consequences to my health.  I did it again this week too, am going to have to give myself a pep talk about self care to bring myself back to practical goals that don't send me to the hospital.

Friday The Headache was trying to make a comeback.  I had worked long long days for the last 10 days before, and The Headache had had enough!  I drove the two hours home that night just hoping I could make it there without having to pull over at a nearby hospital.  I was difinitely bumming.  I got home, and Saturday cleaned house, did my grocery shopping, cooked dinner after not sleeping at all Friday night.  The Headache seemed to go back to a simmer, but Sunday it was blazing back to full blast.  Worst headache I had had in months.  I had forgotten how bad it can get.

I had been having pain like this every three to four days last year, so I guess one day so far this year is a big big improvement (thank you occipital stimulator!!).  I had not realized how bad The Headache was getting and by the time I knew I was in deep doo doo, I was in the shape where I could not drive.  I called an ambulance, and once I got to the nearest emergency room I was in so much pain from The Headache that all I could do was shake from the pain.  I was basically incoherent, so it was a good thing I had not tried to drive.

The emergency room PA (physician's assistant) was so nice, he asked what I normally took and I managed to stammer out the list of meds - fentanyl or dilaudid (my preference fentanyl because I'm not knocked out for hours) benedryl, solumedrol, and phenergan.  Apparently phenergan is not supposed to be administered IV anymore (I never had an issue with it but I guess it's not to be given that way just IM injections) so I got compazine instead, which makes me twitchy but does stop the nausea.  Instead of solumedrol, I got decadron (dexamethasone) which is a much harsher steroid but lasts much longer, and I got benedryl and fentanyl.  It took a couple of hours but I got better, with The Headache going from a 9.9 to a 7 on my pain scale.   My sister was able to come and pick me up so I was able to get back home.

I was still working at the client's site so the next morning I struggled to get ready and pack and head out.  The decadron took my voice away - steroids do that to me.  I go from a tinny Minnie Mouse voice to a baritone Miley Cyrus voice.  Not sure why, just another example of why steroids are not a very good thing to have to take!!  I stayed at the clients until yesterady evening, and have worked a little from home today and will go back to work tomorrow.

It may be the steroids, or maybe just the shock of the intense pain, but I am very shakey today.  My legs are wobbly, and I am having a lot of trouble concentrating.  The Belly is acting up, but I know from past experience steroids mess with my pancreas so I'm guessing that is why.

I am supposed to go to the client's again next week.  Sigh.  Not sure if I am physically up to it.  You know, I found this job seven years ago and it has been a dream job for me.  Love the work, love the people, love the clients.  I'm not ready to let it go, but I'm not sure if I can figure out a way to accomplish what I need to do.   The new trainer that was hired has already left the company.  I can honestly say I didn't scare her off, as I have been at the client's all this week, but I am very discouraged because I wanted to have someone I could hand responsibilities off to so if I needed to fade off the job I wouldn't feel I left my bosses in the lurch. (Wow, was that a run on sentence or what??  I'm blaming the steroids!)

The Headache is being contrary this evening probably because I have not rested it this week either.  I am going to take a pain pill for The Belly (I haven't been taking any because they seem to aggravate The Headache) and go to sleep.  Hoping you, my friends, have a pain free night!

Traveling Prepared

They Have Fair Warning

Getting ready to travel to a client's again. Will be gone until the end of the week if all goes well. Thinking of taking my own Do Not Disturb sign after my last experience at this hotel. NO TOWELS...Read the fine print....NO TOWELS!

Feeling a little better today, but still not sleeping right, or eating right. The pain on eating is getting more severe, although the nausea is cutting back a bit. The Belly may behave during the next few days, but I have no confidence that it will.

The Headache has been trying to escape again from its electronic bonds. My head got "overstimulated" and I had to turn my magic box of zappiness down and then The Headache decided to try again. Tired of this mess, but I guess this is my lot in life. I am grateful I have this much control over it - last year at this time I had none.

After having the hives with the percocet I have determined that perhaps pain killers are just not for me. I will give it a go again when I feel I absolutely have to take something or end up in the ER.

Kryptonite Belly

Wish I was Invulnerable

My sister invited my brother and I over to watch the Super Bowl on their very nice, very large flat screen TV. I brought chips and dip and a fruit platter, and she made low fat hot deli sandwiches and we had a nice light supper also.

I ate about three inches of my sandwich, and some of the fruit, and a tablespoon of the layered dip that used no-fat sour cream. I enjoyed watching the Super Bowl, but my nausea and pain just kept increasing.

We left after the Super Bowl was finished, and I came home, where the pain and nausea increased. I took phenergan trying to stop nausea, and after about another half hour I took a percocet for pain.

Unfortunately, I started breaking out in small hives after taking the percocet. I can't tell if I'm allergic to pain medication, or just determined to have hives regardless. Then the nausea started ramping up, and I threw up everything I had eaten this evening (which wasn't much). Probably also threw up the pain medication. Three AM and still vomiting. Not sure what tomorrow will bring.

Going to try to go to sleep, praying that I can quit throwing up. Not sure what to do about it. Getting really shaky and cold feeling today, would like to have some real energy. The pain is increasing, but won't take more medication since I'm not sure how much stayed with me.

Does Anyone Really Know What Causes Migraines?

Your Guess is as Good as Mine

Heather at War On Headaches stated in a comment to a recent post (MRI Results)

I'm beginning to think that headache pain is simply headache pain, and there may not be an explanation. Don't get me wrong - I'm not giving up on trying to get better; I'm just thinking that trying to find the source may be a wild goose chase!

This got me to thinking, and since my brain is on permanent circuit overload status that can be a dangerous thing. What would I find in PubMed if I did a simple search on 'causes of migraine headache'? Surely I would find some consensus, especially with the plethora of imaging techniques and genetic tests and new drug studies. Instead of consensus, I found no unified field theory of causation, and much disagreement on disease mechanism.

I only went through a few pages (sorted by most recent relevant contributions to journals) and came up with a short list. After review I wonder if what we call "migraine" is actually a catch all for several disparate diseases which all cause similar symptoms by different mechanisms. Perhaps that is why it is so difficult to manage, because there is no real "it"...rather migraine is a loose definition of a entire spectrum of disorders

A couple of surprises were a link to a specific pesticide, association with high levels of air pollution, and mitochondrial damage associated with medication, including acetaminophen. I had migraines BEFORE acetaminophen was ever marketed, so I definitely know in my case there is no correlation to that one. Here's the list I compiled:

1. Patent foramen ovale
2. Metabolic Syndrome
3. Obesity & dysfunction in the orexins pathways
4. Changes in extracellular sodium and potassium levels in spinal fluid and the brain
5. Air pollution
6. Dilation of dural vessels
7. Exaggerated or abnormal neurotransmitter responses to normal cyclic changes in the ovarian hormones
8. vasodilatation provoked by calcitonin gene-related peptide
9. Neurogenic inflammation of meningeal vessels provoked by peptides released from trigeminal sensory neurons
10. Pituitary adenylate cyclase activating peptide-38 (PACAP38)
11. Mutations in ion channels causing imbalance in the activity of excitatory and inhibitory neurons
12. Dysfunctions in the neuronal networks in the brain stem (especially in the serotoninergic nuclei) or the hypothalamus (SCN)
13. Medication induced mitochondrial damage; offending medications include acetaminophen and psychotropic drugs
14. Cortical activation, which disinhibits craniovascular sensation through the nucleus raphe magnus (NRM)
15. Inflammation of the meninges, particularly the dural membranes that surround the brain
16. Mutations of the voltage-gated K+channels of the K(V)7 (KCNQ) family
17. Pesticide Antracol Combi WP 76
18. Cytokine and immune system modifications
19. Nitric oxide and the transcription factor nuclear factor-kappaB (NF-kappaB)
20. 5-HT(1F) receptors and/or 5-HT(7) receptors

See what happens when I take pain medication and I can't sleep? I come up with simplistic suppositions of semi-scientific speculation and can't stop the alliteration bandwagon for the life of me!!!

On a personal note, no nausea today so far, so ate a small but real supper (dinner for you city folk). The Belly protested with pain, so I took a Percocet. The pain decreased slightly and I don't feel drugged at all AND so far no hives!! Woohoo! My PCP said this is a low dose, so maybe this is something I will be able to take and still be able to work.

I worked today for about six hours helping look at conversion data for a client, and working on testing some programs. It was very difficult for me as I have no energy and am very very shaky feeling (this was way before I took the Percocet). My boss announced yesterday they have hired someone as a trainer, bless his sweet heart!! I am so relieved; although I have communicated with my bosses about my illness, I have not been honest with them or myself about how difficult it is for me to work. After the last couple of weeks have been afraid that I may not be able to continue and they would not have anyone to do what I have been doing, so I am relieved they have found someone!

Working is almost more than I can do, and the last two weeks have made this even more clear. I love the work I do and the people I work with and the company I work for. I am more fulfilled at this job than any I have had in years. No matter how difficult it is to go to work, I just can't envision my life with out this, but I want to be fair to my bosses too. They have a right to a worker who can actually get through a day without getting so ill she can't continue. I am trying my best to get better, but its not happening fast enough for me.

My mother and family are wanting me to quit and apply for disability. In all practicality, even if I wanted to apply for disability, there is no way for me to survive financially while I wait 18 months to two years for a disability determination hearing. In the U.S.A. [note: opinion not fact] you have a 99.9% chance you will be denied disability on initial application. I wonder what this administrative intensive process costs us as taxpayers compared to the miniscule savings it initiates by discouraging fraudulent claims? A false economy that was implemented by Ronald Reagan for political mileage in the 1980's. Time for this regulating rule to be revisited! And at the same time, make disabled citizens immediately available for Medicare, no 18 month waiting period.