Tuesday, April 27, 2010

Traveling Again

On the road tomorrow, getting all my stuff together today.  Going to be a looooong week.  Sigh.  Extremely tired, but I got done today what needed to be done, so it's a good kind of tired.

Hoping for happy clients and pain free days ahead, but I know at least I can make the clients happy for a while!!  Hoping you all have a pain free week and are energized by the weekend!

Sunday, April 25, 2010

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!!!

Too Tired

Maybe I'll Sleep Soon

Home after travelling this week, next week will be gone almost all week.  Not sure how I will fare, the next three weeks look like travel, stand, stand, walk, stand, travel.  The Headache is trying to act up again tonight, and I can't sleep.  Hoping to short circuit The Headache soon.

I'm very tired, and this was just two days this week of travel/training. I guess the next few weeks I will just play it by ear and see how I do.  The Legs are not working very well this evening, am glad this week I had a cane.  Maybe I need to get a Hoveround and I would be zipping around and doing everything!!!  Truthfully I'm not ready for that step - will keep on trucking as long as I can, without the aid of an electric chair.  However I love that jazzy Hoveround tune!!!

Tuesday, April 20, 2010

Ruler of all Things Project

Wearing My Crown Proudly

Put on my Project Manager crown this week, whipping up a couple of project plans so we can coordinate with a project partner.  Feel like I'm in one of those old Imperial Margarine ads -duh duh duh daaaa - fit for a project manager/King!   Formal project management, which I have done in the past, is really not needed in a firm as small as the one I work for, but when working with other firms (especially ones that are being utlized by a mutual client for project management) I can brush off the old software and pull a project together.  I just pray they don't want me to actually update the durn things.

On the road again this week, and probably all of next week. Big Sigh. All of a sudden way too many things to get done in the time it takes to do them.  And of course deadlines changing daily, sometimes more than once a day, with all dependent deadlines shifting and changing too!  Keeps life interesting that's for sure!  The new trainer is learning so quickly it is scary - in a good way.  Can't believe our luck in hiring her!

I turned in a request for unpaid time off this week for the CT scan, and my boss, The Big Guy, came over and said quit filling these out, don't worry about it - you're covered.  Now coming from an accounting background and having been over payroll and benefits before, I appreciate this - but I'll keep filling time off requests because I like to keep my personal ledger straight.  Doing the requests makes it easier to be honest with myself about how much time I'm missing.

Renee at Gypsy Shyaluna has a great post about chronic illness and marriage/relationships.  She has some great tips and practical advice whether you are in an active relationship at the moment or not.  Her post concerning the path she took to getting a diagnosis of Chiari Malformation and the treatment for it is very interesting also!

Renee's post reminded me of a presentation about the emotional aspects of dealing with chronic illness.  This powerpoint was developed for the myositis.org website by Craig Travis, PhD, of Mount Carmel Famly Medicine (Director of Behavioral Sciences).  He states that attitude about illness is something you can control when the illness itself is not something you can control.  This is a struggle for me somedays because truthfully being chronically ill stinks.  I try very hard to maintain an optimistic outlook, but sometimes I just get overwhelmed.

I think I need to come up with some type of mechanism to help me make decisions when the pain gets really bad, because I make stupid decisions like waiting too long to get medical assistance because I can't think clearly.  I know if I have a decision making process already lined out I can just turn to that and follow the flow chart. I can use the part of my brain that is still functioning to get to the right decision, instead of just going into pain overload mode and stalling out.  I need to get with my PCP about rescue medication so I can have that as part of the plan.

P.S.  The link to the powerpoint presentation was provided by an RN who maintained a discussion group about pancreatitis and sphincter of Oddi disfunction.  Thank you Michelle!

Sunday, April 18, 2010

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. 

Saturday, April 17, 2010

Bad Headache No. 3 2010

No More NuBain EVER

Ended up in the emergency room last night.  I knew it was coming yesterday morning, but hoped I might be wrong.  Stubbornly I worked the whole day & drove home, but barely made it there with the last 15 minutes of the hour long communte being pure agony.  I thought about driving straight to the ER from work, but that is a big hospital and I would have waited forever to be seen and someone would have had to drive in to get me.  Instead I decided to chance the drive home.

It's bad when you end up at every traffic light praying for it to turn green as the pain mounts and you're not sure you can safely continue to drive, and you're not sure you can even make it home.  By the time I was home I was at the "Oh God Oh God Oh God" stage of pain.  My dear mother made me some ice packs and I packed my head and neck in ice trying to bring the pain under control.  Past the point where I could keep medication down, I slathered on some of the skin cream with phenergan and benedryl, but it was already too late. 

My head pain is sorta like a teeter totter - the pain kicks over center and there is no bringing it back down however hard I try.  Finally at nine o'clock I am way past where I can drive, so I call my sister to see if she can pick me up from the local emergency room if I call an ambulance.  She says she will just take me, which I hate for her to do because her husband is disabled from a stroke and her being away very long is hard on both of them.  She comes and gets me and we drive through the rain the 15 miles to the ER.

I have been dry heaving for the last two hours by the time we get there, and starting to shake all over from the pain - a sign for me that soon I won't be able to walk or talk from the pain @ a 10 on my pain scale.  I'm way past the "Kill me now" stage by this point.  The Headache at these stages surges forward with pain then lets off then surges forward with pain again, each time the pain increases a little more.  Every time I try to throw up the pain surges, so towards  the high end of the pain spectrum it gets pretty bad.  My blood pressure was high enough when the nurse triaged me it set the silly beeping alarm off which is like a drum beat in my head - BEEP pain BEEP pain BEEP pain...Augggh! 

Luckily or unluckily I looked so bad coming in, they triaged me within a couple of minutes and was so bad in triage they took me directly back to a bed.  Within 15 minutes I was evaluated by a doctor and in 20 minutes I was given a big shot of NuBain and phenergan.  I was so much in pain I was desparately thinking "There's something about NuBain I can't remember what it is" but I couldn't remember so I got the shot.  I was out of there in approximately an hour after I went in, which is quick for an ER.

The NuBain definitely made me floaty and sleepy but didn't do a thing for the pain.  Ooops, that was what I couldn't remember.  NuBain makes me throw up a lot, and doesn't help the pain at all - it "suspends" the pain at the level it is - the pain doesn't get worse, but it doesn't get better.  Hours later after I got home, slept and then woke up, the pain is still there.  Now almost 24 hours later the pain is still there, just still sleeping waiting for the meds to wear out and then go again.  I'm trying all my tricks to get it under control, because I don't want to end up in the ER again. Definitely for me, no more NuBain.  Sigh. 

I'm so grateful to my sister for her help.  Too many of my family have had to end up in ER with me in order for me to receive pain medication, because they won't give it to you if you don't have a ride home.  Sometimes I wish I just had a shot I could administer to myself without having to pay the $150 copay just to get pain relief.

All of my weekend chores like grocery shopping are on hold.  Hoping tomorrow will be a better day.

Friday, April 16, 2010

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!

Tuesday, April 13, 2010

April Headache Blog Carnival Now Published

This month Diana Lee had assistance with her monthly Headache Blog Carnival, with Teri Robert hosting at Healthcentral.  The theme this month was Migraines in Literature, which was a pretty tough subject to write about.  A very interesting post about Harry Potter and headaches, and as always great miscellaneous posts dealing with headache disorders.

Also Healthcentral has published the results of the 2010 Putting Our Heads Together Poetry contest.  Some very thought provoking works! One of the Honorable Mentions was  Migraine Medication Change written by Migraine Puppet, whose writings have inspired me over the months!  Anyone who has changed meds to no avail will understand the longing expressed in this poem.

I even entered a poem of my own, the first I had written in probably thirty years.  It wasn't bad for someone as rusty as myself at writing anything but prose, and generally business writing at that!  Stretched my mind a little bit and expanded my horizons, but it was very difficult work for me.  I think I probably should practice more at poetry, but not sure if I have the right amount of connectivity to the right side (creative side) of my brain.  Maybe I could get rewired?? 

Here's my little poem below with references because for whatever odd reason I went all Greek pantheon with this....

Hemicrania Continues.... 
Spawn of Hephaestus
Burning ganglion eruption
Burrowing deep to forge another
Twisting turning barb wired spear for
Promethean sport.

The Algea dance maypole madness
Winding hypothalamic strands
Of cascading neuronal darkness
Straightjacket tight
Extinguishing all thought.

Achelois attends blessed by Lethe
Needle driven tonics flow
Down the Phlegethon torrent;
Saved once more from Tartarus
Deimos weeps.

The key to the terms:
Hephaestus: God of Fire and Metalworking
Prometheus: God of Forethought, Stole fire from Hephaestus and was tortured for it
Algea: Spirits of suffering, pain, tears, and distress
Achelois: Moon goddess of Pain Relief
Lethe:  The spirit of forgetfulness and oblivion
Phlegethon:  The underworld river of fire and pain
Tartarus: Hell, the place of ultimate punishment
Deimos: God of dread and fear

Did I get metaphysical or what??  Pretty bad when you need a scorecard to keep track of the deities.  Makes me laugh!! I had a good time doing it, and that's what counts!!! Thank you Migraine Puppet for inspiring me to try!

Monday, April 12, 2010

My Yard is in Flower

But my Hives have no Bees

Started hiving today.  Not sure why, but I suspect it is the shot of prednisolone wearing off creating a backlash of hives.  I do that every so often when taking steroids. The nerve pain in my legs and torso was very bad this weekend, and very bad this morning, but a little better this evening because I have sorta just sat around.  Another call in to my PCP to see what next.

The Headache is trying to interfere with this week's work, but I have managed to back that sucker off by changing the stimulator settings.  I am going to have to go back to Cleveland sometime soon to pick up my electronic headache diary again to finish the headache study but haven't heard from them yet.  One of those days at work where I spun my wheels.  Did several productive things, but felt it made no difference.

My boss, The Big Man, is on the road again this week to another prospect.  He's been in super sales mode, and I'm so glad for him and the company, but my body just is not going to be able to keep up.  Wishing I could trade up for a newer model!  It's so frustrating - we are having one of our best years yet as a business and I'm coming up short when I want so much to be pushing forward with all I have.  The new trainer is working out great - she is fantastic!  So I am very much pleased with that.

My cherry trees are blooming, as are the forsythias and my persian lilacs.  This is the first year my wysteria has blossomed so Woo Hoo!!  The yard smells wonderful with all the flowers. A wild turkey went across the backside of the place this weekend and through the neighbor's yard.  The meadow out back is green and shady and it looks like the glade where the deer bed down is doing fine.  We have a pileated woodpecker family back in the woods, but they are pretty shy so no pictures yet.

Going to go to bed pretty soon, after taking quite a bit of benedryl.  Itching all over and hiving.  Just call me Mr. Bumpy or I guess that's Ms. Bumpy to be politically correct.

Saturday, April 10, 2010

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.

Monday, April 5, 2010

Dysfunctional Legs

I Need the Ministry of Silly Walks

Another one in a myriad of doctor appointments today. Trying to see what can be done with The Legs. The Legs are still hurting and last Wednesday became extremely numb and weak. I quit taking the Soma and Percocet, thinking that was what was making me have the weakness, although I really wasn't taking very much: one pill of Soma each night, and one of Percocet every third day. The scripts were for much more, but I don't like to overtake these kinds of medication.

Saw my PCP today. I have no reflexes in my knees - none zero zilch. I can't push against pressure with my lower legs or my feet. No wonder I have been having trouble driving and standing and walking and going up and down stairs!  I did manage to climb a ladder last weekend but I couldn't really feel the rungs.  My feet are extremely numb, I don't sense where they are in space, so I walk a little funny. Feel as if I'm in a Monty Python skit! 

The doc said that the Soma wasn't causing the weakness, nor the Percocet.  I've got a lower dose of Soma now so maybe I can take it twice a day without being totally wackydoodle.  He thinks I may have something going on in my lower back.  I think my nerves are getting worse but don't think there is anything wrong in my bones - just the radiation damage kicking in again.  The MRI I had last year ruled out any disc or bone problems or cancer recurrance or nerve impingment.

Got a shot to reduce inflammation in my sciatic nerve, but if it doesn't get better in a couple of weeks, I will have to have a CT scan. Sigh.  The Legs can't be acting up now, I've got install after install this year to work through. The new software trainer needs to be trained before she is let loose to be on her own, but not quite sure how I will get this done.  I guess I will try and suck it up, as I have to go back to a client's this week and walk walk walk...sigh again.  I am truly dreading this, when usually I am excited by getting to work directly with the clients.

The doc said get a cane to see if that will help me take some of the pressure off the pudendal nerve and sciatic nerve when I have to stand a lot. I bought the standard black economy model aluminum cane with an offset handle. I guess that I'll see how it works. I'm not very good at walking with it, but I think I will be able to manage leaning on it.

I am worried about how I will fare this week. I am driving myself a couple of hours there and back, and not sure how that will work - hoping I will be able to drive home!

I feel I take two steps forward and five steps back. Everytime I get to working full time it seems something happens and then it costs me money plus time off that isn't paid. I am very frustrated because it is costing me almost as much money for medical bills as I am making at this point. Wondering what the purpose is in working, although my stubborn bull headedness doesn't like quitting anything EVER. Plus I just can't leave my bosses in a bind: it just isn't sporting.

Sunday, April 4, 2010


Easter Visit

A cousin I had never met came and visited this weekend.  It's amazing when you meet someone you have never really talked to or been around and you feel like you have known them a million years!  A lot of this has to do with my cousin's personality, she is blessed with having a warm nature and kind heart that makes strangers friends immediately.

Her husband was very nice too, and had the same sense of humor.  I laughed until I cried.  We looked at family pictures and my Mom was able to give her some information on who was related to who and what it was like growing up in such a large family.  Mom was glad to finally meet a little niece she had never gotten to see grow up.  I say little, but my cousin is my age so I guess it's relative to my Mom's age!

I look forward to seeing my cousin again and maybe getting to meet her children too.  Mom was energized because she looked at pictures she had not thought about in years, and brought up memories she had almost forgotten. My cousin's children look so much like my nieces and nephews they could be brothers and sisters rather than cousins.  We got to look at a entire online picture album of her family thanks to the magic of the internet!

We are going to work together trying to trace some ancestry down.  I had done it in the past and she has done quite a bit of work going back even further than I had, so we are going to see what we can find out.  I had forgotten how fun I find that type of detailed work.

The Headache tried to make itself known this weekend but I have been able to squash it with voltage so far.  Not much sleep last night because it was being pesky, hoping for a good night tonight!  Maybe I just laughed too much?  Surely not!!!  I'm willing to pay the price for a good weekend anyway.

Friday, April 2, 2010

The Duality of Wally

Always Happy Always in Trouble

Wally, the neighbor's dog, comes by my home every day.  He stops and visits with my dogs and my brother's boston terrier on his way to other adventures.  Wally's owner has to be the most optimistic person on earth, because Wally gets clipped and washed and then seems to immediately find whatever dirt that is available to roll in, wade in, or in this case wallow in.  The futility of keeping Wally clean is obvious.

I wish I could fuse Wally's I don't care attitude and his owner's resilience into my spirit, but I don't think it would take.  I'm a little too practical to think that cleaning Wally up will stop the muddy shenanigans, and too particular to just not care like Wally.

I think I would just dye Wally brown.  Problem solved.