Buffalo Herd Skating = Happiness?

Knuckle Down Buckle Down and Do It

 My sister reminded me today of an old Roger Miller song, Can't Rollerskate in a Buffalo Herd, we used to sing and I'm thinking that's my answer. Been in the dumps lately, can't seem to climb out....maybe all I've got to do is Knuckle Down, Buckle Down, and Do It, Do It, Do It to get my happy back.

Traveled a few days last week to a new client.  Love the interaction, traveled with a great crew, but I did a dumb thing.  I forgot my cane BLING.  I left it setting on the edge of the table in the sunroom.  Legs don't fail me now I was thinking.  I could have gotten myself a new cane on the way but I thought - I will be sitting down most of the time, I won't need it.  Wrong!  It's been payback time since Thursday night.  I couldn't even safely drive to work Friday, my feet wouldn't push against the brake pedals well enough to stop.  They have been in spasms and hurting ever since.

The Legs were functional for the most part during the trip.  I was able to tip myself up on the feet and once I got tromping The Legs got with the program.  Late at night and these last few days The Legs got really upset with me.  Oh. My. God.  Wish I had an off switch.  I found some lidoderm patches I had packed in this luggage from a couple of years ago when my occipital stimulator got installed (hadn't used this particular piece of luggage for quite a while!!).  I used a couple and they helped some of the cramping in my calves, so I may ask my PCP Monday if he could prescribe these for me to try.  I'd like to exhaust all avenues before trying to increase pain medication again and I don't think pain meds will help the cramping muscle problems anyway.  Sigh.

Last weekend a friend came over and we went to Sonic and laughed and talked and had a great time during the 50% off drink special - I had a strawberry limeade - my favorite.  I needed some time to be a person instead of a caretaker for awhile and just to listen to her talk about her daughter and her grandbabies was great. Her oldest grandbaby is in high school now!!!  I remember when he was born.   Big Sigh!!

The cleaning rampage is continuing but at a slower pace.  Thank heaven!  Must have been a full moon or something to put me over the edge.  For me, when I am upset I quit eating and I want to clean everything.  If you saw me and my house, you would know I am seldom upset!!  Ha!  So maybe cleaning was a way to metaphorically clean house upstairs in my brain too.

Maybe all the cleaning and the travel has been too much exercise for The Headache.  I have had to up the voltage and change the programs in my occipital stimulator quite a few times this week.   Perhaps it is the horrid wet windy weather?  Just wish it would behave while The Legs are dancing in pain.  The Belly has been in a fix too, I think it is because I ate some "fry bread" vegetarian taco's at the client's cafeteria last week.  Delicious but way way way too much fat!!  Their chef was so kind when she found out I had a mammalian meat allergy tho.  She had actually heard of it, so woohoo!!!

I am waiting for my blood test results from Dr. House in St. Louis.  I left a message last week, but was gone most of the week so I don't know if he tried to catch me at home or not.  I am just guessing since I have not heard from them that my test results were normal.  Generally in health care they don't waste time giving you bad news, but are in no hurry at all to give you good news.

This next week I have at least 3 or 4 doctor appointments.  I see my PCP about The Legs tomorrow, and a followup on the kidney stones.  I have been running a pretty good sized fever and have been off antibiotics for about five days so suspect I still have an infection.  The nerve damage in my pelvic area is so bad I cannot tell if I have a bladder infection until I am throwing up and have terrible back pain, so it is difficult for me to know what is causing the fevers.  I see Dr. Calm (my immunologist) for a routine followup, and since The Hives have been especially vile lately I will see if he recommends anything more than I am doing.  I would like to have Dr. House's results before that appointment in case something immunological popped up.  I also see my urologist, Dr. Pepper, next week for a specialist followup for the kidney stones.   Since the stones didn't move through very well this time the ER doc I saw after the infection set in suggested I see my specialist.  Big Sigh Again.

I am waiting to hear back from Dr. House before really deciding about retiring because of disability.  I guess I am keeping some obscure hope alive that something might be wrong with The Legs that I can fix.  I want a full array of information before I try to make a life changing decision.

I will try and reach for my happiness again this week.  I feel defeated, withdrawn, overwhelmed with my own issues and with handling other people's issues in my home.  I need to strap on my roller skates and get out there with the buffaloes and go for it, no matter what the song says.  I might just succeed!!!

Barf Bag Blues

Torture by Airflight

Flew home yesterday from Michigan with a hop through Atlanta.  The Headache didn't like me backpacking my PC across the airports, didn't like me lugging my luggage to check in, didn't care for the experience of flying at all. 

I had been lucky all through my 20 days working in Michigan because The Headache only flared up a couple of times.  The Legs were not so good but I already knew I was going to suffer on that count so I was prepared for most of the ouchiness.  The flight back to Missouri was pure torture.

I knew The Headache wasn't good when I lost my driver's license twice in 15 minutes by putting it in different pockets of my purse, and then misplaced my boarding pass three or four times. I almost couldn't stand long enough to wait for the hand pat down person at Flint, as apparently someone was "busy taking care of things" and couldn't relieve the female TSA agent to do my pat down. Now they not only checked my waistband (a new item in the pat down) but they checked their gloves for explosive residue.  However they didn't check the bottom of my feet.  Hmmm - changing things up for the holidays!!!

Many people admired my cane Bling, especially other cane users.  It's sorta like driving a fancy car - you look at what every one else has and compare features.  I did get a courtesy pass so I could board early because I was barely hanging on by the time the flight left.

I was in the middle seat on both flights between the window and the aisle.  In the first leg, I was next to a darling older lady who decided to eat some peanut buttery homemade snacks midflight.  I was already in quite a bit of pain and very sick to my stomach (trying desparately not to take pain medication because I had a hour and a half drive waiting for me in Missouri to get home) when she started snacking.  She didn't look well herself and I didn't want to say anything becuase she looked like she really needed the snack.  I covered my face and tried to breath through my mouth, because smells get amplified when the headache gets bad.  She would put away the snack, and just when I thought it was OK to unmuffle she would crack open the peanut butter warehouse and pop in another one.  Auuuugh! 

I got some ginger ale from the flight attendant, and scarfed down some phenergan trying to quell my growing nausea. My neighbor decided that the airplane pretzels were not enough and went for the peanuty goodness again. The smell!  Every crackery crunch flew more peanut butter smell into the air. Finally I just had to quickly grab the barf bag and let go. I hate public hurling, but there was no way I could get up, get past peanut lady and get down the aisle to the bathroom. I didn't need to say anything then about food smells, as no one around me was eating after that!!!

The poor peanut lady told me she had several headache issues including just having had a nerve operation for trigeminal neuralgia.  I knew she didn't look well.  She had on a fentanyl patch and was eating to help with HER nausea.  Her misfortune to be stuck by me, the puking head pounding idiot. 

I was barely able to carry on a conversation with P.P.L. because The Headache was not happy at all. I hate it when I can't actively and thoughtfully listen.  I somehow inspire people to tell me their stories.  I must have been some very innattentive jerk in a former life because now when some strangers see me within two or three minutes I am hearing details of their lives and misfortunes...or maybe I just LOOK like a listener??

I left my neatly closed barf bag in my seat as I deboarded the plane, as I had no opportunity to get rid of it inflight: I kept having to use it.  Hard to have half your mind trying to listen, and half just thinking "don't barf don't barf don't barf" - no wonder The Headache hurt!

I stumbled off the plane in Atlanta from the cattle car cheap seats, caught up with my coworker (who luckily wrangled herself some business class tickets) and unfortunately had to get across the airport to another terminal where the appropriate gate was opposite where we arrived via the tram.  More walking.  I bought some Coca Cola hoping to drown The Headache with caffeine.  They were just starting to board when we got to the gate.  No rest.  I did get to reset my occipital stimulator before my group boarded.  I pushed it as high as I could stand to bear it.

I get on the plane (again in the middle seat) and down some benedryl with the soda. I was still extremely nauseated but the benedryl helps the pain a little. I had a very nice gentleman sitting in the window seat next to me but the lady in the aisle seat next to me smelled like sour liquor - someone who had probably had too much to drink a day or two before.  Probably not noticiable to anyone else, but when the nose goes into superpower mode with The Headache people with a day old drunk are truly nasty smelling.  Ewwwwwww!

Another hour to go in flight, head pounding, nausea rising - I get a wet paper towel from a flight attendant and try to keep my eyes covered and keep my temples cool.  They announce that the nearest bathroom is for business class only (my lucky co-worker!) and that we coach people would have to go to the back of the plane.  I think - just my luck - a bathroom in sight and I would have to run to the back of the plane.  I decided if the need arose I was going to go for the business class toilet and vomit on whoever tried to stop me.  I made sure the barf bag was visible in the seat in front of me - ready for action!

The lady next to me droned on and on and on in coversation with some guy in a row behind and across the aisle.  They didn't stop talking for the entire flight, and loudly (at least it seemed so to my over sensitive ears) discussed totally inappropriate for public conversation personal issues. It was almost hallucinogenic as their conversation wrapped around my echoing head like a stinky fish wrapper from the meat market. I knew way too much about liquored up lady and lonely guy across the aisle by the time we touched down.  Luckily she breathed in his direction instead of mine so BONUS I was able to avoid barfing again.  Yeah!

At the airport, we waited and waited and waited and waited for the luggage to get to the carousel.   I grabbed my luggage once it meandered around and finally got to my car and headed home.  I was able to stay awake driving by once in a while stopping and resting, and then running the air conditioner in the cold autumn air and once in a while just smacking myself in the face.  WAKE UP!  A long drive in the dark and in the rain.

My head hurts tonight because I haven't given The Headache its allotted rest time.  I worked a little this afternoon, but called it quits before long because The Legs and The Headache and The Belly were all ganging up on me.  Hoping for a better day tomorrow!

Deer Season in Michigan

Motel Availability Issues

Glad I am staying until Wednesday of next week since we have some issues that need to be taken care of software and hardware wise on this installation.  However, I only brought enough clothes for 16 days, I brought barely enough medication for 20 days, and I have appointments that I have had to reschedule for next week.  Sigh.  Did some laundry this afternoon so I have clean clothes for next week.

Rescheduling plane flights so close to Thanksgiving has been expensive, and to our dismay we found that we have to change motel rooms becuase this weekend or maybe Monday is the start of deer season in Michigan, so the motel is booked.  We are moving rooms at the same motel: my co-worker got the honeymoon suite with the red heart shaped whirlpool tub, I get the claustrophobia room which appaently is so small the clerk said if I had difficulty breathing they could see if they could get me another room.  That must be mightly tight quarters!!!  They tried to get me to say I would sleep on the couch in the honeymoon suite and I said nope, I prefer to be oxygen deprived in the tiny room.  I'm a small person, so if it's a munchkin room it should be fine for me.

I have seen a lot of plaid today as I guess the hunters have started coming into town.  Hoping the bullets fly far outside of town and far away from the motel I am staying at.  Being a country gal myself, I get nervous when people who don't handle a gun all year come in droves to shoot high powered rifles in the woods.  99.9% are great sportsmen and sportswomen, but the 0.1% that get "deer fever" can be very dangerous to the remainder.

Having some pain this evening but I haven't taken any pain meds for another day because The Headache was starting to complain.   I feel so stuck betweeen  one pain problem and the other, with treating one causing problems with the other.  Just call me gripey today.  Hmph.

Planning on doing absolutely nothing tomorrow except move rooms.  At least it forces me to organize my luggage and repack. :(

Bad Day Bad Back

Bad Business

I think I'm going to have to hang up my traveling shoes pemanently.  The Legs gave out on me the other day, not wanting to walk.  Last night and today I am incapacitated by pain.

Pelvic pain and The Legs are giving me fits. Last night I took dilaudid with Soma trying to get past the pain and sleep.  This morning the pain was just as bad, so I took a partial tablet of dilaudid along with Soma.  I got to the client hoping I could just work past the pain and do what was necessary. 

The pain just kept getting worse and getting worse until by 10 am I could barely stand to stand.  By 11 am I was trying to stay sitting still and the pain just kept coming, with additional fun side effects of muscle cramping in the bottoms of my burning feet and sudden surges of pain that doubled me over.  By noon I told my boss and coworkers I had to go back to the motel room.  I had no choice but to try to rest and recuperate in order to go again tomorrow.  Not quite sure how I am going to get through the next week.

I took more pain medication and slept most of the afternoon and this evening.  Now The Headache is all riled up because I took pain medication.  I am finding it very difficult to stand, walk, or sit.  I am sick to my stomach partly because of the pain, partly because of the pain medication.   I am itching everywhere because of the pain medication and The Hives. Hoping tomorrow will be better.

I am disappointed that The Legs are not behaving.  I am discouraged that the pain won't stop.  I am worried that I am falling down on my mission for my client and my employer.  I am mad that my health is interfering with what I want to do and what I need to do.   I'm not sure what to do if this doesn't improve tomorrow. This stinks. Big Time.

Bugs in The Desert

Where's a Starship Trooper When You Need One??

Just a quick post from the hotel communal PC.   Good business trip, getting a lot accomplished.  The Headache has behaved itself, but The Hives and The Legs are not happy.  Last time the boxelder bugs had hatched, now huge cicada's are hopping their way around as big as frogs, but at least they are not in my hotel room.  I swear they are about as big as a house - scary like alien bugs.  They look like they could just carry off small children and pets.

Tomorrow is our last day here for awhile.  Very positive group of people here, very excited to learn new methods for doing things.  Sometimes when clients go through a system change over anxiety rules because it is the unknown that is scary and the known that is comforting.  Everyone here has just calmly taken all the changes in stride, moving forward with determination and cheerful effort.  I'm just going to have to refresh my faith that I can move forward in my life in the same way.

I fly back home Saturday hoping maybe I can get an earlier flight on standby in Dallas or else I will have about a 4 hour layover.  I guess that will give me some time to get some reading done!

Battle of the Bugs

Creepy Crawly Critters

Have had to complain to hotel management again.  This time the bugs were on my bed.  I have just gotten through ripping up my bed and shaking out all the covers.  I don't know if I'm going to get any sleep tonight at all and am much too tired to change rooms.  I did call the night desk and told them I am going to insist on an adjustment on my bill, since I complained Wednesday or rather Tuesday evening, and they were supposed to exterminate them but here they are again, off the walls and prancing around my covers.

I have the shivery skin crawling heeby jeebies, but I just have to stick it out this one more night, with check out tomorrow, and then a night in Tucson (praying for no more bugs!) waiting on my Saturday morning plane ride.  I have a dread of palmetto bugs which seem to thrive in warmer climates, but hopefully won't have any of those invading my room.  The bad part is this is such a very nice brand new hotel and I seem to have gotten the bug room.  No one else I am traveling with is having these issues.  I refuse to pay full price for a buggy room, I don't care if the client is picking up the tab.

Thinking of sleeping on the couch in my room, but it may be full of bugs too. Making my skin itch just imagining it.  At least they don't seem to be the biting type of beetles.  Maybe the extermination effort just drove them from the walls into the bed and couch.  Ick!

Ended up today very sick feeling, so skipped supper this evening, and just rested and packed my luggage for checkout tomorrow.  Almost got physically down to where I couldn't pick myself up to go today.    Really need to spend more time here, but physically I don't think I am going to be able.  The Legs are not cooperating, nor is The Belly, and The Headache has been trying to interfere the last two days. One more day I tell myself, and it will be a short day because my associate that is driving us to the hotel by the airport needs to come back tomorrow evening. And after that a loooong day of flying and airports.

Gonna have to pick up the pace tomorrow to get done what needs to be done.  The clients have been wonderful, making very good decisions about conversion issues and future planning.  I only have to explain one time and they fly with it.  Just hope they keep asking questions even when I am not physically here to answer them.  We expect a large number of support issues in the first three months after system installation is complete as people start using the system more fully.  Plus the Spanish just makes it seem much more fun, why I don't know.  I think it is because they are just a fun crew, English or Spanish language.

Going to try to go to sleep, but am sorta not wanting to turn off the lights because I won't know where the bugs are at.  Big Sigh......

Where the West Commences

Traveling Underneath the Starry Skies

I am feeling much better this evening.  I had a very productive day at work, and hope to repeat it tomorrow and the next day.  I enjoy my work greatly, especially when I feel well enough to be there and to think.  Brain cloud beware, I am getting better! Disperse!

I am still very very tired but things are in much better control than last week. I foolishly quit taking the daily plaquenil for my hives after getting home from the last pancreatitis bout. The medication can be harsh on your stomach and can cause nausea, so I was trying to eliminate anything that might be making my pain and nausea worse. Now I am head to toe hives: I felt like finding a tree and scratching my back on it today, but took another vistaryl instead. I am taking the plaquenil again but it takes awhile to build up a blood level.

Will be traveling to a client next week, in the deep Southwestern United States.  Hoping I am up for the plane rides and trouping through the airports.  I am definitely checking my suitcase, but will carryon my boat anchor of a laptop.  It has some legacy software installed on it that I may need when I get to the client's.  Better to drag it with me, than need it and not have it.  I am sure I will find some use for it, if only to use the email to report back to the office.

I will be travelling with my full drug cabinet of medication, but am paring down the quantities - same number of bottles, but less pills to spill.  I ate some real food yesterday and today, hoping to be able to eat next week but I can always just go on with eating every third day.  I am not communicating my travel plans to any healthcare professional, as I am ignoring two different physician's advice and don't want to hear any flak about it.  They don't have to pay my bills: I do.  If there are any adverse consequences I will take the butt chewing later otherwise the less they know the better.

Liquids are staying down, and not only am I getting hydrated, but the cankles are threatening to return.  Oh the woe of cankles - I just know they will manifest themselves during flight time and refuse to disappear.  I get rid of them, and just when I don't want them - reappearo.

I'm going to make the legs behave even if they cankle up on me.  I am going to be a good girl and bring my cane and sensible shoes.  I am working to get The Belly in shape, and pray that The Headache will behave itself.  I haven't been to high desert climates since The Headache began, so hoping it actually will make The Headache feel better rather than make it worse!  The Belly really doesn't like to fly as I tend to dehydrate myself in order to control bathroom breaks, and dehydration makes it really ouchy.  I'll try to keep a little more fluid in my system than I have been when flying lately, so my hydraulics stay in better shape.  Cactus land here I come!

Princess of All Things Pancreatic

Pain Pain Go Away Come Again Another Day

I have tried to work the last two days - was able to do 8 hours plus Thursday, but only did around four hours Friday.  I have some work to do this weekend which should more than make up time - I am trying like heck to do eight or more hours a day.  I tried to eat today, and while I am not as shakey the pain has been somewhat overwhelming. 

The oxycontin tablets (10 mg 2x dly) are helping to take the edge off the pain, but I have what I call pancreatic spasms which this dosage just doesn't touch.  I guess I will cut off eating for another couple of days and then see how the pain is when I try to eat again.  At least I have enough pain the oxy is not making me woozey or drugged feeling.  I am delaying the morning dose until I come home from work, then if able I take the second dose around one or two in the morning.  Don't seem to have much luck getting to sleep so that is OK.

On the up side I did get a lot of work done the last couple of days.  I won't have to travel for work until the second week of August which is a big relief for me.  I am hoping the pain will be much less by then.  I may have to break down and go see Dr. Gnome, but just not looking forward to the trip.

My kingdom has shrunken down to what The Belly commands.  The pancreas speaks and I come to attention.  Having trouble sleeping because of pain and also because the pancreas hurts less when I sleep sitting up - a hard trick to do without a hospital bed.  Right now the pain is pretty much on the severe side - I am hoping that it subsides soon.  Maybe the sitting up part is why I have gotten so much done at work the last couple of days.  Feels better than reclining!

I have an appointment with Dr. SassyPants on Monday.  I do hope I don't have to put on the huge pair of paper shorts again.  With all the pancreatic pain going on, I may put my pursuit of leg pain fixes on a back burner for a while.  I am sick enough I don't want to be poked, prodded or exercised at the moment.  I am even thinking of postponing my Cleveland visit for the end of my trial.  Not sure if I can abide the travel.

Going to try to go to sleep soon.  My petunias are blooming, my tomatoes are ripening, and the weekend beckons - needing a good pick me up, so maybe gardening this weekend will do the trick!  I am becoming obsessed with the belly pain and I need to actively distract my mind.  My weekend work project should help also.  Behave Body!!!  Depose the malicious pancreas cartel and get back to normal (as normal as I ever am!).

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.

Wanted: Brain Mechanic

Tune Up Needed

Have been doing too much traveling, too much standing, too much talking, too much needing to be done on weekends, too much staying in hotel rooms and not sleeping.  The Headache has been at low rate miserable all day today, nothing helping much.  Hoping it is just the day in its 4 day cycle where it is at its worse, and next week will be better.  Have been dogged down by it all day.

The Headache ruins my brain interface with the rest of my body.  I don't react right, I forget things like car keys in my hand, I have trouble comprehending conversations or reading because I am experiencing the world through a screen of pain and confusion.  What makes it through that filter has to be very clear cut or else it gets all blurry and fuzzy and choppy and my brain can't quite make it out without extra concentration.  Extra concentration just is not happening when The Headache makes itself known.

Had a couple of days at home, trying to do what I had to do yesterday because for me it was a good day where I had some extra energy.  Today not so good.  Going back to the clients tomorrow, second week after go-live.  Not sure who all will be there with me besides my programmer/system engineer side kick. Giving the new trainer a week off to be with her family - she has been a real trooper, but even troopers need some R&R.  We had a bit of a problem Friday with converted data, but hopefully had it all straightened out of its spaghetti mess at the end of the day - typical of system conversions, something unexpected always happens, but it was easily fixable once we defined what needed to be fixed.  My side kick and I work really well as a pair (I'm not really sure which one of us is the true side kick - I truly think I am probably both the side kick and the comic relief rolled up in one) having been down this route a few times over the years.  Same drill - different locations.

My bosses (did I ever mention I love my job and my bosses??) bid out new health insurance, and now instead of paying $120 a month for stinky Anthem, I am getting United Healthcare nationwide coverage as a free benefit!  Woo Hoo!  I am sure there will be a downside to United the same as there was for Anthem, but so far so good.  All my specialists are in network, and that includes the Cleveland Clinic!  There also is no in-area out-of-area network like Anthem had.  Another Woo Hoo!  Of course all the people in Canada and other countries are thinking "isn't the health insurance in the United States crazy??" and I'm nodding my head "Yes it is!" - trust us to make something simple into a bureaucratic nightmare.

I think my head needs a tune up, perhaps some new spark plugs...a filter change...or a new cam shaft.  Where's a brain mechanic when you need one??

2 AM Hotel Room Headache Blues

A Very Long Day

Tired tonight, but The Headache is relentless.  It's almost 2 AM and no rest in sight.  Have tried all my tricks to appease The Headache, but it continues.  I stopped the progression at about midnight, but it won't back down.  Hoping for a better day tomorrow.

Our schedule here is changed yet again, but I am flexible. We discussed with the clients what it means if they switch off their old system one day earlier than originally planned.  Not much difference for us, except I have to move training around and train bigger classes, which is more difficult.  The more people you train, the less control you have over the process, but with the new gal helping it should be just fine.

I thought maybe I could skate out of here a day or two early, and that may still happen simply because everthing has been moved up.  Maybe messing with my schedule is what is making The Headache worse, but I really think it was the couple of hour drive getting here this morning.

Love working with computers, but wishing my brain circuits were better wired.  Even my lovely electronic head zapper isn't keeping up tonight.  Praying for sleep to come soon.

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!

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!!!

I'm Pixilated

Where's Harvey When You Need Him...

Thinking today about internal attitude. One of my favorite movies of all time, Harvey with James Stewart, not only makes me laugh it makes me think.  It's all about taking the alternative path through life, the road less traveled.  My favorite quote is:

"In this world, Elwood, you must be oh so smart or oh so pleasant."

Well, for years I was smart. I recommend pleasant.

—James Stewart as Elwood P. Dowd,

I would love to be able to wander through the world, pleasantly surprised by everything just as Elwood was in the movie.  I tend to veer towards the logical smart side of the world, to the point I sometimes don't connect with others as well as I should.  I have built skills over the years to shore up this weak point in my personality, but under stress I have to pointedly refresh my committment to "pleasant".  

I was a disgruntled young person when I was in my early twenties until I dissected why I was being miserable.  I discovered that everytime I was angry or disappointed I had made the decision myself to experience that negative emotion.  I decided if that was the case, why not make a concerted effort to feel happy and joyous and positive instead?  It made a great difference in my life, and still does to this day but the old negativity still creeps in when I least expect it. 

I am adjusting my attitude, putting my positive foot foward, thinking sunshiney thoughts before heading into work tomorrow. I do wish I had a Pooka like Harvey to stop time and whisk me off to parts unknown for a day of pleasant conversation, so I could rest and rejuvinate.  No R&R time for quite a while, and I'm starting to wear down.  Sigh....

Over-Radiation Validation?

The Hospital Has Responded (sort of)

When I got home from traveling this week for work, there was a letter waiting for me from my radiation oncologist.  This is in response to my email asking them to check to see if I could have had been administered too much radiation.  I was courteous but firm in my email fully expecting the same "there is no possible way you could have these problems from radiation therapy" or "I would never prescribe radiation therapy to anyone if it caused problems like you SAY you are having" response that has been my experience from these physicians in the past.  I was surprised.

The gist of the letter states that reactions like mine to radiation therapy are rare (I'll give them that) and according to what was "prescribed" [notice they did not say administered or delivered] I should not have had these problems.  However, they are sending my records to the independent physicists consulting group that is working its way through their files for a full review, both of the external beam therapy and the internal high dose rate brachytherapy.  They ask for patience as a full review will take some time.  I wish they had taken a little more time when they figured my dosage 6 years ago, but I will try to be patient.  It's not like more time is going to make any difference other than me getting slowly worse.  I am glad for the independent review, and hope it will shed some light on my physical issues from therapy.  My luck is that it won't..

I am extremely tired and exhausted.  The Headache is not happy, The Belly is not happy, and I'm not able to do very much.  I have had a very very very very long week at the clients'.  Our clients are very good people, but the chaos of a computer conversion disrupts their normal work flow and creates havoc.  I am excellent dealing with this, but then our clients want me to stay and stay and stay and help, and there is only so much I can do as an outside vendor to solve their problems. 

Maybe I just need to start my own problem solving business.  Hmmm, guess I should start on mine first.  Bummer.

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.

I Have Kaleidoscope Eyes

Scintillating Scotoma

For the second time in my life I have experienced a scintillating scotoma. This is a spreading writhing twisting spinning moving area in your vision that can be an ocular migraine or an aura for a regular migraine. It is very trippy but also very weird. It blots out or covers an area of your vision - for me it was in both eyes. It reminds me of the after image you get after staring at a light for too long, but it moves - for me it was in a counter clockwise direction.

I have friends who have migraines with aura that always see scotomas, but with almost thirty years of migraines I never experienced one until I had The Headache, and was put on Topamax. While still titrating up on the Topamax, one weekend I had an entire day of scintillating scotomas PLUS the added benefit of double vision and seeing trails of colors following anything that moved. Very beautiful and very disturbing. The neuro who put me on Topamax said to quit taking the Topamax, as in addition to the vision disturbances I was experiencing extreme eye pain and had very bad balance issues and was in brainless jabberbox mode. It didn't do squat for The Headache either. Hemicrania Continua just doesn't respond all that well to drugs that help migraines, which is not a good thing.

That was in February 2008. This is December 2009 and I have just had my second episode. This didn't last as long as the ones I had when taking Topamax, just a tad over an hour. I have waited to see if I will get a bad headache from this but so far so good. I have not been taking any new medications, and though The Belly has me under the weather other wise The Headache has been behaving itself. Not sure what to make of this. My left eye that is effected byThe Headache feels kinda strange - not focusing correctly. I have to drive to a client tomorrow to do more training, and hope the scotoma stays away and my eye behaves itself. No time for medical emergencies tonight or tomorrow!

I did turn up the occipital stimulator and put it on a different program to see if that would be prophylactic for a possible migraine.

Not sure what I will be able to do for Christmas. The Belly is trying to bring me down, but I'm fighting back! I have done no Christmas shopping whatsoever. If The Belly has its way there will be none done this year. Part of my enjoyment of the holiday is shopping for others, so this is the most disappointing part of feeling poorly. I have learned in the past couple of years to let go of what can't be helped and move on, so I am not worrying about it. People in my family and my friends understand. Maybe I will feel better by Christmas Eve day and do some last minute shopping.

Just too tired to care about anything but staying out of the hospital at this point. I'm trying to hold it together for work because as usual we are understaffed going into a major install. The new positions haven't been filled yet, and they won't be trained or up to speed for some time after they start.

Work Day - Yeah!!!!

Dammed Demand

I waited out the pain this morning, and got myself to work. I was able to work until five, and then come home and work some extra hours this evening. Today I fielded a lot of questions while trying to catch up at the same time - it was like a torrent of flood water flowing over a dam drowing me. I was glad I was able to make sense having been off so much! I didn't take any type of pain relief with me since I knew I would be tempted to take it so tonight I am paying the piper and the pain meds are not keeping up. Ah, wishing for a perfect world where The Belly behaves!

I am trying to hold it together this week because Thursday we are going to a client to do some training. This time I will have a group going with me to observe and document the training for support purposes and future training sessions. Thank heavens! In the last two years we have had two different persons who were supposed to be my training backup and neither one worked out. They just weren't good travelers - since sometimes we are on the road for days at a time so being a good traveler is pretty important. You have to play well with others when you are stuck for days in the same sandbox as a bunch of other people.

I can travel by myself or in groups, doesn't phase me either way. When I was a project manager I traveled quite a bit by myself and it never bothered me. The worst part of traveling in groups is sharing transportation - you don't have any autonomy. I'm thinking of travel because my boss told me that we have a bunch of installs already lined up for next year, and they are strung all over the U.S. Trying to get the old pancreas back in shape before the marathon starts because I need the stamina. Hopefully we will get some new persons to help, that way I won't have to be gone as much. Hopefully I will still be able to work...sigh....

The Headache is trying to rabble rouse this evening - there is a weather front coming in and I am sure that is why it is worse. The stimulator is keeping ahead of it so far! Hoping that tommorrow will be better.

Barf Bag Envy

No More Cankles!

My Erpiness and Belly pain continue. Today has been minimal food day. I tried to eat a real sandwich yesterday and it didn't taste nearly so well coming up as it had going down. I am wishing I had some of these deluxe barf bags to take with me to the client next week. The nausea hits so hard and fast I fear erping in public.

I guess I shouldn't be embarrased about public puking. I have spewed my stomach contents in many places over the years, due to migraines. When I had migraines (instead of the hemicrania continua I have now) they were called "common migraines" or migraines without aura. They would often sneak up on me, and I would be somewhere doing something and then BOOM a full blown migraine.

The nausea often was my first clue that I actually was having a migraine - the pain grew gradually up to the point I got reaaally reaaally sea sick and then it was a skyrocket of pain for the next three to eight hours. I have thrown up in restaurants, cars, office trashcans, public toilets, parking lots, and the side of the road.

My worst experience was pulling my car over in front of this house hopping out of the car and projectile vomiting - bleah bleah bleah - and then looking up to see a horrified family having a picnic in their front lawn. What can you do? I weakly waved and hopped back in my car and drove quickly away! I had to pull over and just wait the migraine out in a parking lot down the street. Another time a friend and I were in Ft. Lauderdale and had just gotten through walking around downtown and were driving back to the hotel when the migraine hit. I warned him that I was going to pake, he didn't believe me until I started to heave - he quickly pulled the rental car over but not before I let loose on the passenger door. Eeeyou! Next time I told him I thought a migraine was coming on he listened!

I may have to just starve myself at the client's and stick to strictly fluids. I have been drinking some Ensure high protein but even with the pancreatic enzymes The Belly hurts. I've done it before, so I can do it again - it just takes inner discipline. On the plus side I have lost an additional four pounds this week. Woo Hoo! I have now lost all the weight I gained from taking steroids so long last year.

I go back November 10th to see the immunologists in Kansas City, and then I go for the endoscopic ultrasound of my pancreas. Hoping for pretty good news on these two fronts - my hives are actually better than they have been in two years! However my face is swollen and broken out with a rash of sorts - not sure if it is from the antibiotics or there is another reason. Hoping it goes away with the kidney infection that wasn't an infection. I have ankles again, very glad to get rid of the cankles I was sporting. Guess even tho I officially had no infection, the anitbiotic seems to have done the trick.

A weekend of rest, a week of travel, and then back home again to rest. I'm tired already and am just waiting for The Belly to calm down enough to sleep. Next week is going to be a long week I am afraid. Hoping the cankles don't come back, or I may need to get "The Circulation Booster" to get rid of them!

Hole in One

Brain Leakage

Haven't been able to sleep, The Belly hurts, then The Headache, then my neuropathy, then The Belly, ad infinitum. Very tired, have taken two different medication cocktails, waiting for four AM when I can take some meds again.

Wishing I could just open my skull and give my brain a big THUMP or perhaps a noogie. My thinking is kinda slow today as if my brains are just oozing slowly out of my skull, although I went to work and was productive. I only worked a few hours, getting ready for another client visit travel session next week. My ankles are full of fluid so not sure if the antibiotic I am taking is very effective for my illness.

Hoping that The Belly and The Headache behave themselves next week, as it is a multi night stay. The Headache is just misbehaving with the stabbing lightening swift pain but The Belly is in full burning spasmodic pain mode. Maybe I will just have applesauce to eat next week!

I'm so disappointed that my endurance is so low. I wanted to have the occipital stimulator fully functional before the install, and it seems to be, however I am so tired I'm like the walking dead. I can't tell if the fatigue is from lack of sleep, bad kidney infection, or The Belly. Maybe the week after next I will get some good news from the EUS. I really could use some good news!!