Saturday, February 28, 2009

Last Week - Sigh

Nothing is Set in Stone

Well, the Cleveland Clinic appointment has been delayed another week, because the study committee didn't meet this week to discuss my psychological profile. So I am still in limbo - have now moved my airline reservations to the 19th of March. I will be very disappointed if I did not pass the psych exam.

Haven't blogged for the last few days because my pitiful pancreas has been throwing a fit. Was just able to work a few hours the last few days between The Headache and The Belly. Had to do more blood tests because of The Belly. I just called my GI doctor to ask if I should take maybe more pancreatic enzymes with my meals, and we started down the pancreas party trail, with more blood tests and as of today still not an answer to what I thought was a simple question and my pancreas burning its way into my innards like a branding iron. My back is hurting like it did a few months ago - poooor little pancreas!!

Today we have a last gasp of winter with a nice two inch fluffy layer of snow, no ice! I worry about the poor robins who have been sporting around the yard the last week.

Another strange dream last night - I had a library in my bedroom, and there was a parade with floats and everything staging just outside my bedroom. I could see the tops of the floats through my bedroom windows. A family was in my room, trying to find books to read and lounging on my bed watching TV (I don't have a TV in my bedroom but in my dream it was in the bookshelves of books). I was helping them find the right books, there was a teenager section, a child's section, a non-fiction section and a self-help section we looked at. The oldest person was the age of my mom, but she had black short curly hair instead of white hair, and she was the one lounging on the bed the most. I had to put on a designer pair of jeans that had a yellow sign down one leg that said "My Child went to New York State!!" - don't know where that came from. The dream ended with me hopping around trying to pull on the jeans that were exceptionally stiff because of the yellow sign.

I dreamt the night before that my cousin's little girl (she's probably 32 now but was little in the dream) got hit by lightening - a sheet not a bolt of lightening - and my cousin wasn't even concerned - she just dusted the bits of carbonized clothing off her daughter and said she would clean up just fine. We were watching out the back window of the house I grew up in at the pouring rain, and the lightening hit and when we could see again the little girl was just standing there with smoke curling off of her and there was no more rain. I kept trying to convince my cousin to call 911 but she just was whisk brooming off her daughter and insisting there was no problem.

I'm sure there is a deep meaning to these dreams somewhere but the coconut monkeys are knocking and my brain is too loose to figure it out! I think there is some correlation to the TV shows I was watching on specific days - especially the lightening one - there was a show about people getting fried by lightening because of some nano virus that night.

Wednesday, February 25, 2009

Bad Headache Day #18 2009

The Reason for The Headache - Coconut Monkeys!!

Bad headache today. My hope of last week is gone. The coconut monkeys have been at my head with their coconuts all night and all day... what a turnaround - they were so helpful in my dream...

I started taking the indomethacin closer together today to try to avoid going yet again to the ER or urgent care. I have also taken quite a bit of Benedryl and phenergan, and after The Belly kicked in this evening, some trammadol. I'm having a great deal of pain in my feet and legs as if my neuropathy has decided to come knocking since The Headache and The Belly are getting all the attention. Despite all the medication, The Headache has been so ouchy that I can't sleep. Wish I could just sleep today away but it hasn't happened.

The Belly was getting pretty bad this evening, and for a while I thought I might end up in the ER after all, but it is now down to a simmer rather than a full boil. At least the coconut monkeys haven't started on that yet.

Wasn't able to go to work today. I love my job and the company I work for. As my sister said, its my dream job! My boss is sooooo nice, and so are the other owners and that makes me even feel worse because I want to do my best for them and The Headache and The Belly are conspiring against that.

I now have an appointment March 12th at The Cleveland Clinic for my initial eval for the stimulator study. It is seeming as if it might happen, but I still am not getting my hopes up. The psychological testing is not fully written up yet, and if I flunk that then its a no go. I'm pretty sure I passed it, but one never knows. The chronic pain just messes with your mind in all kind of funny and not so funny ways. I am going to try to fly out of St. Louis so I only have a four hour drive. I think the driving is why my neuropathy is bothering me, but standing at an airport gets pretty tiring for me also. There is a rail (maybe a subway) system from the Cleveland Airport to downtown, and buses that run from the rail station to the Cleveland Clinic so I can avoid renting a car. I plan to stay at the Clinic this time if I can. I don't have enought Marriott points to get another free room.

Tuesday, February 24, 2009

Three O'lClock in the Morning

Oh Well, Here I am again!

It's about 3 AM and I'm up with my head packed in heating pads. Gosh Dang the Ding Dong Ploinkity Plarn Kachoing. My eyesight is wacky and I can't find my glasses - guess you have to see the confounded things to find them. Double vision city, thanks to the almost 50 year old eyes.

I sure hope I'm typing this up OK because it's a little blurry (well maybe a lot blurry) for me without the peepers getting assistance from the glasses.

My faithful cat Wilson is here keeping me company. She is getting older (she is 19 years old this year) and gets lost between rooms. So i go into the kitchen and she meows because she's lost and I call her and she finds me, I go to the living room, she meows because she's lost and I call her and she finds me, ad infinitum. I hope when I am as old in people years as she is in cat years I will have someone to help me find my way from room to room.

I wish I had a crew of coconut monkeys to help me out here, but no such luck in the non-dreaming world. My mother and I had our weekly Monday night viewing of the Antique Roadshow, and a pleasant time was had by all. It is a ritual that is only spoiled by the fund raising weeks when "specials" replace the beloved Roadshow. If only my W.D. Purrucker paintings were worth hundreds of thousands of dollars! And I only paid Three Dollars for them! Sigh....I would find out that they weren't worth Three Dollars (which I suspect is true) with my luck.

Wilsy is complaining because the lights are on and I'm up and she thinks its morning again already and she wants her can of food. She wants to jump up on mylap because I am covered up in a nice red fleece blanket that she really likes. It isn't my attention she craves but the fluffy softness of the blanket. She is getting louder because I am ignoring her, and now she is trooping across my computer desk so I have to pick her up. She tries to snag my blanket and take it with her, but no way! She needs to go rest in her cushy afghan that is on the couch and leave me and my blanket alone. Since putting her down she is sitting with her back to me as if I no longer exist. Cats!

I may try taking some good old phenergan and Benedryl in a few minutes to put my head to sleep. Sometimes it works sometimes it don't. I have a big wood relief of the word RELAX on my desk. I will meditate on that, and see if my expensive biofeedback training can assist.

Monday, February 23, 2009

Work Day Fool

I Think I Fool Myself

I've been so full of hope the last few days, thinking maybe The Headache is disappearing - vanishing back to where ever it came from. Back at work today, have been having ice picks poked in my head part of the day, and by this evening a familiar heaviness is returning to The Headache. Very disappointing. Wondering if my pain difference was just a placebo effect from a dream. Wondering if I even have the capacity to rate my pain anymore. My objectivity is definitely shot. However I did work 5 hours today, and you have to add in two hours for commute time. Woo Hoo!

Good news or bad news, not sure now how to take it. I got a phone message today that barring my failing the psychological test I am in the study for the implant, and to setup an appointment for the baseline study. After that I will have to keep a headache diary for a month, and based on that information I guess they then evaluate me again (???) to see if I'm a candidate for the trial implant and IF I am a candidate and that implant helps THEN I get a real implant, but one chance out of three I will get a fake implant for three months.

I think this is why I am so desparately wanting a miracle fix for The Headache. At the best I am facing another month to three months of rollercoaster headache land. I read some comments that the headaches can be worse at first with an implant until they get the implant programmed correctly. I wish The Headache would just magically disappear, and had great hopes last weekend it would happen. Guess it is Alley Oop and back to the high wire act that balancing The Headache has become for me.

Sunday, February 22, 2009

Taking Indomethacin Again

Coconut Monkey???!

I was able to go 24 hours without Indomethacin and without The Headache escalating into a tornado of pain. There was a steady dribble of increased pain during this 24 hour period, so if I had waited another day, I might have been in trouble. I started out at a 4 and ended up at about a 7 in a day. The Belly is grateful for the vacation.

I was starting to get the pain jitters - where you just can't keep your arms and legs still. I am getting so used to The Headache, that I have to clue in on other signs to tell if The Headache is trying to attack.
I took 50mg of Indomethacin about 30 minutes ago and can feel the cooling relief where it is destroying the burning ouchiness that is The Headache. I am extremely tired for no real reason. I think The Headache has been hurting more than I want to admit.

I had another weird dream last night. We were living in a coconut jungle with coconut monkeys and had concocted some kind of Rube Goldberg contraption using bamboo, vines and rolling coconuts to wake us up in the morning. The monkeys had constructed it for me, but had shorted us on vine material so some of the bamboo sections weren't dropping in correct sequence. We were trying to "unstring" the thing, and it was becoming a big mess, and the monkeys were very irritated because we were changing their setup. Everything was kind of that dried out brown color of dead vegetation (or mature bamboo) except for the luxurious brown fur of the coconut monkeys and thier shaggy brown coconuts. The dream ended when I was down on the coconut jungle floor surrounded by coconut monkeys conducting a meeting on how to correctly fix the coconut contraption. Not sure what a coconut monkey is but they looked like a cross between a lemur and a chimpanzee, and were quite bright. The coconut jungle was quite dry, not a tropical rainforest at all, but the coconut monkeys felt quite at home.

Saturday, February 21, 2009

Indomethacin Free??

Try Try Again!

I tried yesterday to quit the indomethacin. Not a great idea, The Headache came back, but in altered glory, and I ended up taking indomethacin again in the evening. The pain is still different.

It's bizarre. I was dreaming that night of a green glow around the back left side of my head where the pain seems to begin and a grinding noise like sand underfoot. Maybe I just biofedback myself into being better?? I have constant pain, but it is indescribably different. It's like someone picked my head up and put it on my spine in a different manner. Some of the neck and shoulder pain is less also. I think contemplating the stimulator surgery has scared the bejeezus out of my headache. Good, at least something does!

I am going to try again today to go off the indomethacin. It's noon now, and I haven't had any since last night. I'm about at a level 4 or 5 on my personal pain scale but it doesn't have that "scaling up" feeling. I'll see how long I can go without any medication. God is Good and hope is not dead. I'm gonna try to do some housework - physical activity has been a significant trigger for me - hopefully that will be different too!

Thursday, February 19, 2009

The Headache Changed Today

Change is Good I hope

For the first time in a more than a year, The Headache has changed. It is still there, but the pain is different. I'm not sure if it is different good or different bad. I woke up today with it changed.

It would be just like me to cure myself without even know why it happened in the first place. I can just hope! It is now a burning silvery pain where before it was a heavy piercing pain. Not sure what this means. I still was not able to put in a full day's work, the burning pain I think is distracting me, sorta like a large needle piercing the back of my head and poking me in the back of the eye. Hmmmm. Hoping for a better tomorrow!

Wednesday, February 18, 2009

At Work...Yeah!!!!!

Joyfulness of work

I was able to work again today. Yeah!!! Another five and a half hours in! The bosses prepay us for Thursday and Friday based on work estimates and then we can adjust it the next payperiod if needed - this works great because 99% of us are salaried. However, my work schedule has been soooo bad the last two months, I didn't even try to estimate any time. I'll just take the hit on this paycheck, and if I work any time in the next couple of days, just add it to the next.

The Headache didn't want to be at work, but I made it go. The Headache tried to interfere all day long. I am trying the "just ignore it" method that my cat uses when you try to show her a mouse. If I put my back to it, it just doesn't exist in my universe. It doesn't work so well today, but I'm just not good at it yet, I need practice. I'm sure The Headache will cooperate and give me many more chances.

The Belly was better today, probably because I let it dominate my day yesterday. Not eating or drinking much works pretty well for The Belly. I gave it some vegetables today. Hoping for a good night's sleep!

Tuesday, February 17, 2009

O Pancreas O Pancreas

The Belly is in Charge

My pancreas today was lumping around in my belly like a bucking bronco. I ate some meat protein last night and The Belly didn't like it. I don't know what there is about protein that sets it off, but it sure is gripey today.

The Headache is behaving itself today after a very bad night last night, but it just may be that I am so medicated because of The Belly pain so I'm not noticing. If it keeps up tomorrow I may give up and see a doc about it, but I'm hoping a day of rest and relaxation will get The Belly back to tip top shape. Sometimes the doctors insist you go to the hospital and I don't really want to go.

I got about an hour of sleep last night and finally had to give up and take The Belly painkiller because The Headache was not cooperating and The Belly was lumping. Sometimes when The Belly lumps The Headache jumps. I'm not sure why.

I tried sleeping sitting up in the living room on my sectional, and after taking The Belly painkiller (just trammadol nothing terribly strong) I halfway dosed off. I kept waking from dreams thinking this dream looks just like my living room. Duh! I was looking at my living room! I took my morning bath and got ready to go to work, and sat down on the couch and the next thing I know its almost two o'clock in the afternoon and The Belly was trying to tie itself in knots.

I guess this just isn't my year to earn money. No work today! All I've eaten today are some grapes, and my medication. Not eating anything makes The Belly gripe about the indomethacin. I have cut down on the liquids because anything in The Belly is irritating it. There is no winning for losing here. I'm taking phenergan but the nausea is building and I may have to switch over to reglan. Hopefully tomorrow The Belly will be better and today will just be a distant memory. The Belly has won this round today.

I hope I qualify for the occipital stimulator study, because I am going to have to quit taking this indomethacin fairly soon if The Belly has anything to say about it. I'm just glad I have the best boss in the world. He's trying very hard to work with me to get me back to work full time!

Bad Headache Day #17 2009

Two AM Blues

I thought I had toughed out The Headache yesterday, yet here I am at 2 AM sitting like an idiot in the dark with my head and neck wrapped in microwave heating pads. Sometimes it helps, sometimes ice helps - I never know. I've got the Popeye squint going on because of the left eye issue. Just need a pipe to "toot toot" with and say "I yam what I yam!" and maybe I need to eat a can of spinach. Blech my stomach is already riled up just thinking of spinach makes it worse! Although with tatoos so popular I would be very trendy to get a couple of anchors tapped into my forearms!

The Belly is turning flip flops not in a nice way. I am having spasms but am trying more trammadol to see if it helps. I ate meat this evening. Even with the pancreatic enzymes meat protein is very difficult for me to digest. My imagination has my pancreas humping around my innards like an inchworm on a tree.

I'm typing now in the dark just to distract myself. I'm having trouble tolerating glasses on my face, so some of this is done middle aged blind, so forgive any spelling errors.

I was having such a good evening too, since the highlight of our week is the Antiques Roadshow on PBS. I don't know why we find it so absorbing, perhaps it is a lifetime of collecting various types of things, or perhaps the vicarious sharing of others' joy at finding how valuable their bargains or inherited items are, or maybe its the historical aspect. We used to watch the British version also - it is amazing how much older the antiques are on the British version, reminds me that as a country the United States is pretty young.

I may go soon and try to sleep sitting up. Another headache veteran suggested this, and it has helped a couple of times. The Headache itself is too intrusive to sleep at the moment.

I have started following several blogs where the bloggers are keeping photo blogs. They are from all different areas and countries. It saves me from feeling so confined - I get to see what they think is viewable. Very interesting viewpoints sometimes indeed. My favorite this week was a picture of heart shaped salami cold cuts for Valentines day.

I had another vivid dream the other night, this time about a boy I graduated with. We were at a Mall, and he had hurt his back and one leg (the right side where I am weaker) in a football game. My cat tried to lick his hand to make it better. Why was my cat with me at the mall? Not the slightest notion. Everyone was going to the big game by jumping in huge circular inflatable rafts like they use to ride the rapids in the Grand Canyon, and going "Wheeeee" as they turned and road a giant white waterslide (this was as wide as the inside of the mall and very hilly going downstream) out of the Mall. The guy wanted to go sliding also, but I was afraid he would be bent all out of shape because of his broken bones - kinda like Gumby. But those rafts sure looked like fun. Then I woke up. Maybe I was remembering sled riding, as my brother in Iowa and I were talking about it the other day and how his middle aged bones weren't made to be flexible anymore.

Popeye ME

Monday, February 16, 2009

Good day? Bad day? Boomerangerama

At least I got to go to work!

The Headache was pounding away today, burning and piercing my brain so it was hard to think and hard to sit still. I woke up with it at 3:00 a.m., never a good sign, yet I triumphed over it, and did 5 hours of work today!

It becomes so difficult to think with my mind returning to pain each minute it increases, sorta of a boomerang effect: The Headache, I'm driving; The Headache, I'm typing; The Headache, I'm talking on the phone; The Headache, THE Headache, THE HEADACHE, try something else....

I did the pain dance with my feet under my desk, I couldn't stop myself from grabbing my head a few times and moaning, BUT I did make it through the day and back home where I could take some more benedryl and phenergan, so I'm not counting this as a bad headache day. It was a moderately bad headache day that I got through without making myself unconcious. I'm still doing the dance of pain, but not as many times an hour.

I hope I was moderately productive at work - I can't tell when The Headache is really active. I hope no one noticed my efforts to keep the pain at bay - its bad enough I feel so bad about missing work - having my fellow workers notice my pain jitters is worse. I am trying to gain control of my body and it looks like I'm losing control of it. Thank heavens they have never seen me at times The Headache wins. It just feels so undignified.

Saturday, February 14, 2009

Bad Headache Day #16 2009

Goldfish out of water

Well, I knew I was risking fate when asking for three good days in a row. Yesterday was not a good day, but thankfully I was able to sleep through most of it with the help of my friends Benedryl and Phenergan. Add another urgent care visit to my year, but this time I got antibiotics too! Apparently, dehydrating myself in order to drive 13 hours to Ohio and 13 hours back to Missouri was not a great idea....but hopefully I will be in tip top shape by Monday.

Under orders to hydrate, hydrate, hydrate I have been drinking cranberry juice all day and water water water. The pancreas enzymes and liver enzymes were up but at least not at the hospitalization level yet. Maybe the antibiotics will help...

The problem with drinking liquids is that I have to medicate for pain and nausea because The Belly right now isn't taking kindly to anything. So yesterday was sleepytown, and today was slooooooow moving. Tomorrow should be better, and hoping again for a good Monday.

My boss at work is so great. Just being able to work 10 hours last week, I was feeling very guilty when I finally woke up Friday afternoon. I hadn't even called in work! He said not to worry, they were holding down the fort. This is the worst part for me, because I really like my job and the people I work with. I've been there six years and that's a year longer than I've kept any job in this area since I moved here 20 years ago. I hope to be here until I retire. That's why I hope I get accepted in the occipital stimulator study. I want to work, and I'm not ready to throw in the towel and say I'm disabled yet.

I had a strange dream yesterday. In the dream my family had rented a cabin in the mountains. We went into town where there was a festival going on and I had forgotten all my ID's and my purse. We went back to the cabin, and our feet were dirty so we looked out the back patio doors and a wide clear stream with gold fish in it was right at bottom of the door. You could see the rocks at the bottom and little gold fish swishing back and forth. I opened the door and I was going to put my toes in to see how cold the water was, when I thought "This is probably deeper than it appears" (I guess thinking the same as the rear view mirrors on my car where objects are closer than they appear) and I woke up. Maybe I think I'm getting in over my head?? Who knows - perhaps I will dream again tonight!

Thursday, February 12, 2009

Another Good Day!

Back at work two days in a row!

Worked another 5 hours today, and I am overjoyed. I was not as productive as yesterday simply because the opportunities just did not arrive. Working on some documentation for a new admit screen, so at least there was some mind work.

A co-worker is having some pain, and is taking quite a bit of ibuprofen. She isn't able to think or work with the combination of the pain and the drowsiness she gets from the ibuprofen she takes for the pain. Today she went home early, and I had to congratulate myself - not because of my poor fellow workers pain and sleepiness - but because I had been feeling down about only working part time. Here I am taking a toxic soup of chemicals just to keep going, and I'm coping with it just as well as my coworker is for a temporary (albeit serious) pain AND I have been doing this for over a year now. Maybe I'm tougher than I feel.

A good day, a good evening - hoping for a third good day in a row! Could I be so greedy? Yep!

Wednesday, February 11, 2009

Tomato Noodle Goodness

A Fine Day

I was able to work today! Not only did I work 5 hours but I had the brain power to solve several problems for customers. The Headache is down to its usual good day growl, and I'm not eating much so The Belly is feeling better too!

I felt well enough tonight to cook some tomato noodles for my mother and myself. My sister gave me the best Christmas present last Christmas - a year's supply of HOME MADE NOODLES! She makes the best home made noodles in the world (well except maybe my Aunt Nadine's). Instead of beef & noodles tonight I made tomato noodles which agree with The Belly better. Happiness in a pan. The picture probably looks yucky and maybe only my family would eat this but it topped off a happy day. I wish I had more days like today.

Of course, its my first day back at work after the trip to Cleveland. I guess one person was expecting me to come back with wires in my head. It was fatiguing to explain the same thing over and over and over. No, I didn't have a procedure. Yes, it was just to determine if I could have the procedure. No, I don't know anything yet. Yes I may have to take more time off work. They didn't mean to be tiring - its just that I have such a small store of energy it takes a lot to be "up" when working.

Bless their hearts they try to identify, but there is no way for them to know how much pain I can get in from The Headache. I pray I can maintain my dignity and not have them ever see how bad it can get - it's bad enough relatives have had to see it. It's bad enough I have to experience it, and I sometimes have to inflict it on strangers in ERs and urgent cares. I prefer my friends and co-workers to see me in control. It's one of the last illusions I have!

Bad Headache Days 14 & 15 2009

Yesterday's Gone, Tonight The Wind Blows

I don't remember much about yesterday. The Headache started in the middle of the night and after calling in the AM couldn't get into my regular doc. I let the hours tick by waiting for a callback to see if they could work me in, until it was too late and I had to head to the ER.

I went to the closest one, and sure enough there are no patients there until after I show up. Some poor lady who had had two strokes and now had pnuemonia, and an old guy from a car accident come cruising in. Instead of just getting a shot and getting out of there, I wait and wait and wait in an ER enclosure for them to give me the $@#% toradol injection and get out.

Well, the wait was too long so they give me the toradol and it doesn't do anything, they then add phenergan and something called NuBain to it. Well, the NuBain makes me woozier than heck, and knocks all knowledge of pain out of my body EXCEPT for my head! The Headache just gets worse because time has marched on again. My BP lowers, but not very much. Then they say well, we will try some dilaudid....My BP lowers again, but not very much, but the dilaudid did take my headache back a few notches. Success!

I wooze my way out of the ER, vomit all the way home (my poor brother again driving) and wooze my way to the couch. I sleep off and on, getting up only to have the dry heaves. By late evening I am sure I can hold some liquids and some crackers, but no go - to the bathroom I wooze again to toss it up. At about 2:00 AM I was able to hold some water down and my medication, and sleep. I don't think I will be adding NuBain to my list of successful medications. The Belly didn't like it, and it didn't help The Headache at all.

Today, rain and wind and tornados to the west of us has made this a gloomy day and gloomier night. I have slept through most of it, but The Headache is on ice this evening. I feel worn out and tired, and The Headache is trying to make the most of it! The Belly still is not feeling well, but I have drank some lemonade today and kept it down so I'm good.

The wind is whistling around the house and down the chimney and drippy icky rain is coming down in sheets. Tornado watch until midnight, but the local forecasters say the danger will be there until 2:00 AM. I will go to bed soon since the tornado watch is over although the rain and thunder continue. I hope to go to work tomorrow and hope for a better day!

Saturday, February 7, 2009

New Theory - Post Operative Peripheral Nerve Injury?

Just Thinking

When I was at the Cleveland Clinic - the docs did not seem surprised that my symptoms started post-surgery/ERCP. That started me thinking - sometimes that's a good thing and sometimes that's a bad thing!

Many of the persons I have corresponded with concerning Hemicrania Continua have had it start or worsen post surgery. Mine started post surgery.

My body was positioned on my left side and I was told I would be repositioned after anesthesia with a roll forward towards my stomach with my face facing left and my left shoulder to the rear of the table. My HC pain is on the left side of my head. There seems to be a lot of literature about problems with perioperative and operative peripheral nerve injury - making this a known issue when dealing with unconscious or semiconscious people. My head would have probably been positioned with the left side down and my left shoulder to the rear of the table. I know there were issues with a bad allergic reaction during surgery which might have caused additional issues with positioning due to the emergency nature of the reaction. Could this be the cause? A peripheral nerve injury to the left occipital region of my head/neck? It makes more sense than just magically getting a headache that won't go away post surgery.

I've included a few links on the blog concerning perioperative nerve injury if anyone would care to peek at them. If anyone has any other ideas let me know! By the way the picture has a link to the website where I found it. Click on the picture to go there!

After Headache Day #13 2009 Home Again!

Recovering from the Extreme Cold

Back home after making the trip to the Cleveland Clinic. One day to drive up (with a bad snow storm for the last hour of the drive) one day for medical appointments, one day to drive back. The weather was very very cold - on Thursday I woke up to zero temperature with a -20 windchill. It's been about 20 years since I was out in weather that cold.
Thank heaven for small favors - Wednesday, the day I drove up was a great day. Clear skys and clear roads almost all the way to Cleveland AND The Headache was behaving itself. The Belly was in rebellion so I resolved to not eat much for the next few days to see if that will help.

Thursday went to the clinic, and was seen by the pain management team. After I spiel off all the things that are wrong with me I feel guilty because two different people - a nurse and a doctor - have to type up notes with all that in there. Type Type Type. Sigh - and especially when I have to say pancreatic billiary sphincterotomy - no not sphincterectomy that's a different operation - sphincteroooootomy . Poor folks - and of course the question is always asked - are you depressed, and I say "No, but after that list I just gave you of what's wrong I'm starting to think I should be!"

The doctor I had the appointment with came and put pressure on what I am guessing are my occipital nerves. On the left side, it was quite painful and zinged up the middle of my head and around by my left ear. On the right side it didn't really hurt at all. I was told after further description of my headaches that I was a good candidate for an occipital nerve stimulator implant. Yeah!!!

I was then told that this use for the stimulator is still felt to be investigational so my insurance probably won't pay for it, BUT I might be eligiable for a study that would pay for it if my insurance wouldn't. The study coordinator came in and questioned me closely and I ended up signing up. I won't know if I am eligiable for a least a couple of weeks.

The headache disorder I have (hemicrania continua) should disqualify me from the study, but the doctor who saw me assured the coordinator that I would qualify. Not sure if that meant my diagnosis is wrong, or that I am in such bad shape they had pity on me! I had to take a psychological test and interview first before anything else could proceed. The doctor that did that was kind enough to work me in after 5:00 that afternoon so I could head home the next day. I should know in a couple of weeks what the study committee decides - am I a keeper or a tosser?

The Headache decided that day that all the walking I was doing was going to rile it up. Physical activity is a trigger for me - the more I walk or sweep or shop or drive the worse it gets. Because The Headache had started its march that morning when I parked the car in the very large parking garage of course on the wrong side of the clinic complex. I was able to traverse the four blocks to the building I needed to be at indoors except for the last block. That was a windy block indeed! Same going back.

I paid my parking fee of $10.00, then went to look for my car in the parking garage. I couldn't find it! There were a lot of cars that looked like it, and as I walked in the cold cold garage The Headache got steadily worse making it harder for me to recognize the durn thing. I finally went to the top story (7th floor) and walked it down towards the bottom, checking for my car on every level. I found it on the second to bottom level where I had walked by it four times before. THEN by the time I got in the thing I realized that I had lost the paid parking voucher. To get out of the garage I had to pay the $10.00 dollars again.

I made my way back (15 miles) to the hotel, and then after getting an appointment for the psychology test drove 20 miles out to that clinic. The Headache was getting steadily worse. On my way back from that appointment in the dark I went the wrong way and ended up 40 miles further out of town. I finally figured out I was going the wrong way, so I turned around and drove back 60 miles to my hotel - making that a 120 mile round trip. I was able to take benedryl/phenergan to knock The Headache back a notch or two and go to sleep. I should never drive when The Headache is gaining control but there I was gadding about some distant suburb of Cleveland thinking I should have been downtown by then! I was very disoriented but it all turned out OK.

Augie and Wilsy were quite happy to see me come home. Augie had to run run run to show how glad he was to see me. Wilsy of course is just sitting around griping at me in her old kitty voice. It's good to be home!

Tuesday, February 3, 2009

Bad Headache Day #11 & 12 2009

On The Road to Cleveland

Yesterday is mostly a "lost" day. The Headache roared back, but I was able to make myself sleep through most of it. Subsequently I don't remember most of yesterday, and today The Headache is still making itself known. I look at this as a good prospect for my journey which I will try to do starting in the early AM tomorrow morning. Thirteen hours of driving - but I will probably be up at 2:00 AM anyway because The Headache will INSIST.

I found a lovely picture of Cleveland on the internet and am using it to illustrate why I probably won't be blogging for a few days (unless I have the patience to blog in the lobby of the hotel at the communal PC). Luckily I had enought Marriott points to get a couple of nights free just outside Cleveland proper. Yeah, traveling too much does have an advantage! That's about $400 in hotel room cost I am saving.

My initial enthusiasm for going has waned because last Friday was a reminder of how bad this headache can get. I fear being caught somewhere without any means to get to an ER or Urgent Care AND get back. Have had this issue before - if you drive yourself your options are extremely limited for pain relief. Hopefully with yesterday and today being my "bad" days for the week - I am OK until Saturday/Sunday.

Sunday, February 1, 2009

Going to Wal-Martez

Dogs and Cats are Hungry

My animals are out of their "soft" food, so to the Wal-Mart Supercenter I go! This is the only location (not any of my grocery stores I go to have them) where I can buy Dingo brand dog bones for Augie. He gets one a night, and crys if I don't have them. He doesn't necessarily eat them - he just likes to hide them in new places.

Yesterday it was wet (he hates the wet more than the cold) and I had to watch him because he becomes his alter ego Augister Von Hidenpooper, and tries to hide to poop in the house. Yuck! But he knew I was on to his tricks and reluctantly trundled his butt outdoors to make the questionmark tail. Wilsy and Bingo are just fine with the weather but Augie doesn't like to get his feet wet!

The Belly has ruled the last couple of days since The Headache was getting all the attention. It's a lot easier to appease than The Headache! I know that the toradol injections are just as bad for The Belly as the indomethacin, but I don't know what else to do. A lady who has the same headache condition recommended trying to change my sleep habits (sleep sitting up, or on my left side and get up at the same time, no naps) and lower the carbs. I will give it a go!

Today I am better - I feel like braving the crowds at local supercenter to hear Buenos Dias Wal-martez customers! Yeah! Wal-Mart abundance awaits!