Tuesday, March 31, 2009

Bad Headache Day #23 2009

I Am Now Officially Fifty Years Old

Bad day today (I guess by now that is yesterday). I was able to stick out about five hours of work, and make it home but despite best efforts The Headache is winning this evening. I knew it was not a good thing this morning because my left eye was tearing and the left side of my nose was running (where it was running to I don't really know - it can't go far without the right side of my nose).

I am trying to stick it out - have an important meeting at 10:00 this morning. Can't sedate too much or I won't make it. It's past midnight and the thunder is sounding ominous. Since I live in Tornado Alley this is another reason to be awake besides The Headache.

Had to run to my primary care physician's office today. Apparently the stimulator study sponsor needs verification that my Type II diabetes is under control, or I'm out of the study. The study coordinator at Cleveland Clinic called them, and I needed to sign a release of information form so they could fax them a letter stating that this is well-controlled. My fasting blood sugar (with diet and medication) is generally a 94 - which is normal. My PCP and his staff are fantastic, always willing to help. Of course my medical record there is about three inches thick because I'm broken, and OF COURSE don't have an extended warranty for replacement parts.

My boss gave me two beautifully framed photos for my office space yesterday. They are lovely. One is of a large waterfall in Oregon I believe, and the other is of Glacier National Park. He has a natural eye for composition and great photographic skills. I have hung them already, and that has enhanced the office space considerably. I brought a lamp so I can turn off the overhead fluorescents but brought the wrong bulbs - it takes chandelier bulbs. Sigh. Should be a nice soft light though.

I gave up and filed some short term disability paperwork today. Incomewise I am making what I did in 1987 because I just can't work the hours. Per hour my pay is great, but I have to work enough hours! My bosses are wonderful, have kept me a full benefits so far, and have had such patience waiting on The Headache to be cured. I asked them that for the upcoming install give me a couple of day's notice before I need to travel (the site is only a few hours away) so I can try to get a shot of torradol to tide me over onsite. I don't think I will be buzzing away with an occipital stimulator before I will have to be doing site surveys, etc...

Monday, March 30, 2009

Ouch! Doh!!!

My Head Hurts

I know I whine about it a lot. I know it dominates my every day. But my head hurts - a lot. Last night - don't know if it was just because it was the third day after a bad day, or because I did housework - The Headache started to ratchet up.

When I say ratchet I mean like "CRANK" up goes the pain, wait a moment, "CRANK" up goes the pain, wait a moment, "CRANK" up goes the pain. In the matter of minutes (its like going 0=120 mph in a race car) The Headache gets up to speed and won't slow down. I was able to medicate with Benedryl and Phenergan and it has stopped at about a high eight on my personal pain scale. I can function up to a nine, but that's not far to go. My pain scale is like the Richter scale - the higher the number the more exponentially severe the pain is - sorta like redoubling on every level.

Cluster headache sufferers talk about the Kip Pain scale, which is similar. I'm not suicidal but when I am at a 10, I almost go into shock the pain is so bad. I start shaking, my arms and legs go whacky, and my body temp drops for hours. I don't make sense, and can barely talk. My extremities are like ice for a day or two. I wonder if everyone else with this type of pain has the same problem feeling cold. Of course maybe the simple explanation is that when I am at a 10, I end up in the ER with an cold bag of IV liquids being pumped into me.

Today we haave a meeting this afternoon at work. I will leave in a little bit so I can go, and I have another meeting tomorrwo at 10:00 am. I hope to hold at this 8 level for today and tomorrow. It may be too much to hope for, since I am not staying home today with my head wrapped in ice.

Sunday, March 29, 2009

My Computer Has Bugs

The untimely winter weather yesterday and last night has driven the local ants into my sunroom (which is a built in porch really). They seemed to like the warmth of my computer, so now I have borax scattered everywhere in order to dissuade them from their toasty new digs.

The Headache didn't like the storm coming in Friday, but yesterday and today have been pretty good. I didn't do much of anything yesterday on purpose, so I could clean some of the house today. Sweeping floors, mopping, and cleaning bathrooms....maybe even vacuuming and dusting and polishing!!! I also shook out throw rugs. Such a beautiful day after two unseasonally cold days.

I wish that I had more energy. I need to work on gardens and get ready for spring flowers. The promise of the occipital stimulator seems distant and far away this week. Times like this when I normally could go out a do what I want physically make me feel deprived. I know there are people out there struggling with much worse ailments - my brother-in-law who is in year two of recovery from a massive stroke is one of them - but I'm inpatient to get my life back on track.

Work has an install coming up, and that can be quite challenging when I am feeling well. I'm just going to have to suck it up and medicate the best I can. Last summer when I traveled for a week was agony - but I also drank a glass of white wine (as a spritzer) when we went with the client out for a nice meal. I was actually miserable the night before - so not sure if the wine was at fault or I was just on the downside of my headache cycle. The night I got back, I ended up at the ER again. I hope that I can avoid that - the ER copay makes it an expensive foray for me to go onsite.

Thursday, March 26, 2009

A Thing of Beauty

Parrothead's Unite!

My niece sent me a wonderful birthday present. We have a tradition of sending from time to time "ugly gifts" just to make us laugh. The gift needs to be silly and/or ugly and cheap. The gift needs to be something you would never ever want in your own home. Sometimes the ugly gifts mysteriously show up via the postal service at someone else's house just to spread the joy by regifting. This year I have been graced with a parrothead pot or vase. The hunt by the giver is made joyous upon finding the perfect ugly gift! Once in a great while the recipient becomes very attached to a gift and it never finds a new home. This one may be it for me.

The parrot looks a little bit like it has a headache too! Maybe I'll plant some "lucky bamboo" in its head so it can sprout a topknot. The possibilities are endless.

Today The Headache and The Belly are behaving. Maybe it's the parrot mojo working. I was able to work a few hours and actually get some things done. Hoping for a great tomorrow also!! The overhead lights at work didn't bother me so much today, so I guess it was The Headache creating the light sensitivity the other day.

Wednesday, March 25, 2009

Bad Headache Day #22 2009

This Evening is Better

The Headache had me down and out yesterday and part of today. I think I am going back to the old pattern of a bad time every three to four days. I hoped that the three weeks I had without The Headache being really bad was a sign of things to come, but unfortunately that has not turned out so. Not able to go to work yesterday or today, hoping for two full days Thursday and Friday! I have things to do and The Headache is interfering with my plans.

One good thing, with The Belly being so particular I have lost 10 pounds in the last month. Of course, not eating very much should have that reaction from a belly like mine! I am almost down to where I was before I was on prednisone last year.

The headache diary is being kept up. I return to Cleveland on April 15th. I am trying to find a flight that leaves out of the local airport that doesn't cost extra thousands of dollars. Driving hours to an airport was just too tiring. I checked out train rides, but they all would be overnighters - no good for me.

Monday, March 23, 2009

Too Much Light

The New Office

Settled into the new office today. Unfortunately for a small room there are three large fluorescent lights in the ceiling. The upper walls are whitish and the room is filled with reflected light - which would be great if I wasn't so durned light sensitive.

I'm gonna look around out in the garage and see if I can find some incandescent lighting I can set up and turn the ceiling lights off. If I can't find any, I'm getting the ladder out at work and removing bulbs, or else I am going to have to get those wooden eye things with slits like the native Americans used 100 years ago near the arctic circle for snow blindness. Sunglasses were no help because the light is above and behind me. Aaargh!!! However, the desk is very comfortable and since I had them add a keyboard tray just the right height for short old me. Despite the snow like glare the quiet and warmth of the room was quite delightful.

My boss is going to search through his large collection of photograhs and print out some wall art for me. He has been a serious amateur photographer for years and has some wonderful photos. He has moved to digital photography pretty well completely but he has some high-priced equipment that has such high pixel counts you can't tell it from film photographs. He also has a photographer's eye for framing a photograph and the technical expertise to bring it off, so I am sure I will be pleased with anything he prints out.

A mild day headache-wise for most of the day. This evening it started to lump lump lump up a few notches, I think because I stopped to buy pet food on the way home. Somehow my two dogs (one large one small), my cat, and the two parakeets all ran out of food at the same time.....must be the moon sign.

I had better luck getting the headache diary to transmit. Yeah! I have to position it juuuust so next to the telephone receiver for it to work. I think I'm getting the hang of it now. I also completed the diary before 8:00 pm - my goal is to do it between 7:30 pm and 8:00 pm.

Sunday, March 22, 2009

Calm Waters Tonight

Finally My Head is Shrinking

The Headache is here but it is more distant and smooth, like evening ripples on a summer pond. I hurt elsewhere but The Headache is behaving tonight.

My headache diary was touchy to transmit again tonight - took three trys to get the silly thing to answer the siren call of the telephone. I almost forgot to even fill it out - I must make it a ritual to do at a certain time of day or I will forget and be non-compliant. I must be compliant in order to qualify. I do hope I have enough "headache days" to qualify. Not quite sure what the study sponsors consider a "headache day".... all of my days are headache days!

Tomorrow I will need to tackle Anthem again. I did a successful appeal of some ambulance bills from last year, and Anthem was to readjudicate these NOT using the "usual and customary" rate. The ambulance service which is non-participating with Anthem refused to accept the contractual write-off from these bills.

This is how modern medical billing works: If I had NO insurance, the ambulance service would automatically write off 20% of the bill. If I had their hospital system's insurance they sell, or another participating insurance they would have accepted the portion the insurance paid and written off the rest to contractual allowance. Since I have Anthem (with whom this hospital system has a long standing fight [pissing match] with) I was told I was responsible for 100% of the ambulance bill - worse than if I had no insurance at all! Their billers actually told me they didn't even want the partial payment, that I had to appeal. I won the appeal, and supposedly this was re-adjudicated but got paperwork from the ambulance service: apparently it is not resolved.

Anthem called me last Wednesday about the PET scan pre-certification problem. A lady named Coleen called just to make sure I knew I could appeal the pre-certification denial. I told her that I knew this, and complained again about their swellheaded contract physician who tried to advise my doctors on my care. That physician's job was to deny (and upon rare occassion approve) peer-to-peer review of service denial issues based on medical policy. He or she stepped beyond the bounds when he/she started dispensing opinions concerning my care.

Coleen wanted to make sure I understood they had a medical policy concerning PET scans. I am sure by their medical policy very few persons qualify for PET scans. I reminded her that policies are just that - guidelines to follow (generally to save the insurance company money) and that there are circumstances where policy is meant to bend, and by no means was I pleased that a physician who had never seen me, who obviously had not reviewed my medical record, and was not familiar with my case at all, was trying to dictate treatment instead of just administering a policy. Competency thy name is NOT Anthem. I am sure they have messed this up, or Coleen would not have called. I doubt it is standard procedure to call a subscriber especially to urge them to appeal a decision just made the prior day.

My personal opinion is that when the Blue Cross Blue Shields (WellPoint and Anthem aren't the only ones) starting going public and for profit their focus shifted from providing the best coverage at a reasonable cost to quarterly returns and stock price (which of course is what upper management likes to measure because they have a direct influence on their own stock options and bonuses). Too much managment focus on nest feathering and too little concern for their employees, quality, and their subscribers have changed the perception of excellence the Blues once stood for.

Ah well, this is why I am obviously not cut out for higher eschelons of management. I have no patience for greed, and most corporations seem to assume that managers will operate out of self interest instead of the good of all. The incentives and initiatives I observed when I was management all were geared to appeal to shortsightedness and personal gain. This current financial mess the world is in is because of this sort of business philosophy and everyone having his/her hand in someone else's backpocket.

I guess I'm done being gripey tonight. Tomorrow is another day! Hey, at least I'm not just droning on about how my head hurts tonight!

Day 4 of Headache Diary

Reminder: Don't transmit right at 8:00

Last night I had a little trouble transmitting. The receiving number was plaintively calling, calling, calling - like an old man clearing his throat - chluuuh chluuuuh chluuuh chluuuh. On the fourth try I got the diary to respond - chirping its message over the phone lines. Very frustrating - I suppose they are trying to hit a norm on non-technological people, but it seems a little touchy to me. I would prefer just a regular modem connection if that is all they can do.

The palm pilot kept trying to issue an alarm at 8 PM even though I had filled out the diary and saved it for the day. I filled it out again and saved it - hoping that their protocol is to save over and over the same day's data or else I just transmitted 2 days when I should have done one. I guess they will sort it out at the other end. I won't try transmitting at that time of day any more.

The Headache has been bad yesterday and today. I know that traipsing around galvanting across airports has aggravated it. The Belly was in revolt yesterday also. I had received a voice mail while I was gone asking me to reschedule my appointment at the Cleveland Clinic earlier in the day because of an appointment conflict. I have no idea if it was for last week's appointment for which it was too late or for next month's. I will leave a voice mail Monday.

My head is like a champagne cork ready to pop off the bottle today. Sigh.

Friday, March 20, 2009

Home Again

I Now Have the Official Palm Pilot Diary

This whole study thing is so iffy. I am expending a lot of my own time and money and still won't know if I qualify for an occipital stimulator for another month. I'm just tired of being in pain. You would have to be at the point of desperation to put up with the paperwork! I felt for the study coordinator and the amount of paperwork she had to do and I am sure I am only seeing the tip of the study paperwork pyramid.

I believe the doctor I saw is thinking I have a chronic or transformed migraine instead of hemicrania continua. Well, I've had so many diagnosis in the last year about this durn headache that it could be anything. I had uncontrolled migraines from 1975 to 2004 - so that would be almost 30 years of migraines creating burning pain pathways in my brain.

I have filled out my first two day's of headache diary entries and transmitted them. It was very easy. The last two days have not been pleasant. Excercise seems to set The Headache romping, and after fooling around a couple of airports and a huge healthcare complex The Headache made itself known. And also eight hours of driving!!

I think I must have started to tolerate the medium high levels of pain better or am losing awareness how bad the pain is because it is consistently bad. Perhaps that has been behind my seeming three week improvement that ended this week. My blood pressure is indicating higher levels of pain than I am noticing. But really, how do you compare always bad today to always bad tomorrow? When everything is equally bad contrasts are lost. Maybe the headache diary will assist me in differentiating pain levels.

In two days my messages on my home phone are full. I will need to listen to them soon but am too tired tonight.

I'm not sure that driving four hours and then flying there, flying back and driving four hours home is the answer. Driving thirteen hours was hard also. I will keep looking for cheap affordable fares where I won't have to drive. Maybe Amtrak??

The pelvic pain was so bad this morning (I have problems standing in lines dragging suitcases with me as in going through airport security) that I asked for a pre-boarding disability pass because I couldn't stand for the 15 minutes or so it takes to stand in line and board the plane, and I didn't think I could tromp very far down the aisle on the airplane. My legs were giving out on me.

Hoping for a better tomorrow!!!

Thursday, March 19, 2009

On the Way to Cleveland in pursuit of ONS

Wish me well

The Headache has subsided a bit. Have some pain killers for the plane if things get out of hand - per my doc ask 'em for a hit of the strongest whisky they have and take one of these with it! :) I think if I have to take one I will skip the whisky. I will probably nauseous enough without airplane liquor on top of it.

He also gave me a couple of days of prednisone The Headache is behaving itself. Yeah!!!

Wednesday, March 18, 2009

Bad Headache #21 2009

No Pet Scan

My day yesterday started off just fine, got to the PET scan facility, and waited and waited and waited. I had noticed the note "need pre-approval" on my paperwork I signed at the door. Apparently my doctors office forgot to get insurance pre-approval for the PET scan. Getting the pre-approval took so long the PET scan got canceled, and then found that Anthem Blue Cross Blue Sheild denied the the PET scan after going to my oncologists office. The Anthem Blue Cross Blue Shield doctor in his infinite wisdom told my onocologist that I couldn't be allergic to all contrasts and I needed to see an immunologist/allergist. Since he had not bothered to look at my extensive Anthem Blue Cross Blue Shield medical record before he refused the service, he didn't notice that I have been to an immunologist/allergist and that I have a "mast cell disorder" that became evident as I started having anaphylactic or anaphylactiod reactions to various medications and all CT, MRI, ERCP, IVP contrast materials that use mast cell reactions for contrast (pre-medicated or not) and the documented recommendation by the last radaiologist who had to deal with one of these saying "only on the threat of end of life" should I have contrast. So now I wait. I told the oncology group I didn't care if I had a PET scan or not, I needed to find out - but now they are going to appeal (another at least two weeks). They must have bought interest in the PET machine so they have to use it! :) I hate insurance company folderol, I used to be a manager for a BCBS so I know its all folderol. Anthem has a especially bad reputation for refusal of services but they bought out the local BCBS so there we are.

I then went to work, and the boss had decided to "shake things up a bit" by rearranging our decidedly unworkable work areas. Yeah for me I get a private office area!!! Boo because everyone else gets moved to communal work areas, including the guy who had my new office. I know it is because we are ramping up to a new platform, and I am supporting the old platform. Life moves on - but since I won't be here for moving day, I packed up my desk so someone else would not have to.

Maybe that's what set The Headache off. In spite of the goof with Anthem (bless their stingy hearts while they outsource American jobs to the Phillipines) I was in a pretty good mood yesterday, but I know that physical activity can set me off, and boy did it!

I left work at around 4:00 pm because The Headache was pounding, but I thought I could make it home. Nuh uh - I was halfway through town when The Headache pounced, ramping up to full glory in four quick throbs. I drove myself to the ermergency room, and I'm not quite sure how I got there. The pain was so severe, I debated pulling over and call 911 but remembering where I live I thought it would be quicker to drive to the ER, which was 30 minutes crosstown. I was at the "Oh God Oh God Oh God" level of pain and threw up all over the interior of the car just a block from the ER. I was in bad enough pain and unfortunately looked bad enough that the other ER patients waiting in line to sign up parted like the Red Sea for Moses. One sweet lady actually told the ER clerk that I needed to be seen first. At this point I was in such pain that my arms were shaking and my legs were starting to go and tears were dripping down from my bad headache eye.

Generally at this point I am at home where I am not under the observation of others. I have trouble talking and thinking when The Headache is at full pain. I have been hoping that The Headache had lightened up, but no deal. This was The Headache telling me I was a fool! Bless the emergency room people they got me back to triage and then to a room, but it was another 30 minutes (at least it seemed like it) until they got medication to me. They tried oxygen through a cannula because they thought it might help the pain, but it was too little too late. Then I had a headache cocktail of phenergan, Benedryl, torradol, and fentanyl. This allowed me to lay still, but the pain kept pounding on, just a little under the maximum. I think that is when the doctor came in and asked me what else they could do (this aggravates me somewhat - I know they don't see a lot of people with hemicrania continua - probably none - but I am in such pain when The Headache peaks out I can't think). I beleive we decided in consensus for some solu-medrol and more fentanyl. This brought The Headache down below a nine on my personal pain scale, and dropped my blood pressure a little. At least I could think! And I had some self countrol - not rolling around in pain for all to see!

My brother got a friend (thank you Bean!) to drive him to Springfield to pick me up, and drive me back home in the vomit car. I was discharged from the ER at 7:00pm and I slept off and on most of last night and have gotten up this morning early because The Headache is at the bruised brain stage. It hurts to look out of my left eye, it hurts to move my head, and it hurts to think. I have a meeting this morning at 10:00 that I need to attend and I am hoping I can make it.

I am thinking of getting a MD visit with my personal physician this afternoon and seeing if I can get a couple of extremely strong pain pills to carry with me. With the nausea issues, I'm not sure if I would be able to keep them down, but I fear being in places I can't get to medical care in (such as airplanes) when I am get in such pain so quickly.

Sigh. I think The Headache is up to its old tricks, two bad headaches in a few days, one off the scale. Guess I am glad I passed the psych eval.
Oh, and by the way, artwork that I use that is derived from someone else I generally (if The Headache is cooperating) put a link on the artwork to where I found it. So just click on the artwork if you want to see in original context.

Monday, March 16, 2009

Cleveland Clinic Appointment Confirmed

Spring has Sprung & I'm Psychologically Sound

Got voice mail today that verified I passed the psychiatric exam and my appointment for this Thursday in Cleveland is confirmed. I have mixed emotions - glad that I am eligible, but dreading the next month because until I meet the documentation and frequency guidelines I won't be eligible for the trial occipital stimulator. A month can be a long time with The Headache bopping around.

Sigh...I am facing more travel - this will be the first airplane trip I have taken since The Headache took hold. I hope it will behave on the flights. I have a fear of being in a situation where I cannot get privacy and being in terrible pain. It has happened to me several times in the last year especially prior to receiving indomethacin. I wish that The Belly liked the indomethacin, life would be so much easier.

I have my PET scan tomorrow. I'm trying to remain upbeat but today has been a shadow of yesterday - much nausea and dizziness. Hoping tomorrow will be better! And hoping The Headache behaves because my understanding is that I have to remain still while allowing the dispensation of the nuclear tinged glucose in my system, and to remain still during the scan.

My forsythia bushes are blooming, there are robins everywhere, and the neighbor's jonquils and daffodils are blooming. I believe spring has arrived!

Sunday, March 15, 2009

Bad Headache Day #20 2009

Tussling with the Toilet

Ah, the blessings of unrelieved nausea along with a bad headache...despite taking anti-nausea medication The Headache coerced The Belly and they led a revolt today. I spent a time this evening toasting the toilet with The Belly's blessings and The Headache's handiwork. Projectile vomiting is my speciality when The Headache gets to a certain place. EwwwwYuck!

The Headache got pretty ouchy but nothing I couldn't handle this time. I did pack my head and neck in ice and ended up napping on a ice pack which did help. At least this time the pain only escalated so far and stopped. In the past I have been caught at this juncture and the pain would continue to escalate with no end in sight. I can't tell if the intensity of The Headache is less, or I have just grown more enured to the pain.

The picture of a toilet is one I wish I had - my bathroom is overdue for a major remodel - it is a PINK bathroom, with a PINK toilet and PINK sink and PINK bathtub and PINK tiles and I don't like PINK!! I tried to tone it down using a complementary color (green) but it just seemed to make the PINK more PINK in appearance. Maybe just walking into the pinkness that is my bathroom could be causing the nausea!

Saturday, March 14, 2009

I'm So Dizzy

My Head is Spinning and I have Jimmy Legs

Dizzy Dizzy Dizzy this evening. Nausea and dizziness are keeping me up tonight. Not sure if it's The Belly acting up, or The Headache being tricky, or the medication for The Legs. I've taken anti nausea medication today and it's not working, so I may have to try a different one tomorrow.

I am guessing it is a go for my appointment next week with Cleveland Clinic. I left voice mail with the study coordinator to see if my psychiatric test had been scored and evaluated by the study committee yet. I received no voice mail today, so either there is no news or the coordinator didn't come into work.

I worked a partial day today, and it was very productive. My poor bosses - wages and benefits are two major expenses for their company, and last year insurance rates increased 28% and this year the rates increased 18%. I believe in my state, an insurance commission sets the maximum percentage they can charge on an increase. I don't think my bosses get that chance to say to our clients - we are going to raise your rates by almost 50% in two years because the state says we can. I hope they don't discontinue the insurance we have because for me that would be a major undertaking to change all my doctors. I have no control over this, I worry because I may have to make an employment decision over benefits. I used to work for the hospital system that I utilize now, and I suppose I could try to work for them again, but I love my current job - hope there is no reason for me to try to move jobs at this time. I truly enjoy my work and believe in the company and what we do, and I really like all the people I work with. Haven't always been able to say that in larger firms.

I've had the "jimmy legs" all day. Probably means I am having more pain than I am realizing. Sometimes it makes it impossible to keep the legs still. I've sat with my heating pads on this evening, but I still feel cold even tho the house temperature is 81 degrees farenheit - plenty warm!

Get this Seinpost

Thursday, March 12, 2009

Bad Headache Day #19 2009

Sleeping it off

Spent most of the day with my friends Benedryl and Phenergan. The Headache was especially bad this morning, and I didn't know if the B & P combination was going to get the job done, but I did manage to knock myself out. The nausea was especially bad, as I had woken up with The Headache in full bloom.

I hope that tomorrow will bring better things. Today has been a bust. I have managed to escape going to the ER or Urgent Care, which is an improvement. My hair even hurts tonight and the skin on my scalp is very painful.

No word yet from the Cleveland Clinic to see if I have passed my psych test. By now I'm getting psyched out that I may have inexplicitly failed it. I'm anxious to get this show on the road and start the process of getting a stimulator implanted. Very tired tonight in spite of sleeping most of the day away.

Wednesday, March 11, 2009

Pet Scan Anxiety

Tests Tests yet More Tests

Had an appointment today with the gynecological oncology group (boy that's a mouthful!) as a consult from my doctor appointment last week. I am now scheduled for a PET scan next Tuesday to check to make sure my pain is not from a cancer recurrance. If it is I will be surprised, but I think anyone who has had cancer dreads each time you get rechecked or have more tests run because it can mean the undying cells have reappeared. I am considered at fairly high risk for distant metastases because of the depth of the cancer invasion (into the deeper vascular/lymphatic tissue of the uterus) and the histology of the cells. I am dreading the scan somewhat because it is one of those types where you have to lay still for at least an hour and a half, and if The Headache makes itself known that day it will be very difficult.

Other news from the gyno onco which was no surprise to me - they stated if the health issues I am having with neuropathic pain and dysfunction are because of chronic radiation damage there is nothing anyone can do, and it will just progress. I do show more signs of radiation changes in other tissues so that seems to concur with nerve damage due to radiation.

Up side if the problems are due to recurrent cancer there are probably steps to take, down side if the problems are not due to recurrent cancer there is nothing I can do. Up side if the problems are due to radiation and not cancer I will most probably be cancer free for the next five years also, then declared cured!! Down side if the problems are not due to radiation and are recurrent cancer there are very few treatment options for recurrent endometrial cancer and they have limited efficacy.
Having to take much trammadol this evening because of course poking around on me started the nerve pain to increase again. You tell a doctor it hurts somewhere and then they poke you there and of course it hurts, and then they say I'm sorry - but no, they are not. They deliberately poke you in your sore spot(s) just to see if it really hurts.

My blood pressure is still elevated due to pain. At this point I can't tell if it is from the hemicrania continua (which pitched a fit this afternoon) or the pelvic pain or both. Most probably both. There have just been a few times (after injections of major pain killers) this last year and a half where my BP has been normal. One neurologist said he could see changes starting in the vascular part of my eyes from elevated BP. Just one more broken part in the junk heap that is my body...

The Belly and The Headache are vying for my attention this evening. I had the shakes from not eating so had to feed The Belly and it was not grateful. The burning ouchiness is being helped by the trammadol I took for the pelvic pain, so a benefit there! The Headache started surging this morning with big lumps of pain, so I only worked a few hours today. I updated some records for a client so they were productive hours, but I went home early and just crashed on the couch in the living room.

I think some of the improvement I have been having with The Headache is from some advice I got from a fellow Hemicrania Continua sufferer: sleeping sitting up and sleeping on the side The Headache is on. I don't do it every night, and I don't sleep entirely sitting up, but in a semi reclining position, but I do believe it has been of benefit. Thank heavens I have a memory foam couch that is very comfortable.

Tuesday, March 10, 2009

Sledgehammers Keep Rappin' at my Head

No Bad Headache Days for Awhile

I haven't had a devastating day in the last couple of weeks. Not sure if something is wrong with me or right with me! Tonight the sledgehammers are striking out the Anvil Chorus on my head, but it is in the bearable level so far.

Dim (thunk) Dim (thunk) Dim de (thunk) de (thunk) de dum de dooooora (thunk) -

I think this dude is the one doing the head thumpin'. He's been knocking on my noggin for a few hours today and I have kept him at a distance so far, but I think he's gone up to a heavier maul. The VIP's have come and gone from work, and with my brain on vibrate I'm glad that I didn't end up having to explain our project management process today. As I suspected, other segments ran long and my performance was not needed. I coordinated some other problems for a couple of clients so I felt useful anyway. I stuck out the whole day even with the headache working on me, but I have a programming project I have been wanting to tackle the last two days, and The Headache is not cooperating.

One of my coworkers is going to tackle a small conversion problem tomorrow and I want to be there to support - I had written all the needed formulas in Excel and hopefully wrote some coherent instructions to parse the data into the new table columns, but it was months ago and the haze of The Headache is between my surely brilliant spreadsheet composition and now!

The Headache is making my thinking fuzzy lately - I wish it would stop that. My thunker has thunked all it can thunk and needs a break.

Monday, March 9, 2009

Clean Up Day at Work

My Sweet Patootie Augie

Had a long day at work - for me!!! Didn't get a lot of work done because it was "clean up day" but many of my doodads got repurposed by some folks at work, so I have less to dust and some coworker's grandkids and charities now have the benefit of my collections. I love to repurpose!

Tomorrow we will have VIP visitors so I will dress up from business casual to business. I may have to go over our project management protocols with our new partners. There is an extensive agenda, but we are a free-wheeling bunch of galoots so I'm not sure where or when I will be needed...unlike my last job, where you had your agenda timed out to the minute, and the conference rooms were booked for every working hour. The freedom of being released from meeting hell was one of the main draws of this position, and after working here there were even more positives to add to the list!!

The Headache is being good this evening, but The Belly is not my friend. I fed it something this evening and it was just a little too much.

My puppy Augie was being a cutey this evening. He's been a blessing to me this last few years, and he was on his best behavior tonight because I gave him a taste of supper. Definitely my sweet patootie!

Thinking of old friends this evening. Kinda nostalgic - not that way very often, I tend not to ponder over the past. We're all getting old, me quicker that the rest if you can go by hair color!

Sunday, March 8, 2009

Post Radiation Neuralgia

Pelvic Pain

I should have know yesterday was too good to last. The Headache is normal intensity today, and The Belly is feeling pretty good because it doesn't have to grind on food at the moment, but the nerves in my saddle region are on fire. I actually woke up from deep sleep whimpering and curled in a ball from the pain.

This pain is almost impossible to describe because it is inside riding right along the pelvic arch. I think it is acting up because the doctor was punching around on me the other day. The pain is mostly a background issue for me, but once in a while it flares up into pure lava flow agony. I am taking maximum trammadol today, and it's making a minimal dent. If it keeps up I may have to go get some muscle relaxers - that generally stops the leg issues.

I have found I can't stand for long since the radiation therapy five years ago, and I probably shouldn't have pranced around Wal-Mart with my shopping cart full of heavy items, and then gone home and cleaned. I did manage to finish my mopping this morning, but it isn't as complete as I wanted.

I am sure my two 13 hour driving days to Cleveland last month didn't help me with this issue, but travelling by plane is such a problem for me because of the security lines. Driving isn't too great, but I can take breaks when I need to and I use the cruise control as much as possible.

I'm just going to go lay down and curl into a ball - that removes the tension on my sciatic nerves. The physical therapist I had a few years ago said that she felt from her evaluation that I have scarring of the dura layer of my lower spine tethering the nerve roots in the sacral area from the radiation. Just one more broken bit because my warranty expired at 40, and I don't have an extended package.

Saturday, March 7, 2009

A Lovely Clean Floor

Mopping Away

Feeling on the up side today! Went to the great WallyWorld for my monthly cleaning materials and pet food shopping. Had enough energy to start cleaning the bathrooms and to start mopping floors. I will finish tomorrow.

The Headache is behaving itself today and I am very happy that it is cooperating for once. I keep saying maybe I am on the mend. The intensity is much less today than it has been in the past.

I keep hoping and wishing that The Headache will just disappear. The Belly is being a good belly today because I'm just not feeding it much so it has sort of disappeared. I am so so sooo ready for this ordeal to be OVER!

Friday, March 6, 2009

Exam Gown Beauty

5 Years Post Cancer Post Hysterectomy

Had my annual check up today, which included putting on a beautiful (not) exam gown. I don't know who designs those things but my elbows aren't double jointed and I never can get the middle back tied.

My doctor suggested that I see the gynocological oncologist again for the post-radiation issues I have, which are probably nerve damage from the HDR brachytherapy and possibly the pelvic radiation. He said that the nerve problems (if due to radiation) would be progressive, and the oncologist might have more suggestions on how to treat what probably be a life long problem. The nerve damage creates quite a bit of pain when standing or walking for long periods of time. With The Headache it makes exercising very difficult for me.

I went to work today after my MD appointment, but only lasted a couple of hours. The Headache kept pounding away and all I could think of was The Headache and I didn't want to draw pay for doing nothing which was all I was capable of.

I have problems driving when The Headache tries to take control. For some reason I get disoriented, miss turn offs, go the wrong direction, etc. This afternoon it was an issue, but I got home eventually. I'm having a hard time writing this evening/morning because I can't carry a thought through to a conclusion. I've been at this for about 3 hours to write just these few paragraphs. I stared at 11 PM and it now is almost 2 in the morning.

Wow, I just remembered I was going to take a long bath to get my leg and lower back pain to let up. I had turned off the water to go and write this - allowing the water to cool down a little - I'll bet its too cold now! Duh....

Thursday, March 5, 2009

Sleep That Knits the Raveled Sleeve of Care

My Brain Hurts

Not only do I have The Headache but today my brain is too big for my skull. I would love for The Headache to run away and shrink my brain back to the correct peanut size for the bone density. Nothing today is helping and I'm too tired from lack of sleep to want to go sit for hours in some doctor/urgent care/emergency setting. Perhaps I could hire a Viking to just split my skull and let the brain just sorta bubble out of the left side....If only I knew a Viking with an axe.

No work today. I had such a good week going!!! I pray The Headache does not get worse.

Four O Clock in the Morning

No Sleep Tonight...

Perhaps I overdid the tea today. Despite the medication I have taken I have not been able to sleep tonight. Not one wink. I generally nap all evening also pretending to watch TV, nada - nothing. The Headache is everpresent but is just gradually increasing instead of exponentially increasing, at least I think so. I'm not sure how much I trust my ability to judge The Headache at this point.

Caffeine is a happy thing for me. I don't intake a lot of it, so when I do binge like I did today I get all happy and zoommy - zoom around - whip whip whip get things done! Actually how much caffeine I drank today is debatable. I had about 5 cups of white and green tea, where I usually one have one or two cups if any. It could have been the precursor for tonight...I wonder if bad weather is coming my way??

I had some loose leaf green tea, loose leaf jasmine green tea which has jasmine blossoms in it, a Japanese green tea called ban cha, a jasmine white tea, and a green and white tea mix. I don't brew these strong, so I know that I had a lot less caffeine than someone who drank 5 cups of coffee! One of my favorite black teas is Lapsang Souchong which has a strong smokey flavor to it, but I'm out of it. The ban cha has a light smokey flavor to it which reminds me of it.

Wednesday, March 4, 2009

Heading Down the Headache Highway

Bumpy Road Ahead!

The Headache is worse tonight, has been bumping along since late afternoon. It's 10 PM and I'm not sure how much sleep I will have tonight. I've been drinking white tea all day, the mild caffeine buzz has made me so happy, happy, happy, quick quick quick, but hasn't helped The Headache at all.

For years I could stoke up on the caffeine and delay a migraine for several days. I never could stop the migraine, but I could almost always push it from say 10:am in the morning to 8:oo pm in the evening, and sometimes from a Wednesday where I would miss work to a Saturday. Naproxen and caffeine - worked as well as any prescription medication I was given. So at least once a month I try to caffeine myself up with this durn hemicrania continua, and it does nothing for the headache. Not sure why I keep trying, but when The Headache starts lumpin' along making its presence felt I think I just hope it is the old migraine problem coming back.

Had fun at work today, actually felt marginally useful until mid-afternoon when The Headace upped the ante. I got absorbed in a project and forgot to take my indomethacin directly at noon. I think that riled it a little bit more. I had a great long phone conversation with my sister tonight which distracted me a great deal, but the thinker switch is set to OFF so I hope I made sense.

My left eye has been poking me with the icepick of pain, which has now turned into the throbbing temple of doom. Sounds like an Indiana Jones movie!! I've had a pretty good week so far, and I want it to continue and for The Headache to back down. Maybe I'll take some good old Benedryl and phenergan to see if The Headache will disappear during the night.

I have some more pancreatic enzymes sitting at the pharmacy waiting to be picked up to help with The Belly. I have a great GI doc that evens calls you personally in the evening if you are having issues. His staff is great too.

I have a cancer checkup on Friday. Hoping for the same great results I have had in the past. This is my fifth year post cancer (Endometrial cancer, Stage IC grade 2)...half way to where I can say I'm cured. Aflac will actually let me purchase cancer insurance after 5 years because they consider that cancer free. Yeah!!! I will only have to have one appointment a year instead of one every six months after August. It's nerve wracking: last year the radiology oncology nurse told me I was one of the few patients she had that had gone so many years without a recurrance. My cancer had invaded the lymphatic and blood vessel space so I was a fairly high risk for distant spread. None seen so far! Great surgeon, great radiation team.

Until I was 40 I did pretty good healthwise. I only saw a doctor a couple of times a year - maybe for a sore throat or an annual checkup. That's when my warranty expired - 40. Heading to the big 50 this year - hoping for a better 10 years healthwise than the last. I would like to quit thinking about it. Quit having appointment after appointment. Quit having to go to ER departments. Quit having to go to urgent care facilities. Be normal for a while....

I think I'm just whiney this evening because of The Headache. Going on a self-pity binge. Gotta head it off at the pass!!!! I only allow myself two days of self pity a year and I don't want to waste a day of good pity party time so early in the first quarter!!!

Not so good today

The Bongos are banging at my head

Going to work today, had a great last two days, today maybe not so good, but who knows where the day may take me? It only takes a little reprieve for my natural optimism to bubble to the top!!!

Monday, March 2, 2009

Eight Hours

At Last a GREAT DAY!!!

I was able to work a full eight hours today. Yeah!!! Woo Hoo!!! At last, it's been a few weeks! And it was a great productive day - plenty to keep busy with, just the kind of day I like. Also got to sit in on a class on Flex that one of the guys at work was giving. He was a very good teacher, and since I'm way way out of date using these types of tools (I developed some apps at my last two jobs with similar tools but not XML but that was SIX YEARS AGO an ice age when working with programming) I found it very interesting. We are having another session tomorrow morning, and I am hoping/praying that The Headache and The Belly behave tonight, as I really want to attend.

I rewrote some documentation that I thought I had written a couple of weeks ago. I was testing it last Friday but alas, we had made a wrong assumption and one of the reasons I love where I work: I met with my boss in charge of that product this morning, we discussed, we popped out a few possibilities, I checked with the customer, my boss changes and compiles and BANG we have it all fixed in just a couple of hours. Unfortunately, it meant a rewrite of the documentation but that's minor compared to the speed we got things done. That's the beauty of working for a small nimble company. I should finish the documentation by tomorrow noon.

The Headache is making itself known tonight and I have been ordered to put The Belly on the soft white squishy food diet - cream of rice and mashed yukon golds extremely low fat etc etc etc. Sigh, but at least The Belly got fed tonight. It's complaining and hurting, but better than last week. I'm afraid I may have to placate The Belly with some pain medication before I go to bed.

Sunday, March 1, 2009

Headache Hammers

Jackhammers of DOOM

I don't know if a change is coming in the weather, or I was just a little too active this evening. The Headache started getting more insistent about 7:00 PM. It's one of those nights where it lurches and reaches a level then lurches again. I think I have the jackhammers of doom pounding at my head!

I'm gonna reup my indomethacin to another 50 mg and if that doesn't do it another 50 in a couple of hours, back to the 200 mg per day. I was hoping to be able to decrease this as The Belly isn't happy at all. I guess I will quit eating instead of quit taking the indomethacin - it hurts a lot less!

A strange happening - my blog posting date and time has been stuck this last week. I just noticed (I will blame my laxity on the Jackhammers of DOOM run by OompaLoompas) and have had to go back and guestimate time and date. I wonder what could have done that???

A Good Day Wasted

Do Nuthin' Day

I have done a big lot of nothing today. The Headache appreciates it mightily. I have cut back on the indomethacin yesterday and today to 100 mg per day instead of 200 mg. The Headache still hurts but The Belly is feeling better.

I did bake a birthday cake for my brother's birthday, but that wasn't a lot of effort. I am not eating much which is helping The Belly also.

I dreamt last night about sleeping in bathtubs and woke up with my head jammed up against the headboard of my bed. No wonder!!!