Wednesday, September 30, 2009

Message from Dr. Gnome's Office

Do I get to Pay with Mushrooms?

Had a message on my answering maching from Dr. Gnome's office when I got home from work today. I'm to call, and I hope setup an appointment. I'll find out tomorrow. Wonder if Dr. Gnome rides a fox to work, or comes in by raven?

I think I'm a bit of a gnome myself, so perhaps I will get myself a big tall red hat and stand around the garden on the lookout for slugs, snails, and other varmints. I wonder if Smurfs are a variety of gnome or a creature unto themselves? I wouldn't mind being a Smurf either since they are such a lovely blue color and are just three apples high!

Kinda goofy this evening. The Belly is complaining but The Headache is behaving. Got quite a bit of work done today but have a lot more to do tomorrow. Having a hard time sitting still, but need to get to sleep!

Tuesday, September 29, 2009

ERCP Gnomes

Yet Another Specialist

Before The Headache, I had problems with pancreatitis. The problems started in 2006, got worse in 2007 and then I had a pancreatic and billiary sphincterotomy for papillary stenosis (Sphinter of Oddi Dysfunction Type I) done by ERCP in November 2007. I came out of that procedure with The Headache, but the pancreatitis seemed to resolve itself.

I was hospitalized this month for acute pancreatitis, and now am told I need to see the ERCP specialist again. This is my third bad flare up of pancreatitis in less than a year, and my second hospitalization, so I guess something needs to be done, but I'm not looking forward to another procedure. I was hoping the pancreas would calm down after I quit taking the indomethacin and the toradol, but no such luck. I'm not sure what can be done at this point. When I had the sphincterotomy I was told that 100% of these would need to be redone at some point. Just wondering if I have gotten to that point....

The ERCP specialist (nickname Dr. Gnome) is very well-respected and skilled. From the demerol drugged memories I have of him from 2007 he looked like a little yard gnome - apple cheeked, happy, with a cute little curl on his forhead. I was sitting way up in the air on a flouroscope table so he is also foreshortened in my memory, making him yard gnomishly small. He had a surgical hat on, not a big red pointy hat, which was a disapointment. I sure hope I didn't tell him how cute he was, but knowing me and demerol I'll bet I did! My brother told me that Dr. Gnome was not short at all, but I just can't get that image of him standing there in his fluoroscope apron with his tidy surgical garb on looking like he was about three feet tall, out of my head. He was soooooo cute!

Dr. Gnome's office is supposed to call my gastroenterologist's office to get this scheduled. The last time I went to see Dr. Gnome I thought it was just a consultation but nope, the next day I had the ERCP and pancreatic manometry and the sphincterotomy done. I wasn't prepared for that, but this time I am going to ask more questions about the appointment.

I'm not as down this week as last, have just a little more energy and not quite as exhausted. Wasn't able to work yesterday, but worked today, and hope to work a full day tomorrow and the rest of the week. I'm just sick and tired of being sick and tired.

The Headache is behaving itself so far this week, with every day having some painful jabbing spikes of pain, but overall pain levels are way way way down. Wishing I could say the same for The Belly.

Sunday, September 27, 2009


Puppy Power

My sister and her husband got a new puppy as a gift from my brother and his wife. Her name is Gracie and she is a Boston Terrier. My brother's family dog Chewie had just had a litter of new puppies, and the family wanted my sister and her husband to have the "pick" of the litter.

People get new pets every day, but what is extraordinary about Gracie is that my brother-in-law, who suffered a devastating stroke two years ago, rode four hours away to meet my brother's family and help pick out which puppy should be theirs. This is the first time he has made a trip of this length and the first time he has eaten at a restaurant since the stroke. He was so excited about going that he was able to overcome a lot of fears that have been almost as disabling as the stroke - fear of strange places because he can't see well, fear of falling in unfamiliar terrain, fear of pain from riding so long.

My brother-in-law seems to be talking more and is more animated just in the last day since Gracie came home. Gracie seems to be able to tell that his paralyzed side is more sensitive and sits quietly by his good foot, waiting to be picked up. He says she already likes to watch football with him. Their four cats are not so sure they like Gracie yet, but are keeping their distance and watching.

It is amazing what a difference a small little puppy can make. I hope this is a not a one shot try on traveling for my brother-in-law and my sister, and they will be able to take on a few challenges like riding to go visit his daughters and his grandchildren, and maybe an occassional outing to a restaurant. These may seem like insignificant freedoms but when you have been homebound for so long it opens up an entire world of possibilities.

So I'm saying "Goodnight Gracie!" to baby puppy and sending loving vibes her way, hoping she keeps muddlin' through!

Me and My Toilet

Quiet Saturday

Up late tonight, feeling very nauseous and have managed only to throw up once, but lying down makes it worse, which tells me it's not The Headache causing the nausea, but The Belly. I tried introducing some food today into my diet and think perhaps The Belly isn't really ready for food.

My friend The Toilet and I have been busy getting reacquainted this week. The Belly just is not cooperating with anything. I am very extremely tired, but because The Belly hurts worse when I lay down I am not getting much sleep.

The Headache calmed down and has been behaving its self. Which is good news, because The Belly and The Headache both at once at extreme levels of ouchiness was almost too much for me. I'm feeling down this weekend. I am so tired and I have been so excited that The Headache is semi-behaving itself and going back to work and then BAM something else happens. This is my eighth year of BAMtastic health, and I am worn out. I guess I should be thankful that I do not have fatal ailments or completely disabling conditions (although my family says I should give up and try for disability).

I just don't know how many more bizarre problems I can bear to have. One thing breaks after another. I feel like Einstein looking for the unified field theory - surely there must be one overriding ailment that is causing all of this, but there probably isn't. I fear that my health issues are becoming so complicated that they will become an impossible tangle of interwoven symptoms and treatments that just feed off of each other, and I will get caught in an even worse tangle of specialists than I have currently.

I've lost a bit of weight this week which is a bright spot when you can't eat anything. Fasting is one sure way to kick off a weight loss plan. Just 10 more pounds to lose before I get back to my pre-steroid pre-hemicrania continua weight. Yeah!

Thursday, September 24, 2009

Bad Headache Day #40 2009

Pancreatitis Attacks Again

Haven't been feeling too great since last week. I thought it was just overexertion, going to a client's location, flying to and from Cleveland, and still being able to do chores over the weekend. Monday I was feeling just kind of blah, and Tuesday started out that way too. By noon Tuesday I started having stomach spasms and by 2:30 I had to call it quits at work, and head down to urgent care.

I asked them to check my lipase levels because I had been having chest pain and back pain for several days in addition to the spasms I was having that day. Sure enough my lipase came back high - at least 4 times higher than my regular high lipase levels, and so what I thought would be a simple urgent care stop so I would know that it was or was not pancreatitis (if pancreatitis you go NPO [nothing orally], if indigestion you take something like prilosec and liquid Maalox) and know how to proceed. I didn't have a clue it was as high as it was. I went from urgent care directly to the hospital.

I don't drink alcohol, I don't smoke, I drink very little caffeine, I eat a low fat diet (for the most part) and I quit the medications that I thought were giving me pancreatitis. The Belly just decided it wanted attention because I have been very careful not to aggravate it. I wonder if the episode a few weeks ago where I went to the ER and was vomiting for hours was really pancreatitis and not kidney stones. No way to tell now.

My reaction to The Belly pain is similar to my reaction to The Headache - I got very cold and my blood pressure dropped. The hospital room was glacial and my roommate had just had surgery so bless her heart she was hot, so they even brought in a fan to make the cold air colder. I froze to death while waiting for the enzymes to go back to normal and the pain to dissapper. No matter how many covers I had I couldn't get warm. It felt like there should be icicles dripping off my hospital bed.

The Headache transformed into a whole head monster headache yesterday. I think this is a side effect of having pancreatitis. Every bad episode The Belly has given me a horrendous headache occured, even before I got The Headache in 2007. I spent almost five hours yesterday just throwing up stomach acid (I had nothing to eat or drink) before I got a requested change of medication. One big dose of benedryl and phenergan and I was able to drift off to never vomit land and get a little sleep. I had been getting dilaudid for pain management, but I think The Headache didn't like dilaudid so well. Sometimes dilaudid will put me out for hours but The Headache decides to keep on rolling and I wake up in very bad shape - like yesterday. I told them no more dilaudid, a request they seemed surprised to get.

I am still in quite a bit of pain, but was able to hold some food down today, so I got sprung from the hospital. Woo Hoo! Now I am at home, comfortably warm. The Headache is still hurting quite a bit but I have the occipital stimulator on high and have been taking benedryl and phenergan and trammadol to knock back The Belly pain. The facial pain has been very bad this episode.

The gastroenterologist that took my case says that the biliary sludge I had when I had my sphincerotomy done is a life long problem, and wants me to follow up with my pancreas specialist in St. Louis. The gastro doc also said that I could have had a stone or sludge gumming up the works, since I don't have a lot of risk factors for pancreatitis.

I am tired of 2009 already. I want it to be 2010 - a new year without these old problems.

Sunday, September 20, 2009

The Art of Diagnosis

Money Makes The World Go Around

While waiting on someone to complete their shopping today, I listened to The People's Pharmacy on National Public Radio. The subject was "The Art of Diagnosis" and the guest was Dr. Lisa Sanders, an internist at Yale University that in addition to being a physician writes a column for the NY Times and is a consultant for the TV show "House".

Dr. Sanders stated that many diagnoses were guesses, using the law of probability to start with the most common and then parse down to the less common if the most common did not work. For some of us who have gone through the guessing game more than once it is gratifying to know that what we felt - this is just an educated guess - is true. She said doctors needed to be more open about how they come up with a diagnosis and what the alternative (or less likely) guesses might be if the first one doesn't work out. She also stated that all patients have a story to tell, and many diagnostic errors occur when the physician or the medical establishment fail to pay attention to the story.

When I was trying to find out what had happened to me when The Headache began, I ran into many different physicians and many different diagnoses. The first was migraine, then status migrainosus, then migraine aggravated by sleep apnea, then intractable migraine, then medication overuse headache, then cluster headache mixed with migraine, then a cluster headache variant, then transformed migraine with occipital neuralgia, then paroxysmal hemicrania, then chronic cluster, and finally the only diagnosis that has really fit - hemicrania continua.

Almost every time I was interviewed I was asked "When did this headache start?" I would answer "December 2007" and the reply would be "I mean THIS specific headache" and I would answer "Since December 2007 - one nonstop headache" and then I would be ignored, and more expensive tests or drugs would be ordered. I guess because I had a documented history of migraine the doctors were going with the most probable diagnosis, but the last physician I saw actually listened and said - "One headache - this has been one headache this long?" and gave me the hemicrania continua diagnosis. She didn't need any tests, xrays, sleep tests, or hospital stay to diagnose this either - she just needed to listen, and apply her specific knowledge.

Having worked in healthcare and around healthcare for 20 some years I have a cynical attitude about healthcare entities and their primary motivation for doing anything: MONEY - either making more, or spending less. There are exceptions, and I have been around a few, but healthcare is big business in this country and has concentrated a lot of wealth in few hands. I don't see this changing anytime soon. Nor do I see any incentive for physicians to be better diagnosticians - value is not being placed on this skill, value is being put on the amount of time spent with each patient, i.e. more time = less money.

Hoping for a better world, knowing I probably won't get what I wish for!

Saturday, September 19, 2009

Strange Dream Playing Goph

I'm All Right?

Had a strange dream yesterday. I dreamed that we were playing Goph. Not Golf, but Goph. Goph was a game like golf, but the balls were made of frozen gophers. We were playing rounds on a beautiful green goph course. It was getting warm, and our frozen gophers (goph balls) were starting to thaw. Someone hit their goph ball too hard, and the gopher became unwound and laid on the ground panting, sorta flattened out.

I am sure there is some hidden meaning here, but I'm not sure what it is. Maybe I'm remembering the Kenny Loggins tune from Caddyshack: "I'm All Right"??

Friday, September 18, 2009

Bad Headache Day #39 2009

Blind Study Portion Over

Back from Cleveland, what a trip this one was! The blind study portion of the test is over, and if you haven't guessed already I have had a working occipital stimulator from day 1. The time frames for pain relief are right in the ballpark for other recipients that had working stimulators also. The nurse from St. Jude said it was a difficult study to "blind" because for ethical reasons the stimulator trial was a real trial, and then if the person got the non-working copy they had to try to persuade them that it was working, and, well, you can feel this so that was pretty hard to do. I am the last person accepted in the study, and they probably will start accumulating data now, before the official finish late 2009. Looking forward to seeing the findings.

My disability scales were much better, showing less disability, and my pain scales were much better on average. I had a very good short visit, and Lilly the Cleveland Clinic study coordinator said she would see if I could just do the last visit over the phone in three months, which would be fantastic so I don't have to go to Cleveland in the middle of the winter. Brrrrrr. Apparently I was one of the only participants who kept up the headache diary daily. I thought that was part of the deal! I was able to hand that sucker back in, thank goodness! I had to use a stylus to type in phenergan, benedryl, and vistaryl over and over and over again, which was a pain in the patootie!

I was at a client hospital working this week, and did pretty good. The Headache was acting up on day two, but it was a short day so that was fortunate.

Traveling back from Cleveland was a nightmare! The Headache decided to flare up during my seven hour wait for my flight. I was already through security so didn't want to go through that again, so I took a combination of drugs to put me out for a few hours while the pain magnified. HOWEVER, the airport only had chairs with arms at the gates in my section, no benches to lay down on or chairs together without arms. I tried sleeping sitting up, I tried sleeping sitting against the wall, and finally gave up and went to sleep on the floor next to the wall - hoping I wouldn't get run over by somebody's rolling luggage. The pain had lowered my body temperature and I had the shakes - part of the process, so no telling what my fellow passengers thought. At least I was able to control the worst of it. I had caused this myself as I took the train to a spot about a mile from the Clinic, and walked to the Clinic, and then back to the train. Physical effort is still causing me problems. I am going to have to relearn where my limits lie. Two miles in the span of a couple of hours must've been too much.

In the interview with the physician, we discussed the fact that I still am having some severe pain plus still having the nausea, eye tearing and light sensitivity when the pain was mostly under control. He asked if I had cluster headaches, and I told him one of my many diagnoses included cluster headaches mixed with migraines and a possible cluster headache variant. I told him that his guess was as good as mine - I could pull any headache diagnosis he wanted to out of the hat and claim it as mine at a point of time. He laughed, and said that my guess was as good as anybody's! Wondering if they see this pain remainder in cluster headache sufferers who receive stimulators. Mine are like swift jabs of a heated icepick stabbing at my brain.

I have an appointment October 6 to see a physician at Washington University in St. Louis concerning radiation after effects. I had emailed a specialist I found in PubMed that had an interest in radiation injury to see if he had any direction to point me in, and bless his heart he booked me an appointment with another specialist. I doubt if I will learn anything new, but if I there is something I can do to be more functional and have less pain I am going to try to pursue it. It goes to show, polite inquiry to unknown specialists can get results! Wash U/Barnes Jewish hospitals in St. Louis are nationally ranked facilities, so I have confidence in their abilities. However, again, they are probably out of network for me. I suspect because of the short time span I will need to gather medical records to take with me. I find this a gesture of futility because with neurologists they never take the time to really review them, but maybe these internal medicine specialists will take the time to look.

Lost day today, as I got home at 5:00 AM - it took me five hours to drive back from Kansas City (normally a three hour drive) because of The Headache - just woke up a little while ago. Took some medication just so I could whip on The Headache again, which contributed to the looooong sleep. Looking forward to a good weekend.

Monday, September 14, 2009

Blog Carnival Time at Somebody Heal Me!!

Thank you Diana Lee!!

Diana Lee at Somebody Heal Me has posted her September blog carnival. This months topic is "Evaluating Treatments, Medications and Procedures". I actually had a carnival worthy entry this time! I am so grateful Diana takes the time and effort to put these carnivals together each month. There is some interesting reading there as it seems a lot of us have tips and tricks on how we go about making healthcare decisions! Also, while you are there, check out Diana's Essential Reading tab. A lot of research went into these reading selections - excellent choices if you are wanting to find out more about headaches, migraines, disability, chronic pain and other invisibile illnesses.

Thinking of invisible illness, this is National Invisible Chronic Illness Awareness Week. Go to to check out all the blogs and the radio podcasts.

I have been reading lots of blogs this last week and reading the comments as well as the postings. One thing I have noted is that invisible illness sufferers seem to have one thing in common: people do not understand the gravity of many of these invisible illnesses and the impact they have on everyday functions. It's time we all educated ourselves on the spectrum of invisbile chronic illness and ways to deal with it.

Sunday, September 13, 2009

Waiting for The Sandman

Sleep Elusive Sleep

I've had a hard time going to sleep this past week. I finally took some sleep inducing medication last night and then overslept big time today. Yesterday was not a very good day, and I didn't get much done today because I'm still very very very tired. Drugged sleep is not always restful sleep.

The Headache was active yesterday but is not bad this evening. I'm not sure if its the weather, or because I'm trying to work full time again. I'm hoping its the weather.

Wishing the sandman would come and put me to sleep. I would even put up with some nightmares! Hoping I get some quality sleep in before the client visit. Sleeping in hotels is not easy either. Ah well, I better quit whining and do something productive if I can't sleep! Good night all!

Friday, September 11, 2009

Dreaming of A Forest

Finally Sleep and Dreams

Haven't been sleeping much this week, but I finally was able to sleep last night. As sometimes happens when I get extremely tired, I had a dream about The Headache.

I was in a wet rainy woods, with leaves falling all around me. A woodpecker flew by and settled on my head. I was enchanted by the bird and kept trying to grab it because it was sooo beautiful, but everytime I reached for it, it would flutter up and then land again when I put my hands down. The rain started coming down more quickly and the woodpecker started rat-a-tat-tatting on my head, making water fly. Then I woke up. The Headache was in one of those sharp piercing pain modes, so I think the woodpecker was The Headache.

The Headache is not nearly as bad as it was last year this time. The occipital stimulator seems to be helping (unless that's just a placebo effect), but twice in the last two days I have had moments of extreme white hot piercing pain on my right side of my brain. Left voice mail at my headache specialist, but they have not returned my call - which probably means the specialist and/or the nurse took the week off. Not sure if there is any way to medicate for these swift stabbing pains. At least the pain no longer keeps mounting into the stratosphere when the hot icepicks start piercing my brain. I can bear pain if I know it will end.

Worked more than full time the last few days. Got a lot of work caught up this week, probably will be looking for extra projects in a couple of weeks.

The Headache is slightly worse because of the activity and maybe the wet weather. I am getting back in the mode of travelling for work next week, with a couple of days onsite at a new client, then off to Cleveland on Thursday, and back to Kansas City Thursday evening. I don't know if I will stay in KC Thursday evening or not. I suspect I will because I won't be hitting town until almost midnight. My flight leaves at 5:00 am so it will be a long day for me. I have scheduled Friday off, but may work part of the day if I can.

Because of my schedule I'm not sure if I will be blogging much next week. I'm hoping The Headache will be behaving itself much better, especially if I get full programming from the St. Jude representative instead of just the four programs I have for the study. Not sure what to do if the right side problems keep up - but at least the pain on that side is not continuous.

Fall is my favorite time of the year. I live too far south now to have early frosts, but I remember waking up as a child in the morning when there was an early frost and the crispness of the air and the crunchiness of the grass underfoot. We mainly have oak trees here, but I grew up around mixed hardwood forests where fall meant hundreds of shades of color as the leaves turned.

I must be homesick a little since going up "home" for the family reunion. I miss the closeness of living in a small town. The town I live near now isn't so large either - about 5000 people, but the town I grew up closest to had a population of 25. A world of difference! At the general store (which reminded you of Drucker's store on Green Acres) you could buy original Studebaker parts in Studebaker boxes from when they had a Studebaker dealership. I bought some elastic there in 1978 that the store owner's wife discounted from 10 cents to a nickel because it had been water damaged in 1956 when the roof leaked. The elastic was 3 years older than me!!! They had a checkboard out, and rang up your purchases on a big fancy old NCR cash register - hand cranked and went CHING when the cash drawer opened. They carried Dad's Root Beer in glass gallon jars, and had penny candy of all sorts. We used to tease my father (as soda pop was not often served at our house) saying "Buy us some Dad's dad, how about some pop, Pop??" Ah well, its all closed down now, and has been for many years. I'm feeling my age tonight for sure. Must be because I grew up in Hooterville and not Pixley.

Wednesday, September 9, 2009

In Anticipation of Invisible Illness Week

September 14-20 2009

Thanks to the many bloggers who are participating I am now aware of Invisible Chronic Illness Week. For more information on what an Invisible Illness is, and how many people are affected by these afflictions, go to

I've decided to fill out the following list, as I have learned a lot reading the lists of others. Hope mine makes sense as The Headache has been really intrusive this evening. I'm thinking it may be the weather...

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: hemicrania continua ( I have many more, but I'm tring to simplify this a bit)
2. I was diagnosed with it in the year: Hemicrania Continua 2008
3. But I had symptoms since: hemicrania continua 2007 (although I had "common" migraines from 1976 - 2004)
4. The biggest adjustment I’ve had to make is: knowing that there is a limit to the pain I can tolerate and trying to adjust my life and medication to control the pain and still feel productive.
5. Most people assume: that I am as healthy as a short chubby pony, maybe a tempermental Shetland Pony that children won't ride because it bites and tries to scrape them off on low hanging limbs...I don't think I qualify for healthy as a horse....
6. The hardest part about mornings are: trying to function with little or no sleep and falling asleep at odd moments when I am trying to get dressed.
7. My favorite medical TV show is: Dr. G Medical Examiner
8. A gadget I couldn’t live without is: a potato peeler - otherwise I carve away all the potato with the skin...
9. The hardest part about nights are: pain at 2AM to 3AM, and not sleeping.
10. Each day I take 8 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried a few, were not any more effective than any other treatment.
12. If I had to choose between an invisible illness or visible I would choose: the invisible illness. Having been friends with persons with visible illnesses I don't know if I would have their bravery to deal with people in general and their misconceptions. With an invisible illness I can be perceived as healthy when walking through crowds or meeting new people. Visible illnesses don't give you that option.
13. Regarding working and career: I am glad I have such wonderful bosses because it has been a struggle to work at all these last two years.
14. People would be surprised to know: at one time I was a fine art major in college and love art history and am a pretty good draftswoman..
15. The hardest thing to accept about my new reality has been: my fear of extreme pain. I'm not normally a fearful person, but there are realms of pain I don't want to go back to ever.
16. Something I never thought I could do with my illness that I did was: get into a national study for occipital stimulators for headache pain. Woo Hoo!
17. The commercials about my illness: don't exist. There aren't too many of us out here yet.
18. Something I really miss doing since I was diagnosed is: swimming - exercising is a huge problem for me as it exacerbates the hemicrania continua pain, even with my occipital stimulator. Sigh...
19. It was really hard to have to give up: my feeling of invulnerability
20. A new hobby I have taken up since my diagnosis is: blogging - it's a great distraction.
21. If I could have one day of feeling normal again I would: take a flight to a Carribean island and bask in the sun and play in the surf.
22. My illness has taught me: I have limits.
23. Want to know a secret? One thing people say that gets under my skin is: you look as bad as I feel. All you can think is - I look bad??? or are they feeling really good? Sooo confusing.
24. But I love it when people: give me information/advice about headaches. You never know when you will learn something new! I found out that mosquitos don't like it when you take too much niacin - a fantastic summertime tip that didn't help the headache, but was interesting.
25. My favorite motto, scripture, quote that gets me through tough times is: The 23rd Psalm:
The Lord is my Shepherd; I shall not want.
He maketh me to lie down in green pastures:
He leadeth me beside the still waters.
He restoreth my soul:
He leadeth me in the paths of righteousness for His name' sake.

Yea, though I walk through the valley of the shadow of death,
I will fear no evil: For thou art with me;
Thy rod and thy staff, they comfort me.
Thou preparest a table before me in the presence of mine enemies;
Thou annointest my head with oil; My cup runneth over.

Surely goodness and mercy shall follow me all the days of my life,
and I will dwell in the House of the Lord forever.
26. When someone is diagnosed I’d like to tell them: keep trying specialists until you find one that actually communicates with you and has some sense.
27. Something that has surprised me about living with an illness is: how quickly it takes over your life.
28. The nicest thing someone did for me when I wasn’t feeling well was: sit for hours in the emergency room and driving me home in the wee hours of the morning.
29. I’m involved with Invisible Illness Week because: its a fantastic education effort to bring awareness of invisible illnesses to the forefront.
30. The fact that you read this list makes me feel: glad I decided to participate.

Pain Spikes

Pounding Head

Having sharp spikes of pain today, but The Headache is at a dull roar, or maybe an incessant bark. The sharp pains are in my temple region and they come in flurries. I just bear with them and I hope that one day soon they will be gone. Had quite a few today, but maybe its the aftermath of Monday night - a migraine hangover?

No more right side pain for The Headache so hopefully yesterday was a one time event. Worked most of the day, but spent a lot of it in meetings. Meetings - a sure time waster if there ever was one, but at least these were just with our small team of installers, so the meetings were to the point. My preference is no meetings but when they can't be avoided short and to the point is the best.

Looking forward to the rest of the week. I have a lot of work lined up and I'm ready to roll! Typical of a day after a three day holiday I was busy on the phones when not in a meeting. Hoping The Headache stays at bay. Next week I am going to go on site with a customer for a couple of days, and then go to Cleveland. Not much time for support or programming, so I want to get ahead of the curve this week, so I can play catch up the week after next.

Tuesday, September 8, 2009

Bad Headache Day 38 2009

Payback for Being Chauffeur

Had a wonderful time at the family reunion last weekend. Saw my favorite uncle in the whole world, my monther's younger brother Pood, and got to visit with him for a few minutes. My Mom was Miss Queen Bee talking to everyone while Pood was the king of the festival. I was pleased to see my cousin Bob there also, as he has had a couple of very bad strokes. His son and grandsons were there too. One of his grandsons looked just like Bob did at that age!

The Headache tried to be ugly Saturday night, but I had brought some crafts to do in the hotel room just in case - to keep my hands busy and my mind off The Headache. They worked pretty OK. I couldn't really medicate as I was chauffeur for Mom. Sunday was wonderful - The Headache was away, buzzed off by my protector the occipital stimulator. Sunday evening late The Headache tried a comeback, but I took some medication and pushed it back. We had a surprise visit earilier Sunday night from my niece and her husband at the hotel and luckily The Headache didn't interfere!

Monday driving back home The Headache started up again. By the time I got home I was tired and The Headache was really starting to smack on my brain. I had to go to the grocery store, and took someone else with me, and didn't think I would be able to make it back home, but I did. Yeah!!! Then I tried medicating for The Headache. Too little too late. I got freezing cold (The Headache likes me very uncomfortable) and then the nausea/throwing up started. After emptying everything out I just took, I was able to get in the least nauseating, least painful position and stayed there for a few hours.

The scary part is that I had new pain this time I have not had before. The right side of my head exploded with pain. Never had this happen before. Migraines have always been on the left side, my hemicrania continua is on the left side. Where did this "new" pain come from? Did I just have some kind of side shifting migraine with The Headache? Will have to call my headache specialist and see what's happening I guess. Don't want to start down this road after getting the left side stomped out.

This morning am posting this as I wait for The Headache to subside enought I can go to work. I think I will be leaving in about 30 minutes as some of the pain is lessening. I thought I would be ending up in the ER but managed to tough it out last night - never ever go to the ER on a holiday weekend if you can avoid it! They are overcrowded and understaffed because no place else is available (at least in my area!). How do I know? I've had to be there a few times in the last two years.....

Friday, September 4, 2009

Reunion Time

Getting Prepared

Shopped this evening after work to find some foldable lawn chairs to bring to my Mom's family reunion this weekend. I wanted old fashioned aluminum folding lawn chairs but of course there were none of these, just those cloth sling "fold and put in a sack" chairs. Not my favorites but I bought them anyway.

The Headache is not happy about all the walking I did trying to find lawn chairs. It's talking to me this evening. I'm going to sit quietly in a little while and practice my biofeedback. The facial and eye pain is gaining on me. Please, Lord, just one weekend without complications!

Debating about whether or not to take my dog Augie with us. I have reservations at a hotel that allows pets. We've stayed there before with Augie - he loved it. The elevator doors would open on one floor and there would be one set of people to see, and then the doors would close and then open again and like magic there was an entire different scene with different people! He especially liked the automatically opening doors. There are just going to be a lot of people there, and I don't know how Augie will like it.

My Mom's family is huge. When I see the Duggar family on TV I think of what growing up in my Mom's family must have been like. Mom said they ironed and pressed their underwear flat in order to get it to fit in the drawers and my grandmother would create new dresses out of shirttails and old skirts. The family of my Mom's brothers and sisters goes like this in descending order oldest to youngest, with Anna and Ralph being the only two still with us, the rest having already passed on.[Note revised this AM per input from my Mom, with nicknames added).

  1. Leon (Young Man)
  2. Vivian (Vi)
  3. Ethel (Rube)
  4. Pearl (Jane)
  5. Harold (Wheech)
  6. Maxine (No nickname - died in childhood)
  7. Lileth (Min or Ginger)
  8. Clarence (Mac)
  9. Henry (Stub or Hank or Lennox)
  10. Geneva (Doze)
  11. Nadine (Dinny)
  12. Nonavee (John)
  13. Anna (Snooks)
  14. Retta (Rexy)
  15. Ralph (Pood or Allen)

  16. Someone once asked me if my grandparents were Catholic, and I replied, no just Prolific, to which the person who asked the question said "What kind of religion is that?" to which I replied "It's one you have to practice a lot!"

    Grew up with a lot of people having nicknames from my Mom's side - Mine was Sisseroo, my brother was MullGrinder or Grinder, I had cousins named Snake and Fox.

Thursday, September 3, 2009

Worked All Day for the Sugar In My Tay

Looking Forward to Tomorrow

Whipped out several projects today, including one that has been bothering me for a few months. My poor old brain was so overloaded with The Headache the logic circuits where flaking out on me. Now that The Headache is fading the logic is coming back - didn't know if it would!

Perhaps my logic wasn't working because I wasn't able to do my "thinking" walks. Since I began working many many moons ago when I am stuck on a problem I take a "thinking" walk to mull over my options. If the problem is really bad I will wait overnight, and give my brain instructions to fix the problem while I sleep. Until The Headache came along, my brain was a pretty obedient instrument that responded well to these techniques. The Headache bolloxed all that up.

One of the bosses today said I was becoming more and more of a coder (as in programmer). Sigh. I enjoy the problem solving bit of coding because it is like a puzzle, but to sit and spin out code every day is not my forte. They are such nice folks to work for I just can't complain. We are short handed while some people are on vacation and others are on FMLA and others are working conversion projects. At least my mind is working at almost my old pace. I think by next week I may be up to speed. Woo Hoo!!!

The Headache is still getting more painful at certain times of the day/night. Not sure if any remedy will completely rid me of that. The Headache wakes me in the wee hours of the morning and sometimes I can't sleep. Last night and tonight and Sunday night have been problems. Then I fall asleep getting dressed in the morning. This plays heck with me getting to work on time. I wake up in the oddest places, but mostly I fear falling asleep while driving. I almost went through a red light yesterday morning because I was so tired. Next hurdle to jump - fatigue.

Wednesday, September 2, 2009

The Argument Clinic

Too Many Windbags

I was reading Stephanies post at Headwise about trying to go to a new neurologist, and it gave me flashbacks to some of my experiences while trying to get a diagnosis for The Headache.

It torques me when neurologists play amateur psychologist with patients. If they were any good as a psychologist, why were they practicing as a neurologist?

What they seem to find (when in my opinion they are piss poor diagnosticians) is "somatization disorder", where internal psychological conflicts are exhibited as imagined physical ailments. But to quote the Wikipedia entry on this disorder "There is a possibility in some cases that the condition is more a factor of the physicians lack of knowledge, or attitude to chronic illness, than any psychological factor in the patient."

No Duh! Being a patient of one of these jackasses is enough to give you a disorder called "Spent a lot of Money for a big lot of Nothing" or "Empty Pocket Syndrome." A clue is that instead of really interviewing you they start right in on the psychological bull hockey. Yet most of these dingleballs won't refer patients to psychologists because a real psychologist might wonder how they reached their conclusions.

Psychology and psychiatry have their place in healthcare, but these disciplines should be practiced by persons who spent years studying and working in these specialties, not the armchair quarterback neuros that are so used to seeing cognitively impaired patients that they can't handle it when they get one with critical thinking skills. I don't go into a physician's appointment expecting to have to argue with the doctor - after all I and my insurance company are putting out some bucks for an expert opinion - so why does the physician go into the appointment determined to argue with the patient or immediately disbelieve and invalidate the patient's story?

I guess this is enough of a rant and rave on this subject. I am sorry Stephanie in the vulnerable role of patient had to put up with some pompous windbag who probably didn't want a headache patient in the first place. And I have a rogues gallery of similar neuro's met along my headache journey dancing in my mind I'm determined to never see again. And then I find one like my current headache specialist who is open to communication and understands pain and the debilitating effect it can have on the body and the psyche...treat the source of the pain, and all else falls into place.

Tuesday, September 1, 2009

Dream Baby That The Headache is Gone

Channeling Roy Orbison

Got my eyes dilated for a "slit lamp" eye exam and the sunglasses I got to drive home reminded me of Roy Orbison. I am taking plaquenil for the autoimmune hives, and I'm diabetic (although just barely diabetic) so it was a good idea. Had a great exam, got a prescription for eye glasses, but the doctor said I could continue wearing my +1.50 dimestore reading glasses, as that was what the prescription was. I told him at the rate I lose glasses, the prescription option was not a very good idea - easier to replace at a few dollars a pair.

Sunday was not a good day, but I was able to round up The Headache and put it out to pasture. Spent Sunday night head down in the toilet "selling Buicks" as my late father would say, but I slept two hours, got my act together and headed to work Monday. Slept all Monday evening and Monday night, more rested today. Having a shadow headache this evening and some periods of severe pain. Sigh.

I have had a great week at work so far, getting a lot of projects completed and off my desk, and even a little bug stomping (program fixes) here and there. Not only do I love my job and who I work for, but our customers are great as well, and I love talking to them. They are quick to respond to questions, and even trouble shoot their problems before they get to me. Yeah customers!!! I think they missed me while I was working so few hours a week. I have started an exercise program, trying to walk a brisk mile each day at work.

I'm going to Dream, Baby, that The Headache has thrown its fit for the next couple of weeks, and tonight is just an aftershock. Dreaming its done-dee, buh bye, done for, pushing up daisies, sending email to gophers, fried to a crisp. Using all my positive imagery tricks!!

I have the big reunion for my Mom's family this weekend. I think there are going to be over a hundred there now. They are quite the musical bunch and several are bringing their guitars, drums, and whatever else they have. I have a video camera, and will dust it off and take some video. I will have to watch out, because male pattern baldness dominates this family so the light boucing off heads may play heck with the camera. My own brothers and one nephew will be some of the bright shiny bouncers!

I will return to Cleveland on September 17th. After that I should get my complete programming and not have to do the electronic headache diary anymore. Yeah! I am having trouble getting it to transmit - I suspect the modem that uses the phone lines is getting a little wonky. I think the sponsors had such good results they are wanting to get finished and publish quickly, hoping for approval by insurance companies.