Belly Ache Bungalow

Pancreas Party Time!

Was feeling very sick after the "gastric emptying test". Called the doctor who performed the test, talked with his nurse to ask if I should feel so sick from the EUS or the GET. She couldn't give me any feedback, said first the doctor would need to review my records and THEN she could call me back, but it might be a few hours. In the meantime I just felt sicker and sicker. I called her back and said I was going to go to The Emergency Room or to Urgent Care and not to bother.

I went to the ER, figuring I would get my test results back faster. I then had to explain 3 times that my doctor's practice in Springfield referred me back to Dr. Gnome in St. Louis who then referred me to Dr. Hawkeye in Joplin. The puzzlement on their faces matched mine. They all asked why?? and I replied why indeed?? No answer from me to explain it, it just was.

My lipase was highly elevated again - over 1,000 which for some people can go higher - but that's pretty high for me. That explained the sick feeling, the nausea, and the pain that just won't go away. That was Tuesday afternoon. I got released today, Friday afternoon so a three day stay.

I was admitted to the hospital, and a very good hospitalist over my case, and was given many doses of dilaudid, zofran, and phenergan over the next few days. The first night I had a flare up of The Headache. I am getting used to this as part of the pancreatitis process. I vomit, the pain flares, I get nauseated, vomit again, the pain gets worse until I am so exhausted I can't even go "The Pain The Pain The Pain - bluh bleh blah blub buik" anymore.

This time I had a roommate who had a much worse pancreas condition than mine, and was highly medicated because she had extreme pain and extreme anxiety together. As I was in the head down over the emesis basin mode "I'm sooo sick bug burgh bluk erk" she came over to my bed and rubbed a alcohol swab on my nose, and asked if it was all better now. I told her "No sweetie, go back to your bed and get better" and then started the "buh buck eeeyck hack" back in the basin. I was in so much pain I just bairly noticed nurses aides rushing in and escorting her back to her bed, poor girl. She was trying to help all she could even though she was in awful pain herself. She was so out of it on meds I don't think she remembered doing this.

After about an hour and a half of the moaning and vomiting from me the nurses listened and added phenergan to my mix (I hadn't had any for several hours) which helped calm the throwing up portion. I only had one more episode when they stated I could have some real food like jello and broth - I guess the anticipation sorta started the stomach upset up again! This time my room mate had been transferred to another hospital so I didn't get any alcohol swab on my nose to make it better. I did gain a very nice older lady as my roommate and it was her first goround with pancreatitis. She and her husband were married 58 hears and showed a restored Model A at various car shows, a very interesting lady!

The first night the night nurse came over and had a discusion about my occipital stimulator and migraines. She had 3-4 uncontrolled migraines per week, I said I couldn't see how anyone can work with that many. The next night a different nurse was over my section, and a different person was moaning "I'm so sick" and I heard one nurse say to another - that's room 7xx (my room) she was like that last night, so I stuck my tongue out at them as they marched by. Got a lot better service than the usual 1.5 hour wait from the time you hit the nurse bell until they show up after that, guess they got caught talking out of turn!

The Belly pain has never really stopped for some months now, and it is now pretty severe. The dilaudid just barely controlled it. I'm finally home tonight, off all pain meds for about a day and have eaten some things today. I told the hospital that I was all better (my enzyme levels had fallen) but I just didn't report the pain remainder because there was no purpose to my staying there longer. The Belly just is not behaving properly.

The worst torture they put you through with pancreatitis is that you have to EAT a REAL hospital meal and keep it down before you leave. There are two things I find very difficult to do in a hospital (maybe in my mind they are related??) 1) eat cafeteria food or any food for that matter 2) have a bowel movement in a hospital room bathroom. These may be very strange quirks, but I know I have them - there is no controlling these. I have to just make myself eat that meal and gag it down. The food isn't that bad, its just ...well, wait a minute - the food IS that BAD, not fooling myself there. As to the hospital bathroom, I just have to wait until I get home if that is possible.

I verified with Dr. Gnomes office that I officially have chronic pancreatitis. There it is - a definite diagnosis of a not very good problem. The Occipital Stimulator study coordinator at the Cleveland Clinic called and wants to set a date for me to go back there. I really don't feel well enough to travel, so I will call next Tuesday (when she should be in) and see what we can arrange. The Headache is much better but The Belly is ruling the House of Pain at this moment.

Dr. Gnomes office is going to call back after they talk with Dr. Hawkeye about my gastric emptying test. I don't know if there is anything Dr. Gnome can do from his surgical box of tricks. I don't think there really is - just medicate the durn pancreas for pain and keep the enzymes going, but maybe there is something they can do that is a little less drastic than completely removing my pancreas.

Bilious Emesis

Erpiness Abounds

Managed to avoid going to the ER for The Headache, despite its continued obstinance and persistance the last few days. However, yesterday I started throwing up and couldn't stop. Ended up in the ER dehydrated and with The Belly having fits. Had to wait hours to be seen as the swine flu epidemic is ongoing here and the waiting room was full of sick children. One of the nurses told me there were only a few ER rooms that were being reserved for non-flu patients, so waiting was necessary. I don't think I will catch H1N1 since I am pretty sure I had it in May.

I couldn't tell what was going on with The Belly. Could it be the pancreas? Could it be another UTI? Could it be something else entirely? I had taken 2 doses of phenergan to try to stop the nausea and vomiting, but it didn't help. The projectile vomiting also made The Belly start humping and jumping with pain. I also had mid and low back pain.

The ER doc was very kind and gave me an IV and also a big IV injection of zofran and fentanyl. The pain was bad enought the fentanyl didn't really help it much, but it did let me drift off to sleep while I got hydrated. The nurse came back and told me that I had a bad UTI, and he gave me a script to have filled. I have lots of allergies that were documented and never thought to check the script - it was for Septra a brand name I did not recognize. I got home between 1 and 2 in the morning. When I got up in the morning I looked up Septra and found it contained sulfa, a no-no drug for me. That's why I double check everything...

I then called my urologist to see if they could prescribe a better medication. All I got was voice mail, so I called my personal physician and at least got to talk to a nurse. They didn't know what the doc would do as far as prescribing a better antibiotic. I stopped by the ER on my way to work to let them know that a mistake had been made, and got a script for macrobid to replace the one for Septra. I then went to work.

The urologists office called and said I didn't have a UTI per their opinion because I had no nitrites in my urine so not to take any antibiotics until they cultured the sample. I didn't bother to explain to them that I generally have enterococcus infections, a gram positive bacteria that doesn't create nitrites. I have been down this route with doctors before.

When I got home, ready to drop off the macrobid for filling, the pharmacy said my PCP had called in an antibiotic, so I paid for it and am taking it. The nausea is going down some this evening but the pain at the level of my kidneys is still pretty bad - it could be a UTI or it could be pancreatitis. Who knows? I will pull my records tomorrow to see what the test results were.

I have an appointment October 12th for my endoscopic ultrasound (EUS). I had called Dr. Gnome's office to find out the number to call the Joplin GI doc who was going to schedule the EUS since it had been a week. The receptionist somehow transferred me to another location where they have an office, that person there figured out no-one has sent my info to the Joplin doc (which is what I suspected) and promised that it will be sent today, then the receptionist called me at work while I am still on the line with her office and left me voice mail saying she's sorry I had felt the need to hang up!! I think the receptionist needs to figure out how to use their phone system...she was friendly enough, just a little ditsy on handling the transfer.

Tonight I am up into the wee hours of the morning, still quite nauseous and with considerable pain in The Belly that I am pretty sure is the pancreas. It's doing its dance of pain like it does when it wants to complain, I will take some medication pretty soon and try to sleep. I am so afraid of getting a physical dependence to pain killers that I resist taking anything and wait too long sometimes.

The right sided head pain is pretty bad this evening. It's been going off and on all day. It's not pleasant but it's livable. It is a boring pain through my right temple back to my right occipital region. Heaven preserve me from having the hemicrania continua turn into entire cranium continua!

Lost Day Saturday

The Headache, The Belly

Another lost day. Friday at work I had to medicate at work. I looked back over my typing later and I don't think I spelled two words in a row correctly! Yikes! Not professional, but we are in the middle of testing some interactive components with another system so my body and mind were needed. I guess my body was there, and some of my mind.

Today I have tried to keep The Headache at bay medicating every four hours. I've slept a lot but The Headache is not behaving. I wish The Belly wasn't such a picky thing, because I feel if I had an 60 mg injection of toradol The Headache would drop back to obscurity. I have changed stimulator settings every so many hours also, hoping that changing things up will help. It has helped some - I'm not at an emergency room yet, and four months ago I definitely would have been.

The Belly is not happy today because I ate a real meal - not much of a meal, but real food. I thought perhaps some of The Headache was coming from not eating for so many days, so I had supper tonight. It's almost one in the morning and The Belly hasn't calmed down yet. I took the maximum pancreatic enzyme pills I was allowed before eating, but it didn't seem to help. Maybe my pancreas is plugged up so any food makes it hurt. I may have to take another trammadol for The Belly pain. It helps it some, but doesn't do anything for The Headache.

I'm ready to get back to normal but I don't think The Headache or The Belly is cooperating. I'm debating whether or not to try to go back on short term disability again. I've not worked full time days hardly at all the last couple of months. The fatigue is almost too much. I can't hardly keep on going I'm so tired, yet the pain is not allowing me to have restful sleep, even when drugged.

My niece who lives in Kansas gotten bitten by a feral cat she was feeding, and is now getting rabies shots. Cat bites are serious, and are always considered a medical emergency. My niece has a soft spot in her heart for all animals, especially abandoned animals, but this time the cat was either sick or scared or just plain mean and definitely bit the hand that fed it. The cat is in quarentine and hopefully will not display signs of rabies and my niece may not need to continue the rabies series, as they are painful.

The family history has a story about the "mad stone" that was passed around and used through the years. The mad stone was actually a bezoar taken from the stomach of a deer. Supposedly this stone could be used to cure rabies. I suppose they just laid it on someone who had rabies?? Don't think I would want to try it myself. Gross.

Bitter Stomach or Stomach Bitters??

The Belly...Yada Yada Yada

Spent most of my Sunday sleeping. I am extremely tired. The experiment with eating more protein and fat is still hurting The Belly. I haven't done anything today. Nothing. Zilch. Nada. Except sleep, if that counts.

The Belly is mighty displeased with me. It just wants to turn itself inside out tonight. Hoping it resolves soon. Boy, I am jonesing for something really good to eat, but The Belly is having a fit because I ate oatmeal this morning and some rice this afternoon. Generally I can get by with pure carbohydrates but The Belly has said No, nothing today - not even liquids.

The Headache is worse and I've had the stimulator as high as I can stand it all day. I may have to turn it down considerably in a while, because it actually can make you feel over-stimulated and sore if you keep it too high too long. Phenergan and vistaryl may be the answer soon if I only can keep them down! Ready for the transdermal dose right now, but as usual my timing stinks. I will have to be patient for the compound to be completed.

I'm just a big ball of whineybutt this evening. Life could be much worse, and heaven knows I could lose a few pounds. Bland food never killed anyone. Pain builds character. Endurance can be practiced. Patience is a virtue. Yada Yada Yada...

Pancreas My Pancreas

The Belly Rules

Tonight The Belly is talking to me, and its not happy. Dr. Gnomes PA said I should try to eat more fat, more protein and up the pancreatic enzymes. Well I tried today, and am paying for it tonight. The nausea and pain are not as bad as I have had in the past but they are worse than I have had for several days.

I know I can't go on without eating. I know the liver must have fat and cholesterol to function correctly. I know that muscles need protein to work properly. I know I need to drink more liquids. I feel dizzy and weak which is probably due to improper diet. I am extremely tired, especially because The Belly does not like to lay down (I think this is the pancreatitis). I don't think I am going to try eating this much again until after the EUS testing. I probably ate a half cup of protein today, which I figure is a half cup too much!!

I have a long long way to go before I am totally malnourished, so I think if I just hang tough until The Belly can get figured out I can make it. Otherwise I am afraid it will be hospital time for me again because of the pancreatitis... and I have way too much work to do in the next three months to waste my time that way.

On the silver lining side, The Headache has calmed down except for some jolts and jabs. I did have a bit of a right sided headache but it did not escalate this time! Woo Hoo occipital stimulator!

It's almost 3 AM so I am going to try some more antinausea medication and see if that helps the nausea AND the pain. I just whiney tonight. I need to just get with it and quit the pancreas pity party I'm having. It's not been a great week for me. The exception was the "Get Motivated" seminar which had Colin Powell as one of the speakers. He was a fantastic orator, at ease and articulate. Terry Bradshaw was a speaker also, not nearly as "put together" as Colin, but very funny especially when he told some football stories. I feel motivated mentally but out of steam physically. One of these days I'm going to get this body of mine in synch with the brain!

Dr. Gnome Visit

The Woodland Glade

Had my visit at Dr. Gnome's office in St. Louis today. I didn't really see Dr. Gnome - he was probably busy somewhere making oodles of money doing ERCP's - but saw one of his PA's (Physician Assistant). She was quite knowledgeable and pleasant.

I should be receiving a call next week to schedule an EUS (endoscopic ultrasound) to check my pancreas for changes from the last few pancreatitis attacks, signs of chronic pancreatitis, signs of autoimmune pancreatitis, signs of pancreatic cancer, and evidence that my two year old sphincterotomy is still functioning correctly.

I was glad to find out that Dr. Gnome works with an EUS doctor in Joplin Missouri - about 45 minutes from my home rather than four hours. When I have the EUS done, if there are any masses or cysts found I'll be referred back to Dr. Gnome. If there is any problem seen needing a repeat ERCP I'll be referred back to Dr. Gnome. If there is evidence of autoimmune pancreatitis I will probably be started on steroids by Dr. Gnome. Since it is an endoscopic ultrasound, I will be sedated so my older brother is going to be the designated driver.

The PA said I was not eating enough fat and that I could take more of my pancreatic enzymes with meals to see if that will help with the pain and nausea. I hope to be able to add more protein also. She said that I appear to still be in the recovery period from the last acute pancreatitis attack, and that explains my very bad fatigue, which is probably being exacerbated by not enough dietary fat.

I had to laugh to myself. Dr. Gnomes office looks back into a grassy woodland area that extends back miles into a park area. It is very shady and has high walls surrounding this section, so it is very secluded. The windows are mirrored so wildlife cannot see into the building. While I was being seen, twin fawns came right up to the windows and started eating the lovely grass. I thought, awwww, Dr. Gnome road a deer to work today, and she brought her babies! I wondered if he had a little mushroom house around back where I couldn't see...

The Headache is having stabbing pains off and on all day. The Belly is hurting because I tried to eat a higher fat diet this evening, plus it got poked on today. Going to medicate and go to bed directly. It took me over six hours to drive home (normally 4 hour drive) because The Headache and The Belly were making my life miserable. Glad I'm home...

I Eat Therefore I Hurt

Pancreatic Pandemonium

The Belly has ruled my day today, but did get some things done! Spot mopped the floors today and cooked a complete meal the first time in a couple of weeks. I have just been getting by with cooking just what I absolutely had to because #1)I am extremely tired - probably from the pancreatitis and #2)I get nauseous cooking - probably from the pancreatitis. But today I thought my Mom (who can't cook much anymore) deserved a real meal.

I made a nice Sunday dinner of roast, noodles, cole slaw, and home canned green beans. The roast was still frozen when I started but I used my electric pressure cooker and it was perfect. Pressure cookers infuse meat all the way through with the flavors that you put in with the meat (in this case onion, carrot, and celery). I did flavor the green beans with some very lean deli ham instead of the standard bacon I generally use. This kept the fat content low enough that I could eat some. Can you tell I'm starting to obsess about food?? Auuuugh!

I doubled the pancreatic enzymes I take with meals and it helped for quite awhile but this evening The Belly is complaining quite a bit. The Headache has behaved itself, but perhaps that is because I have been sitting quietly the rest of the day/night since cleaning up the dishes and the kitchen and giving my dachshund Augie a bath. Sometimes just sitting still is the best way to make The Headache behave when the stimulator doesn't quite keep up! I may have to take a pain pill for The Belly - am up way too late because it gets worse when I lay down. The medication Dr. Bellyfixer put me on is starting to work, so I'm going to start increasing my liquid intake again and hope for the best.

Thinking of dachshunds, Ness at Dachshund Strong is asking if possible, send a box full of signed holiday cards to Operation Christmas Card. This project has a goal of at least one card for every one of our deployed service people that may not have anyone to remember them during the holidays. A personal note of thanks or holiday sentiment is suggested. Ness has a son in the military, and in these times that is something both to be proud of and worried about. I'm going to set up this at work for my noon times when I can't eat anyway, and maybe get some of my coworkers involved.

IMPORTANT: The signed cards must be received by November 20th in order to reach the soldiers by the holidays. I am going to see if I can find some Hannukah and Seasons Greetings type cards in addition to Christmas Cards, and designate it someway on the envelope. The address to send these to is:

Amanda Sullivan
Attn: Operation Christmas Cards
PO Box 102
Shrewsbury MA 01545

Please read Ness's blog to get the complete scoop!

The weekend is over, ready for the week to begin - travel to Kansas City to see my headache specialist Tuesday, possibly travel for work Wednesday and Thursday, and then Friday off to see Dr. Gnome about the pancreas. I'm gonna have to come up with a nickname for my headache specialist - I'll think about it before my trip to KC. Already dreading the travel...sigh...

Another Doctor Visit

Tired of Waiting and Waiting Rooms

Have another doctor visit tomorrow. This time to see the urologist. Had a voice mail message at home from my PCP, so no telling what that is. I'm trying to get all my health problems resolved because at work we are heading into a system implementation with a three month schedule which includes a two month training and go-live marathon. I haven't been able to work a full week yet, since everytime I turn around something else hits me healthwise, so I'm worried about my stamina. Can't have that interfering with an implementation, the client depends on our help too much at this stage.

I did manage to whip up a Gantt chart so I could visualize what needs to take place and when. Most of the dates are tentative but a few are set in stone. I worked for a while as a project manager and so I'm particular about how I need to see multi-deadline/multi-tiered schedules with dependencies.

Truth be told, if I had someone to take my place at work, the way I'm feeling now I would resign and let them take over. The people I work for are marvelous, and I hate not being able to give 110% to my job. I'm so tired right now I don't feel like I can drag one foot in front of the other, let alone be perky and alert in a training environment. I generally get a surge of adrenal on game day, so am hoping it kicks in. The clients are super nice and very quick learners, but I feel like I'm dragging a barge over a sandbar just to move and I don't want to short change the clients on their training. I also need to revamp my training materials, which requires a little brain power - maybe I can crank up the amps on the stimulator and get it buzzing.

My PCP said that the fatigue is probably from the pancreatitis. It sure can be an energy zapper, plus the starvation rations don't help. I am losing weight, hope I just don't put it right back on when I am feeling better. Dr. Gnomes office called me today because they needed a release of information form filled out before the hospital would release my records. I saw one problem with their release request - they did not specify what type of records they wanted to see - they wanted everything for the last 10 months. Because so much screwy medical stuff happens to me, that may be several hundred pages of records. Hope they have a fast fax machine with lots of paper!

The nausea the last couple of nights has had me up all night throwing up. It plays heck with my blood sugar levels (they tend to drop when this happens) plus my throat gets raw. Not sure if its the anitibiotic or the pancreas or the kidney infection or The Headache or just The Belly wanting attention. I think that is why I'm so whiney tonight. Or maybe it's the lousy weather today - my yard is flooded, my road is flooded, my septic tank is probably flooded, I'll be lucky if there isn't water under the house by the time it quits raining. Maybe I'll row to work tomorrow instead of drive! Thank heavens I live in the sinkhole ridden Ozarks - the water doesn't stay too long.

I've Got A Fever

The Only Prescription is More Cowbell!!

Have been feeling really tired, sorta thought it was just my digestive issues, but found out yesterday I was running a fever, and I'm running one today. Going to my PCP to verify that its not contagious, but I think I have been running one for several days. My boss has a handicapped son who is very succeptible to flus and I would be horrified if I passed something around at work and it got his boy sick. I really need the money from working, but I'll feel much better in my heart if I make sure I can't pass anything along before I go to work knowing I have a fever. Have taken some acetaminophin and it felt like it dropped the fever substantially.

Dr. Bellyfixer said it could just be the pancreatitis, since the pancreas sorta eats itself with digestive enzymes and then your body has to absorb the damage which can lead to fever...or it could be another UTI, or it could just be nothing. The Belly is really complaining today as it didn't like being poked on by Dr. Bellyfixer. The Headache is better since I "retuned" the occipital stimulator.

Enjoy the long and short versions of the "Cowbell Skit" from SNL. The link More_Cowbell at the bottom leads you to the official long version. Wishing cowbells could make me better, but watching Will Ferrell playing the cowbell is the next best thing.





More_Cowbell

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Washington University & Barnes Jewish

Wash U Rocks!

Saw a new gastroenterologist (Dr. Bellyfixer) today in St. Louis to discuss prognosis and strategies for my long term side effects from radiation. It was so nice to see someone who didn't try to convince me that radiation therapy was not the cause of my issues. He said he sees these side effects in persons treated with pelvic radation and also certain types of chemotherapy.

He told me that because there are multiple causes of the problems I have, medication therapies would have to be multiple also (generally I have tried one solution at a time which only ever partially worked). I came away with some hope that there were some remaining strategies still to be tried. The first thing I am trying is a drug that captures the free bile salts in your system (WelChol) and one that slows the motility of my digestive system (methscopolamine bromide), with permission to add Imodium to the mix if these do not do the job. The WelChol should also decrease my LDL levels and my HgA1c levels. That's lower my bad cholestrol and blood sugar average in plain English!!

Dr. Bellyfixer did tell me if my fecal incontinence continues to worsen, which is quite possible, that the only real solution is to have a surgical ostomy. He said he did not think I was at this point yet but it was best to start planning on it ahead of time. I hate to think that the only solution is surgical, but the colorectal surgeon had told me the same thing last summer. We discussed several strategies on ways to deal with this problem on a daily basis, and came up with a couple of new ideas.

We also discussed my pancreatitis. Since I have several relatives who died of pancreatic cancer and who did not drink at all, he said my pancreatitis might have an autoimmune/inherited inflammatory component. He stated that since I had already had four to five documented bouts of acute pancreatitis I maybe should have an esophageal ultrasound (EUS) every three to four years to keep track of it regardless of symptoms. Dr. Bellyfixer said pancreatic cancer is easily cured if caught early enough, but because it does not create a lot of symptoms it generally has already metastisized to neighboring organs before it is found (as in my relatives' cases). He was pleased I already had an appointment with Dr. Gnome to check on it.

Barnes Jewish (BJC Healthsystems) is the hospital Washington University works with, and is considered one of the top hospital systems in the United States - I believe #9 on US News and World Report 2009 listings. I found all the staff highly professional and Dr. Bellyfixer exceedingly helpful and friendly, and easy to discuss very personal health issues with.

We didn't discuss much about the pain/weakness of the legs, but perhaps I will need to find yet another specialist to deal with that. He did say that the nerve damage from radiation therapy will continue to worsen, and probably will not stabilize, and that this is as much a part of the diarrhea issues I have as the actual scarring from radiation. I appreciated the honesty. I have no problems facing hard truths and planning around them, but its difficult to make plans when you only get part of the picture. I'm sorta of an "OK - now what?" type of person, but I prefer to have the best information possible before going to the next stage.

When I actually come face to face with how many serious health issues I have, I find it hard to believe that this is ME, this person who is sick. While I get aggravated at the Dr. Dunces in this world I realize that I'm probably not the average patient with one or two problems that they see. I think I should be depressed, but I'm just tired. Too much driving today I think, plus it was free flu shot day today at the hospital so I think the entire population of St. Louis was in the lobby getting flu shots and clogging the adjacent streets and parking lots. Patience is a virtue that requires practice, and I got a lot of chances to practice today!

The Belly is complaining, and I was running a fever today - not sure if its from the pancreatitis or other issues, but will have to check it out tomorrow. I had to turn off my occipital stimulator because it makes me so sleepy driving, so The Headache is back in business now. Going to medicate and go to bed, so night all!

Too Much Hydration

How Much is Too Much?

To reduce The Belly pain from the pancreatitis, I was told to cut back on what I was eating. I wasn't eating very much, so cutting that out left me with liquids and some supplement like Ensure. I had been told that the pancreatitis might have been exacerbated by deydration and that I was to drink more liquids, so I thought - no food, but I can keep the liquids up!

The radiation damage to my intestines gives me problems with food digestion, motility, and excessive water loss through bowel movements. I have run into the problem today that I feared - too many liquids = excessive loss of liquid in the stools. I spent almost all morning at work in the bathroom, with at least 10 trips between 8 AM and 10:30 AM. I quit drinking any liquids at 10 AM, and have gone at least 10 more times since then. I left work and came home because everytime I sit down and I have to get up and go again, and you can't work like that, and you can't monopolize a public restroom like that. Thank heavens there are quite a few places I could pull off and go on the 45 minute ride home.

I'm feeling the beginnings of dehydration, and am now in the Catch 22 situation where I need more fluids, but if I increase the fluids, the fluid loss continues at a faster rate than I can replenish it. If I don't increase fluids, I will continue to lose fluids at this point and may continue to dehydrate anyway. What to do? I'm going to try the no-fluid route and see where I end up in a couple of hours. I know the more fluid route will end up with me on an IV in an ER and I just don't need another co-pay.

I started out the day in such great shape! I was up at 6:00 AM and ready for work at 7:00 AM, and if I hadn't run into some road construction I would have been at work before 8:00 AM. I was feeling up and good, The Belly pain was behaving because it hadn't had food to gnaw on for a couple of days. Then about 15 minutes after getting to work the waterworks started and haven't really let up yet.

The worst part is that you feel parched when you get dehydrated, yet I know that drinking more fluids doesn't work with me. I even tried Gatorade, but no help. I drank some briny water hoping salt would help restore my osmotic balance, but no help. Hoping I can dry up The Belly before I have to drive to St. Louis tomorrow, or I better figure on a six hour drive instead of a four hour drive to account for the rest stops!!!

Thank Heaven for Good Friends

An Adventure Without The Headache

A good friend called today that I have not seen for over a year. I have not had much good news to share, and since I knew that she had her own health issues, her daughter and grandchildren to worry about in addition to taking care of her aging parents I didn't want to make her worry more. She said she would come over and visit this afternoon.

The house was in disarray because I had not cleaned the floors or scrubbed the bathrooms since I had gone into the hospital last week. Luckily I had a good day today, so I scurried around cleaning and polishing before she came over. I was just folding some laundry as the last part of the quick cleanup when she knocked on the door. I almost felt like my old self again this morning as I scrubbed and mopped at lightning speed (well, not really lightning speed but pretty fast!).

My friend suggested we do something just for fun and thought maybe we could go to the local casino, run by the Quapaw Tribe of Oklahoma. Even though it is not very far away I had never been there. She said it was very nice and if The Headache interfered we would just head back home.

Casinos are like headache trigger headquarters, with flashing lights, bells and whistles sounding, and loud noises and lots and lots of tobacco smoke. Not an evironment I normally find myself in, but I thought - what the heck, I'm having a good day - why not?? We went, and while I didn't spend much money (I'm too cheap to be a good gambler) I had a good time watching my friend gamble. She had a blast, and I had fun too. She played some electronic game where the Fonz from Happy Days kept saying something to you, very amusing.

It's been over two years since I just did something for no reason except to enjoy myself. The Headache behaved itself, and since I refrained from eating today (thank you Ensure Extra Protein!) The Belly was OK too. After four hours I was ready to go home and we headed back. I did notice that although The Headache pain did not increase, at about three hours into the expedition my body temperature started to drop until I was just standing around shivering. For some reason this part of The Headache seems to continue even though the pain is not there - very weird. Suspect that it is the hypothalamus involvement.

I'm home feeling good and ready for another day tomorrow. Hope to work a full day, and then be ready for a trip to St. Louis Tuesday. Crossing my fingers, my toes and my eyes hoping I haven't pushed my luck too far today. Thanking my friend for prompting me to go and just be silly. I feel almost normal tonight.

I Luv My Occipital Stimulator

Headaches Diminishing

I love my occipital stimulator. Already my body is forgetting what non-stop 24/7 high level head pain was like. I don't even notice the stimulator sensation anymore unless I purposefully pay attention. Just like in the infomercial I "Set it and Forget it!!"

I still have pain flareups the stimulator doesn't help, but my daily constant head pain is down to about a three on my pain scale. This is less than it was a month ago, and I hope by the time six months post implant I will be down to a zero on the pain scale.

If I turn it off, the pain starts escalating within the hour. I seem to have about a half hour grace period where the stimulator still is effective when its off. I would love to be one of those people who actually become cured by using this, but my few trials with turning it off have all resulted with an increase of pain so I am not going to try again until after the six month mark. From the literature I have read concerning these stimulators for the type of headache I have (hemicrania continua) that maximum benefit may not be reached until six months of constant use.

I am so much better than I was last year at this time. I was getting desparate, knowing that I was not hardly able to think, let alone work with The Headache. The indomethacin was helping but I never really got to a therapeutic dose because The Belly interfered. I'm glad I went my own way and got a stimulator installed and didn't pay attention to the naysayers around me (including my own insurance company). Heaven had to be on my side, since I am the last person accepted into the study.

Still not eating much, but feeling better. Thank heavens the belly is behaving - as long as I don't try to eat that is... Hunger must be why I was thinking of the Rotisserie "Set It and Forget It" oven...

Going Down In Flames

Me and My Pancreas

I now have an appointment with Dr. Gnome in St. Louis on October 16th. I talked with his nurse, and they are requesting more records from my gastroenterologist's office since they didn't include anything from my recent hospitalization, or some of the lipase tests I have had over the last nine months.

Wasn't able to work a full day today as The Belly hurt bad enough that the mild pain killer I took at work didn't touch it, so I drove home and medicated with stronger stuff. This still did not completely kill the pain but it made it tolerable. The pain seems to increase in the evening, so the second dose I took at about 9:30 just isn't doing too much. I'm hesitant to go to the doctor about this before the Dr. Gnome visit because I run the risk of hospitalization again.

My daily meal plan at this time is one meal each day of a poached egg and a piece of toast with jelly no butter and about a third of a cup of applesauce, eaten with pancreatic enzymes. Starting to feel the effects of not being able to eat, rather weak, but I have had to do this for months before so I know it is possible. Have been hydrating much more as I was instructed in the hospital but this has worsened both the diarrhea and the incontinence issues I have from the radiation therapy.

I am going next Tuesday to Washington University in St. Louis to be seen concerning the long terms effects of radiation therapy. I found information while researching this for radiation neuritis in the lower spine, and this seems to match many of my leg symptoms. The problems are not resolving, but keep getting worse and I am concerned about what the end result will be. The weakness is a big issue, since continued standing and walking make it worse, making it harder and harder to travel and to do my work when I am at a client location where I have to walk and stand a great deal. I'm hoping these physicians will have some new ideas on what I can do to make the symptoms better tolerated even if we can't make them go away.

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!

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.

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!

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.

I've Consulted the Magic 8 Ball

MRI Jitters

My doctor had appealed Anthem's decision to not authorize a PET scan, I followed up this week with Anthem since the appeal was mailed to them April 2nd. The appeal is nowhere to be found. I had a denial of an appeal letter sent to me, but it could have been from the peer to peer review. I left voice mail with the appeal department and no-one ever got back with me. I talked to customer service and they didn't know what to do. I spoke with radiology precertification and they couldn't find it. No one at Anthem could tell me what the denial of appeal letter was denying - the peer to peer appeal, or the doctor's appeal. I think the appeal got sucked down into that giant black hole where all unpaid claims go.

I then called my oncologist because my GI doc had already ordered and completed an abdominal MRI because of the pancreatitis. I was hoping I wouldn't have to have any more testing and they could use this instead of a PET scan. They would use it, but I then needed to have a pelvis scan. I had that done yesterday. I had a tremendous headache but I got my brother to go with me to the MRI center so someone could drive.

Got the pelvic MRI done, and now the MRI center has called me asking me to come in first thing Monday (like 6:30 AM) to have some additional studies done by the request of the radiologist. When you have had cancer just having the radiologist need extra studies is anxiety provoking. I am trying to not panic (Serenity Now!) and have consulted the Magic 8 Ball on the internet, and the answer was encouraging.

The Headache is fairly bad today. I delayed taking some medication so I could make sure I could fill in at work for a gal who is off today. I'm paying for that delay this evening. I am sure that hearing from the MRI folks this evening is helping The Headache along. I threw up twice at work and there is nothing worse than puking in a toilet that your co-workers asses have been sitting on. That alone makes me nauseous thinking about it - and I'm full of phenergan!

The Belly is complaining also. It didn't like emptying in the work toilet either!

I am resolving not to obsess about the new studies at the MRI center. What will be will be, and what is already is, and worrying about things that may never happen is counter productive.

In one of the internet groups I belong to someone with the same headache type as I have said a combination of drugs is finally working for her - time release morphine and baclofen and parafon forte. She said her headache specialist thought that the baclofen and parafon forte would change the brain reaction to pain (sorta short circuit it) and it seems to be doing the job. She is young and has had this headache for years and years. I'm so happy she found some combination to help the pain!

Stavros Flatley Made Me Laugh

A Great Day Today

After seeing Susan Boyle's performance I have gotten hooked on Britain's Got Talent. I have found my new favorite man, Stavros Flately, and watched him perform his magic on stage. I haven't laughed so much in weeks, and won't be able to see Michael Flately the Lord of the Dance in the same light again. Stavros' young understudy deserves kudos also!

I was able to work a nine hour day today. Yeah!!! However, The Headache is letting me know that it is displeased this evening.

The Belly is behaving better. I think I have figured out that the recent Belly uprising is from the last toradol injection I had. No more toradol for me. The last few times I had injections the toradol didn't seem to help much anyhoo.

I get the trial occipital stimulator installed on May 6th at the Cleveland Clinic, and then go home and return to Cleveland in a week and have the stimulator de-installed on May 13th. I sure hope it helps The Headache pain because I have definitely run out of non-opiate options. I can't wash my hair for that week, so I will be going to work with bad hair days! I told them all I was going to wear a hat so I could then say I had Hat Hair.

Work has been so nice about all the time off I've been forced to take. I'm poor because I can't earn enough money because my old body won't let me and I have exhausted my time off, but rich because I work with a fantastic crew with great bosses. I don't even have to work by the break room anymore (I confess that with The Headache and The Belly both acting up I don't know if I could have taken break room cooking odors very well without medicating for nausea.) I have even adjusted to the extreme light situation in my area by hanging some artwork on the walls - it seems to deflect the harsh reflection from the white walls! AND I have a door to close if I need to screen out noise or odors. C'est Magnifique!