Hole in One

Brain Leakage

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

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

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

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

Yabba Dabba Doo!

I have Fred Flinstone Feet

I feel some better today with a day of antibiotics under my belt, even if the urologist insists I don't have an infection. My feet however are swelling and getting worse. I have lost my ankles today, and now have feet like Fred Flintstone - a fat leg going down to a foot with no ankle!

The CT scan done in the ER the other day shows some swelling of my kidneys. If I don't have an infection, did I pass another kidney stone?? The tests show me slightly anemic with an elevated white blood cell count with protein, blood, and white blood cells in the urine. Not sure what that indicates - looks like an infection to me but I guess I'm not a urologist. I ran a fever last night and this morning, and the urologist's nurse said I should get with my PCP (which I already had done). I'm thinking that this specialist is one that I can just write off. He is more interested in doing costly procedures than actually following me for real issues. His nurse said he considers blood in the urine normal. Well, its not normal for me! I guess if the ankles keep getting bigger I may have to see somebody again.

Still pretty nauseated, am going to medicate again and go to bed pretty soon. I've had some rice and canned chicken for supper, and it did not sit well with me. However my lipase levels were close to the upper range of normal from the ER labs, so that is a good thing. The pain is better today, again probably from the antibiotics I am taking for a non-existent infection.

The Headache is not cooperating tonight. It may be the cause of the nausea rather than The Belly??

At the ER the other night I met a lady who was patiently waiting to be seen to receive a shot of NuBain. Every time I am tempted to start feeling sorry for myself, God seems to give me a reality check by reminding me in someway there are persons with worse problems.

This lady had had migraines since the age of 3. She took almost daily injections of DHE to control her migraines, and she also had a healed head injury, a destructive rheumatic condition, and intercranial pressure that could not be drained. She said she had just moved to town from a little town about 30 miles from where I live, and appreciated being able to go to an emergency room, even when they made the headache patients wait and wait and wait.

I told her that in general protocol at this ER, headaches rank lower than trauma or flu or heart attacks and strokes because they are pretty sure you aren't going to keel over and die. She said she was having to go to the ER every so many days for the NuBain. The headache clinic in town isn't open in the evenings or weekends, and they wouldn't prescribe a rescue medication for her other than the DHE.

We both decided that ER's should have a migraine waiting room - dark and quiet, away from crying babies and TV's blaring and people talking and odors. I'm not sure why they don't - every time I am at an ER there is someone there with a migraine. The hours it takes to be seen seem like an eternity in that environment. They are building a new emergency section at the hospital, maybe I will make a case to the administrators and medical directors to see if they could do this. I think there needs to be a migraine waiting room in every ER.

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!

Rainy Sunday

Blade Runner?

Dreaming of ice skating, skimming on feather thin blades, twisting in the air to alight on tiny tip toe and spinning in the light. Not sure of the meaning of the dream, but part of the imagery was the jagged tips of the skates used to brake and stop. Larger than life, they glimmered in icy silver jackolantern grins of zig zag metal, digging into the soft ice directing my gliding path but failing to halt my frosty dance. Maybe I just need to slow down?? Hard to slow down when you are already just moving at a crawl.

Rainy today and a restful Sunday. Have just slept and sat, doing nothing today. I have not had to medicate The Headache or The Belly today so that bodes well for tomorrow. Going to bed in a few minutes hoping to sleep some more.

Talked with my sister, who has a skunk infestation under her house. If anyone has any ideas on how to get rid of skunks, let me know! We have tried all the tricks we knew of, and my sister is down to either trying to live trap the skunks or kill the skunks. Last winter the lady skunk had wild skunk sex underneath my sister's house and knocked the duct work down and then sprayed because she got scared. Peeyew!! This is the third year this has happened and my sister is pretty sure they are the same skunk family each year. They are nice fat skunks who are used to central heat in the winter!

Ready for a new week. Hoping for a productive week at work and that my electrified head buzzer will keep The Headache at bay.

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.

Bad Headache Day #41 2009

Too Much Travel?

Been a bad day today, although with the help of the stimulator I managed to stay at work all day and be somewhat productive. I think yesterday's travel was a little too much, 2 hours driving in the morning, two more hours in the late afternoon.

The clients were wonderful, as I expected. Very responsive, and we got a lot accomplished so I didn't think it was necessary to be there two days. I'm going to do some more setup at the office, and need to get a decision from the higher ups as to which box/database the clients need to enter their new master files into. My compatriot from work who traveled with me is a wonderful outgoing programmer and she is very organized and helpful, so I had a great trip work wise.

The Headache was very strong last night and tonight my medication isn't working and my stimulator isn't keeping up. I tried to eat some food today, and maybe its my pancreas and The Belly acting up not The Headache?? Can't tell, the pain is just increasing despite all my efforts. I took my usual dose that should knock me out at 8 PM but it doesn't seem to be doing the trick, and I'm not sure if I should take anymore until about midnight. The nausea is especially bad so maybe if I toss my cookies it will help. ewwwwww.

I think it has almost been a month since the last really bad headache day - a new record for The Headache! The pain is bad, but the stimulator helps a great deal. I'll mess with the settings in a little bit and see if I can ward off the worst of this. I'm having a lot of left eye pain right now, and from past experience that is not a good symptom. My body seems to be losing the memory of what the terrible extremes of pain I have been in the last couple of years feels like. For this I am grateful. Thank you St. Jude/ANS and Cleveland Clinic!

I feel like Medusa tonight, with the tendrils of pain from The Headache starring as the snakes. I wish I could stare into a mirror and turn myself into stone and then The Headache wouldn't hurt as bad! Of course my head is all bone and no brain anyway so I'm not sure if it was all rock it would be any better.

On the Road Again

Hopefully on the Mend

Tomorrow I'm back on the road for work. A day or two at a new client's location, doing some preliminary work to get ready for the upcoming installation. Hoping that The Belly and The Headache behave themselves. I am bringing many changes of clothes in case my myriad digestive problems manifest themselves with urgency.

These new clients are very organized and it is always great to go and see them, as a lot gets accomplished in a short time. I know they are nervous about the change over to our system, but they are preparing in the best manner possible and will do great!

Driving is a problem for me lately. I fall asleep at the wheel, even on my normal 45 minute commute. I have to pull over and sleep and then go again. I thought it was the occipital stimulator but now I am beginning to think it is another manifestation of The Headache. I had the stimulator turned down to the imperceptable level for the last couple of days to rest my head which had been getting sore from over stimulation - kinda like when you wear a ponytail too tight and your scalp gets ouchy - and I still almost fell asleep going home tonight. I guess I am just going to have to factor in extra time to get anywhere because of this. If it gets worse I may have to quit driving until I can figure out what is going on, as I don't want to hurt myself or anyone else from my own negligence.

My new compounded medicine seems to work just fine. I don't think I am absorbing as much medication as I should but am afraid to double dose myself. The effect of the transdermal delivery is different, very subtle as if it takes a while to get where it needs to go. Hoping this will put the whammy on the remnants of The Headache!

P.S. I can't think of this song without thinking of my Aunt Vi, who I remember in one of her joyful moments singing this song while she danced in her houseslippers and housedress at my uncle's house, swishing her skirt and doing some fancy footwork! There was a lady who lived life in the moment.

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...

Eye of Newt and Toe of Frog

Found a Compounding Pharmacy

My boss used to be a compounding pharmacist, so I had an inside track on who in the area did compounding. If you have never heard of this, a compound pharmacy can make up a drug combination especially to order like a physician specifically requests. Drugs you hear about often on talk shows and the internet are bio-identical hormones. These are generally specially compounded for each individual per the physician's prescription. Not all pharmacies provide this service. In rural areas like where I live probably none of the pharmacies are compouding pharmacies.

The pharmacy I went to today first checked to make sure that the script I had could be compounded into a transdermal skin cream or gel. Then they had to check to see if they could get the drugs in a formula that would be compatible with the dosage needed. Then they had to check to see if the drugs were available, in stock, or orderable. THEN they had to check to see what they would charge.

It will cost me $75.00 for one month's worth (the pharmacist thought one month's supply might last me two or more months). The pharmacy will not bill my insurance for me for compounded drugs, which sorta tells me that insurance companies generally don't pay for compounded drugs. I will have to pay up front, and then do a "member file" for reimbursement from my insurance company. They did have to order one of the drugs, and they think they will have it ready for me Monday or Tuesday. I'm anxious to see if this method of bypassing The Belly will make a difference or not.

Tomorrow the bosses have paid for all employees to go to a big motivational seminar - an all day thing. It's very sweet that they want all of to go and "Get Motivated!" - maybe I can get all motivated and fired up and full of energy! I used to be that way all the time. I feel like a boulder in a mountain stream, worn down by the rushing water until I'm a pebble, tumbling along with the current. And that water is reeeeeeaaaallly COLD!

Piercing Pains

Guess They are Here to Stay

Went to see my headache specialist in Kansas City. I've decided to nickname her Doc Optimist as she has a very hopeful outlook and is quite cheery. Poor Doc Optimist was sick with a cold today, but she saw me anyway. What a pleasure the appointment was. I showed up 15 minutes before the appointment, went back to the room, was seen at 3:00 on the dot and out in 15 minutes, with my next appointment for January.

Discussed the problems I have been having to Doc Optimist, especially the piercing pains I have been having on the left side. She said that jabs and jolts headaches often appear with hemicrania continua, and now that the other pain is less I am noticing these. Unfortunately the only medication that works for the jabs and jolts is indomethacin which I can't take because it gave me pancreatitis and upset The Belly. I told her I could take the pain, I just have to bear down and deal with it. As long as it goes away at some point, I have pretty good pain tolerance. She said before we give up trying to treat it she had quite a few tricks to try.

I also described the right sided headaches I have been having. They are not migraines, at least not like the migraines I have had in the past. Doc Optimist does not think they are cluster headaches but said the hemicrania continua can switch sides. I told her that these are not continuous at least not yet. I would be horrified to get right sided hemicrania continua after whooping the left side. I hope they were just an aberration or maybe pancreatitis induced, since I haven't had one in about 10 days. Doc Optimist said if they continue we might try Relpax to see if they were migraine related instead of hemicrania continua related. She wants to see if a medication change will help first.

I told her I was not working full time yet, but that I had other health problems that might be interfering in addition to The Headache - especially The Belly at this time. Doc Optimist prescribed some vistaryl/phenergan to be compounded in a cream to be absorbed through the skin. She said that since The Belly is kicking a fit, I may not be absorbing medication properly and we were going to bypass the GI tract entirely. Now I have to find a compounding pharmacy...sigh. She wanted me to use suppositories but since I don't have an intact anal sphincter anymore because of the radiation induced fibrosis I told her that may not be a very good idea.

Doc Optimist had interesting insight on my cold spells that correspond to The Headache. She said many other headache patients have similar symptoms - either get really really cold or really really hot. She speculates that this is because the autonomic nervous system controls and the hypothalmus reside in the central brain area that is thought to be activated by severe headaches. She said even though I am not experiencing the pain of The Headache, The Headache is still there (which I could tell if I turned the stimulator off long enough!) and it is still creating the same symptoms - I have just short circuited the pain. I told her that my eye still swells and my nostril runs, so I knew that some autonomic symptoms were hanging around, not surprised the shivers were part of The Headache. I guess I will have to figure out how to deal with the shivers, Doc Optimist had no suggestions on how to help with this. Perhaps a lovely cup of hot chocolate or warm tea would do the trick!

I started off the morning with the remnants of Monday's headache, but The Headache got steadily better all day. Starting to get worse again now, but I have had a very long day with driving in wet rainy conditions so no wonder! I am going to medicate in a few minutes and hopefully won't be up till 3:00 AM with The Headache's siren call awakening me. Ready to go to work early tomorrow!

All in all a great visit, feeling that even if The Headache is changing (and I have hopes that the stimulator still has more magic to perform on the stabbing pains) there are steps to take and movement towards 100% normal. Now if Dr. Gnome's visit goes as well.....

Woo Hoo!! My 200th Post!

Who Woulda Thunk It??

This is my 200th post. I started this blog in January and I wasn't sure if I would keep it up. I thought it would be stressful to write and a chore to do. I found blogging to be exactly the opposite.

When I have been at my lowest points writing and illustrating another entry has kept me moving forward. When the pain is at the point that I am plumb wackydoodles being able to read different blogs about how others cope with unsurmountable obstacles helps me work through the pain and the panic. When yet another doctor appointment looms or more bad news comes I know I can toss my cares away into another posting and feel more optimistic. Comments by persons passing through my blog space keep me humbly grateful that there are so many kind interesting intelligent and funny people in this world, and that I get to interact with them. I am educated, entertained, saddened, and inspired by the many blogs I follow - impressed by the excellent quality, diversity and inventive nature of my fellow bloggers.

Despite the wondernment that I have had enough nonsense in me to write 200 entries, today has been a bad day. The Headache has been trying to come alive, he Belly feels like my pancreas is taking nips out of my innards, I had an incontinent episode at work (went home 45 min drive changed and drove back 45 mins) soooo embarrasing, I only slept two hours last night, and I feel like I don't even have enough energy to move because The Legs aren't cooperating. I feel exhausted. I have taken a cocktail of benedryl, phenergan, and trammadol and it is just barely decreasing the pain. I am going to change the settings on my stimulator one more time to see if it can put The Headache to sleep for the night.

On an upnote, Diana Lee at Somebody Heal Me has done it again and has put together another great Blog Carnival! I don't know how she gets these all organized and perfectly done each month, but I am so happy she does!! This month's theme is alternative therapies. I found some intriguing information, makes me wish that I lived in a more metropolitan area where some of these resources are available! A very interesting post was from MaxJerz at Rhymes with Migraine discussing the difference between alternative and complementary medicine or treatments. I definitely have been using these terms incorrectly as interchangeable! There were some other great links on other subjects too.

If this post is full of typos and misspelled words I am going to blame The Headache and The Meds. I've proof read it a couple of times, but when The Headache kicks in that is a gesture in futility!! I've got the jimmy legs so will be dancing with pain again tonight. Pain wouldn't be such a bad dance partner except he keeps stepping on my toes!!

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...

Cold and Wet

Can't Get Warm

The weather is cold and wet. I generally love the fall - its my favorite time of the year - foggy rainy weather, crisp cold mornings, crunchy leaves underfoot, forests with their fall coats on looking fancy. I just don't seem to have much cold tolerance this fall. The cold wet wind seems to reach right inside of me and set my shiver center going.

There were big goings on in town today, as it is the annual "Apple Butter Makin' Days" a few miles from where I live. It's dangerous to drive in town when there are so many visitors trying to find their way to the festivities, so I generally avoid the whole festival, and the crowds which I do not care for.

The apple butter is made by boiling chopped up apples in a copper kettle for hours over an open fire. Last year I was told that they have started purchasing already peeled and sliced apples in order to produce enough apple butter.

How the locals make apple butter, and how I was brought up to make it are two different methods. The farm I grew up on had about 10 apple trees, so we canned stewed apples and applesauce and applebutter on a fairly regular basis. The local version is more the consistency of applesauce and gets a lot of its flavor and color from cinnamon. How I was taught to make it was to keep reducing and reducing the apple sauce until it thickened and turned very dark (a sort of carmelization of the natural and added sugar). My applebutter was a lot thicker than what they sell, but I had a lot more time and a significantly fewer quarts to can and no copper kettle and outdoor fire...

The Headache has behaved today and so has The Belly. I must be on the road to wellness!

Going to take my last antibiotic and go to bed. Had a good day today, looking forward to tomorrow!

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

Shared via AddThis

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.