Saturday, October 31, 2009
Wednesday, October 28, 2009
Sunday, October 25, 2009
Thursday, October 22, 2009
Wednesday, October 21, 2009
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.
Sunday, October 18, 2009
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!
Friday, October 16, 2009
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...
Wednesday, October 14, 2009
Tuesday, October 13, 2009
Monday, October 12, 2009
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:
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...
Sunday, October 11, 2009
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!
Thursday, October 8, 2009
Wednesday, October 7, 2009
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.
Shared via AddThis
Tuesday, October 6, 2009
Monday, October 5, 2009
Sunday, October 4, 2009
Saturday, October 3, 2009
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...