Headache Better, Belly Worse

More Tests More Waiting

I realized today it has been about 44 days since the last "Bad Headache Day" posting. I've had some flare ups since then, especially when I was in hospital with pancreatitis, but the pain is much less than it was. I still have daily head pain, but now it is around a two on my pain scale most days. Compared to this time last year the pain was staying at about an eight to nine on my pain scale all day and all night. I was contemplating having to quit work because I was so non functional from the pain. Now The Headache has receded to a tolerable level I am optimistically hoping it is whipped. Yeah Occipital Stimulator!

Was able to do a phone interview for the occipital stimulator study intead of flying to Cleveland. Lilly the study coordinator went to bat for me - she's such a nice lady! I have two more visits after this one - the next visit will be in the spring, I will get the headache diary back and keep it for another month. Hopefully by then the ever present nagging headache may have disappeared. I realize that my range of disability from the headache has improved sooooo much since I got my buzzer installed. Now if I can just get The Belly to cooperate.

I have been home sick almost this entire week. I feel like I am letting my bosses and my work mates down because this stinky painful pancreas is flaring up. Dr. Gnome's office called and said I may have to have another ERCP, which I am NOT looking forward to. I am severly allergic to the dye they use with the fluoroscope during these procedures. The only time I had one done, I came out of it with The Headache that never goes away!

Dr. Gnome ordered a bunch of blood tests, which I had done at the lab they faxed the orders to. Several of the tests will need to be sent out to Mayo's (they must be weird ones) so I don't know when the results will come in. The lab techs thought some might be in by Monday. My arms are still bruised up by the blood tests and IV's from being in the hospital and the blood tests I had about a week ago, so the poor lab techs had a hard time finding a vein. I try to be very patient about the blood testing process as my veins seem to know they are being stuck and either dissapear or dry up when a needle gets near. I can't figure out how my body does this. It is extremely frustrating!

The blood tests seemed to be looking for an inflammatory or autoimmune or hereditary cause for the chronic pancreatitis. Dr. Gnome's PA had told me if I have autoimmune pancreatitis they won't need to do an ERCP - that they can treat me with prednisone. I don't like the side effects of prednisone, but would be happy to avoid an ERCP.

I want to get whatever I need done over with, so I can get back to work like a real person and contribute. I have been soooo sick feeling this week and taking pain medication and anti nausea medication that my mind isn't working very well. We are a small company, and right now they need all hands on board. I'm at the point just like last year with The Headache I am almost ready to throw in the towel and quit trying to work. I keep hoping that something will fix The Belly the same way something fixed The Headache.

Well, tomorrow is another day and next week may bring answers to The Belly dilemma or it may just create more questions. I will try and behave myself, and eat very little this weekend so I will be at my best come Monday.

Gastric Emptying Test

Green Glowing Glutenous Oatmeal

Did my gastric emptying test today. I ate a cup of oatmeal they added radioactive markers (radioisotopes)to, and then had to lay as motionless as possible under a large sensor/scan that measured the radiation. It was pretty painful, as the pancreatitis hurts worse when I lay down compared to sitting up, but I survived.

Don't know how long it was supposed to take. I had my choice of scrambled eggs or oatmeal and since carbohydrates hurt The Belly less than proteins I chose the oatmeal. They tried to make it more tasty using the brown sugar and maple flavor oatmeal, but the isotope had a sort of off taste. Maybe it was my imagination, or perhaps it was the chlorinated water?? But I made myself swallow it. The scan itself took less than an hour.

I could see the scan as it progressed. If you have had a nuclear scan you will know what I mean - the radioactive substance shows up as little points, brighter where they are gathered in bunches (like in my stomach). I could see everytime another bunch of oatmeal made its way into my intestinal system. It was like glup, glup, glup lump, lump, lump. Pretty soon the intestines were lit up like a Christmas tree.

I was already in pain from the test, so this evening I actually ate a bite of spaghetti and broccoli for supper. Then I was REALLY in pain! The Headache decided to pitch a fit too, but I was able to crank up the voltage and stop it from getting out of hand.

Hoping to get to sleep sometime this evening. Have already used trammadol, but I don't think it is strong enough. I will take a second dose in another hour. I may have to see someone for adequate pain management and nutritional counseling if this keeps up. I probably should have gone to the ER last Friday, but I just don't have time right now to spend another three or four days in a hospital just to be stuck on IV's and heavy duty medication. I will go back on liquids tomorrow and tough it out for the next few days. I need to be at our new clients Wednesday and possible Thursday so I will just have to hold out.

The guy at the radiology department said he would try and get the scan read today and over to Dr. Hawkeye for review. Not sure if Dr. Hawkeye is in the area every week, as he has offices in several cities.

Got my Mom to take her pnuemovax vaccination today. It is good for five years, so I'm glad she took it. Tried to get the flu shot for her, but apparently they are out. I was put on the list to receive the H1N1 shot, but will have to ferret out flu vaccinations somewhere else I guess. I also got her to repeat her chest Xray from two months ago (they saw a spot and needed to re-Xray to check for growth). I worry that her cancer has returned in a new spot, but she has also had pneumonia several times in her life, so it could be scarring from that!

Listened to a nice piece about health blogging and online tracking of health conditions on NPR. There was some discussion of transparency in healthcare. I don't think a lot of practioners really want transparency. One of the issues surrounding true electronic health records is that some doctors don't want patients to have access to everything, AND they don't want other doctors to view their practices and treatments. I would imagine those that abuse the system and provider/patient privilege to their own financial advantage do not want to have their over utilization or unnecessary testing exposed to their colleagues.

Barf Bag Envy

No More Cankles!

My Erpiness and Belly pain continue. Today has been minimal food day. I tried to eat a real sandwich yesterday and it didn't taste nearly so well coming up as it had going down. I am wishing I had some of these deluxe barf bags to take with me to the client next week. The nausea hits so hard and fast I fear erping in public.

I guess I shouldn't be embarrased about public puking. I have spewed my stomach contents in many places over the years, due to migraines. When I had migraines (instead of the hemicrania continua I have now) they were called "common migraines" or migraines without aura. They would often sneak up on me, and I would be somewhere doing something and then BOOM a full blown migraine.

The nausea often was my first clue that I actually was having a migraine - the pain grew gradually up to the point I got reaaally reaaally sea sick and then it was a skyrocket of pain for the next three to eight hours. I have thrown up in restaurants, cars, office trashcans, public toilets, parking lots, and the side of the road.

My worst experience was pulling my car over in front of this house hopping out of the car and projectile vomiting - bleah bleah bleah - and then looking up to see a horrified family having a picnic in their front lawn. What can you do? I weakly waved and hopped back in my car and drove quickly away! I had to pull over and just wait the migraine out in a parking lot down the street. Another time a friend and I were in Ft. Lauderdale and had just gotten through walking around downtown and were driving back to the hotel when the migraine hit. I warned him that I was going to pake, he didn't believe me until I started to heave - he quickly pulled the rental car over but not before I let loose on the passenger door. Eeeyou! Next time I told him I thought a migraine was coming on he listened!

I may have to just starve myself at the client's and stick to strictly fluids. I have been drinking some Ensure high protein but even with the pancreatic enzymes The Belly hurts. I've done it before, so I can do it again - it just takes inner discipline. On the plus side I have lost an additional four pounds this week. Woo Hoo! I have now lost all the weight I gained from taking steroids so long last year.

I go back November 10th to see the immunologists in Kansas City, and then I go for the endoscopic ultrasound of my pancreas. Hoping for pretty good news on these two fronts - my hives are actually better than they have been in two years! However my face is swollen and broken out with a rash of sorts - not sure if it is from the antibiotics or there is another reason. Hoping it goes away with the kidney infection that wasn't an infection. I have ankles again, very glad to get rid of the cankles I was sporting. Guess even tho I officially had no infection, the anitbiotic seems to have done the trick.

A weekend of rest, a week of travel, and then back home again to rest. I'm tired already and am just waiting for The Belly to calm down enough to sleep. Next week is going to be a long week I am afraid. Hoping the cankles don't come back, or I may need to get "The Circulation Booster" to get rid of them!

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...