Celebrating Family

The Motley Crew

Had a great Thanksgiving dinner Friday evening with my nephew herding his two boys, and his two nephews, my sister, her husband and their puppy Gracie, both of my brothers, and my brother's cat Butterball. I took extra pain medication so I could eat something and join the celebration, so I had a good time in spite of The Belly. The Headache is behaving itself this weekend - so I am only facing pain on one front rather than two.

My brothers did all the cooking and cleaning up. My younger brother was the chief chef, with my older brother bringing up the rear with support and deviled eggs. All I did was try to straighten up a bit of the house, dust and mop floors. Very stress free Thanksgiving, everyone had a good time and relaxed and my niece-puppy Gracie was the belle of the ball. She had my great nephews rolling around giggling because she wanted to kiss their ears! I have to say I have a bunch of well behaved young gentlemen in the family, they were very considerate of their old great-grandmother and great-aunt!

It's four AM on Sunday, and I haven't slept a wink. I have a slight feeling of anxiety and forboding, and I'm not sure why. My heart seems to be racing a million miles an hour, and The Belly is rather painful. Maybe it is the pancreatitis since I have been bold enough to eat some real food the last couple of days. Maybe its because I seem to have won the battle of The Headache, only to lose the battle of The Belly.

I'm discouraged, but I haven't thrown in the towel yet. I refuse to believe the only solution to The Belly is to take pain killers constantly, which is about where I'm at now. On bad days the pain killer I am using (tramadol) does not seem to be quite enough. Surely there is a way I can manipulate the pancreatitic enzymes I am taking to have a more pain free life. Maybe there is a peripheral nerve zapper just for the pancreas?? I can only dream.

Happy Thanksgiving

Smoked Turkey!

My brothers are so kind, this week they are taking on the task of Thanksgiving dinner. We won't be having it today, but tomorrow night because one of my brother's son and grandsons will be coming over, and my sister and her husband and their very very spoiled extra cute puppy Gracie.

Pictured is the turkey, which my younger brother is smoking today - apparently it is a many hour process. It has been smoking with apple wood chips for about three hours so far, but apparently won't be finished until this evening sometime. He said it will be color of dark mahogony when it is complete. On the menu is a spiral cut ham, smoked turkey, home canned green beans, "party" potatoes (my brother from Cedar Rapids says its a staple there), relish trays (a tradition in our family), deviled eggs (my older brother's specialty), and homemade cheesecakes (chocolate/carmel turtle and kiwi varieties) raisin pie and black walunt chocolate pie.

I am trying to clean house today, but am just going to do what I can do, and that will have to be what it is. I have stayed home all week, working from home more each day. Monday was especially bad, but each day is getting better - I was able to eat a small portion of meat last night! Woo Hoo!!! Hoping I can eat some Thanksgiving dinner tomorrow.

Today is a day of reflection, and reaffirmation of the positive things in my life. I am especially thankful for:

My family, friends, and my furry family
My home, even as messy as it currently is
Days of good health
My job, which I love AND my employers, who are fantastic
My blogging friends in particular and the blogging community in general
Computers - I remember the days BEFORE personal computers
Sunshiney fall days
God's place in my daily life
Silk quilted coverlets so warm and light!
Occipital Stimulators and those who
made getting mine possible
All my other (and many) healthcare providers
Potato Peelers and Tater Mashers

The list could go on and on, but I've got to try to clean some more. I was resting a bit to write this and now I feel that I can return to picking up, sweeping, dusting, and mopping. It's amazing how dirty the floor seems to get when you can't keep up with your weekly routine!

Reminder to Self: RELAX

Female Cycle and Endorphins

Not too great of a weekend. This latest pancreatitis exacerbation has left me with fatigue that won't stop and pain that won't let me sleep. I am going to take another trammadol in a few minutes to see if that will let the mind/pain connection break. Am drinking a lot of Ensure, it's really expensive. I think it would be cheaper to have alcoholic pancreatitis so I could QUIT buying something instead of adding to the pile of remedies.

The Headache is behaving itself this weekend. I've had to change the stimulator settings a few times, but it's done a pretty good job. I've not had to medicate for head pain at all, with The Headache staying at a tolerable 3 out of 10.

Thinking of migraines and how mine followed my monthly cycle and disappeared with the removal of my ovaries. I was wondering if your body's natural endorphins (I know of one dedicated cyclist that works dreadfully hard to maximize her natural endorphins) are effected by ovulation and menstruation. Endorphins are your body's natural pain killers.

I found a research article by Kathy Lemley of Marquette concerning the relationship between excercise, endorphins, and pain perception. She states on page 12 that a study found that certain endorphins are slightly lower in the luteal (last) phase of the menstrual cycle. This stage occurs after the folicle stimulation hormone (FSH) and luteinizing hormone (LH) spike dramatically with ovulation. Strangely enough, drugs which are used for fertility treatment to increase FSH & LH levels have a less common side effect of severe, throbbing headaches. A study in Egypt showed a correlation between higher FSH and LH levels with female migraine patients vs. controls. Male migrainuers exhibited higher FSH levels than the controls.

Since perimenopause/menopause can cause extreme fluctuations of reproductive hormones, I wonder if this is why some women experience flares of uncontrollable migraines during this period of their reproductive lives, while others get complete relief of migraines. I also wonder if there is a connection between LH and FSH and migraine severity and controllability. There is also a corresponding spike in progesterone levels in the luteal phase, and I know from the type of endometrial cancer I had that I did not have proper progeterone levels.

Didn't see a lot of literature out there, perhaps this has been explored and found to be a dead end? Strange roads the internet leads you down some nights! I will probably wake up in the morning and wonder what wacky drug mediated thought process was going on with this post!

Hope you all have a pain free Thanksgiving week, and safe travels, and that your migraines will behave!

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.

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.