Life's Not a Teddy Bear Picnic

Using up one of my allotted Self Pity Days

Very sad tonight.  Not sure if it is the pain, the futility, the medication, the fatigue, the hunger, or the insensitivity of my family that is making me use up one of my precious self pity days.  Could it be a combination of all?  Yes indeed it could.

I am tired to the limp rag stage of fatigue. Didn't work today because of pain and medication for pain.  I cannot sleep due to the pain (even with oxycontin 2x daily) and am contemplating just not taking any pain medication tomorrow so I can work.  My bosses have been wonderful, but I feel I am letting them down too.  I am going to have to shrug off this mantel of guilt and just do what I am able to do, and ignore the rest.  I guess I will see how far I can push myself with no food, very little liquids and no pain medication.

I was selfishly counting on a little concern on how I was doing when I got home, rather than insistance on instant return to shuttle driver and provider of all needs.  My mother tries, but she is getting to the age where I am truthfully more concerned about her wellbeing when I am gone.   Just feeling the loneliness and isolation of chronic illness through a cloud of pain, nausea, and fatigue.

My bosses and friends have been great, and I am sure my family was much more supportive than I am remembering in the deep darkness of the night.  Just worried where the future is going to take me.  I was much sicker much longer this time, and was released without really having my issues resolved, mostly due to the fact that all the consulting physicians were on vacation during the 4th holiday and I needed to get back home and back to work.  Going to work tomorrow and Friday and just take it as it comes. 

Was told I would need to go back to Dr. Gnome in St. Louis again.  I can't even face the thought of the drive for the appointment and then the logistics if anything had to be done.  Too much to do this summer for work, no time to take for non emergency treatment.  Ah well, I will go be sad for a while longer, as my self pity day is not done yet, even though my family would think I was being self indulgent and selfish.  Yes I am, and I have given myself permission to be so today.

The teddy bear picnic song and dreams were a theme throughout my hospitalization this time, maybe because I was so hungry!  I kept having drugged dreams about the teddy bear picnic, maybe wishing I could go out in the woods in disguise and have a picnic with the teddy bears!

Tired and Mouse Infested

But At Least I Don't Have Skunks

Today only worked a few hours, and had to decide not to go to my scheduled training session at a client's. It's very disappointing, but I just am not able to suck it up today to go tomorrow (which is today now I guess!).

I'm feeling very very tired, yet I'm unable to sit still because I am very definitely having Belly issues which include pain. That Belly is just a nuisance lately. Maybe I should just get a food magazine and stare at pictures of food and just imagine I was eating something. Eating isn't getting me much except pain, so maybe imaginary eating would just give me imaginary pain!

I heard back from Dr. Gnomes office about my blood test for autoimmune pancreatitis. I officially don't have autoimmune pancreatitis, just stinky old uncurable chronic pancreatitis. Their suggestion (since I did not want to take time off for another ERCP) is to keep eating a low fat diet and taking pain medication. If it gets where I can't bear the pain or feel much worse then I need to schedule another ERCP, although they recommended I have one now.

I am not eager to repeat the ERCP process since I had such a bad allergic reaction last time to the dye they use for the fluoroscope during the ERCP. I'm not sure what another ERCP would accomplish, unless they would stint the pancreatic duct. I don't want the down time for an ERCP either - last time it was a week in the hospital and a week to recover and I came out of the procedure with The Headache so heaven knows what I would come out with this time.

My pain control at this time is inadequate. I am in pain most of the time, and especially bad at night. The perscription for trammadol was just for occassional use, not for the dosages I am taking every day. I made an appointment with my PCP for Thursday morning to see if I can find some other alternative to what I am doing now. If I could get trammadol in time release form (I know they make that) it might give me better control of overall pain.

The Headache is acting up today, and of all things I got pins and needles all down my right side today. It lasted about 15 minutes and is the opposite side from The Headache so would be the side controlled by that portion of the brain. I wonder if its just another new manifestation of The Headache just like the scintillating scotoma I had the other day. I am having more right sided head pain again also. I'm afraid that my trammadol might be creating a drug headache, but it could also be The Headache morphing into something else less noxious. That would be great, so I'm going to keep that thought foremost!

I heard Mr. Mouse again last night. Augie my dachshund mole hunter extraordinaire is ignoring Mr. Mouse. I think he has made some kind of deal with Mr. Mouse not to catch him just like Garfield the Cat in the comics. My sister with the ongoing skunk issue gave me a new insight into my mouse problem - at least I don't have skunks mating and living under my house. She is running a skunk bordello if you can judge by the amount of wild skunk loving you can hear under her office floor! Mr. Mouse is quiet and does not seem to be smelly, so that's a plus. And he doesn't appear to have any visitors which is also an improvement on the skunks.

Good Day Bad Night

Stomach Stress

Worked a full day today and then some, have another client visit Monday to train. Needed to prep my materials, print the handouts, setup examples in the training database to train on - a pretty full day in normal circumstances. So today was complicated with an unplanned meeting, helping a coworker out with a problem, and a large support issue that was almost impossible to complete because the secure vpn connection I needed kept going down. AUUUGH!

Maybe that's why The Belly and The Headache are going gangbusters tonight. Despite taking anti-nausea medication I have been tossing my cookies (quite literally - I actually ate a cookie at Christmas desert day at work!). My hives are breaking out big time to boot in spite of taking antihistimines to decrease them. My plaquenil doesn't seem to be helping this outbreak much.

I did do the happy dance at work today because I whipped out a couple of special reports for clients in spite of the chaos of my day. I'm pretty fast when all my brain cells are firing.

All my blood tests seem to be in that Dr. Gnome ordered, and hopefully his office has them by now. Cholesterol and triglyceride levels are great - not surprising since I haven't been able to eat much fat in my diet for years! I show signs of systemic inflammation, no surprise there. I have low levels of some weird antibodies but nothing looks significant to me. To my layman's eye it doesn't seem that anything pops out as a cause of the chronic pancreatitis. I was hoping it would, because it is simple to treat autoimmune pancreatitis, and once treated it sorta goes away. Guess I have common garden variety chronic pancreatitis which has no cure. I will follow up with Dr. Gnome's office Monday if I have time.

I've taken the maximum medication I can imbibe for the next three to four hours. Wish I was tougher, and The Belly was less touchy. Need to improve because I have things I need to do this weekend.

My older brother was so nice, he went into the garage and put up some of my Christmas decorations including a couple of trees with lights and some wreaths. He didn't seem to find any ornaments, and I'm not sure what happened to them last year as The Headache was going full tilt when I put up the decorations in January. Our mom was quite pleased with the Christmas decor. My younger brother has been playing Christmas songs all week to try to get us in the mood. Maybe I will get in the spirit but right now don't have the energy required.

Endoscopic UltraSound Day

Pre Procedure Torture Chamber

Had my Endoscopic Ultrasound done today, at a hospital outpatient center I had never been to. The people there were great, the doctor doing the EUS was great, but the room I had to wait in after getting into a gown and getting an IV in was a headache sufferer torture chamber.

The Headache was pretty bad this morning. Woke up with it already at a 5 on my pain scale. I've been getting spoiled with it hovering around a three to four most days, but yesterday I had driven to Kansas City for my immunologist appointment and I think the drive was just too much, even though my brother drove part way back for me. That appointment when great, with the plaquenil I am taking to slightly suppress my immune system working for the most part to eliminate my chronic hives. I don't have to go back for six months! Yeah for that!! The Headache was starting it's little dance with me yesterday afternoon, and continued today.

The room today where they took my history and inserted the IV was brightly lit with flourescents and there was this electrical buzz that was constant. After an hour of torture I called a nurse in and asked her to turn off the light, thinking that it was a bad ballast in the overhead light. Nope. The door right behind the head of my bed apparently was a utility closet with some type of electrical device that buzzed loudly and unwavering. I asked if I could have an ax and I would open the door and chop it to bits, but the nurses wouldn't let me. I told them I was sorry they had to work with that noise. After the other patient in the holding room was taken out for his procedure, a kind nurse wheeled me over to that side as far away from the noise as she could get me. I told her I should have brought earplugs and an eye mask! Luckily after another 30 minutes of excruciating nauseating buzzing they came and took me back to the endoscopy room.

I'm what is know in the healthcare biz as a "bad stick" meaning I am hard to get an IV started on and hard to draw blood from. My veins roll, my veins are tough, my veins disappear as soon as a needle starts towards them, and will dry up when they finally get something started. I'm so bad the bloodmobiles don't want me to participate as I take up too many resources just to get a pint of blood! Today I was slightly dehydrated which made it worse. The average for me is three tries to get an IV started, today it took four and two nurses. I told the nurses I was going to get targets tatooed around the spots that I know they can get an IV started, and when these become no good I will have a big X tatooed across them. They laughed. I never tell people the first time they try to stick me, as some think it jinx's them, but at the second and subsequent sticks I try to point out where we had success the last few times. I'm very patient because I know it is as frustrating to them as painful to me.

They gave me versed to knock me out and I think fentanyl for pain. Unfortunately the fentanyl wore off at about 10:30 tonight, and I'm trying to calm down my aggravated pancreas with some trammadol. It's not strong enough, but it's what I have on hand so it will have to do! If this post is a little disjointed and my typing and spelling stink, I'm gonna blame it on the pain meds. Between The Belly pain and The Headache and the not so effective pain medication I'm not doing so great.

The GI doc was quite funny and nice, but not as cudley cute as Dr. Gnome. I think I am going to call this one Dr. Hawkeye after the Alan Alda character on MASH. Dr. Hawkeye came out and talked with my brother (who was the designated diver) and me afterwards. I don't remember, but my brother said that there were no signs of tumors, psuedocysts, stones, calcifications, or necrosis. The pancreas did show up as inflammed (no surprise there!). Dr. Hawkeye thought perhaps my GI motility issues from radiation is causing malabsorption issues that are damaging the pancreas. Hadn't thought of that but it could very well be possible. The sphincterotomy was in great shape, so I don't have to have another one done to fix it (no return Dr. Gnome visit I guess).

Dr. Hawkeye did not recommend any changes to my diet ( very low fat) or enzymes. He was thinking about scheduling me for another test on digestive mobility where they have you injest food and they time it through your system. My usual is about 20 minutes from entrance into the body to exit from the body. Pretty quick transit. He thinks we may be able to prescribe something in addition to what I am taking to slow this down. He didn't give my brother a diagnosis other than saying there was inflammation, but someone wrote chronic pancreatitis on the envelope that had my ultrasound images in it. I suspect that will be the diagnosis, but will wait on the final report.

I'm afraid taking the indomethacin and toradol too long after pancreatitis started while waiting on the installation of the stimulator probably helped to push my picky pancreas over the edge. It was my choice to make, and I had actually tried to withdraw from the indomethacin in December last year while inpatient for pancreatitis, and the headache pain was so bad, they had to reinstate it. I guess I'm paying for decreased head pain with increased belly pain. Thank heavens for the stimulator!

Hoping to go to work tomorrow. I think I have had a few hours sleep today because of the pain relief and versed so hoping I will be full of energy and vitality in the morning. The last trammadol is starting to work, so I will be going night night in just a bit.

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...

Going Down In Flames

Me and My Pancreas

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

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

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

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

Message from Dr. Gnome's Office

Do I get to Pay with Mushrooms?

Had a message on my answering maching from Dr. Gnome's office when I got home from work today. I'm to call, and I hope setup an appointment. I'll find out tomorrow. Wonder if Dr. Gnome rides a fox to work, or comes in by raven?

I think I'm a bit of a gnome myself, so perhaps I will get myself a big tall red hat and stand around the garden on the lookout for slugs, snails, and other varmints. I wonder if Smurfs are a variety of gnome or a creature unto themselves? I wouldn't mind being a Smurf either since they are such a lovely blue color and are just three apples high!

Kinda goofy this evening. The Belly is complaining but The Headache is behaving. Got quite a bit of work done today but have a lot more to do tomorrow. Having a hard time sitting still, but need to get to sleep!

ERCP Gnomes

Yet Another Specialist

Before The Headache, I had problems with pancreatitis. The problems started in 2006, got worse in 2007 and then I had a pancreatic and billiary sphincterotomy for papillary stenosis (Sphinter of Oddi Dysfunction Type I) done by ERCP in November 2007. I came out of that procedure with The Headache, but the pancreatitis seemed to resolve itself.

I was hospitalized this month for acute pancreatitis, and now am told I need to see the ERCP specialist again. This is my third bad flare up of pancreatitis in less than a year, and my second hospitalization, so I guess something needs to be done, but I'm not looking forward to another procedure. I was hoping the pancreas would calm down after I quit taking the indomethacin and the toradol, but no such luck. I'm not sure what can be done at this point. When I had the sphincterotomy I was told that 100% of these would need to be redone at some point. Just wondering if I have gotten to that point....

The ERCP specialist (nickname Dr. Gnome) is very well-respected and skilled. From the demerol drugged memories I have of him from 2007 he looked like a little yard gnome - apple cheeked, happy, with a cute little curl on his forhead. I was sitting way up in the air on a flouroscope table so he is also foreshortened in my memory, making him yard gnomishly small. He had a surgical hat on, not a big red pointy hat, which was a disapointment. I sure hope I didn't tell him how cute he was, but knowing me and demerol I'll bet I did! My brother told me that Dr. Gnome was not short at all, but I just can't get that image of him standing there in his fluoroscope apron with his tidy surgical garb on looking like he was about three feet tall, out of my head. He was soooooo cute!

Dr. Gnome's office is supposed to call my gastroenterologist's office to get this scheduled. The last time I went to see Dr. Gnome I thought it was just a consultation but nope, the next day I had the ERCP and pancreatic manometry and the sphincterotomy done. I wasn't prepared for that, but this time I am going to ask more questions about the appointment.

I'm not as down this week as last, have just a little more energy and not quite as exhausted. Wasn't able to work yesterday, but worked today, and hope to work a full day tomorrow and the rest of the week. I'm just sick and tired of being sick and tired.

The Headache is behaving itself so far this week, with every day having some painful jabbing spikes of pain, but overall pain levels are way way way down. Wishing I could say the same for The Belly.