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.

Veterans Day

Armistice Day 2009

Whereas the 11th of November 1918, marked the cessation of the most destructive, sanguinary, and far reaching war in human annals and the resumption by the people of the United States of peaceful relations with other nations, which we hope may never again be severed, and

Whereas it is fitting that the recurring anniversary of this date should be commemorated with thanksgiving and prayer and exercises designed to perpetuate peace through good will and mutual understanding between nations; and

Whereas the legislatures of twenty-seven of our States have already declared November 11 to be a legal holiday: Therefore be it Resolved by the Senate (the House of Representatives concurring), that the President of the United States is requested to issue a proclamation calling upon the officials to display the flag of the United States on all Government buildings on November 11 and inviting the people of the United States to observe the day in schools and churches, or other suitable places, with appropriate ceremonies of friendly relations with all other peoples.

Having had the honor to work for the Department of Veterans Affairs and to meet a few remaining (at that time there were just a few hundred) World War I veterans, I just want to thank all the people who have served and who are currently serving this country in our Armed Forces. I also want to thank their families who also sacrifice so much to support their loved ones in their choice of service.

My time in Medical Administrative Services taught me a few lessons:

1. The cause must be great and worthy for us to risk the physical and mental health of our youth in times of war
2. Even 70 years after battle, post traumatic stress can still appear
3. The bravery and valor of those who serve in the armed forces is our greatest national treasure
4. We should never forget the sacrifices that have been made on our behalf by service men and women, including the ultimate sacrifice of death in battle.

I did discover that I'm not cut out to be a federal employee. That was the only job I have had in my life that I could not make more efficient! I loved working with the veterans (or as my New Jersey co-worker would say - Ve'erns) and was honored especially to know a WWI veteran (nicknamed "Peck") who came once a month even in his 90's to volunteer. In WWI units were made up from communities, and his unit was The Houn Dawgs, with the motto "Nobody Kicks Our Dawg". Peck was a founding member of the unit.

According to the history of the unit, they took about 25% to 50% casualties in the Battle of Argonne. The devastation to an entire generation of families in these rural towns created changes to how units were composed in WWII, to spread the risk across more units. The local school in Aurora Missouri uses their company emblem and motto for their school mascot. I find it touching that almost 100 years later they are still honoring their WWI soldiers. Found the story of this unit on a site about Aurora history:

Company M, 2nd Missouri Infantry of Aurora was called into action for World War I on August 5, 1917. While waiting to be shipped overseas, the Aurora infantrymen befriended a stray hound dog that eventually traveled overseas with them. The dog returned to Aurora with the group and the "Houn Dawg" became the official town mascot.

November Headache Blog Carnival Published

Thanks Again Diana Lee!

Diana Lee at Somebody Heal Me has done it again. Another edition of the Headache Blog Carnival is out, this time on Migraine Triggers. Diana takes the time to do this, even when she is busy battling her own headache demons.

Diana contributed a great article from her archives on headache hygene, and James Cottrill has some fantastic tips on how to read food labels. I did not realize there were so many different ways to label MSG. I knew it was often a hidden ingredient but never figured it could be labeled with all those descriptions. I managed to sneak my entry on triggers vs. symptoms in this month.

Not included in the blog carnival, but still relevant, is the blog entry on the discovery of a new food trigger by Chrissy at Through The Words of Chronic Pain. This is what inspired me to write about triggers also!

I will be leaving in the wee hours of the morning to go to KC tomorrow. About an hour and half sleep last night, and already sleepless tonight. Can't medicate because of the drive. Big Sigh!!

Shattered Brain

Broken Head

Lost day yesterday. It was my Mom's birthday, but either The Headache was making me very sick, or The Belly was. I think it was The Headache. Got through the morning OK, but the afternoon was bad. That evening my sister was kind enough to cook and host a birthday dinner for my 79 year old Mom, so I medicated so I could attend. I managed to make it through the meal, then crashed on her couch until we left. My brother drove so I could take enough medication to keep from ruining the evening for everyone else. All four of us were able to be there, so that was nice for my Mom.

Today The Headache is aggravating me. Sorta payback for last week travels, poor Wilsy passing on, and trying to have a relaxing evening out. The pain is not so bad, but the thought disorganization is not good. I have not taken any medications today so figure even though the pain is not so bad The Headache is creating havoc in my brain.

Worked a few hours from home this evening as I am having trouble getting to sleep. Tomorrow I work, then Tuesday morning I am in Kansas City early for the immunologist appointment, and Wednesday I go for the endoscopic ultrasound. Very tired, so I may medicate and head off to sleep soon. Trying hard not to use medication - the stimulator is doing 80% of the work medication did, but there are days I need the extra 20% to function. This day seems to be one of them.

Ah well, tomorrow will soon be here as it is almost 2 AM. Working towards getting back to a normal schedule next week. I Need to get back to a normal schedule, as the new install starts my hours will increase to more than full time. I will have to pump myself up and rev the head to get it working. Maybe super glue will help me put it all back together or else I can get a pull start like chainsaws use for my brain! My brain is definitely not as sharp as a chainsaw today, and I guess judging from this ad maybe I need some diet Mountain Dew to get my brain working and to avoid ferrets??

Triggers Vs. Symptoms

Getting Fenced In

While I do not currently have migraines, I had migraines for almost 30 years. At first I did not realize what was happening to me. I blamed everything for my spates of "illness" except migraines. During a yearly physical when I was in my early 20's a doctor diagnosed me with "common" migraines, a revelation that made me realize "Idiot, all those restaurants you went to couldn't possibly have given you food poisoning every time!"

Back then there wasn't a lot of material available to read about the causes of migraines, or triggers of migraines. There weren't a lot of medications available either. If caffergot didn't fix it, I was told there wasn't much else I could do except wait the migraine out. Since I never had an aura letting me know ahead of time that I had a migraine, the caffergot was not effective since by the time I realized I had a migraine my digestive system was no longer working and the pills were too little too late.

Over the years I realized that certain things would bring on a migraine. Since I often did not know I was having a migraine until the pain got intrusive it was very hard to differentiate a trigger or causitive factor from a symptom brought on by the migrainous process.

One of the ways I learned to test a trigger verses a symptom was to retest a suspected trigger at a later date. If the pain was recreated I added that trigger to the list of "things to avoid". Another trick was how quickly the pain became unbearable after the triggering event. If it was bad within two hours, that trigger was added to the list of "things to avoid".

If I noticed something that always worsened as the pain worsened (photophobia [sensitivity to light], hyperacusis or phonophobia [sensitivity to sound],osmophobia or dysosmia [sensitivity to odors]) I considered it a symptom, not a cause. Some sorta were both - like sensitivity to odors: certain petrochemicals and certain perfumes would start a cascade of pain within 20 minutes of smelling them, which put them in the trigger category. Others, like a sensitivity to Prell shampoo only occured during a migraine which put them in the symptom category.

Triggers that definitely caused a full blown migraines within two hours of exporsure for me were: raw onions, garlic, red wine, very good basalmic vinegar, mold, moldy or aged cheese, chocolate/cocoa, diesel engine fumes, WD40 lubricant, high levels of MSG and penicillin. Symptoms that were present only when a migraine was active were sensitivity to light, sensitivity to sound, sensitivity to all odors, and the inability to digest food.

Migraine sufferers have so much information available to them now. There are such great assessment tools and trigger information on the web its hard to imagine the days when you had to go to a good reference library and look up everyting in 20 year old medical books. The active blogging community adds some great resources for research also, and add a personal perspective that is missing from the research libary method of information gathering.

My current headache condition, hemicrania continua, does not have a triggering event. One thing does increase the frequency of severe pain and the severity of the pain and that is exercise/activity. The more I am active the worse things get. Weird, eh? Hoping you all have great weekends, and pain free days ahead. Wishing my triggers had been as cooperative as Roy Roger's horse!

Goodbye Dear Wilson

Sad Day Back from Travel

I was at a client Tuesday, Wednesday and part of the day today. My cat Wilson (who would have been 20 years old in December) had been failing in health the last few weeks. She was not in pain, she was just very old. This morning before I could get home Wilson passed on peacefully in her sleep.

When I got home, I had to try to dig a hole to bury Wilson in my pet cemetery out back. Thank heavens my brother helped, as my soil here in the Ozarks is 90% rock and 10% soil. You don't really dig holes, as much as you pry rocks out of the ground until a hole is made. We wrapped Wilson in her warm rug and placed her near my great dane Pepper's grave, and put some large stones from the selection we unearthed to mark the spot.

Wilsy was a sweet kitten, my white worm, the ice maiden who scorned all other cats and kittens but loved my little dachshund Augie. She was given to me 18 years ago by a lady I worked with who had to move to an apartment and could not keep Wilson. It took almost a year before Wilsy settled into her routine here at her home, but she was quite the queen kitty and ruled all she could survey. I shall miss her, but will meet her one day on the other side of the Rainbow Bridge.

I'm sad and tired, worn out from the week, and missing my Wils. I know she was ready to go, but I am never ready to let go. Ah well, tomorrow will be here before I know it and maybe tomorrow will be better, at least I keep telling myself that.

The Illusion of Control

Coasting through Life On Crazy Wheels

con·trol
Pronunciation: \kən-ˈtrōl\
Function: verb
a : to exercise restraining or directing influence over : regulate
b : to have power over : rule
c : to reduce the incidence or severity of especially to innocuous levels
(...control a disease)

I'm not sure if everyone knows what crazy wheels are - those are the types of wheels that are on shopping carts that can turn in any direction at anytime, regardless of what direction you are trying to push the cart. You think you are directing the cart where you want it to go, but at any second one of those wheels can lock and then you are dragging the cart around the store trying to force it down the aisles.

That recalcitrant cart is a metaphor for my life. I think I am in control. I do all the right things at the right times. I try to put my ducks in a row, plan ahead, be proactive. I go to great lengths to do c above - "reduce the incidence or severity of [my illnesses] especially to innocuous levels" - even fighting to find a way to get an occipital stimulator installed when I became convinced it was my best path to return to normalcy. Then something else goes wrong and since I am stuck on the path of "controlling" I continue pushing my protesting body to do what I think it should, not what it is inclined to do.

The measures I take do help - such as the occipital stimulator, but they just can't fix what is broken. I'm very fatigued this month, bad times with sleep or lack thereof, very little nutrition, and lots of ouchiness from different sources, so my grocery cart is maybe a little overloaded right now!

Maybe it is my hard headed Germanic heritage, but I have a hard time admitting that I am not in control. I never was in control, I just chose to believe the illusion of control. I feel like I'm rollerskating on a floor of marbles and sure footing does not exist. That Gene Kelly type of finesse, dancing in rollerskates in urban traffic, doesn't seem to exist for me but I can hope for future abilities to form.