System Down

Missing my Electricity Fix

My stimulator controller is officially broken.  I can have the stimulator set at HIGH, which after a while causes pain from "over stimulation",or I can turn it off.  It is now off.  The Headache pain has returned in all its glory without the stimulator to fool my brain.  I'm trying to go without any medication tonight so I can go into work tomorrow.  Not sure if this will work as I'm not certain I can bear with the pain very well.

I missed work today.  I have been up and then back to drugged slumber most of the day.  I didn't even catch on to the time until a friend called and I happened to hear the phone ring.  It was almost five o'clock - where did the time go?  Strong medication is not always my friend.

My new stimulator controller won't be in Springfield until MONDAY.  That means it will be 4 days until I can get my headache back in submission.  Luckily the A-Team and Dr. Hannibal Smith are on the short list of people that St. Jude works with so the controller is going to be Fed-ex'd to them. 

I may call Dr. Smith and see if anyone there has a suggested strategy to get me through the next few days without a stimulator.  I hate to be just zonked out of my mind for four days - but if the alternative is unbearable pain, I'm going to zonk out!  I'm using antihistimines tonight to see if the pain can be controlled with out the heavy hitters, but it's like trying to put out a forest fire with a water pistol - not too effective.

Hoping everyone else has a pain free Friday and a good weekend!

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.

The Belly Blues

Another Lost Day

Stayed home today. The Belly didn't want me to do much but take pain medication. I tried all morning to get going without any medication, but finally at noon realized that I needed to just give in to the inevitable and take my trammadol. I have slept most of the day, and the trammadol is just able to take the edge off The Belly pain.

The Headache is still bothering me but I also have the stimulator turned down to the barely there settings. The muscles in the back of my neck are finally feeling normal again, so I will turn up the stimulator tomorrow and see if I can corral The Headache.

The Belly is really kicking a fit today. Wasn't too great yesterday afternoon. Hoping that maybe resting today and tonight will put it back to normal. If it doesn't get better tomorrow I will go and have my enzymes checked. Taking a vacation from eating should help.

I had hoped to work from home Monday night, but The Belly interfered. I medicated last night hoping to be able to work today, but lift off was not acheived. Hoping to go to work tomorrow!

Last year at this time I was recovering from a bout of acute pancreatitis AND The Headache was not controlled. I was considering trying for disability because I was in so much pain. This year The Headache is almost under control, and The Belly is my main concern. Wonder what will be my main concern next year? Hoping it won't be health related! I think it would be great if next year I just have to worry about where to go on vacation!

All my vacation time has been spent being ill the last couple of years. I would like to go on a real vacation and sit on a sunny beach listening to the ocean and feeling the warm breeze....or maybe up in the mountains, in a cabin near a clear stream with the air scented with cedar. Ahhh, just thinking about it makes me more relaxed!

Return of The Cankles

The Horror!!

Trying to work this week and get a full 40 hours or more in, so far it has been successful. The biggest drawback is I am retaining fluids and my cankles have returned. Oh, the humanity!! Will the cankle torture never end?

It seems the sicker I feel the canklier my ankles get. I wonder if there is a pancreas/cankle syndrome out there somewhere?? I'm rankled about my cankles. I always had thin ankles and very small feet, now they are turning into stubby cankley blobs that won't fit into my shoes.

While I'm ranting - shoes are a very sore issue with me. I wear American size five shoes. Apparently all the retailers of shoes have gotten together and have decided not to stock my size shoes. I have been told by countless clerks to shop in the little girls section. I'm 50 years old - do they think I want shoes with hearts and shiney stars and Hannah Montana on them?

It's past midnight again, another sleepless night. Very productive day at work - did a three hour lecture on medical business practices and organization this morning. Wishing The Belly pain would go away. The Headache is behaving since the cold front whistled in last night. I'm feeling more upbeat - getting back to work always makes me happy. Have I mentioned before that I love my job?? The boss is recruiting to fill two new positions - one for my area of responsibility. Yeah! Wish I knew someone who would fit the bill - I know people, but either they can't travel, or they don't work well with others, or they like the job where they are at now.

Going to take another pill and see if sleep will come...The Belly burning gets worse at night for some reason. Working towards making it to Saturday without going to an emergency room.

Hole in One

Brain Leakage

Haven't been able to sleep, The Belly hurts, then The Headache, then my neuropathy, then The Belly, ad infinitum. Very tired, have taken two different medication cocktails, waiting for four AM when I can take some meds again.

Wishing I could just open my skull and give my brain a big THUMP or perhaps a noogie. My thinking is kinda slow today as if my brains are just oozing slowly out of my skull, although I went to work and was productive. I only worked a few hours, getting ready for another client visit travel session next week. My ankles are full of fluid so not sure if the antibiotic I am taking is very effective for my illness.

Hoping that The Belly and The Headache behave themselves next week, as it is a multi night stay. The Headache is just misbehaving with the stabbing lightening swift pain but The Belly is in full burning spasmodic pain mode. Maybe I will just have applesauce to eat next week!

I'm so disappointed that my endurance is so low. I wanted to have the occipital stimulator fully functional before the install, and it seems to be, however I am so tired I'm like the walking dead. I can't tell if the fatigue is from lack of sleep, bad kidney infection, or The Belly. Maybe the week after next I will get some good news from the EUS. I really could use some good news!!

Pain Spikes

Pounding Head

Having sharp spikes of pain today, but The Headache is at a dull roar, or maybe an incessant bark. The sharp pains are in my temple region and they come in flurries. I just bear with them and I hope that one day soon they will be gone. Had quite a few today, but maybe its the aftermath of Monday night - a migraine hangover?

No more right side pain for The Headache so hopefully yesterday was a one time event. Worked most of the day, but spent a lot of it in meetings. Meetings - a sure time waster if there ever was one, but at least these were just with our small team of installers, so the meetings were to the point. My preference is no meetings but when they can't be avoided short and to the point is the best.

Looking forward to the rest of the week. I have a lot of work lined up and I'm ready to roll! Typical of a day after a three day holiday I was busy on the phones when not in a meeting. Hoping The Headache stays at bay. Next week I am going to go on site with a customer for a couple of days, and then go to Cleveland. Not much time for support or programming, so I want to get ahead of the curve this week, so I can play catch up the week after next.

Bad Headache Day 38 2009

Payback for Being Chauffeur

Had a wonderful time at the family reunion last weekend. Saw my favorite uncle in the whole world, my monther's younger brother Pood, and got to visit with him for a few minutes. My Mom was Miss Queen Bee talking to everyone while Pood was the king of the festival. I was pleased to see my cousin Bob there also, as he has had a couple of very bad strokes. His son and grandsons were there too. One of his grandsons looked just like Bob did at that age!

The Headache tried to be ugly Saturday night, but I had brought some crafts to do in the hotel room just in case - to keep my hands busy and my mind off The Headache. They worked pretty OK. I couldn't really medicate as I was chauffeur for Mom. Sunday was wonderful - The Headache was away, buzzed off by my protector the occipital stimulator. Sunday evening late The Headache tried a comeback, but I took some medication and pushed it back. We had a surprise visit earilier Sunday night from my niece and her husband at the hotel and luckily The Headache didn't interfere!

Monday driving back home The Headache started up again. By the time I got home I was tired and The Headache was really starting to smack on my brain. I had to go to the grocery store, and took someone else with me, and didn't think I would be able to make it back home, but I did. Yeah!!! Then I tried medicating for The Headache. Too little too late. I got freezing cold (The Headache likes me very uncomfortable) and then the nausea/throwing up started. After emptying everything out I just took, I was able to get in the least nauseating, least painful position and stayed there for a few hours.

The scary part is that I had new pain this time I have not had before. The right side of my head exploded with pain. Never had this happen before. Migraines have always been on the left side, my hemicrania continua is on the left side. Where did this "new" pain come from? Did I just have some kind of side shifting migraine with The Headache? Will have to call my headache specialist and see what's happening I guess. Don't want to start down this road after getting the left side stomped out.

This morning am posting this as I wait for The Headache to subside enought I can go to work. I think I will be leaving in about 30 minutes as some of the pain is lessening. I thought I would be ending up in the ER but managed to tough it out last night - never ever go to the ER on a holiday weekend if you can avoid it! They are overcrowded and understaffed because no place else is available (at least in my area!). How do I know? I've had to be there a few times in the last two years.....

Dream Baby That The Headache is Gone

Channeling Roy Orbison

Got my eyes dilated for a "slit lamp" eye exam and the sunglasses I got to drive home reminded me of Roy Orbison. I am taking plaquenil for the autoimmune hives, and I'm diabetic (although just barely diabetic) so it was a good idea. Had a great exam, got a prescription for eye glasses, but the doctor said I could continue wearing my +1.50 dimestore reading glasses, as that was what the prescription was. I told him at the rate I lose glasses, the prescription option was not a very good idea - easier to replace at a few dollars a pair.

Sunday was not a good day, but I was able to round up The Headache and put it out to pasture. Spent Sunday night head down in the toilet "selling Buicks" as my late father would say, but I slept two hours, got my act together and headed to work Monday. Slept all Monday evening and Monday night, more rested today. Having a shadow headache this evening and some periods of severe pain. Sigh.

I have had a great week at work so far, getting a lot of projects completed and off my desk, and even a little bug stomping (program fixes) here and there. Not only do I love my job and who I work for, but our customers are great as well, and I love talking to them. They are quick to respond to questions, and even trouble shoot their problems before they get to me. Yeah customers!!! I think they missed me while I was working so few hours a week. I have started an exercise program, trying to walk a brisk mile each day at work.

I'm going to Dream, Baby, that The Headache has thrown its fit for the next couple of weeks, and tonight is just an aftershock. Dreaming its done-dee, buh bye, done for, pushing up daisies, sending email to gophers, fried to a crisp. Using all my positive imagery tricks!!

I have the big reunion for my Mom's family this weekend. I think there are going to be over a hundred there now. They are quite the musical bunch and several are bringing their guitars, drums, and whatever else they have. I have a video camera, and will dust it off and take some video. I will have to watch out, because male pattern baldness dominates this family so the light boucing off heads may play heck with the camera. My own brothers and one nephew will be some of the bright shiny bouncers!

I will return to Cleveland on September 17th. After that I should get my complete programming and not have to do the electronic headache diary anymore. Yeah! I am having trouble getting it to transmit - I suspect the modem that uses the phone lines is getting a little wonky. I think the sponsors had such good results they are wanting to get finished and publish quickly, hoping for approval by insurance companies.

Infested by Meerkats

Their Burrows Run Deep

I envision I am invaded by meerkats, incessantly digging their burrows through the left side of my brain. At night they crowd into their hidey holes and wake up at three AM to go to the bathroom, which is why The Headache chooses that time to wake up too. (I am just guessing that meerkats have small bladders.) The reason The Headache pain get worse in leaps and bounds during the day is because the meerkats get alarmed very easily and hop back in their burrows and are pesky and get in meerkat fights. I see the occipital stimulator as an electric fence for the meerkats, keeping them in their proper space and stopping them from digging more holes!

Can you tell it's been one of those days, one of those nights, where I can't think, I can't do, I can't go to sleep, and I don't want to be awake. Getting goofy here, but maybe having a meerkat haven for a head is a good way to visualize The Headache. Maybe I can invent a jackal to stick its head in the holes and and have it scare the meerkats away to someone else's head. That's how my doggie Augie scares the moles out of my yard!

Cutting back on my work hours this week until after I go to the Cleveland yet once more this month. I may try and increase my hours next week to 40 again. I just did 4 1/2 hours of work today, and got some productive time in, and fixed an old problem for a client. I may have to extend my short term disability one more month if The Headache doesn't behave itself. The Headache is somewhat better today but that has me dreading Thursday when I will be traveling back from Cleveland because the pain will probably be building up by then.

Cleveland is an OK place, but I'm getting tired of traveling there. I will have been there three times in the last thirty days. Hope the next time is a couple of months into the future so I have a little time to catch up financially.

Goals I Haz Dem 2

Fantastic Week Up to Now

Not only have I met my work goals so far, I have exceeded them! I was able to put in a 10 hour day yesterday and a 9 hour day today. Not up to my preheadache standards, but an improvement over the last six months. I don't know if I will do 10 hours straight again this week. Last night The Headache let me know it was displeased with me, and I had to medicate early on - ruining my weekly Antiques Roadshow watching experience. The only television show I look forward to watching and I was too medicated to concentrate.

We are such dedicated Antiques Roadshow watchers at my house that we watch shows that we have seen three or four times just as if they were brand new. I'm not sure what our fascination is with this show. The entire family watches it - no matter where we live it is on our schedules. Everything stops when the Antiques Roadshow is on! My little dachshund even knows the theme music for it, and will get out certain squeaky toys when it is on that he uses only for Antiques Roadshow time. I think he does it because it is hard to get my attention when I am enthralled by the parade of unusual possessions and appraisals.

I am feeling better than I have in months and months and months, even having to medicate quite a bit last night was better than having to medicate like that all the time. Could it be the occipital stimulator implant? Well, it is three weeks post surgery and I have improved my activity levels a lot in the last three weeks. Since it is a blind study I will leave you to speculate - is my stimulator actually working, or am I suffering from a placebo effect?

I definitely am still experiencing pain, and in the same pattern with still some extreme pain levels. Medication wise I have decreased amounts about 50%, activity wise I have increased about 35%. That's really the first improvement I have had on both fronts since The Headache started in 2007.

Hoping to reach the rest of my goals this week, and keep The Headache at bay. WooHoo!!! I'm back in the saddle again! Yippee Ti Yi Yo!!!

Productive Day

Working my way Back to Eight Hours

A good day at work, got several goals accomplished. Almost feel like my old self again. Didn't work eight hours, but worked more than yesterday. I want to be up to eight hours daily by the end of this month.

The incisions are healing and itching from the occipital stimulator surgery. The hives are still there from the allergic reaction and itching. I wasn't supposed to change the dressings but I did anyway - I couldn't stand the old icky things hanging on me. I wasn't supposed to wash my hair but I figured a way to do it - thank God for Glad Press'n Seal Wrap! I wrapped my neck dressing with Press'n Seal and then very carefully washed my hair. I was glad the Glad Wrap did the job!

I feel like a bear - I need a tree that I can put my back against and itch. I find myself looking at things like corners of doors, and thinking I could itch my back on that! Hoping much of the itchiness will be gone when the stitches are out. And yes, they are stitches, not staples. Nicely and neatly tied stitches!

Can't wait to take a shower. I feel grungy. Ready for the stitches to be OUT. Grrrrrrrrrrr.