Down for The count

Up and Ready for Round Two

Caught the flu either on the flight to Michigan or at my uncle's funeral.  Have had a week that is just sorta hazy right now.  Respiratory virus I am sure.  My sister who had this a few weeks ago was told it was a cold, not a flu, so the flu shot doesn't cover it.  Bummer.

I hate that I was stuck traveling, spewing virus everywhere I went.  I would have been sick at home or at work, so the sick part doesn't matter, but I hate possibly exposing people to this.  I ran high fevers Friday night after getting home, and all day Saturday, so sick I didn't want to move.  Today I am still very sick, but the fever is down some and I can breathe a little better.  I sincerely hope I have not given this to anyone else.  I tried to be SO careful, kept cleaning my hands with sanitizer, covering my mouth but I must have been a large bag of escaping viruses on Friday coming back on the plane.  Just hoping the lower respiratory part doesn't get worse that is where it seems to be stuck now.  Plenty dehydrated, trying to stock up on fluids having a hard time getting them down.

Had some unnecessary drama I won't go into here when I got home from the funeral.  That on top of traveling, on top of being sick, on top of being on my feet, on top of not being able to breathe, on top of having to drive drive drive makes me feel like I have been run over by a steamroller.  The IM phenergan did keep me from throwing up all through the central United States on a plane, but giving yourself those shots sure hurts!  I am getting tired of being everyone's solution to every crisis, but maybe that's because I'm SO DARNED SICK!  I guess I'm just whiney today. sigh.

At least I am at the spot in the cartoon where (after being run over by the steamroller) you come out pressed flat and pop back to three dimensions!!!  Woo Hoo!

Freezing in the Sunlight

Can't Get Warm

I think my pain levels are increasing because I am unable to get warm, and this is one of the warmest areas of the United States.  Beautiful sunshine, and my co-workers are hot, and here I am running the heater in my hotel room at 85 degrees and I'm still cold.  Don't know why I get cold when I hurt but I do.  Inability to get warm is a sign its pain related and not real cold.

I fell in my hotel room yesterday morning because my lower legs are somewhat numb yet I am having increasing pain at the same time.  Banged up my knee and injured my pride but it's a sign how dangerous having numb feet with poor reflexes can be.  Third day of travel and standing and I forgot my cane this morning.   I will be sure to remember it tomorrow.

I am so tired that I try to sit as much as possible while working at the client.  They are such nice folks, and have been super fun to work with - quick learners.  I just wish I knew more Spanish because I can pick up a word here or there from the Spanish speakers but its a mystery to me exactly what they are saying.  For some reason, just hearing it in Spanish makes mundane comments sound like such fun!  I am envious of people who can speak more than one language fluently.  I think it shows great flexibility of the brain and mine is about as flexible as a deflated football.

I am staying at a very nice, new hotel, but there are bugs - some kind of little beetle - running around my room tonight.  I have killed several until I just don't have the heart to kill anymore.  Too big to be bedbugs, they remind me of box elder bugs back in Missouri.  Just giving me the creeps....I just know one will crawl on me when I'm asleep.  I'm sure they are harmless, but ick is all I can say.

Have tried to eat at restaurants the last couple of days. Can't do it - The Belly doth protest and the hives have started swarming, along with the bugs in my motel room.

I am extremely fatigued which is why I have been trying to eat - I am very hungry so thought maybe that is part of the reason I am so tired.  I haven't been too successful the last two days, as nothing is staying with me.  Just wish I could sleep better and have more energy.

The legs are not happy tonight because I forgot that durn cane.  I may medicate - hoping that I will wake up in plenty of time tomorrow.  Wishing I could get warm and stay that way!

The bugs are increasing, so I called the front desk.  I'm too tired to move rooms, asking if they could have someone spray tomorrow while I am gone.  The front desk guy said don't squash them, they are stinky.  Uh oh, too late.  Might not get very much sleep tonight, not sure if I want to sleep in drugged slumber while the attack of the stinky box elder looking bugs progresses!  Big Sigh.

Cold and Wet

Can't Get Warm

The weather is cold and wet. I generally love the fall - its my favorite time of the year - foggy rainy weather, crisp cold mornings, crunchy leaves underfoot, forests with their fall coats on looking fancy. I just don't seem to have much cold tolerance this fall. The cold wet wind seems to reach right inside of me and set my shiver center going.

There were big goings on in town today, as it is the annual "Apple Butter Makin' Days" a few miles from where I live. It's dangerous to drive in town when there are so many visitors trying to find their way to the festivities, so I generally avoid the whole festival, and the crowds which I do not care for.

The apple butter is made by boiling chopped up apples in a copper kettle for hours over an open fire. Last year I was told that they have started purchasing already peeled and sliced apples in order to produce enough apple butter.

How the locals make apple butter, and how I was brought up to make it are two different methods. The farm I grew up on had about 10 apple trees, so we canned stewed apples and applesauce and applebutter on a fairly regular basis. The local version is more the consistency of applesauce and gets a lot of its flavor and color from cinnamon. How I was taught to make it was to keep reducing and reducing the apple sauce until it thickened and turned very dark (a sort of carmelization of the natural and added sugar). My applebutter was a lot thicker than what they sell, but I had a lot more time and a significantly fewer quarts to can and no copper kettle and outdoor fire...

The Headache has behaved today and so has The Belly. I must be on the road to wellness!

Going to take my last antibiotic and go to bed. Had a good day today, looking forward to tomorrow!

Bad Headache Day #40 2009

Pancreatitis Attacks Again

Haven't been feeling too great since last week. I thought it was just overexertion, going to a client's location, flying to and from Cleveland, and still being able to do chores over the weekend. Monday I was feeling just kind of blah, and Tuesday started out that way too. By noon Tuesday I started having stomach spasms and by 2:30 I had to call it quits at work, and head down to urgent care.

I asked them to check my lipase levels because I had been having chest pain and back pain for several days in addition to the spasms I was having that day. Sure enough my lipase came back high - at least 4 times higher than my regular high lipase levels, and so what I thought would be a simple urgent care stop so I would know that it was or was not pancreatitis (if pancreatitis you go NPO [nothing orally], if indigestion you take something like prilosec and liquid Maalox) and know how to proceed. I didn't have a clue it was as high as it was. I went from urgent care directly to the hospital.

I don't drink alcohol, I don't smoke, I drink very little caffeine, I eat a low fat diet (for the most part) and I quit the medications that I thought were giving me pancreatitis. The Belly just decided it wanted attention because I have been very careful not to aggravate it. I wonder if the episode a few weeks ago where I went to the ER and was vomiting for hours was really pancreatitis and not kidney stones. No way to tell now.

My reaction to The Belly pain is similar to my reaction to The Headache - I got very cold and my blood pressure dropped. The hospital room was glacial and my roommate had just had surgery so bless her heart she was hot, so they even brought in a fan to make the cold air colder. I froze to death while waiting for the enzymes to go back to normal and the pain to dissapper. No matter how many covers I had I couldn't get warm. It felt like there should be icicles dripping off my hospital bed.

The Headache transformed into a whole head monster headache yesterday. I think this is a side effect of having pancreatitis. Every bad episode The Belly has given me a horrendous headache occured, even before I got The Headache in 2007. I spent almost five hours yesterday just throwing up stomach acid (I had nothing to eat or drink) before I got a requested change of medication. One big dose of benedryl and phenergan and I was able to drift off to never vomit land and get a little sleep. I had been getting dilaudid for pain management, but I think The Headache didn't like dilaudid so well. Sometimes dilaudid will put me out for hours but The Headache decides to keep on rolling and I wake up in very bad shape - like yesterday. I told them no more dilaudid, a request they seemed surprised to get.

I am still in quite a bit of pain, but was able to hold some food down today, so I got sprung from the hospital. Woo Hoo! Now I am at home, comfortably warm. The Headache is still hurting quite a bit but I have the occipital stimulator on high and have been taking benedryl and phenergan and trammadol to knock back The Belly pain. The facial pain has been very bad this episode.

The gastroenterologist that took my case says that the biliary sludge I had when I had my sphincerotomy done is a life long problem, and wants me to follow up with my pancreas specialist in St. Louis. The gastro doc also said that I could have had a stone or sludge gumming up the works, since I don't have a lot of risk factors for pancreatitis.

I am tired of 2009 already. I want it to be 2010 - a new year without these old problems.

Sleepless Night

The Headache From Hell

I'm very tired this evening. I slept some of the day, but The Headache is still bouncing around my brain. I'm trying to wait it out. If I can just get the pain under control I think I will be able to sleep.

The lidocaine patches aren't making The Headache pain worse. I am much relieved. When you have multiple pain regions they seem to echo off each other, increasing pain with each echo. The lidocaine patch stops one major echo point so the shoulder blade pain is no longer feeding back into The Headache pain. Thank heavens!

I have had the stimulator set on my new stimulator setting since this afternoon, and it seems to be helping. Can't be sure since The Headache is still roaring along. If its psychosomatic relief that's OK because I'll take any relief I can get! If its actual relief, I am grateful.

My brothers did the weekly grocery shopping for me today. I didn't even have to ask, they volunteered. I have not been able to do much except take a shower and get dressed, and work with my computer a bit. It was very sweet of them to offer, and was a bright point in my day. They even brought the groceries in and put them up. What troopers!

I have had some really weird dreams today. Most of them were about being cold and trying to find the perfect coat or blanket to get warm. My body does the weirdest thing when the pain starts getting bad - my body temperature drops, sometimes to the point I am shivering. I wonder if anyone else has this problem? Sometimes my blood pressure will drop at the same time instead of increasing with the pain. Weird, eh? I got so cold in Cleveland waiting for my plane I bought two t-shirts and a shawl to put on as layers over my clothes and I still was cold.

The hypothalamus which is part of the mechanism of hemicrania continua, as it is in cluster headaches, controls body temperature, blood pressure, and shivering. I think that the hypothalamus involvement must increase as the pain increases, and somehow is dropping my body temperature and inducing shivering. The same area that controls shivering also controls memory, so maybe that's why I can't seem to remember things when The Headache gets bad.

Hoping for a better tommorrow! I have been wishing that the stimulator will keep me from being disabled by The Headache. I guess I should just be grateful if I get some pain relief, even if I still have significant disablity.

After Headache Day #13 2009 Home Again!

Recovering from the Extreme Cold

Back home after making the trip to the Cleveland Clinic. One day to drive up (with a bad snow storm for the last hour of the drive) one day for medical appointments, one day to drive back. The weather was very very cold - on Thursday I woke up to zero temperature with a -20 windchill. It's been about 20 years since I was out in weather that cold.

Thank heaven for small favors - Wednesday, the day I drove up was a great day. Clear skys and clear roads almost all the way to Cleveland AND The Headache was behaving itself. The Belly was in rebellion so I resolved to not eat much for the next few days to see if that will help.

Thursday went to the clinic, and was seen by the pain management team. After I spiel off all the things that are wrong with me I feel guilty because two different people - a nurse and a doctor - have to type up notes with all that in there. Type Type Type. Sigh - and especially when I have to say pancreatic billiary sphincterotomy - no not sphincterectomy that's a different operation - sphincteroooootomy . Poor folks - and of course the question is always asked - are you depressed, and I say "No, but after that list I just gave you of what's wrong I'm starting to think I should be!"

The doctor I had the appointment with came and put pressure on what I am guessing are my occipital nerves. On the left side, it was quite painful and zinged up the middle of my head and around by my left ear. On the right side it didn't really hurt at all. I was told after further description of my headaches that I was a good candidate for an occipital nerve stimulator implant. Yeah!!!

I was then told that this use for the stimulator is still felt to be investigational so my insurance probably won't pay for it, BUT I might be eligiable for a study that would pay for it if my insurance wouldn't. The study coordinator came in and questioned me closely and I ended up signing up. I won't know if I am eligiable for a least a couple of weeks.

The headache disorder I have (hemicrania continua) should disqualify me from the study, but the doctor who saw me assured the coordinator that I would qualify. Not sure if that meant my diagnosis is wrong, or that I am in such bad shape they had pity on me! I had to take a psychological test and interview first before anything else could proceed. The doctor that did that was kind enough to work me in after 5:00 that afternoon so I could head home the next day. I should know in a couple of weeks what the study committee decides - am I a keeper or a tosser?

The Headache decided that day that all the walking I was doing was going to rile it up. Physical activity is a trigger for me - the more I walk or sweep or shop or drive the worse it gets. Because The Headache had started its march that morning when I parked the car in the very large parking garage of course on the wrong side of the clinic complex. I was able to traverse the four blocks to the building I needed to be at indoors except for the last block. That was a windy block indeed! Same going back.

I paid my parking fee of $10.00, then went to look for my car in the parking garage. I couldn't find it! There were a lot of cars that looked like it, and as I walked in the cold cold garage The Headache got steadily worse making it harder for me to recognize the durn thing. I finally went to the top story (7th floor) and walked it down towards the bottom, checking for my car on every level. I found it on the second to bottom level where I had walked by it four times before. THEN by the time I got in the thing I realized that I had lost the paid parking voucher. To get out of the garage I had to pay the $10.00 dollars again.

I made my way back (15 miles) to the hotel, and then after getting an appointment for the psychology test drove 20 miles out to that clinic. The Headache was getting steadily worse. On my way back from that appointment in the dark I went the wrong way and ended up 40 miles further out of town. I finally figured out I was going the wrong way, so I turned around and drove back 60 miles to my hotel - making that a 120 mile round trip. I was able to take benedryl/phenergan to knock The Headache back a notch or two and go to sleep. I should never drive when The Headache is gaining control but there I was gadding about some distant suburb of Cleveland thinking I should have been downtown by then! I was very disoriented but it all turned out OK.

Augie and Wilsy were quite happy to see me come home. Augie had to run run run to show how glad he was to see me. Wilsy of course is just sitting around griping at me in her old kitty voice. It's good to be home!