Dreamtime in Missouri

Productive Sleep

I have started dreaming again.  I had not realized I was not dreaming until I started again.  I am sure I stopped because I did not have enough thyroid hormone.  Dreaming is one way I know I am getting restful sleep (when I actually sleep).  With hypothyroidism you may sleep for hours, yet wake and not feel rested.  T4 replacement therapy fixes this somehow.  With The Headache and hypothyroidism, I get to sleep for a couple of hours, and not feel rested.  Sigh.

I remember how tired I was when I was first diagnosed with thyroid deficiency.  I knew the thyroid medication was working because I started dreaming again. It had been a long long time since I had had a dream I remembered.  I also woke up from sleep feeling refreshed, like I had been breathing buckets of cold fresh mountain air after thyroid hormone replacement.  Restful, wonderful sleep!  I love it!  I miss it!!!

The dream I had last night stuck with me.  I was driving in the mountains in the dark next to a river that was mirroring the mountain road - going up and down hills.  I could hear the rushing water in the darkness and saw the dark blue gleam of the moon off the current.  I parked my vehicle in a warm yellow cave where the river ended, and next I knew I was flying along a road that was surrounded by tall buildings and waterfalls.  So many waterfalls - everywhere I looked there were beautiful clear blue waterfalls.  Somehow I knew the river fed the city of waterfalls.  Like the river, the sound of the waterfalls filled the air, and the water hugged hills and valleys in a way that defied gravity.  Near one glass towering building a pyramid of waterfalls was topped by a hovering revolving orb of water.  The road kept going on and on and on and the waterfalls sparkled and fizzed and burbled with new structures and new waterfalls every so many blocks. As I flew from the darkness into sunlight sparkling off dancing waters I woke up happy and relaxed.  Ahhhhh.

I started taking cyclosporine today.  I am to stay at my initial low dose for a couple of weeks, but may have to increase the dosage.    Dr. Calm gave me a prescription for it last Thursday. My face has been swollen the last couple of days from mild angioedema, hoping this will fix my fat lippitis.  I used ice last week to bring the swelling down before going to work, but that then starts issues with my facial pain from The Headache.  Wish I could disconnect an illness and put it on a back burner or maybe cure one disease before I start working on the next one.

Dreaming of Opalescent Windows

Sleeping the Day Away

Very tired, am just posting before I go to bed - have just been up a few hours.  I slept last night and all day today until night had fallen.  I vaguely remember my sister coming over and people talking, but mostly I was dreaming about a house with opalescent windows.

The windows were in a semi round room full of furniture due to go to auction (I think I got the scene from a recent Antiques Roadshow episode).  They were around the wall on the curved portion floor to ceiling rectangles of milky opal light. You could almost reach out and grab the light as it sparkled by. It was a peaceful room and I guess I needed to stay there because I dreamed and dreamed and dreamed about that house and room.  In my dream it was in a small town near where I grew up, but of course the landscape had changed and there were several of these huge houses on the main street and I could not find a familiar house where an old friend grew up.  How in the world do you identify a place specifically in a dream when nothing really looks like the place you specify?

I've graduated up to having a little more food.  Am still not taking any pain medication.  The Belly is reluctant to eat, and The Headache has not been cooperative today.  I don't think it likes over sleeping.  Have turned the head buzzer on high and have taken my faithful antidote of phenergan and benedryl a couple of hours ago, just not sure I will make it to bed soon, although I feel extremely tired.

Read a little more about radiation induced lumbosacral plexopathy (The Legs) and it seems the progression I am having is normal for this type of problem. I have an exacerbation of pain and dysfunction, and after recovery am worse than before the exacerbation.  I am going to talk with my PCP about prognosis - I have tried everything and nothing has really helped the functionality.  The myofascial release and PT excercises have helped my flexibility, just really haven't done anything yet for endurance and pain.  Maybe I'm just too impatient. The problem is very difficult to distinguish from diabetic plexopathy and mutiple sclerosis, except for the bladder scarring/dysfunction and proctalgia which seem to be distinct for radiation damage.

I have felt very under the weather today, hoping tomorrow will be better!  Good night all!  Hoping you all had better weekends than I.

Dreaming of Running

Wild Horses

Dream time again - this time no drugs, no pain killers, more's the pity. Maybe its exhaustion making my imagination run wild?

Horses running through the air, thundering by, leaving trails of fractured light glinting from their heavy hooves. I try to watch them, but they are too fast. I try to follow, but they go where I can't. Wishing I could run with them to parts unknown, but I won't.

I'm not a horse person. I'm too short and trusting, they're too large and crafty. Not sure why the horses during a nap earlier this evening. A metaphore for how I feel about next week I am afraid - wild horses will have to drag me there???

My pain is better this evening, but I am sicker feeling. High lipase levels make me feel this way, but it could just be as simple as another infection. Not sure what to do.

I should go to the doctor tomorrow, but if I do that something else work related will have to slide, and I don't have the time for that. I was hoping to catch a ride to the client's with someone else from work tomorow evening because I don't want to drive the two hours feeling like I do, but if I do anything other than go to work it won't be possible. If I wait too long to see the doctor, I could end up back in the hospital. Maybe the horses in my dream were ready to draw and quarter me ala Genghis Khan style.....story of my life: darned if I do, and darned if I don't. Nothing is simple.

I was so happy I had some vestige of control over the pain, and now that is gone. Maybe my hope was what was running by in the dream, not horses. I guess it was for the best, I think the hydrocodone was making The Headache a little worse besides giving me hives. Maybe the doctor will have some magic pill up his sleeve that will save the day, but my brain is telling me probably not so.

I've been trying to eat beets because I read on an online support group for persons with Sphincter of Oddi and pancreas problems that beets could be beneficial. However, they seem to be going through me without digesting, just like the rest of my food, so not sure if I am gaining any benefit from eating these. Guess I should be glad I don't mind eating cooked beets or pickled beets.

I wanted to work on a project this weekend, and I have done nothing but sit around in pain and feeling sorry for myself. Suck it up Emily - time to get moving! Maybe that was the meaning of my dream?

Rainy Sunday

Blade Runner?

Dreaming of ice skating, skimming on feather thin blades, twisting in the air to alight on tiny tip toe and spinning in the light. Not sure of the meaning of the dream, but part of the imagery was the jagged tips of the skates used to brake and stop. Larger than life, they glimmered in icy silver jackolantern grins of zig zag metal, digging into the soft ice directing my gliding path but failing to halt my frosty dance. Maybe I just need to slow down?? Hard to slow down when you are already just moving at a crawl.

Rainy today and a restful Sunday. Have just slept and sat, doing nothing today. I have not had to medicate The Headache or The Belly today so that bodes well for tomorrow. Going to bed in a few minutes hoping to sleep some more.

Talked with my sister, who has a skunk infestation under her house. If anyone has any ideas on how to get rid of skunks, let me know! We have tried all the tricks we knew of, and my sister is down to either trying to live trap the skunks or kill the skunks. Last winter the lady skunk had wild skunk sex underneath my sister's house and knocked the duct work down and then sprayed because she got scared. Peeyew!! This is the third year this has happened and my sister is pretty sure they are the same skunk family each year. They are nice fat skunks who are used to central heat in the winter!

Ready for a new week. Hoping for a productive week at work and that my electrified head buzzer will keep The Headache at bay.

Strange Dream Playing Goph

I'm All Right?

Had a strange dream yesterday. I dreamed that we were playing Goph. Not Golf, but Goph. Goph was a game like golf, but the balls were made of frozen gophers. We were playing rounds on a beautiful green goph course. It was getting warm, and our frozen gophers (goph balls) were starting to thaw. Someone hit their goph ball too hard, and the gopher became unwound and laid on the ground panting, sorta flattened out.

I am sure there is some hidden meaning here, but I'm not sure what it is. Maybe I'm remembering the Kenny Loggins tune from Caddyshack: "I'm All Right"??

Dreaming of A Forest

Finally Sleep and Dreams

Haven't been sleeping much this week, but I finally was able to sleep last night. As sometimes happens when I get extremely tired, I had a dream about The Headache.

I was in a wet rainy woods, with leaves falling all around me. A woodpecker flew by and settled on my head. I was enchanted by the bird and kept trying to grab it because it was sooo beautiful, but everytime I reached for it, it would flutter up and then land again when I put my hands down. The rain started coming down more quickly and the woodpecker started rat-a-tat-tatting on my head, making water fly. Then I woke up. The Headache was in one of those sharp piercing pain modes, so I think the woodpecker was The Headache.

The Headache is not nearly as bad as it was last year this time. The occipital stimulator seems to be helping (unless that's just a placebo effect), but twice in the last two days I have had moments of extreme white hot piercing pain on my right side of my brain. Left voice mail at my headache specialist, but they have not returned my call - which probably means the specialist and/or the nurse took the week off. Not sure if there is any way to medicate for these swift stabbing pains. At least the pain no longer keeps mounting into the stratosphere when the hot icepicks start piercing my brain. I can bear pain if I know it will end.

Worked more than full time the last few days. Got a lot of work caught up this week, probably will be looking for extra projects in a couple of weeks.

The Headache is slightly worse because of the activity and maybe the wet weather. I am getting back in the mode of travelling for work next week, with a couple of days onsite at a new client, then off to Cleveland on Thursday, and back to Kansas City Thursday evening. I don't know if I will stay in KC Thursday evening or not. I suspect I will because I won't be hitting town until almost midnight. My flight leaves at 5:00 am so it will be a long day for me. I have scheduled Friday off, but may work part of the day if I can.

Because of my schedule I'm not sure if I will be blogging much next week. I'm hoping The Headache will be behaving itself much better, especially if I get full programming from the St. Jude representative instead of just the four programs I have for the study. Not sure what to do if the right side problems keep up - but at least the pain on that side is not continuous.

Fall is my favorite time of the year. I live too far south now to have early frosts, but I remember waking up as a child in the morning when there was an early frost and the crispness of the air and the crunchiness of the grass underfoot. We mainly have oak trees here, but I grew up around mixed hardwood forests where fall meant hundreds of shades of color as the leaves turned.

I must be homesick a little since going up "home" for the family reunion. I miss the closeness of living in a small town. The town I live near now isn't so large either - about 5000 people, but the town I grew up closest to had a population of 25. A world of difference! At the general store (which reminded you of Drucker's store on Green Acres) you could buy original Studebaker parts in Studebaker boxes from when they had a Studebaker dealership. I bought some elastic there in 1978 that the store owner's wife discounted from 10 cents to a nickel because it had been water damaged in 1956 when the roof leaked. The elastic was 3 years older than me!!! They had a checkboard out, and rang up your purchases on a big fancy old NCR cash register - hand cranked and went CHING when the cash drawer opened. They carried Dad's Root Beer in glass gallon jars, and had penny candy of all sorts. We used to tease my father (as soda pop was not often served at our house) saying "Buy us some Dad's dad, how about some pop, Pop??" Ah well, its all closed down now, and has been for many years. I'm feeling my age tonight for sure. Must be because I grew up in Hooterville and not Pixley.

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.

A Good Day Wasted

Do Nuthin' Day

I have done a big lot of nothing today. The Headache appreciates it mightily. I have cut back on the indomethacin yesterday and today to 100 mg per day instead of 200 mg. The Headache still hurts but The Belly is feeling better.

I did bake a birthday cake for my brother's birthday, but that wasn't a lot of effort. I am not eating much which is helping The Belly also.

I dreamt last night about sleeping in bathtubs and woke up with my head jammed up against the headboard of my bed. No wonder!!!

Taking Indomethacin Again

Coconut Monkey???!

I was able to go 24 hours without Indomethacin and without The Headache escalating into a tornado of pain. There was a steady dribble of increased pain during this 24 hour period, so if I had waited another day, I might have been in trouble. I started out at a 4 and ended up at about a 7 in a day. The Belly is grateful for the vacation.

I was starting to get the pain jitters - where you just can't keep your arms and legs still. I am getting so used to The Headache, that I have to clue in on other signs to tell if The Headache is trying to attack.

I took 50mg of Indomethacin about 30 minutes ago and can feel the cooling relief where it is destroying the burning ouchiness that is The Headache. I am extremely tired for no real reason. I think The Headache has been hurting more than I want to admit.

I had another weird dream last night. We were living in a coconut jungle with coconut monkeys and had concocted some kind of Rube Goldberg contraption using bamboo, vines and rolling coconuts to wake us up in the morning. The monkeys had constructed it for me, but had shorted us on vine material so some of the bamboo sections weren't dropping in correct sequence. We were trying to "unstring" the thing, and it was becoming a big mess, and the monkeys were very irritated because we were changing their setup. Everything was kind of that dried out brown color of dead vegetation (or mature bamboo) except for the luxurious brown fur of the coconut monkeys and thier shaggy brown coconuts. The dream ended when I was down on the coconut jungle floor surrounded by coconut monkeys conducting a meeting on how to correctly fix the coconut contraption. Not sure what a coconut monkey is but they looked like a cross between a lemur and a chimpanzee, and were quite bright. The coconut jungle was quite dry, not a tropical rainforest at all, but the coconut monkeys felt quite at home.

Indomethacin Free??

Try Try Again!

I tried yesterday to quit the indomethacin. Not a great idea, The Headache came back, but in altered glory, and I ended up taking indomethacin again in the evening. The pain is still different.

It's bizarre. I was dreaming that night of a green glow around the back left side of my head where the pain seems to begin and a grinding noise like sand underfoot. Maybe I just biofedback myself into being better?? I have constant pain, but it is indescribably different. It's like someone picked my head up and put it on my spine in a different manner. Some of the neck and shoulder pain is less also. I think contemplating the stimulator surgery has scared the bejeezus out of my headache. Good, at least something does!

I am going to try again today to go off the indomethacin. It's noon now, and I haven't had any since last night. I'm about at a level 4 or 5 on my personal pain scale but it doesn't have that "scaling up" feeling. I'll see how long I can go without any medication. God is Good and hope is not dead. I'm gonna try to do some housework - physical activity has been a significant trigger for me - hopefully that will be different too!

Bad Headache Day #16 2009

Goldfish out of water

Well, I knew I was risking fate when asking for three good days in a row. Yesterday was not a good day, but thankfully I was able to sleep through most of it with the help of my friends Benedryl and Phenergan. Add another urgent care visit to my year, but this time I got antibiotics too! Apparently, dehydrating myself in order to drive 13 hours to Ohio and 13 hours back to Missouri was not a great idea....but hopefully I will be in tip top shape by Monday.

Under orders to hydrate, hydrate, hydrate I have been drinking cranberry juice all day and water water water. The pancreas enzymes and liver enzymes were up but at least not at the hospitalization level yet. Maybe the antibiotics will help...

The problem with drinking liquids is that I have to medicate for pain and nausea because The Belly right now isn't taking kindly to anything. So yesterday was sleepytown, and today was slooooooow moving. Tomorrow should be better, and hoping again for a good Monday.

My boss at work is so great. Just being able to work 10 hours last week, I was feeling very guilty when I finally woke up Friday afternoon. I hadn't even called in work! He said not to worry, they were holding down the fort. This is the worst part for me, because I really like my job and the people I work with. I've been there six years and that's a year longer than I've kept any job in this area since I moved here 20 years ago. I hope to be here until I retire. That's why I hope I get accepted in the occipital stimulator study. I want to work, and I'm not ready to throw in the towel and say I'm disabled yet.

I had a strange dream yesterday. In the dream my family had rented a cabin in the mountains. We went into town where there was a festival going on and I had forgotten all my ID's and my purse. We went back to the cabin, and our feet were dirty so we looked out the back patio doors and a wide clear stream with gold fish in it was right at bottom of the door. You could see the rocks at the bottom and little gold fish swishing back and forth. I opened the door and I was going to put my toes in to see how cold the water was, when I thought "This is probably deeper than it appears" (I guess thinking the same as the rear view mirrors on my car where objects are closer than they appear) and I woke up. Maybe I think I'm getting in over my head?? Who knows - perhaps I will dream again tonight!