On Fire

Neuropathic Pain
 Have tried to rest and recover the last few days.  The pelvic and leg pain has been fairly bad.  I have been cutting up my dilaudid pills into smaller and smaller sections to see the minimum I can take with the least amount of side effects and will take the pain down to barely tolerable.  I had to give up and take it more often today (I figure the dose I am taking each time to be about 0.5 mg) as the pills have not been keeping up with the pain adequately. The lower dose of neurontin just does not seem to be doing much for the pain at all.  My lower legs feel like they are on fire this evening.

I am still having to use inhalers for my breathing problems.  I have trouble breathing if I walk too fast or go outside even in the warm spell we have had the last couple of days.   Still feeling short of breath, but will wait until Wednesday or Thursday to see if I need to go back to the doctor.  Hoping to get to work bright and early tomorrow morning.  I am soooo ready to get out and do something!

Hoping that the hives the dilaudid gives me won't get worse.  I am taking benedryl with the small doses I have been taking (I called the doctor's office first to make sure it was OK) but the itching and hiving continues.

I am having trouble sitting still which I know is from uncontrolled pain and compounded by the benedryl and the itching and the hiving.  Instead of shake rattle and roll it is fidget itch and hive.  Sigh.  Wished I looked so mellow and fine like in the song. 

My PCP and Injectable Phenergan

A New Puppy and A New Plan

Saw my PCP Thursday morning.  I had only slept about 30 minutes that night and was very nauseous.  I hadn't eaten a meal in at least four days, mostly intake of fluids had kept me going.  I had probably only had a few hours sleep for most of the week.  He agreed that I had probably passed a kidney stone, and that I was now somewhat dehydrated.  My digestive issues, now exacerbated by the neurontin, are part of the problem with managing dehydration.  The more fluids I drink, the more fluid is put out by my bowels - bypassing the kidneys - and the faster I dehydrate.  IV fluids will actually stay in my tissue longer than drinking fluids, even the ones like Gatorade that contain salts and electrolytes.

He ordered 25 mg of IM (intramuscular) phenergan to help manage the nausea because I was at the point I couldn't keep anything down, and I have issues with suppositories becuase of the radiation damage. Sigh.  I also expressed my concern at my next trip to Michigan in a couple of weeks.  Bless his heart, he put a standing order for IM phenergan at his office so all I have to do is call and go get a shot.  He also got me two vials of phenergan and the filter needles, needles and syringes to use before my flights.  His nurse, who is a sweetheart, told me the proper way to break off the top of the glass vials, and where to inject.  Now as long as it doesn't delay me too much with the TSA agents...sigh again!

I also finally have decided to face reality and asked for the paperwork for handicapped license plates.  The airport I will have to go to has a parking lot that is ALL uphill, and I just couldn't bear dragging luggage across it again.  My PCP marked my application as "permanently disabled".  Not sure why, but I was expecting him just to do it for a temporary basis, as in "180 days". 

I have a new member of my family, a little chihuahua mix puppy named Emmett or Emmitt - have trouble reading the handwriting on his paperwork, so not sure of the spelling - I'm sure he doesn't care! 

Recently in my area an animal shelter burned.  This shelter accepted about 50% of the animals from the local humane society.  The animals at the humane society had to be reapportioned through all the other shelters, plus a new state law had dog breeders dumping excess puppies and older breeding stock to shelters so everyone was a bit overcrowded.  I decided to look for a small dog that would fit in with my dachshund.  A lady I know from a discussion group and facebook has rescued several chihuahuas that were sooo cute! There seemed to be a lot of chihuahuas at the local shelters so I found one that fits with my family and with me.  He is supposed to be yorkie and chihuahua mixed but he looks all chihuahua to me!

I know from experience that I will focus less on myself and my misfortunes if I have a "project" to focus on instead.  Although Emmett is only two months old and weighs a tiny bit over a pound, getting him potty trained and obedience trained will be something I can work on outside of my problems.  He is very calm and well socialized and seems to be very sweet natured and my mother loves him.  Augie my dachshund has already offered him one of his treats which is a great sacrifice for Augie!

The neurontin side effects seem to have stabilized by now (day 10) to be mainly digestive with some dizziness.  I don't think now they are going to morph into any different side effects as Dr. Kildare and my PCP both say I won't be able to tolerate a higher dose.  Rats!  The pain relief  is far from complete and my PCP wants me to start taking Dilaudid with the neurontin at night.  I haven't yet, but may tomorrow night if the pain does not get better tonight.

I called Dr. House's office (the neuromuscular specialist) to make sure Dr. Kildare's staff had sent the medical records to them, and to verify that they accepted my insurance.  Pluses on both counts, but the negative is they have not made an appointment for me, and they are currently booking appointments in the March to April range.  Big Sigh...

Emmett is squeaking, his way of protesting - not much of a barker, mostly a squeaky boy.  A little bit whiney - just like me!  I guess I'll go tend to his puppy needs (which mostly seem to be hold me, cuddle me, pet me) and rock him to sleep.  Kidney stone #2 is on the move - I may try some parsley tea a reader suggested to see if I can get it to move along!!!

Bad Day Bad Back

Bad Business

I think I'm going to have to hang up my traveling shoes pemanently.  The Legs gave out on me the other day, not wanting to walk.  Last night and today I am incapacitated by pain.

Pelvic pain and The Legs are giving me fits. Last night I took dilaudid with Soma trying to get past the pain and sleep.  This morning the pain was just as bad, so I took a partial tablet of dilaudid along with Soma.  I got to the client hoping I could just work past the pain and do what was necessary. 

The pain just kept getting worse and getting worse until by 10 am I could barely stand to stand.  By 11 am I was trying to stay sitting still and the pain just kept coming, with additional fun side effects of muscle cramping in the bottoms of my burning feet and sudden surges of pain that doubled me over.  By noon I told my boss and coworkers I had to go back to the motel room.  I had no choice but to try to rest and recuperate in order to go again tomorrow.  Not quite sure how I am going to get through the next week.

I took more pain medication and slept most of the afternoon and this evening.  Now The Headache is all riled up because I took pain medication.  I am finding it very difficult to stand, walk, or sit.  I am sick to my stomach partly because of the pain, partly because of the pain medication.   I am itching everywhere because of the pain medication and The Hives. Hoping tomorrow will be better.

I am disappointed that The Legs are not behaving.  I am discouraged that the pain won't stop.  I am worried that I am falling down on my mission for my client and my employer.  I am mad that my health is interfering with what I want to do and what I need to do.   I'm not sure what to do if this doesn't improve tomorrow. This stinks. Big Time.

The Head Doth Hurt

Me Without My Stimulator

A total unretouched unedited picture of me today.  The Headache rules. No electricity now for 24 hours.  My bosses, as always, were so nice when I called in sick today.  One even volunteered to drive me where ever I needed to go to pickup the new stimulator controller. 

Almost made me cry - well actually it did - but I'm very low at the moment.  I know its only temporary, but somehow it is like a flashback to a nightmare which was my two years prior to getting the stimulator installed.  It doesn't take much right now to tip me over the edge of tolerance.

Tonight I look like Hell.  In addition to the swelling of my left eye due to The Headache, the dilaudid I took is making The Hives more active and my entire face is swelling.  The indent around my right eye is where my face is swollen and touching my glasses.  Sorta like Mr. Peanut and his monicle!  And he carries a cane too - so maybe I'm am slowly metamorphosising [is that even a real word??] into Ms. Peanut!  Ewww - now I'm thinking Kafka and the book Metmorphosis!  Head - stop it!

The A-Team had no suggestions for pain, other than just keep medicating with dilaudid.  I'm leery to take more than one pill a day because I rebound so bad from it, but they said to take it every so many hours.  I'm thinking maybe tomorrow I will try and get an IV of solumedrol at the emergency room.  Depends on how bad it gets, but I don't think the dilaudid is going to cut it.  It reduces the pain a little bit and keeps it from going past my tolerance levels but with the puffiness going on even with antihistimines I am afraid to take a lot of it. 

My stimulator controller should be in by Fed Ex Monday, and the A-Team had no problem with me going there to get adjusted.   Yeah A-Team!  Dr. Hannibal Smith had actually done some research for St. Jude, so it was a happy coincidence for me. 

Monday can't come quick enough!  It's going to be a bad night tonight, and a very bad weekend too.  I'm definitely in Woe is Me land.  Note to self:  Suck it up, you can handle it!  Tomorrow is another day, and there is always Tara.

Hurling Contest

Revenge of The Headache

Thursday night, The Headache tried to come to life.  I suffered through Friday with brain fog, but the stimulator kept most of the pain away.  Friday night the pain got worse as did the nausea, so I took 2mg of dilaudid at about midnight along with phenergan.  This got me through Friday night.  Saturday was marathon flying day, so The Headache decided to be extra pesky.  I took 2mg of dilaudid and phenergan, yet the pain and nausea kept increasing - I didn't have time to sit and rest and ice down my head  - so the vomiting commenced. 

I have vomited a lot of places over the years, because that has always been a part of bad headaches for me - projectile Linda Blair in the Exorcist type hurling.  I sorta expect my head to spin around too as the pain gets worse as I hurl and after I hurl.  I know I am in a bad way when I erupt in public toilets.  Putting your face downward towards the bowl that has held the excrement from thousands of butts is not my idea of a good time.  Thinking about it is about enough to make me vomit again!  I threw up twice before I got on my first flight, then I threw up in the airflight barf bag, THEN I threw up in the airplane bathroom/toilet.  Oh. My. God.  The odor of that thing.  My sense of smell is terribly heightened when The Headache is active, and I felt like I couldn't even breathe in that little stinky closet of a bathroom.  The plane was still climbing and banking so I had to brace my self so I didn't just blast vomit from one side of the thing to the other.  The flight attendant brought me a cold cloth from the ice chest and I just sat in my seat leaning over my lap wishing I was home already.  I was able to sleep through most of the flight which was a blessing.

I ate a little bit at an airport restaurant in Denver with my co-workers, but the noise and the odors were too much for me, and I skedaddled before they were finished.  I was able to keep my food down but had a minimum of fluids since The Headache really doesn't like a sloshy belly.  I slept most of the way home on the second flight, drove home, and slept for hours.  Yesterday I woke up and The Headache was still there - building up in the background.

I changed my stimulator settings, I drank caffeine, I iced my head, I used heat packs, I took benedryl, vistaryl, and phenergan.  Nothing worked, and the pain kept building.  At 1 am  this morning I took 4 mg of dilaudid and some phenergan.  It was that or call an ambulance.  I managed to keep the meds down, but have been up all night in pain.  The dilaudid did decrease the pain levels from a 9+ to an 8, but the pain is climbing again.  Not sure what I am going to do - I need to be at work, but I am afraid to drive and get caught with The Headache at full blown fury.  I don't think the travel agreed with It, and It is making me pay!

I'm gonna take a hot bath to see if I can get The Headache to calm down so I can go to work, even if I'm late getting there.  A rainstorm went through Saturday night which I am sure aggravated The Headache also.  I did practice my biofeedback skills last night as I fought the nausea and the itchiness from the dilaudid and The Headache pain  and nausea at the same time.  At least I got through the night without having to call an ambulance - that's an expensive headache when that happens. 

Attaching a picture of the lobby of a neat old hotel we ate at while I was away for work - it was quite unexpectedly elegant with Tiffany stained glass skylights and windows, marble colums and gilt decoration. You do get to see neat things when you travel, but I don't think my body is capapble of keeping itself workable on the road anymore.

Ice Cube Meals

Trying To Stay Hydrated

Went to my PCP yesterday, have another appointment with him Monday.  My feeling ill has him thinking that maybe I should go back inpatient to keep dehydration at bay.  He told me to just concentrate on keeping fluids down right now, to heck with real food for the time being.  I definitely don't want to go back inpatient as I just don't have the time to be there.  Too many things to do for work!

He asked how my pain was doing, and I told him I had quit taking the oxycontin because all it did was kill the background pain (which is considerable) and the BIG PAIN The Belly causes wasn't effected at all by it.  I couldn't tell if the confusion was from being sick or from the medication, and since it only worked about half as good as it should, I quit taking it.  Since the confusion stuck with me, I guessed it was from being sick.

He now has me taking dilaudid instead, which is killing the pain.  I cannot take it at the frequency he prescribed or I would be knocked out, but just one pill a day is helping the pain tremendously.  I am trying to work from home (got the VPN connected today - they had made changes unbeknownst to me) as best I can.  I am resisting taking the medication until I can't take The Belly pain anymore, and then I'm taking it and after that I am trying to go through a big glass of ice chips.  Other liquids right now are coming back up.  The ice chips seem to tell The Belly it has had something to eat, and numbs it at the same time.  This is still an iffy proposition since not all of it is staying down, but I am looking much better today than yesterday.

Since I am trying to keep the fluids in me, I haven't hardly even been eating my saltines - these last few days have been really yucky.  I'm bumming.  On the up side I am losing weight!  But my face feels puffy - weird - maybe it's the dilaudid.  And if I am rambling on in my posts its probably because of the dilaudid.  I don't feel over drugged (probably because the pain is soaking the dilaudid up) but I am still feeling very confused. My thoughts are disorganized, and generally that is the only tidy thing about me.  In fact I'm think I'm just going to blame everything for the next few days on the dilaudid.  I need a good scapegoat!

I cancelled my appointment with the A-Team this week, as I am just too sick to make the drive there, and rescheduled for next month.  My PCP told me to not to worry about the physical therapy for a while until The Belly calms down.  My study coordinator Lilly at the Cleveland Clinic called and I won't have to go back to Cleveland for my final visit.  Yeah!!!  She is so nice I will miss getting to talk to her now and then.  I am to do a phone interview tomorrow for the end of the study and will mail the headache diary back to her.

My niece Shelly is having major back surgery tomorrow.  This will be her second back surgery - she has some sort of hereditary degenerative disk disorder.  Tomorrow they will put in three artificial disks in her back, which should relieve some of her pain, so I am praying for a great surgery, and a quick recovery.  She lives in a third story walkup apartment with her husband and pets, and it worries me how she will get back to her home.  She said she will get an ambulance to take her home if she could not do the steps.  I hope she does.  Her husband will take good care of her I know, but sometimes you just want to see that someone you love is OK.  My sister, her mom, is more nervous than Shelly about the surgery. I am sending calm vibes her way!

Going to sleep soon, my parakeets are softly ringing their bells in their covered cage - their way of saying time to go to bed!  Hope you all have a pleasant tomorrow, if not - blame it on my dialudid!

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.

Bad Headache Days 14 & 15 2009

Yesterday's Gone, Tonight The Wind Blows

I don't remember much about yesterday. The Headache started in the middle of the night and after calling in the AM couldn't get into my regular doc. I let the hours tick by waiting for a callback to see if they could work me in, until it was too late and I had to head to the ER.

I went to the closest one, and sure enough there are no patients there until after I show up. Some poor lady who had had two strokes and now had pnuemonia, and an old guy from a car accident come cruising in. Instead of just getting a shot and getting out of there, I wait and wait and wait in an ER enclosure for them to give me the $@#% toradol injection and get out.

Well, the wait was too long so they give me the toradol and it doesn't do anything, they then add phenergan and something called NuBain to it. Well, the NuBain makes me woozier than heck, and knocks all knowledge of pain out of my body EXCEPT for my head! The Headache just gets worse because time has marched on again. My BP lowers, but not very much. Then they say well, we will try some dilaudid....My BP lowers again, but not very much, but the dilaudid did take my headache back a few notches. Success!

I wooze my way out of the ER, vomit all the way home (my poor brother again driving) and wooze my way to the couch. I sleep off and on, getting up only to have the dry heaves. By late evening I am sure I can hold some liquids and some crackers, but no go - to the bathroom I wooze again to toss it up. At about 2:00 AM I was able to hold some water down and my medication, and sleep. I don't think I will be adding NuBain to my list of successful medications. The Belly didn't like it, and it didn't help The Headache at all.

Today, rain and wind and tornados to the west of us has made this a gloomy day and gloomier night. I have slept through most of it, but The Headache is on ice this evening. I feel worn out and tired, and The Headache is trying to make the most of it! The Belly still is not feeling well, but I have drank some lemonade today and kept it down so I'm good.

The wind is whistling around the house and down the chimney and drippy icky rain is coming down in sheets. Tornado watch until midnight, but the local forecasters say the danger will be there until 2:00 AM. I will go to bed soon since the tornado watch is over although the rain and thunder continue. I hope to go to work tomorrow and hope for a better day!