Overwhelmed

Toooooo Tired

Feeling more than a little bit overwhelmed today.  The Belly is not cooperating - probably because of the drive Tuesday to St. Louis and back.  I am exhausted by that little bit of effort - I'm such a weanie.  Pain is through the roof and medication only helps reduce it couple of notches. Dreading tomorrow,or is that today??

Ah well, To Infinity and BEYOND! Can and will move forward! Standing still, while tempting, is not an option and my reverse gear seems to be stripped.

Mast Cell Madness

Another Specialist to See

Saw Dr. Calm today.  I explained the IVP situation with Dr. Pepper and Dr. Calm agreed that I should not have an IVP, that it could be life threatening.  I just had an anaphylactic reaction a few weeks ago over two pieces of cashew, and I have a pretty good crop of hives, so premedication for me is sorta like a drop of water in a desert, doesn't get much done.

Dr. Calm reordered a bunch of tests to check for mastocytosis.  He also ordered a cashew antibody test to see if I am really allergic to cashews or if that was just my body's way to say ENOUGH.  He also is sending me to a dermatologist to be checked for mastocytosis problems of the skin (maybe my big winny fat nose hive?? or the brown and red spots scattered all over my back..).  He asked why I hadn't seen one before and I said it is because there is generally a year wait for a dermatologist in this town.  A gal I work with had recurrent skin cancer and the local dermo's office told her it would be three months before she could see him since she would be a new patient.  I don't know what mojo Dr. Calm worked but I had a call from the dermo's office and have an appointment early Monday morning.  WooHoo!

Dr. Calm thinks I need to get my hiving under control, as that may be why I reacted to the cashews.  So now I am on 50 mg atarax at night (H1 blocker), 10 mg singulair (leukotriene blocker),  2 doses of Zantac per day (H2 blocker), if I can tolerate it 2 doses of Zyrtec per day (H1 blocker) plus take gastrocrom again (mast cell inhibiter).

During the cashew episode I started having a really bad reaction about 20 minutes after I ate two cashews.  I started hiving big time, I felt faint and dizzy (my blood pressure dropping), nauseated, in severe abdominal pain, and then the agioedema started in the throat and the allergic asthma.  I self treated with 50 mg benedryl and 25 mg phenergan.  I should have used the epipens, and Dr. Calm agrees with that assessment.  He says never hesitate to use the epipens, but I cringe because they certainly hurt!!!

Hoping for a productive weekend.  Hope you all are having a good weekend also!

Finally - Dr. House

Crisis Management vs. Healthcare Appointment

Life here at my house has been not only hectic but in a tizzy.  I have not been blogging, and I have been staying close to home mostly because I had to help manage someone else's serious health issues and my Mom needed me close by.   She does not have the coping skills to keep up when events turn sideways quickly. Tonight I have some time to blog because while the crisis is not totally past I know everyone involved is safe and well cared for at this time.

The crisis was an hangover from the prior week, so my week got even better when kidney stone #2 of 2011 decided to pass Tuesday night. I debated about calling an ambulance. The pain (even with the fentanyl patch) was so severe I could not drive, stand or doing anything but squeak icky noises. My Mom was having enough problem coping with the other issues, I just couldn't leave her at home while I went to the ER to get help with KS#2. I rationalized that the ambulance would take 20 minutes to get to my house, the ride would take another 45 minutes, and I wouldn't get any pain relief at the hospital for at least another hour - and by then the stone might have passed. I toughed it out and finally got some liquids down my gullet to help push KS#2 down the path after about five hours of extreme spasms. Not something I would recommend if you didn't have to. Big sigh.

Wednesday I wasn't eating much of anything because of KS#2, but I had a tiny piece of some cashew brittle.  I don't eat cashews very often and never cashew brittle but thought maybe the sugar would pick me up and the protein in the cashew would actually digest.  I started having an anaphylactic reaction - joints swelling, stomach hurting awfully, hives popping out, itching itching ITCHING.  I thought - if I use the Epipen I will have to go to the emergency room, so I took two benedryls and a phenergan instead.  This did drop the swelling and some of the itching and stomach pain but I had forgotten I am wearing a fentanyl patch for pain.  I got a little scared because it did become difficult to breathe.  With anaphylaxis it is hard to tell if the problem with breathing is asthma, anaphylactic reaction, or medication problem.  I used my rescue inhaler but it didn't help much.  I think this was a drug-drug interaction between the benedryl, phenergan and fentanyl.  Too much too quickly.  I guess next time I will use an epipen.  Bigger sigh.


I had my appointment Thursday with Dr. House in St. Louis concerning The Legs and the neuropathic pain and weakness.  I had planned on taking Wednesday to drive up to St. Louis (because I fall asleep so badly when I drive it takes me at least a couple more hours to drive this than normal) spend the night, go to my doctor appointment, toodle around St. Louis some, maybe eat some really good Italian food on The Hill, go to Union Station, shop at the Dillard's outlet store - my usual St. Louis jaunt - spend the night again and drive back home Friday.  With The Problems at home taking precedence I decided to drive up and back on Thursday.  Very Big sigh.

I left at one in the morning.  The normal four and a half hour drive took me almost seven hours.  I had to keep pulling over to take a nap.  Nothing kept me awake.  Lately driving at night has gotten me very disoriented.  I seem to lose directional sense and depth perception.  Just what all the other drivers really needed to have on the road with them.  If I had only had the money I would have gotten airplane tickets to St. Louis, and then taxi'd it to Barnes Jewish for the appointment.  Ah well, I was very cautious driving and as dawn approached my vision difficulties got better.  Sigh yet again.

Fecal incontinence makes traveling a difficult problem.  Normally I won't drink very many fluids for two or three days before traveling, and don't drink very much during travel.  However passing KS#2 became a priority so I was primed full of fluids.  I took extra clothing with me, and was very glad because mid way I had an accident.  Since my external sphincter is not as functional as it should be, I just don't have pucker power.  As I explained to my colorectal specialist once the poop chute is loaded the payload delivers regardless.  I changed clothes twice before my appointment.  I was so glad I had brought the extras!!!

My appointment with Dr. House was at 9:30 am, but I got there early and was seen much earlier.  I had been to the Center for Advanced Medicine for Washington University Medical School, and Barnes Jewish Hospital before.  I saw Dr. Bellyfixer about the digestive issues I had from the radiation therapy overexposure in 2004.  He was quite helpful, and I found Dr. House and his team just as thorough and helpful.  Wash U definitely Rocks!!!

A young neurologist took my history and did a physical exam.  He did notice my permanent hive on my nose - I told him it was my Rudolph the Red Nosed Reindeer spot.  I guess it helps that I had gotten some sun, because that makes it shine more perfectly beautiful.  I warned him I already had several rare diseases, and if I got one more rare disease I might not believe it. Ha!!  I was so tired I am not sure if I made very good sense.  Good lord I had to remember who was president and do math and spell things backwards!  This is a woman who just pooped her pants twice in the last 7 hours.  I don't know if I was competent to do anything that required brain power...  When he got out the large safety pin to poke me with, I almost pooped my pants again.  Ouch! 

I had brought copies of xrays/mri's/ct scans that Young Dr. Kildare had said Dr. House would need.  Nope - didn't need any of them because I don't have a physical issue with my spine or hips.  I brought copies of Dr. Kildare's notes, nope they didn't need any of them.  They were glad that I had brought the immunology labs and some DNA testing I had done (I thought of that on my very own - take THAT Dr. Kildare!!!).  Dr. House and the young neurologist consulted with each other out in the hallway, then Dr. House came in and introduced himself.  Very nice, not like the TV Dr. House at all.  No arrogance, no immediate attempt to blame me for my problems.

Dr. House repeated part of the physical neurological exam.  Thank heavens - no current event quiz, spelling bee or math problems.  I was halfway expecting him to make them more difficult - there is a train traveling east at 40 mph etc. etc. etc.  Whew!!!  We discussed why Dr. Kildare had sent me there, and his conclusion that I had small fiber neuropathy.  We also discussed my problems with my bowels, bladder, pelvic pain, and nerve pain and that I associate the onset with my vaginal brachytherapy treatments in 2004.  Dr. House said he was going to repeat the EMG and nerve conduction tests using their techniques before he decided I had small fiber neuropathy.  If the tests were negative, then I might need to have a nerve biopsy.  He said their techniques were generally more sensitive than the ones I had in Springfield by Dr. Welby.

I got my blood test orders and the nerve test orders and was sent directly to the EMG lab.  The lady doing most of the test took her time and did much more extensive testing and also warmed up my foot saying if it was cold it could distort the test.  A doctor came in after she was done and read the results of her tests.  It showed a very subtle difference between the speed of the nerves in my arms verses the speed of the nerves in my legs. He said that he would probably say I had large fiber neuropathy, but did the needle part of the test which was normal first.  He went to discuss his findings with Dr. House.

The lab got me admitted to their services and I gave about a gallon of blood for some tests for other causes of neuropathy.  Not sure what they were but Dr. House said it would take a couple of weeks to get the results back so they may have to ship some of it off.

I went back to Dr. House's office to see if I needed a nerve biopsy.  He said that they had all concluded that I had large fiber neuropathy (which Dr. Welby had not detected).  I asked the cause and he did not say that it was diabetes, but he did say he just couldn't prove it was the radiation.  I asked him about the weakness and the pain increasing with activity and he said that was normal with this type of neuropathy.  I asked about physical therapy, would it benefit me, and he said probably not.  I asked about medication and he said I was getting what he would have recommended, but that I might double the fentanyl for more adequate pain relief.  He said I should call back in a couple of weeks if I didn't hear from them about the blood tests.  He said I might have small fiber neuropathy also but the majority of The Leg issues are from the large fiber neuropathy.  Huge sigh.

I got out at about noon, which is fantastic with everything that I did, and started home.  I got home about 6 PM and ended up going to a hospital and leaving there at about midnight because of The Problem.  By the time I got home I was so exhausted I was falling asleep standing up.  I slept very late Friday, and a lot of the day today.  Right now I am so tired I am falling asleep writing this - you probably can tell!!!  Triple huge sigh.

I go back to see Dr. House in six months.  I see Dr. Kildare in a couple of months.  I know that I have large fiber neuropathy, which is more consistent with radiation induced plexopathy but can also be from a lot of different things as it is the most common kind of neuropathy.  I also know that I do not feel cold the same in both of my feet.  One does not feel cold the same as the other.  Hoping the warm foot can teach the rest of my body how to feel warm instead of cold!!  I know there is not a lot that can be done other than what I am already doing for the pain.  Maybe a reason for the problem will come up when the blood test results are in.

The Headache behaved pretty well for all the activity.  The Legs and the pelvic pain and KS#2, not so well.  My mind is the same jumble it was before The Problem hit, and all the travel, and all the walking.  Hoping getting more rest tomorrow will help.  If this post is a little goofy, that is because I am majorly goofy tonight.  Gonna try to get some sleep.  Biggest Sigh Ever!!!

Older

Ready To Trade in My Legs

My birthday was this week.  I am older, but am not getting any wiser.  I keep getting myself into the same painful spots I have already been in.  Short of quitting walking, quitting working, and quitting driving I don't know how to stop overdoing it.  Oh well....

Took my Mom to the vascular surgeon  yesterday.  Great news, her abdmonial aortic aneurysm is not at a danger point yet, and per the vascular surgeon she will need to come in every year for an ultrasound and a checkup.  He said as slowly as it is growing, she may never need surgery.  He said for aneuryisms less than 5 cm wide (hers is 4.5 cm wide) watchful waiting is the only treatment.  My mother who had been building castles of disaster in the air (a lifelong habit) was very relieved, as I was, to hear this.  WooHoo!!!  Her aneuryism is right where the abdominal aorta turns into the left and right arteries that go down the legs, so it was lower than I thought it was.

I have had a lot of pain today, but I soldiered on and got Mom to where she needed to go.  Hoping April is going to be the month this all turns around and everything is better.  The fatigue is very bad, and driving is very hard to do without pulling over every so many miles and napping.  I feel it will be a very long drive to St. Louis next week.  Sigh....

I am going to try to work tomorrow.  I have lots to do and not much time to do it in.  Arriving at work is going to depend on how much I aggravated The Legs taking Mom to the doctor.  Hoping I recover while I sleep!

Way Too Tired

Wacky Legs Don't Work Right

Very tired today.  I took my Mom to see her gallbladder surgeon to be released from her post surgery restrictions and for him to visualize her incisions and say they are healing fine (they were).  This only took five minutes.  We were scheduled in the morning.  I thought we will go get this done, come home, and I will whip into work.  Uh uh...was not in the cards today.

We got there ahead of time and waited and waited and waited and waited.  I was so tired I fell asleep in the waiting room.  Finally we got called back into an exam room.  Then we waited and waited and waited for the five minute exam.  The surgeon must have had emergency surgery or something that morning because he was running WAY late.  If they had just told us, go out get a snack, come back around one and he'll see you then I would not have been so aggravated, but since I was so sleepy aggravated took way too much energy.  We got out of exam room limbo around one thirty in the afternoon.  Augh!!!

Then I took Mom shopping for a bath chair.  I had been having a hard time getting Mom to take showers lately.  She has had several small strokes, and has COPD, and apparently has been having panic attacks in the shower and not telling me.  I happened to be making her bed while she took a shower last night and heard her crying and hyperventilating in the shower.  I went in and put a chair in the shower for her to sit in because she was shaking so much and helped her finish washing her hair, etc., and got her dried off with a towel.  She kept saying she couldn't breathe, but she was hyperventilating because she was panicking.  I sat and had a long long talk with her about how she needed to let me know if she was frightened by things like showers or the dark or doctors. 

She had not realized she was having anxiety attacks - she thought the shower was exhausting her and taking her breath away.  I told her that we would get a bath chair with a back and instead of having showers in a claustrophobically small corner shower, she could sit in the bathtub in the other bathroom and use the hand held shower.   I told her I would schedule which days we would do this, and I would blow dry her hair for her if she was too tired to do her hair afterwards.  I told her any steam would dissipate out in the bathroom not like in an enclosed shower stall.  Hoping this will help with the panic.

I drove Mom to the doctor, I walked into the clinic and back with her, and we strolled around Walgreens and CVS pharmacy before finding the ideal bath chair.  Then we drove home.  It was four o-clock in the afternoon by the time I got home.  No work today. Big Sigh.  Mom did like the candy aisle at Walgreens so now we have a big assortment of her favorite candies.  She is such a little lady she could eat candy all day with her regular meals and the extra calories could only help!

I am finding even my cane BLING is not helping on walking expeditions. I spent my evening on the couch in extreme pain in the pelvic area, lower back, and legs. My feet started cramping and then my legs. I ate some oranges thinking maybe I am low on potassium, but it didn't seem to help the muscle cramps, so I am guessing it's not low potassium. Sigh

I need to build some endurance so I drive to work with less pain. The increased dosage of fentanyl (25 mcg/hr) is helping with the constant pain and some of the break through pain, but it does nothing for the type of pain I had this evening (and am still having).  Maybe Dr. House will figure it out in April??  I can only hope.

Its 2 am and the pain is still bad in The Legs.  The Headache decided to try to wake up this evening also - probably due to increased walking also.  I hope Mom is not too tired or in too much pain.  She took a nap and then got up for a while and went back to bed at her usual time of 9:00.   I hope to get to work tomorrow, I have things that need fixing and people to help!   Just need to get my jump jiving legs to be still and quit hurting and wailing!!!

I am going to try to pace myself per Diana Lee's post at Somebody Heal Me "Pacing: Just Three Things".  She suggests just picking three tasks you know you can complete each day so you don't end up over tired or overwhelmed.  I think I need to draw up a list of tasks by fatigue level so it will be easier to pick!!!

PS sorry for the advertisement from YouTube if it pops up - its the official video of The Brian Setzer Orchestra perfoming Jump Jive an' Wail and I guess they need the extra income from the ads???

Fighting The Inevitable

Time to Throw In The Towel?

In boxing, throwing in the towel means you give up, you've been whupped, you are not able to continue, you concede the fight.  I feel I am almost at that point. I get to this place just to revive myself and fight onward for another round or two.

I am so fatigued right now I fall asleep sitting up and it is scary to drive.  I am in enough pain from so many sources that I am almost willing to give up what little coherent thought I have left for adequate pain relief.  I can't digest food.  My incontinence issues are not improving. My ability to walk continues it's worsening path.  I want to quit trying to keep my forward momentum going.

This is probably just late night pain talking. I had a reality check today that started me down this path again.  The roads are still ice and snow covered around here.  I decided to go to work this morning waiting until noon so the roads would be at their optimal cleared levels for the day.  I only made it 15 miles, and then exited the interstate and headed back home.  I used to love driving, no matter the conditions.  Today the pain levels from driving were too much and my concentration and reflexes were too poor for the road conditions.  I feel like a dunce, a failure, a wuss. 

Where is the old Winny who would let neither rain nor snow nor dark of night stay her from her appointed work hours?  My poor health has drained my energy, stamina and strength for the last seven years.  I think it has drained my determination too.  Tonight I am debating what I should do.  I have been trying to delay any drastic decisions until I see Dr. House in April.  I just am not sure if I should wait.  I wonder if it is fair to my employer and my fellow co-workers and my company's clients, if it is fair to myself, to keep trying.  I love my job, I love my work but I don't even have the brain power to think right now to be effective.

I'm going to have to give myself an old fashioned pep talk.  I think I need Burgess Meredith from Rocky to tell me to "eat lightning and crap thunder".  On second thought, for someone with incontinence issues this may not be such a good idea....but I guess it would make me a "very dangerous" person!

Daylight Eye Trouble

Scary Scotoma

Woke up this morning feeling mighty fuzzyheaded.  Sure now it is the neurontin that I have started up again.  Trying to get ready for work this morning I experienced almost an hour of a visual scotoma that took up my entire peripheral vision fields, leaving the middle part clear until the very end.  It was like a fluctuating curtain surrounding my central vision.  I was not able to really see what I was doing so I just sat in the bathroom where I was showering until I was able to see again.

I was very confused afterward so I sat around for about an hour or so to see if the confusion would clear and it did not.  I may be having a worsening of The Headache and just not feeling pain as my left eye was not wanting to behave either.  I gave up around noon and called in and told work I would not be able to make it.  I am so tired and done in I just want to give  up entirely but I will recuperate this evening, brush myself off, and try again tomorrow.

I never had a visual scotoma in my life until I took Topamax.  I was very droopy and tippy on Topamax and I started experiencing scintillating scotomas.  They disappeared after stopping Topamax, and I associated these with the intense eye pain that Topamax induced as a nondesirable side effect. I now occassionally have an episode of scintillating or non-scintillating visual scotomas, so not sure if Topamax made a permanent change somewhere in my hardwiring or if The Headache just likes to mess with my vision to throw me off stride.  I don't seem to have an increase in The Headache pain when I have these - I probably should check my blood pressure the next time (if there is a next time) this happens although I doubt if there is any physical reason for these other than The Headache.

I slept most of the day today.  At least I remember what I did today!!  Yeah!!  I'm ready for my brain to reboot and start functioning in neurontin mode again.  The Belly is not happy tonight, but I'm happy because The Legs are still - no dancing in pain for me this evening!!  Yeah again!!!

I have an appointment with Dr. House at the Washington University Neuromuscular Clinic on April 7th at nine AM concerning The Legs.  This is in St. Louis, a good four hour drive away, so I guess I will go up the evening before and stay at a hotel.  The Great Big Corporation I worked for had a base of operations in St. Louis a few blocks further downtown so I am very comfortable finding a hotel nearby.  I used to go there on a regular basis when I was a project manager for them.  I could fly in and back but flights to St. Louis from Springfield Missouri are terribly expensive - I guess because business customers will pay whatever the rate may be if there is a need for the flight.  I think this will be another dead end for me concerning The Legs but I promised myself last fall I will be persistant in trying to find a solution to The Legs.  Washington University has a world class neurology department so hopefully if there is anything to be done Dr. House will find it.

I go to see my PCP next Monday for a followup on the neurontin, and to see how I am doing otherwise.  I am glad he is a great advocate for me with other doctors.  He tries different approaches if one is not working, something I have not had good success with convincing specialists to do.  Just wish I didn't have to see him as often as I do.  There was a day (pre cancer) when I only went to the doctor a couple of times a year to have my synthyroid dose checked.  Now I go to the doctor way way way too often in my estimation.  Too many systems not working right.  Big sigh.

Dr. Kildare's Crisis

Put My Cankly Foot Down

After a night of pain and cranky thoughts and almost no sleep due to driving yesterday, I woke up in a not so happy mood after my half hour of dozing.  I had found some of the records Dr. Kildare had me fill out requests for, so I called and left a voice mail for Nurse Goodguy saying that I had some copies of records that I would leave for him when I came in for my blood draw (the tests had to be fasting for Dr. Kildare).

Then I said (I hope in a nice voice but I wasn't feeling very nice) that I didn't want to say how they ran their practice or decided the frequency for visits, but if March 2011 was when I was going to get any follow up done then let's just cut to the chase and refer me to a bigger hospital in a major city. In this area, I said my preferences would be Barnes Jewish/Washington University in St. Louis (where Dr. Bellyfixer works) or KU Medical Center in Kansas City (where Doc Optimist works).  This seemed to hit a sore spot, as when I got home this evening (having worked around five hours  - trying to earn a paycheck even though I am in pain, and it is very difficult for me to sit or concentrate) there was a message from Dr. Kildare.

First off,  he tried to blame the March 2011 appointment on the computerized scheduler.  I work in health care, and I have trained schedulers, and even been a scheduler once upon a time about 20 years ago.  The doctor says what frequency you return in.  If they want you back in one day, and that day is completely overbooked, the scheduler STILL sticks you in that day somewhere.  Why?  Because a physician ordered it that way.  My return appointment was "the first Thursday appointment available".  The scheduler (person) using the scheduler (computer) put this in, the first Thursday appointment available was in mid March 2011.  I asked twice, "Are you sure that is correct?  Is this what was ordered?"  since I had just come from an exam room where they had said for me to "be patient" for just a little while longer.  I don't know what universe Dr. Kildare comes from, but in mine three months is not "just a little while longer" and is beyond what I am willing to patienty wait for.

Perhaps poor Dr. Kildare is having to serve penance in my mind because when Dr. Dense was my physician and I was in incredible mindboggling daily pain with The Headache unsucessfully medicated I had no way to get any care between appointments.  The practice paid lip service to "just call and we will take care of you" when in reality it was call, be ignored, call back, have the nurse get snippy, call back, be told you need to go somewhere else. 

I will call tomorrow and either talk to Dr. Kildare's nurse, Nurse Goodguy's nurse, Dr. Kildare, or Nurse Goodguy and reply to my message.  Dr. Kildare asked in his message that I give them a couple of weeks to read my records and come up with a game plan.  I don't mind giving them a couple of weeks or even a month if I have to, but I am NOT waiting another three months, just to find out in three months there is nothing that they will or can do and I am another three months in pain and another three months further disabled and another three months up the creek without a paddle.  This has been ongoing for about a month messing with this and that, and I have been messed with enough. 

He also said if I had a problem with my return visit, I should have said something at the time.  I did!  The nurse AND the scheduler told me they were not willing to question Dr. Kildare as he had distinctly scribbled "Next Avail Thurs" on my "superbill" in the followup section.  I wasn't going to sit there and argue with them, they knew Dr. Kildare better than I did.  Guess Dr. Kildare is more than a little defensive about this.

Hoping I get lucky and Dr. Kildare gets lucky and I have a nutritional deficiency.  Maybe that will fix everything and I can take a pill and everything will be perfect from then on!!!  Hoping my blood tests are back tomorrow then I can find out.

The Dr. Dense Backstory:

I was in excruciating pain so bad I was in tears the day I called it quits with Dr. Dense.  It was mid summer 2008.  Dr. Dense had tried different medications since I started seing her in January that year: none worked. She ignored the records I finally got transferred to her from St. Louis University Hospital where I had been diagnosed with an indomethacin responsive headache, although she was the one who referred me there. The last medication she tried had been lithium which definitely did not agree with me.  I refused to take it after the second week.  She refused to prescribe anything else.  This was the third time since I had seen her that she simply left me without any medication or adequate pain managment for a significant number of days/weeks.

The day before she said she wouldn't prescribe indomethacin (hemicrania continua is an indomethacin responsive headache disorder - nothing else really works well) but she would hospitalize me for a three day infusion with DHE, depakote, and steroids.  I agreed because something was better than nothing which is what Dr. Dense had me on at the time. The nurse got all the permissions/preauthorizations done, called me said she was waiting for the doctor to say when I should go in.  I waited and waited and waited when I should have been at an emergency room.  The nurse calls back at the end of the day saying Dr. Dense, although in the office, was not responding to her requests for an admission time. 

 I called back the next morning in full melt down, and the nurse said very apologetically that Dr. Dense wouldn't admit me until the middle of the next week, as she was on call then.  I asked why she wouldn't admit me this week, as I was getting to the place I would not be able to drive myself to the hospital, and Dr. Dense actually said because she didn't want to inconvenience the other doctor who was on call that day.  WHAT????  The last straw was when I got the office manager involved and asked if Dr. Dense would reconsider prescribing the indomethacin as it actually reduced the pain, and Dr. Dense told her she would do that ONLY if I came in and signed an agreement that I would not see her again and I would get another doctor.  WHAT??? 

Idiotic, egotistical, unprofessional, unethical, arrogant, rude and offensive all at once - she was giving me the complete Doctor God package.  I went to the ER got medicated by some miscellaneous ER doc and as soon as I could I went back to my PCP and got referred to sweet Doc Optimist in Kansas City.  I guess Dr. Dense got her way as I have not seen her again nor do I wish to.

Anemic

A Reason For Being Tired

Dr. Calm had some preliminary blood tests done before starting me on cyclosporine.  Got the results back and I am a bit anemic.  Looked up the symptoms and they were very similar to the symptoms for hypothyroidism:  bone tired fatigue, cold extremities, mental fog, lightheadedness... the list goes on.  Being dehydrated can even make the symptoms worse, I guess because your blood volume is depleted to a certain extent.  Sounds a lot like I have been feeling, so glad its such a benign problem.

My feet are just ballooning and my face continues to feel puffy but The Hives have been breaking out all day big time, so not sure if this is the cause of the cankles.  Would like to be cankle free when flying up to Michigan in another week.  Maybe I can blame the cankles on anemia??  That would be something I could fix anyway!  If the cankles get canklier tomorrow I will call my PCP to see if there is anything I can do.  I won't have any shoes that will fit if I don't!!!

Feeling better tonight.  Maybe knowing there might be a physical reason for feeling like I've been pulling a barge over a sandbar has given me a boost.  Or maybe I'm just more cheerful earlier in the evening?? Or perhaps its the moon signs again??  Or just knowing out there in the blogaverse people notice and people care? Hard to tell.  I'll take what I can get no matter why.

I have a lot of health problems including malabsorption and chronic pancreatitis which could contribute to being a little anemic.  Will see if I can supplement with some sublingual vitamins since I don't digest most things very well.  That may be all the pick me up I need!

Hoping it is a great fall night for everyone and that you are all cankle free!!!

Falling Leaves

Falling Mood

Having a melancholy day today.   Feeling sick, feeling down.  It's raining, cool wet rain. Leaves are turning colors and falling in a turning twisting cascades. It's my favorite time of year, but I'm not feeling it. I am feeling icky instead.

Very tired tonight, not sure why. I have been having my normal non-sleeping nights with The Headache, so I am at a normal rate of sleep deprivation.  My antibiotics are helping some of my abdominal pain but my puffiness is continuing unabated.  Maybe my puffination is taking energy from somewhere else and putting it towards poofy puffy cheeks and cankley chunky feets??  I feel like the giant Stay Puft marshmallow man from Ghostbusters.

I actually napped yesterday. I never ever nap.  Yet my tiredness yesterday was the same as it is today.  I just don't know what is causing this.  The Headache has been on medium high today, but not to the "must medicate" point.  Maybe this is what is wearing me down?  I am walking through quicksand with each step forward getting harder and harder to do.  I feel very very shakey and weak.   Bleh...  Blech... Blah...

Worked from home today because I had to take a relative to a physical therapy appointment.  Will do that again Wednesday.  May have to do this the rest of the month while we try to arrange rides. I'm glad my relative is getting some help with his physical issues, seems to have a great physical therapist.  Doing something with "primitive reflexes" whatever that is, but seems to already be helping him.  Said this problem is often misdiagnosed as fibromyalgia (one of many diagnosis my relative has had).

Trying to be ready to roll into work early tomorrow for a couple of meetings/conference calls.  Just feel like I don't have the umph to fight my way out of a wet paper bag tonight, but want to be bright, cheery for work.  I love my work, I love my bosses - today just has been a hard day for whatever reason. I want to shake that blah feeling off and be my usual perky loud self tomorrow.  I even let a client get under my skin in a bad way today - which has only happened a few times in the eight years I have worked at this job.   Maybe the moon signs are wrong.

I'm a true Debbie Downer tonight.  I know in the grand scheme of things one bad day is just a blip on the screen, but right now my sonar just can't see past this blipping bad day.    Tomorrow is another day....tomorrow will surely be better!!

Wishing For A Plan B

Plan A is not panning out!

Saw Dr. Hannibal Smith this week.  Unfortunately he didn't have a lot of good news for me.  Even among the best headache physicians in the country there was no consensus on how to continue to treat The Headache.  He asked about Botox and the response was mixed, so he told me we could try it but he wouldn't be able to predict the results.  I told him I would have to check into Botox injections a bit before deciding to having it done.  I have plenty of allergic reactions, and I don't want to have a three month battle with hives because I had to get Botoxed.  Plus I like having my eyebrows move, my face seems so much more human that way. 

The A-Team did an excellent job.  I was in the midst of The Headache, at the nausea stage when I got there.  Once I got back in a room, right away I was given a shot of zofran for the nausea and put in a quiet dark room.  Not used to that - normally I am tortured in brightly lit rooms, and cannot get anything for nausea etc until AFTER the doc sees me.  I am going for a psych eval to refresh my biofeedback training tomorrow and supposedly there is going to be some space aged ice pack for me to trial to see if I like it.  It sounds as if I won't be able to afford it!  Ice packs only cost a little bit and they last forever.

Saw my radiation oncologist today, Dr. Dunce #3.  He didn't tell me my problems are not from radiation exposure this time.  He did admit that I have thickening of the bowel walls which could be causing some of my symptoms (this has been present on my MRI's and CT scans since 2005).  He shooed the nurse out of the room and let me know he had gotten my lawyer's request for my records and wanted to know what I needed them for.  I explained I did not have a problem with Dr. Dunces care, but that the hospital had hired a physicist who didn't know how to do math, or probably use a computer, and had negligently provided no oversite for his calculations, and the physicist obviously did not double check his work, so I received an overdosage.  I am 4'11" tall. The report I was given said the brachytherapy had been off 4.8%, and standard deviation was 5% so they did not feel the difference was significant.  I told him what might be OK in someone of average height of is not right for someone of my stature - a couple of more inches shorther and I would need a booster seat to legally drive here.  I have still not been relased from his care and am to return in another year.

You know, I don't think I will gain one thing from my lawsuit unless it is the satisfaction that some lawyer somewhere is going to get a fat retainer from the hosptial until my case is settled or closed.  Take that Big Box Hospital!  I'll hit you where it hurts - your budget!

I am very very very tired - having only gotten a couple of hours sleep each night for almost the last two weeks.  Tuesday was a Bad Headache day and The Headache is still active tonight.  I am hoping maybe biofeedback dude might have something that will help.

Battle of the Bugs

Creepy Crawly Critters

Have had to complain to hotel management again.  This time the bugs were on my bed.  I have just gotten through ripping up my bed and shaking out all the covers.  I don't know if I'm going to get any sleep tonight at all and am much too tired to change rooms.  I did call the night desk and told them I am going to insist on an adjustment on my bill, since I complained Wednesday or rather Tuesday evening, and they were supposed to exterminate them but here they are again, off the walls and prancing around my covers.

I have the shivery skin crawling heeby jeebies, but I just have to stick it out this one more night, with check out tomorrow, and then a night in Tucson (praying for no more bugs!) waiting on my Saturday morning plane ride.  I have a dread of palmetto bugs which seem to thrive in warmer climates, but hopefully won't have any of those invading my room.  The bad part is this is such a very nice brand new hotel and I seem to have gotten the bug room.  No one else I am traveling with is having these issues.  I refuse to pay full price for a buggy room, I don't care if the client is picking up the tab.

Thinking of sleeping on the couch in my room, but it may be full of bugs too. Making my skin itch just imagining it.  At least they don't seem to be the biting type of beetles.  Maybe the extermination effort just drove them from the walls into the bed and couch.  Ick!

Ended up today very sick feeling, so skipped supper this evening, and just rested and packed my luggage for checkout tomorrow.  Almost got physically down to where I couldn't pick myself up to go today.    Really need to spend more time here, but physically I don't think I am going to be able.  The Legs are not cooperating, nor is The Belly, and The Headache has been trying to interfere the last two days. One more day I tell myself, and it will be a short day because my associate that is driving us to the hotel by the airport needs to come back tomorrow evening. And after that a loooong day of flying and airports.

Gonna have to pick up the pace tomorrow to get done what needs to be done.  The clients have been wonderful, making very good decisions about conversion issues and future planning.  I only have to explain one time and they fly with it.  Just hope they keep asking questions even when I am not physically here to answer them.  We expect a large number of support issues in the first three months after system installation is complete as people start using the system more fully.  Plus the Spanish just makes it seem much more fun, why I don't know.  I think it is because they are just a fun crew, English or Spanish language.

Going to try to go to sleep, but am sorta not wanting to turn off the lights because I won't know where the bugs are at.  Big Sigh......

IV Practice

Bent Needle Voodoo Doll Day

Haven't been posting much, have been very sick most of the week.  On Monday my primary care doc told me definitely "No More Traveling" but did I listen?  No.  I had a date with a client already set for a consulting type gig on Tuesday and had too many people depending on me to be there.  I got myself together, and my bosses had one of the programmers go with me to drive - thank goodness!  I don't know if I could've gotten back home otherwise.  It was a stretch just driving the thirty some miles from her house to mine that evening.

I ate a cup of cottage cheese at the client's cafeteria, and between that and the walking/standing all day must've thrown me over the edge.  I spend Wednesday in misery at home, not keeping fluids or medications down, and on Thursday gave up and went to the ER per my PCP's suggestion because of the dehydration.

I don't know about anyone else, but I am what they call a "hard stick" when it comes to drawing blood or putting in IV's.  Nurses always tell me: everyone says that and no one really is a hard stick, people just like to think so.  Nuh-uh.  I know so.  The local blood mobile banned me from giving blood after I threw their whole schedule off, and they didn't even get an ounce of blood out of me.  I have had phlebotomy centers send me out the back door because I had so many puffs of cotton and bandages wrapped around me they were afraid I would scare everyone in the waiting room off...and these were times when I hydrated before hand so they could actually find a vein!

I knew I was in for it when the triage nurse tried to get a vein for blood testing and gave up after one stick.  When I finally got back in an ER room I had six different nurses try to get an IV started, including a couple with an ultrasound machine looking for deeper veins.  They finally got enough out of semi dry holes to get the blood testing done, but I lost count at 12 sticks on trying to get an IV started.  They even went for the neck and the front shoulder area, but everything was just drying up on them.  I am still bruised and sore from the attempts.  It wasn't the nurses' fault, but it was a bad ordeal for me, it took two hours to get an IV started.  I was tilted head down, arms hung at odd angles, pumped my fist - nothing worked. Made me wish I still had the PICC line they installed when I was in hospital at the beginning of the month.   Maybe I just should have a permanent spigot implanted so I could just turn it on when needed and off when not.  I think they were using old bent needles to thread the IV.

The winner finally thought to use a pediatric IV start kit and went in through the underside of my wrist.  Woo Hoo! I'm gonna remember that trick! I try not to jinx the nurses or lab techs by saying anything - I let them pick whatever they think will work for them and go at it, but when they get to the third stick I generally tell them my average is three sticks, and I'm OK up to seven sticks - then I get sorta shakey/whiney. 

I got some fluids, felt much better (my kidneys had sorta stopped working) and then was told from the testing that all of my nausea and back pain was from a kidney infection and a complicated UTI.  It was 360 degrees back to where I had ended June - thinking I had a kidney infection except this time it really was!  It took two times getting the perscription for antibiotics straightened out (don't doctors ever read your allergy listing?) and I was home around eleven PM.  I get infections when I get dehydrated and it certainly has been a month of it, so I wasn't very surprised.

I was very very sick Friday, but am feeling some better today.  Have kept fluids down and actually eaten a little food that is actual real food!  I have got to travel out of state in another week, and will just have to be strong and bear with it if the medication just doesn't cut it.  I have this dread of being stuck in a hotel room in the kind of pain I have been in, or as sick as I have been feeling.  Hoping to heck the antibiotics are just what I need.  Gotta get back to work Monday - I certainly didn't plan on the problems I had last week.

My bosses are trying to hire another associate who can do more traveling and cover the part I am barely able to do now.  It is so sweet of them, and I hope I can hang on long enough to train whoever they hire.  I just can't leave them hanging without someone to take over. I am skirting the edge of hospitalization and racking up the medical bills just to keep working ($400 in ER copays in July), and am afraid of making my complex health situation worse to the point I won't be able to work at all.

I know it isn't good business sense for me to keep doing this to myself or for my bosses to try to depend on me.  I want to do the best I can, and physically just haven't been in the shape to even show up.  Augggggh!  And home just goes to pot.  I need desparately to do things around the house tomorrow, and am hoping I will be feeling so much better I can put out a spurt of super energy and actually clean.  Maybe I will be more positive and feeling so much better these last few weeks will disappear into dim memories of misery and my next few years will be fantastic!

The Headache has been behaving this week, just with some jabs/jolts lightening fast pain off and on.  The Belly is better today, so hoping maybe between the antibiotics and the fluid this week I am on the mend.  Otherwise was thinking I should just throw in the towel and give up working.  I am just very very discouraged at my inability to keep my ship afloat this month.  Very very tired too.  sigh.  Hoping for a great Sunday, and a great week next week and the week after!

Phoning It In

Not my Best Effort

Went to work today, and was able to be productive for five hours, but how productive I don't know.  I am so sick feeling I am confused.  My physical coordination is off too, so my brain is definitely not in synch with the rest of the world.  I feel like I cheated, and went to work and didn't work.

I was productive, but the day was sorta in a fog.  I even ran over a curb on my way home, on a route I have driven a thousand times.  I can't think, even this evening, not sure what to do about this - its a new difficulty.  We are in the middle of a new install (AGAIN!) and I don't have time for this nonsense.

I worry about work, like it's my business.  I know my bosses know what they are doing and I know they can perfectly well get along without me or my input.  I am so glad they hired the new trainer, because that means they need me even less.  I am the weak link in their chain and as sick as I feel, I don't want to be the link that breaks the chain - I would rather just let them mend the chain around me then cut me out.  They have people that can do what I do and do it better than I am capable of at the moment.  When I feel like I did today, just going through the motions - even getting some things done, I think they would be better off just replacing me.

I see my PCP tomorrow afternoon, and the A-Team on Thursday.  Not sure if anything medical remains to be done that I have not done already.  Tonight I am ready to throw in the towel, call it quits, run for the border, retire prematurely.  I would except for two things - 1) I am not independently wealthy and 2) I wouldn't leave my company in the lurch.  Things are not as they should be as far as training others on what I know/do.  Just a little more and I think they will be able to fly away on their own.  And as for the independently wealthy part, I could work at a job closer to home, or try to consult - have done it before, can do it again - just with every body part in revolt I hate to start a new endeavor, and it would probably be 18 months to see if I qualify for permanent disability.

I just need to suck it up once more, splash cold water in my face, eat a couple more saltines, go to bed and go to work tomorrow.  One bad thing about an inflamed pancreas - its kinda smooshy and ouchy and the more I move the more it hurts regardless of how little I eat.  I think I will just gird up the pancreas and push onward regardless!

Showers of Saltines

At Last Something To Eat!

Woo Hoo!  All is looking up in my dreary world of nothing by mouth except ice chips and medication.  I have graduated to real fluids and SALTINE CRACKERS!!!  No Fat Saltines at least bring a bit of salt and flavor to the feast.  Had a little lemonade with ice chips too!

I stayed home almost all this week.  I need to be at work, but finally realized after the ER doc giving me a talking to that if I didn't rest my body I was going to end up back in the hospital.  I would do almost anything to avoid that!  Not sure if anyone has been hospitalized for pancreatitis out there in blog reader land but it is a combination of the most boring experience I have ever had and the least rest I have ever had.  You basically get the worst food in the world when you can finally eat because you always start with a liquid diet, and you are sick enough and drugged enough it is difficult to concentrate or read.  They did issue me some ear plugs to use so at least I could sleep a little bit,  because the noise and turmoil get to me.

I called today and cancelled my trip next week to Cleveland to finish the study.  My study coordinator (who is the sweetest lady in the world) said she would see if I have to reschedule or if I could return the diary through the mail.  The study sponsors have to OK it.  I told her I just couldn't face traveling so soon.

I am having trouble staying awake.  This is getting especially dangerous for driving - another reason to stay off work this week.  I have been having to pull off three or four times in a 45 minute commute to sleep five or ten minutes before I can drive onwards.  Very unusual for me - it was happening at longer distances where I had to drive over an hour, but now I can't seem to be able to drive more than short distances before I have to sleep.  This is without any pain medication in me, not sure how bad it would be if I tried it with pain meds.

Going to bed now, and hopefully sleep in again tomorrow.  I have been able to go all day today without any pain medication and still eat a tiny bit.  Am ready to dig in and get going at work next week!

Life's Not a Teddy Bear Picnic

Using up one of my allotted Self Pity Days

Very sad tonight.  Not sure if it is the pain, the futility, the medication, the fatigue, the hunger, or the insensitivity of my family that is making me use up one of my precious self pity days.  Could it be a combination of all?  Yes indeed it could.

I am tired to the limp rag stage of fatigue. Didn't work today because of pain and medication for pain.  I cannot sleep due to the pain (even with oxycontin 2x daily) and am contemplating just not taking any pain medication tomorrow so I can work.  My bosses have been wonderful, but I feel I am letting them down too.  I am going to have to shrug off this mantel of guilt and just do what I am able to do, and ignore the rest.  I guess I will see how far I can push myself with no food, very little liquids and no pain medication.

I was selfishly counting on a little concern on how I was doing when I got home, rather than insistance on instant return to shuttle driver and provider of all needs.  My mother tries, but she is getting to the age where I am truthfully more concerned about her wellbeing when I am gone.   Just feeling the loneliness and isolation of chronic illness through a cloud of pain, nausea, and fatigue.

My bosses and friends have been great, and I am sure my family was much more supportive than I am remembering in the deep darkness of the night.  Just worried where the future is going to take me.  I was much sicker much longer this time, and was released without really having my issues resolved, mostly due to the fact that all the consulting physicians were on vacation during the 4th holiday and I needed to get back home and back to work.  Going to work tomorrow and Friday and just take it as it comes. 

Was told I would need to go back to Dr. Gnome in St. Louis again.  I can't even face the thought of the drive for the appointment and then the logistics if anything had to be done.  Too much to do this summer for work, no time to take for non emergency treatment.  Ah well, I will go be sad for a while longer, as my self pity day is not done yet, even though my family would think I was being self indulgent and selfish.  Yes I am, and I have given myself permission to be so today.

The teddy bear picnic song and dreams were a theme throughout my hospitalization this time, maybe because I was so hungry!  I kept having drugged dreams about the teddy bear picnic, maybe wishing I could go out in the woods in disguise and have a picnic with the teddy bears!

Hospitalized (AGAIN)

The Belly Revolts

Last Tuesday went to urgent care on my lunch hour because I felt really really bad.  Much pain in the midriff, was hoping it was maybe a kidney stone.  You know your life sucks when having a kidney stone is a GOOD thing!

Unfortunately it was my pancreas, with my lipase levels in the thousands so off to the hospital I go.  Luckily our client had delayed their install for this week, so I don't feel quite so bad about being sick.  Everytime I think I can just work work work like a normal person, something happens.  Big BIG sigh.

It is now Sunday July 4th - my favorite holiday of the year - and I'm stuck at the hospital, having snuck off my floor to use their very bad public kiosks to try to post something.  Can't upload or download a picture so I will illustrate later.

No food, lots of erping, lots of pain meds, a couple of nice neighbors in my room but I'm bumming.  Life could be worse.  No bad news about the pancreas, no reason for the lipase elevation, the lipase doesn't seem to want to lower very fast (my average stay for this is three days and its been six already and just hoping I get out tomorrow).  I'm blaming my trip to Cleveland as I did get a little dehydrated and they had to install a picc line instead of a standard IV because I was too dehydrated.

I did have two little cans of tomato juice today so WOW!!!  I think I'm headed down the road to recovery!  I'm going to pull up my bootstraps (or little grippy socky straps) put on my happy face, pray The Headache doesn't act up (The Legs already are) and go view the horizon this evening to see what big fireworks go off around the big city of Springfield.

Hoping all you US citizens have save and fun Fourth celebrations tonight, and if you get it a great day off tomorrow.  Eat something grilled for me!!

Pain is Knocking on My Noggin

Ice Pack Heaven

Did too much this week/weekend. Things had to be done, so I did them. I knew what could happen but sometimes you just do what is necessary then deal with the consequences if and when they come. Thank heavens for my handy dandy old fashioned ice pack! I am setting here typing with one balanced on my painful brain.

Tonight the ice is keeping pace with the pain. The stimulator is buzzing away but the pain has increased to the point it is not able to contain it. Tomorrow I pray that The Headache will calm down. The present exacerbation started on Thursday, and hopefully should be winding down tonight, still staying in that old three to four day cycle.

I have tons of work to do tomorrow, plus a GI doctor appointment, and then I have to leave at 5:30 a.m. Tuesday to travel to a client. I have no time for The Headache. It's a jealous thing, so I am sure as soon as it realizes I absolutely have no time for it, it will make itself known. I think I will be packing ice packs for next week's travel. Hotels always have an ice machine somewhere!

I haven't had time to go see my PCP to get some kind of rescue medication so I am hoping I am not due for another Bad Headache Day for a few weeks. Time is such a precious thing, and productive time is even more precious. Time keeps on slippin' into the future!!!

Tired of Winter

Ready for Spring

I'm tired of dreary weather, and I'm ready for spring to be here.  I want green grass and warm breezes, shady trees and flowers blooming.  I'm also just plain tired, so spring come soon.  I'm waiting for the robins!

I'm at that tired point right now that I can't rest because of it.  The fatigue keeps building, and I just get more tired rather than more rested.  Wishing I was younger and had that stamina that wouldn't stop for anything.  Too tired for words and unable to fall asleep, a combination that is a no-win situation.

Diana Lee has published her newest Headache Blog Carnival about Opening Up to Family and Friends at her blog Somebody Heal Me.  As always there are some thought provoking entries.  I am so glad Diana Lee is able to coordinate this in spite of her own disabling headache condition.

I'm Pixilated

Where's Harvey When You Need Him...

Thinking today about internal attitude. One of my favorite movies of all time, Harvey with James Stewart, not only makes me laugh it makes me think.  It's all about taking the alternative path through life, the road less traveled.  My favorite quote is:

"In this world, Elwood, you must be oh so smart or oh so pleasant."

Well, for years I was smart. I recommend pleasant.

—James Stewart as Elwood P. Dowd,

I would love to be able to wander through the world, pleasantly surprised by everything just as Elwood was in the movie.  I tend to veer towards the logical smart side of the world, to the point I sometimes don't connect with others as well as I should.  I have built skills over the years to shore up this weak point in my personality, but under stress I have to pointedly refresh my committment to "pleasant".  

I was a disgruntled young person when I was in my early twenties until I dissected why I was being miserable.  I discovered that everytime I was angry or disappointed I had made the decision myself to experience that negative emotion.  I decided if that was the case, why not make a concerted effort to feel happy and joyous and positive instead?  It made a great difference in my life, and still does to this day but the old negativity still creeps in when I least expect it. 

I am adjusting my attitude, putting my positive foot foward, thinking sunshiney thoughts before heading into work tomorrow. I do wish I had a Pooka like Harvey to stop time and whisk me off to parts unknown for a day of pleasant conversation, so I could rest and rejuvinate.  No R&R time for quite a while, and I'm starting to wear down.  Sigh....