Friday, December 31, 2010

Happy New Year 2011

Thinking Happy Puppy Kitty Thoughts

Listening to New Year broadcasts on television, thinking happy puppy and kitten thoughts with rainbows and sparkles.  I'm sure I am now too old, because I am thinking with fondness of Guy Lombardo and His Royal Candians playing Auld Lang Syne. Sigh.

Spent part of my day with my friend who is very sick in the hospital - well actually an LTAC - long term acute care.  She is on a trach and can't speak but we put on silly hats and I told her to toe tap Auld Lang Syne as part of her physical therapy.  Pancreatitis is a serious disease and can cause organ failure and worse - she has been on a ventilator/respirator for two months.  It takes a while to get weaned off the equipment after being on it so long.  Praying that she is close to getting on the fast track to healing.  I am spelling her daughter this weekend, since her other daughter could not make it.  Makes my problems fade into nothingness when I am around someone who is so profoundly ill. 

Neurontin Day 3

Some of the side effects of the neurontin are fading today, hopefully my body is getting adjusted to the medication.  Unfortunately the ONE side effect I was sorta counting on was excessive sleepiness. That one just doesn't seem to be evident.  Rats!!!

My eyes are not so flippy after taking the neurontin but they have been sorta flippy all day.  By flippy they seem to take off on their own for a microsecond and I have to bring them back to attention.  I am hoping this will fade by the end of the weekend.

The worst of my pain is not being changed by this medication, but it has altered a lot of the low level burning and skin pain I have been experiencing, especially in my feet.  Maybe Dr. Kildare will have some other magic that can be thrown my way to reduce my overall pain levels further.  Maybe pigs will fly.  [Winny - behave yourself!!!]  I guess maybe I need to be more optimistic but it's not very easy tonight.

I think doctors must get complaints about pain a lot.  They seem to discount what people say about their pain, assuming they must be exaggerating or that they don't report pain properly.  If I am complaining of pain to a doctor it is because it is way past my ability to cope or handle.  It may be a personal prejudice, but I also think doctors pay more attention if a man complains of pain than if a woman complains of pain.

Have a safe and happy New Year's Eve and New Year's Day!!  Hoping for a fantastic and wonderful 2011!

Working Towards Better Attitude

Neurontin Day 2


Galatians 5:11
...the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness
Bible, New International Version (©1984)
Trying today to focus on positive aspects of my life.  I need to reach down deep and start moving forward again.  I really feel like I am on a treadmill - running and running but getting nowhere fast.  I have the scripture above hanging on the wall of my office where I can glance at it throughout the day.  I remind myself that I need to be patient and kind, steadfast and faithful in my dealings with customers and with my coworkers and family. 

Day 2 Neurontin

The leg pain has been flucutaing throughout the day, sometimes not bad, sometimes horrendous.  I have had to do the dance of pain several times today.  The pelvic pain is a little improved, but remains excruciatingly present.  The neurontin has increased the diarrhea and nausea is constant.  I am dizzy and having trouble focusing my eyes.  The burning is almost gone in my feet, but the sharp stabbing pains persist.  I am having new pain in The Belly and pray it is not pancreatitis again.  I am sleepy but I can't fall asleep.

Having hives again this evening, not as bad as yesterday.  Am going to bed in a few minutes. I feel really brain damaged this evening, suspect it is the medication, so I hope what I have written is comprehensable. I will try to sleep it off tonight   Hoping you all have pain free days and restful nights.

Wednesday, December 29, 2010

Neurontin for Nerve Pain

New Try for Old Med

Saw my PCP today and agreed to try taking neurontin again for The Legs.  This will be my third try with neurontin, the first two were flops.  Instead of titrating up, he wants me to start at 300 mg or 600 mg at bedtime.  The second time I tried neurontin it made me excessively sleepy, but not so tonight.  I had a few moments of sleepiness, but other than feeling tired (which I should - I've had about three hours sleep in as many days) I am not too sleepy.

I could not take Lyrica (for me a Dr. Jekyll and Mr. Hyde type of drug) but neurontin (gabapentin) is the precursor for Lyrica and can be used for nerve pain.  I took 300 mg at 7:30 and waited until 9:00 to take the second 300 mg.  I am very very very nauseous.  I will take some phenergan soon if I can keep it down.

Neurontin so far has taken away most of the burning pain in The Legs and almost all of the pain from touch.  The pelvic pain is still bad, but about an hour after the second dose I quit having the leg jitters from pain.  I was actually able to get up and push a swiffer mop around the kitchen without a lot of pain, which is the best it has been in months and months.

I am noticing my left eye is turning in - which it does when The Headache is bad.  The first 300 mg did rile up The Headache but I turned up the amps on my occipital stimulator and have been able to buzz it down a notch or two.   The Headache is not really happy, and I want to always keep The Headache happy and asleep!

I did not expect neurontin to effect my digestion, but it seems to have increased my intestinal motility - which is not a good thing for me, as I process food too quickly anyway.  The first 300 mg took a tiny bit of edge off the pain but I still was having severe pain in my legs and pelvic region.  The second 300 mg really worked better for the pain, but that is when the nausea started. Now three and a half hours from the first dose and two hours from the second dose my eyes are acting really funky like they can't stay looking at something very long.  I keep having to blink and redirect the eyes.  Hoping this is just temporary and will wear off.  The pelvic pain is still there, a little less than it was which is a blessing.  I don't feel very coordinated and feel a little short of breath.  Hoping this is temporary also.  I really need a pain solution that does not include narcotics.  The Headache and The Belly absolutely refuse to cooperate with narcotics.

I saw my immunologist Dr. Calm today.  I am off the cyclosporin.  Yeah!! He told me that my hives may not be connected to the mammalian meat allergy.  Bummer.  I asked him if anaphylaxis from the mammalian meat allergy could cause pancreatitis.  The first acute pancreatitis attack I had was about six hours after I ate two or three Slim Jims for lunch because I was running errands on my lunch hour.

I have a definite appointment with Dr. Kildare on Wednesday Jan 5th at 1:00.   My PCP said Dr. Kildare did call and talk with him about pain treatment options, which is the "why" for the neurontin.  At this point, I don't care what I take, as long as it works.

I feel right now like my lips are swelling and my nose is swelling and having a bit of trouble with wheezing.  Good heavens, I surely can't be allergic to neurontin.  My eyelids are itching, and my ears feel hot.  Better sign off, and take some antihistamines.  Maybe I ate something or took something OTHER than the neurontin to do this?? I did have some real butter with my low fat meal this evening. Arrrrrgh. And now The Headache is starting to spike forward through my brain from the back and come out above my left ear.

Can you run away from your body???  Wish I could!!!  Gonna antihistamine up and hope it helps!!

Calling Dr. Kildare

I'll Be Hornswoggled

Called and left a message with Dr. Kildare's nurse today.  I have an appointment tomorrow to talk to my PCP concerning effective pain management, as Dr. Kildare's nurse had told me that was who needed to manage my pain for The Legs, especially since Dr. Kildare was still reviewing my records.  I said that I had an appointment to discuss pain management and I would appreciate it if Dr. Kildare had anything he could let my PCP know that would help us make adequate plans.  I left my name, my phone number, and my PCP's name and phone number (which Dr. Kildare surely had since my PCP had referred me to him).  I didn't really expect that Dr. Kildare would have anything to add to the discussion, but thought I should give him a chance because his lack of response was going to be part of my conversation with my PCP.

When I got home this evening there was a message from Dr. Kildare's nurse on my answering machine.  I am to call back and make an appointment for January 5th with their scheduler to see Dr. Kildare.  Whether or not he has a plan is still a question in my mind.  I fully expect to arrive and get grilled again about my plethora of problems without any reference to my medical records.  I hope I will be disappointed, and he will have done his homework.  I need to get some kind of plan going so I know what actions I can take to get better, if that is possible.  I dread starting all over again one more time. 

I guess I should be glad I have an appointment before the end of March 2011.  Just wondering why wasn't this appointment scheduled when I was there?  Return in 3 wks....not too hard to write, not difficult to comprehend.  I know, blame it on the computer!  That is like saying the dog ate your homework, a disappointing lack of originality.

I wrote an email to a dear friend this week about a mutual friend who is very ill.  He told me not to "isolate yourself from those who love you".  I had to take a hard look at myself.  I am isolating myself.  I limit my contacts with old friends because I don't like to worry them.  As you can tell from this blog, I worry enough about me that they don't need to!!!  Everyone has enough burdens to bear, I don't want to add mine to thier loads.  I told him I will make reconnecting with friends my number one resolution and priority next year.

Tomorrow (or rather today since it is now early AM) I am seeing Dr. Calm the immunologist, and my PCP. The Legs are dancing tonight because it hurts too bad to hold them still.  The Headache is OK, and The Belly is behaving for now. Just hurting a little too much to sleep.  sigh.  But life is still sweet and the sky will be blue in the morning and the moon sits like a pearl in the oyster of the milky way at night and somehow someway I will continue to see the day through.

Sunday, December 26, 2010

Clowntastically Ready for Next Week


Ready for the Big Top

Had a great Christmas over at my sister's house Saturday. She cooked a low fat non-mammalian meat meal where I was able to eat ever single dish that was offered without pain or fear of hospitalization....and tasty to boot! Thank heavens for cooking challenged me, she is going to write exact how-to recipes so I can duplicate some of the dishes. I am not a person who can cook with a pinch of that and a touch of this. I need measurements, and exact steps.

I got some automated clown toys for Christmas. When asked what I wanted for Christmas a few months ago I stated I wanted Clown Happiness. Somehow anything with a clown on it makes me happy and goofy!! I am always a little goofy but viewing clowns always boosts my happiness levels.

I have a balancing clown on my desk at work that I mess with when I need to think and cruelly balancing the clown on his nose for hours makes me a happy camper. Now I have a clown that shakes his maracas, and one with crossed out eyes in the shape of x's that rides a unicycle. I may be starting my own little clown farm.

Yesterday The Headache took on a new dimension - pain in the left side of my face that was worse when I was chewing or swallowing. I had about four hours of misery from this, with bolts of nerve pain shooting across my face from the region of my left ear. It left as quickly as it came. I have "jabs and jolts" type of ice pick pain, but this was a new one. I am a little bit fearful that I may be getting some inflammation of my trigeminal nerve. Argh!!!!

Dr. Kildare's and Nurse Goodguy's nurse left me a message Friday.  I do not have low vitamin E or copper concentrations in my blood.  This rules out any metabolic cause they have come up with so far.  Still waiting for communication on what my future treatment plan for my legs looks like.  Hmmmm.  Wonder if they have looked at my records at all yet.  Likely not.

I will get with my PCP in the next couple of weeks to see what I need to do painwise and otherwise for The Legs.  I think Dr. Kildare is out chasing other rabbits and has lost track of mine.  Ah well, back to the drawing board!  Wishing I could have kept dear Dr. Welby - he sounded intelligent.  Sigh.

Very tired. I have not been taking medication for pain this last week or weekend so I can be higher functioning. Not good for me sleep wise. I will try and sleep well tonight so I can get up and go to work tomorrow.  I'm ready to take off in my clown car and get down to business..

Friday, December 24, 2010

Merry Christmas 2010

Hoping you all have a great holiday, even if its not one you celebrate!!!

The tree is up and decorated, just to take it down and put it up next week. My shopping is done, the packages are wrapped, just in time to unwrap them tomorrow!  Ready to do it all again next year!

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Wednesday, December 22, 2010

O Tannenbaum

Ready for Christmas

My older brother helped decorate my Charlie Brown Christmas tree today. Last night in one of my sleepless tries at distraction I managed to drag it out of the garage, but I couldn't find any of my Christmas decorations. My younger brother helped us organize the garage last summer, and my malfunctioning noggin couldn't remember where we had put anything. I was lucky I had covered the tree with a big pink sheet last year so it at least was easy to find.

My mom was so pleased to have the tree up even in its sad kind of bedraggled state with no ornaments. My brother took pity and went and bought more lights and some ornaments in town and decorated it. It was transformed by the time I got home, and my mom was delighted. The biggest benefit of my procrastination is that he got all the ornaments 50% off! I guess it pays to buy your decorations close to Christmas.

I have two days off this week for Christmas Holiday. I have one day off next week for New Years, and a floating holiday I will save for later. I am sure I will end up having to use it for some sort of sick day. I haven't really had a vacation in the last six years because of my terrible luck with health issues - all my time off is used for illness. I have the best bosses in the world to have put up with me and my defective body for this long!!!  I just wish I was physically in better shape to do the job they need me to do.  Sigh.

I had a great day at work, got many things done. I have to say I'm a purdy darn good trouble shooter. Now as a fixer, I'm just not as talented so it takes a little more work for me to fix things. Some I won't even attempt - best left for the professional programmers.  The Legs are bad for an hour two each day after I get there, and the same way when I get home so I am paying a price in pain for every trip.  Being able to be productive in spite of The Legs is making me happy.

To make my day even better, I was visited by a good friend at work. I was able to talk with her a bit, and go out and visit for a minute with her husband. She has the most positive attitude of anyone I have ever met, and perseverance that surmounts any obstacle. I tell her we must be long lost cousins because her family is just about the same as mine!!! She had not seen me since I had started using my cane BLING, and somehow it hadn't really occurred to me that using a cane would be a difference that was noticeable. I guess BLING is rather shiny.  We have been friends for over 15 years but I am sure neither one of us looks a day older!

I am on a new diabetic medication, Januvia, along with metformin. I ended up going to Dr. Kid's office and seeing Dr. Kid's endocrinology physician assistant, Ms. Cheerful. We discussed my options because of my refusal to take Actos (cankle maker extraordinaire) and my chronic pancreatitis. Dr. Kid wanted me to take Byetta which has the added benefit of causing weight loss but because it works by holding food in your stomach longer this won't do for me. Ms. Cheerful agreed.

Your pancreas starts producing exocrine enzymes (lipase, protease, and amylase are three main ones) to digest things in your stomach the minute something hits your stomach and keeps on going I guess until the food gets down the digestive chain a little ways. Holding food there longer would just be an exercise in increased pain that I don't want to experience. Januvia has caused problems with pancreatitis also, so I guess I will just have to watch The Belly closely for a while and see how it goes.

I got a couple of letters from Dr. Kildare's office today.  One was rescheduling my March 2011 appointment.  Sooner?? I thought incredulously.  No way!  I was rescheduled from Thursday March 24th to Monday March 28th because Dr. Kildare is not going to be in the office on the 24th.  The other letter was from Nurse Goodguy telling me that one of my blood tests was normal (CPK).  No surprise there.  Time is ticking while I am sure Dr. Kildare and Nurse Goodguy are pondering over my extensive medical record trying to come up with a treatment plan for me and The Legs.  I give them two more weeks after this Friday.  Somehow I think they are going to miss that deadline. 

I think that time actually must flow differently at Dr. Kildare's practice.  A month for me must be like a day to them.  That's my theory of relativity for medical appointments - the closer you get to the speed of "more time to deal with you than I think my time is worth", the slower it gets to your next appointment.  From the doctor's point of view however, it is a blink of an eye and there you are again: older, grumpier, not any better, he still hasn't bothered to review your records, and he can't figure out why you aren't pleased when he can't even remember why you had an appointment and doesn't have an answer for any of your questions. At this point if the doctor is not careful you reach critical mass and explode right there in front of him.

Tuesday, December 21, 2010

My Hair Hurts

Painful Face

I am proud of myself - I made it to work despite not hardly being able to walk once I got there, and I was actually productive working on three or four projects.  I didn't finish them, but I got close on a couple.  Woo Hoo!  Put the smackdown on those pesky Legs today!!!  I think my theme for the next year is going to be DISTRACTION!!!  I think it will work just as well as what the doctors have been dishing out.

Still no word from Dr. Kildare about his "plan" for my care.  I fear March 2012 may come and go before they call.  Oh well, it was a long shot at best.  In January I will have to see if I can get an appointment somewhere else.  This is excessively tiresome, but in the year of DISTRACTION maybe I can tackle The Legs and get the problem under some sort of control.  Or maybe not.

I think because of all the pain I am already experiencing today (my cup o' pain is chock full) The Headache is trying to revive.  I guess it is still the old three day cycle, as Friday was horrid, so I guess Monday has been horrid, then Thursday, then Sunday.  Yeah!!!  Christmas Eve and Christmas are not in the horrid cycle bad days, so I may get to enjoy a bit of holiday yet.

Sometimes when The Headache gets to going (like today) I experience a lot of facial pain, and anything touching it (glasses, hair, wind, me) sets it off worse.  I was told this is a type of allodynia - experiencing pain from non-painful touch.  It is a symptom that goes with the diagnosis of Hemicrania Continua, but I think most headache conditions have this as a possible symptom.  Tonight even my hair follicles seem to hurt when I move my hair.   I wonder at times like these if I need a Sinead O'Connor hair cut.  Probably the irritation of shaving my head would hurt worse than the irritation of the hair.   Dang!  Can't win for losing!

One of the problems with having too many health problems is that the problems from one distinct issue (i.e. allodynia from a headache condition) cross over and create different problems for another health issue. 

I have mild sleep apnea (diagnosed by Dr. Dense in 2008 after forcing me to take a sleep study in her freezing torture chamber / sleep center combo) and am supposed to use an APAP machine to assist with this.  Dr. Dense insisted I get this study done when first trying to treat me for The Headache, and refused to prescribe any medication until I did this. I am sure this is because she could charge several thousand dollars for reviewing a report spit out by a machine instead of just a few hundred dollars for my office visits, but I guess I'm being cynical aren't I??  Anyway, I could barely stand the wires strapped to my face for the sleep study, and THEN boy howdy try putting an elastic band tightly across some region of your head that does not like to be touched to hold a mask on.  The allodynia from The Headache prevents me from wearing the mask to assist with nighttime breathing which is supposed to help The Headache.  Impossible!

The cankle situation got totally out of hand this weekend.  I not only had cankles, but I couldn't even stick them in my big ol' cankle shoes.  I called the endocrinologist Dr. Kid to say I need a new diabetic medication, Actos is not for me or put me back on Avandamet.  The last time I took Actos I swelled up like a puffer fish, and I'm doing it again.  So this is how it works.  Called at 8:00 AM, talked with medical assistant who put a note in the system.  She said they would call the new prescription in and give me a call back.  In the meantime I make it to work, and get busy distracting myself.  At 2:30 I call my pharmacist and they have not received a new prescription.  I then call Dr. Kid's office and speak to the medical assistant who apologizes that they have not called me yet. Dr. Kid won't prescribe Avandamet, even though I had taken it for two years no problems found, so he wants to know what I want to take.  Huh??  I then tell the MA that I can't take sulfonylureas because I had had an allergic reaction to them, and I couldn't do metformin alone because I was at the limit I could tolerate.  She said they would call back or call in the script.  I wait until after 4:00 and call the pharmacy, no new script.  I call Dr. Kid's office.  They are closed.  So I guess I will try again tomorrow morning.  Big Sigh.

The lunar eclipse is starting, and I am going to run out and see what I can see.  It is very foggy tonight, so hoping the full moon is enough to burn through the clouds and the fog.

Sunday, December 19, 2010

Slip And Fall

Ready for Monday

Today I fell trying to get out of the bathtub.  I fell IN the bathtub.  I was just trying to stand.  I'm aggravated.  I'm sore. I'm bruised.  I'm OK.  I feel stupid.

The Legs are just not cooperating.  The pain is pretty severe as the fall this morning is setting in this evening plus it is compounded on top of every thing else.  Argh! I'm just trying to get ready for Monday!  No pain meds, no muscle relaxers, just trying to get by with occupying my mind with other things.  Distraction!

We are very shorthanded at work this week (we are closed Thursday and Friday and most co-workers with kids try to take the rest of the week off too!).  I don't have children, so I never try to schedule time off around Christmas, and generally get a lot of work caught up this week.  Just praying that The Legs and The Headache and The Belly will not revolt.  Just three days!  Surely I can do this.

A couple of fellow headache sufferers that I have become acquainted with over the past few months have gotten or will be getting occipital stimulators before January.  The surgery is not fun (after all it is surgery and people are poking you with sharp objects) but I hope that they will get the benefit from electrical buzzing goodness that I have.  I still have headache pain, it isn't a cure all by any means, and if I turn it off (as I found out this fall) I still have excruciating headache pain.  With it on the pain is manageable, bearable, livable and The Headache is not nearly so overpowering.

The Cleveland Clinic is possibly going to have another migraine/neurostimulator study, and I know the Mayo Clinic is going to be doing another study this coming year.  If these are like the last studies, then major medical centers across the US will be participating also.  There may be more than one study going on at the same time for different manufacturers of stimulators.  I was at the end of my rope when I got accepted into the one in 2008, and I am so grateful for the pain relief I have experienced.  Hoping more people get the opportunity to get "hardware" like mine!

I have been having some very strange dreams lately.  I suspect it is because I am not sleeping very much, so my brain is discharging random thoughts very quickly when I do sleep!  Last night I dreamed about a prehistoric raccoonchicken that was after me, chasing me.  The raccoons and foxes have been noisy at night lately, so I am sure I was melding what I was hearing with my food dilemma.  These were like the velociraptors of raccoonchickendom, and were after me big time! In the dream these were chicken sized, so I had a little advantage being taller.  The raccoonchickens also didn't have any paws like a racoon, just furry chicken wings, but there were some fiercesome spikes coming off its back. Just hoping I don't run across one in real life - they were mighty pesky critters!   I must be feeling guilty because of all the chicken I have been eating lately!

Friday, December 17, 2010

Neuropathic Pain

Hopping Legs & Hives??

I have gotten through the week without any pain meds or muscle relaxers so far. Each day I drive into work the leg pain increases.  Today I carried a few trays of veggies and fruit for the office Christmas party from my car into the office, and then took a couple of the empty (but heavy) trays back home tonight.  I don't know if I am just having trouble tonight because it is cumulative pain, or the weight of the tray (which might have been between five and ten pounds heavy) was enough extra to push me over the edge.

Last night I spent the night tossing and turning with my legs cramping and pulling.  I had nightmares about trying to climb stairs or deciding to take an elevator, and then sitting in a doctor's waiting room swinging my legs while I sit in office chairs too high off the floor for me.

I have jiggling, cramping, burning, tinging, numb, and malfunctioning legs tonight.  As the pain increases my nausea has been increasing also. The bottoms of my feet and the arches are cramping and on fire.  I feel like hot needles about six inches long are being stuck in my heels.

It's now almost 1 AM and I have been trying to outlast this since about 9:30 PM.  I think I am going to have to break into my medication.  I have had only a few hours sleep since Saturday because of the pain.  My PCP says not sleeping makes the pain worse, so I am sure that is a contributing factor.  

My knees for some reason are burning and itching too, they actually feel hot to the touch, as do the palms of my hands.  Sometimes I feel this way before I start getting hives or angioedema.  But I have been a good girl all day, and have not eaten any mammalian meats even though I was sorely tempted by something called "Settler's Beans" a gentleman at work brings every year.  It has ground beef and bacon in it so I resisted, but it was very hard to do.

I can feel hives popping out on my face so I guess I must be having an allergic reaction or mast cell degranulation.  Sometimes if I let pain get out of control I will just start hiving all over.  I think my body just doesn't like pain very much.  I think it just needs to get used to the new "normal" and move on!!!  No more drama!!!  According to what I have read about mast cell activation disorders trauma can start mast cell degranulation.  Just what I don't need tonight.

On the plus side I finished a programming task for a client today even with my brain full of cobwebs.  I felt like I actually accomplished something!  Just trying to make it until tomorrow.

I'm not feeling too well right now, as my face is starting to swell up a bit.  Maybe that is why I am having nausea and stomach pain.  Going to medicate with antihistamines as I am feeling more than a little light headed.  Just what I don't need right now. Hrmph!

Tuesday, December 14, 2010

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.

Monday, December 13, 2010

Nuclear Winny

Wasted Effort

Saw young Dr. Kildare and his NP today. His NP was very nice (I'll call him Nurse Goodguy) but young Dr. Kildare was a bust. What I expected at that practice so I was not surprised, but I am truly peeved at the total waste of my time.

I had a long spiel written about Dr. Kildare's attitude, but you know what?  I've wasted enough negative energy on him today.  Let's just say I am back to square one.  Going for blood tests tomorrow to make sure I don't have a copper deficiency or vitamin E deficiency, which with my digestive problem could be possible. I did have the expectation that Dr. Kildare would have reviewed my very extensive medical records BEFORE my appointment instead of telling me to be patient and give him time to study my records before my next appointment in MARCH 2011

On the upside, I did put in a little quality time at work, training the new guy on some support issues.  I feel really bad because I have not been able to work with him as much as I would have liked to.  I finished up one job for a client going through the steps with him, but said next month (God willing and the creek don't rise) I will be there and he will do the same monthly process and I will watch and answer questions.  He is willing to dive in, but his experience is just not as varied as mine so there is still a bit of a learning curve.  His attitude is great, and he is very nicely documenting everything and trying to flow chart processes.  His frustration is that circumstances for software support and how to do the support is as varied as the human mind can create mistakes.  There is no one correct way to fix an error, because there is no one way to create an error, or is an error when created the same way always the same error. Sigh. 

I am trying to get him as trained as possible because I am not sure what the future holds.  I was hoping for some sort of plan or finality today with Dr. Kildare but instead just ended up with more question marks. I have had at least five years of question marks, and I am sick of it.  Today just driving caused problems.  I am pain medication free and muscle relaxant free so far this week.  Not sure if I am going to stay that way but that is what I am aiming for.

I am working some tonight from home because I don't think I will be sleeping much anyway.  Maybe Dr. Kildare will be brilliant and at least will be able to tell me what the future holds sometime in March 2011.  Probably not.

Sunday, December 12, 2010

Polka Dot Winny

Ready For A New Week

I have been on a downward roll lately.   I hope that I have reached the nadir of my bell curve and am hopefully starting the long climb upwards again.  I am going to see the neuro practice tomorrow and then try to go back to work tomorrow afternoon.  The sun will be shining, the weather will be great, and my body will be cooperative!

Tonight I am hiving, polka dotted all over.  I don't know how many of you have hives, but sometimes they actually hurt and sting before they pop out.  Today has been one of those days.  Almost like being bitten by ants here and there, but there aren't any ants.  I did eat some animal protein today, but it was a piece of turkey bologna chopped up with some pickles to make a low fat mixture I put in a sandwich.  No mammalian meat, so I can't blame the polka dots on that!  I don't think the cyclosporine I am taking is doing the job.  I have another appointment with Dr. Calm the week after Christmas but not sure if the spots can wait that long before instigating another anaphylactic episode for a non-mammalian meat reason!  I  will anti-histamine up this evening and see what is left of my spots tomorrow.  Maybe I need to stop all milk products???

The pain is constant now from The Legs and pelvic areas.  I am off any pain medication or muscle relaxers at the moment, having tapered myself off.  I have also been very careful not to aggravate my issues by doing much with The Legs the last two weeks.  My brothers even went grocery shopping for me!  So nice of them (especially in this cold!).  I'll see what NP for Dr. Kildare the neuro says tomorrow.  I can't do Cymbalta or Lyrica (Cymbalta think Rocky Balboa sweating during a heavyweight bout, Lyrica think Linda Blair in the Exorcist) and have not tolerated neurontin.  Elavil and that class of medication aggravate my myoclonus (apparently I was born with that) so I won't take these.  Not sure if there is anything much left for nerve pain in these classes.  Real pain medication I have the real issues of itchiness and hives, and the fact that The Headache really doesn't like it. Arrrrgh.

I simply just won't think about it now.  I'll think about it tomorrow. After all, Tomorrow Is Another Day!

Saturday, December 11, 2010

Surrounded

Too Much Cheer

The last few years I have not enjoyed the Christmas holiday season very much.  I am overwhelmed by my health issues, my mother's health issues, worry about my siblings, financial burdens, and fatigue.  I have had something drastic happen to me or someone I care about every fall for the last four years.   Instead of anticipating traditional holiday fun I am shell shocked, waiting for the next shoe to fall, the next disaster to happen.

I find myself surrounded by people busily working on their holiday task lists - putting up decorations, buying gifts, shopping, all full of Christmas spirit.  I don't think I will be doing very much for the holidays this December as once again my timing with health issues stinks.   I try very hard not to "Bah Humbug" everyone else, or be to Grinchly, as this used to be one of my favorite times of the year too.  The entire holiday experience is overwhelming for me anymore.

Because of The Headache and The Legs, I avoid walking too much (which means even shopping - my mind still refuses to think of shopping as exertion!), avoid crowds, avoid too much bright light or too much contrasting light (dark and bright),  and avoid loud noises and way too much cheerful muzak.  I try to stick to small gatherings and avoid big family and formal parties since I think it is easier to minimize the impact of my surroundings with smaller crowds and less formal settings.  I have to admit my avoidance of holiday muzak is not due to health reasons, it comes from working at places that have non-stop holiday music for four months.  Auuuuugh!

I don't have a lot of pointers on how to maximize the holidays, as most of my holidays anymore are taken up with minimizing the scope of my celebrations.  I guess I just have to make the best of what I can do, and maybe take advantage of some of the benefits of having to take lots of different medications. I have trouble with nausea and the medication I take to control that can be very sedating.  The nausea can come from nothing, or from eating, or maybe from  way way too much cheerful muzak.  Some of the uncontrollable movement I have if I overtake these meds could make me rival Elaine's dancing on Seinfeld.  That would be a real party moment!!!  I might decide to overtake it on purpose just so I can groove to the tunes Elaine style!



Hoping you all have great fun this Holiday season, don't over do it and don't listen to way way way too much cheerful muzak.

Friday, December 10, 2010

Winny Dough Girl

Triumph Over Adversity!

Today I am dealing with the aftermath of my mammalian meat catastrophe of yesterday evening.  My brother told me this morning, yes - that WAS pork.  He didn't even think to tell me and I didn't even think to ask.   Only a teaspoonful or so of meat and about a half cup of rice and vegetables that had touched it and I had hours and hours of pain and misery.  Thanks heavens I had already been loaded up on antihistimines so it didn't get out of control!

This is what happens to me once my body decides it is going to react to something.  Each time the reaction is to smaller and smaller amounts and the reaction is more extreme.  I am hivey all over tonight with small hives, and my digestive system is still having episodes of angioedema and spikes of extreme pain.  My face and body are puffy and my nose and the insides of my ears are slightly swollen and my eyes are all scratchy.  I wish that I could just put myself through a wringer washer and squish everything out!  I feel all puffy like the Pillsbury Dough Boy, but I don't want anyone to poke me in The Belly.  It's mad enough at me right now without aggravating it further!

My blood tests came back with good news - no infection no elevated amylase or lipase, so no matter how awful The Belly is treating me it is not really out of kelter.  The nausea/vomitting are still ongoing, this is now at least five days into this.  All I ate today were some caffeinated beverages to keep going and a cup of boiled rice with some non-fat milk on it.  I will just have to be extra cautious since I gave it some delicious pork to digest and it didn't want to cooperate.

I sent some of my digestive enzymes I take for chronic pancreatitis off to the University of Virginia for analysis to make sure it is OK for me to keep taking them.   I contacted them to see if any people with the alpha-gal allergy had problems with digestive enzymes.  They are made from "porcine proteins" or in other words PORK.  The brand I was using (Panges) did not break me out in hives like another brand (Creon) did, so it may just be something in the manufacturing process and not the pork that is causing me issues, but I would rather check it out.  I ordered some vegetarian enzymes from a company another chronic pancreatitis sufferer recommended.  However, they are very expensive when you have to purchase OTC and they are not regulated by the FDA for quality or content.  There are no manufacturers of vegetarian digestive enzymes currently approved by the FDA for prescription strength therapy.  Life just gets more and more complicated.

I have an appointment on Monday to see the nurse practioner for Young Dr. Kildare the neurologist.  I guess I won't get to see kindly Dr. Welby again.  Now another level of doctoring to jump through and another neurologist I will have to endure.  Dr. Welby was such a keeper!  Maybe Dr. Kildare will be a keeper too, and the nurse practitioner.  I generally get along pretty well with NP's, just have no experience with the one at this neuro practice.  I don't hold much hope for help, as I just keep getting passed on from doctor to doctor to doctor.  This is now going onto my sixth year of having these continuing issues post radiation therapy.

I don't know if there is anything they can do for The Legs but I am willing to try almost anything.  I balk at the monitored biofeedback for "voiding" control and pelvic pain issues simply because it sounds very painful.  I am also not wanting to do physical therapy for pelvic pain, simply because when it gets going it is like this month - weeks to get it calmed down.  Before this year I could keep on motoring, buckle down and keep going, but I either just don't have the will power left or the pain tolerance I once did or the pain has just increased beyond my limits.  Maybe its all three - well, probably its all three - let's make that most certainly its all three.

The Headache is not good today but I am so pleased I was able to keep it in the bounds of non-emergency room worthy pain mostly utilizing the occipital stimulator, heat pads, and ice packs.  WooHoo!!!   This is the silver lining for my cloudy week.

I am pain medication free but I may take a Soma pill this evening without the narcotics.  I am like the walking dead in my zombified state today.  Must....get....sleep.....soon!!!  I am still plenty jiggly twitchy from yesterday so sleep will not come easily tonight.  Sigh.  But if tomorrow is as good as today and I behaving myself over the weekend I can see myself returning to work next week.  Yeah!!!

Wednesday, December 8, 2010

Bad Headache No. 6 2010

Did I Eat Mammalian Meat??

Pain everywhere this evening.  I almost cannot sort it out.  The Headache has decided to crank up the amps tonight.  Debating - should I go to the ER?  Still hoping that I can stop this runaway train before it goes off the tracks.

My facial pain is going full blast, The Headache has taken over control of my brain, and I can't think.  I'm doing the stomp of pain with my right foot trying to ride the wave until it quits.  I have changed stimulator settings three times this evening, and think that I have delayed the worst of the pain, just not sure it is stopping The Headache well enough to avoid having to be knocked out.

The Belly is cramping painfully and I am wondering if I am having another allergic reaction like I did in late October.  I ate some stir fry this evening.  I thought the protein was chicken.  Thinking now it must have been pork.  I just ate two little tiny pieces but of course the entire stir fry had touched the protein.  I didn't think to ask my brother, who cooked it up, what the protein was.  Cautious in a restaurant, careless at home.

The stomach spasms are nauseating in addition to painful.  I have upchucked my half cup of rice, vegetables and probably pork.  I can tell I am now past the point where I can hold down liquids, pills or food.  It would be a waste to take my rescue medication because it would come right back up.  I have taken 100 mg of benedryl today, 50 mg of atarax, and 100 mg of phenergan, yet the pain persists and I can't keep anything down.

The Legs and the pelvic pain are not any better.  At least I know the pain medication I was taking is not causing the nausea nor the stomach pain.

When I have pancreatitis attacks sometimes I smell a certain smell.  It's sorta metallic sorta sickening, and I'm smelling it tonight.   I smelled it all during my first pancreatitis attack, and I thought at first it was the hospital - now I know its just me and my electrolytes.  Maybe the belly pain is just because I tried to eat something, not an allergic reaction?  Not sure since I have so many antihistimines in my body right now, just took 50 mg of benedryl and 25 mg of phenergan about 2 hours ago so I can't tell if I'm trying to go anaphylactic.  The belly pain did start approximate 4 hours after eating which is very similar to the problem I had in October.

Going to put my heating pad back on, and then try ice packs.  Everyone here at home is asleep.  If I have to go to the ER I will have to wake someone up.  I hate to have to do that.  This won't be the first time or the last time I sit up nursing The Headache.  I certainly hope it appreciates me taking care of it!!!

Very disappointed today as I decided I would not be able to attend my niece's wedding in Kansas.  I did make sure her gift should be delivered hopefully by Friday since my Mom and I could not make it.  Thank heaven for overnight shipping!

Tuesday, December 7, 2010

Consumed

Surrounded

No pain meds today so I am consumed with fiery nerve defining pain.  Trying to see if the nausea is from me or the medication.  So far it seems to be me.  Not having any urges or physical feelings of withdrawal so now am certain I have not achieved physical dependence on the medication yet.

Went to my PCP and met with his nurse practitioner today to see if I can get a handle on the nausea and the pain.  I don't know if I have any pain management options left as the medication I have is about the strongest you can get, although you can get higher doses.  I have gotten such different opinions on spinal stimulation I am leery about even doing the trial.  Issues like incontinence become more important if I would have an open wound for a week. 

The NP gave me a prescription for suppository anti-nausea medication (promethazine) since I am having trouble holding down oral medication.  However, with other problems I have suppositories are not a very practical solution.  She also had blood taken so she could verify whether or not I had an infection (CBC) and also took samples to test amylase and lipase levels in case The Belly and my picky pancreas are what is causing all the trouble.  She also is going to check on the results of the EMG and which doctor I should follow up with (now not only is there my PCP and Dr. Welby, but Young Dr. Kildare head of the neurology department somehow got mixed in...I can't keep up!!!  I'm running out of psuedonyms).

The Legs and the pelvic pain acted up this afternoon - I am sure it was the second there was not a drop of pain medication in my body left.  I am finding it difficult to do anything, with the pain burning along my ganglion pathways.  I am just going to try to do the best I can.  The Headache is not happy either as I think my cup of pain is currently overflowing big time.  This was one of those days when taking blood felt like being stabbed with an ice pick instead of just a little poke.  I have been cold all evening unable to get warm and I am sure this is due to the pain levels being too high.  Not really able to eat anything either, so I don't have a lot of fuel in my system to run my engines and keep me warm.

The nausea is still ever present, The Headache is pounding.  The Legs are cramping. The Belly is hurting. I am whining.  I am going to go curl up with a heating pad and see if I can rest a bit.  Afraid there won't be a lot of sleep tonight for me.  Hoping against hope if I just tough it out the pain levels will drop and I can get back to almost normal. 

I complain a lot about my lot in life, but there are people out there with much worse problems than mine, problems that aren't just painful but have a host of other difficulties too.  There are children who endure procedure after procedure not only with patience but also grace, making the best of the situation they are dealt.  I remind myself that my pain and my personal suffering is just a drop in the world's ocean of hurt, and I should be able to function better with the blessings I have. 

I think I am going to work tonight trying to disect my pain and nausea and figure out if I can use biofeedback more effectively than I currently am able.  Onward and Upward!!

Dejavu All Over Again

Still Sick Still Hurting Still at Home

I tried to go off the pain medication last night/this morning, but got very shakey with burning terrible pelvic pain and leg pain.  Vomiting also, with a great deal of nausea. Hoping that I have not gotten a physical dependence on this already, as I have not been taking it steadily, everyday, or on schedule.  The nausea stayed with me even after taking a dose of medication this morning, but the pelvic pain did decrease to the point I could actually think of something besides the pain.

Went to my PCP this morning to do a urinalysis since I can't tell if I have a urinary tract infection or not.  Nope, no infection.  Was hoping this was the cause of the terrible pain and nausea and vomiting.  I fear that The Belly is acting up and my pancreas is trying to get into the act again.  Not good.  Can't win for losing with pain pills.  I should take one every 12 hours but have only been taking one a day when I absolutely cannot stand the pain any longer so haven't been taking one every day.  Have been taking nausea medication but have been thowing that up too.  sigh.

Talked with my boss today about my ongoing pain issues since I am not sure when this will relent.  The Legs are being very stubbon this time.  It's like they are flat tires and I am afraid they won't reinflate and work again and I'm having to go around on that tiny little spare tire you can only drive so fast on.  My boss was so nice and understanding and I feel so sad that I can't make my legs go and whip into work and get things done.  Hoping that I will snap back out of this and the pain will be manageable again soon.

I feel this fall like I'm in the movie Groundhog Day with Bill Murray - the same day keeps playing over and over again and I don't seem to be getting the process down pat so I can escape.  Oh well, at least I like Sonny and Cher!

Saturday, December 4, 2010

400th Post - Woo Hoo!!!

Am I Blabby or What?

I've managed to output 400 posts in about 700 days, with over 11,000 views from 3,200 different computer addresses.  Whew!  What a mouthful of statistics!  I am sure 10,000 of the 11,000 views were me double checking my terrible spelling.

My most searched phrases?? 
1. Headache - no surprise there
2. Bilious Emesis - surprising to me that this has world wide appeal
3. Scintillating Scotoma - this is popular especially in Europe

The post seen by the most disparate places in the globe?
Mouse Hunt from December 2009 - showing that there are mice infestations EVERYWHERE!

Probably the most incorrectly interpreted keyword on my blog:
BLING - I don't think the search engines are looking for a cane when grabbing onto my URL.

The weirdest keyword combo the web crawlers have grabbed:
Hephaestus god of fire - from my oh so classical poooehem from last spring

I did a workup of my post labels to see what I have been writing about for the last couple of years.  Being an  analytical type of nerd I drew up a little pie chart of my research for your perusement.

The majority of my complaining seems to be about The Headache.  Griping about anything in a general way seems to be the next big category. Next on the list is The Belly and all its moaning and groaning. Writing about silly things seems to tie for frequency with complaining about The Legs and all of  my medications. Work comes in close, with The Hives and my various complaints and complements about doctors coming in last.

I found several different doctors listed under their various pseudonyms:

Dr's. Dunce (1, 2, & 3)
Doc Optimist
Dr. Hawkeye
Dr. Sassypants
Dr. Gnome
Dr. Bellyfixer
Dr. Calm
Dr. Dense
Dr. Hannibal Smith (and the A-Team)
Dr. Jock Biodude
Dr. Welby

I also have mentioned Dr. Nagy Mekhail of the Cleveland Clinic, who does not need a pseudonym: he is the wonderful pain management doctor that installed my occipital stimulator.

Of them all, Dr. Gnome is the one that makes me laugh when I think of him.  If I ever met him when I was not drugged or sedated I probably would be greatly disappointed as his shiny gnomish blond curl on his forehead was probably a figment of my imagination, and he probably is a tad bit over three feet tall.  Sigh.  But his cheeks were so appley red, and..and....I just need to get over it - he REALLY isn't a gnome.  Sigh again.

Trying to get myself back in my old positive mood.  This fall has taken its toll on my body and my mood.  Just tired, I think, and The Belly is throwing a fit this evening just when I thought it was safe to ignore it.  I am surprised I have had enough to say and write about to make it to 400 posts.  I am sure there is a lot of repetition because in my life there is a lot of repetition.  Was that phrase repetitiously redundant?  I think I am too tired to care!  I have met a lot of interesting and wonderful people in the last two years doing this, and love my "virtual" community.  I hope to remain an active citizen in this community for at least a little while longer!

PS:  Just a side note, but really REALLY are there THAT many people out there in the world interested in bilious EMESIS???

PPS:  Just thought after rereading this (see what I mean about 10,000 of the 11,000 hits were my own??) that I should explain that on my pie chart WORK is not really a complaint category - it is sorta like the silliness category, although I suspect there are some complaints about hotel rooms and bugs thrown in there.

Friday, December 3, 2010

Screaming Inside

End of a Bad Week

Not a great week this week.  Glad to be rid of it and moving on to next week. The Legs and The Belly and The Headache and The Hives have all decided to descend on me this week.   I have been medicating more than I like to, and since I impulsively deleted data during my last hiatus in medicated Hell I did not try to work at all this week.  Not happy at all!

I am having difficulty sitting still this evening between all my oooboos and my hives.  Doing the dance of pain while trying to avoid scratching too much.  I fear it is my pain medication which is making the scratching and the hiving increase.  Just ready to sit here and scream, but I am practicing serenity and calmness so I am just screaming silently.

Everywhere my clothing touches my body, every bend and joint and wrinkle, is scratchy itchy burning lumpy misery.  I've been worse but it still is not pleasant.  My pain is less because I am medicated, but it doesn't do much good if I replace the pain with jumping nerve wracking hives.  Worried because I am almost out of pain medication options and since this reaction seems to be increasing with each dose of pain medication I have taken I fear this med is going to be off my list of remedies permanently.

I'm going to take a second dose of prednisone to see if it helps this evening.  It may be why the jitters are worse, since prednisone makes me a worse insomniac than I am already.  Oh what a tangled web of chemicals I have woven for myself.  Argh!
I woke up grumpy and itchy and in pain.  Not my usual cheerful self.   Need to do an attitude adjustment tonight in my sleep and slough off all my negativity and get back to my sunshiney normal disposition.  But even the bottoms of my feet itch so I'm definitely whiney.  On the upside my Mom is getting back to her normal grumpy self which makes my heart happy. 

If Mom has the energy to gripe then she is feeling much better!  I told her we are going to both be old grumpy seniors that sit around and complain about all the young whippersnappers and their strange disrepectful ways.  That generally elicits a laugh from Mom!  We worked on a crossword puzzle together this evening, and Mom was better at it than me.  I'm going to blame my lack of performance on my medication, but really my 80 year old Mom is fantastic at crosswords!  Hope I am that sharp if I make it to 80.

I'm going to go and slather my lumps in something to reduce the itching and go to bed. 

Thursday, December 2, 2010

Good News?? Not sure yet

Preliminary EMG Results

My PCP's office called today, and my EMG results came back as "normal".  Since Dr. Welby told me that he was sure what I didn't have, and discussed treatment for radiation induced lumbosacral plexopathy and possible cauda equina issues to boot, this is a little confusing.  Not sure if I should be happy (no bad problems found) or unhappy (no bad problems found but symptoms persist).

Did some research tonight when I was able to sit, and found that EMG results on lumbosacral plexopathies are often inconclusive or negative due to the complexity of the lumbosacral plexus and the deep tissue and bony encapsulation of some of the pelvic innervation structure.  Wondering if Dr. Welby's test was a waste of time and money.  Or is it a ray of hope?  At least I know I don't have peripheral neuropathy in my lower limbs to blame my burning buzzing feet and lack of sensation on.

My PCP's office said that my PCP needed to consult with Dr. Welby on treatment planning, so that is confusing also.  What treatment planning is needed if testing is normal (even though my pain and weakness is continuing and not normal)??  This is where practical knowledge and medicine part company.  All I know is that my pelvic pain has been terrible today - whatever is causing it!

As Danny Kaye said in the movie "The Court Jester":  The vestle with the pestle has the pellet with the poison, the chalice with the palace has the brew that is true.  Or does it?? Just remember that!!! So which is right - lumbosacral plexopathy or normal nerve functions? I think I just end up with the pellet with the poison every time!

Wednesday, December 1, 2010

No More Mammalian Meat

Just What I Need - Another Problem

Got a call from Dr. Calm's office (my immunologist) today and I definitely have an "alpha-gal" mammalian meat allergy.  The hamburger I ate a few weeks ago was the cause of my anaphylactic reaction.  The jury apparently is still out on the c-kit mutation test for mastocytosis.  No more mammalian meats or mammalian meat byproducts or fats allowed! 

When I had the EMG done for the radiation induced lumbosacral plexopathy (try and say that three times in a row really fast - not hardly possible) Dr. Welby commented on my occipital nerve stimulator, saying I was a really special person to have one of those, meaning he didn't see THAT too often.  I told him my theory that I am the "nexus" of weird diseases, and I really want the merry go round to stop and let me off!  Well, now I have one more weird disease!

Guess my tick bites here in southwest Missouri (not far from Arkansas) have set me up to be fatally allergic to beef, pork and other mammalian meats!  Trying to have a sense of humor about it, I started getting a list together of new things I cannot eat:

Platypus
Whale
Dolphin (well, tuna was already off the list so no accidental dolphin eating here)
Venison
Rabbit
Squirrel
Possum
Elephant
Mice
Antelope
Bison
Elk
Seal
Manatee
Sea otter
Polar Bear
Dog
Cat
Tiger
Musk Ox

Apparently I could be a cannibal, because human meat does not contain "alpha-gal" nor do the higher apes like chimpanzees and gorillas.  Ummm, baked gorilla - no thanks.  I think this about makes eating out in a restaurant impossible as I am about out of foods that cannot be cross contaminated in a kitchen.

Proteins I can still eat (deadly allergic to seafood and fish so they are off the list):

Snake
chicken
Alligator
Chicken
Turtle
Chicken..
Turkey
Chicken....
Grouse
Chicken......
Parrot
Chicken........
Lizards
Chicken...........
Quail
CHICKEN...........

I think I'm getting carried away with chicken, which is the protein I eat the most of anyway.

You know, when something is restricted from your food list you start yearning for it even when it is something (like beef and pork) that you don't really eat that often.  I also started thinking of things I eat or take that have mammal protein in them - gelatin capsules for pills, pancreatic enzymes for digestion, refried beans, tortillas, jello, lunch meat - ouch!!  Too much for The Headache to handle!

My mom was doing better by this afternoon with her dizziness.  Hoping this means the antivert is working, and it is only an inner ear problem.  She is perking up a bit, more like her regular self.  This at least seems to be going well!  Yeah!

This week has not been good for me healthwise. Monday evening I was trying to sleep and in a lot of pelvic and back and leg pain.  I drifted off and was dreaming I was screaming in pain.  I woke up and I was actually laying there screaming "EEEEEEEEEEEEE" so I guess it wasn't a dream.  I did medicate and have stayed home the last two days partly because my Mom needed help, but also because I am in an incredible amount of pain.  In addition to the pain I am extremely nauseated and I have hives in batches several places on my body.  I went without pain medication most of today and the nausea was still there so the "medication is to blame" theory bit the dust.  I fear The Belly may be riled up in addition to everything else.  This is messing with my need to do things and be at work and concentrate and I am not happy about it one bit. Pain pain go away, come again another day!!!

I think Karma is working against me for some reason, or maybe it is because the evil thought crossed my mind that I might have wanted to eat a duck billed platypus for dinner or chow down on a poor manatee.  The ghosts of all those future chickens I will be eating are going to haunt me now!

Monday, November 29, 2010

Worried

Long Day


Over Thanksgiving my Mom, who is 80, had a dizzy spell.  We thought maybe she had just gotten too interested in everybody and everything and not eaten correctly.  Friday she had a brief spell at 5 AM, on Saturday she was better, on Sunday she had another brief episode, and this morning she was again unable to talk and very nauseated due to the dizziness.  She caught me just as I was ready to go out the door to commute to work.

I remembered to take her blood sugar in order to make sure she was not having low blood sugar.  Nope, normal.  She didn't feel better after drinking some coffee and eating something.  I gave her a choice - urgent care, emergency room, or doctor visit.  She chose emergency room, and the one closest to us.

Once there we waited and waited and waited.  There had been some ice or heavy frost that morning, and there were 4 different people there with falls.  Mom's blood pressure was pretty elevated, and she was still dizzy by the time the triage nurse got to talk to her.

The end result of the visit is that #1) Mom is having an inner ear disturbance/infection.  or #2) Mom has had a slight stroke in the vestibular area of the brain.  The doc gave a script for anti-vert in case #1 was true.  He suggested watchful waiting to make sure that #2 was not true.  He said the only treatment for that type of stroke would be blood thinners, and Mom is already on those.  If she does not improve in a couple of days we are to go to her regular doc.

I'm hiving pretty big time this evening and ready to go to sleep.  Not sure what to do about work.  I feel I need to wait until Mom wakes up and see how she is doing before I make any decisions tomorrow.  Hoping the antivert will make her less dizzy, but not confident that it will.

Autonomic Nervous System

Sympathy for my Not so Sympathetic Nerves

I haven't felt well this weekend, as often happens when I don't feel well I research.  Not sure what I think this accomplishes but inwardly it often gives me a feeling that I am still moving forward no matter how stalled out I am in real life.  I am always happy if I think I have discovered something that explains a symptom I didn't really understand before.  Again - this can be just my imagination working overtime, but at least I'm not sitting here stuck in the "I'm in pain" loop.

If you have never experienced the "I'm in pain" loop my brain thinks like this:
"I'm in pain"  (sad and wimpy)
"Ignore that!" (snappy and aggravated)
"My mind seems stuck in a loop!!??" (amazement at my genius)
"Duhhhh......" (drool from slack brain)
"Was I supposed to ignore something?" (looking for a brain cell to light up)
"I'm in pain" (see above)
"Ignore that!" (see above) ....ad infinitum [you get the picture]
It's like trying to bat a mosquito dive bombing your ear.  You wave at it and smack at it and its annoying as all get out but you just can't get rid of the little monster.  When I get stuck like this it becomes impossible to reboot my brain, so keeping it occupied (I have discovered scholar.google.com and http://www.quertle.com/ WooHoo!) keeps it moving forward.

My choice of research this weekend was my nervous system.  Dr. Welby thought it was very interesting that my GI specialist at Barnes/Wash U in St. Louis (Dr. Bellyfixer) was certain that my motility and other digestive issues were from nerve damage that controls the bowels.  In researching the innervation of this region of my body I found that is controlled by the autonomic nervous system, and the part that controls the bowels comes from the lumbosacral region of the spine - the part that the radiation treatment seems to have harmed.

The autonomic nervous system is made up of two to three different systems (there seems to be some disagreement about the third - whether it is a separate element or not).  The sympathetic nervous system governs intestinal peristalsis and some bladder functions.  The parasympathetic nervous system controls the sphincters, incontinence issues and non-specific abdominal pain that may be felt in the skin. The enteric nervous system works with gut motility and some reflexive digestive processes.

These systems work with each to complete the digestive process and to signal the body when things are right and when things are wrong with digestion and organs in the pelvic area.  If one gets out of synch they are all in danger of malfunctioning.  It is sort of a "push me pull me" type of relationship so if two sides decide to push instead of one push and one pull you get all sorts of problems happening. Sorta like The Belly and me!

The major nerve signalling chemical used by the autonomic systems is acetycholine.  One of the drugs which works the best for my motility problems is an older drug, Pamine (methscoplamine bromide) prescribed by Dr. Bellyfixer. One of the Dr. Dunces sneered at me in a condescending manner when I told him that this was really the only medication that had helped me so far.  I guess Dr. Bellyfixer (a department head working at one of the top ranked hospitals in the country) knew his chemistry and neural signallers better than all the local Dr. Dunces put together.  Pamine is an anticholinergic, a medication specifically formulated to inhibit acetycholine in the nervous system so I guess it stops some of the over signalling that is going on in my bowels!  Now I know why it works, and why it was prescribed. 

The autonomic system is considered part of the peripheral nervous system which is basically any nerve in your body that doesn't come directly from the brain or spine.  The other part of the peripheral nervous system is the somatic nervous system, which deals with touch, pain and movement.  The somatic part doesn't work very well for me either, but I think that type of damage is easier to diagnose due to weakness and changes in sensation and pain.

Enough nervous system anatomy for today/tonight.  My pain has decided to calm down for awhile so I'm going to try to go to sleep while I can!  WooHoo!!!  Trying to go without medication so I can jump to work tomorrow early!

Saturday, November 27, 2010

My Cup O' Pain

It Runneth Over

We are all born with an innate ability to withstand pain.  Some of us are born with more "capacity" to withstand pain than others.  Chronic pain effects us differently than acute pain.

The question I ask myself, what "switches" me over from having pain I can tolerate and work with and deal with to having pain that makes me shake, get "shockey", unable to think?   It literally can feel like one minute I am dealing with pain just fine and the next I am past my limit.  I don't know how to plan for this, how to prevent it, or when in the midst of it I sometimes can't even think of anything but the pain.

I have decided that I have a cup, like a teacup, that holds my pain. 

If everything is going fine, I don't overdo anything, The Headache behaves, The Legs are OK, The Belly rumbles onward, I am able to sleep and rest, the pain drips into the teacup but then gets emptied every day, and I start off the next day with an empty cup ready to fill it up again.

If something happens, and I have acute pain (like The Headache) instead of dripping pain into my cup, it POURS into the cup in great gushes.  If I medicate, or get my stimulator set just right, or am able to sleep (or maybe combinations of all three) the gushing stops and the teacup holds at that level, and if I'm lucky empties.   If I can't stop the gushing, the teacup overflows and I am at the point I can't walk, talk, or think from pain.  If the teacup just holds and doesn't empty, I am still at risk of overflowing it, since now I am working with a cup that is half full, three quarters full, or to the brim instead of the nice empty cup.

If the cup doesn't get emptied, and the pain just drips onward with my normal levels of pain (instead of gushing full with acute pain) I come to a tipping point.  One more drop, and it is overfull.  Being overfull, my body doesn't seem to care if the extra drop of pain is from a too tight blood pressure cuff, a needle stick trying to start an IV, or an extra bright light boring into my brain - it just starts the same shaking, not able to think, freezing cold reaction it does when I have great gushing extreme levels of pain.  The only difference seems to be that I am not as agitated as I am when the pain comes too quickly and overflows my cup too fast.  Perhaps my body and mind has had more time to adjust?  Or the physical shock is not as great? Just not sure.

My PCP tells me that allowing my pain to stay uncontrolled puts me at risk for "overflowing my cup o' pain".  Not enough sleep puts me at risk.  Doing too much without controlling the pain puts me at risk.  He gives me plenty of medication so I CAN control my pain. He worries that I WON'T control my pain.

Here is my dilemma:  I am not afraid of addiction, but I fear not being able to "function" on the pain medication.  I am sleepy.  I don't think right.  I have poor impulse control. I have poor balance.  My nausea gets worse.  I won't drive because of these side effects.  I find it difficult to be productive because of these side effects.  I like being productive.  What to do? 

I can't function at all when my cup o' pain overflows, and I can't function well with the pain medication.  Logically I know the answer.  It is the same answer my PCP tells me.  Not functioning at all is not acceptable.  Not functioning well is not optimal, but it is better than not functioning at all.  I probably am not functioning with the pain as well as I imagine, because the "drip drip drip" into the teacup does take a toll.

I hate having to change, having to admit I am not in control, having to deal with this.  I'm a big wuss....and a complainer....and a griper.  Determining this weekend that next year will not be the same as this year.  I will take a hard look at what works, and what gains the most ability verses the least disability, and I will make permanent changes.  I am positive that I will continue to endure and there is either going to be a way to upgrade my teacup o' pain to a bucket, or a way to keep that cup empty more often.

Here are some links to more information on Chronic Pain, Chronic Pain Syndromes, and Pain Management (I hope none of them are wackydoodles - I visited all the websites but didn't research their bonafides):

American Chronic Pain Association
International Association for the Study of Pain
Alliance of State Pain Initiatives
American Fibromyalgia Syndrome Association
American Headache Society
American Pain Foundation
Chronic Pain Association of Canada
The Endometriosis Association
The Facial Pain Association
International Pelvic Pain Association
National Headache Foundation
National Pain Foundation
The Reflex Sympathetic Dystrophy Association

Next year will be better, tomorrow will be better - there is always tomorrow!  (PS I am thinking of capitalizing on the poor impulse control while on pain medication - what kind of whacky behavior can I just have fun doing and THEN blame on the medication?  Hmmmmmmm....)