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!!!

Winny Vs. Dr. Kildare

Round 3 - I'm Pissed

Had my follow up visit with Dr. Kildare.   Now that he has taken the time to read my medical records, he seems to think I am not a well person. No duh!  His exact words were "You are a very ill person" and my reply was "I realize that", and I don't think I said that in a pleasant tone of voice.

He hem hawed around about small fiber neuropathy and that the test I had done there over a month ago could only detect LARGE fiber neuropathy.  Instead of saying I do not have a problem because the test was negative, as it was implied at my last visit, this time he said well, after close review of my records I do seem to have some sort of problem.  Huh.

Although I have "a problem" he does not know what it is or what caused it, nor does he have a treatment plan, a pain management strategy, or suggestions on possible lifestyle modifications to help me cope.  He then said, well - we are just a small town - we don't have the resources of larger hospitals like Washington University/Barnes Jewish in St. Louis.  "Your case is very complicated, and I'd like you to go see a specialist at Washington University."  Exactly what I told them a month ago - cut to the chase and refer me somewhere else.  I don't think I looked pleased.  After all this was probably a $450 visit to be told I need to see another specialist, wait more time, take more tests because everything I had told them was true and now I needed to have another set of eyes look at my case.  Augh!!!

He then said I seemed angry. Hmmm. I told him he was correct, I was "pissed".  He said this could be a sign of depression.  I said "This isn't a sign of depression. I am PISSED."  He then said depression comes in many forms, and anger was one of them.  I told him, "I am just a very direct person and I am pissed off! That's how people behave where I grew up.  I am tired of going to doctors and not getting any answers and going to more doctors."  He then tried again with the depression ploy and anger being a trait of depression.  I said "This is a personality trait that goes back 52 years.  When I am angry for a reason I let you know why.  This is NOT depression."  Has he never met a type A personality in a woman before??  Get a clue!

He then wanted to talk about my health condition and my mood, which had deteriorated by that point.  I said I preferred not to talk about the impact of my health issues on my daily life. I already knew his solution would have been to refer me to somebody else, and I was getting to the huffy point. I said I needed a plan to keep on working, or to make a decision NOT to keep on working, but nothing, nada, zilch, except send me to yet another doctor. Argh!!

So my "plan" at the moment is to see Dr. Kildare every 6 months for a checkup, for what purpose I do not know.  He told me that there was no cure for what ails me (whatever it may be -  he seemed to think he had a diagnosis hidden back to be confirmed by the Washington University doctor).  Enough said.  Not really interested in contributing to his retirement fund.  Right now I am only jumping through these hoops in the hope I will actually get a "real" diagnosis.  Dr. Kildare has already marked "diabetic radiculopathy" off my diagnosis list - didn't even know I had gotten that one!  He said he would coordinate my treatment with the Washington University specialist.

The plan for the Washington University specialist is for me to get an appointment there (which is probably going to be another month or two) and hand carry the radiology CD's of all of my CT and MRI scans to the appointment.  The doctor there is a specialist in neuromuscular diseases especially autoimmune neuromuscular diseases.  I have not met him yet, but I am calling him Dr. House - since he is going to have all the answers.  I suppose I could have autoimmune neuropathy, I have several different autoimmune problems.  I suspect it will be more money thrown down the rabbit hole never to return.

I am not sure if I have the fortitude left to go on with this charade.  I told Dr. Kildare that I was at the last tiny bit of pain tolerance I had left.  The pain has been difficult enough that I have had to steel myself just to put clothes on my legs and pelvic area.  The neurontin is helping the pain but Dr. Kildare says I won't be able to tolerate a higher dose.  I'm pretty sure that must be true because that was the only treatment level comment I got out of him in an hour.  My blood pressure was still very very elevated today. Maybe they believed me about the pain because of that??  It probably was because I was pissed, rather than the pain!

I'm complaining, but at least Dr. Kildare was not overtly obnoxious like the last time where he tried to sincerely convince me that since the nerve conduction test was negative every thing was just fine.  I did have to cancel my March 2011 appointment and now I have a late June 2011 appointment.  I'm not sure if I am going to bother keeping it.  Maybe I'll be in a better mood tomorrow.

Neurontin Day 8 600 mg at bedtime.

No sleepiness - it is 2:23 AM and I am still wired.  The Headache seems to be trying to make a comeback tonight.  I think the neurontin is aggravating it.  The hives are not happy either, but I don't want to take any benedryl since it is so late already.  I am somewhat dizzy.  Not sure if its the meds, the kidney stones, or the fact that I have not eaten solid food (except for a grapefruit and I don't know if that counts as a solid) in several days.  The nausea is very bad. 

I am off to Michigan in a couple of weeks, and praying that my legs will hold out for one more trip.  I was hoping I would have some different treatment to try before I needed to go back up North.  Big sigh.

I'm going to get my heating pad all warmed up and see if I can get myself off to sleepy land.  Hoping you all have great days the rest of this week.  I was wishing today that I had Spanky McFarland with me to go "Pow Right in the Kisser" and give Dr. Kildare the smackdown.  One more remark about anger and depression and I was ready to give Dr. Kildare a depression on his skull with my cane!  But I am a civilized being and although extremely "pissed" I did not act on my thoughts physically. Besides, I value BLING too much to inflict damage on it.

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.

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.

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.

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.

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!

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!!!

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!!