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.

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.

EMG Tomorrow

Dr. Welby At The Helm

I have an Electromyogram (EMG) of my legs scheduled at 10 AM tomorrow and Dr. Dense is NOT the neurologist.  Instead I am getting Marcus Welby, MD,  the kindly reassuring older neurologist everyone in town respects and loves, the one that never takes new patients because his roster is always full.  I wasn't expecting anything until next January or February at the pace they do things at the local neuro clinic.  My PCP must've motivated somebody - I'm totally surprised.  WooHoo!!

I didn't take any pain meds today, and won't tonight or tomorrow.  I am afraid of skewing the EMG results with medication, so I decided to hurt instead.  This certainly has been a week of doctor appointments.

I saw Dr. Calm, the immunologist, today.  He is running tests for mammalian meat allergy and the genetic mutations (c-kit mutations?) for mastocytosis.  Apparently if I have mammalian meat allergy I won't be able to eat beef or pork because of some kind of enzyme in the protein.  Well, I would rather have that than mastocytosis but I really don't want to have either, so hoping the tests come back negative!!!  No changes in the cyclosporine dosage.  I am not supposed to eat any beef or pork until I hear back from the tests.  We were going to have ham for Thanksgiving, so I think I am going to risk it and take more benedryl that day to counteract the possible mammalian meat enzyme allergy. 

Had to arrive late at work due to Dr. Calm's appointment, then leave early in the afternoon because they messed up my blood samples for the tests and I had to go and get poked again.  Apparently they took "serum" samples and they needed whole blood. Wonder what the difference is, because it comes out of my veins the same.

Very on edge this evening, suspect it is because The Legs are misbehaving. The pain will get better or it won't.  I just am having trouble sitting still - have dancing legs!  Very hard to concentrate, and little things are getting on my nerves.  I will practice my breathing this evening and my biofeedback and try to concentrate on something else!

Revolt of The Legs

Living in Quandary

Have I mentioned lately I love my job?  Even with the travel, even with the pain, even with the fatigue I love doing what I do.  It's hard to define why I love it because what I do is not set in stone, it varies from day to day, sometimes it's not easy or pleasant, and physically even though it is a desk job it is becoming difficult to do.  I enjoy everyone I work with.  My bosses are great and supportive - plus they know what they are doing and are passionate about what they do.  It's intellectually stimulating and mentally challenging. I work with healthcare administration and healthcare finance which is a field I chose to work in approximately 20 years ago. I get to work with small hospitals all across the United States many in rural areas, and advocating for rural healthcare is another passion of mine.

My sister said when I got this job over eight years ago that I had found my dream job.  She was right!  I campaigned for this job.  I could tell from my first interview with them that not only did I want to work there I HAD to work there.  It was a big change for me.  I went from mega corp to tiny corp; from tons of direct reports and fiscal responsibilities to no direct reports and no fiscal responsibilities.  I went from exasperated and aggravated to excited and engaged.

I am sad tonight, not about my job or my work, but about whether I am going to be able to continue with my job, my work.  My body is not recovering well from my last trip.  I fear increasing disability, increasing medication, increasing pain.  I am wondering, am I now really disabled?  Is there someway to absolutely know?  I have great amounts of will power and have been using it to keep going but now even that may not be enough.

I experienced a great deal of pain in Michigan, and medicated and kept going even when I shouldn't have.  Even getting in and out of cars was becomming difficult. Coming back, in addition to the adventure of the flying puke fest, I experienced a great deal of difficulty walking and standing.  Flying is always an issue because of the walking necessary, and the standing necessary, and getting on and off planes while hiking a PC and a carryon full of medication.

Last weekend was frightening as the leg malfunctioning continued to evolve.  Saturday walking was very difficult.  I felt like I was shuffling along or using my thigh muscles to scooch the legs where they needed to go.  Saturday night the pain was pretty bad.  Sunday morning I woke up with big round numb areas in the bottoms of my feet and my legs tingled all the way up to my hips.  Before Sunday, the tingling only reached about six inches above my knees.  I felt very tired.

It is now difficult to get up from a couch or a chair.  I feel my legs are very weak.  The pain increases and decreases throughout the day but I ended up going home early today because of it.  Driving is hard, sitting is hurtful, and walking is an ordeal.  My incontinence issues started increasing almost two weeks ago and have settled into a new kind of normal that is worse than it was before Michigan.

I saw my PCP today and we discussed these issues.  I could not move my left leg, my left knee, my left ankle, my left foot against resistance.  I could barely move my right leg against resistance.  My reflexes have been gone almost a year now, and I think the damage decided to take another leap forward (or perhaps that would be a leap backward??).  I am much worse than I was a couple of months ago.

My PCP wants me to get EMG testing, even though I told him that Dr. Sassypants said there really wasn't anything anyone could do. I don't have structural issues that can be fixed. He also wants me to go back to the local neurology group which I really don't want to do.  I have issues with that practice, and he really doesn't have anyone else he can refer me to.  He knows why I don't want to go back there but felt like this is urgent enough it wouldn't pay to try to get established somewhere else out of the area.

When The Headache was in its full undiagnosed horror I had a neurologist, Dr. Dense, in that group that not only did not listen to ME, but also ignored the advice of the neurology group she sent me to in St. Louis.  She refused to prescribe the only medication that works for The Headache which they had prescribed in St. Louis for a few weeks until I could get back to her. After a month without any pain relief she told me she would only prescribe the medication that worked (indomethacin - NOT a narcotic)  if I signed a paper saying I would move my care to another practice! Totally unethical. I'm not thrilled at the prospect of seeing her again.  My PCP says he will speak to the head of that department but I don't think I will have any luck getting reassigned to a different neuro.  sigh. I have absolutely no confidence that Dr. Dense will be able to help me at all.  A waste of time, money and effort that I can ill afford.

Per my PCP, I am to stay off my legs as much as needed to keep the pain at bay.  Unfortunately that would preclude walking at all.  I am to let them know if it gets any worse.  I was told that I may need a fancy schmancy rollerator walker soon, and may have to retire BLING.  I fear even that would be a stop gap measure until I am forced to full out wheelchair time.

My PCP has modern views on pain management, and wants me to keep him in the loop if I need stronger narcotics, and told me to keep taking the Soma also.  With so many people having issues getting adequate medication for pain relief, I am very grateful that my PCP understands and is willing to prescribe.  I am very sparing in my use of pain medication (although I did take some tonight) and am still working on prescriptions I filled last spring.  He would like me to take more and do it on a schedule in order to stabilize the pain, but right now I am willing to be in some pain in order to function at a higher level.

I have an appointment with Dr. Calm to discuss the cyclosporine and The Hives tomorrow.  I took blood tests for that today.  All these appointments are crammed together because I had to reschedule while in Michigan because we extended our stay.  Already tired of seeing docs!

Going to bed soon, as my pain meds and my antihistimines are making me sleepy.  Hoping that maybe The Legs will be better by next week.  Sigh again. This way I can delay making any decisions I don't want to!!

Hey, at least the cankles are better!!!  And if I have to get a rollerrator walker, I'm gonna trick it out with spinners, rear view mirrors, and a special paint job - and maybe curb feelers and some fuzzy dice, and one of those horns that plays songs!!