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.

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!!

Malfunctioning Legs

Need That Bongo Sound Effect

I've had a hard time this week with pain especially leg pain.  Finally the other night I decided that I was being stupid so took some of the medication I carry with me just because of this problem.  Instead of impairing my ability to think, I was able to think of something besides pain. I think my concentration was improved rather hindered.

I have been standing a great deal the last few days, and walking back and forth between two buildings at the client we are working with which is a couple of blocks.  Doesn't sound like a lot of effort, but my legs have been getting weaker each day.  I would hope that using the durn pegs more would make them stronger, but they are just not cooperating.

Today I stood up from sitting in a chair and working on a computer for about 30 minutes and my legs wouldn't move.  I couldn't pick my feet up.  I couldn't scoot them forward.  My body had forward momentum but the legs and feet were glued to the floor where I stood up.  I don't have good sensation in my feet but this was different.  It was like sending a message to the feet - move Move MOVE - and they weren't paying attention.  The legs weren't asleep (as from a pinched nerve) they just weren't obeying.

I caught myself on the desk where I stood since I was my generally hell bent on getting somewhere self and had started moving my whole body forward, not realizing my legs were nailed to the ground.  I felt like I was in a cartoon where the feet move in a blur but you don't go anywhere.  I thought if I only had that bongo sound effect I could just skedaddle and get going!!!  Pyoooooiiing!!

I managed to unglue my feet by actually sliding my legs forward using my thigh muscles and lifted my feet and tried to stomp them into submission the same way.  I sure was glad I had BLING with me!  I have been using BLING daily but even BLING was not enough motivating force today.  I have had to kind of lift my legs tonight and shuffle along but I'm able to ambulate.

Tonight I am sitting around the hotel room hoping the legs will revive.  They are hurting, tingling, very weak and pretty numb.  The huge hives that were on them last weekend have shrunk to normal hive size, so I don't think this is due to angioedema.  Not sure what to do if The Legs just quit on me.  I wonder if this is what Dr. SassyPants meant by saying he didn't know if I could make it through this fall traveling.  Am halfway afraid to take Soma tonight in case that is what stopped me in place like a mouse in a glue trap, but also know if I don't take it I won't be able to walk because of the pain. 

I guess if I get stuck again, I can get myself a fancy slide along walker - one of my bloggie friends has a fancy rollerator walker that I am quite jealous of.  There is a bright side to everything and the fact that there are fancy rollerator walkers I could shop for is definitely a bright side.  I wonder if they make walkers out of carved aluminum like BLING??  I would like my chariot and my pogo gogo stick to match.  Maybe I can get mini-spinners for the wheels!!! 

Pelvic Pain Blues

Why Did I Leave BLING Behind?

My day of fun yesterday has turned into a day of pain today.  I was stupid and went walking without my cane BLING.  I thought it wouldn't hurt to just amble around without BLING's assistance.  WRONG.

Have been suffering all day and part of last night from pelvic pain.  This is a pain I can't escape and I can't make better by sitting or standing or any position.  Trying very hard not to take any pain medication as I have to work tomorrow.  We are getting way too close to this installation for me to go down now.

Working from home today most of the day.  I had emailed my files to use for some data conversion fixes last Friday and pulled them in this morning.  Takes a bit of massaging of the data for me to "create" the records that need to be there.  Then I have to load the data and verify the data. I also tried to catch  up on documentation of "incidents" that are customer related.  It's been hard to do because sitting is not pleasant at the moment.

I am a bit concerned because when I unloaded the data in the table there were spaces after data in fields that should not have spaces, and my upload definitely did not have spaces.  That means either a user added the spaces which should not have been possible or the program itself is putting in the spaces or we converted spaces.  AUGH!  I see tedium ahead figuring out what happened when.

My funometer must have filled up more than I realized yesterday as I am feeling fairly cheerful today, even with the unbearable pelvic pain issues.  I guess my doctor wasn't kidding when he said I needed to use my cane all the time.  Duh on me.  I was sorta afraid I would be like a bull in a china closet with slinging BLING around bunches of antique dishes.  That sort of accident could be costly!

Going to bed soon.  Hoping my body will behave itself tonight.  Today was not a fun day at all.  Of course, since my pain resevoir for pelvic pain is running over, all other parts of the body have been filling up their pain tanks too. Tommorrow will be much better I am positive! 

Me and My BLING

Carrying a Cane can be Dangerous for Others

Per popular request (well, truthfully for my blog, popular means a couple of comments!) I am showcasing my cane BLING tonight.

I started using a cane last spring when I started having foot drop and increasing disability from my plexopathy issues.  At first I bought the basic black aluminum cane, guaranteed to go with most of my work outfits and my sensible flat heeled work shoes.

Sensible shoes are sooooo boring. I had to give up wearing heels about 3 years ago because of the plexopathy.  Somehow the heels made me feel like a grownup in a grownup world.  I am a short little hobbit lady so anything that makes me feel grown up is a plus, because even at 51 I don't feel like an adult most days!

My coworkers decided that a plain black cane was too blah, and threatened to bedazzle the one I had.  I had nightmares of shiny rhinestones and feather boas hot glued to my cane.  I decided to circumvent their nefarious plans by buying the blingiest cane I could find.  I live in a fairly small town, so I don't have a lot of choice of shopping venues but I was pleased to find my cane of BLING at the local pharmacy.

BLING is a basic black cane (again this goes with my business attire and my sensible shoes) but it has silver shiney "scales" carved into the aluminum that catch the light and make it sparkle.  In traveling I have compared canes with fellow cane users, and none have seen the same model I have.   Many have admired it because it is like jewelry on a stick, but I can't tell them where to buy one. I have looked on EBay and online medical supply and cane suppliers and I can't find any that appear to be the same (I sorta would have liked to buy a couple more in different colors).   I am sure there is supplier out there somewhere, after all my pharmacy ordered it from someplace, however once I bought BLING they have not replaced that model. 

Carrying BLING makes me jolly about having to carry a cane and wear sensible boring shoes.  I am dangerous traveling with BLING because I forget I am holding it and wave my arms around with BLING attached.  Sometimes this is really handy, because people keep their distance, and sometimes it is kind of scary especially in airplanes:  BLING really starts hitting people in their heads and poking them on their shoulders and stomachs as I try to stow away carry on luggage.  I can't handle BLING very well on those moving pathways at airports either - I get it stuck while I am whirling away from it or I can't hold onto the handrail because BLING's handle is in my hand.  Shopping with BLING is a challenge because BLING gets stuck in the merchandise and trys to knock stuff off in the floor.

The Headache is not happy today, and The Hives starting popping out again yesterday because I've tapered off the prednisone.  My pancreas enzyme lipase runneth over normal - could have gone to the hospital this week, but I am determined to get better without being stuck in a hospital bed.  I have plans for once -   I am going to meet an old friend who is volunteering at the local MS bikeathon in town. I am sure The Headache and The Belly and The Hives and The Legs are conspiring against me having a nice relaxing visit.  Fie on you  - you rebellious body!  I will have fun regardless...and I will carry BLING with me.  All onlookers beware!