Thursday, January 6, 2011

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.


  1. Dr. Kildare deserves his POW!
    What these drs. don't understand is that severe pain after such an extended time breeds a unique situation. I don't know that depression is the right word. Pissed really is better. You are Pissed that you hurt. You are pissed about what you are missing out on. You are pissed that things are never going to be what they were. I suffer from depression too. They're very different things. I don't know why doctors can't understand that.
    You know , it's only your life. You have a right to be pissed.
    Don't worry. House solves all his cases!

  2. Kristin: Even I, the perrenial glass half full optimist, get depressed at times dealing with all of my health issues, and the financial issues stemming from missing work and too many medical bills, and the isolation you sometimes find yourself trapped in.

    But that truly is different from being mad because you got exactly what you expected - no help, just another bill, and more weeks in pain and more weeks disabled by pain.

    Thanks for the pep talk!!! I needed one today. House doesn't mind if you get pissed either. I think it makes his day.

  3. I do not understand why it is so difficult for people (especially physicians) to understand that we, chronic pain people, are NOT freaking depressed...we are hurting, discouraged, defeated, frustrated...PISSED! Which, yes, may bring on moments of anxiety and depression...but a big diffrence between being clinically depressed!!! Ahhhhh!

  4. Jessica: Cynically, I think it is easier for them to dismiss or under treat the pain if we are depressed, since depression supposedly magnifies pain. I agree with you, I think chronic pain magnifies depression.

  5. But I do think we also need to realize after a while the depression we feel because of the pain can be dealt with medically as well. We don't have to suffer in silence. It is my psychiatrist's job to know when I can't handle anymore and then find a way to help me cope. It's different than chemical imbalance depression but no less serious and it shouldn't be ignored. He has also been very helpful in helping me take the medical leave I so desperately needed when physical medicine left me with few options.

  6. Glad Dr. Kildare connected the dots finally. Duh is right. I cannot believe he was so hung up on having you believe why you were angry. I was waiting for you to add murder to your list (after killing him) because of his insistence to being depressed because you are angry. So sorry for the ordeal or whatever the hell it was Winny. ((((Winny))))

  7. Kristin: Depression whether situational or chemical imbalance is a serious issue. Kudos to you for keeping your priorities right and finding the right professional to help!

    JBR: :) I think he thought if he repeated it enough times I would agree. That was his modus operandi the last time I was there.

  8. Few things are as frustrating as a doctor who will not listen to his patients. We need our doctors but they need to understand that we have insights and knowledge about ourselves that they don't. I hope you get what you need from one of them.

  9. Migrainista: I don't think docs undertand either that we have this whole dialog running through our heads all the time they are talking based on past experience. I guess I'm glad they are not mind readers or they would definitely know I'm pissed!!!

    Right now, I am just asking for a definite diagnosis even if it is "Idiopathic Neuropathy" - they just saying what I don't have - not what I do have. I would love it NOT to be due to radiation, but with my luck I would end up with some obscure thing that is even worse.

  10. I am SO sorry for you - I have been through similar circumstances and lucky now I have a good team behind me. I wish I could fix it for you or send you my doctors.

    And let me say that I get PISSED a lot - and it is NOT depression - per my therapist I have every right to feel that way. I am not depressed - I AM SICK OF BEING IN PAIN but that's different because anyone would be.


    I too am a very direct person and that's not wrong or a bad trait - it's awesome - you are standing up for yourself. Or others, or whatever it is.

    Best of luck!


  11. Thanks Elizabth. I think we need an organization called PPA - Pissed Patients of America!

    I have great doctors who are NOT neurologists. I think it is something to do with neuros, maybe I just come with attitude to begin with, but frankly - its not my problem its THEIRS! They can deal with it or not.

  12. I was actually sent a survey about my experience with my Dr. Wonderful. Believe me, they are getting an earful. It was quite therapeutic! I should have sent you a blank copy to fill out. It would have made you feel better I swear!

  13. Kristin: Hope he gets some feedback from management! And I hope he pays attention to it.

    I have no trouble complaining in person, but see - they just think I'm depressed! I guess that's easier than thinking some one is justifiably angry with your actions?

    I'll let you know when the PPA has its convention and you and Elisabeth can be key note speakers!!

  14. I'll be there!
    In my case I'm happy about the survey. If I'd have chewed him a new one he could have blown that off privately. This survey gets sent to corporate in Florida. It's anything but private :)
    But I should take a lesson from you and just let him know how I feel next time....oh wait... there isn't a next time :) (God willing...I'll find someone else 10 years from now!)

  15. Hope it hits him where it hurts - the pocketbook!!