Tuesday, December 5, 2006

Don't Want A Formula For Disaster...

     Since I can't sleep anyway these days, I've been sitting awake ruminating on my 15 minute, Stryker Brigade, death-strike, neurological appointment tomorrow (actually now "today")...you know the kind...15 minutes to ask and have answered questions for what feels like decisions to be made for the rest of your life?!?  Rather important questions needing some sophisticated responses from a doctor?

     I'm actually not worried about the "sophistication" of responses by Dr. She Who Will Not Be Named (although I DO worry sometimes about her off-beat sense of humor)...I know she'll have something to say...she ALWAYS does.  But I AM a bit concerned about my abilities right now to formulate appropriate questions AND to understand the responses.  My head is a blur and my concentration is shot...not my usual presentation for such an important appointment.

     I am with it enough to know to take a friend with me to be present for the "answer" portion of the test...I learned this valuable lesson year's ago.  Of course, interestingly enough, even TWO people in the same room hearing the SAME response often "interpret" information differently...but it IS helpful to have someone present I know.  Plus...I need to be schlepped up the hill to the doctor's office also, so said friend meets several purposes for me (thank you, said friend!).

     I know I need to focus some questions on WHY my MS might be so aggressive right now in my life...I know I'd like some answers about prognosis, although I doubt I'll get any...tis the ol' MS crap shoot we all face ultimately.

     I need to clarify what treatment options are available to me currently...there's been mention of Novantrone, pulse IV Solumedrol, drug study FTY720, Cellcept, and perhaps even little voodoo dolls with pins...but I may have made that last option up...I can't remember.  LOL

     I feel a need to have that "serious and frank" patient to doctor talk...the one Dr. SWWNBN and I actually AVOID most of the time because we just can't seem to control our own humor and sarcasm when in the same room together...but THIS time feels way too serious for me.  I'd like her to answer me honestly what SHE would recommend to her own family member who might be in my shoes...bullshit and "hope" aside...WWDSWWNBND?  (Ah, that would be abbreviations for, "What Would Dr. She Who Will Not Be Named Do?)...frankly, right now I'm not all that invested in WWJD...I personally think Jesus would ask a hell of a lot of questions, too! LOL

     Then there's the need to know potential side effects of recommended treatments, and alternatives if chosen treatment FAILS, too (as I seem to be the recent post child for MS treatment failures...I'm seriously NOT proud of this fact...really!).  I've got a LOT to cover in 15 minutes!!! LOL

     Ultimately, I'm very aware this appointment will change little in my life right now, except provide some information I may not have access to without Dr. SWWNBN input...but I'm hoping just hearing it directly from her mouth versus written in an email will help to establish some semblance of order in the chaos of my brain right now...there's a lot "lost" in the world of cyberspace. 

     The "good doctor" and I may joke a lot with each other and mostly communicate via email, but there really IS something to be said for being able to "see" beyond the medical mask of a physician and REALLY feel what they are conveying...concern or crap...it's best to make those kind of judgments in person...

     Wish me luck...


mdmhvonpa said...

Ask the doc if your usual witty responses can be a 'take-home' essay to be delivered in a week.  Yeah, context is everything.

baitulos said...


Will do...good thought.  Actually I'm just not my usual "humorous" self today, so she may REALLY think I'm sick! LOL


pjorpeej said...

Linda, where you're having cognitive difficulties right now it might even be a good idea for you to tape the question and answer portion of your apointment.  

I know you have someone you trust going with you, and I think that's wonderful but, as you've said, two people interpret things differently based on their memory of what was said and the inflection used by the person saying it.  Having it on tape so you could review it as often as needed couldn't hurt...

Hope you get good news and straight answers!

hagartyjj said...

Okay, well this is coming to you a little late...but I found that writing down all my questions and taking notes at my appointment help me to remember (seeing how my memory just isn't what it used to be).  My doctor is also big on taking notes and sends me home with a nice little sheet of instructions...I am sure someone could do the same for you.  Now that I have said this (and your appointment is already over...hopefully you can remember this for your next appointment).  

I do hope that the appointment went well and that you are feeling better (even if that comes only in the emotional sense).  I know just the feeling....after meeing with my neuro last week, it really helped.  I hope having some face time to talk about your options have helped.  MS can really suck sometimes and it seems that you are in the thick of it.  I hope you get some relief really soon.

sonyasuzanne said...

(continued from other post comment section....ughh)

In my perfect world you would be free from this dreadful disease.  

We talk in my house about you like you lived right next door.  Most times I wish that were true...Little Luv could come over and tame that beast of yours, Meha, and Sissy and the 'girls' would come over and amuse you with 'boy tales' that they amuse me with.  Loving hubby would snowblow your driveway (lol) and do maintenance on whatever needs to be fixed.....(scary!!)....and I....I would be there to do what that poem says....brush your hair and stay with you, even after you finally drift off to sleep I will be there watching over you to make sure that you are okay.

My world isn't perfect and most times my dreams don't come true....but these are the things I think about, of you, my friend.

I wish, oh how hard I wish, that things were better.  We are here with you....from far away we are here.  Please know that, even if it doesn't make you feel any better.  

I'm at a loss here Linda. Rarely does that happen to me....not knowing what to say to make things goes away or to ease your pain.  

I need you....we need you....for your wit and sarcasm that makes us laugh, for the advice you give when we seem to not know what else to do...when Loving Hubby does something stupid and you make me see things in a different light.  When Little Luv is struggling with his health issues and you offer up advice and encouragement to help me to keep on keeping on, or like the time I cried to you on the phone and you listened with compassion and love.  What more can I say...I need you, please hang in there, for me and for the rest of us.