Wednesday, August 13, 2008

Mental Mutiny

Today was a quiet, uneventful day. I am waiting to hear from Dr. Rhodes' office in TX. (See link on blog page). Hopefully, Mark and I will be heading to see him within the month. I'm open to trying his program. I'm frustrated with the way the "traditional" MS medication makes me feel, it hasn't stopped the exacerbation's this summer and the thought of more steroids EVER is enough to make me physically ill. Of course yesterdays experience with the neurologist didn't help any. Neither did thinking about it all day today. The more I thought about it, the more angry I became. I wonder what the reaction in the Neurologists office would have been if I had waltzed an hour and a half after my scheduled appointment. Would I have been seen? Not bloody likely. To add insult to injury I also had to pay a $15.00 co-payment for my 8 minutes of his time. I figure that my co-pay alone averaged out to just under $2.00 for each minute he spent with me. Add that to what he will bill the insurance company for a "comprehensive visit". Is it any wonder why there is such discontent with the medical system? Even having medical insurance doesn't guarantee you receive the care needed. I tried to tell myself that as long as the man knows what the heck he's doing it doesn't matter that he never allowed me to ask a question and when I tried to, he ignored me. It doesn't matter that he has the bed side manner of a dead frog. Maybe he was just having a bad afternoon. WRONG. It DOES matter. A lot. I'm the PATIENT. I'm in charge of my health care. I have a responsibility to ME to be knowledgeable about my health and the treatment plan. I also have the right to say NO to any test or treatment. That doesn't make me "difficult". I'm the one who has to go through the treatment and tests. Which means that I'm the one who needs the answers to my questions. I need to know WHY. Not because I'm challenging a physicians knowledge, but because I want to know WHY. Why this treatment instead of another. Why this test if it's invasive and won't give you a definite answer? I look to physicians as the experts in their field, but that doesn't mean I follow blindly along without question. I want a physician who LOOKS at ME! Who would recognize me in the parking lot 10 minutes later because he actually made eye contact and had a REAL conversation with me! I want a physician who actually let's me ask a question. Heck, who ASKS me what I think! Imagine that. What nerve I have...yep, I'm a BAD patient. The worst part of yesterday, and the part that irritates me the most: The fact that I actually sat and waited to be seen for an hour and a half. I should have left after the first 30 minutes. I wonder what it is that convinces us to tolerate being treated like that from the very person you are depending on for care and information? Would I have waited in line at the bank that long? At the pharmacy? At the hair salon (OK, maybe at the salon. I have the BEST stylist). Yep, I'm fired up. (Can you tell)? Of course in my mind the visit would never have happened. After 30 minutes I would have very calmly and tactfully explained to the receptionist that I was leaving. I had scheduled my time for the appointment and it was limited. That I would have appreciated a call to reschedule or move my appointment back when the staff realized he was running so far behind. Then, I would have asked for my co-payment back and I would have left. I would have called my PCP from my car and asked for a referral to another neurologist. Ahhhhh mental mutiny!


MS. ME said...

I just found your blog from ActiveMSers... Thanks for putting into words what is going through our heads and hearts!! I saw you're in TX.. Dunno where in TX you are but I'm in the Houston Area - I have THE BEST neurologist and his NP is also amazing!! If you're in that area - Dr. Newmark with Kelsey-Seybold! My last appointment was just supposed to be with his NP (the sensational Susan!) but when she realized I was having an attack - I was with her for about 30 mins discussing the tx options and then she made Dr. Newmark come in with me and I go another 20! with him... and he wasn't even supposed to see me and was still only set for my NP visit! The staff is also wonderful!

Again, thanks for the words to the crazy train of thoughts!!

MS. ME said...

I just found your blog from the ActiveMSers website! Thanks so much for putting into words what goes through my mind and heart - and I'm sure countless others with our shared "blessing". I saw you put TX - if you're the in the Houston area, like me, I have an amazing Neurologist and his NP and rest of the staff as well!!

I just recently went in for my normal 6 month check in with the NP. Turns out I was in a flare-up and didn't know it. When she realized it, after 20-30 mins of discussing it and tx options = she then called the neuro in and I got another 20-30 mins with him... and then it was another 20-30 mins with the other nurses setting up my IV steroids and treatment stuffs... Dr. Newmark with Kelsey-Seybold! He's their MS specialist and I really like him - a lot!

Sorry this turned into such a long comment - just wanted to say thank you again for your words!