The Birth of an *e*-Patient

You never know when those moments are going to happen.  As usual, when you least expect it. I receive many questions through my website, but even after I comment,very few come back to continue the discussion.  Today was quite different… and it allowed me to sit back and smile and know that another e patient was born today…. and I  further knew that every moment I spend online  is worth it.

You never know when those moments are going to happen.  As usual, when you least expect it. I receive many questions through my website, but even after I comment,very few come back to continue the discussion.  Today was quite different… and it allowed me to sit back and smile and know that another e patient was born today…. and I  further knew that every moment I spend online  is worth it.

Shawna’s first note came to my site late last week: You can follow the threaded comments here.

I followed through with a series of suggestions:

Shawna came back Her response should be read carefully– particularly near the end

…again, thk u doctor luks…your responding renews my hope a bit b/c i have not been able to get any of my doc’s to listen to me. they are very dismissive, and the “normal” MRI report finding has not helped.

once i experienced the callousness of the OS, who ordered the MRI, i decided i would not be returning after i’d had my MRI, and instead, opted to return to my GP provider (a physician’s asst.), hoping she would be more concerned than he appeared to be, and willing to send me to another OS, given my symptoms haven’t changed. however, i did not find that to be the case. she explained, considering the “normal” MRI finding, she didn’t feel there was any other cause known to her (that hadn’t already been considered by the MRI) that might be responsible for the pain i’m in. nor, was she willing to take a very pro-active approach of trying find out either, i felt.

the most i got out of her was, she conceded to have my case reviewed by her supervising doctor, but she was very resistant even to helping me, in the meantime, to find ways to deal with pain i’m in, which i found equally frustrating, as not knowing what’s causing the pain. i assumed there could be no harm in providing me, at the least, with the things i know are available to doctor’s to help ease a patient’s discomfort, but i had every one of my requests shot down, as if i had no right to ask. when i asked to have a basic brace to help support me (on a temporary basis) b/c i am not able to walk w/o limping and using a cane, she told me they were only for ligament injuries; when i asked if she could provide medication (not the vicodin i had been given at first), but rather some other pain med that might work in tandem perhaps with the anti-inflammatory meds i already had, she refused-stating those were enough; when i even asked could i receive a cortisone shot(s) in my knee to help numb it (the way I had for my wrist previously), she stated they were only for a situation like my wrist tendonitis; and finally, when i asked if i were a candidate for PT, perhaps they could help relieve the pain, she said, only as a last option-that she needed to be “conservative” in her approach. (unbelievable)

so, saying ALL that to say (my apologies for the length), i appreciate your suggestions that MRI’s are not the only diagnostic tool available, and that another pair of eyes might yield a different result-it gives me something to take to my next appt at the GP’s, with the senior doctor on staff-before i have to completely give up, and just resign myself to live with this pain. i only hope this time, i’m met with more than resistance, b/c you’re right, this definitely does affect the quality of my life.

i just don’t know what rights i have, if any, b/c i’m afraid i don’t belong to the best HMO, and i fear that is what is, in part, behind much of the low quality of care i’ve received so far. 

at any rate, i appreciate your taking time out to answer me.

Next… I sent out a quick tweet to my favorite patient advocate and favorite  e-patient  🙂

Trisha repsonded:

Then it happened… An e-Patient was born !:

Many of us, over and over have spoken and written about how we feel we are stuck in a #hcsm echo chamber and we frequently question whether or not further engagement at this level is worth it.  Well — Shawna, and all the other Shawna’s out there… let me tell you this.  YOU are the reason why I am active online and have such a dense digital footprint (compared to others in healthcare).  And because of our little interaction today… I’m going to continue to remain active in the echo-chamber, because every now and then someone new who needs our assistance knocks on the door.

Welcome!!