Monday, February 16, 2009

An anonymous coward is screwing with BR's treatment

We got a call from BR's pain management doctor this morning. Another unusual occurrence, since we usually work with his PA. Seems that someone has made an anonymous complaint to the state medical board regarding BR's treatment, and specifically the medications he is being prescribed. Because the complaint was anonymous, one of the possibilities in the doctors' minds is that we reported them. So it would seem that all BR's doctors have gone into CYA mode.

In my last post, I spoke of BR's pharmaceutical house of cards that maintains his quality of life. We would never do anything to put that treatment in jeopardy, but it seems someone else would. As a precaution, I've gone back and sanitized previous posts of doctors names. I'd like to continue discussing his treatment, but I'm having serious reservations.

If the complaint came from someone reading this blog, your actions have turned what was a cooperative doctor-patient relationship into one filled with suspicion. You have complicated what was already an extremely difficult treatment situation. I will speak of you no more.

12 comments:

Anonymous said...

Oh my goodness!!!!what next will happen???I am so sorry this is happening.I have never heard of this before. Shame on ??????Love you, D

herrad said...

Hi Steve Hi BoRobert,

What a dreadful situation how horrible for you both.

Take care of each other.

Lots of love to you both.
Herrad

herrad said...

Hi Steve,

Sorry to trouble you about this but can you let me know how you make a active link so people do not have to copy and pat url's in to search engines.

Thanks for your help.
Love,
Herrad

LL said...

I am thinking of the old saying, everything done in the dark comes to the light. I just can't help reading your blog and wondering if we are seeing the same doctors... I just have not been pleased. Because of that I have left my husbands medical care to him, so that my feelings do not interfere with his treatments but I know know to get involved.

I have been reading your blog and would really like to talk with you personally. Maybe we could support each other. My email is ll.stroud@gmail.com

Thank you for finding the strength to write.

steve said...

Hi Herrad -

This page should get you started adding links to your posts:

How do I make a link to another webpage?


BR and I really appreciate your openness in discussing your struggles and triumphs. Once we get this sorted out, we hope to go back to doing the same.

steve said...

Thanks for stopping by, LL. As frustrating as the process has been, I find being BR's medical advocate has given me a way to use my engineering training to contribute to his care.

It's a funny thing about doctors. The better they are, the larger their practice. The larger the practice, the less time they have for each patient. And less one-on-one time with patients leads to more "one size fits all" treatment plans.

In the end, it's all one big clinical trial with BR as the lone subject. When the canned treatments aren't working, the advocate needs to stand up and request informed creativity. We were finally getting there with the neuro and pain doctor, and this had to happen. I just hope all the CYA doesn't stifle the creativity.

kmilyun said...

I found your blog via herrad. I have been reading through it the past few days and have it on my news reader and added to my blog roll today.

All I can say to this anonymous coward is unprintable . ...

Hugs to both of you and may a big bucket of you know what land on someones head cause what they did stinks.

LISA EMRICH said...

Steve and BobRobert,

I'm so sorry that someone might be messing with your only means of pain relief and treatment. That's not right and it's nobody else's business.

You are wise to remove specific doctors' names and such. But, still, sorry that now you may feel like you can't speak freely.

LISA EMRICH said...

LL,

I'm so glad to see that you have reached out to Steve and BobRobert. Perhaps you will find some mutual support.

Kim said...

Wow, that seems completely random and malicious. Could this have been from someone who hasn't seen you guys in a while who might think the meds are responsible for the rapid disease progression? Could it have been another doctor in the practice? Whatever the reason, I can't help but be infuriated and outraged along with you.

Richie said...

Most of what I was going to write has already been said.
If it is not hard enough keeping control of our lives with this bloody illness to deal with.
Thanks for your openness. You have been a big help to me.
That 'sticky beak' has damaged us all.

herrad said...

Hi Steve,

Thanks for the link info.
Lots of love,
Herrad