A post from Stevewithpsp

[Kevin_1]

Steve is having IT problems and has asked me to post this for him:

Stevewith PSP healthunlocked.com/user/Ste...

Hello friends. It has been some time since I posted here. A lot has been going on on my life, but that's no excuse. As things stand since my last post I have been married to a lovely Aussie woman named Lisha, moved out of an assisted living facility, and trying to live an independent lifestyle. There are two things I would like to address.

The first is the emotional volatility that PAP causes. I am talking about my tendency to speak my mind at some inappropriate times. I speak the truth; this disease makes you honest. Still, most people can't handle that. Has anyone else here struggled with this? My support folks have code words that they repeat to shut me up. However, given my short term memory problems, I forget what they are! Any suggestions would be appreciated. I just don't know how to lie for the sake of political correctness anymore.

The second issue I wish to address is most pertinent to my American brethren. This is the issue of palliative care. I have, in addition to PSP, multiple diagnoses of Degenerative Joint Disease , Degenerative Disc Disease , and Failed Back Syndrome. I have had four discs removed from my lumbar and cervical spines, with two others ruptured and symptomatic. My neurologists tell me that further surgery is not medically sound. After twelve procedures, I concur. This in turn, leads to the issue of palliative care. It is seemingly impossible to get sustained pain relief in America today. The "opoid crisis" which has been manufactured by politicians, the media, and interventional physicians means that those Americans who suffer intractable chronic pain which leaves them unable to function cannot get access to opoids. In my home state of Louisiana, new legislation which recently went into effect, limit primary care physicians to prescribing only a ten day supply of a CDS. This means you have to see your physician every ten days. There are four exceptions to this limitation. I meet three of the four. Yet I find myself unable to get the medications that work. One of my doctors actually resigned a professorship at LSU in New Orleans and moved to Canada! So I ask you, are there other states without these stupid and misguided limitations? I can not fight the government here any longer....

StevewithPSP healthunlocked.com/user/Ste...

[Hidden]

I was just at my doctor’s office to get a refill on diazepam. He told me I wasn’t on the Pennsylvania state list. I am not sure what list he is talking about. I assume it is potential drug abusers. We do have a nanny state when it comes to pain management. God forbid anyone should not be in pain. I would guess no elected official ever goes without what ever drug they want.

The other thing is doctors hate the word pain. Tell them you are in pain and they will ask about the level of your “discomfort”. It’s not “discomfort” it’s pain.

[Stevewithpsp in reply to Hidden]

I was in pain management for almost 21 years. Now, because the government intimidates doctors, I am told "go away and die, we don't care." A harsh realization at this point in my life...

[daddyt]

Good to hear from you. And yes, I know all too well about speaking my mind and often at inappropriate times. The bruises on my ribs are not from falls... more like my wife's elbow (:

[Stevewithpsp in reply to daddyt]

I'm glad I am not alone in this. It's pretty embarrassing. PAP makes you pretty candid. Good luck

[daddyt in reply to Stevewithpsp]

Oh yah.