I was going to do a follow-up post about my appointment last night. Amy beat me to it. If you all don't mind taking a minute to click a link and read about it there, I'll fill you in on some of my views when you get back... (You may also want to follow her blog because she often has entries from a different perspective)
Amy's Blog
I was privy to some profound outlooks on my disability by my Primary Care doctor. The most profound was that he didn't believe RSDS/CRPS pain was worse than natural child birth or cancer. It's been reported, consistently, by people who have had two of the three, but he doesn't agree with the reported findings. Second, possibly tied with the first statement, was that it 'may be time to seek treatment somewhere else.' This is a service connected disability, and he's the second medical professional to tell me I may want to look into getting treatment outside the VA....
Mind you, that this conversation was taking place while I was on the verge of blacking out from my pain and mildly dribbling urine into my pants. The appointment ended with a prescription for Fentanyl, and the feeling that all the evidence wasn't going to be included in the doctor's notes...
That's a big kick in the chops, because the VA won't award me benefits due to the lack of solid notation by my doctors...
So, I'm home, mildly stoned from the high concentration of narcotic (Fentanyl is more powerful than morphine), and trying to organize my thoughts into some form of attack plan for the rest of my day. God willing, I'll get something done today! ;)
Thank you all for taking the time to read.
You're appreciated,
Kev
Well I am hoping my typed up questions and requests that I gave the doctor will help him to remember to document everything in your chart.
ReplyDeleteAlso, I prayed for the doctor last night. His behavoir was out of character now that I look back on things and he might have been frustrated and having a bad day. No excuse to take it out on you. But I am giving him the benefit of the doubt.
What is sad is that he isn't the first doctor that said we should go elsewhere for treatment. Scary in that we had to get our congressman to get us released from the last VA hospital. Now they are suggesting we go to another one. And it is really sad that the ER doctor at the Milwaukee VA didn't know what to do for you and because of their procedure of having to put requests in notes in their system and can't call the doctors on your case, so he had to call the ER doc at our local hospital to find out what to do. That is crazy that VA doctors are not "on call". They clock out at 4pm and are unreachable after that.
The choir agrees. :p
ReplyDeletehi Kevin,
ReplyDeletei hope you'll excuse my wandering in here. i've been reading your posts (and then went and looked up RSD to find out more)...and one thing that keeps coming up for me is how compartmentalized your care seems to be. I can understand the frustration of having to deal with two different factions (the Pain Clinic and your Primary Care physician)...neither of which seems to know what to do for you.
Forgive me for coming at this from my own perspective - which is veterinary, in origin - but i wonder, do they treat you using a multi-modal approach? it would seem to me that maybe 'just one thing' isn't the answer....and it's what we're taught to consider for our patients. and maybe we're a smidge more empathetic because our patients can't tell us *where* or *what* and we have to pay closer attention.
Pain is, in my humble opinion, by far the most under-diagnosed and under-treated condition -- and i think it's because it's invisible -- does that make sense? maybe that's what makes it hard for doctors to treat it -- they're trained in tangible things...
anyway..again, pardon the intrusion..i just wanted to let you know that you're being heard and you and your family are in my thoughts and prayers.
Women's bodies create a natural opiate that subsides the pain of childbirth - it's a fact. Men's bodies do not have a similar function. However, in the whole scheme of things - childbirth does not go on minute after minute and day after day and month after month making you want to put a bullet in your head just to get some fucking sleep.
ReplyDeleteI agree Jhon. Childbirth is painful, but has a wonderful outcome so you overlook the pain. And the pain isn't constant. I gave birth to Lincoln with no drugs and no epideral. I wanted to experience the whole thing. Figured my mom did it with 7 kids I could do it with my one and only. And I could watch a monitor and see when the contraction and pain was going to end. Kevin never has and end. And I can't even imagine what that would be like. I can see how it would make you feel like putting a bullet to your head just to get some sleep.
ReplyDeleteMy mom suffered severe back pain and said too that she got a better understanding of what Kevin goes through daily. She said it is pretty bad when they did a body scan on her and she prayed they would find something anything on the scan even if it is cancer so you have an answer and an end to the pain. I know that is where Kevin is at and it kills me.
Mel, you're always welcome! I wouldn't have my blogs be public if I didn't want people wandering in ;)
ReplyDeleteI agree with you that my treatment seems to have become very linear. The problem is that they want to know what's having an effect and what isn't. If they load me up with multiple medications, there's no way to tell which is working, if any.
The other issue is that all of the medications used to treat nerve pain are anti-depressants, anti-anxiety, or anti-siezure medications. Many of these you can't combine because they'd cause issues...
With that said, I will attempt to address this with my pain management doctors to see if there are combinations they'd like to try.
I forgot how strong these fentanyl patches are! Kind of glad that they are strong, because I was actually able to get some sleep last night, though it was restless...
i suppose i can (intellectually) understand why they're doing it this way...but for crying out loud they're not cooking a bloody casserole here!! i should think the primary concern is getting your pain under control and THEN fiddle with the ingredients...by eliminating elements to see what effects rather than trying to add one at a time. they're working ass-backwards...imho (of course :P)
ReplyDeleteand of the medications you mentioned...analgesia is often a side-effect, rather than the primary use...other than the narcotics of course.
but hey, what do i know? my patients are cats. LOL. WHICH, i might add, are the hardest domestic species to medicate and HENCE i must be vigilant and observant.
(here i am, ranting on your rant)
in veterinary medicine we are trained to *assume* there is pain not wait until there is evidence....then we work our way back to minimum effective doses.
let your Dr. know, i'd be happy to consult...;)
multi-modal management is a win-win...you could (theoretically) be able to use the Fentanyl at a lower dose and without as much risk IF you were also getting something to complement it...an anti-inflammatory and muscle-relaxant/anti-anxiety (because yes....*knowing* agony is impending will make you anxious, cause muscle tensing and actually make it worse - this, you know)
again..cats...sorry....lol