My Description of RSD/CRPS

I was thinking about how to describe RSD in a way that someone can visualize. Heres what I came up with:

There's a dragon living in my arm. Its scales are made up of broken jagged glass and razor blades. Sometimes, the dragon is quiet, only moving restlessly in its sleep, breathing its steam breath. Even just by being present, the scales dig and rip at me...the restless dreaming is the best I can ever hope for. Then there are the other times, when its active, twisting and turning, its tail wrapping around my wrist or shoulder or elbow, and then dragging its tail away. It breathes fire everywhere, and it feels like every where its scales and claws are, my arm is being torn, ripped. This is my 'normal'.

Then there are the really terrible times. The dragon is angry about being trapped in my arm and wants out. It writhes in fury, clawing, biting, ripping and tearing, while trying to set fire to burn its way out.

These sensations are so real that I look at my arm, expecting to see the jagged glass trying to push through my skin.

Thats the most visual way I can think of to describe what living with RSD is like.

Heard From The Hag

Heard from my Workers Compensation case manager, aka 'The Hag'.

Basically, the IME (Independent Medical Exam) said the exam was incomplete or some crud. Can't even remember the term she used now. Basically, because he chose not to do the full exam because it was causing me pain, he didn't have enough info to render any decisions.

BUT...he did say that apparently I don't have CRPS any more. To have CRPS, I need a score of 8, I scored 4. I didn't show all the physical symptoms needed for a score of 8.

I want to scream. Or kick the cat. One of the issues with CRPS is that the physical symptoms are NOT static. They come and go, and that basically means squat...unless you're dealing with WCB. The Hag compared it to leukemia today, and said I was in remission. They just can't figure out why the pain. And why I'm on so many drugs and still have pain.

Uh, my pain specialist explained this crap to me almost a year ago. RSD/CPRS is a nervous system issue. IT DOESN'T GO AWAY, despite physical symptoms being present or not (skin discolouration, skin temp, swelling) pain is an issue, and for ME, the best he hoped for was a 30% reduction. He's the SPECIALIST, that is known in my city for dealing with the hardest cases, RSD and oncology. And that was HIS optimum outcome for me. And this Hag thinks because the physical symptoms aren't present for the IME, then its in remission.

And I don't get the freaking not present either. My hand was swollen and purple and cold that day. I suppose that accounts for THREE of the four flipping check marks on his list.

So now they're trying to decide if they're sending me away to a pain clinic for 5 weeks or not. At which point I'll be forced to refuse, which will have me non-compliant, cut off benefits, and without my income until appeals are completed. Yippee.

I want to cry.

I WISH MY RSD WERE GONE. WHAT BENEFIT IS THERE TO ME AND MY FAMILY IN BEING ONE ARMED AND HURTING EVERY MOMENT OF EVERY DAY WITHOUT END?

Generalizations

Yup, another transfer...

I just wanted to hit on a comment about generalizations. Just as much as there are folks in genuine need of food stamps, welfare, etc and not abusing, and those that do abuse, the same can be said for disability...and let me tell ya, its no picnic to be the one who truly NEEDS Workers Comp to ante up and pay right when you're truly disabled. I doubt its any different in the States than here in Canada from the horror stories I've read on other boards, and yet much of the same attitude prevails..."What do you mean you can't WORK?!" despite the fact I have three doctors saying that I'm unfit for any level of employment...its not my personal opinion of the situation, its their medical assessment. Add to it that chronic pain is an invisible disability, and it makes for loads of fun. Comments like, "You look perfectly ok to me!" make it even more so.

Yes, there will always be some jerk that is on the 6 pm news for painting a house when he's on disability for a supposed back injury, or others who know how to milk the system for all its worth and then some. Heck, I've witnessed people like that at the treatment centre I was forced to go to for several weeks of useless, albeit excruciatingly painful pt, who bragged about moonlighting at other jobs while using their WCB funds to pay the rent. Its jerks like those that cause the issues for people like me who need the system. Its jerks like those that people think of when they hear that I'm on Workers Comp.

I guess what I'm starting this thread for is an open thought or plea that if you happen to run into someone that is on Workers Comp, don't start listing a whole bunch of jobs for them to try. Its pretty frustrating to hear. I've worked with a vocational specialist. Its not that I don't want to work that keeps me from taking you up on 'my cousin Joe has a company, I know he could use a worker like you, lemme give you his phone number!' its that I genuinely, medically, am unfit for any employment. Please don't get offended when someone doesn't take you up on your offer of help. Its not that they prefer to be on WCB. Trust me. Unless you've run into the probably 6 or 7% of folks that are milking it, they'd rather be working.

Anniversary

Yeah, I'm late again...posted over at my 'regular blog', so this is another transfer. If you haven't been reading at the 'regular', its a doozy, and well worth reading.

It seems surreal to me. May 20th was the anniversary of my injury. The day my life ended, my NORMAL life. When I was whole of body and spirit and mind. Before every day became a question not if I hurt, but rather to what degree. A year ago today I was planning my future, schooling and LPN graduation, buying our home on an acreage...it was so, so close. I could almost taste it. I had even begun studying for the anatomy and physiology prereqs that I would be enrolling in that summer. I had the very best of my two worlds. Home during the day, with my children, homeschooling Diva...then to work for 3 pm every afternoon. I loved my job, my career, and I was good at it. Very good at it.

Now...well...now. As I said, there's pain. Always. There's depression, a natural occurrence, I'm reassured by the professionals. Losing use of your dominant hand/arm and all that effects, plus pain, tends to produce that reaction. Nifty of them to validate me, isn't it? And there's stress, and anxiety. Being in public is avoided at all times if possible, since someone bumping into me causes hours of excruciating pain...so of course I'm extremely anxious to the point of vomiting if I'm forced to be in public. And just in case all of THAT wasn't fun enough, lets add in the toll something like this takes on your husband, marriage, and children. Oh, and as an EXTRA special bonus, we'll throw in having to battle WCB and one of the nastiest case managers known to man. That's not just my opinion of her, folks. My union rep shares it, and when she was quiet for a while, he actually thought we'd managed to get her fired, since he has six or seven other case files on his desk, all complaints, all with her as the case manager.

Figure this one out. The one pain treatment that's actually had any REAL effect for me is the lidocaine block. I can actually hug my children with BOTH arms. That is a huge thing. Unfortunately, the effects don't last long, 12-18 hrs or so, but I'll take what I can get. My pain Dr Rx'd it for me to have at home, via a home nursing service, an IV and pain pump. Its the same treatment I get at the hospital/pain clinic, only diff being the pain pump rather than normal IV and it runs for 12 hrs.

WCB DENIED THE TREATMENT. I kid you not. My case manager, without requesting any of the 20 or so pages of studies and literature that the pharmacy has about these blocks, went to the medical advisory team, who didn't know much about it...so it was labelled experimental. Cause THEY DON'T KNOW MUCH ABOUT IT. Meanwhile, they've been being billed for my treatments in the hospital and pain clinic, and my case manager (aka The Hag) tells me that I can still get the treatments there!!!

Here's the problem though: the pain clinic is short on space. Too many paitients, not enough time. So if I (or anyone else) can get their therapy in the community, then that's what the pain Dr wants to have happen. So I've been told I can have a few more treatments at the clinic, but that's it. To pay for this myself, looking at $200 a treatment...not to mention that if I DO pay for it, WCB could turn around and claim all my probs are from the 'experimental treatment' and cut me off.

So, I'm planning on getting completely wrecked drunk on Wed. I've gone from having plans for my family's future to this...not being able to even hug my children with both arms. Getting drunk won't solve anything...but nothing's going to solve RSD anyways. Not like getting drunk will make it worse. And no, I won't take my meds, so no worry about interactions. I'm a weak drunk anyways. Two or three drinks and I'm hooped.

****
For the record, I didn't get drunk. I had a pain flare, took meds, and crashed.

Updating...

Sorry about the lag between posting. Chronic pain will do that to a person, as will life in general, but RSD has a way of kicking butt beyond general life activity.

So, since my last post, I've embarked on a new treatment, a lidocaine pain block.

And may I announce, Ladies and Gentlemen, that for the first time EVER, we've found a pain treatment that actually BRINGS THE PAIN DOWN. A bit.

Hey, its not like its gone or anything insane, but its the first darn thing that has actually brought the pain down so that its a NOTICABLE decrease. I mean to say, I actually HUGGED my youngest with BOTH arms after the first treatment. Anyone that has RSD/CRPS in an upper extremity can attest to what a huge thing that is.

Of course, this being me, nothing happens without a glitch. During the first block, I had what my specialist termed, 'limb movement'. He didn't consider it a seizure, and felt comfortable repeating the procedure again, which we did yesterday. He knocked me out early, and so I'm not sure wth happened, but I have 2 more holes in my arm then when he first put me under, and bruised all to Hades from the IV sites. I don't know (yet) if I had more limb movement and ripped the IV out or what. I'll find out when he calls.

I also had an experience with a nasty nurse yesterday too. My first, which I suppose goes to show that the majority of the nurses that work in the Dayward are really great, since this was my 5th time in. She made it very clear to me that she resented spending any of her time with me, since other patients were there for SURGERY, and I was there for JUST A NEEDLE (emphasis hers). In fact, when it was about time for transport, she came in with a warmed blanket for me, which is SOP. She handed it to me, folded up, something I'd never ever had happen. Even before I had RSD, any time I was in the hospital and offered a warmed blanket, the nurse covered me with it. I started to explain that not only do I have RSD in my right arm, but my left arm had really been hurting the last few days from over use, and to ask for her help. She cut me off at, "I'm working one armed" and said, "Imagine if you didn't have any arms!" and walked off, leaving me to struggle with the blanket.

I felt humiliated, embarrassed, and as though I had no right to be there, which is exactly her intention, I suppose.

When I returned from my procedure, she was no longer there. I was told she had gone home, sick. Wolf thinks that since I asked another staff member what her name was, and explained what happened, either word got back to her or someone else, and she was sent home and TOLD she was sick. Either that, or she was overheard with another patient, being nasty.

So, that's the very newest stuff. I did the psych assessment, (apparently, I'm in the top 4% of the population, as far as IQ goes...which makes me scared to leave the house...cause if I'm the top 4, its really freaking scary out there, and alot of them drive) and have proof that my specialist NEVER said that...so things are about to get REALLY interesting here...

Until the next time...

Peace, love, and pain pills!

Hope He Calls...

Left a message for my pain specialist about a half hour ago. Really hoping he gets it and calls before the end of his day.

Poor man. I wonder where the line btwn 'patient' and 'stalker' is, and if I'm dangerously close to it?

One thing we haven't talked about, he and I, is what to do when the pain goes from its normal level to holy-crap-I-can't-manage-like-this-kill-me-or-drug-me-RIGHT-NOW level. And that level is approaching as I sit here. I can't go back to the ER. First of all, I was warned about the probability of not being treated the last time I was there, and second, it happens that its a Friday, again. Last thing I need is for someone to think I'm looking for some happy party drugs to start my wknd off.

Hope he calls.

ps...goes to show you what kind of functioning level I'm at. Today is THURSDAY, not Friday. Oy.

Waiting...

So much of my time is spent in 'wait and see' mode. It becomes extremely frustrating, even if patience was one of my virtues, which it most assuredly is not.

I requested a letter from the WCB hag a week ago Monday, outlining her rationale for sending me for a psych assessment. Still hasn't been received, and haven't heard squat from the hag. No big shock there, really, but frustrating anyways. To the best of my knowlege, I have the right to have any decisions about my case put into writing. If I don't receive this letter tomorrow, I will be calling her supervisor and putting the request to him.

Spoke to my union guy today. He's as concerned about the seeming lies as I am, and is taking it up the food chain...but again, more waiting involved.

Here's the thing of it all: all I'm asking is that people do their darn jobs. That's all. I'm not asking for anything bizarre or extraordinary. Do your job properly. Don't lie, don't purposely 'misunderstand', don't pass the buck. I have jumped all the hoops that have been demanded of me, and yet they create more, even if they have to use deceit to do so.

I haven't lied about my condition. Its been confirmed by no less than five doctors. So why can't WCB return the favour, and be honest in their dealings with me? I don't care if she likes me, that's not a requirement...but don't freaking LIE.