Exhaustion

Ever since my injury, and the onset of RSD, I've been dealing with sleep deprivation in one form or another. And its getting worse, rather than better.

Take last night for example. Went to bed at 11. Was still awake when Wolf crawled into bed around 1 am. Kept waking up, over and over again...I'm talking wide freakin awake. Taz woke up around 4, got him back to sleep around 430, and figured, screw it. No way I was getting back to sleep. Princess woke up at 5, but a quick bum change, and she was out again.

Everyone slept til 830 or so.

Wolf, rather alarmed at my Capser the Ghost imitation, sent me back to bed. Less than an hour later, I was up again. I'm so exhausted I'm trembling, but I can't stay asleep. I don't know wth to do about it, but I do know that if I don't get a cpl hours of solid sleep soon, I'm going to completely fall apart.

You'd figure with the groggy side effect of these meds, they'd be knocking my rump out. Not so much. I wonder if its cause of the Gravol I'm taking with them, but if I don't take the Gravol, the meds don't stay down...and yes, I know that for a fact.

*sigh*

I Don't Get It

OK, so I called my physiatrists office today, to ask that they send me the last 2 letters that WCB received. I'm forced to go to a psych assessment based on WCB saying that the physiatrist says I no longer have RSD/CRPS...if you follow that, lol

Anyways, I really felt it was in my best interest to be able to have letters in hand from the physiatrist stating without doubt that I *do* have RSD, otherwise I can see there being issues at the psych assessment, such as, "Your specialist says you don't, why do you insist that you do?" kinda crap.

So, I have the first letter, waiting on the 2nd one. I've read through this letter that supposedly says I no longer have RSD...and I don't get it. I truly truly don't understand how on the planet Earth my case mgr read this letter and came to the idea that I no longer have RSD. It states several times that pain is an issue, that pain management needs to be at the forefront of any treatment program, etc.

I've been trying to figure out how there was a misinterpretation, because the idea that the case mgr would just out and out lie still doesn't make sense to me. Do most people just roll over and not bother to check with the Drs the statements that WCB makes that doesn't seem right to them?

The only conclusion I can come to after repeated readings of this letter is that she did indeed willfully lie to me...which scares me on several levels. First, what else has she lied about? Second...am I going to be able to get my own copy of any and all correspondance about my health care from now on, because obviously she isn't to be trusted...and the idea of her getting a copy of a psych assessment and telling me the results gives me the creeps like you wouldn't believe.

Side Effects

Ok, so spoke to my pain specialist yesterday. I thanked him and apologized for allowing my fears to be what guided my treatment rather than his knowlege, expertise and experience.

I told him that I'd been taking the meds he had prescribed, but that they weren't helping at all. He gave me the go ahead to increase the dosage, and that he would deal with the pharmacy when I was running low before my allotted time for refills, as well as a new Rx if I wasn't able to get into see him before I ran out.

Called the hospital this am, they don't currently have any openings, but I'm on the list to be called if there are any cancellations.

Problems I'm facing now are side effects...and ineffectiveness still. Increasing the meds still isn't doing much for the pain issues...but it IS making me wanna toss my cookies and make me feel itchier than all holy hades...and thats WITH taking Gravol.

Called the pharmacy, and they doubt that Benedryl would help with the itch, as its a side effect, and not an allergic reaction per say. That, and the pharmacist pointed out, I'd then be taking 2 meds to counteract the side effects of one. Pharmacist recommends switching meds altogether.

*sigh*

I don't want to call the specialist again, so going to wait it out and see if it improves any.

How can meds make you feel like woofing, groggy, itchy...yet NOT really help with the pain?

*headdesk*

ER Trip

So, I finished the last blog mentioning I'd had an ER trip on Friday. Figured I'd get into the nasty details now.

Friday, I hurt. Went from a 7 (normal for me these days) on a scale of 10 to about, oh...a 14. Visions of sawing the arm off at the shoulder danced through my head. I went to the GP, and asked if he can prescribe me narcs. He tells me he's not licenced to do so, its something he's always preferred not to do. I ask what I'm supposed to do, as I'm hurting badly, and my pain specialist is out of the country, and my next appt is Mar 24. He tells me to go to the ER. I ask for, and receive, a letter from him explaining my diagnosis, and that I require narcotics upon occasion.

The last time I went to the ER, the Drs didn't know wtf RSD or CRPS was.

So, off I go. The first ER I go to isn't a full ER, and the admitting clerk tells me there's nothing they can do for me that my GP can't...they don't dispense narcotics.

I go home, and end up going to another ER.

After several hours, I'm finally seen. Dr proceeds to read me the riot act. He's some ticked...not really at me, which is nice, but at my GP. He says that the not being licenced is bs, that all that's required of my GP is that he calls and requests the narcotics triple script Rx pad. He goes off, saying how its completely irresponsible of my GP to be a primary care physician to someone with RSD and yet refuse to dispense narcs. He also informs me that the majority of his collegues would simply send me packing without treatment, as they refuse to dispense narcs to someone walking in with chronic pain, as that's the same thing that drug seeking addicts will spout. So, rather than risk giving an addict a shot, they simply refuse everyone. Niiiiiiiiice. So its ppl like ME, who have a genuine issue and need for pain control that get the shaft. Wonderful.

Thankfully, despite his ranting, the Dr did give me a shot, and also broke hospital policy and wrote me an Rx to use when the pain gets beyond what I can manage.

Thing of it is, as I explained to him, the current situation is my own bloody fault. My pain Dr has wanted me to be taking narcs, and I've been avoiding it, demanding treatment that didn't use it. My fear of addictions overrode my specialists knowlege and experience. Yes, I realize the stupidity at work there.

When I do see my pain specialist again, I'll be thanking and apologizing to him, profusely.

Thanking him for respecting my autonomy as a patient, and attempting to treat me sans narcs. Apologizing to him for allowing my fears to guide my treatment rather than his knowlege and expertise.

And promising to be a good patient, and follow his orders.

Where I'm At Now

Ok, so now you've got the history of this whole nightmare. Lets bring you up to date to where it stands as of today.

Last Thursday, I received a call from my WCB case manager. Amongst other things, she tells me that in the last letter that she received from my specialist, I no longer show any signs or symptoms of RSD/CRPS. So now, she doesn't understand why I'm in pain, since that's not an issue any longer. I question if she's read the letter correctly, as there are no signs of RSD in my LEFT arm, which was what the question was at my last appt. She proceeds to tell me that I'm being sent for a psych assessment. She also questions how I'm able to manage parenting 3 children, yet not be able to work.

I'm in such shock that I don't even know wth to say to her.

After getting off the phone with her, I called my specialist. At NO TIME has he EVER stated that my RSD/CRPS has magically vanished, nor has he EVER doubted the diagnosis. Yes, he DID state that there are no signs in the LEFT arm, but its never ever been a question about my right. Indeed, in his last letter, he stated that he considers me unfit for nursing attendant duties, and has serious doubts about my fitness for any meaningful employment. He's sending her a letter to yet again explain the situation.

Funny how the case mgr says everyone recommends my return to work.

So, that's where we stand...she blatantly lied, and her questioning my ability to parent yet not work is way over the line.

Contacted my union rep, he's taking this up with the VP at WCB.

Then, today, I get a copy of the letter she's sent to the psychiatrist for referral. In it, she states that she wants to know what dx is appropriate, if there are any previous psychiatric issues that are impacting my current condition, etc. So, she's STATING that I have some sort of diagnosis...and all of this is because SHE claims my RSD has vanished. So, WCB gets to question my mind, force me to have a psych assessment...all on a freaking LIE.

I feel violated. Since this whole crap happened, I've been poked, prodded, stretched, bent, stripped, xrayed, MRI'd...and now they get to look at my MIND too? I'm allowed no refusal, as that would be a reason to cut off my benefits. I'm allowed no privacy, dignity, sense of self that the WCB isn't allowed to put their paws all over.

Oh, and the other delightful aspect...if she doesn't like what the first psych says, she's already mentioned another assessment...and the potential to be shipped to a pain clinic hours away for 5-7 wks...meaning that I'd have to live in a hotel for the duration. Not only does that completely screw with my family, but gee, how the hell am I gonna manage washing my own hair? Putting it up in the am? My husband does that for me now...how the **** am I gonna do that on my own when my flipping arm can't raise that high???

I feel so completely violated, powerless, offended, angry, threatened, hurt...I don't even know where to start.

And this isn't even getting into the delightful trip to the ER on Friday night.

Tuesday, January 27, 2009

Ok, so to update everyone on where I'm at...I'm off work, again.

I gave my boss my Drs note, and she sent me home, saying that head office will have to sort it out. She agreed that I had been in visible pain on the Thursday, and I informed her that the Monday was worse.

I then received a letter from WCB, saying in part that pain isn't a consideration in their decision making about fitness for work, as there's no evidence or way to measure it.

WTF? Uh, they approved my claim of Complex Regional PAIN Syndrome. Wouldn't you think that PAIN would be a consideration?Then I found this: http://www.wcb.ab.ca/public/policy/manual/0301p2a7.asp

Its on their own website, a policy specifically to deal with 'chronic pain syndrome'. So how the heck does she think that pain isn't a consideration?

I've gotten my government rep involved, my union is involved, my Dr has both written a letter AND requested a call, I've written a letter, and my specialist wrote a letter, objecting to the work modifications...and dead silence from WCB.

I've done everything asked of me. I still may lose my benefits until an appeal is filed and heard, which can take 3-4 mths from the initial request.

Union isn't due to get my full file for another 4 wks or so.

So, I'm in limbo, waiting.

Tuesday, January 20, 2009

Long story short: I'm back at work.

Yeah, I can hear you scream, 'WTF?' from here. Believe me when I say that its pretty much my reaction too.

I was discharged from the WCB program of PT, OT, ET after 4 wks. All goals were deemed, 'goal not met'...but somehow, I'm fit for work.

Yeah, I don't get it either.

So, I have major restrictions. Basically, not using my rt hand/arm. If I flat refuse to go, I lose benefits. So, in I go.First day...lasted a grand total of 90 minutes. Was supposed to be there for 4 hrs. After an hour or so, the LPN came up to me, concerned, said I looked like I was in pain. Then an NA came by, said the same thing. Case manager came to find me to talk about my schedule, took one look at my face and recoiled. Asked if I was ok. Told her, 'I hurt. A lot.' She sent me home, told me not to come in the next day (Friday) but try again Monday. Went home in excruciating pain.

Monday. Went to the specialist for a nerve conduction test on the left arm. Nerves are ok, but he said that doesn't mean much. Agrees I'm having issues, figures its at LEAST something to do with over use. I pointed out that I'm back at work using the left exclusively. Asked, "In your professional opinion, should I be at work?" He said he'd be writing a letter with further suggestions as to my work capabilities. What that means, I dunno, but definately he's not agreeing with the situation as is. Don't know if he's actually telling them I can't work or what, I guess I'll find out later.

Trundle back into work. Last 2 hrs. Go home, turn around and go to the ER for pain meds, cause I truly could not deal. Get informed at the ER that they would treat me *this time* but that they couldn't be my pain management option. I explained that I've been resisting narcotics, but at this point I didn't care if they gave me a shot of Demerol, or just took me out back and shot me, just as long as the pain was tolerable. Got Demerol with a Gravol chaser.

Brings me to today. Saw my GP, he is still adamant that I cannot work. But, as he said, "I can't force WCB to keep paying you though." Talked to my union, same gig. Document everything, etc...but we can't promise that WCB won't cut you off.

At the advice of the union, I also sent in a letter to my case manager, detailing the last 2 attempts at work, and the results, asking for her assistance, esp considering that my pain doc is out of town, and the soonest appt I could get was for Mar 24.

So, now what? Good question. I'm supposed to work again tomorrow, according to WCB and my job. Not according to my GP. Union says, if Dr says no, you don't go...but it might mean no more $. Great choices there.

Pray that something positive happens ASAP. We can't afford to be without my income.