Thursday, February 19, 2009
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.
Tuesday, February 17, 2009
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.
Saturday, February 14, 2009
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.
Friday, February 13, 2009
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.
Wednesday, February 11, 2009
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.
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?
Tuesday, February 10, 2009
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.
Monday, February 9, 2009
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.
Saturday, February 7, 2009
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.
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.
Bad news is there's something going on with my right eye. RN before the procedure noted that the pupil in my rt eye is dilated more than my left. Apparently pupil dilation is part of the sympathetic nervous system...what I'm wondering is if its from my migraines, or maybe what's causing them.
Also, the droopy eye thing was a lot worse than the first time, and red as heck. Felt like I've got vinegar and sand in my eyes. My tears actually hurt.
So, I'm really freaked out about the eye issue. Specialist is off on vacation til the New Year, so I'll go see my GP next week. I'm worried about potential damage to the eye...Last thing I need is to be the one eyed one armed flying purple...errr...you know what I mean.
First was successful, in that I had some reduction in pain.Second was completely unsuccessful.
So, this is the tie breaker. If it works this go 'round, we'll go again...if it doesn't...that's it, end of the line, everyone off.
Specialist is talking more narcotics...including methadone.
I'm really not wanting to start down that particular level of hell, tyvm. Being a stoned zombie, incapable of parenting doesn't seem like an option to me. But when its bad, I'd take anything shoved my way. Not a great place to be.
Hoping that this works, even just the tiniest amount. I so don't want to be on narcotics. Really really really don't. Both my maternal grandparents were/are alcoholics and the addiction potential scares the living crap out of me. I've been told, repeatedly, that 'you can't be an addict when you're needing the meds for pain management, its only if you're taking them without cause...' But that doesn't make much sense to me. Your body gets dependant, the reasons why don't matter.
I can't be stoned outta my gourd and be a wife and mother. I won't do that to my family.
Pray, vibe, whatever you've got that this shows some positive results...cause the options suck.
There have been more than one of you in my life lately. Let me explain a few things for you quickly.
CRPS is NOT arthritis. It is NOT a pulled muscle, pinched nerve, or a product of my imagination. Just because your friend's sister's cousin's aunt's husband's nephew's girlfriend had AMAZING results with ground up bat droppings made into a poultice and applied to their feet on the evening of the first full moon does NOT mean that a) it would work for ME and b) that I'm going to rush out and gather bat droppings. I am under the care of NO LESS than five freaking doctors at the moment. I'm willing to bet that if bat droppings had any medicinal affect, ONE of the 5 would have heard of it. So stop already.
DO NOT tell me how horrible my life is, and then ask breathlessly for details. My medical situation, history, and proposed treatment is simply none of your business. If it were, I would tell you. Heck, if I thought it would actually HELP me to talk to you, I would...but not when you're all eager and salivating for the latest news just so you have something to talk to your friends and family about.
And another thing. DO NOT tell me how there are children dying of cancer, managing disabilities, pain, etc and doing it far better than I am. This is MY personal struggle, MY battle, and I quite frankly don't give a fuzzy rat's behind how I rate in your personal view. Poor lil Jimmy is just a breathing head, drags himself across the ground with his front teeth, how dare I complain? Well, good for Jimmy. I don't care. I get to moan, whine, and gnash my teeth if I so desire, BECAUSE this is MY life. Attempting to guilt me, manipulate my emotions doesn't work. So just back the heck off.
I don't have booze or chocolate. Consider yourself WARNED.
And if you still have the need to tell me about some mythical treatment, or children who are having their limbs ripped off an inch at a time by maggots, I sincerely hope you get something large and unwieldy stuffed in a body oriface. Repeatedly.
And to those who will feel compelled to point out, "They were only trying to help!" Please, just don't. Help doesn't guilt. Help doesn't invalidate, manipulate, or leave you feeling like absolute crap BECAUSE you hurt.
And that's exactly what this is. This is the last chance for any sort of pain relief, recovery, the whole shebang.
All riding on tomorrow.
For someone that's had every potential possibility not do squat, who has negative results with anestetic, I'm more than a little freaked.
*sips a rye and coke*
Thankfully, a liberal application of...nummy drink goodness is calming me down. Yeah, 'calming', thats it. :oP
Hey, I figure if they kill me off tomorrow, at least I'll have had a good night before, right?
And yeah, its unlikely they'll kill me. Whole boatload of stuff that COULD go wrong, and dying is on the list, but thats a bit more unlikely than ending up with right sided paralysis.
I need more rye, and to quit trying to look at the positive side of life
Wolf and I are managing in our own ways. Sorta. He's off work right now, due to WCB saying that they want me in a day program...then their Dr saying not until after the ganglion block. Still got a call from my work that am though, which was really interesting...I'm not approved for physio, etc, but for work? How does that happen? Or is it, as I suspect, that the case mgr called my work before even hearing from her own WCB Dr?
I'll find out on Monday, probably. Likely with being told I'm 'non-compliant' for not returning to work...Did I mention the pain specialist says no? Yeah, its a cluster hump.
Everything in my life hinges on decisions made for me, about me, by others who don't have the first foggiest clue as to who I am as a person, but just a case file. I feel like my humanity, my life is being reduced to pieces of paper, statistics, and what someone else thinks should be happening, working, whatever.
It looks like PT is rapidly coming to an end. No improvements = waste of time and resources. My fear is, how much WORSE is it going to get without PT? Is PT stopping it from getting completely out of control? Or is it simply a placebo? According to the research my PT gave me last night, there is absolutely no rhyme or reason for recovery...or non recovery. No time line. Either you recover, or you don't. Yay. I seem to be fitting in the 'don't' category.
So, I have an appt for a pain clinic on the 8th. Consultation. See what if anything they suggest, because my migraines are increasing in frequency and intensity...and that's got to be somehow related to this CRPS. Lack of sleep, stress of chronic pain, whatever.Its all completely frustrating.
I don't think that its really set in. I just can't think of the rest of my life like this...my mind just can't grasp it. I've witnessed what chronic pain can do to a person, to their personality, to their family...I don't want that for me or mine. It scares the hell out of me...the idea that the younger two won't remember me before I was injured...that to them their mom was never 'normal'...I just don't know.
Went and saw my GP again because I keep having really bad swelling in my hand, and it turns this delighful red/purple colour, and is icy cold. It was so bad last night that Wolf sat rubbing it, trying to get it warm, and I ended up wearing a mitten, trying to ease the cold. The pain is pretty intense when it does this...like having your hand in a snowbank, that achy/burning cold intensity.
Dr told me that its Reflex Sympathetic Dystrophy, told me to look it up at home...and then told me he was really, really sorry. Yeah. Words you wanna hear, right? He told me that he wished it wasn't, and he hopes like heck he's wrong, and he's referring me to a pain specialist...but that he's seen other cases and certain its what's going on with me. He also told me that the specialist and WCB will likely ping pong me for 6 mths to a year saying it isn't before they cave and admit it is...and there's a 50% chance that it will improve...but it will never heal or go away completely.
So, went for the MRI. Let me just say that I'm sooooooooo freakin glad that Wolf and I got some common sense and realized that this was something that I COULD NOT do on my own with the kids. Took 2 freakin hours for starters.To anyone that has never had the pleasure of an MRI with contrast dye, be grateful. Not a fun time.The dye was first. Freezing, thank GOD, then the dye needle. That thing is looooooooong. And the lovely sensation of it hitting the bone...*cringe* Thank heavens the folks had a sense of humour though. I was nervous as heck about the whole thing, and kept cracking jokes, and they went right along. I ended up with iodine stains on the front of my gown (One Size Fits Jabba the Hutt) and then, since there was no back way around, ended up paraded through the waiting room. And let me say that dried iodine and dried blood look exactly the freaking same. I told the tech that we probably managed to scare the crap out of several ppl waiting, cause I made eye contact with one woman, and I saw her eyes widen as she stared at my gown, and I thought she was going to pass out.
Then the MRI itself. I confirmed today that I so do not do well in enclosed spaces. Like, at all. I cried the entire half hour I was in there. I did manage to keep from pressing the emergency 'let me the hell out' bell though, by telling myself, "Five more minutes and I'll press it" over and over again until they finally got me out. Closing my eyes didn't help much, cause then I felt even MORE closed in than I actually was, convinced that the top of the tube was almost against my nose. I kept thinking that this is what it felt like to be buried alive...and that this is how it must feel to be rolled into a crematorium. My imagination is sometimes a curse. Ugh ugh ugh ugh ugh.
I'm sore as heck, and sincerely hoping and praying that whatever is wrong with my shoulder shows up with a bright neon arrow pointing to it. The results are being sent both to my PT, so I should know whats up Friday. If I never go through another MRI, it'll be too soon.
For those not familiar with me, buckle in and hold on tight. I'll be copying some of the entries from my other blog to bring you up to speed, but for now, here's the basics:
I was working as a nursing attendant, with plans to pursue my education to become an LPN (Licenced Practical Nurse). I was working 6 days a week, double shifts, the sole income support for my family. Worked afternoon shifts, 3-11pm, so that my husband could start his own business during the day, and still enable me to homeschool our eldest daughter. On May 20th, 2008, everything changed...in ways I could not have predicted.
I was grabbed by a resident I was working with. Long story short, I was initially diagnosed with a strain/sprain of right shoulder through fingers. A partially torn shoulder tendon was found later via MRI. Then, in July, I was diagnosed with Reflex Sympathetic Dystrophy (RSD) aka Complex Regional Pain Syndrome (CRPS).
Its been a roller coaster, to say the least. Chronic pain is enough to deal with, but adding in marriage, family...and the Workers Compensation Board (WCB) on top of it, and you have the makings of a level of Hades never dreamed of.
Stay tuned...when travelling through hell, the only thing to do is keep going...and I can use the company.