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.

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.

Friday, December 19, 2008

The good news is that it has taken the edge off the arm, so on that basis, a repeat is likely. Yay!

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.

Wednesday, Dec 17, 2008

I have my 3rd block tomorrow, be at the hospital for 630 am.

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.

December 05, 2008

Dear Well Meaning People;

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.

Monday, November 17, 2008

Ganglion block is tomorrow at 7am. I don't want to go, I don't want to get a needle in the neck...I don't want to take this last bet yet.

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.

Woo.

I need more rye, and to quit trying to look at the positive side of life

Saturday, November 15, 2008

Things have been just a WEE bit chaotic around here. Being sent out of town by WCB to go for an independant medical assessment, being told that according to the IMA, I can work sedintary, pain specialist saying no, going for a ganglion block on Tues (google it, its not a fun thing, and I'm scared spitless), migraines out the wazoo, more Dr appts, pain, blah blah blah. Kinda the old, "same crap, different day" situation.

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.

Saturday, September 27, 2008

I feel like a dandelion seed, tumbling wherever the wind sends me, without any hope of guidance or control over my path or destination.

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.

Friday, July 25, 2008

Went and saw the PT that WCB set up, and he agrees with my GP. He saw how badly swollen my hand was, even though the discolouration wasn't anywhere near as bad at that time. My reaction to his testing further confirmed it...for him, anyways. Its the stupidest bloody thing. I haven't mentioned it because I honestly thought I was losing it, and that someone would think I was making this up...Give you an example. With his finger tips, he stroked the outside and inside of my arm. Initially, I didn't feel much at all...kinda like my skin was a bit numb. About 5 minutes later...WHAM. Suddenly my arm was on fire, like he'd rubbed me with sand paper. I've been having this happen, and just thought I was losing it...turns out its a part of the RSD. The nerves are extremely over reactive, but the signal doesn't travel as fast as it should...if that makes any sense at all. Course, the PT doesn't carry any weight when it comes to diagnosing, that's still up to the pain specialist...and no clue how long its gonna take to get into someone. That alone could take months. Yippee. But, it is someone that is working for WCB confirming the Dx, so its another brick in the wall.

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.

Wednesday July 23rd, RSD Diagnosis

Funny...never realized so much happened on a Wednesday...

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.

Freaking wonderful.

Wednesday, June 25, 2008

This was before the RSD diagnosis:

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.

Chronic Pain And Me

For those already familiar with my other blog, Not A Stepford Wife, I've decided to seperate the chronic pain issues, and of course, WCB issues into this blog, and keep the other focused on family life.

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.