SO, as a few of you know, the pain levels have been kicking my butt lately. I noticed that the nasty brain spikes started returning the day after I took my last prednisone and antibiotic, and wondered if it was related.
The pain doc said: "Absolutely." With a dental abcess, and my occipital neuralgia, the pain from the abcess, and the stress of infection and the prednisone, it aggravated the occipital nerve to the point that my last block wore off about a month or two too soon.
I'm scheduled to have needles shoved into my brain yet again on the 7th of September. That was the earliest they could get me in, and they APOLOGIZED for that. COOL!
I asked my pain doc about getting something to take at night, something that would last longer than 2-3 hours, because I'm sick of waking up and having to take more drugs. He did offer a stronger version of my current pain med, but darnit, I'm sick of pills. I have to take way too many on a daily basis as it is. So I asked about patches.
He said the Duralgesis patches aren't any good for acute pain, and they actually have to build up in your system. Then he stopped, and asked if I'd tried the Lidoderm patches. Why, no, no I hadn't.
..... Oh. My. God.
First off, they're huge, so I have to cut them down (which also means I get more usage out of each scrip), since I don't exactly have a big neck. I worried a bit, because I have some adhesive allergies, but the adhesive on these is really, really mild (in fact, it barely wants to stick on the back of my neck, darn hair).
.... And. They. WORK.
Not only do they work, they work directly on the area that HURTS, and doesn't affect the rest of the body. I can still take other pain meds without a problem at the same time. More importantly, they don't screw around with my brain or perception, so I don't feel all drugged up.
AND -- I can use them when my RSD sets off a joint or severe muscular pain elsewhere on my body, with direct to the pain relief.
My husband called earlier to check in after my appointment, and he said I sounded a hundred times better than I did yesterday.
Well, yeah, of course -- I can move my head without whimpering now, and my neck muscles are even loosening up a bit because they aren't clenching over the pain.
Wheeee!
Showing posts with label rsd/crps. Show all posts
Showing posts with label rsd/crps. Show all posts
Monday, August 27, 2007
Monday, July 17, 2006
Objects in Motion
We're not in such a great place right now. Okay, a pretty bad place. Husband has lost his job, which means no money, no insurance -- well, you get the idea. Without insurance, my meds alone are 1200 a month. He's diabetic, which means he needs meds too. Which he's ignoring, but I'm used to that.
He COBRA'd my insurance so I'd have it through July, which actually enabled some real progress to finally be made with my last neurologist visit.
Bad News: Add Occipital Neuralgia to my list of Things Wrong With Pooka
Good News: It earned me a trip to (wait for it) ... A PAIN CLINIC!
My appointment at the pain clinic is this Thursday for a nerve block on my occiptal nerve, which -should-, theoretically, take care of the worst of the break-through and OMFGSBJ Can I Die? headaches.
I'm supposed to be there several hours. I already got the phone call, with the "no food after 8:30, clear liquids only" orders. So I know it's not just a background and history visit. People trying to HELP me. Whodda thunk it?
So it's going to be two days late to be a 'real' birthday present for me, but who counts when it's a GOOD present, right?
Pain relief. Better than freakin diamonds, as far as I'm concerned. Oh, who am I kidding, I don't really like diamonds anyway. Better than a new 260 gb hard drive and a 21" flatscreen monitor. Yeah, now THAT works!
Yep. I'm turning 38 tomorrow.
No fretting over aging at this point, I mean, I'm already poking 40 with a short stick, and my body is going about its unnatural business and aging faster than my years spent breathing anyway. Maybe it's a flux in quantum mechanics, or my body is going by "mileage" instead of "years". I suppose that would quantify out why my body is definitely trying to push the 65+ range instead of a nice perfectly normal 38.
So, the List:
--Reflex Sympathetic Dystrophy/Complex Regional Pain Syndome (RSD/CRPS)
--Fibromyalgia (which I argue with after the new findings)
--Thoracic Outlet Syndrome (same argument, just symptoms misread)
--Osteoarthritis
--Arnold Chiari Malformation I
--Cervical Spinal Stenosis
--Peripheral Neuropathy
--Occipital Neuralgia
Quite a doozy to look at, huh? And of course, I'm already wearing bifocals, which I knew I needed, but never realized how much till I had them, and suddenly I could read things again without doing the "find the right distance" dance.
The List sort of destroys the whole "aging gracefully" concept. There's very little graceful about me anymore. I stay bruised from stumbling, bouncing into things, and half the time not even feeling the impacts that leave the marks.
About the only part that IS aging gracefully is my face. Which is weird, since that's one of the places that usually shows signs first. But no, you can look at my hands and tell, but I am surprisingly free of most wrinkles and lines on my face. Granted, my face is now so gaunt that there's not much to help make wrinkles visible, but trust me, I've LOOKED for them, and I really don't have the things.
I guess you take what you got, and that has to be good enough.
He COBRA'd my insurance so I'd have it through July, which actually enabled some real progress to finally be made with my last neurologist visit.
Bad News: Add Occipital Neuralgia to my list of Things Wrong With Pooka
Good News: It earned me a trip to (wait for it) ... A PAIN CLINIC!
My appointment at the pain clinic is this Thursday for a nerve block on my occiptal nerve, which -should-, theoretically, take care of the worst of the break-through and OMFGSBJ Can I Die? headaches.
I'm supposed to be there several hours. I already got the phone call, with the "no food after 8:30, clear liquids only" orders. So I know it's not just a background and history visit. People trying to HELP me. Whodda thunk it?
So it's going to be two days late to be a 'real' birthday present for me, but who counts when it's a GOOD present, right?
Pain relief. Better than freakin diamonds, as far as I'm concerned. Oh, who am I kidding, I don't really like diamonds anyway. Better than a new 260 gb hard drive and a 21" flatscreen monitor. Yeah, now THAT works!
Yep. I'm turning 38 tomorrow.
No fretting over aging at this point, I mean, I'm already poking 40 with a short stick, and my body is going about its unnatural business and aging faster than my years spent breathing anyway. Maybe it's a flux in quantum mechanics, or my body is going by "mileage" instead of "years". I suppose that would quantify out why my body is definitely trying to push the 65+ range instead of a nice perfectly normal 38.
So, the List:
--Reflex Sympathetic Dystrophy/Complex Regional Pain Syndome (RSD/CRPS)
--Fibromyalgia (which I argue with after the new findings)
--Thoracic Outlet Syndrome (same argument, just symptoms misread)
--Osteoarthritis
--Arnold Chiari Malformation I
--Cervical Spinal Stenosis
--Peripheral Neuropathy
--Occipital Neuralgia
Quite a doozy to look at, huh? And of course, I'm already wearing bifocals, which I knew I needed, but never realized how much till I had them, and suddenly I could read things again without doing the "find the right distance" dance.
The List sort of destroys the whole "aging gracefully" concept. There's very little graceful about me anymore. I stay bruised from stumbling, bouncing into things, and half the time not even feeling the impacts that leave the marks.
About the only part that IS aging gracefully is my face. Which is weird, since that's one of the places that usually shows signs first. But no, you can look at my hands and tell, but I am surprisingly free of most wrinkles and lines on my face. Granted, my face is now so gaunt that there's not much to help make wrinkles visible, but trust me, I've LOOKED for them, and I really don't have the things.
I guess you take what you got, and that has to be good enough.
Friday, June 16, 2006
Maxwell's Silver Hammer
Well ... no surgery for now. The Chiari hasn't changed in size, thus, no surgery. Okay, fine.
It gets better.
C4-C5 disc is ... uncooperative. Bulging, was the word used. Cervical Spinal Stenosis, for accuracy. "Avoid car wrecks and whiplash and you should be fine." Hah.
(Teri's comment was "...and you told them to avoid attempts at humor?")
There are lesions on my brain. I have RSD, which is degerative. I have a cervical disc hating on me. I have Chiari --- AND YET MY @#$#*& NEUROLOGIST CAN'T FIGURE OUT WHY I HAVE HAD A HEADACHE FOR 300 DAYS!
(Teri's addition: "Because your neurologist has never had a headache? and is a borderine moron?" I love her.)
He tells me it's just migraines -- cept, migraine drugs don't help. He tells me the Chiari isn't bad enough for all the symptoms -- cept, every Chiari patient and everyone on my Chiari list says that at ANY point it's enough to SHOW on an MRI, it's enough to be a problem.
Though his confusion boggles me after looking at the patient receipt with the ICD-9 codes and diagnoses on it. Compression of the brain. Cervical Spinal Stenosis. RSD. And yet he's confused. Uh huh.
Today, he decided to go for a dual attack -- an anti-depressant that also is used to treat headaches and neurological pain, particularly the peripheral neuropathy I have -bad-. And you know what?
AFTER 300 DAYS OF HEADACHE, DAMN STRAIGHT I'M DEPRESSED!
"Okay. I'm lost, I'm angry ... and I'm armed."
Yeah, I took the drugs.
I wonder what my GP has for rising homicidal mania.
It gets better.
C4-C5 disc is ... uncooperative. Bulging, was the word used. Cervical Spinal Stenosis, for accuracy. "Avoid car wrecks and whiplash and you should be fine." Hah.
(Teri's comment was "...and you told them to avoid attempts at humor?")
There are lesions on my brain. I have RSD, which is degerative. I have a cervical disc hating on me. I have Chiari --- AND YET MY @#$#*& NEUROLOGIST CAN'T FIGURE OUT WHY I HAVE HAD A HEADACHE FOR 300 DAYS!
(Teri's addition: "Because your neurologist has never had a headache? and is a borderine moron?" I love her.)
He tells me it's just migraines -- cept, migraine drugs don't help. He tells me the Chiari isn't bad enough for all the symptoms -- cept, every Chiari patient and everyone on my Chiari list says that at ANY point it's enough to SHOW on an MRI, it's enough to be a problem.
Though his confusion boggles me after looking at the patient receipt with the ICD-9 codes and diagnoses on it. Compression of the brain. Cervical Spinal Stenosis. RSD. And yet he's confused. Uh huh.
Today, he decided to go for a dual attack -- an anti-depressant that also is used to treat headaches and neurological pain, particularly the peripheral neuropathy I have -bad-. And you know what?
AFTER 300 DAYS OF HEADACHE, DAMN STRAIGHT I'M DEPRESSED!
"Okay. I'm lost, I'm angry ... and I'm armed."
Yeah, I took the drugs.
I wonder what my GP has for rising homicidal mania.
Tuesday, May 30, 2006
Is it dead yet?
Well, I sure feel it.
The Chiari is kicking my ass with a vengeance. For a while, the meds the neuro gave me helped, but I can't even walk across the room without stumbling into things. My coordination is just gone. Visual disturbances totally blow goats for quarters, whether it's a sudden lack of depth perception, or halos, or an inability to focus at all. Memory? Forget it, I can't recall even simple things that I've known for years. I get frustrated over feeling so stupid.
And the headaches, oh god, the headaches. I've spent since last Thursday night crying. Drove DG crazy all weekend, because I was just hopeless. When I woke up crying today after only getting about 4 hours sleep, DG had enough.
Saw my GP today, filled her in a little more. Nice happy shot of Toradol to the way too scrawny ass cheek (mercifully, my sobbing at her during moments where I couldn't remember stuff distracted her from my weight -- yes, I've lost MORE weight, but that happens when the drugs stop working), and suddenly, I can move my neck again. It was a start.
Unlike my neuro, my lovely GP believes in pain meds. If you are in pain, you don't rest, you stress, pain gets worse. Some relief, and you can heal, or at least function. I have drugs. Life is improving already, just from the Toradol. Gotta bloody remind myself to just give in and stop being so stubborn and hit the ER for a Toradol and dialudid shot BEFORE it reaches the pain point that it did today.
Of course, as usual, gotta fight with insurance over them not wanting to pay for a med. GIVE ME MY DAMN ZYRTEC, YOU FREAKS. Stupid AETNA. I wanna BREATHE, people. Anyway.
I also see the neuro Friday.
At that point, we'll set up my next MRI, which will -hopefully- indicate the Chiari is bad enough for me to have my skull carved on as a birthday present. Ghoulish me, yes, I know, but frankly, getting the decompression surgery around my birthday WOULD be a present. I might finally see some real relief here.
I'm going to attempt to try to keep up a bit more here, it's just not always easy. Words are no longer my friend, they like taunting me from a distance. I will however, make sure I update when I know about the MRI, and the results, and if they're going to carve on my skull or not.
They damn well better. I can't handle another 6 months of this.
The Chiari is kicking my ass with a vengeance. For a while, the meds the neuro gave me helped, but I can't even walk across the room without stumbling into things. My coordination is just gone. Visual disturbances totally blow goats for quarters, whether it's a sudden lack of depth perception, or halos, or an inability to focus at all. Memory? Forget it, I can't recall even simple things that I've known for years. I get frustrated over feeling so stupid.
And the headaches, oh god, the headaches. I've spent since last Thursday night crying. Drove DG crazy all weekend, because I was just hopeless. When I woke up crying today after only getting about 4 hours sleep, DG had enough.
Saw my GP today, filled her in a little more. Nice happy shot of Toradol to the way too scrawny ass cheek (mercifully, my sobbing at her during moments where I couldn't remember stuff distracted her from my weight -- yes, I've lost MORE weight, but that happens when the drugs stop working), and suddenly, I can move my neck again. It was a start.
Unlike my neuro, my lovely GP believes in pain meds. If you are in pain, you don't rest, you stress, pain gets worse. Some relief, and you can heal, or at least function. I have drugs. Life is improving already, just from the Toradol. Gotta bloody remind myself to just give in and stop being so stubborn and hit the ER for a Toradol and dialudid shot BEFORE it reaches the pain point that it did today.
Of course, as usual, gotta fight with insurance over them not wanting to pay for a med. GIVE ME MY DAMN ZYRTEC, YOU FREAKS. Stupid AETNA. I wanna BREATHE, people. Anyway.
I also see the neuro Friday.
At that point, we'll set up my next MRI, which will -hopefully- indicate the Chiari is bad enough for me to have my skull carved on as a birthday present. Ghoulish me, yes, I know, but frankly, getting the decompression surgery around my birthday WOULD be a present. I might finally see some real relief here.
I'm going to attempt to try to keep up a bit more here, it's just not always easy. Words are no longer my friend, they like taunting me from a distance. I will however, make sure I update when I know about the MRI, and the results, and if they're going to carve on my skull or not.
They damn well better. I can't handle another 6 months of this.
Thursday, September 08, 2005
Insomnia Zombie
It was past 7 am this morning when I finally fell asleep. That was WITH medication assistance. I won't admit to how much I had to take to finally pass out, however, for the paranoid, I know well my own medication limits (and how my body does or doesn't to it, with my effed up brain chemistry), but it hasn't taken that much in a long time.
Out of that, I got less than 7 hours sleep. Probably closer to 6.
Haven't had a cycle quite this bad in a long time. Sure, I go through the phases, but with chronic insomnia, it tends to sneak up on you, and you don't realize just how bad it is until you have nights like last night, or the 48 hour days. I've gone more than 72 hours solid without a single hour of sleep before. And I ACHE from the lack of real sleep. Both brain and body hurt, and I feel like I'm in a fog.
On Insomnia.
There's multiple ways in which insomnia affects people. There's the "can't go to sleep" folks (sleep onset insomnia) that can lay in bed for hours without passing out. I'm one of those. There's the "early wakers" (sleep maintenance insomnia) who go to bed with no problem, then will suddenly snap wide awake well before they've gotten enough sleep. Occasionally I have this problem as well, but I'm lucky enough that if I don't move, usually I can drift back off.
But then there's a third problem, and it's very common to those with fibromyalgia, RSD, and other chronic pain disorders, as well as those suffering from depression. REM disturbance (REM rebound, excessive dreaming, where the body leaps right into REM instead of going through the stages). Or rather, in my case, Too Damn Much REM sleep.
I am a Stage 5 sleeper. I go from Stage 1, which instead lasts at least an hour or longer when I finally start to drift, to Stage 5. Stage 3/4 damn near doesn't exist.
Active sleep. I wake up TIRED, because my brain is active all night.
And I've been doing this for 25 years. Are we having fun yet?
Out of that, I got less than 7 hours sleep. Probably closer to 6.
Haven't had a cycle quite this bad in a long time. Sure, I go through the phases, but with chronic insomnia, it tends to sneak up on you, and you don't realize just how bad it is until you have nights like last night, or the 48 hour days. I've gone more than 72 hours solid without a single hour of sleep before. And I ACHE from the lack of real sleep. Both brain and body hurt, and I feel like I'm in a fog.
On Insomnia.
There's multiple ways in which insomnia affects people. There's the "can't go to sleep" folks (sleep onset insomnia) that can lay in bed for hours without passing out. I'm one of those. There's the "early wakers" (sleep maintenance insomnia) who go to bed with no problem, then will suddenly snap wide awake well before they've gotten enough sleep. Occasionally I have this problem as well, but I'm lucky enough that if I don't move, usually I can drift back off.
But then there's a third problem, and it's very common to those with fibromyalgia, RSD, and other chronic pain disorders, as well as those suffering from depression. REM disturbance (REM rebound, excessive dreaming, where the body leaps right into REM instead of going through the stages). Or rather, in my case, Too Damn Much REM sleep.
I am a Stage 5 sleeper. I go from Stage 1, which instead lasts at least an hour or longer when I finally start to drift, to Stage 5. Stage 3/4 damn near doesn't exist.
Active sleep. I wake up TIRED, because my brain is active all night.
And I've been doing this for 25 years. Are we having fun yet?
Thursday, April 10, 2003
PTA or PITA?
Two acronyms that should *never* be used together:
PTA and RSD. Man, I'm flared up.
Can you just picture DG and I surrounded by PTA moms? Stop laughing. No, I mean it. Stop laughing.
Yes, we just endured a PTA meeting for the sake of Thing 2 and a school full of kindergartners that pranced up on stage and sang at us. Loudly. Enthusiastically.
From "Six Little Ducks" all the way through "You're a Grand Old Flag," some forty or so 6 year olds up in front of a full crowd for the very first time. And they did it very, very well.
And I must say that I have never in my life seen such a collection of certified card-carrying pasty-faced, four-eyed, plastic pocket protectored pencil-necked geeks outside of a Star Trek convention. You just know every one of those dads are bringing in more figures than a Playboy convention. White collar bastards. ;)
Unfortunately, they all think their children are exempt from things like manners.
I'm ... just going to leave it right there without another word. Otherwise, I might just go off in a rant and offend some sensitive goober who feels their little darling shouldn't have to wait for someone to move, that they have every right to push and shove at both adults and children alike, and that their openly kicking an adult in their way is just a cheerful display of spirit and individuality.
And for that sensitive goober, I have two important words that I'm sure will play an important role in their little darling's future: Death Penalty.
Never wanted a taser so bad in my life.
Let me clarify a bit here. Now I'm all for letting kids be kids. They're going to run and scream and play and have fun, it's what kids should be doing. It should NOT, however, be at the expense of anyone else, and should not endanger anyone else.
The child who kicked my cane because it was in his way did so with his parent sitting less than three feet away, watching him the entire time. Daddy saw me stumble when my support wasn't there. Neither child nor parent said a word about it.
The other little heathens that shoved and pushed through on the other side of me all but finished me off. Score one, and only one, for being as heavy as I am.
Isolated incidents? Not a chance. Even sitting down, I wasn't safe. No one else in the auditorium was either. I can't even try to imagine what these kids are like at home.
My children aren't angels, and I'll be the first to admit it. The Things, however, didn't push, or run and scream inside, said "Excuse me" when they needed to and hushed up when the program began.
Parents, if you're going to complain about the problems in the world, make sure you aren't part of them.
PTA and RSD. Man, I'm flared up.
Can you just picture DG and I surrounded by PTA moms? Stop laughing. No, I mean it. Stop laughing.
Yes, we just endured a PTA meeting for the sake of Thing 2 and a school full of kindergartners that pranced up on stage and sang at us. Loudly. Enthusiastically.
From "Six Little Ducks" all the way through "You're a Grand Old Flag," some forty or so 6 year olds up in front of a full crowd for the very first time. And they did it very, very well.
And I must say that I have never in my life seen such a collection of certified card-carrying pasty-faced, four-eyed, plastic pocket protectored pencil-necked geeks outside of a Star Trek convention. You just know every one of those dads are bringing in more figures than a Playboy convention. White collar bastards. ;)
Unfortunately, they all think their children are exempt from things like manners.
I'm ... just going to leave it right there without another word. Otherwise, I might just go off in a rant and offend some sensitive goober who feels their little darling shouldn't have to wait for someone to move, that they have every right to push and shove at both adults and children alike, and that their openly kicking an adult in their way is just a cheerful display of spirit and individuality.
And for that sensitive goober, I have two important words that I'm sure will play an important role in their little darling's future: Death Penalty.
Never wanted a taser so bad in my life.
Let me clarify a bit here. Now I'm all for letting kids be kids. They're going to run and scream and play and have fun, it's what kids should be doing. It should NOT, however, be at the expense of anyone else, and should not endanger anyone else.
The child who kicked my cane because it was in his way did so with his parent sitting less than three feet away, watching him the entire time. Daddy saw me stumble when my support wasn't there. Neither child nor parent said a word about it.
The other little heathens that shoved and pushed through on the other side of me all but finished me off. Score one, and only one, for being as heavy as I am.
Isolated incidents? Not a chance. Even sitting down, I wasn't safe. No one else in the auditorium was either. I can't even try to imagine what these kids are like at home.
My children aren't angels, and I'll be the first to admit it. The Things, however, didn't push, or run and scream inside, said "Excuse me" when they needed to and hushed up when the program began.
Parents, if you're going to complain about the problems in the world, make sure you aren't part of them.
Wednesday, April 02, 2003
Penny the Poked Purple Pooka
Why did the orange stop in the middle of the road?
He ran out of juice.
Ah, Laffy Taffy. Inane, and yet so accurate. Welcome to my day.
Neurologist appointment, check. Note on check-in that I had lost another 3 or 4 pounds, groovy.
Poked, prodded, stuck, forked, reflexed, pushed, pulled, teetered, wobbled, and generally abused in every basic diagnostic way. Tuning forks are fun on the side that works, marching fire ants on the bad one. Wee me. Nasty little pokesy things to test sensation SUCK. Or stick. Whatever.
RSD diagnosis fully confirmed, forehead to fingertips, forehead to knee on my right side.
Fibro ... is actually an Iffy now.
Immediately ruled out my medications as being a cause. One more scratched off the list.
Doc does a few tests, takes a look at my meds, has kittens over the amount of Neurontin. We're not doubling it. We're not tripling it (well, we are ... for a week). He ranted and muttered a bit about my low dosage. I'm now looking at a daily total of 1800 once we reach that point. Maybe I'll stop falling down all the time now. The muscle seizures long ago surpassed spasms.
Said that for my condition, muscle strength was good, once I could force my body to resist the pushing and pulling. Of course, I have no coordination or balance whatsoever. They just won't listen to what my brain is telling muscles and nerves to do.
Multiple referrals and appointments made.
Tentative initial diagnosis on top of the usual, Peripheral Neuropathy. Just consider that just a generic "We don't know what's wrong yet," but he agreed that something was very wrong with my nervous system. Noted the "to rule out MS" scribbled next to name on sign-in info.
I had blood drawn today for 9 different tests.
Next Friday, I have an MRI and full dye-injection contrast MRI of my skull.
That next Monday, full dye-injection contrast of my entire spine.
That Wednesday, nerve enduction and possible EMG.
I'm not a Pooka, I'm a medical guinea pig.
He ran out of juice.
Ah, Laffy Taffy. Inane, and yet so accurate. Welcome to my day.
Neurologist appointment, check. Note on check-in that I had lost another 3 or 4 pounds, groovy.
Poked, prodded, stuck, forked, reflexed, pushed, pulled, teetered, wobbled, and generally abused in every basic diagnostic way. Tuning forks are fun on the side that works, marching fire ants on the bad one. Wee me. Nasty little pokesy things to test sensation SUCK. Or stick. Whatever.
RSD diagnosis fully confirmed, forehead to fingertips, forehead to knee on my right side.
Fibro ... is actually an Iffy now.
Immediately ruled out my medications as being a cause. One more scratched off the list.
Doc does a few tests, takes a look at my meds, has kittens over the amount of Neurontin. We're not doubling it. We're not tripling it (well, we are ... for a week). He ranted and muttered a bit about my low dosage. I'm now looking at a daily total of 1800 once we reach that point. Maybe I'll stop falling down all the time now. The muscle seizures long ago surpassed spasms.
Said that for my condition, muscle strength was good, once I could force my body to resist the pushing and pulling. Of course, I have no coordination or balance whatsoever. They just won't listen to what my brain is telling muscles and nerves to do.
Multiple referrals and appointments made.
Tentative initial diagnosis on top of the usual, Peripheral Neuropathy. Just consider that just a generic "We don't know what's wrong yet," but he agreed that something was very wrong with my nervous system. Noted the "to rule out MS" scribbled next to name on sign-in info.
I had blood drawn today for 9 different tests.
Next Friday, I have an MRI and full dye-injection contrast MRI of my skull.
That next Monday, full dye-injection contrast of my entire spine.
That Wednesday, nerve enduction and possible EMG.
I'm not a Pooka, I'm a medical guinea pig.
Thursday, January 23, 2003
Fall down, go boom
My bad leg stopped working in mid-step. Just quit. Threw me sideways into the corner of the Things' doorway. Side of head and my right arm took the full impact.
Last thing I remember is thinking "Fuck, that HURT!"
I don't know how long I was knocked out. But my right arm was caught under my head, and all of the blood on my hand was dry. I figure I was out cold for a good five minutes.
Woke up to Thing 1 crying and tapping me in the head. "Mama, do I need to call 911? Mommy, please wake up." Somehow she found my cellphone and the charger to call DG. I have no idea what woke her up. Instinct, maybe. Happened too fast for me to scream.
Haven't been this nauseous from an injury since I got thrown off a horse. Really dizzy. Shaky. Felt frozen for hours. Took every blanket on the bed and then some to stop the shivering.
Top to bottom.
Line from right temple to jaw. Top cartilege hole now big enough for 3 earrings. The one in it had to be cut off. Back to it is still missing. Stone fell out because the prongs were too busy cutting into my ear. Nurse Voodoo assisted the removal procedure. Ear is really swollen. Lobe enlarged and a small cut there.
He also held my hand while DG cleaned it. Ow.
Thank you, Will.
Right arm. This is the bad one. I'm pretty sure it hit the wall first. Shoulder joint throbs and normal motion is not only painful, but nauseating. Swollen. Line of knife-edge pain down outside of arm along tricep. Possible cracked bone. Trying to wait it out in hopes of being able to move better. It is COLD here, and I can't move my arm to get dressed. Can't type with it either.
Right knee. Actually the best of the lot. I'm not sure what I hit with it. Skin is missing, like a rug burn. Hurts more than the impact bruise under it. Maybe it just kept folding and I landed on it. Puffy, but I can at least hobble with the cane.
Don't worry, Heidi. I'll get you pictures when the bruises finish blooming.
Ow. Ow.
Last thing I remember is thinking "Fuck, that HURT!"
I don't know how long I was knocked out. But my right arm was caught under my head, and all of the blood on my hand was dry. I figure I was out cold for a good five minutes.
Woke up to Thing 1 crying and tapping me in the head. "Mama, do I need to call 911? Mommy, please wake up." Somehow she found my cellphone and the charger to call DG. I have no idea what woke her up. Instinct, maybe. Happened too fast for me to scream.
Haven't been this nauseous from an injury since I got thrown off a horse. Really dizzy. Shaky. Felt frozen for hours. Took every blanket on the bed and then some to stop the shivering.
Top to bottom.
Line from right temple to jaw. Top cartilege hole now big enough for 3 earrings. The one in it had to be cut off. Back to it is still missing. Stone fell out because the prongs were too busy cutting into my ear. Nurse Voodoo assisted the removal procedure. Ear is really swollen. Lobe enlarged and a small cut there.
He also held my hand while DG cleaned it. Ow.
Thank you, Will.
Right arm. This is the bad one. I'm pretty sure it hit the wall first. Shoulder joint throbs and normal motion is not only painful, but nauseating. Swollen. Line of knife-edge pain down outside of arm along tricep. Possible cracked bone. Trying to wait it out in hopes of being able to move better. It is COLD here, and I can't move my arm to get dressed. Can't type with it either.
Right knee. Actually the best of the lot. I'm not sure what I hit with it. Skin is missing, like a rug burn. Hurts more than the impact bruise under it. Maybe it just kept folding and I landed on it. Puffy, but I can at least hobble with the cane.
Don't worry, Heidi. I'll get you pictures when the bruises finish blooming.
Ow. Ow.
Monday, March 25, 2002
TGIM
I never thought I would say this: Thank God it's Monday.
Started this post an hour ago. This is as far as I've gotten. Not a great sign.
Another Monday, another week without PT. I'm thinking that's a sign, too, but I'll refrain from actually voicing what I think that sign points to. I'm sure it would just start another fight that I'll back down from and end up feeling worse than ever.
I may look brave to some of you, but the reality is that I honestly and absolutely loathe confrontation. It's part of why I get such lousy medical treatment, because I just sigh and resign myself instead of questioning or arguing. I don't have any support to fight back, and I just can't do it alone unless I am totally fed up and angry over it.
More and more I find myself hoping that they'll finally tell me that I have something terminal, just to get one specific person to act like it matters. It's a pipe dream on that level because I'm honestly not sure that even that news would make it through.
Guess I'm a little blue. I'm sure someone will cheerfully tell me to see a shrink and that I need to up the dosage. If they do, I'll just send them the RSD latter stage photos that I posted semi-privately the other day and ask them if THEY would be Shiny Happy Stupid if they knew they might end up looking like that for the short amount of time they survived.
Yay, RSD increases your risk of sudden fatal heart attacks. This one might kill me after all. And the peasants rejoiced.
I need more caffiene. DG forgot to start a pot this morning. I'm not physically capable of handling fragile glass at the moment, so I guess I'm stuck with soda. Yay. Not.
And as if this weekend hadn't been crappy enough ... My monster will be here next weekend!
DG told me, and I started stuttering again almost immediately. I wonder if I can get out of the visit by pointing out the multiple underlines and heavy blank ink of "***AVOID STRESS!!!!!!!***" that Captain Ed left on my PT paperwork. Not that I've gotten to visit Ed for over a week.
I think I may lock this entry. I'm just too tired to deal with some of the bullshit if I left it open for everybody to read.
Ever been too tired to qualify as tired? Yeah, me too. This is soul-deep. I know it will go away, it always does. It just takes time. Last week was really hard on me both physically and mentally, and now I get to pay the tab for all that "Fun."
I'm trying to get over the urge to entertain in my journal instead of using it to help work through all the things going through my head. It would be easier if I hadn't had so many bad experiences trying to do just that.
It's not that misery loves company, I think that's somewhat incorrect. What misery really wants is for someone to say, "Aw, poor baby, everything is going to be all right." I know that I have definite comfort issues, somewhat pertaining to not getting sympathy, support, or even a reaction to my failing health. Comfort was not something I got as a child, and especially not while I was a teenager when I really needed it the most. I was never told that it was going to be all right. I was told that it was probably my fault. I wasn't told that it was going to get better. I was told that I had screwed this up and was probably going to keep screwing up because I couldn't do anything right. When I knew what I wanted from life, I was told that I was wrong, that *I* could certainly never do that and why should I even bother trying. Comfort and support withdrawn, thank you for playing.
A little voice tells me that I could have gone on ahead and done what I really wanted to do. That little voice has no logic to it, it's just the stubborn little me that won't die. Thank God. Instead, logic pointed out that if I tried to do what I really wanted to do that I would fail spectacularly because it honestly couldn't be done without support, particularly the monetary kind. I ended up shuffled to a college that cost maybe 1500 a semester, TOPS. My baby sister's school was over 18,000 a year. Do the emotional math on that one.
If I'd had the balls and the knowledge of just how unhappy with my life I'd end up, I'd have said "Yeah, Fuck You, lady" a whole lot sooner and ended up on Parris Island with a real chance to reach my own goals.
But, I was short on brass and long on an abusive boyfriend and had had it hammered into my head for so many years that I was supposed to do what THEY wanted me to do and to hell with my own ideas that I was totally incapable of taking the steps to take control of my own life.
Um.
This wasn't how this post was supposed to go. Yay me, and pass the detergent cause I'm airing the dirty laundry.
Knew I shouldn't have mentioned the monster coming up here. "Hi there, I'm your adopted mother and I'm going to totally fuck up your head for the next week and I'm not even there yet!"
Yeah, fuck you, lady.
Started this post an hour ago. This is as far as I've gotten. Not a great sign.
Another Monday, another week without PT. I'm thinking that's a sign, too, but I'll refrain from actually voicing what I think that sign points to. I'm sure it would just start another fight that I'll back down from and end up feeling worse than ever.
I may look brave to some of you, but the reality is that I honestly and absolutely loathe confrontation. It's part of why I get such lousy medical treatment, because I just sigh and resign myself instead of questioning or arguing. I don't have any support to fight back, and I just can't do it alone unless I am totally fed up and angry over it.
More and more I find myself hoping that they'll finally tell me that I have something terminal, just to get one specific person to act like it matters. It's a pipe dream on that level because I'm honestly not sure that even that news would make it through.
Guess I'm a little blue. I'm sure someone will cheerfully tell me to see a shrink and that I need to up the dosage. If they do, I'll just send them the RSD latter stage photos that I posted semi-privately the other day and ask them if THEY would be Shiny Happy Stupid if they knew they might end up looking like that for the short amount of time they survived.
Yay, RSD increases your risk of sudden fatal heart attacks. This one might kill me after all. And the peasants rejoiced.
I need more caffiene. DG forgot to start a pot this morning. I'm not physically capable of handling fragile glass at the moment, so I guess I'm stuck with soda. Yay. Not.
And as if this weekend hadn't been crappy enough ... My monster will be here next weekend!
DG told me, and I started stuttering again almost immediately. I wonder if I can get out of the visit by pointing out the multiple underlines and heavy blank ink of "***AVOID STRESS!!!!!!!***" that Captain Ed left on my PT paperwork. Not that I've gotten to visit Ed for over a week.
I think I may lock this entry. I'm just too tired to deal with some of the bullshit if I left it open for everybody to read.
Ever been too tired to qualify as tired? Yeah, me too. This is soul-deep. I know it will go away, it always does. It just takes time. Last week was really hard on me both physically and mentally, and now I get to pay the tab for all that "Fun."
I'm trying to get over the urge to entertain in my journal instead of using it to help work through all the things going through my head. It would be easier if I hadn't had so many bad experiences trying to do just that.
It's not that misery loves company, I think that's somewhat incorrect. What misery really wants is for someone to say, "Aw, poor baby, everything is going to be all right." I know that I have definite comfort issues, somewhat pertaining to not getting sympathy, support, or even a reaction to my failing health. Comfort was not something I got as a child, and especially not while I was a teenager when I really needed it the most. I was never told that it was going to be all right. I was told that it was probably my fault. I wasn't told that it was going to get better. I was told that I had screwed this up and was probably going to keep screwing up because I couldn't do anything right. When I knew what I wanted from life, I was told that I was wrong, that *I* could certainly never do that and why should I even bother trying. Comfort and support withdrawn, thank you for playing.
A little voice tells me that I could have gone on ahead and done what I really wanted to do. That little voice has no logic to it, it's just the stubborn little me that won't die. Thank God. Instead, logic pointed out that if I tried to do what I really wanted to do that I would fail spectacularly because it honestly couldn't be done without support, particularly the monetary kind. I ended up shuffled to a college that cost maybe 1500 a semester, TOPS. My baby sister's school was over 18,000 a year. Do the emotional math on that one.
If I'd had the balls and the knowledge of just how unhappy with my life I'd end up, I'd have said "Yeah, Fuck You, lady" a whole lot sooner and ended up on Parris Island with a real chance to reach my own goals.
But, I was short on brass and long on an abusive boyfriend and had had it hammered into my head for so many years that I was supposed to do what THEY wanted me to do and to hell with my own ideas that I was totally incapable of taking the steps to take control of my own life.
Um.
This wasn't how this post was supposed to go. Yay me, and pass the detergent cause I'm airing the dirty laundry.
Knew I shouldn't have mentioned the monster coming up here. "Hi there, I'm your adopted mother and I'm going to totally fuck up your head for the next week and I'm not even there yet!"
Yeah, fuck you, lady.
Tuesday, February 26, 2002
Just skip this post.
Why do I insist on wanting to know more? Is it out of the hope that someone somewhere will say something better? That someone will give me some hope on this?
I feel pathetic right now. This is just ... overwhelming. Really. And it's a train wreck because I can't make myself walk away and stop reading it. I'm posting it for me, and I'm not even sure why I'm doing it.
No one else needs to wallow in my pool, but please feel free to push this whale back into the water.
A footnote: "b RSD causes TMJ disease and vice versa. The two usually coexist. Injections or operation for TMJ disease due to RSD aggravates the condition."
Aha!
"The dysfunction changes to dystrophy manifested by edema, hyperhidrosis, neurovascular instability with fluctuation of livedo reticularis and cyanosis - causing change of temperature and color of the skin in matter of minutes. The dystrophic changes also include bouts of hair loss, ridging, dystrophic, brittle and discolored nails, skin rash, subcutaneous bleeding, neurodermatitis, and ulcerative lesions.
It is accompanied by sympathetic dysfunction in all four extremities as well as attacks of headache, vertigo, poor memory, and poor concentration. The spread through paravertebral and midline sympathetic nerves may be vertical, horizontal, or both. "
Shit. I'm apparently closer to the evil 2 than I thought. Well ... the bruising, ridged nails and breast ulcers are accounted for, aren't they?
Oh. Well. That settles it, doesn't it? Apparently the number of stages depends on the one writing the article, and it goes from 3-4 depending on the author. I'm *well* into Stage 2 by most of them and partially into 3. It looks like they split stage three into two levels, one having the most extreme and "final" misery of this damn thing.
"RSD is a definitive chronic pain syndrome called by several different names such as reflex sympathetic dysfunction, (stage I), reflex sympathetic dystrophy (stage II), "
Man, I have to stop reading up on this. This is depressing enough without knowing more.
"RSD is accompanied by a certain degree of inflammation in practically all cases. This inflammation may be in the form of swelling (edema), skin rash (neurodermatitis), inflammatory changes of the skin color (mottled or purplish, bluish or reddish or pale discolorations), tendency for bleeding in the skin, skin becoming easily bruised, inflammation and swelling around the joints as well as in the joints (such as wrists, shoulders, knee, etc.) which can be identified on MRI in later stages, and secondary freezing of the joints.
The fourth component and pre-requisite of diagnosis of RSD is insomnia and emotional disturbance. The fact that the sympathetic sensory nerve fibers carrying the sympathetic pain and impulse up to the brain terminate in the part of the brain called "limbic system". This limbic (marginal) system which is positioned between the old brain (brainstem) and the new brain (cerebral hemispheres) is mainly located over the temporal and frontal lobes of the brain. The disturbance of function of these parts of the brain results in insomnia, agitation, depression, irritability, and disturbance of judgment. Insomnia is an integral part of an untreated RSD. So are problems of depression, irritability and agitation. "
And ...
"This can be in the form of flexion deformity of the extremity, difficulty with walking, flexor withdrawal of the muscles of the extremity, and lumbar and cervical paraspinal spasm. As a result, the patient develops muscle tension headaches, as well as spread of the muscle spasm to the facial muscles with resultant stress on the temporomandibular joint (TMJ) and severe pain and spasm around the TMJ.
With passage of time, the same phenomenon results in chronic trauma to the TMJ as well as clinching of the teeth and trauma to the teeth. The patient develops severe pain in the distribution of trigeminal nerve (sensory nerve for the face) and develops moderate migrainous vascular headaches (trigeminal vascular headaches). In later stages of RSD the immune system becomes disturbed, and the patient develops poor oral hygiene and dental deterioration.
Long-standing unilateral (one sided) spasm of cervical paraspinal muscles causes increased input of pain into the upper portion of the cervical spinal cord. As a result, a referred pain develops with resultant facial pain and secondary muscle spasm around the TMJ and the jaw. The same referred pain causes migraine headaches, TMJ pain and chronic stress on the teeth with dental deterioration"
Can someone please explain to me how every single doctor until now MISSED all of this?
Look at all the fun of the final stage!
1. Failure of the immune system, reduction of helper T-cell lymphocytes and elevation of killer T-cell lymphocytes.
2. Intractable hypertension changes to orthostatic hypotension.
3. Intractable generalized edema involving the abdomen, pelvis, lungs, and extremities.
4. Ulcerative skin lesions which may respond to treatment with I.V. Mannitol, I.V. Immunoglobulin, and ACTH treatments.Calcium channel blockers such as Nifedipine may be effective in treatment.
5. High risks of cancer and suicide are increased.
6. Multiple surgical procedures seem to be precipitating factors for development of stage IV.
RSD will leave significant residuals and will stay with the patient for the rest of their life under the following conditions:
1. Misdiagnosis.
2. Delayed diagnosis after two years and longer.
3. Additional trauma due to surgical procedures at the area involved with RSD (e.g., "tarsal tunnel", "carpal tunnel" surgery "rotator cuff tear" surgery).
4. Prolonged improper treatments such as ice application, inactivity, abuse of narcotics and benzodiazepans, etc.
5. Sympathectomy, amputation, or insertion of a needle in the area of scar of RSD for injections, blocks, or other purposes.
6. Prolonged litigation with resultant emotional aggravation and delay in treatment.
All right. This is me just walking away. No more.
The hard part of the cold front has just hit, so I'm gonna crawl into bed and pretend I'm not freezing and that my hands aren't starting to burn and swell despite the meds.
I feel pathetic right now. This is just ... overwhelming. Really. And it's a train wreck because I can't make myself walk away and stop reading it. I'm posting it for me, and I'm not even sure why I'm doing it.
No one else needs to wallow in my pool, but please feel free to push this whale back into the water.
A footnote: "b RSD causes TMJ disease and vice versa. The two usually coexist. Injections or operation for TMJ disease due to RSD aggravates the condition."
Aha!
"The dysfunction changes to dystrophy manifested by edema, hyperhidrosis, neurovascular instability with fluctuation of livedo reticularis and cyanosis - causing change of temperature and color of the skin in matter of minutes. The dystrophic changes also include bouts of hair loss, ridging, dystrophic, brittle and discolored nails, skin rash, subcutaneous bleeding, neurodermatitis, and ulcerative lesions.
It is accompanied by sympathetic dysfunction in all four extremities as well as attacks of headache, vertigo, poor memory, and poor concentration. The spread through paravertebral and midline sympathetic nerves may be vertical, horizontal, or both. "
Shit. I'm apparently closer to the evil 2 than I thought. Well ... the bruising, ridged nails and breast ulcers are accounted for, aren't they?
Oh. Well. That settles it, doesn't it? Apparently the number of stages depends on the one writing the article, and it goes from 3-4 depending on the author. I'm *well* into Stage 2 by most of them and partially into 3. It looks like they split stage three into two levels, one having the most extreme and "final" misery of this damn thing.
"RSD is a definitive chronic pain syndrome called by several different names such as reflex sympathetic dysfunction, (stage I), reflex sympathetic dystrophy (stage II), "
Man, I have to stop reading up on this. This is depressing enough without knowing more.
"RSD is accompanied by a certain degree of inflammation in practically all cases. This inflammation may be in the form of swelling (edema), skin rash (neurodermatitis), inflammatory changes of the skin color (mottled or purplish, bluish or reddish or pale discolorations), tendency for bleeding in the skin, skin becoming easily bruised, inflammation and swelling around the joints as well as in the joints (such as wrists, shoulders, knee, etc.) which can be identified on MRI in later stages, and secondary freezing of the joints.
The fourth component and pre-requisite of diagnosis of RSD is insomnia and emotional disturbance. The fact that the sympathetic sensory nerve fibers carrying the sympathetic pain and impulse up to the brain terminate in the part of the brain called "limbic system". This limbic (marginal) system which is positioned between the old brain (brainstem) and the new brain (cerebral hemispheres) is mainly located over the temporal and frontal lobes of the brain. The disturbance of function of these parts of the brain results in insomnia, agitation, depression, irritability, and disturbance of judgment. Insomnia is an integral part of an untreated RSD. So are problems of depression, irritability and agitation. "
And ...
"This can be in the form of flexion deformity of the extremity, difficulty with walking, flexor withdrawal of the muscles of the extremity, and lumbar and cervical paraspinal spasm. As a result, the patient develops muscle tension headaches, as well as spread of the muscle spasm to the facial muscles with resultant stress on the temporomandibular joint (TMJ) and severe pain and spasm around the TMJ.
With passage of time, the same phenomenon results in chronic trauma to the TMJ as well as clinching of the teeth and trauma to the teeth. The patient develops severe pain in the distribution of trigeminal nerve (sensory nerve for the face) and develops moderate migrainous vascular headaches (trigeminal vascular headaches). In later stages of RSD the immune system becomes disturbed, and the patient develops poor oral hygiene and dental deterioration.
Long-standing unilateral (one sided) spasm of cervical paraspinal muscles causes increased input of pain into the upper portion of the cervical spinal cord. As a result, a referred pain develops with resultant facial pain and secondary muscle spasm around the TMJ and the jaw. The same referred pain causes migraine headaches, TMJ pain and chronic stress on the teeth with dental deterioration"
Can someone please explain to me how every single doctor until now MISSED all of this?
Look at all the fun of the final stage!
1. Failure of the immune system, reduction of helper T-cell lymphocytes and elevation of killer T-cell lymphocytes.
2. Intractable hypertension changes to orthostatic hypotension.
3. Intractable generalized edema involving the abdomen, pelvis, lungs, and extremities.
4. Ulcerative skin lesions which may respond to treatment with I.V. Mannitol, I.V. Immunoglobulin, and ACTH treatments.Calcium channel blockers such as Nifedipine may be effective in treatment.
5. High risks of cancer and suicide are increased.
6. Multiple surgical procedures seem to be precipitating factors for development of stage IV.
RSD will leave significant residuals and will stay with the patient for the rest of their life under the following conditions:
1. Misdiagnosis.
2. Delayed diagnosis after two years and longer.
3. Additional trauma due to surgical procedures at the area involved with RSD (e.g., "tarsal tunnel", "carpal tunnel" surgery "rotator cuff tear" surgery).
4. Prolonged improper treatments such as ice application, inactivity, abuse of narcotics and benzodiazepans, etc.
5. Sympathectomy, amputation, or insertion of a needle in the area of scar of RSD for injections, blocks, or other purposes.
6. Prolonged litigation with resultant emotional aggravation and delay in treatment.
All right. This is me just walking away. No more.
The hard part of the cold front has just hit, so I'm gonna crawl into bed and pretend I'm not freezing and that my hands aren't starting to burn and swell despite the meds.
Saturday, February 23, 2002
Well. So. Now what?
Finally got some sleep. A little more clear-headed today.
While the drugs didn't put me to sleep, once I got there, I *stayed* asleep for a change. Woke up and got up without much more than the usual "omigod I have to move now" aching. No sign of drug hangover after beginning dose of Neurontin.
So busy being in shock yesterday over the diagnosis that I pretty much forgot to mention everything that did happen.
Nerve damage in my left hand is confirmed now. The good news is that nerves can regenerate, if they have a chance to stop being damaged. Therapy and the new meds might give me a chance to be able to hold a pen again.
My Raynaud's (which fibro can mimic) is actual Raynaud's and relatively severe. It's a problem with capillaries not doing their job right, so blood flow to extremities can be limited. Cold aggravates it something awful -- just holding a cold can of soda can spark it -- so one of the main treatments is to make sure the extremities stay warm. Gloves and socks, man.
I need to find gloves that work with it AND the RSD. So here's what I'm looking for, if you stumble across them. I need a glove without thick seams in the fingers or no fingers at all, rather like the arthritis gloves with no fingers, that don't stop at the wrist. I need ones that go to mid-forearm at least. Just cutting the fingers out of long gloves won't work because the seams will still get in the way of typing and other fine motor skill activities.
My FMS is actually relatively minor. Yes, I do have reaction in almost every trigger point when tested, but it's the RSD that really screws me over on pain. The IBS is really the worst of the fibro effects for me.
Knowing what part of the fog is and isn't fibro is easier to tell now. Now that I KNOW what to look for, I have a good idea of which is currently making me STOOPID, FMS or RSD. Fibro is more of a general ditzy fog with the blank stares and mild forgetfulness.
It's the RSD that makes me completely unable to parse and understand things sometimes -- like being able to file away and recall small details. Not being able to remember the LJ cut-text code, no matter how many times I look it up, is one of them.
RSD is usually linked to some sort of trauma (Reflex Sympathetic -- like post-traumatic stress, this attacks the nervous system). Surgeries can do it as well as injuries. Considering how many surgeries I had in a VERY short span, it's possible that sparked it. We know that I have some weird strain on my neurological system anyway. Between the Cubital Tunnel, the nerve damage in my hand, and the weird injuries linked to nerves and capilliary disfunction in my feet (the little weird bone infection in my foot spawned by them and I can't even remember what it was called anymore), it's not real surprising.
However, RSD usually manifests in the single, main traumatized limb. I have RSD, quite pronounced, in all four limbs, plus my head -- I do the weird swelling blotchy burn on my face and neck as well. RSD can spread in time across the body to other limbs if uncontrolled like mine has been.
But I didn't think about it until we'd left the doctor's office and DG brought it up. About 13 years ago or so, I had a really bad riding accident. A friend of mine and I were out on her horses and had to cross a road to get to the next field. Like dumbasses, we rode across it (two lane asphalt) instead of leading the horses. A car full of frat dicks drove by and honked.
The honk spooked my mount. I was thrown backwards off the horse, my right hand tangled in the reins. I hit the asphalt head-first. Knocked me out for a short time. Broke two ribs, my pinky (from the reins) and had one hell of a concussion. Roo said that she honestly didn't expect me to be alive at all. She said that when I hit, my head made the wet "pumpkin drop" splatting sound.
Direct trauma. Head, neck, spine. It could explain everything, including some of the more extreme memory damage. All my headaches, the migraines just getting worse, the dizziness that I've lived with for years, all of it.
It explains why none of the usual suggestions of causes and treatments haven't worked.
It explains why things like Flexeril and narcotic meds don't work. My brain doesn't process them correctly. It explains why my trembling is SO bad, why the muscles seize an I lose control of them.
Hell, I fell out of the computer chair last night when my leg seized. I hadn't had one that bad in a while. Total loss of control so bad that it literally threw me out of the chair with no chance to stop it before I hit the floor.
We'll never know what brought it on for sure. I do know that the splotchies and burning did NOT show up until after the accident, around the time that DG and I married. I've done it since we got together, which was after the fall. I don't remember it ever happening before.
It has also been manifesting in my face during that time -- which is why they always suspected lupus but I always tested negative. I get the butterfly rash, raised and puffy and red. But it's the RSD.
I am going to ask, once we get the therapy started and insurance is caught up with the program, for an MRI. It's possible that it might tell us more and help us figure out how close I am to the danger zone of stage two to three.
I don't like to lose. Liya and I have that much in common. I didn't give in when the doc told me I WOULD lose the use of my left arm and hand without surgery. I said Let's Do it without even thinking hard. Fix it.
And after the surgery, I fought to get it back. My recovery was so spectacular that I didn't have to endure the months of therapy to bring my hand back to full. I had regained full range of motion in my arm by the second visit after the staples were taken out.
If it means that half of my day is spent in therapy to try to force the RSD into remission, so be it. I'm not fool enough to think that it won't come back. I've got too much else wrong with my body, and the first new trauma can and probably will set it off all over again and then I get to repeat the therapy.
But I will not let it win.
I may be a mouse, but I'm a damned stubborn mouse.
While the drugs didn't put me to sleep, once I got there, I *stayed* asleep for a change. Woke up and got up without much more than the usual "omigod I have to move now" aching. No sign of drug hangover after beginning dose of Neurontin.
So busy being in shock yesterday over the diagnosis that I pretty much forgot to mention everything that did happen.
Nerve damage in my left hand is confirmed now. The good news is that nerves can regenerate, if they have a chance to stop being damaged. Therapy and the new meds might give me a chance to be able to hold a pen again.
My Raynaud's (which fibro can mimic) is actual Raynaud's and relatively severe. It's a problem with capillaries not doing their job right, so blood flow to extremities can be limited. Cold aggravates it something awful -- just holding a cold can of soda can spark it -- so one of the main treatments is to make sure the extremities stay warm. Gloves and socks, man.
I need to find gloves that work with it AND the RSD. So here's what I'm looking for, if you stumble across them. I need a glove without thick seams in the fingers or no fingers at all, rather like the arthritis gloves with no fingers, that don't stop at the wrist. I need ones that go to mid-forearm at least. Just cutting the fingers out of long gloves won't work because the seams will still get in the way of typing and other fine motor skill activities.
My FMS is actually relatively minor. Yes, I do have reaction in almost every trigger point when tested, but it's the RSD that really screws me over on pain. The IBS is really the worst of the fibro effects for me.
Knowing what part of the fog is and isn't fibro is easier to tell now. Now that I KNOW what to look for, I have a good idea of which is currently making me STOOPID, FMS or RSD. Fibro is more of a general ditzy fog with the blank stares and mild forgetfulness.
It's the RSD that makes me completely unable to parse and understand things sometimes -- like being able to file away and recall small details. Not being able to remember the LJ cut-text code, no matter how many times I look it up, is one of them.
RSD is usually linked to some sort of trauma (Reflex Sympathetic -- like post-traumatic stress, this attacks the nervous system). Surgeries can do it as well as injuries. Considering how many surgeries I had in a VERY short span, it's possible that sparked it. We know that I have some weird strain on my neurological system anyway. Between the Cubital Tunnel, the nerve damage in my hand, and the weird injuries linked to nerves and capilliary disfunction in my feet (the little weird bone infection in my foot spawned by them and I can't even remember what it was called anymore), it's not real surprising.
However, RSD usually manifests in the single, main traumatized limb. I have RSD, quite pronounced, in all four limbs, plus my head -- I do the weird swelling blotchy burn on my face and neck as well. RSD can spread in time across the body to other limbs if uncontrolled like mine has been.
But I didn't think about it until we'd left the doctor's office and DG brought it up. About 13 years ago or so, I had a really bad riding accident. A friend of mine and I were out on her horses and had to cross a road to get to the next field. Like dumbasses, we rode across it (two lane asphalt) instead of leading the horses. A car full of frat dicks drove by and honked.
The honk spooked my mount. I was thrown backwards off the horse, my right hand tangled in the reins. I hit the asphalt head-first. Knocked me out for a short time. Broke two ribs, my pinky (from the reins) and had one hell of a concussion. Roo said that she honestly didn't expect me to be alive at all. She said that when I hit, my head made the wet "pumpkin drop" splatting sound.
Direct trauma. Head, neck, spine. It could explain everything, including some of the more extreme memory damage. All my headaches, the migraines just getting worse, the dizziness that I've lived with for years, all of it.
It explains why none of the usual suggestions of causes and treatments haven't worked.
It explains why things like Flexeril and narcotic meds don't work. My brain doesn't process them correctly. It explains why my trembling is SO bad, why the muscles seize an I lose control of them.
Hell, I fell out of the computer chair last night when my leg seized. I hadn't had one that bad in a while. Total loss of control so bad that it literally threw me out of the chair with no chance to stop it before I hit the floor.
We'll never know what brought it on for sure. I do know that the splotchies and burning did NOT show up until after the accident, around the time that DG and I married. I've done it since we got together, which was after the fall. I don't remember it ever happening before.
It has also been manifesting in my face during that time -- which is why they always suspected lupus but I always tested negative. I get the butterfly rash, raised and puffy and red. But it's the RSD.
I am going to ask, once we get the therapy started and insurance is caught up with the program, for an MRI. It's possible that it might tell us more and help us figure out how close I am to the danger zone of stage two to three.
I don't like to lose. Liya and I have that much in common. I didn't give in when the doc told me I WOULD lose the use of my left arm and hand without surgery. I said Let's Do it without even thinking hard. Fix it.
And after the surgery, I fought to get it back. My recovery was so spectacular that I didn't have to endure the months of therapy to bring my hand back to full. I had regained full range of motion in my arm by the second visit after the staples were taken out.
If it means that half of my day is spent in therapy to try to force the RSD into remission, so be it. I'm not fool enough to think that it won't come back. I've got too much else wrong with my body, and the first new trauma can and probably will set it off all over again and then I get to repeat the therapy.
But I will not let it win.
I may be a mouse, but I'm a damned stubborn mouse.
Pretending to be
Just me, Pretending To Be.
Well. Nothing has really changed. Really.
I didn't just find out that I have something terminal, that I'll finally get lucky and the miserable pain will actually get to end -- how's that for a silver lining, but no.
I finally have a diagnosis that EVERYONE will take seriously on top of other Bad Things. The words "possible remission if we've reached it in time" are scary.
BUT Talk about no bloody respect. No, it can't be nifty and KILL me or anything, no, it's happy with just MAIMING my fat white ass and letting me go. Like branding a fucking cow, here's your wheelchair, mooooooooove along.
"Might as well put a potato on a string and drag it through South Boston ..."
Nothing has changed. I'm still in the same pain I was. I'm not any more fragile, I'm not going to suddenly crack and go climb a clock tower (face it, I couldn't make it up ten steps) or drop dead.
I'm still me, for whatever that's worth.
God has seen fit to once again prove to me, however, that not only does he have a really really sadistic sense of humour, but he really likes to draaaaaaag the joke out.
I have Four, count them, Four conditions that will not just up and vanish. Asthma is fickle. Fibro has No Cure. Raynaud's has no cure, plus the groovy possibility of bodily dismemberment -- call the gang, green is here. RSD can take all four of my limbs away from me, eat away at my brain and leave me as some sarcastic fat chick in a wheelchair with cybernetic drug pumps stashed in her body.
They'll push me and stab me and burn me and scar me until something ELSE finally makes me drop dead. How @$&*#$ ironic.
Who the @#$*& comes up with this? What do they do, have some sort of Predestination Bingo Night, Winner #$#*& takes all?
Coldsmoke also wants to know why the same doofus that cooked up these hairbrained plot twists of mayhem had to sink the final nail in the coffin with blue balls.
BUT WAIT, THERE'S MORE!
Because you don't even get a coffin, in fact, you just might live forever (or at least it will seem that way) because you're going to 112, tooling around in your little wheelchair cybercoach, and some fat bastard in a bus is going to run your ass down just as you finally beat that very boss in ....
Aw, game over.
Uh. Shit. This was not where this post was meant to go, but there it is.
I never really contacted with the denial stage here. I went from relieved to stunned, to borderline panic to bloody annoyance and finally to generally taking the whole thing in with the same sarcastic crap that's seen me through the last thirty years and seems determined to drag me kicking and screaming through the next thirty more.
If you got to laugh -- or at least crack a grin, yes, you the Doo of Voo -- then I guess my real work here is done.
And until that time when the thundering grey dog comes bearing down on your ass with all the forces of heaven and hell behind it and you're looking for a port in any storm and not even God appears to be listening, you just keep your hand on the grip because when you're facing The Man at last, you'll know he's finally played his last card. You just do what old Jack Burton does ...
Oh come on, what? Do you want to live forever?
I'm Channeling Me, Pretending To Be
pooka who would like to point out to the world at large that SHE IS STILL FREAKING AWAKE!
Well. Nothing has really changed. Really.
I didn't just find out that I have something terminal, that I'll finally get lucky and the miserable pain will actually get to end -- how's that for a silver lining, but no.
I finally have a diagnosis that EVERYONE will take seriously on top of other Bad Things. The words "possible remission if we've reached it in time" are scary.
BUT Talk about no bloody respect. No, it can't be nifty and KILL me or anything, no, it's happy with just MAIMING my fat white ass and letting me go. Like branding a fucking cow, here's your wheelchair, mooooooooove along.
"Might as well put a potato on a string and drag it through South Boston ..."
Nothing has changed. I'm still in the same pain I was. I'm not any more fragile, I'm not going to suddenly crack and go climb a clock tower (face it, I couldn't make it up ten steps) or drop dead.
I'm still me, for whatever that's worth.
God has seen fit to once again prove to me, however, that not only does he have a really really sadistic sense of humour, but he really likes to draaaaaaag the joke out.
I have Four, count them, Four conditions that will not just up and vanish. Asthma is fickle. Fibro has No Cure. Raynaud's has no cure, plus the groovy possibility of bodily dismemberment -- call the gang, green is here. RSD can take all four of my limbs away from me, eat away at my brain and leave me as some sarcastic fat chick in a wheelchair with cybernetic drug pumps stashed in her body.
They'll push me and stab me and burn me and scar me until something ELSE finally makes me drop dead. How @$&*#$ ironic.
Who the @#$*& comes up with this? What do they do, have some sort of Predestination Bingo Night, Winner #$#*& takes all?
Coldsmoke also wants to know why the same doofus that cooked up these hairbrained plot twists of mayhem had to sink the final nail in the coffin with blue balls.
BUT WAIT, THERE'S MORE!
Because you don't even get a coffin, in fact, you just might live forever (or at least it will seem that way) because you're going to 112, tooling around in your little wheelchair cybercoach, and some fat bastard in a bus is going to run your ass down just as you finally beat that very boss in ....
Aw, game over.
Uh. Shit. This was not where this post was meant to go, but there it is.
I never really contacted with the denial stage here. I went from relieved to stunned, to borderline panic to bloody annoyance and finally to generally taking the whole thing in with the same sarcastic crap that's seen me through the last thirty years and seems determined to drag me kicking and screaming through the next thirty more.
If you got to laugh -- or at least crack a grin, yes, you the Doo of Voo -- then I guess my real work here is done.
And until that time when the thundering grey dog comes bearing down on your ass with all the forces of heaven and hell behind it and you're looking for a port in any storm and not even God appears to be listening, you just keep your hand on the grip because when you're facing The Man at last, you'll know he's finally played his last card. You just do what old Jack Burton does ...
Oh come on, what? Do you want to live forever?
I'm Channeling Me, Pretending To Be
pooka who would like to point out to the world at large that SHE IS STILL FREAKING AWAKE!
Friday, February 22, 2002
Take 200 of these, and don't call me
I've seen gourmet recipes shorter than the instructions on my new meds.
Prednisone to start to control the RSD. Yum. Nasty foul stuff. 60 tabs, well, at least I'll be breathing well. Label print was switch to a font smaller than the "X refills remaining" text to fit it all on.
Excuse me, but I'd like to make claim that I deserve to use the F word here, thank you.
FUCK! The damn bottle Prednisone has a worse coating than the dose-pak ... ie, it powders slightly in mere movement, so when you take one ... WHAM, you gotta shave your tongue and it feels like the floor of a NY movie theater. This is gonna be a LONG three weeks.
I'm currently considering Death as an option.
Itty Bitty Elavils to up me from 75 to 100. She was Not Happy with the wussy Elavil dosage at all, especially after finding out how long I'd been stuck there with it not helping. She gave me enough Elavil at 25 mg that I can take 125 if the 100 doesn't work after a few days.
I also got ... more Zanaflex (YAY, SAMPLES!) -- which Cigna should cover automatically because RSD is a seizure-class disorder.
And the crowning touch for my nighttime digestion ... Neurontin. Starting at 100, and working up to 200, then 300, all in itty bitty precise directions on the itty bitty label.
Dude, I CAN'T fog and forget this. She is SO cool to cover my ass like that.
Course, it doesn't change the fact that YES, I AM still awake!
Or that it still hurts to move. Or that it still hurts to NOT move.
But ... having the spasm/seizure swelling splotchy scarlet and purple Pooka furnace kick in RIGHT THERE at the office ... is Priceless.
For everything else, there's a really big hammer.
Take one as needed.
Prednisone to start to control the RSD. Yum. Nasty foul stuff. 60 tabs, well, at least I'll be breathing well. Label print was switch to a font smaller than the "X refills remaining" text to fit it all on.
Excuse me, but I'd like to make claim that I deserve to use the F word here, thank you.
FUCK! The damn bottle Prednisone has a worse coating than the dose-pak ... ie, it powders slightly in mere movement, so when you take one ... WHAM, you gotta shave your tongue and it feels like the floor of a NY movie theater. This is gonna be a LONG three weeks.
I'm currently considering Death as an option.
Itty Bitty Elavils to up me from 75 to 100. She was Not Happy with the wussy Elavil dosage at all, especially after finding out how long I'd been stuck there with it not helping. She gave me enough Elavil at 25 mg that I can take 125 if the 100 doesn't work after a few days.
I also got ... more Zanaflex (YAY, SAMPLES!) -- which Cigna should cover automatically because RSD is a seizure-class disorder.
And the crowning touch for my nighttime digestion ... Neurontin. Starting at 100, and working up to 200, then 300, all in itty bitty precise directions on the itty bitty label.
Dude, I CAN'T fog and forget this. She is SO cool to cover my ass like that.
Course, it doesn't change the fact that YES, I AM still awake!
Or that it still hurts to move. Or that it still hurts to NOT move.
But ... having the spasm/seizure swelling splotchy scarlet and purple Pooka furnace kick in RIGHT THERE at the office ... is Priceless.
For everything else, there's a really big hammer.
Take one as needed.
Welcome to the Last Day of the ... no, wait
Okay. Some days you really wonder why you crawled out of bed. Especially when there's a doctor's appointment involved.
Yes, the Pooka has Fibromyalgia. It's a "minor concern" right now ...
Think and chew on THAT phrase for a minute.
Yes, I have confirmed Raynaud's Phenomenon, Primary -- severe. "Why in God's name do you not have socks on your feet, girl?" I got my butt chewed for Birks. Course, DG DID lie to me about how warm it was outside. I knew I had it, and knew it was pretty bad, but even she seemed impressed by the degree. My hands and feet performed their gold medal skate for the doc, doing the whole shebang.
Cuz, um, Raynaud's can cause gangrene and your fingers and toes can rot off if you don't keep them warm enough so the blood will circulate. I'm supposed to wear gloves and socks as long as it's below 70-75. Like, fingertip to elbow gloves to help with ...
This is where I sort of lose things.
The Pooka has RSD. Reflex Sympathetic Dystrophy.
It doesn't get any better than how it sounds right there.
This post gets really long after this, going into details about RSD.
RSD is often progressive. It's also incurable. It can be treated, but many patients (that don't kill themselves, I looooove how the notes point that out -- "Emotional depression developed to such a degree that suicide was the final outcome in many of the cases." -- yeah, nice) end up in wheelchairs, with implanted drug pumps just to make it day to day.
Burning Pain, aching pain, shooting pain, swelling, limited mobility, hyper-sensitivity to slightest touch, withdrawing from commotion, short term memory loss, depression, living on a tight rope between doing too much, causing pain, and doing too little, causing pain, these and many more are symptoms of Reflex Sympathetic Dystrophy Syndrome.
As RSD progresses, the abnormal pain of the sympathetic nervous system has an effect on other areas of the body and can result in total disability as muscles, bones, skin and the autonomic immune system become involved.
The first indication of RSD is prolonged pain usually more severe than the injury. The symptoms are severe burning pain in a localized area, intense sensitivity to temperature and light touch, and a color change to the skin.
There are several stages to RSD, which progress at different rates in different people. Initially, there is swelling and redness in the affected area.
Next, the area becomes blue and cold, with increased pain and stiffness of ligaments and joints, and Osteoporosis may become evident.
Finally, there may be a wasting of affected muscles, contraction of tendons, and a definite withering of the affected limb. In all of the stages, severe chronic pain continues to be a major complaint.
Many patients who are not treated early will experience spread of the disease and this may become a lifelong problem. Even with early treatment this may become a chronic condition.
I wasn't caught early. I'm between Stage One and Stage Two of the syndrome.
Treatment can send RSD into remission. It may subside for years and then recur with a new injury.
There are many other symptoms that an RSD/CRPS patient may have, including movement disorders (difficulty starting movement, increased tone, increased reflexes, tremor, muscle spasms), weakness, fatigue, skin rashes, frequent infections, migraine headaches and others could be found as more data is accumulated.
(Remember my mystery flush and hives? I was going into a flare up. Now I know. And knowing is half the battle. Too bad I'm gonna lose the war.)
CLINICAL SYMPTOMS OF RSD
Pain is the first and primary complaint, described as extremely severe and burning & aching in nature
Swelling and joint tenderness
Loss or diminished motor function
Muscle spasms
Increased sweating
Changes in skin temperature and color
Bone softening - patchy osteoporosis
The disease causes constriction of vertebral arteries resulting in poor circulation to the brain stem, this in turn causes poor focusing of eye muscles, and poor balance, dizziness and migraines.
This constant pain in the limbic system (Frontal and Temporal lobes) causes poor memory, irritability as well as insomnia. Antidepressants such as Trazodone or desipramine and better control of the pain seem to improve these symptoms. This goes along with paravertebral and epidural blocks.
The person suffering may develop abnormal function of the sympathetic system causing constriction of the blood vessels to the brain. When the blood vessels are constricted in the distribution of vertebral arteries in the cervical spine and in the distribution of the blood vessels providing circulation for the brainstem, the person develops attacks of dizziness, white spots, migraines and difficulty focusing with the eyes. All of this is due to the brainstem dysfunction, which has the responsibility of coordinating our eye movements.
Many patients develop hostility towards any individual coming in close proximity, reflex from trying to protect affected hypersensitive limbs from contact.
So.
I get to deal with fibro which is aggravated by the RSD. Mmm, double the symptoms, double the pain, double your FwordI'mstillnotusing fun.
Now if you'll excuse me, I'm going to go indulge in a completely out-of-character screaming fit of hysterics.
.... appends.
NO, wait, there's more! I forgot the one bright point (other than an answer for so much unexplained and ignored symptoms that have been wrong with me for years).
I was told to .... NOT avoid caffeine. Yes, yes, brothers and sisters of the sacred bean. Coffee may actually HELP the Pooka, balancing out all the weirdness that makes me shake and shimmy like a big ole vat of Jello.
No, wait. That was just me trying to put on my jeans. Never mind, carry on.
Yes, the Pooka has Fibromyalgia. It's a "minor concern" right now ...
Think and chew on THAT phrase for a minute.
Yes, I have confirmed Raynaud's Phenomenon, Primary -- severe. "Why in God's name do you not have socks on your feet, girl?" I got my butt chewed for Birks. Course, DG DID lie to me about how warm it was outside. I knew I had it, and knew it was pretty bad, but even she seemed impressed by the degree. My hands and feet performed their gold medal skate for the doc, doing the whole shebang.
Cuz, um, Raynaud's can cause gangrene and your fingers and toes can rot off if you don't keep them warm enough so the blood will circulate. I'm supposed to wear gloves and socks as long as it's below 70-75. Like, fingertip to elbow gloves to help with ...
This is where I sort of lose things.
The Pooka has RSD. Reflex Sympathetic Dystrophy.
It doesn't get any better than how it sounds right there.
This post gets really long after this, going into details about RSD.
RSD is often progressive. It's also incurable. It can be treated, but many patients (that don't kill themselves, I looooove how the notes point that out -- "Emotional depression developed to such a degree that suicide was the final outcome in many of the cases." -- yeah, nice) end up in wheelchairs, with implanted drug pumps just to make it day to day.
Burning Pain, aching pain, shooting pain, swelling, limited mobility, hyper-sensitivity to slightest touch, withdrawing from commotion, short term memory loss, depression, living on a tight rope between doing too much, causing pain, and doing too little, causing pain, these and many more are symptoms of Reflex Sympathetic Dystrophy Syndrome.
As RSD progresses, the abnormal pain of the sympathetic nervous system has an effect on other areas of the body and can result in total disability as muscles, bones, skin and the autonomic immune system become involved.
The first indication of RSD is prolonged pain usually more severe than the injury. The symptoms are severe burning pain in a localized area, intense sensitivity to temperature and light touch, and a color change to the skin.
There are several stages to RSD, which progress at different rates in different people. Initially, there is swelling and redness in the affected area.
Next, the area becomes blue and cold, with increased pain and stiffness of ligaments and joints, and Osteoporosis may become evident.
Finally, there may be a wasting of affected muscles, contraction of tendons, and a definite withering of the affected limb. In all of the stages, severe chronic pain continues to be a major complaint.
Many patients who are not treated early will experience spread of the disease and this may become a lifelong problem. Even with early treatment this may become a chronic condition.
I wasn't caught early. I'm between Stage One and Stage Two of the syndrome.
Treatment can send RSD into remission. It may subside for years and then recur with a new injury.
There are many other symptoms that an RSD/CRPS patient may have, including movement disorders (difficulty starting movement, increased tone, increased reflexes, tremor, muscle spasms), weakness, fatigue, skin rashes, frequent infections, migraine headaches and others could be found as more data is accumulated.
(Remember my mystery flush and hives? I was going into a flare up. Now I know. And knowing is half the battle. Too bad I'm gonna lose the war.)
CLINICAL SYMPTOMS OF RSD
Pain is the first and primary complaint, described as extremely severe and burning & aching in nature
Swelling and joint tenderness
Loss or diminished motor function
Muscle spasms
Increased sweating
Changes in skin temperature and color
Bone softening - patchy osteoporosis
The disease causes constriction of vertebral arteries resulting in poor circulation to the brain stem, this in turn causes poor focusing of eye muscles, and poor balance, dizziness and migraines.
This constant pain in the limbic system (Frontal and Temporal lobes) causes poor memory, irritability as well as insomnia. Antidepressants such as Trazodone or desipramine and better control of the pain seem to improve these symptoms. This goes along with paravertebral and epidural blocks.
The person suffering may develop abnormal function of the sympathetic system causing constriction of the blood vessels to the brain. When the blood vessels are constricted in the distribution of vertebral arteries in the cervical spine and in the distribution of the blood vessels providing circulation for the brainstem, the person develops attacks of dizziness, white spots, migraines and difficulty focusing with the eyes. All of this is due to the brainstem dysfunction, which has the responsibility of coordinating our eye movements.
Many patients develop hostility towards any individual coming in close proximity, reflex from trying to protect affected hypersensitive limbs from contact.
So.
I get to deal with fibro which is aggravated by the RSD. Mmm, double the symptoms, double the pain, double your FwordI'mstillnotusing fun.
Now if you'll excuse me, I'm going to go indulge in a completely out-of-character screaming fit of hysterics.
.... appends.
NO, wait, there's more! I forgot the one bright point (other than an answer for so much unexplained and ignored symptoms that have been wrong with me for years).
I was told to .... NOT avoid caffeine. Yes, yes, brothers and sisters of the sacred bean. Coffee may actually HELP the Pooka, balancing out all the weirdness that makes me shake and shimmy like a big ole vat of Jello.
No, wait. That was just me trying to put on my jeans. Never mind, carry on.
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