Friday, August 08, 2008

Pain and postcards, seizures and a notebook

Last night after posting, my pain increased to the point that even taking the pain pills I was allowed I was unable to sit up, body shaking. So I decided to go to bed, only to find that my heavy night pain pill (which I need to take 30 minutes before sleeping) wasn’t there. Linda was sleeping and my overnight caregiver was in my bedroom. In my bedroom the air conditioner was going because of a heat wave. She couldn’t hear my call for help.

I managed to transfer to my wheelchair, and got to the door. After a number of tries (pain really messes with coordination!) opened the door, calling for help. Linda and my night worker, F., came. They helped me back to my desk chair which has body support. As Linda was going for the pill, a partial seizure, started to spasm in half of my body, flowing from my arm out, up and down.

The pain by this time was so extreme I was trying to stop myself from screaming, from moaning full voice and failing and first the caregiver and then Linda had to try and hold me still. A line of pain, like a lit dynamite fuse ran up my neck and into the lower side of my head. Then, like a grenade going off in a steel box, the back of my head exploded. That apparently turned me into a full Grand Mal (This is where I passed out). And Grand Mal or a Tonic Clonic (or Clonic Tonic, I can never keep them straight) is where your electrical signals have jumped the fence. Only they have not only gotten that part of the brain misfiring, but like a bush fire have spread, signal to signal until they jump to the other hemisphere of the brain, sending the entire brain and the entire body into electrical firings so fast they can’t be replicated.

This means that up to every single muscle in your limbs is individually clenching, releasing, clenching and releasing so fast that your limbs flail about. It apparently catapulted me out of the chair where Linda and the worker where holding me. They tried to get me down on the ground with some of my limbs facing the same way, while the limbs were still going off, flailing. If this type of seizure goes beyond five minutes or if you get repeat seizures again and again you have to go to hospital because you are risking brain damage and/or death. There was, it seems, another seizure after this, and then a period of time, about 50 minutes from the first seizure until I had sufficient control of both sides of my face to swallow the pain pill I was originally looking for (in an earlier attempt at 40 minutes I aspirated the liquid from the straw, meaning it went into my lungs, not the best way to process pain pills).

Because of the repeated seizures Linda said that if I had entered another she would have called 911. Which would have made waking up someplace else (in this case the floor, in THAT case an ambulance) more confusing.

The night care worker gave me the pain pill every four hours through the night. This morning I woke in such extreme pain that though I made it into my chair and got a Poweraid from the fridge, I could not open it in order to take a pain pill, that is how bad my hands were shaking. I couldn’t sit up. Also, when I did manage to sit up to take my blood pressure, my heart was having about 30% or more erratic beats. So I couldn’t do anything but sit there and quiver, shaking in my arms, my hands, my torso, for 40-50 minutes until my care worker came in and opened the bottle for me. She helped me take the pill, stayed with me, as I, pasty faced talked to try and ignore the pain until enough of the edge came off that I could have a clear thought.

Pain wise, I would say the closest I can compare it is when you have a burn from a pan or hot water, which blisters right away. It was like that for my spine, my entire torso and arms, and if I had feeling it would have been that for my legs too. For over 40 minutes, I felt that I was literally on fire. When my care worker tried to grab my arm/hand to steady it for drinking, I passed out a little, from the overload of pain.

Before you ask, my GP will not prescribe any stronger painkiller because he is waiting for the pain specialist. But he forgot to talk to him in the last several weeks and when he called earlier this week found the specialist was on holiday until the 19th, so when the specialist returns, he will book me an appointment. Which will be a month from the 19th, if I am lucky.

After the pain killer kicked in it felt like I had one of those sunburns on my skin where the liquid of white blood cells and mucus forms under your skin, it was so bad, so painful. I could not turn my head to speak, I sometimes just sat. I talked to the worker to distract myself, to make another minute pass. I thought of a friend who said that once her pain reached a certain level she started making plans, if it was at that level in X months, she would kill herself because she couldn’t live like this. On the one hand, I could understand her, on the other, I couldn’t understand how she could wait SIX MONTHS. But then, by afternoon, I had my second wind, my "piss off" attitude and was like, “What, you think pure agonizing PAIN is going to stop me?” I was actually trying to look up 5K and 10K races for this weekend, like Saturday merely on the basis that if I am in so much pain I am screaming ANYWAY, why not get some racing/socializing in?

I was contacted this afternoon by the Epilepsy RN for BC, and found out lots of not great things. That since the seizures seem to be a part of my larger condition, the increase in them (degeneration) is likely not going to be reversed, or eliminated. But that the right drugs might cut the number down (My GP has decided until the specialist Neurologist consults, he is not going to prescribe but wants me to write up a list of all the different types of pain I have). The RN said is a voice of horror, “Your GP SAW you having a seizure in his office and isn’t treating you? But that sounds like they just want to keep watching you to see how many and how many different strokes you have?”

“Yeah, that’s about it.” I said, “And just in case you didn’t know this already, the seizures HURT.” She did know actually.

Well, it seems if they use the wrong drug, my seizures can INCREASE. I am pushing for a drug called Lyrica because it not only acts as an anti-seizure med, basically stopping partials from becoming Grand Mals (this is GOOD!), but is also an anti-nerve pain medication used for all sorts of nerve pain including Fibro (less seizures AND less pain - I am FOR THAT!). The not so good news is that because I have seizures while asleep, I am not supposed (the word “can’t” was used) to sleep alone. Because now the seizures could cause brain damage or death while I am sleeping. Yum!

So I wasn’t really productive today unless thinking or saying, “Oh God let it end!” about a thousand times is productive? So that was the “not great” news.

On the OTHER hand, I did get a present today, one I bought myself online. It is a notebook from the animators of Air TV, and Kanon 2006, and it has sparkles in the hair and lots of cute rabbits, it is 10.5 inches by 8 or so (Kawaii!). While I can’t imagine I am about to write a “pash” diary about how in Bio Class today Sandi flipped her hair and she is SO cool and how come she never notices ME! And then use hearts instead of dots on my I’s, I am sure I will find SOME use for it.

I also worked on postcards which by now people are probably going, “Yeah, we KNOW, you do every day!” Okay, I will put a longer post on my Postcard Project blog but I processed a lot of cards up to stage three in hopes they or many will be ready to head out Saturday! Here is a selection of some of the cards going out. I like the cat in the lower left very much, because not only has he, like most cats taken completely over, but is also complaining about the quality of the tea/coffee he is getting. Just seems very cat like. Also like girl with flute...Linda has a wooden flute.

I also got to play with some new block prints, and now I have a “bloody thumb print” and a train to add to my collection of fun things to put on postcards. Okay, yes, I am a little obsessed with the cards but hey, people seem to like them and if they don’t…well, I am convinced like a form of fungus, the joy of it will start to grow on them.

So ending the day still in immense massive pain BUT worked on 18 postcards, AND did some more work on certain “surprises” I am trying to get done. So that is where I am at. Now I am going to go stare at my notebook for a while and see if the pain drops at all. I sure hope it does!


Tom P. said...

Michel takes Lyrica and it has done wonders for her. Tell your doctors that they are not going to get to heaven by being asses. Their job is to make you as pain free as possible. You are not supposed to be entertainment for them, "Hey, let's see how often we can get the gimp to seize."

Gaina said...

Hmm....obsessed with postcards or being hijacked by face-melting pain ...yeah, in your case an obsession can only be a good thing. ;-)

Lene Andersen said...

Aw, crap, sweetie. That's awful.

Stray thought - any chance the Epilepsy RN could do some magic, pull a few strings and get you in somewhere? She's clearly horrified at your "treatment", so maybe...? I know, grasping at straws, but I had to try.

Love the bloody fingerprint.

abi said...

I mostly don't know how you manage to endure that sort of pain. I sort of do, in that there isn't an acceptable alternative, nor can you get round it; the only way is through. The most severe bout of pain I ever had was period pain, which pales in comparison with your pain. This one was so bad that I couldn't eat the food I had to have before I took any painkillers. I was too uncomfortable to stay still, and too uncomfortable to move. After (maybe) a couple of hours, I caved and took the painkillers on an empty stomach. I couldn't imagine enduring that pain on a regular basis (have taken steps to avoid it happening again. Thank you, God and relevant scientists, for the wonders of modern contraception). Life can't be put completely on hold for large periods of time while you deal with pain, though. I am sending fortifying thoughts your way.

I got another postcard yesterday, which was a lovely surprise. I got myself prepared with cake before I read it; it was too much of a treat to read unprepared. I hope to avoid the joy growing on me like a fungus by enjoying them in the first place. Will that work?

Anonymous said...

I really wonder about your doctor if he can't do anything even after he SAW your seizure ib his office. Come ON, dude, how about, "I'm sending you to a pain specialist and while you're waiting, here's a prescription for something that should help the pain go away."

We got a postcard from you yesterday; where's Neil, indeed.

Ah crap, Youngest child is yellingthat the rsapberries picked yesterday ust fell out of (got bumped out through carelesslness) the fridge. Gotta fly to his aid.
Love and hugs,

FridaWrites said...

Those seizures sound truly awful and scary for everyone. I don't understand why he can't put you on Lyrica or Neurontin for now. For goodness' sake, I got Neurontin easily from the doctor who doesn't prescribe pain med at all for nerve pain (it's used for seizures too), even though my pain, though bad when I asked for it, is probably only a fraction of what you're having--and you have the seizures too! I wish the GP would try something, anything--while I know he wants to wait for the neurologist and pain specialist, in the absence of one, he needs to make a good faith effort to treat you. While I know doctors don't like to treat outside their areas, this gets out of hand sometimes (why, when recognizing I had pneumonia, could my cardiologist not hand me a different antibiotic rather than require me to go back to my GP?).

I've felt suicidal from back pain before except wouldn't because I have kids and I remember that it always improves for a while. If it stopped doing that, I don't know. The doctors often don't see worst condition. I'm not an ER back pain patient, at that point I can't get to the ER. I have the kids, so don't worry, and it's not been that bad postsurgery even on the worst days.

I like the fox stamp. Reading the "End of the Trail" caption on the postcard--what is on the front of that card??

Dawn Allenbach said...

Re seizures: Wow. Just . . . wow.

Re notebook: It's cute. Who cares what you write in it as long as you do.

Re postcards: Yes, we know you work on postcards, but I like hearing about your postcard process.

Anna said...

Don't have abything intelligent to say.....if you were in my country I could volounteer to call your doctor and nag, yell or scream or something. I am good at that.

All I can say I'll pray for you, that phrase for does not mean: Bye, bye heading off, but rather mean: "Fuck there's nothing I can do, so I'll better yell at God."

About seizures.... Jesus.....

Postcards..... well they look very nice! And it is good to have a project! Especially one that brings happiness to others.

JaneB said...

Hi Beth,

Wish you could find a way to transfer some of the pain to your stupid, ass-covering GP, it might make him MOVE.

Love the cat postcard, it's SO cat-like. Yup, they would definitely complain about the coffee - that's part of what they do, all part of the grand plan for world domination... :-)

I hope my name is on the list somewhere for another post-card, they really are little works of art - and of thought.

Hoping the heat wave vanishes and you get some of the cold, rainy 'British style' non-summer we're having!

Lene Andersen said...

p.s. I didn't mean "in" as in getitng you into the neuropsych unit. I meant in to see a decent neurologist so you can get some damn anti-seizure meds.

Neil said...

I was just showing your Dai Boken to the Manga instructor at work, and came across the photos of you in your kimono. I'm struck again by its beauty. Doubly beautiful on you!

Despite bain-searing pain and seizures that make epilepsy look easy, I hope you have moments when you can wear the kimono or at least enjoy owning it.

I brought the chopsticks (from the Bento Box surprise) to work today, and used them with a bit of cole slaw (culinary multiculturism at its best!). THanks again for that marvellous surprise! But the box itself is just too special to risk using. Maye when I have something REALLY special to put in it...

Zen hugs, dear Internet niece,

Donimo said...

Jeezus, girlfriend, you are going through so much. I wish your GP would prescribe the Lyrica for you because it's not like you can just take the required dose right away - you have to build up to it slowly. [insert a bunch of swear words here]

I'm not clear-headed enough to write anything deep here. Just know that I care about you and your blog gives me a lot.

The bloody fingerprint rocks.

Queen Slug said...

I take Neurontin & it's similar to Lyrica. It works wonders on my pain, has gotten rid of my migraines & works as a mild mood stabilizer so all in all it's pretty good. I hope you are able to get on it soon. Is there anyway at all your doc would change his mind & rx it?

Tammy said...

I couldn't imagine pain at that level. I do experience pain, just popped two Darvocets to help deal with it, but...never to that extreme. I'm SO sorry that you go through that. The seizures sound just like a nightmare.
I am very intrigued by your wood blocks. Are they like rubber stamps, or actual wood cuts? The thumbprint is way too cool. You can take your thumbprint and make it into a reindeer too. One year we all put our family thumbprints, drew antlers , eyes, and a cute nose on them and that was our Christmas card. Corny, but cute. I LOVE rubber stamps and have a rather large collection.
My doctor wanted to prescribe Lyrica to me, but I didn't know enough about it and it made me nervous so I turned it down. I had a bad incident with Cymbalta, and never want to go that route again. I know they are different classes of drugs, but now I'm a bit "gun shy" when it comes to prescriptions.
I still can't believe your GP has not done ANYTHING after witnessing the seizure. At least something to help. Are you on Tramadol or Ultram? It is known to increase seizure activity in those prone to it. My aunt was having seizures and they finally discovered that it was the ultram increasing a tendency to have them anyways. She stopped taking, no seizure since she went off them. Sorry..not trying to be nosey, just throwing ideas out there.

Raccoon said...

Sounds like you had a simply marvelous day!*

On the other hand, postcards! Pretty postcards!

(I got another one! Yay! Pretty Sailor Scouts! Yay!)

*note the sarcasm

yanub said...

As you have no doubt surmised, I am convinced that your doctor is suffering from rectal-cranial inversion. Of course he can't prescribe you any antiseizure medication since it's way too dark in their for him to scrawl his name on that tiny prescription pad.

I am slightly confused by the existence of an official epilepsy nurse for BC. Is this a person who works for the epilepsy society, offering some guidance on what to do next? Or does the medical system just suck so hard in BC that there really is only one?

Have you considered getting an intercom so that you can be more clearly heard when everyone else is in another room? You could leave it on when you are alone so you wouldn't have to try to flip switches or press buttons when you are "having a moment".

cheryl g said...

I am feeling the need to kick your GP's ass when I get to Victoria next.

Damn that sounds like the worst round of seizures yet. I hope the pain eases for you.

Shea said...

I think your doctor got his medical license in a cracker jack box, and I am not kidding. Either that or he is just a vile and evil man. In my heart I think he does not believe you. Anyone with a heart just could not do this if they did. Like I said, he's an idiot or just mean.

Elizabeth McClung said...

Tom P: I am glad it works for Michel and I am really hoping it works for me both for seizures AND the pain. I admit that during the worse pain I do have questions in my mind between my treatment and the doctors from south africa put on trial for "human experiments" - yeah, how many times do I have to have a seizure for each doctor before I hit the quota?

Giana: Well, that I choose Postcards as my hold onto the world and rationalism is sort of strange, but yeah, that's what gets me through the pain. For me, if it wasn't for post, some days, some weeks would be unbearable, so I guess, I figure there are others out there and I am tired of being in a society where everyone says it is "someone else's problem" so for me, if someone wants or appreciates a postcard, that is what I will try and do.

Lene: yeah, it wasn't fun - but like I said, it is definately an E-ticket ride. I seem to be taking a tour through all the disabilities so I think developing EDS and arthritis is next (is that even possible?).

The epilespy society IS going to talk to beacon about going in an training thier staff instead of letting them say, "I don't want to go to her, the seizures scare me.", to teach them that they may be scary at first but that is a PERSON underneath and that is what they signed up for under "CARE GIVING"

Yeah, bloody fingerprint is fun!

Abi: Looking back over the last few days, I think I sort of lost my sanity consistantly and I don't know how I did to - what happens when you are screaming and it still hurts so much you are going insane. And then you go insane and it still hurts? I don't know, I guess the minutes passed and I am still here.

Yes, I agree, which is why we take 'birth control' even though not a sperm in the house. That is why people who have to endure the pain of cysts of endometiocis (sic) make me upset, that something hasn't been found to fix that or eliminate the pain.

I agree, life can't be put on hold, but it can seem to be a sort of hazy and distant place becuase you have pain screaming in your ear all the time. Makes it hard to focus.

I think you will likely be fungus free (I say nothing about your walls however, I have lived through the lack of insulation in the UK!), glad you liked the card.

Neil: I agree, I am sort of beyond the point where him saying, "Yes, I can tell you are in pain" seems a comfort, instead it seems like callous cruelty. I hope you enjoy the "where's Neil" - the home game!

Yes, by all means save the raspberries - I wonder if I can convince Linda to get me an umbrella against the sun and we can go pick blackberries?

Frida: I tend to be the TRY ANYTHING, desperation thinking. On the basis that even if it doesn't kick in right away, at least I have the HOPE that I will have less pain in the future, which not prescibing anything just leaves no hope at all.

The same for me, if not for Linda, the drug cabinate or the knife drawer would be so much more tempting. But I have to keep fighting, even when I have given up, becuase SHE believes in me.

As for the front of that postcard - it is vultures picking peices out of a corpse in the sage desert. Nevada has some very ODD marketing for trying to get people to come there.

Dawn: Seizures, yeah, except I usually say, "Oh God!"

Notebook: right now just looking at cute rabbits is enough, but I should write in it and stop giving in to this freaking fatalism, of "what is the point when people will throw it out in a year or so when they clean up your stuff" - cheery aren't I

Postcards: I'm glad, also, for those who like getting them, I am trying to let you know that I am working on the list and your name is coming up soon if not in this weeks batch!

Elizabeth McClung said...

Anna: I hope if I was in your country I wouldn't have a doctor like this!

Yes, I yell at God a bit too. As for the seizures, well, um, at least I don't have to worry about working my way UP to grand mals. It has also made partials and the like simply annoying rather than terrfying - still hurts that day and next though.

Well yes, on postcards, I think it is a better project/obsession than like, Elizabeth's HATE LETTERS - I could be obsessed that way but this is a way which doesn't get me a file in different governments and gives a bit of joy here and there.

Jane B: I am so with you on that one, in fact, I have been trying to figure out a way to transfer the pain and then stop him from giving himself the painkillers so we can all be in pain together, and he can see how fun it is. But then pain make Beth a bit crazy!

Oh yes, you are on the list for postcards, to be sure. I will try and find a cat one for you too - I like cats, becuase the love you, but that doesn't stop them manipulating you to get what they want. I don't know why that appeals to me.

It is Saturday now and actually overcast, so I hope I can go out today!

Neil: Tried to wear it for Luminara, but spent too much time on the wheelchair. I will try to use it though, it is a very nice Yakata.

Well the brain searing bits actually are Epilepsy, which makes me understand now why people who have 3 or 4 seizures like this a day end up having brain surgery to split the two halves of the brain or have the scarred part removed. Brain surgery is FAR less scary than this multiple times a day. honesly I don't know how Carapace does it - I am just weeks, maybe months into this but she is YEARS into it.

Arg, I sent you the bento box to USE, I will have to send you explicit instructions on how to pack a bento box, so you can use it for your lunches, I use mine once a week or so!

Donimo: Exactly, I don't even know until a week or two how much pain or seizure relief it will give, but everything in this city medically seems to take time. And time I do not have.

I'm glad, I hope to start putting up posts about postitive things too sometime, not just pain and "stuff that must be done".

I love the fingerprint!

Queen Slug: Actually, no, becuase he refused for months to give me Neurontin, while one day visiting a neurologist we asked and she just looked at us like, "Why hasn't someone given you this before?" and said, "Yes, of course" and wrote a script, which unfortunately altered my Blood pressure so much that I was passing out sitting up. So had to go off it - but I hear Lyrica has less side effects. The problem with my condition is that I am likely to have side effects that are NOT on the label becuase my autonomic system is just doing whatever it wants that day. So any drug that relies on the autonomic system to work normally will act different.

Tammy: Yeah, pain sucks, at any level, but every time I think I have topped out being in pain, something else happens, I guess cancer patients have the same experience (which is why they are on Fentynal).

I use mostly rubber stamps but only from very select companies or very select stamps because I have such limited hand control - it needs to ink in one press and then leave a good clear impression with just one pressing, no requirements of rolling or double inking or anything technical. So a friend is lending me some and of I guess 800 rubber stamps, I found about 11 I could use. Not that I am picky or anything!

Yeah we should talk different stamps. But the fact that you used bloody fingerprints on your Christmas, very um interesting (The Manson Family Christmas!)

I knew about the Tramadol but actually was on the minimum dose when the seizures started increasing and the increases seem to be unrealated to what dose I am on, I would say sleep, stress and levels of oxygen are far more a factor! But thanks for the warning. It turns out everything to solve one problem causes another and when you have like 30 problems as I do, I am leery of adding many drugs so I look for those that have few side effects, and take only three medical drugs every day, after doing a double blind and on/off study of myself to make sure it wasn't causing problems while curing others.

Raccoon: I am glad you liked the card, since you mentioned it on the post. Yeah, just another day here on the old torture ranch, I mean Victoria!

Yanub: your Rectal/Cranal inversion made me laugh and I showed it to Linda too. BC might have only one nurse but this was actually someone from the BC epilepsy society, thankfully, because I am now in an medical problem that has many people, there are organizations to help me or send me info or call organization and champion for me.

We DO have a one way intercom thing so maybe we will just rig that so I can turn it on when I need help and the person can wear it on thier belt or something. Thanks for the idea. I wish Carapace would come and give me some advice on surviving lots of seizures, other than, "lie there looking funny"

Cheryl: it was very...INTENSE, and the intensity does not seem to be getting through to my GP - perhaps he needs some ADHD meds or the like?

Shea: I think he believes me, becuase the hospital verifies what he saw, he just isn't that experienced (and why after all these years to not have patients with epilepsy, or homeless people with seizures...really, that has NEVER happened?), and so does the, "I have to wait for the experts" - which is really of no use to me who needs help NOW. I don't think honestly he is malicious, but I do think that maybe like people who do have good health, he has no concept of what high levels of pain are like or what a chronic condition is like and thus thinks people exaggerate or that I seem too focused on it or the like.

sarah said...

e -
if you can make it to pennsylvania, I can make the glider ride happen. my father is a pilot, both gliders and small engine, and we happen to live about 15 minutes from the world famous julian glider port:

don't let the bastards get you down...or, can't keep a good woman down!!!