Random Thought #1

Do you ever have days that start off perfectly fine -- Mary Poppins-like in fact, kind of "practically perfect in every way" -- only to have them go dreadfully wrong only a couple of hours later? Yesterday was like that for me.

I was on the ball and ready to conquer the world starting just after 3:00 a.m. In a couple of hours I managed to answer the business email, sort my personal email for answering later, complete the Monday meme posts, scoop the litterboxes, brush two of the four longhair cats, unload the dishwasher, get a new load of laundry started, and harvest my crops on Farm Town. James Brown's song "I Feel Good" was the anthem of the day. Then a single phone call brought it all crashing down around me.

I wasn't really paying attention to the time, but I think that it was shortly after 9 when Betty's estate attorney called. Evidently, he received a phone call from one of the daughters of Betty's deceased husband because she, after a single visit to Betty in the 8 years that she has lived at the board and care facility, was concerned that I might be mismanaging the trust. I don't think much of anything could have shocked me more than that phone call, but I do know that it's been a very long time since I was as angry as it made me!


This individual has no real relationship with Betty, has not bothered to check up on her except for a phone call last Christmas when she told the caregiver that she would come to visit but never showed up, and now, out of the blue, is "concerned" that her care is not being managed well? Where has this person been all these years? In a neighboring city, certainly not too far away to demonstrate this "concern" by visiting Betty to make sure that she is being well cared for. Last week was the first time in eight -- count them, I said E-I-G-H-T, years that Betty's caregiver ever saw this person! How's that for "concern"?


Random Thought #2

After yesterday's "excitement," I've had a headache that doesn't want to give up the ghost and die. I know it's because the anger is still seething in the pit of my stomach, bubbling to the surface every now and again to remind me how utterly brutal people can be. I can't place the blame for this one on The Brain; nope this misery is my own fault. At least the headache is not one of the Chiari types, so I am left to conclude that this must be the kind of headache that "normal" people get, LOL.


Random Thought #3

Surgery update (yes, Aunt Nola, this is for you): Next Thursday, the 27th, I am scheduled to have the thyroid surgery that should have happened last November but didn't because my pre-op blood work showed an elevated white blood cell count that turned out to be an indicator of the very nasty cold that made itself known on Thanksgiving. I have the pre-op appointment on Monday and barring any WBC issues, I will be AWOL for one day next week. Unless I have a seizure or some other Chiari related complication, the surgery is supposed to be out-patient. I am going to discuss with my doctor the possibility of having it done under a local instead of a general anesthesia as this significantly increases the likelihood that I will get to go home on the same day. Besides, how cool would it be to lie awake on the surgery table while a surgeon slashes a hole in your neck and takes out half of your thyroid gland? Sounds awesome to me!


Random Thought #4

Classes begin next week, and I feel sad. No school for me. I'm retired, remember? No animated discussions about censorship in the public school classroom. No more interesting essays defending the First Amendment as it applies to websites with disgusting content. No more introducing the uninitiated to John Milton's Areopagitica or John Stewart Mill's On Liberty. No more poring over the ALA's list of banned books to see which ones we've read. No more. No more. I'm sad.

And did I mention that I'm pissed off, too?

Tired and REtired accurately describes me for the past couple of days. No sitting around munching on bon-bons and watching soap operas all day here. So much for the glory days of retirement!

Despite really looking forward to the Thursday Thirteen meme, I just didn't have time to get to it today. Not that this is necessarily bad; it just means that I'm having another good day and have the energy and concentration to get some more work done. I might could get used to this!

The visit with my wunnerful wunnerful neurologist, Dr. S, went well. We're changing my anti-seizure medications again as the Dilantin has never really reached the level in my blood stream that it should in order to work effectively. Instead of continuing to increase the dosage of a drug that just ain't cuttin' the mustard as my Grandma used to say, I'll go back on Topamax. I did have some issues with Topamax causing brain fog a while back; however, I'm no longer teaching and required to have unfailing mental acuity on demand. I'll take a bit of fogginess over clusters of seizures any old day. Besides, Topamax has three delightful side effects from which I gained some additional benefit in the past and hope to see again:

• it causes weight loss
• it is also used to treat and prevent migraines
• it will allow me to stop taking two, possibly three, additional medications

The next couple of weeks will be challenging as I take both the Topamax and Dilantin until I reach the previous dosage of 100 mg of Topamax twice daily and start to wean off the Dilantin. Been there, done that -- at least half a dozen times -- and will survive it once again.

It's been a few days since I had the chance to do anything but my regular memes, so it's time for me to play catch up. Let me tell you what's going on in my world.

Betty's condition is improving. Because she can't eat by herself, a feeding tube was inserted through her nose and into her stomach. Even though she was seriously drugged for the pain, she didn't like the tube and managed to pull it out a couple of days ago. Rather than put it back in, the vigilant nurses have been feeding her whenever she's awake and alert. It worked like a charm. She is now alert and talking, which means that she will be moved from ICU to a regular room once the chest tubes are removed. That should happen today or tomorrow.


I had some real excitement on Thursday afternoon with my retirement paperwork. In the midst of Betty's illness and my going back and forth to the hospital, I received a letter from the retirement agency indicating that they had received my application and asking that I contact the university's HR department to request that they not remove me from the insurance roll while the application is processed. So on Wednesday afternoon, I did as instructed. Much to my surprise, I got a response from the HR person who helped me take care of the retirement paperwork indicating that the university can't do what CALPERS had requested. It took several phone calls and faxes for me to learn that although I should have been removed from the insurance roll on July 1, a mistake that I made has worked in my favor. Because I turned in the application paperwork directly to CALPERS, the university doesn't know that I am retiring; therefore, I am still on the books, so to speak. No lapse in insurance coverage, which the only reason that I took an early retirement in the first place! Big sigh of relief.

The sorry state of my state has gotten worse. I didn't think it was possible; I was wrong.

• California still does not have a budget.
• We have no money to meet our financial obligations and such a bad credit rating that borrowing is not a possibility.
• Unemployment is now just above 10%.
• Our sales tax was recently raised to help raise funds but since so many people are worried about losing their jobs, they are not shopping enough for it to do any good.
• We're in the third year of a drought so bad that water rationing will likely happen before the end of summer.
• Just yesterday, I heard on the local news that the consistent increase in water temperatures on our side of the Pacific Ocean have made 2009-2010 officially an El Nino year. Rather than go into all the details now, I'm going to use the Thursday Thirteen meme to talk more about El Nino and its effects on the Golden State. Let's just say that it gets really ugly around here when El Nino pays us a visit.
• Our fire season, which normally starts in September and goes through October, has started early. The dry brush, thanks to the drought, on the hills and mountains surrounding Los Angeles, coupled with the outward sprawl that occurred over the past decade, has set up ideal conditions for a far more threatening fire season than normal. It doesn't surprise me that the hills have started burning three months earlier tha usual.

My headaches seem to be under control for the time being. This is a very good thing. Does the absence of headaches mean that everything is well and good? This is my life, peeps -- nothing in it is well and good at the same time! The stress factor is currently high and with stress comes headaches, seizures, and eczema. It's been several days since I had a headache, but The Brain doesn't like to play understudy to my life for very long; therefore, It makes its presence known through seizures. Thankfully, the four that I've had in as many days haven't been too bad. Now the eczema, my body's stress-o-meter, isn't doing as well as the headaches and seizures. I'll save you the gory details and say only that my hands are covered with a rash and blisters that itch like mad. And now, add to the seizures and eczema a sciatic nerve issue that is giving me grief at the area of the right hip. Yesterday was w complete waste because the pain was so bad, I used a couple of Naprosen to help me get out of bed and later, off my chair. In spite of all this, things could be so much worse.

Here's wishing everyone a great weekend!

I've spent much of the day on the pity pot thanks to a paralyzing headache that started shortly after 7 this morning. The Amazing Egyptian Dude woke up much earlier than usual and told me that he would be going to the business as soon as he finished drinking a cup of coffee. I had been up for a couple of hours already and laid down on the couch for a short nap before class.

I don't know how long I slept before that familiar brain freeze type pain struck on the right side of my head. That's the kind of headache that makes moving next to impossible. Although the oxygen tank was right beside me, I couldn't get up off the couch to turn it on or to put the cannula on. I just lay there, frozen in time like the Lady of Shalott. Then I heard the Amazing Egyptian Dude! He hadn't left early after all. When I get these headaches and need to get his attention, I whistle; he's got some significant hearing loss and would never hear me if I tried to call him with words because the pain is so intense that barely a whisper comes out.

I whistled and waited.

And I whistled and waited.

And I whistled again.

Nothing.

I could hear him across the room but just couldn't muster the strength to do anything else to get his attention. It took several attempts, but he finally came over to check on me. Turns out he had heard me from the beginning but thought that I was dreaming and making noises in my sleep, so he decided to hang around to wake me up for class!

Cafergot and oxygen later, I could move at least. The pain had dulled to a livable level but the time that happened, it was too late for me to go to class. Besides, I try not to drive on headache and seizure days.

So I missed my class today, The Brain bit me in the butt big time, and I am frustrated as all get-out over the whole damn situation. I've never been "normal," but this level of uniqueness is really getting to me. I want to be in control of myself for a change instead of taking the passenger seat to The Brain and its electrical thrill seeking.

I miss me. I miss my life.

Is that the sound of the wahmbulance I hear in the distance?

• It's been a while since I posted anything about having problems sleeping, which is a good thing because it meant that there wasn't a problem. Like everything else related to Chiari, I never know when the demon of insomnia is going to emerge from the cave and make itself known until it happens. And it has happened. Bleh! I'm back to sleeping a couple of hours and being awake for three or four, all day and all night long. How this is going to work when it comes time to go to class is beyond me. I'll just have to play it by ear.
• I missed a documentary on HBO last night that I have been waiting to see ever since I heard about it from the Sundance Film Festival. The film, Shouting Fire: Stories from the Edge of Free Speech, directed by Academy Award-nominated filmmaker Liz Garbus, "examines the balancing act between protecting civil liberties and national security in a post-9/11 world, asking whether all speech is equally free," according to HBO's website. Now I have to monitor the TV schedule to see when it will air again and mark it on the calendar on my iPhone so that I don't miss it a second time!
  

• Last night, I heard on the news about a plane crash involving a Yemeni airlines flight over the island of Comoros. At that time, the 150 passengers were not expected to have survived. Just minutes ago, though (it's just before 3:30 a.m.), CNN reported that a toddler was pulled ALIVE from the wreckage! Alhamdullilah ---> in English, that's Thank God!
• So I took the plunge, made a decision, and filled out the questionnaire for the person whom I chose to design my new blog template. Boohoo for me, her queue is full until sometime in July. :( This would be a good time to remind myself that patience is a virtue, LOL!

We have a family owned and operated business that keeps us pretty busy. Each of us takes care of a certain aspect of the business and together, we keep it running fairly smoothly most of the time. And then, there are those days when The Brain gets in my business and prevents me from taking care of business, thus adding stress to everyone else's business. Such has been the case for the past two weeks.

Iman, our newlywed daughter, takes off every other Friday because her Awesome Egyptian Dude, has the day off from his job. (Note that my Egyptian Dude is Amazing, hers is Awesome.) Under normal circumstances, this isn't a big deal because I am in the office picking up the slack that her absence leaves. But when The Brain asserts its authority, things get really interesting on these Fridays. Like yesterday, for example.

The day began with a headache. Not a bad one -- certainly not bad enough to cause me to test out the newly acquired oxygen tank, not even bad enough for me to take more than 2 Ibuprofen to knock it down. The dull thumping was definitely something I could deal with, and deal with it I did. I processed orders for shipping, answered telephone calls, and shuffled paperwork all around for several hours without incident. The Brain maintained its presence but instead of taking center stage, played overseer to my activities from behind the scenes; however, The Brain couldn't be without the spotlight for very long. And so it was that during a phone conversation with my favorite aunt, The Brain, flipped the switch and sent a jolt of electricity through my body. Thankfully when the seizure came, I was not the one talking; I was listening. When The Brain decided that playing shock therapy was no longer fun, the usual coughing fit began.

A cough, cough here. My aunt began to sense that something wasn't right.

"Your headache isn't making you cough like that, is it?" she wondered.

"No," I answered honestly. "My headache isn't that bad, really." My family worries too much about me, and this call wasn't about me, no matter what The Brain thought. My aunt returned to the conversation, and The Brain returned to the coughing.

A cough, cough there. And my aunt pauses. "Are you sure that you're ok?" How do I tell her, without freaking her out, that I had a seizure? She worries enough already and, like my other family members, knows that stress is the typical trigger for my seizures. If I tell her that I had one while she was talking to me, she'd end the conversation, worried that she had been the cause. "I'm fine," I reassured her. But The Brain had other ideas.

Here a cough, there a cough, everywhere a cough, cough. "Carleen," my aunt said nervously, "something is wrong! Why are you coughing so much?"

"It's nothing, really. I had a seizure, and the coughing is The Brain's way of letting me know that it's finished. No biggie," I told her. A seizure that is followed by so much coughing is one that requires a nap right away, and I knew that; however, I was not about to cut off the conversation and leave my aunt worrying.

I fought the need to sleep and finished the conversation. It was mid-afternoon and I knew that if I took a nap at that point, I wouldn't sleep at night. The Amazing Egyptian Dude, who had wandered in and out of the office during the whole thing, packed me up and took me home as soon as the call ended, hoping that I would give in to The Brain's demands and sleep.

I did fall asleep, but not before an amazing thing happened. In Greek mythology, Zeus gives birth to his daughter Venus in a most unusual way: fully formed and already an adult, Venus emerged from her father's head. I am now convinced that The Brain studied Greek mythology a little too much in college because,


after intense labor that included four more seizures, a Diva was born yesterday. Why? Because The Brain is convinced that it's

Just a quick update to let everyone know that I have survived the day so far. My neurologist is wonderful, I swear. I got an appointment with her on July 22, the soonest one available, but I emailed and asked if she could get me in sooner. Because I'm not really a complainer, she knows that if I want to be seen, I'm miserable.

Part of the problem I've been experiencing with the headaches is that I have medications for each of the different kind that I get. Over the past week, they have been alternating from one type to the other which makes choosing the proper medication at the correct time difficult. The end result is that I suffer because when the Ibuprofen doesn't work, I don't know which medication to take.

I've been given the go-ahead to skip the Ibuprofen and go straight for the Cafergot. It's straight caffeine and works on "the hair of the dog that bit you" principle. Now you'll know why that idiom just had to be on my list, LOL! Dr. S said that it won't hurt me to have a couple of doses more per day than the bottle says. She asked if I wanted something stronger for the pain and when I said that I did, she knew that I was in trouble. Peeps, I am so afraid of using pain killers that I have had 6 major surgeries without ever using anything for pain besides Tylenol or Ibuprofen.

So now I am happily caffeinated, headaches under control for the time being, and waiting for Dr. S to squeeze me into her schedule as soon as she can. I should be bearable again soon enough.

On Friday, I wrote

And as for the weekend, tonight I'm looking forward to watching the new documentaries I got for my birthday, tomorrow my plans include catching up on the laundry, and Sunday, I want to see what happens!

I often wonder how I maintain a sense of optimism, of making plans for things to do in a few days because no matter what I want to do, The Brain has a habit of getting in my way.

The early part of last week was dominated by seizures, those pesky electrical jolts that The Brain uses to let me know who is boss. I should have known that headaches would soon follow, as the two are best buds. Wednesday, Thursday, Friday, and Saturday found me crumpled up on the couch in a feeble attempt to sleep off the pain without much success.

Because I never got headaches in my younger days, I had no way of sympathizing with my friends who did. My attitude was that you take an aspirin or a Tylenol and get on with life. But that was before I experienced one! The Mayo Clinic has an online migraine self-assessment test that I took yesterday, during a period when the headaches were on vacation. Here's my result:

Your answers indicate that you're currently experiencing a severe level of disability as a result of your migraines.
It's important to talk to your doctor about strategies for coping with your migraines. Because your level of disability is severe, it's likely that your doctor will recommend a combination of acute and preventive medications to help you cope. Preventive therapy can help you control migraines before they happen. Acute treatment involves taking medicine to stop the pain as soon as a headache begins.

Yep, been there and done that. I have a cornucopia of medications at my disposal and use them when necessary. Between migraines, ice pick, cluster, and pressure headaches, it's often challenging to determine which medication to take. And because I don't want to rely on the medications, I always start with Ibuprofen. If I catch it early enough, 800mg of Ibuprofen will usually take care of the ice pick, cluster, and pressure headaches, but the darn migraines are a completely different story! For those, I have a pill to take as soon as the pain begins. Most of the time, it works like magic; for the times when it doesn't, I can take a different pill to help bring it under control.

So, despite the plan to watch my new documentaries, catch up with the laundry, and see what exciting things I could do on Sunday, I spent the weekend at war with The Brain. Again.

Way back in the day, I began this blog as way to distract myself from the daily ups and downs of living with a degenerative illness that sometimes knocks me soundly on my butt. It took some time, but it has now become a much enjoyed part of my daily routine -- except on the days when headaches and seizures plague me like they have for most of this week.

I have made a conscious decision to avoid life on the pity pot. In this regard, I am absolutely Stoic. We often associate a lack of emotion with the Stoics, but these guys were far from emotionless; they just chose to avoid emotionalism through the use of logic, reason, and reflection. Like the Stoics, I know that I have no control over Chiari or what it does to me; however, I do have control over how I deal with it. I can make a conscious decision to perch perpetually on the pity pot, or I can choose to plop on the pity pot only as needed and to work with what I have and who I am now to the best of my ability the rest of the time. I nearly always choose the latter.

This past week, however, has seriously tried my determination to avoid feeling sorry for myself. I've had the hurts-to-breathe headaches every single day since Sunday. Thankfully, the medication has helped to bring them under control fairly quickly; however, they are so debilitating that it's hard for me to clear my head of the fog they bring and to focus on tasks. Add seizures, which I had on Tuesday and Wednesday, to the mix, and I become a real mess, really quickly.

To deal with the down time, I've learned to write my meme posts way ahead of time whenever possible and to schedule them to go live on the appropriate days. This makes my blog look like all is peachy keen in my little world, even when I'm curled up in a fetal position on the couch trying desperately to make the world go away. Unfortunately, what I can't do is respond to comments from the couch. And that is the whole purpose behind this post.

Peeps, it's been a miserable week, and I haven't been able to respond with any regularity to your comments. I am truly sorry. I know how important comments are in the blogosphere, really I do, and I appreciate every single one that is left for me. Please don't think that I'm not grateful or that I am ignoring what you have to say; this is not the case. If I don't reply to comments, it's because I'm looking for the toilet paper while I sit on the pity pot or because I'm playing roly-poly on the couch and haven't found a way to uncurl myself and still breathe.

So, here's to the end of the week:

I live with a degenerative and progressive brain condition called an Arnold Chiari Malformation. My Thursday Thirteen for today was inspired by Thom, who didn't realize that I had had brain surgery and dug around here to find out why. Here's a list of 13 facts about ACM.

1. Arnold Chiari Malformation is the medical name for what I like to call a brain fart. In a nutshell, people who have ACM have brains that are too big to fit properly inside their skulls. Although I like to think this is just because we're so doggone smart, medical evidence does not support this hypothesis. Because the brain doesn't fit like it should, the tonsils (foramen magnum) hangs down, outside the cavity of the skull, and into the spinal canal.
2. ACM is a real pain in the butt. . .er, head! The spinal canal is made just big enough to hold the spinal cord so when a protruding piece of brain scoots down in there, life can get really complicated. Things like killer headaches, dizziness, nausea, vertigo, tingling sensations, difficulty swallowing, double vision, difficulty hearing, balance issues, and insomnia are just a few of the symptoms that ACM triggers and that ACM patients deal with on a daily basis.
   
3. Size does not matter with ACM. Some people have very small protrusions and suffer considerable pain, while others may have a larger protrusion and never have a symptom. In my case, a chunk measuring 8 mm -- not really big, but definitely not small -- sits in my spinal canal. If it hadn't been for the fact that I suddenly began having headaches so painful that it hurt to breathe, I would have never known that I had a problem.
   
4. What comes out, can't go back in. If the brain breaks free of the dura mater, the protective membrane that surrounds it, it can never be put back inside. The solution to this problem is surgery. To allieviate the pressure that this piece of brain puts on the spinal cord, decompression surgery, typically composed of three parts (craniectomy, laminectomy, and duraplasty), is the most widely recognized treatment.
   
5. If undiagnosed and treated, ACM can cause paralysis or death. Dr. G, Medical Examiner, part of the Discovery Health Network's programming, had an episode about a young man whose ACM was undiagnosed and who died because the brain protrusion pinched his spinal cord.
   
6. No known cause or cure. Although many physicians believe that ACM is a hereditory problem, there is no definitive proof of it. Nobody in my family has the problem except me, but Julie Carter, a Chiari activist, and all three of her daughters have it. If you're a fan of Extreme Makeover: Home Edition, you might be familiar with the Carter Family; they received a home makeover from ABC a couple of years ago.
   
7. Classified as a rare disorder by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). What this means is that ACM affects less than 200,000 people in the U.S. population. Ok, so this just means that I'm special -- I can live with that!
8. I'm a Zipperhead! What's a Zipperhead, you want to know? That's the nickname that Chiari patients call a decompressed Chiarian. After the surgery, the back of your head looks like its been closed with a zipper, and that's where the nickname comes from.
   
9. Getting a diagnosis is not easy. Because ACM triggers so many different and seemingly unrelated symptoms, most ACM patients don't get the proper diagnosis for many years. This was my case. The problem was clearly present in my early teens, but I was shuffled back and forth from the ENT to the family doctor to a gastroenterologist. Back in those days, the MRI was not available and since it is the now the way that most people are diagnosed, I can't blame any of the doctors who treated my symptoms without getting to their root cause. I just had to wait until technology caught up with them.
10. Decompression surgery can alleviate some of the symptoms, but it doesn't solve the problem. Because of #4, surgery doesn't solve the problem; however, it did help to control the symptoms better. After I had surgery, the headaches occurred less frequently, which is good. I still have problems with double-vision, my balance is so bad that my neurologist joked how it's a good thing that I don't drink because I would never pass the standard police drunk test (heel-to-toe walking a straight line), my depth perception is so off that I can't see well enough to walk down a flight of stairs or even a curb without falling, and I have complex-partial seizures that come from the right parietal lobe of my brain. The remaining symptoms may sound bad, but I manage to live a relatively "normal" life with them.
    
11. ACM is more common in women than in men. I like to think that this is just because we're naturally smarter, so our brains are naturally bigger! It's not likely that the medical community supports my findings, though.
    
12. Roseanne Cash, daughter of country music legend Johnny Cash, is also a Zipperhead. She had decompression surgery in December of 2007. Maybe it was ACM that was causing her "Seven Year Ache." Ok, that was a very bad joke!
    
13. ACM is an invisible illness. Because people can't see the piece of brain that hangs out in the spinal canal, they often misjudge a patient's reaction to the symptoms. Our society is trained to look for visible symptoms of an illness -- watery eyes and sneezing for allergies, red bumps for chicken pox, coughing and a stuffy nose for a cold, etc. -- and when none are present, judgment of the patients who suffer from invisible illnesses tends to be rather harsh. Perhaps because my invisible illness involves The Brain, that most sacred of internal organs (muscle just doesn't sound as dramatic here, sorry), I am treated far more kindly than someone who has Lupus, for example. This is just plain wrong!

I hope that my list has enlightened your world. If you want to know more about ACM, my symptoms, or decompression surgery, there are lots of links in my sidebar.

If you'd like to join in on the Thursday Thirteen fun, click here.

No smiles today, just frowns I've got.
It's time for a rest on the pity pot.

I'm sad, I'm cranky. It'll be a day or two
Of feeling down, of feeling blue.

This isn't just a simple mood swing,
It's an honest to goodness pity pot thing.

You must admit that I've earned this spot
Right up front on the pity pot.

It's just so hard to keep this smile.
I need a pity pot break for just a while.

So give me time to wallow a bit.
I know real soon that I'll get over it.

The clouds will part and the sun will grow hot,
And I'll jump right off this pity pot.

This morning started out right nicely enough. I woke up early, got everything ready to begin grading essays, and was all set to put the past few days' worth of seizures behind me. I had heard something on the news that I just had to share with the Amazing Egyptian Dude, so I got up from my computer desk and began to amble over toward the living room. Maybe half a dozen steps into the trek, and I'm hit with the headache -- the one that makes breathing painful and moving excruciating. It nearly always starts on the right side, as that's the side of my body that Chiari seems to like torturing the most.

I grabbed my head and wobbled over to the couch, where I collapsed in a groaning heap. Whether my cats can sense something is wrong or they just like me being a captive audience for their affections, I don't know; but just seconds after I got myself situated comfortably on the couch, I had one cat at my head, one on my chest, and another on my feet. I fell asleep that way. See when I get these pressure headaches, the only way to deal with them is to sleep them off. Although I did manage to sleep, I awoke with a headache and a droopy right half of my face. If you've ever seen anyone with Bell's Palsy, then you'll know what I mean by a droopy face.

The headache is gone now, but I am wiped out. I am confident that I've earned this break on the pity pot, and by golly, I'm going to take it!

I've written before about the feeling of running in a hamster wheel and not getting anywhere, especially when it concerns the miserable Chiari headaches that I get more than often than I like. The past few days have involved a lot more running in circles without getting anywhere, and I am intensely frustrated about it.

Sleep, or rather the lack thereof, which is often at the center of the circular dilemma, proved even more elusive this weekend than normal. I played musical beds all weekend long as I tried to find a comfortable position for my neck so that sleeping didn't trigger a headache and wake me up. Fat chance! Whether I built the nest of pillows on the couch, our bed, or the futon in Iman's old room, I simply could not get comfortable enough to sleep longer than 30-40 minutes at a stretch. My neck doesn't usually give trouble, unless the muscles tense up in response to a particularly nasty headache; however, the bones in my neck are now a source of pain on their own. It's a bit freaky to roll my head around in an attempt to loosen up the neck muscles and hear the grinding of bone on bone when I do! The grinding sound gets loud enough that even Ali can hear it. So, I now have to figure out if the pain the neck is the source of the sleeping problem, or if the the sleeping problem is causing the pain in the neck. Wonderful!

Now that the rant / vent is over, I'm going to move on and make a real post, LOL!

Because the really, really good ones are so few and far between for me, I feel the need to celebrate the genuinely good days when I have them. Today has been one of those rarest of gems.

Nothing out of the ordinary happened, but perhaps that is what has made today so good; it was deliciously ordinary!

There was a time when I loved the symbolism associated with a circle. How romantic it seemed to me that such a simple and ordinary shape could convey such profound meaning as eternity or never ending love! But I have to admit that my honeymoon with the circle is definitely over.
Circles no longer hold only a positive connotation in my world. They have come, instead, to represent entrapment in the more uncomfortable and frustrating aspects of life.

Chiari is a circle to me. The illness has trapped me in all its roundness and no amount of effort on my part will ever break that circle so that I can escape. Every day I am encircled in the embrace of a condition that controls everything I do. The surprise attacks from a faulty cerebral circuit board that result in headaches and seizures remind me that I am part of "the endless round" of "despair and hope" that forms "the circle of life" ("Circle of Life" lyrics). If the attacks I've experienced over the past four days are any indication, I'd have to say that I am one heck of an important part of that circle!

Time is a circle to me. Like a dog chasing its tail round and round, I spend my days chasing time. And although life sometimes throws me a bone by giving me the illusion that I've caught up with the myriad tasks that need my attention, I am more often like the poor dog whose time is spent in the fruitless pursuit of an unattainable goal. Spring break has come to an end, and the TO DO list it began with circles my neck like a noose. Life was kind and threw me a couple of bones this time around, though, as I did manage to catch up with most of the laundry that had piled up and was able to cook a few things in large batches suitable for freezing for later use.

Work is a circle to me. The more work I do, the less I seem to accomplish because while I've been working on one task, another four have made their way onto my TO DO list. We've been exceptionally busy at the office for the past several weeks. When it gets this hectic, family and friends -- none of whom own and operate a small business -- tell us to "just hire some help." In theory, that's a really great idea; however, the costs associated with having employees outweigh any benefits we may derive from them at this point. Our business is successful and growing, but we are nowhere near rich and with me retiring ahead of schedule and losing nearly half of my income when I do, we can't "just hire some help." At least not yet. And so, the TO DO list grows daily, and the noose tightens.

Yes, the honeymoon is definitely over, and the romance has died! The circle and I must now find a way to get along with one another, to settle into a comfortable pattern that allows us to coexist peacefully. Eternity is, after all, a very long time!

Hey you misfiring mass of mighty matter,

What the hell is yanking your chain these days? You might find this difficult to believe, but the increased frequency of electrical overload that you have unleashed over the past week is not exactly my idea of fun!

Do you have any idea how not cool it is when you send out a surprise attack of the shorted switching stations while I'm trying to eat? I swear to you that I've really tried to find humor in the waves of nausea; I've looked for something pleasant about the painfully sharp tingles that run like fire ants up and down my right arm; I've tried to embrace the coughing sessions that tell me you have delivered the last jolt for the time being. But no matter what I do, turning your peak demand deliveries into a joyful experience is just not happening.

As much as I don't like your sudden bursts of energy during lunch, dealing with them when I ought to be on vacation in a chalet atop a mountain in Dreamland is even worse. Hello, your Electrical Eminence, has no one ever told you about the dangers we both suffer when sleep deprivation occurs? In addition to causing the fog that fills the void between my ears, a lack of sleep contributes to memory impairment, an inability to concentrate, a compromised immune system, slower reaction times, and slurred speech. Oh, and I forgot to mention that being too tired makes my eyes burn and water so much, day and night, that I develop oozy, crusty sores on the skin beneath the tear ducts. And the dark luggage that I carry around under my eyes may be full, but the bags aren't packed with comfy jammies for a restful vacation at the Sealy resort!

A couple of centuries ago, at a meeting of truly magnificent minds, a group of forward thinking men drafted a remarkable document. Among other things, this document laid out the ground rules of behavior between the governing and the governed. We call it the United States Constitution. Number 8 on the list of rules states that the governing body shall not inflict any cruel and unusual punishments on the governed. Since you, my Magnificent Monarch, are the engine that runs this incredible machine called my body, you must remember to control your desire to provide me with examples of the shock and awe of your power. I already know how awesome and powerful you are, trust me!

Can't we just get along?

When I was a kid, I had an adorable teddy bear hamster. His cage was on the desk across from my bed. Back in those days, I slept through earthquakes--literally--so Charley's frenzied nocturnal workouts on the running wheel never bothered me. By the time Iman was old enough to want a pet of her own and to be given the care of a hamster, the old saying that squeaky wheels get the oil had taken on a whole new meaning to me. It was then that I began to wish that I could experience the joy of running around on a wheel, joyfully going in circles and getting nowhere without a care in the world. Life with Chiari often leaves me feeling like a hamster on a wheel except that where the hamster enjoys the ride and doesn't care that there's no destination to reach at the end, I find running in circles quite frustrating and know that the more I run toward feeling better, the further away from that elusive goal I get.

I'm still not quite okay after the seizures and headaches of a few days ago. I stayed at home on Friday, thinking that I would get some things done around the house before beginning the grading fest looming on the horizon. Armed with a neatly organized To Do list, I tackled the chores: cleaning the cat boxes, dusting the ceiling fans, washing the curtains, scrubbing the bathroom fixtures. With each item that I crossed off the list, the more empowered and able to complete the next task I felt. It's been a while since I managed to maintain such focus without feeling like I needed to nap between jobs, so it was with a sense of exhiliration that I unloaded the dishwasher and made it ready for another load. And then, like some great cosmic joke with me as the punchline, something pulled the rug right out from underneath me!

With no warning ahead of time, my legs buckled, the kitchen rug slid across the floor, and I landed in a heap with a seizure well under way. Chiari patients sometimes have drop attacks during which muscle tone weakens suddenly and significantly enough that they drop things they are holding or fall if standing. I've had a few drop attacks, but they occur so rarely that I seldom think about them. I'm sure that what happened on Friday was a drop attack followed by, not precipitated by, a seizure. The whole event lasted 45 seconds or so, and I never lost consciousness. My dignity, on the other hand, didn't fare quite so well. :)

The seizure was intense enough that fighting off the need to sleep afterward was impossible, and I gave in to the need for a nap. For a few hours after the event, I felt weak, shaky, and a bit disoriented. I guess that my right leg must have been the one to bear the brunt of the drop attack because it still aches (it's currently 2:16 am on Sunday). I've had a couple of small electrical shortages, with headaches and stiffness in the neck thrown in for good measure, since the attack. Still, I haven't felt the need to bring out the big guns (Cafergot) yet, as I have an incredibly high tolerance for pain and the prescription strength Ibuprofen makes it bearable.

For now, my inner hamster has joined me on the pity pot and together, we're running like the wind on the Chiari wheel of life. Oh, how I wish I could be like Willie Nelson and sing about how good it is to be "on the road again."

Do I hear the wail of a siren in the distance? I sure hope so, because I am in desperate need of a waaaambulance! Someone please call up the reinforcements before my fanny becomes permanently attached to the pity pot!

Ok, so yesterday was just plain terrible no matter how I look at it. The cluster of seizures that began in the middle of the night on Tuesday left me with clusters of headaches on Wednesday that rendered me just about as useful as plastic surgery tips from Jocelyn Wildenstein. I don't give in or up easily and genuinely believe that location matters very little to misery, so I went to the office. (Side note: Ali and I have a business, so "the office" to me means the location of my desk in one of our warehouses.) Besides, pity pots are portable!

Seizures and short term memory are not the best of friends. In fact, they really don't like one another at all most of the time. Thus it should not have surprised me that I completely forgot Ali's dental appointment yesterday morning or my own eye exam appointment in the late afternoon but remembered that I would be missing out on seeing Phantom of the Opera. Back in January, I posted about anticipation and mentioned that I had bought tickets for myself and the niece to see the show on, you guessed it, February 18th! In the heat of the excitement, I hadn't considered that (1) the show started at 8 PM, (2) I live in Orange County and the theater is 35 miles away in Los Angeles, (3) I can't see well enough to drive at night, and (4) I would have to find someone to drive me and the niece to LA then be willing to wait around for 2.5 hours until the show finished.

Ali volunteered to play chauffeur for us. But the closer the date of the show drew, the less I wanted him to make yet another sacrifice for me. I mean, really, the poor guy already hangs out in the car on Thursday nights while I teach a class, so why on earth would I want him to waste yet another evening stuck in the car while I enjoy musical theater? How utterly selfish is that?! Iman and Magdy (daughter and son-in-law) volunteered to drive us and hang around in Hollywood until the show was over, but it's a long drive and Magdy has to be at work very early in the morning. A solution to the problem came to me a couple of weeks ago when it hit me how nice it would be that two birthday girls (Iman on 2-4, Basma on 2-17), both of whom are as crazy about Phantom as I, share the evening together and gave my ticket to Iman for her birthday. It's a good thing I did, too, as I would never have made it to LA yesterday; however, that doesn't mean that I don't get to feel sorry for myself for having to miss out on the show!

With the constant pressure, banging, and throbbing going on in my head, I didn't accomplish anything at the office except to make Ali feel terrible that I was there at all. Ours is a genuine old-fashioned "mom and pop" business. Ali, I, and Iman are the only employees and between us, we manage two warehouses, a brick and mortar shop, a couple of websites, and all the wholesale and retail customers they bring. Since Iman got married last month, she cut her hours by half to make it easier to manage a full-time load of classes while working and adjusting to married life. Add to this the time I spend away from the business to take care of my teaching responsibilities both in and out of the classroom, and you'll see quickly enough that Ali is one heck of a busy man all the time. How could I add to te burden he already carries so willingly?

And so, I spent yesterday on the pity pot lamenting the misery that came in the wake of an avalanche of seizures that triggered an eruption of headaches, mourning the loss of much of my independence, and bemoaning the burdens that Chiari forces me to dump on my family. For now, I'm going to try my best to play like Scarlett O'Hara because, "After all, tomorrow is another day."

As if to remind me of yesterday's discussion about invisible illnesses, my brain took it upon itself to have an electrical surge a couple of hours ago. Of course it couldn't have come before I went to bed because that might have made it much too easy for me to sleep through the night, something I seem to have forgotten how to do.

When it comes to seizures, most people automatically think of the worst type -- the kind that causes eyes to roll to the back of the head, tightens muscles so that they twitch and spasm, and leads to an unconscious flailing about of the body under assault. I used to conjure the same image of a seizure -- until I learned that scar tissue on the parietal lobe of my brain indicated that seizures had long been a part of my life without me even realizing it.

I have complex partial seizures that occur on the right side of my brain, in the parietal lobe, and seldom cause me to lose consciousness. It may look as if I have mindlessly drifted off into an alternate universe, but I remain very much aware of what goes on around me during a seizure. I do, however, lose the power to respond while neurons perform the jive across the stage of grey matter in my head. The seizures often occur in flurries or clusters, meaning that the first one acts a trigger for others. My husband describes them like an earthquake and aftershocks; those of us who live in Southern California know that after an earthquake, aftershocks are a given. My seizures act the same way.

So, what happens when I have a seizure? Some people who deal with seizures have an "aura," or a way of knowing that one is coming. I am one of those lucky folks. In fact I'm doubly blessed because I have two signals to alert me that my brain is about to experience an electrical overload. The first aura is a burning smell. When I start sniffing the air, checking out the stove and appliances, examining electrical outlets, and asking if anyone else smells something burning, look out -- a seizure is on the way. With this aura, I never know when the event will happen, just that it will. The second way that I know to prepare myself for a seizure happens very quickly and when it does, I know that a seizure will hit me in a hurry. This is the most frequent beginning to a seizure for me.

A gentle tingling sensation at the bottom of my feet is the first signal. I'm not ticklish (except between my toes), but I can imagine that the feeling must be similar to what those who do have ticklish feet feel. In a matter of a second or two, the tingling in the feet is followed by the strongest feeling of nausea I have ever experienced without actually barfing my guts up. As soon as the nausea happens, I know what to expect and sit down if I'm not already seated. I've only gone down twice during a seizure, but those two experiences seriously traumatized me. Lying in a heap on the floor and drooling all over oneself is not very pleasant, nor is it particularly graceful looking!

After the aura pays me a visit, a light film of sweat will break out on my upper lip, saliva will begin to fill my mouth more quickly than normal, I may feel hot or flushed, then the right arm will begin feeling numb. At about the same time that the arm goes numb, I just drift off. To those who see me when it happens, I appear to be daydreaming or staring off into space. When the electrical activity in the brain starts to settle down, I will begin to cough -- sometimes quite violently, especially if the seizure has lasted longer than 30 seconds -- and shake my arm to relieve the numbness. The coughing spell sometimes lasts 5 or 10 minutes, during which time I am coming out of the seizure.

The length of the seizure determines the amount of time it takes me to come out of it. On the days when I have clusters, the seizures themselves don't last any more than 30-45 seconds but with each one, coming out gets increasingly difficult. No matter whether the seizures occur in clusters or not, I am compelled to sleep afterward. I've tried to fight off the need to sleep but doing so only exacerbates the problem and often triggers additional seizures.

My neurologist assures me that once we find the right medicine in the proper dosage, the seizures will be fully controlled. I can't wait until that happens!

If you overlook the luggage under my eyes from chronic sleep deprivation, the wobbly walk that comes with disequilibrium, the funky way I step down from curbs to avoid falling off them, or the way I have to tilt my head to avoid seeing double, my very serious and very real illnesses are invisible to most of the world. I'd never thought much about this invisibility before reading the latest post on Prof S's blog and following it up with Michelle's post, the one that got Prof S thinking on the subject. But now that I'm contemplating the subject, it's clear to me that I've been damn lucky. Instead of getting "But you don't look sick!" comments, I receive accolades for "holding on so well," "fighting bravely," "overcoming obstacles," and setting an "inspirational example" for others. My illnesses are as invisible as fibromyalgia, chronic pain, Lupus, and migraines, among others, yet when I tell people about them, the response I receive is always positive and sympathetic. Why?

Strangers who look at me won't see the piece of brain that hangs down in my spinal column, nor will they see the majority of the symptoms this miniscule protrusion causes. Arnold Chiari Malformation is an invisible yet progressively debilitating condition. Unless I am actively seizing, people will never know that I have Epilepsy, either. On the surface, I look fine, peachy keen, hunky dory, and above all, healthy. But perceptions can often be deceptions, and I think this may be the case with most illnesses.

Society has conditioned us to look for physical signs of illness such as a cough and stuffed nose for a cold, withered and twisted hands for rheumatoid arthritis, or tics and outbursts for Tourette's Syndrome. The reality, though, is that most illnesses -- even the ones we know best -- are invisible! Can you look at someone and just know that (s)he has cancer, diabetes, or heart disease? Not likely because although we know and fear these illnesses, they are every bit as invisible as Lupus, fibromyalgia, chronic pain, ACM, and epilepsy.

I believe that the positive feedback the explanation of my illnesses draws from strangers has to do with location, location, location more than anything else. ACM and Epilepsy originate in the brain, the body's epicenter. No other organ, except maybe the heart, inspires as much fear and awe as the mass of grey matter that lives in our heads. When I have a bad day and people hear about it, I get positive responses and sympathy because my conditions are neurological. And when people hear that I've had brain surgery, their reactions are even more kind and sympathetic. But I'm sure that if I were to tell strangers that I suffer from chronic pain, their reactions would be mostly negative. Aches and pains are a normal part of life, right? We all have them and ought to learn how to cope instead of concocting a condition for them. Sound familiar? This is where ignorance comes into play.

Ignorance of an illness does not make it any less real to the people whose lives are wrapped up in it. Just because we can't see what causes the pain of fibromyalgia doesn't make it a figment of someone's imagination. Unless I went around flashing the now faded red badge of courage that extends from the midpoint of my skull to slightly below the point where my neck is connected to my shoulders, nobody would know that I have an illness, either. But because I can say that a skilled neurosurgeon alleviated some of the symptoms associated with ACM, I get slack that others don't. Pain and misery are pain and misery no matter where they originate!

It was bound to happen sooner or later. So when it did finally happen this afternoon, why was I so unprepared for it? Why do I feel so embarrassed, ashamed, and humiliated by it?

The inevitable happened in my afternoon class today. I had a seizure. It wasn't bad and didn't last long. The usual coughing fit that lets me know I'm coming out of the seizure was mild by comparison to what usually happens. I didn't drool this time, nor did I freeze up completely during the event. And although this seizure was really not a big deal, I was left feeling absolutely and utterly embarrassed and humiliated by it.

Class was about halfway through when I started feeling the all too familiar tingling sensation and nausea that are my body's way of announcing the onslaught of electrical hyperactivity in my head. Right in the middle of discussing John Stuart Mill's essay, On Liberty, and explaining the influence that Mill's "no harm" clause has had on our own incitement laws, I very calmly announced, mid-sentence, to my class, "Please don't be surprised if I start to drool and stare off into space because I'll be having a seizure in just a few seconds." Because the seizure was mild, I skipped only a couple of beats before regaining my composure and continuing the conversation while the electrical wiring in my head misfired for a few seconds. And when it had finished, I coughed and shook my right hand to rid it of the tingling sensation, and went on as if all were right in my world.

Thankfully, I warn my students at the start of each semester that the possibility of me having a seizure is quite real. But I also let them know that (1) it has never happened on campus before (it hadn't until today) and (2) I have two different auras to warn me a few seconds before the event happens. I explain what happens when I have a seizure, let them know that I will warn them before it happens, and reassure them that they don't need to do anything except wait until they see me shake my hand and cough as that is the signal that the seizure is mostly finished. Thus when I announced the impending seizure this afternoon, they remained cool, calm, and collected. Perhaps it helped that I didn't panic despite my embarrassment.

Having a seizure, no matter how mild, in front of my students is something that I had prayed would never happen. Now that it has, I need only to find a way to deal with the sense of shame that the experience has left behind.