Pain and Purchases

First, DH's grandmother died yesterday.  He is flying back East for the funeral on Saturday, and will be back Tuesday.  He is not freaking out, but he is more upset than he is letting on.  His dad didn't think we should go, so he decided he is going alone; tickets are so expensive, PLUS all the fees they now have.  He wants to go is to see his grandfather, who is 95.  I never really knew his grandmother, because she already had Alzheimer's when I met her.  So her funeral would be more dutiful than cathartic for me.  

And having been raised Jewish, open caskets freak me out.  Just not a Jewish thing.

In migraine news, I GOT A REFERRAL TO UCSF'S HEADACHE CLINIC!  I had to stop the nortriptyline because of side effects.  They included mental confusion, urinary tract issues, lethargy, poor balance.  And when I went up to a higher dose, my mood was definitely acting up.  I was afraid I was teetering on the edge of a mixed episode.

There may have been just a bit less intensity to the headaches I am getting, but not enough to make the potentially worsening side effects worth it.  After 7 weeks, the side-effects are probably going to last as long as I take it.  I thought I was getting depressed, but now I think it was all Nortriptyline side effects.  

So finally it has come to this:  My neurologist said, "We have a lot of options!"  and immediately suggested Botox  Um, no.  Not under his supervision.  Maybe if UCSF suggests it.  Maybe.  It creeps me out.  Although, the one person I actually have "talked" to about it has loved it, and said it changed her life.  Hmmm.  Blech.

"Well, I've heard fever few an butterbar might help."   Yes, my neurologist thinks I should try herbs.  I asked about acupuncture, and his attitude was, "Sure, try whatever you want, but good luck getting your insurance to pay for it."  We shall see.  I think I am going to go see Angie at Lohaki Acupuncture, even if my insurance won't pay for it; I can start doing that about twice a month.

He also said becoming vegetarian might be a good idea.  I keep saying I want to do that, even if it is just at home.  But it boils down to my being lazy: it seems like all the recipes for main dishes are complex.  And I have trouble gauging how many fruit and vegetables we will eat before they spoil.  Part of the reason for this is that Nortriptyline lethargy has meant I haven't been cooking. At all. We have been grazing, eating cheese, cereal, canned soup, fruit, and too much candy. I keep meaning to learn how to really use beans.  I mean, I use them now and then, but I should soak and freeze batches, or something, they really are so versatile.  And I have a rice cooker, and I love oatmeal.  I guess the first step would be to take stock of which appliances I need, and which I don't, I have way too many cooking appliances.

So anyway, gah.  Oh, and after promising me he would fax the referral to UCSF on  Monday, Dr. Shithead told me it would be out by Friday.  UGH.  I already faxed stuff yesterday (Tuesday), because he TOLD me he was definitely faxing it Monday!  And he had to throw in that he couldn't see what UCSF could do that HE wouldn't already have thought of.  This is the man who does research on Google right in front of me.  I am always far more up to date on migraine treatments than he.  Whatever.  Passive aggressive shmuck.   Seriously, a passive aggressive Dr?  Could there be a worse type of MD to try to develop a relationship with?  And why wouldn't he want me to see a headache specialist after I have been having migraines for over 35 years?  Pussy.

I am his SUPAH DUPAH  NUMBAH ONE migraine patient.  Awesome for a teaching hospital, I am his walking, talking "refractory" specimen.  But he no longer has any idea what to do with me.  And I guess what this is really going to boil down to is poly-pharmacy for my migraines, as well as the BP.  He wouldn't be able to handle a poly-pharmacy approach.

I just have been out of it.  Almost 100% because of the nortriptyline, I am pretty sure.  It takes two weeks for it to be totally out of my system.  

 This is the worst period of migraines I have ever experienced, bar none.  Since last I filled you in, I also tried an stopped using propranolol, because it was clearly working as well as a sugar pill for me.  Next, I tried atenolol, which is in the same class of meds as propranolol (beta blockers), but it gave me a rare side effect: bruxism.  Because of my response to the nortriptyline, other tricyclics are also out of the question.

ANYWAY. I wanted to get back into posting items I bought.  It is an enjoyable pastime for the acquisitive Bipolar part of me, even though this time, it was all full price.  And it gives me something to riff off of, if I am desperate.

First, I was recently pointed towards a website I really like: Dog is Good.  First, I tried their t shirt grab bag: pay $25, and get three random ts. I get a tank top with bling, a light weight logo tshirt, and a tshirt with a logo that actually won a national pet product design contest: KNOW DOG, KNOW JOY, KNOW LOVE.  All very cute, and fun because of the surprise aspect.

Then on FacebookPJs, with a Frenchie on the top, "Le Chien Est Bon."  Very cute.  There is a Frenchie on the top:

There are nice details on it, like ribbon piping around the ankle, from which the hem falls away into a serge stitch hem, so a little ruffling.  And the same with the top.

Now, I really only have a bunch of new costume jewelry to show, but I am a real sucker for costume jewelry.  Unfortunately, one of my favorite necklaces' coating has rubbed off, and now the nickel is exposed to my nickel-allergic skin.

I have a pair of earrings and a necklace that are made by Kerfufle Jewelry, which I bought from one of my favorite little boutiques, Eni-thing, which supports local handmade products.  I bought the earrings first:

It's kind of hard to see, but they are small coin-like hammered metal.  I bought this necklace later:

To be honest, I go back an forth about this pendant.  Sometimes I think it is really cool, other times too garish.  Each strand that goes up to the fastener is different strand one side made of those coin-like beads, as well as a crystal strand.  But it holds up pretty well with a very simple top, because it would be too much for a pattern, imo.

On another visit at Eni-thing, I got a very inexpensive blingy elasticized bracelet.  Very simple but it goes with a lot of things:

Another fun set I collected was the Betsey Johnson French Puppy series.  I got the pendant, both pair of earrings, and best of all, the almost impossible to find charm bracelet:

There are these cute asymmetric dangle earrings, plus there is post version with the same charm: 

I also got a pendant from the same series, but it basically the same Frenchie charm as the earrings, just larger.

I also got some cool t shirts besides those from Dog is Good.  One was from Imogen Heap's Ellipse tour.  Mine actually has a white tree on a white background which is cool up close, but un-photographable, so this is just to give you an idea of the pattern: 

I also bought a cute Honest Kitchen t-shirt.  The Honest Kitchen is the freeze-dried food I feed my Frenchie, Violet.  This one says "Raw + Love = THK:

Wow. Quite a post.  

And none of it that interesting.

Blog fatigue

Hey!  I haven't been around for a while, but there are a few reasons for that.  I have been having horrific headaches, and a couple of mood bobbles and when I have had the energy to blog, I blog on a support site for the crazies.

When I just feel like splatting words onto a page, as a writing exercise, I have been using 750words.com.  A great place to write garbage safely. I still fixate on myself, too much, I need to be more conscious of having an idea or topic upon which to riff.

So with all the writing I was doing here in December, followed by my spreading my writing efforts on other websites, and the headaches, I have been neglecting this blog.

Well, I hope to both get back into the "What I wore," and thrift shop finds. I do believe I haven't shown you some of my final finds before this total collapse of my health.  Not to mention general the discussions about body image and BP illness.  I can sense it will be coming soon....

Sinking feelings

"I was more at the point where I felt like I wanted to be dead, but wasn't thinking about acting on it. I didn't have any plans or desire to do it myself. I just wanted to stop existing."  -Me, February 13, 2011

So I off-handedly shared a major crisis in my life on a thread at Crazyboards Sunday.  It didn't even bother me when I wrote it.  Later, when I went back to the thread, and saw it, it made me do a double take.  So blase, this has happened so many times, I think I know just what to expect.

My stomach dropped at rereading this hubris, this nonchalant dismissal of a time when I longed for death, as just "one of those things."  To be clear, I am NOT longing for death at the moment, exactly the opposite.  I would hardly use a forum to announce my impending suicide where people know me in person, and how to find me,   I may be crazy, but I'm relatively intelligent.

It isn't that I am depressed at this moment.  It is more that I am afraid.  I feel like something may be stirring in Crazyland, but I can't tell for sure.  Is it a bad mood? Might it be a side effect of medication?  Or am I just due for a visit from the Mood Fairy?

Or perhaps my DH deserved to have his head bitten off this afternoon.  Yes, I have snapped at him for the exact behavior before.  But this afternoon I was very assertive about explaining what about a particular behavior bothered me so much.  On the one hand, I interpreted in the most negative way possible.  On the other, he admitted given the language he uses, he can understand how I might come to make that interpretation.

But irritability could be a sign of a mood swing in any direction, regardless of our eventually coming to an understanding.  It's the fact that I initiated the discussion with anger that is different and troubling.

I will never entirely know what to expect.  Bipolar is a difficult disease to treat.  Its patterns change over time, confounding previously accepted truths.  Drugs that work for years poop out, and drugs that don't work can make one even crazier than before taking the medicaton.  I blandly assume that I have learned how to recognize a pattern or rhythm to help me anticipate episodes, to cut them off at the pass, so to speak, before they become too bad.

Then, suddenly, my brain decides it is time to clean house, and throw out all the knowledge, patterns, and tips I have accumulated over time, and make a fresh start.  New types of episodes.  More instability.

I can remember the year to which I so indifferently referred yesterday so distinctly.  I had been laid off, yet was still teaching another semester at that school before I left, so that wasn't fun.  The day I was laid off was also the day I had evacuated a busload of teenagers from the school campus, as wildfires raced towards it.  The next day, I heard about the murder of my friend.  Then came the week+ hospitalization for my kidneys.  Followed by very, very severe depression.    I ended up calling a crisis line for the first time in my life.

The first few psychiatrists gave me medications that either sent me into a manic frenzy, or were toxic to me.  I ran out of money. Next stop, a crash landing in my parents' basement.  I was so ashamed, and my mother made sure I knew she was ashamed of me, too.  Her verbal brutality was just one more thing to hasten my downward spiral.  And the headaches.  Never forget the headaches.

Awful.  I remember thoughts: "It would just be so much easier if I died.  If I just went to sleep and never woke up."  I never acted on it.  I think there was only one time I was ever truly serious about taking action to bring about my own death, and that was a depressive episode that turned into a mixed episode.  But that was several years in the future.  This episode's theme was inertia.  Hunger and inertia.  I ate at night, to avoid my mother.  I lived at night, to avoid my family.  My dog, Bess, would lie next to me on the bed all day as I slept and hid, if I needed her to.  She was my best friend.  I never want to be without a dog if I am depressed again, even with my husband around.  No person near me can understand the place I am living when I am so depressed.  I need a dog to just shower me with love and affection when I am wanting to die, because it is such a simple straight-forward love, it is easy to return.  No baggage.

And there's more.  I have been on a new medication, a type of anti-depressant, a tricyclic. I actually am not taking it for depression, but to treat my intractable migraines.  I was quite excited to try it, it was the first drug of this "class" of medications I had ever tried.  I have basically tried multiple versions of all the other classes that my body will tolerate.   Ironically, I seem to have magically stopped my standard rhythm of migraines 2 out of 3 days as soon as I started the new medication.  Sheer coincidence, it actually still needs time before it will start working.  But it has coincided with a 13 day period when I have only had two bad headaches and a three or four of mild ones.  The first 5 days, I didn't have *any* type of migraine (migraine is a disease, the headache is just the worset symptom of it).  I am still suffering from too many headaches.  But less pain is less pain.

But with this exciting new (to me) class of medication, comes a caveat: While the amount of tricyclic used to prevent migraine is quite small compared to the therapeutic dose necessary to treat depression, as a rule of thumb, anti-depressants + bipolar =  not a good thing.  This is one of those rare instances where I have run out of other options to try to stop headaches that are ruining my quality of life.  We are trying to delicately balance contraindicated treatments, hoping we can find the magic amalgam that will help with my head, but not hurt my mental stability.

So while we wait to see if the tricyclic helps, we also are watching closely for signs that it might be activating my bipolar illness:  That is, triggering a mood swing.  My doctors biggest concerns are that I have any lability of mood at all.  My biggest concern is having a mixed episode:  Mixed episodes are kind of like having a pocket-Hell that you are forced to carry around, and you have to negotiate life and cope with the havoc Hell is creating at the same time.  No one else can see Hell in your pocket, you just seem flat out insane.  Which I am.  And part of that insanity is believing that others intentionally try to do everything they can to provoke Hell into bursting out of my pocket, and breaking things, forcing words that I know are dangerous even as they fly out of my mouth to come pourng out, throwing things, berating myself and my loved ones.  Of course, I understand intellectually I am the one doing those things.  But my intellect is being over-ridden by sick brain.

As a reasult every time I feel a petty thought, or am irritated, or tear up, or get overly excited about things, I begin to worry.

Usually, when I talk about depression, it is something in my past.  My last one was a brief one in 2001.  I almost had forgotten what it felt like. But re-reading the sentence I quoted above makes my stomach clench, makes me hyperventilate, makes me want to cover my head with a pillow.  It made me remember a tiny inkling of what it was like, and now I am scared that the reason I can suddenly so closely identify with that feeling is that I am headed in a bad direction.

Ending 2010: Deflation #reverb10

Well, it is the New Year.  I admittedly threw over the final set of prompts.  I was tired of their sameness, and while self-reflection is good, this exercise was beginning to strike me more as self-absorption.

The year ended with a completely crushing disappointment for me.  Atenolol, the medication to which I switched two weeks ago in my attempt to control my migraines, started causing side effects that were intolerable, and/or precursors of more severe side effects.  I left a message for my neurologist on Friday, Dec. 31, knowing he wasn't expected back in the office until January 4.  I knew I couldn't stop this medication cold turkey without endangering myself, so I thought I would have to wait until Tuesday, and just cope with the side effects, making sure they did not take a turn for the worse.

So I was surprised that he called me at 9:30 PM on New Year's Eve; perhaps he was the Neurologist On-Call for the evening, but he uncharacteristically checked his messages on a Friday.  He told me to titrate of the atenolol.  I already had an appointment scheduled for mid-February, but I said to him I guessed I should reschedule the appointment for an earlier date.  He began to hem and haw a little, and said something like, "I am always glad to see you, we can talk about the frequency of your headaches.   I really think you should go back on Depakote in the fall."  First of all, no.   I will not go back on Depakote, and I have told him that repeatedly.   But his message was clear.  There is nothing else left in his pharmacological arsenal for me to try.

I had thought I was going to try the SSRI Cymbalta, until my psychiatrist nixed it, seemingly out of nowhere.  He is now adamantly opposed to my using it, even though he told me in early May that the dose of Cymbalta used for migraine were so tiny that it would have no activating effect on my mood.  SSRIs are generally no-nos for bipolar people, which was the whole point of that visit, to see if he thought I could handle it.  I have in my notes that he said I could.  He either changed his mind, or forgot, but it made me feel foolish.  I really don't like to give the impression that I am pushing around my doctors (not that it doesn't happen).  But this time I really wasn't, I was suggesting a medication that I have a record of his permitting.

But the long and short of it is, I have reached the end of the medication merry-go-round.  With SSRIs eliminated, there is no other class of medication left to try as prophylaxis.  I am now officially reliant solely on OTC analgesics, sumatriptan, and medical cannabis.  As far as my neurologist is concerned, I can visit him sooner, or I can visit him later, there is nothing more he can do.  I am going to beg and plead for a referral to the UCSF Headache Clinic. I have no idea if they have anything to offer, but they are the West Coast center for people like me.

Planner that I am, I already have contingency plans in case the UCSF Clinic, to which I have not yet been referred, is unable to help me.

So yeah.  Way to end 2010.

Which just puts me in a morose mood for all of the challenges we already know we must face in 2011.  I have foot surgery again.  Then my husband has brain surgery.  And at some point in 2011, I need to get over to Berkeley medical school, to have an eye I am losing vision in examined, and treated.

If all those events go smoothly, 2011 holds a lot of promise.  But it also holds a lot of pitfalls.  It seems as if the entire duration of my relationship with DH has been stumbling from one drama to the next.  Our health issues have definitely meant there are dimensions to cope with beyond the usual loving and cherishing we would naturally provide each other:  There is frustration and fear, for starters.

I burnt a candle on the Solstice, and again on the New Year, to send up all the bad vibrations and echoes of 2010 into the ether.  I have my superstitions.  Although if you ask me, I'll admit, I don't truly believe in them.  But I like rituals, and superstitions are ripe for ritual.   Rituals give me a false sense of control that is comforting, in spite of my knowing I am fooling myself.

2011 is also the Chinese year of the Rabbit, which is my birth sign.  I turn 48.   I fall under the water element, and am supposed to have a good career year.  That would be nice for a change.

I know good things are in store, too.  I am looking forward to further involvement in the Medical Cannabis community.  Our tenth wedding anniversary is a huge milestone for us.  And my third Oregon Country Fair is another anniversary of sorts.  My French Bulldog Violet turned 7 on New Year's day, which is always auspicious.

Now if I could just locate my wallet....

Sight Seeing: Prompts 22, 23, 24 #reverb10

Hi all!  I have been sick a lot this month, so I am crazy busy trying to get these prompts done.  Sorry if parts of the next few blog posts are garbled.   We're in the stretch!

Dec.  22:  Travel.  How did you travel in 2010?  How and/or where would you like to travel this year?  -Tara Hunt   

In 2010, I travelled almost exclusively by Prius, with the exception of about 200 miles.  There was a cab ride back from the airport in January.  My friend gave me a lift to my first post-op appointment for my foot.  A few van rides and cab rides back and forth between my car dealership and my home.  A bike ride to go pick up the Prius from the dealership.  And finally, a tow truck, that carried my dead Prius to a Eugene Toyota Dealership (yes, another dealership).

I only travelled a little this year.  In January, I made a brief trip back to my hometown, Pittsburgh, to spend time with my parents, sisters, and niece.   The next travel of any sort was the Oregon Country Fair, in July.  I drove myself up and back in two day increments, spending the night in Yreka on the northern drive, and Corning on the southern one.

In August, after my husband was offered a great job after almost 11 months of unemployment, we took a short trip to Lassen Volcanic National Park.  While we had to cut our visit short, the reason for this is going to make me jump to the prompt after the next one.  Don't worry, I'll get back to the one I skipped over.

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Dec. 24:  Everything's OK.  What was the best moment that could? serve as proof that everything is going to be alright [sic]?  And how will you incorporate the discovery into the year ahead?  -Kate Inglis


If "Fraught" was the word to describe 2010, August could be considered its zenith.  We were really starting to stretch our finances to the limit.  We were discussing our options:  I had a small IRA I could sell, and DH had stocks.

Meanwhile, DH's seizures were becoming stronger, and more frequent.  His new medication, one that has been on the market for less than a year, gave him such bad side effects that sometimes he had to crawl to get around the house.

DH and his neurosurgeon, thinking that there were no more job opportunities out there for the moment, set a date for surgery.  Brain surgery that is.  Surgery that involves cutting a door in his skull, wrapping his brain with a sheet of electrodes, and then purposefully stimulating those electrodes to cause him to have seizures, in the hope of pinpointing the part of his brain where the wiring went wrong, the "focus."  At the end of the week, they would remove the sheet, and any brain they felt might be the problem (which they warned us might be golf-ball sized), and of course, put his skull back together.  Recovery is 4-6 weeks.

While DH and his neurosurgeon seemed to be handling events with aplomb, I was falling apart.  Looking at my mood chart shows I was pretty freaked out.  The chances of death were as good as nil, but I still dreaded life without him.  I also feared he would come home with a new personality, not the man I married.  I still do fear that a bit, and it turns out, he worries about it too.

The surgery date was set late in August.  I was buying pajamas, and teaching myself cribbage so we could play it in the hospital during his week stay.  About two weeks before the date, DH got a call from a financial services company:  They were interested in his experience in UI (User Interface).  Suddenly, it became a race.  Could DH get an offer before he was admitted to the hospital?

8 days before his scheduled surgery, DH received his offer.   He was so excited, he forgot to sign and fax in his contract, he just read it.  When we were on our celebratory trip to Lassen, just as we were about to head out for the day, DH got a call from his new job.  Where was his contract?   We made a dash to Redding, the nearest town of any size, and waited for a fax of another copy of his contract, had him sign it, fax it back in, then wait for confirmation of his new workplace's receipt of the document.  It took 3 tries, but at last we did it!

It had seemed like a horrible last minute nightmare when we first realized we had to get the contract in, or he wouldn't be able to start for another few weeks.  But when we knew that contract was in their hands, suddenly, DH was officially employed.   The contract was signed, the "i"s dotted, and the "t"s crossed.  We had made it.  We had lived on umemployment that lasted 6 months, and then on our savings alone for another 4 months. We are playing catch up a little with our debt, but as of January 6, all of our credit cards will be back to zero.  We have another round of surgeries and health problems to look forward to in 2011, but the outlook is so much rosier, with DH working, my foot nearly healed (meaning I can get back to my work), and really great health insurance.  

We are back.

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Dec. 23:  New name. Let's meet again, for the first time.  [Cassandra]If you could introduce yourself to strangers by another name for just one day, what would it be, and why?  -Becca Wilcott


Hello, my name is Cassandra.  I am the archetype of the truth teller who is ignored.  For predicting the truth time and time again, in other people's minds, I am a foreteller of doom, rather than a seer of the inevitable consequences of their own actions. I am falsely labeled "mad" when I speak truths they do not want to hear.  But when I am truly waxing crazy, my truths become harsher, and bitter.  They are just as often true.  But it is when I predict bad outcomes that come true that people are the most scared of me.

I'm not psychic.  I am a "student" of behavior.  I am a studier, a watcher, drawn to details, a collector of patterns.  It is true, everyone is different.  But what makes them different is just the differing weights of the ingredients  they share with Everyone else.  There are only so many ingredients out of which to make people, although there are always one or two without raisins, and others with nuts.  

I learned about human behavior from an expert, a psychopharmacologist who studied biologically based mental illnesses, AKA, my father.  He taught me what was normal, what was not.  He showed me the rigid patterns in which people think, the way the very words they use to conceal give them away.  I learned there were a limited array of behaviours. Some are so dreadful that it is best not to think about them.  But for all of them, it is as the old saw goes, there is nothing new on this Earth.

Sometimes, I scare and anger people with my assessments of their friends and what I foresee as the outcome of their actions.  The more often I am correct, the harder they push me away.

My plan for now is to lie low, I refuse to fall victim to any scheming Clytemnestra.  Another meaning for the name Cassandra is "defender,"  and I have always been someone who tries to defend the rights of the most marginalized members of society.   Sometimes defending is altruistic, such as helping prisoners make legal appeals,.  Other times it just means protecting myself from the consequences of mishaps created by my own peculiar recipe of perspicacity and crazy.

Love and Spontaneity #reverb10

Dec. 16 Prompt: Friendship. How has a friend changed you or your perspective on the world this year? Was this change gradual, or a sudden burst? -Martha Mihalik

Dec. 17 Prompt: Lesson learned. What was the best thing you learned about yourself this past year? And how will you apply that lesson going forward? -Tara Weaver

Perfect.  Just as I sit down to write this, another headache is coming slamming in.  The barometer is changing, and like many migraneurs, barometer changes can give me headaches.  More often than not they do.  But I had gotten away with the first 24 hours of this storm, so I had hoped maybe I would be spared.  Sigh.

I couldn't decide how to approach the friendship prompt.  I feel like I have endured a lot this year, but most of it was spent in our duplex, just my husband and myself.   It was much more a year of physical and emotional stress than it was of perspective change.  I know that stress and mayhem are supposed to build character, but my character can only be built up so much before it topples me with its weightiness.  I know how to get through shitty times, because so much of my life has been shitty.  That sounds awful, and I should make it clear I am very happy.   But that is almost entirely because of my marriage.  This is not to disparage my friends.   And perhaps it is just a way of pointing out how dear of a friend my husband is to me.  But he was the person's whose shoulder I sobbed when it all became too much.   And vice versa, frankly.  

We have become better friends this year.  We both talk about it a lot:  It is as if we have just met each other again, 10 years later.  Again, a horrible year in terms of events, a fantastic year in terms of my marriage.  Our family is mostly on the East Coast.  I have a sister in Dallas, and a sister in Australia.  We are a pretty self-contained unit, and both being shy introverts, we aren't the most social people, so we really rely on each other.  I actually am more of a social person than he, which is almost scary.  

Although I do think my sociability would be enhanced if I felt I could confidently accept invitations in advance.  But I always risk being sick the day of.  Which cleverly segues into my lesson learned in 2010.  Heh.

It is hard to get me to do things at the spur of the moment.  Yet I have more "memorable" moments when I say "Fuck it, let's do it," than when I try to plan ahead.   I mentioned in an earlier post that I plan compulsively, and while I do not have OCD, it is considered something I need to pay attention to as part of my overall mental health.  Of course, keeping an eye on over-planning is kind of a Catch-22 for me, but I do as best I can.

Whenever I say, "Okay, let's do it," I have fun.  Always.  Whether it is to run to a restaurant at the last minute, or catch a movie, stuff that may not seem very bold to you.   But I can't even be sure I will be functional the next day, so planning for things is no good.   In fact, I know I use the obsessive planning as a defense mechanism for my lack of control over my health.  

And I also have a tendency to "hoard" the hours I am not in pain.  Sometimes I just enjoy hanging out doing not much, when I am feeling all right.  Add that time to the times I am down with headaches, and that leaves not many opportunities for spontaneity.  

Spontaneity for me could mean deciding on the spur of the moment to order a fun dinner from Whole Foods for New Year's Eve.  Then ordering it two weeks ahead of time.  But hey, I ordered it as soon as I thought of it!  And some of the joy I do find in planning comes from exactly this type of anticipation, so I actually was not being as much of a freak as usual.

But it can also mean moments of truly plunging in, and challenging myself, such as sharing the communal showers at the Oregon Country Fair, and overcoming just a little bit of my body-hatred.  It also meant I decided to go to a class on the Medical Cannabis Industry.  And at the moment, I am annoyed, because I had another great example of when taking a chance did something positive, and the migraine has knocked it out of my head.  Grrr.  Planning does have its place, I guess.

I will never be able to stop planning entirely.  I see the same behavior in other family members!  But I am trying to take risks, however tame they may seem to others.  

In fact, I just decided to let my hair grow out its natural color (with plenty of gray), and made the hair appointment for early next week!   And earlier that same day, I am going to stop off at my favorite tattoo shop to discuss my next tattoo.  Wheeee!

Baby steps, people.

Out of Wisdom Comes Pain and Lust #reverb10

Dec 10 prompt:

Wisdom. What was the wisest decision you made this year, and how did it play out?  -Susannah Conway

The wisest decision I made this year has lead to literally days of pain.  But it was still the right choice for my marriage, and I am glad I made it.

As a chronic migraneur, I am always on multiple medications.  This is in addition to my psychiatric treatments, although the medications for mental illness and neurological disorders share a huge overlap.  Sometimes, I find meds that work to lower the frequency of my headaches.  Unfortunately, once a headache arrives, treatments, even opiates, are hit and miss.

I am not going to go into a long discussion about all my treatments, but one in particular has worked for me on a number of occasions for a few years at a time before pooping out on me:  the anti-convulsant, Depakote.  After several year long "vacations" from Depakote on other medications, I would repeatedly find myself saying to my neurologist that I wanted to try it again. It would always improve the frequency of headaches for a while, then once again poop out.  But when it worked, it was the best medication I had tried.  

Besides the issue of repeatedly pooping out on me, Depakote can cause severe side effects. Excessive weight gain is the most infamous one.   My experience has been a little less straight-forward, but ultimately ended with impressive weight gain.    Depakote can suddenly, after working well for years, destroy one's pancreas, and make one a Type I diabetic.   It can cause severe liver damage.

But the side effect that became the most instrusive and upsetting was that Depakote totally killed my libido stone dead.  I didn't like to even be touched, although of course I was more tolerant of DH's touch than anyone else's.   Still, "wrapped in cotton wool" and "bound in plastic wrap" are the phrases he has used over and over to describe what I was like on Depakote.

People may realize that headaches are incapacitating, but they often do not realize how incapacitating drug side effects can be.  The side effects of the medication become just one more aspect of being chronically ill.  Deciding what side effects you can tolerate, or are willing to put up with, always requires a risk/benefit analaysis.

By February of 2010, given my headaches, medication side-effects, and foot surgery, sex was almost non-existant in our marriage.  Like many people, early in our relationship, sex had been a constant.  But over 10+ years, my headaches have gotten more frequent and harder to treat.  So not tonight, dear.  And then the medication I took destroyed any interest I had at all.  I felt obliged to be active as much as I could, but it was so hard.  I knew DH was torn, he didn't want me to be in pain.  But man, did he hate Depakote.

After watching my husband's misery, I decided that for the sake of our marriage, I would never again take Depakote, even though it still is the medication that has worked best for me in terms of my headaches.  I had begun to feel like I wasn't upholding my end of the marriage.  I am not saying that there is a quid pro quo for sex, but sex is a very important part of a marriage, there is no denying it.  People who know me know that I do not generally talk about my sex life with anyone, but this is not about sex as an explicit act, but instead as a component of married life.  It is upsetting and humiliating to not be as sexually available to your partner as you would like, and feel s/he deserves.

Since we were together 24/7 throughout most of 2010, we were able to delve into this issue in detail, and re-evaluate what our expectations were for each other in this marriage, and check to see that we were still on the same page.  I knew intellectually I wanted to be on the same emotional page as DH, but I just couldn't do it with the chemical chastity belt that Depakote had become.  Most Drs. consider this a completely valid reason for discontinuing a medication, so I knew my neurologist would accept it.  My neurologist is as desperate and clueless about what to do next as I am, and allows me to largely direct my own treatment.  The fact that Depakote is also used for psychiatric treatment of bipolar illness means that my psychiatrist must also be kept on top of what is going on, but Depakote has never had a psychiatric effect for me, and he allows me to raise it and lower it without consulting him first.

Plus I was beginning to wonder whether or not it wasn't already pooping out, anyway.  My headaches were definitely becoming more frequent.

So in June, with the Dr.'s blessing, I began to titrate (that is, change the dosage little by little, to allow my body time to adjust) off the Depakote, and titrate onto blood pressure medication, propranolol, that is also widely used as migraine prophylaxis.  You must always titrate off of anti-seizure medications, or you risk having severe seizures, even if you weren't taking them for seizures in the first place.

I immediately made the rather depressing discovery that yes, in fact, the Depakote was helping.  My headaches increased in frequency and severity the lower my dosage went.  I was prepared for a bad period, there is often a short period where everything gets much much worse when you are titrating onto a medication, even if it ultimately proves successful.  But the bad period didn't end.

And now, I am Depakote free.  I am having headaches more days than not, and this has been the case since July.  At first, while almost daily, they often were not severe, or only lasted a few hours.  The further in time I moved forward from my last dose of Depakote, the more severe the headaches have become.  And they continue to be present more days than not.  The propranolol has been a bust.  In January I will be trying another medication for the first time, the SSRI Cymbalta.  When used for migraines, the dose is so comparatively tiny, there is no real concern of its cross-reacting with my psychiatric medications.

But even with the failure of the propranolol, it has been totally worth it.  I knew that even as I huddled over a waste-basket, heaving for hours on end on Wednesday night, head pounding, eyes streaming with tears.  

Of course, when I am curled up in pain, I am not exactly the most sexual creature.  But when I am pain free these days, I now realize it was if my entire sense of touch had been severely dampened.  The fact that I can tolerate DH's arms around me while I am sick, and enjoy them when I am not, is a shockingly huge and happy change for both of us.  While I am sick too often these days to speak honestly about second honeymoons, we are definitely both feeling a renewed sense of enjoyment and emotional intimacy.  And when I am feeling well, well, I'll be gross, and admit sex is so much better!  Sex actually felt like a chore on Depakote.

So those are my early unexpected gifts for our 10th wedding anniversary this July:  Accepting pain, and regaining intimacy.

Community: Mentally Interesting #reverb10

Prompt #7 Community.  Where have you discovered community, online or otherwise, in 2010?  What community would you like to join, create or more deeply connect with in 2011? -Cali Harris

Even I am getting tired of hearing myself say that 2010 was a difficult year for me.  Unfortunately, that doesn't change the fact that it was.

Along with my DH's unemployment, and my long term immobilization by surgery, I started to have mood swings, and was frankly mildly depressed through the part of the of the year when I was most immobile.

And like some other people with bipolar, with the changes in the season and the changes of light, come more mood swings.   In the spring, I become hypomanic.  In the summer, I tend to have a mixed episode.  Then hypomania returns sometime around Xmas (yes, I'm keeping an eye on it, but it can still creep up on you).  Solstices, in particular, do not tend to be happy times for me.

I began to worry that discussing every troubling thought that crossed my mind with my DH was not healthy for either our marriage or us.  But even if I wanted to go to therapy, which I did not, I was trapped in the house by my foot. I needed someone who could listen to some of my more crazy thoughts without freaking out.

So I turned to an online bulletin board on which I had lurked now and then, CrazyBoards.org. (CB) For the first time, I stopped lurking, and began to venture forth into the discussions, commenting, comparing, sharing my experience.  There are people with all types of illness, and all levels of suffering.  People living with anything from ADHD to psychoses (although I don't want to imply there is a hierarchy of mental illnesses).  I have mentioned I am bipolar, and have migraine.  My official diagnosis is Bipolar NOS, which is when the illness doesn't quite fit into either the Bipolar I or II compartments.

One of the great things about CB is that we don't have to play nice.  It is accepted that sometimes people are crazy, and other times, someone might need a stern talking to, to get help.  People don't hesitate to say what they think, however unpleasant.  The oft repeated mantra is "we don't have to walk on eggshells here."  That is in contrast to most of the other mental illness support boards.  Those boards will ban people for confrontation or being negative.  The average board for the mentally ill is a much more strictly moderated, polite, non-confrontational, warm and fuzzy place.

One of the first rules of CB's user agreement stipulates, "You won't find that your every post is responded to with feigned warm fuzziness and cyberhugs.  Frankly, we think cyberhugs suck."  Definitely the place for a mentally-ill cynic, who has dealt with too much shit in her life. 

For that reason the CB boards are considerably more real, helpful, genuine, and brutal than the average milquetoast site.  To be honest, it is a fascinating place.  The population is generally very bright, and the more idiotic people tend to get run off rather quickly.  The focus is on mental illness, and the forums are divided and sub-divided into conditions, or medications, but threads can and do take sharp detours.  We discuss our relationships.  We discuss our hobbies.  We fight, we form cliques.  And we confide and admit to each other our hallucinations and delusions.

My favorite feature of Crazyboards.org is the community blog.  One of the really bad, crazy things I do when I am hypo-manic, manic, or having a mixed-episode, is I post information that is very revealing about myself, but also about other people interacting with me during these frenzies.  I embarrass some people, and piss other people off to the point they break off friendships.  Sadly, this is often to my benefit, even when I handled the situations anywhere from poorly to thoughtlessly.  But until accidentally freeing myself from some of my relationships, I never realized how much I had been tamping down my personality, not to mention opinions, around people I considered friends.  It is only in retrospect that I see that those friendships were already fraying at the edges, and the biggest red flag should have been that I no longer felt like I could be myself around them.

CBs provides a safe place to blog.  One can control who can and cannot see with much more precision that one can on Blogger.  I feel like if I am indiscreet there, it is a little safer.  It is definitely a form of self-therapy.

Next year, I hope to dip my toes into the Medical Marijuana activist community.  I know from prior activism that that is going to mean inserting myself into the community of activists working on that problem.  My fellow dirty hippies.  2011 is definitely the year of Cannabis.

One Word: Fraught to Healing #reverb10

When I first saw this challenge on nakedjen's blog, before I even finished the sentence, the word "Fraught" popped into my mind.  It seems that in each decade of my life, there has been one year that is awful, stressful, disastrous.  My decennial Annus Horribilis to steal a phrase from Elizabeth II.  This appears to be the Annus Horribilus of my 40s.

This is indeed a year that has been fraught with drama and difficulties, as well as illness for my DH and me.  In January of 2010, my DH was entering his 3rd month of unemployment, and I had just quit my job working with dogs to have surgery to reconstruct my foot.   January 13th, I had the surgery.   In early 2011, I will have surgery to remove the metal installed in the first operation. 

DH was housebound while I recovered, because of his epilepsy (i.e., I am the sole driver in the family).  My recovery was slow, painful, and depressing.  Throughout the year, my husband and I suffered from worsening of our respective neurological illnesses. I also had several mood swings, which were particularly "fraught" with concern at the time, as I tend to spend money when my mood changes, and we had no income other than unemployment insurance, and our savings.  

Our car broke down and needed major repairs twice within two months.  We dedicated a credit card to the care of the car, and have been paying off big chunks every month, but we had always paid off our credit cards each month, 

DH had a job in May for 3 weeks that was a disaster, and which he quit.  His boss lied to the Unemployment Insurance dept, and said DH had been fired for cause, thus making sure my husband could not collect unemployment benefits.  DH was too late getting his personnel records, which demonstrated otherwise, to file an appeal.  At that point, we were living on savings alone.

As the summer progressed, DH's seizures became so severe, that we came to the decision that he was going to go ahead with a new surgical procedure that has a 50/50 chance of stopping or improving his seizures.  Yes, he is at the point that those odds actually look good.  The surgery was scheduled for late August.  I began to fall apart, as my bipolar illness makes stress extremely difficult for me to handle.

Literally 6 days before the surgery was scheduled, my DH received an offer that was more than equivalent to his last job: It has better hours, clearer expectations, and better benefits than his previous job.  It was such a relief.  We spent the next couple of weeks purchasing items and paying bills we had been stalling on until we had an income again.  The job was not willing to delay his start date for a few months so that he could have surgery, so he went for it.  

So far this fall, he has had two seizures at work, both resulting in hospitalizations.  I can't even remember how many hospitalizations he has had this year, and he goes in only for a tiny percentage of his seizures.  His neurosurgeon has insisted that DH cannot wait until next fall to have his surgery.  He will probably have it in early 2011.

As I have said, my neurological condition, migraine, and my bipolar illness have both been flaring this year, making it very difficult for me to even look for work. One more stone was that we had very expensive dental work done right before DH was hired.  Even our French Bulldog, Violet has had to have a root canal.

And as the final insult, Friday, I was bitten by a Black Widow Spider. While not deadly to the average adult, the venom in the bite is a neurotoxin, and provides quite a wallop to the system.  Headache, tremor, vomiting, heavy sweating, cramping, dizziness, diarrhea, 

We have had at least 40 doctor visits between the two of us this year.  Easily.  I have had days with multiple appointments several times this year.  The very fortunate part of all of this for us was that we were able to afford COBRA payments for our health insurance, a Cadillac Plan that included vision and dental.  Still, copays for medications and doctors' visits add up.

But even in this terrible year, there were moments of contentment and joy that auger well for 2011.  With both of us in the house 24 hours a day, we could have driven each other off the deep end.  Instead, my husband and I became closer than we have ever been.   This has been a year that has proofed our marriage.  Oddly, we have never been happier.

In July I had the joy of experiencing my second Oregon Country Fair with one of my closest friends, nakedjen.  It is hard to really describe the OCF to people, because so much of what makes it wonderful is the ambiance, which cannot be translated into words.  But if you consider yourself a dirty hippie, a faerie, or a fan of yummy food, original performers, soul-refreshing encounters, and glitter, you should definitely take a look into the Fair.  I can't wait until next July. 

But it will come as a surprise to no one, that the word I hope to be using to describe the year of 2011 next December is "Healing."  Not only from our many surgeries, but also emotionally from the stress and traumas of this year.  At times it seemed the blows would never end.  Also, more concretely, financially, as we used up our savings.  We are fortunate to have saved so much, we needed every penny.  

Healing is also a direction I may be pursuing professionally.  I have attended a course at Oaksterdam University and intend to attend more, with an eye towards getting into the medical cannabis industry.  As readers of this blog are well aware, I have benefitted from medical cannabis, and have recently become more active in the medical and recreational legalization movements.  I don't know what I would do, yet.   I liked growing it, but I don't know how I would get a job doing that.  I would like to learn to cook with cannabis, and I could see working in a commercial kitchen.  I also could see bud tending, which is being familiar with the different properties of each strain of cannabis, so as to help patients choose ones that target their conditions.  But I have to choose one of them, I think.  The weekend session I went to this past October was really fun, but unfortunately, I had a migraine for a cooking class I was registered for.  I plan on taking another weekend session in January.  A good start to the new year.

While not related to healing, there are more good things to look forward to:  My French Bulldog turns 7 on New Year's Day.  I plan to return to the Fair in July.  But perhaps most importantly, July 21, 2011 is my DH and my 10th anniversary. 

It is funny how one of the years of my life most fraught with disaster, is probably one of the happiest years of my life.

Dain Bramage and Neurosurgery

[Editor's note:  I noticed that I often write garbled sentences in these blog posts.  This is not just due to poor writing skills, but also because I often post extremely late/early, and wrap up when I feel fatigued enough to sleep.  So my proof reading is often shoddy.  My new policy will be I may go back into posts to correct grammar or spelling without notification.  Content changes will be noted.] 

Well, excitement has abounded at the home of DH and crtclms.  DH was transported from his job to the ER for the second time in 10 days.  This time he didn't hit his head.  The prior seizure, he caught the orbital bone of his eye on the corner of his desk on his way down, which gave him an impressive shiner.  This time, he went into a fugue, during which he wanders around in a semi-conscious state.

So off to the ER I went.  I couldn't find my purse, and during the hunt, I had time to snap a pic.  I know how long it takes them to process him, and expected to arrive before he was released, and this turned out to be true:

So, leaf-type chandelier earrings you have seen; dirty hair pulled up; new lavender top with rhinestone embellishment from recent GW hunt; ancient pair of bleach spattered jeans from dog care; they look worse than usual because I was in a hurry, and pulled on dirty jeans.   One attempt to hide part of the dirt was the boots.  Now, I love these boots, one of my gypsy princess purchases, and really I do understand it is a matter of personal taste, but I saw them and had to buy them.  The velvet inset on the top is very close in color to the sweater:

Ah yes, the infamous computer backdrop.  Hey, sometimes it is the only way I am not too lazy to take the picture.

Anyway, you can see the velvet, with embroidery, trimmed with a narrow floral band.  Tweed laced through, and the seam above the ankle is tweed, too.  I bought these about two years ago, and one of the nice things about them is you can wear them with a longer skirt, or under jeans, and they just look like plain brown boots.

And we are back to the Land of Fucked Up Brains:  This was not only the second time in 10 days I had to go pick DH up from the ER, it was the 2nd time I had to do so with a migraine.  This is not to complain about his timing, but to demonstrate what a fun month we are having generally.  In the fall, my frequent migraines actually morph into "Chronic Daily Headache."   This is not only painful and incapacitating, it is embarrassing:  Headaches are invisible, and how many times in a short period of time would you accept the excuse, "I'm sorry, I have to cancel, I have a headache,"  when this is the 3rd, 4th, or 5th time in a month I have had to cancel?  Only people who know me extremely well can even tell I am in the midst of a headache.  Plus, migraines manifest in a lot of "non-headache" ways, which can ruin any social outing, even without actual pain. Today, for instance, I have been "buzzy" because a weather front is coming in, and migraines are often triggered by weather fronts.  What does "buzzy" mean?  Hard to say, but I can feel things going on in my head.  However, even though it was a term I thought I came up with on my own, I found anyone who has migraines or epilepsy knows what I mean when I say "buzzy," and many already use the term to describe their own cranial happenings.

It is also humiliating as to how it affects my marriage.  "Not tonight, I have a headache" isn't a "line" in my home, it is a pretty much daily occurrence.  While sexual activity as a general rule is helpful to headache patients, that is only the case when they are not in the throws of an actual attack.  It is upsetting and guilt inducing to feel like you are not up to being an equal partner in intimate aspects of your marriage.  I actually quit a medication that was working somewhat at controlling my head, because it totally destroyed my libido, to the extent I didn't even like to be touched.  My neurologist agreed with me my marriage was more important than the medication.

DH has also had horrible, life-altering side-effects from medication.  A lot of people don't realize that when you have a chronic illness, you are not only dealing with the illness itself, but also with the sometimes severe and dangerous side-effects of prescription pharmaceuticals.  This is why I use Cannabis, and why I feel so strongly about protecting its medical use, and legalization in general.

Now, the activity of having to pull myself together to get DH did distract me from the pain a bit, and other than the purse mishap, I got to Stanford pretty quickly.  This is one of the first times I had been to Stanford ER in the early afternoon, usually it has been at night.  ERs are SO much calmer during the day!  DH was awake and alert (he apparently had awoken while being strapped to the gurney).  I actually know how to read the monitor he is attached to now, and all of his vitals, including blood oxygen, were excellent.

The nurses and doctors on call were very nice, because they weren't overwhelmed.  They kept coming in to tell us what stage they were at with DH's release every few minutes, which has never happened before.  Then, the doctor came in, and said DH's neurosurgeon, who is the head of the Stanford Epilepsy Center, wanted to talk to us before we left.  Again, a first.  But we knew seizures were coming too fast and hard.  What we didn't expect was how blunt his Dr. F was.  When he walked into the room, the first thing out of his mouth was, "This is not acceptable."  He is concerned that DH is having so many seizures it may start causing more brain damage, or that he may really hurt himself hitting his head, which DH does regularly, and we have been lucky that a black eye is the worst thing that has ever come of it.

The question for both of us:  What quality of life is acceptable, and what isn't?  Are the number of headaches I have by refusing to take a particular medication worth the physical intimacy, not just sexual, but day to day, I share with my husband, worth it?  How many seizures, how many drug side effects, will my DH be able to tolerate, and still lead some semblance of a normal life?

Monday's ER visit brought this question into sharp relief for DH.  Dr. F informed DH and myself that brain surgery could no longer be postponed until next Fall as we had planned, and that DH's job was now officially secondary to his health.  This is a little scary for us, because what some of you do not know is, DH got his current job a few weeks before I started this blog.  This had been after being laid off for 10 months (he had had one short job that blew up).  It is a fabulous job, that he loves, and we are pretty sure they love him.  We don't want him to lose it, and we frankly can't afford it, especially if DH has the surgery, and we don't resume receiving income after his recovery.

But, he has violent seizures about once a week, and less violent ones one or twice a week.  He can't drive.  He has had seizures on his bike, and on public transportation, so even though he isn't a danger to others, he is actually very likely to get hurt even when not behind the wheel.  He has to take almost all his sick and personal days to recover from seizures.  He has visible hypoxia of the brain (under-oxygenated parts) on his MRIs.

I had to stop working at my job as a doggie daycare provider because my foot was reconstructed in January, and it only now is beginning to feel like a real foot (it takes about a year to totally heal).  So even though my salary was meager, I was at least working.  Now, my foot is not strong enough for dog care, and my headaches are preventing any aspirations of any other part-time work.  I can only work half-time, because of my migraines, and my mood disorder.  Like headaches, bipolar illness is invisible, and like migraine, it limits my life even though it leaves no mark on me physically.  In order to keep myself even somewhat healthy, my p-doc in Pittsburgh told me I should only work part time, or at most, a clerical level job if I were going to work full-time.  So much for that Ivy League education.

The round-about point is, I am bringing in zero income myself.  We might be entirely reliant on an account we were really hoping on not touching.  My only "hope" is that he is eligible for disability from work or the State.  His contract doesn't say he has to have worked there any amount of time in particular to be eligible for their benefits, so we have our fingers crossed, but are prepared for either possibility.  [The old law student in me wanted to abbreviate that to "K," which is a legal shorthand for "contract."]  Because he has only been there a few months, we don't know what kind of leave he is eligible for.  He would be willing to take an unpaid leave, if it meant there would be a job to go back to.  That would wipe out our savings (making Goodwill even more attractive to Ms. Hypo-mania), but we have enough.  As one of my friends said to me yesterday, we can get more money, I am thankful we have what we do.   DH's health is more important than our savings, any day.

We are upper middle class, even given the loss of income and savings during DH's unemployment.  We have had health insurance, either through COBRA, or his new job.  I know it isn't exactly the same as those families who have to declare bankruptcy, and I understand that most of our monetary hit did not come from DH's or my conditions per se.  But the expense of co-pays for meds and treatment, seeing doctors, having surgery (we both will have had surgery in 2010), ER visits, the lost days to migraines, the compulsive spending that often accompanies my mood changes, it helps to chip away at our income.

So that can also be added to the daily cost, in money, body, and spirit, of chronic illness.

Now, I do have purchases and outfits to show you.  And tomorrow is a fundraiser for a Food bank, where I intend to do some Hannukah shopping, and I will come home with other things to show you.  But even the little "fashion" I did have in this post didn't seem to fit the tenor of the post, so I am saving it for this weekend.  As Eddie Izzard would say, "Ciaooooo!"