Wednesday, March 26, 2008

The year of pain.

Well, I wanted to write a year-ending/new beginning post way back in January, when the new year officially began, but I've come to the realization that starting around December I head into brumation (the reptiles have it right!) and don't really come out of it until the start of March or so. Witness the pattern of my last 5 years or so of blog entries, and you'll notice big gaps in posting frequency, the presence of pale, humorless entries during my time of withdrawal, depression, brumation. (I wish I could be reptilian enough to not eat, not move much, and just drink a little water from time to time while waiting for the warmth and light to return to my life.)

So here's my philosophical year-end review. If you're at all medically squeamish, just stop here. I won't tell. ;-)

I call 2007 my Year of Trying to Die.
My Ulcerative Colitis had come out of remission in 2006, and I went to my doctor in SF, she did a colonoscopy, and prescribed me steroid enemas and a triple dose of asacol. (Enemas are evil. That's all I'm going to say on the matter.) (Have I mentioned I have what my friend likes to call a "feces issue?") By December or so, I was still hurting A LOT, but she ran a blood test and found no infection from the results of the blood test, and declared me well, except for some "irritable bowel syndrome" brought on by the "Inflammatory Bowel Disease" (UC--just so you have all the terms) and prescribed me Lomotil, an anti-diarrheal.

So, through December and January, though I was feeling worse and worse, and it got to the point where whenever I ate anything I would be in the bathroom constantly, I didn't call her back since I was "cured." In February of 2007, my GP told me he thought since my symptoms were worsening, that I obviously WASN'T better, and would I go to someone local for a second opinion. I agreed, and said specialist decided to schedule ANOTHER colonoscopy (can I just say here, how bloody unpleasant these are?). He found that I had, indeed, active disease 20 centimeters up my descending colon. Now, it was obvious that the Asacol was not working, and I would NOT do the ever-so-painful steroid enemas again, so he decided that before we brought out the so-called "big guns" of Remicaide or Humera, that we should try oral steroids.

Mind you, I was diagnosed as a bi-polar 10 years or so ago, about a year after the brain surgery (old history--it's just that it's all daisy-chained together, so if you don't know the past you won't understand the present :-/) and that's when it became known that steroids were contraindicated in my case. In other words, steroids are a BIG BAD thing. (I ended up in the hospital with Steroid Psychosis after the surgery, because they used megadoses of them to try to shrink the tumor and compact the tumor to make it easier to remove. Or something.)
Nothing like an extreme psychotic episode while dizzy, disoriented, and partially deaf, to really make your day. Week. Year. Life.
But, I digress. back to the gut.

Since a new form of oral steroid had come out that was supposedly 80% absorbed in the liver after it did its work (and so kept from being "systematic"), Dr. Denigris put me on that. I think TTK and I knew, even before a week had passed, that this was Not A Good Thing. Not only was I weak and in pain, I was snappy, vicious, (more) unpredictable, and generally heading psychotic on the little red and brown steroid bus. This was now about March of 2007, and I was so exhausted and weak that I had to quit my classes a the JC. I was pretty much housebound at this point, and my food options had narrowed to about 8 things. Milk, milk, and more milk, with protein powder and Ovaltine (we call them "Provaltines), baked potato, rice, and fruit. Nausea was a constant companion at this point, as was pain and depression. Thanks, steroids, and body!

I tapered myself off of them, to the dismay of all my doctors, and refused to take them again, EVER. Which now meant that we had tried all the low-level options, and we could now press my insurance company to cover the Remicaide (ahh, now you see! It's all about the money!). Considering the stuff is about $600 a vial, and I need 4 at a time, plus the $5K per visit at a specialist clinic, it's understandable that money would rear its ugly head.

By June I had lost about 25 pounds, and was almost completely homebound--in our filthy little hovel, since I had so very little strength to clean or even walk across the room.

Paperwork still processing...July, August...
September. I was down 40 pounds from 190, to 150. I was weak and dizzy and depressed. I was also FINALLY approved for the Remicade.
First infusion was in September. Second one was 2 weeks later, third one is was the 6 week mark, and now it's every 8 weeks for a year.
By October I was having no blood, no infection/mucus/icky bodily functions 5 times a day, basically all FABULOUS news.

I started gaining a little bit of weight even--stabilizing at 157.
I was still exhausted though, and I asked my GP for a blood test. Seems we hadn't done one since March...turns out I was SEVERELY anemic--to the point that my doctor said that if I was 10 years older he would have insisted I get a transfusion.

So I was put on iron supplements, 3 times a day. My energy started picking up, to the point that we could actually go down to family for Thanksgiving in November, after my infusion.
We went to see ttk's grandmothers and family for Christmas (we actually flew out xmas day, to Texas, which was quite surreal) next infusion was January 20th, and the most recent one was March 12 or something.

In January of last year, we were given a gift of stock from ttk's parents, and we decided we could finally afford to buy most of a house (and get a loan for the rest!) the time we sold the stock, I was already heading down so far health-wise, and we were only able to go out and look twice before I gave up with the body battle.

Until you've been seriously ill, you can't really know what it's like, IMO. Just like I'll never know what pregnancy and labor is like. I really withdrew and closed off--I think I had TWO people come and visit me the entire time I was housebound. None of my family even came to visit me. It may be because I never really let on how sick I was. Maybe. I mostly blame the pathetic littleness of our current house, since there's not even any room for company to SIT since either end of our couch functions as TTK's desk, and my desk. Mostly.

So, that was my year. Our cats Needles and Tasha both died--the former from old age, gently, and the latter from a violent accident. Two of my favorite little chatty ridiculous chicken died--one crushed accidentally by me knocking over a piece of plywood, the other by ttk accidentally dropping a bale of hay on her. So many deaths. Sad thing is, I can't remember if it was last year that both Fizzbnn and Atlantis died. The year before it was Daisy, Azrael, and FatBoy. All ferrets...all who I promised would have a great room to play in when we moved to our new house--this place was supposed to be a temporary stop before we bought our own place. We moved in here March 2002 ! We figured we would be here for a YEAR and it's now been SIX crowded, crude, dirty little years.

My goals for this year?
Move to our new place without losing my mind, melting down, or hurting any of my friends and family who have offered to help.
Start a garden and start getting regular exercise.
Figure out (and maybe solve?) this damn insomnia bullshit--perhaps by going to a sleep study center.
Get all my critters into nice cages.
Throw a party or three!
Purge excess baggage.

There's probably a lot more that I could write, but for now I'll leave it here.

ps the spell check on blogger doesn't recognize the word "colonoscopy." Or "brumation."
Sigh. The dumbing down of America.

Perchance to...

"If there's any illness for which people offer many remedies, you may be sure that particular illness is incurable..." -Leonid Andreyevitch Gaev, in Anton Chekov's The Cherry Orchard, 1916.

"Try a little hot milk"... "A shot of whiskey does it for me every time"... "Stop worrying so much" ... "Counting down from 100 works.".. "have you heard of melatonin?" ... "Take GABA" ..."Marijuana helps me" "definitely DO NOT try counting" "Don't eat anything before bed" "Sleeping pills work great" "Sleeping pills don't do anything" You just need self-disclipline" "It has nothing to do with what you do, it's a problem with your brain" "Exercise at least a half an hour each day" "try Valerian" "just try to relax"

The problem is, insomnia is not only an illness that stands alone in its own right, but also is a symptom for dozens of other underlying issues, and is also caused by certain lifestyle choices,
so what works for Tom isn't necessarily going to work for Bobby or Susan.

Now that the Ulcerative Colitis is mostly under control, and the migraines are managed with pain medication, the next thing to try to fix is the insomnia. Wish me luck.

Monday, March 24, 2008


Sorry, I just realized that I missed mentioning a few things in the last few posts--we went into escrow on a house east of Sebastopol, on a gorgeous piece of property out on a winding country road, but the house inspection showed the house itself to be a mess, so we used our buyer contingency of inspections failing to live up to our standards, and left escrow. Two days later we went into escrow on a house that is the polar opposite of the first house--great house, incredibly built, well-laid out property, but smack up against a busy road.

Now we've released our contingencies, and the seller has 4 days to release their contingency (of finding a property) so we'll know by Friday if they wish to renegotiate, or just cancel. If all goes well, we should be closing escrow by mid-April, and starting our moving process by the end of April.

I'm alternating between hoping they'll cancel, and absolutely and totally wanting them not to cancel...this is all such an emotional, stressful process, that if this deal falls through I don't know if I can do this again. Of course, we would start all over and do this again (because the alternative would be staying here for longer), but I might lose some serious sanity points in the process.
My internal gyroscope has hit this place of almost calm--a wait and see kind of feeling.
There's a whole bunch of job stuff going on for my sweetie as well, so he's a mess about that AND whether we get the house...

He's cooler than I am...

So TTK got his pictures up online into his own webpage, all laid out and annotated, so I'm just going to send y'all there rather than try to get mine together. For now, anyway--I have a whole lot more pictures, but his commentary is more entertaining than I feel like writing right now, so here's where to go:

Oh--this is all about the house for which we're in escrow, in case you were wondering.
We went in today and removed our final Buyer's contingencies--now we just have to wait until Friday, for the Sellers to remove their contingencies, and we'll move into closing escrow. !!!!!!

I keep alternating between being overjoyed at the yummy house and property, and being all sick inside worrying about how busy the street is. It's not the quiet country road property we wanted, although it is on a country road, rural rather than residential. Problem is, it's a road that is straight, and connects two sections of the countryside, and people use it quite a lot. The speed limit is 45 MPH on this road--I don't know how, but somehow we compromised on one of the crucial issues we both said would be a deal-killer for us.
I'm worried the traffic's going to get worse, but my primary fear is that Sam or one of our other cats are going to end up splattered on that @%&@$!! road...
and yet here we are in escrow.
I don't know if these are normal buyer's regret quavers, or if we're doing the wrong thing, or what. I do know that we both have hit the point that if we do not get out of this cramped little rental, soon, we will either kill each other or ourselves, so we're doing this, even if we decide to move in 5 years.

Friday, March 21, 2008

migraine surges

Migraine stopped about 7 pm yesterday evening---but then sleep was nowhere to be found. And now, today, both dizziness and no sleep are my companions...
Yesterday was the home inspection, which I could NOT go to--so TTK went, and the inspection was over 4 hours and according to him, "very intense."
The house is in incredible condition--which is what happens when a master craftsman owns a place, I think. Our 10 day deadline for our inspections is Monday, and their 14 day deadline for opting out if they haven't found a place to move is we'll know in a week whether or not the place is ours for sure. SCARY!!!
The migraine keeps threatening to return, which really sucks because tomorrow is supposed to be a busy day. :-(

We'll see.

Wednesday, March 19, 2008


I'm on hour 27 of migraine.
Every once in a while I try to convince myself that I won't get one of these ass-kickers again, that they never get this bad, that my brain is fine and everything is hunky-dory and I have no brain damage or scar tissue or a big jagged hole in my skull and that if I just have will power I can do all the things I need to and and and..
and then one of these hits.

This is one of those that adjusts the scale, like the kid that's too fucking smart and everyone gets a lower grade on a test as a result.

If it weren't or the pain pills I would probably be puking my guts out right now from the pain. As it is, the pain is there but held back at a distance because of the's like being in a room that's all duct taped up and sealed against the evil terrorist gas, but you can see through the window and see it swirling and trying to reach its greasy little fingers through any crevice it finds...and the pain meds are the duct tape holding those questing tendrils back, but for how long before the glue weakens under the assault and the pain starts shredding me again.

I used to be a good writer. I used to hear a kind of music when I read poetry, or great prose, and could even achieve that edge, that distant symphony when I wrote. Not anymore. Now I fumble for words, I wiggle my fingers in front of me with my eyes closed, trying to connect the words to the image, the words that are just out of reach.

Hell, some days, especially after a migraine, I can't find basic words like "dresser," or "cup."

Today is the anniversary of the war on Iraq.
I know this because ttk got stuck in San Francisco after a business meeting today, trapped in his car through a maze endless detours and surging crowds.

He finally headed back to his work and napped on the couch...I talked to him about an hour ago and he's finally headed home.
This entry is going to be lots of little snippets just cause that's what happens when my pain medicine kicks in--we call it "Blue Pill Babble."
See, years ago when I was first given the prescription for the pain meds (my migraines are atypical, because of the scar tissue in my brain from the surgery. If you don't know that story by now, go to to see my ANCIENT hand-coded webpage that I haven't gotten around to redoing, for the whole sordid history.) the generic form of the pills were round, and blue, and bitter as all hell. They're still bitter--I always say you know I'm in pain if I'm taking these, because they're so bloody bitter that I wouldn't be able to overcome that unless I am in dire need. But I digress.
Anyway, they were round and bitter, and blue. It was just easier to ask for a Blue Pill from ttk than to remember the name of the drug (plain old Fioricet, if you wanna know) so we got used to calling them that. Then a few years ago they changed the generic to a white oblong (still bitter as a bad fuck) but we've kept the habit of calling them blues, which has confused our friends to no end.
Weird thing is when they kick in, they make me babble. Noone is here to babble at, so I'm typing this whilst laying down, with my eyes closed. I intend to spell check this, so I'm not too worried about the monstrosities appearing on the screen. Mostly.
TTK called--he's 6 minutes away, so I can babble at him soon. I can feel the pain trying to get in through my blue duct tape. I would say "heh" at my silly metaphor but that might hurt my head.

Monday, March 17, 2008


It's been more than 10 years, and I still love him so fucking much it hurts.
We have a deal that I die first--he's not allowed to leave me on this rotting planet alone.

...considering my piss-poor health, it's not going to be too hard for him to outlive me, unless he dies in a fiery crash because of this damn commute that we thought would only be for a year or so until he found a job closer to home, but that has turned out to be 4 YEARS...

...and yes, damn this fucked up cerebellum--I've been awake all night AGAIN.

I've been in a piss-poor mood all weekend, a mood which I decided that I would not inflict upon the few friends I do have, so all sorts of phone calls and emails are owed to the people I've left hanging. I even need to apologize to our real-estate ladies, because we met with them on short notice on Saturday, and I was in such an unpleasant state that I don't doubt for a second that I was difficult to be around. I even let slip my utter disgust for humans--I got to talking about reptiles and how many neglected and dying animals I have rescued from people who would rather let their kid's pet die, and just replace it, because it was just a "five dollar turtle."
but I digress. Of course.
Love was what prompted this post. Sad that hate should end it.
It's hard to feel loving and not irritated when he starts snoring enough to scatter his piles of mammals that suck up his warmth at night...right now even the old "elbow in the spine" trick is not working--if anything the snoring deepens.
Sigh. Love. Love. Love is a good thing [snooooore].

Sunday, March 16, 2008

We Walked Away.

Well, we decided that house needed more work than we were going to be able to afford, both timewise and moneywise, so we Walked Away. It actually felt really damn good to know we're strong enough to let go and be able to move on. 
So, we're in escrow on a different house. Heh.

The first of the inspections for THIS new house is tomorrow--the Well Inspection. It WILL go well.
This house is much nicer, but more expensive, and we're being much less over-the-top excited about being in escrow, now that we're all experienced n' shit. I've decided that buying a house is rather like getting pregnant, 50 years ago: you wait to tell everyone until you're sure you're not going to miscarry...

I am in the process of trying to get photos uploaded to my Kodak account, which is not public, so if you're interested in seeing them email me and I'll send you a link. WHEN I get the darn things up--I keep getting distracted and end up wandering all over the 'net doing research, reading blogs, and I get back on track and suddenly I am wandering through my computer files, looking at photos and oh, I need to do a little editing in Photoshop on this one, and I should upload it to my Flickr account, oh but I need to finish the crafty blog post I was making about this project, and oh oh oh oh
and suddenly instead of uploading photos, I am here writing in my blog about how I am NOT getting it done.
Ah, the joy of the easily distracted....

Tuesday, March 4, 2008

This is just miserable.

We had our house inspection yesterday, and the pest inspection. I swear, everything that could be wrong with this house, is. The roof is sagging, it has both dry wood and subterranean termites (I didn't even know there was sub-t!) the septic is for shit (literally!) and needs new leach lines and possibly a new tank, there's fungus growth around the edges of the roof from lack of gutters, the roof needs replacing, a "vapor barrier" needs to be installed in the crawlspace, etc. etc.
We thought about it overnight, then after my infusion this morning when ttk left, I sat down and started thinking this through, and I realized: I AM NOT UP TO THIS.
There is so much work that needs to be done before we could move in--at least 50-100 THOUSAND dollars--so why not spend more money and get an already fixed and nice house, that we can move into when escrow closes?
We told ourselves that if there were major problems we would just walk away--and I think that we need to acknowledge that now is the time. It feels like we have put so much work into this already, but realistically it's been a week. 5 days. We can find another house. I KNOW we can. We love the location so much, but the house is in miserable condition.
Are we going to have regrets if we walk away? Yes.
But I don't have the strength to manage a house rebuild, while ttk commutes and is gone most of the time.
For the love of God, Montresor!

We are going to talk more tonight--I juts talked to him on the phone and he is going to call our real estate ladies and put a hold on the next inspection.