I survived...

Well, I survived the camera-in-unpleasant-places experience...so on to house news!

The main room is FINISHED and I scooted couches around for a half hour, and arranged other furniture as well. Our dinner table is built, I put together a bench and a chair, I have an idea about a desk, and I finally found a bathroom wall color.

The pest inspector came by as well, and my tuffshed-cum-chicken hut is installed. I found paint colors for the outside of the house, (consequent to ttk's agreement), finally lit upon a BATHTUB, and possibly found a paint color for the master bedroom. 

Moving right along!

Speaking of moving, our goal this weekend is to move all the crap from the shed at the old place--after we sort it, clean it (LAYERS of dust!) and purge--to the new place. Pretty lofty, but it needs to be done.

TTK still has not called any haulers or helpers, though that was his assignment 2 weeks ago...

In other news, I am hot, crabby, and shopping waaay too much on Ebay.

Infusion.

Today was yet another infusion of Remicade. It's working well, except the last 3 days I've had some breakthrough symptoms, so we're moving me to a 7 week cycle rather than 8-9 as we have been doing. My weight is up to 165, unfortunately. It just keeps creeping. I figured that I've been so busy here that I wouldn't gain weight, but no, I seem to have found time to eat...my new resolution is NO MORE GUMMY BEARS!!!!

Tomorrow is going to be even more lovely than sitting in a chair for 3 hours with a needle in my vein: tomorrow is colonoscopy prep day. Whee..so instead of sitting, I'll be s*itting...

Thursday is the easy day--I'll be all sedated for the colonoscopy itself, so that's the easy part. I can't tell you how nice it is now that all the baby boomers are hitting old age and having to get colonoscopies done--that means the techniques have improved greatly--my first few colonoscopies were WITHOUT anaesthesia...INCREDIBLY unpleasant, to say the least. Nothing like laying on a table while some guy shoves a camera up your ass...and up and up and up and *gurgle* ...

and then getting to watch it on the monitor...and seeing the little biopsy-bite-of-flesh-ripper come out and CHOMP a chunk of your intestine...

Oh, and the well broke yesterday.

Finally found someone who could come out this afternoon, and he was great! A good 'ole country boy, who had the well fixed before ttk and I could even get there. and it didn't cost us a fortune! About $129 bucks, actually. The worst part of the experience was not being able to have the guys work on the house today or yesterday, so everything is scooched back by 2 more days. Sigh.

On a somewhat amusing note, I seem to befuddle the remedial spell-checker that blogger uses--it doesn't like any of the medical words that I use with regularity. And it hates TTK's name. Heh.

That American of Games...

Catch-up.

Basically, the month of August...

week one my dad went into the hospital and I flew down to L.A. to see him...
week two, three and four were house house house.

There was more, really, but for the most part all was drowned out by migraines and stress.

So, August was a month of family and property, health and pain. Whee.

On the family side: My sister is getting married, yay!!!! It's coming up in October, and I'm doing a bunch of crocheted items for it...
My dad has some serious problems...30% liver function, ascites, emphysema, cirrhosis of the liver, partial thrombosis of the portal vein, splenomegaly, and a partridge in a pear tree...

Nana Roo is coming down to L.A. for a visit, from Australia...

On the house side:

My reptile room is done--we had to move critters out over here so we could clean and have an informal walk-through (we got an extension on our rental for another month), so their cages are all set up and it looks great! ...except for the floor, which I forgot to have our contractor, Al, paint before I moved everything in. I'm not ABOUT to have him move everything out, though, so funky concrete is how it's gonna stay.

We got our couches delivered on the 23rd--they're gorgeous! Black leather yumminess!
The main rooms are almost all painted...TTK said he'd "get out of the way of the cobalt juggernaut" so I've been making 90% of the decisions on the house...which means the colors are DARK and INTENSE.
The main room is grey, with dark green trim, and one wall is a Merlot/Aged wine color...the opposite wall is a deep blue-black, and the kitchen is light and medium green. It all actually looks really good, although my description isn't doing it justice.
It's all very dark, though, but he room is huge and there's plenty of light to offset the dark.
The hallways are painted "french clay" and if it's too dark, I plan to do a Venetian/Tuscan plaster technique with a lighter golden-ish glaze...
By Monday the main rooms will be ready for us to move in--which means we will get to put together our dining room table and chairs, and arrange our couches, and BUY ME A DESK! We're getting closer and closer to getting to move in!

TTK's mom came up on Wednesday and brought me a BEAUTIFUL antique curio cabinet for my guest room. It's perfect! I found it on Craigslist, and sent her the info, and she went to Santa Cruz, bargained it down, bought it and brought it up. The woman is a DYNAMO. She wouldn't tell me how much the cabinet was, saying I "deserve a nice mother-in-law!"
I gave her the tour, and we had a good time--and I went to bed at 9:30 that night, EXHAUSTED.

I need to take pictures...oh...last week when I went over to the house, I spotted TERMITES. Yes, termites. In the studio that we had tented, less than 2 months ago. GRRRR.

This week coming up is going to be HELLISH...Tuesday is my infusion, Wednesday is "prep day" and Thursday is Colonoscopy. Wheeeeeee.
[THUD]
Wednesday is the worst of the 3 days--the colonoscopy itself I am sedated, and Tuesday I just sit there with a needle in my arm...but the prep is a whole day of phospo-soda, shitting, and clear liquids. And shitting. NOT fun.

So that's it for now...

Have you ever shaved a cat?

...raise your hand if you've ever shaved a cat...

Vet techs, please, put your hands down.

The "kitten" Ginsu shat on the kitchen floor this morning, and tromped it into a thin layer covering the entire floor. Plus her feet and bloomers were covered..

so after mopping, scrubbing, and cleaning, I shaved Ginsu down to a half inch, and then bathed her.

All with a migraine. Lots of drugs combat the migraine, though...hence the posting and the cleaning.

Surreal

I'm sitting here at ttk's work...I have a drs appointment with Dr. Mahadevan, my IBD specialist.
He's been introducing me to people here at his work, and they all say, "oh, you're cobalt." or "I love your chickens..." or "your pictures are great..." Hey! What are all these people doing knowing me? I commented to ttk that he's told them all about me, and he said "It's easier than talking about me."
Ooookay...

I'm not too thrilled about seeing this doctor...she's the one who said, two years ago, "oh, you're under control, no need to go on any of the stronger medications..." (there's no such thing as being cured with this disease--it's either quiescent or in a flare-up)...and then I proceeded to get worse and worse, and lost 40 pounds and went through a year of pain before getting onto the Remicaid back in September. My guess is that she sees SUCH severe cases of Ulcerative Colitis and Crohn's Disease that mine seemed minor in comparison. I think she kind of forgot the patient behind the disease. So now I get to go in, tell her I've been on Remicade, and ask her if I should be on it for a year, or for 2 years. We'll see what she says.

In other news, I had a salad Saturday, and for the first time in more than 2 years I didn't get hurt or the dreaded D word from it. Wooo! Though the drug has got the disease into remission in like, a month, my intestines still weren't healed and I couldn't immediately begin eating. I've gained back 15 of the 40 I lost, and I'm really not happy about that, but I expect that the weight gain will stop once we move and I have a larger space to deal with. I know the whole exercise machine thing tends to be a totally useless purchase for the most part, but it's tempting to get something like a stationary bike and put it in our studio.

On the house front, we meet with the contractor tomorrow to discuss the repairs we need to make before we can move in. The electrical is NOT safe, so that's my main concern, plus drywalling the garage and tenting the studio for termites. We were going to (okay, I was going to) renovate the kitchen, but upon the advice of my best friend, i am going to wait until after we've lived there a few months to really get a sense of what I want before changing what's there.

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)...my 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!)...by 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.

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 Friday...so 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.

Ow.

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 meds...it'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 http://www.ciar.org/cobalt 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.

Timeline.

I keep trying to remember various things, and I've realized that I mark most of my life as either BT or AT...Before Tumor and After Tumor. TTK and I keep forgetting when we married, so I've decided to write a timeline of events. Not all of them, mind you, just AT...


1995
January: Insurance kicks in: Diagnosed with Ulcerative Colitis.
April 10: Diagnosed with Acoustic Neuroma (now called Unilateral Schwanoma)
April 2?: Surgery
May 20: My birthday, and back into the hospital for Steroid Psychosis
July: Record heat wave in Chicago--500 people die, and I almost joined them.
October: Moved to Santa Cruz with Evil E.

1996
January-ish; Broke up with E. Moved out.
July-ish: Moved into McMillan House.

(somewhere in here I met TTK online, then in person, and got interested in him...)
August: Flew to Chicago for a visit.
September 5: Declared celibacy.
September 12: TTK offered via /m a back massage. I postponed until the next day.
September 13: We start our relationship. Monogamous.
October: TTK moves into McMillan House.
December-ish: After months of proposing to him, he finally said yes! Heh.

1997

We plan for wedding in November. November cruises by.

1998
May: I announce, frustrated with trying to plan a wedding, that we were getting married in June, damn it.
June 27: We marry. Me, him, Sara Homan as our Officiant, my sister as my maid of honor and his best friend as his man of honor. Party of five, in the middle of a field. :-)

1999
Moved to Seattle (Burien). I hate it.

2000
October: Moved to Cotati.

2002
March 1: moved to Sebastopol (Hessel area.)

2004
December: Doctor took me off celexa, put me on Wellbutrin which sent me loony.

2005
January: Partial Hospitalization Program for insane me.
February: Flareup started (and is still going.)
May: Finally decide to see the UC specialist. Made it down for my nephew's 2nd birthday.
August: Got to witness the birth of my neice. Wow is all I can say.

2006
Somewhere in here TTK decided to contact his parents, so I got to meet my MIL and FIL (and SIL) for the first time (after 7 years of marriage.)
May: Said new in-laws gift us with some stock (none of your business how much). Woo hoo! And eeeee!
I head to L.A. for neph's b-day party, and I take frogs to show (party is frog themed!).
August: I start school.
September: Ginsu appeared on our doorstep.
December: Dr. M declares me "in remission" but says I have residual irritable bowel. (HA!!)
December 25th: We fly to Texas to meet TTK's grandmas. Weird but fun trip.

2007
January:
Cramping and blood get worse despite being "in remission." I decide to get a second opinion. Which meant another colonoscopy, whee.
March:
Almost completely homebound now. Had to drop all of my classes. Weight loss is getting noticeable. I get a blood test check and my iron levels are 34 (normal is 35). No biggie, right? Keep reading...
April:
I go on steroid enemas. These are evil and painful.
May:
I go on oral steroids (Budosenide). Evil stuff. I start having extreme dizziness when I stand, that I attribute to the steroids (but, oh, was I wrong!)
June:
1st: momma has a stroke. (okay, TIA, but it's still serious).
Dizzy and sort of breath all of the time now. Hands are shaky.
July:
More of the same. Down to 155 pounds. (was 190 at the start of the year.) Somewhere in here I decided to take up crochet hook again.
August:
8th: Needles died.
16: Woke this morning by TTK...he found Atlantis dead in the cage. Was expecting it, since he was so depressed about Fizzbinn, but it was still a shock.
16: Down to 151 pounds. Finally approved for Remicade! Decided to taper myself off of the evil steroids, since none of my doctors wanted to, and they were making me insane.
22: First Remicade transfusion. Whee.

September:
5th: Second infusion. Feeling better every day.
13 11 year anniversary today.
28 Tasha died. :-(

October
Finally off the steroids.
3: Infusion of Remicade. Up to 155 pounds. Still incredibly dizzy and shaky, though.

I make an app with my regular dr, and ask for a blood test (last one was in March!)
Hemo score is at 23, when normal is 35. Dr is freaked, puts me on megadoses (3X daily) of iron so we won't have to transfuse me. THIS explains the dizziness, weakness, short of breath-ness, and shakiness! ARRRRGH!

November 28: My 3rd infusion of Remicade. I've gained 10 pounds (now at 160), and dizziness is gone. I think we can safely say I am in remission for real.

I need another blood test, but it's kinda fallen back in my schedule of TO DO's, since there's so much other stuff I need to get caught up on.



------------------
Okay, so the later years are not filled out much, but that's because it's always hard to separate the significant events when you're still close to them. I'm sure I'll be adding more.

Vascillating...

Okay, so now that I've announced that I am going to just use this blog for everything, I am once again wondering if that's a good idea--I mean, if you're cruising for crafts, are you really going to want to read all my intimate and nasty little life and health details? And if you know me and are wondering about the latest, are YOU really going to want to read about all of my little creative projects?
I don't want to scare the crafters, while disillusioning the geeks and weirdos (heh!)...and y'all know who you are.

So I think what I'll do is this: I'll do a full-on overhaul of my craft blog, get all the links satisfactory and all the bells and whistles, THEN I will re-open it "to the public." In the meantime, I'll just post creative stuff here, and scare whoever with whatever.

Sounds like a plan, man!

So here's a craft update: I'm taking pictures of my finished projects, organizing my patterns and stash, and planning new projects. It's kind of surreal--our place is so small that the only nice area to take pictures in is the bedroom, by making the bed and putting up a backdrop...so I have my camera set up on the tripod next to the bed. We're not filming porn, really!

A health update: I just went to the gastroenterologist guy...since the Remicaide is suppressing my UC so well, he thinks it would be a not-so-good (as opposed to COMPLETELY bad) idea to start the immunosuppressant therapy as well, so no Imuran for me. I'm actually quite relieved about that, because there's a serious side effect of the two drugs when taken co-comittantly--there's an extreme chance of developing lymphoma. Uh, no thank you!

So, gut is almost completely under control--I still can't eat normally (no salad, no beef, no raw vegetables, easy on the fiber and fried foods, etc) for at least 6 months (according to my dr) but I have gotten to expand my variety, and I can actually eat without the panic or fear. Or PAIN.

Family update: My dad went into the hospital with acute pancreatitis, my sister is having a severe endocrine problem that none of the doctors can figure out or fix, my MIL broke her foot, my FIL had hernia surgery...basically, I get better and everyone around me falls apart. TTK is not physically ill, thank goodness, but he's having some issues mentally because of all of the strain of caring for me and the household and keeping down a full-time plus plus job.
We're leaving to go to L.A. in 2 days, and trying desperately to batten down the hatches and basically make the place seaworthy (to carry the metaphor waaay past its usefulness!) so the petsitter will survive intact...

Well, that's enough for now--I have to go clean something. Heh.

STILL anemic!

I had another blood test, on Thursday...the doctor called today and said that I'm still anemic, even worse than before (normal is 35, last test I was 23...he didn't say the exact number this time tho) and he wants me taking iron _3_ times a day...

Since I started the Remicade I have been feeling better and better--my next infusion isn't until November 28, so we'll hopefully get this anemia thing kicked before then.

You know, when you're sick all your energy and focus is on being sick and trying to get better and even just trying to be mildly functional...but you start getting better, then you start noticing that there's OTHER things out there besides blood and pain.

Anemic...

You know all those symptoms I was attributing to the steroids--the dizziness, the lightheadedness, the rapid heartbeat? Well, I got a blood test yesterday, and my doctor called this morning: "You're quite anemic. If you were younger I'd insist on you getting a transfusion."

He went on to describe what effects I might have been having--dizziness, lightheadedness, and a rapid heartbeat when I tried to do much of anything. Surprise!

So he has me taking iron twice a day, and I get another blood test next week.

Approval Finally...

The Remicaide Nurse called today, and my insurance company has approved 3 treatments of Remicaide (and at $2,400 a visit, that's saying a lot!)...my first appointment is next Wednesday! Yay!

I'm down to 151 pounds, which would be great if I had lost it through diet and exercise, not diarrhea and blood and tissue and constant nausea and pain. Now we just need to get me off the steroids before I go into psychosis...and so we can get rid of all these evil symptoms that go along with the steroids--MAJOR dizziness, mood swings and some serious depression, severe body/hand weakness (such that I run out of breath and have to pant for air if I try to talk on the phone and walk around at the same time).

Here's a description of the disease I just found that is incredibly accurate:

About Crohn's Disease and Ulcerative Colitis

Crohn's disease and ulcerative colitis are painful, medically incurable illnesses that attack the digestive system. Crohn's disease may attack anywhere from the mouth to the anus, while ulcerative colitis inflames the large intestine (colon) only. Symptoms may include persistent diarrhea, abdominal pain or cramps, rectal bleeding, fever, and weight loss. Many patients require hospitalization and surgery. These illnesses can cause severe complications, including colon cancer in patients with long-term disease. Some 1.4 million American adults and children suffer from Crohn's disease or ulcerative colitis, with as many as 150,000 under the age of 18. Most people develop the diseases between the ages of 15 and 35.

Everyone who has been calling me has been asking about my health, which is understandable, but I'm so tired of talking about it!
(Which is probably why I haven't been posting about it...plus the profound depression kinda gets in the way of EVERYTHING.)

TTK and I discussed it at length, and decided last week since the Remicaide was pretty much guaranteed to happen, we would start an INCREDIBLY slow taper off of the steroids since they are destroying me...

which is probably why I have energy today and yesterday, and am posting, and feel better than I have in months.

I've also started crocheting as I felt way too limited by the Knifty Knitter and always working in the round. Plus the dizziness has kept me homebound (I am NOT driving a car like this!) so I've had a lot of time on my hands and not much strength to do chores...

Right now I am making monsters, for my neice (who just turned two). I am basing them on the amigurumi concept, and I'll talk more about this whole craft thing in another post. :-)

Ow.

Ick.
Just got one of my molars ground down and prepared for a crown.
Have I mentioned I hate tooth issues?
The procedure was horrible--I can't breathe through my nose when my mouth is open, so I had to hold my breath, wave a hand and gasp for air, then hold my breath again, for an hour and a half.
Not fun.

More on the Shakiness

One thing about this shakiness: it feels like my whole nervous system, not just my hands...it manifests itself in my hands, but it's kind of like if you whack a stick in the middle, the vibrations go all the way down, and increase as they reach the ends...

This, combined with the dizziness, is really making me want to cut. I'm reining the urge in as hard as I can, though, because I know EVERYONE around me will freak, and probably take me off the steroids immediately. But...

nnnnn... cutting... control...


nope, nope, nothing to see here, I didn't say this, didn't happen, nope nope nope...

Dizzy

Okay, this dizziness is really driving me crazy. I know I *just* complained about it a few days ago, but considering how bad it's gotten, it bears repeating.

DIZZY                                 DIZZY
                  DIZZY
                             ~.,~-"`~
                                                                            DIZZY

DIZZY



DI            Z  Z     Y             D   I   Z   z        Y                    d       i  Z        ZZ       Y

Side Effects

Well, I've been on the budosenide for 3 weeks now, and things are not really getting better...the side effects of the steroids are *almost* overwhelming (if they were overwhelming, then I'd get off of them pronto...):

The shaky hands thing is what's really getting to me--that, and the dizziness/short of breath/if you stand up or move too fast you are going to pass out...

Shaky hands make for difficult typing. I find I have to curl my fingers under and use my knuckles for control when I am trying to use my trackball...

Dizziness makes for scary moments of the Oh-shit-I-am-going-to-pass-out variety. I find I either have to sit down abruptly (which really sucks when you're in the chicken coop!) or lean on something until the wave passes and I can move (SLOWLY!) again.

Short of breath is scary because I don't really seem to be doing all that much when I start having to gasp for air. Just talking on the phone or carrying in a load of laundry is enough to do it--I can't lift ANYTHING and this has added more reasons to why I don't drive anywhere.

Actually, the shakiness isn't just in my hands--it seems to be stemming practically from my spine and going down all my limbs. Can you say "NOT FUN!!!"?

The worst part of all this? My UC does not seem to be getting better. I'm still experiencing the urgency, the frequency, and the PAIN. I've had friends say, "Why don't you just wear Depends or something when you go out, instead of staying at home?"
Well, we're not talking about a tiny amount, here, and we're not talking about solids. I am not about to go somewhere and risk having an accident, Depends or not! Just HOW would I clean myself up in a public restroom? I can't exactly stand at the sink in my altogether, washing myself down... I would much rather stay home, near my own private facilities, thank you. Even visiting friends is scary, because what if I have to use their bathroom? It's not like a wave hits and is over--sometimes it's 10 minutes of pain and blood and spasms...then yeah, I want to go out and talk more with someone after that, right.
Frankly all I want to do after an episode is curl up into a little ball and cry...and at home, I feel free to do that.
This weekend should be interesting, since we are going to try to go to a Crohn's-Colitis Patient/Family Symposium in Sacramento on Saturday: 2 hour drive, 6 hour event, 2 hour drive back. I dunno about this...but if anyone is going to be understanding, it'll be this group of people.
Sigh.

Momma's home.

I just talked to her about 2 hours ago--she's back in her nest, with a new medication, and a horde of small dogs that are so happy she's back in her nest. :-)
Apparently it wasn't a stroke--it was a TIA, or transient ischemic attack. A TIA "is a short-lived temporary impairment of the brain caused by loss of blood supply" which sounds really damn scary, but it doesn't do as much damage as a full-on stroke. http://www.medicinenet.com/stroke/index.htm

So she's quitting smoking...YAY!

whew.

I just talked to my Mom...

And she sounds good. A little teeny bit slurry, but she said that she was actually able to eat with her right hand...she wants to go home tomorrow (of course!) but the drs will probably keep her for a few days.
It was amazingly hard to get her to talk about what happened--she kept asking me about ME and how I am doing!
I asked another question about how she was every time she tried to get the conversation onto me, and FINALLY she told me about what happened.
What she described was a lot worse than Amber had made it seem--Momma said she was curling her hair when she got dizzy...when she tried to walk into the bedroom, she couldn't get her body to walk straight but instead kept peeling off to the left.
When she reached the bed, she couldn't climb in, but kind of fell in instead. Amber just happened to call at that time, thank goodness, and when momma reached for the phnoe, she couldn't push the on button with her right hand. She said she could see the button, and see her hand, but she couldn't get her hand over to the button.
Scary.
When I mentioned that TTK wanted us to fly down immediately, she told me "Absolutely not. There's no need."
I agreed, saying that I would rather come down and see her when she was NOT in the hospital.

She got to have an MRI, which I told her is like "Having a band play african drum rhythms on the outside of a trash can--while your head is IN the trash can."
That got a laugh. :-)
I am going to call amber tomorrow and get an update.