Confessions of an Internet Junkie

Left this morning in the dark to make my doctor's appointment in London. It was bitterly, bitterly cold, but I have to say that it was one stunning sunrise, too. I was wishing I had brought my camera, but in truth I wouldn't have had time to stop and take the pics anyway. Besides, the camera would have frozen.

Two hours later I pulled up at the hospital for what I thought was going to be a half hour stay at most. I'll just never learn, will I? The upshot is that the neurologist I talked with (Dr. Diosy) found nothing out of the ordinary at all with the MRIs I'd brought with me. It was a confusing conversation, because he had never examined me, just relied on the case work done by his resident the previous day. Consequently he was concentrating on the fact that I have a memory loss and confusion and the "foggy brain" syndrome, while I was there primarily because I keep losing my balance. Anyway, he declined to follow my case (no problem there) and referred me back to Dr. Mendonca, the neurologist in Kitchener. I really like Mendonca, so I didn't have a problem with that, but I came out of there feeling as if nothing had been accomplished other than my spending a lot of time commuting for the past two days.

He talked with Mendonca while I waited outside of his office, and Mendonca will be ordering an MRI of my neck and most probably a lumbar puncture, too. Eh, I suppose it was inevitable, and it will give us some valuable information. Time to just suck it up. The wait for the MRI could be up to two months, and in the meantime I get to see just how far this nonsense progresses. At this rate I expect that at the end of two months the guys around here will be hauling me around the place strapped to dolly like Hannibal Lector. Hopefully minus the face mask and the bright orange jumpsuit.

I was feeling down when I got home, but Dar put it in perspective for me. There's no brain inflammation, no tumor, nothing structurally wrong with my brain - and that means that it really could be the lupus causing all of these symptoms. Dr. Pope (rheumatologist) had said that it could be lupus cerebritis, which is a rare form of lupus, but she wanted to work the neuro angle first. That's the frustrating thing about autoimmune diseases; they're diagnosed by exclusion because there is rarely a definitive positive test for any of these conditions. And that takes time.

Then about two hours later Dar, with her mad diagnostic and search skills, finds what really could be the cause of my balance and neuropathy woes: Chronic Inflammatory Demyelinating Polyradiculoneuropathy. (Say that three times fast, I dare you *g*) It's another rare condition, but the symptoms are spot on, and it has been known to show up with lupus and similar autoimmune diseases. She's going to run it by Mendonca, just to give him a head's up.

OK, I've been up for 20 hours now. This prednisone insomnia is killer, I'm telling you true. I should really just try to shut down. Wish me luck.

Oh, I know we keep saying this, but really - Satine looks to be in labor. Dar found her kushed with her hind legs out to the side instead of under her (Sign #1) and her vagina is elongated (Sign #2). If not tomorrow, then Sunday, but I'm betting on tomorrow. Which means I really need to get some sleep! To the Imovane! Awayyyyyy!

Last one, I promise, cuz I'm off to bed.

Presenting the latest chapter in the Antiphospholipid Follies. Remember that blood test that I keep going on about that I had done on Nov. 8? The one that will indicate if I'm in a high risk group for stroke and heart attack and which the lab keeps swearing is still pending?

Yeah, well, I got a message to give the lab a call. Guess what? They never even ran the fucking test. Over two months later and they finally get around to telling me that I need to come in and have the blood redrawn. But guess what else? Because I already paid them my $50 to take my blood and then a) contaminate it or b) lose it or c) throw it away or d) sell it to someone for use in some ridiculously stupid ritual, I don't have to pay them again when they repeat their incompetence. Are they great or what?!?!?

And guess what again again?

1. They can go fuck themselves.

2. I had it done yesterday at the hospital - for free - and the results will be back within the week.

3. They can go fuck themselves again. But they won't have to pay for it this time. Because I'm nice like that.

I feel so much better. How about you?

It saddens me to have to report that the Cookie Swallow test contained no cookie. Not even one crumb. I was surprisingly disappointed by that fact. What I did have, in order, was two teaspoons of barium followed by a full gulp, a teaspoon of applesauce with barium, 4 small pieces of fruit drowning in barium, and two bites of an egg salad sandwich with a big gob of barium masquerading as mayonnaise. (That last was pretty funny. The intern wanted to make it look nicer to distract from the actual bariumness of it. She was cute.)

So the good news is that there's absolutely nothing wrong with my swallowing. The bad news - because you knew it had to be there, right? - is that the problem is farther down the esophagus and probably has to do with muscle weakness. It will require another test, and that muscle weakness comment has me thinking MS again. But I'll just have to wait and see.

Honestly, I was really looking forward to a cookie :) In my mind it was an Oreo cookie with a little dollop of barium on top, kind of like a dollop of whipped cream. Now I'm going to have to have a cookie, you realize that, don't you? Because I'm that big of a nut case. (Ooooh. Chocolate chip cookie with nuts!)

I made my appointment for the MRI. It'll be this Friday at 5:20 PM. I could have had an open MRI, but they said that the closed gives more precise results, so I went with the closed. I'm not so much claustrophobic as I am distressed about being restrained, and that's the real detriment to that type of MRI. However, they offered me Valium, and who am I to turn down my very favorite drug of choice? Yes! So I have to show up at the MRI place an hour early to get all drugged and happy.

We'll be spending the night in Williamsville, NY which I take it is right outside of Buffalo since the clinic is called the Buffalo MRI & CT Clinic. The clinic has a special rate at the hotel across the street, but when I called for a reservation they said they were full up. (No doubt it's because of the falling dollar; Canadians are hot to buy the stuff that is still being ridiculously overcharged here - especially books, magazines, DVDs, CDs. I know that I plan to do some shopping.) Anyway I was a bit concerned because I won't be driving after the MRI, and the only other hotel is a couple miles away. Happily it turns out that the other hotel actually has a shuttle that goes to the clinic. And the hotel has free in-room internet, too. Yay! It'll be even better 'n Vegas because I'm just guessing that there won't be hourly pirate battles going on under the window. I could be wrong. We'll have to wait and see.

And the final news blurb is that Jane went to her new home tonight. The last of our barn kitties. ::sniff:: Mirabelle (the mom cat) has a sort of routine now of coming inside when it starts to get dark, sleeping on the pillows on the guest couch, getting her morning breakfast served to her, and then wandering back outside during the daylight hours. As long as it isn't really awful weather. Because she may be a lifelong outside cat, but she is no fool. I think I'll give the shelter another call. They might have room for her since she's without kittens now. Sweet old girl. And she does gorgeous kittens.


Good night, sweet Jane.

Great little vacation capped by a bizarre flight home and the next 20 hours or so spent in the Twilight Zone.

The hotel let us extend our check-out time; we paid for it, not like they did it out of the kindness of their corporate hearts, but it was a help. sparky77, puffgirl_two and sffan hung out with us for a few hours until their plane left in the afternoon, so it was like a little dorm party for a while. I love them all, so it was great to spend the time with them.

I have no idea how this is reading. We are travel-dazed like nobody's buisiness. The flight left Tuesday night at 11:35PM Vegas time and pulled in to Toronto this morning at 6:30 local time. We didn't get a lot of sleep since, oh, Monday night. Very weird day. The flight was booked full, and the plane was little. There were loads of babies. I got hit on the head a couple of times (aisle seat), once by a steward who really clocked me. He apologzied, and I wasn't mad because the plane had no spare room at all, but still . . . ow. I also got conked by passing luggage and narrowly missed having a fallen suitcase hit me when it tipped out of the overhead compartment. Nice save by one of the other passengers. Turbulence was fun, too.

Finally pulled into Toronto, and we were the last ones off the plane because I simply could not deal with the jostling for position that takes place with deboarding. Finally off the plane and through customs, then had to wait for at least an hour for transport home. Well, Dar went home; the driver dropped me off at the hospital for my EEG which went quickly and painlessly. Then I had to hang around fo4r 45 minutes until Mark could give me a ride home. Very cold, very tired, very achey and tippy.

Dar was down for the count by the time I got home. Flying does terrible things to her shunt, so her body just shut down until everything stabilized. Which I believe it was starting to as of a little while ago. Made my apologies to the inside cats, went out and fed and played with the outside cats. Took care of the alpacas, who were happy to see me. That always is a relief to me; I'm out there so infreuently now that I worry they'll start treating me like a stranger.

The big news for me was a phone call from a nurse at the rheumatology and osteology department at St. Mary's Hospital in Kitchener. She'd called a couple times during the time I was in Vegas, and after Mark had passed along the message I actually did try to call her from our hotel room, but I got her voicemail. Anyway we connected today, and I think this could be a positive step. she took a history over the phone, and she asked a lot of good questions and even more importantly she gave me some informed and supportive responses. Apparently Dr. Hanna was inspired enough after my last visit to put me on the rolls in that department. I'll have a cookie swallow coming up soon. (It's a test for my difficulty in swallowing, in case that wasn't obvious.) She said that it normally takes months to get one scheduled, but occasionally a doctor will have a patient who needs more serious follow-up, and that's me. Well, whaddy know, Dr. Hanna :) He came through. So I pretty much have to hang by the phone to follow up when the appointment comes through: it could be with one week's notice, it could be with one day's notice.

I have an appointment with a neurologist in just a few hours: 9AM. I should get back to sleep. I've been mostly asleep since about 8PM; I woke up because my gall bladder is getting irksome, so I'm hoping I can tame it enough to get back to sleep again. This is so weird. I haven't done any long distance traveling in many years, and I'd forgotten how easily one loses a sense of being centered in time and place. Everything is kind of floaty still, but I'm hoping that tomorrow will put us all back on track. How cliched is this paragraphy anyway?

Oh, I lost the cord that connects my camera to my laptop for downloading pictures. I'll have to pick up a replacement while I'm out tomorrow. Damn. I think it happened on the plane while I was trying to get my headphones out of a zippered compartment in my luggage. I know I didn't leave them in the hotel room; I'm scrupulous about going over everything. Sigh. It was all so rushed and crowded on board the plane, and I was exhausted, I guess I never noticed it fall out. Damn.

Time to sleep again.

Oh, I had my Swiss Army knife confiscated in Vegas at the airport. When I was getting ready to go through security in Toronto last Saturday it suddenly occurred to me that I might have my little knife on me, so I quickly searched around my purse. Nothing. Went through security without a hassle, so I figured that I must have taken it out at some point back home and just forgotten about it. But going through in Vegas, I get pulled over and told that they're going to go through my purse to track down my "corkscrew." Tuh-duh. So I explained to the young lady what I thought had happened, and she laughed because she couldn't find it, either, even though it showed up on the scan. Finally after just about turning the purse inside out she found it; she said I could mail it to myself, but honestly by that point I was so tired and achey that I just told her to add it to the stash of contraband she had going there at her station. Bye, silly little knife. I had you for close to 30 years, and I lose you as a victim to the War on Terror. Not a bad way to go, little knife. Not a gad way at all.

Gall bladder is not going away. I'm off to see what I can do about killing it. Wish me luck, please