Can You Hear Me Now?

Damn Canada Post! I want my stuff from eBay. Who knows when I’ll see it? And I can’t even mail anything because the mailboxes are locked up and “out of service”. I hate strikes/work lockouts. Work it out, people!

It’s Father’s Day so I won’t get this posted before everyone gets here, but I’ll get started anyway. It’s the whole family at Donna’s again where we’ll order in food and everyone can watch me get up and down to pee a million times in the commode beside my chair. I have NO MODESTY anymore. I’ve been saying that for awhile, but it’s never been more true this past year or so. Everyone has witnessed me pee. I wish I could be discreet about it, but I can’t. It’s just the way it is. And last Sunday night I fell in my bedroom around 12:30 am and since I sleep in the nude, (I always have and now I pretty much need to anyway) my rescuers (Thalia, who always sees me naked, and her husband…) saw me in my full glory. It was not easy getting me up, and although Thalia tried to keep a sheet wrapped around me for modesty’s sake, it was just in the way.

I am so thankful Thalia lives right upstairs and I wish she and her family would stay forever. I think I’ve got a year - they signed a lease - but then they’re outta here and most likely moving to Toronto. Wahhhh!!!

I am wearing a dress today that I ordered off eBay. It’s the first time I’ve worn it and it’s so low cut it shows the lace of my bra a little too well. Appropriate for Father’s Day, no? I have 3 dresses on the way… since I can’t wear pants around the house anymore I’m stocking up on comfy toss-on dresses for the summer. A little more classy than just a shirt! But this dress is a meant for a night out, methinks. Oh well. Damn postal strike.

I hired a new caregiver last week, named Chrissy. She’s fabulous! She works most mornings at a long term care facility and then 3 days a week she comes here for the afternoon (and 2 bedtimes/week). It’s going great so far. I had to replace Nancy because I need to be given an in/out catheter a couple times/day and she wasn’t comfortable with that assignment. So while I was at it I juggled the hours to give Thalia a few more (Nancy used to come 4 days/week).

Oh, the first of family arrived, I’ll be back later!

Obviously, I didn’t make it “back later”. Family was here the rest of the day and I’ve rarely been alone since, as my life revolves around caregivers. And my bladder, as I have mentioned previously (in passing).

I’m still waiting for that doctor in California to get back to me. He has copies of all before and after images/reports of my veins and on Monday he emailed me that he has everything he needs and would “try to call tomorrow”. Still waiting. Not that it will make any difference. He can’t fix my CCSVI from there and they won’t do it for free, and I’m still in debt from my last treatment, and whose to say I wouldn’t be worse again after another attempt?? Sigh.

Have you seen this yet??

Awesome. All support is appreciated.

What really bothers me, aside from the fact that I know I have CCSVI and can’t seem to get it treated properly, is that when you read about the symptoms of a stroke, or hypoxia (lack of oxygen to the brain), I have ALL those things every day, yet I can’t get help for it. Dr. Code says we are suffering from a slow stroke, and it makes perfect sense. It’s all related to blood flow and treated by correcting the blood flow. BUT IF YOU HAVE MULTIPLE SCLEROSIS THEY WON’T TOUCH YOU. This country, and the ones with “universal health care” that are run by pharmaceutical companies who make billions as long as MS stays an autoimmune disease (never proven), and with big ego’d neurologists who refuse to look at other theories because they also have strong financial ties to big pharma, are fucked. We are just fucked. It pisses me off like you would not believe.

I’ve had another week with Chrissy, and I tell ya, she’s just great. Next week we’ll be going out more and I’m planning on taking a road trip out to see my buddies in Carstairs at the Cafe Radio. I’ve only been in her car twice for outings, but it went well. And this week we went for a long walk (wheel) that I hope to do more often in the summer. It involved Starbucks.

Ohhhh we cleaned out my office this week, I got rid of a lot of old paperwork I’m tired of hanging onto. It’s old stuff from 2006 and 2007 from clients I haven’t heard from in years, and I figured, I am not going to be responsible for it anymore. Tax laws say you need to hang on to receipts for 7 years… but I don’t even know how to find these people anymore and they never requested this stuff back, so, I filed it under “G”. Scratch another thing off my 101 list.

I’m going to see the Titanic exhibition at our Science Centre on Sunday! It was Shawna’s idea, and I think it’s a good one. They have original pieces from the Titanic and stories and stuff. I think it’s going to be interesting. I didn’t realize they’ve been here since February and the exhibit ends on Tuesday! Glad I get to go.

Hehe I’m listening to a live feed from Cafe Radio in the background and my friend Kim just said “hi” to me. I almost feel like I’m there.

Well, I’m going to post this before another week goes by. Gotta pee!

Today I’m going to talk about my trip to southern California (no, I don’t have a different keyboard, but I’m too anal to keep typing with no caps so I’m going to do it sometimes. SOMETIMES). It was a fun trip and deserves some talkin’. And photos, but I haven’t even sorted/edited them all yet…

We (Shawna and I) arrived in Los Angeles at 1:00 in LAX on Sunday, February 27, the same day as the Academy Awards. Because of this, I am 99.9% sure they re-routed the “normal” people to buses to be brought in to a different gate. Or something. It was not a normal plane departure and this is a daily flight, so on other days you know it’s different. In fact, we saw that same flight arrive when we were leaving, so it was obvious to us. Re-route the little people.

Anyway, we arrived, caught an Enterprise bus to take us to the car rental place, and I sat outside in the nice sunny weather while Shawna went to get the van. It took a loooong time. At one point a guy came along and said “here, let me wheel you inside, it’s COLD out here!” I had to laugh. I guess the week we were there was “cold” to Californians but to us, it was nice spring weather (usually around 18-21° C and sunny). But I let him take me inside so I could watch some red carpet action.

Finally Shawna and the van were ready, so we headed for the freeway and Costa Mesa, less than an hour away. We stopped for supper and then checked into our room at the Ayres hotel. It was great except for the TV. It was in a cupboard facing Shawna’s sofabed, and could not be turned so I could see it. Plus the cupboard doors didn’t even stay open. So I got to HEAR the Oscars that night. It was pretty neat to know all that was happening so close to us.

The next morning we had a quick breakfast in the restaurant (awesome free breakfast buffet every morning) before my consultation with Dr. Arata at Pacific Interventionalists. I met Mark, a Facebook friend from Edmonton who was being treated the next day as well. Dr. Arata was very nice and professional, knows his stuff, etc. What did we do after that?? I don’t even remember. Oh wait, we went to the MALL. Of course! South Coast Plaza. The largest mall in California. Pretty incredible place, with all the big names you can imagine. Then I dragged Shawna to a Whole Foods to make her cry over all the gluten free stuff you can get in the States that you can’t get here.

By the way, our dollar was really good while we were there, and eating out and everything was cheaper than I expected! Also, since everyone is on some kind of special diet in CA, getting gluten free food in restaurants was a breeze and wheelchair accessibility was never really an issue. I want to live there.

The next morning was my procedure. We got to the clinic and I won’t go into details (it took several nurses and many painful pokes before they finally sent someone who would LISTEN TO ME about where the good IV vein is, the procedure itself was bloody painful and at one point I screamed and started shaking/crying until they drugged me enough to put me out) and while I was in the OR, Shawna took herself to the beach and spent a few hours cruising around there. I’m not sure how long I was at the clinic, but after 2 hours in recovery they sent me home (I was awake and coherent, able to pee, so good to go). I spent the rest of the day/evening resting in bed and I do believe we had In ‘n Out Burger for supper that night

The next morning, Wednesday, was my follow up with Dr. Arata. I didn’t feel any different. (Mark, on the other hand, was an entirely new person, able to walk without his cane, no headaches, and except for some numbness in his toes, had no signs of MS anymore. Sigh). Because I had a stent put in my azygos vein I was prescribed blood thinners for two months, told to take Ibuprofen for the tenderness in my neck, and “give it time”. So… the medical part of the trip was over, now for some fun!

The day after treatment you’re supposed to lay low and not be too active (not hard for me these days, anyway) and stay “in the area” so we weren’t checking out of the Ayres until the following morning. But that didn’t mean we couldn’t spend the day in HOLLYWOOD! So, we did. We did the whole touristy Hollywood Blvd. thing, walk of fame, Mann’s Chinese Theatre, saw the Kodak Theatre where the Oscars had just been a few days before, etc. etc. Then we got suckered into a tour of the star’s homes, but because the tour buses aren’t accessible we got talked into a private limo tour. What the hell, how many times in life does one get to do this? So we went out for a couple hours in a limo with a private tour guide and saw everyone’s houses (from Johnny Depp, Ellen and Portia, Jen and Brad’s house before they split, to the Playboy mansion’s grounds and Aaron Spelling, Christina Aguilera and many more) and realized how close together everyone actually lives; Sunset Strip, Rodeo Drive, all that Hollywood stuff. It was fun and interesting, our guide knew her stuff, and a lot of history.

The next morning we checked out of the hotel and headed for Beverly Hills, 90210, where I booked us a few nights at the 5 star luxury hotel L’Ermitage (a favourite of celebrities like Leo DiCaprio, Shawna’s fave) which was, in hindsight, a mistake. The location was great, but the room was not set up for me AT ALL, and staying there was a struggle. Plus it is SO private (which is why celebs like it!) you wouldn’t be able to catch sight of a celeb if you wanted to (and we wanted to ) Only worth the money (and I got a great deal, but still, we could have stayed at a hotel in West Hollywood and been happier for less) if you’re able bodied, and spending a lot of time in the hotel.

Anyway, we got to the hotel, checked in, got a special key to the parkade because I’m in a wheelchair and couldn’t use their valet service at the curbed front entrance (saved on tips there, thank goodness), had a wonderful glass of complimentary lemonade (it was ridiculously delicious) then headed out to Burbank and Warner Bros. Studios for our tour.

We arrived at the parking lot for the tour, and I spotted a wheelchair sign and a ramp, so we parked close to that and headed towards it. There were a ton of people on this big outdoor patio and a band playing. We didn’t know where to go, so I asked some people where the studio tour was, and it was pointed out to us that we were at a private Warner Music party and the studio and tour was in a completely different place. Oops.

So we headed towards the big Bugs Bunny statue and the proper building to check in for the tour. After watching a short movie about the history of Warner Bros., everyone was loaded into the little tour bus (and me onto the back wheelchair thingy) and off we went. That was super fun and interesting! But because of the time, which I planned so carefully to be when Ellen was taping so we could maybe get a glimpse of her, or be a part of her pranks as she often does them on the lot, we were unable to go by her studio because she was taping. Harumph. We did see her office building and parking stall, but of course it was during a time our cameras were locked away. Due to copywrite concerns our cameras were taken at certain points. Like… we were able to SEE Clint Eastwood as he was directing his J. Edgar Hoover movie (missed Leo DiCaprio by 5 minutes) but no photos allowed. Or the museum where you can see the actual clothes worn by the stars of certain movies (Tom Cruise is super short; I mean, shorter and smaller than you can imagine. And Ellen Page must be the skinniest woman on planet earth). Or the set of “Chuck”. I did manage to get a few photos that day that have been uploaded to Facebook. The public album link, for now, is RIGHT HERE.

After the tour and gift shop purchases (Ellen T-shirt, Two and a Half Men coffee mug and Central Perk coffee-to-go container) we went to the Hard Rock Cafe in Universal Studios for supper. That is a pretty cool place!

By the next day, I was starting to fade. All the activity and not being able to sleep was catching up with me. I think all we did was visit Sprinkles Cupcakes in Beverly Hills for the MOST AMAZING CUPCAKES EVER, drive around a bit, and decide on which apparently celebrity hotspot restaurant we should go to for a fancy dinner. One big night out in Beverly Hills; you only live once! We ended up at Morten’s Steakhouse where there were a million Sherri Shepherd lookalikes and a private dining area in the back where the celebs probably go. Next time I will do more research and read more gossip rags before deciding where to eat! But I think there are celebs around you all the time in that town but you just can’t recognize them in street clothes, hanging out with the rest of you.

Thinking back, dining at the restaurant in our hotel probably would have been best. Leo DiCaprio goes there all the time and Daniel Day Lewis was in there when we were checking out. So… yeah.

The next day, our last day in Los Angeles, we headed for The Grove. What a fantastic place!! Of course it was a Saturday so it was super crowded. But what a great place to spend the day. They even have a giant farmer’s market there, where they celebrated mardi gras. It was a mass of people and crowds so that part was gross, but it’s a really nice place. I totally want to go back on a weekday.

So I think that’s really it… somewhere in there we visited a Target and Trader Joe’s. We went back to the hotel exhausted and worn down. Shawna packed; I rested. The next morning we checked out early, got some gossip from the girls at the front desk (”come on, we’re leaving now, we can’t go stalking anyone anyway…”), filled the van with gas before returning it, hung out at LAX until our flight left.

Once I got home I had high hopes that once I got back into my regular routine of more water and healthier food, proper rest etc., that I would start to feel better, but that never happened. I’m now over a month on my new eating plan, but I feel no different yet (and I don’t think I’ve lost weight, either! Hmph) but I’ll stick to it for awhile, I know it could take several months for my body to rebuild from proper nutrition. I’m waiting for a doctor down there to review my recent ultrasound results against my pre-procedure images and see what he has to say.

Pepper, my sweetie.

Pita crawled under the blanket I keep on the sofa to protect it from cat hair. Because she’s a smart ass.