Can You Hear Me Now?

Okay, I know, I’m a bad blogger with my inconsistent updates! My treatment didn’t give me back the use of my right hand or improved vision or any of that stuff (yet) that would make this blogging process easier.

I have good days and bad days with my fatigue. I think overall it is better than it was. It seems like before a symptom improves it goes back and forth for awhile and then it stays gone. Like the being able to scratch an itch on my right side without going into major painful spasms. I thought it was a sure thing, then it came back, then went away, came back… now it has been about a week so I think I can safely say it’s gone and I can scratch! So maybe the fatigue will be gone for good soon. My brother’s girlfriend commented today that my eyes definitely look better, like they are in focus. That hasn’t reached my brain yet, but I hope it will! And my bladder… fingers crossed that will improve, too. Today is a pretty good day with that so perhaps it’s starting.

My body has been deprived of proper blood flow for soooooo long. I need to keep reminding myself that this will not happen overnight. But it’s hard when you see your friends jumping up and down 24 hours after their treatments even when they have had MS as long as you. Or handwriting again. Or using a fork. Sigh… we are all different blah blah blah I know.

I owe you an entry all about my trip to Costa Rica. I’m not sure I’ll actually get around to it, there’s too much to type about! Maybe I’ll do a bulleted version at some point. Right now I just want to do an update to show off my new award:

Which I think they just sent to every MS blog they could find, because they told me my “readers voted” but who actually reads this? LOL That’s why I took out their link. If I ever find out it’s the real deal and people voted I’ll give them credit. Until then, they are spam, but I’ll display the badge! Not sure how to put things on my side bar permanently with a Wordpress template.

I am taking a huge step forward with my health. I figured, I spent (well, my family and some dear friends) a fortune going to Costa Rica for a medical procedure that may have saved my life, so what’s the harm in spending more for some other help I really need. I am going off sleeping pills! I am going to end this 8+ year addiction once and for all and end this vicious cycle I have been on for years. You know… the pills don’t work anymore so I need more and I barely sleep anyway but I’m so addicted I can’t even fall asleep in the first place without them… it’s been rough. And the side effects of sleeping pills are surely making my MS symptoms worse than they would be (double vision! Blurry vision! Dizziness! Balance issues! Etc.!) So I was searching for answers and stumbled upon Point of Return and after thoroughly reading through their site I decided to go for it. The fact their lead physician has progressive MS and has managed to keep it in check with nutrition didn’t hurt, either. Before I even received my package I filled out a big questionnaire and then received a lovely personal response from the founder who gave me some great advice and hope. Reading her story in the book they send you made me cry! Although I am not on as many pills as she was (antidepressants, sleep meds, anti-anxiety, pain, you name it) I totally identified with her and the way she described how the pills take over your life and change your personality and the core of who you are. I just bawled and bawled and now believe there is hope for me, too. I am on day 9 of my pre-tapering nutritional build up and will begin tapering next weekend. My doctor wrote a prescription for the compound pharmacy to taper me 5% a week for 20 weeks. They called and told me that made for odd amounts so they would taper me 1/2 mg/week which I agreed to, but now I realize that is 30 weeks instead of 20 so I need to call them on Monday. I don’t want this to take longer than it has to (plus the products are expensive and you need to stay on them while tapering, it’s part of the program and I’m not doing this half way!)

One thing the founder asked me to do is try to cut back on the Ibuprofen I take because that interferes with sleep. I take an extra strength ibuprofen every night at bedtime, and often another one or two throughout the night, because of my hip pain and basic aches and pains my body gets from just not being able to move properly. Been doing that for years. My friend Beth, who used to be a nurse, was here (first time we had hung out in over 20 years, thanks Facebook!) and I asked “what am I supposed to take, if not ibuprofen? It’s the only thing that seems to help…” and she said “Willow Bark. It’s an anti-inflammatory”. And I was all… huh? You can buy willow bark at the health food store so the next day I found some, and have NOT TAKEN AN IBUPROFEN SINCE. It’s amazing! It really works! For headaches, menstrual pain, and all my hip and body pains. I only take 2 at bedtime and don’t need a repeat during the night. Amazing!

Another thing I’ve had to quit is my 5-HTP and calcium supplements. There’s a whole list of things I need to avoid while tapering off sleeping pills, including bananas! Oh, the doctor in Kuwait who is doing all the CCSVI research (Kuwait is one country that has approved the procedure for ALL MS patients to get right away) is swearing up and down that “I am 100% sure that overloaded Calcium is the main reason tor MS- CCSVI . And 72 other diseases”. He suggests stopping calcium and even Vit. D because it is a calcium retainer. “So keep taking Magnesium and B6 till all MS syndromes disappear.” Hm. Interesting. I know of a woman who, after tons of research and reading papers by a “world expert on the entire architecture of the motor neurons in the central nervous system” started taking calcium channel blockers and her MS is in remission. I Know two woman with MS who swear by large doses of B6. So there may be something to all this! No more calcium supplements for me and I better get me some vitamin B6.

In the meantime, I am taking my glutathione and Omega 3 to build up my system so it can handle the Big Sleeping Pill Taper of 2010™ .

I will leave you with this:

This man must be Calgary’s next Mayor.
Click photo for more info!

It looks like I’ll be getting a whole BUNCH of the stuff on my 101 list done over the next month or so, because…

I AM MOVING!

If you can believe it, finally. After 7 years in this place with the 70’s mod yellow/gold floors and yellow counters and 20 year old carpets and 25+ year old gold stove and scratched up gross brown kitchen cupboards and every wall in DIRE need of a fresh coat of paint.

Where am I headed? Well, kitty corner, to the building across the parking lot. Just a few feet away, but a world of difference. The rental office called me and said “good news, a wheelchair apartment opened up! I’m giving you first dibs.” I went over to look at it that afternoon, and was sold immediately. Wider doorways, HUGE bathroom, nice flooring, nice counters, bright, white kitchen cupboards and all white appliances, newer carpets with an actual UNDERLAY (presently missing from mine. Oh, WHY did I waste money getting them shampooed recently? They are just going to rip this place apart when I’m out).

When they called and told me about the new apartment, I got excited also because I figured I’d get a new view. Right now my patio door windows show me the parking lot and Sears. So I get to this new apartment, open the patio blinds and see… parking and Sears LOL. Actually there is more grass because my new patio doesn’t exactly meet up with the parking lot like it does here, but you see it. And the side of the old pool house which is now the garbage area, so I guess you could say the view is no better. Time will tell if the sun beats in there like it does here… I have a feeling it will. But soon I shall be LIBERATED and maybe the heat won’t bother me as much? Yeah!

Speaking of, the MS Clinic called me recently to book an appointment to see the physiatrist there next month. I said “I don’t think I need to see him for any reason” and they were all, “oh?” and I said “I’m actually going the CCSVI route so I don’t think I’ll be back to the MS Clinic.” She was all “oh, okay, stutter stutter hang up”. I mean, in all honesty, the only help I have ever received from the MS Clinic was from the physio/occupational therapists at the OPTIMUS program. My neuro hasn’t done a damn thing for me when I really look at everything over the years. You always feel like you are doing the “right thing” by making annual visits to the MS Clinic and seeing doctors there, but when I break it down into anything useful… there is nothing. NOTHING. They run you around to see other specialists and prescribe drugs to try which obviously makes them feel useful, but all of this has lead to no improvement in my quality of life. I really don’t see why I would ever go back.

I have been in touch with Bulgaria, Poland, Germany, Scotland, Mexico, New York and Phoenix, AZ about treatment. I will be going SOMEWHERE, one day soon, to be Liberated. I really need to get my passport so I’m ready to go at a moment’s notice. I will be getting my own copy of my Doppler ultrasound and the Interventional Radiologist’s interpretation SOON, (it was due over a week ago, but the only doctor there that can actually interpret the results was called away on a family emergency so all is delayed) and will start shipping copies around! So even if my own doctor can’t help me, I will find one who will. Stupid Canada. We’re all leaving to get this done elsewhere because you won’t allow vascular doctors to do their job. We would pay for it out of our own pockets to have it done here, but NO. We can pay to have boob implants and take those risks, but a simple venous angioplasty (that is done on people without MS, on the same veins, every day) needs double blind studies while our MS gets worse. Sigh.

So, my bladder. I know you’ve been dying to hear. Turns out Mz. Drama Queen had a bladder infection and a few days of antibiotics cleared it up and things are back to normal. Which is not GREAT, but at least I don’t need a catheter. And the only reason I found out is because my Home Care Nurse insisted I get a urinalysis before getting the catheter, “just in case there is an infection” and I was all, “I DON’T GET BLADDER INFECTIONS! I DON’T HAVE AN INFECTION, I KNOWWWWWW IT!” and she was all “just get your doctor to fax a requisition and pee in the damn cup”. The next day my doctor’s office called and said “the test came back positive for an infection, where do you want us to call in the prescription?” and I was all… oops.

I am worried about my buddy Nick from the care centre. We keep in touch on Facebook. He has moved into the long term care on the first floor and I would like to go visit him one of these days, bring him some Peter’s Drive In. Anyway, he went in on, I think about May 6, for his neck surgery. His hope is that this surgery would enable him to move his limbs again and maybe even get out of that place! He announced he would be in the hospital 4-5 days and wouldn’t be online. Well, it has been more than 10 days and still no peep from him. I hope he’s okay! I guess I could call his unit. Not sure if they give out that sort of information on the phone, but maybe they can at least tell me if he is there or not.

I need new passport photos. I didn’t realize the ones I had were taken over a year ago! Crikey. I also didn’t realize that just a year ago I could get myself on and off my scooter and out to the mall. On my own. SHIT. I better get liberated soon, this is depressing me. I hope I get some of that back!

Well that was yesterday, and I got new passport photos this afternoon. They are even worse than those last ones, if that is humanly possible! Next step is to get the actual passport. Hopefully by early next week!

I also received the results of my doppler ultrasound, and I’m not happy. I haven’t heard from anyone who went to this clinic and got positive results, so I’m starting to think they don’t know what they are doing. Either that, or my problems are not in my jugulars and are in my azygos veins or something. But this ultrasound is a very specific test that needs to be done a certain way, which is why many technicians go to Italy to be trained by Dr. Zamboni. Which no one at this clinic did, so I fear they are handing out false negatives and putting that in their study, which is only going to make CCSVI look like a hoax. Which it totally isn’t. Out of probably 800 people that have had the venogram prior to treatment (the proper test) I think only 2 or 3 haven’t had any blockages. That would break my heart, but I am 100% sure I have blockages and can t wait to be tested properly and let this clinic know they were wrong.

I am waiting for a call back from an Interventional Radiologist in the U.S. and I’m going nuts! CALL ME! That’s the big difference between health care in the U.S. and Canada. I can’t actually call my doctor and talk to him… I mean, I can try, I can leave messages, but I end up talking to an office manager or an LPN. Only once in my life have I ever talked on the phone to a doctor that performed a surgery on me… and that was because I was hella pissed off at him and the treatment he gave me and I think he knew I was ready to report him to the College of Physicians and Surgeons so he was trying to be all nice. (Didn’t work). Anyway, in the States, you actually HIRE your own doctor by shopping around, where as here we get referrals by our GP and it’s pretty much wherever they can get you in. I called an Interventional Radiologist’s office in New York, talked to the lady that answered the phone about the CCSVI treatment, and she said the doctor would call me back in a day or two (their line up is pretty long now). The IR called me back. The actual doctor that would be performing the procedure! We talked for quite awhile, he was super nice, and he even emailed me within minutes of getting off the phone so I would have his email address and could contact him anytime. My doctor wouldn’t give me his email address if I paid him! (Of course, every doctor is different, I am sure some of my friends have more accessible doctors than I do. It’s just different here. We’re so short of family doctors, you’re lucky if you can find one that will take you on as a patient, never mind “shopping around”). Same with this other doctor I am waiting to hear from. The first time I called her clinic and explained to the receptionist what I wanted, they gave me the doctor’s direct line and when I called she actually answered, and we talked for quite awhile about the procedure and her interest in performing it. Plus she emailed me back later that day. I’m blown away! Accessible surgeons you can actually hire based on your own feelings about them!

I hope she calls me back tomorrow. I want to send her my ultrasound results and ask her if she is willing to test me further/treat me. I’ll be on the first plane. As soon as I get my passport!

Well, once you’ve made “going home” your goal, they certainly don’t waste any time. I’m a “possible discharge” for Wednesday already, and the only reason they are waiting that long is because I won’t be around here tomorrow to talk to, the social worker is off Monday, and my mom is off Wednesday and will be able to get my power chair home in their trailer that day. I am going to try to talk with someone tomorrow morning before I leave for the day, to try to get more time. I really want to get set up with a lock box at the front door so Home Care (and anyone I want) can access a key to let themselves in. AND I have an amazing opportunity on Wednesday afternoon I still want to be here for.

That would be The Bioness Foot Drop System. I saw a short piece on the news about it the other night (and I never watch the news, or barely any TV here at all, so that was fate) and I thought, woah, that is perfect for me! So I went to their website, didn’t see a location in Calgary, so I emailed them and asked. I heard back from a guy in Montreal who said “oh, perfect timing, we are coming into Calgary NEXT WEEK, can we make an appointment to see you on Wednesday?” D’oh! I tell you, it’s fate. I told him about my current situation, and he wants to come to see me here on Wednesday afternoon with the physiotherapist. I didn’t get that email until 7:00 tonight though, so I haven’t been able to ask anyone if I can stay an extra day for this appointment. I think the physio here would really benefit from the visit too, so I hope they go for it.

Now, these units cost several thousand dollars, but I know from researching it that the government is buying 500 units (from a different manufacturer, though) and funding a Pilot Project for those who qualify. So if Bioness is trying to get in on a piece of that action and I qualify, then I should be able to get funded for it. If Bioness just wants me to buy it, I will say no thanks and go to one of the suppliers that the government is funding for the project (I got all that information today, too, from the place that made my AFO). I just need to qualify, which I will know on Wednesday, and agree to many follow up appointments over the next year. I can do that! If it means I will be walking again, a LOT more!! I will have to walk my very best on Wednesday, to prove to them I am a good candidate. You need to be able to walk at least 10 meters (33 feet). Hopefully that is while wearing an AFO.

Anyway, there are a few things I want to get arranged before I go home. Their only concern is that home care is in place, but really, they let another woman with MS stay here until her house was finished being renovated and more suitable for her, so they sure as hell better not kick me out until I have everything I want in place. Except a new apartment, I know I can’t live here while looking for that. Although… house renos/accessible apartment? Isn’t the waiting time similar? I think they played favourites with her. Hmmm…

I just received an email that made me cry. Ange, if you’re reading this, you made me cry! Love to you, and I will respond ASAP.

I tried to have a conversation/screaming match with my roommate tonight. It went kind of okay. I feel bad for her because she is so alone and sooooo bored. Her son comes once every few days, but she doesn’t have the ability to make friends (hard enough with this crowd, anyway!) or a computer or her own TV that she can turn up as loud as she wants. The past few days she has been putting herself to bed at 1:00, thinking (and probably hoping) that it was bed time, until the staff caught her (they don’t respond to those alarms very fast).

Rick was doing better today. I hear his wife is coming to stay here for her recovery as well, so I’m sure that cheered him up. Tom, on the other hand, has been replaced at our table by Garth. I panicked, “what happened to Tom?!” and was told he is too sick and will not be returning to the dining room for meals. Goddammit. Nothing against Garth, who is funny and talkative and interesting and only in his mid-50’s, but Goddammit. Nick reads my Facebook so he knows I’m going home next week, and was all “not fair! I’m going to die in this place!” Geez, I hope not.

Pita, hanging out.

This was one of my Meals on Wheels dinners. Ick. Even Pita just picked at it!

Today I’m attempting the “don’t speak for an entire day” from my 101 list. I figure I’d do that one early in case I don’t succeed… I will have every other Sunday to keep trying! I am Home Care free every second Sunday. I consider it my “day off”. I don’t have to get up for anyone or anything, I stay in jammies all day, I catch up on recorded TV shows from during the week that I didn’t get around to watching yet. Today I think I’ll rent “Bruno” because so many shows ran repeats because of US Thanksgiving. I watched “Funny People” last night. It was good, but not funny! If that’s what you’re expecting. Of course it has funny bits, but it’s about the lives of stand up comedians and that is rarely funny. If you’ve ever known any. The grumpiest, complainy, most depressing person I ever knew/sorta dated was a comedian.

I’m also doing my second “liquids only” day. No food, no talking. It’s like I’ve put myself in solitary confinement! Actually though, yesterday I went out for lunch with a friend and ate so much I was still stuffed when I went to bed. I also strayed from my Core Balance food plan by eating a whole wheat pancake with syrup, (wheat, sugar) so figured I’d follow that with a day of organic fruit juice to make up for it.

Speaking of food, or lack thereof, I did sign up for Meals on Wheels a few weeks ago. I lasted three days. It was hella disgusting! Wow. Their website says you can get “75-80% of your nutritional needs met” with their meals (lunch/dinner). I’d like to know what food group Jell-o falls into? I threw out more than I ate. All three dinners were gross… mashed potatoes from a box, soggy vegetables from a can, and some kind of processed chicken “meat”. Think of the worst food you’ve ever been served in a hospital and imagine it even worse. I can’t believe there are seniors and people out there that have no other choice but to eat this crap. I now buy some groceries for my mom and when she makes dinners, soups or chili she sets some aside in containers and freezes them for me. When she comes over on the weekend she brings food for my freezer and I’ll get her to make me a stack of sandwiches and hard boiled eggs for the week.

Ugh. Now I’m hungry for an almond butter sandwich on organic kamut bread. Heh. Mom’s in MEXICO right now, so I’m going to attempt to make my own hard boiled eggs today. I’m a little worried about the pot lifting, so I may wait until dad is here tomorrow. Hard boiled eggs is about the only way I will get protein in me for breakfast.

Hm. Well the above was written two weeks ago, I’m obviously not on the blog ball. I DID end up renting Bruno. I did NOT need to see that. Some parts were very funny and shocking in a *good* way (the parents? Willing to put their kids in any situation for fame?! The “gay therapist” guy?!) but most of it was shocking in a NOT so good way. A little too much there, Mr. Cohen.

I also didn’t stick with the “no talking”. I was doing so well and then I totally forgot about it when my phone rang at 8:30 and I answered it.

YAAAAAY I saw The Polyjesters on Friday night. They were performing for a Swing Dance Calgary event so everyone there was a swing dancer except me and Shawna. Talk about fun! They’re a young and energetic group of people who filled the dance floor like a scene out of the 1920’s. So naturally the PJ’s played all their old swing and jazzy covers rather than their usual set lists. Every show is different with them. And I LOVE to hear Jason scat, and sing like Louis Armstrong, and Sheldon is great at belting out Billie Holiday. I got to take my power chair out again and ride Handi-Bus with Shawna’s help. Thank God for Shawna. She helped me sooooooo much that night! It helps that she has been working in the field (around persons with disabilities) her entire career and is a Handi-Bus expert! We both need to call and complain about the driver we had for the ride home. What an ASS.

So, we have snow. And cold. It sucks to be here right now, lemme tell ya. Last weekend I didn’t get any Home Care because no one could GET to me, the roads were so bad and they didn’t even start plowing in my building’s parking lot until Monday. It’s really bad ths weekend, too, but my home care did make it eventually. Right now we are sitting at -27° C (-16.6° F). Brrr. We are getting a Chinook next week, thank you Mother Nature.

Last weekend I worked on my “10 happiest moments” list and I couldn’t narrow it down to just “moments” or just 10. I didn’t even have to think about it so I know if I actually thought about it, there would be so many more beyond the few years I hit on. Anywhere, here is the list I compiled, and where they happened during a time I had this blog I linked to it, so for a trip down memory lane and the days where I was mobile and able to travel and get myself out and about, click away. They are in no semblance of order.

1. Old Montreal with Rob, Lindy, Emma, Lobelia
2. Dinner with the Polyjesters backstage before a show, taking pics
3. The day AH asked me out
4. The day I arrived in Montreal and met Emma in person for the first time
5. The day I arrived in New Zealand and met Katrina in person!
6. Folk Alliance in Montreal
7. The day I bought my own condo
8. When the biggest crush of my teen years tweeted me back on Twitter
9. The day I got my kitties
10. Dinner with the Polyjesters, Kim and Rob in Medicine Hat… that whole night
11. The day Susan Jeffers called me
12. When Jim and Pam got married on The Office (kidding! Just seeing if you’re paying attention)
13. That trip to Toronto when everything worked out like a dream!
14. When Sheldon made that video for me on Facebook
15. I might as well just say any time I spend with Jason, Sheldon and The Polyjester family tops this list. Like the casino on my 40th birthday with The Trailer Park Boys and all that. Or their CD release party where they treated me like a Queen (again). I could do a Top 100 moments of my life starring The Polyjesters.
16. Personal concert in my living room from Peter Katz
17. When Rob was here the day after I finally arrived home from 2 months in hospitals after the Wrist Break/Gallbladder Gate ‘06
18. Rob Szabo and the gang taking me to South Country Music Fair for the weekend
19. When I was in charge of booking/promoting the improv comedy troupe at this bar, and I PACKED the place. With media, too.
20. Oh, flashback to 1990 when The Phantoms (band I worked for and saw a billion times in the late 80’s in Toronto) were in town and I had them over for dinner and made the best cheesecake on earth. Now I could go on and list 1,000 things about The Phantoms and my days in Toronto and seeing Duran Duran live in 1984 and ohhhhh shit, this I why I can’t think about it too much!

I guess the challenge IS to actually remember every single happy moment and narrow it down to a top 10. Maybe I’ll do that when I write my book! In the meantime, this has sufficiently depressed me which I don’t think it’s supposed to do. I guess I feel like the best times of my life are behind me and now I just have assisted living and memories of how much fun I used to have ahead of me. GAH I almost made it through an entire entry without feeling sorry for myself! Dammit. So close.

Pepper would like you to know she’s the one with the big black mark on her back left leg.

And Pita would like you to know she’s the one with the colour on her front right leg.

I do realize I am LONG overdue for an update. And I will get to one… I’m just so far behind that every time I think about updating I feel too overwhelmed to actually write it. So I’ll get around to a bulleted version of an update soon. But for now, I have decided that the following is important and worthy of the time it takes me to put one of these together.

In 1982, I was 14 years old. And 14 year old girls get crushes on cute, famous boys. For me, it was Christopher Atkins. I loved him with every ounce of my being. I was only 12 when Blue Lagoon came out, which my friend’s mom snuck us into the theatre to see, but it wasn’t until I was a little older that I saw The Pirate Movie (many times) and realized what LOVE was and how this beautiful boy was my one and only. I mean, check it out, can you blame me??

Seriously. I was 14. He had it all.

Flash forward, 27 years. I’m a 41 year old woman who just happens to like hanging out on Twitter. And, Christopher Atkins is a 48 year old man, who just happens to have a Twitter account. And the Tweeting goes a little something like this:

Christopher Atkins: Pet peeve - No parking spots - I turn around and go home.

Me: Haha you need to go out with me, I use a wheelchair and get ALL the good spots!

Christopher Atkins: lol! Yes I should!

And there you have it. Dreams do come true, girls. It may have taken 27 years, but Christopher Atkins asked me out on a date.

Sorta.

Never lose hope.

(I seriously teenage-girlie-screamed when I got a response from him… *sigh*)

I was so shook up by the time I reached the hospital for my physio appointment the other day, I almost didn’t go in. Well, that’s not quite true, of course I went in, but I laid on the table and just breathed for about 10 minutes before anything else. This was all thanks to Access Calgary and their lovely Handi-bus vehicles. Holy shit! Those are the worst vehicles on the road. When I was able to go out with just my walker, I had a Doctor’s note in my file to never send me a Handi-bus because they have absolutely no shock absorption and toss you around like a rag doll (once I hit my head pretty hard on the window) plus they have no air conditioning. When you’re stuck on a city-wide trip in the summer that is brutal for MSers. Then in the winter, they open the back up to let the ramp down and leave it that way while they go looking for their next passenger. Not fun to sit there when it’s -30 outside. So anyway, I managed to keep myself as “car only” for many years, but now that I need to go out with my scooter (and soon my power chair) I have no choice in the matter. A few times I have lucked out and a wheelchair van has showed up, which is nice, but usually it is those horrible clunky Handi-busses. Tuesday was especially awful because I got a bit of a city tour, going waaaaay past my destination to pick up another two people and drop me off on the way back. There were many, many speed bumps, tight corners turned at too fast a speed, and very uneven concrete roads. At one point I felt one of my wheels lift up and I thought I was going to topple over. I flew up in the air several times. I screamed… twice. And to think, with the Calgary Stampede so close, I’ve been thinking about how long it’s been since I’ve been able to ride on a roller coaster. At least on a roller coaster you’ve got bars around you to feel secure. Yikes. I was scared shitless.

The rides are always horrible, especially over speed bumps, but I usually get direct trips to the hospital because it is so close. I have never had to deal with a run like this. Now I am afraid to book a trip to anywhere further from me in the city! Maybe it will be better in a wheelchair. If you’re on a 3 wheel scooter they want you to transfer to a seat for safety reasons, but I am unable to do that so I stay seated on my scooter and feel pretty uneasy about it. Although on Tuesday the bus was too full for me to transfer even if I could, with 3 ambulatory passengers on the seats, a person in a wheelchair and me on my scooter. I guess I have another reason to seek out a 4 wheeled scooter again. one of these days I’ll get on that… for now I’m still awaiting the arrival of my power wheelchair and then I need to get to work on setting up self-managed care. Oh, and next week I have an appointment to get my ankle/foot orthotic looked at to see if there are some changes they can make to it so I can actually put it on and wear it. Hey, that only took three years! Hopefully if it works I’ll be walking safely and more often again. My Home Care nurse/coordinator has been fighting the good fight for me on this one for over two years. Finally someone listened! I need to get a shoe for it this week.

The above was written a couple days ago! Yesterday I found my shoes. In fact, it took me all of 30 seconds to find them. I needed a shoe with velcro straps in a size bigger than I wear, wide. I rode into Payless Shoes (where, it turns out, my scooter sets off the security alarms, and they didn’t stop until I left. That was nice). The only aisle that had room for me (the store was busy. And did I mention I set off the alarms? The staff must be used to it because they were not phased) just happened to have women’s size 9-1/2 at the end. I spotted some black running shoes, and when I pulled out the box they just happened to be a wide, with velcro straps across the top. Sold! That was easy.

Before that, however, I spent an hour in a periotontist chair getting my gums scaled. They are in such bad shape, she could only do my top teeth and they needed to freeze my gums. The hygienist lectured me (nicely) about taking better care of my extremely infected and inflamed gums. I know, I know. I’m going to have to get my daily home care “plan” to include dental hygiene assistance. My main excuse for not spending time on my teeth is the difficulty standing at the sink, brushing my teeth with my one good hand while trying to stay balanced. But there is lots I can do seated while watching TV. I solved my one handed flossing woes ages ago, so I really don’t have an excuse. Just DO it.

So after I got home I went back out to the mall to pick up an Oral B Vitality to use until I get a replacement head for my Sonicare (dad took it to find one for me) and the shoes. As I was riding my scooter up the mall, a lady came along beside me, smiled, and said “hope you’re having a good day!” or something very friendly like that. She stayed beside me and said “it’s so great to see you out and about.” She didn’t mean me exactly, it was more of a general statement about people with mobility problems being able to get out on motorized scooters and chairs. I ended up stopping and chatting with her for a bit. She told me she used to take care of this older gentleman until “they put him in the Fanning Centre” (assisted living facility). I asked, “oh, you’re a caregiver?” and she said she’s not officially, but loves to do that sort of stuff and take care of people. She started listing people/family she has cared for over the years. She used to be a waitress but isn’t able to do that anymore (I didn’t ask why, maybe I should have? Did she poison her customers?) so now she cleans houses. She offered herself up to be of assistance to me if I ever need it, “clean your house, do your laundry, cook, paint your nails… I do everything except build houses! And I don’t charge a lot. I really just love helping people”. She wrote down her name and number with “cleaner, handy, loving girl” under it. So…. Angel sent from above, or total whackjob? I’m sure I’ll find out ’cause I know I’ll call her at some point. She seems to be around my age, one of those people a little rough around the edges with a heart of gold. In fact, she TOLD me she has a heart of gold, so there ya go. Will be interesting to see if she really is as kind and giving as she appeared to be, and if in the future when I get into self-managed care I end up hiring her! As she left, she told me and my completely frozen, drooling mouth, “you have a very pretty smile”.

I’m doing better since I cut back to 10 StemEnhance per day. I was definitely detoxing before, so I feel normal again. Dare I say I’m noticing it’s a little easier to get up from the toilet, my chair, my scooter, etc.? No, I won’t get too excited yet. But that has been quite noticeable the past few days compared to the past year! Shhhh.

Oh my God, my friend Emma in Toronto (for now, until she is done school in a couple weeks and then goes back to Montreal until she heads to SCOTLAND for school in the fall, where she got a scholarship at some music industry school, and I am making no sense, but oh my God it is so exciting and I am so proud of her and the corruption I thought I caused her at age 15) did the coolest thing the other day. We were talking over Skype, and since we both have MacBooks, Emma suggested we try iChat (Skype was very fuzzy). With iChat there is a “share screen” feature, and we were able to go on the other person’s computer. Like, I was able to snoop through Emma’s files and emails and listen to her iTunes and everything. Unbelievable. I totally freaked out, that was the coolest thing ever.

Okay that part was written yesterday, and I am determined to finish this up tonight.

This morning I went back to the mall and returned the Oral B Vitality, because, really, I can live for a few days with a normal toothbrush until I get my Sonicare replaced. I didn’t really need to spend $29 on a toothbrush. But, if you don’t have any other kind of electric toothbrush, it’s supposed to be a really good one for the price.

I was saddened to hear of Farrah Fawcett’s passing this morning, and totally shocked by the death of Michael Jackson! Woah. I used to LOVE Michael. I owned “Off The Wall” and a family I babysat for gave me “Thriller” for Christmas when I was 15. I played them over n’ over n’ over. While curling my hair to look like Farrah’s. It’s a bad day for childhood icons.

However, my greatest love from my teen years, John Taylor from Duran Duran, is alive and well and guest starring on “Samantha Who?” tonight! Woo hoo!

I’ve also been keeping up on the goings on in Iran, via following a few reliable sources on Twitter and my favourite news source, The Daily Show. I’m not able to watch all the video footage because the screams are too much to handle. I did watch most of the footage of Neda’s death but I closed the browser when the blood started pouring and I heard the screams. I made the mistake of clicking on a link and watching a video in the first couple days of the aftermath, when the Basij were storming dorms and attacking/killing students. That was a mistake and that boys face and the screams will haunt me forever. This NY Times blog has great coverage if you’re interested. One of the guys in Iran I’m following on Twitter said yesterday “we must go - don’t know when we can get internet- they take one of us, they will torture and get names - now we must move fast.” Good Lord, can you even imagine. We are so lucky to live here.

My mom is coming to stay with me this weekend. That will be nice! She can help me organize in my office and we’re going to watch “The Reader”. I was going to rent it last weekend but my mom said “no! Wait until I come!”

One of these days I will get around to emptying out my memory card on my camera. Until then, Pita still likes to hang out on me and my MacBook.

Hello, I’m here, still alive. Just so far behind in posting anything that I’m going to do this in note form to get caught up. I will need to review Twitter and Facebook statuses to remember my life.

Oh, but first, I want to point something out. I realized something recently that I forgot to mention in my last post. If you have EVER written me an email to my donna@innereyes address or left me a comment that you thought I would respond to (especially first time commenters) and you never heard back from me, it’s because I learned via something Robyn said in her Wordpress blog that spam filters are catching these emails. That was a major “A-HA” moment for me, because I have received a lot of nice emails out of the blue from readers, and I have answered every one of them by just hitting “reply” and using the default innereyes address they sent it to, yet I never heard a peep from these people again, even when I asked them a question back. So I am SO SORRY! I receive all the emails and comments that get sent to innereyes, but I will respond from a different address from now on. This has probably been going on for years! Don’t hate me, if you’re even still reading or you stopped because you thought I was a stuck up snob. I DID respond to you!!

Anyway, about my exciting life you keep coming back to check on:

- I got my PVR hooked up. Telus said they’d be here between noon and 2:00, and they book “4 to 5 hours for the installation”. They arrived at noon, it took 15 minutes max, then they left. No doubt to go spend the sunny afternoon on a patio somewhere on their employer’s dime.

- I love my PVR

- A client came by with his tax stuff (yes, he’s always late) and because the receipts were an unorganized, wrinkled mess-in-a-box, I sent him home and told him to come back when they’re sorted. That USED to be my job, but I am so over that shit. Between my vision issues and the use of only one hand, I am not fighting with receipts anymore. And it really doesn’t bother me if I lose clients over it. I’m not enjoying my work much anymore, so I think it’s time to figure out something else I can still do. Like write that damn book…

- “Samantha Who?”, a TV show I absolutely love, has been cancelled. I joined the Twitter campaign to save it, but I don’t know if it’s helping. Catch the final previously unaired episodes Thursdays starting June 25 on ABC (John Taylor from Duran Duran is on the 25th! Wheee!) They’re showing repeats on Friday nights until then. Great show. Stupid ABC.

- Speaking of stupid ABC, I am watching The Bachelorette although I’m not really paying attention. I do hope the best for my Alberta girl Jillian, however. She’s a sweetie and, hey, the Calgary Stampede was even mentioned in one episode. Yeehaw!

- They did a cockroach inspection in my building because there have “been complaints”. SHIIIIIIT!!! There is no sign of them in my apartment, thank God (and kitty cats), and I hope and pray it stays that way. Once roaches invade a building that is IT. I’m hoping the complainers were really seeing small mice. Because I’ve had that problem and DID get rid of that!

- I’ve been going for physio fairly regularly. Unfortunately, the entire process of arranging the ride, getting out of my apartment, waiting for the ride, the ride itself, exercising, then doing it all again in reverse is sometimes too much for me that day and I have to cancel. Oh, how I wish we could get PT in our homes. The Range of Motion I get from my home care worker is great, and I got it increased to 4X/week, but it’s just simple stretches and doesn’t do anything to improve strength.

- The Executive Producer of the Oprah show is following me on Twitter. She asked her thousands of followers to tell her how long they’d been watching, favourite episodes, etc. and she would follow a few back. I sent several messages because I have been watching Oprah since 1812, and even remember her appearances on The Tonight Show and David Letterman back when she was promoting The Color Purple and her “new show”. So her Exec. Prod. Sheri Salata is following me now and I have yet to say anything brilliant to make her think “wow, we must fly that girl to Chicago and put her on the show.” Maybe she’s not too impressed that I whined about the cost of shipping an Oprah show mug (not to her, just in general). But, seriously? I got an Ellen Degeneres show mug, a book, and shipping to Canada, all for $35US. An Oprah mug is $12 PLUS $35 for shipping! I can’t justify that. I love my Ellen mug, by the way. Great handle.

- AH has been in Lebanon for the past couple of weeks. One of the political parties there offered to fly out any Canadian families with dual citizenship for free, for 30 days, if they voted for them. Not too corrupt now, is it? I don’t know the voting procedures over there, but I’d like to know how they can be sure the vote is going to them? Anyway, I guess their tactic worked because they won.

- I attended a mini high school reunion of a bunch of us ladies that went to school together. It was all organized through our re-connecting on Facebook. It was great fun, my friend Lisa picked me up and although I was assured the location was wheelchair accessible, our gathering was held in a private room that was up two little steps (with no railing otherwise I could have managed). I don’t have one of those chairs you can tilt backwards to roll up steps (I have safety bars to keep it from tilting backwards, but times like this it would be nice to be able to remove them). So two big, strong bartenders carried me in my chair up the steps. Times like this it would also be nice to weigh 92 pounds. Anyway, we had fun, the food and service was amazing, everyone looked fabulous, have fabulous lives and families and money, and I came home and wanted to stab myself. Heh.

- The following weekend my friend Kim and her daughter came into town (from Red Deer area) and we went to Cora’s for lunch. I want to eat there every day.

***Tee hee! I started typing this entry several days ago and right now it is Sunday, June 14. Today my dad, brother and his girlfriend picked me up to go for lunch and wandering through Prince’s Island Park. I talked them into going to Cora’s for lunch. Hee!***

- I downloaded and have been listening to Deepak Chopra’s “Quantum Healing” audiobook. It makes so much sense. I was shocked to hear it was recorded in 1989. That’s 20 years ago! He was talking about this stuff even back then! I wish I had heard it 20 years ago. Of course, 20 years ago I was in good health and wouldn’t have sought it out. That’s the thing; when you are in good health, you don’t think about your health. When you’re struggling with your health, it is all you can think about. Therein lies one of the problems. An interesting part of the audio is the good reminder that our cells are constantly dying off and being replaced with new ones. The skin is replaced every month, the liver every 6 weeks. Over the course of a year we have an entire new brain! The stomach tumor diagnosed a few months ago is not composed of the same set of cells as is there today, now repeating the pattern that was set into place earlier. Our cells replicate based on our patterns and beliefs. Happy thoughts produce happy molecules, unhappy thoughts produce unhappy molecules. Although cases of spontaneous deathly cancer cures and disease remissions are rare, they do happen enough to believe it is possible to change our patterns and heal. Chopra says “everyone’s body knows how to heal a cut. Apparently a few people have bodies that know how to cure cancer. Every day a few cancer cells arise in your body, and automatically the DNA, the intelligence in your body knows how to take care of them. So called “spontaneous” remissions are nothing more than an exaggerated phenomenon of what is happening all the time”. There is a lot more to it than that, obviously, and it makes me want to look into Ayurvedic medicine a lot more. I’d like a body that knows how to heal MS! Louise Hay has always said to use the healing affirmation “I am willing to release the pattern in me that has created this condition.” I do say that every day, but not very often and I probably follow it shortly after with a swear word or two so a lot of good that does me!

- Speaking of cells and cell health, I’ve been taking StemEnhance in the large doses for just over a month now. No difference yet. But if the new stem cells I’m making are a part of my old MS thought pattern, and I don’t make healthy cells, then by enhancing the amount I make, could I be making myself worse? Ahhhhh. Of course the scientist behind the product would say “no”, but my basic common sense has me wondering. So every time I take 2 StemEnhance capsules I now follow it with a 1/4 tsp. of Ambrotose, which is supposed to support cellular health and “cell to cell” communication. I know from personal experience (I started taking Ambrotose in 2000) that it is a good product and certainly helps with MS fatigue, but like every other supplement I got lazy about taking it and the cost is so high… but since I have a couple of unopened jars around here I decided this was as good a time as any to commit to taking at least minimal amounts along with the StemEnhance and it should be a great combination! If the claims are true, StemEnhance makes MORE stem cells, and Ambrotose makes those cells healthy. I am an MLM distributor’s dream! Also, a human guinea pig. I’m going to call some StemTech people today because the more I think about that, the more it has me worried. Otherwise, I plan to do this for at least 2 more months before I draw any conclusions. And the next place I’ll use my credit card is right here. I really need to win a lottery, this stuff is expensive!

- I went to the information session on Self-Managed Care. Wow, they sure do overwhelm you and don’t make it easy for you. I think I will go for it, though, because at this point I really do need more assistance than regular home care can provide me with. However, I am looking at at least a year long waiting list so it won’t happen anytime soon. They only have 500 people in the program (out of the 11,000 home care clients in the city) with 58 people on the waiting list. No one gets in unless someone leaves (death or move to assisted living) plus they prioritize the waiting list. Since I’m already receiving a fair bit of home care service with my 6 days per week personal care, 4 days range of motion and an hour every 2 weeks for homemaking, I’m told I’d be at the bottom of the priority list. Bah. Anyway, I’ll be assessed at some point to decide on how much I qualify for (I want to hire someone that can help me get in a POOL!!!) and get on that list. As it is, any friends or family that visit me become automatic caregivers for the duration of their visit because I don’t have one! And that is not fair.

- The assessment will be done by my O/T, but he’s a little busy for me right now because I received my approval letter for the power wheelchair!!! I’m not sure when exactly I’ll be getting it, but I AM getting it! Woo hoo!

- I saw a couple good movies, He’s Just Not That Into You and Role Models (soooooo funny! Jane Lynch at her hilarious best!) I have seen commercials for movies I want to see, and some that… well… Eddie Murphy needs to stop making movies.

- I may bitch about our government from time to time, as is my right as a voter, but I am truly blessed to live in Canada. I read other blogs and what other MSers go through and the costs to get medication and help and I am so lucky. Also? Signed another one year contract for my rent subsidy. Between my AISH (Assured Income for the Severely Handicapped), my rent subsidy and all medical and home care costs paid for, a person can actually live a modest life with a little dignity and not file for bankruptcy because they can’t afford their medical bills. Of course, I still think our Health Care system is a “Sick Care” system and as I choose natural health products, procedures and supplements I’m on my own, when it comes right down to it I do take a couple meds I don’t have to pay for and see doctors and dentists and stay in hospitals and get a POWER WHEELCHAIR and daily help to shower and dress and… I’m lucky. Thank you Government for letting me count.

- This You Tube sensation is a local guy. He made front page news here. He needs to go on Ellen, no one would appreciate the power of one person dancing to start something like that more than her!

I think the cats knocked my card reader onto the floor in behind the shelf where I keep my Macbook, so I can’t get to all the pictures on my camera. So these are from my dad’s Blackberry again.

Pita and Pepper had a stare-down the other day. It started in the living room with Pepper ready to smack down Pita, but turned into a staring contest with Pita slowly walking backwards and Pepper following her, never taking their eyes off each other, ready to pounce at any moment. It’s times like this you realize why you MUST have more than one cat.

And the winner is… Pepper!

But Pita is still a STAR.

For the first time in a long time, I can honestly say I’m feeling good, and looking forward to the future! My God, it’s been forever since I felt this way.

I think it’s a combination of a few things. For starters, my big shipment of StemEnhance arrived and I’m working my way up to 2 capsules every two hours. I’m really hopeful that this is going to help me a lot. I also met with my new Physiotherapist I’ll be seeing at the hospital near me, and he was so positive that I can get some mobility back, that it made me more optimistic, too. He is really nice, and I’ll be seeing him twice/week for the time being. I’m sure I will eventually be referred back to the group exercise classes at Living Well with a Chronic Illness, which is fine as long as I’m able to do it. But for now, I’m thrilled to have some one-on-one P/T for at least a month or so. Between physio, Range of Motion exercises with my home care and my Chi Machine, I’m getting a decent amount of exercise and will hopefully be able to add walks up and down the hallway to that list soon (when I I feel stronger and more balanced and confident!)

Once I decided to pursue self-managed care, that took a load off, too. Even though it may take 6 months or so to set up, at least I can look towards the future and the possibilities of having a lot more help getting out and about and getting to the POOL and even a fresh salad prepared for me once in awhile (I seriously will not prepare or eat salad on my own, but if it is prepared for me, even from a bag, and handed to me I will not only eat it, but I will enjoy it. I need a wife). I tried to get into the self-managed care presentation on May 7 but it was booked solid. I’ll be going next month. And if you don’t show up, you are BLACKLISTED. They have huge waiting lists. That’s why even if I decide to do it and get my assessment it takes months for the funding to come through. So, in the meantime, if StemEnhance does its job I won’t NEED extra care, thankyouverymuch.

The other thing that has helped lift my spirits is that I FINALLY got the proper forms filled out and went through the numerous channels and made several phone calls to get Access Calgary to change my mobility status from “ambulatory” to the fact that I will mostly be using my scooter (and power chair, if I get it) when I go out, so they stop sending me regular cars and send me wheelchair vans or busses instead. This gives me a whole lot of freedom! Yesterday I went to my physio appointment ALL BY MYSELF! Until I get my power chair I will still need my dad to take me to most medical appointments in my folding chair because my scooter is too big to fit into most offices (and restaurants and live music venues and other places I want to go). But now I can make arrangements to spend an afternoon wandering downtown or in another mall besides the one next door (which is a great little mall and very handy with a Wal-Mart right there, but a change of scenery would be nice. Plus they don’t have a MAC counter or a Purdy’s).

The downside to that status change is that I will never have AH as a driver again because he drives a regular car. Not that I’ve used Access in the past year anyway, and not that AH and I even talk much these days, but it was always a nice thought that there was a chance he’d be the one picking me up and even if the trip was a loooong city-tour one, I wouldn’t complain because I’d have a nice person to talk and laugh with. He’ll just have to get a wheelchair van now, that’s all haha

And that brings me to the next thing that has helped my outlook on life, seeing AH again and having a nice evening out with friends! Shawna and her boyfriend Billy took me out for dinner last weekend, and since Billy and AH are friends (we are the reason Shawna and Billy met in the first place) and our birthdays are the same day, he came along too! I haven’t seen AH in over a year and have barely talked to him. It was so great to see him and reminded me how much I like talking to him and how much fun I have just being around him. And how kind he can be; he reminded me he gets all the movie channels and will record any movies I want to see, and he’s going to bring me pure bovine colostrum (colostrum is really good for your immune system, digestive system, all kinds of things and although you can get it in supplements, AH’s wife gets it directly from the Hutterite’s cows for free). He mixes it with a bit of milk and makes a kind of yogurt out of it. Sounds yuck but it is really good for you.

Billy and Shawna at dinner. Playing with my MacBook photo settings.

Me and AH. I obviously smudged out his features because after everything I have said about him in here, I don’t think it’s a good idea to reveal him completely!

And now that I’ve played around with those photos, I have realized I saved them that way and will never be able to see the originals again. Ack!

Anyway, long time readers know AH and I went through quite a lot there a few years ago when we first met and he was separated from his wife, but I’m pleased to say that although I still think he’s a very attractive man, there is absolutely no physical attraction there anymore. And the more I get to know him as a friend, the more I piece together all the lies he was telling me back then to get me to go out with him (I figured out a doozy last week). It may be water under the bridge now, but man, I don’t understand how any woman could be with a man who lies so often, easily, and effortlessly. That’s scary. At least I’m not the one married to him.

Shawna will be here any minute so I’ll need to take a blog break. I think we are going to see a movie later. Getting out with friends certainly helps a girl going through some rough times handle it better!

So I mentioned about a year ago that I switched my TV from the only choice we used to have, Shaw Cable, to the new service from the phone company, Telus TV. Free digital, one year free service, yadda yadda yadda. So my one year free is up, and when I got my bill yesterday something didn’t seem right, so I called them to ask about it. Also in my mail was a letter from Shaw, asking me to come back to them and they’ll give me a free PVR. I’d also heard Telus was giving away PVRs to new customers. So I decided I am getting a free PVR, too. I called them about my bill, and after that was explained, I told him I’d heard about free PVRs and that Shaw offered me one to go back to them, so what could Telus do for me? He said - get this - “oh, they are not free PVRs. If you agree to a new three year contract, you get a PVR unit and we will set it up for you at no charge. The cost for rental is $20/month, and we credit you back the $20.” So… what you’re telling me is the PVR costs $20/month, but you waive that fee? How is that not free? He put me through to the customer loyalty department where a new guy said “so you want a PVR, and you don’t want to pay for it?” Yes, please. “We can do that.” I asked him if the PVR is “free” for the first year, or the three years of the contract, or what? He said “you don’t pay for the PVR as long as you use Telus TV.” Correct me if I’m wrong, as I’m sure the Telus people will, but that, my friends, is a free PVR. I get it installed next Sunday (yes, their techs work Sundays!) and really look forward to being able to pause live TV so I can go to the bathroom and not miss anything. Apparently I am the first person to say that to the guy on the phone. “Everyone always says ‘go to the kitchen’.” Well. Everyone is obviously LYING.

Shawna and I went to see “17 Again” last night. It was cute. Zac Efron is hot. I’m sorry, but he is. I’m 41 and I’m allowed to say so.

I feel exceptionally good today. I don’t know if the StemEnhance is starting to kick in or what, but I am liking this. I can actually say I like life again, and I haven’t been able to say that for a long time. This is good. Last night I was in bed and I remember feeling sooooo good, snuggled in my comfy bed in my awesome sheets (1200 thread count Egyptian cotton I got for a steal off eBay) and fluffy duvet and just feeling blessed and lucky. I don’t know where it’s coming from, but I hope it keeps on coming. I’m pretty sure listening to Wayne Dyer’s Being in Balance audio on my iPod every day for weeks hasn’t hurt. That stuff has to register at some point.

I am still having a grand ‘ol time on Twitter. I follow some hilariously funny people. Some actors aren’t funny unless they are reading from a script. I don’t follow them for long. But some ARE (Aziz Ansari, I’m looking at you) and even better are the writers that write their funny lines for TV. That’s pretty much what I do on Twitter; laugh and re-tweet things that make me laugh. And toss out the odd original update/observation. I do follow a few friends and authors of blogs I read, and have even connected with some pretty cool people I might not otherwise have come across, but I’m no power-Twitterer. Those people scare me.

Time to fill up the cat food bins and get on my chi machine. Ciao!

I just want to smoosh my face into Pepper. I often do.