Can You Hear Me Now?

i really do NOT like the new Facebook layout, so as such I’ve been spending a little more time snooping around Twitter. I deleted John Mayer from my following list; I decided I don’t really like him. Not my kind of person. Then I deleted Ashton Kutcher and Demi Moore because they kinda bore me and re-tweet too much. I think I’m growing up!

I’m really behind on my blog! I blame my lack of energy and patience due to my lack of sleep. It’s been a rough couple of weeks again. If I have a couple nights where I sleep about 4 hours in a row, I get excited and think it’s improving, and then I go right back to sleepless nights and waking up every hour and maybe getting a total of 4 hours all broken up. I know a lot of it is mental, as I go to bed all anxious, stressed and worried that I won’t sleep again. I spent Sunday researching insomnia treatment and am putting a serious plan into action this week!

Last week I had an appointment with a physiatrist (mobility specialist) at the MS Clinic. I’m not sure what I was expecting, but I thought he’d want to see me walk and offer help to get me a lift in my shoe (over the years my right leg has become longer than my left, due to my uneven gait and, he says, my pelvis dropping because of it), or an Ankle/Foot Orthotic I can actually use (when I broke my wrist and was staying at the Care Center they made me an AFO to wear, that helps my right foot lift up when I walk, but I’ve never worn it because I can’t put it on without lots of help. At the care facility physiotherapists put it on me, and I/we assumed wrongly that I’d be able to put it on one-handed when my wrist healed. HA! I even bought two pairs of the same shoes in different sizes, but even with my brother’s help we couldn’t get it on me!) But that was not the case. He listened to me talk about the issues I’ve faced the past few years and kept shaking his head, “I don’t like what I’m hearing. I don’t like this at all.” That was useful. He asked me why I’m not living in a group home with round-the-clock care (thanks for your support) and told me I’m “melancholy and depressed” and referred me to a psychiatrist I’ve already seen. Well, maybe I wouldn’t be so melancholy if I was getting proper sleep! And seeing a psychiatrist who will want to put me on more drugs isn’t going to help. Well, it might for a little while, but not long term. He also referred me back to the same physiotherapy place I went to a few years ago (where they referred me back to the MS Clinic, but when I told him that he assured me I will get long-term physio there this time). One thing he said that I appreciated and agree with is that he believes a lot of my progression isn’t actual MS progression, it’s due to the broken bones, surgeries, being laid up, getting depressed, gaining weight… all that stuff. And how with regular physio and exercise I should be able to get some mobility back. Hence the referral to the clinic in the hospital close to me. I was told the therapist there used to be at the MS Clinic, and will work well with me, and get me a lift for my shoe if she thinks it will help. So, I hope I start soon, because daily exercise is a part of my Beat Insomnia Plan, and there isn’t a lot I can do on my own. Safely.

I also had a visit from my O/T with a power wheelchair. I wish I could renovate my apartment! I need the carpet and door frames removed from this place. I can’t get a power chair if I can’t get it in and out of the rooms in here, even though I need it mostly for going out. He’s supposed to bring another one to try soon, that turns corners tighter. I also need to write a stronger “client impact statement” so the government knows the chair is going to someone who really needs it, and will use it often, “contributing to the community”. I’m not sure how my medical appointments and physio contribute to the community, but if I can get out and about without needing to arrange appointments around when my dad can take me, I will think of other things. Um… I can go back to my “volunteer work in the arts community” (helping out my musician friends again by actually getting myself out to shows). I can make a nice list of the things I’ll be able to do and how often if that’s what they want.

There is big excitement in my family right now, with the arrival of my brother’s girlfriend from Mexico. Trust me, I want to gossip, but I cannot because everyone knows about this blog. Sigh. I’ll just say they met online, it’s a very interesting story I may be able to share one day in the future, (but probably not), and she’s great. She’s actually originally from Europe and speaks 5 or 6 languages fluently. She’s VERY interesting!

Michael J. Fox was on Oprah today. What an amazing attitude he has. I want to get back to that, too! I’m not as optimistic as I once was and that is a huge detriment to my life. I know it’s inside me, and can be persuaded out with a lot of money and pizza. Failing that, I need a) sleep, and b) a swift kick in the butt.

I have LOTS of work to do now. People are starting to get their info in to me and I’m back to being over run by receipts and taxes! Which is good because I need to pay the bills. So who knows when my next update will be. I hope you read this slow!

My brother has my camera so these photos are from my dad’s Blackberry. Comfy kitties.

This picture of Pepper makes me laugh for hours.

Dad didn’t use a flash because he didn’t want to “disturb” Pita. You know, the cat that disturbs EVERYONE.

I’m out of brownies and I’m out of money. I’ve got to get to work on applying for a prescription. I’ve also got to get to work, period. I could invoice one of my clients very soon if I got off my ass and finished his year end. Procrastination is something I have perfected, if you ever need tips. So have a lot of other people, as I await them to get off their respective asses and bring me their receipts for the year. So I can procrastinate getting their year ends done, as well. And eventually finish up, get paid, pay my insurance, and buy more brownies.

I’m up to my ears in paperwork again. Not just receipts, but various applications as well. I’m applying for a power wheelchair again; Home Care seems to think I can get it based on the fact that even without automatic doors on my building, I do live beside the rental office and have permission from them to buzz them to come open the doors for me. Which I hopefully won’t need to do, as Handi-Bus drivers will help me, I’m sure. My dad took care of the hallway door that was always closed. After purchasing many doorstops that were removed (building management calls it “fire regulations”…. I call it “too lazy to fix the damn door” because every other hallway door in the building has a mechanism that keeps it open 24/7) he found a way to make the door close reeeeeeaaaalllly slow. This way, I can pull the door open with my left hand, and still have time to back up and position my scooter or wheelchair properly to go straight through the door before it slams shut on me. So far this is working when I take my scooter out, and hopefully building maintenance will leave it alone. It does close eventually, and stays that way, after all.

This was started TWO days ago. I am getting lax again. I did, however, finish that client’s year end and invoice him. I also received a cheque from another client and paid my insurance in full for the next year (I unknowingly, all those years ago, timed it well, that my insurance would come up for renewal during my best financial month). Now I need to package up that client’s year end stuff and send it to the accountant (hi, Shel!) and get to work on my OWN taxes, while I await more work. Exciting stuff.

I am enjoying Twitter. I don’t have a lot of (t)witty things to say, but when you follow the right people, you get good laughs. TV characters such as Michael Scott and David Brent; TV writers from shows like “Samantha Who?”, “The Office” and “House”; actors/producers from above-mentioned shows interacting with each other… of course I have hugely popular Tweeters like John Mayer and Ashton Kutcher on there. And of course I respond to them as if they’re actually going to engage in conversation with me one day. HA!

I never did get to see the Good Lovelies on Saturday. Luckily I learned this in time to postpone my 7:00 am home care call! They were just too rushed. They got into Calgary in time for their show and then had to leave early the next morning for Saskatoon. They will be back here in the summer for the Folk Festival and have promised me sufficient hang-out time then.

Oprah was really good today. She had Montel Williams there, and although the show was about several different stars and how they handled being diagnosed with a life-threatening disease, it mainly focused on Montel and MS. It was very interesting. At first I was mad at Montel for thinking he has the right to talk about suicide, depression, and how horrible MS can be, while he walks around without so much as a cane and has full use of his hands. Like, what the hell does he know, really? But that is not fair at all. He suffers pain I don’t even want to know about and has been through a lot that he has kept hidden. He also works DAMN hard in the gym, takes a hand full of supplements every day, and follows a healthy diet. He deserves to be in as good of health as possible for as long as possible.

Which would be easier for me if I had MONEY and could afford the assistance I would need to do all those things now. Take me back to 2002 and let me do it over from there. That’s all I ask. No ankle-breaky, wrist-breaky, messy surgeries or long hospital stays, and my story would be a little different.

Another two days have gone by! I’m seeing a trend.

In that time I have gotten more organized in my office and tomorrow/this weekend I may even get to my OWN taxes. I finally sent in the forms and qualify for the Disability Tax Credit (since 2002) so I know I won’t have to pay anything. But if I have a refund coming I’d like to see it!

I need a date for next Thursday, the 26th! I bought tickets to see Serena Ryder and I obviously can’t go by myself, but I’m having a hell of a time finding someone to come with me! It’s times like this I really need that power wheelchair. I could just book a Handi-bus and go. The application is filled out (thanks, mom!) and the OT is bringing one by for me to try out on Wednesday. Fingers crossed it works out! Then hopefully it won’t be long before I have my very own. Happy to have it, sucks to need it.

So yeah, I need someone to go to Serena with on Thursday! Spread the word to anyone you know in Calgary. 4th row center on the floor. You provide the ride and W/C assistance, I got the tickets.

Before I go, I have to mention a few things:

• RIP Natasha Richardson. What a complete and utter shock. Love and prayers to her loved ones.
• My dear friend, the amazing and talented Peter Katz, is making a new CD and needs our help! Nice perks. Check it out HERE
• The not-married Conchord got married.

This has become a favourite hangout place of Pita’s these days.

I still haven’t received my StemEnhance. I’m so anxious to try it! As for the cannabis brownies, I’ve decided that they don’t help me sleep (I tried dosages up to two grams, and if that didn’t put me to sleep, I don’t even want to try more!) (I know nothing about grams or ounces of pot and what that means, I just know that I can’t afford that much every day until I get a prescription), but if I eat a half gram one around 7 pm, I have a nice evening. My legs aren’t as stiff and cramped up, and everything from walking to getting up from the toilet is just a little bit easier. And my bladder is great! Plus, I go to bed feeling nice and relaxed. Even though it still takes hours to fall asleep.

I learned a little something about all my other meds, though, including my sleeping pills. As I learned a few years ago when I had to go through gallbladder surgery without painkillers, the LDN I take for my MS blocks narcotics (my personal opinion is that the longer I’m on LDN, the stronger this blocking is) so I went online to find out if marijuana is a narcotic (it only is in the eyes of the law). While researching this, I not only found out that marijuana is not a narcotic, I learned that benzodiazepines are. Which explains why so many of my meds have seemed so useless to me. I currently take the one my neuro prescribed for me a few weeks ago (but quit it the other night when I found this out - before my body got addicted to them, if it’s able to) and used to take another one that rarely seemed to affect me. And, it turns out, my sleeping pill, although not an official benzodiazepine, is in that “family” of drugs. Which JUST might be why I can take as many as 4 throughout the night, barely sleep at all, and not feel affected by them. So I just stopped those meds and I’ve actually slept a little better the past couple of nights. I’ll see how it goes, I may ask my doctor for a non-narcotic sleeping pill to try out. I haven’t told him yet that I’m smarter than him for doing my own research and finding out why the drugs he prescribes don’t do me any good. I suppose I should let him know my discovery.

The above was written yesterday. I received my StemEnhance today! I’ll let you know how it goes.

I’m having a weird week. My regular home care worker has been off sick, so I’m not getting any help until noon. And today they wanted to teach this fill-in (who is also my Saturday help and doesn’t know English well, which is okay for once/week, but any more than that and I would appreciate being able to communicate!) my Range of Motion exercises. Okay. Here is where I get frustrated with home care and the way they do things. A few weeks ago, they set up a time that my worker, the physiotherapist, and a supervisor could all be here at the same time. The reason for that was so the PT could make sure the exercises were being done properly, and so this supervisor could learn them properly as well, and teach another worker for times that Janice isn’t able to be here. So, since Janice is sick this week, they decide this is a good time to train someone else. That being the non-English speaking worker. And then, they send a supervisor that has NEVER BEEN HERE BEFORE. Why, oh why, do they make arrangements for a particular supervisor to be here with the PT, to learn everything properly, just to send someone else entirely?? Big Sigh.

Tomorrow Janice should be back and I will return to my regular schedule. Until Saturday, when I have to get up super early. Helen (the one that doesn’t know English well) can’t ever be here before noon, unless she comes to me before her first client. And since I may have lunch plans that day, I need to be dressed before noon. So I get 7:00 am.

May have lunch plans because the Good Lovelies are on tour and hit Calgary on Saturday. Caroline asked about meeting for lunch a couple weeks ago, but since they are in Edmonton the night before, I’m not sure what time they will be here or what the final plans are. I’m waiting to hear back from them. I may not be able to go to their show, because it is a house concert, and 99% of houses are not wheelchair accessible. I’m waiting to find out about that, too. I love their new album and REALLY want to see them live again, but I’m not getting my hopes up. I will settle for lunch or a visit that involves a bit of a private concert for me

Have I told you about my oatmeal discovery? No? Ohhhh, this is good. I have to credit Dietgirl with linking to it in one of her entries. I never made real oatmeal this past couple of years, because you need to cook it on the stove for about 20 minutes, and we all know I can’t exactly do that. And the instant stuff is crap without the health benefits. So, this is what I do now: before I go to bed, I put one half cup of my beloved steel cut oats in a bowl with about one cup of water. I place it in the fridge to soak overnight. In the morning, I toss the bowl in the microwave for 3 minutes, and voila! Hot cooked oatmeal that I don’t need to hang out by the stove to prepare. This has changed my life. I now get a BIG dose of nutrients in the morning. Not just the oats, but what I add to it - flax seeds, Hemp Hearts, and a nice organic mix of almonds, seeds and fruit. I also add a little pure maple syrup to sweeten, otherwise… gross. I don’t add any other liquid, I kinda like my oatmeal thick and chunky. I highly recommend this method of preparing oatmeal if you’re currently using the “it takes too long to cook” excuse not to get some hot oats into your tummy every morning. My grandpa would SO approve.

My life is so exciting. So much so, in fact, that I have started to Twitter about it.

Hi it’s me, your resident grasping-at-straws-willing-to-try-anything-human-guinea-pig. Someone left a comment in my blog the other day with a link to his MLM page to tell me about this stem cell product he sells. I deleted the comment because I don’t want my site used for people to sell their stuff; if I try something and like it, I’ll tell you about it myself! (5-HTP is awesome! Chi Machines are awesome!) I did check out his link briefly, but didn’t look any further.

The next day, my dad came over and told me about some scientific research he’d heard about and had started looking into online, reading some stuff and watching videos on You Tube. Something about something derived from AFA and something about stem cells from your bone marrow and some kind of supplement. I said “I bet it’s the same thing that guy commented about”. His deleted comment was over in my PC’s email deleted bin and I was on my MacBook, so I decided to just stay here and research for awhile.

The product is called StemEnhance by StemTech. The gist is “When you take two capsules of Stem Enhance, the ingredients help to support the release of stem cells from the bone marrow into the bloodstream. Through a natural process, those stem cells then travel to areas of the body where they are most needed.” I read everything I could find about it, positive and negative, including a Quackwatch type blog that portrayed it as a scam and left their comments open… where a ton of people taking the supplement jumped in and attacked the blogger. Their arguments were stronger and won me over, especially since the blog appears to be run by a bunch of med school students who will eventually become doctors who get paid to prescribe drugs, not supplements.

Anyway, I decided StemEnhance would be worth trying, and certainly cheaper than going to China. I found that guys’ deleted comment and link, and sure enough that was the product he was telling me about, so I ordered from him. I’m going to try it for at least a couple of months, and if I see any improvement you will certainly hear about it!

Speaking of more supplements I’m trying, I started taking this Serrapeptase supplement a few days ago. It’s being tried by a couple other MSers I know and is supposed to be a great anti-inflammatory. If you take the time to read that link, it does sound quite impressive. So far I can tell you I have less pain at night, in my hips and shoulder, so that is something. The past two nights I have only woken up 3-4 times (as opposed to 8-9) but I’m still too heavily medicated to be happy with that. I’m back on 2:00 a.m. sleeping pills so until I can get off those for GOOD I will not be happy. Still no marijuana to try; lots of “I can get you some” but none in my hands yet!

Eventually I will find the right mix of supplements that work for me and get off the addictive meds I’m on. I don’t need them to live so I’d like to find less chemical ways to relieve my problems, , and not destroy my body even more n the process.

Also, this makes up a lot of my credit card debt, so keep Suze Ormon away from me! She would SO deny me and I won’t let anyone deny me my chances to possibly live a better quality of life! I may live in a fantasy world, but in that world I will get out of debt one day.

The above was written yesterday. I am still super slow on this FrogPad. Since then, through a very fast Facebook hook-up and good timing, I’ve got myself a few “medicinal” brownies to try! Keep your fingers crossed that I sleep tonight.

Anyway, on to non-health related stuff. Like… The Bachelor. Of course I think what he did to Melissa sucks BALLS but I also know she is a grown woman and will get over it, in fact she’s already with someone else so there ya go. If Jason and Molly work out, it will be worth it. We all make mistakes, just not in front of 17 million people. If they break up within the year, then screw ‘em both. And now I’m sucked in for another season, because Jillian is my girl! Yay Alberta born Bachelorette, go get your man!

We are all cold and snowy here again so I’m stuck inside for at least a few more days. I didn’t go out for lunch the other day, my client-friend Ken brought it here instead. I still got my #50 Satay though, so it’s all good. On Wednesday Lisa came over with Starbucks and we chatted up a storm. Her daughter is going to be an Olympic gymnast one day, mark my words. Thursday was pretty much an all day home care day. Oh, I had my annual assessment and my nurse is really going to bat for me to try to get me a motorized wheelchair. She’s also writing the building owners about the cost of putting in automatic doors because it looks like a wheelchair accessible apartment won’t be available anytime soon, so I guess it is a cost the health region may cover if it’s not too high! I do know how old these buildings are, however, so I’m not getting my hopes up. The cost to re-wire for that kind of work in this complex is probably more than they’re willing to pay.

Last night I watched Seven Pounds. It was good, but for a movie with so much mystery surrounding it, was I supposed to know the entire story, and the exact ending, within the first three minutes? Because I did.

Today my mom, Bob and my brother were all here. They took care of me and did stuff as usual, and we ordered in Chinese food. They were also all here for my brownie delivery, so the questions and stories were flying. Poor guy didn’t stand a chance to get out of here in the 2 seconds I’m sure he’d timed it for. My family is more highly (no pun intended) versed in this area than I would have imagined.

Well, I am going to watch Desperate Housewives, eat my bedtime snack, and hope for a good night’s sleep. I’m tempted to eat one now to see if it helps the stiffness in my legs! But I’ll hold off on that for now. These are expensive brownies and sleep is my first concern!

This week I’m in taxes up to my ears, so I’ll see ya when I see ya!

Today was quite the productive day. I made it over to the mall (it’s beautiful outside today) and not only did I get to Walmart for cat food and oh-look-it’s-Easter-and-yummy-addictive-Robin’s-eggs-are-out, but I got to the bank and set up a new RRSP plan, AND I got passport photos done. They are FABULOUS! These are the pictures that will proudly be displayed on my “Most Wanted” poster.

Gangsta. So I am one step closer to accepting that dinner invitation to Rome. And for THAT I will wear make up. As a friend of mine said, when you’re on vacation and start to look like your passport photo, it’s time to go home!

By setting up another RRSP account I completed another thing on my 101 list. Yes, I do still look that over to find things I will be able to accomplish, but I also know there is no way in hell I’ll get even close to completing it. I will make a new, more realistic list, when this one expires. Maybe.

I also got myself some cream cheese and Triscuits, so I can go about enjoying the habanero jams I ordered from Crooked Acres. Robyn sent along some cat toys for Pita and Pepper that are stuffed with catnip, so I got to spend the evening laughing hysterically watching them play. Pita excited herself so much, she threw up. I swear I’m making a video of the kitties playing, and that will be in it. (The catnip toys, not the puking).

And the jam… ohhhh boy! Hot stuff. I think it may cure anything.

My brother is here right now and I am virtually ignoring him.

The next couple of days are busy for me, I actually have things to do, places to go! Tomorrow a client is taking me out for lunch to My Favourite Vietnamese Restaurant, and then my Home Care nurse is coming over for my annual Big Assessment. Then on Wednesday I’m having lunch with a friend from school, my friend Lisa; a different friend Lisa than I usually mention! (That Lisa, by the way, is planning her July wedding to Russ, my blog host!) Somewhere in there I need to get a whole lot of work done. Sigh. So much for the attempt at frequent blog updates.

Oh! The Bachelor finale starts in a few minutes. By the time you read this we will know if the rumour he proposes to Melissa and then dumps her for Molly during the “After the Final Rose” show is true. Gotta go!

I am Frogpadding this entire entry so it may take days. This is about the weirdest thing I’ve ever seen and I expect it will take awhile to learn. There are about 7 different letters/symbols/numbers etc. on each key and nothing is where you are used to. The most popular letters you just hit the key, the less popular you hold a thumb key and the letter key simultaneously, and for everything else you press a “symbol” or “number” key first. It’s going to take a lot of getting used to! I like it though; it’s a pretty cool gadget and well designed. “The” are the three keys smack dab in the middle.

I received a response to my inquiry from the stem cell place in China. They said that the most common outcome for progressive MS is some initial improvement and some symptoms are relieved, but soon the progression starts again. So it’s not like a cure is possible there, and I’m not so sure how worth it it is… although any improvement right now would be awesome. I guess if I had the money myself I would go in a heartbeat, and make it annual. Also if I was still relapsing/remitting I would find a way to go. But when I was RR I wouldn’t have considered it, because back then I never believed I would be in the shape I’m in now. I honestly thought I would beat MS. I still think I can, I’m just getting a little desperate for ways to.

I saw my doctor on Friday, and all my blood tests came back “normal”. No hormone imbalances, no sluggish thyroid to blame weight gain on, good cholesterol and blood sugar, Vitamin D is 87.1 ng/ml and normal is 45-70,so that’s good. I still think it needs to be higher, even though the doc was impressed. I have to go look up my MS and Vitamin D info I have on my other computer. I need to remember to take my supplements! Story of my life. So basically, I am in perfect health. HAHAHAHA. I guess blood tests only say so much…

I also talked to him about medicinal marijuana, and he made it sound like you have to jump through hoops to get it. There are a ton of forms to send in and you need to know exactly how much you need. And since I’m clueless about that stuff, I may have to do some experimenting on my own. I have never heard it is that hard to get a prescription, so I need to talk to some friends that I know have one and find out how they got theirs. Although, online Health Canada has a ton of application forms and you need to send in photos of you AND the person you’re buying it from (plus their police record) if you’re not growing your own. Sigh. I AM getting lots of tips and baking advice from (non-medicinal) Facebook users, however, so this may not be too difficult. Medicinal is certainly cheaper, however, so I would like to go that route with a prescription!

Okay, I know this is short, but I have been coming back to it over the course of several days and it’s just taking too long. I started it in February and I want it to END. I wonder if I’ll ever get faster on this Frogpad?