Can You Hear Me Now?

The family (all of them - this now includes my mom, Bob my Stepdad, my Dad, my brother and his girlfriend) were all here a couple weeks ago for Thanksgiving dinner. They brought the food, of course, and the plan was to use my oven to cook and my kitchen to prepare and serve. Do these things ever work out as planned? My kitchen is not set up for food preparation because I’m not able to do it. Counter space is very limited because I need to keep the things I use the most in easy reach. There is no room for even two people to move around. The oven decided to conk out in the middle of everything. So the food ended up being served in scattered order, while we waited for the main dish to cook and microwaved what we could.

All in all, it worked out and we ate lots and there was pumpkin pie. I called the office about my oven, then two days later my dad used it (we are on a regular rotation of baking me kale chips -yum) and it worked fine. When maintenance came to look at it they found nothing wrong. And it’s been working fine ever since. Weird… but I’m happy I get my kale chips every time my dad comes over! I’ve got two huge bunches of organic kale in the fridge right now, waiting to be washed, chopped and baked. I never knew it was possible to love healthy greens so much. I highly recommend them.

I’m super, super, super excited to announce after years of hoping and wishing, I will be getting back into a swimming pool TOMORROW. Finally! I worked out a schedule with my dad to get me there and back twice/week and Home Care was able to find a caregiver that can meet me there and help me in the change room. I did go to that appointment with a physiotherapist on the 19th, but we decided their program is not right for me (and they don’t have access to an NMES machine). I’ve decided to do the pool on Mondays and Wednesdays, and apparently I can still see the P/T I was seeing a few months ago, so I’m gong to try to set up a standing Friday appointment with him. I can do only once/week there as long as I’m doing water exercises a couple other days. I’m hoping this will all help me lose weight/get stronger so I can get some independence back. I’ve lost so much recently.

My friend Shawna helped me get out yesterday with my power chair and we took a Handi-bus on a little excursion downtown! I haven’t been there in years, but it’s all a huge construction zone right now so I’m not really interested in going again for at least another year. My chair is a MUCH better ride on the Handi-bus. What a difference from my scooter. I didn’t scream or feel unsafe once! With it being colder and all, I’m not able to get myself out the door as I need help with my coat and stuff. Again, I’m hoping the pool will help my independence because not being able to come and go from my apartment without help puts a damper on my entire LIFE. I actually have a call in to a social worker to discuss my options for assisted living centres/retirement homes (that take youngsters like me). I’ve been checking out some places that have websites, and they sound a lot like Carewest Glenmore Park (see my “Wristomania” section for my adventures in that place) except obviously more private because you have your own living space. I do think I would have a better life in one of those places right now, but of course I’d rather get stronger, more independent, and stay where I am. Or move to a newer apartment with laminate floors, fresh counters, cupboards and appliances, and automatic doors! And an indoor pool, can’t forget that. I want, I want, I want.

I know something’s not right in my world when over in my “category” list my Health posts far outweigh my Music posts. Sigh.

I was starting to work on another 101 List but I’ve already completed a couple of them (taking an excursion downtown with my power chair, finding a way to get back in the pool). I may keep those on the list anyway and be able to start it by crossing off a couple of things. I’m not so sure about making another list though, or if I should just write a basic Bucket List. Or NO list. I only completed 54% of my last list, mostly due to not having the independence to get out there and get the stuff done, and hoping for big dreams like “walking to Walmart and back” again. Oh well, I guess it’s good to have big goals and dreams. I just feel like a failure when I don’t accomplish them. Like “lose the excess weight” has been a goal for… HOW many years, now? Since I was… 10? And not even fat? Sigh.

Oh speaking of walking, my least favourite slogan in life is the one being used by the Weekend to End Breast Cancer walks/events in Canada: “Breast cancer is hard. Walking isn’t”. I’m really flabbergasted that an organization like that would use such an insensitive slogan that is offensive to the thousands of people with diseases, injuries, arthritis, etc. who struggle to take just one step if they are able to at all. I recently found out I am not alone in this thinking, as a friend of mine made the website Walking Is Hard and even got some press coverage for it. Way to go Allie!

That was written yesterday. Then my dad showed up and we went for lunch and there was a ton of Monty Python anniversary stuff on TV so I never got to finish!

So TODAY I’m off to the pool. Very soon. I’ve got butterflies in my stomach I’m so excited.

I made another call this morning and finally registered with Meals on Wheels. Something I should have done ages ago, but kept putting it off because I’m a fairly picky eater (don’t like mushrooms, most seafood, little stuff like that which obviously they can’t cater to) and from what I heard from all the seniors at Carewest the food is “gross” and “boring”. So I registered for standard meal service (lunch and hot dinner) 3 days/week. If I HATE it I can stop it. But I think it will be better than the way I feed myself most of the time now, and it’s cheap, and I requested the gluten free diet which will cut out the baked goods/desserts and be gentle on my system which acts up once in awhile from wheat-y stuff. She also said they’d cut up my food for me when I mentioned I only have use of one hand! I won’t get local/organic foods out of them but I have to take what I can get, right? I can still place my orders with Spud for snacks and replace MoW apples with my organic ones.

I’m still on Twitter, but I keep changing who I follow. I discovered, *newsflash*, that a lot of beautiful/famous people are boring as hell and can’t spell, and all the “your” instead of “you’re” gets on my nerves after awhile, (and no, it’s not that they’re trying to keep it under 140 characters) so I stopped following a bunch. Including the guy I mentioned a few entries ago. I still follow every writer from The Office I can find. Oh, and Christina Applegate is NOT one of the stupid beautiful people. LOVE her. I unfollowed people I also have on Facebook who use software to update both statuses at the same time, too many repeats. Except Rob Szabo and Peter Katz, I don’t have the heart to unfollow them. I try to keep my following list around 100 but there are so many updates it’s hard to keep up. And if Louise Hay tweets something meaningful it gets lost in a sea of funny stuff and doesn’t really register. Sometimes I do wish I had stuck to my “I WILL NEVER TWITTER!” declaration.

But I also like seeing “I’ll be on Leno (Letterman, Kimmel, Conan, Fallon, Ferguson, name your talk show) tonight” so I know what to set my PVR for!

Oh I know, it’s been forever n’ ever. Typing is a pain and I’d rather plunk out a few letters on a Facebook comment or Twitter from my iPod Touch! But I did buy this laptop as not only a place to surf the web and talk on Skype, but to WRITE MORE so I best get on that, even if I am still slow as molasses on this here Frogpad. It’s sooooo easy to make mistakes on that thing I’m constantly backspacing (which I’ll also make mistakes doing and end up typing numbers or something instead) so it takes me forever to do anything. Although I guess I won’t get better on it if I don’t practice more often, right? So enough with the excuses and on with the entry.

Summer is over. And I didn’t blog about it at all! And I’m just not going to because the thought of going over every detail of my life for the past few months is one of the reasons I haven’t updated. So overwhelming! So I guess I’ll be missing a few months of my life from here. No biggie, since I’m pretty sure I didn’t do much. Popped in to a couple music festivals, saw some friends, got my power wheelchair, enjoyed some Indian food, got excited that they opened up a Tim Hortons in my mall (and had my fill of iced coffees), complained about my stupid hair and the fact that I am trapped in my apartment most of the time and getting tired of it. Yes, I do realize I have both a scooter and a power wheelchair and should be able to go out whenever I feel like it. Unfortunately it’s not working that way, as I need so much help now I can’t even explain it. I feel like I have lost all my independence and I get really sad when I think about it, so let’s move on, shall we? Or I won’t be able to see through the tears to type.

Speaking of crying, did y’all watch Jim and Pam’s wedding episode of The Office last week? Gaaaaah I bawled. Sorry if that’s a spoiler for those of you in other countries who are behind by a couple of years. Yes, Jim and Pam do get married. And it is awesome.

I did attend a pretty amazing lecture last week by a woman (a doctor, actually) with secondary progressive MS (like me) who was in a wheelchair most of the time (like me) and managed to reverse it and get back on her bike again (unlike me!) She did it by using an MNES machine (on high power for MANY hours/day) and a strict diet/supplements routine. Her name is Dr. Terry Wahls. Her website is HERE, you can find her lectures on You Tube I believe, and the one I attended last week will be up on the Direct-MS website within the next few weeks, from what I hear.

Yes, this gives me hope, but I also know it’s not as simple as just eating 6 cups of kale a day and hooking myself up to an NMES machine. Dr. Wahls is a medical doctor, and had access to a physiotheraist down the hall who could help her learn how to use the machine. You can’t just buy one and start using it, it’s a little more intense than a TENS machine. So right now my focus is to find a physiotherapist willing to help me before I invest in the machine. I have an appointment with one on the 19th. Unfortunately, those machines have not been approved for MS, (although I don’t know WHY, hello?

“NMES can be used for a variety of reasons including increasing blood circulations to the muscle, relaxing muscle spasms, prevention of muscle atrophy in patients unable to use parts of their body, prevention of venous thrombosis after surgery, and increasing range of motion.”

Does that not sound like me, HELLO?) because MS is not a muscle disease and NMES does not fix the nerve signal from the brain to reach the muscle and tell it to move. But, but but BUT, I truly believe that if my muscles get stronger I will be able to move them more, and REPAIR that signal through the process of movement. Unfortunately for me and others who believe this, the doctors in the MS system don’t believe we can get better and “the system isn’t set up for you to improve” (direct quote from the physiatrist I saw on Tuesday). it’s set up to rehabilitate someone with a deficiency they believe can be fixed (i.e. if you are in a car accident and unable to walk without intensive rehab, stuff like that), but those of us with progressive MS are left on our own if we want to IMPROVE. We get Range of Motion stretching (like I get from Home Care 4 times/week) for the purpose of maintaining, but nothing to strengthen. This is the same physiotrist who referred me for physio because he believed a lot of my disability the past few years was due to being laid up after breaking my wrist, bad surgery experiences, depression, weight gain, etc. and not just MS, so there was hope I could IMPROVE, and now he’s saying I’m on my own again. I complained to him that all that physio I was supposed to get turned into once/week or every two weeks, and I need to be using that Nu-Step machine several times/week if I want to get stronger. That’s when he told me the system isn’t set up for that. So… I’m on my own again. Sigh.

So, I have that appointment on the 19th and the hope is that I will start their exercise program twice/week, the catch being they will need to get a walker for me to use at the facility as I won’t be able to bring mine, and I’ll need to book a Home Care worker to meet me there as a companion/helper/limb lifter. Also, fingers crossed the P/T will be willing to assist me in my NMES desires. There is also an exercise class for people with disabilities at the University that I will look into. It’s costly and I don’t know if it’s suitable, but hopefully they’ll let me check it out as an observer before I pay any money. And I STILL haven’t been to a pool and fear I won’t until I can hire my own one-on-one caregiver, whenever the hell THAT will happen.

I did not intend for this entry to turn into a long rant about… whatever this is about. Now I’m too tired to write about anything else! Oh - for those wondering - I am still taking StemEnhance. For about five minutes I thought it was doing something when my right eye stopped moving around in all sorts of weird directions and I got all excited, but no improvements since then. I do think it helped my eye, though, and I am not giving up all hope that I may see something else improve in the future. I always try to stay hopeful, but MAN life would be easier if I weighed 110 pounds and had lots of $$. I’ve been back on Weight Watchers for 3 months and have only lost 13 pounds (and don’t try to tell me 13 pounds is a lot, at my size I should have lost that the first 2-3 weeks). You know WHY? Because I’m not eating ENOUGH. It’s so hard for me to get myself food that I don’t do it often enough. Crikey. I’ve got to make some serious calls for help next week. Just reading this over I can see how pathetic it all is!