Can You Hear Me Now?

I decided to re-activate my blog one day before a FULL year had passed without writing something. You’re welcome.

This has been… without question… the worst year of my life. Especially the past few months. I don’t even know where to begin!! HOLY SHIT.

When I last left you, I had just hired Chrissy, and Thalia lived upstairs and all was well in the caregiver area. Now, Thalia has moved (waaaah! She still comes, but it’s NOT the same as having someone upstairs) and Chrissy left in May to spend the summer in Thailand and then move to Ontario. She was a GREAT asset this past year, but she’s gone. So, I hired this chick named Sherri who seemed very cool and although red flags popped up all over the place, I chose to ignore them because she actually worked great with me, and I’m an idiot. So I should not have been surprised when during one of my several recent hospital visits she texted me that she was stuck in BC because of the rain, and would let me know when she was on her way. I know one highway was closed for one night, but it wasn’t the only way out, and when I got home, couldn’t reach her by any of the numbers I had for her and she chose not to show up for work or call until 4 days had passed, I sorta knew that was over. Thankfully Thalia was able to cover for her. But when she finally called and acted like nothing was wrong, I informed her she was being replaced and her final cheque was in the mail. *shiver*

She has yet to be replaced… I’m waiting on a lady nearby I’m 99.9% sure I want to hire, but she needs another week or so. And since my hospital visits resulted in my being on an indwelling foley catheter for a few weeks instead of doing the in/out thing, I called Nancy and asked her if she could fill in for a couple weeks. Luckily she is able to. So Nancy is back for the time being.

My bladder and everything to do with it has been a living hell for the longest time now. Last year I started the in/out catheter thing several times/day so my bladder could be properly emptied. But I still got frequent UTIs and have been on and off every antibiotic known to man (yes, I take D-Mannose and natural stuff… more now than ever). After several visits to a uro-gynocologist and tests and whatever I needed to do, I finally went for Botox on May 9. Now, what Botox in patients with MS related neurogenic bladders is supposed to do, is relax your bladder so you don’t get the urge to pee constantly and your bladder is able to hold more before you feel the urge to go. In me, however, NOTHING EVER WORKS LIKE IT’S SUPPOSED TO, so I ended up with an antibiotic resistant UTI, a constant urge to pee and completely unable to, calling Thalia at 2:00 in the fucking morning to cath me because I had to go SO BAD and couldn’t, hospital visits, and finally now an indwelling catheter. At least the botox has relaxed my bladder enough that I can wear the catheter without getting painful spasms. I don’t know how long it will stay in… I actually want to keep it until the botox wears off and then get a permanent Supra-Pubic catheter put in (it goes right into your bladder via a surgery because a foley will be too painful then) because I GIVE UP. I HAVE HAD IT. My bladder has caused me too much pain, tears and exhaustion over the past couple of years. I’d rather be attached to a bag of pee. I don’t fucking care. It’s just too hard. Plus, with the catheter I’m able to drink more, and past supper, and try home remedies for UTIs I’ve read about, and my urine has never been so clear.

I could go on and on about my health. MS SUCKS. It’s a rotten battle you cannot win and fighting is so hard. I have gone from being able to walk up the hall and back to not even being able to do that in the past year. I stay in bed until home care comes in the morning (don’t even get me started on home care!!) and can get me out of bed and wheel me out here. I’ve gone from showering every day, to 3 times/week because it’s so hard, and I’m going through the paperwork process to get a lift installed in my bathroom to get me out of the shower. It is just too hard now… standing up is the HARDEST thing I do, and needing to do it after a shower without my leg brace on, when I’m cold and wet is near impossible. I’m sort of doing an up-pivot-into wheelchair thing from the shower bench with my home care worker’s help, but it’s getting harder and scarier every time. At bedtime I try to walk to my bed with my brace still on, but often I can’t do it and out comes the wheelchair.

I can’t get around my apartment AT ALL… I mean, it’s been a long time since I really could, but it wasn’t that long ago that I could still grab something from the fridge or cupboard if I HAD to. Like, if a chocolate craving hit and I knew I had Reese’s Peanut Butter cups on the freezer door. Now I can’t even do that… no secrets here.

I’m so fat. I can’t move, (although I still do Range of Motion with home care every morning and use my Chi Machine for 30 minutes every evening) so everything I eat sticks to me. And I’ve always had a weight problem. I don’t eat nearly as much crap as I used to, but I’m bigger than ever. God. I remember going through my 2010 receipts and seeing pizza, pizza, pizza, KFC, crap crap crap allll the time, when I was more independent and ordered in a lot. I can’t eat like that now… I mean, someone has to get the door and accept the delivery so I’d be ASHAMED and embarrassed to do that so often now (ever had food issues or an eating disorder? I know you get me). I’ve had the same chocolate bars in my freezer for months ’cause I’m afraid to ask for one. I can’t get them, and I know my caregivers would give them to me, because who the Fuck can say no to someone in my position, but goddammit. My life sucks so bad that eating crap is one of the few joys I have left. But being this fat when moving is so damn hard isn’t good, either. Having food issues and believing eating crap is a “joy” is only one of my problems, and I’ve had it longer than MS, but ohhhhh how it complicates things now.

I WANT A DO OVER.

I’m going to just upload this. I’m too tired to keep typing. Still one-handed, still no Frogpad’s being made for people like me. I still have my gorgeous kitties Pita and Pepper and will upload photos next time. My lovely friend Emma was in town last month and I got to see her, too. And Peter Katz. And my Polyboys. It’s not like there hasn’t been ANY good this past year. My brother even got married! But today was about just SOME of the bad and I need an outlet. So I need to get this blog up and running again. TTYL.

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

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

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

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

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

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

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

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

Have you seen this yet??

Awesome. All support is appreciated.

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

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

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

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

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

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

My blog was down for a few days. Sorry about that, but it’s out of my control.

I am home. I am so very happy to be here. At this point my walking isn’t much better than before I left, and I still struggle to do every little thing, but now that I’ve spent some time on the other side I know I prefer this to that. Not that actual assisted living would be the same as that care facility, (there should be coherent people people around, for one thing) but it’s close enough for me to know I want to stay clear of that for a loooooong time! I pee’d for two days straight, deflating all that sodium from the food out of me. I had puffed up like a balloon, more than just my feet! I didn’t realize how bad it was until Thursday when I pee’d every 20 minutes. And the food would be like that everywhere. And the shower situation. And the giving up my kitties situation. And the lack of privacy situation. I’d much rather struggle here!

It’s nice to have peace and quiet again, and my kitties around, and my chi machine and my bed. I missed my lift chair so much. And fresh fruit, real food, my MacBook, my TV shows (I’ll be catching up for awhile and I even deleted a lot of them!) and so many other things I took for granted. I will be stuck at home a lot again, but I won’t complain about that anymore! I still hope to get stronger and more independent in that area anyway, but in the meantime I have Home Care sending me a lady to help me get out to the mall once/week. I’ll be able to get some shopping done and get a latte and stuff, and someone with me to help me get stuff down off shelves, help me off my scooter when we get back here, put everything away and help set me back up all comfy in my chair. No fear of falling. The increased home care services are helpful, as someone pops in during the evening, as well. I get a lady every morning for personal care, range of motion and lunch prep, and then again at night to help me get ready for bed, refill my water bottle, wash dinner dishes etc. It only takes about 10 minutes but it’s great to have that help.

I won’t even complain that they’ve been sending different people every day and retraining people constantly is draining and frustrating. Hopefully they will get it down to splitting the work between two or three people on a regular schedule so I know who’s coming and when!

It seems a new symptom has reared it’s very ugly head, called VERTIGO. It’s making me crazy! It started yesterday afternoon, when I sat up from using my chi machine. Now it happens every time I get up or down, and sometimes while I’m just sitting here. It’s going to make me sick! I’m getting nauseous. I’ve certainly been living with dizziness for years, but this is more than that! Wow. I certainly hope it’s temporary. I won’t be putting up with this for long… puke.

The above was written several days ago, but this vertigo has set in something awful, so I need to take another break until this clears up. I can’t focus on anything so even typing this is making me feel sick! I’m going to my chiropractor today for a neck adjustment and advice. My doctor is away, so I may need to head to the walk-in clinic tomorrow. I want to get a referral to a radiologist… one of the causes of vertigo is a blockage in the veins, causing interrupted blood flow and oxygen to the brain. So if I can use this vertigo as an excuse to be tested for CCSVI, that would be great! Alberta Health Services has made an announcement that they will not pay for people to be tested. But if I have blocked veins I have a right to know and be treated for it! Grrr.

I need to VENT, oh my God.

Remember in the past I mentioned I had a neighbour with MS named Richard, who moved out because he didn’t feel safe? No? Well, I did. And in his place moved in a lady I will call “Cindy”. Cindy is in a wheelchair, and I see her out my window almost every day wheeling herself to UnNamed Department Store where she works. I have learned through our brief encounters in the hallway or at the mall that she has cerebral palsy and a boyfriend named Nathan. Every time I see her on that wheelchair pushing herself to work I think “man, that woman has so much courage” and “she needs a power chair”. I mentioned that to her one day, and she told me she was applying for a power chair through Easter Seals. She just needed “one more name” to put down as a contact. This was my first hint that she doesn’t have a lot of support in her life, and of course I gave her my name and number to put down as a contact.

I asked her if she got any home care. She said no. I asked her if she had a proper walker (she can walk a tiny bit, and you can’t be 100% wheelchair bound in these apartments anyway because of the kitchens and bathrooms sizes, so I knew she must use a walker). She said she has a crappy one that breaks when she puts a lot of weight on it. She has no feeling in her legs and feet from the knees down, so it’s safe to say she needs to put weight on it. I told her about home care and to get registered with them, but didn’t take it any further than that at the time.

Yesterday I bumped into Nathan as he was leaving Cindy’s apartment with a bag of garbage. “Just taking out the garbage. Cindy needs a lot of help”. I said “she really needs to look into getting home care!” He said “oh, she can’t afford that.” I gulped. “It’s FREE! I get someone every day!” He looked dumbfounded. So today, while I was going for my little walk up and down the hall with my home care worker, Cindy came out to check her mail. I asked her to please come over and see me if she had time, and since she didn’t start work until 3:00, she came right over.

After talking with her for awhile, I learned that she not only has CP, but suffered a stroke 5 years ago which resulted in a 3 month hospital stay and some permanent disability. Her father committed suicide 15 years ago. Her mother and brother are here, but it doesn’t sound like she sees them much. “They hate Nathan”. I asked about Nathan… how they met, how long they’d been together, and her responses made me ill. For starters, he won’t help her with anything unless she pays him. He’s skitzophrenic. They met about 10 years ago in a food court at a mall. Nathan was there with his girlfriend at the time, also in a wheelchair. He walked up to Cindy, told her she was beautiful, and that he’d like to buy her dinner (in the food court! In front of his girlfriend! SCORE!) Cindy asked “what about your girlfriend?” and he said “oh, she can just take a Handi-Bus home”. Seriously! I was all… “uh… Cindy? Would that not be a sign that he would not be a good boyfriend?” I think she knows, but feels kinda stuck. He takes her grocery shopping and stuff. (As long as he’s paid). I asked her if she ever felt unsafe with him? Oh, yes. She used to live with him but moved out because he was violent. At least she had the smarts/guts to do that, but she can’t seem to get rid of him completely. She relies on the little help he gives her (for pay).

I picked up the phone and called my Home Care nurse to get the main home care number for new registrants. I spent the next hour on the phone with various intake workers and nurses, giving them Cindy’s info. I learned (because I was going between asking Cindy questions and telling the nurse) that Cindy can’t get herself in and out of her bathtub, and can’t even take a shower (she has a bath bench for showering) because she can’t afford the shower curtain and hand held shower head she needs to take one. FUCK. Seriously? She can’t even afford a fucking shower curtain, yet dickhead takes her money? Guess what I’ll be buying for her next time I get to the mall. She struggles to clean and dress herself, which is all you need to apply for home care. They are sending out an occupational therapist next week to assess her. She should be able to get a decent walker, poles, railings in the tub and other equipment she may need to help her in her home. As well as someone to help with bathing and dressing on a regular basis. I also hope they help her get a power chair… she would sure use it more than I use mine. And I’m pretty sure Easter Seals won’t buy her one unless she has first been turned down by the government. And she hasn’t even gone that route yet.

But that’s a conversation for another day. I will help her write a Client Impact Statement for her application. I’m her self-proclaimed Advocate, now. I can’t make her break up with Nathan, but hopefully I have steered her in a direction that she may not need to rely on him as much and will tell him to leave on her own. Fingers crossed.

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!

I started this entry, as usual, a few days ago, and originally opened it with bitching about the Michael Jackson coverage on every channel (the useless stupid stuff like all the things he had in common with Madonna and interviewing Bubbles) but since his memorial the other day, it didn’t seem right to open that way. Did you watch the memorial? It was truly beautiful and moving. I was teary, but managed to keep from bawling, until they showed his kids and Paris spoke about her daddy. Then I totally lost it. And now I can’t watch anything about it without bawling. I guess, like most people, I’m choosing to remember the good stuff. The star that shone so bright that night at the Motown 25th Anniversary that I was lucky enough to see back in 1983. I is old.

So, I went to the orthotic place to get my ankle/foot orthotic brace thingy adjusted. She changed the velcro straps around, but the bottom line is I still need someone to help me put it on. I’m not able to move my right foot and jiggle it around/push it into a shoe so I need help. That’s fine, all home care workers that have ever seen the AFO have asked me if I need them to help me put it on, so I figure they’re prepared for that. I’ll get it put on after I’m dressed and wear it for at least a few hours every day around the apartment.

The next day, Tuesday, I had Janice put it on me after exercises. It was a bit of a struggle, but we got it on and I wore it all day. I could definitely feel a difference, walking was better, even getting up from the chair at my desk was easier for some reason. It seems to keep my leg from stiffening up or something. Even after I took it off, I could notice I walked better that night. It’s like it trains your foot to stay straight and not drop! I was pretty excited.

I called my Home Care nurse/coordinator Gail to let her know I needed the “help put on AFO” added to my “care plan” (every little thing the caregivers do needs to be written in your care plan and they’re supposed to tick it off in your book every time they come; the Health Region loves paperwork). She said no problem, she’d call the Vendor (company who sends me Janice and the others, it’s all so complicated) and let them know.

A few minutes later my phone rang. It was Gail, with a biiiiiig sigh. “They have to send out a supervisor and an O/T”. WHAT? “To make sure it’s being done properly”. Are you kidding me? How do you do it WRONG? It’s either on, or it’s not. Gail agreed, and said she got quite snarky with them about all their “procedures”, and that I had worn the AFO that day with Janice’s help already. This is so fucking ridiculous, it should just fall under “dressing”, like putting on shoes does. It’s no different than putting on a shoe with more force than usual. Like Gail said, “they all know how to do it, they have lots of clients with AFO’s”. Half the Health Region is on holidays and who knows when an O/T and a supervisor will be able to be here at the same time as Janice. And what about when it’s not Janice? Saturdays? Holidays? I’m pissed. And Janice was told not to put it on me again until a supervisor and O/T come out, so I haven’t worn it since that one day. &@*{?!@?!!!!

Speaking of my O/T, he is really pissing me off. He’s the one that showed up that day unannounced and I heard tell the wheelchair rep that he KNOWS he called me and my MS must be affecting my mind. He is an arrogant, high on power ass, like it seems a lot of them in his position are, but I have been tolerating him because I rely on him. I only hope I have another option. Because I spoke to him the other day about the delivery of my power chair (a few weeks yet) and while I had him on the phone I asked him about setting up an assessment for self-managed care once I’ve had the chair for a bit, and see how that helps my independence. He spoke to me in such a condescending manner, like I’m a complete tool, and even laughed at me a couple times, that there is no way in hell I’ll be getting him to do that assessment. I really hope they can send me a different O/T for that because I am ready to file a formal letter of complaint against this asshole. I’d like to know his IQ because I’m pretty sure mine is higher and I’d like to rub that in his smug, self-righteous little face.

That was the part I started the other day. My life is so exciting, isn’t it? I’m understanding why Olivia Newton-John said (with regards to her cancer) to have someone else deal with the “stuff” so you can focus on healing. If only it was that simple.

My home care coordinator called me yesterday to find out if I had heard from my O/T about coming over for my AFO. I told her no, and while I had her, I mentioned my frustrations with that O/T and that I wanted someone else to do my self-managed care assessment. She said “I’m going to have to say something, because you are not the first person to complain about him.” What she failed to tell me, however, is that it appears I am the first person to officially request another O/T because of his attitude. This led to a meeting between my coordinator, the O/T, and a clinical supervisor in which they discussed MY complaints (no one else’s, which pisses me off, because now I have been singled out and the O/T knows I complained about him) and I need to meet with all three of them to “come to an understanding”. I guess there isn’t another O/T for this area to refer me to, so I need to air out my concerns with everyone and the O/T “needs to understand how he comes across” (as a condescending prick). I don’t know when this meeting will take place, but I need to get my thoughts organized. I want an O/T who will be supportive and helpful, not make me feel guilty for needing equipment and assistance. Like this guy does. I need to make a list of my grievances and be ready. My home care worker said today that she has other clients that hate him, but never say anything because they are afraid of how he will retaliate. So I get to do it. Oh, lucky me.

I also found out today from the wheelchair place that I don’t even go in for a seat fitting until August 17, so it looks like I won’t get my power chair until around that time. Bummer.

It is a couple days later now. I really need someone to deal with the “stuff”, this is exhausting and as you can see, takes over my life. Didn’t I used to talk about other things?

This morning when Janice was here, my O/T, Gail and a supervisor all came over to see how much work it is to put on my AFO. It took all of two minutes and it was agreed that it was a waste of time for all, but rules are rules. So now I can wear my AFO every day.

After Janice and her supervisor left, it was just me, Gail and my O/T to have our little “meeting”. The clinical supervisor that was also supposed to be included couldn’t make it. Nothing much was resolved; I sort of came to the conclusion that the O/T is the way he is, very by-the-book/black and white and not as much there to help the client as he is to make sure all his T’s are crossed. He didn’t understand what I meant by calling him “condescending” so I told him if he ever did or said anything to offend me or piss me off in the future I would be sure to tell him directly. We talked enough so that Gail called me later and said “I know what you mean about him.” I expressed my concern again that when I get my self-managed care assessment, he is not the type that will be supportive and helpful because he is not the least bit lenient or pro-client. She told me she would be my advocate and would help me with that when the time comes. So I told her she sure as hell better not leave her position, EVER.

Oh, also when Gail was here she commented that I seem to be moving a lot better. I held up my bottle of StemEnhance, which I believe to be one reason why. But again, I’m not saying too much until the 4 month mark and I’m only half way there.

Well, my next entry should have some more life to it. Lately, the above HAS been my life, so not a lot of fun for me. However, tonight I am going out, Saturday is Russ and Lisa’s wedding, lunch with another friend Lisa next week, going to the Calgary Folk Music Festival as a guest of the fabulously wonderful Good Lovelies, and some hopefully interesting stuff to talk about.

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.

This is just a quick update to ease the minds of those worried I may be making myself worse by taking StemEnhance. I had a nice long chat with a health and wellness coach on Monday. She is a holistic health practitioner and has been doing that for 24 years, only about two years with Stemtech. (Her story - brain injury in 2000, doctors told her if her brain didn’t recover in two years it never would. She started StemEnhance in Sept. 2007 and within weeks was remembering phone numbers and stuff. Whatever glitch in her brain that made it impossible to type double letter words - better was beter, hello was helo - went away as well and today she has no sign of ever having a brain injury). Today she works mostly with cancer patients and people like me who have questions/concerns about StemEnhance. Anyway, she told me I’m taking too much and to cut back to 8 or 10 a day. She was spot on with how I am feeling right now and what my BMs look like. “You aren’t even absorbing it all and you’re pooping it out. That’s expensive poop! You’re detoxing so much you’re not giving your body a chance to have a ‘good’ day.” She said she knows the man I talked to, who said I should be taking 2 capsules every 2 hours, and agreed that yes, indeed, his daughter’s story is remarkable, but even she didn’t see results for about 4 months. Also, my body is different than hers, and judging by my situation she figures I’m taking too much and being too hard on my body (I have had pretty fierce detox symptoms lately, such as increased dizziness, blotchy rashes coming out on my chest). She also suggested, as a natural health practitioner not as a Stemtech rep, that I get on a good collagen/MSM supplement and plenty of fish oil (or eat a lot of fatty fish, which ain’t gonna happen). “You do that, and decrease your StemEnhance to 8-10 a day, I think you will have a very different story in a few months”.

She also eased any concerns I had that I’m making unhealthy stem cells and therefore making myself worse by enhancing them. “You may have unhealthy cells, but they are not your stem cells. If you were making unhealthy stem cells, your body would have completely broken down years ago.” She works with and talks to so many people taking StemEnhance and only knows stories of improvement and recovery. We talked a bit about Deepak Chopra and “happy molecules”. She agreed that belief and thoughts play a huge role as well. “However the real miracle is, God created bodies that are able to heal themselves. He also provided us with substances available from the earth to assist in this process.” (StemEnhance is Aphanazomenon Flos-Aquae, or AFA, found in Klamath Lake, Oregon).

So anyway, bottom line is, I’m not going off StemEnhance any time soon and am even more hopeful than I was when started. I also went out and picked up some collagen & MSM supplements yesterday (already have fish oil ones). I’m already less dizzy today than I was on Monday, since cutting back my dosage. Onwards!

P.S. if you are on Twitter, are you following the #IranElection? We are so lucky to live in Canada and America. There is lots of info and links on Twitter, but beware of propaganda, false reports and Twitter accounts set up by the Iran Government to spread false reports. If you read enough it’s easy to tell who is reliable. My prayers are with all in Iran, I wish you FREEDOM and democracy. Sign the Amnesty International Petition!

WANTED: freedom for Iran, sunshine, and toys.