Archive for June 2008
My husband cracks me up, he does!
He and my brother-in-law, Jannie, were playing a game of boxing on Jannie and sister Sonja’s new Nintendo Wii set. It was hilarious watching the guys get so worked up, punching into thin air, inching closer to the tv set and working up quite a sweat. And dancing around and, in Michael’s case, leading with left foot and putting pressure on it. Therein lies a story…
He pounced on his poor foot so aggressively, trying to punch Jannie’s character’s lights out, that he ended up seriously hurting a ligament/ muscle in his foot. Even his big toe was swollen to twice the size of the other one. He’s been limping around ever since, and I’ve been administering sports massage.
So yesterday, he told me he had a wiinjury. It was bad enough for him to cancel Sunday’s round of golf, no less.
At first, I thought he was talking of a whinge-jury, i.e. an injury that one whinges about. (It would have fit the bill, all right). Then I realised that it was instead a witty hybrid of the words Wii and injury. Wiinjury!
For anyone wondering if Wii is worthy of the hype, this should go a long way towards convincing you. He got a sports injury from a video game! So if you want to get your kids (or husband) off the couch and at least getting a spot of exercise, Wii’s your man.
…and saved for a rainy day.
I am having a great day. Great in general, and certainly not hurt by the fact that I am reading the brand new novel from one of my ALL TIME favourite writers, Marian Keyes. That woman sure knows how to spin a yarn. Her new book is entitled This Charming Man. It’s a little different to her previous novels and took me a while to get into it. It deals with the sombre topic of domestic violence, which is mentally jarring, let’s face it. But as always, she writes with such wit and warmth that I find myself laughing uncontrollably at certain scenes. (She does not make fun of domestic violence, don’t get me wrong, but she has some great comic relief in the book). I have just finished a scene that left me weak from laughing. I don’t laugh out loud for books much, but I was guffawing away so much that I was battling to keep a grip on the book. The sound of my own laughter in the empty flat made me laugh even more; it was a total moment.
I’d describe the scene, but I couldn’t possibly do it justice, but if you’re into chick-lit with brains, get the book and leave me a comment after you’ve read the ‘trannie’ scene. I’m still wiping tears of laughter out of my eyes!
I phoned my sister and told her how I’m laughing my ass off at the book (she was the one that bought it). I said I don’t know what the neighbours must be thinking about me. She replied that they probably think that I’ve taken a lover.
Now that made me laugh even harder – the very idea!
My sister is very sweet to me. She knows I have a thing for Marian Keyes. So when she was at CNA earlier in the week, and saw that her new book was out, she bought it and gave it to me to read first. I remember when I was little, she bought me a My Little Pony out of her very first pay-check. And she’s still at it. I’m so lucky to be blessed with not one, not two, but three awesome sisters. My cup runneth over.
I’m in a bit of a sorry state at present.
It is nothing big, just a whole lot of little things that are conspiring to make me miserable.
Number 1: Last night I had the misfortune to develop a head cold. Not too bad, but not recommended, either. Lots of phlegm, not so lots of sleep. Sneezing my head off. Running nose (also Rudolph-like red in colour). Particularly not compatible with my neck pain. Which brings us to…
Number 2: My neck, while feeling incrementally better, I must admit, is not 100% yet. It is feeling on a par, maybe even worse, than it did prior to the visit to the chiropractor. I still have the tension headachey thing, ‘specially at night. Also very unpleasant muscle stiffness in my shoulder blades, which I suspect are also not aligned as well as they should be. WTF is going on here? One minute the whole set-up is fine, the next I have aches and pains all over the place and it’s not even like I had a wild night on the town to account for it.
Number 3: more pain, this time in my wrist. I have had this recurring problem since my teens that my wrist will go through a period of being very tender. I suspect that it’s a ligament that gets strained. It hasn’t troubled me for years, but of course it couldn’t miss jumping on the bandwagon in my time of need!
Number 4: A slight (but nonetheless disturbing, as always) case of optic neuritis. Probably about three flashing purple dots, at most, per day, which is no need for panic, but still unsettling, especially as I have been treating with my homeopathic ‘wonder drops’ for quite some time now.
Number 5: Electric buzzes up and down my leg in the mornings. Certainly spoils any lying-in I was planning on doing! It could be nothing, but then, it never is. Positive thoughts, positive thoughts…!
Number 6: Finding out that someone on the Fingolimod trials died, and another one is in a coma. I’d be lying if I said that it was really worrying or upsetting me, hence the low position on my list. But it’s not thrilling me either, though. Kind of highlights the fact that I am a guinea pig on trials and anything could happen, theoretically.
Number 7: Can’t go to the gym because of the head cold and the muscle pain.
Number 8: Still feeling bratty from suspected PMS and feel like picking a fight with someone and causing a spot of trouble. Hah!
That is all. But it’s enough for me to be feeling distinctly unperky.
I was a bit bratty yesterday on Father’s Day. The cause was a mixture of the gnawing pain in my neck and girly hormones run amok.
The day started off well enough. My sister and I arranged to meet our parents at a local coffee shop situated at a nursery to celebrate father’s day and make a bit of a fuss. That part was great and everyone seemed to enjoy it.
Michael was on the golf-course for the second day running, as it happened to be club champs. No problem there.
When he arrived home, he headed for the pc and started with some work. I was on the wings, complaining about my neck pain. Without looking up, he murmured, “Um, that’s nice.” I was not pleased. When I’m in a mood like I was in, I can be fairly high maintenance. Especially if I feel like I’m being ignored.
I tried to come up with a reason why I was owed something for it being father’s day, and failed. Instead, I ferreted out an old, dusty, rarely celebrated anniversary – the date when M officially asked me to be his girlfriend, eight years ago. I informed him of it, and he was not suitably impressed. I’m ashamed to admit that I lost it a bit at that point, and wished him a ‘Happy F***ing Anniversary!’ Not my finest hour.
Fortunately, he was all chilled out from the morning’s golf, and didn’t take me seriously at all.
I got a grip on myself, and we ended up having quite a nice evening. The truth is, I did enjoy father’s day. I am lucky enough to have two fathers in my life who are great role models. Michael and I come from good stock. We are blessed to have our fathers live so close to us that we could spend some time with them yesterday.
Today was Youth Day. Its history doesn’t mark South Africa’s finest hour. But at least we have come a long way since those dismal apartheid times.
I claimed dibs on Youth Day, because as I explained to Michael, I’m much younger than him (8.5 yrs to be exact). Practically a youth by comparison. Obviously I’m a delusional 28 yo, but I reckoned it was worth a shot, lol.
Youth Day was lovely. We spent it together, had a really nice lunch, watched a movie and even watched the last coupla hours of the US Open (golf tournament). I’m not known for being a sports watcher but it was absolutely riveting stuff to watch Tiger Woods snatch victory from underdog Rocco Mediate, who gave it a really good shot. Rocco was one shot ahead right up to the end. They ended up playing sudden death, with Woods demonstrating just exactly why it is that he is a living legend, and chalking up his 14th win at a major.
My neck is still pretty sore. I really don’t want to go back to the chiro’s for a repeat performance, but if it doesn’t improve soon, I might have to. I’m going to bed now, and with any luck it will feel better tomorrow.
“I’m not offended by all the dumb blonde jokes because I know I’m
not dumb… and I also know that I’m not blonde.”
– Dolly Parton
Yesterday was a fairly productive, if painful day. My neck has been out this week. At first it was just a shooting pain when I turned it in a certain direction, but it was getting worse and running down into my shoulder. Tried stalling a bit but soon realised I was due for a session at the chiropractor’s. I hate having my neck worked on, but seeing as the alternative is walking around in pain that is just getting worse, I went ahead and made the appointment.
The chiro’s rooms are about 40km away. I didn’t relish the though of driving myself, what with my wonky neck and all. Fortunately, it happens to be within spitting distance of the golf course that Michael wanted to map on his cellphone’s GPS program. So he agreed to take me, if I was prepared to wait for him while he was on the golf course.
While I was in the waiting room, something fantastic happened. The awful wart that I had on my finger flaked off. (This is the gross part – it fell onto the carpet, and I couldn’t find it. lol. A tiny little piece of shrivelled wart-skin, just waiting to be vaccumed up. That’s the most disgusting thing that I’ve done in a while).
Anyway, this wart has been growing for about two months. I know it was a wart because I get them from time to time and know exactly what they look like. I didn’t want to pay R300 for the skin-specialist to make smarmy remarks at my expense (how can I help you? Is it another wart? snigger) and burn it off with liquid nitrogen, which a) is painful for about a week afterwards, and b) is not always successful at removing the wart for good. Also c) I knew there were effective home-remedies.
I had one on my ear about 4 years ago. It was ugly and I had to wear my hair loose to hide it. I actually prefer wearing my hair up. I found a good website on wart-removal home-remedies, one of which was applying castor oil to the affected area (that would be the wart) on a daily basis until the wart is suffocated and dies. Apparently, a wart is caused, most commonly, by human papillomaviruses (HPVs) and people with suppressed immune systems are more susceptible. That made sense, because I never had a problem with warts as a child. Only after the whole MS debacle and subsequent use of immuno-suppressant drugs did I start getting them occasionally. I’ve had about three over the past nine years, which is not a huge amount, but I really don’t like it.
The castor oil technique worked like a bomb for the wart on my ear, but the one on my finger was just a tough old bugger of a wart and didn’t want to go away. So I searched the web again and this time happened on some sites that recommend apple cider vinegar for the job. Michael laughed at me, because I keep a bottle of apple cider vinegar in the fridge and use it to cure just about anything. He says it’s my snake-oil.
Here’s the thing though – it WORKED. All I did was soak a tiny piece of cotton wool with the vinegar, apply it to the wart, cover with a plaster and keep it on overnight. I did this for about 5 consecutive nights, and then it made a little scab and fell off. The skin is smooth and wart-free now, with just a tiny red hole (called a crater) where the root was. And that is healing up fast. Within a couple of days there will be no sign that a wart ever took up residence there. How cool is that?
Yes, so after I flicked off my wart onto the carpet in the waiting room (I feel bad about that, but at least it was a dead wart) I was called in to have my neck manhandled back into place. The chiropractor is completely charming, I really like him a lot. Very old-school and chivalrous, just as a gentleman should be. If he wasn’t nearly three times my age and if I wasn’t a bit in awe of him, I think I’d probably have a wee crush on him. Just because he’s so very good at what he does. I can say that, even though I’m in a lot of pain today, muscles protesting loudly at having been shoved about so roughly. I hardly slept last night. My whole bodt aches, I feel like I’ve been beaten up. Not that I’ve ever been beaten up, but I should imagine it’s a similar feeling.
Seeing as I was there, I asked the doc to pop in my troublesome SI joint, which was giving a bit of trouble (when is it ever not?!).
The thing about chiropractics, is that it’s very relaxing. But only up to a point. One minute you’re being massaged with one of those electric vibrating massagers and having vanilla oil rubbed onto your neck and then the next, your neck is making sound-effects that a neck should never make. Mine gave an almighty click, which pleased the chiro no end. Just as I was recovering from that, he made me lie face down on the bed. He says to breath in, and honestly one is most reluctant to do that, because you know on the exhale you’re gonna be crushed to the mattress from behind by your ribs. Sure enough, I got it between the shoulder-blades – another loud click. Then onto my side to have my hips crunched back into their sockets. And to think I pay for this, lol.
Normally, I only have one ‘site’ attended to at a time, but my reasoning was why pay for three separate appointments when I can have it all done in one? And of course with the cost of fuel that has sky-rocketed I can hardly afford to drive up and down all the time. End result is that I am in agony now with my whole body being stiff and sore. Ow. The day after is normally the worst, so I can look forward to it being better tomorrow. Until then, I’m fairly useless as every movement causes pain.
After that, we went to the golf-course so Michael could finish his mapping there. I stayed in the car and listened to music for an hour. I’m currently having a love affair with Chris Isaak’s song Two Hearts. Beautiful. Also Billy Joel’s And So It Goes. It was so warm and cosy in the car, and the music so lovely, that I nearly fell asleep. Were it not for the throbbing pain in my body (hah!), I may have. But as it is, I did have a total ‘moment’. I was parked next to a low wall, over which I had a view of a winter bare Pine tree and the sweetest little sparrow hopping about on the pine-cones. I took a deep breath (and winced) and then thought how very beautiful life can be if we allow it to.
Then we went home and I’ve been whinging about my neck ever since, lol.
I have been on the phase III trials for FTY720 (aka Fingolimod) since Feb 13 2007. That’s nearly 16 months to the day.
The easiest way for me to gauge the change in my condition is not, as might be expected, the clinical tests like my score on the EDSS. That has dropped, from a 5.5 to a 4, which is quite remarkable in itself. But most noticable has been the change in day to day activities.
I started swimming at our local gym a little over a year ago. I remember the first couple of weeks well. I had to bring my orthopedic walker along and park it next the pool. My legs were very weak from lack of exercise and it was only the strength in my arms that kept me going, initially. I could do 24 lengths, with a lot of resting in between. Those 24 lengths took me about an hour. Afterwards, my legs were like jelly and I battled to haul myself out of the pool. And when I say battled, I mean really battled. I would then grab my walker and painstakingly make my way to the girl’s locker room, get dressed and from there make my way out of the gym, leaning heavily on the walker. I remember one time I was trying to go too fast and next thing I knew, I was sprawled across the floor with people milling around to help me up.
This trend went on for quite a number of months, and was especially bad if the pool was heated past a certain point, or if I was having a relapse. I was starting to lose faith, because it seemed like I was fighting so hard to move forwards and gain a modicum of fitness but it just wasn’t happening.
After a gym session, in those early days, I would have extreme mobility fatigue, and just grew to accept the fact that on ‘gym days’ I would be pretty useless for the rest of the afternoon.
Fast forward to present day, after swimming three times a week for 13 months:
Today, I swam 48 lengths comfortably, virtually no resting in between. I haven’t used the walker at all since at least January, maybe even before. It doesn’t go to the gym with me anymore. After getting out the pool (with no hassles) I walked to the locker room without even holding on the railing, got dressed and walked out the gym with no problem. No mobility fatigue or ataxia. I then had a piping hot bath (huge no-no for me previously) and did get slight mobility fatigue, but not to the point where I couldn’t walk and it passed quickly.
If I look at it objectively like that, it really astounds me. I’m not even the same person I was a year ago! I pretty much blend in at the gym now.
My life in general is a lot easier. I can do things that I haven’t been able to in years. I can even use a skipping rope again, even though I can only manage 5 consecutive skips. It is still massive progress, as MS-ers are notorious for not being able to jump. (We’re like elephants 😉 )
When we go grocery shopping, I don’t get tired out after only navigating a few aisles. Nor am I contrained to hanging onto the shopping trolley for balance.
I’m not attributing all this purely to the Fingolimod, but I know it is playing a huge part. Obviously, the swimming itself is helping, as my legs are much stronger these days. I have recently noticed that I am able to push myself, to a degree, in the pool for a cardiovascular workout, where previously I had to stay well within my comfort zone, or else huge trouble. So I am getting fitter.
I am also being treated with Quantec therapy since July last year, which I believe is benefitting me quite significantly, too. The lines are a bit blurred as to what is helping me the most, but I was improving already before I started with the Quantec, while just on the fingolimod.
The fingolimod has not only reduced my relapses, but also taken the sting out of them. I can’t boast a 100% drop in relapse-rate like others on the trials, but what I can say, is that my MS has gone from being completely out of control, like a runaway train, to being manageable. At this stage, it is a huge, big deal in my life.
I wait with interest to see how I will be doing a year from now. I am so hugely grateful to be a part of these trials. I think these meds are going to make a big difference in a lot of people’s lives.