MaggsBunny

New address

2009-08-15T18:47:00.002+02:00

Phew, haven't posted here in YEARS! Just happened by now when I left a comment for another Blogspotter.

I never did leave a forwarding address, as I had problems posting anything, hence the move to wordpress.

But here is my not-so-new cyber address:

www.maggsbunny.wordpress.com

Hectic Day!

2007-01-16T21:56:00.000+02:00

What a day!

Yesterday was quite nice. Went to town a bit, and generally felt quite good. Didn't get to swim, though. We did go down the road to get a squizz at McNaught's Comet at twilight. Unfortunately there was a bit of, shall we say, marital misunderstanding on the way. I felt upset enough to have a sudden onslaught of exacerbated ms-symptoms, and suddenly had no interest in seeing the bloody comet. Couldn't spot the damn thing, anyway, so it was just as well.

Today, we left for Jo'burg just after 7:00. Got to the clinic just in time for my appointment. Wasted a whole lot of energy galloping around the parking-lot, but eventually we found the right place.
The neurologist is a real sweetie. I like him a lot, and feel comfortable around him, which is more than I can say about some other neurologists. We discussed the trials for a while, and I had to sign the consent forms. Lots of paperwork. They even have to do a HIV test, as that is something that may intefere with the trials of an immune system disease.
Then the (many) tests commenced.
At least the doc has no doubt that I have relapsing-remitting ms, which is good news. Both for the trials and for me, personally.
Then they did an ECG, to test my heart, which is normal. Had to lift my shirt so he could attach a whole lot of little electrode thingies to my chest *blush*. I must be getting older though because this didn't bother me much. In fact, I was quite pleased by how my bare stomach looked. As well it should, after two weeks of dedicated swimming. Anyway, heart was fine.
Then he looked into my eyes, and said my poor optic nerve is very pale. It's supposed to be a healthy red. Still, no surprises there.
Then he drew four vials of blood. Once again, my veins were perky and did me proud.

Then a colleague of my new neuro was called in to run the disability tests. Can't remember the acronym.
I tell you, I was performing like a seal. Doing my very best.
First I had to put nine little wooden rods into a wooden block with nine corresponding holes in it. First with the right hand then with the left. It went okay. Frankly, much easier than buttoning my shirt or putting my earrings on.
Then I had to do the cognitive ability test. They need a baseline to compare future tests with, while on the trials, to see if there is deterioration or improvement. Fortunately, I don't have cognitive troubles. Very thankful for that.
Anyway, he introduced the test by saying, "This is hard". Immediately, I felt stressed. I know I don't have cognitive dysfunction, but these guys didn't.
The test simultaneously tests mental arithmetic and memory. He plays a cd, where a voice gives you a list of numbers to add up. But there's a twist. After you've added the first two digits, and given the answer, the voice repeats another number, and you have to remember what the second number of the previous sum was, and add that to the new one. And so on. You get a couple of seconds between each number. I got to have a little trial run, where the neuro and I gave the answers together. On the third number, he made a mistake, and we laughed. Then I got to do it for real. The numbers kept coming for about a minute or two, maybe more. It gets confusing after a while. When the cd was finished, he looked up from his little sheet and said, "Well done. 100%."
I was relieved. At least I didn't screw up.
"Normally, people don't get past the third number," he added.
Well, I was competing with people who had cognitive malfunction as a symptom, so I didn't think too much of it. Until he added, "Including the doctors."
When the other neurologist came back, he said to him, "Hah! She scored better than you did on this test!"
I'd be lying if I said I wasn't suitably chuffed about that. And I know I'm blowing my own horn, but I have to. When the time came for me to hop on one leg, I couldn't do it. Even a young child can do that! I also couldn't walk heel-toe in a straight line, or stand up straight when I closed my eyes. So allow me my moment of glory in the cognitive test, lol.
Then I had to walk 25m as fast as I could, which was 5 seconds. I was quite amazed. Back in the examing room, I had to do the run-of-the-mill tests for sensory disabilty and muscle weakness. This including him bending my toes up or down, and me having to say which direction he was doing it with my eyes closed. My poor toes are so numb I couldn't even get one right. I also couldn't detect the vibration of the tuning-fork thingy he kept prodding me with. But, like I said, no surprises. Eye-test went okay, not brilliant, and that with my glasses on.
Ended up on a four on the disability scale which pleased me. Remember, I needed to be 5.5 or lower to be on the trials.
Then he asked me some personal questions about my bladder function (not good), whether I have depression as a symptom (I don't) and my sexual function. (Relax, I won't discuss that. Except to say that it didn't embarass me at all, I must be getting quite mature :-)

Then it was off to do the lung-function test where I met a lovely, lovely nurse called Mandy. The lung-function results came back a bit low. Sur[rise, surprise. Not.
But not low-enough to exclude me from the trials. The lung specialist (or whatever they're called) was very nice, too. He'll be monitoring my reactions when I start taking the drugs, as that is one of the presenting side-effects during the inital dose.

Next, it was off to have my brain scanned by MRI. This went all right. I was only in the machine for about 40 minutes, because they only wanted a scan of the brain, not of the spinal chord. I was cautioned to remain very still. Which was hard as my eye started itching ferociously while I was in there, but I managed to ignore it. Then they injected the contast dye in and back I went for the second scan.
I was very disappointed, as neither my doctor nor myself got to have a look at them. The cd was shipped straight off to Switzerland to be analysed. So much for my free MRI scan. Doesn't help me at all.
I finished off the day, with some chest x-rays, which fortunately were short and sweet, and then Michael and I ate at a fantasic coffee shop at the hospital. It's part of the popular Wiesenhof chain. I had a lovely spinach, mushroom and feta wrap and a naughty slice of lemon meringue pie. But hell, I needed it after all those tests.
Michael was a real darling. My waiting-room man, I call him. He just waited and waited for me the whole day. Bless him.

My chances of getting on the actual drug are higher than I thought - 66%. The three arms of the trials are the placebos and then two categories of the drug, in different potencies. I'm just hoping for the best.

Now I just have to go for an Evoked Potential test next Friday, and then I will hear in about two weeks whether I've been accepted on the trials or not.

Of course, now that there is a possibilty of me going on them, I'm suddenly feeling much better. I walked around brilliantly the whole day without a single exacerbation. Either I'm really psychological, or the ion detox/ homoeopathy/ exercise is working for me!

The trip home was strange and wonderful. First, we sat in a traffic jam for an hour, which was neither strange nor wonderful.
But on the second leg of the trip, we had quite an experience. On a long stretch of road close to home, we watched the most beautiful twilight spectacle unfold.
Ahead of us, there were clouds overhead of a cerulean blue sky, interspersed with shades of baby pink and mauve.
To our left and our right the sky was a dark indigo, with black clouds. It was pouring with rain on either side of us, but none where we were driving. It was like going through a surreal tunnel, in a parallel universe. We were flanked by a long line of bluegum (eucalyptus) trees on the left, and kopjies on the right. But the most magnificent of it all, was the display of lightning. None where we were, but clearly visible on either side of us. Totally awa-inspiring.
Add to this, one of our favourite cd's playing on the radio, and it was just too magical for words. Michael and I share a huge passion for music. It was one of the (many) things that brought us together. I wish I had a photo of tonight.
When we got home, there wasn't a cloud in the sky, and it looked just like Vincent van Gogh's Starry, starry night. Breathtaking.

After all the activity today, my back and hips are feeling pretty much okay. Man, but this swimming lark of mine is paying huge dividends!

Better that I wrap up this post before it starts to rival Tolstoy's War and Peace in length.
I'll just leave you with this rather interesting link that I poached off Donna's blog:
MS-simulator.

Countdown.

2007-01-15T10:47:00.000+02:00

Tomorrow is my appointment with the neurologist. I'm excited about it but also nervous. I read up on some of the side-effects of the drug, and they include shortness of breath (which I hate), diarrhea, chest infections, headaches. Although, they are nowhere near as bad as the side-effects of the inteferons. I still haven'y forgotten the vicious leg-spasms I got from them!
What also bothers me, is that of course no-one knows what the long-term effects will entail. Scary.

And of course, there is the big question of: Am I on the placebo or the Real Thing? (Maybe I'll be really naughty and have a blood-test to solve that one. Then at least I'll know, and can carry on with my fasting program).

Anyway, tomorrow I'll find out if I can even go on the trials, wwhich is the first hurdle.

I swam 80 laps yesterday, and am loving it. I can feel a difference after only two weeks of swimming.

However, the relapse is starting to affect my breathing, which is very scary. Slight difficulty taking in a deep breath, which I recognise as a sign. This means that the lesion on my spinal cord is intefering with it.
I remember back in2001 when I was diagnosed, when the neuro saw the MRI scan, he panicked and admitted me to hospital for steroid treatment immediately, saying that I could stop beathing at any time. At least I only have one more day to wait until I can take medication at any time I feel I need it.
But given that my breathing laboured, I might skip the swimming today.

We watched Casablanca last night, and it was so good. Michael enjoyed it a lot. He said that at first he thought some of the stuff they said was corny, until he realised that that was where the lines originally came from!

Quotes from Casablanca that we all know and love:

Here's looking at you, Kid.
Play it again, Sam.
We'll always have Paris.
The lives of three little people don't amount to a hill of beans in this crazy world.
Of all the gin-joints, in all the towns in all the world, she walks into mine.
I think this is the start of a beautiful friendship.

Happy day!

2007-01-14T14:19:00.000+02:00

Today was such a happy day in my family. We celebrated the first birthday of Melany's little boy, Zander. He is Michael and I's godson, and very important to us. Melany and Tommie threw a lovely Champagne Breakfast Party for all of us, and it was so enjoyable. They really know how to entertain, those two! All of Michael's family was there, which doesn't happen that often, as his brother and family live six hours (by car) away. I felt sorry for them, having to drive back in this heat.
There was the most marvellous fruit salad at the party, so I kept up with the healthy way I've been eating lately. No that it was difficult. That was the Rolls Royce of fruit salads! And I got to take some home with me.

What made it the best for me, was that I was walking around (almost) normally, even in this fearful heat. I've been looking forward to this, so it would have been dreadful if I was having one of my ms-sessions.
Actually, (though I don't want to say it out loud) I'm feeling quite a bit better. Not completely myself, certainly, butnot too bad. Whether this is from the homeopathic medicine I've been taking, or the Body Cleanse detox, the swimming, eating better, just plain coincidence, or a combination of them all, I cannot say. But I hope it keeps up till Tuesday, so I can look all perky at the trials, and have the choice to go on them if I choose.

On the subject of swimming, I did 84 laps yesterday. I was quite impressed. I did notice however, that I do most of the work with my arms and that I need to concentrate more on my legs. They're still very weak, though they are better than they were. I'm not complaing about how toned my arms are starting to look, I can tell you. I use my arms a lot, to compensate for my legs being weak, and my balance being off. Tip for women with saggy arms: Use a walker for a while, and see the difference! Anyway, the swimming is adding a nice touch of definition to them.
I read online that swimmers tend to lose weight slower than with other forms of exercise. Apparently it boosts the appetite. Don't know how true this is, but I was thrilled to read it. I really don't want to lose weight, just to tone up (a lot!)

Things that I want to do this week:

Read my Neuro Linguistic Programming book. (Finally!)
Work up to 100 laps in the swimming pool.
Finish learning Pachelbel's Cannon on the keyboard. (It's sounding divine, btw).
Plant a tray of wheatgrass and sprout some Mung beans.
Start off (gently) with my Pilates exercises.
Make myself Carrot Juice at least three times.

I guess that's enough resolutions for one week.

I'm going to place my book order now. I get my retail therapy online at the moment, because I don't have enough energy to trawl through the shooping malls. I prefer it anyway. And I really love it when people give me vouchers to spend online!

I found some Blueberries in our local SPAR today for only R5.99. Normally, you only get them at Woolworths, and they'll set you back R29.99 for a small punnet.
Apparently, the bio-flavanoids in blueberries aid greatly in remyelination, which, if you have MS, you'll know all about.

M & I bought a stunning puzzle featuring the original movie poster for Casablanca. It has Ingrid Bergman's face on it, an a background of Rick's café. I have seen the movie a couple of times, but Michael hasn't. It's showing on tv tonight, so we'll definitely be watching or taping it. We wanted to watch the movie before we built our puzzle. Every now and then, we buy a puzzle that really appeals to us. It has to be something that we'd want to see on a regular basis, as we have them framed when we're done and hang them up on our living room wall. Kitsch, maybe, but we love it. We don't buy just anything, it has to be something really special. So far, we have a collector's edition of Mickey Mouse, an Egyptian painting from one of the pharoah's tombs, and Vincent van Gogh's Sunflowers. (While we were building that one, Vincent (or Starry, starry night, as most people know it) started playing (by chance) on the hi-fi. Which was really special, we got all emotional because there we were, building a masterpiece, listening to a song on the artist's (tortured) life.
This is why we have to watch Casablanca (apart from it being a stunning movie). We don't just build puzzles, we live them for a while, lol.

Some inspiration always welcome.

2007-01-12T23:39:00.000+02:00

The rain did clear up and I had a fantastic swim. The muscle in my thigh seems to have recovered, and I managed to swim 50 laps again. I'd say the pool is about 8 meters in length, thus I swam approxiamately 400m. It's going much easier now, My next goal is to work up to 100 laps. I plan to keep swimming till at least end of April, if at all possible. May, too, weather permitting.
I am so thrilled to be exercising again, I can hardly describe it. I was so very active my whole life (and especially loved to swim) until the whole ms thing came along. And I live with a very fit and active man, who takes his exercise seriously. To sit on the side-lines all these years just did not do it for me. Which is why I am loving it so, now.

I'm very into NLP (Neuro Linguistic Programming) at the mo. The basis of it is to reprogram the brain, discarding negative beliefs and thought-patterns, and replacing them with healthy and positive ones. It can be very beneficial in the management of chronic diseases. I have one book on it, NLP for Dummies. But I did a search tonight on MS and NLP. I got a fair number of results, one of which has really excited me.
It is a book written by a guy called Dermot O' Connor who was diagnosed with ms and managed to turn it around, by diet, exercise, Chinese medicine and NLP! I did a search on my favourite online bookstore, Kalahari.net and lo and behold, there it was! My parents-in-law kindly gave me a voucher for my birthday, which covers most of the amount for the book. So first thing tomorrow morning I will be ordering. To say I am excited is a severe understatement.

I'm actually feeling not-too-bad-at-all tonight. Probably a combination of the detox and swimming, and the cooler weather that we are having, thanks to the rain.

Michael's brother and his wife are in town, visiting, so we are having a nice family get-together and on Sunday we are going to a party for our nephew and godson's very first birthday. Can't wait, actually.

Detox

2007-01-12T14:45:00.000+02:00

I feel a bit better today than yesterday. I think it was triggered by not sleeping well the night before last, and then having three bananas for breakfast. Foods with a high G.I. (glycemic index) seem to trigger exacerbations when I have a relapse.

Anyway, went for my detox. The practitioner is really nice, I like her a lot. The maching is called The Body Cleanse, and works on the principle that because of the ionizor in the water, the toxins move from a higher (the body) to a lower (the water) concenctration. That is how I understood it, but it could be the other way round.

When she did the readings of my organs (which is done by me holding an electrode in my one hand, and her applying a little prod, I suppose you'd call it, to various points on my fingers and toes, thus enabling the current to move through me) some of the reading were better than previously, but others are still very low.
My mineral level has thankfully gone way up. Thank goodness for that, as I've drinking the full-dose of my mineral drops.
My nervous system reading was still very low, although it did go up a lot on the second reading, after the detox.

My lung reading is dangerously, dangerously low. I'm worried about that.

The water changed colour today, as last time, but not as much. I find this whole process very interesting, and will definitely stick to it for a while.

We just had some lovely, much-needed rain. Hope it clears up by this afternoon though, as I'm eally looking forward to my swim.

Right now though, I have a baked butternut waiting for me in the oven. I absolutely love butternut, especially with a dash of cinnamon.

Tired

2007-01-11T17:27:00.000+02:00

I feel very fatigued today.

I guess it didn't help that I went to sleep at 1:30am and got up at 8am. Way too little sleep for me.

I'm going to skip my afternoon-swim for the first time this year (ha ha). Not because I feel tired, but because the muscle in my thigh where I fell and got stabbed with a piece of plastic really hurts. I think I'll just rest it for a day, and hopefully I will feel better tomorrow.

I'm doing another of those ionization detoxes tomorrow. I do think the last session was quite helpful, I'm very interested in going again.

I'm trying to think of something entertaining to write about, but I'm too sleepy to concentrate. Bit of a mental fug I got going here.
That, and I think I've had a bit of an overdose of blogging since our adsl got connected. Too much of a good thing, I guess. I feel sated, like when I've had too much chocolate.
Till tomorrow then.

Wacky Wednesday

2007-01-10T23:18:00.000+02:00

Not really, but it's been nice.

That's the thing about life - there are moments of pure joy that make us want never to leave this world.
My whole day was good, but the end of it was exquisite. Late afternoon, I went swimming at Sonja's (my sister) house. Got to play with little Christopher a bit which was lovely. He's recognizing me now when I go there, it's just smiles all the way. Even held out his little arms to come to me. It just made my heart swell.
Anyway, I did 50 laps (though it isn't a very big pool). I felt great afterwards. Also have managed to eat properly the last couple of days. New year's resolutions going well for once ;-)

When we got back home, I played Michael the Gavotte in its completed form. He said it sounds good, but I think he's glad to see the back of it. Frankly, so am I, lol.
I've been working on the Canon today, and I'm having a great time with it. I've studied music for years, but I never really knew Pachelbel's work before.

Then we watched SCRUBS, and after that, Michael came upstairs to work on the pc. He needed to transfer photo's from his cellphone to the computer so that he could e-mail them for work purposes. Only, the cellphone's software on the computer went completely AWOL. He battled for ages trying to reinstall the software (getting more and more frustrated), while I was waiting, not so patiently in the wings for my turn, blog addict that I am.
So I sauntered in and asked him why he didn't transfer it via the infra-red. We have a port on our computer, and so has his cellphone. He was very delighted with my suggestion and asked why I hadn't come in earlier with this 'pearl of wisdom'. My toes curled at that, because he is the computer whizz, and I'm always light-years behind. But he'd forgotten about the infra-red.

While I was waiting for him to transfer the stuff I went into our room and got it into my head that I have the Canon on CD somewhere. I scratched around, found it and popped it into my CD-walkman (which btw was the best thing I ever bought). This was the full version, played by violins. I put my ear-phones on and the music just engulfed and surrounded me. There was a heavy smell of rain in the air, abd a lovely cool breeze, and it just culminated in one of those really special moments in life where you feel so very happy to be alive. I wish I could bottle that feeling and keep it under my bed for when I don't feel quite as utterly delightful.
'Cause let's face it, you have to take the good with the bad. The lows make the highs so much better. Like Ying and Yang.

I caught sight of myself in a mirror earlier, and I looked just like The Famous Grouse. I wear my hair up when I bath, and it was sticking out in a little tuft at the back. I have to work on my image! Can't go 'round looking like a grouse, even a famous one.

I've made a list of a few things that I intend doing if and when the new meds start working for me. (Why? Because it amuses me).

Take up belly-dancing. Apparently it keeps you really fit and it just can't be bad for your marriage. There are plenty of instructional DVD's around. I'll buy the whole Mata Hari outfit, too. Those baggy, transparent pants, skimpy little top, belly-chain, kohl eye-liner, bindi, veil, the works.
That should be a lot of fun.

Next on the list: If I recover suffiently, I would love to go back to work, full-time. Then I can stop feeling like such a layabout. In light of previous paragraph, maybe I can be an exotic dancer, lol.

And once a bit of time has elapsed, I'd like to have a couple of kids. A boy and a girl, they're on order. We've named the fictional little buggers already: Kristen May for the girl, and Luke Michael for the boy. What gives you the idea I've thought about this quite a lot :-)

Of course, I'm only having a bit of fun, but wouldn't it be nice? As it happens, I reckon I'll make it comfortably till Tuesday without steroids. And I can definitely manage a 100m. Maybe not in ten seconds, but it really shouldn't be a problem. That spot on the trials has my name written all over it, and they say that this is the next big thing in ms-treatment. See, I knew 2007 would be good.

Bloody hell!

2007-01-09T22:50:00.000+02:00

What did I go and do tonight? Only lost my balance and took a fall, right on my hip. Also right on my HOUSE tape, which is now in smithereens.

I answered the phone and it was my sister. "Hello?"
"Hello?" says she, sounding confused.
"Hello?" I say again. This could go on all night.
"Oh, crap," she says.
'Thanks a lot," I say.
Turned out she was trying to phone someone else, but dialled my number. No offense taken. But as I hung up and walked away, I lost my footing. I took another huge step, trying to right my balance, but it was no good. I fell down heavily, hearing a crunch as the VHS tape bit the dust.
"Ow!" I said. "I hope that wasn't the HOUSE tape."
Of course it was the HOUSE tape."
My sister and I really like HOUSE. She doesn't have dish, so I tape it for her every week. There were a whole banch of episodes on that tape. Emphasis on were. There are shards of plastic currently embedded in my upper thigh.
Not really, but there's a very weirdly shaped puncture mark there. Burns like hell.

At least now it's out the way. I've 'nearly' fallen about five times this week. The anticipation was killing me. Now it's done.

Back's feeling a bit sore, but actually better than it did last night, so I don't think any real harm was done. I had a very gentle swim at my sister's house. Bliss.

Tomorrow I'm going to take some of those homeopathic drops that helped with my optic neuritis last month. Can't remember why I stopped taking them, they seemed to help.

I could well be addicted to blogging ;-)

2007-01-09T14:49:00.000+02:00

"Doctor, doctor, I feel like a vibrator!"
"Well, buzz off then."

That is how I feel. Can't think how to explain it. I have all these electrical, misconducted impulses coursing through me. Buzzing, tingling, little shocks... This morning, it was at the back of my neck. Now the toes on my right foot are really numb, which is Very Bad News. Obviously there's trouble on my spinal cord. And I can't have meds till next Tuesday, otherwise I can kiss my spot on the trials goodbye.

I'm having a 24hr fast today. When one fasts, one's own natural inteferons are released so that should help matters slightly. I am supplementing mineral drops in my water, however, as the detox practitioner took readings of my mineral levels (Don't ask me how, but it was fairly scientific and she said they are dangerously low. I wasn't pleased to hear that because all I ever seem to do is take really expensive vitamin and mineral supplements.

I will take it a bit easier with the swimming today, because it seems to aggravate the tingles. Also my hips are flippin' sore again. And my chiropractor has buggered off to Kuala Lampur. Could have been Timbuctoo or Pakistan, too. Wasn't really concentrating except to note that I better find a new chiro.

I'm finished with the little Gavotte, no doubt to Michael's immense relief. I'll now move on to Pachelbel's Canon, which I am absolutely in love with. Once I've come to grips with that, I'll do Beethoven's Moonlight Sonata. Did I mention I really like my keyboard.

But now I think I'll go watch BBC Food channel, which I always do when I'm fasting, masochist that I am.

Tuesday lacks imagination...

2007-01-09T09:01:00.000+02:00

...or maybe it's just me. Feel a bit blah this morning.

I had a fantastic swim yesterday evening with Michael and our nephews. It was so unbelievably nice. I felt more alive than I have in years. Say what you like, but kids do keep you young.
After they got out the pool, I swam laps and was just about transported to Neverland, it felt so good.

However. I guess I overdid it, because I had a lot of backpain last night. Muscular strain, I dunno. Felt like it.

Disappointingly, I'm not really looking very toned after a week's swimming. Guess I expected my flabbiness to just dissolve away as soon as I made the resolution to start exercising. Something gives me the idea that that's not how it works, lol. A month, maybe?
I am eating better, for what it's worth. After a final splurge on my birthday, I've left my bad, chocolatey ways behind me.

The neuro's receptionist phoned me back yesterday to schedule my appointment for next Tuesday. I guess what will be will be. Not really looking forward to the screening tests, though, but I am excited about what I deem to be a step in the right direction.

I've nearly finished mastering the little Gavotte. Have to practise when Michael is not home, as he has absolutely had it with that piece of music. Understandably. It's the pits to listen to someone else practising an instrument.

Yesterday, I was musing to myself how some of my new symptoms have improved. That whole lame arm thing and difficulty swallowing has all but disappeared. Having thought that obviously caused the symptoms to do a re-appearance last night. And this morning I had a really weird experience. It was like I had this electrical sensation, or buzz in the nape of my neck. Every twelve seconds, I counted. It lasted for about 30mins to an hour. Freaked me out a bit, and I thought I was beyond the point of freaking out. Tuesday better hurry up and come fast!

Monday at last!

2007-01-08T10:00:00.000+02:00

I just spent five minutes looking for a cell-phone that was actually hanging 'round my neck. Doh!

I overslept till 8:45 because I surfed till 1am this morning. So I phoned the neurologist as soon as I woke up. Amazingly, I got to speak to him directly. He sounds very nice and on the ball. Anyway, he explained the basis of the trials to me (which I did already know from having read all the related articles).
He enquired whether I have had cortisone recently, and I told him I had, on the 20th of November. He said that they initially have to do screening, and can't do it until at least a month after me taking cortisone. Which is fine, but not if I take it now again. His receptionist is going to phone me for an appointment. I hope it is soon, as I can't hold out indefinitely without taking the medication.
He also said that I can't be over 5.5 on the disability scale if I want to partake in the trials. I explained to him that ordinarily I am safely under 5.5, but with my current relapse I'm finding it a bit harder to get around. I need to be able to walk at least 100m unaided. I can still manage this, unless I'm having an exacerbation. But they need to make that appointment soon.

The good news, is that they won't be doing invasive tests, such as lumbar punctures. The pharmaceutical company actually wanted to, but Dr said he thought it was unethical on trials. Yay for him! Otherwise I wouldn't have been interested.

So now I'm waiting for the phone-call to tell me when I should come in.

If I do get on the trials, I will be having loads of free M.R.I. scans, which would be interesting. Also, they are going to pay travel expenses of R150 each time I go to be evaluated. Please hold thumbs for me that I get on these trials. The way I understand it, the trials for safety are basically over. This is just a bigger trial so they can assess benefit and get FDA approval.

On the flipside, I have plenty of motivation to go on my juice-fast. Starting today. I have mentioned before how this delays a relapse, so better that I get to it. Then I can stretch the meds till after my evaluation, at which I apparently need to be quite perky.
Also, next Sunday is my nephew and godson's first birthday party. I would really like to be there, and able to walk, too, thank you very much.

So I wait in anticipation to hear my fate ;-)

Other than that, I will keep up my daily swimming, which can't hurt, and I'm going for another ionization detox on Friday (have to find out what the actual name is, lol)

Also, finish the Gavotte that I'm busy with on the keyboard. Not nightclub material, certainly, but as always I find myself drawn to the classics.

Secret Ambition.

2007-01-07T09:45:00.000+02:00

When I was younger, I had this secret ambition. I wanted to do a stint as a lounge pianist. You know the type of place; glamorous, dress-up bar, where patrons dance slow, smoochy numbers on the dance-floor.

I would be playing the (grand) piano on a slightly raised platform, in the smoky, subdued lighting. (This appealed, regardless of the fact that I've always really hated smoke). I'd be in a sparkly evening-dress, with my hair up and falling down in little tendrils.

Back in the days when I wondered (as any girl does) where I would meet the love-of-my-life, I imagined that it would be there.
As it turned out, it was in a smoky, dimly-lit bar, but I definitely wasn't playing the piano at the time. The evening did, however, turn out to be much more memorable than I could ever have imagined.

Back to the piano, though. Thing is, A) we certainly didn't have the kind of stylish bar/ club needed in my own home town. Anything but. And B) sadly I was light-years away from the talent needed to perform to that calibre. Or no, not lacking in talent. I had, after all, taken over a decade of classical piano lessons. I was (fairly) accomplished at Mozart, Beethoven, Bach and the likes.
But I certainly didn't have a crowd-pleasing reportoire of popular songs from the 1950's, which I suspect may have been a prerequisite. Nor did I make work of acquiring one. Same old procrastinator as always. If there wasn't an exam or recital looming, I wasn't bothered.

These days, my secret ambition goes more about being able to walk in a straight line. But I haven't completely given up the pleasant fantasy of one day playing as Time Goes By in a Casablanca-esque style bar. Play it again, Sam, indeed. I hope I get to do this one day before I die.

And just in case, I'm working on my reportoire now...

Idyllic Saturday.

2007-01-06T22:05:00.000+02:00

Had a really lovely day.

Slept latish this morning, as I had a bit of a sleep deficit thing going. Actually slept really well last night. Feel refreshed.

I have a new lease on life from the swimming. I look forward to it so much, and Michael has a hard time getting me out of the pool once I'm in. Definitely my favourite part of the day.
On Friday, I swam at my sister's house. And was treated to the sight of a beautiful little dragonfly dipping and swooping for water. Irridescent blue and green and magical-looking.

Then, on the way home today, I was transfixed by the breathtaking sunset in shades of indigo and pink. It made me experience a moment of heartfelt gratitude for the gift of sight. Ever since I started getting these recurring bouts of optic neurits, I really appreciste my eye-sight.

Finished reading Maeve Binchy's The Whitethorn Woods. I think it may be the most charming book I've ever read in my whole life.

I think I might be onto something with this ionization detox thing. I do feel a bit better, I think.

Still counting down the hours till Monday, when I can phone the neurologist and see if I can be part of the drug trials.

It's sooo hot here! Think I'll have to have a cold bath before going to sleep.

Sleepy time...

2007-01-05T22:25:00.000+02:00

I feel back to normal tonight, so I'm looking forward to a good night's sleep.

Did I have the promised energy boost? I actually reckon that I did. I didn't have a serious exacerbation (the kind where I can't bloody walk for an hour or two) today. Surprising, considering the merciless heat.
I didn't do much today, so it could be that, too, but when I had my afternoon swim I must have been in the pool for about an hour, maybe more, doing laps and water aerobics and carrying on. And I was fine afterwards, walking all right and everything. My legs are becoming much stronger in the water. At first (last week) they felt like little chicken legs, really feeble. Now I can kick fairly strongly, it feels divine, so free. Of course, lack of balance isn't really an issue in the water. It's very liberating.
I'm enjoying the swimming sooo much. Totally the highlight of my day.

I'm so hoping I can get on the drug-trials for the FTY720. But to steel myself against disappointment, I've realised that I have no control over any of it. Best case scenario, I make the trials and get the actual drug and not the placebo. But it's out of my hands, so I'll take what I get.

I do seem to be feeling a bit better today. I'm definitely going to pursue this whole ionization detox thing. For what it's worth.

Today I learnt to play half of a quaint little Gavotte. It feels so good to play again. So very therapeutic.

This heat is relentless. Wow. Predicted temperature for tomorrow is something ridiculous like 35 or 36 degrees C.

Trials

2007-01-05T13:56:00.000+02:00

I phoned my sis to tell her about the trials. She knows about them. She said her neuro was keen to put her on the trials, but said that she had a 50% chance of being in the placebo group. That is what I'm afraid of, I told her.
But you're not taking anything, anyway, she reminded me. Good point. But I'd hate not knowing which group I was in. Guess I'd have a fair idea if I started improving, and getting side-effects, hey? Mind you, a placebo would probably work on me just as well. Which might be the best thing, actually.
Guess I'll just have to wait and see if I can even get on the trials But Monday seems so far away.

The penny dropped that it definitely the detox session that caused my insomnia. I generally don't sleep well when I'm detoxing.

The practitioner said something very pleasing to me. She said that it was significant that I had come in on my birthday. Like a re-birth. I really liked that, because that kind of sh*t does it for me, lol.

My new year's resolutions for 2-doubleO-7:

Eat healthily (that is par for the course, naturally)
EXERCISE! Whatever I can manage, but I must do some form of it everyday.
Live neater.
Come to grips with the whole meditation thing.
Learn to play one new piece on the piano every week.
Oh, and to be a nicer person. I'm generally nice to people, but sometimes I add some bitchy comment in my head. And thoughts are just as important as what we say and do. Not good for the karma, you understand.

That's about it.

Some clarifying points:

I've been doing quite well on the exercise front. I've swum nearly every day this past week, and my hips are loving it! I'm sleeping so much better, because they aren't half as sore and stiff. Even though I'm currently having a relapse which tends to aggravate my hips something terrible.
Michael and I are very untidy and piggy in our flat. But it's gotten to the point where it's not cute anymore, not even to us. So I'm having a massive springcleaning session. Only bit by bit, of course, but it's starting to look better. Now we don't have to live in fear of unexpected visitors. Our 'crib' as Michael calls it, is looking quite good. Michael can be seriously cool when he feels like it.
I'm really looking forward to expanding my very meager piano reportoire.
And yes, I do believe in karma. I think bitchiness comes home to roost.

How can I wait?

2007-01-05T09:56:00.000+02:00

Phoned the neurologist's office just after eight, but all I got was a recorded message saying that his office is closed until Monday the 8th. Damn, how will I hold out till then?

I'm really tired, as I only got about three hours sleep last night, and I need a lot of sleep.

No side-effects from the detox, thankfully. I was warned that I may have a headache today. I'll definitely be going again next week.

I got some really nice stuff for my birthday.
From my dad, I got a lovely Casio keyboard. When I was visiting by them the other day, I spent ages playing on their piano, and on my mom's brilliant new digital piano. and I told my dad that it was one of my new year's resolutions to play more this year. So he very thoughtfully bought me my own keyboard for our flat. How sweet was that?

From my mom, I got the back brace that has given me a virtually pain-free festive season and birthday. In addition, she got me a lovely (really nice) diary for 2007.

Michael gave me some money to fund my various detox ventures. He also took the day off work, and made my birthday special beyond imagining.

My parents-in-law gave me a voucher to spend at Kalahari.net, my favourite on-line store. And miraculously, I found a book that I've been looking for for years, discounted to the same price as the value of the voucher. Isn't that amazing?

From my sis-in-law, I got a Woolies voucher. Now that is what I call a quality present! I love Woolworths.

My aunt and cousin gave me a 14 steps to Detox book. Do they know me or what?

And of course, I was bombarded by phone-calls the whole day, which was lovely, and a whole bunch of e-mails. One of my best friends called me this morning, saying she couldn't get hold of me yesterday. We chatted for ages and caught up with each other It was so good to hear from her. And I got an e-mail from another dear friend in the UK, so it really was a special day. Also, my granddad, sister and sister-in-law phoned me last night. It's so nice to be made much of on one's birthday.

My sexy keyboard

2007-01-05T10:15:00.000+02:00

Here is a pic of myself and my new keyboard, which I am loving. Unfortunately, I'm in my jammies, no make-up etc, but doesn't that just remind you of being a kid and playing with your presents still in your pj's? Although, this photo was taken at night. I was already in my night-clothes, not still in them, lol.

Too happy

2007-01-05T02:50:00.000+02:00

It's 3am and I just haven't been able to get to sleep.
I feel very hyped up after the excitement of the day, I think it was a bit much for me.
I feel very happy though, almost euphorically so. I feel that my life can never be as perfect as it is right now. I have so many great people in my life that I feel almost overwhelmed by it.
Fantastic parents, siblings, friends, and the best husband there ever was.

However, I don't trust a high this high. Guess it might have something to do with the detox I had. Probably stirred up some things. I'm just feeling things so keenly at the moment.

Michal told me a terrible crime-related story that he read in a newspaper just before we went to bed. I can't stop thinking about it and feel so worried about where it will all end. (The crime in this country, I mean).

Then, I can hardly wait until tomorrow morning to phone the doctor about the drug trials. I'm so psyched about it.

I feel very fidgety. Wish I could calm down and go to sleep.

Great birthday, cont...

2007-01-05T00:09:00.000+02:00

I am loving the adsl connection no end.

I'm so excited right now that I can hardly keep my bum in the seat.
I went onto the ms South Africa website, and lo and behold, there is an invitation to participate in the phase III trials of a new drug for the treatment of ms. It is taken orally (no injections, YAY!) and has shown very promising results in phases I and II of the trials. The drug is called Fingoldimod, and is reputed to reduce relapses by over 50%. It is set to become the next big thing in ms treatment.
It is a global trial, so SA is included. Tomorrow morning at 8, I will be phoning the doctor doing the trials in Jo'burg. I so hope that there will be a space for me on the trials.
Hold thumbs!!

Birthday Blog.

2007-01-04T15:24:00.000+02:00

Today is my 27th birthday. How did that happen? lol
It has coincided with the installation of our broadband connection. No more dial-up. Yay!
Yay, yay, yay!

So far I've had one fantastic birthday. I love my birthday. So nice to be the centre of attention for a day. So much love comes your way. People whom you haven't heard from in ages phone you. So nice.

Call me weird but I went for a detox thingy this morning. Using some electrical equipment, the practitioner took readings of my various organs. Not surprisingly, they are mostly way below normal. I'd have been surprised if they weren't though. I am having a relapse.
Then I had to put my feet into a basin of water with electrodes and stuff in. That's what I call trust. It has something to do with ionization, and detoxes all kinds of sh*t out of your system. She says I can expect a boost of energy tomoroow. Can't wait, ha ha.

I got some really nice gifts, but I'll post about them later. I just had to do a post on our virgin adsl connection. The first of many, I'm sure.
Now I can be a one-a-day blogger.

Happy New Year

2006-12-31T23:59:00.000+02:00

What can I say about 2006? Parts of it were great! Parts of it, not so great. Parts of it downright shitty. Just like any other year. I don’t feel much like reminiscing just now, anyway. I’m too excited about the new year. Can’t remember being this excited about a new year in a looong time.

Some things that did happen, that stick out:
My eldest sister and her husband got their long-awaited baby.
My youngest sister was diagnosed with ms.
My second eldest sister emigrated to Australia.
My aunt by marriage passed away, tragically.
My brother and his wife welcomed their third daughter into the world.
Michael’s sister and her husband welcomed their third son into the world.

Quite an eventful year, from that perspective.

My major goals for 2007:

To eat better than I did this year,
And to start and maintain a healthy exercise regime.
And to improve my heretofore precarious health levels in any way that falls within my reach.

I have made a start with the exercise. For the past three days, I have been swimming every day. I think that there is already a difference in my hips. I have great hope as far as this is concerned.

It is nearly midnight. About fifteen minutes till the new year. And I have pigged out till the bitter end. Tomorrow starts my year of eating as healthily as I can. Mainly, I want to cut out gluten, sugar and saturated- and trans-fats. Also preservative and additives. But basically, I just want to focus on putting quality food in my mouth. I don’t want to pursue a restrictive and unreasonable diet. Just one that is healthy while at the same time being ‘livable’.

I ended up not taking medication for my relapse over Christmas. And though I don’t want to say it out loud, I’m actually feeling all right. Very glad I didn’t get treatment yet. Maybe I can even eke it out for another month. Here’s to hoping.
So while I have to take it easy, and not overdo things, I’m not feeling too bad. Dare I say that it’s a sign for a very good year?
Happy 2007 everyone. I think it’s going to be a good one.

The good life

2006-12-17T12:36:00.000+02:00

I've got music,
I've got rythym,
I've got my guy -
who could ask for anything more?

Gershwin

Anyone who reads this blog of mine should be getting used to my ups and downs. I'm not, though, it still catches me unawares, even when I take medication that I know makes me depressed. Slow learning curve, I guess.

My back is finally feeling a bit better. I caan live with it like this. The brace must be helping. I;ve also decided to start exercising before the whole works falls apart. So I'm going to start swimming again. I've avoided it for the last three years because of the chlorine in the water, which upsets my ms-symptoms. But I find it a lot more upsetting not being able to sleep at night from the severe pain in my back, so I think the chloring is the lesser of the two evils.
My parents have a salt-water chlorinator in their pool, which I reckon is my best bet. Now that I've decided that I'm going to start swimming I'm so excited I hardly know what to do with myself. I love swimming. It is my absolute favourite. Can't wait for this afternoon.

I'm going to investigate the exercises that fall within my abilities and make a plan. I'm not good at living with pain.

My parents invited us out this morning to have breakfast with them atmy favourite new restaurant. There was a lovely breakfast-buffet to choose from. So lovely, in fact, that I didn't even have to go off my healthy eating plan. I had a simply delicious fruit salad. really, really good.

I'm on day 6 of my new, improved diet. And feeling much better for it, too. I decided that I may boycott Christmas dinner this year, as I wanted to go on a juice-fast. Well, not wanted to - had to. It is the only thing that stops a relapse. Well, slows it down, anyway. Noticably. So it was either juice-fast for Christmas, or spend Christmas in hospital, mainlining cortisone. Surisingly enough, I opted for the juice.
The thing is, I was feeling crap. Of course everyone says to me, oh, but you look good. But they don't know what's going on behind the scenes.
Optic neuritis, which comes and goes in severity and generally freaks me out, because it leads to loss of vision, fatigue, ataxia (difficultity in walking) loss of strength and co-ordination in arms, heat-sensitivity blah, blah, blah.
But the other night, I lay in bed, fighting off the pain to try to get to sleep, when I thought I was having a mild anxiety attack. From the way I've heard it describe, this is what I thought it must be. The pain wasn't helping, of course.
Then I thought to myself, "You know, you don't really do anxiety."
This is mostly true, even under extreme provocation.
Then I realised it was an ms thing. I can't describe it for the life of me, though I have tried. It happens every night, sometimes more severly than other times.
It starts with like a whole-bode 'restless leg syndrome' feeling. I feell very weird inside my body, spaced out, and heart feels like its skipping beats. When I try and lift my arms, they feel like jelly. In fact, that is what triggers the rest of the feeling, lift, or moving my arms. So obviously I try not to do that.

Anyway, since I've been eating better, I've been feeling generally better, (Surprise, surprise). So I think I may postpone the fasting till after Christmas, and hopefully after my birthday, on the 4th of Jan. Still, I'll take it day by day. All I know is that it is helping enormously that I'm not in so much pain anymore. The back brace does seem to be helping.

Michael has ordered our ADSL line, so no more dial-up for us, shortly. Means I'll be able to update my blog every day. Now that will be nice.

Back Blog

2006-12-15T12:37:00.000+02:00

As if i ever write about anything else, lol.
I got my back brace, or guard, or whatever you call it.
So far, I'm optimistic about it. I don't wear it the whole time, as that will weaken the muscles and be counter productive. But like I said, seems to be helping. My mom was kind enough to buy it for me as an early birthday present. Not that exciting, she apologised, but I said that I find the idea of a pain-free Christmas very exciting indeed.

My life has been a tad sucky this week. As if I don't have enough on my plate, I've gone and injured two of my ribs at the back. Stabbing pain every time I breathe in. The chiropractor fixed it, but less than two hours later, it was out again. See - sucky.

I've decided, however, to go back in denial.
I was in denial for a long time, and since I've faced up to 'reality' (very over-rated) I'be been nothing but miserable. Hence, I've crossed back over into denial. What's wrong with that, anyway? People always say it like it's a bad thing.
So now I once again belive I will get better, live happily ever after and children by the dozen.
I think I'm a bi easier ot live with as a result. Much miore peppy.
To my way of thinking, it can't hurt. Much better for me to be thinking positive thoughts, and feeling happy, than to sit and feel sorry for myself about the inevitabilty of it all!
I have detailed fantasies where I am completely recovered. Able to walk normally, run, jump and dance. Wonderful. I can spend ages living in this fantasy world, because it makes me happy. What harm?

People must make up their minds. They accuse you of living in denial, not facing up to things, while simultaneously admonishing you to have faith, don't give up hope.

And, I've started eating properly again. I stuff my face with rubbish when I'm feeling miserable. But now I feel encouraged to feed myself the best, most nutricious foods that I can. Today is day 4. Yay for me! Didn't even join the others for pancakes at lunch.

Blog of the day.

2006-12-06T22:59:00.000+02:00

The session at the chiropractor’s went quite well. Bad news, though. He might be leaving SA to go and work overseas. Bummer. Who’s going to ram my hip back into its joint every second month?
When I got into his office, he asked of me, “Same procedure as last time, Miss Sophie?”
To which I replied, “Same procedure as every year, James.”
(These are lines out of Dinner For One, for those of you unfortunate enough not to have seen it).
After that little repartee, I clambered up onto the bench. The thing I hate about chiropractics, is that parts of it are quite nice. You get massaged with a large electric massager. Then just when you are nice and relaxed, and your pressure points zinging, you have to lie on your side in fetal position, and take a deep breath. On the exhale, the practitioner, using his weight as leverage, crunches your hip bones into an alignment more pleasing to him. Then you have muscular pain for at least two days afterwards, as your muscles get used to their new placement. And I pay for this!
I’m thinking I’d better get myself (by hook or by crook) some sort of back brace, to keep the fecker in its joint. I know you get special ones for sacro-illiac problems. Where to find one though? Every time I stand up, just about, I can hear all sorts of uncalled-for clicking going on in my back. I’m starting to get the idea that I’m throwing good money after bad, going to the chiro. And I’m not yet ready for a screw. (A titanium screw, surgically implanted to keep my hip in place, that is, for those of you wallowing in the gutter).

My little niece (10) is getting so aware of fashion. It’s just adorable. And she knows what she wants! Bright colours, and plenty of bling. I’ve promised her a halter neck top (one of those ones that go ‘round your neck, as she described it to me). She’s already scouted one out at Foschini’s Kids. Can’t wait for her and I to go and buy it. She’s so darling. Definitely think of her as the daughter I never had. (Don’t tense up, I’m not going to use the opportunity to start bellyaching again about baby-stuff).

About that though, I had a re-think about my blog and packing out on it. Thing is, I need to pack out, that’s the way I’m programmed. And far better to pack out on my blog, than to a real, unfortunate person. I mean, I’m not forcing anybody to read my blog. Not like in real life, where they’re a captive audience for my tale of woe. In real life, you can’t hit that delicious exit button.
I’m not really a diary-keeping type of person. Not for want of trying. It appeals to the romantic side of me. But I could never sustain one for any length of time. Until the blog thing got me in its grip. I LOVE posting on my blog. Love reading blogs, too. I’m ashamed to say that I get a voyeuristic little thrill out of it.
But I’ve really been flabbergasted by the healing powers of posting stuff that is bothering me on the net. It’s even BETTER than offloading to a real person. Can’t understand it. Don’t want to understand it, just know that it works. Who needs psychotherapy when you have a BLOG? Anyway, the one time I went to see a councilor, she hardly said a word. She didn’t get a chance. I’d barely been introduced, when I sat down on her couch and bawled, gulping out bits of what was bothering me in between sobs. When the time was up, I felt loads better, blew my nose, smiled goodbye, and off I went. (She’s a lovely person, I’ve stayed in touch with her).
So obviously all I need is just to get whatever’s troubling me off my chest, and I’m good to go.
When everything is going well with me, I hardly go near my blog. As soon as there’s trouble, however, I’m at the computer as fast as my legs (and sacro-illiac joint) can carry me. I have no intention of stopping, either. I felt a bit shy of how boring my blog must be, when all I ever talk about is MS. Then it occurred to me: WHO CARES? No-one is being forced to read. And it’s not like I’m trying to win the Nobel Prize for Literature. I’ve met some great people, I feel better, what more do I need? And best of all: IT’S FREE.

Let me just finish this post by saying how much I love Marion Keyes. I’m reading her new book ANYBODY OUT THERE? for the second time. I think she’s the best writer ever, I want to BE her.
What’s strange, though, is that there are a lot of people that don’t like her. Obviously a lot that do, because she’s a bestselling author. But how can anyone not like her writing? It’s brilliant. Humourous and very insightful and touching, all in one go. I’d give my eye-teeth to write a book like any of hers. (Not my back molars, as I no longer have them. Long story).
Still, viva la difference! People can read, or not read, whatever they like.
I really like Chick Lit. But only the very good ones, like Helen Fielding (Bridget Jones), Cecilia Ahern (PS I Love You), anything by Carole Matthews and of course, Marion. Also loved Alison Pearson’s I don’t know how she does it. Don’t give me chick-lit written by a guy, though. What do they know? Chancers.
I have read a couple of more heavy-weight books in my life. Gone With the Wind remains up on a pedestal for me, and I did slog my way through The Fountainhead, and Pride and Prejudice (which was the chick-lit of its day, mind you). So I’m not a total flake. Even though I do love historical romance, from time to time. Okay, I’ll concede that point, maybe I am a bit flaky. Still, nothing wrong with that. It’s my favourite chocolate.
That was lame, sorry.But I’m not afraid to say Chick-lit ROCKS. I’m not one for academic, brainiac thrillers. I want to have a giggle and a good cry, is that too much to ask?