Saturday, August 15, 2009

New address

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:

Tuesday, January 16, 2007

Hectic Day!

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:

Monday, January 15, 2007


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.

Sunday, January 14, 2007

Happy day!

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.

Friday, January 12, 2007

Some inspiration always welcome.

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, 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.


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.

Thursday, January 11, 2007


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.

Wednesday, January 10, 2007

Wacky Wednesday

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.