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Archive for August 2008

It never rains…

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…but it freakin’ well pours!

There has been precious little to watch on TV lately. 7de Laan is grating on my nerves so much that I have decided to stop watching. That leaves HOUSE on a Monday night, SCRUBS and SURVIVOR on Tuesday, nothing on Wednesday, nothing on Thursday and now that the FRIENDS reruns are finished (huge bawling-inducing finale there, seeing M & I sobbing pleasantly as the crew left the apartment for the last time) nothing on a Friday either.

Tonight I had ear-marked for a movie, though. Man in the Moon, starring a very young Reese Witherspoon. I watched that movie in my teens and thoroughly enjoyed it, but due to an electrical storm at the time affecting the broadcast, missed the ending. I’ve been looking for that movie for years, and saw by chance yesterday that it is showing tonight on M-Net Stars. I was feeling awfully excited about that. As luck would have it, it is showing straight after SCRUBS. I even got Michael to agree to watch it with me. Kinda like a date-night.

So I checked now just to make sure that it isn’t coinciding with anything else. Well, of course it is.

I forgot about SURVIVOR (I don’t watch it myself but M never misses an episode). Not only that, but the season premiere of THE OFFICE is showing in exactly the same time slot. What are the odds?

Luckily my movie is repeating on Thursday because I have a feeling that it’s going to draw the short straw 😉

I had an awful night last night. My feet and legs were feeling so horribly numb that it was almost painful, it was so disturbing. I hate that feeling. Hate it.

I know I have a strong propensity for whinging on this blog, but I swear, sometimes I feel like it’s the only way I can cope. I’m part of the MS community in bloggy world. There are a lot of us, and it just helps to know that there are others that understand what I’m going through. Good times and bad. They know what it’s like to lie awake in terror with the threat of permanently losing a faculty hanging over your head. But they also know the joy of recovering from the threat. No mere words can describe it. It lies unwritten, between the lines.

Writing about it keeps me from going batty. Every now and then, I glance over my shoulder and see an abyss of depression, winking seductively. Throw yourself in me, it beckons. But I look away, and sometimes writing a good whiny blog post helps me to show it the proverbial finger.

I decided that MS will no longer keep me from making life plans. It may foil them, I guess I can’t control that, but it won’t stop me from making them in the first place. I am going to take the first of what I hope will be a series of practical piano exams next year. This is risky, let’s not beat around the bush, because it relies heavily on nimbleness and sensitivity in fingers. Something that no MS person in their right mind can bank on.

But I don’t care. I’m going to do it anyway. I read online yesterday (don’t know if it’s fact but it sounds about right) that a grade 5 qualifies one to give casual lessons. Not at a school or to official exam taking pupils, but definitely to beginners. I would love to do that. Anyway, I’m going to shoot for my grade 7, which was the level I was at when I left school.

It was so lovely outside that I decided to have a little photoshoot. Here is my pride and joy, aka the one plant under my care that I didn’t manage to kill, my French Lavender bush.

And a close-up of the blossoms:

And here is my cheeky next door neighbour, Gismo, whom I have written about before. I peeped the camera over the wall to take the photo and he barked at me when the flash went off and buggered off back indoors. lol. Isn’t he a fine specimen though?

Lastly, I just have to mention the fantastic Red Cappuccino I had this morning. I had honestly never heard of it before, but it’s a cappuccino made with espresso rooibos tea and drizzled with honey on the top. The sophistication nearly undid me, I tell you 🙂

I actually had a very enjoyable morning. My auntie and cousin came to pick me up to breakfast with them at a really nice place I haven’t been to before: The Lounge. Where I had the  best omelet I have ever  had! Not joking here. And the Red Cappuccino, which was an event on its own. The setting was so elegant. Groovy, like the coffee house in FRIENDS, just smarter. And the company was great. My aunt and cousin are among my favourite people in the world 😉

There are those who would say that I am living the life. I am mildly defensive about not working, but really, I’d prefer to be grafting my fingers to the bone rather than have a relapse every three months. (If I’m lucky).

That said, I do enjoy my life a lot.

When I’m not whinging about my poor numb digits, that is.

Eish, I guess there is no such thing as a perfect life.

Written by Maggie

August 26, 2008 at 5:23 pm

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Good morning

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I went back to gym this  morning and had a gentle workout I didn’t push myself at all and I think it was very productive. My back is feeling much more stable already.

I’m eating better too and I think that will make a difference. Only had a little bit of sugar in a yoghurt today but at least it had pro-biotic cultures in it 😉

My feet and legs are still feeling numb, but may be fractionally better today. I think they are starting to improve, in any event.

My breathing is pretty much back to normal and my eyes are doing a lot better, too.

I am so, so thankful for this improvement. Looks like I have survived another relapse and another treatment.

Feeling quite good actually.

Michael and I are busy starting to sort through our stuff for our move, coming up in October. We are getting quite excited.

I am going to miss our current home, though. Especially the bedroom. It is a magic bedroom, you see. There are never any flies or mosquitos in it. Even when everybody else is complaining bitterly about them, we sleep a peaceful sleep. Still, I guess we could buy amosquito net if we have to.

But it really is a very peaceful room. The paint is a gorgeous, restful colour and  the ceilings are really high.  

Michael says maybe our bedroom in our new place will also be a magic room. Well, I sincerely hope so.

Written by Maggie

August 25, 2008 at 4:12 pm

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And the cloud lifts…

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I am feeling pretty mellowed out again. Much more my normal self. Thank Heavens for that.

I hope it wasn’t all for nothing. My feet are feeling worse than they did before all the cortisone. And my eyes are not what they should be. Still, I just had a strong sense of deja vu that I have said this before. My motto is to give it a month’s grace after treatment before I judge whether it has worked or not. Plus of course I need to do some re-myelinating of my nerves, which takes a while, too.

Usually, I’m in a panic that it hasn’t worked and that I’m stuck with permanent damage, but inevitably, after the passing of a month, I have forgotten about it because it quietly got better and I didn’t even notice.

It’s easy to be philosophical about these things in theory, but it’s a bit harder when you’re actually living the symptoms. They remain very disturbing indeed. I have gotten used to some of them, but some I never will.

I really hope that this is the last of the relapses. Even if just for six months will be great.

To that end, I’m prepared to commit to a few things to help out where I can. I have noticed a trend in my relapses. They are usually caused by one of the following three: a)sensitivity to chemical smells, b) overdoing things physically, c) stress.

Sensitivity to chemicals is the worst by far. Obviously, I can’t avoid them totally, because we live in a chemical world, but sometimes I put up with fumes that I don’t strictly have to, to avoid offending people. No more. From now on, if something is bothering me, I will simply leave, if possible. I have bought an air purifier for my home and if I am in someone else’s home and they have poisons or harsh chemicals there, I will leave, post haste. I know it affects my MS quite violently and I’m not going to subject myself to it anymore.

As for point b) I will be stricter with myself not to overdo things. If I feel myself getting overtired when exercising, I will just simply have to stop that, too.

C) is the easiest to control. I don’t generally get too stressed up about things, except maybe for point a). lol.

Apart from that, I want to start eating a bit better from tomorrow. I have noticed a definite dip in how I feel if I have a lot of sugar and it’s just not worth it. Michael and I had some Gino Ginelli’s Vanilla Fudge Symphony ice-cream after lunch, and it was a good send off from the world of refined sugar 😉

I really enjoyed watching the finals of the rhythmic gymnastics in Beijing. I am in awe of the strength and talent that those gymnasts have. It is so beautiful to watch. I was especially taken with the bronze medallist, Anna Bessonova, from the Ukraine. So charming. She executed her routine with the ribbon near faultlessly and did it with such charm and obvious enjoyment. She is strikingly good-looking and has such a natural smile, not the forced one that many of the gymnasts have. It was a real pleasure to watch her perform. Obviously the crowd thought so too, because they were rooting for her all the way. I will definitely be following her career in future. Hope she gets her Olympic gold next time.

What a pity the Olympics are over – I was just getting really into it, and becoming the sports fan that M wants me to be. We watched the semi-finals of the men’s table-tennis last night and thoroughly enjoyed it. We’ve decided that if there is enough room in our new house, we are going to get ourselves a table-tennis table. We were both fanatics when we were younger and I think we’ll have a lot of fun together playing. I warned him that he must just know if we get a table he will have to play a game with me at least once a day. Luckily, he says that he gets just as obsessed with it, so it should be fun.

When M and I were just getting to know each other, (before we were dating) I invited him over to my parents’ house to play table-tennis. Actually, I fancied him quite violently and that was the best ruse I could think of to invite him over. So he came over and we played endless games. I remember thinking he didn’t like me that way because when I bent over to pick up the ball, he didn’t even appear to sneak a peak at my rear. And I was taking notice of whether he was checking me out, but everytime I looked, he was gazing up at a bird in the tree!

He (much) later told me that he had indeed been looking at my behind but didn’t want to get caught in the act! lol. Actually, he said it was quite a fond memory of his, and that he’d thought I was very cute 😉

And look at us now, married nearly eight years and contemplating getting a table-tennis table of our very own.

Written by Maggie

August 24, 2008 at 3:57 pm

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I laughed so much at this…

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…once again illustrating the type of sense of humour I have:

One day, while sailing the seven seas, a lookout spotted a pirate
ship, and the crew became frantic.

Captain Bravo bellowed, “Bring me my red velvet jacket.”

The First Mate quickly retrieved the captain’s red velvet jacket,
and, after donning the jacket, the captain led his crew into
battle and defeated the pirates.

Later on, the lookout spotted not one, but two pirate ships. The
captain again howled for his red velvet jacket and once again
vanquished the pirates.

That evening, all the men sat around on the deck recounting the
day’s triumphs, and one of them asked the captain: “Sir, why did
you call for your red velvet jacket before each battle?”

The captain replied: “If I am wounded in the attack, my crew
won’t notice my bleeding and will continue to fight, unafraid.”

All of the men sat in silence and marveled at the courage of
their captain.

As dawn came the next morning, the lookout spotted not one, not
two, but TEN pirate ships approaching. The rank and file all
stared at the captain and awaited his usual request.

Captain Bravo calmly shouted,

“Bring me my brown trousers!”

Written by Maggie

August 24, 2008 at 9:49 am

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Roller-coaster ride from hell

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Wow, this week has been a bitch and then some. Side-effects galore from the meds. Good thing, I suppose because hopefully it means that it is working. Although, must say, haven’t noticed much improvement of my symptoms yet. Probably a bit early to tell.

This month has not been good for me. I’ve never had to have IV treatment so close together before, i.e. two weeks apart. Not fun. Plus the head cold in between. (Have I mentioned that once or twice yet?)

Yesterday, I felt really tired and flat, emotionally. Didn’t go with to Jo’ies, just couldn’t handle it. My mom says my granddad is looking very tired and old. Could barely lift his head up to talk to them. When she left, after the visit, she said, “How about a smile before I go?” And she says he gave her the most beautiful smile. I want to cry just hearing about it.

I love that old guy so much. Had such a good visit with him last month. Can’t believe how much he has gone down in a month.

We affectionately call him and my granny ‘The Wrinklies’. Oupa Wrinkly and Granny Wrinkly. They are so close to my heart. Why is the cycle of life so cruel? I hate that they are old and battling. Such great people I am descended from. Real classy folk.

My parents also visited my sister, Annie and little Sarah-Kate, who is just the cutest little thing ever. She has red hair which grows in a little punky mohawk on top of her head, lol. My mom says it looks like a little cock’s comb 🙂

I am feeling marginally better today. Less depressed, anyway. Covered in a rash and spots, though. The cortisone is very heavy on my skin. I have these painful little blisters around my eyebrows. Know from experience that they will be gone in a week, but still.

I felt in a trouble-making mood yesterday, but managed (through no mean feat) not to make any trouble, lol. I did write quite a ridiculous blog-post which probably wouldn’t have gone down that well. Fortunately, I didn’t post it. Just wrote it, and then deleted in the sobering light of day this morning. There is a lot to be said for letting a post like that air before it goes to print. Funny how some issues that you never even really acknowledged can come up at a time like this.

On a different topic, I have been having fun watching some of the Olympics. My favourite sports to watch are volley-ball, table-tennis, rhythmic gymnastics and diving. Earlier in the week, I caught the quarter finals of the women’s volley-ball between USA and Italy. I was rooting heavily for the Italians. Such nice looking, pretty girls. Excellant viewing. They had two sets each, and a great final, with the USA snatching victory at the end.  Just one question? Why do the girls (on both teams) keep patting each other’s behinds? Comraderie? Team-support?

Today, I watched the group rhythmic gymnastics event. Once again, I was very taken with the Italian girls. They are so cute and were in line for second place when I stopped watching. That to me is just the most entertaining event ever. It’s like watching a finely choreographed dance extravaganza and circus act, all in one. Such unbelievable skill. I always wanted to be a rhythmic gymnast when I was a little girl. My sister and I would cut ourselves a bamboo rod each to twirl and throw as well as a set of plastic skittles we had. We used to entertain ourselves for absolute hours practising. What fun. We only used to go back indoors when it got too dark to see and we kept hitting each other (and ourselves) on the head with skittles. I’m so glad I wasn’t an only child. My sister is the single best thing my parents ever got for me. lol.

When I was a little kid, I have this memory of my mom giving me a couple of really wonderful sweets. The wrapper had a white rabbit on the front and each sweet had a layer of rice paper around it that melted in your mouth as soon as you popped it in. Inside was a sweet, milky toffee, really nice with a distinctive taste. This is one of my earliest memories. We never had those sweets again.

Years later, my mom told me a story from her nursing days. She says there was a Chinese lady in the Jo’burg General that she was nursing. Couldn’t speak a word of English, but was a firm favourite among the staff because a) she was nice, and b) she waved this bag of White Rabbits around everytime a nurse came near her. And the nurses flocked around her like honey, because everyone loved the White Rabbits and the Chinese lady had a seemingly unending supply. She’d offer you the bag, and say, “White Wabbit,” my mom told me fondly.

So the other day, I asked Michael to drop me off at the mall where I wanted to get a pizza. While I was waiting for the pizza, I walked around and popped into a little Chinese shop. I bought a fortune cookie each for Michael and I, because we’ve never had before. (Note: My fortune said, “You will be rid of a burden not your own in the first place”. Any luck that it could be my MS?)

At the counter, what did I see? Only a packet of White Rabbit creamy candies, all the way from Shanghai, China! For only R9.50. I got two packets, one for myself and one for my mom.

She was so surprised when I phoned her up and told her I’d gotten us White Wabbit sweets. She said she’s always been on the look-out for them, but could never find any. When I told her of my early memory of them, she said that she must have gotten them on a trip to Sun City, where one can get exotic sweets.

She came to visit me the following afternoon and did we ever have the best time polishing off those Wabbits?! When that taste hit my m outh it was such a trigger for the memory of when I last ate them, 24 years ago. Even the wrapper was so familiar. I can’t believe that a sweet could have that big an impact on one. It is just something so different. I did a search online for it, and it turns out there is quite a cult following for it, ha ha. The edible rice-paper wrapper and funky outer wrapper, must be. I’ve come full ‘Wabbit’ circle this week 😉

I love obscure memories from my childhood.

White Rabbit

Tin of White Rabbit Sweets.jpg

Anyway, better stop warbling on and go and put some supper on for Michael. He’s getting porterhouse steak and organic veggies tonight.

Yesterday, I made some pretty good lentil soup (if I do say so myself) with portobellini mushrooms and baby leeks. And a bit of miso for the flavour.

It’s actually something I’m working on at the  moment. My cooking. I’m trying out some new stuff. I tend to get in a bit of a rut and make the same thing every day. Especially when I’m feeling like I have this week.

Written by Maggie

August 22, 2008 at 5:38 pm

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Crash one day ahead of schedule

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I think today may have been the crash day. Well, I hope so. Wouldn’t like it if I felt worse tomorrow.

My face is all flushed and I have a rash on my chest and scalp. And I feel so tired.

I did have a great night’s sleep last night, though. It was fantastic. I really missed my bed when I was in hospital. It has this fantastic high density foam mattress. Best mattress I have ever slept on. Plus, I had my Michael’s warm body cuddled next to mine. Yesterday was the anniversary of the night he asked me to marry him, eight years ago. Best decision I ever made in my life, to say ‘yes’.

I seem to be developing an allergy to the plastic plaster they use to secure the drips with. My arm looked so angry last night. And the plaster was only on for 14 hours. I don’t know what it would look like if I had it on for the full five day course. Fortunately, it is looking better today.

I had a whole list of stuff I wanted to do today, but I feel so knackered I haven’t done any of it. It is now quarter past five (pm) and I feel like I can go to bed and just sleep for days. So tired.

My granddad is not doing well at all. When I saw him exactly a month ago, he was looking so good. I had a great visit with him and my granny. They stay in a retirement home in Jo’burg and my granddad is currently in frail care. He is battling to breathe, is losing control of his bladder and is confused. He fell down earlier in the week and hit his head. He is 87 years old this year. He seems to have a mild bout of pneumonia and bronchitis and I am so worried about him. My parents are going to Jo’burg tomorrow to see him and I wanted to go with them. But I am feeling so tired and flat now that I don’t think I’ll be up to taking the trip tomorrow.

I love my granddad so much. He is one of life’s genuinely good people and I have been so honoured to have him as my grandfather. I don’t know how much longer we will have him with us. He has prostrate cancer, that seems to be spreading and as much as I dread saying that last and permanent goodbye, I also don’t want to see him suffer a long drawn-out battle. My heart is so sore for him and my granny.

Yesterday, she asked him what she could do for him. His answer? “Just come over here and love me a bit.”

I had a good cry over that. It was so touching and sad. It sucks to be old and sick.

Written by Maggie

August 20, 2008 at 5:35 pm

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Back home

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I just got back from hospital, where I overnighted to receive another 2 grams of solu-medrol. It went quite well. Didn’t sleep much, of course, but I’m used to that by now and expect it. I actually did manage an hour or two, which was nice. Got up to go to the loo though and nearly passed out from low blood pressure. But I’m used to that too, so I grabbed onto the bed until it passed.

Only complaint? People spray WAY too much deodorant in hospitals. The patients, I mean. Must be a stinky lot if they have to spray out half the can at a time. I know I am overly sensitive to aerosols, but surely there are others there with pneumonia and other lung complications that also don’t appreciate a ton of neuro-toxins heading their way when they are already battling to breathe? When are people going to wake up and smell the coffee that aerosols are bad for us? This is not thumb-sucking, by the way. It’s a fact. Why on earth can’t people use roll-on, for Heaven’s sake?

This morning, the elderly lady in the next bed, depressed the button on her deo for a good twenty seconds, I swear. I could feel the hair raising on my head just from the sound of it. In fact, I nearly levitated clean off the bed in irritation. I flung the sheet over my head to try and stop the fumes, but it was no good. So I went and opened a window in the ward, saying diplomatically that I had low blood-pressure and needed some fresh air.

The old lady immediately started complaining that the window overlooked the smoker’s area and now we would get smoke fumes. (Heaven forbid we get smoke fumes in a room full of deodorant). I patiently explained to her that as it was 5am and there wasn’t a soul demented enough to be out smoking at that hour, we were safe. But that I would be closing the window after ten minutes anyway, before we all froze.

As a penance, I had to listen to her recount her entire medical history, and then listen to a detailed characterisation of each of her eight grandchildren. Oh, who am I kidding? It was an insomniac’s dream.

My drip went up easily enough. A young nurse, with no epaulets in sight, approached to administer it.

   “You aren’t going to practise on me, are you?” I asked her nervously.

Turned out though that she was qualified, just young. She inserted the needle really s-l-o-w-l-y, but very accurately; I barely felt a thing. Unfortunately, she wasn’t quick enough with the cap, and a gush of warm blood ran down my arm.

   “My bloooood,” I said mournfully, but in a tone that was meant to make her laugh.

She did laugh, and I told her that she could do it for a living (put drips in, that is). She seemed very pleased with the compliment.

So now I’m home, with plenty of adrenalin pumping through me. I’m trying to restrain myself from cleaning the flat from top to toe because if I do, then I will be super-pooped tomorrow. As it is I’ll probably crash on Thursday. I will apologise in advance to Michael for being ratty. The thing is, though, in my defense, I never go looking for trouble when I’m feeling like that. But I become much more assertive and if trouble comes looking for me, then I let it have it. *Trouble* seems to have a slow learning curve. LOL.

I’m glad I got the cortisone treatment over and done with. I’m so through with agonising over that decision. It’s a no-win situation, but it is especially no-win if I torment myself about it for ages before hand.

My two worst symptoms had pretty much cleared up after the 1 gram dose. I had that bad cold, so I had to delay the cortisone for fear of developing a really bad infection. In that time, my breathing eased right up and my eyes made a courageous comeback, though I must admit they were still sensitive and easily strained.

But. My legs/feet and hands had gotten way worse. This freaked me out for two reasons. A) I don’t want to lose the wonderful independence of being able to drive our car, and b) I really didn’t want to lose the wonderful ability to play the piano. I have been so very busy on my keyboard lately. I decided that I want to be a serious ragtime pianist, ala Scott Joplin (huge fan of him, always have been). So two weeks ago, I tracked down the (free, copyright expired) sheet music of The Maple Leaf Rag. I wasn’t convinced that I would be capable of playing this fairly advanced music, what with the numb fingers and all. But I gave it a go and found out that, though challenging, it wasn’t quite as hard as I had thought. I became half obsessesed with it, playing every opportunity I got, till my poor left hand was kaput and just couldn’t any more. So now I’ve got the first movement sounding pretty good, if a bit slow. With the frustration of my fingers getting increasingly numb and fumbly, it was actually a no-brainer to go for treatment. So now I will just wait with bated breath to see if it works. Please let it work. (In the mean time, I will be learning the second movement. Maybe one day I can add to the list of people already playing the Maple Leaf rag on Youtube).

I’m seriously thinking of doing my grade 7 piano exams at UNISA next year. I actually did do all the preparation the year I left school, and then my music teacher at the time made a screw-up with the registration and I pitched up for the exam, only to discover I wasn’t registered. I was so  mad about that. So it’s like a little unfinished chapter in my life. It would be kinda great if I could do it now. All depending on my fingers. Hang in there, guys!

Whoa! I’m actually starting to feel a little short of breath again. I think it might be a side-effect of the steroids, though. What an ironic bummer. What it’s supposed to be treating is a friggin’ side-effect!

Written by Maggie

August 19, 2008 at 11:39 am

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