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Archive for July 2008

Part one – the neuro appointment.

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We got reasonably lucky with the traffic on Tuesday, enroute to Jo’burg. Sallied into the doctor’s office at ten minutes to ten, for the 10:00 appointment.

Novartis brought out an update of trial information that I had to sign, regarding the dangers of contracting chicken pox (which is derived from the herpes virus)  while on the trial medicine. I didn’t actually read through it all, just asked the doc to give me a quick brief, but I gather it was to do with the poor trials patient who died after contracting chicken pox, just after she’d treated a relapse with IV cortisone.

Then I had to have an ECG in the extremely chilly room. I think my goosepimples had goosepimples.

Some blood was drawn from my arm – same old, same old.

And I got the doc to write me out a prescription for something that will calm my bladder down. It’s really getting to be too much, this running up and down to a loo the whole time. The thing is, now that I have regained some of my independence, and am able to drive around again, it is bothering me that I have to lurch from public restroom to public restroom on my travels. Not fun, and quite stressful. I won’t bother trying to explain this to anyone who doesn’t have an MS-bladder, but those of you that have it will know very well what I’m on about.

I then had to convince my neuro that I need to treat with a gram of cortisone again. He looked doubtful, but when I rattled off all the symptoms of the optic neuritis that has been plaguing me again, he agreed that I better treat it. It was actually quite funny. I think i’ve trained him well, because he didn’t even put up a fight about the dosage. In fact, when I asked his opinion on dosage, he gave me a look that said, “well, you’ll do as you please whatever I say.” He didn’t say it though. Instead, he said, “well, the 1g seems to work well for you.”

It was somewhat of a triumphant moment. It’s quite unheard of to treat an MS attack with only a gram, but I’ve been experimenting with it for two years now, and find it to have the exact same effect on me as the 5g dosage. It’s rather hard to convince the doctors, though. But they seem to be coming around. As the saying goes: the proof is in the pudding.

I read a quote in a magazine the other day. I can’t remember it properly, but the gist of it was that we should all take a vested interest in our own healthcare, and not just hand it all over to the doctor with implicit trust. They are also just human beings. And who knows your body better than yourself? It should be a matter of teamwork. We enlist the doctors help, but that doesn’t mean that we can totally hand over the reins of our health to him/ her.

At this stage, the second neurologist came in and took over. The trials are double-blind, if you’ll recall. I then had to run the gamut of the EDSS and functional composite tests, which went better than ever before. The memory stuff went well and so did the placing of wooden pegs in  holes. I could hop ten times on each foot (first time I’ve been able to do this). I could balance with my eyes closed and walk toe-heel, although both were a bit wobbly. Still, no matter, I think it’s amazing that I can do it at all. The best part was when he put that vibrating tuning fork thingy on my feet and I could feel it in both of them. Now that is a little miracle and I’m particularly excited about it. If my feet can start regaining feeling then I can start hoping that I will make a complete recovery! Actually, the doctor mentioned that the trial meds seem to be facilitating remyelination. That is extraordinarily good news, and will be cause for celebration by MS-ers everywhere.

The doc then had to tally all the scores and my score on the EDSS is now 3.5. There aren’t words to describe how pleased I am about that. It has been a goal of mine to drop below 4, something to aspire to. I wonder if I can set my sights to an even 3 now?

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Written by Maggie

July 31, 2008 at 11:13 pm

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Busy day.

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I had a pleasantly busy day today. Gym this morning, and then I drove to my parents’ house after dropping M off at work at 14h00. I spent the afternoon sorting out my old closet in what used to be my bedroom. Long overdue. I felt guilty about it, because my mom has asked me to clean it out and to take what I want a couple of times. Truthfully, I haven’t felt up to it till now.

I had a lot of fun sorting out all my old stuff, paging through school year books, etc. Quite the trip down memory lane, I tell you.

Now all that old crap is in our flat and I have to tidy it up tomorrow and decide what I will keep and what I’ll throw/ give away. It feels strangely liberating to get rid of the stuff that I know I’ll never use again, even though each item that goes is a slight wrench for my hoarding nature. But hoarding is just another bad habit, and one that I am determined to overcome.

On a slightly different topic, today while I was in the swimming pool, my mind was wandering and I started thinking about Marian Keyes’ book that I read recently, ‘This Charming Man’. I don’t know if I raved enough about it, because it really was very good. The Irish politics didn’t interest me terribly, though it was a good story-line. The women-beating by the slimy title character was quite disturbing, as well as the delving into the life of an alcoholic. But what really made the book for me was the charmingly off-beat and utterly hilarious romance between Lola Daly and Rossa Considine, told in the form of Lola’s diary entries. I think it is one of the best love stories I have read in my entire life. (By the way, my ‘entire life’ is becoming quite considerable – I will be 29 years old in January. The first flush of youth is definitely rounding the bend, folks, lol.) So ladies, please – if sharp chick-lit is your thing, be sure to read This Charming Man. And I dare you not to shed a little tear at the end, out of sheer, toe-curling enjoyment.

Tune in tomorrow for my write up on the Fingolimod check-up…

Written by Maggie

July 30, 2008 at 11:15 pm

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Fingolimod trials – update.

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Today was my 11th scheduled visit to the trials coordinator.

I wasn’t feeling at all in the mood for the trip to Jo’burg. Nor was I excited about jumping through hoops for everyone to evaluate my progress.

But as with every other visit, I ended up enjoying it immensely. It is so nice to have my hubby all to myself for the whole day, and a captive audience in the car to boot 😉 I feel like I have spent the whole day laughing. Actually, that is exactly what I have been doing. We have such fun when we are together.

Thanks, honey, I owe you one.

The doctors’ visits themselves were quite nice, too. I know the people quite well already, so we’re all fairly relaxed. I got nothing but good news all round today. More on that tomorrow, though. It’s been a looong day, and I need to get to bed. I must just say that I finally dropped below 4 on the EDSS score. I am now the proud owner of a 3.5!! Yay!

I’ll leave you with some pics of my ‘vampire’ look. My pupils had to be dilated for the eye-exam. These photo’s were taken much later, when we got home, after they had contracted somewhat again. My eyes were nearly pitch black when we left Jo’ies. I looked like a junkie.

(Note to self: must pluck bushy eyebrows, lol)

Written by Maggie

July 29, 2008 at 10:01 pm

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Quotable quote

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“Ever go to an emergency room in South Africa? They’re in no hurry
down there. I saw a plaque over the door that read, ‘Time heals
all wounds.'”
(With apologies to) – Steve Bluestein

Everyone in SA has their own horror story regarding state hospitals. I tell you what, no matter how skint I am, the very first thing I budget for is Medical Aid (insurance) for Michael and I. The hospitals in the private sector are mostly excellent – really first rate medical care. The state hospitals on the other hand are a place you go to die.

Okay, exaggerating slightly there (although there have been cases of people going in for a broken bone and being nursed to death…). But the state of um, state hospitals has been the subject of scrutiny by the media for some time now. It’s enough to give one sleepless nights.

I’ve been on a medical aid my whole life. I was only ever off it for about three months after Michael and I got married. During that time, I began experiencing the first of my MS symptoms and had to go for a series of tests. I went to the local state hospital for a CAT scan. What a nightmare. The nurse that gave me the short drip for the contrast dye actually dropped the needle onto the (grimy) wooden desk, and then before I could protest, she grabbed it up again and shoved it in the vein in my hand. I nearly passed out, firstly from the horror of the unsanitory way she was handling the needle and secondly from the pain as she kept jabbing it unsuccessfully before gaining entry.

The eventual diagnosis: psychiatric treatment for me! As in ‘all in my head’. And they weren’t even right…it wasn’t all in my head, some of it was in my spinal cord, too 😉

I then went to a ‘private’ specialist in Pretoria. I’m not saying the private sector is without fault. They actually subjected me to two lumbar punctures because they botched up the first one. (In retrospect, I should have sued. At very least they should have waived the bill, bastards). But apart from that, the treatment was excellent and I was diagnosed within a week. MS is a notoriously difficult disease to diagnose, but that neurologist was spot on. Afterwards, when I read testimonials of fellow MS-ers, I came to realise that many battle for months, if not years, to get the correct diagnosis and in the meantime they’re usually labelled as hypochondriacs. So I was one of the lucky ones. I shudder to think what my fate would have been in the hands of the state.

Written by Maggie

July 3, 2008 at 2:56 pm

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Sew what?

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I bought a new tracksuit on Tuesday to go gymming in, as the ones I have are looking more than a little ratty. I’m very pleased with it, light grey bottoms and a baby-blue top. Only problem was that the pants were too long for me, dragging on the ground. I really wanted to wear them on Wednesday but can’t sew, even a simple hem.

Well, this was a lesson in self-limiting beliefs. Also, of necessity indeed being the mother of invention. Out of desperation, I decided to give it a bash.

I ended up doing a pretty good hemming job there! I am inordinately pleased with myself about it, too. For two reasons:

Firstly, imagine my delighted surprise when I could not only feel the needle between my fingers and manipulate it as necessary, but I could thread the dainty little needle (a task requiring both good eyesight and fine motor control skills).

Secondly, even though my mom is an ace needlewoman, and her mother was really good at it too, (they made my wedding dress) somehow the sewing gene decided to bypass me completely. Both inclination and talent. (But more inclination). So I have always been chuffed at doing a simple sewing task, because it is stretching the limits of what I feel capable of, lol. I’m always surprised by it.

Back in 2003, I could not even do up the buttons on my blouse, (I bought a lot of stuff with zips that year) never mind thread a needle. It also broke my heart that I suddenly couldn’t play the piano anymore. For a long time, I had to accept that there were things I just couldn’t do anymore. It was quite bad. I remember not even being able to peel an apple or a potato. I never thought at the time that it was permanent, or I would have been very upset indeed.

It may not have been permanent, but it went on for so long that I grew used to it. And as insiduously as it had departed, that’s how subtlely the sensitivity came back. It’s always so nice to realise that I can do something again that for so (sew?) many years was out of my reach.

I still have issues regarding the feeling in my hands and feet. But nowhere near as bad as it once was. I wonder how much I have Fingolimod to thank for this? 

 

Written by Maggie

July 3, 2008 at 10:20 am

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Toddlers…

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…are annoying little people. Can’t trust ’em.

There I was, innocently sitting on a chair, when my two year old nephew undid my pony tail and started brushing my hair for me. The chair was low to the ground, so he was able to reach. I was apprehensive about it, because I don’t really like other people fiddling with my hair. I’m pretty kleinseerig about it.

But he was doing it so gently and soothingly that I let my guard down. As soon as the attention was off him though, and I began chatting to my sister again, I got a ringing blow to the head with the hairbrush. Actually saw stars there for a moment, lol. Little bugger.

Toddlers can seriously be glad they are so cute.

If they don’t get what they want, that cutesy little facade comes crashing down and a screeching tantrum ensues.

My sister (now living in Australia) remains my mothering hero. When her daughters were toddlers (they are nearly exactly a year apart in age) they threw a collective tantrum in the shops because she didn’t want to buy them crisps. One of those real, thrashing-on-the-floor, vloermoer types of tantrums.

Well, my sister got down on the floor and proceeded to throw a tantrum of her own, complete with heel drumming and screechy bawling.

The girls were so embarassed that they stopped their tantrumming on the spot and just walked off. And they never tantrummed again. I just love that story.

Toddlers – gotta love ’em. Just don’t let them near your head with a hair-brush.

Written by Maggie

July 2, 2008 at 5:46 pm

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