Archive for February 2009
I went to hospital today and got my 1 gram solu-medrol.
It didn’t go too badly, apart from the butcher nurse that put my drip in. She decided to put it in my hand. She really hurt me, and I let her know about it. So she started making a whole lot of excuses for why it wasn’t going in easily. I was so thin, she said, and my hand so bony.
Well, why did you put it in my hand then, if it’s so bony? I thought. (They usually put it in my arm, no problem).
I didn’t say it though, because why would I want to p*ss off the nurse that is sticking a needle in me.
What I also didn’t say is that no-one else ever has any trouble getting the drip into me. I have lovely, plump veins, always have.
When she was done and the blasted thing was up and running, she admitted that she had used too large a needle and that she could/ should have used a smaller one. Gee, thanks.
My hand is feeling sore and bruised now.
Also, my kidneys are feeling it. A burning pain in my back.
In general, though, not too bad.
My body is feeling tired and sore, but my mind is so wired! Full of energy I am, mentally
Tomorrow we are going on a little trip so I hope I can calm down enough to get some sleep. We are staying in a hotel tomorrow night, big family outing to celebrate my parents-in-laws’ ruby wedding anniversary.
Bluebeary will be sleeping at the local SPCA, which takes ‘boarders’. I hope it’s not too much of a culture shock for her. On the other hand, she’s very social, so might enjoy the ‘outing’ and will probably have a nice chat to the dogs on either side of her cage. The cages are big, not really cages at all. More like enclosures, plenty of space for the dogs to walk around in. I’m sure she’ll be fine. She’ll probably miss us less than we will her
I am so excited about my piano exam that I will be sitting in April. Tonight I chose the second of my four pieces that I will be playing. It is the List C (Romantic era) piece and when I heard it for the first time, I fell head over heels in love with it. I can’t wait to start playing it. It is called Of Br’er Rabbit from The Fireside Tales, by Edward Macdowell. Apparently, it should be played ‘spirited and with humour’. Sounds like my kind of piece.
I have made the decision not to accompany Michael and his parents to the Cape this year for the Argus Cycle Tour. I battled with the decision, and then it just kind of ended up making itself.
I can’t really afford a week away from practising if I want to sit the exam in April, which is frankly a bit ambitious. (Funny thing, I still can’t do up buttons properly as a result of lack of sensitivity in my fingers thanks to MS, but I can play the piano well enough to think that I can maybe pass a grade 7 exam with only two months preparation. Hmmm.)
I certainly hope I pass it because it is setting me back R440 this month. Ha ha, if I lay off chocolates this month it should balance out.
Back to the Cape trip:
Then there’s my mini relapse that I just had. I don’t really feel that enthusiastic at the idea of gallivanting around in the Cape. I feel enthusiatic about getting some rest.
Plus, I was in the Cape last year. My memory is still fresh
I will miss Michael, though. He will be gone for a full week, which is I think the longest we have ever gone without seeing each other since we got married. One of the longest stints, anyway.
But at least Beary doesn’t have to go to the SPCA for a week, which is an added bonus of me not going with.
Gonna go and lie down now next to Michael and hope that the Sandman comes along to help me sleep. I fancy my chances better at home in my own bed, with my own nice firm mattress, than if I had to spend the night in hospital. I can never sleep properly there. And if I ever do manage to fall asleep, it’s only to get woken up at 4:30am or some such ridiculous time.
For a cup of tea, lol.
I am not a Star Wars fan at all. But I have to just say that my poochie is starting to look more and more like a Wookie! lol.
Happy 40th wedding anniversary to my folks-in-law. We just spent a very pleasant evening celebrating it with them.
As for the relapse, the decision has been taken out of my hands, if you’ll pardon the pun.
MS has abruptly upped the ante and I am left with no doubt as to whether or not I should go for a session of IV steroids. The answer is YES.
My legs feel freak-out weird. Legs should not buzz.
And my right hand is feeling ‘dumb’ when I practise my exam pieces on the keyboard. (Did I mention I am registering for my gr7 piano exam at UNISA at the end of this month? Finally, after waiting 11 years to finally finish it).
I also have a bit of the ‘MS-hug’ thing going, where you feel as if your chest is being constricted by a tight band.
So off to hospital I will go tomorrow. Same procedure as every year, James.
Do I feel upset about it? Not at all.
I feel worried about possible side-effects, as always, and getting a IV drip put in is never fun, but otherwise I am totally okay with the whole thing. Even the relapse.
Not like back in the good old bad days, where I would kick and scream and bite against the bit every step of the way.
I was in denial about my MS for a long time.
Not that I would have admitted it. I was in denial about being in denial. Hah.
Now I have finally found a modicum of acceptance, and it is so liberating!
I actually would like to do a longer post on this topic, just not tonight. I better get some sleep because for damn sure I won’t be getting much of it tomorrow night after the ‘roids.
Wish me luck.
That’s me today.
The relapse is revving up quite a bit. It’s mainly in my legs and is very disconcerting. All tingly and numb and goose-pimply in patches. Also, invisible wedgie is back in town, but frankly that is the least of my worries.
Should I ride it out? I did feel out of sorts in January and was forced to wait before treating with steroids as I had to do the MRI scan this month, and that would have totally skewed the results. And in the interim, things improved quite a lot. Mostly went away.
But now it’s back and more aggressive this time. Should I wait and see if it backs off again, or what?
This is unchartered territory for me. Before going on the trials, my relapses would never just back off on their own, but now they seem to be doing just that. Sometimes.
But I have been so traumatised by what these relapses can do in the past that I am loathe to just wait it out.
Let me just say once again, why can’t MS come with an instruction manual? I’m sick of winging it!
I know, I know – I’m supposed to blog on a Sunday, otherwise I’ve got no business calling myself a Sunday-blogger.
However, I ran into some difficulties. Firstly, our internet connection was off more than it was on this weekend. Secondly, I was trying to upload the cutest video to YouTube. It took me ages and for some reason I just couldn’t get it to upload. It kept saying: Success, your video is uploading. But then it would hang and hang and just never actually finish uploading. I’ll give it another stab but I’m not holding out much hope.
Then there are the photo’s on Michael’s cellphone that I still need to send to the PC. Sundry photo’s of roses and Bluebeary. You know, the usual, lol.
On the news front we went to JHB last Tuesday for a quick scheduled trials’ visit. A four-hour round trip for a 15 minute (if that much) appointment. Tedious, but I’m in no position to complain, so I won’t
What was nice, though, was that we were able to go and visit my granny at the retirement home. Turns out it is not so far (4.3km) from the doctor’s consulting rooms. It had been her 86th birthday 2 days previously, so I could take her her prezzie (a rose-bush, what else?) and also see where she lives for the first time.
We had a really nice visit there. My granny is so impressed with Michael. She told me later he is such a good conversationalist and so tall
(She has obviously met Michael many times before, but she really appreciated it that we came to visit).
We walked all around the grounds of the old-age home and they are quite beautiful. Lovely gardens and very secure and tranquil. My granny goes walking every single day and is a real example to people half her age! She broke her hip five years ago and was determined to walk again, and now she is determined never to stop, because she says if she stops it will only be a matter of time before she can’t anymore. And when I say she goes for walks, I’m not talking about a short stroll, either. It is a big place and she goes all around it.
When we got back to her room, which is lovely and opens up onto the garden, she showed us the scrapbook she is making for little Sarah-Kate. It is so beautiful! I’ve seen some real amateurish scrapbooks before and this was not one of them. I should have expected nothing less, because my granny has always been very arty and a perfectionist. It is really stunning and well thought out and I think Annie (and Sarah-Kate when she is old enough) is going to love it.
Just outside the building, on the grass, came and sat a whole lot of pigeons, waiting for the old guy who feeds them. I have never seen pigeons lying on the grass like chickens sitting on their eggs before. So cute. I was very taken with the whole set-up.
Speaking of Sarah-Kate, that little madam caused a real stir at the old-age home when Annie took her there on my granny’s birthday. Everyone just loved her, and she put on quite a show for them.
She is walking all over the place now at the grand old age of ten-months. Can’t wait to see it for myself. She is such a special little one.
As far as how I am feeling on the extention phase? Well, I feel exactly the same still. I never did treat the mild relapse that I had just after Christmas. It had abated somewhat but a couple of days ago it started up again. It is affecting my right foot and right hand which I am less than thrilled about. Not sure what to do about it, but don’t think I’m ready to treat with steroids just yet. It is not bad enough to warrant that. Bad timing though, as always. Not too worried about it at this point. I’ll take it one day at a time.
Right now I have to go and tackle a mini-mountain of weekend dishes before Michael comes home for lunch and can see how sleg I am on a Monday morning, hehe.
Firstly, a picture of the pooch – she has gotten so big…
This photo was taken with Michael’s Nokia N95. Not bad quality for a cell-phone camera, is it?
I have been missing our HP camera furiously. I think its problem is just that it needs new batteries, but that will have to wait till the end of the month. Damn expensive rechargeable batteries. Right now there are more pressing financial obligations to be met, such as a servicing for our car (which is due) and the renewal of the golf membership fees. I motioned for that to be struck off the budget, which was not well received. Ha ha. I was only joking though! Golf is important to our collective health ’round here.
Anyway, my rose bushes have been blooming most beautififully and I haven’t been able to capture it on film. Until it occured to me that a cell-phone camera pic is better than no pic at all. I am actually really impressed at how nicely they came out.
I came to the realisation that my love for roses is hereditary and has been lying dormant till now. My grandfather on my father’s side was a rose-lover and fundi. And my granny on my mom’s side had the most beautiful rose-garden. I remember as a young girl being given a guided tour every time we visited there. She knew all the names of her roses and I recall being quite enchanted. Us kids would eat broad-beans straight off the stalks and my granny would always give us strawberries from her strawberry-patch, with sugar dusted on top of them.
My granny is 86 years old today. And frankly, she’s quite fabulous. She is one of the most stylish ladies I know and is an example to me of how a woman should age. She’s modern and fun and I love her to bits. She has recently taken up scrapbooking, and is making a scrapbook of photo’s of little Sarah-Kate (Annie’s babe). Isn’t that just priceless. Imagine having a scrapbook of your first year made for you by your great-grandmother.
What follows is the result of a photo-shoot in our garden, by Michael.
Bluebeary and I. I had to crop this photo quite drastically, because I was flashing quite alarmingly ;-p
Bluebeary next to my Burning Sky rose. This rose is so vivid that it looks as though it has been superimposed on the photo. But is wasn’t.
Here is a shot of it on its own.
And this coral-coloured lovely is the Esther Geldenhuys rose. Esther is a South African rose fundi of note and wrote a number of best-selling books on the topic.
This dainty beauty is called the Pearl of Bedfordview. Michael took this photo, too and looking at it now, I am enchanted by the lacy shadow cast on the wall behind the rose. I think this photo is exquisite and am pretty impressed with the N95′s camera feature.
Poochie and I posing for a photo with Esther Geldenhuys! This could be my favourite photo EVER.
This one is the Red ‘n Fragrant rose, and it sure lives up to its name.
Sitting among the roses in the corner of the garden
Till next time then ^-^
The appointments that I had in Jo’burg last week for the fingolimod trials that I am on went very smoothly indeed. Everything went according to schedule and it turned out not to be so bad. Not that I had expected it to be bad – I just wasn’t looking forward to it because it is such a schlepp and we had to leave Bluebeary alone at home overnight.
This is a pretty poor attitude to have after all these trials have done for me. I am ashamed :-p
Anyway, we had quite a dream of a day. It was smooth-sailing as far as the traffic situation in Jo’ies went. We didn’t even have to slack down on the highway, nevermind sit in traffic for hours. (Although we did do a fair amount of sitting the next day, but it wasn’t too bad. well, not if you consider two hours in traffic for a 26km trip as being ‘not too bad’, but anyway).
First stop, the insurance company’s neurologist so I could have a check-up regarding my eligibility for another year on disability pension. That went smoothly enough. Actually a very sweet guy, the neurologist. I have revised my opinion and decided that I like him. For the first time, we didn’t have to wait for our appointment. At All. Nice.
Then across ‘town’ to the skin specialist. Now, him I really like. He is a fun doctor and he even burnt off my hated wart that I have on my finger for me on the trials’ tab. He also pronounced my skin as ‘very good’ (he did spoil it somewhat by adding, for your age, lol. Eek, apparently 29 year old skin can have quite a lot of sun-damage already. But mine not so much. Yay!) So all good there on the ‘risk for melanoma’ front.
Next, pulmonary lung-function tests. Sailed through them all. Results were better than the previous times but the doc won’t believe me that it’s because I am now employing diaphragmatic breathing principles. But actually that is why.
After that, the dreaded MRI scan. Which really wasn’t so bad, because by then I was half dehydrated, so didn’t have to worry about the need to pee while stuck in a magnetic tube Had a nice slice of lemon-meringue pie just before which also helped. I am the kind of girl that is bolstered up by chocolate and desserts, not alcohol. Unless the alcohol is in the dessert, ha ha. I was largely annoyed by the technician at the x-ray department, though. I had to have chest x-rays done. First they wouldn’t give me a lead shield for my thyroid (because it ‘got in the way’. Bloody hell, my thyroid is nowhere near my frikkin’ chest!
Then they moved the platform on which I was precariously balanced (with remote control) with no warning whatsoever and I nearly wiped off.
And then they muffed the x-rays so that they came out too dark and I had to do them again. I was pretty narked about that! Especially after they tried to get me to pay for them, too. I pay for nothing on these trials, the pharmaceutical company foots the bill. If it were up to me, I sure wouldn’t be having chest x-rays done. The MRI scan went straight off to Switzerland, as always. But the cool part is that now I am on the extention phase, my neurologist (the co-ordinator of the trials) will be privy to any future MRI’s I have done. That is going to be a huge bonus. Not really sure I want to know what my brain looks like though.
Finally, off to the Opthalmologist. What a sweetie. We got there early and he squeezed me in so we could be done earlier. I got the all-clear from him, too. No Macular Oedema (potential side-effect) and eye-balls looking okay.
By this time, it was nearly five o’ clock. Fortunately, we had made arrangements to sleep at my sister and her husband’s place. We were stuck in traffic for a good hour, but at least we didn’t have to go all the way home, only to leave at 5am the next morning again.
The evening was really nice. They ordered in from Luigi’s, the fabulous Italian restaurant down the road and I had the best pizza ever, called a Renata, with grilled seasonal veggies, drizzled with olive-oil, on a margharita base. Fab. For dessert I got a slice of Tiramisu, which I have always wanted to taste.
My sis and her hub were super good hosts, even insisting that we sleep in their comfy bed while they took the (not comfy) air-mattress. And we got to play with the gorgeous little Sarah-Kate, my 10-month old niece. What a cutie.
Next morning, up at the crack of dawn so we could sit in traffic for another two hours to get to my neuro. Man, I don’t know how they do it, the inhabitants of Gauteng. That’s no life, being stuck in traffic half your life. And it’s just getting worse and worse. Michael and I are unanimous on that point (thank heavens) – it is not for us. We are totally happy where we are, thank you very much. I love our home city. It is tiny, as far as cities go, but large enough not to have a small town mentality. I grew up here and have no desire to leave.
Got to the neuro’s, finally, where he told me that he had gotten the results of all the tests I’d had done the previous day (except the MRI) and that everything looked good and I was accepted to go on the extention phase of the trials. Woohoo!! I signed some paperwork giving consent left, right and centre. Seems like the extention phase is set to last another 2-4 years, or at least until the medicine is FDA approved and available in SA.
I then gave blood and did all the usual EDSS tests and functional composite stuff. No change there, except I did muff one of the mental arithmetic questions, thus ruining my perfect score, lol. Apparently it was still a good attempt, so no worries there.
To wrap up, I had to go and have an ECG done, lie in the hospital for six hours being observed, and then have another ECG done to determine if my heart-rate had dropped (it didn’t).
I am now convinced without a doubt that I have been on the medicine all along, because when I started on the trials two years ago, my heart rate dropped an alarming 30 points. It only does that on the initial dose, so no surprises that it was contant when I switched to the extention. (By the way, on extention phase, everyone gets active medication, even those who were receiving placebo previously). The only question now is which dose I am receiving. I thought we would know for sure now, but alas, it is still a mystery. Could be 0.5mg, could be 1.25mg.
I have a slight, largely unbased suspicion that I may have gone up to the 1.25 from the .5 though. (My neuro disagrees, thinking that whichever dosage I was on, it is likely to have stayed the same). I think I might be on the 1.25.
We only got home at 9pm that evening, quite exhausted. Beary was so happy to see us. We were very lucky in that Michael’s parents had been popping in about four times a day to check in on her, so she had been well looked after. (She had to be let out for a pee, because we didn’t want to leave her outside when we’re not home. Amazingly enough, she didn’t mess AT ALL while we were gone. Not one item/ drop of mess. What a fantastic dog.
That evening and the next day I had a mild headache, which is why I think my dosage was increased. I have been a bit tired this past week, too. Could just have been because I was a bit dehydrated, not liking to drink too much water when I’m on the road (i.e. traffic jams) and lying in MRI machines.
All is good now and I’m moving on and happy to still be on the trials. What a journey I have been on these past two years!
Right now I have to go and cook an anniversary dinner for M and I. 8 years married today. The Tiramisu is in the fridge and now I’m going to make the steak and roast potatoes. Wish me luck. I’ll update later in the week on how it went.
Tomorrow M and I are going on a bit of a roadtrip. Not the pleasant kind, mind you.
Tomorrow is the last appointment for the Fingolimod trials I have been on. Yup, my two years are up, can you believe. And what a long way I have come.
We have to hang around in Jozie on Monday night, however, because on Tuesday morning I start the extention phase of the trials. The open-label one. I have to spend six hours in hospital being observed.
We will probably sleep over at my younger sister’s place which will be nice as I’ll get to see her and my gorgeous niece.
Really not looking forward to tomorrow, though. I have four specialist appointments, each one worse than the last, culminating in a MRI scan (complete with contrast dye) and the eye exam. Never get tired of having my eyes dilated and prodded. Not!
I’m trying not to be negative about it, as I know how incredibly lucky I have been to be on these trials in the first place, and now having the opportunity to go on the extention phase. So I’ll just shut up now