Maggsbunny

…Michael left the sweetest comment on my last post…

“You and Beary are clearly the prettiest roses in the garden “

Ooh, that does earn him a brownie point or two.

Just as well, because he lost a few yesterday…

We have a CD in the car with Foster & Allen’s Maggie on it.

I do ♥ that song. When I was a little girl, my dad told me that that song was written especially for me. And I believed it for quite a few years, lol. (I didn’t pay attention to the actual words, just the constant repetition of my name).

Anyway, now I think the words are rather lovely. It’s this old guy singing of days gone by, when he and his Maggie were young. He goes on to say how they  are old now, but to him she is as beautiful as when they were young.

The exact words….

“They say, we have out-lived our time… Maggie,

as dated as songs we have sung.

But to me, you’re as fair, as you were…. Maggie,

when you, and I, were young.“

See, nice, sentimental words.

I turned to Michael and said that I hoped one day he would say that to me.

He replied, “I’ll say it to you right now. You’re not as young as you used to be. You were a young thing when I married you.”

Very tongue-in-cheek.

He’s lucky I found it amusing, or I might have belted the crap out of him. With my 30th birthday looming, I could easily have taken that the wrong way, LOL

I’ve read before that Chows are a somewhat lethargic breed. They’re known for being good apartment dogs.

Beary, on the other hand, is calm enough for most of the day, but every now and then she gets this spurt of energy that needs urgently to be dissipated.

We do take her for walks very regularly. This week has been very rainy, however, and she hasn’t gotten out much.

Now, for your viewing pleasure, is rare footage of the mythical Crazy Beary. Observe how small our garden is, and how expertly she navigates it at great speed, in the rain…and in between rose-bushes with no regard for the thorns:

I have started working on one of my grade eight pieces, Chopin’s Grande Valse Brilliantine. So far, so good. I was afraid I wouldn’t be able to handle the virtuosity of grade 8 level. But as far as I can tell, the main difference between that and my old buddy, grade 7 is the workload, more than anything else. The Grand Waltz is 9 jam-packed pages of sheet-music. Yay! I only hope my fingers don’t drop off after I’ve finished playing that sucker in one sitting.

Actually, therein lies another story of me bragging about how much I have recovered, how much more stamina my fingers have than two years ago when I started this piano playing lark up again. How I only used to be able to play for about 15 mins before my fingers cramped and went all numb and cripple and cried for mercy. But how now they can go on for, like, forever. Well, until I need to take a bathroom break. I wish my bladder would get with the program like the rest of me!

On a less facetious note, I think playing the piano has been therapeutic to me on so many levels but especially in rehabilitating my fingers. There are a lot of theories about remyelination and how it needs to be stimulated by activity to repair. I actually do believe this, and I think this is what playing the piano has done for me.

I hope to sit the exam in May 2010. But shhhh! don’t tell my sister. She will lecture me on how that is nowhere near enough time to do it in.

I don’t care. I’m no spring-chicken anymore, I need to stay on a roll. She was 20 when she did her gr8. I will be thirty. I don’t have the luxury of taking my time on this one. I’ve lost too much already.

Anyway, so I reckon I’ll need 5  hours of practice a day. One hour for each of the 4 pieces, one hour for scales and one for sight-reading and practical musicianship (aural). Not to be confused with ‘oral’ as I was so fond of typing it previously

The amount of work is easily double what it was for gr7, so best I get cracking. I’m doing quite well with the first movement of The Waltz. Maybe I can vlog about it soon. And I won’t even grin at the camera when I make a mistake. M’kay?

Edited to add:

WHOOPS. Good job I am not studying mathematics, because apparently I have trouble counting in multiples of one! Number of practice hours just does not add up to 5, no matter how you look at it. My bad ;-P

Beary doesn’t have ringworm, according to the vet. We don’t know what it is, but it doesn’t appear to be spreading. Just a single little hairless lesion on her skin. I guess something could have bitten her there. Poor poochie – she picked up on it immediately when I didn’t want to fuss over her like usual. (I had ringworm when I was a kid, and I did not relish the thought of having it again). Anyway, now that it doesn’t seem to be infectious,we’re back to snuggling on the couch together, so everybear is happy again. The vet gave me a topical cream to put on the sore and it is working, I think.

I meant to post the draft I wrote about the doctor’s visit I had back in July for the Fingolimod trials. When I went into my ‘drafts archives’ I scratched out only a couple of sentences on the topic. Well, there was more, but it went off on quite a tangent, which is why I never posted it in the first place.

Anyway, here is the bit that was actually interesting: (in purple)

I am apparently down to a 2.5 on the EDSS scale of disability. Now, considering that I started at a 5.5 back in 2007, this is nothing short of my own personal little miracle!

Back then, I couldn’t figure out where that 2.5 had come from, as I hadn’t noticed any difference that would explain it. 2.5 is practically neurologically normal! (Well, normal is a zero, but close enough, hey!)

Turns out I misheard the dude. He’d actually said 3.5, which is what it still is. I’m not disappointed about that, mind you, because I didn’t trust that 2.5. I was highly suspicious of it and thought the neuro had made a mistake. So no harm done. Am looking forward to the day that it really is 2.5 though. Or even a <2!

I’ve had a bit of PMS this week. And don’t hate me, but this is the form it has taken:

I have been feeling completely loved up with everybody. I feel so fond of everyone in my life. They’re all wonderful

Even the ones that ordinarily get on my nerves a bit, lol. (Like some of my contacts on facebook, hah. Now I find their unique sense of humour quite underrated).

I’ve been finding everything charming and witty and beautiful.

Is this a bit weird? Probably.

I have been slightly emotional, but only to the point where I find things touching that I normally wouldn’t.

Michael’s shares have been insanely high

I think the endorphins are starting to wear off now though, because I am a bit more sensitive than normal. If someone doesn’t greet me enthusiastically enough for my liking, I immediately feel slighted and start wondering if they are cross with me.

Hmmm.

And the ones that do greet me enthusiastically enough for my liking, I’m liable to give them a hug if they’re not careful and chat their ear off for ten minutes.

(Actually, I just realised that the week prior to this carry-on, I felt like starting a feud with my neighbours (long story) which I thankfully didn’t.)

Sometimes it’s exhausting being me, lol.

Us women, we just can’t escape the hormones, hey?

Thank you for the kind comments on my last post

I watched my video again and there is only one thing that can be deduced.

I am a total nerd, lol. (Mind you, a brave nerd, for having the guts to air it publicly

Moving on.

Yesterday was a scheduled trials check-up day. We combined it with a visit to my granny, who stays only 4km away in an old-age home.

The trials’ visit went very well. It was short and sweet. Basically just a short chat with the main co-ordinating neuro, and then a quick EDSS check by the other neuro. I came up with 3.5 on the scale, which is pretty good.

He said I am testing neurologically normal on quite a few of the points, and only minor impairment on a couple of others.

What is holding me back from an even better score (with the lowest score being the best) are my bladder issues and  my balance. He says he can notice my balance is slightly off when I walk into the consulting rooms.

I thought it wasn’t actually noticeable anymore but then again he does have a very trained eye and he knows I have MS. I don’t think the general public would notice it while I’m walking around in the shops.

The EDSS is a very broad spectrum test and is not sensitive at all to little changes. So to drop a whole 2 points from where I started in 2007 is fairly impressive. All the staff at those consulting rooms tell me regularly how much I have improved. Which is nice to hear. Nice to be reminded of how far I’ve come on these trials.

The chat I had with the ‘head-honcho’ doc was informative. Last time I saw him, I discussed going off the trials so that M & I could have a baby some time next year. He didn’t say much about it at the time, but this time he told me that he thinks I should stay on this medicine for the long-term. He said that usually on trials such as these, the pharmaceutical company continues supplying the drug to participants until the medication is available in the country where you live. And it could still be a long time before it is available in SA and, more importantly, approved by the medical aids.

Point of the whole story: I would do well not to go off the trials at this stage.

Mmmm, and all the while my biological clock is ticking away like a maniac, lol.

Next year’s worries, next year’s worries…

Then I had to hop on the scale and I am even more underweight than I was last time, clocking in at 47kg, which is very skinny for my 1.68m frame.

Interestingly enough, I still have the muffin-top. Maybe I should do a sit-up every now and then

What I love about that doctor is that he never makes remarks about my weight. He just writes it down and moves on. But even he said yesterday that I should put on a little weight, I’m very light. Light. I was so delighted by his diplomatic choice of word.

He said it in a very nice way and didn’t harp on about it.

He drew some blood from my arm, and I swear, the man is a magician with a needle! I never feel it when the needle goes in at all. When he was done, I said, “that was some quality needlework.”

He modestly said it is because I have good veins.

All in all, a good trip.

I have not had IV cortisone in over 3 months! I tried to get him to approve a course sometime in the future in case I have to treat this very mild relapse (which we agreed probably isn’t a relapse at all) without having to go all the way back to Joburg so that he can document it for the trials.

But the doc is too canny to write me a blank cheque like that, lol.

Maybe the sun will shine on me a little longer and I will not need to treat with steroids in the three months till I see him in February.

Wow, that would be incredible. I can’t remember the last time I had a festive season (and birthday) without a relapse.

Next, we went to visit my granny.

She is looking very frail and old. She had a bad fall last week (thankfully not breaking anything) and has spent a lot of time in bed. I can see it has taken its toll.

We had lunch there and it took her about fifteen  minutes to get to the dining-room with her walker. By the time we got back to her room afterwards, she was exhausted.

She seemed to really enjoy our visit, though. I took her a Just Joey rose plant for her little garden and a mixed CD as she does so love music. I suspect it is one of her few pleasures. I also took her a strawberry plant, which she seemed very taken with.

From her, I got a book called Paws and Listen, which I can’t wait to read. It is by a woman who talks to animals. As in, conversations, as far as I can gather. The woman enthralled the whole old-age home when she came and gave a talk to them on the topic.

After we had lunch, I played on the dining hall’s piano for the old folks. They seemed to enjoy it and gave a nice round of applause when I was done.

I felt very sad when we left. I tried hard not to pander to the emotional thoughts that wanted to go through my head, or else I would have bawled and bawled. My granny looked so tiny and frail. I really love that old lady, and it’s hard to see her battling.

Michael has promised that we can go and see her every time we go to Joburg.

It was a long day. We got home late afternoon. The trip home was in parts terrifying and spectacular. Terrifying because we got caught in a very bad rainstorm. And spectacular because there were miles and miles of early blooming cosmos and sunflowers along the road, once we got into the platteland again.

And the most awesome sunset I’ve seen in a while. This great big red orb of a sun, hanging low in the sky. You could look directly at it without squinting. The sky was rose-pink with masses of white clouds that appeared to be backlit by the setting sun. I’ve heard of clouds with silver lining, but never fluorescent pink lining. Magical.

Lord, thank you for all the beauty in this world, and please help me to add to it, rather than to detract.

I am feeling much better today, which is just as well because I have a lot of stuff to do today.

The tension headache escalated at quite an alarming rate last night and there was not a naffing headache pill to be found anywhere in our house! Why do I only remember about our lack of Panados when I have a headache at night? Anyway, I managed to go to sleep and when I woke up it was gone, mostly. Thank Heavens for that.

Youtube is back online this morning, so the video will be duly posted. I am mildly regretting mentioning it at all, but if there is one thing that I have learnt from watching my dad’s old home video’s it is that, a) no-one cares how you look on home movies, you probably look/ sound exactly the same as you always do to them. Even if you do look/ sound unbearably cheesy to yourself. And b) ten years down the line you will relish watching the footage, no matter how severe the cheesiness factor.

Michael and I were goofing around with this one. I was going to request a do-over because I actually made quite a lot of mistakes (the pressure of having a camera on one!), then compounded it by shooting a sheepish grin directly at the camera Like I said, it was never meant to see the light of day Youtube. But then we got tired, as it was after 10pm on a Sunday night, and abandoned the project. So this is the only one I’ve got. A pity I couldn’t remember the name of the piece when I tried to announce it, but what can ya do, right? :-p

I apologise for the bad sound-quality but all in all it didn’t come out too badly for an amateur cellphone video.

I was totally going to post a really cheesy video of me playing one of my piano exam pieces on here, but having gone to the trouble of getting Michael to take the videos with his N97 cellphone and then going to the even greater trouble of loading them onto the computer, I now find myself unable to proceed. Youtube is down for maintenance and it is too late on a Sunday night to start investigating other options. I will do it tomorrow and then you can all have a good laugh at the prissy, prissy look I have on my face while I’m playing, as well as the hoity-toity voice I use to introduce the piece. Hah! (I have no idea why I put on so for the camera. It is a contrived motion to avoid looking stupid which is backfiring badly, lol).

I have a very annoying tension headache   which has been steadily building all day. I have a pretty good idea that my neck is a bit out of sync, hence the tension headaches. If I turn my neck at a certain angle, I get a jolt of pain running right through it. I guess I need to go to the chiropractor,  which is not my favourite thing to do. I wonder what are the chances that it will go away on its own.

On Tuesday, M and I are going to Jo’burg for a scheduled visit at the trials’ neurologist. I actually never did update on the previous visit, three months ago. Or rather, I never got around to publishing the draft I wrote on it, so I will do that tomorrow, as well as putting up a none-too-flattering video of myself goofing off on the piano

Till then, nighty-nite and don’t let the bed-bugs bite.

(On that note, remind me to tell you about poor Beary’s possible ringworm infestation! We’ll be taking her to the vet’s tomorrow to find out for sure

It was in the back of my mind that there was some significant date in October which I was supposed to remember but I couldn’t think what it was.

Maybe my granddad’s birthday, I thought to myself. But no, it was something else.

Today, it dawned on me. My anniversary of being diagnosed with MS had passed on the 17th and for the first time, I had forgotten it.

8 years since diagnosis. Another2 years added on since my first medically documented symptom (optical neuritis) which tallies up to 10 YEARS. Hectic.

I was told that most people with MS are in a wheelchair after ten years with the illness. And look at me today! Not doing marathons, but sure as heck not in a wheelchair, either.

I was actually in a wheelchair 4 years after my diagnosis for a year. But through the Grace of God and Solu-medrol and Fingolimod, today I am able to walk normally and go where I please. Big nod to those persons in the white lab-coats. If I had had MS before the advent of corticosteroids, I would surely be dead today, so fast and aggressively was my MS progressing.

Anyway, life has gone on and I MISSED MY ANNIVERSARY.

I have been meaning to do a post on acceptance for a while now. Accepting a chronic, life-altering disease like MS.

When I was first diagnosed, I read about this thing called acceptance.

How it could take years and years.

How stupid, I thought. I accept that I have MS. How can I argue with an MRI scan, a lumbar puncture and various other diagnostic tests that had showed I had MS.

Actually, at the time the overwhelming feeling I had was relief. What I was feeling had a name and I was not going nuts. It was not all in my head.

But yes, I accepted that I had MS. Scary sounding, grown-up disease. I had it. Me.

Not for long, though. I read books on how people had reversed MS with alternative life-styles, healthy eating, exercise, supplements etc. I could do it!

I read up on MS all day. Went on chat-groups, made friends with other MS-ers. It was on my mind all day long. It became my identity.

I was floored when my extremely dedicated attempts at reversing MS failed. I got relapse after relapse after relapse and fell into a void. Before I could wipe out my eyes, I was wheel-chair bound, bed-ridden, mostly. Legally blind. It went rough there for a couple of months.

I thought to myself, well, this approach sure hasn’t worked very well for me.

I took a new approach. IV cortisone and LOTS of it.

(By the way, I am extremely lucky that IV cortisone works so well for me, because there are some people who get no relief from it at all).

I had always taken the corticosteroids for a relapse, but I started taking more than was medically advised. Way more.

One is only supposed to have an IV course once every six months. I started taking them every month. I had to switch doctors to even get away with it.

Thankfully, I didn’t get a serious opportunistic infection, which could easily have happened.

That vague term opportunistic infection didn’t scare me at the time, but subsequently I have found out that it can be a death-sentence.

Then came the Fingolimod trials. Best move I ever made and I remain convinced to this day that it was the Hand of God that directed me to the trials. I remember breaking down crying and pleading with God to show me some way… and He did.

I have come a long way since starting on the trials back in 2007. It has happened so slowly, so gradually, that sometimes it is difficult to look back and see the huge progress. Somehow, I am starting to block out the wilderness years. The memories are not at the forefront of my consciousness anymore.

(I remember, for years I coudn’t even walk in my dreams. It was so sad.)

Fast forward to 2009.

I decided to break free of the mold that MS has cast me in. I wanted my life back, even if I did have to make a few adjustments.

That is why I did my grade 7. It was an ambitious dream, having lost quite a lot of feeling in my hands, but I guess it was my way of giving MS the finger. (Pardon the pun).

Now I dream of turning it into a career. The lost career that I have shed big crocodile tears over in the past. I so want to be financially independent.

Not independant of Michael, but bringing in my share. Paying my way.

I plan to start giving tuition in music as soon as the school’s exams are over. And I’m hoping that this will pay the way for me to further my studies in music. Maybe even a teacher’s licentiate in piano and a BMus.

I’m excited about it.

Have I accepted MS? I  think I finally have.

These days, it’s not an all-consuming desire to get rid of it. I am living with it. I have learnt how to manage it better.

I have a healthy respect for MS. I know it can throw a curve-ball that I will battle to stand up from.

But battle I will. In some ways, it still affects a lot of my decisions, especially the big Will we have a baby one.

But it doesn’t rule my life anymore.

I know that the reason I have come to this place of acceptance is because I have recovered so hugely. Even though I still have plenty of remnants from my various attacks, I am living a normal life today.

I know I will have more relapses. I am having one right now. And that is okay, too. I will cope with it. It is not the end of my world, as it once was, just an (extreme) inconvenience that has to fit in with the rest of my life.

I used to think that accepting meant giving up hope and being apathetic.

Now I see that that is far from the truth.

I still want to get well, be as healthy as possible. But in the meantime, I’m not sacrificing my life for it.

I no longer read all I can about MS. I am frankly a bit bored with the topic.

My symptoms are my symptoms. They are what they are and I can live with them.

That is the bottom line – I can live with MS. And I will.

I used to have these really nice lace curtains for my living-room window.

They cost a fortune, as I recall, back when I was still working and earning decent money.

I bought the exquisite lace and my mom made them up into curtains for me, as I don’t possess a sewing-machine (and wouldn’t know what to do with one even if I did).

Enter Beary.

Now, she has never been a destructive dog. But dear Beary loves to jump up on the window sill and peep out to see what is going on outside in the communal courtyard of the complex we live in.

Michael and I were so busy noticing how cute she was and how her tail doubled as an adorable curtain hook (lol) that we failed to notice that she was trashing my pride and joy lace curtains.

And by the time we did, her habit was entrenched in her and we didn’t have the heart to discipline it out of her.

The thing is, she wasn’t doing it on purpose. She’d just duck under the main curtains and put her paws on the window sill but unfortunately her claws got a bit caught up in the lace.

It got to the point where there was a large hole ripped in the material. We got home one day and discovered the curtain wrapped around Beary Bear. She was standing stock still, unable to move, she was so entangled in it. That was the point where I freaked out a bit and took down the curtains. I was scared she’d hang herself on them!

I could never understand how people could let their kids/ dogs wreck their furniture and fittings.

Now, while not exactly thinking it’s cute (I did ♥ those curtains) I can see how one could get to the point of not caring as much anymore about stuff like that.

Anyway.

We went for a couple months with no lace curtains with the result that the outer curtains had to be drawn closed the whole time, which I didn’t care for much. I was starting to feel like a vampire.

Wasn’t going to make the same mistake again, though, so went to town and bought this short café curtain which would be safely out of Bear Paws’ reach.

Only, when I hung it up, it looked ridiculously short. I asked my next-door neighbour’s opinion and she gave me the brilliant idea to get one of those brass curtain-rods that screw outwards against the wall, and just hang the curtain a little lower.

I did just that and it looks so cute.

To finish the look, I got three new rose-bushes (one of which is Harmonie) to stand just under the window. The whole thing looks distinctly ‘cottage-y’. I love it. Even more than the fancy lace curtains that preceded the whole affair.

Beary can jump up on the sill all she likes now without a hope of snaring the curtaining. She has to peek under it  now, which is the cutest thing I’ve seen in a long time