Archive for October 2009
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).
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.
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 🙂
Damn. I’ve just half crippled myself by banging my knee into a chair. It is throbbing like hell and it’s been about two hours since it happened. It’s so bad I may have to haul my trusty walker out of the closet and dust it off. Hope I didn’t do some serious damage.
But on to the photo’s…
Beary, as I think I mentioned previously, had her Summer-cut at the doggy-parlour a couple of weeks ago. She doesn’t look quite herself but I can tell she feels a lot better. I think the heat was starting to get to her.
Check out the before and after’s 😉
Peeping out of her look-out post. This will always be her best look, but we have to take the heat and that thick coat into consideration.
Princess Beary. How regal.
And now for the after pics….
I do not look like a shorn sheep! How dare you?
(We did not know the dog was so grey underneath. Kinda cute though.)
Just as cuddly as ever.
Notice how green our grass is looking in this pic. The only good thing about the hail was that it dispersed all that sh*t manure and brought some nitrogen for good measure. The grass is growing like no man’s business!
And allow me to leave you with a photo of this extraordinary sunset, taken by Michael with his N97 from our backyard. Quite something!
My dad gave me copies he made onto a DVD of old home videos he took when I was a kid.
I was very camera-shy as a teen, a fact which I bitterly regret now. My dad had his work cut out for him getting any decent footage of me. And now those videos are like precious gold. I would love to have more, but I have only myself to blame.
He took one exclusively of me playing a sonata on the piano, either Mozart or Beethoven, I’m not sure which. I have absolutely no recollection of it but it is a long and intricate piece of music and I played it by heart. Must have been an exam piece. Sjoe. I was impressed. And it was interesting to see by pre-MS piano playing. Now I have something to bench-mark my current playing against.
I have heard it said that we never appreciate our youth while we have it. Pretty true. My body was so strong and healthy back then. There are all these shots of me prancing around all over the place. And I was quite buff, from all the athletics, I guess. Calves like I would pay good money to own now, lol. A bit heftier, too. Not so fragile and skinny-looking as now. Also, without the muffin-top, hehehe.
I was so taken with the whole thing that I took a couple of photo’s of the video straight off the tv. (I do not have the converting equipment to do a proper job on the computer, so I thought I’d do a couple of DIY stills to share on my blog).
Here I was all of 17. A split second of footage before I hid my face away. So silly. (BTW, that is not my middle finger,lol)
Here we were on holiday and I had my nose in a book, as always. But just look at the sulky teenage face, lol.
Home movies are so important. These are over 12 yrs old. We can’t remember detail like this. I remember now how I’d always wear my hair in a french plait and cut-off denim shorts.
Feeding the seagulls chips at the wharf.
With my mom and sister.
Contemplating something in the water, obviously 🙂
What wonderful memories. I got quite emotional watching the videos. I think I must say a huge thank you to my dad for taking them, especially since I was being so unco-operative,
I never thought I would enjoy gardening this much! I never struck myself as the type 😉
I waited all Winter for October, the rose month. I counted each bud that was formed with glee. (By the way, don’t count your buds before they hatch bloom, take it from me).
Last time I counted, they tallied at roughly 150 buds. Probably more.
Then came the hail storm. Some of the bushes were really roughed up. At least the ten or so in pots behind a wall were largely untouched. But all in all, rose-month was severely diminished. Still, they are rallying nicely now, and I expect there will a nice flush at the end of the month, or beginning of November. And there have been lots of nice blooms anyway and none of the plants were irreparably damaged.
I was lucky. A lot of people’s gardens were completely annihilated, with barely a blade of grass remaining. I just had a bit of a setback, but nothing too catastrophic that would break a fledgling gardener’s spirit.
Apparently, the hail brings nitrogen to the soil, so what it doesn’t kill outright, it does make stronger, true to the old adage. The new growth is quite impressive, I must say.
Last week, I did that stint as an interpreter for that young girl doing her grade 4 Royal schools piano exam. I was fairly nervous before, as I’d never done anything like it, but it went really well. It was interesting to sit in on the exam and I didn’t actually need to do much translating as it turned out. I think I was helpful in calming the student down, at least. I joked with her beforehand, and during the exam shot her encouraging smiles. She played liked a star, I think she will do very well. Maybe even merit, I think.
Anyway, I was paid R100 for it. Like I said, I wanted to buy a rose with a musical-sounding name, and had settled on Harmonie – a beautiful-smelling rose of a strong coral, salmon colour. I did a search on the net to find photo’s on Flikr of this rose. I typed in Harmonie rose photo’s which usually yields good results. I hit enter and hundreds of links appeared, to my surprise. And not only photo’s, but videos, too, which had me flummoxed. I wasn’t quite sure what a video of a rose would entail, but I was game to find out. But just before I clicked on the link, I read the ‘blurb’ on it and made the connection.
Harmony Rose is a popular porn-star. Hahaha. What are the odds?!
But like I told Michael, “Um, I was just looking for photo’s of my rose, hey.”
How was I to know a porn-star would have such a classy name, lol. Harmony Rose indeed.
Yesterday I went to buy my rose. Far from putting me off the rose, I was even more adamant to buy it, since it now had such a classic story behind it and was commemorative of my brief stint as an interpreter 🙂
When I got to the nursery, there it was. Wait, let me go and take a photo of it…
And a close-up (courtesy of Nokia N95):
The guy at the nursery told me that they had a huge amount of hail-damage to the their roses. They actually lost the whole lot and had to get new stock.
Michael remarked afterwards that they should have sold those roses at a very reduced rate. Even if they were knocked down to the ground, they were likely still salvageable, if given some TLC.
But the funniest was the way he put it: Kom hael vir jou ‘n special!
I can’t possibly translate how funny this is to non-Afrikaans speaking folk.
And here is the lovely Miss Rose herself (courtesy of Wikipedia). I’ll leave you to decide whether she is as lovely as the flower.
Michael says my ‘award’ was spam-generated. He’s probably right.
Do I care? No
Will I be taking it down? Hell, no. I like it. It looks good on my blog 😉
Sometimes we go visiting my parents or Michael’s parents, both of whom have dogs.
When we get home again, there begins a sniffing frenzy of note by Beary, sussing out where we have been and who we mingled with. Of the canine variety. Very interested, sniff-sniff-sniff.
So while Michael was being interrogated by means of sniffing (insniffigated, if you will), he jokingly told Beary, “Yes, sorry Beary, but I have been seeing other dogs – I’ve been cheating on you.”
To which I added (brilliantly), “Beary, your daddy’s been having an af-fur.”
I thought that was really a top-notch pun! But Michael could hardly be bothered to twitch a corner of his lips to acknowledge it.
And I’m always kind enough to laugh loudly and heartily at the corniest of his jokes 😀
Anyway, I thought I’d blog about it so I could get some kind comments saying how outrageously funny that pun was.
(I’ll accept mildly funny, too)
Anything, really. Just delurk and say ‘hi’. That’ll be fine, too 😉