Archive for August 2007
How did I go from being so obsessed with blogging to being so lackadaisical about it?
I asked myself this question and came to a rather unfortunate answer… I’ve been feeling too good to blog. I’ve had precious little to moan/ complain about. I don’t know if this is strictly true or if it has just coincided with my discovering facebook. I suspect the former, however. Blogging has always been therapy for me, and for a while there it was one that I had no need of. But fear not, I have some grievances up my sleeve to get the ball rolling again, lol.
First things first, though. I just have to say how tremendously proud I am of my dad. Last week, he climbed Mount Kilimanjaro, highest mountain in Africa. Also fourth highest in the world, and highest alone-standing mountain in the world! He has a brilliant photo of himself on Uhuru peak (highest point in Africa) holding up his arms triumphantly. It took him six days of hiking to summit and return to base camp. A real achievement at any age, and even more so at 64. But then, my dad’s a very young 64, obviously. He came home with sunburnt lips (from the reflection off the ice and snow) and many entertaining stories to tell us. Unfortunately the weather wasn’t the best. Even though it’s the dry season, it rained for four out of the six days. No guarantees with the weather, hey. But in spite of the rain, he took some really stunning photo’s. What an experience!!
This week, I am into Connie Francis’ Where the Boys Are and also lots of Johnny Cash. Think ‘Ring of Fire’ played four times consecutively, ha ha. M and I are going through a bit of a ‘phase’, what can I say.
Less than a week till his departure to Italy. Yikes! Don’t really like the idea of him being so far from home. How do wives with globe-trotting husbands do it? I guess you get used to it. But I will frankly feel better when he is safely back in South Africa, where he belongs – here with me. I do wish him a wonderful trip, though and hope he acquires some unforgettable memories and has a fab time.
The first heat of an early summer has hit, and knocked me back a few paces. We went to Pick ‘n Pay hypermarket yesterday, and I felt quite pooped afterwards. And not pooped as in, ‘let me lie down for five minutes’. Pooped as in, ‘hey, all of a sudden I can’t walk so good’. I couldn’t understand this, as the previous week I was walking around the big shopping malls in Jo’burg with Michael when we went to apply for his Italian passport. This was quite a dream come true, but obviously the acknowledgement of it was a bit premature. Then I realised the reason for yesterday’s speed-wobble. The heat. Duh.
I’ve gone from loving Summer and hating Winter to the complete opposite. Although, no, I could never really hate Summer, but it does put a bit of a damper on my activities.
That has got to be the one most frustrating aspect of MS. What I was able to do with ease yesterday, I won’t necessarily be able to do tomorrow. At all. I cannot get used to the inconsistency that is MS.
Speaking of the trip to the hypermarket – I could get into some serious trouble going to town without my glasses. While we were waiting in the queue for the till, I read a big sign saying ‘Free Bonking’. Sjoe! This sure wasn’t the provincial town I had grown up in. Free Bonking indeed! What had the world come to? Tut-tut. As we got closer, I saw that the sign actually read, ‘Free Banking‘. Phew. That did make more sense, actually.
I never did get around to discussing the session I had on the Quantec machine. So I will do so now. Basically it was your average bio-feedback session. I found it way better than the one I went to some months back, though. The practitioner is a real sweetie. Interesting things that came up: it didn’t specifically show that I have MS, but it did show up some damaged nerves in my brain. Not cool, but I did know that. You kind of make the connection when you can’t (with confidence, anyway) command your various body parts like you used to.
It also showed up that I am on medication. So, no placebo this time ’round. Unfortunately, it referred to said medicine as a psycho-stimulant with abuse potential. Also that it’s toxic. Oh well, can’t win ‘em all. And show me a medication that isn’t toxic and I’ll show you a placebo.
Most interestingly of all, it showed that I am the proud owner of both radioactive uranium and polonium in my system! Now, I have been convinced for years that it was the mining activities in my immediate enviironment, growing up, that kick-started my MS. And what is a by-product of mining? That’s right, radioactive uranium. I’m like a comic book hero that was exposed to a radioactive contaminent, and now has special powers. My special powers are walking very convincingly like a drunk if I get too hot And, due to lack of sensation, being 100% un-ticklish. If I was ever captured as a spy, they would never get me to reveal state secrets by subjecting me to torture by tickling. No siree. And I used to be so ticklish!
Good news is: I did some research, and it is possiblew to chellate uranium out of one’s system. I did a loto f chellation some years back, but not for uranium. I don’t want to get too excited yet, but I’d be lying if I said I wasn’t holding out some hope that might put a stop to all this BS that is MS.
The Quantec machine itself is supposed to help with detoxing whatever needs to be detoxed. And I have been feeling better. Between that and the medication, anyway. The heat is catching me a bit at the moment, and tomorrow is only the first official day of Spring. But I have improved so greatly recently that I see no reason to doubt that I will improve 100% still.
I really need to do a decent post. But I’ve left it so long that it has become a momentous task.
Biggest news: My BABY sister is pregnant, having a baby of her own! Wow is all I can say. The family is really excited about this. Shame, she is only 23. She seems even younger to me, being the baby sister. But I seriously can’t wait to meet that little one. Her and hubby are still newly weds, but they decided they wanted kids straight away. Wonderfully enough, her MS has backed right off. She is symptom free and I’m hoping that is how she’ll stay. So exciting!!
Michael and I went to JHB today. Not for me, for once, but to apply for his Italian visa at the Italian embassy, and to get his international driver’s licence. It was one of those days where everything just went 100%. We didn’t sit in traffic, our new GPS (on M’s cellphone, Nokia N95) took us straight to everywhere we wanted to go, we had good food – it was just great all round. We met up with M’s brother Mark, who also needed to apply for his visa and driver’s licence. It was a really nice morning.
AND, for the first time in about three years, I was able to walk around the big shopping malls a bit. While Michael and Mark were doing the driver’s licence thing, I had a sandwich at my most-favourite-of-all-time restaurant, Kauia, and even walked about by myself a bit while waiting for them. It was such a fantastic feeling. I know not to push things though, baby steps and all that, but it really did feel good. I need to do a whole separate post on this, and what I suspect is the Quantec machine’s role in my recent recovery. That post is coming soon, watch this space.
But just before I sign off, let me share this funny story. M was riding his bicycle this afternoon, and he heard a segment of a radio programme which went about which songs various listeners played at their wedding. M says it was all the usual overly romantic corny songs that people play at weddings. Then, as a joke, the radio dj played Queen’s I want to break free, saying ‘Who would play that at their wedding? ha ha’
Well, that would be Michael and I. Yep – we played that as the first song of our married life together. And we thought we were pretty funny. Not so much when we had the usual scuffles that people have in their first year of marriage, ha ha.
I know there’s been a shameful dearth of posts from me lately. My heart’s not really in it at the moment (because I’m a facebook addict?). I think up posts in my head but don’t get around to actually writing them.
But because I had a scheduled trip at the neuro yesterday, I thought I’d better update, as I did promise when I started the Fingolimod tials to give regular updates.
Yesterday was completely exhausting. We left home at 5:45am, and only got back at about 7:45 pm. A looong day. I was prodded and poked all over, had to undergo an MRI scan, a lung-function exam, eye-exam, give blood, give urine, have an ECG done, was timed over a 25m stretch to see how fast I could walk it, had to hop on one leg, then the other, do mental arithmetic and memory tests (not at the same time as the hopping, fortunately), put pegs in holes, got asked personal questions - and that’s just the highlights! lol. Holy cow! If these pills weren’t working so well for me, I would have given the whole thing up long ago. Add to that the traffic we had to sit in for hours, and it all adds up to quite a hectic day. I’ve been dreading it a bit, to tell the truth, but at least it’s over now.
Michael – now that man is just worth his whole weight in pure gold! I owe him BIG for driving me around, without complaint, the whole day. Unspoken, I know that my recovery on these trials makes it worth the hassle for him. If you get right down to it, that is what love is all about, don’t you think? The grand gestures of romance, the chocolates (especially the chocolates!) the flowers, and lovey-dovey simperings are one thing. But when it comes to the crunch, true love is about being there for each other, come what may, and doing it gracefully and gladly. That is how I know I am loved.
Aaaanyway, the neuro was very happy with my progress and lack of relapses. (I’m going for five months CORTISONE FREE on the 27th!) I think I am one of the early success stories of the trials. I was among the first three to go on the trials at that particular centre. I think the recptionist and doctors were quite impressed when I sallied in there, without even groping the walls to stay upright. See – progress. I still scored a 4 on the EDSS. Although there has been a lot of improvement, the test is not subtle enough to change to a lower score based on that. It is better than the 5. I had when I started on the trials, however. I’m hoping for a 3.5 or a 3. when I go again.
I was able to hope on my left leg a solid three times, compared to the half a jump I gave last time. On my right leg, I managed one. Probably would have done more on a second attempt. I could balance with my eyes closed for way longer than my previous personal best of one split second, ha ha. I managed a good couple of seconds. The mental test went well, with a score of 100%. I get so stressed with that test, lol, because I’m scared if I let up on my good track-record it will be tantamount to having ms-induced brain damage. The doc said it’s the first time anyone got 100% on the test, but I think he’s full of it because he says that every time. Probably says it to everyone, to mitigate the indignity of having to perform like a trained seal for medical research.
Lung-function was normal, MRI got sent straight to Switzerland, so neither I nor the doc got a squizz at it, it’s purely for the trial administators’ benefit. ECG was normal. The visit to the opthalmologist had a pleasant surprise. I’ve noticed that my eyesight has improved a bit – I can actually make out subtitles on tv now, without my glasses on. Well, the eye doc said my left eye has definitely improved. Yay!
Other news – I’ve lost all sensation in my feet. Well, it wasn’t news to me, I did have an inkling, lol. But it was the first time the neuro came right out and said it. Normally he just scribbles things in his book. He had the tuning fork thingy out again. I felt the vibration strongly when he placed it against my hands, but not at all when my touched it on my feet. I do feel hot/ cold and pinpricks but apparently (I asked) that is a different path in the brain. Oh well. why would I need to feel with my feet? Oh, wait a minute, that’s right – to drive! Damn.
I found it a lot easier to get around this time. I walked up the steps of the medical suite without holding onto the handrails (big milestone, ha ha) and up the ramp at the eye-doc’s place without a glitch. I’m becoming quite independent, aren’t I? Plus, it’s not an issue if we get a parking spot that’s not right next to the entrance. I can walk comfortably across the parking area without being exhausted. What a change!
So that’s about it in a nutshell. I’m stable on the drug and even slightly improved. Viva Fingolimod! Plus NO side-effects. What more could a person ask for? Oh yes. A cure.
I understand they are working on it, though, so let’s all send out hopeful thoughts to the boys and girls in medical research.
If anyone reading this has MS (which you probably do, if you’re still reading this) and would like to know more about the Fingolimod trials, please feel free to ask me.
My name is: Maggie
MAGGIE [Pronunciation - MAH gee]
It means: Pearl
Its origin: Greek
Additional info – Pet form of Margaret.
If you have been tagged, copy and paste all of this – from the image to the end of the instructions – into a blog post. Then, change the information to match your name and tag three other bloggers. If you don’t know what your name means, you can try looking it up on Baby’s Name World.
The cutest thing happened at the gym today. I swam 32 lengths (that’s not the cute part, keep reading). On my last length I saw a little girl on the far side of the pool, waiting for her swimming lesson from the instructor. I smiled at her and said hello. She gave the most shy little smile and said, almost inaudibly, hello, back at me.
I swam back to the other side where the step ladder is and got out. I battled a little, like I always do when getting out the pool (although I have to say, it is getting easier). I walked, leaning on my walker, round the corner to where the ladies locker rooms are. There is a heavyish hydraulic door at the entrance which is a little difficult to navigate with a walking aid. But as I rounded the corner, I saw that the door was being held open for me by my little friend, the girly at the pool. She’s probably about five years old, maybe even younger.
This is not the first time she’s held the door for me, but previously, I thought it was just coincidence, and that she was on her way out anyway. But today it dawned on me that she was especially waiting for me, to hold open the door. She was actually hiding behind the door, I had to peep ’round to see her. I asked her whether she is English or Afrikaans speaking. She answered Afrikaans, and I told her she’s very kind and has beautiful manners. I’m actually sorry I didn’t make more of a fuss and ask her her name. I think when she saw me getting out the pool she ran around the back way, through the gym, to meet me at the door. It’s about the third or fourth time it’s happened. What a little darling. I suppose her mother, who was also sitting there, could have sent her, but I got the idea that it was on her own initative. She gave me the sweetest little dimply smile, and my heart completely melted. Even now, I feel all warm and fuzzy thinking of that precious little madam.
Oh, and I nearly forgot, for more warm and fuzzy feelings, go check out ‘video of the year’ at YOUTUBE.
Mmmm, this will have to be a shortish post. I’ve become a leetle bit of a Facebook addict! Due to it my eyes are a bit strained and I have annoying reflex tears running down my cheeks the whole time. Pesky!
Just had to tell this story, though. We had some electricians in yesterday to check if all our electrics are up to scratch etc as the flats are changing ownership. One of the guys made a casual remark that our flat was the nicest one of all the ones he had worked on. And I’m pretty sure he meant it in the context of cleanest/ most respectable. Well! That was quite a shocker. I wondered briefly what the other flats must look like, ha ha.
Thing is, I am not the tidiest person out there. And neither is Michael (sorry, Honey). Which is actually a good thing. Better that we’re both a bit piggy than for one of us to be completely anally retentive about tidiness and nagging at the other one all day about it. There does tend to be a bit of a scurry if we get unexpected guests (which we seldom do) but not too bad.
But after the electrician’s remark, I looked around our home with new eyes. I had tidied up a bit, and actually, it looked really nice. I’m always apologising for it, but the fact is I really love my home. It’s a bit more cluttered than I’d like (M and I have committed to performing the mother of all spring-cleans when it starts warming up a bit) but it’s got a lovely warm feel to it. The walls are painted a nice off-white, creamy colour and the colours we’ve used, albeit haphazardly, are warm, earthy tones. And our decor may verge on being ever-so-slightly kitsch, but it’s us and I love it. I will never apologise for it again.
I don’t know if it’s because I am maturing (eek!) or if the MS has changed me, but I am quite a bit tidier and more organised than I used to be. I still have the tendency to reset to ‘piggy’ but there’s definite improvement. Especially now that I have a bit more energy. More about that and the Quantec therapy at a later date.
Speaking about energy, I had a quiet day today, and feel the better for it. Unfortunately, my energy doesn’t carry over to the next day, much like free cell-phone minutes at the end of the month So if I have a bit over at the end of the day, I try to use it on some admin task or other.
Last night and this morning, I was upset. Over the little matter of not being able to feel my right leg and toes. This is not so debilitating in itself, but it’s not a very good sign. I have never had a relapse yet that didn’t start with the toes on my right leg feeling numb. I feel better emotionally now. I remembered how far I have come over the past two years and I’m not about to let a little numbness throw me. I’ve dealt with worse. It will either improve on its own, or it won’t and I’ll go to hospital and take steroids for it. I’ve done it many times before. It’s unpleasant, but I can handle it. The last thing I’m going to do now is lose any sleep over it.
Gee, this post turned out to be way longer than I intended. Could be because I haven’t been watching the screen so much, and my eyes got a rest.
On a final note, one of my dear friends (and family member) is going through a very rough patch in her life. She knows who she is, and if she reads this, I’d like her to know that she’s in our thoughts and prayers. I know she’ll get through this, being the strong and determined person that she is. Chin up. We’re there for you.