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 🙂
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.