Archive for January 2007
As far as my new and improved lifestyle goes, I reckon I’m off to a good start.
Today, I went for the body cleanse ion detox again. With it came the associated energy boost and I was able to do 80 laps in the pool without even breaking a sweat (metaphorically, of course) It was so nice. Draco was there, and he’s getting really tame 😉 He keeps swooping down right in front of me, almost as if he’s egging me on. I’m pretty sure it was Draco, because a) I’ve only ever seen one dragonfly at the pool at any given time, and unless they have time-share in the pool, it’s the same one. And b) obviously I recognize Draco when I see him! But enough about that. I got outta the pool pretty speedily when the thunder started rumbling. A lot of people get killed by lightning in SA (which has the largest number of ‘hits’ of any country, by far) and I don’t intend being one of them.
We had some lovely rain yesterday, and the temperature did drop a bit. It’s still insanely hot, but more manageable. The other day, we rode past a thermometer at a restaurant, outside but in the shade, and it read 43 degrees celsius!!
I went to the hypermarket with my mom today. I was, with the aid of the shopping trolley, gallivanting around like a completely normal shopper. I do tend to get a bit aggro if anyone attempts to take the trolley away from me, though 🙂 I have a pathological fear of running out of toilet-paper, and as we were down to our last bog-roll, I had to brave the teeming masses to secure some. Afterwards, I found it hard to get from the car into the house, a combination of the heat and the exertion. But following Dermott o’ Connor’s advice, I took the emotion out of the negative thoughts I was thinking. Instead of saying “I’m so exhausted/ fatigued/ disabled” etc., I plonked myself down on the couch, said, “I’m just gathering some energy” and listened to my ‘stunning’ classical CD for half an hour and then was good to go. All without the emotionally draining and tail-chasing thought pattern of why the hell do my legs give in when they feel like it? Which is generally followed by a chocolate or some sort of comfort food, which I didn’t need, as I didn’t require comforting. So far, so good. Out with the negative old, in with the positive new. And I do mean super-positive. I’m reprogramming my psyche. None of this old ‘I have ms, I will get worse shit’. No sir. Everytime I am on the internet, out pops another tale of someone who is cured of ms by changes in lifestyle. I see no reason why I can’t be one of them.
I will still be going on the drug trials, because I don’t believe in choosing between conventional and alternative medicine. I say do whatever works. Try it all. And I’ve always liked the idea of having a back-up plan.
I ate well today. Pre-fast prep back on schedule. I had only fruit today, and tomorrow I will make some carrot and celery juice for myself. No-one said this was going to be easy, but that doesn’t mean it can’t be fun. And it is fun, because it’s challenging, and it’s keeping me busy.
I suspect I may have a slight case of PMS. I crapped Michael out for leaving the toilet-seat up (of all things). That is so unlike me. I usually reckon he (or she) who wants the toilet-seat up/down can do it themselves. I also gave him grief for leaving his shoes lying around (lest I trip on them) and for not checking twice that the front-door was locked. Poor guy. I was not my low-maintenance self tonight. Which is odd, because generally I don’t get PMS. Still, don’t feel too sorry for him, because he definitely had PMS last night 😉
I haven’t heard from the neuro’s office yet about the trials. But I’ll be sure to post as soon as they phone.
More exciting, though, my new book came yesterday. The Healing Code by Dermott o’ Connor. He had an aggressive form of ms, and now, eight years later, he is in the best shape of his life. He give his five step recovery plan, detailing how each of the techniques is done. I’m so psyched. He puts it in such a user-friendly manner. Even though not all the material is new to me, he makes it a lot more accessable.
I haven’t been committed enough to becoming healthy. Dermott says that it should be like an athlete training for the olympics. And the ‘prize’ is going to be mcuh better than a gold medal. I’m reading the book furiously, can’t wait to start implementing it.
I used to feel so bad that I’m not working, and bringing my share. Then I realised that the most important job I have right now, is improving my health. Anyway, I don’t cost that much to feed, I’m fasting half the time, lol. (I wish.)
Tomorrow is my next Body Cleanse detox. Looking forward to it.
I’m using my time more constructively now. Less tv and messing around on the internet, etc, and more productive ‘stuff’.
I’m also not going to be blogging as much. I mean, I’ll still be blogging every day, but no long-winded ramblings about dragonflies and otters and shit. More about my (hopeful) progress. That is why I am keeping a journal, anyway. So that I can look back over time and see how far I’ve come.
Today was brilliant. We went to visit at my parents’ house, where two of my sisters were visiting too. We had such fun. My little sis was home from JHB for the weekend, showing off her new car, a Ford Fiesta. We had a lovely time.
I’m not too worried about the side-effects of the trial drugs at this stage because, frankly, ms running unchecked is scarier. I’ll take my chances.
I’ve decided against the idea of a fast, however. If I get accepted on the trials, then the initial dose would be imminent. And to go from fasting, to taking trial medicine, is just plain mad. I could do some serious damage. It’s a pity I’ve been wasting my time, when I could have fasted, as it has been documented that sometimes fasting arrests the progress of ms. Still, too late now. Although if I manage to find out that I’ve been placed in the placebo group of the trials, you can bet your bottom dollar what I will be doing.
I will, however, be able to go on with The Body Cleanse ion detox, which is really doing it for me.
I’ve missed my swimming workout today (and Friday, because we were in Jo’ies). So I hope I get to swim tomorrow.
I’m so glad I’m keeping this blog, so that I can document every step along the way of the Fingolimod trials. I’m hoping it’s going to make for interesting reading.
I’m thinking of going on Ashton Embry’s ms-diet, as I’ve heard so much about it lately. Only problem is that he says to avoid legumes. And as I am mostly vegetarian, I rely heavily on legumes for my protein. But I think I’ll give it a go. There are other sources of protein. I have nothing against eggs, for example. Or organic lamb/ chicken if it comes to that. But I won’t be supplementing extra vit D. Us in SA are getting plenty of it, belive me! (And I am taking a multivitamin with vit. D in).
Yesterday’s outing didn’t involve an evoked potential test after all. What a pity, as they aren’t invasive at all. No, it was a regular eye-exam, and I hate people fiddling with my eyes. Putting weird drops in them, shining bright lights in them. Prodding them! But it’s over now, and the eye-specialist was very nice and kind. I met a lot of nice, kind people yesterday. It quite restored my faith in humanity.
We all waited very long to see the doctor, as he had a lot of emergency appointment. But there was such a cheery atmosphere in the waiting-room. We all said we didn’t begrudge the people their emergency appointments, especially the poor guy who had a stone lodged in his eye from his weed-eater. It was almost a party in that waiting room, we were all having a good time. I’ve never experienced anything like that before. And everyone was singing the doctor’s praises.
M and I had quite a nice day. We couldn’t find Kauia, and probably it would have been very busy and unpleasant. So we stopped at a Wimpy, where we had the most marvellous food. I had a lean chicken salad, and half a banana-toffee waffle, which put paid to my fledging pre-fast prep. But really, after having one’s eyes prodded and blinded by bright lights, a bit of comfort food is in order! I wanted to take a photo of my super-dilated pupils, (as I was fascinated by the look) but I think the flash might have finished me off 🙂
So now I wait to hear from the drug company whether I am going on the trials. The suspense is killing me, lol. In the meantime, though, I am reading the literature the doctor gave me, and I alternate between being excited and freaked out.
The benefits sound amazing, and no injection, which is marvellous. I remain a little bit convinced that my hip problem was helped along by one of those injections, as that is when it started.
The side-effects don’t sound too bad, either. In phaseII trials, the people were given two potencies of the drug. 1.25mg and 5mg. The side-effects in the higher dose were quite a bit worse, without having greater benefit. So they have deduced that th 1.25 dose if already at maximum dose for benefit. Now, with the new trials, they are splitting the dose 1.25mg and 0.5mg. Should be interesting. At least I don’t have to worry about the side-effects on the 5mg dose!
Side-effects include minor infections (like colds) heart-rate reduction after initial dose, increase in liver-enzymes, for the first six months, slight rise of blood-pressure, headaches and diarrhea.
I generally take medicine well, without side-effects, but I had a hell of a time with the Betaferon injections. Couldn’t stay on them it was so bad. So I’m really hoping that I tolerate the meds well. (I’d hate to have diarrhea and headaches for two years!)
There is, however, a possibility of more serious side-effects. A two year study on mice (which is roughly their life-span) showed that some of them developed cancer of the lymph-nodes. That is scary. And last night, I read that the organizers are on the lookout for PML, a rare and fatal brain disease caused by the JC virus. I nearly went ballistic, reading that, as I was convinced it was mad-cow disease. (I later found out that that is CJ (creutzfeld Jakob, not the same thing). But it sounds pretty similar, and it is fatal. There had been no occurences of this on the Fingolimod trials, but they are doing regular blood-checks to monitor it. I have to say, these trials are being conducted with utter professionalism. I am very impressed by how thorough they are being in the safety-checks.
Anyway, in the Tysabri-Avonex trials, there were two documented cases of PML (Progressive Multifocal Leukoencephalopathy). Apparently, the JC virus is picked up by many people in childhood. It does no harm , however until the immune-system is (severely) compromised, such as with AIDS or immuno-modulating drugs, such as those used for ms. It is exceedingly rare, so I’m not too worried about it.
And of course, the drugs I do use, (that would be the ‘roids) have well-documented longterm side-effects, and they ain’t pretty.
That’s about all at this stage. I’ll post again about this when I get the call and find out if I’m on the trials.
Edited to add: In the restaurant, there were 3 blind people with their guide-dogs, and they looked so cheerful and happy that I felt ashamed of myself, complaining about my dilated pupils. At least I could see my cheeky husband’s face over the table. We had such a nice time, actually. We never run out of things to talk about to each other. We spoke, as we do roughly once a month, lol) about how wonderful the night we met was. It wasn’t love at first site (we became friends first) but there was an instant connection between us. I’ve never experienced anything like it, before or after. We spoke as if we were the only two people at the table (there were five of us) and the others weren’t speaking at all. It was as if we’d known each other for ten years.
He didn’t phone me after that (nor did I phone him). It was actually his good friend that was the medium of us meeting up again, as he asked me out on a date or two, and I got to see Michael again. Once again, we spoke as if we were the best of friends. Not long after that, we began dating, and were married seven months later, nearly to the day of the date we first met. And it’s been good ever since (understatement of the year!)
It’s been a long day. I’ll post full acount tomorrow, but right now, I’m going to bed. Also, my eyes are a bit sensitive. The eye-exam went well, but the doc put drops in my eyes to anaethetize them and dilate my pupils. Not pleasant, that. I couldn’t see properly afterwards, and my pupils were so dilated that you could barely see any of the iris, just the merest blue outline. My eyes were pitch black, it was weird. I looked like a drug-addict.
Anyway, they’re back to normal, but feeling a little tired. No small wonder!
We did have quite a fun day, but more about that tomorrow.
I had such a nice afternoon.
Well, it didn’t start off so nice, actually. I was sitting here, in front of the pc, minding my own business, aware that there were workmen in the vacant flat next door, fixing it up. Didn’t bother me at all. Until. They sprayed out about 3 cans (seemed like it) of insect killer. It came flooding in the window, and after I closed it, the whole house smelled strongly of it. I could feel a headache materialising from the clouds of the stuff all around me. What a cheek!
But anyway, I phoned Melany, and asked her if I could visit with her this afternoon. She said yes, and came to fetch me on her way h ome from work. We had a great time chatting and visiting and I had a lovely swim in her pool, and was entertained by her gorgeous kiddies.
Kids are so honest. When I got in the car, Jason asked me, “Aunty Maggie, didn’t you wash your hair?” I thought that was priceless. My hair was looking dirty, because I was planning on washing it after my swim, lol. That’s the nice thing about family. You don’t have to dress up (or even wash your hair!) to go and visit them. But that doesn’t mean the kids will let you get away with it. I am so lucky to have such wonderful family.
I started the pre-fast prep today. Just ate raw fruits and nuts. Quite nice actually. I’ll keep that up for a few days, and then see if I can fit in a quick fast before the trials. Michael went to eat at the Pancake Man this avie. That nearly threw me. There I was, eating my grapes (organic, btw, from my sister’s vines) when M announced he was going for pancakes. I wrestled a bit with the temptation of the pancake demon, but fortunately got a grip on myself, and resisted.
Tomorrow we will be going to JHB for the last of the tests needed for me to get on the trials. The evoked potential. Shouldn’t take too long. I’m annoyed that they didn’t schedule all the tests for the same day, but apparently the doc in question was on leave, so I’ll forgive him.
I hope there will be time for us to go to Kauia (my all-time fave restaurant). Even if just for a smoothie and a tot of wheatgrass juice.
I’m really not feeling too bad at the moment, even given the crazy-high temperatures. For someone who wanted to take IV steroids before Christmas, I’m doiung all right. As my mom said tonight, I’m far too trigger-happy to take the cortisone. That may be true.
My health is quite stable at the moment, actually. I don’t have unlimited energy, of course, and I have to watch myself carefully, or I’ll take a fall, but other than that, not too bad.