Friday, March 25, 2011

Latest Neuro Appointment

On Tuesday afternoon I had an appointment with my neurologist.  As I have mentioned previously I really like my neuro.  He answers my questions, and believe me, sometimes when I see him I have pages of questions I have written down, he doesn't sugar coat his responses and I believe he gives me the most up to date information.  In the past I have hand written questions to him and he has always replied and most recently I sent him an email, to which he also replied.  So as a client (I was going to write patient...) I feel respected, heard and that my MS is appropriately managed.

I don't often have afternoon appointments.  Usually I attend first thing in the morning, with my husband, but childless.  However this time I had an arvo appointment, with my husband and kids.  I did have a morning appointment, but it clashed with a lecture at university so I had to change it.  We decided to take the kids, to keep it foremost in my neuro's mind that I am a mum and there's nothing quite like an auditory-visual reminder. 

Let me tell you, afternoons are busy.  My neuro's rooms are in a suite with two other doctors.  There was only one empty seat in the waiting room, so Ryan and the kids stood in the corridor outside, looking in through the glass walls.  While I was waiting I stuck my nose in a magazine.  My kids came in a few times and distracted me, but this just gave me the opportunity to gaze around the room trying to decide who had MS and who didn't.  But as you would expect in neurology rooms its a near impossible feat.  

Eventually my neuro appeared and called my name.  We all bumbled into his room and sat down.  Sabin started whinging and my neuro asked if it was ok to give him some cars to play with - of course it was, unless he really wanted his other clients to experience Sabin’s crescendo peak!

The appointment was really just to see how Mr C is coming along, whether I am happy with the daily injections and how any reactions are going.  Everything for me is fine.  Mr C sometimes stings, gives me welts and itches occasionally but it's improved since I started, when it stung, gave me welts and itched all the time.  The welts are an ongoing thing - sometimes they are very large, sometimes small, but they are always under clothing, so its really no big deal.

We briefly talked about the new drugs available, alternative drugs to Mr C, such as betaferon and whether I would like to participate in a study - a blood test for progressive multifocal leukoencephalopathy (PML), a viral brain infection which can be activated by another drug used to manage MS called Tysabri.  Currently this test is not available to the general population, so I thought why the hell not because if I was to start Tysabri, then I would have a head start on the question of PML.  But I don't currently know much about Tysabri or the test, so that’s all I will say about it.

We talked about my next MRI, which is in June.  We cancelled my follow-up to the MRI, instead making an appointment for December.  My neuro said that he would call me to schedule an appointment if he needed to speak to me about the MRI results.  Hopefully he won't need to do that, because hopefully Mr C is doing his job.  Obviously after the MRI, I will call the office of my neuro and ask for a copy of the results and that way I can email him to my hearts content.

The appointment was quick, painless and highly unnecessary because I am ok with Mr C, daily injections and reactions, but it is probably mandatory for someone who has just started “serious” medication.  So $180 later, Sabin couldn’t even make it out the door with a souvenir.  He did make it to the door holding the cars, but nothing seems to get past my neuro. 

Friday, March 18, 2011

Japan, Earthquake, Tsunami, Radiation and Ignorance

 dear japan
thats what you get for killing the Whales.

from the Whales :)

This is some crap that an acquaintance on Facebook wrote during the week about the earthquake and subsequent tsunami in Japan.  We grew up together, although I was more a friend of his sister’s and he is a few years younger than me.  We haven’t spoken in person since we were kids and obviously if we had I would have slapped him into shape.  One person liked this comment before I wrote:

Hmmm not sure I agree with this... I'm not into killing whales at all, but it's uncool for thousands of people to die and then probably more to die from radiation sickness. PS The Japanese on a whole, in my experience, know very little about the whale/dolphin killings and I speak to a lot of Japanese visitors regarding this. They are just as horrified and outraged as us.

This was followed a comment by a person I don’t know (I didn’t fix up it’s grammar to add to it’s ignorant feel):

Well if that be true, why dont THEY do something about it? . . I think its sad. . , so many innocent people but nontheless they are overpopulated. When is enough enough? I may be rude here but im SOOO glad i live in perth, apart from a few fires and wind damage we and the south west are doing quite well :)

Of course I couldn’t let this be the last word so I added and I can tell you I really wanted to write something a little more “choice”:

Connie have you ever been to an Asian country? In many of these countries the governments hide the undesirable things they do, so the people have no idea what’s going on and can't complain. Yes your opinion is offensive, but you are (unfortunately) entitled to it.

The original poster didn’t say anything further and his next status update was:
lklhjl.jkku8gbhhjjhkbr6hy78rg877y87568ui87u67666t767t6756r56ftrfr5tgt7ygf trrfdce trfryfrtfyftft5rtytrdrdtereerrrrrrrryterryrtytrttreetrsd 6trttrrretfrvftgggvgfgfgtfgrt

Wonder if this was his very intellectual attempt (not!) at swearing at me.

Anyway I have never been to Japan, but we do regularly have Japanese visitors staying with us.  I do speak to them about the whale and dolphin killings and they are truly surprised and shocked.  They are a first world country and to them the killings are an uncool, barbaric practice, like it is to us.  The other thing I note about Asian countries is the young adults are very naïve and appear to know little about the bigger picture.  This is no excuse of course, but if you don’t know something exists or occurs because you are sheltered from it then you cannot do anything about it.

So, my point is just because you kill whales or have a large population, doesn’t mean that you deserve to be paid back by a massive earthquake, tsunami and radiation poisoning.  We have a lovely 21 year old Japanese girl staying with us at the moment.  She was with us, when the disaster occurred.  Her family lives in a neighbouring prefecture to where the tsunami hit - thank goodness they were safe.  She leaves us on Tuesday to return to Tokyo, where she lives. (The picture above is of our current visitor and my daughter.  She also made the cranes in the other pics).

I can truly say I am frightened for her (and all my friends in Japan).  I have asked her to stay here with us, but she is still leaving because her family think Tokyo is safe.  I have mentioned to her that the Australian government is telling it’s citizens to get out of Japan and warning against travel to Japan.  I am frightened because if those, even just one of those nuclear reactors melts down, much of Japan will be subjected to radiation.  You only have to look at how Chernobyl is going 25 years since it’s melt down to know that Japan will be in dire straights if any or many of their reactors go the same way.  If you aren’t up-to-date, check out this article:

The current situation in Japan is frightening, as well as heartbreaking to me.  Many generations to come will be scarred by what is happening now. 

I am unsure if I am partly upset because Australia’s uranium fuels Japan’s reactors. Is it hypocritical that we sell our uranium, but currently don’t have any nuclear reactors of our own and hopefully never will (other than the nuclear medicine, science and research reactor at Lucas Heights which operates with only (!) 30kg of uranium as opposed to 100 000kg of uranium used in electricity generating reactors).

Here are a few emails I have received from my Japanese friends.


thank you for your message.

we and our family are all safe.

but so many people died(it is said over 10000...) and missing..
i am very sad.
my friend lives in the town that was completely destroyed by tsunami
and i still cannnot contact with her and her family..
but i hope they are safe.

in japan the information is so complicated and everyone is very confused.
transportation has stopped.
no water, no rice, no paper, no canned foods and no nappy in shops.

the electricity is running short
so there is a blackout for 3 hours a day in my area everyday.

but i believe we all work together and our country will recover from this disaster.

and we really appreciate all your support from all over the world.
thank you so much.

LOVE from yumiko, kazu, emma and baby.

And another:

Dear Lee-Anne and your familys

Thank you so much for your kindness and emotional mainstay.
I am so happy to get your Email.
And also ,we deeply appreciated a lot of county give us cooperations.

Fortunately,our place is not close from the focus of an earthquake.
So , we start to work from monday.
Bur traffic has been paralyzed in places by the earthquake.
And there are no food in the market.
I was shocked that I had saw it.
I really anxious about victim ...
The east of Japan area was hit by great earthquake.
I pray that their place is getting better.

I am worry about your friend who living your house now.
Did she contact with her family?
I hope her family is O.K....
If I can possible I want to help her.

I  am also very frightened nuclear power plants and their radiation.
The news always infrom about it.
The goverment indicated to take refuge the neighborhood.
We are afraid of this problem.

We do best !!
Once more , thank you so much.
Love xxx ooo,Mami 

And one more (I have so many more):

Hello Lee-Anne. how are you? we had very very big earthquake and Tsunami...  too much people died...  my hometown so trembled. still tremble aftershockeveryday. we had blackout and power cut rotation from today.  but dont worry my family and I are fine.  please say hello to your family.  hitomi 

The last thing I want to write is, knowledge is power people.  Please don’t be ignorant.

Friday, March 11, 2011

Dumped From the Bridal Party

I was to be a bridesmaid for my sister-in-law wedding in early April, but I have been unceremoniously dumped.

I was the only bridesmaid, so it could be argued I was actually the maid of honour... but it sounded so important (insert old and matronly), that I preferred to be called bridesmaid.  Anyway it doesn't really matter now because I am the bridesmaid no longer.

On the weekend, the bride and groom organised a little get together in lieu of a hen's and buck's celebrations.  My husband and I were given a weeks notice.  It was a daytime event, at the pub where the ceremony and reception are to be held, at around the time my son, Sabin would be taking his nap. I wasn't keen on going and neither was Ryan, my husband as it was probably just going to be one great big piss up.  As such I asked my husband to call his sister to excuse us from the event.  I know he spoke to his sister several times during the week and was told that I should come on my own to meet the best man.  In all of my wisdom I decided not to go, because it was going to be a free for all piss up, that my husband wasn't going, that I wouldn't know any of the drunkards attending, it was an hour's round trip and wait for it... I was fairly sure that I would meet the best man in a few weeks at the wedding rehearsal.

It just so happened the night before said get together, we had organised our own little get together/BBQ with some of the parents of my daughters school friends.  It wasn't an especially big or late night, but I was feeling a little worse for wear the following day and didn't really have the patience for listening to drunken ramble.  In all fairness I should have called the bride myself, but instead I asked Ryan to call his sister to send my apologises (as he would have asked me to do with my sister if the situation was reversed), I know he called, but then I wandered off and didn't hear the conversation.  I assumed he said I would not be attending, since that is what I asked him to do.

However the following morning, I received several texts from the bride, saying that my services would no longer be required (well something like that anyway).  The kids had slept in, thus we were running late for school so I didn't call the bride right then and there.  Instead I called my husband, told him the news and barked, call your sister and find out what's going on!!! 

I should add here, that the bride and I are family.  If we were not family we would not be friends.  She is a nice girl, but we have very little in common in the whole scheme of things.  From go to whoa this wedding has been organised in around 3 months.  The bride and groom have been together since I have been on the scene, which is around 10 years.  So a wedding wasn't completely unexpected... I guess they just didn't know that the majority of people give themselves a year to organise a wedding.  All expenses have been spared... at the bride and groom's request.

On the walk home from school, I called the bride and left a message on her phone because she didn't answer.  I listened to a message from my husband on my answering machine at home, which stated that it wasn't just I missed the big piss up, but because I was a most unhelpful bridesmaid!  I can't say I was totally surprised, because there wasn't actually a lot for me to do.  The bride has a very helpful mother, father, brother and nana.  I also didn't have any other bridesmaids to boss around and keep in check.  So after listening to the message I rushed off to my next appointment.

When I returned home around lunchtime I called the bride.  I decided the best tactic was to eat humble pie, which I'm quite unaccustomed to doing really.  She didn't sound super mad, but I'm not really sure what she sounds like super mad.  She insisted that I really needed to go to the free for all piss up at the pub to meet the best man - several times... several hundred times.  I apologised and apologised again - what else could I do?  She went on to tell me that I had not performed my duties as bridesmaid as I had not gone with her to pick her dress or assisted with the flowers.

Enough was enough at that point... I reckoned I was allowed to defend myself.  I didn't loose it or anything, but I simply reminded her that she had asked me to be bridesmaid and the very next day, called me to say that she and her mother (my mother-in-law) had found everyone's dresses (her's, mine and her 2 daughter's).  I didn't hold my breath, but the dress she picked for me was a dark bronzy colour and quite lovely.  I was happy with it, but when the groom saw it, he was unhappy with the colour so it had to be changed.  Then I ended up with a dusty pink skirt and top, dress-look-alike, that was at least 3 sizes too big.  Her nana adjusted the dress and while it's not to my taste, it's do-able.

My presence was requested for choosing the flowers, not real flowers, fake ones at 9am in the morning.  I said I would endeavour to make it, but that 9am meant I would have to be ready with my 2 kidlets to leave the house at 8.30am, a hard ask on any day.  Also running through my mind was that I wouldn't be doing a whole lot more than removing fake flowers from my kids hands than choosing her bridal flowers.  She said that they could wait for a while at the meeting spot... but did not change the time for me.  So when she brought this up as a failed bridesmaid duty... I mentioned the early morning appointment and she said that they would have waited... what the whole extra hour it would have taken me?  I also added that deciding on flowers is usually done solely by the bride, with no added input from the bridesmaid/s - I know this is how it was for me at my wedding - I couldn't have given two hoots whether my bridesmaids liked my flowers or not, it's not like they were paying for them.  And you know what, the bride and I have completely different tastes, like I would have chosen real live flowers for a start...  She still feels slighted of course.  There wasn't much I could say to reduce her bridezilla rage at my inadequacies as a bridesmaid.

By the end of the phone call with the bride and with me still fired I said that I had no hard feelings and that I didn't want this to start a rift between us or our families.  Let's hope she doesn't get wind of this post then....  I haven't written anything untruthfully or that our families, knowing the bride wouldn't agree with.

My guess is that the bride may miss my presence on the big day, when she alone will need to keep an eye on her timetable (oh, but wait, she won't have one, because I won't have written it), keep her daughters clean and tidy for the photos and generally keep the wedding ticking over nicely in her sure to be inebriated state!  Maybe I should pack the bridesmaid attire on the day just in case she changes her mind!

Wednesday, March 2, 2011

A Cure by Brazil's John of God?

The other day I had some time on my hands and was watching Oprah (yes I was bored with Facebook - shock, horror!)  She was talking to some guests about the Brazilian spiritual healer John of God.  This got me thinking about what I would do to fix my MS.

John of God or João Teixeira de Faria, a 68-year-old man has apparently been performing miracles, as in curing people of their aliments for 52 years.  He takes no credit for his healing stating that God heals through him or more specifically, "the healing Entities who work through John of God are the spirits of deceased doctors, surgeons, masters, and saints."  He performs this work completely free of charge to anybody who requests his help - you do not need to be religious or spiritual yourself.  Oooooo free cure, free free free, so either it doesn't work and he knows it or it really does work and he is completely altruistic, has no agenda and is not motivated by getting filthy rich. 

However before you rush out and purchase an airline ticket, you should know that while he often performs "invisible surgeries", which we'll come to in a sec, he has been known to perform basic surgeries with no medical training and with no pain relief... however none of his "patients" in the Oprah footage seemed to writhe about in pain.  (I guess this is possible if a deceased surgeon AND anesthetist are working through João at that moment.)   Invisible surgeries take place in a group meditation room, where nobody actually lays hands on you. People who have experienced this "invisible surgery" report having vivid mental healing experiences.  Unfortunately, you do not get to choose if you will have an invisible surgery or the real deal, but you can refuse the real deal if it is offered to you, but would you if John of God and his Entities said, you need the real deal - I think not.

João Teixeira de Faria's results have been, in most cases, spectacular - curing brain cancer, arthritis, auto immune disorders and AIDS, repairing brain aneurysms, returning sight to the blind, allowing the lame to walk to name a few, but you get the general drift – he is the master healer.  He also treats emotional and mental health problems.  His website states that every illness is treatable, but with varying results.  How disappointed would you be if you went to Brazil for treatment by John of God, but a few months down the track you were not in the least bit better?  It's worth mentioning that John of God does not ask you to stop conventional treatment of your ailment, quite the opposite in fact, he advocates that you continue your treatment and medications. 

So is this all it takes to cure my MS? Oh, along with wearing white in João presence as this makes it easier, apparently, for a person's aura to be seen.  Well I can do the white... but how about the $2100 odd airfare?  Is there a guarantee... like can someone reimburse my airfare if I'm not cured?  Or do I get my next Brazil airfare free?  Yes I am being a little facetious... because if given the chance (and the airfare) to see John of God I'm not sure what I would do.

I love to travel and I would love to go to Brazil.  So, if I were in Brazil, would I make an appointment to see John of God?

At this point in my disease progression I'm not looking for a miracle cure... it feels strange to write that, because I do want to be cured of this terrible illness before irreversible damage is done. So what does this all mean?  Maybe it means I don't fully understand the power of energy healing, like most people and maybe I just need to have faith that miracles can happen...

Anyone want to sponsor me so I can take a trip to Brazil to test the power of John of God?