Dumped Bridesmaid Opens Up About Wedding

So, you might remember a little while back, I wrote a catty blog about being unceremoniously dumped as the bridesmaid from my sister-in-laws wedding.  If you don't then scroll back a bit and have a read... I'll wait.

Oooooooooo I hear you gasp - dumped as bridesmaid by your sister-in-law. Yes. Yes I was... I mentioned that all expenses had been spared at the bride and grooms request - I assumed the day would be a disaster, so I will have to gobble up my words now.

The wedding was a whole heap of fun - everyone enjoyed themselves, including me, the dumped bridesmaid.

I wrote that the venue was a pub, which I had not frequented before the big day.  When I thought of a pub (insert grog shop) as a venue for a wedding I nearly choked - skanky, smelly, dark and dank.  However, I got it wrong, so wrong.  The venue is not known as a pub... it is a "tavern" and while that doesn't really invoke glorious wedding images in my mind, it is a slight step up from, awh we got married at the pub, mate! (Don’t forget your ocker accent with that, it’ll make more sense).  It was a beautiful sunny day and the tavern was light and airy with rolling green lawns and clean toilets.  The public bar was still open for punters and while we could see each other across the bar, none attempted to crash our party - pleasantries and jovial ardour were exchanged.

The bride with her daughters as flowergirls arrived on time to be met by her groom on the tavern verandah.  All guests, including myself stood or were seated on the lawn.  Several family members in hushed tones asked me if I was supposed to be the bridesmaid, I am sure I rolled my eyes and whispered the short version of the story - I was fired.  I didn't want to be disrespectful to the bride on her big day after all.  But I do have to dispense some bitchiness now.  All through the ceremony the bride’s dress straps kept falling down - it was driving me bananas, surely it was driving her, her groom and the celebrant bananas too - it was such a distraction.  If I had been bridesmaid... well you know what I am going to say.  Otherwise the bride looked nice... in her forty dollar dress with her fake flowers.   I'm just dark I didn't get to wear my "special" forty dollar dress - not.

After the ceremony we all lined up for photos in a somewhat organised fashion.  I was standing in my place and happened to look down and noticed the youngest flowergirl didn't have any shoes on.  Now, I guess like the straps, no shoes was not going to be the end of the world.  But from my own experience with wedding photos you pay a crap load for - I wish someone had told my niece in the front row on my wedding day to close her legs so that her orange knickers weren't showing.  So I piped up and highlighted the fact that the youngest flowergirl was sans shoes... I was quickly put in my place.  However during the next break I quickly put her shoes on and adjusted wonky hairclips.  Even if the bride doesn't notice in the photos - I will know that I put those shoes back on!  Pat on the back for me.

The cocktail food was tasty and plentiful and seemed to keep coming out all afternoon.  There were two wedding cakes - a serious, fruit cake number with the standard wedding caking white icing and a hunk of chocolate cake with no icing... who in their right mind doesn't like icing on chocolate cake?  The bride that's who... They almost forgot to cut the cake, and by the time they got around to cutting it, it was late in the proceedings when everyone was too inebriated to care.  If I had been bridesmaid... well you know what I am going to say... luckily I was there with my camera to take some photos instead!

The beer and wine was free flowing so pretty much everyone was happy.  I was designated driver, but I too was happy.  Late in the afternoon, after I had been ready to leave for about two hours give or take, my husband decided he would use his cousins spare football tickets and take his other cousins boyfriend to the footy.  I could have left two hours earlier - but still I was happy.

I think it must have been a combination of events that left me happy on the day - the weather, the food, the venue, being surrounded my husband’s fantastic, social and supportive family, and not being bridesmaid.  Perhaps it was much deeper than this... perhaps I was truly happy that my husband’s sister was happy with her lot on her big day.  If I had of been her bridesmaid, this would have been my task - to make sure she was happy, comfortable and organised on her day.  And blow me down, she proved herself truly capable of organising things for herself, just the way she wanted them.  Well done!
 
She really didn't need a bridesmaid.

I saw my sister-in-law on the weekend and I started to internally cringe a bit, but she put an immediate stop to that, giving me my usual peck on the cheek and then coming to sit next to me.  Clearly she is not into grudges.  I've learnt a couple of lessons from all of this and that is, do not accept any role right away, just to seem polite and cheap wedding are just as much fun as expensive one - just without all the expense!

Australian of the Year and MS-er

It's come to my attention that the 2011 Australia of the Year has MS.  Bet you didn't know that!!  Yeah, I know, perhaps you did, it was announced months ago - so maybe I am really the last to know...  Anyways in case you didn't, or if you forgot, his name is Simon McKeon.

Simon has an impressive resume and is well known as a prominent investment banker,  he is an active philanthropist, climate change advocate and accomplished yachtsman, not to mention handsome - with a mop of wavy dark brown hair (can't fail to mention the important things).

He has had some fairly frightening MS symptoms - temporarily blinded and paralysed from the waist down.  He says that, one thing he firmly resolved after this, was that he would try not to take any day for granted. He didn't want to leave, having a very serious connection with the community until he was old and past it.  Clearly he has the fighting spirit and has used it to overcome his diagnosis and become a highly successful man.  This is an inspiration to me... just because you have a terrible diagnosis, doesn't mean you can't harness the emotions surrounding the diagnosis and use them for good to whatever level you wish.

It got me to thinking about other Australians with MS - celebrity Australians as they seem to be most often recognised as role models... I came up with Chrissie Amphelett of The Divinyls, Betty Cuthbert Olympic gold medalist in sprinting and Collen McCullock - great Australian author, although she rarely publicly mentions she has MS.  And that's it, thats my list... do you know anymore?  Surely there are more... leave me a comment if you know more celebrity Australians with MS please.

The important thing to remember is that, even though the majority of people with MS are not celebrities, we are all inspirational in our own right, to the people who know and love us well and to those we have just met.  Keep on keeping on people... be inspirational by being the best person you can be one little baby step, moment or day at a time.  Good luck.

My Mothers Day

I know, I know, Mothers Day was a little while ago now... perhaps someone would like to speak with my lecturer who insists on setting super hard statistical assignments that take up all my time and brain space.  Statistics seem to sap the creativity right out of me!  However, my assignment is just about all done, so I thought I'd get back to my blog.

So Mothers Day right?  For some mum's, mine included, Mothers Day isn't a big deal - it's just another day.  I can hear where those mothers are coming from... but as the mother of a five year old, I just totally love Mothers Day, because my five year loves it, she gets so excited and that excitement is contagious.  I am going to be so sad when her excitement about things dissipates... or she gets to cool for school for genuine, jump out of your skin, turn yourself inside out enthusiasm.

So her excitement builds in the weeks leading up to Mothers Day.  It almost peaks a few days before when at pre-primary they make Mothers Day cards, gifts and attend the Mothers Day stall at school.  So let me initiate you to the Mothers Day stall. 

Several weeks before Mothers Day, a note in the school newsletter goes out requesting donations of gifts to the Mothers Day stall.  It doesn't say what type of things to donate, or whether they should be brand new or second hand.  I have always assumed that the donations could be preloved - but in good condition - perhaps a re-gift... but I wouldn't have really thought people would go out and buy a donation.  How wrong I was?  I am now a member of the P & C, and the fundraising committee and well people on the committee expect the gifts to be new - I know, go figure.  To me half the fun of it, is seeing what interesting pre-loved knick knack my daughter thinks I will think is the most beautiful, awe inspiring thing I have ever seen.  I fear that something that is totally new, will lend itself to being just another item for me to re-gift because it has no special character... but I guess some hand lotion wouldn't go astray.  Anyway, if your child brings a gift then they can be one of the first to line up, pay $2 and select a gift.  Those who do not bring a gift are not left out, because many parents donate several "gifts" and so provided you have given your kid $2 and they haven't lost it on the way to school... then you too can get a Mothers Day gift!

When I picked my daughter, Chynna, up from school on the day of the stall, she gave me strict instructions not to open her bag because the gift was in it!  I had to wonder if, since it was early in the week, she would be packing her own lunch for the rest of the week.  Of course we negotiated a solution - she would observe me remove her lunch from the main pocket of her bag... leaving the small pocket holding the gift untouched.  Then she would take her bag to her room and hide the gift until her Dad came home to help her wrap it and she would return her bag to the kitchen, so I could repack it the following day.

By the time Mothers Day came around, I had no idea about what the gift was - none!  It seems at five years of age, you are quite good at keeping a secret.  A few time, I had to remind her to keep her secret, as did her Dad a number of times over dinner.  But I really had not an inkling.  I was much more concerned about the fact that no one had booked breakfast anywhere the day before Mothers Day.  I wrote my husband a list of places doing breakfast in the Swan Valley.  He was "good" (eventually) and called them all - but of course they were all booked out all day and had been for weeks!  My mum telephone for something quite unrelated and happened to mention that they were going for breakfast at Seventh Avenue, but they hadn't booked!!!  I was like, oh um, I don't think you'll get in, but if I book it for you can we join you pleeeeeeease.  So that is where we had a surprisingly delicious buffet breakfast at 8am.  I think the early start was possibly the key to the deliciousness of it all.

Having breakfast with my Mum was great.  We hadn't done it, probably since Mothers Day the year before.  We got to have a nice relaxing breakfast, while my Dad and husband kept the kiddly winks in line.  What's even better is that I got my mum a really useful and most awesome handmade gift.  I knew right away that she'd appreciate it.  It was a handmade peg apron, so that she wouldn't need to bend over to reach her pegs anymore.  It was made by my sewing virtuoso friend, Jacquie, who has a new online store - Pebble Lane Studio, check it out:

http://www.facebook.com/Pebblelanestudio, or

http://www.madeit.com.au/storecatalog.asp?userid=27083 

My mum loved her peg apron - love your work Jacquie!

Anyway, I've left my favourite part of Mothers Day until last.  Chynna walks into my bedroom, jumps on the bed and snuggles up.  My husband whispers to her, did you forget, it's Mothers Day and she promptly jumps off the bed and runs down the hall.  She returns moments later, with her gifts.  She gives me a big hug and tells me to open the card first.  Being the obedient mother that I am... I contain my urge to rip open the gift.  There are three little parcels and so she hands me the card.  It is so gorgeous that I almost cry... thank goodness for teachers, who are mothers themselves and know what will make us beam the biggest smile.

It's so much better than it was last year, because Chynna can write her own name and copy words now.  I will treasure this card forever and I will put it in my "glory box", well, what will be my treasures box.  It'll keep me in touch with what is important and that is that Chynna loves me because I cook her noodles and pizza for dinner every night!!  Hahaha - how easy would my life be if that was the case.

Next she handed me a little, totally unexpected little package.  And again it nearly made me cry.  It is amazing the things your kids know about you.  She knows that my favourite colour is green. She knows my favourite food is raspberry chocolate - I think she means Cherry Ripes, I guess if I had to name a favourite food I would say Cherry Ripes (because, in general I just love to eat and therefore food is my favourite food)!

      

 She has also indicated that I like to cook dinner - which is my absolute favourite past time!  Good try sweetheart.  And she loves me because I cook dinner for her and well, that might be translated to I cook her special dinner when she refuses to eat the dinner that everyone else is eating!  This was a fantastic gift, it made me laugh and well, I just felt special - really, truly!  That sounds sarcastic and I really didn't mean it to be because I am being 100% sincere.

Inside the above little fold out card, wrapped in tissue paper was a pair of Chynna made earrings.  How cute are they? I wore them all day and made sure I pointed them out to everyone.  It's so cool to be able to wear something that your daughter has made for you.  Earrings as well - what a good idea!  I think, after opening the cards and earrings I said, I didn't need anything else for Mothers Day - I could feel the love from my handmade cards and earrings.  My husband sighed and said he'd take his present back to the shop.  It's a bit hard to compete with a five year old.

        

Last was the Mothers Day stall gift.  Like I mentioned earlier, I couldn't wait to see what Chynna had picked for me.  Chynna was so excited to finally give me the gift that she was bouncing around all over the bed.  It's an interesting little number... she followed in the jewellery theme... I'm just not sure I have anything to wear it with - since it will absolutely own the outfit!

Hehe, obviously she loves it - shiny and big, like a princess necklace.  What a cack!  

So thinking I had completely cleaned up in the Mothers Day gift department, my husband gives me my final gift and it turns out to be something I have wanted to get myself for awhile.  His ears have been switched on afterall.  He gave me an Emjoi.  Goodbye shaving, hello silky smooth legs - if I can find the time of course!!

I love Mothers Day.  May it alway be as exciting and as precious as this one.

Easter Holidays

I know I am about two weeks too late, but happy Easter every one.  I hope you had a great time eating Easter eggs and the like.

My family and I went away for Easter, with another family to a small city in the mid west of Western Australia, called Geraldton.  It is about a four-hour drive if you drive non-stop, but if you have kids, and I do, it took around five and a half hours.  It is a lovely coastal city, with great beaches and warm weather (also humid so I discovered) and picturesque ranges to the east.

The family we went away with, to be known as the G'mer's we have known for around one and a half years.  This friendship began through our daughters, who became "best" friends almost immediately on commencing kindy together.  The G'mer's consist of Mummy Maz, Daddy Brett, Chelsea (5), Riley (3) and Kourtney (4 months).  They are super friendly, super generous and posses miles of integrity, not to mention they are all beautiful to boot.

So here is what I learnt this Easter holiday trip away.

No matter how good your intentions are you might not get up and leave by 5am. However the G'mer's who also had the best intentions to get up and leave much earlier than us, left much later than us.  We discover this when they pulled in to the Badgingarra Roadhouse half an hour after we did.... they had a problem with fuses and trailer lights - not a lascivious love affair with sleep.

We stayed with Daddy Brett's uncle Bob and his lovely wife, pot plant extraordinaire and photographer Leslie.  Leslie has a super cute English accent, which I couldn't help but imitate after a couple of days!  She has a heavy metal rock star son, who has recently been on a world tour (perhaps she might add a comment, telling us the name of the band, cause I've forgotten... pretty sure it had a 666 in there).  Bobby, a bit of a secret gardener, lawn bowler (I didn't hold that against him) and is a mean card playing train driver.  He has a fantastic train set hiding in his back shed and there home is scattered with train memorabilia.   I learnt that these people are lovely, generous and incredibly patient.  One of the first things they said to us was, "our home is your home"!  I kind of wonder if they wished they could eat their words right back up the first time we unleashed the kids in the back yard.  I know that their teeny dogs, Sasha and Amber probably would have chewed those words to shreds.  It turns out they had no interest in baby sitting our kids and spent most of their time in a custom made cupboard kennel!   

The best laid plans might as well mean no plan... as far as our sleeping arrangements were concerned.  Both the G'mer’s and ourselves carted our tents to Geraldton.  We also knew that there was a spare room and an empty caravan.  I guess, by the fact that we both brought tents - meant that we were sleeping in our tents.... but it's not quite what happened.  Only one tent went up, which was inhabited by my husband Ryan, our daughter Chynna and Chelsea.  I slept in the caravan with Sabin, my son.  Brett and Maz slept in the spare room with their daughter Kourtney, and Riley, bless him, slept in the lounge room.  I'm pretty sure Riley would have loved to have slept in the tent, but he has a funny little habit of waking up, finding a new location and going to sleep again.  Maz has said that she has had to search her home for him on several occasions.  It might not have been good to find him asleep atop a rose bush!  Anyways... I was quite happy with my sleeping location in the caravan with Sabin.  He sleeps really well, I was protected from the cold and condensation, had a modicum of privacy and was not forced to get up at 6am when the girls got up because I could lock the door, although I could still hear them - loud and clear!

I learnt that the Dongara Irwin Race Club holds a meet over the Easter weekend for the Dongara Cup.  It was super casual - we had a bit of a picnic set up under a huge gum tree right by the race track.  While it was super casual... you could get dressed up if you so wished.  There was a Ladies Fashions on the Field comp for those so inclined.  I learnt that my twenty-month-old son is fascinated by horses and horses racing around a track.  He stood on the fence for each race and on a couple of occasions refused to move from the fence between races in case he missed something.  At one point, he motioned to a woman sitting on the lawn every 30 seconds that the horses were gone and when would the next race be.

I also learned at the races that my husband is a very fast sprinter indeed.  As between race entertainment they held a 100 metre dash - one for the boys and one for the girls.  Two of the boys... not our two, got out on the track in their undies - tight black boxers (very nice indeed) and off white well worn y-fronts (not so nice- but good try).  Our boys got out there and had a bit of a wager on who would come in before the other.  Now I knew hubby was quick, but Brett is pretty fit... so I really didn't know who was going to get up.  There was a lot of elbowing at the start, but my husband is really darned fast and he came third overall.  My question is how fast would he be carrying three of us, if a massive tsunami was approaching???

Ryan has the denim shorts and green shirt with yellow stripe on.

I learned that at 5 years old it is acceptable to lie about, dob on, yell at and hit your best friend often.  Then five minutes later, have forgotten all about it, but then five minutes after that shoot the other one down again.  This is where I know Leslie and Bobby were very patient souls indeed, they didn't yell and scream, like I did probably with one and a half days to go (well I guess to be fair to myself... I didn't scream either, not out loud anyway).  There is only so much whinging, whining and dobbing one can put up with, especially if you have MS, have been going hard for three and a half days and then are so worn out that all you want to do is sit in a quiet room and not move for 48 hours.

I learned that your children will suffer no lasting ill effects if they eat chocolate for breakfast, lunch and dinner with some other crap thrown in for good measure!  If we were at home I would have let Chynna have maybe one Easter egg at breakfast, then slowly consume the rest over the coming weeks.  And Sabin... he's tricky, because Chynna at the same had not eaten much chocolate at all in her short 20 months... but obviously because he see's Chynna eating chocolate he wants some too, so he would have to have had one at breakfast too.  I also would have consumed my eggs slowly... but I learned (just not in Geraldton) that if you have eggs and other crappy food to eat, whether you eat it in one hit or slowly over a few days/weeks you are stilling going to eat the same amount of calories anyway.  I also learned that Maz and I have the same eating philosophy... eat what you want and if it tastes nice lots of it.  I am paying for it now of course... on a watch what you eat health kick - more like boot up the date health kick!

 
I learned that my son is the gatekeeper and loves to watch model trains.  Sabin over the five days we were in Geraldton, opened and closed the little gate onto the patio, like a million times.  He and Riley had a number of squabbles over it... which I think Sabin won.  He liked to open it to let you in and open it to let you out - he'll make a great concierge one day.  He loved to join Bob in his shed, stand up on an old chair and watch the model trains go around and around on the track.  We live right near a freight line, so Sabin sees trains daily and I tell you he is “obsessed”.  One day to escape the arguing 5 year olds, Bobby and Sabin went and hid in the back shed all by themselves.  When the girls discovered them, Bobby firmly asked them to go away. Good on ya Bobby.

I learned that I can play cards.  One night we all sat around the table and played a game called Sevens - no adding or subtracting in a hurry thank goodness!  Cards are played out to form a layout of sequences going up and down in suit from the sevens a la solitaire and the game is won by emptying one's hand before the other players.  I won a round... as did everyone else.  Bobby has a serious poker face and won several rounds.  Card games are great I’ve decided... because you can gossip and muck about in between some serious- strategic-plan-making card stuff... which gets progressively more serious when alcohol is involved!

I learned that my daughter is probably never going to go fishing again.  She caught the first fish on her first ever beach fishing trip.  She was very excited until she found out she would be eating the fish and that this meant the fish would die.  To avoid a monumental break down, I quickly suggested that because the fish was so small that we throw it back.  But then later Chelsea caught a fish and it was put in the bucket and Chynna had an EPIC meltdown.  I tried to explain that there are millions of fish in the sea and that I couldn't make someone else chuck the fish they'd caught back... but she wouldn't have it.  Ryan caught another tiny fish and I made him throw that one back without Chynna seeing it.  Brett decided Chynna had been watching too much Bindi Irwin (if you don't know who that is google her - crikey!) and that she was some Green Peace warrior, but I think it was more likely that she was totally unprepared mentally for the ordeal.  You know the catching and eating thing... I could have helped her, by telling her in advance about the reason for fishing which didn't mean looking at the shiny, sparkly, pretty fish - what a bad mummy!  Eventually Chelsea's fish was set free because nobody caught anything else anyway.

Lastly, I learned that water is a great entertainer for children of all ages, even the ones in their 30's and 40's!  Geraldton has an awesome water playground, which kept us all entertained for hours.  The biggest problem associated with this was the sun and sunburn.  Ryan copped some flack for the amount of sunscreen he put on the kids, which was our usual amount.  People think that sunburn cream is supposed to go on lightly and leave no trace, when in fact the opposite is true.  Sunscreen should be applied liberally and not rubbed in until it disappears.  Proof is in the pudding - none of the kids got burnt.  I can highly recommend the water playground at Geraldton’s foreshore, it’s grassed, has shade and it’s close to the gelato shop, The Dome and cafes… what more could you ask for.

So that wraps up what I learnt… almost.  I also learned that holiday trips are fun when you go with family and friends.  I am really looking forward to next year’s Easter break and the trip we have planned to the Dongara Races.

Motorcycles, Trauma and Hospitals.

I went and saw a friend on the Sunday.  I was happy to see him, because I haven't seen him in ages, but I was not pleased about the circumstances at all.  His alias is MC and he was involved in a hideously serious motorcycle accident about a month or so ago.

MC was driving straight through an intersection during an amber light and unfortunately for him, so was a turning car.  I guess it is going to be difficult to decide who was at fault because they were both somewhere they probably shouldn't have been during an amber light.  (Note to self, amber for all intents and purposes means STOP if at all possible!)  MC was thrown 30 metres from the collision into a wall.

Wouldn't it be nice if I could say, oh and MC got up, dusted himself off and continued on his merry way?  But of course, this was not the case... two broken legs, tib and fib of both, a broken rib and a completely destroyed left arm.  We are talking a broken humerus and radius with a pretty darn severe brachial plexus injury.  The brachial plexus injury in MC's case means that he landed funny (obviously not haha funny!) against the wall, probably with his arm behind him, so that the tendons and nerves were majorly damaged.  The result is that he has no feeling or movement from about half way down his bicep.  Nerves were taken from his leg and groin and replaced in his arm, but as us MS suffers know, nerves take a really long time to heal and his hand is not yet working.  Thus the doctors have given him a two year time frame for his arm to come good, otherwise it will be amputated...

I think about those two years and I think about all the pain, commitment and hard work that MC will need to put in to get his arm and hand working and wouldn't it be totally devastating after all of that to then to have it chopped off.  He seems fine about this scenario, but perhaps this is a little bravado for his audience.  But I am sure (and I hope) that he uses knowing that the next two years will be filled with pain, commitment and hard work as motivators so that they are not in vain.  Good luck buddy.

Eventually, he will also need to have a full knee reconstruction as well.  Life for my friend will be a little, no, a lot uncomfortable for the next few years at least.  It gets me to thinking about why such horrible things happen to people or why people, like me, get terrible diseases?  Is it because we are bad people - no, I doubt it; otherwise every stinking paedophile would die a slow, painful, torturous death before their time.  Is it because of karma... hmmm, well if it is then many of us have done something hugely wrong and again every stinking paedophile would die a slow, painful, torturous death before their time.  Is it to teach us a lesson?  Um, er then lots of us must be slow learners because those lessons involve considerable pain.  Do things happen for a reason?  Or is everything abstract, random and accidental?  Sometimes I don't know what I believe in…

Oh I failed to mention that MC during the nerve replacement op (I think, not sure how many he has had) nearly died on the table.  Oh the post traumatic stress…

MC is currently staying in a rehabilitation hospital.  The hospital was like a rabbit warren, it was incredibly unwelcoming and walking through the empty corridors on a Sunday afternoon I felt spooked.  I also assumed MC would be in a private room - too many visits to maternity wards obviously, so I was shocked to walk into a room filled to the brim by MC and three other trauma unfortunates.  I understand now that a room full of blokes in similar situations could be a good morale raising activity but I think it's more likely due to a lack of space and outdated facilities.  It was really quite depressing, but it would have been a whole lot more depressing, for MC anyway, stuck in a bed 24-7 all by yourself.

So we had a nice chat.  I didn’t cry about the magnitude of damage done to MC's body.  And I came home and banned both my children from even considering a motorbike as a form of transport. I told my husband in no uncertain terms that I don’t care how experienced a motorbike rider he thinks he is, that he is never ever ever getting another bike.  Ever!

Humphrey , The Toy Poodle Who Never Looks Happy in Photos!

So here I am again.  I haven't been able to blog as regularly as I would like to because I am back studying again.  I'm doing Honours in Psychology (or 4th year) really part time.  Usually part time is two units a semester and you would finish 4th year in two years, but I am doing just one unit a semester... until I have to do my thesis which I have to complete in a year like everyone else, so in theory I should have 4th year finished in three years.  Anyways I am doing a statistics unit and it's not very easy, so it's taking up much of my headspace and time.  I'm procrastinating right now... I should be reading about MANOVA, but I think I have conditioned myself to fall asleep whenever I start to read the textbook... thus I think reading at 1.30 in the afternoon when I'm feeling drowsy is not the best bet!

I keep good company when I'm doing uni homework.  My faithful dog, Humphrey usually hugs my feet while I'm still and is my shadow when I'm on the move.  Mostly he's a good companion - he doesn't whinge, chat back or not eat the food I give him.  But he's not great at giving tight hugs, helping me with stats or making dinner.  Humphrey is an 11 month old toy poodle.  The best thing about him is that he doesn't drop hair at all, which is great because he's an inside dog.  Everyone, and I mean everyone who meets him comments on his colour, either that it is not a usual poodle colour or that he is beautiful or some mix of both.  He's a hard colour to define, kind of a light red/brown.  He is a very happy and playful dog - he's great with the kids and an awesome playmate - he keeps them busy when I'm busy.  He is just the right size too - Sabin has had him in a headlock before and he can jump up and not knock them over.  Right now I can think of three irritating things associated with him... his squeaky bark and high pitch squeal when he thinks he's missing out on something, the fact that I get out of bed at 5.30am to walk him and he never ever looks happy in photographs.

He is actually quite hard to photograph because he just is never still for long enough.  So maybe he is happy but you can't tell because his face is always blurred.  Other people, such as my husband and an anonymous commenter to this blog have pointed out that perhaps he looks unhappy because of his feminine hair cut, ie your typical poodle "do"... pom poms on his legs and fluff on his head.  After all he is a poodle, so Humphrey should expect to have his hair cut appropriately.


I'll let you in a on a little secret... I get Humphrey's haircut in a poodle do because I love to watch my husband's reaction.  He is horrified that we have a poodle that looks like a poodle.  I know - what did he expect... we bought a POODLE!!  When we purchased Humphrey last year he was a tiny ball of fluff, so maybe Ryan thought we bought a poodle that didn't look like a poodle - crazy I know.

The anonymous commenter thought that Humphrey looked like a girl with his pom poms... but check out his latest crew cut, he still looks like a girl.  He has super long eyelashes, which the groomer trims when Humphrey goes in for his regular appointment.  So I think all Humphrey can do is man up, use a deeper bark and wee on way more trees.


I had planned on giving him a mohawk, but the groomer decided that he is still too wriggly for anything that requires a straight shave.  I have to tell you, Lexy the groomer was very upset that she had to give Humphrey a crew cut, because Humphrey’s hair just goes perfectly into a head pom pom (technical term, anybody??).  She point blank refused to trim off his dunny brush tail.  His crew cut  actually matches my husband’s current haircut - a number 2 all over.  Ryan looks like a crim with such short hair and a goatee.  Humphrey looks quite cute and at least I can see his eyes now.

So here is a picture of Humphrey and Ryan - same hairstyle!  Who's most handsome?


I think I know who'll be more annoyed at this comparison!


Poor Humphrey, I think he is just destined to look like a girl and take unhappy looking photographs!

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. 

Japan, Earthquake, Tsunami, Radiation and Ignorance

 dear japan
" SUCK SH#T"
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:

http://www.theglobeandmail.com/news/world/asia-pacific/area-around-chernobyl-remains-uninhabitable-25-years-later/article1943614/

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.

hello,Lee-Anne

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

Hi.
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 （aftershock） everyday. 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.

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!

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?

Disease Diablo. If I Had A Choice. Part 2

If you are new to this blog… it might be best to start reading the previous post, Disease Diablo. If I Had A Choice. Part 1.  But if you decide not to, it might help to know that I have MS and am being visited by a Disease Diablo in this post, who is giving me the chance to swap MS for another chronic disease.

How about Parkinson's disease? It starts off sounding like MS; it's a progressive degenerative disorder of the central nervous system.  Your movement is affected with shaking, rigidity, slowness and issues with gait.  Later in the disease cognitive and behavioural problems arise, such as dementia, sensory, sleep and emotional disturbances.  Onset of Parkinson's is common around 60 years of age and it is uncommon before 40 years old.  It is idiopathic, that is, with no known cause, although there are some atypical cases with a genetic origin.  There appear to be many risks (pesticides) and protective (smoking) factors.  There are some treatments for early symptoms, however as the symptoms progress the treatments become ineffective.  Diet and rehabilitation show some effectiveness in alleviating Parkinson's disease.  Surgery and deep brain stimulation are used as a last resort to reduce motor symptoms.  There are some promising treatment avenues being investigated, such as stem cell therapy and neuroprotective agents.  It is better understood than most other neurological disorders (but still they can not come up with a cure).  Although Parkinson's and MS begin in the CNS, Parkinson's like Huntington's seems to follow a steady decline with a loss of mental sharpness.  With MS there is not necessarily a loss of mental acuity.  I'm also not so sure about the no known cause thing because that may make a cure harder to figure out.  No thanks Disease Diablo.

Would I swap MS for cancer?  Cancer is a scary disease, with scary treatment.  Your prognosis is dependant on your type of cancer and the extent of your disease.  It could be terminal or with treatment you could get better and never be bothered by it again.  I think there must be a lot of psychological trauma associated with cancer - do I or don't I have it, will I or won't I get better, is it contained or has it spread, will I live to see my children grow.  This along with the frightening treatment that may not work (which if I had cancer I would have) would make me think long and hard prior to swapping my MS for cancer.  While I am unsure about what my MS is going to dish my way, I am unlikely to die from it (touch wood).  One of the scary things about having MS or any of the other diseases mentioned is that it doesn't make you exempt from contracting another terrible disease like cancer.  Pass on cancer Disease Diablo.

What about a chronic autoimmune disease like Lupus, in particular the more serious Systematic Lupus Erythematosus? It is an autoimmune disease that can affect any organ or system such as joints, kidneys, brain, heart or lungs.  It can have neuropsychiatric manifestations, such as the Lupus headache, as well as cause seizures, cognitive dysfunction and fatigue.  It mimics many other diseases – MS included, but is much more unpredictable.  Like MS it affects more women than men and has no specific cause, although there does appear to be environmental triggers and genetic susceptibilities.  If you are diagnosed with Lupus after 60 years of age you are likely to have a more benign disease.  Treatment involves preventing flairs and reducing the severity and duration when flairs occur.  As such treatment that addresses flairs can include corticosteroids and anti-malarial drugs and sometimes cyotoxic drugs.  Disease modifying antirheumatic treatments are used preventively to reduce the incidence of flares and the process of the disease.  In more severe cases of Lupus immunosuppressant drugs are used.  Varying degrees of pain are felt by Lupus suffers thus ongoing pain medication is a must.  Three important lifestyle changes must be made to avoid flairs and these include avoiding sunlight,  avoiding medications unnecessary in the treatment of Lupus and reducing exposure to pesticides, silica and mercury.  The majority of Lupus suffers can live a normal lifespan.  Hmmm more unpredictable than MS, um, no thank-you Disease Diablo.

You know what I've learnt about reading up on other diseases... that all chronic disease is horrible.  Fortunately you do not get to pick which disease you get afflicted with... because if you were to do a little research, like I have, you couldn't possibly decide which disease was the best to have.  I guess the best we  can hope for when we are delivered a disease by the Disease Diablo, is that it will be mild, that the treatments work, that our children will not inherit the disease and that a cure is not far away.

Disease Diablo. If I Had A Choice. Part 1

One upon a time in a land far far away there was a fair maiden, her name was Princess Lee-Anne.  Princess Lee-Anne suffered from a frightful disease called Multiple Sclerosis.  One day a Disease Diablo visited Princess Lee-Anne, who offered her one chance to change her disease.

There are so many terrible diseases in the world.  Sometimes when I'm thinking too much about MS, I wonder what my life would be like if I had a different disease.  I have never really looked into it before.  But now I have and you know what, they are all frightful with no cure.   

So if I was visited by a Disease Diablo (well it would hardly be the tooth fairy), who gave me the choice of staying with MS or choosing another chronic disease, would I kiss my MS goodbye for another affliction?

Would I swap MS for an irreversible progressive brain disease, such as Alzheimer’s disease?  All your memories are erased, your thinking skills are destroyed and eventually you are unable to carry out even the simplest tasks.  You will most likely end up bed ridden and in fulltime care.  Scientists are unable to locate a cause/s of this disease.  There is no cure, and very little treatment.  Perhaps the only possible upside to Alzheimer’s is that onset usually commences in your 60's - so that is 60 years of disease free living and disease free worrying. I would hate to loose all memory of my life and children - devastating, utterly devastating.... although I guess as the disease progressed, I wouldn't remember I had anything to remember.  Hmmmm, no, pass on Alzheimer’s, Disease Diablo.

How about Leukaemia?  Would I say yes to this blood disease, whose symptoms include, but are not restricted to fever, chills, loss of appetite and weight, abdominal pain, tender lymph nodes, malaise, bone and joint pain, excessive bruising and bleeding, vomiting, confusion, loss of muscle control, seizures and death?  It is a well-understood disease and there are several options for treatment, such as chemotherapy, interferon therapy, radiation, surgery and stem cell transplants, which have a list of side effects including many of the symptoms of the disease itself.  A good thing about the treatments is they are known to actually work and bring about remission and cure, but they can make you very sick in the process.  As everyone knows, I hate vomiting... so I would never voluntarily pick a disease where I am going to vomit or where treatment would make me vomit.  I just couldn't do it.  I know this seems very shallow and there are bigger issues with Leukaemia to consider.  But on the vomiting factor alone I would say no thank you Disease Diablo.

Would I swap MS for CF or Cystic Fibrosis?  It's treatment and daily management is intensive, including airway clearance and up to 40 enzyme replacement tablets per day.  I would also need to survive on a high energy diet with added vitamins, salt and exercise.  This is in the face of a persistent cough, difficulty breathing which is made worse by physical effort, lethargy, weakness, a frequent need to visit the loo and a poor appetite.  I think it must be a daily struggle to make your body do all the things it inherently does not want to do... After a lifetime of CF your lungs may be unable to fight back anymore and you may need a lung transplant to survive.  Those in the know, know which gene is responsible for CF and they know how the disease works.  It is a recessive genetic condition and it is present at birth.    There is no cure and CF can result in death if not managed and treated diligently.  I am a fairly active person with two energetic tots and currently my MS does not make me tired so I'm sure CF is not for me. 

What about Diabetes?  I'll run with Type 1 as its treatment puts it in the same field as my current treatment for MS.  However Type 1 Diabetes affects kids, teens and young adults and requires up to 4 injections of insulin per day.  If untreated you can suffer from ketoacidosis and death.  It's easily diagnosed, but prior to diagnosis you may suffer from thirst, frequent trips to the toilet, excessive hunger, blurred vision, weight loss, nausea and itchiness in your nether regions.  The exact cause is unknown (there is a question mark over virus as per MS) and there is no known cure.  However treatment for Diabetes Type 1 is excellent - diet, exercise and insulin are all important factors in its control.  I have established that I can do daily injections - could I do 4... yes, because they don't bee sting like Mr C.  I guess the big issue with Diabetes Type 1 is your age.  As a teen you are going to be pissed that you have to do something different to your friends and may rebel.  If I had Diabetes then I would hope this wouldn't mean eating badly and skipping medication.  Having Diabetes is a disciplined disease lifestyle.  You know what, I might consider swapping MS for Diabetes Type 1… if I could be naughty occasionally. 

Would I swap MS for a neurodegerative genetic disease such as Huntington's disease?  Huntington's becomes noticeable in middle age and affects muscle coordination and leads to cognitive decline and eventual dementia.  While scientists know a lot about his disease, it is not fully understood.  There is no cure for the unsteady gait, jerky movements, decline in mental abilities and the behavioural and psychiatric problems associated with the disease... you are able to prepare yourself for this decline via genetic testing.  (I'm not sure this is a good thing.)  There are some common complications with Huntington's including heart disease, falls and pneumonia - as if the disease itself wasn't enough.  Life expectancy after onset is about 20 years and you can expect to need fulltime care for some of this time.  There are some treatments emerging to relieve the symptoms of Huntington's disease.  Would I swap MS for Huntington's - no.  Huntington's is a steady but definite decline in health.  I don't know what lays ahead for my MS, and me but I'll take my chances thanks Disease Diablo.

To be continued...