Sunday, January 30, 2011

Crowd Blindness

I was out at the local farmer markets today with my kids and mum.   My son had his hair trimmed by an exhuberant Asian man.  I get a little scared about little exhuberant Asian men who are hairdressers, but that is a story for another time.

We were walking through the crowd... I don't remember if I was talking to my mum or staring ahead looking for a path for my stroller, when my daughter started calling out, Xavi Xavi.  She had spotted a friend, her mother and grandmother.  All of whom we know.  I was a little embarrassed, because I could have been staring right at them for all I know, but didn't see them!  Clearly I am never going to be a detective... and perhaps I would be a good target for a pick-pocket!

My husband always thinks I am faking it when I don't see people.  For instance, we where shopping in a mall when we apparently walked past my sisters husband's family - apparently not one or two of them, but like eight!  Ryan said, oh were you trying to avoid them?  I'm like, who?  I truly did not see them.  I hope they didn't see me or they might think I was being appalling rude!

I will admit that sometimes I do see people and just pass by... I'm sure we all do it, when we are in a hurry or if we are feeling unsociable because the enfant terribles have been nagging you all day or if you don't particularly like someone.  I don't do this often... but if you know me and I pass you by you'll be wondering!

My husband always bumps into people he knows - always.  I'm not sure if it because he grew up in Perth, or if he knows a lot of people or both, but he always sees someone he knows when we are out.  We have spoken about it, and if he doesn't introduce me, I should introduce myself, because he cannot remember their name/s.  This happens rarely for him... because firstly, he has a good memory for names and he has some formula for remembering names... one that I haven't yet mastered, probably because I don't know it and mostly I am ok with saying I'm sorry, I have forgotten your name.  Is that rude?

Maybe it's because I never expect to see people I know when I am out and about... because I didn't grow up in Perth.  It would be different if I was walking down the main street of my home town.  Or maybe it is because I think I don't know many people - so as you can see this scenario could be a self-perpetuating circle.

Do I need to expect that I will see people I know to see the people I know in a crowd?

Moving right along then... Mr C has been treating me fine.  In some spots, like my fat belly, I don't feel the sting for quite a long time - maybe a minute or two.  But it really depends on the spot within the spot if you know what I mean.  Bouncy bit of the hips - not so much sting, less bouncy bit of the hips more sting.  Thighs always sting and I have been told that the back of your arms are quite sensitive and thus will sting more...

This week I am going to a "Newly Diagnosed" seminar.  I have never been to one before, and while this is not me per se, I have just started medication, and my quirky neurologist is doing a talk, so I am quite looking forward to it.  I have it on good authority that I do not need to prepare myself mentally for people with disablity... in the past I have been unwilling to attend these things for this main reason.  I have been to the MS Society headquarters maybe only 2 or 3 times and it is always confronting when someone is wheeled through reception with varying degrees of disablity.  It's confronting, sad and scary!  I'm sure no one wants to think about these things happening to themselves and I'm no different.  Thats why I take my Mr C each day with a smile... well almost anyways.

Wednesday, January 26, 2011

Itchy Part 3

Here are the 10 things I've learnt about Mr C's itch. 

1.  Itching does not start on the day of Mr C (and not usually on day 2 either).

2.  First and foremost, DO NOT itch it or it will get worse... much worse!

3.  Stomach and hip sites seem to itch the worst.  I don't do arms... and well, thighs, although they come up in huge welts, only itch a bit.

4.  Do not dwell on the itching - get busy - attend to your screaming child, or neglected household chores (but do not itch or even think about itching where possible)!

5.  Don't itch your itch and then put a "stop-itch lotion" on it and expect it to work - because it will not, not even close!  (Oh and do apply your stop-itch product regularly for it to work effectively).

6.  Sometimes a shower will break the itch, when nothing else will work.

7.  Sometimes pressure on the itch can relieve the itch temporarily.

8.  If you itch, even another, unrelated to Mr C, part of your body, your related to Mr C parts will start to itch.

9.  Hot, sweaty weather seems to make the itch worse.

10.  No rhyme or reason to itching, it comes and goes, waxes and wanes, maybe 3 day after Mr C before it starts, maybe 4 days after or maybe not at all.

For anyone about to start copaxone... I would like to add that the itch is truly bearable - for me it's not a 24-7 thing.  Sometimes it's just not present and life goes on as normal.

Monday, January 24, 2011

Kite Adventure

My husband, Ryan suggested we go to a community activity yesterday.  Kite making and flying at La Salle College.  I dragged my feet a bit.... who exactly was going to do the kite making then?  My four year old?  I don't think so.  My husband - nope, he would be holding and entertaining the 12kg 17 month year old.  So the onus of creating rested solely on me.  Luckily said 12kg 17 month old was having a late afternoon nap, as we got home late from lunch at Ryan's nana's.  Hopefully it would be late enough to miss the event completely...

However 15 minutes after my mother called to confirm we were attending, Sabin woke up.  I had made dinner for my parents and my family, so after the dishes were done everyone, except me, eagerly hopped into the car.  I guess I should explain myself, I'm not usually a grumpy spoil sport, but I had a bit too much to drink the night before and stayed up a bit too late as well.  So while not super hung over.... I was feeling a little under the weather.

When we arrived at La Salle and the kite making was fully under way.  I stood on the outskirts of the group and listened, thinking, oh good we are too late!  Then I noticed my brother-in-law, James handing my 4 year old all the "ingredients" to construct a kite.  He then waved me over with more bits and pieces in his hand.  I quite unwillingly handed Sabin over to my mother and joined Chynna and James in position at the table.

I stood next to a lovely older Malaysian woman, who took charge of my kite making (James attended to Chynna).  She was really great, otherwise I might still be standing at the table, unmotivated today.  She mentioned she used to fly kites in Malaysia.  I think kite flying is quite big in most Asian countries.  I remember being in Tiananmen Square in Beijing or in the parks of Shanghai and Wuxi and there would always be people flying kites.  I have also read the novel, The Kite Runner by Khaled Hosseini where there are kite races - kites fights are common in these races where your kites line is bonded with glass particles to cut your oppositions lines mid flight.  Sounds exciting right?  Well I doubted that my kite flying experience was going to be anywhere near as exciting, although I was feeling more inspired.

Eventually we caught up to the instructor when we needed to draw a design on our kites.  Given that I had just been speaking about kite fights I knew I wanted to draw a mean face on my kite.  My niece drew some flowers... my nephew after some deliberation, decided to draw the sun and my daughter drew a happy face.  They were going to be no match for my demon kite from hell!

Out on the oval kids ran around like crazy trying to get their kites up in the air.  I must admit, although I ran slower, I did a similar thing.  The instructor yelled to everyone that there was no need to run.  So with a gust of wind my kite launched.  I let out some string and it sailed a little higher into the sky.  Then disaster... the wind dropped and so did my kite, right out of the sky.  Maiden flight failure!!  I noted, the Malaysian woman's kite, was sailing high in the sky, so I wandered over to her to gather a few pointers.  Most importantly she said that when the wind drops, give a few tugs on the line to see if you could catch some wind.  My family seemed nicely occupied with their kites in the air more than on the ground, so with that I made my way further across the oval.

The wind seemed a bit fickle... it waxed and waned, but it probably wasn't going to get any better.  I let out some string, let the kite catch some wind and The Demon was off.  I looked around at everyone else and again took pointers from the Malaysian woman, who wasn't winding her line back on it's handle.  One less thing to concentrate on while I was trying to control The Demon - good idea.

Not long after, The Demon fell, very inelegantly from the sky.  A boy, probably not more than 10 years old, ran towards me yelling, look at my kite, look at my kite!  I followed his string, up, up, up into the air and there was his kite.  It was half way to the moon and at least a quarter of an oval away from him.  I jumped up and down yelling at him, that is so cool - your kite is amazing!  He was so happy and excited, that we kept our conversation going while I relaunched The Demon.  I thought if he can do it I can too.

I let the string out further and further, carefully pulling a little in when the wind dropped.  The Demon, was truly magnificent.  He seemed to have a mind of his own up there, doing a random zippy twirl here and there.  I must admit, it did cross my mind that if a kite did a zippy twirl and didn't take flight upwards again that it could take off a head on it's plummet back to earth!!   Just in case I made my way slightly further around the oval...

I was so excited that I jumped around whooping it up when I let the final bit of line off my reel.  The Demon was at full flight - it was impossible for him to go any higher.  I hollered at my husband, half an oval away - look at this, look at my kite.  He waved and smiled, but didn't share my enthusiasm.  The Demon was free, so free that I almost let him goes to see if he would just sail away.

All too soon, my husband blared that it was time to pack it all up.  It was such a shame to have to bring The Demon in... but standing in the middle of an oval, I just couldn't think of an excuse to keep him up.  Slowly I coaxed him in.  Once on the ground, I had to coil the line back onto the reel.  Normally this would be a painstaking slow and boring job, but I was in no hurry, happy to gloat in my own success.

When I was all done, I wandered over to my husband who was standing at the fence waiting for me.  He said, do you know what time it is?  I said, nope.  He replied, 6 o'clock.  Where is everyone?  They left ages ago, and the kids are buckled up in the car ready to go.  That should tell you about my time in the park with The Demon kite - I lost track of the time and was oblivious to where my children were!  What an ADVENTURE - not bad for 2 hours, in a local park on a Sunday afternoon.

When you have fun like a kid... all of your troubles just fade into the background.  So it is fair to say that yesterday arvo I was just like anyone else on the oval.  Not someone who injects themselves every day.  Although I don't have much to complain about on that front.  Stinging, redness, lumps and welts - the usual.  I seemed to have had a few days with no itching, but it's back today.  It's bearable, so still nothing to complain about.  Cheers!

Thursday, January 20, 2011

Vitamin D Anyone?

I would have no problems living in Perth, if our weather never got hotter than it is today.  It is a beautiful (and comfortable) 27 degrees celsius.  I wouldn't mind one little bit, if the weather alternated between raining and cold and a balmy 28 degrees - definitely no hotter than 30 degrees ever.

I went out to collect the mail and noted how wonderful the day was looking  (It helped that I walked past my freshly opened amazing sunflowers... they're all golden, sparkly and cheery).  The lovely sun, reminded me of my last doctors appointment and the horrible scare I had.  I received a letter in the post from my doctors nurse saying that the doctor needed to see me about my test results.  My immediate thought was to my pap smear that I had a few weeks before.  My heart sank... nobody wants anything wrong or abnormal going on down there.  I mentioned it to my husband, dwelled on it for a day.... then remembered - thank God, I had given blood for my latest blood test after my last neurologist appointment.  So then the question became, the results for which test.

So I called my doctors office the following morning and made my appointment.  At the end of the conversation I threw in... the appointment is for test results.  I recently had a blood tests and a pap smear.  Could you tell me which one I'm going to be discussing with the doctor, so I don't have to worry that it going to be about the pap all weekend.  Normally the receptionist, and probably rightly so, says no to anything that sounds like special request. Instead I got put through to the nurse.  I gave her my spiel and put emphasis about worrying it might be the pap smear over the entire weekend.  She obligingly looked up my results and said, the results were for the blood tests.... phew-wee!

So the weekend passed uneventfully and I make it into the doctors surgery.  My GP is the one who first suspected MS, and he knows me well enough to give me a friendly peck on the cheek and quick hug for Christmas.  So we sit down... and he says, your vitamin D is low.  I say, you are kidding me - it's the middle of summer and I take 2000 IU of vitamin D a day - where is all this vitamin D going?

It's crazy that I live in Australia, it's the middle of summer and I'm still low - but not deficient, in D.  In my mind there is no way vitamin D and MS are not related in someway.  Then add on the fact that I am supplementing with Vitamin D daily... it's nuts - I should be way over the limits for vitamin D.

What's the solution?  More vitamin D supplements - 4000 IU... 4 capsules a day.  It's really hard to get a vitamin D brand in Australia that does IU greater than 1000.  My GP remembers that another patient of his with MS uses a brand from o/s.  So he calls her... and strangely enough, she is sitting in the waiting room waiting to see him.  I would have loved to have met her... but that's not protocol apparently.  I gather from the conversation that she offers me some of her 4000 IU D's, but my GP indicates, although generous, that it won't be needed.  She couldn't remember the brand and she will call him back and he will call me.  Obviously when I leave the room and wander back into the waiting room, which is shared by 6 doctors at the practice, I scourer it for the mystery MS lady. But there was no way of telling who it was...

Anyway, when I was in with my GP he handed me a sheet that told me how long I needed to spend in the sun during summer with my hands, face and arms bare to make approximately 1000 IU of vitamin D.  I have to tell you... I would be hard pressed to do that in 36 degree heat, but since today was lovely and mild, and my sunflowers smiled at me I reinspected the sheet.  It said I needed to spend 5-6 minutes in the sun.  So I grabbed a book, took off my t.shirt and basked in the sun.  How pleasant!  I didn't feel like I burning straight away and I didn't feel like I was in a sauna until right at the end... in fact I'm surprised how quickly 6 minutes goes when you are enjoying yourself. 

In winter, however if I wanted to go outside and make up 1000 IU's of D I would have to bare myself for 20-28 minutes!  I doubt I would be sitting on the lawn sunning myself... I'd have to be doing something, like weeding... and that not exactly something I want to do every day!

It's long been known that MS has a particular geography. Thanks for this bit of useful info...

MS is predominately a disease of temperate latitudes and of the western hemisphere. Principally, it is a disease prevalent in Europe, North America, Australia and New Zealand. Although MS is found in Japan, China and some other temperate, eastern countries, it is very much rarer than it is in the West. Regions north of 40 degrees latitude have a markedly higher incidence than those south of this divide. Within Europe, Scandinavia, The British Isles, the Low Countries and Germany have very high rates. Canada, northern USA and New Zealand have an equivalently high prevalence. Within these areas, certain localities such as the border areas of Scotland (203 per 100,000), Crowsnest Pass in Alberta, Canada (217 per 100,000), the northern-most province of Sweden (253 per 100,000) and others have been found to have extremely high incidences of the disease. 

I'm pretty sure that those in the know about MS are now discovering that MS is more common in China and Japan than first thought.  They just call it something else... I'm sure my neurologist mentioned in Japan it's called Devics.

This link is to a map showing the world distributution of MS:

Anyways my daily injections are going fine - thanks for asking.  All Mr C's usual, lovely side effects are present... no more no less, thus I have nothing to complain about, but plenty to be grateful for.

Monday, January 17, 2011

Worn Out - My Non-Weekend

It's fair to say that I am worn out today.  My darling husband decided he was playing bowls, the lawn variety, both days of the weekend - in the middle of the school holidays, so that I didn't get my weekend!

There is only so many times you can hear, mummy what are we doing today, before you start to rip the hair from your own head - 'cause I've run out of ideas big time!  I would have liked a break away from my official position as chief entertainment organiser (and referee).  But it just wasn't to be because lawn bowls (yes old people's lawn bowls) was given priority this weekend been.

It's so hard to come up with ideas when it is 36 degrees celsius outside... the kiddly-winks played under the sprinkler this morning for half an hour donned in their best slip slop slap.  Our neighbours tree, provided a little shade, but it's not like the kids stayed in it.  Oh and then there's the issue of the sprinkler... I could cop a huge fine for turning my sprinkler on, on the wrong day and today is the wrong day.... shhhh!  Not to mention that I am totally the wicked witch of the west when it's time to pack up!

I had to do ALL the nappies, ALL the washing, ALL the feeding, listen to ALL the whinging and crying... ALL WEEKEND - is it really that surprising that I am knackered, when I've had no time to recuperate?  The weekend is time for me to share my lovely offspring with my adorable husband!

On top of my non-weekend.... (because it was just like every other weekday of the school holidays), my Mr C sites were driving me insane with their itching.  My right stomach site came up in a medium sized welt and decided it would do a pas de deux with my most recent thigh site.  It felt like my whole right side was doing wriggly irritating dancing.  I tried to keep my cool and continuously reapplied Soov, but my temper started to wear t-h-i-n by the end of the day.

Today was the turn of my left hip.  Had it not been for the click of the autoinjector, I would not have known Mr C had been injected.  There was no immediate sting or burn.  It gave me an intermittent sting a while after, but other than that the site has played nicely today.  I say today... because you never know what you are gonna get tomorrow!

Friday, January 14, 2011


I did a little looking around today, as I often do when I have some time I found this article from the Rocky Mountain Multiple Sclerosis Center - here is a snippet from it.

People newly diagnosed with MS will usually, and appropriately, focus their attention on treating and controlling MS and on hoping it will go away.  They often make statements like, “I am going to cure this with attitude,” “I am not going to give into MS,” or “I won’t let MS change my life.” After they have had MS for a while, though, most people experience a shift in how they respond to it. There is a realization that MS isn’t going away. It is a paradox. Although most people with MS have an intellectual awareness, from the very beginning, that MS is a chronic illness that won’t go away, the emotional comprehension of what it actually means to have “a chronic illness that will not go away” can be quite a jolt. Accompanying this jolt is the understanding that the rules that govern your life have changed and you will have to change, too. Thomas Kuhn calls this experience a “paradigm shift.” In science, human development, and learning to live with MS, this sort of disorganizing jolt is essential for development to occur. Once the shift occurs, there is no going back. But out of this shift comes the possibility of realistic hope.

The article can be found here

I read this and thought to myself... how true this is, but it goes further.  Every time you have a new relapse or a new symptom or a new MRI with activity or you have to start medication or change medication you seem to go through that emotional jolt all over again, to varying degrees.  I guess it's because you get comfortable with your lot and then the rules change again... change change change and then the grieving process... shock, denial, anger, bargaining, depression, testing and acceptance starts all over again (google Kubler Ross if you are not familiar with this and want to be).
I find this jolt distressing, I'm sure most people do otherwise it wouldn't be a jolt!  Maybe people with MS have heightened anxiety continuously because they don't know what is going to happen next.  I know I have gone to bed many nights wondering if I will be waking up with a totally numb foot or leg.

I saw a friend today, who said something along the lines of, it's so hard to believe you have a disease when you look so well.  I feel well.  I wonder if this changes when you develop a disability... do you stop feeling well? I think I have written in a previous post that before Mr C came on the scene, I knew I had MS, but I didn't really comprehend it as a serious disease, even though I know it is a serious uncurable disease.  The daily medication meant that I needed to re-examine my own personal footnote to the serious information regarding MS.

I have observed that I am starting to view my MS as not so serious again.  Mr C is insignificant, really, if I'm honest in the daily to-do's of my life.  The side effects I experience are the same as everyone elses who has a Mr C in their life, which to me are minimal/minor.

However this outlook about my MS could change at any time... but that's the thing with MS, you never know when... it tends to insidiously lurk around (pretending it's not nearly as bad as it really is!)  This means then that you have to go about your life as it is currently and embrace it 100% otherwise you might lead a quasi-kind of half life of what if's.  And I don't want that for myself. 

Anyways Mr C had an appointment with my right thigh today.  As per yesterday, with my left thigh he went slightly to the inside.  Today's site is a bit raised.  Yesterday's is now red and raised and a bit welty.

Thursday, January 13, 2011

Letter to new MS Friend

This is a letter I wrote a few weeks back to a friend of a friend who has MS too.  It gives a good picture of my initial symptoms and the twisty little story that goes along with it.  Perhaps it will give you some insight into my personality too???

My first issue that led me to my GP was funny feeling feet.  At the time I had been very busy at work and I had been on a health kick – doing a lot of walking.  I don’t know how long my feet thing went on for, but one day I mentioned it to my mum and she said, why don’t you go to the doctor.  They kind of felt like… you know when you go to the dentist for a filling and they give you anesthetic and it begins to wear off… I don’t remember if it was one foot or both.  So I trundled off to the GP, one I had been seeing for a long time.  I took my then boyfriend and now husband with me.  So the GP and I are talking about it and he is yakking away and mentions MS.  My husband didn’t hear him say it, but I did.  I think he took some blood – to do an ANA.  So what do you do if you don’t know about something… you look it up on the web right?

I have a look and oh my god I have several symptoms.  So from that point on I knew I had MS – there wasn’t much doubt in my mind.  I couldn’t explain the L'Hermitte's sign any other way.  Also, the previous year (I think) I had a really frustrating problem.  I lived in an apartment with no air con, so I had a fan.  At night I would put it at the bottom of my bed.  When the fan would swoosh air over my feet it would feel awful… like they would getting hot instead of cold, I had to resort to putting my feet under the sheet.  I never mentioned it to anyone or the L'Hermitte's sign because how do you begin to explain those things?

So I went back to the doctor and started reading George Jelinek.  The ANA test was positive, when is indicative of an autoimmune disease.  But my doctor said to me (among other things) if you were my wife I wouldn’t send you for further tests.  I remember being really appalled at this at the time.  I’m pretty sure he added, that I was healthy and young and that I might never have an issue again. So I left telling him I would think about it and talk to my family.  Which I did and I made another appointment to go back and see him.  He made a referral for me to see a neurologist.

The neuro sent me off for MRIs and a lumbar puncture.  I wouldn’t wish a lumbar puncture on my worst enemy.  Little did I know that for my two babies to enter the world I would need an epidural for an emergency Caesarean section and then a semi-planned one. Both were quite traumatic, but that’s another story entirely.

Anyway, while I was in hospital recovering from the lumbar puncture the results came back positive.  I needed medicating from the shock of it all even though I had done a lot of reading and thought I was prepared.  At my next appointment with my neuro, I decided I wanted a new neurologist because I disliked the way my old one sugarcoated everything.  So I ended up seeing my current neuro.  He sent me for more MRIs... obviously the result was the same. But I felt much better with him, he was scientific, acknowledged that I had read widely and really told it like it was.  It also helps that he is known worldwide in MS circles.  

I was given a diagnosis of benign MS.  After the initial visit to Dr Kermode, I didn’t see him again for about 5 years.  I think I went back because I was pregnant – I can’t remember really.  But I know what started me down this most recent path.  I had some tingling and buzzing on my side and it worried me.  So I went in and while my neuro said it was nothing to be concerned about, he sent me for MRIs anyway.  I think I may have had 2 lots of MRIs six months apart before the latest MRI 3-4 weeks ago.  Up until then my neuro was happy that my MS was behaving characteristically (i.e. mildly).  But the 3 new lesions are a bit out of the ordinary and so current thinking is to medicate sooner rather than later. 

Currently 5 days into my Copaxone injections everything is going well.  No nasty side effects to report and I feel like the same person!!  I think people in online forums might sometimes get a bit carried away or may just be the exception to the rule and online is an outlet for them.

I did go on the strict Jelinek/Swank diet if less than 5g of saturated fat a day.  I was committed to it for 3 years or so, but while I was pregnant it was not healthy to continue and I haven’t really started it back since.  I am still off chicken and red meat, however dairy has crept back in, since my last pregnancy.  I take religiously fish oil, EPO, vitamin E, a multi and Vitamin D.  Vitamin D is especially important.  I take 2000IU of D and get a fair amount of sun and my most recent blood test 2 weeks ago, shows that my D levels are low.  I’m going to the GP tomorrow to discuss.  Apparently vitamin D plays a big role in MS, they’re not fully sure how yet, perhaps it has to do with maternal level of vitamin D while pregnant, but there is some link. 

Back to my GP and his if you were my wife thing.  I can really understand where he was coming from now.  If I hadn’t been so on to my reading early on, perhaps I could have shrugged off MS, thinking it was just an old persons disease.  I have no known family history of MS.  I could have lived the last 7 years and now, in blissful ignorance and without medication.  It would have been nice to live a life free from the lurking of MS.  Unfortunately it was not to be.

Not to be indeed... Back then and now I'm just not the type of person who can erase info that can play a big role in your life (hell I can't even forget info that is totally irrelevant).  I can't help it - I'm a researcher, I want the answers.  There is just no way I could have not had the tests for MS after my GP had put it out there.  

So yesterday was a milestone.  Twenty eight doses of Mr C.  It's a milestone in that I had to go and have my prescription filled and get another box of 28 doses. 

Ryan was away last night, which meant that I had to give myself Mr C this morning.  No problem.  I just did it.  I didn't waste any unnecessary energy worrying about it even though it was going in my thigh, which hurts a little more and has come up in welts the last couple of times.  

No welts.  Yay!!

Tuesday, January 11, 2011

Blueberry Bagel

Yesterday morning, my daughter Chynna, asked me what I was having for breakfast.  Knowing full well that I was going to finish off the last blueberry bagel, I said, oh I might have toast.  She said I wanted to have cereal, but I will have toast too.  Cute but infuriating at the same time!  So we came in from the garden and Chynna sits herself at the bench while I am getting out the bread.  She says, mum are there anymore blueberry bagels left.  I say, I don't know... hmmm (thinking time... no good ideas come to mind) hmmmm, let me check.  So I peer into the freezer at the bagel - the last, delicious, sweet bagel, the one I thought about before going to sleep last night and say, there is one left.  We can go halves.  Then we have a long discussion about halves and what it means to have halves.

I cut the bagel in half, toasted Chynna's half and put my half on a plate ready to eat after I had given my son, Sabin his morning breast feed.  He is very distractable at the moment so I keep the bedroom door closed.  Usually the dog gives the door a couple of test shoves to see if it will open then just plonks himself down outside waiting.  Instead, I hear the handle turn and Chynna's little face appears in the crack.  With a wry smile on her face she tells me that she is eating my bagel...  I figure she is joking and keep feeding.  But as soon as Sabin is done, I go out and check out what is going on.

Sure enough, Chynna's plate and my plate had migrated to the coffee table and she has had a quarter of her half a bagel and half of mine!  Cheeky little monkey!  I told you mummy, I am eating your bagel.  I said, where is your toast?  I ate that first.  Well at least I have taught her something... save the best for last.  She went on to tell me that I could have two bites of her bagel - too right, so I had two huge bites.  She was unperturbed and told me to have no more, as it was her breakfast.  What about my breakfast, you little rascal devil child?

Anyway, Mr C went into my left hip today... but a bit more around the back.  I have been experimenting with using the heat pack first, followed by the ice pack for a couple of minutes post injection.  It seems to work ok on all injection sites except those on my thighs.  However I think I might do a round of nothing - no heat or ice and see how much of a difference it makes.  I have a feeling that regardless of what I do, my thighs are a bit more muscular and might therefore be more prone to welts.  Whereas my stomach and hips carry more flab and welt less.  They still get lumps under the skin, but not a big raised egg-like bump.  I know for certain that I am glad the neurologist said not to inject my arms and that the neuro-nurse also agreed.  Otherwise I might not be sitting here in a spaghetti strap top.

I woke up itching this morning, but I tried not to touch and went about my daily morning business, including walking the dog and I either forgot about it or it went away.  It has not yet returned.  Thank goodness.

Monday, January 10, 2011

Itchy Part 2

I didn't have an itch all day.  I was feeling quite happy with myself until I had a little tickle on my back.  I asked my husband to give me a little scratch and my daughter joined in.... as she has started to do these days.  If I give her back a rub, she will reciprocate and give me one too.  Anyway, I digress... it is so blissful to have a back rub, usually that is... until a simple back rub results in a chain reaction of itchiness.  My hips followed then my stomach and thighs - arrrhhhh.  When is a simple itch not an itch - when Mr C is in da house.

I had in injection in my stomach today.  Not much sting or redness - not even a welt.  Yee-haa.

Sunday, January 9, 2011

Trivial Pursuit

Funniest thing happened last night and I am sure I can say it is a first for me!  I had just read the newspaper when Ryan came out of the shower and asked if I wanted to play kiddie Trivial Pursuit.  I agreed, so Ryan set up the little board.  He got the highest score, so he got to have his turn first.  I read the first question and he got the question right.  It was the kids version of Trivial Pursuit, right, so he just kept getting the questions correct.  He ended up finishing the game before I even had a turn.

So we decided not to play the board part of the game, but just ask the questions.  So Ryan asked me the questions... no biggie, I half watched tv and half listened to the questions.  I was feeling quiet tired, and really should have gone to bed... but I feel like an unadult if I go to bed too early.

So Ryan keeps asking the questions and the next thing I hear is, are you going answer that?  It turns out I fell asleep after answering one question and somewhere before answering the next one.  I don't even remember hearing the question actually.  I can fairly say that I have never fallen asleep mid conversation before, although I'm sure, on many occasions I have wanted to.

This time last year I was having some issue with sleep and being unable to go to sleep.  Once I was asleep I was fine... I had never had any problems with sleep before, but post-natal depression can rear it's head in many different guises.  I had two nights of absolutely no sleep what so ever, due to no fault of my baby's and it has taken me a full year to undo those two anxious nights of conditioning myself not to sleep.  But it appears I have done it!

Mr C went into my stomach today.  Not much stinging was evident, but I have a red mark to prove I did have the injection and no welt.  This is quite unlike my thighs, which are sporting 2 lovely red, hard welts.  The itching continues - I am trying to be good humoured about it because I know if I am not, I will be cranky and horrible.  And no one likes a cranky, horrible mum and wife...  

Friday, January 7, 2011


I got up to walk the dog this morning and I knew as soon I stepped outside that I would almost certainly get wet.  The clouds were all grey, puffy and vertically challenged.  As I was already up and not still snuggled in bed I decided to push on with the walk.  Humphrey and I got about 5 minutes around the block when we felt the first spits.  I had a couple of exits points I could use to cut the walk short if it started to rain heavily, which it looked like it might do, rather than just turn around.  But when we got to the second point it still wasn't raining heavily, so we continued. Humphrey was way more enthusiastic than me, but at 5.45am this is always bound to be the case.   It started to get a little heavier and then a little heavier still but we trekked on.  At one point I noticed that water started to trickle down my arm.  It may have been around the time I had to stop and wait for the train with it's smug dry passengers to pass in front of me.  As soon as we made it to our street it stopped raining.  We made it home - soggy but not soaked through.    Humfrey's fluffy fur on his head had deflated into a geek-like center part. 

Mr C went into my left thigh this morning.  It went through it's normal motions, followed by a big 5cm welt.  But then it threw in a curve ball and started to itch this afternoon.  It was in tandem with both injection sites on my hips and the one on my right hand side belly.  Oh joy - not.  The Soov seems to help for a while... maybe it would help more if I put it on more regularly. 

In the future, I know I am going to have to search for the silver lining... I should start thinking about it now, so I have an answer when it is all to horrible to continue - call it what you will negative, pessimistic, preemptive, assertive, organised.  I'm doing this medication, with irritating side effects now, to maintain the standard of life I have now, to be able to enjoy my family, my husband and kids for as long as possible.  To save my kids from having to look after me until well after they are no longer children and hopefully never at all.  I'm doing it now, so that in the future I will still have mobility and cognitive function.  Yeah, but mostly for my beautiful children and husband.

PS I love walking in the rain. 

Thursday, January 6, 2011

Peanut and Pecan Pie

I have made this yummy pie twice this festive season and both times people have asked me for the recipe.  It's not very hard to make, in fact it is very simple and you could probably substitute, your favourite nuts for the peanuts if you wanted too.

1 x quantity of sweet pastry (see below) or a pre-made sweet pastry shell would probably do.  I made my own.

1/4 vanilla pod or a few drops of vanilla essence.  I used essence because I had it already.
30g sugar
30g butter, softened
3 eggs - the recipe calls for 3 x 61gram eggs
3/4 cup maple syrup - use the real Canadian stuff people, it's expensive but well worth it.
150g pecan nuts - I used maybe 50g extra as well, a mix of halves and pieces
50g raw peanuts or whatever nuts you might like to try

You need a flan or pie tin that is about 25cm in diameter.

Pre-heat your oven to bake at 200 degrees celsius.

Roll out the pastry to a thickness of 4-5mm and lay it over the pie tin.  The pastry is very fragile and soft, so it will break... just patch it up.  No worries.  Press the pastry into the sides of the tin and trim the edges with a knife.  Place in the freezer for about 3 minutes before baking in the pre-heated oven for 8-12 minutes or until base is dry.  On both occasions I went over 12 minutes - just keep an eye on your base or it will burn.

Meanwhile, cut your vanilla pod in two lengthwise and scrape the black vanilla grains into a large bowl (or open your bottle of vanilla essence and add a few drops to the bowl!)  Add sugar and butter, then cream for about 3 minutes.  Mix in eggs, one at a time, then add maple syrup and stir until well combined.  Stir in pecan and peanuts.  Pour into the pre-cooked pie shell and bake at 200 degrees for about 30 minutes until the filling is set.

Too easy right?

Sweet Pastry

50g almond meal
150g unsalted butter, cubed and softened... I'm sure I used salted butter - oops!
1 egg - again 61g
2 drops of vanilla essence
a pinch of salt
100g of icing sugar
250g plain flour

This quantity makes enough pastry for two 20-22cm in diameter pie bases.  I used the left overs to make small cookies.  Just roll small balls in your hand and flatten onto a tray, put in the oven for, maybe 10 minutes - keep an eye on them, because they go from just right to burnt in a blink!

The recipe says that it is good to make the pastry the day before it's needed. 

Mix together the almond meal, butter, eggs, vanilla and salt until butter is softened and all ingredients are well blended.  Add in icing sugar and flour and mix well.  Using your hands form, roll the pastry into a ball, flatten a little and store in gladwrap in the fridge for at least an hour before using.

So there you have it.  Make away and prepare yourself for compliments!!

Mr C has caused, what seems to be the normal issues the last couple of days - stinging and redness.  It seems that in the hips, heat does not prevent lumps under the skin.  The lumps are not huge, but they are in existence.  Maybe the heat prevents them from getting so big.  The test will be tomorrow on my thighs.  The itching continues...  I think it takes 3 days from injection to itch.  The itch seems to last a day and the following morning the next site starts to tickle!  I have some Soov to try... it has lignocaine to anaesthetise the site.  Go go Soov.  Giddy up!

Tuesday, January 4, 2011


Mr C and I have had an interesting couple of days.  Remember the big welt on my right thigh from 3 days ago?  Well it is still red... it's not the original size of the welt, probably half the size now.  There is also a lump under the skin too and it has started to itch.

Yesterday, in an effort to miss the itching site on my stomach from about six days ago, I asked Ryan to inject me in my stomach about 15cm away from my belly button, maybe 5cm in from and above my hip.  He said are you sure that's going into fat and I was fairly sure.  But it hurt like... hmmm um kicking all your toes at once (???).  It's didn't do the stinging so much, but instead it was a slow burning throb.  It was a hard feeling to explain.  I don't think it was such a good spot... due to the pain and because every time I moved, the site stretched and hurt all over again.  It isn't red though... I put heat on the site instead of a cold pack, which seems to bring up a welt.  The heat doesn't stop the stinging, but it does seem effective in combatting redness and welts.

Today Mr C went into my right hand side stomach.  I used heat again and there was a little redness, but it went away.  So far there is no welt or lump.   This is good news!

The side effects, really aren't that big a deal.  The redness and welts are all in places that are covered, except when I go swimming.  I guess if I am swimming and I get asked about the welts - it won't be a stranger asking, but an acquaintance or friend.  I don't think I will have any issues with saying I am on medication for MS... I doubt I would have an issue telling that to a stranger for that matter.  The itching so far isn't shocking.  I can stop myself... but I will be asking my MS nurse for a list of creams that work or an antihistamine to try. 

It's no big deal if Mr C is working and doing it's job. I won't know this for 6 months when my next MRI is scheduled and until then I have to believe it is working and working well..

Sunday, January 2, 2011


We went to the beach today... it takes about half an hour to get there, so its a bit of a big deal.  We decided to take Humphrey, our toy poodle because he's been seeing the inside of his crate a lot lately.  We all put on our sunscreen and hoped we wouldn't fry in the 40 degree heat predicted for the day.

When we made it to the beach we were shocked by the number of dogs and people frolicking on the sand - holidays and weather probably contributed to this...because usually you would have the beach pretty much to yourself.  It was way more fun having different dogs and their antics to look at.

Humphrey was in his element once he was let off the lead.  He raced around playing with all the different dogs.  I didn't see any doggie aggro at all.  I was surprised when he launched himself into the water and mentioned it to Ryan, but he said, well actually I take him swimming in the river regularly...

I took the camera out to take some pics of how happy Humphrey was running around and managed to catch him playing where the waves were breaking with a couple of other dogs.  The others dogs mustn't have been concentrating on playing as hard as Humphrey because they all escaped being dunked, unfortunately Humphrey didn't!  Poor little drown rat... I almost caught it on film, you can see the wave just breaking on him!  I had never given much thought to my dog being dunked before - do I need to learn doggie resuscitation?

To the left is my whole family at the beach, plus Humphrey smiling for the camera.  I really enjoyed myself at the beach -  all the conditions have to be just right for this to happen though - hot enough, nice calm readable sets and no wind.

Mr C went into my right thigh today.  It stung, so I put some ice on it, knowing I would come up in a welt... I guess the ice stops the copaxone from dissipating quickly (or something).  However I wasn't expecting a welt the size of Ayers Rocks on my thigh.  My left hip site has been driving me bananas with it's itching today.  I try my hardest not to scratch, but sometimes I give it a light tickle, which probably makes it worse.  From a quick look on the net... it seems that not much helps with the itch.  So I hope after a few weeks my body will become more accustomed to Mr C and go easy on me.

Saturday, January 1, 2011

Ten Year Tale on New Years Eve

Last night was New Years Eve.  We went to an awesome party, just 5 minutes walk from home.  As the DJ turned his music down (yeah there was an awesome DJ awe-some) and the new year was counted in... I looked over at Ryan and remember that right then was our original anniversary.  After we all jumped around, kissed and hugged I set about the business of adding it all up... that is working out how long Ryan and I had officially been a couple.

I remember the first time I spoke to him.  I had just flown in from Vancouver at 6am and I was supposed to be going to work - I told the boss I was flying in a day or so earlier than I had.  But it wasn't what occurred, and thus I had to call work and say, oh I'm still jet lagged from flying in two days ago, so I won't be coming in today.  I wanted to talk to my boss, but instead I got Ryan - the new boy, who was shipped in to fill my spot while I was away.  My boss was busy so I had to ask him to pass on the message.

I was working in a medium security male prison at the time.  So he wasn't a new "boy" - he was a screw, who was sitting in my seat pretending to be smart and write work release reports and parole reports.

When I made it into work... I thought I'd get there early to make up for not showing up the day before.  But I was so early that the only person in the office was Ryan and he was literally sitting in my seat.  I introduced myself and told him he was sitting in my seat and that he'd have to move, of course!  He wasn't happy, but he moved.

I remember gossiping during a break with my work colleague, Donna.  She said, you'll either really like him or really dislike him.  I really disliked him - he was arrogant and painfully logical.

One day, after he'd been working in the office a while, he came into work and stunk to high hell like alcohol... he wasn't drunk, but clearly had had a big night and hadn't showered.  He'd been in to see the boss and then came out and told us what had happened.  He'd been caught on his road bike for not stopping at a round-about (for the police car mind you) and then blew over the limit.  I remember just looking at him and saying, oh Ryan.  He went to court, had to pay a $900 fine and lost his license for 6 months.  The judge threw the book at him because he was a prison officer and should have known better.  Unfortunately for Ryan, this meant he couldn't get to work because he lived an hour from work, unless he car pooled with Donna and I because we all lived in the same area, and Donna and I already had this arrangement.

Donna and I took turns at driving and Ryan always sat in the back.  To begin he didn't really take part in our conversations... but as we all got to know each other we'd include him.  I remember having some quite personal conversations with him and I even changed my mind - I did like him afterall.  Sometimes it was just me driving him to work and I remember just being calmed by him in some weird way.  He says now that he used to love sitting in the back seat because he could watch me without me knowing it... and I can say I really didn't.   

It came up to Christmas and I had chrissie eve drinks at my apartment with the people from work.  It was at this point that I knew something was going on for him that included me. 

Really the rest is history, we got together at Donna's New Years Eve party 10 years ago.  It nearly didn't happen though because Ryan had other plans for the evening and said he might drop by on the way home because he only lived 5 minutes from Donna's place.  Donna called him and he was home already... he walked over after midnight and then the rest is history.  You'll have to ask Donna for the details!

Mr C has been driving some of my injection sites crazy  I have one spot on my stomach and another on my hip that itch badly. There is another spot on my stomach that intermittently itches too. Grrrrrr!  In all the places I injected!  Ryan injected my left thigh today and it's ok.  Bit of a 20 cent piece welt though.  I'm wondering if my body has developed an immune response to Mr C... I guess that is what it's supposed to do and why I didn't react straight away.