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...

Kid Differences

Today I thought I'd write about the differences between my son and daughter.... I'm not sure if it will be possible to extrapolate this further to the difference between boys and girls - perhaps you can leave me a comment and let me know what you think.  I'm writing about this due to a little incident that happened yesterday, but more about that later.

So the first difference is the smell of a dirty nappy.  My son, Sabin positively stinks to high hell!  I always know he has a poo, because I can smell it from the other end of the house.  I discovered this difference fairly early on, when he was a baby... it's only getting worse.  I can only guess that he's trying to catch up to his father or his Poppy.  He has also started doing loud-ish farts, to which he looks over his shoulder at his nether regions.  If you ask him where the sound came from he promptly points at his bottom.  As a baby, my daughter, Chynna had pleasant smelling poo in comparison.  I do not remember her "passing wind" (she's a lady) as an 18 month old.  However she is making up for it now, as she likes to sneak up on me and leave little toot gifts.

The next difference is in my kids eating habits.  My daughter eats like a bird, and not a seagull either - a hummingbird!  She eats little and often.  Whereas my son too, eats like a bird - a GANNET!  Which is a seabird that eats large quantities of big fish whole.  He is the type of eater, who likes to have his mouth absolutely full, so that he can't shove another thing in and then he lets digestion occur in his mouth.  He would eat all day if it were possible.  I have noted that he is starting to get a little discerning with what he eats... no green or orange tortellini for him... just the usual yellow coloured ones thanks mum.  At least he eats a lot of what he likes.  My daughter is what I'd call fussy.  She even has an eating chart, where she gets a tick for trying new food with a reward after 7 new foods.  She would be lucky to get one tick a week.  It is the bane of my life!

My children have quite different temperaments.  Chynna is excitable and jumps straight into things and Sabin is calm and a bit slow to warm up.  He likes to take in the whole situation before acting.   I am excitable (what a nice way to put it) and my husband is calm. 

At 18 months, my daughter did not want to sleep.  She would cry, yell and carry on in effort to avoid sleep.  She did not sleep through the night consistently until 2 maybe 2.5 years old.  However (and thank God) my son is a great sleeper (touch wood).  He started sleeping through the night at around 8 weeks old.  Even now, he can be awake in his cot for an hour, but he doesn't cry.  I hear him talking to himself, sometimes he calls out, but generally we ignore him and he just goes off to sleep.  My little minx would have cried the house down and interrupted the neighbour’s television viewing.

My son is a helper.  He wants to help me take out the washing, carry in the shopping, feed the chooks, fill the washing machine, take out the rubbish etc etc.  This behaviour is a constant source of amazement to me... he just seemed to know that it was polite to help.  If I ask him to pick up his books or take his shoes to his room he usually obliges.  Chynna's answer to most requests is a big NO.  I know this is her age... but she was not helpful at 18 months old either, not in the way Sabin is.

I think my children also play quite differently.  Sabin likes to climb - Chynna never climbed anything.  Climbing is a testing activity - for the parent anyways, do I step in now, is he going to fall, will I be able to catch him... I prefer no climbing as a rule.  Luckily they both have the ability to entertain themselves.  Chynna can turn mundane items, like cutlery into characters for her own private fairy tale.  While Sabin is happy tipping the tea set on the floor for the 100th time this hour.  Sometime I think he'd fit as a candidate for OCD.  He does things over and over (very normal behaviour for kids his age) and he likes things just so.  One day I went into his room to collect him from his nap and he was sitting in the corner of his cot.  He stood up and pointed to a book on the bed in his room.  I put him on the floor and he picked up the book and put in the bookcase.  I bet it was irking him as soon as I put him in his cot.

Sabin is rougher than Chynna at 18 months.  Just a few days ago, I was in the kitchen doing the dishes, when Sabin marched in, opened a drawer with the large utensils in, grabbed the big whisk, closed the drawer and then came over to me and whacked me on the legs with the whisk.  He lined me up with a big tennis swing... Yesterday he marched into the kitchen with much purpose, opened the drawer, grabbed out a wooden spoon, closed the drawer and went to chase Chynna with it.  I stopped him, and then he decided to whack me.  My husband pondered what he must have been thinking when he opened the drawer, because it looked like the spoon grabbing was premeditated.

So back to the incident from yesterday... in sticking with the roughness theme, I was wrestling with my bullyboy.  It all began harmlessly enough, I was lying on my back and he was using his arms to crash onto me.  I noticed that he started to drop his knees in first and then crash on top of me with his arms.  I had a bit of a giggle thinking, what will happen when bullyboy is three and does this.  Then he changed tact.  He crawled over me.  I'm not sure what he was intending to do next, but he put his hands on my chest and I guess he was getting on top of me, but one of his hands slipped and his big forehead whacked me on the nose.  I sat up so quickly that Sabin slipped off to the floor.  He let out a wah, but that was it.  I raced to the freezer to get ice and a tissue in case the drip I could feel in my nose was blood - it wasn't.  It's not often a girl cops a head butt, but I now know I should avoid one at all costs.  It hurt so much I called my husband to cry.  He said, it's all fun and games until someone gets hurt - yeah usually the child, but in this case me!! 

My nose is still sore today.  I bumped it a few times with my sunglasses and it put me through the roof.  I can say that my daughter never inflicted any injuries on me quite like this.  I think in the future I will leave most of the wrestling to my husband or I may need to invest in a helmet to protect my nose and eyes!

My kiddies are different.  I'm glad.  How boring would it have been if they were the same?  I have really enjoyed being their mother so far, they are a constant source of inspiration, amazement and humour.


PS.  I'm not sure I would be writing such lovely things about them if my nose was broken...

Running Into The Wall

When I was pregnant with my daughter I was insistent on having a breathing monitor.  For those of you who have no idea what I am talking about...it's a plastic pad that goes under your baby's cot mattress and an alarm goes off if it doesn't sense movement, this movement is your child's breathing.  The one I wanted was about $350.  Most people thought it was an unnecessary expense...even my husband at one point.  But if you are an anxious first time mum, you will just about pay anything for piece of mind.  I was lucky that the word got around our families and gift vouchers were given at my baby shower, so that I could get my piece of mind baby monitor.

I read the instructions and noted that the alarm might sound for no good reason.  I thought how could it sound for no good reason?  Either the baby is breathing or it's not, so it seemed to me that the alarm could really only be set off one of two ways - there is no baby in the cot or there is no movement in the cot when the baby is in it.  I asked my husband what I should do if the alarm sounded because it would require some serious action.  How would I speak on the phone and perform CPR?  In the end we went out and bought a telephone with speakerphone.

Each time I placed my daughter into the cot I pressed the button to turn the monitor on – “click click” and then a little red light would flash in time with her breathing.  Having the breathing monitor, I felt that I could sleep wholeheartedly... and I really needed that because my daughter was (and still is) a tiny little minx, who needed very regularly feeding and cuddling to sleep otherwise she would scream the house down.  I feared that the “click click” of pressing the on button would wake her up... sometimes it did, then I would have to go through the whole rigmarole of getting her off to sleep again! I would be furious - why do you need a sound when you have a red light to indicate that monitor is on?! 

I can't remember exactly how long it was before the monitor sounded in the middle of the night.  I heard the sound long before I registered what it was.  I sat bolt upright, shoved my husband and froze.  He got up and went quickly to the nursery.  When I regained my wits I jumped out of bed and ran to my daughter.  My husband had ascertained that she was warm and breathing but squashed in the corner of her cot, which meant that her miniscule weight was no longer registering on the pad.  My pounding heart took several minutes to take in this information - a false alarm with the baby in the cot and still breathing.

Another night the alarm sounded.  I leapt out of bed and ran for the doorway.  It was unfortunate that I was still half asleep and ran flat-tack into the wall.  My husband mumbled some words as he stepped over me and strode out the doorway.  I just wanted to get to my daughter quickly... however after running into the wall I read that the first few minutes after waking is like being drunk.  My husband suggested that there was no need to run screaming down the hallway when the alarm sounded otherwise accidents might happen and then it would take longer. I planned to follow his advice.

The next time the alarm sounded I carefully sat up and navigated my way out of the bedroom, then ran down the hall.  But clearly you are drunk when you first wake up because I tripped over my feet, banged my knee and rather gracelessly fell to the ground.  I got up and made it to the nursery and wouldn't you just know it.  My daughter was warm, breathing and squashed up in the corner of her cot.  I turned off the alarm, grabbed the bottom of her sleeping bag and dragged her to the centre of the cot hoping she wouldn't wake up, then I turned the alarm on again.  On my walk back to the bedroom, with a slight limp... I made light of what my husband said.  Stay calm because if I have a cracked head, I might be the one requiring an ambulance.

When baby number two came along, we had the monitor serviced.  My husband was adamant we didn't need it.  But I had read SIDs was more common in boys than girls... so obviously it was imperative that we have the monitor.  My son was, (and is) a big bullyboy... but he still managed to be warm, breathing and squashed in the corner of his cot many many times.  The false alarms were all about position.

I learned after bub number 1, that 100% of the time the alarm was false, so I could calmly walk to my son's  room to switch the alarm off.  He would sleep through the alarm, the repositioning and by 8 weeks old he was sleeping through the night.  So after several of these false alarms waking me up for no good reason, and my son not waking up I decided to trust that my son was a big healthy boy and that I wasn't over-wrapping him or laying him on his stomach and that he was in no way exposed to cigarette smoke so I stopped turning on the alarm for good. 

I would absolutely recommend a breathing monitor to someone who was thinking of getting one anyway. If you are thinking about getting one, then perhaps you are the type of person, like me, who needs piece of mind.  It will help to put you at ease and sleep better... maybe just expect to graze your knee a few times or run into a wall here and there.

Here are some pics I took at 5.30am the other day.  I'm not much into sunrises... I guess because I am not normally up to see them.  But as you can see it was an impressive sunrise.  Cheers!

Box 3

Yesterday I started my third box of Mr C.  That means I've had a grand total of 56 doses... 58 including this morning's injection and the day befores shot in my blubbery bum.  It has not been a hard 58 doses, but I think it's all about how you think about the medication.  I am adamant if I was anxious or angry that I would not be able to say that taking the medication is fine.  Yes there are some humongous welts, yes there is some itching and yes the needle does sting... but this medication is helping me stay well for longer.  It’s obviously not as good as never having had the disease, but it's treatment for this menacing, low down and down right sneaky disease.

I would like to add, that I am finding that I am not as itchy as I was (touch wood) and probably half the time now, the sting of the medication entering my body is almost non-existent depending on the location.  Sometimes I'm not sure where to put the tissue to apply pressure because there is no big sting.  A little baby sting might develop, but it is almost unnoticeable.  Unfortunately the welts are still pretty big on my thighs and I get an occasional bruise, but as I am not in the habit of wearing short skirts or hot pants I think I might possibly be able to live with them.  When I have to wear bathers for my son's swimming lessons once a week I could come up with something “smart” to say, like I put my cigartettes out on my legs or I was holding my daughter down to do her hair and she bit me.

The other thing I would like to mention is the price of Mr C.  I don't think I have ever spent $1092.65 on myself in one hit for two months running ever or even anything close to that.  That is $39.02 per injection!  So it makes me happy to say that Mr C is PBS covered and costs my family a grand total of $34.20 a month or $1.22 per injection or $410.40 a year.  I think the yearly amount covered my bill last year for all the presents I bought for all the friend's birthday parties Chynna attended.  Oh well no gifts this year...

Symptoms update... on and off for about 2 weeks now I have had a buzzy right foot.  It's a hard sensation to describe as most MS sensory symptoms are.  How's your imagination, sort of like pins and needles super fast and not so big.  One night my left foot ached like I had been standing on it all day without a break and I've had some Lhermitte's, but this is a fairly standard symptom for me.

A few days ago I was at the computer, catching up on blogs and checking out my uni timetable for perhaps an hour when I noticed that I couldn't really read my tutorial details.  It seemed like my sight had a furry, buzzy, shakey halo in it.  It was interrupting my reading by completely blocking my vision of a word in a sentence.  I got up from the computer - very calmly I might say, and looked at a newspaper on the table and I still couldn't read the sentence.  Obviously the first thing in my head was, so this is how your vision goes (with MS) closely followed by staring at the computer screen has done this, although it has never happened before.  So I decided to ring my husband.  I started the conversation with you are not going to believe this, but my uni day has changed from Tuesday to Thursday.  There was some discussion around this... about who would now be available to look after our son.  I introduced the eyesight issue with, but this probably isn't going to matter much when I won't be able to see the board, my eyes are doing something w-e-i-r-d.  I can say for once, Ryan was the one who was more in a quandary than me.  Make sure you don't drive the car - well actually I thought I'd drive into the city and pick you up - hello - of course not!

I called to speak with my MS nurse, but it was her day off and so I spoke to another one, who called me back after half an hour.  By that time my vision was restored.  In theory, for it to be considered an MS relapse it should last at least 24 hours, so I guess I fall short by 23 and a half hours!  Maybe it was looking at the screen for too long, but it's never happened before.  The nurse I asked if I was tired, I wasn't but I did mention I was feeling off and gastro had taken up residence in my home.  The following day the nurse called me again to check up, but my vision was normal.

What to do?  Make a note and tell my neurologist about it at my appointment in March.

Have a great weekend.

Vomit, Illness, Relapses and Pseudo-Relapses

My daughter woke up at midnight last night.  She is well trained, and called for her father (I answer the calls of our son).  It sounded like she had a bad dream, because she had her waily frightened voice on.  She and Ryan had a conversation, but I couldn't really hear what they were talking about on the monitor.  When Ryan finally got back into bed, our conversation went like this, bad dream?  Sore tummy.  Oh, Eve was sick on Saturday.  We both then rolled over and did our best to go back to sleep.  What should have happened was, oh Eve was sick on Saturday, ok I'll get up and fetch a bucket for our princess.  I was hoping he would do it and I bet he was hoping I would do it.  But of course, 15 minutes later when we were asleep, there was a cry over the monitor, Daddy...Daddy I'm going to spew!  Ryan fumbled for the monitor and said hold on because he was coming... but it was all too late.  Princess had puked in her bed.

I rather reluctantly got up and followed Ryan down the hall.  I hate vomit.  I hate the way it looks, I hate the way it smells, I hate the way it feels when you vomit and I really, really, really hate that it nearly makes you vomit yourself when having to deal with someone else’s vomit.  I rarely vomit - if I do you can safely assume that I am dying.  It was very unfortunate for me that my beautiful boy, Sabin, suffered badly from reflux.  I was vomited on more times than I'd care to remember - not like a little dribble of milky spit, but usually a full feed of half digested and curdy milk, almost after every feed.  We started to feed him solids at four months, so the vomiting progressed to foody-milk vomits.  I have never vomited in my own hair (and never plan too), but my son has.  I am surprised that I never threw up myself...  I guess in the end I just kinda got used to it.  Thank goodness for Losec.  My groom and I had a fairly good routine worked out.  He would take Sabin and clean him up and I would best work out how to get my clothes off without covering myself further in warm gooey vomit.

Back to the princess then... when I got into her room, Ryan had scooped her up and rushed her to the toilet.  She said I'm going to be sick again, Ryan muttered, just wait... but then I heard the splatter on the ground - too late.  He cleaned her up and I stripped the bed.  I really wanted to help more by washing the vomit off the sheets, but I couldn't do it.  Ryan is my hero.  He washed the vomit off the sheets and cleaned it off the floor.

Half an hour later, my brave little princess was back in bed with her bucket.  She didn't complain, but I think our dog Humphrey assisted in this department. (He always looks miserable in photos - but he's far from it in real life).  He loved her with a snugly cuddle while I was remaking her bed.  Whenever my kids are sick, I always feel like I am a cruel mother because I keep my distance.  Perhaps any mother with MS might understand this... I don't know.

When my friends came over for dinner on Saturday night and mentioned that my goddaughter Eve had projectile chucked and that poo had leaked out her nappy, alarm bells rang.  I told myself to stay calm.  It would have been rude to ask them to leave.  I have this whole thing about how I will cope when my kids get sick – SICK KIDS FREAK ME OUT, especially ones who are going to puke everywhere or have a fever, or have such a badly blocked nose that they wake up constantly throughout the night.

But the other reason I tend to freak out is because I might get sick.  And for anyone that has MS this could ramp your immune system into a frenzy of action, whereby it decides that your central nervous system, in particular your myelin surrounding the nerves is the E-N-E-M-Y.  Infections such as, colds, skin infections and urinary infections can bring on a relapse, or a period of time whereby my immune system is running rampant, destroying perfectly healthy and indispensable myelin causing sometimes irreversible damage and thus the unpredictable symptoms of MS.  MS is an immune-mediated disease, hell it may even be an autoimmune disease but the specific antibody or immune reaction has not yet been identified.  Other triggers maybe vaccinations, although I still get vaccinated and stress and obviously, I still get stressed.  These triggers are still debated.

While I'm on relapses, I thought I'd write about pseudo-relapses because they are a pain in the butt and sometimes confusing and scary.  When someone with MS experiences a rise in their core body temperature by as little of half a degree say from hot weather, exercise or fever they may experience a temporary increase in their symptoms.  Once the core temp is back to normal the symptoms subside.  No extra damage is done, its just nerve impulses in hot conditions have further trouble travelling along damaged myelin.

Anyway my princess stayed home from school - we ummed and ahhed about it, then I decided that I didn't think any of the other mothers I know would appreciate having to get up at midnight to deal with spew, especially if their husbands are not as accommodating as mine.  She's driving me crazy, but she is fine.

Newly Diagnosed Seminar

On Friday I went to a Newly Diagnosed Seminar at the MS Society in Wilson.  I know I'm not newly diagnosed, but I am new to medication. I have never been to any MS group, not even when I was newly diagnosed - that would have been way too confronting for me.  I applaud all those newly diagnosed people that attended - how courageous of them.  There was maybe 30-40 people of all ages, although skewed towards younger, maybe three quarters were women.

My neurologist was speaking, so I was keen to hear him speak publicly.  He was much the same as in a consult - scientific, (maybe hideously so for those not that way inclined) and humourous.  I sat next to a beautiful blonde girl of 30 who looked vulnerable and anxious (I know she is a woman at 30, but her vulnerability seemed to peel back the years), she came with her mother.  The woman on the other side, looked much older than her age, she was dressed older.  She too was not newly diagnosed, and she was not new to medication.  She came to hear my neuro speak as well.  She was surprised that I had 2 young kids.... that's always a good thing.  I'll put that down to looking younger than I really am, as opposed to looking too old to have kids!!

So I think what I will do is just list some of the things I wrote down in my notes.  Yes, I know.  I am a note taker... I can't help it.

The neuro put up a photo of his identical twin boys.  There is a genetic component to MS.  If one identical twin were to get MS, the other only has a 1 in 4 chance of getting it over a lifetime.  Thus it is not wholly genetically based.  My daughter's chance of getting MS in her lifetime is 1 in 50 and my son's is 1 in 100.  My daughter's chance of developing breast cancer is 1 in 7.

More people are being diagnosed with MS due to better technology - thus the incidence of MS is increasing.  Some people's MS is so mild, they don't know they have it.  Some people die of natural causes and MS is found during their autopsy.  The biggest risk factor for getting MS is knowing a neurologist.

There has been a general dismissal of the MS latitudinal pattern - it only fits in Australia, but not in other countries.

There is no consistent and reliable relationship between low fat diets and a reduction of MS attacks.  In fact, there are a number of high fat diets recommended for treating MS as well, as myelin is a fat.  Eating fat could make more fat available to replace lost myelin.  It doesn't work either!

Smoking increases relapses + + + + +
Stress, while difficult to measure, seems to play a role in MS + + + +
Vitamin D and MS + + +
Omega 3 ?
Omega 6 +
Low fat ?

Manage stress, exercise and have a healthy diet = healthy life.

A virus that causes MS has never been identified.  A number of viruses are linked to risk of MS.  Epstein Barr virus in particular.

MS drug trials difficult to understand, even for neurologists specialising in MS.  End points are very hard to define unlike for cancer drugs (cancer gone) or the oral contraceptive pill (not pregnant).  MS drugs can help prevent issues in the future - no immediate relief.  50% of what you hear about MS is correct, but it is not always known which 50% is correct.

Arsenic was used to treat MS up until 1956.  There are 2 treatments, those that work and those that don't.  If it works neurologists will prescribe it.

Most action with lesions occurs when first diagnosed - less with time.  If we wait to long to treat MS, may get no result.

Copaxone reduces relapses by 35% - inconclusive as to mechanism of action.

Tysabri: one IV per month.  PML virus a complication in years 2-4 of being on Tysabri.  Not everyone has PML virus, working on test to detect it.  One in two develop antibodies to Tysabri after 12 months, thus it can become ineffective.  When you stop Tysabri, no worse off as far as relapses as you would have been before starting the medication.

Being alive is dangerous.

New drug: Fingolimod (Gilenya) - tablet, not currently on PBS (usually takes 12 months).  Not chemo-toxic.  Works by blocking call out signal to white blood cells and holds them in the nodes for longer.  Well tolerated.  Increased risk of contracting shingles.  If you haven't had chicken pox and you contract it while on this drug, you will die.  Thus must check immunity, if not immune take vaccination prior to commencement.  Must check heart rate and vision after 6 hours.  Neuro's excited about this drug.  Novartis pod cast on Gilenya, Monday Feb 7, 6pm.

On evidence Tysabri better than Fingolimod, although Fingolimod better than sub-cutaneous injectable drugs.

New drug: Cladribine (Movectro) - dose personalised to weight.  Tablets for 5 days, then a month later may take another 5 tablets, then that's it for a year.  Re-test and may need a top up a year later.  Drug keeps working over time by knocking out lymphocytes, which means it takes out one step in the immune system attack on the central nervous system.  Committed to treatment for 2 years, whether working or not - unsure as to when or if you can start a new treatment.  Not as yet PBS listed.

Immunity works like a symphony - in tandem.

Lingo inhibitors - promote re-myelination.

Stem cells.  Only for mice so far.  1in 4 of baby stem cells when transplanted will turn malignant.  It's never been shown to improve disability.  Very hazardous - high percentage of death after transplant.

CCSVI - getting much publicity.  Venous congestion doesn't exist in all MS patients.

So that's my notes.  Some of the things mentioned, will be a refresher for most people with MS.  The stuff about the new drugs is news to me.  I guess now I have started medication, I may become more interested in MS medication advancements.

On the way home from the seminar, all I could think was, thank God I am not newly diagnosed.  It is a truly horrible, horrible time.  When I was in hospital, after my lumbar puncture and was told I had MS, even though I self-diagnosed and thought I was prepared, I still needed to be sedated.  It forces you to look at things like, how little control you have over your life and this lack of control is no different than before you were diagnosed... it's just that you are forced to reckon with it.

If you are newly diagnosed, I am sorry.  But know this piece of advice that was given to me by a good friend, during a teary telephone call about a man, which with much greater hope and patience I adopted for my MS diagnosis.

One day you will wake up and MS won't be the first thing you think about.

I can't tell you when it will happen, but eventually it won't be the biggest thing in the front of your mind, invading your every thought and suffocating you with it's heavy uncertainty.

Another great friend gave me this advice, which I like to think about from time to time.  God doesn't give you more than you can handle.  I'm not particularly religious and God could be whatever the word means to you, but it has assisted me in some dim moments. Good luck my friend.

Bad Hair Cut

Recently I mentioned that my son had his hair cut by an exuberant Asian hairdresser and I also mentioned that I am a little frightened by exuberant Asian hairdressers.  So here is my explanation...

As you may or may not know, in 2005 Ryan and I lived in China.  We were teaching English at Wuxi Foreign Language School (WFLS) in Wuxi.  Wuxi is considered a small city of 4.5 million people and it's about 130km northwest of Shanghai.  It's known for it's Huishan clay figurines, Yixing teapots and ceramics, Taihu Lake, it's Grand Buddha at Ling Shan, it's portion of the Grand Canal, it's various gardens and it's Wuxi cuisine (yum yum) - ball-like oil gluten, honey peaches and white fish - etc etc!

On our first morning in Wuxi, Ryan and I were snuggled up in our sleeping bags - sound asleep.  Suddenly we were awoken by banging, like bombs going off.  Everyone was still a little tense about 911 in the US, including me.  All I can remember thinking was oh no, not here, not on our first morning.  We struggled out on to the floor to peep out the window to investigate.  We couldn't see anything, except red and white paper falling from the sky - (ever so) slightly reminiscent of 911.  After maybe a couple of minutes it all stopped.  I'm not easily frightened, but when you are in a foreign country where hardly anyone speaks English and you don't speak Mandarin... you start to second guess the wisdom of taking such a job when you think you are under attack.  Later we questioned our Chinese best friends (the Chinese teachers, who taught English at WFLS) about the "incident", only to be told it was probably fireworks as part of the Chinese New Year Spring Festival.  As time passed we learnt that the Chinese use fireworks regularly for many occasions such as weddings and the opening of new restaurants - to ward off evil.

But I digress... we had been living in China for about a month, when I started to notice that many of my Chinese besties were coming to work with new short hair... Lucy, in particular went from drab shoulder length hair to fab with a short pixie-like haircut.  I had been thinking that my own hair needed a trim, so I asked Lucy where she had hers cut, and as luck would have it, it was a salon in the new and flashy Baoli Shopping Centre across the road from our apartment.  I figured if the hairdressers could cut Lucy's hair into such a cool style, then they could surely cut the layers of my shoulder length hair.

On the weekend, instead of waiting for a Chinese bestie to accompany me... I eagerly dragged Ryan to the hairdressers.  It was brightly lit, with white fixtures - magazine worthy.  I didn't have to wait long before I was seated and a cape lavishly thrown around me.  All the hairdressers, mostly males gathered and handled my hair.  Then a young man, who looked like one of Ryan's senior students, stepped forward from the throng and asked me what I would like to have done, in his sketchy, barely there chinglish.  I said I would like a trim, perhaps about this much taken off - indicating at most 5cm with my fingers.  The throng parted and another man appeared... he looked to be in his 20's, but I was assured that he was the owner of the salon and he would be cutting my hair.

I flicked through a magazine - how very trusting of me, when the cutting began!  Ryan was seated behind me.  Snip, snip, snip.  Snip, snip, snip.  I noticed that there didn't seem to be any clips deployed to hold my hair out of the way or hold it in sections.  But hey, I'm in China, right - they do things differently - in this case, freehand.  Mr Hairdresser-Owner moves away for a second and Ryan pipes up, he seems to be cutting a lot off.  My reply was, it looks that way because they are doing the layers. Instead of putting my nose back in the magazine - which was fully in Chinese anyway... I pay some attention to what is going on.  And yes, indeed, he did appear to be cutting off a lot of hair! 

Of course by this stage... there isn't much I could do.  My top layer is probably 3cm long and Mr Hairdresser-Owner is still happily chop chop chopping away.  Soon I have the proverbial mullet - long back and short sides.  Every so often exuberant Mr Hairdresser-Owner, steps back to admire his work.  The pièce de résistance was an asymmetrical fringe.  I'm pretty sure, at this stage, I was screaming on the inside.  It was probably a good thing for Mr Hairdresser-Owner that he couldn't ask me if I liked the cut and he was clearly oblivious to western mannerisms and body language as he smiled and bounced around, while I stood there utterly deflated and on the verge of tears.  What’s worse, I had to pay for this highly stylish and current monstrosity that was on my head and surrounding my face.  If you have ever seen any of the Japanese Harajuku girls with their stereotypical Asian hair styles - that is how I felt minus the wacky costume! 

As soon as we left the salon, I told Ryan I was coming back tomorrow to get rid of the mullet.  He cacked himself and quickly took a photo - the one and only piece of evidence that this was the original bad hair cut of many to come while I lived in China.  Chinese hairdressers, just don't seem to get that Westerners and Chinese do not have the same hair.  Chinese have dead straight coarse hair... while I have thick hair that will go all fuzzy if cut too short. 

It wasn't a shock to have short hair, as I'd just spent the last 2 years growing out a short style I'd had for 5 years.  I was thoroughly annoyed that I'd regularly spent $70 to have my mane cut so that it didn't grow out and look like I was growing it out!  I was also very upset that I didn't wait for a Chinese bestie to take me to the hairdressers.  I did wait for one to take me back to the salon a few days later and explain to Mr Hairdresser-Owner that I really didn't love the cut and would he mind lopping off the mullet.  I can tell you, that unless my body language read was off, he was not happy!

I still wasn't clapping my hands for joy with the result.  I wore a hat when I could.  My husband grew his hair for the year we were away that year.  Most Chinese people we met asked if he was an artist... because long hair on men is common among the artistic clique in China.

So what went wrong???  Were my instructions lost in translation?  Did the 5cms I indicated with my fingers translate to 5cm left on my head?  Or did Mr Hairdresser-Owner get a little too exuberant and excited for his own good?  It’s open for discussion, but I guess I'll never know...

Goodbye School Holidays

My pickle then watermelon then daughter, Chynna, who is four and three quarters starts fulltime pre-primary tomorrow.  I'm a teeny tiny bit sad now, but earlier...

When we came to the end of the kindy year last year, I was very sad to think that my first born would soon be heading off to school fulltime and be on her way to being all grown up.  An assortment of thoughts marched through my mind about this... she won't need me anymore, I won't be as important as her teacher, she'll get a bigger sassier attitude, she'll make friends with kids that I'd prefer she wouldn't and God forbid, what will I do with the time!  I know these thoughts sound illogical and perhaps a tad controlling... but I guess (and hope) that this is part and parcel with being a mother.  It's not a subject that gets a lot of press... I think the only person I've ever really spoken to about this parental transition from part time to fulltime education is my sister - a fair while ago now and my friends who have children the same age as Chynna - who look at me like I'm speaking another yǔyán!

But I realise now why they look at me like I'm speaking mandarin ... the holidays are like 3 months long, in the heat of summer and they are bestowed upon my little minx who has been entertained 5 days a fortnight at kindy.  I just can't live up to that... not even close, not in the heat of summer for 3 months.

"Mummy what are we doing today?" grew old after the first week when she started asking me this first thing in the morning, after we had been out somwhere and at 6pm! "Can we do some painting?" "Can invite someone over to play?"  I have to admit I resorted to calling a quick trip of grocery shopping an outing...  it was all I could do to stop myself from going stark raving mad.

It is really hard to entertain a 4 year old and an 18 month old at the same time.  Their needs are so different.  My son is a very tolerant boy. When he's tired he tries his hardest to keep up with Chynna... but it's not long before he's having a quiet sulk on the ground (if I'm lucky), or (more likely) an unoperatic conniption fit.  If it gets to this stage it is clear to everybody that we have long over stayed our welcome. 

It is just so much easier to entertain one child than two.  I can't really take two kiddly winks to the beach or pool by myself, it's near impossible to supervise two kids at a crowded play centre and there is only so many times you can land on a friends doorstep who has a pool or great playset, even though they say, no, don't be silly, it's fine.  Thus some of the things Chynna and I used to do together to fill in the time are no longer suitable for a crowd of three.

I can tell you, I have been looking forward to tomorrow for about 2 months and 2 and a half weeks!  Luckily, Chynna is looking forward to attending pre-primary, otherwise imagine her clinging to the doorframe for dear life, with two hands, and my big foot planted firmly on her butt shoving her through the door way.  Poor little petal, how tired is she going to be with fulltime school... hahaha suck it UP princess! 

There will be no tearing up at 8.45am tomorrow on my behalf!

Uh-hum... moving along.  I remembered something I asked the MS nurse when she paid me a visit the other day.  I was wondering what would happen if I was to stop Mr C abruptly... would I have a relapse because the decoy would no longer be in the game?  She said an unconvincing no - there is nothing in the research to say that stopping copaxone leads to relapses immediately following its cessation.  Is there anything conclusive about this disease?  I should know the answer by now.