Tuesday, October 23, 2012

Tysabri and Thesis, Both Begin with T.

Canonymous" has given me the little push I needed to get a new post written.  In case you are wondering, check out the comment on my last post.  Thanks Canonymous!

So what has happened in the months since I last posted.  Well I had a bit of a melt down and decided to defer handing in my thesis.  I threw all my balls in the air, so to speak and had family or uni to left drop... and well it seemed rather impractical to drop my family so I decided on my thesis.

I think what happened was in the beginning, my research proposal went back and forth with ethics, putting me several weeks behind.  Then I collected too much data (albeit rather spectacularly); I interviewed too many teens and then had to transcribe too many 20-45 minutes interviews, which put me even further behind.  Then I started getting a bit manic and having trouble sleeping.  Then I started to get concerned my stress levels would adversely affect my new wonder drug, Tysabri's chances of working in the manner that I would like it to work.  That is... halting all new lesions 100 percent!!!  Then I checked my thesis plan and realised I couldn't really write up a first draft, including my analysis and lit review in one month even if had no family and no distractions... got all woozy, walked to school to pick up my daughter in shock, told some friends I thought I needed to defer and then came home and emailed my husband and supervisors.

The general consensus was divided in two, as it was in my head; think of your health and just get the blasted thing done.  The tipping point was my thoughts about Tysabri not working, which my neurologist later tells me, outrageous levels of stress should not have any implications on Tysabri's efficacy.  But just writing this now has highlighted the fact that MS could take my health and not return it.  Whereas what is another year in the great scheme of things?  If my health was stolen, I wouldn't (to varying degrees) be able to work anyway.

So anyways... Tysabri has been treating me well.  What I have noticed is that in the week after my infusion I have copious amounts of energy... well hmmm, copious??  Um, more than normal.  My normal.  That peters out to my normal again, which is not to fatigued levels, which is common in MS...  I am lucky on that front.

I have had a grand total of four infusions.  No one has been game to try inserting a cannula into my hands again, since the first infusion.  I try to drink two litres of water before my 9am appointments so  I have veins that are plump and ready to be penetrated, which on two occasions, since the first was successful, with only my last one not being successful.  It was a bit of a bugger actually, as it was during school holidays and my kids came to observe.  The nurse was showing a trainee nurse my veins and poked around for a bit in the same vein before I smiled sweetly, battered my lashes and said "ouch", when what I really meant was F**K that last move really F****N killed!!!  Of course I couldn't say any of that because Miss Six is allergic to needles... By allergic I mean, screams at the top of her lungs until blood vessels burst in her cheeks at the mere mention of a vaccination. Catastrophically allergic.  So ouch would have to do.  I added some cryptic explanation so Miss Six would not be able to translate it into, shitloads of pain.  The nurse kindly informed her trainee that perhaps she had hit a nerve, which is very painful and would now try a different location further up my arm!

What else you ask, have I been doing?  Well socialising with my family in a manner that is more than grunting, catching up on housework that is for sure (for procrastination purposes only), definitely not writing my thesis and having my hair cut short and lightened! (It's lighter now than the pic to the left).  I know I should be writing my thesis, but I have not even been writing my blog, which on the whole, is fun to write.  I have now broken the spell, so maybe I  can start writing my thesis again now.  It would have been due this Friday!  How incredibly horrific would it have been if I had deferred, but kept writing, only to have it all done by the due date.  Yeah well, DREAM ON sweetheart!

Since my last post I participated in something called Western Mudd Rush.  You can check out its page here... http://westernmuddrush.com/ The video on the home page is from the event I took part in this year.  It was good "dirty" fun and the team I was a part of and it’s camaraderie was the dog's bollocks!  

Ok.  Now I have a favour to ask.  During my infusions I have been watching funny movies on my iPad.  Several times people have asked me what I am watching because I am snickering so much.  I like to laugh in such a serious place... and I hope people get a kick out of me laughing and laugh at me laughing - surely it lightens the mood, right? (Or gives peeps the irrits).  The problem is I have run out of funny movies to watch.  Can you leave me some suggestions in the comments section please.  This will save me wasting time researching funny movies, instead of writing my thesis (ha)!

Oh and I have a little treat for you next post.  I am going to write about my raw apple pie, that some folks have asked after.  Cheers xx

Tuesday, July 31, 2012

Tysabri D.Day... Mostly Uneventful!

So a couple of weeks ago, I had my first infusion of Tysabri.  The decision to swap my MS medications was made in a meeting with my neurologist that lasted perhaps 15 minutes where I was without my most trusted sidekick, otherwise known as my husband. 

I predicted the change, but I didn't predict it would happen in a matter of days.  The previous night I slept for a grand total of 3 hours... so pretty much my head was spinning wildly out of control at the news.  I had previously given blood for some research, which tested for the JC virus so this was not a hold up. I could have been admitted for the infusion within 3 days.

However as my husband, Ryan was on the other side of the country and he was none to pleased that I would one, make this decision alone and two, attend the treatment on my own, I pushed my appointment back an extra 2 days.  As there really wasn't a decision to make, no other medications were on offer and the Copaxone was not working, he didn't have any input... although believe me, we rather "passionately" discussed it over the phone.  In hindsight I am glad I waited for Ryan to hold my hand... I would have been a sniffling mess without him.  We do all of my MS stuff together.  He is my hero, voice of reason and my rock.

So what happened?  Well once we made it into the Ivy Suite, we had some paper work to fill out.  Ryan filled out all the lines I missed due to distraction.  I was given a wristband since I was being admitted for the afternoon.  I felt a bit at ends... I wasn't sick, yet I was being admitted. Given the short notice I was slotted into a time not reserved for MS patients.  Instead I was with people getting chemo.  That certainly helped to put my plight well into perspective.

Finally after sitting around for an hour, we were ushered into the ward.  I got to sit on a very comfortable chair, quite reminiscent of a dentist's chair, except much cosier and without the horror of an approaching drill!  My nurse was a lovely young blonde woman, she checked my knowledge about what was happening and I felt like I was in good hands.

Finally the time came to put in the cannula.  I got my arm out ready, no problems, as I've had a million blood tests, given blood, had babies and been jabbed with vaccinations, not to mention injected myself daily for 18 months (or about 547 times).  When my lovely nurse reached for my hand I was a bit confused, but not concerned.  Apparently they like to put the cannula in your hand because it reduces the risk of pain and damage caused my movement at the elbow.

After a hot pack was allowed to do its work on my hand.  My lovely nurse started with the cannula.  She very gently held my hand.  I looked away because I really didn't need to see her sticking me with a big pointy thing!  After about 5 minutes though, with a little bit of stinging I looked over and asked what was happening.  Apparently the veins in my hand had disappeared in fright!!  They had collapsed.  She tried another vein to no avail.

Another lovely nurse was enlisted.  On her first attempt, all looked good.  They pumped in some saline and asked if I was in any pain, because if they weren't in the vein and pumped in saline I would feel it.  I questioned them about the pain, as I have quite a high pain threshold and thought well what if the pain I could be feeling I just brushed aside as a stinging sensation that I didn't need to be concerned about.  A shaky consensus decided that the cannula was in the vein and nurse number two wandered off.  Nurse number one turned up the saline drip and pressed on my vein and then suddenly I knew what type of pain they were talking about.  Attempt 3 failed.

Nurse number one left and nurse number two returned.  Note no more "lovely", they were still very lovely, but my anxiety had risen and I was no longer really feeling the loveliness.  This time she tried my other hand... still no go.  The veins in my hand refused to play.  Was I sending them an unconscious signal to be difficult?  I'd never had any problems with drips before... and when those were done while having my babies, the nurses took much, much less care.


After a break a completely new nurse arrived.  She was Scottish, chirpy and "lovely".  She decided against using my hands, instead going half way between my wrist and elbow crease.  My nerves had begun to get the better of me... so I was expecting some pain.  She asked me to hold my arm up above my head for a minute or so and then bam the cannula was in!  No problems at all.  Thank god is all I could say... I had started to have visions of them saying, come back tomorrow or you can't have Tysabri at all because we can't get a vein.

The rest is very uneventful.  They started the Tysabri infusion and I felt.... nothing!  I sat for 2 hours laughing with my husband watching Bad Teacher on our iPad.  I had a couple of toilet stops because I had drunk a litre and a half of water in an attempt to hydrate my veins open.

When we got home, I felt tired after the experience.  Yet I felt well enough, so we went out for dinner with the kids anyway.

Over the following week, I noticed that I felt incredibly fatigued (along with some major bruising on my hands).  I am not sure if the fatigue was the work of the Tysabri or all the late nights I was having and allowing myself to be tired after a week of my husband being away.  It didn't really feel like normal tiredness, but time will tell, as there is only two more weeks until my next infusion.

So how do I feel about having this major medication infused into my body?  Well mentally pretty good considering it has killed people.  Right now physically I feel well as well.  I feel good about the fact I no longer have to inject Mr C every day, not that I had a problem with injecting myself.  I feel really great that I am on a medication that other MS-er's on a Facebook page (I Hate Multiple Sclerosis) didn't note any horrible side effect in relation to my inquiring post and that nearly all of them said they had no new lesions, some of them for years.  Which means no disease progression - hooray!  Do I dare to dream?  Soon I hope.

Monday, July 16, 2012

D.Day Tysabri Infusion.

Last Wednesday I had an appointment with my neuro.  This was as a follow-up to my yearly MRI.  As I am highly impatient about these things... a week after my MRI, I went and collected my notes regarding what the MRI found.  The comment at the end was, "Several new lesions, at least five, have developed in the hemispheric white matter."  Now I have to tell you, this is the most new lesions my brain has developed since the beginning of being MRI-ed!  I turned to my husband in the car after reading this and asked, is it unrealistic to think I could have no new lesions in a year... considering I do actually have MS?

About a month before my MRI, my parents were over for dinner and as they were going off on an extended escape from winter in Perth.  We had a chat about my upcoming MRI and I remember saying, I think my medication will change.  I hadn't really thought about it until that moment.  But I guess subconsciously, I had been.  This was about two months prior to my neuro appointment.

My neuro said well, your current medication isn't working, you need a new treatment..  Good old, Mr C... I bet he thought it was a big joke every day when I injected myself and he floated around my system being completely useless.  My neuro didn't really give me a choice of medication, but he metioned Gilenya, but said it's newer, you have to remember to take it every day, it's pretty immunosuppresant, has some big side effects (lowers heart rate and increases blood pressure among others), has lots of little side effects and because it's new and they don't know the long term effects.  So Tysabri it is... it has the best results of all the drugs for MS currently.  I think my neuro likes to play it safe with me, as my MS is reasonably mild, he won't put me on more experimental, newer drugs, where risk could outweight benefit.  One side effect of Tysabri he mentioned to me was increased UTI's in women.  I thought, oh great, fab, just what I need.  He went on to say that they did research on this and found that because the women on Tysabri were feeling better they were having more sex and were getting more UTIs as a result... not due directly to the Tysabri!  So then I really did think, oh great!

Looking back... while I never actually thought about the reasons why I thought I would be changing medication.  I had noticed more tingling in different spots and it was just hanging around... more noticeable I guess. Lhermitte’s is a daily occurrence on waking for me now.  Sometimes I am very fatigued, heat totally knocks me for six and my brain doesn't work as quickly or cleverly as it used too.  I try my hardest to be calm about these things and not think about them too much, because it freaks me out and you know what... there isn't much I can do to stop it from happening.  So it's kind of a waste to worry... to get all worked up and not be able to do anything about it.  Well... there is stuff I can do and I do those things already, like diet, medication and lifestyle.  Well I am kinda failing on lifestyle right now because I am writing my thesis and it causes me all manner of stress and worry.  But I do try and combat that with exercise, yoga and relaxation.

So anyways today is the day for my first infusion at the hospital with Tysabri (or Natalizumab).  I feel like I am making a good and informed decision.  The medication is the best that is out there currently and I am JCV (John Cunningham Virus) negative.  I feel a little worried about allergic reactions...  I am not a very allergic person, so surely this is weighing in my favour.  But I think it is natural to feel worried and most normal people would be feeling concerned about starting a new, major medication which has caused severe permanent disability and death in people with the JC virus which has mutated into PML (Progressive multifocal leukoencephalopathy). 

PML is caused by the JC virus, which is normally present in many people; it's not an unusual virus at all and causes no symptoms.  It is kept under control by the immune system. Immunosuppressive drugs prevent the immune system from controlling the virus... and Tysabri is one of these drugs which specifically can let PML develop.  I, luckily do not have the JC virus in my system.  However lots of people with the JC virus choose to take Tysabri, because the benefits outweigh the risks.  The risks become greater if you have previously taken other immunosuppressive drugs, which is not me.  The latest research indicates my risk of developing PML without having the JCV and no previous use of Immunosuppressive drugs is < 1 in 111, 111.  I think that means I have more chance of having a car accident (1 in 600) or developing breast cancer (1 in 7) or committing suicide (1 in 100) than getting PML.

There are other side effects, like liver issues which I will be monitored for via regular blood tests. I am pretty sure I read that liver issues which develop due to Tysabri are reversible once Tysabri is stopped.  There is also joint pain, headaches and fatigue.  It is also reported on the internet that it can increase susceptibility to infections.  But my neuro says this is not the case... Tysabri makes you susceptible to a small specific group of rare illnesses.  But I guess I won't know what effect Tysabri will have on me until it's in my system.  I have two friends who's treatment is Tysabri and they love it.  So that gives me hope. 

Well I have to go now, because I have to change to go off to the hospital.  Sorry for any spelling errors or grammar problems, but I can't re-read right now as I am out of time.  Any of you who know me, know I like to add in things, like write a post when I have a spare moment so as not to waste any time... but in actual fact I don't really have the time to do anything.  Wish me luck.  I'll let you know how I go. xx

Ps, If you are on Tysabri, please leave me a comment with your feelings about it.  Ta.

Thursday, June 21, 2012

Much Requested Kedgeree Recipe

So it seems a bit like I am writing a cookbook right now, right?  But I promise I'm not... not yet anyways!!! 

Not too long ago, I was at a family get together which are sadly occurring less frequently these days,  where we all brought dishes of food to eat.  I brought along my version - the lower saturated fat version, of Kedgeree.  A friend first cooked it for me and I requested the recipe from her... so it's only fitting I pass it on to those who have requested it from me.  And I'm no sneaky sausage... I haven't left out any ingredients so that my version is always the best... yours will taste just as yummy as mine I promise.

Original Ingredients

2 eggs
680g smoked haddock fillets, any bones removed
2 bay leaves
170g long grain or basmati rice
salt and freshly ground black pepper
115g butter
1 medium onion (or equivalent spring onions) finely chopped
1 clove of garlic finely chopped
2 heaped teaspoons of curry powder
2 lemons
2 handfuls of chopped fresh coriander

My Modified Lower Saturated Fat Ingredients

4 eggs - yolks to be removed and fed to your youngest child!
680g orange smoked cod fillets, any bones removed
2 bay leaves
170g long grain rice - cheaper than basmati
Macrobiotic salt (salt which is in it's natural unprocessed state) and freshly ground black pepper
115g of olive oil - not extra virgin as it's unsuitable to heat, experiement with the amount, as you could probably use less - much less, but not none!
1 medium onion finely chopped
5 cloves of garlic pressed through the garlic press - bugger chopping it!! I love garlic btw!
2 heaped teaspoons of curry powder
2 big lemons
3 handfuls of chopped fresh coriander - I love coriander as well!

Method

Boil the eggs for 10 minutes. Allow to cool while preparing the rest of the ingredients.

Put the smoked cod in a frying pan with some water and the bay leaves and bring to the boil.  Cover and simmer for about 5 minutes until fish is all cooked.  Remove from the pan and when the fish is cool enough to handle, remove the skin and flake the fish into chunks, then set aside.

Cook the rice in salted water for about 10 minutes then drain.  Refresh it in cold water, drain again and put it in the fridge until you need it.

Warm the oil in a pan over low heat and add the onion and garlic.  Allow it to soften, but not colour for 5 minutes.  Add the curry powder and cook for a couple of minutes.  Add the juice of one lemon. 

Cut the eggs into wedges.  If you are concerned about your saturated fat intake, remove the yolks and feed them to your kids, dogs, husband etc or dispose of in the bin... if not proceed with eggs wedges intact!!

Add the fish and rice to the pan and gently heat through, then add the eggs and coriander stiring gently as not to break up the eggs any further.

Put into a warm serving dish and serve with the second lemon, which you have considerately cut into wedges.  Serves 6 (or 4 with the option of seconds!!)  Enjoy.

It's such a tasty dish... you won't mind all the dishes it creates because there are A LOT... maybe schedule someone else to do the washing up duties!

Good luck with it. xx

Wednesday, June 20, 2012

My Wellness Presentation, Apple, Blueberry & Walnut Bread

So about a week ago now I had my first ever Juice Plus Wellness Presentation, a friend of mine, De and I have kinda, sorta gone into business together.  As she is the charismatic speaker, she did the nutrition presentation and she did a wonderful job, even if I do say so myself.  I am biased, because I love her to bits - she's passionate, energetic and relentless about her nutrition, fitness and health and that of her family and so, in this way (and several others) we are like minded.

Anyways moving along... I made a cake, from a recipe that I cut out of a magazine and put in my recipe book thinking... hmmm it's quite healthy, but how do I make it into a cake that I could eat, with low saturated fat - ie no eggs and dairy?

My low saturated fat version was a resounding success because everyone loved it, including my six year old daughter!  I experiemented with putting in my left over wet almond meal in it as well, because I really hate throwing all that lovely almond goodness in the bin or feeding it to my (ok, yes - deserving) chooks.  I'm not 100% about exact measurements of what I added, but I will give it my best shot ok...

Here is the orginal ingredients list

2 cups of plain flour
2 tsp baking powder
2 tsp cinnamon
1 cup caster sugar
1 punnet fresh blueberries, or 3/4 cup frozen blueberries
2 peeled, cored and grated green apples
3/4 cup toasted chopped walnuts
125g melted butter
2 lightly beaten eggs
1/4 cup milk
1 tsp vanilla extract
2 tsp demerara sugar

Here is my ingredients list

1 cup plain flour
1 cup wholemeal plain flour
2 tsp baking powder
2 tsp cinnamon
1/2 cup raw sugar (could even use less, I will next time)
About 3/4 cup frozen blueberries
2 peeled, cored and grated red apples ('cause thats all I had)
3/4 cup broken up raw walnuts (I didn't have time to activate or chop them)
125g olive oil (not extra virgin as its not suitable to heat)
1/4 cup home made almond milk
1 tsp natural vanilla extract (you could use vanilla beans paste)
All the almond meal left from one cup of almonds after making almond milk (make sure there is not a drop of moisture left in the meal)
2 tsp raw sugar

AND for my egg replacement I did this with vinegar, water and baking powder:

Mix one tablespoon each of white vinegar and water in a glass.  To this add one teaspoon of baking powder and stir well until the mixture blends and finishes fizzing. Then just replace the eggs with it!  This can be used when you need to replace more than one egg in your cake recipes... apparently.

Check out this egg replacement page... http://chefinyou.com/egg-substitutes-cooking/  -  it's handy!

Method with my Ingredients  

Preheat oven to 180 degrees celsius (356 fahrenheit).
Light grease (I use canola spray oil) loaf tin (about 10 x 20cm) and line the base with baking paper.

Mix flours, baking powder and cinnamon in a large bowl together.  Add sugar, blueberries, apples, walnuts and almond meal.  Remember to reserve some walnuts for the top of your cake.

In a jug mix together the oil, milk and vanilla.  Gently fold into flour mixture until combined.
Add in your egg replacement and gently fold again until well combined.

Tip mixture into the loaf pan.  Top with reserved walnuts and sprinkle on the 2 teaspoons of raw sugar, although if you wanted you could skip the sugar on top.

Bake for 1 hour and 5 minutes - after this time keep checking every 5 minutes until your skewer comes out clean (I can't remember exactly how long it took with the addition of the wet almond meal).

Cool in the pan for 5 minutes before turning out onto a wire rack to cool.  The recipe says cool completely before scoffing, but it was delicious when still warm.

I didn't heat the cake on the evening of the wellness presentation, but again the recipe says that the cake is delicious toasted with your favourite topping.

I'm no chef... but I am not scared to experiment in the kitchen as, for me partaking in a low saturated fat lifestyle there just isn't that many recipes around...  What's the worst that could happen?  Your kids hate it - so you get the whole lot to yourself or worse still, it's completely unedible and you chuck it in the bin and start again!!!   Personally I have never had this happen!  Do some research about your experiements - google is your friend and teacher and use your comon sense.

I have halved the sugar in this recipe and gone for the least processed sugar I had available.  You can pretty much half the sugars in all your cake recipes without a problem - at least I have never had any problems.  You could use unprocessed honey, maple syrup or any other NATURAL sweetner in its least processed form.  DO NOT let me hear that you have used an insecticide artifical sweetner - unless of course you want to die a slow and painful death.  No joke - look it up. 

I don't mind using a little sugar in my recipes, because I have made the cake or whatever myself and thus I know what I have put in it.  There are no mysterous numbers that we are supposed to believe are food.  I am making a huge shift away from processed food - they are killing us and making our kids sick and miserable.

Ok off my soap box and good luck with your yummy cake and cake experiments.  xx

Thursday, June 7, 2012

Health Information Online, Participants Needed

Are you a reader from Western Australia?  Do you have teenagers aged 13-17?  Do they look for health information online?  Yes, yes and yes?  Oh my God.... please read below.  I need your HELP!

Hi friends. As you may know I am currently involved in research as part of my Honours degree at Edith Cowan University. As an enthusiastic seeker of health information online, I have decided to explore the experiences of adolescents aged 13-17 years old, living in WA, who have sought health information online. Through examining where Western Australian adolescents are seeking health information on the Internet, by means of which devices and understanding what their experiences are of using the Internet for health information, this study will deliver information to health services to provide targeted health messages and improved delivery methods for health messages to adolescents living in WA. Participants are being recruited through this blog post, after which I will send you, the parent or guardian an information sheet and consent forms. If you allow your son or daughter to participate in the interview and answer questions about their online health information experiences, they will be asked to sign a consent form and participate in one to three, one on one Skype or in person interviews with myself lasting between 20-45 minutes in duration. Your adolescent’s participation is voluntary and if they choose to participate, they will be free to withdraw or not answer questions as they see fit. This research has been approved by ECU’S School of Psychology and Social Science Ethics Subcommittee. Once the study is completed the data will be stored securely at ECU and will not have any identifying information about your child. If you have any queries about this research project, are interested in finding out more or would like your adolescent to participate please do not hesitate to contact me by leaving a comment with an email address I can contact you on and I will send you a thorough information sheet about my research. Thanks for your time.

 If your teen fits this profile, please leave me a comment with an email address, which I will NOT publish.  And I will send you an information pack, complete with consent forms.  

I have to put it out there that I will be in no way counselling your teen... and I am not interested in the "why" behind why they have looked at the information online, but rather of their experiences of looking for health information on the internet.  This can have occurred at school or at home for personal reasons or for school.  I have a current Working With Children Check.

If you have any question feel free to leave a comment and email addy and I will answer asap.

Thanks.

Lee-Anne

PS, If you know of anyone who might be interested in taking part who lives in Western Australia, please refer them to this post.  Ta.



Wednesday, May 30, 2012

May Post

Well I thought I'd better get a post in for May.  Who would have thunk assignments and take home exams would take up all of my brain space... well I did, I think I was just in a state of denial.  I love to blog, but it is a hard thing to do when you have already been writing all day.  Academic writing also seems to suck the creativity right out of me - slurp!

But it seems to be worth the creativity been sucked out of me, as for my last assignment about suicide I received 80%.  Yay me!

Right now I am in the participant collecting stage of my honours research.  It is quite an anxiety inducing period.  What if I don't get any participants... what if I only get a couple of participants... what if I get participants who said they had looked for health information online, but haven't really.... what if my participants don't want to talk to me during the interviews!!  Well, those things haven'y happened so I will let them go.

I read about a girl who was diagnosed with MS at aged 12 today - World MS Day!  It made me sad and angry, but also inspired as she was just getting on with her life.  I think us older MSers struggle to come to terms with what having MS means more than younger people, who just seem to move on from diagnosis after the inital greiving period.  Anyways... I have no scientific proof about what I just wrote, but here is the link to the story.  http://www.mamamia.com.au/social/multiple-sclerosis-day-a-brave-and-heartwarming-story-from-an-incredible-woman/ 

Bye for now.

Tuesday, April 24, 2012

Back to Sleep Alter Ego - Run Run!!

I'm still here.  Just busy with uni assignments is all!

So I am really proud of myself today... yes, even at this particularly early hour!

My alter ego woke me up at 5am telling me that I was not at all motivated to get up and run and that it was toooo cold and that my ankles hurt tooooo much and that I was sooooo tired and that my circuit was toooooo long!  

My alter is getting too much air play these days I must admit.  Kinda cheeky that she woke me up so early don't you think?  Tends to happen when I have a lot on my plate.

But I dragged myself out of bed at 5.40 and ran for 32 minutes including one small hill and really enjoyed it, because it was cold, dark, quiet and my ankles didn't hurt! 

So take that alter ego.  Be banished back into the deep dark depths of my mind, far away from my conscious thought.

How does that work then, telling yourself you can't do it and then you do? 

So what I think is don't listen to the bullshit excuses you tell yourself and just get out and do that thing that you tell yourself you can't do! Because you will surprise yourself - without a doubt!

Saturday, March 31, 2012

My Mini Meltdown

So it's the end of March and I haven't blogged for over a month... I better get on it then.  I must add that although I'm not posting, I am thinking about it all the time.  Like the last time I posted I have been very, ridiculously busy at uni. 

Last weekend I had a mini meltdown.  My husband woke up on Saturday morning and suggested to my daughter who had just woken up and jumped in bed with us that we would go to Cottesloe Beach and see the Sculptures By The Sea.  I had been suggesting this as an expedition for a month, so at first I was like, yeeeeeeeeeeahhhhhhh!!!  But then the reality dawned on me that I had a million assignments all baring down on me and I cracked.  I ended up going to the beach, but it wasn't without tears and wailing, because I really wanted to be with my kids when they saw the sculptures for the first time, yet I had shitloads of reading to do.  At my husbands prompting I comprimised and took some reading to do on the train.  It wasn't ideal, but at least I got to do both.  I wasn't even paticularly disappointed when we figured out the reason there were no sculptures by the sea, was that the exhibition finished the week earlier.


The result of my mini meltdown was that I went and discussed my predictament with my lovely supervisors (entirely sincere "lovely" there!)  I am not 100% sure what made me think I could complete 3 units at uni, be a fulltime mum and wife, play house and look after myself... might have something to do with the encouraging words of the fourth year coordinator at the time of enrolment.  But anyways... all those balls in the air... I could see the hole I was about to fall into, I've fallen into it before with study, so I had a pretty good idea that if I kept on going the way I was, I was bound to fall in.  My supervisors both said to me, family comes first - drop some units.  So, academics are telling me to drop units, put my family first and look after myself - should I do it... yes!  And that is what I did.  So I am feeling a little more under control and just a little bit in two minds about sitting here writing a post rather than reading for an assignment.   

I have just submitted my research proposal and have decided that I will post the abstract from it for you all to read.  The abstract is technical way of saying summary!  This is what I have been working on for the last few months.  There is a program that the markers may run my proposal through, called Turnitin and if they were to do this my work would come up plagiarised - but at least will be copied from me!  Here it is:


In 2011, 95 % of Australian 15-17 year olds accessed the Internet in the previous 12 months (ABS, 2011).  Adolescents utilise the Internet for education, recreation and interaction, however they also utilise the Internet to obtain health information (Thurlow & McKay, 2003).  The objectives of this research is to ascertain where online Western Australian adolescents are seeking health information, by means of which devices and what their experiences are of using the Internet for health information.  A phenomenological qualitative design will be employed within a narrative framework so as to gain an in-depth understanding of the experiences of adolescents who have sought health information online.  It is proposed 15-20, 13-17 year olds will be required to participate in oral interviews via online (Skype) video calls, which will be recorded and transcribed. The transcripts will be reviewed and analysed from within an ontological social constructionist perspective. The research will generate understanding of how the delivery of online health messages can be better targeted at adolescents. 

Ta Da.  There you have it.  What did you think?  This is what my year will consist of... researching the online health habits of teenagers.  Hooray!!

Til next time... stay safe.

Tuesday, February 28, 2012

I'm Not Lazy Just Overwhelmed!

So uni started for me last night and this morning.  I am doing two units, Health and Clinical Psychology and Advanced Developmental and Professional Issues in Psychology.  Both sound pretty good to me - more practical than other units I have done thus far.  I am starting to think, after 4 years, the powers that be at uni think I am serious about becoming a psychologist (finally)!

But I can tell you this for nothing... I am shitting myself!!!!  Two units, with all their reading, assignments, group work, exams and in class talks is freaking me out - not to mention my impending thesis.  I have never done so much academic work and run a family before... plus exercise and watering my garden.  Oh what about writing my blog?  I'm not lazy about posting, just overwhelmed!

One big, massive, ginormous weight off my shoulders is that I have just about finished my research proposal for my thesis that I will be completing this year.  So I can nearly finish having a coronary about it.  I am quite proud of myself, because only a a couple of months ago, having received an example of a proposal from my supervisors, I thought I was way, way in over my head and about to drown.  However at a plodding pace, I have written it, written it well AND now it is nearly done.  Yay me!

It is normal for me to feel completely overwhelmed and ridiculously stupid at the beginning of semester.  I know this, because I have been there before many times.  I know this and am making allowances for it this time, ie I am trying not to beat myself up so much.  I feel stupid because I haven't learnt the new information yet and I feel overwhelmed because I haven't done the work yet.  I just have to get organised - super organised.

You know what, I can't give up running my family (and home), not that I do it alone.  I was surprised when last night and this morning I missed doing the things with my family that I normally would at those times.  Maybe surprising is the wrong word, but it was nice to feel that way - all sentimental and stuff. 

I would give up housework if I could afford a cleaner, but wouldn't we all?  And how about a personal chef?!  Four short words for ya... 1. Buy 2. a  3. lotto 4. ticket!

I can't give up exercise at the moment either, especially since I have just recently taken up some strenuous exercise.  I am planning on doing the "Step Up for MS" event on April 29th.  It is a climb of 1096 stairs, up Perth's largest building - Central Park.  Yes I am crazy.  My hubby inspired me last year when he completed it in about 11 minutes with no training.  This is the website http://www.stepupforms.org.au/event-information.html#  If you live in Perth, maybe you might like to join me.  The more the merrier!

I can't give up watering my plants or they will die and I'll have nothing pretty and green to look at during Western Australia's long hot summer. Obviously!!!

You know what I can't give up living a normal life, so study will just have to fit in with my life.  After I get back from picking up my daughter from school I am going to write a plan for the next 3 months.  It's only three months of being super dooper organised, then I can go back to my relaxed version of organised. 

Or not, because then my thesis will be due! 

As a very clever friend once advised me, baby steps.  And if baby steps is what it takes to keep me sane for the next 3 months then baby steps it is.

Saturday, February 11, 2012

Great post

Check out this post by Travis White, "Everybody's Got Something".

http://blog.nationalmssociety.org/2012/02/everybodys-got-something.html

Make of it what you will - everybody's got something... a disease, financial problems, a big public speech to deliver, I dunno - criminal issues, lost someone they love... grieve and deal with your issues for sure, but to quote Travis, "you’re not a special case. Just get on with it.” 

In my book, you really don't have a choice, face your problems and live or hide and die a slow painful death of self-denial, guilt, self-loathing and probably add a good serving of anxiety and depression on top of that too.  Move forward - onwards and upwards.

The best reward is to realise this... Thanks for the quote again Travis, "We all have problems to face but we all have something positive to contribute as well". Perhaps it is as simple as living your life how you want to live it.  Perhaps it is winning a Noble Peace prize.  Perhaps it is raising lovely children.  It could be anything that means you aren't standing still concentrating on your issue or problem.  

Don't let "it" paralyse you.

Good luck my friends.

Thursday, February 2, 2012

Ode to Breastfeeding

I was once told, by a man I must point out, that I have boobs that a lesbian would like... hmmm go figure - what type of boobs does a lesbian like? (Probably not gonna live that one down am I?)  Well I would have never, in my wildest dreams, even considered telling the whole world that in my very private pre-breastfeeding days, but after a grand total of 53 months breastfeeding two children I feel a whole lot more comfortable with my boobs and talking about them.  Not that I plan on talking about them now per say, but rather of my experience in using them to breastfeed - in my own ode to breastfeeding if you like!

Looking back I was probably one of the least likely people to breastfeed babies if it went on how comfortable I was with talking about my girlie bits.  Yes those things are attached to my chest but it didn't mean I wanted to talk about them or have a baby latched onto one because that might mean I had to get it out in public.

I'm not sure what swayed me to breastfeed... I guess ultimately it was falling pregnant that changed my mind.  Surely what came out of my body would be better for my future bub than what came out of a tin - no matter how scientifically it was put together.  Not to mention much cheaper and a hell of a lot more convenient - at the very least I wouldn't have to get up in the middle of the night, flail around in the darkness trying to make a bottle of correct temperature formula and then later, much later try and fall back asleep. 

I definitely read something put out by The World Health Organisation, that said, breastfeeding for the first two years of life was the best start for baby.  A random blow-in clinic nurse later pointed out this may have applied more to third world mothers. However, I had already decided that this would be my aim - two years of breastfeeding.  Given what I've already written you would think this was a highly ambitious plan wouldn't you?  A big ask for someone who originally didn't think getting her boobs out in public, even with a real purpose was for her in any shape or form!

So my first teeny weeny baby was extracted from my belly 15 days overdue.  It was kind of weird trying to get her to latch onto my boob - blind leading the blind really.  I was super tired after the C-section and then the nurse put the baby in the bed with me and I didn't get a wink of sleep at all.  Was this what the next 18 years was going to be like? 

I remember while I was in the hospital, I was about to start breastfeeding when my lovely (I mean that sincerely) father-in-law walked in.  He kinda just stood there... maybe he thought I was like every other breastfeeding mum, who was used to getting their boobies out in front of anyone... but so early in the peace, I just couldn't get the girls out in front of my husband's father.  It just wasn't right!!

My little Chynna doll was trouble, trouble, trouble on the breastfeeding front.  You would think that for something that needed breastmilk to survive that she would figure out pretty quickly what she needed to do to get the milk.  But no, not my little Chynna.  She squawked and screamed and moaned and fidgeted and woke up like a thousand times during the night.  Being first time parents, my husband, Ryan and I assumed she wasn't getting enough milk and so the breastfeeding saga commenced.  You might ask if I thought about bottle feeding my little darling and the answer is yes.  We tried so hard, but she simply refused to take the bottle, no matter which teat or bottle shape we used or who fed her.  She was hell bent on breastfeeding while lamenting it at the same time!

I remember going to the Breastfeeding Centre at King Edward Hospital with my sister.  She was my moral support for getting out of the house with a screaming baby in tow.  The appointment was going well and the nice lactation consultant lady was answering all my questions, then she said how about we check your supply.  She hooked me up to a heavy duty electric pump with TWO PUMPS - oh the indignity of it all!  Luckily by this time I had no shame in getting my boobs out, although I am not sure how my dear sister kept a straight face... maybe she knew I would burst into tears if even a smirk threatened to make an appearance on her face.  Milk supply - excellent!

Luckily at the time I also had an A-M-A-Z-I-N-G clinic health nurse (Michelle).  We had a really nice connection and I appreciated what she had to say about babies and life.  She never made me feel like a nitwit, as per many horror stories I have heard from friends about their clinic nurses.  I remember at one appointment asking, what happens when my boobs run out of milk and the baby is still hungry?  She calmly informed me that the humble breast makes milk instantaneously as required, in fact she explained the whole mechanism i.e. a nifty hormone called Prolactin causes your alveoli to take nutrients from your blood supply and turn them into breast milk!  So I never feared that my munchkin wasn't getting enough milk ever again.  She was just a whingey, fussy baby - who loved the sound of her own racket, that and in hindsight, she may have been suffering silent reflux for the first six months of her life.  

My daughter and I finally managed to get it together and work more as a team after an incredibly trying first six months.  I actually started to look forward to night feeds, because it was quiet and I had no pressure to do anything else, like washing anything.  I could just cradle my beautiful baby girl, watch her gorgeous face and enjoy her snuggly warmth (unless it was the middle of summer of course!).

As the two year mark approached, I started to feel quite apprehensive about giving up breastfeeding.  I had worked myself down to one feed during the last year, but I wasn't sure how I was going to go or more importantly, how Chynna was going to go with no boobie to settle her at night.  Of course, she was fine and never looked back.  While I was a little sad, I knew I would breastfeed again.  I was also really glad to get my boobs back to myself and the cessation of a feed before bedtime was a big plus because it certainly made that whole routine shorter.  I could put my feet up sooner.

A few years later my bouncing baby boy was extracted from my belly.  From the get-go he was a joy - placid, relaxed and easy to feed.  For his first feed, I lifted him to my breast and forgot he was a newborn and not a two year old.  The nurse gently reminded me about helping him latch on, but he did a pretty good job by himself.  I got the  hang of it again pretty quickly.  In the hospital all types of different feeding positions were suggested, yet as before none of them felt comfortable to me.  I had a single feeding position in my repertoire and that was the cradle hold.

Big problems began just days after Mr Sabin came home.  He began writhing about in what appeared to be pain, he had an inconsolable cry and worst of all, started vomiting after just about every feed.  Not little spit ups either - the entire contents of his stomach would often make an appearance all over me.  Luckily it was just milk, but it was warm, gooey and sometimes smelly - so it was highly unpleasant and extremely anxiety inducing.  He is the only person who has ever thrown up in my hair - because not even I have done that.

So began the search for what was wrong with my newest edition.  I googled the problem and came up with reflux.  Everyone I suggested this to, had a reason why it was not reflux.  I thought I was going out of my brain - I no longer had my original clinic nurse and my relationship with my current nurse was a work in progress.  She came to my house and watched me feed Sabin, suggesting he was a piggie or that I had too much milk and that I should phone the Breastfeeding Centre at King Edward Hospital.  I did this and they again refuted my claims of reflux and recommended a different feeding position - keeping Sabin more upright and me more reclined to slow the flow of milk.  It was awkward to say the least and did nothing to fix my problem.

I did learn, however that if a lactating mother has a diet too low in fat, her baby will not get enough nutrition from her milk.  This set off alarm bells in my head.  When I was feeding my baby girl, I was on my super low saturated fat MS diet.  Maybe she was just continually hungry (and suffering from silent reflux).  Hindsight is always twenty twenty!  Luckily at this time, that diet was on hold and had been for some time.

Eventually I got an appointment with the paediatrician, who had seen Sabin while we were in hospital.  I made sure I had a list of all reflux symptoms and all of Sabin's symptoms so I could argue my case as I expected to be rebuffed.  He looked at me about to read my list and said I can tell you the symptoms of reflux because I have been treating it for twenty years, does your baby have this and he reeled off a list of symptoms.  I felt so relieved that he had heard me when so many people hadn't because Sabin didn't do something associated with reflux or did something which meant he couldn't possibly have reflux.  Anti-climatically what this all meant was that Sabin started Losec medication and kept breastfeeding.  He continued to chuck his guts up on me for the next six months usually at the most inopportune time - like when I was all made up ready to hit the town, or getting Chynna ready for school in the morning or when a friend was holding him - ugly is all I can say!  But he was no longer in pain.

We continued to feed during the night until about the third or fourth month when Sabin just stopped waking up.  I also learned that he often wriggled in his bassinet from around 4.30am, but this did not mean he was hungry.  Eventually we could no longer deal with all the snuffling and little kitten noises, so we moved him into his own room. 

Before I knew it Sabin and I were down to one feed before bed.  I think if he had of been the one to select which feed he kept between the morning and the night feed, he would have picked the morning.  He just seemed to feed best in the morning, probably due to hunger, but his concentration span was also longer.  I often found at night he would just have one side and then hurry off to see what his sister was doing, leaving me a bit lop-sided.  I could have probably said good bye to feeding at this time... but I wasn't ready.

As it started to approach Sabin's second birthday, I started to think more about “quitting”.  My husband was very keen for me to give it away.  But I wasn't mentally up for the challenge.  Stopping breastfeeding meant that Sabin was no longer my baby, but my growing toddler.  And as Sabin was likely my last baby it also meant arrivederci breastfeeding for good.  A chapter of my reproductive life - one where my body felt like it was doing what it was meant to be doing was coming to an end.

It took a good two and a half months of telling Sabin we were going to stop breastfeeding before it occurred.  I told myself many times, that this is it - this is the last feed, but the following night I did it again.  In the end my husband helped me along by putting Sabin to bed one night before I came home from yoga.  He didn't miss me or my boobie juice and Ryan tells me that he counselled Sabin appropriately.  So the next night he went without and it just went from there.  There were no fireworks on that last night - or anything that made it memorable.  I think in some small way I was looking for a perfect end to my breastfeeding era, but perfect is just that - perfect and unattainable.

So there you go - my ode to breastfeeding.  I am very lucky I had such polite feeders - who didn't bite me - thanks my little darlings.  

Lastly I want to add that I totally respect that many mothers choose formula over breast for lots of reasons.  I could have easily been that mum myself.  I am glad I didn't give up in those first six months - they were daunting and scary times, but the rewards for me in the end were far greater in so many millions of ways than those fleeting emotional states.  If you are starting out on your breastfeeding journey, good luck and enjoy!



PS Sorry regulars (if I have any - how presumptuous of me) I have been writing my research proposal in my spare moments and have not dedicated much time to my blog... apologies I will try harder to do both. 

Monday, January 9, 2012

MS Cognitive Issues and News Years Resolutions

During last year I attended a newly diagnosed session at the MS Society of WA.  While I was not newly diagnosed (thank God and for an explanation perhaps look back at this post, http://lumpycustard101.blogspot.com/2011/02/newly-diagnosed-seminar.html) I was new to medication.  Being the most conscientious note taking nerd that I know - I took notes and made sure to highlight the fact that the MSWA Occupational Therapy Department did cognitive testing.  At the time and still to this day, my brain does not function the way it used to pre-MS.  These cognitive issues are also post-babies, as I don't really remember having the cognitive slip-ups I do now back then pre-babies, which was about three year post MS diagnosis. Conundrum?  Nope, not in my sometimes sketchy mind.  MS equals cognitive dysfunction, especially since I've been getting regular uninterrupted sleep for a year and a half now and those pesky cognitive problems have not disappeared!

Hearing this piece of information about the Occupational Therapy Department piqued my interested.  I was very keen to have some testing done just to prove to myself that I wasn't a complete imbecile (or suffering early onset Alzeheimers) since I was forgetting the simplest of and frequently used words, like, "Can you get the knives and thingos and set the table."  Or the next day forgetting half of the movie I had just seen the night before, or perhaps not so easily following a convoluted movie plot.  Or worse still, forgetting details of growing up that I previously prided myself on remembering and recalling.  I told myself to remember this info because I couldn't use the service immediately as I was about to commence my most feared, fourth year statistics unit at university.  I didn't dare undermine my confidence in my brain's ability anymore than was absolutley necessary.

Lets just clear up what cognition actually is shall we.  “Cognition” refers to the mind’s ability to recognize, organize, store, and recall information.  MS can impede the parts of the brain whose job it is to perform these tasks.  Everyone naturally has different abilities or strengths and weaknesses in cognition, but changes in cognition, however mild, occur in 45 to 60 percent of people with MS.  I have read estimates as high as 70 percent and occuring in up to 50 percent of recently diagnosed cases.  However only 10 percent of people with MS can expect severe cognitive impairment.  Most MS cognitive impairment is not progressive, so while it may feel like we MSers are losing our minds (like stacks of other people minus the MS) we are not and the impairment is usually limited to certain types of cognitive problems like a reduction in mental sharpness, multitasking, processing speed, problems solving and word finding etc.  Currently there is no medication to assist specifically with cognitive impairment in MS, although there are some in the early research stages.

Do those statistics make me feel any better - knowing that so many of us with MS will suffer the same types of cognitive issues?  Does it help knowing when I am out with a group of friends and I am doing the talking, but can't remember a word or punch line instantaneously that up to 70 percent of my fellow MSers may be in the same situation?  Nope, no siree I still feel like a twat!  And I still feel like this around my friends who know I have MS.

Anyhow when I finished that fourth year stats unit (and did stupidly well at), I called the MSWA  Occupational Therapy Department to make an appointment to have some cognitive testing done.  It was all really simple and straight forward...  certainly nothing to loose any sleep over.  The screening tool that was used was the Screening Evaluation for Cognition Impairment (SEFCI), which was designed specifically for peeps with MS.  Within it's scope, memory, thinking speed, problem solving and word knowledge were tested.  The SEFCI is a standardised test and has a high degree of accuracy in predicting the likelihood of cognitive change.

My results were all rather positive and did not suggest any significant change in my cognitive functioning as a result of MS.  As I was writing the above paragraph, I remembered what was said in a lecture about psychologocal testing (a unit I completed about a year ago) which was that I would no longer be able to be psychologically tested because I would know what to expect.  I did know what to expect and I knew the best ways to do some of the tests.  Did this affect my results?  Surely.  But I will take the tact of the manager of Occupational Therapy, which is that, yes I am noticing changes in how I process and recall information, but that these changes are subtle and do not impact on my routine.

The manager highlighted that being hyper aware of every little thing I forget is not helpful and that everyone forgets things.  During a conversation that is flowing rapidly along I wouldn't notice someone forgetting a word or two - in fact I can't recall a conversation where someone else forgot a word.  Surprise surprise, I can remember me doing it though!  She also notes that being tense and stressed can have a negative impact on cognitive functioning, ie being worried about my ability to perform in a conversation.

As I have aspirations of being a psychologist I asked the manager what my prospects would be considering I will need to keep up with a clients conversation.  It just so happened that a neuropsychologist was visiting MSWA and my results were discussed.  The neuropsychologist emphasised recent research that suggests you can help yourself by adopting good "brain health" strategies early and these may help delay MS taking hold of cognitive functioning.  There are five strategies and they are pretty generic, common sensey and are probably useful in delaying the normal aging process. Here they are:

1. Exercise: of the huffing and puffing variety that no one loves, to get extra oxygen into your brain.
2. Mental stimulation: do things that make you think - it could be work related or fun.
3. Immunotherapies (ok so perhaps not this one for delaying the aging process) continue using treatments as recommended by your neurologist.
4. Good nutrition: 5 serves of veggies and 2 serves of fruit.
5. Social supports: spend time building and nuturing relationships.  Social participation is essential!

I would add another one to this - get on top of anxiety, stress and depression as these are also issues that can potentially impact on how you perform cognitively.

So wanna know what my New Year Resolution is?  Stop being super aware of myself forgetting words, because probably no one else really cares except for me.  I will try the laugh it off method if I am with friends who know I have MS and also the MS blame game.  But if I am not with friends who know I have MS, I will employ good stress managing techniques, like breathing through anxiety or to just bluff my way through a conversation.... I guess it has worked until now.  I will try to just let these episodes go, not replay them over in my mind a trillion times and most importantly I am not going to let these minor mishaps stop me from talking.  I love talking!

My second (and last) New Years resolution is a whole lot less complicated... chewing my food!!

Thanks for reading!