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!
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
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