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