Saturday, 4 June 2011

To Ritux or not to Ritux? That is the question.

Today I started a couple of lists. In just over a week I see my Neurologist to decide the next step in the management of MS. The first list is comprised of about a trillion questions - and I know he won't have answers for all of them. For example: a) why am I sick ALL the time - is it the Ritux? b) are there any surprise lesions? c) can I try interferons? etcetera.Very soon I'll reach the six month mark since my last Rituximab infusion. I am pretty nervous about what the doctor will suggest and am scared in equal parts about taking the Ritux and not taking it. Nuts right?! It's like being stuck between a rock and a hard place. If I take it then it's more immuno-suppression and how long can you do that for without complications (don't answer that!)? And if I don't take it then I'm at risk of a relapse. It's a quandary.

 I'm acutely aware of my biological clock and knowing that we can't even think about conceiving until 12 months after my last Ritux infusion keeps me awake some nights. (I'm nearly 33 and am also blessed with endometriosis.) My partner has four beautiful kids and even though we only have them part-time they have given my life a whole new dimension that I just love. They are awesome children - they test me and more than reward me and I miss them when they aren't around. Experiencing milestones with them is pretty exciting too - tonight the littlest one lost her first tooth and I am so proud! In preparation for the tooth-loss (so wiggly but not quite there) we made pizzas and had a pizza picnic on the kitchen floor with red lemonade (a rare treat but it's a special occasion!). They really bring out the kid in me. But, I digress...I do wonder, if we had a baby, if the kids would feel threatened. But I know there is more than enough love to go around in our home, and we have dealt with trickier things in our relatively short relationship. I know my health should be my first concern, but it really is hard to ignore this desire to have a baby. Especially since I know I am with the right man (who, incidentally, is also awesome).  I suspect also that the cave-woman in me really wants to leave a biological legacy - one that merely donating organs when I'm plant fertiliser does not satisfy. You know, the whole blood-line thing. Yeah. Meh. I'm getting bored, and I'm sure you are, so I'll move onto list number two.  Oh, a side note: I'm starting to think red lemonade was a bad idea tonight...the kids are so hyper right now and it's past their bedtime.
Let's see. The second list is kind of a work in progress. It's a combination of affirmations and 'big' to dos. Stuff that I feel I need to tell myself and do to feel good about life and where I'm at. Without totally embarassing myself I will share a few items with you. After all, that's why I started this blog.

1. I am healthy and strong
2. I have MS, it doesn't have me - I'm in control
3. I am beautiful (yes, I have to tell myself this. you should try it.)
4. I deserve happiness

'Big' to dos
1. Join the Alliance de Francaise and finish the full language course
2. Run the Bridge to Brisbane
3. Go to the north pole on that giant ice-breaking ship and see polar bears and other cool stuff (I'm shit-scared of the ocean and boats so this is a scary one!)
4. Ski in the snow

There is more...but I won't bore you with the detail. Or, more like, I won't tell you because you'll think I'm totally coo-coo-cachoo. They're all legal though... So much to do, so little time.


  1. You are still smelling the roses Kirsty,counting your blessings and sharing the love, you are in a good place. <3 SMJ

  2. ohhh i want to know the coo-coo-cachoo big to dos.... i'm intrigued...

  3. Just read up on Ritux, and Interferon, it just seems like every option you have is a case of 'damned if you do, damned if you don't'.

    However Ritux does have a very nasty looking side effect list, and if you're anything like me you end up with everything. Bah humbug. Seriously am I the only person that the pharmaceutical name Rituxan, reminds them of Rataxes from Babar? :\ *insert coo-coo noises*

    I certainly hope they don't put you on that crap again.

    Warning: May contain soppy, heart felt message:

    Can I just say that I have so much admiration and respect for you, someone I look up to and truly aspire to be more alike. I think you're beautiful in every sense of the word.

    Take care, and be kind to yourself! xx

  4. Thank you, lovely ladies! The Ritux is scary but without it I wouldn't be as well as I am today, It's a really tough one. (I don't remember Babar!)Interferons are awesome and really good for your immune system so I'd love to try that for a while - it all depends on what the doc says. Only downside to interferons is I'd have to inject myself very regularly. Ickk. BUT beggers can't be choosey. Anyway...will blog about the doc appt when it all goes down, wish me luck!