Thursday, 14 January 2016


I can't believe my last post was late November!  That's disgusting!  Hopefully you have all been far too busy enjoying Christmas, New Years, Summer and holidays to worry about reading my blog!

I had a quiet Christmas but was pretty stoked at myself for doing ALL my Christmas shopping via the world wide web!!  No car park squabbles; no sneaking out without my daughter; no going from shop to shop trying to find things etc!  One thing I was bummed about was we didn't get out annual Christmas photo with Santa....BUT I'm guessing he'll be at the shopping centre next year and it will be a story to tell when we're explaining WHY there is no 2015 photo!  As for the online shopping - I'm seriously considering doing the same this year!!  It was bloody brilliant!

We had Christmas lunch with my family and dinner with my hubby's brother and cousin and their families (his parents and other brother live in Qld) pretty low key.  I missed out on going to Christmas Eve Mass (which I LOVE) and missed any and all Chrissy get togethers and drinks ... but not to worry... there's always this year!

On New Year's Eve, I reached +100 days (since transplant) and this meant I was allowed to start to get out and re-connect with the world!!  I am (still) a little hesitant in this regard but we did go to Robe (a local beach village that I LOVE) for 4 days.  It was MUCH different this year though as I didn't get to the beach much or down the street (as the population of the town swells to incredible numbers over Summer), but I did go for coffee (of course), 1 day at the beach digging holes with my daughter, the ice cream shop etc.  We had a nail salon night and played board games and such with the kids at night so enjoyed lots of laughs with family and friends!

I headed up to Adelaide from Robe and saw my Haematologist on 4 January.  My bloods were again all within the normal range and he gave me the green light to get out and about more and 'carry on' with life.  So this is exciting even though I'm still being careful.  I haven't really done too much with this new-found freedom.  I went to a quiet session at the movies; went out for dinner for my mums birthday; more coffee; gone to mum and dad's for a not much at all.  I'm yet to venture into a department store or grocery store (or any crowded venue) as yet but I'm heading back to work NEXT WEEK so things will get back to (safe) normal quite quickly!

I'm so excited about returning to work.  The first couple of weeks will be with skeleton staff and no students (who I don't deal with anyway), and then the term starts! I'm not too nervous about this as I work in an office by myself and everyone is aware of my situation.  I am starting back part-time and will build from there!  My work has been INCREDIBLE and I can't wait to be back there!

Unfortunately, I am yet to see any improvements in my symptoms but the procedure only ever claimed to HALT the disease.  Many patients (I mean MANY) have had marked improvement in their symptoms so I now (selfishly) want that too (whereas before I just wanted to stop it)!  After reading many other patient blogs, I understand that improvements can take a while to become apparent - especially considering I had Primary Progressive MS and had it for so long (14 years) but I pray and hope that this year will see me walking better, faster, longer etc...and hopefully in a) heels and b) thongs!  I don't see my netball career being resurrected but it WOULD be nice to ACTIVELY participate in my daughter's/hubby's life a bit more, walk along the beach, shop for more than 5 mins in a shopping centre, walk to the park etc.

What else can I document...Oh yes - I have TERRIBLE nights!  My legs ache and I have this restlessness with them so I'm tossing and turning all night!  I'm also having hot spells (only at night) so the quilt is on/off/on/off also.  Imagine this for my husband:  tossing, turning, sighing, throwing covers off, turning, putting covers back on...daughter coming in a 2am (Argh!)....too hot, turn over, too cold, stretch, back hurts; curl up...nope - stretch out again....oops- too hot...covers off and so on.  All night, every night!  This is a concern with work looming! :) 

I'm wondering if the hot flushes are the start of menopause (OMG when did I get so OLD).  I understand that this can be brought on by the procedure and I haven't had a period in 3 months so....yeah - there's that.  Time will tell I guess and I'm not particularly fussed either way.

My hair is SLOWLY growing back and I'm comfortable not wearing a wig or scarf even though I know I look hideous.  I'm used to it now and "it is what it is" so I will just persevere with it.  It is definitely not blonde anymore and I think it's coming back fluffy and GREY (to add to the menopause above)!  Oh well - it IS growing so let's just be thankful for that!! :) 

As I'm sure to have told you, I started some PT work.  We stopped over Chrissy / New Year and I have been so slack with bike riding (I have a stationary bike here) and doing my home exercises.  It's been HOT here in SA and I am embarrassed to say it just fell by the wayside with Christmas, New Year, Robe, school holidays etc.  My whole exercise regime at home takes about 30 mins so I have no excuse but I will start with gusto again next week.  I have put it out there now (to you all) so I have to come through with the goods!   I'm also starting a 30 day clean eating 'challenge' in February and starting to take some come March - I'll be FAB-U-LOUS I'm sure!

If you don't know me, I am fairly small naturally but have been housing a rather um..."spongy" belly since my return from Russia.  I am (still) telling myself that this is WITHOUT DOUBT bloating due to the steroids I had in Russia but ... 3.5 months down the track I'm not sure how much longer I can convince myself of this!!  :)   Mind you - in my defence, I haven't been able to eat fresh fruit and veg since my return so I've eaten a lot of (I've also been eating tuna, rice, steamed veggies, protein etc as much as I can....but who can turn down a packet of Kettle Chips)?!  I'm finally allowed to eat fresh fruit and veg and we've enjoyed lots of salads with (overly) washed fruit and veg!!  (Yes - I'm a tad OCD)!  I cannot tell you how great Watermelon tastes after you've been denied it for a few Summer!!!!! Oh my Lord!!

Okay - I think that's really it for now!  Thank you for your continued support!  I remain positive and thankful to you all and for the opportunity to have this amazing treatment! 

Let's hope my next entry talks about the incredible improvement in my gait and all things wonderful! 

Love to all!  Mary OUT.

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