OMG I can't beleive it's been 3 months since transplant!!

16th January 2015

Day 0+92 (3 months!)

I have to say straight up I can’t believe it is 3 months already since my transplant, how much has that time flown!  (Can’t believe it Matt, can you?? – she says arrogantly assuming he might be interested in reading my blog!!)
  
So it’s 2015, Happy New Year!!  2014 what a year! - the most unexpected happened and it was hard but we made it and we are stronger for it – 2015 is going to be amazing, I can feel it in my bones!!! (literally – some of you will understand that one!!!)

It’s hard to believe that this time last year we were just returning from a family holiday for Christmas and New Year to Hong Kong, Thailand & Singapore,  – HSCT was not even on the horizon at all, we had no knowledge of it and as far as we were concerned I had MS, was on a DMD for life and we had to deal with it,  a hard pill to swallow (or monthly infusion should I say), I know not really funny.... 


Isabelle & me at Singapore Zoo

I was really excited about the holiday but I was pushing myself to do what we were doing as I knew there would be walking or wheel chairing for theme parks, zoos, city sites, shopping – lots to see and enjoy but I knew it would be hard (and it was).  I was also thinking, considering my deterioration since July 2012, it might be the last holiday where I’m able to walk well enough to do certain activities.  At the time I was a combo of walk on my own (short distances), or with a cane or husbands arm or one of the children’s hands for balance or wheelchair for the longer distances.  I was then on a DMD called Tysabri and hadn’t seen any improvement or stabilisation of my disease so my future looked like it was on a downhill slope in regards of my MS.  

Paul & the kids had to go without me

The holiday was amazing..  I managed to do almost everything, walked as much as I could and then wheelchair when needed.  One thing that stuck with me that I couldn’t do was the elephant ride.  I wanted to go on with the kids and Paul wasn’t fussed so he stayed with the wheelchair, we bought the tickets but as I was in line watching people go on before me I realised that I couldn’t.  You see it was quite a quick change over between groups and you needed to able to push yourself up onto the elephant, well with my leg power that really wasn’t going to end well if I tried so I called Paul and tagged out!  Next time I’ll be able to do it!

I’m not about to write about my whole year I was just reminiscing about where I was at the beginning of the year and I’m still amazed at what has happened.  That turning point in March when I watched Kristy on 60 minutes and found out I had HOPE for the future and maybe we could still do those amazing holidays we want to do.  I know you can do amazing holidays without the ability to walk but when you could and then you can’t you feel ripped off and of course then those are the things you want to do!  Lying by a pool on a tropical island is always top of my list but with my failing legs then skiing in the French Alps or climbing Machu Picchu became top of the list – hopefully I’ll get there now!!    

On my list!

Okay so I have to say I’ve started this a couple of times now over the last few weeks but have not managed to finish as the writing hasn’t flowed or babbled out as it has before.  Not sure why but hopefully third time’s a charm and I’ll get it out this time!  I think it’s easier to write everyday than to write occasionally as trying to remember what’s happened over a few weeks can be harder than what just happened that day..  Anyway I won’t bore you with everything as I have really kept to myself and not ventured out much as I have been very much OCD with my germ protection which has paid off as here I am at the 3 month mark and I’m very healthy indeed.  I saw my local Haematologist yesterday and he is very happy with where all my numbers sit with my blood work so much so that he now doesn’t want to see me for 2 months!!  I’m struggling with that one a bit as it felt like my safety blanket having the visits to look forward to but I know I’ll be okay – I know where he is!!  And I know I can phone or email his assistant anytime and she will get any answers for me if needed.


My bro & me

I’m going to list the good and the bad that’s been happening.  Now when you look it might look like the bad outweighs the good but let me tell you the good things that are happening hold a lot more weight than the bad so really that list is actually longer and that makes the future definitely look brighter!!

GOOD
These are things I can do since HSCT that I couldn’t do before!
• Walking without a cane, I haven’t tested this much on the outside world as I haven’t been out much but so far so good
• I can walk 1.5km on the treadmill, only at 3km/hr but that’s pretty good for me
• I can do 4km on the exercise bike
• Wii Fit – Step Plus, Obstacle Course, Ski Jump (I screamed when I got this one as I couldn’t get my legs to push and snap properly a few months ago)
• Met my Physio from MS QLD and had an assessment (which I’d also done prior to going to Moscow), results were very promising!
• I think my MS fatigue is gone..  I still get tired but I think that’s for other reasons.  I can watch TV until 11pm and stay up late reading a good book – this is exciting!
- Stairs - I nearly forgot to add this one in..  I can go up our home stairs without holding the railing, woohoo!, 17 steps I just got Seb to count.  Still have to be careful on the way down though..

BAD
• Head Heat / Hot Flush - my head gets so hot and then sometimes the rest of my body follows and I have to quickly get in front of the air conditioner.  This is not helped by the fact that it is summer and so hot here and the humidity is ridiculous.
• Sleeplessness – sleeping is horrendous (as Paul can very well attest!).  I toss and turn most of the night and then of course have trouble getting up in the morning.  The hot flush thing makes this worse of course as it happens through the night
• Joint pain – my joints hurt (this one is quite new).  Even my toe and finger joints which makes it hard to push myself off the ground especially since my leg power is very ordinary to say the least
• Muscle pain – this started a few weeks ago.  I only do light exercise but my body makes me feel like I’ve run a marathon.  It’s especially worse when I’ve been sitting down for a while, once I get going it’s not too bad but when I start going I feel like a very old lady (or the tin man!)
• Sternum pain – this one comes and goes and hopefully it will go again soon.
• Swollen feet, ankles, legs – oh joy!  I’m sure this one is made worse by the heat that’s for sure..
• Tears – they still come out of nowhere sometimes out of sheer frustration that I’m not on top of my game.

These things I’ve listed in the bad list, although not great, will hopefully be temporary.  I’ve asked about them on the forums I’m part of and others have experienced similar things and they’ve eventually subsided at differing times.  My Haematologist said some of them could also be attributed to early menopause or temporary menopause so we’ll check that out if they continue in a few months – oh what fun early menopause would be – oh well, worth it in my books!


Hair!

My hair has started to grow or should I say sprout!  I did shave it again since I’ve been home as it started really patchy but now it seems to be growing okay, just a bit thin which doesn’t look great but I’m told it will thicken up over the next few months.  I think it looked better when I was shiny bald than this thin hair look – thank goodness for the scarves, the wig hasn’t made an appearance outside the house as it’s just too hot for me.  Money well spent – I think not!!

My fingernails look really interesting, will have to post photo of them..  They have these interesting lines through them and the bottom part is really light in contrast.  I believe it’s a chemo line and shows the new growth I’ve had since I had the chemo, I kind of quite like them as they look so different!


Not sure if I’ve mentioned before but I’ve seen my Neurologist since I’ve been home and he was really interested in everything which is fantastic.  Not all neurologists are keen on their patients pursuing HSCT, I seem to be one of the lucky ones who has this support.  So when I saw him I talked to him about Rehabilitation and he referred me to a specialist Rehab doctor who I will see next week and begin rehab with – this is very exciting, bit slow with this happening due to Christmas/New Year period but it’s now happening and I can’t wait to start!!
I think that brings me up to date..  School Holidays will finish after Australia Day (26th Jan) so that will be a rude awakening to real life again.  Kids have been amazing with just having a relaxing holiday time at home with not much happening.  They did have a great week with their cousins visiting over Christmas which was lovely and luckily they have had their Grandparents still on hand to take them out which has been amazing.  They’ve been ice-skating a few times with Grandad which they really enjoy – can’t wait till it’s my turn to try it with them!!

I updated my Wii Mii!

The Rollercoaster will continue for some time and even though I’m having these amazing improvements we don’t know what the future holds.  I have to remember that the hope was to halt my MS (which I already feel it has) and anything extra is a bonus. 

We continue to be positive and I’ll “Be Strong, Be Brave and Be You” and I have to say with all the ups and downs, and I know there will be more, I feel more like me than I have in some time!!

Hope your 2015 is starting out amazing!

Nat xx