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Colleen Displaced

one ordinary woman -vs- Multiple Sclerosis

You have to laugh! (and my HSCT secret)

August 18, 2016

So I said to myself ...'why not?' (plus, wanna know a secret?)

Hi there and welcome back.  I've been a little quiet I know, been getting my head around all this 'blog' stuff.  Well, I've been busy with other stuff too.  You know, living and all that.  But here I am again, and looky there on the left - a cartoon!  

I can explain. Not so long ago I was running a little business from home, writing a newsletter that was distributed to local businesses, and to do that I needed 'general interest' articles and little things to entertain readers.  Realising that I was still subscribed to the service that provided those little tidbits I thought to myself 'you idiot, why not use those on your blog' and so this cartoon is the first of some little extras you'll be seeing here! Hope you like.

Apart from that I've been tossing around lots of bloggy things in my head, and reading and googling lots, because seriously, I know very little about blogging.   With all that googling and reading I discovered that any self respecting blogger is supposed to have a niche.  Great.  I was supposed to come up with a niche.   Now, I happen to think that having Multiple Sclerosis as a niche is pretty sick.  Not 'sick' as in 'fantastic' though, I mean sick, like sick.   Of course this one glaring omission could have been tragic.  But no, I'm the expert remember (and I'll keep telling you that until its engraved in your brain.  I'm your expert on Multiple Sclerosis).  Why do I do that?  I don't know, honestly I don't.  Except that it pumps up my ego.

Anyway, I will of course continue to write about life with MS, because, you guessed it, I'm the expert on everything MS. If you've been reading along with me you'll know that's a joke, sort of.  If not, you have my permission to laugh, ha ha, tee hee.

Thing is, without MS, I'm stark staring nicheless I suppose.  Which is not where any decent blogger should be.

SO.  Question:  What's a novice blogger type nicheless MS-ridden person to do?  Answer:  Write.

Write.  It's the only answer I came up with.  And seeing as that's what I do, hey, write is what I will continue to do.  And I'll write about whatever I like dammit.  And I'll throw in a cartoon or puzzle wherever and whenever I like too.  

Because, by the way, MS isn't what I'm made up of.  I mean, it's not the whole me.  I'm a normal living breathing female human being.  Who happens to have MS.  See?  MS is just another of the little things that make up this woman typing away here.  She's got a lot of other stuff going on.  Seriously.  She gets into things, gets her teeth in once she gets a whiff of something intriguing.  And by crikey she loves to write. 

Enough of that.  But at least you know a little more about this ColleenDisplaced woman.

Now, I have a secret.  Shhhh (I'm actually looking left and right it's that secret).

Ready?  Here it is ...

I'm seriously thinking of having HSCT.  It's all the rage with us MS types.  HSCT stands for Hematopoietic Stem Cell Transplantation.  It's a treatment that involves chemotherapy, and while its been approved to treat other serious medical conditions all over the world, here in Australia it isn't approved for the treatment of Multiple Sclerosis.  Despite the fact that it seems to work, by either stopping progression of the disease or totally obliterating it.  A lot of people have got their life back after having HSCT.  A lot have had the progress of their disease stopped.  And some, in the later disease stage, have seen no improvement.  I do still walk, and think that now's my time.  Time to stop this rotten disease, or maybe even get rid of it.  There is a trial for HSCT under way in Sydney, but the criteria includes that you must have active lesions showing on MRI.  It all gets a bit technical, and I won't waffle on about all that.  I'll just say that I dont meet that criteria, so I haven't been able to get into that trial.  Which means if I want to have the treatment I will have to head overseas.  I've pretty much decided on Russia.  Those guys are super smart over there.  They know their stuff. And after lots of researching they seem to have a very high success rate.  So that's probably where I'll head, once I make the final leap.  It's not an easy decision.  HSCT involves chemotherapy, and a quite long recovery period.  I'd lose my hair, and feel awfully sick.  Maybe even worse.  Am I brave enough?  Should I burden my husband with more than he already has to deal with?  I think that's the major stumbling block. My husband shouldn't be my carer.  I think that's an awful thing to do to anybody.  Of course I could be totally ok when I get back, lots are, they pump you up with steroids for a month after your return home.  but I don't know for sure that I'll be ok after the transplant.  I've prepared an email to send to the hospital in Russia, haven't sent it yet.  But I'm all ready.  Tinkering on the brink I guess you'd say.  It's all doing my head in right now, but I'll keep you posted.  

All for now, be good to yourself

 

 
   

 

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