Monday, 23 July 2012

Ain't no mountain high enough.

For those of you who follow on Facebook you'll know that it hasn't been the rosiest time here at Chateau Rusty. Last Wednesday saw me at the neurologist's expecting to organise a long overdue repeat MRI and EMG. Instead, I was met with a worried and confused neurologist who wants me hospitalised for a few days to be investigated by various specialists and have a large number of nasty tests. From nerve and muscle biopsies, to the dreaded bone marrow biopsy, and everything in between. All to be followed by being presented to the neurology department for discussion and brain storming. Amyloidosis rears it's ugly head again, but this time is joined by a long list of barely pronounceable diagnoses, all of which fall into the Oh Shit category.

Still waiting for the coordination to be worked out. Hopefully, I can be knocked out and the pathology guy can go crazy taking all the biopsies in one hit. Fingers crossed that works out. And that there are good pain meds when I wake up. At the very least she has promised that I can be sedated for the MRIs and for that alone I am grateful (long time readers will recall my pathological aversion to MRIs from here). As we were shuffling out the door I realised I'd lost track of all the tests she ordered half way through. I'm thinking it was some sort of dissociative fugue, brought on by my lack of mental preparedness for her reaction and general pee my pants fear that threatened to bubble over. 

Whilst I am glad that she wants to really investigate things for me, it was all rather confronting, and if I'm honest, it is just a wee bit scary. I'm used to my decrepitude. It is my normal, but apparently to others it is rather high on the abnormal scale. Amongst other things I've managed to completely lose the reflexes in my feet and even my tongue muscles are wasted. What this equates to I don't know, well apart from adding to my "interesting" factor. I knew my neuropathy had spread and my functioning had decreased, but as the L-Plater is known to say, it seems "Shit just got real". Very open to hugs, well wishes, crossed fingers, prayers and whatever good vibes to which you happen to subscribe, at this point.


I have decided to face the prospect of hospitalisation, painful tests, and a less than stellar diagnosis in the only way I know how. Denial. It's a very pretty place and I'm quite happy here. I like to think it's a bit like Moldova's 2012 Eurovision entry (Thanks Kate for reminding me). A little bit out there, but with an annoyingly catchy tune. (Love that Sweden's, Loreen (my mum's side of the family) won this year. But trying disparately to forget my Dad's Irish heritage in the form of Jedward. Okay, I may be a bit addicted to Eurovision. For those who've never watched or heard of Eurovision, you must watch this fascinating documentary on it's history. It's available on Youtube in 9 parts). 


In the meantime I have set myself some challenges. First of those is to get out each day and walk to the top of our road and back. It works out at about 100m but it's uphill, so I figure that's about 1km on a flat road. Plus, it has the added advantage of allowing me to roll the whole way home if my legs give out. I wouldn't attempt it alone and luckily Mr Grumpy is happy to come with me to hold me up, or carry me home, as the case may be. It's not easy. Half way up yesterday I thought my lunch was going to come back and say hello. And by the time I managed to get home my bp had dropped and I was in need of a nanna nap. But at least I was out of the house for once. Once my body stops feeling like someone attacked me with a crowbar I'll be out there again.




I know 100m seems farcical to those who are well. But I can tell you with absolute certainty my fellow Bobetts will be sending high fives and waving pom poms, at such an incredible feat. Given how much my health has deteriorated over the last few months, this one pissy hill is like Everest. And I'm going to given myself a pat of the back.


Next on the list is to do Deepak Chopra's 21 Day Meditation Challenge. I have been doing meditation on and off for years but always end up side tracked. Prior to my increased mobility issues I had hoped to go to the local Buddhist temple and learn there, but that is just a logistical nightmare at the moment. So when friend and fellow Bobette, Coppelia, posted this challenge I thought it sounded like just what I needed given my stress levels are a tad high at the moment.


Bonus is it's free. Important when money is tight. I also know that once signed up I'll feel like I have to do it, rather than make excuses. Mind you it's only 15mins for each class. If I can't find 15mins in my day for meditation something is very very wrong. Two days down so far and I must admit I am enjoying it.


So between my daily 100m walk and meditation it has to help. Tell me it will help!


Cheers
Michelle :)


PS Don't forget to enter the Pampering/Thank You GIVEAWAY. 
PPS I am working on a post of Answers to all the Questions left on this post. It should be up soon.


Can't go past a bit of Kate Bush musical accompaniment. Just replace 'Running' with 'Stumbling'.

I've added Wuthering Heights as I may have mimicked Kate Bush's dancing skills and singing on more than one occasion over the years. A little tip: don't try her dramatic dance moves when you've had a glass of forbidden wine. You're tail bone will not forgive you when you land on it.

7 comments:

  1. Trying to get all fancy on me, are ya? While you're there in the land of de- Nile....just imagine your having a spa vacation. If they give you some fluids, it will plump up & soften your skin very nicely. Sedative with MRI? This will be great to "get your mind right," woman. Perhaps put some flowers in your hair. This will be perfect for your meditation challenge as well. If you can find the stillness in that setting- you're good to go.
    Love at you.
    Your favorite Gangster.

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  2. Big Hugs from Texas
    Good Thought from Me
    Still Grumblin'

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  3. Love and lots of hugs and prayers and such...
    xoxoxo
    Claire

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  4. Re: all those lovely biopsies, have you ever been knocked out before? Not knowing, I'm worried about you and the effects of the anesthesia!

    Is it OK that I'm jealous of your MRIs? LOL--I haven't talked the powers that be into giving me one yet.

    "A little bit out there, but with an annoyingly catchy tune." I feel that way about Romanian-language pop music in general. This is one of my favorites:

    http://www.youtube.com/watch?v=WTnVPDmMuE4&feature=colike

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  5. Oy vey Michelle it's no one looking at us or every nook and cranny.. My thoughts any orayers are with you and as akways thank you so very very much for sharing your wonderful gift with words as you speak for so many of us.

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  6. I feel ill, so for once a short post. Thinking of you as always xxxxxxx

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  7. didn't mean to say post, meant to say comment. You know what I mean.......

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx