Saturday 21 September – Day 11 at home.
Well this is fun now!
My plan today was to deliberately focus on the ok stuff – but I failed because the pain bombs are having a party! I’m trying not to focus on that but it’s kind of front and centre at the mo!!!
I’m very sorry but we’re back to my digestion! And laxatives! Bearing in mind I don’t yet have the joy of knowing or meeting my Neurologist, I’m having to make a lot of this up as I go. Possibly, I’m homing in on things and making spurious connections - but at the moment, all me and Mark Murray MD have as weapons / treatment is speculation! (In fairness I should point out that MMMD’s record on diagnosis is not great – while they were trying to diagnose me he did tell me quite insistently, more than once that it was probably an appendicitis!! I think he also speculated round pregnancy and shingles! It’s not any of those btw!)
Currently the issue is that in the evening, I’m being pain bombed / spasmed so often, there’s no real respite. The bomb lasts about 30 seconds, which is only 30 seconds – but when they’re hitting every 5 mins it means that the 4 and half minutes in between, is just recovery and waiting for / dreading the next wave!
The doctor has doubled the pain meds, and we’re hopeful that once I’ve been taking that a few more days, my system will be drenched and the pain bombs will recede. In the meantime, I’m lying, I’m sitting, I’m standing, I’m leaning – and still they come. They are horribly loud (or rather I am!) and dramatic and now seem to take in everything from my sternum to my feet – particularly my left leg!
ANYWAY … a few days ago I stopped with some of the laxatives, as, let’s just say, things were moving better. NOW, I’m joining some dots….
So – the lesions that caused the initial attack were all originating in or round my tummy – so all that nausea and hiccupping and retching etc. So if all the dodgy nerves are in that area – MAYBE my tummy / gut doesn’t like food in it at night – maybe it all gets backed up!! Thursday and Friday day I worked full days and was fine till we’d eaten – as soon as we’d eaten, I entered a world of pain!
Based on this theory!!.... I’m never eating in the evening again!! - maybe!! Certainly going to try much lighter meals in the evening – and I’m now downing the laxatives like they’re fudge!! Sadly they’re not! But you get my drift! Oooh – maybe someone should make a really good fudge that’s a laxative! Ann?!
In the meantime – I’ve just had a lovely green breakfast – theoretically nice and light, and if I walk a little bit, maybe digestible. On the other hand, I could spend the next 2 hours with pain bombs and spasms, scaring all the locals in my coffee shop!! I’d love a little treat – but the thought of it bombing me later, is enough to put me off.
One of two things is going to happen here, long term – EITHER I’m going to be permanently in pain and unable to walk very far and I will turn, very quickly into Jabba the Hut – OR, I will end up never eating and be a skinny runt – Oh – and apparently some of the meds make your hair thin! And the thermostat thing, could be as much to do with NMO as with HRT!.... The gift that just keeps giving!
Back to the pain bombs / We are also now quite seriously entering the medicinal cannabis space. Not sure quite how it all works over here – but I’ve got an appt with the cannabis doctor next week – and possibly a date with a less official fairy earlier in the week. Either way, don’t care as long as it stops the pain bombs! Apparently a) you can drive on CBD and b) not illegal!
And in all this…working out the NZ health system. From what I can gather, you are allocated your specialist based on where you live, not on what’s wrong with you / what specialist specialty is! Beautiful logic don’t you think!? So, we are now on the waiting list for the consultant in the public system. I am told to expect to be seen ‘soon’ or, ‘probably within the next 4 months.’ Being in the system has the benefit of being IN the system – so I’ll be called for relevant checks and drugs and any infusions etc. Do not fall out of the system! – cause then you have to go back in the waiting list (presumably via the ED) to be back IN the system! IF you’re not sure your doctor is necessarily the right one for you / your condition, then it gets more complicated! So, I asked my GP who she would want to have as her consultant if she’d just been diagnosed with NMO. She told me the same neuro that I’d landed on when I was doing my research last weekend. Very happy. Online seems to be reflected in good reports and reviews both in the system and in the world, so great. My GP has now referred me to the MS / NMO specialty doctor, using my private medical insurance. I called to make an appointment. There is a queue. I will not be seen till May next year! That said – it turns out that my condition is actually literally 1 in a million – and I am currently (I'm told) only the 5th NMO patient in NZ. There is a little itty bitty (not that little) bit of me that wants her to see my case and go ‘oooh interesting – let’s have a look at you!!’ – I don’t know if that’s how it works – but if that’s her area of interest, maybe? In the meantime, if I love my private doctor, somehow we have to turn her into my consultant in the public system, so that I stay IN the system!! Don’t ask, I have no clue! Anyway, joy joy! I’ve got till May to work it out!!
Oh, yes! And the pain bombs have taken my joy from peeing!! Whatever else happens, when I go to the loo, there will be a pain bomb as soon as I stand up after! So suddenly my joyful peeing has become this delay and anxiety about the pain bomb that will inevitably descend as soon as I’m done!
I seem to have deviated!! Good things in life… ?!
- Eating at the table and playing cards / Yahtzee after. If I can’t eat in the evening, I’m going to need to rethink this plan!
- This morning Mark whooped me at cards! But I know I have had 2 recent victories and a Yahtzee win too
- Less good thing - Today was supposed to be the day Lou came up before we flew to Spain
- Good thing – my Lou coming to visit next Saturday!
- I’m sad we’re not flying tomorrow – I had a little miz this morning.
- Good thing – my Lou coming to visit next Saturday
- Bright side – Air NZ have agreed to giving us some credit! Hoorah!! Not entirely sure exactly what it looks like but maybe Sagrada Familia and Parc Guelle are still in sight?
- Love Air NZ
- Walking legs need to do more walking. Being based at home this week has meant I’ve done farrrr too few steps. I’m not unduly worried – but I feel like the less I do the heavier they’ll get
- I keep shopping! Stop me!!
o Max have delivered a lovely skirt and top.
o Temu are bringing me pink shoes a denim skirt and a phone case
o M&S are bringing me 2 white shirts, another denim skirt and some loafers
(I keep forgetting that Mark might be reading this!... lots of it will go back – honest!!)
- The big good thing….
So here’s the thing – last week a friend described the years after 60 as being like a sniper ally. i.e. if you’re not going to get hit by one thing you’re going to get hit by another – or you’re not. Bottom line, the NMO is my thing – it could just as easily have been cancer or heart attack or being hit by a bus. So on the first hand, we get on and deal with it – others are dealing with their sh*t too. Hopefully – most of you will waltz beautifully and elegantly between the sniper fire. Those of us who get a little hit… well, it’s kind of part of getting older and the only thing we can do is get on with it and make the most of what we have. Cause while I’m wallowing in pain bombs and a little bit off irritation and whinery… (ooh, Waiheke!!) I’m also still luckier than most of the people on the planet. When I remind myself of the life I’ve had and the people that I have around me, what’s to moan about? Admittedly there’s a lot more stuff I want to do and see and experience – but who’s to say I won’t. In the meantime, I still have wonderful family and friends, a job that I enjoy and that adds value, dreams of travel, plans to see people and be places and I get to live in a beautiful country, in a lovely little house, with a gorgeous back deck overlooking the biggest blue sky and a gulley of trees. I have a Yumster who love me and daughters who bring me joy. Sure NMO diagnosis is pants – but I’m still here, life goes on!
(oooooh! Turned it around!!!!!)
Big Snogs – love ya!
Btw – Dear Record Breakers, my pill tally at breakfast yesterday was 14 – is this a record!
Happy weekend lovelies!
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