Dear
all –
Thank
you so much for the continued kind words and check-ins – it’s hard to believe
that more than a month has passed by since the surgery! (though when one sleeps
this much…!) The staples have been removed, and both scars are healing up very
well. (X-rays in August to assess how well the bone graft is taking.) As Greg was explaining to a friend this week,
we have now reached the stage that is most difficult for folk to understand,
because we are back into the realm in which RA takes the dominant role. Risky
surgeries, compromised brain stems, and threatened arteries are so much easier
for most people to grasp. And, because these all existed as issues within a
limited timeframe, they are easier to emotionally process. The biggest danger
now past, healing from neurosurgery will take time but will progressively
occur; the RA, on the other hand, continues its steady toll. Chronic pain (and
how it affects even one’s carers) is a difficult thing to explain, and not
something many people even want to understand: it’s awkward, and seems nonsensical.
(For those of you who frequently engage with someone with a chronic disease, I
highly recommend reading this short analogy, introduced to me by my cousin: www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Like all analogies, it is imperfect – but it’s possibly the most helpful &
useful explanation that I’ve come across.)
For
the past week & a half we’ve been in a tough uncharted territory. We’ve
done the ‘RA-thing’ for almost 20 years now (and I say ‘we’, because my RA
affects Greg’s life as much as it does mine) – but never have we done so
without RA medication! Even when the meds were ineffective enough that I was
bed-bound for months, or in the wheelchair for years, I was still on the
doctor’s best-guess of a chemical cocktail. But right around the time of the
conference here at the farm, my body really passed the mark in which the areas
affected by surgery became almost non-entities in contrast with the RA pain. My
neurosurgeon has continued to hold to his demand of “no anti-inflammatory meds,
nor RA-specific meds, for 2 months.” But we got to the point at which –
regardless of morphine amounts – my pain in the mornings was significantly
worse than anything I had experienced post-surgery in the hospital. (For those
unfamiliar with RA, mornings are always the worst for both pain and mobility–
one ‘greases up’ through the day, with late afternoons/early evening usually
being the best zone, and then a slowing down again in the evenings.) Greg has
been having to lift me out of bed and into the wheelchair every morning, to get
me across to the bathroom – and it’s been increasingly excruciatingly painful.
This morning was close to untenable -- I actually thought: “if I can’t get a
steroid shot from the Rheumatologist today, I’m going to have to go back into
care of some sort – neither of us can do this.” (The craziness of RA is, folk
who saw me even a few hours later would have had no clue of what we’d gone
through: I looked stiff and sore, yes…but I could move myself with my walker,
smile & be pleasant, and ‘carry on’…) But,
bless
my Rheumatologist, she said at today’s appt: “Your RA tests in at 100% worse
than when I saw you just before the surgery: I’m giving you a full-body
[intramuscualr] steroid shot. If the neurosurgeon is unhappy about this [I’m
sure he will be] send him to me.” She muttered
a bit of the old complaint that I hear from rheumatologist friends as well –
about how impossible it is to make doctors who deal mostly with ‘fixing-up,’
understand the nature of chronic progressive ‘unfixable’ diseases. I recalled the day I’d left the hospital: I clearly
saw that lack of comprehension in one of my doctor’s faces, when, after he’d
told me I’d start feeling much better each day now, I tried to explain that no,
because I was off all of my arthritis meds, I knew that I’d actually be feeling
increasingly worse each day until I could resume them [let alone, that parts of
me would actually be getting increasingly worse, as RA damage is
undoable]. How hard it must be when even one’s colleagues don’t get that about shared patients! Anyways –
that
big steroid shot my Rheumatologist gave me today will start working like magic
– really! – and Greg & I should have no more excruciating mornings. She
also told me to definitely go back to a full dose of anti-inflammatories, and
to resume 1 of my RA meds. (She concurs with the neurosurgeon that I shouldn’t
resume the other for 2 months). My hope & expectation is that this means I
shall – bit-by-bit – start getting back to at least close to my normal.
It
also means that Cambridge will be
possible. The past 10 days had made Greg & I quite concerned about that.
So
– a huge huge thanks for the miracles of modern medicine…as well as for my
Rheumatologist. It’s humbling to realize what one knows, but so easily forgets:
that not many decades ago, I’d be permanently in that excruciating RA pain, if
alive at all. Please do encourage all the medical researchers you know – they
seldom get the [deserved] kudos of a surgeon, but without them too, many of us
would not be here!
I’ve
nattered on much longer than I like to about RA & pain etc here – but I am
increasingly convinced that it’s important to be publically open and honest
about journeying with such challenges: how else can we know that we are not
alone, that there are other humans with whom we can share and from whom we can
learn. Being praised for ‘never crying,’ for never showing or admitting to how
hard things may be (whether the trials are physical or emotional), breeds a
damaging sort of pride. And it helps no one. An Oprah-style ‘advertise your
baggage’ culture is not healthy, but I think its attraction emerged from an
equally unhealthy ‘pretend all is well’/‘put on a happy-face’ culture, that
lauds a façade of ‘you’d never know anything was wrong.’ Honesty is another
name for Truth, and I do believe that the more honest we are about pains and
trials, the more able we are to celebrate our joys – of which there are many,
and usually, more.
On
that note, thank you to those of you who were also praying for the conference
in late June. It went very very well. Team mtgs were held around my bed (thank
you Greg!), and although I was stuck here throughout, video streaming was set
up so that I was able to listen in on every session, even if in my pyjamas:
such a gift! The Team of volunteers who made it all happen were incredible –
and amazing at looking after me in addition to ensuring the conference ran
smoothly. Bruce & Ivan were wonderful – the delegates left hungering for
more. Even folk who were just on the peripheries, or only attended the public
performance on Thursday, repeatedly shared their enthusiasm and excitement over
this venture of the ‘Linlathen Lectures.’
And, I am hugely grateful that the RA became its ugliest after the
conference had ended – one more grace, amongst a myriad.
*
* * *
I
wrote the above in a couple of stints last night. It is now 6:30am and I have
just returned from my morning ablutions – alone! Greg is still blessedly
asleep…or, was until I kissed him awake whilst standing beside the bed. He was
satisfyingly stunned, and now has slipped back into sleep again – may he ‘sleep
in’ long and well. I might just do a
little more myself now. J
