Day 96: well, that’s that then

After reporting my last set of dodgy results to the rheumatology hotline two days ago, I picked up a voicemail today telling me to ‘stop taking my methotrexate straight away, arrange another blood test for next week and then give them a call – leaving a message if I couldn’t get hold of anyone.’

That was it.  There was no discussion about reducing my dosage again; no explanation about why my bloods were behaving erratically; no ‘we need to see you to talk about your options’;  no reassuring me everything was in hand; no nothing. Hell, they didn’t even get the right meds.  The last time I checked I was on azathioprine, not methotrexate.  It’s rather disconcerting when the people in charge of your health can’t get even the basic facts right.

So here I am right now, a mixed bag of emotions ranging from frustration and disappointment to anger and relief.  I know, I sound like the character line up for Inside Out.  Or should that be:Inside Lupus

The more observant among you may have noticed that Joy is missing…

First in the line-up is frustration: it took me a good four months to psych myself up to take the drug in the first place, not to mention the endless weeks after I started, when I felt like absolute shit.  This all feels like it was for absolutely nothing.  The disappointment is because it’s only very recently that I’d finally started to feel the benefits – and it was giving me a sense of hope.

Then there’s the anger because I can’t believe the prescribing, monitoring and stopping of a medication like this is handled in such a haphazard, ‘no one really gives a damn’ way.  Come to think of it, I’m not even sure my care team would have noticed something was up if I hadn’t called to let them know.  Slightly disconcerting.

And then finally there’s the relief, which admittedly seems to contradict the three emotions that go before.  Only yesterday I read a blog that reminded me about the links between taking these chemo drugs and the increased risk of cancer further down the line.  I had a mini meltdown (the 100th of the week) and all my worries that I had to block out just so I could swallow the first pill came flooding back.  I started to second, third and fourth guess the decision I’d made.  What if I was ‘borrowing time’ now to control my Lupus pain, but as a result, would increase the chances of that ‘time’ being snatched back in the future by a deadlier disease?

Of course, it’s an unproductive way to think as no one can predict what lies ahead and there’s such thing as a correct answer.  I guess the question is: what price do you put on the quality of your present life and what risks are worth taking?

I feel quite wrung out by the whole experience, but I guess it was worth a shot. Being a person who believes that everything happens for a reason, I’ll just put it down to my body deciding this wasn’t the right treatment for me.  How very rational and Zen that sounds, even to me!

So until someone with a medical degree tells me what happens next, it’s onwards and upwards, I guess.

If you want to recap on the whole azathioprine drama, it started from here: The Indecision MonthsDay 1, Day 3, Day 7Day 10, Day 20, Day 60 and Day 94.

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Day 94: what do you mean I’m abnormal?

Four weeks, multiple blood tests and endless phone calls later and I get the feeling things aren’t going so well.  Well, isn’t that just typical.  My energy levels are finally up and the pain’s under control, but lo and behold my treacherous body just ain’t having none of it.  I ask you, if you can’t even expect a bit of loyalty from your own skin and bones, what hope is there.

I’ve had one set of dodgy blood results after another.  One minute I’ve got a low white cell count and poor liver function; the next my white cells are on the up but my bilirubin levels are elevated; the next my liver is feeling happier but my white cells are dropping off and as for my neutrophils, well they’re now going into free fall.

For the record, I haven’t got the foggiest what’s actually going on inside me right now.  I know I should probably be all clued up on what’s what, but I haven’t the faintest idea what a neutrophil is, does or even looks like. Or, for that matter, why my GP is currently freaking out because I should have more.  Her last message on my voicemail told me to call her back immediately to discuss my ‘abnormal results’.  Sugar coat it why don’t you.  Naturally, this sent me straight back to panic station central.  I’ve decided, I don’t want to be sick anymore. Can someone stop this train and let me get off?

I probably wouldn’t be so alarmed if I thought my rheumatologist gave a damn – but it definitely doesn’t feel that way.  From where I’m sitting, it seems that he gave the OK to pump my body full of chemotherapy, then, job done, buggered off to do something more fun himself.  Like golf perhaps, or a spot of fly fishing.  After years of seeing him religiously every 6 months, I’m now not scheduled to check in with him again till January 2017.

What the hell? Another 8 more months of this stuff and I could have grown an extra limb or a set of gills. Or turned a fetching shade of radioactive blue.  I’m thinking something along the lines of Jennifer Lawrence in X-Men, just with smaller, post-breast feeding boobs and considerably less muscle definition.

Rewind to Day 60.

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A video that sums it all up

Now here’s a brilliant video that every spouse, family member, friend, colleague and boss should be asked to watch. Under duress if necessary!

Well done and thank you to Lupus UK for summing it all up so brilliantly.

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What is Sjögren’s Syndrome?

Bus stop signAutoimmune diseases are a bit like buses.  You wait bleeding years to be diagnosed with one, and then several roll up at once.  Sjögren’s Syndrome (pronounced Show-grin’s) is one such bus.  It’s often to be found hanging around with bigger, nastier members of the autoimmune disorder family, such as Lupus and rheumatoid arthritis.

Anything ‘autoimmune’ basically means that instead of protecting the body from infection or illness, the immune system reacts abnormally and starts attacking healthy cells and tissue.  In the case Sjögren’s, the body’s immune system attacks glands that secrete fluid, such as the tear and saliva glands.

This shortage of crucial moisture leads to the two main symptoms: dry eyes and dry mouth. For women (who account for about 90% of all Sjögren’s cases) dryness can also be something of an issue ‘down below’.  Yup, when it rains it really pours.  OK, probably not the best analogy to use in a case like this.

In more serious cases of Sjögren’s Syndrome, the immune system goes one better and attacks other parts of the body as well. Symptoms include muscle pain, joint pain, stiffness and swelling, vasculitis (inflammation of blood vessels) and brain fog (difficulty concentrating, remembering and reasoning).  The two worst symptoms (personally speaking) are the crippling chronic fatigue and joint pain.  Though to be honest it’s hard to know these days which of my symptoms are coming from the Sjögren’s and which from the Lupus.

While it’s not a killer, having bone dry eyeballs can have a major impact on day-to-day life.  If nothing else, it can make you look even more bloodshot and bleary-eyed than normal.  Sometimes my eyes get so dry it feels like my vision in completely blurred, even though I can still see perfectly.  It’s a horrible feeling, and I find myself constantly pulling my eyelids down to try and ‘shift’ the haze.

The symptoms of dry eyes can be made worse by sitting around in air-conditioning, sharing airspace with a smoker or walking outside in the wind.  Travelling on an aeroplane can be sheer hell.   Watching TV or staring at a bright computer screen for any length of time (like I’m doing right now) can also become painful.  I think this has something to do with not blinking as much and the eyeballs drying out quicker – but don’t quote me on that.

Having a dry mouth is every bit as annoying.  It can make your tongue feel like an abandoned flip-flop in the Sahara Desert.  No matter how much you swallow or how much water (or whisky or wine) you drink, you’re still parched.  This makes your mouth and tongue feel horrible and your lips dry and cracked.  It also makes it difficult to swallow.  I constantly feel the need to clear my throat or cough up a mucousy fur ball.  At times I sound like a retching dog who’s been eating too much grass. Yes, pleasant I know.

Another frustrating knock-on effect from needing to drink all this extra water is the constant need to wee.  It’s a standing joke in our family that I will need to go at least twice before I leave the house and then within seconds of the engine being switched off.  Lazy muscles after popping out two children don’t help.  I’m probably just one violent coughing fit off using Tena Lady.

You can read more here about the symptom of Sjögren’s Syndrome, who gets it, how it’s diagnosed and how it can be treated.

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World Lupus Day 2016

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A dog walk too far

At the start of the week, I looked in the mirror and realised my total lack of exercise is starting to play havoc with my waistline.  Too many comfort calories and that muffin top is threatening to develop into a brioche.  And that, if left unchecked, could very well morph into a farmer’s loaf.

Time to get up and moving, I told myself.  On Monday I wheeled out my bike, brushed off the cobwebs and went out for a very gentle cycle.  All good so far;  I was still standing, all limbs working and one whole biscuit’s worth of calories burned off.

So the next day I woke up brimming with good intentions.  And then made the fatal mistake of thinking I could do more than I can.  Silly me, why do I keep letting my wishful thinking hijack my common sense.

I did the school run by foot and decided to live dangerously: I took the long way home. I’m only talking about a few extra roads and a quick detour via the park, but oh boy, what a difference an extra half an hour can make.

By the time I’d carried a happy, wet pooch through the house, I was fit for absolutely nothing. Yawning, exhausted and zonked out on the sofa.  I never learn, as my husband was quick to remind me.  ‘I only suggested you walk to school and then come straight home’, he pointed out, ‘not traipse around the entire village’.

Clearly, it was a moment of pure madness and one I’ve paid the price for all week. Argh. It makes me want to jump up and down and scream that I can’t do something as basic as walk the dog without knocking my body out.  All that effort to work off one sodding biscuit on Monday and I’ve probably eaten an entire packet since.

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I’m not lazy, I have Lupus

One of the more annoying things that people can say to me is ‘wouldn’t you feel much better if you exercised more?’  To me, that sounds an awful lot like ‘heave your untoned arse off the sofa and stop lazing around every day’.  But maybe I’m just being paranoid?!

Hmmmmm, exercise they say?  Now that you mention it, it does seem like the most obvious of cures.

Silly, silly me, how could I – or my doctors, come to think of it – not have thought of this sooner.  Let me flush all these unnecessary prescription pills down the loo, skip to the gym and body pump this chronic disease right out of my system.  Perhaps I could jump up and down, take a run, climb a rock, go for a swim or crunch my body into submission.  Who knows, once I’ve zumba-ed my way back to perfect health, maybe I’ll be able to walk on water, or, better still, turn H20 into wine!

I nod and smile through gritted teeth. Yes, I agree, it would definitely be good to do more regular exercise, but sadly that’s not always an option for me.  Most well-meaning and tactful people stop dishing out advice at this point.  But there’s always one. The one that never knows when to reel it in and zip it up. These people I could happily slap.

But why not, they want to know.  Exercise is ever so important they say.
Hold the press, groundbreaking theories being formed here:  Had I considered, perhaps, that it is my very lack of exercise that’s making me ill?

Had you considered, perhaps, that you’re getting on my very last nerve?

Have I tried a particular type of yoga? they enquire.  It’s called the Born Again Dying Swan and it’s all the rage.  Originates from the monasteries of ancient Tibet, apparently;  best-practised butt naked and balanced on a 2-foot pole in temperatures of exactly 89.9 degrees. Cures cancer and better than botox, so their best friend’s mother’s nutritionist said.

OK, enough now. I know in your head you’re trying to mean well, but out here in my world, you’re not.  Please just SHUT UP.   Why? Because in this instance you have absolutely no clue what you’re talking about.

Clearly, I know that exercise is good for you; it stops you getting fat and keeps you healthy.  Yes, I also know it can make you feel energetic, pumped up and happy to be alive.  But here’s the bit you don’t get.  For some people (that would be me) it can also wipe you out and leave you in a whole heap of pain.  A gentle walk or an overly ambitious bout on a yoga mat can cause joints to swell, nerve ending to burn and limbs to feel like they’ve been shrouded in concrete.  It can make my arms hurt and my bones ache.  And as for those incredible little endorphins that exercise releases? Believe me, when I tell you they’re simply no match for out-and-out, dog-tired exhaustion.

So yes, exercise is good and healthy and fun.  And yes, moving faster than a sloth on a regular basis would no doubt do wonders for my pathetic muscle mass and wobbly bits. But here’s the issue I have: there is simply no way of telling how much is too little or too much.  An extra 10 minutes in the wrong direction with the dog can be my undoing; there are no warning signs and there’s no going back.

So please people, quit with your well-meaning advice and consider this. Living an often sedentary life is most certainly not a life choice.  It is frustrating, boring and incredibly depressing.  Every single day I miss what my body used to be able to do and it often makes me cry.  In the good old days, I used to spin, swim, gym and downward dog with the best of them. Hell, I even kickboxed my way around the mat once upon a time.

So believe me (and every other medically induced couch potato) when I say nothing gets our backs up more than being told exercise will ‘make us better’.  No one is more clued up on possible treatments and ‘miracle cures’ than us, and if it were as simple as that, don’t you think we’d be out there pumping, squatting and peddling along with the best of them.

A little bit of sympathy and understanding, on the other hand, would go along way to making us feel better.  Ditto for flowers, chocolates, and dropping by for a cup of tea when we’re feeling low!

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Good doctors are an endangered species

From personal experience, I know just how long it can take to find a really good doctor. When I say really good, I mean one who’ll not only listen, pass the tissues and nod sympathetically in all the right places but also act on what you say and actually get something done.

Whether you’re at the local surgery or in presence of the lesser-spotted and rarely sighted rheumatologist, I find that half the time, these medically trained mortals are an impatient bunch. They sit, stopwatch in hand waiting to shoo you back out the door as soon as your allocated time slot is up.

As it is, I aways feel like a raving hypochondriac, as I hurriedly work through my pre-prepared lengthy list of ‘new’ symptoms.  During most appointments, no matter how fast I talk, I barely manage to get past the ‘Top 3 things I absolutely need to ask’. My handbag is now full of crumpled up old scraps of paper covered in unanswered questions and angry-looking doodles.

I often walk away from appointments feeling irritated and let down.  I rarely feel any more clued up (on why I feel so shit) than before I went in.  Many times I’ve been in floods of tears by the time I’ve reached the car; on one embarrassing occasion, I didn’t even make it to the parking ticket machine before the snivelling began.

I had assumed that once my Lupus had been diagnosed, the whole doctor situation would improve.  Back then I still had the optimism of course.

My first rheumatologist was absolutely useless.  Perfectly sweet and highly qualified she may well have been, but with all the personality of a bag of limp lettuce.  More worryingly, it seemed to me that she had little idea what to do regarding my treatment, and no obvious intentions of coming up with a plan anytime soon.

Every six months I’d return to her office and list the same issues and complaints; problems which were, unsurprisingly, getting worse with every visit.  Her response was always the same: she’d mutter and mumble about my bloods and tell me she ‘understood’. Now, ‘nicey-nicey’ isn’t really my bag at the best of times; certainly not when I’m looking for some decisive medical intervention.

The extent of her ‘treatment’ was recommending that I ‘stretch out’ the crippling pain in my hips when it got too bad.  Give me strength.  I didn’t wait for over 2 hours on a suspiciously sticky waiting room chair (not to mention many years just to get the appointment) to be told that.  If I could have fled the scene of the crime undetected, I would have throttled the useless woman then and there.  Luckily for her, I calculated that with my pronounced limp, I’d have likely been apprehended before I even made it as far as the nurses’ station.

When the stretching didn’t fix the pain (no medical degree needed to realise that one, Sherlock) she sent me off for a six-week ‘getting back on your feet’ physiotherapy course at the local old people’s home hospital. Dear god in heaven, what a truly hideous experience that turned out to be.  I was easily the youngest in the room by at least 40 years, yet still the only one unable to lift my legs up off the mat on command.  Pain and humiliation in one.

It was only when I mentioned to my Lupus nurse that I wasn’t exactly ‘enamoured’ with my allocated rheumatologist, that she told me I could request a transfer via my GP.  I hadn’t even known that was an option.  She recommended I try a different, slightly more pro-active doctor in the department i.e. one with less small talk and hand wringing and more ‘jump to it’ action.

A couple of months later I rocked up to see my new rheumatologist.  He promptly sent me off for an MRI, which in turn confirmed I had massively inflamed and swollen hip joints and a spattering of arthritis to boot.  Clearly, no amount of gentle stretching or cycle classes for the over seventies was going to sort that out.

A few short weeks later I was sent for a cortisone injection into each hip; a week after that I was practically pain-free and could finally walk again.  Halla-bloody-lullah.

That’s not to say the current rheumatologist is perfect of course, far from it really.  To this day I have still to get through my list.  And I often walk out frustrated and on the verge of tears.  But I guess the important thing I have to remember is that at least I can walk out now.  If I’d stuck with my first rheumatologist I’d probably still be ‘stretching it out’.

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When diagnoses are a bit like buses

My journey to diagnosis was a long and frustrating slog, to say the least. Partly because it’s a very difficult thing to diagnose and partly because no one would bloody listen.  I often felt tempted to just give up trying to find out what was wrong. On a regular basis, I lost all faith in the medical profession.  Lupus Bus

Bus stop sign Looking back I now know that my Lupus kicked in years ago. The first sign was the terrible pains in my legs and hips;  some days they got so bad I could hardly stand up.  I went to our local doctor in Australia (where we were living at the time) but he didn’t have a clue.  He sent me off for x-rays but nothing showed up.  He didn’t really bother to investigate beyond that, even though the pain continued.

Eventually, I found myself a chiropractor, who told me I had one leg shorter than the other. Diagnosis completed, as far as she was concerned.  I was then sent to a podiatrist who made me a heel lift to wear in all my shoes.

What a proud Forest Gump moment that turned out to be.

Of course, no one wears shoes in Australia, they wear thongs (that’s flip-flops to you and me), so it doesn’t take a genius to work out you can’t wear a heel lift on a Croc. So painful hips, one leg longer than the other and then limited to trainers in the 40-degree heat.  Oh, how I laughed.

Of course, the heel lift did nothing to help the underlying issue that was Lupus.  Funny that seeing as being a bit stumpy in the limb department has absolutely no bearing on one’s immune system.

Adding to the drama further I then suffered a very miserable 3-month bout of vertigo. The full on type where the world spins around you, not the fear heights.  Heel lifts no longer become such a concern as I could barely stand up without falling down.

This was later followed by a night where breathing became tricky and I lost feeling in both my legs.  An ambulance was called and I was whisked off to the local A&E.  The doctors were once again clueless. They tried to put it down to me overexerting myself at the time. The fact that at the time it happened I was calming sitting down, eating a yogurt and watching Greys Anatomy.  So nothing ever came of that episode either, except of course an $800 bill in the post for the pleasure of my ambulance ride.  Australia sure isn’t the cheapest place in the world to be sick.

Fast forward a year and I’m back in the UK.  Out of nowhere my fingers suddenly started to go numb at the drop of a hat.  One minute totally normally, the next I’d have a full set of bloodless digits; they looked like the hands of a corpse that’s been washed up after several weeks at sea.  Not pleasant at all, but BINGO, suddenly I had my first diagnosis: Raynaud’s phenomenon.

Dodgy hips, random pains and unexplained bouts of tiredness continued, and then fast forward another year and my eyes were now dry and burning and my mouth felt like a forgotten flip-flop in the Sahara Desert.  BINGO again. It’s Diagnosis Number 2:  Sjögren’s Syndrome.  Bit like buses these damn diagnoses.

I honestly can’t even remember how, why or when they reached my final diagnosis of SLE.  For some reason, my GP failed to tell me she was even testing my blood for other things.  So I suppose it stands to reason that she would also forget to tell me what they had found out.

The first I knew of it was during a nurses appointment at the hospital.  Just a simple check up I thought, after having my numb, wrinkled fingers x-rayed and my dry, itchy eyes scanned.

So why am I seeing you today? I enquired of the lovely lady in blue.
I’m your Lupus care nurse, she said.
Why do I need one of those? (sometimes it takes a while for the penny to drop)
Because you were diagnosed with Lupus a month ago, she said.
Oh. Right. Good to know. 

Queue much crying by the time I’d reached the car.

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Day 60: it was all going so well

The last five weeks have all been a bit up and down;  some days I’ve felt great and other weeks have been a total disaster.  The last couple of weeks have been particularly bad, however, but until today I just couldn’t work out why.  I knew I hadn’t been ‘pushing’ myself (no base jumping or tiger wrestling) yet the brain fog well and truly descended upon me and I’ve had the energy levels of a snail.

The reason for this became clear, following my third blood test on Monday.  I had a call this morning to say my GP needed to speak to me about my results. I admit I freaked out, just a little.  In my experience, doctors rarely call you at home to tell you anything you’d actually want to hear.  The last such home call I received was from a different doctor, telling me I had to see a neurologist immediately as my life was in danger.  But that’s a whole other story.

A flurry of phone calls ensued between my GP, the rheumatology nurses, the rheumatologist and myself.  Apparently, my white cell count and my neutrophils were crazy low, and this put me at a much greater risk of infection.  I swear I could feel my chest tightening and a tickle in my throat as soon as she told me.

If you so much as cough or sneeze or feel slightly hot or unwell you must come into the surgery straight away, my GP warned me.  But I’ll never get an appointment, I pointed out. Consider this a fast past to get in whenever you need, she assured me, just say you have to be seen as a matter of urgency.

Hmmm, look forward to trying that one out on the bull dogs receptionists who man the surgery phones.  They seem to regard every enquiry for a same-day appointment as a completely unreasonable and unnecessary request.  I once had to throw myself, weeping and wailing across the counter top before they reluctantly ‘allowed’ me to see a doctor.

To cut a long story short, my azathioprine dosage has now been cut by 50mg to see if this will bring my bloods in line.  I’m also back to vetting all my visiting friends in case they or their offspring are infectious or sick.  My melodramatic self is now picturing having to live in a vacuum packed bubble for the rest of my life.  Yes I know, I’ve already told myself to get a grip on reality and calm down.

Rewind to Day 20.

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