Oh, give me strength

Forgive me while I scream.

Back in August, I clocked in at the hospital for a check up with my Lupus nurse.  It was one of those ‘we understand, we care’ sort of appointments.  I told her how let down I felt by those overseeing my healthcare.  I mentioned I was concerned about my periodic bouts of doom and gloom.  I said I was worried the Azathioprine might not be doing its job.

Fear not, she reassured me, I’ll book you an appointment for 3 months time, that way I can double-check you’re ok and see if the meds are on track. Offer accepted and appreciated.

Then yesterday I received two letters in the mail.  The first informed me that my appointment in November has now been cancelled; they hoped this wouldn’t cause me too much of an inconvenience.  The second letter said my appointment had now been re-booked.  For 8th August 2017.

2000 and bleeding 17.  I admit I did a double-take on the year.  Then I swore.

How reassuring that one minute they deem it necessary to check I’m not wallowing in depression or taking ineffective meds, then the next I’m put on hold for another 10 months.

I’d like to say I was shocked to the core, but I’m not.

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Dr. Pitbull takes charge

Recently something I never thought possible happened: I stumbled upon the very best GP in the world.  Who knew such a doctor even existed?  I’d certainly given up all hope of hunting down such a rare and mystical beast.  Up until this point, I’d have probably given better odds to coming down one morning and finding a unicorn eating breakfast at my kitchen table.

It was a friendly, blood-taking nurse who originally pointed me in his direction.  I’d been having a moan about the less than impressive medical care (namely the great Azathioprine fiasco) I’d experienced recently, saying I felt completely let down.

I know just the doctor for you,” this nurse told me.  “You’ll like this one, I promise.  He really cares and he’ll definitely fight your corner; he’s like a pit bull.

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It all sounded too good to be true, I thought, but worth I punt, so I made an appointment to see him. A month later (yes, it can sometimes take that long to get an appointment) I rocked up to the surgery.

Well, blow me down with a feather if that nurse wasn’t right.

He didn’t try to rush me out of my seat or make me feel like an inconvenient hypochondriac.  He asked questions; he listened; he genuinely cared. And then, just when I thought he couldn’t have got any better, he said something that I’ve often thought but would have never dared say out loud, and certainly not to a doctor.

Lupus is a really terrible thing to have,” he agreed.  “If it were cancer, then everyone would know you were sick; they’d make allowances and care a little more.  But I image when it’s a disease like this that no one can see, it must be very frustrating to have it ignored or not taken seriously.”

Well, didn’t Dr. Pitbull hit that one square on the head.  It definitely goes down as the most empathetic thing a doctor has ever uttered in my presence.  And then it got better still.

You don’t have to settle for inadequate treatment, you know,” he continued. “You do have other options“.  This was news to me.  “Would you like me to refer you to the Lupus Unit at Guy’s Hospital in London? ” he asked.

Can you even do that? ” I said, “No other doctor has ever mentioned the place, let alone offered to send me there.

Yes, of course I can, ” Dr. Pitbull said.

This all happened a month or so ago, and, if I’m honest, I’d filed our conversation to the back of my mind, along with all the other pipe dreams that are unlikely to ever happen.  You know the ones:  full health recovery, Euro lottery win, shifting the muffin top – that sort of thing.
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And then, out of the blue, an appointment alert popped up on my phone.  Dear god, he’s only gone and done it.  On 10th November I’m getting my foot through the door of the largest Lupus unit in Europe – a place filled with doctors who treat nothing but Lupus every single day.

As if that wasn’t enough of a reason to worship at the feet of my new, wonder GP, in the months since I transferred over to him, he’s also proved to be everything the nurse prophesied and more.  As promised, he emails me the minute my bloods come in to tell me the results and check I’m OK.  He then replies within minutes of my reply, regardless of whether it’s his day off or rather too late at night.

Yesterday, (a Saturday, no less) he took doctor care to a whole new level.  When replying to his email, I said I’d felt terrible all week and couldn’t sleep.  Straight away he came back and asked if I’d like to see him next week.  That would be great, I replied, but I’ll never get an appointment with you.

Low and behold, a few minutes later, another appointment alert for this Thursday popped up on my phone: he’d only gone and sorted it out himself.

Give the man an early sainthood.  He’s single-handedly proved that some doctors are worth their weight in diamonds.  And that, with the right people in place, there’s still hope for our NHS yet!

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My Azathioprine Adventures

azathioprine-falling-sick-and-always-tired-copyIt’s been a while since I threw myself down the Azathioprine rabbit hole, so perhaps it’s time for a quick recap of the ‘fall’ so far.

In a nutshell: finally got a prescription, acted like an ostrich, started meds, felt like shit, got used to meds, bloods went loopy, got taken off meds, 3 weeks of cold turkey, back on meds.  Makes my head spin just thinking about it.  Makes my head spin just thinking about it.

Follow my journey into a Lupus-filled sort of Wonderland:

 

Day 135: hey ho, back to Square One we go

The last few weeks have been quite an unpleasant adventure; a throwback to the beginning of the year.  From the moment I retrieved my first Azathioprine pill from the ‘useless medication’ basket on top of the fridge, I felt rank.  I’m talking room-spinning, head-pounding, limb-aching, swallow down the vomit sort of rank. A bit like morning sickness come to think of it, with a touch of flu thrown in.

I had been hoping that it wouldn’t be so bad the second time around. Clearly, I was wrong.  If anything, those lovely little chemicals seemed to get to work even quicker than before.  By the first night, I was woozy and spaced out, by the second day my head felt freakishly large and I couldn’t handle bright lights or noise.  By the third day I had ground to a screeching halt; I was as good as useless.  I spent the entire day on the sofa, gazing at the cracks on the ceiling and feeling bleak.

Like before, it felt as though I had ice water running through my veins and a pair of car battery chargers clamped to my fingers, releasing wave upon wave of electric shocks through my limbs. My bones felt crushed and my chest felt constricted.

When I did make it off the sofa, I didn’t so much walk as drag my carcass around the house. Going upstairs was a painful exercise, both painfully slow to watch and painfully sore to do.  Much like a centenarian climbing a very steep hill, I progressed one very tentative step at a time, pulling myself up by the handrail.  It was a pitiful and tragic experience.Laying down

By the end of the first week back on the tablets I was gradually starting to adjust. Still absolutely shattered of course (is there any other way to be?) but no longer knocking on death’s door.  By the end of the second week I was turning a corner.One more restful weekend and I reckon I’d have been feeling pretty sprightly by now, as I headed into the third week.

But then I went shopping.  Or should I say, then I went on an 8-hour shopping extravaganza. It was great to be back out of the house and acting ‘normal’, but what was I thinking. Fun it may well have been; sensible or overly restful it was certainly not.

Thus the third week dawned and lo and behold, I felt like I’d been hit with a sack load of wet cement.  Back to Square One, I shuffled, feeling sheepish, silly and incredibly sore.  Self-sabotaging mission: complete.

Rewind to Day 96.

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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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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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