Day 274: hibernation here we come

November 21, 2016 ~ Rachel ~ 1 Comment

Blimey, I’ve just counted and it’s 139 days since the last ‘Azathioprine update’. That’s 4 blood tests, 4 lots of results, some random appointments and a whole lot of readjusting since I went back to ‘Square One’ in July.

On the whole, it hasn’t been too terrible and there’s still no green, scaling skin, newly grown limbs or unusual superpowers to report. The worst of the joint pain is still being held at bay (hurrah) and I’m definitely a hell of a lot more mobile than I was this time last year, or the one before that, or the one before that…

Fatigue-wise, it’s all much of a muchness, but that was always going to be the case. There is NO drug, quick fix or cure for chronic ~~slothitus~~ fatigue, more’s the pity. What I have learnt, or rather, what I keep learning, but never seem remember, is this: I can manage day-to-day as long as I do absolutely nothing.

Ok, that sounds a bit bleak, I admit. What I mean is, as long as I don’t try to push myself, be overly ambitious, think I’m more capable than I am or do anything resembling reckless, I can, for the most part, get stuff done. That said, I still have very regular relapses when energy levels are at zero, zip, zilch and nada.

The approaching winter is, however, definitely throwing up a few curve balls. During the last 6 weeks or so I’ve bounced from one thing to another, never quite having the chance to come up for air or recover in between. Is this down to the Azathioprine? I’m not entirely sure.

Having put the infection and headache behind me, I promptly came down with the flu. Not that I actually realised it was the flu, until I was already halfway through the whole aches, pains, coughing and wretched snivelling. That, in itself, just goes to show how many horrible symptoms someone with Lupus will pass off as ‘normal’ before they even entertain the idea that something else might actually be wrong.

Just for the record, I did line up with all the OAPs in the village for my flu jab this year, but clearly, that wasn’t worth the nasty pain in the arm it gave me. Either the head honcho at the Influenza Immunisation Programme picked the wrong strain to target this year or my body plans on surrendering to every single virus comes along.

With a cough still lingering a couple of weeks later, I’m now wondering just how well my now suppressed immune system is going to fare this winter. I’m practically housebound as it is, and when I do go out, the cold weather shocks my body into one sort of head-to-toe meltdown after another.

So I choose to stay inside, dress in fleece onesies and whack up the thermostat. A perfect solution, you might think, except for the fact the central heating seems to bring on a whole host of other problems: even drier eyes, terrible headaches, sniffs and sneezes, additional tiredness, wooziness and increased brain fog. But turn off the heating and the Raynaud’s and general miserableness kicks in.

I think that’s what you call a lose-lose situation.

So, what pray is the answer? Rethink my choice of drugs? Completely avoid civilisation? Wear a full germ resistant biohazard suit? Or perhaps I should just do like a hedgehog, disappear under a pile of leaves and hibernate till Spring?

Either way, I am slightly concerned that by the time the trees have regrown their leaves in 2017 I’m going to be translucent in shade, socially inept and adding muscular dystrophy to the list of woes.

Oh, give me strength

October 19, 2016October 18, 2016 ~ Rachel ~ Leave a comment

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.

Note to self:

October 18, 2016October 20, 2016 ~ Rachel ~ Leave a comment

You stupid girl. The next time you feel like this crap, please drag your head out from under the cushions and pay attention to the following symptoms:

When your lungs feel starved of o2 and every breath hurts – it should not be ignored. When it feels as if a boa constrictor is wrapped around your chest, crushing your ribs – it should not be ignored.

When you wheeze like a smoker for no good reason – it should not be ignored. When your body feels extra depleted, done in and defeated – it should not be ignored. When your skin turns an even sicklier shade of grey – it should not be ignored. When you’re hacking up mucus the colour and consistency of gloopy Ambrosia custard – it should not be ignored.

You silly, silly girl. All these symptoms are not ‘normal’, even in your messed up world. Quelle surprise, you have a lung infection. And that, my dear, will not quietly disappear without a helping hand, no matter how deep into denial you dive.

So now you can add another eight little steroid tablets to your breakfast menu and wait to see if they do the job. What’s that, you moan? 14 tablets with your granola is just too much to bear? Perhaps you’ll remember that next time…

Look on the bright side at least. Best case scenario: you’ll perk up and soon be back to your usual Lupusy self. Worst case scenario: come the weekend you’ll have bulging muscles and be ready join the ladies Russian shot put team.* A result either way, it has to be said.

* I jest, of course, these steroids don’t turn you into a super athlete overnight.

Dr. Pitbull takes charge

October 9, 2016 ~ Rachel ~ 3 Comments

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.”

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.

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!

My Azathioprine Adventures

October 8, 2016November 21, 2016 ~ Rachel ~ 2 Comments

It’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:

What is chronic pain?

September 27, 2016October 31, 2018 ~ Rachel ~ Leave a comment

I’ve already covered what chronic pain is, so now to talk about what chronic pain feels like. Of course, everyone has very different pain issues to deal with, but chances are the overall experience is equally life-changing and depressingly miserable for all involved.

When it comes to that ‘Ouch to the Off The Chart’ pain spectrum I was talking about, for me, personally, it’s often at the upper end of the chart.

When I just had the Lupus to contend with the pain was easier to control, but now Fibromyalgia has joined the mix, my pain is now almost constantly ‘on the move’. A bit like the London Underground, it runs up and down each of my limbs, careering from fingertips to toes and back again. It rarely stays still for very long, just a brief pit stop in each area (giving it time to throb, burn, and ache) and then it’s changing direction and racing off to the next destination. Migratory pain, the doctors call it; makes me think of a herd of wildebeest stampeding across the dusty African plains.

As well as being nippy on its feet, this pain of mine is also rather brutal. It often feels as though someone has taken a mallet to me, and is smashing, shattering and crushing every bone along the way.

It’s not that dissimilar to when you whack your funny bone, and then have to stand completely still while the pain reverberates through your body.

As if feeling like a clubbed baby seal wasn’t stressful enough, there’s also a rather disturbing sensation of electricity and ice-cold water flowing through my veins. Clearly, that’s slightly freaky and unnerving, to say the least. We were all taught in science lessons that electricity and water really aren’t the best of friends. I’m not 100% sure what causes this arctic electric shock of mine. Something to do with the nerves, I think.

Some days the sheer intensity of all this combined pain is so severe it makes me feel nauseous. Just like morning sickness, it comes in waves out of the blue and makes me gag. The pain also makes me weep and wail. I’ve sat in the shower and sobbed, laid in bed and howled, and screamed while driving my car. Music was blaring and the windows were up at the time, so luckily no other road users were harmed or alarmed.

This chronic pain of mine has been going on for about eight years now – with the last six being the worst. Initially, it resided in my hips and legs; my bones would burn and ache every single day. Walking was difficult as my hips would seize up, even when shuffling along the road at snail’s pace. A particular low point for me was being overtaken by an 80 something-year-old man, who was out taking a leisurely Sunday afternoon stroll. With his cane.

There were days my joints hurt so much I couldn’t lift each leg to climb the stairs. I would resort to crawling up, step by step on my hands and knees. Sleeping also proved tricky, as laying on either hip was proving agony. I soon learnt to snooze on my back and keep a large stash of painkillers by the bed. Cortisone injections into each hip proved the only treatment that made a difference, but these were given out sparingly by the doctor and they only lasted 3 months tops.

Then a year or so ago I had a slight lull in the pain. Oh, the joys, what a difference that made – for about a week. Then, fresh from its mini-break, the pain returned and spread to my arms and hands too. Imagine my delight. Walking like an octogenarian is one thing, not being able to lift, pull or open a door is something entirely different.

It was at this stage, and after much moaning and groaning to my rheumatologist, that he agreed to try me on Aazathioprine. After the first couple of weeks of pills, the joint pain almost vanished straight away. Result! A few months when I was (wrongly) told to stop taking them, the pain came straight back. And with a vengeance, I might add. When I started back on Azathioprine for the second time it wasn’t quite so quick to take effect. I panicked that it wasn’t going to work. After a brief reminder of how good life without severe pain really was, I didn’t want to settle for anything less.

12 weeks on and, for the most part, the drugs seems to be doing their thing. As long as, that is, I don’t ‘overdo it’ or forget to get enough rest.

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

July 5, 2016September 29, 2016 ~ Rachel ~ Leave a comment

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.

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.

Jeez, make up your mind already.

June 18, 2016September 29, 2016 ~ Rachel ~ Leave a comment

Today I received a letter that made my eyebrows shoot up and my hackles bristle. Three weeks after being told (via a nurse on my voicemail) to come off my Azathioprine, my rheumatologist now tells me (via a letter to my GP) that I didn’t actually need to stop them at all. Please ‘start them up’ again, the letter said.

Just like that, as if it’s as easy as popping Smarties. Give me strength. Every time I tell myself that those in charge of my health couldn’t cock it up anymore, they seem to find new ways to surpass themselves.

In the letter, there was no reference to the fact I shouldn’t even have been told to stop taking them; or that the nurses who told me to do so clearly didn’t get their instructions from him: the man in charge. There was no acknowledgement that if my GP hadn’t bothered to write to him in the first place, he’d have been unaware I was even off the drug. Rather alarming, that.

There were certainly no apologies for unnecessarily messing around with my treatment. And of course, no thought of the fact that ‘starting up’ this drug is a horrible, painful process that takes many months of adjustment and makes you feel like a big pile of cold sick. Or, that having to come off this drug for no apparent reason has resulted in another equally unpleasant and painful few weeks.

No, none of that. Just a ‘please tell her to start it again’. Now, what was I saying about needing that Empathy class again?

To make it all that little bit worse, it took them an age to even let me know. For some unknown reason, it seems the hospital department can manage to pick up a phone and ring me when passing on the wrong message, yet when it comes to putting it right, that has to be done via snail mail. And by second class, it would appear.

A whole bloody week it took them to dictate, type up and post that letter; then another three days till it landed on my doormat. Where’s the logic in that? A simple 30-second phone call would have gotten me back to where I needed to be an awful lot faster, and spared me that extra seven days of cold turkey blues.

So here we go again. First I had to psych myself up for starting the Azathioprine, then I had to get used to feeling like death. As soon as I was feeling better, I had to deal with coming off them again – and go back to feeling crap. Now, I’m back at square one and preparing to start all over again.

Am I feeling amused? In a word, no.

Day 96: well, that’s that then

May 27, 2016September 29, 2016 ~ Rachel ~ 1 Comment

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 Months, Day 1, Day 3, Day 7, Day 10, Day 20, Day 60 and Day 94.

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

May 25, 2016September 29, 2016 ~ Rachel ~ Leave a comment

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.