Grumbling Stomach v Patient Care

November 10, 2018 ~ Rachel ~ 4 Comments

Last week I had my check-up with the rheumatologist – an annual highlight of my social calendar, alongside sorting the car’s MOT and having a smear. As a rule, these appointments generally consist of 1 part disappointment: 1 part frustration: 2 parts total despondency. They go something like this:

I arrive at the hospital with a well-prepared list of questions – I’m feeling positive, in control and determined to be heard. I queue to get into the carpark, hand over a fresh pot of wee, get weighed and then wait. And wait. And wait. I eventually get summoned.

I sit, he asks ‘So how do you feel?’ and I answer ‘Terrible‘ (that’s always a given). He flicks his eyes across my notes and promptly declares that my bloods are looking good. Less than two minutes after entering the room I am leaving it. All my well-prepared questions are unasked and unanswered, my positivity is completely squashed and my ‘in control’ voice has been gagged and muted. I scuttle off to the ticket machine, often in tears and always fuming – at him for making me feel so unimportant, at my body for being so useless and at myself for not having the balls to speak up more.

Why consultants (particularly male ones) seem to have the ability to render me a pathetic, jibbering wreck who actually feels guilty for taking up their time, is a complete mystery to me. I think perhaps it’s the overpowering God complex they use to hypnotise patients with.

I wonder, do other people also feel ‘sshhhed’ into submission by all-knowing consultants, or is it just me? And what about male patients? Do they let themselves get steamrollered too? Answers on a postcard – or in the comments below!

Anyway, where was I? After a lengthy queue at the machine, I find out that once again I’m over the allocated ‘free’ parking time by 0.2 of a second, despite my appointment having only last two minutes. I also realise I don’t have enough coins to pay. So I leave the queue and join another, having to buy myself a muffin from the overpriced cafe just so I can get some change.

The muffin is invariably dry and totally inedible; it’s the final insult to an already depressing trip. The muffin ends up in the carpark bin, I promptly scrape the hubcap against the pavement while trying to negotiate the hairpin bend of the exit and then, low and behold, I see that the ticketing barrier is permanently up.

Like seriously? Is there anything more annoying than being made to pay for something that you don’t even have to?

On this last trip, for the first time, I decided to take my husband with me for back up. I thought perhaps this might counteract all that testosterone swirling around the room. I also wanted him to experience Dr Complete Lack of Bedside Manner for himself.

Sadly, on this appointment, it was not to be.

Being the last patient of the morning shift, Dr CLOBM (as I shall now refer to him) had decided to skip his customary two minutes with me and head off early. The first I was aware of this was when a registrar called me in and said he’d be filling in for Dr CLOBM as he’d been called away for a ‘meeting’. Had he heck, a meeting with his stomach perhaps. My husband had already clocked him in the corridor, heading for the exit and telling his medical student to go on and get them a table for lunch.

I know! What a bloody liberty! The man only has to see me once a year, couldn’t he have overcome his hunger pangs for the couple of minutes that he normally allows me? After all, there’s plenty of other things I’d also like to be doing with my precious energy rather than queueing up, giving wee, getting weighed and waiting.

As it turned out, he and his grumbling stomach had done me an almighty favour. As the fill-in registrar had not yet reached the lofty pay grade that causes ears to stop working, he actually took the time to listen to me and answer my questions. Even more of a revelation: he asked about the pain I’m in and, for the very first time, properly acknowledged my fibromyalgia. Halle-bloody-lujah.

He examined my hands (never happened before) and tested the fibromyalgia pressure points on my body (certainly never happened before; didn’t even know they were there). He also explained why my memory is currently shot to shit, and how and why my body wasn’t able to deal with the pain. He then referred me to the pain clinic.

Thank god Dr CLOBM had considered himself and his plate of foie gras and chips more important than seeing me that day. For the first time, I left the hospital feeling vaguely upbeat: not because I think I’m going to be ‘cured’ with revolutionary tips on pain management, but because I’d finally been allowed to have a voice.

When you live in a world ruled by chronic illness, where doctors control your drugs, your future and your fate, being ‘heard’ is a monumental achievement – as much as an achievement as when Armstrong went for a stroll on the moon.

So that’s one small step for (chronically ill) me, one giant leap for womankind.

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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.

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!

And just one more thing…

May 30, 2016September 29, 2016 ~ Rachel ~ Leave a comment

I promise this is not a doctor bashing blog (I know the majority do great things every day), but I’m feeling ever so slightly grumpy after recent events.

So here’s the thing. As a patient, I just wish that sometimes doctors would be a little more… what’s the word I’m looking for… empathetic.

I can count on one hand the number of doctors I’ve seen who seem to care. Genuinely care I mean, not just asking what they can do to help. Surely ‘caring’ should be a prerequisite for getting accepted to med school, and attending an Empathy class should be compulsory. There’s bound to be a half an hour slot right between Dissection 101 and the What’s the Longest You Can Keep Your Patient Waiting seminar. It seems to me that a number of other important classes have already been cut from the training curriculum; The Importance of A Good Bed Side Manner and Explain, Don’t Patronise are two that immediately spring to mind.

Hey, if ’empathy’ is too big an ask, I’d be happy to scale back all my expectations and just settle with some good old-fashioned listening. This very basic skill only requires the ownership of two working ears, so no additional NHS funding will be necessary.

Yes, yes, I do of course understand that they’re a very busy bunch up at my local rheumatology department, and that it’s no doubt overrun with 1000’s of other people in exactly the same boat as me – all gnashing their teeth in exasperation and wanting a little more support. I am also well aware that there’s bugger all that can be done to cure Lupus, and most of the treatments are always going to be hit and miss. It’s all about the ‘management’.

But here’s the thing: (I might as well speak on behalf of all the 1000’s of fed up, teeth gnashers out there) we would like to point out that we’re more than just an NHS hospital number. We’re also more than a set of blood results or a bi-annual appointment that needs to be checked off the consultants to-do list. Some of us are getting mighty fed up with being fobbed off, patronised, pacified and then packed off till the next time, with absolutely no sign of any improvements or progress whatsoever.

Ok, grumpy rant over for the day. I’ll now hobble off my soap box and go take my meds like the good little patient that I am.

Good doctors are an endangered species

April 26, 2016September 29, 2016 ~ Rachel ~ Leave a comment

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’.

Day 1: down the rabbit hole

February 22, 2016September 29, 2016 ~ Rachel ~ Leave a comment

Ok, enough with the faffing. My level of indecision has reached such ridiculous heights it’s threatening to bring on my vertigo. I’ve finally decided to grow a pair, take the damn pills and sit back and see. Just how bad can it be?

A couple of things helped me make up my mind. First up was the feeling that I was being selfish. If Azathioprine offered a shot at living a more ‘normal’ life, then I certainly owed it to my children to give it a go. This could be my chance to stay awake for what’s left of their childhood before every one of their memories involves a sleeping mound under the blanket. It’s time to think and act in the present. Any worrying health problems that may lurk in my future (or my overactive imagination) will just have to be dealt with further down the line.

Secondly, I asked the advice of those ‘in the know’. No, not doctors, those with more of a clue. Medical professionals may be trained and have letters after their names, but in all seriousness, who’s in a better position to tell you how it is: someone who dishes out the toxic tablets but doesn’t ingest them or the poor sods who already take them.

With this in mind, I sent out a plea for advice on a Facebook Lupus page. Straightaway I was inundated with positive replies, encouragement, and reassuring advice. There was just the one negative response, citing liver damage, so I quickly skimmed over that before my paranoia had a chance to take hold.

‘Take it, do it’ was one person’s advice. So this morning I did.

I felt a little bit like Neo inThe Matrix. If I take the green pill, I get to stay in Wonderland and see just how deep this rabbit hole goes. Here goes nothing.

I’m not quite sure what I was expecting to happen after I swallowed it. A drum roll perhaps? Or maybe for my skin to turn green and scaly and a forked tail to suddenly grow? After months of worry and stress, it all felt like something of an anticlimax.

Perhaps the biggest let down was finding out that despite disappearing down the rabbit hole, I’m still unable to move in slow motion, stop bullets mid-air or walk upside down on the ceiling. I reckon Morpheus was dealing much stronger stuff than my rheumatologist can lay his hands on… Fast forward to Day 3.

Living like an ostrich

February 20, 2016September 29, 2016 ~ Rachel ~ Leave a comment

Since my last post I’ve been hibernating; hiding away through the darkest, coldest, wettest months of the year. Pretty much ignoring the rest of the world, if the truth is told. Not very good for the social life or the soul I know, but solitude was what was needed. Now the sun, squirrels, and daffodils are back out I feel it’s time to get on with the year.

First on the agenda for 2016 is to pull my head out of the sand and deal with the pressing issue at hand: Shiny new medication. To take or not to take, that is the question.

Back in October, a lovely little drug called Azathioprine was offered up for grabs. Obviously, I agreed to give it ago (it seemed the polite thing to do). I duly picked up my first stash, brought them home and flung them into the kitchen cupboard.

Four months later and there they still lurk, tucked away behind the first aid kit, some leftover One Direction party cups and enough (unopened) alcohol to fell a perfectly healthy liver. Alcohol, it has to be said, I’m clearly never going to get around to finishing off if I start taking these pills.

Apparently it takes 3 months for Azathioprine to kick in and start making a difference. So had I started taking the stuff straight away I could have felt like a whole new woman by now, or at the very least, half of a whole new woman. But like with most medicinal items, they only get to work when they’re inside your system, not sat when they’re sat in the box.

So why haven’t I got on with it? Good question.

During these past few hibernating months I’ve done an ‘ostrich’. I buried my head firmly in the soft furnishing and pretended the tablets weren’t there. Not a very sensible, grown up thing to do, I know. I’ve honestly had every good intention of popping the first pill out, and on the days and weeks when the pain got way out of control, I regularly convinced myself I’d start tomorrow. Then I’d sleep on it, bottle it and change my mind.

The reason for this is quite simple: fear. Fear of taking such a ‘serious’ drug; fear of the short-term nausea, fear of the long-term side effects, fear of an even more useless immune system, fear of catching every passing bug, fear of shingles, fear of my liver failing. And let’s not forget the fear of going back to my rheumatologist without having done what I’ve been told.

So there it is. You name it, I’ve feared it. Looks a bit ridiculous when written down I know, but deciding whether to ingest horrible chemicals into your body as part of an ongoing daily routine is a hard call to make. Especially when you alone can make that call.

Worrying about it has stopped me sleeping properly. It has niggled away at the back of every thought. It has made me analyse and over think, and then analyse some more. And so the ostrich has remained, hoping that while it’s head remains firmly buried, the whole blinking problem will just go away. Eventually I bit the bullet…

Lists v Lupus

October 7, 2015September 29, 2016 ~ Rachel ~ Leave a comment

I love writing lists, always have. Getting things achieved, ticking them off and giving myself a smug pat on the back at the end of the day. Some weeks the lists are the only way to get anything done; they motivate me out from under the blanket and away from Come Dine With Me and Escape to the Country.

Today was a good day and I started off with more energy than usual. It’s fair to say I was positively brimming with great intentions. So I made a list, quite a long one in fact.

Things to do ranged from the quick and easy ‘clear up breakfast’ and ‘reply to email’ to the slightly more ambitious ‘make soup’, ‘do washing’, ‘sort legs’ (tired shouldn’t really be an excuse for hairy) and ‘put stuff on Ebay’.

This last item on the list was probably the most ~~unrealistic~~ ~~delusional~~ challenging of all, due to the ever-growing stack of unwanted clothes in the corner of the room. A stack that now looms so large it threatens to permanently flatten the pile of the carpet underneath.

Unfortunately, by the time I’d finished my first tea of the day my ‘great intentions’ threw in the towel and decided to lay down for a rest. So eight hours later there was only one item crossed off my list. Not bad you might think until you learn the only completed task on my list was to ‘Make a List’. At least I did that well.

The important thing to remember (as my husband keeps telling me) is not to get too frustrated; to accept my limitations and pace myself. Live like a sloth, basically. I think it’ll take me a while longer to recognise what my body can and can no longer do. I am however happy to accept that everything on today’s list can always be done tomorrow. Or the next day. Or even the day after that. Or failing that, by somebody else altogether!

Pointless questions and shiny new drugs

October 6, 2015September 29, 2016 ~ Rachel ~ Leave a comment

Had my twice-yearly Lupus MOT yesterday, and as ever I went in armed with plenty of questions and came out with even less of a clue. Realistically low expectations successfully achieved again.

The annoying thing was I actually look forward to these appointments, bizarre as that may sound. After months of pain there’s always a sense of hope to be had when speaking to someone in the know; in this case, it’s my rheumatologist. Also known as my go-to dealer with a prescription pad offering a choice of pick-me-up injections and ever stronger pills and drugs.

So armed with a pot of warm wee and my kindle I trotted off to the hospital with a slight bounce to my hobble. Breaking with NHS tradition there was no queuing for me that day. I was whisked onto those weighing scales (I wish they’d let me take my boots off, they’re really rather heavy) and into pole waiting position within minutes. So far, so good. My positive attitude went up another notch.

“So, how are you feeling?” he asked. What an unoriginal question, can’t these doctors at least make the effort to jazz it up a bit.

“Not great, tired as usual.” My standard Lupie reply. Then I realised I best seize the moment, so I got into my stride. “Actually, I’m continually exhausted, I struggle to stay awake and I’ve had to give up my job. I’ve got horrible pains in my arms that leap from joint to joint, my bones feel bruised and my skin is too sore to touch. I recently spent two days being prodded and poked by four different hospital departments and I seem to bleed at the drop of a hat. Oh yes, and my hips still hurt when I walk.” I was quietly pleased with this synopsis, especially given the diminishing state of my memory.

“Well, your bloods aren’t looking too bad, have you been overdoing things perhaps?” I gritted my teeth. Have I been over doing it? Hmmmm, let’s think.

(In the words of Craig David) I went swimming with sharks on Monday, scaled the side of a mountain on Tuesday, entered an Iron Man triathlon on Wednesday, base jumped the Shard on Thursday and wrestled a tiger on Friday. The weekend was mainly a quiet affair. Just a few body pump classes and a bit of caber tossing up North. No, I don’t think I’ve been overdoing things at all.

“I’ve barely left the house,” I said, “I did, however, clear out a kitchen cupboard last Thursday (after the Shard jump) and it took me 5 days to recover. Does that count as overdoing it?” No, I didn’t think it did either.

You see, here’s the frustrating thing about this shitty little disease: bloods tests can often lie. On paper I shouldn’t be feeling any worse than I did before, but in reality, I feel like crap, I hurt all over and staying vertical is a perpetual struggle.

The doctor’s solution on this particular visit? Firstly a possible new diagnosis to add to the list (fibromyalgia) and the suggestion of some different drugs to try. Part of me was rather pleased to make a bit of progress. Part of me was thinking ‘Jesus, how can I possibly consider this progress and why on earth am I pleased?’ But that’s the nature of the beast I guess; sometimes it’s just nice to have a new name to put the pain.

So next up to the table is Azathioprine, an immunosuppressant drug used to prevent organ transplants from being rejected. From my so far limited research, it works by suppressing or reducing the strength of the body’s immune system. In the case of Lupus this is meant to help calm down the pain and fatigue. Of course, the downside of suppressing or reducing the strength of your body’s immune system is that it also makes an already defenceless body even more susceptible to every blinking germ, bug, and virus that’s floating around.

As far as I can see it’s a toss-up between ‘exhaustion and pain’ v ‘hot and cold running infections’. What a cheery choice to make.