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.

Could Dory find a new immunotherapy treatment?

June 17, 2016 ~ Rachel ~ 1 Comment

Could this be a milestone moment for the treatment of Lupus?

Research shows that sea anemones that grow on the ocean floor (and provide a home to Nemo, Dory and Marlin) are showing promise as a source of treatment for Lupus. Dr. Anne Stevens, who treats and studies lupus at Seattle Children’s Hospital and Seattle Children’s Research Institute, is presenting results this week from her research on dalazatide, a compound derived from sea anemone venom that she is researching to determine if it could be used as a potential immunotherapy for Lupus. Read full article here.

An unwelcome visitor came to stay

June 9, 2016September 29, 2016 ~ Rachel ~ Leave a comment

For the last week, I have been living under a cloud. A great big, heavy cloud that has hovered above my head and pressed down on me like tonne of bricks.

I’m not sure why this dark cloud descended on me one night, nor what started it or where it even came from. How this unwelcome visitor snuck into the house and got past the dog, I have no clue; he normally barks at everything.

At the beginning of last week, I was feeling quite bright; the last of the azathioprine was loitering in my blood stream and I had some spare energy still knocking around. So to make the most of this ‘get up and go’, I did stuff. I did a lot of stuff. I did way too much stuff. And then I paid the price.

By Thursday I was flagging, by Friday it was all too late. Engines off, power down, body into battery saving sleep mode. My ‘get up and go’ had got up and gone. Bugger it, why me and it’s not fair – I hate Lupus.

That day and the three that followed could most definitely be classed as inside the house days. I didn’t really move more than I had to, just a slow scuffy shuffle from room to room. I couldn’t be bothered to do anything, think anything or feel anything. I didn’t want to read, write, rest, eat or brush my hair. Worse still, I didn’t want to talk, laugh or even smile. I’d completely lost my happy.

Sure I’ve had slumps before, but none like this. My mood was as flat as a Dover sole. But why? Everything in my life (health aside) was great, yet I felt utterly miserable, desolate even. I also felt strangely detached from everything and everyone around me, and I didn’t know how to reconnect. Worse than that, I couldn’t summon up the energy to even try to reconnect.

Thank God for my husband, the one who knows me so well. He watched, waited and persevered. He tried every trick in the book to chip away and dig me out from my pit of misery and gloom. It took a painstaking line of questioning, several pick axes, a crowbar and a box of tissues. Oh, and a box of my favourite Lindor chocolates.

Two days on and I’m still not sure what that was all about. Perhaps it all stemmed from my frustration and despondency over the great medication fiasco. Or perhaps my brain was short wiring from months and months of erratic sleep. Or maybe my body was simply objecting to going cold turkey after months on the drugs.

Whatever the reason, I’m hoping that wretched cloud stays well away and doesn’t invade my home or head space again.

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.

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.

What is Sjögren’s Syndrome?

May 12, 2016September 29, 2016 ~ Rachel ~ 3 Comments

Bus stop sign Autoimmune 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.

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’.

When diagnoses are a bit like buses

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

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.

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.

Day 60: it was all going so well

April 21, 2016September 29, 2016 ~ Rachel ~ Leave a comment

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.