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.

doctor-pitbull-sick-and-always-tired

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.
text-sick-and-always-tired-copy

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!

signature ribbonSM

 

 

 

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:

 

The perfect Lupus video for kids

It can be difficult to explain to young children what Lupus is all about.  Too much information and they’ll panic; too little and they’ll struggle to understand why you’re fast asleep and their dinner hasn’t even left the fridge.

I thought this short clip below provided the perfect balance.  Thank you Lupus UK for yet another brilliant production!

Youtube video 2

Jet lag & Chronic Fatigue: a crippling combo

The downside of going on holiday is always the coming back and re-adjusting to the time zone you left behind.  Little Miss Jet lag is a bitch to deal with at the best of times; tag team her up with Little Miss Perpetually Exhausted and this body of mine has hit a wall with such force that it’s unlikely to bounce back anytime soon.

Feeling dog tired is hardly an unfamiliar sensation of course, but after such a lovely month away, doped up on ‘holiday adrenaline’ and achieving all kinds of impressive feats, I’d kind of forgotten how terrible ‘lupus tired’ is.  I had been hoping the azathioprine would have kicked in behind the scenes and be working it’s magic by now; sadly I don’t think that’s the case.

Since staggering through Heathrow early last Friday morning, my body clock has been all over the shop.  I’ve had trouble staying awake and trouble staying asleep. Each morning I’ve been waking up well before the birds put in an appearance.  Not waking up and feeling productive, mind you, just waking up and laying there feeling absolutely shattered.  Consequently by late afternoon, I’m forcibly peeling up my eyelids to try to keep them open.

Rather than starting to perk up as I settle back into England O’Clock, today – my fourth day home – was the weariest so far.  I was so far beyond knackered that by the time I’d eaten my breakfast, I was in need of a nap.  The day didn’t really progress much from there.  Aside from sewing on two name tabs and labelling some school socks with a pen, all I managed to do for the rest of it was lay on the sofa and binge watch a month’s worth of Sky Plus.

It wasn’t until I wandered into the kitchen just after 8pm that I looked down and realised I’d actually forgotten to get washed and dressed this morning.  Clearly, my family is so used to living with a sloth that no one saw fit to even question my lack of daytime attire.

Here’s hoping I manage to function in a more vertical position tomorrow.

signature ribbonSM

Getting away from the world 

24 hours, three flights, two sick bags and one emergency oxygen canister later, and we have finally arrived in a little corner of paradise called Krabi.  Time for some much needed rest and recuperation.

Set beneath towering cliffs in the middle of a tropical jungle, our resort is possibly the most idyllic setting in which to escape from the real world.  So far, so perfect.


Being one who struggles to stay awake and overly active at the best of times, the multiple flights, change in time zones and a big old helping of jet lag isn’t much helping the cause.

Day one: crawl out from under the mosquito net for breakfast; scuttle back to bed for a quick nap; wake up at 6pm; swim, eat dinner and then go back to bed.  All-in-all a thoroughly exhausting and non-productive day.

Plan of attack going forward: stay awake long enough to actually leave the bungalow and experience Thailand.

Day two: wake up from a deep, coma-like sleep; leave Arctic temperature of an air conditioned room and get hit in the face with a wall of 96-degree heat; stagger to the restaurant for breakfast and eat my own body weight in eggs and papaya.  I figure one will counteract the other…

Next for the tricky bit: protecting my sun-sensitive, lupusy skin in an environment that’s not dissimilar to a tandoori oven. First up, a very liberal helping of Factor 50 P20, followed by Factor 50 on the face and a bit more Factor 50 for good measure.  Plus, of course, the obligatory hat and big glasses.

So here I now lay, oiled up like a seagull in a shipping disaster, sweating like a beast and hiding under the shade of umbrella by the pool.

So far, so sun safe.

signature ribbonSM

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.

signature ribbonSM

Jeez, make up your mind already.

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.SickandalwaystiredAzathioprine

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.

signature ribbonSM