I must be enjoying myself

They say time flies when you’re enjoying yourself, so that must mean I’ve been having a blast for the last 10 months or so, because that’s how long it’s been since my last post 😜

It’s been a good break, though, because coming back to it now is making me take the opportunity to really think about where I am in terms of RA, life, the universe, everything. And pretty much all of it is positive, I’m pleased to say.

The RA appears to be well under control (I get nervous even saying that in case the gods are indeed Greek and I get zapped for hubris). I have been completely off Pred for 12 months, successfully quit smoking 11 months ago (okay okay, I’ve allowed myself a couple of ‘holiday treat’ smokes, but am relieved to report I got right back to zero per cent smoking immediately), and recently stopped taking my daily Arcoxia (anti-inflammatories).

So all I’m taking now, in terms of meds, are Plaquenil 2x day, Metoject 1x week (injectable), an iron supplement to help with the still overwhelming fatigue and a sage supplement to help with the unbearable hot flushes (totally works, highly recommend it ~ I take Menoforce, which is available from Boots, but I guess any sage tablet should work).

I have been having sacro-iliac joint problems; was in serious, eye-watering pain a few weeks ago, and then this was followed by a twinge-ing back muscle which turned into a full-blown spasm. Saw doc, took painkillers, had MRI (two compressed lumbar discs which is apparently completely normal “for a woman of [my] age”, how rude) and spent a lot of time lying flat on my back… All of which seems to have worked.

So well, in fact, that I have had quite a few occasions recently when I’ve stood up and walked about 10-11 paces without feeling any pain at all! That might not sound like much of an achievement, but anyone who suffers any kind of chronic illness will know what I mean when I say that for those 10-11 paces, I feel like I could run up a mountain, singing for joy, like a demented Maria Von Trapp.

Then by the 12th step, the twinges set in and I can feel my knees start to buckle as pain shoots all the way down from the very core of my bum cheeks (really) down the backs of my legs to my knees, sometimes as far as my ankles. Very effing annoying.

In terms of weight, I’ve actually managed to lose half a stone, mostly by cutting out crisps and reducing my chocolate intake to a normal human-type portion every other day (compared with downing half a giant bar of Cadbury’s fruit & nut without even pausing for breath).

It has occurred to me ~ despite originally thinking that it was the Pred which had caused me to pile on the pounds ~ that it might actually have been the Arcoxia. I didn’t lose an ounce after cutting out Pred and watching what I ate, but as soon as I dropped Arcoxia, that half-stone seemingly dropped off too… Fingers crossed!

Backing away, making no direct eye contact

When my eldest daughter was about three years old, she snapped one of my headbands in two while playing with it. Unaware that I was watching her, she panicked, put the bits down on the floor and walked away, very quickly. I stifled a laugh and quietly threw the pieces away without saying anything to her. (It didn’t take her long to come to me, scared and shame-faced, to confess.)

I feel like I’ve been doing the same sort of “put it down and run away” thing for the last few months. I stopped taking Pred (don’t look back!), I jab myself in the leg or belly once a week with MTX (don’t look down!), I’m trying to lose weight (don’t look in the mirror!), I had injections to try to fix decades-long problems with carpal tunnel syndrome (don’t watch while they stick needles in your flipping wrists!) and now, I’ve stopped smoking (don’t make eye contact with me!).

Note, however, that I say I’ve stopped smoking. Not that I’ve given it up. A friend of mine, a heavy smoker for most of her life, quit about six or seven years ago, justlikethat. She has not had a cigarette since, and I deeply admire her for it. She says one of the key things was to acknowledge that she’s a smoker, and always will be ~ but she’s not smoking right now.

It’s a psychological trickery, but it works. So it’s now been 28 days for me, thanks to Stoptober and my youngest daughter urging me on. The theory is that if I haven’t smoked for 28 days, I’m five times more likely to give up for good. The reality is, I haven’t smoked for 28 days and I want a cigarette five times more than I have ever wanted a cigarette in my life.

Mostly, though, I don’t even remember that I want to smoke. There has been no physical craving, only my mind and force of habit making me occasionally think I’d really like a smoke right about now.

So, anyway, the rest of it: no ill-effects so far from quitting Pred. The CTS injections seem to be working ~ I haven’t needed the Flexiseq since, nor the compression gloves at night, I can make a proper fist with my right hand again for the first time in over a year, and I can sign my name again without looking like it was done by a drunk four-year-old.

Downside: had my regular weigh-in prior to the CTS injections and had an out-of-body experience when the nurse announce that I was a perfect 100 ~ 100kg, that is. So, in the two years since I was diagnosed with RA, I have gained an astonishing 30kg. That’s 66lbs. Four and a half stone. The equivalent weight of a 12-year-old child. I know, right?!

As much as I’d like to put THIS down and run away very quickly, I can’t. Oh, the irony.

I’ll try anything once

At my last appointment with the specialist RA nurse, I was thrilled (and surprised!) to learn that according to my most recent blood test earlier this month, my inflammation markers are now within the ‘normal’ range! Still having problems with my right hand particularly, but WOOHOO!

Not entirely sure what accounts for this spectacular development as I’ve been trying a few ‘alternative’ treatments in addition to my regular meds ~ I mentioned Flexiseq in my last post, and I’m still faithfully using that every night when I go to bed, along with (extremely groovy) compression gloves. I’ve been reading about people who’ve had amazing results with arthritis by drinking a combination of cider vinegar and honey in hot water every day, so I’ve been giving that a go too (half a teaspoon of Manuka 10+ honey and three teaspoons of organic cider vinegar in a mug of hot water at least 2-3 times a day) and can report that it actually tastes lovely, a bit like hot cider.

I also alternate between two additional supplements at night: hemp seed oil and Jointace capsules, plus a Vit D tablet every other day too. Pred is down to 2mg/day and will go down to 1.5mg/day from next week, another big WOOHOO.

Another signficant change is that back in April, the nurse swopped my weekly Methotrexate dose from tablets to a self-administered injection. The dosage is the same (25mg) but apparently, the Metoject is more effective in getting the full dose into the bloodstream. So maybe that’s helped.

Meanwhile, the hot flushes are currently in hyper mode (was up 4-5 times last night feeling like my skin was on fire AND I was burning up from the inside!) so sleeping is a real chore ~ gave up this morning at 5:40am. Oddest thing about that is looking at my watch hours later and realising it’s barely 9am but I feel like I’ve done a full day’s work already ha ha.

Dancing on the ceiling (not)

A friend (much loved, deeply respected, frequently mocked and taken the p*ss out of) fought colon cancer a few years ago, and at one point used the words ‘bravely battling’ to describe his struggles. Publicly, we took every opportunity to poke fun at him for this (“so drama!”). Privately, we all marvelled at his continued humour and strength in facing that most frightening of illnesses, and saluted his courage.

Today, I am not quite as bravely battling RA (or, as I call it in my head, “F*CKING RA”), with the Big Black Dog of depression nipping at my heels. When my daily dosage of Plaquenil was doubled and my Methotrexate increased by another 5mg per week earlier this year, the RA specialist arranged for me to have baseline vision tests (between them, Plaquenil, Prednisolone and Methotrexate can affect eyesight).

Today, I went back for Part II of the check-ups, and the results of various horrible tests were not so good: I have ‘pigment leakage’ in both eyes, usually an early warning sign of glaucoma. They want to see me back in a year (!) with the proviso that if I have any unexplained blurred vision or pain in my eyes, I need to go back immediately.

Hopefully, of course, everything will be carefully monitored and all preventative steps and corrective treatment will be administered if necessary (and in time). I’m trying hard not to feel sorry for myself, but all I want to do is climb under the covers and bawl my eyes out.

I have been slowly cutting back on the Pred, though, so am now on 3mg a day as of today. My hands have slowly been getting better (I can almost hold a pen and write almost legibly again, woohoo) bar a couple of days like on the train up to Inverness recently — I guess the physical exertion of dragging a case through the crowds and up and down stairs to get from home to Euston took its toll, and my left hand, arm and shoulder were in screaming agony.

I’ve also been using a new cream called Flexiseq (the name still makes me chortle) every night for about the last 2-3 months, which — it claims — is absorbed through the skin directly into the joints, where lipids or something help to plump up the cushioning/fluid/whatever. I can vouch for its efficacy; the swellings on the joints in my right hand have gone right down. The pain almost completely stopped within a couple of weeks and while I haven’t regained complete bendability in my fingers, I can at least do most things again; huzzah.

Actually, it is the fatigue which has caught me off-guard. I’ve always believed that while my general fitness is rubbish, I could walk for miles… our Scotland trip knocked that fallacy on its head. I can still walk, I can still do things, but I can only handle a couple of hours a day at the most, and then I’m pretty much wiped out. When we first got to Mud Island last August, I’d thought the tiredness was because I was finally paying back the sleep debt accumulated over decades in HK… but this isn’t just sleepy, it’s bone-tired.

RA is like having the rug pulled out from under your feet. You’re flat on your back, winded, in pain, and wondering when you should try to pull yourself back up again. For now, I’m just going to lie here and admire the ceiling.

A salute to Kathleen Turner

Until a few days ago, when I idly clicked on a link titled ‘10 Celebrities With Rheumatoid Arthritis‘, I had not realised that Kathleen Turner has RA. As I sit here typing with three fingers and my right thumb (the only digits still just about functioning), I feel ashamed that it hadn’t occurred to me that her slide into oblivion post-Romancing the Stone and Jewel of the Nile had been down to anything other than the typical, clichèd Hollywood topple off the pedestal, Kirsty Alley-style.

But RA doesn’t care who you are. At least my 20kg weight gain and general falling apart (hey, my eyebrows almost meet in the middle these days; can’t manage tweezers) has taken place in relative obscurity, witnessed only by a few. But for Kathleen Turner, to go from how she looked in Body Heat to how she looked in the 90s, when people ~ myself included ~ tut-tutted judgementally and snidely commented on how she had ‘let herself go’ to the point where she looked like she was (in the words of my boss Ken McKenzie) “one meat pie short of an explosion”… It makes me feel ashamed of myself.

So, I’d like to apologise to her for my incredible shallowness and lack of compassion; back in the 90s, I guess I was still young enough and arrogant enough to believe that middle-age, gravity and a slowing metabolism would never, could never, happen to me, never mind any form of long-term illness or disability.

And I’d also like to tip my hat (sidebar: my hair seems to be falling out less these days, woohoo) to her for pushing through and making a comeback, for not letting the bastards get her down.

I saw the rheumy today: because of my hand and feet, meds have been increased, review in two months, if no improvement then I proceed to the next level of treatment (injectables). Steroids stay because, although it is highly unusual for anyone to have been on daily ‘roids for 18 months as I have, doc doesn’t want to cut back any further at this point.

She also asked me how I felt my health and general wellbeing had been over the last week, on a scale of 1-100. I scored myself at 70 (as there hasn’t been a day when something wasn’t hurting; plus fatigue has been overwhelming) ~ but you know what? I am actually really proud of myself. I’ve got out of bed every day, continued working and tackling household chores, and apart from a couple of times when I’ve had to ask for help with things like turning a key in the lock or doing the school run when my hand hurt too much to grip the steering wheel, I’ve carried on.

And I thought, wow, imagine what I could do if I was running at 100% — I’d take over the f*cking world I would:)

Sweet dreams, sleep well

In the early dawn of Sunday, 5 January 2014, a young man lost his life in an accident that will never make any sense. He was so loved, and by so many; now his mother is wracked with the kind of grief that chokes your heart and makes it hard to breathe, his father almost mute with pain, his sister bereft at the loss of a brother she treasured more than could ever be described in anything so base as words, his stepmother bewildered and torn apart.

His name was Benedict Bock, he was 22 and he was my nephew. We knew him as Bene; he was 6’2″, maybe 6’3″, all arms and legs and soft sweetness and laughter in his eyes, kindness and compassion in his heart. I did not know him as well as I wish I could have. He was in Germany; I in Hong Kong. Occasional summer holidays over the years were the only times our paths would cross.

But even as a little boy, he radiated a sunny aura; an easy-going, calm (and calming) personality. He was the kind of child you wanted to hug. Bene was easy to love.

Even as I write this, two days after his funeral (where an incredible 200 or so of his friends, family and colleagues turned up to say their farewells), I struggle to understand and accept what happened. In the back of my mind, a faint, foolish light of hope still flickers that someone will say, “oh, it was all a mistake, he’s fine”.

I went to his christening — a tiny, placid, smiling baby in a long white gown — and I went to his funeral. It is wrong. It should never have happened.

One of the songs which his family chose for his service was Somewhere Over the Rainbow by Iz Kamakawiwo’ole; the next morning, after the clouds cleared, a huge rainbow arched over the Rhine Valley. I know all of us who saw it took a sharp breath as tears filled our eyes; I know we all believe that somewhere over that rainbow, Bene was letting us know he would always be with us.

Burning the candle at both ends

Update from latest blood test and visit to doctor: am recovering nicely from the cough & cold I’ve had for the last 10 days or so (yay!) but the inflammation markers from my blood test have leapt sky-high into the ‘red zone’ again. Doc reckons it was because the blood test was done while I was still quite sick, so she has said not to worry for the time being ~ especially as I haven’t had any major joint problems. So my daily steroid dose will stay the same (we had been slowly reducing it) for the moment, and we’ll see what happens with my next blood test in about 3 weeks’ time.

We moved into our house just about two weeks ago, but it feels oddly like we’ve been here forever. We’re not sure why that is, but I like to think it’s a good sign, that the house is so ‘us’ that it has felt instantly like home. The move itself went pretty smoothly (two men and their van turned up as arranged and because it took far less time to shift our stuff over, they gave us a 35% discount!) but I’m not sure how long it will actually take me to recover physically from it.

Apart from crushing fatigue, it is my hands which have been most affected; probably because there’s been so much unpacking, shifting things around and sorting out to do (and still not completely finished, either!). My right hand in particular feels like it has been electrocuted… burning pain, swelling, a weird and constant tingling, and a throbbing, hyper-sensitive index finger and thumb. The joint immediately below the index finger feels like a swollen, sore knot; you can’t really tell anything is amiss by looking at the top of my hand, but gently pressing my hand against a flat surface is quite a shock ~ that joint is actually as big as a marble on the palm-side.

Which means I’ve been getting lots of practise using my left hand instead… I managed to even slice mushrooms the other day without cutting off any of my fingers, so am well chuffed. AND I managed to wash and dry my hair again for the first time in about four days yesterday, when shoulders, arms and hands relented long enough for me to shampoo, rinse, brush and blow-dry before pretty much shutting down and sulking.

I’ve started taking hemp seed oil capsules as well as the collagen, glucosamine chondroitin and omega-3 super capsules (and all the regular daily meds) so hopefully that will have a positive overall effect. And I’ve even started eating fresh fruit more regularly… anyone who knows me will know what aberrant behaviour this is for me because I pretty much hate fruit. Vegetables I love. Fruit I can’t be @rsed with.

As I write this, on the eve of Christmas eve, the wind is howling outside, it is pitch black (and has been since 4pm, gotta love these Britisher winters) and raining. I have a million more things to do for work and home and Christmas and insurance paperwork and suchlike, but I am feeling at peace with the world.

Merry Christmas all, and all the best for a good 2014.