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Martini On The Rocks, anyone?

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Last month I described how much it hurt to inject Humira, the anti-TNF biologic which is prescribed for my ankylosing spondylitis and IBD. I scoured the internet for advice on how to reduce the pain, and found that most patients favoured numbing the injection site with an ice cube before injecting. Another patient’s nurse had advised that she rub either side of the site gently as the needle went in to increase blood flow and encourage the solution to dissipate more quickly. Someone else said that putting their leg up on a chair so it was straight, rather than bent, worked wonders. Frankly, I’d have hung upside down from a tree whilst smoking a cigar and counting to 100 in Mandarin if someone had suggested it.

Armed with that information in mind, I set up shop for my next injection. Believe me, I had to gear up to that all day. It’s like knowing you have to punch yourself in the face after dinner to give yourself a convincing black eye so you don’t have to go to work the next day. I mean, only a total mentalist would just go ahead and punch themselves in the face, right?

This time I poured myself a Martini, took a fake Cornetto from the freezer and decided to try out three new moves:

Right, let's do this

Right, let’s do this

Move One: I put my leg up on the chair, out straight rather than bent

Move Two: I rubbed the injection site gently either side of the needle as I pushed said needle into my thigh (this was harder than it sounds. I could have done with three hands at this point)

Move Three: Instead of trying to inject in one go, like I did with Enbrel, I thought some breathing exercises would help. I took a deep breath and exhaled as I pushed the plunger thing down for two seconds. I stopped for another two seconds, then did the same again. I was still on the verge of tears but puffing my breath and taking it slowly worked. It was maybe 30% less painful than before.

Two weeks later, I did all the same stuff but I also numbed the injection site with an ice-cube, swapped the fake Cornetto for some Lindt milk chocolate and substituted the Martini for a rather nice dessert wine.

Booze, drugs, legs

Booze, drugs, legs – like a scene from ‘Trainspotting’ only clean

I’m not sure if the ice, the dessert wine or Lindt were to blame (possibly none of the aforementioned) but I do know that it hurt more with a cold leg, so I scrubbed that move off the list.

Such a tiny bit of blood for something which hurts so berated

Pah – such a tiny bit of blood for something which hurts so flipping much!

My dead mink, Fried Eggs, then picked up the syringe and said he wanted to try it because, and I quote (no, really) that he ‘had a sore leg from falling out of bed’. I had to wrestle it from his little paw before he hurt himself. Kids, eh?

FullSizeRender

Fried Eggs, no!

So there you have it. It still hurts, but a bit less. Really, I wouldn’t even do it if I didn’t have a treat at the end of it. That, and the fact that without it, I would die. I’m not being dramatic. I would die. The pain would be so agonising that I would end up throwing myself off a motorway bridge. Please don’t think I’m being glib about suicide; I’m not. I’ve been in that exact same situation and it was anti-TNF therapy which saved my life a decade ago, and is still doing so today.

That’s my ritual now. I inject, Gautier brings me a treat and afterwards we watch ‘Brooklyn 99’ on Netflix so I can laugh my head off rather than think, ‘OW OW OW OW OW MAN THAT STINGS’ for ages.

In other news, I fell off some rocks and acquired a salad spinner.

The salad spinner is my new friend; it’s made by a company called OXO who, in a nutshell, design everyday objects things better than other companies design everyday objects. If you’ve got fibromyalgia or arthritis in your arms, spinning salad is quite an effort (although granted, not one you probably make that often). I can’t even eat salad very often as I can’t digest it, but when I do, I use this. It has a clever button which does all the work for you while you stand there resting your arms and saying ‘Keep going, little spinner!’ Even their vegetable peelers glide over carrots like a dream; never thought I’d find pleasure in a peeler but I do. If you’re in pain, every effort hurts, so it’s worth investing in items which reduce that. If you’re not in pain, you’ll still have fun spinning salad. You can thank me later.

As for the rocks, Gautier and I were at a seaside town north of Bordeaux called Royan which we didn’t much like. I was in my bamboo ensemble: bamboo bag, bamboo earrings, bamboo bangles, bamboo-ish dress with bamboo buttons; here’s me taking a photo of myself in the loo, doing my best stupid idiot face into the mirror:

Bamboo overload

Bamboo overload

It turns out Royan didn’t much like me either; after a lovely dinner at a beach side restaurant at sunset, I suggested we go for a little walk on the sand. There I was, full to bursting with fish goujons and chips and so happy to be back by the sea (I miss Brighton so much I can’t tell you). Anyway, I digress. Here is my dinner:

Yum! Everything was going so well...

Yum! Everything was going so well…

Looks perfect for a midnight stroll, doesn’t it? That’s what I thought.

IMG_2287

I was well excited about the sand

Granted, I’d had a cocktail which must have clouded my judgement somewhat, but here’s what happened: I attempted to climb over a low wall, onto some giant rocks, then step down to the sand. Gautier was helping me. It should have been one, two, three steps and landed. Unfortunately, what I had thought was sand was, in fact, a massive, flat rock which was just looked – under the midnight sky – like sand.

Needless to say I lost my balance and was catapulted onto my left shoulder and my FACE. Yes, my face. My right leg went from under me and my foot scraped itself on the rock. Thankfully my face found a bit of sand rather than rock. I was holding my tiny bear, Chips, in my left hand. He screamed, I screamed and my aim was to save him from hitting the sand, so I held him aloft, which upset my balance even further. What a div.

Gautier picked me up and told me off. He is like that; he tells me off first, then asks if I’m OK. I wasn’t OK; my foot was bleeding and I did a cry.

Off we went, back to the hotel (which was fortunately about 20 feet away), with my sandal in one hand and a very traumatised Chips in the other. I limped back to our room and did the first aid bit. Gautier enjoys pouring white spirit on cuts and grazes; I was pushed over by a strong wind once and grazed the hell out of my hands. He just threw this stuff on them like a torturer would. I was squealing like a stuck pig. Man, that stuff BURNS. Chips wanted to help, so he put the plaster on.

Poor Chips; he was so upset but stayed calm to administer first aid

Poor Chips; he was so upset but stayed calm to administer first aid

Great job, Chips!

Great job, Chips!

The next day I limped about even more than I usually limp about, and wondered aloud my shoulder hurt so much. ‘Because you fell on it,’ Gautier reminded me. By day two, I could barely stand on it as the bruise started to come out. On day three I got bitten by something in the garden (not a camel, more likely a spider) on the same foot, which then blew up like a hideous sausage.

At one point I thought I was going to have to saw it off; fortunately some anti-histamines and a herbal concoction from the mother-in-law’s medicine cabinet saved me from that. Hallelujah.

This week I am mostly attempting not to injure myself or get bitten.

I’ll let you know how I get on.

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The Drugs DO Work – But Why Do Humira Injections Hurt Like The Worst Kind of Hell?

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Right, so I promised I wouldn’t take so long to write the next installment of my silly life, but I broke my promise. I don’t know where the time goes; really I don’t. Humira, then. For those of you you wondering what that is, it’s not a brand of Japanese car (come to think of it, it might be. I haven’t checked), it’s the biological drug I switched to at the beginning of April. I went into detail about why I switched after a decade on Enbrel, a similar biologic, in my last blog. I also talked about how apprehensive I was about switching. It turns out that so far, it’s probably one of the best decisions I’ve ever made (aside from saying ‘Yeah, OK!’ to Gautier when he proposed to me, drunk out of his French mind back in 2007).

Gautier, yesterday. Maybe

‘Marry moi!’

My new rheumatology nurse specialist couldn’t understand why I was still being prescribed a drug which wasn’t working. I mean, it was working up to a point – I could walk most days and had far less pain, generally, than I did before I started taking it – but I could count only around 20 pain-free days during the past year, a calculation which was met with a gasp from the nurse and a kind of ‘Right-that-doesn’t-sound-good-when-I-say-it-out-loud’ face in return.

It was at that point that I realized I’d been a bit hard-done by. Any rheumatologist worth his salt would have suggested I switch years ago. Of course, having one 20-minute consultation a year – that’s right, one a year – doesn’t give them much time to work out that there’s something strange afoot. They don’t have time to read their patients’ notes before they sit down, so at least five minutes of the appointment is spent reading the latest blood results and saying ‘Right, what is it you’ve got again? Remind me.’ The first rheumatologist I had would start every appointment with the sentence, ‘So how are you getting on with the bag?’ He was referring to my ileostomy but I hated that he called it a ‘bag’. I’d say, ‘Actually, I haven’t got it anymore, I have a J-pouch. I didn’t have it last time I came in either, nor the time before that.’ Consultants can’t possibly remember everything about their patients’ health; they’re over-worked and we’re on this target-lead conveyor belt where the only phrase which links us all is ‘Next!’

I got told by the next rheumatologist that I needed to ‘get used to the idea’ that I would always be in pain. To that end I was supposed to have some kind of counselling from a psychologist at The Pain Clinic, but someone must have put the referral letter on the wrong pile because a year later, when I chased it up, nobody knew anything about it. Brilliant. Obviously by that time I’d talked myself into it and was resigned to the fact that at some point, I would probably opt to take my own life, because being in pain every day is not only mind-crushingly exhausting, but equally, really boring. Existing is not the same as living, and anyone in chronic pain will tell you that. We lose so much, bit by bit, month by month until there comes a point when we have nothing left with which to fight, or nothing left worth fighting for. I could sense that the consultant was more than ready to leave those four walls with their posters of the inner-workings of the spinal cord and get out on to the golf course; after all, dealing with the likes of me, with my incurable illnesses and barrage of questions can’t have been much fun.

Here’s the thing, though: when I asked about switching treatments, he shrugged and said, ‘It’s up to you.’ When I asked questions such as ‘Have any of your other patients switched? What is the success rate for that? Might I get side-effects I haven’t had on Enbrel? How long would I have to stop taking Enbrel before taking Humira?’ and stuff like that, he said, ‘I don’t know,’ ‘I’m not sure’, or ‘Maybe’. Seriously. If he genuinely didn’t know the answers to my questions, who did? How can he be in a job where he’s prescribing these drugs to patients but has no idea how they work? I was like, ‘Say WHAT?’ So the nurse convinced me. Good for her. I’ve waited 15 years for someone who could help me to actually help me.

My new rheumatology nurse. Maybe

Good nurses are brilliant, always have been

I asked for the Humira to be in pen-form, rather than syringe. I was fine with the injection for Enbrel and jabbed that needle in my thigh twice a week for 10 years like nobody’s business. I couldn’t even feel it most of the time, unless I hit a blood vessel. I liked the idea of the pen being much easier to travel with than the plastic cartons and you can line them up nicely in a little travel case because they take up way less room. I read all the instructions and decided to give it a go in my stomach. I’d never injected here, as I have so much scar tissue from my colectomy and J-pouch surgery. I held the pen, poised for action, pressed the tip and BAM!

Me just after the Humira pen burst into my stomach

Me just after the Humira pen burst into my stomach

ERMAHGERD IT HURT. The force of it was nuts, I felt like I’d been stabbed with a Biro filled with molten lava. It actually made me cry, and that’s not something I do very often, unless I drop my ice-cream or think about the end of Top Gear. I had no adverse reactions other than screaming my head off and crying. At the time I was in a lot of pain as I was at the back end of just having sold the house and sending its contents to France. My stress levels were through the roof, and I felt so rough I could barely walk around the house, let alone go out, for the first 12 days after arriving at my parents’ house. Fun times. Anyway, I started to feel better by the second dose, two weeks later. Again I pinged it into my stomach, again I screamed and again I cried. Really. I couldn’t figure out why it hurt so much when needles have never been an issue for me (unless someone is waving one in front of my eye, say). By the time I was ready to leave for a couple of weeks in France, I had requested that my prescription be changed back to the syringe.

Me with the Humira syringe. I need to get out in the sun, I think

Me with the Humira syringe. I need to get out in the sun, I think

So I get the syringe option now, and think, ‘Ha! I know you! You don’t hurt!’ but guess what? ERMAHGERD IT HURT. I didn’t scream, because the process wasn’t sudden like it is with the pen, but I actually thought I was going to pass out with the pain. I was properly sobbing with the pain. It was like injecting acid into my leg. Gautier looked up from the iPad and said, ‘Monkey, are you OK?’ as beads of sweat popped off my forehead and I apparently went as pale as talcum powder. This was 10 seconds of extraordinary agony as opposed to about three seconds of it with the pen. ‘This hurts just as bad!’ I cried, through a face full of hot tears, grimacing like someone who’s just discovered a rotten corpse in their bed. I drank a glass of water, stood up and then poured myself a glass of wine and drank that.

I’m due to inject again on Monday, and I’m properly dreading it. It must be something to do with the formula being pre-mixed, because with Enbrel, you have to put the powder in with the saline to mix it first. I’ve no idea why that’s the case, or whether I’m just going soft in my old age, but man, it’s awful. Thank God it’s only once a fortnight, but gearing yourself up for super pain isn’t easy. A bit like when the bloke who got stuck in the rocks in the American desert for 147 hours or something had to cut his arm off with a blunt penknife (if I said that out loud to Gautier, he’s say this: ‘Yes, monkey, it’s JUST like that. My God.’) I’d be interested to know if anyone else has made the same switch from Enbrel to Humira, and if they noticed the difference. I’d also like to be sent some edible gifts from anyone who hasn’t had to even consider taking biologics in the first place, because that means you’re really lucky, and I’m not. Seems fair, no?

The thing is, two months in and my pain has improved by miles. I’m waking up feeling COMFORTABLE. If you have scoliosis and spinal arthritis and fibromyalgia, you’ll know that it’s nothing short of a little miracle. I want to laze in bed all morning just because the level of pain I was in for the last 15 years meant I couldn’t wait to get out of bed, as the lack of mobility made everything worse. So that’s my news. I’ve got loads more, but I wanted to focus on that for now.

My tummy stuffs aren’t doing so well, which is a bit annoying as Humira is the treatment of choice for IBD. Gah. I’m in France at the moment, typing this on my laptop in the giant garden, sweating buckets despite being in the shade. It’s going to be between 32 and 38 – yes, 40 – degrees (that’s Celsius, by the way) over the next week. My stupid feet are already swelling up at the thought of it, and it’s only day one. Plus I fell on some rocks the other day so one of said balloon feet is all scraped, too. More on that next week; trust me, it’s quite a story. Have a lovely week, everyone. It should be gloriously sunny wherever you are, as long as that’s not Australia, Alaska or the Antartic. All the places beginning with ‘A’ apart from Andalucia, Africa, America… you get the idea. Bisous xxx

Arthritis Awareness Week – The Drugs Do Work (sort of)

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Mostly Cloudy, With Some Bright Spells

It seems appropriate, given that it’s Arthritis Awareness Week that I should write about arthritis. You know, to make people aware of it, to put my ‘grown up’ hat on and write something fairly serious for a change, like any other supposed grown up who’s afflicted with arthritis might.

The trouble is I’m just not very good at being serious.

And I don’t have a ‘grown up’ hat.

I have an owl hat. It’s the least grown up hat you can have.

I’m better at being silly.

Silly stuff makes me laugh; laughing makes me forget about the serious stuff.

You know, like arthritis.

But just this once I won’t write about how much I love Tom Cruise and llamas. For once I shall concentrate on something serious. No silly pictures. No clever captions. Just arthritis.

*Rolls up sleeves, clears throat*

I have had arthritis (to be specific, axial spondyloarthritis and Ankylosing Spondylitis) for 14 very frustrating and very painful years. As well as affecting every minute of every day of my life, it affects my husband, my parents and my (few) close friends. I’m also well aware that it affects millions of other people, young or old and in between. It’s a condition which comes in many forms; more than 100 of them, if you care to count them (which only scientists can), ranging from the waiting-to-fracture bones of osteoporosis to the clenched, swollen fingers of rheumatoid arthritis; grandma’s achey knees which predict rain to the poor kid down the road who’s on crutches thanks to juvenile arthritis. From psoriatic arthritis to lupus and gout and – depending on your specialist – fibromyalgia and everything in between, there really is something for everyone.

I hate arthritis. It hates me back.

I hate what it’s taken from me and what it continues to take. I hate that while it doesn’t define me, it does a good job of trying to. I hate that it makes simple tasks so difficult. I hate that it’s always there, like a black cloud, following me from the moment I wake to the moment I go to sleep. And, thanks to arthritis, that’s not much of a let off in between. It prevails in everything I do; whether I’m shopping, showering or socialising. It makes all three herculean tasks at the best of times. If I can get through one of those activities per day without searing pain, I literally squeal with joy. Suffice to say I haven’t done much squealing since the turn of the century.

Back in 2004 I was given the opportunity to try Etanercept, one of the anti-TNF drugs newly approved for use in patients with rheumatoid arthritis who weren’t responding to conventional treatment. It hadn’t yet been approved for patients with Ankylosing Spondylitis, which is what I had, but my rheumatologist, faced with a suicidal patient (I was talking rationally to my parents about ending my life, that’s how bad things were), asked the local health authority to allow me to try it. It was my last hope. I was 32 years-old, crippled by agonising pain. Arthritis raged through my body, already so frail from two bouts of traumatic bowel surgery.

Etanercept worked immediately. My pain didn’t dissipate completely; rather the inflammation in my sacro-iliac joints was controlled, reduced, whatever. I could walk. That was enough. It continued to work for several years, not perfectly, by any means, but I was able to put one foot in front of the other without screaming in agony. I was able to sit comfortably; sometimes I was even able to dance. It was incredible. It gave me a good deal of my life back, and that was a vast improvement on what I had had before.

Back then, the side-effects of the drug over long-term use had not really surfaced. Patients were just starting treatment; there were no records of long-term use.  After a couple of years of injecting it into my thighs twice a week, the effects gradually began to wear off. I noticed the pain creeping back in places; I wasn’t sleeping, I was having trouble getting out of bed… finally I relapsed so badly I was not only housebound for three weeks, but had to be taken to the toilet, helped out of bed, that kind of stuff. The kind of stuff 90 year-olds in care homes need help with, except I was 35 years-old, newly married. The honeymoon period never even began.

Eventually, the pain settled down. I’d have OK days and terrible days. Good days? I’d get a couple of those a month, maybe three if I was lucky. I dreamt of averaging one good day a week; those dreams are unlikely to be fulfilled as I have since been informed that the bulk of my pain – not the inflammatory pain helped by the anti-TNF therapy – is actually due to scoliosis. Two of them, to be exact.

Gradually, the side-effects for long-term use in anti-TNF therapy became common knowledge. I read a lot. I wondered if I ought to stop taking it. Lymphoma was top of the list, followed by ‘other cancers’. This is on top of tuberculosis, pneumonia, multiple sclerosis and lupus.

I had been experiencing new, unsettling pains. Nerve pain in my neck, excruciating pain in my shoulders, numbness in my fingers, pain in my arms, my hands. I decided to come off the therapy, afraid of what might show up in my next blood tests.

‘As long as I can walk,’ I reasoned, ‘I should be able to manage the rest.’

I didn’t manage the rest.

Not one bit.

I was fine for a week. As in experiencing-the-same-levels-of-pain as-normal kind of fine. Around 10 days in, it hit me, like sledgehammer. I woke up at 4.30am barely able to breathe. The pain engulfed my ribcage, swam out to my shoulders, down my arms, down my legs. My face didn’t hurt. My feet didn’t hurt. Everything else did.

But I hadn’t had any nerve pain or numbness since I stopped taking Etanercept. That told me all I needed to know. However, the flipside was that I couldn’t walk, couldn’t even sit on the toilet without screaming in pain. My hips just gave way half way up the stairs. Gautier was at work, so I sat there for about an hour, crying with the pain, wondering whether to continue up or go back down. An hour later, I was down, sweating and puffing and clutching the banister. It was not a good look.

I could barely hold a cup of tea. I cooked dinner in tears; I bathed in tears, I had nightmares so terrifying I woke myself up yelling ‘No! No!’ at awful things I could barely comprehend I was dreaming about.

In short, it wasn’t really going to plan.

On day 12, I started injecting again.

On day 14, I started to feel a bit better.

On day 16, I managed to walk around, to sleep (and boy did I sleep, after all that)

Three months later, I’m back to where I was before I came off it, but with a massive fibromyalgia flare-up thrown in.

Healthy people have choices in life. Chronically sick people generally don’t. Choosing to come off a drug because I am more afraid of cancer than I am of not being able to walk was my choice. At least I thought it was my choice, yet I was in such terrible pain without it that I thought, ‘I’ll have to risk cancer’.  So now I await my fate, in pain. Will it be lymphoma? Will it be skin cancer? The stress of thinking about all this just feeds the disease; the stress itself will probably cause cancer.

It’s not much fun.

Which is why I write about llamas and Tom Cruise and all the other things which take my mind off the fact that my body is falling apart, that thanks to the scoliosis and the fibromyalgia, I’m not getting any better, I’m actually getting worse.

I went out to buy a cushion today. Yes, you read that correctly. A cushion. Well, two cushions. Actually, it was four, but turns out I only needed two (everything I order online ends up being gargantuan. It’s an affliction in itself).

Anyway. I’d toyed with the idea of getting the bus, which would save me walking, but I had to drop an ebay parcel off  – beautiful 1950s stilettos which I sold because I don’t go anywhere to wear them, another reluctant realisation, another nail in the coffin. So I drove.

I dropped the parcel off. I headed into town. Roadworks sent me in the wrong direction and I ended up having to park a mile from where I’d planned to be. A mile! Good thing I’d brought my bus pass. I got the bus to the shopping centre. I hate shopping centres. I mean, really hate them. The lights, the people coming from all directions, the wailing kids, all the rubbish stuff for sale (I am not a fan of modern clothes, which means unlike most women, I can’t bear shopping. True story).

I arrived at the shop. Along the way I’d decided that I was desperate for the loo. I have an internal J-pouch after surgery for ulcerative colitis, so when I need the toilet, I really actually need the toilet. Like, now kind of need it. My hips hurt. It was all going a bit wrong.

Naturally the customer toilets I’d been so relieved to see were out of order. But of course! The main toilets in the shopping centre were a good five minutes’ walk away. Well, they were for me. Two minutes for anyone without raging hip pain. I nabbed a sales assistant:

Me: ‘Excuse me, I see that your customer toilets are closed. Is there any way you could let me use the staff toilet? I have arthritis in my hips and it’s a long walk to the public toilet and I’m about to burst.’

Sales Assistant: ‘Sorry, that’s not allowed. You have to use the ones upstairs. They’re the nearest ones.’

Me: ‘Oh. OK. It’s just that it’s very painful for me to walk. I’m a bit slow, and I’m really, really desperate.’

Sales Assistant, pointing at the exit: ‘You poor thing, my mum gets arthritis in her knees, I know what that’s like.’

Me: ‘No, actually, I don’t think you do.’

With that I gritted my teeth, clenched my buttocks and made my way through the home furnishings department, out of the store, up the escalator, past four more big shops, turned left, walked for just over a minute and finally arrived at the public toilets at the exact point I thought, ‘I am actually going to have an accident if my hips don’t disintegrate first.’

I didn’t have an accident, but I might next time.

Raising awareness of chronic, painful conditions means reaching beyond those afflicted by it. It means changing people’s perceptions of who has arthritis (if I hear ‘You’re a bit young to have that’ or ‘My nan has arthritis’ again I will scream). This is why I usually write silly stuff instead of serious stuff, although I always touch on the conditions from which I suffer. It think it works. Writing about being ill only serves to attract other ill people, and they already know what it’s like to be ill. Writing about llamas and Tom Cruise, on the other hand, with a little bit about being ill somewhere in the middle, does the trick.

I’ve proven that theory by writing ‘Mostly Cloudy with Some Bright Spells’ in the same way; fun, ill stuff, adventure, nuts stuff, ill stuff, hilarious stuff, ill stuff. Funny, sad, funny, sad, funny, sad and ends on optimistic, spirited and really rather silly note. It is a story about a person, not an illness. Arthritis is a part of my life. Colitis is a part of my life. Scoliosis and fibromyalgia are all parts of my life and while they jostle for second position, I remain in the lead. I stay, to what little extent I can, in control.

Half the reviews for ‘Mostly Cloudy’ on Amazon are from other very ill people who say the story resonates with them. The rest of the reviews are from the luckiest people in the world; the ones who are healthy. They are humbled, informed, less quick to judge and I hope, more willing to help.

So the next time you think, ‘Why doesn’t she complain more about pain and stuff, like other bloggers do?’ there’s your answer: if we’re going to have any hope of changing attitudes about arthritis and other chronic conditions, we have to start with our own.

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