There are some sick people out there – and I’m not talking about the ones with RA!

March 25, 2014 at 10:00 am | Posted in rheumatoid arthritis (RA) | 3 Comments
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I got this in my email yesterday morning, purporting to be from NICE (National Institute for Health and Care Excellence). 

 

Dear [email address removed] We have been sent a sample of your blood analysis for further research. During the complete blood count (CBC) we have revealed that white blood cells is very low, and unfortunately we have a suspicion of a cancer. Wite Blood cells 1200 Low Hemoglobin 12 Normal Platelets 19000 Low We suggest you to print out your CBC test results and interpretations in attachment below and visit your family doctor as soon as possible Sincerely,Dr. Avery Ernie National Institute for Health and Care Excellence

My first instinct was to laugh – for so many reasons. Honestly, can’t these spammers do their research properly? NICE doesn’t stand for that at all – and your average doctor can probably spell ‘white’ too. Then there’s the fact that NICE don’t do any research or analyse any samples. (All they are there for, as far as I can see, is to decide if drugs are too expensive for patients to benefit from!) Not to mention the fact that blood samples don’t go whizzing around the country for ‘further research’ without my permission, and when they do, since I’m part of an epidemiological study, they are anonymised. 

However, my second reaction was absolute fury – I presume the ‘attached’ was some sort of virus or other nasty, so what if this had gone to some really vulnerable person, not overly familiar with silly spamming tactics and actually awaiting the results of blood tests for possible cancer? The last thing someone in that situation needs is some moron to cause their computer to crash or steal their bank details or whatever other nasty things these people do these days!

I was reading this morning about medieval punishment practices;  a seller of off wine for instance would be hauled to the pillory, forced to drink a draft of his off wine and have the rest poured over his head before being locked in to the pillory  – most unpleasant – but too good for these people, I can’t help thinking! I shall be daydreaming of suitable ways to punish these people if they’re ever caught! <evil grin>

 

A day (or two) in my life with RA

March 23, 2014 at 9:58 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 19 Comments
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This post will be part of the Word Autoimmune Arthritis Day Blog Carnival. WAAD is May 19th 2014 but you can sign up for it now over at the site. This year’s theme is “A Day in the Life of an Autoimmune Arthritis Patient.” I hope I’m not cheating, but I’m going to describe two days – one just post diagnosis and one post-“control” where I am now!

4:00 am A day in March 2008

Wake up hurting – everything’s hurting. My neck and shoulders are very stiff, my back aches, my feet are killing me, one arm is numb and the other has pins and needles going from shoulder to finger-tips – but oddly only the little and ring finger.

Worry – a lot. Come on, I was diagnosed as ‘likely’ are in November last year, and definitely in February  – so how come it’s still not sorted. OMG, what if it never does get sorted? Am I going to end up a wheelchair? Will I cope? Will hubby cope?

And where the heck is that physio appointment they promised me months ago?

4:00 am A day in March 2014

Zzzzzzzzzzzzzzz…..

7:00 am March 2008

Wake up feeling completely un-refreshed and cursing myself for having spent an hour in the middle of the night worrying instead of sleeping. Worry some more as I creak my way gradually out of bed, gently testing bits of me to see how mobile they are. The relief of shaking off the pins and needles and then plunging my hands into warm water is enormous.

7:00 am March 2014

Wake up, blinking the ‘sleep’ out of my eyes. Slight stiffness. Hubby draws the curtains and says, ‘How’s the Penguin?’ ‘Stiff and achy,’ I reply, but then I realise that this is nothing to how it felt a few years ago, really NOTHING, and instantly feel a bit better.

7:30 am March 2008

Take a hydroxychloroquine and a diclofenac and wonder if they’re helping or not. I know I have to wait another couple of months to find out. It’s frustrating!

7:30 am March 2014

Take a hydroxychloroquine and an ‘arcoxia’ cox-2 inhibitor. I had to stop taking the diclofenac eventually after a nasty stomach upset – the arcoxia are supposed to much worse for the stomach, but so far don’t seem to be worrying mine!

8:00 am March 2008

The stiffness is just starting to think about wearing off. My left knee is very swollen and I hobble out to my car using a stick, to head off to work. I’m wondering how I’ll make it through a whole day!

8:00 am March 2014

Stiffness? What stiffness? Did I say I was stiff and achy this morning? Heavens! I’d forgotten. That wore off in about ten minutes.

9:00 am March 2008

Work  – chat to colleague – drink strong coffee – work some more. Try to remember to MOVE because otherwise I freeze into place and struggle to get out of my chair when I need to later.

9:00 am March 2014

Work – chat to colleagues – drink decaffeinated coffee (this change has nothing to do with the RA, but I have rosacea and the symptoms of that are drastically decreased by drinking only decaf coffee rather than ‘caffeinated’), work some more. Move when I want to – it’s not a particular issue any more.

12:00 pm March 2008

Strewth I’m stiff – I got a bit too involved in some interesting work and haven’t moved out of my chair for an hour. Now I’m in the embarrassing situation of needing a ‘comfort break’ rather urgently and thinking it’s going to take me five minutes to un-stiffen enough to get there!

Time for the next diclofenac. Oh no! I’ve left them at home! Mad dash home in the car to get one, and then back to work.

12:00 pm March 2014

Lunch time – get up, stretch a bit, possibly say ‘creak’, which makes my ‘Junior Penguin’ colleagues chuckle, but really I’m quite mobile. Grab a bit of lunch and go for a mile walk – I know it should be longer … and faster … but it’s about what I can manage comfortably in the time I can spare and my knees aren’t right, though much better than they were a few years ago.

Happily no lunch-time tablets any-more – as life-style changes go, this one has had a surprising amount of impact ! I’d really hate to have to go back to trying to remember lunch-time tablets again!

3:00 pm March 2008

Really wondering if I can last until five. If I was on my own I’d be out of here – but I’ve got an employee now and I feel I should set a good example so I stay.

3:00 pm March 2014

Wow – I love this job – time for a bit of a coffee break and then back to some really interesting transcription about language usage … followed, for a bit of a change, by some transcription about sheep diseases! Variety – that’s what I love!

5:00 pm March 2008

‘I’m tired and I wanna go home’ but we’re really busy and I’ve promised someone to get some work back to them this week – I’d better stay a bit longer, even though I feel soooooo tired and achy!

5:00 pm March 2014

I’m outa here – life’s too short! My way of working these days is to delegate or subcontract what I can’t fit in between 8am and 5pm Monday to Friday. I’ve got about 15 hobbies (and one hubby… and friends) and I want time to enjoy them all… especially as, let’s be honest, I don’t know how long I’ll be able to carry on with some of my hobbies, especially those involving a lot of walking or using my hands! I don’t feel negative about it though – things are going well at the moment and I’m making the most of my free time!

6:00 pm March 2008

Still at work.

6:00 pm March 2014

Just leaving a friend’s house. I’ve popped round for a post-work chat and coffee. Feeling pretty fine.

7:30 pm March 2008

Just about manage to get some supper on the table. I only arrived home half an hour ago so it’s ‘oven fish and chips’. 7.5g of methotrexate tonight, with another diclofenac, another hydroxychloroquine and a lansoprazole (stomach settling tablet).

7:30 pm March 2014

We’ve eaten already – I like to eat early and have the evening to play in – especially as I’m usually in bed by 9:00 pm these days – I find an early night makes a huge difference to my general well-being.

Tablets were 17.5g of methotrexate (yeah, it’s gone up a lot but I don’t care – it’s working, and there’s still room for it to go up a bit more … although I do worry sometimes about what happens if/when I’m up to 25g and there’s nowhere else to go  because my symptoms are too mild to get anti-TNFs etc. on the NHS!), and another hydroxychloroquine and a lansoprazole.

9:00 pm March 2008

Getting ready for bed – head still buzzing with what’s happening at work, worries about health, worries that I’m not finding time to do the things I love and speak to the people I love, worries, worries, worries. Heaven knows when I’ll get to sleep. Read a book for a bit to try to take my mind of it.

9:00 pm March 2014

In bed sipping a cup of decaf coffee that hubby’s just made me. Feeling satisfied that I’ve done a bit of Spanish ‘homework’ and managed quite a chunk of embroidery and a bit of crochet this evening, while watching an interesting documentary on the telly and discussing it with hubby later in some depth. Reading a good book on my iPad and feeling very relaxed.

10:00 pm March 2008

Oh no – I really don’t feel sleepy. I’ll read some more and try to relax. ‘Come on Penguin – light’s out’ says Hubby. ‘Just another five minutes’ I say, knowing he’ll be asleep in four and I can carry on reading!

10:00 pm March 2014

Zzzzzzzzzzzzzzzzzz…..

11:00 pm March 2008

Better put the light out. Toss, turn, toss, turn.

11:00 pm March 2014

Zzzzzzzzzzzzzzzzzz…

1:00 am March 2008

At last  … zzzzzzzzzzzz…..

1:00 am March 2014

Zzzzzzzzzzzz…

2:00 am March 2014

Wake up – stiff, in pain, pins and needles – wriggle about until I feel vaguely comfortable, lie awake for 20 minutes and eventually drift off to sleep.

2:00 am March 2014

Wake up – roll over – zzzzzzzzzzz…………….

And so another day starts in the life of Pollyanna Penguin …

My Day with RA

March 10, 2014 at 8:27 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 1 Comment
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This post will be part of the Word Autoimmune Arthritis Day Blog Carnival. WAAD is May 19th 2014 but you can sign up for it now over at the site. This year’s theme is “A Day in the Life of an Autoimmune Arthritis Patient.” My previous post on this is here.

As I said in my previous post, these days RA doesn’t have such a huge impact on my life. In fact I almost feel a fraud posting about it, but there are some little things, and some equally small hints and tips on coping with them, that I can post about.

Other than making sure I take my medication really regularly, I don’t have to do an awful lot to manage my RA but one of the most important things I do is wear orthotic insoles in my shoes. It certainly helps being married to a chiropodist! These insoles have made a massive difference to me over the years. They’re now just a part of life, but if I do have occasion to wear ‘fancy’ shoes or, as I did yesterday, wander downstairs with bare feet without thinking, I soon know about it – and not in a good way! I had painful feet for years before diagnosis whenever I spent a bit of time walking about, and I just assumed it was the pain everyone had when they said ‘Ooh, it’s good to take the weight off your feet!’ It didn’t dawn on me for ages that when I took the weight off my feet they still hurt, and other people’s didn’t!

Another little tip is warm water – warm water is a wonderful thing if your hands are stiff first thing in the morning! I rarely get significant morning stiffness but if I do, plunging my hands into a sink full of lovely warm water really does help. (Hubby will read this and suggest I should do more washing up, I dare say!)

The other major effect RA has on me, and the most difficult one of all to get through to people who don’t understand the disease (including family, doctors, family who are doctors …) is the fatigue! This really is a big problem and the only way I can deal with it is to pace myself and try to keep to a boring routine of early nights and early mornings. (Obviously if late mornings are an option for you, that’s fine – they aren’t for me as I work full time.) People always pull faces and think I’m making excuses when I’m being a party pooper at 9 pm … and maybe they’re right as I’ve never been a fan of parties … but really, an early night and a good sleep makes all the difference to me.

The final thing is flares – even though my arthritis is mild and controlled I still get flares. They’re a fact of life. The hardest thing is to remind myself during a flare that it may seem like a dark tunnel but there IS light at the end of it. It’s ridiculous – every time I have a flare I feel as though THIS IS IT and things will never be right again. After seven years since diagnosis and quite a few flares you’d think I’d be over this but I’ve spoken to other RA sufferers and people who have other diseases that also flare and die down, and many seem to go through the same thing. It’s not sensible but I haven’t yet found a way to avoid it! So if anyone would like to offer me a hint or tip on this, it would be appreciated!  :-)

 

 

 

Paracetamol (Tylenol) has a cumulative effect – heck, why didn’t I know that?

March 6, 2014 at 1:28 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, Me, rheumatoid arthritis (RA) | 4 Comments
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I woke up this morning and said to hubby, ‘Yay! Good news! I didn’t need to take any paracetamol last night and I don’t need them this morning either! Isn’t that great.’ He agreed it was great. (He’s nice like that.) 11 am today and I was STILL feeling fine – hurrah, I thought, this dratted flare is finally over. Then, out of the blue, bam, agonising stabbing pains in my ankle. Then the light dawned – oh dear – I bet paracetamol has a cumulative effect.

I’m a bit of an idiot really. I KNEW it had a cumulative effect from the point of view of overdosing, and if has that then it’s likely to have a cumulative effect for pain too I suppose! Feeling a bit silly now!

Anyway, there’s a fascinating article here by Dr Chris More, a fibromyalgia sufferer her/himself (doesn’t specify gender on site, so far as I can see!) Actually, I’ve had a wee browse around the site and I think it’s a great resource for anyone with pain issues, not just fibromyalgia sufferers, so I will be adding it to my blogroll too!

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