FOOTLOOSE !

I think at one stage I was the Imelda Marcos of Kerry ! Shoes of all differing sizes and shapes littered our floor and all because of my RA/RD. Some of you will already know that I had to have both feet operated on and titanium implants inserted.
My trouble began when my increasingly sore left foot suddenly brought me to an abrupt halt with so much pain that I couldn’t walk on it. An Xray revealed that I had a broken metatarsel, but none of the doctors in Cork or Kerry would do anything about it and kept referring me back to my GP.   18 months passed and I still had the broken foot but had learned that it was as a result of my left knee replacement being botched the year before. In desperation my husband bought me some walking boots so I could at least hobble around and I decided to change my rheumatologist who didn’t seem to care in the slightest that I had a broken foot and so I picked the top rheumatologist in Dublin and she put me on to the top foot surgeon there. In fact she refused to treat me until I had seen him !  Progress at long last!
So it was first the left foot and this followed a year later by the right with my feet bolstered with wire and pins and titanium, some of which still remain in there ! But the outcome is brilliant – some two years later I can walk without pain and, more to the point, the swelling in my feet has gone down at long last !
During this three and a half years I had the problem (when not in a wheelchair) of what to put on my feet, or rather ‘foot’.  I had one two sizes larger than the other due to swelling and my foot surgeon saying that I should wear supportive shoes, preferably boots !  This meant me first of all wearing my husband’s boot on one foot and a completely different boot on the other and hoping that nobody would notice ! OK in winter, but as summer came on I was buying two pairs of identical runners, one for one foot and one for the other ! As the left foot got slowly better, the right one was going downhill and swelling ! So now I had another problem. I had the alternative boot/shoe to change them around, but the left foot was still a size larger than I had started off with………..so what to do but buy some shoes in the intermediate size. My shoe collection was expanding and in exasperation I confronted my lovely foot surgeon with my dilemma.
He said the answer for me was FITFLOPS (not flip-flops) sandals with rollerball technology and they are just about the most comfortable shoes I have ever worn.  Being sandals they took care of the difference in foot size and I was delighted to find that they had a huge selection, even glittery ones !  I’m not sure if you can get them in Australia but you certainly can in Europe and the USA and I have bought all mine on line, so its definitely worth a try ! Now some two years after my right foot operation I am walking along totally pain free.  My muscles are a touch sore after having to sit down for so long in a wheelchair, but I am walking a bit further every day and what is even better – both feet are at last the same size !!
The moral of this story is, if your feet are hurting you, go get something done about them. The answer is out there !

http://www.fitflop.com/en/womens/ for the USA

http://www.fitflop.eu/ for Europe

HAPPY PAIN-FREE WALKING TO YOU ALL !

CHAOTIC TIMES !

The last few weeks have been really busy here in SW Ireland. Pat has been away a lot doing courses in First Aid, Radio use, Survival and becoming a fully fledged boat Skipper – so as a result I have been holding the fort at home by myself.   After so many years of having Pat away for months at a time, I have come to appreciate these times spent on my own and had really forgotten what it’s like to do things at my own pace.   I eat when I want, sleep when I want (and when I don’t want due to sore limbs !) and can generally relax and de-stress.
When he got back armed with all his certificates, we then had a week of Total Panic Mode to get the boat ready for her final inspection by The Department of the Marine. Even though the Rosa is only 30 feet long, she has to pass all the surveillance of much larger passenger boats in order to get her licence. My son Jason (who built the Rosa) came over whilst Pat was away studying and carried out the many things we had to do to qualify – what a guy , thanks Jason!   Pat only got back the night before the inspection and thank goodness, we passed !!   So now we have the licence and have got the insurance for the passengers – all 3 of them !
This last week has been spent getting all the bits and pieces on board for our Fishing and Scenic Trips down to the last detail of sick bags for those who find the ups and downs a bit much to handle !   I went into Kenmare by myself and visited all the major hotels giving them our brochure and to friends who promised to put one up anyway!   I was absolutely shattered by the evening, but we wanted to be ready for the Holiday Weekend and so far, after all our efforts, we haven’t got one booking !  But its early days and I need to contact all the B&B’s and holiday cottages with a flyer, so times are busy!
What I should also mention also is that 2 week’s ago I started the Clint Paddison Program and I cannot stress enough that it is AMAZING !   I have lost 10 lbs in just 13 days by giving up all dairy and red meat and my pain and fatigue has gone from really bad to bearably sore.   The difference is very noticeable. AND I FEEL SO MUCH BETTER in myself and full of energy and good cheer that hasn’t been around for some time.    AND I’m out walking and enjoying the Spring sunshine !   So I am going to press on with the Program and will keep you updated.   I don’t suppose, in my 71st year, that I will ever get totally cured, but my scepticism is cast aside and I’m convinced now that a radical rethink of my diet is the answer to many of my symptoms.   AND I just love that cucumber and celery juice Clint !
I have to dash as we have friends coming to stay for a couple of days today, so I thought I would let you see our lovely Newfoundland Dory again – just in case you come visit South West Ireland anytime !

 

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The Rosa

 

 

RA/RD IN ALL SHAPES & SIZES !

I’m quite amazed by the discussion forum’s on internet websites such as rheumatoidarhritis.net and the size and complexity of the replies they get.  The advice and good-humoured response is well worth reading and questions come in from all parts of the world.  People with just RA/RD and those others who have multiple other diseases to cope with as well.  It makes me feel lucky, yes lucky to just have RA.
The one most interesting points I have gathered from reading these is that EVERYONE IS DIFFERENT.  Drugs that work for one person don’t work for another.  Rheumatologists come in excellent – good – poor and simply terrible!  I seem to spend lots of time saying ‘if you can’t get on or don’t get good results from your Rheumatologist’s advice – then CHANGE THEM ‘!  It took me several years and four changes to find the excellent one I have now and you should always bear in mind that you need to confide in them for the rest of your life so don’t put up with second best !
The next interesting point is the large variety of drugs that are out there and everybody seems to use a different combination from Biologics to NSAIDS to pain patches, thus emphasising my point that what works for one does not necessarily work for another. There is no set guarantee for any of them, but if you feel you are getting worse, then that is the time to insist on a change of medication from your Rheumatologist or to take an alternative route.  I find it very helpful to write down a list of symptoms over the six month period between visits to mine as a touch of ‘brain fog’ usually renders me totally speechless when I actually get to see her !
There are also the useless ‘cures’ that some joker puts in.  Delete them, they are not worth the trouble.  However recently I have noticed a few people mentioning the really good results they are getting by altering their diet.  Amongst others, I decided to have a go at the Clint Paddison Program.  He lives in Australia and had severe RA.  Seven years down the line he is now free of the symptoms and off all the drugs and has started a family!!  I decided it had to be worth a try and it can all be done on line.  So far no money has changed hands, but I expect it will further along.  I am getting an email from him every couple of days with how to start, which basically means giving up first milk and then all dairy products.  I’ve only been on it six days and already my sharp pains have reduced to aches which is great incentive for continuing.  I always thought I never drank much milk, but I had it on my muesli, in my tea and coffee and goodness knows what else !  I find it hard to credit, but it seems to work !  Quite frankly I am amazed how one’s diet can bring about such changes.  I appreciate its not going to be a quick fix, but any, and I mean any reduction in my pain level is worth the effort. If it can work on me aged 70, then all you young things should have no problem !!
I will give you an update in a few months along the line as to my progress.  In the meantime keep up with all the excellent information being discussed on line and why not put it a question, or an answer yourselves ?

 

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A PAIN IN THE WOTSIT !

 

OK so you have RA/RD or some other autoimmune disease and there’s no point in looking back.  You are here, at this point in time, and you have PAIN of one sort or another.  They come together like strawberries and cream, or rather more like slugs and snails moving from one point of your body to another.  Just as you think you are pain free, you try to get out of bed and back it all comes.
The trick, or the way to cope with it comes in all shapes and sizes and is different for everyone.  For some it may be drugs, diets or loosing weight, or heat pads or ice packs – it really doesn’t matter as long as it WORKS for you.  I’m going to bore you all and tell you what works for me starting at the top.
BRAIN FOG comes and goes and often I am told that I have totally ignored someone who was calling or waving to me.  But I am fixedly concentrating on getting from a to b and my vision tunnels down to what my brain is fixed on.  Sorry, but there it is !
My EYES have occasional blips.  I had my cataracts done and since then I occasionally see pretty circling prisms rotating around my vision.  What is slightly wrong is that they are still there if I close my eyes, so I told my Rheumatologist and she asked if I had seen an optician ?  No I haven’t and this is mainly because I now just take all strange things as part of my RD !  Maybe I should, but as they are always associated with a slight headache I just go to bed and count backwards !!
Pain in my HANDS drives me scatty !  I can no longer close a fist at all, so drop most things and it hurts, really hurts when I try to pick them up.  So I have a handy reacher in several rooms in the house as I can never remember where I put them!  I have compression gloves which help a lot in winter and wrist supports for when I drive, but the pain in trying to do most household chores leaves me unable to do more than one chore a day – sometimes not even that !  I used to love working in the garden and still can to a certain degree.  No, I can’t mow the grass or bend down far enough to weed, but I now have a long handled weed gripper that you push in over the weed, and rotate. Obviously it’s the ‘push’ and ‘rotate’ that limit me and if I try to work through the pain, then I pay for it the next day !  I find the best thing for sore hands and wrists is Arnica Oil which I massage in and which smells divine !!
My KNEES are a whole other subject !  One is OK and one is not. I had a knee replacement on it and now I can’t bend it and it hurts all the time, bearing in mind that I had it done in 2011 !!  I also had a HIP replacement in 2005 and that was successful though both hips twinge a lot during the day. But bearable !
My rotten hip replacement threw my FEET out of balance and I ended up walking around with a broken foot for 18 months.  Yes I went to the hospital several times and yes, they Xrayed it and said it was broken, but nobody wanted to fix it.  Walking on broken glass would be one way of nicely expressing the pain until I eventually went to a brilliant foot surgeon in Dublin (300 miles from where I live !) and he told me the great news that the other foot was breaking too. So he fixed the first one with titanium implants in 2014 and the other one in 2015.  So I was in a wheelchair and/or walking boots for 3 years !  But the pain endured is OK if you know it is going to be fixed and disappear – not the same thing at all with the rest of your body that can’t be fixed with an operation or drugs, or diets, or whatever.
And then, just for good measure your body throws in the FATIGUE.  Before I started on Humira in 2005 I was so exhausted that I had to go back to bed about an hour after getting up !  My Humira magic juice sorted that out to a great extent, but slowly and relentlessly the fatigue is creeping back ! I tell myself that its because I’m going to be 71 this year and I should be slowing down, but in reality I act like an ancient granny and just go to bed at 7.30pm, put my heat pad on where its hurting and watch TV from the prone position !!  If we have to go out of an evening, then I rest in the afternoon – that way I can make it to about 10pm.
I can’t remember back to when I didn’t have RD and life was normal, but as I said at the beginning of this article, if you have it then you are stuck with it and it’s up to you to make the best of your life in whatever way you can.  Filling your somewhat foggy mind with other thoughts and being determined to enjoy living to the fullest you can is definitely the answer.  Don’t moan about your lot in life, smile and do what you can. If nobody else notices it, then at least you will and also set yourself a tiny goal to achieve each day.  You can succeed against all the odds – well, I’m still here as living proof and I really like that !

 

 

 

THE CURIOUS CASE OF THE HEALING POWER OF EXPRESSIVE WRITING

 

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Whilst lying dozing in my bed at the end of my day listening to the radio (because of the effort of watching television at that time of night ) I was suddenly aware of the mention of Rheumatoid Disease on a BBC programme called “All in The Mind”, so dragged myself into a sitting position to better listen !
What I heard was amazing piece of research done recently with RA patients on the connections between the mind, the brain and the rest of the body which all appear to be linked. It may surprise you to know that Expressive Writing seems to relieve pain and alleviates other symptoms of this chronic condition.  Researchers believe that doing this Expressive Writing mitigates conscious and unconscious stresses that suppress the immune function and cause inflammation.  This was first discovered in the late 1980’s by Dr.James Pennebaker who revealed striking benefits on writing about trauma.
OK, so how do you and I go about this ? Pennebaker’s study has recently been updated by the University of Nottingham who gave two separate groups some pieces of paper and a pencil.  One group with RD and one group with asthma. Each group was then split into 2 halves. One half had to write about a really traumatic happening in their lives for 20 minutes each day over four days.  You just had to pour your heart out on either one particular traumatic event or four separate ones, not bothering to stop for punctuation, spelling or grammar. The other group had to write a diary of their day so far.  Then all of them were given a 4mm punch biopsy on their upper inner arm under anaesthetic and they were left to heal for 10 days.
The results were startling ! The group that did the Expressive Writing did not heal one day faster, not even two — they healed six times faster than the second group !!  The same result applied even if the biopsy was given before the expressive writing.
Further amazing results followed in that it didn’t matter if you wrote with a keyboard or spoke into a recorder and they found that it boosted thinking ability, improved working memory, reduced tension, pain and fatigue, enhanced sleep quality and mood quality and had a positive influence on the immune system function ! The group who just wrote a daily diary had no improvements at all.
Participants were checked at ten days, one month and four months. The asthma patients definitely responded faster than the ones with RD, but the effects on them all were really noticeable at four months .
So it would seem that writing about your darkest memories can have a huge effect on your immune system . It’s said that it’s like releasing a valve on a pressure cooker with all your negative memories and this somehow enhances the immune system.
The downside of this is the researchers are not sure how long the effect lasts, but there is no reason at all why you cannot repeat the experiment without the biopsy. Here is how to do it:

Day One & Two: Your writing should xplore your deepest emotions and thoughts by really letting go about the most traumatic emotions in your real life (and us RD patients have plenty of those to draw on !!).  You could link your writing to your future, who you would like to become or who you would like to be and why.
Day 3. You could write about the same trauma from another point of view or how this event changed your life and explore especially such deep issues as make you very vulnerable.
Day 4. Be really honest with yourself and try to say what actions you are taking to wrap up these events or to say how they will benefit you in the future.

THEN THROW THE FOUR PIECES OF PAPER AWAY !! Make sure you only write for 20 minutes over four consecutive days.

The bad news, apart from them not knowing how long he effects last, is that they are not sure how Expressive Writing has these effects on the immune system, but they are saying that they think if repeated it will not be any different to the outcomes above. Also journal writing is NOT the same as Expressive Writing. So if you are going to have surgery, or start a new medication, it might be worth while trying this over four days. Let me know how you get on !
(You can also get a Podcast of this BBC Radio 4 Programme on All in the Mind and by Googling Expressive Writing and RA)
I wonder if writing my Blog has any effect – but it does spur me on just in case !

ON THE UP AND UP !

Life, for once, is on the up and up ! Last week I had this brilliant idea (I thought) for doing a survey of RD Medications and treatments as there seem to be so many out there and received quite a good response – thanks Carla !  But it seems as though the various RA/RD organisations were not at all happy with me doing this.  I got threatened with everything from Data Protection to having my Blog taken down…….whoa !  So it seems it is not to be.  I got really mad for a while and said I would finish my Blog, but was talked down by Pat and various other friends and relatives, so bye-bye survey and back to the Galloping Grandma.
Having been really down and despondent, Life as usual rocked the other way by first Pat getting out of plaster and getting over his broken leg really quickly and also Cooper (our labrador) getting over his knee replacement really quickly – oh how I wish mine had been as fast !!  But he’s not supposed to bounce or run for another four weeks, but nobody seems to have told him that !!
As I write, Pat is way up country in Galway doing his Skipper’s course so I am left to fend for myself – something I did for many years whilst he worked away.  Getting the socks on and shoes laced took a bit of contortion, but I eventually managed it and tomorrow my son Jason will be over to start work on the boat again.
What we plan is to use The Rosa – a Newfoundland Dory, restored and rebuilt by Jason, to do scenic and fishing trips from our local harbour down the road on the Beara Peninsula.  We first have to get licensed by The Department of the Marine and with this licence we can get our insurance for the boat and passengers.  Firstly though we have to get the boat weighed and this has to be done when she is lifted out of the shed by a teleporter with special scales on it than can weigh up to five tons and then put carefully on to her boat trailer.  All being well we will then take her down to the slipway and launch her for her sea trials. She has been in the sea before, but she had a really ropey engine that kept cutting out and overheating, so I donated my ‘going to Australia’ fund to buy a new, reconditioned engine which should work wonderfully !  Fingers crossed and I shall keep you informed of her progress.

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The Rosa

 
The lovely Spring weather has helped lift my gloom and I am making the most of the Vitamin D provided by the sunshine.  Also I’ve heard from lots of friends who will be visiting us again this year and it will be great to see them all.  Whilst I really appreciate time on my own when I can go and lie down if needs be anytime I want, I really love seeing friends and finding out what they have all been up to, even though I get stressed and sore. It’s worth it !  We are not planning any holidays this year, but when you live in such a wonderful, scenic part of Ireland and right by the sea, it hardly seems worth the trouble !!  But I hope all of you will get planning what to do to spoil yourselves, be it with a holiday or just having friends visit and feel the rush of those positive endorphins. I certainly shall !

 

 

 

SPRING IS SPRUNG !

Here in SW Ireland it is suddenly Spring and the sun is shining down into all those corners where cobwebs lurk and muddy doggie paw prints adorn the floor ! The rescue cats, Roobarb & Custard are living off a diet of baby rabbits, or sitting below the bird table waiting for one to fall off !  Cooper our labrador has discovered the delights of any muddy puddle he can find and has taken to sitting down in the small pond we pass on our morning walk.  I think he likes the cold water effect on his poorly knee and this week on our way to get Pat out of plaster, we have to take Cooper to the vet first too have his knee replacement !  Nothing like having everything happen at once is there ?!
I have sneakily asked my son Mark to visit us from Germany for 10 days to help cope with Himself and the dog as I foresee lots of lifting coming up, so he flies in tomorrow to Kerry airport from Frankfurt Hahn and Mum here has to go and pick him up.  Also I suggested to Pat that he could probably hoover whilst sitting in the Power Chair and this has proved relatively successful, so much so that he combined it with dusting everything he could reach up to waist level – so we are halfway there !
The nicest thing I have to report is that my Word for iMac code eventually arrived and I achieved its ‘Easy Download’ after lots of swearing and pressing buttons.  I then shut my eyes, put in the pen drive with my book on and did lots of praying ! Much to my relief it downloaded, pictures and all,  so caught up in the Springtime fever I wrote an astonishing letter to a Publisher and posted it off ! We shall see how that transpires.
When I wrote my last book ( in 1989 and pre. RD diagnoses!! ) I had to do lots of TV, radio and other such promotions, including The Late Late Show, so it has slightly caused me to wonder how I would cope with all that and my RD – doesn’t bear thinking about !  Writing a book leads to all kinds of other work, sometimes even paid work !  I can distinctly remember being asked by the World Wildlife Fund to travel to the Shetland Islands to write an article on Otter Conservation, along with journalists from The Times, The Telegraph and several others ! I had to fly to London, then to Aberdeen and thence to the Shetlands in the middle of winter.  Luckily I had taken one of Pat’s survival suits with me so I was the only one properly dressed.  I just recorded the answers to the questions asked by the other journalists, so I managed to scrape by, though we never saw a sign of an otter, except a dead one that they took out of a freezer which was waiting transportation to Aberdeen University and looked nothing like the real thing.  How do I know that ? Well, we have otters in the stream at the bottom of our garden, though I never mentioned that at the time !! Happy Days !
My RD has taken a pounding over the last few weeks and in desperation I went to my GP and asked for help. He has slightly changed my medication (from Cataflam to Arcoxia) and the difference in pain levels is remarkable. I actually feel much less sore, though I am still on the Humira and Methotrexate.  I’m trying to rest for an hour each afternoon, but the advent of Spring has tempted me outside and I’ve now got a sore back from trying to do some weeding! Such is Life and I’m wondering if Mark will remember how to weed after living in Germany for so long – let’s hope so !!

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Our garden in Springtime !