SUMMER FUN !

First of all, I must apologise for taking the whole summer off from my Blog!
This was in a large part due to the last few blogs I wrote about me being on the Clint Paddison Program, combined with our launching The Rosa for sea fishing and scenic trips and in this blog I will endeavour to show you how one seriously influenced the other !

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The Rosa at the Pier in Kilmakilloge

We started the boat trips on 1st June (somewhat delayed by the Captain breaking his leg!) and almost immediately got some bookings, much to our delight ! What I hadn’t realised was the part I had to play in all of this. I had to fill the five gallon hot water flasks and the iced water and milk flasks each morning and then meet up with Pat at the pier each time he came in from fishing to restock anything needed.  Herb teas, biscuits, etc.  I was also Chief Booking Agent and having to take bookings at any time of the day or evening !  Plus, I had to distribute our brochure far and wide and do all the shopping, housework, etc. whilst Pat was out on the high seas !  With a round trip of 35 miles to the shops, this was no quick fix !

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Our passengers all had a great time and our local sea-eagles obliged by flying slowly overhead, whilst dolphins and whales were spotted in the bay.  We even had to order doggie lifejackets for the enterprising dogs that came out with their owners to bark at the seals basking on the rocks.  Every single passenger caught some fish – even ones as young as five ! (helped on the QT by Pat getting them hooked on the line !) and it was rewarding to hear their enthusiastic remarks on the trip.  From Kansas to China, they were a brilliant bunch of passengers !!

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A passing pilot whale

 

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Dolphins in a fishing frenzy !
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Our local sea eagle

It occurred to me as I was rushing around each day, just how loosing weight, having absolutely no pain or fatigue any more was enabling me to do things I never could have contemplated before. 17 years of constant RA/RD, non stop pain and fatigue had all gone in just a matter of weeks! I’m now 5 months down the line and am so enjoying my new found life.  Before, I had tended to stop at home all the time, having to rest each afternoon and found entertaining friends here at home a real struggle. Now, as Pat came in from his last trip of the day I would meet him down Helen’s pub (which is on the pier) and we would talk to the locals and tourists and often eat Helen’s delicious food.

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Helen’s Pub at Kilmakilloge

I made so many new friends, some of which live here all the time or have summer houses here and I would never have met them stopped at home ! Life was a lovely, sometimes chaotic rush and at the age of 71, I came through it all.  At the beginning of this month we brought the Rosa back up here so she can spend the winter in her barn and we can do any little jobs that need doing after her busy summer.
(You can find her on FaceBook at The Rosa, Sea Fishing & Scenic Tours).

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Coming home for the winter
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Rosa’s winter home

I managed to stick with Clint’sProgram as well. The pub soon learned that I was non-dairy and came up with some lovely crab salads and I stick to drinking tap water or an occasional black coffee. Now with time to myself again, I realise just how grateful I am to the Clint Paddison Program for giving me my life back! I may be a granny, but I am now a fit, active granny feeling on top of the world and really looking forward to the Rosa being back in the water at Kilmakilloge on the Wild Atlantic Way at Easter next year !

LIVING WITH CLINT PADDISON !

Good Morning to you all !   I’ve just sat down after cleaning the house, driving into town, doing all the shopping and picked up some nice fresh greens from my son’s garden – phew ! Exhausted, no sir !   I’m still fresh as a daisy, not a sign of fatigue and ready to do a little light gardening this afternoon !   I still can’t believe it – just this time at the end of May I couldn’t even have begun on that list of ‘to do’s’ and now here I am, a whole new person and, more importantly, pain free !
If you follow my Blog you will know that at the end of May I started on the Clint Paddison Program and was definitely the world’s greatest unbeliever in what you eat can change your life !  But after only a few days, I started to see results – quite amazing results !  So much so that I am still on the Program and have no intention of stopping !
Over the months as the Clint Paddison Program gets better known to all those of us who have RA, I have noticed on line there are many people, especially in the USA, who are sceptical about it, so I thought I would answer a few questions that I have seen:
–    “It’s just another fad diet”.  No it’s not.  It’s not a diet, it’s all about changing what you  eat.
–    “I’ve tried dairy-free and it doesn’t work”.  This makes me wonder just how dairy free you went.  Did you give up all kinds of milk, all kinds of yoghurt, ice cream and all kinds of cheese? And did you substitute them with greens?
–    “I can’t fit it in with my family meals”.  Why not, you can still cook as usual for the family and preparing a delicious salad for yourself can be done in a trice.  You don’t have to force them to eat what you eat, but they will definitely start wondering how and why you are loosing all that weight ! ( I’ve now lost 30 lbs !)
–    “I’m putting on so much weight on Prednisone”.  Of course you are, Prednisone is a steroid and should only be used for flares, not day in, day out.
–    “the Methotrexate hurts my stomach”. When I first got RA, the Rheumatologist put me on 30mgs a week ! Now, with the help of the Program I first went down to 25mgs, then 15mgs and am now on 7.5mgs and my Rheumatologist who could not argue with my seriously low blood results says I can come off it altogether when I see her next January ! It’s a nasty poison I can’t wait to get rid of !
–    “It’s hard giving up sugar and swapping sugary drinks for water”. Did you expect it to be easy…. ? You just have to train your body not to expect sugar and check every product you buy to see what it contains.   I have found some very surprising ingredients in things I had always assumed to be healthy !  Your Mantra should be, if I don’t know what it consists of, I won’t eat it.
Being grandparents with our offspring in various parts of the world, Pat and I like to entertain with informal suppers for our friends from time to time.  Does this present a problem ?  No not at all.  I make what I would normally make for guests, cook with oil and butters and just generally do as I always had done !  I make a salad in advance for myself and just tell them that I am now dairy free.  For deserts they don’t escape so lightly in that I might give them melon and raspberries or home made fruit salad – what could be nicer ?!   If we go out to friends, I just eat the vegetables, although several of them will have prepared something dairy free for me and they enjoy cooking it for a change !  A bit of fresh baked cod goes down a treat !
I have also found that our local restaurants in Kenmare react extremely well to being told that I am dairy free and will happily remove the feta from the salad or the cheese from the top of something.  My lovely husband. when he gets back from taking people out fishing on the boat, now really notices my weight loss and wants to loose weight himself.  I don’t tell him that he has been practically dairy free/sugar free for weeks – though stopping him having a glass or two of wine is a totally different matter !!
It all comes down to whether you think loosing all your pain is worth it ? In 17 years of RA, I’ve had about 3 pain free days.  Now, since starting the Program I am pain free.  I haven’t taken a pain killer of any sort since I began – which has got to be good for my body.  Sure I get yearnings for sweet things sometimes, but I just balance it up with what I’ve gained and whether or not I want to go back to how I was.  Surprisingly I don’t ! Living with Clint Paddison has to be the greatest game changer of my life !

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 !