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 !

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 !