Oh my goodness – I am having such trouble learning to blog ! Everyone has wonderfully designed blogs, and mine is not. I thought of seeking the help of a ‘Happiness Engineer’, but before one blinds me with science I have found a great guy who knows about WordPress blogging and he is going to come and give me a hand next week – so WATCH THIS SPACE (or should that be BLOG ?!)
I thought, in the meantime , I should give you a brief history of my RA. I was actually diagnosed in 2000, although looking back I probably had it long before then. I was feeling terrible, all aches and pains and entering that phase when you convince yourself that it is all psychosomatic and even my GP looked rather disappointed that his gout diagnosis proved negative ! Me ! Who only drinks about a glass of wine a week ! Undeterred, he took another armful of blood and tested me for everything. This brought about an instant diagnoses of Rheumatoid Arthritis — I was so relieved, I laughed out loud ! Now at last I had something solid to get hold of, to ‘Google’, to join RA clubs, etc. etc. My smile was somewhat diminished by learning that it was incurable, but there were lots of new drugs to keep it in check. For those that are in the know, I am on Humira (anti TNF) and Methotrexate.
Stage one was to get a Rheumatologist and my first one was a sweetie, but too old. He retired after taking care of me for about 8 years and then there followed a sorry list of not so good ones. I was determined to get one younger than me, so in theory he/she would outlast me. Eventually after a number of operations such as a new hip, having my gall-bladder out (?? ) which proved to be unnecessary after they had done the op and failed to notice that I had RA – despite the fact that I always give each doctor I see a large sheet of paper with Rheumatoid Arthritis written in large capital letters on it! Although I did have a few small stones in my gall bladder, I was ill with something called Costachondritis that affects RA patients., so had to go back to hospital for another week and be massaged twice a day by a real hunky physio !!
Next I was given a cream by yet another private skin doctor for my skin cancer that made my entire face swell up and upon reading the accompanying literature, it said quite clearly ‘Do not give to RA patients’. Where did the skin cancer come from I hear you ask – well not from the RA. Anybody of my age will know that protective sun creams were not invented when we were children. You got a good dollop of olive oil plastered all over you and were sent out to play (and cook) in the sunshine !! And yes, she got the letter stating I had RA too ! So the lesson to be learned from all of this is to keep repeating in a a loud clear voice that you have RA !
Next came the knee replacement – never go here if you don’t absolutely have to ! Mine was done by a doctor who had never done one before (I didn’t find out that till afterwards )and 21/2 YEARS later I found out it had been put in crookedly. The pain was excruciating and if it hadn’t been for my excellent GP and my husband, I really think I might have died at that point. And how did I find out it was crooked ? By first my left foot breaking and then my right. To top it all off, I was just sent home with a broken foot and nobody would tell me the truth of what caused it or fix it. Having talked it over with my husband after suffering a broken left foot for 18 months, we decided to go to the top person for feet in Ireland and, at the same time, change my Rheumatologist to the top one in Ireland too. Both of whom were up in Dublin. What a good decision that was ! As my foot had been broken for so long, it needed titanium plates putting in it and, he told me, the right one was about to break too ! So I eventually got home after the first op. with both feet in walking boots to keep my stance as even as possible. I was so delighted not to have a broken left foot, that I promptly tripped over my booted feet and broke my left wrist and my right shoulder. It was hard not to be very, very depressed ! Once I had recovered enough my darling, long-suffering husband sent me and my girlfriend over to Australia for five weeks to stay with my daughter in Far North Queensland and each day we walked a little further on 4 mile beach – I came home practically skipping ! The right foot broke on the second day of a trip to Greece to celebrate our 40th Wedding Anniversary. But by keeping it in strong , supportive fell boots and lots of pain killers, I managed to make it home and back to Dublin to have this next foot operated on. My surgeon warned me that this would be worse than the left one, and he wasn’t joking. Not from a pain point of view, but this foot was plated and wired together and it meant I couldn’t put it on the ground at all for 3 months. My first prolonged wheelchair experience ! But in fact I was lucky. My eldest son is a Joiner so he put in ramps all over the house and, as the Oil industry suddenly bottomed out, my husband was at home to look after me and become my live-in cook/housekeeper ! I had the op done in March 2015 and I am just about better with only swollen feet in the evenings, but able to walk a little more each day. Apart from the last 18 months, I still travelled down to meet up with my husband as flying is made so easy when the airlines realise you are disabled. I can’t go long-haul without a bed in Business Class, and I can manage on a boat with the help of a couple of strapping crew ! For the moment I am OK and getting better each day and any of you can do it too. I know I probably face a few more operations yet, but I refuse to give up and try and walk the dogs every day – except when it rains too much = this is SW Ireland after all! So back now to my Blog about how to travel with a disability, apart from being just over 70 !