First of all, sorry for there being no Blog last Sunday, but depression got the better of me and last Sunday I just couldn’t write ! Last Thursday I had to drive Cooper, our labrador, to the vet to have his knee replacement and straight from there onwards to Cork to get the hubby taken out of plaster for his broken leg ! Then drive all the way home, where despite my warnings Pat did too much on his foot and it all swelled up like a balloon !! So it was on with the ice packs and into bed with his foot elevated and suitable pain killers ! Cooper’s op went well and my son and I picked him up 4 days later and he is now crashing into everything (including the back of my legs) wearing a sort of plastic lampshade. Then the cat came in limping which was the final straw and I was not in the mood for writing !
However I have not been idle as over the past few days I have been astounded at the amount of treatments and symptoms I have read about for R.D. on Facebook. There seem to be no two the same and the amount of daily steroids given in the USA as treatment leaves me bewildered.
So much so that I have decided to compile a list of treatments for the many and varied medications given for RD and the after effects (good or bad) for each one.
I would very much like each of you to contribute to my survey. Just let me know which medication you take, how often and how you react to it. Especially if you have changed medication and how often since being diagnosed ?
I think that if we knew of alternative treatments that there are out there, it would help when we see our Rheumatologist, especially if we are having a bad reaction or strange side effects of the drugs we are on. Knowledge is the key to getting the best treatment for our R.D.
You can email me direct at email@example.com or contact me through my WordPress site at http://www.thegallopinggrandma.com
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 !!
First a little background. I have moderate to severe Rheumatoid Disease. For my European friends who still call it Rheumatoid Arthritis, I am from now on deferring to our American cousins who have got fed up with the word ‘Arthritis’ and people automatically assuming that is all you have. For those new to my Blog, RD is an autoimmune disease that is incurable and affects many organs in your body apart from just joints. The drugs that are available for it have absolutely no effect on ‘arthritis’ and have varying effects on the chronic pain and severe fatigue that come as added extras to Rheumatoid Disease.
Next – I live on the Beara Peninsula in the far SW of Ireland. My nearest neighbour is about quarter of a mile away. We have beautiful mountains around us, clean air and dark skies and are about half a mile from the sea – the Atlantic Ocean, next stop USA ! So, sparsely populated, so much so that I know no-one else who has RD around here. Hence the Blog which has had the marvellous effect of linking me to the rest of the world and thousands of people who also have RD – so I am no longer alone from that point of view. I live here with my retired ex-Drilling Superintendent husband and although it is now two years since my last operation on my right foot, he looked after me wonderfully till 4 week’s ago.
Crisis time ! He slipped and fell in the garden and broke his ankle, so my first very abrupt job was to drive him to hospital, after not having driven for 2 years ! Worst of all was parking by the hospital in the very busy car parks, but it does come back like riding a bicycle and we did the 160 mile return journey without too many scary moments ! He was plastered and put on crutches and told not to put his foot down for six weeks, so in a trice I became the carer instead of the cared for !
I can only walk about a quarter mile, but we have two dogs who needed walking, so it was out with my Quingo into the pouring rain, which I actually rather enjoyed ! This was after having to wake up in the morning, get tea and let the dogs out and then make breakfast. Help Pat dress and get him to the breakfast table. Anyone who has spent time on two crutches will know that it means you are unable to carry anything, so I became the Fetcher and Carrier. The house had to be cleaned so I dusted off my I-Robot Roomba and put my tired self into cooking lunch mode whilst it zoomed around hoovering the floors. Seeing it whizzing around reminded me that I had a Power Chair in the garage, so my son was called over and he got it working again for his Dad who was delighted at now being able to get around the house without the crutches and, in all fairness this made him very useful for all jobs involving bending from the waist – something that gives me alarming backache ! So he was put in charge of the washing and tumble drying, setting the table and at this very moment is cleaning all the cupboard fronts in our Kitchen that haven’t received such attention in years !! So not all bad.
Afternoons are spent shopping and Pat wants to come, even though he has to sit in the car whilst I shop ! (I did this for eight years during and after various operations). I can push the shopping trolley just fine and put the stuff from the trolley into the car, but getting home is a whole new game! in that I cannot carry anything heavier than a handbag without my wrists collapsing. The remedy for this was first to get Pat safely out the car and into the house, then go back to the car with a barrel trolley that I found in the garden shed and which I can push as far as the kitchen door loaded with the shopping. Then unload it slowly and get Pat to put anything away in places he can reach. I do the rest. Next comes preparing dinner ( how I would love a Cook/Housekeeper right now ! ) I actually love to cook, but when it has to be done every single day, it’s exhausting ! During the years when Pat worked away all over the world, I spent long months on my own pre and post op. I was very careful to only confine myself to a couple of rooms, eat ready prepared meals and sit in my chair and watch telly in the evenings. Now I have to feed dogs and cats, let them in and out the door (how I would love a Doorman too !) cook and serve dinner, clean up, load the dishwasher lock up and sink exhausted into bed. My knees, hips, hands and wrists ache and my walking speed is reduced to a crawl!
On the bright side, he only has two more weeks to go and then back to Cork for walking boots so I am just hoping he gets used to them very very quickly ! Also I have come to realise just exactly how much he was doing for me before the crisis occurred – but I am secretly longing to just be able to throw myself into my bed for an afternoon rest – what luxury that will be !!
Here I am, at last, late again for publishing my Blog – for which, many apologies. I really have had the most hectic week with Himself in plaster and whizzing about in my Power Chair and generally improving, so I decided that the moment had come to get my second book “Butterfly Summer” out to some publishers.
It was sitting, almost finished except for the index, on my old IMac in a publishing file called IWeb. Never heard of that – well, neither had Apple ! I actually started writing it in 2005 and finished it (almost) in 2006, just before I got my Hip Replacement. This and following numerous operations for my Rheumatoid Arthritis took up the next ten years of my life and were not conducive to writing books ! So now I am two years after my last foot operation and getting on with my Blog, I thought to myself “why not finish it” and get it out to some publishers ? Little did I know that in the intervening years, Apple had got rid of IWeb and not replaced it with anything else. The app only gives you the choice of putting it on line (which has now gone!) or publishing it to a folder. Hooray I thought, I’ll do that. A million (slight exaggeration ) tries later, I still could not get it to move the files and the photos – of which there are many – to a flash drive so as to put it on my new IMac for final editing.
These attempts, (combined with much swearing and cursing), eventually worked, but I tried so often that I can’t remember how I did eventually do it !! So then I put the flash drive into my new iMac and it put all the words in a sort of porridge-like confusion into Pages, with no photos, of course !
What to do ? My new IMac doesn’t have Microsoft Word for Mac which the old computer did have and which I had managed to put the contents of the flash drive on. So I rang up Apple and ordered the new Microsoft Word for Mac for €150 and they told me the relevant download codes would be emailed to me. Wonderful, I thought. No email arrived, but a Shipping Order to say they had shipped it to me. Why ship a code which will take at least a week, when it could be emailed I asked another kindly soul at Apple through gritted teeth ? Well, it’s because it’s Microsoft and Apple don’t like each other and refuse to email it apparently, so I still haven’t got the download codes as I’m waiting for UPS to deliver them – though it has got as far as Dublin they tell me ……… only another 300 miles to go !!
So with all this going on I didn’t write my Blog. I didn’t even finish writing the index to my book as I can’t be bothered to try and remember how to put it on the flash drive….. who needs an index anyway ? I’m downhearted and fed up with the whole shooting match and I still have to find all the photos and download them separately on to my flash drive…Gggrrrrrrrrrrrrrrrrrr !
Mind you it has taken my mind off my RA which is a plus !
Hopefully back to normal next week……..
Over recent months I have found it very interesting reading your Blogs from all over the world and to compare treatment of RA between countries. It’s quite amazing how it differs, but our problems all end up with much the same results. We all have pain to a greater or lesser (for the fortunate ones ) degree which comes with its accompanying sleeplessness. Our hands and feet hurt, we can’t do up our buttons or zips and our bad language expands accordingly ! There was a time when I just used to mutter to myself, but now I find that I can curse and swear like a navvy!
The biggest problem we all seem to have is weight gain – yes I have to admit that in my youth I dieted with the best of them, and really rather hoped for a small wasting disease that would come and go and leave me supple and willowy and beautiful, of course ! Then, of late, I hoped that with advancing years would come a matching weight loss from being ‘older’. Now I read that people who loose weight in old age are probably in need of a medical check up rather than a new wardrobe !
So what did I get ? I got RA for my sins and 10+ years of being operated on. First my hip replacement in 2005, followed by Costachondritis and a Knee Arthroscopy which, of course, made my knee much worse so that it had to be replaced in 2011. The in between years were filled with such joys as a Gallbladder operation (when they never considered Costachondritis, despite the fact that I told them repeatedly that I had RA)and several bouts of skin cancer courtesy of the Methotrexate I was on ! My knee operation was botched forcing me, yet again, to take to my wheelchair and when I did eventually stagger up and try and walk in a suave sophisticated manner, my foot broke from the uneven weight put on it. I kept going to the hospitals and X-ray Units and yes, they told me, its broken – but nobody would touch it. So for one and a half years I had a broken foot and it took me this length of time to find a brilliant foot specialist who fixed it for me with titanium implants and broke the news to me that the other foot was breaking too. In between my recovery I tripped over my own feet (foot?) and broke my shoulder and my wrist, had my cataracts removed so I could see where I was not going and then had the second foot done in 2015. I spent endless hours in bed and in a wheelchair and instead of wasting away, I ‘comfort’ ate anything I could get my greedy hands on! I also was given a lot of steroids to help the inevitable flare-ups and I found that these gave me a craving for all things sweet, so when the end finally came in sight (with just a wee touch more of skin cancer and a blood clot from sitting down so much), I emerged rather pear-shaped from the whole experience !
Over here in Ireland one only gets steroids if your flare up is massive. I get Biologics and Methotrexate, plus a load of tablets to stem the side effects from what they first gave you ! I can walk, but not very far and not very fast – so am unlikely to loose weight this way ! I really try to stick to a Mediterranean diet, but can often be found sneaking out to the fridge in the middle of the night for just a square of dark chocolate, which really wont do me any harm, will it ??!
The worst side effect of taking Humira is that it made me dislike wine (tastes funny) and spirits are just a No-No. I have gone off red meat to the point of almost becoming a vegetarian, which has to be good, isn’t it, and I have given all of the above a really good try, especially the wine! Alas, to no effect – I’m still pear shaped and this year I shall be 71. Is it worth me now becoming lithe and willowy or should I just give in gracefully ? I leave that conundrum up to you !
This Blog was supposed to go out on Sunday, but I was absolutely wrecked after running around looking after my husband Pat and his broken ankle ! However since then my lovely son Jason has come over and put the ramps back in (that he took out about a year after my last foot operation) and now Pat can use my Power Chair and get all around the house at great speed !
I managed the driving up and back to Cork University Hospital with only a few short intakes of breath at the sudden amount of traffic compared to here on the Beara where we don’t even have traffic lights ! It was a surprisingly quick visit seeing as how Pat had to be X-rayed twice and see the doctor twice, but he is now in a huge fibreglass cast with cold toes ! I managed to find some old walking boot socks which fit fine, so another problem solved ! We even got our hair cut and visited Griffins Garden Centre which has a very helpful wheelchair that he could push himself !
I must say I had not realised just how much he was doing for me before and my attempts at being Superwoman have just resulted in immense fatigue on my part – so now with the help of the Power Chair we can spread the tasks out between us and all I need is for it to stop raining so that he can take over walking the dogs with my Quingo !
Again, I must apologise for this being such a short blog, but I hope to return this coming weekend bright eyed and bushy tailed !!
Take care all of you……….and don’t slip !
I’m not sure if it is pretty standard for every husband of an R.A. sufferer to be constantly issuing words of warning to their wives. Such as ‘don’t walk too far’, ‘be careful with that knife’ and ‘watch that you don’t slip’, etc. etc. My loved one is always at it or maybe I just need holding back (!), so it was with some touch of glee on my part that he went outside on Wednesday afternoon and fell ass-over-tits in the mud !!
The first I knew about it was a plaintive cry from the kitchen to come and look at his foot, which admittedly did look a bit swollen. Like every man he refused point blank to go to the doctor, so I put a compression bandage on it and an ice pack and it was agreed that if it was still bad in the morning we would seek medical assistance then.
Morning brought a weary and tetchy husband who had been awake most of the night feeling sore so we set off to drive the 70 mile round trip to Bantry and its new Accident Unit.
I will digress slightly here as you may remember from my last Blog that I had slightly slipped a disc in my back that weekend and was really sore. Luckily by mid week I was feeling a bit better so it was up to me to drive to Bantry and back. Me, who hasn’t been allowed to drive more than a couple of miles since my last foot operation two year’s ago ! The road to Bantry from us goes winding up and over 1000 feet through the Healy Pass, plunging down to the sea the other side of the peninsula and eventually links up with a main road from Glengarrif to Bantry and we made it to the hospital with no more exciting events – in fact I think I drove rather well !
The new Accident Unit at the hospital is very nice indeed. Small but adequate and ultra efficient. Pat was taken off to Xray upon arriving and the doctor pronounced that he had not one, but two broken bones in his foot and the possibility of a torn ligament. He expertly put a light plaster on it and made an appointment for Pat to go to the Fracture Clinic at Cork University Hospital this coming Thursday as they have no MRI machine at Bantry. So he was put in a wheelchair and taken back to the car and home we came again.
So now we were suddenly presented with a whole change of precedents. The carer had become the patient and the patient had become the carer – and, of course, the cook/housekeeper/dog walker as well. Luckily I still have my Quingo and can walk the dogs using that. In fact I rather enjoy getting out on it and going to places my useless legs won’t walk to! Cooking I can manage blindfolded, though I must admit it has been rather nice having someone doing all the cooking for me over the last two years, but housework I find exhausting and am ready to go and lie down after ten minutes of hoovering!
So I’m finding out now just how well Pat has been looking after me and I fear he rather expects me to reciprocate ! On day 2 he was ‘bored’ with sitting around and my offer to let him use my painting gear was met with derision, so how does one entertain a man who is forced to sit still and where do I find the energy from to become Superwoman ??
I am so looking forward to the 180 mile round trip to Cork on Thursday and sitting around in the Fracture Clinic for hours on end – I don’t think ! So I have made myself a hair appointment and shall probably need just a touch of retail therapy to get my legs moving again before the return journey, so maybe all is not lost after all, though I wonder if I too shall resort to words of warning over the next few weeks in my new role as carer !!