I was so fed up with the whole situation that in October I decided to take this blog down. In anger.
I was very low.
Then in November I was lucky enough to take part in the Arthritis Ireland short course called 'Living With Arthritis' in South Galway.
It was wonderful to meet other people who had been through and who were going through the same or similar things as me. And I learnt how to feel more empowered to ask for what I wanted etc when seeing my GP and rheumatology consultant.
It's a very worthwhile course to attend for anyone with arthritis of any kind and at any level.
On December the 8th 2009 I had my next scheduled appointment in the HSE Merlin Park Rheumatology Clinic.
By some wonderful quirk of fate I was there on a day when the 'other' consultant (not my normal one) had his clinic (apparently they work a rota of clinic and wards between the 2 consultants).
This time I saw Dr Carey and a very thorough doctor working with him. I was treated as an individual, asked many many more questions etc than ever before, with exceptional manners and kindness, and was included in all discussions and decisions.
Dr Carey made a diagnosis of Osteoarthritis (which my previous consultant had already diagnosed), Rheumatoid Arthritis and Fibromyalgia. I was so relieved that someone at last was taking all my pain and difficulties into the picture and seriously. Despite the unpleasant diagnosis - it was a massive weight off my shoulders to know just exactly what is going on.
I have been prescribed Lyrica for the Fibromyalgia pain and Plaquenil for the RA. The Lyrica dose is fairly low and both will take a good while to take proper effect, so I will be patient and wait and see if I am lucky enough for them to work. I believe it is 4-6 months for the Plaquenil to take full effect, and a bit less for the Lyrica.
As soon as I start noticing a difference I will post it here.
I have since managed to be able to afford heating oil - so my house is toasty and I have hot water at last as myself and a friend fixed the airlock in the system.
I am taking a lot less Solpadol, partly because my GP doesn't like me taking it and that rubs off - I feel guilty taking it - and partly because it really barely makes a difference a lot of the time...
The pain and stiffness is therefore pretty bad still most of the time, and can at times be unbearable. I only take the Solpadol now when I can't sleep because it hurts too much, or if I am trying to work at something and the pain/stiffness has got too much and is stopping me doing the work.
The rest of the time I try and ignore it.... and I admit to being quite used to living with it now.
I still hate the pain though...
Showing posts with label My Experience of RA. Show all posts
Showing posts with label My Experience of RA. Show all posts
29 December 2009
19 October 2009
Pain Rant
This is a Pain Rant
A major Pain (and anger) rant
I have had a day from hell
Yet again
And I am 100% sick of it....
I ran out of my Solpadol painkillers this evening, which I feel guilty taking because it is always emphasised to me that they are addictive blah blah blah BLAH
Why the hell would I want to be addicted to something that barely makes a difference to me and my pain ? I've heard rumours that taking 60mg of codeine once will make you as high as a kite, let alone taking it 3 times a day....
All it does for me is SOMETIMES it takes the top edge off of the pain... and SOMETIMES it slightly relaxes the muscles...
And sometimes I would never know I'd taken it... so much for the wonderful euphoric effect
I wish !
So... I had 2 doses and then none for this evening... although the 2 lots I took today had hardly any effect. I have had a day of horrible pain and stiffness, and to make matters worse it was cold and I had to pay late bills instead of ordering heating oil with my meagre months salary (€300 for part time work) !
And another thing... I have apparently had arthritis for years as an adult (besides having Stills Disease as a child since I was 2), and now my spine is also affected seriously, why, at the very most, does my consultant only ever offer me NSAIDS ? Which he knows I can't take as my stomach is ********.
Why after several years seeing the same consultant do I not have a full diagnosis and and am not being treated specifically ?
A part of me says 'Girl YOU don't complain enough maybe'.... And then... at times... I even consider that maybe I'm imagining all this pain and inflammation and I'm not given the required drugs as I'm not ill enough to warrant them...
See how insidious the whole situation gets ?
All I know is I'm sick of IT.... Sick of the constant never ever ending pain and stiffness.... It's like living your whole life walking through MUD, and having PAIN walking through mud... Even opening a door hurts in the joints of my hand and in the arm muscles and in my shoulder...
I have to consciously consider and think about every single movement I make, and I can feel every single movement I make, feel it in every single muscle in my body. I have to consciously walk, it's no longer unconscious.
SO
Despite the fact that I can't even afford heating oil, or a plumber to fix the system and restore my hot water, I will scrimp and save and go without...
I am going to get an appointment with another consultant and if I'm lucky hopefully make life bearable again, because as it is I do nothing but struggle through pain and extreme exhaustion. I have almost no current quality of life.
Watch this space...
A major Pain (and anger) rant
I have had a day from hell
Yet again
And I am 100% sick of it....
I ran out of my Solpadol painkillers this evening, which I feel guilty taking because it is always emphasised to me that they are addictive blah blah blah BLAH
Why the hell would I want to be addicted to something that barely makes a difference to me and my pain ? I've heard rumours that taking 60mg of codeine once will make you as high as a kite, let alone taking it 3 times a day....
All it does for me is SOMETIMES it takes the top edge off of the pain... and SOMETIMES it slightly relaxes the muscles...
And sometimes I would never know I'd taken it... so much for the wonderful euphoric effect
I wish !
So... I had 2 doses and then none for this evening... although the 2 lots I took today had hardly any effect. I have had a day of horrible pain and stiffness, and to make matters worse it was cold and I had to pay late bills instead of ordering heating oil with my meagre months salary (€300 for part time work) !
And another thing... I have apparently had arthritis for years as an adult (besides having Stills Disease as a child since I was 2), and now my spine is also affected seriously, why, at the very most, does my consultant only ever offer me NSAIDS ? Which he knows I can't take as my stomach is ********.
Why after several years seeing the same consultant do I not have a full diagnosis and and am not being treated specifically ?
A part of me says 'Girl YOU don't complain enough maybe'.... And then... at times... I even consider that maybe I'm imagining all this pain and inflammation and I'm not given the required drugs as I'm not ill enough to warrant them...
See how insidious the whole situation gets ?
All I know is I'm sick of IT.... Sick of the constant never ever ending pain and stiffness.... It's like living your whole life walking through MUD, and having PAIN walking through mud... Even opening a door hurts in the joints of my hand and in the arm muscles and in my shoulder...
I have to consciously consider and think about every single movement I make, and I can feel every single movement I make, feel it in every single muscle in my body. I have to consciously walk, it's no longer unconscious.
SO
Despite the fact that I can't even afford heating oil, or a plumber to fix the system and restore my hot water, I will scrimp and save and go without...
I am going to get an appointment with another consultant and if I'm lucky hopefully make life bearable again, because as it is I do nothing but struggle through pain and extreme exhaustion. I have almost no current quality of life.
Watch this space...
25 August 2009
An Introduction To Me
I have had RA since I was 2 (Stills Disease). You would think that I would be used to it, and in some ways I am. However, it partially went away from about age 10 to my mid 30s and then re-appeared, slowly, insidiously and bit by bit eating into how I led my life.
It is now, as a 48 year old woman, that total acceptance is impossible. If I totally accept it then I am letting it have its wicked way. And as long as I fight it, it will never win. I feel very strongly about this, as positive thought begets positive action.
RA is an auto immune disease. This is where the body’s auto immune system attacks the body’s own tissues, in the case of RA primarily the joints and the tissues surrounding them, and in some cases other organs of the body.
Your immune system normally hunts down and then kills off all invaders in your body, such as infections and such. With an auto immune disease such as RA, it also attacks healthy tissue, creating the well known inflammation associated with RA.
In my mind Rheumatoid Arthritis should not have the word ‘arthritis’ in its name. It is a systemic illness involving other parts of the body, as well as the joints. In some quarters it is known as Rheumatoid Disease, and personally I prefer this. But that’s just me being awkward!
How it affects me
I have pain in almost all my joints, some a lot more severe that others, and to varying degrees. Sometimes certain joints are worse, and then another time it will be different joints that cause me the most annoyance.
I have pain in every muscle in my body. I literally hurt all over. They are also all ‘stiff’, and at its worse, it’s as if I have semi cramp all over. I assume this is caused by inflammation.
I don’t have the strength in my muscles I once had (and no it’s not old age!)
The constant severe inflammation in my wrists appears to have caused carpel tunnel syndrome in both hands.
Practically it means I can’t turn taps off properly. I have to lift a kettle or saucepan with 2 hands as I am liable to drop it (I don’t always have as tight a grip as my brain tells me that I do). I have to use my upper arms and shoulders to lift myself out of a bath (extremely painful as the RA is in them too of course). I can’t kneel down at all as the pain is unbearable. Stairs are a pain in the neck (and the knees and the rest of the body) as on a bad day I have to drag myself up via the banister. I have to lift myself off of and out of chairs, which is very painful. I can’t start my petrol lawnmower, chainsaw, brush-cutter etc anymore, (I have had to buy namby pamby electric or battery versions). I am often exhausted just sweeping one room, and then of course bending to use the dustpan and brush is extremely painful (which means I use avoidance and the house is not always as spick and span as it should be). And as for dating… what guy wants to date a woman who can barely do steps or stairs and who has to lift herself out of a chair in a restaurant !
Having said that, to the best of my ability I do not let it stop me doing anything. And I never will.
Additional Info - In early 2010 I was also diagnosed with Fibromyalgia, which explained a lot of the strange things I had been complaining of. It was also confirmed that I had some damage from Osteoarthritis, probably due to damage as a child, and the joints not wearing normally as an adult.
It is now, as a 48 year old woman, that total acceptance is impossible. If I totally accept it then I am letting it have its wicked way. And as long as I fight it, it will never win. I feel very strongly about this, as positive thought begets positive action.
RA is an auto immune disease. This is where the body’s auto immune system attacks the body’s own tissues, in the case of RA primarily the joints and the tissues surrounding them, and in some cases other organs of the body.
Your immune system normally hunts down and then kills off all invaders in your body, such as infections and such. With an auto immune disease such as RA, it also attacks healthy tissue, creating the well known inflammation associated with RA.
In my mind Rheumatoid Arthritis should not have the word ‘arthritis’ in its name. It is a systemic illness involving other parts of the body, as well as the joints. In some quarters it is known as Rheumatoid Disease, and personally I prefer this. But that’s just me being awkward!
How it affects me
I have pain in almost all my joints, some a lot more severe that others, and to varying degrees. Sometimes certain joints are worse, and then another time it will be different joints that cause me the most annoyance.
I have pain in every muscle in my body. I literally hurt all over. They are also all ‘stiff’, and at its worse, it’s as if I have semi cramp all over. I assume this is caused by inflammation.
I don’t have the strength in my muscles I once had (and no it’s not old age!)
The constant severe inflammation in my wrists appears to have caused carpel tunnel syndrome in both hands.
Practically it means I can’t turn taps off properly. I have to lift a kettle or saucepan with 2 hands as I am liable to drop it (I don’t always have as tight a grip as my brain tells me that I do). I have to use my upper arms and shoulders to lift myself out of a bath (extremely painful as the RA is in them too of course). I can’t kneel down at all as the pain is unbearable. Stairs are a pain in the neck (and the knees and the rest of the body) as on a bad day I have to drag myself up via the banister. I have to lift myself off of and out of chairs, which is very painful. I can’t start my petrol lawnmower, chainsaw, brush-cutter etc anymore, (I have had to buy namby pamby electric or battery versions). I am often exhausted just sweeping one room, and then of course bending to use the dustpan and brush is extremely painful (which means I use avoidance and the house is not always as spick and span as it should be). And as for dating… what guy wants to date a woman who can barely do steps or stairs and who has to lift herself out of a chair in a restaurant !
Having said that, to the best of my ability I do not let it stop me doing anything. And I never will.
Additional Info - In early 2010 I was also diagnosed with Fibromyalgia, which explained a lot of the strange things I had been complaining of. It was also confirmed that I had some damage from Osteoarthritis, probably due to damage as a child, and the joints not wearing normally as an adult.
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