I have joined a few support forums and started a blog to help myself cope with the changes I am going to be making, and have made so far. I feel like I am doing a TERRIBLE job of handling all of this on my own. I was browsing around one of the facebook pages I have joined, and found this. It is nothing short of amazing. (Besides the grammar and punctuation, but I forgave him for that)
This post is for people who don’t understand what having RA can mean to somebody, when I was diagnosed with Rheumatoid Arthritis quite a few years ago now, at the time the doctor was looking at the possibilities of me having RA or Gout, not really knowing anything about RA I wished that’s what it would be and not gout, the more I learn (I’m still learning about RA almost 17 years on) how wrong was I to wish for RA !!! Even by people who have this awful disease me included don’t realise just how serious it is and what the implications are of having this disease are. Its much much more than a few aches and pains that old people get. RA as we know is a disease of the immune system to which there is no cure, in simple terms the immune system goes haywire and instead of repairing your body and fighting illness and infection, it attacks your body, primarily your joints. It can also attack your muscles and internal organs of your body, keep in mind your heart is a muscle in some cases it can be affected, I had a friend who has quite aggresive RA mention today she is getting a lot of chest pain and fears it may be affecting her heart. In the early stages of RA Rheumatologist’s will be quite aggressive in the treatment of RA, the idea is to try and stop it in its tracks and force the disease into remission, this strategy works well sometimes, its needed to get on top of the disease quickly because it can cause severe deformities of your joints rendering the joints almost useless then.
Whilst the disease itself is not life threatening, if you have RA there will be lots of changes in your life which you have no control over, things like what you do for work there will be changes there or even your job you may no longer be capable of doing it, so could be a career change. Chronic fatigue often comes with RA, feel tired all the time and no energy or will to do anything much, pain levels can be off the scale from anything you have ever known its a very unique pain with RA very different from anything you have ever known in your life. Because the disease mess’s with your immune system you will be vulnerable to infection, colds, flu, your body no longer has the ability to fight of infections and illness like it used to, this is just a few things how RA can affect you.
Then we come to side effects of the meds, the medications used to treat this disease are quite serious and toxic drugs and can have serious side effects, you have to weigh up what would your quality of life be like with the meds, and what would it be like without the meds. Side effects will vary on all meds from one person to another, I take MTX and Sulphasalazine if you take tablet form of MTX its taken usually once a week (its a chemotherapy drug as well for cancer treatment) , the side effects from those are, sensitivity to direct sun, thinning hair, nausea after taking the med for a day or two (this can vary for all of us) the MTX actually damages your liver and it takes the rest of the week to repair itself, It mess’s with your blood cell count and you will bruise much easier, mouth ulcers, there are more side effects but I hope what I’ve mentioned is enough to realise its quite a serious drug and should not be taken lightly the fact you are on it. The other drugs I don’t know much about other than the names of them and they also are quite serious medications with serious side effects.
I hope what I’ve mentioned is enough so people realise RA is a very serious disease, its a lifelong disease to which there is no cure and anybody who has this disease will be faced with some quite challenging times in their life, lots of changes from the life they thought they where going to have, you will have limitations on pretty much everything you do in your life, take some quite serious and toxic medication, without the meds your quality of life will be dreadful, please don’t go trying alternative type treatments without talking with your Doctor in great detail first. The medications your doctor will give you have been rigorously trialed and tested and what the doctor reccomends he or she is very educated in knowing what will be most suited for you. There will be lots of pain, tears, emotions, and many more things you will never have dreamed happening to you, you will need lots of love, support, and help from close family and friends. There will be bad days and good days remember the good days and use that memory to get you through the bad days, laugh and enjoy life as much as you can, and get into some online support groups.
Take Care and be kind to yourself, this will be the toughest journey of your life, but you will come through it, Andrew