Our reality is a reality that cannot be understood unless those that don’t have Rheumatoid Arthritis step into our lives just once and realize the true life of a person with this disease is one that words barely scratch the surface of. It is clearly much more than our own words can describe because our pain is a pain that is so deep, our emotions are bursting at the seams and the rest of our struggles are so rugged but our determination is unrelenting, still this disease offers us a battle of a lifetime. Others taking a moment to care about our struggles and realize our struggles will open their eyes and hearts to what we endure. But try as we may to explain this journey, it will never ever really be fully understood and this is unfortunate but it is our Reality. Continue reading “RA -Having Rheumatoid Arthritis-Reality Check”
Rheumatoid Arthritis, you are a Robber that has changed our lives. You sneaked in on us when we had no clue what was happening to our bodies. You came in and changed what we thought we knew about ourselves and has left us still working trying to figure you out. But this is what we know; What You’ve Taken:
You’ve taken us totally by surprise and you are so unforgiving
You’ve taken control of our lives and left us more confused than we ever thought possible
You’ve taken our lives and made it so difficult to maintain each day as we wake
You’ve taken the person I once saw in the mirror and left someone different staring back
You’ve taken our smile that once was so bright but now is a vague remembrance
You’ve taken away the shine in our eyes and left a sad and teary stare;
And you should know, You’ve taken away our joy and replaced it with sadness and wonder
You’ve taken away our laughter and now all we hear are our loud cries from pain
You’ve taken away our clear minds that we’re focusing so hard on getting back
You’ve taken away the hands that we cherished but now can hardly recognized
You’ve taken away our quick steps that have now slowed to such a sad pace
You’ve taken away our ability to do what many expect us to do;
It doesn’t stop there, You’ve taken our families and filled their heads with confusion
You’ve taken that confusion and used it to chase them away
You’ve taken our emotions to levels that are so high we can barely function
You’ve taken from us the love of knowing what a pain-free minute is truly like
You’ve taken our strength and saddled us with days of utter fatigue and we’re so tired
You’ve taken from us so much more than we can actually put into words
and for this, you are the enemy that we hate but will never be able to leave behind as you continue your task of taking from us.
While we battle this disease, the battle is bigger than anyone knows. We have lost more than words can say and for that, there truly are no words. As we try to get people to understand what this disease does, it is an ongoing struggle with a process that we can’t seem to make work. We are forever trying to make many see what our lives with RA is all about but as we go on, we still find that when it comes to breaking down that barrier of understanding, we are facing a brick wall that won’t be moved. We must come to terms with the fact that we will be fighting for understanding as long as we will be fighting this disease. It is now up to us to “walk away” without explanations and just let our understanding be for us and those who get it. What we have to sacrifice by having this disease leaves no room for unnecessary work since our strength is needed to fight our everyday struggles with it and not on senseless communication. By that I mean, our repeated attempts at trying to explain this disease. It is a shame when WE have to “lie, smile or walk away, pretend we didn’t hear or brush it off” just to keep our sanity while refusing to once again make an attempt at explaining we “DO NOT” have what you think we have and no it “DOES NOT” work the way you think it works.
We are the ones that suffer everyday whether we have visible signs or not. This disease is working just as hard whether it can or cannot be seen by you, I or anyone else. We are not to be judged but if you must, judge us not by what you cannot see because all that is wrong with us is not visible. We may look okay, smile okay and act okay but maybe crying inside from the pain that we’re enduring everyday of our lives. Chronic doesn’t always mean you’re unable to do anything. What people need to understand, because I may look on top of the world, doesn’t mean I can carry the world. MY LOOKS CAN BE VERY DECEIVING!!
The Truth Is, we have Rheumatoid Arthritis an auto immune disease
The truth is, it affects our entire body with pain that can’t be measured
The truth is, it is not a simple disease or a sometime disease
The truth is, it makes us hurt each and every day with unrelenting pain
The truth is, taking medication to fight this chronic disease isn’t an option
The truth is, finding the right one that works is a long worrisome process
The truth is, those medicines have side effects but don’t affect any one person the same;
But, Did You Know, by taking these medicines we will most likely change in some form or fashion
Did you know, those changes can be physical and/or emotional
Did you know, for those changes, the chances are very high there will be more medicines to take just for those changes
Did you know, contrary to what you thought,we are sure to still suffer with pain while taking medication;
But What I Want To Say To You, No, I am not weak, nor am I a whiner and neither am I a complainer
What I want to say, all that I know about Rheumatoid Arthritis is real because I live it daily
What I want to say, sometimes I hide from you and don’t talk for fear of sounding as if I’m repeating myself
What I want to say, I don’t think you are really listening to what I’m explaining to you
What I want to say, isolation is what I face more than I feel I should
What I want to say, I don’t feel I’m given a fair chance with this disease
What I want to say, I’m made to feel having this disease is my fault
What I want to say, I’m racked with guilt because of this disease;
It is true that we struggle so much with this disease each and every day and many don’t know how much we do. They do not understand what this disease is really all about and how important support is to us and without it we face isolation and loneliness. So why is it fighting this disease and those that don’t understand makes this whole thing the hardest thing that we have to deal with. We are missing so much of our lives and know there is no chance of getting it back even with the best medication because of the limitations that we face.
The fear of over doing is a real one. We want to do more but is so afraid to, these are some of the limitations. What kind of life is that? How can anyone be at peace with that. This is exactly what we face, sacrificing one in order to gain the other. It sounds like a game but it is not. We are worn out the majority of the time but when we are allowed by this disease to have a moment of pure peace, we pause. We rush or attempt to fill our time with all that’s been neglected but pay the price because our bodices give in to all that it has been put through and there we are once again back to what we are so familiar with.
This life is a life that none can understand unless you have stood in our shoes in an attempt to walk our long unforgiving path. You will not really know what we endure no matter how we cry out but by trying your best to take in our cries will at least be a start. Our pain is real and it is constant and this is something that may seem foreign to someone who has not known what chronic means and feels like. Without this, the true meaning gets lost so much of the time. This is where we have tried and tried to bridge the gap with understanding but that gap has not closed very much so we have come to the realization that we must let go of a fight that maybe fruitless and concentrate on one that has the name Rheumatoid Arthritis.
So for those that don’t and won’t understand, accept our smile with “we just don’t have time anymore” as we move on to take care of ourselves. The time is done for us working overtime trying over and over again to explain what we go through. What is known and should be accepted is what we endure is real and it is always. Now as we go forward, it is with hope that those we love not turn their backs on us but come with us on this journey. We have no extra strength to carry anyone but ourselves, so we cannot reach back to carry someone who does not want to come along.
Photo credit: glady/pixabay.com
Living with Rheumatoid Arthritis is a life that no one wants to live and we as sufferers would never wish our lives on anyone. Over and over again we have said that our disease is a chronic disease and it is an auto immune disease but those words and that definition seems to somehow get lost along the way. Still we live our lives with it and all that it throws at us while many seem confused about what we’re actually going through. Continue reading “RA – Rheumatoid Arthritis -What Do You Know-What Do You Believe”
Having Rheumatoid Arthritis is more frustrating to us than anything can be but adding to that frustration, the ups and downs of being on our medications. But life without them is one that I myself would find hard to give up. This is my choice and my opinion but how about you! Does taking the medication for Rheumatoid Arthritis have you confused? Are you ready to give it up to try something new? Is this an issue for you or are you willing to take the ride on the medication to the end wherever that may be. Continue reading “RA – Rheumatoid Arthritis Our Medication-Making The Choice”