RA AND THE FAMILY FIT

Are you longing for those days when you were able to do things without limitations or do you wish you could at least do some of what you once could.  You watch as this Disease take away the person you once were with the help from the Medication designed to make your life better.  Here begins the battle between Rheumatoid Arthritis and our Medication and our fight to be the best we can in this battle between them. Continue reading “RA – Caught Between The Fight of Rheumatoid Arthritis and Our Medication” →

Rheumatoid Arthritis;  We as sufferers hear it more than we like too but those we wish understood it don’t hear it enough.  We feel its pain more than we want while others don’t understand our pain enough.  This is our Rocky Road with Rheumatoid Arthritis. So Where Do We Turn?

Where Do We Turn when our pain has gotten the best of us
Where Do We Turn when that pain keeps on getting the best of us
Where Do We Turn when all of our medicines fail to end this pain that just won’t leave us alone
Where Do We Turn when our options to get better seems to be fading away
Where Do We Turn when we have so much to do but our bodies just can’t stand up to the task;

We know you are there

So Can We Turn To You when we have to look at ourselves and face what so many refuse to see “We Are Sick” with a Disease that stops our mind and body from responding to what our heart wants us to do
So Can We Turn To You when we try with all that we have to be strong but find that our strength has slipped away right before our eyes
So Can We Turn To You when our words to all feel like they’re spoken in a language that no one seems to understand
So Can We Turn To You when we are forced to play down the controlling effects of Rheumatoid Arthritis
So Can We Turn To You when we open our mouths to speak but swallow our words because the truth about what we’re enduring may seem impossible in the eyes of many

Still we want to know

Can We Count On You when we’re made to feel like our truths about Rheumatoid Arthritis are just cries of pity and selfishness
Can We Count On You as we face this Monster all alone as many in our circle walk away from the load they fear is just too much to carry
Can We Count On You when we realize our world is full but RA makes us feel empty and lost
Can We Count On You as we cry those endless tears of frustration, sadness and loneliness
Can We Count On You because others that we thought we could depend on has slowly isolated us because of their own misunderstanding of Rheumatoid Arthritis;

Our lives are full of needs for so many things.  Our need for understanding, support, to be pain-free, to find medication that works, rest for our minds and above all strength to handle it all.  These are just some of what we need in our lives and some of what we are fighting so hard for.  But who can we really turn to and who can we really count on to help us through our struggles and our fight with Rheumatoid Arthritis.  As it stands, we are faced with so many difficulties not only brought on by this disease but the stigma of What It Is Interpreted To Be By Others.  We fight with all of our might just to make it one day to the next but it seems that Understanding has its own place in our battle.

I say it again and again, no one understands the gravity of this disease.  As we reach out to others for support and understanding, it is not for selfish reasons, nor is it for pity but nothing more than what we really need.  The more we all understand this disease the better it is for everyone involved.  They ask, we answer, we talk, they listen, they talk, we listen and this is how it should start.  That is what it should be about and how the understanding should start.  So, understanding that RA is one of the most devastating diseases that I as a sufferer can tell you about is the truth.  Again, because we look okay doesn’t mean we are okay.  Having someone in our lives that understand what that means  and being someone we can count on is one thing that will make this just a little bit more tolerable.  So as we turn to you, look into our eyes and see our truth:  What We Have Is Real And It Is Devastating.

Rheumatoid Arthritis makes you sick, it makes you sad and it makes life lonely.  Don’t let us go down this rough road alone.  These are not cries for anything other than what they are, our cries to be heard.  Don’t let these 2 words (Rheumatoid Arthritis) fool you by thinking they are something they are not.  They are much bigger than the eyes can see.

Be Blessed.

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Rheumatoid Arthritis  is A FORCE that is so misunderstood but is still seen wrecking havoc in our lives each and everyday.  A force strong beyond words and all that is known about it.  How Do I Survive this monster that wrestles with me everyday and at every turn?  Um the question that everyone that knows me should be asking but fail to do and fail to realize.  My struggles are hard and they are real but we still fight no matter what, can you understand that? This is what I say from each of us to them. Our personal cry….So:

HOW DO I SURVIVE

The pain that is constant with the greatest possibility of getting worse
The uncertainties that Rheumatoid Arthritis will bring to my day as it has since I was diagnosed
The turmoil that racks my mind and body daily
The endless nights of fighting for sleep while watching the night slowly slip away
The days of wishing that Fatigue was a figment of my imagination
The many idle days that I’m given no choice but to do nothing at all
The thought of facing the Reality that I’m no longer the person that I once was
Me being replaced with a shell of my old self and accepting that reality
Accepting Rheumatoid Arthritis has changed every aspect of my life
Knowing that no matter how hard I fight, there will always be struggles that are bigger than the fight I’m in right now
People knowing but not accepting all that I am forced to go through while living on edge with Rheumatoid Arthritis Disease
Rheumatoid Arthritis the disease that is detrimental to me which can lead to devastation unknown
Being a person who has this disease and wishes so much for more than I get from all that is involved in my life;

We are fighters and we do what is necessary to survive this disease and all that comes with it.  NO, the fight is not easy, it is not sometimes and the struggles are hard and yet you would know this if you would take the time to look beyond what you see.  Yes it is a fight and it is a struggle but surviving is a must.  We have so much to live for and that makes our fight with this disease that much more important.

For us Surviving is a Must, Trust is a Hope, Understanding is a Myth and Support is our Wish.  If only all of these things could work together for those in our lives this would be a great salvation in our survival.  What the world needs to know, we are in a struggle surviving the Throes of Rheumatoid Arthritis, plain and simple. Take this to heart and it will relieve your mind of all that you think you don’t know about this disease.  It is there for you to see, so your eyes and minds need to be opened to our plight of survival with this giant wall that we are trying to climb everyday of our lives.

TO BE STRONG IS TO SURVIVE- TO SURVIVE IS TO HAVE STRENGTH AND THIS IS WHAT RHEUMATOID ARTHRITIS BRINGS TO OUR LIVES EACH AND EVERYDAY, THE STRUGGLE TO SURVIVE IT!!

Be Blessed

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I have Rheumatoid Arthritis, an auto immune disease that can be very devastating.  For me I have been Blessed because mine isn’t really as bad as some others.  For that I am so grateful.  You see many don’t realize exactly what this disease really is and what is does to the body, the mind and to the spirit so let me tell you a little bit about me and how I deal with this disease.

Thank God from me, I have to say my pain can sometimes be subtle, just a little aggravating twinge here or there but mostly in my hand, my right hand actually and from there to my right foot. That’s actually how my journey with this disease started.  Little did I know it would be a lifelong journey for me.  Anyway, my pain isn’t as bad as some that I see on the forums that I’m lucky enough to be a part of and blog for and I have to say when I hear how much some of them suffer and how debilitating their pain is, I really realize just how Blessed I am to not be at place with my disease as they are with theirs.  Still I feel their pain emotionally for them because I am able to visualize exactly how they feel because the pain that I do feel is a pain like no other but nothing like theirs.

My journey with this disease hasn’t been a bad one but I have had my bad days.  Like I said, I am in no ways at my worst with RA, that’s what we call it for short for those of you who don’t know the lingo.  The worst can cause one to have more than debilitating pain, be confined to a wheelchair, have deformities and a host of other issues that are life threatening so that is why I will say again that I am Blessed.  Still feeling what I do with this disease makes me realize just how much worst it can be.  I have my bad days where the pain can be constant and all that I can do is just rub my hand to try to relieve the pain knowing that won’t work but it somehow makes it comforting.  But there’s nothing worse than having your feet hurt and having a problem trying to walk.  I had that experience and it was my first and I can only hope it is my last but I honestly don’t think that it will be.  You see as I said earlier, my right hand and right foot was my first indicator but so far I’ve moved on to both feet and just a little with my left hand.  I guess I’m one of those unconventional ones.  Well you have to understand RA to understand what that means.  It typically affects both sides of the body the same but I’m just a little different.

One big problem we have with this disease is understanding which causes us to have to deal with this alone instead of having those around you helping you to make it through the tough times.  There are times we feel so isolated because of the fact we have run out of ways to explain exactly what we’re going through and even when we do, it’s not accepted as the truth.  I do not have this problem with those in my life, even though I must admit sometimes when I am feeling bad and with this disease there are many times, I find that I don’t always say when I’m sick.  I refuse to admit the truth because I feel like I’m saying the same thing all of the time and I feel people get tired of hearing it or they feel just maybe I’m not telling the truth.  It is a shame though when you feel this way especially when your disease is chronic and that means it’s an always disease.  You see this too is one of the struggles we face having Rheumatoid Arthritis.  I blog for myself as well as other sufferers for understanding which brings with it support but understanding is one of the hardest things that we battle next to our disease itself.

Going to Kaiser Emergency Medicine for unexplained headaches which I believe is caused by my neck issues and shoulder issues but feeling the pain pounding in your head and trying to ignore it isn’t going to last very long and it doesn’t make it go away.  For 4 weeks I did ignore it but ended up there and given plenty of meds which really helped but you’re left with the hope that the headache doesn’t come back.  These are the things that many don’t understand about this disease and how unexpected things can change for you so quickly.  Things aren’t as simple as you see on the commercials showing how you take your medicines for Rheumatoid Arthritis and all is well.  That is so far from the truth.  You still go through a lot while taking meds and this is what I deal with along with all of the other people suffering from this disease.  The truth is our disease is one that we hate and hate having.

So as I deal with this disease, my medication, while still learning what I should and should not do I am sometimes overwhelmed and truly at a loss.  At a loss not because I am so sick but just having this disease and what comes with it.  I have to have infusions every 6 months which last 4-5 hours and that’s very tiring, hoping that it works and not have to get another medicine, worrying about my immune system, etc.  I know it’s a lot but I know it could be worse.  God has Blessed me and I know this but He knows that we get overwhelmed sometimes.  The good thing about it, He helps me through it every time.  I have my moments and I have made it through first with His Grace and the love of my family. Thank God for my family.

This disease is a vicious one that has attacked many people and in many ways.  I will keep blogging to hopefully make others aware of its devastation.  I just wanted to share a little bit of my story and so I did.  I hope it opens a few eyes to our plight.

Blessings

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