Did you think your life would turn out this way? Did you think you would lose so much of yourself or did you realize just how truly devastating this disease was or could be when you were first diagnosed with, Rheumatoid Arthritis.  Our lives with Rheumatoid Arthritis, so much more than we ever expected it to be.

I’m sure most of us went through the process that goes with any new diagnosis.  You talk about it with the doctor after the shock, ask questions if you can remember any, discuss any medicines you might need and what you can or cannot do that applies but lastly what you should expect with Rheumatoid Arthritis.  Yes, those key words “What To Expect”.  Most of us probably took time to read up on RA and did as much researching about it as we could to get what we thought would be the best understanding of it and maybe find out a little more information that we missed when we spoke with the doctor.  Though reading about Rheumatoid Arthritis never met the reality of having it.

So as time goes on, little did we realize “What To Expect” getting this disease really meant.  It has meant many uncertainties, pain that is unbearable, joints that seem to be going crazy, fatigue that is unrelenting, all the while we’re wondering how this will be fixed.  The fix; our medication which is another thing we had no idea would be a long and bumpy ride trying to get it right.  I would say not many of us has gotten it right the 1st, 2nd or 3rd time and there are many who’s still working trying to accomplish that goal. But never did we think our fear would grow so much of the thing that is suppose to make us better.  Fearing the side effects that sounded to us in most instances as bad as our disease.  This was our testament that Rheumatoid Arthritis and its fixes was going to be a force to be reckoned with.  A lesson surely to be learned.  Something that reading about or researching just don’t teach you.

As time passes for us, we are learning truly that “What To Expect” means just how painful physically and mentally this disease is and how with time it changes your life in ways that we are forced to accept from the smallest to the largest.  Losing our ability to take care of ourselves is devastating but losing love ones to help you through the process makes the devastation worse.  Dealing with constant pain is something we’re still trying to come to terms with but it just won’t allow us.  It never seems to give us the break we  desperately need so we’re forced to take special medication in an attempt to get temporary relief but the pain never ceases to stop.  Yes, we have to deal with daily doses of fatigue.  Fatigue that settles in taking away your last bit of strength that you have but not giving way to sleep.  Fatigue that weighs heavily on our minds and body but renders you nothing in return.  With all that’s going on, we just can’t seem to sleep no matter how tired or worn out we are.  Still these are things we’ve had to learn “The Hard Way”, not from the words on pages that are suppose to teach us about this disease but from our daily lessons we’ve had to live.

We have come a long way since being diagnosed and have learned so much, all from experience.  A lot of difficult things but most difficult, how much misunderstanding would come with our disease and how much discord we would face from those in our lives, how time would force the loss of love ones, how many would not believe the magnitude of this disease, how much devastation comes with it and just how hard we are fighting each and everyday for peace and joy in our lives with RA.  It hasn’t ended and it won’t for us because understanding chronic means persisting, recurring and life long.  Yes, for us life long living with a disease that demonstrates how debilitating it can be and how confusing it can be while learning along the way that working to stabilize it is also chronic.

So what we thought we knew about Rheumatoid Arthritis from the beginning was nothing short of “No We Had No Idea”.  It is a far cry from the many questions that we didn’t know to ask.  So much more confusion than we thought and so much personal learning and lost along the way.  Still much more to go through and the realization of how hard it is to come to terms with it all after learning as much as we have because it’s not the end of our journey.  Rheumatoid Arthritis will never be one to learn from a book or the internet, these serve it no justice.  What we have learned and know first hand is from the pain, turmoil and devastation of this disease just from being diagnosed with it.

Be Blessed.

photo credit: grigouille/