Misunderstood

I have taken a break from writing anything when it comes to my RA and fibromyalgia symptoms and any complications of.  Honestly, it gets a little old, for everyone, I think.  I'm living it and want to escape it.  Even when it came to the blog or posts from Kelly Young, Rheumatoid Arthritis Warrior (not a reflection on her or the blog, just my issue and how I was feeling), I love reading hers, but was starting to feel like I was drowning in it and while some in cyber space got it, some of those living closest to me, didn't.  It's hard to live in two different worlds.  I am sure this happens to a lot of people living and dealing with a number of issues.  It is tough to have to think that no one really gets what ever your "it" is.

I was pleasantly surprised when I opened up the computer this morning to find a post from Kelly at http://rawarrior.com/. "This disease is similar to Lupus and no one says "Lupus arthritis." Changing the name of #Rheumatoid disease so it's not incorrectly referred to as "a type of arthritis." We are DOING it!".  I don't know what it was about that post, but it stirred something inside of me.  I couldn't wait to get the kids ready and out the door for school because my mind was racing and my fingers wanted to hit the keyboard running.

I cannot tell you how misunderstood this disease is.  I have had the owner of a cross stitch shop say to me, "I have customers who have ra and they aren't this bad."  I'm sorry, but I couldn't hold the loop in one hand and a needle between my thumb and any finger.  Either their treatment is really working for them or you are confusing this with arthritis.  I can't even hold a book open!  And that is a big part of the problem.  Everybody knows somebody with arthritis.  And many don't know or understand the difference between rheumatoid arthritis and arthritis.

I know the difference.  I feel the difference.  I am reminded the difference each time I am sent for an echo cardiogram.  Or each time I experience back pain and have to worry if I am getting another kidney infection.  When I hit a wave of exhaustion I know I wouldn't otherwise if not for ra.  The almost daily low grade temps remind me.  And of course, the relentless pain...that screams at me.  What should be simple daily tasks and the difficulty doing them remind me.

I, and many others, I am sure, am my own worst enemy.  I am too proud.  I do not want to ask for help or have to explain why I can't do something. Partially because I know, for a fact, that RA is terribly misunderstood.  It is a disease.  One that I live with daily. I often feel like, because ra is so misunderstood, that people suspect that I am just being lazy which is something I am far from.

But, it has occurred to me recently, if I don't care of myself, one of my biggest fears surely will come true.  Being a burden.  I don't want to be any more of a burden to my family than I have to be.  So I have to do some things to make this happen.  One of those (**hard swallow to clear the lump) is to embrace rheumatoid arthritis.  It is mine and all mine.  And it is up to me on how I choose to handle it.  By handle it, I mean fight it with all I have got.  And that means, making myself the healthiest me I can be even with RA.  

I don't care what anyone thinks my RA is like.  Because, I assure you, it isn't just arthritis.  What anyone can do, is get in my face and ask me what I have done to change the course of what my RA has or will do to me.  Go ahead, challenge me.  I guarantee you, I will fight harder than I ever have to make this disease the best it can be, for me.

Every time I walk into my wonderful (I say that with a smile, because I am lucky to have them) rheumatologist's office, it is in my face what is in store for me.  Would I rather have a walker or cane than a wheelchair.  You betcha.  That means, get this weight off.  Which means a healthier heart (did you know that heart disease is also a major risk and reality for people with RA?).  I understand that I may still wind up in a wheelchair, but it won't be without kick ass effort.

There will be people who underestimate what this disease really means and what toll it takes on me.  That doesn't mean I have to.  And I won't.  But I will fight for myself and my family.  When I die, I want my family to be proud of who I was and how hard I fought to be with them healthy for as long as I could.  I don't want to be remembered as a burden.  I can't think of one good reason not to fight this as hard as I can.

I have been told I have a gift in writing.  I will use that gift to heal my own wounds and continue to reach out to others.  It is so important to be and feel understood.  The link to the following song and lyrics speaks volumes to and about myself as well as many others.  I am not sure how it ties into this post but I found it going round and about in my head as I wrote.  I think that we all need to hear these words sometimes. 

Fighting the Good Fight

For a little more than a month, I have been hesitant to write.  And here's why.  I have this friend, from high school.  When we were actually in high school, my contact with her was minimal.  However, with facebook, that has changed.  If only, back then, we could see what was to happen in the future.  Facebook has done this for me many times over.  Some wonderful friendships have been established, re-established and strengthened.  This is facebook at it's best.  One of these friendships; reconnection's I am thankful for is with a girl I knew as Michal.  Many now call her Mary.  Mary Michal Workman Eggers.

With those closest to me, I am known to be quite hard on myself.  Recently, I was paid a great compliment in an email sent to me.  As I read it, I felt I was undeserving of this because all I could think of was Michal.  The email included a story about someone who, even in the face of their own suffering, was always thinking of others.  It was the story of Jesus and the Stations of the Cross.  I forwarded this to her with the same explanation I am about to say here.  I am Catholic.  I am by no means a "Bible pusher".  This came about because my daughter was involved in the ceremony at church.  Apparently, my husband related this story to me in ways and wanted to let me know.  It was a great compliment that I had trouble receiving.

So Michal.  Yeah.  You may have heard of her.  She's the crazy chick, who while on a run, decided to tweet Lance Armstrong and challenge him to a 50-meter kick off in a pool!  No, she wasn't run off the road or hit by a car (this time), or have a collision with deer while on said run(this time).  This came to her in a completely (arguably) sane moment.  She did it for a very select group of special teens.  Who happen to have cancer.  She did it to help raise money.  For them.  Teens Living with Cancer.

I am going to try my best to link what ever I can here.  This is not my forte.  This is partially why I have been so quiet on here.  My technical skills suck.  But I know how to link a youtube video and I found one today!  The other reason for not writing, is because I felt I had no right to, not for one single second, complain or take, in any way, away from what Michal is trying to accomplish.  I vowed to share what I could, where I could.  So!  Hopefully, I can do some good here.

There is so much out there now about what Michal/Lance/TLC is all about.  I wouldn't be capable of giving it the justice it deserves.  Hopefully, I can start with this link Dual in the Pool .

Hey!  I think I've got this!  Here is the reason Michal is fighting this fight always and especially on April 28th along with Lance Armstrong!  Dear Melissa

I encourage you all to take a minute to watch this video, read Mary/Michal's special letter and to make a donation for DUAL IN THE POOL!!  The following link will tell more about DUAL IN THE POOL!!! As well as provide a link to make your generous and greatly needed donations.  Make your donations here!!

Holy Cow!!  I'm a linker.  I am a blog linker!! Watch out!!

Seriously.  Thank you for taking the time, each time you do, to read.  This is one of the most important posts I have ever put out.  Cancer has touched too many.  It  also has and continues to take too many from us.  Nobody deserves cancer.  Least of all, children.  As adults, it is difficult for us to process such a life altering diagnosis.  Yet these are children, who are expected to process the same when they have barely had the time to navigate life.  Let's fight this together.  Let's help, in any amount we are able.  Every penny counts.  I just learned that "just TEN DOLLARS provides one hour of hope for a teen facing cancer". 

If I haven't provided enough information, I apologize. I am slightly distracted and multi-tasking.  But it was important to me to get this out.  You can read more and be deeply inspired by checking out Mary Michal's blog at ironmomma.com. 

I am constantly amazed by what this woman is capable of.  You will be too.

Just. One. Look.

It was time to go clothes shopping again.  I was looking forward to it because by the way my clothes were fitting, it was clear I had dropped a few or my body shaped changed again.  I notice that I don't dread shopping for clothing as much any more.  It is what it is.  I am who I am.  No matter what shape.  And while many do not know why (at this point) there is little I can do to change the way I look, I know the truth.  I am working towards it.  Along with my docs.  And besides, I have learned to accept that it doesn't matter to the people who really love me, what I look like.  Me, on the other hand...well...

Honestly, at this point, my biggest worry or stress about shopping, is for shoes.  Having arthritic feet make shopping for cute shoes impossible.  They have to be supportive in all the right places, little to no heel and there is no question, they have to be roomy and comfortable.  If they are not, the pain can be excruciating enough to be burned into my brain so I can NEVER make that mistake again.  I somewhat made it past that hurdle.  Comfort is key to a better life.  Daily pain is inevitable, there is no reason to stand in line for more.  Ever.  If I were a millionaire, I would design cute shoes for people like me.  There are a lot of us who would greatly appreciate it.

So into the dressing room, I go.  With pants that are TWO WHOLE SIZES SMALLER!  I optimistically pulled a 20 off the rack fully anticipating having to try on a 22.  And the tops, I grabbed 1X.  Those, I was pretty sure of.  Smaller would be nice, but this (somewhat shrinking) rack of mine, makes this difficult.  Nevertheless, I no longer require the "2" in front of the X.  Progress.

"Do not stand in front of the mirror."  I tell myself.  My sister and her family had just left an hour or so ago to return to their home about 10ish hours away.  I was still tender and puffy-eyed from that good-bye.  I knew that the sight of myself in the mirror would be too much.  There is much I have learned to accept.  The reality of my body staring back at me in a mirror, is not one of them.  I know that we are supposed to love ourselves first.  I have to say that any progress I make, slips away, when I see me.  I can't take it.  I am super critical and hateful feelings are inevitable.  I haven't learned to navigate this, yet.  I know I am not alone.

So I didn't.  I stood to the side and undressed, dressed and undressed again. Only standing before the mirror when I was draped in clothing.  "Oh my God! They fit!  Woo Hoo!  Not bad..." It was all good.  Until I tried on another pair of pants.  Oh, they fit, but somehow they made the excess skin and flab terribly noticeable and ugly.  As I struggled to get them off quickly, I looked to the ceiling.  Not because I was avoiding the mirror, but because I was blinking away tears.  It was too late.  Damage was done.

Usually at the end of my post, I have come to some solution, some promise, some peace.  This time, I got nothing.  I am not looking for positive words to come to me here.  I am simply stating this so that maybe I can help someone else not feel alone.  Like a failure.  This [blog] has always meant to be about honesty.  Brutal or beautiful.  This is not beautiful honesty.  I know that there is another woman out there who goes through this very same dance.  This is who I write for.  We know what we need to do, have to do.  But what some (outsiders) fail to notice are the roadblocks before us. The ones we put there ourselves and the ones we have no control over.  Beneath all those excuses and best intentions are the very raw, stuffed down feelings.  That only come out when we are alone; standing in front of the mirror...so very close to tears.  Just one look.  That's all it took.

Wouldn't know this to look at me, would you?  Imagine how many others there are.