One Day

What Would Rheumatoid Arthritis Awareness Mean?  This is the subject I am to write about for Rheumatoid Arthritis Warrior's Blog Carnival on Rheumatoid Awareness.

Did you know that there is an Rheumatoid Awareness Day?  It's February 2, 2014.

I want to start by saying that, in general, when we are standing in a room filled with other's, it is guaranteed that many are battling...something.  And I am sure that many desire to have some light shed on their something.  I can only speak of my something.  And it is Rheumatoid Arthritis.

I would want others to be aware that people with RA/RD are fighting every day to function to the best of their ability,  just like anyone else with better understood/researched/talked about diseases.

Also, sometimes, RA/RD comes seemingly out of nowhere and whips the rug out from under you, your family...your entire life.  And even at it's eventual diagnosis and treatment, things are slow to recover...and never actually recover to the point your life was at when you were standing happily on that rug before (yes, I know this is redundant) IT WAS WHIPPED OUT FROM UNDER YOU! Everything changes.  And rarely for the better.  You suddenly find yourself having to adjust to being dependent on others for the simplest of things.  You find that your home has many obstacles that threaten your independence. For me, I feel like I lost my identity.  I was the do-er.  I worked hard and was able to accomplish many things in a day, and then suddenly, taking a shower became a monumental task.

RA/RD can be all-consuming for the patient and the family dealing with it.  It is an life-changing event.  Period.  Be supportive, not judgemental and never assume that you know everything about the disease or how it or the drugs affects someone.  Because honestly, you have no idea.  RA is different for everyone, affects everyone in a different way and not all patients respond the same to the medications.  Those damn commercials are so misleading.

I think, in the end, what I would like most to come out of Rheumatoid Awareness Day would be for people to recognize the day and if they know someone who is living with RA, that they take a bit of time to learn about what it means to have Rheumatoid Arthritis.  And how to be supportive.  The last thing I ever want is for someone to feel bad for me.  What I really desire is to be understood.  And instead of getting upset with me for doing to much or not enough, realize that I am trying to find a balance, again.  Honestly, it is no longer the disease hurts, it is the people that don't understand it.  There isn't any medication for that.

Validation

My mother recently left some recipes and articles on my kitchen table for me to look at.  There was another article on RA.  "10 Ways to Get Rheumatoid Arthritis Pain Relief".  Usually, I disregard these articles because all to often, proper research seems to be lacking.  Surely, someone suffering with this disease would not back some of the suggestions that are usually written.  I scanned through the printout.  And caught this:

• Emotional pain. All this pain and stiffness can begin to take an emotional toll on you. "It can be the dominant hallmark of the illness," Hadler says. "It's a consequence of the compromise in personal effectiveness — as in ‘who am I and how do other people perceive me and what can I accomplish?’ For many people with the disease, it's this emotional component that's overwhelming."

True Story.

You know what else takes a toll on you?  Pretending.  That everything is just ducky.  When it's not.  It's called holding it together.  I demand a lot of myself when it comes to holding it together.  What I express here, is not expressed much, at all, in my daily life.  When I do break down, it has usually been festering for a long time until I weaken enough and the dam breaks.  A girl can only take so much.

However.  This girl has an amazing family.  My husband is very understanding and supportive and my children are compassionate and caring as well.  I don't know where I would be without them.  They are my sweet reward in this mess of RA and such.  

They may not keep their rooms clean, do their chores without being asked, be as handy or aware of things that need to be done, but they are there when I need them to be.  They fight, whine, point fingers, get moody, overtired and loose things and drive me absolutely crazy.  But they are so there for me and watchful and try to be there to help me get up from a seat or help me down a step.  I am so proud and so very much in love with and in awe of them all.

It has taken me a long time to feel, know and believe that my husband and children love me, respect me and understand despite my not being able to do all the things I used and want so badly to do.  Because they have been so solid in all of this.  They never wavered...I did.  I had to learn that they had my back...no matter what.  They believed in my diagnosis more than I did.  I wasn't listening because I was too concerned with making it look like I was capable and still needed.  

There are many more areas that I still need to work on this, outside of home.  It is just a hard thing for someone like me to do.  While I have always been a fighter, there are some areas I fail to fight hard enough in.  I prefer to shut down and step back.  Way back.  When you come from a world where you feel you are only worth what you can do and how well you do it, it is hard to feel secure when your ability to do is stripped from you.  Especially when it is all you know.  It is your identity.  Your self-worth.  According to your messed up head.  

I have a long way to go, but I am determined to get and maintain a grip on this harder than it can grab me.  Reading that little clip of the article was so helpful.  I have yet to read the whole thing, but grateful for the little bit of validation I already gained.  

Worn

Bet if you follow me on facebook, you knew this was coming. The pity post.  So here it is.

I want to say how impossible all this is.  But the positive freaky cheer leader that lives in me is waving those stupid strings on a handle at me, wearing a smile and saying, "Nothing is impossible!!!  Nothing!  Keep your head high!  S-M-I-L-E!!!  Rah! Rah! Rah!"  Her incessant perkiness is making me want to use her  obnoxious megaphone to knock her into the furthest corner of my mind; forever.  I am really not a fan of hers right now.  Not at all.

With the exception of a few that I am close to, I rarely reveal how I am feeling.  Even then, I am usually filled with regret.  Often because I think and feel I sense of disappointment.  I feel like it is thought that I could be handling things better.  And then sometimes I get angry, thinking, "who the hell do you think you are?  If you are judging me and feel that I could handle this better, well then YOU have no idea who I am and how strong I have been! Everybody cracks, every once in a while."  And then I rethink it all and assure myself that I am just reading into things and that really what I am upset about is my own insecurity about how my strength and endurance is being perceived.

By the way, strength is: NOT dropping several F-Bombs here.  Believe me, I really want to.  So please, feel free to  insert them where you feel is appropriate.  I have heard several choice "bad words" escaping my lips (not in front of the children!) more frequently, lately.  Reflection tells me it's the anger making it's way to the surface.  A slow release, I suppose, in hopes to avoid an inevitable explosion.  Perhaps this mini break-down could have been worse if not for those few moments of, "I don't give a crap  [this would be a good place to insert a stronger word.  Just sayin'] about what is/just/will fly out of my mouth!" Perhaps, it's just my way of making it clear, if you were taking notes, where an exclamation point should be."  Because, seriously, how often is any "bad word" not followed by an exclamation point?!  And if my brain weren't so Fibro-Fogged right now, I would be able to think of the freaking word I am trying to use here.  Authentic, creative...strong point, emphasis.  Son of a ...I can't think of it, right now!  Let's just call it a passionate expression.  Right now, I have a desire to be passionately expressive.

I get why some older people are perceived as grumpy.  I really do. All their lives, they were independent, active and full of life.  And then they are no longer.  The "youngsters" in and around their lives buzz all around them effortlessly and seemingly, tirelessly and seem to take for granted all they are able to accomplish. I can imagine the transition is difficult.  So much of what they thought defined who they were all those years, all the things they mastered and aspired to master are suddenly and seemingly useless.  There it is.  Useless.  I don't give a rip what you are thinking right now! And I know that I am useful, but if you want to know, really know, what your aging parent, grandparent may be feeling and want to understand them better, then read on.  Sometimes truth is disappointing, hard to swallow and entirely inconvenient.  Feeling useless, at times, is a reality.  Like it, or not.

Currently, I am very limited. This time, it is not because of my RA.  In a couple months, hopefully, I will be having a hysterectomy.  When I say, hopefully, do not read that I either want or am ready for this.  Because, I am not.  That is a whole other issue.  The hopefully, is because I don't know how much more of these limitations I can handle.  If it was just an issue of the inconvenience and strange feeling of the "situation" that the hysterectomy is needed, I could deal with it.  The issue is the pain. The more I am on my feet, the more painful things get.  The pain is always present but way more prominent when I have been standing.  The kind of pain that leaves you restless, and if I am to be honest, scared.

There is so much to be done and so much I want to do.  If I could just let it go, I would.  What is terribly hard for me to handle is knowing that whatever I am letting go of, someone else is burdened with.  I hate that.  My time siting here is consumed with finding solutions to the problems.  I can drive the lawn tractor around and, well ok, so right now, if someone gets it, hooks up the trailer to it, and brings it closer to me, I can drive it.  That's it. I can freaking drive the damn tractor. Someone get me a medal.  All this [insert Passionately Expressive (PE) word here] time I have during the day and I am useless.

I just want to be on the other side of all this, look back and say, "Wow, that was rough, but I made it."  We just got to the point in my RA treatment, where I feel I could have been/will be at the cusp of feeling the best I have in years and another hurtle is placed before me.  My face isn't against the wind, as it should be.  I firmly believe that we are never handed more than we can handle.  However, I am tired.  I will continue to push forward, because there simply is no other acceptable choice.

The weight of walking through this is proving too much lately.  I've got that face on again.  The "Everything is just Peachy" face. So not peachy.

I am really trying to make the best of everything. I was encouraged that maybe I am doing better that I think I am last night when DH had this to say to me, "I keep expecting to have that moment where I tell you to snap out of it, but even after all this time with everything going on, you are still holding strong."  He tells me he is relieved in those moments when I break down and cry.  Funny, it's those moments I feel so weak and exposed and again, if I am being honest, ashamed.  I cannot believe he still thinks I am strong.  Especially when I have been feeling so broken.

There is so much happening, so much coming at me and I am struggling to navigate my way through it.  I can't find a balance I am happy with.  I am realizing I am living with the balance everyone else is happy with.  I feel like I am expected to just sit here and be content with what is.  Count my blessing and don't complain. I don't complain much.  I have and do count my blessings!  Want proof of that?  I am still here!  I still fight and work hard to go along with everyone else's expectations, as well as mine!  I am pissed that I sometimes can't say what I am feeling, because it may just make someone uncomfortable.  Well, guess what?  Life is uncomfortable.  If I tell you that I feel like I am not as useful as I used to be, don't roll your [insert PE here] eyes and act annoyed!  That is how I feel!  Seriously!  Some people are so wrapped up in their own world and expectations that they can't even see or hear how ignorant they are being.

That cheerleader in my head can go to hell!  And with her, she can take all the unrealistic, inconvenient, and uncomfortable BS with her. Until she can come back with a cheer that goes, "It's a bad day and that's OK! Let's go kick some [PE] [PE]!!  YEAH!",  I don't want to hear from her.

When you come across that older person (or anyone, for that matter), try not to be so dismissive.  Also, no pity please.  That is not what we want.  Remember that someday, you will be missing the person you once were.  For some, it just comes sooner than ever expected.

***After writing this, I found this posted on facebook for me.  Kristin, thank you so much.  It is as if someone read my heart.  xo  Because of this, I am changing the post title :)

Making the Best of It

This is a piece being written for a blog carnival for Rheumatoid Arthritis Warrior.  The request for this topic, at this time, is perfect.  It's about what we do to keep the disease from taking over our lives.


Many times, I have heard the words the following words: "I don't know how you are doing it.", "You are so [strong, amazing, etc]." and even, "an inspiration".  Wouldn't it be great if I believed I were just one of these.  I am not.  I am human.

Truth is, most likely I experienced an emotional breakdown just weeks, days or even hours before these kind and very well intended, but misplaced words of admiration were either spoken or written...for me.

Having rheumatoid arthritis,...sucks.  There is no pretty way to say it.  There really are no pictures, words or a song to make look or sound any better.  It is what it is and it IS for the rest of my life.  This summer, I will turn 40.  As far as I am concerned and hope for, I have another 40 to go.  It is up to me how those next years will be spent; not RA.  Not for the most part.

I would be lying if I said I am not plagued with thoughts of all the things I would like to do and either cannot or cannot as easily any longer (Somehow, saying I cannot seems easier to swallow, say and write than, I can't).  It happened this absolutely glorious morning when I walked the kids out to the bus.  I glanced at the yard and for a moment remembered the person I was.  The person who would have got her kiddos on their way and then started at the yard work.  It is sad to know how I won't being doing that, again, this spring.  I think about the gardens and flower bed that will need to be worked and how I wish it was in our budget to revamp the entire yard to make it easier; for me and especially for my already overworked husband.  Even a few raised beds that I could tend to while standing would be so wonderful. This is just the outside of the house.  Inside, I am reminded daily of all that I cannot do as well or at all, any longer.  We have ideas and plans that would make life easier for me in the kitchen (you have no idea how much I would love drawers instead of cabinets for lowers.  Bending to find and then having to support with one hand while trying grab what is needed with one weak hand and safely stand again is tough!) and our laundry really needs to be moved upstairs.  There are unfinished projects that I, well, the Old I,  would have had done lickity  split!  Not to mention the day-to-day things that can sometimes feel like monumental tasks.  It's a lot.  And it can also be too much and really get this girl down.  So I have to work especially hard to make it all work.

I am a list girl.  I need a plan.  So, I make lists.  This goes beyond shopping and basic daily To-Do lists.  I have had to relinquish control of some tasks and to make me feel like every detail is being tended to, I have made out lists outlines for each room of the house.  They are in the process of being typed out, laminated and then filed (maybe in a binder, haven't decided on the best/easiest way for access and use yet) so that my family can easily help and know exactly what I need.  Believe it or not, they actually prefer this. They know what is expected and then can check-off what they have done as they go along.  What some people don't realize is that RA can make talking difficult.  ANY parent gets frustrated when they have to repeat themselves.  A parent with RA gets frustrated on a whole other level.  And I LOVE to talk!

I set smaller goals for myself.  Every day, I expect myself to wake up, make the bed and clear the sink, tables and counters (as well as getting the kids off to school).  If I get those things done, it is a good day. If I get more than that, well then!! Even better!

I play games, snuggle with and listen to my children.  It doesn't get much better than that.

As a family, we cook together. As the weather gets warmer, we spend a great deal of time outside from morning until well past dark.  We have a pool and gorgeous property to enjoy.  We also camp. I love to camp.  In the past few months, we have started spending much more time together, playing games and even sitting down every Sunday evening to watch a favorite TV program, Once Upon a Time.  I love these times.

When I am forced to sit and cannot type, hold a book or kindle, I really allow myself to watch something I enjoy.  I love the simplicity of classic television (Good Gravy!  Would someone please release Wagon Train, seasons 5 and up?) and movies.  Black and white television is wonderful therapy.  I love The Golden Girls, Perry Mason, Lucy and the Beave too.  It's all feel good for me.

I connect with friends and laugh.  I appreciate when they ask, but in general do not like to talk about how I am feeling.  So, for the most part, I like to keep it like it would be if I was "normal".  I live RA every minute of every day and I just want to feel like I used to.  I am so blessed with friends and family, it is crazy.  I don't know what I would do without them.  I love each and every one of you.

I stopped fighting (for the most part) when help is offered.  Truth is, I tell myself that it is for Jim, my wonderful husband.  When someone texts or calls to let me know they are out and ask what I need, I think of how much he will appreciate not having to run out.  We are so blessed.  The past week was rough.  In many ways.  The loss of a pet, I am not well and it was infusion week which means I am feeling pretty bad going in and exhausted coming out. We crumbled a bit, but were never allowed to fall.  So many hands cradled us.  There was help with yard work, shopping, technical, mechanical, errands, meals.    It was exactly what we needed when we needed it. Without ever having to ask. Even if I wanted to, I wouldn't have had the energy to fight all that was coming our way.

I say no.  It still stings when I do. But I have no choice.  Right now, my body is pushing hard for me to hold firm to NO.  I have to put my needs first.  As a woman and mother, this is not easy.

I am compliant with meds.  I research and ask questions.  This sounds simple.  But when I started this journey, I was not compliant.  I didn't understand what was happening.  I was in denial. I walked in and out of the doctors office and let them tell me what was going on.  Now, I tell them and we work together.

I have a good team of doctors.  Period.  This should be at the top of the list.


I look to others fighting this fight or any other fight.  It doesn't matter what you are fighting, it is how you choose to fight.

I try hard to block out any unnecessary crap.  My energy can't be wasted on it.  It just can't.

Lastly, I wake up every morning, put my feet to the floor and am thankful that I can stand, walk and live.  Nobody knows better than I do what I feel like at any given moment.  Or how hard things can be or are.  How many times I say to myself, "I can't do this anymore." and then do.  Or cry.  And then wipe the tears away and keep on.

Oh yeah, sometimes I cry.  This is hard.  RA is a daily fight.  A fight that will never go away.  That realization can be daunting on some days.  RA is full of ups and downs, discouragement, trials gains and losses.  What you could do yesterday, you can't today.  Nothing is simple.  I am going to have surgery soon (hysterectomy). I consider it a simple thing.  In reality, if you have RA and need surgery, it becomes anything but simple.  I will cry again.  And that is OK.  Plop anybody in my shoes for a day and I think they would cry too...and more :)

I tell myself that there is a reason I was blessed with RA.  It is not my place to ask why, but to accept it and make the best of it.  I am far from making the best of it entirely.  It has been more than three years and I have yet to have a good month.  If I am honest, I think I have yet to have a good week.  I am hopeful that my future "don't get me down" duties will include going for a nice walk.  That is it.  A nice walk.

Go big or go home doesn't apply here.  Thinking small produces the most positive results of all! At least for now ;)

The Best Medicine

Compared to yesterday, today was great awesome.  Honestly, it is hard not to have a better day when my whole family is home with me.  They are the perfect distraction to emotions, frustrations and discomfort spiraling out of control.  When they are around, I don't need to remind myself to breathe...or laugh.  I feel like I have a purpose and they make getting things done much easier because they are quick to step in and help reduce the amount of steps it takes to get things done.  I am as close to the person I used to be when they are around.

There was a time where, when the storm was over, I would have read something like I what wrote yesterday and cringe.  For many reasons, like sounding weak, pitiful, temper-tantrum-y.  I guess I just don't care so much any more. The fact is, this is part of who I am.  And if you would like to sit here and tell me you think you could or would handle it better, well then...yay freaking you!.  This is no party and there are HUGE learning curves.  Life isn't predictable in itself.  Life with RA...well, it's kinds willy nilly for me.  Bad days are inevitable.  And never predicable!  I am just thankful that the good days outweigh the bad, overall.

Truth is, I learned a bit yesterday.  I allowed myself to break a bit and admit what I had been feeling for a very long time.  When I wrote the words, "I want my life back!",  tears flowed freely.  The dam burst and I understood how badly I had been feeling. More importantly,  I admitted to myself how badly I had been feeling.  Now I can begin to heal.  And when the next temper tantrum comes, I will deal with that one accordingly as well.

The reality of RA is never going to go away.  I know that.  Doesn't mean I have to like it.  I try to find the silver lining.  Some days I do and some...not so much.  Something else that I have learned, there is nothing that I am writing here that hasn't been thought about by most, at some point in their lives.  And my writing it doesn't make me any weaker.  I don't do silent well.  As my dear husband will tell you, if I am quiet, something is brewing ;)

Tomorrow is another day.  One more day away from yesterday and another day to spend with family.  That is by far, the best medicine I have ever had!

Happy Easter to you and your families!  xo

In Sickness and in Health...

I wish I was sitting here writing about how great I am doing with my 3 minutes a day of activity.  You have no idea how much I wish that were the case.  I am still putting in the effort, but if I said it made me feel great, I would be flat. out. lying.

I feel like crap.  Period.  Eating is an issue.  Walking is an issue.  Sitting here is an issue.  Blood work comes back and they want to prescribe something else.  They find out I have not been taking one of my meds because it makes me feel even worse.  "How long have you not been taking it"  I tell them a couple months.  It is metformin. It's more preventative (because of steroids and because I have  PCOS) and even my levels were still acceptable.  I tell them that I have not been taking it because I am already having GI issues and that med can make it worse. "We need to see you about this."

Truth is, I am so sick of being "seen".  Every time I go, there is something else.  I am tired of it.  I am tired of drugs and poking and tests.  I am tired of explaining.  There are 3 more specialists I am supposed to consult with.  I don't want to.  For what?  More tests?  More wrongs.  More meds.  More false hope?

I just want to go to the store and run errands that most people complain about without slowing to a crawl 10 minutes into the trip.  I want to not dread the snow melting because seeing all the outside clean-up that I can't really do right now, is depressing.  I want to plan parties and be completely consumed with every detail to perfection.  I want to walk in our woods and keep up with my children.  I want to easily run up and down the stairs like I used to. I don't want to be dependant on anyone.  I never was before. Damn it.  I WANT MY LIFE BACK!!!

Today would not be a good day to complain to me about anything stupid.  Anything that can be changed by a single or even multiple actions.  Because it can be changed.  This sucks.  I have been compliant and patient and as positive as I can be.  Today is a rough day.  I will never even tell my husband how I am feeling because he has been so amazing, supportive, loving and wonderful.  I hate that this is the wife he has.

My last job, I had a wonderful boss.  His name was Tom.  He was a wonderful man and husband. Tom's wife had RA (how ironic).  She was just as wonderful.  In many ways I never realized until the past couple of years, he was the kind of husband as Jim is to me.  Patient, doting, kind, loyal & loving.  Tom would speak to me often of his wife's illness.  I didn't connect all of this until about a year or so ago.  I had the privilege of seeing the other side of RA.  It wasn't that he complained, but he was frustrated with every setback, illness, treatment, hospitalization and even need.  Ann eventually became very dependent on Tom and he accepted that.  However, he would reveal sometimes that, even though he knew she could do nothing about it, it was hard on him.  He was not at all resentful.  He was perfectly wonderful.  But it was a difficult life.  At the time, I had no idea, but it was a window in to my future.  Even though I know Jim will walk through this with me without a single complaint, it is not what I wanted for him.  For us.  I know the vows.  I don't care,  He deserves better.  I love him so much and am so thankful for all the things he does to make our lives the best they can be and better.  I don't want it to be this hard.

And it is hard.  I could sit here and write about exactly what is so hard, but honestly, my hands don't have the strength to make it through. I am dead serious.  Just know that I have to work very hard to get some of the most mundane tasks completed. Try to count every joint in your body.  75% of mine are angry today.  Oh, and lets not forget the brain sending false messages to my nerves telling me I hurt...for no reason.  So count your muscles too.  And then there are the latest issues (GI & female).  Put all that together.  Overwhelmed is an understatement.  Don't judge.  This sucks.

The things I want seem so simple. And trust me, I am always more than aware that my issues are a drop in the bucket compared to many. But today is hard.  Today I am having a bit of a pity party.  But honestly, at some point, wouldn't anybody?  I will still smile and make sure any trace of tears are long gone before my beautiful babies come through that door. I have no choice other than to suck it up.  I had the blessing to see what the other side or RA looks like and the tole it can take on a loved one.  Chin up.

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. 

In My Daughter's Eyes

In the past month, I have been named someone's hero.  Twice.  I came across the first nomination while looking for my daughter's lost homework assignment.  It was an interview my she did with my husband.  She asked who his hero was.  It was me.  Then, last night Emily announced she needed to type out and print an essay that was due today.  When it was finished, I read it.  Her assignment was to write about her hero.  Again, it was me.  Wow.

I bake a mean cut-out cookie and take pride in how they are decorated.  I am Lazy Pirogi & Jambalaya Queen.  I am the Stain Nazi, I can get most any stain out.  I am organized and very particular.  I love the look of how neatly folded towels look.  I am probably the best sheet folder out there, second to my mother who taught me.  I preach that there is a place for everything and even label...most everything!  If it is broke, chances are, I can fix it.  Doesn't matter what it is, I will at least try.  I love to decorate.  I have been given the title, Craigslist Ninja!  If I need it, I will find it.  And for a killer price.

My floors aren't as clean as they should be and there is certainly enough dust begging to be...well, dusted.  The dish rack often has dishes in it and my counters are cluttered more often than not.  There are baskets of laundry, all at different phases, all over.  Beds are not made. My sun room, has become a collecting area, again.  Our flower beds need weeding.  And this year, we will not have to worry about getting the Christmas lights up.  Because for the first time ever last year, they never came down.  Dinner isn't always ready on time...or at all.  My room, is a complete disaster area.

None of this matters.  None.  Not at all.  Because, I read what my husband wrote.  I am his hero because 'she has rheumatoid arthritis and fibromyalsia and though most days it is painful for her to just get out of bed, she does it and not only does she do her best to do what she can, but most days she accomplishes more than I do and she does it all with a happy attitude (most of the time).'  And in my daughter's eyes(wrote that line before I remembered the song), all that mattered was that I want to help people and make them happy.  The fav for me was she knew that I believe family is important as well as being a good friend. 

I have a lot to live up to.  They have set the bar pretty high and now that I have achieved this highest of honors, I fear that there will be disappointment.  At the same time, there is this sigh of relief.  I cannot not even begin to express the fear I have of not being a good enough mother.  And with the challenges handed to us/me in the past couple of years, that fear had surfaced once again.  But it's OK!  I am doing it.  Not perfectly...but my daughter is happy with me.  I am her Hero...

There is no amount  of counseling that could bring me to where I am right now.  This was concrete, black and white proof that I shouldn't give into those great fears I have.  She is my daughter and one of the three greatest gifts God has ever blessed me with.  Every night I go into her bedroom and kiss her good night and nuzzle her.  I tell her I love her and she sighs back and gives me that sleepy smile.  Sometimes we chat for a bit.  Sometimes I get into bed, can be nearly asleep and realise I never kissed them.  It is no exaggeration, there are times when I can't walk and use the cane to get to them.  Sleeping or not, I believe they know when I am there.  This is what a good mother does.

My children don't care that the clothes are all over or the counters are cluttered.  They know I want it differently.  But so far, one of them has shown me that none of that truly matters.  I am so proud. 

It just occured to me.  One of my favorite artists is Martina McBride.  Years ago, she had a song out called, In My Daughter's Eyes.  I would cry every time I heard it and wish that it could be like that for me. All the while doubting it would be.  I was so terrified of failing, especially with my daughter.

In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes

I think I will end this post here.  I wish I had recalled this sooner.  I couldn't have described this any better.  I have been rescued.  I have not failed.

Less Than

PERMANENT DISABILITY.  That was the box checked on the form for my parking pass.  I read it and was immediately sick inside.  First of all, I didn't even want a parking pass.  I gave in only because sometimes the extra steps held me back from being my best at our destination as a family.  I would push through paying for it in the end.  Every step counts.  I am not even 40 and most of the time, my 82 year old Gram moves smoother and faster than me.

It's been a rough few weeks here.  I keep trying to count my blessings and being thankful for all that we have.  I keep cheering myself on.  I struggle to do these things after the other night.  My son, who was sick, woke up in the middle of the night needing me and I couldn't get there.  I heard him and tried to move, but couldn't.  Granted, my husband was there and hopped right to it.  I know that if he weren't, I would have made it to our son, eventually.  This was hard for me to accept.  Harder than a Handicap parking permit.

I know that in time I will adapt and learn to navigate around things.  For the longest time, I was unwilling to change anything, thinking that I would make it work.  Well, I guess I can.  But at what expense?  I do feel like I am giving into this.  Leaving me feel like I am a weaker person than I ever thought I was.  There are things I am willing to accept.  How I wish it was in the budget to have our washer and dryer moved to the first floor (you have no idea how badly I want this).  One of our bathrooms is in need of a new shower.  We already know that we will have to make room for certain "luxuries" for my, "condition".  I hate this.

Right now I feel less.  Not less pain, just less of a wife, less of a mommy...I feel a whole lot less in many areas.  I know we have all joked about not wanting to do laundry and other simple household chores.  It is a joke, until it is a reality and you can't.  Not fully anyhow.  And as much as we have all felt the fatigue after tending to our children in the middle of the night when they are sick, we do it because they need us, we love them and there is no other place you would rather be or any other arms you want wrapped around them.  It is our job, our simple pleasures.  That are often taken for granted.  Simple pleasures that I am doing to the best of my ability...which is nowhere near my expectations.

I wish I could explain what having RA feels like.  OK and fibromyalsia too.  I could try, but honestly, unless you have it, there is no way for me to tell you.  What I can say is that I have a high threshold for pain.  My knee surgeon once told me (my first surgery was at 16) that if someone were to wake one day and experience the pain I feel everyday, it would bring them to their knees.  But I tolerated it and to a certain extent, became immune to that level of pain.  Because there was nothing I could do about it.  I was also 16.  Invincible and wanting to keep up with everyone around me.  Even at that point in my life, there were great expectations of me and I was to deliver, no exceptions.  Now, I have a husband who is insistent that I sit/slow down, relax and back off of things.  I don't know how to freaking do this and be at peace with myself.  I am getting my ass kicked on a daily basis, lately.  I don't know what to do.  I am 38 years old!

I admit, I don't like reading about my "conditions". I can't explain why.  I think I want it to turn out differently.  I don't want to read what is to come or how long it will stay.  I don't want to admit that I am like anyone else, because I am sure, in my mind, that I would handle it differently.  I think the words are contagious.  I am the master of my own words and pain and I don't want to read them elsewhere...written by someone else.  I get scared and angry when I read something I totally relate to, which is a lot.

For those who don't suffer, but know someone who does, please understand and keep these things in mind:

RA does not effect everyone the same.  There are different degrees and advancements.

RA and arthritis are NOT the same thing!

The person with RA is most likely NOT telling you the ugly truth and how bad they are feeling.

Imagine having the flu, every freaking day. 'Cause that is what it feels like, even on a "good" day

Be a bit more appreciative of what efforts are being made to do most anything offered or requested.  I guarantee you, it is greater than you think you understand.  And know that something was most likely given up to make it happen.

People suffering with RA...or any disease, for that matter,  are most likely some of the strongest people you will ever meet in your life.

A person suffering with RA is only doing as well as their rheumatologist listens.  Sometimes rheumys/doctors need to read the points listed above as well.

Having said all this.  I still do not want any sympathy.  Understanding would be the greatest outcome of all.  My problem is that I refuse to explain to the people who need to hear it the most.  I won't give them the satisfaction of seemingly complaining.  I understand that this is coming at the expense of my family and myself. 

I think I need to stop waiting for some to "get it".  Because honestly, I think I am just starting to.  And it has been more than 2 years of living it.

The Funny Side

Let's face it.  If I wanted to, I could sit here and write each day on the woe's of daily life with RA and the strife that fibromyalsia can cause.  But, I don't want to.  Because that would not be a true picture of who I really am.  Sure, sometimes I can get lost in it all, but who wouldn't?  It friggin hurts.  I don't mind sitting here and letting my inner feelings flow through my fingertips to this computer screen.  It can be very therapeutic; and sometimes too heavy.  Even for me.  And I am the one going through it.  For the most part, I have a great sense of humour.  When I've lost that, send help.  Fast.

There is a funny side to rheumatoid arthritis (seriously, funny just happened now as my husband chuckled when I asked, "Do you think rheumatoid arthritis should be capitalized?  Because I don't.  I don't think it deserves it!"...that's a perfect me) & fibromyalsia.  Things happen to you, your mind and your body.  If you can't laugh about it, you will find yourself sinking into a deep depressive state.  I don't know about you, but I choose...funny!

The Funny Side of RA & Fibromyalsia

• The way I tie my shoes:  When I look down at my feet, it reminds me of when I was pregnant.  My shoelaces are tied off to the side because I can't bend to my feet, so I have to bring my feet to my hands.  Anyway I can get them there!  Alright..so there is the belly fat factor too...but still, before my body started to attack it's own joints, I was able to tie straight on!

• Fibro-fog:  This is real.  The theory is that your brain is so pre-occupied with the pain, that carrying on simple conversations or remembering details can be difficult.  I wander aimlessly about the house hoping that something will trigger my memory.  I used to get annoyed.  Now I forget to do that too.

• The joy of stepping OVER objects on the floor:  Because it is simply too hard or painful to bend to pick them up.  Besides, the rest of my family does it... :0)

• The Tin Man Walking.  Watch a person with arthritis get up from a chair.  It's slow at first and then as they start to move more, they pick up the pace.  And then, they slow a bit.  Their bodies need some oiling.  Just like the Tin Man in The Wizard of OZ.  Sometimes, I draw for the children's classic, The Little Engine That Could.  "I think I can, I think I can..."  as I move faster and faster (well, at least for me!).I also have trouble coming to an abrupt stop.  That is most painful on the old joints.

• Hovering is no longer an option.  I HATE public restrooms.  I was once a professional hoverer.  Even after 3 knee surgeries. Now, if I were brave enough to attempt, my body rejects the whole idea of the hover and threatens to drop my area of no public contact onto or, heaven forbid, into the toilet.  It's not good.  I've had to overcome some unpleasant feelings and now I sit.  Honestly, I never overcame the unpleasant feelings.  Like everything else, I deal with it.  Yuck...

• Listening to stupid comments.  One of my favorites; "Wait until you get to be my age and see what it feels like."  What I want to say is, "wish I knew what it was like to be in a healthy 36/37 year old body.  Without RA."  But I don't.  Ever.  In fact I often sit by in silence and listen to others aches and pains(which everyone is entitled to complain about.  I am speaking if the frequent offender who does nothing but complain...over a paper cut!).  They have little of no idea of mine and I most likely will never tell.  Don't get me wrong, there are a select few who really know.  It used to irritate me, now I just smile inside.  This is mine.  Because I am strong enough. 

•  The Dropsies.  I drop things.  A lot.  The kids and I make jokes of it.

I have to laugh, I choose to laugh...as much as I can.  And when I can't...I seek support to get me back to laughter.  Even if for just a moment. It's a moment RA can't have!

Believe it~or Not!

"I believe what you have is something called Fibromyalsia."  These are the words that were spoken to me last October by my primary care doctor.  After more than a year of not being well, without obvious reason, this is what he came up with.  I was pissed. 

Although I understood that, of all the other illnesses they were looking at (RA, Lupus, & MS), Fibromyalsia would be the best of all the circumstances.  It has no long-term damaging effects along with no impact on lifespan.  We'll talk later about the impact fibromyalsia undeniably has on day-to-day life. So this diagnosis was good, right?  Wrong.  Like I said, I was pissed.  I thought that this diagnosis was thrown at me because the doctors were at a loss and had no other answers(which was partly true).  I didn't believe this was a real condition.  I thought it was condition that better served the drug companies than anyone else since there were not any concrete tests that could prove it really existed.  I refused taking medication for it.

Fast forward a couple more months.  I had been put on steroids a while back.  The idea was that if after taking them, I found great relief, red flags would go up.  Red flags sailed high and nearly blew of the flippin' poles.  The response/relief was immediate.  The problem was, getting me off them.  Now we were trying a very slow wean, one that would take 3 months.  My final dose came just before Thanksgiving.  My body was crashing.  Hard.  I couldn't move.  I had bilateral joint pain, all over.  Moving was so painful, I just laid there wondering what in the hell was happening to me.  Since I responded so well to the steroids initially, I was referred to a rhuematologist.  I made a call to him and he said, "this is rheumatoid arthritis.  We are going to have to get you on something else."  I had been taking the introductory dose of methotrexate.  When I came down off the steroids, it was clear that the introductory dose was not enough.  He would increase that, place me back on the steroids and come January, I would start bi-weekly injections.  It is August and I have yet to be off the steroids.

"I have RA." I would reluctantly tell nurses and docs when they would ask about the several meds I have been on.  Never really would mention the fibromyalsia.  I even asked my primary if we were dropping this.  He said no.  My rheumatologist agreed.  It stays. I still didn't believe.  And then, one day at my ob/gyn visit, I asked her, "do you believe in fibromyalsia?"  She looked at me and answered very honestly, "At first, everyone I encountered who had fibromyalsia always seemed to be these depressed, woe is me types.  There just wasn't enough information out there.  (She then went on to compare it to disorder that was highly publicised and seemingly over diagnosed). Now, we have more information and yes, I do believe it is a true condition."  She gave me a lot to think about, but I still wasn't convinced.  And then...

Here you go, Jill.  I met an old school friend out one night while she was in town.  And while, for the most part, I would prefer not to talk about all my ailments, Jill genuinely asked (I am not surprised, she has been so supportive) and wasn't satisfied with  my standard answer.  She asked if I had ever been tested for fibromyalsia.  When I told her I have and do have it she told me of a friend of hers who also has fibromyalsia and didn't talk about it either.  She encouraged me to reach out this person for support.  In that moment, I had no interest but was touched by Jill's interest and genuine concern.  For some days after, I kept replaying her words about not wanting to talk about it and understood that she was right.  I didn't want to talk about it.  I didn't want to give it life.  Because I still didn't believe it was real.

I gave into the new drug.  The one that would serve as a nerve blocker and address the fibromyalsia.  The disease I didn't have.  The disease I didn't want to believe or admit I had.  Because there seems to be such a stigma attached to it.  I felt it was a disease for the weak, mentally and emotionally unstable.  I thought that my doctors believed all this to be true of me.  I saw the adds.  Some of them are anti-depressants(not the one I am on).  I am not depressed.  I hurt all over and am exhausted, but damn it!  I am NOT depressed. Pissed!  Are there any anti-pissed drugs out there that claim to ease the symptoms of not being heard, understood or truly listened too?  Yeah. I thought so.  The few times I would admit that I had "it"  I could feel my jaw tighten and my fingers curl to a a pathetic fist.  I hated saying it.

I have Fibromyalsia.  I also have Rheumatoid Arthritis.  Both are invisible illnesses, for the most part.  Did  you read that?  I have Fibromyalsia.  Fibromyalsia is cringing when someone hugs you or when your children want to crawl up on your lap and every muscle in your body tightens in the painful anticipation. I take it anyway.  I can see them being more careful, despite my best efforts, it must be written all over my face.  It is the lingering pain, for minutes after, when someone pokes you to get your attention.  It is the overwhelming exhaustion (also a complication of RA) that hits you at several points in the day, sometimes all day or even, for days at a time.Fibromyalsia is the pain in my neck shoulders and several other muscles for no good reason at all.  Fibromyalsia is nerves that are constantly misfiring.  Fibromyalsia is pain.  Real, I believe in it, how am I ever going to get out of this bed and make it through the day, pain. 

It took a conversation with two friends, one a pharmacist, to make me reconsider past conversations and solutions with my doctors.  It also took a good look at what was really happening.  As I sat there in disbelief that I had to now rely on two pill boxes, I took a look at all the prescription bottles sprawled out before me.  I heard my best friends voice, "If they [the doctors] didn't think you were sick, you wouldn't be on this..."  Three times I went to pick up the phone to let my rheumatologist know I was ready to give in and accept the medication.  He assured me at my most recent visit that it was important acknowledge both diseases for effective treatment.  I want the best treatment I can get for the RA.  Even if it means admitting having something I haven't always respected or understood.

My name is Rachel and I have Fibromyalsia.  Believe it~or not!

K.M.A. RA & Fibromyalgia!

If you have been following all along, you know that the original idea for this blog came out of some encouragement from a few friends and the unexpected shock when I caught a glimpse of myself in a mirror at a store.  My very large self.  I wanted to write out everything that I, as a fat person, felt.  I knew that I wasn't alone and wanted to be free of the emotional and mental weight.  I wanted to reach out to the many different shaped and sized out there and help free them from that isolated space we all lock ourselves into.

Never tell God your plans.  He will laugh terribly hard.  Prior to that fantastic plan I had, I was pretty sick.  And I have never fully recouped from that.  It has taken nearly two years for it to be discovered that I have fibromyalgia and rheumatoid arthritis.  Together.  I was knocked on my ass so hard I seriously didn't know what hit me.  Doctor's were scratching their heads as test after test came back "normal".  In the meantime, I was not functioning well at all. The only people who really knew what was going on were a select few.  How the docs finally came to the diagnosis is a long story.  It doesn't matter.  I have it and there are plans in place to deal with it.  I am finally on board and no longer in denial.  I do my research and actually search for information (in the past, I wouldn't.  Didn't think I had the right to without a proper diagnosis.).

My story is not over.  Yesterday I had a discussion with my rheumatologist about exercise and when I can expect to push harder.  He tells me that the weight loss is going to be tough because of the limitations the two diseases can cause, not to mention the steroids (I have a love-hate relationship with those damn things!).  In that moment, it occurred to me that I am NOT alone in this.  There has to be, just as when I was just fat, many out there in my situation.  I am back in the game.  My story is far from over. 

I plan on beating the living hell out of RA & fibromyalsia, just as they did to me.  Recently, someone told me I am a fighter.  I am, damn it.  In every other aspect of my life, I am a damn good fighter.  I've been given some tools to fight this and there is a lot that is left up to me.  Just as I NEVER called in sick to work and almost ALWAYS tried to go on and continue as though everything was normal when, really it wasn't, I will fight this with all I have.  I know there is nothing I can do to make it go away, but I can make it cower daily.

For those who have ever or do doubt my strength(largely myself!), this is who I am.  I am the mother of three and caregiver to many, old and young that ignored symptoms that shouldn't have been ignored.  Until the day I was taken into the hospital.  Even then, I fought being there.  I had things to do. I refused to give up commitments because I didn't want to let anyone down.  I refused to let on how bad I was feeling.  I am the wife who laid in bed after making it through the day with a jerking body because my kidney(s) would spasm so badly with infection.  When I would finally walk (crooked) into the doctor's office, they gave me shots of tramadol.  At least 9 times I went through this.  During one of these infections, I crawled through Darien Lake for an entire weekend, refusing a wheel chair.  I had fevers, pain, extreme fatigue.  When I say crawled, I am not exaggerating. Thank God for the stroller that supported me.  I made it through organizing parties down to the tiniest detail, holidays at our home and would immediately be down for 3 days or more after.  I NEVER called in sick.  I dragged myself, again, through an amusement park on feet so swollen they almost didn't fit into my shoes.  I refused to let my children down.  I get angry at the idea of having to go into the hospital because I don't want to be pinned down for anything minor.  My thought is, it better be pretty bad, or I am not going in.  Often I struggle with the idea of having to call something in.

And so now it occurs to me,I have to fight this weight thing like I fight these damn symptoms that should have had me laid out and resting.  It won't be easy.  But if I can push through an amusement park with a fever and kidney spasms, why can't I push through a walk up our road?  Eye if the tiger, baby.  All the doctor had to do was tell me it would be a challenge.  I am ready.

I am ready for proper nutrition and rest.  Proper exercise and healing. Every inch that is blasted, is an inch RA & fibro doesn't get to latch on to. There will be setbacks.  I have leaned that.  But they will be temporary.  Shortened lifespan.  Yep.  It will be the healthiest one if that's the way it has to be.  Kiss.My.Ass. RA & Fibromyalsia!