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Saturday, December 31, 2011

2011 in Review

2011 has been a pretty great year.  The year started out with some necessary roughness.  Enough to get me a diagnosis and treatment.  Treatment that made me feel well enough to enjoy the year that was to come. 

I learned to let go (not entirely, I am still working on this) to allow myself to do more.  It is no longer all or nothing.  It's now a little bit is something.  I was reminded of how good I have it.  Husband, children, family and friends. 

We camped  a bunch and went on real (to us) vacations with friends and family.  We even got to spend a week in Virginia Beach with my sister and her family.  While there, actually when leaving, she gave me one of the biggest gifts she ever could have.  Her tears touched me and connected me with her all over again. 

I became an Aunt, again and found out I would be once more later.  I made great connections with old friends and enjoyed visits with them when we were in the same town(s).

We went to concerts with friends and had a blast.  I danced.  It hurt real good.  We took the kids to see The Lion King.  While there, I watched Ethan grow a little as he explained to his little brother that the man with the sleeping bag most likely had no home and would have to sleep outside.  In that moment, I appreciated all that we have been blessed with and felt guilty for it and then fortunate that my children were safe and warm...and very kind.

I watched my children grow another year.  It doesn't get much better than that.  I fell in love with my husband more and understood how great his commitment to me and our children is as he filled all the roles I wasn't able to without a single complaint.

Life is never easy.  But it is certainly beautiful.

Happy New Year all!  I hope the year ahead is good to you and your needs!

One Size Does Not Fit All

While on the phone with the pharmacy representative in charge of filling my prescription for Humira, she asked me one of the standard questions they always ask.  "On a scale of 0 to 10, 0 being none at all and 10 being the worst, how would you rate your pain?".  I freaking hate this question.  I never know how to answer.  I hurt all the time.  So zero is not an option.  Five seems like I am just not happy and anything higher, sounds like I am complaining or a hypochondriac.  I usually say 6 and hope it's just a formality because I am not sure what they or we are supposed to base it on. My pain scale would be radically different.  Questions, not numbers.

What is the base for your pain?
  As a general rule, there is a burning that is present or an ache, somewhere, almost always. That is what "1" would be.  The base, if you will.

What is your best time?
I would need someone with computer animation talent and a stopwatch to help with the next.  How slow am I moving or getting in and out of a chair?

Do you need a GPS with Traffic Alert to navigate your own home?
Can I maneuver between a child and a boot on the floor with ease (nope)?  Can you pass me by in the hallway without setting me off balance because I am so stiff with pain (again, nope)?

How are you carrying on conversations?
I would want to be asked how often I am silent.  That is a HUGE indicator.  Sometimes, the pain is so bad, I can no longer distract myself from it.  I can sit in a room full of people I know very well and have nothing to say at all.  That happened this Christmas.  I sat at the table and the pain coursing through my body was so intense, it was all I could do not to put my head on the table, right there, and cry.  I felt like an awful hostess. I thought for sure that they could see that I wasn't listening to them at all. 

Are you a glutton for punishment?
Yes.  I would rather stand (OK, lean) at the kitchen sink doing dishes and then move on to another task nobody in their right mind would do with the amount of pain I am feeling than sit and "relax".  Because, contrary to what you may think, for me, sitting in pain is worse than moving in it.  Notice I said, in it and not through it.  Through it would indicate that the pain passes.  It has not.  I need to be distracted.  My feet are bad.  Real bad.  But the counter pressure from standing on them is better than the stabbing, throbbing, indescribable pain when I finally sit.

Where are your emotions?
All over the freaking place.  I don't know what to say.  To live with this type of pain every moment, every day wears on you.  It is exhausting.  In. Every. Sense. Of. The. Word.  To try and maintain a "normal" lifestyle is...exhausting.  To pretend that the little things don't get to you; especially the pieces of yourself you feel are being chipped away...every day.

Can you complete a sentence...with all the words?
Nope.  Too much pain on the brain.  Processing is a problem. 

How is your tolerance for noise?
This always depends on the kind of day I have had.  If there has been opportunity to rest (ha-ha-ha-ha), I can take it.  If not and it has been a rough day, fogettaboutit!  Sometimes, I startle easily with the most common noises in a house with 3 children and 2 dogs.  The startle makes me jump, the jump makes me hurt, the hurt makes me cranky. 

In all honesty, unless you have a doctor who is willing to really listen and get to know you, there is no perfect pain scale.  Everyone is different and carries a different pain tolerance and response.  I feel that finding that balance between our trust for our doctors and the honesty with them as well as ourselves is key.  I want to tell my doctor how I am really feeling.  But I have to trust that they know I am not exaggerating.  The midwife that delivered my children knew this. She knew enough to get in my face and tell me I wasn't earning any medals by putting myself through more than was necessary.  This was during labor, a gall bladder attack AND a fourth degree tear!  All happening at the same time!  She was good awesome.  Why can't she be my doc for everything?

With everything that I have been through in the past couple of years, I sometimes think that maybe I am just a wimp.  Maybe I have a little pain and I just am handling it poorly.  And then, just as that thought crosses my mind, my body screams it's painful reminders.  No.  This isn't little, this is big...and real.  Real Bad Pain.  There is no scale for this.  There is no "One Size Fits All"

***This post is part of a blog carnival.  Please check out this link for more stories, thoughts and ideas about Pain Scales. .

Kelly at Rheumatoid Arthritis Warrior has done a wonderful job of pulling these blogs together for a wonderful and informative presentation.  We all appreciate her dedication.  Please stop by!

Tuesday, December 27, 2011

Hanging in There

I just wanted to wish everyone a (belated) Merry Christmas.  I also wanted to acknowledge the comments and e-mails I have received from several of you.  Thank you and I will respond shortly.  Currently, things are a bit rough and to type this is quite the painful chore.  I over-did it for Christmas festivities.  In addition, I have been taken off the Humira injections in preparation for the infusions that are to start January 6th...ugh.  That is a long time away in RA land.  But, I am doing fine and taking it slow and easy.  I am very much looking forward to the infusion.  I hear that I may actually feel a difference THAT DAY.  The only time I ever felt instant relief was when I was put on a good dose of steroids for the first time.

Your comments and e-mails always mean so much.  To be able to reach out and have you all reach out to me is beyond comforting.  Thank you so much for your continued support.  I wish all of you the moments of relief we all hope for.  I will be back soon!  Until then, be kind to yourselves.


Friday, December 16, 2011

Shoe Stress

When you are fat/obese/overweight/large/big-boned or whatever you want to call it, there are restrictions on fashion.  I personally believe that there is a certain point where anything spandex should not be an option(the exception being when we are exercising and working to shed those L B S's!~).  And if you choose to wear a thong or g-string, you should be sure that the strings are visible...and not lost in the folds of beautiful fat.  Those are rules that I have set for myself.  If, by some chance you feel good wearing these items, then by all means, go for it. 

I have been fortunate (or unfortunate) to be on both sides of the scale.  At one point in my life,the numbers on the scale weren't an issue.  Pretty much the only time they affected me was when girlfriends would talk about what they weighed.  I may have checked then.  Honestly, I was so over the diet/scale talk since in my house, my parents were serial yo-yo diet offenders.  I had no intentions of following in their footsteps.

Going clothes shopping was fun and I never thought twice about what size to pull from the rack.  Crazy enough, the fashion at that time was...HUGE!  Meaning, you wore your father's t-shirts and pulled your pants down onto your hips.  Then,  Hammer pants were all the rage with cropped tops.  After graduation, grunge was the in-thing.  I wore it all.  And what a WASTE!  Those styles hid a figure I had no reason to be ashamed of (though I am sure I wasn't in love with at least one part of my body!).

For more than 15 years, clothes shopping is not fun.  When you are overweight, the options and styles are fewer.  We are not all shaped the same and sometimes, it can feel like you are wearing a tent.  Or worse, that all anybody thinks is that a tent is all you deserve to wear. I am picky and when I am out, I do not want to be wearing anything with an elastic band! So it is terribly hard for me to dress this body.  There are some favorites...Target has jeans that come in SHORT sizes!  Though, I am limited to color and style(that is not the case if you are a size 16 or smaller!).  But they fit and I don't have to cut off the length.  That is important, since my shoe selection has recently been limited as well.  Kohls also has a wonderful selection.  Most times, I can go there knowing that I will find something I like, that fits!

Of all my close friends, there is only one that I can think of that loves shoes as much as or more than I do.  I simply love shoes.  And while in the past I was limited slightly because of knee issues, I would always find a cute shoe or boot that I loved.  This is no longer the case.  In the summer, my feet were so swollen that I couldn't fit into ANY shoe.  Even the ugly crock.  Ugh.  Flat shoes are a huge problem, since they offer no support or cushion.  And yes, I have tried the insoles.  They used to work, but not any more.  I know that there are stores out there that offer shoes for people with arthritis.  But they offer no style. Sadly, I may have to succumb to this because quality of life is becoming an issue. 

I understand why the companies that offer these shoes limit style.  I am sure it would be pricey to try and keep up with the trends.  But, for goodness sakes, at this point, I would pay a bit more for a fashionable shoe that I can comfortably wear!  For the first time EVER...I spent over $80 for a pair of shoes.  They offered comfort and some basic style.  I am to the point were I HAVE to spend more on a better made shoe.  But they can't be heals, or too flat, they can't have straps.  Basically, they can't be all too cute.

Tomorrow, we are going on a shopping trip with a large group of close friends.  I will do my damnedest to keep up(a wheelchair is NOT an option for this girl!).  This means, I have to ruin my ensemble by wearing sneakers.  That most likely not get me more than a maximum of 20 minutes at a time on my feet.  But they are my only option.  I feel the same about sneakers with the wrong outfit as I do about spandex and g-strings.  At some point, they should not be worn.

I have overcome the clothing issues.  But my feet...I just can't get around this one.  Sometimes, they hurt to touch.  They hurt so bad that I want nothing more to have them rubbed.  I have learned to not ask, because to have them touched is sometimes unbearable.  I feel like I have overcome and found a way around so much, but this...I just can't.  And for now, there is nothing that can be done.  Except to find that perfect pair of shoes that is not a sneaker. That can make me feel pretty.  That doesn't result in me walking like a 100 year old woman clinging tightly to her husbands arm and trying to hide with each agonizing step, the pain this is most likely written all over her face.

To some, this may seem like such a small issue.  And they are right.  I could just wear sneakers all day(even though they aren't all too much a comfy solution either), every day and be happy that I can still walk, even if for a little bit.   But, there is something about finding that cute, perfect and stylish shoe.

There has been a huge shift in the self-image department for me.  This is the first year, EVER that I included myself in our Christmas card picture.  In the past, I may have been in one, but only close family saw it.  This is who I am.  Steroids and all.  RA and all.  This is me.  Larger than I want to be...but loved more than I have ever been in my life.  Accepted more.  Fat, bloated and slower than ever.  This is who I am.

I don't mind going clothes shopping any longer.  I am sure the 25# loss and shrinking boobs have something to do with it.  But I don't mind it like I used to.  Until, I need to find the perfect pair of shoes.  It is hard not to get a little down when your hair and make-up look great and you have a cute outfit...that you have to finish off with a pair of...sneakers.

Because I want to enjoy my friends and try to get into the holiday spirit, I will lace up the New Balance beauties and suck it up.  At the end of the night, the laughter I am sure to experience will likely be worth the vicodin and day or 2 down with feet elevated.  My search will continue for the perfect shoe.

Monday, December 12, 2011

The Gift of Understanding

All Sunday I was burning to sit and write.  Usually when that happens, it just...happens.  I sit and I write with little to no editing.  It's easy.  Last night, I sat and couldn't get anything out.  Anything that made sense.  I didn't want it to be about whining or complaining.  I wanted it to inspire others to be more understanding.  To stop and consider for a moment where someone else is at.  Instead of clouding it with where they are at and carrying on with assumptions.  In the end, I wanted to encourage everyone reading this to go forth and put themselves in another's shoes.  Ultimately, I wanted everyone to make an effort to practise The Golden Rule.

This post would not have happened had I not read some posts and links on facebook.  One post read something like, 'do not assume to know what is going on in my home...'.  And then there were the last two posts from  One was a public service announcement ( and the other was from her blog which spoke on some misconceptions of RA.  It seems that there are many out there having some of the very same feelings I am.  Some for the same and many for different reasons.

This is supposed to be the season of giving.  What we need to give more of, has nothing to do with what is in your wallet, the bottom of your purse or the color or interest rate of the card you swipe.  Understanding is clearing something that is needed by many.  Before you sit and judge someone, put yourself in their situation for a moment.  And then ask yourself and be honest about how you would feel or react if it were you.  Those who are not honest think that [in most cases]they would deal better...I challenge that.  They should ask themselves if their arrogance comes from knowing that, indeed, they could not or would not be able to handle it half as well.  This weekend, I understood that to be very true.

RA is NOT just arthritis!  Damn it.  It does come with greater complications and concerns.  There are several degrees that can affect each person differently.  Not all drugs work for everyone.  Sometimes they don't work, at all.  I didn't just wake up one day and decide to change who I was to the core.  I got knocked on my ass.  And even at this stage, I am still functioning at a greater level that some ignorant people could ever wish. I push myself to achieve more than I physically can...almost every single day.  I am chomping at the bit for my body to be strong enough/healthy enough to keep up with my over-active brain.  I fight off fatigue, exhaustion and low-grade fevers all the time to accomplish all I want and need to.  Remember what it feels like to be home, in bed with a cold or the flu?  That run-down, achy all over feeling?  That is almost every day for me.  It is the norm.  I don't get to call in.  I push through.  I am every employers dream, in that aspect.  My body is under constant attack...from itself.  It is almost always in fight mode.  I take several drugs to suppress this.  I self-inject and soon will start infusions.  This is something almost every person you know with an autoimmune disease does.  This is something they live with every day of their lives.  I write this for them as well.

I heard it this weekend.  "I know LOTS of people who have ra and they are fine".  Fair warning, next time I hear!  Who the hell do you think you are?  'Cause here is a fact, I have RA and not many people (aside from some family and friends), really know how I am.  It is an effort, but damn it, I'll make that effort to appear as though I am perfectly..."normal".  Yeah, to those I encounter for a few short moments in a day, I am "fine" too.  I assure you, fine is far from fact.  How dare you say this to me?  As if I am not trying enough or sucking it up enough?  You say this because you really don't know me very well.  Or, because you are intimidated by the person I am despite having RA.  That's why.  Screw you.

For a few short moments, I felt weak.  Then I heard my husband calmly commenting, coming to my aid. "How long do you have to lie there before getting out of bed in the morning?/How many times have you gone to the ER for kidney/heart/lung issues related to your arthritis?/What medicines are you taking and do you have to have your organs checked for damage done to them because of these meds?"  He had others and I know he was trying to prove a point.  In this case, he was beating a dead horse.  Because there is no understanding.  And there never will be.  I have to learn to accept that. It is just hard for me to when I feel that someone thinks that I am not trying or that I am making something out of nothing.

Too often, in life, we make assumptions.  What I am asking in this season of giving, is that we all make an effort to assume a little less and try to understand a little more.  Learn a little more.  Love a little more.  Be kind.  That's what I tell my kids.  The truth is, none of us can truly ever understand what it is like to be in someone else's shoes.  But, we can try.  There is no benefit if we don't.  No lesson's learned, no respect earned. 

Friday, December 2, 2011

The Most Wonderful Time of the Year

This is supposed to be my time if the year.  I love Christmas.  I holds so much magic in many ways.  Even during some rough patches in life, Christmas seemed to make things stop, at least for a couple magical days.  That has a lot to do with my mother.

She decorated the house with great care.  Baked and decorated cookies and other treats for endless hours.  Christmas cards, gift buying, hiding and wrapping and menu planning for HUGE holiday meals for many.  She and my dad also would put together a meal and some gifts and deliver it to a needy family.  The world could be crashing down all around us and somehow, my mother managed to make most of December, wonderfully magical.  I love Christmas because of all she made it for us.  I have terribly great expectations for this season.

When I was on my own, I continued the traditions.  I even had a mini tree that plugged into the lighter in the car and lit up.  Christmas music was NOT to be played until after Thanksgiving.  That goes for any Christmas specials too.  I decorated and baked and cooked and was giddy with excitement at the thought of all the gifts I wanted to give.  It was no secret that I LOVED this holiday.

I bake with our kids, do crafts and decorate.  All the while trying to remind them what Christmas is really about.  And when I say bake, I mean my ass off!  I look for that same glimmer in their eye that I (used to) have.  I want all the magic for them. Like it was for me.

Lately, I feel like I am going through the motions.  By Monday, you won't be able to guess how I am really feeling.  The house will be decorated and most likely, there will be several batches of dough in the fridge waiting to be rolled, cut, baked and decorated with care.  It will all look...perfect.

Unfortunately, this time of year is magnifying all I try to deny each day.  Including how much I am unable to do on my own and how much things have changed.  How angry I am that I have to accept some of this.  And it certainly doesn't help when people comment on how the decorative cabinet on our front porch isn't yet decorated(I've just removed the fall decor from it).  I know they mean well.  They are used to me being on top of it all and have no idea what is actually happening here.  Which is fine, I don't want pity on my doorstep. And it also means I look like I am managing really well.  Can't have it both ways, I guess.

Truth is, I want to scream out how much MORE I want to do.  How I hate that I can't manage the attic stairs anymore.  How I HATE having to wait on someone to do something I used to be able to do just fine on my own.  I am panicking because, those cookies, need to be baked in the oven DOWNSTAIRS since our oven upstairs is broken (I know, we are lucky to have another) and that many trips up and down...not happening.  I am so afraid of not being able to pull it all off.  I know that things have to change, but, I don't want them too. Not this.

I keep telling myself that if my mother could pull it off, I can too.  The only problem and difference is that her obstacles weren't physical ones. I know that I have been demanding more of my body than I should lately because I am feeling it.  Christmas is here and there is so much to do and I am not sure how I am going to make this happen.  I am not sure if I will be able to deal with the comments that may come because I forget or let a detail go.  I feel like it will all be over and I will have missed it...all of it.  Because I can't find the balance.

While I am thankful that I am feeling "better" this year than last, there is a great amount of discouragement and frustration too.  Last year at this time I was physically hurting and had unbelievable exhaustion. And yet, I still managed to pull it all off. Including a Christmas party for the fireman and their families. This year, thanks to a diagnosis and ongoing treatment, the exhaustion has (mostly, I still struggle with it)lifted.  The problem is, now that I am not too tired to do things, my mind is racing with all that I want and have to do, but my body does not follow.  It hurts and limits.  I need to find a way to deal with this and would greatly welcome any suggestions.  On a daily basis, this is hard for me to accept.  However, at this time of the year, it is...I can't even describe how it feels.

To keep everything in perspective, I have a list that is full of blessings.  I can put my feet to the floor and walk.  I can still type and write. I can, I can , I can.  I try to make myself more than aware of all that could be.  I am not a soldier away in a foreign country, away from all I love.  I am getting treatment and it could be worse.  These and many others are things that I tell myself every day.  Every day.  Sometimes to the point of feeling so guilty for all I have, I could cry.  But it still stings.  I am still learning to accept. 

I don't know how to live in this place.  By nature, I am a nurturer, a pleaser. I feel like my ability to do these things, that I have either always done, or grown into doing are being taken from me.  Which means that I am limited in what I am able to give.  I am not OK with this. There is so much that I want and need to do.  I don't think it is unhealthy.  I think it is what comes naturally to me.  It is so frustrating.  And I know that my pride sometimes gets in the way of what I should do versus what I want to do.  I am afraid that if I let go a little, what will stop me from letting go all the way?  Who am I then?

I know that these struggles are not unique to only me.  I know that there are many Mom's and Dads that are trying to pull it all off as well. I know (all to well) the financial limitations and worries too.  I know that some parents won't even be able to celebrate with their children and/or families.  Heartbreaking.

I understand that this time of the year is a hard time for many reasons.  I am sure it has to do with the expectations and demands we place on our own.  We expect it to be like a dreamy, snow-filled scene in a movie with Christmas bells playing in the background. There is that commercial from Target where the woman closes the door after her guests from Thanksgiving dinner leave and turns to find that her whole house is beautifully decorated.  Jealous.  We expect that all the negatives in our lives will suddenly become positives.  We think that those people in our lives who have wronged us in some way are suddenly going to wake up and make up for it all.  If nothing else, we hope that it will be a pause in our daily lives.  We try to cram all this good into a few short days, maybe a week.

For some, that is the magic of Christmas.  And I can't say that they are wrong.  As humans, we need those toasty warm connections.  We need to be reminded of who we ought to be and how we should treat one another.  How wonderful it truly is to give, than to expect or demand. 

When I was young Christmas held so much for me.  Joy, hope, love, acceptance and happiness.  Anticipation.  And of course, there was Santa and presents.  And so much fun with cousins on Christmas Eve while waiting for Santa in our newest pajama's.  Those precious memories are so wonderful to hold.

I don't ever want my children to look back on any of their Christmas's (or any day for that matter) and have it marked by, "oh we couldn't do it that time because Mommy...".  I want the same warmth to wash over them when they hear a Christmas song or see the first lights of the season.  I want it to be so wonderful that they want it all for their children too.  I want all the magic for them.  Aside from my sisters, the Christmas Spirit was one of the greatest gifts my mom could have ever given me.  Thank you, Mom.

Now, Lord, help me to learn and give me all I need to get through this.  I don't want to lose the gift of Christmas.

Tuesday, November 15, 2011

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.

Friday, November 4, 2011

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.

Wednesday, October 12, 2011

Too Close for Comfort

For as long as I can remember, I was that girl that would look into the windows of houses as we drove by or to the cars alongside us on the road and wonder, what was really going on in their lives?  I always wondered what celebrations, acts of everyday life or awful truths were going on behind those windows and doors.  I knew better than to assume that the grass was greener.  And I have always tried not to use the phrase, "must be nice".  Because you just never know.

Lately, I wish I wasn't that girl.  I sit in our living room or pass our window and can see the house across the street, our good friends house, and my stomach flips a bit and I have to fight the tears that are at the surface.  I know all to well what is happening behind those windows and doors.  Heartache.   

I was in the shower and my thoughts wandered to our friends and their family.  In particular, their sister.  I thought about her in her hospital bed and all at once I couldn't hold back the tears.  I wondered what she must be thinking and how badly she must wish she could wake from this nightmare and return home to her children.  Her four children.  The youngest, nine.  My Ethan is nine.  I couldn't imagine leaving him behind or bare the thought of someone telling him that I did.  I can't imagine that for any of my children.  But having the similarities in age hit too close to my heart and it was breaking for those children and their mother.

I am not close with her though we've spoke several times.  And shortly after I met our neighbors, they told me that I reminded them of their sister; certain characteristics anyhow.  I know her children better, especially the youngest.  There is some distance, but clearly not enough because this hurts, for several reasons.  One of them being the feeling of helplessness. 

What makes this so hard (for me...and this isn't meant to be about me) is that this is a story I can't skip over or an article I can't ignore.  It's a familiar scene that gets played out in the movies, except it's a movie I would most likely never buy a ticket to because even watching it is painful.  I wish she could swing her legs out of bed when the sad scene was over, call for a Manhattan to drink and her stage make-up to be wiped off.  I know what the reality is.  This is a book I would never choose to read either.

I'm not close enough to help in a big enough way, yet I am not far enough away not to feel some of their pain.  I know too much and it seems inappropriate to be this sad.  The sadness isn't for me, entirely.  I understand that some of this comes from past losses that I am sure I held back for.  So much of it is for the pain that I know everyone is feeling. I have the same thoughts, concerns and worries that I am sure they do as well.  There is a common pain.  More common than it should be.

So tonight, I went in and kissed each one of my children while they lay sleeping in their beds, again, because I could.  My life meant little to me before I had children.  I understand my importance in their lives and I try not to take that for granted.  I don't know what God's intentions are in this situation.  I don't understand why four children may have to be motherless sooner than anyone ever should.  I want to believe what my best friend says about God having a better plan. She should know, she lost her mother more than 9 years ago.  I want to believe that there is a better place.  But I worry that the children won't understand this.  And even if they do, I can't help but think of the awful sadness in their poor little hearts. I wish I could take this from them. 

I know that their mother will be alright.  I imagine these past months, actually year, have been more difficult than any of us could imagine.  In time, things will get easier as everyone learns to navigate the loss. The sadness will come in waves.  Slowly, life will return to a different kind of normal.  For now, there is great discomfort and we are reminded how precious and fragile life is all at once. 

I will continue to hold firm in my faith and pray for what ever God thinks is best.  Clearly this is a book I am not allowed to close without finishing.  I am sure there is a reason for that.  I will be there for my friends. Right now, I am going to go and kiss my sleeping children once more....

Thursday, October 6, 2011

Helpless In the Wake of a Thief

Cancer. The word makes me cringe. Makes me angry. I can't bake it away. Can't joke it way. Clean it away. Talk it away. I can't take it away. I can't do anything. I can't fix this. I can't fix the hearts it breaks or the many tears it makes. I HATE cancer. It is by far the biggest thief I have ever heard of or known.

Where there were happy conversations with ease, it sneaks up and makes for hard talks and quivering voices holding back tears. It ends conversations. It ends relationships. It robs Children of their Mothers and Fathers and Mothers and Fathers of their Children. Aunts, Uncles, Cousins, Grandparents, Friends and Beloved Pets. You name it. Cancer takes it. And it doesn't do it with compassion either.

I hate cancer. I hate that my best friend should have been celebrating the joy of her first pregnancy but was blind-sided by the news that her mother had ovarian cancer. And that I remember when I was pregnant with my daughter because it was the year I thought I would loose my Aunt and Godmother. She survived to meet my Emily. But I can remember how long a very close friend's mother has been gone, taken from us by cancer, because Emily was two weeks old when we attended her funeral. When I called to announce to my Aunt (the survivor) that I was pregnant again, she was dying and gone the next day. I was six months pregnant when I delivered her eulogy.I remember how long my best friend has been without her mother because my son was born days after I attended her funeral. It was our third child's first birthday when we heard that another wonderful Aunt had passed away. From cancer.

I remember the only tears I ever witnessed my Gram shed. They were for the loss of her daughter. Cancer broke my Gram. And it took her sister too. I remember the broken boys (grown men), sobbing for their mothers. For their great losses. I saw my friends break. I remember the helpless feeling. I could do nothing. Nothing to take away the pain. There is still nothing I can do. I can't fix this. And it keeps coming back.

I have great admiration for the Survivors. Both the ones directly infected and the loved ones left behind. They make for great fighters, informers and supporters. I am just sorry for all that they have lost. I hate cancer.

Party In My Closet

I just had a party in my closet.  At 7:00 a.m. I woke up and decided to try the scale.  Holy crap!  Another 5lbs! FIVE!  I usually don't get excited about this until I see it stick for a couple weeks.  But after the jeans episode this weekend (I was surprised to find that I could glide into them effortlessly), I decided that I should just check.  Five pounds.  Gone. Zapped.

This was the kind of party where only I can hear the awesome music, because it's all in my head.  This time I let my fingers skip over the "safe" tops and shirts and stop on the "If only" ones.  A couple of them fit so well that they were almost a bit too big in some areas.  I was stunned.  There was a day that I would pull them on with great hope and know before they got over my head that it was going to be a sad fit.  Now, I wondered if they were even the same shirts.  I pulled on another.  This one fit better, but not quite right.  Yet.  I have decided that this will be the one I will wear for Thanksgiving.  The feeling I had was entirely different than the last time I tried it on.  I was optimistic.  I can do this.

Then, I looked down at my feet and ankles.  Hello there!  I have toes, not sausages.  And LOOK!  There's my ankle bone.  Oh!  Wowwee!  Check out those beautiful bulging veins!  Let's try those cute slip on Sketchers that haven't fit in over a year.  YES!  There is actually loose skin that wrinkles up when I flex my feet.  I love it.  Because it reminds me of how swollen my feet have been for so long. 

I invite my loving husband to the party.  "Look!", I tell him.  He's excited, but not nearly as much as I am.  He's more concerned about how badly my hands have been hurting and wonders why my feet are so much better.  I don't want to ruin the mood by admitting that, although my feet look a-may-zing!, they are still very painful.  Why worry him?  I have come to terms with the facts.  This is what life is like.  What it will be like. It has taken me a long time to truly accept this. And this is my body.  To ask or expect him to accept it at this point is unrealistic.  I encourage him to check out my curves and I stick out my right foot for him to admire once more.  How I wish I could call my girlfriends, but it is too early.  They would get this and not make it heavy with well intended worry.

If only.  If only I could get off these pesky steroids.  Weight loss and body shaping would happen with greater ease.  Even the doc told me this last week.  "Your blood pressure is down (something I have NEVER struggled with. It has always been crazy low.  Until RA & steroids.) and your weight is down.  That is great.  I want you to loose a lot more weight though.  And that will happen if we can get you off the steroids and get you moving more.  But for now, we can't get you moving more until we get everything else under control.  Once that happens, you will find the weight coming off faster.  For now, South Beach lifestyle and patience.".  You got it, doc.  We are on the same page.  For now.  For now, the steroids stick.  I am on a dose that doesn't mask the pain, but allows me to move.  I could take more, but I don't want to.  I want to get off of them.  I love steroids and I hate them at the same time. 

In the meantime, party in my closet.  :0)

Saturday, October 1, 2011

One Size Closer to Reality

I almost wrote the shortest post ever this morning.  But I didn't have time.  DROPPED A PANTS SIZE!  That is what it would have said. 

One of the most incredible feelings, as an overweight woman, has to be pulling on a pair of jeans with the anticipation of an ugly struggle and getting just the opposite.  The surprise of them going on almost effortlessly.  Oh, what a glorious, beautiful feeling!  For more than a  couple months now, the scale has told me that I lost some weight, but my body took a while to show it.  And it wasn't until recently that I truly believed that I actually lost it.  It wasn't coming back.  Some of the medicines I am on really mess with the scale and it takes quite a while to see what happens when the dust settles.  It's not coming back.  I've lost it.  For good.  I was in love with my body.  For now.

Love your body.  We hear this ALL the time.  We preach it.  We agree it sounds like a good theory.  But, do we really believe it?  I don't.  I know that I have stood in front of the mirror (when I could stomach it) in anger, in tears, in heartache, in mourning, in disbelief and in defeat.  No.  There wasn't/isn't much room for love there.  I would tug, hoist and suck in everything I could and entertain thoughts about hacking of chunks of the unwanted...the ugly.  Thoughts of the "old me" play through my mind and I think of those who knew me when and still wonder what they must think.  In my heart I know it doesn't and shouldn't matter.  But I would be lying if I said it never crosses my mind.

And so today, as I drove through the country, officially ONE SIZE SMALLER!, I thought about stuff.  Weight and body stuff.  The conclusion, I need to love AND respect my body.  For real. We all do.  No matter what.

I thought about all this in terms of, well, cars.  We all have a Dream Car.  Most of us have to live with a Reality Car.  I happen to love my Reality Car, but who doesn't drool over the Dream Car?  But we need to respect the vehicle that is our primary mode of transportation, regardless.  We need to care for it.  Of course, there are always models that are one or three times better than what we have.  They may be sleeker, faster, sexier.  In the end, we need them to get us from A-B.  I can honestly say, looking back, that there was something about each one of my cars, that I loved and missed when I moved on to the next.  Even the two 1970's AMC Concords I owned at different times.  The one that I would shout out the lyrics to Blind Melon's 'No Rain' in.  And the other that was brightest and ugliest blue you have ever seen!  They held memories and had cool features that I liked a lot.  They served me well.  And I cared for them as best as I knew how to so they could continue to serve me even longer.  I have been kinder to my vehicles, than to myself.  I certainly would love a Dream Car.  But I am kinda in love with my Reality Car.  It has cool features, gets me where I need to go...and is actually a nice looking car (as far as minivans go). 

There used to be a thinner model Rachel. I enjoyed her and yet, I can honestly say, that I did not love her as I should have.  I looked in the mirror and thought about different shaped eyes, a smaller nose, less cheek when I smiled, brighter teeth and sure, I thought about being a different number on the scale and smaller thighs.  I was beautiful and so tormented at the same time.  Because I didn't truly love the body I was in.  At the time, I hated myself.  These days, the hate for me is gone...but I have separated myself from my body.  If that makes any sense.  I am OK with the person I have become, but not the body I am in.  I no longer wonder what will be said of me when I am gone, when I die.  I used to all the time.  I know what will be said.  I know what kind of person I am and what is thought of me, today. I now worry, momentarily, about how many people it will require to carry my casket.  Then I remember, I want to be cremated.  No worries.

Though today was exciting for me, I had to make myself this promise: No matter what, I must love this body I am in.  It has served me well.  Even though every joint screams at me, some days, like a Marine Drill Sergeant trying to break me, I can feel them.  And I can still scream back, get up and fight back.  I love this body that has enabled me to fight these past couple of years.  A fight I know others would have fallen before the battle began.  I love this model that was chosen for me.  I don't give up(forever!) or in and either has it...despite it all.  We were meant for each other.  Even though I have been most disrespectful and abusive;  mentally, verbally and physically.  I promise to love and respect this onesizesmaller body.  My body.  My Reality Car.

Thursday, September 8, 2011

Disappointment 101

Yesterday in the midst of trying to accomplish what I could for the day while caring for one unhappy child and awaiting the arrival of the next, sure to be unhappy, child (one is in adjustment, the other is a baby), a friend had called and I found myself trying to defuse a situation having to do with her family. So much was happening all at once. I could hear in my head, "Rachel, what are you doing?".  It was something that a friend had asked me over the long weekend and I hadn't been able to get it out of my head.  It was something I really needed to ask myself.

Later that night, at 7:45 after the last person walked out of our home, I left to go and pick up prescriptions.  My husband volunteered to go and get them, but I had to get out.  I got part way down the road and pulled over...I wanted to cry.  Within a few moments other cars were approaching and slowing, most likely to make sure everything was alright (that's the kind of hood we reside in!).  I pulled it together,  put my signal on and pulled back onto the road. I felt numb.

What am I doing?  I feel that I am being pushed to the limit. I don't get it because, a year ago, my limit was almost non existent, but I did it.  All of it.  Physically, I was spent.  Now I feel emotionally spent and I just don't understand.  I'm coming back physically...why aren't the emotions following?

Could it be that the expectations on me from some has NEVER changed?  Could it be that I feel if I was able to get through it with much less then I certainly have no excuse for saying I can't now?  I think so.  I think I just had an Epiphany.  I am feeling disappointed.  I am recognizing that what I expect from myself, others do not from themselves.  I am not saying that I am at all better than another, I would never.  I am feeling angry that I may have to lower my own personal standards to protect the same time I will be harshly criticized.

The past coupe of months, if I was going to push myself to do things, it was going to to be for my own personal enjoyment which also includes family time and friends.  I have had a great summer.  I have enjoyed concerts and camping.  Looked forward to it, got excited as they neared and took it all in as if I could never again.  There were moments, when nobody could see, I could feel my heart bursting and I would shed a few tears of complete joy.  I was finally being honest with myself about how terribly hard things had been.  I was looking back over that mountain I had just conquered.  Before me were friends dancing, laughing and singing.  At one point I was huddled in with two of my dearest and best friends (who happen to be married) and I felt a calmness and feeling of being right where I belonged washed over me.  We were swaying to the music together and they were saying the sweetest things.  I knew they missed the old me.  And I was back, slightly reinvented, but very much present.  I felt peace.  And such love.

Am I supposed to feel guilty for those precious moments?  I know the answer is no.  But I am feeling like the more I start to come back, the more is expected.  I had planned on coming back at my own pace.  My own pace.  While I don't want to be treated like I am "sick", I would like some consideration.  I have written new rules for myself and I'm not sure they fit for others.  I know that shouldn't matter, but just because my body has changed, doesn't mean that my heart or my head have.  I am still the same in those areas...I fear even more sympathetic than ever.  I constantly try to shield others from what I am sure would be uncomfortable or hurtful to them (I hear ya Trace/Marie, not my job...but you know better!).

So when that friend was on the phone going off on their own personal rant about others, I took into consideration all that was going on in her life and then tried to redirect the ranting and make corrections where needed.  I wasn't happy when I hung up the phone and reflected on everything throughout the day.  I don't mind being a sounding board, I know I am good at it.  But this one left me in a corner with (almost) nowhere to turn because I won't repeat what I am sure was intended to be someone else could do it for her.  I am NOT that person.  And when other events of the day, separate from this, came down, I felt cornered and isolated.  Knowing what I need to do and quivering inside at the thought of carrying it out.  It made me wonder, where the #**#! is that same consideration for me, from some?  Completely disappointed.

Who would have thought that disappointment could hurt so much?

I need to concentrate on the 96% that know who I am and respect, not exploit me for it.  Little digs here and there may catch me off guard as well as back handed compliments full of jealousy (like, "I [personally] haven't been sick for two years, but I have to think I would have killed myself trying to [get everything done]" Yeah, that was said to me, just last week.), but I'll get back up again and remember where I stand.  I assure you, it will be further from where I was when those digs were delivered. 

Every day, there is something new to learn, if we choose to.  And then, if we choose to, we can do something with that gift of knowledge.  Let me just say...I am friggin' smart!  I have several diplomas which hang in my head and on my heart.  That's nothing to be disappointed about.  I am Good People :0)

Thursday, September 1, 2011

Great Expectaions

What I learned today:

Some hold you to standards that they themselves could never reach and gain pleasure as they remind you of your shortcomings along the way.

Strength will remind you why this happens. And then point out how far above those standards you have actually risen.

Some expectations are unhealthy challenges set up for purpose failure.

Strength will warn you of the danger of accepting such challenges.  And then remind you that there is no need to compete.

Nobody expects more from me than I do of myself.  My standards are the ones to be leery of; not those of others. 

I wake every morning and put my feet to the matter what; how bad or how painful. There is no other choice.  It is what is expected of me, what I expect of myself.

I have always tried to do the best I could.  If I lay my head on my pillow at night and felt I didn't do enough, I tried harder the next day. I am a fighter.

I have never been a fan of jealousy.  Today, it made me smile.  Today, I was reminded that I had exceeded the greatest of expectations.  In spite of it all...

Thursday, August 25, 2011

Make a Wish...

If someone were to ask me right now what I want for my birthday, the answer would be simple.  Making it happen would not.  What I want, is to find an envelope in the mailbox addressed to me in my Gram's handwriting.  She never forgot, ever.  Until the past few years.

It's not for the cash that would fall from the card when I opened it.  It's for the joy I felt when I saw her writing.  When she addressed me as "Ra Ra" in the card.  And for the lingering scent only Gram's house had, still infused in the card. As though she had written it using a scented pen called Gram's House. Sometimes she would draw vines with little flowers growing on them.  I still do that sometimes. I miss her so much.  She is still here and I miss her so damn much.

My children love and miss her too.  Alec was away at his Grandparents house for a couple days and came back with several drawings.  One, he made for Great Gram.  Little does he know, as tight as their bond is, he is slipping from her memory too.  She is that amazing.  He is five and she made such an impression on my little man in his earliest years and he talks about her often.  I want her back.

On my birthday, I will go to her.  Not that my birthday is all that special, but because she made me feel that way; every time she spoke to me and held me.  It's my chance to return the favor.  I can't think of a better way to spend the day than to let her know how special she is to me.  Even if she recalls the time for only a brief moment.  Because I understand that someday, it will be more than a card I am wishing for...

Wednesday, August 24, 2011

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! 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 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!

Sunday, August 21, 2011

I Can't

So, I thought I had this whole thing figured out.  In fact, if you read back, it seems that over and over again I seem to think I have it all figured out.  Reflect, start anew, get back's all there.  Yet, this past weekend, there were some new revelations.  I've got nothing figured out!

I have been feeling better, a bit more pep in my step and I seem to be able to tolerate outings better and actually look forward to invitations to gatherings.  What has most improved is my attitude towards myself.  A few months back I had decided to make sure there were clothes in my closet that were comfortable and actually fit me.  I went out and bought clothes even though they were in sizes I wasn't comfortable with admitting I could fit into.  This has made getting ready to go out so much easier.  I can't tell you when the last time I stood in tears and panic before the mirror moments before we were to be leaving was.  Also making the transition easier was taking some of the blame off of myself.  Steroids do a number on your body.  Those close to me know how hard I am on myself.  Releasing some of the blame was key.  And lets not forget embracing the fact that so many accept me for who I am. I was/am the only one with a problem about how I looked.

As much as I want to believe that I am in control of this whole fibromyalsia and RA thing, I am not.  Next month will be one year that the fibro diagnosis was given and December will be the one year mark for the RA diagnosis.  I have come a long way, but am still struggling to find the norm. It's frustrating. Not only for me, but for my dear husband as well.  I keep thinking I can get back to where I was before and he keeps trying to remind me that I may not be able to.  I don't want to hear it.  So I push and then crash.  And then I get angry.  I want my old life back. I have never asked, why me? Most certainly, why now?

The words, "I can't" have never been comfortable crossing my lips.  I hear them bouncing off the walls in my head, but I struggle to get them out.  "I can't" is weakness.  I am not weak.  It sounds like I am giving up.  I have to change this way of thinking.  "I can't" does not have to mean I am giving up or unwilling.  That is what I really am struggling with. There is so much guilt about how much has been placed on my husband since this all started a couple of years ago, that I feel like, I can't, is inappropriate to say.

But, it is exactly what he wants to hear me say more often.  Several times in the past months I have asked myself, what are we doing here in this house, with this massive property surrounding it?  It is terribly painful to see the flower beds and gardens that are not up to par because we/I can't get to them.  Sure, we have finally nailed down, as a family how to keep the inside proper, but the outside, I am so embarrassed.  And then we argue because I can't let it go.  I let it all get to me and my emotions get the best of me and then it all comes out.  I can't keep up and I don't know what to do about it. He got very upset with me when I said that I would rather have people (who know us) drive by and say, "wow, I don't know how they do it" versus them seeing beds overgrown and understanding that we just can't. Because of me.  Because of this stupid RA and it's partner.  Because it could mean that I am letting it win.

So now there is a new resolution.  We will wait. Until the fall and until the spring.  And we will hope that I will continue to feel and move better and we can keep on top next year.  We will communicate more.  I was the one who usually took care of the beds in terms of clearing out and keeping up on the weeds.  Now, if I don't get to it, I'll tell him and he will get on it.  We will work together better than we have in the past.  I can't do it all and I don't have to worry about it.

I have also realized that I am not going to wake up one day and RA will be absent.  I can't have my old life back.  At least not exactly as it was.  We will continue to modify and take it one day at a time.  So that I can do so much more with so much less frustration.  I can't let this get the better of me.  And I won't. Ever.

Tuesday, August 9, 2011

RA Pain (Real Agonizing Pain)

I am fairly new on the RA front.  And whereas a lot of the time, I feel I don't have enough to speak on or about, I think when it comes to managing pain, I've got enough to go on.

Pain was the first indication that something was wrong(before diagnosis).  Ache was more like it.  A dull achy feeling all over that wouldn't rest or let me rest.  It was terribly obvious at night when I would try to sleep.  I was in a lot of pain.  After being told it could be Restless Leg Syndrome, among other things I disagreed with, my primary care doctor finally relented and prescribed Prednisone.  Relief was almost immediate.  I could sleep.  I could get out of bed and put my feet to the floor.  There was no more cane.  I was referred to a Rheumatologist. 

In my medicine cabinet was already an arsenal of pain relief.  Prior to all of this, I RARELY took any that were prescribed for me.  Not for knee surgery, gall bladder removal, tooth extraction, etc.  MAYBE, the first day, but after...nope.  RA, however, this was constant, relentless PAIN.  I have a family with small children.  We are active and I want to be present and involved.

My primary doctors has already given me 800mg of Motrin, but because if issues with my kidneys, I couldn't take that any more.  He then prescribed Vicodin.  I was terrified to take it because I heard that this is the stuff that moms get addicted to all the time.  How?  I am not sure.  Because, it knocks me out!  I started taking it maybe once a week at bedtime and promised myself I wouldn't take it any more that 2-3 times per week.  My husband told me that ten minutes after taking it, I would let out this sigh and that he could actually see my whole body drop in relaxation. I was really sleeping.  That little pill took the edge off enough so I could sleep.  That hadn't happened in over a year.  It was obvious that my body needed the rest.  So I began taking the pill every night.

When it was time for a refill (6 months after the original fill date!), I was so nervous to ask.  I was afraid the doctor was going to think I was an addict.  This time, I asked my rheumy to fill it.  He did.  And I have been taking it for the past few months, at bedtime.  At my last visit, he mentioned to me that I should try to skip some nights.  I wanted to take his head off and defend myself. 

I don't like taking all this crap.  We are all on some sort of cocktail to keep this disease at bay.  I went from taking a birth control pill (one pill!) at night, to...I am not even going to mention what I take in a day.  Trust me doc, I wouldn't take it if I didn't need it!  AND!  For the record, doc, I have taken it upon myself in the past to adjust my steroids, when needed.  I did that because you failed to recognize my desire to be with my family and FUNCTIONING  on a camping trip(s).  If I had a penny for every time in these past couple of years I have said to the doctors, "Do you have children??  Do you have any idea what this is like?"  Two did not (one until recently) and one did, but the memory of how taxing being a mommy/parent can be seemed to be lost.

I was stunned to hear that there are docs who do not discuss or offer pain relief.  STUNNED!  Really?  Everything that I read and hear talks of the pain of RA.  I am fortunate that I was given something(even though at first it wasn't for RA).  Lord knows, back then, I would have never asked.  Pain is present almost always. Even at that, I sometimes realize how much I block out, or try to.  It is evident in my short temper and difficulty speaking...and extreme fatigue (which is another topic that should be explored!).  I have yet to figure out what to do about daily pain.  

I have to admit, I am less than thrilled with my rheumatologist.  I often walk out feeling like I haven't been heard.  I know that sometimes, it is a wait and see.  Why should I have to remind him how long I have been waiting and seeing?  Why do I have to remind him that I have lost 2 precious years with my children?  Sure, I am here, but not down in the dirt, hiking through our woods with them.  They notice.  They know that mommy hurts.  Why should I be afraid to ask for more?  More relief?  For a documented painful disease?  Why should anybody?

No.  My pain is NOT under control. I am thankful for the ability to sleep.  But what I would really like is the ability to move through the day.  To kneel down and tend to my gardens and kiss a boo-boo.  To navigate the stairs to get the laundry done.  To clasp my own bra. Yes, Dr. ______, the inflammation is down.  Yes, my joints don't feel as squishy.  But I hurt.  What are we going to do about that?  What?  You want to try weaning me off the steroids, again?  Fine.  But what are we going to do about the pain?  And suddenly, I am at the receptionist desk making my next appointment, walking to the car and understanding that I am exactly where I was when I drove in this morning.  I realize this as I grip the steering wheel and my less swollen, no squishy joints scream at me.  I am in pain.  And there never seems to be a plan for pain. 


RA pain is real.  And so are the lives that we are living or not living.  Primary care doctors are generally not equipped to deal with the effects of RA, or don't want to.  It is confusing to be between two doctors, hoping that one will recognize and hear, really hear, what is happening.  What I would give to hear, just once, "lets get you comfortable".  And to know that there is real effort and concern behind it.  Not just when I am in your face.  While I would never wish this on anyone, I wouldn't mind if the docs spent just one our shoes.

Friday, August 5, 2011

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!

Thursday, August 4, 2011

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!

Thursday, July 28, 2011


Things are just, not easy, lately.  I have suddenly come to the realization that I have been hiding.  A lot.  Last week I was exposed beyond my comfort zone.  Today, I am tired and frustrated.  I just want to feel like the lady in the commercial or the person walking up our road.  To open a jar or bottle without turning my back so the difficulty I am having can't be seen.  Truth is, I am having trouble swallowing that pep talk.

Last week we spent several days camping with some wonderful friends.  There are only so many times in a day I can do the "act normal" thing by popping in and out of chairs like it's nothing at all.  I was slow, careful and clearly uncomfortable.  Not just physically uncomfortable either.  This was pure exposure.  I was already pushing a bit and when I pushed harder, frustration and pain set in worse. I couldn't hide.  I wanted to be everywhere, do everything and I didn't want anyone to see how badly it bothered me that I couldn't keep up.  My little guy started swimming for the first time without a vest.  "He just took off like he had always done it." My heart sank.  I wasn't there.

'Suck it up.  They are having fun.  This isn't about you. It's about them.  So, just smile, suck it up and act like it doesn't bother you at all.' I do this ALL the time.  I do not want my children to look back and remember their childhood by the way I feel every day.  I don't want to ruin it for them.  I don't want to ruin anything for anyone.  Ever.

At one point during the trip, my feet and ankles began to swell terribly.  I was silently relieved.  A physically visual sign that I was "unable".  For once, I didn't have to say or explain for something that nobody can really ever see.  I didn't have to push now and pay later. It was hard to miss my feet.  Just leave me alone and stop asking.  Stop making me say, "no thank you (ie, I can't)"  Stop making me realize my failures.  My limitations.  Stop making me feel like I am not doing enough, lazy.  Stop making me wonder what it is you are really thinking.  Please. Stop.  Stop making me feel you are disappointed in me.  Stop making me realize how disappointed I am in myself.  Please stop, because you are making it hard for me to keep this smile on my face and act like it is all good.  Please, go have fun.  I appreciate your wanting so badly for me to be there, but don't make me say it again.  No thank you (I can't).   It was so hard.

In the safe walls of my home, I had been putting on the greatest act ever (ha!  I was raised for this!).  Those few moments we spent at the door chatting.  Yep.  I looked great.  Close the door.  Standing there outside in the heat. No problem.  Go inside.  Close the door.  I sound quite chipper on the phone, on facebook.  It's not fake.  That's me trying to find all the fun and positive (and truly enjoying it as much as possible).  Who wants to here and see the other side? God knows, if I am trying to hide from it, why would anyone want to hear it?  Or see it? I just don't want to be seen as the person I can be when I am not "on".  I do this all day long.  To the point where I start lying to myself and denying the much needed rest.  I can't keep up.

I do my daily job pretty well.  And seriously, I am far better than I was just this past fall.  In fact, I don't believe I have slipped back that far since new meds have been tried.  I am so thankful for that.  I really am. It's the new things that come up.  The yo-yo factor.  I am tired.  And what I find is that I am most tired of pretending it's not as bad as it sometimes can be.  And I don't want to be bitter.  I just want to be better.  I put so much energy into the day that by the time night comes...I am simply exhausted and there is no hiding from what is really going on.  In the morning, it starts all over again. By 10am I start to move more freely and make the most of that movement until later.

What I learned from all this, believe it or not, is that I actually am not all that well.  For real.  I believe it.  Because when it came down to it, last week, I wasn't able to keep up.  I had limitations.  It's time to be more aggressive and honest with my next doctors appointment.  It's time to start fighting harder for what I want and not be afraid of what they are thinking.  I am NOT weak.  This is very real.  And though the course of treatment has proven helpful.  It's not good enough.  I demand more.  I don't want to feel naked any more.