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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.