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Wednesday, January 15, 2014

One Day

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

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

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

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

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

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

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

Thursday, January 9, 2014

The Mama Games

I am sure I am about to receive the "Worst Mama of the Year Award" any time now.

For Christmas, our son had these items, and only these items, on his wish list:  Playstation or Xbox, airsoft gun.  That's it.  I think he knows that Santa always tries to get at least one item from the wish list.  Well played Bubba, well played.  So, after much deliberation, we decided to get a (used) Playstation.  We are the best parents.  Ever.  We even got them 3 games. A Sonic game, Star Wars and Batman Arkam City.  The last one was rated "Teen".  The sales-kid was really nice and must have sensed my reluctance.  His words, "This is a great game.  There's no blood and it's not violent."  I know how much Bubba loves Batman (he is 11) and I decided that maybe I was being too strict.  After all, the nice boy at Gamestop told me it was a good game.  Gamer.

Fast forward to Christmas morning.  The kids were so excited and of course wanted to play.  Bubba picked Batman.  Thirty seconds in..."I'm gonna make you my bitch."  His head whipped around to see my reaction.  He knew.  I tried to remain cool and calm (with our 7 year-old nearby) and let it play out.  I made it 30 seconds more. Enough.  Bubba took it like a champ.  "It's fine.  It's fine. I can play something else."  I think he was uncomfortable too. We since have turned off the dialog and I am still uncomfortable with the violence.

Look, I know that my children are absolutely going to hear and witness some of life's less-finer moments.  But it doesn't mean it has to happen under our roof.  And don't get me wrong, some of those less finer moments, occasionally come out of my mouth.  It happens.  But...I am sorry for it and the kids know it's wrong and they hold me accountable.  Lol!  What worries me is it being witnessed over and over again.  It is no different than moving to another part of the country and adapting the local accent.  It is just what happens.  And until they are old enough to understand that certain things are not to be said or done or whatever either ever or in certain company, they aren't allowed to be exposed to it over and over again.  Period.

I don't blame the kid at Gamestop.  I know that, in general, I am less tolerant than whoever rates those games.  And it was rated "T", to be fair.  And I am sure there is someone reading this thinking, "What does she think should happen? That they should shoot flowers at each other?!"  The answer is...yes.  No.  I don't think that.  I know that reality sells (have you seen what is on TV lately?) and is fun, to some. Including my son.

I am not ashamed to say that I do my best to keep my  For as long as I can.  Because it is the shortest stage in life, and the most impressionable.  Yes, they are allowed to watch some "edgy" stuff. But we, the parents, determine what that is.  On the other hand, we are a classic tv family.  And the kids absolutely love it.  Imagine that, they love it.  Simple, clean, classic, slapstick television that entertains them and makes them laugh and think.  More "mature" movies or tv is earned and they know that.  Rarely do I get any protest.  PG-13 kills me.  Everything is PG-13.  But, we look into it and decide.  WE decide.  Because WE are the parents.

Our kids are not entirely sheltered either.  There are things that we allow that would surprise some.  I don't coddle my children, at least, I try not to. We try very hard to teach them that being responsible earns them greater responsibilities that they desire as well.  There is no advancing to the next level until the previous level is completed.  Whatever happened to that?  Instant gratification will not be taught here.

So, Bubba.  I am sorry. But the game has to go back.  And you can choose another.  For now, your mama needs to let you be a boy.  This isn't to say that you will never be able to play these games.  I know you will, because you already showed great understanding for my discomfort with it.  Which tells me that you are growing and becoming the boy you should be.  Someday, if you read this, I want you to know how much I appreciate the respect you have shown me with this.  Even though I know how badly you want to play.  You are an awesome kid and we love you!

Now I am off to check out Skyfall.  Here's hoping I can approve this movie.  It's what Bubba really wants to watch.  He is into spy stuff lately. This mama of a growing boy stuff is tough!

So, do you think he will turn Batman in for Bob the Builder?  No?  Ok....

Wednesday, January 8, 2014

Climbing Mountains

2013 was...interesting, to say the least. There were many changes and choices to be made.  None of them were fun.  However, in the end, I am OK with most of it.  I wasn't prepared, but if I waited until I was, I am not sure I would have done what I needed.  So now, I start 2014 as a very different, but fresher me.

I also start 2014 as a smaller me!  That's right, remember the 266.4?  And then the balloon to 278?  I am now hovering below 240...hoping to close in on 235 soon.  I am a size I haven't been in YEARS!  There are some issues with dropping weight at this age (Holy Crap!  I turned 40 this year.  FORTY!).  It seems the skin has some memory loss.  You know, like remembering where it belongs!  I am pretty sure I would be a size smaller if my skin would just snap back!  I complain about this often, but my dear, adoring husband thinks I am crazy.  He thinks I look great. And I have to admit, I feel pretty damn good too.  Don't get me wrong, there are some rough days, but nothing like I have been suffering through for the past four years!  Yes, I said suffering!  Because that is exactly what it has been like.  I was a fool to pretend I wasn't.  To my RA Warrior friends out there, I know that this is a short lived thing.  In fact, it is already creeping back.  I knew it would.  But in the meantime, I intend to make the most of the freedom and movement I have at this moment.  Because I can!

So, with 2014 staring me in the face, I know exactly how I am going to spend it.

With a tummy tuck!  OK...not really!  I wish I could though. At this point, I am just happy to see my feet again.  It was cute that I couldn't when I was pregnant, but notsomuch, when I am not!

I am going to spend as much time with my children as I can.  I am a very lucky mama because I really do have some incredible children.  They are adventurous, kind, loving and so much fun.  Yes, yes, yes, they do fight with each other, but not always.  And they don't always do as I ask, but then, they do.  They are kids, after all.  In five years, Emily will be off to college.  College.  I have been here for the past four years, but not in the way I wanted to be.  Right now I am pretty close to "normal" as I have been in a long time.  A couple weeks ago, I went sledding. Granted, I only went down once, but I did it.  I got down on the sled (a feat in itself!), giggled all the way down the hill...and then...I walked back up the hill mountain (let's be real, it may as well been a mountain to this chick!).  It was worth seeing the looks on my babies faces...and feeling the smile on mine!  How friggin' far I have come!

That's right...I climb stairs and hills now.  I am a climber.  BAM!

I will nurture relationships that are important, healthy and deserving.  I started this last year and it has been so rewarding.  Sometimes, you just have to get over your own sh*t; swallow your pride, and make it happen.  When it does, it feels wonderful.  And life is happier...and easier.

Now, please sit down for this next one.  I will do less.  Meaning, I am worth more than what someone thinks I can do.  In my head, I am worthless if I can't "do".  I have felt like I don't have a place for some time now because my ability to do has been, well, broken. I am sure that, in following through with this, I will find my place, again.  Love me for who I am, not what I can do.  And by the way, that statement is more for me than anyone else.  This will be a tough one for me;  a near identity crisis.

I am also going to be more honest, to myself and others when asked how I am. I am far from weak.  Admitting where I am at won't make me weak either. I have been very conflicted about how to handle things.  Not any more.  On a daily/hourly/minute-ly basis, I am in a fair amount of pain, even now, when I have declared that I am better than I have been in four years.  The pain is just at a mind-over-matter manageable level, for now. I still hurt.

I am also going to let go...of a lot of things.  I am terribly hard on myself.  Nobody is perfect.  We all make mistakes and/or wish we had... or hadn't said or done something, at some point.  I am not one to carry anger, like some do, but I am very guilty of carrying, guilt.  To the point of ridiculousness.  I don't know why I do this.  I am an honest person, so there really is no need to carry this load.  Besides, my Gram once told me, "If God forgives, who the heck am I not to?".  I believe she is right.  Letting go...

2013 wasn't a great year.  For me.  It was heavy and hard and entirely dysfunctional.  But I learned so much.  The way I learned it may not have been most desirable, but I believe it was the only way I was going to learn, hear and see it for myself.  In so many ways, I know where I stand and who I am.  I am who I always have been.  I may be physically broken, but the rest of me is the same.  Somewhere along the line, I lost my funny...temporarily.  Life sucks without funny.

2013 wasn't a loss either.  Because I wouldn't let it be.  Every day is a gift and it would be wrong to wish an entire year away.  Everything happens for a reason.  Everything.

Here's to a year of climbing mountains, stairs, cherishing friends and family, relaxing, forgiving and forgetting...and remembering what is important!

And hey...maybe my flabby skin will bounce back!  One can only hope!

Welcome 2014!!!!  

Monday, October 7, 2013

I Think I Broke My Kid

I think I am starting to see the consequences of my ways.  How I handle things.  And ultimately, how I am showing my kids to handle things.

I just got back from a conference with my son's teachers.  He is in fifth grade and classified as learning disabled.  It is three weeks in and I am already in for a meeting with his team.  Apparently, he is "checked out".  Already.  Overall, we haven't had to come in this early for a meeting since we made the choice, about three years ago, to allow him to be classified.  I thought everything was going relatively well, with some minor glitches.  If asked how things were going, even specifically, he would reply, "Great!".  Things are not great.  I got the call last week.

What I heard the teachers saying was that, my typically anxious kid, was showing no signs of anxiety.  At all.  And we were seeing the same at home.  Everything is just ducky.  At least that is what Ethan wants us all to think.  The reality is, he is overwhelmed and won't ask for help.

I think as parents, we try to shield our children from some of life's unpleasantries in an effort to preserve and prolong their blissful childhood.  I do this.  All. The. Time.

During the conference, we got to a point where I was forced to give a more detailed explanation of what has been happening in the house and some changes that are about to happen.  "That is a lot to have going on.  That has to be stressful."  I reply, "I'm fine."  I hear myself and I realize that is just what Ethan has been saying.  And he doesn't think he needs help either...and God forbid he asks.  What have I done?

I have set him up for failure.  I often refuse to ask for help, because in my eyes, it means I have failed.  I am sure the kids are aware of this.  My husband gets upset when he finds I have done or attempted to do something maybe I shouldn't have without help.  I snap back that I don't need help.  I know it's because I am secretly angry about the changes going on inside of me and want to prove that I am stronger than my moronic immune system, RA and fibromyalgia.  I may have used up all the hot water in the shower that day because it is the only place I allow myself to cry and acknowledge how much I hurt, how exhausted I am and how scared I am about the future and what life will be like and what people must think of me.  But ask me how I am..."Fine/Good/Great."  Unless I am comfortable enough, I won't let my guard down. I don't say I am overwhelmed.  I never wanted to be that person that someone regretted asking, "How have you been?"

My kids aren't stupid. They know I am lying through my teeth to other people.  They know I say I am fine and refuse help altogether.

The teachers were kind in offering that perhaps I give the kids a bit more information so that the kids don't form their own conclusions.  What I kids don't trust me to be honest with them I have failed them.  I have been so concerned with what others may think of me if I am honest or ask for help.  It is such a painful thing for me to admit and now my kids are doing the same.

I need to find a balance where I don't loose too much pride or comfort.  I need to show my children that it is OK to ask for help and that it isn't always the best thing to say you are doing great, especially when you are not.  But I don't want to encourage whining or needless excuses either.  I want them to be strong, independent and productive individuals.  I have to wonder if it is too late.  If I have already unknowingly instilled bad habits in them?  How do I fix this?

What is encouraging is that it is early in the school year and we are catching this.  Maybe this new "showing" of anxiety is partially due to maturity.  Maybe it is not all my fault.  Maybe my beautiful boy is teaching me a lesson~

Maybe, my boy just broke me...

Tuesday, October 1, 2013

Falling Back & Pushing Forward

RA is no joke.  I am about a week away from being reminded of just how funny it never has been.  It's not the pain that breaks's the quality of my hours, days, sleep, play and brain that does.  I have been without an infusion since June 4th.  I just got the go ahead to start them again.  Except I cannot because I am having surgery soon.  I decided to eek it out until after.  I have to wait until mid November to have the next infusion.  On top of that, for the next 3 weeks, they are taking me off the methotrexate.  This rattles me a bit.  I missed my weekly dose, once.  That is all it took.  One time and I never missed it again.  It is that bad.  I would be lying if I said I wasn't terrified of what most likely is about to happen.  A lot of people don't know or understand how bad RA can feel or be.  A lot do.  I really am not ready to fall that far backwards.

There have been no posts here because my hands and fingers ache.  Otherwise, I have been doing well.  Our summer went by too quickly, but was packed with a lot of happenings.  August was a blur of stressful events.  I am thankful for family and friends that were there for us.  Checking in, popping by and calling.  All at what seemed to be perfect moments where I gladly welcomed the distraction from all that was happening.

September came and it was time for school.  The time of year I dread the most because I have to give up my babies for a good part of too many days per week.  We decided to take some family time and extend our annual camping trip with my sisters and their families (aka Sister~Fest!).  We went a few days ahead and enjoyed some kayaking, beach days and a trip to Gettysburg.  It was wonderful.  My sisters and their crews showed up for their usual days and we all enjoyed the best Sister~Fest yet!

October is going to be a blur as well.  The next couple weeks are filled with doctor appointments, tests and ultimately, the surgery.  I don't care if someone minimizes the procedure, but what I can't tolerate is how all this makes me feel being minimized.  I just want to get to the other side of October 15th.  To know that I made it. Alive (oh yeah... I have had many surgeries in the past.  This is the first time I have thought, "what if I don't make it?").  I have reason, above the typical risks, to worry about this. To know that it's done.  No more fantasy of my body suddenly being healthy enough for "one more".  Remove the option so I can move on. Not only am I looking forward to healing from the actual surgery, but I am looking to heal altogether.  Get this done so I can resume treatment for RA, etc.  Get this done so I can start to process the end of something I wasn't ready to be ended (last week I went through a flurry of purging the attic and house of baby items.  All except the crib and changing table.  I couldn't bring myself to let go.).  I want to move on.  Forward. And for the love of God!  I would like to have a shot at a healthy Thanksgiving and Christmas...for the first time in FOUR years!!

This is where I am at.  This is where I have been.  I have not been ignoring or avoiding anybody.  I have just been busy trying to keep up with life. I appreciate the concern and you stopping by here and it means a lot that so many take the time to check in.  It truly does.

I am hoping to pick up this blog where it originated (a weight loss journey) when I am recovered.  Somehow, despite all the steroids, I have dipped well below the weight that started this journey.  I haven't researched it yet, but I wonder how much a uterus weighs?  Can I count it as an official loss?  I am hoping that it weighs somewhere in the neighborhood of 100 pounds.  What do ya think?

Wednesday, June 26, 2013


I am pretty sure I have expressed here my reluctance to ask too much of my children.  I worry that I won't find the proper balance of work and reward.  My parents are and were  hard workers and I know that I have inherited this trait. I often hear how relentless I am when it comes to accomplishing tasks.  I want them done and near perfect as possible and there is always "just one more thing" waiting in the wings.  My parents (mostly my father's) famous words.  They would be said around noon on a Saturday, after we have been exhausting ourselves since the early hours of the morning. "Just one more thing."  And before we knew it, darkness was upon us.  I feel know I missed out on a lot.  My friends would be off at the movies or a dance and I was taring fence posts or painting, raking, pruning, hauling...anything and everything.  I was resentful.

There is a plus side to all this.  I am pretty handy and there isn't much that I can't do or won't try.  Surprisingly, I am still hungry to learn how to do something...and willing to do it myself.  My body...notsomuch.  God did, however, bless me with some fantastic children.  Children who are just as hungry as I am to learn.  If not more.  And I am finding that I am really enjoying the looks on their faces when they tackle a new task.  To be fair and honest, just as much as I was overjoyed to see the smile of approval on my dad's face as he watched me from the dining room window as I dance in the driveway to the music blaring from my car...out of the stereo I had just successfully installed...all on my own (I was 19-ish), I know that he was smiling because I was.  I totally get that.

More and more, I have to rely on my children for things I am not sure I would have prior to my body failing me.  I am talking beyond normal daily chores and tasks (those...apparently are mundane because their rooms are never clean).  They all want to help.  Ethan can guide me while I back up the car to attach a trailer.  Today, he also showed me that he knows how to properly connect the trailer, attach the chains, lock it up and plug in the lights.  He pushes me aside and tells me not to lift or bend, "It's OK mama, I got it."  In such a kind and respectful voice too.  As if he knows how hard it is for me to let go, accept that I can't do it all anymore and even worse, watch how independent my babies have become.  Emily seems to be several steps ahead of me with certain things.  She has mastered the pool and filter operations.  She knows how to get the auto vac working.  And she does it to the best of her ability.  She does it right and is careful not to break things.  She also asks lots of questions and I have to be careful to make sure I am showing her the things her brothers are learning as well.  She should learn, just as I have.  Alec is also very inquisitive and eager to help.  Today, he learned how to check the oil in the lawn tractor.  I am just so impressed with all of them.

My job, is to make sure that my children are children.  To respect them.  Not because I ask too much of them, but because they want to do so much...for me/us.  I don't have to worry about pushing them to hard and not rewarding them enough.  I have to make sure they allow themselves the rewards.  Life is so much about balance.  I have never mastered this.  Through my children, I have learned so much.  Together, we will find balance.

My biggest fear used to be that I would not be a good mother.  I am not a good mother, I am a great mama.  I am smiling at myself.  I did it.  Albeit, not alone.  This time, I am dancing with my babies. I don't need anybody smiling down at me.  I know what I had to overcome to get here. Nothing tops this accomplishment.  I am so blessed.

Wednesday, June 12, 2013

Humpty Dumpty

Humpty Dumpty sat on a ball
Hoping to keep in all her parts that would fall
Now the good doctors with a sling, nip and stitch
Hope to repair
This feisty, impatient, bitch!

I have a date!  Again.  Finally (hopefully), I have a rendezvous with TWO men in masks.  We will meet up in a sterile environment and they will form an assembly line and put this Humpty Dumpty Chick back together again!!  Though we have been to this point before, I am confident that this is it!  Maybe.

However.  After the last week and a half, there may be another masked man invited to the party.  Oh good gravy.  Who goes to the doc and is told that there may be a problem with their anatomy?  I mean, really.  Other than the fact I have parts that want to jump ship.  Maybe it's a hostile environment in there.  I just don't get it.

Look, I don't mind having to go to the doctors.  Really, I don't.  I mean, lately, I live there.  Last week, I was at a different office every day.  This week, I will be visiting three.  What is difficult is finding out that there is some other issue going on.  It gets exhausting.  Granted, this past issue is one that I have been dealing with over the past twenty-plus years.  It has gotten much worse lately (and when I am comfortable, I may and probably should, talk about it here.  Give me some time, it has taken almost a quarter of a century to fully admit to the doc) and is taking a toll on me physically, emotionally and socially.  I am not complaining about being at the doctors, the constant draws for blood, xray, ultra sounds, MRI, CAT, scopes, etc..  It is just part of managing and really getting a good grip on this whole situation.  I learn a lot and feel that with every test we are working together to ensure that I am getting the right treatments, drugs and advise.  For my best life. This is what I do, now.

Last week a friend asked me if I wanted to go and hear a talk on RA.  I was pleasantly surprised.  At how informed I am.  How much I have absorbed and learned from my experience over the past three years or more.  Working through and writing here and contributing pieces elsewhere and getting feedback has truly empowered me.  Period.  I am informed.  That can be a blessing and a curse.  I know what I am up against and I understand that too many do not have that same understanding.  They think they know, but they don't.  Ignorance can be painful.

Yesterday, a friend demanded full eye contact and an honest answer from me when they asked what is going on and how I am doing.  It made me uncomfortable, but I answered.  I answered about RA. Only RA.  She then asked about how I was managing the fibromyalgia, the prolapses (which could be the cause of some excruciating lower back pain I have been having) and the most recent revelation that something else may be brewing.  I laughed at the list and commented that it doesn't sound so bad when I am trying to tackle one at a time, but all together, it sounds overwhelming.  "And yet, you are still smiling and joking.", she said.  Yes, yes I am.  I felt the tears trying to break the surface.  I wouldn't let them.  I just smiled and cautiously changed the topic.

It is a lot.  I am in a new kind of pain more often than not.  I can almost make it until dinner time.  I sit at the dinner table in agony and try super hard to concentrate on the kids, dinner, etc.  Lately, I give in and take something. I can honestly say, I understand how additions begin.  Fortunately, I don't have one.  But I understand it.  When there is pain that you just can't get above, pain that you fight all day long.  I understand.  It is clear when I am on something for pain, though it doesn't remove it completely...I refuse to maintain a steady dose or accept anything stronger.  The pain is still there, just a bit duller.  But I can concentrate and hold a conversation.  I am chatty and overall happier.  I am not battling a thousand nerve endings that are registering "false" pain, neck stiffness, and lower back agony.  I am free for a few short hours.  Like I said, I can totally see where someone could loose control.  I won't.  I just have to make it until October 24.  And I will.

In the meantime, I am just happy that we can continue on with our summer more predictably.  I would prefer to get this all over with sooner than later, but for some reason, that just is not in the cards.  This may also be good if we have to involve another surgeon.  It was hard enough to get two docs lines up along with my crazy windows of opportunity.  Knock on wood, RA seems to be manageable, for now.  Everything happens for a reason.  

By the way, this surgery, falls on my Gram's birthday.  That is such a comfort to me :)

I have a lot of time to prepare for my date with my masked men in October.  By Thanksgiving, I plan to be in the kitchen, standing tall...with nothing to fall ;)