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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 ;)

Monday, June 3, 2013


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

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

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

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

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

It has taken me a long time to feel, know and believe that my husband and children love me, respect me and understand despite my not being able to do all the things I used and want so badly to do.  Because they have been so solid in all of this.  They never wavered...I did.  I had to learn that they had my matter what.  They believed in my diagnosis more than I did.  I wasn't listening because I was too concerned with making it look like I was capable and still needed.  

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

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

Wednesday, May 1, 2013


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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, April 17, 2013

Update From The Couch

I've been struggling with how to proceed here.  I don't know where to draw the line at TMI!  However, you are asking, so I will figure out how to do an update with class. Maybe.

The ball exercise is not happening.  Until I figure out what I can do I it that does NOT involve any muscles in the *ahem* lower region.  I just should not.  So we are clear, here is the current list of Should Nots:

No lifting
No standing/walking for too long
No coughing/sneezing/laughing WHILE standing
Should not take long showers
No Dancing/Bouncing Up & Down...absolutely never!

Here's a new one as of yesterday:

No yelling (we are talking slightly raised voice here, not even screaming!) while standing!

I also proved today that sneezing and calling loudly for somebody, even while seated,  proves...unsafe/complicated

That is where we are at.

I shall remain in this state of "Caution", it appears, until July.  My first window of opportunity would have been for the first week in May.  That is not working with the surgeons schedule.  A normal person (one without RA) would have been able to do it the second week in May.  My next window is the first week of July (I think) as long as I stay healthy.

I learned some things sitting here.  First, I am a kick ass Rummy player.  Second, while watching The Incredible Dr. Pol, I learned that, should "it" ever fall out, we could just call a large animal vet and they will come over and pour cold water over "it" and gently shove "it" back in.  I saw this done with a cow who had just prolapsed after giving birth.  Also, from a friend that is a vet, I learned that you can also pour sugar on "it" for magically sweet shrinking powers to help with getting "it" back where "it" belongs.  See, all good.

So really, I am fine.  Just waiting for July.

Thank you for all your messages of concern.  I am being taken very good care of :)

Wednesday, April 10, 2013

Ad for Dysfunction

I need an entourage.

That is just a fancy way of saying I need some people to boss around.  People that will do what I want and the way I want.  Maybe I should run an ad.

Talented, Busy Wife and Mommy of 3 Seeking Entourage

Must be clean, tidy and organized.  Must love to label EVERYTHING and know the difference between a good label (I made it) and a bad label (manufacturer's sticker and/or price tags that are meant to be removed after purchase...duh!).  Must have appreciation for my systems already in place and NOT TRY TO CHANGE OR REARRANGE (there are pictures for placement purposes and a video cam that may or may not be working at any given moment...even if it appears NOT to be plugged in.  Ignore the dangling IS a wireless device.  WHAT?!?  It IS!).  Must understand that there is a place for EVERYTHING and quickly learn where that is.  Must never utter the words, "Control Freak".  Must love lists. MUST have the ability and desire to finish what is started.  I haven't the time the see after someone else's, "I was gunnas".  Must be strong and able to move furniture pieces as fast as I change my mind without complaint.  Knowledge of simple tools is required.  ABSOLUTELY can never, ever listen to my DH, aka "Dooms Day James"!  He will try to sabotage and talk you out of everything saying it can't be done.  This requires great strength to not roll ones eyes.  There will be a test for this.  Must be willing and able to sew, paint, refinish and construct.  Must have a really great sense of will need it. Pay: A glass of wine as we stand, stare and admire each project upon it's completion.  Label maker required (a laminator is a plus!)

Who wouldn't want this position?

There is too much for me to do.  Hell, when I was "healthy", there was too much for me to do.  My basement is beginning to look like one of those on Hoarders.  Actually, I think it may qualify for a The Best of Hoarders, episode.  My body can no longer even begin to keep up with the ideas and desires in my crazy (albeit, very talented) head of mine.

OK, so a clean version of Hoarders.  I have issues.  I will leave it at that.  Those who know and love me, know that I could NEVER survive in an atmosphere like that.  So, you can understand how the amount of clutter is weighing on me.  These people I live with (that I truly love with all my heart) are driving me beyond batty! I was not groomed for this type of dysfunction!  My mother made the best of the Troyer Farms potato chip BOXES (oh yeah, remember those? ).  They used to line my toy box (after she covered them with them in the leftover psychedelic wall paper from my bedroom...oh yeah, it was that bad.  Partridge Family bus bad.  No joke.)  and provided neat divisions and places for each category of toy.  No cross-contamination was ever allowed or accepted.  Ever. And in the event such a horror should occur, the entire contents were dumped in the middle of the floor to be sorted and placed back in their rightful spots once again.  My PLAY kitchen, resembled that of the one from the movie, "Sleeping with the Enemy".  And of course, the actual kitchen in our home growing up.

***There is a violation in the above picture.  The bag of rice should be emptied into a plastic, food safe container and labeled.  Cooking instructions should be neatly cut out and adhered to said container.  Remembering to place the container on the appropriate shelf, label side out and according to size.  And by the way, I pulled this picture from the Internet.  I don't eat clams from a can.

My dad, well that is a whole other issue.  He is JUST like my mother.  How those two found each other, I will never know.  NOTHING in their house is out of place.  Nothing.  So it is easy for them to be ultra critical when they come to mine.  I live with pigs.  No one is on my team.  And I certainly wouldn't pick any of them to be on mine.  Did you read...they are PIGS!  They are a team of four working against my team of one.  Oh...they are good!  They are my secret weapon.  I am waiting for that day.  That very wrong, awful day when my parents pick the wrong moment to criticize the state of our home.  I am sending my crew of four over to do their best.  Things will never be the same.  I know where to hit.  Clothes will no longer be hung by color.  Socks will be unballed and left to frolic and run amuck...some may even be left *GASP* single!  A nail may find it's way in to the screw bin.  My mom has the same issue with stickers as I do (SURPRISE!) so I will hand one child a sticker gun.  Oh!  The mayhem!!  The absolute glorious MAYHEM!  As my secret weapons depart, I shall have them place one stray leaf on the driveway and maybe a blade of grass too.

I am a child of order.  I crave it.  Yet, somehow I have managed to find bliss in this chaos.  Don't get me wrong, I am placing that ad because sometimes, and seemingly uncontrollably, labeled dysfunction tries to trump chaotic bliss. :0)

The Prolapsed Pine Tree

This is not going to be an uplifting or funny post.  It is going to be an honest one.  I feel it needs to be out of respect for those of you who are following and dealing with RA/fibromyalsia and anything else.  I know that it can get sickening and disheartening to only read when things are going fairly well to great.  I know the importance of knowing that someone gets it.

I am wound very tightly lately.  I am stiff, tired, achy.  I can't stand for long or gravity hits and makes the issues in the female department really prominent and ultimately painful.  And I get frustrated.

Apparently there is a tree that the electric company would like to remove because it is in the way of their lines.  Normally, I wouldn't think too much about this.  The other day our neighbor came over to ask what we wanted to do about it.  Today, I stuck the notice on the front door that gave permission for the tree to be removed.  I was getting dinner ready and our neighbor, along with the tree guy knocked on the door.  I forgot to sign the notice.  I signed it and went back to making dinner.  All at once I felt overwhelmed.  I was thinking about all the stuff that needs to get done, how there will be a stump and mess to clean up.  How anal the neighbors are on either side of me and how neither have a clue what is happening here or how much I would love to be tending to every detail of my yard as they get to, their own.  I suddenly was pissed that the tree had to come down.

It wasn't the tree.  I quickly found that out when I burst in to tears while going over the days events with Jim when he came home.  We had a few moments alone and started to talk about the appointment I have with the ob tomorrow to discuss the details of the hysterectomy I am to have.  I don't want to have this done.  At all.  I am not scared about the surgery.  I am pissed.  I am so sick of being chipped away at little by little. Pieces of me are being lost.  Or in this case, falling out!

I am sick of feeling like I have to pretend that I am OK with everything.  Like none of this affects me in the least.  Seriously?  It freaking does.  There is so much that I am not in control of right now.  Too much to make light of and jokes about.  I really don't say much about how I feel, really feel to anybody because I can't imagine what it is they could say.  I honestly don't trust that it would be understood or result in the sympathy I need...not pity.

I am also sick and tired of pretending that I am not disappointed in some people.  Or not being able to express that I am.  Because I freaking am.  Please, do not be critical when I do not meet your expectations.  Especially when you rarely meet mine and I [used to]remain unconditionally loyal and tolerant for far too long.  I know where I am valued and respected.  I have had enough.

What I am afraid of is the time I am supposed to heal afterword.  I was fairly optimistic until my last appointment where I was reminded that I don't heal the same and I should expect that.  I promise to be compliant.  But I am afraid my body won't.  My body  has been acting like an out-of-control teenager.  I know what I expect of it, but clearly, it knows better and has other plans.

I am sick of being babied. I asked for a rake to be brought up from the shed so I could do a little work here and there, if I felt like it.  "You can't do that.", Jim told me.  I replied (almost begging)," I won't overdo it, I just would like to have [the rake] up here in case I feel up to it."  Nope.  And God forbid if I do something and maybe push a bit too hard, I can never admit it because I won't be able to put on earrings without help/permission. I know it is out of love, but it is driving me crazy.  I think it is because I so many times have to admit that I either can't do something or get frustrated because I know I have to ask for help.  So not only do I have to admit to myself that I cannot do something, I am often being told I can't do something by somebody else. Ugh.

So now I have to give up my uterus. Fabulous.  I am exhausted with all this crap.  I feel like I am standing in the middle of a windstorm trying to catch all the loose pages of a book I am reading.  I am failing miserably.  I don't have a handle on this RA thing and as much as I try to ignore it, fibromyalsia is kicking my ass too.

Look, I am all about looking at the glass as half full and all that other positive...stuff.  However, there are days, and today is definitely one of them, that I just can't find my inner cheerleader.  Don't lie, you know you lose your cheer bitch sometimes too.

If anybody is looking for me, I will be out hugging the tree...

Monday, April 8, 2013

Making the Best of It

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, April 3, 2013

Letting Go

Tuesday morning was a tough morning.  Our dog, Dora,  had been sick since Sunday and spent all of Monday drinking and throwing up.  I spent a good part of the day watching over her, speaking with several vets & techs, praying and worrying.  There was a plan put in place for the next 12 hours and we made an appointment for 8 am on Tuesday.  Twelve hours.  I sat on the step and Dora came to me.  I took her head in my hands and with my eyes inches from hers, looked into them and said, "Don't you do this to us.  Don't you leave us, please."  She wagged her tail and her whole back end began to sway with an ounce of that excitement she was always so full of.  There's my girl!  I kissed her on her head was hopeful. Twelve hours.  You can do this...

Jim set up a cot in the sun room so he could stay with her and I went to bed. I wanted to watch something on television to distract me.  Something that I would most likely never watch again so that I wouldn't associate that program with this awful night.  I was hoping to fall asleep knowing that if I didn't rest, I would be a mess the next day.  At 4:30 a.m., I was still awake.  Jim came in to use the bathroom and told me Dora was moving around and he was looking forward to 6 a.m., when we could give her something to see if she could hold it down.  I was relieved.  I woke up a bit after 6 a.m., threw on my robe and grabbed her meds.  I stood in the doorway of the sun room.  Jim was asleep on the cot and our faithful pup was laying by his side. I called to her.  She didn't move.  I called out to Jim and he quickly got down on his knees by her side. I remember saying, "No! No! No! No!"  I knew then.  She was gone. I watched as Jim lay his head down on her.  I went to both of them.  I wanted to fall apart and soak her coat in my tears.  I wanted to love her back to life.  But I knew I had to keep it together.  I knew what I had to do next.  Tell the kids...

I decided to go to Ethan first.  I knew that, of the three, he would have the most outward reaction.  I figured he could go to Dora and do what he needed.  I also knew that he would lovingly step aside when it was Emily's turn.  Because, that is who he is.  He has THE biggest heart I have ever known.  For some reason, he was asleep on the floor of his room.  I got down on my knees and kissed his cheek.  In that moment, I had a flashback.  I recalled the day he ran out to the car and excitedly opened the back hatch to greet Bailey (one of the best dogs, ever.) after Jim and I we returned from the vet.  Except she wasn't there.  Only her collar and bandanna lay back there.  Bailey had given us 13 precious puppy years.

I broke.  I broke the "stay strong in front of your children", rule.  I broke because my heart was breaking.  Ethan quickly got on his knees and took my face in his hands.  All I could get out was, "I am so sorry".  "What's wrong mama?  Did you fall (again, I was on my body rarely allows me this position)?  What happened?  Is it Dora?  Did she die?"  I nodded and he crumbled into my arms and we cried.  All I could get out was, "I'm sorry."  Over and over again.  He let go of me and ran to her side.  I followed and found him collapsed over her, sobbing.  I am so sorry...

After a moment, I pulled myself together again and went to Emily's room.  Dora was her dog.  Bought for her, alone, when Emily was two, by her Granddad.  I took a deep breath and went to her bedside.  I got down on my knees (BTW, God, thank you for allowing my body to function so I could be at my children's sides the way I needed to be).  I kissed her cheek.  She nuzzled in to me.  I softly called her name and she opened her eyes.  She gave me a puzzled look.  I whispered to her.  Again, all I could get out, "I'm so sorry, Em."  Her little mouth turned down and I heard her let out a gentle sob as she pulled me into her arms.  Shortly after, her father walked in and she reached out to him.  I was so warmed by this.  I left the room to tell Alec.

Alec was asleep in our room.  He must have snuck into bed with me in those couple of hours where I allowed myself to sleep. I don't know if it was numbness on my part, at this point, or just his age, but he was the easiest to break the news to. I gave him a hug and a kiss and returned to Emily.

Emily was still in her room.  I asked if she wanted to go to Dora.  She shook her head no.  She had stopped crying.  I wasn't surprised.  Emily has always held everything in.  She is the one I am most worried about.  But I know that it will come out in bits and pieces in the quietest moments in the days, weeks and months ahead.

This morning, was heartbreaking.  Last night, Jim announced that everyone was going to sleep in our room.  He and Ethan called the floor, while Emily, Alec and I would sleep in the bed.  I woke this morning to find that Ethan went to sleep clutching Bailey's collar and bandanna.  He usually keeps these on his bedpost.  Ugh.  Later, when I was on my way out the door, I walked past Emily's room and found her back in bed.  Moments before, I had asked her to go downstairs for something and I was upset that she hadn't.  I yelled for her to get up.  She did and started to cry.  I asked her what was wrong.  "I don't want to go downstairs." she said, tearfully.  I asked her why.  "Because Dora isn't down there anymore."  Double, triple UGH!

I am terribly guilty of trying to absorb things so others don't have to.  I don't know why, maybe I do.  That's a lie.  I totally know why.  Life experiences.  It is my gift.  Regardless, it is part of who I am .   I am willing to do this for family, friends and sometimes people I don't know very well.  I hate when people hurt, are uncomfortable, sad, troubled.  I just want to make it better.  When it comes to my children and their is a big struggle for me.

I know that as parents, we are supposed to let our children experience life to it's fullest.  We are supposed to protect them ,but at the same time, let them experience some pain, heartache and some of the errors we, as humans make.  It is supposed to prepare them for the future.  We aren't supposed to coddle. Life is full of death and disappointment.  And so much more that is so much better. I am so proud of my children.  Each of them are dealing with this tender loss in their own way.  And as much as I want to talk to Emily about how she is doing, I have to be patient and wait for her to come to me.  Watch and listen for her to silently call to me.  Ethan, on the other hand, is an open book.  He is easy to help heal.  He will tell you anything and most likely, in the end, will somehow end up consoling you or making you laugh.  I am sure Alec will just work his worry and concerns in to our every day conversation. He is most like Emily, but easier to crack, if needed.

As for me...I am heartbroken and bearing tremendous guilt.  I will, for the rest of my life, wonder if we did the right thing by Dora.  A few weeks ago, we seriously were considering finding her a new home.  She suddenly became aggressive towards our other dog and after years of trying to make it work, I feared for the safety of our other pets and the affect potential traumatising event would have on everyone.  We just couldn't give up on her.  It wasn't fair that, after 10 years, she would have to endure the stress of adjusting to another home and life.  A life that wouldn't include us, especially after all she had given us.  We went to plan Y.  Drugs.  We will never know what happened that made Dora suddenly so ill.  We do know that she lost 8 pounds over the past couple weeks since her last vet visit.  Maybe she was sick and we just didn't know.  It is what I have to hope for.  I can still see her eyes, looking up at me and wonder if she was begging me for help and I just didn't read her right.  Where in the hell was my "gift"  of perspective then?

I am thankful for the joy that Dora brought to us.  I would often refer to her as our, "Wild Child".  She was FULL of energy and fun.  I hope that when she took her last breath, she knew she was loved...and would be missed so terribly.  I have also wondered if somehow she knew the internal struggle I had been having with wondering if we were doing the right thing by keeping her...and decided to let go so I wouldn't have to.

Saturday, March 30, 2013

The Best Medicine

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

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

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

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

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

Happy Easter to you and your families!  xo

Thursday, March 28, 2013

In Sickness and in Health...

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

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

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

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

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

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

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

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

Tuesday, March 26, 2013

Update: On the Ball

So here is the update on my ball workout (check out, if needed).  First, I had to wait for the ball to be found (don't ask me how on earth it can take 4 people an entire weekend to locate an over-sized beach ball that has been hanging out in the basement for the past 9 years) and then it was brought up.  Awesome. Then it was another agonizing search for the resistance bands.  Though they were never given to me, I did find them yesterday in a load of clean laundry.  Hey...progress!

Day One: NEVER assume that the [most likely] six-plus year old air that is filling that ball is ALL the air needed.

Perhaps it is all for my 40-pound child.  Me?  Right.  The ball instantly became the equivalent of a bean-bag chair.  Imagine that.  Imagine your 80 year old grandmother in a bean-bag chair trying to stand up.  Your, rather large, 80 year old grandmother, who also has a good case of arthritis.  I am sure she would have been more graceful than I was trying to recover and get up!  When all was said and done/injured and depleted, I decided that what I had just been through, should more than count for my 3 minutes of aerobic activity.

Day Two: Don't get impatient when waiting for something to be done.

So the ball needs air.  People in my house are busy with homework, housework, playing, know, stuff.  I HATE asking them for help.  I am really dedicated to this ball and it helping me get stronger.  I really am!  So today, I find the pump that came with the 12 year-old ball and SURPRISE!!  It has a crack in it.  I look for the duct tape.  DO you know how much looking one has to do in a house with an accountant (who uses it to fix most anything), a crafty daughter, a Boy Scout and a cute little shadow who follows whatever the other 3 are doing, to find the duct tape?  Anyhow, I find it and duct tape the crack and make it work.  YES!  I get myself on my newly inflated ball.  It. Felt. AWESOME!  Until.  I leaned back a little to far, lost my balance and wound up on the floor...again.  Three minutes of aerobic activity.  You bet your sweet little non-swollen ass it counts!

I haven't even started with the bands yet.  Do I really need to explain why?

Sunday, March 24, 2013

On the Ball

It's time to get that "birthing ball" out again.  OK, so some of you refer to it as and "exercise ball".  I, however have most likely not touched or used this piece of equipment since my last child was brought into this world (he is now six).  Oh, I am sure there was an moment or two that I spent on it when I decided to start some crazy exercise regimen.  And then thought better of it...five minutes later.

Sometimes, I can be so ambitious, I scare myself.  I would think nothing of tearing apart of room to either paint or rearrange.  Or taking some tools to hack away at some piece of furniture to manipulate it in to something I dreamed up.  However, ask me to commit to anything that would benefit only myself?  That is a hard sell.  Not just me, but many of you, as well.  I am thinking that now is a good time to change this.

There is this funny balance to having RA.  Move too much (if and when you can) and you pay for it.  Move too little...and you pay for it just the same.  I have been in this limbo for a while where I really cannot exercise, for various reasons.  This week, I was given the go-ahead to start some aerobic activity.  Three minutes per day.  And I am to add a minute each week after as tolerated.  Oh, yeah [I thought]...this, I can do!  

Not so fast there mama!  And it gets better.

You see.  Not only are women blessed to be reminded each and every month for a predetermined sentence period (no pun intended!) that they are the stronger gender; able to endure great hormonal shifts (i.e. well handled mood swings!), severe cramping, inconvenience (that like no man has ever known or would be able to handle!).Women are also blessed to endure...childbirth!  Our bodies, after some time (and sometimes, bigger babies)...notsomuch.  Things literally can and will start to...fall out?  I won that lottery.

Long story short, until I get this taken care of, no aerobic activity for me.  In fact, standing for too long to do practically anything, reminds me of this.  Along with laughing, coughing or sneezing while standing.

I will not be defeated.  Get out the birthing ball!!  Nothing can fall out if I am sitting down!  I hope.

Back on the ball again. It is time to start getting those core muscles in shape and try to rebuild and build-up some of those muscles that steroids have really started to take their tole on.  I have to get myself a bit stronger before my "reconstructive" surgery (some women get tummy tucks or boob jobs when they hit  Well, won't this be fun!  It will be a different kind of Lift & Tuck/High & Tight!).  If a simple cold can take me down for a month,I can't imagine that surgery will have a better effect on me.

And it gets even better.  I am going to work some resistance bands.  This should be fun.  I have very little strength in my arms and hands.  I imagine this not going very well.  If you run into me in public and notice any red welts, know it didn't go very well!  Maybe, I could video tape this and become a YouTube sensation.  "Girl on Birthing Ball Loses Balance and Falls Off While Getting Slapped With Resistance Bands (that most likely snapped due to their old age)".  I can totally see it now.  Except, there will be NO video.  Ever.  Period.

So, here we are again folks.  Another promise to myself.  This could turn out to be the most catastrophic promise I have made to date.  Three minutes a day on the birthing ball...with resistance bands (with limited balance and strength on my part).  This should be so damn good.

Perhaps I should change back to drinking lots of water in a day....

Monday, March 4, 2013

Digging Deep

Whenever things aren't going as I have hoped or get particularly rough, I almost always try to remind myself to put it all in perspective.  I remind myself that it could be worse and that somewhere, somebody in that exact moment is suffering some terrible reality and I should suck it up and move on.  For the most part, it works, for me.  For a while.

One of the people I think of is my Aunt.  She fought a courageous battle, for many years.  She was feisty, smart, talented, detailed oriented, thoughtful and damn strong. She was one of the most determined people I have ever met in my life.  SO determined, that she found a way to get a very specific message to my mother, through a medium!  I will never forget that.  It wasn't something I truly believed in.  And some may say, it was a good guess on the mediums part.  I don't think so.  I walked in to the room where this women I had NEVER met or spoke to was.  The first thing she said to me, "Who is Kathy?" (I sat there in great desperation trying not to give my surprise away!).  And as if Kath knew I was still doubting, she gave a message for me to carry to my mother.  She was scolding my mom (her sister) from....I don't even know where!  It was a message I knew nothing about.  But my mom did.  That is a whole different kind of strength that I am not sure I would hope to achieve!  But the strength Kath had while she was still here with is is something I wish I had an ounce of, sometimes.  When I really need it.

I still struggle to admit here, in person and even to those closest to me how difficult things are.  A lot of that is because I just feel guilty for ever even complaining about what my troubles are.  Because I know that there are others who are struggling with so much worse.  Even though I know it most likely is healthier to admit what is true for me.  I just can't do it.  I also struggle with balance.  The balance of trying to keep up and not hold myself or, God forbid, anyone else back, while keeping in mind that I have to be cautious or I am no good to myself or, God forbid, anyone else.  I hate admitting that there are somethings that I simply cannot do, either at all or even for that moment.  And it angers me when I have to.  What I have found is, that by not being entirely upfront, I have left some to come to conclusions of their own that may not be right. I have also found that offering the simple explanation (I have RA), just isn't enough.  Unfortunately, there is still so much that is not understood about RA that it could sound like I am struggling because of "arthritis".

Things are rather complicated here right now,  They have been.  Honestly, my husband and I are OK with that.  This fall and winter have proven to be a rough one for us.  Not because any one of us was so terribly ill that it was scary, because it never (thankfully) got there.  What does happen though, is that every time someone gets sick, so do I.  When I get sick, it throws a whole schedule off.  I can't get an infusion while on antibiotics.  Life gets more painful without the infusion and any progress I have made, slowly starts to slip.  And we start all over again.  It is a ridiculous cycle that we are trying like mad to keep up with and make protocols for.  I really am OK with that.  Because to say that we are at the point where we have to make a plan, means that we are no longer taking shots in the dark and wandering aimlessly wondering what on earth is going on with me.  We know.  And it is never going to change, so we have to.  I would be lying if I said there was complete acceptance.  I have accepted enough, for now.  Baby steps.

Over the weekend, we reflected on where I was a short time ago.  My husband spoke of what it was like to watch me struggle to move and how he would have to walk me from one spot to the next, like I was an old lady.  So we know that we are on the right track with treatment.  Doses still need some adjusting, but we are headed in the right direction.  We also talked about our "behind the scenes" life.  And discussed if that was the best way to live.  By hiding what life is really like here and how much I am still not who I was before RA. I think I would prefer it that way.  For me, there is dignity in it.  Out of respect for those who follow and just  personal therapy, I don't mind sharing here.

Last week I had another curve ball thrown at me. Nothing life threatening, just another setback that reminds me how complicated things are when I really don't want or need them to be.  A couple weeks before that, I was told that I could expect to be feeling better (after the setback of illness this season) this summer.  SUMMER?!?  And with the discovery of last week's news, I wonder if it will ever get any better.  Or if this is as good as it gets.  That's not self pity.  You should know that every step of the way, through this whole ordeal, we have adapted.  Adapted and moved forward (albeit kicking and screaming at times, but forward!) as required.  Even when failed efforts and setbacks occurred, we modified and kept on.  I should say, my husband is the one who has adapted best.  Taking on more and often all that I could not.  Without a single complaint. 

It gets so discouraging.  Plans get put on the back burner and I wait.  Currently, I am waiting to get a little stronger so I can complete at least ten minutes of yoga. I was getting there.  A few weeks ago, I was ecstatic when I could make several trips up and down the basement stairs to do laundry, a day!  Ask me how that is going now. It's not. My day is made up mostly of small goals. Things that many take for granted, like making the bed, dishes, making dinner.  I will most likely exceed those goals at some point and then be able to make larger ones.  And then be set back again. I have done this more times than you can imagine.  This is where I really dig deep for strength, because giving up can seem easier, at times.  Luckily, I have never gotten there.  But I wonder if I ever could.  I sometimes think the thought of disappointing some keeps me from giving up or settling for less from myself.  My husband once told me he thought I would have a better chance at surviving boot camp than he (Mr. Athlete) would because I am far more determined and would make it happen.  How could I ever let him down?  Perhaps, this is my own personal boot camp.

I hope I can be as strong as he thinks I am.  To hear him speak of me, I swear he thinks I could also deliver a personal message from the great beyond.  Look out Joleen & Gina!

Friday, January 25, 2013

A Voice

I have sat down to write several times this week.  Each time, I would get a couple of sentences-or paragraphs in and stop.  I was afraid that the words would be misunderstood.  For complaining, whining or a full-out pity party.  I also knew that I made a promise to be honest.  Honest is tough for me when I am struggling this much.  Because honest makes me cry and feel completely broken.  Weak.

Then I did some catch-up on the computer (a painful task for my hands and fingers these days).  I read a post that caught my attention the other day, but didn't have time to read.  You can read it here too .  I have always been a firm believer that things happen for a reason.  Opportunity is there...if you make the effort to see it.  RA is about to have a voice louder than I, personally, have known it to have, yet.  Rheumatoid Awareness Day, February 2, 2013!

As you know, I thought that this blog was going to be based on something entirely different.  Weight loss.  Well, Rheumatoid Arthritis has the staring roll and weight-loss, is a special guest star.  For now.  

Being diagnosed with RA has been life-altering in more ways than even I can imagine.  So, to ask others to grasp it, when I can't (yet), is somewhat unfair.  But we all need to.  When it comes down to it, the pain is something I deal with much better than the overall feeling of being misunderstood for something I am not.  Or ever have been.  Weak.

I am so excited to have access to so much information. Information, I feel, is important to make others aware of what RA means to many.  To bring to light the truths of the misconceptions.  To call BS on the ads that make it seem as though RA patients are living a "normal" life with RA when on the pharmaceuticals being advertised.  Sure, they work to help minimize damage and some do increase quality of daily living.  But they don't always work, for many.  

Here's the thing,  RA RD (Rheumatoid Disease) has many factors of any disease/condition.  It is life-altering.  It is pain. Fevers.  Flu-like symptoms.  It is deformation.  It is feeling hopeless (at times), sadness, tears, worry, exhaustion and so much more, including...invisible to most.  It's doctor appointments, blood work, scans, x-rays, pill boxes, side effects.  It breaks you down.  But, because RD is so misunderstood, none of that matters, to most.  Because we don't hear about what RD really is.  

For me, lately, RD is pain.  And tears.  Frustration.  Lies.  Lies. Lies.  Because, what I do when I am out, is LIE.  I feel like crap, but won't tell you.  Because [I feel] everyone is looking at me and wondering why I am not involved as much, doing as much, smiling as much.  And why wouldn't you? Because, even if I reminded/told you that I have RD and am having a rough time (flare), would you really know what that means for me?  Do you know that I walk over objects on the floor because I can't bend to pick them up...and that when my children see me bend over, or try, they say, "I am sorry you had to bend over Mommy."  Do you know that there is little that I can accomplish from start to finish without help?  Do you know that I am struggling with a new "normal" of disarray?  Not fair or easy when you are an organized soul who finds peace with structure and order.  I drink my coffee black sometimes, because I can't open the creamer/milk container.  Even if someone is here, I won't ask.  I save my requests for the bigger things looming in my mind.  And the pain.  Pain that makes you cry out in your sleep.  I don't even know how to expand on the pain topic.  Just know that I work through a great deal of it.  Right now, it's pretty bad.  I can't get my infusion because I have been sick and on roundS of antibiotics.  

RD is feeling left behind.  Our house was under siege by the flu.  Twice. Little, by little, they all (thankfully) recovered and are moving forward and resuming normal activities.  Me.  I am still stuck in 
 flu-like RD limbo.  RD is mourning your old life and having to pick yourself up and find a new normal...again and again.  Because, just as you think you've got it...FLARE!!  And you pick yourself up and start all over again.  It gets exhausting.  But I do it.  Every time.

Never assume.  Don't judge.  Learn.  Read.  Understand.  Be supportive.

I need to find out more.  I need to help spread the word.  I would love to be instrumental in bringing this awareness to many.  I need to connect with others like me.  To find solutions.  Break barriers.  To give and find strength and inspiration in the many that are struggling with all the same issues.  I want information and I want to inform.  I want awareness.

Yesterday, I promised my doctor that I would be patient. He tells me that this summer, I could see a difference.  We will see.  In the meantime. I intend to make a difference.

Rheumatoid Awareness Day is a big deal.  It is a voice.  A voice I really need to hear.

Thank you, Kelly Young for all you, somehow, manage to do.  This is a big deal!

Saturday, January 19, 2013


Dear Emily, Ethan & Alec,

I am told that I am very talented when it comes to expressing myself in words.  I sure hope so.  Because I want this to be something you someday come across and be able to read it and feel so very deeply each and every heartfelt expressed word.

I love you. To the moon and back.  Infinity.  With everything I am and have ever hoped to be. I hope you are never able to fully comprehend my love for each one of you.  Because there is something so magical and great about endless.  Infinity.  When I imagine the universe and the fact that it is...endless, I am in awe.  That is how I want you to feel about my love for you.  I love you...But wait! There's more...But wait!  There's more... Love! More than you can ever comprehend.

Like every parent, I take you for granted.  I don't always take the time to listen, look and talk to you as much as I would like. And every night I go to bed with regret.  Regret that another day has passed and I didn't _______.  But let's be real. There are three of you :0)   I am one mama.  It is, in part, because of these regrets that I have always been terrified of you growing up, older and someday, out.

These days and those behind us are what I live for.  You need me.  You love me unconditionally.  I am  your hero and for the most part can do no wrong.  I don't believe I have disappointed you (at least not greatly), yet. And if you have disappointed me, it's been a G-rated one that we overcame with a simple kiss and "I love you". You are tiny, sweet and full of the innocence God intended you to have.  Each day you learn something new and are genuinely delighted and/or inspired by it.  I can snuggle with you and each one of you still allow me to kiss and hug you in front of the bus every day.  In fact, you want me too.  You giggle like the beautiful children you are.  Thank you.  I love the sound of your laughter.  And so much more.  Your growing up...scares me.  And if I had one wish, it would be that we could all stay here, in this moment, forever.  At least, that was my wish.  Until yesterday.

Terrible things happen all around us all the time.  For the most part, most of us are blissfully unaware.  However, in the past month, the world was aware when 20 small children were taken, tragically, too soon and left holes in the hearts of many.  Yesterday, I heard of another hole left. I can't imagine.  I can't stop looking at you, Alec, and wonder(they were all about your age. Six.)...  I try to shake it off. I can't help but wonder what these parents and family must be feeling.  Gone.  Just like that.  And yet, the world around moves forward.  The minutes turn into hours, days, weeks, etc. For many, they are stuck in that one moment.  That moment where, just before everything was OK. And then it wasn't.  These parents will never get tomorrow with their babies.  They are blessed with the memories of the days lived out and have to be content with the time they had.  Tomorrow, for them, will be different from now on.  I bet they would give anything to live with the pain I have inflicted on myself.  The pain of watching you all grow.  The blessing.

My gift to you, in honor of all those little ones, is to watch you grow. And enjoy every single second.   Without wishing you could just stay this little forever.  Because some are not fortunate enough to have tomorrow and are forever 12, 10 and 6 in the hearts and minds of loved ones.  Because the pain of imagining you never going onto middle school, high school and so on as a result of some unknown tragedy is unimaginable.  And because I love you so much.

Nobody can ever predict what the future holds.  And while I have always loved you to the best of my ability, I do feel I am showing you a bit of "infinity" by getting over my fear of you someday not needing me, first.  Grow babies.  In twelve years, I have laughed, smiled and loved harder than I have in my entire (almost 40 years of) life.  You have allowed me to grow as a person more that I could have ever imagined and blessed me with gifts I struggle to believe I deserve.

Grow.  Show me what you've got.  Learn.  Live.  Love.  Be loved.  And know, that nothing has ever brought me more joy than watching you grow.  I have a feeling the best is yet to come.

I love you.  Infinity X Infinity.  Forever.

Have the bestest day, ever.