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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.