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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!