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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!

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