The RA Monster


Rheumatoid arthritis is a pretty terrible monster if you ask me. It takes and demands so much from as it chips away at your confidence and emotional state.  From the moment you are diagnosed, you realize that your entire life has changed and will continue to stay changed for as long as you live.   I often wonder where I will be in ten years. I know very few people who have had RA more than ten years.  Most of those I know have had it between five and ten years.  Those people give me hope that I still have at least seven years before things really get worse for me. And maybe, when they hit their 1o year mark with RA, they will give me further hope.  Right now, I am just focusing on the short term because I know all too well how short life can be.  Who knows what tomorrow holds? Maybe there will be a cure tomorrow, maybe I will go into remission, or maybe RA will win.  I don’t have any answers so I have to focus on the here and now.

I have tried treatment after treatment, taken my medications and have only missed a dose here or there, taken supplements and changed my diet.  I have also tried to maintain an active lifestyle despite my limitations.  Here is the thing – nothing ever works for very long and that is the frustrating part.  Just when I think I am close to remission, I have a setback.  In May, it was an automobile accident and after a good month there, the flare-ups are coming back in full force.

What I have learned in the past three years is that no matter how diligent I am about my health, how much I exercise or the quality of activity I do, or even my conscientious diet changes, my RA pain and symptoms are to stay.   I have gotten to the point where I feel like remission is not for me. My rheumatologist for some reason seems hopeful but I don’t.   Even though I had a strong mindset with it comes to dealing with RA in my life, I don’t feel that I can ever really be free of its claws. 

Someone once told me that it is my mental mindset that is holding me back. However, that person doesn’t have RA or a deliberating condition like RA.  Here is the thing – I have tried and tried to convince myself that remission is possible but I have come out empty handed each time so, of course, I am doubtful.  Moreover, while the setbacks are only temporary, they are nevertheless a part of my life.

It is pretty hard to remain optimistic about RA when the disease is like an invading monster that puts your body in a whole lot of pain.  This monster feels like it has taken my body and emotions hostage and everything is suddenly out of my control.  While the flare-up will eventually pass, it does not mean that I don’t feel drained and defensible while it is happening.  The hard part is that I still have to live my life as it is happening.  I still have to go in to work, I still have to take care of my home and my children, and I still have to live my life.

The past week, it has been rainy and cool around here and my body is acting like a freaking weather barometer in response to the changes in temperature and the dampness.  And this didn’t just start after the rain or even during, I felt it long before the weather changed and here I am going on two weeks.  I am really thinking about moving to Arizona.  If anything, at least I will be in less pain. 🙂  Yesterday, I was dragging my right leg around before of how painful and stiff it was. It was not moving and neither was I.  Today, I am dragging every part of me and I would just rather be in bed. It does not take a lot for RA to win and drain all your energy.

Yesterday, I had an appointment with the chiropractor which I was happy to go to because it is not just my RA pain that is making me insane.  The herniated discs in my neck and back are acting up too.  A chiropractic massage and ultrasound massage really helped to elevate some of that pain.  Too bad, I can’t have that for the rest of the joints in my body.  Now that would be nice.  I have a hand held massager but it does not seem to offer me the same benefit. 

Another comment that I received recently was that I have to trust my body and trust that is healing.   Wishful thinking on my friend’s part but it is not that easy.  I do want to trust my body and trust that it is healing but I don’t feel that it is.  Also, my thoughts and emotions are based on how I physically feel rather than how I feel emotionally.  I feel like crap physically and obviously, the emotional response is warranted. 

No one knows what it is like living with this horrible monster – well except those of you who struggle with this disease.  It evades when it feels like it and often times, when I feel like I have finally gotten control.   It seems to be worse at night because that is when I feel the throbbing to be worse than it has been all day.  During the day, I am too busy to notice how bad it is but come nighttime, I am not able to fight that monster.  My solace finally comes when I am able to fall asleep hoping that I am not awoken by the monster’s fiery.

Despite the daily ordeal that RA puts me through, every day I find strength I never had.  I find it at night as I try to sleep despite the throbbing and I find it daily as I go about my day.  While I fear that the worst is yet to come, I know that these daily lessons are only preparing for that big battle ahead.  That horrible monster either wins or he doesn’t but for now – at least for now- I have some control.  I may not believe that remission is possible but I do believe in my own capabilities and strengths.   I remember when I was first diagnosed that another RA’er told me that “yes, the pain would get worse,” but that I would learn to deal with it the more time that passed.  I have taken that advice with me every day since.  If not for that advice, I think the RA monster would have won a long time ago.

 

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10 Responses to The RA Monster

  1. You poor, poor dear!! Every single thing you said and feel regularly is completely warranted. It’s almost a put-down when people who have no idea can offer up such easy hope and suggestions, isn’t it? I suppose no one can fully understand the extend of others’ lives, situations and difficulties. But sometimes just an “I’m sorry” is best.
    I’m sorry.

    • Lana says:

      Julie, thank you for your kind words. RA is one of those diseases that make life hard. It doesn’t stop it but it makes it hard. Thanks again for your kind words.

  2. Vickie Radaker says:

    thank you for puttig into words how I feel everyday after 16 years of RA, it has only been the last 2 that RA has become severe and active and destructive. I also put up with well meaning friends who think they know the cure for this. As you said, only those of us with RA can fully understand what the other is living with. i also try to keep it just for today, for tomorrow will come with its own.

    • Lana says:

      Hello Vickie, Thanks for coming by and commiserating. I am sorry that you are struggling as you are. I understand exactly what you mean by well-meaning friends and about just going for today and seeing what tomorrow brings. That is all we can do.

  3. Wren says:

    Lana, my RA went into remission, slowly but surely, after 10 years, and then stayed that way for approximately six years before slowly, slowly coming back. Please don’t give up hope. RA is forever, but it doesn’t necessarily mean that it will be constantly terribly painful.

    My thoughts are with you.

  4. Kelli says:

    I completely understand. That is the reason why I turned to blogging and so I could write out my frustrations and be heard by those who REALLY truly knew what I was feeling and how I was hurting. There is comfort in knowing you are not alone. A book has changed my life lately, When The Body Says No by Gabor Mate. Read it! It is so hard to sift through all of the advice you get when you receive a diagnosis like RA. I don’t want to be another voice in your head telling you things you should do but this book has helped me SO much to find and trust my own advice. Thinking of you 🙂

    • Lana says:

      Hello Kelli. Thanks for coming by and for understanding these feeling. I will look into the book. I could use another voice to change my perception. I know that these bad days throw the positive emotions out the window. Again, thanks.

  5. Nan Hart says:

    Lana, I am 15 years into RA and each year has given me new wisdom and ability to cope better with RA. Believe me when I tell you that you CAN handle it as you have proved over and over. Take heart, my friend, you are one of the “warriors”! Nan

    • Lana says:

      Thank you Nan. You, Wren, and Vicki are giving me hope as to how things will be when and after I hit the 10 year mark. It is great to be a warrior!

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