Monday, December 13, 2010

Changes

If you were to meet me on the street, you wouldn't know anything was wrong with me.  I like that for personal reasons, I'm not someone who likes attention drawn to them, but it makes our acceptance suspect.  Other diseases have obvious trophies, rewarding the patient for their participation.  When you see me, you do not know how I struggle to take my first few steps of the day, or how after taking those first few steps of the day, I can tell how good or bad my day will be.  You don't see me grimacing while putting my socks and shoes on everyday.  You don't notice my hands, fingers now starting to hook and curve, or how it hurts somedays just to grip and hold things.  I drop things now, as an accepted part of my life, and usually joke about it or scold myself for being so clumsy and dumb.  If you were to meet me face to face, I would most likely be smiling.  I don't always smile outwardly, due to the pain, but I'm still smiling on the inside.  

You wouldn't know that I have had to give up golf, riding bicycles (I still have a mountain bike but days are few and far between when I feel like riding it now), I play bass guitar but my fingers limit my days that I can do that, I gave up woodworking and sold most of my saws, routers and planner because clumsy fingers don't belong around saw blades.  

If you read my blog much, you know that I ride motorcycles.  What I really love is to ride single track, but my RA doesn't allow me take that much abuse anymore.  I have started riding dual sport rides instead.  Don't think that this pain free either.  It hurts getting on and off of my bike, once on, however, all is good for the first 70 miles.  By this time, my right hip and hands are starting to voice their opinion about the ride.  After that, somewhere around 110 miles, my right shoulder starts aching and, well ... my feet hurt all of the time.  Although it hurts, I  refuse to give in on my riding.  RA has taken too much from me in the first 7 years.

This might seem like a lot of change, but in reality, I'm no different from anyone else with this disease.  You just don't know that when you meet us on the street.

14 comments:

mallen said...

I hear ya, Tharr. Sometimes not having visible signs is frustrating, because people expect me to be like a normal 36 yr old woman. But then the vain side me is thankful I don't. I continue to go camping because I love it, but it is a lot harder now. Warm hugs to you...

tharr said...

Mallen, I love going camping. We have a small lake about 35 miles from the house that has great activities for the whole family can do. We all enjoy swimming, hiking and fishing there. And my in-laws have a place on Lake Eufaula in Oklahoma. Sometimes we camp out there, but most of the time we stay in the cabin.

rheumforgod said...

I was originally going to just say that I think this is the best post I have ever read by you. But now I have to mention that camping is awesome! Love it. Grew up camping with family all over. How neat that you have activities like that so close to home.

Hope you have a great day. It FINALLY got into the 20's here in TX. Was 70's for so long-and even in 90's some days. I was actually wanting a bit of winter for a change. And I am doing ok. I haven't really said anything to many people yet. But I think I'm getting better Terry. I keep second guessing it. But I really think I am. Thanks for a great post. You are in my prayers today. :) Kelli

tharr said...

Thanks for the awesome comment Kelli. I love getting out in the woods anytime, riding, hiking or camping. Mike and I used to camp a lot and have some hilarious stories/survival tales.

Personally, I wished we had the 70 degree weather here. I'm glad the cold isn't hurting you.

Lana said...

I know what you mean about us not being any different. We have limitations and difficulties that no one can see. In some ways, it is a Godsend and in other ways, it is a curse. Today, I can barely step on my feet and last night, every inch of me ached. Once I lay down to sleep, I could not and did not want to move. I spent the entire night wondering why I was in so much and the pain gets deeper into our joints the longer we live with this disease. I was telling my husband I feel the pain radiating inside my bones. It really sucks because we are only different inside our bodies.

tharr said...

Lana, we all hurt and we have all had to give up things we loved to do because of this disease. I'm sorry you're hurting so bad (in more than one way) right now. When your feet are hurting, it makes for a long, miserable day. You're so right, I still want to race my motorcycle and go for long bicycle rides. But we both know that'll never happen again.

Squirrel said...

Great post. It is indeed a blessing and a curse. I'm always inspired that you keep doing the things which are really important to you even if they cause you pain.

tharr said...

Thanks Squirrel, you and Mary inspire me being able to ride long distances on your bicycles. I wished I could do that again. That is what is great about blogging, we all help inspire each other to keep going and not give up.

Laurie Grassi said...

All I can say is good on ya, Tharr. Keep on biking! It takes a special person to keep on going, especially when people don't have a clue what's going on...you're one of those special people. :) L

mary said...

Terry, Great post. All so true. Sold my guitar many years ago. Just couldn't play anymore and figured someone else could enjoy it. Although I still hike (slowly), camping went out the window when I was diagnosed. No sleeping on the ground anymore. Your riding is a testament to how stubborn we all can be when it comes to things we love. Adjust don’t give it up could be an RA chant.

tharr said...

Laurie, thanks! Not special, just stubborn. Glad you are getting some relief from your shoulder finally.

Mary, thank you. I still play my bass a little, when I feel up to it. We still camp some, but now have a 3 room tent and use cots, no more laying on the ground for me either. Thats a pretty catchy phrase, hang on to it.

Wren said...

You've handled the changes that RA forced on you with grace, courage and good humor, Terry. You never fail to inspire me with your tenacity and patience.

Rheuma is a tough disease to live with because of the pain and disability it causes, but the fact that the pain and disability comes and goes without warning and rarely shows makes it all that much harder. I think those of us who have RA and who do all we can to live well with it are pretty special people.

Thanks for sharing your thoughts and feelings about it with us. You've got grit--and I bet you've got an infectious laugh, too. ;o)

Anonymous said...

Terry
Well said. You really hit that one on the head. I only tell some people and can tell by the look on thier faces if they have a clue or not. I think for me as an individual, that keeping positive is the hardest thing to do, especially when I can't sleep in the middle of the night or that whole horrible morning stiffness thing.
Phil - Syr

tharr said...

Wren, thank you for the awesome comment. I don't know about the grace and courage, but I laugh at myself just about every day! It's tough enough physically to live with, but then we see things that we love to do slip away from us. I don't know about infectious, but I laugh every day. It's part of what helps keep me sane.

Phil, it was hard for me deciding who do I trust with sharing my condition. I was disappointed with some, surprised by others. In the long run, when you're chronically ill, you find out who your real friends are. I'm lucky, I can sleep most of the time now, the morning stiffness is a whole different story though.