Saturday, July 24, 2010

An Invisible Disease

I grew up with a very active lifestyle, playing baseball and football, throwing the shot and disc at track events.  In addition, I played golf and raced motorcycles, a weird combination I know, but I enjoyed all of these activities. 
I enjoyed pushing myself beyond normal limits.  When most people were content to watch tv or cook out on the weekends, I was with my friends racing through the roughest trails imaginable, or Mike and I would head out for a 50 to 80 mile bicycle ride.  I started riding at least one century (100 mile bicycle ride) a year in 1986.  In 1987 Mike, Dusty and I did the Ride AMOK, riding 130 miles through 4 states in one day.  
I quit racing when my daughter was born, I wanted to be a full time dad for her.  I loved spending time with her.  We did things together, I would paint her fingernails and toenails, we had a date night one night every week until she outgrew it.  Just she and I would go do whatever she wanted to do. I never thought about illness or disease, especially happening to me, I was invincible!
I am lucky, RA did not call on me til later in life.  I could not imagine having to raise kids with RA, I know so many do and I honestly don't know how you do it.  When it finally did hit me, I had never hurt so bad in my life.  I would go to bed in pain, sleep in pain and wake up in pain.  For the first 3-4 months after being diagnosed, there was no help or relief coming my way yet.   I literally prayed to die.  I sold all of my motorcycles and bicycles during this time, I thought my life was over.
I could not lift my arms over shoulder high, my hands were on fire and so swollen that I could not close them to make a fist, my feet, hips, knees and ankles all hurt equally bad.  
I have been on 3 different meds for RA since being diagnosed.  I am doing better, on a good day for me, I have a pain level of a 2-3.  I hurt everyday, I honestly can't remember what it is like to wake up and not hurt any more.  I did not ask for it, I do not like it, but I have accepted it and try to enjoy life the best that I can.  Somedays that means taking one of my motorcycles out for a long hard ride while other days the best I can do is kick back in the recliner and watch an old movie or two.  Living with RA has been an ongoing educational experience for me.  
For me, I think one of the things I miss the most is not motorcycle racing (sure I would love to line up on the start line again with the smell of 2 stroke oil in the air) but I miss the time that RA has robbed from my family due to hurting, fatigue or the physical inability to go with them.  RA is a cruel, invisible disease.

21 comments:

Living It, Loving It said...

Very heartfelt Terry. When I was first diagnosed, I never imagined how strong RA and FMS would make me. We are still pushing the limits; we just pay for it later. :)

You know we live in a time where disease modifying drugs are available and while I wish I did not have to struggle while raising my children, I am grateful that my diagnosis did not come in 1988 or 1968. The first few months after diagnosis are the worst of it. With time and experience, you teach the disease who is boss. I know what you mean about pain levels, hurting every day, and not remembering a time when you were not in pain. I feel like I have been sick all my life but I accept this fate and keep moving.

Post your link at my blog. Thank you for speaking up.

rheumablog said...

Ah, Terry. It hurts to list all the things that RA changes in our lives when it hits, and I hear that pain so clearly in your writing.

This disease DOES take a lot from us. It also gives us something, too, though -- the knowledge that we're far stronger, far tougher, and more persistent and determined than we'd ever have believed possible in "the good old days." There are things I miss from my "before RA" time, like horseback riding, but I was never a real athletic type, so I don't miss that aspect of my life.

I do miss other things, though. Today I made peanut butter cookies. It should have been easy, but instead, it took me forever to stir all the ingredients together because my hands were hurting so much. I didn't even think about that until I'd measured everything into the bowl... oh well. In the end, the cookies were delicious, a fun, rare treat. I'm actually sort of proud I was able to make them in SPITE of RA.

Thanks for a thoughtful, honest and thought-provoking post. I hope you're feeling well at the moment, and that you'll continue to throughout the week.

Hugs,
Wren

mallen said...

RA is cruel. Invisibly taking our life away bit by bit. I am glad that I was a bit older (though younger than you) before RA hit me. I do have school age children at home and my biggest regret is that they have to grow up with a RA parent. However, they are learning compassion and patience through me. I hope you are doing well Terry. I'm off to go camping this week and I hope that RA gives me a break.

Love Mallen

tharr said...

I agree about being grateful for the drugs available today versus 20 or 30 years ago. It is hard to battle the pain with these drugs somedays, I wouldn't want to face RA without them.
Sorry about not linking at your blog last night. I was hurting from a rough day at work and got a post up, got something to eat and went to bed. I forgot to come back and link to you.

tharr said...

Wren, it does hurt. I don't miss the activities I was involved in so much, I just wished it didn't hurt to do everything now. You're so right, it shouldn't be hard for us to do normal everyday things that most people take for granted. The cookies sound good, I have a big time weakness for peanut butter. I finished my work week a couple of hours ago, I have 3 days off and hope to feel good enough to ride Tuesday or Wednesday.
Talk to you later.

tharr said...

Hey Mallen, my hats off to you, Lana, Kelly, there are so many of you raising kids while dealing with the pain of RA. I really don't know how you do it.
Camping sounds so good, we love to go camping, but it is way to hot here right now for tent camping. We have thought about getting a pop up camper but for now, we still use a tent. I hope that your RA gives you a break also.

livingwithra said...

Terry, excellent reflection on your life journey and how RA snuck in and tried to steal it. Although our lives might never be the same, we have to fight back and not let it dictate our entire life. We might have RA but it doesn't have us!

Seems like our little experiment with Humira, started about the same time, is working...so far.
Andrew

tharr said...

Hey Andrew, I have had a good life, but it's not over yet. I refuse to let RA win, although there are days where it does have the upper hand.

I'm keeping my fingers crossed (if my fingers were able to be crossed - lol) about the Humira. I hope it continues to work for both of us.

rheumforgod said...

Thanks for sharing your story, Terry. I LOVED reading that you took your daughter on dates with daddy. You made incredible deposits into her life that will impact her forever. If only more fathers understood the importance of letting their girls know how valued, cherished and loved they are. I look forward to reading more on your blog in the future.

Squirrel said...

Very heartfelt post, Tharr. You strike me as a very courageous guy, and still trying to enjoy life despite the obstacles. I hope your meds help you get more 'back'.

tharr said...

Kelli, I'm so glad you stopped by. I was scared to death when I found out that I was going to be a daddy. I had not been around small kids at all. All of my cousins were younger than I was, my friends up to that point all raced and most of them were single. I had no idea what to do with a kid. I was perfectly calm sitting on a start line for a motorcycle race, but the first time my wife left me alone with her ... I was absolutely terrified.
It didn't take long to pick it up though and soon we were having a pretty good time together.

tharr said...

Thanks Squirrel, I don't feel very courageous, but I'm not going to lie down and let RA walk all over me. My feeling is that if I give up things I love to do (riding motorcycles) then the RA has won. I am starting to feel better, still not great, but better.

Anonymous said...

Terry
I think it was worse when I had no idea what was causing my problems and it was kind of a relief to find out that it was RA and not some series of unexplaned problems.

You put it into words well and that is why I keep coming back to check your blog.

From this end, you seem to be doing quite a bit in spite of the fact that it's a lot less then you used to do.

The drugs, moods, and all the little ups and downs make RA a pretty depressing reality.
I think your blog is a good deed.
Keep it up and hang in there.

Phil from Syracuse NY

tharr said...

I agree Phil, prior to being diagnosed, I knew something was wrong with me. My mind worked overtime with "what if it's this or that".

I do push myself and am still able to do quite a bit, even though I have had to give up several things I would still like to be doing.

Thanks for the compliment. I keep working because I have to, I keep riding because it's what I love to do. When I give up riding, RA has won.

mary said...

You seem to be holding fast to some of your past life. You have made some adjustments (switching to Dual)to continue to ride and that is a lot. I was diagnoised in my 20s so it is hard to remember a time without RA now. Like you I was super active and had to give up many of the things I loved. As time has gone by I have found ways to bring some of those things back into my life. Riding my Cannondale is different now but I am just glad to be back on the bike. Shorter rides and not as often but it is still doable.
I hope your RA continues to improve on the Humira. It can take up to 6 months to see just what it can do for you.
By the way love the iron bridge pictures. Some of them are real finds!

tharr said...

Mary, glad you stopped by. Hope you will come back. I love riding so even though its not my favorite type of riding, at least I'm still on a bike. I was diagnosed 8 years ago. I had a Cannondale road bike as well as a Cannondale mountain bike. Excellent bikes! I now have a cheaper mountain bike with disc brakes and suspension at both ends. Like you, I can only ride short distances thanks to my RA and OA.
Glad you liked the bridges, I have loved iron truss bridges for years. I have a ride planned, once the weather cools down a bit, to go photograph a bowstring truss bridge that was built in 1874.

mary said...

Tharr,
Cannondale is a great company. To illustrate, I cracked my frame in an accident about year ago. Actually bent the top tube in the accident and after riding it for many miles after that the frame cracked. They agreed to replace the frame for free. Now that is old time service.
I was diagnosed 24 years ago, in my 20's. It is hard to give up some of the things we loved but important to hold on to the things we can still do. I can still crank out a century during my good periods. Hurts like heck but I can still do it now and then.
Mostly I settle for a nice short ride and enjoy the weather. I'm just glad I can still ride.
Fall is coming. Crank up that engine!

tharr said...

That's awesome Mary, a company that really stands behind their guarantee. I rode with several guys that had Cannondale, but never knew if the frame replacement was real or not. I had a car pull out in front of me on my road bike and tweaked the front fork, but thats the most damage I ever inflicted on one of my Cannondales.

It's good that we can still enjoy part of our pre RA activities. Keep on riding!

Living It, Loving It said...

There is an award for you at my blog.

http://ohboy-boys.blogspot.com/2010/07/winning-award-sharing-it-with-15-others.html

superbitch said...

Great Post, Terry! And thanks for acknowledging those of us raising kids with RA. It is one of the hardest things I've ever done in my life. Here's wishing more pain free days for you.

- RA SB

tharr said...

Thanks SB. My hats off to you and all others that are raising a family while battling RA. I said it before, I don't know how you do it day in and day out. Take care.