Rheumatoid Awareness Day

Rheumatoid Patient Foundation (RPF) announces the establishment of Rheumatoid Awareness Day to be held each year on February 2, giving people with the chronic illness known as rheumatoid arthritis, or rheumatoid disease, a day of recognition. Because the disease is commonly presumed to be a type of arthritis, awareness is lacking, causing problems with disability accommodations, clinical care, healthcare reimbursement and research funding.  For information on how to support Rheumatoid Awareness Day, visit http://rheum4us.org/rheumatoid-arthritis-awareness-day/.

 
How great is that, we finally get our own day and some much needed recognition that it is a disease and not "just arthritis".   My flare is easing up again.  Last post was about corresponding with a newly diagnosed patient and not long after I had relived some of my thoughts and emotions after my diagnosis while writing to her, I experienced pain that went all the way back to my  pre-diagnosis days.  My left hand (wrist, hand, fingers and thumb) started swelling.  Soon the joints were warm and stiff.  The next day they felt hot and I could barely use them, soon I was in constant pain and could not sleep.  The hand would wake me within an hour after falling asleep.  It got so bad that I could not even use the computer last week.  Then last Thursday, after 8 days, it began feeling better.  I was once again reminded how fortunate I am, most days, and how many people with RA live everyday.

I felt good enough to head out for a good long ride Monday and test my left hand out.  Greg had been hounding me to go ride so I told him to be at my house at 10 am.  Greg's attention to time leaves a lot to be desired.  He needed to work on his bike and was wanting to use my garage and tools so I thought if he could be here by 10, we could leave by 11.  At 10:30 he calls and hasn't left his house yet.  Randall loads up and heads on out, not wanting to stick around for Greg.  Greg finally shows up and we leave at the crack of noon.  It was 72 degrees, high gusty winds and we ran through some light rain twice, just missing heavier showers a couple of more times.  We found a cool old abandoned rock building that was most likely a general store at one time.  We also crossed the longest bridge in Arkansas at 1.6 miles long over the Arkansas River.  On the way back I ran across a viscous dog.  He charged into the road, barking and ran out in front of me to cut me off.  Most times, if you hold your line, they will just run along side you and bark.  Not this guy, he jumped down on the asphalt with his back legs still up in the air and was barking and showing his teeth ... square in front of my front tire as I was still rolling toward him.  He finally moved at the last second.  Oh ... I forgot to mention, he must have been all of 6 pounds!  Bwahaha ... little dog syndrome big time.  Not bad at all, Jan 28th, 72 degrees, 217 miles and minimal pain ... a good day.

My KLR isn't sexy, doesn't have amazing suspension or brutal hp, but is still fun to ride.

A beaver dam we rode by yesterday.

Old building just outside of Coal Hill.

Longest bridge in Arkansas at 1.6 miles long.

Greg with his 1200 GS.  Nice bike!

Diagnosed

I was recently approached at work by a co-worker whose daughter had just been diagnosed with RA.  She is 20 and they have already been to a few visits with a local rheumatologist.  The meds are helping some but she is still terribly depressed over it and feels her life is over.  I remember feeling that very same thing after my diagnosis 9+ years ago.  She asked if I would be willing to speak with her daughter and I have corresponded by email with her.  I wished that the rheumatologist would go over this with new patients, sort of like an introduction to life with RA for all new patients.  It wouldn't have to be a long meeting but it would also give new patients a chance to talk with other new patients and let them know they aren't in this alone.  Below is a part of one email I sent her.

It's a scary time right after your diagnosis, you have many unanswered questions and many doubts about your future. It's good the medicine is working, give it time. What works for one person may not work for you so don't worry if you have to change meds, this is pretty common.  It takes about 6 months to see the full effects after you start or change meds.

This will probably be one of the hardest adjustments for you to make at your age … you cannot care what anyone else thinks. You have to take care of yourself and get by however you can. Use all resources you can find to learn all you can about RA. No one else is going to take care of you, you are going to be your own best advocate for your long term health care. At first I tried to keep my RA a secret from everyone but soon saw it as an opportunity to educate others. Most people are receptive to learning, they just don't know anything about RA. I know I didn't before my diagnosis.

It's important that you understand your life is not over. I thought that at first also. Yes, your life will change but you have to learn to change with it. You will soon learn when you can push yourself and get away with it and when you just need some down time to rest. The worst thing for me (most days) is the fatigue.  I don't ever feel "rested" after 7, 8, even 10 hours of sleep. Every day I wake up, I am just as exhausted as I was when I went to bed.  It has been 9+ years since I was diagnosed and I still work full time, ride a dirt bike and an adventure bike and work out when I can. Don't ever give up!

Our winter sucks this year.  Instead of our normal 50-60 degree days, we have been hammered with 20-40 degree days with rain, sleet and snow going back to four days before Christmas.  I have only rode one time since December 21st and that was just this past Friday night to work.  It was 70 Friday with the over night temp just dropping to 55 so I took advantage of it and rode an extra 45 miles on the way home Saturday morning.  Not what I like to ride but it felt good to be back on the bike even for a short ride.

A Quickie

Living with RA severely limits my seat time on my bikes.  It had been 3 weeks since I had been out but Monday the mercury rose to a nice, balmy 52 degrees.  I had been good the previous three weeks, had trimmed up all of the trees on our three acres, put new speakers in my truck (sounds 1000% better now) and had installed my taller windshield on my KLR.  Monday afternoon was mine to ride finally.  

It would be a short ride, 52 degrees at 55-75 mph impacts my RA pretty quickly but just rolling out of the drive way felt good.  I aimed the front end south and immediately felt better just rolling toward the mountains.  I had no place to go today, just out riding.  It's not always about the destination, it's about the journey and I soon found myself winding around a narrow, single lane dirt road and came to a dead end ... except for the tracks that followed the power lines over a small hill.  I popped up over the hill and was standing on the pegs cruising slowly down hill when I came to a river.  This is where the trail ended and as I start to turn to ride back out, I spot a make shift shack to my left with two BIG guys stepping outside looking at me.  I don't know what they were doing (have my suspicions) but I wasn't waiting around to shake their hands and exchange pleasantries.  I enjoy meeting people and talking with them on my rides but these two didn't look like the friendly type.  I quickly rode back up to the dirt road and lit the 650 up.  Later I found some more of the abandoned Midland Valley Railroad bed and another railroad bridge location.  It was a short 90 mile ride but it did me good ... except for the part about half anticipating being shot at.

I am going to finish loading the tree limbs up and haul them off, then taking three of my guns to the range this afternoon to shoot some.  I just put a laser sight on one of my guns and am anxious to get it sighted in.