The Little Things

After 2 weeks off at Christmas/New Years, I went back to work on the 3rd of January.  Since then, I have had 2 days off, I have worked 22 of the last 24 days.  This has my RA grumbling a bit more than normal but I will survive.  As I typed that I immediately felt a strange alliance with Gloria Gaynor and her song from the late 70's.  Odd how a simple word or two can pull up something that you have not thought about in decades.  Now I can't get that crazy song out of my head.

Sunday was a beautiful warm day but I was so tired from work that I wasn't up to a full day of riding.  I just decided to do a short urban ride instead.  I didn't even put my boots, riding pants and knee pads on, just opted for jeans and my work boots.  I did grab my heavy, black Fieldsheer jacket with pads built into it (weighs 11 pounds) and my Shoei DS helmet.  I am really starting to like this helmet the more I wear it now.  It looks like a dirt helmet but has a face shield that raises and lowers.  It is unbelievably quieter than a regular dirt helmet with goggles.  Anyway, while out exploring some dirt roads on the back side of the small town I live in, I turned down a road I have been by many times but never knew where it went.  As I was riding down the road, I was soon greeted by a winding hill.  I rode by a house where there was the cutest little girl, not more than 3 or 4 years old with long blond hair, riding a brand new electric ATV by herself in the front yard.  She grinned big and did a dainty little girl wave at me.  I waved back as I rode past her house and proceeded toward the hill.  Turns out there was nothing much up that way so, after several miles, I turned around and headed back out the way I came in.  As I was dropping off of the hill I could see she was still riding in the front yard.  I got closer and she stopped and again did her dainty little wave at me.  This time however after getting closer, I could see that she had put on a tiny black jacket and her bicycle helmet.  I couldn't help but grin big underneath my helmet while waving back at her again.  I don't know if I inspired her to put them on or if her parents, no one was outside with her (which really bothered me), made her put them on.  She reminded me so much of my daughter at that age ... somedays it's just the little things in to make you smile.

All In All, A Good Week

I have some good news since my last post.  My rheumatologist worked me in an emergency visit this past Wednesday due to my insurance running out.  This way I would be good for 3 to 4 months before getting in to see a new one.  I had found a new rheumatologist, a good one too rated 5 stars (just like my current one), located 100 miles north of where we live.  When I arrived for my office visit Wednesday morning, it turns out that my insurance company and the doctors network came to an agreement just the day before.  I will not have to go through changing doctors and driving 200 miles every time I need to see a doc after all.  I was greatly relieved to hear that news.

I have been doing ok lately despite noticing a decrease in flexibility over the past few months.  It hurts to realize you are slipping backwards but all I can do is enjoy everyday the best way I can.  Some days this is a day of hard riding, some days it is on the couch watching a movie.  We have had an incredibly mild winter so far.  This afternoon at 6 pm, we are sitting at 67 with the threat of severe storms, large hail and tornadoes into the evening.  I just got back from a short ride on the 650 and it feels like a spring day outside. 

Anyone who has been around off road racing knows the name Husqvarna.  In the 70's and 80's they owned the off road racing world.  Back in the 2 stroke days, Husky's were known for being loud, I think some of them actually made my ears bleed!  I have owned three of them in the past and just two days ago, Husquvarna introduced a retro concept bike.  It's got to be the coolest thing I have seen in years!  Cosmetically, they hit a home run bringing back the 70's white plastic and red/chrome gas tank while utilizing a 650cc 4 stroke single with fuel injection, LED dashboard, a tailight tucked in above the fender but under the seat and a headlight hidden by a number plate.  I would sell my KTM, KLR and my Silverado to get one of these.  I just hope that this bike becomes a reality while I am still able to ride.  

Images from CycleWorld.com

"Thrilled To Have RA"

Isn’t it amazing how the media only picks up the atypical cases of RA to promote. The average person doesn’t know the difference between OA and RA, then sees one of the media's stories or one of the drug commercials for RA and thinks “how lucky those people are to have a treatable disease”.  Kelly at rawarrior.com recently wrote about a lady who was thrilled to have RA instead of lupus.  I don't want to get into a "my disease is worse than your disease" war, but anyone who is "thrilled to have RA" seriously needs to have their head examined.  Of course we are all different and perhaps she has a very mild onset of the disease, if so I'm happy for her but she needs to understand the full effects of RA before opening her mouth to the media. 
I have been very fortunate so far to maintain a somewhat active lifestyle, but I can feel myself slipping over the past two years. I also hurt every damn day, I just push myself to go on and enjoy life. It’s not something that comes natural or easy any more. 

I am looking for a new rheumatologist for the time being.  I have a good rheumatologist, have good insurance so what could possibly be wrong you ask?  In this day of "never take anything for granted", my insurance company tried to push a new contract through while adding a clause that would relieve them from paying the full charges from any specialist.  The network that my rheumatologist is in refused to sign it so therefore, I am without a rheumatologist at the end of this month.  I have talked to both parties and both are pointing the finger at the other.  All I know is, I am the one who is losing out in spite of paying in my healthcare premiums every month.

I have been working on my 650 and have made progress in the 6 weeks that I have owned it.  I went for a short 65 mile ride this afternoon in search of an abandoned railroad bridge.  I found the old railroad bed and a cool arched drainage tunnel underneath the abandoned railroad bed, but it was too muddy and rutted to take the KLR through to get to the bridge.  If I would have got stuck, at 440 pounds, I would still be there trying to pull the big bike out.

To New Adventures in 2012

I have never been one to just sit back and let something run over me.  That being said, living with RA over the past 8 years has provided its ups and downs.  I raise my glass to all who live in rebellion against RA ... to new adventures in 2012!

I took the KLR out Wednesday and put in 160 miles.  It was a chilly day and I paid for it toward the end of the ride but the next day felt fine.  I also discovered, for me, the most amazing cold weather riding accessory there is.  We rode 45 miles and stopped at Blue Mountain Lake.  Randall asked how I was doing and I said good but my hands are cold and hurting.  He said here ... try these gloves.  At first I wasn't going to but my hands tricked my brain into saying okay.  They were MSR Cold Pro gloves, and my hands warmed up and stayed toasty the rest of the day.  We split up at the end of the day, traded gloves back and by the time I had rode the 3 miles back to the truck, my hands were hurting again.  Of course it was sundown and back down in the mid 40's by that time also.  A pair of these gloves are next up on my wish list for riding. I am starting to like the KLR more after yesterdays ride, it has incredible acceleration even though it is still restricted from the factory.  With a quick twist of the wrist you go from 45 to 70 mph in nothing.  I am taking the KLR again tomorrow for a short ride and the KTM out Saturday for another all day ride. 60 degree days in December rock!

Just What The Doctor Ordered

I am completely over my flare now, the stye is 95% gone as well.  I'm just patiently waiting on the next medical problem to come along now. I received an email from a lady in Wisconsin last month asking me about riding with RA.  Here are parts of her letter, "First, I am female & a bit down right now after another flare.  I have 2 bikes in the garage that i've only been tinkering with since md-simmer.  I have been told by MDs to SELL these & that NO ONE with RA can safely ride a 2-wheeled contraption."  This infuriated me, how can a doctor (most of whom have only been trained to treat us, they do not know how it feels to live with a chronic disease) tell us to quit living just because we have RA.  I would like to talk to this doctor, I have logged over 7000 miles over the past two years, mostly off road miles which are a bit more tricky than riding asphalt.  Does he think that I cannot ride safely?  I replied to her and told her how I have adjusted my riding style, how I feel riding and my limitations.  I have not heard back from her, I hope she will take my email to her doctor!

With a break in the cold weather, I had my eye (not the one with the stye in it) on getting out to ride Wednesday morning, provided I felt up to it and the storms didn't roll in when they were predicted early that morning.  My luck held out on both counts and I loaded the KTM and headed for the mountains.  I had to go to work that afternoon so it would be a short 50 or 60 mile ride, but I was not going to waste a 65 degree day in December.  I met Randall at the bottom of Poteau Mountain and we lit the beasts up and headed up the twisty, rocky mountain.  Once over the mountain we hit the woods and I was surprised at how good the bike felt today, somedays you feel like pushing it but it doesn't feel right so you back off a bit.  This was NOT one of those days. In the woods I was slamming through the corners, wheelieing across creeks and, in general, having the time of my life.  Quick note: my new boots are not 100% waterproof and although the outside temperature was 65, my left foot was now closer to a damp 45 degrees.  

We were on our way to Haws Creek to get a cheeseburger when we found that they are destroying one of our favorite trails to get there. They have brought in heavy equipment, cut down trees and are building a wide road to log out the woods on Walker Mountain.  The government fights to ban dirt bikes from riding on National Forrest land, but it is perfectly acceptable to bring in heavy equipment, leave it sitting in the woods leaking diesel and oil directly on the ground, those evil dirt bike riders must be stopped at all costs!

This is about where it started raining on us, not a nice easy slow rain ... oh no.  We rode the next 30 minutes in various intensities of the liquid menace then as we were approaching Haws Creek the road turned back north and there it was.  A bright, full on side to side rainbow against a deep gray (almost black) sky behind it.  It was a perfect picture moment but as some of you may remember, my camera committed suicide on our 2 day ride about 6 weeks ago.  I had my phone with me, even though it has an 8MP camera on it, the quality just isn't there.  

After eating I had to get back home quick, I had rode way past when I needed to and was nearly late for work.  We were pushing 65-75 mph on single lane forest roads coming back, like Randall says, "when it goes bad ... it's going to be real bad".  Logged 85 off road miles before going to work.  The thrill and satisfaction of being on a bike, the disconnection from society, no cell phones or internet distractions, does me so much good.  By the way, my rheumatologist rides ... I'm glad he gets it. 

Finally!!

After a frigid blast moved through, actually it just stopped and hung out for a few days with us, I am feeling better.  As my luck would have it, now that my flare is about 70% gone, I have a stye in my left eye.  It doesn't hurt, itches a little and looks like I was on the wrong end of a bar room altercation.  Other than that, I am actually felling pretty good now.  

So good in fact, I got out to the garage and mounted a new front tire on my KLR yesterday.  I used my handy dandy new ATV jack that I had to buy just for the new scooter.  It is too low to the ground to use a normal dirt bike lift.  It was a struggle and my hands paid for it dearly but I finally got the stiff walled DOT approved knobby tire on the rim.  After I checked the spokes, wheel bearings and brake pads, I put the wheel back on and was amazed at how much better the bike looks.  Once I get the rear knobby on, it will look a little more like a true off road bike.  I have 2 weeks off at Christmas into New Years and I am hopeful we will have at least 2 or 3 days warm enough to ride.  Did you hear that Mike?  You'd better get your happy butt down this way and ride with us ... weather permitting.

Fully Flared

I got in from work tonight at midnight on what should be an ordinary night.  However, living with a chronic disease means that there is no such thing as normal anymore.  What I wouldn't give to be able to wake up and jump out of bed attacking the morning any way I choose to or simply stand up and take off walking after sitting down for more than 15 minutes.  I would love to be able to play basketball again (we still have the goal up and two basketballs in the garage, when I do feel like shooting a few I usually don't feel like chasing the ball down), go for a run around the neighborhood or play golf again. 

Instead I sit here tonight with a full body flare up.  I really have no room to complain, it has been a while since I have experienced one.  I am used to living with the pain but I don't think I will ever adjust to dealing with the fatigue part.  Tonight at work as soon as a roll would splice off, it would take everything I had just to make myself stand up and start walking to the press.  My hips, knees, shoulders, hands and feet are all equally dividing up the abuse while my right ankle does not want to bend and my neck has been cracking and popping. I assume this is my RA multi-tasking.  

I think perhaps the hardest part of living with RA for me has been the fact that I have shut down my emotions in order to survive.  I just bought a new motorcycle 3 weeks ago and I've just not been that excited about it.  For that, I truly hate you RA.

Spring will soon be here bringing warm weather, longer days and some good rides.  I am ready for spring but for now I will just live out my winter hibernation ritual ... work, sleep, work, sleep.

Ramblings Of A Madman

• I hate winter.

• What is wrong with people today, it just seems like there is way too much intolerance and hatred.  There is no such thing as agreeing to disagree in todays world.  If you don't agree with someone, they hate you.

• By my own definition, I guess the statement above makes me intolerant of myself.  After further review, my official stance is that I hate RA which in turn makes me severely dislike winter.  This statement very nearly propels me to politician status.  I just need to develop a drug/alcohol addiction, have an affair and embezzle some money.

• Perhaps not as deep as the creation of Stonehenge yet still I wonder, how can Nickelback be one of the top rated rock bands while being the most disliked band at the same time?

• Why do I live with chronic pain every day yet insist on continuing to work a blue collar job and try to pass myself off as being a normal guy?  The answer is complex and has several answers.  Among them are, I want to be able to support my family, I'm not willing to resort to disability (although there are days it would be nice), I would have an internal conflict if I continued to ride but would not work and I'm sure not giving up riding any time soon and perhaps the most humorous one to some people ... I enjoy working.

While it is painfully obvious that I am not a deep thinker, I have been analyzing what changes/modifications I need to do to my new motorcycle before going to Colorado early next summer.  I have already started by relocating the license plate and removing the rear fender extension, added a rear master cylinder guard, did the air box mod to make it breathe better, replaced the stock handguards with a set of bark busters and some hand protectors.  Started removing the stock graphics.  I have a set of Dunlop 606 tires coming this week, that should help the lack of control issue some.