Monday, June 28, 2010

Learning From Past Experience

We all learn from each others experiences ... good or bad.  So why can I not learn from my own experiences.  I know better, the past has proven my point time after time, but I still continue to push myself way past my tolerable pain barrier at work and at play.  

Even though everyone in the pressroom knows that I have RA, I work as if I have nothing wrong with me.  I outwork 3 out of 4 healthy people, but at the end of the day, I can barely out to my truck in the parking lot as they are whizzing by me on their way out.  I am not out to prove that I can work harder than any healthy person, that is just the work ethic that I picked up from my dad.  One of the things that he told me that has stuck with me is, "If a job is worth doing, it's worth doing right the first time".  I still believe that today.  There are many shortcuts I could take on my job, but I prefer to do it the right way.

It was a bad four days at work this last week.  Paper breaks that made me get on my knees and back up numerous times as well as climbing stairs and ladders to web the press back up. Two of the days I hurt so bad, I could barely walk to the house after pulling in the driveway.  Donna and I both have physically demanding and stressful jobs, we both work 12 hour shifts that are hard on both of us.  I run a 9 million dollar printing press, Donna is a nurse in ICU.  If I screw up, I can get a few days off for potentially damaging their new state of the art press (days off have already been given to other press operators I work with).  If Donna screws up, she can potentially kill someone.  Ok, she definitely has more stress than I do, I'm not winning that one.  
I am meeting Daryl in the morning and we are putting in an easy 100 mile ride before it gets too hot.  Randall, Daryl and I all have our problems as we are getting older.  We have all broken more than our share of bones, Randall has survived colon cancer, but now the heat gets too him.  I have RA, cold and damp weather, as well as rugged terrain bother me.  Daryl suffers from vertigo, as well as having survived a broken back, and a broken neck (different crashes on his bike) and the heat effects him as well.  When we were younger, nothing could get in our way of riding the roughest trails imaginable.  We may not ride like we used to, but still are best friends and still on a bike.  A couple of years ago, I rode with Randall across a rough trail that I had not been on in years.  It dawned on me just before I got to the end of that trail, that was where we rode together for the first time over 30 years ago.  Pretty cool, not only are we still best friends, we are still riding together and on some of the same trails.  

Monday, June 21, 2010

Maintenance Project

After switching to Humira 10 days ago, I am feeling better. I still take five 2.5mg Methrotrexate weekly as well as two 1mg Folic Acid daily in addition to the HUmira. I am still very stiff in the morning until I get a hot shower and move around a little bit. At work, I am feeling better with the switch as well. The only thing I noticed that it has not helped with is getting down on my knees (for the bottom 2 print decks on the press) and even worse is trying to get back up out of the floor. Big time pain plus I look about as graceful as a rhinoceros on roller skates. Still have some mild swelling, but overall my fatigue is better. I am very pleased with the results so far, but I secretly hope that I continue to see improvement. If I do continue to get better, Randall and I have some wild rides that we are going to attempt this fall.

One ride that we are looking at doing, whether I get better or not, is we are going to have Race drop us off around Tyler, Texas with our bikes, backpacks and duffle bags strapped to the bikes. We can ride from Texas, through Oklahoma, back into Arkansas (mostly all on dirt roads and trails) stopping to spend the night somewhere around Broken Bow, Oklahoma or DeQueen, Arkansas. Then head out the next morning and ride into the Ouachita National Forrest and then head on home. This would be somewhere around 330 miles for the 2 days, I could make that ride right now.

I am doing some much needed maintenance on the KTM this week on my days off, so I am not going to ride this week. But my bike should be happy with me, new bearings in the swingarm, a new heim joint bearing in the rear shock, tearing the front end off and greasing the steering head bearings, a new shift shaft seal and redoing some electrical wiring. After all of that, throw in some fresh oil and filters and a clean air filter and I will have a happy bike for a while.

An additional note: After working on my bike most of the day today, my hands and wrists hurt from hammering bearings out, then new ones back in. I cut my index finger on my left hand stripping wire back. Also, the constant use of a ratchet and socket today has left my wrists feeling hammered . It is discouraging that I can't even work on my bike without hurting. I am going to get cleaned up, apply some Voltaren Gel to my hands and wrists, kick back and watch a movie. After all, I may be hurting, but I'm smiling inside ... I got a big ass maintenance list taken care of today!

Tuesday, June 15, 2010

Free Ride

Something really strange has happened since switching from Orencia to Humira last week.  I am feeling better already.  I know deep down that I can not be feeling better from just one injection, and that has me asking some questions.  Is this just a temporary reprieve from my RA pain that would be occurring regardless of what medicine I was taking, and if that is the case, am I going to continue to hurt on the Humira like I did while taking Orencia?  I am not overly concerned about it at this point, after all I have been hurting with very little help from the meds for over a year now.  I am just enjoying the free ride while I have it.  I am not pain free by any means, but my pain level has come down considerably.  Also at work last week, I didn't hurt quite as bad as I have been hurting.
I went on a 203 mile ride with Randall today.  I was feeling great until we hit a place I shall affectionately call the rock farm.  It was 6.8 miles long and it was literally nothing but rock on top of rock.  I kept up with Randall for the first couple of miles but soon, my hands hurt so bad, I let him go and rode the section at a slower pace trying to reduce vibration and shock to my hands. After that, we rode to Three Sticks, Oklahoma.  It's ok, I had never heard of it either.  Not much there except a monument.  We read the plaque on the monument and still aren't sure why it is there.  Got hooked up on some ridiculously fast fire road, see the photo of the trees growing out over the road ... 60+ mph, then later found two iron truss bridges for my other blog.  Awesome day even throwing in riding the rock farm.
I am hurting mildly now, hands, feet and knees mostly.  I am anxiously awaiting my next injection of Humira next week.  Lana gave me a tip for numbing the injection site briefly before the injection.  

Wednesday, June 9, 2010

Now At The Plate... Humira

I have not felt very good over the last couple of weeks, my RA pain has remained high. That has brought me to a new chapter in my fight against RA ... Humira. I took my first Humira injection at the doctors office this afternoon. It hurt like a big dawg! The good news is, it will just be one injection every other week, so if it helps me, I will be fine with the injections. I am hoping that I will feel good again by fall. I would love to feel good enough to do a 300 mile ride this fall with Randall, Race and Darel.

Even though I have been hurting, I have remained happy inside. Happiness is a choice, not a condition. There are many things that make me happy, from a simple hi and smile from a stranger to expensive, self indulgent toys (usually motorcycle related for me). I'm often happiest amid chaos* at work or home, not because I love chaos, but because I choose to not let it win. Chaos keeps my mind focused on a real problem and away from my everyday pain that I live with.

A partial list of what makes me happy would include:
• Getting to spend time with my daughter.
• A call from an old friend.
• Going to the beach with Donna. 

• A thunderstorm coming in.
• Coming home to be greeted/attacked by our dogs.
• Riding/working on my motorcycle.
• Cranking some rock or blues up til the windows in the house rattle.
• Any day that my RA pain eases up.

*Footnote: Every time I hear the word chaos, I think of Get Smart. My dad and I loved watching that show.

Sunday, June 6, 2010

Time For Change

I am scheduled for another Orencia infusion this coming Wednesday afternoon.  I feel that I have given Orencia a fair chance, 10 infusions, and I am not doing any better.  As scary as it can be switching medicines, its time for me to try something else.  I am disappointed that the Orencia has not worked for me like it does others.  I liked not having to give myself injections and the once a month schedule as well.  However, if this is as good as it gets, just shoot me now because this is no way to live.  I have hurt so badly at work the last two weeks, that I would literally come home and go to bed.  The dogs don't understand why I don't want to play with them when I come home from work.  My wife (an RN in ICU) sees me struggle just to walk, sit or stand, but I don't think she even fully grasps how intense the pain is at times.  I expect my next weapon will be Humira, I will update you after I see my rheumatologist Wednesday.  

By the way, in an earlier post, I told you about being allergic to bee and wasp stings. This is today, two full weeks after being stung.  It is still tender if pushed directly in the center.

I got out this morning and took my bike for a nice 60+ mile cruise around town.  I left the house early and headed over to a lock and dam on the the Arkansas river about 8 miles from our house.  I watched some barge traffic on the river before heading on with my ride.    I rode mostly dirt roads on the outer edge of town ... it's funny to see how many people were staring at me.  Then it dawned on me, they aren't use to seeing riders with leathers, MX boots, chest protector, etc coming through town.  It was a nice change of pace this morning, not having to load up and drive 30 minutes to ride.
I didn't really feel like riding today, but I made myself get out this morning, and enjoyed myself once I got about as far as ... oh ...our mailbox.  I have been talking with Randall quite a bit about this lately.  I am worse than I was two years ago, even this time last year I was still riding quite a bit of single track trail.  I am going  to try to ride every week while I am still able to ride.  I can't imagine not being able to ride, but who knows what the future may bring.  I would hate to look back two or three years from now and think, why didn't I get out and ride while I still could?