Sunday, December 30, 2012

Winter ... ugh

It has been an unusual year to say the least.  We had almost no winter followed by the mildest spring I can remember in a long while, we did not have a single tornado get close to us ... until December 19th.  It touched down a few miles east of us but we lost numerous shingles from the front (west) side of our roof.  We got it repaired on the 21st, just three days before rain, ice and snow hit us.  The cold and damp conditions have impacted my body with above normal to intense pain over the past two weeks.  I hate winters now, with the exception of going to work, I stay inside - often in bed or under my electric throw in the recliner.  The cold weather turns me into a prisoner inside my own home.  It's no secret that I would rather be outside but I have learned to accept it and take the down time to recharge myself for better days to come. 

I feel confused about how the Humira is doing.  It does well for a while then I have periods where I don't do so well with it.  I have decided to eat better starting January 1st and document my year and see if there is any correlation between eating the right/wrong foods and exercise with my treatment.  If it is me, I can correct that.  If it proves it does not make a difference, I will talk to my rheumatologist about pursuing a different treatment.  I hate changing meds but I also hate hurting, especially if there is something that may work better for me.

I wish everyone a safe and happy new year ... and one filled with many pain free days!

btw, we all need to laugh.  Couldn't resist throwing this on this post.

Sunday, December 16, 2012

A Hole In My Heart

I can't imagine the pain the parents, siblings and friends are going through in Newton, Connecticut.  I do know this, anyone who is a parent has a hole in their heart, me included.  If I were a policeman or paramedic and had been called to the school that day, that would be the day I quit a good job ... I'm thankful for stronger men and women than I am.  What hero's the teachers and principal are that stood up to pure evil that day giving their life to protect the students. 
I don't claim to have the answers, it seems like (as in most tragedies) there were signs and safeguards ignored or bypassed.  I think it would be a mistake to open the school back up and expect everyone, students, staff and parents, to walk back into the same building as if nothing had happened. 
I have owned guns since I was 13, I currently own 2 rifles and 3 hand guns and have never, ever one time even entertained the thought of shooting someone.  Just 6 weeks ago, one night while I was at work, my wife was home alone.  At 3am someone was trying to break into our house.  She scared them off by turning the hallway light on, not realizing what was going on at first.  The storm door closed and she heard foot steps running away.  She called 911 and  ... 17 minutes later a police car showed up.  A lot can happen in 17 minutes.
I didn't mean to turn this post into a rant.  I'm hurting over it and just rambling now so I will close this with thoughts and prayers going out to the whole community.

Wednesday, December 12, 2012

Rough Times

It has been a crazy 3 weeks since my last post.  I had not forgotten about my blog, just had too much going on.  First, my wife was sick with the stomach flu so I did my best to take care of her while still trying to avoid contact (impossible to do) due to my depleted immune system.  Then her grandfather passed away and between the arrangements, visitation and the funeral that was a full week.  Then 3 days after his funeral, I finally succumbed to the stomach flu.  After 2 full days of it, I was feeling better but terribly weak.  I went back to work last Wednesday night and managed to survive my normal 4 day rotation. 

Through all of this, my RA was doing quite well ... then late Sunday night a cold front blew in and well, you know what that does to RA.  The cold has made my RA a bit cranky but not too bad.  I now have a new item to add to my bucket list.  I received a confirmation from my rheumatologist Monday morning that I had better prepare myself for a hip replacement.  As soon as he said that, before I could even say anything, he quickly added that I would not have to give up riding ... only temporarily (4-6 months) while healing.  I guess you see why I like my doc so much.  It's nice having a doc that rides instead of one telling you to get rid of those contraptions.  Anyway, he said it's nothing pressing, but will most likely come to that in the next few years.  He has me scheduled for a TB blood test and right hip x-rays next visit.  I also took the Our Hands Can book to show him on this visit.  I told him that I was honored to have been included in the project and that I was on page 24.  He was impressed and sat there reading through several pages of it in the middle of my exam.  

I have done a few shorter rides, logging nearly 1500 miles since the third week in October.  I recently rode out to a bridge that was built in 1904.  It was a solid bridge but the real story was the trip out there this time.  I took off with the approximate GPS coordinates loaded up. Once I hit the dirt, I turn on my GPS.  As I am going farther I realize it looks like I am riding on private land, but my GPS still indicates it is the road the bridge is on. I keep riding and soon I'm crossing cattle guards in open, empty fields.  Out in the middle of these fields, I find an old concrete bridge that has not been logged on any bridge report that I can find so far.  I continue on and start climbing a steep, rocky uphill.  Soon I'm pulling up into the back end of a rock quarry the length of a football field long and dug down about 20 feet. At first I hesitate but decide to ride further into the quarry, then I finally see someone ... 2 drunk Mexicans (you can't make stuff like this up!). Nice guys, they understood me and told me where I needed to be, the road 50 feet west of where I was. I am assuming this was an old county road bed at one time ... I don't know.
Almost surreal how green the field is (have no idea what it is) in December.
San Bois bridge, built in 1904.
Unnamed concrete bridge that I found riding in the middle of nowhere.
Yes, that is a good sized whole in the bridge deck.

Sunday, November 18, 2012

A Good Old Fashioned Ass Kickin'

RA changes us, sometimes for better, sometimes for worse.  It depends on what we have inside of us that determines which it shall be.  I never saw myself as a strong or successful person until RA came along.  In my pre RA days I never had to fight to maintain any degree of normalcy, it brings out who you really are.  It also shows us that what we once thought was important, often times, really doesn't mean that much now.  It is hard living trapped inside a body that now is exhausted all day, every day and refuses to bend causing even the smallest movement to often be met with excruciating pain.   It doesn't make sense how you can break an ankle and head to the ER ... no big deal.  However, walking through the kitchen and hitting a knuckle on the counter top can drop you to your knees with pain. Real, honest to goodness, intense pain ... not drama queen, I want some attention type pain.  Welcome to my life.

I suppose I needed it, I had almost forgotten what an intense flare up felt like.  Last week we had a cold front blow through, the one I blogged about riding after work just before it hit.  It seized my joints up and provided me with a level of pain I haven't felt in a good while.  My right hand swelled up (including my wrist) so that I could not close it to make a fist.  It literally felt like I had a broken bone in the top of my hand connecting to my wrist.  I could only walk straight legged (you know, the Frankenstein walk) Monday and most of Tuesday.  I couldn't even hold a cup with my right hand, since I am right handed and do everything with said hand, drinking coffee with my left hand provided a bit of a thrill at first.  The hot tub only provided about 30% of the relief it normally does, Voltaren Gel didn't do much (it did keep the dogs away though, they don't like the smell), no help from Tylenol Arthritis or Ibuprofen.  Nope, I had to take care of this flare up the old fashioned way ... wait it out.

Also extreme fatigue nailed me.  I slept 14 hours Monday and 13.5 hours Tuesday.  Even the dogs were looking at me as if they were saying, "holy cow, get up.  Lets play ball, take us to town, something ... anything besides going back to bed!"  It has been a few years since I have slept those kind of hours.  I am used to mild flares and will occasionally sleep 10-11 hours every now and then. 

Yep, to summarize, I had my ass handed to me by RA last week.

But you know me ... I got off work Saturday morning, slept 4 hours and climbed on my bike for a FURA ride (stole that one from Mary).  I am not completely over the flare and it hurt considerably climbing on and off of the tall seated demon, but the rest of the 115 mile ride was great.  A new personal best for me ... 87 mph (140 kph) on a dirt road.  Besides, it was 67 degrees today and I'm too old to waste fun days!
Headed south Saturday riding forest roads to the top of the taller mountain ahead.
I like riding through small communities, this one still has a water tower.
I would never get tired of living here looking at this every morning!
You know me ... I love iron truss bridges.

Monday, November 12, 2012

Tofacitinib

There is a new drug for the treatment of moderate to severe RA.  Tofacitinib was approved by the FDA this past week ahead of schedule.  Tofacitinib provides a new treatment option for the debilitating disease of RA who have had a poor response to methotrexate, Badrul Chowdhury, MD, PhD, director of the Division of Pulmonary, Allergy, and Rheumatology Products in the FDA's Center for Drug Evaluation and Research, said in a statement.  The most common adverse reactions in clinical trials were upper respiratory tract infections, headache, diarrhea, and inflammation of the nasal passage and the upper part of the pharynx.  In clinical trials, tofacitinib was associated with an increased risk for serious infections, including opportunistic infections, tuberculosis, cancers, and lymphoma. The drug carries a boxed warning regarding these safety risks, the FDA said.  The drug is also associated with increases in cholesterol and liver enzyme test results and decreases in blood counts.  I am currently doing well with the MTX and Humira combo but I sincerely hope this helps those who have trouble with or simply can not take methotrexate.

I have been hammering out miles on my bike over the past 4 weeks taking advantage of our gorgeous fall weather.  I have put in 1100 miles, not including today and tomorrows rides.  We had a cold front push through yesterday morning.  My last night to work last week was Saturday night and I got off at 7am yesterday morning.  The temp at 7am was 74 and although I was tired, I came home after working a 12 hour shift and put on my gear and headed out for a quick ride before the cold weather moved in.  It felt great but the 30-40 mph winds were whipping me like a rented mule.  It can be a little unnerving to come into a turn at 60 mph just as a wind gust pushes you over a couple of feet while leaning the bike through the turn.  I only put in 45 miles before the lightening and rain moved in, but it was a nice relaxing ride with almost no traffic out early Sunday morning.

On a ride last week, I was headed out to the west and had been wanting to visit the Skullyville County Jail, so I loaded the coordinates in my gps and headed out.  I was amazed that it is in as good shape still as it is.  The jail was added to the National Historic Register in April, 1980.  It replaced the original jail in 1888 (original jail was built in the 1850's) at the same location and the walls are rock, 2 feet thick.  It has one door, heavy iron bar, and one tiny window with iron bars.  While I was stopped there, an older gentleman stopped to see if I needed help and I told him I was just taking some photos of the old jail.  He told me that he wished they would open it up so you could actually get inside ... "there's a lot of history in there", he said.  He told me one of the stories passed down was that Jesse James had been held overnight by Pinkerton agents in the original jail here.  Not attempting to glamorize Jesse by any means, but it was kind of cool thinking you were walking around where Jesse did in years gone by.

Monday, November 5, 2012

Doubtful

Always looks better in person than in a photo.
Swimming hole at Redding.
Oklahoma road, half gravel, half asphalt ... I call them graphalt roads.
Considering I have been off of my MTX and Humira for 3 weeks due to a double infection, I have been doing remarkably well.  My hips and left hand have been hurting quite a bit more than normal, far from pain free but not bad.  I am also noticeably more stiff after just sitting for a few minutes, I resumed my normal medical routine last week so I am waiting for the meds to help with this.  I also got my flu shot last week, I am a firm believer in the flu shot now. 

I have been pushing myself pretty hard due to the near perfect weather over the last 2 weeks.  In the last 3 weeks, I have logged 930 miles on my bike plus I am heading out Tuesday morning after voting.  I hate the time change that has it getting dark at 5pm now!  The daylight is nice, but at this time of year, the warmth of the sun is more important.  I was out last Tuesday in a riding jersey and my light riding jacket and was a little warm in the middle of the afternoon.  The sun ducked down behind the mountains and within minutes I was shivering and still 45 miles form home.   Needless to say a hot shower was the first thing I did when I got home. 

I also got to spend a day with my parents last week.  I talk to them a couple of times a week, try to get up to see them every 2-3 weeks, but this was different.  I drove up north and picked them up then took them for a drive over to the Ozark National Forest with all of the fall colors out.  I took them to Oark to eat, then on to the swinging bridge.  Mom almost ran to it saying, "it's been ages since I've walked across a swinging bridge".  My dad worked at the canning factory at Oark before being drafted and going to Korea.  It was really nice seeing them remember days gone by and enjoy themselves.  


I am seriously considering getting a KTM950 Adventure now.  My wife is no help in the matter, she said "go get it".  The only thing holding me up is the weight (additional 5o lbs) and the seat height is 1/2" taller than my 650.  I have lost a lot of strength after living with RA for 9 years and well ... I have to tip toe to touch the ground with my 650 now.  I want the extra power and superior suspension and while I could manage the 950 with no problems right now, I don't know about next year or 2 years down the road.  I hate RA, it once again has me doubting myself. 
Found an abandoned bridge I was looking for.
Approaching it, I thought I could ride across it.
That soon changed as you can see what kind of shape it was
Mom on the swinging bridge.









































Wednesday, October 17, 2012

In A Word ... GREAT

Living with rheumatoid arthritis can feel like a crap shoot sometimes.  You feel good today but you may struggle to get out of bed and get to the living room tomorrow morning.  It is something we deal  with but deep down, no matter what level of acceptance you have reached, we all hate it.  I can't explain why my pain level is low right now, I am just enjoying the days as long as they will last.  I even changed a tire on my bike tonight after getting in from today's ride.  This usually hurts my hands badly from prying on the tire tools stretching the tires off and onto the rim.  Not this time, hasn't bothered them at all. 
I did not get to ride the last two weeks, the first week was due to some serious RA pain going on at the time then last week I had a sinus and ear infection.  This week I made up for it.  I rode with Greg Monday.  His BMW1200GS was all shiny with the stock tires so we kept to mostly asphalt.  We rode 150 miles but I did take him for a little bit of exploring that paid off.  I have rode by this particular dirt road many times but slowed and turned down it to see what was down that way.  After a couple of miles of snaking around a narrow twisty dirt road with lots of hills, and trees hanging over the road forming a tree tunnel, we were face to face with a massive train bridge.  The bikes are dwarfed in the photo below.  Greg had a good time and has engine guards and knobby tires ordered.  Next time I will drag him over some good stuff.
Tuesday, Randall and I headed out at the crack of nine.  Randall was riding his KTM 950 Adventure that he had just picked up yesterday.  In a word, Holy Crap!  Sorry, that was two words wasn't it?  We rode from the house to Oark and turned around to head back home for 187 miles round trip.  After eating, we walk out and it was about the coolest thing I have seen in a while.  There were 15 bikes all lined up on the side of the cafe where we had parked.  We talked with a group of 5 from Minnesota who were loving the riding we have here.  Then Randall says, "I want you to ride this".  No... I'd better not, I replied.  "No, ride it like it was yours" he fires back.  I rode it for the next 12 miles on Highway 215 which is narrow and twisty with a bluff on one side and the river on the other.  Once on 215, after leaving the cafe, I grabbed enough throttle to climb to a comfortable cruising speed while adjusting to the bike.  I look down and I am running 69 mph ...  it is so smooth and the power so linear, I thought I was running low 50's.  A big smile came across my face ... okay, lets see what she's got once I get through this corner.  Coming out of the apex of the turn I pull the throttle hard and the acceleration was incredible!  It jumped, literally on the digital speedometer, from 45 to 58 in a second.  About 3-4 seconds later I was at 87 mph.  I have got to get me one of these!!  I pulled in at the junction of highway 215 and 23 to trade bikes and was laughing hard as Randall pulled up on my KLR.  He grinned big and said "yeah, when it goes bad, it's going to be REAL bad".
My week has been a good one, I have lost 4 pounds, rode 335 miles in two days in two different national forests and although not totally pain free, haven't felt too bad for all of it.
Massive train bridge on the edge of the forest.
Bikes under the bridge.
Randall's 950 after he let me hammer it for a few miles.
To say it was a nice day to ride is an understatement.  Oark Cafe Tuesday afternoon.
Highway 215 to Oark.
Fall colors just starting to hit the Ozark National Forest.  The Ouchita National Forest will be a couple of weeks yet on colors.
Highway215 and 23 junction.
I want to own land with my own abandoned bridge on it some day!

Tuesday, October 9, 2012

Figures ...

My RA has decided to behave over the last week so I was looking forward to my 4 days off this week.  Then on my final night at work last week, I started noticing a light headed feeling when I would turn my head or look up.  Not good, later toward the end of my shift I felt pressure building up in my forehead and cheeks.  Yep, going to be a wash on riding this weekend.  Went to the doctor first thing Monday and as I suspected, a sinus and ear infection.  Then I went on to my rheumatologist for some scheduled blood work, ah two doctor visits in one day.  Still my RA is hardly noticeable ... I really need to be riding, the weather is better than perfect today, but turning your head and becoming light headed is not a good combination for being on a motorcycle.  It's hard work being responsible!
I had just sat down at my computer yesterday afternoon when Donna hollered, "you have a visitor".  As I approached the front door, I was immediately jealous, the guy was riding a BMW 1200GS.  I opened the door and he took his helmet off and it was Greg.  I used to work with Greg, then he went to Iraq as a civilian contractor 10 years ago.  He just got back into the states for good this time and had bought the BMW yesterday afternoon.  We talked for two hours, have a ride planned for next Tuesday and are getting some of the old co-workers together to go out to eat.  We have had a lot of good times with Greg and now I look forward to many more.  Good to have him and Debbie back home safely.
Greg and his new BMW 1200GS, just in from Iraq.
I have been pursuing a BMW F800GS hot and heavy over the past week and finally got the real story from the owner.  He took it with him to Italy, can not get it registered over there and must sell it back here in the states where he bought it.  Although it is a good clean bike at a VERY good price, I just don't feel like dealing with shipping a bike back here and getting it through customs then hoping the guy has  all of the paper work needed to get it transferred to my name and tagged.  Just don't need the aggravation. 
BMW 800 that I have given up on for now.

Monday, October 1, 2012

Twenty Five Years Ago

Twenty five years ago life was much simpler.  The year was 1987, I was 29 and having the time of my life racing motorcycles.  I had no computer, internet or cell phone but somehow I made it just fine.  Today it seems that I am tethered to my phone and as soon as it dings announcing a new text or email, I have to see what someone has sent. 
I was also completely healthy and, with the exception of a broken bone, I never went to the doctor ... never.  I had accumulated enough points through wins and consistent finishes that I was advancing to the next class.  Two months later, in December 1987, I had a serious crash while racing a European Qualifier.  I cracked three ribs, suffered my second concussion, broke my right collar bone at the neck and separated my right shoulder.  All healed well except for my collar bone.  It was eight months before I could ride without feeling my collar bone, the handlebars transmit jarring and impacts through your arms, I would feel nauseous from the pain.  Anyone who has had a broken bone knows the feeling of bumping it as the bone is knitting itself back together, you get a sick feeling in the pit of your stomach ... as well as the pain. 
I was also not familiar with RA despite already having OA in my knees from football and racing.  I had always planned on going back to racing in the senior class after our daughter got older, but never saw RA entering the picture ... we never do.  I hold no grudge or remorse now, just enjoy a much tamer style of dirt riding.  At least I'm still able to ride most days.
What brought this post on was a visit from Mike Smith a couple of weeks ago.  We sat out on the patio and talked about everything from family and adventure riding to camping trips and old racing memories.  Man, some of the stuff we did ... we could fill a blog up from riding stories.  He also brought some old photos with him, so here is a glimpse of days gone by.  

Me, healthy, at age 29
Mike Smith 1986
Start at an Arkansas Hare Scrambles event in 87.  Mike Smith is the rider at the left and I am 3rd from the left in red riding pants.  Once again Mike and get a good start.
Me in 1987 racing at Tulsa
Arkansas Hare Scrambles event 1986.  Mike and I are battling for the lead at the left side of the photo.
Me racing at an enduro, possibly Stillwater, aboard a Husky 430.

Tuesday, September 25, 2012

Chronic Ramblings

When I first started this blog, my main motivation was that maybe I could help inspire one or two people to pursue what they love doing in spite of living with RA.  However it is I who have been inspired by so many emails and messages from both followers and drive by readers. 
It is not easy accepting that you have a chronic disease, especially if it means having to give up something you love doing. We all have different degrees of damage which may allow or prevent us from doing what someone else does.  I have never felt cheated by not being able to do what someone else with RA can do.  I accept my limitations as the new me.  There are many distractions from the pain but the bottom line is the more your brain is sucked into an activity, the less pain you are going to notice.   I have given up several things but refuse to give in on my motorcycles.  It also seems that there are many doctors out there who know how to treat the disease, but few know how to treat the patient.  I am fortunate that I found a good rheumatologist ( my first one was not so good) who I am still with today.  
I have felt good for the past 12 days but over did it yesterday by doing all of the yard work.  This morning I pushed myself to go on a short 80 mile ride and am so glad I did.  I found some more of the old Midland Valley Railroad and actually rode a little bit of the old train bed.  I also found 2 old bridge crossings from the railroad.  As a bonus I didn't see a single snake on todays ride.  I was certainly watching for them as I went down under one of the bridges, with tall grass and water, it looked like a snake haven.   
 I rode part of the old Midland Valley Railroad bed today
  Abandoned bridge from the MVR

Tuesday, September 18, 2012

Today I Owned RA

I woke to semi stiff, achy joints this morning that soon eased up after a quick splash in the hot tub.  I did a quick 20 minute workout with weights, had a toast and a protein shake and the rest of the day belonged to my motorcycle.  It has been neglected the past 13 days so I checked the tire pressure, oil and cleaned and re-oiled the air filter.  I plugged in the GPS and Spot locator, I always ride with my Spot when I don't know where I am riding for the day, and headed out ... that way.  I didn't have any particular place in mind to ride today, these rides are often the best ones.  There was a chill in the air today, a nice cool 62 when I hit the road, so I had my light riding jacket on over my shoulder pads today. 
Riding along the Arkansas River this morning, I rode past a water moccasin headed right down the center of the dirt road.  As I was passing him, he lunged at my bike with his mouth wide open.  First one I have seen all year, I hate them ... pure evil.   I stopped at the Spiro lock and dam on the Arkansas River.  There was a large barge headed into the lock so I rode up to the tower to get a couple of pictures.  I have great respect for the barge operators on the rivers.  I started talking with one of the guys that works the lock.  As I was taking a couple of pictures once the barges started out of the lock, he said "come on inside, I can get you some better pictures".  I was literally 3 feet away from the barges and tug as it inched its way cautiously through the lock.   Super nice guy, we must have talked for 30 minutes or longer.
I like riding the back dirt roads as much as I can, but had to ride some asphalt today.   Logged 164 miles, stopped by a few bridges along the ride, had one of the best cheeseburgers you can ask for.  All in all, much better than last week when my RA took me for a ride ... today I owned my RA.
This is the old rail bed of the Midland Valley railroad.