Tuesday, December 29, 2009

2009 A Year of Ups and Downs

Looking back on 2009, it has been a year of ups and downs for me.  It started off good, with great weather and several rides on my new bike, before we got hit with an ice storm at the end of January.   I started my downturn with RA at about this time also.  Not one to sit around and whine about it, I pushed myself over the next few months.  Working with RA can somedays be challenging at best.  There were days that I would wake up to go back to work feeling as bad as I did after finishing the previous shift the day before.  I survived and most days was able to laugh about it.  September was eventful, I switched to Orencia and started training for running the front end of the printing press that I work on.  Once I learn all of it, it will be easier on me and my RA.  I still hurt everyday, have a minor amount of swelling but the stiffness from sitting very long and the fatigue continue to bother me, but overall I am doing better than before starting on Orencia.  I believe that the Orencia will continue to help me more through the first part of 2010.


Riding was a different story though, I was no longer able to take the punishment of hardcore woods riding.  I reluctantly began my switch from some dual sport rides to all dual sport rides by around April.  I still try to slip in a few miles of hardcore woods each time out, but its mostly atv trails, fire roads, dirt roads and some asphalt now.  I did manage to log just over 1800 miles this year, the most I have rode in several years.  I went through 3 back tires on the 525 this year, and as far as my bike goes, I like it more each time I ride it.  I was a bit intimidated when I first bought it, it had been a while since I had rode anything over a 200.  My 200 puts out 27 hp and weighs in at 231lbs.  My 525 puts out 55-57 hp and weighs 252 lbs.  The acceleration and pure torque of this bike makes riding anywhere fun.  I have had my bike up to 87 mph, and it was not anywhere close to being topped out.  Thats ok because I was.  Next time you're running 85 down interstate, think about opening the door and jumping out.  You'll see why I backed off.


I also expanded my blog into my struggles with RA this year.  It has been a very comforting experience to talk with people who are experiencing the same struggles that I am going through.  The doctors, your friends and family are supportive, but its just not the same as talking with people who have RA.  One of my fellow RAer's posted this a couple of months back, "To get it, you have to have it", very true.  I am thankful for the friendships I have made in the RA blogosphere and hope both my friendships and the RA blogosphere will continue to grow in 2010.





I hope that 2010 will treat all of us good, I don't personally make new years resolutions, but I am going to try to be better to my family and myself this year, and hopefully I will feel good enough to get back in the gym soon.  I hope all of you have a happy and safe new years.  Oh, by the way, if you are sitting around the house with nothing to do on New Years Eve, check out ESPN at 11 pm eastern for Travis Pastrana's record attempt car jump for Red Bull.  Travis will be jumping from Long Beach's Pine Street Pier to a barge that will be anchored in the harbor.

Friday, December 25, 2009

Unusual Christmas


The picture above answers that old question you have always had in the back of your mind: How many Santa's can you get in a phone booth?  Answer: 3

What an unusual Christmas it's been this year.  We have always celebrated Christmas at my parents, my mom's side of the family gets together Christmas eve, then we spend the night with my parents and open presents Christmas morning.  My wife had to work Christmas day and I have to go in the day after Christmas so we had Christmas early this week at my parents, and it just felt empty this year.  We were missing seeing my family for Christmas eve and spending time kicked back with my parents.  Instead we were in a rush, a couple of days before Christmas, to get up to their house (they live 100 miles north of us), take them out to eat, exchange presents then rush back home because Donna had to go to work the next day.  I have missed visiting with friends and family this year.

Then Christmas eve, a storm blew in around 6:30, the rain changed to sleet and after eating with my daughter and her boyfriend, we looked outside.  Much to our shock, we had 2 inches of snow on the ground and roads. I am 51 years old and this is my third white Christmas, it just doesn't happen around here.  I had been aching from the cool rain we had received all day but the aches changed to pain as the night went on even though I was safely inside where it was warm.  The temperature dropped to 18 with the wind chill down below 0.  We had 15-20 mph winds with gusts up to 50-60 mph.  OK, I'm officially through with winter now.  What happened to our supposed global warming?  Haven't heard much about that this past year.

I got a FieldSheer dual sport jacket for Christmas.  I can't wait to get out and test it once we get some decent weather again.  It is wind and water proof, has 11 zippered pockets for everything from maps to cell phones, a removable liner, and built in pads (chest, shoulder, collar bone, back and elbow).  I weighed and then put the jacket on and reweighed ... the jacket weighs 11 pounds!  I tried it out this afternoon while shoveling the snow and ice off of the sidewalks ... with a pair of shorts and tennis shoes on.  It's ok, the neighbors know I'm crazy any way.

I hope everyone had a good Christmas and was able to enjoy it with friends and family this year.

Thursday, December 24, 2009

Christmas Memories



This year our Christmas may not be as big or elaborate as in the past, but that doesn't stop what is in our hearts. I believe most people feel that Christmas is far too commercialized, unless perhaps, they own a retail store. Perhaps the commercialization can be blamed for the depression that many people feel around this time of year. I've got this, and this, a new car, and credit cards, but I still feel empty.

I have received many wonderful presents over the years for Christmas, but off the top of my head, I can't name one of them. I can, however recall the Christmas that uncle Jim got to come back for Christmas (major league baseball player) unexpectedly, or the year we had snow at Christmas and all of the kids along with some of the adults had a snowball fight or the year my cousin Ricky dressed up as Santa and came in with presents for all of the little kids, ...etc.

I have been a bit under the weather for a couple of weeks and although I am feeling better now, there's no denying that I just haven't felt up to, or really cared about getting all of the lights and decorations up this year. A big part of that feeling comes from living with RA day after day. But lets face it, Christmas isn't about having the best decorated house, or how much new stuff you can add to your outside display. Although, at our old house in Fort Smith, I had 2 great neighbors and the 3 of us started trying to outdo each other at Christmas. It was for fun, we used to help each other while visiting and laughing about who had the most lights up each year. One of those neighbors passed away this summer. By the time we sold our house and moved, there were 6 or 7 houses in on it ... some of them had never even put out outside lights before, but were out decorating, visiting and laughing with us.

I would like to wish you and all your families peace and happiness this season as well as good health and prosperity in 2010.

Sunday, December 20, 2009

I Really Am Lucky

It's been a challenging, but good week at work. I am settling in at my new job and gaining confidence by leaps and bounds now. I no longer have to check notes before I make a move, I just do it now. It was a little bit intimidating taking over the controls of a 10 million dollar press with only 3 weeks training, so I checked notes I had made quite a bit until it just all at once sunk in this week. Everything is controlled by computer on the press, so there was a lot to learn regarding what screen does what and where a screen was that you needed to get to. I know printing, I've been around printing for some 20+ years but this is a completely new press. I guess you can teach an old dog new tricks.

I am over my sinus infection so I am back on my methotrexate and am going in for an Orencia infusion Monday. It is good that we have these drugs to help fight off the progression of RA, but sometimes you don't really realize how much they are actually doing until you go off of them for a short time. I have been in an elevated state of pain all week. It hurt to walk, sit or stand up and my hands were stiff and swollen. I have had trouble hanging on to everything this week. Yesterday was my last work day for the week and I hurt so badly, it must have taken me 4-5 minutes to put my socks and boots on. I just couldn't bend anymore.

It's frustrating to have new rubber(tires) on my bike, it is now tagged and officially street legal for dual sport rides anywhere, we are going to have a 60 degree day tomorrow but I just hurt too bad to ride. I could ride no problem but I don't want to pay for it later since I'm already hurting more than normal. Man, looking back, I have turned in to a big wimp. I have raced with a broken ankle before, raced with 3 week old cracked ribs, ... now I won't even go out for a dual sport ride just because of a little RA pain.

I wish everyone a pain free and Merry Christmas and hope you can enjoy it with friends and family this year. Even though I have RA, I have been blessed many times over and this time of year it always hits me how lucky I really am.

Tuesday, December 15, 2009

Tis The Season

Not too much going on this week. I have been fighting off a mild sinus infection while working over the weekend. In addition to the long 12 hour shifts and fighting off the sinus, I did not take my methotrexate and missed an Orencia infusion, so my RA is making the most of the situation right now. Overall, I can't complain, I feel better after skipping MTX 2 weeks back to back and one infusion than before I switched to the Orencia. That's not to say that I don't hurt or that I don't have difficulty getting up and down or putting my shoes and socks on, but those are everyday things that I deal with. I truly don't know what it feels like nor do I ever expect to be pain free, ever again.

It's so cold I can't get out to do anything this week so I am cleaning up my music/computer room and doing a few things that I have been putting off. I bought some mp3's yesterday. I have an app on my iPhone that is called Shazam. If you hear a song that you don't know the name of, you open the app and hit the TAG NOW button and hold the phone toward the speaker. Within 20-30 seconds you have who the band is, the title of the song and the name of the CD, links to buy the song, videos and biographies and websites of the band. Amazing little app and best of all, it was a free app. I can't even imagine how big the database would have to be or the programming that went into this app, and they're giving it out free.

I have been working toward making my race bike street legal for dual sport rides that I do now. I finally tagged my bike yesterday, yep a full out woods race bike with a license plate on it. It looks pretty weird, but now if we get stopped, I will be legal. I have everything except turn signals on it. I am going to heat the shop up and put my new rear tire on later today.

I am so ready for some normal December temps so I can ride. The biggest part of December, we have averaged nearly 20 degrees below normal. Our daytime highs are what our normal overnight lows run for this time of the year. Have I told you lately that "I HATE WINTER". It never has been my favorite time of year, but I never hated it. Then enter RA, and it just flat out hurts me now. Oh well, tis the season to be hurting...falalalala.

Monday, December 7, 2009

Rough Going Back To Work

I was off for 11 days over Thanksgiving and put in 2 LONG rides on my bike and had a great Thanksgiving dinner with friend's and family. My RA paid me back for the first ride (171 miles) so the Saturday after Thanksgiving Randall talked me into going back out again. We had a crazy ride that included 2 flat tires, stopping to eat one of the best cheeseburgers you could ever have, riding brand new trail, getting lost and running into bats in the dark on the way back ... all at the end of November. And the crazy thing, I felt better after the ride than before I went. Never hurt after the second ride at all.

After going back to work this week, I hurt so bad the first day. I could barely walk due to the fact that we had press problems and I did not get to sit down except for my breaks. That means that I was standing, walking, climbing ladders and stairs and crawling on my hands and knees for 10 1/2 hours in steel toe boots. For those of you who have never worn steel toed boots, consider yourself very lucky, especially if you have damage to your feet. The second and third day were a little easier on me.

My printing supervisor stopped and asked me how my RA was and the medication I am taking for it now. His wife also has RA and we have talked several times about it. I told him I was on Orencia now and explained that I was a little disappointed that the results were not better than they are. He told me that his wife was using Orencia and it took her close to 6 months after starting it to really feel good. So now, I am hopeful that I will continue to get a little bit better.

I have been having some doubts about whether I can do the new job that I am training for. He also told me that he had been observing me, he appreciated me and that I was going to make an excellent press operator. The funny thing about this is, I was going to talk to him, when I went on my next break, about possibly turning my bid back. Odd how things work sometimes.

Monday, November 30, 2009

On To The Point

It has been 48 hours since loading up from my ride Saturday night and I still feel really good. Looking back on the ride, one of my favorite sayings popped into my head. Bad decisions make good stories. It was a beautiful day and even though we got lost, with the exception of running through the bats and Randall just barely making it back to the truck on fumes, we still had a great ride. Randall ran out of gas at 97.2 miles on our last ride. I was calculating the mileage in my head as we were riding back once we found a landmark and knew where we were at. The best I had it figured, was that he could make it to within 2-4 miles of the truck before running out of gas. We ducked through a shortcut on the way back and as it turns out, thankfully I was wrong. Randall made it all the way back to the truck with 97.4 miles on the tank of gas. Another 1/2 mile and he would have run out.

I didn't get sore or hurt after this ride, in fact, I didn't hurt until today around noon. I was making a pot of stew today and went to put the clean dishes up out of the dishwasher. I misjudged a knife, my wife insists on putting them in with the sharp end facing upward, and WHAM ... ran the tip of a steak knife about 3/8 inch up in between my thumb and thumbnail. You would have been proud of me though. In my younger days I would have taken the 6 quart stockpot in my other hand and invented the Olympic Cookware Toss. I was cool though, just muttered a "damn" and quickly grabbed a towel to wrap my thumb tight to help stop the bleeding. I didn't know a thumb had that much blood in it, I'm pretty sure my thumb had to be pumping out blood from my index finger by now. After my thumb finally bled out, I cleaned it, doctored and bandaged it.

I currently feel better about the Orencia now. Hopefully my rheumatologist was right, some people respond faster while some respond slower than the 3 month average date for seeing what it can do for me. I'm keeping my fingers crossed, that is, if I could cross them.

Around here if it's not one thing it's three, but one thing's for sure, there is never a dull moment. Remind me to tell you about the time that animal control had to shoot a rabid dog on our front porch.

Sunday, November 29, 2009

A Little Hair Of The Dog

I have been hurting this week from the after effects that a 171 mile dual sport ride Monday put on my RA. I got a phone call from Randall Tuesday afternoon wanting to go again Wednesday which I declined because I was just hurting too bad to go out. Well, want to go Saturday? I said that I would if I was feeling better. Friday evening Randall called back and asked how I felt and I told him "Let's go for a 100 miler". The truth is that I felt marginally better than I did earlier in the week, but the temperature was supposed to be an unseasonably warm 75. The way I looked at this is, I could sit around the house hurting or I could go do something I love to do and hurt. At least if I go ride, I will be enjoying some good weather and having a great time. Now you understand why I've never been accused of being normal.
We unloaded for a 100 mile dual sport ride Saturday taking dirt roads, trails and asphalt to Mena. The short story is that after 2 flat tires, running across a guy from England on a dual sport bike that we talked with for about 20 minutes, getting lost (big tine lost), finishing the last 1 1/2 hour of the ride in the dark (oh, and running through a group of bats in the dark) we made it ... with 160 miles. When we pulled back up to the truck at 7 pm, the temp was still 65. What a great day to be lost!
The crazy thing about this is I fully expected to be hurting worse this morning. The truth is, I feel really good this morning. I am not stiff, my hands and fingers, hip and shoulder are not hurting at all, zero, nadda, zip! Can someone explain this one to me? If all I have to do to feel better is ride my bike all day, then count me in. I seriously don't know why, I'm not going to question it, but I feel fantastic today.

Friday, November 27, 2009

Who Ordered This Train Wreck?

It's a terrible thing to be diagnosed with any type of disease. I know what I suffer from pales in comparison to what a lot of people suffer from, but when I was first diagnosed with RA, I felt numb for what must have been a solid two weeks. I had more questions than answers, didn't know who to talk to, trust or how to research a good rheumatologist. My first rheumatologist was not much help either, didn't like you asking questions, was not open to trying anything except what he wanted to give you. I stuck it out with him for a full year before finding a good one.
In my first 6 years, I have had my ups and downs, pain and near pain free days, but I am so glad it was me and not my wife or daughter. I usually play down the effects of my RA or or my true feelings about having it, but some days it is so frustrating while other days it just plain hurts me. This has been one of those days, this morning I couldn't seem to hang on to anything (good that I did not go riding today) and I was extremely tired after just waking up from 9 hours of sleep. I am stiff and hurt all over and my hands are swollen and hurting badly.
I learned a couple of lesson's Monday. I have said before that having RA is a constant learning experience. Monday I learned that 171 miles is too long for me to ride with my RA along with a much more important lesson. I often take Tylenol Arthritis after a ride to help with some of the pain, if needed. Monday I was going to be slick so I took 2 Tylenol Arthritis 1 hour before we started riding. Then I took 2 more with me to take at our gas stop, about halfway or 83 miles into the ride. I didn't hurt at all during the ride and as I was loading up Monday, was patting myself on the back. I had ridden farther that I ever did in 1 day when I was younger and healthy. I could just barely get out of bed Tuesday from hurting so bad. It seems that the Tylenol covered up my normal pains. When I start hurting I will head back to the truck and load up, but since I was not feeling any pain, I kept on riding way past my tolerance point.
I can deal with the pain if I know I caused it and had fun getting there. But somedays my RA just bestows excessive amounts of pain on me for no good reason at all. And then there is the clumsiness, the days you can't think clearly, the swelling and fatigue. Who ordered this train wreck? I truly hate that any of us have to go through what we are enduring.

Wednesday, November 25, 2009

ARTRAX SE3 REAR TIRE

This is a product review, which I don't normally do. Every once in a while a product comes along that makes you scratch your head and wonder why is that so cheap. We, as consumers, know that you get what you pay for but you still think, it might just work for me. Such was the case with a line of motorcycle tires known as Artrax. The tires are cheap, ... real cheap and Randall and I had been talking about them for some time. The KTM 525's that we both ride put out mid to upper 50's on the horsepower so no tire is going to last very long. But could these tires could get close to the same mileage as a Dunlop or Bridgestone?
I ordered the ARTRAX SE3 REAR TIRE and mounted it in mid September. The knobby pattern looked good, the knobs were a bit short, but it is an intermediate compound, this tire might actually work after all. My first ride on it wasn't good and I was ready to peel it off. It didn't hook up as well as my old worn out Bridgestone that I had just pulled off to put this tire on. I played with air pressure over the next 2 rides and got it to work slightly better with lower pressure. Not great, just better. I now have 5 rides on it and it is junk. There is a little under 1/8" of knob left and I only have 483 miles on it! I can get 1000 - 1200 miles out of a Dunlop or Bridgestone, and you will have better control over the bike with one of them on as well.
Below is a picture taken this afternoon after I washed my bike from yesterday's ride. As you can see it is basically a racing slick after less than 500 miles. Stay away form these tires, spend the extra $25 - $30 on a good tire that you know.

Tuesday, November 24, 2009

I Gave My RA The Day Off

I left the house at 7:35 Monday morning, it was 49 and sunny with a few clouds in the sky. But as we approach Poteau Mountain, there are clouds covering the top of the mountain. That is where we are going today. Running across the top of the mountain was dark, damp and dreary. A far cry from the 68 and sunny promised by our local weatherman. As we drop off of the other side of the mountain, it starts to lighten up a little, but no sun. Heavily overcast and no sun at all now, we keep going. Just before we get to US Highway 71, a huge buck jumps the road 100 yards in front of me. The ironic thing is that there is a truck parked about 20 yards on the backside of where the deer jumped the road. I quickly thought of Elmer Fudd hunting Bugs and Daffy. LOL

We had a good hard ride over to Blue Mountain, only getting (temporarily ) lost twice. We ran on up to a convenience store and gassed both bikes up and grabbed a Coke and took a short rest. We head back out and run up to the dam at Blue Mountain Lake and spent a while exploring the lake. There is a road that wraps all around the backside of the lake but that will be another day. There is 52 miles of shoreline and we had another route in mind for the afternoon portion of our ride.


We headed back on one of the alternate routes and ... about 9 miles later Randall pulls over with a flat front tire. For anyone keeping score, thats 3 rides in a row that Randall has had a flat tire. So he found a place that we could change the flat and about an hour later, didn't take us that long to change but some hunters stopped and we visited for quite a while, we are back on our way.


The trail we had planned to ride back across to Haw Creek was closed down. Loggers had come in and pushed a large mound of dirt and large trees up blocking 2 different entrances. They are in the process of building the road bed up so this means that we have lost another good trail section of the forrest. After the flat and losing time trying to get to the trail, we decided that we would just head back on the asphalt until we could jump on some dirt road and trail that we knew would be open. By the time we pulled back up to the truck we had 171 miles.
I will be honest, I am hurting today, but I never rode 171 miles in 1 day when I was healthy. My feet, right hand and right hip hurt from the abuse of the ride to my RA. My legs, calves and forearms are sore from not using these muscles enough and well ... my ass hurts because the seat on a KTM is not made to sit on for that long. But I'm smiling today anyway, what a great day it was yesterday. All of us that suffer from RA need a day off from it once in a while.

Wednesday, November 18, 2009

Orencia Update After Rheumatologist Appt

Quick update after my post yesterday. I went for my fourth Orencia infusion this morning and spoke quite frankly with my rheumatologist about my feelings on the Orencia.
After checking me over, he agreed that my hands are not swollen quite as bad as they were, was encouraged that my fatigue and feet are doing some better. He was also impressed that after putting in a 150 mile dual sport ride last week that I had little to no pain compared to my pre-Orencia days. He said that the three month target is an averaged date, not to get discouraged yet, that some people do react a little slower to the full effect and that he feels that by two months down the road I will be doing better.
He also said that if I am not, we will start discussing other options then. He does not want to see me go through another year like this year has been.
My rheumatologist and I began discussing switching medicines in early spring, but I am the one who wanted to hold off and give the Enbrel more time. It had worked well for me up to this point and we had a very cool and damp spring along with a extraordinarily wet summer this year. I didn't want to abandon the Enbrel just because of the unusual weather pattern.

Tuesday, November 17, 2009

Orencia Three Months In

I am just one day away from my fourth Orencia infusion and while I am doing better, I must admit I'm nowhere near pain free. I wasn't expecting to be completely pain free prior to starting Orencia, but after reading what several people said about how well it worked for them, I think that I may have gotten my hopes up a little too high. There are several pluses for Orencia along with a few minuses. So here is how I feel to date after being on Orencia for nearly three month's.

Positives
1) I no longer have to give myself two shots a week now.
2) My feet feel better for longer periods now.
3) I am able to ride longer distances on my motorcycle with less pain than pre-Orencia days.
4) Overall, my hands seem to have less swelling, although they still hurt.
5) Less pain has encouraged me to start working out again at the gym.
6) Fatigue is not gone, but seems to be better after starting on Orencia.

Negatives
1) I am not pain free.
2) Although my feet are better, they hurt badly after standing on them for extended periods.
3) My hands and fingers still hurt considerably.
4) After sitting for an extended period, it is still quite painful to stand up.
5) My hip still hurts too much to be able to ride my mountain bike.

Do you think it is wrong for us to wish to be pain free? In retrospect, I wasn't expecting a miracle drug to just come in and take all of the pain away, but it would have been nice. Overall I am feeling better and am glad I made the switch to Orencia, but I am still disappointed with some of the outcome.

Wednesday, November 11, 2009

Just Another Day

After a rough week at work last week, I recouped for a couple of days and Tuesday morning headed out on a new adventure with Randall. I have ridden motorcycles most of my life but always get excited when something different comes along. We had been studying the maps of the Ouachita National Forrest and had laid out a 200+ mile dual sport ride. Today was the day. There were lots of unsure things about this ride,
1) We weren't sure we could make it between gas stations.
2) We weren't sure we would have enough daylight, possibly finishing some of the asphalt section in the dark.
3) We weren't sure where we were going, the map uses numbers for roads and all of the roads have actual names for 911 service.
4) I wasn't sure how my RA would react to putting in that many miles.

We started out on Poteau Mountain Road and rode it out to Highway 71. Up 71 for 1 mile and turn back east and drop off of the hill we had been riding on top of. Just a little over 3 miles after turning off of Highway 71, I realized Randall was telling the truth. I just thought we had been in the middle of nowhere! We make a turn to the right and wind around the tight, twisty mountainous dirt road and are face to face with a semi coming toward us. I didn't know what he was planning on doing but I know I'm no match to play chicken with a semi pulling a trailer today. I stop and roll down into the ditch until he is by me, then I jump back out of the ditch and light the throttle up on the my KTM. In no time we are running 55-65 mph on the narrow, twisty dirt road again. Soon we get a rhythm going and are sliding the back end of our bikes into the turns and accelerating hard, often times sliding sideways with the front wheel in the air.

After stopping to check the map a couple of times, we think we know where we are headed. About 75 miles into our ride, Randall pulls over and ... once again has a flat tire. That's a flat tire two weeks in a row for Randall. To make matters worse, after finding a good place to pull the front wheel off to change the tube, Randall realized that he did not pack the new CO2 bottles to inflate the tire. So he put the front wheel back on the bike and head out trying to find a farm house that had a air compressor or pump. No luck. Either no one was home or we scared the hell out of them and they weren't going to answer their door.

Plan B resorted to us riding all the way into downtown Danville, Arkansas. Population 2392, most of whom drove by and stared at us (along with 2 policemen and a US Forrest Ranger) as Randall was changing his tire. They left us alone ... just wanted to watch. We had stopped at a filling station named Jerry's Station and borrowed some of his air, topped our bikes off with gas, grabbed a coke and a snack and were back on our way. If you are ever in Danville, stop in and say hey to Jerry, super nice guy with lots of stories. With all of the extra time spent with the flat and riding out of our way to find some air, we had to abandon the 200 mile loop, we were now in a race with daylight to get back to the truck.

We rode an extremely fast pace back taking time for nothing. We were coming in to turns hard, tapping the rear brake to get the back end broke loose and gassing it, sliding the bike through the corners on the narrow, single lane dirt roads. We were riding wheelies out of 3rd gear (at 40 mph) and jumping the bikes at every large rolling hump we came across in the roads. Most people, if they saw us riding, wouldn't believe that we are 51 years old, more like we're 20. I have often said that if I have to act like normal people do, I never want to grow up. We made it back with a little bit of daylight left.

This morning, after a good nights rest, I don't feel bad for putting in 150 miles yesterday. In fact the only thing that hurts is my wrist on my right hand (no jokes please) and both hands are stiff and swollen. We didn't finish the ride that we had planned yesterday, but we still rode hard, overcame adversity and laughed the whole way. And anytime you can do that, you have had a great day.

Sunday, November 8, 2009

Doing Pretty Good Considering

It has been a truly exhausting week. I continue to do good after my third Orencia infusion. I have been training for a new job at work and two of my four days at work this week, I was on my feet all day. That's twelve hours of standing, walking and climbing stairs for training on the press. If I thought it would have helped, I would have cried Thursday night after getting off of work. I don't think my feet have ever hurt that bad. After my shift I made it to the front door which is an accomplishment, the plant has 15 acres under it's roof and the pressroom is the next to the last building inside the plant. I walked outside and saw how far my truck was parked out in the parking lot and literally did not know if I could make it out to my truck. The good news is that I am learning the job at an above average pace, according to the trainer.

I have a 200 mile ride planned with Randall Tuesday morning. We have had this ride planned and three weeks ago were going to ride it but woke to a large storm moving into the area. This is the ride that Randall told me, "This would be a prime place for Sasquatch to live". We will have to watch our gas, it will be borderline on milage between gas stations. Randall also said "I thought we had been in the middle of nowhere before - not even close." This ride may make a good, next blog post.

We have a new dog that we rescued. She has been with us for a couple of weeks now and Misty (our inside dog) is adjusting to her now. Her name is Maggie and she is an Australian Terrier that we believe is about four years old. How anyone could dump or abandon a pet is beyond me, she has obviously been around people before. She is adapting to her new home very well. She is very protective of her new bed we bought for her and growls if Misty gets too close to her bed. Misty can eat her food, they share snacks, just don't get near her bed. LOL

Wednesday, November 4, 2009

Nailed It

I chose to ignore my pain Monday and had an absolutely great ride logging 130 miles, mostly dirt road with some old logging roads, and a small amount of single track trail thrown in. I fully expected to pay for my fun the next day, but the payback never came yesterday. Don't get me wrong, I am not complaining, ... just confused. Always before when I tend to push myself, I can expect my RA to pay me back with elevated pain for a day or sometimes two. For me, it's worth the spike in my pain level to be able to ride. I don't know if it's coincidence or if the Orencia is going helping me that much, I'm hoping it's the latter.

I got up yesterday morning and got a phone call from my daughter shortly after. She had a nail sticking through the side of her right rear tire. We just bought her a new vehicle this spring and she only had 5000 miles on it. I told her I would be up and take care of it, that she could drive my truck to class or wherever she needed to go whenever I got there. I was 25 miles out of town (she lives 80 miles north of us) and got another call that the dealership in the town she lives in did not have the same tire, that it would be tomorrow afternoon before they could have it in. So, a couple of calls later, I turned around and drove back into Fort Smith and pick the correct tire up and restart my journey back over the mountain.

We got an appointment to have the tire mounted up there and she had to run to class and then check with her adviser about a class for next semester. Everything worked out but it was a hectic morning and afternoon for both of us. It was 5:30 by the time she got back to her apartment and her boyfriend got off work at 6:00 so we all went out to eat at a place they had been telling me about. The restaurant, The Mellow Mushroom, was like stepping back into the late 60's. There was a large VW bus "hippied out" on the wall, tie dyes, peace signs and band memorabilia all over the place. Oh, by the way the pizza I ordered was awesome, David's calzone looked good and was so freakin" huge.

As I was leaving her apartment, I grabbed one of her barstools that was actually about to fall apart, and brought it home with me. I am going to add a couple of cross braces to try to persuade it to be a bit more rigid. I loosened up all of the screws on it, dabbed some wood glue on the joints, clamped and screwed it back together this morning. It is already in much better shape. I loved working with wood in my pre RA days, but now have quite a bit of damage to my hands and don't have the strength or grip I once had. I still have most of my wood tools though, so when a small project pops up, I can still enjoy it for a little while.

Monday, November 2, 2009

A Fast Day


I finished up a rough week at work Sunday night at 7 pm. I was hurting from being on my feet in steel toe work boots for most of my 12 hour shift, my hip was hurting slightly and my hands were aching. All of that no longer mattered when I found out my daughter and her boyfriend were coming by to see us in a few minutes. I hurried home and showered and ate a quick bite, just in time for them to show up at the front door. Although short, it was so good to see her. It eased my pain from 4 rough days at work this week.

I woke up early this morning and had to run back to the plant to take care of some insurance eligibilty questions, then gassed the truck up, ran home and loaded the KTM up. I hurt mildly this morning, about a 3 out of 10, but I was not letting a little hurting get in my way of an outstanding day. It was supposed to be 76 and sunny today, so I ran by and picked Randall up and we headed to the mountains.

We head out for Bates and were running a brisk pace due to getting a late start today. About 20 miles into our ride, Randall pulls over and we are starring at a flat rear tire on his bike. We find a place to change the tire, and after a 30 minute delay, are back on the road (so to speak) again. We were planning on a ride all the way down to Rich Mountain today, so we had to pick up the pace even more now. We also had to work some alternate routes in due to the heavy rains we have received over the last month.

We soon found big time fun in pushing ourselves on the dirt and fire roads we were taking today. At one point we saw a travel trailer being pulled a ways up in front of us. Great, I thought to myself, we are going to have to find a place to get around this trailer on these steep narrow roads. We were running 60 - 70 mph on these roads and were not catching them. We finally catch up close enough to see the trailer and it looked like it had 3 different colors of primer with a little bit of white sprayed on it. The trailer had 2 wheels on it, not matching each other and there was a big rust spot on the, well ... across the whole width of the back of it. I had a flashback to the figure 8 trailer races I have seen on Spike tv where pieces of the trailer are flying off behind the trailer, that's were we are ... behind the trailer running 55 mph. I back off and within 1/2 mile they turn right into the woods. Whew. My best guess is that they were going to abandon it in the woods! LOL

On the gas again and we don't slow down until we hit asphalt just north of Mena. We stop, order a sandwich and visit with the owner of the store for a little while, then we are back on our way. Now we are in a race to get back to the truck before the sun goes down on us. We were flying back, barely taking time to notice how high the water had been recently. I came into a hairpin turn way to hot and wound up in the ditch, but never slowed down below 20 mph and kept the throttle on, jumped back out on the road and was back up to 50 in no time. Possibly needing some clean underwear, but other than that I was fine. We kept the throttle lit and beat the darkness back to the truck ... and had a great day!

Monday, October 26, 2009

Dos and Don'ts of a Successful Fitness Plan

I am just starting to feel good enough to hit the gym again so as I was reminding myself what to do, I thought I would just go ahead and post some do's and don'ts. I realize that not everyone with RA is able to exercise, I have only worked out hit and miss since January, but if you are able to and thinking about starting an exercise program, here are some helpful tips.

Starting a fitness program doesn’t have to be overwhelming. Once you’ve committed to working out, there are some things you can do to ensure you’ll exceed your short and long term fitness goals. There are also a few things you should avoid at all costs to ensure you stay on the path to fitness and wellness.

Do
Write down your fitness goals. You’re more likely to stick with a program once you have set some specific goals.
Always strive to eat a well balanced diet that includes ample servings of vegetables and fruit.
Break down your meals so you are eating several mini meals per day.
Assess your current fitness level before starting an exercise program. By doing so, you’ll be able to establish goals that meet your specific fitness needs.
Consider talking with your health care provider before embarking on a fitness program, particularly if you are struggling with a health condition such as diabetes or obesity.
Supplement your diet with essential fatty acids. You can do this by eating two servings of fish per week.
Choose alternatives to satisfy your cravings when possible. Consider frozen fruit over ice cream or opt for a mini chocolate instead of the whole candy bar.
Always stretch before and after your exercise routine.
Don’t overdo it! Try doing too much at once and you’ll burn out swiftly. Slowly increase the intensity of your workouts.
Diversify your workout routine. If you do the same exercises day after day, you’ll quickly tire and are more likely to skip workouts.
Work out with a friend. You’ll help motivate each other.
Keep healthy snacks available at all times. You’re less likely to grab junk food if something good for you is readily available.
Weigh yourself once a week, if possible monitor your BP and pulse weekly also.
Don’t
Over-train. Your body needs time to recover in between workouts.
Skip breakfast. Eating breakfast will jump start your metabolism and provide you with the energy you need to get through the day.
Skip stretching.
Skimp on sleep.
Set unrealistic goals. A healthy rate of weight loss is 1-2 pounds per week. If you have 50 pounds to lose, don’t expect it to come off overnight, you’ll set yourself up for disappointment.
Compare your successes and failures to others. Everyone is unique, and what works for some may not work for others.
Work out randomly. Work out regularly to maximize the benefits you’ll reap from a consistent fitness routine.
Give up. Consider talking with a friend in times of discouragement.
Forget to reward yourself on occasion.

Sunday, October 25, 2009

Friendship

We all know the importance of having good friends. I'm not talking about the people you work with and enjoy their company at work, but never do anything together outside of work. I'm talking about the "long term best friend, the get up in the middle of the night and bail your butt out of jail" friendship that most of us have with one of two of our closest friends. Friendship isn't easy, making a good friend is sort of like getting to select a new family member. Friendship also comes with a degree of risk and responsibility. Friends aren't always forever. I have had many friends that come and go, many I have tried to keep in contact with, but over the years the contact just breaks down.

Suffering from a disease like we have where you appear to be alright can be hard on friendships. Friends often want you to go somewhere with them and if you tell them that you are hurting or just too tired to go anywhere, you often get "the look". And one of my favorites is how RA can move from one body part to another. Some have called me on it, "I thought it was your right shoulder that hurt yesterday?" It did but today my hip is hurting. That's ok, who needs doubters as friends anyway. Give me one real friend rather than 10 friends who doubt you or talk about you when you're not around.

I have two of the best friends that anyone could ever ask for. Mike, Randall and I have been riding and racing together for about 33 years now. I met Mike by chance, one crisp spring morning, just outside of Fayetteville. I was going riding and passed him sitting on the side of the road with his bike in the back of his truck. He had just moved here from Kansas and didn't know anyone that rode here. Mike followed me out to the woods and we have been riding together ever since. Randall and I actually met through our ex-wives. We had seen each other around town, usually with a dirt bike in the back of our truck, but our ex wives had a class together at college and introduced us. We hit it off and, like Mike, have been riding together ever since. I just got off of the phone with Randall this afternoon. We have a long dual sport ride planned for Tuesday and I just called and left a message for Mike. No answer yet, Mike has had bike problems so we don't even know if his bike is back together yet. But one thing is for sure, if it is and he can get the day off ... he will be down here Tuesday morning.

Just for the record, I've never seen the inside of a jail cell, but I am assuming that Mike or Randall would be there if I needed them. We've been there for each other for various needs, help and support over the last 30 years.

Thursday, October 22, 2009

Good News, Orencia Is Working


Good News. The Orencia is working. Bad news, we continue to be pummeled by rain and storms. We actually had 3 days without rain from Saturday afternoon until Tuesday mid morning. It was wonderful to see the sun and experience normal fall conditions for those 3 days. Sunday and Monday night I felt really good at work with minimal pain for a couple of rough nights on the press. I am now convinced that, if our weather pattern will return back to normal, the Orencia will help me. I even felt good enough to workout with weights yesterday before going back to work and am going to do some cardio tonight. It has been a while since I have felt up to a good hard workout and I have missed being able to hit the gym. I am proceeding cautiously with the gym, don't want to overdo it right away, but boy did it feel good to work the muscles a little bit!

I went in for my 3rd Orencia infusion today and am feeling good right now, despite the rain. The nurse that does the normal infusions was out today and the backup infusion nurse missed my vein the first time. No big deal. Then she missed the second time. OK, no big deal, lets just get it in this nest time. Nope. Change arms, Nope. The sixth time we finally see blood (no not hers) and everything went smoothly after that.

More Good News. I have a new job bid where I work. I am training to run the front end of the press. There is a lot more thinking involved with registering the colors on the jobs, QC checks, dye stains for coating, ink viscosity checks, etc, but it is far less physical than the job I have done for the last 7 years. I just hope I'm smart enough to do the job. The bad side is that I am training on days and after working 9 years of nights, I can not sleep longer than 3-4 hours at night. You would think that if you are dog tired that it would be no problem sleeping. Guess I'm just weird, I have no problem falling asleep ... but at 2-3 am, I am wide awake and can not go back to sleep.

More Good News Part 3. We are planning a good long dual sport ride for Tuesday. Randall and I are going to ride, or attempt to ride, a new loop that we think we can make in one day. It is 200+ miles and we believe that we can make it between gas stations if we ride conservatively enough. I am reminded of one of my favorite old sayings, "Bad Decisions Make Good Stories".

Wednesday, October 14, 2009

What if Lance Armstrong had RA


What would Lance Armstrong have done if he had been diagnosed with RA? We all know Lance's strength in surviving cancer, becoming a role model and spokesman for cancer research and support as well as winning the Tour de France a record breaking seven times after beating cancer. Lance has inspired countless cancer patients into getting back up and getting on with their lives. But what would Lance have been able to do had he been diagnosed with our disease? My guess is he would not have hung his bicycle up in the garage and settled on looking backward at what he had accomplished. I also doubt that he would have won seven tours, but what an impressive spokesman we would have had. I'm not wishing RA on anyone, including Lance, just sitting here wondering what might have happened for the RA community had this dynamic athlete shared our disease.

Little known fact about me: Mike and I started riding road bikes in 1985 for a good cardio workout to improve our endurance for motorcycle racing. We were soon putting in 35-60 mile rides and were hooked. Before long, we both bought Cannondale bicycles and soon we were riding centuries (100 mile organized bicycle rides). We were also into mountain bikes as well, just a natural progression from racing dirt bikes to riding mountain bikes in the woods. I have been a huge Lance fan since around 91-92 when he won the US Amateur Championship and went to the 92 Summer Olympics.

Lance is the founder and chairman of the Lance Armstrong Foundation for cancer research and support.
He won the Tour de France a record-breaking seven consecutive years, from 1999 to 2005. He is the only person to win the Tour seven times.

Thursday, October 8, 2009

A Stormy Day

It's been a crazy week for me, I have worked 12 hours 5 days in a row, tonight is my first night off and we are on the edge of a major storm moving through ... in the fall. It is October and, at 10 pm, the temperature is still 85 with 70% humidity. It feels more like a stormy spring night, not fall.

My daughter lives 80 miles north of us and as the cold front hit them about 7:30 this evening, it dropped a small tornado. No damage to speak of but she had stopped at Arby's on her way to buy some rain boots (she walks long distance's at college) and the tornado sirens started going off. She hurriedly called me to ask if I could tell her what was going on with the weather. I had just walked into Best Buy, so I quickly walked over to the computers and found one that was online. I pulled up the weather channel.com and plugged in her zip and sure enough they had a tornado warning out. I put the radar into motion and the leading edge of the storm was not quite to Fayetteville so I told her to stay put. About that time the manager of Arby's locked the front doors and asked all of the customers and employees to come into the cooler for safety from the storm. We sent text messages back and forth as I was borrowing the internet from Best Buy to keep her and the Arby's crew updated on the storm. All turned out alright, but it was a scary moment for my daughter as well as a scary moment for me. It is difficult as a parent knowing there is nothing you can do as danger approaches your child and you are 80 miles away.

As I was typing this blog, the wind just blew one of our large rocking chairs off of the front porch, so I guess I will go watch the approaching storm for myself now.

Tuesday, October 6, 2009

Back to Hurting

I have been feeling better and was encouraged after the switch from Enbrel to Orencia. My rheumatologist told me to give the Orencia six weeks to see an improvement and that in three months that I should see what it can do for me. I'm rather impatient, especially when it comes to pain, but after my second Orencia infusion, my feet and hands were not hurting as badly as they had been. Then Saturday night it started raining and we have had storms move through the last two days. I have been back to hurting, especially at work, climbing up and down the stairs on the press that I work on.

I am not giving hope in the Orencia, but I am disappointed that I am back to hurting so quickly with a couple of days of rain and storms moving through. I know it is too early to tell, but I was hoping that it was already working for me. I go in for my third infusion Thursday, then I will be on a once a month infusion schedule.

Sunday, October 4, 2009

Been A Good Week

I am noticing a difference in my RA after having taken two Orencia infusions. I am feeling better and less fatigued. I have felt like doing more, but am cautious until I find out that it is the new medicine working and not just a coincidence that I am better. I go in for my third Orencia infusion this Thursday, 10/8.

I have spent this week cleaning my garage out. I will admit it up front, I am a pack rat. I have owned 27 motorcycles since I was 12. I had parts to probably 26 of those still in my garage. I could tell you what the part was but had absolutely no idea what bike some of the parts came off of. Now here's an even scarier part ... some of the parts I did remember, I could remember were no good. I was just hanging onto them in case I needed to make a part out of two "no good" parts. Don't laugh, I am serious. I finally got to the point that I couldn't hang good parts (for the two bikes that I currently own) on my pegboard (I like to have normal wear items on hand in my garage) or in my "parts" tool cabinet. I have made two trips to the dump and I'm still not finished.



Friday night my cousin brought his son, Kaid, down to spend the night with me and go ride Saturday. Scott asked me to show Kaid a few things about taking care of his dirt bike. I made a "cheat sheet" for Kaid, detailing step by step what to do before and after each ride. I also made a maintenance log for him to track when he does things to his bike. Kaid was very attentive and wanted to learn, so I walked him through, actually making him do most of the work. They have had the bike for him a year and never even cleaned the air filter yet, so it was in dire need of some maintenance. We ordered some pizza, worked on his bike til 11:00 pm then came in and watched Nitro Circus Trillbillies Double Wide. It is one of Travis Pastrana's best video's yet, but don't expect to find it at Blockbuster. These guys are pure adrenaline junkies and even if you don't like dirt bikes, you will find something on the DVD you will like. There's everything from back flips and hydroplaning dirt bikes, to rally cars, monster trucks, zip lines, base jumping and even Travis doing a back flip on a child's big wheel (oh and the asphalt downhill race on big wheels was cool too).

We woke up at the crack of 9, loaded the bikes and headed out for the woods. We had a good 75 mile dual sport ride that consisted mostly of dirt road with just a bit of asphalt and single track trail. This was the first weekend of bow season, so we preferred to not be shot at and stuck to riding the roads yesterday. Kaid was getting hungry about an hour into the ride so I changed up what I had planned to ride, and made a loop over to Haw Creek, stopped, grabbed a cheeseburger and headed back a different way. We dropped off down in the bottoms and rode across a couple of one lane, low water bridges. It has been a crazy year here and for this time of the year, the creeks still have an unbelievable amount of water in them. As we were loading up, Kaid came over and gave me a hug and said "thank you, I had a really great time". I told Kaid that the next time we do this, we will drink some whiskey and shoot at the neighbor's cats*. He grinned real big and said ok, to which my cousin Scott replied, "that sounds like fun, if you're going to do that, I'll stay and spend the night with you guys".

* Legal Disclaimer (sort of): The owner of this blog would like to note that no cats will be harmed should Kaid come down again.

Wednesday, September 30, 2009

Crazy Co-Workers

A good friend that I work with, and ride with occasionally, had a serious crash Sunday afternoon. He has a broken left ankle, both jaws are broke and has damaged some disc's in his neck (best description I could get at work last night). I haven't talked to him, right ... like he is going to talk with both jaws broken, ok I haven't talked to his wife yet to find out what is going on with him. Dan is a good, happy go lucky, guy that always has a smile on his face and knows no stranger.

I am feeling a little bit better, have made it pretty good at work the last two nights. We had a paper break last night so I had a lot of stair climbing to do, threading paper back through five of the six ovens on the press. I am even feeling good while pushing the rolls of paper to load them into the press. The average weight on the rolls of paper we run is 3400 pounds. Last night about midway through the shift, a co-worker suddenly contracted a case of mischievousness and got the foam hand cleaner out. She had two handful's of foam and came after me. She caught me off guard, but missed and wasn't expecting me to salvage what I had on my shirt and come running after her. We were chasing each other like kids around the playground and everyone in the press room stopped and were watching us laughing with us. I am 51 and she is 46 ... she was laughing and giggling so hard she couldn't do anything except stand still and giggle as I got her back ... except I didn't miss like she did. For a brief moment, I forgot all about pain, responsibility, everything ... I was a kid again and it was a great feeling.

Friday, September 25, 2009

Work, Work, Work

Not much has been happening this week except work. On my work days, I work, sleep, briefly workout (if I am up to it) and check my email. I have worked 18 out of the last 21 days so I am behind on everything. On the upside of this, I do have a job still and making $32/hour OT isn't all bad.

I went for my second Orencia infusion yesterday, 9/24, and all went smoothly. After working all night and then staying up til my infusion at 10 am and taking the Benadryl before the infusion, I could barely stay awake to drive back home. I absolutely melted into bed as soon as I walked into the house. I can't remember when it has felt this good to be able to lay down. I slept five hours before my wife woke me up to go out and eat. She had been in class all day at the hospital and was extremely tired and wanted to eat so she could lay down and take a nap. Can you see the irony here? She wakes me up so she can go eat and come back home and take a nap. She is learning the joys of night shift and having to switch back over to days on your days off to do normal things. She is complaining about being tired and fatigued all the time now, and she doesn't have RA. In my opinion, humans were not meant to work nights, it is extremely hard on you both physically and mentally. But the pay is good where we are at and there aren't many jobs to be had right now in our region of the US.

I have my bike ready to ride, just waiting for some days off. My air compressor burned up this week, so just when I had a little bit of money stuck back for riding this fall and winter, I had to go buy one today. I got a good deal on a 2.5 hp 10 gallon Black and Decker. I started to buy it yesterday at Home Depot, they had a pallet with 13 of them on it, but I am really bad about wanting to research things and read reviews by actual people who own the product. After reading 40+ reviews and the compressor having 5 out of 5 stars rating, I headed back to buy one this morning and to my surprise, there were 3 left when I walked in the store at 9 am today.

Saturday, September 19, 2009

A Post Without A Point

As most of you know, my blog consists of a personal impact that RA puts on me day to day as well as my days of riding my motorcycle off-road. I guess you could say motorcycles were my first love. Just last night, my wife was at work, so I ordered a pizza and headed out to the shop. I tuned in the Southside high school football game and started my maintenance routine on my KTM 525. Half a pizza, one Dr. Pepper and a Southside win later, I had the KTM ready to ride. I started it up at 10:30 pm, much to the neighbors disapproval, and as it sat in the garage idling, I suddenly realized I had this big dumb grin on my face. I'm 51 years old and I'm grinning like a teenager looking at his prom date.

Not much has been going on lately except work. I have only had one day off out of the last two weeks. Since I work 12 hour shifts that means you go to work, come home and unwind for an hour or so and try to get a good 8 hours of sleep, then back to work. Twelve hour days hurt me with my RA but I am reluctant to complain because with the economy in a downward spiral there are so many people out there without a job. It would be pretty petty of me to complain (but several of my co-workers are) about having to work too much. I have today and tomorrow off so I am trying to catch up on some much needed yard work before the neighbors kick us out of the neighborhood.

My wife is an RN and brought home a printout from uptodate.com entitled "What's New In Rheumatology". I took it to work a couple of night ago and read it then the next day checked the website out. If you are interested, here is the link for the RA portion of their website:

up to date.com RA section

Here is an excerpt from the RA heading: "The TNF inhibitor golimumab, which is given once monthly by subcutaneous injection, was shown to be effective in rheumatoid arthritis (RA) in a large phase 3 trial [19]. It has been approved by the FDA for the treatment of RA (as well as psoriatic arthritis and ankylosing spondylitis). The role of golimumab in RA treatment relative to other TNF inhibitors, with which there is greater clinical experience, remains to be defined." If you do go to the site, you can view the sections, but you will have to join (free) if you want to check out any of the links contained in the articles.

Golimumab is a human monoclonal antibody which is used as an immunosuppressive drug and marketed under the brand name Simponi. Golimumab targets tumor necrosis factor alpha (TNF-alpha), a pro-inflammatory molecule and hence is a TNF inhibitor. Johnson & Johnson, the parent company of Centocor, has requested approval from European Medicines Agency for the use of golimumab as a treatment for rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis. Golimumab will be marketed by Schering-Plough in Europe

My feet are continuing to do better since my first Orencia infusion. We have had a full week of rain and the extended moisture has dampened (no pun intended) both my mood and my pain. I am still, overall, doing better though but I really question whether it is the medicine change or pure coincidence that I am improving this quickly after just one infusion.

Liz, if you drop back by, send me your email address to: tharr@wikianswers.com We have a lot in common and I would like to find out a few things about your riding and working with RA.

Sunday, September 13, 2009

Orencia Infusion part 2

I had my first Orencia infusion on Thursday, 9/10. I did not know what to expect but was relieved that the experience was complication free. I was given two Tylenol and two Benadryl prior to starting the procedure. After the iv needle was inserted into my hand, and blood drawn for tests, the actual infusion was started. There was no burning or stinging, in fact there was no feeling at all during the process.

I took my iPod with me and listened to music while the hour long process played out and I believe I even dozed off for about 15 minutes of it. I had worked 12 hours the night before getting off at 7 am and was at the doctors office at 9:30 am. I was so exhausted, I just hope I didn't snore!

I don't know whether it's coincidence or whether it's mental (I've been accused of being mental more than once), but starting Thursday night at work, my feet have not hurt as badly as they normally do. I know the Orencia cannot work that quickly, but I have definitely felt better since taking the first treatment.

But all good things must come to an end. We have had rain the last 24-28 hours and last night at work around 2:30 am I began hurting. By 4:30 am I was in quit a bit of pain and by the time I got off at 7 am, I limped home and crawled in bed. I know we needed the rain, but it sure messed a good thing up for me this weekend.

Friday, September 11, 2009

Orencia Infusion part 1

September 11, it used to just be any other date, but I cringe every time this date rolls around now. I think about the 9/11 terrorist attacks several times a year still, but on this date I actually run through my mind where I was, watching the tv in horror as the towers came down, the sickness for lives lost, the emptiness I suddenly felt. If we could only recapture the feelings that were present on 9/12, I feel we would be a better country. You could not find an American flag in stock anywhere, everyone was flying one. There was no bickering between political parties, they were working together for America, not for their party. We haven't been that together as a country since. I guess I will feel this way about 9/11 until the day I die.

I had my first Orencia infusion yesterday and all went well with it. Not knowing exactly what to expect, I took my iPod with me, good thing too, the tv in the infusion room was tuned into the View. Nothing against anyone who watches it, just not my kind of show. After the nurse got the iv started, I cranked up some 3 Doors Down, Audioslave and the on to some classic ZZ Top. Not a bad way to spend an hour in one of the most comfortable recliners I have ever kicked back in. Side note, when the nurse took my blood pressure she asked me if I was on blood pressure medicine. I asked her what my BP was expecting it to be high from her expression. She replied 108/64, that is very low for people she sees. Most people coming in for this tend to have elevated blood pressures from being nervous.

After the infusion, I went home and crawled in bed (I got off work at 7 am and finished the infusion at 11am) to get some much needed rest. I had to go back to work in a few short hours and slept very well, woke up rested and nearly pain free. I had a good night at work despite having a ton of problems with the press. I even managed 40 minutes of walking between 2 of my breaks last night.

I am optimistic that my pain and fatigue will decrease once I have a couple of months of the Orencia. I have another infusion in 2 weeks, then another one 2 weeks after that, then will be on once a month infusions.

Monday, September 7, 2009

Hostile Takeover

Rheumatoid Arthritis is a very frustrating disease. I am not in denial of it, I do not sit around and feel sorry for myself nor do I want sympathy from anyone. I go on about my everyday life as best I can, yet somedays it is on a day by day basis as far as what I can do. I try to plan things out, but as all of you with RA know, those plans may have to be cancelled or rearranged at any given moment. I don't like to complain, but occasionally, I just get tired of hurting!

Even when things do go as planned, often the after effects of having a few hours of fun can leave you questioning whether it was worth it or not. Yesterday I went riding with two of my cousins and we put in 90 miles with about 20 miles of it being rough single track trails. Prior to the ride my pain level was around a two with no fatigue, for me, I felt extremely good. I felt good through the ride, stood up on the pegs a lot through the day and had a good safe ride. Not that we didn't take a few chances and push the edge throughout the day, it wouldn't be a good ride if you didn't push your ability a little bit.

We hit one trail that was absolutely packed with spiderwebs and big spiders hanging on them. Since I was riding out front, I got all of the spiderwebs and collected all of the spiders also. I stopped several times to knock spiders off of me and I even had one walk across my goggles while I was riding. One web I hit had a huge spider hanging on it and I couldn't avoid it. It made a loud thud when it hit my helmet and, even though I'm not scared of spiders, it actually sent shivers down my spine. I locked my rear brake up and was trying to unbuckle my helmet with one hand while the bike was skidding to a stop. I quickly knocked him off, I'm not sure what kind it was, but it was a good four inches in diameter.

I loaded up feeling great yesterday afternoon and woke up in pain this morning. Right now my pain is a solid five, I'm having trouble walking and my hands are once again swollen along with joint pain in my hips and right shoulder.

OK, I am currently hurting because I'm hard headed and insist on not letting RA have total control over me. I refuse to stay at home when I feel good just because I'm afraid my RA pain level might increase. I wasn't prepared for this hostile takeover of my body and I vow to fight back and have fun every moment I can.

Wednesday, September 2, 2009

Low Pain, No Fatigue



I had an unexpected turn Sunday at work ... suddenly out of nowhere, I started feeling better. By the time I finished my 12 hour shift I was still feeling good, so I went home and worked out. I got up Monday afternoon to go back to work, expecting to feel "back to normal", but was surprised to find I still felt very good.

I don't know why, I'm not going to question it, I'll just kick back and enjoy it while it lasts. I'm not pain free, but certainly better. My pain level for the last three days has been about a two, but more importantly, the fatigue is gone. I have had energy and it feels fantastic! It has been so long, I almost forgot what it feels like.

After finishing a 12 hour shift this morning at 7 am, I loaded my bike and gear bag and headed for the woods (see number 1 of my previous post). I knew we had rain with the threat of severe weather moving in this morning, but I was riding no matter what. I FELT GOOD. I unloaded and quickly got over the mountain and crossed a couple of creeks. This is the time of year when all deep mudholes and creeks become rancid little puddles - you go around them if possible. There is nothing quite like busting a mudhole in 3rd gear and catching a mouthful of stagnate, sewer smelling water! I started up one of my favorite singletrack trails and noticed cow patties about a mile into it. I kept going at a pretty good pace and as I round a tight little corner, I am face to face with 3 longhorn steer's shoulder to shoulder filling up the trail. Reminded me of an offensive line in football. I'll have to admit, even this one took me by surprise. They weren't impressed with my KTM and soon two of them started grunting, I'm pretty sure they were calling an audible on me. Since 3 against 1 isn't good odds (especially if you are the 1) and since I don't have horns and they do, I figured I would turn around and ride someplace that didn't have quite as many longhorn steers on it.

I put in a good little ride and when exiting a fast, old logging road, I turned back north onto a dirt road and the sky was deep, dark blue. Not a black sky but not far from it, so since I was 25 miles from the truck, I lit the throttle up trying to beat the storm. I rode an exhilarating pace and loaded up just ahead of the preliminary rains. The temperature must have dropped 7-10 degrees just before it rolled in this morning. I had changed back into my shorts and t-shirt and just got everything in the truck when it started raining. I couldn't have timed it any better. Not a bad day, I snuck a 51 mile ride in on a work day and beat the rain back to the truck.

I'm anxious about starting my Orencia treatments next week. I want to feel better all of the time! I don't know how much it will help me, but I have to do something, the Enbrel is just not working for me like it used to.

Tuesday, September 1, 2009

10 Things Learned In 6 Years

The first six years into my journey with RA has truly been a learning experience. Even today, I continue to learn from it. Here are 10 things that I have learned from my new life with RA. By no means is this all that I have learned, just sort of my top 10 list.

1) I have learned that I am often my own worst enemy. I am bad, even today, about pushing myself to do more, even when I'm in a flare.

2) I have learned to recognize a flare before it gets bad. After first being diagnosed, I thought that flares were just something you lived through, I didn't know (nor was I told by my first rheumatologist), that I could control, to some degree, the severity of flare ups.

3) I have learned to alter my lifestyle to allow myself to have fun even though I do have RA. I raced off road motorcycles through the woods for 14 years but have adapted to dual sport riding instead. It's not as exciting, but hey, I'm still riding!

4) I have learned that having RA is not the end of the world, yes your world changes. You still enjoy life and those brief moments that you can do something pain free make you feel like your on top of the world now.

5) I have learned that even just a little bit of exercise each day makes me feel better. However, there are some days when I just hurt too bad, and I don't workout. I don't feel guilty about it either like I did when I was younger and healthy.

6) I have learned not to worry about things that used to drive me nuts. It has not easy for me giving up this control but it has been for the best.

7) I have learned that not all rheumatologist are created equal. I had a lousy one to start off with, but I could get in to see him immediately (should have been a warning indicator right there). A year later I was doing some better but due to insurance change at work had to select a different one. That was the one of the best things that has ever happened to me regarding my RA.

8) I have learned to slow down and appreciate the beauty of every day that God gives us on this earth. The beauty of a sunrise or sunset, a summer rain, a rainbow, a fresh snow, the list is endless. Most of these I was too busy to stop and appreciate in my pre-RA days.

9) I have learned that I can make a difference. I have been slowly educating the people I work with (about 30 in my department) about RA and most of them do seem to care and understand. Just a couple of month's ago a fellow worker approached me and said "I just found out my aunt has RA now." I told her that I work with a guy that has it and started telling her things that I do or don't do to try to help her with it. That is not the only situation like that, but at that point I realized that they really are listening.

10) Everyone you meet has a sure fire guaranteed remedy. I just listen politely, thank them and go on about my day. It seems 90% of the people get RA confused with osteoarthritis or just about anything else like gout, shingles, flu or a broken leg. But they do know what will fix it though!

Friday, August 28, 2009

Work and My RA Pain

I have hurt moderately for the biggest part of this week. I am reluctant to type that after reading about other RAer's condition's and having just lost a really good friend at work last week to a heart attack in her sleep.

My pain is very real and this morning as I limped from the car to the front door, my feet hurt so bad, I dreaded each step as I was about to put weight down on them. My hips have been bothering me a little more than normal and my hands have been more swollen and stiff than usual. All of this comes after working my normal 12 hour shift.

Again, I almost feel guilty talking about the pain because I have read about so many RA patients who have had to go on disability because they can not work any more. I am stuck in the middle, I have had fellow RAer's tell me they wish that they could work again and then, on the other hand, I have actually had healthy people at work tell me, "I wish I had what you do (funny thing about our disease ... we don't look sick to most people), I would quit work and draw disability".

Odd situation, to be stuck in the middle in pain, yet be envied by both sides. I am starting my Orencia injections in two weeks and hope that a switch in medicine will improve my pain and energy level.

On the upside of the week, I get my truck back tomorrow from the body shop. I have missed my truck much more than I thought I would, it is so much easier to get in and out of than the car is. I have been having $6000 worth of hail damage repaired. Yes, $6000. Tennis and baseball sized hail with rotation from a tornado that did not touch down, but beat the living crap out of my truck. The plant that I work at had 228 skylights in the warehouse and 17 plate glass windows in the offices broke out that night. For a few moments, I literally thought those of us at work that night might die. It was one of the scariest storm experiences I have been through so far. We thought the roof was being pulled off of the building and in places it really had been pulled back.

Tuesday, August 25, 2009

Reckless Ramblings


I went to work last night with a moderate case of fatigue. Pain was on the low end of the scale, but it just took everything I had to put one foot in front of the other. This is not a good way to start a 12 hour shift. I made it through the night alright but my pain level has risen to about a 4. I am finishing a quick breakfast, 20 minutes of weights, a shower and then crawling in bed.

I have to get up early this afternoon and go to the funeral of a good friend I worked with. She was 44 and from preliminary indications, had a heart attack in her sleep. Work has not been the same this week without her. She was always calling me crip, old fart, old man, on and on. Of course I always had a comeback for everything she called me. I miss her.

I replaced front wheel bearings, spacers, front tire and tube, front brake pads, flushed the front brake line out and replaced brake fluid and bled the line out, cleaned the air filter and changed oil and filters on my KTM last week. Yes, it hurt my hands and they were swollen for three days, but had I taken my bike to a shop for all of this, the labor alone would have been over $300.

I have the rear wheel, tire, shock and swingarm to finish this week and I will be ready for fall and winter riding.

I talked with a good friend from high school that I am becoming reacquainted with on Facebook. We had lost contact with each other after our second year of college. He has a BMW 1200 GS dual sport bike and is coming down around the end of September and we are going on a 150 mile dual sport ride. I have the maps out and am laying a loop out consisting mainly of dirt and old fire roads with a little bit of asphalt. I am excited to be doing something like this with Chip after not seeing him for 28 years.

Saturday, August 22, 2009

Some Old Racing Moments



I had a good time racing off road when I was younger. I raced motorcycles from age 20 to 34. I raced competitively from age 25 to 31. These are the years that I literally ate, slept and breathed motorcycles. I have collected lots of memories, trophies and ... yes, injuries. I have broken 14 bones, sustained 3 concussions, knocked a front tooth out. Actually the tooth is not due to racing, I broke the tooth out playing HS football. I actually just broke the crown racing.

To an outsider, this sounds completely crazy putting your body through this kind of torture. I, nor anyone else in racing, thought twice about the danger of it. It's hard to explain to someone who has never been involved in racing. The excitement starts about one hour before the race as you're double checking your bike prep. Then it builds more a half hour before the start as you put all of your gear ( knee pads, hip pads, leathers, heavy socks, boots, jersey, elbow pads, chest protector) on. Again, after you have all of your gear on you do a third check on your bike prep as you top off the gas tank and take your gas can to the emergency gas truck. Off road races often do not run back through camp so to complete 100 miles through the woods, you need extra gas. Now it is about 15 minutes from the start and you have this sick feeling in the pit of your stomach. That's ok, it just means your competitive, you're not actually going to throw up, at least I never did. Now it's time to start the bike and let it warm up. As the bike is warming up you put your helmet, gloves and goggles on, then ride up to the start line. Big time butterflies now, you are checking out who you are riding with and against, zero your odometer out and get your computer out of sleep mode for the start.

As you blast off of the starting line, everyone is fighting for the same piece of real estate, a narrow opening at the edge of the woods that all of us are rushing toward. As you run through a couple of turns, sometimes maybe just a slight dogleg, you are handlebar to handlebar with your competition, sometimes you get a handlebar in the elbow or the side as you hit the first turn a little too fast. You don't even think about that, just about inching ahead of this guy riding next to me. You are running on pure adrenaline right now. It takes about 2 miles into the race to calm down and start racing without the all of the butterflies and adrenaline, now it's just me and my bike.

I miss dearly all of the road trips, friendships and rivalries you develop with other racers, but most of all, I miss the racing. The butterflies and excitement before a race, the thrill of being caught up in the start and just the pure competition. Ahh, to be young and healthy again.

The two photos above are from off road races. The first photo is flat out in mud, most of you don't know what this feels like ... pure adrenaline rush. The back end is moving around on you with throttle pinned at 70 +mph. The second one, you really don't want to hit a deep water crossing and get soaked just starting a race ... that's why clubs put water crossings at the start. LOL

Thursday, August 20, 2009

Not Too Significant

I started a new post this morning but went to bed before finishing it. When I awoke this afternoon, I had 3 messages from different people that I work with. I learned that a very good friend passed away this morning.

Her name was Janie and she was a young mother of two. She always had a smile on her face and would always come by where I was sitting at the start of the shift and say, "Come on, I don't have all day to wait on you". We worked in the same area so I would walk with her back to her area on the way to the pressroom where I work. Every once in a while I would give her a chocolate covered cherry and she would light up like I had really given her a big gift. It's odd how little things like that just pop into your head out of nowhere.

At times like this, I feel guilty talking about my trials with RA. Janie was several years younger than I and seemingly in good health. If she had any type of health problems, I didn't know about them. She never complained about anything, well other than work.

I will miss Janie. I know I will think about her when I start back to the pressroom and don't have her to walk and laugh with on the way. My thoughts and prayers go out to her family.

Sunday, August 16, 2009

It's Back

I had a rough night at work last night. I'm afraid my reprieve from my RA is coming to an end. I went to work at 6 pm last night with an extreme case of fatigue. Not the best way to start out a 13 hour shift, but I hoped for the best since I have felt good the past 9 days. With my job, one of my duties is loading 3500 pound rolls of paper into the carriage, then raising the roll up off of the floor about 3 inches and spinning it all of the way around checking the rolls for damage. We ran 62 of rolls of paper last night. This is tiring for a normal person, let alone someone with RA and a case of fatigue.

On top of that, we had a paper break losing paper in 3 ovens. To make a long story short, there was a lot of climbing up and down (3 story press I work on) to reweb the 450 feet of paper we lost in the crash.

Just when I thought things were calming back down, we ran out of ink and didn't have another barrel in the pressroom. Mike and Sean were at break, so I was elected to go to the ink room and try to locate another barrel of 6G Sage green. Doesn't sound to bad right? The plant I work at has 13 acres under one roof and the ink room is a good six minute walk. Coming back I was pushing a 450 pound barrel of ink with a steel drum truck that I'm pretty sure was made before world war 1.

I had good intentions of working out before crawling in bed this morning. My feet hurt so bad, I slowly exited my truck, limped up the sidewalk, eased inside and hit the recliner, not to move again until I limp down the hallway to my bed.

Yes, my RA is back and I still have 4 more nights to work this week.

Friday, August 14, 2009

A Vacation From RA



I checked on a friend this week who had not posted on her blog in a while and made the comment to her, "I hoped you were out on a cruise ship dancing, laughing and having a good time" or something close to that.

That got me thinking, wouldn't it be great to get a group of fellow RAer's together and take a week long cruise. No work, no worries and most of all no pain. Well, I can dream can't I? I have met many fellow RAer's online, but would love to meet face to face, sit down and talk with and really get to know you. We have blogged and hurt together, why not spend a few days laughing, shopping, dining and even dancing together.

If I were in charge, the cruise would look something like this. (See ad above)

You are to leave all joint pain and flare ups on shore when boarding. If you insist, some minor swelling will be permitted on the boat, but no whining, crying, bitching or moaning about it!

The menu will consist of all of the items we should avoid like:
Cheeseburger and Fries
Pizza
Banana Splits
Nacho's
Pancakes and Bacon
Hey, we have the rest of our lives to eat right.

Activities will include all of the normal cruise activities:
Dining
Dancing
Sunning
Swimming
Spa with massages
as well as some new RA specific games and activities:
Name that pill.
Beat the crap out of the incompetent rheumatologist * (only 1 punch per guest will be permitted every 8 hours - no baseball bats please)
Wheelchair races around the top deck (no electric chairs permitted)
Canned goods pick up race with a grabbing device.
Hoveround Wheelchair Joust (combatants will mount their respective Hoveround 30 feet apart and on command will race toward each other wielding a Deluxe Oak Cane. The match will be over when one of the combatants requires medical attention or is accidentally knocked overboard.)
* One incompetent rheumatologist will be selected for the cruise from your nominations when you turn in your deposit for your reservation. The rheumatologist you nominate must be from your own personal experience, you cannot nominate a rheumatologist that you have not had doctor/patient contact with.

Well, you can obviously see why I'll never be in charge of anything. I still think we would have fun though.

Thursday, August 13, 2009

Laughter and RA

I have always used humor to get me through the day. I make fun of myself, others I'm close to (that I know aren't offended by it) and situations I am in or could be in. It has been something I have done all of my life, my way of dealing with certain situations.

Just three weeks ago, we had a severe thunderstorm pass over us at work with heavy rain, winds that blew trees down in the area and serious lightning that struck a house and set it on fire. The press that we work on has to be shut down anytime there is lightning in the area, to make a long story short, the power grid our plant is plugged into sucks. Anyway, we were cleaning the print cylinders while we were down and one was stuck on the intermediate. As Coop started knocking the print cylinder off, we developed a very high, shrill air leak. Mikey absolutely froze and yelled "Tornado" and pointed to the emergency siren in the pressroom. Mike (close friend I work with) and I just started laughing hysterically about it, and after realizing what it was Mikey started laughing too. Since then, anytime I hear a shrill noise I yell "TORNADOOO". Now, everyone in the pressroom is doing it.

Researchers released information from a study about laughter and RA in 2006. Turns out, I may be doing something right after all. Researchers have found that a good laugh has a positive effect on the immune response of patients with severe rheumatoid arthritis

The article I ran across can be found here. If you don't have an account with Medscape, you can go to Google and type in "Laughter and severe RA" and it will be the first result returned, you can click on it and go straight to it this way without having to log in.

Even if it doesn't help, I will keep on laughing. Like I said earlier, it's just my way of dealing with things. But I know I do feel better laughing vs feeling depressed or mad about something.

Wednesday, August 12, 2009

In The Words Of James Brown "I Feel Good"

I feel good. I like saying that, I just don't get to say it truthfully too often. I often tell people that are casual acquaintances or fellow employees at work that "I am fine" or "I am doing good" because
1) I don't want to go into a 3 minute explanation of how I really feel.
2) I don't want to go into another 4-5 minute rationalization of why I don't feel good.
3) Most of them don't really care that much to begin with, they are just being polite.

But suddenly last Thursday, after a severe storm passed through the night before, I felt noticeably better. After working 12 hours Thursday night, Friday morning I felt even better. Hey, I could get use to this feeling. I went on a 60 mile dual sport ride Saturday and felt great riding and good afterward even after all of the jarring around you take from offroad riding.

I have worked out both cardio and weights everyday since this past Friday and it feels so good I am starting to look forward to my workout time again. I am by no means completely pain free, however where I have been living with a pain level of 3-4 up to a 7 most of this year, I welcome a 1 to 3! I still have some minor swelling and pain in my hands daily, my feet have severe damage in them and always hurt, but the rest of me is jumping up and down for joy ... that is if I could stand to jump up and down.

Well, I am going to cut this post off, go workout and then jump in the hot tub for a while. After that I am going to bed, I just finished a 12 hour shift last night, and I am still smiling about it.

Sunday, August 9, 2009

A Great Day



My cousin Scott and his son Kaid drove down from Farmington early Saturday morning to go ride with me. I was excited because I don't get to see them much and also, Kaid and I had been cooking this ride up for nearly a year. Kaid is 13, big for his age and although he has been on a bike or 4 wheeler since age 4, he had never ridden in the woods. That is all about to change today. Scott has 2 street bikes and a 4 wheeler but no dirt bike so he will be riding one of my bikes today.

I spoke with Scott on Thursday about the ride and got a feel for what Kaid's riding ability was. After speaking with Scott, I laid out a dual sport loop for us, based on Kaid's riding ability, with a difficulty degree of a strong 3 to an easy 4. We unloaded and Kaid was all smiles while getting dressed. We warmed the bikes up and headed up the hill. Once at the top of the hill, we were not greeted by the turkey's (only about the third or maybe fourth ride this year that we have not seen them) and quickly scooted across the top of the mountain. The descent was a different story though with Kaid in between Scott and I, we started off the mountain after I gave him some quick riders advice. Switchbacks, deep ruts and washouts, but Kaid acted like he had rode them all of his life.

We jumped onto some single track and this was to Kaid's liking as well. He rode exceptionally well for his first time out in the woods, but I didn't want to wear him out or make him so sore he didn't want to come back to ride with me. We logged 57.2 miles, jumped 2 deer and saw 3 snakes. As we were loading up I looked over at him and he was grinning even bigger than before we started the ride.

On the way back into town, we stopped and ate a cheeseburger in Midland. There was a super cute 18 to 19 year old girl waiting on us. Scott gave Kaid the money to go pay for the burgers and he brought back $2 change. I added $2 for the tip and told Kaid to take it up and hand it to her and ask for her phone number. He quickly got embarrassed and told me he couldn't. She came back around to ask if we needed anything else and left. I elbowed Kaid and said, "she wasn't looking at me or your dad", then I told him, "at least write your name and phone number down on the top dollar of the tip for her. He told me he had a couple of girlfriends, to which I replied "I bet they don't have their drivers license and own car though". He wouldn't do it, I don't understand him, she was giving him the big eye, but it's cool. I'll just have to work on him a little more next time we go ride. All in all, a GREAT DAY.