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.

Friday, August 7, 2009

Man, You Look Rough Today

I work 12 hour shifts standing and walking on a concrete floor or walking up and down stairs, the printing press I work on is 3 stories tall. Quiet often when I get off work at 7 am, after winding down for about an hour or so, I lay down dog tired expecting to get a good 8 hours of sleep. I have no problem falling asleep, but I will wake up several times through the day and usually two days out of the week, cannot go back to sleep. So usually one day a week, sometimes two, I head back to work at 7 pm with only 4-5 hours of sleep. As all of you with RA know, you hurt when you don't get 7-8 hours of good sleep, and I am no exception.

I get so tired of answering the same questions over and over again. It usually goes something like this:

Casual Work Acquaintance: Man, you look rough.
Me: Yeah, I didn't sleep very well today.
Casual Work Acquaintance: I didn't either, I just slept 5 hours today.
Me: That's about what I got today.
Casual Work Acquaintance: You don't look like you feel good though.
Me: I don't. I am hurting due to lack of sleep today.
Casual Work Acquaintance: 5 hours is pretty good sleep for me.
Me: Not for me with my RA trying to work 12 hours.
Casual Work Acquaintance: Oh yeah, I forgot. I think my xxxxxxxx (place assorted relative here) has that. He/she hurts a lot when it rains.
Me: Yeah, it can be pretty rough some days. (I don't even bother trying to tell them that is not what we have - it's not important enough for them to remember.)
Casual Work Acquaintance: Well, hope you get to feeling better.
Me: (smiling) Well, thanks but I probably won't. (Since when has walking 12 hours on concrete with steel toe workboots and climbing up and down stairs all night helped an RA patient after having only 4-5 hours of sleep.)

Now, I head out to the pressroom to do my job and wait for the same conversation, often asked by the same people, next week.

Thursday, August 6, 2009

New Way RA

There is a new online talk show, New Way RA, that deals strictly with the health and well-being for people living with RA. The show is hosted by Deborah Norville and provides practical advice and information for adults living with RA. Deborah and expert guests discuss and share information about relevant topics through a variety of segments, including: health, nutrition, fitness, relationships and work/career management. Visitors to the site can view the entire show online, listen to real-life anecdotes from people living with RA, register to receive a free copy of the DVD, and access resources for more information. The project is sponsored by Centocor Ortho Biotech Inc.

Currently, over 1 million Americans have rheumatoid arthritis -- 70 percent of whom are women.

I watched the first episode and expected it to be an infomercial for a RA drug since it is sponsored by a drug company, but was surprised. Personally, I am glad to see any type of show calling attention to and attempting to help people with RA.

You can watch the show and learn more at http://www.newwayra.com/.

Saturday, August 1, 2009

This Day Sucked

Thursday morning I spent two hours with my rheumatologist taking xrays, having bloodwork done and setting up a start day for new medicine. I still have to go back next week for a TB test. I am switching from Enbrel to Orencia. Switching from giving myself two shots a week to an office visit with a 30 minute IV injection once a month.

After that I went home and had to crawl around on the floor of my shop taking a steering link off of my riding nower. I then drove 80 miles north to my dad's house and cut and welded a new piece on the link, I don't have a welder at my house. On the way back we stopped and took my daughter out to dinner and visited. It was 10 pm when I arrived home and I was hurting so badly, I could barely walk from the truck to the house.

I got up Friday morning and was planning on taking the KTM out for a ride, but the pain was so great that I just laid back down. My feet, hands, left shoulder, hips and perhaps the worst of all, ... fatigue. It is impossible to explain the pain that Rheumatoid Arthritis imposes on us, to someone who does not have it. On a good day, I can do most of what I want to, but with pain. On a bad day like today, it is sort of like having the flu with four or five broken toes and a dislocated shoulder. Other than that, I felt pretty good!