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!