Somedays ... I Just Can't Win

We have had an absolutely dreary winter this year.  We have had the most sleet, snow, days below freezing and heavily overcast days since I have lived in Fort Smith (25 years).  Our average snow fall here, over the past 25 years, is 2.15 inches per year ... we have had 19 (at our house) this winter.  That means that my RA has been more active than normal this winter as well.  We went 13 days in February without seeing the sun.  We normally have 3-5 days through January and February that hit up in the 70's ... you could count on one hand the number of days that hit 50 through those 2 months this year.  I was told by someone that they thought I had seasonal depression or winter blues.  Seasonal depression is a mood disorder in which people who have normal mental health throughout most of the year experience depressive symptoms in the winter or, less frequently, in the summer, spring or fall.  I don't know about all that, besides its not like I've never been accused of being mental before, I just want to see some sunshine dammit!


Saturday is the day I have been waiting for.  I am off work, the sun will be out, the high temperature is supposed to be 50, which is border line on riding vs hurting for me.  I don't care, I am going Saturday.  Friday morning I drained the old, stale gas out of my bike and replaced it with 3 gallons of fresh 91 octane fuel.  I lubed the chain, zeroed out my odometer, checked my spokes and tire pressures, talked with Randall about where we would ride today, packed my forrest maps in my back pack and got my gear bag packed.  There, I'm set to go Saturday morning now.

Overlook from trail taken on a ride last year (where we're riding Saturday)

Late Friday afternoon, out of the blue, my left ankle starts hurting so bad I can barely walk.  I get up and attempt to walk it out, thinking (hoping) it is just a catch in it that is preventing it from bending.  Oh no, nothing that simple.  It gradually gets worse and is hurting more by 6:30 Friday evening.  NO!  This cannot be happening tonight, I'm riding tomorrow!  By 8:00 my flare has hit both wrists, my right elbow and right shoulder.  


So I sit here at the computer today, enjoying my flare and the sunshine from inside.  I just climbed out of the hot tub and applied some Voltaren Gel to my knees and hands.  Guess I'll kick back and watch a movie this afternoon.  Well, at least Randall, Darel and Race got to enjoy our first good day of the year.  

Voltaren Gel Product Review

I don't do product reviews but I want to share something I recently have had sucess with.  Voltaren Gel is a prescription NSAID (non-steroidal anti-inflammatory drug) treatment that can be applied directly to site of osteoarthritis pain.  Since Voltaren Gel is an NSAID, it carries the same risks, there may be increased risk of serious or possibly fatal cardiovascular events, heart attack, or stroke with use of Voltaren Gel.  I was not familiar with this product 3 weeks ago, but have grown to like it.  I first thought, it's just a prescription BenGay, but since I have some osteoarthritis in my knees from football and racing, I gave it a try.  It is not a miracle cream, but I did notice almost immediate pain relief in my knees.  


Although it is specifically for osteoarthritis, I did try it on my hands and noticed relief from my RA.  As it states on their website, it is for knees and hands. It has not been evaluated for use on the spine, hip, or shoulder.  Voltaren Gel claims to be the only prescription topical medication proven to significantly reduce osteoarthritis pain in both the knees and the joints of the hands 


Voltaren Gel was shown to significantly reduce pain in hand and knee osteoarthritis, with pain relief sustained through the end of treatment. After 6 weeks of treatment in a study of patients with osteoarthritis of the hand, results showed that pain levels were reduced by 46%. In a 12-week study in patients with osteoarthritis of the knee, Voltaren Gel showed a 51% reduction in pain. 


If you are interested, you can check out their website here:  Voltaren® Gel


To me, these numbers are staggering.  A 51% reduction in pain, who wouldn't want that?  I will leave you with this, I don't know about a 51% reduction in pain for me, but I can positively say it does reduce my pain.  As all of you with any type of chronic pain know, any pain relief is welcomed.

Orencia ... Maybe Not For Me

Last week was a very hectic week for me. It started with my first day off last week ... the hot water hose that runs to the washing machine blew.  We had planned on going out of town but opted to stay home.  I'm glad because in the short amount of time to cut the water off, roughly 90 seconds, there was already a half inch of water in the utility room that was running out into the kitchen.  After getting the utility room dried out, buying new hoses and straightening the utility room back up, it was time for bed.

I got up Tuesday and went for my Orencia infusion.  The infusion's usually don't bother me too much, however this one kicked my butt.  I came home and was so tired, I thought I would lay down and take a quick nap.  I slept 5 hours, got up and ate a sandwich, watched some tv and went back to bed at 9 pm.  I slept 12 hours and woke up Wednesday pain free, but so fatigued, I could barely put one foot in front of the other.  I talked to my rheumatologist Tuesday, while getting my infusion, and told him that I had noticed right after an infusion the first 2 weeks I felt great with no pain and little fatigue.  Much better than I ever felt on Enbrel, however, the 3rd week it was wearing off, pain and fatigue were noticeable.  But on the 4th week, I was just hurting all over.  I asked him if this was normal and he said no, but some patients do react to it in this manner.  He suggested that I give it 2-3 more months (this is my 6th month on it) and if after the weather warms up, it is still effecting me the same way, we will change meds.  He said we have a lot of options and there is no sense in hurting half of the month.

I worked my normal 4 days last week (Thursday - Sunday 12 hour shifts) and this week I got moved to the front of the week so I am working Monday - Thursday.  That will be 8 days in a row.  I can make four 12 hour days ok, but I wear down a little bit more as each day passes.  By the 4th day, I am often in pain and fatigued, but can make it.  I don't know what I am going to feel like by the 8th day in a row.

The only thing keeping me going right now is that we have snow coming Friday, but Saturday and Sunday it will be in the mid 50's.  At last, I can get back out and ride.  Randall and I have mapped out a long dual sport ride that we may attempt to ride this weekend.  

Somedays I'm Just Numb

I have now been on Orencia for 5 months and can tell a big difference from last year after the Enbrel quit working.  I  am probably feeling about as good as I ever will with RA, still by no means "normal" when compared to healthy people.  I would love to be able to put some running shoes on and go for a run before heading to work, or hop on my Cannondale road bike and put in a 50 mile ride again with Mike.  But, I know thats not going to happen, so I just don't think about that part of my life anymore.  I hear a lot of people talking about remission from RA, I am not convinced it exists.  Sometimes the fatigue and weakness that I feel is worse that the swelling and joint pain.  I hate the numbness, sometimes I am so numb that I cannot even feel happiness, I'm just going through the motions of life. I really hate that RA takes such a vital part of our life away from us, that we have to emotionally shut ourselves off sometimes just to survive day to day.  

I have actually had 2 totally healthy co-workers tell me that "they wished they had what I have". They would file for disability and quit work. Imagine being envied by a perfectly healthy person that can go do anything they want with no repercussions from your body. Bottom line, most people are just flat out ignorant about our disease.

Me 1987

In my younger years, I was never accused of being a cautious person. From rock climbing and repelling, I have climbed a couple of water towers (remember those things?), mountain bikes and racing motorcycles. Mike set me on fire one weekend, although he claims it was an accident. lol  Mike, Randall and I were nearly thrown out of a hotel at Tulsa once for having a mountain bike in one of our rooms ... well, ok, maybe it was because we were jumping the mountain bike up onto the beds or jumping the bike (attempting to anyway) over Mike's toolbox in the room.  

Mike 1987

I write about my RA because it is a part of my life now. I didn't ask for it, it just showed up one day uninvited. As much as I am determined to not let RA control me, I have to admit it has definitely changed who I am.  I still occasionally will think about what I would be doing if I didn't have RA. 

Arizona Sounds Good This Time of Year

It seems that everyone with RA has had problems with their hands this winter.  I am no exception.  Yesterday we received another 5 inches of snow and temperatures plunged back down into the teens.  My whole body ached yesterday, today is a little better.  Of course part of that is working 4 twelve hour days in a row this week.  Each day I get worn down just a little bit more until, some weeks I can barely move by the last day.  Average snowfall over the last 20 years in Fort Smith is 2.15 inches.  This winter we are already at 17 inches with more snow predicted Thursday into Friday.  If every winter starts doing this, I am packing my bags and heading south.  Every time I start feeling better, here comes more snow or plunging temperatures ... or both.  

On my last day of work this week, we were having a pretty good day on the press.  We walked into a bad paper break that the other crew so generously left for us to clean up.  An hour later we had the paper webbed and spliced and were jogging the splice through all of the opened nips and drives. Got the splice through, closed everything back up, turned the edge guides and ovens on and fired the press up.  We were running good paper, good print, a nice last day of the week.  Then along comes management.  I honestly don't know how management comes to some of the conclusions that they do, but they make some of the dumbest decisions (to us) that can cost us time, paper and quality.  We still managed to run 850,000 linear feet by the end of the shift in spite of them.

I have been researching iron truss bridges in Arkansas-Oklahoma, so if it will ever warm up, I have several already picked out to ride out to and photograph.  My new project Proud Iron is up and I currently have 7 bridges listed on it.   

I talked with Randall yesterday and found out Darel is trying to get in touch with one of his old riding buddies who lives in Arizona.  Darel is a self employed, take charge kind of guy.  If we can't ride here, no problem, we'll just move!  If all works out, in other words if it is cheap enough, we may pack up, take a couple of days off and head out to Arizona to ride for 2-3 days. 

Snow Rides

We had 7 inches of beautiful fresh snow Saturday.  My first day off this week was Sunday and I wanted so badly to load my bike up and go play in it.  When I was younger Mike and I used to ride in the snow every chance we got.  We would ride til our fingers were toes were red and hurting from being so wet and cold.  We would swing back by the truck, start it up and warm them up and put on a dry pair of gloves and head back out again.  I still have the want to (I guess I'll never grow up in some ways) but I knew the repercussions would not be worth it.  Even knowing this, I still started out the back door mid-afternoon to the shop with full intentions of loading my bike up and going out to ride in the snow ... just for an hour.  I sounded like a little kid whining to his mother to let him go out and play.  The bad thing about it is I was trying to convince myself to let myself go play.  This is where it gets confusing, bad self convinced good self that we would be fine for just an hour of riding.  I opened the door and the 30 degree temperature didn't feel that bad.  Ok, I go to the garage and get my ramp, tie downs and gas can out ... next I pull the choke on the carb and hit the electric start.  The KTM fires off and is as excited to be going as I am.  Next I get my backpack and goggles ready ... I'm noticing it is feeling much colder in the shop after being outside for 10 minutes.  I raise the garage door to load everything and I'm hit face on with a 23 mph wind on a 30 degree day.  Good self took back over, I shut the door and went back inside the house.  

Mike called Monday and we talked about riding in the snow. I told him that I had found some old photos of us riding at Lake Weddington in the snow and he said that he had just ran across some of us snow riding.   These are from around 78, that is me on a Yamaha YZ 125.