Wednesday, February 24, 2016

Winter 2016 ... Mild One But A Rough One

Nicole at Healthline sent me a link that might prove useful. If it can just help one person it makes it all worthwhile. 7 Tips From People With RA :  http://www.healthline.com/health/ra-stories 

It's been a long while since I have posted anything. I have had a couple of people checking on me and I do appreciate it. I am doing better on the Actemra but it has knocked my immune system back to where I have caught everything that has come along this winter. I had the stomach flu mid January and thats the hardest anything has hit me in a LONG time. At one point, with the exception of running to the pot to either sit on it or stand over it to hurl, I slept 35 hours straight. I have also had a sinus infection, a common cold and just as I thought I was about to be semi-normal again ... BAM, bronchitis!

Through it all though, my RA has been pretty well managed and I am thankful for that. With the exception of my work days, I average 24,000 steps per shift on work days, I am doing well. I have less fatigue and reduced joint pain. I'm also sleeping better through the night and that is a big help. Any time you can get up feeling more rested in the morning just means your day is going to be a little easier for you.
 
Then there's that moment when you open a letter from your health insurance company and have been turned over to a claims research center for treatment for "severe pain in your joints". No sh**, I live with serious joint pain every damn day. Haha, I thought that the rheumatologist after my doctors name combined with joint pain would be a dead give away but that just shows how much I know! The crime is my health insurance is going up every year more than my cost of living! Don't see anyone investigating that though. When the lady with the claims research center found out that it was for treatment of RA, she immediately apologized and told me that she was closing the case out. I understand there is a lot of fraud on both sides of the fence with insurance companies. What set me off is that I have been treated for RA now (same insurance company the entire time) for over 12 years and been using the same doctor for over 11 years ... and now they are going to question it?
 
Temps have been pretty good but I have only managed two rides so far this year but that will change soon. I have a ton of bridges and a few ghost towns in Oklahoma bookmarked along with three weeks of vacation. I got to ride with Greg and my old racing buddy Mike a couple of weeks ago. We rode down to and over the tunnel on I-49. I thought it was going to be a photo op but it was more of a big let down than anything. It was so grown up with trees and fenced off so you couldn't get closer for a better photo.Greg and I are going back up there when it warms up, he saw the train trestle out of Winslow. We both want to get some photos of that.

From on top of the Bobby Hopper Tunnel over Interstate 49

Friday, December 25, 2015

My RA Advice To You


I have lived with RA/RD for 13 years now. I have run the gamut of emotions while putting up with my jackass friend. Determination, hate, sadness, pain, anxiety, stress, etc. It's frustrating (yet another emotion) that in this day of information at our fingertips, most people still think osteo and rheumatoid arthritis are closely linked. The one thing I have not done is give up. At first I was full of energy and commitment to beating this disease. I have tried numerous diets, OTC meds, every witch doctor remedy from do good friends and the internet, workouts (I still walk every day and do a mild dumbell workout on days I am able to), hot showers, cold showers, and so on.


 

Through it all I only have one simple piece of advice to offer anyone living with this disease. Enjoy every good day you have to the fullest. You may not be able to do what you once did but that's alright. Don't fight the bad days, the important thing is to not give up* and let RA/RD win.
*Giving in on bad days and resting or sleeping is not giving up.

I got the bike out and did a short ride two days before Christmas. It was 69 degrees and I was feeling ... just ok. But I was not going to let a gorgeous winter day keep me inside. Once out, I began to feel better, riding has a way of doing that for me. I did a short ride that took me up into the edge of the Ozark National Forest. Despite all of the rain we have had, the dirt forest roads were pretty dry. On the way back into town, I stopped to visit the old abandoned Colonial Motel.
 
 








 

Wednesday, December 16, 2015

Moonshiner's Cave


I was supposed to meet Greg at 10am Tuesday morning to ride out to Devil's Den state park. That got pushed back an hour due to a furniture repair guy running late. When we finally did head out on our way it was 11:30 ... not the kind of start we were looking for. We had the possibility of rain moving in late afternoon so we wound up slabbing I-49 for about 20 miles. Again, not the way we wanted to get there but hey, at least we're riding today.
Once off of interstate things started to get better. We were in search of an old cave in the Ozark National Forest. Soon we found the sign and parking area. It took walking down 3 different trails before finding the right one. We had some directions but they turned out to be about as useful as a can of dinosaur repellent.
It was not a brutal hike but not easy either ... at least not for a fat old man with rheumatoid arthritis. Up and down hills strewn with rocks, ruts and vines. I was also hiking in motorcycle boots (not a good move on my part). We hiked, tripped and slid our way through the forest before finding a small waterfall. After taking pictures we hiked east of the waterfall and there it appeared before us in all its crude but glorious state ... Moonshiners Cave. We spent the next hour taking photos from every angle you could take. After exploring inside and out, on top and down below, we finally started the long hike back out.
Once back on the bikes, Greg wanted to stop at Artist Point to get some of their spicy mustard. We also had to check in with Corky, the resident Cockatoo and he was in rare form today. Dancing, strutting, whistling and talking ... and throwing the ink pen in the floor. He's hilarious and works for the attention he gets.
It was heavily overcast and turning darker as we left Artist Point. We lit the throttle up and just beat the rain back home. It was a good day and yes, I'm paying for my fun now, but it was worth it. 

Getting ready to hike to the cave.
Small waterfall on the hike to the cave.
Moonshiners Cave

View of waterfall and front of Moonshiners Cave.

Front door plate says 1905.

The hike back out was long and steep for an old fat man with RA in motorcycle boots!

Meet Corky

Monday, November 23, 2015

Life (With RA) Hacks

Life with RA is a roller coaster ride. While I'm not at the top, I'm at least not at the bottom right now, and I'm thankful for that. You look at things differently after living with this stuff for over a decade. While, despite aggressive medical therapy, I hurt everyday. I still work full time, while a lot of people who have their health wish for disability. I know because several have told me they wish that they had what I had so they could get on disability. Ha ... if they only knew how much it hurts. I don't complain and perhaps it doesn't seem bad to them, but trust me ... it's not for the weak.
I still work on and ride my motorcycles most anytime I want, just not the kind if riding I would like to do or the kind of mileage I was doing just three years ago. But ... I'm still riding and that's a good thing.
Part of living with a chronic disease is adjusting your attitude and lifestyle and continuing to do what you enjoy the best you can. Sure, I could be mad at the world but it only makes things worse. At my rheumatologist office I talk with some bitter people but most (many far worse off than I am) have an amazing outlook. Your mind is a powerful weapon in living with this stuff ... use it to your advantage.
Nicole at healthline.com sent me a great link with tips for making life a little easier. Surprisingly I was already doing several of them.
 

Thursday, October 29, 2015

Thank You Actemra

 I just finished my third Actemra infusion Tuesday and I'm feeling great. While it's not a miracle drug, I still hurt every day, the pain, swelling and fatigue are much less. For the first time in almost a year I feel like riding again. If I would have known I would have these results, I would have switched in early summer before we went to Colorado.
I am now going to finish the suspension mods on my bike this fall (gold valve emulators and a fork brace ... maybe a steering damper also) and ride the wheels off of it. I have a long ride planned with Randall next week and I can't wait! To put it simplistically: it feels good to feel good.
 
 

Monday, October 19, 2015

Actemra Seems To Be Working (for now)


Forgive my absence since my last post. I have been adjusting to a new work schedule, new meds, getting prepared for a garage sale and most importantly ... riding. For the first time, maybe all year, I feel good enough to want to ride again. While the Actemra is not a miracle drug, it does have me feeling better. I still have serious stiffness if I sit for too long, a little stiffness and aches when I get up in the mornings but joint pain and fatigue are both less (still there on both counts though). Living with RA is a roller coaster ride, right now I am enjoying the ride back up for a little while.

I met my long time buddy Randall last Tuesday morning to go for an easy ride. He survived a life threatening crash (broken shoulder blade, 7 ribs broken, punctured lung and pierced spleen) around the first of August and is just getting back to work and riding so we had an easy ride planned. Besides I had some above average hand pain so a short ride sounded good to me also. That changed when we met up and he decided he wanted to test himself a little. We rode the Devil's Den loop, about 140 miles although quite a bit of it was asphalt. We hit the dirt part of AR220 and were bewildered to see them widening, replacing low water bridges and preparing to chip and seal the 12 mile stretch of one of Arkansas's only dirt highways left. It was a beautiful ride across the narrow, twisty hills that comes in to the back side of Devil's Den state park. We rarely ever see a vehicle on this road as long as we have been riding it. In fact, other than the construction workers, we didn't meet a single vehicle on our ride Tuesday across it. It just seems like the state could put the money to use on a better project. 

We stopped on top of Mount Gaylor on the way back in and walked around looking the place over. It was once a busy booming place but now sits abandoned on a lonely highway that very few people drive anymore. I have climbed the tower a couple of times, it now sits locked up with the treads removed so no one can enjoy it. The old 2 story gas station sits across the road form where the restaurant and gift shop once was. The small building just north of the gas station was the train depot, a small train used to run around behind the tiny lake they had and into the woods for a short ride for the kids. Randall was telling me that his grandmother ran the train for them back in the day. It was a nice place ... progress isn't always a good thing.









Wednesday, September 23, 2015

Now Up ... Actemra

I started a new class of treatments for my RA at the first of this month. I am now trying Actemra infusions and I am cautiously optimistic that they may work for me.
It will simply take time to verify that it will or will not work. I always feel best in the fall and have less pain and aches during this time due to the mild temps and mostly dry climate where we live..
I have felt good since taking the first infusion up until this past weekend. Over the weekend I did a ton of yard work and got less rest than I normally do plus we had rain and storms all day Sunday.
I go in next Tuesday for my second infusion. It will be normal strength for the infusions. My first treatment was half strength. For now I'm just hanging on and hoping the Actemra works for a while.

Saturday, September 12, 2015

Salida 2015 Part 2


The long car ride out to Colorado woke up my RA. I started my bike and just checked out the area around our cabin on our first day there. We had a nice 2 bedroom cabin with air, full kitchen, wifi, satellite tv (like either one of us were going to watch tv) and you could step out our front porch and see the Arkansas River. 

I rode 153 miles on the second day (first full day of riding). But my RA was making itself known on the ride back to the cabin. I stopped twice to get off of the bike and walk around for a while. This helps when my hips, knees and shoulders are hurting. A quick 5 minutes off of the bike works wonders for a few miles before the pain start creeping back in. I pulled back in to our cabin fully expecting to get back out and go for a short night ride but that didn't happen. I did sit out on the front porch and eat a sandwich as the sun went down. I just didn't feel up to getting back out tonight. It was soon cool enough that I had to put a sweatshirt on. I could have listened to the river running all night but retired back inside shortly. 

After a good nights sleep, I was ready for another full day of riding. The only problem was my jackass friend RA was also. I headed south to photograph two old iron bridges I had spotted on our way to the cabin. I looked it up on the internet and it was on County Road 6. I found it quite easily and as I turned onto the road, I was greeted with a Private Property sign. I knew it was a county road so I thought the sign was just telling you to stay on the road and not get off onto the land. I found the bridges and had taken a few pictures when a truck pulls up behind me and instructs me to leave. I was not happy ... I know this is a county road but I also know I am in the middle of no where by myself with an angry man and Donna has no idea where I was riding today. I decided it was best to not push the situation, turned around and left. Up til now everyone in Colorado had been super nice and friendly. I wasn't about to let one jackass ruin my ride today though. I jumped on some dirt roads and at one point rode next to the Arkansas River for miles. 

I rode back around town and came in the back way (one day of riding through the chaos was enough) and rode up to the old smelter. They had chain link around it with no trespassing signs but it was pushed over. I wanted to go around back and see if you could get inside. I was sure all of the old equipment was gone but I still would like to have seen inside. The problem was there were 3 guys working in a field next to it and one kept watching me. Again, I didn't push my luck. Actually my luck is the guy watching me was the police chiefs brother!  After leaving here I wound up above the tree line and had a great day riding again.

I finished the day with a little over 100 miles but major league pain from my RA. I went back early and took a hydrocodone and a hot shower. I don't normally take anything for pain unless it's severe. After the second day, it was severe. I don't honestly know how much longer I can ride but I'm not planning on giving it up any time soon. If I can just ride 50 miles a ride before hurting, I will still ride 50 miles. Sure it hurt me but looking back on these moments, on my bad days, is what keeps me going. I have said it before ... riding is my therapy. The day I can no longer ride and get rid of my bikes is the day RA has beat me.
Pair of bridges south of Salida.
Bridge that I was run off from. Note Private Property sign attached to bridge on CR6.
Old smelter just outside of Salida.
Smelter that I wanted to get inside of but decided against.
Smelter stack is 365 feet tall.
Old mine.
Abandoned cabin by Cumberland Pass.
Arkasnsas River.
The railway up Pikes Peak.
Bighorn Sheep on Pikes Peak.
Royal Gorge
Royal Gorge view riding the gondola across.
Above the tree line around the Alpine Tunnel.