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 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.

Wednesday, August 26, 2015

Salida 2015 Part 1

We left out for Colorado at the crack of 5:30pm last Wednesday. I got off work at 7am that morning and Donna was going to get up early, get the trailer and pack everything while I grabbed about 3 hours of sleep. She was called in for an emergency surgery and slept til noon. But it doesn't matter ... I'm on vacation!  

It was a grueling car ride out that had us pulling up to our cabin at 7:30 the next morning. The temp was a brisk 44 degrees when we arrived. A quick unload and we both grabbed a couple of hours of sleep before wandering downtown Salida ... the site of Mumford and Sons Gentlemen of the Road stop over that Donna was there for. We walked all over taking in the vendors and merchants on F Street. Stopped in and bought a shirt and visited with Duke form Fat Tees and ADV Rider (does the t-shirts for, great guy. 

A quick note that despite taking steroids and half a hydrocodone over the past 3 days, my RA wasn't sure what was going on but it did not like it. But I did not drag my bike 13 hours (one way) to not ride it. I was riding whether my body and RA liked it or not!

My main goal was to have some fun, see some new stuff and not leave any dismembered, ... more to the point MY dismembered body parts on the roads or trails. After hitting the electric start, I'm off. First stop was to program my GPS (I was so excited to ride that I forgot to turn it on) and I had to pee ... I think I had gone all of about a half mile. As I make it to Salida, I cautiously pass through the chaos that we had strolled through the day before. Exiting the small town I ride by the hospital (I hope this isn't an an omen) and just on the other side is a tall stack that stood out against the deep blue mountain back drop. I would have to check this out later if I have time. 

I rode on forest roads toward St Elmo then turned and rode up north of Buena Vista. Up here I rode through four old train tunnels. Wow! The tops of the tunnels were still black with soot from the train engines decades ago. I walked around photographing and exploring the area for over an hour. The trains run just below the old tunnels now. As I leave the tunnels and head further north, I ride up on an old white Ford truck just crawling along the road. I politely pass him and am standing on the foot pegs cruising about 55 mph when I run past it ... a 20 mph speed limit sign! Are you kidding me? 20mph? On dirt? On a bike? What a crock, but okay ... I'll meet you in the middle. I slowed to 40mph and rode on til I found a RR bridge over the Arkansas River. While taking photos and walking across the RR bridge, I meet a man and his wife coming up to do the same thing. We talk for a moment and he asked how I'm doing. I replied, great ... I'm getting paid for this and before I can get out that I'm on vacation (getting paid), he excitedly says "that's awesome, I would love to do something like that!  At this point I didn't have the heart to tell him I just meant I was on paid vacation. I left him and his wife at the bridge thinking they had just had been talking with a moto journalist. Bwahaha!

I will leave you with some photos and finish up my next post.
Hard to look cool putting your bike in a uhaul motorcycle trailer!
Our cabin we rented for 3 days right on the Arkansas River
F Street Salida for the Mumford & Sons stop over.
M & S logo in lights stood out at night on the mountain.
F Street again ... those girls had some long legs!
Side of building in Salida.
Knee viewpoint.
Affectionately called this BDR - big damn rock.
Trusty steed needed a rest.
Duke from Fat Tees in Salida, great guy and fellow ADV rider.
I got just a little bit lost up there. 
Endless dirt/forest roads.
Abandoned RR bridge next to Arkansas River.
My trusty steed. 
Awesome ... 4 old train tunnels pose for a photo. 
Out of use for decades yet you can still see signs of use on the ceilings.
Couldn't quit taking photos of the tunnels.
I know, I know ... another tunnel.
Somewhere between point A & B Friday.
RR bridge over the Arkansas River.
Same RR bridge from above.

Monday, August 17, 2015

Leaving In Two Days

MTX (chemo), check ... folic acid, check ... Humira injection, check ... Steroids, check ... hydrocodone, check, all of this medicine just to go on vacation and try to maintain my RA to a bearable level. 

I have my bike prepped for Colorado, my gear bag packed with every combination of stuff to wear depending on the weather. It may look like Stevie Wonder picked out my riding ensemble some days but I don't care ... I'M ON VACATION!! I also have my Phantom 2 packed and ready for action. Updated the GPS and added a few routes for up there. I can remember when I use to ride without maps or GPS, would get lost and then find my way back out. Now I'm high tech, riding with a GPS to get me lost then find my way back out. I hope to have some good photos to post after we get back.

My long time friend, riding buddy and ex-racing buddy Randall had a serious crash this past Tuesday. He will be in the hospital for a while. He broke 7 ribs (4 of them twice), his left shoulder blade, punctured a lung and pierced his spleen. I spent part of Saturday with him and he was in and out from the pain meds. He is slowly improving though, it will just be a long road ahead before he is back to work and riding again. Please keep him in your prayers.

I start Actemra when I get back from vacation and am looking forward to it. I usually dread changing meds but I am anxious to see if I can feel any better than what I have endured this year. It may be the progression of the disease and if so ... I will have to accept that but you know me. I'm not giving in til I have no other options.

Saturday, August 8, 2015

Pneumonia In Summer

Perhaps I was looking forward to vacation a bit prematurely. As I posted about vacation, I was feeling a bit under the weather. At one point, I slept 35 hours out of a 40 hour stretch. When I finally got in to see my GP, I had what I was afraid of ... pneumonia. After a big ass shot of rocephin Thursday, a weeks worth of antibiotics and another big ass shot of rocphen Friday, I finally started feeling better. I was actually thankful to be back at work ... man, that's just messed up!

With all of this unnecessary comotion going on, you would think my RA would be content to take a back seat while someone else was driving. OH NO! My jackass friend RA, decided it wanted to share co-honors in the "let's screw T's week up" hijinx. The worst thing it that being on antibiotics, I couldn't take my mtx for at least another week so I had to hang on to the pain train for longer than I wanted.  

I am now, officially ready for vacation ... no more side shows please.