Sunday, July 31, 2011

Chronically Awesome

Living with a chronic disease means we have to work harder at everything than normal healthy people.  It takes more from us to simply get out of bed in the morning, exercise, do our job but this also includes having fun. My riding is no exception. I do not ride pain free, however the thrill I get every time I ride far outweighs any pain I experience. Once it cools down to where I can enjoy riding, Donna may not see me til it starts snowing. My daughter informed me yesterday that we have been over 100 for 27 consecutive days now.  The forecast for the next 7 days ... over 100 everyday.

I saw my rheumatologist two weeks ago and told him about being off of the MTX after surgery (for quicker healing) and I noticed that I felt better, had less fatigue and more energy.  He was excited and immediately suggested I try just the Humira and stop the MTX altogether.  I was a little leery of this so we agreed to cut the MTX back from 5 pills a week to 2.  I have to admit that over the past 2 weeks I have had more energy however it seems that I have had more problems with stiffness and pain than I normally experience.  I am hoping it is just a coincidence, but I am afraid I am going to have to start bumping the MTX up a little to find where I need to be to balance pain and stiffness vs having less fatigue and more energy.

I spent most of Saturday with my daughter.  She took some photos, she is in the early stages of starting her own photography business, of me for a magazine interview I did with Health Monitor about staying active while living with RA.  I am very lucky that, so far, I live with a mild version of the disease and that I CAN stay active.  Living with the disease varies greatly from one to another.  I think this is something that most outsiders do not understand.  Just because I can exercise and do some things that help me doesn't mean it's right for everyone.  

I am nearing the completion of my dual sport conversion, check out my 525 Bike Build link for all of the details.  Still have just a couple of things left to do to it.


Anonymous said...

Wow, you ARE chronically awesome! Pretty handsome bike and guy there! You do amaze me with all you do.

Good luck with getting the mtx thing worked out. I assume you're taking prescription strength folic acid every day for your methotrexate? For some that makes a difference in the fatigue.

Do you get many other side effects with mtx? I'm lucky I don't. My rheum just upped mine to 25mgs, but told me to split the dose and take half on Monday nite and half on Friday nite. It has made a huge difference in my pain levels - even in joints that are supposed to be just OA, which has amazed me. But that split dose along with plaquenil has really made a difference, and I've been taking mtx for over ten years. In fact, I was finally able to taper slowly off the prednisone that I've been on for over ten years also. But I am noticing some low level but sure RA activity in wrists/hands/feet since getting off the prednisone a few weeks ago. Not really bad yet though.

Energy/fatigue - think I'm so used to it that I don't know whether to attribute it to mtx or not, but it's not as bad as it used to be despite being on higher dose.

Anonymous said...

PS - it can sometimes take six to eight weeks for the effects of the the mtx to wear off if you do try to stop it.

tharr said...

Hey Chelsea, no, I'm not chronically awesome, I feel chronically awesome. But thanks!

I upped my MTX from 2 to 3 this week and just 3 days later feel pretty good. I do take Folic Acid also.

When I first started it (taking 7/week) I felt a little bit of the nausea. I was cut back to 6/week and it either did the trick or my body had gotten used to it. My hair has thinned out a lot but after taking it for 8+ years I am amazed I still have any hair at all. Keep an eye on your RA activity, don't let it get out of hand on you.

I hate the fatigue, we have the fatigue from the disease itself plus all of our meds list fatigue as a side effect. I have had many days where the fatigue was worse that my pain.

Lana said...

I think MTX zaps our energy. I take my six tablets on Friday night because I can’t risk during the work week. Please let us know where to find the interview – how exciting! You are precisely right about luck- I consider myself lucky too as my RA is pretty moderate (as I have been told). However, it still limits me because I am affected more than just by the pain. I will check out your link. Happy riding, my friend!

tharr said...

Hey Lana, it sure does (MTX zaps our energy). I increased to 3 this week and have had a pretty good week so far. The swelling is better, still some stiffness, I'm hoping it may have something to do with our extreme temps over the last 5 weeks.
I am so ready to ride if it ever cools down, by the way, Wednesday at 5:31pm, at the Fort Smith Airport (one of my coworkers gets his local weather data from there) it was 117. That is actual temp, not a heat index.