Tuesday, May 8, 2012

Semi Normal Again


Well, I am back to my semi normal life.  No one living with a chronic disease will ever have a normal life again.  It is time for me to finally admit it ... I have struggled with this and kept thinking (wishing) that it was just circumstances at that particular moment.  Nope, it's not and it's time to face up to the fact that I am going downhill.  I am going back to my rheumatologist in 2 weeks so this is first thing on my list to talk with him about.  My hips are bothering me a lot and my right hand has been hurting with different degrees of swelling.  I don't know if this means an increase in my meds, switching meds or if it is just something I will have to live with.  
I rode last weekend and at the 100 mile mark my right hand was starting to hurt (not normal hurt - bad hurt).  I finished with 150 miles and my hand and hips hurt me for the next 2 days.  This has altered my vacation plans yet again.  I had originally planned to go to Colorado and ride part of the Trans America Trail but the long truck ride out to Colorado rendered me useless the first day on our last trip out there.  We decided instead that we would ride the Mississipppi Hill Country loop (2 day 510 miles) of the Trans America Trail instead.  Not only am I having problems, Randall's doctor switched his meds and he is having migraines more frequently as well.  We are still wanting to do the ride, just when we are both doing better.  We decided against this plan yesterday since both of us are having problems now but we don't know where we are going to ride now.  
I am also trying to come to terms with selling the KTM.  I can no longer ride it comfortably but I don't know if I can sell, hands down, the best motorcycle I have ever owned.  I know that I should, but I have put so much time into the bike build to make it what it is plus the horsepower and handling are unmatched by anything.  Mike is coming down to ride it while I am on vacation.  If he is still interested, we will go from there.

11 comments:

abcsofra said...

I am wishing that you find a solution to this "new" you. I just hate ra! But I love that you keep on fighting it the best you can and try to hold on to whatever dreams that you still can. I can't say whether you should sell or keep the bike, I don't know enough. But I do trust that your decision will be one well thought out and the best for you. Happy trails! Even if they are more local ones.

Wren said...

I'm sorry to hear you're having such a tough time with the RA these days, Terry. Semi-normal is better than bad, but I sure understand your frustration, particularly after having such a good, long run of only moderate symptoms. My twingy fingers are crossed that your rheumatologist will have some answers for you, and that you'll be feeling much better soon.

RA sure can put a damper on things. Hang in there, my friend.

Laurie Grassi said...

I'm sorry things haven't been going well, Terry. I hope you and your rheumatologist can find a solution soon. :) L

tharr said...

Thank you Deb. I hate RA too! I will not lay down and let it run over me though, I will keep on riding something. I think that my riding gives me something to think about and look forward to and is part of why I can keep going. Just being away from work is good, throw in a little riding on top of that and it will be a good week where ever we do ride at.

Wren, I love your slant ... semi normal is better than bad. You're so right and I'm fortunate that I can still do all that I do. I hope I didn't sound like I was feeling sorry for myself, I'm not, I have just been fighting the fact that I'm going backwards in my fight with RA. Hope all is well with you.

Laurie, thank you. I hope it might be helped with meds, we will find out in 2 weeks. In the mean time ... I'm going riding next week on my vacation!

Lana said...

Are you selling the bike or giving up riding all together? I hate to see you give up riding but I can definitely relate. I have been struggling with my hands because they have gotten weak and losing control of my hands to this disease is my biggest fear. But like you said, we might have to face the reality that RA might win. I am glad that you are getting back your normal and I hope that there are better days ahead.

tharr said...

Lana, just selling the KTM (possibly), have my KLR that I am setting up for adventure rides, a milder version of dual sport riding. That's the same problem I am having but only with my right hand. We have had mirror image problems lately. I am wondering if it might be the Humira or just weird circumstances.

Lana said...

Terry, maybe we sympatsize with each other too much. :-)

Squirrel said...

Don't think for a moment that you're 'feeling sorry for yourself'. We all need a moan sometimes and you do so much and work so hard that it's amazing you don't complain more often! I think seeing your doctor is a good idea, there are plenty of other meds to try and new ones coming out soon. You might get to do dual sport again, never lose hope!!

Anonymous said...

Terry
I feel much the same. The hips can really make you miserable when they are stiff and tender and the drugs only seem to slow things down a bit. All I can say is keep diong what you can and don't worry about things that you can't do. Rubber side down buddy , handg in there.

Phil - SYR

mary said...

We adapt and change, that is all we can really do. I think you and I are about the same age and it recently occurred to me that OA is starting to rear its ugly head. After 27 years of ra I realized that even if they cure it tomorrow I would now have to deal with the OA pain....sigh. BUT we adapt and change. You are doing a great job of adapting your riding. Enjoy the warm weather and I hope your doc can come up with something to lighten the load. Hang in there.

tharr said...

Lana, we probably do, however our pain is very real.

Thanks Squirrel. I am hoping there is a simple solution to my regression and that it can be turned back around. I'll keep everyone updated after my trip to the doc. Even if I don't get back on the KTM, at least I'm still riding.

Hey Phil, good advice. It's very sobering when you see yourself slipping backwards and know that there may be nothing that can be done to help it. I'm hanging!

Mary, we are reversed. I have had OA for roughly 25 years and RA for going on 9 years now. The longer I live with it I think the quicker I can adapt now when I have to ... but I still don't like it. Thanks, I hope you can get in some good rides this summer.