Sunday, February 14, 2010

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. 

13 comments:

Cathy said...

OH my, I can't imagine someone saying that to me. That is absolutely crazy. This morning I woke up at 3:30 imagining myself out on my bicycle, something I want to do so much that I can almost feel it. I would work a million hours to know that when it warms up my joints are going to allow it. Disability is the last thing I want to imagine.

tharr said...

Hey Cathy, it sort of took me by surprise the first time a co-worker said that, but last year when a totally different person told me the same thing, I was a little better prepared and a little on the defensive. People see me at work and I limp and have problems getting down on the floor and back up. They think that's all there is to it.
I have it and I have no intention of applying for disability unless I get really bad off. I won't even get a handicap tag for parking.

Wren said...

Hi Terry ...
It's great that Orencia is helping you feel at least somewhat better, even if it can't cure your RA and allow you to enjoy the very active, athletic physical life you once had. I think this is one of the toughest things for just about anyone with RA to accept -- that our lives have changed, for goo. I'ts also great that you CAN accept it, most of the time, and get joy and laughter from other and perhaps news aspects of your life.

As someone who DID go into spontaneous remission for a number of years, I assure you that it CAN happen. But who knows why it happened, or how? I sure don't, but I'm grateful that I had those years of normalcy. It makes it a little easier to face the return of the active disease in my life now. I hope that you, too, will be blessed with a remission of RA sooner rather than later.

I can't imagine anyone "wanting" RA, and I think once those two people who spoke to you so enviously would quickly change their tune once they understood what having RA and living with the pain, disability and fatigue it brings every day means. They'd be longing for it to go away. Just as we do.

Love the photos and stories about your earlier years you shared with us. You have a really great time back then, but don't despair. You have lots of great times ahead, too. I'm looking forward to seeing more of your photos and reading more about your journey to find and photograph all those old bridges. You never know ... that might turn into a new passion that gives you almost as much joy as jumping suitcases on your bike in hotel rooms once did. ;o)

Best to you. Feel good. Keep smiling.

Laurie Grassi said...

Those people know not what they're talking about, or they wouldn't say what they did.

Wren, on the other hand, has a gift for words, and since I couldn't possibly say it better than her, I'll just add this :) and my warm wishes and leave it at that... Laurie

tharr said...

Wren and Laurie, you are right. These two people don't have any idea what they are wishing for. I think a large part of it is that people are just too lazy anymore and looking for any way out.

Wren, I'm glad you had the remission period. I would love to be able to go back and do some of the things that I used to be able to do. I have a ton of memories that I never thought much about until I couldn't do some of these activities anymore.

STRIKERS_Realm said...

Terry~

That doesn't suprise me about Mike....He was always fearless!

*Hi Mike*
gigglzzz*

Anonymous said...

I don't want it known at work that I have RA, but have had to tell my supervisor. My students don't know and I don't want them to. I am petrified of going or being put on disability. My lack of fine hand skills is probably the most depressing to me. People are like a bunch of fifth graders sometimes and say some ignorant things. When someone asks me how I deal with the pain I say, you have no choice.
I try to think about the things that I was able to do and not dwell on what I can't do now. After half a year on Orencia not much has happened to me either. You accomplish a lot more than you think you do and you are not disabled yet. Stay positive buddy. You are doing good so far and I really do get a great deal of enjoyment reading about your rides.

Living It, Loving It said...

Talk about your co-workers' ignorance. If life were only this easy. The numbness and the motions of life, somedays, I just want to hide under my covers to just be left alone to wallow in my own self-pity. It seems like all of use who live with this disease tell the same story. For me, I just want my body back, and I know it is not really mine anymore. Disability isn't a path any of us want to cross since this is the only control we have. Hang in there. There is a lot of people rooting for you.

tharr said...

Striker, Mike and I had some crazy times when we were younger. Now, we just sit around and talk about the stuff we used to do and get tired. lol

Anonymous, I didn't tell my employer or my co-workers for about a year. I work with a good crew, they can tell when I am having a rough day and will try to help me. Most days I thank them and tell them I will ask for help when I need it. I believe in pulling my own weight on the job. I won't go down without a fight on the disability issue. Thanks for stopping in, I am so ready for it to warm up so I can ride again.

Lana, I know. I was dumbstruck the first time a girl told me that but 4 years later a guy that I work with in the press room said the same thing. I was a little better prepared and told him he didn't know what he was wishing for (along with a few other choice things). He later apologized to me over it. Thanks for rooting for me, we're all in this together.

Skye said...

I think that's the most ridiculous thing, for someone to wish something like RA upon themselves. They honestly have no clue what it's like.. I hope Orencia ends up working well for you. I'm going to be starting Enbrel real soon here.

"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 really hate it too... *sigh*

tharr said...

Skye. it is a ridiculous thing to wish for or say, even if you don't mean it. Both of these individuals know nothing about RA and are basing their wish for disability on the fact that they are:

1) they are both lazy people
2) they don't see the bad side of my RA while I'm at work
3) they have no ideas about the meds and their side effects

Good luck with Enbrel, it really helped me.

BattyBeader said...

You struck a cord with me today! I had someone tell me that they "wish they did not HAVE to work". I wanted to SCREAM, "I WANT to work!"
I have never thought of RA causing a numbness...but, as I read your post, I knew what you are saying, Tharr. I WANT to run, enjoy and not be tired or in pain (or poor, LOL) I guess when we have a hard, painful, or numb day...we need to "cowboy up" or sit on the recliner.
I think about people just 10 years ago that did not even have the treatments we have now. They are crippled and disfigured. But now the "curse" is that we look fine and have to pretend.
That said, life is still good, and makes us with RA smile even bigger, through the pain.

tharr said...

Arlene, you're right about just a few short years ago RA patients didn't have the variety of meds that we have today. For that I am very thankful.
I didn't mean to whine, I really have put it out of my mind for the most, but I do miss a lot of activities I use to enjoy. Just a simple 25 minute run of a morning before going to work ... I would feel so good afterwards. Just a memory now though.