Tuesday, July 7, 2009

The Me Before Rheumatoid Arthritis

The old me is still in the scrapbook.

Let me introduce you to the me you can never meet: The Me Before Rheumatoid Arthritis

If you have RA, you spend lots of time adjusting to change. For me, the biggest adjustment has been to the disability. First, there is frustration that I cannot do what I still want to do.

But the “old me” is still around – she lives on in my mind. However, she no longer matches the “physical me”. The second frustration is that no one else can know the mental me because the physical me cannot perform the actions which the mental me still wants to do.

A great deal of effort has been spent grieving what I can no longer do, accepting a new norm, and finding new ways to express that old me who did not die. When I meet someone new or fill out a bio, I hate to be asked what I like to do. I CAN’T do what I like to do anymore! So, I act like a grown-up and focus on things more important than whether I can quilt or play tennis.

For this reason, I have been consciously learning more mature ways to define myself. While the Rheumatoid Arthritis will not allow me to express it in the same ways that I once did, I am still… creative, ambitious, independent, generous, and strong. I am still the kind of person who wants to get big things done!

It has only been three and a half years since my Rheumatoid Arthritis became what I always call "full blown,” so I know I am still adjusting. Perhaps that is why I still get ticked off when people see me as lazy or wimpy. I wish I could show them that, before all this happened to me, I could have done what they are doing, too – at least as good as they do it. That is ironic since I spent so much effort moving forward.

If it’s okay, I would like to look back over my shoulder one more time. Just long enough to let me introduce you to the me you cannot see:

The Me in the Scrapbook
Nothing is too hard. If I can’t buy it, I will make it. I sew my own
curtains, slipcovers, and clothes for my little ones. I have refinished dozens
of pieces of furniture. I make Christmas presents. I am fit. I love to run and
swim for hours. I do not ask for help. My dad was a United States Marine;
sit-ups and push ups are recreation!

Once, I bought a home with a 2 foot ditch dug out all the way around
it. I convinced nearby road workers to dump a whole front loader of dirt in my
front yard. I spent weeks with a wheel barrow and a rake grading the entire
property. Then, I landscaped it properly so that it was the envy of the
neighbors. I used to trim my trees, clean my gutters, and plant my vegetables. I
kept my front entrance like a House Beautiful magazine cover.

I bought 22 fifty pound bags of concrete, mixed them with water in my
wheel barrow and put two coats of stucco on the outside of that house, too. Of
course, I painted the whole thing inside and out. I even painted the playhouse
to match. Inside the playhouse, I created sky on the ceiling, and flowery dunes
on the walls.

I make my soup from scratch. I bring meals to the sick. I have hosted
many dinner parties and receptions in my home and in large church halls. I used
to make all of the food and decorations myself. I am tough. I survived
encephalitis without medicine. I can take pain. I had five babies at home with
no medication. I have homeschooled them all. Two of them have a physical
disability. Really, this is the tip of the proverbial iceberg.

Whew! That was a whirlwind tour down memory lane. I hope that did not exhaust you, too.

I have had to say good bye to the old me. As if that were not hard enough, someone told me last week that I just need to be willing to put forth some effort. People only say that because they are judging me by what they see on the outside. They don’t know the other me, the one who still lives on in my mind. I guess I could show them my scrapbook. (NOTE: I will post the photos on the Facebook page, so you can see them enlarged, with notes.)


Tiffany said...

I went to an arthritis support meeting (mostly RA) last week and we discussed this issue a lot! The "old me" syndrome. Becoming disabled GRADUALLY really makes it more difficult I think, then top it off with seeing "the same physical person in the mirror", it's a mental screw! lol I used to LOVE kickboxing and I don't want to give it up...so on the not-so-bad days I still go, never put on the boxing gloves, never actually punch or kick the bag, and my friend goes with me...when we partner up she even "holds the bag for me" even though I'm not touching it :) . I guess I just refuse to give up things I love and lose the "old me" entirely!

Kelly said...

That is awesome. Hold on to everything you can!My kids help me "fake it" like your friend does. Awesome.

I just spent so much effort "accepting" the new reality that I am aggravated at people who judge me as a slacker.

Ching Ya said...

Feels like I get to know a big part of you from this post. The strong willed and energetic lady who's determined to handle anything that comes in her way. For that I really admire your strength. Most of us wouldn't understand the struggles you've been through, and we easily take things for granted. Thanks so much for sharing your story, and as a token of appreciation, will support your FB fan page.

You've done fantastically with your blog with informative, inspirational content. Keep it up. A person who's mentally and spiritually fit is what make things happen eventually.

Social/Blogging Tracker

Kelly said...

Thank you Ching Ya!

bkenney1 said...


I think the sentiments reflected in your post are very consistent with what I have learned in speaking with people living with RA over the years.

Thank you for your openness and for your efforts with your blog. I believe it goes a long way in raising awareness about rheumatoid arthritis.

Keep up the good workd and look forward to reading your future posts and perspectives.



Brian Kenney
Centocor Ortho Biotech Inc.
Corporate Communications

libby said...

Wow, what a post, you have just summed up what I have struggled to articulate for 22 years and it's brought a tear to my eye! People that so 'helpfully' suggest that 'pain is all the mind' (someone actually said that to me!!!) and 'you just need to stay active' really don't know how frustrating it is to hear. I too mourn the old me although having RA since the age of 19 I've had a long time to get used to not being able to do what I want to do. I've had a hip and shoulder resurfacing (much better than total replacement) and I am still as strong and stubborn as ever, I still try to do everything myself and only ask for help as a last resort. I really believe that this helps keep the disease at bay for longer, when you give up trying to do things for yourself things really get a hold, so stay strong and stubborn....it can only be a good thing. x

Kelly said...

Thank you, Libby.

Wow! 22 years; You are quite a veteran RA fighter. Love your spirit.

Mirah said...

Funny...I've never looked at it that way. Maybe for me it's been a slower progression and seems to just make me age quicker than most. One of the most difficult days I had was seeing a woman of 90+ getting around far better than I...but then I always try to find solace in the old "I cried cause I had no shoes. Then I saw a man with no feet" mentality, and there are so many people worse off and so many far worse diseases to have. I have a friends with ALS as a constant reminder of that!

The list that helps me the most is the one of things I'm grateful more:

- I'm grateful I never learned to play the guitar (though i tried many times). Glad now that i didn't succeed cause I'd be very frustrated at not being able to play.

- Grateful I CAN still type (with LOTS of typos!) and even KNIT!

- Glad I'm not a "trekke" cause I can't make the hand sign.

- Glad no one in my family is deaf requiring me to sign!:))

- Very grateful for my health insurance and every new med that helps me stay pain free and active at 64 with 30+ years of RA and lost of permanent deformity!

- Glad to have a sense of humor and glad that I was never very vain.

- Grateful I was never a shoe-aholic cause all I can wear these days are mens extrawide sneaks that accommodate my AFO ankle braces.

But I have no sense of who I would be without RA, and no sense of loss of that 'other' me. Maybe its because it is who I have been for most of my adult life...

Kelly said...

Glad to see you here Mirah!
What a nice list! Great viewpoint from one who knows! Thank you.