Comments on: The Rheumatoid Arthritis Self-definition Fairy

By: BattyBeader

BattyBeader — Mon, 12 Apr 2010 14:56:45 +0000

Kelly, what a great read! RA and Fibro tapped me on the back almost 3 years ago. I was newly married and my only child had died 2 years prior. It threw me over the edge as far as my “life plans”, and where I thought my 44 year old life was heading.
My ex could not handle a “sick woman” and left. I fell into a huge depression and wallered in self pity and questions of what did “I do so terrible in life to deserve so much.” And now, a stupid disease!

My biggest “fear” now is to commit to plans. As, I do not know what I will feel like on a day to day basis.

But, that being said…I have learned to like me, even on days when I can’t do a darn thing. I have enjoyed the solitude to reflect and write. I have enjoyed a recent move to my own apartment. I enjoy petting my pup. I have accepted that I can say “no”, not because I don’t want to, but because I just can’t…be it energy or pain.

The absolute MOST important thing that the RA Self-Defination Fairy has taught me is that I can release guilt and shame from my new lifestyle. And it is ok.
Some friends have left, but were they really friends then?

By: Kelly Young

Kelly Young — Tue, 09 Mar 2010 17:09:20 +0000

Deb, What a great attitude.
Sheila, Familiar themes there – I miss a lot of the social things, too. Hold on. Hopefully, ssdi will come through soon.

By: Kelly Young

Kelly Young — Tue, 09 Mar 2010 17:07:21 +0000

Hard to fight something that comes along in the middle of the night like a thief isn’t it?

I guess what matters is how we look at it – you are so right – even if RA draws the lines around us for us to draw in, we can decide what color we will make it inside those lines. I still love life, too.

By: Deb

Deb — Mon, 08 Mar 2010 03:58:40 +0000

Wow, your situation sounds almost identical to mine. I was 56 when I was formally diagnosed. Looking back over the years, there were clearly signs of starting with RA. The aches and pains were minimal; nothing debilitating until two years ago. We were also empty nesters and looking forward to retirement. My husband lost his job, due to the economy, about the time I was needing numerous meds to keep moving. I was also dealing with a mother with dementia that demanded a lot of my time. My stress level was through the roof. I figured the stress wasn’t helping the RA, so I requested my Dr. put me on an anti-anxiety med. Can’t tell you how much better I feel, mentally. I don’t lie awake at night stewing about all my problems or cry at-the-drop-of-a-hat. My mind-set has improved tremendously. I have my deformities, too, in my hands and wrists. Some things are difficult to do. My right shoulder keeps me from reaching over my head. Before Humira, my knees were unpredictable; now I can walk without struggling too much. I thank God every day that He gave me RA and not cancer to deal with. My daily challenges are to not feel sorry for myself; not to complain to other people about my physical challenges; and to live every day with a sense of humor. Life can ALWAYS be so much worse.

By: jennifer

jennifer — Sun, 07 Mar 2010 21:20:34 +0000

As much as I fought the battle to NOT let RA define me I lost. When I was in my early RA years with small children, I was determined that no matter what, I would do everything my friends did plus a little more. I kept telling myself that I would not be limited by this disease. Needless to say I did keep up with my friends (most of the time) but paid a high price for it. Instead of joining in once or twice a week and enjoying it, I wouldn’t miss anything and I would suffer in silence as I dragged myself shopping or playdates then come home, collapse and feel sorry for myself. I did this to convince myself (and others) that I was living a NORMAL life. Quite delusional isn’t it??? As the children grew so did I. I finally cut myself some slack and didn’t feel that my life would suffer if I missed a shoe sale or some other silly outing.
RA still defines me in the traditional sense of aches and pains but I have accepted this as MY LIFE and have learned to love my RA self.
Would I have chosen to have this disease in my life? Of course not. But it does define everything I do in my life and the way I do it. Even with RA, I think I have a pretty good life and wonderful friends who accept me AS IS!!!

By: Sheila

Sheila — Sun, 07 Mar 2010 16:24:23 +0000

I have to say RA has changed me as a person. I am not the same person I was before RA. To me this was suppose to be the time in my life where my husband and traveled and took vacations and basically enjoyed life. Our kids are grown. Then little by little it was like pieces of me were changing, I was becoming a different person. I wasn’t the fun, energentic person I use to be. We would host dinner parties, visit friends, meet for drinks at different places and shoot pool. To me RA has changed me dramatically. I can no longer work, I take medications throughout the day. I can’t plan anything, due to the fact that I have no idea how I will feel that particular day. I have become depressed, I have anxiety due to wondering how I am going to be years from now.
Been waiting over 2 years now for SSDI. Been denied then appeal denied now awaiting for a hearing date. Our retirement money is deplinished. We are barely making it money wise. Medications are expensive, my husband’s health insurance wasn’t any good for me. So we have to take out private insurance. Needless to say this is not how I planned on my early 50s!! Basically broke, hurting, fatigued, stiff, showing signs of deformity in hands and wrists……….

By: Kelly Young

Kelly Young — Thu, 07 Jan 2010 19:02:44 +0000

Well put, Carol. And, even when we run out of options physically, we can choose how to respond emotionally. It can get hard when you are physically more limited than you’d like to be, but the perspective you describe is more “empowering,” as they say. Less desparate.

By: Carol

Carol — Thu, 07 Jan 2010 18:36:49 +0000

A friend has been yelling that he “just can’t handle this anymore” regarding a whole lot of difficult things happening in his life recently.

I found myself thinking we ALWAYS handle those things and not handling them is just not an option. Sometimes we handle them in a way that is positive or at least useful, sometimes we handle them poorly or handle them by running away from them.

But we always handle them, and in that way we have some choices available of how we choose to handle them.

By: Ricky

Ricky — Thu, 23 Jul 2009 14:11:42 +0000

First I should say that I don't have RA, but I have ME/CFS and EDS and a laundry list of other acronyms which disable me so I think the effect in terms of self-definition is very similar, if not identical.

I first got sick when I was 19, in the middle of University. I had dreams of finishing my undergrad studies here in Australia and doing postgrad work in the USA in the field of cognitive science/artificial intelligence. I was really good at it! I'd finished almost 3 years worth of Uni work in 2 years and I was loving the challenge.

Then I got sick and never got well enough to go back to Uni. Managed after 4 years or so to finish my degree via correspondence but it was a huge struggle. I've never been able to work or support myself. Feel in some ways that the disease has never allowed me to be an adult - never supported myself or had a carreer, never bought a house, never married, had kids, etc. I know lots of 34 year olds haven't done many of these things yet, but I probably never will.

In other ways I feel I'm much older than 34 - stuff I've been through means I can be pretty damm wise about some things. Nothing specific to me - it's a going-through-tough-stuff attribute I think. And of course physically I feel decrepit and useless. Realising my 89 year old grandmother is more able than me is challenging!

I used to think a lot about the Ricky-who-never-was who didn't get sick. Wonder where she/I would be and such. I don't do that now, at least not much. I just be me.

r

By: MissDazey

MissDazey — Wed, 22 Jul 2009 00:04:00 +0000

I was recently having a major melt down, both physically and mentally. I thought I just couldn’t handle this anymore. Then unexpectedly a memory of another bad time flickered across my mind. I mean BAD TIME. That was also circumstances beyond my control and changed my whole life. I started writing down how many of these things I’ve lived through and survived. Gee, I am stronger than I thought.

Kelly you are so right that, the RA Fairy does give us a short cut to our true inner person.