Comments on: The Rheumatoid Arthritis Self-definition Fairy

By: Kelly Young

Kelly Young — Mon, 14 Nov 2011 18:00:42 +0000

Good points about learnng to work with it, Jennifer.
And I’d like to say that if I had even 10 seconds when my RA could be ignored, I’d be really grateful for that. I don’t think anyone around me even realizes either the constancy of the disease activity or the severity of it. The can’t see it, so they just can’t understand what you said about “constant companion.” I know some patients do have breaks between flares where it’s not as bad – that makes more sense to them – so they assume it’s like that for everyone.

By: Jennifer Wheat

Jennifer Wheat — Mon, 14 Nov 2011 13:45:39 +0000

I had this situation come up early in my prognosis. My sister, a nurse, said the same thing to me. Do not make your life all about your RA. Okay, great idea…but my RA has my life in its hands. Any thoughts on how to handle that, sister mine?

My life is about my RA as it is my constraint. It is my constant companion. I can focus on what I can do, and make that my goal, but asking me to deny my RA is like asking me to deny that I breathe.

Basically, you’re asking me to ignore my chronic illness. In a word, I can’t. But what I can do is work with my body, instead of against it, learn my new normal, and try to do the best I can to be the best me I can. And that me includes my RA. That’s just a fact.

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. :disdain:

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.