Musings on Disability and Life

I was diagnosed with RA over 50 years ago…..I have been sick a big part of my life…..never had the stamina others had, but refused to give in to it…..I’ve worked very hard all my life.
I live with RA but its not my life……I applied for disability and was awarded…. eventually I decided to start my own business…..one that would supplement the disability and allow me to work at my own pace…..it’s not about the money because I do not make a lot, but I can be productive….I can be creative, and that gives me an outlet….on the days I feel good enough….from my home….I do not have to work…its perfect for my RA….I still set goals for myself….solid goals I can work towards. This life is fragile….unexpected things can, and do, happen to us….But I have a God who is a great cheerleader…..that continues to push me in the right direction!!! 
It helps when we stay positive.  It does take time for us to re-invent our lives – to salvage and modify what we used to do that has brought us joy all our lives. These are the gifts that make us special, that I believe God has created us for. Our lives are not wasted because we have a chronic illness. We have a lot to offer with our gifts AND we have a lot to offer just because of who we are – nevermind what we do.
We are as limited as we let our selves be limited  our mental outlook is a huge part of our overall happiness and it’s extremely hard to focus on that with pain encompassing every minute of every day.

Getting Over Fatigue and Being Productive Again

 

The last couple of weeks have been a struggle for me. I’ve experienced fatigue every afternoon. I noticed that by one or two o’clock my body had begun to feel limp and my eyes refused to stay open. I know that this is normal for people with rheumatoid arthritis. We are told to ‟rest frequently” and not ‟over do it.” However, this is not normal for me.

Unless I’m sick, I don’t take naps. I am active throughout the day, writing, watching television, or playing on my computer. Having the urge–no, the need—to lie on the sofa and rest is rather disconcerting.

Why am I so tired? Being a logical person, I had to analyze the situation. After some thought, I’ve come up with two possible reasons.

  1. I was taking prednisone for ear problems and when I finished the prescription, my body was in withdrawal. One of the side effects of prednisone is feeling antsy and nervous.
  2. I’ve been off my Enbrel since April 13. It is possible my RA is causing the fatigue. Not taking anything except ibuprofen for pain may have created more activity.

I’m happy to report that I am feeling more energetic this week. Enough so, that I was able to work on my book and sent files to my editor. Looking at my list, I see that there are only four chapters left to rewrite. Yay!

How has you week been? I’d love to read your comments.

 

A New Life

open book diagnosed at 17 excerpt The following is an excerpt from my upcoming book. I hope you enjoy reading it. If you want more, sign up to my mailing list. Not only will you get emails alerting you to new content on the site, you’ll also receive a copy of my ebook Rheumatoid Arthritis: A Life-Changing Disease. This ebook is the ‟appetizer” before the meal. It describes some of my experiences coping with RA.
Continue reading

Enbrel Stopped working?

syringe
RA is a despicable disease! One day you’re feeling okay, the next it knocks you on your butt. I went to my rheumatologist today for my regular check-up. Felt crappy and told her so.. After checking me out and discussing my problem, we decided that perhaps my Enbrel isn’t working anymore.
Continue reading

Don’t lose heart

I wanted to write an upbeat, cheerful post this week. I hoped to bring you a positive story about how my life was easy and free flowing last week. However, I’d be lying. Over the last seven to ten days my body has been screaming for attention—not that it doesn’t get enough attention already; but it wants to be front and center. That is the nature of any chronic illness, and certainly rheumatoid arthritis. So, settle in and let me tell you about my week.

Continue reading

Metal and Plastic

picture of me

“I am the real bionic woman.” At least that’s what my family calls me. As a result of my rheumatoid arthritis, every major joint in my body, and a couple not so major, is now made up of metal and plastic. In fact, in 1982 four of them were replaced. The first two, my knees were done in January, 7 days apart. I tell everyone my many surgeries paid a large portion of the cost to build the hospital’s parking garage. And, as the years pass, I continue to pay for the maintenance costs.
Continue reading

My new toy to make life with RA easier

counter top  oven

I love to cook and bake. However, I can’t, unless there is someone around to chop the ingredients, lift heavy pans, and open jars–basically be my “sous chef.” Most of the time, that person is Greg. He doesn’t like cooking, and really dislikes cleaning up the mess, but he is willing to do it for me.

It is impossible for me to use a regular oven, so last Christmas he bought me a counter top oven. I had one for years, but, before I moved in here, it quit working. I asked for a new one every time I wanted to cook something. I guess I finally wore him down. Now, although Greg still helps with the preparation of the meal, I am able to do more. This is a big boast to my sense of independence.

Even if you don’t have a condition that restricts your ability to do something, there are many aids on the market that help make life easier. Do you have a favorite appliance or tool that you can’t live without? Leave a comment below and share it with us.

I have RA, but…

I have RA, but it does not have me. It is not my life. Yes, sometimes I grieve for the old life–the life before RA—but, I know I can’t change what life has thrown at me. I can however, learn to cope and focus on what I can do each day. Although, I have had to change the direction of my dreams and have to do some things differently, I keep on dreaming.
Continue reading

“Disabled” or Not

How do feel about the word “disability?”

Someone asks me that question every so often. Recently it came in an e-mail from my editor. She was talking to a woman who is blind with an aromatherapy and massage business when she asked the woman if it was difficult to run her business with her ” disability.” My editor said that the woman “seemed very troubled by the use of the word.” This business owner said she focuses on what she can do and thinks of her business as an “ability.” After talking about it, they decided that the word didn’t seem like a nice word — “more like a misleading, judgmental label.”

I told her I agree; I don’t like its use either. I prefer to say I have “limited abilities” or some “physical challenges.” The words “disabled person” sounds like the person can’t do anything for themselves. And that is the sad part, so many people see what we CAN’T DO instead of what we CAN DO.
Continue reading

Are you confused yet?☺

A couple of posts ago I told you my book was finished and I wanted readers to preview it. Well, guess what; I’m not done writing!

I hired an editor who looked at it and suggested I expand on a few places. Yes, I know that’s what another editor said and I rejected her suggestion. However, this lady actually gave clear, sensible ideas and even pointed out where, and possibly what, to add.

Therefore…my book is still in the writing process. I promise next time to not “jump the gun” and tell you I’m finished before I’m actually done and ready to publish.

So, onward and upward. Keep reading and leaving comments. Your feedback keeps me encouraged.