Monday, September 25, 2017

RA Blog Week: Tips and Tricks

Tips and Tricks: What are the ways you have learned to work around the physical difficulties and limitations of your autoimmune condition. #RABlog
I think it is my stubborn streak (or possibly stupidity) that prevents me from buying any gadgets that are intended to make life with RA easier. It is silly I know, but by refusing to accept them into my life, I somehow feel like I have taken a stand against RA. But, if I am honest, I have learned many tricks to work around my limitations.   
Scissors: Sometimes I feel like a scissor junkie because I keep them in my car, in every school bag, in the kitchen, on my desk...everywhere. My right hand hasn't fully functioned in years and I often can't open packages. There is nothing worse than trying to open a chocolate bar and your hands won't let you do it!  
Family: With my kids growing up and not being around the house as often, I realize they have been one of my tricks for years. More often than not they help open jars, cans, bags, etc. If my husband is about to leave before I start cooking, I tend to have him open jars before heading out. I have had more than a few panic attacks when I realized I am home alone and there is nobody to open jars for me.    
Gloves: While perimenopausal symptoms keeping my body overheated, Rayaund's makes my hands and ears susceptible to cold. Like scissors, I keep a pair of gloves everywhere. Occasionally my daughter borrows my jacket and takes out my gloves. If I discover this after I have left the house,  I am horrified that my hands might get cold because once they do, it can get bad really fast. I also have hats and headbands to protect my ears and I keep a stash of Hot Hands in the car just in case. 
Shoes: I am on my feet a lot as a teacher. I have had nights that I stood behind my desk the entire night because I couldn't wear my shoes any longer. Over the years, I have invested in shoes that work for my feet. They aren't the most attractive, but my feet are happy with me. Brands I have had the most success with are Dansko and Keen. For shorter periods, I like Vans. Also, I try to keep my feet cool. When they overheat, they swell. I wear light socks that don't snug my feet too tightly. 

I am sure there are other tips and tricks I use, but I am interested, what tips and tricks do you use?

RABlog Week: Mental Health

Mental Health: How do you manage to maintain your mental health while dealing with autoimmune disease? Discuss how dealing with RA every day makes you emotional. Do you hide your emotions? #RABlog

In my early days with RA, I stood in the shower a lot hyperventilating. My children were young and it was the one place I could escape to deal with my emotions alone. In the beginning, the "what if's" scared the heck out of me. I lacked the experience of RA to know what was in store for me and in 2004, there weren't a lot of strong RA advocates showing life is a more positive light. 

I spent a lot of years feeling good and then terrible. Good and then terrible. Good and then terrible. I felt like I was on a roller coaster, a feeling I don't particularly like. One day I was ready to fight the world and the next day I needed help out of bed. It was physically and mentally exhausting.  
However, with time, I realized a pattern. On my good days, I lived life. I enjoyed playing with my kids, working out, and performing everyday tasks. On flare days, I cried my eyes out feeling sorry for myself. Then I got mad, and finally determined. There was no way I was going to stop living my life.

Determination has looked different over the years. At times it meant fighting against RA. I always lost, but I think the game of trying to win kept me feeling like I had some control which mentally helped me a lot. I always had goals. Finally, determination became accepting that I would never win this battle against RA and instead I had to accept that it was a part of my life.

With acceptance, I became vulnerable. I was able to share my story with others without feeling judged or protective. I could open up and find others experiencing a journey similar enough to mine that I felt normal again. Acceptance allowed me to plan downtime into my day to conserve energy for the things that meant the most to me. And, while a challenge at the beginning, I finally came to the understanding that my body would require days in bed and by fighting it, I was only adding to the fire. 

I am an emotional person by nature. Hiding my emotions has never been something I have been good at. I need to cry with people and I need to be held. I know that and for the most part, have never abandoned that need. I have had difficult days, months, and even years with RA where mentally, I have struggled. But I am fortunate in that I have some mechanism within my personality that always leans towards the positive. I don't know why or how, but I ALWAYS have to find the positive in every situation I am in. I know this is a unique characteristic and that it is my saving grace in continuing on mentally.   

Friday, September 22, 2017

Six Steps to Finding Joy While Living with a Chronic Illness

Joy. A feeling that can be simple or grand, experienced in a multitude of ways, and occur when least expected.
It may be the sound of your child saying your name for the first time, getting the job you have always wanted, or the thrill of attempting a new adventure. It is a word that conjures up different visions for each of us. And sadly, it is a feeling that often gets lost in the shuffle of living with a chronic illness. Instead, the focus becomes managing pain, a new lifestyle that was never asked for, and trying to figure out the unknown. With all this happening, how can one ever get the feeling of joy back.
To read tips on finding joy, check out my latest article, Six Steps to Finding Joy While Living with a Chronic Illness, at Creaky Joints

Tuesday, September 19, 2017

What My Chronic Illness Gave My Children

“Mommy, let’s skip to the car,” my 7-year-old son says.
Grabbing his small hand on one side, and my 5-year-old daughter on the other, we make a chain as we skipped from the store doors to our car, laughing all the way. This was a regular occurrence for us. We felt free and united.
And then my body stopped working. 

Raising children while living with chronic illness

In 2004, I was diagnosed with rheumatoid arthritis (RA) right before my son turned 8 and my daughter 6. As my daughter sat on my lap and asked, “Why are your fingers so big?” I worried about what type of mother I was going to become and what type of long-term effects my disease would have on them.
Raising two children while dealing with a chronic illness has required patience, honesty, vulnerability, and the ability to honor the very people they have always been. Right from the beginning, the character of each child came out in their own unique way to support and love me.

Cathy with Children

Read the rest of the article and discover the amazing people my children are as young adults. 

Sunday, September 3, 2017

The Good News: Bernie Sanders Reminds Me of the Positive

Last Wednesday night I had a night out with my 21-year-old son. We went to a local restaurant and coffee shop before a night of listening to Bernie Sanders. We are both big supporters of him and his philosophies so it was a real treat for both of us. Plus, I really needed to hear good news. I don't know about you, but stress inflames my joints and this year there has been plenty of it.

Stepping in line for admission, spirits were high. You could feel the need to be energized and motivated - ready to make positive change in the world. Bernie did not disappoint.

As Bernie hit on various alarming topics, he always ended with "Now here is the good news." I am smiling now just visualizing him speaking those words. As I sat absorbing the positive vibes around me, it made me think of my journey with rheumatoid arthritis (RA).

The last 14 years of living with a chronic illness have been filled with lots of bad news. My personality is one that desperately needs to find the good news and let that be the focus. This is probably one of the reasons I am drawn to Bernie Sanders. He has a special way of reminding his followers that we all have a role to play in making good news a reality. Here's how I see my bad and good news with RA.

Bad news: There have been mornings that I feared I wouldn't be able to get out of bed and care for my kids.

Good news: I did get up. I wasn't always able to do the things I wanted to, but my children turned out pretty amazing, despite living with a mom who lives with a chronic illness.

Bad news: I have slightly wonky fingers and multiple nodules that often make me feel more monster than human.

Good news: The nodules in my feet, fingers, elbows, and shoulder have not prevented me from doing any of the things I have wanted to do in life.

Bad news: I have to take medications that potentially have very harsh side-effects.

Good news: So far, I have not experienced any of those side effects. In fact, despite taking an immune suppressant medication, I rarely get sick with a cold or flu. Plus, with my current medication mix, my hair has grown back in fully.

Bad news: RA often affects more than just our joints and I will always need to be aware of my lifestyle choices so that I am living as healthy as I can.

Good news: Because of my RA, I was forced to learn about better food choices, stress reduction, and living in the moment. Plus, RA has helped me focus more on my individual strengths and work on improving my weaknesses.

Bad news: When living with a chronic illness, it is easy to feel alone, as if we are the only one to experience that pain that is now a big part of our lives.

Good news: Communities of people continue to grow. Support is out there in blogs, organizations, advocacy work, and one of my favorites, HealtheVoices, which brings together people of a variety of health conditions to learn and share with one another.

Bad news: Despite my RA being in a good place, I constantly have to monitor my fatigue. One day of doing too much can wipe me out for days.

Good news: After years of struggling, the fact that my RA is in a good place is absolutely amazing.

I left Wednesday night feeling in touch with myself. I needed to hear good news - it's what keeps me going. Bernie reminded me that no matter what is happening in my life, good news is always up to me. I have the potential to change the bad to good.

*I realize that not everyone is a Bernie supporter and that's okay. My goal here is to share the effect he had on me and my desire to always find the good within the bad.

Monday, August 14, 2017

Blog Acknowledgment

I've been blogging a long time about my journey with rheumatoid arthritis. Sometimes though, it still surprises me that people read what I am writing. Thank you to all who do. You are appreciated.
Being included in the amazing group of advocates who participate in Joint Decisions has been a real thrill. Not only have the other bloggers been amazing, but the folks at Janssen have really listened to our voices and made us feel welcome.

My fourth year of being included in this list. Thanks Healthline! It is a true honor.

Wow! This is great. How did I get so lucky?
 Check out the other 40 here.

Sunday, August 13, 2017

Transitioning from Natural Remedies to Medications for RA

Trying to control my rheumatoid arthritis (RA) with diet alone taught me valuable things about RA, and about myself. While I share the diagnosis of RA with many, my journey with this disease is uniquely mine. My approach to RA may be considered by some to be irresponsible at times, but it has allowed me to follow my heart so that I could make decisions about medications and the way I live my life without regret. Join me over at HealthCentral to read the rest of this article.  

Tuesday, July 25, 2017

How to Stop Yo-Yo Exercising with RA

In October 2017, I turn 50! My sister recently asked me what I want to accomplish before turning a half century old. “I want exercise to be a part of my life again. I want to feel strong,” I said. Until six years ago, regular workouts had always been a part of my life. I wanted them back. I was tired of yo-yo exercising — starting a workout plan, stopping, and starting again.

Sharing this goal out loud somehow made all the difference in the world to me. I was ready. To succeed, I had to take some realities into consideration, such as the fact that I would be 50 soon and that I have rheumatoid arthritis (RA). I stopped working out years ago when my body started responding negatively to exercise. I had to find a plan that would work for my current body.  To read more, check out my newest post at RAHealthCentral. 

Sunday, July 23, 2017

Happy 50th Birthday to Me...Almost!

In October, I turn half a century old! Despite society frowning on aging, I am EXCITED. Why?

  • I am proud of my life and all that it includes - my family, friends, home, job...everything!
  • Without time, I would never have had the opportunity to grow my relationship with my husband of 29 years who still makes my heart patter.
  • 50 years has given me a chance to experience love as a mother and to watch my children grow into the two most amazing people ever.
  • The older I get, the more I realize we are always growing and always changing. I love that.  
  • Although I never felt I was going to die from rheumatoid arthritis, I had mornings were I wondered if I would ever be able to move again and to live in a time of fabulous medications is a good time to be alive. 
  • I have 50 YEARS of MEMORIES that make me smile. 
I am not officially 50 until October, but for this special birthday, I get to celebrate twice. Last week, my extended family traveled here to help me celebrate. We kept busy with outings but also took time to sit back, drink wine, and enjoy each other.

My sister and bestie - she made this a very special weekend.

My Chicago Scavenger Hunt team. 

The gang - two brothers and their wives, a sister and her husband, two nephews
and two nieces, my two kiddos, my husband, my border collie, and me.  

Thursday, July 20, 2017

Newly Diagnosed With RA? Common Concerns and How They May Change

A diagnosis of an autoimmune disease such as rheumatoid arthritis (RA) can set off a wide range of concerns. While you may feel completely alone as you try new medications and learn all about your condition, it may be nice to know that those who have lived with an autoimmune diagnosis for some time also experienced similar fears at first. For the most part, they now see their disease in a new light. 

To read more, check out my article Newly Diagnosed With RA? Common Concerns and How They May Change over at RAHealthCentral and find out how community members view their diagnosis today.