Monday, October 2, 2017

I am in Remission. Do I Still Belong in the RA Community?

In my HealthCentral post, I am in Remission, Do I Still Belong in the RA Community? I share some of the questions I have struggled with as my RA has gotten better.

  • Do I still belong?
  • Is it unkind to share my good days?
  • Where's the support when you improve?
  • Can I be an advocate when I am not in pain?
  • If my meds stop working, will I still have support? 

Friday, September 29, 2017

RA Blog Week - High Fives

Great Blogs I have read this week – RABlog week is, at its heart, a way for bloggers to connect. Tell others about the great blogs you have read over the week. Perhaps you have found a gem from a blogger you did not know before or maybe one of your friends shared special insight. Give the high five in print to another blogger or two who participated in 2017 RABlog week.

It has been another amazing week of learning and growing with the RA community. Thank you so much Rick for organizing and promoting this amazing community event and for everyone who shared their stories. It's been a busy week for me, but I enjoyed sitting down and reading through several different blog posts. I didn't get to as many as I would have liked, but there is still time! Here are a few special gems from each day. 

Day 1: Mental Health
The Unexpected Advocate does a beautiful job of sharing her journey in the post Emotional Stability & Me. She admits she doesn't have the answers, but shares how she is managing - help from friends, listening to her body, and asking for help. Love!

My good friend Lene from The Seated View shares Five Tips for Better Mental Health with Rheumatoid Arthritis. Each tip is magnificent but I especially love #4 - Choose Joy. 

Day 2: Tips and Tricks
A Rheumful of Tips never disappoints at breaking down life into simple tasks. Check out her Day 2 post plus all the other wonderful tips she has to share on her blog.  
The Old Lady in My Bones provides us with items she includes in her emergency kit in her post Days Like This. She has some great things.

Day 3: Partners 
In A Panegyric to My Partner, Pollyanna Penguin discovers one of the best lessons to a good relationship - taking a step outside of our own pain and viewing it from our partner's perspective. 

If you ever need a dose of love, talk to Rick from RADiabetes. There is never a drop of doubt that Rick is in-love with his wife. In his post Valentine Day Love Letter, Rick shares his story of love and the woman who stands by his side. 

Day 4: Hobbies
Cathy at Arthritis Wisdom wrote an elegant post titled 3 Gardening Tips RA Style. When I clicked on her blog I was instantly drawn to her welcoming smile. And, since I have started enjoying a little gardening myself over the years, I wanted to learn tips on her success. I'll definitely be back to read more of her posts.

Karen at The Dog and Duck wrote several great pieces this week but I couldn't figure out how to leave comments. (Karen I hope you are reading this! I enjoyed your posts this week.) In the post on hobbies, Karen shared several activities that I enjoy myself - drinking with my husband, camping, and my kids. I think we are both at a phase in our lives where we are slowing things downs a bit and enjoying the time with our husbands.     
When I first started blogging in 2008, I would sit at my computer reading blogs each morning. Reading about how others were managing their RA gave me such hope. As my symptoms have improved, I have not spent as much time doing this. This week was good. I felt like we were a community sharing and helping each other. Plus, knowing there are still many posts to read through makes me happy.   

Thursday, September 28, 2017

RA Blog Week: Hobbies

Hobbies: Hobbies are healthy or maybe they are not? What is your hobby and how does it help you with your autoimmune conditions? If you do not have a hobby imagine a great hobby for a person dealing with RA. #RABlog

My hobbies have not really changed with rheumatoid arthritis (RA). My personality has always been one that has enjoyed quiet and downtime. I guess I was a natural for RA. :) 

Walks with my border collie: A day doesn't seem complete without a morning walk with my border collie. During flare days, I latch her leash around my waist and ask her to please walk slowly - she  rarely obeys. But, she seems happier going at a slower pace than not walking with me at all. She seems to need that time with me in the morning too. It is a time to reflect on the day before, smile at neighbors, and enjoy the beauty that mornings bring. Plus, while my joints need to rest, they also need to keep moving. Walking is a gentle exercise that is available to me in various forms depending on where my RA is.     

Bike rides: My husband and I rode bikes together long before kids and then added them to the fun. When a time came that biking wasn't going to work for me, my son took over as my husband's partner and while I felt a little left out, I couldn't have asked for a better person to fill in for me. Today, with my RA under control, bike riding is once again a hobby we can enjoy together. It is a time to forget about the rest of life and just enjoy being together in nature. Generally, even when flaring, I can bike ride. It may add to the pain later, but while I am riding, I feel good.   

Reading: To be honest, since Netflix and Hulu entered my life, reading has slid down my list of hobbies but I am going to keep it above TV since it brings greater satisfaction. When life brings stress (and therefore sore joints), I head outside to our backyard where I can hear my windchimes blow and sit in my swing to read. Reading brings knowledge and a peace of mind that nothing else can do for me.

Podcasts: Because I have various teaching jobs and different locations, I am in the car a lot. My joints do not like this at all. To keep my mind focused, I listen to podcasts. I learn so much while driving! Plus, podcasts provide amazing information and conversations to share with my son!
TV: When my body is sore or needs to rest, I love finding a comfy spot on my bed and vegging out for hours on a TV series. Plus, when I am flaring, TV is a great escape as I often don't have the energy to discuss what is going on immediately.   

Writing: This is a time for me to organize my thoughts and feelings. As an introvert, there are oten multiple conversations going on at once in my head and writing gives me a chance to organize all that I learned from those conversations. 

Wednesday, September 27, 2017

RA Blog Week: Partners

Partners: Where would we be without our partners? They are often not just partners but caregivers. Tell your partners story. And if you do not have a partner what will your ideal partner be like, or do you even want one? #RABlog

My husband and I have been married for 29 years. We have literally spent our entire adult years together. For the most part, being married to him has been easy because we have continually grown and changed together. 

RA has not been any different - it has required that we learn new things about ourselves and that we communicate these changes so the other one can be included. 

There have of course been times that we have both felt lonely due to my health condition. RA creates lots of fears in the "what if's" and I have often needed time alone over the years to understand and accept what is happening to my body. It took me several years to finally realize that while I am going through a lot myself, my husband also experienced the "what if" fears. Plus, it isn't easy to watch the person you love live with pain and not know how to stop it. 

Overall, my husband has given me a special gift. Unless I tell him otherwise, he goes on with life as if I don't have RA. It is a gift because he has never stopped loving me as a complete person. While I sometimes see myself as an RA patient, he doesn't. He sees so much more in me. He continues to ask me to experience life with him, something I love to do! 

RA has been a growing process. It has challenged both of us to communicate better and not expect the other to read minds, which is good for any relationship. We are in this together and when I ask him to slow down life, he does. Otherwise, we just continue living the best life we can together - growing as individuals and making memories. 

Important add on: After posting this, I realized that sometimes I focus only on how amazing I feel when I am with my husband but that I often forget to share another role he plays in my life. My husband works a job that doesn't feed his soul but provides for us. Each time he is offered a new job, he has to ask a million questions about health insurance before accepting so that I have the medical care I need. What his job also does is allows me to work part-time. Even though my RA is in a good place right now, the fatigue is still huge and little things can set me in a minor flare. Working part-time helps me to take care of myself. Most importantly to me, his income has allowed me to homeschool my kids and make a million memories with them and to work a job I absolutely love. All of these things play into my overall health. 

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.