Friday, November 24, 2017

Marriage with Chronic Illness: An Interview with My Husband

Even in the best of relationships, a diagnosis of a chronic illness such as rheumatoid arthritis (RA) disrupts everything. Your world comes undone. All time, energy, and thoughts become devoted to your illness. But what about your partner? What thoughts and feelings have they been experiencing?
Recently, I checked in with my husband of 29 years to get his thoughts on my 14 years with RA. To read the interview, check out my latest contribution at HealthCentral 

The Seasons of Weight-Loss and Weight-Gain

"Nature does not hurry, yet everything is accomplished." ~Lao Tzu 

I teach an Adult Basic Education (ABE) class. The students who come to me plan on obtaining their high school equivalency diploma, AKA the GED. When they come to my class, their reading level is quite low and my job is to provide a foundation in reading skills. As adults, these skills don't always come easily or quickly and it can be discouraging. However, I remind them often that they are all making small but necessary steps that will eventually get them to where they want to be.They are like a rosebush. Each flower on the bush has its own unique timetable in blooming - we can't hurry it along. All we can do is nurture it and then slowly watch it unfold.   

For months now I have been working out regularly. Since the end of October, I have also been watching my food intake and eating pretty darn healthy. Guess what? I haven't lost one single pound. I feel like my students - trying..trying..trying..and not getting anywhere.

But that isn't exactly true. Like my students, I am making progress, even if it is sometimes challenging to see. I needed to start practicing what I preach and throw out the goal of a certain weight I wanted to achieve by a unrealistic date and instead focus on all the small changes my body is making that a scale will never show me.

Nature always has a way of teaching me lessons. I started thinking of my weight-loss journey as three seasons of a tree.

Spring: Just like little buds start to pop up slowly and almost unnoticed on a tree, the weight started piling on with a few pounds here and there. When I look back over the years of weight gain, several things happened: new medications, my dad died, my in-laws died, perimenopause, crazy work hours, teenagers, poor food choices, etc, etc.

Summer: The leaves on a tree are full just as my body is with the weight. In the summer, the leaves hang on tightly to the tree limbs and are difficult to shake. My weight has been the same. Despite trying different things, it seems like it is holding on for dear life.

Fall: Without even noticing it, the leaves slowly start to change color and fall off. This is where my weight is now. The scale isn't showing changes, but they are there and when I focus on these small, and at first glance almost unnoticeable changes, my goals change from a number on the scale to things that make me feel accomplished:

  • Flexibility: when I first took up working out again, my body was unstable and inflexible. That is changing day by day. 
  • Control: it feels good to go to bed feeling I had control over what I ate or didn't eat. I am less bloated, my face is less puffy. As I walk around during the day, I feel more control over my physical and emotional body.
  • Strength: early work-outs included me saying, "You can do this." Now, I say, "I am doing this." I feel my body getting stronger and even though the scale isn't budging, the amount of weight I use in my workouts is. 
  • Comfort: when I don't exercise and don't watch what I eat, I don't feel comfortable walking around, sitting, or even sleeping. That is changing - my bra is loser, my pants fit more comfortably, and I feel more secure in my own skin. 
  • Health: living with an autoimmune disease, I know that my organs are constantly under attack. It is my job to treat each and every one of them the best that I can. At the end of the day, I feel proud of myself for the care I am giving my body. 
I like thinking of my body as a beautiful tree constantly changing rather than a number on the scale. Each stage has its own uniqueness and it is my responsibility to encourage and tend to those changes in a positive loving way. Perspective is so important.

Saturday, November 18, 2017

How To Make Gluten-Free Pumpkin Roll

As I prepare for the holidays, the flavor of cream cheese starts to fill my taste buds. The holidays just aren’t the holidays without it. As far back as I can remember, my mom made either a double layer cream cheese pumpkin pie or, my very favorite, a pumpkin roll filled with yummy cream cheese. I have continued the delicious pumpkin-dessert tradition with my own family.

In 2004, when I began an integrative approach to treating my rheumatoid arthritis (RA), I chose to eliminate gluten from my diet. For 10 years I was hardcore gluten free, which meant eliminating all gluten from holiday meals. So you might imagine the happiness I felt the day my mother gave me the book The Gluten-Free Gourmet Cooks Comfort Foods by Bette Hagman, which included a gluten-free pumpkin roll recipe. It quickly became a family favorite for both Thanksgiving and Christmas and is so delicious that not once has anyone realized it is gluten free.

For the recipe, check out my post at HealthCentral.   

Monday, October 30, 2017

Reflections At 50: Finding My Beauty In Living With A Chronic Illness

And the beauty of a woman, with passing years only grows!” ― Audrey Hepburn

When I was diagnosed with rheumatoid arthritis (RA) at 36, beauty was not something I was expecting to feel as I aged. I expected wonky fingers and feet, hair falling out from medications, and the inability to button my own pants. I worried that I would never again walk without a limp. I was obsessed with the side effects of RA medications. I wondered how I could be a good mother and wife and whether I could continue working. I could only see the worst-case scenarios. So, as I turned 50, I was surprised I felt more beautiful and in control of my mind, heart, and body than ever before. To read more, click on over to HealthCentral and read my newest article, Reflections At 50: Finding My Beauty In Living With A Chronic Illness

Saturday, October 28, 2017

It's Official, I'm 50 and Have My First Tattoo!

Although I have been celebrating my 50th for almost four months, I officially became half a century old two weeks ago. And to help me celebrate, my sister/bestie visited and we both got a tattoo!!!

Neither one of us ever considered a tattoo, but we started talking about how we might if the right thing came along. And guess what, it did, in the form of a Life Is Good t-shirt.

My sister Stacey and I live over 700 miles away from each other but that doesn't stop us from sharing in each other's daily lives. Besides texting each other the ups and downs of marriage, parenting, working, illness, etc, we have a special tradition of each and every morning sharing two positives from the day before. It's a great way to remind ourselves of how fortunate our lives are and to share that joy with each other.

Once we had decided to go ahead with the tattoo, I made arrangements with an artist. Beforehand, I wasn't 100% sure how I would feel afterwards, but one thing I have learned from rheumatoid arthritis and aging is that you can never count on your body looking the way you imagine it will. With various sized nodules throughout my body, hammertoes, a few other wonky joints, and weight gain, I figured a tattoo could not add any additional harm. Plus, people always say you will regret getting a tattoo when you are old. Ha! We waited until we were old. :)

While getting the tattoo did hurt, it was honestly mild in comparison to a flare in the shoulder. (Those are the worst, right?) But the pain is not what I remember most. What has stayed in my happy place is the energy from the evening. We were joined that evening by a mother/daughter team getting breast cancer ribbon tattoos together and tattoo artists who made the entire evening feel like a party. Music was on, windows opened, and everyone kept checking in on each other to see what progress was being made and make sure the pain was okay. Best Friday the 13th ever!

Afterwards we headed home where my awesome husband had a fire going in the backyard with wine ready to pour. The remainder of the weekend it rained so we didn't get to do some of the activities we hoped to do, but it was nice just hanging out with my sister watching movies, eating, and talking. I couldn't have asked for a better birthday. Thank you Stacey. You are truly my everyday positive.

Now that I have done it, I love my tattoo more than I thought I would. Every time I look down at my bare foot, I am met with happiness.

Our dandelion tattoo represents many things to us:

  • most importantly, the positive energy we share together
  • our relationship and how we are always growing and encouraging each other to be our best
  • our positive nature that we love sharing with others
  • a reminder to always find the positive
  • a simple life can also be quite beautiful
  • life is always changing 

Friday, October 20, 2017

Ten RA Advocates You Should Follow

Could there be a better time to have RA? Well, it's never a good time to have RA, but if you have to have it, it is nice to know there are community members working towards making life better for each of us.

I have put together an amazing list of 10 RA advocates I believe everyone should be following. They are each doing unique work that benefits us all. Check it out at HealthCentral.

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.