Sunday, January 21, 2018

Rheumatoid Arthritis: My Tag Along Friend

Rheumatoid arthritis (RA) and I have been in a relationship for a little over 14 years now. For years, we were in a constant battle. While I would never claim RA to be my BFF, we have somehow, someway, become better friends over the years. One of the main reasons is my RA is better controlled these days. But most importantly, after so many years together, I have finally accepted that RA will always be a part of my life and I can either hate it or find something good that comes from our experiences together. 

What RA has given me is a tag along friend who through subtle reminders throughout the day, reminds me to always treat myself with love and respect. Like a friend who might text me during the day, a sore hand or stiff knee are now reminders to stop and be present, to check in with myself on how I am managing my day. 

Here is what I hear when RA messages me: 

Are you taking care of yourself? Years ago, when I came to terms with RA being a part of my life forever, I decided to include self-care into every single day. When I feel my toes starting to ache or my shoulder stiffening up, it is often a reminder that I included too much in my day and I need to reevaluate the rest of the day.

Are you practicing gratitude throughout the day? At a time when I could barely move, I started to look for the smallest of things in my life that brought me joy. It might be the sun on my face, the sound of my wind-chimes, or the thrill of my border collie when I came home. Despite how awful my health seemed at the time, RA helped me to see that life is never as awful as it appears when I really look around and see all the beauty surrounding me.  

Are you adding quiet to your day? As an introvert often masquerading as extrovert, I absolutely need quiet in my day. It might only be 10-15 minutes, but it is a requirement for me. When there is constant noise throughout my day, my body starts shutting down.

Are you moving? With RA, exercise is a double edged sword. If we don't move, we stiffen up even more. A chiropractor used to remind me, "Use it or lose it." However, exercise with RA often causes additional pain. For me, it is in my hips. RA reminds me that I need to move because it keeps me strong and helps with my balance, something RA likes to play around with.   

You are an optimist - This is the most important message I receive from RA. During my worst RA years, I could almost always see myself well again and when I couldn't, I surrounded myself with people in my life who could take over for me. RA is my constant reminder that no matter what life throws at me, I have the ability to turn it into a positive. I really like that part of myself and I am glad RA reminds me of it often. 

Tuesday, December 19, 2017

A Letter to My Sister: Gratitude for Girl Talk with Chronic Illness

Dear Stacey (AKA My Everyday Positive),

While you and I are never shy about our feelings for each other, I want to make 100 percent sure you understand your impact on the success of my rheumatoid arthritis (RA) journey. Your daily dose of positivity brings healing to me in ways no medication can ever compete with. You are a gift like no other.

In 2004, when my RA diagnosis came, I spent a lot of time standing in the shower hyperventilating. My fears were huge. Boosting the panic was a rheumatologist who wasn’t a good match for my needs and I often fought back. I constantly read about alternative cures to heal/cure my RA and you always listened with interest. You didn’t tell me my ideas were wacky. In fact, you asked questions that made me think and dig deeper. You did some of your own research and even tried some of the ideas I shared with you. By supporting me, you gave me the time and confidence to figure out a plan that felt authentic to who I am as an individual in the world of RA.

To read the rest of my letter to Stacey, please visit here. Also, I'd be honored if you checked out my other contributions at HealthCentral

Thursday, December 14, 2017

Changing Focus for the Holidays

Growing up, my mother provided my five siblings and me with magical holiday memories that have stayed with me throughout my life. Holiday decorations, cooking big holiday meals, waking up early to see what Santa Claus had left, and spending time with family — all moments I cherish.
Those years also taught me lessons of what I didn’t want to do as a mother myself. Although our meals were elaborate and fun to make together, I often felt sad for my mom. She stayed up late into the night and was too tired to really enjoy our enthusiasm at 5 in the morning to see what Santa had brought. While we were enjoying our new gifts, she was working away in the kitchen to prepare more food than we would ever consume. It was her gift to us, but what we really wanted was her to come sit beside us and just be present.

When I became a mother, I decided right away to keep things simple. I would prepare a few favorites for the holidays and then call it quits. Plus, I would only prepare food we enjoyed. This simple decision is one of the best that I made for my family and later for my rheumatoid arthritis (RA).

To read more on how my family has learend to simplify our holidays, check out Changing Focus for the Holidays at HealthCentral

13 Self-Care Gifts to Soothe Chronic Illness

The holidays have arrived! It is time for parties, gifts, food, and more! As the fun heats up, I reflect on simple self-care practices I have learned from almost 15 years of experience with a chronic illness. These are little gifts I give myself to soothe my body and help me fully enjoy these delightful, but also stressful, times. They are completely free and entirely worthwhile. To read these tips, follow my slideshow 13 Self-Care Gifts to Soothe Chronic Illness at HealthCentral.

Tuesday, December 12, 2017

The Trouble with Mobility Aids for People with RA

By Karen McNaught

There are lots of different kinds of mobility aids out there for people who have trouble getting about. You can use a cane or a walker, a scooter or a wheelchair… It’s great, right?

Well… unfortunately, these “aids” expect that ONLY your hips/knees/ankles/feet/toes hurt. When I am in even the tiniest flare, my wrists hurt and my grip strength is non-existent. Sound familiar? How am I going to grip the handle of a walker and LEAN on it with sore hands/wrists/arms/elbows/shoulders?

Last year, I celebrated my 40th birthday in the midst of a flare, by going to Disney World in Florida. I swallowed my pride and rented a scooter. It was honestly the best decision I ever made and allowed me to enjoy my time there (and no one wants to spend that kind of money to not be able to enjoy it!). But I will say, gripping the handle to operate the scooter was hard on my thumb joints (the handle has a lever operated by squeezing with your thumb to put the scooter in forward or reverse motion). My family also went to Busch Gardens, and the handle on Scooter #2 was even harder to squeeze. Is it possible that a really good, expensive, private scooter has handles that are easier to squeeze? Possibly.

Finally, a mobility aid I can get into!

I recently saw someone with a walker and, while waiting in a long line, discovered the one RA-friendly feature – you can SIT on it while you’re waiting! It’s a portable seat! Now if only I could have a seat somehow attached to me so that I didn’t need to push it around everywhere I go…

Online suggestions for people with RA include parking closer to the store (except you still have to get out of your car, into the store, and move around the store), and getting a car with automatic transmission and power windows and locks (would be great if the car door opened and closed for you, too, right?). I have a push button ignition which is so much easier than turning a key. When my hands are very sore, I use workout gloves to help me grip the steering wheel (at least they get some use this way!). I’m also able to telework 4 days/week so I only have to force myself to drive anywhere one day/week. One source said to move to a bungalow (if only it were that easy!).

What do you use to get around?

*I want to thank my wonderful friend Karen for sharing this post and for being a great friend.  I hope we get to hear more from her. ~Cathy

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