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How to Change Your Diet With Rheumatoid Arthritis

Looking to change your diet to help reduce the inflammation in your body? Diet changes has been a huge part of my RA journey. I have tips to share here. 

Caring for a Newborn When You Have RA

Thank you to all the mamas at Mamas Facing Forward for sharing their struggles and tips as a mama with a newborn. I am in awe of you. See the entire slideshow here and if you like it, please share so that other mamas can learn from these amazing people. Happy Mother's Day. You are doing great!

Raising Arthritis Awareness Within the RA Community

1st year with RA

Since early 2004, I have worn many RA hats. When I was first diagnosed, I was quite active. With two young children, I had to be. But besides running after kids, I worked out regularly. Then things took a nosedive and I was embarrassed for my family to see me walk down the five stairs to the main level of our house. Then I improved. Then I got worse than ever. For several years I struggled to lift my bed sheet over my chest. Today, I am in a good place again. FYI, a good place to me means I can do just about anything I put my mind to but I fight fatigue on a daily basis, have occasionally knee flares, and humidity makes my fingers swell to a point they won't move.

All I see in this photo is the pain I
was in and the prednisone I was on.

My journey with RA has taught me a valuable lesson that I want our community to understand and then liberally share with the world. There is not a one size fits all when you are diagnosed with RA. Sometimes I feel like our own community doesn't understand this fact. It breaks my heart when friends who have struggled with pain finally get to a place they can share a photo of themselves doing yoga or running a 5K and are instantly accused of "not really having RA." That's not okay.    

Modern medications are making it possible for many of us to move outside of the lines that have been drawn for us by research, doctors, and even our community. When I was at my worst, I wanted nothing more to read about someone taking up weight training, starting a new job, or adding on to their family. These are the people that gave me hope that my life with RA could and would change. Let's learn from each other. Let's support each other at where we are right now. Let's let go of the competition that is often found in our community to prove we are sicker than anyone else. 

Living life!

When we tear each other down because of lack of information about the full spectrum on RA or out of disappointment about our own RA journey, we hurt each other. Attacking someone in the community scares them away and all we are left with are the worst case scenarios. While these stories are also needed, they don't show the full picture of what our community is doing. I believe we are diverse and full of numerous stories to be told, we just have to be ready to listen!

Rheumatoid Arthritis Win with DIY Project

My sweet Izzy took nap time
 downstairs to be close to me. 

In our current house, I've painted three bedrooms, two of them multiple times now and the kitchen. So, when I decided to paint our small downstairs bathroom, I thought it would be a breeze. Nope. The bright yellow walls we painted almost 16 years ago were stubborn about leaving. Then, the paint color I had so carefully considered looked awful on the walls and I had to prime again. Finally, we found a color everyone is happy with and the bathroom is complete.

From bright yellow to
rose
marquee.

Do-it-yourself projects tend to make me feel rather proud. Partly, I feel a sense of accomplishment that I was able to complete the project by myself but more than that, I feel a certain satisfaction in knowing that rheumatoid arthritis doesn't currently have control over my life. Sure, I know beforehand I will wake up with sore wrists and I did. My fingers were swollen throughout the process, but not unbearable. It was tough to squat down and paint behind the toilet, but I managed. Rheumatoid arthritis has a way of taking me down at times but when I accomplish something big like a DIY project, it is the best. Somehow, a win against RA even makes the room more beautiful. 

Feeling Sexy When You're Hurting: Body Image and Chronic Illness

Let’s be honest, feeling sexy in the traditional sense of done-up hair, makeup, and sexy lingerie is most likely a low priority when your body is in pain. If you are anything like me, a shower and shaved legs might be as seductive you get. Is it even possible to feel sexy when you can barely walk, moan in pain, and feel you’ve aged a hundred years? Absolutely. However, it takes some work and reassessing what “sexy” means with a chronic illness. 

To read my very candid thoughts on how to bring your sexy back, check out this article and other work of mine at HealthCentral.

Vulnerability: It Makes Us Human

As an adult education instructor, I have the unique opportunity of learning the magic of vulnerability from the students I teach. With each and every class, the folks I meet begin expressing their fears on day one when we discuss our educational goals for the semester and beyond. In the 16 years I have been teaching adults, there has never been a class where a student hasn't apologized for their reading and writing skills. It is humbling to have these words shared with me when I am still a stranger to them. My heart aches for them but also grows with admiration as they open up a world to me that they have be trying to hide for so many years.

This semester, I have a woman in one of my classes who, in my opinion, seemed to have something to prove to the world. She tried finishing my lectures and jumped on answering questions before I had finished asking them. I felt angry that she was trying to high-jack my class. But then, she amazed me with her strength as a person. She stayed after class to talk. She shared that in her native country she had learned English and felt very confident coming to the US knowing all aspects of the English language. Then she arrived and realized she doesn't understand anyone speaking English except those who have the same accent as she does. She shared how frustrated she was with herself and asked for help. In that moment, she opened herself up to me as an entirely different person. By sharing her vulnerable side, I felt the tension I had towards her leave my body and all I wanted to do was help her.

When living with a chronic illness such as rheumatoid arthritis (RA), vulnerability is tough. By admitting to others that we are in physical/emotional pain or that we can no longer perform activities we once did with ease, we feel defeated. And, with time, we often let these insecurities build up until it is almost impossible to let our guard down. Many times we are even afraid to be vulnerable with ourselves, to let ourselves cry and experience the pain we feel inside. Admitting our true feelings, even to ourselves, can sometimes be too painful. But please know that by sharing fears, frustrations, and insecurities with others is the core of who we are as humans. It is how we grow and how we learn about ourselves and others. RA has been a good vulnerability teacher for me. Sometimes I am a good student but other times I resist. However, when I do finally let my guard down and share with others, I feel liberated. By acknowledging my vulnerable side, I am able to move on. 

Brene Brown says, "What makes you vulnerable makes you beautiful." I believe this. Each time a student or fellow RA community member shares their story, I feel energized that I am not on this journey of life alone. I feel a stronger bond with those who allow me to see what is inside them, to really know them, and I hope others feel the same way about me.

Rheumatoid Arthritis: Why Don't They Understand What I Am Going Through?

Learning to live with rheumatoid arthritis (RA) is no easy feat. It takes time and patience to comprehend what RA has in store for our bodies and how we will personally deal with it. To make matters worse as we grapple with this life changing event, we must educate our family, friends, and even our coworkers about RA when we have little energy to spare. We may come to realize that the people in our life don’t respond the way we had expected, leaving us to wonder: “Why don’t they understand what I am going through?”

To read my take on why others might not understand what you are going through, visit me at HealthCentral.

My Maturing Relationship With RA

Have you ever been in a relationship you didn’t ask for and couldn’t get out of? That’s how I felt when I met rheumatoid arthritis (RA) in January of 2004. Our introduction was painful and those first years of getting to know each other were less than ideal. There was a lot of crying, yelling, and many misunderstandings on my part. Looking back, I was immature in what it meant to be connected to an autoimmune disease such as this and wasn’t ready for the demands it put on me. RA brought out a side of me that wasn’t pretty — lots of hyperventilating, tears, panic, and doubt in my future.

To read about how my relationship has matured, visit me at HealthCentral.  

Sex and RA: How to Talk to Your Spouse

It’s the end of the night. I crawl into bed, get in as comfortable a position as I know I will find, and then feel my husband’s hand on me. “No!” I know that touch and what comes with it. What do I do?

Talking to a spouse about sexual needs and wants is not the easiest of conversations, even without a chronic illness like rheumatoid arthritis (RA). However, sex continues to be a major part of many relationships with RA and to keep it alive, we must be open to uncomfortable conversations.

To read my tips on talking to your spouse, visit me at here at HealthCentral.  

Supporting Baby Steps: Being Gentle with RA Newbies

My right hand no longer makes a fist. Despite physical therapy and regular use of rheumatoid arthritis (RA) medications for seven years now, my fingers lost full ability during my years without conventional treatment. Now that medications have controlled my RA, I’m often asked if I regret the two-year drug gap I took. My answer is always: “No!” It was a process I personally needed to go through before I could comfortably accept medications into my life.

Since medications have stabilized my RA, it is easy to want others to skip the difficult years and get right on a medication plan. In fact, a month or so ago, my brother sent me a message asking for my personal blog. His neighbor was newly diagnosed and plans to give holistic treatment a try. I was happy to share my story with natural medicine, but almost heard the words: “Please, get informed about medications also,” come out of my mouth.

I stopped before saying those words because I know that during a time in my RA history, they wouldn’t have benefitted me. For some of us, starting out strong with medications from the very beginning makes sense. Others need time to absorb all that is happening to their bodies and require a slower introduction to medications, and another group is not open to medications at all. They need to try a variety of non-conventional remedies.

So, how do we go about supporting newbies, especially when their path differs from our own? Go to HealthCentral and read this article.   

Getting Started on Social Media with Rheumatoid Arthritis

If you are anything like me during my early rheumatoid arthritis (RA) days, you probably have lots of questions — ones that keep popping up at the craziest times of the day. You decide to turn to social media to get some answers. But wait! Let me share a few tips that I have picked up over the years, as well as advice from those in our community.

To read my tips, please visit me at HealthCentral. I'd love to hear your tips also in the comments.  

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. 

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. 

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.

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 40^th 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

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.
 

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.