Tuesday, February 20, 2018

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.

Sunday, February 18, 2018

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 

Friday, February 16, 2018

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.  

Thursday, February 1, 2018

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.   

Tuesday, January 30, 2018

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.  

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