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. 

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.

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. 

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.
 

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 

How to Stop Yo-Yo Exercising with RA

In October 2017, I turn 50! My sister recently asked me what I want to accomplish before turning a half century old. “I want exercise to be a part of my life again. I want to feel strong,” I said. Until six years ago, regular workouts had always been a part of my life. I wanted them back. I was tired of yo-yo exercising — starting a workout plan, stopping, and starting again.

Sharing this goal out loud somehow made all the difference in the world to me. I was ready. To succeed, I had to take some realities into consideration, such as the fact that I would be 50 soon and that I have rheumatoid arthritis (RA). I stopped working out years ago when my body started responding negatively to exercise. I had to find a plan that would work for my current body.  To read more, check out my newest post at RAHealthCentral. 

The Waste that Comes with Rheumatoid Arthritis

Let me just start by saying that I am not always the best about being environmentally conscious.  I drive a car built for seven people when generally it is just me in the car, I eat out which creates tons of waste, and I don't recycle everything that I know is recyclable. (The last one is due to my border collie who attacks the recycling container so I have to be cautious about things that can hurt her.) But, the environment and the waste that I contribute to it is definitely something I keep in mind. We keep our house cool in the winter, I open windows whenever I can, I'm constantly turning off lights in the house, I either bring my own grocery bags or go without, every spring I am growing plants around my house, etc. It is something I think is important and something I am always striving to be better at. So, how does rheumatoid arthritis fit into my goals of being environmentally conscious?

It started several months back when I received notice from my insurance that I could no longer get refills on my prescriptions at our local pharmacy.  To be honest, I was happy about this because I don't love our neighborhood chain pharmacy.  I was excited that I would no longer have to worry about picking up my prescription either, it would come via UPS. What I didn't realize is that by receiving prescriptions in the mail, I would be contributing to a whole lot of waste.

First, the prescriptions are over-nighted.which means tons of resources are being used just for me.

Here is the size of my prescription:

The prescription does have to remain cool which explains the reason for so much, but let's continue to what I have experienced the last few months and will be doing again this week.

A regular brown corrugated box arrived.  It is quite large for the prescription above, right?

Once I opened the two boxes, I found this very nice Styrofoam container.

Next, I found my prescription wrapped in bubble wrap and 2-3 ice packs plus many sheets of paper.

Let me just say that I was horrified when I received the first package and then by the time the second arrived, I felt sick to my stomach. Included is one other small bottle tightly wrapped. For the time being,I will be contributing to this waste every single month. Aahhhh!!!  Does anyone else feel guilty? What do you do with all of these materials? Please share ways you reuse, not just recycle. 

Live Your Life Outside Your Blog: Guest Sallie Ferguson

Note from Cathy: Sallie is a wonderful friend I met through our work together for a non-profit organization. Although we live on different continents, I learn so much from Sallie and value her friendship. Sometimes I feel like she has packed me up in her suitcase and is giving me a "holiday" experience as she travels through Europe and shares her adventures on Facebook. I learn through these photos to stop and make memories. I also love that she doesn't hesitate to post photos of her swollen feet for the world to see. She is definitely an example if living outside your blog/community.       

Guest Blog – “This is Me”, Live TV and Rock Choir.

Sallie Ferguson

I am a 54 year old Woman with 2 beautiful grown up Daughters and 4 wonderful Grandchildren.  I live in just about the centre of England in Northamptonshire and have been living in the same house for 36 years, since I married my Husband, Fred.   For those of you quick at maths, you will realise that I was married at 18 and just in case you are wondering, my Daughters came along in the first 2 years. 

I have had a varied and fairly successful career; the last 10 years having been spent in Banking. 

So, why you may ask, am I writing a blog about Arthritis?  Let’s back pedal to 4 years ago, I can distinctly remember the strange swellings on firstly my right wrist and pain.  This was followed within weeks by pain in my left risk and more swelling.  “Repetitive strain” I thought and made a mental note to use the iPAD less and take more breaks away from my Computer.  At the time my Mum was very unwell and the symptoms didn’t feel a priority.  Admittedly, travelling for work and attempting to lift a suitcase in to the overhead locker did move the problem up the agenda a little.  It wasn’t however, until my feet became so swollen with the added sensation of walking on broken glass that I decided that I could no longer ignore the symptoms and took the first appointment to see a Nurse at our local surgery.

The Nurse very wisely instructed me to get on top of the pain with Paracetamol and suggested that in her view, I was demonstrating a form of Arthritis that needed blood tests to confirm.  Within a few weeks, by which time Mum had sadly passed away, I was handed the diagnosis of Rheumatoid Arthritis and sent away to research both the Disease and the DMARDs I was told were needed to get on top of the chronic inflammation.

During this time of learning and adjusting I read various blogs and made connections with organisations that I believed could help me and some that I believed I could help.  I have had the pleasure of working with Cathy Kramer (The Life and Adventures of Cateepoo), Lene Andersen (The Seated View) and Jessica Murphy with a common aim to make a difference to a few of the lives of those diagnosed with Inflammatory Arthritis.

My Disease is largely non-visible (on a good day) and I have chosen to capitalise on this fact in a Campaign at work called “This is Me”.  The Campaign is targeted at awareness for non-visible disabilities including, mental health, hearing loss, mobility and many more disabilities.  The message is simple “Don’t judge a book by its cover”.   You don’t know what I am fighting today.  Is my fatigue off the scale, are my fingers working, can I string a sentence together (the brain fog can be a real killer) or am I at my best?  My video and that of many other Colleagues has been shared across our organisation and has helped other organisations to set up similar campaigns.  The Campaign also led to me talking live on National Television during an Annual Conservative Party Conference!

Distraction is a wonderful technique.  I wish I was better at Meditation or better at practising Meditation but so far, I haven’t mastered the technique.  So, what do I do for distraction?  I sing?  Not very good, but I sing – I am an alto in a Rock Choir (I will leave you to look the organisation up and if you are based in the UK, why not sign up).  I join a group of Women and Men every week to sing our hearts out – covering the likes of Don’t stop me now, Living on a Prayer, Something inside so strong, Budapest and many more – I LOVE IT!  Highlights so far have been singing at Wembley Stadium to 85k people and had the great honour of backing Russell Watson when he performed at a local Theatre.

I can honestly say that the pain melts away while I sing.  My Disease doesn’t define me but it has certainly brought opportunity and challenges in to my life and I am loving every moment.

Spiritual Self Care with a Chronic Illness

*While all thoughts and opinions are my own, this is a sponsored post through Chronic Bloggers.  

The older I get, the more I wonder why self care is something we put aside for the weekend or for vacations rather than making it a part of our everyday life.  As a culture, we seem to value those who have a million things to do.  However, I think life has a special way of reminding us that we are meant to take time to be good to ourselves.  When chronic illness becomes a part of our lives, it forces us to take a close look at how we are caring for ourselves and to make some serious changes.

Spiritual self care means something different to everyone.  For me, it is not about religion, but about taking time to reflect on my life.  Rheumatoid arthritis has a way of forcing you to be reflective.  It asks that you constantly question your thoughts, feelings, and actions.  When I can’t control what RA is doing to my body, I can at least control how I am reacting to it.  

Daily Walks- To me, daily walks are magical. It doesn’t matter what my mood, circumstances, or even pain levels, a walk is my way of clearing my mind and making sense of the world.  I don’t know if it is the sounds of the birds chirping, the activity of squirrels running up and down the trees, the occasional fox or coyote on my path, or the opportunity to slow down and absorb my surroundings that my border collie gives to me with each walk, but it works.  

Sunshine- In the spring, summer, and early fall you will often find me sitting on our backyard swing with a pot of tea and a book. Often times I never open the book because the sunshine has grabbed hold of me and taken me hostage. All I can do is raise my head and soak up the sun.  I do require a lot of sunshine (Vitamin D tests prove this), and when I honor this need, I am almost instantly re-energized physically and spiritually.

    

Gratefulness – One of the hardest things to do when you are in the middle of a challenging flare is to be grateful for what you have in your life.  But to me, this is the most important time to do it. During a flare I remind myself to stop and “thank” each of my joints for what they do for me.  Really, our bodies are amazing.  Despite the pain in my knees, my feet and legs keep me going. They take on a lot of stress and deserve to be acknowledged for the work they do.  Do I have pity parties? Definitely. When a flare comes out from nowhere and I am up all night fighting the pain in my shoulder or knee, I cry. I cry hard. I let all the tears out and then I get mad at my disease. It’s okay to do that. Afterwards, I feel like the skies opened up to me again and I am ready to see my disease in a new light. I am ready to “thank” my biologic every Friday morning as I inject myself for the massive changes it has made in my life.  I am able to feel grateful for my family, friends, home, job, neighborhood, and all the other wonderful things in my life. Gratefulness takes practice, but the more we do it, the more we can look around and see how lucky we are to live the lives we do.

Meditation/Visualization – I wish I was that person that took ten-thirty minutes every day to meditate, but I have finally admitted to myself that this is not me. I find that when my mind is on overload, I do meditate for ten minutes and wonder why I don’t do it all the time, but I don’t.  I have accepted that meditation is there for me when I need it. What I am good at is visualization. During my worst days of rheumatoid arthritis when I struggled to lift a cup to tea with two hands, I visualized myself lifting that cup with no problem. Visualization has always been my friend.  When I start to see the worst that can come with rheumatoid arthritis, my friend “visualization” steps in and asks me to redirect my visions. Almost immediately I can see myself jumping out of bed, going for a long bike ride, hugging my family without pain, and much more. Guess what? I am finally there.  I now have more good days than bad. Seeing myself in this place definitely helped get me here.    

What would I say to a friend?- This concept is something I am still working on but I believe has great potential for spiritual growth. Often times we run ourselves ragged.  We keep going and going and going as if our batteries will never run out and then we are surprised when we are stuck in a terrible flare. What I am slowly learning is to look at myself as I would a friend.  A friend can look at me and say, “Hey, you are doing way too much. Slow down!”  I am working on being that friend to myself, reminding myself to take breaks, to slow down and not take on the world.

Even though our society seems to be addicted to filling every single minute of our day with some type of activity, please don’t get caught up in this movement. When you are dealing with a chronic disease, your life instantly becomes different than those around you.  The pain you feel is begging you to slow down and focus on yourself.  You deserve it.  We can’t always manage how much pain our disease is going to dole out, but we can gain control of how we spiritually care for ourselves.

How do you practice spiritual self care? I'd love to hear. 

For more ideas on making self care a priority, check out SelfCareMVMT. Their mission is "to transform perspectives about what it means to be a patient and the way we manage chronic illness, celebrating the greatness in ordinary accomplishments that patients face every day."  I love this. I am ready to join the movement. #selfcaremvmt 

  

Body Image with Menopause and Medications

I remember sitting at our neighborhood pool in my late thirties, early forties thinking this is “the BEST” age to be a woman.  As I looked around at all the women at the pool, my eyes were drawn first to young teenagers with perfect bodies.  They were busy fixing their swimsuits just so wondering if they were too fat, too skinny, too pale, or whatever else teens think their bodies are “too ________”.  I knew they would one day look back at their teen pictures and be amazed at how beautiful they were even if they couldn’t see it now. Then I noticed the women my age.  They walked confidently in their swimsuits chasing after kids aware that they had stretch marks, cellulite, and bits of chubbiness here and there.  Somehow they seemed confident in their bodies knowing that they had changed physically, mentally, and emotionally due to childbirth, jobs, and the aging process. As I lounged on my chair, I too felt confident in my body.  It wasn’t perfect, but it held up well despite rheumatoid arthritis taking a stab at it each and every day. I was eating well, exercising when I could and it had paid off. I was satisfied, maybe even a little proud of the body I had.

Then came new medications and the beginning stages of menopause.  Almost immediately after starting Enbrel, I got my physical life back in addition to 15 extra pounds.  Feeling good, I added on hours to my work schedule which also increased my time sitting.  Over the last five years or so, I have put on another 10 pounds.  I wish I could say I am okay with it, but I am not. I have become that person that cringes when I see photos of myself.  When I look at myself in the mirror, I see a strong woman who has raised two beautiful children, been a good wife of 28 years, a patient/loving teacher, and struggled with rheumatoid arthritis for 12 years.  I don’t see the fat until I see a photo of myself or a pair of “big” pants become too tight. 

From what I have read, I am not alone in body image issues when transitioning into menopause.  Many women experience extra fat, especially in the stomach, as they make the change.  I wish knowing that I wasn’t alone made me feel better, but it doesn’t.  Some days I feel six months pregnant with engorged breasts (yes, those have grown too). When I was thirty years old, that was exciting.  At 48, it isn’t.  I don’t know what the answer is. Some days I work really hard to focus on everything that is beautiful about my physical body and find some success.  Other days, I feel hopeless. Why even try? It doesn’t seem to matter what I eat or how much I move.  But, I don’t want to look at photos with my family and see only my size, I have too many of those where I can see the pain I felt from RA that day. I want our photos to represent the fun, pride, excitement of the day. I wish I knew the answer. 

Help! How do you deal with body image?     

HealtheVoices 2016

HealtheVoices2016 was AMAZING!!!  Walking among 90+ health advocates/patients, I was pretty much in awe the entire time. A lot of great things happened at HealtheVoices16 and as I started this post I realized I could write pages about it but instead have decided to share the most important takeaway I experienced from the weekend and give myself some time to reflect on all the other information I took in. With some reflection, I can share better in individual posts. Plus, posting regularly is actually something I learned I need to be better at doing.

Do you remember when you graduated from high school and either went to college or started working?  All the sudden it felt like the world grew.  You were exposed to people, places, and events that you never knew existed.  This is the feeling I had at HealtheVoices16.  In my eight years of blogging, I have made numerous connections, but all those connections have had rheumatoid arthritis.  Last weekend my world was opened up to 20+ health issues.  

With rheumatoid arthritis as a diagnosis, it is really easy to start believing you are a unique snowflake and your diagnosis alone is constantly dealing with changing health issues, insurance, and prescriptions.  Guess what?  It isn't. No matter what the health issue, we all deal with a multitude of feelings, frustrations, and life changes.

HealtheVoices16 allowed me to meet some of the nicest, most enthusiast people ever.  On Saturday night, we had small group dinners and I didn't know anyone in my group. I was super nervous. As we sat down, our illnesses and advocacy brought us together, but soon we learned we have so much more in common.  Cindy @MyelomaTeacher was a fifth grade teacher just like me.  Anna at DiabetesSisters lives 20 minutes away from me.  In a session, I learned that David at MS Challenge has a book coming out with exercises for all levels.  We can use that in the RA world too. I met Dave from ActiveMSers and Todd from Overcoming Psoriasis who both kept me laughing nonstop. Watch out for those two!  Todd shared a couple of psoriasis tips that I plan to use on my daughter's eczema. Howard from The Itch to Beat Psoriasis is another new friend that I had the privilege of sitting down and talking with. His calm personality is just what I needed after a loud meet and greet. I also got to hang out with two new friends with RA and Diabetes. Molly from And Then You're at Jax who I have been following on Twitter for a while and is a new member of Joint Decisions.  Yay!  Also, Rick from RADiabetes who is a go-getter. Connie from Life Beyond Hepatitis C lead a few of the group discussions I was in.  I wanted to take her enthusiasm home with me.  I was touched by Wendy at Candy Hearts Blog who "cries every single time".  That was the amazing thing about HealtheVoices16, you felt safe crying. I finally got to meet Kirsten from Not Standing Still's Disease & Chronic Sex (if you haven't joined #chronicsex on Twitter or Facebook, I recommend it.)  Kirsten is also new to Joint Decisions. Yay! There were so many other wonderful people that I hope to share with you in other blog posts and so many people I never had the chance to meet.    

HealtheVoices16 takeaway is that we are all in this together.  We are "Better Together".  We can stop feeling like we are alone and start working together as a health community to make better stories for us all.

We were well taken care of at HealtheVoices16 due to the wonderful Tonic Life Communication gals. A special thanks to Deirdre, Kimberly, and Rachel for all you personally did for me. Also, to Janssen for paying for my travel expenses, but mostly for having such an amazing team of people.

*Thoughts and opinions are all mine. :)

I'm BACK!

I find a certain satisfaction from mowing our lawn. My husband does not.  I experience that same feeling you get after you've deep cleaned the house. Plus, I like being outside. So, when my son became old enough that he lost interest in mowing, I took over a few years ago.

The first mow of the season is generally tough. My calves aren't used to pushing a machine uphill and since we don't have a self propelled lawn mower, it is a workout. Last season, I made it almost to the end of the season. But as the grass kept growing higher and higher, I had to admit the hip pain I was in was too much. I couldn't continue. My husband of course took over. It's hard to admit defeat.

Today though, I'm BACK!  I felt strong and pain free as I completed the first mow of the season!  As a bonus, it was warm enough for shorts. (Sorry, no pictures. Super white legs that need a mow themselves don't make for great photos). It feels amazing when you accomplish something that less than a year ago you had to give up on and let others do.

#BesidesMyDiagnosis

One of the many things I love about being part of two new groups, Chronic Illness Bloggers and #ChronicSex on Facebook and Twitter, is that I'm exposed to a variety of new bloggers. I love the idea of embracing our beauty outside of our illness presented by Ness of The Girl with the 5 Lads who writes about family life when chronically ill.  

I feel like my life is in transition. At 48, my meds work most of the time at preventing joint pain, but I believe that in combination with peri-menopause, they are preventing me from losing weight which is frustrating but I am working towards appreciating the new body. My kids are growing up and the need to control their every move is gone, although I still make unsuccessful attempts here and there. I'm not sure how long my job of 15 years is going to last due to state budgets issues. I just feel like I'm reestablishing myself and need to focus on what I love about myself which is why I was attracted to this linky. Enjoy and please share your own #besidesmydiagnosis on your blog or through Twitter.

1. #besidesmydiagnosis the three things about my appearance that I love in the mirror?
       My eyes, smile, and naturally graying hair.

2. #besidesmydiagnosis the things I have read most are?
       Kristin Hannah, politics, and educational materials for the pre-GED class I teach.

3. #besidesmydiagnosis my favourite comfort foods are?
       Pizza, chocolate, and wine.

4. #besidesmydiagnosis my favourite past times are?
       Hulu and Netflix, walks, family time.

5. #besidesmydiagnosis my biggest accomplishment since illness is?
       Raising two beautiful children.

6. #besidesmydiagnosis I feel my best quality is?
       Patience

7. #besidesmydiagnosis my motto/mantra to live by?
       The best thing that can happen to me is happening right now.

8. #besidesmydiagnosis I would love to travel to?
       I'm not really a traveler (anxiety with flying), but I love quiet vacations. - little time in the car but lots of time 
       in nature

9. #besidesmydiagnosis my guilty pleasure is?
       After my evening class ends, I sometimes stop for hamburger and fries and sit in the quiet car eating 
       them.   

10. #besidesmydiagnosis I have many dreams and ambitions such as?
       To one day be a grandma. To know that the job I do is contributing to a better world. To share my gifts while
        also embracing the unique gifts others have to share.  

Why these questions? (From Ness' site)

Many people never describe themselves as beautiful as they do not fit into societies/media stereotype of beautiful. This is rubbish, we are all beautiful so should learn to love ourself. (Question 1) We can find friends through our interests, passions so these may open debates and make people find kindred souls. (Questions 2,3,4) We often focus on negativities and fail to see what we have accomplished since illness and make us thing about our best qualities. (Question 5,6) You can tell a lot about a person by their mantra (Question 7) We all need to hold on to our dreams (Question 8, 10) This is just for fun and giggles (Question 9)

Making My Girl Proud

As a momma, my goal has always been for my children to see me as a whole person - someone who makes mistakes and can own up to them, a person who at times is weak and vulnerable and sometimes even falls apart. Rheumatoid arthritis has definitely given my children experience in all of these areas. They have witnessed me at my worst. As young children they helped me undress, they have been rudely awaken by our border collie to come help get mom out of the bathtub, held me while I cried after rheumatology appointments, and much more. But as a momma, I also want them to see me at my best, to see me pick up the pieces and move forward. To show that I am strong enough to handle whatever comes my way. I want my kids to know that I am forever learning and making myself better as a person. When I show them my strength and make them proud, it is the BEST feeling ever!

My daughter and I decided to take a short spring break vacation together, just the two of us. She has always wanted to see the Rocky Mountains, so we planned a trip to Colorado. We had several things we wanted to do during our short three days, but the main thing was to hike in the mountains. Unfortunately for us, Colorado had a blizzard two days before we arrived so the mountain was covered in deep snow. We didn't let that stop us.

Together we took in the beauty of Mother Nature. We stood and absorbed the absolute quiet, we watched a mouse run on top of the snow, we stopped to observe birds, and we even ran into two separate families from our hometown of Wichita, Kansas. It truly is a small world. I am going to be honest, the higher we hiked, the more difficult it was for me. My 17 year old was jogging up the inclines while I had to stop for frequent photos (catch my breath). But on this mountain I made my girl proud. She saw me keep going.  She saw me push my physical capabilities of trudging up snowy trails. On this path here she said,  "Mom, you are almost 50 and have RA. I hope I'm as active as you at your age."  This will forever be my favorite part of the trip.

The next day we went to Red Rocks Amphitheater. We enjoyed the sunshine and the views.

I am crazy about this girl.

Yep, we walked up and down these steps. 

Rheumatoid arthritis is forever an up and down journey. Some days we struggle and need the help of others. Other days, we prove to those around us and ourselves that we are strong. We may have an autoimmune disease, but we don't let it stop us from making those around us proud.
 

Thanks to Mariah at From This Point. Forward for some great recommendations for our visit to Colorado. Blogger friends are the best!

Pain is a Stimulant for An Introvert

Having an autoimmune disease like rheumatoid arthritis requires a person to constantly question what is going on in their life.  Well, more so if you are an introvert.  As an introvert, I have a constant conversation going on in my head about how I feel, why I feel the way I do that day, and whether or not there is something else I could be doing. I have grown to understand this about myself, but sometimes feel sad for those that care deeply for me because I know they don't quite get this about me.

When I took an Introvert or Extrovert quiz on Quiet Revolution, a website for introverts and those who want to better understand us, I obviously scored as an introvert.  One of the characteristics was "When you're in overly stimulating environments (too loud, too crowded, etc) you tend to feel overwhelmed." Pain is a stimulant for me, a noise in my head taking over my body and overwhelming me.  I find it easier to not share my challenging days with those close to me because I know I don't have room in my head to think about their caring thoughts.  It is just too much noise at the time trying to compete with the pain.  When the pain starts to dissipate, I find it easier to share because some of the noise is gone. Another reason I hesitate to share my pain at the time is that as an introvert I tend to absorb the feelings of others and to be a good listener.  So, while people want to be there for me, they almost always need to share their own experiences or struggles going on at the time. To me this is another stimulant that I don't have the energy for at the time. I know it hurts feelings when people find out after the fact that I was in a lot of pain, but when hurting, I only have the energy for one person: ME. I am not going to lie, it is an ongoing battle to shut people out of my life while I deal with my own reaction to the pain, but the better I understand my own needs, the easier it becomes.  And just so you know, I am never really alone during a flare. I always have that introvert part of my brain talking me through it.  Please be patient with me and know that I appreciate you being there for me when I am ready to share.      

Dry Eyes and Rheumatoid Arthritis

While my joints have been taking a break from the pain of rheumatoid arthritis, my eyes have not. A side effect of RA that isn't often talked about is dry eyes. Last time I saw my rheumatologist, she ran tests to rule out Sjogren's Syndrome. My optometrist recommended Restasis (used to help reproduce tears) at my eye exam in October when I complained that I was waking up at night with extremely dry eyes that burned when I added drops. My rheumatologist agreed with this recommendation. Restasis is a prescription eye drop and like many medications we take, it doesn't work immediately. After a month or two, I expected some relief, but it didn't happen. At six months, I still wake up with dry burning eyes. My very sweet optometrist spent a lot of time on the phone with me Monday discussing other options. He said that Restasis, like RA meds in general, don't work for everyone and I should have seen some improvement by now.  So, this week I will be moving on to new options. What works for you?

Sometimes RA is My Friend

I know we aren't suppose to like rheumatoid arthritis, but I am going to share something with you. Sometimes RA is my friend. Sometimes rheumatoid arthritis is the only friend that won't stop telling me that it is time to rest. It is the friend that isn't afraid of hurting my feelings and telling me I have overdone it. It has taken me a long time, but I have finally gotten to a place where I listen to the first messages sent from my friend RA that something isn't right.

This has been a tough semester. Several things have been going on at home and without a budget in place for Illinois, I have not known if I have a job in January. (I do! Just reduced hours.) Late last week, all the issues that we've been experiencing seemed to climax. The stress I felt was overwhelming, but when I stopped long enough to take a breath, I felt RA talking to me. It was first in my hips and then in my shoulder. I wasn't experiencing a huge flare yet, but RA was telling me that I had taken on too much and if I didn't take the time to care for myself, things would get out of control with my body. I listened. I got my walking shoes on, put a leash on my border collie, and headed out for a long walk. I even turned off my phone. I let the sun shine on my face and let all the tension slowly release from my mind and body. I then came home and did a relaxing Pilates/Yoga video and took a long relaxing bath. It felt good to listen to my friend. Rheumatoid arthritis knew what I needed and luckily I listened. The next day I woke up and all the RA tension was gone! Thank you RA for being my body's reminder to be good to myself.      

What's Not Moving Is Just as Important as What is Moving

Since my bilateral hip injections in September, my hips have been inflexible.Sitting on the floor cross-legged, which I love, has been a struggle for my hips. When squatting down to help a student, my hips feel like they don't want to move with me. After walking for a while I feel my hips tightening up even more. So, I decided to start doing something about it.  For me, it has been Pilates videos and after a few weeks, I'm already noticing a difference.

One morning while doing a video, the instructor said something along the lines of, "What's not moving is just as important as what is moving." Yes! That's so true for rheumatoid arthritis too. So many times when we are flaring, that joint(s) that isn't moving gets 100% of our attention. We forget that our body is an amazing machine that is always working to balance us out. Some days are really hard and we have several joints that won't cooperate, but if we look hard, we can always find a joint that is still moving. It is still trying hard to provide for us. I'll admit that finding the positive in our bodies is a skill that takes time to learn, but like Pilates, the more we do it, the stronger we get at it. What's moving in your body today?