Friday, May 27, 2016

Perimenopuse and Chronic Illness

For many of us, our diagnosis came way too soon. Before our time we felt old, worn out, and tied to medications. Our bodies experienced changes due to our disease that we weren’t emotionally ready to handle. And just when we feel our bodies have experienced the worst, along comes perimenopause. According to Dr. Christine Northrup, perimenopause is the five to ten years leading up to menopause. For some women, it may even last 13 years.  (Please, no!!!) For me, perimenipausal symptoms started at around 45 years old with a few hot flashes in the morning. Three years later, I’m adding to the list of never-ending symptoms. 

To read more, check out my post at ChronicSex.org.

Wednesday, May 25, 2016

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.




Monday, May 23, 2016

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 
  

Thursday, May 19, 2016

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?     

Wednesday, May 18, 2016

Live Your Life Outside Your Blog: Guest Angela


Several years back I had the pleasure of meeting Angela from Inflamed: Living with Rheumatoid Arthritis at a blogger summit in New York. Since then, I’ve gotten to know her a little better through our mutual involvement in Joint Decisions. Today, I would like to share her with you while also snatching some of her ideas of how she lives her life outside her blog.  

First off, besides sharing the autoimmune disease of rheumatoid arthritis (Angela was diagnosed at 18), we are also both teaching. Angela is currently substitute teaching Pre-K through 12th grade. She often shares humorous bits of her day with us on Facebook which make me laugh but so thankful I am not in that position anymore. Substitute teaching is hard work! However, her true passions are travel, writing, and photography. The goal is to one day combine those passions into a career. I am pretty sure she will make it. She is amazing at writing and photography and I have always admired the places she has visited.

When I talked to Angela on the phone recently, I wanted to find out how she lives her life with RA outside her blog. My challenge for Arthritis Awareness Month is to find ways to share my disease outside of our community without it taking over my life. Angela shared that this has been something new for her too. Like me, she has “tried to not hide, but to blend in with able people”. She too has struggled to make sure rheumatoid arthritis is not her only identity. This is a tough job when you have had RA your entire adult life. What has changed for Angela in sharing her story is becoming involved in RA communities. Sharing stories with fellow bloggers has allowed her see the importance of sharing beyond the community. She now sees how much people misunderstand about RA and wants to help educate the seriousness of the disease.

Early April 2016, photos of Angela on her bike or places she went on her bike started popping up on Facebook. Angela had committed to 30 Days of Biking, which meant she had taken the pledge to“ride your bike every day in April, any distance, any destination, and share your adventure online.” While I loved all her photos and wished I was also getting off the couch and bundling up for some really cold rides, the day she snapped a photo of her swollen feet next to her bike made a huge impact on me. Here she was sharing her bike adventures with very able bodied people while also showing that she was going through a pretty major flare. Wowzie! I loved and admired Angela more than ever. She didn't have to make a huge statement that she was in pain, she just snapped some pictures of how she integrates her RA and life together. In addition to using the hashtag #30daysofbiking, she included #RA and #ChronicLife. Attaching these two hashtags seemed so out of the closet to me but by adding them to a “normal” activity, she opened up her disease for conversation. She reached the goal I aspire to.What Angela did is magic. She showed to herself and the world that she hasn’t given up on herself but that her reality involves days of pain, swelling, and stiffness. The best part of 30 Days of Biking for Angela is that she feels ”proud of myself for getting on my bike despite the flare.”

*Photos taken by Angela.


  


Tuesday, May 17, 2016

Quiet Thoughts: A New Cateepoo Blog

When I originally started this blog in 2008, I didn't really know what I was going to write about. I didn't really even understand what a blog was. I just knew I needed to write and my journal didn't seem to fulfill me anymore. I was struggling with my rheumatoid arthritis at the time so I knew I would include that, but otherwise, I wasn't sure. My blog was a way to work out a lot of feelings and changes I needed to make in my life. I had started using more natural cosmetics and household products at the time, I had decided to stop coloring my hair, I realized I struggled with asking for help or making my needs known, and my kids were becoming homeschooled tweens. A lot was going on. My blog provided a safe place to make sense of all these thoughts swarming in my head.

With Facebook and Twitter, I have been fortunate to join rheumatoid arthritis communities outside of my blog and something I have learned is that it might be better to keep The Life and Adventures of Cateepoo blog focused 100% on rheumatoid arthritis so that people know what they are getting when they visit. So, while I am devoting this blog to rheumatoid arthritis and other health related issues, I have decided to start another  blog focused on all the other miscellaneous thoughts I have. I will be sharing thoughts on family, society, education, midlife, and occasionally politics. I hope to see more of you here at The Life and Adventures of Cateepoo and also at my new addition Quiet Thoughts.  Please feel free to leave comments. Even after eight years of blogging, I get giddy when I see a comment from a reader. And if you have been following me for a while, you might be interested to read today's post on Letting Go: Graduation which shares my thoughts about my youngest graduating from high school tomorrow.  


Wednesday, May 11, 2016

Live Your Life Outside Your Blog: Guest Blogger Molly

Live Your Life Outside Your Blog
by Molly Schreiber  

Hi there. My name is Molly Schreiber and I live in Baltimore, Maryland. I was diagnosed with Type 1 Diabetes when I was 9 years old, in the summer of 1989. As the daughter of a Type 1 Diabetic, I had the “advantage” of being familiar with the disease and the lifestyle changes it involves. I wasn’t so fortunate when I was diagnosed with Rheumatoid Arthritis in January of 2012, at the age of 32. No one in my family had the disease and I didn’t know much about it.

I started my blog in the fall of 2013. At the time I was switching to a new Minimed Insulin pump that had been recently FDA approved. When looking it up online, I found most of  the information I was reading, came from bloggers. I started a WordPress site and just shared a brief (very brief when looking back!) description of my new pump. Over the next few months I blogged about diabetes, recipes, knitting, my cat (I’m so exciting) but my blog took a turn on January 17, 2014.

The first time I blogged about Rheumatoid Arthritis was in January of 2014. Since my diagnosis I had been discouraged, sad. I didn’t think it was “fair” that I had been diagnosed with RA after already having Type 1 Diabetes. I didn’t know anyone with RA and I didn’t truly understand the disease, so I never spoke about it with anyone around me. Big mistake. I would get sick from all of my RA meds and since I work in a pediatric hospital, everyone assumes you have something contagious. I started explaining little by little that it was my disease, not a virus, making me sick. People started asking me questions and I realized I felt better after talking about my disease. I started sharing my blog posts on Facebook.

I came to see my blog as a conversation starter rather than a journal. Sharing my disease online easily translates into additional online conversations (Twitter for example) but also many offline conversations. It gives people something concrete to ask you about rather than the dreaded “how are you feeling today?”. It has also given my family an insight into how I’m doing without me feeling like I’m constantly complaining or talking about my disease. My mom often says that she had no idea how much I struggled, until she read my blog, because I do such a good job of looking like everything is fine.

I would encourage you to talk about your disease as much, or more than, you write about it. Go to conferences and summits. Meet other bloggers in person as often as you can. And most importantly, speak up. Answer questions. Try to talk about your disease to people that don’t have it. The more we can educate those around us, the more understood our disease becomes. We then have more people on our team to fight for a cure and to fight for equal access to treatments and medications.

Twitter.com/MollySchreiber
Facebook.com/Atjax
Instagram.com/MollySchreiber

Wednesday, May 4, 2016

Live Your Life Outside Your Blog: My Challenge

“Live Your Life Outside Your Blog: My Challenge.”
by Cathy Kramer

My first session at HealtheVoices16 was with Trevis Gleason, author and chef who also lives with MS and spoke on Advocacy Offline.  Gleason left those of us at HealtheVoices16 with a lot to think about, but for me, he also presented me with a challenge.  Gleason shared how his cane often leads a person to ask questions which in turn starts discussions. Those discussions create education/awareness for those outside our blogs and communities which in turn allows the education of chronic illness to grow. A bonus is that with awareness, more and more people are able to help one another. I love this idea, but honestly, sharing outside our community isn’t something that comes naturally for me which is why I now feel challenged to do it.

I am a private introverted person. I like mulling over my thoughts and feelings and then letting them go.  My blog is generally the mulling over phase.  But otherwise, I keep my personal issues to myself or a small handful of people.  Of course most people at work, including my past and current manager, are aware that I have rheumatoid arthritis (tough to hide when you are limping around), but I purposely keep a personal Facebook page and a Facebook blogger page so that I am able to live two separate lives.  It isn’t that I am ashamed of my disease, because I am not, but more that I don’t want it to be the focus of my life.  I already have to constantly remind myself that RA is not my main identity. It is a part of many things about me. Plus, depending on where my rheumatoid arthritis is that day, I sometimes feel vulnerable when people ask me about it. Knowing this about myself, my challenge is to find a balance that allows me to grow in all areas of my life, but to also share my experiences with rheumatoid arthritis outside of my blog so that others can also learn to share their experiences safely.

Recently Gleason’s wise words, “when we expose our condition, it starts conversations” became reality. I was walking back to my classroom the other morning when a colleague mentioned that she really enjoys my blog and has shared it with others who live with RA.  What??? So, while I do try to keep my two Facebook pages separate, I have shared a few things such as when I received Healthline’s Rheumatoid Arthritis Award, becoming part of the Joint Decisions team and the exciting things we have done there, and when I participated in HealthCentral’s Live Now Live Bold project.  The Joint Decision posts on my personal page were easy because the focus wasn’t directly on me, but our group as a whole. When I shared the Health Central piece, it was very intimate. I shared stories that were more difficult to relive than I thought they would be.  I really debated whether I wanted to share this story on my personal Facebook page, but upon completion of the project I felt extremely proud of all that I have accomplished over the years and nervously shared it. I was surprised to hear from Facebook friends I have known for years that they also have rheumatoid arthritis or have family members who are living with it.  Family members shared it and several people also commented they have RA which my family never knew.  It started the conversation. 

My life with RA is has been extremely tough at times, but it has also been wonderful at other times and one of my main goals on my blog has always been to share that there is more than pain and limitation to living with RA.  I need to start those conversations so more people are aware that it can both. I want people to see me doing fantastic things in my life but to also be aware that I struggle some days. I want people to know that it isn’t necessary for someone living with a chronic illness to have obvious marks of disease in order to have the disease.  A co-worker once said, “But your hands look fine.” I blew off the comment, but this would have been an ideal time to briefly and gently share more about life with rheumatoid arthritis because if I don’t share it, how can I expect a person to know? My challenge is be more open with my disease offline. I need to share not only so others know they aren’t alone but so they too can feel free to share their story. The more we share, the more we know we are not alone. For me, it might start with a few more posts about rheumatoid arthritis on my personal Facebook page or sharing with a co-worker that not everyone with RA has wonky hands.  I could even be really brave and show her my wonky elbows. From there, who knows?

To help me with this challenge, I am focusing on the theme of “live your life outside your blog” in honor of Arthritis Awareness Month. I have asked several people in our community to share their stories of living life outside their blog or community, so please look forward to those each week.  Along with reading Gleason’s new book, I am hoping to gain some insight from these bloggers into how I can bring better awareness to rheumatoid arthritis (RA) and other chronic illnesses.  


How do you share your disease offline?

*"Live your life outside your blog" theme is my interruption of the session given by Trevis Gleason at HealtheVoices16.

My travel expenses to HealtheVoices16 were paid for by Janssen.  All thoughts and opinions are my own.  



Tuesday, May 3, 2016

When Your Friend Goes Missing

One of the benefits of being a blogger is the friendships you develop over time. I don’t think most of us expect this when we first start blogging. Another thing you might not expect when you first start blogging or join a health community is how sad you will feel when a friend you have never met in person, never had the chance to hug, but feel like you have, goes missing. Your friendship has developed over Twitter, Facebook, long email chats, texts, and phone conversations for several years and when that friend is missing from your daily life, you feel lost. Do you allow them their privacy or text, email, social media the heck out of them until you know things are okay?  Do you wait it out or start thinking of any connection you can to this friend's "real" life?

I did a bit of both. When my good friend Lene from The Seated View became sick and shared on social media that she was being admitted to the hospital, I sent her a few text messages. I got a very short one back the first day or two she was in the hospital which let me know she had read my text.  But when I didn’t hear anything else for several days, I started panicking. The not knowing was making me crazy and I began the search for people in her "real" life. Luckily, I found the email of “The Boy”, as Lene likes to call her long time partner. Fortunately for me, he is a very caring person and emailed me back quickly with an update and continued to do so until she was good to go on her own. In the meantime, Lene's sister also posted on Facebook, which I know was very comforting for a lot of us.

Many of us in the blogger community are in the same situation. We have never met in person the people who have become our life long friends. What do we do when they go missing?  Should we have a contact list we give to those we become close with just in case?  What do we do?  Have you run into this same issue? The good news is that Lene is back home and on her way to recovery.  She now has my husband's email and phone number, just in case.   

Blogging is a way for many of us to work out what is happening to our bodies. We share with others but often get so much back in return.  Sometimes those we meet online become the most special people to us. Lene is that someone to me.  

Thursday, April 28, 2016

Raising a Family with Rheumatoid Arthritis


Raising a Family with Rheumatoid Arthritis
By: Cathy Kramer

In the next few months, my oldest child will turn 20 and my youngest, 18.  It's an exciting time with young adults in the house. I feel fortunate that my diagnosis of rheumatoid arthritis (RA) came after pregnancy, infancy and toddler-hood. However, at 6 and 8 years old, my children were given a quick lesson on what it's like to see Mom develop and figure out a chronic illness.


Many parents choose to hide their chronic illness from their children for as long as possible. In my case, my daughter, who has always been very in tune with me, figured it out around the same time I did.  She sat on my lap and saw the first signs that something was wrong—“Mommy, why are your fingers so big?”  Both kids noticed the struggles that quickly took over my body, and being the caring people they are, they wanted to help me in any way possible. For me, the decision to have an open discussion about what RA is and how it could affect my body was necessary.
  •  I explained in simple terms that my joints hurt, and they both needed to be careful with me, giving specific examples.
  •  I let them ask as many questions as they wanted, and I answered them as honestly as I could.
  • My children were old enough at my diagnosis to know the difference between how I felt before and how I was feeling at the time. I was asked if I was going to die—the worst question a mother can hear from a young child. I felt confident assuring them this was not something they should be concerned with.
  •  I shared that some days would be better than others, and I didn’t know for sure what was going to happen. But I told them that I would always be the best momma I could be. That was reassurance enough for them.

      Both kids were fairly young but needed to find ways to help me, and I needed to let them do that for me.  As a homeschooling family, my children were always with me.  My son was/is my protector. I could always find him next to me at the grocery store ready to help load groceries or at the end of a playgroup ready to grab the lunch bag from me.  I realized when he was old enough to stay home alone how seriously he took his job as my protector. When I told him he could stay home while I went to my rheumatologist appointment, he said, “Are you sure? I don’t want you to go alone if you might cry.”  My daughter, on the other hand, was/is my cheerleader.  At six years old, she developed a system of tracking how I was doing each day. We printed out a calendar for the refrigerator and each morning she would check with me to see how I felt.  She would use a variety of faces to represent my condition.  It helped her to know what I might be capable of doing that day. One day, she went to the calendar and was so excited because I had an entire week of happy faces. When I started seeing a naturopath to work on eating healthier, my daughter cheered me on when I ate well and helped me from not eating inflammatory foods when I was tempted. (She still keeps a watchful eye on my nutrition and food choices.) These were big responsibilities for her to take on as a child, but looking back, I don’t think there was any other way we could have dealt with my pain, the unstable feelings, and the fear that we all had. My children saw me in pain, and they felt better knowing they were helping in some way.

Parenthood and exhaustion go hand in hand. Add in homeschooling your kids until high school, teaching a class or two in the evenings and dealing with joints that don’t want to move – you will probably find yourself with a full-blown case of exhaustion.  But, like we all do, I made it work in the following ways:  
  • I planned naps into my day, especially days I worked in the evening. I was lucky that my kids always stayed close by while I slept. 
  • On days that a nap wasn’t possible, I planned quiet time into our day. The kids and I would lay in bed, snuggled up watching a TV show or reading a book together.   
  • I learned to ask for help from others.  This was hard at first, but with a little practice, it got easier. I asked my husband for more help around the house or to pick up groceries on his way home.  My sister even cleaned out my refrigerator when she was visiting from out of town. 

I have been very fortunate that my family has always been very close. My husband has always made the kids and me a priority. I remember many evenings when he would play with the kids so that I could sneak away to soak in the tub. On the weekends, he would offer to take the kids out so I could rest. My husband and kids have honored my need for alone time when I am experiencing a flare. They are there for me, but also respect that sometimes I need time to cry it out. 

In addition to helping my family find ways to help me, I’ve also learned how to care for myself in the following ways: 
  • I keep my schedule simple. 
  • I plan ahead for home and school so if a flare occurs, it doesn’t feel like the end of the world..
  • If I am flaring, I drop everything I can and focus on myself.
  • I remind myself that rheumatoid arthritis is like a thunderstorm.  When it is active, it is strong and scary, but the calm always comes.
  • I incorporate things I can look forward to into my day such as a chocolate bar, a quiet walk or a movie with the family.
  • I found a rheumatologist that I feel compatible with and don’t hesitate to tell her if I feel I need more attention. If I could go back and redo one thing from my RA journey, it would be to find a rheumatologist I was more compatible with from the beginning. Rheumatoid arthritis is not a disease to take lightly. The first years are lonely. You don’t understand the pain or the feelings of inadequacy that can come with the physical limitations. Until I found a rheumatologist I clicked with, I wasn’t a strong advocate for myself. I needed a support system outside of my family to discuss the tough job of being a mom with an autoimmune disease. Despite having a wonderful family, I often found myself alone in the shower hyperventilating. I wish I had shared the need to either see a therapist who specialized in chronic illness to discuss these feelings or asked if my rheumy knew of other patients I could talk to. Several years after my diagnosis, my naturopath set up a meeting between a newly diagnosed patient and myself. I remember feeling such relief in knowing I wasn’t crazy for having the feelings I had. I also would have asked for physical therapy early on. Once I hooked up with my current rheumatologist, she recommended it immediately.

It took a long time, but I now have more good days than bad.  My daughter mentioned one day that she sometimes forgets that I have RA. That’s an awesome feeling.  My pain and limitations are no longer the focus of our family life. While my daughter says she sometimes forgets, I believe that compassion for others became a part of both of my children’s personalities as they were growing up. While life would have been easier without a mom with RA, I feel that it has helped my children to look beyond what they see in a person to what else might be going on. Plus, they are both proud of me. They have mentioned many times how amazing I am. They have grown up watching their mother deal with a chronic illness. They saw that despite the pain and fear I often experienced, I lived up to the promise I made to them that I would always be the best momma I could be.  I lived up to that promise plus so much more. I made my kids proud of me as a person.  

Balancing RA and a family can be challenging, but you can do it.  You can make your children and yourself proud. Sometimes it doesn’t seem possible at the beginning, but trust in yourself, and you will get there. We each have a story to share that is uniquely our own while sharing the same disease.  Listen to your family when they say they want to help.  Choose a rheumatologist who listens to your needs.  Be an advocate for yourself at your appointments.  You deserve it!

This post is sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions.

Check out the Joint Decisions Facebook page to connect with others in the online RA community, and visit JointDecisions.com for RA resources and tools.