Tuesday, March 10, 2015

What Does It Mean to Leave an Online Community?

It turns out that leaving an online community that you have been a part of for almost seven years is more difficult than I imagined. I've had to ask myself many questions since posting "Letting Go" such as, "What exactly does leaving an online community mean?  Do I stop reading RA posts?  If I do read them, do I 'like' them since I claimed I was leaving the community? Can I share RA posts?"  I feel like I am walking in unknown territory. What's the protocol for leaving a community?  Now that I have publicly announced my leaving, is that really what I want?

In the last few weeks I've been pretty busy in conversation with myself.  Some of the conversations have been encouraging and others have left me frustrated and confused. On a positive note, my writer's block has disappeared since announcing my departure. I feel excited about writing again. Why?  I think sometimes I convince myself that I have to write exclusively about  RA or I will lose readers. This frustrates me because I find it difficult to write regularly about rheumatoid arthritis when it is no longer a day to day adventure for me. Plus, when I do feel good my mind needs to free itself of the concept of pain.

A conversation with my sister reminded me that when I started this blog it is was for me to put my thoughts about life into writing. Having others read it didn't really occur to me. But my conversations with myself have led me to recognize that I like having people read my stuff and I like reading their stuff.  My followers have helped me though some really tough days in ways that family and friends just couldn't. And when I have written about topics other than rheumatoid arthritis, they have always been met positively. My mind keeps asking, "What is really going on Cateepoo?"

With warmer weather and sunshine today, I feel a huge block of stress melting away and everything starting to make sense again.  I remembered back to 2010 when I chose to go back on meds after my two year strike. I was frustrated that I hadn't gotten to the root of what was causing my rheumatoid arthritis but at the same time was in so much pain. I felt trapped by the idea of having to take high risk medications the rest of my life. My naturopath suggested not thinking of it as "all or nothing".  Take the meds for now knowing the decision is always mine if I want to go off again. Blogging is the same.  It doesn't have to be all rheuamtoid arthritis or nothing. In fact, it never has been. I have always loved Pollyanna Penguin's description of me on her blog roll, "The Life & Adventures of Cateepoo (about life with a bit of RA thrown in.)"  She gets what my blog is about so why don't I?  When and why did I convince myself that it has to be all RA or nothing?

Ultimately, I don't know if I can or want to 100% leave the community.  I think my "Letting Go" post was my reaction wrapped up in a lot of feelings: restrictions I put on myself related to my blog, my father-in-law's death, a super busy semester, the need to rediscover myself and having absolutely no idea what that means yet, and just some general hurt feelings. Luckily, I have privately heard back from several people that my voice will be missed.  I really appreciate that.  Most importantly, my conversations have reminded me that I DO have rheumatoid arthritis. Karma rudely reminded me of that when I had a nasty flare right after announcing that my RA is in a good place. (Ha! Take that Cateepoo!) I DO need to know that I'm not alone and others are out there experiencing similar thoughts as me, and I need to let others know they are not alone.  Finally, I have a lot of good friends I have met through the years who I still have a lot to learn from.  They will be my friends either way, but being part of the community just strengthens those ties.

It's been a wild few weeks in my heart and mind.  Luckily, my heart always finds its way.  I just have to be patient and listen. My heart has always known I am more than rheumatoid arthritis and my blog is proof of that.  Why I let my mind think otherwise is beyond my energy levels. What I do know is that I am ready to explore new things in my life.  What those things are, I have no idea yet.  But finding a new path in my life does not mean I have to leave my old familiar one behind. I hope I can still play my part in bringing a positive voice to the rheumatoid arthritis community as my heart and mind feel the need.  Otherwise, I hope you enjoy my other posts reflecting on life.  

Monday, March 9, 2015

What's the Perfect Age?

My 16 year old daughter recently started working.  As we were walking through the mall last week she said, "Sometimes I come home from school, try to take a quick nap, and instead think about how I wish I didn't have to go to work."  My reply, "Welcome to the adult world."  She got a horrified look on her face and said, "This isn't what being an adult is, is it?  If so, why do people want to grow up?"  I of course laughed and let her know this is part of being an adult.  Our conversation then continued to a conversation we often have about growing up and the perfect age.  My daughter likes to ask the question, "Wouldn't you like to be 16 again?"  My answer is always the same, "NO WAY!".  She then quizzes me on whether or not being in my 20's again would be ideal.  "NO," I always answer.  She seems to be searching for that perfect age so that when it comes, she doesn't miss it.

The problem with trying to figure out the perfect age, at least for me, is that every age has been perfect.  I have been happy with each age because they have each brought something important to me.  My teens were about friendships and since I started working at 14, figuring out my work ethic. My 20's were about exploring my profession as a teacher, developing a solid marriage, and figuring out what values I held as an adult.  My 30's were all about being a momma and starting to figure out what life with rheumatoid arthritis meant for me. My 40's have been about rediscovering myself, my marriage, and my role as a momma.  It has also been a time to begin thinking about what else I want to do with my life. I can't imagine not having any one of these stages. Each one of them has been perfect and led me to where I am today.

What we did discuss about becoming an adult is that you have important decisions to make.  How do you want to spend your free time?  What is your passion?  How can you integrate your passion with your career? We talked about the struggles of being an adult, but how each struggle also comes with a reward.  Sure, you have to work, but you also have control over how you spend your time and money.  You get to decide if where you are in life is good or bad. Once you have that figured out, each age is beautiful and necessary.

What do you think?  Has there been a perfect age for you that you'd like to return to?

Friday, February 27, 2015

Bored and Brilliant Project

How often are you on your phone a day?  How many times a day do you pick it up?  Are you happy with your phone relationship?  If you are like me, and you feel like your phone often gets more attention in your life than anything else, you might be interested in signing up for New Tech City's Bored and Brilliant Project. The first step is to install Moment, the app for iPhone users and BreakFree for Android.  This app tracks how often you are on your phone and how many times you pick it up.

Back in January, after a month off work, I decided to participate as the project was launched. The idea is to get you off your phone and spend a little time bored.  Without boredom, we have a difficult time being brilliant.  With smartphones we are able to keep our minds busy 100% of the time and we are losing the wonderful luxury of being bored. For me, I often check my phone while watching TV, during my break at work, upon waking up and going to bed, sometimes even in the bathroom.  I pull it out when I am waiting anywhere and everywhere, even traffic lights.  A few times over the past few years I have been successful in letting my phone go for a weekend and always feel renewed, but the habit picks right back up on Monday.   I know I don't need constant information about interesting topics or even other people's lives all day every day.  I know that my mind needs more breaks than I give it. When I read about the Bored and Brilliant Project, I knew I was ready. I was ready to be more than my face planted in a cellphone for hours.

With Bored and Brilliant  I received a daily email with a challenge such as a "No picture day."  Several came with a short podcast (LOVE podcasts but have reduced this obsession a lot since 2013.) to motivate me as I got started with my day.  They contained little nuggets of information from experts and the lovely host Manoush Zomorodi.  The hardest challenge for me was probably removing an app that I use a lot. At first I thought it would be Facebook, but after thinking about it a little more, I decided to remove my Fitbit app. Since upgrading my phone at Christmas, I have been OBSESSED with checking my daily steps.  It was amazing how that one little change kept me off my phone for longer periods of time.  Overall, the most effective challenge for me was Day 1:  As you move from place to place, keep your phone in your pocket. Or better yet, in your bag.  I just didn't realize how often my phone was popping out of my purse while I was in the car with my husband talking to me, or when I was driving alone and stopped at lights.  It was crazy. On my way to work in the morning, it can take up to 20 minutes to get two miles as I head to the highway. Generally, I look at my phone as I stop and go.  With it in my purse, I noticed a Jeep with a spare tire cover that says, "Life is good."  I see it almost daily now and it is a good reminder to me as I start my day.  How many other things am I missing while checking for new text messages.....again.

During the challenge and a few weeks afterwards, I stayed pretty lean on my phone time. However, when my father-in-law passed away this month, I found my time drastically increasing.  My phone is constantly out again.  Why?  I think I use it as a way to escape.  It's a way of filling up my brain with everything except what it really needs - quiet.  So, now that all of the craziness has calmed down, I owe it to my brain to have some quiet time, to be bored, and hopefully to be BRILLIANT.  I'm going to attempt to finish up this blog post, post-it, attend an online meeting later today, and then close things down.  I'm turning off my laptop, reserving my ipad for Downton Abbey, and keeping my phone in my purse throughout the weekend except to check text messages from students and my family.  I am also rereading a post I wrote in 2013 on infobesity and plan to take some ideas from it.   I'm looking forward to the time away.  See you next week.

Wednesday, February 25, 2015

Are You There God? It's Me, Cateepoo.

Do you remember reading "Are You There God, It's Me Margaret?" by Judy Blume?  I'm Margaret, only an adult version and instead of anxiously waiting for puberty, I often wonder if there are any "I must, I must, I must increase my bust" exercises I can do to hurry the menopause process along.

Now that I have found myself in one of the many stages of menopause, a memory from my first year of teaching elementary school keeps coming to mind.  The gal across the hall from me was my age now.  She'd often come over and say, "I had an accident.  Can you see anything on the back of my skirt?"  I was of course helpful, but in my 23 year old head I was saying, "Geez, at your age you would think you had the whole period thing figured out." HA!  Life has come to bite me in the butt.  What I am figuring out is that menopause is much like going through puberty all over again.  Your period chooses not to follow a predictable schedule, your physical body becomes unrecognizable, and your hormones have a life of their own. No matter what the temperature outside, I am always overheated in the morning.  I take my coat off in class, complain about how unbearably hot the classroom is, then remember to look up and see that most of my students are still in their coats bundled up.  Okay, it's me, not the heat.

Going through a major life change is not easy, that's for sure, but it's not all terrible. Once Margaret started her period she would automatically join "the group". Menopause is no different.  You instantly feel connected to the middle aged woman in a crowd who is also fanning herself non-stop.  While puberty left you feeling insecure about all your new feelings, the stages of menopause bring a certain calm.  You have "been there, done that" enough times that you know what you want and generally how to get it.  You have begun to enter the "bitchy old lady" stage (I often tease my mom that she is solidly in this stage) where you aren't afraid to go after what you want or tell people how you feel. You realize you don't have time for things in life that bog you down and zap your energy.  Perimenopause, which I guess technically is where I am right now,  is a very reflective stage.  You take time out of your day to appreciate the little things. You have satisfaction that your children are growing up well and you were a huge part of that process. You now have quiet nights alone with your husband which might be a little odd at first, but something you quickly grow to love.  So, maybe in the end, the benefits outweigh the annoyances and I just need to remember to go heavy on the deodorant and avoid buying the nice snugly sweaters and instead opt for cool breathable shirts.

*My mom bought me a box set of Judy Blume's books for Christmas one year.  I remember reading non-stop and feeling such a connection to the characters, even if their experiences were quite different than mine. In 6th grade, I read "Forever" and passed it around the classroom for others to read.  It was conficated and I never got it back. We used to joke that our strict elderly teacher was secretly reading it during recess.  Love my Blume year memories.






Sunday, February 22, 2015

Embracing Winter

Growing up in Wichita, Kansas, we definitely had some cold winter days with lots of icy roads and some snow, but we also had little reprieves where the temperature jumped as high as 70 degrees for a few days and it felt like spring.  I remember being pregnant with Alexander in January and running out to buy maternity shorts and a short sleeve shirt and getting out for a walk. In almost 17 years of living in the Chicago area, we have never experienced temperature hikes like that.  If it hits 30-35 in the winter, it feels like a dream.  By February, I feel like I am going to scream.  Morning walks turn into a routine of layering myself with pants, jackets, hats, and gloves only to find the sidewalks covered in ice and the snow stepped on so many times to avoid the ice that it is unstable to walk on. I often feel mentally exhausted when I get home because it feels like I have walked a 40 minute obstacle course. I wanted this season to be different though and at the beginning of this season, I posted on Facebook that I was going to "embrace winter".

I decided it was me, not winter that is the problem.  If I only changed my mindset, I could happily handle the entire winter season.  For the most part, we have had a pretty mild winter until February.  I can't believe I'm saying this, but I started feeling uncomfortable with the lack of snow.  It felt unnatural.  Then the 20 inches of snow hit.  It was gorgeous!  It was almost like nature had decided to gift us with the most beautiful snow ever to reward us for going most of the season with so little.
My husband and I shoveled our driveway and sidewalks three times in 24 hours.  We then took Izzy on a little walk. All seemed perfect in the world. A gorgeous snow and with it a real community feel.  Everyone was out and ready to talk.  When you survive a Chicago winter, it feels like you've earned a badge of honor and we love to discuss the survival.  For a few days, I lived in bliss with the snow. Then it turned black, we had a day above freezing and enough snow melted onto the sidewalks that they are now covered in ice, windchill was-26 for several days, and now I completely remember why I don't like winter.

However, I'm not giving up that easily.  I made a commitment to embrace winter and I am determined to follow through.  Nature seems to be on my side too.  Every once in a while I look outside my office window and I see a bright red cardinal sitting on a branch of one of our trees.  I LOVE cardinals. Just when you think color and beauty is gone with winter, a cardinal appears to remind you otherwise.  If I listen on my walks, I can often hear birds chirping all winter.  The sun rising in the winter on early morning walks is something I have never been able to capture on camera and have finally just given up on and instead soak it into my memory.

Chicago winters are long and they are hard. Embracing them is a challenge, but when people in year long warm climates talk about waking up to 70 degree temperatures in January, I always feel a little sad for them and all they are missing.  I guess after 17 years, this is what it means to be a Chicagoan.  Your feelings about winter go up and down all season long, but you can't imagine life without this season.  

  

Monday, February 16, 2015

Letting Go



 A week ago, my father-in-law passed away.  It came as a complete surprise.  He was working at his church and died instantly. He was found by his wife who went looking for him when he didn't meet up with her for lunch.  I have known my father-in-law for 27 years.  I am going to be honest, sometimes he was frustrating. He was a non-stop talker and tended to hold onto negative memories. Fortunately for me, the two of us never created any bad memories together.  From day one we seemed to click.  I knew over the years that he loved me a lot because he told me, something that wasn't always easy for him to do.  I also loved him.  I always saw the things I love most about my husband in him.  He was a hard worker that always provided for his family.  He was adventurous and before moving out of state, we spent lots of time eating out, taking a few trips together, and just hanging out.  He will be greatly missed. As I write this post, I realize I am mourning for my father-in-law more than I imagined and probably my own father all over again, but I am also mourning because I have finally concluded that it is time to move on and away from the rheumatoid arthritis community. 

Back in 2008 when I started my blog, it was a way of organizing all of my thoughts. Rheumatoid arthritis was a big part of my life, so it naturally became the focus of my blog.  I felt encouraged when I received comments and found virtual friends who were experiencing many of the same issues as me. I felt like I was part of a community.  Late 2010 however, I started a new medication plan and almost instantly my rheumatoid arthritis turned around for the better.  My goal was to continue blogging so that others would see that there is hope in one’s symptoms getting better, something I really needed to read in my early years. What I found though was it is difficult to be part of this community if you aren't in daily pain.  At times I have felt like an outsider looking in.  It's been a bit lonely.  Sadly, I have also experienced that this community is not immune to hurting each other both publicly and privately.  There is a lot of manipulation that goes on between bloggers to maintain their top dog status.  Personally, I don’t have it in me to be a part of it and it is time to let go.  I am no longer meant to be here. Regaining my health has shown me that life and my energy is too precious to be wasted on people you thought were your friends who would rather cause harm to you than help others.    

My life is good. I have a husband that I am crazy about, two teens that are growing up and will be moving on sooner than I want, extended family that continues to amaze me, a job that has wacky hours but brings so much satisfaction, good health, and friends that I can count on when I am having a rough day.  I am a lucky girl.  Allowing myself to be a part of the struggles others have with themselves and people in this community takes energy that I would rather give to the people in my life that want the best for me.  I do plan to continue writing here, but with a new focus.  Some of it may indirectly relate to rheumatoid arthritis, and some of it may not.  Writing feels good to me and while I need to separate myself  from the hurtful people in this community, I refuse to run from a blog that has been so much a part of my life.  Thank you to each one of you that supported me during my rough days.  You will always hold a special place in my heart and my daily wish is that each one of you finds the path that leads your health to also turn around for the better.   If you do decide to continue following me and reading what I have to say, please leave a comment.  They are always appreciated.
   

   

Monday, February 9, 2015

Our Hands Can Picture Project – January 2015: NEW

2015 - A new year with new beginnings for Show Us Your Hands! We now have a brand new website that we hope will bring greater benefits to you.  Also, we are now offering a second edition of our photo book “Our Hands Can” on Amazon at a more affordable price. The new website and book offering are intended to bring awareness to all inflammatory arthritis diseases as well as a place to display all the amazing things are community continues to do with inflammatory arthritis.

To coincide with both the New Year and the new things happening at Show Us Your Hands, January’s Our Hands Can Picture Project theme was NEW.  We asked the community to share photos of something NEW along with their hand.  We appreciate the feedback and inspiration.  Here’s a little sampling of what we received.

Ann Montgomery took matters into her own hands to see the ceramic poppies at the Tower of London, “I wasn't able to get to see the ceramic poppies at the Tower of London but I was able to buy one once the installation was dismantled. It was beautifully presented and a reminder of all those who died in WW1. Here it is in the presentation box ... new to me even though it had spent many months in the moat around the tower.




Melanie Skl kept her tummy satisfied with her warm banana chocolate muffins!  Those look amazing! 




Irene J. Narvaez-Hernandez’s passion for making delicious food for her family is exciting and we appreciate that she shared several photos for us. Keep them coming Irene!  “Even though my hands hurt I manage to make my family happy by making homemade flour tortillas.”   


The winning photo - We shared all the photos with our Advisory Council and they agreed on Kathy Mullis as January’s winner.  Her photo   “tugs at the heartstrings”.   We agree.  Kathy had a very special NEW person arrive in her life – a new grandbaby. Congratulations Kathy!  


Please contact us at infoATsuyhDOTorg with your name and address and we’ll make sure your copy of Our Hands Can Photo Book is sent out quickly. We appreciate each and every photo shared on our Facebook and Twitter pages and encourage you to continue inspiring others with all you are capable of doing with your hands. 

This month’s Our Hands Can Picture Project theme is LOVE. To submit a photo(s), take a photo of your hand(s) with something you LOVE and post it on our Facebook page or on Twitter, tagging us with @showusyourhands.  What do you love?  A pet, child, spouse, grandparent, chocolate, wine, rheumatologist, sweater….whatever your heart wants to share.  The prize for February is another copy of Our Hands Can Photo Book and the winner will be chosen by our Advisory Council. 

Remember that by submitting a photo, you give Show Us Your Hands! peremission to use the photo and your name in our community programs, such as the monthly Our Hands Can Picture Project. 


Monday, January 12, 2015

Show Us Your Hands! Third Anniversary

To celebrate our third anniversary, Show Us Your Hands! is proud to present our new website at www.suyh.org and the new, revised edition of the Our Hands Can photo book, now available on Amazon. These represent a new direction for the organization, one that respects our history while branching out onto an exciting path to unite the inflammatory arthritis community and raise awareness about these serious diseases.

To read more about the new Show Us Your Hands, read here.


Saturday, December 27, 2014

Christmas Eve Surprise!

On Christmas Eve, I was busy preparing food when FedEx arrived with a package. I was a little surprised since I had every thing I had ordered under the tree. When I opened the box, this is what I saw - a gift from Janssen/Tonic Life Communications team!  What a lovely way to remember the courage, determination, and strength that was witnessed at the Joint Decisions summit in Boston. 

Each RA blogger shared a quote.  This was mine.  When going through a tough flare, I always remind myself that where I am now is where I need to be. When I remind myself of this, I can see that a flare often occurred because I wasn't caring for myself.  I was letting stress take over my life and the flare was a reminder to take time to rest and be gentle with myself.  

While my RA is pretty much under control these days, I do have to admit that being at the summit brought me back to some rough days. But, I left feeling encouraged by the strength and positive outlook of our community, knowing that if and when my RA decides to make a comeback, there are plenty of people out there ready to motivate me to keep going strong.. 

Friday, December 12, 2014

Our Hands Can Community Stories: November 2014 – Thankful

Gratitude. Every November (and October in Canada), we all pay a little more attention to what we are thankful for. It makes you feel better to realize those small moments of quiet joy. In November, the Show Us Your Hands! Picture Project asked the inflammatory arthritis community “What are you thankful for?” We got lots of wonderful submissions.

Tia Maria showed us an impressive bruise, saying “I'm thankful for this bruised hand because it signifies finally getting my Remicade infusion and hopefully feeling this flare slip away soon.” Thank you so much for sharing your wonderful perspective with us!


Several people in the community are thankful for their pets. Among them were Trisha and her “cuddle buddy, Chuck … He loves me so much.” We all agree that he has a wonderful face! Jill was thankful for her cat, who in the true (and kind of endearing) spirit of all cats, turned its head just when the camera went off.




Christina submitted her photo on Twitter, saying she was “feeling thankful this weekend cooking with arthritis.” We don’t know what you were cooking, Christina, but it looks good!



Kathleen got a manicure and was “grateful to the lady who made my nails look nice …
Little things mean a lot.” Your hands look beautiful, Kathleen!



Can someone please do a drumroll? It’s time to announce our winner! Congratulations to Ruby for this great photo. Her caption was “When I was struggling to get a diagnosis in the early days one of the things I stopped being able to do was play video games. Specifically guitar on guitar hero and drums on rock band. I’m so thankful that 7 years after my symptoms started I'm playing a little guitar hero here & there.”



Contact us at infoATsuyhDOTorg with your mailing address and we’ll get the book to you before the holidays!

Do you want to be part of the Picture Project in December? Our theme is The Holidays. Take a photo of your hands doing something related to how you celebrate Christmas, Hanukkah, Kwanzaa, Festivus, or anything else, then post it on the Show Us Your Hands! Facebook page or on Twitter and tag your post with @showusyourhands. Submit as many photos as you’d like.

The December prize is a copy of Lene Andersen’s new 2015 The Seated View calendar.

Just a reminder: by submitting a photo, you give Show Us Your Hands! permission to use the photo and your name in our community programs, such as the monthly Our Hands Can! Community Stories.