Tuesday, April 25, 2017

#HealtheVoices17



Wow! Wow! Wow! My second year at HealtheVoices was even better than the first year.

Last year I didn't really know what to expect and came home a little overwhelmed from the awesomeness of what advocates are doing for our health community but honestly, I felt a little disappointed in myself. What was I really doing to help the rheumatoid arthritis community?

Throughout the year I have reflected on this and have come to a happy place on my contributions to the community. This reflection lead me to attend this year with a fresh attitude of I am going to learn from others but I advocate on a level that is comfortable and convenient for me. This brought my anxiety level down 100%. This year I could listen and take ideas but also accept that others are also advocating at a level that is comfortable and convenient for them. Amazing how attitude changes everything.

Together We Thrive was the theme of this year's conference and I came home really feeling like we each have a piece to play in the big picture, no matter how big or small our following.



There are so many wonderful things that happened at HealtheVoices17. I will attempt to highlight a few random thoughts that have stuck in my head.
  • 105 patient advocates representing 35 health conditions were in attendance. 
  • Both Facebook and YouTube attended and gave us new ideas on how to use social media for health advocacy. 
  • There is nothing better than having a friend you met last year run up and give you a big hug. 
  • When Janssen says take breaks as you need them, they mean it. In fact, they had rooms set up for socializing or quiet when you needed to get away, plus there was always your room to hide away in when you were "over people", a new term I learned and LOVE.     
  • The kindness and openness of fellow advocates made it so easy to make new friends, even for an introvert. This year I was able to add to my list of friends with and without RA.
  • While each of us has a unique story, we share more in common than you would ever imagine. Each health condition faces stigmas, feelings of inadequacy, struggles, and much more. 
  • It wasn't necessary to relive your journey, but you could. Janssen, Tonic, and attendees just accepted that each person's experience was unique and added to the big picture. 
  • You know you are at the right conference when the question, "what are you doing for self-care?" is the topic at your dinner table.
  • As health advocates, we really are in this together. We're not in competition. 
  • I feel hopeful. I feel that with Janssen's help, patients are making a huge difference in how pharmaceutical companies do business. As a patient advocate from Janssen said, "in the past we worked FOR patients. Today, we work WITH patients." Our voice is being heard.   
  • Most of all, when I was diagnosed in 2004 with rheumatoid arthritis, I never imagined I would meet such amazing friends! Throughout the weekend I felt like I was wrapped in a great big hug.
 

Thank you Janssen and Tonic for taking such great care of us during the conference. You are amazing!!!


Thursday, March 16, 2017

Stress: Taking Time to Look Within

Recently, my border collie Izzy was relaxing on the couch with my husband. From this spot she could see out the front window. Each time she heard or spotted a neighbor passing our house, her body would tense up, her ears straightened and her eyes became focused. Then, just as quickly, she would plop back down on the couch, close her eyes, and return to a restful sleep. She repeated this same behavior over and over. As I observed her, I realized I wanted to be Izzy. The last month or so, my body has been tense from the time I wake up, continues throughout the day, and stays with me in my sleep. Generally I am a happy person, but I have been finding smiles and laughter a rare behavior. It isn't often that I can't change a negative thought into a positive one, but lately my mind has been full of negative, even hateful thoughts.

This isn't me. Izzy reminded me that I needed to get control over what I am allowing to happen to my body and my thoughts.

Step 1. Eliminate Facebook and news for the weekend or until mentally ready. After a weekend away, I just didn't feel strong enough to go back to reading the thoughts and beliefs of friends and family that break my heart and disappoint me. I didn't even have the energy to consider my own opinions anymore. I just needed silence. I needed a break from news in general. I needed to put my energy into positive thoughts. I needed to return to my early days with rheumatoid arthritis when I spent a considerable amount of time looking within. It was then that I realized I am a sponge. I am a great listener, but tend to soak up the feelings others are sharing with me as my own. This isn't a bad thing, unless it consumes you, which is a natural trait for me and something I have been working on for many years now. I realized that 2017 and all the changes occurring in our country have brought back that feeling of needing to absorb the feelings of every group being harmed. I realized it was time to look within again.  

Step 2. Download the app Buddhify with over 80 meditations for "modern mindfulness wherever you go." Each time I wanted to go to Facebook or check my news feed, I did a quick meditation. I am in love with this app. The meditations are fairly short and I don't feel like I have to find a comfortable, quiet place to practice. Basically, I can do it anywhere. I can even do it when eating or snuggled up in bed! The best part is that many of the meditations remind me to smile. I love smiling. It makes my entire body feel energized. Also, the app has given me training that I hope to use as I let a little news back into my life. Information can be known without having to put a story or label to it. I can have knowledge of information without having to get involved. This has been hard for me. I have literally been reading and learning everything I can about new policies taking place. It is just too much. Going forward I hope to focus on a few topics that are truly meaningful to me and then use my involvement as a positive for myself and others. For all other topics, it is okay to just know something about them without needing to get involved. "Let it go," is a mantra I have been repeating all week. It is a good one for me.

Step 3. Read books. While I love the internet, it is not always a safe place for my easily distracted mind. Books allow me to keep my focus for an extended time. I checked out a book from the library, Lilac Girls, for pleasure. (Books are a safe place to absorb the feelings of others.) Then I remembered I had recently purchased The Book of Joy with the Dalai Lama and Archbishop Tutu Desmond. I highly recommend this book for everyone. The focus on learning to be compassionate is exactly what I need to read right now. I need to feel compassion for those close to me that are being affected, but also for those who I disagree with.    

Step 4. Connect. Since the election, I have been obsessed with the news. Almost every conversation I have turns to something happening in politics. At the end of last week I realized I need to let my fears and frustrations have time off so that I can focus on the lives of my family. This week has been so great. I have listened more and felt more connected to others in general. I've tried to look in my children's eyes, to touch my husband's hand more often, to remind myself of how absolutely lucky I am to have the love of my family, friends, students, and job.

Step 5. Create other healthy lifestyle changes. Rather than spend all my free time online, I have started working out...again. I cooked more this week. The house is cleaner!

I am not sure how long I will continue with a break from Facebook and most news, but for now I know I am where I need to be. When I do return to hearing the thoughts and opinions of others and learning more about what is happening to our country, I hope I can react as Izzy - feel the tension and then let it go. Long-term stress is not healthy. For those of us with rheumatoid arthritis or other chronic illnesses, we know the effects it has on our bodies. My joints were starting to feel the stress and I was waking up with an awful headache that wouldn't go away. Those are both big signs to me that it was time to make some changes. I am glad I listened. My body always knows what is right for me.  

Wednesday, February 1, 2017

Leaving Relationship Expectations at the Door

Do your relationships change once you are diagnosed with an incurable disease? Most likely. Read more about my experiences with relationships and the expectations I brought to them in my piece for Creaky Joints.

Friday, January 27, 2017

You are the Expert of Your Own Body


Last week I saw my rheumatologist. She had referred me to a neurologist and asked about the visit. For over a year I have been experiencing numbing in my right leg and complete numbing from head to toe on my left side. We talked about the neurologist's suggestions and how things were going. Then she asked about one of the medications she had prescribed. I couldn't remember what it was at first and then it popped into my head that it was one I never took. My rheumy was curious why. Here's what happened. I filled out a questionnaire when I arrived. Once I was with the doc we discussed my symptoms, I picked my stuff up and headed for the door and she said, "Oh, it looks like you haven't been sleeping well. I am going to send in a prescription for blah, blah, blah. It helps with nerve issues and is an antidepressant. I am not giving it to you for depression but to help you sleep." Okay. Whatever. And I walked out the door. But when I got to my car my brain turned on. "What? Did she just give me an antidepressant for sleep as I was walking out the door?"

I explained to my rheumy that I went home, researched the medication and decided against it. First of all, she was giving me a medication to help with sleep without asking a very basic question, "Why aren't you sleeping?" Well, I have young adult children who are up until three or four in the morning coming and going, cooking, talking, etc. I struggle to sleep well until I know they are home for good. I have a border collie who gets stomach issues in the middle of the night and for some crazy reason only wants me to let her out, my husband is easily awaken and sleeps next to me, I am going through menopause and wake up hot, and I have rheumatoid arthritis which brings issues of its own. The circumstances of my life right now don't make it easy to get consistent sleep, but I don't want to be knocked out. This is my life right now and I want to be aware of what is happening in my home and to the people I love. Plus, do I need an antidepressant? No! Right now, my mental health is good. Let's save that for a day when I might really need it.

I was happy that my rheumy backed me up on the idea that a new prescription, especially an antidepressant, should always be thoroughly discussed before prescribed. It is definitely not a medication you hand out casually as someone is leaving. We both agreed that we should always use caution when adding new medications. I am already on some heavy duty stuff. Great consideration would have to go into adding another long-term pill to the mix. Overall, I felt it was irresponsible of the neurologist but also a great reminder to myself that we ALWAYS have to be our own advocate. We have to do our own research. We have to make our own decisions. In the end, we are ALWAYS the experts on our own bodies.

Wednesday, January 18, 2017

By Nature, I Choose Love

By nature I am not a controversial person. I don't like people being mad at me or even like having disagreements that leave us feeling at odds with each other. It is uncomfortable. However, I am a passionate person who feels deeply. These two characteristics are often in conflict with each other. In the past, the quiet noncontroversial person inside me generally had more strength than the passionate side. Then I became a mother and realized that by sharing my journey, which was often controversial, about co-sleeping, extended nursing, and alternative homeschooling, many were inspired and followed my path. This gave me a sense of confidence I had never felt. When I became a lifelong patient, I realized how staying quiet and not sharing my voice would only damage me as a person who needed to heal. The surprising thing is, by sharing my voice, I found many who agreed with me and many who didn't but either way liked me for being true to myself.

While I have never considered myself to be political, looking back, I probably have been more so than I thought. I think I just wasn't as knowledgeable about how politics affects us as I am today. And with that knowledge, I can't stand back and just hope things turn out for my family, my health, or my beloved country. In my heart, I sincerely feel we have sold ourselves to the devil in hopes of something different. My heart isn't okay with this and has given my passionate side permission to make weekly calls to my representatives voicing my opinion about a variety of issues and to share on social media that I am not okay with what is happening in our country, always crossing my fingers that the information I share is informational and not mean spirted. I don't expect or want everyone to agree with me. (Well, truth be told, I do sometimes wish everyone agreed with me.) Constant agreement would be a mistake because I do enjoy learning how others think on the topic. It helps me to grow.

As a young adult woman working in low income schools with lots of student debt, my philosophies about life were often different than my father's. However, we could have serious political debates  and then leave feeling like we understood the other side a little better, even if we still disagreed with each other. We never left feeling angry or held a grudge against the other one. Instead we left the discussion with a big hug and moved on. This lesson from my dad is the one I want to take going forward. I want to share my thoughts, accept those of others, and then go a step further by seeking out others who are doing wonderful things in this world that inspire me to do the same. I don't want to live my life building up walls and feeling anxiety. I feel the same as Martin Luther King, Jr, "I have decided to stick with love. Hate is too great a burden to bear."



Tuesday, December 27, 2016

Perspective

Imagine this covered in leaves.
My family and I have lived in our current house for 15 years. When we first moved in, the trees and bushes were severely in need of grooming. What my husband decided to do was trim everything down low and let it grow back up. So, in the spring, we waited to see what would happen. Quickly, the tree outside our living room window went crazy. There were limbs and leaves everywhere. We tried to trim it back a bit, but it kept growing back as quickly as we could trim it. Plus, it isn't one that is easy to trim. Since then, I have had a personal battle with this tree. For some reason I decided that I was going to be the one in control. Well, you might guess how that turned out. I have spent countless hours trimming the tree, only to finish and regret it because it always looked odd. Besides, I could almost hear the limbs and leaves chuckling at me as they grew back.

This summer, I followed my usual pattern of attempting to take control of this tree. I trimmed it and then looked out the window and realized how awful it looked. It finally dawned on me that I would never win this battle. I decided I was going to just let the tree do whatever it wanted to do and let it be. Funny how that works when you give up trying to control something. Almost instantly, I saw the tree in a different light. For the first time in all our years living here, I looked out the window and saw that tons of birds found refuge in that mess of a tree. I suddenly started hearing their chirps. Although I was too stubborn to recognize it, nature knew what this tree needed to do.

Life is full of lessons on giving up control. Years ago I had to make the exact same discovery with my rheumatoid arthritis. Rather than overthinking every single thing I did in life, wondering if that was the reason I was in pain, I accepted that the pain was a part of my life. With that realization, I was able to look outside of the pain and see the beauty that has come from living with an autoimmune disease: better understanding of self, stronger voice, wonderful friendships, more empathy for others, and much more.

As we begin a new year, I hope to continue letting go of things I cannot control and focus on the things I know I do have control over: my blog and advocacy, the part I play in my relationships, improving my overall health, and bringing a positive attitude wherever I go. My sister gave me a "Life is Good" shirt this year for Christmas  that says, "All we need is love". Between opening myself to seeing things in a new perspective and focusing on the love I can give to others, nature, my projects, and to myself, I am looking forward to 2017. Happy New Year! Thank you for being a part of my journey in life.  

Saturday, December 24, 2016

Enjoying Christmas Traditions

It's Christmas Eve. I am up early attempting my first tiramisu. I like trying new recipes at Christmas. I am excited for today and tomorrow. My kiddos will be all mine. School is finished, work is closed, and friends are busy with their own families. This is our time together as a family. One that I cherish deeply and realize may change in the future as they create their own families.

Living 700+ miles away from my extended family, we made the choice to stay home for Christmas when my daughter was three years old. Traveling over Christmas was always hectic. The kids didn't like being in car seats, they always had to become reacquainted with family at a time that people were also shoving gifts at them and expecting them to be happy, and with both of our parents divorced, we had multiple houses to visit. It was more stress than pleasure. Instead, we created our own traditions. Every Christmas Eve we have spent baking and preparing for Christmas day. We plan one special event for Christmas Eve. In the past we have made gingerbread houses, went ice-skating in Chicago, visited the Museum of Science and Industry for their Christmas trees around the world, bowling, and more recently we have started eating out on Christmas Eve. Then we come back and the kids open their gifts from one another. It is simple, but enjoyable. On Christmas morning we get up to see what Santa has brought, eat breakfast and finish opening gifts. When the kids were young, we spent the entire day playing with them and their new toys.

We have created wonderful traditions. Yet, as the kids get older, those traditions are challenged. Will they be happy with just the four of us? Do I need to come up with some other activity to keep them excited? As a mother, I see my precious two days as a family more important than ever because I know it may not always be this way. I want our traditions to be something they always look forward to and will eventually want their own partners and children to take part in. But I also want to keep an open mind to the changes that will occur in the coming years. I want my children to know that being with them is what really matters. Seeing their faces light up, sharing a meal together, or just sitting together is all that really matters in the end.

This year, I get to enjoy another year of tradition. Both kids will be home today to help put together our traditional Christmas burritos. My son will be sleeping at home tonight after we go out to eat. I love knowing both kids are snug in their own beds. I have been reminded that we need fruit for the morning in it's special Christmas bowl, a wonderful reminder to me that they still enjoy the traditions we have made together. In the morning, we will wake up as usual and see what Santa has brought. I don't know what next year will bring but today and tomorrow, I am planning to soak in as much of my family together as I possibly can. Merry Christmas and Happy Holidays to all of you.

Saturday, December 17, 2016

Lucky with Rheumatoid Arthritis

One of my personal strengths is the ability to find the positive in almost any situation. But when it comes to my rheumatoid arthritis, I don't feel like I have to look too hard. I am lucky! Sure, I have had hard years where I wondered if I would wake up in the morning unable to move or have wondered if my driving days were coming to an end when both hands were required to put the car in drive. I have experienced more meltdowns than I like to think about and I have driven myself crazy with worry about what my future holds. But when I look around my community, I know I am lucky. Unlike many, I found instant success on the first biologic I tried and remain on it six years later along with Leflunomide, Meloxicam, and an occasional dose of Tylenol. I have come to terms with the fact that my energy levels are often low and have planned my life accordingly. Luckily, I am not someone who feels they have to be Super Woman so I am okay saying "no" if I feel it will use more spoons than I want to share. I know my limits and respect them (most of the time). While I still have a small amount of pain most days and more on a few other days, I can do almost anything I choose to put my energy into doing and in our chronic illness world, that is pretty amazing. I feel lucky! I hope that for all my friends still searching for the right mix or if you are newly diagnosed, this gives you hope. I read your posts and it breaks my heart that you are still struggling. I want to wrap you up in a big warm hug and let you know a day will come when you too will experience better days.

Wednesday, November 23, 2016

You Know Your Body Best

I am excited to share how the mantra "You know your body best," has guided me through parenthood and rheumatoid arthritis.  Thank you Creaky Joints for hosting this post.

https://creakyjoints.org/living-with-arthritis/know-body-best/


Saturday, November 19, 2016

What I Be Project/Joint Decisions Summit 2016


 “I am not my details.” 

In October, I had the privilege of attending the third Joint Decisions Blogger Summit. This year, we met in Philly, the city of Brotherly Love. So, we had to talk self-love! Many amazing things happened, we toured Janssen Pharmaceutical's lab (AMAZING EXPERIENCE), had great speakers share information on self-love, ate a lot, and we met Steve J Rosenfield, creator and photographer of the What I Be Project. Steve was very laid back and explained the purpose of the project, "The 'What I Be Project' is a social experiment turned into, what is now, a global movement about honesty and empowerment. In today’s society, we are often told to look or act a certain way. If we differ from these “standards,” we are often judged, ridiculed, bullied and sometimes even killed over them. I started this project in hopes to open up the lines of communication, and to help everyone accept diversity with an open mind & heart and empower those who feel they suffer for something they may see as a flaw."

Our goal at the summit was to write down a few insecurities we have about ourselves. With everyone in the room having rheumatoid arthritis, that was easy. But I think we were able to look outside of the obvious and into some deep things. For me, it ended up being that I am not a detail oriented person. I try hard, but in general, I don't care about details. They bore me. However, there are consequences to not having an interest in details. The one that often bothers me the most is I feel inferior because I don't have details to spout out and often have to reeducate myself on the same details again and again. I am a feelings person. I realize that about myself, but feelings aren't always the goal of a get together. I find that in my profession, my strengths work well because I help students to feel comfortable in a classroom setting they haven't been in for years, but around other teachers, I can feel like I just don't have enough information to share. My information gets stored in my heart as feelings and observations, not in my mind as informational facts.

I am going to be honest, I felt a little vulnerable doing this project which surprised me. As a feelings person, this is my kind of thing. I shared one other insecurity with Steve, in private, but this is the one I knew has been lifelong and one that I brought with me to the summit. Being part of the Joint Decisions team is so awesome, but as I pack up to go, this insecurity always jumps in my bag and follows me to the summits because I know I will be sitting in a roomful of some of the most professional RA bloggers ever who seem to know EVERYTHING. How do people keep so many details in their brains???

In the end, I loved this project and it has stayed with me. When I met privately with Steve, I left feeling like a weight had been lifted. Finally I had shared this with someone else. He made me feel so at ease that I wanted to sit and tell him every insecurity I had!  When everyone had met with him, he presented the entire group's photos. WOW! WOW! WOW! I wasn't alone. We all have hidden insecurities. It was empowering to know other strong people in the group felt scared, worried, and alone. Plus, I have noticed by owning this insecurity, I have actually felt a little more okay with it. In a recent job review I even mentioned it as a weakness and felt okay with it. It was almost like the insecurity had been owned and them its magnitude reduced so I could focus on more of what I am doing right.  

I love these people! 
My favorite take-away from the summit was meeting with a friend who had a terrible appointment with her surgeon. I found myself saying, "Things are changing. Patients are gaining a voice." This is what Joint Decisions gives me. I feel like I have a voice as a patient.