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.

Friday, November 18, 2016

"Unfriending" is Healthy

I joined Facebook way back when. Originally, I "friended" everyone who sent a request, but then quickly "unfriended" high school acquaintances that made no attempt to friend my shy 1980's self. Since then I rarely "unfriend" anyone. It seems like no matter who crosses my path in life, I must "friend" them. Therefore, each and every day they are invited into my house when I open up Facebook.  For many, I know I will never have a conversation with them outside of "liking" one of their posts. I know that in general, we share absolutely no interests. But, we remain "friends".

This all changed for me during this election. It finally dawned on me that I don't have enough space in my head to remain friends with people I don't know who are posting what I consider to be "hateful" posts or posts that are totally different than my own beliefs. In fact, I find "unfriending" to be healthy. Why should I allow my mind to be exposed to so much information on a regular basis that shows hate towards the very things I believe in? Plus, I have decided that for some people, it really is better to only know each other casually.  I like that person much better when I don't see the things they "like" or comment on. I'd prefer to comment on the beautiful blouse they are wearing in person than to know what is in their hearts and minds. I realize some may feel the exact same way about me and I hope they also will remove me so we can continue to see a bright side of each other in our occasional meetings.

During this week after the election, I have had intense conversations with family and friends whose philosophies differ from mine and I am so thankful for them. I have learned a lot. I want to learn how others think so that I can grow as a person. Discussion is good. But, I can no longer allow hateful energy into my home when I open Facebook, especially from people I barely know. So, my new policy is that I am not accepting people I have never had any conversation with or see having. If I am interested in becoming "friends", I want to be able to see their page before agreeing to the relationship. And for my close friends and family, I will choose to "unfollow" rather than "unfriend" when I see repeated hateful posts that are not intended to share information but instead put negativity into the world. I don't have the energy for it and it isn't healthy for me.

What about you? Have your practices and policies changed on social media after this election?

Chronic Christmas: Surviving the Holidays with a Chronic Illness

Sometimes you know you need to do something good for yourself, but you keep putting it off.  This is exactly what happened when I received an advance copy of Chronic Christmas: Surviving the Holiday with a Chronic Illness. But once I did, I instantly felt my heart rate going down, I started thinking about things outside of my current crisis, and I started getting excited about the holidays. As I read, I had a few questions for my amazing friend, Lene Andersen, which she has eloquently answered below. My wish for you now is to order the book ASAP (but definitely before December 1 so that you can start following the Advent calendar approach to this book) and once it arrives, put on your favorite pj's, snuggle up with a pot of tea, cup of coffee, or glass of wine, and start figuring out ways both you and your caregiver can make this the best holiday season ever focusing on fabulous day by day self-care tips. Warning: you will crave chocolate as you read this book. Once you start taking advantage of the advice in this book, make sure you take photos of yourself accomplishing these fun activities and share on social media using #ChronicChristmas. Enjoy!

Thanks very much for hosting me, Cathy! Your friendship is one of the shining lights in my life and it means the world to be able to stop by on your excellent blog.

1.  How did you originally come up with this idea for the blog posts? What made you stay excited enough about it that you decided to make it into a book?
When I was growing up in Denmark, my mother would make me an Advent calendar. I remember being really excited about opening a small present every day. In November of last year, I was starting to hear people with chronic illness talk a lot about not looking forward to the holidays because of the stress. Christmas is my favourite holiday and I wanted to find a way to help others really enjoy the whole process of preparing for The Big Day. Somehow these two elements merged in my brain and I knew exactly what I wanted to do.

I had such a good time doing the posts and there was such a positive response to them that I knew I wanted to do something more. A few months later, I had a serious illness and the recovery took a long time. During those months, I had trouble waking up the writing part of my brain until I remembered my Chronic Christmas project. Writing this book helped me access the writer within again and I had a blast doing it.

2. What is your favorite day? Why?
You know, it changes depending on the day and my mood, but there are several that are high on the list. Perhaps not surprisingly, one of the chapters that’s a favourite is the one about baking cookies. A close second is the chapter about celebrating disasters because of the stories I share in it about some of the Andersen family Christmas legends.

3.  Sometimes when life becomes overwhelming, sitting down and doing something good for ourselves seems to add to the stress. For someone in this position, which two days would you recommend they read?
You’re absolutely right — when you’re buried under a mountain of things to do, actually being good to yourself can seems like just another overwhelming task. But taking some time for self-care can actually make everything else seem less stressful. It helps you take a much-needed breath and get some perspective.

If you’re feeling like a stress monkey, I suggest that you start with focusing in. That is, taking some time to think about what is quintessential Christmas to you and trying to shed all the extraneous stuff. And if you don’t feel like you have the time to think, do it while you’re in the shower. There is very little else calling for your attention at that time and it will help you start the day off with a sense of calm, rather than freaking out. The second is about embracing the concept of Good Enough. Remembering that the quest for perfection is futile, so you might as well start thinking about what is enough and stop there. It gives you more time for what is truly important at this time of year.

4. I love that you added ideas for caregivers. Can you explain why saying "I'm setting aside a day to help you before Christmas. When would you like me to come over, and what would you like me to do?" is so important instead of asking, "can I help?"
When you live with chronic illness, your life can be overwhelming and that can make it next to impossible to identify exactly what you need. You may also feel uncomfortable about asking for help, not wanting to impose. When a family member or friend is very specific about giving the gift of a day of help, it can cut straight past all that emotional baggage. And it is the kind of gift that is much more important than another knickknack or sweater you don’t need.

5. As people receive their books, what do you hope they will feel/experience?
The first thing I hope happens is a good giggle about the cover. I love the cover of Chronic Christmas — looking at it makes me happy and I hope others will have the same feeling. As people read the book, I hope they experience a lightening of pressure and that it helps them begin to let go of the stress. Most of all, I hope that it helps them get back in touch with the wonder of the Christmas season and being able to truly savor everything that is joyful about this time of year.

Chronic Christmas: Surviving the Holidays with a Chronic Illness is now available in paperback on Amazon CA and Amazon UK.



Wednesday, November 9, 2016

My Foundation was Rocked


Throughout this election, I have tried to make sense out of why family and friends would choose to support a man that promotes hate. I was raised Catholic, my parents volunteer bussed me to a black neighborhood school from K-6th grade where I had the most amazing teachers and friends, and all throughout my childhood refugees were brought into my home. I was taught to love everyone, no matter how different they may be from me.  As it became clear to me that many friends and family supported the man who promoted everything different than how I believed I was raised, my very foundation felt jeopardized. I have literally cried as I discovered those I admire most would be voting for him. When it was obvious he would become President, I was too numb to cry. That is reserved for today.  Today I will cry. But tomorrow, I will become a stronger person. I will use my heart in the best way possible. I will do what I can to make this a better world. Why? Because last night I became fully aware of what my foundation is. I sat with my daughter, son, and his girlfriend and witnessed absolute disappointment. I saw how hurt they were that people chose hate over love. I was reminded that despite raising my kids without religion, they have grown up to be the two people I admire more than anything in this world. Their hearts are my foundation. My husband and I have created two human beings that realize their privilege yet love others despite their sexual orientation, religion (or lack of it), color, language, etc. Like me, they want health care and education for all. Sitting with them at 2:30 in the morning, I gained my foundation back. I know who I am. I will take my past and mix it with my present to do what I can to make this country the best I can.   
*This is the video my son chose to play last night as a reminder of what could have been.

Sunday, November 6, 2016

Breathe Cateepoo, Breathe

Recently I have been thinking back to 2004 when I started waking up in January with stiff achy fingers and by April, struggled to walk down the stairs. I felt PANIC. I remember it was hard to breathe. I was frightened over what was to come of my body and my future. I have also been thinking about my body as a child, teen, and young adult. Nervous thoughts were never something I could hide. They always showed up in a rash on my chest.    

This last week I have been experiencing two things that haven't haunted me in a long time. I can't breathe and I am covered in a chest and arm rash that intensifies as I think about the current election. Once I know the verdict, I will be able to calm myself either way.  It was the same when receiving my diagnosis. Once I knew, then I was able to move forward in learning how to care for my body. It is not knowing that drives me crazy. This election is important for so many reasons and whichever way it goes, there will be much healing as a country that we will have to do.  This election I am calling on the life lessons given to me by rheumatoid arthritis. When the results come in, I will treat it like I do my RA.  If my candidate loses, I will cry horribly, just I do with each awful flare. I will wonder "why"? But then I will pick myself up and start asking myself what I can do to make the situation better, just as I do with each flare.  If my candidate wins, I will pause and feel gratitude, something I do each day that my body is pain free. But I will also remind myself that I have to continue to do small everyday things to make this world a better place for all just as I have to treat myself nicely each and every day to keep my body going strong.  And, after Tuesday, I am hoping this rash is gone and breathing becomes a natural occurrence once again.

Sunday, October 30, 2016

I Hope My Message Was Heard.

This morning I sent a quiet message to a neighbor I do not know. I hope she received it. I saw her multiple times on my walk as she rode quite a distance behind her father on her bicycle.  Each time I saw this preteen, she was struggling for balance, walking her bike up inclines, and looking horribly uncomfortable. Each time I saw her, I sent messages to her that I hope she received, "You are doing it. You are getting stronger. Keep at it. You are stronger than you think." As I continued my walk, I realized that by sending her messages of strength rather than judging or ridiculing her in my mind, I did something magnificent for myself.  As I continued on, thinking about the week ahead of me, I felt stronger myself. I felt my own strength.  Positive thoughts ALWAYS win.

Monday, October 3, 2016

When I Made My Daughter Proud by Hiking the Rockies with Rheumatoid Arthritis

As a mom with rheumatoid arthritis, my children have seen my at my worst.  But, I also work hard for them to see me at my best.  When I make them proud, it is the best feeling ever!  Read my story When I Made My Daughter Proud by Hiking the Rockies with Rheumatoid Arthritis at The Mighty.

Friday, September 30, 2016

RA Blog Week: Great Blogs From the Week




RABlog week is, at its heart, a way for bloggers to connect. Tell others about the great blogs you have read over the week. Perhaps you have found a gem from a blogger you did not know before or maybe one of your friends shared special insight. Give the high five in print to another blogger or two who participated in 2016 RABlog week. - See more at: http://www.radiabetes.com/prompts-rablog-week/#sthash.aDwRJIdd.dpuf

Wow!  What an amazing week this has been. While I have been blogging and reading blogs since 2008, I am still blown away by all the knowledge we possess as patients. Our voice as RA bloggers is so important. We provide the missing link between patients and the medical world. Thank you so much to everyone who participated this week.

Unfortunately this has been a super busy week for me, so I haven't had a chance to read all the blog posts I would like to. As I go back this weekend and read more, I am looking forward to also checking out the comments of each post. There are amazing conversations going on in the comments section. 

Today's post is intended to highlight other bloggers from the week.  Here are a few of the many I enjoyed.

First off, a big thank to Rick of RADiabetes. I met Rick in April at HealtheVoices 2016 in Chicago.  He is kind hearted, humorous, and a go getter.  One never entered a conference room and wasn't greeted by one of his blogger cards.  :)  I loved Rick's Day 2 story where he shares, "I became active when I took an interest in my health." 

Another friend I met at HealtheVoices 2016 is Molly.  On Molly's blog And Then You're at Jax and through Twitter, you will see a person who never gives up. She has experienced some rough RA days, but her shining attitude always comes pouring through.  On Day 3 Molly asks a great question, "Has anyone else seriously weighed the risks of taking these dangerous drugs? Have you decided not to take them? If so, how do you manage your RA?" This was a question I battled with for six years before finally choosing to use a biologic.

On Day 4, Brenda from Brenda's Brainstorm & Trevor shares a great piece on the use of medicinal marijuana and narcotics. I believe this is a topic that deserves much more conversation and appreciate Brenda getting it going. 

On Day 1, my amazing friend Lene from The Seated View shared her exceptional story with rheumatoid arthritis.  Lene said, "If I were a cat, I’d be down about five lives by now." This year was a tough one for Lene.  I never get tired of hearing her story. It reminds me of the ending to a book I used to read to my kids, The Rainbow Fish. At the end of the book, the beautifully colored fish shares his scales with the other fish so they all are beautiful. Whenever I read Lene's story, I feel like she is sharing a piece of her courage with each of us. 

The best treat of all this week had to be the return of my lovely friend Marianna Paulson to her blog A Rheumful of Tips. When reading Marianna's work, I always imagine the two of us sitting at a coffee shop talking.  Her writing oozes with insight and calm.  On Day 2, Marianna wrote about her responsibility as a patient. She gives this advice, "Find what works for you. Listen with your heart and your head. Gather information. Make your decisions. Correct, if need be. Trust yourself." Amazing.

Thursday, September 29, 2016

RA Blog Week: Wild Card

For Day #4 of The Second Annual RA Blog Week I have chosen a Wild Card and will be sharing advice on how to live well with chronic disease and pain.

Like anyone reading this post, I have experienced super painful days.  I have worried when I went to bed at night that I would not be able to move my body in the morning.  I had my young children help me dress/undress, open medicine bottles, and help me in more ways than I ever thought possible.  I still have days where I get little panic attacks when I think of the possibilities rheumatoid arthritis has in store for me. Despite that, I have created a little survival pack of positives that I practice and would like to share with you.

1.  Practice Gratitude. I will admit to being a "half-full" type person.  I need to find the positive in everything.  But during my darkest rheumatoid arthritis days, it became a struggle to find the positive I so desperately needed.  This is when I started looking for the smallest of things going right in my life.

  • I snuggled with my kids today.
  • I made my husband laugh.
  • I cooked!
  • A cardinal sat outside my window for me to enjoy.
  • I only needed one hand to lift my tea cup today!!!
Gratitude is always a work in progress. However, the more we practice it, the better we become at it. By practicing gratitude, we allow our brain to take a little break from the pain and see all the beauty that is still going on in the wonderful world around us. What are you grateful for today?

If you haven't read Louise Hay, this is a great place to start.  Below are a few posts I have written based on her daily inspirations.


2.  Visualize Yourself Doing What You Love  I wish I could take credit for creating this piece of my survival pack but it was actually my then six year old daughter who came up with the idea.  In the morning when I cautioned her to hug gently, she would say, "Let's imagine your body not hurting. Let's imagine we are outside playing." This soon became something she reminded me to do often. People, seeing yourself in a healthy state is so empowering.  For me it often meant meditating, looking at photos of myself on days I felt like a million bucks, or just turning a thought of pain into one of myself doing the exact opposite of what was happening to my body.  In the video below on epigenetics, they say, "Your beliefs can change your genetic expression." Now, does this mean your beliefs alone can heal your RA?  No, I don't believe that.  But I do believe it is an important piece to the healing process.  In the video, it is said, "Your belief can heal you. But the beliefs of those around you can also influence your ability to express your own belief." Surround yourself with family, friends, and healthcare providers who believe you will get well.    


Below are a few posts I have written on visualization.

What's in your survival pack of positives?