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.

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.