Thursday, August 20, 2015

Maybe This Is All In My Head

Here's the weird thing about me. (Well,one of them anyhow.)   After 11 years with a rheumatoid arthritis diagnosis, I still catch myself questioning my symptoms.  Not at first.  Not when the pain is at its worst.  It's later, when the pain has calmed down. That's when I question if what I experienced was real, especially when my rheumatologist begins to order tests. Then I start asking myself, "Was the pain really that bad? Was it even there?  Maybe this is all in your head."

Why?  Why do I ask myself these questions?  I have a solid diagnosis. I have tested positive for RA factor. I have multiple nodules throughout my body,  I have slight wonkiness in my hands and feet and I have experienced pretty extreme days, weeks, months, and even years.  Yet when recent x-rays came back not showing any changes to explain the pain I have been experiencing, I felt slightly embarrassed for making a big deal about the pain. Luckily, my rheumatologist thought there might be more to the story and ordered an ultrasound.  The ultrasound showed fluid in my hips thickening (inflammation) and wants me to see a hip orthopedic. Okay. So it's not in my head.  Hip-hip-horray!!!???  Not the answer I really want, but also kind of relieved that I am not making this stuff up.

Saturday, August 8, 2015

Find a Rheumatologist You Trust

"Find a rheumatologist you trust." This was one of the many messages shared during the Joint Decisions VideoChat this month "Shaping Your Story: Managing the Mental and Emotional Challenges of Life with RA."  While I think this message is huge and often takes more time than we would like, I believe it is equally important to find a rheumatologist that trusts you.

When I was first diagnosed with rheumatoid arthritis I naturally assumed I could trust my rheumatologist. However, I came home time after time in tears. It wasn't because he was an awful rheumatologist, he just wasn't a good match for me. My husband often said, "think of him as your drug dealer and nothing else." At the time, I was also working closely with my naturopath who provided an abundance of what I needed in the "trust" category so I was able to adopt this attitude towards my rheumatologist. With my naturopath I could ask questions about the medications I was taking and get an answer back that didn't sound like a monotone commercial stating all the scary side-effects, but instead of someone who actually cared about me. More importantly, I could share my fears and frustrations with her. In the early years, I was extremely vulnerable. I hadn't found my voice yet. I desperately needed someone to trust and for me it was my naturopath. I'll forever be thankful to her for being there for me during the first years while I was learning to trust myself and my decisions.

I've been working with my current rheumatolgoist for five years now. She definitely doesn't meet all my needs (nobody really does, do they?) but I do feel comfortable with her and I trust her. Better yet, I feel like she trusts me too. That's pretty powerful. After a recent weekend SOS to the on-call physician for hip pain, I received an email from my rheumatologist before the weekend ended asking how the prednisone was going and then early Monday morning I received a call from her office with further instructions. After feeling that I was being treated like a newbie with the on-call physician over the weekend, it felt wonderful to get verification that my rheumatolgoist took my word that I was in pain and put things into motion right away.  X-rays were immediately ordered (I'm still practically perfect in every way!!!) and because my rheumatologist believes there is pain as I have stated, we are moving forward with a ultrasound in two weeks to further investigate the pain. Even though I have been feeling pretty well overall for five years, my rheumy has reminded me every appointment that if I need prednsione not to hesitate. Knowing she trusts my knowledge of my body gave me the courage to call the on-call back and request more than four Advil every eight hours.

We are reminded over and over that rheumaotid arthritis is with us for life. The longer we deal with the ups and downs, the better we are at knowing our individual bodies. We are constantly listening and learning. We become the experts on our own bodies and deserve to have a health care advisor that we trust to share our findings with, knowing that they also trust us enough to respond quickly.

Tuesday, August 4, 2015

Becoming Empty Nesters

The last year or so, my two children have been spreading their wings and growing up. They are both independent teens working jobs and enjoying life.  I love who they are.  If I wasn't their mother, but met them somewhere, I know I would instantly be attracted to both of them.

Mothering has been my passion since the day I found out I was pregnant.  Actually, it has always been a part of me. When I reconnect with high school friends, they always say, "I knew you would be a great mom. You were always the mom in our group." When my first was born I spontaneously went from working full time to part-time in the middle of the school year because I wanted to be with him.  When my second was born, I knew my place was at home.  It was where I wanted to be. I wanted to nurse them as long as I could, I wanted to cuddle in the morning and read them all the books they could hold on library visits.  We homeschooled and I was able to spend countless hours with them and the families we chose to add to our clan. When they chose to go to public high school, I found out everything I could to make it a smooth transition (minus crying at freshman orientation to my daughter's horror).  Being a part of their lives has meant more to me than I can ever express.  While many people set huge goals and challenges for their lives, living a simple day to day life with my children has made me feel like a complete and fulfilled person.

As my son starts his second year of college and my daughter begins her senior year of high school I feel excited for them. So many opportunities and experiences are coming their way.  I also feel excited for myself.  For the first time in 19 years, I have weekly date nights with my husband.  We are bike riding, eating out, grilling out, vacationing, and even going camping alone. It feels wonderful to have my husband all to myself again.  One night after work we met for ice-cream. Our attention has been towards our family for so long that is is nice to once again have time to concentrate on each other.

But, I miss my kiddos.  Since all of our days and nights have been centered around them, it has taken a little bit of work to start planning our lives without them being around all the time. It was strange the first time we went away without them.  We've had to go ahead on bike rides because there wasn't a time that worked for all of to go. I don't plan on them being home for dinner. It's strange, but at least it isn't all the time yet.  I think nature is good about slowly preparing you for the day they are gone from your home completely. I still get to see them in passing and if several days go by without a good conversation, my daughter will ask for a Starbucks date.  My son and I often have 20 minutes or so in the morning and the conversations are so interesting that they tide me over until the next one. Being with them is different now, but just as needed and just as satisfying.  

Becoming empty nesters is a balancing act.  One minute we are thrilled to have time alone together to create new routines and hobbies and the next we are sad that we are doing everything alone. Right now they do still live with us, which means we often need to put things on hold to spend time with them when they are available and not expecting them to be around all the time. They are good kids.  I am so proud of them.  I love that they like to share what is happening in their lives and if that means I only get to hear about it every few days or so, I'll take it.  But while they are gone, I will happily spend my time alone or creating new memories with my husband.

Sunday, August 2, 2015

I'm Not an RA Newbie

Having a diagnosis of rheumatoid arthritis for 11 years now makes me a little impatient with on-call doctors. They ask questions such as, "Are you sure it's RA related?" or "Could it be an injury?" and hold off giving you what you know you need.  Honestly, I find it irritating.

For a good two weeks or so, I've had a constant pain in my hips.  I get it off and on and as my beautiful teenage daughter reminded when I had a meltdown on Saturday, "It always goes away Mom."  However, I haven't been able to sleep well or sit comfortably and I think I had just had all that I could handle. I woke up early Saturday morning knowing that I needed something for the pain.

Calling for something to control my pain levels in VERY RARE for me. In fact, I can only remember one other time I did it.  I just deal with the pain.  So when I made the call, I felt vulnerable.  When I am in a bad place with pain, I don't like to discuss it.  I ended up crying as I told the doctor my symptoms and then found myself getting irritated that she had to go through a million questions. (I know she doesn't know me and it is protocol, but by the time I called, I just wanted her to get me what I wanted.)  The on-call rheumy ended up recommending that I take four Advil every eight hours rather than two every four hours and calling back in 2-3 days if not better. I hung up, cried, and in my vulnerable state felt angry. "Obviously, this gal doesn't know what RA pain can feel like."  But, I followed her directions.  However, within two hours, I knew I wasn't going to feel any better. Turns out taking four Advil doesn't do much more than taking two. So, I called back and asked for predisone after frantically searching through all my cupboards for a backup bottle and not finding it. I don't know about the rest of you, but I have a hard time asking for medications, especially when I am in the middle of lots of pain. With more questions, she finally said she would call the prednsione in for me but it would be a while.

A day later, I'm feeling slightly better. Well, at least I have a grasp on my emotions again anyhow. The pain will go away in time. That's one thing I have come to rely on with rheumatoid arthritis. The pain comes and the pain goes. My irritation at myself and the on-call is still there though. I'm frustrated with myself for not keeping the necessary medications on hand for situations like this. It's really my own fault. When I think of the on-call rheumy asking me basic questions, I still want to roll my eyes. I'm not a newbie at this. After eleven years, I think it is safe to say I know what I need. I guess what also burns me up is that I am not a patient that will ask for extra meds so when I do, it's bad.  It's too bad we can't earn some type of badge in our records after we have been dealing with rheumatoid arthritis symptoms long enough that we can skip the initial questions and the rheumy takes our opinion into account from the start.


Tuesday, July 21, 2015

Missing My Walking Partner

My walking partner of eight years is taking a break from walking.  I hope it's only a break anyhow. For the last month my border collie Izzy hasn't been interested in joining me on my morning walks.  Sometimes we will make it to the end of our driveway, she stops, and won't move until I assure her we will go back in the house.  Lately she won't even look at me when I mention getting harnessed and going out. I feel sad.

Many neighbors have mentioned that they admire that I get Izzy out for a walk no matter what the weather. (After 22 inches of snow, she was ready to go!) They have said, "That dog is so lucky."  What they don't know is that I need my walks just as much as her. Walking in the morning is like a morning cup of coffee to me.  Without it I feel cranky and incomplete.  When they say Izzy is lucky, I smile because I know it is me that is lucky.  My sweet Izzy has given me so much by simply being my walking partner- routine, motivation, companionship, and so much more. I credit Izzy for guiding me through my worst rheumatoid arthritis days. There were years when the last thing I wanted to do was get out for a walk, but she patiently walked beside me at a snail's pace. She has been with me on walks where I could shed my tears of pain without my family having to watch.  She has taught me to let things go and to just enjoy the very moment I am in.  She has also been by my side as the medications starting taking affect and my energy and ability to move improved. She is this woman's best walking friend.    

Last year she took a little break when we had a lot of storms. I chose to stay home with her.  This year however, she has taken a long break- about a month.  We have had a rainy summer with a lot of humidity. She doesn't like storms and with age she seems to tire out faster.  On a walk in June she overheated and hasn't been interested in leaving the house again. Needing to get out and get my joints going first thing in the morning, I have been going alone.  Many neighbors have asked where Izzy is.  I know they think she died. Others don't recognize me without her.  We are a pair.  Without her I feel lonely.

I have always told my kids to listen to their bodies.  They know what is best for themselves.  I am trying to give Izzy the same respect.  I ask her every day if she wants to join me and then let it go when she doesn't. She knows why she doesn't want to go.  And she is not showing any signs of pain.  She is still happy to have us chase her around the air conditioned house with a ball or play tug.  She does like car rides so I may take her somewhere new and see if she wants to walk there. If not, I'll just wait until she is ready to be my walking partner again.  On that day, I will welcome her with a big smile of relief.


Friday, June 26, 2015

Staying Active is the Goal

For the majority of my adult life, I have taken pride in the fact that I am physically active. I worked out throughout my two pregnancies and even made time for it when my children were young and I had to workout with them on top of me. During some of my worst rheumatoid arthritis days, I did what I could. Staying active was always the goal.  However, in the last few years, I've really struggled with motivation.  I feel strong when I complete the workouts that I once craved, but they just don't motivate me anymore.  At one time, carving out an hour of my day to workout excited me, now it feels like my time is being robbed.  I finally decided that I am tired of being angry with myself for not working out.  It was time to find out "why" I am not motivated.  The answer came last weekend.

Most likely the answer has been coming to me slowly, but it all made sense last week.  My husband and I took our bikes to a forest preserve that we ride in frequently.  It was crazy full of bike and running teams. We decided to skip this site and move on to a more remote bike path that we haven't ridden in for years.  I was in love.  I didn't want the ride to end.  We stopped and watched a deer for a while, and basically just took in the beauty all around us.  I was rather pleased with my endurance up the steep hills and loved the nature all around us. This is when the answer came to me.  I have entered a new phase of my life called midlife. My needs are different now. The reason I am not motivated to wake up early and get started on a workout routine is because it no longer meets my needs. I now need movement that also nourishes my relationships, my spirituality, or has a purpose.  For years I woke up early and participated in high paced workouts and loved them.  Now, I wake up and look forward to heading out for a long walk with my border collie no matter what the weather is like. I've realized over the years that I look forward to the sound of birds in the morning like some people do to the release of a new song. I laugh out loud some mornings as I watch two squirrels chase each other up and down trees. People are friendly in the morning and say "hi". I like that short interaction with my neighbors.  Before starting dinner, I head out again for a shorter walk.  This walk generally allows my mind to find calm from the day.  During the day, I like to do yoga type moves that allow me to focus on the needs of my body.  Lately, I've had stiff ankles that have required a little more attention.  I look forward to Fridays when I have the day off and mow our large yard. Afterwards, I spend time trimming branches and weeding. This type of exercise is something I can appreciate for the next few days as I look out my window. I'm one of those weird people that enjoy shoveling snow and raking leaves especially if it is with my husband or son. I like the rhythm of these jobs.  On the weekends, I want to get on my bike and ride side by side with my husband. This is when we have some of our very best conversations. At work,  I try to integrate exercise into my day. I walk the four flights of stairs every work day and often take a short stroll during break to get outside, clear my mind, and stretch my legs. I wear my Fitbit constantly and make sure I hit my goal every day. I use it as my guarantee I am not being a couch potato.    

When I take an honest look at what I am doing, I do indeed get exercise. Am I going to win any competitions with this type of exercise, look like a model, or achieve some out of the ordinary achievement? No, but I never was before either.  That has never been my goal. But, the exercise I am getting right now fits who I am right now and that is the best type of exercise. On the days I work, I work long hours on my feet engaging 100% with other people. For an introvert, this is highly exhausting. On my days off, I need activities that fill me with energy again and what I am doing accomplishes that. I don't want to say I am an old gal, but I do realize I am in a new phase of my life and with that comes changes that I want to embrace.  I now want the physical activity I participate in to be meaningful.  Doing a 45-60 minute exercise class no longer accomplishes that need.  Spending an hour or more mowing the lawn (I don't use a self-propelled mower) does. My needs have changed both physically and mentally with age.  I've been struggling with myself because I have been trying to get my body to fall back into workout routines that are outdated for me and no longer satisfy my needs. Staying active is still the goal, but now it requires the elements of spirituality and purpose to complement it.

Wednesday, May 13, 2015

I Found the Person I was Looking For

Often I think back to an evening in 2004.  I finished teaching an evening class at 9:00, walked to my car, and received a call.  I sat in the parking lot absorbing the news from my primary care physician that I was officially diagnosed with rheumatoid arthritis.  I'll forever be thankful to him for patiently explaining the findings from the rheumatologist I had recently visited.  He assured me that once I was on the right medications life would be fine again.

I don't know that I ever questioned my doc's supportive words that life would be okay again, but over the following years it didn't seem like it was in my future.  I was on meds for four years, got better, and then worse than ever. My rheumatoid arthritis went from mild to severe. Since the medications didn't seem to be working anyhow, I decided to take a two year break. It was the supportive words of my health professionals that lead me back to medications.  My naturopath had me take a good look at where I was and where I wanted to be and my primary care physician suggested I start fresh with a new rheumy.  The advice from the two of them was just what I needed.  I went to my first appointment with the new rheumy ready for change and a feeling of optimism.

One thing I always did for myself even during my darkest days of struggling to walk up the six stairs to my bedroom, needing my children to undress me, and finding everyday tasks like lifting my cup of tea to my mouth was to visualize myself well.  I could always see myself hugging my family without pain, skipping beside my children, bike riding with my husband, and walking my border collie with ease. I never let those scenes drift from my mind. When my new rheumy suggested a mixture of methotrexate and Enbrel, I accepted and for some reason knew as I was shooting myself with my first dose of Enbrel that things were going to be different this time with medications.

I was diagnosed in April 2004. From that time until August 2010 when I started on Enbrel, I searched high and low to find someone who was leading a fairly pain-free and active lifestyle. I had no luck.  I found person after person who dealt with the pain I did during my rough years and wondered if I would ever find someone who got better.  "Maybe people don't get better" was a thought I sometimes allowed myself to think. Then my optimism won over and I convinced myself that people do get better but stop sharing online because they are out enjoying life again. I had to believe my life wouldn't be one of constant pain and physical restrictions.

In the five years that I have been on my mix of Arava (went off methotrexate due to increased number of nodules) and Enbrel, I have finally found a person that leads a pretty much pain-free and active life.  She has flares off and on and has to watch her stress levels, the weather, food, and other conditions that contribute to the flares but overall leads a pretty good life.  She has answered "NO" to the following questions from her rheumatologist for some time. "Do you have morning stiffness?"  "Do you ever need to take pain medications?" "Do your flares last more than a few days?"  Who is this person that I finally found?  It's ME. I'm finally the person I searched for all those years.  I am the person who I dreamed about on my most difficult days. Will I always be this person?  I have no idea. What I do know is that at this time my rheumatoid arthritis is under control.  I searched too long and too hard to find the person I have become to worry about what "might" happen in the future. Now is the time to embrace life and be thankful that my visions of wellness came to be.  If it hasn't happened for you, please don't give up. Keep seeing yourself healthy. Know that it may take years for you to find the person you are searching for but that person is out there just waiting to be found.

Wednesday, May 6, 2015

Arthritis Awareness Month - Self Awareness

May is Arthritis Awareness month in the US and I  have a confession. Every year when Arthritis Awareness Month rolls around, I feel anxious. I feel like I am supposed to make all my friends and family aware of what is going on with my body and the bodies of all of us living with rheumatoid arthritis. This feels like a contradiction because I am also asking people to treat me as if I don't have RA. I want to be considered a very capable person, not announce I'm someone who may struggle to lift her cup of tea without notice. (This may also come from the fact that despite blogging about very personal things in my life, I am a private person.)  Plus, one thing I have become "aware" of over the years of living with rheumatoid arthritis is that the majority of my friends and family are going through their own daily life struggles. Announcing that I'd also like them to understand my life circumstances feels a little like when my mom made my siblings and I go door to door collecting for organizations close to her heart - INVASIVE.  What does make me excited about Arthritis Awareness is making sure that every person with an inflammatory arthritis diagnosis is aware of the numerous resources available to them and most importantly, to become aware of who I currently am as a person living with rhuematoid arthritis.  

The online support for those of us living with rheumatoid arthritis continues to grow.  When I started blogging in 2008, there were only a handful of us.  Now, it is hard to keep up with everyone. Social media has grown like crazy and it is easy to find a supporting friend day or night.  Resources like Health Central and Creaky Joints/Joint Decisions are allowing us to find resources on the numerous issues we deal with on a day to day basis. We live in a good time where we can get answers to things that our rheumatologist can't help us with in a 10-15 minute office visit and besides that, as my rheumy says about herself, "I don't have RA."  

An RA diagnosis has meant so much more to me than pain and swelling of joints.  It has meant becoming "aware" of who I am not only with RA, but who I am in general because the two go together.  The tricky part of this is that just when I think I know who I am, I change again. But since flares can come out of nowhere, it is important for me to make a conscious effort to find out who I am and what my needs are so that I can play my part in keeping flares at a distance.

The number one thing I've learned in 10+ years of being diagnosed with rheumatoid arthritis is that stress is a definite contributor to flares.  Over the years, I've worked on figuring out what my stress triggers are and because of that, I have a whole new understanding of who I am.  In fact, I think I appreciate myself more than ever!  I am an introvert.  As an adult I have worked really hard to make conversation in social situations and for the most part I do okay, but it wipes me out. Because of this, I need to be more "aware" of my commitments so that my energy tanks don't run low. I also like to think through what's on my mind before talking about it.  I know it can be hurtful for friends and family to find out afterwards that I was in a terrible flare, but I really can't talk about it until it is over. This also means that I can't take on other people's struggles. I am a good listener, which often gets me in trouble because people like to share their frustrations in life, but often don't reciprocate. Sometimes I just have to distance people so that I can deal with my flare without anyone else's issues becoming the focus. I'm also someone who has a hard time asking for help. RA has helped a lot with this because when going through a tough flare, I don't have a choice.What I have become "aware" of is that people want to help.  It's one of the few ways they feel they can help relieve my pain.  I've learned to let go of a lot of worries.  The wonky fingers and feet used to scare the living heck out of me. Now, I look at the slight changes that have occurred and think of them as accomplishments, just as a I do the stretchmarks on my belly from giving birth.

I am not ashamed of my disease.  I am happy to discuss it (if I am not in a flare), but I don't want it to define me. Rheumatoid arthritis can easily become the focus of my life, but when things are calm, it is time to live life and enjoy all that has been given to me.  Overall, my own personal RA journey has given me the "awareness" of just how great my life is and I appreciate the people in my life who are ready to learn more about it, but definitely don't want it to be forced or untimely.

Sunday, May 3, 2015

Healthline's Rheumatoid Arthriits Blogs of 2015

As I go through my struggle of figuring out my place in the rheumatoid arthritis community, I am honored to be named on this list along side such other inspirational bloggers.

Friday, April 3, 2015

Positive Discipline for Myself

When I was a young 5th grade teacher, I chose to base my classroom discipline on the positive rather than the negative.  I developed a program with two components. As a class, they could earn Class Coupons. Once they earned enough Class Coupons, we would have a party which generally consisted of watching a movie that went along with a book we were reading.  Students could also earn Individual Coupons.  I might pass out Individual Coupons for receiving a complement about the student, homework, answering difficult questions, or showing improvement. The Individual Coupons could be used at the party to buy treats: pop, candy, popcorn, etc. I wanted my discipline program to focus on the positive that my students were doing rather than the negative as that was the behavior I wanted to encourage.  For that reason, coupons could never be taken away.  A lot of surprises came from this program.  First, I had a lot of complements from other teachers which earned my class more coupons.  The teachers and principal commented often on how well my students behaved as a whole.  They motivated each other to do well.  Second, when it was party time, they shared their coupons. At first I wasn't sure this was a good idea, but what I found with a positive system is that students wanted to bring up those who were struggling and share in the overall glory.

Lately, I have been feeling like my life needs more discipline. With crazy work hours, I have found that besides walking, I don't regularly work out.  My weight is at an all time high and my joints are feeling more old age than rheumatoid arthritis. While in comparison to many, my processed food/sugar intake is still low, it is higher than I am comfortable with.  I want to be healthy and I want to have control over what my body is able to do and what I put into it. So, along with my sister, a new positive discipline plan was put into effect.

Here's how it works.  We have started rewarding ourselves for positive actions.  We have the potential of earning $1 per day for each action we feel is needed for the week.  This week I get a dollar for each of the following: meeting my Fitbit step count, working out,  avoiding sugar, and keeping wine to weekends only.  So, this could be a $4 a day week. Four dollars a day?  This might not sound like a big deal, but it is to me.  I keep my jar of money on the kitchen counter and it reminds me all day that my goal is health, much like the Class Coupons I gave and hung in the main section of the classroom reminded my students that our goal was to achieve respect and responsibility for our own actions. When I put my dollars in the jar at the end of the day, I feel like I have accomplished something big. And, over the course of three months, my money has the potential of growing and being used for something I want just as the Individual Coupons I gave my students gave them buying power on party day.

Focusing on the positive works for me.  It motivates me and it keeps me on track. Some days I am not able to accomplish all the goals I want to accomplish, but instead of focusing on what I didn't do, I like the idea of focusing on what I did do. Some days I am only able to put a dollar in the jar, but putting that dollar in the jar allows me a little time to savor the fact that I did accomplish something great during the day towards being the best me I can be. What about you?  How do you motivate yourself to be healthy?