Monday, November 9, 2015

Connecting How I Became My Own Advocate

I constantly tell my adult ESL/Pre-GED students to find connections between what they are currently learning to something they already know. Here's my connection to becoming my own RA health advocate.

When my first baby was born, I was determined I was going to nurse him. I thought I had read everything on nursing I could before he was born. However, what I didn't read was how breastfeeding does not always come naturally for everyone. I was given a lactation consultant in the hospital without much luck and sent home with a bag of formula. At home, my little one and I still weren't getting the latch-on figured out. I could tell he wanted to, but it just wasn't happening which raised my stress levels to new highs. I was determined though and kept trying to move the formula out of my mind. Finally, after an early morning call to our pediatrician, I was connected with a La Leche League leader (a group for breastfeeding moms). She gently encouraged me that I could do it. She asked some questions and quickly figured out the problem. The memory of my son's first real nursing session still makes me cry - 19 years later. Not only was I finally meeting his needs, but I had made a parenting decision that came true with some perseverance.

Having another mom that I could call for help was amazing and I quickly began attending LLL meetings every week. It was amazing to hear seasoned moms share their stories and ask questions of me that helped me become stronger as a mom. They really listened. It didn't take long until I was the one helping others which is an amazing feeling. When my second was born and I chose to tandem nurse, I found a subgroup of moms within the group that helped a seasoned mom with a new concern. (Wouldn't it be cool if we had a similar group for RA?) I took a lot of life lessons from La Leche League, but a few really stood out when I was diagnosed with rheumatoid arthritis.

First, I learned from LLL that my family and physicians are there to help me as a mom, but ultimately, I am the expert on my child. I know him/her in a way that nobody else will. I learned from other moms how to trust myself. If something didn't feel right, it most likely wasn't right for my child. This was true for RA too. When I returned two weeks after my initial appointment with my family physician, he was surprised to see me, but I knew something wasn't right. A referral was made. Unfortunately, I didn't always trust myself in the beginning and ended up staying with my first rheumatolgoist, who wasn't a good fit, for several years. Instead of listening to what my heart was telling me, I used my rheumy as what my husband referred to as my "drug dealer" rather than a partner in my health. It just never occurred to me that I could change rheumatologists. Luckily, I had created a health team of a family physician I felt comfortable with and a naturopath that left me feeling like Super Woman after each appointment. They both reminded me that I know myself well and I needed to follow the journey that fit my individual needs. A new rheumatologist was found. At the second Joint Decisions Empowerment Summit this weekend, I felt a renewed strength in myself. I was reminded of how different each of the participants journeys have been, but how each one of us know ourselves well enough to speak out for what is right for who we are.

Another lesson I learned from LLL was to share positive stories with my spouse about my child in front of him/her and just as importantly, to let our child overhear me saying good things about them when they weren't the center of attention. Rhonda, our Joint Decisions energy break coach, reminded us that we have a private voice always going on and what we tell that private voice is very important. Over the weekend, I was thinking about how sometimes I hear positives about myself from others, but I don't always share those stories out loud for myself to overhear. A few weeks back, I told my class that the homework assignment I was giving was really important and if it wasn't completed I would be angry. A student raised his hand and said, "Even if you are angry with us, you will still have a smile." That was a huge complement to me. With at risk students, the greatest thing I bring to the classroom is my smile. Imagine if I shared that story out loud for my family and friends to hear? Would I feel like I am bragging to say good things about myself or would hearing it out loud encourage me to carry that smile with me more places knowing I am making a small but important difference in this world?

Learning to be your own advocate in your relationships, job, and especially health takes time. It isn't something that just comes naturally for many of us. This weekend I felt very fortunate to be part of the Joint Decisions team of advocates. We weren't just a team of bloggers advocating for ourselves, but I really felt like the entire Janssen and Tonic team was there advocating for us, with us. There were so many times when a blogger would share something we wished was different and a Janssen member would say, "How can we help make this happen?" What a special question to ask.

Good things are happening in the RA world and Joint Decisions is definitely going to lead the way in that. I'll post more about the summit soon, but I am exhausted. We took in a lot of beautiful scenery and memories this weekend that I'd like to spend some time reflecting on.          

Tuesday, October 20, 2015

The Walking Strike is Over!

Not her best picture, but she was too excited to stop for pics.
Izzy's three and a half month walking strike is finally over and it feels soooooooo good!  After a stormy June, Izzy, my border collie, stopped walking in our neighborhood. I could take her to parks and she was generally fine, but just said "no" to getting leashed up for a walk around the neighborhood.  I missed my daily walking partner. In fact, I was starting to feel very imbalanced. I walked alone many days, but found I missed needing a critical eye for my surroundings. I missed watching for clues from Izzy that something was ahead of us. I even found that I was less observant to the day to day happenings in our neighborhood when I walked alone. I also felt less connected to Izzy which made me feel really sad. Walking together has always been our thing. She has always been my motivator to move, even during my worst RA months. She has walked me through a lot of rough days.

Luckily we have an excellent holistic vet. She recommended slowly getting Izzy back into the a walking routine. My job was to give her special treats for leashing up and getting out of the house. After that, I was to let her lead how far she wanted to go. For weeks that meant we walked to the end of our driveway and got the mail. She was okay leashing up when I told her we were getting the mail, but not a walk. Slowly she started leading me around the front yard and we did that for several weeks. Our vet has also been doing chiropractic care of her since she has had a Hiatal hernia since she was a puppy and it gets out of hand when I go long periods without chiropractic work. In addition, she is treating her for a cough. The cough and hernia go hand in hand and could definitely be a reason she hasn't wanted to walk.

On October 11, she woke up and nudged me to walk. I sarcastically told my son we were going on a "walk" and I'd see him in two minutes. But surprise, surprise! Izzy took off and just kept on going!  We did our usual 45 minute walk around the neighborhood and she has been ready to go every day since then! I am a happy girl.

*Being patient with Izzy has also been a good reminder to me that we have to be patient with our own bodies. Sometimes there is more going on than appears.


Twitter Chat Tonight

Becoming a part of the RA community has definitely been a positive step in my RA journey. While I have often followed my own unique path, I have learned so much from everyone I have come in contact with the last eleven years. Plus, I have met some amazing people who I now consider to be great friends who motivate me to be my best with RA and life in general. Tonight, a fantastic team of bloggers and health care professionals will be joining CreakyJoints and Joint Decisions on Twitter Chat. (If this is your first time on a chat, it is actually a lot of fun!)  The theme is creating a strong health care team as well as gathering other supporters in your RA journey. It's a great way to share some of your own tips while also learning from others in the community. Lucky me!  I generally work on Tuesdays, but I am off tonight and can join too!  I hope to see your there. 

Thursday, October 15, 2015

Who Taught You to Age?

It's my birthday. I'm 48 today!!!  Lucky me!

As I have been living out my 47th year on life, I've been thinking about aging. I've never been someone who is afraid or ashamed to say my age and often say it out loud (possibly so I don't forget how old I am. I do that occassionally). Pretending to be an age other than your own has always seemed silly to me. But more than that, it has made it more difficult for us to share the aging process with our younger family and friends. If we never stop being 29 years old, how can we teach our own children the beauty of aging?

Recently I read an article titled Aging Better with a Little Help From Our Friends: Recalling Lessons Learned from the Experts.  In the article, writer Patricia Corrigan asks about aging, "Who taught you how?"  That's an interesting question. Who did teach me how? I know I've made a conscious effort to share my aging process with my children, especially my daughter. I want her to be my different ages and remember my experiences so she has something to relate to. I often share with her why I love being the age I am. It is not something to fear. But who taught me?  Why am I okay with being the age I am?

Here are a few influences in my life:
My teaching mentors.  When I was a young 22 year old in my first teaching position, my mentors were several decades older than me. Actually, one was the exact age I am now. She was returning to teaching after taking years off to care for her children. I remember thinking of her as "old" when I first met her since she was 47, but I soon thought of her as both my peer and my mentor in life. First off, she never mentioned her age as an issue. She got right back into the swing of work and we had some really fun years. She was innovative and honest. I learned from her things about perimenopause that have made me feel quite normal today. Another mentor was in her 50's at the time. She adored her husband after years of marriage. I loved how they were always doing something new- travel, outings, etc. Life was still exciting as was her sex life. Maybe TMI for some, but as a young married woman it was so beneficial to know things didn't have to change with age.
My grandmother:  There isn't a day that goes by that my grandmother and her influence over me don't become apparent. I always knew how old my grandmother was. She never hid it from me. My fondest memory of my grandmother was her excitement over a new craft she was working on. I was never too young or old for her to take me to her craft room and show me all the projects she was working on. I loved that she always had something new going on and her excitement radiated.  My last conversation with her was one where we both knew she was dying. She said, "Don't worry about me. I have done everything in life that I wanted to do." Some might have thought of my grandmother as a person who wasn't very adventurous, maybe even boring, but she was content with herself and her life. What an amazing gift to have shared with me.
Others: There have definitely been others who have shared their experiences with aging that have left me with a positive feeling about it. There is a woman in her 90's in our neighborhood that gets out with her walker every single day and walks. For me, she has reminded me that movement at all ages is key to aging well.

I think what I like most about aging is knowing who I am.  I am very aware of all the positive attributes I have, but after years of experience, I am also aware of the negative. Life is full of adventure no matter what the age and I want to share that with my children and even with my young students. I feel like it is our responsibility to help guide them along.  So, don't be ashamed to share your age. It is really important.

Corrigan would often invite friends to her home to get aging advice. Here is some of their advice:
  • Talk mostly about your life now, not about the past.
  • Travel while you still have the energy and the patience for it.
  • Adapt to change or don’t, but understand that everything changes.
  • Attend to physical ailments, but don’t obsess about them.
  • Wear your good jewelry every day.
What is your best piece of advice for aging?

Tracking Symptoms: Not As Beneficial as I Had Hoped

With the hip pain I have been experiencing lately, I thought it was a good idea to begin documenting my symptoms somewhere. I have this huge problem of completely forgetting about symptoms if I am not experiencing them at the appointments. So, I started using an app called Rheumatoid Arthritis Diary. I like that you can add your symptom intensity, make comments, describe your symptoms and pain, log triggers, exercise, medications and treatments, and test procedures. You can even email it to yourself and print it out for appointments.

When I left for my appointment with my hip doctor yesterday morning, I was so proud of myself for having everything in print. I circled a few things that I really felt were necessary to discuss. I felt confident that this time I wouldn't forget anything. I would finally be able to give a full description of how I have been feeling. Unfortunately, I would have been just as successful going in with a blank memory.  Here's how the appointment with Barbara went:

B: How are the hips?
C:  Still hurting.
B:  But are they better?
C.  Yes, but the pain has changed.
She listens and has me get up on table as I explain that the pain isn't limiting my activities other than wiping my energy and they don't hurt today. (emailing her to complain last week took care of that I guess).
B:  Does this hurt?  (moves my leg)
C:  No.
B:  Does this hurt?
C:  No. (moves leg in another direction)
She continues moving my legs and me answering "no". Finally she says, "Well, I don't know what to do for you."  I was being dismissed.

I don't really know how to explain the pain I have been feeling. It moves around and can be very mild or very intense. I felt like an impostor sitting there. All the sudden I forgot all my notes and felt like I had made all this crap up in my head. I panicked. "There isn't anything they can do to help me."  I started crying. I mean really crying....hard.

Again, this is why I love Barbara. She stopped, took a deep breathe and explained that my rheumy asked her to do a specific job and she did it.  She then gave me a big hug and asked if I would like something for the pain at night. "Yes, please."

I left and tried to reschedule my November appointment with my rheumy for sooner but there wasn't anything. The receptionist wanted to know if she could leave a message with the doctor and the tears came again. "No, I can't control myself to talk about it now.  I'll email her."  All in all, a disappointing morning. However, the pain is gone for now.

Lesson for me:  Complain about the pain more often and maybe it will just disappear.

Friday, October 2, 2015

Rheumatology Appointments

With my rheumatoid arthritis trying to make a comeback in my life, I've found myself starting to track my daily symptoms once again. When I go to my next appointment with my rheumatologist, I want to be able to make the most out of my appointment. If I'm not experiencing the symptoms at the time or not taking the time to write down some notes, I forget everything! So, I'd love your feedback in learning how you do things so that I can improve my own visits and also to share in a project I'm doing with Joint Decisions.

How do you prepare for appointments so that you get the most out of your appointments with your rheumatologist?

*If you would like to comment, please leave below or contact me at 

Sunday, September 27, 2015

Bilateral Hip Injections

For the last year or so, my hips have been experiencing pain/pressure off and on. Slowly the pain has become more intense and about two months or so ago, I called and asked for some relief.  I was put on Medrol Dosepak and for a short time felt better.  In the meantime, my rheumatologist sent me for x-rays which showed NO bone destruction.  (Yay!!!)  I then had a sonogram which showed inflammation in my hips. Two weeks ago I met with Barbara, my new hip orthopedic, who I instantly fell in love with. Bilateral hip injections were scheduled for the following week.

In my 11 year experience with rheumatoid arthritis, I have definitely experienced my share of cortisone injections. Except for the one in my hand for trigger fingers, I've handled each one without any problems. But with the hips, it was going to be a lot more involved. Since x-rays were needed to guide Barbara to the location of the injection, I was required to show up at the surgery center which involved all the stages of surgery: pre-surgery, shots, and recovery.

I was told beforehand that a designated driver was required. My son came with me and was greeted with a room full of soft drinks and snacks. He was also given a buzzer so he knew when the procedure was finished.  I was taken back to the pre-surgery room where I left a urine sample, a million questions were asked, and my blood pressure was taken. Not surprisingly, my blood pressure was high and they kept rechecking it. I was really nervous! Finally the nurse left and asked me to think of calming thoughts. That must of worked because I was then wheeled back to an extremely cool surgery room. The only other time I have been in surgery was for the c-sections of my two babies. I imagined my husband sitting beside me as he did then and that instantly brought some calm to me. There were three nurses, the x-ray technician, and Barbara in the room. They were all very comforting. I appreciate the nurse that let me squeeze her hand throughout the procedure which took about 10-15 minutes. I did peek to see how Barbara was using the x-ray to inject the cortisone. Pretty cool. Then I was taken to recovery where my son met me and hung out with me for a while before we headed home. From start to finish I was there about two hours.

Afterwards, I was extremely tired. I am a little bruised, but not bad. On Day 2 I started to feel some relief. One thing I forgot about chronic pain is how much space it occupies in your head. When the pain is reduced, it's like you are floating because your mind is so light.  Today is Day 5 and I woke up with a stiff right hip and some pressure that has returned. Hopefully it is just a fluke and after a morning nature walk with my daughter, it will work itself out and I will be on a my way to moving with ease again.

Wednesday, September 16, 2015

I'm In LOVE!!!

I'm in love with the newest addition to my health team - a hip orthopedic. For me to say I LOVE a doctor means a lot. I am generally skeptical of new doctors and it takes a while to warm up to them. Today was so different. Barbara, that's how she introduced herself, didn't keep me waiting long which is always a plus. I instantly felt comfortable with her. Maybe I liked her introducing herself by her first name or maybe it was the way she looked right in my eyes as if she cared. She shared that she had looked over my sonogram results and had talked to my rheumatologist right before walking through the door. Here's where it got really good. Barbara said, "Dr. Jo*** would like for you to have cortisone shots in the hips. What do YOU want?"  What??? Did she ask what I wanted??? Yes, she did!!!! Unbelievable. I have never had a doctor, minus my naturopath, ask what I wanted.  I think she sensed that I was floored and sat down like she had all the time in the world to listen to my symptoms. Then she said, "I am not going to have you go through a bunch of tests here in the office because we know what is going on and I don't want to put you in more pain." What???  Someone is worried about my pain level?  Yes!!!  I just keep falling more in love with Barbara (hopefully she didn't notice the big red hearts shining in my eyes). Another thing I loved about her is she didn't sit at the computer typing information in. She had a piece of scrap paper with her. She asked if I was married, looked at my finger and said, "Looks like it."  She asked if I had kids and if I worked. I told her I am a teacher. She said, "I somehow knew you were going to say that." She then went through what to expect from the procedure and asked, "Is this what you want to do?" Oh Barbara, in a few short minutes you made me feel like a person with thoughts and feelings about my own health instead of a number passing through your office. Thank you so much for that! It means more than you will ever know.

So, next week I get my shots. I am more than ready for the pain to be gone. I have had cortisone shots in a lot of places on my body, but this will be the most complicated so far. I have to bring a driver. The procedure is completed in the out-patient surgery department (even though it isn't surgery!) so that they have x-rays available to lead them to the right area of the hips. A local anesthetic is also given. It sounds a little scary, but I'm up for it. Wish me luck!  

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.