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:

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?

Wednesday, September 28, 2016

RA Blog Week: Biologics and How I Fought AgainstThem for Six Years

Day #3 of the Second Annual RA Blog week is here. I hope you are learning lots from the amazing people in our community. 

Today we are discussing biologics, a topic that I avoided for six years.  When my first rheumatologist gave me the brochures of two different types of biologics with instructions to "go home and read" along with possible side effects that come with them, I immediately threw them in the trash without ever looking at them.  Read below a post I wrote in June 2016 about my long journey with biologics.

For the last six years when I auto-inject my biologic into my leg, I have a ritual of breathing in, mentally saying “Thank you for improving my life, “and breathing out. When I started using a biologic in August 2010, it almost instantly changed my life. I was in more pain than I wanted to admit, could barely move my body, and it was starting to wear on my relationships. It was time.

I fought using a biologic for years.  The monotone manner my rheumatologist used as he went through the side effects along with the commercials that backed up my fears, I was very slow when it came to warming up to biologics. When my rheumatologist first introduced the idea to me through brochures, I took them home and trashed them.  No way would I EVER go that route. I would try everything else before I took the leap of using a biologic.

Try everything else is exactly what I did. I hooked up with a naturopath the same year I was diagnosed. She guided me through an elimination diet that got me off prednisone about nine months later. Working with her honestly saved me during those first years. I desperately needed emotional support and received zero percent of that from my rheumatologist. Looking back now, I think if I had changed rheumatologists earlier, I might have taken a slightly different path, but who knows. I don’t regret the path I took. Each visit with my naturopath empowered me. She taught me to really listen to my body - a gift I will always value. I sought out other alternative practitioners also for acupuncture, other body manipulations, supplements, etc. I believed 100% that I could get my rheumatoid arthritis under control with little to no medications, despite my naturopath telling me otherwise. But I learned so much about myself during this time. While it was physically painful, the pain kept me focused on making other changes in my life. I made myself a priority and let a lot of guilt I had bundled up my entire life go free.

Six years into my diagnosis, I had been on and off  RA medications. I think now that it was when I had made the necessary changes in my way of life that I was ready to accept that I needed a biologic. Again, it was my naturopath who asked the question, “Are the side effects of a biologic worse than not being able to live your life?” This was the question I needed. She talked me through my goals in life and without telling me what to do, strongly agreed that starting a biologic was in my best interest.

Sometimes in our community I feel those of us who choose an alternative route are looked at as being irresponsible. The idea behind this is that rheumatoid arthritis is a serious disease and action should be taken quickly. I agree, RA is serious, but, we are each so different. I NEEDED to go through this long phase of denying a biologic to gain control over my emotional and spiritual body. By rejecting a biologic for so long did I do permanent damage to my physical body? I guess I will never know for sure. I do have some permanent damage to my knee and toes, numerous nodules that have continued with meds, and a few fingers that are slightly wonky. These changes could have occurred even while on medications. But if they are due to not starting on a biologic right away, they seem small in my mind now because those first six years were what I personally needed. When I finally made the decision to use a biologic, I KNEW it would work. I embraced it fully and it has worked amazingly well. I have no regrets in using it.

Please don't let family, friends, doctors, or even the RA community decide the path that is best for you. Take time to make the decisions that are fit with who you are. Because I listened to my heart, twelve years after my diagnosis, I feel optimistic. I don’t feel like my rheumatoid arthritis is the end of a happy life. My RA is one of the many components that have made me into who I am today.    

Tuesday, September 27, 2016

RA Blog Week #2: Active VS Reactive Patients

Day #2 of the Second Annual RA Blog Week asks that we share how to move towards being an active patient.

Motherhood was my first step into becoming an active patient.  With my children only two years apart, I chose to tandem nurse them and because of this, replied heavily on the support I gained from the non-profit organization La Leche League.  In my weekly meetings with other nursing moms, I was given a very special gift.  I was given the courage to understand that ultimately, as my childrens' mother, I know them best.  Medical professionals are there to guide me, but it was me who watched my children, who knew when things were off.  It was this confidence that took me through years of severe eczema with my daughter.  Since I was the one awake with her into the night as she scratched her skin until it bled, I knew when medications weren't working and when we had tried them long enough. It is amazing how strong you become in asking questions, reading on your own, opening your mind to alternative treatments, and even realizing when your physician is out of ideas when it is your children who are hurting. By the time my rheumatoid arthritis story started, I was used to questioning doctors, to going home and reading before making decisions, and most importantly, listening to myself.  Ultimately, I am the person who needs to make the decisions for my body. I know my body better than anyone else. 

While I was having symptoms years before I was diagnosed, once I realized there was a problem, RA took over my body quickly.  I started off waking up with stiff fingers not understanding what I had done during the day.  I knew something wasn't right and scheduled an appointment with my family physician.  He gave me a medication and sent me on my way.  Two weeks later I was back in his office.  He was confused as to why I would return so quickly.  "I know my body. Something isn't right."  Knowing my body, I knew something BIG was going on.  We needed to do something different. I will always love myself for knowing my body and for demanding my physician look deeper into my symptoms.  On this second visit, more blood work was taken and an appointment was scheduled with a rheumatologist. (Ha! This was before I even knew what a rheumatologist was).  I had a four month wait to see him.  During that time, it became a challenge to open jars or walk up/down the stairs.  By the time I saw the rheumatologist, I was in desperate need of care.  I can't even imagine if I had waited the two months or so when I was supposed to return for a recheck with my family doctor. 

As I finally got in to see my rheumatologist, a diagnosis of rheumatoid arthritis was quickly made and I began treatment.  At this time I also decided that I wanted a naturopath to become part of my health team. Why?  Because reading about my diagnosis and listening to my own body had already become habit from my experiences with my daughter.  I knew that no matter what the diagnosis, lifestyle changes needed to be made. Despite my rheumatologist telling me diet and other lifestyle issues didn't matter, I had the mantra "You know your body best" in my head.  The changes I made with my naturopath will forever be the best choices I have made on this journey.  Working with her gave me a sense of control over my body that was otherwise not happening. 

In the end, we all know our bodies best.  When we listen, we know when a medication is working and when it isn't.  Our careful ear tells us that we need to make more changes than our doctors are recommending or in some cases, need to slow down a little.  I did this when weaning off prednisone. My body told me we were moving too quickly and I slowed it down a bit.  Knowing your body and listening carefully to it makes becoming an active patient a process that seems natural.  We are the experts on our bodies and when we become active decision makers, we feel more confidence and generally receive better care.   

Monday, September 26, 2016

RABlog Week: The Beginning of Rheumatoid Arthritis for Me

It's the Second Annual RA Blog Week hosted by a Rick from If you haven't signed up, do so quickly.  This is a great way to share your story but also meet others in the community.  If you don't have a blog, no worries. Rick has suggestions of ways to post here.  

Day #1 prompt is to tell your rheumatoid arthritis story. I have been sharing my story here on my blog for eight years, but I think the best summary of my journey is shared here at HealthCentral as part of the Live Now Live Bold campaign.  I hope you will check it out.  If you experienced any similarities, I'd love to hear about them.  

Live Bold Live Now - check out my story here.

Friday, September 23, 2016

There's Always Something Positive to Be Found

As a teacher, one of my goals is to build my student's confidence.  I often ask them to reflect on what is going right in their life.  As someone who naturally needs to find the positive in every situation, I am constantly startled that this is a huge chore for many people.

Earlier this week, I asked students to share one good thing about their weekend on the board as they were coming in. Every student but one had the same response, "Nothing." My response was always the same, "There is always something good to be found."  It soon became a chant by the other students. For many, I had to dig deep into their weekends, but finally, almost everyone had something small to share about their weekend.
  • I spent time with my best friend.
  • I went to a wedding.
  • I participated in a food festival.
  • I sat in the sun.
Although these were very simple things that might happen any weekend, they were each things that should be honored for the positive energy they brought into these students lives. What amazed me was that as the board filled with positives, smiles started popping up.  As students read the comments of their peers, they were happy for each other. The positives of their classmates sparked new positives they hadn't thought about.  It was spectacular.

As I watched the energy in my classroom change, I was reminded of how easy it is with a chronic illness to forget that there are positives in our lives, no matter how small.  Sometimes on very painful days, we have to dig deep to find them, but they are always there.  It also made me think about how I have the ability to change the environment I am in.  While we definitely need to share that we are in pain with our friends and family so that they are aware of what is going on, we also need to be cautious of how our pain is also affecting those around us. By simply sharing something good about our day, we have the ability to take our friends and family out of a serious mood of worrying for us and feel okay sharing something of their own that is going well.  Many times I think our loved ones fear sharing this because it seems our lives are wrapped around pain.  But stopping and just sharing a few nice things about our day is a nice way to connect and live in a similar world outside chronic illness, even if for only a short time.    

Tuesday, September 20, 2016

Essential Oils: Organic Aromas

I have been given this product as part of a product review through Chronic Illness Bloggers network.  Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. 

In my home, I am a stickler about not bringing chemical scents into the house.  They
have always upset my daughter's allergies/eczema and just made breathing in general more difficult. Some people find this a little irritating/picky, but the longer you are without chemicals in your laundry, cleaning supplies, cosmetics, and perfumes, the more aware you are of their negative affects on your body.  When living with an autoimmune disease like rheumatoid arthritis, I feel it is important to eliminate any outside force working against my body that I have the ability to control. Saying that, I do enjoy beautiful scents.  For this reason, I am a huge supporter of essential oils.  Essential oils are a natural way to not only bring beautiful fragrances into your home, but also to use scents that have therapeutic properties.  Lavendar is one I use often when life is crazy and I need to relax. I like it at night too. It's calming properties prepare me for a good night's sleep. When I am sick, I always turn to peppermint or eucalyptus.  A diffuser of one of these two essential oils next to your bed at night makes sleeping much gentler when you have a cold. During the day I use sweet orange or lemon when cleaning. They pep me up a bit. According to Organic Aromas' website, sweet orange has both antidepressant and antiseptic properties. No wonder it is perfect for cleaning days. My diffuser came with an essential oil blend that is very pleasing!
Over the years I have tried several different diffusers. For years I used ones that required a burning candle. Last Christmas I received a water based electric diffuser that until now, I thought was the best.  When I received my Organic Aromas diffuser in the mail, I instantly noticed the differences. First of all, it is simply beautiful. The base is wood (you can have hand-carved bases made) with blown glass that sits on top. Unlike the diffuser I have been using made of plastic that is also lightweight, this one is solid but not heavy. With my clumsy rheumatoid arthritis fingers, I have tipped over my plastic one more than once. The Organic Aromas diffuser is much different. It is made to firmly sit on a counter-top or desk. It even has a little gripper pad on the bottom. And best of all, no water is required. Just add essential oil, plug it in, and it is ready to go. It is stunning at night with its small LED lighting that changes colors. It would definitely be an attractive piece to add to an office, bedroom, bathroom, spa, or in my case, the kitchen.  

As we approach the gift giving season, this would be a very nice present to share with someone special.  If the price scares you off, I want to share something else I really like about Organic Aromas. When I received my first diffuser in the mail via Amazon, it didn't feel like it was misting as it should. I contacted Organic Aromas through email and was pleasantly surprised to receive an email back almost immediately.  The email assured me that they back their product 100%. They asked me to follow a few simple steps so they could figure out what the problem was with my diffuser.  After a few quick emails, it was determined that I needed a new diffuser which was sent out immediately. I have a lot of respect for retailers that work with the customer to satisfaction.  When the new diffuser arrived in the mail, my family and I noticed the difference immediately.  

Wednesday, September 7, 2016

Rethinking Weight Gain

I went to the pool alone a couple times this summer.  It was there that I saw two moms I haven't seen in years. With my kids now grown, I don't go to the pool often. When I saw the women, I saw something exciting.  They had gained weight just like me!   

Okay.  That doesn't sound like a very nice thing to say about other women.  Let me explain. When our kids were younger, we were at the pool almost daily.  Like me, they had lost their baby fat and appeared to be working out regularly. I admired their bodies. They looked really good. Besides their aesthetics, I loved that they were moms who spent time at the pool with their kids. They seemed happy like me.  When I saw them this summer, something important dawned on me. As aging women, we have dealt with a lot. We have raised our beautiful children to adults. We have spent many hours worrying whether or not they would be safe and capable in their lives without us. We have fought with our children and spouses and renewed the relationships over and over.  I am guessing that they are like me and say a silent "thank you" every time they hear the door open late at night allowing them to finally get a good night's sleep knowing their "babies" are finally home.  They may or may not have experienced health issues like me. Perhaps they have lost a parent like me or even shared the sorrow of losing two in-laws in a short amount of time. As women and especially as mothers, we are constantly ready to give our all and because of that, our bodies are constantly in a fight or flight state. As hard as we try to calm our bodies and be good to ourselves, we always have others to think about.  We have also come to a point in our lives that we are starting to put the focus back on our own wants and needs which can be extremely gratifying but also scary and confusing. We are learning who we are again as our children become independent of us.

As I looked at these women, their lives and their bodies, they were absolutely beautiful.  Their bodies weren't a sign of laziness or giving up on themselves.  I knew that from watching them over the years. Their bodies showed me they have loved, been loved, cared, experienced life, and most likely mourned for a lost one or for parts of their life that were no more.  As I saw their beauty, I also saw my own. In the last six years, I have moved away from years of tremendous pain with rheumatoid arthritis and created a new life with the help of biologics. I have raised two teenagers into amazing adults that have given me more love than I ever imagined possible. I have loved the same man for almost 30 years who is also dealing with his own life issues.  I lost my dad who was the one person I could always count on to love me unconditionally.  I felt saddened by the death of my in-laws and have attempted to help my husband through his sorrow. I have had ups and downs as to whether or not the job I love will exist the following year and unfortunately I am still there.  I have helped my two children and husband through their own ups and downs of life.  My life has been enormously wonderful, but not without stress and pain. When I saw myself the through the same eyes I was able to see my neighbors, I instantly felt stunning. Like the stretch marks on my belly that mark the life of my children, our bodies are a reflection of all that is and has been our lives. My body has been through a lot. Why would I expect it to remain as it once was?  It doesn't even make sense. I have been where I needed to be and where I need to be now.  I have matured in so many ways and my body has come along for the ride. We are inseparable. My body is a sign of the journey in which my life has taken.  How can I not see its beauty?

Tuesday, September 6, 2016

Self Care: Vaginal Dryness/SYLK

This is a sponsored post.  I have been compensated through the Chronic Illness Bloggers network.  All opinions remain my own and I was in no way influenced by the company. 

In case the inflammation on our joints isn't enough, chronic diseases like rheumatoid arthritis like to dish out some additional symptoms  One of those is dryness. Often the medications we are taking for our RA or the additional diagnosis of sjogren's syndrome will cause us to experience extreme dryness.  The dryness may be in your eyes, which is a fairly common complaint, but it may also cause vaginal dryness, a less discussed topic. Add perimenopause to the picture and it isn't pretty.  Ah, autoimmune diseases just keep giving.  

As part of the Chronic Illness Bloggers Network, I was asked if I was interested in trying out the product SYLK, for vaginal dryness. Yes, please! This New Zealand product has been around for 30 years and has recently received FDA clearance in the USA.

I wanted to try this product for several reasons. 
  1. I like the ingredients of this product.  My skin has always been very sensitive so I avoid harsh chemicals not only because I know my skin can't handle them, but also because with a chronic illness, I believe we should be as conscious as possible about what we put in and on our bodies. Remember, your skin is an organ too. As always, I avoid products that contain parabens, petroleums, or other chemicals. Years ago I started working towards the idea that if I wouldn't ingest the product, I shouldn't use it on my body. (I am not 100% yet, but it is getting closer all the time.) SYLK is a product that is made primarily from the kiwi vine. I like that. It is water based. (I am happy to ingest both kiwi and water!) The ingredients of SYLK are deionized water, extract of kiwifruit plant vegetable glycerine, sodium citrate, xanthan gum, citric acid, potassium sorbate, and citrus seed extract. Because of the ingredients, SYLK is also safe to use during breastfeeding.. 
  2. I like the philosophy of SYLK.  SYLK states on their website that they use an "ecologically Bio-sustainable process" in the making of their product.  Basically they take the vines of kiwis that are left to rot and extract the good stuff they need. Then they compost the vines.  Awesome!  
  3. I honestly am experiencing vaginal dryness.  TMI?  Too bad! It's true. If not cared for, vaginal dryness can create additional complications such as vaginal itching, soreness, cuts, and painful sex. Personally, I don't have the time or energy to deal with these issues.  Plus, like the rest of my body, I want to feel good down below.  A system that is working properly is always good.  
  4. Issues regarding our private areas are still not talked about often enough and I appreciate SYLK asking us to discuss the connection between chronic illness and vaginal dryness. Sometimes we feel like we are contributing every change in our bodies to our chronic illness and sometimes it really is connected. Vaginal dryness is a real issue for anyone experiencing a chronic illness, even when other symptoms seem under control. For many, sex becomes uncomfortable after symptoms like stiff swollen joints appear. We have to deal with the pain and our insecurities of sex while in pain.  Don't add vaginal dryness to your list of reasons you have to avoid sex. Plus, as we age, the dryness continues.  Learn to care for yourself as soon as symptoms appear.  We don't hesitate to add ointments to our sore joints or dry eyes and we shouldn't ignore vaginal dryness either. 
  5. It's not just for women.  Men can use it too!
Now, how do I like the product? I like it.  It doesn't have a scent which is always a plus for me. When applied, it feels natural enough that you can use it during sex or on days that you feel you need a little more lubrication. I even received individual packets which I think would be awesome to throw in your purse for a dry day.  Don't blush, I keep eye-drops in my purse too. One little warning:  it is runny.  I wasn't expecting that and spilled it all over myself.  But it absorbs quickly and there isn't any stickiness afterwards that some lubricants leave behind.  My suggestion is give it a try.     

*I did check Skin So Deep, a site sponsored by EWG, who rates personal products by safety, but it hasn't shown up there yet. I like to check out products I use regularly and see how they might affect my body and health.