Wednesday, June 29, 2016

I Found the Person I was Looking For with Biologics

This is a post from 2015 but still holds true today.  My life literally changed almost immediately when I started on a biologic.  I fought hard against them, but in the end, it is exactly what my body needed.

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.

Tuesday, June 28, 2016

Changing Insurance While on a Biologic

Making the decision to go on a biologic was a tough one for me as I shared last week.  But once the decision was made, I have never looked back.  In fact, I have developed a little anxiety over the possibility of ever being without.  This fear unfortunately gets reflected on my husband since
he holds our insurance policy with his employer since I do not have benefits with mine as adjunct faculty. 

The last time my husband changed jobs I was completely off meds which meant I didn't have to worry about transferring meds, pre-approvals or how much insurance would cover for my pricey biologic. When I did start on a biologic in 2010, it was new to me, so whatever happened with insurance seemed right.  As I have talked with others, I now realize our insurance has been very generous with payment of my biologic.  But as my husband started to get the itch for a new employer, but anxiety took hold.  What if they don't pay as much? What if I am not approved? (Another anxiety is changing biologics when this one seems to work so well.)  I wanted my husband to find something that met his needs better, but also selfishly wanted him to just stay put because with the insurance we have now, I know what the deal is. 


Well, he has finally found a new job and it is amazing. During his first week, he has felt more supported and energetic than he has in a long time.  I love getting texts from him throughout the day telling me about another unexpected perk from his new employer. (The last one of the week was that this company buys "real" toilet paper, not the one-ply stuff that burns the butt. It's the little things, right?) This week we will be choosing our insurance and I'll begin the process of having my prescriptions transferred over.  I've talked with my rheumatologist which has made the process a little less scary and I am just trying to focus on the fact that everything else in this job is going so well so far, that the insurance will be great too.  I'll keep you updated but this week, please keep your fingers crossed for me and if you have any great advice for keeping the anxiety low or making the process easier, PLEASE share.   

Wednesday, June 22, 2016

I Fought Using a Biologic For Years

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.    

Saturday, June 18, 2016

Serenity for Anxiety and Stress Relief

I have been given this product as part of a product review through the Chronic 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

I am super picky about what goes on my skin. Not only is our skin our largest organ and needs to be protected and loved, but I have also always had very sensitive skin.  Eczema and dry skin have followed me throughout my life.  Therefore, I look for products with minimum ingredients that are also familiar to me.  Lathering myself in chemicals is just not my thing.  So, when Chronic Bloggers asked if I was interested in trying out The Fay Farm's Serenity lotion, I jumped on it.

First off, The Fay Farm has a beautiful website sharing their story of leaving their day jobs to spend more time with their daughters. I am a sucker for folks who leave their desk jobs for something more. Serenity Lotion, like all The Fay Farm products, is made without parabens, alcohol, mineral oil, or phthalates. They are instead made with  all natural, organically-sourced materials.  This means they are not only good for our skin, but good for the environment too.  Serenity is made with purified water, hemp oil, emulsifying wax, stearic acid, grape seed oil, magnesium, apricot kernel oil, jojoba oil, essential oils, argan oil, 200mg CBD oil, chamomile, green tea, oats, passionflower, skullcap, gluconolactone and sodium benzoate.  The bottle mentions that "We added Cannabidiol Oil to our Serenity Lotion to provide improved relief for anxiety and nerve pain."

After years of using natural products for cleaning our house, laundry, and on my body, I have become very sensitive to scented products.  When you have been away from these products for a while, your nose quickly learns that they are a danger to your body.  I am always cautious when using a new product because of this.  I even shy away from some public restroom hand soaps because after numerous washes, the scent still bothers me. When Serenity Lotion arrived, I pumped a small dab on my palm. While I had already read the ingredients, I always like to play it safe.  Wow!  The scent is very natural yet calming.  Since this product is intended for the relief of anxiety and stress and the calming of nerves, it is suggested that before using this you consider your individual stress level.  Then, use this lotion on your neck, covering the lymph glands.  Move down to your abdomen and give it a pump of Serenity.  Finally, massage it on the bottoms of your feet. Within five minutes you should feel more relaxed. Several days a week I work in the morning and then head back out for another class.  Around 5PM, my body is ready to shut down, not get back in the car for an evening class. What I have been doing is going through this ritual of massaging Serenity on my legs, especially my calves and feet before leaving.  I am guessing it is the essential oils that are providing the quick relief.  When I get home at night, I feel drawn to it again. My feet and neck are especially happy to be treated.

Since I am someone who uses natural products on a regular basis, I wanted to make sure Serenity Lotion was liked by others.  Whenever we've had visitors in the house I start off with "I am not selling this product, so don't panic."  But I wanted to see their reactions.  One friend is also sensitive to scents and right away noticed the gentleness of Serenity's scent.  Everyone mentioned how soft their hands instantly felt.  This lotion is definitely a winner.  It would make a great gift also.

Ready to give it a try?  Use the code CATEEPOO when shopping online at The Fay Farm http://thefayfarm.com/ to receive 10% off and free shipping within the US.  They have many tempting products.




Wednesday, June 15, 2016

The Waste that Comes with Rheumatoid Arthritis

Let me just start by saying that I am not always the best about being environmentally conscious.  I drive a car built for seven people when generally it is just me in the car, I eat out which creates tons of waste, and I don't recycle everything that I know is recyclable. (The last one is due to my border collie who attacks the recycling container so I have to be cautious about things that can hurt her.) But, the environment and the waste that I contribute to it is definitely something I keep in mind. We keep our house cool in the winter, I open windows whenever I can, I'm constantly turning off lights in the house, I either bring my own grocery bags or go without, every spring I am growing plants around my house, etc. It is something I think is important and something I am always striving to be better at. So, how does rheumatoid arthritis fit into my goals of being environmentally conscious?

It started several months back when I received notice from my insurance that I could no longer get refills on my prescriptions at our local pharmacy.  To be honest, I was happy about this because I don't love our neighborhood chain pharmacy.  I was excited that I would no longer have to worry about picking up my prescription either, it would come via UPS. What I didn't realize is that by receiving prescriptions in the mail, I would be contributing to a whole lot of waste.

First, the prescriptions are over-nighted.which means tons of resources are being used just for me.

Here is the size of my prescription:


The prescription does have to remain cool which explains the reason for so much, but let's continue to what I have experienced the last few months and will be doing again this week.

A regular brown corrugated box arrived.  It is quite large for the prescription above, right?


Once I opened the two boxes, I found this very nice Styrofoam container.


Next, I found my prescription wrapped in bubble wrap and 2-3 ice packs plus many sheets of paper.



Let me just say that I was horrified when I received the first package and then by the time the second arrived, I felt sick to my stomach. Included is one other small bottle tightly wrapped. For the time being,I will be contributing to this waste every single month. Aahhhh!!!  Does anyone else feel guilty? What do you do with all of these materials? Please share ways you reuse, not just recycle. 

Saturday, June 11, 2016

Happy 28th Anniversary

28 years ago today, at the very young age of 20, I said "I do" to my best friend.  While we both work hard at our relationship, it has never seemed especially hard.  Together, we have grown up, encouraged each other, and learned from each other.  We had eight years together before starting our family and as things start to come full circle, we find our children gone most of the time and things centered back to just the two of us. Sometimes it is sad because our kids are so much of our lives, but at other times, it is really fun to focus back on just the two of us.  Feeling very lucky today!

Wednesday, June 8, 2016

Live Your Life Outside Your Blog: Reflection

When I attended HealtheVoices16 in late April, I had some anxiety. I knew that many of the attendees were "giants" in the world of health advocacy . I wondered what I had to contribute. When I attended Trevis Gleason's workshop on "Advocacy Offline" and he spoke on the importance of sharing our disease outside our blogs and community, I felt challenged.  I looked around and sat in awe at all the wonderful things my community leaders were doing to advocate for their disease. I needed to do more.

When I got home I got busy and asked for help from some of my community friends. 

Molly was my first guest and wrote about how blogging and using social media allows her family to know what is happening with her body while also creating online conversations with others. She also talked about joining communities and summits.  
  • My take-away: I am definitely no Molly when it comes to social media, she is AMAZING, but I do my little part in sharing with others. I had hoped I would feel more comfortable sharing more RA related topics on my personal Facebook account, but I have decided that I like having a little place in my life carved out for things that are focused more on my family and the happiness I gain from them rather than on RA. I have a blogger page to share RA information. I have definitely tried to improve my voice in the community since reading Molly's advice and I am glad I have. I enjoy this and feel empowered by others.  
Angela shared how she has slowly been sharing her rheumatoid arthritis outside her blog and community by adding RA related hashtags to photos of everyday activities she participates in such as 30daysofbiking in April.
  • My take-away: I think I can do this pretty easily. If I am posting a picture on Facebook of my family and feel it somehow relates to RA or Chronic Illness, I can use a hashtag to represent that. I'm also trying to use Twitter more, even if I am a bit Twitter challenged, where these hashtags seem more natural.
Sallie has become part of the community by reading blogs and like Molly, joining health communities. Sallie joined a campaign at work where she was able to share her disease while also helping other organizations set up similar campaigns. 
  • My take-away: One of Sallie's colleagues posted on Facebook that she wasn't aware of the difficulty Sallie experiences but after a difficult pregnancy, she has more understanding for Sallie. This left a huge impression on me. By sharing my disease, I am not only helping others learn about my disease, but I am helping others to have more empathy towards EVERYONE that surrounds them. We each have challenging lives with stress, anxiety, illness, financial and relationship issues. By sharing that I am having a tough day, perhaps I am opening up someone's eyes to the fact that just because a person may look fine and is smiling, it doesn't mean everything is hunky dory.    
Lene, being in a wheelchair, is naturally sharing her disease outside of her blog all the time just by living life. What I really liked is when she said, "Kids will freely ask me questions and once the questions have been answered, move on to other things."
  • My take-away: When I am having a flare and it is obvious something is going on, I am going to make a conscious effort to use a more kid-like mentality that if I share, people will move on. (I don't like a lot of attention when I am in pain.) But as Lene said, "I believe that we are taught to avoid the unusual, such as people with a disability." I have definitely noticed this when I have had a serious limp, people want to look away, yet they can't. Maybe by breaking the ice and sharing what is going on with me rather than letting people just wonder, I can open the lines of communication about disability. 
Overall, this last month of reflecting on how I can better share my disease outside my blog has been powerful.  I have had to really look closely at who I am, what I am comfortable sharing and doing, and what makes the most sense for me. At HealtheVoices16, I felt anxiety the first night sitting in my hotel. But as I met new friends with various illnesses, I realized that in my own quiet way, I am making a difference. I felt I belonged. My way might not be as powerful as others or reach the same numbers of people, but that really isn't who I am. It was when I bought an RA t-shirt this month thinking it would be an easy way to share my disease outside my blog that I realized I am trying too hard. Wearing an RA t-shirt isn't me. I have to live my disease the way I live my life, quietly and on terms that make me feel 100% comfortable. How and when I share will be on ongoing decision I make at the time. 

Disclaimer: While all thoughts and opinions are my own, my travel expenses were paid for by Janssen. 



Tuesday, May 31, 2016

Live Your Life Outside Your Blog: Guest Post by Lene Andersen

Live Your Life Outside Your Blog: Guest Post
by Lene Andersend



Photo thanks to David Govoni
There are some distinct benefits to your juvenile arthritis causing you to use a power wheelchair since your teens. For one, no one doubts that I have a chronic illness.

The first symptoms of juvenile idiopathic arthritis (or, as it was known in the old days, juvenile rheumatoid arthritis) arrived when I was four years old. It took another five years to get a diagnosis.
Initially, the JIA settled in only in two joints, but when puberty hit, so did the disease. And hard. Fast-forward through a bad systemic flare that almost killed me, fused hips, two years spent lying in a hospital bed waiting for hip replacements, and finally getting those hip replacements at sixteen. They enabled me to sit up and use a power wheelchair and I went home to live a pretty normal life. This involved going to school, moving to Canada (I am originally from Denmark), a couple of university degrees, some work, love, loss, friends, and fun. In other words: life.

But it is a life lived from a wheelchair with very visible signs of RA on my body and it has some interesting challenges. There are the looks and questions from the people I meet, and then there are accessibility issues.
Looks and questions are easier to deal with. Canadians are usually extremely polite and aware that you shouldn’t ask too many personal questions. If they do, it’s almost always prefaced by “I hope you don’t mind me asking ...”

Photo thanks to David Govoni
And I don’t. Mind, that is. I actually prefer it to the sideways glances (or outright stares). I believe that we are taught to avoid the unusual, such as people with a disability. Kids will freely ask me questions and once the questions have been answered, move on to other things. It’s the parents who drive me crazy — they rush over, hush their children, and apologize profusely. That only teaches stigma.

Accessibility is another kettle of fish altogether. Here, I usually get a little ranty (in a polite Canadian way, naturally) and start citing the laws that protect the rights of people with disabilities to participate on an equal basis. I try not to direct my ire at individuals, but write letters to corporations suggesting that they are missing out on a large number of customers (for instance). I might also blog about it. It can be a very effective form of advocacy, especially when coupled with an offer to meet and show them the reality of the lack of access.

Cathy asked me to write about how I share my RA outside of the online community, without it taking over my life. Out there in the real world I do tend to focus on just plain living my life. Spending time with friends, doing my banking and grocery shopping, photographing my city volunteering, taking walks with my beloved, and all the other things that make up a life.

Looking a bit deeper in these everyday pursuits reveals that they, too, can be advocacy. There are a lot of preconceived ideas about the dependence and inability of people who have disabilities. Participating in my community can challenge those stereotypes. The simple act of buying my own groceries or holding hands with my partner can make people think beyond what they think someone in a wheelchair can or should do. It usually results in some surprised, even astounded, looks. Some days I mind, other days it makes me laugh, knowing that I just blew someone’s mind simply by living my life.



Friday, May 27, 2016

Perimenopuse and Chronic Illness

For many of us, our diagnosis came way too soon. Before our time we felt old, worn out, and tied to medications. Our bodies experienced changes due to our disease that we weren’t emotionally ready to handle. And just when we feel our bodies have experienced the worst, along comes perimenopause. According to Dr. Christine Northrup, perimenopause is the five to ten years leading up to menopause. For some women, it may even last 13 years.  (Please, no!!!) For me, perimenipausal symptoms started at around 45 years old with a few hot flashes in the morning. Three years later, I’m adding to the list of never-ending symptoms. 

To read more, check out my post at ChronicSex.org.

Wednesday, May 25, 2016

Live Your Life Outside Your Blog: Guest Sallie Ferguson

Note from Cathy: Sallie is a wonderful friend I met through our work together for a non-profit organization. Although we live on different continents, I learn so much from Sallie and value her friendship. Sometimes I feel like she has packed me up in her suitcase and is giving me a "holiday" experience as she travels through Europe and shares her adventures on Facebook. I learn through these photos to stop and make memories. I also love that she doesn't hesitate to post photos of her swollen feet for the world to see. She is definitely an example if living outside your blog/community.       


Guest Blog – “This is Me”, Live TV and Rock Choir.
Sallie Ferguson

I am a 54 year old Woman with 2 beautiful grown up Daughters and 4 wonderful Grandchildren.  I live in just about the centre of England in Northamptonshire and have been living in the same house for 36 years, since I married my Husband, Fred.   For those of you quick at maths, you will realise that I was married at 18 and just in case you are wondering, my Daughters came along in the first 2 years. 

I have had a varied and fairly successful career; the last 10 years having been spent in Banking. 
So, why you may ask, am I writing a blog about Arthritis?  Let’s back pedal to 4 years ago, I can distinctly remember the strange swellings on firstly my right wrist and pain.  This was followed within weeks by pain in my left risk and more swelling.  “Repetitive strain” I thought and made a mental note to use the iPAD less and take more breaks away from my Computer.  At the time my Mum was very unwell and the symptoms didn’t feel a priority.  Admittedly, travelling for work and attempting to lift a suitcase in to the overhead locker did move the problem up the agenda a little.  It wasn’t however, until my feet became so swollen with the added sensation of walking on broken glass that I decided that I could no longer ignore the symptoms and took the first appointment to see a Nurse at our local surgery.

The Nurse very wisely instructed me to get on top of the pain with Paracetamol and suggested that in her view, I was demonstrating a form of Arthritis that needed blood tests to confirm.  Within a few weeks, by which time Mum had sadly passed away, I was handed the diagnosis of Rheumatoid Arthritis and sent away to research both the Disease and the DMARDs I was told were needed to get on top of the chronic inflammation.

During this time of learning and adjusting I read various blogs and made connections with organisations that I believed could help me and some that I believed I could help.  I have had the pleasure of working with Cathy Kramer (The Life and Adventures of Cateepoo), Lene Andersen (The Seated View) and Jessica Murphy with a common aim to make a difference to a few of the lives of those diagnosed with Inflammatory Arthritis.

My Disease is largely non-visible (on a good day) and I have chosen to capitalise on this fact in a Campaign at work called “This is Me”.  The Campaign is targeted at awareness for non-visible disabilities including, mental health, hearing loss, mobility and many more disabilities.  The message is simple “Don’t judge a book by its cover”.   You don’t know what I am fighting today.  Is my fatigue off the scale, are my fingers working, can I string a sentence together (the brain fog can be a real killer) or am I at my best?  My video and that of many other Colleagues has been shared across our organisation and has helped other organisations to set up similar campaigns.  The Campaign also led to me talking live on National Television during an Annual Conservative Party Conference!

Distraction is a wonderful technique.  I wish I was better at Meditation or better at practising Meditation but so far, I haven’t mastered the technique.  So, what do I do for distraction?  I sing?  Not very good, but I sing – I am an alto in a Rock Choir (I will leave you to look the organisation up and if you are based in the UK, why not sign up).  I join a group of Women and Men every week to sing our hearts out – covering the likes of Don’t stop me now, Living on a Prayer, Something inside so strong, Budapest and many more – I LOVE IT!  Highlights so far have been singing at Wembley Stadium to 85k people and had the great honour of backing Russell Watson when he performed at a local Theatre.

I can honestly say that the pain melts away while I sing.  My Disease doesn’t define me but it has certainly brought opportunity and challenges in to my life and I am loving every moment.