Keep Calm and Stay Home

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These days were all doing the same thing:  shelter in place, self-quarantine, stay at home.  Whatever you choose to call it, we’re home.  All day, every day until this pandemic subsides.  How are you doing at home?

For me sheltering in place is my reality.  When you live with a chronic illness, like spondyloarthritis, there can be stretches of time when I am staying at home.  This is usually when I’m having an arthritis flare…an increase in my usual symptoms of back pain, joint pain, and fatigue.  In these times when I’m home, I’ve learned to stay content for the most part.  If my flare is severe, then I’m in bed, usually sleeping throughout the day.  With a moderate flare, I’m still in bed, but I can enjoy reading books, watching tv, surfing the web.  If I’m having a mild flare, then I can take a short walk around my neighborhood or practice some gentle yoga stretches.

When Governor Murphy put into place a stay at home order for New Jersey, I thought to myself…”I’ve got this!”  I’m used to staying home; how bad can this be?  Here are my strategies for staying sane while staying at home:

Have a purpose:  One thing I think about before I go to bed is what would I like to accomplish the next day.  By having a plan for each day, there is a reason and a purpose for me to get up and get going.  It could be cleaning an area of my house, organizing photographs, organizing important documents or any tasks that I have put off doing. By planning ahead, I have motivation to get out of bed each day.  

Have a regular routine: For me, one of the strategies that helps me cope with this is to have a regular routine.  I try to go to bed at the same time each night and wake up the same time each morning.  Even though, I have nowhere to go, I have a morning routine that includes breakfast, clean up the kitchen, read from my bible or devotional, get showered and dressed, and then work on whatever goal I’ve set for the day. 

Stick to my Yoga practice : I attend yoga classes two days a week at the YMCA.  Now that it is closed, the “Y” has posted my yoga classes on Youtube.  It is really assuring and soothing to hear and see my yoga teacher.  During these times, I had moments where I feel anxious.  I acknowledge the moment, let it pass, and get back to what I was doing.    Practicing yoga and meditation has taught me this concept of acknowledging a thought and then let it go.

It’s Spring!  Get Outside!:    One positive aspect of staying home is the beautiful spring weather we’ve been enjoying.  It’s lovely to go outside in the sunshine, take a walk around my neighborhood, and begin preparing our gardens and planting beds.  Open the windows in your home and let the fresh air in.

I have never had an episode of illness where I was home for three weeks and counting. Even this, is something that I must adjust to with all my experience being home.  I stay connected to my family through phone calls and Facetime.  I have weekly video meetings with my coworkers.  I stay connected to the students I advise and tutor.  Still, it’s not the same as meeting face-to-face.  However, this will have to do for now. 

Stay Healthy!  Stay Safe!

Coronavirus...This Too Shall Pass

The coronavirus.  The current topic that dominates our news cycle.  I have been inundated with emails from many health organizations updating me on the coronavirus (COVID-19).  Multiple emails, several times a day, informing me of the latest recommendations from the Center for Disease Control (CDC) is starting to make me feel anxious. 

Why am I anxious?  Because having spondyloarthritis means I take two immunosuppressant medications to control my overactive immune system.  Since these medications weaken my immune system, this leaves me at a greater risk to contract communicable illnesses.  When I receive my Cimzia injection at the doctor’s office, I need to be in good health in order to receive it.  If I were to receive my medication when I wasn’t feeling well, there is an increased chance of becoming very sick.

 

Being on immunosuppressants, along with this latest outbreak, has made me become more proactive in keeping myself healthy.  I am washing my hands more frequently than usual.  In my church where we receive holy communion, I have decided not to receive for now due to the unknown nature of this virus.  While it makes me sad to not fully participate in the liturgy, I need to be proactive with my health.

If you live with a chronic illness, are you feeling anxious about the coronavirus?  Here are some steps I am taking to stay calm:

• ·      Limit Watching the News:  The news is our source of information about the spread of this virus.  However, the 24/7 nature of our news is feeding my anxiety.  I now turn on the news in the morning and in the evening for a few minutes to see the latest headlines.

• ·   Watch a calming show:  With the stock market tumbling fueled by this outbreak, my husband and I are both anxious.  We started watching When Calls the Heart on Netflix.  It’s a series on the Hallmark Channel.  It’s a quiet, peaceful presence in our chaotic world.  We watched several seasons over the past few days which helped take my mind off the news of the day.

• ·       Stock up on medication:  I receive emails from several health organizations with the latest updates from the CDC.  One tip was to review medications and to keep a supply on hand at home.  I looked through all my meds and discovered there were some that were expired that needed my doctor’s approval to refill.  Those meds are being reviewed and filled.

• ·      Stock up on food and water:  This tip first made me question if I have enough food on hand in case I can’t get out.  However, I have plenty on hand because living near the shore, I am stocked up on emergency supplies in the event of bad weather.

• ·     Pray, exercise, meditate:  These are all good actions to calm fears and live in peace no matter what the storm.

• ·     Communicate:  I have been talking about my fears with my family.  It helps to share my feelings and hear their feedback.  They also have their own concerns about this outbreak.  Being able to share our feelings as a family makes us all feel a little bit better.

• ·    Limit Social Media:  I have been reading the book, Digital Minimalism by Cal Newport.  It’s an interesting read on our dependence on social media and the benefits of taking a break from these digital platforms.  I already started to reduce my use of social media but considering the latest news, I’m really reducing my usage.  Social media has fueled my anxiety regarding COVID-19.  There is a lot of misleading information about COVID-19 on social media.  The World Health Organization (WHO) has termed this misinformation an “infodemic.”  Instead, I’ve been reading books which always makes me feel content.

Yesterday was a delightful, spring-like day.  I went to the small village of Island Heights, NJ.  I sat by the river and read my book.  As a beautiful, warm breeze was blowing, I heard the gentle sounds of wind chimes from a nearby home.  People of all ages were walking the small boardwalk without a care in the world.   It was a wonderful escape from listening to the news.

How are you managing your chronic illness and the news of the COVID-19 outbreak?  I wish you peace, good health, and strength during this time.  As the saying goes, “This too shall pass.”

And to welcome me into 2020…AN ARTHRTIS FLARE!

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I started the new year feeling motivated with some goals set, ready for a new decade to begin with positivity and optimism.  And then I got hit with an arthritis flare.  When the flare initially hit, I managed to stay positive.  However, as the days progress, I feel less and less positive and depression sets in.  This post shares my thoughts and feelings in a flare.

Wednesday:

 I woke up with back and hip pain and felt very groggy.  I had a hard time waking up.  Even after several cups of coffee.  I knew what this was…the dreaded flare.  A flare is when disease activity kicks it up a notch resulting in more pain, swelling, and fatigue.  It’s a feeling of a generalized flu-like, sick feeling.  Time to start taking prednisone.  Although I felt awful, I went to the grocery store to pick up some food.  My husband always offers to pick up prepared food to bring home, but when I’m in a flare, I just want to eat whole foods, no junk.  Fresh fruits and vegetables, lean proteins etc.  I did the shopping I needed to do as quickly as possible just wishing to get home asap.  I stayed home, in bed for the rest of the day.

Thursday: 

Still not feeling any better.  Stayed in bed most of the day.  My mindset was positive.  I watched some of my favorite shows, read my book and a few magazines on my iPad. 

Friday:

 I thought I was feeling better.  I had to get up early and get dressed for my appointment at the rheumatologist’s office for my Cimzia injection.  I drove to the doctor’s office but while I was sitting and waiting to get called in, I started feeling bad…tired, groggy, icky.  I got my injections, stopped for some coffee and then walked around an outdoor mall near the doctor’s office.  I thought it might be nice to get some exercise and window shop but as my time went on, I felt ill and I had a 30-minute drive home ahead of me.  I got home, landed on the couch.  My husband was home and he thought this was the reaction to my injection.  But, no, it was me overdoing it.  I ended up going to bed and staying there for the rest of the day.

Saturday: 

I feel mildly better but still with pain and fatigue.  Now, I’m questioning, “How did this flare even happen?” (As if I’m in control of my body and my immune system.)  I guess I’m now starting to lose my patience with myself.  I was feeling well before this flare began, meaning, I had some pain, but I felt like I was navigating through the days before my flare in a healthy way.  I noticed I wasn’t taking my usual afternoon nap, so I thought I was good.  So how did this flare come about?  Well, then I was reflecting on the few days before my flare.  I remember on Tuesday as I was walking to my mailbox, the driveway was a little damp and I slipped and fell.  When I slip and fall, it’s not so much painful but it feels like a vibration goes throughout my entire body, shaking up my muscles and joints.  So, now I understand why I woke up on Wednesday with a flare. I don’t like it… but I get it.

Still Waiting…

As the days progress, the flare is still with me.  I’m waiting for the steroids to kick in to calm down my immune system.  But I’m still feeling like I have the flu, wanting to stay in bed and not move.  I become progressively sadder and sadder, wondering if I’ll ever feel better.  This is where depression can set in.  It’s difficult to have a positive attitude when I feel worse than usual and there doesn’t seem to be any end in sight.

Fighting my way through the darkness: 

It can be difficult to keep a positive outlook when day after day I feel so ill.  As I expressed to my husband during this flare, it is exhausting to push through each day when you don’t feel well.  Every day feels like a struggle. But then I had a turn around in my attitude.  It was helpful to express my feelings to my husband.  I felt a weight was lifted.

Practicing Self-Care:

• Hot baths!  It is especially comforting and soothing to soak in a hot bathtub with Epsom salts.  It provides momentarily relief from the pain and discomfort.

• Ice cream!  We had unusually warm weather a few weeks ago.  I was craving an ice cream cone.  Soft serve vanilla on a cone with chocolate sprinkles. I bought an ice cream at our local shop and ate it all up happily.  While eating ice cream may not be the healthiest choice, it was something that made me feel happy.

• Books/Magazines!  I am so grateful for my public library.  I enjoy visiting the library to find new books.  But I especially love that when I don’t feel well enough to go to the library, it is always available to me.  I borrow books, magazines, and music through my iPad.    That gives me joy!

On the Mend:

It’s been about 3 weeks and I’m finally feeling like I’m coming out of this flare.  I’m slowly tapering off the steroids, so my flare doesn’t come back.  I also hit a point when I thought I must stop feeling sorry for myself and act.  This past week, I made sure I did some form of activity each day.  I went to my local YMCA two days this week, I walked around the mall one day, and walked around a local park on a lovely, mild day.  Movement helps ease symptoms; however, during a flare, it can make things worse.  I have to go easy with this.

Throughout all of this, as bad as I felt both physically and mentally, I always have hope.  Hope that things will get better.  Hope that a new day brings a new beginning.  Hope that no matter how bad I feel, there is meaning and purpose in everything I do.  And hope is what gives me the courage to manage this disease.

Happy New Year!

Happy New Year! 

As the new year was approaching, I started to hear talk of a new decade.  I didn’t even realize this fact (that a new decade was approaching) being preoccupied with holiday plans.  It made me reflect on the touchpoints of my life in the past decade.  While scrolling social media, I noticed the hashtag, “DecadeinReview” ... I guess I’m not the only one reviewing the past 10 years.

The past 10 years have been a rollercoaster ride of highs and lows for me.  As I reflect, I realize that going through the good times and the bad, I have become stronger and more resilient than I ever thought I could be.

 

Here are my major events of the past decade:

• Both of my daughters graduated college; started their careers
• One daughter was married
• Diagnosed with ankylosing spondylitis in 2012
• Back surgery, microdiscectomy in 2013
• Resigned from my teaching position
• Moved to New Jersey
• Both of my parents deceased
• Worked at a public library
• Taught a college class as an adjunct professor; currently tutoring/advising
• Started a blog about living with a chronic disease
• Advocated my state representatives about arthritis related issues
• Applied and approved for disability
• Became an empty-nester
• Traveled on a Mediterranean cruise
• Started practicing yoga
• Completed 2 rounds of Whole 30

I’m sure there are more highlights than this, but this is what came to mind for me.  I think the most dramatic change for me was my health.  It forced me to give up my career as an elementary teacher, made me realize I can’t even work 20 hours at a library, and changed the way I navigate my life.  But it has been empowering to write about my illness, advocate for arthritis, and connect with others living with chronic illness through social media.

Goals

Instead of making New Year’s resolutions that last half a day, I like to focus on setting goals for the new year.  For me, writing down 3 goals for the new year helps me start the year with a purpose.  I also like setting goals that are specific.  That way they have more meaning for me and something to achieve.  Here are my goals for 2020:

1.  My blog:  I have become a little lazy with writing this blog, especially in the past few months.  The “busyness” of the holiday season has distracted me.  I also felt like I had nothing new to write about.  However, I will continue to post to my blog at least twice a month.

2.  Advocacy:  I have enjoyed advocating for arthritis through Voter Voice.  However, I would like to step things up a bit this year.  I’m thinking about applying to be a patient advocate through the American College of Rheumatology or creating a patient poster for the ACR’s annual conference.  I want to be on the lookout for any advocacy opportunities and push myself out of my comfort zone in the area of advocacy.

3. Crafting: I would like to learn a new craft such as knitting, crocheting, needlework… something peaceful to work on during the evenings.  I also would like to find an art class in sketching or painting.  I took an art class years ago and I really enjoyed the creativity and the serenity of creating art.

What are your goals for 2020?  I hope your new year and new decade brings you many blessings.  Wishing you peace, health, and happiness!

In All Things, Give Thanks

Fall is my favorite season.  I love the cooler temperatures, the variety of  leaves changing color, and decorating my home in all things fall.  One of my favorite decorations is a wooden sign with the saying, “In all things, give thanks.”  I have this sign in my sunroom, so I see it every day.  It is a good reminder to have a grateful heart, despite my ankylosing spondylitis.

You may be thinking “In ALL things, give thanks?”  How can you be thankful when you are dealing with a chronic disease?  I know this may be a tough concept to accept but just hear me out.  There are some positive aspects of my life despite my illness.  Today in church, our priest was talking exactly about this topic.  How can we be thankful despite difficult circumstances in our lives? He continued to say that these circumstances “drive us to have a different kind of life.”  This concept really resonated with me.  I have managed to have a “different kind of life” since my diagnosis and it’s not all bad.  Let me explain.

Healthy Eating

Because of my diagnosis, I am healthier than I was before my illness.  How can that be?  As I began different treatments and saw medicine wasn’t going to fix this, I began looking into healthy eating.  While most doctors I’ve talked to say this can’t be fixed with diet, I researched anti-inflammatory diets to see if it would help.  Through trial and error, I’ve found that I feel my best following a Paleo diet.  A few years ago, I completed a round of Whole 30 and really liked the way I felt by eliminating processed foods.  If I didn’t have this illness, I would not be dedicated to healthy eating.  For this, I give thanks. 

Fitness Goals

A few years after my diagnosis, I went to the Hospital for Special Surgery to meet with a rheumatologist for a second opinion.  She confirmed my diagnosis and agreed with my treatment plan at the time.  She also mentioned that I should try yoga.  I’ve been taking yoga classes ever since.  It was difficult for me at first, but I kept at it.  I really enjoy my yoga classes because I can adapt and modify my practice to meet my needs.  As a result, I feel successful each time I practice yoga. 

I just recently added another fitness class to my schedule.  It is a functional fitness class working on small muscle groups to strengthen my body.  This class is very challenging for me. However, each week I notice I’m getting stronger and can complete more sets of reps.  The class is also a lot of fun with a group of great people and a wonderful instructor.  It’s nice to socialize and get a great workout.

If I didn’t have this illness, I would not make the time to set and achieve fitness goals.  For this, I give thanks.

Interests

The past year, I have been advocating for arthritis through the American College of Rheumatology’s Simple Tasks.  I receive an email from ACR when important legislation about patient rights are being voted on in our government.  From there, I email my state representatives letting them know my position on various medical topics that affect patient care.  I also use Twitter to advocate for arthritis, join Twitter chats, and support those facing chronic illness.

I started this blog in May as this was another goal for me.  I really enjoy the writing process and publishing my blog post.  I’m amazed how many different countries have viewed my blog.  I also love receiving feedback about topics I write about and encouraging others to stay positive despite their illnesses.  If I had not been diagnosed with ankylosing spondylitis, I would have never been an advocate and a voice for the chronic illness community.  For this, I give thanks.

Ankylosing spondylitis has significantly changed my life.  I am unable to work because of it and I live in pain every day.  However, it has given me the opportunity to live a “different kind of life.”  To me, it’s a great life which I am thankful and grateful to live. 

In all things, give thanks.

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When Your Medication Stops Working

I went for my Remicade infusion a few weeks ago.  I was hoping this treatment would improve my back pain and hip pain which was getting worse since my previous infusion.  But, unfortunately, I didn’t feel any better.  It was time for my regular appointment with my rheumatologist, so I talked to her about this.  I thought she would increase the dose of my Remicade and that would be it.  However, she felt Remicade wasn’t working for me and it was time to try something else.  Here we go again, I thought to myself.

“Is that good news or not?”

I mentioned the change in medication to my husband and daughter.  And they both responded the same way to me saying, “Is that good news or not?”  Well, it is good news for me being most Remicade infusions take anywhere form 4-6 hours to complete at the hospital infusion center.  But the bad news is a medication that provided some relief for 2 years no longer works.  In my case there is always a bit of uncertainty in trying a new medication.

The Rundown

You may think I’m being a bit dramatic about all of this.  I have tried a lot of medications to reduce my symptoms.  Of all the medications I’ve tried, only Simponi and Remicade were consistently helpful for about 2 years.  The other medications didn’t work at all or worked for a short time.  When the biologic has no effect on me that means the quality of my life is greatly reduced due to increased pain and extreme fatigue.

 

Here’s the list of medications I have tried over the past 7 years:

Simponi:  Worked for two years

Humira:  Never really worked at all; the autoinjector was painful

Enbrel:  Had an allergic reaction to this one

Stelara:  Felt vibrant during my loading doses and then back to the same old symptoms

Otezla:  I only had to take a pill…not an injection; the side effect of depression caused me to stop

Cosentyx:  Had to stop this one due to change in insurance; it worked well. 

Remicade:  4-6 hours in an infusion chair binge watching Netflix

Buon giorno, Cimzia!

Now, my doctor is having me try Cimzia.  It sounds like a delightful, quaint village somewhere in Italy.  But seriously, starting a new medication is an emotionally exhausting experience.  I have great hope that each new treatment will help.  However, from my past experiences, it turns out to only work for a short while, if at all.  This is where the anxiety comes into play.  None of these medications whether successful or not, has really helped me to regain my vim and vigor lost all those years ago.  That’s another depressing thought, too.

Frustrations

I think what is most frustrating for me is the fact that these medications are very costly and don’t necessarily work.  I get a mild headache, I take ibuprofen and the headache goes away.  I get an infection, take some antibiotics and the infection clears up.  Not so with biologics.  A treatment may or may not work.  To me, that’s the most frustrating part of living with ankylosing spondylitis. You can’t rely on medication to “fix” this condition.  It’s incurable.

Another frustrating part of changing medications is waiting for the medicines to get approved.  This can take weeks before a decision is made.  In the meantime, I am suffering with increased pain waiting for approvals.  One time, I was waiting for my medication to get approved and it seemed like nothing was happening.  I called to follow up with the nurse in my doctor’s office to find out if my medication was approved.  Instead of asking about the status of my medication in a mature and calm voice, I started crying because I felt so bad and nothing was happening in terms of receiving my new medication.  This is not a proud moment for me to share with you, but it demonstrates the desperation patients with chronic illness must endure, aside from their illnesses, in order to feel better.

Step Therapy

Another issue in changing medications is the issue called “Step Therapy” or “Fail First.”  This is where the insurance companies want me to try another, less costly treatment instead of what my doctor recommends.  I have advocated to my NJ politicians to eliminate this practice.  It delays the treatment that I need.  I don’t understand why Step Therapy is allowed.  Those of us with illnesses like ankylosing spondylitis are very sensitive to treatment plans.  What I mean by this is that inflammatory arthritis does not respond to a “one size fits all” medication plan.  What works for other patients with the same condition, may not work for me.  It’s a very individualized treatment plan and I don’t understand why the insurance companies don’t consider these factors when it comes to approving or rejecting medication coverage.

Still waiting…

As I sit here writing this blog, I am still waiting to hear if my medication has been approved.  While I wait, I continue to practice yoga, stay active walking in this beautiful fall weather, and keep busy around my house.  I am keeping a positive mindset that with or without medication, my ankylosing spondylitis won’t bring me down!

My Party Dress

I have a party dress that I’ve worn to a few weddings in the past year.  I love this dress and something magical happens when I wear it.  I feel free and liberated momentarily from my ankylosing spondylitis.  However, in this liberation, there is always a price to be paid.

Matt’s Wedding:

The first time I wore my dress was to my nephew’s wedding in Florida.  This was the first time in a long time that our family was gathered to celebrate a happy event.  From 2012-2015, we watched the decline and passing of our parents which was heartbreaking, exhausting and took a toll on all of us.

The wedding was in Orlando, Fl at the Hilton Bonnet Creek.  It was a lovely resort and convenient to have the ceremony and reception in one location.  We were all enjoying the relaxing venue and the beautiful ceremony.  When it came time for the reception and dancing, a family dance circle came about inspired by the upbeat music.  All family members went into the circle, busting out their best dance moves including me.  It fun, light-hearted and much needed after our difficult times.  I danced the night away as best I could, knowing the next day I would feel the actions of the previous night.  Before bed, I took some medicine knowing how I would feel when I woke up the next day.  And sure enough, the next few days I was feeling the effects of my “dance moves.”  However, the joy and connection I felt with my family that evening was definitely worth the pain and stiffness that developed.

Melissa and Cat’s Wedding:

We just returned from Pittsburgh to celebrate the marriage of Melissa and Cat.  When I received the “Save the Date,” I knew which dress I would be wearing…My Party Dress!  I thought it would be appropriate for this lovely fall wedding.  Once again, the event was magical.  The ceremony and reception took place at the Phipps Conservatory.  There was so much joy and happiness throughout the evening!  Both my daughters were in the wedding party, so it was a great time to see them again, too! 

After the delicious dinner, the dance music started up.  My daughter grabbed me and brought me to the dance floor.  I danced as best I could being that I have ankylosing spondylitis.  I felt pretty stiff when dancing so I’m sure my moves weren’t the greatest. But, I somehow felt transformed to my inner 1980’s party girl!  The evening felt energetic and magical.   The voice of reason..aka…my husband was cautioning me to take it easy knowing I would probably spend the next few days with fatigue and pain.  At the time, all I could think was, “Stop killin’ my vibe!”  However, I knew he was right, but I kept on dancing.  Our daughters are grown, living their own, independent lives. We are so proud of their accomplishments, but we do miss them.   I just wanted to enjoy the moment being with my wonderful daughters. 

My husband was right.  I had a hard time walking to the car after the reception because I felt pain, and stiffness.  And, I felt tired, in pain and stiffness for the next few days.  But, being in pain after this fun event was so worth it to me.  I cherish the times I spend with my family and I gladly endure the pain and fatigue because we’re making memories.  That’s what is most important to me.

My party dress has been cleaned and is hanging in my closet for my next special event.  I’m sure it’s magical powers will lure me into breaking into dance once again and leave me in pain after the event. #noregrets