And to welcome me into 2020…AN ARTHRTIS FLARE!

https://twitter.com/CreakyJoints/status/1223094589315260416?s=20

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.

https://bustedhalo.com/jolts

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

My Decision to Apply for Disability Benefits

How do you decide to apply for social security disability (SSD) benefits?  What is the moment or experience that makes you begin the overwhelming process of collecting all your medical files including office visits, blood tests, imaging tests etc.?  It is a significant decision to apply for benefits and it’s not an easy one to make.

Say What?

When I was diagnosed with ankylosing spondylitis, my father suggested that I apply for SSD benefits.  I thought he was a little crazy.  I envisioned those who legitimately needed these benefits as homebound, unable to care for themselves.  As my disease progressed, I started researching how to apply for benefits.  I was also reading message boards on the Spondylitis Association of America website about applying for benefits.  What I learned from my research is applying for benefits is not easy.  In the process of applying for social security disability benefits, there is an involved application, the decision, phase, the denial and appeal phase, usually requiring the assistance of a lawyer. From what I learned, to actually be approved for benefits can take many, many years. It sounded overwhelming to me.  I still had in my mind that I wasn’t ill enough to apply.

Career Change

I was working as an elementary school teacher when I was diagnosed.  In that time, my husband was transferred with his job out of state.  I thought I would like to work part time when we moved to make life a little easier for myself as I managed my disease.  My goal was to work as a substitute teacher or as an adjunct professor at a community college.  Well, the substitute teacher position only lasted one day.  I was standing on my feet all day and by the time I got home, I was in a lot of pain.  I had to cross that idea off the list. After that experience, I was hired as a temporary library assistant at the county library part time.  Eventually, I got a permanent position.  I worked at the reference desk helping library patrons.  In this job, I was able to sit mostly throughout my 8-hour shift and I thought it would be a good fit considering my condition.  However, sitting for an extended period can be just as bad as standing.  My health was deteriorating, I was in a lot of pain, and working 20 hours a week was growing more difficult for me.

My Denial

As my husband observed all of this going on, he suggested that I apply for benefits.  I knew he was right, but I just couldn’t do it.  I couldn’t do it because it would mean that I have to acknowledge  that there was something wrong with me, and it interfered with my ability to work.  I was in denial and wasn’t ready to admit that I was disabled. This was one of the first challenges I experienced with my chronic disease.   I don’t want to accept that there is anything wrong with me.  I don’t want to accept that sometimes I walk with a limp.  I don’t want to accept that despite the various medications that I take, my disease is slowly progressing.  It’s a mind game that really messes with your spirit. In addition, there is the stigma of being disabled.

The Stigma

Let’s talk about this stigma.  What do you think when a seemingly able bodied person tells you that they are disabled?  The first thing that comes to mind is the person isn’t really disabled at all and just ripping off the government.  Since I have an invisible illness, will family and friends look at me with that lens?  Am I “less than” as a wife, mother, sister, friend because of my limitations? Can I live a full life even as a disabled person?  These are the thoughts that were going through my mind as my husband suggested that I apply for SSD benefits.  And, I just couldn’t do it.

Time to Apply

In October of 2016, I sat down at my computer and began the long process of applying for social security disability benefits.  I had the realization that because of my AS, I was no longer working full time in the profession that I love, which resulted in no longer being able to provide medical benefits for my family.  I was unable to work 20 hours a week.  And the treatment plan I was on was not effective.  So that was my moment when I recognized that I was disabled, and I decided to take the arduous journey into the application process.  The process had its ups and downs.  I was contacted a few times by social security with either questions or asking me to follow up with my doctors who had not responded to their inquiry. From all my research into the process of applying, I knew this would be a long wait, so I didn’t get my hopes up at all about being approved.

The Decision

Six months after applying for benefits, I learned that I was approved!  I was so shocked at this news.  From reading the experiences of other ASers on the SAA message board, this process can take years, involve lawyers, appeals and court dates, and some still don’t get approved.  I cried, and immediately thanked and praised God for this incredible blessing.

Sense of Self

Throughout the application process I worked as an adjunct professor at a community college teaching a college success course.  I was proud that I achieved this goal after leaving full time teaching!  Now, I work a few hours a week as a tutor at that same college.  I continue this work because it makes me feel valuable and gives me a sense of purpose as a teacher and as an individual.  And, with this self-worth, I can accept that I am disabled.

I'm Fine

I watched a short video the other day sponsored by Eli Lilly and the National Rheumatoid Arthritis Society called, Behind the Smile.  It shows Jane, a working mom, managing through her day while living with arthritis.  As Jane encounters each person in the course of her day, they ask how she feels and she replies, “I’m fine.” However, in the video, you see behind the “I’m Fine” and understand the struggles in each part of her day.  I really related to this video, especially today.  I’ve been having struggles both physically and mentally with my AS lately.  It’s really starting to get me down.

Recently, I’ve been pushing through activities and saying, I’m fine, when I’m not.  Then, when I get home, thrilled to rest, I have a bit of an emotional breakdown.  It takes a lot of emotional energy to push through activities when you don’t feel well.  It’s exhausting to keep a brave smile on my face when all I want to do is get to the comfort of my home as fast as I can.  So, pushing through activities when I really shouldn’t be is the source of my sadness and distress.

I was talking with my husband about all of this.  We had gone out for dinner with friends after I had a busy day.  About half-way through our meal, I really started to feel bad.  I was tired, my back and hips were hurting, and my neck felt very painful, too.  But I just sat there, trying to be as engaged as I could, looking forward to getting home, taking some meds and going to bed.  If you’ve ever seen the gif with Amy Poehler from Parks and Recreation smiling but the caption reads, “Everything hurts and I’m dying,”…that was me. We went home, I went straight to bed with a heating pad and some Tylenol.  I felt so miserable that I couldn’t even talk to my husband.  That’s when he truly gets worried about me. 

A few days later, I continued to share with him how bad I felt at dinner with our friends.  He said I should have let him know I wasn’t feeling well and we could have left.  This is where is gets difficult for me.  I don’t want to be the party pooper but at the same time I need to take care of myself.  I realized from our conversation that I really need to get better at communicating my needs.  True friends will understand this about me.

Some days are more difficult than others living with AS.  I don’t feel like doing activities sometimes.  I have to ask myself when I want to do something but then decide not to, “Is this AS or am I depressed?”  Most times, the answer is AS.  I realize I’d like to have a fun day shopping.  What stops me from going is knowing the amount of effort it takes to walk around the mall, try on clothes, walk back to my car, and then drive home exhausted.  Recently, I’ve read there is a link between AS and depression.  That makes a lot of sense.  You’re diagnosed with a disease you never heard of, your life changes drastically from the way you were previously living, you try lots of different medications in hopes of returning to your former self, and you are living with various degrees of pain and stiffness every day.  It is understandable how there is a link between depression and  AS.  If I ever answer my question with, “I’m depressed.”  I know to make an appointment with my doctor to get things checked out.

While I look on the bright side of most things and my intent of this blog was to have a positive tone about managing life with a chronic illness, I also feel compelled to tell you some of the not so nice details of AS.  This week, I’ll be going for my Remicade infusion.  I hope and pray that this will be what I need to get over the hump from my recent flare and make me feel a little bit better.