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!