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. 

In the Likely Event of a Flare

For the past five days, I’ve been fighting an arthritis flare.  Yesterday, I realized I wasn’t winning the fight, so I had to submit to meds and rest.  An arthritis flare is a dramatic increase in the symptoms of ankylosing spondylitis.  It’s like my immune system goes wild and so does the increase in pain, swelling, and fatigue. Everything hurts so much more, and it affects most of my body.  My left foot is throbbing, my knees are burning, I have pain in both hips, my hands hurt, I have pain and stiffness throughout my body when I move, and I am very, very tired.  I have been in bed most of the day today.  I forced myself out of bed to shower which felt good, temporarily, as showering is also exhausting.  So, what do I do when I have a flare?  I practice self-care.  Here are some things I do:

Medications:  My medications for a flare are always close by.  These include steroids and muscle relaxants.  The steroids help to calm down my immune system, but this can take several days to kick in.  The muscle relaxants help in pain relief.  (This is how my doctor prescribes treatment for flares.  Please speak with your doctor to find out the best way to treat your arthritis flares.)  Lately, in place of muscle relaxants, I’ve tried hemp extract.  I prefer hemp extract because it takes away the pain while feeling less groggy than my prescription medications.  There are a lot of opinions in the chronic disease community about using CBD.  I would recommend talking to your doctor and finding a reputable health food store that can guide you in selecting a CBD product.

Comfort Foods:  My number one comfort food is homemade chicken soup.  There is something about chicken soup that’s a source of healing for me.  I load it up with plenty of vegetables including zucchini noodles.  All the nutrients in the soup make me feel like I’m doing something healthy for myself when I don’t feel well.  As miserable as I felt today, I managed to throw a bunch of chicken, veggies and broth into my crockpot.  I took a nap and when I woke up, the soup was done; ready for me to enjoy.  I also love tea. Brewing a cup of tea is a cup of comfort for me.  It just makes me feel better.  I enjoy black, green and herbal teas. Sometimes I have GI symptoms with a flare such as nausea and gas.  I especially enjoy peppermint tea when I have these symptoms because it’s a natural way to calm down my GI symptoms.  (Shout out to  my daughter, a physician assistant in GI, for that tip!)

Books: I enjoy reading books.  When I feel particularly ill, I really like reading books by Debbie Macomber.  She writes amusing, romantic novels that are light-hearted and easy-to-read.  Her books always put me in a better mood when I don’t feel well.  She also wrote a non-fiction book that really picked me up when I was feeling down, called Knit Together: Discover God’s Plan for your Life.  Another book I recommend is written by Ann Romney called, In This Together:  My Story.  This book is about her diagnosis of MS and how she sought out alternative therapies to help regain her mobility.  This book encouraged me to open the possibilities of alternative treatment for my AS. If you want a good laugh, I really enjoyed, I Must Say by Martin Short.  This was a funny and poignant autobiography.  It will make you laugh, cry, and feel like Martin Short is your new best friend.  You must listen to the audiobook version of this book because Martin narrates this book with all his impressions and characters.  It was a joy to listen to this wonderful book. 

Netflix:  I am a big fan of the show Blue Bloods.  There is something about the New York City setting that I love…not to mention Tom Selleck is pretty easy on the eyes!  I also like Donnie Wahlberg on the show…he’s a badass!   Another show that I like is The Great British Baking Show.  I really enjoy watching all the intricate baking.  It’s amazing to see how these home bakers create such masterpieces each week in a limited amount of time.  I also like how the contestants are so supportive of each other.  You see the best in humanity while watching this show.

Well, folks, that’s how I’m managing through my flare this week.  I hope I will start feeling like myself again soon. For now, it’s time for another nap! 

Peaceful Warrior

Peaceful warrior is my favorite yoga pose.  I like the idea of being a warrior, in combat, always ready and willing to slay my ankylosing spondylitis.  But, it’s the peaceful part of this term that speaks to me more.  It’s the idea of being strong in battle with a peacefulness or serenity during the battle.  Gaia.com interprets peaceful warrior or reverse warrior as “showing up with love and intention in day-to-day life…When practicing reverse warrior, ask yourself to consider definitions or beliefs in your life from another perspective. There are two sides to each coin, and the better you know both sides, the better prepared you will be to live your life with steadiness, grace, and ease.” (https://www.gaia.com/article/viparita-virabhadrasana-reverse-warrior-pose)  That’s how I want to live my life with “steadiness, grace, and ease.”

I started practicing yoga about 3 years ago.  I had two doctors suggest I try it to help with spondylitis.  I signed up for Gentle Yoga at my local YMCA.  The first day of yoga class was discouraging to me.  Through all the sitting and standing moves, I was stiff, in pain, and had zero flexibility.  I also had a hard time with balance.  I really wanted to cry after my first class.  My yoga teacher asked me how I liked my first class and I mentioned to her my difficulties.  She immediately gave me tips to modify my yoga practice.  I used those tips at the next class and I didn’t feel quite so clunky.  That’s how I got hooked into yoga.  I can use supports such as a bolster, yoga strap and yoga block to help me feel successful in my yoga practice.  As the week’s progressed, I noticed a slight improvement in my flexibility and balance.  Eventually, I didn’t need to hold on to a chair for some of the balance positions. 

What I love most about yoga is that it’s an individual practice.  Other students in my class can do more positions than I can.  And, my practice can differ from class to class.  Some days my balance is great and other days, I need the support of yoga block or standing near a wall to support me.  But, that’s okay.  It’s adapting and adjusting to my body’s unique needs and still being beneficial to my overall health.

Practicing yoga makes me feel successful.  That’s a big statement coming from someone who has a chronic illness.  With ongoing pain and stiffness, it’s hard to find an activity that I can feel successful in.  Yoga is a practice of the mind, body, and spirit.  Therein lies my success.  Here’s how it helps me:

Mind:  There are so many thoughts and ideas going through my head, especially during the final relaxation portion of my yoga class.  But, my teacher says these thoughts are okay, just don’t hold on to them.  So, I try to let go of the thoughts that go through my head and focus on the peace.  I remind myself this time is for me and I shouldn’t waste it thinking of other things.  There is a lovely peacefulness that I feel when I let go of ideas and just be.  It’s not always easy to achieve but when I do, it feels great.  This mindfulness comes into practice especially when I have a day that I am in more pain than usual.  I have learned through the years to stop the activities I’m doing, and to just rest.  When I do this, I feel better.  When I attempt to push through the pain, stiffness, and fatigue, I end up worse off.  I have learned to physically rest and quiet my mind when I don’t feel well.

Body:  Yoga has helped so much with my balance.  I was having some falls that were alarming to me being I was in my early 50’s.  Over the years since practicing yoga, I have felt stronger in my balance and haven’t had any trips or falls in recent years.  In certain yoga positions, my yoga teacher reminds the class that a certain position results in stretching and strengthening the spine to create space within the disks.  Anytime she says this, I envision my spinal column creating space.  With my condition, the sacrum and hips can become very stiff.  I know through my yoga practice, I’m doing everything I can to keep these joints moving.

Spirit:  I’m not talking about religion here.  I think this portion of the mind/body/spirit connection may mean different things to different people.  For me, “spirit” defines who I am.  It’s the spark, personality, and joyfulness I feel inside of me. It’s the mother in me who’ll always be a mom, the teacher in me who comes up with new ideas, it’s the prayerful person who seeks being closer to God, and the peaceful warrior managing ankylosing spondylitis and all parts of her life with “steadiness, grace, and ease.”  Namaste.

Adapt and Adjust

Recently, at the end of my yoga class, my teacher imparted some words of wisdom.  She talked about how one of her master teachers would always say to “adapt and adjust” your yoga practice. That spoke to me so much that I quickly took out my phone and added these words of wisdom into my notes.   I physically can’t do all the positions my yoga teacher demonstrates but I do adapt and adjust my practice to how my body feels.  That’s what yoga is all about…it’s an individualized practice attuned to your body’s needs.  Adapting and adjusting is great life advice, yoga advice and living with a chronic disease advice.  Living with spondyloarthritis, I’ve had to learn to adapt and adjust to my new “normal.”  When I fight this idea, life can be difficult by mourning my old self and all the activities I was able to do. But, when I “adapt and adjust” to my present circumstances, I live a more peaceful life.

This isn’t my first time adapting and adjusting to my environment.  My life as a classroom teacher showed me I needed to adapt and adjust to the needs of my classroom.  I started off the day with well-planned lessons, timed perfectly, materials ready to go.  But, life throws you a curve ball and all those well-intentioned plans go out the window.  A student vomits in class, the fire alarm goes off for a fire drill, two students get into a disagreement that requires my mediation, drinks spill during snack time, and then there’s a pop-in observation from my principal.  All these scenarios required me to adapt and adjust my daily plan. I carry this idea with me when presented with physical limitations caused by my AS.  As a first-grade teacher, I would modify activities based on student’s abilities.  I had several students who were classified as learning disabled and other students in the process of being classified as learning disabled.  I would look at assignments to see how I could break down an activity, so my students would be successful.  It could be highlighting key words or breaking down an assignment into multiple steps.  By creating modifications, my students were successful completing a task with a sense of accomplishment and self-confidence.

Now that I live with arthritis, I need to make modifications in my daily life to make it easier for me.  If I am cleaning the house, I take short breaks in between tasks so I don’t get exhausted.  I don’t clean the whole house in one day like I used to; I complete a few small tasks each day.  I can’t cook overly complicated meals anymore because I get tired in the process.  Now, I cook more simple meals that I can enjoy.  I also like using the crock pot.  When I’m parking my car in a parking lot, if I can, I’ll pull forward to the open space in front of me, so when I leave I can pull forward out of the space. Backing out of a parking space requires turning the upper portion of your body which can be painful to my neck and shoulders.  These small little “hacks” make life simpler for me and I feel successful despite my limitations.  What’s funny is, these modifications don’t feel like modifications at all.  It’s just how I operate.

In my next post, I’ll discuss my love of yoga, and how it helps me in all aspects of my life. Stay tuned!

Vacation!

My husband and I have just returned from a trip to Aruba.  You would think, “Hey, that’s great!  Sounds wonderful!”  But living with a chronic illness, travel can be tedious.  I was feeling a little bit anxious about traveling while at the same time I kept thinking, “This is vacation.  This is supposed to be fun!”  Living with a chronic illness, you learn more about yourself than you did before you were sick.  I’ve learned to ask myself the question, “Why do I feel anxious about traveling to an awesome vacation?”  The answer came quite clear to me.  Because, living with AS can be exhausting in the day-to-day tasks in life.  For example, some days I need to rest after taking a shower. So, thinking about traveling can be overwhelming to me.  That makes sense.  Asking myself these types of questions helps me to process and understand my feelings.  I’d like to share with you what was troubling me about travel.

Packing:  Packing is harder for me these days because I like to pack items in case I get a flare, like a heating pad, my favorite teas, puzzle books and reading materials.  Then, there’s my medications.  Sometimes it feels like I need a separate piece of luggage just for my medications.  I don’t take too many meds daily. But, I need to pack a lot of different medications in case I get a flare while away from home. 

The Obstacle Course:  I feel like traveling through airports these days is an obstacle course.  We take the car to the off-site parking lot, take the shuttle to the terminal, check in, check our luggage, go through security, and finally, get to the gate.  Once at the gate, I feel like the obstacle course is completed!  The whole process can be exhausting for me.

The Airplane:    It’s difficult for me to be squished in an airplane seat for an extended amount of time.  When the flight is over, I don’t know how well I’ll move being that I’ve been sitting in a small, tight, uncomfortable seat for several hours. I’ll either have moderate stiffness or major stiffness.  I just never know. 

Here are some tips I picked up for traveling with a chronic illness:

1.  Pack early:  I started to set aside items for my vacation about a week before my trip.  I looked over all my medications and discovered I needed to refill one of them.  It’s good to do this early in case you need your doctor to call in a refill.

2.  Plan days of rest:  I planned two quiet days before my trip.  I slowly completed last minute tasks to get ready for travel, so I didn’t feel overwhelmed.

3.  Bring healthy snacks:  I really don’t like airport food.  I like knowing that I have my own healthy snacks that will make me feel good as I travel. Also, bring an empty water bottle.  Most airports have water bottle filling stations.  It’s important to stay hydrated while traveling.

I had a wonderful time visiting Aruba.  Thankfully, I didn’t have a flare.  The weather was beautiful.  My husband and I enjoyed walking most days of our vacation.  The obstacle course scenario which I described above was quiet interesting leaving Aruba.  There was a checkpoint, Aruba customs and security, US customs and security before finally getting to our gate.  I needed to sit down after all that removing shoes, electronics etc. during both security points.  But, once we landed back in the USA, we didn’t have to go through customs.  We picked up our luggage and out the door we went. It was a lovely vacation!

Finally, thank you for reading my blog.  During the month of May, my goal was to post weekly about living with spondylitis in recognition of SpA Awareness Month.  It’s been great!  Moving forward, I will continue to post to my blog twice a month…unless a pressing issue comes along that I want to write about.  Please share your comments with me as I would love to hear your feedback.  As a final push for SpA month and to spread awareness, if you are comfortable, please share this blog on Facebook or retweet on Twitter.  I would greatly appreciate it!