Confessions of a Chronically Ill Overachiever

January marked five years since my RA diagnosis. It’s been a long road. Over the last couple of thousand days, I’ve received additional diagnoses and tried many remedies. I’ve gotten my hopes up and lost hope more times than I can count. Still, my life is mostly one continuous flare. And I have a confession.

I’m over it. ALL of it. The bone-crushing pain and the soul-shattering fatigue, of course. But also the endless planning, the constant balancing, the “perfect diet” quest, the pharmaceutical cocktails, the restrictions, the endless doctor visits, the guilt, the embarrassment….the end of carefree days. Most days, I can barely fit into my shoes. During the rare times I feel relatively “good”, I’m waiting for the other shoe to drop.

The relentlessness of chronic illness has taken a tremendous emotional toll on me, on my loved ones, and on my life. That’s inevitable, I suppose. But here’s another confession.

I believe I am making it worse.

I’ve been on this earth for 41 years. For all of that time, I’ve been a planner, a doer; what is commonly referred to as a Type-A personality. I face my setbacks head on, I stay positive, and I keep pushing.

Balance = more visits to beautiful Alaska! Photo credit: Jessica Hawk-Tillman.

Finding Balance = more visits to beautiful Alaska! Photo credit: Jessica Hawk-Tillman

And that’s the problem. I have been treating RA, Hashimoto’s, Sjogren’s, Fibro, tachycardia, and food allergies like temporary setbacks. In my mind, they’re something I need to push through so I can “come out stronger” on the other side. Case in point: In late 2011, I pushed myself so hard that I caught two viruses back to back. My body shut down, and I needed a central line and vasopressors to save my life. I had sepsis, spent days in the ICU, and was off work for 10 months. It should have been a wake-up call to me. It wasn’t.

In conversation, I would tell you that my expectations of myself are different than they were before I got sick. In my head, they are. But my actions continue to reflect my lifelong attitude toward any obstacle. “Forging on” is leading to crashes, disappointment, and feelings of failure. And if I want to do more than survive, I need to change.

This doesn’t mean I’m giving up. Quite the contrary, actually. I understand that while I need to keep a positive outlook, it must be balanced it with the reality of my daily challenges. I understand that I need to keep pushing for better health and new treatments, without pushing myself over the edge.

The amazing Toni Bernhard spoke about this very phenomenon in her most recent article. She discusses “positive thinking” vs “mental contrasting”, and wow. She nails what I’m trying to say above. Before we continue, please take a few minutes to read her thoughts at the link above. Go ahead, I’ll wait. 🙂

I’m now reevaluating every aspect of my life with these 3 questions. What’s my goal? Given my health, what are the obstacles I may face? How do I balance positivity and the reality of these obstacles, so I can reach my goal?

  • My work life today looks almost identical to my pre-RA days. The pattern of my days and weeks is predictable. I push myself during each work week, collapse most every night and weekend, and feel guilty and disappointed in myself when I do. Afraid to ask for accommodations at work. Afraid to say ‘no’, despite my body’s screams. Now, I’m speaking up. I’m requesting accommodation. I’m working with my manager to ensure my work allows me to contribute meaningfully, while keeping some spoons in reserve more often than not.
  • As we all know, doctors, pharmacies, and insurance require lots of extra energy to manage. They’re necessary, but I’m looking for ways to be a good patient and optimize these tasks. Here is one service I’m currently investigating. I’m pretty intrigued by the possibilities.
  • I’m opening myself to using assistance on long outings, remembering that I won’t enjoy myself (nor will Lora and Bear) if I am focused solely on my own pain and fatigue. Canes, rollators, and even my wheelchair are friends, not enemies. I’m even considering a motorized scooter.

This process is raw, and frankly, it’s a bit scary to share. But we’re all facing it. And I’m thinking it might be less scary if we do it together. So, I’d love to hear from you. What are your confessions? What changes are you making? What have you realized? Does “mental contrasting” resonate with you?

It’s taken five long years, and lots of lessons, but I get it. In that spirit, here’s one more confession:

I am chronically ill. It is not my fault, and it was not my choice. Still, there is a fulfilling life out there for me. It just looks different than the one I had before. I accept this, and I will do the work to live it. Every day.

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Kids Get Arthritis Too!

At the 2011 Juvenile Arthritis Conference, a number of children suffering with arthritis asked President Obama for help.  Here’s what they had to say:

I cannot imagine how difficult it would be to watch my son deal with the pain, medications, and uncertainty of my disease.  Unfortunately, 300,000 kids in the U.S. live that reality every day.  There is not enough funding, not enough doctors, and not enough awareness to help these children.  Please watch this short video, and help spread the word.  Thanks to the Arthritis Foundation for putting this together, and thanks to all of you for reading!

 

Happy Arthritis Awareness Month!

May is Arthritis Awareness Month.  And though you may wonder if awareness is really necessary, consider this.  There are over 100 types of arthritis; each with different causes, different symptoms, different severity levels, and different treatments.  This graphic, taken from the link above, illustrates the magnitude of arthritis perfectly:

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Funding for these diseases is dramatically low, given their impact on society.  For example, did you know that:

– Arthritis costs the economy $128 billion annually?
– Almost 300,000 children live with juvenile arthritis?
– By 2030, as many as 67 million Americans are projected to have some form of arthritis?

Please help support awareness and research funding by visiting the links referenced on this site to learn more for yourself.  Or, consider joining The Arthritis Foundation for one of the Arthritis Walks they’re hosting all over the country this month.  The events are family and dog friendly, and you can find one near you here.  I participated last year with an awesome group of friends and family.  I cannot walk this time, but I donated to one of my favorite teams in Tampa.

Thank you for your support – it makes a big difference for all of us!

Starting the Conversation…

Until two years ago, my physical health was something that I mostly took for granted.  Sure, I paid attention to the basics…eating (mostly) healthy foods, (sometimes) exercising, and getting regular exams.  However, I never believed I would have to deal with a serious health problem. 

 At age 37, I’m redefining my reality.  Life today includes another companion, Rheumatoid Arthritis (RA).  It’s an autoimmune disease — systemic, serious, and today at least, incurable.  The good news?  The disease is manageable through a combination of medications, therapies, and lifestyle modifications.  When detected early and treated aggressively, people living with RA can reset reality and live a mostly normal and completely happy life.  

I confess I didn’t know much about this disease until I was diagnosed.  Like many others, I heard “arthritis” and thought “senior citizens” and “needs some extra Tylenol”.  However, that’s not even close to the reality for this serious autoimmune disease.  If untreated, RA can lead to severe disability and, in some cases, can be fatal.  It affects roughly 1.3 million people in the US, including 50,000 children.  It is 2 to 3 times more likely to occur in women, most often those between the ages of 30 and 50.

At first, I debated about sharing my story, but with those statistics, my internal debate was a short one.  Through openness about my journey, conversation with others, and work with non-profits like the Arthritis Foundation, I hope to raise awareness, help others, and affect some change. 

What next?  For years, I’ve had a desire to blog.  All that time, I was searching for my voice.  I knew I wanted to start a conversation, selfishly knowing how much I’d grow and learn from a community.  But I never expected health to be my catalyst.  Yet here I am, finally writing my first blog post.  Jeremy will be proud. 🙂

So, this blog is a personal and public journal of my life, and the challenges that come with aggressive Rheumatoid Arthritis.  Through it, I hope to facilitate a conversation to raise awareness and affect change.  Even though I’m early in my journey, I know happiness and normalcy are possible for those with autoimmune diseases, and for those that love us.  So, let’s seek ways to thrive together, despite the daily challenges we face.