Smiles at the finish of the 2009 Disney Half Marathon!

Lookin’ Back In Front of Me…

I offer up this post with a nod to the late, great Stevie Ray Vaughan.

“Tightrope” is a fantastic song. The lyric quoted in this post title is one of my favorites. And it says a lot about my journey with autoimmune disease. In January 2009, I completed my first half marathon. Disclaimer: I have never been a runner, but I walked the Walt Disney World Half Marathon in just over 3 hours, which for me, was a tough physical challenge. The energy, camaraderie, and general adrenaline rush of “race day” hooked me instantly. So I completed another half in November of that same year. This time, I alternated jogging and walking, and finished in 2:55. I was astounded at what my body could accomplish, and addicted to the goal setting, the training, and the race day experience.

Smiles at the finish of the 2009 Disney Half Marathon!

Smiles at the finish of the 2009 Disney Half Marathon!

Three weeks later, I couldn’t get out of bed. My RA diagnosis quickly followed in January 2010, after which came a host of pharmaceuticals and their side effects. Five years later, I have added 50 pounds to my athletic 2009 frame, though my diet is healthier than ever. Percocet, Medrol, and Bio-Freeze are my daily companions, despite maximum dosage levels of Rituxan. I’ve added Sjogren’s, fibromyalgia, Hashimoto’s, gluten intolerance, vitamin D deficiency, and chronic anemia to my list of diagnoses.

When I look at photos of myself from those days, my thoughts take a predictable course:

  1. I start wishing I could turn back the clock. Wishing that none of this had ever happened. Which immediately leads me to…
  2. Stop looking at old photos. Given everything that’s changed, the past feels painful, so I choose instead to look forward.

Of course, the reality is that chronic illness did happen to me. It IS happening to me. In a recent post, I wrote about needing to accept my life as it is. And I cannot plan my best future if I don’t take cues from my past. So, I’m looking back to find inspiration for my life moving forward. I may never look the way I did then, and I may never finish a half marathon in under 3 hours, but I love races, and I can work toward another one.

I can, and I’ve decided that I will. :) My beautiful wife, some awesome friends, and I have signed up for the Las Vegas Rock and Roll Half Marathon, taking place in November 2015. Yes, training will be less consistent and more painful. No, my time won’t be as good. But I’ve got 179 days to get ready, and 4 hours to complete the course. I’m thrilled and frightened in equal measure, but looking forward to the journey!

 

Image credit: proficientwriters.com

Blogshift

I started this blog in January 2011, exactly one year after my RA diagnosis. With it, I hoped to raise awareness, share stories, and connect with others struggling with illnesses like mine. The writing has been therapeutic, and the RA / spoonie communities are fantastic. I’m grateful to play my small role. But lately, I’ve been feeling a little, well, restricted by the focus of my blog.

Though my diseases remain active, and I struggle with them daily, I no longer feel inspired to write about every detail.  However, thanks largely to this blog (and all of you!), I do feel inspired to write. About lots of things. And I’d like to use this space to do it. But it needs a new name, and a new look. So, you’ll be seeing some changes here in the coming weeks.

My journey with RA will still get attention, of course. But I’ll also post about all the things that occupy my days: my wife, my son, my dogs, life on the water in Florida, my experiments in the kitchen, new restaurants I’ve tried, books and blogs I’m reading, travel I’m doing, excerpts from fiction I’m writing, work stories, technology finds, gifted /special needs education resources, thoughts on politics, and my forays into alternative medicine, yoga, exercise, and much more. I work every day to live my fullest, most authentic life, and I want my reimagined blog to reflect all of it.

Thank you for the past four years of reading, growing, and connecting. You have made a real difference in my life, and I hope you’ll join me on this new adventure.

Namaste.

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

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.

Poster from the movie Cake: www.cakemovie.net

Pain, Opioid Addiction, and Cake

Poster from the movie Cake: www.cakemovie.net

Poster from the movie Cake: http://www.cakemovie.net

NOTE: This post discusses a movie that is not yet available in wide release. I have not had the opportunity to see it, though I have done significant research on its content.

Jennifer Aniston is racking up praise, and awards nominations, for her role in “Cake“. In the new movie, Aniston plays Claire Simmons, a chronic pain sufferer. That part of her character excites me, as it sheds light on the challenges of managing everyday life with unending pain. Unless you live with it, it’s impossible to imagine how pain touches every moment of every day, and this part of the movie will be eye-opening for many. Watching the trailer and seeing her character struggle, I keep thinking “I’ve been there”.

However, Claire is also addicted to the prescription narcotics she uses to manage her pain. By all accounts, her performance is admirable. Still, as a daily Percocet user, I cringe at the thought of once again being represented in the media as a drug addict.

Before I go further, let me state very clearly that I understand the perils of drug addiction.  According to recent studies, more than 2 million Americans are addicted to prescription opioid painkillers, and the number of deaths from these drugs has quadrupled over the past 15 years. It is a serious issue, and one that deserves attention. The problem is complex, and overprescribing is one of the causes. If you need help, I urge you to seek it here. Please.

Media is all over this epidemic, and “Cake” is just the most recent example. A running theme in “House” is the main character’s struggle with chronic pain and Vicodin addiction. Disclaimer: Aside from the pain = opioids = addiction story line, it’s one of my all-time favorite television shows. And the emphasis extends well beyond fiction. “The Doctors” are already using “Cake” to discuss the problem of painkiller addiction in America.

Again, I don’t disagree that painkiller addiction is a sobering and serious issue. But I take issue with the conflation of chronic pain patients and drug abuse. I suppose it’s easy to assume the problem largely rests with those of us that take these drugs regularly. However, evidence doesn’t support that assumption, no matter what the media portrays. A DARE Review of 67 studies on the incidence of chronic pain patients that became addicted and/or exhibited aberrant drug-related behaviors (ADRB) concluded that the correlation is very low. Specifically, the review found:

  • In testing for abuse and addiction, the studies included 2507 chronic pain patients on opioid therapy. 3.27% developed abuse/addiction. When the group was controlled to include only those patients with no history of abuse or addiction, the percentage dropped to 0.19%.
  • In testing for aberrant drug-related behaviors (ADRBs), 2466 chronic pain patients on opioid therapy were included. 11.5% showed ADRBs. When the group was controlled as above, including only those patients with no history of these behaviors, the percentage dropped to 0.59%.

This series of studies all conclude the same thing: chronic pain patients using opioid therapy overwhelmingly do not abuse these drugs. There are exceptions, but we are not a primary source of the nation’s problem. However, when the media tackles the issue of prescription drug abuse, it tends to focus squarely on the chronic pain population. This association has real impact, on policy and perception.

For the truth, I encourage you to listen to the millions of spoonies. We use opioids as directed. They don’t get us “high”. With them, our pain is dulled, and most days, we can function. We can work. We can take care of our kids.

Listen to the spoonies, and you’ll understand the struggles we face when we attempt to obtain these medications. Consider the number of chronic pain patients that:

  • Suffer every day with unbearable pain because our doctors, fearful of DEA prosecution, won’t prescribe opioids that could help us.
  • Drive each month to the doctor’s office each month to show our license and sign for our opioid prescription.
  • Face scrutiny from doctors and pharmacists when we ask questions about our dosage.
  • Must legally document the pharmacy we’ll use to fill the prescription, limiting our options to fill the prescription.
  • Must drive to the pharmacy to learn whether they have stock. The information cannot be provided over the phone.
  • Drive to multiple pharmacies to find stock. My record is 8 CVS visits within a 40 mile radius, in one day, to fill one prescription. It took 7 hours, and I was in tears from the pain of driving.
  • Endure judgmental looks and comments from pharmacists, doctors, nurses, family, and friends.

Without opioid therapy, I would not be able to work, cook dinner for my family, or ironically, make my numerous doctor and pharmacy visits. We need understanding, genuine help, and sensible laws, not blame and judgment. Come to think of it, the same is true for those that are addicted. But that’s a post for another day.

Perception needs to change, and the media wields great power to help. Their portrayals of chronic pain patients, however, often do the opposite. This movie is just the latest example. Though I will check it out when it’s released, I have very mixed feelings on “Cake”. And that’s not something you usually hear from me.

Rosie-the-Riveter

What Am I Worth?

Recently, I had an informal dinner with a member of my new leadership team, who we’ll call Victoria*. The subject of layoffs came up. It’s no surprise that the tech company I work for is cutting back its workforce, so we were discussing it and the potential impact on our business. I immediately thought of my own experience in July 2013, when my role was eliminated as part of a broad reorganization.

Since I just started in my current role 2.5 months ago, I thought I’d share my story with her….part of the “getting to know you” process. Back in 2013, I felt fortunate to be offered two alternate positions immediately, a rare luxury among the 17 affected people on my team. I knew I’d be taking one of those two roles, versus looking for a possible better fit. You see, I had returned to work from disability in late 2012. While I was out, my role was backfilled. When I got my doctor’s approval to return, I was “on the clock”. I had only 30 days to find a new gig. Needless to say, I was not anxious to repeat the uncertainty of that experience less than a year later, even with the offered 60 days of search time. After I explained this — my story with a happy ending — she paused thoughtfully for a moment. Her response left me speechless.

“I’m surprised they would offer you a choice like that, since you were just out on disability.”

Stunned, I immediately launched into my complete company resume, ticking off each accomplishment. Presumably, Victoria knew about my career successes, and brought me onto the team because of them. Her comment made me feel that I had to defend myself. That regardless of my achievements, my disability leave downgraded my stock as an employee.

I’m proud that in that moment, I defended myself. But I reacted from my back foot, extracting every bit of evidence of my professional worth. Here’s what I wish I had said:

Victoria, I have spent most of the last decade dedicated to our company. I take great pride in the work I do, and in what I have accomplished here. For more than half of my 8.5 years, I have also battled Rheumatoid Arthritis. I have won awards, received promotions, and regularly earned the highest review marks possible, both pre and post diagnosis. I am an asset, and my work earned me the choices I was given. My disability status was not, and should not be, a factor. Your comment suggests that I should have been given fewer options simply because I took company-offered leave when I was too sick to work. That is horribly insulting, both to me and to our company.

I realize that people make mistakes, that they say things without thinking. This did not feel like that. My view of Victoria, and of my place on the team, immediately changed. I am having a hard time believing that my experience won’t be affected by her view that “disabled = less deserving”. It seems assumed that I cannot produce the same level of results as my peers, because I have physical limitations. I wrote awhile back about my typical “Brains versus Brawn” response at work. Until now, it’s been largely effective, and has allowed people to get more comfortable with my disability. But for the first time, I’m concerned that I am viewed as an anchor, not as an asset.

* Pseudonym to protect her anonymity

BalletFlats-pic

In My Shoes, 2014 Edition

A blast from the past. I’m flaring HARD right now, and working on a few new posts. But this one, posted first 3+ years ago, feels appropriate to share today. Here are a few new things to add to the below list:

– To explain your illness to new work colleagues?
– To constantly tweak your diet in an attempt to find some relief?
– To spend extra time and money on Eastern medicine and physical therapy every month?
– To plan everything down to the minute in an effort to keep yourself out of a flare?
– To do everything “right”, and end up flat on your back fighting through excruciating pain and fatigue?

I’m sure there are lots more. What would you add?

***********************************

Have you ever imagined how it would feel:

– To require an assistive device to open a jar?
– To be unable to grip a pen or a fork?
– To ask for a child’s help opening a toothpaste tube or bottle of water?
– To be stuck inside a room because you can’t turn a traditional doorknob?
– To cancel plans with friends because you hurt too much to get out of bed?
– To pack a cane every time you leave the house, just in case?
– To shop for a wheelchair as backup for days when you can’t walk at all?
– To eat healthy foods and gain weight uncontrollably because of the drugs you take?
– To inject yourself with medications weekly?
– To require a seat for your shower?
– To purchase a “days of the week” pill sorter to keep track of your meds?
– To endure stares and comments when you park in a disabled spot, because you don’t “look” sick?
– To be unable to move when you awaken each morning?
– To endure a monthly IV infusion for the rest of your life?
– To smile through tears when you encounter a firm handshake or embrace?
– To be unable to wear half the shoes in your closet because the heels are higher than 1”?
– To regularly face drug side effects, including headaches and bouts of nausea?
– To battle extreme fatigue on a daily basis?
– To watch from the sidelines while your child plays in the park?
– To be told you’re too young to have arthritis?

I never did, until I was diagnosed.  Now, these “imaginings” are my daily reality.  I put it all in perspective by remembering my blessings, but I won’t lie.  It’s a constant struggle.  If you know someone with RA, please remember to put yourself in our (very sensible and flat :)) shoes.  Awareness begins when our friends and family understand how this disease impacts every facet of our everyday lives.