The Other Side of Invisibility

Generally speaking, I’m not big into selfies. I prefer to take pics of my son and my dogs. That said, friends on social media will likely be familiar with the “progression of mediocre selfies” series; multiple attempts at family self-portraits taken during our adventures. Our crappy selfie skills have become a family punch line. But truth be told, I adore their candid silliness. ūüėä

For the last 18 months, I’ve been sick enough that I’ve largely disengaged from my previous everyday life. I don’t have to tell you all that, of course, because I’ve been absent here. Pain and fatigue are quite a tag team, as many of you know. They’ve largely limited my ability to write in complete sentences. But I’m slowly writing a post on my continuing pharmaceutical roulette, and I hope to feel well enough to get back to a more regular rhythm soon. I cannot thank you enough for sticking it out with me. 

At this point, you may be thinking “Girl, you weren’t kidding about not writing coherently. I mean, how do those two paragraphs even relate to each other?” But bear with me, because I took a mediocre selfie for this post. 

My selfie skills haven’t improved, but the caption says it all. When you’re chronically sick and mostly homebound, you can feel invisible. When everyone around you is racing to work, you can feel invisible. When your daily accomplishments include “got out of bed”, “slept for more than 3 hours straight”, or “made it to the doctor”, you can feel invisible. 

Much has been written about the frustration of the invisible chronic illness. But less is said about the invisibility we feel.  We are so often forced to the sidelines, as the world spins around us. So, this selfie proves, to me and to you, that I’m still here. Even without a job. Even without makeup. And it’s no accident that I’m holding a crochet project. If I take it slow and use the right tools, crochet is good exercise for my joints. It’s also a calming influence on my mind. I feel accomplished when I complete projects — in crochet, in the kitchen, or with my writing. And that’s crucial for my type-A personality. 

Is the feeling the same as closing a big deal or leading a strategy session with a business partner? As crossing a half-marathon finish line? As singing a solo in front of a crowd? Nope. But like my selfie, these hobbies remind me of where I am on life’s journey. They help me remember that I am here. And no matter what, I’m grateful for that. ‚úĆÔłŹ

More on Choices…

In 2012, I came off Methotrexate (MTX), a powerful DMARD (disease-modifying antirheumatic drug). It’s widely considered to be the gold standard for treating severe RA, often in conjunction with one of the biologics you see in those unrealistic, misleading pharmaceutical ads. And this combination¬†was occasionally somewhat¬†helpful in controlling my symptoms. I know, “occasionally somewhat helpful” is not a ringing endorsement. But I’m six years in, and I’ve not found any combo of drugs that has given me more than 30% relief.

If this drug was a key part of my best cocktail, why did I stop taking it? Well, as users of MTX know, liver toxicity is a serious concern. So, along with the weekly injections, patients require regular liver checks, also known as¬†monthly blood work. Yep, it’s pincushion central. And my liver function tests took a nosedive in July of that year. So,¬†my rheumatologist took me off immediately.

Fast forward to today. It’s¬†February 2016, and I’m desperate for something that will get me¬†any relief from the crushing pain and extreme fatigue.¬†Unfortunately, I’m mostly out of options. My last biologic stopped working, and because it’s Rituxan, I have to wait four months for it to exit my system to try another. (Aside: I’m running out of “others” to try, but that’s a ‘Choices’ post for another day…I smell a series here!)

While I wait, my best option is to restart a drug that has already proven itself to be detrimental to my liver. I’ll take every precaution, and my doc and I will be paying close attention to that particular organ. But my quality of life is paramount, so if there’s even a chance it’ll help, I’m taking it. So, tonight, I’ll be back to¬†Thursday evening¬†injections and¬†Friday MTX hangovers.¬†It’s¬†a¬†different kind of¬†#tbt. That’s Throwback Thursday, for those not versed in the lingo. I’m not posting¬†a picture¬†on Facebook, but I thought I’d share it with you, dear readers. I don’t think it would make sense to anyone else.

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Ain’t no party like a Methotrexate party…

 

Impossible Choices…RIP Glenn Frey

For those of us struggling with autoimmune disease, Glenn Frey’s death hits especially hard. In case you haven’t heard, Mr. Frey suffered with Rheumatoid Arthritis (RA) for 15 years.¬†And based on what I‚Äôve read, Mr. Frey had long taken powerful biologic drugs to slow the progression of his disease. These medications suppress the body‚Äôs immune system, which seems to have caused him to contract both acute ulcerative colitis and pneumonia. And his pharmaceutical-weakened immune system wasn’t properly equipped to¬†fight back.¬†Often, that is what “complications from rheumatoid arthritis” means.

 

This news was a sobering reminder of the impossible choices we patients face. So, I shared my thoughts on FB earlier today, and wanted to repost for all of you here:

In early 2012, the heavy drugs I take for RA disabled my immune system from fighting back against the flu. I ended up in the ER with sepsis, and required life-saving measures. This is the catch-22 of current treatments for autoimmune disease. Without the drugs, many people with severe RA (like Glenn Frey and me) cannot perform daily tasks, or even get out of bed. With the drugs, we are at greater risk of developing other illnesses, and our immune systems are so suppressed that we have a hard time fighting them. Beyond that, the drugs are very costly, they treat but don’t cure our diseases, and despite the commercials, they often only provide partial relief. So, it’s easy to understand the love/hate relationship we have with these drugs.

Thousands of stories like Mr. Frey’s, along with my own, motivated me to start¬†this blog in Jan 2011, with a goal of raising awareness and helping others battling RA. They are why I constantly seek new Eastern and Western options for treating my disease. They are why I practice gratitude daily and strive for a healthy, positive mindset. They are why I fuel my body with amazing nutrition everyday, to give it the best chance to fight back. They are why I share that nutrition with everyone I meet.

These pharmaceutical treatments are a key part of my toolkit, and I am grateful that they help me get out of bed most days. But I refuse to rely on them completely, and Glenn Frey’s story illustrates the truth of these impossible choices, and why we must keep searching for answers. Thank you for the music. RIP.

 

 

 

 

To Family, Friends and Caregivers of the Chronically Ill

My soul mate (and biggest supporter) chillaxing with me at my last Rituxan infusion.

My soul mate (and biggest supporter) chillaxing with me at my last Rituxan infusion.

I read a great piece today on The Mighty that I wanted to share with you all. It discusses the best ways loved ones can help the chronically ill people in their lives. You can find the article here.

Thanks to Danielle Myers, co-author of the CrossRoad Trippers blog, for a well-articulated, thoughtful post. So often, the people we love struggle to understand how to help us. I especially related to¬†“don’t make¬†assumptions” and “I still want to feel useful”. I¬†have said those exact words more than once. ūüôā What resonates most with you?¬†Anything else you wish people understood about your¬†chronic life?

P.S.¬†If you’re not reading The Mighty, a site devoted to¬†stories of disease and disability,¬†I definitely recommend checking it out. Lots of goodness there!

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. ūüôā

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.

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.

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