Heart To Heart Thoughts From Inside My Chronic Life

  • bedvsout-selfie

    The look changes. The diseases do not. On the left, in my natural habitat. On the right, after spending energy to “clean up”. Oh, and sunglasses hide a lot. 😉

    Rheumatoid Arthritis is one of 100+ types of arthritis.

  • But it’s also not “arthritis”, as I knew it pre-diagnosis.
  • Yes, it’s joint inflammation, immobility, and deformity.
  • But it is not cartilage degeneration, like osteoarthritis.
  • Which is common starting in middle age.
  • RA is an autoimmune disease.
  • This means my body is attacking itself.
  • Specifically, the lining of my joints.
  • RA can be systemic, which means it shows itself well beyond the joints.
  • My eyes, lungs, heart, and autonomic functions are all impacted.
  • And RA affects people in every age group.
  • Including over 300,000 kids in the US.
  • I’m always in pain. Like, 24/7.
  • But the fatigue, both from RA and fibromyalgia, is sometimes just as hard to handle.
  • My outward appearance generally doesn’t match how I feel.
  • I evaluate every task, every day, to determine whether to perform as normal, perform with modifications, or skip.
  • Yes, this includes showers, which zap my energy.
  • Some days, I can manage a short one in the evening before bed.
  • Some days, I can’t.
  • I contemplate my toothbrush twice a day.
  • Sometimes, I can’t manage the back and forth motion required for my manual brush.
  • Other times, the vibration of my electric toothbrush is unbearable.
  • This constant evaluation is mentally exhausting.
  • Fatigue does not mean “in need of a nap”.
  • It’s limb heaviness.
  • It’s brain fog.
  • It’s like having a bad flu, constantly.
  • At least once a day, I break down in tears because of the pain.
  • Pain keeps me from sleep 3-5 nights a week.
  • Opioids do not take it away.
  • Most days, they dull the pain.
  • And are necessary for me to function at all.
  • I use them in combination with other therapies and treatments.
  • So don’t be surprised if I smell like menthol.
  • It’s just the Bio-Freeze.
  • Medical marijuana is not legal where I live.
  • But it’s on the ballot again.
  • I’m scared that millions of chronic pain patients like me are getting lost.
  • While we debate the serious and separate issue of opioid addiction.
  • I have a permanent disabled parking permit.
  • Which I only use when I need it.
  • I have received angry stares and comments because I don’t “look” sick enough to have one.
  • If you have heard about a treatment, I have tried it.
  • Yes, this includes medications, alternative therapies, diets, protein shakes, vitamins, balms, and yoga.
  • Even if it worked for your mother/sister/uncle/grandpa/spouse/roommate, autoimmune disease affects everyone differently.
  • And though I use some of them, my diseases continue to be mostly unresponsive to treatment.
  • Save the unconditional love and support of my wife and son, a treatment that work wonders.
  • Despite all of these challenges, I try to stay positive, especially online.
  • I share photos of wonderful vacations I take with my wife and son.
  • But I don’t share the activities I skip to rest in bed.
  • Or the number of days I cannot even bear to get out of my pajamas.
  • The same goes for work, entertaining, date nights, soccer matches, and well, everything.
  • Many days, my bed is both my office and my dinner table.
  • And my computer and TV are my views to the outside world.
  • So I often feel apart and alone.
  • If I cancel plans we’ve made, it’s because I’m in really bad shape.
  • It is never because you are not important to me.
  • And it breaks my heart that you might think otherwise.
  • That you might stop inviting, stop calling, stop writing…
  • I want to do everything I could do before I was diagnosed.
  • But I can’t.
  • And resetting my own expectations is the hardest task of all.
  • I often feel guilty saying “no”.
  • I often feel like a failure when I can’t do what others can do.
  • Seven years in, I’m starting to accept that I need a different balance.
  • “No” allows me to be better in control of my chronic life.
  • So my disease no longer controls me.
  • It’s hard, and I’m far from perfect.
  • But no matter what comes, I plan on enjoying the hell out of this crazy, beautiful life.
  • As it is, not as I wish it was.
  • For as long as possible.

Thank you for listening. Namaste.

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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’ve read, Mr. Frey had long taken powerful biologic drugs to slow the progression of his disease. These medications suppress the body’s 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.

 

 

 

 

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!

 

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.

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?

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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.