Author: Jessica

Jessicahttps://rudeawakeningsdotorg.wordpress.com

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…

 

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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.

 

 

 

 

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. 🙂 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!

Oh, Happy Day!

Rainbows rule!

Rainbows rule!

Most couples have one wedding anniversary. Lora and I, like thousands of our LGBT peers around the United States, have a few more dates to celebrate.

You see, when we got engaged in October, 2011, only six states (plus Washington DC) had legalized same-sex marriage. New York was the last to join this list in July 2011. Since its eponymous city is close to both of our hearts, we chose to marry there.

On a clear, crisp autumn day in 2012, we made our commitment to each other, surrounded by loving family and friends. October 13th is our anniversary, but legally, we were just beginning the journey. You see, when we returned home to Florida, federal and state law considered us no more than roommates. Like the good taxpayers we are, we filed our 2012 taxes. But we were forced to file separately, each of us checking the “single” box on our 1040s. Though our marriage certificate listed our new last names, it was not valid documentation to legally change our names on our passports, social security cards, or driver licenses. If either of us were hospitalized (as I was in January 2012), there was no guarantee the other would be allowed to visit.

2013 brought some big changes. On June 26th, the Supreme Court overturned the Defense of Marriage Act. Beginning that year, my wife and I were able to file taxes together. We also could have changed our names on federal documents. Of course, our state still didn’t recognize our marriage, and the ruling didn’t change that. Since neither of us wanted the hassle of two legal names, we continued to use our married names only informally. 2013 was also the year when the tide began turning broadly toward support for marriage equality. By year’s end, the number of states with legal same-sex marriage had swelled to 14, including our first wins by popular vote in Maryland, Maine, and Washington State.

In 2014, the wave of state support ballooned, with 35 states supporting equality by year’s end. Many of these states used the ballot box to achieve equality. Many others had appealed Circuit Court rulings for same-sex marriage, requesting that their bans be allowed to remain intact. In October 2014, the Supreme Court denied judicial review in a number of the appeals, effectively bringing marriage equality to these states. We celebrated the many victories, and lived our lives, waiting for our situation to change.

And it did in 2015. The year started off with a bang, when the federal stay on same-sex marriage in Florida expired. Despite Florida Attorney General Pam Bondi’s promises to continue the fight against marriage equality, we celebrated another important marriage event on January 6, 2015. On that day, Lora and I officially became a married couple where we live, in Florida. We spent the next few months happily enduring the (often painful!) process of legally changing our names, proudly handing over our 2.5 year old marriage certificate as proof of our union. We knew we could now visit each other in the hospital without a fight. That there would be no question of our relationship in the event of a tragedy. And we felt proud to live in a state where our son knew our family was respected. But we also knew that, if we should move to another state, we may not have the same rights.

That changed on Friday, June 26, 2015, the third marriage event in our journey. The day our marriage was unequivocally declared to be equal and just in our country, from sea to shining sea. Justice Kennedy’s stirring words moved me to tears:

“No union is more profound than marriage, for it embodies the highest ideals of love, fidelity, devotion, sacrifice, and family. In forming a marital union, two people become something greater than once they were. As some of the petitioners in these cases demonstrate, marriage embodies a love that may endure even past death. It would misunderstand these men and women to say they disrespect the idea of marriage. Their plea is that they do respect it, respect it so deeply that they seek to find its fulfillment for themselves. Their hope is not to be condemned to live in loneliness, excluded from one of civilization’s oldest institutions. They ask for equal dignity in the eyes of the law. The Constitution grants them that right.”

Our journey has only been a few years in the making. So many LGBT couples have the same story, but spread over decades, even 40-50 years. I can only imagine how those couples felt on Friday. It means something to read the official word of our highest court, saying that our relationships matter. It means something to see rainbows covering social media and public buildings. It means we’ve moved forward as a country. It means that the United States values the importance of equal treatment for its citizens.

October 13, 2012
January 6, 2015
June 26, 2015

It took three separate events, but as of last Friday, my wife and I finally have an equal marriage in the eyes of our country. And it feels fantastic!

P.S. For a full history of the country’s marriage equality journey, please see this detailed timeline: http://www.freedomtomarry.org/pages/history-and-timeline-of-marriage.

Why “Love the Sinner, Hate the Sin” Gets Under My Skin

I’m tired of the conservative Christian response to LGBT people. You know the one. “Love the sinner, hate the sin.” When it’s uttered, I always get the feeling that I’m supposed to be grateful. “Hey, thanks for loving my sorry ass while I punch my one-way ticket straight to hell!”

Lately, I’ve been thinking about why this statement bugs me so much. I mean, I firmly believe that all people are entitled to their own beliefs and opinions. I’ve read the Holy Bible, and though I may question why you cherry pick verses from Leviticus for literal translation, I respect your right to do so.

Happiness (and legal marriage) in New York!

Happiness (and legal marriage) in New York!

But I’m not grateful. Because that sentence, that sentiment, is a false equivalency. By saying that “we’re all sinners, but God loves all of us”, you’re suggesting that our sins are equal. But unless we’re talking about objectionable behaviors I exhibit — drinking alcohol, swearing — your sin and my “sin” are not the same. Why? Well, let’s allow the Oxford Dictionary to illustrate:

Sin: An immoral act considered to be a transgression against divine law.

According to this definition, a sin is an immoral act. Act implies behavior. Behavior implies choice.

Under this definition, there are really only two ways I can reconcile my “gay sin” as behavioral:

  • I must believe that my gayness is a choice. God would never have made me this way, so I’m bucking his will and choosing a “gay lifestyle” (hate that phrase). Or…
  • I must believe that, even though I was born with “same-sex attraction” (hate that phrase even more), God made me this way as a test. To stay in His good graces, I must make the choice, every day, not to succumb to it.

I don’t believe either of these is true. I believe that I was born this way. That gayness is a part of who I am, not just how I choose to behave. That a certain percentage of all species (God’s creatures, if you’re so inclined) are homosexual. And that living an authentic life is my best path to doing good while I’m on this planet.

I simply cannot believe in a higher power that wants us to actively deny who we are. If you do, and if your church wants to preach against me, that is absolutely fine. But don’t expect me to be grateful that you love me despite my “sin”. Because with that single statement, you’re doing more than judging my behavior. You are diminishing me as a person. And I refuse to be ashamed of who I am, or who I love. No matter what your religion says.

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!

 

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.

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.

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.