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.
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.
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!
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.
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.
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 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.
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.
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:
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!
When where we've been intersects with where we're going
Crohn's Survivor, Mommy of 2, Full Time Working Mom…busting bellies one at a time!
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Day by day with RA ...