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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 not “arthritis”.

  • It is an autoimmune disease.
  • This means my body is attacking itself.
  • RA is systemic, which means it can attack anywhere.
  • Along with my joints, my eyes, lungs, heart, and autonomic functions are all impacted.
  • I’m always in pain.
  • 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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Election 2016: Change Comes From Within (The Voters)

DISCLAIMER: As loyal readers know, my blog is focused on living with Rheumatoid Arthritis. From time to time, I wander off topic (cooking, travel, politics). Today is one of those days. This year’s Presidential election has been the ugliest and most vitriolic I can recall, and I’ve been feeling a bit helpless. The below outlines my thoughts on what we, the citizens, can do to change the political climate. Thank you, Carla, for your feedback. And as always, thank you all for reading.

“Every nation gets the government it deserves.” – Joseph de Maistre

Since I’m not running for office, I don’t have to follow the #1 rule of campaigning: don’t insult the electorate. Plus, I’m going to constructively criticize (not insult, I hope) all of us with three numbers. 15. 96. 37.

Let’s look at the first two as a pair. A December 2014 Gallup poll found that U.S. Congress has a 15% approval rating among the American people. There’s a little wiggle room in the exact percentages, according to Politifact, but in general, the numbers haven’t moved much in the last decade. And this means a whopping 85% of Americans disapprove of the job Congress is doing, whichever party is in control. In fact, head lice, cockroaches, root canals, traffic jams, and even Nickelback all boast higher approval ratings. The same poll did show that Congress is more popular than telemarketers, North Korea, ebola, and gonorrhea. So, I suppose there’s a feather in their collective caps.

Now, want to guess the second number? Almost 96% of incumbents are re-elected to Congress. Despite the fact that we’d rather listen to Nickelback while getting a root canal. This cycle, we’ve heard a ton on both sides about how voters are “fed up” with career politicians, how they want our leaders to fix the “rigged system”. A 15% approval rating certainly supports these sentiments. But the media coverage on voters’ motivations largely misses the other piece. We are not victims. We the people continually ask these very politicians – the ones we think are terrible at their jobs – to make our laws and spend our tax dollars. Year after year. Election after election. 96% of the time, in fact. Why?

Before we attempt a diagnosis, let’s dig into a third number. 37. This is the percentage of voters who turned out for the 2010 mid-term elections. As Pew Research points out, midterm voter turnout since 1948 represents a 15-20% decrease from Presidential election years. The fact that our high point is only 52-57% is cause for concern, but that’s an issue for another day. It seems that many millions of Americans wake up every four years to vote for our highest office, then simply tune out until the next Presidential election. Not the best way to change a rigged system.

So, back to the question of why. The numbers suggest that both voter apathy and polarization play a role.

Voter indifference is a fairly easy diagnosis. Americans overwhelmingly disapprove of Congress, but we keep re-electing the same people to serve. Minus the media spectacle inherent in a Presidential race, most Americans don’t even turn out to cast votes at all. But America isn’t a monarchy, and whether the President shares your party or not, Congress and state/local officeholders impact most of our lives more than the individual serving in our highest office. We simply aren’t paying attention most of the time, for most political races.

Yes, a slim majority of us vote when the Commander-In-Chief is on the ballot. But many of us don’t force politicians to earn that vote. We check a box based on our party preference. Increasing polarization is one reason we are not likely to see a Presidential landslide in either direction. It may also explain why third-party candidates have trouble gaining traction. Regardless of individual policy positions or qualifications, each of the two major party candidates is likely to receive 42ish% of the popular vote, just because of the “R” or “D” next to their name. And the undecided population dwindles with each cycle.

We’re further polarized by the hyper-partisan media bubble, which reinforces the idea that “our” side is good and “their” side is evil. We see pundits on TV talking past each other, and we do the same on our Facebook feeds, reiterating party talking points. Think about what happens after every Presidential election. The “winning” side heaps praise on the White House for the next 4 years, taking credit for all positives. The “losing” side blames every negative thing on the White House. These narratives are repeated by leaders in the Senate and House, and reinforced by the partisan media outlets we choose. We reward Bernie Sanders and Ted Cruz for ideological purity. We slam Hillary Clinton and John McCain for “compromising their beliefs” to find solutions. Winners and losers. Party over progress. We’re in a climate where it’s politically dangerous to even meet with politicians from the other side. Where our politicians refuse to hold hearings on a President’s Supreme Court nominee. Where the other side is painted as dangerous to the very future of the country. In short, we’ve officially reached a stalemate. As evidenced by that dismal 15% approval rating, this environment is endlessly frustrating to voters. But, it’s also the behavior we continue to reward, as shown by the 96% incumbent re-election rate.

The theme of 2016 has been voter frustration with the rigged system, corrupt politicians, and greedy bankers. And once again, we pin our hopes on putting a savior in the White House who will fix it for us. But change doesn’t reside within the Presidency. It resides within us. We decide whether our politicians, both in our cities and in Washington D.C., keep their jobs. Imagine what would happen if voters harnessed our power and tried a different approach this year. Imagine an America where we stop re-electing party ideologues and obstructionists. Imagine an America where “work across the aisle” compromise and real progress are rewarded, not labeled as party traitorism. Imagine an America where voters pay more attention to real issues than to horse races. Imagine an America where voters step outside the partisan bubble and reject “us” versus “them” discussions. Imagine an America where we engage in respectful, nuanced dialogue about complex issues, and seek out media that does the same. Imagine an America where we stop shouting, and start listening to and learning from each other’s perspectives. Imagine an America where we vote.

These three numbers are disheartening. But they also remind us that we have power. We can speak out with one voice, and break the vicious cycles of apathy and partisanship. To paraphrase Mahatma Ghandi, let’s be the change we want to see in our politics.

Vote like it matters to our country. Because it does.

 

P.S. If you’re into these ideas, here are three of my favorite sites:

Pantsuit Politics (their twice a week podcast is required listening for me!)
No Labels
ISideWith.com

What are some of yours?

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.

 

 

 

 

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!

Showing off our legally signed marriage certificate!

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.