I know something good about people

I don’t need to tell you guys that America has had a difficult and divisive week. It’s all over the news. It’s all over social media. Just try to get to the office water cooler without hearing something terrible come out of someone’s mouth this week. I dare you.

Like many Americans I have had a roller coaster week in the wake of the election – the highs believing America might have it’s first female president, the lows of watching peaceful protests devolve into riots. Like many bloggers I feel the need to comment on the phenomenon that has occurred across our beloved country. After all, today we remember and thank our veterans for the very privilege to hold free elections and burn our flags and speak our minds.

I know there is good in America. I know there is good in all of us. Together. I want to take an opportunity to try to show the good in all of us, because right now it’s very hard to see.

I know there is good in every person that cast a vote in this presidential election, regardless of how they voted. They are good because they cared enough to vote when so many did not. They are good because they took the time to consider all the candidates and pick one that aligned with their conscience that they believed would further the progress of this great country.

I know there is good in every person that took to the streets this week to protest. They are good because they are seeking solidarity with like-minded individuals at a time when they feel marginalized and turning that energy into peaceful demonstration. I know there is good in them, even when their frustrations turned to violence and mob mentality. It is difficult to be a young person with so much fervor and no idea how to channel that in a world you feel is crumbling. They have the energy and the passion to be outraged, not complacent. Many are not even old enough to vote and they are involving themselves in the political system the only way they see how.

I know there is good in the police departments across our country. They are good because they answered the call to secure and protect our public freeways and city spaces despite the danger it presented to each officer. They are good because they let the protests progress peacefully as long as they could in a continued effort to build a partnership with their communities despite their personal or departmental political convictions. They are good because they were in enough danger to don riot gear and have bottles and fireworks and baseball bats hurled at them and stood their ground to protect innocent bystanders in the streets.

I know there is good in the commentators across our country. From the lowly bloggers like myself to the ministers with thousands of congregants to the television programs with millions of viewers. I know we all feel the need to say something about all this. I know many times our more colorful comments don’t come from a place of anger or disgust but a place of fear. That even the most vicious sounding rhetoric can come from a frightening feeling that we HAVE to convince people to see it our way or our world will end. Many of us are desperate. Desperate to find common ground with people. Desperate to say whatever it takes to get people on board with the side you believe is the ONLY way for our country to survive. They are good because they are a reminder that we have free speech in this nation and they bravely exercise it knowing there are people that will disagree and freely say so. They are good for making us think. For making us agree or disagree. For keeping the dialogue alive at a time when so many want to shut down and stop talking.

I know it is frightening right now no matter where you stand on the issues. Change is frightening, good or bad. People behaving under the influence of extremism on both sides is frightening. People not listening to each other or respecting each other and lashing out is frightening.

But I believe in us, America. I believe we have a future. I don’t know what that future looks like, but I believe we have been through difficult and divisive times before and come out better for it. It wasn’t easy then and it will not be easy this time either. But it is worth it. It is worth not giving up on each other just because we weren’t at our very best this week.

Let’s get back up, dust off the shock and the perhaps less than perfect reactions we had and try again next week.

Knowing when to fold ’em

In an earlier post I mentioned my husband was trying a new medicine with some crazy side effects but some potential to improve his Cystic Fibrosis. We waited, did all the research we could, then decided to roll the dice and try it.

CFers that rolled the dice before us had coined the term “Hell Week” wherein the body adjusts to the new medication. Some CFers had a rough few days, some had a rough few months, some had no side effects at all.

Since Orkambi is such a specific medicine for such a specific population it is something of a celebrity in our minds – even hospital pharmacies don’t have access to it yet. When it finally arrived at our door after two months of waiting we greeted it with the appropriate pomp and circumstance, cradling the box it arrived in with the same tenderness we would carry a new baby.

He started Orkambi on July 8, deciding to give it six weeks come Hell or high water before giving up. In his mind Orkambi wasn’t the answer to everything, but it could hold the key to future improvements in his condition. He was choosing to be an optimist in light of all the answers the rapid research and push to approval didn’t provide.

At first he had flu-like symptoms. Fever. Increased cough. He was up most nights sweating profusely, then shivering. We had been warned and were not alarmed by any of this. Eventually his appetite was better and he started gaining weight. His sputum even got thinner and came up easier. So at first he was awful…and better.

He went in for PFTs (a measure of his lung functions) and had dropped 6%. The clinicians figured he must have caught a cold on top of the new medication and he would improve with time.

By September the flu-like symptoms had mostly passed but he still felt awful, had no energy, and his PFTs were hanging out in the low 50s (his baseline is normally in the high 60s). The CF team decided to cut his Orkambi dosage in half and see if that helped.

By the end of September when his PFTs continued to not improve he was admitted to the hospital for what he calls a “tune up.” These visits usually last a couple weeks, then he administers IV medicines at home for a while.

It was a couple weeks past the end of his home IVs when he came to me and explained he still felt lousy even after his hospital stay. This is uncommon, usually after a tune up he feels better.

“I want to quit,” he said in defeat, as if he had failed somehow. We talked it over, decided the only controllable variable that contributed to his drop in FEVs was Orkambi. For all of the trouble, money and side effects we were so hopeful to reap some benefit, but it didn’t go that way for us as it had for others.

He was a trooper. He stuck it out through [as best we can tell] a couple colds and a hospital stay. He made it much farther down the road with it than many have, and certainly longer than I would have tolerated.

We didn’t see it coming, but I’m beginning to suspect the hardest part of stopping Orkambi will be the giving up on something that held such promise. We knew it wouldn’t be instantly life altering, but we were hopeful it would make things a little better in the near future, and maybe a lot better in the distant future. Instead it was a long and winding staircase leading to a steep drop.

He stopped Orkambi a few days ago. He still feels lousy, but hopefully as the weeks go by he will start to feel better bit by bit.