The Broad is Back!

September 16, 2017

Dealing with Change

I truly am like a bad penny. I keep turning up, even when you think you’re done with me.

I am going to make a concerted effort to be back. Last I posted it was February, and I wrote about possible treason. Here it is September, and the same story is blowing up the news. The administration is still in power. The stories get scarier. And Congress is still full of spineless wonders. That’s what I called them in my penultimate post.

But I am a very different person than the one who last wrote. Well, yes and no. Last February I was midway through a journey that got settled in June. I’m going to recount it here because much has happened, and because of it, I am learning to live with a new reality. And not just the political one.

It’s been a whirlwind. I’ve written in the past about my son being ill. He just wasn’t getting better, and the doctors were starting to give up hope. He was slowly sliding into a life of permanent disability.

By May, symptoms were at their worst, and on Mother’s Day, he was an hour or so from death. And that was the best thing that could have happened to him.

Seems that to treat this and that, he was on four medicines that were leeching his potassium. The morning of Mother’s Day, he and I were out walking the dog when he fell on the gravel path. It’s a hill, we laughed about it as he was unhurt, really, and I went on to work. By that afternoon, he had to crawl to the car so my mother could take him to ER. By the time they’d made the 5 minute trip, he couldn’t get out of the car. By the time I got there 3 hours later, his arms didn’t move. Next, they told us, it could have been his heart stopping had he not come in. He was berating himself for making a fuss.

After 3 days in the hospital on IV potassium and 3 more weeks of trial and error, his potassium is stable. He is as good as he’s gonna be. Many of his symptoms were of low potassium, but because they are also the symptoms of the things he’s being treated for, they were overlooked.

We found the answers and now it’s just time.

But at the same time, I was seeing doctors because I knew something was off. My GP was getting frustrated, specialists ruled out most major diseases, and to make a long story short, finally, it was discovered that I have Sjögren’s Syndrome.

What’s that, you say? One of the most common auto-immune diseases in the US. But because this is me we’re talking about, no one knows what it is (I have a habit of flummoxing doctors).

And while I’ve been searching for answers since July ’16, things have really accelerated. In fact, a test this past April came back “suggestive, but not definite,” but the test another GP ran in June came back “hell, yeah!”

Sjögren’s most prevalent symptom is dry eyes and dry mouth. Doesn’t sound too bad, eh? Actually what got me to the doctor was the fact I was falling asleep driving. Literally. I thought that might be a bad thing. Symptoms include profound fatigue, muscle and joint aches, depression, peripheral neuropathy, and memory problems. I’ve got all of these symptoms and a few more.

I was working as a thrift store manager for a not for profit, a surprisingly physical job, and my doctor didn’t want me doing it any more. I was also a part time professor, as that’s my “real” job, and living in Tennessee because of my son’s health.

Presto change-o. We are now living in the Bronx again, and I’m back to being a full time part time worker. I teach five courses at two schools, but that keeps body and soul together. Son is back working two part time jobs. He’s not ready to go back to his career, which is acting, but he’s slowly but surely getting better from being severely ill for five years. It’s a process.

I used to be one of the most high energy people around. I now spend more time in bed than ever. I used to sleep 5-6 hours a night and not break a sweat. Now I’m exhausted if I don’t sleep for 8, and I honestly try for 10 a night. It’s a bone deep physical exhaustion. The depression doesn’t help. I’m taking meds for that, which help but don’t fully alleviate it.

I’m usually a very private person, but I’m making a concerted effort to be more vocal about the struggles of living with Sjögren’s. I spent the years 15-48 living with endometriosis, another “invisible disease” that upended my life, and I learned then that more people need to learn about these things. Young women today are still being told the same sexist claptrap I was told when I had active endo. If sharing my story helps someone or raises awareness, then talk I shall.

Luckily, I feel fully alive and engaged when I’m with my students, bless them. My passion for teaching is still burning bright. My passion for social justice and change is still burning, but I’m learning how to live with a disease that’s getting more and more debilitating. To be honest, this is messing with my head, too.

I work harder than ever at remaining an optimist, about being positive. I know that getting back to my writing is a big part of this journey, so I’m back.

I can’t help but be political, but I am not sure how this blog is going to evolve. All I know is that I feel compelled to write, so write I will,

The Broad is definitely back yet again.

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