This morning wasn’t great. I was being asked to do something at work that I considered unethical. Then I had a conversation with human resources where I was told that if I work more than 50% there would be a chance I would end up losing income down the road when I need to be off for a kidney transplant. I totally don’t get the logic but essentially I need to work less than 50%. About 20 minutes after that call I get a call from the kidney clinic that my function has dropped yet again. I’m now down to 6%. Aside from wondering how I’m even walking around with function this low, the emotional toll is a bit much.

I was talking with one of my coworkers who was telling me that I need to stop stressing over the work stuff. I know that. And I try. But I think sometimes it’s easier to stress about work stuff than to think about my health stuff. Work stuff is normal, everyone has it. I guess there might be a little art of me that really doesn’t want to deal with the health issues or to think about it for too long. I melted down yesterday at the thought of someone going through surgery for me. Someone who is completely healthy getting a part removed for my benefit. What if something goes wrong? Intellectually I know that this is a very safe surgery and that the reason they are so careful in working up a donor is so that nothing does go wrong, but what if? I can’t bear the thought. And so I keep my focus on work.

I don’t pretend to know why this is the path that I’m on in my life. That’s for God to know. But the closer I get to treatment the more emotionally charged this entire situation feels. I wish that I could just be a regular working joe, doing my job, dealing with regular problems and I didn’t feel like the weight of the world is on my shoulders.

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I bit the bullet

I’ve done it. I’ve modified my work schedule to work 3 days a week. I laid awake for part of last night with a feeling of anxiety wondering if I was doing the right thing. When I got up today my lips were swelled up and stinging, a new thing that started last week. I felt lightheaded and short of breath. These are new symptoms too. They think the lip swelling is an allergic reaction to a new medication. Because my kidneys don’t function well it’ll take a bit of time for the mess to leave my system completely so hopefully they’ll be normal soon. I kind of look like a cartoon character each morning because they swell in the night for some reason. All that said to make the point that I am doing the right thing. Confirmed.

I spent 2 hours at the kidney clinic today. They did a good exam and asked lots of questions. My sister was there and filled them in on things that I seem to forget. She feels I’m downplaying symptoms. I guess I do a bit, but I also find it hard to remember connections between symptoms and things I’ve done or even how often symptoms occur or how long they take to go away. It’s a little weird. I’ve heard that confusion and memory loss can happen at end stage renal failure, maybe that’s part of what’s happening. I’m not sure.

The physical exam was more thorough today than my usual visits and I learned that we’re in the dicey time when things can start to fall apart pretty quickly. That said, everyone is different so I could also stay at 8% for a while. That hasn’t been the pattern this year, but who knows? Maybe with a reduced workload I’ll be able to manage a while longer. The doc I saw today wants me to start getting blood work every 2 weeks instead of monthly (I bruise every time I get blood work so I may look like an addict soon).

I’m fortunate to be getting strong support from the administrative staff with whom work closely. They are a bit of a life saver at this time and I know that they are there for me just like I would be for them. I’ve seen the other side of that as well (absolutely no support) and the contrast is startling.

I’m incredibly grateful to have many strong women in my life – my sisters, friends, extended family and my yoga family. People who I don’t know well who take the time to reach out to me to say they care. It’s impressive. I love seeing women support each other. The competitive roles we sometimes find ourselves in as women are so counterintuitive, so fake and based in fear. Every one of us is enough and when we have each other to lean on when needed we can really pull off anything. I truly believe that. Women are strong in ways that not many men are. And I don’t say that as an insult to men, they’ve typically been socialized in ways that don’t develop their emotional intelligence much.

And so begins the next phase of my journey. A slower phase, maybe a gentler phase. Maybe a life-saving phase too.

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