I am a good test taker. I always have been. Unfortunately that makes things a little difficult when it comes to the medical community.
I know something is wrong. I’ve known something is wrong for several months. My tests all look good. It can’t possibly be a big deal right?
There is a great deal of evidence that women present differently than the male based “standard” in a lot of conditions. There is a great deal of evidence that women are dismissed when they report symptoms. Historically I have found that my instincts are probably more reliable than a few tests:
I told my mother I had a tummy ache. She said it was because I’d eaten too much (chocolate). I said I couldn’t get up. She said I shouldn’t stay home from school. 24 hours later my appendix burst on the operating table.
I had a surgeon ask me flat out if I was sure he should take out my gall bladder. After all I was pregnant and the tests were not definitively bad. After the surgery he said my gall bladder looked like a green raspberry it was so full of pencil point sized stones. Yes, it needed to come out.
I had a GI specialist do a CT scan. All the other doctors and nurses were whispering colon cancer under their breaths. Late that evening he came in and told me not to worry. It couldn’t be cancer. It was probably crones disease. How can you possibly take away a diagnosis like that unless you’re sure? He was sure, based on the tests, and he was wrong.
I had persistant bleeding, a little anemia. It’s that whole peri-menopause thing the doctors told me. The anemia wasn’t that bad – take some iron. Talk to a gyn about an ablation, you could force menopause that way. The gyn did a biopsy (as standard procedure) but everything looked good. It did force menopause. I had endometrial cancer and a hysterectomy.
I’ve had high blood pressure that didn’t respond to blood pressure meds. That’s because the rise in blood pressure was indicating pain (which I and really bad at reporting). I’ve had blood clots with both cancers, and it’s a good thing because treating those blood clots is the only thing that got the cancers diagnosed. It’s not like I haven’t gone off the rails on tests, just not in predictive or indicative ways.
So for the last two weeks I’ve been taking tests. They all look great. That’s supposed to be good news. But I know something is wrong. My experience tells me the harder it is to find what is actually causing the problem, the harder it’s going to be to address it. Still more tests. Still more to come………
I’ve been thinking a lot about support. I’ve looked at some of the ways I give support, the ways I ask (or don’t ask) for support, and about the kind of support I need. I’d like to think I’m aware of how much support I am given in my daily life. I am grateful for that support.
I see more and more posting on social media in judgement of support. Things like, “If you don’t march you can’t say you support the cause.” or “Marching doesn’t do anything, if you really want to support change….” My feed is full of articles about what it means to be an ally, and what it doesn’t. I am watching a heated and emotional battle that demands choosing sides. Once you’ve chosen a side ANY sympathy, compassion, or points given to the other side is a betrayal. There is no room for exploring nuance in that kind of “debate.”
I have often been offered support that really wasn’t very supportive. There are a lot of reasons that happens. Sometimes I’m just not ready to accept support. Sometimes I’m not willing to be vulnerable enough to need support from that particular person. Sometimes it’s help for something I’m quite capable of doing myself (as long as I don’t need to do that other thing I really can’t do alone.) I have been offered support that makes demands of me. I have been offered support that is well intentioned but not in my best interest.
Most of the time I still find a way to be grateful for the intention. However, I have also been known to explode and shut my “supporters” down. Over the years I’ve come to recognize that most people offer support based on their experience. They offer the kind of comfort they would like. They offer the kind of hands on labor they are comfortable with, or skilled at. They present things they have been told worked for other people they know in “the same” shape.
Sometimes people offer support to feed their own egos. Sometimes people are sure they know best, and they won’t listen. But most people are willing and able to have a conversation about support, and what that might look like in any particular situation. The problem is, often when support is necessary the conversation itself becomes too much for the person in need to handle.
Sometimes one of the best ways to be supportive is to be willing to intervene and educate the well intentioned but misguided supporters. I’ve done that. This week I’ve seen that done for me. It doesn’t always help, but it is very much appreciated.
I don’t know what day it is. I’ve been running so fast trying to keep up, to catch up. With the holidays approaching I know it’s only going to go faster, so I am looking for balance.
I was sure that today was going to be one of those days when I didn’t have time for anything. I had too many appointments, too many commitments. I’d meant to make some calls and move things around, but never got around to it. Panic!
Then I looked at the calendar again this morning. There’s that button that says “today” and makes the cursor go to the current schedule. Seems like the crazy Monday is NEXT week. I still have time to make those phone calls. I have different things to do today, and no so many. I can do this.
This week my goal is to try and stop compartmentalizing my life. I get into trouble (too much to do) when those compartments start bumping into each other. Maybe if it was all one thing it would be easier to keep it all straight.
I’ve got a lot of projects in the works. I’m doing some more speaking. I’m planning an interfaith ritual as part of my post Parliament commitment. I’m finishing up a year’s book work for a non-profit and stepping up to head the board. I’ve still got students in my Wiccan tradition. I’ve still got Orion, his annual meeting is this month. I’ve still got Gilda’s club, and my women’s group and friends I need to check in with. I’ve got another book to write!
Sometimes when there’s a lot on the plate, something has to go. This time I’m still finding myself in the habit of conserving. I’m not really pushing my edges physically at all. I think maybe, what I need to finally let go of, is my fear of not being able.
I’ve spent so many years being physically cautious. I’ve had to have the energy when I needed it and so have always tucked away a little extra when I could. I’ve paced myself physically, insisting on lengthy breaks between tasks. It really was necessary. When I couldn’t do that I’d end up in bed for a day, or days. I’d do too much and then really hurt myself.
Now I can do so much more, and I’m excited and grateful that I can do so much more. But I still find myself being cautious, taking breaks I don’t really need. I avoid taking on large projects because I’m not sure I’ll be able to finish them. What has to give is this fear. It’s time to fly.
When I hit those edges I’ll know. When I need to take care of myself, I’ll know. When I need to just stop and come back another day, I’ll know. I may not be able to do it all, but I can do it. It will be fun.