Back to square one

Me is back to hear results

The call I waited 9 days for came in yesterday and … the result is, I don’t have Carney complex. So, that’s one less thing that could have caused my heart tumour. My next scans take place in January, so we’ll see what, if any, changes my heart and my brain have gone through and go from there.

My entire family let out a sigh of cautious relief. Cautious because my doctor still recommends that they get an echocardiogram regularly . It’s amazing to me, that only 750ish people have been diagnosed with the disease since it was discovered in 1985. And that’s in the entire world!

So with the new brain scans, we’re looking for growth of and /or new aneurysms . If they show growth, they’re likely myxomatous aneurysms, like my first neurologist originally thought, and I still believe. I’m not sure what it means if there are more aneurysms, but I’m sure I won’t like it.

I’ve been getting bad headaches again, they were debilitating for about a week, a couple of weeks ago.

Lately, while walking the tiled hallway outside my condo, the caulk that outlines the tiles moves, not actually, it’s just the way my eyes see it. It’s almost like I’m under water.

It doesn’t get better from here. Just because something is benign doesn’t mean it can’t kill you, it’ll just do it slowly. The stress might kill me faster than the cerebral aneurysms!

7 thoughts on “Back to square one

  1. Well, at least you can still write about it., It’s going to be damn hard for me replying to someone who has Bought the Farm!
    Also, you will be happy to know i am still not praying for you at all!

    Maybe one day we’ll all get together for a nice meal and a bottle of wine… or two?


  2. I have a headache today. Nausea too. I tend to be vertigoish just about every day. I choose not to drive anymore unless 5 minutes away for a haircut. I have tinnitus that is 24/7 and I describe it as an electrical current going straight through my head. I’m not comparing my stuff to yours. Wait, maybe I am. But it’s not to say it’s the same. It’s what you wrote about the cauking in the tiles and just reading that made me more nauseous. I can’t imagine the degree of what you are going through and I find myself speechless as I consider what you are going through and the level of stress.

    1. Driving is something I should be missing more, but walking unaided is what I’m craving most. May I be so bold to ask, what is your particular malady? . As for the stress it’s a constant underlying fact of my life. If only because I’m such a perfectionist and everything I can do is so far less than perfect

      1. Maladies.

        I’m one of those people in life that is chronically enlightened with all manner of physical stuff (shit is my preferred word).

        As well, a boat load of trauma from day 1.

        By my early 20’s (I’m now 62) doctor’s would say, (after tests would come back “normal”), we don’t know what’s wrong with you but there is something definitely wrong with you.

        I just deleted a huge paragraph. It’s exhausting.

        I use to be a perfectionist. Illness over the years sort of rearranged that part of me. Though I wonder if in fact perfectionistic traits aren’t what keeps some of us going, if you know what I mean. That it motivates us for example towards walking unaided for you and me stretching every morning if even for 5 minutes though it feels more like torture.

        1. It is exhausting to write only to delete a large portion, if only because it feels like failure to us perfectionists. I agree that it is a motivator, but it’s also very frustrating.

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