Heart Testing and House Cleaning

Ok, ok, I can accept help graciously. Really I can. Really. Am shaky and weak this morning. Was doing my out of breath thing from sitting up at the breakfast table and talking. Gads. Now, am reclined back trying not to be nervous about my Solu-Medrol treatment coming up in a couple hours. Mom is cleaning my kitchen and Dad is vacuuming -- not bad for one of those older model guys! I feel grateful and guilty.

Well, several folks have asked about the heart stress test so... Was definitely a drawn-out process over a few hours. Started with some radioactive dye that apparently hones in on my heart. Then lots of pictures. Then a regular ECG followed by ECG monitoring during the chemical stress test portion. Then the antidote to the heart pounder. Then they sent me to the cafeteria for a "high fat meal". Dad wheeled me down and I had the toughest piece of shoe-leather meat ever while my vegetarian Dad looked on amused, I think. Then I returned for more heart pics. Was really wonked and movement/sitting-up challenged for about 24 hours.

The chemical stress portion was really funky but only lasted for about four minutes. The pressure in my head was something along with the pressure in my legs and buzzy feet. Not sure that's the expected response. And, here's to an awesome tech and nurse. They were both bomb. Helped me physically and psychologically get through this. I also don't usually ask people doing tests about  the results, however, I did get from them that at a casual glance, it looked pretty normal.

Probably won't find out anything official for a couple weeks when I see the Rheumy again. Maybe my primary will call. Dunno. Guess I'm kind of getting numb to the continual search for a solution to the ever-intensifying neurowhack. It's been over two years. And, while I have hope for a hard diagnosis soon, I just figure it's more tests ruling things out for these tough clinically-based calls. And, what does one hope for anyway? That it's my heart or that it's my autonomic nervous system misbehaving and affecting my heart (a possibility that's been raised)?

Well, while I've been writing this, my parents have cleaned the whole place including the bathrooms. They're down-right handy! (She says, trying to joke about it).

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Have been reminiscing lately. Here's a photo enroute to the top of Glacier Peak. It's a lesser-known volcanic peak in Washington state probably because the main route isn't very technical. Was a nice trip aside from being on a rope-team with guys who thought I stopped too often to pee! And, yes, I'm sporting my neck-warmer on my head. Whatever works and keeps you from gear-futzing in the pack.

Changes

It's good having my parents here again.

It's odd and vulnerable being observed through my ups and downs of function through the day.

It's nice that they're getting used to how much time I spend groaning, stretching, rolling around on the floor with straps and/or digging into my muscles and hollering more.

It's amusing watching psychocat, Jake, as he wanders around disapproving of the new living situation.

It's sad and hard to sit by and watch my 77 year-old mother haul things up the stairs instead of saying, "Go sit down, I'll get that for you."

It's downright civilized not trying to work through this all. Naps are good.

It's scary, but not big bad scary, thinking about the heart tests I'll be doing today back at my "alma mater".

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Local alpine lake where I had my last solo hike and skinny dip a couple Falls ago. It was a beautiful day.

It is what it is

I seem to be repeating this overused phrase a lot. For some reason it has more meaning at this moment in time. It is what it is. I've spent a lot of time being fearful of worst case scenarios. Now, I'm far from being fearless by any stretch of the imagination. However, even though I can exercise various life planning options, I'm accepting that I just can't control the unfolding nature of my illness.

For whatever reason, my function has taken a dive recently. It's actually been quite stunning. I've said "uncle" and am on temporary leave from work. My parents, in their late 70s, are coming out to be with me for support and logistics. That really puts it in perspective for me. I have a slew of practitioner appointments, tests, and some IV goodies on the schedule.

What if I have to sell my second-story condo while it's valued much less than I paid for it? It is what it is.

What if I don't get better, or at least maintain, and I have to make huge changes that take away my independence since I don't have a caretaker? It is what it is.

What if ... It is what it is.

The old truck above is down by the creek in my town. I used to walk past it on trips to the main part of downtown. Classic old Pacific Northwest.

Yeah, I too wondered how that would work

What a weird, whacky snafu of a day. I want to assign blame but a portion belongs to me as well.

Suffice it to say, that a long chain of events led me to having a cardio stress test scheduled for today. I have significant shortness of breath that is getting worse. To the point of considering the ER a couple times this weekend. If I thought my life was impacted before well...it's quite horizontal these days.

I voiced concerns about this test. Someone along the way noted that they have all sorts of ways of doing this -- seated, meds, etc -- not to worry. But then there was the perky scheduler on the phone. She informed me they'd do an echo ultrasound of my heart, then I'd run on the treadmill, and then they'd do another echo. Umm, hold on, uh... could you back up there? Run on the treadmill? Uh, nope. I could walk slowly holding on, however, my motor skills would likely fade quickly -- similar to a wind-up toy going down. I thought my doc would have noted limits or issues on this test for me.

I placed more phone calls. Some were returned. Some weren't. My doc's office reiterated that she wanted me to do the test. I decided to go as I wanted the echo. My pal Mikel chauffered me in my car. He and I pondered how this would work. This test was at the hospital where I had brain surgery. Lots of memories came back as I walked familiar halls.

The long halls led me to quickly wonking which surprised me. I began walking through the molasses and soon started the slow bobbity walk. Why did I leave my cane in the car? Why didn't we grab a wheel chair? I hadn't been trying to deny my function. It's just hard sometimes to predict as it goes all over the place. And, things are different now. Am quicker to wonk and quicker to recover. Anyway, at this point I spied a chair by the coffee shop. Every ounce of energy was focused on getting to that chair.

I sat in the chair for a while vacantly staring and hoping the vibrating would stop. Mikel went off to find a wheel chair and soon we were off again. The assistant came out to get me. Surprise clearly was registered on his face. I walked across the room in a fashion I thought was my pretty walking. He and I discussed the appropriateness, or not, of the test. Mikel suggested I take the chair so I'd have it after the test. The assistant wheeled me back to the tech. They shared a wtf look with each other. I said I'd been asking along the way too.

Half-heartedly, I said I'd be game to try it for a bit but they probably wouldn't get the target heart rates. The assistant emphatically pointed out to the tech, "Man, you should see how she walks, she can't do this." While I knew he was right a small part of me inside said, "Hey pal, that's my pretty walking you're talking about!" In any case, a phone call was made and it was decided an echo would be done with the med/stress test later.

When the tech began the test, my arm/shoulder twitched a few times. I apologized and said that wasn't voluntary. Just my nervous system releasing stuff. She didn't say anything, re-positioned it and continued. I had a bigger trunk twitch about a minute later. She said, "Every time you do that I have to re-position you. Don't do that." Whoa, let me repeat. This is unvoluntary -- I have nervous system impairment. Oh, what's wrong with you? Oh, don't even go there. Actually I did for a while but could telling she wasn't tracking.

Mikel and I went out to the top of the parking garage. It was a beautiful warm, sunny day and we had a view of the city. I left through those same doors over a year ago after surgery. At that time I had hopes that, as a friend put it, the brain surgery would be the giant reset button. They didn't quite pan out. I contemplated my hopes now. I still have them. Just different ones now.