Friday, February 18, 2011

Dysautonomia Do and Redo

Frustration (was: threesixtyfive | day 244)Image by Sybren A. Stüvel via Flickr
We all have our pet peeves. My husband's pet peeve is having to do something over because it wasn't done correctly the first time. He always says, "Let's do this right now because I don't want to have to redo it later."

I admit this is good advice, advice I try and follow myself, especially when attempting something that uses up a lot of my scarce and precious energy. Which is why I am so upset that the dysautonomia consultation and autonomic testing I had back in October seems to have been a total waste of my energy.

A got a copy of the consultation report in November from my referring doctor and the first thing I noticed was that several of the recommendations I was given verbally didn't make it into the report. I read it a second time and the report failed to give to my health care team specific information about my dysautonomia symptoms or suggestions for treating them. On the third read, it wasn't even clear if my diagnosis of dysautonomia had been confirmed!

Then my neurologist and primary care doctors asked why I wasn't taken off my beta-blocker a few days before the tilt table test and other autonomic tests.


So now I'm in the process of arranging another consultation with the experts at the Mayo Clinic. I was really hoping to avoid all that this is going to entail, including out-of-state travel and a week away from home. This is why I opted for an evaluation from a Southern California clinic last year. But since that didn't work out, I'm resigning myself to the fact that this medical trip is needed while trying not to kick myself in the butt for not just going this route in the first place.

In case you were wondering, yes, I have gotten the "do and redo" lecture from my husband about this, plus a "they better do everything while we are out there" one. Sigh.

At this point, all I'm asking the universe for is the energy to get through this and the ability to just grin and bear all the hassles. Plus the words to address my husband's concerns because I can't do this without his help. Most of all, I need to get one rocking consultation report out of this, because if I can get this in hand all the trouble to travel for medical care will be both justified and quickly forgotten.

PS If you are looking for a good description of what to expect during a tilt table test, check out Ash's Health Blog. Perhaps I'll be able to write my own description of the process when I am finally administered the test correctly.

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WinnyNinny PooPoo said...

sometimes as inefficient as modern healthcare can be I understand why some of us get worse instead of better. sigh.

Migrainista said...

I totally agree with your husband - I HATE it when things are not done right the first time and I have to do them again. Espcially when it is "professionals" who just don't care enough to be careful the first time. They get paid either way.

I'm sorry you are going to have to have these tests again. For all of Mayo's faults, nobody would ever say they are anything but thurough.