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« The one nice thing about going to that hospital | Main | The absence of fear »

Comments

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Pretty Lady

Freakin idiots! Lame-ass bastard sadists! Bumbling fools! I am making it part of my life's mission to have basic common-sense patient-comfort behavior practiced in hospitals, like it being WARM ENOUGH or maybe decent BLANKETS or maybe someone to HELP people who have just gone through excrutiating nerve tests to get dressed again. JEEZ.

Zond-7 sounds extraordinarily sensible and sane. Listen to Zond-7.

I may have said this before, but as a professional I have been having very serious doubts about physical therapy for quite some time. If they're telling you to 'do more physical therapy' and physical therapy leaves you more exhausted and in more Bad Pain, as opposed to the kind of Good Pain you get when something is worked in a good way, I don't professionally approve of that. If passive stretching helps, do passive stretching. If keeping warm helps, keep warm.

And please, please see a nutritionist.

Pretty Lady

oops, I didn't read thoroughly enough. That PT referral recommendation sounds fine.

badgerbag

It was an hour before I was able to get dressed all the way. I did get my long underwear on and socks and then just gave up and pulled the rest of the clothes and my coat over me. But, yes, it was just silly. I got into my chair and stuck my head out to ask for help a couple of times, but each time lost my nerve and couldn't take the feeling of humiliation/embarrassment. In a way it was a relief they didn't catch me crying and flipping out.

Pretty Lady

And what's up with feeling embarrassed? What have you got to be embarrassed about? Nobody is embarrassed for you, or thinks you've done anything wrong in any way. Nobody thinks you're making this up, or exaggerrating, or that you're crazy. That's obviously not true.

It's obvious that there's something up with your nerves. Period. Thus your nervous system must be nurtured. Nurture nerves. Nurture nerves.

badgerbag

Still it was about 100 million times better than Staffnord.

When the doctor came back in finally she went "Oh good! You managed to get your socks on!" Hahahaha!

At least the first guy was nice, though that might have been from sheer sleep deprivation... ;-)

badgerbag

Myriad reasons. I do notice that I *need to believe I know what's happening and that I can control or affect the outcome* ... When that turns out not to be true, embarrassment or shame or both is my default state.

Pretty Lady

Look, I've been percolating an essay lately about how 'power is NOT control.' We grasp for more and more control, even over things that are obviously not controllable, the more powerless we feel. That's natural, but it works in opposition to genuine empowerment and genuine healing.

Pretty Lady

You have mind-boggling amounts of personal power, in the areas of connection and communication. You have an astonishing gift for friendship, for intimacy, for inspiration. That's where your power lies, and that is the power that brings you happiness in the midst of crisis, and that is the resource that is your ally in healing.

Not getting on top of something weaselly, undefined, indistinct and mercurial, and forcing it to Submit. You don't force a poem to submit.

minnie

ugh! next time I would like to come with you. especially to staffnord as they seem to be jerky.

Ms. Jane

Badger, you need to give yourself the freedom and space to be scared and feel your pain and freak out without beating yourself up about it. It's not like you're doing this stuff because you're a drama queen - you're reacting in a manner totally appropriate for your situation.

Be nicer to yourself, okay?

Donna

I don't know what to say. I guess it just proves that medicine is not an exact science; a lot of art and interpretation involved. I hate that the tests have been painful and that you still don't know what it is you have -- but how great if you find out it's reversible or nonprogressive.

bitchwhoblogs

I am finally delurking... the EMG's are heinous and its totally OK to not be OK with them. I hated having EMGs and kept thinking, that in addition to being terrified of losing the use of my hands, that it was pure torture to have long needles stuck deep into my nerve channels and then to be hit with a wave of electricity. It still stands out as a particularly wretched medical experience... Anyway, just to say that test is pretty extraordinarily horrible to endure... that said, I am sorry your are in limbo in terms of a dx, but so happy to read its not necessarily progressive and degenerative. I know there is still a lot to deal with...

elizabeth

Comments while reading: "Fuck.....Fuck.....Fuck.....Fuck..... Fuck!"

I don't know what to say, because to be like there, in the mindset of ALS; okay, know the stats, know the progression, got ALS, and then "Oh golly, maybe not, no, I don't think so." FUCK!

How can they screw up like that? ALS? Come on! Great news obviously, but thinking about how no one wants to spend some head time in THAT place and are you the 9 months or the random 20 years and how long will you have speech and all that and now: Sorry, not ALS.

I think I would have been crying WHILE they pried my hands off the Neruo's neck. Fuck!

Sorry.....and congrats...I think?

badgerbag

Exactly - a huge dose of mindfuck, and I'm going to be reeling from it for a while. I'm happy about it but kind of shell shocked.

Lisa Williams

Just checking in here after a while away and...Gawd!

Good news on the undiagnosis. The description of the pain and difficulty of the procedures almost made me cry. God, that sucks. And sweet baby Jesus, that's the least of it, isn't it? The whole wrenching experience and the continuing WTFness of it all. All I can do from this remove is witnessing, but really the whole thing just makes me want to do a lot more than witnessing -- it makes me want to break some rocks with something large, scary, and diesel-powered.

Strength to you & yours.

Lisa Williams

Just checking in here after a while away and...Gawd!

Good news on the undiagnosis. The description of the pain and difficulty of the procedures almost made me cry. God, that sucks. And sweet baby Jesus, that's the least of it, isn't it? The whole wrenching experience and the continuing WTFness of it all. All I can do from this remove is witnessing, but really the whole thing just makes me want to do a lot more than witnessing -- it makes me want to break some rocks with something large, scary, and diesel-powered.

Strength to you & yours.

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