Comment

Comment by Kasey on July 2, 2010 at 5:45pm

People are always surprised when I say that I'm never going to get better and that I just hope to get worse as slowly as possible. It seems that people aren't used to it when someone faces reality about their illness.

I have degenerative disk disease now and narrowing of the spinal space, etc. It doesn't get better in time...ever! I'd rather be realistic about it than to expect some magic cure.

For all of you in the US, have a happy holiday weekend. Everybody else have a good weekend too!

Comment by Kasey on June 30, 2010 at 12:20pm

Welcome Jasmine. I know exactly what you mean about chronic pain forums. I once made a group very mad at me by asking them NOT to have a Sunday prayer. I'd put up with all the prayer requests and blessings, but when they decided to have a formal prayer on Sunday I couldn't take anymore. Boy did my "friends" turn on me!

Comment by Tori on December 2, 2009 at 4:03pm

Welcome Ronin. I'd never heard of Inclusion Body Myositis before. Thanks for telling us about it, though I'm sorry it has to be from having to experience it.

I totally agree with you about the 'You're handling it so well' statement. It's kind of like people asking me, 'How's your back today?', as if the after-mass of what happened to me is like having a backache. It's nice they care enough to ask, I suppose, but that one just really bugs me.

Comment by Kasey on October 5, 2009 at 1:42pm

Ronin. I was doing Tae Kwon Do before my back started falling apart.

Thanks for telling us about your disorder. I have some idea what the loss of control is about from my very worst days. I'm sorry you have to deal with this.

Comment by Kasey on October 5, 2009 at 1:38pm

Welcome, Ronin! Yup, the "you're handling it so well" statement is irritating. So condescending! It makes you feel like the next step will be to pat you on the head and give you a cookie, doesn't it?

Comment by Ronin on October 4, 2009 at 7:28pm

Hello everyone! I'm new here.

I have a very rare degenerative neuro-muscular disorder called Inclusion Body Myositis. It is unknown whether it is an auto-immune disease, viral or what. Thankfully it is not genetic. I was diagnosed about 10 years ago. It is a very insidious disease that shuts down and destroys voluntary muscle tissue. At that time I was on my way toward getting a black belt in Tae Kwon Do. I was building furniture and had a very active life with my son and wife. Today, I cannot make a fist, barely hold a pen or cut my food. I cannot walk without holding on to the wall and need a power chair to get around and cannot get in or out of bed without help. Professionally I am a pharmacist and manage a local chain pharmacy. Thankfully, it is a brain not brawn kind of job. So that's my story. Of course there's a lot more but I try not to dwell on it for extended periods. One final thought, How many of you you are tired of hearing "You're handling it (your disorder) so well". Don't you just want to say F*** OFF!

Comment by Kasey on August 22, 2009 at 8:21am

No worries, jean Marie. I find your posts informative and entertaining. Besides, I don't run my group that way. The group is for the people who use it. Talk on!

Comment by Tori on August 21, 2009 at 4:16pm

Jean Marie - thanks muchly for this insightful post, and I'm so grateful for nurses (and other atheist people) like you.

It's tremendous that there's someone like you to take some nurses aside who are discriminatory, mean and hateful to some patients for no other reason than the fact that they are poor or because of their gender identity (this is so sick), or because a drug addicted woman has given birth to a child. I still believe there are more nurses who wouldn't do those kinds of things to patients, for any reason, but it does my heart good to hear from someone who confronts some who do. It's exactly what I would do, too.

Even though I don't have a great concern of 'bein' done wrong' by anyone in the medical community because I'm atheist, your words still did much to reassure me. At least in a sense, and I only mean that in the way that your words also confirmed my belief that some who are religious seem to not give a second thought that anyone who isn't what or who they think they should be seem to think nothing of treating others like 'less than'.

There was one nurse three years ago who was not very friendly, at all, and I did wonder whether she just wasn't very friendly or if it was because I was atheist. But I'm not a paranoid person, so I thought well, maybe I remind her of someone she doesn't like, or it could be anything - maybe it doesn't even have anything to do with me, even though she's friendly with all the nurses. But of course she worked with all of them. I just brushed it off, and still do - not everyone is going to like us, right?

I had a good deal of pain and I wanted even the last dose of morphine I was entitled to. I'm not a drug addict, and I know my Drs. knew that, so I assumed the nurses did too. But for some reason it just seemed to bug that nurse that I wanted to have even my last dose of morphine. So when she 'gave' it to me I could tell it was saline solution - I'm not stupid. Morphine doesn't sting going through the IV. She looked at me, I looked at her. I said, 'That isn't morphine. What's going on?' She said, 'Oh, well, I just have to flush out the line with the saline.' Now Jean Marie, you being a nurse, and me being a seasoned patient with quite a few frequent bed pan miles to my name, we both know I know an IV line has to be flushed out occasionally with saline. Okay, fine. I don't know if you're on the same page with me here or not, but as I've already said, I'm not paranoid, and I pretty well had a grip on what the nurses had to do and when they had to do it, and my IV line wasn't needing to be flushed out. She came in specifically to give me morphine - my last ordered dose, at my request and at the time it was allowed. I felt like she was suddenly deciding she was going to try to start treating me like I was having 'drug problems'. Suddenly having drug problems at that! lol. That would have been news to my Drs.! But it was just the whole idea of what she was doing, the way she was doing it that bothered me. She went and got the morphine and gave it to me. Dammit - I was the one lying in that bed, in pain and uncomfortable, my doctor had ordered it for me and I figured I was entitled to it and it didn't matter what she thought of me! I didn't need to feel bad about it, not for any reason, and certainly not for whatever her personal problem was.

Now, don't get me wrong. I fully understand that part of a nurses job is to be aware of any potential problems that may exist or arise with a patient with narcotics, etc. But come on, there was no such risk or problem happening in my situation and little miss nursey nurse and I both knew it. True, I didn't really suffer because of what she did - she did what she was supposed to do and what I needed her to do - but it was such a silly 'power' kind of game on her part for several minutes - unneeded and a waste of time, and why? Oh well.

I'm curious to see if she'll be there and caring for me when I return in December, but that will only happen if I have to be re-embolized. If I have to only have the angiograph to check that the embolization is still holding up in the aneurysm and that's it, it'll just be a day procedure (yay!) and I won't have to be in ICU.

But I don't really worry about 'retaliation' much - just how can I tell if anyone in the kitchen has spit in my food??? ha ha! Do they have access to my personal info?

The neurosurgeons at BNI are awesome and if they give a rat's ass about anyone's religious status (or lack thereof) they certainly don't let it show - they're absolutely professional, which is of course the way it should be - with all the medical professionals.

Hey Jean Marie, thanks for what you do for folks as a nurse, first and foremost, and then an extra huge thanks to you for going to bat for patients by taking nurses to the proverbial woodshed for giving mean, hateful, painful treatment to patients they don't 'like', or who's lives they don't agree with - we need many, many more health care professionals like you!

Thank you too (immensely!) for your efforts in addressing the administration regarding discrimination towards minorities, the poor, etc. I understand what you're up against. Though I am a white female and have, for the most part, received excellent care since the rupture of 'my' AVM, I have always been 'for the underdog', and I so appreciate you, and anyone like you.

It makes a huge hole in my heart that people would, could and do harm and withhold proper care to people because of the lack of money in their pocketbooks, the color of their skin, their gender, their gender identity, or any other reason. That anyone does this is incredible - but that people who are religious do it makes me want to harm them!! It makes me want to use a size 18 needle and miss, and miss and miss - and I don't even know how the fuck to draw blood - but I'd sure as shit get some.

Oh lard, now I'm rambling. Thanks for your post Jean Marie, and again, thanks for what you're doing for the patients - you're what we need. I appreciate all the great medical professionals - I know it must be an oft times thankless job for them.

Comment by Tori on August 21, 2009 at 2:41pm

KDelphi - If you're still having trouble with your pic, you can email it to me, if you'd like, and I can resize it and email it back to you.

Comment by Tori on August 21, 2009 at 2:27pm

@Andrew Cheadle - I echo your concern, and my own disdain, that our medical professionals mix religion into medicine.

Recently I have even read a couple of online articles about hospitals in the US that are implementing 'spiritualism', 'faith' and faith type 'healing' into their normal course of medicine, and personally I find that very frightening.

I don't know if this is something that health care professionals intend to ask patients if they care to participate in and then give them a choice to accept or reject, or if there will be people preying over them while they're unconscious in surgery or in their beds, etc., if there will be groups of people from local churches the patient doesn't even know gathered in the waiting areas preying for the patient, or to what extent they will ultimately plan to implement this horse shit.

What sick crap - and no doubt another way to waste someone's money.

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