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michelleRN

Member
Joined
Jul 30, 2011
Messages
23
Reason
PALS
Diagnosis
10/2008
Country
US
State
VA
City
Richmond
So today I am irritated.

[Brief disclaimer: I'm a generally happy person. My progression thus far has given my neurologist the confidence to say that I will have ALS for "many more years," and at 31 right now, I'm hoping that sees me to my 2 1/2yos high school graduation.]

I still work full-time. Before diagnosis I was (humbly) a rock star ICU nurse, with some ED freelancing, had been for 5 years prior. I loved what I did. My world crashed with 3 little letters. Before diagnosis, I just thought I was imagining things, or out of shape, or being a wuss. After diagnosis, every tiny thing I couldn't do had a much larger, looming reason behind it. The inability to pump up a blood pressure cuff reminded me that I was dying. And the faces of my co-workers each time they saw me - oh, heaven help me.

I worked closely with Employee Relations to find a job "better suited" to my abilities (read: desk work). I was ok with that. 1st interview, EmpRel bombed, told the boss my diagnosis, and the entire interview was concentrated on if I would have impending mental decline. No, dillhole. Got letter from neuro fully supporting my desire to stay employed within some very minimal limitations (no lifting, no fine motor tasks involving needles, no excessive standing or walking).

2nd interview I got the job. It was an outpatient clinic and it was awful. Aside from the fact that a trained monkey could do that job, I had a boss who said she was supportive, expected differently, and - as I later learned - actually sent emails to EmpRel asking if she needed to follow the neuro and OBs (I was pregnant then as well) recommendations for desk duties only in my last **2 months!** of pregnancy. I never asked for it any sooner. Only when I had an extra 50-frickin-pounds to carry on my poor legs. Would she have preferred I go out on disability? Thinking back I may as well have. Nothing was ever good enough.

I looked for another job, with a doc I knew and who knew my diagnosis. Didn't think it would be an issue, he said he thought we'd be a good team and had worked well together before. Funny, though, how often he mentioned we would be walking through the hospital on rounds occasionally and would that be ok. Funny how, even though I said it would be fine, they never called me back.

By the grace of God, I was offered a job by one of the docs in the clinic to be his full-time nurse. I was and am so thankful to have an employer (both in him and the department administrator) who both often forget I have an "issue" but when I take extra moments to sit during a busy clinic day, or insist on the elevator for even just 1 flight, there's no second thought about it, no pitied look. It's "Yeah, ok, sure, we all needed a break anyway!"

All of that brings me to today's irritation, and if you're still reading... well thanks for listening.

I have to renew CPR every 2 years, and I'm due next month. 2 years ago I did ok, but I fumbled a little, and was sore as heck the next day. My worst hand can't do either motion with ambu bag and the mask on the mannequin - either holding the mask on firmly with fingers all spread around to ensure seal, or to compress the bag. Not happening, at all. I don't even want to think about compressions. They don't let you fake your way through. It's all out real simulation. So, I sent an email to the head of it, letting her know my concerns in late March. Copied my EmpRel contact on it, said if they needed any updated documentation from my neuro to let me know because I would be seeing him in early April. Let them know I can do a full simulation of the actions, to show that in a desperate situation I could fully walk someone else through it who might be more physically able than myself, whatever it takes. Only response came 2 weeks later, right before my appt, saying "we're working on the best solution and will get back with you before your class." I'm registered on May 3 and am still waiting. Send another email today to get an update, and of course get back Out Of Office notifications for both.

It's just frustrating. I guess that's the gist of this. If I were the head of nurse education, or the employee relations rep, I would have been on the phone with myself 4 weeks ago, getting a better feel for exactly WHY I'm asking for this - to put aside any doubt that I'm just trying to get out of an un-fun training task, and finding out what the solution is to an alternative. The truth is I could force myself to do it, be mildly humiliated when I'm either having to use one hand to position the other hand correctly or making pained faces as I try to will my hand into compressing the bag. I could force myself to do the chest compressions, hope that my arms don't spasm up, and be chugging the ibuprofen the next 3 days.

But I shouldn't have to. I want to be a good nurse. I want to be a responsible individual. I want to do all that I can while I can. But I also want to be able to say I can't and have someone listen and understand.
 
Michelle,
I'm truly sorry you are in such a predicament. You are someone willing to work, with a few limitations and finding no help available. Its actually apalling, that no one seems to be helping you accomplish the goals you set before you. It reminds me of a child with an IEP or 504 and knowing the rules are there, just no one adheres to them. Unfortunately, I don't have any answers, I can just be your sounding board and pray this gives you some relief. I will also pray for you from now until May 3. Please let us know how things work out.
 
I also am sorry for your predicament. And so proud of you for continuing to work! I can certainly understand how the look on your co-workers' faces is often too much to handle. I'm happy you've found somewhere to work where everyone works with you and it's no big deal. Can you get the letter from your doctor regardless? My experience is that 'they' decide they want something from your doctor the day or two before they require you turn it in to them. You can always just file the letter away or throw it out if not needed.
 
Good luck Michelle! We need more nurses like you.
 
Very frustrating - I'm so sorry. Wishing for the best!
 
I admire your attitude. It will carry you far on this journey! Good luck in May. I hope they will offer a viable solution for you.
 
Michelle, what an awesome spirit you have! Will be hoping all goes well for you and the family.
 
Thanks for the support everyone! No word as of yet, but I unfortunately didn't expect otherwise. It was nice to just get it all out :)
 
So today I am irritated.

[Brief disclaimer: I'm a generally happy person. My progression thus far has given my neurologist the confidence to say that I will have ALS for "many more years," and at 31 right now, I'm hoping that sees me to my 2 1/2yos high school graduation.]

I still work full-time. Before diagnosis I was (humbly) a rock star ICU nurse, with some ED freelancing, had been for 5 years prior. I loved what I did. My world crashed with 3 little letters. Before diagnosis, I just thought I was imagining things, or out of shape, or being a wuss. After diagnosis, every tiny thing I couldn't do had a much larger, looming reason behind it. The inability to pump up a blood pressure cuff reminded me that I was dying. And the faces of my co-workers each time they saw me - oh, heaven help me.

I worked closely with Employee Relations to find a job "better suited" to my abilities (read: desk work). I was ok with that. 1st interview, EmpRel bombed, told the boss my diagnosis, and the entire interview was concentrated on if I would have impending mental decline. No, dillhole. Got letter from neuro fully supporting my desire to stay employed within some very minimal limitations (no lifting, no fine motor tasks involving needles, no excessive standing or walking).

2nd interview I got the job. It was an outpatient clinic and it was awful. Aside from the fact that a trained monkey could do that job, I had a boss who said she was supportive, expected differently, and - as I later learned - actually sent emails to EmpRel asking if she needed to follow the neuro and OBs (I was pregnant then as well) recommendations for desk duties only in my last **2 months!** of pregnancy. I never asked for it any sooner. Only when I had an extra 50-frickin-pounds to carry on my poor legs. Would she have preferred I go out on disability? Thinking back I may as well have. Nothing was ever good enough.

I looked for another job, with a doc I knew and who knew my diagnosis. Didn't think it would be an issue, he said he thought we'd be a good team and had worked well together before. Funny, though, how often he mentioned we would be walking through the hospital on rounds occasionally and would that be ok. Funny how, even though I said it would be fine, they never called me back.

By the grace of God, I was offered a job by one of the docs in the clinic to be his full-time nurse. I was and am so thankful to have an employer (both in him and the department administrator) who both often forget I have an "issue" but when I take extra moments to sit during a busy clinic day, or insist on the elevator for even just 1 flight, there's no second thought about it, no pitied look. It's "Yeah, ok, sure, we all needed a break anyway!"

All of that brings me to today's irritation, and if you're still reading... well thanks for listening.

I have to renew CPR every 2 years, and I'm due next month. 2 years ago I did ok, but I fumbled a little, and was sore as heck the next day. My worst hand can't do either motion with ambu bag and the mask on the mannequin - either holding the mask on firmly with fingers all spread around to ensure seal, or to compress the bag. Not happening, at all. I don't even want to think about compressions. They don't let you fake your way through. It's all out real simulation. So, I sent an email to the head of it, letting her know my concerns in late March. Copied my EmpRel contact on it, said if they needed any updated documentation from my neuro to let me know because I would be seeing him in early April. Let them know I can do a full simulation of the actions, to show that in a desperate situation I could fully walk someone else through it who might be more physically able than myself, whatever it takes. Only response came 2 weeks later, right before my appt, saying "we're working on the best solution and will get back with you before your class." I'm registered on May 3 and am still waiting. Send another email today to get an update, and of course get back Out Of Office notifications for both.

It's just frustrating. I guess that's the gist of this. If I were the head of nurse education, or the employee relations rep, I would have been on the phone with myself 4 weeks ago, getting a better feel for exactly WHY I'm asking for this - to put aside any doubt that I'm just trying to get out of an un-fun training task, and finding out what the solution is to an alternative. The truth is I could force myself to do it, be mildly humiliated when I'm either having to use one hand to position the other hand correctly or making pained faces as I try to will my hand into compressing the bag. I could force myself to do the chest compressions, hope that my arms don't spasm up, and be chugging the ibuprofen the next 3 days.

But I shouldn't have to. I want to be a good nurse. I want to be a responsible individual. I want to do all that I can while I can. But I also want to be able to say I can't and have someone listen and understand.


Hi Michelle,

You responded to one of my posts thanks. I also am a Nurse with many of the feelings that you expressed. I'm much older than you, I worked until two years ago (self employed), I stopped after an MI. I could no longer deliver the care I wanted to give, then this ALS issue appeared 18 months ago. With the stage I'm at I would not be able to get a new job.

At your age I know you still want to help others and how hard it is to adjust to the idea of needing help. We all have a point that we need help from others. With young children at home my advice to you, if at all possible enjoy them as much as possible, find a support group, start talking with family and friends. Be prepared they will not know what to say or do, help them become aware of your needs and desires. When people see you can talk about it they become more supportive.

One barrier that I find is exactly what you are having, not being able to do all for yourself, even the simple things. You know how stupid I feel when I keep dropping my pills and then taking several minutes to pick them up! The first time being wheeled at the airport, I just wanted a blanket to put over my head to avoid the looks.

One thing that brought things into focus for me was when my youngest daughter came home one day, with a bucket! She said "ok Pop lets get started on the list".

When I was on the speakers circut, I gave workshops to nurses about caring for themselves. My advice was to be kind to themselves. You need to be kind to yourself. If CPR is such a big thing for your employer, they would not have hired you. I'm sure there are people around that know CPR, they train all employee's right? Also according to the law, they need to provide you with an acceptable means to accomplish you duties. CPR is not a duty, it is an emergency proceedure.
So evaluate the priorities for yourself and family and act accordingly. I wish you much strength.
 
Good point from your fellow RN. I am a certified HR professional and my first thought was: what reasonable accommodation for your essential functions of the job would you ask your employer for? Under the ADA, it is a joint responsibility for reasonable accommodation. The person needing the accommodation should explain to the company exactly what they are requesting and then the company should determine if that accommodation is 'reasonable' and not an undue hardship. For example, you might request some type of pointer dowel in order to help you push the elevator buttons. That would be reasonable because it wouldn't cost the employer a significant amount of money. Other accommodations can be aids for the visually impaired, etc. There is not a dollar amount set as 'undue burden' - it is a case by case determination.

Is being able to perform CPR an essential function of your job? If it is, then you must be able to perform it, with reasonable accommodation. If it is not, then your situation is irrelevant. Your HR Rep can refer to the job description to let you know what is considered essential. I would work these terms into my casual conversation - essential functions and reasonable accommodation. Do not be aggressive because they may get the idea that you're considering filing a discrimination charge and that, although it's not supposed to be, may turn out to be the kiss of death for your employment.

Hope this helps. Do this today.
 
Michelle - good luck this week. I'm thinking of you and hoping for the best.
 
HI

I do have a suggestion re the CPR. I was an Instructor for American Heart CPR before I lost the use of my hand and couldn't do it anymore. The guidelines did change this year--but you can do the majority of the class ONLINE. All simulations.

If you can manage to do ONE cycle you can pass the class. I teach all my students to press the ambu bag against their leg--with the patients head between their knees, bag against knee. U can use your arm or hand to compress it--as long as you can make the seal.

If you can clasp your hands on the chest in the correct manner--you can use your upperbody to do the compressions....believe me it's possible--I've done it--in real life and on manikins.

Anyone can challenge the AHA CPR BLS class. I used to charge $30 bucks to certify folks that did the class 'online'.
 
Sigh--no reason at ALL that should have gone to moderation. Put in some stuff that might help with your CPR
 
Well, all this time has passed. I did receive phone calls back from my employee relations rep, only to say that she was working on it. She said she hadn't heard any word from the education coordinator. This was all before May 17 (day I left for a conference) and haven't heard anything back since. Left a few messages, but I feel like I'm talking to myself. Thankfully I send about 1 email for every 2 times that I call, so I have documentation that I've been trying to get this addressed. I had rescheduled from May 3rd to May 31st, then when no word I have now rescheduled to sometime in July. My card expired in May - they all knew this - and I imagine they're all ok with it. They can cross their own fingers that no one decides to audit it in the meantime, no skin off my back right now. My manager knows and is fully supportive of whatever I feel needs to happen.

You're right Patty, at this point I'm happy if they just ask me to do 1 solid round to demonstrate skill. I can handle that. I just want assurance that I don't have to do multiple full-court-press practice runs during the 4 hour class before my test time. The hospital offers re-cert for free, so I can't really bring myself to pay out of pocket to someone who will let me just do my one demonstration. Part principle, part being broke.

I can't help but think this is how society has learned to handle an ADA request. They're likely so afraid of saying/doing the wrong thing and risking some form of legal action that they stall and conduct all their communications in private, trying to figure out the best answer. Or maybe that's my conspiracy theory talking. My employee relations rep should already be well aware that if that was something I was out for, I had my opportunity 3 years ago when a potential manager broke all kinds of HIPPA and anti-discrimination rules. But alas, I digress. I am a nurse. I am trained to be patient. Right? ;)
 
For what it's worth, thee is a slew of new 'regulations' coming out, actually started last november, on ADA. Most employers are struggling to learn and comply with them. ADA is a delicate dance from both the employee's and the employer's side. i truly believe most people don't want to sue and i believe most companies try to comply. regulations often get in the way of good intent by both parties.

i'd let sleeping dogs lie at this point. you've done your part. you've got the documentation. wipe your brow and call it a day.

nurses are special people. i worked HR in 2 hospitals for 10 years.
 
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