Having a REALLY bad day...

[CindyM]

Hello friends. Thank goodness for you all. I had 2 rotten things happened to me today and I am not a happy camper tonight!

First of all, I saw a local pulmonary doc this morning because the results of my Pulmonary function test picked up "mild" trouble expelling air. The Doc said that, IHP, this is the result of my general weakness spreading up to my chest and diaphragm. She has ordered tests to confirm her suspicion but I feel like I am very close to a DX I do not want to hear. And she is not even an ALS specialist connected with the clinic!

Then something happened at work that is making me re-think my plan to stay employed as long as possible. I got called on the carpet by my supervisor because:

I have been spending more time at medical appointments than I do at work. (True, but I am using sick and vacation time to do so. I am not stealing time from my employer and I am not behind in any of my work.)
I do not look sick. (Also true.) In fact, she pointed out, I have been seen lifting heavy objects like my printer when it needed to be moved, or climbing a small step stool to reach something off a shelf. How am I able to do these things if I am so ill? (I cannot answer this question, even for myself. Sometimes I can climb and sometimes not. Ditto for lifting a couple of pounds.)The first issue is discouraging but we will just have to wait to see how it plays out. The second issue is something that I can deal with right now. I just cannot make up my mind what my options are or how to proceed. What do the rest of you think?

Feeling blue and mad as hell,
Cindy :sad:

[PDaddy]

Wow Cindy, you need a really big hug from someone quick! I feel your pain about work issues, I have missed a bunch of days to see doctors but my office is OK so far. And, I look 100% healthy and I feel really good right now, I just have this ALS-thing on my back. You are not alone!!:|

[sharonca]

Cindy - does your office not know about ADA laws? Wow. They are really asking for it. My husband is an atty (CA) and I used to work at the office. I know this is a lawsuit waiting to happen when they act like that. Maybe she would like to walk - or not - a few steps in your shoes. A former husband of mine was told by a Social Security Judge that his case was denied because he had a tan and didn't look sick. In fact his medications made his skin darker. I wanted to mail him the death certificate just to see how he would feel.

Hope you have a better evening.

Sharonca

[CindyM]

LOL, I had thought about snapping back that she should be careful what she wishes for, since I am about 3 steps away from a DX that will, if I want, get me out of her hair for good, plus PROVE that I'm actually sick. But this is not about what she thinks. This is about me second-guessing my assumption that I would be wecome there in spite of any disabilities. If life is short, why take on a battle I don't need? I know a couple of grandbabies I could spend my time huging instead!!!

PS: thanks for the hug, Pdaddy. I need it tonight.

[CindyM]

OK. So now light dawns...My supervisor was asking me why I was late for a meeting that I did not know I was expected to attend. I went to an event, in order to be supportive of my co-workers but was about 10 minutes late due to the doctor's appointment. Plus I was upset after the appointment and needed to compose myself.

She'd been told to ask me to come help set up, which made me both unsupportive and very late! But I did not know that, as she forgot to tell me. So when she asked why I was so late, I answered honestly, not all this background stuff. And she thought my answer was designed to garner sympathy.

But that does not explain her statements that I do not look or act ill. And I still do not know what to do about my inability to keep up. Maybe working full time is not really possible for me any more. And I still cannot figure out my own capabilities, never mind explain them.

[JohnMc]

I am new to this group, and I have only been dealing with the possibliity of having ALS for a couple of months, but I wonder what to tell the people at work. I have been going to doctors often recently, and it is not always possible to schedule the Dr visits around my work schedule.

I am concerned about my employer finding out that I might have a serious illness, when I could be many months or years away from an official diagnosis.

So far, nobody has asked what is up with the Dr appointments, but I expect that the question will be asked soon. I don't like the idea of lying or being evasive, but I am concerned that if the people at work find out that I may be getting sick in the future that they may want to get rid of me.

I know that there are protections such as the ADA, but I assume that these do not apply to people who have not yet been diagnosed.

So what is other peoples' experience with the workplace before diagnosis?


John

[APC]

Hi,
We too were hesitant of letting his employer know what was going on. But after some people that he works for noticed his gait was swaying and balance off. I have to say they have been great for their understanding. My husband really wanted to continue to work. He wanted to get his 25 yrs. in . His boss fully understood and was working with him. Then he fell at work. Tripped over a rubber floor mat. He was using a cane at the time. After that HR stepped in and then we needed dr. written order of his limitations. After a couple of weeks of jumping through hoops to get HR approval, it got to be too much/stressful.
Since he's been on disability it has helped with the stress. He deeply misses the people that he worked with. Thank goodness for email. A group of guys are coming over to build a ramp for him. These people have been great. Mu husband worked as a Mechanical Engineer. works with his hands and was remodeling our home. now we are adding on to our home a master suite because all of our rooms are upstairs. I'm thankful that we are able to do this. This is giving us a chance to spend time together. I'm sorry to ramble. We are accepting his dx,but still having trouble coping at times. I mean I really can't believe we're going through this. Thanks for listening. APC

[CindyM]

Maybe there is really no best way to handle these sorts of things...I told everybody because I went through a bad patch where I was really weak and could only walk with great difficulty. So people were noticing and when my local Docs suspected ALS I was open about this. Then the clinic could not confirm the locals suspicions, so people began to think I was somehow cured. And I got used to the symptoms that stayed, even started thinking it was all a bad dream myself. I bet I announced two or three times on this board that I was about to consider myself cured. And I know I stopped talking about it both at home and at work.

So maybe I told everyone too soon? But I do not see how I could have worked the last 2 years, trying to cover up the fact that I am falling apart, although very slowly.

Based upon my experience today, I think my office is saying they want to know if they can depend upon me. We are a reactive, not a proactive place, so what they really want is someone who can step up when and if they decide to call upon you. Some days I can, some not. If I were going to ask for accommodations, it would be to know in advance what my schedule is so i could plan accordingly.

Maybe I just have to let them learn to deal with the new me.

[happy]

Cindy,

Most companies that have 50 or more employees have certain disability rights if your company falls into that category than you have the right to use them. Your supervisor does not own the company she has no right to tell you that you do not look sick enough to take the time you need for dr's. . MLOA, FMLA and ADA are protected rights for disabled by the Federal Government. You have every right to use them. Don't let anyone intimidate you. I just got back to work after 3 months of leave. After my FMLA expired I had to fill out the ADA paperwork and I did. But for me I needed to go back to work because I could not afford not to. But in any even,t I could have filed the ADA and received work accommodation's. The only ones who have a right to know about your disability is HR. they are the only one's required to know what is going on with you. Talk to your dr about the possibility of modifying your work so that you are not lifting heavy objects at work. And as far as your drs appts make them far enough in advance and take the day off get a note for the entire day if you need it, it's totally legal. Each day counts as one absence but if you take two together it still counts as one as long as they as consecutive. I hope this all made some sense?
Anyway, all this being said, stand your ground ....seasoned with grace! You have rights.

[CindyM]

I know I am lucky to have a lot of protections. I live in a state that prides itself on tolerance and I also have a strong Union. Plus if I get a DX I will be able to go out on disability with full salary, and if they annoy me any more I probably will do that. Fighting the issue takes energy, and I can think of better uses for what little energy I have.

Plus I'd have to change corporate culture. I do schedule my appointments and make my announcements of them far in advance. But they don't plan ahead, thus are not able to make use of this information and get frustrated at the person who is not around.

We've been working together since we were all young chicks and dudes. There's your clue: they are not adjusting to our aging workforce, never mind the first one to have real issues. And it is easier to cross the line when you feel that comfortable with one another.

It is not easy to think about, but maybe it is time for us to part.

[happy]

Is it your union that would allow you to go out with full pay? I need to get some of that insurance.

[tomhunter7]

Hi Cindy, Im new to this forum and am not very computer savvy. I read about your experience regarding how your supervisor is reacting to your situation and this does not surprise me. I had a supervisor (stress on the had), who was dealing with my situation in a similar fashion. I am sure you have thought of discussing the situation with your Human Resources Department, but if you have'nt already, it may be a possible solution. I was diagnosed with ALS at the age of 30, and fought to keep my job for the next 7 years. We all ended up losing our jobs when the company was acquired by another and the facility was closed.
My point is this... It's your job. You earned it and kept it and all promotions and raises. Don't let someone discourage you from succeeding.

In short, HANG TOUGH.

tomhunter7

[happy]

Speaking of bad supervisors....yesterday while I was at work, it was slammed. I think I am like you Cindy, I force myself to do a good job and maybe I do not look sick to others. Well, I had been working the "front" we have 39 ER rooms, the front is where all the codes and high acutiy patients come in. Antway, it can be very busy. I was begining to feel very tired and there was a trainee who was in the back section. When I asked my charge nurse if I could take a break I am allowed 2 per shift by law, she said, in front of everyone, I have not had a break or even a lunch , sometimes we just do not get a break. Well, I was floored. Most of the time I am there I do not get my breaks, and sometimes even lunches. I just couldn't believe she said this in front of people. I did not say anything to her I think she is very unprofessional. Thanks for letting me share. Today's a new day. :mrgreen:

[olly]

tomhunter7
the exact same thing happened to me. i tried to go back to work 3times in the first
4-5mths but i was so ill and could barely manage a week before being bedridden.
my manager told me that the area manager wanted me to resign and to put it in writing but i refused, i loved my job and thought somehow i would be able to go back. that was in the oct,by april the following year the company was taken over and alot got made redundant including myself. i think they new what was going to happen and did not want to pay me redundancy money. i am glad i did not write out a resignation.
cindym
with regards to giving up work,its all about the quality of your life outside of work.
if work is leaving you in a mess at the end of the day it is time to give up and spend your time on more important things. i stopped work early on but it was for the best.
my progression has been slow and i think alot of it is down to no stress and a quiet easy going life. i am sure if i carried on working and pushing myself i would have gone down hill faster. by the way i too usually look healthy in the face and told this ofton(dont look my 40yrs) but from the neck down my body is "buggered" as we britts say, but i guess you can't have it all lol
take care
caroline:-D

[rose]

Cindy, I think that even right now, without a complete diagnosis that you would qualify for the Family Medical Leave Act. It is something you might want to actively pursue, as it prevents employers from any discipline attached to absence from work. The industry that I work in (airline) is most likely the strictest in the country as far as absence goes and the FMLA has been a godsend for me. (as a flight attendant I am only allowed 3 absences per 12 month period without possible steps of discipline attached). I think that any employer with over a certain number of employees (50?) is required at this time to abide by the FMLA. This is not disability, I can come and go as needed. One is paid through their regular sick time until that is exhausted, and then after that either choose unpaid absence (what I chose) or to then use disability.

[CindyM]

Happy- yes- it is a benefit negotiated through my Union, not insurance. And everybody is right about the quality of life. I love my job and the people I work with but if it comes to a choice between working under tension (which is what would happen if I wanted to push the issue) then I'd be better off taking it easy.

I have decided to go to our Director, and explain that what looks like my inability to keep up is actually some other issue. Remember, the blow-up was due to the fact that I did not do something I did not know I was expected to do. This is a frequent occurrence when our supervisor is over-loaded. She forgets.

I wonder what to make of the statement that I do not look or act sick. I am not using my illness as an excuse for not getting things done. I do everything I am asked or expected to do, on time and perfectly. I even do some things in anticipation of their needing to be done, or just to help somebody on the team. I just am not there 40 hours but I am using my sick and vacation time and have plenty left to continue doing so.

Something tells me that statement about not appearing to be sick needs to be aired before management. I am not sure what she meant but my gut says do not let this one go...

[jimercat]

Cindy,

People everywhere are suffering from ignorance! My husband had an ongoing experience with the local tax office. We are allowed to reduce our property tax due to his disability. The women refused to believe my husband was sick. On the fourth trip to the tax office with the third letter from the neuro in hand, explaining in precise PLAIN english that my husband had a disease that is paralyzing and results in death, they finally waived $200 off our tax bill. WOOHOO!!! It's not the money, but the principle of the thing.

My husband is very handsome and does not look ill unless you know him. Then you would notice the atrophy in the arms and the thinning of the lips, etc... Of course when he talks, depending on the time of day, he sounds like he has had a few too many and has to explain that he has a speech problem. I don't think many believe him and it is difficult sometimes to watch as he becomes frustrated.

With all the laws in place to keep people from discriminating against the disabled, the reality is that it doesn't prevent ignorance and contempt from emanating in the world in which we live. I would imagine you would have a hard row to hoe, if you continued working under the circumstances you describe. If your disability was one that was stable (such as loss of limb), then that would be a different story and modifications could be made and everyone would be on the same page in knowing your limitations. IMHO

On the lighter side - check this site out:

"butyoudontlooksick"

This is a lady's blog about having a chronic illness and not looking like she is sick. I especially enjoyed the entries under "Sick Humor," that chronicled the advice she has been given to get better!!!

[CindyM]

Thanks, CJ. That helped me recover my sense of humor today! In my family we have a dark sense of humor so, I predict it won't be long before we change the title of this thread to something funny.

LOL I already can see the responses to "you don't look sick."

Anyone up to the challenge? Give me some quick comebacks for "Gee, you don't look sick!"

[DeeMichelle]

Cindy You help so may with your wise and kind words... First I'm sorry about your you are having chest and diaphragm problems. Do you feel a change in that area yourself Cindy?

In the States, you probably know this already, you do have an organisation called: The Invisible Disabilities Advocate http://www.invisibledisabilities.org/ida.htm
I'm from the UK so I dunno if that would be useful to you at all. You do need to make a formal response to that comment, which is routed in prejudice and ignorance. I would also keep a record of what you do do. As well as a record of any comments made by your supervisor. Speaking to the director is a good idea. No formal DX should be needed neuro and pulmonary investigations are sufficient to justify taking leave. Many disabilities/illnesses can appear invisible- maybe that's what you need to say in response to "you don't look sick." Also you don't look sick at work because you do your absolute best to look professional.

Keep your humour it's great!
Dx

[DeeMichelle]

Cindy How about you say:
"Don't I? Wow you don't look well have you been sleeping badly?" Nothing makes you feel worse when you are well is someone suggesting that you look crap!
Dx:twisted:

[kra_zquilter]

Oh, brother! So sorry, Cindy, you have to face the ignorance of those who don't work sick. I know for myself, I don't want anyone else to have to suffer because I am not feeling well. And I know I speak for many when I say it costs me a lot to spare others worries when I can't do what I used to. I've started backing off on what I do, I have to. I'm the one who is going to suffer. And I have found out when people know I can't do for them, they find somebody else! How I wish I'd learned that sooner! :mrgreen:

An answer to "you don't look sick" could be "and you won't be mistaken for someone who cares".

Elaine

[happy]

CJ,
Just curious, you said your husband has thinner lips? I have never heard this, would you explain? Is it atrophy of the facial muscles, or is it just the lips? And, did the slurred speech start first, or was the atrophy first?
Thanks,
Robin

[happy]

HA, Dx, that was a good one. How about, pardon me but you have a smudge below your eye...oh, I'm sorry that is a dark circle.
Love your devil face :twisted:

[jimercat]

Robin,

The slurred speech started first. His onset of symptoms started in his left hand and with speech difficulties. In fact that is the reason he quit working, as he was in sales. A customer actually called his boss and said he was drunk. then his co-workers began to be unable to understand him as it became later in the day. He also could no longer hold the stylus for his Palm Pilot to put enough pressure to write with it. The thinning of his lips has appeared within the last eight months or so. (he was dxd 09/06) His face is becoming a bit gaunt. So I guess, the atrophy probably began with the muscles controlling speech and the ALS slowly marched along the neuronal trail to the outer muscles. But hey! I'm no doc, so can't really say for sure! ;-)

[CindyM]

"and you won't be mistaken for someone who cares".


I love it!!! :-D

[vmd]

At work, I tell a select few individuals that I am facing a potentially fatal illness, but I also do not tell them that I suspect it is ALS. I suppose it is partly because I don't want my co-workers to think of me as the illness when they see me, instead of actually seeing "me." If it turns out to be ALS, then it's ALS. If it is ALS, then I will have to let my chairperson know. Does anyone need to know now, however?

God willing, I will continue to work as long as possible. In my case, bulbar symptoms may be more of a problem since I have to lecture to students.

[Peg B]

Hi Cindy,

This certainly speaks more of your supervisor than it does of you. I got yelled at once when I parked in the handicapped space (with the correct card showing,) "You sure don't look handicapped." I said, "Thanks, I am having a good day." I wished I had said something cleaver, but it hind sight that was OK.

But short story: Many years ago (eons?) when I was 19 I applied at the telephone Co. for a job. The interviewer, a woman,asked "Are you married?" I said. "No." She said, "Are you engaged?" I said, "No." and she said, "Well do you date?" I just looked at her and thought... I don't think you are suppose to ask that. She got carried away because of her own needs/issues. P.S. I got a better job as a waitress.:-D

Take Care and do just what is best for you. I left work two days after my first DX, and it was the very best thing for me. Take Good Care, Peg

[fiddleplayer51]

Cindy,
I imagine it's both frightening and a relief to be coming closer to a diagnosis. I wish you well during this time and with the decisions you are trying to make. May you feel the strength and courage you've so many times imparted to others in this forum.

APC,
I'm sorry for your husband's diagnosis and all the adjustments and difficulties that go along with it, it's great you have people to pitch in and help make your home a place where you can continue to live. I'm glad you can spend more time together and I also wish you well during the down times as you struggle to cope. I can't tell you how many times I've actually said out loud "I can't believe this is happening!" or "I can't believe what we're going through right now!" or "I just can't take this in. I can't believe what's happening to my husband!"
All the best to you as you carry your daily burden,
Jane

[happy]

CJ, I am sorry. I don't know what to say. I pray, that's all. God grant you both peace and strength.

[rick/Wpg]

Hey Cindy
We have not been posting for a couple weeks...been real busy.....got our house sold and got ourselves moved into a furnished apartment till our son has the renovations finished in his home next month as we will be moving in with them in Whitemouth...about an hour from Winnipeg.
Our ALS walk in Whitemouth, Manitoba is this Friday...the school there is participating in honor of a teacher there...Mrs. Lamaga...who passed away last fall from ALS. This was before I even knew I had it...weird , eh? And now we are moving there!
Anyhow...Joan and I were able to address the school assembly about ALS in preparation for the walk and had a fantastic time

We are just catching up on posts now...

I am glad you vented about your work situation....one word to describe them...insensitive jerks! oops...did I say that out loud :)

Also appreciate your humor and how you are dealing with it all......the challenges never end , do they???

You have a lot of people in your corner!
Keep us all posted as to what happens!
Rick & Joan

[CindyM]

THank you everybody for the support. It really helps. And the new living arrangements sound great, Rick and Joan. I wish everybody the best!