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Posted 3/21/2010 2:25 AM (GMT 0)
I think I'm losing my job...... cry

This is basically the same as a post I did on Chronic Pain, but I hope no one minds.....my friends from Lupus don't read the Chronic Pain posts and the CP friends don't read the Lupus posts, but I wanted to reach out to everyone about this!!

Anyway, due to my chronic illnesses and such, I was put on a 6-month contract at work where I could work at home for approximately half the time as long as I was in the office for about half the time. For the past two months I've been at home about 90% of the time....just because of pain, vertigo, etc. I've just not been able to get there.

The 6 months is now up. Has been up for a few weeks now. My supervisor's supervisor told me on the phone on Thursday that she cannot sign another 6-month extension of the same contract because "I've demonstrably proven that I can't keep my end of the bargain".

I work 1/2 time for one team and 1/2 time for another. For one team (instrument support), I can work from home all day long, and my supervisor for that team is totally happy with my work; even as ill as I've been, I've been able to do it from home. The issue is the other team, the scheduling team. To do my work for the scheduling team, I have to be physically present. My boss for scheduling is quite unhappy because the last two times I was assigned to build a schedule, I ended up both times having to hand it off to another person to finish.

I generally have to be there for at least 4 days out of 5 for a couple of weeks straight to get the work done when I'm scheduling, and the reality is that I make it for maybe two days running, then I'm exhausted and my pain level is through the roof.....then I'm toast.

SO......I have purposefully begun taking strong narcotic pain medication just in the past month; I have ordered new glasses (dark-tinted) to help with my vertical double vision (ophthalmologist believes it's due to astigmatisim) and sensitivity to light. I have done these things in an attempt to make it possible to get back to work.....but maybe it's too late!

I really wasn't sure how I felt; I thought maybe I was ready to go on disability. But now, since push has come to shove, I know that I want them to give me another chance!

BTW, when I speak of a "schedule", I mean a putting together week-long series of commands to a spacecraft and its onboard instrument. So yeah, we're talking NASA, a billion dollar mission, and all of that. Maybe they shouldn't be entrusting it to me, with my level of brain fog.....? tongue

No, REALLY, I would never endanger the spacecraft....I would go on disability first. I truly believe I can still do this!!

How do I convince them?? We have a meeting scheduled for Tuesday afternoon, 2pm. Can they force me into medical leave??

Maybe the worst thing that can happen is that they just don't renew my contract to work from home part-time. Then I have to be there everyday.

I don't know the laws regarding these things.

Thanks for any comments or input from anyone out there!
JoAnn
Posted 3/21/2010 6:50 AM (GMT 0)
P.S. I have to admit, I don't really know if I CAN do the work any more. I just want them to give me one more chance. I know the pain meds and new glasses probably won't help my fatigue/lack of energy or my vertigo problems. So why am I even fighting it? Maybe I'm just flailing away, posting stuff like this because I don't know how to let go.....?
Posted 3/21/2010 7:01 AM (GMT 0)
I am so sorry that you are going through this. Is there any way to do just the job you can do from home and give up the other one? I know that sounds extreme but it might be for the best. You need to consider all the problems involved in your work situation.
Posted 3/21/2010 7:08 AM (GMT 0)
Hi Joann, I'm sorry you have to go thru all of this. I read your post earlier and it struck a nerve with me. I wanted to respond but I wasn't sure how to say it. So I was just in the kitchen making jalopino poppers and decided what I would say. Then I came in here and read your second post which pretty much said it all.

But I'll say it again cuz I thought what I was thinking was pretty good stuff.wink

First of all there are so many people here who know what you are going through. This lousey disease chips away at us at every turn. All of the things that we know and feel secure about and make us feel good about ourself seems to start slipping away. We fight it as long as we can. We ignore how we are feeling and beleive it will go away. But it doesn't go away.

Yep hey I want to clean my house I think i'll take an extra steroid. You go like a house on fire and are so proud of yourself. Then the next day and the next day and the next day you realize you are in bed alot. You wore out all your spoons. You have nothing left.

It's called grieving. It's not for me to say if you should or shouldn't try to hold on to your job. You may talk to your doctor, husband, maybe, a phychiatrist.

It's possible that you could get a job part time. It sounds like you would have no trouble with your experience on computers. Just remember if you get a job with onstar and you have to stop a tahoe that you don't shoot the sucker into outerspace! tongue

Also if you are taking more meds to make it to work you need to talk to your doctor. The last thing you want to do is run out and be in pain. Besides your doc. needs to know that what you are on isn't doing it for you. You may be sick but you deserve the best quality of life you can have. You may not be able to go back to work there but you are still the same person and just as important as you ever were. Besides God don't mistakes and he is with you all the time.

hang in there and keep talking venting what ever it take.

let us know

hugs

carol

Posted 3/21/2010 1:02 PM (GMT 0)

Hi! Joanne,

Wow.  I am presently in a similar situation. So many of us understand much of what you are going through. I had to give up my ICU and nursing supervisor position and cut my teaching hours way down. This past school year I have been sicker than ever. And no, this disease doesn't go away, doesn't ever get much better. I gave up house cleaning a year ago, cause I had to take the prednisone just to get to and from my classroom. My computer monitor is framed in sticky notes, and I have just had to cry "UNCLE", and now I'm in the process of applying for permanent disability and ending  my career. I love my job, and I am grieving. Life is really all about balance. Lupus is all about balance. If we do this, we can't do that. If only we could order more spoons off the internet. None of us has any to spare. (Ongoing gratitude to the person who wrote "The Spoon Theory"). It has taken me over a year to come to these decisions. I made a list of what I do and what I don't. And then I looked at what is more important. It boiled down to these few things: My family or my job. My health in 20 yrs down the road, (I am 54 and have been a nurse for 34 yrs. My husband and I have been married for almost 37 yrs), or doing my job in a deteriorating way for a few more years.......Now I see it as a no brainer, but each of us has to look at our life from our direction. And make decisions for ourselves that are the best ones we can make at the time we need to make them. Hugs and encouragement your way,

suetoo

Posted 3/21/2010 1:07 PM (GMT 0)
ps. The American's with Disabilities Act does have protections for individuals built in to it, for situations like yours. It might be time for you to consult an attorney? Or a union rep attorney, to speak up for your rights, to 'have your back' so to speak?
Good luck and God bless,
suetoo
Posted 3/21/2010 7:59 PM (GMT 0)
Dear redrose, Carol, and suetoo.....thank you so much for your replies! It helps to know that there are people who understand! Suetoo, I'm sorry that you're in the same boat!

Carol, I'm so sad, I've been crying off and on for days....but you managed to make me laugh! Shooting a Tahoe into space! LOL!! smilewinkgrin

But you're right....I'm pushing myself past my limits. I'm using up all of my spoons so that I crash and burn.

I keep trying to think about all of my options, but I don't see any way out:

i) If I go down to half-time work, I get half my pay, which isn't enough to pay the bills. And I have to admit, it's been difficult to even keep up with the instrument support work sometimes, when I'm really feeling lousy. There are days when I feel like I'm looking though a kaleidoscope at the computer screen....I have to squint hard to bring things even into partial focus.

ii) If I try to continue to work full-time, I may just end up sicker than I am now, because of overextending myself....and I could get fired if I fail to do the work.

iii) If I go on disability, I'll get a minimum of 2/3 of my normal pay, and get to be home with my family. I did pay into long-term disability insurance so I'll get 2/3 pay until I'm 65, which is still a while from now (suetoo, I'm 54 as well!).

So maybe it is a no-brainer....but I'm one of these people who likes to "fix" things. I learned a while back that I couldn't fix other people, but now I'm having to learn that I'm not in control of my own life, either....that sometimes I have to let go and trust the Lord to be in control.

Right now, thinking about disability, I feel like I'm jumping out of a plane without a parachute and I have to trust Him to cushion my landing!

Please pray for a soft landing! smilewinkgrin
(((((((hugs)))))))
JoAnn
Posted 3/22/2010 3:06 AM (GMT 0)
nasalady, just a short post here, but I will try and keep you in my prayers from time to time at the times I think about my current job change as well. It helps to know that you're not alone. I'm in the process of letting go of a 10year cooking profession. It's been my job-identity since graduating. I've fought giving it up for a year or two..it's time. I gave up the army a few years back because of my epilepsy, and now the cooking's got to go. I can't take the physical toll on my body. I don't however know what I'm going to do for work to replace it. I loved my job...I'm not quite ready to go on disability though, although people keep suggesting it..I don't think that non-illness sufferers realize what it takes out of us to go on disability sometimes. We want to keep doing the things we love. I will be looking for a new job-identity in something that's not physical at all..gotta save my energy. It goes sooooooo fast. I have come to realize that I'd much rather have energy to play with my nieces and nephew on the good days, than spend it all at work. Although money is truly needed to pay the bills. I don't have the help of my husband right now. Anyways, I don't wanna go on about me, just wanted to letcha know that I'm one more of the many that have to face that aweful time of giving up what we've known as a job. And not just any job, but one that has been loved by me. I'm sorry to hear that you're looking at a very likely potential to do the same. You know how I try and look at it though? It helps me when I'm grieving over my career. Is that the same God who chose for me to have this illness, also knows my needs. And if by giving me this illness a huge need of mine being love for my job is being taken away, that he now can and will fill that need with something else that I can love just as much, if not more. I believe in a God who can do that..and he promises to fill our needs. Right now instead of working I am blessed to spend precious time with my beautiful sisters kids (I love kids), and more time with girlfriends to hang out than I can count...if God wills he'll help me and direct me to a better fit in a job, or whatever I'm supposed to be doing that matches up with my health. Anyways, enough about that. I just wanted to share what I'm encouraged by on a daily basis as I struggle with not cooking for a living anymore. When I feel sad and am praying for God to fill my needs, I'll try my best to think of you too and say a prayer for you nasalady. I feel your grief and am sharing a bit of your pain.

Take care,
Ellie
Posted 3/22/2010 5:38 AM (GMT 0)
Dear Ellie,

Thank you for your post. I'm really, really sorry that you're going through the same thing right now!

I've posted about this "fork in the road" before on Healing Well....a couple of times actually. But I've never been this close to losing my job before.

I just didn't dream that it would be so HARD to let go of my professional life. I mean, I knew intellectually that it might be tough, but when it really started to happen, it just about kicked my guts out ... emotionally speaking.

I'm still not sure what is going to happen on Tuesday, but am now trying to leave it in the Lord's Hands. He knows what's best....He sees the BIG picture, after all! :)

Thank you for your prayers....I will keep you in my prayers as well.

Take care,
JoAnn
Posted 3/22/2010 6:01 AM (GMT 0)
Nasalady,

I was thinking of posting this same topic over on the lyme forum because I am in a similar position. I work as an IT consultant and have been having an increasing difficult time doing my work due to brain fog. I'm having great difficulty concentrating and working on complex assignments that used to be easy for me. I was working as a project manager until I became sick this past summer and was hospitalized. I have never fully recovered and been reassigned to less demanding work. I'm having trouble keeping up and feel like I might be let go soon. My wife works as a teacher but losing my job will definitely change our lives. Now I'm trying to determine what kind of work I can do with this illness.

I hope that things work out for you and me and anyone else facng this challenge.
Posted 3/22/2010 12:46 PM (GMT 0)
I dont' know if it is an option but have you tried short term disabilty...that can give you three months or so to work on getting yourself back undercontrol witout worrying aboutgetting your work done. I am currently on it...tyring to give my body much needed rest. Yes, i only get 60 percent of pay so I have had to cut out of lot of things I would normally do but I think it is worth it in the long run if it can help me feel a little closer to what I used to feel like before I went down hill.
Posted 3/22/2010 5:53 PM (GMT 0)
Hey Amy,

I think that short term disability (in Canada we call it medical unemployment insurance, or med EI) is a wonderful idea.  I am currently on it..or was, as it's just come to an end.  We can get up to 15 weeks, and as of Feb 20th mine ended.  I've been off work as a cook since Oct 2009.  It's taken up till a few weeks ago to feel more like myself.  I think that a lot of that is credited to the Imuran that I just started taking a month ago.  Plaquenil just wasn't cutting it for me.  This is my second time using med EI over the years, or maybe it's the third *L* I don't quite remember...for me though, after lots of pondering, praying and talking with people, also finally accepting my limitations of energy, etc, I've come to realize that I just have to move on.  I'm with nasalady though.  I feel a HUGE loss...a void, a deep grief..I really don't know what "profession" or direction to point myself with work.  I'm really good at what I do.  I've been thinking about it this whole past many months as I"ve been recouping.  God knows what I'm supposed to do, and I'm trying to think of it as a new adventure to experience.  Otherwise it's just depressing.  I miss my work family.

'Betterhealth' sorry to hear that you're going through the same thing.  It's such a harsh reality, but one we must face.  So, Tues it is for you Joan, for a lot of answers?  I will be thinking of you especially. 

-Ellie

Posted 3/22/2010 8:24 PM (GMT 0)
Thanks betterhealth, Amy and Ellie!

Betterhealth, you should post something about what you're going through on the Lyme forum! It's so good to be able to just say what's on your heart in a post and then get supportive comments from your friends here who understand! I think it's healthy; it probably helps to keep you from exploding at home or work or wherever, when surrounded by people who really DON'T understand.

I am very sorry that you're in the same boat along with me and Ellie and so many others here....

Amy, thanks for the suggestion....actually, if I end up on "medical leave" I go immediately onto Short Term Disability for six months. After six months, if I'm approved, then the Long Term Disability kicks in. I believe that the LTD company actually helps me apply for SSDI if I need help. I could go on STD, but that would use up my leave hours (sick time and vacation) because my employer uses those hours to supplement the STD paycheck so that you still get your full, regular paycheck while on STD. But I don't have enough hours yet to stretch for the whole 6 months....I'm trying to rack up more hours.

Ellie, you sound like someone who just loves the culinary arts! Have you ever thought about trying to write a cookbook? :)

I guess I will find out on Tuesday whether or not I still have a job....maybe they will come up with a solution that will allow me to keep working! I've already suggested one possibility to my boss and my boss's boss...but I don't know if they like it.

I appreciate the positive thoughts and prayers!
((((((hugs)))))))
JoAnn
Posted 3/22/2010 11:23 PM (GMT 0)
(((( JoAnn ))))) I am still praying for you, I know you have a hard decision to make, just let God lead you in that decision. I know it's hard to do and easier said than done, just hang in there. Sometimes the road ahead looks rough until you actually get on it, God always seems to makes a way. Do you have any vacation time left you can take? Of course that may not be enough time for you to notice a difference in your health. Have you talked to your rheumy about how you've been feeling? I just think there is more the doctor can do for you, change your meds, add a new one... something, so that you have a better quality of life! Please let us know how it goes tomorrow and remember you have lots of folks praying for you! Love ya
Posted 3/23/2010 5:30 AM (GMT 0)
Thank you for your hugs, prayers, and suggestions, Stacie!

I've told all of my doctors how I'm feeling lately, and they nod their heads and take notes. I did get my rheumy to start me on the Dilaudid for pain relief, although it's not working as well as the fentanyl did. I'm struggling to type this....the words on the computer screen are blurred and doubled. I sure hope my new glasses will be ready this week!

I'd better go to bed....I will definitely let everyone know what happens tomorrow.

Love and ((((((((hugs)))))))))
JoAnn
Posted 3/24/2010 5:33 AM (GMT 0)
I promised to let everyone know....

I'm now officially on "partial disability". I didn't even know that was possible. But the people at work looked into everything and said I could work from home part-time and be on partial disability (short-term state disability) and they would use my vacation and sick leave hours to make up the difference. So I will (at least for a while) still get my regular paycheck. And get to be home!

I will mostly be working for instrument support, of course, with just a little bit of work for the scheduling team.

It all sounds great, but I don't know how I feel yet about being on disability....part of me feels like this is the beginning of the end and that they're just gently "easing" me out the door towards permanent full-time disability.

But I have to believe, that with all of the prayers going up for me today, that the Lord was in control and this is what was supposed to happen! I'm just having a hard time with acceptance.... :)

Thanks again, everyone, for your support! I do appreciate it!
((((((hugs))))))) to all!
JoAnn
Posted 3/24/2010 1:35 PM (GMT 0)
I am so glad that some kind of solution that at least allows you to work a while longer is available to you. I wish I could have dropped one or two classes instead of all 3 but to qualify for medical drop I had to completely drop out.
Posted 3/24/2010 1:37 PM (GMT 0)
Hi Joann, This is not the beginning of the end. It's just a new beginning. Actually you are very fortunate to be able to have the opportunity to just move from one to the other. I'm sure you have great benifits there. Some people (many people) just find themself with out a job. So they lose everything they know and have no income at the same time. shakehead . I'm not making light of your illness by any stretch of the imagination. Having an auto immune disease and having to adjust to a new way of life a life that you didn't plan for or want isa traumatic thing. But if you can do the same type of work while you try to adjust to the changes coming. If it helps keep your stress level down that is a good thing. stress and lupus is not a good thing.

I do beleive that God heard your prayers and is looking out for you. But that doesn't mean you shouldn't come here for support and to jump on a soap box and scream from time to time. I'm the queen of the soap box. You havn't seen a lot of me because I have been aick a lot but hopefully has the weather improves I will be here more trying to help other and looking for suport myself. (i'm a whiner)blush .

Hang in there and yes please keep up informed. If we don't know then it's hard to know how to pray for ya.

take care

carol

Posted 3/24/2010 3:14 PM (GMT 0)

Hi! Everyone,

I am always glad when I read a promise to keep you posted posttongue  Hey, JoAnn, does partial disability mean you get to throw a used VW bug into space instead of a Tahoe? It sounds like your employers really value you. I went to my first SSA informational appt. today, and they couldn't have been nicer. I found out I can't keep working once I apply, apparently per Congress, there is a salary amount that I exceeded. I am under contract until the end of June, and I couldn't live with myself if I didn't at least try to finish out the year. I have been sick with a respiratory infection since the 1st of Feb. and I am back on neb txs in the morning and at bedtime. I started getting sick again as soon as I weaned down from my emergency dose of prednisone, (45mgs for 7 days, 35 for 5, 25 for 5, 15 for 5) and now I am back on my daily 5mg, and wheezing and coughing and falling sideways again. I should be used to it by now. I am looking into a NY State retirement when I turn 55 in May. God will work this out, too. I like okie's positive point about new beginnings. And we all know some days are easier than others.

hugs,

suetoo

Posted 3/24/2010 9:26 PM (GMT 0)
Hi redrose, Carol and Suetoo...thank you for your replies, and hugs!

I know I shouldn't complain at all....this is a much better deal than most people get. Although, Carol, yes, I do appreciate being able to come here and vent! I guess I should think of this, as Carol and Suetoo said, as a new beginning....?

I think it could last about 3 months, at most, before my vacation and sick leave hours run out. What will happen then, I have no idea! Maybe I could start firing VWs and Tahoes into outer space? tongue

My boss says that I can come back to work full-time if I get a note from my doctor stating that, in his opinion, I'm healthy enough and feeling well enough to be in the office every business day for at least 2 weeks in a row. I don't know.....if my Lyme disease is more "under control" by then, will I feel substantially better? But I will still have six or seven autoimmune diseases plus DDD, so maybe not.

I just don't know what's going to happen next! It's still in His hands.....

((((((((hugs))))))))
JoAnn

P.S. Suetoo, if you're really wheezing and coughing and falling over sideways, despite prednisone, you should REALLY think about turning your class over to someone else for the duration and going home and getting better!! I know, I know, it's SO hard to let go in the middle of a semester. But your health has to come first!!
Posted 3/25/2010 4:25 AM (GMT 0)
Girlfriend you got every right in the world to feel how ever you feel. This is a tough road to go. Oh about the cars, I bet you could make a reality show out of that. It would be right up there with the punkin chunkin! Have you ever seen them suckers fly? tongue My bet on distance would be the VW.

I don't want to burst your bubble but you maybe should talk to your dr. about putting you on disability. It can take a long time to get approved. Just something to think about.

hugs

carol 

Posted 3/25/2010 4:45 AM (GMT 0)
Oh, I guess you've been talking about Tahoe's the suv's -- here I was thinking you meant the canoes. I guess I thought of a shape more customary for flying/tossing/hoisting into space!

It hurts like the devil to give up work you love...but it really does get better!

I still miss it (8 yrs later) but am very clear that I did the best thing for me. I'm sure you've done the best things for you.
Posted 3/25/2010 7:22 AM (GMT 0)
Thanks Carol and Lynnwood, I appreciate your comments....that would make one heck of a reality show, Carol! Wahoo! Except my husband says that a GM product would never make it even into Low Earth Orbit! :)

I do think I will be having discussions with my doctor(s) about disability.....I don't really want to think about it right now, but will have to soon.

(((((hugs)))))
JoAnn
Posted 3/28/2010 2:58 AM (GMT 0)
Hi JoAnn,
My heart goes out to you...Accepting the fact that I could no longer work a full-time job was one of the most difficult things I had ever faced 12 years ago. It was a long grieving process for me. However, I have worked part-time off and on since that time.

It still bothers me from time to time...just knowing I am not physically able to hold a job. I often have my brain vs. body battles and the pity parties. I now know my limits and I push them sometimes, but I end up paying for it in the long run.

I just want you to know we are all here for you and I wish you the best on whatever your decision will be in the future. Hang in there and take care. You will be in my thoughts and prayers.

Babs
Posted 3/28/2010 5:06 PM (GMT 0)

Hi! Everyone,

You know, JoAnn, thanks extra much. We think a lot alike around heresmhair I am going to talk to my principal this week, in order to give him as much notice as I can that I am not coming back in Sept. Weekends usually give me energy to get through Monday and Tues. and this whole week I am able to sit and grade papers, and put grades into the computer for report cards. Then off Friday, because it is Easter recess, thank the Lord. My next respiratory bug will be my last one gainfully employed. I have personal time for one more week of illness, and when it happens, I will apply for permanent disability, and find out what the rules are for temporary disability in NY. We also have a sick day bank to 'borrow' from. I went back to work Mar. 8th two weeks before I should have, simply because I foolishly felt I had to, the proverbial s$&* had hit the fan and I have finally realized my health and family must come first. I think it's funny how other people can judge our level of illness and function for us. Why, I look quite healthy with my steroid round face and pink blush of erythema over my nose and cheeks! and funnily enough, (do I sound whiney and bitter??) I don't look that sick!!!!!! I am more grateful than you guys know for our forum and each other to vent and complain to. I have been struggling with this decision for a year, and I am finally comfortable with knowing that this is the best decision for me now.

hugs,

suetoo

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