Can't work anymore!!!!???? (long, sorry)
 

Hi all!!

I haven't been posting much because I am soo exhausted. I feel like I might not make much sense :).

Last week I saw my neuro. Some of you might remember that I was having major issues with him at a previous appointment. He was not acting like himself, to say the least :(.

When I saw him last he was back to his old self :D, great!!!!! He gave me some news that I wasn't expecting but should've been, in retrospect.

My last relapse began at the end of November. This whole time I've been thinking that I was still in this relapse even though I have seen a lot of improvement. My cognitive abilities are truly lacking. I still walk with a cane and have to use a scooter or a wheel chair for long trips.

My job involves payroll and a lot of other duties that require me to be on top of my game. I have to decipher time sheets that are handwritten by electrical linemen. Let me tell ya, these guys are not good with keeping proper records so I have to correct and catch all of their mistakes:mad:. I can't do that anymore. I can't even catch my own mistakes:rolleyes:. I've already read through this three times to check for errors :D!

My neuro told me that he thinks I've reached a plateau in my recovery :(. I hope the Tysabri works some kind of miracle. I was really deluding myself thinking that I would be able to go back to my job. There is no part-time or flex- time available to me. I work for a utility company and am a union employee. There is no flexibility in my job. There are no positions that I can transfer to.

I've had to apply for long term disability. I know that I'm very fortunate to have it. It will cover me until I am 65 at 60% of my pay. I'm just having a hard time dealing with my mom and this at the same time.:confused:

On a bright note, I called my LTD case manager because I had some questions about the application process. She told me not to worry; she had already approved me without my application???!!:) She has MS too!! She had read through all of my records from the short term disablity claim that I have now and decided to approve me right away!:D:D

I know I should feel lucky but somehow I don't:confused::confused:. I haven't even been diagnosed for a year yet!! Too much all at once. :nopity: Wah, wah poor me, LOL. Anybody else have to stop working recently? I feel really useless right now with my mom and everything else. I'm sure I'll find ways to fill my time (volunteering, ie) but I won't be working and that really bothers me.

It was a tough decision for me, too, J. But, the reality was greater than I wanted to believe, I simply could no longer keep that pace. When I left my regular job, I was in a huge attack that lasted a very long time and I had begun to think it might not end. It did end and I was faced with what to do next. I freelanced for about 5 years after that and did pretty well with it, until the disease acted up again.

It was frightening and hard on the ego, but I stopped taking clients and got serious about fulfilling my dreams and goals. I do not regret that choice one bit, I'm very glad that I seized those opportunities when I did because most of it would be impossible for me now.

It looks to me like your next season in life is on the horizon and it will come in due course. :)

This may end up being a blessing enabling you to be with your mom more right now. I'm sure she doesn't think you are useless. Wasn't it you that made the executive decision to get her to the ER that ended in her finally getting the tests she needed and got her to the better doc?? You just have to redefine useful. Having a paying job isn't everything.

It's funny, I feel useless working. I'm so tired and out of energy that I can't function at home as a mom anymore. I feel like I could be a better mom / wife if I wasn't working. So, I guess it is all about perspective.

You will work it all out in your mind and adjust to your new reality. You may even love it. It is just the initial shock of trying to accept it. You lived through limbo for 16 years, so you must be pretty tough!

I was already semi retired (I still kept the books for my DH's business), when I had my last exacerbation that never, fully, went away. I felt very very useless, but after adjusting to my new life, I found that I could be much more involved in being a good Wife and Mother again and with encouragement from DH and Paxil;), I felt useful again.

As Cindy said, Joelle, your next season is just over the Horizon. What a great way to "Spring" forward. I hope it all works out great for you. :hug:

:hug: I know what you mean about too fast too soon. I too am looking at the pros and cons of leaving the workforce. Mainly over that fatigue thing, and I'm working part time.

Working has become the way we define ourselves as useful it seems, so leaving is a very scary idea. But if my home is semi-falling apart, what am I really working for? That's what I'm up against right now.

The others are right. There are other ways to be useful. As I've been debating this, so many have told me what a good difference it has made in their lives. So there is a silver lining.

Best of luck in the new course ahead. I really hope it works out for you. :hug:

Aw, Joelle, I'm sorry this happened! It's something that's in the back of my mind all the time, as I'm the sole support for my kids and my 87 yr old Mom.. With all the stress you've been under (and of course not feeling well on top of that), this may be just the thing to get you moving in the right direction again. I'm glad you're feeling a little better, at least, and I hope you're right about the Tysabri continuing your improvement beyond the doctor's expectations now..They don't have a crystal ball any more than we do (darn it), so this "plateau" could just be a short stopping point in your recovery. That's what I'll be praying for!Blessings,Kris

I hated making that decision as well, so I didn't really. You probably don't need to either, at least not right away.

Most disability plans have a person off on STD disability first, then LTD for the longer term. The "longer term" may be up to 24 months, depending on your policy. At 24 months, they will often do a very in-depth assessment, at which time you will need to prove you can no longer work at all; not part-time, not at ANY job, and/or not a job where you could earn even 50% of your previous wages (and hence be cut off disability payments). If you can't, then you go on "permanent LTD" . . .

Every plan is different, but it's not usually as cut and dry as you go off work and you are not required to prove "need" at some time in the future. This is especially true with the plans that pay you disability for life . . .

There will also likely be the need to apply for government disability (SSDI, or whatever it is called in the US) and this payment may be deducted from anything you recieve from your disability carrier. If there is a back-payment of this gov disability, you may need to repay this to your insurance company.

So, although this sounds very easy at the moment, there may be many "YIELD" and "STOP" signs along the way. At any point in that process, you (and your doctor) may decide that you are much better and you want to give it another shot in the workforce. Most companies have to keep your job "open" (only temporarily filled) for 24 months, so that you may step back into it if you can.

That is the way I looked at it in the beginning (there was always a "Plan A" to return to work, if possible), and it helped me to make the transition easier.

Cherie

:hug: Joelle :hug:

This is a big change for you - and you've had to deal with so many changes lately some of them not so pleasant. You enjoyed your job and the social aspect of it so it's understandable to "grieve" some for what's been taken away.

Try to look at it as a blessing in disguise. This gives you more time to devote to yourself and your family without exhausting yourself. Plus, you're SO very fortunate to be able to go on Tim's insurance. My biggest fear in having to go on LTD was the fact that I would lose my insurance. Example: I had my prescription for Provigil filled and on the receipt it said "you saved $385.09". The retail price of this miracle drug is $405.09 - I had to pay a $20 copay.

Since I have been working from home there is no telling how much $$ I have saved in gasoline, drycleaning and lunch expenses. Probably not 40% of my current income but it's a big chunk of change nonetheless. You'll see the savings, too. Plus, you won't be wearing yourself out having to get up and ready to go somewhere so early in the morning. I do not miss that one bit. I do miss the social aspect of being around my coworkers but not enough to try to go back into the office!!

Give it some time - you're emotionally and physically exhausted right now. The trip I'm sure was hard on you and the circumstances were not the best. Any change to what you're accustomed to will be difficult to deal with.

Call me anytime - you know I'm up with the chickens - I know you do because we've had some 6:30 AM conversations!!! :D:D:D

((((JOELLE))))

It appears you are upset about the loss of working, not the great benifits that the Union provides. I'm so glad you are being taken care of by your brothers and sisters! Unions are a blessing for the worker. DH is Union, as was I for 5 years(secured a pension)....it will serve you well :)

Continued prayers for your Mom and I do hope you feel better soon as well!

I'm not feeling well, since about friday, so I'm not around much...but when I saw this, I had to come out and wish you peace and give you a :hug:

:hug: Hugs to Joelle! I know this is so hard but it really could be a blessing in disguise. Your body may get better and feel better with less stress from the job. You know I am here for you girl! Anytime you need to curse like a sailor you know my number! lmao

PS: Now, don't go calling me when the chickens wake up though, unless it's an emergency. I startle when the phone rings that early! :eek:

Kitty, you got the am, I'll take the afternoon/pm. LOL :p :hug:

:hug: I'm so sorry. Life is really throwing it at you right now! I'm so sorry.

I did not read all of the posts, so I apologize if I reapeat something that is already said.

Take this time to concentrate on your mom. You will be so glad that you have this extra time with her.

I'm thinking of you and sending you lots of positive vibes!

Oh, Joelle, that's too bad! You've got so much on your plate right now, don't you? Just doesn't seem fair.

I do hope that in retrospect you'll be able to see that a door was opened for you to be able to tend to your Mom's needs, as well as your own. Hugs to you both! :hug:

Joelle, I agree with what has already been posted here, hon. I truly believe this happened at this particular time so you could be where you will be needed most, with your Mom.

I moved my Dad home on Dec 10th 2004, as he could no longer live alone. He was diagnosed Feb 2003 with lung cancer. On Dec. 12th, shortly after I got to work, I slipped on a set of newly rebuilt stairs and broke my ankle.

My Dad died on April 3rd, 2005.

If I hadn't taken that particular little slip I wouldn't have been able to be with him.

My doctor cleared me to go back to work the week after he died.

I do not think this was a coincidence. Sometimes you just have to believe.

You have the wherewithal in place to help you and I truly believe this will be a good thing for both your physical and mental health!:hug:

Hi Jeannie!

You have know idea how much I will miss the Union. I'm the grievance coodinator for our local. I miss it so much. I know without them I wouldn't have the great benefits that I have now.

I grew up in "Steel Town", the Pittsburgh area. My whole family are or were Union workers. It's a tradition;).

I hope you feel better soon:hug:!

Joelle I am sorry about your job. I went through a similar rough time last year when I had to leave a job I loved soooo much:( I mourned as if there was a death!

I loved the people I worked with and I actually looked forward to going to work every day.

My job consisted of having a very sharp mind with no room for mistakes. I just couldn't do it anymore. My fatigue was dibilitating and my mind felt like mush.

I still have the fatigue but now when I feel bad I can lay down.

It does get better with time and you will find your new normal;)

Good luck. I'm thinking about your:hug:

Joelle,
Nothing like haveing all the dirt and knowing whats going on! Of course, then there's the whiners! LOL!! So good to see you around the boards again....guess you'll be hanging here a bit more eventually...got to hang out somewhere and do damage control! :D

I love Unions!!! Has given us a good life!

:hug:

I'm sorry Joelle! I know it had to be hard, but you are NEVER useless. Like someone said, could be a blessing, more time with your Mom. It's hard when someone tells us "You cant do that anymore"!

Hugs,
:hug:

hey, Joelle...

it took me about two years to figure out that my life wasn't OVER after I stopped working.

my job was a big chunk of how I defined myself, and I really needed the gigantic boost that came with doing something well, and being well-paid for it too.

and the interactions with my staff, and my bosses... were very important to me.

an added bonus, my boss's sister is a scientist, who worked nearby at Chiron, during their development of BetaSeron (no, it didn't get me a higher LOTTERY number, ;) but still, we joked about it a lot.

most especially, I missed the camaraderie, and the closeness we all had, and the long-term friendships... as I was there for a decade.

it was a GIANT ache in my heart to leave, truly (well, except for this one snarky woman who raised her nose, and acted like I was a faker, lol, I didn't miss HER)

anyway, all I can say is, it'll take time, but you'll adjust,, and find new things to fill your mind and time... and give you the stimulation you need to keep going strong.

and you'll get the rest you need, and not be so exhausted all the time, and have more time for your mom.

after I left the workforce, my mom had a massive stroke, and I was able to move in with her for a year, and help her through all her stuff... then, she got cancer, and we did home-care hospice for her, until she passed away in 1998.

I wouldn't've been able to BE there for the wonderful woman who gave me life, if not for the MS, and my forced retirement...

so, oddly enough, it all worked out, and I was able to do what I NEEDED to do, even if I could no longer do all I WANTED to do.

does that make sense, Joelle?

I know, you asked for responses from *recent* job-leavers, and it's been 15 years since I stopped working, but... well, I just wanted to let you know, I'm here, and thinkin' about you, and hoping you get through all this smoothly, and manage to adjust to your 'new normal' with grace and panache... and you are able to smile and feel accepting of all the changes you've had to endure.

:hug:

hi joelle,

i had been nursing for 35 yrs when i had to resign my position in '05.
i remember it like it was yesterday.
my job was such a big part of my life, and my identity.
i really grieved it's loss.

but the advice shared with me was wonderful.
i came to realize that the stress of my work was making me ill.
i'm so calm now.
being retired is the best thing that ever happened to me.

please give it some time.
it will get better.

Be grateful you work for a union. You will have those benifits for a long time. Can you also apply for SSD? I am also one of those that let my job define me and it took me several years to finish my grieving of that. But God has kept me pretty busy. Both my Mom and MIL had a series of small strokes. I don't physically take care of them but they have a lot of needs that would have been very difficult onme if I had been working. Plus being a Grandma is wonderful! Actually I am healthier in retirement than I would be if I were still working. But yes, I would be making more money. But very tired. Good luck.

Dear Jo...
 

Your situation is very close to my heart right now. I like to think I'm in charge of making a decision to slow down "a lot" at work. But, in all actuality, the ms is making the decision FOR me. I've been fighting reality. I have finally turned it over to God. Things just seem to be falling into place now for my future in the workplace. It is a real test for me to be patient and accept that it is OK for me to slow down considerably... life will go on. Right now, I'm feeling pretty good about it... tomorrow I may be back to trying to take over for God. We can, at times, have a little "tug of war" going on... which I'm sure has to be aggrevating to God, if truth be told. But I'm taking baby steps in the journey of settling into the reality of it all. I try to rememer, "It is what it is" and what can I do with it to lead the best and happiest life possible? I got some really good advice from a few nice people here at NT. These folks are very genuine and smart. I am thankful for them everyday. I am also thankful for you. I wish you the best in the world. I hope things settle in for you to have a happy life. My prayers are with you and your mother. :hug:

Jo~Jo Darlin.....

Ya know you got "plenty" of other folks whom you can help out....The pay isnt in the form of $ but its in the form of :Heart:

You will find your place hun....give it time.....

and spend what time you can with your momma.....YOU WILL BE SO GLAD YOU DID.....

in the meantime use this forum as your sounding board....many here know exactly what your going through.....

You have a great irle of friends.........USE US!!!!!:hug:

Doydie,
 

[QUOTE=doydie;240644]I am also one of those that let my job define me and it took me several years to finish my grieving of that.QUOTE]

YOU HIT THE NAIL ON THE HEAD WITH THIS STATEMENT! WOW!!!:eek: OUCH! THE TRUTH HURTS!!!! THERE MUST BE MORE TO US THAN OUR CAREER! RIGHT??? YOU HAVE GIVEN ME A HUGE "AH-HA" MOMENT!
THANK YOU! :hug:

Also, UNION is great! My husband who is dealing with cancer was (always will be) a part of a brotherhood. We have gotten SO MANY checks $ from his brothers to help us out during this time! Plus, the insurance will always be there. We are truly blessed!:Blush2:

:hug: Joelle :hug:

Everyone here is right - there is much to be thankful for in being part of a Union. My DH Tim was a GM employee all his life - only job he ever had - and was very involved in the Union (Union Rep and then Chairman). They take care of their own. Even though GM itself could have been better to me it was the Union workers who helped the most when he passed away.

I hope things are looking better for you and that you are slowly but surely getting your strength back. A trip like you took would take it's toll on even the healthiest of people - give yourself some time and let Tim and your boys pull the weight. You deserve a break - let them help. Or. . . . you could get up and try to do some laundry - that might make you feel better (a suggestion my own DH gave to me once when I had the flu!!!!:eek:). :D

LOL!!!! I tried the laundry trick. It didn't work:D:D!! I ended up sleeping for 2 hours afterwards!! Husbands are sooo great when it comes to "helpful" suggestions!!:):) Mine keeps telling me not to over do it, but then in the next sentence he asks me to redo his resume, LOL. He just doesn't get it sometimes. I'm gonna redo his resume ;). Lord knows what it will look like :p:p!

Hope he proofs it before sending it out!!! :D:D:D:eek: