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 , 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. I can't do that anymore. I can't even catch my own mistakes. I've already read through this three times to check for errors !

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.

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!

I know I should feel lucky but somehow I don't. I haven't even been diagnosed for a year yet!! Too much all at once. 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.

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

I agree with AfterMyNap. Change is scary. And this is a major life change. But you have all of us We're here for you.

Joelle

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!!!

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.