Roll Call Time! Do you work? What do you do for a living? How do you cope with your job?

1

Hello all,

Disability vs. Employment

I have recently begun working with a lawyer for disability, but if there's a chance I could work again, I would like to try. I think my confidence is low, or maybe I really am just THIS bad, need to give it up and go on disability. I know I can get it. But, it's not what I want.

I'm searching the wide world to find out how people with Trigeminal Neuralgia, Type II work, the nature of the work, and how you all cope. I ask you kindly, to briefly give me the run-down of what your day is like, be it at work, or at home if you cannot work.

I was so much happier working. I know the mind is all powerful, and I wonder, if I had some goals to accomplish, would endorphins kick and make my ATN improve any? I think, possibly, too much, but in December, if I'm not making enough money, I lose my house, plain and simple. Disability would not pay these bills.

So, all I ask is to know what you do, your levels of pain throughout the day, and how you cope to do it.

Your friend,

Stef

2

I don't. But I am starting once again to feel that I can. I have been selectively interviewing and have found somewhere that I believe will be good for me. I won't have to put in the 70 hour firm weeks like before, but instead this position is 35 weeks to start. This is perfect for me. I can structure the hours the way I need them. So I can start early in the morning and go in the earlier afternoon before the worst of my pain starts. I am excited about this.

Right now, I am pretty painfree with moments that sneak through.... today is one of those days that I am having some breakthrough pain. About a 3-4, can't decide. I have a meeting I can't get out of, so that is not good. But, what do you do???? So, I have a patch on my face and will leave the house with a scarf, and pull the patch off right before the meeting.

3

Lisa,

I am so HAPPY for you. It is great to hear that you've found something which will work for you! I'm excited for you!

Plus, I'm glad to hear that your pain levels are not so bad.

Let us know how it goes.

Thanks for posting!

Stef

Lisa (iamrite) said:

I don't. But I am starting once again to feel that I can. I have been selectively interviewing and have found somewhere that I believe will be good for me. I won't have to put in the 70 hour firm weeks like before, but instead this position is 35 weeks to start. This is perfect for me. I can structure the hours the way I need them. So I can start early in the morning and go in the earlier afternoon before the worst of my pain starts. I am excited about this.

Right now, I am pretty painfree with moments that sneak through.... today is one of those days that I am having some breakthrough pain. About a 3-4, can't decide. I have a meeting I can't get out of, so that is not good. But, what do you do???? So, I have a patch on my face and will leave the house with a scarf, and pull the patch off right before the meeting.

4

Funny you should post this today Stef! Like Lisa, I was an attorney at a large firm. Ultimately, however, it became apparent that I was unable to continue that kind of work. 1) It was way too many hours for me, 2) I wasn't allowed a flexible work schedule or tele-commuting - which is huge for me given my flares, and 3) I would spend the vast majority of my time in my office by myself reading and writing - which gave me no distractions from my ever-present pain. After taking two long-term medical leaves - the first for my motor cortex stimulation and complications, and the second, because I just couldn't work any more, I had to make the big decision. I ended up leaving my firm and have just started a whole new career. I knew I couldn't hold down a "normal" job, but am too career-minded to not want to work at all. I realized that I needed a job that would make me WANT to get out of bed in the morning and fight through the day. Moreso, I needed to do something that I was passionate about, or else I would just resign to being in pain and not even make the effort to continue working. So, I decided to co-found a startup business. Athough it's still tons of work, I'm my own boss and can do my work during the hours that are best for my pain. I can work from bed for all I want! And importantly, it's fun, exciting, and I get to interact with people, all of which increases my endorphins and helps with the pain :)

Coincidentally, I just decided a few days ago to start blogging about my TN2 and my new career, and published my first post today! I would love if you and anyone else on here (especially those of us who are still young enough to have to deal with working AND TN/TN2) to follow my blog and comment. I'd also be happy to respond to questions in the comments and write about specific topics if people want to know about certain things. Here's the link to my first post - hope you enjoy!

http://tiffanytherese.wordpress.com/2012/02/25/hello-world/

5

look forward to following you

6

Thanks :)

elstep said:

look forward to following you

7

Hi,

I was diagnosed with ATN two months after starting my previous job. I managed to keep my job for 4 years (until this past October). I had a very stressful job with tight deadlines, very long hours, and an hour commute each way. I made great money but it nearly killed me. The company was reorganizing and I knew I was on the "short list", so I went to HR and offered to leave if the company would not contest unemployment benefits. They agreed so I am getting unemployment for now to stay afloat.

I have been home for 4 months now. I needed this time to heal and decompress. I still hope to be home another couple of months. I know I have to do something different for a living with less hours, not deadline-driven, and close to home. Lisa, good for you finding something with 35 flexible hours! I would love to find something like that as long as it had health benefits.

When I do find another job, I want it to be something where I move around instead of sit in front of a computer all day. Moving around keeps the endorphins flowing and distracts me from the pain. I also need something that does not require great short term memory and a place to sit where there is not a lot of cold moving air. I

Here's a question I have about job interviews: When do you tell a prospective employer about your ATN? After you've been offered the job or before? I already have the disadvantage of being 58 years old, then to have this condition really puts me at a disadvantage! Good luck to both of you! Let's keep each other posted on this.

Mary

8

Mary,

You are not required to offer personal medical information to a prospective employer and they, by law, are not allowed to ask.



Mary L said:

Here's a question I have about job interviews: When do you tell a prospective employer about your ATN? After you've been offered the job or before? I already have the disadvantage of being 58 years old, then to have this condition really puts me at a disadvantage! Good luck to both of you! Let's keep each other posted on this.

Mary

9

Thanks Gloria! Tiffany, good for you! My husband was in construction sales when the new house builds started drying up about 6 years ago. He started his own plumbing business and has never regretted it. He works a tremendous amount of hours but he loves it. He says that he would NEVER work this hard for someone else! While I've been home, I've put his piles of bills, deposit slips and invoices on the computer and now I do the invoicing and all the back end things that he was never able to get to. It's great to work around watching Dr. Phil and doing a workout each day :) I will definitely follow your blog!

10

I have been out of work for a little over a year now. My amazing boyfriend supports me, my mom also helps out from time to time. I didn't do anything that was stressful, I worked at a Petco. It was an amicable split, they understood my medical issues, I understood I couldn't call in sick and leave them short staffed. I keep in touch with the managers there, I know I have the option of going back once I get everything under control, if that ever happens.

Even with feeling like crap most of the time, I would like to try going back to work, and I feel horrible for leaving my boyfriend to pay everything on a home WE bought together. Sitting around the house all the time makes me pretty bummed out too.

I was recently enrolled in a Vocational Rehabilitation program here, I hope that working with them I can find a job that can accommodate me. Even if it's just a few hours a week. It's a really scary ordeal. I worry about being hired somewhere, and not being able to do it. Letting them down, my boyfriend down, and myself again.

I also want to go to college, I have no idea how I will pull that off yet. I have a few years to figure that out though, I won't have money to go until my enrollment at my Dad's reservation goes through. So I try not to worry about that.

My counselor had me go to a resource group here to start the process of applying for disability. I feel that if I do have to go on disability that that's almost like admitting defeat. I know it's not. It's just, I never even thought it would be anything I'd ever have to do in my life.

So...everything is pretty much all up in the air right now...and it sucks.


Forgot to add in how the pain as been..Since the neuro put me at 1200 tegretol and added baclofen the shocks have been better. Still always have the ache, some days way worse then others. I currently have a sinus and ear infection, I don't know if that can directly effect the TN, or if it's just so much stuff going on in my head that is making it so crappy. At this point I am pretty much just glad that all my meds make me sleep a lot, so I can escape that way.

11

Thanks Mary!

Mary L said:

Thanks Gloria! Tiffany, good for you! My husband was in construction sales when the new house builds started drying up about 6 years ago. He started his own plumbing business and has never regretted it. He works a tremendous amount of hours but he loves it. He says that he would NEVER work this hard for someone else! While I've been home, I've put his piles of bills, deposit slips and invoices on the computer and now I do the invoicing and all the back end things that he was never able to get to. It's great to work around watching Dr. Phil and doing a workout each day :) I will definitely follow your blog!

12

Hi Stef...as luck has it I run my own company.....Charmercharts....I deliver technical reports of worldwide stock markets...bond markets...and FX markets...I also trade with a Swiss Hedge fund.....Now I work from home..I have an office in Gibralter....but found the journey a bit much especially in the last year...so I only go in now for important meetings...I am lucky ...I have a great team around me.....and in this world of the internet and Skype I can manage very well working from home.....I usually start at 4am till about 10pm at night.....Now obviously I am not sitting at the computer all this time....I used to....but find I need to break every few hours now and walk around the garden...or have a swim....or just go to the beach for an hour or so.....The Iphone keeps me in contact with the team when I go off...but usually I make sure the times I disappear are quiet times...when I know the market is less likely to kick off...I also make sure Im not more than 15 mins from home...just in case something dire happens.....I have done this job for 30 years now.....working in various banks.....so I have loads of experience....I have to be honest though and say...If I was still working 14 to 16 hrs a day in a bank in the city I would not have been able to cope.....I started Charmercharts back in 1996 and now we are a team of 6.....so I can lie down if needs be.....God knows what would have happened if I had been employed..... It would have been so hard....and I would have had to stay in UK because I worked in Canary Wharf...Iv also worked in New York and Chicago....both I loved....but I went down to Spain in 2007 and built up this team.....Im one of the lucky ones.....I can do my job...at my house.....and work as much as I can......Hopefully I can retire in 5 years ha!!

13

Carol I just read an interview you gave, explaining how you became known as C harmer! How you gave as good as you got in the financial world, whilst being a single parent. You have achieved all that you will handle this x

14

I have 2 jobs and turned down a 3rd a few weeks ago when this flared up as I honestly couldn't imagine trying to smile and learn a new job at this point. I fluctuate daily between thinking "I can do this ... the medication will work and I will go into remission" to "I just can't cope anymore ... the pain will only worsen with time and medication will stop working" and my emotions as well as my daily pain levels are all over the place.

One of my jobs is a clerical position working in the Health Records dept. of my local hospital. I told my boss last week that I could no longer take any shifts until I dealt with a health condition. I didn't tell her what I was dealing with but I needed to start Tegretol and didn't know how I would function on this medication. There is stress in this workplace and at the moment I am unable to cope with it. Time will tell if I will be able to go back to that job.

My other job is in a doctors office. It's only 2-3 days a week and I just started it about a month ago. I really hope to keep this job as the surroundings are positive and work gives me a reason to get up in the morning, a sense of purpose and helps keep depression away.

Hope you find something that works for you.

15

Thank you elstep...although I must say that I never had any health problems way back then...It was hard...but something I loved...and it has stood me in good stead to now be able to work from home.....Id rather take on 100 male chauvinist dealers from the 1980's than this TN1 and TN2 tho...they seem like pussycats compared to this...and ...I could leave them at work and only deal with them 16 hrs a day...ha!! ...I read that peice about Jorges mum....thank you so much for finding it...I may well have had this nerve cut...as there is still no feeling in my face and head...but a deep deep earache......so maybe not...I guess I wont know until I get the Drs notes from the hospital xxx

16

This is extremely interesting. I hope I get more replies here.

Nancy, wow, I wish I could find something part-time, at first, just to see how I handle being back in the workplace. It does give one a sense of wellbeing, I think.

Carol, whew . . . looks like you dodged a bullet! Good for you! You're on the other side of "arriving", and now you just have to continue what you're doing and keep your pain levels in check. Great!

17

Lisa, I'm so proud of you! You are rowing with the punches, and it looks like you've found something which will work for you right now. I'm getting ideas. Thank you for writing. I hope many respond to this thread.

Thanks so much.

Lisa (iamrite) said:

I don't. But I am starting once again to feel that I can. I have been selectively interviewing and have found somewhere that I believe will be good for me. I won't have to put in the 70 hour firm weeks like before, but instead this position is 35 weeks to start. This is perfect for me. I can structure the hours the way I need them. So I can start early in the morning and go in the earlier afternoon before the worst of my pain starts. I am excited about this.

Right now, I am pretty painfree with moments that sneak through.... today is one of those days that I am having some breakthrough pain. About a 3-4, can't decide. I have a meeting I can't get out of, so that is not good. But, what do you do???? So, I have a patch on my face and will leave the house with a scarf, and pull the patch off right before the meeting.

18

Dear, Tiffany.

Yes, I read a whole article, I think it was on TNA, about your courageous fight, and I applaud you.

It seems to me that a pattern is emerging. Those who still work must work reduced hours, or from home.

All of this is very interesting. I hope to hear from many. I want to know how others manage. I have to try something!

Thanks for answering!



Tiffany S. said:

Funny you should post this today Stef! Like Lisa, I was an attorney at a large firm. Ultimately, however, it became apparent that I was unable to continue that kind of work. 1) It was way too many hours for me, 2) I wasn't allowed a flexible work schedule or tele-commuting - which is huge for me given my flares, and 3) I would spend the vast majority of my time in my office by myself reading and writing - which gave me no distractions from my ever-present pain. After taking two long-term medical leaves - the first for my motor cortex stimulation and complications, and the second, because I just couldn't work any more, I had to make the big decision. I ended up leaving my firm and have just started a whole new career. I knew I couldn't hold down a "normal" job, but am too career-minded to not want to work at all. I realized that I needed a job that would make me WANT to get out of bed in the morning and fight through the day. Moreso, I needed to do something that I was passionate about, or else I would just resign to being in pain and not even make the effort to continue working. So, I decided to co-found a startup business. Athough it's still tons of work, I'm my own boss and can do my work during the hours that are best for my pain. I can work from bed for all I want! And importantly, it's fun, exciting, and I get to interact with people, all of which increases my endorphins and helps with the pain :)

Coincidentally, I just decided a few days ago to start blogging about my TN2 and my new career, and published my first post today! I would love if you and anyone else on here (especially those of us who are still young enough to have to deal with working AND TN/TN2) to follow my blog and comment. I'd also be happy to respond to questions in the comments and write about specific topics if people want to know about certain things. Here's the link to my first post - hope you enjoy!

http://tiffanytherese.wordpress.com/2012/02/25/hello-world/

19

Uri,

I'm glad that you have the option to go back, and having the courage and mind-set that you are poised to get the pain under control and maybe return is very good! I think attitude is very important. I've let depression get the best of me and it's time I stopped.

I'm also glad that you have a great guy, it sounds like. I have one too. I hope that my disease does not split us up, truly. He hasn't the means to support me, but I think he may if he had to. He's moving up in the world, where I used to be. It's sort of hard to watch him succeed. I'm happy for him, don't get me wrong, but it's hard, because I think, "that was me at one time".

Best wishes for getting your pain under control and getting on with life. You are so young, like Tiffany is. Heck, I feel too young to be grounded with this and I'll be 40 this summer!

I know you're bummed sitting around the house all of the time. I am too. I wonder if it causes the pain to be worse sometimes now, because I think about it more.

Uri said:

I have been out of work for a little over a year now. My amazing boyfriend supports me, my mom also helps out from time to time. I didn't do anything that was stressful, I worked at a Petco. It was an amicable split, they understood my medical issues, I understood I couldn't call in sick and leave them short staffed. I keep in touch with the managers there, I know I have the option of going back once I get everything under control, if that ever happens.

Even with feeling like crap most of the time, I would like to try going back to work, and I feel horrible for leaving my boyfriend to pay everything on a home WE bought together. Sitting around the house all the time makes me pretty bummed out too.

I was recently enrolled in a Vocational Rehabilitation program here, I hope that working with them I can find a job that can accommodate me. Even if it's just a few hours a week. It's a really scary ordeal. I worry about being hired somewhere, and not being able to do it. Letting them down, my boyfriend down, and myself again.

I also want to go to college, I have no idea how I will pull that off yet. I have a few years to figure that out though, I won't have money to go until my enrollment at my Dad's reservation goes through. So I try not to worry about that.

My counselor had me go to a resource group here to start the process of applying for disability. I feel that if I do have to go on disability that that's almost like admitting defeat. I know it's not. It's just, I never even thought it would be anything I'd ever have to do in my life.

So...everything is pretty much all up in the air right now...and it sucks.


Forgot to add in how the pain as been..Since the neuro put me at 1200 tegretol and added baclofen the shocks have been better. Still always have the ache, some days way worse then others. I currently have a sinus and ear infection, I don't know if that can directly effect the TN, or if it's just so much stuff going on in my head that is making it so crappy. At this point I am pretty much just glad that all my meds make me sleep a lot, so I can escape that way.

20

Mary,

That was a good move, cagey, actually, about the unemployment.

Thank you for replying. I need to know how a lot of people handle this. As I said, it looks like many take reduced hours, or find some way to work from home. But, you had a great game plan from the get-go.

Yes, keep one another posted, let us do that!

Thank you for replying. I'm thankful that you took your time to give me feedback. Knowing what others are doing is fueling my imagination with ideas of what I may STILL be able to do.

Wishing you a no or low pain day, and a way to return to a job which is more flexible and closer to home for you.

Best of luck, sincerely, friend.

Mary L said:

Hi,

I was diagnosed with ATN two months after starting my previous job. I managed to keep my job for 4 years (until this past October). I had a very stressful job with tight deadlines, very long hours, and an hour commute each way. I made great money but it nearly killed me. The company was reorganizing and I knew I was on the "short list", so I went to HR and offered to leave if the company would not contest unemployment benefits. They agreed so I am getting unemployment for now to stay afloat.

I have been home for 4 months now. I needed this time to heal and decompress. I still hope to be home another couple of months. I know I have to do something different for a living with less hours, not deadline-driven, and close to home. Lisa, good for you finding something with 35 flexible hours! I would love to find something like that as long as it had health benefits.

When I do find another job, I want it to be something where I move around instead of sit in front of a computer all day. Moving around keeps the endorphins flowing and distracts me from the pain. I also need something that does not require great short term memory and a place to sit where there is not a lot of cold moving air. I

Here's a question I have about job interviews: When do you tell a prospective employer about your ATN? After you've been offered the job or before? I already have the disadvantage of being 58 years old, then to have this condition really puts me at a disadvantage! Good luck to both of you! Let's keep each other posted on this.

Mary