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

61

Hi Stef,

I work as an executive assistant for the CEO of a credit union with 8 branches. I love this job, as I loved all of my jobs. This one is special. I do everything I can to keep my place there. I've been there for 9 months, and am quickly burning up my vacation/sick days with doc appts, days when I can't function from pain. I get in early, I stay a little late, and I am committed to being the best exec sec I can be....with TN.

My pain increases as the day progresses. I bring a collection of meds to help me through. Have to choose carefully and consider timing, as most of my meds make me a spaced out fruitbasket. The most frequent thing that runs through my mind when I feel I can't take another minute is....I will be home in (x) number of hours. I can behave like a neanderthal, medicate myself properly and take care of myself and try to get through the night. I will get enough sleep so I can be more alert. When the pain comes, I will conceal it if it's minor; if it's major I will discuss with my boss. I keep her abreast of my appts, my ups and downs, my symptoms, and my embarrassment at having to put this info on her. When I'm functional, I am all over everything. Every detail, nuance, who needs what & when and how. I have a face though that shows every shock, twinge, sharp jag. I tell my co-workers that I sustained nerve damage during a dental procedure, and now I have to take very hard meds to control the resultant pain. I tell them that if I ever behave in a way that seems uncharacteristic of me, that I encourage them to bring it to my attention so I can adjust the look on my face (cringing, snarling). I use humor to make them comfortable enough to give me feedback so I can make small changes like softening my face, smiling more, withdrawing less.

my hand is constantly attached to my face, pressing on the area of nerve pain. I apologize immediately if I get impatient and adjust my mindset. I show them the meds I have to take, explaining each one, and the side effects. I tell them that it hurts a great deal, but I am committed to do an excellent job and try my very best. If I didn't do these things, I can't imagine what they would think about my strange behavior.

When I'm nauseated from pain, I throw up in the bathroom, clean up and go on. When I have high level pain I choose projects that I can do with some privacy so as not to upset other co-workers.

What, makes me feel worse is having to make that call saying I won't be in today. It happens. I believe I have the right combination of good, authentic people who are very caring but practical, and want me to success. They know how happy I am to be there and that I try with everything I have. Although I feel like I have half the talent I had years ago, I still can kick some administrative ass. I use tasklists so the smallest most insignificant item don't fall through. I don't just let things happen, I'm eyes & ears soaking up every situation I can assist with proactively. I've had to take hydrocodone at work for outrageous pain, but I chip away at it with small bites, frequently with water, until I find the magic number that can keep me going. For a monthly boardmeeting, I forego neurontin so I can have some clarity while taking minutes, but then rush home and Rx as fast as I can. I've fallen asleep in the restroom, dazed out of my mind and woozy. Coffee and tea keep me going on those days.

At home, I am a neanderthal. I shuffle, focus on dumb things, think (neurontin gives me run-away train thoughts that can go for hours). Only when i feel confident do I go out, do my laundry, buy some food and gas, then return home where I can be my TN self. I take very good care of my cat, she's a focal point and gets attention, food, gets brushed, petted, etc. For myself though, I take little care. I iron my clothes 4 work, but my hair looks like a 4th of July firecracker show and I can't be bothered with it. Fortunately they think it's intentional and trendy. I sound very lazy but I'm not. I'm not able to do regular things a lot of the time. Housework happens once a week and I time it around my level of pain. If the pain is relentless, the housework can wait.

I constantly cancel plans with friends or dates because I felt ok when the plans were set, but then had an attack and can't go. I explain it and hope they understand. Some really do. People want to help, just like you would find yourself looking for ways to help someone. This is my life. My daughter is in Calif at SDSU. I'm completely alone here and I think it's so I can learn to master this and help others. My fondest wish would be to be able to study neurology and TN, and as a patient myself, be the the TN doctor that really, truly gets it and has the resources and intelligence/training to change people's lives. But I'm 48 this year...could it be done?

62



Colleen said:

Hi Stef,

I work as an executive assistant for the CEO of a credit union with 8 branches. I love this job, as I loved all of my jobs. This one is special. I do everything I can to keep my place there. I've been there for 9 months, and am quickly burning up my vacation/sick days with doc appts, days when I can't function from pain. I get in early, I stay a little late, and I am committed to being the best exec sec I can be....with TN.

My pain increases as the day progresses. I bring a collection of meds to help me through. Have to choose carefully and consider timing, as most of my meds make me a spaced out fruitbasket. The most frequent thing that runs through my mind when I feel I can't take another minute is....I will be home in (x) number of hours. I can behave like a neanderthal, medicate myself properly and take care of myself and try to get through the night. I will get enough sleep so I can be more alert. When the pain comes, I will conceal it if it's minor; if it's major I will discuss with my boss. I keep her abreast of my appts, my ups and downs, my symptoms, and my embarrassment at having to put this info on her. When I'm functional, I am all over everything. Every detail, nuance, who needs what & when and how. I have a face though that shows every shock, twinge, sharp jag. I tell my co-workers that I sustained nerve damage during a dental procedure, and now I have to take very hard meds to control the resultant pain. I tell them that if I ever behave in a way that seems uncharacteristic of me, that I encourage them to bring it to my attention so I can adjust the look on my face (cringing, snarling). I use humor to make them comfortable enough to give me feedback so I can make small changes like softening my face, smiling more, withdrawing less.

my hand is constantly attached to my face, pressing on the area of nerve pain. I apologize immediately if I get impatient and adjust my mindset. I show them the meds I have to take, explaining each one, and the side effects. I tell them that it hurts a great deal, but I am committed to do an excellent job and try my very best. If I didn't do these things, I can't imagine what they would think about my strange behavior.

When I'm nauseated from pain, I throw up in the bathroom, clean up and go on. When I have high level pain I choose projects that I can do with some privacy so as not to upset other co-workers.

What, makes me feel worse is having to make that call saying I won't be in today. It happens. I believe I have the right combination of good, authentic people who are very caring but practical, and want me to success. They know how happy I am to be there and that I try with everything I have. Although I feel like I have half the talent I had years ago, I still can kick some administrative ass. I use tasklists so the smallest most insignificant item don't fall through. I don't just let things happen, I'm eyes & ears soaking up every situation I can assist with proactively. I've had to take hydrocodone at work for outrageous pain, but I chip away at it with small bites, frequently with water, until I find the magic number that can keep me going. For a monthly boardmeeting, I forego neurontin so I can have some clarity while taking minutes, but then rush home and Rx as fast as I can. I've fallen asleep in the restroom, dazed out of my mind and woozy. Coffee and tea keep me going on those days.

At home, I am a neanderthal. I shuffle, focus on dumb things, think (neurontin gives me run-away train thoughts that can go for hours). Only when i feel confident do I go out, do my laundry, buy some food and gas, then return home where I can be my TN self. I take very good care of my cat, she's a focal point and gets attention, food, gets brushed, petted, etc. For myself though, I take little care. I iron my clothes 4 work, but my hair looks like a 4th of July firecracker show and I can't be bothered with it. Fortunately they think it's intentional and trendy. I sound very lazy but I'm not. I'm not able to do regular things a lot of the time. Housework happens once a week and I time it around my level of pain. If the pain is relentless, the housework can wait.

I constantly cancel plans with friends or dates because I felt ok when the plans were set, but then had an attack and can't go. I explain it and hope they understand. Some really do. People want to help, just like you would find yourself looking for ways to help someone. This is my life. My daughter is in Calif at SDSU. I'm completely alone here and I think it's so I can learn to master this and help others. My fondest wish would be to be able to study neurology and TN, and as a patient myself, be the the TN doctor that really, truly gets it and has the resources and intelligence/training to change people's lives. But I'm 48 this year...could it be done?

63



Carol Harmer said....

Yes you can do it...You can do whatever you want...I am so lucky I can do my job from home....but you sound capable and courageous...and I believe everyone who deals with this awful disease and holds down a job needs to be applauded...

No one knows how we suffer....in silence ....most of the time....and my job is also highly pressurised....I run my own company ...trading ...and selling advice ...of the major financial markets in the world....so its 17 hrs a day...full on...but what choices do we have.....Im lucky....I knew my job inside out for 25 years before I got this terrible thing...again through the dentist....so I know exactly what you are going through....

Keep at it...take your meds when required....scream...howl when you get home.....and enter oblivion through the meds when you are alone....How many times have I done that....Iv lost count.....

Im getting married Sept 15th....all the preparations have been done. Iv managed to arrange all...Now I wonder ...what if the pain is so bad I cant make it through the ceremoney.....reception...etc..what if my guests think Im a miserable cow.....90% have no idea what I have....so like you I hide it...

Your work collegues sound great tho...so as long as you can make it my friend....you just battle on....why should this disease beat any of us....we are stronger than that.....we will fight it to the death.....and thats how you carry on...I dont make plans anymore...well except my wedding ......but I accept any invites...and just say I will try and make it...Im non commital....

You are doing great....carry on with what you are doing...and dont let this beat you...xxx



Colleen said:

Hi Stef,

I work as an executive assistant for the CEO of a credit union with 8 branches. I love this job, as I loved all of my jobs. This one is special. I do everything I can to keep my place there. I've been there for 9 months, and am quickly burning up my vacation/sick days with doc appts, days when I can't function from pain. I get in early, I stay a little late, and I am committed to being the best exec sec I can be....with TN.

My pain increases as the day progresses. I bring a collection of meds to help me through. Have to choose carefully and consider timing, as most of my meds make me a spaced out fruitbasket. The most frequent thing that runs through my mind when I feel I can't take another minute is....I will be home in (x) number of hours. I can behave like a neanderthal, medicate myself properly and take care of myself and try to get through the night. I will get enough sleep so I can be more alert. When the pain comes, I will conceal it if it's minor; if it's major I will discuss with my boss. I keep her abreast of my appts, my ups and downs, my symptoms, and my embarrassment at having to put this info on her. When I'm functional, I am all over everything. Every detail, nuance, who needs what & when and how. I have a face though that shows every shock, twinge, sharp jag. I tell my co-workers that I sustained nerve damage during a dental procedure, and now I have to take very hard meds to control the resultant pain. I tell them that if I ever behave in a way that seems uncharacteristic of me, that I encourage them to bring it to my attention so I can adjust the look on my face (cringing, snarling). I use humor to make them comfortable enough to give me feedback so I can make small changes like softening my face, smiling more, withdrawing less.

my hand is constantly attached to my face, pressing on the area of nerve pain. I apologize immediately if I get impatient and adjust my mindset. I show them the meds I have to take, explaining each one, and the side effects. I tell them that it hurts a great deal, but I am committed to do an excellent job and try my very best. If I didn't do these things, I can't imagine what they would think about my strange behavior.

When I'm nauseated from pain, I throw up in the bathroom, clean up and go on. When I have high level pain I choose projects that I can do with some privacy so as not to upset other co-workers.

What, makes me feel worse is having to make that call saying I won't be in today. It happens. I believe I have the right combination of good, authentic people who are very caring but practical, and want me to success. They know how happy I am to be there and that I try with everything I have. Although I feel like I have half the talent I had years ago, I still can kick some administrative ass. I use tasklists so the smallest most insignificant item don't fall through. I don't just let things happen, I'm eyes & ears soaking up every situation I can assist with proactively. I've had to take hydrocodone at work for outrageous pain, but I chip away at it with small bites, frequently with water, until I find the magic number that can keep me going. For a monthly boardmeeting, I forego neurontin so I can have some clarity while taking minutes, but then rush home and Rx as fast as I can. I've fallen asleep in the restroom, dazed out of my mind and woozy. Coffee and tea keep me going on those days.

At home, I am a neanderthal. I shuffle, focus on dumb things, think (neurontin gives me run-away train thoughts that can go for hours). Only when i feel confident do I go out, do my laundry, buy some food and gas, then return home where I can be my TN self. I take very good care of my cat, she's a focal point and gets attention, food, gets brushed, petted, etc. For myself though, I take little care. I iron my clothes 4 work, but my hair looks like a 4th of July firecracker show and I can't be bothered with it. Fortunately they think it's intentional and trendy. I sound very lazy but I'm not. I'm not able to do regular things a lot of the time. Housework happens once a week and I time it around my level of pain. If the pain is relentless, the housework can wait.

I constantly cancel plans with friends or dates because I felt ok when the plans were set, but then had an attack and can't go. I explain it and hope they understand. Some really do. People want to help, just like you would find yourself looking for ways to help someone. This is my life. My daughter is in Calif at SDSU. I'm completely alone here and I think it's so I can learn to master this and help others. My fondest wish would be to be able to study neurology and TN, and as a patient myself, be the the TN doctor that really, truly gets it and has the resources and intelligence/training to change people's lives. But I'm 48 this year...could it be done?

64

Hi Carol,

Congratulation!! Do not think too much , just be a happy bride. Do what you can do and be blessed.

Best wishes.

65

No sadly my pain is too bad i.would do.anything to go back

66

Stef,

Great roll call discussion point. I also have chronic migraines. So when I was around 39 I went out on short term disability then long term disability for my chronic migraines. I got it with soc sec on the first try. I have had Migraines since I was 9 and it went into chronic after my last position in my career it was way too stressful and dishonest/ currupt. I couldn't take it anymore. Everything worked out with soc.sec. but not the LTD insurance that I had with the company. I had to get a lawyer for that it was madness. But as for soc. sec. disability no prob. I was diagnosed with TN2 two years after my Chronic Migraines. So I was already set up with soc.sec.. Hope that helps. Monica

67

Colleen,

Thanks for sharing your story.

I feel the same way about wanting to help others. My Neurologist always pushes me and say I should take over for him some day when he retires. I would love to analyze this health condition TN and try to resolve it. There has to be a better way. Isn't there a specific part of the brain that creates the pain in the face. Why can't we find that spot? I am 47 and would love to learn about it and come up with something that works better for all of us.

Carol Harmer said:



Carol Harmer said....

Yes you can do it...You can do whatever you want...I am so lucky I can do my job from home....but you sound capable and courageous...and I believe everyone who deals with this awful disease and holds down a job needs to be applauded...

No one knows how we suffer....in silence ....most of the time....and my job is also highly pressurised....I run my own company ...trading ...and selling advice ...of the major financial markets in the world....so its 17 hrs a day...full on...but what choices do we have.....Im lucky....I knew my job inside out for 25 years before I got this terrible thing...again through the dentist....so I know exactly what you are going through....

Keep at it...take your meds when required....scream...howl when you get home.....and enter oblivion through the meds when you are alone....How many times have I done that....Iv lost count.....

Im getting married Sept 15th....all the preparations have been done. Iv managed to arrange all...Now I wonder ...what if the pain is so bad I cant make it through the ceremoney.....reception...etc..what if my guests think Im a miserable cow.....90% have no idea what I have....so like you I hide it...

Your work collegues sound great tho...so as long as you can make it my friend....you just battle on....why should this disease beat any of us....we are stronger than that.....we will fight it to the death.....and thats how you carry on...I dont make plans anymore...well except my wedding ......but I accept any invites...and just say I will try and make it...Im non commital....

You are doing great....carry on with what you are doing...and dont let this beat you...xxx



Colleen said:

Hi Stef,

I work as an executive assistant for the CEO of a credit union with 8 branches. I love this job, as I loved all of my jobs. This one is special. I do everything I can to keep my place there. I've been there for 9 months, and am quickly burning up my vacation/sick days with doc appts, days when I can't function from pain. I get in early, I stay a little late, and I am committed to being the best exec sec I can be....with TN.

My pain increases as the day progresses. I bring a collection of meds to help me through. Have to choose carefully and consider timing, as most of my meds make me a spaced out fruitbasket. The most frequent thing that runs through my mind when I feel I can't take another minute is....I will be home in (x) number of hours. I can behave like a neanderthal, medicate myself properly and take care of myself and try to get through the night. I will get enough sleep so I can be more alert. When the pain comes, I will conceal it if it's minor; if it's major I will discuss with my boss. I keep her abreast of my appts, my ups and downs, my symptoms, and my embarrassment at having to put this info on her. When I'm functional, I am all over everything. Every detail, nuance, who needs what & when and how. I have a face though that shows every shock, twinge, sharp jag. I tell my co-workers that I sustained nerve damage during a dental procedure, and now I have to take very hard meds to control the resultant pain. I tell them that if I ever behave in a way that seems uncharacteristic of me, that I encourage them to bring it to my attention so I can adjust the look on my face (cringing, snarling). I use humor to make them comfortable enough to give me feedback so I can make small changes like softening my face, smiling more, withdrawing less.

my hand is constantly attached to my face, pressing on the area of nerve pain. I apologize immediately if I get impatient and adjust my mindset. I show them the meds I have to take, explaining each one, and the side effects. I tell them that it hurts a great deal, but I am committed to do an excellent job and try my very best. If I didn't do these things, I can't imagine what they would think about my strange behavior.

When I'm nauseated from pain, I throw up in the bathroom, clean up and go on. When I have high level pain I choose projects that I can do with some privacy so as not to upset other co-workers.

What, makes me feel worse is having to make that call saying I won't be in today. It happens. I believe I have the right combination of good, authentic people who are very caring but practical, and want me to success. They know how happy I am to be there and that I try with everything I have. Although I feel like I have half the talent I had years ago, I still can kick some administrative ass. I use tasklists so the smallest most insignificant item don't fall through. I don't just let things happen, I'm eyes & ears soaking up every situation I can assist with proactively. I've had to take hydrocodone at work for outrageous pain, but I chip away at it with small bites, frequently with water, until I find the magic number that can keep me going. For a monthly boardmeeting, I forego neurontin so I can have some clarity while taking minutes, but then rush home and Rx as fast as I can. I've fallen asleep in the restroom, dazed out of my mind and woozy. Coffee and tea keep me going on those days.

At home, I am a neanderthal. I shuffle, focus on dumb things, think (neurontin gives me run-away train thoughts that can go for hours). Only when i feel confident do I go out, do my laundry, buy some food and gas, then return home where I can be my TN self. I take very good care of my cat, she's a focal point and gets attention, food, gets brushed, petted, etc. For myself though, I take little care. I iron my clothes 4 work, but my hair looks like a 4th of July firecracker show and I can't be bothered with it. Fortunately they think it's intentional and trendy. I sound very lazy but I'm not. I'm not able to do regular things a lot of the time. Housework happens once a week and I time it around my level of pain. If the pain is relentless, the housework can wait.

I constantly cancel plans with friends or dates because I felt ok when the plans were set, but then had an attack and can't go. I explain it and hope they understand. Some really do. People want to help, just like you would find yourself looking for ways to help someone. This is my life. My daughter is in Calif at SDSU. I'm completely alone here and I think it's so I can learn to master this and help others. My fondest wish would be to be able to study neurology and TN, and as a patient myself, be the the TN doctor that really, truly gets it and has the resources and intelligence/training to change people's lives. But I'm 48 this year...could it be done?

68

Better late than never replying here, Jessica.

I've really been through the mill and two jobs since I posted that question.

I feel so tired and stupid on my medication. I start my dream job tomorrow, but have had difficulty at my past two.

I write this in the middle of a fairly bad Type II TN attack. Lately, though, the pain has even been worse. I'm anxious about starting my job tomorrow. My family won't sustain if I don't.

I'm hurting so bad right now that I am tempted to take yet another pain pill. I won't. Oh . . . you're right. I too love typing. I love working. I love contributing. Being a drain goes against my nature. I'll lose my girls if I cannot provide for them.

I should be excited right now. I should be up preparing, but sitting here, waiting for my pain pill to work and typing is the best I can manage.

Maybe, I'll make it somehow. The attacks, which are becoming more and more spasmotic like Type I, with all of the heavy, burning, aching of Type II, don't become severe until late afternoon/night.

Thank you for replying. My Mom is in medical records. She loves her work, and as a 60 plus year, obese, diabetic, has more energy than I do at 40 with this disease and on these medications.

Oh, I hope I can do this.

Thank you for the prayers,

Stef

JessicaG said:

Hi Stef — I am a graphic designer and I also have ATN. I just took the last month off to recover from my MVD surgery and am starting work back up again full time on Thursday and I'm a little bit nervous about it. I am self employed and luckily am able to work from home. However, its not all it's cracked up to be. I really started going down hill about 6 mo. ago. The meds make me so tired and so stupid I really was doing a terrible job at my work and it was totally noticeable. I am still on medication, but am slowly weaning off. My plan for being back at work is to really give myself a break. Go to bed early, stay hydrated, eat well and often, and take breaks. Take a little nap if needed or when I really feel like crap, just get up and move around. Not trying to power through it. I've been taking baths every night and that has really helped me sleep well and feel calm and relaxed and pain free. I've also started journaling my feelings about all of this and I think that has mentally helped me keep it together so when I go back to work I can just focus on my job and not my face. Good luck to you. Cheers, Jessica

69

Colleen,

I can relate with so much of this. You have no idea. Thank you for sharing.

Since I posted this, I've left two jobs and begin a 3rd tomorrow. This one is the one I really want. Between the pain and the meds I take to control it, I've failed to thrive at work. I really hope this time will be different, that something will inspire me, take my mind off the pain.

You sound so strong.

Stef

Colleen said:

Hi Stef,

I work as an executive assistant for the CEO of a credit union with 8 branches. I love this job, as I loved all of my jobs. This one is special. I do everything I can to keep my place there. I've been there for 9 months, and am quickly burning up my vacation/sick days with doc appts, days when I can't function from pain. I get in early, I stay a little late, and I am committed to being the best exec sec I can be....with TN.

My pain increases as the day progresses. I bring a collection of meds to help me through. Have to choose carefully and consider timing, as most of my meds make me a spaced out fruitbasket. The most frequent thing that runs through my mind when I feel I can't take another minute is....I will be home in (x) number of hours. I can behave like a neanderthal, medicate myself properly and take care of myself and try to get through the night. I will get enough sleep so I can be more alert. When the pain comes, I will conceal it if it's minor; if it's major I will discuss with my boss. I keep her abreast of my appts, my ups and downs, my symptoms, and my embarrassment at having to put this info on her. When I'm functional, I am all over everything. Every detail, nuance, who needs what & when and how. I have a face though that shows every shock, twinge, sharp jag. I tell my co-workers that I sustained nerve damage during a dental procedure, and now I have to take very hard meds to control the resultant pain. I tell them that if I ever behave in a way that seems uncharacteristic of me, that I encourage them to bring it to my attention so I can adjust the look on my face (cringing, snarling). I use humor to make them comfortable enough to give me feedback so I can make small changes like softening my face, smiling more, withdrawing less.

my hand is constantly attached to my face, pressing on the area of nerve pain. I apologize immediately if I get impatient and adjust my mindset. I show them the meds I have to take, explaining each one, and the side effects. I tell them that it hurts a great deal, but I am committed to do an excellent job and try my very best. If I didn't do these things, I can't imagine what they would think about my strange behavior.

When I'm nauseated from pain, I throw up in the bathroom, clean up and go on. When I have high level pain I choose projects that I can do with some privacy so as not to upset other co-workers.

What, makes me feel worse is having to make that call saying I won't be in today. It happens. I believe I have the right combination of good, authentic people who are very caring but practical, and want me to success. They know how happy I am to be there and that I try with everything I have. Although I feel like I have half the talent I had years ago, I still can kick some administrative ass. I use tasklists so the smallest most insignificant item don't fall through. I don't just let things happen, I'm eyes & ears soaking up every situation I can assist with proactively. I've had to take hydrocodone at work for outrageous pain, but I chip away at it with small bites, frequently with water, until I find the magic number that can keep me going. For a monthly boardmeeting, I forego neurontin so I can have some clarity while taking minutes, but then rush home and Rx as fast as I can. I've fallen asleep in the restroom, dazed out of my mind and woozy. Coffee and tea keep me going on those days.

At home, I am a neanderthal. I shuffle, focus on dumb things, think (neurontin gives me run-away train thoughts that can go for hours). Only when i feel confident do I go out, do my laundry, buy some food and gas, then return home where I can be my TN self. I take very good care of my cat, she's a focal point and gets attention, food, gets brushed, petted, etc. For myself though, I take little care. I iron my clothes 4 work, but my hair looks like a 4th of July firecracker show and I can't be bothered with it. Fortunately they think it's intentional and trendy. I sound very lazy but I'm not. I'm not able to do regular things a lot of the time. Housework happens once a week and I time it around my level of pain. If the pain is relentless, the housework can wait.

I constantly cancel plans with friends or dates because I felt ok when the plans were set, but then had an attack and can't go. I explain it and hope they understand. Some really do. People want to help, just like you would find yourself looking for ways to help someone. This is my life. My daughter is in Calif at SDSU. I'm completely alone here and I think it's so I can learn to master this and help others. My fondest wish would be to be able to study neurology and TN, and as a patient myself, be the the TN doctor that really, truly gets it and has the resources and intelligence/training to change people's lives. But I'm 48 this year...could it be done?

70

Hi, everybody.

I've enjoyed reading your replies tonight to this old thread.

Since I've posted it, I've blown through two jobs which were not for me. I constantly struggled, though, to either stay out of pain, or stay as sharp as I need to be.

I've also come off of my round-the-clock pain med, which was wrecking my health and mind. Now, when I get good insurance, I have a plan to step to Suboxone, then taper down and off whenever I begin having time to experiment with trying procedures. I'm desperate. I would let them kill this darn nerve if insurance would pay for it, at this point.

Pardon my sarcasm at the moment. I'm battling very bad pain.

God bless all and best wishes for a fine new year.

May 2013 be the year that breakthroughs are made which make living with Type II TN more bearable, if not curable.

Stef

71

I'm so glad to see this thread revived! I left my last job a little over a year ago. I worked there five L-O-N-G years, especially since my ATN horror hit 2 months after I started the job. I walked into that place a friendly, outgoing, upbeat person and walked out an introverted, cowering (literally like a dog whimpering with his tail between his legs), morose loner. I stayed 5 miserable years because of the money and health benefits. Finally left on my own after being told after working 10-12 hr days every day that my productivity was LESS than HALF of what was expected.

I am so grateful to have had this year off. My pain, for the most part, has been under control (still on Vicodin though). I do have to go back to work soon though. My COBRA is up in March and we have had to use way too much of our home equity credit line to pay bills (I went and got one shortly before I left work while I still had good credit). I went back to school to get my EMT and Phlebotomy certifications so that I would be qualified to draw blood at the blood donor center. Very low pay, but excellent benefits and great hours. School was sooooo hard for me at this age (59) and having ATN pain and medications. But I passed both! I almost flunked Phlebotomy because I kept messing up the tubes, drawing the wrong one or putting the wrong label on - also stuck myself (clean needle as I took the cap off, thank goodness). The clinic where I made the most mistakes and stuck myself asked that I leave early and NOT COME BACK! I got in my car and sobbed so hard that I couldn't drive out of the parking lot for a good 20 min. I get anxious even thinking about applying for the blood donor job. I'm terrified that 1) I apply and get a rejection letter, 2) I apply and get an interview and then blow the interview, or 3) I get hired, start the job and am unable to do it. At least at the blood center, it's the same process for every patient, not as many variables to have to remember. Oh, I'm getting nervous just typing this!

I'll keep ya'll posted. Stef, good luck to you. I hear you about wanting to kill the nerve. I already tried to get someone to do that -- they wouldn't do it. I have talked my Pain Doc into doing a Sphenopalatine injection/block or RFA if insurance will approve. He quit doing them because he feels the benefit is too short term for the risks. I keep looking for THE answer to this relentless pain!

Mary

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Hi guys

It has been a while since I was on here. Once the doctor got the Tegretol dosage I have been living relatively painfree. On the downside, I was made redundant on the 30 Nov 12. I had a new boss start at my work the same week that I went on sick leave. During that time, they obviously had to cover for me and it was realised that they could function without my position. While TN (or illness generally) was not directly responsible, it was indirectly.

At the moment I am trying my hardest to find work, but as I live in Tasmania (which is the little island state at the bottom of Australia) which is quite small, work positions are few and far between. Currently coping on my redundancy payout, but it will not last much longer so fingers, toes and whatever I can are all crossed that something will come up soon.

Cheers Steve

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I was diagnosis with TN2 back in 2008/2009. I am a family counselor and drive to family homes to provide the counseling. I only work about 4 hours a day plus driving, but some days I can work a lot more hours. The problem is the driving on the medication. I don't have episodes often, The episode in 2008/2009 last for six months straight. The one I am having at this moment start Tuesday and is killing me. I have been to the emergency room twice this week because of the pain, crying. It is not a question of working, it is how do I live. When I have the pain, all I love, I stop, I cannot cook, take a shower, brush my teeth, talk, paint, take a simple walk. My life feels worthless, and not amount of pain medication can help. It is weird, but the only thing that stops the pain, and it only stops for moments, maybe three minutes at a time, is drinking ice water, and swishing in my cheek and spitting out. The pain I am having now is worse than it has ever been in my life. I don't want to know how to work, I want to know how to live and function.

Best regards,

Cindy

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Awl, i feel so bad for you Cindy. Wish I had an answer for you. Have you seen a neursurgeon? I dont know what procedures you've tried already though but if it were me, I would consider an MVD. Not saying I'd end up having one but I wuld look into it. You have my deepest empathy. I hope your current episode is short-lasting.

Mary