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Reply
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Folks, please help!!! I'm relatively new to the board, but have had RSD for 7 years in my dominant hand. I'm a university professor-- so I type on the computer all day, and my hand is slowly getting worse, with slower typing and more errors.
I have asked for ADA accommodations-- my doc recommends a secretary-- but the university has refused. I can't consider filing suit-- it' s just not something I can go through now.
I have been working longer and longer hours as my hand gets worse. My recent evaluation was mildly negative-- I don't produce enough manuscripts, etc. But by objective standards, I'm far above average, because I'm working so hard in compensation. Maybe discrimination? I don't know.
I do know I've developed hypertension, asthma, osteporosis, 3 stress fractures in these 7 years at age 50. My family died young of heart disease. Neurontin and Prednisone added 60 pounds that I haven't been able to get off. Morphine doesn't help with weight reduction either.
I can't get on a good exercise plan because my work load is so extreme. Think 70-80 hours a week, and I'm a single mom with 2 kids. I am completely exhausted.
I tried to talk to my pain doc about it, but he is uncomfortable and doesn't know how to talk about coping issues (his terms). I have disability insurance, but in my family, we are all high achievers, and I've never actually thought about going on disability. But given the weight out of control, the multiple illnesses, and the work out of control (not to mention the pain), I'm wondering if I'm being stupid.
When does one just say it's too much to try to do a job when your body doesn't work right? Is there a solution I can't see?
Many, many grateful thanks for anyone who will respond to me. Please just tell me what you've learned!
Blessings,
Annie |
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Annie,
I do feel for you and I know what you are going through.
I have RSD in my left foot from a work related injury. I wasn't able to go back to work, because I couldn't do the job that I did before. I have been living on pennies for the past few years.
You are hurting yourself by still typing. I believe there are programs out there that will type what you say. I know a friend that uses one. I couldn't figure out how he was typing so fast. you just speak into the microphone and it types it.
It also sounds like you are under a lot of stress. Stress affects are bodies in wicked ways and makes us sick. As far as the weight gain, I would talk to the doctor that prescribes your medicine and let him know about the weight gain. It at all possible I would try a different medicine that didn't cause you to gain weight. I was on a medicine once for my RSD that caused weight loss and I went down to 100 pounds. I couldn't eat much while I was on that medication. But when you suffer from weight loss the doctors won't help you. If I am taking a medication that makes me gain weight, my doctor changes my med.
No, you are not being stupid. From what you are saying that you work 70-80 hours a week. I don't think that you would be happy, not working at all. You really need to cut back on your hours if you can. Working that many hours will make any one sick. That is not a want, it is a need.
Take care,
Kara
From: "RSD Helpline Support Group" <[email protected]>
Reply-To: "RSD Helpline Support Group" <[email protected]>
To: "RSD Helpline Support Group" <[email protected]>
Subject: When is enough, well--- enough?????
Date: Thu, 30 Mar 2006 18:20:09 -0800
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When is enough, well--- enough?????
Reply
|
|
| From: fairchild7437 |
Folks, please help!!! I'm relatively new to the board, but have had RSD for 7 years in my dominant hand. I'm a university professor-- so I type on the computer all day, and my hand is slowly getting worse, with slower typing and more errors.
I have asked for ADA accommodations-- my doc recommends a secretary-- but the university has refused. I can't consider filing suit-- it' s just not something I can go through now.
I have been working longer and longer hours as my hand gets worse. My recent evaluation was mildly negative-- I don't produce enough manuscripts, etc. But by objective standards, I'm far above average, because I'm working so hard in compensation. Maybe discrimination? I don't know.
I do know I've developed hypertension, asthma, osteoporosis, 3 stress fractures in these 7 years at age 50. My family died young of heart disease.
Neurontin and Prednisone added 60 pounds that I haven't been able to get off. Morphine doesn't help with weight reduction either.
I can't get on a good exercise plan because my work load is so extreme. Think 70-80 hours a week, and I'm a single mom with 2 kids. I am completely exhausted.
I tried to talk to my pain doc about it, but he is uncomfortable and doesn't know how to talk about coping issues (his terms). I have disability insurance, but in my family, we are all high achievers, and I've never actually thought about going on disability. But given the weight out of control, the multiple illnesses, and the work out of control (not to mention the pain), I'm wondering if I'm being stupid.
When does one just say it's too much to try to do a job when your body doesn't work right? Is there a solution I can't see?
Many, many grateful thanks for anyone who will
respond to me. Please just tell me what you've learned!
Blessings,
Annie | |
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Hi Annie, I know exactly what you are going through! I am a work-aholic by nature myself and wouldn't dream of going on disability. (I was on short-term disability for 3 months and I was going crazy!) I am also putting on weight and dealing with other consequences as a result of my RSD. However, being on STD taught me a few things. Stress definatly made my RSD worse. I am now back at work at a nearly stress free job, though I am working more hours each day. My RSD isn't nearly as bad as it was when I was in a more stressful position in a stressful environment. I know you don't wish to change jobs, but I don't think working that many hours is doing you any favors. If you still received a slightly negative review, then I wonder if working those extra hours are paying off...? I agree with Kara - I've heard good things about the software you can speak to and it will type for you. What about getting an assistant? I'm sure there are a few Grad students who would be willing to work with you, which would hopefully reduce some of your stress. Is there a disability resource center at the university? I believe most schools have a center where students with both physical and learning disabilities can get help - maybe they could point you in the right direction? Do you work with any other people with disabilities? Are their needs being tended to? Is there a secretary you could "share" with someone else who is also overworked? Good luck!
Best,
Meri |
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Reply
| |
I am also a workaholic by nature as well. I went back to work for a month after getting RSD and it got so bad that I never went back. In one month my RSD went from my toes to my knee. The pain was so bad that I was bed ridden for months. I was so terrified of pain after that. I had a good job and made good money, but I was on my feet all of the time. I had to work outside on occasions too. I didn't want to loose my job, but didn't feel that I had a choice. I asked for a sit down job, but was told that it was not possible. I worked at a prison. So I guess you could say that a job there without stress is impossible. And they don't really have sit down jobs at a prison either. I knew that if I continued to work there that my RSD with spread throughout my body.
How do you find a job without stress, that doesn't require very much standing, walking and is a the right temp? I can't take it if it is too hot or cold... I would love to get a job.
Kara
From: "Meredith_Anderson" <[email protected]>
Reply-To: "RSD Helpline Support Group" <[email protected]>
To: "RSD Helpline Support Group" <[email protected]>
Subject: Re: When is enough, well--- enough?????
Date: Fri, 31 Mar 2006 06:36:59 -0800
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When is enough, well--- enough?????
Reply
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| From: Meredith_Anderson |
Hi Annie,
I know exactly what you are going through! I am a work-aholic by nature myself and wouldn't dream of going on disability. (I was on short-term disability for 3 months and I was going crazy!) I am also putting on weight and dealing with other consequences as a result of my RSD.
However, being on STD taught me a few things. Stress definatly made my RSD worse. I am now back at work at a nearly stress free job, though I am working more hours each day. My RSD isn't nearly as bad as it was when I was in a more stressful position in a stressful environment. I know you don't wish to change jobs, but I don't think working that many hours is doing you any favors. If you still received a slightly negative review, then I wonder if working those extra hours are paying off...?
I agree with Kara - I've heard good things about the software you can speak to and it will type for you. What about getting an assistant? I'm sure there are a few Grad students who would be willing to work with you, which would hopefully reduce some of your stress.
Is there a disability resource center at the university? I believe most schools have a center where students with both physical and learning disabilities can get help - maybe they could point you in the right direction? Do you work with any other people with disabilities? Are their needs being tended to? Is there a secretary you could "share" with someone else who is also overworked?
Good luck!
Best,
Meri | |
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Hey Meri.....Thanks for your answer. I appreciate your thoughtfulness, because you thought through all of the solutions I struggled to come up with over the years (and it took me far longer.) But it seems that I'm in a catch-22.
I am tenured and therefore cannot be fired easily. However, I can be messed with, and that is going on in a major way. How? My students don't get the placements they need. Mysteriously, they don't get paid for the month through some error in paperwork that no one can find; it takes weeks for the university to correct itself and pay them. My students are not selected for awards, even though they are highly accomplished. It's upsetting to watch.
In my evaluation, my work is nationally recognized and therefore difficult to completely ignore. However, I am told by our Chairman that I am clearly on a decline (the written evaluation is at least acceptable this year). He appoints other people of much less junior status to head my area, people I have even supervised earlier in my career. He threatens to take lab space away that is critical to my research operation, telling me that I'm not using it enough, even when it is clear that we are fully utilizing it. He accuses me of lying to him, telling him we have fewer employees on my projects than we do. I have to go pull the employment records to prove that I do employ these people. When our lab is vandalized, he claims there is no money to fix it, although other professors can get repairs paid for by insurance.
When it comes to functioning in the department, I am treated like I am invisible, so that tasks that are in my specialty area that I could easily complete are not assigned to me. These tasks often carry extra pay with them that I cannot earn. I am never nominated for any positions of responsibility, even when it is something I could do with my verbal skills.
One colleague apparently heard I was "on drugs" and accused me to my face at work of being an addict. Although my doctor provided a statement that I was taking medically necessary rx's at appropriate amounts with no indication of addiction or abuse, my supervisor declined to address the claims of my colleagues. The rumors made all the rounds. It was extremely painful.
The result of this process is that I walk into a hostile environment every day, hoping to just get along and do my work, but all day there are explosions-- and I have to drop what I'm doing and provide evidence that I'm not an addict, or that I actually did publish several manuscripts, or that some number of people do work for me. It makes it extremely difficult to get real work done.
I asked for a voice activated system and used one for a while, but with about 75% accuracy, I spent so much time fixing the 1/4 words that were errors that it became senseless. I asked for a secretary, with the support of my doctor, but the university refused to hire one or to allow me to use any of the existing secretaries in the university, even part-time.
I have graduate assistants-- but these students are supposed to do professional work during their jobs-- not help me. I would get complaints to the head of our department if I changed what they do. In addition, about half of my work consists of things they can't see-- grades on their friends and evaluations on other students. Privacy laws prevent one student from seeing another student's materials.
ARGH. There is a disability resource center. However, the university's EEOC officer specifically told me not to contact them. Instead, I made the request for administrative assistance through his office. He has completely turned it down, and it has been through all levels of appeals.
Money for a secretary would have to be approved from someone. In denying my request, I have no funds to hire someone from.
I have explored the university to see if there are any other people with disabilities, without success. They must be here; my bet is that they have had the same experiences as me.
I hate to "yes, but"--- yet this is the situation right now. I'm getting so exhausted trying to keep up with the normal demands of this job, that I'm completely demoralized. I do good work, but the work is all within the expectations of the job. It's just taking longer.
Does this help clarify things? I've even hired an attorney to help resolve things with the university. He could not do it. My alternative would be EEOC-- unlikely to improve the work atmosphere.
I will have to change cities if I change jobs, because of my specialized area, and I can't do that for another year or two at the earliest. Finding one less stressful would be ideal; but I feel stuck and scared.
So that's a bit more info on what I've tried so far. Can you help me think of anything else? I am so grateful for any info, including other people's experiences...
Blessings,
Annie
|
|
Reply
| |
Dear Annie,
As I know that RSD is the most horrible experience that I have had to deal with, even childbirth was easier. I am so sorry to hear that work is getting more difficult for you. As much as I love to work and know that it would be better than nothing I physically cannot deal with it. I would need a job to accommodate my needs instead of the other way around. I am in a battle with the company I did work for because it was caused from an injury that happened while I was working and still they chose to deny me and fire me. Hang on as long as you can just the mental relieve is something. having something to stimulate the brain. however, receiving disability is not a weakness only a cause of having become a victim of RSD. You seem very intelligent and I would imagine that putting energy into helping research and developing support groups would be helpful. That is my most difficult challenge. but I have made it my mission to educate people on RSD and just how disabling it is
Keep up the good fight
Elaine -----Original Message----- From: RSD Helpline Support Group < [email protected]> To: RSD Helpline Support Group < [email protected]> Sent: Thu, 30 Mar 2006 18:20:09 -0800 Subject: When is enough, well--- enough?????
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New Message on RSD Helpline Support Group
-----------------------------------------------------------
From: fairchild7437
Message 1 in Discussion
Folks, please help!!! I'm relatively new to the board, but have had RSD for 7
years in my dominant hand. I'm a university professor-- so I type on the
computer all day, and my hand is slowly getting worse, with slower typing and
more errors.
I have asked for ADA accommodations-- my doc recommends a secretary-- but the
university has refused. I can't consider filing suit-- it' s just not something
I can go through now.
I have been working longer and longer hours as my hand gets worse. My recent
evaluation was mildly negative-- I don't produce enough manuscripts, etc. But
by objective standards, I'm far above average, because I'm working so hard in
compensation. Maybe discrimination? I don't know.
I do know I've developed hypertension, asthma, osteporosis, 3 stress fractures
in these 7 years at age 50. My family died young of heart disease. Neurontin
and Prednisone added 60 pounds that I haven't been able to get off. Morphine
doesn't help with weight reduction either.
I can't get on a good exercise plan because my work load is so extreme. Think
70-80 hours a week, and I'm a single mom with 2 kids. I am completely
exhausted.
I tried to talk to my pain doc about it, but he is uncomfortable and doesn't
know how to talk about coping issues (his terms). I have disability insurance,
but in my family, we are all high achievers, and I've never actually thought
about going on disability. But given the weight out of control, the multiple
illnesses, and the work out of control (not to mention the pain), I'm wondering
if I'm being stupid.
When does one just say it's too much to try to do a job when your body doesn't
work right? Is there a solution I can't see?
Many, many grateful thanks for anyone who will respond to me. Please just tell
me what you've learned!
Blessings,
Annie
-----------------------------------------------------------
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Reply
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Thanks, Elaine. Yes, I would like working on research on this and forming support groups. I doubt I would stay "detached" if I were on disability, because when I've been on medical leave before (6 months at the time of first appearance of symptoms), I used the time to work out every day (to improve pain control), to work on projects that I could do in a more measured way, with breaks when I needed. I also kept pretty socially active. There's nothing wrong with my verbal ability-- it's just the blasted hand.
But......you know. That would be a huge loss. I do love what I do for a living. I just can't find an environment less stressful, and moving to get a similar job in a better environment seems risky, as I get older and the RSD gets slowly worse. I'm not sure I will be able to stay at the productivity level I've been at. The truth is that if I worked normal hours, I couldn't possibly do it. I'm just as smart, but much, much slower. What if that ticked off a new boss, while I was still in the propationary period? It is a frightening thought.
The other thing is that I know I have my intelligence, so disability seems like I'm ungrateful. But the costs of competing in this arena are so extremely high, and I sort of don't want to die young of heart disease because my weight ballooned and I stopped working out from overwork. These are bad decisions.
Do any other people out there struggle with these issues? It seems like people either were forced illegally out of their jobs or were quickly declared disabled. If you are on disability, did your doctors just mandate it? If you continue your job, do you have interference, too?
Thank you ALL! |
|
Reply
| | From:  TipperO | Sent: 3/31/2006 11:39 PM |
HI Annie, Here's one thing I know for sure...those of us with RSD have to do what we can to put ourselves in the best possible environment. I was a critical care nurse for 23 years and when it became apparent I could no longer work, you would not believe the comments I endured from "friends" in the medical community. People actualy told me they "envied" me for my early retirement..no one seemed to get that disability is not a choice...most people don't get how terrifying it is when you realize your body is making it so you can no longer work and support yourself...something I found extremely hard to accept. My advice is to take care of you. I would hire another attorney and see if you can broker some kind of lay off package and also speak to your doctor about the possibility of social security. ( don't know if that is adequate to support you though) and then do you think you could do some type of
consulting work with your back ground? I think social security allows you to work in some capacity, but I don't know a lot about it. I think the fact that you are having trouble keeping up with the work load in spite of the increased number of hours is your body's way of telling you it's time to make some changes and put your health first. Best wishes to you and please try not to internalize the ridiculous and ignorant things that people say. YOU know the truth about yourself and that is all that matters. Take care!
When is enough, well--- enough?????
Reply
| | | From: fairchild7437 |
Hey Meri.....Thanks for your answer. I appreciate your thoughtfulness, because you thought through all of the solutions I struggled to come up with over the years (and it took me far longer.) But it seems that I'm in a catch-22.
I am tenured and therefore cannot be fired easily. However, I can be messed with, and that is going on in a major way. How? My students don't get the placements they need. Mysteriously, they don't get paid for the month through some error in paperwork that no one can find; it takes weeks for the university
to correct itself and pay them. My students are not selected for awards, even though they are highly accomplished. It's upsetting to watch.
In my evaluation, my work is nationally recognized and therefore difficult to completely ignore. However, I am told by our Chairman that I am clearly on a decline (the written evaluation is at least acceptable this year). He appoints other people of much less junior status to head my area, people I have even supervised earlier in my career. He threatens to take lab space away that is critical to my research operation, telling me that I'm not using it enough, even when it is clear that we are fully utilizing it. He accuses me of lying to him, telling him we have fewer employees on my projects than we do. I have to go pull the employment records to prove that I do employ these people. When our lab is vandalized, he claims there is no money to fix it, although other professors can get repairs paid for by insurance.
When it
comes to functioning in the department, I am treated like I am invisible, so that tasks that are in my specialty area that I could easily complete are not assigned to me. These tasks often carry extra pay with them that I cannot earn. I am never nominated for any positions of responsibility, even when it is something I could do with my verbal skills.
One colleague apparently heard I was "on drugs" and accused me to my face at work of being an addict. Although my doctor provided a statement that I was taking medically necessary rx's at appropriate amounts with no indication of addiction or abuse, my supervisor declined to address the claims of my colleagues. The rumors made all the rounds. It was extremely painful.
The result of this process is that I walk into a hostile environment every day, hoping to just get along and do my work, but all day there are explosions-- and I have to drop what I'm doing and provide evidence that I'm not an addict, or that I
actually did publish several manuscripts, or that some number of people do work for me. It makes it extremely difficult to get real work done.
I asked for a voice activated system and used one for a while, but with about 75% accuracy, I spent so much time fixing the 1/4 words that were errors that it became senseless. I asked for a secretary, with the support of my doctor, but the university refused to hire one or to allow me to use any of the existing secretaries in the university, even part-time.
I have graduate assistants-- but these students are supposed to do professional work during their jobs-- not help me. I would get complaints to the head of our department if I changed what they do. In addition, about half of my work consists of things they can't see-- grades on their friends and evaluations on other students. Privacy laws prevent one student from seeing another student's materials.
ARGH. There is a disability resource center. However, the
university's EEOC officer specifically told me not to contact them. Instead, I made the request for administrative assistance through his office. He has completely turned it down, and it has been through all levels of appeals.
Money for a secretary would have to be approved from someone. In denying my request, I have no funds to hire someone from.
I have explored the university to see if there are any other people with disabilities, without success. They must be here; my bet is that they have had the same experiences as me.
I hate to "yes, but"--- yet this is the situation right now. I'm getting so exhausted trying to keep up with the normal demands of this job, that I'm completely demoralized. I do good work, but the work is all within the expectations of the job. It's just taking longer.
Does this help clarify things? I've even hired an attorney to help resolve things with the university. He could not do it. My alternative would be EEOC--
unlikely to improve the work atmosphere.
I will have to change cities if I change jobs, because of my specialized area, and I can't do that for another year or two at the earliest. Finding one less stressful would be ideal; but I feel stuck and scared.
So that's a bit more info on what I've tried so far. Can you help me think of anything else? I am so grateful for any info, including other people's experiences...
Blessings,
Annie
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Thanks, Terry....You've really got the picture, don't you?! Yep, the same kinds of comments here when I was on disability. I do have good disability insurance. My income might even go up on disability, because of the gradual decline in the income I can make now.
You hit the nail on the head. If I can be a professor decently at 70 or 80 hours a week, is that ok? Or is that a picture of someone who is disabled but working so hard to compensate that she may wind up killing herself? Others are shocked that my thoughts are turning to disability, but I live with the effects of this workstyle on my health, my own happiness, and my children's lives.
Weirdly, my doctor does not bring it up, and when I try to talk to him about work, he says he doesn't know how to help me. I belive he really is telling the truth-- he just doesn't know.
I don't know either. But I'm painfully, desperately tired, and I've been this way for 7 years, pretty much constantly. When is it enough, y'all?
ARGH. Hard to talk about, isn't it?
Annie |
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Ah, Sam-- I'm glad you wandered over to the support pages. The RSD completely went away? Man-- what did that guy do to you!? I would have given anything to ditch the RSD. After 7 years, they seem to say it ain't going anywhere, and I have accepted that I'll manage it rather than get rid of it. Imagine me wrestling an alligator while I, say, write manuscripts all day! Great image!
You are ONLY 4 years younger than me! I was Ph.D.'d by age 33, so I've been moving up the u ladder for a while. But most of that time, was pre-RSD. Frankly, I'm more amazed by people who go BACK to school. I'm not sure I would have the drive to do it these days. But I sure do like to teach and mentor students. You sound like you would be a great teacher yourself. What's your field?
Write when you can. I'm gonna go google that guy!
Thanks,
Annie |
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OOO {{{{{{{{Annie}}}}}}}}}} I fully understand where U are at in all of this.. I have started in my eighth yr of dealing with all of this.. Dear one,,, stress is not helping any of these situations out.. I use a speak n type for all of my typing when I am hurting really badd..When pain levels changes so does your voice,,, u have too reset for that also... Stress will make all of these situations worse... All of the pain levels went crazy with my moving n all.I got sicker,,,, Maybe a part time assistant too help cut down on the hours... Anything that you make easer for you is what is needed... with daughters help as well.. Meds are going too have side affects.. I am getting over two reactions rite now.. WOWOW,,, any thing we can help with be happy too any time,,,, hope we can help ,,, please keep us informed... Welcome too the group!!!!!!! |
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Hello {{{{SAM}}}}} thanks for following rules dear... I think we could want too know more what was directed at you with the treatment... How you heard about it.. U know we all suffer.Suffering is not any kind of funn... I know we would all like too hear about this... I know other countrys treats sicknesses alot differently from the USA,,,, wowow what we have allowed too happen here with all the greed running soo rampantly!!!!!!! LEt us know more please!!!!! Thanks u can email also if want too [email protected],,, thanks annie |
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