Working with a Chronic Illness

Posted by karina77 @karina77, Apr 7, 2019

I am 17 years old and have a job! I work 2 days a week for 4 hours. I have Chronic Fatigue Syndrome and Orthostatic Intolerance. My illness has made going to work and working incredibly hard. My mind and body have a hard time keeping up with everyone and everything going on. I have called in more than a few times due to this, which has upset my manager. I understand how inconvenient it can be to have someone call in. But I never know when my symptoms are gonna flare up and when I’m not gonna feel well. I talked with my manager and she was a bit cold about the whole situation and called me unreliable..she then called back apologizing. What can I do about this! I need to work to make money! But my health isn’t the greatest either! My manager isn’t to happy! Is there any chance my specialist at Mayo could make a list of accommodations I could have for work? I just need some thoughts and advice on how to deal with work!

@karina77
Welcome to Connect.
I am so sorry that such a young person has to deal with so much, but you have your entire life ahead of you so it is important to know how to deal with your conditions, other people and your rights.
I am NOT in the medical field and I have NOT been a patient at any Mayo Clinic(s).
I have, however, been a principal and a supervisor of Special Education.
Since you are only 17, I might assume that these physical illnesses have been 'going' on for some time and has impacted your education.
Have you ever been given a "504 ACCOMMODATION PLAN" or an "IEP" (Individual Education Program)? Or, have you been 'diagnosed' as HANDICAPPED or having a HANDICAPPED CONDITION while you were a student in school (or after, if you graduated)?
I ask because you made mention if the Mayo Clinic could make a list of accommodations.
I also ask you this because if you have had any of the above, you are covered under the Federal Law for Disabled People.
Among other rites, you cannot be refused a job because of your handicap, assuming you can perform the job when hired.
And, you cannot be fired because of your handicapped condition should you develop one during your tenure at a job.
Now, this is very basic information and you could look up all the specifications.
All that being said, I am NOT familiar with what the law says if you are no longer able to perform the duties of the job you were hired to do.
I do not know if the hiring facility must offer you another position.
I just dealt with educational impacts.
In addition, I've been out of the field for 5 years so I don't know if there have been any changes. I doubt it.

Now, as far as working and money.
You MIGHT be eligable for Disability (SSI).
For that, you would have to apply.
You can find information for that on the Social Security Administration web site.
If you go this route, just make sure you have all your paperwork available.
The more documentation (regarding your illnesses) you have, the better.
This can include, but not limited to doctor reports, work evaluations, school reports, etc. Anything that contributes to enhancing your claims.
This process can take several months and that is just to find out if you have been accepted or denied. This does not include the process of fighting if you are denied.
As a minor, I am pretty sure you will have to get one of your parents (or LEGAL guardian) to initiate the above.

In the meanwhile, as far as work is concerned, there are many jobs that can be done remotely from home.
You might want to look into such jobs.
This way, on days you are not feeling well, you might be able to do it from bed. Or, if it is the type of job where you have to have a certain amount of work done in a given time, you can work at your own speed.

I know this is long. I tend to write on and on.
I DO hope this helps you with your quest.
Feel free to contact me if I can be of further assistance.

Wishing you LOTS OF LUCK and GOOD HEALTH!
Ronnie (GRANDMAr)

REPLY

@karina77 I had no idea what Orthostatic Intolerance is so I just googled it. Are you being treated for it? It sounds as if there are some possible treatments. I hope you have a very good doctor who is familiar with this condition and can help you, if not then try to find another. What type of doctor treats this?

Also, do you have episodes, or is it chronic? It sounds as if you have episodes, and it says those pass quickly. Would it be possible at work to go to a backroom and rest for a brief period of time? When I was young I had horrible migraines and the secretary set up some armless chairs in a row in the coffee room for me to lie down for a short period. With a migraine that didn't really help much, but might it for your condition?

Other than that, I think @grandmar has some great suggestions. I hope you can find some methods or medications that will help with this, particularly since you have a lifetime ahead of you. Let us know how things work out for you.
JK

REPLY

Karina77 I really can't add anymore then what @grandmar. @contentandwell said except how old where you when this started,?I may have missed this but keep records of when it started and symptoms not only see a specialist but social security it maybe necessary to see a lawyer also since your still a minor .Best to you.

REPLY

I recommend talking with your provider about appropriate accommodations for you, and requesting them at work. It sounds like your current job may not be the best fit though- while they can’t legally discrimate, they can be unpleasant and unsupportive.

If this job doesn’t work out, you could contact your local Vocational Rehabilitation office- they provide free assistance in job hunting to individuals with disabilities.

If working does not work out at all, SSI could be an option. When you’re under 18, your parents income is counted against you (it’s a financial-need program, so they determine how much you need based on income). Once your turn 18, your parents income won’t be counted.

REPLY
@tiymay

I recommend talking with your provider about appropriate accommodations for you, and requesting them at work. It sounds like your current job may not be the best fit though- while they can’t legally discrimate, they can be unpleasant and unsupportive.

If this job doesn’t work out, you could contact your local Vocational Rehabilitation office- they provide free assistance in job hunting to individuals with disabilities.

If working does not work out at all, SSI could be an option. When you’re under 18, your parents income is counted against you (it’s a financial-need program, so they determine how much you need based on income). Once your turn 18, your parents income won’t be counted.

Jump to this post

Karena, I understand a really feel for you. I have followed This Mayo Thread or whatever it is called now for several months now looking for help myself. Last July I came down with what I still feel I Lyme Disease. But after chasing it around with incompetint doctors in my state, New Mexico, rated last in the country, no one would give me an exact diagnoses.
So I have reseached it and many thinigs that fall close to it. Chronic Fatugue, West Nile Virus, Fybromyalgia, Lupus and many others. Lady Gaga is the Leader in the Fybromyalgia right now. They all have very similiar triats.
One of the most comon I have found is REST, REST& MORE REST!. I know that my doctors and I are masking many of my problems or hurts and soreness with certain medications that allow me to conduct a somewhat normal everyday live. But other than me skipping a med at a certain time that will put me down as you describe is the not getting rest. I am 72 and have been an active hiker, fisherman, skier, played golf for 65 year and many other things. I tried playing 9 holes of golf the other day. I was down for a week. Maybe I got off track a bit. What I am trying to say is you can't live life as you normally have. You have to cut back at least for now and watch what you do. Plan your live around your work and social schedule. That may sound harsh but that is the only way to address what you have. I am self employed and run my own business. I have to plan the days so I know when to rest the day before and hope I wake up feeling ok. There are days when I don't but I go ahead and see my customer, which can take 2 -6 hours. When I come home I usually go stright to bed. Last Thursday I had to travel 600 miles round trip the same day. I slept just under 30 hours this weekend and just got up from a two hour nap on Monday.
Sorry for sounding like a lecture but you have to go through it. It dosen't seem to want to go away from us! By the way where did you here about Othorstatic Intolorance because that happens to me quite fequently.
Thanks,
Sundance

REPLY
@sundance6

Karena, I understand a really feel for you. I have followed This Mayo Thread or whatever it is called now for several months now looking for help myself. Last July I came down with what I still feel I Lyme Disease. But after chasing it around with incompetint doctors in my state, New Mexico, rated last in the country, no one would give me an exact diagnoses.
So I have reseached it and many thinigs that fall close to it. Chronic Fatugue, West Nile Virus, Fybromyalgia, Lupus and many others. Lady Gaga is the Leader in the Fybromyalgia right now. They all have very similiar triats.
One of the most comon I have found is REST, REST& MORE REST!. I know that my doctors and I are masking many of my problems or hurts and soreness with certain medications that allow me to conduct a somewhat normal everyday live. But other than me skipping a med at a certain time that will put me down as you describe is the not getting rest. I am 72 and have been an active hiker, fisherman, skier, played golf for 65 year and many other things. I tried playing 9 holes of golf the other day. I was down for a week. Maybe I got off track a bit. What I am trying to say is you can't live life as you normally have. You have to cut back at least for now and watch what you do. Plan your live around your work and social schedule. That may sound harsh but that is the only way to address what you have. I am self employed and run my own business. I have to plan the days so I know when to rest the day before and hope I wake up feeling ok. There are days when I don't but I go ahead and see my customer, which can take 2 -6 hours. When I come home I usually go stright to bed. Last Thursday I had to travel 600 miles round trip the same day. I slept just under 30 hours this weekend and just got up from a two hour nap on Monday.
Sorry for sounding like a lecture but you have to go through it. It dosen't seem to want to go away from us! By the way where did you here about Othorstatic Intolorance because that happens to me quite fequently.
Thanks,
Sundance

Jump to this post

Good Morning,
I am so sorry you have not been able to get a definitive diagnosis on what is going on with you.
I am not in the medical field in any way, but with all your outdoor activities, you MIGHT have been bitten by something causing these symptoms.
However, my concern is that some of the things you mentioned, with which I am familiar, can cause long term issues if not dealt with.
Fibro and Chronic Fatigue will not cause permanent damage if not medicated, but Lupus will.
If possible, I would certainly continue to pursue finding out what is going on so that you can receive the appropriate treatment in order to prevent any long term issues.
I know what you said about doctors in New Mexico. Is it possible to go outside New Mexico to one of the states???

I wish you good health!
Ronnie (GRANDMAr)

REPLY

GRANDMAr, Thanks for the Good wishes. Lyme Disease has always been my thought as to what is wrong with me. A good friend has it. The Professional Golfer Johnny Walker has it and many others. There is a whole group and pages on the web of like people. Much of the problem is that if you don't ID it early it is almost impossible to indetify it, unless you have countless amount of $$$ and can go placeses that have the test that can. As I had said to the young lady they all seem to have many of the same symptoms with no cures. There was a Mayo Podcast below her Thread yesterday about Fybromyalgia. It did the same dance around it that everybody dose! There are no answers! There are no cures! tHEY DON'T KNOW WHERE IT CAME FROM! The only thing I have found is to make myself comfortable with the pain I experience! If that means taking certain medications, I will!
As I said in my post, REST IIS THE MOST CRITICAL! That is also what the Podcast said. It speaks about not straining yourself! BUT MY QUESTION BACK TO THEM IS, AM I SUPPOSED TO LIVE IN A CAVE OR A CONVENT? I STILL WANT TO LIVE LIFE! IIt's the old Adadge, IF YOU PLAY, YOU PAY!. And those of us with late stages of Lyme, Chronic Fatigue, Fybromyalgia, Lupus and whatever else like these are comon must understand. It's alll very simple, we have to change the way we live our LIFE and ENJOY!
THANKS,
SUNDANCE

REPLY

@sundance6 Welcome to connect we can't dx but let others know what helps us. You are so right with unknown disease Dr,s don't have answers to I've had fibro for 30+yrs no answers known but we have to help ourselves I use heat,ice,Tens Unit , Magnesium more then normal people that helps When I overdue next day I can't get out of bed . I have O.A which Dr gave me Meloxican but this doesn't help fibro Be your own advocate you know what helps your body better so fibro like do many other dis-ease is a guessing game

REPLY
@grandmar

@karina77
Welcome to Connect.
I am so sorry that such a young person has to deal with so much, but you have your entire life ahead of you so it is important to know how to deal with your conditions, other people and your rights.
I am NOT in the medical field and I have NOT been a patient at any Mayo Clinic(s).
I have, however, been a principal and a supervisor of Special Education.
Since you are only 17, I might assume that these physical illnesses have been 'going' on for some time and has impacted your education.
Have you ever been given a "504 ACCOMMODATION PLAN" or an "IEP" (Individual Education Program)? Or, have you been 'diagnosed' as HANDICAPPED or having a HANDICAPPED CONDITION while you were a student in school (or after, if you graduated)?
I ask because you made mention if the Mayo Clinic could make a list of accommodations.
I also ask you this because if you have had any of the above, you are covered under the Federal Law for Disabled People.
Among other rites, you cannot be refused a job because of your handicap, assuming you can perform the job when hired.
And, you cannot be fired because of your handicapped condition should you develop one during your tenure at a job.
Now, this is very basic information and you could look up all the specifications.
All that being said, I am NOT familiar with what the law says if you are no longer able to perform the duties of the job you were hired to do.
I do not know if the hiring facility must offer you another position.
I just dealt with educational impacts.
In addition, I've been out of the field for 5 years so I don't know if there have been any changes. I doubt it.

Now, as far as working and money.
You MIGHT be eligable for Disability (SSI).
For that, you would have to apply.
You can find information for that on the Social Security Administration web site.
If you go this route, just make sure you have all your paperwork available.
The more documentation (regarding your illnesses) you have, the better.
This can include, but not limited to doctor reports, work evaluations, school reports, etc. Anything that contributes to enhancing your claims.
This process can take several months and that is just to find out if you have been accepted or denied. This does not include the process of fighting if you are denied.
As a minor, I am pretty sure you will have to get one of your parents (or LEGAL guardian) to initiate the above.

In the meanwhile, as far as work is concerned, there are many jobs that can be done remotely from home.
You might want to look into such jobs.
This way, on days you are not feeling well, you might be able to do it from bed. Or, if it is the type of job where you have to have a certain amount of work done in a given time, you can work at your own speed.

I know this is long. I tend to write on and on.
I DO hope this helps you with your quest.
Feel free to contact me if I can be of further assistance.

Wishing you LOTS OF LUCK and GOOD HEALTH!
Ronnie (GRANDMAr)

Jump to this post

Hi! I honestly appreciate all your helping and just taking the time to listen and share with me information that I know will help me! I will definitely talk this over with my parents! I have an IEP but I am dropping that because I honestly don’t need it. We have been looking into switching my IEP to a 504!

REPLY
@sundance6

Karena, I understand a really feel for you. I have followed This Mayo Thread or whatever it is called now for several months now looking for help myself. Last July I came down with what I still feel I Lyme Disease. But after chasing it around with incompetint doctors in my state, New Mexico, rated last in the country, no one would give me an exact diagnoses.
So I have reseached it and many thinigs that fall close to it. Chronic Fatugue, West Nile Virus, Fybromyalgia, Lupus and many others. Lady Gaga is the Leader in the Fybromyalgia right now. They all have very similiar triats.
One of the most comon I have found is REST, REST& MORE REST!. I know that my doctors and I are masking many of my problems or hurts and soreness with certain medications that allow me to conduct a somewhat normal everyday live. But other than me skipping a med at a certain time that will put me down as you describe is the not getting rest. I am 72 and have been an active hiker, fisherman, skier, played golf for 65 year and many other things. I tried playing 9 holes of golf the other day. I was down for a week. Maybe I got off track a bit. What I am trying to say is you can't live life as you normally have. You have to cut back at least for now and watch what you do. Plan your live around your work and social schedule. That may sound harsh but that is the only way to address what you have. I am self employed and run my own business. I have to plan the days so I know when to rest the day before and hope I wake up feeling ok. There are days when I don't but I go ahead and see my customer, which can take 2 -6 hours. When I come home I usually go stright to bed. Last Thursday I had to travel 600 miles round trip the same day. I slept just under 30 hours this weekend and just got up from a two hour nap on Monday.
Sorry for sounding like a lecture but you have to go through it. It dosen't seem to want to go away from us! By the way where did you here about Othorstatic Intolorance because that happens to me quite fequently.
Thanks,
Sundance

Jump to this post

Hi! I honestly appreciate you sharing your story with me! It means a lot to me! It most definitely is something very difficult to cope with! Whether it sounded like a lecture or not! It was helpful! Thank you! I heard about Orthostatic Intolerance from my POTS specialist-Dr.Fischer Mayo Clinic Rochester!

REPLY
@contentandwell

@karina77 I had no idea what Orthostatic Intolerance is so I just googled it. Are you being treated for it? It sounds as if there are some possible treatments. I hope you have a very good doctor who is familiar with this condition and can help you, if not then try to find another. What type of doctor treats this?

Also, do you have episodes, or is it chronic? It sounds as if you have episodes, and it says those pass quickly. Would it be possible at work to go to a backroom and rest for a brief period of time? When I was young I had horrible migraines and the secretary set up some armless chairs in a row in the coffee room for me to lie down for a short period. With a migraine that didn't really help much, but might it for your condition?

Other than that, I think @grandmar has some great suggestions. I hope you can find some methods or medications that will help with this, particularly since you have a lifetime ahead of you. Let us know how things work out for you.
JK

Jump to this post

Hi! I met with a POTS specialist at the Mayo Clinic Rochester! I met with Dr. Fischer, he was absolutely incredible, I am so thankful that I got the opportunity to meet with him! He spent nearly 2 hours with me! After reading all that you guys have commented, I spoke with my manager and we worked out some accommodations for work! I get an extra 10min break! I was originally put on midodrine and fludrocortisone! But my doctor dropped both of those because the side affects made me feel a lot sicker than I already feel! Thanks for your support! It’s so kind of you😊

REPLY
@lioness

Karina77 I really can't add anymore then what @grandmar. @contentandwell said except how old where you when this started,?I may have missed this but keep records of when it started and symptoms not only see a specialist but social security it maybe necessary to see a lawyer also since your still a minor .Best to you.

Jump to this post

Thank you so much! I appreciate your help and advice! I will definitely speak with my parents about this!

Liked by lioness

REPLY

Karina you are such a Wonderful Spirit for your age. Many young people choose drugs or other avenues. As someone else said on this thread you have to be your own advacate! As you did with your doctor at the Mayo sometimes Special people come along when you need them. Hang in there and keep us posted. Once you understand the issues you can better work them out. And that works in reverse also. I have learned just talking to you and others on this thread. You are never to old to alwasy learn!
Thanks,
Sundance

REPLY
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