You asked how long I taught after the diagnosis? The truth is I had symptoms long before I was diagnosed. And I was the type that "keeping myself busy" helped me not think about it. When I had the diagnosis in 1993, I took a short break and returned to teach 10 more years. At that time, I had more good days than bad. When it began to progress to where I had more bad days than good...that was my signal to retire. Age had a lot to do with it also as I was able to draw S.S. and get on Medicare. My husband's job kept me busy after I retired - helping him. I did not get paid but great satisfaction in doing things I enjoyed without the pressure of a "job."
thanks for your feedback and honesty always, always.
Faye said:
You asked how long I taught after the diagnosis? The truth is I had symptoms long before I was diagnosed. And I was the type that "keeping myself busy" helped me not think about it. When I had the diagnosis in 1993, I took a short break and returned to teach 10 more years. At that time, I had more good days than bad. When it began to progress to where I had more bad days than good...that was my signal to retire. Age had a lot to do with it also as I was able to draw S.S. and get on Medicare. My husband's job kept me busy after I retired - helping him. I did not get paid but great satisfaction in doing things I enjoyed without the pressure of a "job."
I continued to work when I was first diagnosed for about two years and then experienced back to back health issues that required me to take a break, now almost three years later I'm still trying to get things back together. While I was working after diagnosis I did start to miss days and my employers were not so understanding. They liked me as an individual but had to have someone that could consistently be at work so it was best for me to take a break.
I am on short term right now ,go back to doctor tomorrow to extend through maybe september I am concerned about my meds conversing ,the lupus, I so much want to go back to work this gets so depressing at times, brain fog, pains aches, fatigue I ask myself why me what did I do oh Lord help me to be strong where I am weak at, I am so use to being busy, if granted the chance to go back to work have my fears, people treat you different when you have been sick,I just dont understand,I try to remain to be strong it is hard sometimes .
Yes lia, i was working up until it was just to painful to hold everything and to stand for a long period of time ( i was a waitress) , and not to mention the noise !!! it was hard - not able to do what i loved doing for about 15 t 20 years . But hay that's what happens for some . Am just Thankful that i went staight to the doctor and they caught it in the early stage !!! Some days i wish that i could go back to work , but that's not going to happen for me - I can't hold things in my hands , an can't sit for long periods of time either , along with having to rest through out the day . So far am okay , just wish that there was some kind of work i could do it get boring sitting at home sometimes and needing help doing things that you i use to do for myself .. Am learning how to deal with it , Glad that my family is giving me the support of being there to help ......Beverly L.
did you have to apply for ssi, i sent you my e-mail address are you ok?
Beverly L. said:
Yes lia, i was working up until it was just to painful to hold everything and to stand for a long period of time ( i was a waitress) , and not to mention the noise !!! it was hard - not able to do what i loved doing for about 15 t 20 years . But hay that's what happens for some . Am just Thankful that i went staight to the doctor and they caught it in the early stage !!! Some days i wish that i could go back to work , but that's not going to happen for me - I can't hold things in my hands , an can't sit for long periods of time either , along with having to rest through out the day . So far am okay , just wish that there was some kind of work i could do it get boring sitting at home sometimes and needing help doing things that you i use to do for myself .. Am learning how to deal with it , Glad that my family is giving me the support of being there to help ......Beverly L.
Lia Nuriddin, I have the same problem, and I was diagnosed in 2008, I cant stand to long, or sit too long, and I go to my room at family gatherings, but my family understand that the noise is something I cant stand for very long. I hope things work our for you. Many blessings and hugs.
I was working a very physical job when I was diagnosed last year. It got very difficult for me. At times I had no grip and couldn’t hold things and would drop merchandise and break it. I was so afraid the big bosses would see I couldn’t do the job and fire me. I have 3 children and am a single mom and I have no choice but to work or I will lose everything! Ii have changed jobs and work at an early learning center now and the hardest thing is getting up and down off the floor and being on my feet all day. Some days are better than others and the fatigue is hard. But I have to work and be ok. I can’t let my family or myself down.
Hi sorry , i've ben tied up with some personal business , yes i did filed for my ssi - it takes so long for them to make a desicion( it really don't make no sense ) . I was told to just keep going to the doctor and keep up with all your files , and to stay in contact with them as much as possible . Waiting will get on your nerves but don't give up .... Am doing okay just had some family matters . How re you doing ???hope thatyou are Pain free!!!!!! Beverly L.
lia nuriddin said:
did you have to apply for ssi, i sent you my e-mail address are you ok?
Beverly L. said:Yes lia, i was working up until it was just to painful to hold everything and to stand for a long period of time ( i was a waitress) , and not to mention the noise !!! it was hard - not able to do what i loved doing for about 15 t 20 years . But hay that's what happens for some . Am just Thankful that i went staight to the doctor and they caught it in the early stage !!! Some days i wish that i could go back to work , but that's not going to happen for me - I can't hold things in my hands , an can't sit for long periods of time either , along with having to rest through out the day . So far am okay , just wish that there was some kind of work i could do it get boring sitting at home sometimes and needing help doing things that you i use to do for myself .. Am learning how to deal with it , Glad that my family is giving me the support of being there to help ......Beverly L.
I am newly diagnosed, and I'm working right now. I get alot of ridicule for not working any overtime, and have been counseled about my 'excessive doctor's visits' and heard a co-worker tell another "limping is counter-productive". I've also heard, that they think I've 'slowed down alot'. Pain is a way of life each day, its time to weigh the Pros and Cons. Sacrificing pain and discomfort to a group that still expects more than I'm able to give. I'm taking it one day at a time, and my counselor has offered suggestions for vocational rehabilitation, and applying for SSD. Right now, I'm giving all my enenergy at work, and there's none left when I come home to my family.
Try applying for ADA accommodation in the interim waiting for SSD, so your work schedule can be legally changed without affecting your pay. Not many people know about ADA accommodation it appears, the benefits are great, we can still work at regular pay with a modified schedule. For met that is great, as a mom.
sunrisetrisha said:
I am newly diagnosed, and I'm working right now. I get alot of ridicule for not working any overtime, and have been counseled about my 'excessive doctor's visits' and heard a co-worker tell another "limping is counter-productive". I've also heard, that they think I've 'slowed down alot'. Pain is a way of life each day, its time to weigh the Pros and Cons. Sacrificing pain and discomfort to a group that still expects more than I'm able to give. I'm taking it one day at a time, and my counselor has offered suggestions for vocational rehabilitation, and applying for SSD. Right now, I'm giving all my enenergy at work, and there's none left when I come home to my family.
That is great advice! Where do we apply for that?
Like yourself I was dz after having my daughter, I was working and am still working 8 years later. I ocassionally have time off work with flares, but my condition is managed preety well with drugs and looking after myself. I hope to continue working till retirement. I have all the usual bills to pay, but I think it would be soul destroying for me to lose my job because of Lupus, I love my job and will fight to continue to work, lupus has taken a lot away from me and I am determined to keep this piece of my life. I am heartened by the postings from older lupies who have managed their careers through Lupus, during a time (probably) when there was even less understanding and support (i.e. no on-line notice boards to gain strenght from).
Davina
Go to your HR director or designee and request your companies documents on ADA or just go to this website http://www.ada.gov/ and fill out the paperwork. Get it in early, because some jobs need time to adjust your schedule and other logistics..
You're Welcome. We are all here to share.
sunrisetrisha said:
That is great advice! Where do we apply for that?
is this some fornancial resources like ssi,all this si new to me so i dont know what type of resource is this?
Hi unsureandscated I am an elementary teacher and wondered hoe my schedule be modified. I went to thr website you referred Lia to. I was wanting to have a modified schedule with reduced hour. working 3 out of five days a week with an assistant iny classroom. I was not clear if they would cover something likr that anf still allow me full pay. Not sure but I plan on speaking with my principal this week.
No, ADA is for an adjusted workload or schedule at your job.
The process differs in school districts. But find out if your HR has their own forms. In my school district, I went to HR requested the ADA forms, your doctor must fill out the forms too, filled them out and suggested my work schedule, including one period off, close proximity to the bathroom, reduced class size. My schedule works because, I work in a High School and have multiple classes. Write out your accommodations before you get there, so the Principal is able to read and see the accommodations.
You might want to offer other options, be flexible, if the Principal says your accommodations are not feasible, don't give up. Continue to negotiate with the Principal, according to ADA, the employee and the employer must come to an agreement for ADA to work. In elementary, it might be easier for you to have an out of classroom position, coordinator or something like that. Don't forget to let HR know you are requesting ADA and will speak to your Principal. The HR will be able to modify your schedule.
The Principal is needed to agree that your accommodations can be provided in the school. It is a collaborative relationship. If the Principal is not able to accommodate you then HR will step in and assist. But, keep the negotiations very diplomatic and open.
My accommodations did not include a shorter work week. ADA requires you are still eligible to perform the job you were hired. So, if you ask for days off that are not part of your job description, then it will not be granted. You might want to ask for less classes, if possible, or an out of classroom position meeting your needs. ADA does not require an employer to change your job description, so be careful. The person in the classroom might be ok.
Let me know how it works out for you.
Thank you this was so helpful. i will let you know how things go. I don’t see my Rhuemy until next month. I will get thr forms and write down those accomodation I need and why.
Good Luck!! Keep me posted.