Guest guest Posted June 25, 2002 Report Share Posted June 25, 2002 Here is a post from an old member of our group. As you can see, he needs info from our members, so any help you can give, just might end up helping us in the long run one day. Please send any responses to me and I will gladly forward them on to him. Thank you in advance, >>>>>>>>>>>>>>>>>>>>>>>>>>>>>> Hi Long time no hear....hope your doing Ok. I'm in remission, and have been for quite awhile...well not exactly was on and off Pred but I don't really count that. It took only small doses to get it under control. Sore right ear. I am just about to finish a 10 month program at College in Vancouver. I will get my certificate as a Career Development Practitioner (employment counsellor). It's been a long haul but only 2 more classes and I'm done....yeaaaaaaaaaa.. I wanted to know how those in the group who are working are coping with RP...has there been any accomodations etc from the employer and so on. I know the site contains our stories about how we finally recognized it and what meds we are on, but I wanted to know about coping with RP and how one goes about working, if they are, with it. If you could provide me with any info it would be greatly appreciated. I hope your doing Ok and that life is treating you the way it should....stay in touch. Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2002 Report Share Posted June 25, 2002 This is my reply to Mike Hi Mike I have RP and I am still working. However, I am finding it very difficult since I am slowing down quickly. RP isn't the only thing I have, but I have notice being on the Pred and the metho that a lot of the pain symptoms I was having are not there. This is great, but I am so dang tired this has made it very difficult getting up in the mornings. It takes me approx. 45-min to drive to and from work every day. This isn't to bad. Then I am at work approx. 55 hours a week. That means I have to leave my home at 6am to get to work before 7am and I leave work at 5pm and get home around 6pm. Makes for a very long day...both good and bad. Now I also have Fibro...as well as Osteoarthritis and am close to needing a hip replacement. Compounded with this and RP I am surprised myself I am still working. It is very painful and difficult for me and for the majority of those I work with for many years they had no idea I was in pain. To be honest I doubt if they even realize today how much pain I am in...One woman in the office made it very difficult for me when I told her about the RP. She more or less thought I made it up and since I wasn't screaming in pain on the floor there was noting wrong with me. I talked to my Rheumy about this....wrote a statement regarding my condition and RP so that it was on file incase the Federal Family Medical Leave would have to be used for me. My doctor also wrote a letter to the VP explaining my condion and that any added stress was very bad for me. Now I'm not sure if all of this has made them aware just how bad this RP can be or if they are scared I will head to the EEO and/or Labor board for some of their actions...they are not more or less not saying a word to me. Personally I don't think they reall understand nor do I think they really care. I live in Florida. It's a " right to work " state and employees can be fired or let go for no reason at all. I live in fear of loosing my job eavery day and no one gives a dame... Sharyn > > > Date: 2002/06/25 Tue AM 07:31:01 EDT > To: <Rpolychondritis >, > <RPSupportandAwarenessFoundation > > Subject: Fw: working with RP > > Here is a post from an old member of our group. As you can see, he needs info from our members, so any help you can give, just might end up helping us in the long run one day. > Please send any responses to me and I will gladly forward them on to him. > Thank you in advance, > > >>>>>>>>>>>>>>>>>>>>>>>>>>>>>> > > Hi > Long time no hear....hope your doing Ok. I'm in remission, and have been for quite awhile...well not exactly was on and off Pred but I don't really count that. It took only small doses to get it under control. Sore right ear. I am just about to finish a 10 month program at College in Vancouver. I will get my certificate as a Career Development Practitioner (employment counsellor). It's been a long haul but only 2 more classes and I'm done....yeaaaaaaaaaa.. > I wanted to know how those in the group who are working are coping with RP...has there been any accomodations etc from the employer and so on. I know the site contains our stories about how we finally recognized it and what meds we are on, but I wanted to know about coping with RP and how one goes about working, if they are, with it. If you could provide me with any info it would be greatly appreciated. I hope your doing Ok and that life is treating you the way it should....stay in touch. > Mike > > Here is a post from an old member of our group. As you can see, he needs info from our members, so any help you can give, just might end up helping us in the long run one day. Please send any responses to me and I will gladly forward them on to him. Thank you in advance, >>>>>>>>>>>>>>>>>>>>>>>>>>>>>> Hi Long time no hear....hope your doing Ok. I'm in remission, and have been for quite awhile...well not exactly was on and off Pred but I don't really count that. It took only small doses to get it under control. Sore right ear. I am just about to finish a 10 month program at College in Vancouver. I will get my certificate as a Career Development Practitioner (employment counsellor). It's been a long haul but only 2 more classes and I'm done....yeaaaaaaaaaa.. I wanted to know how those in the group who are working are coping with RP...has there been any accomodations etc from the employer and so on. I know the site contains our stories about how we finally recognized it and what meds we are on, but I wanted to know about coping with RP and how one goes about working, if they are, with it. If you could provide me with any info it would be greatly appreciated. I hope your doing Ok and that life is treating you the way it should....stay in touch. Mike DISCLAIMER!! WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2002 Report Share Posted June 27, 2002 Hi Mike, Had to reply your question. I'm the one that lives up Island from you. I also work in a Carreer Counselling office, but I have one of the lower stress jobs, I'm not a counsellor. My employer is really good. We have good medical and good sick leave policy where you have to miss 60 consecutive days before they can replace you. So far I haven't missed one, but I haven't had any major flares yet. I find that the more I enjoy my job the better my RP is. Also I get as much rest as possible, whenever possible. The docs told me that I wouldn't be able to work full time again but I am. I guess it all depends on the job and how much you take home. I've never held a position, until now, that I didn't have to take tons of stuff home. Interesting choice of careers, fairly stressful, but not to bad if you work for a good org. and don't take things too personally. One thing is there's never a dull day. Things are getting interesting in that line of work with all the gov't changes thanks to Gordon!!! It's an ever changing and challenging occupation but also very rewarding. To see someone's face when they get a job, or funding for school that they've tried so hard for, WOW!! Nothing greater than that!! Hope that answers a few questions. By the way they knew of my health condition before hiring me too, I was one of their clients. Take care and hope you find work, but not overload, soon Elaine M Fw: working with RP Here is a post from an old member of our group. As you can see, he needs info from our members, so any help you can give, just might end up helping us in the long run one day. Please send any responses to me and I will gladly forward them on to him. Thank you in advance, >>>>>>>>>>>>>>>>>>>>>>>>>>>>>> Hi Long time no hear....hope your doing Ok. I'm in remission, and have been for quite awhile...well not exactly was on and off Pred but I don't really count that. It took only small doses to get it under control. Sore right ear. I am just about to finish a 10 month program at College in Vancouver. I will get my certificate as a Career Development Practitioner (employment counsellor). It's been a long haul but only 2 more classes and I'm done....yeaaaaaaaaaa.. I wanted to know how those in the group who are working are coping with RP...has there been any accomodations etc from the employer and so on. I know the site contains our stories about how we finally recognized it and what meds we are on, but I wanted to know about coping with RP and how one goes about working, if they are, with it. If you could provide me with any info it would be greatly appreciated. I hope your doing Ok and that life is treating you the way it should....stay in touch. MikeDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2002 Report Share Posted June 30, 2002 Hi All again, I sent Mike C one email from Liz on how she was dealing with working and RP, but must have missed the rest of them. So sorry about that. Mike's email addy is: m.cuvelier@... please write him directly with your answer to his questions so that he gets all emails on this subject. Remember, we might just help ourselves one day by doing this for him Thanks again and sorry you have to re-write anything you already posted again to him. Re: working with RP Thanks Much appreciated...it would be good to see all the people in the group contribute a note or letter of some kind explaining how they are dealing with the RP if they are working, and posted on the web site...it definitely could put a positve spin on this disease, to say we may have it, but its not going to run our lives. Just a thought..thanks again I appreciate it.. Mike I wanted to know how those in the group who are working are coping with RP...has there been any accomodations etc from the employer and so on. I know the site contains our stories about how we finally recognized it and what meds we are on, but I wanted to know about coping with RP and how one goes about working, if they are, with it. If you could provide me with any info it would be greatly appreciated. I hope your doing Ok and that life is treating you the way it should....stay in touch. Mike m.cuvelier@...http://www.neonetta.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Hi Mike I worked with RP and I was lucky with the pain I had. My bosses were great. I had back pain about 4-5 times and it got so bad that every 15-20 mins. I had to get up and walk around . I had so much trouble sitting for 10hrs. a nights , all I could do was to wiggle around in my chair. LOL Each time it lasted for 4-5 weeks and the pain was as bad as I had in the hospital when I was first dx with RP. I tried and begged for pain meds. but they said no. The rest of the time it didn't enterfere with my work. When I got into remisson I prayered that I would never be in that much pain again, that did happen so far. I got TM 3 1/2 yrs. and that was caused from my RP and I was driving for a job then. My TM came on slowly and I had to stop cuz I had trouble using my feet for the gas and brakes and plus my balance was getting bad and even walking was getting hard cuz I had to lift my legs to walk. I am now on SSI and may be here for a long while, only time will. I hope you can stay working and have a boss that is understanding. I hope this is some help to you. Take care and hope you are doing well. Sally Quote Link to comment Share on other sites More sharing options...
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