Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 My Rheumy and my employer have been going back and forth for awhile on adjusting my job duties (family practice nurse) for a few months while doing MTX and the transition that will follow onto kineret. Today it was decided there was no way I could physically be in the office and not " jump i when needed " because this is simply not who I am. We had a nurse out today who has been filling in with the doc I normally work with (I guess I should mention I had already been put on desk duty in a room by myself to cut back on exposure risk) So since my beloved other half had no nurse today and the temp didn't know what he wanted I was asked to help.... I did, quite willingly, as I have been bored to tears in my little room.....oops....bad, bad idea. My boss decided that was it, final straw...effictive immediatly your going home....much to my husbands delight and my dismay I am now out on STD for as long as my doc feels necessary. Everyone tells me this is a good thing and I should be happy and just rest....I don't want to.....I do not want to admit I can't work....I do not want to admit I am sick.... On a logical level I get this and as a medical profesional I know what I would tell a patient but this is not who I am, it is not what I want. Someone please tell me what exactly I am suposed to do with myself all day. I can't be the only person to feel this was (God I hope not anyway, but then again I have always been a rebel so maybe I am) Thanks for listening ya'll.... I feel better just getting it off my chest while having a good cry. ~ Kimberlee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011    Kimberlee The fallowing is my feelings on your feelings about work and self so sit down grab a box of tissues and get ready.  â€I have been bored to tears in my little room.....oops....bad, bad idea. "  It is much worse when stuck in bed with a major flair so think about it (tack is not my cup of tea sorry)  " ....much to my husbands delight and my dismay I am now out on STD for as long as my doc feels necessary. " Good as it is some thing you would not do tell forced to and still only as you kicked and screamed no not me I can deal with it.  I do not want to admit I can't work....  Well tell me who dose I sure as hell did not want to and still to this day have dreams of being able To go back to work yet that is not a fact of life in the real world.  I do not want to admit I am sick....  AW the old but I am not sick it’s just like a cold or something I will get over it denial. Well if that's the case tell us all when did they find the cure or the med that gave a guarantee remission? face it like it or not you have an illness and there is no cure it is also a life long illness to boot with good days and bad days but most of the meds that give us good days also lower our auto immune systems and one of the best places to get some ting is a doctors office or a hospital and being in a room by your self is not good enough as them nastys still like to float around in the air threw the heat and air systems and on other peoples clothing.The  Redneck    On a logical level I get this and as a medical professional I know what I would tell a patient but this is not who I am, it is not what I want.   Starting from the back on this one I would like you to tell me who in there right mind would ask for this? ya no one that’s what I thought. Now just like any one in your profession the time has come for you to take your own advice. You have been giving it out for a long time now, now its time to live your own words. Just like a parent to a child you can not do one thing and tell them to do some thing other then you would do your self. Remember what’s right is not always easy. we also have a doctor here who has stills and no longer works and a few other nurse also so your not alone but the feelings are no alone to your field they are normal people feelings as no one wants to admit there sick or can not work any more when there life is just really starting to fall into place. Heck for my self my kids were almost grown being 12 and 17. I was making the most I had in my life every thing of the American dream I had and then wamo stills came a knocking and would not just go away but my American dream did and now one ex wife later many missed paychecks and living on SSDI with a second marriage under my belt I found out I never lost the American dream no I only forgot that it needs adjusting every now and then as life go's on and that is the part every one forgets to tell us as we grow up and start that dream.  so yes its not easy no its not nice or any of that but let me tell you it dose not mean every thing ends it only means time to adjust and learn a new way of living that dream.  Sorry if I sounded ruff but I also believe sugar coating it dose no one any good. Hugs Marty G       " I am having an out of money experience. " " No man's life, liberty, or property is safe while the legislature is in session. " ...............................Mark Twain (1866) To learn more about Stills Disease or to make a tax deductible donation:  http://www.stillsdisease.org/stills_info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Well put Marty ________________________________ To: Stillsdisease Sent: Tue, March 8, 2011 11:58:51 AM Subject: Re: Short term disability : (     Kimberlee The fallowing is my feelings on your feelings about work and self so sit down grab a box of tissues and get ready.  â€I have been bored to tears in my little room.....oops....bad, bad idea. "  It is much worse when stuck in bed with a major flair so think about it (tack is not my cup of tea sorry)  " ....much to my husbands delight and my dismay I am now out on STD for as long as my doc feels necessary. " Good as it is some thing you would not do tell forced to and still only as you kicked and screamed no not me I can deal with it.  I do not want to admit I can't work....  Well tell me who dose I sure as hell did not want to and still to this day have dreams of being able To go back to work yet that is not a fact of life in the real world.  I do not want to admit I am sick....  AW the old but I am not sick it’s just like a cold or something I will get over it denial. Well if that's the case tell us all when did they find the cure or the med that gave a guarantee remission? face it like it or not you have an illness and there is no cure it is also a life long illness to boot with good days and bad days but most of the meds that give us good days also lower our auto immune systems and one of the best places to get some ting is a doctors office or a hospital and being in a room by your self is not good enough as them nastys still like to float around in the air threw the heat and air systems and on other peoples clothing.The  Redneck    On a logical level I get this and as a medical professional I know what I would tell a patient but this is not who I am, it is not what I want.   Starting from the back on this one I would like you to tell me who in there right mind would ask for this? ya no one that’s what I thought. Now just like any one in your profession the time has come for you to take your own advice. You have been giving it out for a long time now, now its time to live your own words. Just like a parent to a child you can not do one thing and tell them to do some thing other then you would do your self. Remember what’s right is not always easy. we also have a doctor here who has stills and no longer works and a few other nurse also so your not alone but the feelings are no alone to your field they are normal people feelings as no one wants to admit there sick or can not work any more when there life is just really starting to fall into place. Heck for my self my kids were almost grown being 12 and 17. I was making the most I had in my life every thing of the American dream I had and then wamo stills came a knocking and would not just go away but my American dream did and now one ex wife later many missed paychecks and living on SSDI with a second marriage under my belt I found out I never lost the American dream no I only forgot that it needs adjusting every now and then as life go's on and that is the part every one forgets to tell us as we grow up and start that dream.  so yes its not easy no its not nice or any of that but let me tell you it dose not mean every thing ends it only means time to adjust and learn a new way of living that dream.  Sorry if I sounded ruff but I also believe sugar coating it dose no one any good. Hugs Marty G       " I am having an out of money experience. " " No man's life, liberty, or property is safe while the legislature is in session. " ...............................Mark Twain (1866) To learn more about Stills Disease or to make a tax deductible donation:  http://www.stillsdisease.org/stills_info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Marty,  You are completly correct and I needed to hear every bit of that. After I sent my message I decided to " take my own advice " and for the first time in a weekday I took my pain meds during a weeday, because I needed them. Then I went to bed and took a well needed nap.Something that I often dream of at work and it was wonderful.  I woke up and read your message and it was exactly what I needed to hear I needed someone to be brutaly honest with me (everyone around here is treating me like a china doll so I like that you " tore in to me some " )  I am a stubborn texan and need to " cowboy up " and face the reality of all of this instead of hiding behind my career when the reality is that I am just scared to admit that I am sick. I can say the words, but having a hard time truly accepting it and what it means.  Are there any books out there I can read (I couldn't find any on amazon) ? I have been so focused on finding a diagnosis for years, I guess I never thought about what I would do when I got an answer.  I'm still a little irritated that hubby says no Nascar race next month (I have not missed a race since TMS was built) but I do agree with him the last couple years I ended up coming home before the race was over anyway. My daddy says he will not go either and we will just put the RV in his driveway and pretend we are there.  So If I get on my pitty party kick again, please feel free to call me on it as I learn to accept this and adjust to my " new life "   I am very luck my husband is a saint (we were married about 6 months after I got sick) I tried to give him an out but he wouldn't take it. My daughters Tori (will be 20 next month) goes to college nearby and now stays at home more than at her dorm. (17) graduates this year and decided not to go to CU as planned but also go to a local school (i'm in the DFW area so there are LOTS of schools in a 2 hr radius)  Again thank you for telling me like it is, It was just what I needed to hear and since my daddy is scared he won't set me straight right now and he is the only one who ever has.   Again Thank you so much it means more to me that you know  ~Kimberlee  Subject: Re: Short term disability : ( To: Stillsdisease Date: Tuesday, March 8, 2011, 7:58 PM     Kimberlee The fallowing is my feelings on your feelings about work and self so sit down grab a box of tissues and get ready.  â€I have been bored to tears in my little room.....oops....bad, bad idea. "  It is much worse when stuck in bed with a major flair so think about it (tack is not my cup of tea sorry)  " ....much to my husbands delight and my dismay I am now out on STD for as long as my doc feels necessary. " Good as it is some thing you would not do tell forced to and still only as you kicked and screamed no not me I can deal with it.  I do not want to admit I can't work....  Well tell me who dose I sure as hell did not want to and still to this day have dreams of being able To go back to work yet that is not a fact of life in the real world.  I do not want to admit I am sick....  AW the old but I am not sick it’s just like a cold or something I will get over it denial. Well if that's the case tell us all when did they find the cure or the med that gave a guarantee remission? face it like it or not you have an illness and there is no cure it is also a life long illness to boot with good days and bad days but most of the meds that give us good days also lower our auto immune systems and one of the best places to get some ting is a doctors office or a hospital and being in a room by your self is not good enough as them nastys still like to float around in the air threw the heat and air systems and on other peoples clothing.The  Redneck    .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Hi Kimberlee It is so hard to adjust to the Stills life I agree. In fact I have been told that it is like a bereavement for the loss of you. I have had so many tears because I am not the Joan I was but at the end of the day we have no choice but to live with what we have. I must admit when I see someone really fit and saying what they are going to do for their next venture I still feel so jealous not because I don't want them to have fun but purely selfish that I can't do it I have tried to stop myself but it still happens and then I feel guilty. I can't offer any ideas as to what you can do all day I guess you will have to ferret anything that interests you and then see if you can manage to do it. Not much help I know Good luck Joan U.K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Ohhhhh Yeahhhhhhhhhhhhh........I am right with you sister! I too am Type A and a Licensed Medical Profession (Physical Therapist Assistant)....I am a little over six years from onset of Stills.....early-on it was so difficult for me to accept that I could no longer do the things i used to do...work, play, etc.....it was difficult to simply accept that i was sick and probably would continue to stay that way! And, yes, i know what i would tell my patients....etc. etc. etc. I went through the ENTIRE grieving process....every step...some repeatedly...i kept in touch with folks here.....i keep my mind busy...busy...busy! I journal quite a bit....that helps more than i realized! The toughest thing for me was reaching acceptance and realizing, as i mentioned above, that this was most likely going to be with me for life....you see, before Stills, when we got sick or injured there was generally a definitive recovery time after which we went to life as " normal. " Welllllllll, that was easy next to this......oh yeah....absolutely one day at a time works for me as well.......I don't think i have probably helped much unless to let you know that you are not alone!!!!!!!!!!!! God Bless! Larry B. NC Quote Link to comment Share on other sites More sharing options...
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