Guest guest Posted October 10, 2010 Report Share Posted October 10, 2010 This really isn't a weird post. Sarc has changed my life tremendously. It started 10 years ago when I woke up without the use of my right arm (The use and feeling slowly came back but only to about 60% strength and the feeling was replaced with pain) It started in my Nervous System but wasn't diagnosed until 4 years ago this next Feb. I turn 49 tomorrow (Columbus Day) mentally I feel 14 physically it changes day to day,. My pain level go from a 1-2 when they can control them to a 11 out of 10 when they can't. I'm a Chiropractor and before this started I was open 5-6 days a week 8-14 hours a day, Over the past 10 years it has gotten harder and harder to do what I used to. Between the inability to stand for lengths of time, the breathing problems, the severe Arthritis from the steroids (pain in the ankles, knees low back right arm, after a period of standing I get a knife like pain through my liver (or so it feels or spleen depending on day) I am not saying any of this for pity. I consider myself lucky because so many people are in much worse shape then I am. Just to show the change in my life. I now can only work 2 full days, 1 half day and a 2 hour day. I am constantly looking for what to do in the next half of my life, I hope to G-d your condition just gets better and better, If you one of the lucky ones that go into remission then do what you want but if your progressing then look for something to do that you don't have to do a lot of things that make you exert yourself or stand for long periods of time ie. nurse. There are thousands of things to do and a lot of volunteer work that needs to be done. If you need help tell us your interests, I'm sure one of us cam help you with what to do. G-d Bless Mitch B A little bit lost... This may sound like a weird post but I'm really lost as to what to do now. My symptoms are kind of settled at the moment, and I'm stuck in this weird limbo. I feel like I could be working or doing more, but I'm not sure what, and I still have limitations, due to lost vision and strength. I feel really confused as to what I do with life now, it has to be more than just being sick. Spending too much time at hospitals has tricked me into thinking I want to be a nurse - but i don't think I do. I'm working volunteering one day a week at the moment and studying for an Arts degree, but I'm just really lost. What do others do? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2010 Report Share Posted October 10, 2010 Thanks for your reponses. Especially important was what you said about standing - I guess when you have plenty of time to sit and rest you can trick yourself into thinking all is good, but I can't stand for very long at all. I also seem to be forgetting I'm numb down my left side - probably need to take that into consideration. I guess I'm getting used to the physical problems and thereofre feel like I could do more... i don't even know what my interests are anymore, I had to stop doing things I liked... as I said that's why I feel lost. > > This really isn't a weird post. Sarc has changed my life tremendously. It started 10 years ago when I woke up without the use of my right arm (The use and feeling slowly came back but only to about 60% strength and the feeling was replaced with pain) It started in my Nervous System but wasn't diagnosed until 4 years ago this next Feb. I turn 49 tomorrow (Columbus Day) mentally I feel 14 physically it changes day to day,. My pain level go from a 1-2 when they can control them to a 11 out of 10 when they can't. I'm a Chiropractor and before this started I was open 5-6 days a week 8-14 hours a day, Over the past 10 years it has gotten harder and harder to do what I used to. Between the inability to stand for lengths of time, the breathing problems, the severe Arthritis from the steroids (pain in the ankles, knees low back right arm, after a period of standing I get a knife like pain through my liver (or so it feels or spleen depending on day) I am not saying any of this for pity. I consider myself lucky because so many people are in much worse shape then I am. > Just to show the change in my life. I now can only work 2 full days, 1 half day and a 2 hour day. I am constantly looking for what to do in the next half of my life, > I hope to G-d your condition just gets better and better, If you one of the lucky ones that go into remission then do what you want but if your progressing then look for something to do that you don't have to do a lot of things that make you exert yourself or stand for long periods of time ie. nurse. There are thousands of things to do and a lot of volunteer work that needs to be done. If you need help tell us your interests, I'm sure one of us cam help you with what to do. > > > G-d Bless > > > Mitch B > > > > > > A little bit lost... > > > > > > This may sound like a weird post but I'm really lost as to what to do now. > > My symptoms are kind of settled at the moment, and I'm stuck in this weird limbo. I feel like I could be working or doing more, but I'm not sure what, and I still have limitations, due to lost vision and strength. > > I feel really confused as to what I do with life now, it has to be more than just being sick. Spending too much time at hospitals has tricked me into thinking I want to be a nurse - but i don't think I do. > > I'm working volunteering one day a week at the moment and studying for an Arts degree, but I'm just really lost. > > What do others do? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2010 Report Share Posted October 12, 2010 I think many of us can relate to what you're feeling right now, we've been there. One thing I will say is get your degree in something you can do sitting down, or not requiring you to be on your feet. There's a few of us nurses here, and I will let the others speak for themselves, but for me, I can no longer do nursing, I was a labor and delivery nurse and loved my work, but now can't walk well enough to do nursing anymore, I am limited to how long and how fast I can walk, so I can't do nursing. I've been running my own business ( Kay) out of my home, and that helps me feel useful, but if I could I would be back at the hospital working. OK I guess that's me two cents. Some times I still feel lost and think the same thing, that I should be doing more, but I get tired easy, so have to pace myself. I don't know after time I think you become aware of what you can do and what you can't do. hope that was helpful? MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) This may sound like a weird post but I'm really lost as to what to do now. My symptoms are kind of settled at the moment, and I'm stuck in this weird limbo. I feel like I could be working or doing more, but I'm not sure what, and I still have limitations, due to lost vision and strength. I feel really confused as to what I do with life now, it has to be more than just being sick. Spending too much time at hospitals has tricked me into thinking I want to be a nurse - but i don't think I do. I'm working volunteering one day a week at the moment and studying for an Arts degree, but I'm just really lost. What do others do? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2010 Report Share Posted October 13, 2010 I'm really worried about my capacity to keep working, which involves thinking and writing ... and SEEING. If the sarcoid gets into other areas of my brain, it could really screw things up. At least my work isn't physically demanding, that's something. I keep trying to think of different jobs I could do, but anything that isn't " mental " is physical, and that's probably not a good long term prospect either :/ Re/ pred, I've been having trouble with high blood sugars, definitely over the normal range (my daughter has type 1 diabetes, so I've borrowed one of her backup blood sugar metres) ... guess I'll need to see the GP about some Metformin or something. Has anyone else had this side effect from high doses of pred? Does it go away when you're off the steroids? Cheers, ------------------------------------------------------------ Cracking Codes and Cryptograms for Dummies http://tinyurl.com/CodesandCryptograms Word Searches for Dummies http://tinyurl.com/WordSearches Follow me on Facebook! http://www.facebook.com/pages/-Sutherland/149144697766 ------------------------------------------------------ > I think many of us can relate to what you're feeling right now, we've been there. One thing > I will say is get your degree in something you can do sitting down, or not requiring you to be on your feet. There's a few of us nurses here, and I will let the others speak for themselves, but for me, I can no longer do nursing, I was a labor and delivery nurse and loved my work, but now can't walk well enough to do nursing anymore, I am limited to how long and how fast I can walk, so I can't do nursing. I've been running my own business ( Kay) out of my home, and that helps me feel useful, but if I could I would be back at the hospital working. > OK I guess that's me two cents. Some times I still feel lost and think the same thing, that I should be doing more, but I get tired easy, so have to pace myself. I don't know after time I think you become aware of what you can do and what you can't do. > hope that was helpful? > > Marla > Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too > is just today:) > > > > > > > > This may sound like a weird post but I'm really lost as to what to do now. > > My symptoms are kind of settled at the moment, and I'm stuck in this weird limbo. I feel like I could be working or doing more, but I'm not sure what, and I still have limitations, due to lost vision and strength. > > I feel really confused as to what I do with life now, it has to be more than just being sick. Spending too much time at hospitals has tricked me into thinking I want to be a nurse - but i don't think I do. > > I'm working volunteering one day a week at the moment and studying for an Arts degree, but I'm just really lost. > > What do others do? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2010 Report Share Posted October 14, 2010 , It's a hard call, as I am always thinking of what I could do, thought about home health nursing, but then I would have to be somewhere on there time, and I never know if I'm going to have a good day or a bad day, and what if it's a bad day, do I call in sick? I am lucky that I can keep my license active in that I do work for a home health agency that sends in home care helpers, not CNA's and I do all the testing and certifications they need done, it's a small operation, so I don't work very much, and it's on my time, and they come to my house, so even if I don't feel good, I would still do it. I wish it would get bigger and I could get more hours, but don't think that will happen. I also think I told you I do a business I am able to do out of my home too, but have to look good for that, but no big deal if I reschedule, and I love doing. I was hoping to really make this business work and move up in the " ranks " but it's just too much work, can't do it. My husband just opened a business and want to help him out, but right now he seems to be doing OK with it. I need to learn Quick books, but now he tells me he might just hire a CPA to do most the work on Quick books. My Mom is leaving with me, and I hate going into my office and leaving her alone, although she doesn't mind, and is doing really well, she's 89 and I would like to spend time with her too. I see the hands of God working here. I wish I had a good answer for you, but I also wonder (for me) if I would have trouble with an outside job with my memory which sucks. As far as the diabetes goes, I never had trouble with that, and I was on Pred for 3 years, I got the moon face and general puffiness, gained weight, but no trouble with my blood sugars, and I'm not sure if it goes away, someone else will have to chime in on that one. Well as you can see, I'm trying to keep up with Rambling Rose again, so that's all for now. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) I'm really worried about my capacity to keep working, which involves thinking and writing ... and SEEING. If the sarcoid gets into other areas of my brain, it could really screw things up. At least my work isn't physically demanding, that's something. I keep trying to think of different jobs I could do, but anything that isn't " mental " is physical, and that's probably not a good long term prospect either :/ Re/ pred, I've been having trouble with high blood sugars, definitely over the normal range (my daughter has type 1 diabetes, so I've borrowed one of her backup blood sugar metres) ... guess I'll need to see the GP about some Metformin or something. Has anyone else had this side effect from high doses of pred? Does it go away when you're off the steroids? Cheers, ------------------------------------------------------------ Cracking Codes and Cryptograms for Dummies http://tinyurl.com/CodesandCryptograms Word Searches for Dummies http://tinyurl.com/WordSearches Follow me on Facebook! http://www.facebook.com/pages/-Sutherland/149144697766 ------------------------------------------------------ > I think many of us can relate to what you're feeling right now, we've been there. One thing > I will say is get your degree in something you can do sitting down, or not requiring you to be on your feet. There's a few of us nurses here, and I will let the others speak for themselves, but for me, I can no longer do nursing, I was a labor and delivery nurse and loved my work, but now can't walk well enough to do nursing anymore, I am limited to how long and how fast I can walk, so I can't do nursing. I've been running my own business ( Kay) out of my home, and that helps me feel useful, but if I could I would be back at the hospital working. > OK I guess that's me two cents. Some times I still feel lost and think the same thing, that I should be doing more, but I get tired easy, so have to pace myself. I don't know after time I think you become aware of what you can do and what you can't do. > hope that was helpful? > > Marla > Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too > is just today:) > > > > > > > > This may sound like a weird post but I'm really lost as to what to do now. > > My symptoms are kind of settled at the moment, and I'm stuck in this weird limbo. I feel like I could be working or doing more, but I'm not sure what, and I still have limitations, due to lost vision and strength. > > I feel really confused as to what I do with life now, it has to be more than just being sick. Spending too much time at hospitals has tricked me into thinking I want to be a nurse - but i don't think I do. > > I'm working volunteering one day a week at the moment and studying for an Arts degree, but I'm just really lost. > > What do others do? > > > > ------------------------------------ ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2010 Report Share Posted October 14, 2010 Rach, I apologize for the delay in answering your message. I know you have gotten some other responses. One of the difficult & frustrating factors in chronic illness is the losses we have to grieve & the adjustments we often have to make. I was forced to retire at age 55 after practicing 20 years as a certified nurse-midwife & 10 years as a labor & delivery nurse before that, along with some med-surg nursing. I had planned to work until about 70, perhaps just in the office if birthin' babies got too difficult. I then hoped to join the Peace Corps. When I had to quit working, I lost the career/vocation I loved, a big chunk of my identity, financial security, my house & most of my social life. The adjustments were difficult; I was often sad, resentful & downright furious! This wasn't how my life was supposed to go! But life goes on, even if you have to be dragged kicking & screaming along (that was me). I found this group, my family rallied around me, my church & some of my work friends continued to provide support, and I finally accepted my new reality. And you know what? It wasn't all bad! I've become closer to my kids & grandkids, I've learned to expand my view of the world & put my own struggles into perspective. Is it always okay? Nah, I still have times that I'm depressed & resentful, but I go with the flow & know that they will pass. I'm able to recognize that being a midwife, while a wonderful gift, wasn't all I was, and that I had other gifts to offer. You may be in that initial stage of shock, disbelief, some depression. Realize that most of us go through the stages of grief that are commonly associated with death--denial, anger, bargaining, depression & acceptance. There are other versions of this process, but the important thing to remember is that it is a process. There is no right or wrong way to navigate this experience, no timetable, and probably a need to do it more than once. Give yourself a little time to assimilate the changes in your life & the possible changes yet to come; be gentle with yourself. But get out in the world, stay in contact with good friends, look for new & positive influences and keep HOPE. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Mon, 11 Oct 2010 02:04:06 +0000> Subject: A little bit lost...> > This may sound like a weird post but I'm really lost as to what to do now.> > My symptoms are kind of settled at the moment, and I'm stuck in this weird limbo. I feel like I could be working or doing more, but I'm not sure what, and I still have limitations, due to lost vision and strength.> > I feel really confused as to what I do with life now, it has to be more than just being sick. Spending too much time at hospitals has tricked me into thinking I want to be a nurse - but i don't think I do.> > I'm working volunteering one day a week at the moment and studying for an Arts degree, but I'm just really lost.> > What do others do?> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2010 Report Share Posted October 14, 2010 Very well said Rose! MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) Rach, I apologize for the delay in answering your message. I know you have gotten some other responses. One of the difficult & frustrating factors in chronic illness is the losses we have to grieve & the adjustments we often have to make. I was forced to retire at age 55 after practicing 20 years as a certified nurse-midwife & 10 years as a labor & delivery nurse before that, along with some med-surg nursing. I had planned to work until about 70, perhaps just in the office if birthin' babies got too difficult. I then hoped to join the Peace Corps. When I had to quit working, I lost the career/vocation I loved, a big chunk of my identity, financial security, my house & most of my social life. The adjustments were difficult; I was often sad, resentful & downright furious! This wasn't how my life was supposed to go! But life goes on, even if you have to be dragged kicking & screaming along (that was me). I found this group, my family rallied around me, my church & some of my work friends continued to provide support, and I finally accepted my new reality. And you know what? It wasn't all bad! I've become closer to my kids & grandkids, I've learned to expand my view of the world & put my own struggles into perspective. Is it always okay? Nah, I still have times that I'm depressed & resentful, but I go with the flow & know that they will pass. I'm able to recognize that being a midwife, while a wonderful gift, wasn't all I was, and that I had other gifts to offer. You may be in that initial stage of shock, disbelief, some depression. Realize that most of us go through the stages of grief that are commonly associated with death--denial, anger, bargaining, depression & acceptance. There are other versions of this process, but the important thing to remember is that it is a process. There is no right or wrong way to navigate this experience, no timetable, and probably a need to do it more than once. Give yourself a little time to assimilate the changes in your life & the possible changes yet to come; be gentle with yourself. But get out in the world, stay in contact with good friends, look for new & positive influences and keep HOPE. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Mon, 11 Oct 2010 02:04:06 +0000 > Subject: A little bit lost...> > This may sound like a weird post but I'm really lost as to what to do now.> > My symptoms are kind of settled at the moment, and I'm stuck in this weird limbo. I feel like I could be working or doing more, but I'm not sure what, and I still have limitations, due to lost vision and strength. > > I feel really confused as to what I do with life now, it has to be more than just being sick. Spending too much time at hospitals has tricked me into thinking I want to be a nurse - but i don't think I do. > > I'm working volunteering one day a week at the moment and studying for an Arts degree, but I'm just really lost.> > What do others do?> > > > ------------------------------------ > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Marla said: I'm trying to keep up with Rambling Rose again, so that's all for now. Marla, sweetie, you should know by now that you can't keep up with me! , for me it was a combination of things that forced me to retire, on disability. The fatigue, muscle weakness & tremors first led me to give up catching babies, my favorite thing. My last birth was my great-nephew Trent. I continued to try working in the prenatal clinic, but I was having so many cognitive issues that I would see only 3 or 4 clients in an entire day, and still be there until 8 or 9 at night charting, because I couldn't remember the proper terms to describe something, or I had forgotten to order a test, etc. It became a real safety issue, with the other nurse-midwives & the nurses trying to watch my back, which wasn't fair to them. I considered trying to work in a non-clinical area, such as insurance reimbursements, but by then it was time for my CPR certification. Between the lung issues & weakness, I couldn't pass the test. A year or so before I retired, I had begun an accelerated program for a business degree, because I could see the handwriting on the wall. I was never able to finish it because I just couldn't maintain mental focus long enough. I had been on the Dean's List & also inducted into a national honor society for adult ed students, so it was very painful to have to drop out of the program, but a tremendous relief as well. The last class I took was an elective, jazz history. I managed to come out of it with a B, but it was horribly stressful. I kept thinking I would get better after treatment & be able to return & get that degree, but even after finally getting into remission I just don't have the mental stamina for the coursework. Doing these emails gets really hard after 30 min. or so; just have to keep stopping, rereading, rewriting stuff that doesn't make sense. I'm fizzling out now, but I really want to get through the last few messages while I have this laptop. When I finally gave up on any kind of nursing job or finishing my degree, I tried to think of something else I could do. By that time the knives were sticking me in the feet, so I tried to imagine someone paying me to sit at a desk with my feet up, working when I felt like it! I'm just OCD enough to go back over these messages 2 or 3 times, trying to catch typos (as you can imagine, I'm not very good at texting--I can't stand all the shortened, lower case words/letters!), so I would not be a very efficient employee. As it worked out, I've filled my time pretty well with ongoing family crises, including my mom's rapid decline & death due to Alzheimer's 2 years ago. If I had been working, I don't know how I would have managed. So, maybe it was for the best. I live in a smallish city & run into former clients & families all the time who remember me from providing prenatal care or attending births. It's gratifying, but I don't dwell on it much or I'll get in a pity party. Just TIODAAT--take it one day at a time, our Tracie's motto. Now you know why Marla can't hold a candle to my rambling! Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) To: Neurosarcoidosis From: mebramer@...Date: Thu, 14 Oct 2010 12:01:50 -0600Subject: Re: A little bit lost... , It's a hard call, as I am always thinking of what I could do, thought about home health nursing, but then I would have to be somewhere on there time, and I never know if I'm going to have a good day or a bad day, and what if it's a bad day, do I call in sick? I am lucky that I can keep my license active in that I do work for a home health agency that sends in home care helpers, not CNA's and I do all the testing and certifications they need done, it's a small operation, so I don't work very much, and it's on my time, and they come to my house, so even if I don't feel good, I would still do it. I wish it would get bigger and I could get more hours, but don't think that will happen. I also think I told you I do a business I am able to do out of my home too, but have to look good for that, but no big deal if I reschedule, and I love doing. I was hoping to really make this business work and move up in the "ranks" but it's just too much work, can't do it. My husband just opened a business and want to help him out, but right now he seems to be doing OK with it. I need to learn Quick books, but now he tells me he might just hire a CPA to do most the work on Quick books. My Mom is leaving with me, and I hate going into my office and leaving her alone, although she doesn't mind, and is doing really well, she's 89 and I would like to spend time with her too. I see the hands of God working here. I wish I had a good answer for you, but I also wonder (for me) if I would have trouble with an outside job with my memory which sucks. As far as the diabetes goes, I never had trouble with that, and I was on Pred for 3 years, I got the moon face and general puffiness, gained weight, but no trouble with my blood sugars, and I'm not sure if it goes away, someone else will have to chime in on that one. Well as you can see, I'm trying to keep up with Rambling Rose again, so that's all for now. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) I'm really worried about my capacity to keep working, which involves thinking and writing ... and SEEING. If the sarcoid gets into other areas of my brain, it could really screw things up. At least my work isn't physically demanding, that's something. I keep trying to think of different jobs I could do, but anything that isn't "mental" is physical, and that's probably not a good long term prospect either :/Re/ pred, I've been having trouble with high blood sugars, definitely over the normal range (my daughter has type 1 diabetes, so I've borrowed one of her backup blood sugar metres) ... guess I'll need to see the GP about some Metformin or something. Has anyone else had this side effect from high doses of pred? Does it go away when you're off the steroids?Cheers,------------------------------------------------------------Cracking Codes and Cryptograms for Dummieshttp://tinyurl.com/CodesandCryptogramsWord Searches for Dummieshttp://tinyurl.com/WordSearchesFollow me on Facebook!http://www.facebook.com/pages/-Sutherland/149144697766------------------------------------------------------ > I think many of us can relate to what you're feeling right now, we've been there. One thing> I will say is get your degree in something you can do sitting down, or not requiring you to be on your feet. There's a few of us nurses here, and I will let the others speak for themselves, but for me, I can no longer do nursing, I was a labor and delivery nurse and loved my work, but now can't walk well enough to do nursing anymore, I am limited to how long and how fast I can walk, so I can't do nursing. I've been running my own business ( Kay) out of my home, and that helps me feel useful, but if I could I would be back at the hospital working.> OK I guess that's me two cents. Some times I still feel lost and think the same thing, that I should be doing more, but I get tired easy, so have to pace myself. I don't know after time I think you become aware of what you can do and what you can't do.> hope that was helpful?>> Marla> Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too> is just today:)>>>>>> >> This may sound like a weird post but I'm really lost as to what to do now.>> My symptoms are kind of settled at the moment, and I'm stuck in this weird limbo. I feel like I could be working or doing more, but I'm not sure what, and I still have limitations, due to lost vision and strength.>> I feel really confused as to what I do with life now, it has to be more than just being sick. Spending too much time at hospitals has tricked me into thinking I want to be a nurse - but i don't think I do.>> I'm working volunteering one day a week at the moment and studying for an Arts degree, but I'm just really lost.>> What do others do?>>>>------------------------------------ ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Thank you for responding Rose, I'm taking on board what you said, because I think you are right about grieving. R > > > Rach, I apologize for the delay in answering your message. I know you have gotten some other responses. One of the difficult & frustrating factors in chronic illness is the losses we have to grieve & the adjustments we often have to make. I was forced to retire at age 55 after practicing 20 years as a certified nurse-midwife & 10 years as a labor & delivery nurse before that, along with some med-surg nursing. I had planned to work until about 70, perhaps just in the office if birthin' babies got too difficult. I then hoped to join the Peace Corps. When I had to quit working, I lost the career/vocation I loved, a big chunk of my identity, financial security, my house & most of my social life. The adjustments were difficult; I was often sad, resentful & downright furious! This wasn't how my life was supposed to go! But life goes on, even if you have to be dragged kicking & screaming along (that was me). I found this group, my family rallied around me, my church & some of my work friends continued to provide support, and I finally accepted my new reality. And you know what? It wasn't all bad! I've become closer to my kids & grandkids, I've learned to expand my view of the world & put my own struggles into perspective. Is it always okay? Nah, I still have times that I'm depressed & resentful, but I go with the flow & know that they will pass. I'm able to recognize that being a midwife, while a wonderful gift, wasn't all I was, and that I had other gifts to offer. > > You may be in that initial stage of shock, disbelief, some depression. Realize that most of us go through the stages of grief that are commonly associated with death--denial, anger, bargaining, depression & acceptance. There are other versions of this process, but the important thing to remember is that it is a process. There is no right or wrong way to navigate this experience, no timetable, and probably > a need to do it more than once. Give yourself a little time to assimilate the changes in your life & the possible changes yet to come; be gentle with yourself. But get out in the world, stay in contact with good friends, look for new & positive influences and keep HOPE. > > Ramblin' Rose > Moderator > > A merry heart is good medicine. Proverbs 17:22 > > > > > > > > > To: Neurosarcoidosis > > From: stiks11@... > > Date: Mon, 11 Oct 2010 02:04:06 +0000 > > Subject: A little bit lost... > > > > This may sound like a weird post but I'm really lost as to what to do now. > > > > My symptoms are kind of settled at the moment, and I'm stuck in this weird limbo. I feel like I could be working or doing more, but I'm not sure what, and I still have limitations, due to lost vision and strength. > > > > I feel really confused as to what I do with life now, it has to be more than just being sick. Spending too much time at hospitals has tricked me into thinking I want to be a nurse - but i don't think I do. > > > > I'm working volunteering one day a week at the moment and studying for an Arts degree, but I'm just really lost. > > > > What do others do? > > > > > > > > ------------------------------------ > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > > > > > Message Archives:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers. > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2010 Report Share Posted October 17, 2010 OK I give, you're right I can't keep up with you, I have the memory issues, and can't sit in one place very long, I spend my day sitting, then up and walk a little then sit, then up, just can't do one thing very long. Went out yesterday thinking I would do all theses errands, made it to target, and that was it, couldn't do anymore. I went through all those things too Rose, I tried teaching after leaving Labor and Delivery, I taught for almost 3 years at a community college, tried CNA classes, but I could not do the 4 days a week, for 6 weeks it took to teach those classes, and then clinical at 0630 that about killed me, so then I taught Medical Term. for about 3 semesters, then the teacher that taught the Medical Assistant class quit and they asked me to teach it, I was an MA before becoming an RN, so I loved teaching that class, and it didn't start until 0900, and Clinical I just had to check in on them at the clinic's they went to for (can't think of the word) training I guess, that was fun, that took about 2 semesters, then I taught a class for high school kids, intro to I guess the medical world, something like that. I actually ended up with a class of drop outs, that was there because the state paid, and really didn't want to be there, and by the end of class they loved it and wanted to go on in nursing, or something in the medical world, so that was rewarding. Then they decided to to put the MA and ENT classes together and asked me to over see the New program, M-F 8-5, well I wish I could of, but there was no way I could make that work. Since then I've kept myself busy with my Kay business, I can do it when I want and can, now I'm even scaling down with that, and trying to help my husband in his new business, I just hate it when my mind doesn't work, I think that is one of the most difficult part of this disease, even though I hate my wheel chair (long story), I hate the brain stuff more. but I can walk a little better, a little further, and the fatigue doesn't consume my life, (I can say that I just got up from a 3 hour nap:) I really can't complain, but I do keep thinking " maybe " when I get better I can go to Physician Assistant classes, it still OK to dream:) MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) Marla said: I'm trying to keep up with Rambling Rose again, so that's all for now. Marla, sweetie, you should know by now that you can't keep up with me! , for me it was a combination of things that forced me to retire, on disability. The fatigue, muscle weakness & tremors first led me to give up catching babies, my favorite thing. My last birth was my great-nephew Trent. I continued to try working in the prenatal clinic, but I was having so many cognitive issues that I would see only 3 or 4 clients in an entire day, and still be there until 8 or 9 at night charting, because I couldn't remember the proper terms to describe something, or I had forgotten to order a test, etc. It became a real safety issue, with the other nurse-midwives & the nurses trying to watch my back, which wasn't fair to them. I considered trying to work in a non-clinical area, such as insurance reimbursements, but by then it was time for my CPR certification. Between the lung issues & weakness, I couldn't pass the test. A year or so before I retired, I had begun an accelerated program for a business degree, because I could see the handwriting on the wall. I was never able to finish it because I just couldn't maintain mental focus long enough. I had been on the Dean's List & also inducted into a national honor society for adult ed students, so it was very painful to have to drop out of the program, but a tremendous relief as well. The last class I took was an elective, jazz history. I managed to come out of it with a B, but it was horribly stressful. I kept thinking I would get better after treatment & be able to return & get that degree, but even after finally getting into remission I just don't have the mental stamina for the coursework. Doing these emails gets really hard after 30 min. or so; just have to keep stopping, rereading, rewriting stuff that doesn't make sense. I'm fizzling out now, but I really want to get through the last few messages while I have this laptop. When I finally gave up on any kind of nursing job or finishing my degree, I tried to think of something else I could do. By that time the knives were sticking me in the feet, so I tried to imagine someone paying me to sit at a desk with my feet up, working when I felt like it! I'm just OCD enough to go back over these messages 2 or 3 times, trying to catch typos (as you can imagine, I'm not very good at texting--I can't stand all the shortened, lower case words/letters!), so I would not be a very efficient employee. As it worked out, I've filled my time pretty well with ongoing family crises, including my mom's rapid decline & death due to Alzheimer's 2 years ago. If I had been working, I don't know how I would have managed. So, maybe it was for the best. I live in a smallish city & run into former clients & families all the time who remember me from providing prenatal care or attending births. It's gratifying, but I don't dwell on it much or I'll get in a pity party. Just TIODAAT--take it one day at a time, our Tracie's motto. Now you know why Marla can't hold a candle to my rambling! Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) To: Neurosarcoidosis From: mebramer@...Date: Thu, 14 Oct 2010 12:01:50 -0600 Subject: Re: A little bit lost... , It's a hard call, as I am always thinking of what I could do, thought about home health nursing, but then I would have to be somewhere on there time, and I never know if I'm going to have a good day or a bad day, and what if it's a bad day, do I call in sick? I am lucky that I can keep my license active in that I do work for a home health agency that sends in home care helpers, not CNA's and I do all the testing and certifications they need done, it's a small operation, so I don't work very much, and it's on my time, and they come to my house, so even if I don't feel good, I would still do it. I wish it would get bigger and I could get more hours, but don't think that will happen. I also think I told you I do a business I am able to do out of my home too, but have to look good for that, but no big deal if I reschedule, and I love doing. I was hoping to really make this business work and move up in the " ranks " but it's just too much work, can't do it. My husband just opened a business and want to help him out, but right now he seems to be doing OK with it. I need to learn Quick books, but now he tells me he might just hire a CPA to do most the work on Quick books. My Mom is leaving with me, and I hate going into my office and leaving her alone, although she doesn't mind, and is doing really well, she's 89 and I would like to spend time with her too. I see the hands of God working here. I wish I had a good answer for you, but I also wonder (for me) if I would have trouble with an outside job with my memory which sucks. As far as the diabetes goes, I never had trouble with that, and I was on Pred for 3 years, I got the moon face and general puffiness, gained weight, but no trouble with my blood sugars, and I'm not sure if it goes away, someone else will have to chime in on that one. Well as you can see, I'm trying to keep up with Rambling Rose again, so that's all for now. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) I'm really worried about my capacity to keep working, which involves thinking and writing ... and SEEING. If the sarcoid gets into other areas of my brain, it could really screw things up. At least my work isn't physically demanding, that's something. I keep trying to think of different jobs I could do, but anything that isn't " mental " is physical, and that's probably not a good long term prospect either :/ Re/ pred, I've been having trouble with high blood sugars, definitely over the normal range (my daughter has type 1 diabetes, so I've borrowed one of her backup blood sugar metres) ... guess I'll need to see the GP about some Metformin or something. Has anyone else had this side effect from high doses of pred? Does it go away when you're off the steroids? Cheers,------------------------------------------------------------Cracking Codes and Cryptograms for Dummieshttp://tinyurl.com/CodesandCryptograms Word Searches for Dummieshttp://tinyurl.com/WordSearchesFollow me on Facebook!http://www.facebook.com/pages/-Sutherland/149144697766 ------------------------------------------------------ > I think many of us can relate to what you're feeling right now, we've been there. One thing> I will say is get your degree in something you can do sitting down, or not requiring you to be on your feet. There's a few of us nurses here, and I will let the others speak for themselves, but for me, I can no longer do nursing, I was a labor and delivery nurse and loved my work, but now can't walk well enough to do nursing anymore, I am limited to how long and how fast I can walk, so I can't do nursing. I've been running my own business ( Kay) out of my home, and that helps me feel useful, but if I could I would be back at the hospital working. > OK I guess that's me two cents. Some times I still feel lost and think the same thing, that I should be doing more, but I get tired easy, so have to pace myself. I don't know after time I think you become aware of what you can do and what you can't do. > hope that was helpful?>> Marla> Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too> is just today:)>> >>>> >> This may sound like a weird post but I'm really lost as to what to do now. >> My symptoms are kind of settled at the moment, and I'm stuck in this weird limbo. I feel like I could be working or doing more, but I'm not sure what, and I still have limitations, due to lost vision and strength. >> I feel really confused as to what I do with life now, it has to be more than just being sick. Spending too much time at hospitals has tricked me into thinking I want to be a nurse - but i don't think I do. >> I'm working volunteering one day a week at the moment and studying for an Arts degree, but I'm just really lost.>> What do others do?>>>> ------------------------------------ ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2010 Report Share Posted October 17, 2010 For memory loss you may want to try inositol and choline Re: A little bit lost... , It's a hard call, as I am always thinking of what I could do, thought about home health nursing, but then I would have to be somewhere on there time, and I never know if I'm going to have a good day or a bad day, and what if it's a bad day, do I call in sick? I am lucky that I can keep my license active in that I do work for a home health agency that sends in home care helpers, not CNA's and I do all the testing and certifications they need done, it's a small operation, so I don't work very much, and it's on my time, and they come to my house, so even if I don't feel good, I would still do it. I wish it would get bigger and I could get more hours, but don't think that will happen. I also think I told you I do a business I am able to do out of my home too, but have to look good for that, but no big deal if I reschedule, and I love doing. I was hoping to really make this business work and move up in the "ranks" but it's just too much work, can't do it. My husband just opened a business and want to help him out, but right now he seems to be doing OK with it. I need to learn Quick books, but now he tells me he might just hire a CPA to do most the work on Quick books. My Mom is leaving with me, and I hate going into my office and leaving her alone, although she doesn't mind, and is doing really well, she's 89 and I would like to spend time with her too. I see the hands of God working here. I wish I had a good answer for you, but I also wonder (for me) if I would have trouble with an outside job with my memory which sucks. As far as the diabetes goes, I never had trouble with that, and I was on Pred for 3 years, I got the moon face and general puffiness, gained weight, but no trouble with my blood sugars, and I'm not sure if it goes away, someone else will have to chime in on that one. Well as you can see, I'm trying to keep up with Rambling Rose again, so that's all for now. Marla Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) I'm really worried about my capacity to keep working, which involves thinking and writing ... and SEEING. If the sarcoid gets into other areas of my brain, it could really screw things up. At least my work isn't physically demanding, that's something. I keep trying to think of different jobs I could do, but anything that isn't "mental" is physical, and that's probably not a good long term prospect either :/ Re/ pred, I've been having trouble with high blood sugars, definitely over the normal range (my daughter has type 1 diabetes, so I've borrowed one of her backup blood sugar metres) ... guess I'll need to see the GP about some Metformin or something. Has anyone else had this side effect from high doses of pred? Does it go away when you're off the steroids? Cheers, ------------------------------------------------------------ Cracking Codes and Cryptograms for Dummies http://tinyurl.com/CodesandCryptograms Word Searches for Dummies http://tinyurl.com/WordSearches Follow me on Facebook! http://www.facebook.com/pages/-Sutherland/149144697766 ------------------------------------------------------ > I think many of us can relate to what you're feeling right now, we've been there. One thing > I will say is get your degree in something you can do sitting down, or not requiring you to be on your feet. There's a few of us nurses here, and I will let the others speak for themselves, but for me, I can no longer do nursing, I was a labor and delivery nurse and loved my work, but now can't walk well enough to do nursing anymore, I am limited to how long and how fast I can walk, so I can't do nursing. I've been running my own business ( Kay) out of my home, and that helps me feel useful, but if I could I would be back at the hospital working. > OK I guess that's me two cents. Some times I still feel lost and think the same thing, that I should be doing more, but I get tired easy, so have to pace myself. I don't know after time I think you become aware of what you can do and what you can't do. > hope that was helpful? > > Marla > Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too > is just today:) > > > > > > > > This may sound like a weird post but I'm really lost as to what to do now. > > My symptoms are kind of settled at the moment, and I'm stuck in this weird limbo. I feel like I could be working or doing more, but I'm not sure what, and I still have limitations, due to lost vision and strength. > > I feel really confused as to what I do with life now, it has to be more than just being sick. Spending too much time at hospitals has tricked me into thinking I want to be a nurse - but i don't think I do. > > I'm working volunteering one day a week at the moment and studying for an Arts degree, but I'm just really lost. > > What do others do? > > > > ------------------------------------ ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
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