I am of work and have been since the 20th of July I have had 3 rounds of antibotics over the last couple of months will take the last one in a couple of hours finished my prednisone and have been resting eating right and am doing great with the stopping smoking usually after being off I feel much better so I have no ideal why this time I am up at 2 am my head hurts my fingers are swollen I feel a major flare coming on which means I probably will not be off the couch tomorrow and I have a butterfly rash on my face. I could scream. When my doctor told me this is it you will not be going back to work I thought yea right we have had this discussion before 6 weeks of and back to work I go I should have listened 2 years ago and went off then instead of pushing myself so much, but I loved nursing and since we make the worst patients I didn't and now I am going to pay for it. I have so much to be grateful for my kids and grandkids live on the property my mom lives with me my house is not much but its mine and I love the new friends I have made here and on the fibro site so I should not be whining and feeling sorry for myself. guess I will take a pain pill and try to get comfortable at least being up will give me time to read other post and catch up.
Hi purplebutterfly,
I'm sorry you're going through this. Its not easy being told you have to stop working, when you enjoy it and really want to continue. Take care of yourself and get some rest. We are here for you.
Purplebutterfly
I fought the doctor too! I too loved my job as a crime scene investigator. I was told in February of last year i needed to stop working and I didn’t listen. In the beginning of June I developed vasculitis and that was it. The first four months was very difficult for me to just sit around and rest, eat right and take care of myself. But now a year later I am thankful! I have a lot of nights where I am up at 2 am. But the good thing is I don’t have to get up at 6 am to go to work anymore! The one thing that I have noticed is it is much easier to handle the flares and actually every one in a while going to rim sleep! Hang in there my friend it does get better.
Wishing you all the best…
Deenie
Hi purplebutterfly,
I know it's hardstopping work but it's come to alot of us, i stopped at 18 through seizures and i'm now 45 but for years i could'nt get used to it, then i find out the seizures was caused by the Lupus in 2008.
Please try not to have anymore antibiotic's although your not well because our immune system is low already and they lower it even more....anyone who does'nt suffer illness should only have two lots in a year....Sorry you have the butterfly rash, mines just gone again and left pigmentation marks on my face.
I am pleased to hear though you have your family around you when times get tough and venting does we all good at times, so dow worry where that's concerned.
Get well soon mate and all my love Terri xxx
Thank You all Love the pic Tez I feel horrible my daughter is going to cook our evening meal and my son is taking mom with him for the night. After we eat I am going to take a warm bath my meds and try and lay down and get comfortable.
I completely understand where you are coming from! I have only been diagnosed for 3 months but haven't been able to work in 4 months. It has been really hard just sitting around doing nothing and seeing my mom work so hard. I am only 20 and having to go tell my boss I couldn't work was the hardest part of this whole ordeal. My boss was so wonderful about the whole thing and told me if I can ever go back to work she would hire me back in no time. Hope you have a good night! :)
Hello purplebutterfly,
How you feeling now in yourself....please update we when you can mate :)
Hi Louters,
I am sorry you've had to leave your job also...Lupus is one cruel disease the way it treats our bodies and when other immunes get involved besides then it really tells more on we.
Louters look at it this way concerning your mom, if she did'nt want to do it then she would'nt, she sounds like she loves you dearly and wants to keep ontop of things and i admire her for standing by you.
Hugs Terri :)
Louters said:
I completely understand where you are coming from! I have only been diagnosed for 3 months but haven't been able to work in 4 months. It has been really hard just sitting around doing nothing and seeing my mom work so hard. I am only 20 and having to go tell my boss I couldn't work was the hardest part of this whole ordeal. My boss was so wonderful about the whole thing and told me if I can ever go back to work she would hire me back in no time. Hope you have a good night! :)
Deciding to quit my job was one of the hardest things I've ever had to do. It was the right thing to do but I still feel like I failed. It was especially hard because my family did not support it. Now after more than 10 years I want to feel like to feel like I have a life outside of being sick. But when I am not well, which is often, I am glad I do not have to call in sick, again, and take care of myself. Hang in there, it's difficult but you can do it.
tacteach it's hard when jobs have to be given up because you have lost your independance for getting out besides mixing with others and when it happened to me i felt like my life had come to an end and i just did'nt want to live as the years was going past.
Like you say though you don't have to call in sick and you have the time to feel better on your own.
Hugs Terri :)
tacteach said:
Deciding to quit my job was one of the hardest things I've ever had to do. It was the right thing to do but I still feel like I failed. It was especially hard because my family did not support it. Now after more than 10 years I want to feel like to feel like I have a life outside of being sick. But when I am not well, which is often, I am glad I do not have to call in sick, again, and take care of myself. Hang in there, it's difficult but you can do it.
Thanks tez you are very sweet and spot on. :)
Tez_20 said:
tacteach it's hard when jobs have to be given up because you have lost your independance for getting out besides mixing with others and when it happened to me i felt like my life had come to an end and i just did'nt want to live as the years was going past.
Like you say though you don't have to call in sick and you have the time to feel better on your own.
Hugs Terri :)
tacteach said:Deciding to quit my job was one of the hardest things I've ever had to do. It was the right thing to do but I still feel like I failed. It was especially hard because my family did not support it. Now after more than 10 years I want to feel like to feel like I have a life outside of being sick. But when I am not well, which is often, I am glad I do not have to call in sick, again, and take care of myself. Hang in there, it's difficult but you can do it.
I'll answer your discussion on tremors now mate :)
tacteach said:
Thanks tez you are very sweet and spot on. :)
Tez_20 said:tacteach it's hard when jobs have to be given up because you have lost your independance for getting out besides mixing with others and when it happened to me i felt like my life had come to an end and i just did'nt want to live as the years was going past.
Like you say though you don't have to call in sick and you have the time to feel better on your own.
Hugs Terri :)
tacteach said:Deciding to quit my job was one of the hardest things I've ever had to do. It was the right thing to do but I still feel like I failed. It was especially hard because my family did not support it. Now after more than 10 years I want to feel like to feel like I have a life outside of being sick. But when I am not well, which is often, I am glad I do not have to call in sick, again, and take care of myself. Hang in there, it's difficult but you can do it.
Well the pain and fatigue are horrible. I see my primary care tomorrow it hurts to take a deep breath my ears and throat hurt my lympnodes are swollen. I do not think the infection is ever going to go away. my mouth is terrible dry even with the biotene moth rinse. and apparently I can not spell tonight. I am going to try and catch up on every ones post tonight.
purplebutterfly said:
Well the pain and fatigue are horrible. I see my primary care tomorrow it hurts to take a deep breath my ears and throat hurt my lympnodes are swollen. I do not think the infection is ever going to go away. my mouth is terrible dry even with the biotene moth rinse. and apparently I can not spell tonight. I am going to try and catch up on every ones post tonight.
Tacteach ... are you sorry you stopped working? Did you have better days, less stress? Please say "yes" Tootles, :) Hugs ...
tacteach said:
Thanks tez you are very sweet and spot on. :)
Tez_20 said:tacteach it's hard when jobs have to be given up because you have lost your independance for getting out besides mixing with others and when it happened to me i felt like my life had come to an end and i just did'nt want to live as the years was going past.
Like you say though you don't have to call in sick and you have the time to feel better on your own.
Hugs Terri :)
tacteach said:Deciding to quit my job was one of the hardest things I've ever had to do. It was the right thing to do but I still feel like I failed. It was especially hard because my family did not support it. Now after more than 10 years I want to feel like to feel like I have a life outside of being sick. But when I am not well, which is often, I am glad I do not have to call in sick, again, and take care of myself. Hang in there, it's difficult but you can do it.
Tootles, yes I am glad. I couldn't have continued teaching or anything else. I remember telling the principal that I wasn't renewing my contract and once that was done I knew it was right. I had missed over 3weeks of work over 9months in my last year of teaching. I couldn't give quality to my students or myself. Tootles it really will be alright.
Thank you tacteach. I am preparing to take the plunge. There are some days I get so confused trying to respond in an email and have deleted more than I can count just to retype something that doesn't sound as much like someone in first grade. Thought process is slowing going .... Thank you for your support!
Get right on getting a lawyer and applying for disability. Very important to get that paper work filled out. They want your life story,but don't let it get you down. We will be here for you.:)
Thank you so much! I have begun the process ... my son and I own an insurance agency. He tells me "how much energy does it take to sit at a computer all day" lol .. I gave up going to meetings last year. He has no idea how much energy it takes just to spell correctly anymore ... Have started transferring everything to him; once complete I will fill out the paperwork and hit the submit button (all the while praying, of course). I really appreciate your support!
Purplebutterfly ... Hope you are feeling better. I have ranted twice so far and just writing how I really feel felt so good to get it all out. I am new to the site but I think you are supposed to release here so we can let you know that you are not alone; we are here with you always. You and others have supported me. Let us catch you, too.