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Discussion Starter · #1 ·
Hello everyone. I just needed to come and whine for a bit today. I swear this disease is the worst thing that I have ever been through and I just don't see the light at the end of the tunnel. I so want to go home and crawl in the bed and stay forever.

I have only been diagnosed for about a year with lupus. Every since then I have been on steriods. Everytime I try to come off of them, I get worse. I went to see my rheumy a few weeks ago and I had protein in my urine so he is running some more tests. He increased my steriods to 40mgs and I am still struggling. I'm so tired I can't see straight and my joints are killing me. He is on vacation this week so I won't be able to talk to him again until Monday morning. He put me first on his schedule when he came back though because he knows that I have been having such a hard time and my 24 hour urine test results will be back so he can look over those. He was really worried that my kidneys are being affected.

I'm having such a hard time maintaining my full-time job. Every morning is harder and harder instead of easier. I'm mad because I can't get better. I love my job and what I do but I have to drag myself out of the bed everyday and it takes all I have to get through the workday. I can't afford to go part-time because my work provides my insurance and financially I need to work. I just keep praying that I will get some relief and get better but after a year I only seem to be getting worse.

I have struggled so hard my entire life to get where I am today and I just feel like it will never end. Can't I just crawl up in bed and stay there??? I know I can't but I just needed to let some of this go today. Thanks to everyone who reads this and I'm sorry for being so gloomy.
 

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Tracy, sounds as though you are having a really hard time at the moment. Could you not take a few days off work to give yourself time to recover? I know its difficult, but it is sometimes what we need.

What meds are you on apart from steroids? I am glad your rheumy is treating you well and keeping on top of your tests, that is important.

Life with lupus isn't always easy and we can all identify with how you feel. When we are flaring it can feel as thoughit is going on forever especially when the disease is not adequately controlled. I hope that when you see your rheumy on Monday he will be able to sort your meds to give you some relief.

Take it easy in the meantime.

Deb
 

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Discussion Starter · #3 ·
Hey Deb,
I have been taking a lot of days off lately because of not feeling well so I'm trying to hang in there. Plus my boss is on vacation this week so that leaves me in charge...

I'm taking 15 mgs of methotrexate, folic acid, and 400 mgs plaquenil for the lupus. I take some other meds but mostly for high blood pressure and acid reflux. I have some pain meds too but I don't like to take those unless absolutely necessary.

I am very lucky that I have a doc that is listening. I guess he can tell though that I have been very sick because my blood work has been off every time. I just don't understand why I didn't respond to the increase in steriods. I went from 8mgs to 40 mgs in a matter of days. I mean I'm a little better but not good. I'm just so frustrated and want to feel better.
 

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(((((((((((((Tracy)))))))))))))

sorry to hear that things are so tough :(

There's no need to apologise, I just wish we could do more to help. It sounds like your rheumy is concerned and keeping an eye on you which is good but that the job is pretty tough going. I can't give any advice there as I didn't manage to get back to work but I really hope the rheumy comes up with some answers and possibly a med change to try and control things better.

:grouphug2:
Katharine
 

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Tracy, i know just where your comming from, i just don't know what to say, as you say you got to keep working, i managed to work from being dx in 2000, till 08,when they fnished me on ill health, i loved my job to, and needed the pennys, but i just couldnt drag my self any longer, and it was really effecting my head, making it harder to work with ppl.

I do really understand where your comming from though, as lots of us are where you are now and have been there hun,but at the end of the day, when you have worked all day whats left for you? i know nothing olny bed,

life doesnt seem fair at times, i really hope that you do turn a corner
and life gets better .Lin xxxx
 

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Howdy Tracy,
Yet again let me say how I admire those lupies who hold down fulltime jobs. I do not know how you do it. I also don't know how I did it for 35+ years. Today I couldn't hold down a one hour a week job since
I never know how I will be until I am.
All the best to you, and may you feel better soon.
Douglas+​
 

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Hi Tracey,

Don't worry about being gloomy. We have all been gloomy, from time to time.

I am so sorry your having such a terrible time of it Tracey. I wish words could make it all better for you.

I can only offer my sympathy, and support to you. I do hope that the pred will help you feel better soon.
:getwell:

Sandy
 

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Discussion Starter · #8 ·
Thanks to everyone for your replies. I feel so awful whining but I'm at the point that I need to I guess. It's so hard talking to others that don't have a clue what you are going through. I have a great support system but you can't truly understand unless you have been there. My husband does his best but he doesn't understand why I let it get me so down. It is so frustrating to not be able to feel better. My rheumy is on vacation this week and I am just praying to make it until Monday morning. :unsure:

Again, thanks to everyone!!!
 

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Hi Tracey, feel free to winge and moan anytime. Goodness knows i've done plenty of it round here and everyone is so supportive. I hope you make it ok to monday to speak to your rheummy. Take care x
 

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I too am in awe of all you lupies who work full time... I wish you well and hope you find some relief very soon.. until then be kind to yourself.
XX Claire
 

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((((HUGSSSS to TRACY)))))

I feel your pain,,, I have been in a pretty gloomy mood myself... my boyfriend teases because he can tell I am tired, I turn into such a crab. No matter how much sleep/rest I get its never enough. I hope we all get some relief soon because it does such. I am currently on 4 mgs of prednisone. I am really hoping I will be totally off of it soon too.
 

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Discussion Starter · #12 ·
Well I went back to see my rheumy and he thinks that Fibromalygia may be the culprit of why I am not feeling much better. My lab work came back okay but I told him I was still in a lot of pain and extremely tired so I guess I am adding that to my list of problems. He started me on Cymbalta and now I'm not sure whether I am more tired or not. I actually feel a little better at some points in the day but others I yawn so much and so loud. I didn't sleep very well last night which I am blaming on the Cymbalta. I have been doing some research on it and fibro now but any advice and experiences are greatly welcomed.
Thanks!
Tracy
 

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Hi Tracy-
I want to say how sorry I am to hear that you are having so much joint pain and exhaustion, on top of having to work full time. The good news is that you will be talking to the doctor on Monday. I am taking the same meds as you are except I am on 7.5mg of methotrexate. I am still having alot of joint pain and was going to ask my doc if I can increase the MTX. I remember reading a post on this site that said it is difficult finding the right combination of meds that works for each of us. I hope you and your rheumatologist find that right combination soon so you can get some relief. I have to run and fix my grandson some lunch. Take care and please let us know how you are doing. Oh, and no need to ever apologize, you should hear me whine!
Rose
 
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