PDA

View Full Version : Glad to find this website!



zrd
08-13-2011, 12:41 PM
Hi! Just saw this website and am excited to have a forum to bounce questions re: Lupus.
I was diagnosed over a year ago despite being on Plaquenil and staying out of the sun and watching what I eat (I'm now on a strict Gluten-free diet for over a year), I still am always tired and never feel like doing too much. And, my muscles hurt... Now, since raising a few kids, I'm looking for a job again and wonder if I can handle a full day of work in an office. I haven't crossed that bridge yet (since it's really tough finding a job after spending 10 years out of the workforce), but I'm already wondering it since most days I cannot make it without a nap or laying down for a while. Any thoughts?

tgal
08-13-2011, 01:29 PM
Hi! Just saw this website and am excited to have a forum to bounce questions re: Lupus.
I was diagnosed over a year ago despite being on Plaquenil and staying out of the sun and watching what I eat (I'm now on a strict Gluten-free diet for over a year), I still am always tired and never feel like doing too much. And, my muscles hurt... Now, since raising a few kids, I'm looking for a job again and wonder if I can handle a full day of work in an office. I haven't crossed that bridge yet (since it's really tough finding a job after spending 10 years out of the workforce), but I'm already wondering it since most days I cannot make it without a nap or laying down for a while. Any thoughts?

Hi and welcome to WHL! I am so glad that you found us. Has your doctor discussed putting you on a low dose of steroid? Plaquenil and steroids are usually the first line defense for people with Lupus and it often helps quite a bit. As for the diet there really is no Lupus diet so whatever you find that helps you is the way to go!

Now, about the job... You are in a very difficult place. I would say that only you can decide if you are up to it. Maybe find a part time job and see how that goes. The decision to work or not work is a really hard one. I hope you figure out what to do soon.

One again, welcome to our WHL family. We really are glad to have you!

abbasgirl
08-13-2011, 03:48 PM
Hi zrd! And welcome to WHL.

I agree about finding a part time job and go from there. You need to go easy on yourself.

I'm still going through the fatigue too but mine is mostly related to Vitamin d deficiency...we think. Lupus is so much fun...not... there's so many things that could be wrong and it's quite a process figuring out what is causing what and which thing will help with it the best.

Some of the first advice I got when I first joined here was how important it is to make sure you're getting enough rest. We need plenty of rest and when we're in a flare, even more rest. I've found that out of all the vitamins, meds, and other things we can put in our bodies, the most important thing I can do for my body is rest. It's a big adjustment but learning to pace yourself and give your body the opportunity to deal with the flares really can make a difference.

Elo
08-13-2011, 04:17 PM
Hey zrd!
welcome to the forum and the family (: Unfortunately, even with medication and changes in diet and habits, Lupus still effects us in our everyday lives, especially with fatigue, joint and muscle pain, and brainfog - to name a few. What tgal mentioned was right though - steroids might help. Not sure if you're familiar with them..but these steroids (most lupies are on prednisone/prednisolone), suppresses the immune system so that the attacks on our body aren't as bad. As a result, when you first get on steroids, you feel AWESOME!!! Eventually the side effects start kicking in though, and after a while you have to battle with the side effects and the positive effects, and you basically try to hope the goodness wins.
Many people on this site do manage to work full time, despite their illness. I, however, have my sickness nowhere near under control and don't even consider working to be an option.
It's really up to you and your body. As tgal suggested, I would possibly start out on a part time job and perhaps work your way up from there. If you can't find one right away, especially since you haven't had a job in so long, then maybe try out volunteering, so you can work when you feel well enough to, and slowly build your way up. Know what your limits are. Make sure you get plenty of rest, as abbasgirl said - it's extremely important not to push yourself too hard, because you'll end up paying for it in spoons later (:
Anyways, i'm so glad that you've joined, and i hope you'll like it here! There's plenty of people you can talk to who are in the workforce, who live, well, relatively, normal lives, that you can talk to and hear stories from.
best of luck!

zrd
08-13-2011, 05:15 PM
Great advice from all. I currently do volunteer a little and ideally AM looking for Part time work, but I see more Full time opportunities than Part time. We'll see.

And, thanks for the kind welcome!

Gizmo
08-13-2011, 05:15 PM
Hi zrd! I have also raised my family and NEED to go back to work because of my daughter's medical expenses. I haven't worked for 5 years, but it's been 20 years since I worked as a nurse. The same questions go through my mind about whether I can handle it. I hope you keep us posted on how things go for you!

lovedbyHim
08-13-2011, 06:08 PM
Hi zrd! So good to have you join us. Gosh, there are so many reasons one can still be so tired. The lupus trashed my thyroid and continues to. Each time it does my hormones change and I get exhausted. Fibromyalgia can also be part of lupus and by does it make me tired. Anemia from the lupus can cause fatigue. Lupus can cause fatigue. I take prednisone 5 mg daily. My rheumy believes that it is almost always best to be on a low dose daily along with the Plaquinil, to have control of the symptoms. I hope this helps some. As far as working, I would give anything to just work part-time because it is nearly impossible to keep this full-time job of mine. Good luck in your decision.

steve.b
08-15-2011, 12:50 AM
hi,
i cannot offer advice on work, as i have had to stop.
but i still wanted to welcome you.

bunny28
08-15-2011, 06:07 AM
Welcome zrd!

I don't know how you will handle work obviously as we are all so differently affected by this disease. I was diagnosed about 8 months ago. I am currently on plaquinil "only"(other drugs to treat specific symptoms like headaches, acid reflux) but no steroids (yet?). Anyway, I do work full-time though am currently on holiday. I will tell you that I feel better when not working...and have more left for my husband and son when I don't have to leave it all at the office. I am aware that someday I may not be able to work full days but I am holding on for now. I think it will also depend on what kind of job you get. I have an active job where I am moving and crouching and getting back up a lot...I often wonder what I would feel like if I had a more sedentary job where I could schedule my own "body breaks" and stretch., etc as needed. Also keep in mind lighting as fluorecent lights may affect you if you are sun-sensitive.

Best of luck!