I am newly dx'd and in search of advice on handling a full-time job (secretary) and the pain/fatigue/headaches of lupus. I've already missed 2 days this week due to fatique and headaches. I've only been working where I do now for 11 months, and used most of my "sick time" in Oct when my husband had DBS surgery for his Parkinson's. Yes, aren't we a pair-in our early 50s and dx'd with Parkinsons and Lupus!
I wish I could help you more on this kind of advice. I work full time in customer service and have had many hard times. I used to call out when I was really bad, but then got warned about it. I could not lose my job & income so I end up dragging myself to work no matter what. I went to work every time I got sick. I also struggle with the brain fog and it gets brought to my attention alot of things i forget to do, etc....Somehow I just try to block it out so i dont have a breakdown or something, but I really don't know how I do it. I also had a severe spine problem which prevented me from walking more than 40-50 feet or so at a time and I dragged myself in, holding on the walls like an idiot. I think i'm lucky they havent gotten rid of me yet. At least I had my spine problem fixed by surgery and would have a better chance of going to inverviews in case I do lose job one of these days. I wish I could tell you how I get through it, but I don't really know myself. I can sympathize with you, though as I know exactly where you're coming from.
I can sympothize. I am very lucky that I still have a job. I have now been on my job for 5 years but luckily I had been there for 3 years prior to getting sick and had a great attendance record. They also knew that I was coming it to work when I could. When I miss work they know it is because I have no choice. I missed 23 days last year, but in that time had 2 bouts of pneumonia broke 3 ribs and several bad days from flares. They set it up where in a pinch I can work from home. I am extremely lucky. I am open and honest with them. I also have my doctor only 2 blocks from my work so I use my lunch hour to go to my doctor visits to minimize my missed time. I have a problem with brain fog and fatigue. My doctor has prescribed provigil. I take 100 mg on mild days and 200 on the worse days. Then there are the days that nothing would help. It is a stimulant but does not make you jittery. Just more alert. I also take ambien to help me get a good night's sleep. For pain I take ultram. This is non narcotic and is helpful on most days. I reserve vicodin for the really bad days. I am a single mom with 4 kids. I still struggle. You find your way through it. Just rest when you can. I am also taking methotrexate. I have had to come off of it and have only been back on a month now. Hopefully I will stay infection free long enough for it to get to work this time. Still taking 20mg a day of prednisone. I am going back to the dr tomorrow. I am in a pretty bad flare right now with major joint swelling and rashes, pleurisy...so I am not sure what he will do. My main concern is the lymphnodes. I have several that are huge and just keep getting bigger. He hasn't seen them yet. I mentioned it when I saw the nurse for my blood work 3 months ago. Hopefully they will get smaller. They dont hurt, just bothersome. The one behind my knee and under my arm get in the way.
Hang in there. I think the beginning is the hardest because you never know what is normal, what to expect and how to deal with it. As time goes on, normal changes and you find ways to help you through.
Thanks for sympathizing and letting me know that I am not in this alone. Your story sounds so much like mine, as I also have back problems---a herniated lumbar disc (L5)-the second time for this. So walking up a hill to the office (the parking lot is down the hill) is a major accomplishment for me. I'm worn out by the time I even get in the office.
Hi....I just wanted to say once again, I can't believe I am finding people who are dealing with so much of the same things I am...I am in bed today with another URI or possibly Flu "B" and I am too embarassed to tell my territory lead (I am card merchandiser, so there is some flexibilty in my schedule) I have had so many this fall that my doctor asked me if I was trying to set the world record in URIs? But as far as work goes, my accounts need to be serviced each week.....and I missed a whole week the week before last, and here I am again. I am afraid of what she will say even though she knows what is going on...I just hope after seeing the rheumatologist, that somehow I will have a better immune system...
I think being honest is the hardest for all of is, but is it the best? Probably...I doubt they can fire you for having a disorder?
Since the previous poster mentioned his pain med, I will go ahead and mention what I have been prescribed for headaches...its called Fioricet and has butabital as its active ingredient which is not in the Lortab family. Those have never really helped by Fioricet will. It is not as strong as those in the Lortab family. I did try Ultram as well but got terrible rebound headaches and fluid retention. Anyway, it so so hard being newly dx'd and I still am dealing with it and have to have the more in-depth testing done. I am so frustated that I just cannot stay well....good luck with your boss!
Hi there! There are just too many people out there that don't believe that a person can feel the way we do...lack of expericence and compassion. I'm lucky to still have my job as well. Two weeks after I started working there I missed about four days straight because of my rash. I can't be out in public with it...everyone thinks I've got some contagous disease and i work in customer service with kids. Plus when I get a rash it completely drains me of every ounce of energy I could possibly have. But luckily I have 2 members of management on my side, one of them as a friend and one of them is sick often as well. So she sympathizes with me.
All you can do is try your best, and if that's not enough for someone...then they don't deserve to have you around!
Good luck. Bless you and your hubby.
PS...how did DBS do for him? I've seen a lot about it and would be interested in hearing about it from a patients level.
The DBS has worked wonders for my husband! He is 54 yrs old and was dx with Parkinson's at age 46. He has never had a tremor--his symptoms are general over-all weakness and muscle pain, low blood pressure, extreme sweating (autonomic system is affected), soft voice and small handwriting. He had the DBS surgery in October and was "turned on" the week of Thanksgiving. We live near Nashville so the surgery was done at Vanderbilt. He's still taking his medicines, hoping to be able to reduce them in the future.