View Full Version : how to handle work without a diagnosis
01-20-2011, 04:44 AM
Good morning all!
Just looking for a bit of advice as I wait (impatiently) for my March 4 appt. with the rheumy. Obviously my boss knows I've got something going on, as I have felt sick for a couple of months. She was pretty understanding in the past when my knee problems were just knee problems, before they evolved into all of this. (I did have surgery on my left knee last June, missed a lot of work before surgery and had worked at home quite a bit due to pain issues.) I have worked from home for a few days over the past 2-3 months because of whatever "this" is, too.
I hate to feel like I am being a wimp, taking advantage, etc. but as you guys know sometimes it's so hard to drag myself into the office. Is there some kind of rule about how to handle the ups and downs of your health before you have a diagnosis? I have been feeling worse and worse for the past couple of weeks as I have ignored my increased pain and obvious need for extra rest. I hate to turn into the "I don't feel good" girl til I know what's wrong with me, but... just because I don't have a diagnosis, that doesn't mean I don't feel awful!
How to approach my boss to talk about my problems? How to get my work done? So many questions, haha. This is all so frustrating and new to me still.
01-20-2011, 05:06 AM
This is a good question, but hard to answer.
Even after you have a diagnosis, no matter if it is lupus, RA or any other AI disease, most people have no idea what they are. Therefore they still don't understand, mainly because we don't look sick.
You can just hope for an understanding boss.
Good luck to you on your rheumy visit.
01-20-2011, 06:09 AM
I so understand this one.
I took ill in 2004,summer.I was working full time,then had to stop for 6 weeks or more as i just lay there unable to do anything even talk much or eat.Didnt know what was happening.To cut a long story short,after lots of fighting with doctors i was dx with lupus,fibromyalgia,raynards,srogrens and many other things,to then be told my bloods were fine which made me feel like a fake!
I went back part time,then 4 days,to the point at work they were giving me far too much for me to do on top of my own job.One day i woke up n just couldnt do it anymore.Its very hard i know,but i was given the label of an illness called M.E,in my eyes the get out label.So each day is an effort.Its hard to go from healthy to toally unable to do much.But you get through it.Its scarey,not allot of money,but you get through it some how.
I dont look sick either.Some people at work took advantage and were plain right horrid.But i still tried my best but some will never understand i am actually sick.So hag in there n take it 1 day at a time.
We will all support you.Its frustrating i know,but we are here for you.Sorry you too are going through all this.
YOU ARE NOT A WIMP!!!!!!
Lots f love
01-20-2011, 06:45 AM
thank you so much, just getting an "amen sista" is encouraging. I am currently insured by my employer rather than my husband's because there is no deductible. Makes sense for the time being since I am always at the doctor, but means I have to come to work! I wasn't planning on working forever because I want to have kids, of course with AI things that is another different can of worms and discussion, isn't it?
Also I have a mom going through cancer treatment out of state, so I am really the "working remotely" champ of the office anyway. When it rains...
amanda how are you doing now?
This is such a great topic. When I was working it was so difficult but there are some things you can do to make going to the office easier. Although they (your employer) don't have to allow you to work if you can't do the job (ie come in as is what happened with me) they are required to make reasonable accommodations for you. The majority of us have issues with the sun and UV rays which also means florescent lighting. I would go to work and in my office alone there were two giant florescent lights above my desk. Before I knew this I found that I would leave work exhausted and hurting. I would spend the evenings and weekends in bed trying to recuperate.
When the rheumy said "classic lupus" to me and I began to look everything up I found out about the lighting. I went to work and turned one of the 2 over head lights off in my office. Asked for a UV blocking cover for my computer screen. Wore a hat, long sleeves and covered up in sunscreen every day. I would also shut my office door and take about a 30 min rest during my lunch with the lights completely out. It didn't fix everything but it was better for a little while.
I think the most important thing that has to happen is that you have to get to a place where you don't doubt yourself either. I know it is hard to do. So many doctors and family members want to make us doubt that we are ill. They make us think we are lazy or crazy when we are not but when dealing with an employer you have to get over that. Being the boss doesn't mean they are perfect but they do look for cues from you. When you go talk to them you can be apologetic but stand your ground. You are ill. You may not have a name for it yet. You be having to try different things to find out what works and doesn't work for you but do not show any doubt that you are ill. Come here to vent. We understand the fear, the doubt, the confusion and we will support you every step of the way.
As for your mother, I am so terribly sorry. I went through that with my mom many years ago. I know how tough that is but please make sure you take care of yourself as well. You must be rested or you won't be any goo to anyone.
A special hug to you. I hope this made sense. Brain fog is not going away this week
01-20-2011, 08:19 AM
Thank you SO much, Mari. You're right, the self-doubt is awful! I will say "I hurt all over," or "I'm sore today," and my husband will ask why. I don't know why, and he knows that, but I feel like a broken record. I have a hard time remembering words, and I have always been the "grammar police." That's embarrassing. Also to have my mom worrying about me makes me feel so bad.
I have noticed that fluorescent light bothers me, big time. My face feels itchy and hot when I get to work, and it stays that way all day. I feel so much better when I get out of here, but I do need a nap pretty much every afternoon just to function- then go to bed extremely early (8:30 or 9.) My husband blames my odd work schedule (5 am - 1 pm) and tells me to change it, but I did it with no problems for a year before this. I used to be able to feel rested, no more! I feel like all I do is sleep, but am still always exhausted.
It's hard to trust myself I guess because I have never been sick. Also because I have been an orthopedic patient for so long before this, I get the feeling everyone is tired of hearing about my joint pain. No one is more tired of it than me! There is a cold front coming in, below-zero wind chills, and the last time this happened (right before Christmas) I couldn't get off the couch for 4 days. Hoping I can hang in at work til the weekend
all of you are so wonderful, I sort of can't believe it. So glad I found this place.
01-20-2011, 12:52 PM
Hi, I still work. It's very hard to push yourself. You have to pick and choose your battles. I'm lucky in that my boss also has AI diseases. However, my problem is pain and fatigue at the moment. I have to push myself every afternoon to finish the day. I also go to bed around nine; sometimes I just go straight home to bed. I need my insurance as I was a single mom after my divorce. I need to work another 3 years and I don't know how I'm going to make it. But I am 62 years old. I've worked with these symptoms for over 20years.
That cold front that's coming. Take as many hot baths as you can. It helps keep the body temp up and muscles relaxed. Then wrap up or dress warmly, too hell with fashion. I look very funny with my knit hats. I used to put my feet in a box to keep them from getting cold. Now I have a space heater with thermostat under my desk. Keeping warm also helps with the joint pain. If you can turn off the fl... lights like Mari said is good. I'm having to let mine burn out and not replace.
Chin up you can do anything you have to do. Even if you find yourself taking 2 steps backward for every step forward. My favorite saying (besides scripture) is "It always works out in the end.
Hugs and prayers,
01-20-2011, 08:06 PM
Hi, and welcome to WHL.
I'd like to say listen to your body and don't push yourself beyond your limits, as I did.
I was a teacher in Texas, and LOVED my job. I had gradually worsening symptoms and started using a cane to get around the school.
I fell in front of my classroom often, but the kids would help me up, I'd shrug it off and go back to the lesson.
The last year that I taught, I had knee surgery, so I got around with a rollator the entire year. I often had to sit on it to lecture the class.
That spring, the AF offered my hubby a great opportunity in another state. I realized that my health was not going to allow me to keep on teaching,
so I helped the school to find another Latin teacher and happily moved to Ca. That was the best decision for me. I still have trouble getting around,
but it is much better for my health to be "retired".
Listen to your body and do what is right for you.
01-21-2011, 06:41 AM
Im feeling rusty,still got the sore ribcage from my bout of pleurisy,feel a bit stuck in limbo without 'the' name.Frustrating,but i take it one day at a time.Sleep is my main problem and the fatigue,but i manage by coming here and trying to keep myself sane as can be lol if that possible lol.Hope today has been a good day for you.I miss work,or should i say a routine for my life to be able to blend in like everyone else.
Lots of love
01-24-2011, 06:40 AM
I ended up having a horrible day Friday when the cold blew in, worse than I expected even. I had a totally new pain, which was in my eye sockets and the bones in my face! Terrible! My mom suggested I go to the ER to have my blood work redone while I was feeling so bad, but I didn't feel good enough to do that. I hope I didn't miss my chance at a diagnosis, but it seemed like an insurmountable task. I ended up sleeping most of the day on Friday, and here it is Monday, I still haven't left the house yet. Working from home today, hoping to feel better finally by tomorrow. My husband went and bought me an electric blanket, which has been a huge help. Hope I am not cooking my insides with it... haha
01-24-2011, 11:57 AM
Hello! I'm currently feeling pressure from my work!
i started working for the company in August 2010, I did great with my lupus and was going to work everyday. until November i had my first and longest flare up! i missed 4 days of work and my boss was not happy and of course it happened every Wednesday and they got suspicious. So of course i had to come clean and tell them! at first they were happy to know i wasn't bull sh***** but then CYA (Cover Your A**) kicked in for them! and I had faxed over forms for my doctor to fill out so they could accommodate on how to treat my illness. December went fine for me not one sick day and I have been in contact with HR and my doc continuously but he still hadn't filled out the forms as hes busy and had a death in the family. Been sick twice in January and today is my second day and i called my boss and left a message and it turns out she wasn't in and i had to talk her boss and they didn't sound to please. I feel like I'm under prosecution and guilty for being sick. and now im worried about losing my job. Stress that should not be there.
What can I do! aside from the obvious is get those papers filled. Any advice would help!
01-24-2011, 02:44 PM
I feel so bad for those that still have to work with this disease! I miss working and loved my business but I really messed myself up Social Security wise by not retiring soon enough. I kept my business open until it was losing money and at that point I wasn't paying much into SSI. I would have been better off applying for it when I was making good money but I didn't want to give up. That was 11 years ago and I can't imagine trying to work those years. I know how difficult it is but do what's best for YOU.
01-24-2011, 03:02 PM
Yeah it is tough! I wish I had some good advice but I see where you are coming from for sure! My boss turned out to be sick today too, so she was way too worried about herself to care too much about me. (How sad that both of us are "home sick" answering our work emails, but whatever- I did manage to get 8 hours in from my couch so at least I am getting the work done!)
It always takes so long to get any kind of paperwork filled out, when you are relying on people it's a pain. The only thing I can say is that when I am at work, I try to be extremely focused, employee of the month-type yes person... lol. I don't want to be penalized for the days I work from home, or for having to do the "8 and skate" instead of staying later because I don't feel good at the end of the day.