Still having problems getting regulated and felt my boss was watching me so I took FMLA
I still sleep 24 hours a day, look around the house thinking I need to do something but the day goes by and nothing gets done.
I have read eating better is good but don't feel like cooking.
Exercise? Same
Ideas on how to get myself back to work and being productive

It's all about baby steps. Starting out with one small thing and than eventually building onto that. Maybe it has nothing to do with what you should do but with what you would enjoy doing. Do something for yourself that you enjoy and when you can do more you can do something good for you such as healthy eating or exercise. Good luck in getting back into a routine of life, I know you can do it. Tons of hugs.

thank you reddog.
I know you gave me a lot of advise regarding getting away from my "stressful, stressful" job.
I am trying to figure out my next step.
I really don't see how I can go back there but $$ might make me go back and use some of the coverage intermittently,
Hopefully I will get better soon as I know they are watching me now.
I do have LTD but I'm afraid to talk to our HR person because the company I work for is large and uncaring.
If they know I am even considering that step they will stop my FMLA right now and fire me. I am becoming a liability to them. From what I read there could be a year to 2 yr wait even for LTD to start if it's because of a condition that is known.
It's getting scarier each day as I don't have 2 years of survival money set back.
You would think that after 2 weeks I would be feeling better but it's actually going the opposite direction. My Dr. thinks it's due to stress.
I do believe people feel better when they are doing what they enjoy.
My hobby used to be gardening but I took it out recently as last year I never could get out to work in it and I don't want to look at weeds again this year. ha.
Guess I'm kind of mourning that also.
I just don't see why I am still sleeping so much. I should have more energy now that I have more time (for now).

Hi J,

My hobby is gardening also. I am out of work on disability and I thought I would be able to keep up with it this year. Boy do I understand about the weeds, I also am not able too tackle anything in the ground. I am too weak and exhausted. My husband bought me some pots and annuals. I found these were easy to plant up and the pretty colors are nice and cheerful on our deck.

I also had to sleep a lot of hours 12 -15 when I first started getting really sick. Now I find I sleep about 10 hours but I need to stay in bed awhile reading or playing games before I feel like I can get up. I still need to lay down periodically throughout the day.

As for fmla I think you are protected by law and can not be fired while on it. I have a lawyer helping me with social security disability and this should help to speed things up. If you were to consult with a lawyer ( consultations should be free) you could ask about your concern with being fired while on fmla and checking into disability.

I know it's a hard thing to go through on top of being sick, it's a lot to handle. Just know that I am here to give you any support and help that I can, you are not alone.

Take care,


I have bought pots and flowers also, I have to have some color :)
Just missing my large garden as its been my hobby for years.
How long have you being trying to get SSDI?
Did you have long term disability?
I have called one attorney's office (small town) and was turned off by the receptionist. As we were talking she mentioned having 2 friends with lupus and they were doing fine.
We all know that everyone has it at different levels but her responses just made me think that they were not right for me because she obviously didn't get it.
Of course she wasn't the attorney but it didn't give me a good feeling about having them represent me!
I intend on looking further, might have to go to the next city.
Other friends of mine that have this disease are about 1/2 and 1/2.
Some have it controlled and are still working, others are on disability as they simply cannot.
It would be easier for me if the LTD just rolled over from the FMLA as I could then survive with cutting back on some things.
Just SSDI would be a stretch.
I'm about 2 years away from having the house paid off so that would make a BIG difference.
It is the energy level that I think I struggle with the most also. I get up, begin to move then its bedtime.
Not funny but then it is funny --
Keep me informed about your SSDI.

The first months after diagnosis was really exhausting. Not only the disease, but seeing 2-4 docs a week, plus stress about the disease and being afraid.
Thankfully, it does even out a bit and by that time hopefully your energy will improve. In the meantime energy bars, high in protein for when I just can’t cook. Food makes a huge difference :slight_smile:

That's a good idea.
Im anxiously awaiting the sleeping for 12 hours and still waking up tired to go away!
My doctor has me on plaquenil (which I don't like) but nothing else to help with the headaches or back pain.
Ive talked to him about it but ....
I find sometimes even the doctors don't really understand.
I will buy some energy bars next time I'm at the store since I have been "grabbing" whatever is around and thats not usually a good thing

I am currently on long term disability and I have just started to file for social security disability. I have been procrastinating on it even though I have an attorney. It's just a ton of paperwork to fill out, which I need to do and the attorney takes over from there. My doctor did tell me there is no normal for lupus. Your right it affects everyone differently and at different degrees. Hopefully with time on your meds your energy level will get better. I do try and drink fresh juices and eat a lot of fresh fruit and vegetables. I try and stay away from carbs and starches. I think this helps me. I hope your flowers help to brighten your days and remember your garden will wait for you when you can again come back to it. Hugs

Did you LTD go straight in after FMLA or did you have to wait a year or two?
I am re-reading my policy and it does look like it would just move straight over however I would get about 1/2 of what I make now and I would pay for Insurance.
Is that what yours is?

My ltd would not kick in until I was out of work for 6 months. I was on fmla when I applied for ltd and getting paid sick days through my company. My ltd money is 66% of my regular pay but they do not take anything out of it ( taxes, 401k, ect. ). Yes you do need to pay for your own medical insurance. I am lucky because I was able to be added on to my husbands. With no taxes being withheld when you file at the end of the year because you are disabled a tax accountant can file a hardship so that you are not penalized. Also if you do file for ltd if you have any 401k or pension something will have to be done with that because you are leaving the company. In my case I was considered retired because of the amount of years I worked there even though I was too young to retire. Hope this helps. Let me know if you have more questions.

very good to know.
I was under the impression that if you basically "knew" your condition was not going to allow you to come back then they could let you go while on FMLA, or cut it off.
So did you file for LTD right when you went out on FMLA or did you wait?
I just got the approval for FMLA today.
Also, LTD at 50-60% would be better for me than SSDI.
Does the company still pay what the LTD amount would be or do you drop down to SSDI's amount?
Sure wish I knew more about all this --
Would be nice to have the husband with Insurance but NOT the one I had ;)

I applied for ltd after I was out 2 months. They dragged their feet approving me and wanted a ton of paperwork. I think it took awhile for them to approve me because I didn't have a diagnose yet and I was slowly developing more symptoms. Once I had my lumbar puncture and they had a neurologist look at the results I was approved immediately. For ltd your insurance company might be different, I called mine and asked them all the questions. For me when I get ssdi my ltd will only pay me a difference if there is one. I am thinking that my ssdi will be higher though than my ltd because of the way my income had been the last few years and the way they look at that. Also my ltd only lasts a year and they are requiring me to apply for ssdi. I know this is all so complicated and for you scary being by yourself. Hope this helps.

very scary!
I'm afraid to go back because I can't say I will be able to be productive and I'm afraid to not go back because If they didn't approve it I would be in deepppppppppppp
I go to the gastro tomorrow (first visit) to see about my liver.
Maybe he will have some ideas
Why wouldn't they approve yours at first?
I have lupus/RA at this time but I'm having issues with the liver and lately I have noticed my head shaking a little. We are watching that as the doctor said she thought it was getting worse.
Now that really would be bad ....
Gotta be home to take care of my fur babies so NO hospitals please
what did your lumbar puncture come back as?

When I first applied I didn't really know what was wrong except I was having chronic vertigo and felt very sick all the time. I also had chronic migraines, terrible balance which made my walking bad. My family doctor had me taking physical therapy. It was the physical therapist that noticed I was starting to tremble and have involuntary movement and episodes of non responsive trances. Because I didn't have clinical evidence of a diagnoses (symptoms are not enough) they dragged their feet for the ltd. The lumbar puncture showed an excessive amount of immunoglobins in my spinal fluid which I was told is indicative of cancer, ms or lupus attacking the nervous system and brain. That was the first thing to give them clinical evidence because my bloodwork would only show a positive ana with a high titer but everything else wouldn't be significant enough.

Do you have someone who can take care of your babies if need be? It might be good to have a plan just in case. I had ended up in the hospital a few weeks ago for about four days just all of a sudden. They said the blood supply was cut off to my colon which caused part of the colon wall to die. They are now doing tests to see if the lupus is attacking my blood or arteries. With this disease you just never know and it's good to be prepared. I love animals and I know going into the hospital in an emergency situation is stressful enough but if you don't have someone to help it makes it worse. I hope everything turns out well at the gastro. Let me know.

Take care,


Oh no! Did they have to do surgery or are they staying with tests at this time?
That's a new symptom to me - this surely is a scary disease.
Let me know you're ok!!

As for my Gastro I liked "him" but questioned what all he said.
Of course his job is to make sure we are taking care of our insides more than knowing about the actual disease.
I agree with eating better, etc., but he said he didn't think I have Lupus which surprised me because I know how to read lab work and it says high titer right there.
I'm not sure if he was trying to get a response out of me (I have heard he's pretty hard nosed) or if he is the type that just believes that eating correctly cures everything. :)
I do plan on going back to him anyway to let him do some tests.
Unfortunately I had my gallbladder out 2 years ago and because I do live alone I asked the doctor to just flip me over like a pancake (ha) and do the colonoscopy at the same time so I don't have to call my daughter in from Colorado twice.
The gastro said that report wouldn't work for him because the doctor that went ahead and did it "thinks" he can read colonoscopies but he is not certified to know what to look for.
Isnt that just great -
I know several people that have used him for theirs but I really do want to know its done right.
He also wants the scope (down the mouth) done which I already figured he would.
I have severe IBS.
I mentioned that and his response to that was that was a word doctors came up with when they couldn't figure out the real issue. It's kind of funny in a way but he is also a highly intelligent man with a lot of experience I just think he has his own opinions :)
What does scare me is the time it takes to get into specialists, etc.
we talked about my job and where I stand. He said he wasn't going to mention that I was divorced with no back up unless I did then smiled. This tells me he knows where I am mentally and said he believes I'm depressed. Of course I'm depressed! My whole life it changing and I don't know what to do.
We talked about my choices - get myself back to work and show them I can do this because seriously my job pays double what any other jobs pay in my town for a girl without a college degree OR take my chances if I really don't think I can do this and hope I'm accepted. This is making my decision as to whether I go for it a lot harder as I know the job I have will probably kill me (wait, it IS killing me), I'm not sure that I can be up to the standard you need to be anymore because my body wont allow it to be but you know I cant be without money either.
Also with him saying he didn't think I had Lupus, that will be on my record (even though I can see it says its high.
Now the Anti DNA did go to the negative side which is good (maybe the plaquenil is working) because they have been running in the 100-200 range and should be around 30 at the highest but the Homogeneous pattern states High titers - SLE. There are other things listed, Nucleolar - high, Speckled - SLE, MCTD, Scleroderma, Sjorgrens.
I don't know how to read his particular "scales" as to how he measures things but it all looks like this was their findings --

I am going to talk to my accountant next week and I'm looking for a disability attorney just to get some info because I am reading online something about pre-exclusions for existing conditions are in many LTD clauses. This could stop me from being eligible and I cant go on just my savings.
Sorry so long but my brain is on overload.
Thanks for listening

Luckily I didn't need surgery. The colon can repair itself to a certain extant. I was on iv antibiotics and than sent home with more antibiotics. They are doing tests to figure out the cause. My dr has me off the cellcept until it is figured out. I am doing well right now.

Was it the gastro that said he didn't think you have lupus? It'sreally your reumy's opinion that counts. Do you feel like you can work everyday? When I stopped working I knew there was no way I could be dependable on a daily basis. There were too many times I was too sick to go in or I would have to leave early. I just couldn't do it anymore. Do all your research so you know were you will be financially and than make a decision that will be right for you both physically and financially. Good luck.

And NO, I don't feel like I can go in every day and work. I know I will be calling in but I will have a few months of FMLA still if I go back soon.
My Rhuemy and PCP say its lupus which is why I was surprised by the Gastro.
I go to my PCP tomorrow and will discuss with her that I am going to have to be put on something more to get rid of these headaches and get some energy.
I know cortisone is not good for you but it was keeping me going for the past 2 years when we thought I had allergies.
I am almost to the point of checking to see if there is a place like John Hopkins where all the doctors will be on the same page and working together to get me back up and living (?)
Reality sucks

hope you can say that.............

I'm really lucky in the respect that my rheumy does call all the other drs and talk with them even though they are through a different hospital.

When it comes to your paperwork for ltd ect. if your rheumy says its lupus and he is treating you for it than that is what counts. Lupus is not the gastros area of expertise. As far as the energy my doc said it is all part of the disease. I am hoping with treatment and time there will be improvement. Good luck with your appt. tomorrow, let me know how it goes.

I was reading you response earlier about the colon ask repair itself to some extent. I never knew that, interesting.
I know the liver can but didn't know anything else could.
That's good to know that the gastro's records wont affect anything. I went back thru my records and Lupus is one of the symptoms all thru them. I really think he just has his own views on things.
I was wondering, do they have you on any medications that you feel really "helped" you a lot?