Hi all I’ve handled yrs with FM (not easy) ,diabetes,endometriosis and depression but Lupus is so new and unknown to me.
How many of you are still working?
I was working full time at a job I adored but have been off now more than 5 mths. What can I realistically expect in respect to returning to work.
Thank you Mel so much.
Your right about looking better than we feel.
Like Fibromyalgia (FM) it is often an invisible disease.
Hi again, Wen. I work full time also with computers. I was diagnosed with OA at age 18 and now have a couple more types of arthritis. However, Lupus has thrown me for a loop. I pace myself more, try to plan ahead for large jobs, take my breaks and lunch. For years, I went without both. I find that I must have quiet time for a few minutes during the day even if I have to lock my door. Fortunately my co-workers know other lupies and give me a lot of support. Some days, however, I have to force myself to get up and go to work. My students know when I’m having a bad day and cut me some slack. I love them for that. Good Luck
Wen, please call your SS Dept and ask to please send you a form via mail to fill out so you may collect disability ins.
Most will be turned down the first time, but you then can apply again. They will explain it to you.
They will then give you a test by a medical doctor and therapist. It will be a physical and a memory test and ask you some questions: Who is the President after Ford?
What is the name of a river? They will also give you 5 things to remember. At the end, they will then have you repeat the same.
The doctors are more aware of the problems of Lupus than they used to be. Be sure to have every piece of medical work that was done for you: Ex. all blood work, bone scans, etc. and doctors information.
Thank you Mel
I’m from Canada do you think it is about the same here?
Right now I am waiting for a responce on a LTD from my work place. I dont know how much they pay and for how long but will have to do research. It’s hard as I’m so tired and have a hard time getting around at the moment. I appreciate your info sooo much. Are you working Mel?
Hi Wen,
I am fortunate that I don’t have to work, and in Canada, I don’t know where you should go…but your doctor would definitely know.
When you have your appt., tell them you are unable to come in person because you are afraid of germs…which is true.
They should mail them to you. For a court hearing or whatever there is where you must show up for testing, bring a cane. If they hold your hands, says ouch. Don’t be happy go lucky. Since we don’t look sick, don’t wear make-up, wear sweat pants and sneakers. If you work at the same place all of this time, have your boss write you a letter confirming you’re too ill.
After they check you, use the hand sanitizer.
Thanks for the advice on getting disability. I have one more year to work and I want to try. It’s very important to me (for my sanity) to hold onto my “other life” as much as possible. I wear dark glasses whenever I’m in flo. lights. Use santizing wipes for my keyboard and phone. Keep hand sanitizer, never take flu shots, don’t like crowds anymore. I’ve walked out of drs. offices due to their attitudes. Lupus is attacking my heart and lungs. It’s very painful to breathe some days and I get choked very easily. I take Prilosec for this. Tylenol PM helps me sleep. I want my “other world” back and I’ll never have it. Since I live in the South, I love the sun. I used to stay out in it all day. No longer. Just short periods of time. I really get depressed when my face swells, my eyes sweel shut and I get welps on my exposed skin.
Nanny, we all understand what you’re going through because we are too.
Whenever I have to go to my pulmonary doctor because of my lungs…I get nervous…so my blood pressure goes up.
In fact, with every doctor now.
The Pulmonary doc gives me a treatment and inhalers. If necessary, an x ray to make sure I’m not coming down with pneumonia. I also take mucinex which can be found over the counter. Truthfully, and I don’t recommend this to other’s because we all have the same dx but different symptoms, I stop taking them as soon as I feel better.
I also had to go to a Heart doc. (This runs in my family along with every other possible crummy DNA gene) He did a sonogram and I had a thallium test I came out fine.
I find that some things may last for a very long period and then other symptoms last 2 weeks before it heads someplace else.
Mel do you get a painful chest?
If I breath deep it hurts and if I sneeze WOW it kills and a deep cough…
How can they tell if it’s affecting your lungs?
sorry so many questions!!!
Mel do you get a painful chest?
If I breath deep it hurts and if I sneeze WOW it kills and a deep cough…
How can they tell if it’s affecting your lungs?
sorry so many questions!!!
Wen, yes. You must go either to a hospital or to a Pulmonary doctor! They can tell by listening to your chest.
We are also prone to pluerisy along with pneumonia. It would feel as if you’re having a heart attack.
You also seem to need an antibiotic. If you have a primary doctor, then let him/her listen to your chest if you can’t get to a Pulmonary one. Drinks LOTS of fluids and get that mucinex. This will help break up the mucus.
Are you running a fever?
no fever
The problem I’m having right now is this. I’m off work for my hysterectomy and endo and then had a bad drug reaction that hospitalized me ( was going into shock)
and never started getting any better and in a lot of new areas worse…they and I were putting it off to my FM and a flare but I knew it was different. They’ve been sending me for all kinds of test colonoscopies and scans and xrays and blood work with a bunch of different doctors. A new yound internest finally said well all these symptoms alone and seperated can be blamed on your thyroid, FM, diabetes and such but together it looks like autoimune disorder.
So she sent me for more lab and ECG and such …My GP got all the results and told me that I have Lupus and read me the lab results. (this was before the follow up with the internest). Yesterday I went to see the Internest for the last time (as she is about to pop with a new baby boy. 
) She said everything is pointing to Lupus but I am not an expert on Lupus so I am going to send you to one In Ottawa. Our nations capital. I need to go Monday for another whole whack of x-rays and blood work again.
So do I have it or not . I feel up in the air. My Gp is no good at all …only good for scripts. She gets all nervous if you have something she can’t handle. She just wants to hand me off. and really I know I cant trust her judgement and there are no doc taking new patients here for years now.
Wen, that is the best news! If you don’t have copies of all your tests, ask the hospital to call the office and to fax them.
I am supposed to have the digestive tract tested too. I am afraid! I had it done in 1982, and I was screaming because they didn’t put me out. Than they did another test in the hospital where they put a flashlight or something down my throat…they put me out of that one. My doctor now told me HE PROMISES it is not done like how I had it done so many years ago, and it is not painful. Is It?
I had a terrible morning today. Diahreah and pains for hours and then the blood comes…oh yeah, one more thing to freak you out, add vomiting and a bloody nose. Sorry for the visual
When I had all those creepy tests, the only thing I remember is that they said I have a kangaroo stomach.
Okay, so now I’m a kangaroo!
Oh BTW My dear Internist is sending up a whole package to this Dr.Patricia Morassut. I hope she’s nice . I’ve gotten gun shy now with doctors. I always feel they prejudge and think I’m trying to pull something . I guess I’m paranoid.
But I’m so tired of trying I just want to stop…stop it all just dry up and blow away…Do you ever feel like that.
I’m fighting it real bad right now. Poor hubby kept saying “hey hon you just got to snap out of it now” He meens well…I’m getting tired of fighting and it may take long to see this new doctor. What a whiner Oh well this too shall pass.
Thanks for listening all I wouldn’t know were else to go right now
Alright you just leave me hanging like that?
A Kangaroo stomach hee hee!!! Do you have a little pouch Mel? You can tell us. You must be cute when you hop.
Do you have any problems with your bowels. It’s a on goind thing with me know. I guess it’s IBS but it sure has gotten worse ( my little Australian hopper ha! ha!) Notice my maturity level when I’m tired
Yes, I am a hopper…for sure! Perhaps when I am bloated that is actually my kangaroo kid popping out to say hello
I have been always sick. My Mom told me they thought I was a Celiac baby at birth. Since then I have been dx with Mucus Colitis, spastic colon, IBS, etc. etc. I take it with stride and part of my life.
When I was a kid, I also had mono for 6 months.
When my brothers came down with Chicken Pox and the mumps, I did NOT got them.
When my own kids came down with the Chicken pox I also did NOT catch them.
What about everyone else? Perhaps the lupus attacked the virus?
Yes, I have been on the verge all of the time of just “forget it”… I am an interesting case to the docs because I have been dxed with everything within 2 weeks! The good news is once I call, they always fit me in to their schedule and know I’m not feeling good.
I gave up and stop having all the tests. Especially since I was also dxed as having MGUS…which mean pre multiple myeloma blood cancer…blood cancers run on both sides of my family and so does heart disease affecting each generation.
Since 1995, when I was finally dxed with all of this…due to a lot of stress, I had to see my oncologist every three months. My IGG is sky high and my IGM and IGA are too low. Bone marrow biopsies, dexa scans, cat scans, blood
<I’m surprised I’m still have blood!> One time, 5 doctors had to read my bone marrow biopsy to see if it was cancer yet because it showed 30% cancer cells. The next time, it went down…but never 0
I couldn’t take it any longer. I told my Onc, I am not going every 3 months…I will go 6 months…I am no longer taking all those tests…The same with the rest of them. They made me have MORE stress!
This lupus crap I take with stride. I have had such crazy symptoms, it would blow your mind. I need HUGH LAURIE from HOUSE!