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Life With Lupus

Helloooooo


#1

I am Tracy, and I am newly diagnosed with Lupus, Celiac Disease and Diabetes. I worry about my eyes, they are drying out; but thankfully no damage.

I'll see my Rheumatologist (Love Him) tomorrow.

I know how hard it is, and I understand alone. I was diagnosed at 46 years old. I spent all of that time pushing so hard and taking judgments like blows to the head. Especially after so many years.

no one believed me when I tried to tell them. Not family, physicians, and everyone else in the population.

My mother, grandmother, and sister all have related autoimmune illnesses as well. Treatment is so much more amazing since they had the illness. Quality of life is better as well.

It is difficult, I get so frustrated with slowing down to a crawl or a halt, but I have learned that if I go ahead and sleep the 15 hours on the weekend, I am more prepared to go to work.

I have really struggled to work, but being on disability can be just as much work with all of the paper work etc...

I am fortunate to have a place to work that allows for a reasonable about of my disorder. They are more understanding now that I have a dx. because my verbal communications skills have suffered. I have trouble remembering things.

I have to go I am at work. I'll try to check in more often.

I hope you have a peaceful day today!!!

Love and best wishes,

Tracy Jones!!


#2

Hi Tazjones, lupus is one of the invisible diseases that makes it hard for other people to know when your flaring or feeling sick. I agree it is so hard to slow down and even ask for help. If we don’t slow down we pay the price for several days. Seems like your getting a nice sleeping routine on the weekends that’s great! I also have severe dry eye so to help it I go to the eye Dr every three months and get plugs put in all four of my eye ducts. It helps a lot! You may still have to put drops in your eyes but the pain relief from the dryness is amazing! Take care!


#3

Hi Tazjones.Lupus is a tough invisible disease to deal with.You are a strong person to be able to work with lupus and your other conditions and have understanding superiors.I havent been offically told yet but my gp mentioned to me(he yelled at me) the words "you have lupus".It is hard being on disability you are right(im on it myself)I push myself too much, you are right its time to slow down and rest more.It is good you sleep well on your days off.It have been be fustrating for you for no-one to believe you.It took be around 8-10 years to get to this point where ive had an mri done and getting taken seriously though i am 27.Take care and much love :)


#4

Welcome Tracy, and thank you for sharing a little bit about you!!