Worn out and used up

Hey all, I’m new to this post but looked up lupus and the stomach bug and found this. Got really sick on Monday. It’s now Saturday and I’m sitting up so that’s an improvement. Not working anymore. Left my teaching job three years ago. Was a preschool special ed teacher. Talk about a germ filled environment. I’m 55 years old but feel like 100 right now. I know logically this will get better I just hate not living my life while lupus rules. I’m even sick of people being understanding. I want someone to be mad like me. Sometimes I feel like I’m under house arrest. I still don’t understand this disease. Was diagnosed last year but learned that I’ve had symptoms for years. Guess I was “lucky” to find the right doctor who knew what to ask and look over my medical records correctly.
Anyway, thanks for reading my post. Karen

Hey Karen, I’m your girl! I hear you and I am mad as heck.
Sorry about your incarceration....how much time served do you think?
I was officially dx’ed in 2006 but know it existed long before then.
I’m 57 and feel pretty much like you. Not sure how to be positive for you or if it’s right to be. Being positive about such a thing sometimes for me adds insult to injury. You know as well as I that
there is nothing positive about something like this albatross running your life.
I know, I know, I can hear them.....but you have to be “positive”, which just means you have to dummy down your intellect until another day on the couch, probably alone, is a good thing because it is allowing your body the rest it needs...yadda, yadda, yadda.
I’m so done with that scene, it’s been a zillion years and nothing is good about having Lupus or any chronic life altering illness. It just sucks period. And I am not apologizing for feeling that way and no there is nothing wrong with my emotional state.
Having said that, what I do know is that there are very dear souls out there who are dealing with lots worse, it is for them I keep going. It is for them I work everyday to kick some Lupus @$$!
The way I do it? I guess by giving in to it. If I see it as the worst adversary that seems to want to antagonize me at every turn, I just don’t let it. I refuse to fight with it, it’s like working with the most difficult people you know, pointless. They are what the are and wasting time being nice nice to them doesn’t help so don’t waste time and energy on them....just let them go period.
They are what they are and Lupus is what it is. I guess that might be acceptance. Acceptance can take you far and it is a great pressure valve for the “mad”.
So a special ed teacher, how long? Bet you have some great tales to tell.
I am an office manager...well more or less now.
Some days I am a cat feeder, I have two fur people that are very funny one really old guy and one young I have funny stories about them too.
Some days I am a baker. Some days I am a landscape designer (just moved to a new home that needs some flora and fauna). Some days I do lunch at the local diner and groceries and a nap.
Some days I paint and create art. Some days I take long (slow) walks on my farm or on my elliptical and via my iPad walk cities all over the world.
Some days I visit a friend or someone who needs some help. Some days I listen to other people who have no idea about being me talk about their jobs, like their job is who they are.
Ever do that? Go to a gathering and listen to how many people define who they are by their job?
That is very interesting to me, knowing that one’s job is absolutely not who they are.....who they really are happens after hours.(or when you get dx’ed with Lupus)
Anyway hope this helps, keep being mad, it’s good for you, so is honesty, and finding out who you are and can be outside work.
Don’t forget to pay attention to the albatross, feed him your meds, drag him to the doctor if he needs to go, and give him some space and antagonize the heck out of him by not fighting with him.
XO have a good one. Tuffymason

No sand in my Samich......too funny....funny ha ha....
also funny....but funny hmmmm.....I am also an over achiever....I have deduced many of us are...
How are you doing today? Have things settled a bit or do you now know you have to stuff yourself and the albtrossinto the car and go see the doctor?
I finally found out some of my words finally did get to God’s ears...(took long enough, is he a bit hard of hearing or something?)
For an MRI of my cervical spine and head.
Been struggling with gastroparesis since Jan, can’t eat, nausea and vomiting....just a real fun gal to have around!
Also lost some hearing in my right ear, blurred vision in my left eye, and the balance of a drunken sailor. Vertigo, some weird breathing gulp things and cognitive disfunction, terrible pain in the mastoid bone and some lymph node swelling in front of my ear.....everything on the same side.
My best guess, inflammation in my spine agrivating nerves, including vagus that runs everything.
Or a small stroke.
Or a pinched nerve in my cervical spine. But I have been asking for some diagnostics since February....and Nothing, nada, zero.... until now....and who knows how long the MRI booking are...
I get so fed up being labeled as “chronic”....which might as well be a large scarlet “C” on my shoulder.....the thinking.....well you are supposed to be sick....so we’ll just wait and see....
So annoying.....what if it’s just a clogged ear tube....I have Sjogren’s too....chronic folks can get acute problems too.....my nurse practitioner didn’t even look in my ear or anywhere.....gees!
My funny kid story.....it was just before our wedding (about a zillion years ago now)....we had a rehearsal dinner and party my niece was our flower girl, she was 3.....the evening job jab was prroticols...who toasted who.....the next morning when my sis got her little one up and dressed...a little voice said....well, are they going to get her out of there?....sister says who? Out of where?
“Auntie...out of the toaster”.....poor little kid thought about that all evening....and still was concerned the following morning....
Take care tuffymason

Welcome, Sparrow11!

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Best wishes.