You are not alone

Hey Tim, we are right here with you. It sucks buttermilk, our good days can be rare, took me a long time along with the help of my drs to find the right medical combo to help combat my symptoms. My labs are stable but I still have plenty of days where lupus and its cohorts win out. I try to manage my symptoms, rest and hydrate when needed. I always tell my dr, I get maybe 2.5 weeks a month where I can function fairly well. Most days I have about 3 hours that are "good-ish" a day so I try and use that time wisely. We are all swimming against the tide, the key, like Dory says, is to just "keep swimming".

Speaking on behalf of my husband: one day he was pretty healthy for a 51-year old and within 6-months he feels like he's facing a death sentence (10-15 off his life-expectancy which would be in 3-7yrs AT BEST). So how does he function? He's a rock on the outside - just keeps going. Doing the next thing. Check the box. Go to church. But on the inside he worried he's going to die and leave me in debt with the kids/house/car (I'm 41). That's heavy on him. On me. In the whole house. On top of lupus, he also has lung issues, liver, hypertension, edema, pre-diabetic, and nephritis class 5, CKD 3B.
Tim, you've been in a long, unfair battle with a body that doesn't play nice or linear. MANY learn how to manage their symptoms, reach remission, and return to a better lifestyle than they used to think was possible. Sometimes the right rheumatologist/specialists & medication regimen is the key. That's how you might be able to function. It just so happens that my husband's "functioning" right now is deep depression, grief, and trying to fight the inevitable a little longer. This is new to us. Even if/when things get worse - I want there to be joy in our home. Gratitude for the love and time we have.
I don't know if that was the question, but... 🤷‍♀️😞

Hi Tim, I’m really sorry you’re going through this, and I wanted to say you’re not alone. I had symptoms of lupus but no diagnosis until after I had Covid. It seems like Covid really kicks symptoms into high gear. 😕

Sending a warm hug your way, brother.

I am so sorry to hear about all your pain. But these diseases are very painful. You have to listen to your body and only do what you can do everyday. Sometimes you feel defeated cuz you can't do things you want to do. Try to stay as strong as possible that's all we can do. You're in my prayers big hugs