Do I have to get used to this?

This being a huge adjustment in an understatement. With Lupus, you can’t just take medicine and feel better. I knew that but it sounded good to tell my family that. I have a few ok days then I’m in bed for a few.  I am now on Methotrexate, Prednisone and Plaquenil. That at least gets me to work but I am in bed soon after I get home. I wake up in the morning and it takes about an hour to know if it will be a bad day or ok day. And what is up with this cough? My throat feels like it is closing in and everything is so dry. I need a constant drink of water so I don’t have a coughing fit! The Sjögren’s is no joke! I do have a sexier, scratchier voice now (role my eyes).  This really sucks! 

Thanksgiving was nice. My son came home a few days from college. I tried to take it easy and also do some things with him. I knew if I pushed it too much I would be down for days.  I miss him so much. 

Another adjustment is realizing that while your life is at a standstill, life goes on for everyone else. It’s not that I expect people to say how are you feeling, or whatever. Well, maybe it would be nice. But people do not understand what Lupus is and how it affects you. Since it is different for everyone, they may know someone who hopefully has a normal life with it. I don’t know that feeling nor have I met or read about anyone with that experience. 

I hope that instead of this steadily getting worse like it has been over the last 6 months that I will get a break and it will level out. We can all dream!! I hope everyone had a fabulous holiday and that all my fellow Lupies have an amazing day. 


One day at a time.. 

Lupus… that is what I have, not who I am. (Lupus with a side of Sjögren’s, a little Hashi’s too) That is what I keep telling myself. But I hear it come out of my mouth. Need a nap. Can’t make it tonight, sorry. Can’t make it to work today. Vomiting. I actually got home from work and went straight to bed. Woke up and took my medicine and went back to sleep. I have learned over the past month that I need more sleep. If I work 2 days and only get about 8 hours a night, I will have to sleep more by the third. I’m learning. I’m having to listen to my body more. If I do that I will have better days. A better day lately is not having this weird headache on the top of my head. It is like knives stabbing repeatedly. Eating is a chore. Nausea is a constant. Stomach issues are never ending. I am starting to notice the improvements that the plaquenil will give but my stomach hasn’t gotten the memo. My itching is better but some nights I can’t claw my ankles off fast enough. 

So Lupus is what I have. It is also apart of me. Who I am. Even though I was diagnosed a month ago, I have been suffering for years. One day at a time it will get better, now that I know what I’m dealing with. ❤️