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. 


2 thoughts on “Do I have to get used to this?

  1. I totally understand the part where you wrote about life going on for other people while yours stands still. My friends (the few who are left) and family are very tired of hearing about the lastest or lack of information for thyroid diseases.
    It’ll get better for you. Hang in there.

    Liked by 1 person

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