When I first learned of my diagnosis I was relieved to finally find out what was wrong. I felt so scared, and just plain shocked that I had an autoimmune disease. A DISEASE.
dis·ease noun \di-ˈzēz\ : an illness that affects a person, animal, or plant : a condition that prevents the body or mind from working normally.
Me.
My body.
Once I started to learn more I knew I would live. But until they find a cure, my life will never be the same.
And now? I miss being 100% healthy. Lupus affects my daily life in many ways. I have to make sure I take good care of myself. My health has to be much higher on my priority list. I have to take medications. I have to stay out of the sun. I have to get plenty of sleep. I have to try to keep stress levels low. I see my doctors often. I try to avoid certain foods. I try to keep warm so I don’t have a Raynaud’s attack. I constantly watch for signs of a flare: hair loss, fatigue, facial rash, achiness.
I miss being full of energy. I miss not having to take multiple pills, every day. Some days I wake up with zero energy, and I feel sleepy and dazed all day long. I never know when I may go into a flare, and if my disease will get worse. I can go for days feeling great and then have a bad Lupie day, I just never know when it is gonna happen. I am disappointed that I can’t always do everything I want to do. Even though I have the best physicians ever, I hate having to go see them so often. Sometimes I feel betrayed by my body, and I am battling my body daily to stay healthy.
I wish I had taken advantage of the energy I had before. I wish I had started taking better care of myself earlier on in my life. I wish I had been more grateful for my health.
Sometimes I feel like maybe if I hadn’t done unhealthy things I wouldn’t have lupus. I know in my right mind that it isn’t the case, but I think when hard/bad things happen we want something or someone to blame. “THIS is what caused my autoimmune disease.” We want a cause. This is one of the greatest mysteries of lupus, what caused me to have this?
How do I feel about my life right now? I am fighting some major depression. I have lupus, and am still coming to terms with it and dealing with everything that comes with it. I’m coming to terms with being a person who has lupus. I still feel angry sometimes. I think it is going to take me a long time to be ‘okay’ when I have a flare or new symptoms. I don’t know how I will react if it worsens. Though I’m not sure what my future holds, I am still going to try to do everything I wanted to do before I knew my diagnosis. I want to use this and make it good, somehow.
I really am a very fortunate gal. I have an amazing husband, someone who loves me for me and is there through lupus and beyond. I have a family that supports me and would drop everything if I called with a need. I have a great job. And while I have a long commute, I have transportation. I am not having an active flare, and I am even (slowly but surely) tapering my dosage of Prednisone! I have some very, very good days. I have physicians who listen and act and support me with my decisions. I have two ornery, but sweet little pups who cheer me up and are always happy to see their mama.
You are just a part of who I am. You don’t define me. You don’t win.
-Me
Hi Erin! Once again, really enjoy reading your posts. It’s like you pull the thoughts right out of my head sometimes! I hate to be all “misery loves company,” but it’s reassuring to me that you were diagnosed in 2011, just like I was, and are still coming to grips with life with lupus. I feel like I should be able to be OK with it by now, be able to accept it as the new normal, but from time to time it still hits like a ton of bricks. Still, I work hard to focus on the positive and make the best of the blessings I’ve been given in this life, specifically my two beautiful children. I may not be able to be the mom I once envisioned, back before lupus hit, but I’m the best mom I can be, and I’m learning to make my peace with that. Take care of yourself!
You are doing all the right things! That is what I am trying to focus on now also: being positive, and just being what I can. Thanks for reading and commenting, I always love hearing from people!