Living with Lupus

As a Christian, I really have no outlet for talking about Living with Lupus. In my world of being a Christian, it is almost a taboo to talk about being sick, (mostly in the circle of “faith”). I do have strong faith in GOD, although, some days it’s hard to believe in healing as the pain is do debilitating. Many days I wonder if I am going to make it through the day, while other days I go on as if nothing is wrong.

This morning, as I was scrolling through Facebook, I happened upon a site called Lupus and Me. The moderator of the site gave her list of ailments and problems she is facing as a person living with Lupus. Her problems are more than mine and I would not trade places with her. However, reading that particular post caused me to think about what I go through living with Lupus and I decided to share them with you. Here goes:

“I just found this site this morning. I was diagnosed with Lupus a few years ago. At first it was just Discoid, and then I was diagnosed with SLE. I have been an enigma to most doctors I have seen and most, when they see in my records that I have been diagnosed with Lupus, want to lump every symptom to Lupus. I have a huge lump on my right eye and that eye gets extremely dry and painful, mostly at night and when I first wake up. That lump is getting a lump on it. I was recently diagnosed with Paget’s disease (yesterday) in my skull bone. The doctor said that there is a thickening of my skull. Prior to THAT diagnosis, I had been having (and am still having) severe pain in the back of my head and nobody could figure it out. I was told that I was imagining things and needed to see a psychiatrist and then I was told it was chronic migraines. I was diagnosed with Fibromyalgia and Sjogrens. My fingers get terribly painful in the cold but usually don’t turn blue. I can’t wear gloves because my fingers hurt worse when I do. My heart is pumping out blood at a rate of 11 when it should be pumping out at a 5. This causes much pain in my chest and lots of fatigue. I also have A-fib. In 2002, I had a complete hysterectomy due to excessive bleeding and bleeding which the doctors did know why or where I was bleeding from. I still get temporary blindness in my eyes where I get this burst of light which renders me unable to see directly. My mouth is dry all the time and my lips stay sore and bleeding. My scalp is full of scabs and very dry, no matter what I use for it. My feet have pins and needles out of control and the pain shots in my legs, hands and arms are sometimes unbearable. I get episodes of confusion (brain fog) and I also have episodes where I try to talk but can’t due to stuttering or just not being able to say what I’m trying to say. Sometimes my heart beats so irregularly that I think I am going to die…literally. I have inflamed stomach and gastritis. Chronic fatigue and problems with my bowels.
If it were not for GOD in my life and faith that I am going to get healed, I would not be here. I am 48 (will be 49 in May). This is my story”.

I did NOT post this for sympathy. I posted it mostly for information about this disease I live with. Most people who I associate with would not believe I have such problems as listed above, and some dismiss me if I complain about not feeling like doing simple things like walking to the store or catching the train or several buses to get to church or other places.

Most days, I press to do things. Most times I end up staying in my bed. I want to work, but when I do go to work, I wind up quitting or getting fired because I have to take time off due to being sick and because I DON’T LOOK SICK, people tend to believe that I;m making this up.
There are days where I cry because of depression and severe pain. Most times, I hide this crying from my husband but then there are days when I don’t care who sees me cry because I just want all of this to stop.

Some of you have read about the stuff I went through as a child and thought that was a lot. Well, here’s another part of my life that I felt I should share with you today.

Today is a great day. I don’t write consistently because most days I don’t feel like writing. My hands don’t feel like doing it but when I’m on, I’m on.

This is my story. Tell me what you think.

3 thoughts on “Living with Lupus”

  1. You are incredibly strong for sharing your story like this — and even stronger for living through everything you described every day. I can’t even imagine it, or how you do it. But the fact that you keep going, and keep trying, despite everything, and that you still remain true to your beliefs in the face of overwhelming odds, is truly inspiring. Thank you for sharing your story! I sincerely hope that a cure is found for your ailments one day very soon — and until then, stay strong 🙂 You’re amazing, and don’t let anyone tell you otherwise!

    1. Thank you Michelle. My oldest son, Sahm King (not what I named him at birth…lol) tells me that a lot but I don’t consider myself as strong, especially after the episode I had today. However, I do love it when my story can help others or inspire others to go on. I am actually considering showing the bloggers what I LOOK LIKE ON ONE OF MY LUPUS FLAIR DAYS. The swollen , bleeding lips, the swollen eye, the swollen legs, hands and arms, etc. I’m a little scared but I am going to do it so that people can truly understand what Puppies go through. So Michelle, thank you for your encouraging comment. I appreciate it and cherish it. Congrats on getting your books and I’d like to support you in purchasing one.

      1. If you’re comfortable with sharing a photo like that, I think it’s a wonderful idea. I didn’t even know that a disease like Lupus existed until one of my friends revealed that his sibling had it — and this is the sort of thing that needs to be understood by people in order for them to appreciate how serious it is. I’ll definitely be sending positive thoughts your way 🙂

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