I was diagnosed with discoid lupus in 2009. A skin biopsy that I was sure would come back as nothing, was actually something. I immediately googled it and subsequently, completely freaked out. I was told that I need to wear high SPF everyday, that I need to avoid being out in the sun (I love the sun, by the way), and that I could also have systemic lupus, but they would need to run more tests. Well, a few of those blood tests came back showing something was up, but nothing really definitive. I was told to wait and see if I got any symptoms of the systemic form. Then the random joint pain started.
In early 2009 I had my first joint injection, in my right hip. At the time I had no idea that I had lupus, so when the orthopedic doctor was baffled at how I had an injury usually associated with car accidents or falls from high places that I had no explanation for, I brushed it off. I got the steroid injection and felt better, didn’t think about it again. Then in 2010, my left shoulder pain started. Now, this time I had actually fallen down my stairs a week or so earlier, so I didn’t think much of it. Radiographs showed inflammation so I got another steroid injection. The pain went away but came back about 7 or 8 months later. Then my back went out leaving me alone, screaming in pain in my closet one morning feeling very scared and helpless. I was told by the chiropractor that inflammation in my right hip (same hip as before) caused my pelvis to shift therefore pulling on my lumbar muscles eventually causing them to contract and spasm. He said this kind of thing was usually seen after car accidents. I just shook my head as he kept pressing me for some event that would have resulted in this injury. I know I have systemic lupus, I don’t need any blood test to tell me that. Now, my left shoulder….again. Lupus. Stupid lupus.
Lupus is one of those diseases that likes to hide. There is no specific test that can be done. There are a handful of blood tests that could suggest lupus, but generally it’s diagnosed by a combination of symptoms, blood work, and family history. I have yet to get a definitive diagnosis based on my blood work. I go back on Wednesday for more testing, maybe this time my blood work will be out of wack considering my lupus is as active as it has ever been right now.
It’s my own body attacking itself for any number of reasons. I could get a mosquito bite and end up with a lesion in the same spot 2 weeks later. I could get stressed out and a week or so later, a joint won’t move. It’s random and very frustrating. Mostly, it makes me embarrassed. I don’t like to be seen without make up on. I feel ugly without it. I feel ugly most of the time with it on too. When I look in the mirror, I see the lesions and the scars and the butterfly rash across my nose and cheek that never goes away. Growing up I was constantly reminded of how pretty I was. “Oh, your daughter is so pretty”, “you have the prettiest eyes”, ect. It was never about how smart I was, or how beautiful my heart was, or how funny I was….it was always about my looks. So, when I was diagnosed with lupus, my life changed forever and so did my “beauty”. Now I have scars all over my arms, bumps all over my body that takes weeks to go away, and a desire to hide under my covers so nobody sees me. I guess now I feel like the girl who “used to be pretty in high school”.
This is not something that is going to go away; this is something I have to deal with my entire life and it could get a lot worse. I’m tired of it already, how am I going to last a lifetime? The thought of it all just makes me cry.
I was listening to Phil Wickham’s song ‘You’re beautiful’ yesterday on the way home. I couldn’t help but think about how I’m not sure I’ll ever find someone who will see me without make up on and HONESTLY say, “you’re beautiful”. It makes me sad to think about. Not only that, but what happens when my body is broken and I can’t do things?! I don’t know what scares me more, burdening a future husband with my health problems or not having anyone around to help me.
I have no control over this. There is nothing I can do about it. I try to stay positive, be grateful that it’s not worse than it is, trust that someone will come along who will love me for me, continue to be active and not let it dictate my life, and to be thankful that having to wear SPF 70 everyday could very well prevent skin cancer too. I don’t want to complain because I KNOW things could be so much worse for me. I feel terrible about even bringing it up because there are so many more people who struggling with illness too, I’m no more important than they are. I should just suck it up and play this card that was handed to me, but I’m tired. Sometimes I don’t want to deal with it, I don’t want that constant reminder that something is wrong with me, I just want to feel pretty again.
I know I’m not alone though, even though I feel that way at times. He is with me. Another Phil Wickham song, ‘safe’ is hitting close to home right now. Funny, because I’m going to see him tonight at church perform it, God is funny that way. Listen to the song and you’ll know why I’m clinging to it right now. Another little something that caught my eye in small group last week and I wrote it down:
For I bear on my body the scars that show I belong to Jesus. Galatians 6:17.
I will keep my head up, I’ll smile even when I don’t want to, and I’ll get up and participate in my life because I have no other choice. The alternative is even more depressing than my reality. I will try to focus on the amazing things I have in my life, like amazing friends who have supported me and held me up when I just wanted to sink down in a puddle of my own tears. I have an amazing family, a great job, loving dogs (silly, but they really do help me), and I still have the sun, even if I have to wear SPF 70. Anyways, just a glimpse into what I’m struggling with right now. Thanks for reading.
Jenny, You're right. There's always someone else who has it worse, and another who seemingly has an easier time in life. What happens in the future is scary for all of us. You face your specific and very real fears of ill health and being alone and some of us face old age with fear and trembling because, for us,it is at the door. We will make it through this life with the Lord's help, just as you write. He promised that in our weakness,through Him,we are strong. Let's also remember that there's a better day coming. Our early brothers and sisters encouraged one another with the hope of heaven and the life after this one. As hard as life is for you now, this isn't all that there is. Have hope for a new day, Jenny. It's coming. He promised.
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