May is Lupus Awareness Month

10 May

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Those of you that follow me on Twitter, may have seen this freak out yesterday. If you don’t, well, there’s my freak out. I have what’s called Discoid Lupus. Most of the time I’m pretty calm about it. I just do what I have to do. I stay inside, wear long sleeves, take my medication… you know, most of the things I’m supposed to be doing. I really don’t like wearing sunscreen because of the way it smells. But today, I reluctantly put it on. Reluctantly smeared it on my face and arms until I stank of it. And as I sit here writing this, I feel kind of defeated.

How does this relate to knitting? Well, if you read my post about Why I Knit you’d know that I knit because it’s something for me to do. I can knit inside and not feel like I’m missing out on much. But I worry now that with this new lesion on my hand that it will impact my knitting ability. Lesions tend to be painful and itchy. Most of the time, discoid lupus sufferers take medication or use topical steroid ointments. And with this lesion on my hands, I’m worried that putting ointment on it and a band aid will be messy and make me clumsy.

I wouldn’t be surprised if some of you were sitting there, reading this, and thinking “What’s the big deal? It’s on her skin. It’s not like she’s in pain. It could be worse.” You’re right, it could be worse. I could have Systemic Lupus which shuts down your organs. My discoid lupus could be much worse than it is. But it’s hard. It’s hard not knowing what’s going to come next. It’s hard not knowing whether I will be unfortunate enough to develop Systemic Lupus or not. It’s hard not being able to enjoy the San Diego weather or knit outside.

I’ve only been aware that I have this disease for two years. My boyfriend thinks by now I should have come to terms with it. He says I won’t lose my hair and that things will be fine. And that makes me angry. If the lupus were staying the same, it’d be a lot easier to come to terms with it. It’d be a lot easier for me to think that things weren’t going to get worse for my skin or my immune system. But he doesn’t know what’s going to happen! He doesn’t know whether I’ll get lesions on my scalp or not. He can’t tell the future! So when he says things like that to me, it makes me angry.

He doesn’t know whether one day I’ll get bad enough that I can’t knit anymore because my hands are too itchy or too bandaged to do anything. And that makes me angry. And sad. And a little bitter.

I’ll admit, within seconds of me posting those tweets, three of my lovely Twitter friends immediately messaged me/emailed me/texted me to make sure I was ok. To try and cheer me up and calm me down. And they are absolutely wonderful. They said exactly what I needed to hear. They didn’t tell me that there was no reason to freak out, didn’t tell me I needed to come to terms with what is going on, didn’t tell me that nothing was going to happen. And they let me cry and be sad and then they attempted to cheer me up. Without those three wonderful women, yesterday probably would have been ten times worse.

Any disease can be crippling in one way or another. And I urge you, if you have a friend who is sick but may not look sick, give them a hug. They have it a lot harder than you may know.

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5 Responses to “May is Lupus Awareness Month”

  1. Erron May 10, 2012 at 9:36 am #

    I have written many posts about various things in my life to the effect of if you don’t know, you don’t know. Simple platitudes are as frustrating as they come, especially from people who don’t get it, but (for me!) especially from the people who are supposed to be my support system. Most men (excuse the generalization) feel like they have to fix things, R can’t fix the fact that you have Lupus so the next best thing is to reassure you that the thing you hope doesn’t happen, your hair falling out, won’t. Of course he can’t say with certainty, and that is frustrating, and it feels like empty reassurance. On the subject of you don’t have it as bad as others, of course you don’t, I don’t, but that doesn’t mean that your hardship isn’t hard, that it is not worth grief or anxiety of what the future will bring, especially now that you’ve had a break out (is that the right word?). You should allow yourself to feel the way you feel, suppressing emotions to come back later can be more difficult in the long run. Just don’t get stuck, is what I always tell myself. I can understand the fear of losing your ability to knit – It is my therapy, my solace and my point of pride too, losing it would be crushing. Holding you up high today, hoping you heal swiftly, and thinking of you hoping your fears and anxiety are a little less today, and if not today then tomorrow. xoxo

  2. sandiblanc May 10, 2012 at 9:38 am #

    Hey, its me Sandi (The Blue Ewe from Twitter) and I would really like to thank you for this. Recently I was diagnosed with Autoimmune Hepatitis and developed an allergy one of the meds that I would have to be on for about a year. This allergy led one of my doctors to question Systemic Lupus and so I had to go through all the tests. I am glad to say that I don’t have lupus. As a former nurse, I know how bad it can be mentally. I admire your courage in talking and writing about this dreadful disease. Thank you for enlightening me further

  3. Jillian May 10, 2012 at 12:23 pm #

    My darling Miss V,

    I’ve been remiss in my communications with you lately, and you’ve been so wonderfully supporting of me through my difficult times. I’m sorry for that. This post was brave, and inspiring, and beautiful, just like you. I always have felt that it’s dangerous to compare who is going through a worse time, or who has it hardest. We can’t know how something is affecting someone, inside or out. I think R knows that no matter what happens with your condition, that you are a strong, independent woman who will rise to meet it and make the best out of it that you possibly can, even if your best doesn’t seem like a lot to someone else. But I know you, and I know that your best is amazing. I’m thinking of you, friend. I’m thinking of all the times you listened to me cry (over gchat, of course, so, read me cry is more accurate), and I know that you are the type of woman that so many people love, and I hate so much that you are dealing with this, and at such a young age. You’re in my heart. I love you, Britt. ❤

  4. idiosyncratic eye May 10, 2012 at 3:54 pm #

    It’s the ups and downs that are the biggest challenge in a long term illness for sure and facing another new setback can be frustrating, daunting even terrifying. It’s easy (relatively) to adjust to the idea of the illness but when we face the stark reminders of what that illness is taking away from or might take away further, that hurts, sucks and stinks. I hope you’re able to pursue your knitting, find new ways of doing things if needs be! (Maybe light cotton gloves will protect both your skin, any dressing and your knitting all at the same time?) 🙂

  5. weekend knitter May 12, 2012 at 4:42 am #

    I’m so sorry you are going through this. And in your youth, no less. But I’m also glad that you find ways to enjoy your life in spite of it through knitting and reaching out to others. I really do believe in that tendency being key to anyone overcoming whatever their personal circumstances are. I can’t begin to imagine what it would be like to knit with pain from lesions on my hands. But I hope you are able to continue to do what you love in spite of the things that threaten to make your life miserable. It’s just a huge inspiration to see someone fight through hard times. It’s a winner’s attitude.

    Don’t go too hard on the boyfriend. He loves you is all. 🙂

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