Today is for Lupus

The rain forces my chin towards my chest as I tiptoe across the parking lot towards my car.  Puddles lie camouflaged on the drenched concrete.  I splash around like an awkard duckling, an unwilling playmate to the onslaught of rain.  I’m slightly annoyed, but not enough to run.  My muscles tense as the colour drains from of my fingertips and toes.

My head hurts.  My thoughts hurt.  I need a nap.

Today has “Lupus” written all over it.  It’s “World Lupus Day.”  It’s also “Lupus Awareness Month” in the U.S.  The slightly irritated part of me thinks that I, along with everyone else in the world, could care less.  The usually optimistic part of me scolds me for being such a grump.

So, what does a Lupie girl do on a day like today?  How do I recognize and acknowledge the millions of people who live with me on this mad, crazy, Lupie world?  I did it by doing the best and sometimes, the hardest thing for any Lupie to do:  I listened to my body.

I took a nap.

http://www.worldlupusday.org/

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5 thoughts on “Today is for Lupus

  1. Freshly diagnosed, i fear the worst. The flares … Is remission on the horizon. Its hard to accept this is mine. Some days i feel defeated. Am i the only 1 who doesnt have a positive attitude? How can i accept this? Why should i own it. Frustrating! Why me?

    • Haley, I can’t tell you how many times I’ve felt defeated, frustrated, angry and scared. You’re right, it’s a shitty deal and it feels like complete and utter bullshit that it’s happening to you. When I was first diagnosed I was a train wreck and even now, almost 9 years later, I still have really, really crappy days where I just want to give up. I’ve learned that it’s okay to have those feelings, but the key is not to let them rule your universe because when you do, that’s when the flare ups happen. You don’t have to own Lupus, but we all have to accept that it’s there. You can’t do anything about the future, all you can do is focus on what’s happening now. Own the “now,” not the disease. I am the first to admit that I am terrified that I will flare up again, that the crippling pain will come back, that my brain will get inflamed and I’ll lose myself in psychosis again. I wonder everyday how much more time I have in this “pain-free” zone. Try not to let the negative thoughts take over. It’s Lupus’ secret weapon. Don’t underestimate the connection between emotional and physical, especially with our disease. There isn’t much that we can control in our situation except the food we eat, the sleep we get and the thoughts we think. Those are our weapons. Keep fighting, my dear. Please know you aren’t alone and never doubt that there are millions of people around the world who are thinking and feeling the same things as you (positive and negative). You are always welcome to comment on my blog and ask question or share parts of your story. I’m so happy you stumbled upon my blog. It’s so nice to get a comment from a new Lupie sister.

      Be Well,
      Elena

  2. Elena!

    You came as if God sent you himself. i really needed to know that im not alone. i always find myself wanting to communicate with some1, but never get any responses,or the response i get is not enough, im never satisfied. yours is the 1st real, satisfactory response i’ve received in a year.
    Let me give you some background about me : Haley, 28yrs old, Jhb South africa, and i have 2 kids.
    I was initially diagnosed with rheumatoid arthritis last year may (exactly a year ago) after many tests, and the flare ups, doctors mis-diagnosing symptoms.. they finally realized what it was the great imitator itself : SLE. I was finally diagnosed with SLE on my sons bday – Oct 14 2009. saddest day of my life. i felt as if my worl was over. my mom and i cried that night. not because we were afraid of me dying, but because we were afraid of the unknown. i had heard of lupus many years ago, but i had no idea what it was all about.
    When the rheumatoid was picked up, i found out that i was pregnant as well. (My daughter was born on the 09.04.2010, healthy as ever, thank god!) And because i was pregnant i couldnt go onto any treatment. my rheumatologist was livid,how was he supposed to help me, when i didnt want help? i decided not to take any meds that would affect my unborn baby. He agreed, and to be safe, for me, he prescribed 50mg plasmaquin…
    Throughout my pregnancy i was “good”.. no morning stiffness, my anaemia was relaxed, i slept regularly, i stopped eating red meat, and ate more of a protein rich diet. It all seemed to help.
    After baby was born i finally made my rheumatologist happy and am on treatment, that day in his rooms, he injected 7 of my fingers, and 2 knuckles, my knee and my shoulder with cortosone, i creid bitterly, not because it hurt, but because it was NOW real, and i was treating this “thing”. its been a month now. Daily doses of folic acid, plasmaquin and coxflam… and then the dreaded friday evening when i take the 8pills of methotrexate, i hate fridays. i feel weak, my digetsive system is confused, my skin tingles, i feel like a “loopy lupie”… my brain doesnt function properly..
    Are the symptoms different in every lupus sufferer?
    Im looking to change my diet… any suggestions?

    Thank you once again for your prompt response. this is what i need. im not trying to hold onto to another person to give me strength, but im looking for some1 to instill some positivity in me.

    Hope to hear from you soon Elena,
    H*

    • Haley, I am glad that I was able to show you that you aren’t alone because you aren’t! Far from it! You and I have a lot in common, actually. I was also misdiagnosed as having rheumatoid arthritis and presently, I am also on methyltrexate and folic acid (among other things). We are also the same age!

      Yes, each lupus sufferer has a different combination of symptoms, which is why it is so hard for doctors to treat and research. Lupus is the “great imitator,” so all of our symptoms could also be several diseases, which of course, leads to misdiagnosis. Even though every “lupie” has a different combo, there are always certain similarities among all of us.

      Before my last flare-up, I had cut out red meat entirely, which I felt helped with the inflammation. I had to start eating it again because of all the weight I lost. I haven’t cut it out entirely yet, but I’m pretty close. There are a lot of theories on what lupies should eat. Some people say the best results are with a vegan diet, but that is too extreme for me. I try really hard to eat more veggies (especially dark and leafy) and fruit than meats, but I don’t think my body is ready to cut meat out of the equation completely. Smoothies are really good, especially when your stomach isn’t feeling too well. It’s so easy to throw in some veggies or flax in there for extra nutrients. If you can afford to eat organic, do it. Try to drink LOTS of water, especially because of all the meds we are on. Some say that certain foods may induce flares for some people. For example, some say that the veggies in the “nightshade family” (tomato, potato, eggplant, peppers, etc.) can cause symptoms in some lupus patients. You can try experimenting with taking some foods out of your diet for a period of time and then slowly reintroducing it to see if it makes a difference. Take care of your body by caring about what you put into it, but don’t forget to enjoy yourself too. It’s okay to allow yourself a treat now and again!! Oh, and make sure you keep a symptom journal so that you can start figuring out what your triggers are, whether they be different types of food, stress, weather or anything else! It’s your tool to help you live and feel better.

      Are you on facebook? I recommend checking out the “Hot Chicks with Lupus” facebook group. The name is a little silly, but there are discussion boards about everything and anything you want to know. You can even post questions yourself. I have several times. There are people on there from all over the world who just want to chat with other people with Lupus. When I found this forum to discuss my fears and my concerns, it was the first time that I realized I wasn’t alone. One time, when I was expressing my frustrations with my constant fatigue, someone said to me that I should take care of myself the way I would a small child. I will offer that advice to you as well, that during this lifelong journey you should be as loving and tender with yourself as you are with your two children.

      Stay strong. :)

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