Lupus Lately

One thing I haven’t touched on in a while: Lupus.

She’s been O.K., definitely been worse, but has also definitely been better. When I began this blog two summers ago, I had just received word from my rheumatologist that I was no longer in “remission*.” Since that time my blood tests have shown that my lupus is active, fortunately, I have remained relatively healthy. What people don’t understand is that lupus has such a broad impact on different people. For me, I take two pills a day of an anti-malarial called plaquenil. However, lupus is an auto-immune that can attack any organ in the body and the tissues of the body. It does this because the antibodies produced believe the internal organs are invaders that need to be kicked out- fight the good fight, lupus. Just stop fighting the wrong fight, you idiot!

Most recently I have been experiencing photosensitivity. This is typical during summer because it is a challenge to avoid the sun, especially in a beach town. The other day Jess and I were about to walk into yoga when she looked over at me with a concerned face “your skin!” She appeared so concerned that I ran into the bathroom to check what was wrong- oh, this old thing?! 

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This is my skin without makeup during an outbreak of the lupus “butterfly rash.” Whole face has been left out for protection of its owner. Those little red dots that look like pimples are part of the package, people- beauteous, I know. As a concerned with my appearance female, I try to cover it with makeup, but there is only so much that can be done.

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It is what it is. At times it’s an enormous frustration for me because who doesn’t want to be “normal.” News flash: it’s probably my fault that I have the facial rash in the first place. Scouts honor- I laid in the sun the other day. I’ve discussed this before, but sun is a trigger for lupus and can lead to flares. I’m supposed to wear sunscreen all of the time, even in winter, because of UV rays. For some people with lupus, even fluorescent lights can become a problem. I am completely aware that I’m not supposed to lay in the sun, but then why does it feel so delicious?! Request for whoever is operating the world, stop making bad things feel/taste/look so good, please?!

So yes, it angers me that I can’t do unhealthy things with my friends. What I come to every time I find myself hostile towards the world: it could be worse. It could be organ involvement, chemotherapy, premature death. So as horrible as a rash is, my skin is not the worst part of this disease. So I guess I will take what I can get. Life is turbulent and unpredictable- we create it, we can shape and alter it. That’s why I wear sunscreen and why I usually don’t lay in the sun- I protect my health. That’s why I take yoga, run, bike ride, and try to live an active life. I cannot escape lupus, but I can live the best life possible.

*remission for lupus: is not real. there is no cure. That’s me being bitter- In layman’s terms, it means you aren’t really showing symptoms of lupus.

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22 thoughts on “Lupus Lately

  1. Hello my beautiful friend Talia. Your blogs are always so beautiful to read. I feel for you as I watch my lovely sister go through similar struggles. Keep up all your hard work. Stay positive and continue to do all of the things that you love. Continue to write because I am sure your words of wisdom are helping others that are going through struggles as well. Love you to peices!

  2. I know first hand about Lupus. I have had it all my life but just diagnosed with it about 5 years ago. It has answered many of my questions regarding my health since I was a child! I look forward reading your blogs. It is nice to know that there are many of us out there with lupus and know what life is like to struggle with the disease like this.

  3. I’m so sorry you’re out of remission. I can’t imagine how much that would suck to scoot along feeling well and then… not. How unfair. From one lupus chick to another: I wish I could wave my wand and make it all better for you. Sending you good vibes.

    On a completely unrelated point: your lashes are AMAZING. I know. Not important. But…dang girl. Amazing.

    • The magic wand to eradicate disease?! Sign me up! hahaha Thank you for your good vibes 🙂 and thank you for the compliment on my lashes. It’s part genetics and part excellent mascara (Benefit’s “They’re Real”)

      • Thanks for the tip, I’ve been meaning to try that! I love Benefit. Ok I know this isn’t a beauty blog…but a girl’s gotta get her fab on where she can. Much love!!

  4. Lupus My Invisible Companion
    My name is Chelsea Stark. And I recently was diagnosed with lupus. I just started a blog titled lupus my invisible companion and I’m looking for people to share some life stories. And some vitamins for exercises or prescriptions that help them. The goal of this blog is to help other people with lupus and maybe educate those who do not have it. Here is the link. https://lupusmyinvisiblecompanion.wordpress.com

    • Hi Chelsea, I hope you find the blog helpful. When I was first diagnosed social media did not exist like it does today. Having the ability to share stories and make connections with people is so helpful (at least for me!) Hope you are doing well!

    • Hi Chelsea! It’s brave of you to reach out so soon after being diagnosed. I know what a challenging journey it can feel like at the beginning, but it’s not all bad, I promise. After a while, your life will start to feel like..well, your life again. Channeling your energy like this is a wonderful thing. Also remember to be kind to yourself, to cut yourself slack, and you’ll be good to go. xoxo Gabrielle

      • Excellent advice. As I said before, it took 10 years to feel comfortable enough to share. What I’ve found is that it’s not only therapeutic, but it allows me to create a community with people I otherwise would not have met!

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