Coping with lupus, depression and negative body image.

Yesterday I went to my rheumatologist (a doctor who deals with lupus, rheumatoid arthritis, and other autoimmune diseases). I see her either monthly or every other month. These days, I try to visit her with an open mind, knowing yeah, she won't taper my prednisone.

And when I saw her, her tone of voice sounded concerned. She didn't understand why the protein in my kidney kept fluctuating. She said that all my labs looked great and that that was the only thing that stopped me from tapering prednisone. Of course, I expressed my concerns and frustrations. I kept saying, "I don't understand..." and we went back and forth a bit, and she decided to taper me down to 9 mg (I was taking 10 mg since December). Yeah 9 mg is not much but it's something. She said that because I've been on prednisone for a long time (since October 2013), I would have to taper in 1 mg increments from the 10 mg. Last time I took it (December 2011–November 1, 2012), I tapered from 10 mg in 2.5 mg increments. Unfortunately, the protein wanted to come back to my kidney in Summer 2013.

My mom and Cecilio are rejoicing in my health. And I am too. But this morning I got myself into a wave of self pity I couldn't get out of. Every time I meet with my doctor, I get depressed, wondering,"What is the point of eating right and exercising if I'm not going to lose weight?!" I KNOW there are so many other benefits to it. Like decreasing a flare, avoiding more health complications as you grow older, etc. but I and many other women would be lying if we said we weren't trying to look good. Especially with my wedding coming up in March 2017. I've been into barre and yoga. My biggest fear is that I won't be off of prednisone by next year when I start shopping for wedding dresses, and if I am off of it, my kidney will want to act up again, therefore having to go back on it. I know Cecilio loves me the way I am, and at my heaviest weight, he still proposed to me. And he says I inspire him to exercise and eat healthier too because I've had success with that before.

But I want to look and feel good on that day, especially in wedding pictures. It doesn't help that there is so much pressure to lose weight on your big day: to me it sends the message that if you're not over a size 2, you're not worthy of love. Bullshit!

Anyway, I've always struggled with my body and looks since I was little. I grew up in Daly City, a suburb right next to San Francisco, where the majority of the population is Filipino like me. But most Filipinos are tiny, and I was taller and bigger boned. So you can imagine the horror of 5th grade when we weighed ourselves for PE and I weighed at 115 pounds while almost everyone else was still in the double-digits. I was 5'1", which is pretty tall for a 10 year old, especially a Filipino one. I only grew to be 5'4" though. And throughout my life I've fluctuated from 115 (when I was really ill with bad lupus flareups) to 155.

I've suffered with bullying and low self-esteem when I moved to Sacramento from the Bay Area in 7th grade. I'm still seething from the guys who would flirt with me in 8th grade but in a mocking way, and making sexual rumors about me being pregnant or giving one of them oral sex. Oh, my sister was so pissed off she came to the school one time and threatened them.

I was able to make more friends and boyfriends in high school, but high school had a lot of turmoil. I was still pretty ostracized for the way I looked and talked. My ex took advantage of my vulnerability at the time, and would talk to me in really sexual ways on AIM but refused to acknowledge me in person or go back out with me "because our group of friends hated me now, so he couldn't be seen talking to me". I know I'm not perfect, a lot of this drama was my wrongdoing too and if I could go back, I wouldn't have started a lot of things.

Senior year, I had carrots thrown at me in our business finance class, and one of them said "I wasn't worth shit". I tried not to cry, but my teacher saw and confronted that guy. Bless her heart, I became her TA during the last quarter because of it, and she was so good to me. I still have the teddy bear she gave me the end of senior year. I did really well that year (my best year academically and activity-wise)

As far as my weight? I was at my heaviest between sophomore and junior year (157 pounds) but I managed to lose 40 pounds by eating a lot healthier, loving vegetables, and using our treadmill. I did the same thing when I got off of prednisone in 2012, but that was because I was only on it for 11 months. Now? It's almost been 2 years, and I don't know if I will be able to do so.

I apologize for the long ramble about my past. I know I shouldn't get so caught up in it, but between that, the loss of my dad and the health issues I have right now made me in this mental state right now. But I want to overcome things. It is easier to wallow in self pity and let your inner demons destroy you. Right now I am going back into journaling and praying.

Have you struggled with bullying, depression, low self-esteem, chronic illness, etc? How do you not let it get to you so much? How do you force yourself to do the things you love, or the mundane even when you don't feel like it? I would really like to hear your input and advice so I can apply these things to my own life.

This verse gives me comfort, and I hope it does for you too, Christian or not (not trying to evangelize because that's totally not my thing):

Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. (2 Corinthians 4:16)

2 comments :

  1. Girl!!! I wish I could give you a really big hug but I am through lots of prayer I promise you this. I run in circles through my head too and today I was reading a Bible Plan about Jesus leaving peace with us when He left this earth. Then we have Satan messing with our minds trying to steal that, but he can't obviously because you have something more powerful and you know to turn to that scripture! I feel a constant pressure to keep up with my appearance too but my body is different and our battles with lupus are different. I can only say do what you are able to and ask God to guide you. It will all line up, the main thing is keeping you healthy and happy (physically, spiritually, mentally). You put HIM first and it will fall into place, but we know there will still be moments we will get rattled and that's okay. Shake it off and keep going!

    John 14:27 "Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid."

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    1. Thank you so much for the encouragement! Yes I am taking it one day at a time though it's really hard. I was also encouraged today by a young lady (about my age) posting a video of the weight gain she had to go through with medications...she has way more diseases than I do but still encourages people with her videos. Check out her Facebook page here: https://www.facebook.com/FindingStrengthThroughPain?fref=ts

      I know we spoonies are very strong for fighting back despite the devil and our disease knocking us down. I know we can and will triumph.

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