Chronically Ill, Partying and Hanging on to Normal

Chronically Ill, Partying and Hanging on to Normal

It’s 9:30 p.m. on a Saturday night and I’m attempting to draw a perfect wing liner on my top eyelid, with my left-hand – even though I was born right-handed. I don’t use my right hand as much because, due to tight arms, it doesn’t reach my face. So, I’ve taught myself to be ambidextrous!

My phone beeps with a text: “What time are we meeting?” I reply with a realistic time frame, because it can take me up to 10 minutes just to put on an outfit by myself. My hair is usually blow dried straight, so I just have to run a brush through it a few times.

After I finish my makeup, I look for an outfit. I have to check the weather, because if it’s less than 75 degrees out, I have to wear pants. A person with scleroderma freezes in any type of cool weather because of Raynaud’s phenomenon. Attempting to shimmy into pants can turn into a full-blown cardio workout  because my fingers don’t stretch. If the weather’s warm I slide into a dress because it’s the easiest to put on, and I look cute!

Next accessory to put on are earrings. I’ve recently had a lot of difficultly trying to reach my ears, so I just throw a pair in my purse, and ask my friends to put them on when we meet. Lastly, I slide on flat shoes, although in the back of my mind I wish I was wearing heels. Heels are an ancient memory that my tight legs gave up walking in about four years ago.

I grab my phone, turn on the Bluetooth, and unlock my front door with a special app, so I don’t have to struggle with the lock. I get into the car and use a mini-lint roller to press the “engine on” button. I put on an offensive hip-hop playlist, crank up the volume, grab my extra-padding steering wheel, and ride into whatever the night has to offer.

One of the last times I wore high heels

Sometimes I feel guilt wash over me as I sit with my friends and sip red wine. Or, sometimes I’ll drink vodka with club soda, depending on my mood. I’m a 29-year-old chronically ill person who still is able to enjoy the night life. Imagine that! No kids or boyfriend, so it makes it that much more appealing.

I’ve been going out since my late teens, and this is one thing I feel relates to the old me. I think it’s the conversations and laughs we have, as we sit by the bar that make me feel like a normal person for a few hours. I’ve always been the party-starter, the one who gets us into clubs for free, or knows someone so we can skip the line. I lead the way through large crowds. I know amazing bartenders who give us free drinks.

The reason I like going out is that it challenges me to feel comfortable with myself. So many “normal” people in a large area at once, all attempting to look their best and have a good time. I am the same. Time to time I get anxiety because I feel like every person I walk by is staring at my skin, but I constantly comfort myself with empowering thoughts. Once the music gets pumping I’m totally unaware of any worries, as I dance my problems away.

I shake it to all kinds of music: Spanish, reggae, rap, and I even try to jump a little when the techno comes on. I have to sit down throughout the night because my legs get very tired. My friends usually accompany me to the bathroom so they can help me with the doors. My friends also are my token drink holders, because the cup makes my hand cold and hurts to hold. We laugh and dance until the late hours of the night. The next day I’m pretty tired, but I never regret going out a few times a month.

Still the same spirit inside, despite my differences outside

For now, I’m not taking anything that has adverse side effects when mixed with alcohol. I know many medications, symptoms, and alcohol don’t mix. I’m not trying to encourage drinking or partying, I just want you to do what makes you feel normal. Even if it’s just for one hour.

We have to stay connected to the few things that remind us of our healthier self. Find something that helps relieve stress and experience positive emotions. I know it seems impossible at times with the many complications of scleroderma, but impossible translates to I’m possible.

Cheers to all my amazing warriors out there.

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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.

3 comments

  1. Connie says:

    Wow! I think I’m you in my earlier years. You are an incredible, vibrant woman and I’m so sad you’re dealing with this- but also I’m encouraged because you are doing what you love- hanging with friends and having a social life – these are so huge when battling this disease. You go girl!

  2. Sandy Austin says:

    Hi Hon,
    keep your chin up and rocking out!!! I was the party animal of my group,the skater,new all the bartenders etc. I am much older and did not have to deal with scleroderma until my 40’s. My party days still exist, one drink minimum due to meds,which make for a cheap drunk…lol. Scleroderma takes so much from us all,and we have to adjust,making modifications to everything we do. Having great friends and family that support and understand are crucial.
    There is so much research going on,that I hope we all see something life changing come from it,so we can all get back on track!! Take care wild one

  3. Chester says:

    Its funny to think about it because Ive known you personally for about 7-8 years now. I believe we actually met at a club, officially! We have been close friends ever since. Since your disease has progressed on you never once had you let dictate or hamper your lifestyle. Bad days come and go but your drive to keep on going is an inspiration. Not just to your scleroderma community but to everyone who comes in contact with you. You’re a warrior yourself and you will always be the normal girl shaking it to whatever kind of music comes on at a club! Forever grateful to call you my best friend!

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