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Sonya’s Fight Like A Girl Story (Lupus)

Sonya's Story (Lupus)Purple Colored Sunglasses

I walked with a pretty fast gait. I walked around others who couldn’t catch up to me. Rolled my eyes at those who were too slow. Cringed at the elderly who took too much time getting up the steps to the bus.

I cringed at ANYONE who took too much time to do anything!

My intention wasn’t to be rude. It’s just I had SOMEWHERE TO GO! I couldn’t wait for time – time had to catch up to ME.

I had to take my daughter to school, get ready for work, work for ten to twelve hours a day and with my job I was always on the move.

I had to get home and drive through crazy Chicago rush hour traffic, grocery shop, and make it home to cook dinner. Help my daughter with her homework and make sure I got in the bed with just enough sleep to do it all over again.

Slowing down? Not an option for me. The world had to match my speed. Not the other way around.

But times began to slowly change.

I was out of breath more often than I cared to admit. I started to get strange aches and pains here and there. I couldn’t move without taking a hot bath – which became a ritual every night.

My off-days turned into forty eight hour sleeping marathons. My wardrobe dwindled from flirty sundresses and skinny jeans to pajama tops and slipper socks.

I shrugged my shoulders and chalked it up to just getting older.

My fingers had begun to swell like sausages and my underwear didn’t fit anymore because I lost thirty pounds.

I shrugged my shoulders and put on my uniform.

Although it felt like I was run over by a dump truck in the morning and my left knee, right hand and eye began to swell for no reason, I shrugged my shoulders and headed off to my daughter’s swim meets.

My doctor became concerned and ran tests. My diagnosis of Systemic Lupus Erythematosus occurred March 3, 2011 and left me in a tailspin.

I was forced to put on my purple colored sunglasses.

The world became a different place.

I had to SLOW DOWN.

I take even more time out to talk with my daughter and spend as much time with her as possible. Being forced to take time off work, I’m home now and although it’s hitting me financially, I make up for it by being with her.

Even going to the grocery store has its challenges.

I used to whisk through the aisles, navigating effortlessly past those motor-powered shopping carts reserved for the disabled and elderly, grab what I needed and headed for the checkout counter.

My personal best time: 17 minutes.

Now I’ve been forced to rely on my friends and family members to help me lift heavy items while I lean on my cart for support. Walking for longer than fifteen minutes will cause pain that is unimaginable.

With my purple colored sunglasses, they force you to see who is really in your corner and who isn’t.

The smiling faces of so called friends are quickly diminished through the purple lenses. Their smiles turn to frowns because you realize that you were only good to them as long as you’re healthy. Now they just discard you and dismiss you as if you don’t exist.

My purple colored sunglasses allow me to see my true friends and family members that will always remain in my corner, whether I am hooked up to an IV in a hospital bed or playing Frisbee in the backyard without a care in the world.

I now smile at the elderly and disabled as they make their way through the world. Small achievements as they make their way up a flight of stairs, slowly but surely.

That’s what purple colored sunglasses will do for you. They may force you to slow down but they remind you that the world is still a beautiful place that you can still conquer at a slower pace.

Sonya
Indiana
3-25-11

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

20 comments

  1. Sonya,

    My heart goes out to you. I too used to be that person whisking through life at a frenetic pace. Chronic illness really makes you stop and take stock of things. And appreciate your time with your children so much more.

    The whole world seems to stop revolving when you find out you have an incurable illness. For me, that is bipolar disorder and fibromyalgia. It was also the day I found out my youngest son has autism.

    I’m sure you, like me, have good days where you are doing all right and bad days when you can barely make it out of bed. You learn how to enjoy the times when you are not hurting so much more because of the times that you hurt so bad it takes your breath away. It’s a life of contrasts.

    My heart goes out to you and I will keep you in my thoughts.

    Chelle

    • Wow….Thank you Chelle for you kind words. My heart goes out to you as well. You’re right, there are good days when I feel like I’m on top of the world and bad days when I begin to wonder if this is the beginning of my own demise.

      But I bounce right back and never take anything for granted. I cherish all the wonderful people that have stood by my side and I don’t judge the ones that have left my side.

      Stay strong love.

      Sonya

      • Sonya,

        I just read your story again and it really hit home AGAIN! I was in the grocery store this morning and I was behind an older gentleman in one of those wheelchair cart things putting through the aisles. I have so much more patience for people who are elderly and disabled now than I ever did when I was rushing through life. I smile at people I don’t know to try and brighten their day – especially people who are obviously disabled in some way. You never know if you might be the only person they get to talk to that day.

        The other thing you said that is so true is that having a chronic and debilitating illness really shows you who your friends are and it can become an extremely lonely existence. Most people don’t want to hang around when you’re always feeling bad. I am very lucky to have a husband who has stuck it out with me for 23 years despite all of the “sick” part of “in sickness and in health.” Other than that, I can count the number of people I would consider true friends I can count on on just one hand. But, the illnesses force me to see the beauty in the slower side of life, nature, my relationships with my children, and I have become able to say “I enjoyed that friendship for X years” instead of “why did this person leave?” It’s just a shift in perspective.

        I applaud you for your bravery and commend you for such a well written story!

        Chelle

        • I’m beaming from ear to ear Chelle. Thanks for rereading my story. I’m so glad that you can identify with it. It makes me feel like I’m not the only one in the world. Check out my tumblr where I blog about Lupus by clicking on my NAME.

          ((((((((((((((PAIN FREE HUGS TO YOU AND EVERYONE))))))))))))))))))))

  2. I am touched deeply by Chelle and Sonya’s story. More so, because one story is actually close to my heart (Sonya). I pray that you both have peaceful journeys in life like butterflies touch their wings to the sky. I love you Sonya!

    Meagen

    • Oh wow Meagen! I love you too! Thank you!!!!!!!!!!!!

      • Thank you Meagen. You have no idea how much those words touch me!

        And the butterfly is my special talisman. It represents the brave spirit of a little girl we knew who died last year at the age of three from acute myeloid leukemia, as well as my desire that my soul always be free even if my body and mind are not. It’s absolutely uncanny how often the butterfly shows up in my life (like what you said in your post) and I know there is a little angel watching over me.

        Chelle

  3. You’re an example of strength and fortitude. I don’t know if I could deal with the pain, irritation and lack of energy you deal with on a daily basis. I wish I could do more for you. You are my little warrior and I’m grateful to have you in my life. I love you Sonya.

  4. kelligrace dettman

    My mom had lupus and she died when i was 7 months old. I am now 21 and I wish I had gotten to know her. I have many pictures of her, some where the lupus is evident on her face. I know she was a loving person and I am blessed to have such a mother. I have found there are new options and treatments and that gives me hope for people who are afflicted. I wish you the best and god bless.

  5. My name is Sonya and I too have Lupus, your story put words to my feelings.Prayers for you!

  6. This story is unbelivable. I feel like someone was in my mind,reading my thoughts. This has been the longest,hardest 5 yrs of my life. i have lost so many friends that felt like because Im not super Melissa anymore. Its mind blowing that Im not alone. And as sick as it sounds its half soothing to know that others are going through the same…..

  7. Like looking in the mirror~ Thank you for sharing!

  8. Reading this gave me chills because we are walking in the same shoes.. It’s unfortunate that we connect in this way but it helps to know that we share the same struggles and understand all the trials that everday life brings us. I was diagnosed this September with SLE, connective tissue disease and undiagnosed Myositis and it’s been a physical and emotional rollercoaster for me because I’ve had to slow down so much and depend others to carry things for me and do things for me. It’s frustrating but I’m learning to listen to my body and just comply. Thank you for sharing your story.

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