New Year, New US

What a year it’s been for The Lupus Loop! In this community, we’ve created a safe place where we can all share our experiences- the good and the bad- and come together in support. I’m very fortunate to everyone who has supported, viewed, shared, commented, talked about and contacted me through this blog and on Facebook. I love hearing from all of you and becoming friends!

This year, I’ve had the wonderful opportunity to speak with many about Lupus. Their battles, encouragements, inspirations, mottos, circumstances and love has taught me so much more to the disease (as I hope it does by my continued sharing of these extraordinary beings who offer their stories). Expect great stories this year!

This month, I want to focus on two individuals who I’ve had the pleasure of speaking with! Strength is born in us we just have to find it. Sometimes it’s on the surface so it is easy to access but other times it’s more difficult. We have to be able to allow ourselves the ability to be angry with our situations.

Christine is a mom who wasn’t diagnosed with Lupus until after her baby girl was born. However, almost immediately after birth, Lupus was in full swing when her joints wouldn’t budge on Thanksgiving. After being diagnosed with Lupus, Christine made the courageous decision to stop breast-feeding and focus on her health too.

What’s so interesting about her story is she spoke to me about the “stages of grief” and accepting a new normal. We’ve been there, right? I know I still struggle with not being able to do EVERYTHING I want because my body tells me no. She has no trouble allowing herself to just be in acceptance (although she admits to bartering between the stages…) *If you don’t know the stages, see below the interview.

Lupus Loop: What keeps you inspired?

Christine: My family (friends included in my family). My family has held me through my diagnosis, whether it’s taking me to doctor appointments, watching the baby, etc. I’m so grateful I have them. I also am grateful for my yoga practice. Yoga is not so much about what I have accomplished physically (although my strength has significantly increased) but how I have grown as a more spiritual person. When I am hurting, feeling down and or sad, a good yoga practice is what I need to kick start my attitude, and outlook on life. It made me live more in the present, which is the only way to live. Yoga can be done anywhere, on the floor next to your bed for example. Yoga books can be rented from local libraries; meditation can be downloaded on podcasts from your phone. I just needed to take the time for ‘me’. (Eckhart Tolle, a spiritual teacher and author is a great place to start)

Lupus Loop: If you had any advice for someone just diagnosed, what would it be?

Christine: Keep your head up. Do your research. Doctor shop, find a doctor who listens to you, can communicate with easily, and that you feel good with (if eligible, don’t try to rack up bills because that could be a stressor, but your health is ultimately more important than money). Find time for you, and the people that matter most in your life. And try at times when it may be nearly impossible, stay positive! Sending all my fellow lupies my love and shining light!!! We’re in this together. ❤ 

***

Yana was diagnosed at 15 Being very active as a track runner and ballet dancer as a sophomore, she took notice when her fingers, knees and ankles began to swell, when the butterfly rash appeared and when her body would break out. After a week in the hospital, she was diagnosed with Lupus Nephritis. By the time she was in her junior year of college, Lupus was attacking her kidneys and she was placed on chemotherapy and both kinds of dialysis. Though she kept her sickness hidden for a little, a kidney transplant was needed. Now, 15 years later, Lupus won some battles, but she is winning the war! She’s finished college, had a baby, received her master’s degree and has continued to work!

Lupus Loop: What keeps you inspired?

Yana: I am inspired every day by what I’ve been through health-wise. I know what it means to be sick so I appreciate what it means to be healthy even more. I try to make the best out of life because I’ve been so close to loosing it. My daughter also keeps me inspired; she’s a miracle baby. I’m also inspired by God, because know I would not be here on this planet if it were not for Him. Fashion keeps me inspired also, I started a blog last year, which has turned into a wonderful outlet for me.

Lupus Loop: If you had any advice for someone just diagnosed, what would it be?

 Yana: I have faced a lot of challenges; Lupus had me unable to walk at one time, I’ve had my hair fall out on more than one occasion, I’ve been on chemotherapy and 2 different types of kidney dialysis (hemo and peritoneal), all at a young age. I feel that I am a testament to Buddha’s quote: “The mind is everything. What you think you become.” I believe that what you focus on is what you feed, and that is what grows. I never chose to feed the disease or my circumstances; I continued to focus on my friends, family, fun and fashion at all times. Even when I was at the lowest point of my sickness, I made sure I stayed fly and smiled. I didn’t want my life to change due to the rude interruption of an uninvited disease. My advice is to keep your mind as healthy as possible. Focus on the good and good will come, even when it seems your body is not in agreement – it will catch up. Let your mind guide you and not your body. Don’t believe in Lupus. Believe in a good life filled with family and friends, God, and a positive future. Take your medicine, and live a healthy lifestyle. Don’t let go of your dreams and always find time to do what you love!

Thank you so much to Christine and Yana for sharing your stories and making your voices heard!

I just want to share some exciting news on my part!! I have made aware my enthusiasm for fitness numerous times, I go pretty frequently to the gym (this works for my body). For the past few months, I’ve been spinning at SoulCycle and they just wrote an article about me! Check out it out below! YAY!

https://www.soul-cycle.com/community/soul-story-alex-paradysz/913/

XO

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One thought on “New Year, New US

  1. Sharolyn Haulc-Robinson says:

    My 19 year old daughter had finally wanted to venture out to college away from home, but one day I received a phone call that my daughter was in ER, diagnosed with skin lupus, I brought her home and took her to a specialist where she told us she caught it just in time, treatable, now she is off of the prednisone, but my daughter is now scared about her future and life, of which has lessen her independence and now because of this disease that has taken hostage of my daughter my fight to continue to take care of her no matter what has become more stressful in me and my husband’s life…our grown daughter can’t almost do anything without me so I’m more determined to fight for a cure so she can become independent once again. ….concerned mother

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