My ALPHA journey…

“But you are a chosen people, a royal priesthood, a holy nation, God’s special possession, that you may declare the praises of him who called you out of darkness into his wonderful light.” (‭1 Peter‬ ‭2‬:‭9‬ ESV)

Last week, I had the amazing opportunity to spend a few days at the Lupus Foundation of America. I was one of three patient representatives of the Global Advisory Committee with the ALPHA project (Addressing Lupus Pillars for Health Advancement). The purpose of this project was to bring together physicians, researchers, pharmaceutical developers and Lupus patients from across the world (the US, the UK, Korea, and Germany) to discuss actionable solutions to the top leading barriers in the Lupus community today. I’m so excited about the work we were able to do in those two days, identifying barriers in three key areas: drug development, clinical care, and access to care. The experience itself was amazing to be a part of, no doubt. Especially because as a patient, I knew that my voice was 1) being asked for 2) heard and 3) valued. I appreciated the fact that everyone on the committee and the LFA staff genuinely wanted the opinions and thoughts from me and the other two Lupus patient representatives. Not only did they want us a part of the conversation but they wanted us a part of the solution. As a patient advocate, it feels great to know that the work that is being done is truly on behalf of those of us who are living with this chronic illness every day of our lives.

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I thank God every day for choosing me in this season to play my part in the Lupus community and I never want to take any of these opportunities for granted. Those two days were so exciting and productive that I almost – just for a second – forgot that I had a chronic illness lol However, as soon as I got home, I was instantly hit with overwhelming pain that reminded me, I DO have Lupus. Hello, reality. After spending two amazing days advocating and talking about Lupus, I’ve just spent the last three days on bed rest because of it lol. I know it’s not funny but it does seem a little ironic AND a drastic reminder of WHY I’ve fallen into this advocacy work in the first place. I am reminded that for every bad day I spend on bed rest or with fatigue or in pain, I will eventually come off bed rest and gain the strength and energy to continue this fight to thrive. I’ve adopted this perspective… A temporary setback is usually a setup for a comeback. So, for as long as I am able, I will continue to look Lupus in the face and say, “not today.” I will continue to trust in folks like the LFA and their initiatives to create opportunities for Lupus patients to live great lives and I will forever give of myself to advocate for us all.

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ALPHA GAC

Click here to read more about LFA’s ALPHA project and the Global Advisory Committee.

AND click here to see a little Facebook live interview I participated in after our committee meeting last week.

All my love, Syd

The Lame Man

Then Jesus said to him, “Get up! Pick up your mat and walk.” (John 5:8 NIV)

It was at the pools of Bethesda where 1 of 2 recorded healing miracles took place by Jesus in the book of John (*the second was at the Pool of Siloam where Jesus healed the blind man*).

The pools of Bethesda (Bethesda, also meaning “House of mercy”) is situated right next to the Church of St. Anne – a beautiful Roman Catholic church with incredible acoustics that would make you swoon. Also known as the home site of the Virgin Mary’s parents and where the Virgin Mary was born.

I have read that the pools of Bethesda were used for three purposes. 1) To collect water that met the daily needs of people living in Jerusalem. 2) To wash sacrificial animals of worshippers on their way to the temple grounds – where the people brought their animals for sacrifice through the Sheep Gate. 3) Where people with physical disabilities gathered around the pool, hoping to receive a miraculous cure when, it is believed, the angels stirred the waters. This – is where the lame man of 38 years laid on his mat, waiting for someone to help him in. This – is where he met Jesus and his story of healing was recorded. For me. For you. For us.Read More »

R E F L E C T – 2018

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah 29:11 NIV)

Second week into the New Year and I have been enjoying reading and hearing of other people’s reflections of their 2018 year. Marriages, babies, new businesses, #MoreLIFE… I enjoy living vicariously through others and it’s always a nice reminder that with their happiness means happiness is in the neighborhood! Because ya’ll, happiness wasn’t always the case for me in 2018. 2018 was a growing year where naturally, the changing conditions, stretching, and development was pretty painful but mostly just uncomfortable.

Five minutes into our last session of the year, my therapist (oh yea, I’m in counseling now – we’ll get into that another day) asked me to draw a picture in my head of what my future looked like. After a few seconds of desperately trying to force a picture into my mind, I gave up… “I can’t see it.” He told me to try again and I, very adamantly proclaimed that I. COULD. NOT. SEE. IT.Read More »

One year later… Ten things my Lupus diagnosis has taught me.

“…you know me inside and out, you know every bone in my body; you know exactly how I was made, bit by bit, how I was sculpted from nothing into something…” (Psalm 139:15 MSG)

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Exactly one year ago today, I was diagnosed with Lupus. Happy Anniversary! Yes, I have decided to celebrate it. Not because I believe this is a super exciting thing to celebrate – I mean come on, “I’d like to be diagnosed with a chronic illness.” – said no one ever. But I HAVE decided to celebrate the fact that one year later, I am still standing, much stronger than I’d anticipated, with a fire in my belly and determined to live, not just exist but to thrive. So, cheers to one year of thriving with Lupus! To commemorate one-year-down, I’d like to share a few things I’ve learned so far on this journey…Read More »

Pumpkin Patch & Family Traditions

“The greatest healing therapy is family and love.”

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We took the little humans of our family – my little sister and little cousins – to the pumpkin patch last weekend but I’ll admit, I probably enjoy the pumpkin patch as much as, if not more, than they do 🙊 I love everything about the experience – the maze, the hayrides, the photo ops (obviously), and picking out the perfect pumpkins that would come home with us.

But mostly what I love so much about it is that we’ve all intentionally carved out some time to spend with each other – as a family. Especially because life can get so busy and filled with day-to-day responsibilities. Going to the pumpkin patch every year is one of our family traditions I hold super close to my heart. I spent a lot of time this year just watching my family and enjoying their company. I guess as I’m getting older, and knowing that this life living with lupus can be difficult, maintaining family traditions means so much more to me now. Not just because it’s something we DO, but because making memories with the people I love, and who love me, is the thing that pushes me through the very hard days.

On the days when I am too tired or in too much pain to do anything, I can think back to watching my mother, sister, and cousin jump from haystack to haystack trying not to fall. When we fed the goats and pet the cows or when my cousin and uncle helped me find the perfect little baby pumpkin just because I love cute things. These are the memories that brings a smile to my face on the days I feel so defeated. Family traditions and quality time has this beautiful potential to bring incredible healing.

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What are some of your favorite family traditions?

Pumpkin

 

All my love,

Syd

I can feel the transition. And it kinda hurts!

“Spring passes and one remembers one’s innocence. Summer passes and one remembers one’s exuberance. Autumn passes and one remembers one’s reverence. Winter passes and one remembers one’s perseverance.” — Yoko Ono

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Almost exactly one year ago is when I started showing symptoms of lupus, when the seasons started to transition from Summer to Fall. I was spending A LOT of time in the sun and then thrown into cold, wet weather. I remember being in Miami on a girl’s trip for my good friend’s birthday and just feeling soooo exhausted the entire trip. I had no real way of explaining it other than just feeling tired and achy.

Miami2017

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Her trash. My treasure.

“My love, I love you with every fiber in my being.” – Anonymous sixteen-year-old

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I was gathering the trash in my house like I normally do on a Sunday night, getting it ready for trash day the next morning, when I accidently dropped the garbage basket and a series of wrinkled up post-it notes fell out. Amongst the pile was a note that read, “My love, I love you with every fiber in my being,” signed by my sixteen-year-old cousin. I’m almost certain she would choose to ignore me for the next several years if she knew I found it lol I almost instantly took a picture of it to text it to her, along with that snickering monkey emoji but then I thought against it, didn’t wanna embarrass the kid, you know. Nevertheless, it was the cutest message I’ve seen in a while and sent me down an almost endless stream of googly eyed thoughts… Who was it for? Does she have a boyfriend? What does he look like? OR… perhaps there’s no teenaged boy on the receiving end of her post-it thought. Perhaps she was writing notes to herself like I do (stop judging me lol). You know, like a little reminder to herself that she is loved.

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