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.

***

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.

***

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

Nothing Is Wasted

 

And we know that all things work together for good to those who love God, to those who are the called according to His purpose. (Rom. 8:28 NKJV)

Happy New Year! (Can I still say that? Ha!) What has been your favorite – or most memorable – experience from the holiday season so far? 

The last few weeks I’ve been on holiday from work and made it a point to enjoy every little bit of my break with family and friends. They are my greatest treasures! From having an early Christmas dinner with my sister-friends to ice skating with little cousins to taking my little sister to the National Museum of African American History and Culture in Washington, DC… Ginger bread houses, Christmas Eve sleep overs at my parent’s house, then ending 2019 hosting a New Year’s Day brunch at my house – whew it has been one busy but satisfying holiday season and my heart is so full!

***

2019 was good to me. 2019 was hard for me. Most importantly, 2019 was everything I needed it to be. I have truly learned the importance of taking the good with the bad. God writes a beautiful story. He writes the beginning, the middle, and the end. He works everything together – custom making and orchestrating everything for good.

***Read More »

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 »