“…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)
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…
So here we go, TEN things this first year of thriving with lupus has taught me:
I have learned to:
Reject the “Fear of missing out” (#FOMO) and give myself permission to say no to things I may not be able to do.
Rest. Then rest some more!
Find freedom in being honest with myself first, and then with others.
Dance. A LOT! Even when there’s no music.
Forgive my body when I think it’s failing me but trust that it is also doing its very best.
Be thankful for the good days and celebrate them as often as I want, HOWEVER I want.
Be grateful for other’s advice and experiences but be relentless in finding and focusing on what works for me.
Find an HONEST doctor who knows their stuff and stick with them!
I really appreciate how my doctors walked me through the process of properly diagnosing me. There were a lot of tests involved but both my primary care physician and rheumatologist were honest and up front with me from the very beginning. I knew something was wrong, but I didn’t know exactly what. I’m a planner, a project manager by day, so planning out everything is just what I do and I can’t help it lol. I know how I operate in life – tell it to me straight so I can plan out how to deal with it – and it was very important to me that I approached my health in the same way. Which meant, it was very important to me that my doctors would understand and respect that. Thankfully, they do. And so, after some tests my primary care sat me down and informed me that, “Yes, you have an auto-immune disease, now let’s figure out which one.” She was pretty certain that it was either fibromyalgia, rheumatoid arthritis, or lupus. So, we took some more tests and she basically told me to go make peace with that and we’d figure out the rest when the tests came back. And that meant a lot to me lol. In a way, I was able to prepare myself ahead of time for either this, that, or a mixture. Once diagnosed, I had a billion questions and they were very good with taking the time to answer each one and explain what each test and results meant. To some, this may have been overkill, but for me, I needed it. I guess it was my way of feeling like I had a bit of control. Knowing and understanding what was going on with my body helped me to feel empowered to make the necessary steps towards living a healthy and active life.
Find your people. Love your people. Appreciate your people.
Not long before I was actually diagnosed, I went through a period of time where friendships shifted and started to fade. People who I thought I would grow old with started to exit my life but let me be VERY clear… there are some friendships that end because of painful falling outs but these were not the case. This was simply – I believe – God shifting and realigning priorities and purposes which I now know, was necessary. Some people are your people for a season. And once that season changes, well… you know the rest. In that shifting, although admittedly difficult to work through at the time, I have been able to appreciate much more those friendships and relationships that are still here, have never wavered, and have been a proven constant that has strengthened me. They have been the ones on the phone with me in the middle of the night when I am in too much pain to sleep. They have been the ones to come to my house and just sit with me and listen to me talk about my fears and pain. They have been the ones who have rearranged their entire schedules just to help me with a task I found myself unable to complete. I have felt their prayers in my darkest moments and I have seen their love in both the big and small gestures. God has shown me a great kindness in that He has sent the right people for the right time and I am grateful. They are my people and I appreciate them much more than they will ever really know.
Find a cause and fight!
In true Sydney fashion, as soon as I learned of my diagnosis, I needed to throw myself into something positive, a cause. My doctor had suggested I familiarize myself with the organizations and associations dedicated to Lupus and auto-immune diseases and in my research, I learned of the Walk to End Lupus Now events – which was perfect for me! So, I decided I was going to walk, even if by myself, and set a fundraising goal of $100 – I didn’t think I would reach that goal. Until my friends and family blew my mind, joined the cause, and helped me raise more than $3,000. When walk day came, I had 30+ loved ones walking with me. Mind blown. Setting a goal to do my part and having my loved ones help me reach that goal helped me to feel empowered to live well with Lupus and make this a yearly goal until we finally find a cure!
So I think I’ll end here. I have struggled a lot with why God would allow Lupus into my life and I have, over and over, plain out asked Him why. WHY would He give me the hands to create and to write but then allow those same hands to fail me through pain. And He has, consistently, over and over, replied with, “Because I have created you to carry them all. The gifts and the pain.” It reminds me of Paul’s struggle in 2 Corinthians 12, when he so beautifully explains… “Three different times I begged the Lord to take it away. Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. That’s why I take pleasure in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong.” (vs. 8-10).
Above all else, I have learned… God is forever faithful. He is still writing this story and since I am still here, I will pray for the strength in my hands to carry every single gift and plan – we are not done yet.
All my love,