Living with Lupus

A link to Rob Mayeda's blog was included in the weekly newsletter from the Lupus Foundation of Northern California. Honestly, it's one of the best articles I've read on what living with Lupus can be like and it's not even from the patient's perspective. One of the things that rang true for me when I read it was talking about his wedding vows and "in sickness and in health" and remembering how true that was for Randy and I. He was choosing to stand by my side regardless of what may come and I love him for that, and so much more.

Take a moment to check out Rob's blog post on his wife living with Lupus.

1 year since dialysis

Today is officially the one year anniversary of my last dialysis treatment. It seems like such a long distant memory now that I've been healthy for a year. Dialysis was 3 times a week (Tue, Thur, Sat) from 7am-10am in Cupertino (about 45 minutes away). I think back on those times and although they were physically and emotionally rough, I truly am thankful for going through it. I became much stronger in my faith, in compassion for others, and it truly has made me who I am today.

And we know that in all things God works for the good

of those who love him, who have been called according to his purpose.

Romans 8:28

Cheat Post

I'm going to cheat for this post and share something that I posted on another website. Plan B is all about the road we didn't think we'd be taking for our lives, and the good that can come out of it. If you know me, you probably know my story so I apologize for sharing again...but it's who I am.

My Plan B

April 2nd, 2010 at 12:56 PM

My plan A definitely didn't include being diagnosed with an auto-immune disease (Lupus) in my early 20's. I was 23 and told I have a disease that no one knows what causes it, there is no cure, and it can and more than likely will get worse and claim one or more organs. They were some dark times of not understanding and seeking something "more". My then boyfriend (now my husband) stayed by my side and gently suggested checking out churches. He was raised with a Christian background, I was raised Catholic but didn't have a relationship with Jesus by any means. The words the pastor said that first Sunday seemed to be taken right out of our very conversation from the night before. The Holy Spirit was definitely moving in me and I accepted Christ. Physically it was tough but we were still working on maybe a plan A-. We adopted a beautiful baby boy and things were going very well. Fast forward 10 years and we knew my kidneys were starting to fail so my nephrologist started putting into motion the things I'd need to do to get on the UNOS waiting list to receive a transplant. December 14, 2008 was the day that plan b came screeching into place. My husband awoke to me, his bride, having grand mal seizures. The Lupus had taken my kidneys and I was in complete kidney failure at 31 years old. I was rushed to the local ER where I suffered 2 more seizures. I was started on dialysis 3 days later and began a regime of hemo-dialysis that was 3 days a week, 3 hours a day. It was tough being a mom, wife, employee and still driving 45 minutes each way to go to my exhausting dialysis treatments, but God blessed me with those as I was able to share my faith with many of the dialysis patients who had no hope left. 4 friends and family members stepped forward saying they wanted to be tested to donate a kidney to me. Such an amazing blessing since the wait list in California is at least 7 years long (please register to be an organ donor WHEREVER you live, it's the ultimate gift). One of the people that stepped up was a good friend of my husband and I who saw it as his duty as a Christ follower to give part of himself to save another's life. We ended up being as close of a match as if we are blood related (brings a whole new meaning to brothers/sisters in Christ) and Dan donated his kidney to me on July 17, 2009. I've always "understood" Christ gift on a superficial level, but it was last Good Friday when I was still on dialysis and Dan was going through testing to be a donor that it fully hit home - There is no greater love than to lay down one's life for one's friends John: 15: 13. Wow. That passage was displayed on the screens at our Good Friday service and tears streamed down my face as I thanked Jesus for his ultimate sacrifice and for blessing me with an amazing friend who was willing to put himself on the line as a Christ follower. I thank God for my plan B now. It was a rough road, but it made me who I am today as a Christ follower, wife, mother, friend, co-worker. I am passionate about organ donation and volunteer for an organization and through registering people to donate I am also able to share my testimony and hopefully save people's souls in addition to their lives. Just remember there is hope. God is a God of hope and faithfulness and if He brought you to this place, He will bring you through it. Blessings.

The Day Everything Changed

December 14, 2008. Who knew one day could change your life in so many ways. In the early hours of the morning I was awakened by my own screaming as (I later came to know) I was having a seizure. I remember Randy asking if I was okay and I wanted to tell him I wasn't, but couldn't even form words to talk. The next I don't know how many hours are a blur of mist and memories. Paramedics asking me questions to see if I knew who I was, where I was, what day it was. Waking up in the hospital to see Randy's scared face only to have another seizure. Getting transported over the hill in an ambulance to Kaiser San Jose. Waking up in the hospital. Being asked if I was claustrophobic because they were going to do an MRI. Waking up in MRI machine wishing I had said I was claustrophobic because I was SCARED. Knowing that I should pray because I was so scared, doing it and immediately being comforted by the Father's love and peace.

If you want to hear the whole story up until June, check out the Elevation podcast here. A friend named Keith shares his story first, and then I speak. Maybe about 10 minutes in. PS there's a happy ending to the story, Dan was a perfect match as if we were blood related and my new kidney is amazingly healthy) but that's for another time.

People often wonder where God is in times of struggle and pain. Honestly, He's right there beside you. He doesn't like seeing his kids hurt and struggling anymore than a parent on Earth enjoys seeing their kid hurt. The question is, how do you respond to God when the going gets tough, as it inevitably will. Bobby, a friend of our family & a local pastor, posted this quote recently:

God is most glorified in me when I am most satisfied in him…through trials.

-John Piper

I am eternally thankful for the trials I went through this past year for so many reasons, but the one that stands foremost in my mind is because it strengthened my faith in God. I have never had to lean and rely on Him in such a tangible way and I give praise for that. I would never change any of the health crisis that happened this past year, because it has shaped who I am as a follower of Christ. In 2010, and the rest of my life, I want to strive to be the person I was at that time - absolutely dependent on God.