Awareness

September 24th may or may not hold meaning for you. For me, it signifies a day of awareness. A day or remembering the 12 years of my life with no definitive diagnosis for the cause of my failing kidneys, high blood pressure, low energy, and strange seemingly unexplainable clotting problems.

September 24th is aHUS Awareness Day. aHUS stands for atypical Hemolytic Uremic Syndrome. It is a disease where small blood clots form in tiny blood vessels throughout the body.

aHUS awareness 2017

I became ill  in 2001. Because aHUS is an ultra rare disease, meaning in the United States, fewer than 200,000 people are affected, it was very difficult for me to receive a diagnosis.

Finally around 2013, I received proper testing and thus a definitive diagnosis of aHUS was made. About 2 years after that, I began receiving the life saving treatment (not cure), Soliris, as a bi-weekly infusion.

Last week, I was fortunate enough to attend my first conference through the a HUS Foundation. It was a wonderful time of connecting with other patients and their families, learning about the disease and treatment from an experienced doctor, sharing stories of hope, and encouraging one another. My prayer was that God would use me to encourage even just one other person and that I would learn something new.

God didn’t waste any time at all…He never does! The very first family we met at the conference was a lovely family of a little 4 year old boy who had been diagnosed at 9 months of age. Simply introducing myself as the patient and mentioning that I first became ill back in 2001 was enough to cause their jaws to drop and say without filter, “And you are still here! Wow!” There you go, God, encouraging even just one person!

Many inquired about why I had never been to a conference before. With how much I enjoyed the conference, sitting amongst those who understand my life with aHUS, I had to really think…why had I never attended a conference before?

A big reason was probably all of the years of not knowing for sure whether or not I had aHUS. Why pursue learning about a disease I may not have?

Another reason was I imagined the conference being sad and depressing. I imagined sitting around listening to sad stories of suffering from people stuck in this disease. What I found was the opposite. I saw life! Children living their lives as children with aHUS: playing, laughing, learning, growing. Adults with families and careers living their lives as warriors. Family members spreading the word about diagnosis and treatment, learning all they can, fundraising, raising awareness.

Fullerton conference

As a group, we even attended Disneyland, the happiest place on earth! All of us connected by the same disease, laughing, enjoying our lives!

Awareness provides answers, diagnosis, and treatment. Take a minute to check out the aHUS Foundation website: aHUS Foundation

Here is a link to my story which I shared on Facebook: Facebook Live

Thank you for reading my story!

In Discouragement, Consider Him

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us,  fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross,scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart. Hebrews 12: 1-3

Every two weeks, I go through the same routine. Get up early. Wake up my youngest daughter. Pack a bag with some snacks and water. Load up some school work and something fun for Abby to do after completing school work. Head to an infusion center a few miles from my house to receive a life-saving medication, which is providing more dialysis-free/kidney transplant-free time for me. More about my life with aHUS here,  here and here.

Today was the day. Discouragement flooded in. Maybe it was because it was Wednesday and my usual Tuesday routine was disrupted due to a conflict at the infusion center. Maybe it was the sun beckoning me to be outside. Maybe it was my daughter’s groans expressing her complaints about getting up early with me. Maybe it was the bruise on my forearm from the previous IV. Or, maybe it was just the enemy’s tactic that morning to pull me down.

IV pic

What I know is that discouragement gets me to focus on none other than me. I am inward focused, thinking about, meditating on, and dwelling on my circumstances. Discouragement gets me stuck in my expectations and hopes and how things might have been. Discouragement leaves me thinking things like, “I don’t deserve this”.

But, the final sentence in the Hebrews passage above is verse 3 in which Paul instructs us to, “Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart“.

Consider: to think carefully about, regard with respect, pay attention to.

Paul in essence says, “Stop thinking about what is trapping you in sin. Keep running your race. Think about Jesus.”

Messages such as Hebrews 12: 1-3, always had me thinking something to myself along the lines of “think about Jesus and the torture and death He endured. Lisa, you can endure another needle poke, another day of fatigue, more trials, etc.”

I think there is some merit to that, comparing our circumstances to others who have gone through worse or are currently in a deep struggle.  When discouragement entrapped me today, something that helped in taking my eyes off myself was just that.

I remembered the patients in Australia who have a petition going to attempt to allow them to receive the medication I so easily receive. I remembered the friend fighting cancer with little strength to take care of her family. I saw the homeless couple in the parking lot rearranging their life’s belongings in their car. I focused on the friend with 3 foster children, pouring out her heart each day so the children can find healing. I thought about the lost, having no knowledge of the Loving Father they could find refuge in.

But, I am beginning to see the Hebrews passages in a different light. Rather than only comparing my suffering to Jesus’ suffering, I am beginning to see the magnitude of who He is.

The suffering He endured was for me.

The suffering He endured was necessary.

The suffering He endured met the requirement.

Jesus is better.

If you don’t know, dear one, Jesus is better. He is good. He is to be trusted. He is above all. He holds it all together. When you are in the midst of your trial, you must remember. You must consider. Jesus is better.

sunset cross