But first...


First, let me tell you: GO TO SPARTA, WISCONSIN. Mom and I went over the weekend, and it was a blast. I took lots of photos and I can't wait to tell you all about it. My 31st birthday was spectacular. Including a wonderful bonus conversation with my bro-bro and lots of thoughtful Facebook messages, texts, and phone calls. 

Things took a "less fun" turn yesterday evening when my red dots returned. Here, I'll show you....

They are a little hard to capture in a photo. 

Basically, over the last 36 hours, I've become covered in red dots. And that only means one thing: no platelets. 

My red dots are tiny, so if you weren't looking, you wouldn't notice them very easily. I'm glad about this. 

The red dots sometimes form in clumps. Sometimes they stand alone. I get them on my legs, arms, and throughout my mouth. On my tongue. And even, today, a tiny dot on the tip of my nose.

This morning, Mom and I came back a little earlier than planned so I could get a blood test. I knew my count would be really low. I could feel it inside. I could almost feel them plummeting this time. But still, I hoped my gut was wrong.

And then the results came. 1. A count of 1. Again. Twice in a month. A new record for me - a record I would have preferred to avoid. 

After seeing my results, I cried my eyes out for 3 minutes. Ugly cry. Ugly cry that made my stomach hurt. A cry of frustration, sadness, and exhaustion. I am exhausted of red dots and single digit counts. I am exhausted of disrupted plans. I am exhausted of this disease. It has now been 4 years. 

I am ready to be in remission. I am ready to close this chapter. I don't want this anymore.  I just really, really, really don't want ITP. I will never take another platelet for granted. Just please, God, please please please cure me. I do not want this for the rest of my life. 

O, Lord, hear my prayer. O, Lord, hear my prayer. When I call, answer me. O, Lord, hear my prayer. O, Lord, hear my prayer. Come and listen to me. (a Taize hymn from the ELW hymnal)

Thankfully, I do not need to be admitted to the hospital. My doctor is allowing me to do the initial infusion as an outpatient (I'm typing to you from the Infusion Therapy Center) and then come in for a few cbcs over the next several days. I just need to be cray-cray careful because of the "spontaneous bleeding/falling risk" and all that jazz. 

I happen to have the week off for vacation, so I guess I'll just be taking a little something called a "Careful Vacation." That's okay, right? 

Well, it has to be okay. So it is. 

The IVIG dose is pretty high this time because my count got to 1. I'm hopeful that God will grant me a bonus birthday gift of reduced side effects. We shall see. 

I feel peeved. And confused. Sad, too. Why do I have to have this? I'm being so intentional with all my wellness choices, and still....no platelets. There is seriously no rhyme or reason. Which is what Dr. Hook has said from the start. There is no rhyme or reason. But I seek for one anyway. I long for one. I long for a rhyme or a reason...because then I would know a way to fix this. 

Sometimes I wonder....

-Is there some lesson I'm supposed to be learning?
-Should I be writing about this? 
-Is there some person I am supposed to help down the road...and all of this will be worth it?
-Is this all just random chance? 
-Why why why why why why why?

I usually don't wonder about the "why" anymore - but today, I am wondering why. 


When Mom and I were in Sparta, we went bike-riding. There are some long train tunnels that are now part of the trail. I was pretty scared to go through one. They are long, dark, and damp. Very dark. Very, very dark. (And I am scared of the dark).

But this refrain kept going through my mind: "When I am brave, it heals me." 

As we walked our bikes through the tunnel (a requirement for everyone who enters the tunnel. You have to get off your bikes and walk them through): I whispered the refrain again and again. 

When I am brave, it heals me.

When I am brave, it heals me.

When I am brave, it heals me. 

It helped. A lot. 

The nurse tonight was nervous about putting in my iv since my count was 1. It's a little/lot scary because if the tech or nurse misses the vein, it can be a very bloody situation. It has only happened to me once. And it was definitely the scariest experience of my life. It was nuts. Blood and more blood. And fear. 

The words from the tunnel ran through my mind.

When I am brave, it heals me. 

When I am brave, it heals me.

When I am brave, it heals me. 

The nurse did a great job. She got the iv in with one great poke. 

Cures can be hard to come by in this life. There are lots of sicknesses and situations that don't have an easy cure. Some can't be cured at all. 

But there can be healing, even when there is no cure. 

And even though I feel really, really, really, really, really annoyed today about whatever is happening inside my body, I also feel really, really, really, really, really thankful for my body. I am thankful that my body and I are not enemies. We are friends. And overall, we've got a good thing going. 

I am making peace with all that does not make sense.
With all that is not "fair."
With all that disappoints. 

I am learning to be brave. And it heals me. One cell at a time. One platelet at time. 


  1. Oh, Emily. My heart hurts for you. We continue to pray for healing and wellness as you endure this process again. As my dad always said, "chin up." Hope the headache won't be as bad as last time. God's Blessings on you dear one.

  2. Glenda and I are letting our prayers rise up like incense.....

  3. Lifting you up in prayer. I once heard someone say that peace is not the absence of affliction, but the presence of God. May you have peace.

  4. Hang in there Emily! Maybe you are going through this to help the doctors learn, maybe to help others with the same issues, whatever it is you will be great at it as you are at everything you set your mind to. Will be praying for you.
    Wendy K.