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because life is full of twists and turns

Tag: Mayo Clinic (page 1 of 3)

just this :)

Today I am writing a long letter to update my doctors at Mayo.  I really should have done this about 3 months ago, but it’s been a little crazy in my life!

Writing this update is interesting.  I am remembering back to the times when I have been the sickest and remembering times when my soul felt completely starved.  There were days that seemed hopeless.  My emotional bathtub was constantly overflowing.  Just getting out of bed was a struggle.  I was not only waging war against my body, but against my mind.  When you’re in constant pain for months on end, your mind considers things that otherwise would have seemed ludicrous.

Am I healed?  Well, no.

Have I found grace to keep pressing on?  Yes.

Does that make it all better?


I still have about 50 bajillion questions to ask God someday.  My theology and my mind have been stretched as I’ve sought answers to the endless parade of questions in my mind.  My eyes still well up with tears when I think about those dark, dark days.

Psalm 23 says that God will be with us when we walk through “the valley of the shadow of death.”  Some translators have said that it could also be translated: “when I walk through the valley of deep, deep darkness.”  That’s how it feels some days.  And it is something that few people can understand (truly, no one can exactly understand your situation as each one is unique)

I have a new sensitivity for theologies of suffering.  When someone else I hurting, I resist giving them the “pat Christians answers” that stings one’s soul like lemon juice in a papercut.

Some days I think about the “friendly fire” in Christianity.  When our own people are wounded and aching, why do we inflict more pain?

That’s all I have for today.  Nothing profound or new; just some reflections on living a hurting life.

p.s.  As I was digging through all my papers from Mayo I found some wedding planning stuff.  šŸ™‚  It’s fun to remember that even at that “low point” my mom and I were planning for the future.

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Mayo Clinic Trip – Summary

Here is a summary post of my time at Mayo Clinic.  I didn’t end up posting about my appointments on Thursday and Friday, so I’ll simply include those in here.  (Honestly, I’m kind of sick about posting about doctors and illness so this might be short – of course feel free to ask questions if I didn’t answer something).

Friday provided a lot of answers and we were so happy!  We found out that I had correctly self diagnosed myself with an extremely, extremely rare illness.  It’s not really a happy diagnosis, but there is something wonderful about finally having a name.  There is peace in having a name.

Overall we were very pleased with this trip to Mayo (our second trip).  It was an exhausting six days and we are still recovering, but it was worth it.  We received a lot of quality information for managing my primary illness as well as got medicine to help with my migraines.  And finally, we got an official diagnosis from an expert in a very, very rare illness.

We worked to maintain eyes for beauty and to express gratitude each day.  At times, Mayo seems so hopeless as there are suffering people all over the place.  It is easy to get fixated on getting well and on finding relief.  Yet I am reminded that more than needing a Healer for my body, I need a Healer for my heart.

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Mayo Clinic Trip – Day Four

8 appointments down, three to go!!

Today was lots of riding back and forth between buildings.  We started in Mayo, went to St. Marys, went back to Mayo and then ended at St. Marys.  Since I had 5 appointments today, we never even found time for lunch!

Yesterday was mostly focused on lifestyle changes.  Today was mostly focused on medication.  We met with one of my main doctors today and were SO happy with the appointment!  When we saw him in November, he hadn’t left a very good impression.  I’ve been dreading this meeting with him.  But it was really helpful.  He was so kind and he showed that he had spent a lot of time thinking about my specific case.  That was a blessing.

I might post more later, but as for now, I’m wiped out.  šŸ™

Daily Log:

Hours At Clinic:  8

Shuttle Rides: 5

Appointments: 5

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