15 Years
"We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope.."
Romans 5:3-4
Hi friends,
I just wanted to let you know that my “consent call” with the UDN genetic counselor went well a few weeks ago. She explained what the process is like for those who are accepted into the study. The first step is an appointment with a biochemical geneticist at UW, but because I don’t currently need additional tests (like a muscle biopsy), this appointment can happen via telemedicine. That will be on July 21st! Once I have that visit, he will form a plan and discuss it with the UDN principal study investigators. :)
I unfortunately had to reschedule my tube change last month because my muscles were still feeling pretty weak from the moderate “mito crash” that happened in May, so Lord willing, it will now be replaced on July 25th. Would appreciate your prayers once again as these tube changes are always so painful.. 😥
I’m bummed to say that I’m still experiencing quite a bit of hip pain (despite weekly chiropractic adjustments and physical therapy sessions), so my PCP ordered an MRI arthrogram of the hip. Because an arthrogram is a full procedure with fluoroscopy and a gigantic needle (😭), they’re quite booked out and it’s not until late August. 😞 An arthrogram vs. a standard MRI will show us if I re-tore my left hip labrum.. In addition, my right shoulder joint continues to cause significant pain as well as clicking/popping sounds, so my doctor ordered an MRI of my shoulder.. Hopefully they can both be completed at the same time..
Some good news is that the rheumatologist I’ve been waiting 5+ months to see had a cancellation, so I can now see him later this week instead of the end of August! 😍 What a blessing from the Lord. Please pray for wisdom and that this doctor will have a clear picture of what could be causing all this joint pain..
I’ve been really reflecting these last several days because this month marks 15 whole years since this medical journey started. Somedays it feels like a nightmare that I can’t wake up from, but other times, God’s peace and comfort is so evident, and he has lovingly been carrying me through the hardest trial of my life. I know the Lord called me specifically to this path, and in a way, it’s special to know that I can “share Christ’s sufferings” (1 Peter 4:13, Philippians 3:10). These 15 years have flown by but also often dragged as I wake up day after day fighting mitochondrial disease and the other diagnoses. I wish this long journey could end soon. But Randy Alcorn wrote this recently, and I feel like it was meant just for me (especially the last sentence):
The Apostle Paul says, “I’ve learned the secret of being content in any and every situation…” (Philippians 4:11-12). Notice he doesn’t say, “One day God sent an angel to teach me how to be content.” No, he had to learn it over a long period of time. One reason God allows times of suffering in your life is to move your heart more completely to Him and to teach you His sufficiency. ❤️
God has definitely been showing me that he is sufficient in all things—in the good times and bad. Through the next 15 years, I pray that I will keep leaning fully on him and remember that “for those who love God all things work together for good, for those who are called according to his purpose” (Romans 8:28).
To close, I read this beautiful poem online the other day and wanted to share it because it’s so encouraging. The Lord has been so faithful and gracious through this long journey. I know he is with me and for me! 🥲 Thank you so much for praying for me these last 15 years—you truly help bear this burden! 💚
“Making Whole” by Rachel H:
Our God is a good gardener,
Even when it hurts to grow.
Every day He works in our lives
In ways we will never know.
He gets up early in the morning
To tend to the budding shoots
And water the fertile ground
That is slowly bearing roots.
His timing is held carefully
In His soil-stained hands.
He knows when to sow the seeds
And when to reap the land.
But sometimes we can doubt
If our God is really good
Because He gardens us in ways
That we don’t think He should.
When He prunes our dormant branches
Or pulls weeds from the ground,
We worry that this rooting out
Will last the whole year round.
But the gardener is patient,
Returning each morning with care.
Because He knows the kind of fruit
His plants will one day bear.
Just know a time will come
When our gardens will come alive,
And everything that was cut back
Will soon begin to thrive.
Our God is a good gardener,
Even when it hurts to grow.
Every day He works in our lives
In ways we will never know.
