Reflections on this past year 2012
Kerissa • December 31, 2012
It’s hard to believe that my first blog post was written one year ago today! As I reflect on this past year, I thank God for the endurance He provided me and my family to make it through 2012. Now that this blog has been up and running a full year now, it’s easy for me to not fully ponder its title sometimes. But as this year comes to a close, I’d like to once again think about these three words: Pain with Purpose .
These past months have been filled with things I never would have imagined:
I even completed a medical assisting program at the beginning of the year,
and I just don’t know if anything will ever come of that…
The list can go on and on…
“Our natural inclination is to be so precise—trying always to forecast accurately what will happen next—that we look upon uncertainty as a bad thing. We think that we must reach some predetermined goal, but that is not the nature of the spiritual life. The nature of the spiritual life is that we are certain in our uncertainty. Consequently, we do not put down roots. Our common sense says, “Well, what if I were in that circumstance?” We cannot presume to see ourselves in any circumstance in which we have never been.
Certainty is the mark of the commonsense life—gracious uncertainty is the mark of the spiritual life. To be certain of God means that we are uncertain in all our ways, not knowing what tomorrow may bring. This is generally expressed with a sigh of sadness, but it should be an expression of breathless expectation. We are uncertain of the next step, but we are certain of God. As soon as we abandon ourselves to God and do the task He has placed closest to us, He begins to fill our lives with surprises. When we become simply a promoter or a defender of a particular belief, something within us dies. That is not believing God—it is only believing our belief about Him. Jesus said, “. . . unless you . . . become as little children . . .” ( Matthew 18:3 ). The spiritual life is the life of a child. We are not uncertain of God, just uncertain of what He is going to do next. If our certainty is only in our beliefs, we develop a sense of self-righteousness, become overly critical, and are limited by the view that our beliefs are complete and settled. But when we have the right relationship with God, life is full of spontaneous, joyful uncertainty and expectancy. Jesus said, “. . . believe also in Me” ( John 14:1 ), not, “Believe certain things about Me”. Leave everything to Him and it will be gloriously and graciously uncertain how He will come in—but you can be certain that He will come. Remain faithful to Him.” (Gracious Uncertainty by Oswald Chambers)
But thanks be to God, my pain
is not with
out a purpose
!!
All this is not in vain. As these lyrics say, “Jesus, You have ordained all things
to dwell in Your purpose
.” (Holding My World by Kristian Stanfill) Yes, I don’t understand a million things, but all I need to do is trust my Savior. He is soo much wiser than I am. And how sweet it is to share in Christ’s sufferings!
All this is not in vain. As these lyrics say, “Jesus, You have ordained all things
to dwell in Your purpose
.” (Holding My World by Kristian Stanfill) Yes, I don’t understand a million things, but all I need to do is trust my Savior. He is soo much wiser than I am. And how sweet it is to share in Christ’s sufferings!This coming year is full of uncertainty, but I rest in God’s sovereignty. A couple years ago, my sis shared this devotional by Oswald Chambers. It’s so fitting as the new year 2013 comes upon us. I wanted to share it with you:
“. . . it has not yet been revealed what we shall be . . .” — 1 John 3:2
Certainty is the mark of the commonsense life—gracious uncertainty is the mark of the spiritual life. To be certain of God means that we are uncertain in all our ways, not knowing what tomorrow may bring. This is generally expressed with a sigh of sadness, but it should be an expression of breathless expectation. We are uncertain of the next step, but we are certain of God. As soon as we abandon ourselves to God and do the task He has placed closest to us, He begins to fill our lives with surprises. When we become simply a promoter or a defender of a particular belief, something within us dies. That is not believing God—it is only believing our belief about Him. Jesus said, “. . . unless you . . . become as little children . . .” ( Matthew 18:3 ). The spiritual life is the life of a child. We are not uncertain of God, just uncertain of what He is going to do next. If our certainty is only in our beliefs, we develop a sense of self-righteousness, become overly critical, and are limited by the view that our beliefs are complete and settled. But when we have the right relationship with God, life is full of spontaneous, joyful uncertainty and expectancy. Jesus said, “. . . believe also in Me” ( John 14:1 ), not, “Believe certain things about Me”. Leave everything to Him and it will be gloriously and graciously uncertain how He will come in—but you can be certain that He will come. Remain faithful to Him.” (Gracious Uncertainty by Oswald Chambers)
May we all remain faithful to God this new year!
"I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world." -John 16:33-
Dear friends, I’d really appreciate your continued prayers. 🥺 Thank you for being on this journey with me through the good and bad. ❤️ Last year, I had a sleep study where I shared that I was diagnosed with moderate Central Sleep-Disordered Breathing (central apnea happens when the brain doesn’t tell your body to initiate breaths). It was noted that I stopped breathing about 17 times per hour. Well, my neurologist wanted me to get yet another sleep study last month to make sure this neck weakness hasn’t caused worsening apnea. And I’m sad to share that the results were much worse than last year’s. :( I thought last year was bad, but this latest study shows that I stopped breathing more than 40 times per hour (almost 400 times total through the whole night). 🥺 This was hard to hear and also such a reminder that God is the one who gives us “the breath of life” (Genesis 2:7) every minute. It’s by his mercy that we wake up to each new day. ☀️ What makes my case complex is that my esophageal sphincter has been affected by the mitochondrial disorder—it’s weak, so when air from a sleep machine is pushed down into my lungs, bad throat gurgling happens which keeps me up at night because my esophageal sphincter can’t close all the way like it should. :( My appointment with the rheumatologist was yesterday, and I wish I could say she gave a concrete diagnosis of what’s been happening these last several months…but that wasn’t the case. 🥺 I have to get more specific labs done. She also ordered x-rays of my hands and feet to check for possible spots of rheumatoid arthritis or calcinosis. The doctor said sometimes a new condition happens gradually, and it’s a wait-and-see type of situation. 😥 If these additional tests and labs still don’t give a clear cut answer, I’m so glad I have a second opinion with another rheumatologist at the end of June. This one sounds especially good because he’s a DO (doctor of osteopathic medicine) and offers a whole-body approach regarding treatment. Could you please pray something can be done soon as my quality of life continues to be rough, and these latest symptoms have been going on for half a year now. :’( Hard to believe October was 6 months ago! All this time, I’ve just been waiting.. I did ask my PCP at one of my appointments if he ever orders treatment for something even without a definite diagnosis, and he said “yes” which was encouraging to hear. His family leave is almost over, so I see him again soon. Just finished a virtual follow-up with another one of my amazing doctors this afternoon. 💜 She knows a very specialized neurologist in Washington who has his own private practice. She wants me to see him and hopes he’ll be able to connect all the dots and see the bigger picture. So blessed by all of my many doctors who try their best to help me! 🥲 I started the process in applying to the Undiagnosed Diseases program through Harvard (it got pretty delayed because of my 2 mitochondrial crashes in November and December). My application has been assigned to the Seattle clinical site. Please pray that the doctors who review my case will be able to accept me as a patient and find the genetic defect causing my mitochondrial depletion. The UDN acceptance rate is about 40%.. I saw this quote recently by Martin Luther and just had to hand letter it (so thankful for one of my neurologists who increased the anti-seizure medication which has been helping to decrease my hand tremors). ❤️ This statement by Martin Luther is such a beautiful reminder. All that’s happened lately has been the hardest trial, but I’m praying that I will persevere and bear this cross daily to bring honor to the Lord. I know my life is in his loving hands. I’m thankful for God’s promises in Romans 8:28–“And we know that for those who love God all things work together for good, for those who are called according to his purpose.” ✨
Hi, friends, I went to see my neuromuscular neurologist in Seattle last month, and since there are no neuromuscular specialists here in Oregon willing to see me, he kindly placed a referral for me to see a neurologist he trained who practices in Vancouver, WA! That appointment was originally scheduled for late April, but this new doctor moved it way up, and I was able to see him at the end of January! 😊 I’m so grateful for him, and he seems knowledgeable about mito. He told us that I “am easily the most complex patient he has ever seen.” 😥 I had to get a very painful test completed called an EMG (electromygraphy). It involves having big needles (larger/thicker than acupuncture needles) placed and pushed repeatedly into my neck and shoulder muscles. 😢 Hurt so bad!! I’ve had this done more than once on both legs, but it was much more painful on the neck! He wanted this test to check for active myositis since my MRI was inconclusive. Well, the results show that this progressive neck weakness is due to mitochondrial disease progression, and not from myositis. Whenever I have a “mito crash,” I’m usually able to slowly bounce back afterwards with time. But since I’m not recovering, he explained there’s degeneration going on and that my mitochondria are dying. That was hard to hear. 😢 We may have an idea why my condition is worsening quickly.. I received results from an extensive autoimmune panel which shows that 2 labs came back abnormal for a potential lupus diagnosis. We’re not positive I have it as I need more tests done, but my neurologist said that could definitely be what’s causing this mito progression. I have to see rheumatology now, but unfortunately, OHSU denied to see me. In my previous post, I mentioned that my pain doctor referred me to palliative care. Well, they, too, turned me down…. It’s just hard to fathom that multiple specialties at THE top hospital in Oregon won’t see me because I’m too complex…it’s so isolating and lonely. 🥺 Since my PCP has a new baby girl and is out on leave for 2 months again, I’m so grateful for my GI specialist’s help—it was kind of him to place a referral for me to see a rheumatologist at Providence. That appointment is in April. Please pray my whole medical team will be able to find out the cause of why I have harmful antibodies in my blood. It has now been 4 1/2 months since this all started. Time seems to crawl, yet at the same time, pass by quickly. My mitochondrial symptoms continue to worsen. For example, if I have a virtual visit with one of my doctors, just lying in my recliner and talking to them for 20 minutes causes horrible nystagmus afterwords. 😭 If it’s true there’s something autoimmune going on like lupus, it’s using up all the limited energy I have.. 😔 Could you also pray that the mitochondrial disease progression will slow down? I wanted to share an answer to prayer—you may recall I posted last month that my Seattle neurologist sent a new referral for me to see my mitochondrial specialist in San Diego as it’s been 4 years since I last saw him. Well, even though he’s semi-retired, I’m so happy to say that he accepted me which is a blessing from God! Isn’t that so wonderful? 🥹 He’s booked out ‘til September! But I’m not physically well enough to see him now anyways, so we’re praying my health will show some improvement 7+ months from now and I can travel then.. The Lord recently led me to The Tapestry poem written by Corrie Ten Boom. If you aren’t familiar with her, she was a faithful Christian during World War 2 who survived Auschwitz and the holocaust! You may have read this poem before, but knowing her testimony and how she had to go through extremely hard trials makes The Tapestry even more meaningful/impactful. ❤️ She is an example to me, and I hope this is an encouragement to you as well: “My life is but a weaving Between my God and me. I cannot choose the colors He weaveth steadily. Oft’ times He weaveth sorrow; And I in foolish pride Forget He sees the upper And I the underside. Not ‘til the loom is silent And the shuttles cease to fly Will God unroll the canvas And reveal the reason why. The dark threads are as needful In the weaver’s skillful hand As the threads of gold and silver In the pattern He has planned. He knows, He loves, He cares; Nothing this truth can dim. He gives the very best to those Who leave the choice to Him.” -Corrie Ten Boom
