"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- ο»Ώ
Dear friends, I’d really appreciate your continued prayers. π₯Ί Thank you for being on this journey with me through the good and bad. β€οΈ 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). π₯Ί 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. βοΈ 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. π₯Ί 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. π₯ 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. π 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! π₯² 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). β€οΈ 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.” β¨
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! π 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.” π₯ 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. π’ 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. π’ 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. π₯Ί 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. π If it’s true there’s something autoimmune going on like lupus, it’s using up all the limited energy I have.. π 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? π₯Ή 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. β€οΈ 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
"He alone is my rock and my salvation, my fortress; I shall not be greatly shaken." Psalm 62:2
“Be still, and know that I am God.” -Psalm 46:10 ο»Ώ
There is hope in every trial For I can trust the Lord He will turn my heart towards Him And help me bear the thorn So, in faith, I follow Jesus On the road not understood For I know that He is working For His glory and my good -CityAlight
"This hard place in which you, perhaps, find yourself, is the very place in which God is giving you opportunity to look only to Him." ο»Ώ Elisabeth Elliot
"I wait for the Lord, my soul waits, and in his word I hope." Psalm 130:5
"For I will satisfy the weary soul, and every languishing soul I will replenish." Jeremiah 31:25
Hi friends, It’s been a little while since my last medical update. I recently got back from another neurology appointment at University of Washington Medical Center. This appointment was with a headache neurologist regarding my migraines and other neuro symptoms. It was a very thorough visit, and I’m so thankful the Lord answered our prayers for […]
Hi, friends, I’m sorry it’s taken me a while to write a Seattle update on my neuro appointment. More than a week ago, our internet line accidentally got cut during construction—you never realize how much you use the internet until you don’t have it!! π Regarding the “new” symptoms I’ve been experiencing since April (migraines […]
Hi, friends, It’s been a little while since I shared a medical update. To recap, I’ve been experiencing buzzing in my right ear, and I lost the ability for my right eyeball to look to the right. I’ve also been dealing with nystagmus and migraines about every other day (sometimes every day). My pain doctor […]
I lettered this piece a couple years ago and never shared it until now. I’m so grateful to God that He “does not leave us as we are.” My earthly body is so broken from disease (more on that below), and to know that Christ will one day give me a new body—what a wonderful promise. β€οΈ For […]
Hi, friends. π I just wanted to let you know what’s been happening lately. In the middle of March, I started losing muscle control in my arms/hands. π If I’m holding something, my hand will flop but then regain control quickly. Or if I’m holding my phone to text, etc., my fingers will suddenly tap […]
Hi friends, *If you’re wondering why there are random bullet points, my website had an update, and when I press the “enter” button to make new paragraphs, it doesn’t seem to work. So using bullet points is the only thing I could think of to make spaces in between paragraphs. π
Anywho, I just wanted […]
Hi, friends, Wow, it’s been a while! I just wanted to check in and post a health update. π I’ve been home from the hospital for almost 2 whole months now which is so hard to believe. Time is definitely flying, but at the same time, my recovery from the mito crash has […]
Hi friends, I just had some prayer requests again. It’s been almost 3 weeks since I came home from the hospital, but I’m still really weak. So in addition to physical therapy, my doctor referred me to occupational hand therapy at OHSU as it’s so hard to open/hold things, hand letter, etc. (the above […]
Friends, could you please pray for me? After spending 10 long days in the hospital, I was finally able to go home on Friday. But it’s been very hard—I’m extremely weak all over, and I’ve also been having these horrible episodes where my heart rate shoots up, I feel hot and cold at the […]
Hey friends, Just wanted to check in with a medical update. Thank you so much for your continued prayers for me! I’m so grateful. The past few months have been a little rough since I last posted, and I’ve had to just take it one day at a time and lean on the Lord […]
* I shared this on Facebook and Instagram but wanted to post it on my blog as well since some of you here aren’t on social media. π * I originally had the background of this in blue, but then I remembered that today starts Mitochondrial Disease Awareness Week 2019! So I of course had […]
Hey friends, First of all, I’m sorry it’s been so long again since I last blogged. π Last month, I had my mitochondrial appointment in San Diego—traveling and the trip in general was hard physically (more details below), so when we got home, I had terrible nystagmus and other rough mito symptoms. And then, […]
Hey friends, It’s been exactly 2 whole months since I last posted—I’m sorry I haven’t kept you in the loop lately! In October, I had a tunneled central line infection (thankfully, it didn’t spread to my blood). My central line site was really tender and oozing a little. So my GI specialist quickly […]
Hey friends, It’s been more than a month since I last posted….and sometimes, no news DOESN’T mean good news. π This will be extremely long, but I want to document everything to remember….so here goes! About 24 hours after my hip labral repair surgery on August 10th, I went into septic shock (there […]
Hey friends, I’m sorry it’s taken me so long to write an update on how my neurometabolic appointment in San Diego went! Been trying to pull all my thoughts together on what we learned at the appointment. After updating my mito dr. on all that’s happened since I last saw him, he […]
“Instead of a river, God often gives us a brook which may be running today and dried up tomorrow. Why? To teach us not to rest in our blessings, but in the blesser Himself.” -AW Pink Hey friends, I’m so sorry that I haven’t blogged since October!! π November was a pretty busy […]
Hello friends, I recently had a long appointment with my urology surgeon at Doernbecher’s. She explained how this is a very major bladder surgery….and I was so shocked to hear her say that this surgery can last up to 12 hours….(for example, it could start at around 7:30 AM but not end until 7:30 […]
Hey friends, It’s been over 3 weeks since I last posted, and again, there’s so much to tell and to process. π But I will try to post an update for each medical specialty: Podiatry~ On September the 19th, I had toenail surgery under anesthesia to correct the ingrown toenails. Everything went […]
Hey friends, Just a short update. Since the day after Thanksgiving, I’ve been sick with low-grade fevers, a painful sore throat, swollen glands, a barking cough day and night, and terrible fatigue. The doctor thought at first that it was a bad virus, but now he believes I have a bacterial infection in my […]
“Pain is a forest we all get lost in Between the branches, hope can be so hard to see And in the darkness, we’ve all got questions We’re all just trying to make sense out of suffering, but You say I am blessed because of this So, I choose to believe As I carry this […]
“Joy is not necessarily the absence of suffering. It is the presence of God.” ~Sam Storms Last week, I threw up a ton again, and it never gets easier. π We don’t know what caused it this time…but my GI dr. thinks these vomiting episodes are from my gastroparesis/intestinal dysmotility. My feet […]
Hello friends, For those who didn’t hear, my grandma passed away the day after Thanksgiving. We had a beautiful service for her this past Saturday. We all miss her so much. :'( It sure is different not to have any more grandparents living. On November 20th, my GI dr. called, and I got diagnosed with […]
Hi everyone, Just wanted to let you know that things medically are going ok with me, but my grandma (my only remaining grandparent) is not doing well at all and is in the last days of her life due to congestive heart failure. π It’s been so hard to see her decline…the hospice nurse thought […]
Hey friends, My liver biopsy last Friday went very well! Thank you so much for praying! The doctors were able to obtain two specimens without complication. After the biopsy, though, my kidneys took a hit that weekend, and I suddenly gained 4 lbs. of fluid. π We weren’t sure what was going on and if […]
Hey everyone, I just wanted to let you know that I will be getting admitted the day after Christmas. I’m very thankful for my GI dr.—he’s working at the hospital and not in clinic all this week, but he arranged and coordinated everything so quickly! I’m not doing very well. The pro-motility drug I’ve been […]
Hi everyone, We thought this week would have been my scheduled admission to the hospital since I haven’t tolerated glutamine, but we’re trying one last thing to re-mobilize my small intestine. My GI specialist really wants to avoid TPN (he recently told us he has two critical patients in the hospital because of sepsis from […]
Hey friends, I’d appreciate your continued prayers! My small intestine is in bad shape. Still can’t tolerate j-tube feeds or solid food orally. And I’m now getting distended with just liquids… π The dysmotility in my small intestine has gotten so much worse. Mitochondrial disease is horrible! I’m being followed very closely by my GI […]
It’s so good to be back in Oregon!! π Missed my siblings so much! Last week alone, I had 8 appointments at CCHMC—that was crazy busy! But these past weeks were incredible, and I’m again so amazed at how thorough and caring the doctors/nurses are at Cincinnati Children’s Hospital Medical Center! I’m so blessed to […]
Hi, everyone! This morning, I saw the mitochondrial disease specialist and genetic counselor in the Human Genetics department at Cincinnati Children’s. We went over my history/new symptoms and discussed my nuclear mitochondrial exome sequencing results. For those new to my blog, I had my nuclear mitochondrial genes sequenced through a lab called Courtagen Diagnostics […]
Yesterday: Saw cardiology and orthopedics for my POTS disorder and back pain. Will update some other day about how these appointments went. π Today: It snowed about 4 more inches this morning here in Cincinnati! Sooo fun and beautiful. Had an abdomen x-ray to follow up on this GI test I had this past Thursday […]
I had a great neurology appointment today! Things are really moving along now. :o) This is what’s on my plate the next few weeks. She wants me to get another MRI, but this time it will be of my lumbosacral plexus nerves (isn’t that fun to say?). π She also ordered another diagnostic test called […]
Had a great day yesterday!! π So many of you have been so supportive and encouraging to me! Thank you for lifting me up in prayer. <3 That means so much to me. My pain dr. showed no sign of discouragement yesterday! He was very cheery and compassionate. π We discussed my MRIs and one […]
Everything is still raw, and I wept great big tears this morning, but I know all of you want to know the results of my MRIs, so here they are. I don’t have the report yet, but in one word, they are “normal.” I don’t understand. :'( I’ve asked God all morning, “Why??” I know […]
