Feeling refreshed!

Kerissa • July 28, 2012

Just got back from a wonderful vacation with my family in Redmond, OR.  It was beautiful there!  Despite three episodes which I’ll explain in a minute, the trip was so refreshing, and I loved spending lots of time with my family and soaking in the sunshine!  We watched movies together, played several wild card games, went on bike rides and walks, enjoyed time in the pool, tackled a challenging putting course, and the list goes on!  It was a very blessed vacation.

Here are a few pics that my brother took of me

my “deer” friend 😉

 

The morning we left for Redmond, I squeezed in a last PT session.  As of that appointment, my therapist is now trying to have me not see him for at least one month.  We’ll see how this experiment goes..  I really wanted to have no problems whatsoever with CRPS, EDS, and POTS on the trip, but…that was not to be.

One afternoon, my siblings and I went for a bike ride.  I was doing quite well for a time, until we ended up at this huge (and I mean HUGE) and steep hill.  I got off my bike to try walking up it, but suddenly I couldn’t even do that anymore.  My legs wouldn’t move, and I developed a terrible, pounding pain in the center of my brain.  I quickly sat down on the pavement to rest, and I started getting dizzy.  I really thought I was going to black out from the POTS!  I definitely didn’t want to go to the ED.  Thankfully, I was able to make it back to the condo but it was kind of a blur.  For a long time, the pain in my head didn’t go away.  It felt like a vein in my head was going to rupture which can be a symptom of EDS.  So grateful to the Lord that that didn’t happen!

Another day, I was fixing my bed, and my left middle finger gave way and buckled under.  Now it really hurts at the first joint.  I’m not sure if this is EDS, CRPS, or both!  My fingers get stiff and swollen, and it occasionally becomes hard to “make a fist.”

And then, another day, I was playing racquet ball with my dad and two of my siblings.  I enjoyed it immensely!  But then the palm of my left hand got scraped by a sharp plastic piece sticking out from the edge of the racquet!  Now it’s a little swollen.  Right now, I’m waiting to hear back from my hand therapist about both of these “injuries”..

So I’m really glad to be home.  I’ve had enough adventures for a time..

By Kerissa Lee May 23, 2025
How unspeakably wonderful to know that all our concerns are held in hands that bled for us. -John Newton
By Kerissa Lee April 30, 2025
"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- 
By Kerissa Lee April 9, 2025
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.” ✨