What happened last week

Kerissa • February 14, 2014

Last week was tough.  For once, it’d be nice to have no adventures. ;P

Wednesday afternoon, I started experiencing a bad headache, but I wasn’t too concerned because I get migraines (they usually don’t last more than a day).  So I just waited for the headache to pass.  It was still there the next day, though, and I started struggling because of the pain.  My left drooping eyelid got especially bad.  And none of my usual nerve pain meds or Ibuprofen and Aleve touched the pain.  As I mentioned in my previous post, my neurologist wondered if I had a TIA or small stroke..  And so I headed to the ER.  Because of the snow, I couldn’t go to OHSU’s ER, and I hated that I had to go to a different hospital.  Long story short, that was a terrible mistake because this particular ER didn’t know “me” and my complicated medical history.  They didn’t even do a full neurological exam.  All they did was give me one hydrocodone/acetaminophen tablet.  They sent me home.

The next day, the headache pain was so bad.  I couldn’t eat much because of the nausea.  I started having balance issues and was also dealing with new right hand weakness.  So this time, my parents and sister drove me to OHSU’s ER.  This hospital is so awesome (it’s #1 in the state of Oregon ;).  They got me a room right away.  They did labwork and gave me lots of IV pain and nausea meds.  People with EDS are prone to aneurysms and strokes, so the doctors were concerned that maybe I did have something like that.  They ordered two emergency MRIs which I had done there in the ER.  Thankfully, the scans were clean!  The doctors told us I was probably dealing with a “complicated migraine” which is not just a simple migraine.  They’re complex and can cause weakness/neurological issues.  They gave me IV toradol for pain, but that unfortunately didn’t help.  So they put together a “migraine cocktail” you could say.😉  An IV magnesium drip, Reglan for nausea, and IV benadryl which has been shown to reduce pain.  My pain went down from a 9 to a 5, and my drooping eyelid improved.  We were in the ER for 8 hours.  But we arrived home at 2:45 AM, and I slept till 4 PM the next day!

The adventure wasn’t finished. ;P  I woke up because my blood sugar dropped very low (a bad issue associated with mitochondrial disease).  My heart was pounding, I was shaking, sweating, and extremely weak.  I laid on top of our stairs, unable to move.  My mom had to quickly spoon feed me grape juice to get my blood sugar back up.  It was hard for me to even suck from a straw because I was so weak.  I had to sleep a lot after that, and it was too exhausting to even watch a movie.

That episode on top of two ER visits did me in, and I’m still trying to get better from this weakness.

So that’s what happened last week.  How was your weekend?😉

By Kerissa Lee January 21, 2025
Hi, friends, First off, the piece of art above was hand lettered by me last year before all “this” happened. I’m sad to say that I only have 3 or 4 pieces left to share until I run out.. 😢 I went to see my neuromuscular neurologist in Seattle on January 8th. My neck weakness continues to progress which has been so scary. He said I need to get a neck MRI and some specific blood tests to check for polymyositis. If it is normal, though, his opinion is that this is mitochondrial disease progression. 😔 I haven’t seen my mitochondrial specialist in San Diego in more than 3 years (I started seeing him in 2014!), so I’m sadly no longer considered his patient. The neurologist sent a new referral to him, but I’m not sure if it will be accepted.. He’s almost 80 years old (one of the pioneers of “mitochondrial medicine”). And I don’t know if he’s cutting back on “new” patients.. Even if he did accept my case again, I’m currently not physically well enough to fly down from Oregon.. 😞 My quality of life continues to worsen ever since this unusual neck weakness started this past October. I know I’ve said this before, but I truly miss doing all of my favorite things (like hand lettering art) or even simple tasks (setting up my own IV infusions, vacuuming, washing hair, etc.). 🥺 Before October, I was even starting to drive to physical therapy or the grocery store. Yes, I’m 32 and still don’t have my driver’s license due to being preoccupied fighting mitochondrial disease for almost 15 years now. I never shared the exciting news that I was able to get my driver’s permit over 2 years ago, and it was so fun to drive myself to appointments close to home. Now, I can’t do any of the above which has been difficult to process. I shed tears every now and then just thinking about all that has changed. 😢 I’m having to go to bed around 6:30 PM to lie down and rest my neck. But I’m so uncomfortable from the pain, and I don’t fall asleep until after 3 AM every night. So my pain dr. referred me to palliative care. 😢I know it’s not hospice, but I’m still sad we’re at the point where I even need palliative care. Unfortunately, they’re most likely going to deny the referral (if they haven’t already) because we were told they only see cancer or heart transplant patients. I even checked if there’s palliative outside of OHSU, but they, too, see only oncology. It’s so hard that cancer gets a lot of funding, research, and support, and those with rare diseases are left “on their own.” It’s isolating and lonely. 🥺 I saw my PCP again, and he is just the best and full of compassion. ❤️ He placed the neck MRI as urgent and also ordered more labs to keep pursuing answers since all this is such an atypical picture if it was mito progression.. In case palliative turns my case down, my dr. told me that the internal medicine clinic has a complex and chronic pain management clinic (different from the pain center that I’ve been going to since 2011). He referred me to them to try and help me get more comfortable. I have a wonderful team of doctors and an amazing naturopath, but I’m even going to see a functional medicine doctor for the first time on the 23rd. Praying he could maybe have some additional insight on everything and will offer some fresh ideas for treatment as well.. I also have an appointment with the metabolic geneticist on the 28th.. I’ve read through the Bible more than once, but it’s amazing how the Lord points us to specific verses at just the right time. I don’t know about you, but sometimes I think, “I don’t remember reading this before!” Paul David Tripp’s newest devotional Everyday Gospel has been so very encouraging. He shared 2 verses from the book of Genesis where Jacob said that God “answers me in the day of my distress and has been with me wherever I have gone” (35:3). Several chapters later, Jacob also said that God “has been my shepherd all my life long to this day” (48:15). When I read that, I felt such peace. God spoke to my heart to remind me that He is with me and for me….in every circumstance no matter how hard. ❤️ Could you please pray that I can have the MRI completed this month and not have to wait many weeks? Pray that all of my doctors will have wisdom as my case is so complex. Lastly, could you pray that I will persevere and keep walking by faith? I feel so weary, not only physically but also mentally and spiritually. 😥 Thank you so much for praying for me all these years. ❤️
By Kerissa Lee December 13, 2024
"He alone is my rock and my salvation, my fortress; I shall not be greatly shaken." Psalm 62:2
By Kerissa Lee November 9, 2024
“Be still, and know that I am God.” -Psalm 46:10 
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