What a day!

Kerissa • August 15, 2012

Since my voice is gone (I’ll explain why in a minute ;), I decided to blog now cuz I have nothing else to do…just kidding.  But really, I pretty much can’t eat or drink, and I’m so hungry since I haven’t eaten since yesterday..  Anyway , here’s the story of my day:

Once I arrived at the pain center, I got checked in and was able to see my favorite nurses.🙂  They’re the sweetest!  I also met a new fellow.  He’s so kind and compassionate.  It’s hard to believe that this is the third set of fellows that I’ve seen so far!!  When my pain dr. came in, I asked him, “Are we ready?”😉  Procedures are nerve-wrecking.  He laughed and told me he’s ready emotionally!  Once I was on the procedure table in the “operating room,” my docs used ultrasound to locate all the structures and arteries for safety reasons and to try to find a good spot to block the pain.  But they had to resort to fluoroscopy only because ultrasound wasn’t giving them a good view of where to inject the medications..  Saying it was painful is an understatement.  And choosing to stay awake probably didn’t help..  They had to really dig their fingers deep into my neck to feel for the vertebrae.😛  It was hard to breathe cuz they were pushing so hard.  I ended up having to get “poked” twice because the first area didn’t work to inject the medications…this meant they had to dig even more!  Despite their painful probing, I’m so thankful for them.  They were able to keep a light and fun attitude in the midst of a challenging procedure.  They called me a “champ” and a “trouper,” and they kept telling me I’m doing great.  My nurse held my hand and stroked it, haha.🙂  She’s the best.  The procedure was pretty long, so once they pulled the needle back out and sat me up, I was so relieved!  Soon after it was finished, I moved my hand and looked at it.  The swelling reduced, and the color was better!🙂  Even the pain went from a 9 to a 1-3.  Everyone was so happy.  Within minutes, my left eye started drooping which is called Horner’s Syndrome.  Thankfully, that’s only temporary because it’s a “good” side effect of the block.😉  When I went down to the lobby, I suddenly lost my voice which is also another good side effect because it tells my doctors that they injected in the right place.  All through physical therapy, I had to whisper to my therapist, and he kinda had to do all the talking, haha😉  It was pretty humorous.  After PT, I ran into my hand therapist.  It was so nice to catch up a little bit.  He jokingly told me I’m going to waste away since I haven’t been able to eat.😉  I also can’t cough or yawn cuz my nerves are temporarily not able to control my vocal cords, trachea, etc.

So here I am, still not able to talk or eat well.  If I try to swallow, I sometimes choke.  My neck hurts really bad, too.  I’m trying to wait patiently for all this to pass!  I’m to keep a pain diary and record my pain level every hour for today, then once every day until I fill out the whole page.  I’ll be seeing my pain dr. in a few weeks for follow-up..  I’m not sure what’s ahead…these blocks are temporary, but I really pray the severe pain stays away for at least a month!

Thank you for your prayers!🙂  God is good all the time!  I’m so blessed.

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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