“Afflicted in every way…”

Kerissa • Oct 27, 2016

“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.🙁 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 have been burning horribly lately.  I don’t know if the nerve pain is getting exacerbated by the change in weather or what.  My pain dr. did switch up one of my medications a little while ago, so it could be because that is not at a therapeutic level yet.

Physical therapy progress for my hip is still not where my therapists would like it to be.  The aching pain keeps me up at night.  I take some of my other pain meds, but that doesn’t always help, too.  I do have my ultrasound-guided hip steroid injection scheduled tomorrow, so they’re hoping it helps the pinching pain/stiffness.

We found out last week that my insurance denied my muscle biopsy tests through Baylor.🙁 We could have known this a long time ago, but the person in charge of pre-authorizing was on vacation.  And this task wasn’t referred to someone else!  So now my neurologist has to start the appeal process.  I have a love/hate relationship with health insurance..

I recently saw my primary care doctor, and I’m so so thankful for her!  I’ve never had a PCP like her!  She has been doing so much to try and make my coordination of care better.  She’s even working directly with the ER department at OHSU so that my ER mitochondrial protocol (that my neurologist wrote up last year) is implemented faster whenever I do have to be taken there..  She’s going to “note” that I shouldn’t share a double room when I need to be admitted.  Of course, some of this will be out of her control, but she would like the ER doctors to have a step-by-step guide for them to try and follow.

I started having pretty low Magnesium levels again despite being on daily IV Mg infusions.  This was causing horrible muscle cramping, and it was making my muscle weakness, nerve pain, and headaches worse.  I couldn’t even finish a full session of physical therapy at OHSU one day because my muscles were cramping up too much.🙁 My PCP talked with my nephrologist who quickly made arrangements for my IV Mg to be increased.  I now receive almost 50 GRAMS (not milligrams!) of Mg every week.  It’s so terrible how my kidneys aren’t able to hold on to Mg.🙁

This afternoon, I had my monthly follow-up with my GI specialist.  He is always so kind and thorough at each appointment!🙂 We went over my pulmonary resting energy expenditure results, and in his words, I am “a conundrum.”  The results are very confusing, so I won’t try to explain them here! lol  At this point, he doesn’t want to decrease my TPN.  I wish I could have a break from it, but he’ll re-evaluate next month..

A little while ago, I read a familiar passage in chapter 4 of 2 Corinthians, but this little phrase especially stood out to me this time: “afflicted in every way…”  This kinda rings true for me because mitochondrial disease affects so much.  But do you know what’s right after those 4 words?  “But not crushed.”  I looked up the definition of crush , and it means, “to deform, pulverize, or force inwards by compressing forcefully.”  All these symptoms I experience can be so heavy to handle (physically, emotionally, and spiritually).  But just a few verses later, these afflictions are described as light.  The complete opposite!  All this happening will not be able to “crush” me and weigh me down because I have the Lord Jesus on my side.  He, in His grace, fills me with strength to fight this health battle daily.   When the discouragement sometimes creeps its way in, I try to remember these verses, not lose heart, and view everything that happens in light of eternity.  Mito (and all that comes along with it) is preparing for me an eternal weight of glory beyond all comparison (2 Cor. 4:17)!!

By Kerissa Lee 16 Apr, 2024
Read Part 1 if you missed it.  | Part 2 | Just 2 days after I was discharged from the hospital, I started experiencing severe nystagmus (shaking eyeballs) along with nausea, vomiting, and retching. I didn’t know what was happening and was again so scared. 😔 I was told to go to the ED since I wasn’t tolerating any of my oral medications. The doctors gave me IV fluids and lots of different IV anti-nausea and pain meds. They told me I needed to be admitted and talked with the neurology and internal medicine departments to see which one should admit me. But….to my dismay, both teams made a bad judgment call when they decided not to have me admitted (my mom has since talked with a patient advocate for guidance on what to do if “this” happens again). Even the ED observation unit didn’t want to take me because I was “too complex.” 🥺 I was sent home still vomiting and in so much distress (with mitochondrial disease, anything like untreated vomiting/diarrhea is a big “no-no” to put it simply because it’s a huge stress on the metabolic system). My body was really struggling, and I experienced very drooping eyelids and worsening weakness all over. The next day, I was seen by my PCP’s colleague, and after much discussion, he directly admitted me to the internal medicine floor. I’ll always be grateful to him for his quick action and the very thorough letter he wrote. There were sadly no beds available, so I waited at home. But, the following day, God was so kind to bless me with a private room that became available. Once I was inpatient, the doctors tried to get a handle on the nystagmus and vomiting. All the usual IV anti-nausea meds didn’t resolve things, so they gave me an “off-label” medication that can sometimes help nausea. That did the trick, but another issue soon arose—I started showing signs of mental confusion. I remember not being able to explain what was on my mind, and if I did talk, it didn’t make sense! For example, 2 nurses were in my room helping each other, and I made a comment about them being married. 🫠 Another instance, my family later shared that I asked them if they could see the ocean out the window. I can’t recall a lot of my time in the hospital because I was so confused.. My mom wondered if the confusion was from the off-label nausea medicine, so the team immediately discontinued it. By God’s grace, that did the trick…. Hospital life was definitely a roller coaster. You know that whack-a-mole arcade game? Once one problem ended, another popped up. After not receiving proper nutrition for many days, I started trying to eat orally again and resumed j-tube feeds, but for some reason, I wasn’t able to tolerate either like before. My stomach became so huge and distended….even with the feeding pump setting of just one teaspoon per hour. It didn’t make sense, especially since I tolerated a high rate of tube feeds two weeks earlier when I was admitted for the neurological weakness. I kept trying to increase the tube feed rate, but my GI tract didn’t tolerate it. The doctors brought up the possibility of TPN (IV nutrition). I was very discouraged and so homesick. With no progress increasing the formula rate, I did in fact have to be placed on TPN. Emotionally, it was a struggle dealing with this new problem on top of the mitochondrial crash.. 😢 Up next: Part 3…
By Kerissa Lee 13 Apr, 2024
Dear friends, It’s been almost 3 months since I last blogged.. So much happened, and it’s very hard to believe how quickly things changed. I know many already know the whole story. But for those who haven’t heard it, I will try to recap here. It’s quite the tale, but I wanted to share it on my blog to look back on because God truly carried me through the unimaginable. ❤️ When I requested urgent prayer for the sudden onset numbness and weakness in my whole left leg back in January, I had a routine follow-up already scheduled with my primary care dr. on January 25th. I was so thankful I could see him right away for this new issue. I showed him my worsening weakness, and he sent me straight to the ED to make sure I didn’t have a condition called Guillian-Barre Syndrome (GBS). While waiting for a bed to open up on the neurology floor, the muscle weakness spread to my right foot and up my right leg to the point that I could barely lift both legs up. Words can’t express how truly scared I felt that I was going paralyzed. 🥺💔 It was the hardest time of my life, and I continually wept, not just because of the physical pain (which was the worst leg pain I’ve ever experienced) but also because of the emotional distress.. The “foot drop” in both feet was so severe that my soles were almost parallel to the hospital bed when laying down. It was devastating. Due to the weakness, I couldn’t even walk to the bathroom and had to use a bed pan. The team was concerned about possible heart/lung issues, so I had to be placed on a continuous cardiac telemetry monitor (which is different than the standard one). Twice, they asked me if I’d be okay with life-saving measures like getting intubated (placed on a ventilator) if the weakness kept spreading like it was.. I underwent countless neurological exams by nurses, medical students, residents, and attending neurologists. To rule out GBS, a spinal tap had to be done as well as extensive brain and spinal MRIs (cervical, thoracic, lumbar, and sacral). Not feeling well, it was incredibly difficult to lay in the very narrow MRI tube for more than 2 1/2 hours without a break. When GBS was ruled out, we still didn’t know what was causing the weakness. To be honest, in a way, I WANTED to have GBS because they explained GBS has a good treatment. So, not knowing the outcome and prognosis was very hard. 😢 Looking back, I remember how I shared a verse from Isaiah when I wrote my “2023 reflections” blog post at the beginning of this year: “Let him who walks in darkness and has no light trust in the name of the Lord and rely on his God” (Isaiah 50:10). When I posted that on January 1st, I never could have imagined how dark life would get. I knew God had a plan, but I was still so terrified. And there was nothing I could do but trust him (even though my faith felt so weak while in the thick of it). I cried so much and struggled with great fear. But in the midst of that dark time, I thought of a well-known passage from 2 Corinthians: “So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison…” (2 Corinthians 4:16-17). A phrase stood out to me: “light momentary affliction.” This trial weighed heavily on my shoulders….it definitely didn’t feel “light” OR “momentary.” I had so many questions. Could I surrender all and trust that God has my best interests at heart? I prayed that he would grant me the eyes to see everything from an eternal perspective and use this hard time for his glory and good purposes. After spending 9 days on the neuro floor, I was sent home.. The neuro team attributed this whole event to a “very unusual mitochondrial crash.” And only time would tell how I would recover. Up next: Part 2…
By Kerissa Lee 23 Jan, 2024
Hi, friends, I had a whole other post ready to go with some good news, but instead, I have an urgent prayer request. I started experiencing sudden onset numbness, tingling, and weakness in my whole left leg, and it’s been so scary. 🥺 It just came on out of the blue. I was doing so well with physical therapy each week (able to walk fast on the treadmill and leg press 40 lbs), and now, I have to limp because my left leg is soo weak. I really want to avoid the ED as much as possible, so I saw one of my doctors today. She’s concerned I’m having a big motor nerve issue. 😭 The plan is to see a physical medicine specialist, have a nerve conduction study, get an urgent MRI done, as well as see my PCP and pain doctor on the 25th and 29th for further evaluation/testing. I know I already said this, but it really has been so scary to lose function so quickly. Can you pray that I will trust the Lord and not worry? It’s been very hard, so I’d really appreciate your prayers and support in the coming weeks. Thank you so much. ❤️
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