The past few months have been quite a ride. As I process this particular chapter of my journey, I decided to share it with you as well. The format of this blog will be a little different than some and I encourage you to stop and listen to the songs Iāve included. Before we begin, I am safe, I am supported, and I am not seeking any sympathyāI simply believe in the power of story-telling.
On June 26th I got to see a live concert. I am not a big live concert fan but for my favorite musicians, I will absolutely make exceptions. Counting Crows got me through the first year or two of Covid and getting to see them play a small-ish venue with my dad was a special thing. They sounded incredible, almost exactly like the recordings, and played pretty much all my favorite songs. If you know me, you know I cry easily. āColorblindā has never been on my list of favorites but by the first chorus I had tears streaming down my cheeks.Ā
āI am ready, I am ready, I am ready, I am fine.āĀ
The day of the concert I noticed a weird sensation in my right foot. When I stood on the hardwood floor, I got the sensation that the floor was warmābut only under my right foot. I checked with my handsāno heat. Iāve had acute on chronic plantar fasciitis for years and that heel has given me consistent trouble. I assumed the heat sensation was some sort of swelling or plantar fascia related issue and went about my day.Ā
On June 28th I went to see a rheumatologist for a thorough evaluation. I had been worked up previously and given the old āsomething is happening, but weāre not sure whatā response. The exam went well; I talked about my daily pain and occasional inflammation. I liked the doctor. I was reassured that itās unlikely that my symptoms indicate a significant rheumatological problem.Ā
On June 29th I lay awake in my bed in the morning. The heat sensation I first noticed in my heel seems to be climbing my right leg. When I sit up and turn to get out of bed, something feels funny. Throughout the morning, it becomes clear that my left leg is a bit unsteady. Iāve experienced similar things before, typically with hip or back pain. Iām paying attention but Iām not worried. As the day wears on, however, things seem to be worsening. I stumbled going down the single stair into the garage, I develop an occasional twitch or spasm when sitting still or lying down, but only on the left side. While unfamiliar, these symptoms donāt prevent me from doing what I need to do that day. I will monitor it. I am not worried.
Over the course of the next week, my symptoms progress. I developed the bizarre heat sensation and pins and needles with occasional numbness on the entire right side of my body. When I sit on the toilet, it feels like the right half of the seat is heated. I have significant weakness on the left side of my bodyānavigating stairs is a challenge and Iām unable to lift my left arm above my chest. Iām walking with a pronounced limp. Due to the twitching and jumping on my left side, sleep does not come easily.Ā
It's been a week, itās time to see a doctor.Ā
Though I wasnāt able to see my primary care doctor, I was able to get an urgent appointment on July 6th. This was the kind of appointment that you read about on the internet with a bad taste in your mouth. I didnāt feel particularly listened to and I wasnāt very happy with the outcome. This doctor ultimately ordered blood work and a brain MRI, but only after I specifically and stubbornly requested it. I later discovered that the order was placed incorrectly⦠correcting this mistake and getting approval from my insurance took a full month. In the meantime, my bloodwork was inconclusive, and my symptoms persisted.
During the days following my July 6th appointment, I developed right-sided facial palsy.Ā
I cannot raise my eyebrow, I cannot squint, I cannot smile. I no longer feel like me.Ā
The numbness and tingling advance to the right side of my neck and head and I have an odd taste sensation and numbness on the right side of my tongue. The weakness on the left side continues to affect my mobility. I develop significant vertigo. I am battling constant, heavy fatigue.
On July 14th I see a second doctor, still not my primary care provider, for a follow-up. I explain the new symptoms and the unchanged symptoms. This was a better experienceāI felt listened to, I felt like this provider believed me and responded with an appropriate level of concern. She ordered additional blood work (for Lyme, in particular) and prescribed a low-grade steroid to help with the physical symptoms as well as doxycycline to address any potential underlying infection. Results of the blood work were inconclusive, I am still waiting on my insurance to approve the brain MRI, my symptoms persist.Ā
By July 20th, some of my symptoms have started to fade. The heat sensation and pins and needles on the right have improved. The weakness in my left leg has improved. I continue to struggle to use my left arm and I develop a burning and itching pain in my left shoulder, upper arm, and side of my neck. Iāve had two episodes of elevated heart rate that have occurred at the ends of long days after standing to take a shower. Both times, my heart rate hovered around 120-130 beats per minute for close to an hour before I could get it back into my usual range of 80-100. I continue to have persistent vertigo and fatigue. I continue to experience the facial palsy.Ā
The only time I feel normal is when Iām driving my car.Ā
By the end of July, the facial palsy starts to improve. Lingering symptoms include weakness in my left arm, burning pain in my left shoulder, headache, vertigo, and fatigue. A long day or a full day seems to have a significant impact on both the weakness and fatigue.Ā
My first MRI is scheduled for August 10th. I get referrals to see a neurologist and the soonest appointments I can get both locally and elsewhere in Pennsylvania are for February of 2024.Ā
The results of my brain MRI are not normal. They do not exactly provide much information either, however. Armed with my slightly-less-than-normal results, I begin the process of getting an appointment with a neurologist.
I am able to schedule an appointment with my primary care doctor for August 16th. After a lot of phone calls to local neurologists and a lot of phone calls to my doctorās office for very specific referrals, I am able to schedule an appointment with a neurologist in a cancellation spot for September 7th.Ā
I have an involved medical history. I trust my primary care doctor with, literally, my life. Finally being able to connect with her, explain my symptoms, get validation, and hear her opinion is a huge relief and comfort. I am motivated to keep seeking answers.Ā
By the time my neurology appointment rolls around, Iāve gotten very accustomed to dealing with my lingering symptoms. I am able to work part-time. Iāve made necessary accommodations for the changes in my body.Ā
The neurologist orders more blood work and two spinal MRIs. I schedule an EMG of all four limbs. We talk about possible causes. I begin to process a potentially life-changing diagnosis.
The results of my spinal MRIs are not normal. And, the surprise no one is ever planning or hoping for, they also reveal a significantly sized mass in my liver. My neurologist immediately orders an MRI of my abdomen, a referral to a gastroenterologist, and a lumbar puncture.Ā
The MRI of my abdomen indicates that the mass in my liver is benign, and, blessedly, offers no additional surprises. The gastroenterologist schedules follow-up imaging in the spring to monitor any changes to the mass.
On October 17th I had my lumbar puncture. I developed a spinal headache and spent October 20th in the ER before getting a blood patch which thankfully offered me some relief.Ā
On October 31st I was diagnosed with multiple sclerosis.Ā
(I cannot possibly express how genuinely glad I am that my neurology office did not miss the opportunity to deliver this news on Halloweenātruly perfect timing)
Today, I have constant pins and needles in my entire left arm and hand. I have constant pain and weakness in my left shoulder. I have lingering fatigue, particularly following long and busy days. I have adapted, however, and I am not afraid.Ā
The past few months have not been easy, but I am, very genuinely, okay.
Over the last month or so Iāve been working on gratitude meditations and the feeling I have most right now is not fear or anger or sadness but thankfulness. This wouldāve been impossible without the support of my friends and family. My mom has physically and emotionally carried me through the rounds of appointments and testing and results. Iām grateful for all the support I have gotten, Iām grateful for providers I trust. Iām grateful that Iāve had access to the necessary testing and treatment. Iām grateful that Iāve had 10 years of therapy to develop the tools Iāve relied upon to approach this experience in a rational and mentally healthy way. Iām grateful that my symptoms are no longer a mystery. Iām thankful that Iāve been diagnosed with a disease that is very well-researched. Iām thankful that my lingering symptoms feel manageable. Iām thankful that I can work, for a job I love, and for employers who are flexible, supportive, and understanding. Iām grateful for a partner who is patient and understanding, who offers me critical reassurance, who seems to be a sponge for all of my emotional reactivity and fear, who has offered me so much comfortable normal in the midst of so much chaos, who has not run away.Ā
In early July, out of nowhere, Bastilleās āPompeiiā got stuck in my head. Over the next few weeks, I embraced it as a bit of a battle hymn. Iām not sure why this song fell into that role for me⦠itās not particularly optimistic as far as music or lyrics are concerned but I used it that way anyway. I listened to it often, I cried through it, I used it to carry me forward.Ā
At the beginning of October, I was given a remarkable gift. I hadnāt talked about the Bastille song with anyone, but most folks who know me well, know how much of an emotional connection I have to music. Without any prior knowledge or prompting, a dear friend sent me a *new* version of āPompeiiā recorded by the vocalist from Bastille and arranged by Hans Zimmer.Ā
I donāt know what I expected when I first opened the link, but āPompeii MMXXIIIā far exceeded my grandest visions.Ā
During one of the hardest chapters of my life, Hans Zimmer and Bastille gave me my battle hymn. This song somehow captures all of what Iāve felt as I navigated my symptoms, testing, and diagnosis. Zimmer turned a simple song into a triumphant promise, and I will never be able to express my gratitude that this song came into existence when it did.Ā
If you havenāt listened to any of the others, please listen to this.
The tone of this story is different from a lot of my posts because I struggle with including my normal self-deprecating humor when talking about something this serious. I want to be sure to say, though, that the past 5 months have included a lot of laughter and a lot of joy. And, moving forward, I can absolutely promise that my self-deprecating humor will be in full force as well.Ā
All through July, despite my symptoms, I was able to do work I really enjoyed assisting with an event planning business. I loved the work, my coworkers, and bosses, and Iām hoping to do more of this work in future summers.
In August I got time with my parents in one of my favorite places. Even if it didnāt look the way it has in the past, I was still able to do most of the things I wanted to do. And I found joy.Ā
In August I got a glorious, magical weekend with my friends and their babies. I got time in the sun and good food and laughter. I got to hold two of the most incredible creations Iāve ever seen. I got to be Aunt V. And I found joy.Ā
In August I got a series of new tattoos for the first time in almost a year. I got one for a favorite musician, one for a favorite comfort film, and one for a new favorite filmāoffering a beautiful reminder to be present. Here, I found joy too.Ā
This summer I fell in love with the show Steven Universe, watching it for the first time with my partner. The simple, heart-warming messages this show brought me helped me smile even when it felt impossible. We also watched all of What We Do in the Shadows⦠which brought me a very different kind of joy.Ā
In September I started designing my calendar for 2024. I love calendars. The organization, the future-oriented thinkingāI just love them. I always design my own wall calendars. In the past Iāve done my favorite films, Van Gogh paintings, photos of family and friends⦠and I always leave space to add quotes. For 2024, I designed digital art for each of my favorite tv shows. Itās cute and I love it and doing something creative for the first time since I developed symptoms was very hopeful. And joyful.Ā
In September I returned to my primary job. I told my coworkers about what I was dealing with and I was reassured by their gentle support. I proved to myself that I can do my job and do it well despite the changes to my brain and body. I am learning my limits. I find joy listening to audiobooks and decompressing during my commute, in time with my coworkers, and in the job itself.Ā
In September I navigated mom and I through a plumbing emergency. I was able to address the issue, get the necessary help, and facilitate a resolution in a timely manner at a busy time. My capacity to rise to this challenge and problem-solve under pressure brought me joy.Ā
In September I baked. I reveled in returning to an activity I am still good at. Trusting my body to recall these skills and maintain the stamina needed to complete the task up to my own expectations brought me relief and joy.Ā
In September I watched a lot of football in my comfy clothes on the couch with my cat and my mom. There is no place Iād rather be. Being present and basking in the comfort of these things brought me joy.Ā
In October I got my hair cut and colored. Having a pop of something vivid helps me feel more like myself again. This brings me joy.Ā
In October I did my Christmas shopping. Getting gifts for people is one of my favorite things to do. Though my budget is a little sad this year and my holiday season wonāt look the way it has before, I am so grateful that I have had the opportunity to shop for the people I love most. I still have some shopping to do. This has and absolutely will continue to bring me joy.Ā
In October I watched the leaves change. Autumn is my favorite season and while I could always use more crisp sunny days with a light breeze, I made sure to soak up every moment of that that I got this year. I put on cozy clothes and got out warm blankets and loved the colors and the smells of my favorite time of year. This brought me joy.Ā
In October I purchased an entire wardrobeās worth of micro-fleece lounge clothes with Grinch prints and patterns in preparation for my appropriately themed holiday season. It will be hard to measure the joy I find in having and wearing soft, fully matching Grinch outfits day after day when December rolls around.Ā
In November I will get more football time, more friend time, more family time. Iāll get to celebrate Christmas early with a tree and decorations and good food and gift exchanges. Iāll get to start a new medication to help with pain management and fatigue. Iāll get to do more of a job I love and listen to more excellent audiobooks. Iāll get the gift of processing my new diagnosis surrounded by love and comfort and safety and security. Iāll get more date nights with more Steven Universe, though we only have the movie and epilogue series left. Then weāll move on to Fionna and Cake, Big Mouth, and our annual rewatch of the Lord of the Rings Extended Editionsāwhich I think may be particularly special for me this year.Ā
In all of the months since I developed symptoms Iāve read books Iāve adored and listened to music that has kept my heart beating. Iāve spent golden, precious time with some of my favorite people. Iāve impressed myself with my capacity to be patient and present. Iāve found joy absolutely everywhere.Ā
I have had really hard days and I have lived through a lot of fearābut as unfamiliar as my symptoms have been, fear⦠well, fear is familiar. And thatās something Iām grateful for too. I know there will still be things that make me afraid⦠new providers, new medications, new treatments, new symptoms⦠there will be new challenges and for as long as Iām alive, I expect ānewā will be scary. But Iām also confident. Iām confident that I can face that fear. I will keep being present, I will keep relying on my support, I will keep basking in gratitude, and I will keep finding joy.Ā
I have MS, but Iām still me. And Iām really grateful for that too.Ā