#ms diagnosis

[theritualofourexistence]

MMXXIII

Story time. 

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 I’ve included. Before we begin, I am safe, I am supported, and I am not seeking any sympathy—I 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. “Colorblind” has never been on my list of favorites but by the first chorus I had tears streaming down my cheeks. 

“I am ready, I am ready, I am ready, I am fine.” 

Symptoms

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 warm—but only under my right foot. I checked with my hands—no heat. I’ve 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. 

On June 28th I went to see a rheumatologist for a thorough evaluation. I had been worked up previously and given the old “something is happening, but we’re not sure what” response. The exam went well; I talked about my daily pain and occasional inflammation. I liked the doctor. I was reassured that it’s unlikely that my symptoms indicate a significant rheumatological problem. 

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. I’ve experienced similar things before, typically with hip or back pain. I’m paying attention but I’m 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 don’t 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 body—navigating stairs is a challenge and I’m unable to lift my left arm above my chest. I’m walking with a pronounced limp. Due to the twitching and jumping on my left side, sleep does not come easily. 

It's been a week, it’s time to see a doctor. 

First Appointment 

Though I wasn’t 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 didn’t feel particularly listened to and I wasn’t 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.

Symptoms 2

During the days following my July 6th appointment, I developed right-sided facial palsy. 

I am worried.

I cannot raise my eyebrow, I cannot squint, I cannot smile. I no longer feel like me. 

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.

Second Appointment

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 experience—I 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. 

Symptoms 3

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. I’ve 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. 

The only time I feel normal is when I’m driving my car. 

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. 

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. 

Results

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 doctor’s office for very specific referrals, I am able to schedule an appointment with a neurologist in a cancellation spot for September 7th. 

Third Appointment

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. 

Neurology

By the time my neurology appointment rolls around, I’ve gotten very accustomed to dealing with my lingering symptoms. I am able to work part-time. I’ve made necessary accommodations for the changes in my body. 

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.

Results 2

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. 

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.

Final Chapter (for now)

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. 

On October 31st I was diagnosed with multiple sclerosis. 

(I cannot possibly express how genuinely glad I am that my neurology office did not miss the opportunity to deliver this news on Halloween—truly 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. 

--------

The past few months have not been easy, but I am, very genuinely, okay.

Over the last month or so I’ve been working on gratitude meditations and the feeling I have most right now is not fear or anger or sadness but thankfulness. This would’ve 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. I’m grateful for all the support I have gotten, I’m grateful for providers I trust. I’m grateful that I’ve had access to the necessary testing and treatment. I’m grateful that I’ve had 10 years of therapy to develop the tools I’ve relied upon to approach this experience in a rational and mentally healthy way. I’m grateful that my symptoms are no longer a mystery. I’m thankful that I’ve been diagnosed with a disease that is very well-researched. I’m thankful that my lingering symptoms feel manageable. I’m thankful that I can work, for a job I love, and for employers who are flexible, supportive, and understanding. I’m 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. 

In early July, out of nowhere, Bastille’s “Pompeii” got stuck in my head. Over the next few weeks, I embraced it as a bit of a battle hymn. I’m not sure why this song fell into that role for me… it’s 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. 

At the beginning of October, I was given a remarkable gift. I hadn’t 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 “Pompeii” recorded by the vocalist from Bastille and arranged by Hans Zimmer. 

I don’t know what I expected when I first opened the link, but “Pompeii MMXXIII” far exceeded my grandest visions. 

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 I’ve 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. 

If you haven’t 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. 

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 I’m 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 didn’t 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. 

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 I’ve ever seen. I got to be Aunt V. And I found joy. 

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 film—offering a beautiful reminder to be present. Here, I found joy too. 

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. 

In September I started designing my calendar for 2024. I love calendars. The organization, the future-oriented thinking—I just love them. I always design my own wall calendars. In the past I’ve 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. It’s cute and I love it and doing something creative for the first time since I developed symptoms was very hopeful. And joyful. 

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. 

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. 

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. 

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 I’d rather be. Being present and basking in the comfort of these things brought me joy. 

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. 

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 won’t 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. 

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. 

In October I purchased an entire wardrobe’s 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. 

In November I will get more football time, more friend time, more family time. I’ll get to celebrate Christmas early with a tree and decorations and good food and gift exchanges. I’ll get to start a new medication to help with pain management and fatigue. I’ll get to do more of a job I love and listen to more excellent audiobooks. I’ll get the gift of processing my new diagnosis surrounded by love and comfort and safety and security. I’ll get more date nights with more Steven Universe, though we only have the movie and epilogue series left. Then we’ll move on to Fionna and Cake, Big Mouth, and our annual rewatch of the Lord of the Rings Extended Editions—which I think may be particularly special for me this year. 

In all of the months since I developed symptoms I’ve read books I’ve adored and listened to music that has kept my heart beating. I’ve spent golden, precious time with some of my favorite people. I’ve impressed myself with my capacity to be patient and present. I’ve found joy absolutely everywhere. 

I have had really hard days and I have lived through a lot of fear—but as unfamiliar as my symptoms have been, fear… well, fear is familiar. And that’s something I’m 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 I’m alive, I expect “new” will be scary. But I’m also confident. I’m 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. 

I have MS, but I’m still me. And I’m really grateful for that too. 

[melodymorningdew]

I cannot fight for my health and fight the world at the same f**king time.

[drferox]

My MS Diagnosis

So I’m approaching the 2 year mark since my Multiple Sclerosis diagnosis and I thought I’d better document how I got here, because being the patient is a weird experience, especially for a condition that had kind of vague symptoms that needed a fair amount of work up.

My symptoms actually started in early 2020, when I was in the third trimester of pregnancy. The main symptom was mistaken for carpal tunnel syndrome - numbness in my fingers that would progress to increasingly violent pins & needles sensations, that would progress to burning if I tried to push through it. Only this sensation would extend all the way up to my shoulders at times. I stopped performing surgery, because not only was I unsatisfied with my lack of sensation to know what I was doing with my tissue handling, but the pain would get worse quickly in constrictive surgical gloves in the presence of patient warming. So I stopped performing surgery in late pregnancy and was told it would get better a few months after giving birth.

It did not.

So six months after giving birth, finding myself able to use my hands for short periods but still unable to perform surgery to my standard, I went back to complain to the doctor. I also couldn’t play video games properly, my arms would often be numb when I woke up, all the way up to my shoulder, and they were super temperature sensitive. Even hot water from washing dishes would set them off.

They sent me down a carpal tunnel work up - ultrasounds and talking to a neurologist. The short version is they did tell me I had mild carpal tunnel… on one side only.

Which did not make any damn sense considering I had symptoms on both sides all the way up to my shoulder.

The worst neurologist in the world could not explain to me why a mild problem on one wrist was affecting sensation all the way up to the opposite shoulder, and just said ‘it happens sometimes’. Now, I like to think I have a solid understanding of the basics of how a body works, and was really unsatisfied with this answer. They recommended I talk to a surgeon, since I’d already been doing a bunch of physiotherapy, but I decided not to. Surgery could have put my hand in a cast for up to 6 weeks, I had a 6 month old baby to care for at home and a partner who was useless at best, and abusive at worst. I could not afford the time in a cast.

So I went to try something else, visiting an osteopath to see what they could do about my ‘mild’ carpal tunnel, and while I’m there, these headaches I’ve been getting.

She spent a good long while stretching out different muscle groups, and found that certain neck muscle stretches changed the sensations I was getting in my fingertips. So whatever was causing the hand problem was coming from somewhere in the neck, and she recommended I get a CT scan.

Went back to my doctor to get a referral for a CT scan, and explained what was going on. He thought about it for a minute, didn’t voice his concerns, and upgraded it to a neck MRI.

That MRI found a demyelinating lesion in my neck. So went back for a full Central Nervous System scan and found a couple more borderline ones.

That sent me back to a (different) neurologist, had a proper neurological exam that found a few random patches of altered skin sensation in addition to the arm weirdness I had going on. So I was probably a MS case, but not particularly severe as MS goes.

To confirm it I needed a lumbar puncture to look for oligoclonal bands in by CSF. The lumbar puncture was a moderately unpleasant experience which then mandated that I remain lying down for 24 hours so that my spinal fluid didn’t spring a leak. With a baby and a distinctly unhelpful partner, I barely made it to that 24 hours.

And then… I sprung a CSF leak. Which is a jolly weird experience I can tell you.

When your CSF leaks from a lumbar puncture you will feel perfectly fine… when you are lying flat on your back, because your spine flops over the hole and plugs the leak. If you’re upright at all the spine flops away from the hole and it slowly leaks out, and you get more of this weird frontal headache that gets worse the longer you’re upright, standing there talking to the ER admissions nurse. And the info I had explained that it can progress to seizures and similar the worse it gets, but I only got as far as pain and fuzzy vision. I seriously could only be upright for ten minutes without pain, and had to lie down to resolve it.

That required some medicine-that-looks-like-magic to fix, called a blood patch. Doctors took some of my blood, fresh out of the vein, and inserted it into my spine approximately where the leak should be, so that the clot would cover the leaky patch. Self blood magic. It worked brilliantly, about an hour later.

The CSF tap ordeal confirmed the presence of the oligoclonal bands, and then I got stunted into the public health system, in a department specifically geared towards managing Multiple Sclerosis patients. They debated for a little while, at a multidisciplinary meeting, whether I was really MS or a Clinically Isolated Syndrome (which is like Multiple Sclerosis but without the ‘Multiple’ part), but settled on MS. Yes, Tumblr, I was nearly diagnosed with CIS.

The shoe thing took about a year from when I actively complained to doctors, or about 18 months from the first probable symptoms. That’s approximate because some things that were thought to be pregnancy symptoms could have been due to MS, like fatigue and leg weakness. I’m pretty lucky that I’m comfortable in hospitals and with medical procedures, am reasonably medically literate. I think the magic phrase that got things to happen quickly was ‘these symptoms are greatly affecting my ability to do my job’.

I don’t think my MS has progressed since starting the medication (and I’ll talk about the medication in another post). I’ve acquired one additional brain lesion since diagnosis, but I have no clue what physical symptom it’s associated with.

While some symptoms are better, I still cannot perform surgery to the standard or with the endurance that I used to,so I basically don’t any more. I can do about ten minutes, which is enough to bail a new graduate vet out of trouble, but not enough to take over completely for them. I’ve had a few years to think about it but I don’t know what the MS is going to do to my career, only that I can still practice for now.

It’s not great, but it could be a whole lot worse, and that’s how I got here.

[radiotrophicfungi]

by the way, are there any disability-specific blinkies anyone would particularly like to see? my inbox is probably going to remain closed for the sake of my own sanity, but you can always drop a reply down below. :-)

[paradoxgavel]

i think, before my dad takes my mom to her doctor's appointment today, i'm going to maybe talk to him about asking the doctor about multiple sclerosis. it's really the best explanation i've got for what's going on with her, and if nothing else, it'd at least be nice to rule that out.

[bibuckbuckley]

Oh and I'm now officially diagnosed with fibromyalgia

[indigosabyss]

the urge to give kamala whatever mental problems i have

[rhysintherain]

For a show about diagnostic medicine, House does shockingly little actual diagnosis.

"Start him on antibiotics." Have you seen a bacteria? No? That's because apparently nobody on your team knows how to grow a culture or run a gram stain.

"It's probably cancer, start him on radiation." Without finding the cancer?? Without knowing what it is so you can decide on a treatment plan??

Very funny that actual diagnosis is too boring for House, so he just throws treatments at people until it almost kills them and demonstrates what the problem isn't.

[wlwsuperheroine]

You guys I’m literally kamala khan. This is no joke. I’m literally her in a different dimension where superpowers aren’t real and I’m 100% serious. You guys you gotta believe me.

[baejax-the-great]

My sister might not have brain cancer

[pleaseshootthejester]

Very few people irl know I've got MS cus I've noticed how differently I get treated when I tell people so I stopped telling people, only two family members and one friend know

And that was fine when my symptoms were like, numbness and blurry vision, maybe a slight weakness in one leg occasionally

But now I have an awful tremor and I can't hold things cus my grip is gone, I can't walk in a straight line and I fall over often, when I do walk "normally" I don't cus muscle weakness has given me a very noticeable limp, I no longer remember anything and I'm regularly in so much pain I can't go out

And I feel awful cus friends who I'm very close to are worried n I know have to admit "yeah I've not been truthful with you, you don't actually know me like you think you do, surprise :)))))" like FUCK

[theritualofourexistence]

03/03/24

March 3, 2024

After my first post detailing my journey to a diagnosis in 2023, I got an immense amount of positive feedback. Many of you reached out to thank me for my vulnerability, to call me brave, to share positive and uplifting stories of those you know who are also navigating MS. That validation is part of why I write and share my experiences but that kind of feedback is also just the hallmark of a good, supportive community–and I am so, so thankful for you, my community.

As the positive responses rolled in, however, my lizard brain started to do lizard brain things.

It’s sometimes really hard to share these stories in a way that is both honest and optimistic. I often wait to write things out until I’ve done a lot of processing and regained some stability–only after taking the time to do that can I usually spin things in a positive light. All the delightful responses to my first post made me wonder if I was really being honest enough. Obviously you, dear reader, are a part of my support community, but the majority of my friends and family who are traveling this road with me are spared the nitty gritty. Maybe three of you have been exposed to my darkest thoughts and only two of you have watched the panic attacks in real time. Only one of you has witnessed the rounds of dry (and wet) heaving–sorry, mom. Over the past few weeks in particular, I’ve wondered whether or not I left out too much of the struggle when I wrote my first chronicle.

I very much wrote my last update from a place of gratitude, and while I often still feel gratitude very strongly, looking back on my journey from symptoms to diagnosis to treatment plan with optimism was a privilege. A privilege that, for the moment at least, I feel like I’ve lost.

I write to you know from a place where I have been able to do less processing and a place that is, admittedly, not real positive. But if I want to be honest, which I do, it seems appropriate to share from this place too.

After my diagnosis of multiple sclerosis on Halloween 2023, I started pursuing access to a treatment for this disease called Ocrevus which is widely heralded as one of the most effective (read: “best”) treatments to manage this disease. I had to battle my insurance but managed to win my appeal and eventually got my first infusion scheduled for February 16th. A blessing I am retrospectively immensely grateful for is how much time I had to research Ocrevus, to ask questions, and to wrap my head around what this treatment would look like and mean. Not to spoil the trajectory of this update, but something I regret pretty deeply is how many of my eggs I put in the Ocrevus basket and how little energy I spent on having a back-up plan. Some of this was intentional–I know believing in a positive outcome is more likely to lead to a positive outcome… and I worked hard to believe in the Ocrevus. To believe my body could tolerate the medication and to believe that it would be an effective way to manage my disease long term.

If you know me, you know I’m anxious. I was anxious about this treatment, even though I successfully put a lot of energy into trusting and expecting a positive outcome. Ocrevus is a twice-yearly infusion with a loading dose split in half that you receive in two initial infusions two weeks apart. The infusions are long so I anticipated spending most of the day in the cancer center. I had a plan, I brought lunch and things to entertain myself. My mom took the day off to be with me. The staff at the cancer center were excellent. I had serious worries about getting the IV successfully and comfortably placed but that went more smoothly than I was expecting.

Every Ocrevus infusion is pre-treated with a steroid and benadryl to help prevent a serious reaction. I knew about the benadryl in advance but did not know about the steroid. In the past, my body hasn’t handled steroids particularly well. I pushed through this surprise and desperately clung to my hope that everything would go smoothly.

About half way into the infusion, I started experiencing a common response to the medication–itching in the back of my nose and throat. I was warned about this by the nurses and reassured that while the reaction is common, most people receive a second dose of benadryl and finish the infusion with no additional concerns. Knowing that I needed extra benadryl did cause my anxiety to spike so I took anxiety medication with that second helping of benadryl and waited for the reaction symptoms to pass. Sure enough, within an hour, I was able to continue and ultimately finish my first Ocrevus infusion.

The relief I felt when they disconnected the empty Ocrevus bag from my IV was blissful but short-lived. In the hour-long observation following the infusion, my heart rate and blood pressure began to climb. I was experiencing some chest tightness (a symptom that often accompanies my anxiety) and if you’ve ever been around medical professionals, you know saying something like, “I’m noticing some tightness in my chest” is a sure-fire shortcut to the emergency room. Which is where I found myself at 4:30pm on February 16th.

Now, when I say my body has not tolerated steroids well in the past, elevated heart rate is one of the things I have noticed before. I am still suspicious that what I experienced that Friday was a reaction to the steroid paired with anxiety, though elevated heart rate is a recorded symptom of an infusion reaction and I understand the necessity of being safe instead of sorry. There is no way to know exactly what my body didn’t tolerate well that day but being told I was being moved from the Cancer Center to the ER certainly didn’t help my heart rate or my blood pressure.

We were fortunately able to secure a space for me ahead of time so that I could avoid the ER waiting room. That space was in the behavioral health unit but hey, I’m familiar with that wing and have no complaints. My first round of testing included an EKG and blood work which were fortunately normal. An elevated d-dimer led to some additional excitement in the form of an urgent chest CT but that came back normal too. I was given more medication for anxiety and took my own blood pressure medication and eventually things started trending in a healthier and more comfortable direction.

My heart hammered in my chest at 135 bpm until about 8:30pm. When all the results of my tests came back normal and my heart rate finally started to dip back into the 115-120 range, I was discharged home.

During the chaos of the ER trip, I didn’t really stop to think about what my reaction to the Ocrevus would mean for my treatment. Those thoughts came blasting into my awareness like gunfire pretty quickly after getting home.

Would I be allowed to continue the Ocvreus?

If not, what the fuck was I supposed to do next?

Scariest of all was the sudden, nauseating uncertainty about tolerating other treatments. What if my inability to tolerate the Ocrevus means I am no longer a candidate for any of the high efficacy treatments for MS?

I left the Cancer Center knowing my neurologist had put my second infusion on hold. I believed for a time that maybe I could convince him it was just the steroid and get the second infusion anyway.

The Saturday and Sunday after my infusion were two of the hardest days I have had since I first considered potentially winding up with an MS diagnosis all the way back in July of 2023. In fact, that Saturday and Sunday were two of the hardest days I have had in a very, very long time. Every moment was haunted by the fear that I would be unable to find a medication that would adequately manage my disease. Every time I closed my eyes I pictured my life unfolding as one sad slump towards permanent disability and death. Until Friday, February 16th, I felt like I had good options to control this disease and I felt confident that control was possible. Suddenly having to swallow a far less certain future was not something I handled particularly well. While I’d love to blame some of the darkness and drama on the steroid, I don’t know that that’s fair. I was deeply hopeless. More than once I wished my heart had just exploded in my chest in the ER so that I wouldn’t have to face the impossible decisions coming towards me too fast to adequately weigh and consider.

On top of that darkness, my infusion experience also did some significant damage to my (admittedly fragile) relationship with my body. It was hard to walk away from the ER and not blame my body for having the response it did. For landing me in a place where I need this treatment in the first place.

The Monday after the infusion with some help from my saintly mother, I started to drag myself out of the Ocrevus hole. I forced myself to recite some affirmations. I wanted to choose things that had at least some element of truth so I could work on rebuilding my trust in my body while finding something to cling to as I pushed myself towards the next hurdle.

“I am grateful for my body.”

“I am impressed by my body.”

“My body fights. And I will fight for my body.”

In the two weeks following the infusion, my mental state has continued to even out. I catch myself wondering sometimes if there’s a limit to that… if there’s a place I can be pushed to where my brain and my body and my soul won’t figure out how to crawl back. Ultimately this time doesn’t seem to be that–and that’s something I am very grateful for.

The gratitude is creeping back. The optimism is stubbornly MIA.

I have a new treatment plan. Instead of choosing to push my providers to continue the Ocrevus, I’ve decided to listen to my body and pursue an alternate treatment. This medication (Gilenya, for those keeping track or working on a list for character name options for a new fantasy novel) comes with additional risks and potential side effects and I would be afraid of those things even if I had 6 months to research this medication. I’d be afraid because I was told the Ocrevus would work for me and I believed it would and it didn’t. So now I have to pivot (something I am royally bad at) and I have to prepare to expose my body to another medication that will disrupt a lot of my systems in an effort to control the disease actively dismantling my body from the inside out. I’ve asked some questions but there are a lot of questions I won’t have answers to until I swallow the first pill. That is not something I am good at tolerating.

My anxiety is my biggest challenge right now. I feel afraid almost all the time. I know the fear is sometimes rational and sometimes not–there are a lot of very rational things to worry about when you’re voluntarily suppressing your immune system during COVID and flu season. I feel the anxiety squeezing me almost all the time. I can still function and I can still find joy. But my anxiety is a constant and unyielding companion these days and man, is that exhausting. I don’t know if the Gilenya will work for me, I don’t know if my body will tolerate it. I will only know after I work up the courage to try and, if I find I need to pivot again, I have no idea how I will summon the energy to do that.

One thing at a time, though.

Having a plan helps. And this time around I have a back-up plan (or two) as well. But that doesn’t answer all the questions, it can’t, nothing can, and I have to figure out how to move forward without answers.

I have, however, moved forward without answers before. And although it is not comfortable, I know that I can do it again.

The songs I included in my first post were also very much the product of all the processing I had a chance to do. When I’m in these low places, it’s very hard to find things that consistently help me feel better. That Saturday and Sunday there wasn’t anything that helped me feel better. In the two weeks that followed, I honestly didn’t listen to much music. Over the past few days, though, I’ve found myself drawn to one song that I’ve included a link for here.

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"You Are the New Day"

I know that my brain offered me this song for a handful of specific reasons. Wildly, I chose to include my favorite lyric from this song on my calendar for this month only to find the same lyrics in my TimeHop the very next day–in a Facebook status from 14 years ago.

Fourteen years ago I stood on the precipice of the hardest thing I have ever survived. Before February of this year, I don’t think I would’ve hesitated to call my misadventures in 2010 the worst thing I’ve ever confronted and lived through. Thinking through it, I know that although February was hard and I won’t mince my words about it, it wasn’t harder than 2010. I survived 2010, and I will survive this too.

I’m still doing my affirmations. I’m preparing to start this new medication once the half-dose of Ocrevus clears my system. It would be hard to navigate a new MS diagnosis and treatment even if current global events had a kinder tone but I won’t lie–it’s especially hard to rebuild optimism on my own micro scale when I’m also constantly bombarded with macro-level heartbreak. I don’t have it in me to be hopeful or optimistic right now, but I’m still moving forward despite that. Every step forward brings me closer to a place where I can once again embrace hope as my philosophy, and, in the meantime, just surviving by finding comfort in the little things will be enough.

I’ll conclude this update with an important reminder from one of my favorite chefs, Jet Tila:

“You don’t always win, but you always have to try.”

[woodsy-hoe]

it’s funny bc the nurses say they could never do my job and vice versa; kinda glad i dropped out of nursing school tbh i love being a teacher so much more🤷🏻‍♀️

[adozentothedawn]

After 2 days of sitting around the hospital for 8 hours and sporadically doing a few tests they finally did the one test I went there for (a spinal tap). Tbh it wasn’t as bad as I was afraid of but damn I am really starting to feel my lower back. I am definitely not dealing with homework today. Hopefully it’ll be better tomorrow cause I still need to buy a christmas gift and I want to go to the christmas market and drink some punch.👀 Maybe get a new fancy hat. We’ll see, but I think I deserve to spoil myself a little.

[inkoducko]

My bones are attacking me. I have not been able to reach my hobbies. Because of this my bones are aching. It craves to work on my hobbies. School and lack of management keep me away from my hobbies and the bones in my body aren't happy because of it.

I need enrichment in my enclosure.

[pleasetakethis]

6, 14, 19 & 49 for the ask game? :) (if you're doing it)

Yesss! Thanks for your ask, May! :D Ask game in question, in case anyone else wants to play!

6. Optimist, pessimist, realist, surrealist

Optimist by necessity, surrealist when I eat psilocybin mushrooms. When I was diagnosed with Multiple Sclerosis at 29, my nurse's husband was also a nurse and he had MS. He was working in another ward but came and talked to me on his break. I avoided depression/mental health meds until then. He told me to look into how emotions affect our immune systems and that mental health meds were worth it if they helped prevent one single relapse. That conversation (and how I was diagnosed*) reframed how I looked at life. It could always be worse.

*at the first hospital, before being transferred, the neurologist told me I might have a brain infection or a tumor. At the better hospital, within 30 mins of being checked in the ER, they told me I had to wait for a neuro diagnosis but the ER radiology team was 99.9% sure it was MS. I went from thinking I might die and not see my kids grow up to realizing I had a life ahead of me, even if it was going to be difficult, and I will never forget that feeling of relief.

14. Are you a green thumb or do you kill your plant children

I TRY SO HARD, YALL, SO, SO HARD. I kill all my plant children. I am TRYING desperately to keep a tiny Norfolk Pine and a (mostly dead) pothos alive. Fingers crossed, just replanted both. I have an outdoor rose bush that has survived for several years now! I trim it back occasionally but right now it's a wild bramble with soft pink and hot pink blooms.

19. What is your least favorite color

I don't have one! I was going to say brown but then I thought about soil and tree bark and rocks and realized I dislike mud, not the color brown (plus brown and gold is a baller combo--looking at a painting project that has a brown and gold blended background and it's lovely).

49. Favorite urban legend

While I was born and raised in Lou, Ky, US until I was 11, I've spent most of my life in West Virginia, US, and I gotta go with the Mothman Legend. The statue is an hour and a half from me. My oldest has visited and left an offering of baked beans but I haven't--hoping to make it there this year with my other two kiddos!