VERY LONG POST ALERT. YOU HAVE BEEN WARNED.
Three weeks ago today, I was in the emergency room with impaired motor skills on my right side.
Two weeks ago today, I had finally gotten a neurologist appointment set up…for February 18.
One week ago today, I had just come home from a three-day stay in the hospital.
And today, I’m finally writing a blog post about all this crazy.
I’ve been struggling to find my words about the whole experience, which is a pretty weird state in which to find myself. But considering the situation was pretty weird itself, I guess it makes sense.
So here’s the sitch:
Three weeks ago, I woke up feeling generally unsteady on my feet and later noticed that my handwriting was shaky. I went to the Samford health clinic, but the tests didn’t come up with anything.
The next day, my right arm and leg felt completely weak. You know those figurines that, when you push their base, the elastic goes slack and the figure collapses? My right side felt like that. So I went to the ER (major thanks to my friend Sarah for taking me) for more tests and a CT scan. The results were clear for all the life-threatening big baddies, but they referred me to a neurologist since weird symptoms like this can often indicate multiple sclerosis.
There was lots of crying going on that day, to say the least. I was set to go to Atlanta the next day to see Newsies with Megan, which we had been looking forward to since September, and I was terrified other symptoms would arise to prevent me from driving. My parents, who had driven to Birmingham once they heard I had gone to the ER, drove with/followed me to Atlanta the next morning to keep an eye on me (thanks again for that), and thankfully the ride both there and back was uneventful.
Also, Newsies was incredible. I am still not over it.
I spend the next week going back and forth between the hospital and the neurologist office trying to set an appointment. While I fully understand the necessity of information release forms and such, there really needs to be a online way to do it by now. Add to that the stress from my right side getting still weaker (and my handwriting becoming increasingly terrible), and it definitely falls under one of the most frustrating weeks of my life.
On Friday, the office finally called me with an appointment. But the earliest they could get me in was February 18, nearly three weeks out. I took the slot, but I began to cry as soon as I got off the phone. I had no desire to go through another three weeks of not knowing what was wrong with me and potentially losing sensation on my right side. My parents were equally as upset, but we didn’t really have much choice but to wait.
On Saturday night, my mom suggested that I talk to my pastor at church the next day and see if maybe someone in the church had any connection to the neurologist or if there was another neurologist in the church that I might be able to see earlier than the 18th. My mother, ladies and gentlemen, is a very smart woman.
Dr. Barnette immediately put me in contact with Dr. Kyle Hudgens, who called me Monday morning with an appointment for that morning. Seriously! I arrived at work at 9:00 to a voice mail that there was an appointment available at 11:30 if I could make it.
So many tears of joy, y’all. So, so many joyful tears. It was a true answer to prayer.
That appointment got the ball rolling, and quickly. I was sent to Trinity Medical Center directly after my appointment for a head and neck MRI and then told to go back to see Dr. Hudgens the next morning. My parents, who I have never appreciated more than I did during this whole ordeal, immediately came back into town to be with me to hear the results.
Annndddddd….*drumroll please*….tumefactive multiple sclerosis. That’s what the MRI (combined with my symptoms) seemed to 80% indicate, anyway. The other 20%ish would be be in the tumor camp, so the first thing was actually the good part of the news.
Yeah, so hearing that was…hard, to say the least. I tried to keep my composure as Dr. Hudgens informed me that I would need to be admitted to the hospital for three days for IV steroids and a lumbar puncture (yes, a spinal tap).
Could I be back at the hospital around 2? Yes. I’ll be terrified, but I’ll be there.
To my credit, I didn’t really start crying until we left the office. Not that I didn’t want to, but I’m not sure it had hit me quite yet.
I went through the next few hours in a fog. My parents and I went to my office to get any files I would need from my computer and to let my boss know what the situation was. We went back to the apartment to pack my suitcase, and I insisted on washing my hair since I didn’t know how much I’d be stuck in the hospital bed/if I’d feel like showering while there (this turned out to be my best idea). After my things were gathered, we went to Chick-fil-a to fill up on non-hospital food before making our way back to Trinity.
Various doctors and nurses came through my room in the next 3-4 hours, taking vitals and setting times for my procedures and steroid drips. I was dehydrated (because the whole “my right side is getting weaker by the day” thing was kind of stressing me out), so the IV catheter had to go in my hand (ouch) instead of my arm. And then a nurse comes by to take me for an X-ray, except wait! It’s actually the lumbar puncture! Time to get a large needle stuck in my back, hooray!
This was also the moment when my brother showed up, having driven all the way from Dahlonega to see me, so that’s pretty much when I fully broke down in tears. Thanks, Jay.
I am happy to report that the lumbar puncture did not actually hurt that much (props to localized anesthesia for being awesome), and I was back (and oddly giddy) in my room within an hour. Granted, I had to lay flat for the next 12 hours, but it was done!
Settling into my hospital room, I finally began to comprehend the vast outpouring of love and prayers that friends, family, and my church families were sending my way. That night, Sarah and EB came bearing a bag of goodies and prayers for healing, and Shea and Cameron came by on a spirit-lifting mission. The next day, between dealing with the beginnings of lumbar puncture headaches and starting on some light occupational therapy for my right side, I received a steady stream of Facebook messages and texts, as well as flower and candy deliveries. By that evening, I had been visited by two ministers from Brookwood and many more members of my Birmingham community, and a third Brookwood minister came to see me the next morning before I was discharged.
I don’t have enough words to fully express how much these visits, messages, and prayers meant to me, I truly don’t. I have never felt greater love and support than I did right then, and I am beyond grateful for the community the Lord has placed in my life here in Birmingham and for the families of faith that were backing my family and me in prayer across three states. Just…thank you. From the bottom of my heart, thank you so much.
We weren’t expecting to receive final word on the diagnosis before leaving the hospital, but a few minutes before I was discharged, we got a call in from Dr. Hudgens. Tumefactive MS was about as confirmed a diagnosis as 2015 medicine could give me. And while you never want to hear that you’ve got a lifetime autoimmune disorder, it was nice to know that a brain tumor had been ruled out. Ain’t nobody got time for a biopsy around here.
I’ll be honest, the next few days after returning home were rough. The lumbar puncture headaches were a nightmare, especially for someone like me who so rarely gets any headaches at all. We went out for lunch and a Target run on Friday, and I wound up crying on a bench in pain after two hours. No bueno.
I cannot say enough wonderful things about my parents during the events of last week. They let me break down every few hours, kept me well-hydrated and Tylenol-ed, stocked my fridge, and generally just were the best parents a girl could have during a time like that. I greatly appreciated my dad writing up short posts for his blog to keep everyone informed because I was doing a pretty terrible job at it.
On Saturday I sent them home. It wasn’t so much a positive decision as a necessary one; I knew that if I kept them here, I would keep wallowing in pain and not get started with my readjustment period, which all three of us knew I needed. So we cried, they left, and I went to take another nap (aka, the best way to avoid feeling a headache).
My friend Stephanie graciously spent the night at my apartment in case something went wrong, which thankfully nothing did, and though I couldn’t make it to church Sunday morning, I did at least manage to feel halfway normal (though still needing to lie down every couple of hours). Megan and Marshall drove in from Atlanta with a bag of goodies and Megan’s cat (because let’s face it, cats make everything better. No arguments to the contrary will be accepted). Chase also came over, so we ordered pizza and watched stand-up comedy on Netflix and caught up with each other’s lives and it was the best just feeling normal again after such a wacky week.
This past week has just been a period of getting back into life again. I’ve managed to be at work all week, and by Wednesday the lumbar puncture headaches were essentially gone (praise!). My right side mobility is back up to nearly 100%, I’d say, and my handwriting and typing is normal again. The only things I’m really dealing with now are the side effects from the steroid pills I’ll be on for another few days (insomnia and moodiness, mainly), but other than that everything seems to have righted itself.
And the cherry on top: I had a follow-up appointment Wednesday morning with Dr. Hudgens, where he told me that, due to my specific case, I will not be put on any long-term medication at this point. I will have check-up MRIs every so many months for the near future, but unless I present further symptoms or something comes up on one of the MRI images, I’m good to go (as long as I avoid hot tubs and saunas, which I’m totally fine to do).
It was the absolute best news I could have gotten, and I have praised God with every breath since. While there is still a 50/50 chance I will develop full-blown MS at some point in my life, there is also a chance I will never see another flare-up for the rest of my days. But for now, at least, this is an answer to our prayers.
Thank you again to everyone who has poured out their love, support, and prayers over my family and me during the last few weeks. I felt your love very keenly, and I am outrageously grateful for each of you. I have been blessed with so many different kinds of family in so many different places, and God knew I would need the strength of each one for this challenge. So thank you. Thank you so many, many times.
So that’s my last few weeks. Praise the Lord for his faithfulness and provision! I am sorry it took me so long to put all this together, but you know, I totally have a good excuse.
I love y’all. And thank you again, from the bottom of my heart.