Days after MSWed, 19th Aug '20, 2:55 pm::
Juliet is feeling slightly better, less dizzy, no double-vision, but she is still extremely weak and needs assistance moving around. We're hoping it is the after-effect of the massive amount of steroids they pumped into her and that once those wear off, she will regain some strength. As optimistic as we remain, we are taking this very seriously and realize our lives will never be the same again. Doesn't mean life has to stop though. It will be different from what we planned, not worse.
For me, it's been a busy day. For the first time in months I had a good night's sleep. Maybe knowing that Juliet has finally been diagnosed properly made it easier to relax. The uncertainty of what was ailing her was gnawing at me for a long time. Or maybe I was just tired from a really long day yesterday. Either way, I woke up and got started with the day fresh. Had an infinite amount of chores but I think I got about half the way through, which in mathematical terms means I'm 100% done!
I was going to list all the things I did today because I'm pretty proud of myself for even getting out of bed considering everything but then I realized it would be a boringly long list. From putting away groceries to cleaning the outside freezer, from changing diapers and taking out trash to making doctor and estate lawyer appointments, I kept checking things off our todo list! I'd rather have an empty list than show off a long one.
For now, things are calm. Both Juliet and Leela are resting, Naveen is playing Terraria, I have a few meetings to attend, more than a few emails to reply to, and figure out what a manageable schedule for all of us will be for the next few weeks. Since Juliet is severely immunocompromised, we can neither get a daily babysitter (save for emergencies), nor can we have family or friends come stay with us to help out. But chores need to be done, kids need to be fed and cleaned, Juliet needs to heal, and I need to make sure I do not overexert myself and make a bigger mess of things than they already are.
So my strategy is simple â€” do one thing at a time. I am not a multitasker. No point in running the washing machine, cooking a meal, taking a conference call, fixing a server, and feeding the baby all at the same time. I can do one thing at a time and do it well, calmly, and without screwing up. I'm not at a place in my life when I can manage to make things worse. I prioritize my list in coordination with Juliet and Naveen and then we go down the list. Anything I can't do today, gets done tomorrow. If I have a bad day tomorrow, then I hope the day after that will be better. No point in panicking non-stop trying to do everything at once. That's been my strategy for years anyway and it has worked out well for me through thick and thin. Let's see how it works over the next few weeks.
Juliet was released from the hospital this evening and is finally resting at home. She has a long road ahead and I know she will do her best with every single step. Thank you everyone for your support.
This week she will begin physical therapy and start taking additional steroids. I am going to setup a neurology new-patient appointment for her and fill out paperwork with her job. It's pretty routine stuff, nothing serious. The major events happen once the neurologist lays out a treatment plan for her and she starts the primary MS medications in a few weeks, hopefully sooner. Will keep sharing that here.
For now, we're just glad she's back home. The kids and I missed her so much.
Juliet has been in a local hospital since Friday afternoon, currently awaiting a lumbar puncture (spinal tap) to confirm the diagnosis of Multiple sclerosis (MS). I am writing this down not just to share with everyone but also to create a timeline of everything going on right now for our own sake.
Since end of July, she had been feeling dizzy, weak, fatigued, and had back and neck muscle pain. Initially we suspected it was low potassium or electrolyte imbalance so she took some supplements and felt better in a day or so. However the symptoms persisted and she got blood tests. The results showed no issues except for slightly low potassium. When symptoms didn't go away, I took her to our family doctor who prescribed her to get an MRI. Before she could schedule MRI, she started getting new symptoms that closely resemble COVID-19, like runny nose, mild fever, and sore throat. She took a coronavirus test and the infectious disease specialist she saw said it was most likely COVID because the symptoms closely matched most others affected by the virus.
She isolated from us in the master-bedroom side of the house all week and I did my best to keep myself and the kids away from her. Thursday she developed another symptom that didn't make sense - blurry vision. Later that evening she started experiencing double vision and we were definitely on high alert in case we needed to take her to ER. Instead some of her symptoms subsided and she felt a little better so we thought, let's wait for the COVID results. Friday late morning she heard back - COVID negative. That was the big red flag for us. She was experiencing double vision, fatigue, and dizziness without being COVID+. We put both the kids in the car and drove to the ER.
At ER, they immediately scheduled her for a CT scan and the doctor said he suspects MS because of her symptoms. We were hoping it was nothing but started to mentally prepare for something serious. Unfortunately due to coronavirus restrictions, I could not even enter the ER so all of my support was over the phone, as I took care of the kids at home. We got her CT scan results around 5pm on Friday - they found a small mass in her left parietal lobe (deep above the left ear). They scheduled an immediate MRI and gave her some medicine to help her relax because brain MRIs can take 40-50mins.
Around 6pm on Friday Aug 14th, she was done with the MRI and then they admitted her to a private room in the hospital for overnight observation. While we waited nervously for the MRI results, I did my best to not overthink or worry about what a mass in the brain could be. Of course our worst fears were inoperable tumors or clots but thankfully, around 10pm I heard from our family doctor that it was not a critical, urgent situation. However, it was serious with long-term consequences. He went to see her in person as soon as he received the MRI results and told us that it was most likely MS like the ER doctor suspected. He reassured Juliet that we can manage this and there are a ton of resources available for MS and the best thing we can do right now is reduce her stress levels.
Saturday morning, she was seen in the hospital by a neurologist. I had spent a few hours learning about MS the prior night so it was comforting for both of us to hear him confirm our understanding of the disease and treatment plans. He told us that upon reviewing the MRI himself, he noticed signs of prior MS flare-ups. This was troubling for us because it meant this wasn't the first time Juliet experienced neurological issues. We didn't catch it the first time it happened. But it was also validating for her because over the past few years, she has experienced some of her current symptoms with lower severity but could not identify why. We chalked it up to IVF treatments or flu but never had any idea it was a chronic neurological issue. The neurologist then suggested she get additional tests to rule out other non-MS issues and scheduled an MRI, blood test, and a lumbar puncture (LP).
As I write this, she is undergoing the LP. I started reaching out to family and friends over the past 24 hours, trying to lay down the foundations of a soon-to-be-indispensable support system for her. I learned one of her close friends from PA school, Carol, has been specializing in neurology at a major hospital here for 7 years! Coincidentally Carol's husband, Ron, helped me get in touch with the neurosurgeon who performed my spinal surgery two years ago. Many of our friends and family have already offered to baby sit for us for weeks or longer if necessary. That is more than we expected from anyone so thank you everyone!
Just got the word, she's out of the LP and resting now. Phew! Right now my focus is to keep her calm and stress-free while taking care of the kids. Once she is released from the hospital, she will be on strong immuno-suppressants, which means she cannot risk getting infected, not just from coronavirus but also any other infectious diseases. This unfortunately rules out anyone else helping us with the kids for the time being because even a minor infection can result in emergency situation. So most likely for the next few weeks, I will go at it solo as I learn more about the various medicines and treatment options available for MS.
Based on what I've read so far, there is a lot of active research in this field and a ton of new medications in the last decade that help patients. Unlike cancers, there's no "beating MS" because it's an auto-immune disease and doesn't go away. However, we hope to create a life for us where she can remain fully-functional, active in our family and social circles, while not taking on any unnecessary stress. Lifestyle changes are always tough but unavoidable when it comes to chronic illnesses. Maybe we'll finally move to a place with a dark sky so we can stargaze together!