Update

First, I'd like to thank SOOOO many people for reaching out to me/visiting me. Amazing! Heart warming! THANK YOU!

After some feedback from my residential editor (aka husband/Simon) that my last post ended "abruptly" coupled with people checking on me, I was trying not to wait too long to post an update (although it's been WAY longer than I planned).

I'm a Xiennial ( What is that? Click here ) and prior to all this, I was NOT good (and I'm still learning) at documenting life for social media purposes. Therefore, I have no pictures of me hooked up to the steroid infusion IV giving the "thumbs up" or anything like that. So apologies for text only here :-)

Day 2 of my steroid infusion, I was having to use a wheelchair. Yup, my worst nightmare.  

Day 3, I was getting worse. I was trying to stand for part of my infusion and I actually fell down because my legs gave out. I had emailed the neurology resident earlier in the morning because I was feeling worse. She called me while we were driving home from my infusion and told me to go to the ED. She wanted me to have a full neuro exam by the neurology team. We stopped home to grab some stuff (jic I had to stay at the hospital) then headed to the ED.

Funny story here (or at least it is to me), the neurology resident (and his attending) who saw me in the ED, agreed I was having a "flare" and recommended I be admitted overnight for physical therapy eval the following morning to determine if I needed rehab placement.......ummmmm what?

I'm not trying to be rude here but seriously. 

Yes. I couldn't feel much from the waist down. 

Yes. I had arrived in a wheelchair. 

However,
1. there were not other tests she wanted to order,
2. she didn't want to keep me for observation to see if things got worse in the next 12 hours.....

She literally admitted to us that she wanted me to stay in the hospital so a physical therapist could see me IN THE MORNING to evaluate if I needed to go to a rehab???? (apologies to all my PT friends....but come on)

I politely declined. Simon and I went on a sushi date.

Given that our house has a staircase of death (also read steep, carved/edged travertine stairs ALL over the place)  and both girls sleep downstairs, we thankfully stayed at Simon's parents house (one level). Which also meant, I got to use one of my father-in-laws BA canes (wish I had a picture to insert here). I chose the wooden fish. 

Day 4 waking up, I felt there was some more feeling in my buttocks and back of my thighs, however I noticed that as soon as I sat down (chair for meal, car ride to/from infusion, infusion, laying on my back) the "dead" feeling quickly returned.

From that day forward, I have avoided the things (sitting/laying on my back, bending over repeatedly) that make the numbness worse.

I started physical therapy the Monday after Labor Day week (talk about another humbling step....but have to start somewhere).

My mom (THANK GOD) decided to take some FMLA time off from work to help out. Literally saved our lives. I quickly found out that not being able to drive is a SERIOUS roadblock to pretty much everything. Although, grocery delivery and companies that cook meals for you are phenomenal.

Today (9/24) marks one month since I picked up Sasha and had the back pain.....

I'm still not driving (haven't tried, my family still doesn't think I'm safe 😏 )

I admit I have ataxia (added link for definition) but it's actually getting better being diligent with my therapy exercises.

My legs/feet continue to "feel numb". Maybe more "prickly" sensation now (which is more uncomfortable than the "dead" feeling). Who knows? I'm not 100% sure if things are getting better and/or I'm used to it at this point 😐 But, I'm of course planning to improve and get back to (most of) the things I was (and wasn't- riding my bike, racing, etc.) up to before.

More to come on this but (plug for event here), if you live in Phoenix (or don't) and you're free the morning of November 3rd 2018, I created a team (Fear NO Lesion) for Walk MS Phoenix 2018 (click for link to my team page).

Thanks again for everything! Will attempt to write (something more uplifting) soon!

Christina