Sunday, December 11, 2016

Updates and Christmas Tidings

Since my last post, not much has changed in terms of my health, but a lot has changed in terms of my perspective.

It turned from fall to winter out at the lake; we have officially and totally settled in to our new permanent home.

In October

And now, December

My vision has not improved overall, though I have had a few stretches of days where I thought it was much better, only to return to the original problems a few days later (blind spot in my visual field, extreme sensitivity to fluorescent lights, and color distortion). I've had the same experience with headaches.  About a month ago, I went 20 days in a row without a headache (yes, I keep track), and now they are back. Except for that glorious respite, I have had a headache every day for four months now, and I have to admit, it starts to beat you down after a while. Similarly, it's hard to not think about the vision problems when they are right if front of you for every waking minute.

I have seen a neurologist again, and I have a plan to rescan in February. At this time doctors will be looking for size of the lesion as well as any more evidence of MS. No one seems quite sure whether the headaches are related to the vision problems. My regular doctor tends to think it is still tension headaches based on the stress of this experience. I will see another ophthalmologist this week and I'm hoping for some new insight.

I vacillate between having the patience to ride this all out, feeling generally optimistic, and getting really mad and frustrated and wanting go demand that someone give me some answers. Any kind of chronic condition like this has a way to mess with your head. I can't remember what it feels like to not have a headache.

It is clear from all the conversations I've had with doctors and all the reading I've done that my condition is rare and atypical, so I don't neatly fall into any category and there is no easy explanation for my symptoms. Most cases of optic neuritis would've cleared up by now. And because my vision hasn't worsened over time, and because the lesion got smaller from the 1st scan to the 2nd, it is unlikely that I have a brain tumor. I would still really like to have some guarantees and I just have had to learn to live without them.

I had to stop waiting to feel 100% better before moving on with my life. I learned that I have a headache if I lie on the coach watching Netflix, and I have a headache if I go to the gym, so I might as well go to the gym. I'm back to working out at least 4 and mostly 5 times a week. It feels so good to gradually get some muscle tone back. I'm cooking and baking and I have all of my Christmas shopping done, and for the most part I feel like myself again. Me with a headache.

Right now I'm sitting in my living room watching the lake freeze (literally, you can watch patches of ice grow by the hour), and the sunlight is pouring all over my lap and the Christmas tree is all sparkly and full of our weird collection of handmade ornaments. Tim is off running errands and the kids are with their dad for a few more hours. I made granola this morning after going out in the 11 degree morning to run. I have had this whole day to do with as I please because I was so vigilant/obsessive about getting my Christmas shopping all done before December 1st (I mostly succeeded) and I am super thankful to be nowhere near a mall right now.

I am most certainly feeling incredibly grateful and lucky to be here during the Christmas season surrounded by my amazing friends and family. I am not exaggerating or being trite when I say that I'm thankful for every single day.  I'm thankful for every chance to girl talk with Skyler or watch Reed score points in his basketball game. I'm thankful for Hillary and Ellis and the tremendous love that has grown between us. I feel lucky every time I lean my head on Tim's shoulder or watch the little kids jump into his arms when he walks in from work.

I am loving my students and feeling like I have more to give them now than I did all fall.  I feel lucky to be here and able to shop for Christmas, to have energy to exercise and teach and live a productive life.

Here is what I'm not doing: I am not stressed or complaining about being busy. I am not getting worked up about making everything perfect for Christmas. I am not letting myself get overwhelmed by little stuff. I wish it didn't take such a scare for us to all realize this: we are all a phone call or a test result or a doctor's visit or an inattentive driver away from everything changing.

I wrote basically the same thing in my last post, but I'll say it again. Are you bogged down by busy schedules and long to-do lists?  Just remember you are here.  You are here with your families and not one other thing really matters, so stop. Hug your family.

Here are some highlights of our time since October.

We spent many fall weekends watching Ellis play football, one of my favorite things to do.
Cold days, warm hearts.
We spent a weekend in Portland with some of our very favorite people.Also, yes, Skyler got braces.

My brother Chris came from California to spend a week with us. We went hiking on the island.

Our love filled Thanksgiving
Our friend Matt turned 40, and because I look terrified in this picture, I'll include one more.

Not terrified! Just happy to be out with friends.

The biggest change from October to now has been that I'm willing and excited to make plans for our future. We are indeed all going to Puerto Rico after Christmas, and we have booked ski trips for February and March. With or without a headache, I'm going out there to keep on living.  

But for now, I'm just happy to be right here. 
Our home on the lake, Christmas tree in the window.

Merry Christmas, Happy December, and many, many thanks to all of the people who have shown their concern and sent love in so many forms.  



VLOG.i.y said...

Hi Emilie,

It's Kim Taras here (Jeffrey's wife!) -- feeling for your health struggle. I'm wondering if any doctor considered a tick-borne illness when diagnosing you?

I was diagnosed (by chance) with one two years ago -- b. miyamotoi and it's caused chronic headaches (weeks at a time), as well as eye and ear issues. I realize it may sound nuts, and I really don't want to plant any stressful seeds, but it's something that's common, often overlooked (and difficult to diagnose) and can cause all kinds of neurological issues.

A heartfelt good luck, with everything.