Dec 21st, 2023 - Jan 5th, 2024
Thursday December 21st - Friday January 5th
Medical updates:
Mouth:
12/27 Oral Surgeon and Orthodontist: Positive report from Oral Surgeon, all looking good from his perspective. The Orthodontist was also happy though less enthusiastic I think because the ball is all in her court now and she has a lot of work to do. We adjusted my rubber bands again, see here, adding more bands to sleep with.
1/3 Orthodontist: She put in stronger arch wires both top and bottom, and added another rubber band for me to wear during the day.
My understanding of the biggest concerns / challenges and what the plan is are:
There’s a gap between two teeth on the top left side where I lost a tooth in the accident and she either has to close or try to create space for an implant. She’s not sure she can do either. We are waiting until I get an xray, likely 1/16, to see what the bone quality is like above the gap.
I have an underbite and cross bite. The stronger top arch wire should help bring the top left side in front of my bottom teeth. Rubber bands (see here) will hopefully help move teeth into proper alignment.
Nose breath smell and potential sinus infection has gotten a lot better finally. I’m still having a lot of dripping and drainage coming out of my nose (which I cannot feel), and some congestion but that’s all expected.
Pain is not horrible, though with a changing rubberband situation every week the pain increases and shifts after the adjustment and then when I’m finally getting used to it, I go back in and she changes it up again. I think it is also more painful because my upper jaw hasn’t fully healed so we are essentially pulling on unstable bones. It also creates muscle tension and headaches, and I’m having increased nerve pain which comes on as a surprise and goes away within ~30 seconds; this feels like a sharp/shooting pain, intense itching that can’t be scratched, or a burning sensation. I feel it on my cheekbones, around my nose, and on my upper lip. I’ve also started having strange hot/cold sensations where it feels like liquid that’s in my mouth is on the outside of my right cheek or dripping out of my right nostril. And I’m still completely numb on most of my face; numb on the outside, with deep fascia, muscle, and skeletal pain.
Still on a full no chew diet, so I have to swallow everything without chewing at all and I can use my tongue to break things up on the roof of my mouth. We’ve been able to start making more fun foods, like homemade saag paneer and butter chicken, pho (first blended up and now chopping up into small pieces), curries, and moist cakes.
Eye:
Light and reflection sensitivity continue to negatively impact my vision. I continue to do eye drops all day and ointment at night to combat dryness but nothing seems to help or improve the symptoms. I was told this is due to dry eyes and there's not much else I can do but wait. I haven’t tried night driving since 11/7 (wow I can’t believe it has been that long!) and feel ready to gain the independence back but am not sure my nervous system will approve. I think Patrick and I will experiment with driving a short distance in the next week and see how it goes. I’m eager to see the eye surgeon again in a couple of weeks.
I’m unhappy with the way my eyelid looks as you can still see much of the red inner rim of the lower eyelid; my eyes are drawn to it when I look in a mirror or see a photo. Quite dissymmetry, though I realize we are not symmetrical beings to start with. And I know I am my worst critic, I just expected it to look and feel different by now.
General:
12/21 restarted PT: I was frustrated to have to fill out all the same paperwork again, but understand they have a system they have to follow! We decided on a consult model rather than weekly appointments like we had been doing. The goal is to get me back in the shape I was in before these last two surgeries and progress from there. I’m starting back slowly from the same list of exercises I progressed with before, so I know what to do. The battle of being disheartened by working back up and the monotony of it all vs being proud/happy to be able to workout begins!
Win: I biked a whole 15 minutes which I haven’t been able to do since eye surgery! Not much but not nothing either 😊
Pain: As I exercise more, I’m having a lot of knee pain exacerbation on top of my frequent hip, back, rib, shoulder, and neck pain and instability. My face and head also hurt sometimes and I have to be careful of the positioning of my body.
12/29 Co Springs Face Surgeon check in via telemed: It was very nice to catch up with him! What an amazing guy. He basically just asked for an update about all injuries, surgeries, pain levels, etc. We’ll schedule another follow up in April-May to discuss next steps, if any, for scar treatments or other facial procedures to continue to improve my appearance.
I continue my weekly appointments with all Taos providers and remain full of gratitude for the amazing, supportive community of experts on my team!
One of my providers cautioned me that as the lawsuit moves forward and I’m forced to talk about what happened, I may experience a setback or an increase in pain. She has seen this with other patients and I was thankful she would raise the concern with me so I can pay attention and take care of myself. I already feel some of this with all the work we’ve been doing lately and am taking extra care to use the tools I have to help regulate and calm my nervous system.
General updates and happenings:
Over Christmas weekend, Patrick and I were planning to spend a couple of days in Albuquerque to see family. I decided to stay home and rest as I just wasn’t feeling up to it as we got closer. I was still having the nose breath smell, lots of blood/mucous/snot dripping from my nose, and very fatigued and in pain. It was a hard decision but I needed to rest/heal and not have more activity.I was missing everyone but also glad to be listening to my body.
Patrick and I have had so much going on since my jaw surgery. I had to submit more information to social security for my disability application (and still haven’t heard back!), the lawsuit really amped up and we are prepping to be deposed on the 11th in Taos, we have traveled to Albuquerque weekly, I’ve had more insurance stuff to work on (some of it actually very helpful and promising for 2024), my schedule keeps changing and I’m doing more even more care coordinating than before, and we celebrated two holidays. The more I rest I still don’t feel refreshed, but I think there’s just a lot going on right now and it will calm down. My nervous system is on high alert these days because things I need to handle keep unexpectedly popping up or taking longer than I expect.
Christmas and New Years were lovely, though also felt a lot like any other weekend day without obligations. It has been such a strange year and though we have a lot to be grateful for, I am worn down and feel like life is very out of my control. It is difficult to make plans in the present or future as I don’t know what will come up or what life will be like, I still can’t work and don’t know when I will have the capacity to, and it is isolating when your life is consumed by seemingly unrelatable things. I so love the opportunity for reflection that a new year brings. This year brought a lot of joy, community, healing, growth, and fun - though I hate to admit I feel envious seeing people’s social media reflections filled with fun, travel, and adventure that Patrick and I have and will continue for some time, to miss out on.
On the horizon:
1/11: Deposition in Taos
1/13: Celebration of Life for a dear friend in ABQ
TBD: Calvin and Silv come to visit!
1/16: Oral Surgeon and Orthodontist in ABQ
1/18: PCP check in (it’s been a year!) in Taos
1/23: Eye Surgeon in ABQ
I’m working on switching orthopedic care to Taos Orthopedic Institute and will follow up on Monday. I’m due for an arm follow up so hope to schedule that soon.
