Oct-Nov 2023
Saturday October 7th - Friday October 20th
General updates and happenings:
1 Year Surviving and Thriving Celebration Weekend (Oct 12-16)
The week leading up to the big 1 year celebration was full of preparations and excitement combined with nerves. Patrick and I did more cleaning, organizing, and purging in the house and yard than we have done since we moved in; it felt awesome and the house looks great!
Family started arriving on October 12th, with my mom, brother, and fiance staying at our house, and some of Patrick’s family and close friends at Hotel Luna Mystica.
Friday, Oct 13th, more friends and family started arriving and we hosted an open house with about 35 people. It was so much fun and wonderful to get some time with a smaller group before the big party. A group of old friends, a mix from middle school-college years, came and stayed next door; another group from Patrick’s neighborhood growing up was here; some of my mom’s good friends from Denver; all this in addition to our families. It was a big mix of our really important people coming together… kind of like practice for a wedding?! How fun that they will already have a connection because of this celebration. The connections among various groups of people only continued to grow over the weekend - so so yummy.
Saturday morning, October 14th, was the solar eclipse. It felt serendipitous for the eclipse — symbolizing new beginnings, transitions, and growth — to fall on this very special weekend. We went to Hotel Luna Mystica for eclipse viewing and breakfast burritos with most of the group who was at our open house the night before. A close friend made this video of the weekend, showing how beautiful it was to be at the hotel, and a little glimpse into the party that evening.
Between the eclipse and the evening celebration, Patrick and I snuck away for a little napcito before getting ready for the party. We had more friends arrive shortly before we needed to leave for party set up, it was nice to show them our house for the first time. We had so many guests that hadn’t seen our home before and it was lovely to share our space with people important to us. We even played musical beds a bit so that different guests could experience staying in our house and camper van.
The party started at 4pm on Saturday, we arrived at 3:30 for set up, and I was able to get in one volleyball game before too many people arrived. How fun for people to walk into the party and get to see me playing volleyball - I was proud and happy to start the evening off that way. Once I stopped playing, the night practically flew by with so many people to greet and chat with as much as I could - I felt pulled in a million different directions and just let myself go with the flow without expectations. The event flowed flawlessly in my opinion, no stress, people enjoyed themselves, the venue was perfect, and the band was just wonderful. What a night! I am still buzzing from all the love and celebration and hope I can hold onto this feeling, and even when I can’t, I know I can come back to it for a pick me up.
I have to give a huge thank you to our friend Ricky at Daleee KTAOS (if you came to the celebration, please help support their business and leave a review!) for hosting the event and his generosity to make it all happen. Also to Shane at Taos Canyon Cannabis for sponsoring the event and to Amanda for putting together decorations.
I was not expecting gifts during this celebration, and was surprised by the sweet and thoughtful gifts I received from many. I’m so grateful for the support and generosity that came in various ways. So much love.
Sunday we had a lot of people in and out of our home on their way out of town and a few friends and family still staying with us that day. After all the morning activity, we lounged the rest of the day and caught up on rest.
Monday, Oct 16th, was the actual 1 year accident-iversary and we woke up to say goodbye to my family, then went to breakfast with a couple of dear friends who were still in town. A lovely way to start the day! Patrick and I were thinking of going to Ojo Caliente and decided to stay home instead and just settle in our space, with all of our feelings from the weekend, and enjoy being home together. I was pleasantly surprised that the day didn’t come with heavy thoughts and feelings, it felt just like another day, perhaps partially due to all the excitement and visitors, and calm after the storm. I’m happy the days leading up were full of joy and celebration; it took the heaviness away.
I’ll share photos from the weekend when I have gathered them from everyone 😊
Medical updates:
Tuesday Oct 17th oral surgeon appointment: I got a call that morning that my oral surgeon was sick and needed to cancel the appointment. I was bummed at the same time that it was nice to have a day to just be and continue to settle with all the feelings from the wonderful weekend. I have so wanted to meet with the oral surgeon and understand his plan for my upcoming surgery, ask questions, and get on the same page. The office called back and asked that I come in for imaging with a tech, so we scheduled for Wednesday Oct 18th when I was going to see my eye surgeon.
Wednesday Oct 18th to ABQ for two appointments.
The first was to get imaging done for oral surgery prep. While there, I tried to get my cancelled appointment from the 17th rescheduled, but they need to talk to him in order to schedule so they couldn’t help me with that. I also tried to get my post surgery appointment scheduled and was informed that they typically see you at 7 or more days post surgery… 1 week out is the day before Thanksgiving, so they also need to talk to him about that. The waiting continues!
The second was my pre op appointment for eye surgery, scheduled for October 27th. The purpose was to go over the plan again, answer any questions, and sign consent forms for the surgery. The surgical plan is pretty straightforward: he will put a spacer graft in the middle eyelid layer (”lamella”) and a skin graft on the outer layer. To help keep the eyelid pulled up while healing, there will be a stitch in the lower lid that is taped to my forehead. This will need to stay in for 3 days and then I can remove it myself. I can expect to have swelling and bruising and will use ice to help alleviate these symptoms, as well as tylenol/codeine to help with pain. I can also expect for it to feel like there is an eyelash in my eye while the incision heals, and will have an ointment to use to help comfort the eye. I will have 1 week of minimal activity post surgery, I’ll be fine to drive as soon as I feel comfortable, and will follow-up with him on Nov 1. We won’t know the exact time of surgery until a few days before.
What’s next:
TBD Initial jaw surgery pre-op appointment with oral surgeon
10/24 Orthodontist to add braces wire hooks for surgery
10/27 Eyelid surgery
11/1 Eyelid surgery follow-up
11/14 Jaw surgery pre-op appointment with oral surgeon
11/15-16 Jaw reconstruction surgery with 1 night hospital stay
TBD Jaw surgery follow-up with oral surgeon
11/29 Jaw surgery follow-up with orthodontist
12/1 Arm surgery follow-up
Saturday October 21st - Saturday October 28th
Medical updates:
10/27 Eye Surgery: I’m home, feeling well rested and taken care of, and healing well so far 🙂
We had a check in time of 8:30am so decided to get up early and drive down and back in one day. It felt good to sleep in our own bed and was an easy and beautiful morning drive with a full moon. We got to town early enough to take the dogs for a walk at Hyder Park, in our old neighborhood, before checking in at the surgery center.
It was smooth going in and out of the general anesthesia, I remember waking up and the nurse saying something like, “woah, were you even out? you are so awake and normal!”
The surgeon told us to expect lots of swelling and bruising, discomfort like there is something inside the eye, and to use ice, tylenol/codeine, and an eye ointment to help. We are pleasantly surprised with the amount of swelling and bruising; it is much less than we expected. I am in some discomfort but it is all manageable; I’m even able to read! I’m making sure to keep up with meds every 6 hours and icing every hour or so.
Recovery for the next week: I have a stitch holding my lower eyelid up that is taped to my forehead which I can take out on Monday. I’ll continue using tylenol/codeine through Monday as needed. I’m to rest for 1 week with no strenuous activity but can begin driving again as soon as I’m off meds. Pretty easy!
Mouth/oral surgery prep:
10/24 Orthodontist: oral surgery prep appointment to add surgical hooks to my braces wires for the surgeons to grab during surgery. I no longer have bands around the brackets and a full metal mouth which is pretty irritating! My orthodontist made a joke about me auditioning for the new James Bond Jaws movie hehe
10/24 Oral surgeon: finally got in to see the oral surgeon for our pre-op appointment and were disappointed at the lack of information he had to share. They have my new scans and have requested the 3d planning meeting but it hasn’t happened yet. It was good to see him, make the connection, and ask some questions, though there is still much we don’t know for sure. What we did learn:
Surgery is November 13th like we originally thought
Pre-surgery appointment November 7th where we will go through the surgical plan
Recovery: I’ll wake up with a splint on top and bottom that’s kind of like a hockey mouthguard, the purpose is to stabilize my upper and lower jaws in and of themselves. I’ll have this for ~3 weeks. Then we’ll take the splint off and “wire” my jaw shut with strong rubber bands for a number of weeks.
He isn’t sure he can get the plates out that my original reconstructive surgeon was worried about. He will try and if it is too risky, he can work around them and they’ll stay in.
I may not have to stay overnight in the hospital as we were originally told, that will be a game time decision depending on how surgery goes. If for some reason we want me to stay, we can make that happen.
Sunday October 29th - Sunday November 5th
Medical updates:
Eye: Generally positive report from eye surgeon. Feeling on the up and up!
Recovery: Friday-Tuesday were pretty good days, I was exhausted, a bit swollen and bruised, and in need of rest but not in a lot of pain. I continued icing on and off, using the prescription eye gel, and taking medication to help with discomfort. I wore an eye patch on and off to protect my eye, and specifically the stitch holding my lower lid to my forehead. With Halloween approaching, I joked wiht my family that last year I was the bride of Chucky and this year I got to be a pirate, hehe. I removed the stitch on Monday (video available upon request). What a weird feeling! After that, I no longer felt the need to wear the eye patch. Bruising slightly increased into the week after removing the stitch.
Surgeon follow-up: Wednesday I drove to Albuquerque for my surgeon follow up appointment. He gave a positive report, is happy with how it is healing and that it closes all the way. The continued droop in the inside corner of the eye may be due to swelling or it could already be the scar tissue continuing to heal short and effectively pull the eyelid downward. My homework is to continue the scar massage I’ve been doing daily, essentially pulling the eyelid up and into the center. I’m hopeful it will look less and less droopy over time, and am happy sometimes when I look in the mirror and also continue to be drawn toward the droop and am saddened by it. He cleared me to begin slowly bending and lifting, gradually increasing activity as I feel able to. I’ll see him again in 2 months.
Continued recovery: Starting Wednesday evening, I had several days where my bones ached on the right side of my face, even into my teeth. Yuck! Staying out of the sun and putting ice on my eyes seemed to be the only thing that helped. Thankfully this ended on Saturday, with less of a headache. I continued to rest, trying not to overdo it the minute I started to feel better. Today, Sunday, I am still feeling better and even got back into a more standard workout.
Mouth
Surgery rescheduled: Tuesday I got a call from the surgery scheduler that my surgery date was moved again due to a scheduling conflict. My new date is November 27… at least it is still this month! I imagine this happened at least in part because my surgeon only does pediatric oral surgeries and took me as a special case, so he does not have standing operating room time in the adult surgery center. This change also means the appt where we’d find out more about what to expect during and after surgery have to be moved. Blah! So frustrating. I spent a lot of time on the phone moving around appointments, with more still to do. I also went through a whole host of emotions that day, during which I had moments where I was able to find the positives in the situation. It is good to have a longer break between going under general anesthesia, I will be able to eat food on Thanksgiving (even though I don’t enjoy celebrating about the holiday itself), I can ski on opening day. My therapist had a sweet take on it that maybe it is good because I get to take a break from being brave. The idea is nice but my nervous system doesn’t necessarily feel like it is taking a break (yet?).
Arm
My arm surgery 2nd follow up appointment keeps getting moved. It was originally scheduled for 11/10, then 12/1, and now 12/22. To me this sure highlights the short staffing, over-taxed, nature of UNM!
What’s next:
11/21: oral surgery pre-op
11/27: oral surgery
12/6: oral surgery post-op
TBD: 2-week post surgery orthodontist appt
General updates and happenings:
Pre-surgery fun: As I mentioned earlier, I’m working on finding the light in having the next surgery moved. Some of the fun things on the docket in the newly extended pre-surgery phase:
cooking yummy things! butter chicken on the menu tonight, shakshuka with fresh duck eggs, baking sweet treats
getting ready to ski opening day at Taos on Thanksgiving!
playing volleyball indoors in Angel Fire
yoga
more walks and hikes and yard work while the weather is holding
art projects
incorporating pre-ski season training into my workouts
Ojo Caliente
Income: I have yet to hear any updates from the state regarding my social security disability benefit application. At this point, I’m not optimistic about hearing this year and hope I will begin getting payments (and backpay!) in the new year… February will be 1 year since my application was submitted.
Learnings: I continue reflecting and writing about my experience and have posted a new update on the “learnings” page! Expect more in the coming weeks 💜
Monday November 6th - Friday November 24th
Medical updates:
Mouth:
11/21 pre-surgery appointment: The appointment was good, he seemed very confident and calm about the procedure and their planning meeting, and we have a big packet of info to review and bring any additional questions day of. The surgery will be 4-5 hours total and I will stay overnight.
Surgical plan: remove plates in the area of upper jaw, assess bone density and fibrous union (scar tissue instead of bone-bone healing), remove fibrous union, bone grafts, break upper jaw into 3 pieces, realign, insert splint. This is a high level of what is expected but there’s a lot they don’t know until they’re doing it, which also means we can’t fully know what to expect post-surgery until we are there.
What we can expect post-surgery: No chewing at all for 6 weeks. I’ll be very swollen and need to ice a lot, with a "jaw bra". No exercise for 2 weeks and then as tolerated. The rest we'll just know when we know!
Eye:
High level update: I’ve been experiencing some concerning vision changes since my eye surgery, with extreme sensitivity to light and reflections. I became especially concerned after driving at night for a pain injection specialist appointment on 11/7; I haven’t driven at night since. My symptoms continue today and I often have to close all the blinds in the house and turn off lights that are affecting my vision. There isn’t anything to do about this right now and hopefully with more healing time things will improve. My eyelid is also healing a bit turned outwards (inner eyelid is very visible), which hopefully will heal with time as well but may need another procedure.
Play by play: Read below for a summary of my information gathering.
Tuesday 11/7 I had an evening appointment with the pain injection specialist. It was my first time driving at night since the surgery and I noticed a scary and concerning change in my vision. My light sensitivity is extreme, with halos and trails coming off of cars from a far distance, as well as reflections from my own car lights on road signs. It is difficult to focus on the road. I had already noticed some increased light sensitivity inside the house, either with sun coming in from the windows or from indoor lights, and thought it might be part of the healing process. This nighttime experience made me feel differently, but I was still thinking of waiting to see if it would pass because I haven’t had an easy time communicating with my UNM providers.
I saw my chiropractor on Wednesday 11/8, and she was concerned and encouraged me to follow up with my surgeon. I felt both reassured and worried at the same time, reassured in being heard and believed by one provider, and worried because of my previous TBI healing experience trying to get answers about vision changes and essentially being gaslit about what I was experiencing. Here we go again, I thought.
On 11/8, I both left a message in my UNM portal and called the eye clinic. The person I spoke to took down the information related to my concern and said they would get back to me soon. By Friday 11/10, I hadn’t heard and with the weekend coming, I followed up again by phone. The first person I spoke to said it could simply be related to dry eyes and to continue using eye drops to keep my eyes moist; she wasn’t my surgeon’s tech and said they would be calling me back later with more info. Then I spoke with my surgeon’s tech and she again suggested it was dry eyes. This didn’t make sense to me, so I asked her to elaborate. She relayed my health history, that I have sjogren’s, that the accident caused scarring of my lower eyelid that wouldn’t allow my eye to close all the way until they fixed it in this surgery. I said thank you, I still am confused because 1) I have managed my sjogren’s for over 10 years, 2) before surgery, my surgeon said I wasn’t at risk of damage to my eyes due to excess dryness caused by the eyelid retraction, and 3) if the eyelid issue was just fixed, why would a vision change due to dryness show up now? She didn’t know. She suggested more dry eye care, which I am well aware of and doing already. She also said this sounds a bit like trauma-induced cataracts and had I been told that the accident caused this? I said no. She said I should hear from the surgeon early next week…
After still not hearing back from UNM, several of my Taos providers expressed continued concern about how my eyelid is healing and the vision changes. They were able to get me in with a Taos eye doctor on 11/15. She said that my vision is fine, but is concerned about how the eyelid looks (“severe ectropion eyelid”) and with the vision changes. She is sending me to another surgeon for second opinion on 12/12 in Albuquerque. Blah! Glad to have the support and people paying attention but also bummed at the continued saga.
As of 11/17, I had no follow up from UNM generally or from my surgeon specifically. It is very possible the surgeon never even got the message. Regardless of the reason, the lack of follow up is not ok and at the same time, I understand it is systemic and not likely due to individual people.
From 11/17-11/20, I had a lot more input to process after speaking with a family friend/specialist who works at UNM. They reached out to my eye surgeon and an eye doctor, showed them pictures, and both said it actually looks good from their perspectives. Hopefully it will continue to heal, and if it doesn’t he will do another surgery but it wouldn’t be for awhile anyway. The vision change is likely due to dry eyes so to keep up with eye drops and everything I’m already doing.
The variety of input from trusted sources that conflict with each other is hard to navigate. The whole situation is very frustrating at the same time that I am lucky to have people helping me get in touch and providing more input.
With the follow up situation post-eyelid surgery and remembering my post-arm surgery challenges, I can’t help but feel frustration with UNM quality of care. I also recognize that NM is a poor state and we don’t have the resources like Colorado in general, and Colorado Springs specifically. It is still quite a painful dichotomy of care that I’ve received and makes me mad, sad, and want to change the world all at the same time.
General updates and happenings:
Balancing wanting to do more socializing and fun before surgery, and wanting to rest and hermit at home. Feeling pretty good about my life and community as we head into the last few days before surgery.
I’ve been doing yoga weekly and so enjoying the community movement that gets me out of my head, in a flow, focused on my breath and my movement. Ahhhh.
No night driving and the time change is hard! I feel like a bit of my independence was taken away again. In a way, with having surgery coming up, its good timing since I won’t be driving anyway!
With the colder weather and wind, I’ve noticed more nerve pain in my face when my ears get cold. Good thing I like cozy wraps for my head and neck.
Disability Benefits: I finally got a call from social security, though was in an appointment and unable to answer. I’ve called back every day and despite having a person’s name and extension to call, have been unsuccessful. I’m sure the holiday is playing a role in this and hope to get ahold of them next week!
Thanksgiving: To start... I want to humbly acknowledge that I grow, live, work, and play on the unceded ancestral lands of the original peoples of the Apache, Cherokee, Diné, Očhéthi Šakówiŋ, Pueblo, and Ute past, present, and future. With gratitude, I pay respect to the land, the people and the communities that contribute to what today are known as the State of Colorado and State of New Mexico.
I have so much to be thankful for - I can't say it enough, I have such amazing support on this journey and am continuously grateful for that as well as this incredible body that wants to heal. I have crossed paths, (re)connected, deepened relationships, and been supported by a multitude of individuals in the 13+ months since my accident. I am also conscious of the immense number of privileges I hold that help me through this recovery. I’m able to acquire the things I need to help me heal – for example, I can access and afford to eat healthy food that accommodates the evolving needs of my body and mouth, I can (thanks you all of your support) continue to purchase the supplements, home PT equipment, never-ending supply of eye drops, etc. – I have high health literacy and am able to effectively coordinate/navigate my care in a dysfunctional system, I have a wonderful support community to bounce ideas off of, I have been given the gift of pro bono patient advocate partnership, I have connections that have enabled me to get in with the best medical care and attorney teams, among many other things. I can’t begin to imagine how someone without similar privileges would navigate this.
Patrick and I enjoyed spending Thanksgiving at home, just us with our animals, cooking yummy foods all day (breakfast burritos, croissants, crab legs, korean bbq pork shoulder), and just being together without any obligations. We haven’t had a winter holiday in our house since we closed two and a half years ago. What a whirlwind it has been! We certainly have a lot to be grateful for and feel it every day
