Feb-March 2023
Tuesday 2/7 - Tuesday 2/21
Being home: It is sure feeling amazing to be back in my own space, with Patrick, the pups, and the birds (chickens and ducks), the breathtaking views and solace of Taos living. I am not saying it has been easy, there have been a lot of adjustments and certainly am still figuring out the right rhythm here and leaning into what feels good. I’m allowing myself to sleep as much as I can (and still having some trouble with falling asleep, though CALM magnesium sleep gummmies, THC/CBN gummies, GABA, and other tools help). I've switched up my home PT to ~1.5 hours 4x/week instead of 5, and constantly evaluating and adjusting the mix of appointments and input I am getting which I imagine will continue to be in flux for some time. I have 4-6 weekly appointments with excellent providers and also feels like a lot of input - the system is so messy and does not allow for easy coordination between providers of different types at different practices, it is very complicated. I do my best to keep them all informed of what is happening with the others and try to get it all in sync; this, plus constant talking about how and what I am feeling, is exhausting, and also necessary.
Finding rhythm: There’s still the somewhat known pathway (continued PT and bodywork; regular check ins with surgeons, PCPs, pain specialists; and additional surgeries including right lower eyelid, left arm, and jaw), and the uncertainty of when exactly these additional surgeries will happen and what recovery will be needed makes it hard to plan — and I’m a planner! It is difficult for life in general and for work re-entry specifically. I continue to do a few hours/week for the New Mexico Human Services Department, am planning to being my grant writing contract work again with a flexible arrangement, and have a couple of other work ideas/discussions going. I am also looking into applying for short term disability and other assistance that might be available so that I don't have the stress of trying to work on top of the full time job of healing and dealing with the other accident aftermath (namely, insurance battles and lawsuit). Balancing all of the appointments, home exercises, scar care, supplements/medications, rest, desires to get back into regular home contributions (monetary and otherwise) is a challenge, though we are managing well. I feel a bit drained all the time dealing with all of this and also want to get back to more normalcy, including more regular socializing, and haven’t yet quite figured out how to balance it all. Calvin was just here for a week long visit and it was very uplifting, relaxing, and comforting to have him around.
Progress: I continue to re-evaluate and progress in my PT exercises, getting into more and more functional movement, and increasingly using my pilates reformer which feels fantastic. I also continue to have many firsts since the accident, including: driving myself to appointments, getting gas by myself, going on walks outside in the neighborhood, walking out to the chicken/duck run to let the ladies out in the yard, starting a fire in the wood burning stove, going outside to retrieve our escape artist of a doc (Mac), and continuing to do more around the house (cooking, doing dishes, folding and putting away laundry, light cleaning) — oh the simple things we take for granted!
Insurance battles: We are still fighting insurance and again I can not give sufficient praise for the patient advocate working what feels like a full time job to help me navigate this and fight for what is right. It continues to shock me how challenging this is… I know my situation is pretty complicated, and I also know that it should not be this difficult to get coverage for life saving care and continued care needed as a result. I am working with the patient advocate on nearly a daily basis to problem solve, pull information together, and make payments as needed,
Lawsuit: The lawsuit is also still moving forward and we have an amazing team working with us but the timeline is quite daunting and uncertain when we will have a resolution.
On the horizon: We have a fun weekend ahead of going to Ojo Caliente, having Patrick’s brother in town, meeting Calvin at Monarch for a ski day (I’ll, of course, hang out in the lodge), and then will be headed to Denver for more follow-ups and will hopefully get eye surgery and jaw surgery scheduled. I’m looking forward to the ability to plan the next several months and to seeing Colorado family and friends. When we get back I'll finally get to start seeing my mental health therapist again, another thing I'm looking forward to. I finally established with a PCP here in town and she will begin scar injection treatments in late March to help loosen the intense scarring on my face and legs. I also have several upcoming appointments with a pain injection specialist here to release muscle tension, re-establiish structural integrity of my joints, and hopefully stimulate bone healing in my broken arm (ulna) and avoid another surgery.
Wednesday 2/22 - Sunday 3/5
Few days in Taos: We had a nice couple of days home settling back in once Calvin left, though of course I missed him as soon as he left! Friday 2/24 was Patrick’s birthday and we spent the afternoon/evening at Ojo Caliente, Saturday cleaned house (I even vacuumed - it really took it out of me!) and prepared for our trip to Denver, and Sunday drove to Denver. The drive in general is quite an experience of processing and has been unique every time so far. This was the first time Patrick and I drove it together since the accident, and upon leaving home we weren’t sure whether I would return with him or stay for surgery. We ended up both going to CO and returning home together which felt good.
Accident site: On the way to Denver, we stopped to walk around accident site and found my hairbrush and another random thing from inside my car along with lots of debris from the accident. It was both numbing and emotional and has grown more so over time as I continue to reflect back.
Time in Denver (2/27-3/3): We enjoyed relaxing at mom’s house and spending time with family between appointments; Calvin was still in town and left Thursday to go home to Colombia. I’m so grateful for all the time I have gotten to spend with him and my mom during this recovery, that they were both able to in many ways prioritize being there with/for me and taking care of me before I was able to return home. We had a nice dinner out with friends on Thursday before driving home Friday.
Driving home: On the way home, we stopped to look at my car in the state patrol lot and also saw the car that was hit behind me which resulted in fatalities. It was shocking and breathtaking; I became even more aware of the preciousness and delicateness of life and how I so nearly walked the line towards leaving this human suit behind. The difference in damage between our two cars was both distinct and minute and the feelings associated with seeing all of this continue to evolve. Lots of thoughts swirling around in my head and heart!
Colorado Appointments: Lots of new information, next steps, and additional specialists involved after the week in Denver - yeesh! No procedures scheduled, which makes the timeline feel longer and unknown but that's sort of expected given how complicated my case is.
2/27 Oral surgeon appointment: I got my hopes up that we would schedule my jaw surgery in June (9 months post-accident as he and my face surgeon discussed and agreed upon), and the oral surgeon is asking that I see an orthodontist first to align my upper teeth before we fix occlusion with the segmental lefort. He said he can recommend someone in Co Springs or Denver and we will also look for someone in Albuquerque.
3/1 Face surgeon appointment: He said that my facial fractures seem to be healing well, though there is evidence of some collapse (plates exposed in upper left gums) and possibly fibrous union due to the number of bone grafts and plates required to repair the significant number of fractures in my face. He continued to relay concerns about the jaw surgery and suggested specific questions to ask the oral surgery team to get at how they plan to handle the procedure given the risks. He also gave me his cell phone number and offered to be called into appointments to discuss my case at any time (he’s amazing!). For my eye, he recommended seeing a specialist for surgical correction of my eyelid malposition which will likely include a skin graft and spacer at multiple levels of the tissue (anterior and middle lamella). Given my pre-existing condition of Sjogren's syndrome and the complicated procedure needed, an ophthalmologist and local oculoplastic surgeon should handle this follow-up. He will refer me to someone in Co Springs and we will look for someone in NM, too. I will see him again in a number of months after the plans have been confirmed for my eyelid and oral surgery.
Next steps: Thanks to an amazingly helpful friend in NM, I was given recommendations for oral care and oculoplastic surgeon/ophthalmologist in Albuquerque. I’m scheduled to see the orthodontist on Wednesday 3/8. I’m waiting for my face surgeon to confirm he agrees with the eye surgeon in Albuquerque and hopefully will get a referral there soon. I may also try the Co Springs eye surgeon and on one hand really want to see the person my face surgeon that I appreciate and trust immensely recommends, though on the other hand expect to run into insurance battles and may rather avoid the headache if there is someone in NM I can see.
Settling back in at home feels both good and hard! This occurred last time I came home that everything that has happened sort of hit me again, and the reality again sets in of what my life is like right now. Im exhausted easily and then sad that I’m exhausted, struggling a bit with feeling like I should be doing more but also know I need to rest and that I am actually doing a lot. I know I have amazing community here and at the same time feel far away from those in Colorado (and Calvin in Colombia) that are so important to me. How lucky am I to have so many wonderful people surrounding and supporting me!
This week I have appointments in Taos throughout the week and the Wednesday appointments in Albuquerque. My PT that I was really enjoying working with is away for 6 weeks, and the person we switched my care to is fully booked for weeks. My first appointment back with PT is not until 4/5 and hopefully something opens up sooner. I have a good PT routine and think I can figure out how to advance my exercises by myself while I wait to get in. I continue to work with my patient advocate on appeals (we’ve submitted 2 so far and many more to come), to update and work with my attorneys, and to continue to consider working more while balancing all of this plus appointments, my home care routine/needs, trying to have a “normal” life, and resting.
Monday 3/6 - Thursday 3/16
So much has happened in the last week and a half! I am generally very pleased with how things are progressing and also feel quite lost in the lack of control and exhaustion I feel daily. I will continue moving forward with whatever comes. Today is 5 years from the accident and I’m just happy to be here! It is difficult at times to stay grounded and I’m lucky I’ve gained so many tools to help me with this along the way. We’ve planned a trip to my sister’s condo in Puerto Penasco, Mexico for 4/11-18 and are very much looking forward to a get away!
Therapy: On 3/7, I finally saw my therapist again which was so lovely and supportive to see her and re-establish in person.
PT: On 3/10, I got in last minute with my new PT and we talked about how to progress my exercises over the next weeks if I’m not able to get in to see her. I’m increasingly working on balance and proprioception exercises, getting close to single leg squats, doing dead lifts, among many other exercises and continuing a ~30 minute pilates reformer routine. Things are feeling good though I am still having more pain in my ankles, femurs, and knees that I’d like and feel that, while I can do exercises and continue to progress, things are happening slower now.
Shifting oral care trajectory:
Abq trip 3/8: We liked both the orthodontist and oral surgeon; I will need braces 12-18 months as well as a root canal by a specialist prior to having my jaw surgery, with braces to continue for another 6 months after that. Unfortunately insurance does not cover orthodontic work so I was quoted ~$8,000 total over the 18-24 months of braces. They agreed that they would like to discuss risks and concerns with my face surgeon as they, too, are worried about the exposed plate and the health of some of my teeth.
3/12-13: Phone calls with both oral surgeon and orthodontist indicated additional concerns and steps needed. They are working with a trauma doctor and after the three of them met Friday to discuss my case, they have several concerns (many in line with my face surgeon, which feels reassuring): bone density as well as healthy bone vs fibrous union (scar tissue instead of bone-to-bone healing), the exposed plate in upper left gums and plate securing lower left jaw, missing tooth and misalignment (”step”) in upper left teeth, gum density, and general health of several teeth. They’ve ordered a CT scan and then will discuss results as a team and with my face surgeon. The likely pathway will be 1) get braces put on, 2) surgery to remove several plates, fix alignment of teeth that can’t be addressed with orthodontics, and assess bone density including the likelihood of doing bone grafts and osteotomy to adjust the bone alignment in my face/mouth, 3) braces 12-18 months and root canal, 4) segmental lefort surgery to fix malocclusion 5) braces for another ~6 months. I will also need to establish with a periodontist and prosthodontist for their involvement along the way.
Orthopedic general updates: I saw the pain injection specialist on Friday 3/10 and did prolotherapy on R ankle joint and several trigger point injections in the area. My ankle is feeling much more stable afterward; I will see him again in a couple of weeks, likely to work on my R hip area and shoulders. He has thought more about trying injections in my broken arm to stimulate healing and is nervous about possibility of infection due to the plate, so we will not be trying that unfortunately. My patient advocate suggests switching all care (except the face surgeon) to NM, so have asked for a referral to an orthopedic surgeon in Abq to handle my follow-ups and arm surgery coming soon.
Eye surgery next steps: On 3/13, I finally got a referral finally to the Abq oculoplastic surgeon/opthalmologist at UNM though cannot get in until June. We are working on getting a sooner appointment.
Insurance: I continue to speak and work with my patient advocate almost daily; she is beyond frustrated with my insurance situation and continues to reiterate that she has never seen anything this bad/messy. On 3/10, I had a denial processed for my first day in the hospital (10/16) for $858,000. I know this will get appealed and I won’t have to pay, though it is still shocking and breathtaking—and somehow numbing all at the same time—to see such a number! We are getting close to the point of being able to involve the insurance commission. So much gratitude for her help!
Home front: On 3/10, Patrick and I went to an art gallery opening in town and met up with some friends. This was my first “public” outing in Taos that wasn’t a small get together with friends. It felt very weird and also good to go out, see people, and feel involved in the community again. I was definitely exhausted afterwards and had a lovely relaxing weekend, mostly at home. This past week has been slower because many of my providers have children who are on spring break so aren’t seeing patients; with all the phone calls and coordinating care Monday-Tuesday, it feels right to have a more mellow week (that hasn’t felt mellow at all!). We’ve been enjoying lounging and doing paint by numbers on the couch with the pups. We also continue to go on walks and I’m now up to a little over a mile! We’re headed to Salida this weekend with Patrick’s family, have friends in Taos Sunday, then to Albuquerque Tuesday for Patrick’s nieces 1yr birthday celebration and to see my cousins. Whew!
Next steps: 4/4 CT scan and oral team follow-up; hoping for oculoplastic surgeon/opthalmologist and orthopedic surgeon appointments soon. I’ve added a section on this page called “current state” where you can easily see where things are, I hope it’s helpful! I also continue to update the timeline at the top of this section. Sending love to everyone out there!
Friday 3/17 - Tuesday 3/28
General Happenings:
Friday we went on a weekend trip to Salida with Patrick’s family. As my first time staying somewhere other than my mom’s house, I was both excited and nervous for the trip. Would I be comfortable in another space I hadn’t yet seen? Would I forget something important that I need? Would I be able to sleep? It was lovely, cozy, and easy - we hung out at the VRBO house the first night, and in the morning everyone except me and the dogs went up to ski mountain. I enjoyed a slow morning reading by the fireplace and then went up to the mountain for lunch. It was quite overwhelming upon arrival as it was spring break and packed full of people, I was nervous about my mobility on snow and ice, and didn’t have phone service to find the family. I found a place to sit outside and within minutes, Patrick was walking over to join me. We ate lunch with the fam and then P and I decided to go soak at the local hot springs while they skied for a few more hours. We had another nice evening at the VRBO, a slow morning, and then drove home. It was quite a nice getaway.
On the way home, we stopped at the signs for “Colorado Gators” that we have passed many times and wondered about. It was hard to tell exactly what it was upon arriving, as the entrance building was a small gift shop and you couldn’t tell what the “exhibit” was like. After following the reptilian footprints painted on the floor into a back room, we enter a large area with turtles wandering around on the floor, cages filled with all kinds of snakes and crocodiles, and two kitties sitting on top of the cages peacefully watching everything and hoping to get pet. We soon also noticed a large bird in the rafters above, mocking us as we talked about what we were seeing. A woman quickly walked up to me and asked if I wanted to hold the crocodile - and next thing you know we are posing for photos (here and here) with a crocodile in my hands. I felt like a kid again. After this room, we walked into a huge greenhouse with ponds and amazing succulents and moss in the beams supporting the building. What a cool place - I so enjoyed this pit stop on the way home.
We were then home for a day and a half before traveling to Albuquerque to see my cousins and go to a Zoo party for Patrick’s niece’s 1 yr birthday. I historically haven’t enjoyed going to zoos as the caging of animals in small areas different from their natural habitats has tugged on my heart strings and at times, even made me angry. This time, however, I felt so filled with joy to be with family that I haven’t gotten to spend much time with, to connect with people, and to see the beauty of all of the animals - their aliveness, the majestic cheetahs, kookaburra singing its wild and overwhelming song, hyenas sleeping on their backs like I have seen many dogs do, elephants excited to eat celery sticks, a guerilla mama holding her baby. It was a cold day and my body did not feel comfortable, there was no ease of movement, yet I still enjoyed the experience and think it even somehow made me cherish my own aliveness. After leaving the zoo we ate lunch at a local favorite (Frontier) and ran into a family friend who we hadn’t seen since the accident; in our catching up he relayed that he is in school and recently wrote an essay about me and the power of perseverance. That sure warmed my soul.
Since Friday, I had been trying to refill for my lyrica (nerve/pain med) and had a feeling it might be difficult given this is the first time getting the prescription from my Taos PCP (previously getting it from Denver PCP). For whatever reason, this has always been a difficult and frustrating prescription to refill, requiring several visits to the Walgreens pharmacy and long waits. I started tapering myself on Tuesday, taking 1/day Tuesday and Wednesday instead of my regular 3-6. When weather is bad, which it was during this time, I take 6/day. Running out wasn’t anyone’s fault, though the system my PCP uses to send controlled substances wasn’t working properly and didn’t send the script through. Despite my regular following up, the MA at the doctor’s office reassured me that it was processing and I should soon get it. Perhaps someone could have checked why it wasn’t going through. On Thursday, I finally texted my PCP and by Friday afternoon was able to get the refill. I was without my proper dosage from Tuesday-Friday and am surprised by how much I was affected though it is good to know that I need the prescription but at the same time don’t like being dependent on something. My energy was sucked out of me and I had a hard time holding my body up, everything hurt, but in a different way than back in the hospital when I started taking it; it was originally prescribed to help with my excruciating and unrelenting facial pain, which thankfully did not come back this time. Instead, I was feeling depressed and anxious and simply in pain all over and with no energy, so it was a miserable week.
Saturday I finally started feeling like myself again, and two good friends from Denver came to town for a quick getaway. We had brunch at a new favorite spot, Sabor Real, and it sure brightened my mood and filled my cup to see friends. Patrick and I then did house projects and ran errands and had a nice relaxing evening at home, finishing our paint by numbers that we’ve been working on. Sunday I finally felt strong enough to get back into my home PT and did my routine again for the first time since Wednesday.
Lately I’ve been reading a lot and so enjoying reading for fun again. When you’re in school and also working, there’s little time for pleasure reading. I was looking forward to more time spent in the world of books after finishing my MPH in July. My new routine is reading in bed in the mornings with my coffee and simply relaxing; my nervous system is happy in these moments and I have a deep knowing that this time spent is right. I’ve recently read The Song of Achilles, Roadside Attraction, The Scent of Burning Flowers, and am now on to Turtle Feet and am reading a poem a day from Consolations: The Solace, Nourishment and Underlying Meaning of Everyday Words. While doing PT, I often listen to audible and am currently switching back and forth between Exhalations, Rest is Resistance, and Pleasure Activism. I’ve also been loving poetry and added a section to the website called “inspiration” below where I’ll share what has been guiding and inspiring me.
I met with two writing coaches last week and know while it is not the right time for me to add more to my plate, that they would both be fabulous resources for me as I think about writing a book about my experience. I was reassured that I’m doing the right thing by focusing on my healing and writing about whatever comes up.
The feeling of not having control is overwhelming and at times, I feel like I am drowning in it. A dear friend recently said, “That's the other thing with time and control...that feeling when you're ready and anxious for things to happen so you're looking toward the future, but the universe has also been trying to tell you that now is all we have so you have to balance your outlook with relishing in whatever you're blessed with right now.” I am constantly reminding myself of this and trying to enjoy the present, and most importantly the simple fact that I am still here.
Insurance: we’ve finally made some headway on the insurance battle, thanks to my patient advocate’s tireless efforts and my cousin who was able to connect with leadership at BCBS NM. They were shocked about my situation and immediately saw many faults in the way my case has been handled, promising to fix things and also to do an internal review of my case to improve the many fail points in their system and processes as evidenced by my situation. I have been FINALLY assigned a case manager and spent about an hour and a half yesterday getting them up to speed. According to them, there is absolutely no reason why someone in my situation shouldn’t have already been assigned a case manager to help. I still have many outstanding bills and threats of being sent to collections, but am hopeful that the situation is on its way to being resolved, though I don’t expect it to happen soon or for my work with the patient advocate almost daily to stop. Of course, this also makes me realize how privileged I am to have these connections and support and wonder what this experience would be like for someone without that. I can hold both optimism that the system might change due to an internal review of my case and also frustration knowing this is simply a microcosm of the bigger picture.
On the Horizon:
4/4 to ABQ for CT scan and orthodontist appointment, oral care team (orthodontist, oral surgeon, trauma doc) will review my CT scan and discuss with my face surgeon, we should hear from them with a plan the following week for surgery, orthodontic, and other oral care plans.
4/11-18 Mexico trip
4/20 to ABQ for evaluations with my new oculoplastic surgeon/ophthalmologist and root canal specialists
5/1 to ABQ for orthopedic surgeon evaluation for my non-healing ulna fracture (L arm). am very much looking forward to learning more from all of these appointments, am hopeful that the next several weeks will provide more clarity and even a plan for next steps.
