April-May 2023
Wednesday 3/29 - Thursday 4/13
Fun outings, my birthday, and ABQ appointments:
On 3/31, we went to an alien/cowboy themed birthday party for our friends where we DANCED (photo here). This was my first time dancing, I was happy to have the cane with me, and wow did it feel good to move! I certainly cannot dance like I used (yet!) to but so enjoyed moving this body to music. Then on my birthday (4/1) we enjoyed going to Ojo Caliente for a soak and nice lunch, followed by another costume dance party at Meow Wolf with several DJs (photos 1, 2, 3). We ran into many people I hadn’t yet seen since the accident which felt very yummy and heartwarming, and dancing twice in a few days was such a milestone. In many ways it felt like my first birthday and what a way to celebrate.
Then we were home for a day and I had an appointment with my energy work/movement therapist, then went to Albuquerque for back-to-back family get-togethers with both of our families followed by two appointments Tuesday morning (4/4). On the way to Albuquerque, I received a voicemail that my CT scan Tuesday morning was not approved - I spent hours on the phone trying to figure this out, it was scheduled 3/16 so there's no reason we shouldn't have approval. It seemed that because my oral surgeon has both a private practice and works at UNM where my surgery will take place, both offices were arguing with each other about who needed to file the paperwork to get my scan approved. Why am I just finding out less than 24 hours before the scan was to happen? I can’t say. Why didn’t someone simply submit the necessary paperwork in time for me to get approval? It makes no sense. I had to stick with my gut and the motto that I believe, in part, has gotten me where I am today: the insurance and healthcare system failures will not get in the way of my continued care. I spoke to both offices, my insurance, and my patient advocate several times each trying to remedy the situation with no luck. I ended up getting the scan without insurance approval.
After that appointment, we picked up three 1 yr old hens from my cousin to take home and add to the flock - very exciting (photos here and here). Then we hurried to an appointment with my orthodontist to do more x-rays, photos, and imprints of my teeth so they can create 3d printed models of my jaw to use with the CT scan for planning purposes. She made a joke about how that morning she was listening to an interview with the government official who organized the Osama Bin Laden attack, and that something like 80% of what went into the successful outcome was planning. She felt that this strategy applied to my case. In follow-up, she texted me that they are concerned about my missing tooth on the upper left and need old x-rays to compare with; I’m in the process of hunting them down. They are also concerned that I have a fractured lingual cusp on my mandibular left second premolar (jargon, I know) which will need to be addressed. The orthodontist, oral surgeon, and another trauma/oral surgeon will discuss my case on Friday (4/14) and get back to me soon after with proposed next steps.
When we got home from Albuquerque, I fell asleep on the couch almost immediately after eating dinner and slept for over 12 hours. I know that my energy is precious and I am conscious of the need to listen to my body, set boundaries, and take care of myself. I think this was a sign that I did too much in a short period of time - one lesson is to not fill up the time in Albuquerque when traveling for appointments, though it is tempting because we have so many people that we love and miss and want to spend time with.
Taos appointments:
I've had a massage, saw my energy work/movement therapist, had two pain injection treatments (focused on my shoulders, rib cage, and pelvis), as well as chiropractor/myofascial appointments. I am feeling continuously grateful to have this amazing support team working together in Taos.
I finally saw PT again and we increased my exercises to include lunges, step-up lunges, single-leg deadlifts, and single-leg squats using a chair for minimal support. I did this two days in a row (notably the day of and after getting pain injection treatment) and then woke up in the middle of the night with screaming pain in my pelvis. Luckily, I had an appointment with my chiro the next day. She was surprised at how locked up my pelvis was and suggested that my new exercises are too much until the stabilizing injection treatment I had just a few days ago can set in. So, until my pelvis stabilizes, I needed to back off from the new PT exercises. I took Friday-Monday off of PT completely and started back Tuesday with my previous set of exercises (no lunges, no single-leg deadlifts).
Healing is my top priority right now and it can be hard to find fulfillment in doing the same exercises without seeing much progress. I realize I am making amazing strides every day and it is noticeable to other people, but because the daily progress is somewhat unnoticeable to me and combined with having to back off from new exercises, my sense of fulfillment is a bit dulled. I am constantly reminding myself that I am resilient, powerful, and whole in the midst of feeling somehow incomplete. It is a constant battle to wake up with daily reminders as so many parts of this body don’t feel as I’d like or even in some cases, like my mouth, don’t feel like they belong to me. I am, as I have said before, a mosaic of grief and joy. The joy most times overpowers the grief, with overwhelming gratitude in simply being alive and surrounded by life and love, and also often stricken with waves of overwhelming grief that I allow myself to experience and let pass.
More general happenings:
I took the dogs to vet by myself which felt like a huge accomplishment. We decided, for many reasons, to cancel our Mexico trip and stay home with the hopes of feeling more grounded, nesting, doing house projects, and hopefully getting to visit my mom. We got a kitty (Umi - photos 1, 2, 3) and are working on getting her and the dogs to feel like family to each other - slow but steady progress! We (mostly Patrick) also extended the chicken/duck run to give them more space (see here and here)- I was able to help some and while doing so, again battled the frustrations of what I still cannot do with the celebrations of what I can. We’ve been blessed with clear, sunshine days, with minimal wind. Getting out in the sunshine is a sure way to brighten my spirits.
I enjoyed going to an Easter brunch at a friend’s house and we also hosted friends for dinner one night. Getting back to more socializing feels great and I am also constantly trying to pay attention to my energy and get the balance right.
Insurance:
The insurance saga continues and thanks to connections to the BCBS NM Chief Medical Officer (CMO), my case was escalated to their attention. Friday I got a call from the CMO, the Director of Medical Services, and looped in my patient advocate. They were very apologetic about my situation and within about 6 hours were able to take care of the pending air ambulance and UC Health hospital bills totaling about 1 million dollars. Finally! It is shocking that they could remedy these pending denials so quickly and frustrates me to think about how broken their system is. They, too, seemed more frustrated by how easy it was to fix. We also discussed sending them documentation of all of the big hurdles and how my patient advocate has experienced other insurance handle them better, so that BCBS NM can learn and improve for other patients. At that time, it felt very promising and a big relief. We did the promised follow up and had to push to get a reply, which is not only disappointing for my case but also makes me cautious about the optimism I was feeling… that my experience may have a positive influence on BCBS NM’s future operations. BCBS NM needs to make serious changes to improve their processes, computer systems, etc. - I feel committed to making my case more publicly known when the time is right in the hopes of pushing for necessary change in the system.
On the Horizon:
4/16 Accident 6 month anniversary
Week of 4/16: expect follow-up from my oral surgery team about next steps
4/20 to ABQ for evaluations with my new oculoplastic surgeon/ophthalmologist and root canal specialists
4/24 Patrick and I celebrate 7 years together
5/1 to ABQ for orthopedic surgeon evaluation for my non-healing ulna fracture (L arm)
I am cautiously optimistic about having a plan for next steps after these next few weeks of appointments and follow-ups. I have had my optimism crushed several times by imagining that I will come out of appointments with a plan, only to find that we need to gather more information or more specialists need to get involved. I am learning to hold optimism, caution, and curiosity simultaneously to help me manage the feelings of uncertainty and lack of control over what happens next.
Thursday 4/14 - Friday 4/28
General happenings:
Patrick and I have generally been enjoying nesting, doing house improvement and art projects, and just spending time at home when we he isn’t working and when I’m not bouncing around to my many appointments in Taos and Albuquerque. Umi (our new kitty) is slowly warming up to the dogs and increasingly spending more time out around the house, which is a fun transition. We sure love our animals.
Over 4/15-17, Patrick’s dad and partner came to visit with their two new puppies; I hadn’t yet seen them since the accident and it felt so good to hug them and spend time together. Patrick and his dad built a new latilla fence around our hot tub, making it a much more private experience. It turned out beautifully!
4/16 was my 6 month accident anniversary, and I posted this on Instagram in honor of the day. I went to a clothing swap with some friends and it felt like a lovely way to celebrate life, get new-to-me clothes, and walk away with several fun items that honor my new body and beauty.
We’re starting to prep our garden beds and are seeing the baby growth of some of our perennials - I’m so looking forward to our vegetable and flower gardens. I find nourishment in working with the earth and feel refreshed and alive with the sunshine on my skin. It is especially fun to garden and do yard work with the chickens and ducks running around. Yay for Spring!
4/24 we celebrated our 7 year anniversary with a slow morning, delicious breakfast (biscuits with bacon, cheese, green chili baked inside and an egg baked on top; homemade duck egg hollandaise), relaxing afternoon, nice dinner out at Aceq, and then went to a concert (Vieux Farka Toure).
Medical and recovery updates:
Eye: 4/20 I saw the new ABQ oculoplastic surgeon/opthalmologist to assess my right lower eyelid healing and surgery next steps. He was happy with how well the scar tissue is healing and wants me to continue working on it daily; he does think I will eventually need a graft and spacer surgery to repair the eyelid tissue. He is going to collaborate with the oral surgery team and try to combine this surgery with one they are planning. It will feel good to have one less procedure if we’re able to combine.
Oral care / oral surgery prep:
I heard on 4/19 from the oral surgery team that they are waiting for 3d prints of my jaw to look at with my recent CT scan for a surgical planning meeting and will follow up after that.
4/20 I saw an ABQ root canal specialist per the oral surgery team’s referral. He is worried about the health and viability of several teeth, mostly on the upper and lower left, but it is hard to know for sure because of the numbness and likelihood of removing/losing teeth in the oral surgery process. My front left tooth which was pushed back due to my facial trauma and became darker in color is likely to stay so we decided to do a root canal and bleaching to bring it back to its original coloring. He will stay in close communication with my oral surgery team about other teeth at risk as we go forward.
4/25 we went back to ABQ to start getting lower braces and to do the root canal and bleaching. It was a big teeth day and also high cost with limited insurance coverage - ~$10,000 total. The orthodontist is estimating a total of 24 months of braces, the reality of which is just starting to set in. Ahead of the appointments, I was feeling excited by having some clear next steps and to be moving forward. The root canal/bleaching was painless and easy, but the braces are quite painful and feel like a constant reminder of the accident. The pain/reminder, plus the realization of having braces for the next 2 years, is shocking to my system. I know this will pass and despite struggling with it all, am still very pleased to be moving forward.
My orthodontist talked a little bit about what she thinks are the next steps for my oral surgery and explained that the oral surgeon is bringing in other specialists outside of UNM to consult with him on the surgical plan; I am still awaiting an update. She relayed a bit of the plan from what she understands, which includes increasing the wire strength on my lower braces to set a solid foundation for the upper jaw to fit on, adding brackets to my upper teeth so that after the first surgery we can “wire” my jaw shut for a period of time. I audibly groaned when she said this (they were putting my braces on at the same time so I couldn’t talk), and she quickly specified that it would be with rubber bands and not wire so more gentle than it sounds. I was not expecting this! It sounds like this will happen after my next oral surgery, though no plans have been finalized. She also explained that they are thinking they’ll have to break my upper jaw in 4 pieces in order to fix the alignment; this type of segmental lefort surgery is not something they like to do due to the complexity but they have done it before. It is so hard to navigate getting information piecemeal, be able to both get my hopes up and to quickly let things go and shift to the new plan when more information is available.
Weekly appts and home PT: I also continue weekly-ish PT, chiropractic, massage, energy work/movement therapy, and pain injection specialist appts in Taos. I’ve started speedwalking (30s on/30s off) and plan to start swimming for PT this weekend. Happy to be adding more variety of activities to my training routine.
Insurance: While the BCBS NM leadership connection has been extremely helpful (they overturned $1M of my bills very quickly), they have not met our hopes/expectations for all that they would help with. We are now back to submitting the remaining appeals for several key steps in my care (for example, surgeries have been paid for by insurance but the anesthesia has not). It is such a messy situation and I am learning more than I ever imagined possible about how broken the system is from the way providers submit for insurance approval, to the way the insurance system automatically processes such bills, to the difficulty in communicating with someone from billing or insurance about complicated claims, and on and on. It seems common sense that someone with several broken bones would need follow-up x-rays and CT scans, yet getting approval is not straightforward. Then the bills that I receive from a provider do not match what is in my online insurance portal. There is no question in my mind that I would not be able to navigate this without all of the support I am so lucky and grateful to have; I know that so many people do not have such support and it is hard to fathom what they experience when I, with all of the support that I have, am nonetheless having a very difficult time managing all of this.
Work/Income: I still do not have the capacity to work very much and am spending a very small amount of time each month on a couple of contracts that I had before the accident. I’m thankful to work with such supportive and understanding people who give me the space that I need to heal and the space to do a little work on the days when I feel I have the capacity. The feeling of not being able to show up in my work as I did before is still hard for me at times, but I know I am focusing on what I need to right now. I applied for short-term disability at the beginning of the year and am hopeful it will come through eventually, though it looks like it could take several more months to know.
On the horizon (you can see a full picture timeline at the top of this section):
5/1 non-healing ulna fracture assessment at UNM, assess bleaching and get permanent filling in front L tooth
5/3 finish lower braces
I’m so looking forward to warmer weather and outdoor activities: gardening, hanging out on the sidelines while friends play volleyball at the park, going to the river, camping, and generally just spending time outside!
Saturday 4/30 - Tuesday 5/16
Medical updates and constantly shifting plans:
Mouth:
As of 4/25, I now have lower braces to set the foundation for my upper jaw to fit on. We finished getting them in place on 5/3 and set another appt on 6/14 to increase the wire strength once more. In my appointment on 5/3, the orthodontist told me she knew the oral surgery team had done a surgical planning meeting using software to assess possible outcomes of removing different plates, teeth, etc. She did not know the plan that was made, only that the meeting happened. She said we will need to put top braces or only brackets on before the first surgery and it was likely we could do that on 6/14; she also relayed hopes for surgery #1 to happen this summer but no promises.
On 5/4 (not even 24 hours after the orthodontist appointment), I got a text message from my orthodontist’s medical assistant letting me know that I need to go back to Albuquerque on 5/24 to add top braces in prep for an appointment with the oral surgeon later that day. The text said that both appointments needed to happen on the same day and to let them know if I have questions. I asked for more information about the plan but was told that they didn’t have that information. I wish I knew more about all of this but right now, that’s all I know! At this time, I was still hoping for surgery 1 (exploratory face/mouth surgery including removal of hardware and possibly also teeth, bone grafts and osteotomy, as well as the eye skin graft and spacer surgery if the two teams can coordinate) to take place this summer.
On 5/10, I got a call from UNM Ear Nose and Throat/Oral Surgery scheduler. The person I spoke to said that she was calling to let me know they had to change my surgery date. I told her I was unaware I had a surgery appointment at all, we both laughed, and she said that my original surgery was 7/21 but the OR spot is no longer available so I am now scheduled for 8/17. I told her I had an appointment with the surgeon on 5/24 and we agreed that we hope I get more information about the plan at that time.
On 5/12, I went back to Albuquerque to again assess my tooth bleaching and next steps. The color of the tooth has significantly improved (it was quite purple before and is looking much more normal colored), but he suggested doing one more round of bleach. He replaced the current bleach with new and I will go back on 5/24 to get the permanent filling.
Left arm:
On 5/1, I saw my new orthopedic surgeon at UNM. As I expected, my left ulna fracture is still not healing well (non-union or slow-union) and I continue to have regular pain and discomfort when using my arm and also when resting. They want me to wear a splint to protect my arm when doing riskier activities (like floating the river) and I have been given a 10 lb weight limit, which will take some time and mindfulness to get used to (SIGH). She was surprised that I am still experiencing numbness in my middle finger but did think it likely that feeling will come back with more time. They've also prescribed me a bone stimulator machine to use at home every day and to find a home health organization to come set it up. I immediately was concerned about this referral as I could not even find a home health organization to provide care for me when I was in Denver, so I expected even more difficulty in Taos. I spent the next week trying to track one down and it felt nearly impossible to find a company that services Taos, is covered by insurance, and has the equipment needed. I reached out to my care coordinator at BCBS, with no luck. Then I reached back out to the UNM orthopedic team and they were able to get me in touch with a company in Albuquerque, and I picked up the machine on 5/12. As explained to me, the machine sends electromagnetic waves into the area of concern to excite osteoblast cells causing them to split and lay down new healthy bone cells. I need to use the machine for 30 min/day at around the same time every day. I told my PT about this next step and she was not optimistic about seeing results with the machine and shared my frustration at the situation. I so wish they would just do the bone graft surgery to get me closer to having my arm back… regardless of my desires, I will use the machine as prescribed, take care with my arm, and see the surgeon again on 8/7.
Insurance:
This past week I also received several phone calls from the air ambulance company that my helicopter bill has still not been paid and they need information from me to file an appeal with insurance. My patient advocate and I were both very confused and frustrated and reached out to the BCBS NM Chief Medical Officer to see if she could help. She said it had been paid in full and to put her in contact with the helicopter company. I spent several hours this week trying to get a handle on a bill that I was promised had been taken care of.
We are also working on several other appeals and had another long phone call with UC Health billing to get a handle on the almost 20k showing as past due on my account. We again got my account put on hold while we work with insurance and while UC Health assesses the appropriateness of their billing.
My patient advocate has relayed hopes of getting me set up with a situation where I can simply go see a doctor when I need to without an insurance hassle nearly every time. I have full confidence and trust in her and again, do not know what I would do without her support.
Other general care:
My chiropractor thinks I will need to see another chiropractic specialist in Albuquerque for my upper cervical spine misalignment that is causing headaches and nerve inflammation at the back of my skull. I have seen this specialist for previous whiplash injuries and she has helped immensely. I’m working on coordinating an appointment with her sometime when I’m already going to Albuquerque.
My chiropractor and massage therapist both said beautiful and inspiring things about my body in recent appointments: 1) my body has an inherent knowledge of how to make itself whole again with all the trauma and in many ways, new-ness of my body; they are just tapping into the wisdom it already has. 2) my deep leg scar tissue “could bloom”, that they are now more “together, with”, “part of,” my body, instead of feeling like a separate thing as they have felt in previous sessions.
My chiropractor shared an article with me about the UC Health Hospital Team coming together to care for many individuals injured in the Colorado Springs Club Q shooting. Wowee is this article moving and many of the people mentioned are names I recognize from my own experience at UC Health. If you feel like an inspiring read and possibly even a cry, I highly recommend reading the article.
I have had several very helpful sessions recently with behavioral and naturopathic/holistic health providers - I’m lucky to have such robust support! We’ve focused mostly on my general feelings of overwhelm and difficulty processing everything that is going on (it feels as perhaps everything that has happened to me is finally catching up and starting to set in), feeling at times like it is hard to relate or that I don’t belong (I’m an alien!), and how it will serve me to lean into these feelings, grieve more, and let it out. I am spending most of my days stuck in sympathetic mode (fight or flight) and have many tools to tap in to in support of switching to parasympathetic (rest and digest). I know there is a lot of integrating that I need to do, both alone and with support of providers, to move through all of the trauma and continued stress of my recovery.
I continue to see my PT every other week and they are very happy with how well I am doing in general. I am a bit frustrated with the slower progression of mobility, but also recognize how much I have and continue to progress. I am eager to be able to run and jump! To get back to playing volleyball! To chase my doggies around! One day at a time…
Medical next steps (in addition to my regular weekly appts in Taos, the following are all ABQ appts):
5/24: add top braces brackets; remove bleach and get permanent filling; oral surgeon follow-up
6/12: periodontist (gum tissue specialist) eval
6/14: increase wire strength in lower braces
7/14: prosthodontist (dental implant specialist) eval
7/20: eye surgeon follow-up
8/7: arm surgeon follow-up
8/17: oral surgery #1 plus eye skin graft surgery (I hope)
Life happenings and reflections:
I’ve been really enjoying spending time outside now that days are warmer, setting up the gardens and doing gentle yard work. It feels huge that I can even do this, though of course it is much harder than it used to be and I need to rest afterwards. I do yard work on the days when I am not doing PT at home and on PT days, still try to get some outside time for daily vitamin D.
We went swimming at a local gym and want to make this part of our weekly routine - though routine is hard when you have random appointments all the time! We have goals of regular swimming and going on walks with the dogs and are figuring it out while listening to the need to also rest.
I have had a realization this last week that life is almost harder now that I can do more regular activities - there’s a strong desire to return to “normalcy” yet, in many ways, I do not feel normal at all or even sometimes like I don’t belong. When I was in the hospital or even at home with more limitations, I knew what I was doing every day, what I could and couldn’t do. Now that I can go to the grocery store, run other errands, etc., it is almost more in my face the many ways I am still so different, both right now and for some time — and in many ways, a whole new person after what happened. Here’s an example to highlight what I’m talking about in action:
We went to another concert at Meow Wolf with Patrick’s brother and partner and a friend from Taos. Such fun to dance and to spend more time out with family and friends! I had a weird interaction with someone at the show… we were dancing on a platform area off to the side of the dance floor where we could see the stage and not be in a crowd. A woman stepped up in front of me with no notice that I was already standing there. She invaded my space, something that is not at all uncommon at concerts, though I felt immediately triggered. She had her back to me and was dancing wildly with her friends down below. I felt the urge to push her… I put my elbow in her back and gently pushed her off the ledge. She was not happy (of course) and sort of came at me like she wanted to fight. My thoughts were, “You have no idea what I have been through! How hard I have worked just to be here!” I was a bit overcome with both anger and sadness. I didn’t like even having those thoughts, or feeling like I am owed something, and then had another realization of what I might look like to someone else. I feel, at times, like my face is off putting and wonder what she and others thought when they looked at me. Patrick recognized all of this, and held me from behind while we danced… and then I realized we both had silent tears streaming down our cheeks. He held and supported me and then would let go at just the right time, as if empowering me to stand on my own and be strong. Whew. I am thankful for my partnership through this strange existence.
Despite all of these challenging feelings and the difficulty of re-integrating, I am doing so well! I feel inspired, grateful every day simply that I am here and for much more than that, and mostly move through my days feeling joyful. I continue to work on letting my feelings be what they are and appreciating them, leaning into whatever thoughts and feelings come, and letting myself grieve, while also knowing so deeply that life is good.
Wednesday 5/17 - Thursday 6/1
Life happenings:
The week of 5/17 I had a lovely week of no Abq travel and as it started, I pictured myself socializing more and getting more things done around the house (spring cleaning dreams). In the end, I spent more time catching up, charging my battery, and when I did feel like making plans with friends, ended up caught dealing with insurance and bills unexpectedly (unexpectedly and at the same time, very expectedly).
We had a surprise visit over the weekend of 5/19 from Patrick’s brother and partner, who we so love spending time with. We watched the Nuggets, ate yummy food, hung out at the house, and went to the river.
We sadly had all of our ducks killed over the past few weeks. The first was taken by a fox at dusk, and we both felt guilt for not putting them away before sitting down to dinner. Baby Spice was the first, and our favorite. Then a week or so later, we discovered a dead duck in the coop missing her head. Using a wonderful chart my cousin shared years ago, we discerned that this had to be a raccoon. Our neighbor mentioned that some creature has been on their roof at night, even knocking on their bedroom window (yuck!)… I had a raccoon living on the roof of my college dorm and am familiar with this behavior. Then, every other night for the next four nights, the remaining two ducks were killed in the same way. So sad. But, in my trip to Albuquerque for an appointment on 5/30, I was able to coordinate picking up 4 1ish-year-old duckies to add to the flock. We are waiting to get to know them to name them.
We’ve been enjoying watching our boys, the Nuggets, excel in the NBA playoffs!
Our garden and yard are really shaping up. We have several flower beds with perennials and wildflowers, a huge vegetable section with various greens, red cabbage, beets, carrots, radishes, snap peas, green beans, peppers, tomatoes, and herbs. We’ve landscaped the garden area to have a section of nice small rock, a new fence (which Houdini Mac, our almost 4 year old boxer, quickly escaped), and a bench to sit on and enjoy the space. I was enjoying a morning meditation and joined by one of our chickens, Scary Spice (see here).
We took a one night trip to Durango to visit dear friends who have recently moved to work and live at Colorado Trails Ranch. Wildflowers, running water, horses, fresh mountain air… Ahhhh.
Umi, our new kitty, and Mac and Otis, our boxers, are slowly becoming more and more accustomed to each other. She certainly feels like it is her house and they are mostly good about not chasing her, though sometimes can’t help it.
Medical updates:
Mouth: 5/24 we went to Albuquerque for three appointments - to add top braces brackets, remove the bleach in my front tooth and get a permanent filling, and check in with the oral surgeon. We now know the following:
There is a concern that due to all of my facial trauma, some teeth may have become anchored to the bone and may not move as expected. I need to watch out for this and let the orthodontist know asap to assess what’s happening.
We need to schedule a hardware removal surgery asap to remove the exposed hardware in my upper left jaw and other surrounding plates.
The orthodontist timeline will guide when we can do my big jaw reconstruction (segmental lefort) surgery as we get up to having a strong arch wire both top and bottom. I will see her every 4 weeks to assess progress and increase wire strength as able.
Jaw reconstruction surgery will happen possibly in 6-9 months, pending orthodontic progress. This will be both exploratory and segmental lefort, so depending on what they see they will do bone grafts, remove and reposition teeth, and jaw realignment. If they have to do a lot of bone grafts we may have to wait for jaw alignment but that’s not expected.
Concerns for surgery remain the bone density and healing, the perpendicular/internal plates my face surgeon had to put in from the inside that will have to be removed, and the area on the top left where there’s a “step” in my alignment as well as where I am missing a tooth and have a fractured tooth.
The oral surgeon said it is not important right now to establish with the periodontist (gum specialist) and prosthodontist (implant specialist), so those are on hold.
The endodontist said that the fractured tooth on my lower left side needs a crown asap, so I will need to see a dentist after all. The crown will require some coordinating as I’ll have to see the orthodontist to remove the braces wire before my appointment, then getting the crown, then getting braces wire put back on.
It was a very overwhelming day and by the last appointment I just got in the car and cried a little bit before going to lunch with a friend.
Teeth: Over the weekend of 5/27, I noticed that my front right tooth had moved significantly compared to the other teeth (see here for day 1 of top braces, and here for day 5). I went back to the orthodontist 5/30 to take photos of my teeth for her to review with the oral surgeon. She expects that the surrounding teeth are, in fact, anchored to the bone due to trauma, and will likely have to be removed during surgery and replaced with implants or partial dentures depending on healthy/available bone stock.
Arm: I have been increasingly frustrated by having to use the bone stimulator machine for my non-union ulna fracture, but I continue to do it every day as prescribed. Following a suggestion of my PT, I asked my Co Springs arm surgeon for her opinion on my case and she said she often gives patients that option of bone stimulator and waiting vs surgery. I asked my new arm surgeon to discuss these options and got scheduled for surgery on 6/6. I was so happy after this call that I cried. I was driving to an appointment and blasting Burna Boy crying happy tears.
6/6 Surgery: After knowing this surgery was scheduled, I reached out to both my oral and eye surgeons to see if they can combine what they need to do with my arm surgery. As of 5/30, I am officially scheduled for both arm and mouth, and still holding hope for the eye to happen at this time too. It turns out my mom, brother, and his partner were planning to visit over the weekend of 6/3 so they will be here to help post surgery.
Movement progress: I continue to progress well with my mobility and pain, so all good on that front. I've added some light jumping on my pilates machine to my home workout routine which feels amazing, and have been enjoying doing quite a bit of gardening and yardwork at home while I still have my arm to work with. I am luxuriating in the sunshine and in my ability to move and breathe.
Next steps:
6/6: left ulna bone graft surgery and upper jaw hardware removal (hopefully also eye skin graft)
6/14: orthodontist follow-up
6/20: arm surgeon follow-up (likely also oral surgeon)
7/12: orthodontist follow-up
7/20: eye surgeon follow-up
Insurance: I expected this to calm down. It hasn’t. Perhaps with my continued care journey and constantly shifting plans and new providers, one could have expected a continued frenzy. Many of my oral care providers, despite my efforts to transition everything to NM, are being denied. My $95,000 helicopter bill still has not been paid. We are fighting about CT scans from December. My UC Health bills from the first days through follow up appointments are still confusing, don’t match what is in the BCBS system, and show that I owe some $11,000. I know this could all be much worse, yet it is rare for a day to pass without some insurance hooplah popping up unexpectedly. I am getting better at knowing how to keep my nervous system calm while dealing with these daily battles, and also know deeply each time something comes up that I am still “working” a full time job with focusing on healing and all the things that entails, coordinating my care, and battling insurance.
Reflections:
I was joking with a grad school friend who is also going through health challenges about us being Masters of Adapting (MOA). We deserve to add those three letters to our names in addition to our recently acquired MPH (Master of Public Health). This MOA title feels more appropriate with each coming week.
From the week of March 8th through July 20th, I will have traveled to Albuquerque 16 times for appointments. It is about 5 hours total of driving, times 16, is 80 hours of driving in a matter of 20 weeks. This, on top of a typical 4 Taos appointments/week, is weighing on me. I often think about what it would feel like to live in Albuquerque instead of Taos, and know in ways it would feel supportive and I would also long for my home and our intentionally cultivated space.
At times it feels like I am stuck and everything/everyone is moving and progressing around me - like I’m in the middle of the solar system watching everything fly/orbit around me and I’m stuck in quick sand. Sometimes the coordinating, moving targets, insurance battles, and unending questions overwhelm me. There’s a dance to finding balance in quieting the monkey chatter of my mind and thinking about what needs to be done to keep me moving forward, and making it happen.
I have moments where I yearn to be the old me, and who I was growing to be before the accident. I had just finished graduate school, was building a consulting business, and looking forward to having more free time without the constraints that come with being a full time student while also working. So many things are different than I pictured back then... of course they are. I am, and forever will be, this new and evolving me. I often think about this when eating or drinking; I am conscious of my mouth and face, the way it feels and doesn’t and how I adapt to that. I am often wiping my mouth for fear of having something on my face that I cannot feel. This also, as you may imagine, comes up when kissing and this deep form of intimacy is a bit lost to me. In addition to these physical aspects that are significantly different and challenging, I have a new perspective on life that I feel in many ways is a gift.
