Jan 29th - Feb 15th, 2024
Monday January 29th - Thursday February 15th
Medical updates:
Mouth:
I continued waking up gritting and grinding my teeth at night and had been snapping one of the top-to-bottom rubberbands in my sleep. I was a bit worried and glad to see the orthodontist on 1/30.
1/30 orthodontist appt: she was very happy with the progress and even said that snapping the band is a good sign because my teeth on the side are aligning better. She discussed ongoing concerns with my mouth and that my bite may not be perfect, but time will tell. I am still at risk of losing many of my teeth, and again, time will tell. It may be time to establish care with a periodontist to assess my gum health.
Since then, I have stopped grinding and snapping the band. This is one of many examples of how simply bringing awareness to a certain pattern or behavior can help me stop doing it. I have done this with activating my lower trapezoid muscles when previously had been over-using my middle and upper traps, exacerbating trigger points and pain. My right hip was coming out of place and there are certain ways of sitting or laying down that exacerbate this; after discussing with my chiropractor and continuing to notice and undo the pattern, I have mostly broken it and my hip is staying in proper alignment. Bodies are amazing!
2/14 orthodontist appt: She was again generally happy with my progress, though it is slow and she’s still unsure whether she can fix occlusion completely. Time will tell. I told her I was having some tooth pain on the upper right, which is not surprising because my facial fractures affected that area and it has been one area of concern for loss of teeth. Due to all the nerve damage and numbness in my face and mouth, it is difficult to assess using typical methods whether the teeth require a root canal or removal. So, she advised discontinuing top-to-bottom rubberbands on 2 of the teeth in that area and keeping only the one on the molar to see if that helps reduce the pain. She is also going to ask my oral surgeon if he thinks anything else is needed right now.
We also discussed that the recommended periodontist is not in my BCBSNM network and she recommended asking my dentist for a referral to someone in network.
Eating:
I have to be really mindful when eating and chew slowly and carefully, something I’ve mostly become accustomed to with all of my mouth challenges over the last 16 months. I think I got overexcited and didn’t do this well on Thursday 2/1 and had something stuck in my throat, causing wheezing, coughing, and discomfort. On Saturday evening (2/3), I finally coughed up a pretty big chunk of what I think is ground turkey. So weird to have this happen, I’ve never had something stuck and causing symptoms but where I could still eat other food. It felt like it was stuck in my trachea and not my esophagus.
This whole thing felt like a reality check of not being quite normal yet when it comes to eating.
After thinking about this issue more over several days and more eating practice, I realize I’m having general issues with salivation and swallowing and have a hard time when not eating saucy foods. When I wasn’t able to chew (essentially from 10/16/22 to 1/16/24), I thought it was normal to not have enough saliva because chewing creates the saliva… now that I can chew and I still don’t seem to have enough, it is concerning. I brought this up with the orthodontist on 2/14 and she thought perhaps the nerve damage in my face could be affecting my salivary glands and that I should see a rheumatologist… I’ve asked my PCP for a rheumatology referral (which I know will take a long time to get in with).
On a positive note - I ate a steak taco at a friend’s bday party, which was my first steak since jaw surgery. Yum! Then Patrick and I cooked steaks for dinner one night for a special treat :)
Eyes:
I tried calling the surgery scheduler on 1/30 and left a vm, then got ahold of them on 1/31 and set a surgery date of 4/5, with a pre-op on 4/4 and post-op 4/10. This is quite close to my birthday but still would rather get it done than keep waiting.
The more I think about my light sensitivity issue and not getting clear answers from my current eye surgeon, the more I feel like the second opinion oculoplastic surgery might be useful (this is scheduled for 3/13). I also wonder if this is a neurological symptom rather than an ophthalmological one, and realize I haven’t ever had a full neuro workup since the accident (that I know of). I’ve asked my PCP to refer me to the neurologist I have seen previously for head injury challenges.
My eyes have also started doing the weird thing again where one pupil gets way larger than the other. This is concerning and disorienting! Thankfully so far it has only happened when I am home.
General:
Home PT:
Getting back into the routine and feeling pretty good. Using my new booty bands, have expanded my reformer routine, back to doing step ups, single leg deadlifts, side stepping, planks.
Yoga has felt wonderful and I’m really happy with the weekly routine. Silv did a timelapse video of me at yoga on 2/2 and it is very cool to see my strength in action!
My pain levels remain about the same and I am in pain somewhere most of the time. I have been thinking about this a lot with the lawsuit moving forward and the question of “what is an acceptable amount of pain to have?”
My facial nerve pain and discomfort is still very present. I keep having moments where I think it’s better and then nearly right then, a symptom appears… maybe this means I have more space between the symptoms and so it is, in fact, getting better? Probably. Hopefully.
1/31: I had a chiropractor appt, followed by massage, and then the pain injection specialist. phewf! Even though it was a lot back-to-back it felt like a supportive arrangement of appointments. The injection specialist did a nerve block to relieve headaches and it has already made huge progress!
2/7: Injection specialist again for prolotherapy on 8 ribs and about 20 other injections. This, too, has already made great progress. 2/15 I saw him again for bilateral knee and right ankle prolotherapy and surrounding muscle trigger point injections. I hope to be back on a regular schedule with him every 2 weeks or so for the foreseeable future; he is immensely helpful!
2/14: ABQ upper neck chiropractor released me after 1 treatment (1/24) - I was shocked and excited to have such a positive report on an area that we were concerned about.
I had a hard talk with my Taos chiropractor about how even though my upper neck is better than we expected to see on x-rays, I am not yet ready to ski. This was hard to hear but also felt like a truth I had been trying to avoid, and letting it just be a real decision felt, in a way, like a weight was lifted. It is helpful to have the decision made rather than to keep hoping. Of course, I am still sad to miss out on another season of something I so deeply love, but I also do not want to put myself at risk of getting hurt again when I am still healing from my extensive injuries.
Skiing is also something Patrick and I love to do together and it is hard to continue having things we cannot do at all or cannot do like we used to! I know I am not letting him down - and he would never say anything like that - but it sometimes is hard not to feel that way.
I’m trying to push myself a bit more to be out in the cold even though I am very cold sensitive while doing it and it is also hard to adjust afterward, specifically my face, ears, and knees. I continue to hear advice from providers about how to handle it. I’m going to try ear muffs and leg warmers over my knees and see if that helps!
General updates and happenings:
Calvin and Silv visit 2/1-6 - so wonderful to have them here! It snowed about 30 inches in the ski valley over the weekend so we had a nice cozy time at the house enjoying each other’s company and our shared space. I miss them already!
2/4 I went out for a friend’s bday and felt great to see people; this was really my first time going out since jaw surgery. In the subsequent weeks, I slept even more than usual so it definitely took a toll on me to be out and stay up later than I typically do. Another good reminder that I am still deeply healing and to go easy on myself.
I’ve been trying here and there to do more around the house and it feels good to push myself but then unfortunately increases my pain and fatigue. Balance is important!
Lawsuit: continues to move forward with great progress every week; jury trial delayed to Nov 12.
It is hard to experience so much related to this that I’m not able to talk about with others (I’m so grateful I can talk to Patrick, my mom, and Calvin about it all). At times, it feels like I’m being ungenuine or not sharing my full self, because I simply can’t. And this could keep going on for quite some time…
Insurance: my dental related reimbursements are still in the works but my recent surgery denials have been processed as paid thanks to the help of a BCBS rep I’ve been assigned. I’m trying to figure out how to get future dental-related care covered through my medical plan up front rather than going through the appeal process for each provider.
Income: I still don’t have any support from social security disability benefits; I think the earliest I will hear something is mid April. I continue to not have the capacity to do work or be responsible for anything other than my healing and all that entails; I can’t believe I am still in this position! I am immensely grateful for all the support that has allowed me to be where I am today; thank you, thank you, thank you!
The past few months have been quite hectic, well really the past 16 months (!), but even more-so the past few with back to back surgeries, lots of ABQ trips for appts, depositions of us and the other side, gathering information and discussing the lawsuit, reading reports about me created for the lawsuit, more medical progress (and what sometimes feel like setbacks), more surgeries on the horizon, yeeeeesh - I continue to do well and handle what needs to be handled, most of the time with a smile and some humor, and also wonder if I am even really able to process all that is happening. And, there is still a lot of trauma and grief to work through, though often I feel like I have a block up so that I can keep moving forward - the right time will come for processing all the things and I don’t need to push myself because what’s happening right now is right, and it is all there is :)
On the horizon:
2/21: Taos Orthopedic First Appt
2/27: Calvin visit for a Meow Wolf concert
2/28: ABQ Orthodontist
2/28: Denver visit (travel back with Calvin :))
3/13: ABQ Orthodontist
4/4: ABQ Oculoplastic surgeon pre-op appt
4/5: ABQ Eyelid repair surgery #2
4/10: ABQ Orthodontist and Oculoplastic surgeon post-op
5/8: ABQ Orthodontist
TBD: Denver for mediation for lawsuit settlement
