Jan 20th - 28th, 2024
Saturday January 20th - Sunday January 28th
Medical updates:
Mouth:
My mouth has become a lot more comfortable as I get used to the constant top to bottom rubber bands. My midline is pretty close though still off a few millimeters and I am not seeing a lot of improvement in the crossbite (mal-occlusion). I am eager to see what the orthodontist says in my next appointment on 1/30.
Chewing sure makes eating more fun and have enjoyed the freedom to eat more variety, though the mal-occlusion makes it difficult and I still have to go slow and with smaller bites (good practice for mindful eating!). It’s a funny shift (in many ways) going from not being able to chew well, to not at all, to now fully able to chew most things - I lost my enjoyment in food for what feels like a long time (in the grand scheme of things I realize it is not very long) that it is a big shift to think creatively and enjoy food again. Slowly but surely Patrick and I are coming up with exciting things to cook and eat out and it is really wonderful.
I am still having strange sleep behavior related to my mouth; it reminds me of the feeling I used to get when traveling and would wake up with sleep paralysis and my mouth wide open with no control over it. I am currently waking up with some combination of my teeth clenched, grinding the teeth that do touch, and with one of my top to bottom rubber bands missing. The missing ruberband is odd because all five rubberbands together create tension in my mouth so it doesn’t make sense to me that one would fall out on it’s own. I’ve been finding it broken and somewhere in my mouth, usually up in my gums. All of this makes me feel weird, like I’m haunted or something!
Eye:
1/24 surgeon follow up: I traveled to ABQ on 1/23, thinking I had a follow-up appointment with my oculoplastic surgeon, and turns out I had the wrong day. Thankfully it was 1/24 and I was already planning to stay the night with my cousins as I had another appointment 1/24, but it sure messed up my schedule and was stressful! After evaluating my right lower eyelid and discussing my vision challenges, he would like to do another surgery to further repair the lid. The inner part of the eyelid where he put a spacer graft is healing successfully and now hugging the eyeball, but the outer part is pulled away due to all the scar tissue in the area. He will do a skin graft to create more space for the eyelid to pull up by itself, and do a canthal suspension to manually pull the eyelid up from the outer corner. I’ll also have the stitch taped to my forehead for the first few days post surgery as I did last time. The current state of the eyelid is contributing to excess dryness, playing a role in my light sensitivity and discomfort. The surgery is not urgent, so I have flexibility to schedule and am waiting to hear from the scheduler with possible times.
He didn’t have much to say about the light sensitivity issue other than it is likely due to excess dryness of the eye, could be exacerbated by the dry climate of NM as well as my pre-existing condition of sjogrens. I still don’t understand why this would present itself post-surgery to repair something that exacerbates dryness, but there doesn’t seem to be any explanation. All I know is that surgery will likely help and I have to deal with it for now and use eyedrops and ointment to help in the meantime.
This is all hard to swallow though from the beginning we knew there was a possibility of additional surgeries needed, and I think that’ll just be the reality for the rest of my life. The area has such deep and widespread scar tissue, which will continue to be a challenge.
General:
1/24 Neck eval: I had my first Atlas Orthogonal Chiropractic appointment and had an upper cervical evaluation with x-rays. She didn't have enough time scheduled to do the full analysis of findings and provide a summary and treatment plan, but did see and adjust the misalignment in my upper cervical spine. She knew I was traveling back and forth from Taos and said that typically she would have me come weekly and that I should return when I can within a month; I will return on 2/14 to discuss my results and our plan and I may go sooner if I can swing it. She may have me start wearing a neck collar to help stabilize the neck after next appointment.
So, per both of my chiropractors, I am not to ski until my cervical spine is stable. Poo!
Knowing I cannot ski before I am stable, and that I am not scheduled to see her until 2/14 is a hard reality. After that, there are less than 2 months left in the ski season - so, realistically, am I going to miss the whole season?!
1/25 PT appointment: We discussed a few more exercises for me to progress to at home and scheduled a 1 month follow-up with the understanding that I may push it out farther if I don’t feel like I need to see her yet. I relayed my overwhelm with the number of appointments and that if it is between me getting in a workout at home and seeing her before I feel ready, I want to work out at home.
She disagrees about the way to address my neck instability, and strongly believes that strengthening the inner muscles of the neck is most important. It is hard to take in all the differing opinions! Either way, though, there’s work to do on the neck before I can ski - and I will address it from all perspectives.
She also thinks I should see a different orthopedic surgeon for my arm in Santa Fe and get in the with certified hand specialist at her PT clinic. I have been told by her front desk that it’s not possible for me to see a PT and the hand specialist due to insurance, and right now I don’t have the bandwidth to figure out. Plus, yes my arm and hand hurt, but it feels minor compared to everything else. I am going to see the new orthopedic surgeon that I’m hoping will manage all of my orthopedic needs and go from there.
1/26 chiropractor/myofascial expert appointment: my right hip stayed in proper alignment since last visit which is a huge win, though my right ankle was now out of alignment and needed adjusting - a nice reminder that everything is connected. We also looked at my arm because I’ve been having some pain, and there was some misalignment there too so she adjusted it and gave me some exercises to do regularly in hopes of keeping it in place.
We discussed the proposed neck exercises from my PT and she cautioned me that if not very careful, exercising muscles where I have trigger points can exacerbate them and cause more pain/disfunction. I am going to hold off on the exercises until we get things to calm down more with trigger point injections, massage, and another visit with the atlas orthogonal chiro in a couple of weeks.
We also discussed another risk factor for skiing, that is how proprioception (how the body feels where it is space) can be altered after injury and surgery, making risk of falls higher. Priorioceptors are located in the soft tissue and fascia, which is connected throughout the body. There is significant research about the effects of injury and surgery on proprioception, though of course, there isn’t any that she knows of or that I could find on someone with this many injuries… she’s going to ask around in her network.
Home PT:
It has been difficult to fit in 3 home workouts/week with my hectic schedule; I am working on striving for that goal and also not being hard on myself if I don’t get it done. I am doing other forms of exercise and movement that feel good and that is maybe just as important!
This is my second week in a row of going to a Friday morning pranayama flow class, which has been a lovely addition to my routine. I am thinking of adding more classes during the week, although it is difficult if they are in the evening because I am still not comfortable driving at night due to my vision.
1/27 Patrick, the pups, and I went on a 4 mile walk/flat hike! I struggled during the second half with a painful right hip and ankle, and throughout with keeping my sensitive face warm enough and protected from the wind. I woke up on 1/28 with very sore muscles all over, which in ways feels great, and also an angry right hip and ankle which doesn’t feel so great.
My pain levels have stayed higher since the deposition on 1/11, and even more-so after my Albuquerque trip and appointment mess-up (even though it worked out). My hackles and protective shoulder pattern is very present, painful both back and frontside. I’m having neck pain and headaches on and off. My right ankle and hip are bugging me, in addition to the regular knee pain I experience. And, I continue to have a lot of nerve pain in my face that shows up as shooting/stabbing pains, intense itching, or burning sensations that come at random and there’s not much I can do about it. When the nerve pain comes, it does feel good to just put my fingers on wherever the sensation is showing up - sending love, letting my face know she’s doing a great job, and that I’m here <3
One of my providers and I discussed my general overwhelm, and I brought up that I’m having a hard time knowing my level of saturation. We discussed how I can check my energy body by thinking through each of my current providers to figure out what is really working for me, creating a list of the must dos, want to dos, and things I can discontinue or put off to later. An inventory of sorts.
I loved this idea in principle but it has been kind of hard in practice; there isn’t much that feels ok to cut out completely though I am making an effort to spread things out with more intention.
Knowing after 1/24 about the possibility of another surgery on the horizon, an unknown trajectory related to my neck, and how this impacts my big “want to do” that is skiing - I feel immense grief at times when I look up at the beautiful Taos mountains and think about missing another entire season. But, she will still be there when I am ready, and meet me wherever I am.
Another provider was telling me how the energy body can extend up to 20 feet in all directions - I love this imagery for meditation, breath work, and dropping in while getting bodywork done. It makes me feel less lonely and more connected.
General updates and happenings:
I feel immense gratitude for everyone present in my life on this journey: family, friends, providers, animals. Thank you for checking in on me, asking questions and listening, making me feel loved, and giving me space. I have a wonderful network of providers that I see on a nearly weekly basis in Taos and continue to reflect on how lucky I am to have found such caring experts that I feel deeply close to and trust. Patrick and I have cultivated a healing and calming environment in our home, with our plants and animals, and I so enjoy just being and settling in our space. Sitting in our hot tub and looking at the sky or the mountains is quite the dream; we reflect on how lucky we are often. I could go on and on, just feeling the love and gratitude today.
When I was in ABQ 1/23-24, I stayed at my cousin’s house and was so lovely to catch up and spend time with them. I used to live with them when I first moved to ABQ and it is very nostalgic to be in their yummy space.
Lawsuit: continuing to move forward and make good progress; we are increasingly spending time working on this with the team. It feels more and more like there’s a light at the end of the tunnel!
Insurance: No update on dental-related reimbursements or possibility of needing to submit appeals for recent surgeries that were not covered. I will follow up this week.
On the horizon:
1/30: ABQ Orthodontist
1/31, 2/7, 2/15: Taos Pain Injection Specialist (it has been 3 months since I’ve seen him!)
2/1-6 Calvin and Silv are coming to visit!
2/14: ABQ Orthodontist and Atlas Orthogonal Chiropractor
2/21: Taos Orthopedic First Appt
TBD, hopefully 3/4: Denver for mediation for lawsuit settlement
