March 8th - 24th, 2024
Friday March 8th - Sunday March 24th
Medical updates:
Mouth
3/13 orthodontist: we updated the top wire to a stronger wire again and now are able to use a stronger top to bottom rubber band to try and address the crossbite. We will continue to increase and adjust the set up over the next few months. This was my last 2 week appointment and now we are switching to monthly which is great. We discussed the tooth pain that continues on the upper right side, and her and my oral surgeon discussed that because I am seeing a new dentist soon (3/28) and he will take x-rays, they will wait to see his results instead of making me take them multiple times. She is concerned that the back molar on the upper right may be abscessing and we will be able to tell from the x-ray.
Eyes
3/13 oculoplastic surgeon 2nd opinion: she was very caring, thorough, and honest. She assured us that we are in the right hands with who I have been seeing for surgery so far and agrees with the plan for a second surgery. She did some level setting in that I need to lower my expectations/hopes for “normalcy” as I will never have that, and at the same time honored what I have been through and how amazing my recovery has been so far. She explained that because younger people heal better, scar tissue can be more difficult to address as it is more likely to develop - so, in the context of my eyelid, this will likely be a battle for the rest of my life (in her words, I need to be ok with three steps forward and one step back).
We talked about the light sensitivity and I explained that I felt it wasn’t addressed fully and felt a bit minimized by the other practice, and she said it’s likely because this isn’t their speciality, their specialty is surgery and not the eye function. Also, the light sensitivity and onset of anisocoria are likely neuro-opthalmological issues and unfortunately there is only one neuro-opthalmologist in the state and he is very hard to get in with. I told her I had a referral to a regular neurologist and she thought that was a good approach.
She made me feel heard and seen and at the same time, I left feeling a bit down by the fact that I may be dealing with neurological issues that are difficult to address. I had a feeling this was the case and it felt good for a dr to say it straight up but also a hard reality to accept.
General
Neurology: I am still waiting to get in for a neurology evaluation. I originally asked for the referral on 2/13, followed up on 2/26 to learn that the referral was not sent to the right place, so again reached out to my PCP office to have the referral resent. On 3/13, I followed up again and after spending an hour on hold, learned again that the referral was not received. I spoke to a very nice person who said they would follow up with my PCP office for me, but have yet to hear back from them. I will call again tomorrow…
Pain: I continue to have new and old pain patterns showing up. For example, my chiropractor/myofascial pain dr discovered new layers of fascial and muscle tension, especially on left outer thigh where I have a lot of scar tissue and extensive tissue damage due to the open/compound femur fracture. She also found tension on the right thigh, neck, and lower back (quadratus lumborum). My arm continues to hurt where the plate is secured to my ulna and also at the elbow and wrist. I ave been given new exercises to help with arm functionality and pain and will see a certified hand specialist/occupational therapist on 3/26.
Great conversation with my massage therapist: how can you open your heart when what you have experienced (things no one else can really understand) has shown you a lack of safety, immense difficulty, need to protect it? Might be inclined to close off but it is misaligned with the beautiful, sunshine, brightness that is your being. A tension there. Where do you go when you have the most pain, physical or otherwise? How can you open your heart in these moments?
After working on me, she acknowledged how deeply she felt the life and integrity present in my body 😊
With all the new and old pain patterns that continue, I keep receiving new recommendations for additional exercises to do daily (or at least regularly) - it is a bit overwhelming!
3/21 I saw a new PT for bilateral knee pain. It was a great appt, she did a full eval and it was different than what my other PT did (naturally, because humans are unique 🙂). My patella are tracking better than she or I (or my orthopedic surgeon, for that matter) expected. She thinks knee pain certainly could be caused by the way the femur rods were inserted and even suggested considering/discussing removing them if pain continues. She also thinks my extreme hyper-mobility is a factor as well as possible over-strengthening of my front body (quads, esp) and not enough focus on the back body (hamstrings, esp) - this is common for women in general and increases risk of ACL injury. So, we modified and added a couple more exercises to my regimen which I hope to try as soon as I’m feeling up for it. I’ll see her about every other week.
I liked my old PT but having a fresh pair of eyes feels good. This new PT works very well with my chiropractor/myofascial pain dr, pain injection specialist, and orthopedic surgeon - having a team that works well together is so valuable!
General updates and happenings:
Yoga again on 3/8, so yummy to practice in community and get out of my head! I skipped 3/15 and 3/22 due to not feeling well. Hope to get back at it this coming week.
Patrick and I were supposed to go to Durango for the weekend of 3/8 and I decided to stay home as I was feeling full and needing to settle after a week away in Denver. I also wanted them to enjoy skiing and not think about leaving me behind! Friday 3/8 I went out for a little ladies night which was also very yummy and fun.
On Friday 3/15, I started wheezing a little bit and feeling very fatigued. I was worried I was getting bronchitis, something I’m prone to and tend to get almost annually. I went to urgent care Monday 3/18 and unfortunately there was no provider present but I was able to do a video call with a PA. The only other option would have been to go to the ER, which I didn’t want to do. The provider deferred to me for a lot of the appointment, which felt good in ways, but also made me a bit nervous given my history with bronchitis and knowing it is difficult to know the root cause. He prescribed me a z-pack, prednisone, and cough pills (benzonatate), which I have been doing since - a week later I am still not fully recovered. Ugh.
I have been feeling a tension already, knowing my eyelid surgery is coming up and I will be in another period of rest and not able to keep up with my workouts. Getting sick and having another setback when I hoped to be in really good shape at the time of surgery, is hard to sit with. Continuous good lessons in accepting what is and taking care of myself.
Patrick and I had plans to go on the family trip to Nathrop 3/23-26 and I decided to skip this too, given I am sick; it is hard to keep missing out on things! And, at the same time, feels good to listen and follow what I need.
Insurance: I finally got my dental-related care covered through my medical plan - it took a dedicated BCBS team member from October to March to figure out how to make this work. I am so grateful! I have received close to $10,000 back. There are still a few moving pieces for me to figure out with the dental offices, but I am in a much better place than I have been. It is kind of hard to believe.
I am so lucky to have received this support, and it is only because I have a family connection to the CMO of BCBSNM who was able to get my case noticed. It is hard not to think about all the people who are likely struggling with getting their needed care covered and don’t have the connections or resources to figure it out. It is simply unjust.
Disability Benefits: No update since last speaking with someone on 2/27/24… it has been almost 14 months since I applied. I will likely follow-up with week again, if I have the stamina to do so.
Work: I was approached by a friend of a friend to help with a grantwriting project and after sitting with the idea for a few weeks, I realize that I still do not have the capacity to take on work in a way that feels supportive and good for me. This remains hard to swallow, and again, good to do what is right for me.
On the Horizon:
3/26: OT/Certified Hand Specialist
3/28: New Dentist in Angel Fire
3/30: Meow Wolf with friends
4/1: Bday 🙂
4/3: Orthopedic Dr f/u call
4/4-5: ABQ for Oculoplastic Surgery (eyelid take #2)
4/4: pre-surgery appt
4/4: photoshoot of scars w a friend (for lawsuit)
4/5: surgery day
4/10: ABQ Orthodontist and Oculoplastic Surgery f/u
TBD: neurologist
