Feb 16th - March 7th, 2024
Saturday February 16th - Thursday March 7th
Medical updates:
Mouth
I got in to see a new dentist in Angel Fire with a first appointment on 3/19. Will be great to have someone closer to home!
I continue to have issues with swallowing and having enough saliva in my mouth; this issue will be assessed by the dentist as well as by a new rheumatologist (first appt 5/3), as it is possible the nerve damage and other facial trauma affected my pre-existing sjogren’s disease.
I continue to have pain in several teeth on both the upper right and left as well as the lower left; it is not constant in any one place, sometimes I feel nothing, sometimes I feel it everywhere, and other times in just one place or another. It is hard to tell if it is just from the continued jaw healing, from the braces and adjustments every 2 weeks, the top-to-bottom rubberbands pulling on my teeth, or something else.
Orthodontist 2/28: we increased the strength in my top wire which will hopefully continue to bring the top teeth into better alignment; top-to-bottom rubberbands, which we reduced in my visit on 2/14 to one during the day and three at night instead of three during the day and five at night, are staying the same. She is going to discuss my tooth pain with the oral surgeon and see what he thinks. I’ll see her again 3/13.
Still waiting on the right time to see the periodontist (gum specialist) and prosthodontist (implant specialist). My orthodontist brings it up nearly every appointment but doesn’t know if it is time yet. Hopefully she will also discuss this with the oral surgeon and give me an update on 3/13.
Eating is the best it has been since the accident, but still difficult and not always pleasant. I get tired easily and can’t always simply enjoy the food I want to enjoy. But, I am still enjoying it more than I have been able to in almost 17 months!
Eyes
I am still waiting to hear from the neurologist's office about scheduling an evaluation per my PCP’s referral. I followed up and discovered that the referral was not sent to the right place so reached out to my PCP to resend it… oh the never-ending coordinating on my part!
After 3 weeks, I finally received a message back from my oculoplastic surgeon about the eye dilation issue (anisocoria) that continues to happen on and off (photos here); he asked whether I am on any medication nasal spray or medication patches, which I am not, and said we will discuss the issue when I see him on 4/4 (pre-surgery day), and that he can refer me to a neuro-ophthalmologist if needed.
I’ve posted an outline of the process for my next eyelid surgery here.
General
New Orthopedic Dr 2/21: overall a great appointment, though a frustrating day!
It ended up being a horribly long afternoon going to this appointment, I was supposed to give blood right before my appointment as my iron level is too high but I got a call from the orthopedic office that their xray tech called in sick so I needed to go to the hospital to get an xray of my arm. I said ok, and that I hoped I could talk to the orhtopedic dr about more than just my arm but was told that he can only see me for one body part at a time (huge eye roll, but ok, I’ve heard this before). I cancelled my blood donation appointment and went to the hospital at 1 pm like they suggested, finally got checked in at 1:40 only to find out that they didn’t have an xray referral. I spent the next 15 minutes trying to get ahold of the ortho office, finally did, and they sent the referral. By this time, I had only 5 minutes before my ortho appt was supposed to start. I was finally leaving the hospital at 2:50, and arrived to my appointment an hour late. Then I had to fill out new patient paperwork and health history, etc., which is always slightly triggering. I also saw a disclosure on the paperwork that said they don’t accept patients currently in litigation and will not be involved in any lawsuit-related activities. I debated whether to talk to the office staff about this and decided to just sign that I understood their policy and figure out what it means later.
At about 3:30, I finally got in to see the dr and he is wonderful. He works well with the team of people I already see in town and we were able to discuss all areas of concern. He didn’t seem to know my history, despite compiling and sending records many weeks ahead of time, so I had to go through it all again - while frustrating, this is a pretty common occurrence that I’m used to by now. All in all, it was a very good appointment and I’m happy to have him on board. We discussed the following:
Left Forearm: I’m having more arm pain recently both in the area of the plate as well as in my wrist and elbow. He predicts that the plate will need to come out but is hopeful with elbow and wrist prolotherapy that the pain may calm down. I can’t get the plate out until 1 year post surgery which would be early June.
Right hip: I made him aware of possible labrum tear that my chiropractor is worried about; he is hopeful that with continued chiropractic/myofascial treatments and body awareness counseling that it will not need additional intervention. If it doesn’t calm down, a high tech MRI available in Santa Fe will be the next step.
Knees: We discussed that both knees likely have damage due to the way the femur rods were inserted under the kneecap (standard practice though can also go through the hip). He has referred me to PT specifically for iontophoresis and patella tracking/strengthening, 2x/week for 6 weeks. The left knee felt worse to him and has a possible meniscus tear. If PT and continued pain injection treatments including knee prolotherapy don’t help, I will need an MRI to assess further.
Next steps: we will check in via telephone in 6 weeks (4/3) and if knees are not better, he will send me for a bilateral knee MRI, we will continue to discuss the forearm hardware which can come out in June, and continue to check in about my right hip as needed.
Pain: It’s been awhile since I did a pain inventory so I began writing, and decided to include it here…
Knees: I continue to have knee pain pretty regularly, though it is not consistent and shifts in intensity and pain pattern from one day to the next and throughout each day. Both knees bother me regularly, with the left being slightly worse. On the left, I have more pain up into the scar tissue area on the lateral thigh where my femur broke through.
Ankles: My right ankle has not had pain since prolotherapy treatment on 2/15 (big win!), and my left has been aching only the last few days which is new.
Arm: I’ve had worsening arm/elbow/wrist pain for the last several months, possibly because I am using it more especially in yoga classes (which I should be able to do!). On 3/6 I had prolotherapy at my wrist and elbow (really in the tennis elbow tendon area) and trigger point injections in the forearm muscles, which will hopefully make a big difference. I’m also going to start seeing the occupational therapist/certified hand specialist in town; I was told I couldn’t see multiple PT/OT people on different referrals and after checking again with my new BCBS contacts, it sounds like I was given incorrect information and can actually do so - let’s hope it is a smooth approval process!
Face: I continue to have intense periods of nerve pain and itching sensations in my face but it is slowly but surely improving and less regular. Most of my face from the cheekbones down continues to be very numb.
Mouth: My teeth hurt in several areas most of the time, and get worse when chewing and when brushing my teeth.
Neck/shoulders/back: I continue to have pain and instability in my neck, shoulders, and back and work on this weekly with several of my providers. Some of the pain I believe is due to patterns associated with grief, feeling the need to protect my heart, disappointment, stress, exhaustion - these patterns are hard to undo completely with the continued trauma and stress of my recovery.
Mental/Emotional: I have been thinking a lot about my unconscious block that holds me back from digging deep and processing the trauma of this accident and recovery; there are many reasons to keep it there, the most significant of which I think is the analogy that I’m in the middle of a war and I need to keep going. I had a reassuring talk with my therapist about this block being supportive for me right now, trusting myself that I will know when the time is right to really dig deep, and that there is no need to push before I am ready. I was worried that some of the pain patterns are holding on because I am not allowing myself to fully process my trauma, and while that may be true, I feel reassured that it is ok and right for what I need now. The time will come.
So many new providers on the horizon!
2nd opinion Oculoplastic Surgeon
Neurologist
Rheumatologist
Dentist
PT for knees
OT/certified hand specialist for arm/hand
possibly coming soon: neuro-opthalmologist, prosthodontist, periodontist
General updates and happenings:
2/17 I went to a bday celebration in the ski valley which was my first time up there in the winter in 2 years! It felt great to be up there and see a bunch of friends. I’ll admit it felt funny and a little bit scary to drive up there by myself, probably just because I haven’t been in so long that it feels a bit foreign, but I was proud of myself and happy that I did it and the driving felt safe and easy - I made sure to leave before the sun went down so I could make it home safely. Then I had several friends offer to drive me to go out again in the evening and that felt very supportive and comfy! I was sure tired that evening and the next day I needed to lounge all day, but it was worth it.
2/19 Patrick and I went snowshoeing near Red River (photos here). We bought snowshoes several years ago and haven’t been able to use them much, and this first outing since the accident was so lovely! The accessibility to just walk around on snow in areas where you wouldn’t otherwise be able to is really wonderful. And, to my surprise, I wasn’t super sore afterwards!
I continue to go to yoga classes in town, often with friends, and am really loving it. It is hard to hear that it might be contributing to some of my increased pain, but it brings me joy and that is important too. Always the balancing act!
2/24 was Patrick’s birthday and we hosted his brother for the weekend and then went out to a nice dinner with his dad and fiance on Sunday. It was a really nice, family filled weekend!
2/27 Calvin met Patrick and I in Santa Fe to see Mindchatter at Meow Wolf. What a fun evening! We had a great time. Then 2/28 Calvin and I drove to ABQ for an appointment, saw some family, and drove to Denver to mom’s house - long day but really wonderful brother-sister time which we rarely get anymore! (Photos here)
2/28-3/4 Denver trip: It is always so yummy to be in Denver, stay at mom’s house, spend a lot of time with family, see close friends. A very dear and important family friend is going through some health challenges and I was so happy I got to visit with her. It is always hard on the heart to leave Denver and while it feels good to be back home, I miss the connections I have there. It was especially hard for mom, Calvin, and I to part ways; we have, and continue to, experience and move through so many hard things together! I’m very grateful for our relationships. (Photos of the trip here)
Insurance: Myy dental related reimbursements are still in the works and I continue to be assured by BCBS that I will get reimbursed for at least some of the $10,000+ that I’ve spent out of pocket. Fingers crossed.
Disability Benefits: I continue to wait for support from social security disability benefits. On 2/27, I got a call from them, and after figuring it out with her, we realized that I now have two applications (the one I originally submitted 2/2023 and the one that got submitted with udpated information on 1/2024). The person I was speaking to said she was from another state and had just got assigned my case that day… the NM backlog of applications is so bad they are pulling in other state’s employees to help. So, it sounds like my application is basically just getting processed and she is going to work on requesting all of my medical records from the updated provider list I sent in December 2023.
On the Horizon:
3/13: ABQ Orthodontist and 2nd opinion Oculoplastic Surgeon
3/19: New Dentist in Angel Fire
3/21: New PT for knees
3/23-26: Cabin in Nathrop w family
4/1: bday 🙂
4/3: Orthopedic Dr f/u call
4/4-5: ABQ for oculoplastic surgery (eyelid take #2)
4/4: photoshoot of scars w a friend (for lawsuit)
4/10: ABQ Orthodontist and Oculoplastic Surgery f/u
