December 17th, 2024 - January 26th, 2025
Tuesday December 17th - Sunday January 26th
General Updates and Happenings
What a time warp I have gone through since late November! 3 surgeries, all with additional travel for follow-up appointments and different recovery timelines and requirements, and then getting bronchitis for almost 2 weeks. I’m finally feeling better and getting back into some regular activity and exercise. I’m trying to get back in the shape I was in before all the surgeries, and it is hard to backtrack. I have many days of feeling energized and eager in the mornings and by midday I am exhausted, depleted, need to lay down. It’s frustrating!
Christmas was a nice mellow holiday for Patrick and I. We met some friends at the Taos Pueblo on Christmas Eve; we hadn’t been there for the holiday in several years and it was wonderful to be back. Christmas day we spent together at home, cooked yummy non-traditional holiday food (crab legs!), and met friends at Daleee KTAOS for trivia night. Trivia is not one of my skill sets but it is fun to get together with friends and to support our friend’s business at Daleee.
Friday 12/27, I started feeling sick and ended up with bronchitis for almost two weeks. Patrick and I spent New Years Eve watching Godzilla and eating pizza and were in bed by 10:30 :) I like low-key NYE celebrations at home regardless of whether I am sick or not. We were happy.
I was still sick until early the first week of January so had to miss a party to celebrate Patrick’s youngest brother and his wife’s first baby on the way! It is hard to keep missing things… I’m happy to finally be getting back in the groove of catching up on my weekly appointments, going out with friends, and feeling up to cooking and doing more around the house. I’m getting back into exercise which is also feeling very good - even back to playing volleyball! Patrick and I made a quick 24-hour trip to visit dear friends in Durango on 1/18, and it was so wonderful to catch up, though we were exhausted after getting back.
I’ve continued reading A LOT and enjoy the escape it provides, stories of other lives, and connecting the characters’ feelings, thoughts, and experiences to my own. I read most mornings on my heating pad in the sunroom, then meditate with my legs up the wall and a sandbag to help stretch out my calves and work on ankle mobility, and then begin my day. It is quite yummy.
I still struggle with feeling exhausted and fatigued and in pain in several places throughout my body all of the time. I know it is a combination of my body working very hard every day to heal, as well as the emotional and mental toll of everything I continue to have to navigate. Life has generally felt harder on the heart these days, though we power through… this may just be what I can expect to experience on some level for the rest of my life, and I am coming to terms with it slowly but surely.
Financial Status
Disability benefits: I’m finally getting the attention of the Social Security office, and they are scheduling independent medical exams to help with my case. It is daunting and scary to have more appointments, especially with people I do not know. The system is odd because they simply send you an appointment time without checking if you are available and deem it “mandatory.” My first appointment was for a General Medical Exam on December 28th; what a crazy time to schedule a mandatory exam! Between the holidays and without any consideration that you might be traveling or spending time with family. I declined this appointment because I was still healing from multiple surgeries, which seemed like good enough reason to not attend a mandatory exam. I ended up also with bronchitis starting that morning so it was a good thing I had declined. My next appointment is Tuesday January 28th, for a Mental Status Exam via telemed. I’m expecting another General Medical Exam notice to come soon.
Victim’s Compensation Fund: no update; I reached out in late Oct and late Nov and finally heard back right after surgery. I followed back up on January 15th and have not yet heard anything.
HSD Benefits: It has been a tremendous help to have SNAP benefits to help with our monthly food costs, we’ve submitted our interim report to continue benefits in 2025 and waiting to be confirmed.
Other financial: I met with my financial advisor and can continue taking monthly distributions from my retirement accounts to help with monthly costs. I’ll have depleted my most significant of the two accounts by July, and then will have the other account to get me through a few more months, but after that, I’m going to have to figure out another solution. What a toll this has taken on everyone! The support I have received has been tremendous, from my family and friends, from my providers especially those who are not currently charging me but will get paid back when the lawsuit comes to closure, and from my mom who continues to help me monthly. Having this big of a ripple weighs on me at times and I’m also so grateful for the community I have.
I finally got the bill for my initial ambulance ride taken care of! I had been getting calls from a collections agency on and off over the last year and a half, thought it was taken care of when I stopped getting calls around December 2023. Then the bill and collections agency resurfaced again in October 2024. What a crazy situation! Working with my fantastic patient advocate over the last several months, we finally got the bill dropped.
Lawsuit: The trial is now in October of this year, and things continue to progress, but it sure feels slow…
Medical Updates
Surgery Healing
Removal of L arm plate (11/26): Recovery photos here
Recovery: My arm has been feeling much better! I have no pain with volleyball and very limited with typing as I did before. I have some restriction and pain along the scar, occasional wrist pain, and continued intense stiffness and restriction in my finger mobility.
12/27 Surgeon Follow-Up: positive report with no restrictions, prescribed OT to see the Certified Hand Specialist I worked with before surgery.
Next steps: I’m scheduled to start seeing my OT again on 1/30, though I just learned that my new insurance plan does not include OT, so I am figuring out what to do. Always something!
Removal of facial plate (12/6): Recovery photos here
Recovery: Congestion and inability to blow my nose was frustrating but resolved after my post-op appointment. I have had on-and-off soreness in my upper gums at the incision site that has fully improved by late January.
12/19 Oral Surgeon Follow-up: very positive report and great appointment; this was my first time meeting the surgeon outside of pre or post-op in the surgery center, and it was lovely to have some time to connect. She asked me many great questions about my general recovery process and next steps, which made me feel cared for and like she is genuinely a part of my team - very tuned in. I told her about my discussions with the facial plastics and reconstructive surgeon in Co Springs, and she had a few surgeons she recommended in ABQ, which makes things easier for me to coordinate; I went ahead and got referrals.
My jaw and teeth are very stable even with removing the plate, the sinus smell is gone (yay!), and there’s no need for me to make a follow-up appointment with the oral surgery team until my braces come off and then we will assess if anything else is needed. She trimmed the sutures that were hanging down and getting caught on my braces; they weren’t doing anything anymore anyway. There’s one deep suture where the plate attached at my maxilla that didn’t disappear until this last weekend (1/20).
On 12/29, while I was sick with bronchitis, my upper gums started to become super sore! It felt almost like a blister was starting to develop and is concerning because it is close to the suspect tooth on the top left side of my mouth… is it abscessed (dying and becoming infected)? The surgeon did say that my incision might become more inflamed before it calms down but because of the tooth concern, I decided to reach out to my orthodontist for advice and she connected me for an appointment on 1/8 when I was already coming to town to see her too.
1/8 Oral Surgeon follow-up to assess wound healing: my incision from the surgery is healing fine, it is the suspect tooth I was worried about that is a problem. She thought it would need to come out and likely do bone grafts where the tooth and unhealthy bone are removed but wanted me to get a 3d x-ray at the other oral surgeon’s office and get his opinion.
This was a very hectic day seeing my oral surgeon, finding out I might need another surgery, going to the orthodontist, and then getting the 3d x-ray at the other oral surgeon’s private practice office. It was helpful to see the mouth-related doctors back to back, but it also really took a toll on me; I did not feel well and even threw up from the stress! The appointment with my orthodontist went well and we continued making adjustments and hopefully only have a few more months left but we shall see!
I’m grateful for my Orthodontist’s willingness to text with me and help me figure out next steps and who best to communicate with in the oral surgery team. I have two oral surgeons who work together at UNM where I have surgery, and one of them also has a private practice which is where I have had most of my regular appointments. With the two offices and two providers it can be hard to know where best to turn. They are both wonderful as are the staff at both offices, it can just be unclear at times who is my primary.
NEW ORAL SURGERY - 4/4/25
I expected to hear quickly after 1/8 as I had the 3d x-ray completed that same day and they had a team meeting on Friday 1/10, but as of Monday 1/13 I hadn’t heard so I reached out to my Orthodontist again. She did some texting with the team and let me know they would call me soon to discuss the procedure and schedule. I had been checking my UNM portal regularly to see if anything was submitted, and on 1/15, I saw that I had been scheduled for surgery on 4/4, and it was “confirmed with the patient,” but I hadn’t heard from anyone. From the form in my portal, the surgery will be outpatient with general anesthesia and include tooth extraction and bone grafts from my hip.
As of 1/23 I have not heard from them! I reached out via email on 1/21 and again on 1/24 to let them know I’ll be in town 1/29 to see my orthodontist in case I should get in with one of them to discuss next steps. Fingers crossed!
Removal of L ankle hardware(12/12): Recovery photos here.
Recovery: I removed the bandage and finally took a shower on 12/19, which felt great. I have been working on range of motion, and continuing to elevate and ice. My nerves have not yet fully woken up and that’s been challenging: at times, I can’t feel my shin or top of my foot and big toe at all and other times I have a burning or constricted sensation that is very uncomfortable. As of 1/23, I’m still having a lot of nerve issues from the knee down, which are frustrating but not unexpected. I’m working on desensitization and a few of my providers have ideas for other ways to support getting the nerves operating again so I’m excited to see what the next few weeks bring.
12/27 Surgeon Follow-up: Positive report, she was not surprised by the nerve sensations I continue to experience and thought my range of motion was great. I asked to see the x-ray and was shocked by the number of screws still in my ankle! Several of the screw heads broke off and the screws were too embedded to warrant trying to get them out. In a way, it is positive because my bone heals well and also is weird to have so many still in there.
Next Steps: She referred me to PT which I started again on 1/2. We’re working on strengthening my toes and ankle, tissue work on both legs and stability exercises for proprioception.
Hardware art project: I have received so much hardware these last few weeks I have a fun art project idea incorporating dried flowers from our garden… we’ll see what comes of it!
Eyes
Vision: no changes, I am still not comfortable driving at night and often have difficulties with sunlight and indoor lighting reflections.
Dryness also continues to be an issue and I continue to use drops many times a day and gel at night to keep my eyes moist. My eye dr gave me a sample of a prescription eye drop that might help with dryness and I think they did help but have not yet followed up about getting a prescription; she did mention it is a very expensive medication.
For weeks I have been calling back and forth between my eye doctor in Taos and the UC Health Neuro Opthalmology Department trying to get my records sent so I can get an appointment. Finally on 1/3, I heard that the records were there and in review by the doctor. I followed up on 1/21 and heard that I had been denied because somewhere in my records, it said I had seen an NM neuro-ophthalmologist, which isn’t true. So, now I’m working on getting that cleared up so I can continue moving forward with getting in at UC Health!
Other Orthopedic
Knees
They’ve continued hurting a lot, though with my recent back-to-back surgeries and being less active, they were accordingly less noticeable. I have pain when I go from standing to sitting, but I didn’t feel the regular dull ache that I felt when I was more on the go. Post ankle surgery I started to feel more left knee pain again especially when lifting my leg. Now that I’m back to more exercise, they’re both back to hurting quite a bit.
My chiropractor’s office is offering me a dry needling treatment to see if it can help with bilateral knee pain. I’ll hopefully start on 2/2.
R Hip
I’m unsure how much the cortisone hip injection worked as I am still having regular instability and pain, though just like my knees, with less activity, my hip was doing better. Even using crutches for a few days post-ankle surgery and putting most of my weight on the right leg, my hip managed better than I expected.
My orthopedic doctor referred me to a hip preservation specialist in Boulder, and I’ve had to get my referral resent as they didn’t have it on file when I called in the last week of December. I had my referral resent again by the Taos Orthopedic Dr Office and also faxed it myself. I followed up the first week of January and will see him in late Feb - yay!
Now that I’m back to volleyball and more activity, my hip is unstable and painful most of the time. Very frustrating but also good information.
PT: it was already difficult scheduling in November, and then, with all the surgeries happening, I canceled my December appointments. Even though I was sick, I was eager to get my left ankle evaluated and see if there were other exercises I could be doing to improve strength and rehab more effectively. So, I had my first appointment back on 1/2 and have been going weekly since. Feels good to be back!
I also generally feel out of shape with all the rest required with three surgeries and bronchitis - almost 2 months total - and have been doing this great 7-minute workout from WashPost.
General
Lingering Bronchitis: Starting on 12/27 when I was driving home from my surgeon follow-up in ABQ, I started to feel tightness in my chest and some wheezing/coughing. It got progressively worse overnight and Saturday, 12/28 I decided to have a telemedicine appointment with urgent care in Taos. This is the only option in Taos for urgent care appointments with my insurance, ugh. They said it sounded like bronchitis and possibly caused by the flu virus which was going around , so prescribed me prednisone, cough medicine, and flu virus 5 day course. On Tuesday 12/31, I was still feeling really sick and called my PCP office to see what they recommended; they suggested going to the ER if not better by that evening or the next day. I would rather be sick and tough it out at home than go to the ER around New Years! I waited it out and 1/2 got a telemed follow-up with my PCP office. They wanted me to go get a chest x-ray to rule out pneumonia so I spent the afternoon doing that; luckily the x-ray was clear but she prescribed me more prednisone and a 10 day course of antibiotics. YUCK
Bodywork:
I love my people! What a wonderful and supportive care team I have; truly do not know what I would do without them. I am happy to get back into a weekly groove of seeing all of my providers and helping my body calm down post-surgeries. Now that I have, I see how important it is to have the support that I do, which makes it hard to plan trips for appointments and especially otherwise!
In one of my appts, my provider shared that she has discussed with several of my other providers how my body is unique in its ability to integrate and heal, and that they just feel very honored to be a part of my team and get to work with me (and my body). Even with this amazing healing power, there seems to be a roadblock due to trauma and triggers that are subconscious. Every time I have a surgery (or a stressful time with the lawsuit, for example), my body goes into protective holding patterns that are in ways, a step back from the progress we had made. Feldenkrais is a modality that helps your body unlearn such patterns, and we have discussed this in the past - I think it is time to pursue this further, even though it will be an out-of-pocket cost. If we can make progress undoing the holding patterns before the next surgery in April, it will be a good test to see if it’s helping!
Finally got in to see the pain injection specialist on 1/22 and we did an occipital nerve block and trigger point injections in my neck and shoulders; this seems to be the first thing we go to after any surgery because it gets all flared up again! This is part of the pattern my other providers have noticed and he agreed that Feldenkrais would be a worthwhile modality to try.
Mental health:
I got in for another round of ketamine group therapy in February and March; I’ll have to miss the April session if my next surgery really is scheduled for the 4th. I’m happy there’s another group to attend!
I’m back in regular sessions with my therapist and again, so grateful for her support and care.
I want to reach out to my providers about the antidepressant dosage and try possibly increasing it a bit.
I’ve felt much more extreme swings in my mood and energy levels than I can remember experiencing before and at times I feel like I’m either on a big high or a super low. The start of a new year and continuing to be stuck in the hampster wheel does not feel good; I am burnt out. But I also know how to take care of myself and give myself grace more than I ever have in my life.
My digestive system continues to be super wonky and hard to regulate! I’m using all the tools I know well to try and stay regular, but it is a challenge! I tend very easily towards constipation so going through all this stress sure takes a toll.
On the Horizon
Getting back in the groove of weekly appts in Taos: bodywork, pain management, myofascial chiropractic, PT, behavioral health
Weekly meetings with legal team for civil suit
1/28: Mental Status Exam for disability application
1/29: ABQ Orthodontist
1/30: OT/Certified Hand Specialist for post-plate removal surgery assessment and treatment plan
2/2 (hopefully): start dry needling treatment for knee pain
2/7: Ketamine Group Therapy
2/8: General Medical Exam for disability application
2/13: ABQ Plastic Surgeon
2/19: ABQ Orthodontist
2/20 (hopefully): Boulder Hip Preservation Specialist
2/22-26: Little vacation for Patrick’s bday!
3/6: Dermatology follow-up
3/7: Ketamine Group Therapy
4/4: Oral Surgery at UNM
TBD: Denver Neuro-Ophthalmologist
