I went out today for the first time since surgery! Just to Wegmans and back (because it’s the best place on earth). It was hard but it felt good! It was my first time using an electric wheelchair. (First pic is my mom’s attempt at getting both me and the Wegmans sign in the frame). I was less self conscious than I anticipated, though I was surprised at how many people actually stared. Even when they’re trying to be discrete. I see you eyeballin’ me 👀 Even in 2019, society can’t seem to be comfortable with the idea of a younger person in a wheelchair.
I’ve been at my parents house in upstate NY. They have been great. I’ve been navigating the world of disability and insurance and tuition reimbursement all from a bed in my brothers old room. I’ll likely be here until mid-December. Matt has been holding down the fort with the girls. Bless him 🙏🏻
Recovery has been going well. The first 24 hours the pain was pretty excruciating. But at this point, it’s handled well with rest, elevation, and Tylenol. I’ve been taking all my supplements, including Zinc, Vit C, Collagen, and Ligaplex. I’ve been drinking lots of organic bone broth. I’ve also been sleeping about 10-12 hours every night. I’m leaning fully in to this season of healing. I’m grateful for the space to do so ✨
WE DID THE THING! Surgery went great- no complications. And I got discharged the same day! It seriously couldn’t have gone better.
Surgeon said I had really significant tears in my hip and free floating cartilage that was causing my painful “catches.” He also did an osteoplasty where he shaves down/smooths part of the femur to prevent it from damaging more cartilage in the future.
We had to be there at 5am and the kids woke us up several times last night so I’m beyond exhausted (as evidenced by this lovely picture). BUT I’m on the other side, finally. I’m in a great deal of pain, but it’s been a big day with little rest. I’m headed upstate to my parents house to recover for a few weeks in a peaceful environment with lots of support. Tired but happy 🖤
Pediatric geneticist was great. She acknowledged Anona is hypermobile, but said she doesn’t see any risk factors of the more dangerous types of EDS. Since theres no genetic marker for the hypermobile type anyway, she just wants an ECHO to make sure her hearts good, and then follow up in a few years (a lot of kids are super flexible at this age so it can kind of blurry diagnosis). But if anything changes in family history-like someone dies of an aneurism, to let her know right away. She was thorough and also kind. And I feel reassured there’s not a more dangerous type of EDS amongst us!
The cardiologist for my clearance was also super nice. He called me “fascinating” (as many have before him) and was humble enough to tell him I was teaching him new things. I’m always impressed and grateful when a doctor is humble enough to tell you when they don’t know particulars about a diagnosis.
We have a new date! I need to get a cardiac clearance next week (because my POTS has been all over the place lately) and more pre-op labs. But, assuming I’m cleared, I’ll be getting my FAO on Monday 11/25. With so many things up in the air, I’m cautiously optimistic, but excited to have things moving again.
The anesthesiologist I spoke to was great.
After discussing the quickest options and we both agreed the major hospital was the safest option (even if it’s not the soonest one) he said: “I mean we could technically risk it and do it at the speciality hospital this Monday, and there’s a 99% chance that everything will be fine. But it’s better to be safe and do it the following week at the main hospital”.
Me: “Well if there’s anything that I’ve learned, it’s that I’m always that 1%”.
Him: “Ya know, reading your chart, it really sounds that way.”
I cried a lot today. Surgery on Monday is postponed. I went to my pre-op appointment yesterday. The intake doc was super nice, but after looking at my complicated health history wanted me to meet with the anesthesiologist to discuss my cervical instability and chiari malformation.
The anesthesiologist was also wonderful. He was well informed on EDS, Chiari malformation, and cervical instability. However, he explained some things to me that I wasn’t aware of. To do my hip surgery they would generally do an epidural. But I’ve been diagnosed with Chiari since my last hip surgery and it is contraindicated because it makes chiari worse. (This explains some things after my last hip surgery). If they can’t do an epidural, the other option is general anesthesia. To do that, they need clearance for me to be intubated. Since I also have cervical instability, it can complicate the process/risks of intubation.
Where I was supposed to have the surgery done was hospital that is mostly outpatient. But now I have become a high-risk patient. They’ll only do the surgery in a major hospital where I would need to stay for a couple days for monitoring. However, they won’t even do the surgery until I get clearance from my neurosurgeon that it is okay to intubate with my cervical instability.
SO, I called my neurosurgeon. They said they should be able to send a letter of clearance, but the neurosurgeon isn’t back in the office until Monday. So a clearance letter won’t get to my hip surgeon until Tuesday at the earliest.
I truly do appreciate that they are being cautious, and I’m grateful that the anesthesiologist knew so much. Honestly though, I just feel really stuck right now. I can’t get my life back together until I get this surgery. I feel like I’m on a hamster wheel just running in circles for nothing. Also, this whole process has made the seriousness of some of these diagnoses really sink in.
Intellectually I know this was a Godsend. The lack of education from some of the docs up to this point could’ve put me at serious risk. For now though, keep my heart in prayer. I’m feeling frustrated, and inpatient. And anxious. So anxious. I’ll update when I have a new surgery date
I fell down a flight of stairs yesterday. My already painful and vulnerable body just got a lot more painful and vulnerable. It was a super wet morning. I was leaving a friends house after having coffee. We had watched another kid slip on the sidewalk due to the slippery leaves. As I was leaving, she said “Be careful on that sidewalk!” And we laughed as I took my first step off her porch only to go head first the whole way down. Oh the irony.
I’m okayish. Nothing is broken. But I was holding on to the railing, and stretched my whole right arm and right leg/hip in a way that should not have been. Then I came down hard on my left side, banging my other hip, knee, ankle, and ultimately landing on my very newly surgical left wrist. I am okayish. But I am in a lot of pain. And frankly, the whole thing was really scary.
It’s hard living in a body that is easily damaged. A regular person might have taken that same spill and been fine. But I can feel my shoulder where I had the previous labral tear is not doing well. My right hip, which is supposed to be my “good” one, got stretched in an unnatural way. I couldn’t walk on it yesterday. Today I can, but it feels very unstable and painful when I move it in certain positions. My knee sounds like popcorn. And my wrist- my poor little wrist. I iced it a bunch yesterday and it did help, but this is definitely a set back.
I put something about this on my IG stories yesterday, and boy did y’all show up. Words cannot describe how cared for I feel by all of you. Sincere shout outs and gratitude for those who have helped support us with childcare, prayer, food, funds, phone calls, texts, domestic duties, and love. Thanks for being our village.
My wrist is healing slowly but surely, though definitely not as quickly as the surgeon had expected. He said it was a two week recovery, but with EDS your body takes much longer to heal. Pain is still there, but swelling has decreased. My range of motion is pretty limited, but getting better every day.
Truthfully though, I’m pretty sad and feeling defeated. I think appropriately so. Recovery takes patience, grace, and adaptation. I’m restless. I want to get back to my life. I want to be able to go for hikes and play with my kids without caution. I want to get rid of the guilt I have for not being able to show up for my family as I want to. Intellectually I know this is not my fault, but guilt doesn’t really care how you feel intellectually. I wish I could internalize all that I know intellectually, but it’s a process and I’m well along in my journey.
I’m actually grateful for these feelings though- for my ability to internalize and articulate grief and sadness. In the past, I’ve disassociated from many of my emotion following my health challenges. I’ve discounted and dismissed myself using the phrase “We all have our burdens to bare, this is mine.” Or “Someone somewhere always has it worse.” I couldn’t connect with myself. I couldn’t mourn my old life as my capacities and abilities changed. I was called resilient and strong because I seemed unfettered by my health challenges. I do believe I am resilient and strong, but I don’t believe that is embodied by an outward presentation of happiness and/or stoicism. Strength and resiliency can be present in the face of sadness, struggle, and depression too.
Accessing grief and depression is hard for me, and so when I finally get there, it’s almost like an accomplishment. Here I am! I made it! I want to lean into the discomfort because it’s authentic, it’s appropriate, it’s healthy.
If your loved ones are going through something challenging, try and meet them where they are at. Don’t make them feel like they are failing if they aren’t chipper. Don’t tell them “everything happens for a reason.” Just show up, sit beside them, and join them in wherever they are in their journey 🖤
Saw my hip surgeon today for results of my arthrogram. I have a detached labrum with a large tear. Surgery is 11/11. He wanted to do it sooner, but he only operates on Mondays. He has two locations that he operates, but he likes to do his osteoplasties at a specific location and he’s only there on certain Mondays. So we’re stuck with 11/11. • Matt kidnapped me today and took me to the Arboretum for some much needed fresh air. It’s not forest bathing in the Wissahickon, but they have loaner wheelchairs and paved surfaces so it’ll have to do. It was good for my soul. • Recovery is going (mostly) well. But this weekend was tough. It is hard not to overdue it at times, especially with two high energy kids running around the house. It’s also strange being home but not being able to contribute. I’m just sort of hobbling around trying to not get accidentally hurt. By Sunday night I was feeling pretty depressed. • Intellectually I know my productivity does not define me. Nor does my job. But this has been a really huge shift for me and a hard one to internalize. In addition, I’m missing out on all my favorite autumnal activities, and it’s kind of breaking my heart. • Ultimately though, I’m learning resiliency, flexibility, and vulnerability. I listened to Brené Browns TED Talk on “The power of vulnerability” and it really resonated with me, especially in the season I’m in. Learning how to be gentle with myself while seeking opportunities for connection throughout my situation. It’s a whole process of grace, compassion, and balancing boundaries with vulnerability. Your baby girl’s growing up 🍁 . . .
FAI #hipimpingement #labraltears #askforhelp #emotionalhealth #ganglioncysts