New endocrinologist appointment today. Went pretty well. Lots of labs I’ll hopefully get done next week. Overall she was nice and thorough. She spent 1 1/2 hours with me. Following up with my Hashimotos disease- but she agrees my symptoms can’t all be explained by thyroid disease. Ruling out Hyperparathyroidism (based on previous abnormal labs), adrenal tumors/pheocromocytoma (based on symptoms), and getting clear catecholamine plasma levels which I’ve never had any doctor do before. Hurray 👏🏻for 👏🏻decent 👏🏻doctors 👏🏻…
I survived. This year has held adventure as well as a lot of loss and hardships.
TONS of physical therapy.
I was diagnosed with EDS, MCAS, CCI, hyperPOTS, and a few other things.
I went to California to visit wonderful friends and see Paul McCartney (!), my musical idol for decades.
I discovered two cysts in my wrists that needed surgery.
I visited my brother and family in Florida to welcome them there and celebrate my sister n laws birthday.
I took many walks in the wissahickon with my dog and celebrated the beauty of nature, stillness, water, and trees.
We discovered we needed masons to complete a very expensive chimney rebuild.
We also discovered we needed an expensive gutter replacement.
We found a new church congregation with some amazing people.
My hip stopped working. I had a torn labrum with cysts, a partial dislocation, and free floating cartilage. I got my 2nd surgery of this year.
My 6 year old needed doctor appts for migraines, anxiety, ADHD, and sleep apnea.
I learned to ask for help.
I applied for disability.
I started online courses for my School Nurse Certification.
We visited my 92 year old grandma.
My parents drove me back to Philly on 12/16 after recovering from hip surgery. It would be the last time I would see my dad.
My dad died unexpectedly 4 days before Christmas 💔
My husband and I still made Christmas happen for my 3 and 6 year old while planning a trip for my dads funeral.
I spent hours on end on New Years Eve with my siblings going through paperwork and getting affairs in order. Everyone developed a fever between 101-104 which we found out today is the flu 🤘🏻
This year may have been one of the most challenging of my life. I have hopes for 2020 easing up a bit. Enough for us all to come up for air. I’m sincerely so happy if this year was kind to you. But if it wasn’t, know you’re not alone. I see you. We’re there too. And we’re holding out a piece of hope for next year for all of us ♥️
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