/ game on \

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.”

Such a snowflake ❄️

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#FAI #hipimpingement #EDS

#ehlersdanlossyndrome #POTS #hyperPOTS #MCAS #mastcellactivationsyndrome #CCI #craniocervicalinstability #dysautonomia #hashimotos #chronicillness #spoonies #thespooniesisterhood #chronicillnesswarrior #CFS #chiarimalformation #butyoudontlooksick #invisibleillness #chronicpain

/ no surgery monday \

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

#FAI #hipimpingement #EDS

#ehlersdanlossyndrome #POTS #MCAS #mastcellactivationsyndrome #CCI #craniocervicalinstability#dysautonomia #hashimotos #chronicillness #spoonies #alopecia #thespooniesisterhood #chronicillnesswarrior #chronicfatiguesyndrome #CFS #chiarimalformation #butyoudontlooksick #invisibleillness #chronicpain #buildabridge #ittakesavillage

/ fallin‘ for you \

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.

Time to soak this broken body in Epsom Salts 🖤

#FAI #hipimpingement #emotionalhealth #ganglioncysts #wristsurgery #EDS

#ehlersdanlossyndrome #POTS #MCAS #mastcellactivationsyndrome #CCI #craniocervicalinstability#dysautonomia #hashimotos #chronicillness #spoonies #alopecia #alopeciauniversalis #thespooniesisterhood #kidsandchronicillness #chronicillnesswarrior #chronicfatiguesyndrome #CFS #chiarimalformation #butyoudontlooksick #invisibleillness #chronicpainawareness #chronicpain #buildabridge #ittakesavillage

/ it’s okay to not be okay \

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 🖤

#FAI #hipimpingement #emotionalhealth #ganglioncysts #wristsurgery #EDS

#ehlersdanlossyndrome #POTS #MCAS #mastcellactivationsyndrome #CCI #craniocervicalinstability#dysautonomia #hashimotos #chronicillness #spoonies #alopecia #alopeciauniversalis #thespooniesisterhood #kidsandchronicillness #chronicillnesswarrior #chronicfatiguesyndrome #CFS #chiarimalformation #butyoudontlooksick #invisibleillness #chronicpainawareness #chronicpain #buildabridge

/ moving forward \

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 🍁
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FAI #hipimpingement #labraltears #askforhelp #emotionalhealth #ganglioncysts

wristsurgery #zebrastrong #EDS

ehlersdanlossyndrome #POTS #MCAS #mastcellactivationsyndrome #craniocervicalinstability #dysautonomia #hashimotos #chronicillness #spoonies #alopecia #thespooniesisterhood #kidsandchronicillness #chronicillnesswarrior #chronicfatiguesyndrome #CFS #chiarimalformation #butyoudontlooksick #invisibleillness #chronicpainawareness #chronicpain

/ post-op \

Surgery went well. Surgeon removed two large cysts with no complications. Numb mostly and loopy from the anesthesia, but overall not feeling terrible at the moment. Just happy to be on the other side of surgery #1 💫

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#ganglioncysts #wristsurgery #zebrastrong #EDS #POTS #MCAS #CCI

#ehlersdanlossyndrome #dysautonomia #mastcellactivationsyndrome #chronicillness #spoonies #thespooniesisterhood #chronicillnesswarrior #chronicfatiguesyndrome #CFS #chiarimalformation #butyoudontlooksick #invisibleillness #chronicpainawareness #chronicpain

/ growth + surgery \

Surgery is tomorrow morning at 6am. I’m feeling simultaneously like a kid on Christmas Eve, while also dreading the pain and recovery process. But I’m happy to be making progress towards getting to the other side of this.

I mentioned this before, but this whole process has brought up so much for me emotionally. I know I don’t hold all the real estate in finding it hard to ask for help. However, this challenge runs far deeper for me than most. I was raised in a culture that fostered pride in independence. If you relied on someone else, your needs probably wouldn’t get met. I also held some pretty toxic friendships that were unstable and manipulative. Being vulnerable and having needs was actually physically and/or emotionally dangerous. In addition, I’m an 8 on the Enneagram. If you don’t know what that is, look into it. It’s an amazing tool that has really helped me not only understand myself, but also those around me. For real though, 8’s would rather get the plague than ask for help.

Asking for help was hard, but what has been surprisingly harder has been receiving the help I asked for! Inviting my friends and community in to this process has really up rooted some deep guttural fears that I didn’t even realize were there. People have showed up for us in amazing and surprising ways. I am beyond grateful. There’s this little voice inside that keeps whispering we don’t deserve this- I don’t deserve this. I’ve been thinking a lot about neuroplasticity and paying attention to those neurons in my brain that have been telling me for so long that people won’t show up.

Y’all have been part of something pretty life changing for me to be quite honest. I’m undoing some really old patterns and letting go of the ego and false self in a pretty substantial way. Words of appreciate don’t do justice the gratitude I have for all of you who have given me the opportunity to unpack these skeletons. Thank you. I’ll let you know how tomorrow goes 🖤

/ how to support us\

Several of you have asked how you can help us during this time. Your support is deeply appreciated. I’ve been trying to figure out what our needs are as my physical abilities are changing. A few needs we currently have are as follows:

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Play dates/Childcare. Especially on weekends or days public schools are closed. Do you have a 6ish year old or a 3ish year old and want to get them together with one of our kids? Do you have some some connection with the girls and want to take them/one out for ice cream or the park? They can be a bit shy so this may not work in all instances but if it’s a good fit it would be a big help. I’ve attached a spreadsheet where those interested can sign up if you want to hang out with one of our kids.

Meals/GrubHub, etc. No dietary restrictions for the rest of the fam. I can’t do gluten/grains, soy, or legumes. My dietary needs/preferences have bounced around a bit over the last year or so. With everything going on I’m trying to be more flexible.

Financial. The combination of medical costs, a few big projects that were urgently needed on the house, and me not working have us pretty strapped for cash. If you would like to support us financially, you can donate at www.PayPal.me/ticebrows.

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It’s almost impossible for me to ask for help for various reasons. I’m looking at this as a point of growth for me. Thanks again for all your love and support ♥️

/ this guy \

The appointment with my surgeon went well. He thinks I have another labral tear and can see some cysts via xrays they took. There was also talk of loose cartilage which would explain the inconsistency of pain from minute to minute. I need to get an MRI and then we’ll move forward from there. Still a waiting game but movement forward. He says we can schedule surgery as soon as he gets images. I can schedule the MRI as soon as I get the auth from my insurance. Everything should be underway in the next two weeks or so. The sooner we get this surgery, the sooner I’m back in the game.

I’m also gonna take a moment and celebrate this guy right here. He has been by my side and an advocate for me every step of the way. He’s been a mirror when I haven’t seen myself clearly. He’s held down the fort with two busy kids running around. He’s pushed himself, compromised, and negotiated in many aspects of his life for me. He’s held me while I cried and made me laugh when I’ve been overwhelmed. He’s an actual gem and I am grateful for him.

#ehlersdanlossyndrome #POTS #MCAS #mastcellactivationsyndrome #CCI #craniocervicalinstability#dysautonomia #hashimotos #chronicillness #spoonies #alopecia #alopeciauniversalis #thespooniesisterhood #kidsandchronicillness #chronicillnesswarrior #chronicfatiguesyndrome #CFS #chiarimalformation #butyoudontlooksick #invisibleillness #chronicpainawareness #chronicpain