/ 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

I was going to wait to update until after my appointment with my surgeon on Wednesday. But things have been deteriorating rapidly, so I figured I would just update now.

It’s been getting increasingly more difficult to walk. I have incredible pain in my left hip from the impingement, so I have been putting more weight on my right hip. However, my right hip has never been quite as strong or the same since the impingement & surgery I had on it four years ago. I can feel my right hip clicking now and becoming more unstable. I also noted my left knee feeling unstable. It feels like it’s dislocating. I put my hand over my kneecap and bent my knee and when I went to straighten it out I could feel my kneecap crack and pop back into place. Gross I know.

In addition, I still haven’t gotten the surgery I need for my wrist. I’m borrowing a pair of crutches from a friend which has helped with the hips mildly, but now I’m putting all this weight on my wrist that has cysts in it. It hurts. I have a high pain tolerance due to being in some amount of pain literally all the time. This last week though has been excruciating. It feels as though my whole body is going to fall into pieces any minute. I know that sounds dramatic, but it’s legitimately how I feel.

This is all taking a toll on me emotionally today. I have Ehlers-Danlos Syndrome. Connective tissue disorders are unpredictable. In two weeks time I went from working full-time to barely being able to get out of bed. I’m frustrated. I’m scared about my future. I’m exhausted.

Something I’m grateful for is the amount of support those around me have showed. I’ve had friends help with childcare (especially on weekends- I’ll be putting something up about that soon), deliver groceries, and bring us meals. Thank you to those who have reached out ♥️ It’s incredibly hard for me to ask for help. I feel embarrassed, vulnerable, and that I am a burden. There’s still a lot of emotional growing up and nurturing I need to do as my physical needs change. I have a feeling I’ll be unpacking some of that in this upcoming season of need.

This picture is unrelated, I just thought I looked happy and pretty ✨

/ some answers \

Anona’s doctor appointment went well. Her neurological exam was perfect. The doctor said he thinks she’s getting atypical migraines. We kind of need her to have more of these headaches for us to be able to get a better assessment. So for now we are starting a headache diary and we will continue to monitor.

He also said based on a physical exam he thinks she likely has EDS and is glad she is set to see a geneticist in November. He also wants her to be evaluated for ADHD (neither of these things are surprising to us).

At this point honestly, I’m just grateful he does not think it’s anything more concerning. Of course I don’t want my kid to have migraines. But honestly migraines, EDS, and ADHD feel like things that are manageable. Something like a brain tumor on the other hand would put me over the edge. I work on a brain injury unit. I see the worst case scenario all the time. People who were seemingly fine, had a bad headache one day, went to get checked out, only to find out they have glioblastoma. It’s hard not to go to the worst case scenario sometimes.

So for now, though it means more doctors appointments, I’m grateful. I’m also grateful whenever physicians know anything about EDS. We still don’t know what we don’t know regarding Anona’s health (and mine). So any movement towards getting more information and answers for Anona has me thankful.

Thanks to all those asking about her. It means so much to me to know how deeply she is cared for 🖤

#ehlersdanlossyndrome #EDS #zebrastrong #POTS #MCAS #mastcellactivationsyndrome #dysautonomia #chronicillness #spoonies #alopecia #alopeciauniversalis #thespooniesisterhood #kidsandchronicillness #chiarimalformation #butyoudontlooksick #invisibleillness #chronicpainawareness #chronicpain #migraines #ADHD

/ miss hips \

Over the past year or two I’ve been struggling, but pushing myself because the bills aren’t going to pay themselves (and I love my job). My body put an end to that (at least temporarily) this week.

Anona, my 6 year old, has been getting headaches this month. Headaches so bad they make her scream and vomit. Followed by her completely passing out. We took her to her pediatrician Tuesday to get her checked out. They said we need to follow up with neurology at CHOP, and we have an appointment next Tuesday.

As we were leaving her pediatrician, my left hip started to hurt…. bad. It’s a specific kind of pain I know too well as it is something I went through with my right hip four years ago. I have hip dysphasia (thanks EDS) and had a Femoral Acetabular Impingement, torn cartilage/labral tears, and cysts. The exact word they used to describe my cartilage damage was “macerated” 🤢 I needed a surgery called a Femoral Acetabular Osteoplasty. When they looked at my scans four years ago, they said my left hip had the same thing and it was only a matter of time before it “went”. They actually said what I need is a hip replacement but I’m way too young for one. So the osteoplasty is a form of joint preservation, basically to buy me time until I’m a more appropriate age for a hip replacement. By the end of this past Tuesday, I couldn’t walk.

This hip stuff is finicky as it ranges from day to day. For example, with ample rest I might be able to be functional the following day with mild to moderate hip pain. But if I push it even a little, then by the end of the day the pain is so severe I can’t bear weight on it. I’m a bedside nurse. The two aren’t compatible.

So, on top of kids, leaking roofs, chimney repairs, electrical problems, and going to my own doctor appointments, I’m facing a decent amount of time I won’t be able to work (or walk). What I need is like 4 months where I can get my hip surgery and the wrist surgery that I need, put Humpty Dumpty back together again, and then hopefully get back to work. I’m not sure how we’ll manage that time off financially, but we’ll figure it out.

Thanks to those who have shown up for me in this time. It’s deeply appreciated ♥️