/ 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 🍁
.
.
.

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 💫

.

#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:

——————-

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.

———————

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 ♥️

/ mental health \

The picture above is me resting a little extra this morning. In the past I would have held judgment for myself- calling myself lazy. I now know my worth is not based on productivity, and that there is fruit in taking time for myself.

Let’s talk about therapy. Not the physical kind. The talking kind. The emotional kind. Seeing a counselor, therapist, psychologist, or psychiatrist often comes with a stigma attached to it. We grow up in a society that believes if you need to “pay someone to listen to you talk about your feelings” that there clearly must be something wrong with you. Even that phrase, “something wrong with you” implies how we qualify emotions- how we label some emotions and the people who experience them as “good” and as “bad”.

I’ve been unpacking a lot of things with my therapist for about ten years now. Patterns of thinking that are unhealthy, trauma, old coping mechanisms that do more harm than good; the brain is smart and sneaky in the ways it helps us survive. However, if you can get out of the trenches, it’s important to achieve self-awareness. To figure out how to tell our brains when we are safe, and it’s time to not just survive, but to thrive.

Becoming emotionally and mentally healthy can be challenging. It becomes much more complicated when you add chronic illness to it. When I first started therapy, I would literally take the rest of the day off to recover physically from where I went emotionally. It was hard and scary and exhausting. And yet so incredibly invaluable. I understand my relationship with myself and those around me so much better. My relationships are authentic, with depth and trust. Despite a failing body, my emotional quality of life is the healthiest and most fruitful it’s ever been.

Knowing myself has been a significant tool in my emotional tool box when dealing with doctors and various kinds of boundaries. Physical and emotional medical trauma is real- and it never gets talked about. There are lots of things I can’t change about my body/physical health. But I give myself the gift of emotional health whenever possible, allowing myself to hold both the darkness and the light- and everything in between. Without judgment and with grace.

/ first grade \

First day of first grade.

My oldest daughter, Anona. She is funny, sensitive, creative, friendly, and imaginative. She is easily frustrated, but also easily encouraged. Her hobbies include drawing, karate, swimming, and hiking with her mama. Today she started first grade. She approached this year with far more confidence than last year. I am proud of who she is ♥️

Lately, Anona has been complaining of her ankles rolling. She complains of occasional joint pain. She is super hyper mobile, is 9/9 on the Beighton Scale (I know kids tend to be more flexible, but she is far beyond her peers), and has had other symptoms/traits that are highly suspicious for EDS. We haven’t gotten her diagnosed yet. I’m not in any particular rush to- but I am nervous to see more symptoms unravel.

She’s my kid. I want to protect her. I don’t want to see her in pain. It breaks my heart to think she might have to go through some version of what I’m going through. We are just going to have to wait and see what happens.

For now, I’m gonna just let her be a kid enjoying her first day of first grade 💫

.

.

.

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