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 ✨
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 🖤
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 ♥️
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.
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 💫
I didn’t get the job. I’m disappointed, but I don’t take it personal. I know the person they hired and she’s honestly a better fit for the job. Im sincerely happy for her and I’m trusting the right path for me will come along.
Truthfully though, I’m tired. Navigating life right now is just a little bit overwhelming and physically and emotionally exhausting. Growing up, I was groomed to think acknowledgement of things being hard was a weakness. You shut up, and you power through. Now, creating space for me to acknowledge things are both okay, and not okay, is super important. It’s a balanced and healthy approach to dealing with chronic illness and what that means for me in all areas of my life, not just my career.
In peak moments of exacerbation and anxiety, I find a nap helps hit the reset button for me. It doesn’t solve everything (or anything really). But it takes me out of the “I can’t do this” cycle and allows for me to take a deep breath…
I met with the neurosurgeon today. Lots of thoughts and feelings but I’ll give the highlights.
The good news is, all my internal skull/brain measurements are stable. The MRI shows no instability other than an increased basion dens interval. I do however have C1-C2 instability and C5-C6 instability. My measurements are borderline surgical, but he says with my case, he’s hoping a few months in a cervical collar (as much as I can) will help stabilize the joints and vessels and relieve some symptoms. I currently can’t wear it at work or while driving, so I’ll wear it at home mostly for now.
He also said, given my autoimmune history and other symptoms, he wants me to see an immunologist, a gastroenterologist, and I need to follow up with a proper endocrinologist for my Hashimotos disease.
He was one of the kindest doctors I’ve met. He was thorough, took his time with me, and answered all my questions. He also ran out and got a box of tissues when I unexpectedly started crying (that’s for another post). I’m exhausted, especially at the thought of seeing more doctors. But overall, it’s movement in the right direction.
I finally got my upright MRI. Im happy to be moving forward and also nervous about results. I’ll get the report and have my neurosurgery consultation on Monday. My headaches and pressure have felt more intense these past few weeks. The weather has been crazy too and I feel like that tends to make it worse.
The technician was so nice and works with people who have my conditions all the time. When he asked about symptoms, I was hesitant because there’s so many. Then he just said “Wait, do you have EDS, Chiari, POTS and CCI?” And I could just answer “Yes!” …And I didn’t need to say anything more. I’ll seriously travel anywhere just to feel seen and known through this crazy journey 😌
You know that part in the book “Oh, the places you’ll go!” by Dr. Seuss about The Waiting Room? About the people just waiting…
…Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or the waiting around for a Yes or No
or waiting for their hair to grow.
Everyone is just waiting.
This last few weeks I feel like I’m stuck in that room with those people just… waiting. Insurance denied the upright MRI I need to bring to the neurosurgeon stating it’s “not medically necessary” 🙄 Ironically, it’s literally the imaging I need to determine the course of treatment. It didn’t make sense to see the neurosurgeon without all the imaging I need to move forward, so I cancelled that appointment. Insurance needs to do a peer to peer review with my referring physician to determine the appeal. Unfortunately my doctor was out of town/the office for a week and a half. Now he’s catching up on other patients, and it’s been a nightmare trying to get ahold of anyone there who can relay the message to him so we can move forward. So for now I’m just…. waiting.
In addition, I interviewed for a position at my hospital that would be more administrative. Working at the bedside has been incredibly rewarding, as well as incredibly exhausting. I work on a brain injury unit. The amount of care many of my patients require has done a number on my joints and I come home from work exhausted and in so much pain. This job would be a huge blessing and it’s something I’m passionate about. I won’t find out until the end of August.
Waiting on things beyond my control is not my strong suit. Maybe you can relate? I’m trying to take this as an opportunity to exercise patience and have faith that things are going to work out exactly as they’re meant to 🤞🏻
This is Winnie, one of my daughters. She turned 3 years old today. I have lots of feelings about being a mom with chronic illness. It has been a dichotomous journey between feeling like I’m not enough and giving myself grace. My inner monologue plays both of these parts pretty well- though tends to favor the “Im not enough” camp, even though my brain doesn’t actually believe this to be true. I don’t think I’m alone in this experience.
The truth is, I had dreams of shared experiences together that I just don’t think will ever happen for many reasons. Being outdoors has always been important to me. Riding bikes, hiking, swimming, or having them try things like skiing. Currently though, most of these things are incredibly challenging or impossible. It’s exhausting just to take a trip to the beach, or getting them out to build a snowman. I do the best I can, I just wish I could do more.
The other thing I think about is the genetic component to my diseases. They both exhibit signs of EDS and/or MCAS. Though I’m thankful we are getting answers (knowledge is power after all), the possibility of passing down to them what I have breaks my heart and fills me with guilt. I know I know, obviously I didn’t choose this path for my girls, or myself for that matter. But mom-guilt isn’t always logical.
It’s been important for me to allow myself to feel both the ups and downs of this journey. The thankfulness and grace, as well as the grieving and frustration. It’s a complicated road. A lot of times people try and cheer you up from having more challenging emotions. Sometimes we don’t need someone to make us “feel better”, just be alongside for the journey and let us feel our feelings. I don’t live in the land of feeling like I’m not enough, but I visit there from time to time and I think that’s pretty normal. Then I get back up and remember my kids know that they are loved, that they are seen and known. Those are the things they’re going take with them moving forward. And that is more than enough.