/ 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

/ naps \

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…

and put one foot in front of the other.

.

.

.

#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

/cervical instability\

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.

Also, fun fact, I have no gag reflex 🥳

.

.

.

#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

/ Feeling Seen \

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 😌

.

.

.

#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

/ waiting… \

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 🤞🏻

.

.

.

#ehlersdanlossyndrome #EDS #zebrastrong #POTS #MCAS #mastcellactivationsyndrome #craniocervicalinstability #CCI #dysautonomia #hashimotos #chronicillness #spoonies #alopecia #alopeciauniversalis #kidsandchronicillness #chronicfatiguesyndrome #CSF #ME #butyoudontlooksick #invisibleillness

/ kids + chronic illness \

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.

.

.

.

#ehlersdanlossyndrome #EDS #zebrastrong #POTS #MCAS #mastcellactivationsyndrome #craniocervicalinstability #CCI #dysautonomia #hashimotos #chronicillness #spoonies #alopecia #alopeciauniversalis #kidsandchronicillness #chronicfatiguesyndrome #CSF #ME #butyoudontlooksick #invisibleillness

/ surgery \

It’s often an inevitable part of EDS unfortunately. We are instructed to try physical therapy first, maybe steroid injections- less invasive measures if possible. When all else fails, we often need surgery.

My left wrist has been bothering me for quite some time. On and off for years, but more specifically and consistently since October of last year. I had a very minor fall last autumn, but it doesn’t take much when your joints are loosy goosy. I developed two cysts that are deep and pressing on a very painful nerve. In addition I have swelling in the surrounding tendons and the combination leaves me unable to bear any weight on that wrist.

I tried PT and steroids, but neither of those would remove the actual problem. One orthopedic surgeon recommended a splint and more PT (too conservative at this point). A second recommended she do a full wrist arthroscopy and explore the surrounding tissue to see what’s wrong (a bit too invasive and unnecessary). A third recommended he excise the cysts and send them off for biopsy (they’re technically tumors and although malignancy is doubtful, it’s important to rule it out) and see if their removal relieves the pressure and crowding of those nerves (juuuust right).

I haven’t set a date yet. I have to see when it makes sense regarding my work and kids schedule. Probably in about six weeks or so.

I’ve only had two prior surgeries to this one. I’m thankful this procedure is nothing more pressing at the moment. I’m also thankful for second (and third!) opinions! The second surgeon was really pushy, and super impersonal. I felt like I had to do what she wanted, but it felt so wrong in my gut.

Surgery is deeply personal. Someone is literally inside your body. Having that person be qualified to be present and skilled both clinically and emotionally is priceless.

.

.

.

#ehlersdanlossyndrome #EDS #zebrastrong #POTS #MCAS #mastcellactivationsyndrome #craniocervicalinstability #CCI #dysautonomia #hashimotos #chronicillness #spoonies #alopecia #alopeciauniversalis #surgery #chronicfatiguesyndrome #CSF #ME #butyoudontlooksick #invisibleillness

/ dog days of summer \

Every spring I tend to get anxious as the impending and inevitable heat of summer approaches. Heat intolerance is alive and well in this body of mine. It is a symptom of POTS that has been getting worse with time. For me, the heat triggers tachycardia, pain and tingling in my arms and legs, lightheadedness, headaches, and just an overall feeling of yuck. I used to feel like I had to tough it out. Now, I unapologetically hop from one air conditioned environment to another, waiting out the dog days of summer until that sweet crisp autumn air greets me. Who’s with me?

.

.

.

#ehlersdanlossyndrome #EDS #zebrastrong #POTS #MCAS #mastcellactivationsyndrome #craniocervicalinstability #CCI #dysautonomia #hashimotos #chronicillness #spoonies #alopecia #alopeciauniversalis #chronicfatiguesyndrome #CSF #ME #butyoudontlooksick #invisibleillness

/ what is POTS? \

POTS stands for Postural Orthostatic Tachycardia Syndrome. It’s a condition that affects blood flow/circulation upon standing. Orthostatic means relating to an upright posture. Tachycardia means rapid heart rate (generally greater than 100). Symptoms and severity can range from person to person and can include lightheadedness, rapid heart rate, and fainting (syncope). I know some who are or have been bed bound due to this condition. I know some who are barely symptomatic. I am symptomatic. My heart rate fluctuates from 50bpm sleeping, up to 180s at times just walking around (not exerting myself).

.

.

.

I was diagnosed with POTS after an active stand test (heart rate and blood pressure are monitored from lying down, standing, standing for 2, 5, and 10 minutes), in addition to a tilt table test, and something called an Autonomic Breathing test. I have a more rare form a POTS called Hyperadrenergic POTS. (Upon finding this out I laughingly said to the doctor “You mean my body can’t even do POTS right 😂?) This form of POTS involves the sympathetic nervous system. Basically, simply standing up puts me in “fight or flight” mode. My heart rate increases, but instead of my blood pressure dropping (as it does in more traditional POTS patients), it actually increases until it can stabilize itself. I’ll get dizzy, often shaky, and clammy.

.

.

.

Another symptom I get is blood pooling. Basically my veins are not pushing the blood back to my heart the way they should. After many detailed tests, my doctors found I lose almost 50% of my blood volume in my heart just by standing up, a number they both kept saying was “very significant”. My feet and hands turn purple and mottled, and my veins swell up. At work I use knee high compression socks, but in the summer those are difficult to maintain. They started me on a medication that can be used to regulate heart rate and increase venous return. However it was making me even more dizzy than I already am, nauseas, gave me slurred speech, and caused terrible feet and abdominal muscle cramps/spasms. I stopped taking it and will see what our other options are at my next follow up.

.

.

.

The other thing the doctor mentioned is that sometimes some of these symptoms can be caused by or exacerbated by craniocervical instability. So until we get that assessed further (happening soon!) treatment is on hold. For now, I’ll keep up with my water intake, my salt intake, and let the old Fitbit keep me tuned in to how I’m doing.

.

.

.

Below, first picture, you see a few periods where it really spikes up. At these points I just stood up and was walking slowly.

Below that, second picture, you see a comparison of my heart rate verses my husbands on a typical day. His is the top, mine is the bottom. The yellow indicates your heart is going too fast.

.

.

.

#ehlersdanlossyndrome #EDS #zebrastrong #POTS #MCAS #mastcellactivationsyndrome #craniocervicalinstability #CCI #dysautonomia #hashimotos #chronicillness #spoonies #alopecia #boundaries #alopeciauniversalis #chronicfatiguesyndrome #CSF #ME #butyoudontlooksick #invisibleillness