I’m getting out of the habit of [over] apologizing for things I don’t need to. So instead of saying something like, “Sorry it’s taken a while… ” I’m going to say “Hey, thanks for your patience in getting this update posted”. It makes me more mindful of when a true apology is needed and encourages sincerity and authenticity from my end. But that is not what this post is about.
Winnie has still been puking with headaches. After a GI work up with endoscopy, genetics, and a Neuro work up & brain MRI, the good news is, there is nothing serious that we found! They diagnosed her with Cyclic Vomiting Syndrome which basically means they don’t know why it’s happening, but it’s not a brain tumor, celiacs, allergies, gastroenterological anatomical deformity, etc. We’re hoping she outgrows it.
As for me, I’ve been chugging along. I’ve been having an increase in Chiari symptoms the last few months. Increased head pain and pressure and radiating pain down my neck. Lots of vertigo and nausea. My dysautonomia has been more unstable. I need another upright MRI, but my new insurance company is terrible and it’s taking forever to get it approved. We are making progress though so I’m hopeful.
The bad news? I have another labral tear. My right hip this time. Last surgery on that one was 2015. When I had my consult with my new hip surgeon in May it was just to get established. He was hoping that I had enough scar tissue to prevent another tear and that my next issue would be eventual arthritis years from now that would lead to a hip replacement. I told him a few times that when my hips “go out” it is completely spontaneous and that I felt like I was going to get another tear sooner than later. He said “That would be unlikely.” Four weeks later it tore again 🙃
I have a follow up with him 8/5. In our initial consultation he did say I am beyond any more preservation and regardless, the next time I have an issue we will need to do a replacement. So I’m anticipating that will be the next step, but I will know for sure after my appointment with him. My spirits are mostly good despite the pain. Hope yours are too ✨
Pictured: Some of the many doctors appointments Winnie and I have gone to together over the last 6 months.
That’s what this is right here. It’s been a crazy few months (hence the radio silence). We moved back to upstate NY for several reasons, and I’ve been anxious about what new doctors I’d meet and what kind of support I might find. I just left my new PCP after she took two hours talking with me and going over my entire medical history. She was supportive, knowledgeable, affirming, and compassionate! She knows a ton about EDS and has so many recommendations for my other specialists, both for myself and the girls! Including a new geneticist 😍
My old PCP was very supportive, but didn’t have a lot of new ideas of where to look when things kept going wrong. I felt like I had to bring all the research to the table. All the specialists I saw were all over the place, both in their practice approach and geographically. This doctor is super smart, but not egotistical, and I feel I’m going receive much more continuity of care. I’m just so overwhelmed with gratitude just thinking of having better medical support right here in my own town.
With the heaviness around me, it seems silly to be excited about something superficial. We are in the middle of a #pandemic with a society about to reopen. I’m still deep in the throes of grief for my dad. We are baring witness to police brutality, murders, and racism. I am enraged and my heart breaks for the injustice to these victims and their families. I’m trying to be the best homeschool teacher, RN, parent, wife, friend, daughter, and sister, while feeling incredibly beaten down by this life. BUT, my sister n law got me these amazing magnetic eyelashes by @Toribelle and, I gotta say, it’s nice to have a little morale booster amongst the chaos 👩🏻🦲💃🏼
I have lots of thoughts being an RN with chronic illnesses and a compromised immune system during this time. But that’s for another post when I have more time and energy. Today, just remember, cliche it may be, we are all just taking this one day at a time. If today finds you sad, that’s okay. If today finds you anxious, also okay. Ten bucks says if you reach out to someone, they’re likely feeling something similar. Deep breaths. Here we go. We got this ♥️
For whoever needs to hear this right now:: your pain, suffering, fear, disappointment, and anxiety is just as valid as anyone else’s. This pandemic has us all struggling in different ways. I’ve had multiple people in the past week tell me about some way that they are suffering, and then promptly discount their own suffering by comparing themselves to other people stating other people have it worse. If there’s one thing I’ve learned from chronic illness, it is that you can hold both gratitude and grief at the same time. You don’t have to choose between the two. Hold them both. There is room for it all. We are more in touch now with the human experience than we’ve ever been. We are humbled by our fragility and encouraged by our perseverance. We don’t have to choose one specific feeling. They are all valid.
Updates! There’s so much. I just got back from visiting my family. It’s been heavy since my dad passed. There’s a lot of logistics we are still figuring out, and the nature of the current COVID situation isn’t helpful. I love my family dearly ♥️
I’m an RN, so I’m still going to work. As someone who has a compromised immune system, this comes with a lot of concerns. I’m working to join a COVID-19 screening task force that basically acts as a remote triage nurse screening patients before they come in for outpatient appointments. This would be easier on my body and would create less exposure to potential COVID patients by getting me out of the hospital for a bit. We will see how that turns out.
Anona has been having migraines with vomiting again. And her newest complaint has been seeing flashes of light. Given the COVID crisis, all of her upcoming appointments/screenings have been cancelled until further notice. It’s hard not to worry and I feel a little stuck. Also, Winnie has started losing her right eyebrow. Given my history of alopecia and endocrine issues, it could be either. That brings up a whole other onslaught of feelings and thoughts.
My online classes/homework are business as usual so it’s gonna be tricky balancing that with both girls home all the time and limited places to go. I might write my professors an email as I can’t be the only one experiencing the hardships of parenting quarantined kids and needing to complete homework.
Trying to hold gratitude with my grief. There is still so much I am grateful for. My heart just feels a bit weary. Remembering to breathe. Been having “Candle Song” by @EarthPracticeMusic (go listen to them you will feel better) running on loop in my head. “Even though there’s darkness around the candle, focus on the flame 🔥 You get to choose what you pay attention to.”
:::Paying attention to sunshine. Warm fresh air. Deep belly breaths. Food and water. Slowing down:::
I’ve had a lot of people asking me how it’s been going back to work.
In short, it’s been awesome and challenging at the same time for a few reasons. My body is still recovering from surgery. It’s healing much slower than it did when I had the same surgery on my right hip in 2015. 13 hour shifts leave me in a good deal of pain (on top of already having chronic pain) by the end of the day/next morning. I know this pace isn’t sustainable for my body forever.
But, for my spirit? Holy crap it is SO GOOD to be back! I legitimately love my job. The days leave me tired by content.
I think the hardest part right now is that I started online classes last month too. I’m getting my School Nurse Certification to eventually slide over into a more sustainable nursing position. Between working full time, school/homework, parenting two kids, and chronic illness/doctors appointments, I have very little time & energy for anything else. But it’s all an investment for things to be a little simpler in the near future 🤞🏻
SO, all that to say, life is good, hard, full, challenging, and rewarding all at the same time. I’m sure many of you can relate 🤍
That’s how long it’s been since I worked my last shift. Until today! First day back at work since all this stuff went down. My colleagues and friends at work are so supportive and the transition back couldn’t have been smoother. It feels good to be the nurse again, not the patient. This season has taught me a lot about receiving help from others. However, I’m soaking up the opportunity to care for others again while I can 🤍…
🙌🏻 More good news 🙌🏻 • My gastroenterologist just wrote saying all the biopsies were benign. No signs of cancer! No Barretts Esophagus (phew!) just a ton of chronic inflammation. The polyps were benign hyperplastic polyps. All my blood work came back normal too. So he wants to go over all my medications, prescription and OTC to see if they could be contributing to some of this. But as it stands, all of these things can be addressed/potentially fixed! • Shouting good news from the rooftops if I get some. Thanks for all your prayers, good words, and support. Hoping you got some good news today too ✨ . . .