Amens for Amanda

How to show support to someone with a chronic illness 🫱🏼‍🫲🏽⤵️

🩷 Do not minimize how they feel

🩷 Research and learn about their illness

🩷 Offer your help when needed

🩷 Check up on them often

🩷 Always believe them even if you don’t understand

🩷 Be patient with them, always

🩷 Don’t engage in toxic positivity

🩷 Help them remain calm and positive

🩷 Always be willing to listen to them

🩷 Keep a close eye on their well being

🩷 Check in on their mental health

🩷 Remind us of the positives we bring to the friendship/relationship

❤️❤️❤️

This is so true. Especially when you have genetic conditions, rare diseases, chronic pain and/or life altering chronic illnesses - there is (unfortunately) no quick fix or easily solutions with the type of healing that we are doing.

Take things one day at a time.
Don’t give up on yourself.
Try not to compare yourself to others.
Keep fighting! 💪 🩶 😌

To all my chronic pain warriors: I see you, you’re not alone and you’re amazingly badass to get up everyday with this big invisible monkey on your back and still try to conquer the world. 💪🥹
This life is hard enough. Please be kind of yourself!❤️❤️❤️

I wish I had the words to say thankyou for everything my precious Momma has done for me over the last 4-5 years when I became “officially” disabled…. Not to mention the doctors appointments, tests, procedures, cleaning my room and taking care of Gideon 🐶 🐾 when I’m too weak, running a million errands, holding my hand and giving me a hug through all my crying and panic attacks when we get more bad news from my doctors, helping me through every difficult spinal procedure, advocating for me when I’m literally ready to give up, buying me groceries and medications, picking me up from school and work, LITERALLY rescuing and moving me from two states (Michigan and Washington) when I got so so sick and had to leave everything behind to go back home. 🥲

She is such a fighter and an advocate for me has, many, many, many times, been one of the main reasons I have stuck around still.

Here’s to you, mom. I hope that 2023 and beyond bring us BOTH love, joy, less pain, endurable hardships, a closer relationship with God, more stability and concrete answers.

Thank you for being my rock.
I don’t deserve a Mom like you but I sure am glad God put us together. 💞🥹🥹🥹🥹

💞

🧠Mental Health Monday reminder: 🧠

Telling someone to "snap out of it" when they are depressed does not help.

Instead, sit with them in the pain.

Offer to pray with them.

Assist them in connecting with someone to help.

Extend hope.”💛💜

💛💜✨

This happens every so often. The grief is real, and you are allowed to feel it!🩵🩵🩵

A photo representation of “Whose the best boy??” 😂😂😂😂

Also, I can’t say thank you enough to my caregivers. I have been very emotional lately and I hate that all of this extreme pain makes me feel this way, but I’m very thankful for these two for sticking by my side. Love you both. 🩵💕🥹🥹🥹

This is not a big ask. Truly.

Looking to connect beyond this space? Check out Survivor Speak. Linktr.ee/natepost. ❤️

I’m so glad you’re here! 💞✨

Had another checkup this week - Ty mom for taking me and taking care of me, even though sometimes I’m very(!!) overwhelmed and can be crabby. 😅😅😅 Love you 💞💞

🧠 Health Update 🧠Post Injections:

Well, unfortunately this round (my first in the neck) of epidurals\steroids seems to have failed.🥲 💔💔💔

NGL - It did hit me very hard emotionally. Right after the op I felt GREAT and my pain was back at a 5/6, which for me, that’s the lowest mine ever goes. I guess it was just the fluid filling that space in my neck where bone is hitting bone/nerves that it shouldn’t be(?) but that night I got home and next day after, it returned back up to an 8 again with lots of nausea, vomiting and other symptoms and has stayed pretty much up there since.

I cried for three days. And again yesterday I lost it.(sorry mom😭😭😭😭)

I really really wanted this to be my “quick bandaid” option to feeling more sustainably better while we wait on a review of my case from surgical team to figure out the timeline of the next few months regarding my neck and back injuries.

Xoxo
💞💞💞💞💞
- Amanda Faith

💛💛💛

We care for one another in difficult times by offering up acts and words of kindness wherever we can. These kindnesses are then strung together into a chain of hope, resilience, and courage, providing us with the support we need to keep moving forward. You truly never know how much someone might have needed that word, that gesture, that hug, that laugh, that reminder — and how it sustains them in their hardest moments.

Appreciation post: Sending my thanks to these sweet three peeps!!

Aunty Linny, Justin & Theresa Miller Crawford are so good about texting encouragement in the group chat and for checking on me and making sure I’m still alive (lol) when I feel super duper sick and I don’t get out to walk Gideon 🐾 for our longer walks or if they don’t see or hear from me for days then they know somethings up (usually that means my pain is high or my fatigue is really bad and I am having to recover or I’m back on bedrest again🥲😅.)

Also, they got me the sweetest birthday gift - this precious frog planter and other goodies. 🪴 🐸 🥹

Love y’all and thank you for “adopting” me and always looking out!!🤗💜

P.S. if you haven’t checked out their awesome page - Team Justin please do! Justin is an absolute GEM!! 🙌🏻 Theresa is his full time caregiver (Lin helps also) due to the fact he is nonverbal with Autism and rare genetic - neurological 🧠 conditions that results in constant seizures every single day.

Despite all of this though, he has such a sweet smile and personality. He and his family are definitely worth getting to know!😊😊😊

🧠 Spine & Brain health update 🧠

Had a virtual app with Mayo Clinic Neurology. Mom and Gideon are as always, awesome and amazing 🥰 and on standby with me for comfort (and to add things I forget lol my health history is SO MUCH to keep up with).

1. We’re watching my neuro symptoms and they want me back in the office in person at the end of the Summer or early Fall. We will be reevaluating my treatment plan in regards to my leaks and spine complications in conjunction with my awesome doctors here in GA.

2.Still fighting Insurnace to cover Reyvow. Ugh.

3. Ive failed (meaning it didn’t work with my body and I didn’t have the amount of relief needed) every other migraine drug out there (so far, who knows, maybe sowmthing new will come to market soon? lol) so this is the next probable step before they consider things like infusions and hospitalizations to try to treat.

I have asked before but I wanted to ask specifically for prayers again please that it will be covered. We’ve been going back and forth for months (I think over a year now or close to it?) with this one 😅 and I’m over it. Staying positive but don’t have the energy for them to gkeepngiving us the run around.

My doctor is having to file special paperwork 📝 again to try to get them to pay for it.

I have THREE insurances so you would hope to goodness that something would pick it up but with all of these specialized medications that’s not always the case.

Ty, love and hugs 💕
-Amanda Faith