My Story (The Real Thing)

Hey guys, welcome to my blog. If you are reading this, i’m so happy you are here!

Please reach out to me so we can connect. The more friends (of all ages!) in the wellness space the better. I’ve found that the best remedy for my soul is knowing i’m not alone in this whole Life After Diagnosis journey:).

Quick disclaimer - just so you know, I am not an expert or a medical doctor (and my grammar is terrible) so please don’t take any advice I provide as anything other than friendly guidance from my own journey. I won’t write about anything that I haven’t personally experienced and this is an open forum where I hope to learn and grow along the way. As I mentioned in the My Story page, I decided I don’t want to wait until I have it all figured out to share my story, so this is my attempt at opening myself up to more connections because I know i’m not the only one struggling through life after a complicated diagnosis (or any diagnosis at all)! I will warn you its a vulnerable thing to write about so please have grace on me. I’m just a girl hoping this reaches someone who needs to hear they aren’t alone, and if nothing else, attempting to make sense of this crazy story for myself.

So, i’ll start from the beginning. Here we go…

In 2023, at the age of 25, I got sick, really sick. I thought it was a normal virus but it lasted 4 weeks and I started having really strange and alarming symptoms that didn’t seem to tie together at all (i’ll spare you the gross details). After many false diagnoses, my cousin (one of my heroes) suggested I get blood work with inflammatory markers. Turns out, I was highly inflamed (among other things) and I was urgently sent to the hospital. I am so blessed that my diagnosis with Vasculitis GPA, ANCA positive, was found within 2 months of initial symptoms. I know for many getting diagnosed with an autoimmune disease can take months if not years and I have so much compassion.

On February 8th, after a conclusive kidney biopsy, my life turned upside down. I went from a healthy, ‘normal‘ 25 year old, living in San Francisco with my dream job at Apple, to someone with the label “rare autoimmune disease.” I started hearing the words “we aren’t sure what to do with your case” “there is no precedent for this in someone your age” “you are a unique case” “we have to do more research” “we aren’t sure this treatment will work” “its like a lightning strike, we cant tell how you got this” “you may be on dialysis the rest of your life” “you may need a kidney transplant” “we cant guarantee anything.”

Needless to say, I was terrified. Like I said before, I know what it’s like to wake up (if you sleep at all) in a hospital room, fighting for your life, just hoping and praying for a miracle. Now, I wasn’t sure I would write this part because i’m pretty sure no one likes to admit they went completely crazy, but its part of my story. Not only did I have Vasculitis GPA and failing kidneys, I also had a near deathly reaction to high dose steroids (twice now) which caused me to enter into a state of psychosis for over 3 months. My mom and my aunt (angels, heroes, you name it) stayed with me so i was never alone. I feel so blessed with the family and support system I have and it breaks my heart that not everyone has that. I believe with my whole heart that everyone deserves that kind of love and care and true wholistic, healing healthcare should be accessible to all of us.

Back to the story, I finally left the hospital after 39 days completely sleep deprived and literally crazy with 2 surgeries and a whole lot of trauma to go with it. The picture you see in the header was the view from my hospital room for these 39 days (at least the view was nice!). I’ve been on short term disability twice now, not working for about 6 months in 1.5 years and staying at home in FL with my loving family (trust me you’ll learn all about them, my heroes). Thankfully Apple and my work community has been so supportive and amazing during this whole journey.

I’ve been on crazy medications, experienced every possible emotion, thought and soul wrenching realization over the past 1.5 years. I don’t know why these things happen, but for me personally I believe God works all things to good for those who love and trust him. The only thing keeping me sane in all of this is knowing that I am loved, cared for, and not alone. I get the opportunity to find the lightning bugs, like extended time with friends and family, in this darkness.

I feel inspired to write my story not because its not terrifying, embarrassing and utterly vulnerable but because i’ve connected with countless people over the past 1.5 years who have also experienced heartbreaking diagnoses that have completely changed their lives and they gave me hope.

The Vasculitis Foundation, has been so supportive in helping me feel like there are other people like me out there. I hope this blog reaches more people who feel like me. I’ve learned, sometimes through blind faith and trust, that there is hope for a better future and i’m not stuck with my diagnosis for the rest of my God-willing long life. My doctor’s (especially my dearest friend and mentor, you’ll hear more later), were amazing during my journey in the hospital. I felt supported and cared for to the best of a medical doctor’s ability and even more with my dear friend, but i know not everyone has that luxury.

I discovered through my journey that there is a gap in patient care after diagnosis when we leave the hospital forever changed and I hope to spend my free time helping people know they are not alone and someone out there can relate. I don’t have the answers but i plan to spend the next few blog posts (I promise not so depressing) sharing the tips, tricks and lightning bugs that my heroes taught me after the hospital with the hopes that it helps just a little bit.

We will explore things like exercise, foods, clean living strategies, animal therapy, ocean therapy, music therapy, gardening etc and I will share the many resources shared with me that honestly saved my life. Here’s to cheering each other on and praying that you feel inspired and full of hope! You are more than capable and you are not alone. Thanks for joining my journey with me :).

Xoxo,

Hannah Rebekah

There is Hope, Always

LAD:)