It might be a minute until I publish again because I’m about to have neurosurgery.
And I wanted to catch you up, but also, I have some things to say…
If you’re just here for the catch up, read “the quick and dirty” section, but if you want to Get. Into. It. All., stick with me through “the long version.”
The Quick & Dirty (TLDR)
I am about to have neurosurgery to remove a large tumor compressing my spinal cord, which has been causing me intense pain and other concerning symptoms.
I have a significant history of blood clots causing a lot of risk and taking as many precautions as I can.
Needless to say, this is very scary and my recovery will be a minimum of three months.
The Long Version
If you want to dig deeper into what I am going through and why I feel compelled to share a lot of my health story with you, keep reading.
But, grab a snack and a drink first, because I am rarely concise. Lol.
And there are many reasons I want to share, including a book I’ve been working on, but the biggest reason is that there is a very real and significant story to be told.
One that goes beyond my personal journey. One that includes many voices.
But, I’ll get to that.
Why Share My Story
First, it’s cathartic. It’s feels freeing to share the hardest stuff.
For example, I shared this post about my mental health journey back in 2021.
View this post on Instagram
For me, sharing was not only about helping others, but it was also about being open about who I am and my struggles. To my surprise, I received an overwhelming amount of positive feedback. People felt seen and heard. And I felt seen and heard.
There was a celebration of sharing in the comments and my DMs.
In fact, the more that I shared on Instagram, the more people shared with me.
Discrimination in Medicine
I shared a bit more of my story last year, when I was blown off by the ER and sent home with a diagnosis of “anxiety.”
And later, I shared my horrific experience getting surgical consultations for my spinal tumor.
View this post on Instagram
Over the years, as I have shared the weight discrimination, bias, and downright abuse that I have endured dealing with the U.S. healthcare system and the field of medicine, something significant happened…
Many of you. MANY, too many, sent me DMs of your stories of discrimination, bias, and abuse suffered at the hands of the very people meant to help you, or at the bare minimum, meant to “do no harm.”
My Mission
So, when I am on the other side of this thing, it will be my mission to tell my story and your stories. OUR STORIES.
Because no one deserves to be treated with anything less that respect, dignity, and the most basic of human decency, especially in a field meant to help.
And to be clear, this is not about merely having one’s feelings hurt. No, this is about systemic mistreatment that results in very real health disparities, permanent preventable damage, and premature preventable deaths.
I will share sources when I have more time, but these are very real measurable health outcomes studied and published in peer-reviewed journal articles.
So this is a very big deal and a fight worth fighting. And I think my voice has a place in the conversation, which at this time, quite frankly, is limited to small advocate circles and researchers.
I used to conduct clinical research for a living and I have a decent grasp of public health and psychology research. And damn if I don’t love pointing out the bias in things!
So I believe my education, experience, passion, and platform can all be used to address this issue- once I’ve recovered.
In the meantime, for some resources, check out Health at Every Size (HAES), HAES directory of healthcare providers, Christy Harrison, and Ragen Chastain.
More of My Story
Now back to what I’m currently facing… In case you’re new here or you missed my 2017 post about my first pulmonary embolism, you may want to start there.
As I mentioned in my “My Favorites: Chronic Pain & Illness Edition” post, I have a lot of health problems… that have lead to more problems, that have led to treatments, that have lead to more problems, and so on.
Between the ages of 25 – 45, I’ve had four “episodes” of blood clots. I have hemorrhaged, had life-threatening anemia requiring blood transfusions, surgeries, and about 50+ days in a hospital bed, cumulatively. It’s a lot.
And now…
I have a large intradural extramedullary spinal tumor that compressing my spinal cord. A fancy way to say that I have a tumor inside my spinal canal, actually it’s taking up the entire canal. And this mass is inside the sheath that houses my spinal cord but not actually inside my spinal cord, that is one small positive thing I can say. It would be worse. And trust, it can always be worse.
The tumor is causing significant pain, leg weakness, numbness, and intermittent struggles with bladder control. Fortunately, it’s unlikely to be cancer. But, needless to say, it needs to come out ASAP. The longer it stays, the more likely my symptoms will become permanent.
And as if having someone saw through your bone to then cut open your dura (which will be happening to me tomorrow) and then cut out a tumor isn’t scary enough, I also should mention that my significant history of blood clots, severely complicates things.
Blood Clots & Neurosurgery
Surgery of any type is always riskier for me because one cannot take anticoagulants (blood thinners) during surgery. And surgery in and of itself increases the risk of blood clots.
But, turns out spinal/neurosurgery is actually even riskier because the risk of bleeding into the spine, which can cause permanent paralysis. So, two things will be different when it comes to me having neurosurgery.
First, the time off of anticoagulants is much longer. My last surgery only required me to be completely off of anticoagulants for approximately 24 hours. Not that long, but terrifying none the less. Remind me to tell you about my panic in the middle of the night when my blood was far too “thick” and I was out of a short-acting anticoagulant. I sincerely thought I might be dead by the time my friend returned from the 24-hour pharmacy. My point is, shit can get real, real quick.
But, for this spinal tumor neurosurgery, I have to be off of all anticoagulants for a full week before and two weeks following. So, a total of three weeks without anticoagulants. As I have mentioned, the last time I was off of blood thinners for this long was 2007 and the result was a pulmonary embolism and 14-day hospital stay. I’ll have to tell you that story too. Like I said, there will be a book.
So, needless to say, this is incredibly dangerous. Straight up, it’s deadly. And unfortunately the only precaution that can lessen my risk, is an Inferior Vena Cava (IVC) Filter.
Fun with Filters
An Inferior Vena Cava (IVC) Filter looks like a miniature umbrella without fabric turned upside down. Essentially this metal “skeleton” of an umbrella is meant to catch clots as they travel from the legs, preventing them from traveling to the lungs.
Why do I say “unfortunately?”
Because I had an IVC filter placed back in 2007. It was recalled by the FDA. Turns out that not only did my filter not do it’s job (prevent pulmonary embolism), but it was killing and maiming people. A lot of people.
One thing I highly discourage if you’re ever faced with a medication or medical device that has been recalled is going to the FDA website and reading about the cases that led to it’s recall.
Yeah, I did that. I read about the many people whose filters broke and set shards of metal throughout their bodies leading to paralysis, lung collapse, open heart surgery, and sudden death.
It Was Like a Bomb
So, I had this bomb inside me waiting to “go off” and do God knows what at any moment. And I couldn’t get anyone to take it out because if you leave an IVC filter in for more than 6 months, it is not recommended to try to remove it. Only, no one had ever told me that part!
Mine had been in my body for nearly 15 years!
So when I had a CT scan to look at it, turns out it was tilted, broken, had perforated my vein with two metal struts, one pushing against my aorta, and was ensnared with scar tissue.
Thankfully, in 2021, I found an interventional radiologist willing to cut it out. It was such an “event” that despite being a world-renowned hospital, they had to borrow “lasers” from another department to safely do so. That was also quite a harrowing story I need to tell. Talk about PTSD! And sadly, two metal pieces of that filter had to be left inside my body. Here’s to hoping they don’t migrate!
A Temporary Measure
So, needless to say, when I heard my best course of action in preparation for neurosurgery was to get another IVC filter, my heart sank. And my anxiety spiked. Not again! I swore never again!
And yet here we are. As I type this, my subclavian vein has a bandage over it from the newly placed filter. Sigh.
But, I will promptly have this bad boy removed because I am not playing chicken with another implanted medical device. I have up to a year to have it safely removed.
Up-to-Date
I actually have a lot more color to add to this. Crazy stories, some colorful and fun, others terrifying. But, preparing for surgery is a lot. Like a full-time job, on top of my full-time job!
But, I wanted to get something out to help everyone understand all that I am going through right now.
So, if you’re patient with me, I’ll be back soon to tell you more about this journey and some of the aforementioned tales. I’m telling you, they’re good!
In the meantime, if you are just dying to read more of my personal stories, check out this post and that post if you haven’t already.
And lastly, I will be giving the majority of my updates in my Instagram Stories and some in my Instagram posts. So, please follow me there if you don’t already.
Thanks for reading and I love you all!
Thanks for sharing. Please take care of yourself during this healing period. I look forward to your return however and whenever you are ready. You have given us so many years of fashion tips rest and recoup. Wishing you safe healing and well wishes.
Dearest Alexa,
I am so very sorry to hear about all you have been through.
You are a young woman who has had to deal with so much.
Continue writing and sharing… it’s important!
You are a strong and courageous
Young woman.
I will be thinking of yoi..
Sincerely,
Gigi
I’m crying!! All of this is unbelievable. You are so strong and brave. Sending my love and care, always. Can’t wait to see what you will do with this and what a voice you will be!!!
I’m thinking of you today and hoping the best for you 💕
Praying for you Alexa. I too was born under an unlucky star health wise. Seven years after breast cancer in 2015, with 42 rounds of radiation for barely stage 1 tumor, I was diagnosed with 3 rare diseases-an acoustic neuroma, essential Thrombocytosis which progressed to myelofibrosis which is believed is a mutation from the radiation! I often think what my parents were doing when I was conceived?! Must have been some food crap as my 4 siblings are fine (thank God)! One day and some times one minute or one second at a time. It’s scary. You will get through this. We are all praying you do!
I meant good crap. Lol
Hi Alexa-
You have been through so much! In your willingness to share and be vulnerable, you are connecting with and helping others who can relate, understand; making everyone feel less alone. I want to send all the prayers and well wishes that your surgery and recovery go smoothly. You got this! You are strong and courageous and I am rooting for you!! Looking forward to hearing updates and your reading your new book!
I am so sorry you are going through all this Alexa! I hope you are somewhat comforted by the fact that you are NOT alone, NOT going through all this alone! You are so brave to share so much. I have always enjoyed your web pages so much through the years. I will be holding you close in my heart and manifesting all good things your way on your behalf!
Praying for you to have a textbook perfect surgery & to heal up beautifully w/no bad side effects!! You’ve got this girl!!!
I will be keeping you in my heart and prayers for the surgery to go without incident and for a comfortable gentle recovery. ❤️❤️❤️
I will miss your posts bc I LOVE them so much but I am praying for you and will be so happy when you start again healthy and well! Praying for you and sending you healing vibes!
Hoping all will be well for you. Thank you for sharing your story.
I had neurosurgery in December. I was leaking cerebral spinal fluid into my middle ear. 2 years I thought it was an ear issue. I had a tube put in my ear in August ‘24 due to recurring fluid in my ear, leading to ear infections. I had to wait 8 months to get an appointment with the neuro-ENT my regular ENT referred me to.
During that time I was having debilitating headaches .
I had CT scans, MRIs, and Lumbar punctures . Part of my brain was poking out of my skull, causing the CSF to drip into my ear. Once the tube was put in place, I’d wake up with my pillow wet, and running down the side of my face.
8 weeks ago the neurosurgeon tucked that little part of my brain back into my skull and sealed it up. Your situation is much more serious but may you have the support and success that I experienced. Praying for a full and swift recovery for you.
Thank you for sharing this part of your life with all your readers. I am so very sorry that you have to deal with this surgery and every scary thing that comes with it. I hope it brings you some comfort to know that like so many others, I will be praying for you.
Thanks for sharing. You are in my thoughts. Here’s to a speedy recovery!
Wishing you a successful procedure and an easy recovery. You’re beautiful and brave and you got this!
Alexa, oh my dear girl. I’m so distressed to hear this news and I grieve for you. I hope you’re not battling this medical calamity alone. I can only imagine the pain and suffering you must be experiencing.
I dare say this will be another long and challenging journey for you yet again from what you’ve shared.
As an avid reader of all your wonderful posts I now appreciate them more as I realize you must’ve been researching, writing and post under such great stress.
I hope there will be a safe and smooth surgical outcome and recover for you. From reading your story/history I can see what a courageous, tenacious warrior you’ve been with you multiple past afflictions.
Please know that I will keep you in my thoughts and prayers. Take care now❤️
Lord…You’ve been through so much…We are keeping you in our hearts…You get better…Take care of yourself…and I pray your recovery is peaceful and smooth.
Oh my goodness. You are dealing with a lot. I am also a big girl who had a tumor removed from my spine. The pain leading up to the surgery was unspeakable. I can’t imagine how you kept going. It left me mentally scarred. I will be praying for your procedure and your recovery and look forward to reading your book one day.
Hi Alexa, As someone who lives with a similar chronic illness caused by a non-cancerous tumor in my pituitary that will require surgery this year, I 100% relate. I see you. I feel you. I fight my doctors too. I will be praying for you and sending you brave vibes and lots of love so you heal quickly and are out of pain! You have a book to write. ❤️ Deb
Alexa,
You are a remarkable and inspiring woman. My prayers are with you.
Prayers for you are going up. I pray that you may know and feel his healing touch.
♥️thank you for sharing- I am so sorry & I’m sending all the good vibes. Your talent is incredible-
Dear Alexa,
I SO enjoy your posts and all the amazing research you do to bring us unique and lovely ideas for living our best lives. Devastated to hear your news and all the agony you’ve already suffered, I am hoping you have a dedicated support team behind and beside you to deal with this latest crisis.
I’ll be thinking of you and sending healing thoughts and big hugs! Please keep us posted.
STAY STRONG! YOU CAN DO THIS!
Sending light and love ! I too have a clotting disorder and a filter… have blown clots in all limbs and lungs. Long story …3 months in the hospital then a step down facility to learn to walk again. You WILL come out of this on the other side . Your gift will be to educate and guide as you indicated. Positive thoughts and vibes ..Love light and harmony. I believe in inner strength and you possess it! Look forward to hear about your recovery … will be thinking of you !
Alexa, wishing you all the best tomorrow and you’re in my thoughts! What an ordeal! I hope everything goes smoothly in the next several months and a smooth recovery! Thanks for sharing and take care!!!
Those of us who have had to learn to navigate the medical system (while in pain & suffering) rejoice at the thought of a voice sharing the absurdity of weight bias and the resulting dismissal of very real afflictions. Being your own advocate is one thing, but swimming upstream while seeking relief is just beyond comprehension. I’d be happy to share colorful anecdotes for your book. Sharing your journey and insight will be inspirational for many. I used to think “this could only happen to me”, but I have since learned that it is altogether too common and needs to be exposed. All of my love and prayers are with you to recover and heal well. ❤️
Thank you so much for sharing your personal story! I really enjoy your post and praying for a speedy and safe recovery. I’m also praying for healing over your body. God still have BIG plans for you! Trust in GOD he will never let you down! Take care
I just started following you recently, Alexa, and I’ve been blown away by your talent in finding fashion that helps followers show their best selves to the world. Consequently, my first thought was a selfish one…… until I read the ‘long version.’
You’ve been through so much already and and to go throw this……life just isn’t fair sometimes.
Please keep us posted – if you can – as you navigate this new health journey. I will be thinking of you and sending healing thoughts your way.
Thank you for sharing the good, the bad and the downright ugly; I hope that it will ALL be good going forward. You deserve it.
Blessings….
You are in my prayers !!!!!!!! Please take the time to rest and recover. Please be patient with yourself and do whatever you need to do for YOU. We will all be here sending love and light to you.
Della
Praying for a successful surgery to heal your body. Praying for the Lord to heal your mind and soul. Chronic pain does a number on your mental health as well. It is hard to stay hopeful when you are feeling helpless but I urge and pray for you to be and stay hopeful. Hugs.
You are a warrior with a beautiful and generous soul. Praying to all gods or God whatever you call her to give you surgery with no complications or surprises and a speedy boring recovery. We all look forward to hearing from you, but also know that you prioritize self-care and healing. You are loved and admired by so many.
Peace and good health😽
You and your family are in my prayers and I wish you speedy by health and safe recovery.
I hope everything went well today. Sending you my prayers.
I just wanted to reach out and let you know I’m thinking of you during this time. Hearing about your spinal cord tumor and everything else you’re navigating made me pause — that’s a lot for one person to carry.
Please know that the community you’ve built through your writing genuinely cares about you as a person, not just as a creator. Your voice has meant something to many of us.
I hope you’re surrounded by good doctors, steady support, and moments of real rest. Take all the time you need to focus on healing. We’ll be here whenever and however you return.
Sending strength and sincere encouragement your way. 🤍
I hope all goes well. I will say a prayer.
All the Best Alexia and thanks for sharing your journey. Very inspirational. Continue to be strong and we cannot wait to hear the rest of the story and sharing good ideas. We count on you. Hugs
I’m so sorry for all that you have been through. It takes a lot of courage to go through all that you are and still share with us your journey. Hopefully this will help others who are going through similar struggles.
Wishing you the best and a speedy recovery.
Alexa, first I am so very sorry to hear your are experiencing this extreme pain and health hardships. I will be praying for a safe, successful, and as easy as brain surgery can be surgery with NO complications from the surgery or related events like the IVC. I have read about some of your past struggles and have sympathy for them. And I share your anger at the bias and ugliness and wrong attitude of discrimination from healthcare workers! It is wrong!! Thank you for sharing your experiences-I know it takes a lot of courage to say things like this so publicly.
Please, from this long-time reader, take your time to rest and recover and come back how and when you feel that you can. In the mean time I will take much inspiration from prior posts, especially your excellent taste in accessories!!
Hang in there, Alexa! We’re all pulling for you.
I have no words other than to wish you and safe and successful surgery. I’m a praying person so I will pray for God to direct this surgery and bring you out safe! I understand your frustration with the medical system and I have found after working 16 years with a wonderful doctor who imparted his wisdom to me by saying that I know my body better than anyone and if I feel a Dr isn’t listening to me and a situation is getting worse to find another Dr because in the end they are educational guessers, if they have a test in front of them(these days lets hope it’s our test) then they can make an accurate diagnosis.(all His words not mine). He’s gone on to Glory but his words remain with me. I think when we understand that we are paying these people loads of money that we have a choice on whom we see.
You have made my life better! You have given me confidence! I wish to give the same energy back to you and am praying for you as you continue on your path to recovery.
Alexa,
You crossed my spirit today. I pray that you are recovering, and feeling well today. I know that healing is a process, just know that we are praying for you. You are like by shopping bestie ( in my head…) I miss your posts.
Alexis – I’m so sorry to hear your health problems. May God bless you and heal you.
I wanted to let you know how much I have enjoyed and used your advice in selecting outfits. One of my most favorite is from several years ago – J Crew white vintage jeans and blue and white stripped t-shirt. It has been a mainstay of my wardrobe for several years. Timeless
Here’s hoping you are back to good health soon.