Support Danielle and her Family on her Medical Journey

Hi! My name is Danielle. I’ve been on quite the journey since February 2022 when both feet slipped out from under me at the same time while walking on a wintery sidewalk. I was unable to catch myself, and the first thing to hit the sidewalk was the back of my head. My family has been an incredible support to me, from being in hospital room after hospital room and doctors office after doctors office with me, to driving me around because I’m not medically allowed to drive due to my neurological symptoms, to giving me places to stay when my housing got incredibly unstable, to trying to help me financially in anyway they can as things have continued to be difficult for me in so many ways. They actively ensure me that I am not a burden, and I know they mean it and do everything they do for me purely out of love. But I see the sacrifice and the exhaustion when they step in to support me because this journey has been a difficult one for them, too.

None of them know that I am making this go fund me, and if I told them about it before posting it they would certainly tell me not to. I can hear my Mom and Dad “No, don’t do that! Everyone is struggling right now. We will find a way.” My family is full of givers, and none of us have ever been good at asking for help. But I really need the help right now. The medical bills from the many different specialists and medical facilities I’ve been referred to, travel and lodging costs when going across the state and across the country to those facilities and specialists, the cost of medical insurance to be able to go in the first place… I have completely drained every bit of money I had in my savings, and am embarrassed to even admit how much this has me feeling like I’m drowning. But this isn’t even about me because it’s my family who has always stepped in to help in anyway they can. I just can’t continue to ask them for help and watch them make the sacrifices they do without trying to do something to relieve the burden (even though they would never, ever feel or say that I’m a burden). I love my family so much and seeing them struggle through this journey, too, really breaks my heart.

So, whether you are among the fortunate who have a little bit of money to spare or if you are also on the struggle bus right now and all you can do is share this, I would be incredibly grateful for any form of help you are able to provide.

If you'd like to know more details about my medical journey and life now, please continue reading.

The initial brain injury occurred in February 2022. Following the injury, I've experienced daily symptoms (with varying degrees of frequency, duration, and intensity from day to day) of: pressure headaches, icepick headaches, dizziness, vertigo, nausea (vomiting at times), difficulties with balance, tremors, speech abnormalities, vision abnormalities, temporary loss of vision, temporary loss of hearing, fainting, extreme fatigue, insomnia, emotional dysregulation, intense anxiety, retrograde amnesia, difficulties with memory, brain fog, and intense, random pain sensations across my body. I was initially diagnosed with traumatic brain injury and post-concussive syndrome.

I was out of work for 2 months at the time of the initial injury and returned to work in April 2022. At that time, I was working at an inpatient substance abuse and cooccurring mental health facility and was determined to get back to work. I worked through the rest of 2022 and started attending graduate school for a master's in counseling, specializing in clinical mental health counseling.

Throughout that time, I was also attending weekly physical therapy, occupational therapy, cognitive behavioral therapy, multiple specialist appointments, and even though I would experience some symptom relief for brief times, my symptoms began to increase in frequency, duration, and intensity overtime. And by August 2023, I had reached a breaking point with my symptoms. I was hospitalized in the month of August and diagnosed with Idiopathic Intracranial Hypertension. I had to stop working in August of 2023 and then had to put a pause on graduate school.

Beginning in August 2023, I was referred to multiple specialists around West Michigan that began to question my diagnoses. I was told I was crazy over and over, referred to psychiatrist over and over, told that there is actually nothing physically wrong with me over and over. I knew they were wrong, but after going to University of Michigan and hearing the same thing, I had nearly given up. I don't mean that figuratively, I mean that quite literally. I was in a very dark place with being in pain every day, not being able to work, not being able to continue with my masters, having to move back in with family, losing multiple relationships due to my disability, becoming more and more certain that I was losing my sanity and grip on reality. And I really didn't see how things could get better. I'll be very open and vulnerable because I think it's important to talk about. I was the closest I've been to talking my life then. I am incredibly grateful to my family for being my biggest reason to hang on during that darkest time.

Anyone who has lived or lives with chronic pain and/or chronic illness knows that place in one way or another, and if you are relating to this as you are reading, please know that you are not alone in how you feel. I hope this also encourages you to talk about how you're feeling. Saying the words out loud can often be the hardest part, but please be brave and talk to someone you trust to get through that first hard part. I see you and your fight. I am so proud of you. I promise you are loved, and your life is worth living.

By late 2023, my primary care physician was the only healthcare professional who was still fighting for me and not tossing me aside. He referred me to Mayo Clinic, and even fought to appeal Mayo's denial of my initial referral after the misdiagnoses from previous specialists became an incredible barrier. I am so grateful for my primary care physician. Truly, his determination to help me and his unwavering belief in every symptom I reported helped tremendously in saving my life.

Being a Mayo Clinic patient has been quite the adventure. Because of my extreme sensitivity to pressure changes, flying is not an option for me. I travel mostly by train, but the journey via train between Michigan and Minnesota takes just under 24 hours and takes way too much out of me to be able to do it more than a couple times per year. So, I made the difficult decision to move to Minnesota once my referral to Mayo Clinic was accepted because of my travel difficulties.

If you have never been to Mayo Clinic, it is an unreal experience. Navigating the American healthcare system is disheartening at best, but Mayo Clinic is a profound exception to that. From the way they coordinate all your tests, appointments, labs, and imaging into one chunk of time that you're there to the friendliest and most knowledgeable healthcare staff ever, it has been such a blessing and privilege to be there.

My list of diagnoses grew significantly while at Mayo Clinic, and at first that was terrifying. Now, my perspective is one of gratitude. I am so thankful to have answers, to be validated that I am not losing my sanity, and to have a much less foggy vision of what moving forward looks like. My added diagnoses include: central sensitization disorder, fibromyalgia, chronic fatigue syndrome, and dysautonomia.

This has been an incredibly difficult journey and has felt impossible at times. But I am learning and celebrating that just because my life is different now, it does not mean that it is bad or somehow less worthy of living. I am immensely grateful to still be here to have this life to create joy in.

My life is now entirely centered around my healing nervous system. Although my symptoms have not improved, my ability to navigate them has significantly improved. I'm hopeful that my continued ability to navigate my symptoms and focus on creating joy will eventually lead to overall symptom reduction in the future. I'm taking this opportunity to reconnect with my creative self as part of my healing, including rediscovering my passions for writing, jewelry making, music, and painting. I am also working on outlining two books that I would like to write relating to my journey and to help others on theirs. My brain is not yet in a place where I can sit down and write for long periods of time (it has taken me days to write to this point), but outlining is something I can do right now.

I want to make sure that anyone who donates knows where their help and support will be used. Primarily, the funds will be used to cover medical costs, including past, present, and future medical bills and medical travel costs, repaying family who sacrificed and went without in order to support me, and helping to replenish the emergency savings funds of myself and family members that have been drained since February 2022.

Again, whether you are among the fortunate who have a little bit of money to spare or if you are also on the struggle bus right now and all you can do is share this, I would be incredibly grateful for any form of help you are able to provide to me and my family.

Thank you and much, much love to you all!