It Is Time.

This has been a very hard thing for me to do; write the history of my health issue. I had a fantasy of me writing about this from the second story of a seaside villa in Spain while I drink incredible, but cheap, red wine. Catching a nice buzz would allow the words to fall out of me into pools that I could wade in gently. I would float for a bit in sadness and then in gratitude. I am writing this to organize myself for a big doctor’s appointment in hopes to find something I can do to change the course of my health and hold on to my quality of life. Walking through this, I have to pull a lot of sticky band-aids off, but though it can hurt, it will be good for me.

Instead, I am in my crooked, little, old South Minneapolis home in the same sweatpants I have worn day and night for the last two days. I cannot open my window, not just because my city seems to have lost its head, but because it is January and it is freezing out. I am sober and will attempt to be all of January, so I am sipping on licorice tea to soothe my stomach which has been ripped to shreds on my last round of prednisone. However, I do still have my Spanish companion that watches me in silence as I write. Rafael’s permanent smile is a reminder to keep going. Cars driving too fast down Park Ave is the only reminder that life still exists outside our bungalow. I long, like all of you, to rejoin it again.

So here we go because it is time for me to try to tell when my Optic Neuritis attacks started, what happened in the middle, and then try to make some sense going forward. I won’t give my doctor this fluffy intro, but I will share with her all the details that stand out to me.  I hope they will eventually make a map to figuring out what is happening and giving me a way back out of this.

In the fall of 2017, I was working for an ad agency that had a client and a project that was very stressful for me. The logistics that made the project stressful are unnecessary, but it seemed at every turn the project would have another issue and I was just a disappointment to my team. Letting people down is one of my greatest fears. On top of it, for the first time in my nearly two decades of working in advertising, I felt like I was selling my soul to the devil. This is not just because I couldn’t buy into the mission statement of the client, but because I felt it was exposing my own biggest failure, the failure that I didn’t make a family.

I was working a lot between a handful of clients and very tired leading up to Christmas break. I got very sick with something respiratory. I was diagnosed with the flu, but the sickest I had been since about with Mono high school (I missed over three months of school and ended up in the hospital for a week in the end). I had viral hives and a boil physicians ignored. I was wiped for weeks, yet, I kept my plans to go to Nicaragua to travel for a month in January. I want to call out that traveling cheaply is something I am very good at. I stay in somewhat rustic places, use public transportation, and eat on a budget. My friend came with me on the first part of the trip and we went to a surf camp. I muscled through but fighting a strong feeling of lethargy. My friend left and I traveled to a remote island to scuba dive. Later that same day I went diving, I moved to a smaller island by boat. The next day I woke up with a dramatic vision change in my right eye which was like looking through blurry blinds.  At first, I thought it was a hangover as I drank a bottle of rum with two Israelites the night before, but as the morning wore on, I knew something was wrong.

Fast forward 36 hours later and I was in a hospital in Managua, Nicaragua. I was treated with three days 1000 MG prednisone and my first unnecessary spinal tap.  I think that two of my four spinal taps were unnecessary, and one was compromised due to prednisone. (Note, I asked three doctors if that would happen, they said no, and they didn’t convey the correct information, so I had a fourth tap.)

My sister had a research contact at the medical school in Managua and her contact sent over two doctors to the hospital who made sure I was getting appropriate care. As I was insured in the states there was opportunity to test me as much as possible providing income for the doctors there. I was fine but was aware that I was being closely monitored as I was not allowed to walk to the vending machines.

That whole experience of getting off that island to the hospital and my stay there will be a chapter or two of a book someday, but let’s just say it was rough. So was Delta’s lack of care when I was coming home alone and supposed to be providing me wheelchair transportation. The first person I encountered at Delta told me I was fine to walk to the gate. Because I was tan and fit, she wasn’t aware spinal fluid was leaking and causing the worst headache I ever experienced

When home, I first saw a Doctor at the University of Minnesota who was Neuro Ophthalmologist. My brother happened to have a pretty influential neighbor who got me in. I call out my siblings’ resources because I am aware of the privilege I have being white, of upper-middle class, and educated. Most people would never have access to these people or have them advocating for them. This journey has been incredibly difficult with the resources and awareness I have. I can imagine many people just give up because they can’t fight the system.

The University doctor was not in my network and after appealing it, I was able to get the appointment forgiven as the only Neuro Ophthalmologist in my network wasn’t available for a month and it was my vision at stake. The university doctor didn’t have much insight except that the next step would be to watch for markers of Multiple Sclerosis though it was noted that infection could have triggered the attack. This is also what the doctor in Nicaragua prematurely diagnosed me with when I was alone. It is a really cool experience to be told you have a potentially debilitating disease when you are alone in a foreign country…not. I have always really wanted a hoodie that said, “I went to Nicaragua and all I got was a $120 spinal tap.”

I had to have a blood patch due to the size needle used on me during my spinal tap in Nicaragua. After four, I can tell you spinal taps are a breeze. They wipe me out for a few days, but the procedure is fine. If a spinal tap is a 2 on the discomfort scale of 1-10, a blood patch is a 12.

I was next in the hands of a Neuro Ophthalmologist in my network who had his own MS clinic. I would argue this man should not be practicing medicine. He was hyper-focused on getting to a diagnosis of MS. He would be up to two hours late for appointments he put me through a lot of unnecessary testing, not explaining what the tests were for and never asking me how I was feeling. I went home with MS drug pamphlets more than once and when I would try to discuss preventative nutrition or alternative treatments to help me like acupuncture, he would naysay my efforts talking to me like I was not smart. I couldn’t register why were we talking about drugs when I was undiagnosed. I do need to note that I do have brain lesions, that have remained unchanged for about four years now, but no other markers of MS. One specialist feels my lesions could be caused by the migraines I had as an adolescent and young adult.

I will also say for the amount of questions I have asked about lesions; I don’t think we know much about them. And I let go of being afraid of them a long time ago. I now see them as a reminder that the body can heal itself and does things we have barely begun to understand.

On my own, I began eating anti-inflammatory and practicing verbal gratitude, yoga, and meditation every day. I went on a lot of walks and stopped investing in toxic people. I got more present than I had ever been in my life, never looking much further than the next day. Despite obstacles and the relentless bullshit of my international and local medical claims and stacking bills, I was really happy.

I ended up going to a neurologist who was an MS specialist and who studied at the Mayo and I distinctly remember her first words. “Your lesions have been greatly exaggerated. You had a very bad infection. How are you feeling?” I would estimate that since February of 2017 I have seen at least forty doctors and I can tell you that that doctor was the only one to ask me how I was feeling. Seven months after my first attack, I felt like I was running on 75% of what I had been before. This doctor validated that I had a bad infection and it would take me a long time to recover. She also said that she felt my chances of MS were “conservatively” less than 3%.

When you are in a medical crisis like this, regularly the pendulum sways hard. You are often given incomplete information or a projected diagnosis that is scary and sent off before you can process potentially catastrophic news. As you are perceived as unit, there is no time to even register what questions to ask. While I can say I have suffered from four Optic Neuritis attacks, I will tell you I have suffered more trauma than anything. This is everything from invasive testing, to doctors reprimanding me for advocating for myself, to fighting insurance for months on things they end up paying for. I believe this is contributing to my attacks.

With the news that MS did not seem to be a possibility in September of 2017, I booked a month-long trip to Thailand leaving a week before Christmas. The day I booked that ticket I met a man. Don’t get excited. This part isn’t great either. This man followed me to Thailand and there made me believe that he saw me as someone he could have a long-term future with and someone, he wanted to have a family with even if it came in alternative forms because of my age. While others kept telling me I was just not used to how much he adored me, I felt a constant nagging something was wrong and would wake up at 4:00 AM nightly. This man was having unprotected sex with people all over the country using things like funerals to cover his activities. I was not negligent in that I had all the appropriate conversations and I wasn’t weak or naïve. What this man took advantage of was my confidence and my independence. I didn’t spend all my time with him. I had my own life and I was sure of who I was and believed him when he told me he was happy to be with me.

I was devastated when I unearthed that he was just a web of lies. Not only had I been sexually violated, but I also couldn’t comprehend how he had so little empathy. He knew about my month’s long health scare and how much work I had to do to recover and yet his perversions and preferences just started another six months of unknowing of my health again. It was interesting as many women kept telling me not to be angry, yet I had every reason to be pissed off. Maybe others are more equipped to handle this level of abuse, but it made the entire universe feel unsafe to me. And most of all, I lost faith to trust in myself for a time.

At the same time, I had a maintenance man in my condo building who was overstepping boundaries with me and despite me approaching building management and then the board, it wasn’t stopped. I no longer felt safe in my home and everything in it felt tainted. As I prepped to sell my home and purge my belongings, I had my second attack.

I deep dove into healing for the second time. After that second attack I talked to a Neuro Immunologist about immune suppressive therapy, but she told me so many awful side effects that scared me and it scared me even more that I was still undiagnosed. I worked on my body and my life. I went so far as a female Shaman in Peru. I floated with little, living with a few friends and walked away temporarily from a career in advertising to work for a non-profit thinking my life needed some sort of purpose. Well, now I can tell it wasn’t what I needed.

In a year and after a lot of work, it seemed I had gained my life back and I was working hard at a long-term contract, loving my apartment. I was saving for a house and for a longer trip to celebrate how I found myself again and how good I felt physically. I left on January 15th, 2019 for a three-month trip starting in Spain. On March 15th I was fleeing Casablanca on one of the last planes out of the country before the airport shut down indefinitely. It sounds so much more romantic than it was.

I came home and found a happy rhythm in isolation. I cleaned out every drawer and that is where Rafael entered my life again. Previously he was used as a prop to scare the shit out of people. This time he became my creative outlet and my coping mechanism. We connected with people daily through our ridiculous life together.

On my 42nd birthday, at roughly 10:00 am I received a message from my landlord who had been a friend. I was told I would have to move from the apartment in less than six weeks in the first height of the pandemic. I imploded. I know that this should not implode a person, but note something, I again did not feel safe. My only safe space on the planet was taken from me. In these times of feeling unsafe, I have a visceral reaction. There is a hum, a ringing frequency, that hits me, and I can’t cool down. I even went to my acupuncturist during COVID-19 afraid of what the stress would do to me. My third attack was diagnosed three days after my birthday.

I want to note that a week prior to my big trip, I went to see my Neuro Ophthalmologist for a regular checkup in December of 2019. When I went back in on May 21st, 2020 when my attack was starting, my right eye showed 75% recovery from December 2019 to May 2020. This was two years after my first attack.  The recovery happened when I was wandering museums, walking miles a day, drinking red wine with dinner and eating pastries with coffee watching the world go by from cafés in Spain and Morocco. I have since lost most of the vision in my right eye but know that I am not going to stop believing and working to get some of it back.

My most recent and fourth attack started just before Thanksgiving 2020.  I ended up buying a house direct from the owner when I left the apartment. While she sold it to me far under market price, she violated the purchase agreement and left it completely filthy and full of her junk. There was about a month of just cleaning, getting rid of shit, and screwing thing back together. I am still getting rid of her shit. Had she stayed in the house; she would have ruined it. She and her sister also harassed and bullied me in the process while I was on a lot of prednisone. There was a lot stress around the house while I was just trying to land in a safe place.

So here we are now.  I am waiting for my insurance to approve immune suppressive therapy. I am trying every last-ditch effort to make sense of what is happening and trying to heal myself. I have been researching how toxic stress and trauma can affect us on a physiological level and I do believe that how I got wired early on is affecting how my body is handling or in fact not handling stress.

This is my perception and my experience from my childhood and the following statements are not meant to blame anyone or cause guilt, but this is what I have become aware about myself as I have peeled back the layers. I have always felt unwanted and have a fear being a nuisance and a disappointment. I felt that love was something I had to constantly earn. Despite a different façade, I never felt like I was taken care of or deserved to be taken care of from an early age.

I had a lot of short relationships with men not understanding why I wasn’t the type of person where things bloomed into more. I find myself looking at people in partnerships and with families like I was a kid outside the candy store without a penny to buy candy. I always wondered what other people that had made others want to have a family with them. I assumed I didn’t have it and therefore I sentenced myself to a life without one.

To this day I grieve this, and it feels even heavier in a pandemic and while having health issues. I have Rafael. We have Rafael. I also have friends who showed up. They cooked me meals, and took me for walks, and listened to me on the phone through hysterical cries, and loved me as prednisone turned me into a werewolf daily. They understood that there was still me in there somewhere. And I didn’t have to earn any of it. While prednisone induced suicidal thoughts daily and while it felt like my soul was severing from my body, I could still make out a little light on the horizon which was love and love that was all mine.

If other patients are reading this here are some things I want to note about my health. Other than a severe case of Mono at age fifteen, my health has been good. However, in my early twenties, I developed horrible cystic acne while abroad out of nowhere. I don’t often get sick and usually curb a cold in a few days. I can tell you the last cold I had was over the 4th of July 2019. I am careful about what I put in my body and things I use on it and in my home. In the last five years, I started getting random small hives. I have been tested for allergies and have none. My stomach is very sensitive when I am fatigued. It becomes extremely sore and bloated. My menstrual cycles can be so bad they can debilitate me. I have been on an IUD that was supposed to stop them, but that is not working. There are strange and random autoimmune responses in my family, but no one has MS or ON attacks.

And here is what is happening now. My doctors wanted me to stay on a low dose of prednisone while I wait for insurance approval for my immune suppressive therapy. Note, I was told this is a relatively cheap drug and approximately 18K a year. I have chosen not to take the prednisone to keep inflammation down while waiting. The more I have taken it, the worse I have felt. To me, that is an indication that my body can’t handle it. On it, I had debilitating body aches as well as suicidal thoughts. It was counter-intuitive to me to try to get a handle on inflammation when life seemed like quicksand that was swallowing me whole and I didn’t see a reason for living. Now I am just eating well, resting, exercising moderately and doing whatever I can to simplify while the world seems to be going to hell in a handbasket.

Anyone who is reading this that isn’t going through a health scare or has not had to, I hope you pause on a few things. One would be the reminder that even when people appear fine or you think they should be, they may be struggling. Also, that when people are on prednisone be conscious that they are probably feeling awful and like they are going crazy. And just in the day-to-day, when you look at people (not that people do that it anymore because I think they think they are going to get COVID-19) know that you have no idea where they came from and what they are going through. We all could just a dose of compassion even if we use that compassion on ourselves.

I promise any future blogs will not be so long. I just had to get the back story out so we could move forward. Rafael and I still have a lot of work to do before I can go back to surf camp, but know that I will fucking surf again.