Hope After Twenty-Five Years

I apologize for my long absence from the blog for the last few months. It's been a hard summer and fall.

I will share more about my personal life in this post than I have in a long time—years, in fact. Most of what I share is surface or general, even when discussing my mental illness struggles.

For the last twenty-five years, starting when I was fifteen years old, I have been plagued with unexplainable medical problems. They're very real things that baffle doctors. They shrug, perplexed, and tell me they don't know what's wrong with me. All the tests come back normal—blood work, MRIs, CT scans, X-rays, EKGs, EEGs, etc.—all show nothing medically wrong with me. But there is something affecting my body, and the doctors can note it, but insurance won't pay for them to keep working on me to find the cause.

I've had incidents of not being able to speak, barely able to walk, arms going numb and lifeless, sudden onset of a severe case of hives with seemingly no cause, violent trembling and shaking that lasted for hours, and so many more.

Twenty-five years of baffling doctors. Those who weren't just baffled brushed me aside instead. They blamed mental illness, panic attacks, attention-seeking behavior, factitious disorders, and so on and so on. For twenty-five years.

In mid-July of this year, 2023, I started to experience weakness in my body. I would get dizzy and my legs would get wobbly. I'd have to sit until it passed. It worsened until I called my doctor because of my symptoms—slurred speech, confusion, and severe difficulties in walking. I was told immediately to go to the emergency room. My husband came home from work, and we rushed over.

I hadn't been sleeping well, as always. So the doctor told me to go home and get some sleep. If I didn't feel better the next day, come back. The next day, after ten hours of sleep, I collapsed outside our bathroom. My body went completely limp, and I fell to the floor, entirely dead weight. My husband helped me to bed, and I just laid there for several hours until I had the strength to get up again.

Once I did, we left for the hospital. They saw my dizziness and my oncoming migraine and determined it was either migraine or vertigo, didn't test for vertigo but diagnosed it anyway, and sent me home with medication that didn't help.

I just lived with the issue for another two months. More weakness. Barely walking. More falls. But also periods where I was able to do normal things like go for a hike in the woods to celebrate the fall equinox. I cooked and cleaned, but had to rest more frequently.

I've been waiting for an appointment with my neurologist since early August. It's this week. He's an expert in migraines and movement disorders, so he's the guy to see right now.

A little over a week ago, on the eighth of October, I reached my breaking point and had my husband bring me to the emergency room. He was sure I'd get brushed aside yet again, and of course I was afraid of it, but I always hope they won't.

They didn't. They listened to me for the first time in twenty-five years.

My emergency physician fought to get me admitted, and I spent the night in the ER before I was taken to my room. I'm still in the hospital as of writing this on the sixteenth of October. I've had a team of doctors—so far three hospitalists, a psychiatrist, and my neurologist consulting with them—and a slew of nurses and CNAs taking excellent care of me while they work to find out what's actually wrong with me.

At one point, they were starting to brush me off, and I was due to discharge I believe either Tuesday or Wednesday last week, and at the time, they were allowing me to get up to go to the bathroom as long as I had a nurse with me. When I got up to pee, I started feeling very weak in the bathroom and had to sit on the toilet to rest—not pants down, but like a chair. I wedged my elbow in the safety bar to lean against it, which turned out to be smart as hell.

I went limp, one of the dead-weight situations where I'd fall at home. The only thing keeping me from actually falling was my elbow. The nurse helping me immediately called for more help, and what ended up happening was three nurses used a crane made to carry patients to get me back to bed. When I was settled back in, my nurse said, "Well, I think you aren't going home today!"

I've now had three doctors mention a disorder classified as a rare disease: functional neurological disorder. It's basically where the nervous system doesn't react to stimuli properly. It's kind of half psychiatric and half neurologic. My life is a perfect storm for the development of this disorder and has been since I was a child.

The symptoms listed for this illness are ones that many of them I've had at least once if not multiple times, and in the list of possible causes, it could be a basic list of everything that's happened in my life leading to now.

This diagnosis is one of exclusion, so I will need to have some more tests done before a diagnosis is fully made. I believe one of the main exclusionary diagnoses that needs to be cleared is seizures. Once I have that, I may be able to have my diagnosis.

This week, I will be likely going to a rehabilitation facility where I will get 24-hour nursing care as well as physical and occupational therapy. Hopefully, I won't be there too long. After that, it will be home health care until I'm completely independent again.

After so many years--more than half my life--of being brushed off, brushed aside, or accused of awful things by medical professionals, to now have a team tell me "Yes, this is real. It has a name, it is treatable, and you will get well again."

I feel like I'm being seen as a human being with needs for the first time in twenty-five years. To explain how good that feels... I don't have words right now.

But I have hope, and that's huge.

Photo Credit: Lorenzo Cafaro