On the 15th I had an MRI appointment. I woke up that day with wobbly legs and figured it was good my neurological symptoms were acting up. Maybe this would explain to my doctors what was happening with my body. I knew I was walking weird, and the heat wasn’t helping things. By the time I got to the hospital they had decided it would be better to wheel me to the MRI than have me walk. Afterwards I was sent to the ER by my neurologist, and sent home without an explanation. I was given a walker (with no wheels), which just felt like a convenient way to break teeth. A friend drove me home.
On the 16th things got worse. My arms were impacted and my hands felt like someone was mashing on my funny bone. By the end of the day I called the neurologist’s office, and the nurse said to return to the ER, and have them call the doctor’s personal line. I obtained a ride, somehow made it into and out of the car. I was in agony. The ER didn’t do anything. The doctor did a basic exam, notice I had out of control tremors, no muscle control, an when he did get a hold of my doctor decided to send me home anyhow with instructions to follow up on Thursday (two days later) since I already had an appointment.
My roommate picked me up and had to load me onto a luggage cart to get me up to our apartment. A friend came over and helped me undress and shower. I spent Wednesday in bed, surrounded by food and drinks. I let the dog out on the porch twice, falling hard once while I did it. In typical Behcet’s fashion I felt like I was dying without a reason. You get anxiety, like maybe this is permanent, maybe this is the lesion that ends your ability to walk, or see, or do something you’ve come to take for granted.
On Wednesday night my friend (the guy) came over and was pretty much ready to take me to the ER that moment. I insisted we stick with seeing my neurologist the next day because I refused to go to another ER and be sent home to to wait for the impending appointment. By this point I couldn’t open anything but my thumb and pointer finger. My core was starting to twitch with the responsibility of holding up the rest of a body that refused to coordinate itself. I would lay calmly for long enough and the tremors would stop, but I would feel tingly and floaty. The second someone asked med to move, or moved me, the shaking and tensing would begin again. The neurologist immediately seemed to be out of his league and shocked at the extensiveness of the movements. He told me initially we could try a medication used for Parkinson’s but that he wasn’t sure it would work. by this point I’d been constantly moving for 3 days. I broke down, the sobbing started which made the shaking worse. I couldn’t feed myself. I couldn’t walk. He told me the medicine would make me vomit, which made me wonder how I would handle the task of sleeping around the toilet that night.
I was sent to UCSD ER immediately.
The first ER doctor I saw wasn’t too big on the whole admitting me for sure process. He said that of course my doctor wanted me to be admitted but it was up to their neurology team to decide. The hospital was full, with some patients waiting in ER beds for 54+ hours just to get a hospital bed. I didn’t care. I was done. My body hurt. I wanted someone to fix it or stop it. My friend (the guy) stayed with me until neurology 100% said I wasn’t going home. I may have to spend the night in the room in the ER, but I wasn’t leaving the hospital until I’d been fully worked up. Another friend came by with my original MRI even though the hospital planned on doing a repeat exam as soon as possible.
They moved me that night to another ER room with a hospital bed, and a TV. Medications were adjusted, but in the morning it was clear that had only made things worse. I woke up with my jaw locked. A team of neurologists came in, and so began the process of becoming a science experiment.
When you have a rare condition, you attract attention, and it’s not good attention, at least it doesn’t feel that way. While I was pleased to have teams of doctors working on my case, it started to become dehumanizing. Tests, family history, lather rinse repeat. The following evening I had a hospital bed, and a relaxed jaw. My body was still useless.
My roommate was an amazing woman, who trained service dogs. I told her I didn’t mind if she was up early watching TV, or up late watching TV, that at home I had the TV on a lot and it didn’t bother me. We chatted, eventually peeling back the curtain. My MRI was for Saturday morning (I think). Her dogs were coming to visit, and I was beyond excited. Then things got dicey. I had to receive all of these drugs for my MRI so I was up most of the night thanks to the steroids. The Xanax/Benadryl cocktail did make me sleepy, but I still needed to be restrained for the MRI because my movements were periodically uncontrollable. Even asleep, the noise from the MRI would startle me, and cause the jerking to begin again.
Things got bad. I woke up and they injected the dye, and I felt my stomach drop. I assumed it was just from being on my back so long, and the IV injection. Once back in the tube, I realized it was an aura. I was going to have a seizure. In an MRI tube. Restrained. I focused on breathing, I just needed to stay calm and squeeze the emergency release ball. Only my hand was locked, and I couldn’t. The last thing I remember thinking was I hope the padding is enough to protect me as I let go of the ball.
The rest was told to me by my friend Amy, and others who were around. I apparently took the technician about a minute to notice the small movements were getting larger. When the took me out, I was in full seizure, strapped on my back, choking on saliva. They unlocked parts of my restraints, got me to a hospital gurney, and called a code blue. My heart rate was erratic, my oxygen saturation was okay, with oxygen and suction, but I did not, in general, look good. I guess that is kind of inferred by the code blue.
For some reason they’ll start working on you in a hallway, but they take you back to your room to process the code. They pulled my friend Amy out, and closed the curtain. They charged the defibrillator, and were arguing over whether I needed to be intubated. Amy was screaming, having heard the code blue call through the hospital when I was in MRI, and so she just knew it was me. She was shouting at nurses asking if I was okay, but they wouldn’t her in. She said all she had seen was my limp white body on the gurney, with white foam all around my mouth.
I was lucky. The massive doses of seizure drugs stopped the seriously long seizure that had nearly stopped my heart, and my breathing. When I woke up, for some reason the only thing I could think of was the dogs. I kept saying dog, and the kept thinking was confused. MK, my roommate let them know I wasn’t nuts, that she had service dogs with her, and I kept saying dog. Rocky, the sweet lab I’d been interested in, came over, and they were the first eyes I saw after coding. The concern in his face for me, a human he’d never met, struck me to the core. He rested his head on the gurney and I drifted off to sleep.
They moved me to a private room, one step below ICU. I got to visit the next day with Rocky’s brother dog, who was with a sweet man and his wife. My friend Amy, pushed to her breaking point, had verbally assaulted my friend (the guy) into coming to the hospital because she needed a break. She couldn’t stop seeing me the way she’d seen me, so dead.
Lumbar punctures. Blood draws. Eye exams. Another MRI. Two more seizures, one major, one minor. Medication adjustments. Three days of hard IV steroids, and finally I was discharged.
Officially? Probably Behcet’s, but they can’t prove how or why. I do have seizures. The doctor told me the pseudo seizure or anxiety/conversion disorder diagnoses that had been previously suggested, were absolute garbage. Everyone who witnessed me seize, and the description of the partial seizures, was enough for him to realize this was actually happening pathologically, and not emotionally. Nobody knew why I had nystagmus when I was admitted, but it was gone by the time the steroids and eye drops had begun.
The eye doctor found anterior uveitis, which explained the sudden blurred vision. This means a month of eye dilating drops when my eyes are already dilated, and steroids drops for at least a week. He said conclusively it was Behcet’s related, completing any other questions doctors had regarding the validity of my diagnosis.
I’m lucky I had friends to visit, to keep me grounded. I lost count of needle sticks. The blood thinning injections, blood sugar checks because of my high doses of steroids, insulin to adjust my levels, and of course blood draws, and IV replacements. There was talk of placing a PICC line, or other venous catheter because it was becoming increasingly difficult.
Now I’m adjusting to a new life. Waiting to see if I get to the clinic at NYU. Waiting to call Monday to set up my follow up appointments. Accepting I need the walker to get around, and that I am very weak. Desperately trying to raise funds to cover the expenses I’ve been left with since dis ability has been screwed up, and not all my medical care was covered. I also really feel like Rocky is the service dog meant to be with me. The way he looked at me with such concern, I just felt an instant bond. I know I’d be lucky with any of her dogs, but Rocky and I had this connection like we wanted to care for each other.
I made a Go Fund Me, but I worry nobody will contribute. I keep staring at my walker, at my life, and hoping things improve, but knowing that until I get to NYU I won’t know the significance of all of it. I know blood work is coming, lots of it, and that through it all won’t have income. It’s scary, and terrifying, but it’s my life, and I have to accept it for what it is.
Bruised. Battered. Wobbly. But not Broken.