So. First things first, I am my own version of fine. A little better than fine actually. Before I continue this post, I want to get that out there.
Saturday morning I woke up around 7:45 and I knew I'd have to go to the bathroom soon (long, complicated story about my condition that I don't share), so I played around on my phone a bit, then put it down to transfer from bed to my chair.
I couldn't move my right arm. Okay. I couldn't move my right leg. Okay. I had complete paralysis on my right side. Okay. I allowed myself to completely and silently panic for 5-10 seconds per my agreement with myself, and I waited a few minutes to see if it would subside.
I woke Preston up, and my speech was slurred. I managed to get out "Preston, something is wrong" (which I have now learned is an awful way to wake someone from a deep sleep) and explained what was happening. He had me sit my bed up and try to move my right hand, which I could do with much difficulty. I was able to take a drink and not dribble all over myself, and within ten minutes from onset the paralysis was gone but my right side was extremely weak. Weak for me. Weak like baby.
After going to the little disabled's room and thinking and praying about it, I decided that I wanted to be seen and evaluated by a doctor, and since it was Sunday, that meant another visit to the ER. Honestly, I always get such amazing treatment at the St. Vincent LR ER that I was nonplussed about going but admittedly a tiny bit terrified about why.
(Backstory break! My most recent MRIs have shown evidence of previous strokes. Not TIAs, as I originally thought, but actual strokes. Obviously they have not been serious, because aside from maybe possibly the facial drooping, I don't have any lasting damage that I'm aware of, except the dead parts of my brain. But, like, 🤷♀️. When there are benign tumors on your brain, it's hard to tell what is and isn't related to the neurosarc.)
Based on my past and present and the knowledge that I was not at "Bridget-level" normal, I wanted to see a doctor. Worst case scenario, it was nothing and they send me home with a sticker.
We got to the ER and it was fairly empty. I signed in and went immediately to triage, and then immediately to have an EKG done (which, in case I forget to tell you later, was fine), and then when the phlebotomist was checking my veins they came in and told him not to bother because they had a room for me and would access my port for everything. (YAY lil port! Good job!)
So I am whisked away to a room and get onto a gurney which, I kid you not, had a crank to raise and lower the back. Apparently I was also whisked away to 1956. (Stay tuned for my massive rant about why a hospital has to hold onto every piece of equipment for as long as possible but I've never seen crank powered automatic rifle. It'll be a doozy!) I get settled, I meet approximately 19 people who introduce themselves kindly but I will never remember their names or functions. They hook me up to the BP cuff and sticky leads to something and those cool pulse ox thingies now that are adhesive so you can actually move your hand without the machine thinking something is terribly wrong and you have died but really you're just trying to get under the blanket, MACHINE. Geez.
I'm sorry, where was I? Ah yes. So they access the port to get blood and administer contrast for the MRI. I had a CT scan (Bridget-fine) and a brain MRI (Bridget-actually looking pretty good). The port needle hurts like a bitch when they put it in because it's nine feet long and shaped like a witch's crooked finger. BUT! My arms are bruise free and I no longer feel like the port was done for nothing. If all that ever happens is easy blood draws, it was worth everything.
A neurologist came in and talked to me and tested my strength and seemed really confused that I didn't have a neurologist and I was like, "Working on it, hot stuff" and my main ER doctor was amazing. He listened to me, and when I told him that I waited to see if maybe it was sleep paralysis he looked me dead in the eye and said, "Don't ever do that again. Don't. Ever. Do. That. Again." and I said "yes sir" like he was my dad. It was an intense five seconds.
Long story not even remotely short, the ER doc, Neurologist and Hospitalist on duty (who was also there when I had my blood clot) agreed that after taking into account what I told them and what they saw on the scans, it was not a stroke and was more than likely neurosarc related. The neurosarc can cause swelling, and meningeal swelling can cause excruciating headaches, and can cut off oxygen to the brain and mimic a stroke, but it doesn't leave any dead tissue behind. (The More You Know 🌈)
At first they were going to keep me overnight for observation, which I did NOT want to do, but Doc came in and said that they all felt I was good to go home. And he asked me if I was okay with that, which I thought was awesome. So after about 7 hours we left and I’m still slightly off, but I felt so much better.
Two moments that really stand out for me: 1) There were probably three nurses, the CT tech, and Doc in the room and they were prepping me to go CT. When I'm scared but trying not to be, I tend to focus on minutiae to keep myself sane and on task. It suddenly occurred to me that not only had my insurance changed since my last visit but now it was Medicaid and I told them that and asked if they needed my card and they all just...looked at me. The CT tech literally said "We'll worry about that later. Right now let's worry about your brain." And I was like, "Oh right. That ol' thing."
It may seem silly but I seriously wondered if they needed to stop and make sure whatever they were going to do was covered or whatever, which is ridiculous because they can't refuse you treatment even if you don't have insurance, but this is the medical culture that's been built for us. Normally I don't worry about medical bills because you can't squeeze blood from a stone, but it's still so effed up.
2) Three different doctors and even more nurses listened to me, and in some cases deferred to my knowledge of neurosarc because it's so rare that very few doctors or nurses have a working knowledge of it. But I have been doing this for almost three years, so I know lots about it. I also know my body, and what's normal and abnormal, and in some cases I know what I do and don't need. It's a sad testament that I am really impressed by that, but I am. The computer spit out its little blurb on sarcoidosis and the discharge nurse was like, "We have some info here about sarcoidosis" and I didn't mean to but I laughed. As kindly as possible I told him we didn't have to go over that because I've been diagnosed for over two years and all that paperwork was going to mention was pulmonary sarc which doesn't help me at all because neurosarc was a weird and rare beast, but thank you! Then he rolled me out and we got food because we were both so hangry and then I slept the sleep of the comatose for about five hours. I’m up now because I had to do my methotrexate injection, but once I wrap this up I’m getting some chocolate milk and heading back to bed. Bastian is not so patiently waiting for me to do so.
ER visits are so exhausting. I am so blessed to have access to quality healthcare, and access to information about my disease.
Also, I really really really want you ALL to take this lesson thingy away from this post: Copy it, print it, hang it on the fridge, get a tattoo, I don’t care. Know this:
YOU ARE YOUR OWN BEST HEALTH ADVOCATE.
If your doctor doesn’t listen to you, find a new one. Yes, it’s a pain in the ass. I know, I’ve been through it often, but doctors don’t know everything. They are extremely educated and knowledgeable, yes, but I can pretty much guarantee that combined Preston and I know more about neurosarc than most of the doctors and nurses I saw today. Sarcoid itself is rare, and only about 15% of sarc patients have neurosarc. It’s not that hard to understand why every doctor wouldn’t know everything about it. My last ER doc told me he probably spent a week on it in his residency. We’ve been reading everything from the Mayo Clinic and the sarcoid center at Cedar-Sinai in NYC (love you Cathy!) and other places and I’ve been living it for years.
I repeat: IF YOUR DOCTOR REPEATEDLY DISMISSES YOU AND YOUR CONCERNS, FIND A NEW DOCTOR. Just because you’re not an MD doesn’t mean you don’t know your body. This goes double if you’re a woman. You deserve to be taken seriously because it’s your body. You live there. And it’s your job to take care of it.
It doesn’t matter if no one else thinks anything is wrong: IF YOUR BODY IS TELLING YOU SOMETHING IS WRONG, SEE A DOCTOR. It doesn’t matter if everyone says it’s “all in your head” because a) literally everything is all in your head because that’s where your brain lives, and b) even if it’s “all in your head” it’s still real. If you hurt, the pain is real. If you are having strange symptoms, those are real. If they come out in a few years and say neurosarc is completely psychosomatic, it doesn’t matter. I’m still in this chair. I still have these tumors.
If you’re avoiding going to the doctor because you’re scared of what’s wrong, go anyway. GO ANYWAY OMG. I put off seeing my doc about my weird leg problems because I was absolutely terrified it was going to be ALS. Not my best decision. And then, for three months I was repeatedly told that I had fatal brain cancer, so. I get it. I promise. But if something is really super bad, the sooner you find out and start treating, the better. Especially something like ALS or neurosarc that can take years to diagnose and tons of different doctors.
And lastly, BE HONEST WITH YOUR DOCTOR. Embarrassed about something with your lady parts? I don’t care, they don’t care, they’ve heard it all before. If one of y’all dies from cervical cancer because you were too prim to talk about your vajaje, I will be so pissed. Guys, some of my symptoms and side effects were SO EMBARRASSING AND HEARTBREAKING at first. I never, ever wanted to talk about any of it, with anyone, but I had to. And honestly in a few short months I went from shame crying in the shower for 30 minutes to looking at a doctor I had never seen before and saying, “Hey, yo, what’s up? My bladder muscles aren’t working right now and it’s getting to be a puddle problem.” Because peeing your pants, despite what Billy Madison will tell you, is not cool. It sucks, and it’s a damn mess, and if I can do something about it I’m going to.
Eventually you will lose the ability to be embarrassed about things like that. I can no longer muster one single give-a-damn about pretty much anything. Stuck on the toilet in a country club because there are no bars and one of the cooks has to come into the ladies and help me stand up? Eh. 🤷♀️ And medically, I seriously said today, “I’ll take off whatever you want, let’s just do this.” As a girl who used to sleep in her bra because she was so ashamed of her body, I’m now a medical exhibitionist. The MRI tech was very careful asking about my weight, and I said “Look. I have no medical shame. Ask me anything, tell me anything, squeeze me into that machine like a sausage, I don’t care. Just take care of me as best you can.” And before the MRI, I told him what I needed: a washcloth over my face so I didn’t open my eyes and go all Wicker Man, and something to hold my knees together because now I am hella bow-legged and I’m not fighting to keep them from falling off the table and messing this sausage test up.
And I’m not special. I don’t have some magical superpower that makes me able to do this. It’s been developed over years and it helps that I have a sense of humor about all of it, but I had to start at the beginning just like everyone else. In 2015 I was very “well, um, see, my leg is a little weird and I’m sure it’s nothing and I’m sorry to waste your time.” Now I’m telling MRI techs “No, I don’t need a blanket, I’m hot as hell and about to be reborn through a magnetic vagina, so you just deal with my fat thighs, okay? Thank your God I’m wearing shorts so you don’t have to see my granny panties. LET’S DO THIS.”
If you’re reading this, I love you. Some more than others, sure, but I care for all of you 😘 I want you to be healthy. I want you to be empowered. I want you to get the care you deserve. So this one time, listen to Aunt B because she knows what she’s talking about.
