< — Click play to listen to a deep dive podcast-like overview of this story.
July 3, 2024. What a day. I would say I remember it like it was yesterday, but I barely remember yesterday, so I’m not sure that a high bar. Like most stories, the true beginning to my story started before July 3, but I didn’t know it at the time. I can still remember sitting in my office. On the phone waiting for the nurse to “get back with me.” I wish I could learn to despise hold music less, but I don’t. Without fail there is the fake pause that happens, making you think they are coming back to you. Nope… you’ve just been listening to it so long it is going to restart the loop again.
I was on hold to set up an appointment with a new PCP. I was not a fan of my last one, well, at the time I suppose she was still the current one. I went in for dizziness in March and she told me it was my inner ear. She then investigated my ear, found a lot of wax as they always do, and preceded to scrape my ears to try to get it out. She even said “I don’t think it’s your problem, but we might as well clear them out.” Every time I went to any doctor and they looked in my ears they would tell me I had a lot of wax. They also consistently asked my “why do you have so much,” like it was a choice I made when they were handing out ear wax to double down on that. I just smiled and shrugged. She went to get the syringe and the peroxide so she could work on the ear wax. I have lost context to how long she was actually digging in my ears, or how long my ears bled for days and weeks after, but I eventually had to ask her to stop. At that point, she made sure to let me know what was wrong with my ears (my ear cannels are skinny, or face a weird way, or something) and that was why she couldn’t get all the wax out. I was bleeding from my ears, and she told me not to worry about that, and it would resolve. She also printed some exercises for me to do to help the vertigo that was being caused by some crystal thing in my inner ears. I did them. They made me feel miserable, but I did them. When I googled it, I found basically just what she told me, and some other exercises that felt slightly less miserable. After a month of doing these, and not really feeling much better, I emailed her. She told me to just keep doing my exercises, and it takes a while. By that time at least my ears weren’t bleeding, but I was noticing feeling really overwhelmed when I was trying to do things. I had never had vertigo before, but it did not feel “normal,” and even others commented that it seemed like I was having a hard time. I internalized that right away that it must be something wrong with me, and just kept doing the exercises.
“Hello? Jade?”
Oh! That was a real hold music stop! Yes. When I called to set up a new appointment with a PCP and told the admin lady about my vision and dizziness she told me she had to talk with a nurse. I was truly not expecting that! I had a client waiting in the lobby for her appointment with me, and I now was worried that I would be late for her appointment she was 30 minutes early for. I told the nurse what I could remember about my symptoms, when they started, how two days ago at Costco I realized that my vision was actually double, and my dizziness started in March sometime. I also told her that I had been very diligent to continue the work my last PCP did on my ears, and bought tools to keep those suckers clean. Haha, at the time that seemed important. -It wasn’t.
“Jade, I am so glad you called. Are you wanting medical advice?”
Wait, what? No. I just want a new PCP that doesn’t want to make me bleed from my ears. Please? I didn’t say that… would’ve been funny though. I was looking at the clock, and noticing we were getting closer and closer to the start time for my client. *still internal voice* You have about 5 minutes before I am going to have to listen to that dumb hold music again, please hurry. Just schedule me. At this point I don’t even care with who, or when.
“Based on your symptoms, we need you to go to the ER immediately. Do you have a ride? What ER will you be going to.”
Wait, WHAT?! The ER?! Why… Turns out, I may have lied to this nurse. I told her I had a ride, and that I would go when we hung up. Neither were true. I didn’t have a ride, I have a client waiting in the lobby, and now 3 minutes before hold music time. She told me she would call ahead to the ER, which may have been strategic on her part, but now I did feel obligated to at least make an appearance at the ER today.
Well, my client did get to have her appointment, so that was good at least. I feel like if this was a comic origin story I would say something like “little did she know this was the last time she would see me,” which I won’t say… although, it also true.
Have you ever felt so out of control and confused about something that all you can think to do is sit and play some dumb game on your phone while you wait for your brain to catch up to reality? That’s what I did after my client left. After a few minutes I figured if I was going to have to hang out at the ER I could play a dumb game there instead, and called my husband to let him know I was going to be late coming home. I feel like in his version of this story he’d add a “bless her heart,” or something in there. I should’ve known better than to think, “I’m just going to head to the ER and I’ll see you when they let me leave,” was not going to be cool with him. I felt bad, I knew we had the girls, he had school to focus on, we didn’t have a plan for dinner probably, and he can’t drive. I didn’t want to cause more stress for him. I honestly don’t know how he called his ex-wife, arranged for the girls to go with her, got an Uber and was in the waiting room with me in what felt like 4 minutes, but it did.
I remember feeling at the time that being there was silly. When they asked, “why are you here,” and I explained the situation I could feel their judgement. I don’t even know if they were actually judging me, maybe I was judging me. You came to the ER for something that started over 3 months ago, that you have exercises for that you have now stopped doing because you don’t like how it makes you feel? That’s dumb.
When they took me back, they told me they were going to order an MRI. At the time, I couldn’t remember the difference between an MRI and a CT scan, but I remembered I disliked one a lot more than the other. Turns out, it’s an MRI. Those are worse. I both felt like this is a waste of time and money, and if I’m here I guess we might as well start ruling some things out. I’m also lucky to have the most supportive husband in the world, that also used to do medical imaging, that gave me the hand squeeze and subtle nod that told me he was on the same page. MRIs, are worse than CT scans, for sure, they’re not that bad, but not ideal. I was also lucky enough to get the contrast that makes you feel like you’re peeing. If you haven’t had that, in promise you, I am not being dramatic. It literally feels like you’re peeing. Warm sensation and everything.
I am still not sure why the MRI tech thought putting a towel over my face would help me to feel more comfortable. It wasn’t a towel so much, as like tissue paper. I would not say that helped my comfort level. Being in that cold room with all the loud noises made me start to think, and the heaviness of what was happening started to set in. No one had told me what we were looking for exactly, but I knew we were looking at my brain. I’m pretty sure those are pretty important for… like… life and stuff. When she asked me what music I wanted to listen to during the MRI, somehow all music escaped my brain. I just said whatever the last person listened to was good with me. I think it was like 90s and 2000s hits or something? It was good, I don’t know who they were, but I am thankful they made a good choice earlier in the day! My brain made a game out of the different noises the machine was making, and tried to make it into the song. It wasn’t so bad, honestly.
When I got back to my “room” with curtain walls my husband game me a wonderful smile. I didn’t know why seeing him made me want to cry, but I did for some reason. Nothing had happened yet. We talked about the girls, and his school work, and the drunk guy in the “room” next to us. Multiple times someone came in to use the computer in our room because we were the calmest people in the ER at the moment. That felt like a win, and gave use a good chuckle. There is something about waiting for results to something that sure makes time stop. I didn’t even know what we were looking for, but I remembered hoping they could at least tell me something. I have been through this battle before of not wanting anything bad, and also not wanting “nothing” to be wrong when I felt so crummy. The ER doc came in, did a neurological exam, and things seemed to be okay. I don’t really remember being told either way, but I have had a concussion before and failed those things. I did not feel like I was failing, so I figured I must be okay! Well, I mean my vison was double and I was dizzy, but other than that.
Looking back now, I think the nurse coming in multiple times to tell me they should be coming in with my results “very soon,” and then asking me a bunch more times should have told me something. The hurry up and wait turned into a lot more hurry again. I remember he face, the doctor. Well, her eyes at least. She had such smiley eyes. “It’s not cancer.” I’m sure it was not the first thing she said to me, but it sure was the first thing I remember. I was so confused. Were we looking for CANCER?! Holy shit, they didn’t tell me?!? Wait… what?! I’m sure she said a lot of words after that. I did not hear them. The next thing I remember hearing her say was, “We found lesions that are consistent with multiple sclerosis.”
Well, the whirlwind in my mind and belly sure started now. I felt my face get hot, I felt the tears well up in my eyes (I’m confident she was still talking, but it was Charlie Brown *wah wah*), my brain showed me all the images of all the people I could remember that I knew had MS. It wasn’t a very long list, honestly. In high school one of my teachers, in college a woman living at a nursing home that I visited for my practicum, and a few people that lived in a nursing home I worked at before they job I had at the time. This didn’t feel like real life. I think my husband might have answered a question for me, or the doctor asked if I had questions. I just shook my head. What do you ask? “Are you sure?” “Hmm, can you take it back?” When she walked out, I looked at my husband and we both started crying. He hugged me, and we cried. We laughed at “it’s not cancer,” then cried, then laughed. I thanked him for not letting me think I could just hang out at the ER alone, and thought about how dumb I was to think I would be home before dinner.
The next doctor to come in was the hospitalist. I remember more talking to him than smiley eyes. He let me know that I had lesions in both space and time in my neurological system. Brain, neck, and spine. He said usually the treatment for this is 3-5 days of IV steroids, and staying in the hospital and asked me if I was willing to stay. I think that’s kinda funny now. Of course I’m staying, dude. This was the first time I heard, “don’t worry, the treatments for this are great nowadays. I know *fill in the blank random not very close relative / coworker / old neighbor / blah blah blah* who has MS, and you would barely know they have it. They seem completely normal! I remember thinking (again,) I was not doing this right that everyone else seemed to do so well with the diagnoses I now felt I was collecting, and I was struggling so much.
I was another hurry up moment. My husband, correctly, told me I needed to call my mom. Of course, I had not planned how to call my mom at 9pm to tell her I have an autoimmune disease, and would be staying at the hospital for the next 5 days. Nor did I plan for at that very moment for the nurses to come back in to take all of the vitals and do a ton of stuff with my IV so I could “be ready” to go upstairs, but it all happened at the same time. Poor mom. I had to tell her like 3 times because I was trying to get all of the other things done at the same time too.
Skin checks… that’s a thing. My goodness. Modesty was now out the window. Haha. The way those nurses moved my body and skin and rolls around. Haha. Glad my husband loves me. I had to have all yellow things because I was a fall risk. That also meant that I was not supposed to get up on my own or do anything on my own. I remember thinking, do you people realize that less than 6 hours ago I was someone’s therapist and I drove myself here? Haha, I walked myself in here, and did all of these things TODAY… and now I can’t fart without calling you. I tried to have a good attitude, and told them I have always liked yellow, which is true.
The next day was the fourth of July. I love fireworks. My husband knows that, and (see, this is where I would put in “bless his heart,” if I was him) he tried so hard to help me feel like we could have a normal time in the hospital together. He did his research about where the fireworks shows were, what we could see from the hospital, and all the things to make me feel better. Little did we know, we could actually see 3 shows from the room. We only found this out after we took a tour around the hall trying to look out every window. Luckily, my modesty was taken the night before by the nurses doing my skin check, so I wasn’t too worried about wearing those gowns that show your butt.
This is when I started telling everyone how lucky I was that I got to see double the fireworks because of my vision. I also now know that IV steroids make you feel terrible, give you magical dreams (seriously like weirdest ever) and taste like metal. At the time, I did not know that a lot of this was because of steroids, because they told me the steroids were there to help me. I had PT, OT, and speech. They gave me an eye patch, which I tried to be okay with. The PT told me we were the same age, which I, again, tried to be okay with. I was told countless more times how the treatments for MS are great, and that I would be fine. Except by the neurologist, who told me I would likely have “a new level of functioning.” Although, I am still not sure what that means. They told me after I leave the hospital it is very important that I see a neurologist ASAP so I can start treatment. Turns out, the waitlist for a neurologist was like 4-6 months most of the time, and that is if they are accepting new patients… which most were not.
Husband for the win again, because he called and called, used the hospital fax machine, and did everything in his power to get me in with someone as soon as possible. He got me on waitlists, cancel lists, all of the things he could do.
Clearly, there is not a good time for a chronic illness diagnosis, but two weeks before changing jobs is not something I would suggest… just for the record. That was another ball of stress. I had to call my boss and let him know that I was not going to be able to make it into work, ya know, being at the hospital and all. I ended up moving up my resignation day (still not sure if that was the best idea or not… but it’s done.) I called my new work and talked to the owner to let her know I still wanted to work there, and I have no idea what that means because I just started this new journey. She was very understanding and told me they would do everything in their power to take care of me, and not to worry. Easier said than done, but here we go.
