Things start to blur in my memory a little as we get to the actually hospitalization part. But I’ll tell you what I do remember. I know that when we arrived at the ER for the third time, my mom and stepdad went inside and got a wheelchair and then put me straight from the car into it. They wheeled me into the waiting room and told me however long the estimated wait was. The other night had been barely a wait at all, but since it was mid-afternoon on a Thursday, things were a bit busier this time. But this was NOT going to work for me. It was getting really really hard to sit up in a chair, I needed to lie down, so I pushed them to express the sense of urgency to the receptionist. She noted my state and then thankfully proceeded to skip me ahead; I was brought into a room in the back and helped into a bed. Wow, things were so much worse than two nights before. My last time in the ER I was at least able to assist in the transfers, but I had almost fully lost all of my strength. I still had a good bit of movement through muscles…I could wiggle my feet and kind of lift my knees when lying down, which perhaps is part of the reason for my misdiagnosis… but having the strength to resist the pull of gravity and bear the weight of my own body was another story.
Time passed and blah blah blah, and eventually they admitted me to the neurology floor. This hospital admittance was not surprising to me, but I thought it was clear that I needed some immediate attention which was not provided. For me, coming to the hospital this time was me admitting that I could not fix or diagnose whatever was wrong on my own; but I had a different understanding of how pressing my situation was…I guess because I had been the only one to truly and fully witness and experience how extremely quickly I had deteriorated day by day, hour by hour. But anyways, I didn’t get that immediate care but waited, as is protocol, until the doctor would make daily rounds the next day for my assessment. I waited, and wow, did that time pass slowly. I barely slept that night (I needed help to even be positioned for sleep; I don’t know if everyone is this way, but I apparently readjust a lot in my sleep which became apparent when I couldn’t readjust on my own, no longer having muscles that responded to these wishes). But THANKFULLY (I thought), the morning finally arrived, shifts changed, I got a new nurse, and the rest of the world was waking up. However, the hand on the clock seemed to pass just as slowly as the night, and we bugged the nurses often to ask when the doctor would see me. While we waited, my family and the nurse urged me to order food for breakfast and then lunch and after much nagging, I finally agreed to food. It was getting SO much harder to swallow though, and I had pretty much lost my whole appetite, energy and motivation to eat though my stomach was grumbling loudly. I also struggled to see or read the menu, or honestly even to hold it over my head with a steady-enough hand that allowed my eyes to squint and try to read. My mom read it to me and I ordered some potatoes and watermelon and other things to fill my stomach that would be easy to swallow. But the mashed potatoes were tough to push past my tongue and down my throat so I settled on some cubes of watermelon and called it a day.
THAT DANG DOCTOR:
Finally the doctor came in with her PA to assess me. Relief flooded me, though I’ll admit I was a little frustrated by this point …it had been almost an entire 24 hours in the hospital by the time I was getting care. In hindsight, I was also getting scared and upset because I was losing control of myself/the world as I knew it as the seconds ticked by. I had a lump in my throat, but I was ready for her to tell me what was wrong so that we could fix it.
For my initial assessment, she had everyone leave the room (my mom later told me she was unhappy about this request of the doctor, but it didn’t bother me). Then once it was just me, the PA, and her, she asked me to lift a muscle this way, move another muscle that way, asked a couple of questions, and then clearly came to a conclusion.
Actually, by the way she talked to me during the assessment, it seemed like she had already decided on a diagnosis before she even walked in the door. I’ll also mention that she had a surgical mask over her mouth this first time, and every interaction following. Maybe she had been sick, or maybe it was precautionary in case I was contagious; she never gave a reason for it. Not that she owed us one, but it did kind of rub me the wrong way. I know I’m letting my opinions influence my bias towards her, but it really gave me the same feeling as if I walked in an interview and my interviewer had sunglasses on the whole time, something that would be completely unacceptable for the interviewee to do. I’m generally pretty solid at judging character, and I typically give the benefit of the doubt until given a reason to think otherwise…but it just felt impersonal and judgmental, and her tone mixed with the mask honestly made me not trust her from the get-go. But let’s get back to the facts.
During my initial assessment, TWICE, she said some variation of “you’re just not trying hard enough.” Which if you know me AT literally ALL, you know that that description has not accurately described anything in my life, maybe ever; I work too hard on all things, most of which probably don’t matter at all in the scheme of life, and that’s my vice, not the former. Gosh, I almost cried right then and there; I had expected so much from this doctor and she definitely wasn’t giving me a sense of peace or being heard/feeling understood. She seemed in a hurry and didn’t really ask me for my experience, or at least didn’t listen to my response or my own take on what was happening to my own body. There were a few blatant errors in her interactions with me, this being one of them—I have friends in med school and I KNOW it’s stressed highly that they learn from the patient and hear what they have to say…this is where so much additional information or evidence can come from that may not show up quantitatively. Also, my full voice was long gone and it was getting harder to push words out in between deep breaths of air. My normal self would’ve demanded that she hear me out and would’ve used my voice to express my doubts and demand more answers, but my confused and scared self could not and did not use whatever voice I had left to command this doctor or demand different answers than the ones she was giving and putting in my mouth for me. When she felt confident in her assessing she had my mom come back in the room and reiterated the same things she had just told me, but the main thing that I remember was she again repeated to my mom that I wasn’t trying hard enough. UGH!!!!
A note on this for current or future doctors and nurses from a past patient—your job is stressful, YES. You don’t know everything, SO acceptable. But typically when you walk into a hospital room, your patient and family/friends are nervous, feeling out of control, and their worlds may be crumbling before them. You might not have the answers but letting them know that you hear them and are on their team makes all the difference. You have gained a certain power in earning the title Doctor, so gosh, please use it well. Gaining their trust and using those people-skills and bedside manner that you learned along the way is actually so important. …Probably part of the reason you chose the occupation that you’re in is to help people, and you might get to do that on a large scale by finding some cure, but for SURE you have the opportunity to do that every single day, even if it’s in the life of one person at a time. The human body and health is such a giant ocean that we have such a small understanding of, so may we remember that first and foremost we are all human beings, and may that remind us to approach others with humility.
I’ll also mention that I did have a general physician assigned to me while I was on the neurology and she was GREAT. She sensed our concern, did any and every test she or we could think of, even if she was 95% sure it wasn’t that thing she was testing for. Everything came back negative, which I guess was comforting as our more serious fears came back negative…things like MS, etc. An infection of the throat, we asked? She did a full culture swab of the back of my throat to test for any and every infection or virus. A tumor in my brain or on my spine? An MRI was ordered of my head and then my entire spine (honestly, this may have been ordered by the neurologist—I can’t remember for sure).
(These first MRI’s were definitely one of THE most miserable experiences if I had to pick a handful. I wasn’t really prepped at all, so being put into a tiny claustrophobic tube for 45 minutes when you can’t do so much as lift an arm or leg is slightly terrifying. I was literally doing breathing exercises to try and pass time without freaking out because I thought if I asked to come out for a breath then they would have to start the process all over again…honestly had no clue what an MRI actually entailed. And then to make it better, when I finally finished and was removed from the tube, the technician said the doctor had ordered an MRI of the spine, so back in I went without so much as unstrapping my head from the helmet. I was told to hold still, and that came easily, but I felt noticeably more paralyzed when I tried to again engage my muscles after the two MRI’s. I also was SO hot, which in hindsight it’s because I lost my ability to sweat, but at the moment all I knew was that I felt like I was going to explode in flames and I couldn’t even pull all the sheets and blankets off of myself while I waited for my bed to be rolled back upstairs to my room. All in all, great time!)
Every one of these tests, X-rays, etc. came back negative though, which was both relieving and nerve-racking because I was glad to not have whatever they had tested for but at the same time, there WAS something wrong, we just couldn’t figure out what. It was debilitating …literally, ha.
Let’s go back to the “you’re not trying hard enough” comment from the doctor:
I’m on anxiety medicine, which surprises some because I internalize my anxious feelings most of the time, and I also don’t fear a lot of things that most people do. But when I got to the hospital, I hadn’t taken my medicine in almost a week. Not for any particular reason, just first, I had been on vacation in New York and my daily routine had gotten messed up so I had accidentally missed a few days. Then I had started feeling funny and wanted my body to use any and all of its efforts to heal me, not to waste energy breaking down medicine in my liver …there were more important things to focus on. When the doctor found out about this though, she assumed negative intent and wouldn’t hear my actual reasoning. Then one of the days I had a video chat over a computer with a psychiatrist…they said it would help me or something, but I was just frustrated and it used a lot of energy to try and see her on the computer. Straining my voice was also not fun, and I didn’t feel helped me at all so I definitely did not feel like being a part of a forced therapy session. In hindsight, my mom told me that the session was probably to add data to the doctor’s assumed diagnosis –Conversion Disorder, which commonly stems from stress and anxiety. Conversion Disorder is basically a psychological disorder where the mind convinces the body that it has an ailment or weakness, usually as a way of coping and shutting down in time of extreme stress or trauma. I had a hard time believing this was a real disorder when the doctor explained it, but I wasn’t the doctor and had no other answer, so I tried to give it a chance. Upon my request, my mom extensively read to me about Conversion Disorder and the causes, symptoms, etc. I honestly thought it sounded like a load of crap, but I tried to give her and it the benefit of the doubt…I mean I DID have anxiety and stress in my life. BUT, I had just come back from a 10 day vacation—it’s not like I was in peak time at work and had been working 11 hour shifts for 6 days in a row..? (I had done that before). It just didn’t seem right to me, but I really didn’t have any reason why except for intuition. And I didn’t have any other explanation. My mom kept telling the doctor that this diagnosis just wasn’t characteristic of me in the way that she was describing it, but the doctor wouldn’t hear it or consider that her diagnosis could be incorrect.
To add to the Conversion Disorder signs, I also had my first ever anxiety attack one morning on the neurology floor, ugh. I wanted to argue this point, but I didn’t have the strength or energy to make my thoughts into words at this point. But man if I could’ve, I would’ve exploded with this:
ANYONE would have an anxiety attack if in the span of a week they had become paralyzed and the only people with the power to do anything weren’t even supporting them! And if they were right and it was Conversion Disorder, it was only getting worse so was I just paralyzing myself for life? When would it stop—would my mind eventually psyche my body out to death? Also, if you had to be placed on your side to fall asleep and woke up with your bottom leg and hip PAINFULLY asleep from bearing the weight of your entire body on top without the power to even flop over, let alone just move your top leg off of the other, you would also want immediate help.
What no one saw leading up to my anxiety attack:
I awoke needing to be placed back on my back, and fast, but no one was in the room with me. They had told me to just press the red emergency button if I needed anything, but I could barely feel or move my hands and my fingers didn’t have the strength or control to push the red button when I finally reached them up to it. Somehow, I finally pressed the button but when the nurse came through the intercom, my voice was too soft and she just kept saying “hello, hello??” It was like one of those nightmares where you try and scream but no one can hear you…except it was my real life and there was no waking up. She hung up. I worked my butt off and was able to throw enough weight against the red button again; this time when she said hello, I strained my voice as loud as I could and she heard me! I didn’t know what to tell her though—I said I needed to be readjusted and she said, okay, to be patient and someone would be there soon. I focused on my breathing to distract myself from the pain, practicing the techniques that the speech therapist had taught me the prior day. I watched the clock and told myself to make it just 5 more minutes and not to panic. But 5 minutes passed, then 7, then 8 and the door was still closed with me inside, unable to move. I started crying as a result of panic and pain, but crying didn’t help me get more oxygen. I fought to press the button again and by the time I did and they answered, I shouted back at them as best I could “I CAN’T BREATHE. I CAN’T BREATHE.”
Soon after they busted my door open and rushed inside, flipping me back onto my back and sitting the bed up so I wasn’t lying flat. I could tell these people thought I was just being over-dramatic, which made all of this 10x worse. I think they put a wet rag behind my neck and eventually I calmed down.
Finally, my mom got to my room, and everything was instantly better. I think that was the last time that she left me alone for more than 5 minutes at a time…and I honestly panicked every time she did. Her and stepdad Tim were fighting for me through all of this, the only ones actually trusting me and taking me seriously. Ugh, no wonder I’ve had multiple times since getting out of the hospital that I’ve panicked after being doubted…feeling unable to be heard will scar ya.
The tough thing about both GBS and Conversion Disorder is that neither have a specific test that will either confirm or deny the diagnoses. Both are diagnosed partially through process of elimination. I don’t deny that there were definitely symptoms and things in place that were in support of Conversion Disorder. However, the doctor was not open to the chance that she could be incorrect. My best friend’s mom had been a nurse for many years and was convinced that it was GBS, especially because GBS has a history of following mononucleosis –the only diagnosis that had actually been confirmed. But even though we asked multiple times, the neurologist would NOT order the spinal tap. A spinal tap wouldn’t exactly confirm or deny GBS, but having spinal fluid abnormally high in proteins is a VERY good indicator that the issue is autoimmune-related. But she said, and I quote, “The risk is just too high for a spinal tap. Even if you were my own sister, I would not order this test.” I understood what she was saying, and it made sense if she was 100% confident that she had the right answer for my weakness…but if Conversion Disorder was the correct diagnosis, I still didn’t feel like I was getting actual help in any sort of way…
First of all, I now understand that Conversion Disorder is not just a bogus cop-out. Multiple physical therapists have since drilled this into my head upon my venting about this neurologist, thankfully helping to set me back in my place. However, after doing extensive research, I also know that it is widely known by therapists (and I assume doctors), that if Conversion Disorder is the actual diagnosis and disorder then it is rarely, if ever, helpful in recovery to tell the patient of this diagnosis, and sometimes the actual diagnosis is also withheld from immediate family members as well. Not sure how the last part would work out, but I definitely understand not telling the patient that everything is all in their head. …I went through this thinking for 2 days, questioning if I really was just mentally psyching myself into this mess; I’m honestly lucky it was only two days or I very well might have worked myself into a psychological issue. Another detail, usually the symptoms of Conversion Disorder tend to mimic a certain other diagnosis (a common example being stroke), but all tests detect that nothing is wrong. Every single test had come out negative, so that part was definitely some strong support in favor of Conversion Disorder…that is everything besides the spinal tap—which wasn’t given!!!!! Anyways, affective Conversion Disorder therapy also typically mimics the patient’s perceived diagnosis (i.e. stroke). But even then, I did not feel like my physical, speech or occupational therapy in the hospital was stopping any digressions in my health. Everything was consistently just getting worse day by day and no different methods were being tried. I was watching my strength, balance, and control deteriorate and I had no power to do anything to stop it.
The three days that I spent on the neurology floor all blur together, but I basically faded fully over that time. I remember my mom calling every and any family friend that was a doctor or nurse, asking them if there was anything else that we could be doing or that we could test for. I was losing my ability to text, read, or talk on the phone, so I messaged my bosses that I’d likely be out for a bit, but my mom took it from there when I received a call back to check on me since I couldn’t speak.
One day I had a tiny little tech that tried to help me get on my bedside commode, but she couldn’t support my weight and didn’t expect me to be incapable of holding any of my weight on my own…I almost fell and from then on I wasn’t allowed to even try and get to the bedside commode to use the bathroom. Things were going great. I also still hadn’t showered since Clair’s attempted hair-washing on my hardwood floor, so my mom requested it one evening (sweet Mom!). A couple of techs transferred me into a shower chair and rolled me down the hall to a giant shower. The two of them and my mom washed me while I lost all sense of social norms and dignity, but I was clean so who cares!!! It was all I could do to bear the pain of sitting up in a chair; all my dead-weight was slumped over because my back had continued tightening and I could no longer sit up straight in a seated position. Everything hurt, but I was soon back in the bed, horizontal, which was the only position my body could be in without my nerves screaming mean words in pain.
The truth that I constantly held onto over these three days was “BE STILL AND KNOW.” I couldn’t remember where in the Bible it was (Psalm 46:10 -thx google), but the Lord placed these words in my mind and helped me to cling to them and repeat them over and over again in my head. Be still and know that I am God. “But God, I am literally going to die if I don’t get answers. And believe me, I’d take control and just figure it out myself if I could. But I can’t read or move or talk, sooo.” Be still and know that I am God. “Okay, you’re right you’re right. God is sovereign and if it’s his plan to keep me alive than no human can mess that up...we don’t have that much power. But what if I become fully paralyzed and can never walk again, let alone move or roll over?” Be still and know that I am God. “I can’t move so lol @ that, my only thing I have the power to do is to literally just be still.” And so this dialogue in my head kept going back and forth, but somehow, those words and clinging to the truth and power of my King, was enough to make it through a minute at a time.
Fast-forward to Sunday afternoon. I was getting changed and readjusted for what felt like the 400th time already that day. It was only day three and I had already become completely immune to people changing me. The first day, I insisted that my male nurse find a female every time, but by this point I couldn’t move so why the heck could I even care about all the different people wiping my butt for me. There’s a system: They roll you to one side, clean, flip you to the other side, clean and then lay you back on your back with fresh linens magically underneath you. So at this point, I was flipped on one side and both of the techs were standing at my lower body, not paying attention to what my head or face was doing.
It was getting harder to gasp for air with each breath, but this time something felt worse and different. I tried to breathe but no air came through. Ummmmm. I quickly brainstormed ways to get their attention, but I couldn’t move at all anymore. I couldn’t lift my head to look at them or lift my fingers or hand to alert them… and no sound would come out of my mouth—I also didn’t want to use up whatever air I had left in my body. So I tried not to panic (that hadn’t gone so well the last time) and waited for them to get done and flip me back onto my back. COULD THEY MOVE ANY SLOWER? They had no sense of urgency, I mean I guess why would they, but this was not going to bode well for me if it took much longer. …honestly this all probably happened in a matter of seconds but it felt like minutes were ticking by…it was like being under-water and not being able to come up for air. Then I looked straight ahead and thanks to placement by the sweet Lord Jesus himself, I realized my mom happened to be standing behind the tech, observing what was going on. Just about the same moment, we made eye contact and she noted the panic covering my expression. She also said later that my face had turned blue. She instantly started yelling at the techs that I wasn’t breathing and to “flip me over, flip me over. She can’t breathe!!” Words you never want to hear or experience, but they listened and rolled me back onto my back. Thankfully, this helped open my windpipe, and I immediately started breathing again.
But trouble breathing meant we were in emergency mode now, and the tech ran and got help. Other people probably came in, but the main person that I remember was the Pulmonologist –the lung doctor. He spoke to my mom and I as I gasped for air with every breath, and she filled in any answers that I could not choke out. He was in there and questioning us for a few minutes, maybe, and then the words came out of his mouth – “It’s GBS, get her to the ICU.” RELIEF flooded through my veins, surprising as that may be. I had known something was wrong, and the ICU meant they were going to do something to fix it. I was rejoicing in my head because I knew that my own strength was barely helping me hang on. I remember logistics being explained and then being in the elevator and wishing it to move faster. I remember them pushing my wheeled bed down the hall and wishing the same, and then I remember my bed being pushed into a room and plugged into some stuff. Lots of people entered the room and were looking at me, except my mom wasn’t one of them. Then everything went black.
A $30 donation to CaringBridge powers a site like Maggie's for one month. Help keep this site online for them and for you.