Journal

Journal entry by Maggie Wakefield

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.  

 

FALSE DIAGNOSIS:

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.

 

RESPIRATORY FAILURE:

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.

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Journal entry by Maggie Wakefield

     During the early hours of the night on Wednesday, May 23, I woke up and needed to use the bathroom badly. I tried to push myself up and out of the bed, but ended up rolling onto the floor. I hoped that I could use the bed to pull myself up, but quickly realized standing on my own was not going to happen. However, I did manage to get to a sitting position, though not the most comfortable one (…it’s VERY hard to move your dead weight when muscle groups aren’t working, even your own). I was also increasingly losing control of my bladder as the days went by. I tried to yell for my friend sleeping so close, just across the hall, but my voice was barely louder than a whisper at this point; my voice was getting weaker with everything else and couldn’t reach full volume. I couldn’t yell, I couldn’t use my muscles, and I started to panic. I somehow dragged my deadweight over to the door…luckily my room is pretty small so that was really just like three giant scoots. I used one arm to push the other arm above my head to reach for the doorknob. I struggled for a bit but I think I finally reached it and got the door open. I kept whisper-yelling my friend’s name and by the grace of God, she happened to wake up and open her door to walk out. I don’t know if she unconsciously heard her name in her sleep or if God actually woke her up--probably both.

        She looked down at me from the room across the hall, and there I was staring back up at her from my doorway, a mess but still kickin’. Also the grace of God, she’s studying to be an Occupational Therapist and had been learning how to safely stand people up or move weight when working with a whole nother human. So somehow she got me up from floor level, helped me fix the bathroom issue, and then laid me back down on the couch so I had slightly more control of movement the rest of the night. Pretty sure she also kept her door open after that, just in case I needed her again.

 

 

When morning hit, my friend left for class, but my suuuper kind-hearted roommate (shoutout Alex) worked from home because I pretty much needed 24/7 care at this point. I could move a little on my own but could no longer assist myself to the bathroom without serious assistance, so her presence was SO necessary and appreciated. She also picked up my ER prescriptions from the pharmacy, which allowed me to start taking those daily dosages--an antibiotic and a steroid for my throat (& hopefully for whatever else was going on). Alex did her work but brought me pudding, gatorade, and frosted wheats (they have 90% daily Iron!!!) as I requested. That’s pretty much all I could stomach at that point; I was losing my appetite and swallowing was getting harder. I also did finally hear back from the doctor regarding my bloodwork from that past Sunday--they again confirmed my mono and said I had very low Iron, so I was poppin’ those frosted wheats ALL DAY.

 

All throughout this, my mom was asking questions from hours away and getting increasingly concerned about my health and well-being. While I was down-playing things to avoid raising concern for her, my friend Elise was thankfully keeping my mom accurately updated on my health. My mom had been planning to make the 6 hour drive to Austin on Wednesday, but after it was confirmed as just mono, I told her not to come because I just needed to wait and sleep it out. ...Even though I did continue to internally question things, wondering if mono really was all that was wrong with me, thinking “people say mono’s bad...so I guess it just really must be this bad. ‘Oops’ to any friends with mono that I dismissed as being over-dramatic about their fatigue” (sorry though if you have actually had mono...fatigue is the worst, no matter the level). ALSO (and this is dumb, I know), my childhood best friend was headed to Baton Rouge but offering to pass through Austin for an overnight stay on her way home, and I wanted her to spend the night Wednesday!!! --I had been keeping her kind of updated on my health, so she was going to come take care of me before continuing her drive home! So my mom held off another day and Clair came to Austin Wednesday night.

 

 

My roommate left later that evening for a house-sitting gig, which meant I moved verrry little in the in between of Alex leaving and Clair arriving. I don’t remember a ton of details from that night, except that she attempted to help me wash my hair that I hadn’t successfully washed since that last Sunday morning, --and how this went was sad and miserable at the time but also pretty laughable and really just a true testament of Clair’s loving character:

We planned to get me to the kitchen sink to sit on a chair while she washed my hair in the sink. She set it all up, even testing out the height of the chair and adding pillows to the seat so it would be just the perfect height for me to sit and lay back without having to support my own weight...just like at the hair salon! I wasn’t sure how long I would last sitting up vs. lying down because I was getting exhausted pretty fast these days, so she got my shampoo, conditioner and towels all set up at the sink to make this happen as fast as possible. While Elise, though small and thin, had been trained as an OT to safely help me up, Clair, also small and thin, was not trained and was still recovering from an ACL surgery she’d had two months before. BUT she’s not a quitter so she eventually got me to sitting and then to standing from the couch, and I held on tight.

I could not support the weight in my legs anymore, but when they were locked I could kind of drag them along. So she put my arm over her shoulder and we started the trek to the next room. It was probably only 30-40 feet total, but we made it maybe 10 or 15 feet shuffling before things started to get real shaky. We were approaching the doorway to the living room and we both had to shift around a little as we prepared to fit two-wide through it. Things crumbled quickly though and as weight shifted my locked knees bent slightly resulting in them instantly buckling under the weight of my body...meaning Clair was suddenly supporting all 130lbs of my dead weight by herself. She tried her hardest but eventually had to give in to the inevitable, trying her best to soften my fall as I dropped hard on the wood floor. I mentally tallied this on to the number of falls from the past few days.

Clair tried to lift me from ground level, but it wasn’t going to happen. We both understood quickly that I was not going to make it all the way to the kitchen sink so Clair (and this is where she wins a TRUE FRIEND award), put some water in a couple of large bowls, grabbed a pillow, some towels and the shampoo and told me she was going to wash my hair right there. And so she did...or did the best she could. Washing my hair on the floor definitely wasn’t ideal, but she did her best to fully soak my hair in a bowl, rub some shampoo in it, and dunk it back in the bowl to rinse it out. Lifting my head ever so slightly was really all I could do to assist, but I was so thankful even just to feel the water soaking my hair. Try as she might, the water ended up alllll over the floor. As she finished, we worked to scooch my body slightly out of it so Clair could take to the floor with all the towels I owned. She soaked up the majority of the giant puddle, and I felt content about the wash job Clair had done; it was definitely better than nothing. Anyways, I hadn’t been able to look at myself in the mirror since 3 days earlier, and I had more important things worrying me.

But then came the actual challenge of getting me back to my place on the couch. I was still at least 8 feet away from it so we brainstormed, then trial and error’d different ways to move my body back. I was cracking jokes the whole time in attempt to lighten the situation, but we were both obviously panicked by the extremes of my physical weakness...it was honestly such a weird sensation because my brain cognitively felt no different, but my muscles just would not respond. ...But anyways, we eventually arrived at the idea that I roll onto a floor cushion so Clair could then pull the cushion (and me) back to the couch as I pushed my feet along with her. But when I tried to roll, I realized how very weak I had become. I couldn’t do it on my own and she literally had to take the reigns of rolling my body long-ways onto the cushion. It kind of worked, but my feet weren’t really able to help either. So after inching the cushion, rolling me back on and so forth, I eventually arrived at the base of the couch. The couch isn’t that high, but it was another struggle to get my butt to the height of the couch so that my body would stop flopping all the way back to the ground. BUT we were not raised quitters!!! Somehow she eventually got me back on the couch, and you better believe I didn’t dare get off of it again.

Clair later told me that she called her mom super concerned after this incident. She also told my mom to definitely drive up the next day. She needed to leave early in the morning to start her long drive back to Louisiana but made me make sure that I got someone to come take care of me during the day. By this point I didn’t object to making sure someone was there...I knew something was seriously wrong. Clair prayed for me and we went to sleep, hoping our prayers would be answered and I’d wake up feeling stronger and more myself.

 

Clair left early and an old roommate and her boyfriend came and took care of me the whole day while I waited for my mom and stepdad to arrive. I woke up feeling well-rested and perhaps a little stronger! But when they arrived, they instantly expressed their concern; apparently I was not looking myself at this point. I felt stronger, but my muscles were not reacting any better. They researched potential causes to my increasing weakness. I had definitely reached the point of full paralysis in certain muscle groups. I didn’t even have the strength to sit up on my own or really adjust my body at all. My voice was even raspier than normal and was getting softer by the day. But the scariest thing about it was neither I, nor anyone that came to help could do anything about it. It had all snowballed so fast and no one could decipher what was happening or the cause of any of it. I had probably gotten more rest in the past four days than I typically get in a whole two-week period and nothing had improved or gotten stronger. So by late morning on Thursday, May 24, I concluded that this was more than just mono or low Iron.

My mom gave me updates throughout their day, but I waited until they walked in my house around 3pm to tell them I needed to go back to the ER, and right then. As I instructed my mom and stepdad how to help me stand and then support me, they also realized how bad off I was. I needed my arms around both of their shoulders in order to be in a standing position at all. We struggled to shuffle through our very narrow halls three-wide, and I just barely could lift my feet to help drag them along. Man, this was all a lot harder than it had been even the night before with Clair. Stairs were the toughest because as soon as my knees needed to bend at all, my whole entire weight would just buckle. But we eventually got through my house, out the front door, down our front steps and eventually down the curb so I could flop into the car.  I had no idea that this would be the last time I stood or “walked” for more than a month. And I wouldn’t see this house or even venture outside of the hospital walls for close to two months. I did know I was going back to the ER and not leaving until they diagnosed me and gave me some medicine to fix me. Little did I know it would be a heck of a lot more complicated than that.

 

Journal entry by Maggie Wakefield

So this next part of the “leading up to the hospital” is coming way later than planned, but here it is!!!

To recap what happened in the first post: I started feeling noticeable symptoms late Wed, May 16th, I got bloodwork done on Sunday, May 20th, and got stitches for a busted chin on Monday night, May 21st. 



Now it’s Tuesday morning, May 22nd. Here are some events from the day at home by myself while roommates and friends went to work or classes:

 

I struggled a lot to push myself up from my bed without anything to hold onto so I stayed on the couch during the day…I could use the back of the couch to readjust myself and to push myself up to sitting/standing so I had a lot more control of the weight of my body.

 

It had been two days since I showered last, which seemed like a lifetime considering I’d just been sitting in and breathing my own air for the past two days. I decided a bath was in the cards for the day. I sat down in the bath because I didn’t trust myself to be able to stand on the slippery surface and keep my balance without holding on. I also hoped that laying in the hot water would help relax my tense and extremely tight muscles (my mid and lower back was extremely tight now in addition to the entire back of my legs —little did I know this tightness would continue for the next month and a half with no improvements). After sitting in the bath for a little while, I had a renewed urge to stand so that I could wash my hair. I tried to get myself up but after a couple of attempts, I quickly realized it would not be safe to keep trying to stand or do this on my own. Instead, I tried to wash my hair from down in the tub, but I couldn’t reach the shower head so that pretty much consisted of me trying to just roll around under the bath spout with little success. Also, I was losing range of motion in my arms so I struggled to reach my hands all the way up to my head. After getting a semi-decent washing, I was tired and ready to lie down on the couch again.
But as previously stated, I could barely push up from sitting on a couch-level surface anymore, so when I tried pushing all the way up from ground level, I was very unsuccessful. Hmm..too bad I hadn’t considered that factor before getting down into the tub. I spent the next 30 or so minutes shifting my body weight in different ways to try and get myself to sit on the edge of the bathtub where I could then use the handle on the wall to pull myself all the way up. I tried to no avail, so I eventually flung myself longways onto the side of the tub and over it. I was then on the floor of the bathroom, a less slippery surface, with more hand-holds around me to hopefully aid in me getting to standing. I struggled for a while longer, and I actually don’t know how I finally got up. I guess given the options of either standing up somehow or staying on the bathroom floor naked and in pain for six hours until my roommate came home, my determination eventually got me up with the help of the toilet seat, bathroom door, counter top and well-placed handicap handle on the wall. 

 

The walk to my bathroom was seeming longer and longer, and after my terrifying bath experience, I started to limit my walks across open floor without having any wall to hold onto. Because of all of this, I started using my roommate’s restroom in the back of the house which was closest to the couch, aka my new place of residency. It’s a much shorter walk, so I made it there successfully a couple of the times. However, one of the times, something happened when I was sitting down on the toilet—it’s like my muscles give out midway to the seat (sorry for the graphics). I think I hit the seat first, but regardless, I somewhat miscalculated and ultimately fell to the ground, hitting my head against the shower door on the way down. This left me with a knot on my head to add to the fun stitches. 

 

I waited all day for my bloodwork results to come back from my primary doctor’s office that I visited Sunday, but they didn’t come. While getting weaker, I still mentally and cognitively felt fine, meaning when I wasn’t moving it seemed like everything was normal and okay, which was confusing. Meanwhile, I did my research from my phone on the couch and texted different groups of friends to see if they had any ideas; I didn’t come out with much. So later Tuesday evening, after all the events of the day, I decided that I should to go to the ER again to try and figure out what was wrong. My mom helped locate a hospital and ER nearby that was actually on my insurance, so this is when I went to St. David’s for the first time (unaware that this would be the place that I would spend the next two or so months). I notified both my roommate and my friend that had taken me to the ER the previous night, and they both selflessly donated more of their time to me. 


 

It was late, like 10pm-ish by the time we headed to the ER. I needed serious help getting down the front steps of my house and stepping up into the vehicle, but we made it. My roommate met my friend and I at the hospital, and they helped walk me to a seat in the waiting room as I was dragging my feet with increasing difficulty. I don’t even think I remembered to bring my wallet, but somehow they figured it out for me and got me signed in. Luckily, the wait wasn’t too long, though longer than the previous night. They might've pushed me ahead though, seeing my state of being was compromised. When my name was called, both friends helped me stand, but I could tell the nurse taking me back was not initially grasping how weak I actually was. As I struggled to get through the door, they finally brought me a wheelchair, wheeled me to an ER room and bed and helped me onto it. 

 

I don’t really remember all the details of that night, only that it felt like it was taking forever. We ended up being there until past 1am, so it was taking forever, but a lot got accomplished while we were there. I got my blood drawn again and they discovered that I was extremely dehydrated (In hindsight, it was getting harder to swallow and eat, so I had struggled to drink liquids the past couple of days). They pumped me with two liters of water as the doctor looked for other flags—she was great and said she wasn’t going to discharge me until she had more answers for what was going on. She put my bloodwork on rush order, and we waited for the results to come back. During the waiting time, my friends humbly helped me pee in a cup and then I was feeling a little lightheaded so upon request, the cute male nurse brought me pudding and jello and surprised me with one of every flavor, of which together we consumed all of them. 

The doctor finally came in excited to have some sort of answer and told us that I had mono, the same guess as the doctor on Sunday. But this being the first time I had gotten actual doctoral confirmation, it felt so good to receive. Mono explained the extreme fatigue and even weakness, but I still knew subconsciously that it was more than that. However, the bloodwork had shown all else seemed relatively normal which nullified the need for all the supplements I had been taking, which had given no visible improvements anyway. I then explained my first symptom to her, the extremely swollen and painful tonsils, and asked if there could also be an intense infection spreading from there. But we had already done a strep test, and it wasn’t that. She told me I had two options —she could either order a spinal tap or write a prescription for a steroid and an antibiotic to help my swollen tonsils. A spinal tap seemed very intense to all of us, so she suggested that I give the new medicines “the good old college try” while I continued to rest and let the mono run its course. She said that if no improvements were made in the next couple of days, to seek further help. We decided that made more logical sense…honestly none of us actually thought I was bad enough off to get a spinal tap and we had been there for so long already… I also was just terrified to receive one of those. To think though…I could’ve had a spinal tap right then and there which would have been strong evidence that my condition was auto-immune.

But we didn’t and instead went home, my friend spending the night for the second time in a row. She helped me get into bed and then went to sleep in the adjoining room, and I hoped and prayed that the morning would bring renewed strength, balance and energy. 

And that was Tuesday, May 22nd.











Until next time,
Maggie Wakefield

Journal entry by Maggie Wakefield

Warning…long post. Not inspirational, just informative. In case you’re wondering what led up to me being in the hospital and eventually the ICU.

 

 

So how’d it initially go down for me? Part I

I had just gotten back from a 10-day study trip in Turkey and Greece. I had a day of “adjustment” before returning to work for two long night shifts. Friends reminded me retrospectively that I was not feeling super well and I reported feeling very tired at work. That made sense though because I had just tried to have a night of sleep on my 12-hour flight back into the country and then bounced back into a busy and demanding life. After my second night shift, I drove straight to the airport for a full day of travel to get to NY for my sister’s graduation the following day. All of this sounds pretty crazy, and it is, but if you know me you know that this is very in character for me and is pretty much a depiction of how I had lived my entire life up until this point; I never want to be a quitter and instead charge the opposite direction by pushing through and fighting fatigue to make sure everything happens and gets done well. Anyways, I was definitely exhausted by the time I got to NY, but it made sense that I was tired. I just made sure to get good sleep that night and the following.

The night following her graduation my throat hurt the worst it had all year, but I had dealt with swollen tonsils off and on ever since starting night shifts so I didn’t think much of it. However, the first symptom that seriously caught my attention woke me up from my sleep that night; I woke up in the early hours of Thursday, May 17th with my hands and feet feeling asleep and tingly. I knew this was weird because there’s no possible way that I was simultaneously laying on top of all of my limbs for them all to be asleep. I walked laps around the apartment to get my blood flowing, chugged some water, and even ate a snack. I went back to sleep when nothing changed hoping that rest would help reset my body. Unfortunately, I woke up with no change to the tingly and numb sensation. That day I walked the Brooklyn Bridge and sucked it up. I drank some coffee and lots of water but to no avail. The next day I took it very slow and slept a lot, staying close to my sister’s home. The day following that, Saturday May 19th, I was to fly home, after which I planned to go to the doctor and figure this thing out.

But I woke up that day and my lips and tongue also felt tingly and numb (yes, a very strange feeling). That’s when my mom and I started doing research on possible causes of extremity sensational issues. Apparently lots of vitamin and mineral deficiencies can result in that “numb” symptom. So upon our findings, I walked from my sister’s graduation brunch to the nearest CVS and bought a few supplemental vitamins and a small thing of milk for Calcium. I paid for my items and pulled aside right there to open my purchases. I proceeded to take each vitamin using the milk I had just bought. I finished off the milk and headed back to the brunch with renewed determination, but I did not fail to notice that I was still feeling tired and was definitely cloudier than the previous day. The flight home felt long, and when the Uber dropped me at my home, I struggled a little to get my suitcase up the curb, noticing my balance was for sure compromised. I was supposed to drive to Dallas the next day for one of my best friend’s engagements, but I texted a couple people letting them know that I wouldn’t be there unless I woke up miraculously feeling a lot clearer the next day. I didn’t trust myself to drive that far with the way I was feeling.

The next morning, I didn’t feel any better or more alert/balanced. I took what would be my last personal shower for the month and drove myself to the doctor’s walk-in Sunday clinic. I was struggling and something was wrong. I knew that, but I’m not great at letting others know I’m weak, and I didn’t want to panic anyone unnecessarily. So I sat there with blurred vision waiting for my turn. They bumped me ahead of others to see the doctor, probably noticing my distress, and he said he thought it was mono, sent me up for blood work confirmation and sent me on my way. I waited for the results, which prevented me from seeking further help sooner; I was raised to be a frugal woman for goodness sake!! But I was quickly getting worse and had heard nothing. I slept more in a two-three day period than I ever had.

I reluctantly asked friends to bring me some meals because I no longer trusted myself to drive. I even used Amazon Now for the first time to buy some groceries and medicine. I waited all that Monday to get a call with my blood results but received no information. It was getting progressively harder to stand and stay balanced. I had to push up from the couch/bed with my hands to get to a standing position and began needing the wall to ensure balance while walking anywhere. Getting through my tiny house from bedroom to living room to bathroom to front door was getting noticeably more challenging.

That Monday night I was talking to a high school friend on the phone when I all of a sudden needed to use the restroom. I tried to rise quickly from the couch, forgetting my weakened strength. Since I failed to push off with my arms, my legs and glutes couldn’t bear all the weight necessary to rise (never realized how much strength everything takes), and I instead fell face first on the imitation-wood floor. I got myself back on the couch, but I had busted my chin open and was bleeding. We FaceTimed so that she could help evaluate if I needed stitches or not (true friend!). I however, closed my eyes when I showed her on my phone camera because I don’t deal well with medical things. Little did I know this would be the least of my medical worries. She encouraged me to call a close friend in Austin to see it in person and make the official ER call. I was fighting the ER thing (I had never been before), but when my friend got to my house she convinced me it was best to go even if they just put a little medical glue on it. I called my mom and she agreed.

I think this evening was when that long-time friend realized I was not okay. I needed her help to get down the front stairs of my house with one arm over her shoulders for each step. She drove us to the nearest ER Clinic and it was luckily very empty. I received attention right away, and they even took me to the back in a wheelchair. We kind of laughed at that because it seemed excessive, and I felt high-maintenance.

I tried to fight for medical glue, but the doctor assured me stitches was the best option considering the cut was pretty deep, and stitches would help the eventual scar heal better. I asked for anesthesia, but he laughed and said they would just numb it and I’d be fine. I closed my eyes really tight, held my friend’s hand, and pretty much blacked out until it was over.

After, I asked if they could assess my numb and tingly extremities as well, but they warned me that it would be charged as a separate acute incident if so. It had turned out that the nearest ER was not in-network for my insurance ($$$), so I decided against the additional assessment. I left the ER late that evening with three stitches, such a medical warrior!!!! Ha ha because I thought that was a lot to get through… My friend spent the night that night, just in case anything else happened. And that marked the end of Monday, May 21, 2018 and the first of my three trips to the ER.




More of the story to come …


Peace and love,
Maggie Wakefield

Journal entry by Maggie Wakefield

A time of thanksgiving….& perspective
We are just about at 6 months since GBS started so here’s my 6month update:

 

My hands are still shaky and my tingly hands and feet kept me up most of the night last night. It still feels like they are asleep and won’t wake up and that the little nerves are jumping around uncontrollably. BUT a friend pointed out the other day that they shake less than they used to.

Stairs are still hard and I’m suuuper slow if I don’t have a handrail, BUT my muscles are working!!

Last bio-feedback update said I only had about 30% neuromuscular response back in my calves and glutes so far, buuuut I can now push off the ground and jump ever so slightly, and that makes me feel alive. I’ve even been doing small intervals of jogging on the treadmill in therapy!! My slow pace does not represent my Cross Country days well, but I’m working on getting there. My childhood bestfriend and I are even setting a lofty goal of jogging a 5k early in the next year…so HERE WE GO.

My mouth is currently super numb because I just got my cavities filled. I finally went to the dentist last week and was told I have 5 cavities- 1 super big one and 4 little ones. I’m blaming those on GBS and the fact that I couldn’t brush my teeth for over 3 weeks, especially when I had a tube down my throat (also maybe bad dental genetics). But anyways, today I got those filled. My jaw still hurts to open and my mouth started shaking a third of the way through the dentist visit because those muscles still aren’t strong enough to be engaged for so long. BUT the receptionist personally took it on her to make sure I got in for this appointment and now my teeth issues are resolved for now!

Today I got tightness and anxiety all over while the dentist was putting in my fillings, and he had to remind me to breathe. I was hoping visits to the doctor would feel so minor now, but I definitely am going to have to process through some anxiety with every doctor visit and procedure in the near future. However, I’ve always been terrified of health-related issues because those are unpredictable and out of my/our control. But, I don’t think I’m so afraid of those issues anymore. Whatever comes, it is temporary and the promises of the Lord are unchanging, always. The pain will pass, the agony will soon feel distant, and we will get through it. And even if things don’t go as we want, wow, we are not meant to be here on this imperfect planet forever... Thank God we get to have hope beyond this life.

Another thankful thought— I’ve been told that I responded so much faster and better to treatment than most other people, which I KNOW that I have prayers of so many, the presence of my mom/friends/family, and probably my age and prior health to thank for that. It’s crazy to think back to not being able to move parts of my body –feeling trapped in a body full of nonresponsive muscles that makes it foreign and heavy.

…I went to a small concert the other night for Birdtalkers and the only song I knew prior was “Heavy,” which has been on repeat on my Spotify playlist. The head singer questions Do your fingers move/Do your lungs inflate and SHOOT that gets me in the feels every time because he’s right, they didn’t, but they do again, and that’s enough to be overwhelmingly thankful for!!!

 

I’m still improving and moving forward and that’s more than enough to be thankful for. Taking some deep breaths now to remember that.

 

 

<3 Maggie Wakefield

Journal entry by Joyce Fields

Some of you have been asking for me to give an update on how Maggie has been progressing physically. She has been wheelchair-free for the last few weeks! And she no longer needs her crutches or walking sticks either! However, having a chair nearby is incredibly helpful since she does still fatigue and needs to respect her body's need for rest. Maggie's walking form looks great. In physical therapy she has been practicing hopping and even jogging! Maggie says that the first time she tries new physical activities, she may not be able to do it but then if she tries a few days later her body responds. When she is again jogging four or five miles, I'll know she's back. Please do continue to pray for Maggie's continued recovery and strengthening: her fatigue factor is still very real; she needs at least 10 hours of sleep and needs to be careful not to over-fatigue her body. And I think these past five months have certainly impacted her and taken a bit of a toll.

If you are reading this, THANK YOU for hanging with Maggie through this time -- it means so much to us!!

Journal entry by Maggie Wakefield


Taking a quick moment to share one of my greatest learnings/reminders as a result all of this GBS stuff & how it relates to, well, everyone:

I’ve mentioned this time and time again, but feeling the weight of encouragement, prayers, support, and ultimately love of so many surrounding me really made all the difference during what could and may be one of the hardest things I’ve had to go through in my lifetime. I was stuck inside my head during the entirety of time that I was fully paralyzed, and we all know the mind can be a dangerous place to be. However, hearing constant encouragements and truth being read to me stopped me from getting lost in the dark and lonely places of my mind. Honestly, I was SO blessed that so many friends were made aware of my life-threatening illness because of the resulting kind words and selfless actions. Also, side note, people are 50% warmer when you are in a wheelchair…if only that could be how we interacted with each other always…

Anyways, from my experience, being loved by others is an incomparable feeling and can really keep a person grounded.

However, the majority of the darkest and hardest times in our lives are when we feel alone or helpless… often times when others are unaware of what we are going through. Physical ailments tend to be obvious, but the majority of “ailments” are unseen. And actually, each of us will always fall into one of two categories—either battling through whatever this tough life has thrown at us, or directly interacting with those that are. And being honest with ourselves, we typically fall under both in some capacity. So not only does this have to do with us personally, but it has to do with all of those around us. We hear this all the time, but you seriously never know what each random person that you come in contact with might be going through.

 

So for the culmination of my two points: we are all struggling brokenness in some capacity, but might we band together to positively impact each other and lift one another up.

Take it from me, your small positive impact really can and does make ALL the difference in the lives of those around you. For some reason, we each have this crazy power to impact each other. So be uplifted, remembering this power and acting with this knowledge, carrying our influence well. Our minds are powerful, but the good of people is even more powerful… DANG—that we were charged with such an ability to impact those around us!!!

May we remember this and accept the challenge to wake each day desiring to impact the world and its people positively vs negatively, every time. May we offer that love to others in hopes that maybe we will receive that love back when we need it most, but continuing in love even if we don’t.

May we try to understand those around us, recognize that we can’t ever fully understand another, and choose LOVE each day no matter how different (or even blessed) someone seems compared to us. 





-Maggie Wakefield

"13 And now these three remain: faith, hope and love. But the greatest of these is love." 
1 Corinthians 13:13 (but really the whole chapter rocks)

Journal entry by Maggie Wakefield

Hi everyone!

So I guess it's the patient's turn to takeover the site and use it as a source of sharing and communication (That's a good sign)! We are right at the 4 month mark since GBS took over my life, and even though it'll be a while until (/if) I regain 100% control, strength and endurance, things are NIGHT and DAY different for me...which is a testament to you and the Lord! This is after about 3.5 months of recovering from just 1.5 weeks of damage. 

First of all, I hope this seems over-communicated, but I just want to reiterate how your overwhelming support has carried me through this. Waking up in the ICU a couple days after being intubated from respiratory failure, those by my side read your words and showed me your videos. Even though I couldn't read the screen or hold a phone, I was immediately greeted with words of prayers and encouragement over different social media and communication means. Thanks to those that shared my story, gave financially, sent videos of themselves speaking directly to me and covered me with thoughts and prayers. I kid you not when I say I felt the power of your prayers. 

And then lastly, Guillian-Barre/full body paralysis is in fact a CRAZY thing to experience and live through/recover from--I'm no journalist, but I would like to communicate my learnings, thoughts and experiences as much as I am able.  I'm also trying to process through it all, especially because in the heat of everything in the ICU, I was cognitively fine but was unable to communicate...not ideal for a verbal processor! Something like this can cause quite the paradigm shift, but I would rather you learn from my experiences without having to go through the trauma of GBS. I'll be using this forum over the next while as a way to document, so please subscribe to emails (or unsubscribe) as you desire. Also, please let me know if there are specific things that you are curious to know. I look forward to processing "aloud" for you to read.



-Maggie Wakefield

Journal entry by Joyce Fields

What a joy to have Sara and Maggie make the drive from Austin to Baton Rouge over Labor Day weekend! This was the first time for either to be home since GBS hit (and over a year for Maggie to be home since she moved to Austin last August). Maggie's walking form and strength continue to improve; her walking looks great! She brought her wheelchair home but did not need it during the weekend. She keeps at least one forearm crutch nearby. She reported that her glute muscles are finally beginning to strengthen. She still does not have the strength and physical endurance to walk far but she continues on the path to full recovery. Sara will stay with her in Austin until next week. Maggie continues her rehab regimen both in her therapy sessions and with her at-home exercises. Again, we appreciate your expressions of encouragement and your prayers. Thank you!

I thank my God every time I remember you. Philippians 1:3

Journal entry by Joyce Fields

Life has been busy for Maggie (and me), so for those of you have stayed connected with Maggie's story over the past three (!) months, let me try to summarize the past ten days since my last post.

Maggie has had quite a few days of independently driving herself to and from her rehab therapy 3 days/week, thankfully successfully. She continues to work diligently in her therapy with continued focus on strength and endurance. She also works on this when not in therapy, wheeling herself and practicing her walking on her neighborhood sidewalks.

Her sister Sara flew in last weekend for a wedding and was able to spend a few extra days with Maggie. Because Maggie can now stand and walk for short amounts of time, that means she can join her friends on the dance floor too. I've added two photos in the photo gallery, one that Sara took of Maggie walking with her forearm crutches. She looks great! But she still fatigues quickly; she says she requires at least ten hours of sleep. Sara's visit was such a help to Maggie; besides her sweet company, she accompanied Maggie and helped with errands and they cooked together. Sara will be flying back this next week to spend a couple of weeks with Maggie, which I love.

Maggie's drive to stay connected with the world of people keeps her motivated to not settle for staying in her house. When Maggie was still in the rehab hospital in July, she told me that she wanted to fly to her friend's bachelorette weekend in August. I suggested she needed to check with her medical team before securing her airline ticket. Her doctor said "Sure!" That weekend is right now. One of the other bridesmaids also lives in Austin, so the two made sure to buy their tickets together and her friend has been key in helping Maggie's travel from house to airplane(s) go smoothly (although she had a minor fall with her wheelchair. So many friends, roommates and loving sister to thank for helping encourage Maggie in so many ways!

Delight yourself in the Lord and He will give you the desires of your heart. Commit your way to the Lord; trust in Him and He will do this: He will make your righteousness shine like the dawn and the justice of your cause like the noonday sun. Be still before the Lord and wait patiently for Him..
Psalm 37:3-7a

Journal entry by Joyce Fields

Maggie had her second of five plasmapheresis treatments this morning. In lay terms, this treatment washes her blood of the anti-bodies that have been attacking her nerves. This afternoon we celebrated the moments when she was able to touch each of her four fingers to her thumb on her right hand! This may not sound like a big deal, but her decline in mobility over the past week has resulted in her having very little remaining control of her limbs, hands, feet and torso. Thankfully she has retained control of her eyes and is able to move her head in a nod; she uses her head nods and eyes to communicate with us. We have an app on our Ipad with the alphabet. When Maggie has a need that we don't understand, she nods to indicate which letter in the row in order to spell out the words. Maggie's baby steps of progress today includes the ability to summon us to her side by tapping on the bed with her fingers. She also began to twist her forearm to practice her princess wave. And she is beginning to feel sensation in her legs; this had been lost as well. Watching Maggie lose her mobility over the past week while as we sought to understand the cause has been very scary and frustrating for all of us. But to now have a diagnosis and a course of treatment that appears to be working for Maggie is incredibly encouraging. To watch her regain these small beginning steps of mobility is incredibly hope-giving! We saw the light come back into her eyes for the first time since we brought her to the hospital last Thursday. Thank you for your prayers!!

More About Guillain-Barre'
Maggie’s Story

Site created on May 29, 2018

Update—

Please note the links at the bottom of this post. A lot of progress has been made since Maggie’s experience of paralysis and respiratory failure which led to her intubation and ultimately diagnosis of Guillain-Barre Syndrome on May 27, 2018. We are thankful for continual support, but please also take a moment to educate yourself on Guillain-Barre Syndrome (GBS), it’s symptoms and effects. 



Maggie was diagnosed with mononucleosis on Tuesday, May 22, 2018 after having a sore throat and feeling numbness and tingling in her hands and feet for the past week. On Sunday, May 27, she was also diagnosed with Guillain-Barré Syndrome, a neurological disorder associated with viral infections in which the immune system attacks the nervous system. She is currently being treated for GBS in Austin, Texas, and we are hopeful that our vibrant, loving, and hilarious Maggie will make a full recovery! 

We are using this CaringBridge site to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting!


More about GBS :

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Guillain-Barre-Syndrome-Fact-Sheet

https://www.mayoclinic.org/diseases-conditions/guillain-barre-syndrome/symptoms-causes/syc-20362793

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