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Content Warning: Blog posts cover weight, eating habits, and medical experiences which may be triggering for some readers.
*All medical teams and hospital names have been excluded from all stories for privacy reasons. *
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Wheelchairs & Physical Therapy
After the short inpatient stay from the line infection scare, things at home began falling into a routine.
My roommate’s family had arrived in town the day I was released from the hospital and were staying with us in the apartment as well. They had brought their dog, so it was nice to have some serotonin from having a dog around.
When I arrived home from the hospital, the wheelchair that the occupational nurse had ordered finally arrived. We were so happy to get it because it was so much smaller and fit much better in the house to move around (since my dad couldn’t fit the normal sized wheelchair through the tight corners of my apartment).
On September 12th, I had been wanting to eat something else that had some semblance of a flavor (since broth was becoming a bit bland) so I tried a small piece of plain deli turkey. The whole rest of the day I was flaring, so my body won and I remained on broth for the remainder of the weeks.
September 13th, we took the new wheelchair out for the first time to an appointment with my primary care physician where we discussed the potential of trying a small dose of Mestinon for the POTS symptoms. Also, from taking so many medications for so long, my tongue had developed oral thrush (again). I was prescribed antibiotics for this as well.
I spent some time over the coming days doing an arts and craft project in my bed (it took forever which frustrated me because I kept having to stop because of nausea). I made a daily activity chart that was dry erase and had Velcro symptom cards so my dad could look over and see how I was doing without having to ask me (if I was too fatigued to talk).
It was also around this time that I missed my period because of how malnourished I had been. The TPN was working, it just had a long way to go before my body was nourished again.
I had gotten better with showers over time but was always too fatigued to dry my own hair. My roommate and my dad would help dry it for me.
On September 19th, we had planned to go to the public gardens for a little bit so I could be outside. This was the first time I had been out for something other than an appointment since June.
It was really pleasant, but we had to cut it short and find the nearest building with a public restroom since I was always having a full bladder from my TPN (which at this point had a 1500mL volume).
That evening I had a flare and continued on with my usual symptoms.
I had started having more consistent migraines whenever I disconnected from my TPN but was still waiting to get a glucose monitor to determine if my blood sugar was dropping when I wasn’t connected.
On September 20th, I seemed to have caught a common cold on top of already being sick. It was very annoying and sucked.
In physical therapy we were making a lot of progress- we got me out of my wheelchair and did a lot of walking exercises. Each visit we’d count how many steps I’d be able to make and time how long I could stand for.
During my appointments I had a blue safety strap on me the whole time that my physical therapist held in case I fell over. Luckily, I never fell!
By September 22nd I had walked 43 steps and could stand for 1 minute.
Since my fatigue was still very present, my doctors were researching further into potential causes. It was then that I received a phone call from them saying that they didn’t realize iron labs weren’t being ordered for me. They informed me that TPN doesn’t have iron in it since iron doesn’t mix with the ingredients. I was told I also couldn’t take supplements because it needs vitamin C in the GI tract to be able to bind with it. Since I wasn’t eating anything, it wouldn’t have worked.
From all the help from physical therapy (aside from my fatigue and symptoms), I was able to move around more on my own without the wheelchair in my house. I began learning from my dad how to change my own TPN in order to be more independent.
By the end of September, I had decided to make a social media post discussing all the health issues I had been going through. It was a very nerve-wracking thing to post, and I had many emotional ups and downs through the weeks.
My blood pressure was constantly a bit weird, and my circulation was poor. After leg exercises some days, my legs were pale white and cold and some days they were purple and swollen.
On September 25th, I was in bed holding my phone when my fingers started shaking. I knew this feeling all too well…
I began having the same upper body twitching as when I was an inpatient. We caught the whole thing on video to show my doctors in the future. I took my muscle relaxer and after an hour it ended.
I also finally received my glucose monitor. When I was on TPN my sugars were in the 100s-110s. When I disconnected my sugars dropped to 77. This is why I was so symptomatic when I wasn’t connected.
On September 27th, I received the news that I was iron deficient. We were informed we’d receive a call at some point to schedule an iron infusion. I also finally received information that my Gastric Emptying Study had finally been scheduled for October 8th.
To fill the time in the limbo I began doing 2 new things: I did sticker by number books (since coloring books were still too fatiguing for me) and I began compiling and creating a medical history binder.
The binder was massive and had every important document in it from the whole history- foot and stomach. I neatly organized it in chronological order with colorful labeled tabs and sections, so documents were easy to find.
September 29th, I had another muscle tremor/twitching attack and also caught it on video. I was informed by my nutritionist that my symptoms could be related to having a disconnect time for my TPN.
I was sent a new pump and switched to a 24-hour infusion time. My TPN volume was increased 200mL (which was the equivalent of a 8oz glass of water) since I was a little dehydrated.
Since I couldn’t disconnect from the TPN and my line couldn’t get wet, I got a bedside shower from Amazon. My roommate taught my dad how to wash my hair (since he is bald) and they’d wash it for me. It was also much easier for me since I wasn’t as fatigued having to do it myself.
I had 2 more large flares the same week.
The new normal in the new limbo was becoming more routine and we tried to make the days as comfortable as possible.
Read how Emma’s days continue in the story, “Tubie Clips & Wheelchair Gear – Prepped to Face the World.”
The Line Infection Scare
I had woken up at around noon on September 9th, 2021 and was feeling pretty fatigued. Since I was feeling weirder than usual, I recorded my blood pressure just to see if it’d change over time. 3:16 p.m. 103/74.
As per my usual daily routines, I’d spend the day in bed. I began feeling more lightheaded after returning to my bed from the restroom. I checked my blood pressure (in the same position as the previous time; sitting up), and it had dropped- 4:29 p.m. 93/65.
I tried to ignore it and continued resting in bed. When my dad had finished his zoom meetings, we had our usual conversations discussing the different jobs in technical theatre.
As I talked with my dad, I slowly began forgetting what we were talking about mid-sentence and my dad would have to explain to me each time I forgot.
It was around 5 p.m. and I had gotten to a point where I couldn’t focus or remember what I was talking about or what I was doing.
We checked my blood pressure again- 89/56.
As someone with a heart rate this whole time being in the high 90s and low 100s, this blood pressure was quite abnormal for me and was making me highly symptomatic.
Since the “brain fog” was getting worse and the fatigue was making it difficult to move, I called my medical team to determine what to do.
They informed us that I needed to go to the emergency department since I could have a line infection.
So yet again for the third time that summer, my dad called 911.
The ED was busy, so we were in a semiprivate room (the same room I had been in before when I had gone when I had chest pain a week prior) and there were lots of doctors and nurses rushing in and out. The room was separated by a curtain that had a patient with their family on the other side. Also, since it was semi private, it had no doors, only a large curtain.
I had a couple of training nurses come in to take blood for blood cultures to test for possible line infections. They informed me the culture couldn’t be taken from my central line lumen and had to be done from my arm.
This is when so much began happening all at once.
As they inserted the needle to draw blood, the case doctor came in to ask me about my symptoms. As I continued to answer, another nurse entered the room and did one of those deep nose COVID test swabs. I had never gotten one before but luckily it wasn’t bad since I had so many distractions going on at once.
The blood nurses were almost finished when one of them turned away holding the blood tube and accidentally pulled out the IV they were using to draw blood. I tapped them on the shoulder and said they had pulled it out.
Then the funniest thing happened- blood started squirting everywhere.
It was so funny to me because it just looked like something you’d see in the movies- it looked so fake. It wasn’t a lot of blood, but it gets everywhere. The doctor and the nurses were frantically trying to take out the rest of the IV to stop the bleeding. Then they tried their best to clean the blood off the sheets, floor, my gown, etc.
After everyone left the room, things were much calmer.
As hours continued to pass, my blood pressure got to more normal levels and I was no longer symptomatic. My dad and I were both expecting that I would be discharged soon.
Since we were waiting for many hours, I needed to use the restroom to pee after all the liquids I had between my TPN (which had been stopped when I arrived) and the IV fluids they started when I got there. I couldn’t stand for even 30 seconds so we knew I wouldn’t be able to make it to the bathroom. So, I was given the only option I could do at the time (because I refused a bedpan) which was a commode.
So, there I was in the most awkward situation- my dad in the hallway “guarding the curtain” for me while I was trying to use the restroom in a bedside commode with a thin curtain separating me and the patient next to me. Two things caught my attention at that time that I had not thought about: 1) I was not given toilet paper and had to reach for paper towels, 2) curtains aren’t soundproof.
Needless to say, this scenario made it difficult to pee.
After all the restroom business was over with, my dad and I were nonchalantly informed by the case doctor that I would need to be transferred as an inpatient while we awaited my blood cultures.
My dad and I were both shocked since we had no idea that I needed to be admitted and thought it was ironic how easy this time was to be admitted vs. in August when I had almost died…
Anyways, we were told that the blood cultures could take 1-2 days to hear back from so they were going to transfer me to the GI ward.
Since it was so late in the evening, my dad went home while I waited to be transferred to the inpatient room.
It was then that I was informed that this time I would be admitted to the pediatric GI inpatient ward. I arrived at my room at around midnight that night.
Everything about the pediatric ward was very uplifting and comfortable- definitely a change from the adult ward.
And just to add the cherry on top of being “welcomed back” to the GI department, I got a heparin shot to the stomach. Aghhhh, I hate those.
I met my night nurses and CCTs and was told I needed to be disconnected from my TPN (in case there was a line infection). However, I was told I wouldn’t get any nutrition until we determined if it was an infection or not (which made me symptomatic).
The next day, the routine felt all too familiar; woke up, doctors came in for rounds (I had some of the same doctors as when I was an inpatient the first time), medications, and another heparin shot the stomach. My dad would arrive for visiting hours starting at 10 a.m.
At around 1 p.m. we were told that I could be given TPN later because my cultures came back and I did not have a line infection. When my nurse was flushing my lines they were both clogged. It was because we didn’t have flushes with us when we were in the ED. I was then given the best advice from my nurse that I still use today- “you have to advocate for yourself when it comes to your central line. Central lines are common in the ICU but not really anywhere else. Chances are everyone in the ED isn’t going to know how to handle it so don’t be afraid to speak up and handle the lines yourself, so they don’t mess it up and get them clogged.”
About an hour later my dad and I were seen by the same doctor who gave us a hard time about the wheelchair during the last discharge. They came to the room to say that they weren’t sure why I was at the hospital and that I seemed fine so I should be discharged. My dad and I got annoyed since it wasn’t our decision to be admitted and didn’t know that I was going to be. Since we were getting a large feeling that we weren’t welcome anymore, we asked to be discharged- and yes, WITH a wheelchair this time.
Before being discharged we also asked for another referral to get the gastric emptying study since we had called numerous days in a row and 2 weeks had passed since it was supposed to be done.
I was discharged at 4 p.m. later that day and couldn’t wait to be reconnected to my new bag of TPN and actually get nutrition (after being off of it since the previous day).
I was now home, back in my bed and ready to stay out of the hospital.
Read what happens next in, “Wheelchairs & Physical Therapy.”
Is This the Routine?
I had been told by my nurse early on to invest in a PICC sleeve since I was likely going to be on TPN for a long time. I had ordered only 2 pairs from a company called MightyWell which really helped with all of the itchiness I was having from the sleeves the hospital would send.
On August 30th, I had my first appointment with my home physical therapist. It was a pretty slow movement day because that morning I had vomited 3 times and wasn’t feeling great.
That day I also had my dressing change and watching the change in the mirror worked! Since I could see what was happening, I was no longer nauseous and getting vasovagal syncope.
My roommate headed off to school on their first day of sophomore semester. My dad and I threw a little celebration to brighten the day. It was tough to see all of my peers jump back into school while I was stuck in bed unable to even do a coloring book without throwing up.
As the days followed, I continued to have flares, esophagus pain, vomiting and crying.
On September 2nd, I had a neurologist appointment to get a referral to be tested for Postural Orthostatic Tachycardia Syndrome (POTS). I was sent to be tested for this since during my inpatient stay, even with adequate fluid repletion, my heart rate was consistently tachycardic and would get worse with any sort of movement. Sometimes when I would stand my blood pressure would drop as my heart rate would rise, which gave me lightheadedness.
My dad wheeled me to my appointment, and we explained to my neurologist why we were there. They said they didn’t think anything was wrong with my heart and that there wasn’t a reason to test for POTS. It took convincing but we finally got them to check my orthostatics. When they did, they immediately said I should be tested for POTS and referred to a specialist. The only specialist in the Northeast had a very long waiting list so we got an appointment with their fellow for November.
On September 3rd I had my last home physical therapy appointment since I wanted to transition back to the physical therapist, I already had for over a year.
My mom also flew into town for a few days, so I got to see her while I was in bed.
Since I was released from being an inpatient, the times that my TPN wasn’t running, got significantly worse. While I had been in the hospital, the TPN would run 24 hours. I was still on the 20-hour time period but my body would shake and I would feel extremely weak and often get migraines when I wasn’t connected.
I called my dietician and was told I was going to be sent a glucometer to check my blood sugar when I disconnected.
September 8th, I had my first day back at physical therapy and it was weird to go there with my family members (since prior to June I would’ve never thought they’d meet each other). It was quite shocking for me to be back to a place so familiar in such a bad condition. I was really glad to see everyone and looked forward to going every week-just to see them alone (with the added bonus of exercise).
A typical day for me during this time involved me lying in bed all day except for when I was using the restroom or going to an appointment. I was often flaring which would get me quite tired, but I didn’t sleep very much (especially since I was often woken up or kept up from flares). My dad would work remotely while I was asleep and then would sit and talk or watch tv with me at my bedside when I was awake. My roommate would also watch tv in my bed and bring pets (of friends) so I could have something else to entertain me.
Unfortunately, just as my body was beginning to get into the routine of things, another flare sent me to the hospital, rocking the boat yet again.
Read what happens in the story titled, “The Line Infection Scare.”
That’s Some Serious Cardio!
I lasted four days at home before going back to the emergency room.
On August 24th, I had my occupational nurse arrive at home to see if my house was meeting my needs and what things I could get to help me move around.
They got me approved for a wheelchair and gave us brands to look at to get a shower chair. My apartment luckily already had grab bars in the shower, so we didn’t need to install any.
My TPN was kept in a long rectangular bag that the hospital gave us, and it needed to be carried anytime I got up. I didn’t have the strength to carry it and I had been given a weight limit of how much I could carry on my PICC arm. The ironic thing was my TPN was too heavy for me to be able to carry my own bag. I had my dad carry it for me whenever I needed to get to the restroom.
We set up my desk chair halfway between my bed and the bathroom so I could take a break on my way there. My bedroom was in no way large- I lived in an apartment so I really could not get very far.
My dad slept on my old dorm mattress topper (since he said it was better for his back) right at the end of my bed. This was so he could help me up anytime I moved and could carry the TPN.
The next few days my dad got better at changing my TPN on his own. He had to change it for me since I was still too weak to move and do anything.
On August 25th, my home nurse arrived, and I met the actual one that was going to be with me for the remainder of my care (the one from the previous day was the on-call nurse). They changed my dressing, and it was then that we realized I had vasovagal syncope. From not seeing my dressing change, I had the same reaction as when I had the two surgeries; blood pressure drops, nausea, lightheadedness. The following week we were going to try having me watch the dressing change with a mirror.
I was eating a few things between the days- some of a popsicle, a spoon of dairy free ice cream, and soup broth.
My esophagus was still bothering me, my upper left abdomen was still swollen and stuck out, and I still had my abdominal pain and nausea, so I was taking my nausea medication all the time.
My TPN these few days had a disconnect time; this meant I was only connected 20 hours to the TPN. I would disconnect for 4 hours and then reconnect later. I was always really tired and low energy when I disconnected.
On August 27th, I had my first shower which was really challenging because my PICC arm couldn’t get wet. My dad saran wrapped my arm and I very nervously showered but managed to do it. This was also the first day I was able to make it to my couch (which was right outside my bedroom door).
On August 28th, I was given a new pump for my TPN and told I had been reduced down to 16 hours on TPN. This was the typical protocol for those on TPN and basically each week the time would reduce (again, expecting that oral intake goes up…).
I changed to the new pump and all afternoon my heart kept having palpitations. I grew to be more and more nauseous. At 2:20 p.m. I was coughing (not from phlegm just from my chest pain) and had immense chest pain.
I got up to use the restroom but collapsed before I made it there. My dad was calling my dietician while my roommate brought my desk chair for me to sit in while I was in the doorway of my bathroom. My roommate hugged me as I cried out pain.
My dad called 911 and the EMTs came and put me on the stretcher. We were told by my dietician to stop the TPN pump, so we did.
The funny thing was that one of the EMTs recognized me and said they got me when I was admitted to the hospital the first time. They said they had told their colleague to race to get me because the last time they saw me I was in a really dangerous position.
They said they were glad to see me (which I didn’t mind because it was a familiar face) and that I looked physically much better from when they last saw me (aside from me actively being in a lot of pain).
When I arrived at the ED, everyone continuously kept trying to move the TPN backpack away not realizing it was a medical device. This made me too nervous to sleep or close my eyes because I didn’t want them to accidentally rip my line out.
I had a chest x-ray done and had blood labs taken from my blood PICC lumen.
The main doctor then came in and told my dad and I that all of my labs came back clear, and my chest x-ray was fine. They said they believed the problem was that the pump was too much for my heart. Basically, reducing the pump time down to 16 hours while having the volume as large as it was, overloaded my heart and caused all this pain.
As they asked about my case, they wanted to know if I had the Gastric Emptying Study yet. It had been almost the end of the week at this point (when it was supposed to be done). We explained it hadn’t been and they said that they’d call and get me in to have it done the following week since there was an ‘urgent’ request on it.
I was then released home and realized I needed to be sure to handle my own lines because when I got home my lumens for my PICC were both clogged from being accessed improperly at the ED.
I was sent a new pump that evening and was switched back to 20 hours and my heart was much happier.
Read how the journey continues into the new limbo in, “Is This the Routine?”
Ready to Go Home?
I knew going into the hospital and getting TPN wasn’t going to resolve anything other than just preventing me from dying of starvation, but the realization of this really kicked in the last couple days before I was released.
I had discussed with the chief of my case that I was frustrated to be sent home with no answers and not really feeling any better (again aside from malnutrition symptoms being reduced).
I had been walking around a bit more, but my legs were very shaky, and my heart rate would get in the 160s-170s range when I went a distance longer than the hospital bedroom door.
On August 23rd, I woke up and spoke to my dad about going home. We knew that there was nothing else there for us with me as an inpatient, so we contacted the doctors and told them at around 1pm we wanted to go home.
The process to leave took very long. They seemed unprepared to release me, so paperwork was being made throughout the day. This is when shortcuts and errors started occurring.
As my dad was packing my bag and I was changing out of my hospital gown, we requested from one of the nurses a wheelchair so I could get to my house. The hospital is large, and I had barely made it past my doorway. There was no way I could walk all the way to the entrance and then walk in my apartment building up to my room-even with the elevator- it would’ve been too much.
They came back and said I couldn’t have a wheelchair. We asked why and they said the statement that was put on my release papers said a physical therapist had come and evaluated me and deemed me fit to walk.
My dad and I were in shock since no physical therapists visited me that day. We were told that we likely just didn’t see them since they didn’t interact with me. I got frustrated because again, I keep a detailed daily log of everything that happens in my day and during my hospital stay, I documented every name of every doctor down to every CCT nurse. I did not see anyone.
We were informed by someone else that they might’ve just written that on the file in order to release me quicker, without realizing I couldn’t walk.
You’d think that it’d be easy to just cross that out and change it-nope. Not how that works.
We asked if we could borrow a wheelchair-nope. We called around to different places to see if any of them would lend us a wheelchair or if we could buy one-nope.
I was panicked.
Normally, in an Emma fashion, I would push myself and overdo it but, in this instance, I truly knew that I would not be able to make it to my apartment. I wholeheartedly knew I would collapse at some point in my attempt to get there.
It had become such a big problem that the nurses, discharge team and doctors came into my room and kept just saying “sorry”.
I was crying just from the mess of the day and having to fight for my right to get home safely.
It was 7:30p.m. when we asked for the wheelchair, and it was now many hours later.
My dad thankfully was there to help stick up for me and came up with a plan.
He said that if we weren’t sent home with a wheelchair to borrow, we’d hold them liable for any injuries that would occur on my way home.
This worked.
We were given a wheelchair. FINALLY.
I made it home safely at 11:30p.m. that evening. I met with my home nurse who came at the same time that all of my medication supplies and boxes arrived. My dad and I were frantically trying to learn how to change my line with the nurse’s guidance at midnight.
During my time in the hospital, I had been explaining to my dad how to set up my room for when I arrived back home.
After the nurse left and I got to see my roommate, I quickly dosed off to sleep after the very long and mentally draining day.
Unfortunately, I didn’t stay out of the hospital for long…
Read what happens next in, “That’s Some Serious Cardio!”
Overextended Stay
Nighttime’s were challenging for me in the hospital since I barely got much sleep. I would be woken up either by pump alarms or by nurses giving me my next doses of medications. My medical team would also come by every morning for rounds at 7 a.m. so I was always woken up disheveled with a room of 5 doctors staring at me as I tried to quickly compose myself.
A lot of nights I was left up crying in pain after trying to swallow my pills which would then follow into dry heaving flares. Unfortunately, there was not much that anyone could do to help so I would often ride the wave as best as I could (often having Friends playing on my phone for some comfort). The times it was too bad to be able to have something in the background, I would facetime my dad often at 3, 4 a.m. in the morning.
My inpatient doctors were highly encouraging me to eat, so I finally gave in by fourth day. I had all of my food blended into super small pieces and could basically only eat 2 items on the menu since everything else didn’t fit into my restrictions (which I really didn’t want to invoke a flare). I was only able to eat a little bit before my esophagus bothered me too much and I got in too much abdominal pain to be able to take it. I would also have a lot of diarrhea and constipation from eating anything.
I still wasn’t really able to stand up, so I was given wet towels by nurses to “bathe” with in bed.
On August 21nd, 2021, my dad and I were on a facetime call with my brother. After the call had ended, I mentioned to my dad that my left shoulder was twitching, and it was slowly becoming more noticeable.
After about 10 minutes, my whole left arm was spasming and my left hand was stuck clenched closed. As more minutes went by, my arm was bent up to my chest and my muscles were stuck in that position. It was quite painful with how tightly the muscles were clenching themselves.
We called in the nurses as soon as possible and then my neck started to get stuck bent against my left shoulder.
They got heat packs and after about an hour my muscles relaxed, and I was able to open my hand.
They ran labs in the meantime to check my electrolytes, magnesium, and potassium levels. All came back normal.
About 30 minutes later, my neck started twitching by jerking itself to my left side. I told my dad to call the nurses back.
This time, the heat didn’t work…
The spasming flared into both of my arms, my neck and head. It lasted from 3:30 p.m.-10:30 p.m.
My neck was uncontrollably throwing itself in different directions switching every hour or so to either the right or left side. It was pulling my neck backwards so hard that I thought I was going to hurt myself.
I was crying and freaking out the whole time since I had no control and couldn’t get it to stop. Nurses were consistently calling in different doctors and neurologists while running to take more blood labs. Everything was coming back clear, so we had no idea why this was happening.
My neuro exams all came back clear and everyone in the room said that my movements looked like seizures, but I wasn’t actually having one.
My dad helped hold me up since sitting up was the most “comfortable” position amidst the immense pain and havoc. My neck was bending itself so far back that my forehead would almost hit my pillow if I sat back.
My arms were clenched, and my hands were stuck closed and tightly drawn against my body.
Then, my eyes started spasming.
I got Benign Paroxysmal Positional Vertigo (BPPV) when I was in 6th grade, so I was familiar with my eyes uncontrollably darting around but I HATED it.
Unlike BPPV, my eyes weren’t moving back and forth, they were pulling themselves stuck upward.
I couldn’t see because they were stuck looking so far upward.
Again, this lasted hours.
Doctors came to the decision to try injecting magnesium anyways (even though my labs all came back normal) and to also try giving me Cyclobenzaprine (a muscle relaxer) to see if it would help. The only issue is these things would take 20-30 minutes to activate.
They did eventually get me to be able to lie down and get some sleep and the nurses let my dad stay a bit past the visitor time since I was still freaking out.
I had a few more mini spasms through the night but was sure the next day that they were forever behind me…
August 22nd was a much more normal day; I had been given a “shower cap shower” by one of my CCT nurses which felt so rejuvenating since my hair hadn’t been washed in so long.
I also began doing some small walks around the hallway since my TPN mixture was being more finalized. They had gotten the right balance of nutrients that we needed for my body, and it was already gaining weight and improving.
The thing that became very apparent was how much my leg muscles wasted away while I had been so immobilized over the past 2 ½ months.
I also had been told by my medical team that they needed to release me soon because there was nothing else, they could do for me and that I could only do the last test they needed as an outpatient.
The last test was a Gastric Emptying Study (GES) which involved eating radioactive eggs to test digestive motility. They said I wasn’t allowed to do it as an inpatient because if I vomited, it was considered a “radioactive spill”.
They said they’d release me the next day and that the GES needed to be completed within the same week.
Let’s just say that the plan absolutely did not happen.
On August 23rd, I was very ready to be released.
Over the course of my stay, I was very thankful that my primary care physician visited many times along with my physical therapist to check in.
I was also ready to be done with my daily morning heparin injections into my stomach to prevent blood clotting. I had bruises all over my stomach from those injections and lots of blood stains on my skin.
My dad and I were expecting a calm and smooth discharge from the hospital, but unfortunately, it was not anything near what happened.
Read what happens in the story titled, “Ready to Go Home?”
Let’s Try This Again! I.R. Replacements
At 10 a.m. on August 19th 2021, I had been scheduled to do a Barium Swallow to see if we could find an answer to my swallowing difficulties and pain. My medical team wanted to take advantage of the fact that I was an inpatient therefore, it was easier to schedule more of these exams with me being inside the hospital.
Since my heart rate was so dangerously high all of the time, they had one of my nurses stay with me during my tests to monitor my heart. We had a little portable heart monitor that we took with us, and it was nice having the nurse there since they were really kind and made it so I wasn’t alone.
I was transported to the barium x-ray lab and my nurse was given a suit to put on to protect them from radiation. I was carried and put onto a slab table that could tilt in order to measure my swallowing at different heights.
They had almost given me the wrong solution because they thought I was a different patient but luckily realized before I swallowed anything.
They told me they were giving me the thicker of the two liquid options and that it would taste bad. I had to sip through a straw and then swallow when they positioned the x-ray over my face and chest.
For some of the scans they had the table tilted to where I was having to put weight on my legs and my heart monitor would always go off from the energy it took to do so.
The last scan they had me upside down swallowing the liquid to see if it would work.
I managed to swallow everything without any difficulty or pain and knew if they gave me something solid it would get stuck.
The doctor then gave me a large pill that they wanted me to swallow. It was larger than a quarter (I would say closest size would be to a glucose tablet) and I asked if I could break it in half and swallow both. They said no, it had to be the whole pill. I tried numerous times knowing that this pill would most definitely get stuck, but unfortunately since I couldn’t swallow it, the doctors didn’t want me to push it.
I was done with the test and was really proud of myself for getting through it since I have a lot of difficulty drinking things.
I got back to my room and visiting hours had started so my dad was there with me.
My nurses had started some potassium in my IV line since my PICC Line procedure had gotten pushed back (we were called while I was in the barium swallow and told that I needed to be in surgery but when we asked if I could go after my barium swallow they said no and scheduled me later in the day).
After about 5 minutes on the potassium, I started screaming and crying in pain. It felt like I was putting ground pepper into my blood stream. My veins were burning. My dad pressed the call button, and we got the nurses in the room. We then discovered that for some patients, putting potassium in through an IV can cause a lot of pain so they were going to put it in a different way.
They reconnected some tubes and left the room.
After 30 seconds I started screaming again.
We realized we hadn’t flushed the line of the potassium that was already in the tube (so even though the tube was switched, there was the remaining potassium still being pushed into the bloodstream).
We called back the nurses to fix that-again.
So later that day, procedure time.
I want to preface that I reallllly wasn’t prepared at all for this and didn’t even know that I wasn’t getting it fixed by my bedside like the first procedure.
I was transported to interventional radiology (I.R.) which is like a fancy operating room that has an x-ray so they could see the whole time where the tubing was going as they inserted it.
My nurse tried to get permission to stay with me, but they weren’t allowed.
I was put in a prep space and met with some doctors to sign some forms. It was at this moment that I realized I was going into surgery.
They were reading to me the forms and skimmed over the potential risks and things that were unlikely to happen.
They mentioned that for the procedure they would just uncoil the line and I’d be out. They said the procedure would take a maximum of 15 minutes.
They said in an extreme scenario they would pull out the line and restart, but it was highly unlikely, and I had nothing to worry about.
My procedure lasted 3 hours.
So, ya, I think we can all guess that things didn’t go according to plan…
I was rolled into the operating room (O.R.) and it was exactly like in the movies- 80s music playing and super sterile white room that was very cold.
They carried me onto this cold table, and I spoke with some very kind nurses and doctors whose job was to prep the area for the procedure. They introduced themselves to me and we chatted about life.
As I was getting prepped on the table, I then realized I was going to be awake for the procedure. I figured it’d be fine since they were just basically pulling the line out a bit to straighten the coil…
About an hour in, the O.R. nurse came and sat by my head. They explained that the surgeon would be late, so we were making conversation to pass the time.
The surgeon briefly popped in once to mention they were almost done with the other patient but was waiting for them to be done “draining”.
After 2 ½ hours on the table, the surgeon came in and was ready for the procedure.
They came in and announced that they were having a shitty day and made some reference to Curious George. I was trying to make light of the situation and laughed along the jokes they were saying to their colleagues. They did not introduce themselves or ask me for my name at all. Anytime I tried to add into the conversation they ignored me.
As they were getting more things prepped, I had a monitor to the right of my head that was displaying the x-ray of my chest and a heart monitor where I could watch my heart rate as it continued to climb.
My head was turned to the right, as it was for the first procedure and the surgeon announced they wanted to replace the whole line.
I could tell this wasn’t planned because the prep doctor had to go get new tubing and everyone was asking “are you sure?”. I began to get nervous since I wasn’t planning to be awake again.
The surgeon injected the lidocaine in a few different areas of my arm and began the procedure. After they took out my first PICC Line, they began announcing what they were doing since it was clear they were teaching someone next to them.
I wasn’t a fan of the surgeon’s “humor” or at the fact that they were announcing what they were doing.
They grabbed the scalpel and said, “we’ll find out if the lidocaine works or not if this hurts really bad,” and I was there holding my breath waiting for the pain of being cut into-which LUCKILY the lidocaine worked, and I didn’t feel anything.
I would say it definitely was like something from a horror movie.
As the surgeon was pushing the tubing into my vein, I felt an internal “pop” by my collarbone. The mixture of that and the sensation of someone treating your arm like a toothpaste tube, I had another vasovagal syncope attack.
I calmly announced to the room, “I am just letting you know, I’m about to move (since I had to be still), and I’m going to throw up.”
The surgeon responded by saying, “it wasn’t even the part that I should be feeling like I needed to throw up.”
I ignored the comment as I began dry heaving. The nurse ran over and kept telling me to calm down.
At this point I ignored everyone and just internally tried to distract my mind and not think about how everything was happening internally.
Thankfully, the procedure was almost over, and I had the tubing stitched to my arm.
As I was brought back to my room, I had more dry heaving flares just from the whole experience of the day and explained everything to my dad.
In the evening, a team of dressing nurses came to change the dressing and cut off the stitches. They mentioned that the stitches increase infection risk and they had other tools to keep the line in place aside from stitching.
That night I was FINALLY put on some generic total parenteral nutrition (TPN) since I finally had a line that worked. I still had IV fluids running since I was too dehydrated to remove them.
I was only supposed to stay at the hospital for 3 days to get the PICC, have them customize my TPN based on my body’s needs, and make sure I don’t have re-feeding syndrome.
Since they didn’t have inpatient beds, the PICC was placed incorrectly, and I had more issues over the coming days, my stay ended up being longer than what everyone expected.
Read what happens next in the story titled, “Overextended Stay”.
PICC Placed…?
Total Parenteral Nutrition was explained to us as a last resort option when I was put on a failure to thrive. There are large risks associated with it because a line infection could lead to sepsis. As scary and real as these risks are, we believed this was the best course of action to take based on my symptoms and condition of health at the time. At that point it had been many days since I had eaten and was very much a life and death scenario. There was not an option, it was either this or death.
On August 18th, 2021, I was as ready as I could’ve been for the procedure. Two doctors came in and explained how the procedure would work. My dad was asked to leave the room since they were about to clean and prep the room to be sterile.
They did an ultrasound of my arm to find a viable vein to use that would be large enough to hold the PICC line inside. They normally use the right arm since it is easier to thread the tubing from there into the superior vena cava. However, with the ultrasound there wasn’t a large enough vein for them to use on my right. They searched my left arm with the ultrasound and luckily, they found a large enough vein to use.
I requested some anti-anxiety medication beforehand since I didn’t know until right before the procedure that I was going to be awake the whole time. Unfortunately, the medication did little to nothing. My heart rate was still tachycardic and I was stressed out.
They put a hair net on me and laid out surgical drapes over my body. My left arm was stretched out and I was told to turn my head to the right (away from my arm) because it would be easier to thread the tube up that way. They said the 2nd doctor would manipulate my neck as needed so the tube doesn’t accidentally lodge up into my neck.
They gave a local anesthetic injection which stung but wasn’t bad and then began the procedure.
I couldn’t necessarily feel the tube going in, but I could feel the doctor pushing hard against my arm as if you were trying to get the last bit of toothpaste out. This sensation of them struggling to push it in gave me vasovagal syncope.
I suddenly had a drop in blood pressure and began dry heaving. I let them know and as one was finishing with my arm the other gave me a bucket by my still turned away head, to throw up in.
After the procedure was finished, I was in a lot of pain. I was crying and everyone was trying to calm me down. I had the sharpest pain in my left collarbone and was super nauseous. They brought in a portable chest x-ray to check the positioning of the PICC line.
After the x-ray they saw that the PICC line had accidentally coiled in my vein in an area near my collarbone which is what was giving me so much pain.
They called to see when I could get it replaced but the soonest was the next day.
To attempt to make me more comfortable, I was given many lidocaine patches to rest on my collarbone to try to subdue the pain.
After the procedure I had numerous doctors come in and apologize for the coiling since they said it didn’t happen frequently.
I was able to see my dad again after the procedure, but I was feeling even worse since I was going to have to wait another day to get nutrition started (since the whole time I was just on saline). Since the whole flare had begun in June, I had dropped close to 20 lbs. in weight, and couldn’t wait to be back on nutrition in order to not continue dropping further. Malnutrition gives a lot of awful symptoms, and my body was more than ready to get out of it.
I had a lot of trouble sleeping that night between my collarbone pain, arm pain from the site, on top of all my symptoms I already came in with (like my esophagus spasms and abdominal pain).
Read what happens the next day in the story titled, “Let’s Try This Again! I.R. Replacements”.
The Rollercoaster of Being Hospitalized
In the days leading up to August 17th, I had basically stopped eating (aside from taking syrup by the spoonful to give me enough energy to go to the bathroom) and was barely drinking any water.
My medical care team was going to have me admitted to the hospital on the 14th, but the hospital was booked because of COVID inpatients so each day I received an email saying I needed to wait another day.
My wonderful roommate and my dad found a way of how to get me to the bathroom since I was basically just a lump of a person at that time. They put my desk chair on a towel and would pull me to the bathroom since my dad had a shoulder injury and couldn’t carry me anymore.
August 17th I was woken up at 2:30 a.m. by esophagus pain and felt like I was being choked. This pain remained until 1 p.m. that day. I had a swallowing flare and developed stress hives all over my neck.
By 3:30 p.m., I was so weak that I couldn’t talk or even type on my phone. My dad messaged my primary care doctor and they told us to call 911. My body just couldn’t wait for an inpatient room to be available anymore.
The EMTs arrived and took my blood sugar immediately. It was 42. They informed me that this was dangerously low as many people who have this sugar level and haven’t eaten, can easily slip into comas. They kept asking me what year it was and who was the president.
They didn’t even bother with their normal lift protocol, and one EMT just carried me onto the stretcher.
When I arrived at the ED, they kept moving me between pediatric and adult wards since they didn’t know where to put me. I got a saline drip started with sugars as my dad had to answer all of the doctor’s questions since I still couldn’t talk.
After 3 liters of IV fluids with sugar, my blood sugar levels were now too high, but they said it was easy to reduce it back down to normal.
After getting my sugar replenished, I was able to stand fully upright and walk to the bathroom to pee.
My primary came to visit me in the ED and said they scheduled an MRI (since I wasn’t allowed to do any more CT scans because of how many I had done in Texas) that evening and a couple other procedures while I would be there as an inpatient.
They said there still wasn’t any rooms available, so they’d be moving me around for the rest of the night.
I had a chest x-ray done which came back clear-just to see if there were any hints there.
It was almost 10 p.m. and my dad headed back to my apartment since he wasn’t allowed to stay overnight.
I was wheeled in to do my MRI around 2 a.m. and then my bed was moved into an MICU unit to sleep.
I basically did not sleep at all that night. I was in a room with 8 other very ill patients and the only thing separating us was a curtain. I heard crying, vomiting, and monitors beeping. I was visited by multiple nurses and doctors throughout the night and was still in a lot of pain and uncomfortable, so I only got a few hours of sleep.
August 18th, I started my morning by swallowing 8 pills and then was told to drink some apple juice since my sugars were dropping again.
I needed to use the restroom and walked with my IV pole in the busy MICU unit. On my walk over, I was hunched over.
I walked into the bathroom and saw my face in the mirror which was pale white. When I stood up and was leaving the bathroom, I was suddenly in more pain and hunched over more.
As I walked to the middle of the unit, I dropped to the floor and had a dry heaving flare. I was given nausea medication, but it wasn’t helping very much.
I was moved to a pediatric ED room as they waited to transfer me to the adult GI inpatient ward.
I was moved into my inpatient room at around noon that day. I had multiple CCT nurses (critical care transport nurses) who switched out every day to help me get from my bed to the bathroom.
My dad came to visit me before my procedure. We had been told the night before that my care team had decided to put in a PICC (peripherally inserted central catheter) for my feeding plan instead of an NG tube. They said that anything going through my digestive system would likely not be tolerated so they wanted to bypass it and feed me through my bloodstream.
I was very happy with this decision and felt more comfortable with the procedure since I had watched videos of people putting NG tubes in and wasn’t sure if I would be able to do it.
I had my full inpatient care team visit me and there was SOO many doctors, residents, nurses, CCTs, dieticians, etc. It was insane!
I was informed I’d have to be awake for the procedure and that it would be a bedside surgery, so I didn’t have to leave my room.
During all the times we were waiting, I would talk to my dad about how stage management works and the process of theatre. He always had a plethora of questions on hand, and I loved being able to talk about my passion amidst the chaos.
I had a heart monitor hooked up to me the whole time and it was always alarming since I arrived at the ED. My resting heart rate had always been in the 110-120s range. If I moved or talked or did anything it would jump up to 150-180s and nurses would all come, running in. If I talked about stage management, the monitor would alarm because I was talking about something I was really passionate about :-) .
Find out what happens during the PICC Line Placement in the story, “PICC Placed…?”
The New Symptoms Storm…
On July 29th, I was having a typical day in the flare (dry heaving, swelling, pain, lack of sleep) and I had been watching some TV with my dad. At 6:35 p.m. I suddenly became unable to breathe because of a super sharp pain every time I breathed out. I began to panic, but my dad moved me to the floor and kept me calm.
I had to take super small breaths until I could work up to taking a normal sized breath without immense pain. This took about 2 ½ hours. Because of the intense pain and high stress, I had broken out in hives all over my abdomen. My dad examined my back and noticed it was very inflamed in the space between my shoulder blade and my spine which we thought could’ve been pressing on my diaphragm causing pain in that area and pain breathing.
I had remained in a position for hours with my head kept straight on a pillow in order to not have breathing pain.
During the week, I had also spoken with my dietician, and we determined it was time to transition to a “baby food diet” to eat mostly pureed foods since my swallowing issues were getting worse.
My dietician also introduced to me to the two forms of IV nutrition if I couldn’t sustain my diet which was a nasogastric feeding tube or parenteral nutrition (nutrition through a vein). I was shocked that I had gotten to a point in my health where I was having to even consider this and tried my best the following weeks to do everything I could to continue eating.
This of course, came at a great cost-mobility wise.
My esophagus continued to struggle more as I continued to eat food and I began having trouble swallowing marshmallows and Cheerios.
Also, from continuing to eat, there were many days where my body became fully immobilized. The pain would keep me stuck in bed so my dad would carry me to the bathroom and back.
The breathing flares (as I had called them) began to occur more frequently as the swelling from my abdomen increased. I wasn’t able to sit and watch TV anymore because of it.
I had also been started on Pantoprazole- a different form of acid reducer to see if it made more of an impact.
My diet had switched to foods like applesauce and mashed potatoes. However, I still managed to keep in my 2 waffles every morning.
My pills also began to get stuck so I’d eat Cheerios to try and push them down, until the Cheerios would get stuck too. All of it would remain in my throat for hours until it would finally go down.
August 2nd I began having pain when swallowing water. I also had gone with my dad to get my 2nd MRI done for my toe with contrast. I did the MRI and was really glad my dad had come because it was the worst condition, I’d ever felt leaving the house.
That evening I had soup with noodles that also got stuck in my throat.
From this day forward I was having almost daily flares of large pain so my abdomen would break out in hives often.
By August 3rd my esophagus had really had enough of my eating, but did I listen? -Nope (*not recommended*). I couldn’t talk because of the pain it’d cause, and I chose to continue eating my waffles that morning anyways. I had lots of trouble getting it down and it felt as if someone had stuck a soccer ball into my esophagus. I tried eating mashed potatoes later that day but stopped because it was too painful to get down.
That evening I had 2 breathing flares, more esophagus pain and was no longer able to roll over in bed. I had my dad help roll me over as I cried in pain.
I had asked my dad to move the inflatable mattress into my room that night since I was concerned that my esophagus might close up or that I’d choke in my sleep.
August 4th, I went to my orthopedic surgeon appointment with my dad. They mentioned to me that the MRI showed inflammation markers under the area that was injured under my big toe, but they said they had difficulty seeing anything. They explained that they wanted to do a biopsy in the O.R. to test the tissue and see what’s inside. They explained they’d cut in through the side of my toe since the skin underneath was too fragile.
I explained to them that I was dealing with stomach issues at the time and wanted to do the biopsy but would need to postpone it until I was better.
When I arrived home, I had another flare attack that lasted about an hour and got more hives.
August 5th-8th too many flares happening per day to be able to recount them here. The flares would vary based on the types I’ve mentioned previously (esophagus, breathing, upper left abdomen).
On August 8th, I was helped out of bed by my dad and was hunched over 90 degrees (just like last year) and moved slower than a snail’s pace. Every movement made me nauseous.
That evening I had 2 more flares and just couldn’t handle the waiting game. I came up with a plan to contact my primary care physician that evening because the flares went from being once a month, to every week to almost every hour.
The following day I received many messages from different doctors. My mom had managed to get me an appointment to see a pediatric GI specialist at a new hospital that was known for rare cases. The appointment organizer had called and told me the earliest they could schedule me was in October. I accepted and didn’t really care how far away it was since I had other matters at hand.
My primary care physician called and had managed to get the GI clinic to move up my endoscopy to the following day. We were also going to try some new medications since the past few months I had no safety blanket to fall back on.
August 10th, I had my endoscopy done and it went more oddly than the one I had done in Texas. For one, when I was going under, I started choking (luckily, I fell asleep quick, so I didn’t have to feel that) and when I was done, they had issues waking me up from anesthesia. My dad had come into the back where I was, and I was super nauseous and pale. After remaining there for a while, I got better but I had no idea why I reacted that way.
The evening and following day after my endoscopy my upper left abdomen was more swollen than I had ever seen it before.
In the past week I had also begun having brain fog which meant I’d be mid conversation with my dad and then forget entirely what we were talking about and what I was saying. He’d have to remind me every time as I drew a blank on what my thoughts were.
August 12th, even my own saliva had become difficult to get down. As anything moved its way down my esophagus, it’d get stuck in a different place in my neck, and then chest.
I was eating a piece of a waffle when I started crying out in pain. It took a very long time for it to move all the way through my esophagus and I told my dad that I couldn’t do it anymore- I needed to call my dietician and start one of the IV nutrition options.
On the phone with my dietician, they explained that the safer and more common option to try would be the NG tube. To first administer it they needed to admit me to the hospital so I could learn how to put the tube down my nose. They said they’d follow up once they had more info on when they could get me in.
I had trialed a new medication called Reglan which is a motility stimulator. I had some inconclusive reactions since the first day trialing it caused me lots of abdominal pain. The second day I just had lots of bowel movements, and the third day it didn’t do either.
The Reglan also made me feel hungry which was good and bad. Good because I had lost my appetite many months back but bad because it made me feel hungry, but I wasn’t able to eat. I would get full quickly, but my stomach would still grumble because of the Reglan.
I was then off the Reglan because I just didn’t want to be hungry anymore.
By August 16th, my stomach at this point was very bloated and it often felt like my abdomen was a tight balloon about to pop.
Since my food intake had drastically gone down, I was eating syrup by the spoonful to try and get the last bits of energy to be able to get to the restroom.
Read what happens next in the story titled, “The Rollercoaster of Being Hospitalized.”
The Escalation - My Dad Enters Into the Flare
The new medication I had been given to trial during big abdominal flares was a muscle relaxer called Cyclobenzaprine. I was told to take this so we could see if the abdominal issues were muscle related.
On July 26th I had remained up all through the night from pain. At 8:41 a.m. I had a large flare attack that was unlike any of the others I’d ever had because it maintained a pattern, was in my lower abdomen, and was bowel related.
I’ve always notated which flare attacks were large enough that I could’ve gone to the ED but didn’t. The reason here of why I didn’t call 911 was that I knew there wasn’t a way for them to help and I had more medications at home than what they were willing to give me there. It also was so much effort to go, and I’d end up having to walk all the way back home likely making me feel worse. The flares tended to be long but not last longer than a day, so I knew what things to look out for to signal a real emergency.
I called my dad and had him on speaker phone as I dealt with the flare. As usual, I was where I was most comfortable which was my bedroom floor, so I could move around safely to attempt to find a comfortable position. This was also an easier place to vomit than in my bed. I had taken my cyclobenzaprine early on in the attack, but it didn’t do anything. My pain would cycle from my lower left abdomen to the center of my rib cage, to my left flank, and then I’d get a wave of heartburn. Each time after a couple cycles, I’d be able to have a bowel movement which seemed to dilute the pain. The flare ended at 5 p.m. that evening. I attributed this attack to constipation.
Since the weeks prior I had already been very immobilized in bed, I determined it was time to get help. On the phone with my dad, I asked if he would be able to travel to Boston to come help me.
He got a ticket for a flight into Boston the next day.
I have to say it couldn’t have been better timing for him to arrive because my symptoms had only begun to get worse.
My dad arrived on July 27th in the evening while I was sleeping after finally getting rest since being awake for more than 24 hours. When I had finally woken up to see my dad- the flare took no time to give an introduction; I began a dry heaving flare.
I continued the next few days to sleep minimal amounts through the night. My dad prepared my meals for me, so I was able to stick to my meal routine that I had slacked on the previous weeks due to immobilization.
My dad was able to work remotely and would do work when I napped and would talk with me when I was awake. I felt so fortunate to have him there and he remained very calm during my symptom spikes and flares. This made me feel more comfortable because I didn’t want to scare him based on what was going on. We had great communication and it made a really comfortable environment to deal with everything.
On July 29th I began having new unprecedented symptoms. They took me entirely by surprise and began to make me afraid. My dad came up with methods to help calm me down as we worked through the unknowns together.
Read more on these new symptoms in the post titled, “The New Symptoms Storm…”
Second Flare, Feeling Prepared?
I had purposefully chosen to handle the first month and a half of this flare alone. This illness always reminds me how little control we have over our bodies, and it quickly takes a lot away. I wanted to be able to (as morbid as it may sound) have control over the other scenarios on the decline to make it as pleasant and comfortable as possible. I felt that I had knowledge of how and when to get help, and good resources around me that I used when needed.
I documented on my phone every single day since June 24th 2021, my symptoms, what I ate, what I did, what medications I took and when, pictures of my abdomen, videos, everything. I wanted to be sure I was being as thorough as possible since everything could be used as a clue later on. In fact, this is the only way I’m even able to write these blog posts.
Since I had sipped on that drink, it had burned my throat and tongue for weeks. It had even spurred on my acid reflux to such a point that I had to sleep sitting entirely upright. I would wake up with neck and back in pain but anytime I was lower than 90 degrees, my mouth was burning with acid and filled with a metallic taste.
My sleeping began to suffer since I was up most nights, and my routine became “sleep when your body allows it.”
By mid-July the tenderness of my abdomen and chest had gone up exponentially. Bed sheets and shirts would cause pain and my upper left abdomen had been continuing to swell since the flare began in June.
I was showering less because the energy it took me to do it would end up with me vomiting. I was still managing to eat and would document how much my abdomen would swell up after each meal. I would eat my food slowly since eating became harder and I had almost choked a couple times.
On July 13th, I had an appointment with my primary care physician.
See the thing about this limbo is that your life entire revolves around when your next appointment is. You only know what day it is when you have the appointment and when that appointment’s done, you’re waiting and counting the days until the next one.
I was physically examined and the good thing about having had my physician for a while (as compared to my other doctors that were constantly changing), is that they immediately recognized that I was really not feeling and doing well. They had seen me at my best and this time was most definitely my worst.
Even though we ran tests, and everything came back clear, they knew something was most definitely wrong. They referred me again to see a GI specialist (since the previous request the office said they got lost) but could only get me a nurse practitioner if it needed to be within the next 2 months.
I had taken a urine test at the end of the visit and was given a stool sample kit and then went home. That evening I had the same odd frequent urination feeling as I had a year prior. It was only for that evening.
On July 16th I was able to get in to see a nurse practitioner at the GI office. The morning of I vomited and headed off to my appointment. I explained the history and got frustrated during this appointment. I had been told that my pain was likely due to stress. I had explained that all of the instances around the beginning of the flares occurred during times when things were very mundane and ordinary. As I continued to explain this repeatedly, they mentioned I had seemed stressed. I said, after the line of questioning that yes, having to deal with everyone after the fact made it stressful.
I was then told that I might’ve had a rare blood disease since they had recently diagnosed someone who had this condition, however I had already been tested for it and it was negative. They sent me to get tested again (it came back negative). I was physically examined, and they mentioned that since I had a small torso, if my hernia had been growing in size, it could be causing a lot of my symptoms. To check on this, we scheduled an endoscopy. However, the soonest endoscopy available was October 25th, 2021.
October 25th.
It was July.
I walked home and called my mom completely frustrated and crying. How was I supposed to lay sick in bed to wait for one test for 3 months?!
As I took pills and tried to rest, my mom began calling every hospital in my area and tried to get me on a list to be seen as soon as possible.
July 18th, the fatigue started hitting me more. I was only getting up from bed to eat. I had 2 gluten free waffles every morning, an egg on toast for lunch and dinner, and snacks in between (mainly Cheerios or peanut butter sandwiches). Breathing at this point felt like doing push-ups. Sleeping was even tiring.
On July 19th I had my MRI for my toe done. I had decided to go since I would just be lying down for the scan. It had been ordered with contrast and I had noticed I didn’t have an IV started by the time I went into the MRI room. I had asked the radiologist why they didn’t start an IV and they said they didn’t need it with contrast. I explained that it was ordered with one, but I didn’t have the energy to continue to fight them on it. The radiologist said they didn’t see anything abnormal on the scan.
I had received a phone call later that day from my orthopedic surgeon after they received the MRI. They asked me why it hadn’t been done with contrast, so I explained. Luckily, I had still been scheduled to do the MRI at their office (since we had been waiting to see who could get me in sooner) so they said I’d have to redo it with contrast.
By the end of July, my mouth had been keeping me up at night. I had to sleep with ice cubes in my mouth because of sores and other issues that I assumed were because of my reflux.
Unfortunately, my symptoms began escalating. My acid reflux had only been getting worse- I would often burp and the acid would come up into my nose. My abdominal pain began getting worse and my “safety” medications were no longer effective. I had been taking my dicyclomine, but it suddenly began making my flares worse, so I immediately stopped taking it. I had been dry heaving multiple times a day up through this point. This is also the point when I wasn’t well enough to eat any of my meals at the table anymore and had to bring them to my bed. The pain started to keep me up all night for multiple nights during the week. Drinking water would even bring me stomach pain and swelling.
It had reached a point where it had become too much to handle alone- I spent almost every hour in bed. The times I did get food, I was crawling to the kitchen with my trash can dry heaving and would collapse multiple times from exhaustion.
I realized I couldn’t do it alone anymore and called my dad for help.
Read the continuation of this story in, “The Escalation – My Dad Enters Into the Flare.”
Don’t You Forget About Me!
It had been 2 weeks since I had been back at work after taking time off from my foot injury.
I guess my stomach (which I often refer to as “the bitch”), really wanted me to remember that she was still there…
June 24th, 2021 I am woken up at 6 a.m. from sleep by severe upper left abdominal and flank pain. I run to the bathroom to see if that would help, but after I’m done my pain increases. I drop to my bedroom floor and clench my hands on my upper left abdomen and back. I continue writhing around on the floor for 30 minutes expecting it to go away with time.
After the 30-minute mark I call my mom and ask her if I should call in sick from work-she says yes. I called in sick (which my shift started at 10:30 a.m.) and then proceeded to call my dad.
I left him on speaker phone on the floor as I continued to frantically move around to try and find a position to reduce the pain. This time the pain had developed a sort of “pattern” and would peak at a level 10 every few minutes and then return to a 9. I had difficulty talking so I was mostly heard crying and groaning on the phone. I try taking some Tylenol but when my pain’s high, the dry heaving starts.
It had been 2 hours since the onset of pain and I emailed an emergency message to my primary care physician asking what to do. They advised me to call 911.
Here’s what happened and what I learned not to do for next time:
I was still living alone at this point because my roommate was out of town. I had called 911 but not thought out how they were going to get the door open. I also needed to get a bag together of my things so I could have my ID, clothes (since I was in my pajamas and didn’t want to walk 3 blocks barefoot), etc. I attempted to get some items together but stopped because of the pain. I called my building staff to let them know an ambulance was coming so they could be let in.
I hear them knocking on my apartment door and I manage to get up and walk with my knees to my chest to the door. The EMTs open the door and said, “I assume this stretcher is for you,” which made me laugh inside.
The EMTs were really kind as I directed them which clothes and items to put into a bag for me. The whole time, my hands hadn’t left from my abdomen or flank (and they were getting tired from holding so tight).
8:30 a.m. I arrive at the emergency department, and I’m put in the exact same room I had been in a few weeks prior from my foot injury. I recount the complex history (as you all now have read) to the multiple doctors and nurses I have on my case. Everyone is stumped. My pain begins subsiding at random to a tolerable 7 and I was told that they weren’t sure how to help me. I was offered Tylenol and I told them I was ready to go home (since I knew they couldn’t help me there). They asked me what they should put on the discharge forms, and I said to just put that it was the GERD.
At 10 a.m. (cause discharges take a while) I walked home carefully and was hungry since being up for a while. I made some gluten free microwavable mac & cheese (one of my safe foods) and had a few bites. I then proceeded to take a nap until I was woken again from sleep for round 2 of abdominal pain.
At 2 p.m. I ran to my bathroom as I began vomiting into my trashcan. I call my primary care physician and they tell me to not eat anything else and to just try and keep fluids down.
I try to distract myself by watching Netflix in bed, but my abdominal pain keeps spiking preventing me from doing so.
At 5 p.m. I finally get to sleep.
I had assumed that after this day I would be able to go back to work- Nope.
Ok, so then maybe I just needed a few more days off and then it’d go away- Nope.
Then, maybe a week? - No.
Two weeks? - No.
Three weeks? - No.
Oh no, that’s when I realized-this was going to be like last time…months.
The pain only got worse with time and the pattern fell very similarly to the 5 month flare I had the previous year.
6 days in, I had an appointment with my primary care’s nurse practitioner since I was required to have a visit following up my trip to the ED. It was during this appointment that we noticed I had dropped 7 pounds. The nurse told me they were unsure how to help me, so I asked for them to get me a new GI doctor since the 2 I had seen left. I also asked to be put back on Omeprazole.
Week 2 I was entirely hunched over whenever I stood up. I was progressively getting out of bed less and less as my pain kept increasing over the days. I kept eating less due to a mixture of me not being able to get up to cook things, and because I was still vomiting frequently. I began ordering my groceries and would call my building to carry them up to my door, since when I did head downstairs to pick them up, I would vomit when I made it to my apartment from the effort.
I kept in close contact at this time with my primary care physician and my dietician who I had 2 virtual visits with (past couple months) that had been helpful.
I was taking 4 Tylenol’s daily along with Ondansetron, Omeprazole and Nortriptyline. Unfortunately, none of these seemed to be helping.
I still had my appointments for my foot that I didn’t want to cancel because I had waited months to get. I was seeing the last orthopedic surgeon on my list, and I figured it’d be an easy enough appointment. I was pleasantly surprised when the doctor informed me, they didn’t want to leave my case. They were unsure of what was going on but wanted to try some different tests. They requested that I redo my MRI because it had been over a year since the previous one was done. We scheduled it at 2 different hospitals to see which one could get me in sooner.
I returned home and vomited from the effort of the visit (me trying to act as if everything was normal).
I also had my neurologist appointment to go over the results from my EMG. They said that everything had come back normal and they didn't see any signs of the stomach or the foot being related to a neurological issue.
Since I had been losing more weight, my dietician and I were working to try and not have it drop further. I had gotten a lot of protein drinks and protein soups to try (since I’m not a big drink person). Finding drinks was challenging because they had to be gluten free, GERD free, and dairy free. I had found one drink that I researched every single ingredient prior to sipping it to see if it would be safe.
It literally was the safest drink I could’ve had- even down to the type of protein powder they used, pea protein.
I took a couple sips and stopped when I felt my throat on fire burning. My tongue began to feel like it was burning too. I quickly called my mom and we made sure it wasn’t an allergic reaction. I looked in the mirror and my tongue and throat had been burned by the drink. The only ingredient in this drink that could have triggered this was cocoa powder.
At this time, I was taking Carafate (which the ER had prescribed to me) and dicyclomine which might’ve helped the drink only burn my throat and not damage whatever was going on with my stomach further.
I stayed away from the drinks and tried to stick to protein soups-which one of them, I learned, wasn’t GERD free as I realized it had onions in it which caused more acid. So, at that point I was left eating peanut butter by the spoonful.
I surprisingly was able to gain a pound by doing that.
The next day is when food started getting difficult to swallow.
In the weeks following, I continued to eat 3 meals a day anyways, aside from pain and swallowing difficulties. As I continued to eat, it only ended up making me more and more immobilized.
Read more on how this flare progresses by reading, “Second Flare, Feeling Prepared?”
Black & Blue, In Crutches Too
It was the day after the whole foot injury #2 fiasco, and I had calmed down over the whole situation.
I went to the new hospital to have the appointment with the new orthopedic surgeon that I had booked a visit with so many months back.
I showed them a document I had kept that had the history condensed along with images of the decline in progression of my foot.
They took many notes and wanted to speak with some colleagues to see if anyone had any ideas on the case. We looked at the MRI CD that I had brought from Texas and found that it was too difficult to see anything because there was too much inflammation in the IPJ area. This was a comment I had heard from a few other doctors who looked at the MRI as well.
I was told that the most recent injury that had occurred the previous day, was likely a pressure sore/blister. I needed to be extremely careful that it didn’t rupture or else I needed to return to the ED immediately. The bruising had turned to a blackish color, and I was told to remain off of my feet as much as possible.
When I got back to my apartment, I called my parents and explained that I couldn’t move around, let alone get groceries to be able to cook food for myself. We came up with a plan and my dad got on the earliest flight to Boston to be able to help me. He would arrive two days from when I had called.
For the next 2 weeks my dad stayed with me and helped with errands around the house until my foot bruising and swelling returned to normal so I could return to work.
During this time, we thought we had gotten a glimpse of hope over the MRI because the orthopedic surgeon I had spoken to thought they had seen a foreign body (what they thought was a sliver of a bone fragment) in one of the images. They had more people look at it and realized it was just a computer glitch.
I received a portal message the next day from the orthopedic surgeon saying they spoke with colleagues and had no idea about the case. They said I should maybe try seeing an orthopedic oncologist or allergist to see if they had any thoughts. They wanted me to let them know what ends up coming of everything, and they left the case.
Still on the hunt, my physical therapists helped create a list of doctors I could see and gave me one last name to try.
I scheduled an appointment with one last orthopedic surgeon who happened to be at the same hospital for July 7th, 2021.
I had another follow-up test with the allergy clinic to see if eating chocolate would trigger those odd symptoms I had. To my complete surprise- the symptoms didn’t happen. I had lots of acid reflux, stomach pain etc. but no muffled sounds or dropping blood pressure. I had no idea what made all of those symptoms go away.
I was told by the doctor to get back on Omeprazole because I was likely just having issues with my GERD.
I called my GI office to restart the medication and was told that my nurse practitioner had also left the hospital, and I didn’t have any form of a GI doctor anymore. They were trying to assign me to a new doctor, but I kept getting told my case file kept getting lost.
I had an appointment coming up with my primary care physician so I figured I would be able to get back on Omeprazole when I saw them next. I had also been on the Nortriptyline since mid-May at this point with no differences in my abdominal pain.
My dad had just left (after he had stayed a little extra just in case I somehow got hurt again) and I had my appointment for my EMG of my leg and lower spine on June 21st.
I went in knowing it was going to be painful, so I was ready that day for when it came. The doctor came in and explained it was going to be painful and if I needed them to stop so I could take a break, to let them know.
The EMG requires them to put in a needle into different muscles in your foot, leg, thigh, and lower back where they send electrical pulses to see if the nerves are firing correctly.
It was painful but I was surprised at how well I kept everything together. The doctor even commented afterwards saying they’d never seen someone be able to tolerate it so well (perhaps my chronic pain history helped me tolerate it).
The neurologist who performed the exam explained they didn’t see anything, but it didn’t mean that it couldn’t be a small fiber neuropathy. They told me the neurologist on my case would discuss it with me further at my next appointment.
I felt relatively normal within this new limbo of getting my foot case dropped left and right and began introducing the case to doctors by saying, “I don’t expect you to help me, I am just asking for you to look at this and then I’ll leave.” It just became the norm that I was just going to doctors to add another tally to the number of them I had seen at this point.
This is why, when the next doctor answered my comment by saying, “I’m not going to leave the case,” I was taken aback and shocked.
This last statement jumps the storyline a bit since a lot more happens between June and July. Read more on how the story unfolds in the post titled, “Don’t You Forget About Me!”
Move & You’ll Bruise - The Hotel, Fire, Crutches Story
It was a Saturday evening on May 22nd, 2021, and I had just made it home after a long shift at work at about 8:30 p.m. I was sitting at my dining table enjoying dinner and Netflix alone- since my roommate was out of town for the summer.
Suddenly, the power to my apartment cuts out leaving me in the pitch black, and the fire alarm for the floor and building start alarming. My phone (of course) was dying and I quickly plugged it into my laptop and called my parents as I tried to figure out what was happening.
As I looked out my window, residents from the building were all pouring out into the street below. I stayed put since fire alarms often went off in my building, and I wanted to be sure I had a reason to go outside on a Saturday night alone since I was around a lot of bars.
The fire chief came on the loudspeaker and announced that everyone needed to vacate the building because of a fire.
At this point, my laptop was almost dead and so was my phone. I hung up the call with my parents and made my way downstairs to the jam-packed lobby. Families, college students, people with red solo cups and dresses all packed into the lobby.
Staff of the building alerted us to all go out into the street, so I went outside to where the 5 fire trucks were surrounding the building. To try and figure out what was going on, I spoke to a couple of the residents around me to see if I could catch a story. After many more hours stuck outside waiting, I started seeing people leaving the building with suitcases. I went back inside and found a staff member and asked what was going on.
They said the trash chute in the basement had started a fire (perhaps someone threw something out that caused it). Because it caught fire, the basement sprinklers had been going off for a while. They flooded the basement and reached the generator for the building and caused the power outage. They needed everyone to find a place to stay because they couldn’t get maintenance there until Monday.
I explained to the staff that I needed to go back upstairs to get my medications etc. to be able to spend the next 3 days elsewhere. I quickly grabbed my stuff and then headed out to the eerily quiet streets.
With the 10% left on my phone, and it being about 1:30 a.m. in the morning, I contacted my parents explaining that I didn’t know where to go. They booked me a hotel about 10 blocks away and I quickly raced my way over.
The frustrating part about this whole scenario was that they days kept having to be extended in the hotel. The building emailed us daily and kept saying “extend your stay another day,” and another and another. We were allowed into our apartments followed by security with a 10-minute timer, so you could grab clothes for work.
I struggled with my meals this week since I didn’t have access to my kitchen and eating out was a large risk for flares, so I tried to stock up on microwavable mac & cheese.
I had to take photos of receipts to (later) file an insurance claim and throw out food that spoiled in my fridge during one of my “10-minute” visits.
I still had appointments going on at this time alongside work. I had visited an allergist to see if I was allergic to chocolate since I had been having weird reactions to it just in the past year. Everything came back clear.
It was May 26th, and I received an email at about noon explaining that we could finally move back into our apartments. I was ecstatic and quickly packed up all my bags in my hotel room. I didn’t want to take multiple trips, so I carried all of the heavy bags with me in one go.
I think we can all guess where this was going… the “one trip” idea really wasn’t a good one…
I was walking quickly as I was worried, I was going to have an abdominal muscle cramp because of the weight of the bags. As I walked the crosswalk to my building-
Step- OUCH.
Oh no.
I knew what I had done.
Well not really- I actually thought my bone had ulcerated through, so it wasn’t exactly that (LUCKILY), but I had injured my already injured toe.
I limped my way into my building and was biting my lip under my mask in the elevator to not cry out in pain.
I opened my door to my apartment, dropped my bags, quickly examined my foot, and headed to the emergency department.
What a welcome home right?
As I limped my way 3 blocks to the emergency department, I was in a lot of pain.
When I had looked at my toe prior to leaving- my once thinned out atrophied area was filling with blood under the skin and turning a dark purple.
I remained in the waiting room for about half an hour with a once again almost dead phone (I really wasn’t prepared for these kinds of things).
All I had on me was my backpack with my wallet.
I sent an email to my primary care physician that I was in the hospital and wanted to know if they were able to come see me in the ED since I wanted to know more on the state of the injury.
I was moved to a different waiting room where I remained for another hour.
I was examined by an ER doctor in the hallway on the condition of my toe. I was trying to explain the whole history and explained how thin the skin was underneath. The issue was it didn’t look thin because of how swollen it had just become. It had looked normal in terms of size.
I was very stressed and annoyed with my whole 5-day journey and became agitated with the doctor.
They then told me that there were “sick children there” and that this wasn’t a big deal. This statement really didn’t help the whole situation.
I finally got a room and x-rays were done. Nothing was broken, and I had an appointment with a new orthopedic surgeon the next day, so they figured I could get more answers with them.
My primary care doctor did come to visit and examined me as well.
Getting discharged took another hour or so and I was given crutches since I still couldn’t walk, and I was told to be careful not to accidentally step and damage things more.
I had never walked in crutches before, so I quickly learned and was sent off.
I struggled as I left and realized that I didn’t think I could make it home. It was now about 5:30 p.m. and I was sweating in the heat and again, had a dead phone.
I started knocking on taxi windows asking for a ride, but they all had told me they were either on break or waiting for someone. I kept making my way down the block taking breaks and began to realize that I was going to have to make it home hell or highwater.
I crutched my way home 3 blocks on the uneven pavement and when I finally made it, I closed my apartment door, and collapsed to the floor, just bawling my eyes out.
Find out what happens next in the story titled, “Black & Blue, In Crutches Too”.
The College Food Trials & Tribulations
I had made it to college and things were relatively normal aside from my very odd diet. It took a lot of practice to remember which things I could/couldn’t eat, and I would often forget and eat something gluten free but not GERD free or vice versa.
Since I really didn’t want to risk having a 5-month flare in my dorm, I stuck to 10 foods as a kind of “control variable” to test other foods against to get more of a sense of where my boundaries were. Also, since I was in a dorm with no access to a kitchen, I had to take that into consideration with my meals.
My ten foods consisted of:
1. Gluten free plain microwavable chicken
2. Gluten free microwavable mac & cheese
3. Lightly salted lays chips (for some reason I would react with the regular ones)
4. Marshmallows (which were lifesavers for my GERD)
5. New York Sharp Cheddar cracker cut cheese
6. Gluten free crackers
7. Eggs
8. Honey Nut Cheerios
9. Plain microwavable mashed potatoes (or a baked potato)
10. And for some bizarre reason-pickles (I didn’t seem to react to them which was a huge plus considering it was the only thing on this list that tasted like something)
So, following to this helped keep things relatively stable. To obtain these foods however, I had to visit 2 different grocery stores since the GF items were only available at certain places. I had tried eating out and eating at my school but with how many foods I couldn’t eat and had to be careful from, it was too large of a risk (since most places don’t stray from all the GERD triggers) and I had already had some flares from their foods.
I had a virtual visit with my GI specialist from Texas to tell them that I was still having lots of abdominal pain and that the area where my hernia was located was really bothering me. My GI specialist was unsure, told me to get an x-ray done (which made no sense…) and then left my case.
September 19th, 2020, I ate 1 gluten free mini chocolate chip cookie-big mistake. I had the same reaction as when I had eaten chocolate over the summer, ears were hot and muffled, dizzy, blood pressure dropped, pain and nausea. It was odd and lasted in a 3 day “mini” flare. This ‘chocolate’ reaction occurred 3 more times over the semester (even with items just containing cocoa).
October 5th, I was finishing my zoom classes from my desk at 9:50 a.m. when I suddenly became doubled over in pain. I hadn’t eaten anything aside from my 10 safe foods, so I had no idea what the cause was. I had upper left abdominal pain that felt deep behind my rib cage and was exactly like those times in January and April. I had difficulty getting out of my chair and began to get nauseous.
Once again in an Emma fashion (*again NOT recommended*), I took a nausea pill and proceeded to go to my next in person class. I honestly don’t even remember what happened at all in that class. The whole time I was just trying not to vomit or look like I was in pain. I had messaged my primary care doctor and we scheduled an urgent in office visit immediately after my class. We did a full exam and ran blood tests, but we didn’t seem to catch any answers. I was given materials to collect a stool sample to see if that could give us any hints. I was referred to see a new GI specialist in November since my abdominal pain was bothering me.
Let me tell you, collecting a stool sample while living in a residence hall- not the most comfortable thing to be doing!
The following day I was still nauseous and in pain, but it was manageable and I had dropped off the stool sample at the office. I headed to the pharmacy to try a new medication that my doctor wanted to see if it would help.
It was called Voltaren Gel and it was a type of NSAID cream that was mostly used for those who have arthritis. I was instructed to put it on my abdomen to see if it did anything. I tried it for a couple weeks and had no improvements.
My mini “flare” lasted through October 8th and I was persistently on edge since I was hoping the flare wouldn’t get worse.
October 19th -the previous mini flare luckily was “mini,” and this second mini flare was caused by food. I hadn’t realized that at the grocery store I bought a different shape of pickles-yes, you heard that right, shape. For some completely absurd reason, my body reacted to the ingredients of these pickles that were a different shape from the normal ones I usually bought. Perhaps they added different amounts of the ingredients?
Anyways, I was left pressing my left abdomen and my back in (like all those times in the past) and spent a couple days in bed.
October 26th- another random day of a spike in pain unrelated to any food. I had been having off and on mini flares the past 2 weeks (some from food, some not) and it kind of added up to feeling extra crappy this day. I had to turn my desk around in one of my in-person classes and almost vomited right then and there.
During one of my visits with my primary care physician, they performed a Carnett’s test, and I had a positive result. This meant that I also had some sort of nerve/ abdominal wall pain syndrome likely due to an entrapped nerve in my abdomen (which they believed could’ve been caused from being in pain for so long, the nerve never stopped firing). They wanted to wait until I saw the GI specialist to confirm this.
I saw my GI specialist in November, and they also found that I had a positive Carnett’s sign. I was diagnosed with Anterior Cutaneous Nerve Entrapment Syndrome (ACNES). I was told to begin taking a small dose Nortitryptiline (an antidepressant used for nerve issues) to help with the nerve pain. I was also told to wean off of my Omeprazole since I had been told by my previous GI specialist to take it “indefinitely”.
November 5th, I began having chest pain every time I was exhaling when I breathed. I had called my primary care physician and was diagnosed with pleuritis. It lasted about 2 weeks and I was ready to head home for Thanksgiving/winter break (which they grouped together because of COVID so people weren’t traveling back to campus).
I enjoyed my winter break in Texas, but my family wasn’t used to all of my dietary restrictions because I had really gotten to know them when I was away at college.
On December 3rd, my super sweet brother wanted to cook the family food for breakfast. He had made bacon and eggs for my parents, and I woke up about an hour later. He made me plain scrambled eggs and hours after eating, I had a flare. What had happened was he made my eggs in the same pan he had cooked the bacon in earlier and didn’t realize. I was dry heaving, and in lots of abdominal pain and remained in bed for the next few days.
January 5th, 2021, 3 hours after eating dinner with my family I proceeded to have a large spike in pain and was crying. I had been weaning off of my Omeprazole like my GI specialist had requested and I had lots of stomach acid in my mouth all the time.
Eventually I managed to get off of the Omeprazole and continued within the limbo of the new normal.
March 18th, I had eaten some cheese and crackers after coming back from rehearsal at midnight and ended up having large amounts of abdominal pain causing me to hunch over slightly. This died down after a couple of days.
By May, I had moved off campus into an apartment so I could cook for myself and feel safer with the foods I was eating (since I knew what would be going into them). My mom had come into town, and we made green beans in my air frier using avocado oil. Well for the next four days, I had a mini flare due to the avocado oil and the fact that my stomach had trouble digesting any vegetables with fibrous textures.
I scheduled an appointment to see my GI doctor, when I was informed that they left the hospital. I was seen on May 11th by a nurse practitioner who apologized that they couldn’t help with my case. They asked what it was that they could do for me, so I asked to see an allergist to test if I was allergic to chocolate and I asked for a referral to see a dietician so I could expand my at home diet more.
Otherwise, summer had just begun, my apartment allowed me to expand my diet a bit, and I had gotten a job to occupy my time. I was ready to continue my venture into finding out what was wrong with my foot!
Read what happens next in the story titled, “Move & You’ll Bruise-The Hotel, Fire, Crutches Story”.
Are These Boots Made for Walking?
I had arrived in Boston and was ready to put the past behind me and work towards my future!
I had started in person classes and began struggling to walk about the city’s uneven sidewalks in the CAM Boot. I also realized that I was not qualified to train myself how to fix my gait after so many months of it being weird because of limping.
I decided it was time for physical therapy.
I researched around the area and found a nearby physical therapy office to where I was living. I realized that I needed a referral to be able to start there, so this is also when I found a primary care physician.
I started going on September 12th and was able to finally get out of my walking boot on September 16th. I still had pain under my toe when I walked so, I was given an insert that had a cut out under my foot, so pressure wasn’t applied to the area of pain when I walked. It was extremely helpful, but I was bummed that my pain was still there after not weight bearing and the injection.
As I continued to walk for the next week, my foot started to change drastically. The area where I had my single injection done, atrophied all of my tissue away. It was super red all the time and the skin was getting more and more paper thin.
In physical therapy I had tried electroshock therapy to see if it would reduce some of my inflammation but unfortunately my skin had a bad reaction and was red and puffy for a few hours.
I decided it was time to call my podiatrist.
I did a virtual visit with my podiatrist who did the injections and showed them what had happened to the skin. Unfortunately, my doctor did not know and requested to leave my case.
Searching for answers, I found a new doctor in Boston.
I saw an orthopedic surgeon and did more x-rays to see what was wrong. They didn’t show anything, and the doctors were very puzzled as to what was happening. I was told to keep using the cut-out inserts and to only ever wear my Doc Martens to protect my toe from bending and potentially damaging it more. I was also told to never do injections again because they believed it would cause more irreversible damage. They said the skin would likely never go back to a normal color.
When I went back to Texas for winter break (which had been extended because of COVID) I decided to pick up physical therapy there, so I didn’t lose the progress I had made so far.
The physical therapist there was very puzzled by the case, and we took it as a time to do trial and error to see what we could do about the pain specifically. Their guesses as to what was wrong was potentially an atypical case of FHL tendinopathy.
We found that my toe was hypersensitive to different surfaces and felt like “fireworks” and that pain was only lessened by doing a plantar flexion exercise. I had some tingling sensations when putting on exercise bands which thought might’ve been some sort of spinal or nerve issue. We began implementing sciatic nerve glides which removed this sensation entirely.
When I came back for the spring semester, I continued to maintain what I did have at physical therapy and kept searching.
It was about February when I started noticing increasing bruising appearing under my toe. If I walked on surfaces such as hard floor without my foot pad, I would gain more bruises just from the pressure of walking. We also noticed more nerve related issues like my foot falling asleep quickly when it was raised for exercises.
Then, another muscle started atrophying- one that ran under my big toe and continued under my arch. We began doing isolated exercises and trialed me changing into sneakers to see if this could help build up more of the muscle that was atrophying away.
I went to see a new podiatrist in March to get their opinion on the case.
They said had only seen something kind of similar to my case 20 years ago with a dancer who had 20 injections in the same spot. This doctor did multiple x-rays over the months I visited them and determined something as a part to the puzzle. The bone structure of my foot genetically, has my big toe joint in a position where it gets “locked” and can’t fully bend when walking. This creates extra pressure and stress under my big toe which is likely how my tissue atrophied away so quickly (from the pressure of my shoe rubbing under my foot when I walked).
I was told to switch back to my Doc Martens as the sneakers were making the atrophying quicker. I was also told to get the Vasyli Dananberg Orthotics to help with the “locking” issue.
The podiatrist also informed me that I needed to be VERY careful with the skin under my toe because it was so thin that bone could ulcerate through. This doctor began researching into the potential of doing fat injections or a skin graft. I kept everything on hold here as a new issue began developing.
By the end of March 2021, my hands started beginning to get stuck closed when I was grasping things, so my physical therapist recommended me to see a physiatrist & neurologist to see if maybe the stomach and foot issues were related.
I saw the physiatrist who said they didn’t believe the cases were connected. They also recommended me to see a neurologist to get an EMG done to see if that lead to any answers.
I scheduled an EMG for June 21st, 2021, and scheduled an appointment to see another orthopedic surgeon at a different hospital to get more eyes on the case.
I continued to do physical therapy and got my muscle tone up, but we had gotten to a point where we couldn’t advance further because the toe injury was becoming a hinderance.
Read more in “The College Food Trials & Tribulations”
Endoscopies & Knee Scooters- Ready for College!
I had lost a lot of weight from not being able to eat very much through the whole 3-month fiasco. I was slowly starting to gain some of it back, until all of my symptoms turned the corner AGAIN.
I had no appetite, I was feeling full too quickly, having sharp upper left abdominal pain, nausea, and began having this excruciating pain in my rib cage from laying down that persisted every day.
On July 10th, 2020, I called my GI specialist and explained that my symptoms had all returned after finishing my 2-week medication treatment and I began to cry on the phone. It was quite an uncomfortable phone call as I was told by my doctor that I was being dramatic, and that H. Pylori wasn’t a big deal. I explained that I was no longer comfortable having them as my specialist and switched to a new GI specialist at a different doctor’s office.
I had a virtual visit with the new GI specialist, and we determined that we wanted to do an endoscopy to do a biopsy to check for H. Pylori and a biopsy to test for celiacs.
July 20th, 2020, I rolled my knee scooter into the endoscopy center and had to go in alone-again, because of COVID protocols. I filled out so many forms and was asked if I had a power of attorney or a living will since I would be going under anesthesia. No one in my family had anesthesia before so this was a bizarre question to have to think about at the age of 18.
So then there I was with my bite block in my mouth (they use it to prop your mouth open so they can put the camera down into your stomach) and as they started injecting the anesthesia through my IV, I asked myself in my head, “Huh, I wonder how long it’ll take until I-“
I woke up feeling super tired and very groggy. Since the knee scooter was considered “machinery” I was not allowed to operate it and was wheeled out in a wheelchair. My mom had said that everyone after their procedures came walking out but I was so anesthetized that I was falling asleep in the wheelchair.
Fast forward to more weeks in bed awaiting results (once again the limbo…) and we finally got the results on the phone. I was diagnosed with a small Hiatal Hernia, chronic gastritis, GERD (gastroesophageal reflux disease) and another weak positive for celiacs. The H. Pylori biopsy came back clean, and my new GI doctor asked how it was tested originally. It was then that we learned that I might’ve never had H. Pylori since it was diagnosed only using a blood test before, and my symptoms were bad again after treatment.
I was told to avoid all things gluten and to follow a GERD diet and watch how great I would feel. This was actually partially true!
So then began the trials of trying to stick to 2 new diets after never having food restrictions in my life. I learned that I could eat less and less because certain foods would cause a spike in my symptoms.
I even had an instance where I ate a gluten free chocolate chip cookie and many hours later had a bizarre reaction. I was woken up from sleep and headed on my knee scooter into the bathroom since I was feeling weird. I went pee and suddenly my hearing went muffled, as if I was underwater. I stood up to walk back to my bed when suddenly I looked at my face in the mirror and it went pale white. My ears felt like they were on fire. My blood pressure dropped, and I started getting dizzy, nauseous, and had an increase in my upper left abdominal pain and fell to the floor dry heaving. I called my parents for help and after a few hours the symptoms went away.
Things were weird when it came to food from that point on, so I tried to keep my diet as simple as possible in order to not rock the boat.
Sticking to this diet did make things return to a sort of “new normal” and I clung to it tightly as I was about to leave for college.
It was a week before flying out that I realized I couldn’t take the knee scooter with me. I began relearning how to walk with my CAM Boot at home so I could at least make it through the airport. My legs overall had lost a lot of muscle because I was in bed since April (it was now the end of August).
I realized I needed to find a shoe that would be similar to the CAM Boot for when I would be able to transition out of it, that could be worn for show blacks and with any of my clothes. I then purchased my first pair of Doc Martens.
Off on a plane I went in my CAM Boot feeling ready to start college, only with a lingering feeling in the back of my mind that the stomach journey wasn’t over yet…
Read what happens next in the story titled “Are These Boots Made for Walking?”
Orthotics, Injections, MRIs, Oh My!
So, after spending the past 3 months focused on my abdominal issues, the foot pain wasn’t too much of a bother because I was in bed and off my feet.
After trying the self-adhesive wrap for a week, nothing had changed. We went back to the podiatrist and my custom orthotics had finally come in. After trying another week in the orthotics, I was told by my doctor that we would need to try cortisone injections.
I wanted to do further digging before getting injections, so I went to a different doctor’s office and got a new podiatrist.
They said they wanted to get an MRI done on a 3T scanner to try and see what was going on with my left foot. They said this way we could see if there was a subhallacal sesamoid and if there was, we would do surgery to remove it (but there was a risk it wouldn’t happen because of new COVID protocols only allowing emergency surgeries). They also wanted to resize me for new orthotics, so I was measured for those, and they said they would likely have to do cortisone injections depending on what the MRI showed.
The process of getting my MRI done was a lengthy one because it ended up getting rescheduled 3 times to different locations since none of the offices seemed to have a 3T scanner.
I finally got the MRI done a couple days before graduation and was awaiting my next office visit to hear the results.
July 9th, 2020, I graduated from high school! I managed to walk on the outside edge of my foot onto the stage.
The very next day, I was sitting on the couch and my dog was trying to jump up but ended up falling off. As I dove forward to catch him, I slammed my left foot head on into my coffee table. The joint of my big toe was swelling up like a balloon since it absorbed the hit and it hurt a ton. I iced and elevated it and had some Tylenol as we kept a close eye.
The next day there was some bruising around the joint of the 1st and 2nd toe and I couldn’t walk. So, my superhero family once again had to 2 seat carry me around the house.
July 15th, 2020, I went back to my podiatrist’s office and explained that I hit my foot after already getting the MRI done and that I didn’t know what might’ve changed. At this point I was able to walk again so the doctor wasn’t concerned. The podiatrist said the MRI showed bone bruises on my big toe and my left foot sesamoids. They told me that hitting my foot probably just increased swelling in the area. They also didn’t see any accessory sesamoids in the IPJ, so I did not have subhallacal interphalangeal sesamoiditis. The doctor diagnosed me with tendinitis and said there were likely tears. I then got my corticosteroid injections done.
Ah the injections, I wish I had known how much these would’ve affected me in the future…
My foot was first sprayed with a freeze spray to numb the area, then there was an injection done to the top of my big toe, and I assumed that it was done- but I was told to lay back down because that was just more numbing medication. These numbing medications hurt so much! Then I got 1 injection of corticosteroid in 2 places under my big toe. It didn’t hurt, it just felt like a lot of pressure.
I was put back into my CAM Boot and told to rent a knee scooter and not walk or bear weight until I go to college (which was about a month and a half away).
When I got home the knee scooter arrived in a couple hours and I had started seeing some light bruising on my big toe joint (which we were told was to be expected). Because I wanted to be able to move around for myself and not have to be carried down the stairs to get food, my mom switched rooms with me so I could be downstairs.
For the remainder of the months before going off to college, I did exactly that, used the knee scooter always and did not walk until I went to Boston.
This was not a good idea…
See what happens next in the abdominal journey by reading “Endoscopies & Knee Scooters-Ready for College”.
17 Pills A Day Won’t Keep the Doctor Away!
So, after changing my pill regiment (from the post titled “The H. Pylori Story”), I then began the new daily routine of having the whole day structured around when I was taking my pills.
Every morning for two weeks, I took a Pepto Bismol pill (because I’m not good with drinks) then, my 3 antibacterial medications (for the H. Pylori) and ended the morning with my Omeprazole. This was the standard unless I needed nausea medication and pain meds on top of that.
Throughout the day, I took the 3 antibacterial medications 2 more times and, in the evening, finished with the same pill routine as in the morning.
Needless to say, I began to hate the sound of pill bottles being opened and began to sense when it was time to take my pills without seeing a clock.
Four days after starting the H. Pylori medication I was able to slowly get back to moving around on my own. One of my medications wasn’t coated so on about the 8th day in, I started vomiting it up because of the bitter taste.
My mom saw that the pills were safe to crush so we would put it in a clear capsule so I could stop vomiting it back up.
The two weeks of the pill regiment went fairly well in comparison to the “hell weeks” and I was able to stand up and move around on my own by the end of the first week.
I still had quite a bit of abdominal pain and tenderness and the swelling was still present, but we figured everything was fine since I could move again.
Since I was feeling better, I had scheduled and gone to more normal appointments, like dentist visits. When I had gone I was told that because I was taking so many pills for such a long time, I had gotten some sort of tongue growth that required -funny enough- medication to resolve.
Afterwards, I began focusing my attention back to my foot injury which had been put on hold because of all of the abdominal issues.
This relief from the pain unfortunately doesn’t stay away- read more on the next story titled, “Orthotics, Injections, and MRIs, Oh My”.
Additional Site Information:
These posts are only reflecting my experience and therefore not the overall experiences of others who have had certain medical procedures, conditions, and/or medical devices.
• Content Warning: Blog posts cover weight, eating habits, and medical experiences which may be triggering for some readers.
• Accessible captions are available on blog post images by clicking on the white dot (for mobile devices) or clicking on the image and scrolling the mouse over the image (on laptops and computers).
• Site content is available in Spanish for readers who do not speak English or would prefer to read it in Spanish however, some jokes may not read correctly due to them being American cultural references. /El contenido del sitio está disponible en español para los lectores que no hablan inglés o que prefieren leerlo en español; sin embargo, es posible que algunos chistes no se lean correctamente debido a que son referencias culturales estadounidenses.
*All medical teams and hospital names have been excluded from all stories for privacy reasons. *