Tuesday December 3, 2013
I woke up at 8:00am after a unrestful night full of sweating due to my fevers. This on top of chronic fatigue was not going to make my day fun. I took my meds before getting up, in order to help keep my morning POTS symptoms at bay. I lay in bed for an hour, reminiscing about yesterday, a day where I spent 7 hours in the ER as a result of two falling/prefainting episodes and a mildly sprained foot/ankle. My fevers, POTS symptoms, and lack of IV fluids caused me to spend my day in the emergency room instead of in class, where I was suppose to be presenting a final project for one of my classes. As I lay there, I checked my email to see a response from my infectious disease doctor stating that I probably do not have an infection and that I need to see a neurologist. Frustratingly pushed off to another doctor yet again, because no one knows what to do with me.
Next step, get out of bed and go pee. This simple task usually foreshadows how the rest of my day will go. Upon standing, lightheadedness and rapid heart rate happen immediately. I could feel my heart beating fast in my chest, like I just ran a few miles but all I did was this one simple task that most people take for granted. After using the bathroom, I took my vitals for the first time today. This has been an important task in tracking my symptoms. Blood pressure good, standing heart rate at 120ish(resting at 75), temp at 99.4. Not bad for me. I stood by the sink to brush my teeth, but my heart rate quickly approach the 170s and the chest pressure began from having my heart beat so quickly. I had to sit down to finish this easy task. Once completed, I sat back in bed and starting working on school work, as this is the last week of the quarter. In the midst of doing work, I decided to make instant oatmeal breakfast. Lately my meals have consisted of anything that goes in the microwave or anything I can eat straight from the refrigerator because I cannot stand long enough to cook without becoming symptomatic. I couldn’t even make it through the minute it took to warm the water. My heart started racing and I got lightheaded. Everything in my line of vision started to go gray. If I let this continue, it would be the prelude to a fainting episode. I had to rapidly sit down on the floor before I ended up there involuntarily. This also increased my temperature to approximately 100 degrees. After sitting on the ground for a few seconds, I stood up, got lightheaded again but proceeded to make my oatmeal.
After finishing my oatmeal in my room and proceeding to work on projects for school and my job, I had to make a decision about class. I could get dressed now and go to one of my classes, but then I probably wouldn’t feel well enough or have the energy to go to my second class in which I have a final presentation. I also probably wouldn’t feel well enough to drive home after being on campus for 6 hours. I had already missed one presentation, so I couldn’t miss the one today as well. This meant I had to miss my first class and study independently in order to keep up. I have to make decisions like this everyday, prioritizing and strategizing every aspect of my life. After this tangent, I went back to sitting in bed and working on things for this week but was interrupted when I received a phone call from the hospital stating that my doctor hasn’t put in the order for my port so that I can resume IV hydration. This meant I may not be able to have the surgery on Thursday and may have to wait if he doesn’t put the order in soon. After some calls and emails, the order was sent through and I am all set to get my port on Thursday. Not too much longer later while doing my homework, I realized my wireless printer was out of paper. Not thinking, got out of bed a little too quickly to load the printer paper, grayed out(everything goes dark and gray) and fell. No injuries or fainting this time.
Promptly at noon, I took my meds again to ensure I didn’t have a major crash(similar to a crash from an energy drink but like ten times worse) and then it was lunch time. I got back out of bed and upon standing, had extreme lightheadedness and graying out. I went to microwave my lunch(thank God for Trader Joe’s microwavable meals) and had the exact same experience as this morning. I stood up and took my food to my room to eat while I finished a few assignments. Approximately 30 mins after eating, my temperature went up(every peak is marked by sweating and hot flashes) to 100.9.
Despite not feeling well, I had to get dressed and get ready for class, when my fever peaked again at 100.4. While getting dressed, I had to pick up a shirt that fell on my closet floor. I crouched down and upon standing, I got lightheaded, had a rapid heart rate and grayed out. Luckily again, no falling or fainting! I drove to school, which I am thankful that my POTS usually doesn’t get symptomatic while I am driving, but my temperature peaked again at 100.6. I parked in my handicap parking space(a life saver) in the parking lot across from the school of public health. My foot was hurting from my fall yesterday and that short walk(like a block) made me extremely tired.
At school, I settled in my classroom, refilled my water bottle(have to stay hydrated) and waited for class to start. Just the tasks getting to school wore me out and I had hoped that I could sit through the entire 3 hour class, which involved my ten minute PowerPoint presentation. My presentation was during the second hour of class. In between the first and second hour of class, I took my meds and we had a bathroom break. There is only one stall in the closest bathroom, so I traveled downstairs to another bathroom. Of course, I got dizzy and lightheaded standing up after using the restroom. On the way back upstairs, I decided to take the elevator to help avoid the stair but still ended up getting dizzy going up only one floor. This set off my fever (couldn’t take my temp in class lol) and an increase in POTS symptoms. Then it was time for my presentation, standing up in front of the class. My POTS symptoms usually increase while standing, and sure enough they did. Two slides into my presentation, my heart rate jumped up(I want to estimate at 150) and I started getting lightheaded. I didn’t want to pass out during my presentation, so I had to speed it up to avoid the embarrassment. Luckily there were no unfortunate events. After my presentation, I got an email response from one of my doctors whom I asked about finding an autonomic disease specialist in LA. He had no adequate suggestions, but I currently have a referral written and appointment pending to see a doctor at Stanford’s Autonomic Disorders Program, six hours away from Los Angeles. These seems like my only option.
I pushed through the symptoms during the remaining class time and drove home at around 6pm. As soon as I got home, I microwaved my dinner. While it was in the microwave, I filled my Brita pitcher so that I would have water to stay hydrated for tonight. As I was transferring the pitcher from the sink to the refrigerator, I spilled water all over the floor. I went to bend over to clean it up with a paper towel and while I was bent over, I realized my mistake. I knew it was going to be trouble when I stood up. My assumptions were correct, as soon as I was upright, my heart rate jumped and I grayed out. A couple seconds later, I went about my business of eating and finishing a presentation for class tomorrow. I went to throw my dirty plate in the full trash can; it was time to take out the trash. I dread taking the trash out because of the flight of stairs that connect my apartment floor to the garage where the dumpster is located. Stairs along with any type of exercise make me extremely short of breath, have an exaggerated increase in heart rate and extreme fatigue. That on top of my sore foot/ankle that I have been walking on all day and the peak in fever again due to the activity, are recipes for disaster. Again my assumptions were correct and the symptoms came. After taking out the trash, I sat on the sofa and completed some more homework/watched YouTube videos for a few hours. At 8pm, it was time to take my meds again but I knew I was only going to be awake for a few hours more since I was so exhausted. Unfortunately, I cannot take my meds less than 3 hours before I lay down, or I have awful symptoms. I had to push through the symptoms yet again, until it was time for bed. Although I had almost no energy, I realized I had to go to the grocery store for bread because I hadn’t felt well enough in the last few days to do so. I drove a few blocks to the grocery store, picked up a few items and went to check out. Standing in line for the three minutes that I did was almost unbearable. I was almost at the point of sitting on the grocery store floor, when it was my turn and I could leave. I went home to do homework for the rest of the night. I cannot wait until I get my port back so that I can stick myself in the chest with a needle every other night to receive IV fluids in the comfort of my own home. As awful as it sounds, it is what keeps me functional and less miserable. It will also keep me from painfully taking trips to the ER(hopefully) every week and the doctors themselves getting frustrated because they don’t know how to make me better.
I completed some more homework and started to get ready for bed. I went to take a shower, probably the most frustrating part of my day. I cannot stand long enough to take a shower but I also cannot sit in a hot bathtub, both lead to an increase in symptoms. My solution(not a very good one), is to sit in the bathtub with the shower running, while I bathe. This solution has it’s own set of problems, because going from sitting to standing after the shower leads to dizziness, lightheadedness, rapid heart rate and graying out. I am like an old lady who needs a shower seat (haha). After the shower, I brushed my teeth(with the same set of issues that I had in the morning) and got in bed, watching Netflix until I fell asleep.
At the end of the day, I am thankful that this was a “good day”, where I was not extremely symptomatic. There are some days where I cannot even get out of bed, let alone microwave food, to go to class, etc. Either way, this is just a small glimpse into my days. This is the stuff that I keep hidden. Most people don’t know about the consistency and persistent nature of my symptoms. I have to take every day, one day at a time. That is the only way to deal with this. I have to adapt. I have to strategize. I have to keep on living living on.