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.”