Today was exciting and scary.
a few days ago i got my new glasses and was super excited about it. i had some frustration with the first pair i picked out so i exchanged them and got these super sweet green frames. normally i have a few days of weirdness with my eyes as they adjust to a new prescription but i have now had a weird pressure behind my eyes for the last 4 days along with a terrible headache. i have an appointment with my chiropractor tomorrow morning and hopefully that will relieve some of this pain.
I woke up today feeling kinda sick, but mostly just with a throbbing headache that made me go back to sleep for three more hours. when i finally got out of bed at 9 i thought maybe i could crack my own neck by stretching and breathing but after twenty minutes of it, i gave up. i showered and got dressed for my very first appointment at UCLA. I ate some gluten free pancakes with blueberries, strawberries, maple syrup, and whipped cream. It didn’t sit well. In fact, shortly after eating I found myself running to the bathroom to poop. I was having some serious abdominal pain but I refused to acknowledge it. It finally got bad enough that I said something out loud to my mom and she said “thats probably a good thing” meaning that the doctor would be able to see how much pain I was in and figure out something to do to help me. I was not feeling up to driving there so she drove my car. We got there and checked in, I filled out my new patient paperwork (the shortest stack of papers I’ve ever had to fill out as a new patient) and waited for the nurse to call me in.
I was weighed, asked a few questions about why I was there, had my blood pressure taken, and temperature taken. I still weigh 127, which is 13 pounds lighter than I did when I was in the hospital the first time. Its a good weight for me, as long as I’m healthy. My blood pressure was on the low side again at, 98/64. Not the lowest its been but still concerning. I waited for the doctor. and his assistant came in to ask about my medical history and all the good stuff. she talked with me for a good while and did a short physical exam, I cringed when she got to my right upper abdomen and waited for the hurt. It came and went. She pushed again, and it came and went. I did a half sit up, she pushed and it didn’t hurt. Thats what should happen if you didn’t know. She left, and we waited for the doctor to come in with her. They eventually came, and talked to me a little bit more about what I can and can’t eat, what makes the pain worse and what makes it better. Jello. I said Jello. thats the only thing that doesn’t make it hurt, and is also the only thing that satisfies my hunger when it comes. He asked me a few questions some of which I had been asked many times before and a few that I had never been asked. Then he dropped a bomb. Angioedema. Its basically random swelling in the face or limbs. which I have had a few times since this all started. Sometimes comes without reason. There were a few other things he mentioned; redoing the capsule study, and doing a deep enteroscopy. But he would only consider doing the latter if the blood tests he ordered come back with any sign of abnormalities. He said with what I have and haven’t been able to eat, I would be malnourished but I didn’t look like it to him. He wasnt convinced so that is one of the tests he ordered. He also asked about a stool test and didn’t seem as surprised as I thought he would be when I said I hadn’t had one. So he ordered that too. My mom had to leave just before the appointment was over so she could catch her flight with matt. (thats a whole different story, a much more exciting story which I will tell at a later date) So I was left to be a big girl and figure out the rest on my own. I waited in the room after they left, and was getting anxious that I heard them wrong so I got up and went to the front desk to ask for a bathroom, the woman directed me back down the hallway I had just come from. When I was coming from the bathroom, back down the hallway, I was a little surprised to see that there was another patient in the room I had been in. So I played it cool and walked back to the front desk and asked “Do I need to check out or am I good to go..?” The same lady that told me where the bathroom was informed me that I needed to wait another 15 minutes in the lobby so the doctors assistant could enter all the tests to be done. I waited about 20 and was told to go up one floor to the lab in suite 307 to have my blood drawn and then down to the first floor and out to the next building to suite 145 to get my poop test kit. I made it up to the third floor to get my blood drawn and was kindly told by the technician that there were no labs in the system for me and maybe the doctor forgot submit it. So back upstairs I went, and talked to the bathroom direction lady, to which she said all the tests were in there and she didn’t understand why the nurse couldn’t see them on her end. She called that lab lady and tried to get her to open the right tab and I swear this was taking forever and I was ready to give up and go home. But I kept calm and had a conversation with the guy at the front desk about how this had happened before when I was scheduled for a colonoscopy and showed up for it and no one could find me in the system, and I said. “y’all better figure out what went wrong here because I didn’t do all that prep for nothing” They eventually found it and I had it done. Same goes for the blood work today, the lab lady explained to me when I went back upstairs that there was another patient with the same name and birthdate as myself but with a different account number. whatever lady just take my blood. I eventually made my way to the second building to get my poop kit and was on my way home (after some serious confusion on how to pay for parking). I made it to class a little late, but it was worth it. I was prayed over and went to my car to drive home. I was trying my hardest to not cry. I started to feel overwhelmed with fear of a new diagnosis and what that might mean for my future. I got home and texted my mom that my pain hadn’t gotten any better, and was actually felling worse. She was still on airplane mode. I broke down crying. I composed myself and went upstairs to get some pain meds. I just want to sleep this away. I took the meds and threw up a few minutes later. the pill. the carrots. the peppers. the crackers. the hummus. ugh. I broke down crying again, Lord I know everything will be ok but I’m so scared at this moment and I just need a hug. I fell to my knees and wept. I had worship music on which didn’t seem to help. my sister texted me asking how the appointment went and I asked if I could call. She was at dinner and would call when she was done. I told her I didn’t know how long I would be awake, but that I was falling apart at that moment. She called me and calmed me dow, we cried a little together and just talked like sisters do.
Sometimes I get so frustrated and overwhelmed I just want to pound my head against a wall. or the toilet seat, if I’m throwing up. that has happened before. I have done both.
I still need a hug.