[Image shows three spoons on a laptop background. Overlaid is clipart of torn white notebook paper with a red paper clip. On the paper in black text reads “My October Update: College and Health” with an orange leaf and at the bottom reads “Thee Crohnie Grace”]
The last time I posted was to bring awareness to Dysautonomia, since then I had my home infusion for the first time with Entyvio, saw a doctor about having difficulty swallowing, scheduled an ultrasound of my throat, saw an electrophysiologist and have to get a tilt table test to confirm what my cardiologist and electrophysiologist are almost certain is POTS, all while trying to balance my 5 college classes.
[Image shows me on the couch with a green and brown blanket, I’m in a maroon sweatshirt with my port accessed, wearing my glasses.]
It was a bit of a hassle, one nurse showed up on Friday just to tell me she couldn’t do my infusion because I’m not homebound. Despite them calling a week earlier to tell me this already, they still showed up to essential waste my time. I was so upset. I was anxious enough because I had never had it done at home, and this nurse kept trying to reason with me and apologize. And I understood that she was sorry, but honestly it just annoyed me more.
Luckily we were able to get in contact with a different home health company who sent someone on Saturday so my medicine wasn’t put off another week, since it was already late. She was really nice and helpful and showed me how I could feel my port better since it was really deep, and she mentioned it still felt tilted but not abnormally so.
I tried to get my mom to watch The Little Prince during my infusion but she only half paid attention. It went by slower than normal because they didn’t send a pump so we just had to let gravity do it’s thing.
Once the infusion was done, she drew up some labs and off she went.
Shortly after, I began to have pain when swallowing. With all the changes in weather I assumed it was just a cold, or possibly tonsillitis since I had an issue with that a few weeks back. I ignored it and tried sipping on some hot tea, tried gargling some salt water, all the home remedies on could think of.
After two days of not being able to swallow my own saliva without pain, I went to QuickCare, where they gave me some heavy antibiotics and told me it was pharyngitis. I said sure and started taking the antibiotics and just hoped it would go away soon.
In the meantime I studied my butt off for my biology midterm which would be the deciding factor on whether or not I would be dropping the class.
Half way through the week I got my lab results. My white blood count was normal, I was anemic, and my lymphocytes and eosinophils were high. So that meant I didn’t have an infection because my white blood count would have been up. So with that I called my primary doctor and scheduled an appointment thinking it could be an allergic reaction (which my grandma and biology teacher still believe it could be).
So I went to see my doctor, she reviewed my labs and insisted if I was having an allergic reaction to the Entyvio that the benadryl I take every day for other allergies would have been helping. So she looked in my throat, she said it didn’t look red at all. So she began to feel around on my neck, she pushed in one spot and I noted that it specifically hurt in that one area when she pressed which was much lower down on my throat. She told me that since the neck has a lot of muscles she could only feel about 1/4 of the thyroid but thought she might have felt a knot or something, so she ordered a throat ultrasound to better examine my thyroid.
On top of that I had mentioned I was throwing up bile and having a sharp pain in the upper right side of my abdomen. I figure when I go to my doctor might as well get everything taken care of while I’m there so I don’t have to come back later. She felt around, and said she’d have them go ahead and do a gallbladder ultrasound while they were at it for me.
And with that I had to wait and deal with the pain when swallowing. I don’t go for my ultrasound until the 7th so gonna have to deal with it a while longer which sucks but it made me realize just how quickly I adjust to pain, like it still hurts to swallow but if I’m not focusing on it, I almost forget about it, it’s slowly becoming a new normal for me.
In the meantime I did other things like college and hanging out with my family!
[Image shows my grandma squinting, she has long brown hair and is in a red tanktop, me in the middle with a dark green dress and brown sweater, my mom next to me with her hair in a braid, sunglasses on her head in a grey short sleeved sweater and above us is my sister Shelby smiling and looking like a super model.]
My family and I went out to a local farm and did a hay ride that didn’t have hay, fed goats, etc. I carved pumpkins with my dad and Sara (his fiance). And I binge watched a lot of Grey’s Anatomy with my grandma.
What time I didn’t spend with family was either spent studying, at the college, or at Amtgard or D&D the two things I do a week with friends, because I’m a geek.
[Image shows me in a brown and cream medieval dress with a dark brown wool cloak with my arm extended looking up with closed eyes, I have a brown lipstick on and have an opalite headband like a circlet on.]
I passed my biology test, finished all my assignments for the week and had been surviving college, and squeezing my doctor appointments in early in the morning before my classes.
I saw my electrophysiologist Thursday, the only day he comes in to town for local appointments. I was really anxious, despite the cardiologist saying he was positive I had Postural Orthostatic Tachycardia Syndrome, he couldn’t do anything and thought an electrophysiologist could, but I was afraid the electrophysiologist would write it off as issues with my Crohn’s as so many doctors in the past have.
So many of my issues for so many years had been wrote off because of Crohn’s. If it weren’t for friends telling me I need to talk to my doctors about other possibilities I never would have learned about Gastroparesis, or EDS.
But the electrophysiologist was super nice, very sociable, and agreed with the cardiologist and said he was almost positive he was right, but he was going to confirm via a Tilt Table Test, he said he got plenty of information from my heart monitor I had to wear for a month, but that it was the formal way to confirm diagnosis.
So with that he told me to continue my Cardevilol for now while he looked into some medication that might be better for me. And scheduled the tilt table.
[Image shows me sitting by the bathtub in a “Team Dysautonomia” tank top with my thin glasses on and a “meh” expression.]
Overall it’s been a crazy couple weeks, but tomorrow is Trick or Treat and I’m gonna dress up and pass out candy with my dad, Sara, and Chris. And Monday will be my college support group’s first official meeting! A lot still to come as my doctors want to try to redo my botox injections and pyloric dilation to try to get me off the NJ tube since it definitely doesn’t help my throat. In the meantime I’m hanging in there and smiling the whole way through. Life is good and I am happy. 🙂