Entyvio: Dose 5

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Well this one sure snuck up on me! I took a personal day Monday for the first time in my life, so my schedule was already out of whack. But when I got my reminder call on Monday night about an 11:30a appointment the next day, I thought it was for my annual wellness check we have to do at work (turns out that is on Thursday). Once I figured it out, I was a little frantic, but didn’t want to change the schedule that was going so well with Entyvio. So off I went!

7c4c664e-0a66-4550-8117-fdfd820eb8dcI came to the appointment pretty well equipped. My cupping and acupuncture appointments had me feeling fresh and on my way back to normal. What better way to derail that than an Entyvio dose right? Just kidding. But I was happy I was feeling better, faster, stronger. The appointment actually went really quick, probably because I wasn’t anticipating it. I almost always work from home or take the day off after Entyvio. Tuesday, I felt good enough to head home and continue working. About two hours after I got back, I could feel myself starting to fade (4:30p), but hey, I take this as a BIG win. I am usually in bed right as soon as I get home.

Another reason I didn’t go back to the office was to keep my stress level low. My office isn’t incredibly stressful or anything, but just being there and having to interact with coworkers and clients while I am not on my ‘A game’ is really difficult for me. It is partly pride and partly embarrassment that keeps me from sharing some things about my condition with coworkers. I would love to say that I proudly embrace every part of having this disease and wear it without self-doubt, but sometimes that’s not the case.

Working with a chronic illness can be difficult, and it’s a topic I want to touch on again. Throughout college, law school, and my short professional career so far, I have had certain people pay particular attention to my schedule and habits, always to my dismay. These people have commented that I’m out of the classroom or office quite a bit, they ask where I am going, why I eat certain things, and most commonly, how it seems to them I don’t eat much (even when I am in a prednisone stint and clearly do not miss a meal). Yesterday, I sat through my lunch hour having this medication pumped into me, which greatly impacts my life, and I just didn’t have the energy to return to the office and explain that to everyone.

I don’t think anyone is trying to be malicious, but I guess they are curious as to why I am in and out at times. I know most people don’t think about it, but it makes me uncomfortable, especially when it has been brought up in a bigger setting and I get called out about what I eat, how they think I don’t eat, just joking mention me not eating much at school events or work outings, or how I always leave early, presuming that I don’t have interest in the team. I truly wish it were different. Sometimes I just brush it off as nothing and sometimes I am more sensitive to it, so part of that is on me. The point of this being – if you are someone who doesn’t think this is a big deal or wants to point someone out, just don’t. It really shouldn’t be a big deal what or how either of us consumes food. I am just trying to get through the day, hoping for it to be a decent one.fdc94f62-6c27-4ecf-9a66-ffc7c61aaf10

Back to Side Effects …. That night, I had a mild headache that was increased by my lack of hydration. I made a nutrient dense dinner, a version of which you will see next week! And by 7:30p I decided it was time to wrap up the night and get in bed. I once again felt like I was a few days into fighting the flu, with an overall sense of body exhaustion. I dozed in and out, finally falling asleep around 9:45 and sleeping until 6:30 this morning, which was good. When I woke up today, it felt like I had 5 too many glasses of wine. This feeling faded throughout the day and I am feeling more normal now, but know that continuing to rest this week will be the best thing for my health and happiness.

After looking at the first few Entyvio posts, I am pretty encouraged that the side effects and impact on my body is getting less severe. That is all I’ve got for now!

See you again next year, Entyvio.

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2 thoughts on “Entyvio: Dose 5

  1. My boyfriend was hospitalized for two weeks over the summer for his UC, which in itself was awful for him. But the medication that he was given and has been on since has had such terrible side effects. He was shaking uncontrollably and got so lightheaded that he fell and injured his leg. He spent weeks on crutches and ia now in physical therapy because of it. Thankfully they are calming down a bit now, but his doctors have basically told him he needs to take the meds every day for the rest of his life. I’m interested in this medication, and wondering if it is something that might benefit him.

    And on the note of acupuncture, it sooo helps him. I work in a clinic and they treat us for free which has been such a blessing. He always feels better when he goes, but mostly refuses to because he hates the needles. I’m hoping to get him some cupping as well, but we’ll see if I can talk him into it!

    1. Krystall, I am so sorry to hear that. It is both overwhelming and scary being hospitalized. I once passed out and hit my head, got 6 stitches in my chin and broke 4 teeth. We never really determined why, whether it was stress or medication. I have struggled with many of the Crohn’s/UC medications over the past decade, and have gone through periods where I don’t take anything or where I have to take 15 pills a day. I hope it gets better for him! If it doesn’t there are always alternatives for him to try, you just have to find the right doctor who understands.

      As far as biologics, I have been on Remicade, Humira and Cimzia and had terrible side effects. While Entyvio has some rough days after treatment, it has helped a ton. Doctors have also told me that they have had the best response in UC patients, so it is worth checking out! I try to do a lot holistically to balance it, and I think it is worth it. Acupuncture has been so great for me. It helps me with nausea, because I just never feel the need to eat. Cupping is way less intense than I expected! If you guys want to chat more about it, let me know. Thanks so much for reaching out!

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