Remicade Day #1 - It Could Be Worse Blog
This week's excitement comes after a festive Thanksgiving. Spending some much needed time with a loving family is just what the heart and mind demand.
This past weekend we had intended to go see a movie. I even got up and did my face and hair, but I could not seem to leave my office (read: bathroom). I was having such bad pains and issues that I bailed on our day-date and we spent the afternoon on the couch with movies and junk food. It wasn't a bad alternative to the day, and I threw it all up, but still. I hated ruining the day. Or the Crohn's Disease ruining the day. Either way, I feel guilty for it, and I know I shouldn't.
Monday, Philip and I celebrated our wedding anniversary. We have been friends for a decade and married for 4 years now. I finished homework that afternoon and we had a lovely dinner and evening together.
The Sunday before, we exchanged anniversary gifts early, I had given Philip his as soon as they arrived, but he had surprises in store for me that he was too excited to wait any longer. Blue and white China, Fruit Loops, flowers and a heating blanket that's been used almost every day since. He had remembered I had mentioned wanting one FOREVER. I get cold, especially now that I am chronically ill and not getting the nutrients I need, losing weight and having insomnia and other issues, it was a priority on my wish list. Philip definitely won the award for best gifts this year and I feel truly blessed for our love. He's my best friend, my world.
Tuesday we had Skyline for dinner. If you are not familiar, it's a combination of Cincinnati chili, noodles, onions, beans, cheese, and LOADS of hot sauce for me. BAD IDEA!! I regretted it instantly but I had to...I hadn't had Skyline or hot sauce since Richard was in town with us, and that was back in June.
We spent Wednesday and Thursday with Philip's wonderful and humorous family, celebrating Thanksgiving and me giving out a few haircuts. (Thank you guys for letting me cut it for you!) even saw a bald eagle on Thanksgiving, a first for me.
We had a true 'Merican holiday, as we even saw a bald eagle on Thanksgiving, a first for me.
We wanted to spend more time, but alas, I had my infusion today, so we wanted to spend the night before relaxing at home. We are the masters of trivia, just so you all know.
Thursday night Philip and I both fell asleep on the couch, and that's where we stayed until this morning. I feel like I didn't get any decent sleep, I was up a few times in the night, but I was too wide awake with nervousness and excitement to worry about my bad sleep habits. I woke up anxious and almost rushing. I got up and got ready, and I made sure my face was on point for my first infusion for my Crohn's Disease. Ha!
As for the Crohn's disease, I have had some bleeding for the past 2 weeks, with my bowels feeling worse and my body feeling tired. But luckily, I started the Remicade TODAY. I am writing this as I am sitting in my infusion, actually. So far, so good. Thank you to those checking in!
We got the the VA surprisingly early this morning, one of the few times I have been on time, got checked in, and, the nurses in the infusion room got my IV started, with Hydrocortisone to help curb any side effects. After 30 minutes of the Hydrocortisone, that is when we could begin the fun and start the Remicade drip. Lucky me, they don't taste anything like the saline does.
The nurse had a tough time getting the needle in my arm, which was shocking. Instead of in my elbow crease or the top of the hand, the IV was placed mid arm, on top, so I had FULL range of movement with my arms. If you get a lot of IV's or blood drawn, you know this is such a major help. It allowed me to write the majority of this blog post at the hospital.
We began the Remicade dose low, with the medication dosage getting higher every 15 minutes until I get 250ml for the rest of the infusion. My blood pressure and pulse got checked every 15 minutes, but the best part about the infusion was the heated vibrating recliner that I got to call home for a few hours. I need a set of them at my house! Even Philip got to nap in one beside me, contrary to the 'rule' that he couldn't stay with me.
I can say that the infusion wasn't as bad as I expected. I had read about infusions as much as I could in the past few months, knowing eventually it would lead to this, so I went in with knowledge of good and bad outcomes from the medication, like going into remission or shock.
Yay for me, I finished the Remicade with no problems, thankful to have Wi-Fi and service so that Lisa and my mom, and all of my followers could keep me company (via messaging) during Philip's slumber. I had in my headphones with Pandora set to my favorite station, the chair heater on and my phone plugged in, so I was as good as I could be given the situation.
I do have to say my followers on Instagram have to be some of the best people I have come to know. I have found a HUGE Crohnie support system that definitely keeps me motivated and looking forward. Thank you guys.
The nurses I had were more than kind, and we scheduled for another dose in 2 weeks, and then 4 weeks after that. Then, yearly, I will only have to look at around 6 infusions a year, unless we do them more frequently. That won't be too terrible.
In all, it took around 4+ hours at the VA, something we expected beforehand. AND the silver lining of the day? I kept my lunch down AND I got another medical bracelet. BOOM! 2 for the price of one today!
We went to the store and headed home after discharge, and now I sit here editing this blog. Yes, I'm in my heated blanket. :)
Next week, I'll see my therapist at Mental Health, and I will be FINISHED with my Communications degree and working towards the Journalism certificate. I am beyond ecstatic to be getting closer and closer to graduation. Another class done with 6 to go?!
I know it has been a short blog week and this post comes later than I planned, but I do hope everyone enjoyed their Thanksgiving holiday, their off time, and that you enjoy the weekend to come, because, It Could Be Worse.
We go into this next week hopeful and thankful because It Could Be Worse.
Thank you for reading, and for keeping up with My Crohn’s Journey.
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And as always, any information you’d like to offer up about Remicade infusions or any of my struggles and issues, I have open ears and I’ll happily take any tips you have!
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