THE REMICADE DIARIES: PART 2
Things have been crazy this past week! And I can't wait to tell you all about it.....
So first off, it was the week before my Remicade infusion so I was not feeling so hot. On Monday we were scheduled to FINALLY get our AC replaced in our house after three excruciating weeks of waiting. I came home from work a bit early to meet the repair technician and was greeted by two completely destroyed TV remotes all over our bed.
My two little troublemakers ATE, literally ATE TWO REMOTES. This was so ridiculous because we've been leaving them out of the crate for almost a month now with no issues. Luckily, they didn't eat the batteries so it wasn't as bad as I had originally thought but I did end up spending six hours between the regular vet and the vet ER with Rhaegar who was the main culprit. After a pretty penny spent on getting him back to normal, I am happy to say him and Charleston are okay and healthy but they did lose their privilege of roaming free while we are at work.
Other good news, we did finally get our AC replaced thanks to my dad and stepmom coming through and helping out with that while I was at the vet all afternoon. We have a cool new Nest thermostat and a completely new AC system that should last us for a long, long time (or at least it better).
Needless to say, we were pretty exhausted by time Fourth of July rolled around so we kept things low key and had family dinner at my parent's house which was relaxing and a great opportunity to catch up with them.
Other than that I have been keeping things superrrrrr chill this week in preparation for my Remicade appointment yesterday. I wanted to give you all an update on that as well. This was my fourth treatment and I was hoping to get some more answers after my inconclusive hospital visit a few weeks ago. Unfortunately, there isn't much that can be done differently. I am off of the steroids because they cause some major sleeping issues for me and I started two new antacids which I haven't tried before so hopefully I will see a difference with those. My doctor also moved up my Remicade to be only 7 weeks apart instead of 8 weeks which will hopefully help me avoid that hardcore crash during that last week. Have any of you guys seen luck with changing the schedule around a bit?
Overall, I think the Remicade has been a lot better for me and more effective than the Cimzia but I still am not back to my best self. I think with Remicade the times that I feel well I feel a lot better than usual but the times when I don't feel well are the lowest of lows. Sometimes I don't know what is better: to feel really high and really low or to just feel low grade shitty all the time? Only time will tell if this is going to be the long term solution to my case of Crohn's.
I also am supposed to go BACK onto the Keto diet which I was originally on and then off because of the liquid diet/hospital situation and now I guess it is back on. I am definitely going to have to get things back in check over these next two weeks before I leave for vacation because the last thing I want to do is spend my entire time in Disney being sick.
I've been doing a ton of research about the different restaurants that Matt and I have booked for our trip and lucky for me, Disney is incredibly accommodating of dietary restrictions. I've seen some blogs about the different options that they offer as well, which has been super helpful. I am going to try and document what I am eating while I am there and share the different options that are offered in hopes of helping other people who have dietary restrictions and are trying to enjoy Disney World as well.
I seem to get a lot of positive feedback on my travel posts so I will make sure to document everything that I am doing with packing, eating, preparing, researching, all of that good stuff. So be on the lookout for that!
I will be spending the rest of this weekend while I am feeling under the weather from my Remicade, creating some new content and responding to any emails that I have gotten from you guys! There are some pretty exciting things that I have in the works and some collaborations that I can't wait to share with you all. Just stay tuned! Now that I should be feeling better in a few days we are back in business.
Something that I don't think I've ever addressed is what the weekend after Remicade actually looks like. I think people assume it is a lot of stomach issues that make someone sick after getting the infusion. It makes sense to think that because that is usually the case but this version of feeling under the weather is a totally different breed. Your joints ache, it is impossible to get comfortable, and it feels like you are running a fever constantly. I feel like I can never drink enough water to feel not dehydrated and I develop a cause of perpetual sore throat. Usually the first night I fall asleep decently early but wake up in the middle of the night with aches and pains that I can't get rid of. By time I get back to sleep it is usually on and off with some really strange dreams which aren't a proven side effect but I SWEAR I dream the weirdest shit after Remicade days. I end up sleeping (or at least laying in bed) until at least noon which sounds like it would be nice but not when you are insanely uncomfortable. After being up for 3-4 hours just sitting on my sofa I start to crash again and have to retreat to bed or curl up with a blanket and Netflix. I usually like to read when I don't feel well but my eyes literally ache for a few days after Remicade so I can only read in small segments of time. I am irritable and cranky and my skin literally hurts to touch. Getting Remicade is basically like having the flu and not being able to do anything about it.
I know to someone who has never experienced this it could potentially sound over dramatic. Well it isn't. It is 100% truth right here.
I personally try and make the best of it by making Remicade weekends special for Matt and I where we rent movies, play board games, and spend hours snuggling with the dogs. It is an excuse to do nothing all weekend which isn't horrible. For the hours when I feel like a functioning human I can be very productive with blog stuff because no one is messing with me!
As always, I am don't share all of this to have people feel bad for what is happening in my treatment, it could be SO much worse, so feel bad for someone who has it a lot worse. I am honest so that if you are going down the path of Remicade you know what to expect. I am honest so that if you are the mom, dad, boyfriend, girlfriend, brother, sister, best friend, coworker, boss, or in anyway in relation to someone who is going through Remicade, you know what that person is going through and maybe you go a little easier on them during the weeks leading up to and following their treatment. So share, share, share this and hopefully the compassion will grow.
I hope you are having a safe and relaxing weekend and I will have another post up for you guys ASAP!
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Mental health advocate.
Sharing my raw and real journey through motherhood and navigating Crohn’s Disease. CrohnicallyBlonde is a place where I serve up my unfiltered commentary on chronic illness, mental health, pregnancy, and motherhood alongside lighter lifestyle content like beauty product reviews, travel tips, and book recommendations. My hope is that by authentically sharing my story I can help others going through similar situations not feel so alone and maybe even laugh along with me.
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