5.19.2013

My 1st Remicade Infusion

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Hopefully you aren’t sick of my posts or me talking about my disease on this little blog of mine, because well, I have the disease, it affects my daily life, so…I will talk about it! Unfortunately, it is a big deal. Maybe it will be helpful for someone out there ;) Anyways, so I decided on Remicade (infusion) vs. shots (Enbrel or Humira). The infusions are less frequent (every 6-8 weeks- not sure how many weeks apart mine are actually). If I did shots, I would do them every 2 weeks. I probably, over time, would get brave and the shots wouldn’t be a big deal, but what if, they really sucked, and every 2 weeks I was begging Kevin to give me one or my parents (if he was out of town)…or random nurses that I know here. Random, but I actually know quite a few nurses here! I didn’t want to dread that day and have to deal with disposing of the medical waste/sharps, traveling with the shots and keeping them refrigerated, etc. So I decided to go for it! Kevin helped me decide to do so. I was so nervous to just decide to do it. I decided to take advantage of modern medicine since it is out there to help people and it is the only type of medicine that could prevent fusing of my spine (no brainer there). If I get lymphoma cancer or a serious disease from it, well, that really sucks, but I guess I am taking my chances…. So I was told to drink a lot of water the day before to help my veins be lovely to poke for the meds to run in…I think I did ok. Anyone have a hard time just DRINKING? I would much rather eat. I struggle with staying hydrated haha. Side note- I could NEVER be an alcoholic! By the way, I have never tried alcohol haha… Anyways, I went to bed late, also a problem I have…I have a hard time going to bed before midnight which is like 4.5 hours after Ryder has been asleep, lol. So I go to bed and then in one of my dreams was I was at my rheumatology office, was SO delusional, and couldn’t find the infusion room! I remember being lost in the office and out of it. Thank goodness I woke up and I wasn’t all delusional in there. My infusion was at 8:30 am and was supposed to go 20 minutes early, so basically, I woke up dang early. The infusion takes 2 and a half hours so Kevin took Ryder to work because I couldn’t take him there. Ryder’s first tooth literally popped up 2 days prior to this and he had a little cold so he wasn’t in the best mood. I had a feeling he may be crazier than normal for Kevin and he was. The photo above is Ryder chilling in a chair in Kevin’s office! I love my cute boy! I had my first infusion, Tuesday, May 14th, 2013. They say the meds could start working the following day or a couple of months. That is a big variance! Cyndi (who does the infusions and goes to my church) got my meds ready and gave me my IV. She was explaining how there is a thing that goes into my arm that is kind of plastic-y (sorry don’t know the names of IV parts lol) so when you move your arm the needle won’t poke you or something. Basically, I was SO nervous I was getting lightheaded. < It reminded me of when I passed out at a post surgery appointment at an ENT (Ear, Nose, Throat dr.) appointment. Awhile ago, I had sinus surgery and they also fixed a deviated septum. I was at a check up and he was putting something up my nose like I swear, back into my brain haha and it made me feel so weird I passed out. >  Now back to the infusion, basically, I’m glad I didn’t pass out. I’ve never passed out giving blood or getting an IV but it was just weirding me out. I was just so nervous to get these meds because they are hardcore and the strongest drugs for my disease. Basically, after Remicade and the shots, I don’t know what else there is out there. Hopefully LOTS of options in clinical trials?! Anyways, I brought my laptop (in case I wanted to blog, shop, etc.) and an iPad with Kevin’s Bose headphones. I also brought thank you notes and random things to do. Instead, I sat there asking Cyndi lots of questions and worrying about the side affects haha. Also, I brought a Naked drink because they are yummy, oh and chocolate too :) I ended up getting calm at the end and watching a little of What to Expect When You’re Expecting and then it was all over! Basically the meds just dripped into my body and made my arm cold for a couple of hours. Also, you are allowed to go to the bathroom if you wheel your tower of meds into the restroom with you ha! All in all, it wasn’t too bad, but at the end, I started feeling like I was getting a headache but think it may have been mental haha. Afterwards, Kevin, Ryder, and I went out to lunch at Subway. I told him all about it and he said, “Let’s do lunch or dinner after every infusion to make it a good day!” I think that is a splendid idea. It sucks to have a disease and we can make the day special haha. Then I said, “And I will go shopping!!!'” Just kidding, maybe. That would be an awesome post-infusion tradition! So far, I haven’t noticed anything crazy with the drugs but a positive is that I stopped taking Vicadin 2 evenings ago. I didn’t take the pill and didn’t wake up in the middle of the night from pain! It is hard to say if it is the Remicade working (which would be pretty early) or if my flare-up is going down for a bit. I swear, every day it is something new. Last weekend and earlier this week it hurt to breathe (in the front of the rib cage) and my knees got really bad a couple of weeks ago. I think my knees have gradually gotten better and luckily I am breathing better. Now, my lower back/SI joints are achy which is annoying but definitely better than freaking limping. I am ready to hit the gym hard and not ‘take it easy’! So frustrating. Anyways, I get my 2nd infusion not this week but the following. Hopefully by then, the drugs will be working in full effect! Crossing my fingers!

Also- if you are wondering why I Instagram random IV photos or health ones, it isn’t to gross you out. There is a whole arthritis world out there on Instagram lol. Basically, if I hashtag #Remicade or #Enbrel or #Humira I get a lot of good comments and feedback from people who are on it! I’ve also hashtagged my disease #AnkylosingSpondylitis and found people who have it as well. However, there aren’t too many since the disease is pretty rare. I have gotten good info by doing that so just in case you are wondering :)

1 comment:

  1. This will work! You are doing a great job with your little family and managing the disease.

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