Let's talk about INFUSION DAY... The day that every person with IBD looks forward to and dreads at the same time. Some times you feel better and other's you feel worse. Despite the fatigue that comes each time you know you need to sit in that chair down in the basement of your local Kaiser, in the infusion center.
Last time I personally went to grt infused (with entyvio), was 2 days ago (as I am writing this), and it was not only one of the toughest infusions Ive received, the energy all around the place was off that day. I was supposed to be infused at 2pm, I even got there early, and I wasn't even seen till 2:30pm, and didn't receive my infusion until 3:30pm. I waa given the nurse that does not understand me and apparently she doesn't really read charts. She used a regular size needle on my tiny little veins twice and it didn't work (when it says on my chart use a butterfly needle due to small veins), then she finally listened to me and used a butterfly needle (it work immediately)... However she had already pumped liquid into my arm outside of my vein in my left arm and it was hurting so bad. Luckily she didn't do that twice, even though she stuck me 3 times in total.
My stomach / intestines have really been hurting me lately and I have been on pain killers round the clock due to this. However they give me Tylenol when I am infused and I foolishly assumed that they would be able to give me that intravenously. Apparently they are considered a clinic and cannot administer pain meds that way... So I took them orally and WOW the pain I was feeling while bein pumped full of drugs. I cried ans felt dumb for doing so. Whatever!
Then the nurse put the blood pressure cuff on my left arm and all that liquid began to buldge and give me sharp burning pain as my arm began to inflate at the elbow joint. So she took off the cuff and told me to hold pressure on the area to make it go down. So I did so, but wanted to know what had happened to my arm considering the fact I had never had that happen before. Well she would not explain to me any further than : "I put the cuff on your arm and it caused the liquid to pressurize in your arm." Which only fave me more anxiety because she wasn't letting me leave, telling me I was fine, not explaining what waa going wrong with my arm, and being short with me.
So I got up and walked overto the nurses who usually help me and asked them. They were so kind and helpful and apologized for the way I waa treated. They didn't have to do that but it was so sweet.
I pray I never get that nurse again, and that this medication starts to help me soon. My next post is going to be allll about RSO... The true elixir 🙏
Usually infusion day is a peaceful and happy time for me, but this last time was very much the opposite. Sometimes ish happens... What can I say?
