I am so incredibly exhausted right now and my pain is spiralling out of control I had my Remicade Infusion today and literally took everything that was left inside me (which wasn't much)-- after a long crash all evening in my bed, I have woken up to feel even worse and now I feel ulcers deep inside my GI tract breaking open and causing unpleasant mucous to gush out of me! Usually I can handle this emotionally because I know to expect it after every infusion and then usually things get better quickly again (But when I say "better", it still is far from good.. sigh). But today was a bit different, today really tested me, and in the end it drained me more than it was worth letting things get to me because now I'm just paying for it--
At my Remicade clinic, there aren't any other Behcet's patients, only people with Chron's and RA and some other types of arthritis-- so anyways, this lady come hobbling into the room (which is extremely tiny and crowded with two bigy lazy-boy recliners and the nurse's desk), basically kicks my mom out of the other chair and sits down, pulls up a tray cart to her chair and pulls out a big smelly smokie dog, chips, fruit, pop, all kinds of stuff, and starts talking away to my nurse. My nurse was busy trying to get everything ready for my infusion and was asking my mom and I how things have been lately and so on-- all while this lady sat there nosing in on my business and kept cutting in yapping about her own issues. I was already very irritated and felt sick, and the smell of her food made me feel like vomiting.
This lady keeps holding up my nurse by yapping to her and distracting her-- and all of a sudden she looks at this lady and says, "um so why are you?"-- well I guess this lady was another Remicade patient and she claimed she had an infusion appt. today, but my nurse said it was for next Thursday.
She kept arguing with my nurse, and she told her that she would check into things but she was sure her appt. wasn't for a week. This lady was acting like a little "know-it-all" and even had the gull to ask my nurse if she needed help rolling my vials of the drug (which reconstituates the drug with saline water.. she even used that exact word to sound all smart).. I was thinking "keep your dirty hands off my medicine!" and my mom was thinking the exact same thing!
My nurse had to go find out about this lady's appt. (I've already been sitting there hooked up to i.v. for almost an hour already but with no med going through) and she was gone for a long time, comes back and tells the lady her appt. was definitely not until next week and shows her in the appt. book-- but of course she had to argue some more. So my nurse gave-in and said she would do her infusion today (which meant that she either took someone else's meds or the extra stock they have), and all I was thinking was "my goodeness, why can't she just leave already!" She starts yapping away to my mom and I about all her problems and meds, and was asking about my problems and my meds and stuff, and what really set me off was when she said "oh yea, I know all about Behcet's...(saying it completely wrong)... well that's not too bad" and starts going in about all her problems. It turned out that she didn't even have any autoimmune disease, but had something wrong with her spine and had steroid-induced adrenal insufficiency.. but she tried to make it seem like she was so worse off then me.. which really, I'm not there to make others think I'm sicker than them, I'm there to try to do something for myself to feel better because I just want to feel better.
I also have Addison's Disease (autoimmune attack to my adrenal glands which results in loss of function and low cortisol levels).. and she starts asking about my steroid, and starts telling me that I'm on the wrong med and dose, etc. and that she's on the proper ones (because of her steroid-induced problem), and starts saying to me, "well I can tell you're on prednisone because of you were on the right drug like me than your face wouldn't be as fat and round as it is."-- that was just uncalled for, and this lady is like 40-something and I'm 25. Then she starts saying that I must be lying about how sick I am because I'm on "such a low-dose of steroid" and she said "well I'm surprised if you were as sick as you are, then why isn't your endocronolgist actually treating you with the right dose?" I just sat there minding my own business and biting my tongue. At this point my mom had been piushed out the door and texted me saying she was going to go down to the cafeteria because she couldn't stand another minute with this lady.
As soon as my mom leaves, this lady sits up in her chair and starts yelling at me about how sick and weak her body is and how obviously her body is under so much more stress than mind because she gets more steroid than me and so on-- and she also she said she self-medicates with injecting steroid at home (which by the way, is obviously illegal drugs bought off the internet, because here the endocronoligsts do not treat adrenal insufficiency as an out-patient with needles), and then she says to me "well my body is under so much more stress than yours and my cortisol depletes quickly because I'm in high intense pain all the time!"-- and she was shouting this at me... well this was it, this was my boiling point...
I just looked at her and kindly but sternly said to her "please don't ever judge some one else's pain level because you don't know... I am severe pain all the time as well."-- I couldn't believe she would say something like that.. a 40-yr old woman yelling at a 25 yr old girl trying to win "who is worse off"-- It doesn't matter who is worse off because everybody has something and to them its real and it can be a big deal-- and what she didn't realize is that I am there having an infusion and steroid and gravol put into my i.v. because I'm very sick, in a lot of pain, and am tired of having to live my young life in bed and want to keep getting the meds in hopes that they will one day help me feel better. She was accusing me of basically just being there for fun because no one else could ever be suffering in pain. She was yelling at me about how I don't know pain because I don't have the exact same spinal pain as her (and she used some big fancy medical term for her spinal pain).. and I just looked at her and said, "no I don't know what your pain is like, but I do suffer in bad pain, I have Behcet's pain, and you don't know what that is like."-- oh my, that just set her off going even worse, I could barely even understand all that she said because she was scrambling and yelling so loud.. but I do remember her saying that I was judging her and I was the one telling her that she doesn't know what pain is like, and she also yelled something about "stop acting like you're so much worse off than me because you throw that fancy medical name around for your so -called disease! you don't even know what its like to be sick and be put through sh....t (you can fill-in the blank)-- that was it, I couldn't handle it anymore--
My nurse finally said to her to stop it , and I got up and said to my nurse that I couldn't handle anymore of it and went running into the washroom. Luckily they have another small room with two more chairs and there was one open chair in it, and my nurse said she moved my stuff into there and she apologized for what happened.
Even more lucky was the fact that my mom was there right outside the washroom for me, and I just fell in her arms crying. I don't know why I let it bother me so much, but its just really tough to have someone say those things to you.. I'm sure many of you guys can relate!
Anyways, long story-short-- I thought I was done with having to fight with others about being sick, but apparently these people are everywhere. Now that I have calmed down a bit, I just try to look at it as another experience that is going to help strengthen me as a person. These bad experiences are just as important part of our life journeys as the good experiences are.
Sorry for my long ramble, I just had to blow some steam. thanks for whoever reads this!