Despite the mix up with/lack of humira today, I had a good Valentine’s day. My wonderful fiance took me out to TGIFriday’s for dinner and I was able to not only eat all my main meal, but also a strawberry sundae after. Feeling quite full but not bloated. All in all, a good day.

Humira update #2

So, the delivery company have messed up; The hospital arranged for my humira to be delivered weeks ago but the only company in the UK that deals with delivering medication to patient’s homes has messed up somehow (They don’t even have me on their system!). I am now having to wait to see when the hospital can arrange for me to go in as an outpatient to have my next two loading doses at the hospital rather than at home. Very frustrated but at least I know what’s happened and don’t feel like I’ve been forgotten.

Humira update

So, I called the hospital to find out if there was a specific time my humira is meant to be delivered today. They said I should have been contacted by the health care company that deals with the deliveries of medication like humira but when I said I haven’t received any paperwork or phone calls, they said they’d look into it for me. I’m a little concerned that someone’s messed up and I won’t get my injections today. This wouldn’t be a problem if I wasn’t going to be at work for the rest of the week. Now, I’m just waiting for a call from either the hospital or the delivery company. I’m trying to stay positive; I don’t need another anxiety attack.

My mom has done something incredible.

dontnuketheducks:

I want to tell you guys a story.

A few years ago, I came out to my mom the morning after my senior prom. She was surprised, then quiet, then asked what my real orientation was. I said, “I have no idea, but I like this one girl.” She was a little confused, but she kissed me and said, “As long as she makes you happy.” For the next few weeks, she asked a lot of questions: when did I realize? What was my new girlfriend’s orientation? What was the word for this or that? I WAS happy, right?

Fast forward about two years. My mom sits me down and tells me that she needs my help with her next book. She’s been writing middle-grade girls’ books (like, 9-14 range) since I was eight, and she says she has an idea that she really, really wants to get right. It follows the plot of Romeo and Juliet, she says, and the main character is a twelve-year-old girl realizing she has a crush on another girl when they put on the play for English class.

Fast forward another year to now. STAR-CROSSED is about to come out, and it is absolutely amazing.

image

My mom has poured her heart and soul into making sure this is a positive thing for kids to read.

I’ve been reading and editing and helping with this book since its first draft and I’ve been, metaphorically and sometimes literally bouncing up and down on my heels, waiting to be able to tell people about it. It’s beyond sweet, and there’s a ton of Shakespeare and humor and goofy preteen drama and twelve-year-old girls flirting and Star Wars jokes and a glossary of Shakespearean insults in the back (yes, really), and it’s just so fun and positive and smart and I want to show it to every kid I know.

This book is for LGBT kids, written by a mom who has asked questions and done her research and tried as hard as she possibly could to make her own queer kid feel safe and loved and valid, and it REALLY shows. Mattie (the cutie on the left) and Gemma (the cutie on the right) are given space to learn about themselves, and ultimately they don’t have to figure themselves out right away or come out to everyone at once or choose a label. They’re kids. It’s okay to still be figuring things out. It’s okay. 

Fun facts: 

  • My mom said from the beginning she wanted both girls on the cover to make it clear what the book was about; then when they got the final artwork and Mattie’s hair was short, my mom wrote back and asked the artist to do the hair over to make it as obvious as possible that Mattie is a girl. 
  • When a few people started buzzing about Mattie being the youngest bisexual protagonist they’ve seen, she went back and changed passages to confirm that Mattie likes boys and girls. 
  • When I asked for a happier and less ambiguous ending scene, she set Mattie and Gemma up on a frigging date. 

It comes out on March 14, 2017. Please join me in GETTING HYPE FOR STAR-CROSSED ❤

Not IBD-related, but something I feel need boosting; we need more books like this available to kids so they know it’s normal and ok for boys to like boys and girls to like girls.

I have my next humira doses tomorrow but I have no idea when the nurse is meant to come round. I’m guessing they’ll arrive anytime after 8am but I really have no idea. I’m getting up early anyway, just in case, so I really hope I get a decent amount of sleep tonight.

schrodingerspanda:

prochoice-chick:

theadventurepants:

pir8grl:

doodleloser:

dredsina:

I have no concept of the pain scale, like…I just realized that last week I said I was in especially awful hip pain and when my pt asked to rate it I said “3”. And then this week I said I felt a lot better than last week and when she asked me to rate it I said “3”. I really don’t know what the numbers are supposed to be. I know it’s supposed to be out of ten but like. I think I rate the pain by what time of the day it is. Like “i will rate the pain I’m in at a 5 at the end of the day, so compared to what my pain level will be later, what I’m feeling right now is a 3.” I also think i rate in overall pain rather than specific pain? Like, systemically I’m at a five. Some parts will be worse or better but i just rate it all at five because that’s the average

Here’s a pain scale that actually makes sense.

MUCH better than those stupid smile faces.

This is amazingly helpful.

Please show this to children. I could have used this when I was in the hospital with mastoiditis.

Like your asking a child to tell you what level of pain they are in?? All I know if I want to scream and go to sleep

My life exists on the border between 5 and 6. Sometimes it’s worse, but rarely ever better than a 5. A 4 is a good day.

I always thought the “rate your pain” thing was a bit pointless because my 5 could be someone else’s 7, but seeing it explained like this has made it a lot clearer. Thankfully, my doctors don’t ask me to rate my pain; instead they test how tender my stomach is by pushing on it gently and seeing how I react (ie. If I winced or say it hurt ect.).

snorlax-and-co:

The effects of a dissociative disorder may include:

  • gaps in your memory
  • finding yourself in a strange place without knowing how you got there
  • out-of-body experiences
  • loss of feeling in parts of your body
  • distorted views of your body
  • forgetting important personal information
  • being unable to recognise your image in a mirror
  • a sense of detachment from your emotions
  • the impression of watching a movie of yourself
  • feelings of being unreal
  • internal voices and dialogue
  • feeling detached from the world
  • forgetting appointments
  • feeling that a customary environment is unfamiliar
  • a sense that what is happening is unreal
  • forgetting a talent or learned skill
  • a sense that people you know are strangers
  • a perception of objects changing shape, colour or size
  • feeling you don’t know who you are
  • acting like different people, including child-like behaviour
  • being unsure of the boundaries between yourself and others
  • feeling like a stranger to yourself
  • being confused about your sexuality or gender
  • feeling like there are different people inside you
  • referring to yourself as ‘we’
  • being told by others that you have behaved out of character
  • finding items in your possession that you don’t remember buying or receiving
  • writing in different handwriting
  • having knowledge of a subject you don’t recall studying.

I don’t normally post about my DR but I feel this kinda hits the nail on the head when trying to describe what it can be like.

Source: snorlax-and-co