Hello beautiful people!
Sorry for the disappearance. If you’ve read my last few posts you know I have not been doing well at all and I kind of took a break from just about everything. I really just was not up to anything, including writing. I’m starting to feel a little bit better on a daily basis where I can now get out of my house for a few hours each day and hopefully start to function like I was before the flare up.
Today I had a really good day. My mom took me to see Waitress on Broadway which I’ve been wanting to see FOREVER. We did a lot of walking around and exploring the city and going shopping and just having fun. It was just overall a great day. I had so much fun and loved having some bonding time with my mom. I think that while I was out and about and having so much fun I just kind of…overdid it. This happens a lot when I have good days because I want to do so much when I feel well enough to do anything. I am currently suffering the consequences. All of the walking around and not really resting or taking breaks really took a toll on my body. I am now throwing up and dizzy and in so much pain. I feel miserable but I had an amazing day and to me that’s almost worth it. I wouldn’t trade the day I had for the world it is just unfortunate that these are the consequences I have to face because of my illnesses. It isn’t fair, other people get to do these things all the time and not feel any consequence whatsoever, but life isn’t fair. I was dealt the short end of the stick. I’ll be okay, I’m just frustrated. At least tonight I get to rest and don’t have anything to do tomorrow.
Friday I start a new job and I am extremely nervous. I am scared that my new boss/coworkers will not be accepting of my illnesses and won’t let me take time off if I need it. I’m hoping that this job works out better than my last. I really could use the money and I feel like if I have a job, I’ll start to feel more like a “normal” person. Who knows. It’s also late at night so I’m getting caught up in my thoughts. I should probably go to bed.
Goodnight beautiful people.
Hello Beautiful People!
This week, my Gastroparesis flare up has gotten any better. I feel like poop and it takes so much energy to even get out of bed. Some people have been really nasty and I just want to bring this really important subject to light:
Invisible Illnesses are very real
The reason that I’m bringing this up is because a few people who I know have decided to discuss my illnesses amongst themselves. They have been saying that my illnesses are “fake” and that I say that I’m sick “for attention”. This is absolutely disgusting. I really wish those people could understand that just because someone does not look “sick” that it doesn’t mean they aren’t. Most of the time if/when I leave the house I’m feeling much better and make sure I look okay. I don’t want to look “sick”, I don’t think anybody wants to look “sick”. These illnesses are not something I would wish upon even my worst enemy. I wouldn’t want anyone else to spend every night throwing up and in pain. I wouldn’t want anyone to seize any time that they felt an overwhelming amount of emotion. Why would anyone make this kind of thing up? I just wish that they would have spent some time with me to see that these things are very real and very scary. Instead I just feel attacked by these people and am really uncomfortable even hearing their names. I feel sad and invalidated. Please understand that invisible illness is a very real thing that affects many people. Never invalidate someone’s illness because you don’t think they look “sick”.
Hello Beautiful People!
For the first time in a while, I had a really good day. I was able to get up this morning and go to work (which I was not able to do yesterday) and then I got to go to a small “party” (really more of a get together) with a few friends. It was a very last-minute thing too, and I am so happy that I got to go. There was a group of 6 of us at my friend’s house and we watched old Disney Channel musicals together and had a sing along. It was really fun and it felt really good to be out and with friends. Disney (the puppy) got to come too and hang out with my friend’s Labradoodle. Disney is a mini Goldendoodle so we had a doodle play date and it was super cute! Tonight was a lot of fun and I never once felt awkward or uncomfortable which is usually what I feel whenever I go out. I really liked everyone that I was with and it was a really fun time. I feel like I’m rambling but I had so much fun and I am in such a great mood and that just never happens. Of course now Disney and I are both extremely exhausted, but in the best way possible. It was 100% worth it and I’ll probably sleep very well for once. Goodnight beautiful people!
So if you read my post from this afternoon you would have seen that I had absolutely no energy, not even enough to take a shower but I still had a huge list of things to do PLUS i had to perform at night. Here’s how that went:
I eventually got enough energy to put myself in the bath to at least get myself clean and smelling good. I popped in one of my favorite bath bombs and sat for about 20 minutes. I still did not have energy to do my hair, which desperately needed washing and blown up, so my mom ended up being really awesome and paid for me to get it washed and blown out professionally. This saved me so much time and energy, and also made me a lot less anxious, it was something that could be crossed of my to do list and also I got to relax for the half hour while the [really nice] woman did hair. After that I had to do my makeup. This, on a regular day, would take about 20 minutes. Today it took me a full hour and 15 minutes. I could barely keep my hands steady, my arms got tired quickly and I needed constant breaks. This is an example of really just having absolutely no “spoons” left. Normally, this task would be super easy for me and would have taken barely any time at all, today it was a huge ordeal. There’s no way to tell the night before if you’re going to have a bad day either, so there was no planning around it. I am thankful to have a wonderful family who all helped out with the rest of my to do list before my performance.My dad helped me get out of bed in the morning and made sure I could walk and would be okay before he left for work. My mom made sure that all of my costumes, medication, and service dog gear was packed and ready to go. My brother fed, walked and exercised my service pup and put her crate in the car for me. Everyone at home worked as a team to make sure I was going to be okay today.
I was still really tired when I had to arrive for the performance (at call time, which for non-theater people means about an hour and a half before the scheduled performance time) but I kept myself energized and hydrated with some Powerade and that actually helped a lot. My friends and boyfriend who are also in the show also checked on me at various points to make sure I was doing well and could keep up. One woman really decided to make me angry though. The advisor of our theater club at school decided to come up to me before I was supposed to perform and tell me that if Disney (my service puppy, who is still in training but can already perform her seizure alert task) made any noise while she was backstage she would not be welcomed back and she (the advisor) would kick Disney out and not let her come to the final two performances. I feel the need to insert here that Disney is well-trained and is absolutely NOT disruptive at all. She used to bark sometimes at rehearsal because people would ignore me telling them not to play with her while she is working, but she has since stopped doing that. Disney also has been my companion during 12 other performances and stayed backstage and was completely quiet. I don’t know what stick was up this lady’s butt, but she was trying to tell me that Disney “couldn’t possibly be doing her job from her crate backstage so she has no reason to be here”. Disney senses my anxiety and my heart levels to alert if I’m going to have a seizure. She can sense these in any part of the room even if she is in a crate. I tried explaining this to the woman, but she rebutted with “no i don’t think that’s how it works” I corrected her but still she finished the conversation with “tonight will be a trial and if she makes one noise she is not welcomed back”. (LANGUAGE WARNING) I am so sorry for this language but this woman was being nothing but a bitch. Once she saw that Disney was behaving she actually went backstage and tried to get her to bark. I was stunned. This entire ordeal happened about 20 minutes before show time. I was so anxious afterwards and spent more energy (that I didn’t even have) fighting with her about my service dog who is legally allowed and required to be there. I had several panic attack which were exhausting and once I calmed down I had to relax and drink a whole bunch of water and Powerade to get myself to the point where I could possibly perform. Tomorrow my brother is coming with me to call time in case I have another issue with this woman and he will let her know that everything she said/did/was planning on doing was illegal.
After this whole mess happened I went on and I performed completely fine. I did a great job and I feel good about it. Unfortunately I am now more exhausted than ever from this whole day so I’m going to go to sleep and hopefully tomorrow will be better energy wise, and hopefully I won’t have to deal with that awful woman. Goodnight beautiful people!
Hey, I’m Katie. I am 20 years old, and my life can be pretty difficult. I live with a series of chronic illnesses (you can read all about them in the “about” section) but, that’s not all I do. I’m a dancer, I’ve been involved with community theatre my entire life, I am a dog lover and a volunteer at a local rescue. I love to sing and ride horses. I am a HUGE Disney fanatic and my favorite princess of all time is Rapunzel. I love ice cream, cupcakes and all things SWEET. I have 4 dogs including one service pup. OH, and i love anything that has glitter.