It’s Been a Busy Week

Kingdom Quals, Cosplay, Doctors Appointments, Therapy and more. It’s been a busy week!

The week started off with Kingdom of Crystal Groves Quals. I entered 3 food entries, a painting, and 2 jewelry pieces. Needless to say, some could have been better but you live and you learn and you get better and the judges were amazing and really kind with their advice and tips so I know what I can work on to improve in the future to be a better crafter and baker. Not to mention we had travelers from all over our kingdom to come and visit us. I got to see some good friends and meet new people.

I pushed myself a bit harder than I should’ve for being a week without real nutrition and low potassium. I started getting chest pain while I was taking photos and was approached by a few friends to tell me to sit down or go home and get help, and of course I know they do it out of love and worry. So I completely understand. I think it stems from my desire to please people and make others happy. And of course here lately with things getting -to put it flatly- worse, I have been feeling very depressed over missing amtgard and not feeling like I am doing enough. But after talking to both my primary doctor and therapist, I realize they are right and I need to take it easy until I get my health better under control.

Monday was an easy day, no classes this week for spring break, no doctors appointment, nothing. So I spent the entire day catching up on school work and downloading photos to share to the kingdom page. And I got my Jean Grey costume in the mail which really brightened my day. I recently decided I wanted to start cosplaying at comic cons either locally or within the area or even travel with some friends.

For those who don’t know me, I have been obsessed with X-Men and Jean Grey for a very long time. When I was little I would pretend my Barbies were X-Men, in the 5th grade to cope with getting sick I began to spend the majority of my time as Jean Grey, it made me feel strong and invincible. And I suppose since things have gotten bad again I have sort’ve reverted to the only somewhat decent coping mechanism I know. Regardless, it made me super happy to get to feel that sort of inner power again.

Tuesday, had my appointment with my primary doctor (Dr. Hopkins). The nurse remembered me immediately and started asking how I had been feeling since getting out of the hospital and I explained that nothing had improved and my chest pain was a problem. I weighed 82lbs and my heart rate was 140 resting. She commented that I was extremely tachycardic and needed to try to get more fluids as well as saying she was checking my potassium to see if that could also play a factor as well as the malnutrition.

We talked more and she asked how things went at Cinci in regards to talking to my doctor about EDS. I said he agreed that it does sound like it and is going to find a geneticist there who is familiar with it and go from there but he was more concerned with my other problems right now. Which brought us to the NJ tube. Which luckily they were able to find a radiologist locally who is going to replace my NJ tube for me. With that I was sent to get lab work and then went to find an easter dress with my mom and sister.

Today I went to therapy, which was really great. She was proud of me for achieving some of the goals I had set for myself and for reaching new milestones and handling them well. She gave me some new goals for our next meeting and we are going to work on social cues and such so that I can better understand and communicate more effectively and not have such a hard time talking to people and socializing. Then went out to visit with family for my cousin’s birthday.

I’ve been working on school work to catch up, scheduling appointments and such as well as learning to sign 7 Years by Lukas Graham in sign language for fun. Despite my health being fickle to say the least, I have been trying to keep a sunny disposition and stay positive which therapy has helped a lot with, so hopefully we will achieve more in regards to that.

Tomorrow I have a dentist appointment, just a cleaning though so not too bad. Then I am going out to dinner with my grandparents on my dad’s side because I missed my grandmother’s birthday while I was in the hospital and felt guilty so I wanted to make it up to her.

It has been an exhausting week and hopefully things will start to greatly improve once I can get my nutrition levels up, and hopefully I can continue to set and achieve small goals emotionally and socially. This is my life and I have accepted that. Just gotta work around it!

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