Weekly Update

My sedrate two weeks ago was extremely high so my doctors in Cinci had messaged me about starting Entyvio. They wanted me to get labwork to see where my labs were now. These labs came back completely normal. Told my doctors in Cinci about this and they were skeptical because there was no reason for it to randomly drop like that when all my other levels were extremely elevated. But I’ve been so busy this week trying to keep up with college and get projects done for the Amtgard I’m attending this weekend so little has gotten accomplished.

Monday I had college and found out I have a ten page paper in english for my final, had to finish my ten minute speech on Misogyny in the Media for Sociology. Tuesday went alright minus getting sick a couple times and managed to pop my shoulder out of place from laying on the floor. I did great on my speech though minus getting dizzy and it hurting to stand in place for 10 minutes.

Wednesday I finally finished the dress I was working on for this weekend.

It was my first attempt with applique and I was really happy with how it turned out.

My potassium was 3.1 and I’ve been able to tell by the fact when I stand up the room goes dark for a couple minutes and it feels like the air is taken from my lungs and my heart pounds out of my chest.

I had been hoping that with getting in 4 feedings a day that it would have improved the potassium levels but Hypokalemia: 1 Grace: 0

As always I try to push and ignore it because I want to accomplish so much and I do not want to let my health hold me back even though I should slow down.

But my own health was the least of my concerns this weekend as my friend Ari ended up back in the hospital with sepsis, a blood clot, and abscessed PICC line. We got to skype for a little bit tonight which was nice even though she was really out of it. She’s such a fighter and I love her. We both keep fighting no matter what happens because we have a mutual goal in mind: To meet each other.

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This weekend I leave for Maryland for an amtgard event. I’ve been mostly excited but a tad nervous with how my health has been but I got glucose tablets, icy hot, packed all my braces just in case, packed extra ostomy supplies, extra feeding tube supplies, I have my updated medical bracelet and ICE card. As well as I have my new cane now.

This time I’ve decided to stay in a hotel versus camping, just cause it’s not practical with all my medical stuff. But I am really excited because I’ve put a lot of work into projects and stuff for their Arts and Crafts tourney.

I will probably have tons of photos to show people when I get back. And lots of stories as well.

I just always get a bit nervous when I leave town without someone like my mom or grandma or dad with me incase something would happen. I know though that my Amtgard family would take great care of me, it’s just the fear of unknown. I’m sure it will go fine and I should probably just try to get some sleep before 7:00am comes around.

Next week will be focusing back on college and prepping for finals as well as getting more labs, and deciding whether or not to give Entyvio a go and whether or not I will be getting a PICC or a port for that since my veins are already very crappy when it comes to getting IVs started so I would hate to be a pin cushion for every infusion date.

I am also extremely looking forward to seeing my therapist again next week since I have been working on the breathing exercise she showed me and it actually helped calm me down before giving my big speech in class, plus it is just nice to have someone to talk to about everything and my random intrusive thoughts and silly fears that pop up out of no where and send me into random meltdowns. I really like her, she’s the first therapist I’ve had since I was 9 that I didn’t have a distaste for.

And I think that after the meltdowns I had at the last session she might finally have some insight as to what exactly happens during my freak outs and maybe can help me learn a way to diffuse them or at least find ways of keeping me safer while I have them since I have a bad habit of hurting myself when I self destruct.

I’ve been feeling rather indifferent this week, and I think it is because I have kept myself so busy I haven’t had time to think about my emotions at all. I feel bad because I’ve been slacking on keeping track of my emotions and trying to detect why I feel that way for therapy. I’ve been writing down my meltdowns though and what sends me into them though.

I’m hoping to avoid any meltdowns over the weekend, usually the people in Amtgard are very understanding and often can tell when I start to get overwhelmed and can back off, in comparison to some people and family in my life who have no idea and think I’m just agitated or “blah” and so they keep pushing and pushing until I finally break. Hopefully in time I will find a way to open up to them more and talk about all that, but that’s for therapy another day.

In the mean time I want to wish everyone a happy weekend and hope things are going well for anyone who is reading this. Your support and messages always brighten my day so I wanna thank the people who go out of their way daily to message me and tell me how much my blog means to them and so forth. I had someone message me this week telling me that I helped them cope with their new illness and that they were so grateful that they found me because they were really in a dark place and so it is the little messages like that, that remind me why I continue to write, why I keep it realistic and don’t sugar coat things.

So thank you to each and every one of you for your support.

 

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