Buckle Up, Friends! It Is An Insane Ride, Where We Choose To Find Sparks Of Joy

I'm working on better thumbnails, thank you for your grace. Vlog From March 9th. What happened to my PET Scan? Y'all, it cost nothing to be compassionate!!! A little compassion goes a long ways. I have another update video that I will either post Monday or sometime next week with the rest of the Pet Scan details.
I should have noted there are several illnesses where liver enzymes go up. I was just making the point here that it is rare and misunderstood in the hospital.
Sharing my go around with anxiety about my infusion with feeling so sick. Dehydration. Kindeys and liver are mad. Talking about possibilities with the Pet scan.
Once I am able to get a little more editing done, hopefully we can close this gap of when things were recorded and real life timing, but I think you guys see why it is taking me a while to get things done.
Welcome to Chronically Hopeful, it is an honor to have you with us sweet friend. I am just a twenty something year old girl learning to thrive despite being medically complex with more rare diseases than normal ones.
I am extremely passionate about educating others, letting them know they aren’t alone, and providing support. I like to try to do a couple videos a month with a more focused topic.
I would LOVE to connect with you. Check out my social media!
Instagram: / chronicallyhopeful14
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Other Videos To Check Out!:

[@adamguymon7096]

I'm sorry that happened? I'm surprised that the Pharmacy didn't pick that one up? The fact that the nurse would right out laugh at you really shows her character? I hope that you do better and you are positive so that doctor who said that you need to be positive needs to be in your shoes and needs to stop being ablest to you and realize that your disabilities are part of your life and this doctor needs to try to help you in the way you need it?

[@chronicallyhopeful5407]

I'll respond later today.

[@chronicallyhopeful5407]

First, I am so sorry it took so long to respond. I had a troll. Anyways. ME TOO! Which tells me a lot. They have been spoken too by another physician regarding the matter one who cared. You know, I am learning a ton recently. I will be doing a mental health video that you inspired so thank you. I will be explaining why I have worded things in certain ways. I didn't realize I was using toxic positivity on myself and making excuses for others. There of course are reasons it happened. Take comfort in this at least for now. I am no longer with pretty much any physician mentioned in any of these videos. I have a new team. As we know the ablest mindset is over powering in the world, too many have it is what I mean. So many do not want to acknowledge disability in the way it best benefits us. So many choose to pretend we are fine because it makes them comfortable and that is not okay. It is draining to have to fight non stop for the bare minimum with care. How are YOU doing??? I hope you have an amazing and restful weekend. That you can do something you enjoy.

[@yogabirds]

OMG!!! I’m sooo sorry you are having to deal with all this BS! You need to be more positive... 😡 😡 😡 There is a well known parenting technique with love and logic training is to delay consequences to make the child worry quite a bit about what exactly is going to happen. You say to the child “ I don’t know what we are going to do about this, but don’t worry we’ll deal with it later!’ In my opinion telling a patient or family member with a very high chance of having cancer, especially with your family history,they need to be more positive is extremely inappropriate! All that does is belittle a very valid concern and elicits an increase in anxiety and anger! The last thing any patient wants to do in your position is piss the medical staff off, but I do think, if you feel safe at some point, you need to let the doctor know how statement like this make patients and their family members feel. All that doctor should have said is “Look, I know how scary and frustrating it is to not have the answers to these questions, but we are doing all we can to get those answers as soon as we can.” I’m no longer able to absorb meds given orally as the layers of mast cells in my gi tract are too thick for anything yo get through, but when I could I felt pain in my liver area area and labs would show an increase in liver enzymes after just one dose of medications my body couldn’t tolerate. I believe Cheyanne is the same way. Knowing that isn’t really going to help you medically, but you know your body better than anyone else and you are not alone or imagining drug sensitivity when that happens. I’m sending hugs, healing thoughts, and prayers your way! Hang in there and remember you are loved and cared about very much!

[@chronicallyhopeful5407]

Thank you for watching, for your comment, and support. They mean so much to me!! YES! Oh my. I legit at this point feel I could write a book, The Dumb Things People or Professionals have said. Although, someone would likely force it into the fiction section, because so much that has unfolded is unbelievable. YES!! Thank you! Your comment is legit making my day so much better thank you with all my heart. I had my first troll on here and felt so discouraged and you reminded me why I do this thank you. Of course, I understand the mind set body connection. However, with that being said, I understand from in depth study of Psychology ignoring negative emotions is unhealthy for us. I feel everyone can feel however they need to with any health situation. It is a lot to take in. I don't feel anyone on the outside should get angry or upset if someone has "negative" emotions. It is normal to grieve! Yes! So many times, recently, we have left appointments confused, frustrated, angry, and more anxiety. A lot of legit concerns have been belittled so much recently it has taken a toll on my mental health. But they DO NOT have power over me. I am going to use the hurt to learn how to better care for myself mentally and heal mentally. When time, I will be sharing about the mental impact because it has come to my attention recently, a lot of people have been spoken to this way by medical professionals. I was under the impression it was just me due to where I live, my age, and being rare. Actually, I attempted to address it with the doctor, but the doctor took the fifth and was like no comment. It was the shock of my life. I loved my PCP and trusted her more than I could say, only to find out she didn't have my best interest. I will note I have some new doctors and I am in the process of reconstructing my team, which of course takes a bit of time but we are getting there. Honestly, some of the videos that will go up will shock you. I cannot believe so much of it. It feels like a terrible nightmare at times. The hospital was brought out. After. Man. I don't know what happened. I know some is politics other than that all I can say is the way "professional" speak to "customers" (that's what they call a patient now) is disrespectful and nasty. Yes, beautiful example of what to say! That is a perfect answer that makes you feel safe and reassured.

[@chronicallyhopeful5407]

I didn't want what I typed to disappear so this will be in two comments. I am so deeply sorry to hear that that happened to you! It is such a frustrating thing to not absorb things and at times scary. Are you able to safely get and absorb what your body needs? YES! People will tell me, my text book says elevated enzymes isn't painful. Well, that's lovely dear, I am here to tell you in my body it hurts. We know our bodies best! I wouldn't be surprised if Cheyenne is that way too. Aw, she is just the sweetest!!! I love her so much. Daily, I am thankful for her and her channel. Thank you so very much from the bottom of my heart. How are you doing today? I hope you have a fabulous, destressing, fun weekend. I hope you can do something that makes your heart happy.