I recently read another blog site where someone talked about their journey with Primary Sclerosing Cholangitis or PSC. It inspired me to begin sharing my own story. This blog is for those with PSC who want to feel that they are not alone in this, and for friends and family of those with PSC who want an inside look at how it is for others or want to know how they can be supportive. I wanted to begin this blog early to show what it is like from the very beginning. And if I am being honest with myself, I think this is good for me. Sharing the struggles with others that want to feel that they are not alone or learn how to support others feels good. It also gives me a place to talk about it.
This is also for those that want to see if others have found a way to put PSC in remission and what that journey is like from the beginning. My PSC is in the early stages and may not be as bad as others. Because PSC is a progressive disease, it may be very difficult to put it into remission. I have read stories of it. I will be taking a plant based diet approach with no processed foods, exercise, and we will see what else along the way. It is normally treated with the opposite type of diet and medications. I say “treat”, but it really is more for symptom management. Some doctors have said that diet is not related to PSC, so I am going against some advice on this one. I know that. There have been success stories with a plant based diet and I am going to give it a shot.
A little about me:
I have just been diagnosed this week with PSC, but have been having some symptoms for awhile. I am currently a 29 year old female who has decided to focus on my career first and then on creating a family. This means that I do not currently have children, but want them in the future. I have a doctoral program that begins in August this year and lasts for three years.
I am a yogi at heart. Meditation, mindfulness, non-judgement, and compassion are important to me. I may not be very great at them yet, but they matter and I work towards them everyday. I often find myself lost in a good book. I enjoy creating…. anything really. I love the outdoors and physical activity. Long walks on the beach etc. ^_-. I am sure that you will get to know me better as the posts continue.
Now, I know that this is a very serious, life threatening condition. I do take it very seriously and have spent a lot of time crying about it already and asking myself a lot of existential and life questions. That being said, I am a gamer and geek. In order to make this more enjoyable to write and possibly to read, I am going to think of this as a boss fight and I the main character in this story. This allows me to externalize the “problem”, work towards helping myself, not feel like I am broken, and help it to feel more manageable. I am a counselor by trade and will use techniques like this throughout the blog on myself.
Let’s take a look at the characters in this story
Main character: Kachu, 29 yr female, human (although I would prefer to be an elf),
Vegan Diet low in unhealthy fats (? Health, +5 hope)
Supportive, caring partner we will call Birdy (+5 Strength)
Amazing Gastroenterologist (+3 Dexterity)
Great Health Insurance (+3 Dexterity)
Book Devouring (+2 Intelligence)
Determination (+3 Willpower)
Journal (+ 2 Perception, + 2 Willpower)
Meditation (+3 Wisdom)
Thyroid autoimmune disease (-5 health, -3 stamina)
Early stages of PSC (+3 dexterity)
IBD (-5 strength, -3 stamina)
Boss: PSC. Check out the link below for the basics from the Liver Foundation.
For more on IBD visit: http://www.crohnscolitisfoundation.org/what-are-crohns-and-colitis/what-is-crohns-disease/
No cure (-10 health, -4 hope)
Must have a transplant once it gets bad enough regardless of what Kachu does (-10 health)
Medications to treat the symptoms (-2 hope, -2 health)
Bonuses for PSC:
Often brings allies like Crohn’s , Ulcerative Colitis, or cancer (-10 health)
Lives inside the Character is attacks (Autoimmune) (-5 health)
Doctors that tell the character diet doesn’t make a difference (-3 hope)
What taking blows from PSC w/IBD’s is like:
Fever and chills
Pruritus, or itching of the skin
Jaundice, a yellowing of the skin and eyes
Urgency going to the restroom
Sharp pains when needing to go to the restroom
Now that we have taken a look at the two main characters, Kachu and PSC…
Hopefully that gives a look into what we will be working to battle. Sometimes battling isn’t always about fighting, but more about learning how to work with the boss or out smart it. In this case, the boss might just be a monster that has developed because the body needed something it wasn’t getting or got something it didn’t need. It is the body’s way of telling us something is wrong. With autoimmune diseases, the body is trying to protect its self. It just don’t know how to do that properly. Thank you body for trying to protect me… also, maybe we need to try rewiring you. Oh rewiring you may not work huh? Okay, let’s replace a part or two.
To geek it up for a minute, it makes me think of Princess Mononoke. There are beautiful, kind Forest Spirits. When the spirits are shot by humans, they turn into monsters because they are injured. I think of it kinda like that.
So, while I will refer to it as a boss battle, I think it is important to understand why the body is doing what it is doing and find compassion for yourself and your body. It is easy to want to reject the body that feels like it is rejecting you. This is easier said than done and I journal to help myself with this.
Thank you for joining the battle and being on the team of all of those with PSC by learning more about it and sharing in my story. There is more to come soon.